Routledge Handbook of Disability Studies; Second Edition

ROUTLEDGE HANDBOOK OFDISABILITY STUDIES

This fully revised and expanded second edition of the Routledge Handbook of Disability Studies

takes a multidisciplinary approach to disability and provides an authoritative and up-to-dateoverview of the main issues in the field around the world today. Adopting an internationalperspective and arranged thematically, it surveys the state of the discipline, examiningemerging and cutting-edge areas as well as core areas of contention.

Divided into five parts, this comprehensive handbook covers:

� Different models and approaches to disability.� How key impairment groups have engaged with disability studies and the writings

within the discipline.� Policy and legislation responses to disability studies and to disability activism.� Disability studies and its interaction with other disciplines, such as history, philosophy,

sport, and science and technology studies.� Disability studies and different life experiences, examining how disability and disability

studies intersect with ethnicity, sexuality, gender, childhood, and ageing.

Containing 15 revised chapters and 12 new chapters from an international selection ofleading scholars, this authoritative handbook is an invaluable reference for all academics,researchers, and more advanced students in disability studies and associated disciplines such associology, health studies and social work.

Nick Watson is Professor of Disability Research and Director of the Centre for DisabilityResearch at the University of Glasgow, UK. He has written on a range of disability issuesincluding disability and technology, disability and identity, and disability theory. He serves onthe executive editorial board of Disability & Society and is Director of What Works Scotland.

Simo Vehmas is Professor of Special Education at Stockholm University, Sweden. He haswritten on various theoretical and ethical issues such as the ontological formation of disabilityand the moral significance of intellectual disability regarding moral status and sexuality.

ROUTLEDGE HANDBOOK OF

DISABILITY STUDIES

Second edition

Edited by Nick Watson and Simo Vehmas

Second edition published 2020by Routledge2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN

and by Routledge52 Vanderbilt Avenue, New York, NY 10017

Routledge is an imprint of the Taylor & Francis Group, an informa business

© 2020 selection and editorial matter, Nick Watson and Simo Vehmas; individual chapters,the contributors.

The right of Nick Watson and Simo Vehmas to be identified as the authors of the editorialmaterial, and of the authors for their individual chapters, has been asserted in accordance withsections 77 and 78 of the Copyright, Designs and Patents Act 1988.

With the exception of Chapter 6, no part of this book may be reprinted or reproduced orutilised in any form or by any electronic, mechanical, or other means, now known orhereafter invented, including photocopying and recording, or in any information storage orretrieval system, without permission in writing from the publishers.

Chapter 6 of this book is available for free in PDF format as Open Access from the individualproduct page at www.routledge.com. It has been made available under a Creative CommonsAttribution-Non Commercial-No Derivatives 4.0 license.

Trademark notice: Product or corporate names may be trademarks or registered trademarks,and are used only for identification and explanation without intent to infringe.

British Library Cataloguing-in-Publication DataA catalogue record for this book is available from the British Library

Library of Congress Cataloging-in-Publication DataNames: Watson, Nick, 1960- editor. | Vehmas, Simo.Title: Routledge handbook of disability studies / edited by Nick Watson and Simo Vehmas.Other titles: Handbook of disability studiesDescription: Second Edition. | New York : Routledge, 2020. |Series: Routledge international handbooks | Revised edition of Routledge handbook of

disability studies, 2012. | Includes bibliographical references and index.Identifiers: LCCN 2019015152| ISBN 9781138365308 (hardback) |

ISBN 9780429430817 (ebook)Subjects: LCSH: Disability studies. | People with disabilities.Classification: LCC HV1568.2 .R68 2020 | DDC 362.4–dc23LC record available at https://lccn.loc.gov/2019015152

ISBN: 978-1-138-36530-8 (hbk)ISBN: 978-0-429-43081-7 (ebk)

Typeset in Bemboby Taylor & Francis Books

https://lccn.loc.gov/

For Eleanor and Ruut

CONTENTS

List of illustrations xi

List of contributors xii

PART I

Theorising disability 1

1 Disability studies: Into the multidisciplinary future 3Nick Watson and Simo Vehmas

2 Understanding the social model of disability: Past, present and future 14Colin Barnes

3 Critical disability studies: Rethinking the conventions for the ageof postmodernity 32Margrit Shildrick

4 Minority model: From liberal to neoliberal futures of disability 45David T. Mitchell and Sharon L. Snyder

5 The ICF and its relationship to disability studies 55Jerome E. Bickenbach

6 Disability and human rights 72Lucy Series

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7 Invalidating emotions in the non-disabled imaginary: Fear, pityand disgust 89Bill Hughes

8 Psycho-emotional disablism: The missing link? 102Donna Reeve

9 The biopolitics of disability and animality in Harriet McBryde Johnson 117Jan Grue and Michael Lundblad

10 Agency, structure and emancipatory research: Researching disablementand impairment 127Nick Watson

PART II

Disablement, disablism and impairment effects 143

11 Deaf identities in disability studies 145Jackie Leach Scully

12 Theorising the position of people with learning difficulties withindisability studies: Progress and pitfalls 158Kirsten Stalker

13 Long-term disabling conditions and disability theory 172Sasha Scambler

14 Critical realism as the fourth ‘wave’: Deepening and broadening socialperspectives on mental distress 189Richard Brunner

15 It’s about time!: Understanding the experience of speech impairment 206Kevin Paterson

16 Blindness/sightedness: Disability studies and the defiance of di-vision 219Ben Whitburn and Rod Michalko

PART III

Social policy and disability: Health, personal assistance, employment

and education 235

17 Social suffering in the neoliberal age: Surplusisty and the partiallydisabled subject 237Karen Soldatic

Contents

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18 Disabled people and employment: A UK perspective 250Rosa Morris

19 Disability studies, inclusive education and exclusion 265Michele Moore and Roger Slee

20 Independent living and the failure of governments 281Charlotte Pearson

21 Diagnosis as social practice and the possibility of interruption 295Scot Danforth

22 Boundary maintenance: Exploring the intersections of disabilityand migration 305Nicola Burns

23 Disability in developing countries 321Tom Shakespeare

PART IV

Disability studies and interdisciplinarity 335

24 The metanarrative of disability: Social encounters, cultural representationand critical avoidance 337David Bolt

25 What can philosophy tell us about disability? 348Simo Vehmas and Christopher A. Riddle

26 The psychology of disability 362Dan Goodley

27 Challenging the impairment/disability divide: Disability history and thesocial model of disability 377Michael Rembis

28 Disability, sport and physical activity 391Brett Smith and Andrew C. Sparkes

29 We have never been able-bodied: Thoughts on dis/ability andsubjectivity from science and technology studies 404Vasilis Galis

Contents

ix

PART V

Contextualising the disability experience 419

30 Feminism and disability: A cartography of multiplicity 421Ana Bê

31 Disability and sexuality 436Xanthe Hunt

32 Race/ethnicity and disability studies: Towards an explicitlyintersectional approach 453Deborah Stienstra

33 Mothering and disability: From eugenics to newgenics 467Claudia Malacrida

34 Understanding disabled families: Replacing tales of burden and resiliencewith ties of interdependency 479Janice McLaughlin

35 ‘I hope he dies before me’: Unravelling the debates about ageing andpeople with intellectual disability 492Christine Bigby

Index 507

Contents

x

ILLUSTRATIONS

Figures

5.1 The ICF model 6114.1 The ingredients for a thriving life that a person values and would choose 19814.2 Study of mental distress using the Capabilities Approach 19914.3 Compatibility of Capabilities Approach and critical realism 200

Tables

5.1 Models, components and conceptual meanings of ‘disability’ 585.2 Chapter headings of ICF Activities and Participation classification 6319.1 Summation of disability discourses 26822.1 Key migration terms 30726.1 Professionals allied to professionals – or – to the community 373

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CONTRIBUTORS

Colin Barnes is Emeritus Professor of Disability Studies at the Centre for Disability Studies,University of Leeds, UK.

Ana Bê is a lecturer in Education and Disability Studies at Liverpool Hope University, UK,and a core member of the Centre for Culture and Disability Studies. Her work investigatesissues of social justice and social change, with a particular focus on disabled people.

Jerome E. Bickenbach is Professor Emeritus at Queen’s University, Canada, and VisitingProfessor at the University of Lucerne, Switzerland. He is the author of Physical Disability

and Social Policy (1993) and updated this material in Ethics, Law and Policy for the SAGEDisability Resource Library (2016). From Disability to Practice (2018) is a collection of essayson his work. Since 1995 he has been a consultant for the World Health Organization(WHO) working on drafting, testing, and implementation of the ICF, and continues toconsult with WHO on international disability social policy. His research is in disabilitystudies, using qualitative and quantitative research techniques within the paradigm of par-ticipatory action research. Since 2007 he has headed up the Disability Policy Unit at SwissParaplegic Research in Nottwil, Switzerland, and is Professor at the Faculty of Humanitiesand Social Science at the University of Lucerne and at the Centre for Rehabilitation inGlobal Health Systems.

Christine Bigby is Professor of Social Work and Social Policy and Director, Post-graduate Programs, and leads a Disability Research Group at the School of Social Workand Social Policy at Latrobe University, Melbourne, Australia. She has a long history ofresearching policy, programme, and practice issues about adults with intellectual dis-abilities. She has led research about ageing with an intellectual disability in Australia andis Chair of the IASSID Special Interest Group on Ageing and Intellectual Disability.Bigby is the editor of Australian Social Work, and she has published widely in the peer-reviewed academic literature.

David Bolt is Professor of Disability Studies at Liverpool Hope University, UK, wherehe is Director of the Centre for Culture and Disability Studies and the disability studies

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MA programme. He has five books to his name and his work has been translated intoDutch, Spanish, and Korean. He is the editor-in-chief of the Journal of Literary and Cul-

tural Disability Studies (Liverpool University Press); a series editor of Literary DisabilityStudies (Palgrave Macmillan/Springer); and a general editor of A Cultural History ofDisability (Bloomsbury).

Richard Brunner is Research Associate at the School of Social and Political Sciences at theUniversity of Glasgow, UK. Since 2008 his career has encompassed a wide range of qualitativesocial research using a variety of methods and theoretical frameworks. Studies have involvedpeople with mental distress, disabled parents, public services, education, domestic abuseprevention and human rights. Brunner began his career in London as a frontline worker,including supporting homeless people and mental health advocacy, before going on toconduct social policy analysis in the third and statutory sectors in Scotland.

Nicola Burns is a lecturer in Disability Studies at the University of Glasgow, UK. She hasresearched and written on a range of disability issues including mental distress, housing, andaccess to leisure and the outdoors for disabled people. Her recent research interests includehealth care access for migrants, and disability and migration.

Scot Danforth is Professor of Disability Studies and Inclusive Education at ChapmanUniversity, California, USA. His recent scholarship focuses on the roots of the Americandisability rights movement amid the political fervour of late 1960s Berkeley, California, andthe development of the Rolling Quads, an activist group led by Ed Roberts. His booksinclude Becoming a Great Inclusive Educator (2nd edition, 2017), Foundations of Inclusive Edu-cation Research (co-edited with Phyllis Jones, 2015), and The Incomplete Child: An Intellectual

History of Learning Disabilities (2009).

Vasilis Galis is Associate Professor in the Technologies in Practice group at the IT University ofCopenhagen, Denmark. His research focuses on policy, scientific and technological knowledge anddisability and he works closely with the organisation of disabled people in both Greece and Sweden.His current research is examining how social groups produce lay knowledge for improving thequality of disabled persons’ lives and how they intervene in sociotechnical controversies.

Dan Goodley is Professor of Disability Studies and Education at the University of Sheffield,UK, and co-director of the interdisciplinary research institute iHuman. He has written anumber of disability studies-related publications including Disability Studies (2016, SAGE, 2ndedition), and Dis/ability Studies (Routledge, 2014).

Jan Grue is Professor of Qualitative Methods at the Department of Special Needs Education,University of Oslo, Norway. His research interests include disability, discourse analysis, rhetoric,embodiment and normality. He is the author, most recently, of Disability and Discourse Analysis

(Routledge, 2015), and Det var en gang et menneske, a Norwegian-language book onposthumanism (Universitetsforlaget, 2019).

Bill Hughes is Professor of Sociology in the Department of Social Sciences at GlasgowCaledonian University, UK. He was co-editor (with Dan Goodley and Lennard Davis) ofDisability and Social Theory (2012). He is a regular contributor too and a member of the edi-torial board of Disability & Society and was editor of the Scandinavian Journal of Disability

List of contributors

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Research from 2012–2015. Bill is currently working on a book entitled A Historical Sociology of

Disability: Human Validity and Invalidity from Antiquity to Early Modernity (forthcoming).

Xanthe Hunt is a researcher at the Institute for Life Course Health research at the Faculty ofHealth Science at Stellenbosch University in South Africa. She has a joint affiliateship at theUniversity of Los Angeles, California, USA, at the Phodiso Trauma Research Network.Xanthe holds a Bachelor’s degree in humanities, majoring in Psychology and English, withhonours in Journalism and Psychology and a PhD in Psychology. She is a public healthresearcher, both in her chosen fields of disability studies and child development, as well as inmaternal health and implementation science. Her research interests include sexual andreproductive health, women’s health, and the social determinants of health.

Jackie Leach Scully is Professor of Bioethics and Director of the Disability InnovationInstitute, University of New South Wales, Australia. Before engaging in bioethics she trainedas a molecular biologist, while her interest in disability is rooted in personal and familyexperience. After several years at the Unit for Bioethics, University of Basel, Switzerland,she moved to the Policy, Ethics and Life Sciences (PEALS) Research Centre, NewcastleUniversity, UK, eventually becoming Executive Director. She has written widely on severalareas of interest in bioethics, especially genomic and reproductive technologies and the ethicsof humanitarian aid, with a focus on the implications for disability. She is the author of Dis-

ability Bioethics: Moral Bodies, Moral Difference (2008), co-editor of Feminist Bioethics: At theCenter, On the Margins (2010), and is currently the editor-in-chief of the International Journal ofFeminist Approaches to Bioethics.

Michael Lundblad is Professor of English-Language Literature at the University of Oslo,Norway. He is the author of The Birth of a Jungle: Animality in Progressive-Era U.S. Literature

and Culture (Oxford University Press, 2013), the co-editor of Species Matters: Humane Advocacy

and Cultural Theory (Columbia University Press, 2012), and the editor of Animalities: Literaryand Cultural Studies Beyond the Human (Edinburgh University Press, 2017). He is currently thePrimary Investigator for a research project with Jan Grue, funded by the Research Council ofNorway, on ‘The Biopolitics of Disability, Illness, and Animality (BIODIAL)’.

Janice McLaughlin is Professor of Sociology at Newcastle University, UK. Her researchexplores childhood disability and the various social and medical worlds that disabled childrenmust navigate. Her research covers disability studies, childhood and youth studies, medicalsociology, sociology of family and social anthropology. Her most recent book (co-authoredwith Edmund Coleman-Fountain and Emma Clavering) is Disabled Childhoods: Monitoring

Differences and Emerging Identities for Routledge Advances in Disability Studies (2016).

Claudia Malacrida is Professor in Sociology at the University of Lethbridge, Canada. She isthe author of several books on disability, health and the body, including Mourning the Dreams:

Miscarriage, Stillbirth and Early Infant Death (Left Coast Press, 2016), Sociology of the Body: A

Reader (Oxford University Press, 2008), Cold Comfort: Mothers, Professionals and ADHD

(University of Toronto Press, 2003), and A Special Hell: Institutional Life in Alberta’s Eugenic

Years (University of Toronto Press, 2015).

Rod Michalko has recently retired from teaching disability studies at the University ofToronto, Canada. He is the author of numerous articles and several books, including The


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Difference that Disability Makes (2002), and The Two in One: Walking with Smokie, Walking with

Blindness (1999). Enjoying retirement tremendously, and recommending it, Rod continueshis exploration of blindness through fiction. Things Are Different Here published by InsomniacPress (2017) is his first collection of short stories. He is working on the final edits of his firstnovel, My Thick Persian Rug (forthcoming).

David T. Mitchell is a scholar, editor, history and film exhibition curator, and filmmaker inthe field of disability studies. His books include the monographs Narrative Prosthesis: Discourses

of Disability (2000), Cultural Locations of Disability (2005), The Biopolitics of Disability: Neoliber-

alism, Ablenationalism, and Peripheral Embodiment (2015), and the collections The Body and

Physical Difference: Discourses of Disability (1997), A History of Disability in Primary Sources, vol. 5of The Encyclopedia of Disability; The Matter of Disability (2019). He curated The Chicago Dis-

ability History Exhibit (Vietnam Veterans Memorial Museum, 2006) and assembled the pro-grammes for the Screening Disability Film Festival (Chicago, 2006) as well as the DisArtIndependent Film Festival (Grand Rapids, MI, 2015). His four award-winning films includeVital Signs: Crip Culture Talks Back (1995), A World without Bodies (2002), Self Preservation: TheArt of Riva Lehrer (1995), and Disability Takes on the Arts (1996). He is currently working on anew book and feature-length documentary film on disability and the Holocaust tentativelyentitled Disposable Humanity.

Michele Moore is Professor of Inclusive Education and holds an honorary position at theUniversity of Essex, UK. She is also the executive editor of Disability and Society. She haspublished widely on disability and inclusion in the classroom.

Rosa Morris completed her PhD, In/validating Disability: Changing Labour Markets and Out of

Work Disability Benefits, at the University of Leeds, UK. She is currently engaged in welfarerights work, helping disabled people to get the benefits to which they are entitled.

Kevin Paterson is a researcher based at the Centre for Disability Research, University ofGlasgow, UK. His research interests include the everyday reality of being disabled, com-munication exclusion, and ageing with a lifelong condition. He has worked on a numberof research projects and has written about a range of issues within the field of disabilitystudies.

Charlotte Pearson is a senior lecturer in Social and Public Policy at the School of Socialand Political Sciences at the University of Glasgow, UK. She has published and researchedextensively on personalisation and its impact on the lives of disabled people. More recentwork has examined the impact of austerity and new initiatives offering transition support fordisabled young adults in Scotland. She also teaches disability options at undergraduate andpostgraduate level.

Donna Reeve is a research officer within the civil service as well as an independent scholarin disability studies. She has written extensively on different aspects of psycho-emotionaldisablism and the complex interplay between disablism, impairment and identity. She iscurrently collaborating with people in the fields of counselling and clinical psychology tohelp to develop a therapeutic model for working with disabled clients.


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Michael Rembis is the Director of the Centre for Disability Studies and an Associate Pro-fessor in the Department of History at the University at Buffalo (SUNY, USA). He hasauthored or edited many books, articles, and book chapters, including The Oxford Handbook

of Disability History, which he co-edited with Catherine Kudlick and Kim Nielsen (OxfordUniversity Press, 2018). His research interests include the history of institutionalisation, madpeople’s history, and the history of eugenics. He is currently working on a book entitled ‘A

Secret Worth Knowing’: Living Mad Lives in the Shadow of the Asylum (forthcoming).

Christopher A. Riddle is Associate Professor and Chair of Philosophy at Utica College,New York, USA, where he is also Director of the Applied Ethics Institute. His work hasbeen published in journals such as the Journal of Social Philosophy, Bioethics, the American

Journal of Bioethics, the International Journal of Applied Philosophy, Essays in Philosophy,

Medicine, Healthcare, & Philosophy, Topoi, and Disability Studies Quarterly. He is also theauthor of Disability & Justice (Lexington Books, 2014), Human Rights, Disability, and

Capabilities (Palgrave Macmillan, 2016), and is the editor of From Disability Theory to Practice

(Lexington Books, 2018).

Sasha Scambler is Senior Lecturer in Sociology at King’s College London, UK. She has aspecial interest in health, focusing on long-term conditions, disability, inequality in all itsvarious forms and social theory. She is an editor of the journal Sociology of Health and Illness

and a contributing editor of the British Sociological Association (BSA) affiliated ‘cost ofliving blog’. She has just completed her term as co-convenor of the BSA Medical SociologyGroup.

Lucy Series is a Senior Research Fellow and Lecturer in Law at the School of Law andPolitics, Cardiff University. She holds a Wellcome Society and Ethics Research Fellowship,and is currently researching the history of the Mental Capacity Act 2005 and the emergenceof contested claims that mental capacity law empowers disabled people. She also researcheshuman rights, deprivation of liberty, legal capacity, and adult social care law.

Tom Shakespeare is Professor of Disability Research at the International Centre for Evi-dence in Disability, London School of Hygiene and Tropical Medicine, UK, and was for-merly at the World Health Organization where he co-edited the World Report on Disability

(2011). He is chair of Light for the World UK. His books include Disability Rights and Wrongs

(2014) and The Sexual Politics of Disability (1996).

Margrit Shildrick is Guest Professor in Gender and Knowledge Production at ERG, havingworked for several years at Tema Genus, the unit for Interdisciplinary Gender Studies atLinköping University. Her research covers postmodern feminist and cultural theory, bioethics,critical disability studies and body theory. She is the author of Dangerous Discourses of Dis-

ability, Subjectivity and Sexuality (2009 Palgrave Macmillan), Embodying the Monster (2002Sage), and Leaky Bodies and Boundaries (1997 Routledge), and joint editor of Ethics of the Body(MIT Press 2005) with Roxanne Mykitiuk; and Feminist Theory and the Body (1999 EdinburghUP) and Vital Signs (1998 Edinburgh UP) both with Janet Price.

Roger Slee is a professor at the School of Education, University of South Australia. He isfounding editor of the International Journal of Inclusive Education and has published widely overthe course of a long and distinguished career.


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Brett Smith is a professor of Disability and Physical Activity at Durham University, UK. Heworks closely with organisations such as Disability Rights UK to co-create research focusingon sport and exercise. He is the President of the International Society of QualitativeResearch in Sport and Exercise (twitter @QRSEsoc).

Sharon L. Snyder has worked as an author, artist, activist and filmmaker. Her booksinclude Narrative Prosthesis: Disability and the Dependencies of Discourse (2000), Cultural Loca-tions of Disability (2006), and The Biopolitics of Disability: Neoliberalism, Ablenationalism, and

Peripheral Embodiment (2015). She has also edited three collections, The Body and Physical

Difference: Discourses of Disability (1997), A History of Disability in Primary Sources, vol. 5 ofThe Encyclopedia of Disability; The Matter of Disability (2019), and has authored more than 35journal articles and chapters. She has curated a museum exhibition on disability history atthe National Vietnam Veterans Memorial Museum, curated disability film and arts pro-gramming for festivals and conferences, and created four award-winning documentaryfilms: Vital Signs: Crip Culture Talks Back (1995), A World without Bodies (2002), Self

Preservation: The Art of Riva Lehrer (2005), and Disability Takes on the Arts (2006).

Karen Soldatic is an associate professor at the School of Social Sciences and Psychology,Western Sydney University, Australia. She was awarded a Fogarty Foundation Excellence inEducation Fellowship for 2006–2009, a British Academy International Fellowship in 2012, afellowship at the Centre for Human Rights Education at Curtin University (2011–2012),where she remains an Adjunct Fellow, and an Australian Research Council DECRA Fellow-ship (2016–2019). Her research on global welfare regimes builds on 20 years of experience asan international, national, and state-based senior policy analyst, researcher and practitioner. Sheobtained her PhD (distinction) in 2010 from the University of Western Australia.

Andrew C. Sparkes works at the Carnegie School of Sport at Leeds Beckett University,UK. His research interests revolve around the ways in which people experience differentforms of embodiment over time in a variety of contexts – often not of their own making.Recent work has focused on interrupted body projects and the narrative reconstruction ofself; ageing bodies in sport and physical activity; sporting auto/biographies as analytical andpedagogical resources; and sensuous ways of knowing and being in physical cultures.

Kirsten Stalker was Professor of Disability Studies at the School of Applied Social Sciencewithin the University of Strathclyde. From 1991–2006 she worked at the Social WorkResearch Centre, University of Stirling, and prior to that at the Norah Fry Research Centreat Bristol University. Much of Stalker’s research has focused on disabled children and peoplewith learning disabilities. She is a member of the editorial boards of Disability & Society andthe British Journal of Learning Disabilities. She is now retired.

Deborah Stienstra holds the Jarislowsky Chair in Families and Work, is a professor ofPolitical Science, and the Director of the Centre for Families, Work and Wellbeing at theUniversity of Guelph, Canada. She is the author of About Canada: Disability Rights (Fern-wood, 2012). Her research and publications explore the intersections of disabilities, gender,childhood, and Indigenousness, identifying barriers to, as well as possibilities for, engagementand transformative change. Her work also contributes to comparative and trans/internationalresearch and theory related to intersectional disability rights.


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Simo Vehmas is Professor of Special Education at Stockholm University, Sweden. He haswritten on various theoretical and ethical issues such as the ontological formation of disabilityand the moral significance of intellectual disability regarding moral status and sexuality.

Nick Watson is Professor of Disability Research and Director of the Centre for DisabilityResearch at the University of Glasgow, UK. He has written on a range of disability issuesincluding disability and technology, disability and identity, and disability theory.

Ben Whitburn is Senior Lecturer of Inclusive Education at Deakin University, Australia. Hisprofessional background is in teaching secondary and higher education students with andwithout disabilities for more than 15 years. Whitburn’s research is positioned on disabilitystudies in education, inclusive education policy and practice, built and online accessibility,insider perspectives, and educational policy. Whitburn is an eager traveller, live music listener,and craft beer enthusiast.


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PART I

Theorising disability

1

DISABILITY STUDIES

Into the multidisciplinary future

Nick Watson and Simo Vehmas

In 2012, when the first edition of this Handbook was published, disability studies was well onthe way to becoming an established and recognised field of research and a discipline in itsown right. It had its own agenda, its own approach to research, a large and successful rangeof academic national and international organisations had emerged, all of which ran their ownconferences and, had established a series of highly successful and influential academic journals.It was also starting to change the way disability was theorised outside disability studies,influencing writing across the social sciences and beyond. Perhaps most importantly, theideas generated within disability studies were able to evidence significant impact beyond theacademy. The relatively simple dualism of the social model, with its distinction betweenimpairment and disablement, that Hasler termed ‘our one big idea’ (1993), had become, inpolicy terms, the most dominant model of disability. The repositioning of disability as a pro-blem of social justice formed the basis of definitions of disability across a range of differentsettings, from the local right up to the national and the transnational. The social modelinformed policy development in the European Union, the United Nations (UN), the WorldHealth Organization (WHO), the World Trade Organization, and the World Bank. While itmight not have completely changed the practice, the social model had significantly alteredthe discourse that surrounds disability, nationally, internationally and multinationally, at thehighest level. Policies and practices developed by the disabled people’s movement anddisability studies had started to influence mainstream policy development. Co-production,personalisation and personal budges and assets-based approaches, once so radical and part ofthe disabled people’s movement’s demand for inclusion, had become well-established policyresponses across a range of settings and were part of the public service reform agenda, althoughtheir origin and the debt owed to the disabled people’s movement is rarely discussed oracknowledged. The last seven years have seen the reach and impact of disability studiesgrow even further.

The field has continued to maintain its close ties with the disabled people’s movement thatwas so crucial to its early development. This link has been a central part of its success, as it hassought to unpack and explore the lives of disabled people. Perhaps one of the biggest changesto have occurred during this period has been the development of new links with other dis-ciplines, as disability studies has firmly established itself across the academy. It has movedbeyond sociology and social policy, arguably the two most important disciplines in its early

3

development, and has become fully interdisciplinary. Disability studies is now found acrossthe curriculum, in the arts, humanities (Hadley and McDonald 2018) and even in the med-ical sciences. Disability studies is now routinely taught as part of undergraduate medicaldegrees in the United Kingdom and elsewhere (Shakespeare et al. 2009).

When the social model was first formulated by Mike Oliver (1983, 1990), building on thework of the Union of the Physically Impaired Against Segregation (1976), there was a realsense of optimism, a fact that is often overlooked. Vic Finkelstein created an utopia in anarticle called ‘The Village’ where everything was accessible, and disability disappeared. Itmarked a sea change in the way disability was represented. Rather than focus on how awfullife is for disabled people we should look instead at how things can be changed and how lifecan be improved. There have been many dramatic improvements for disabled people in boththe global south and north. The UN Convention on the Rights of People with Disabilitieshas been signed by 162 countries, 92 of whom have signed the Optional Protocol. Reflectingback on the social model 30 years on, Oliver argues that:

Armed with the idea that we needed to identify and eradicate the disabling barrierswe had in common, the disabled people’s movement forced the media to changetheir images of us, transport providers to open up many of their services to us,public buildings to become much more accessible and the legal system changed tomake it illegal to discriminate against us.

(2013: 1024–1025)

There is no doubt that there are a large number of people whose lives have been turnedaround by the social model. They are no longer the problem – it is society that is at fault. Itis a really powerful and life-affirming model.

However, disability remains an enigma. Debates around definitions of disability, the role ofimpairment, and how best to theorise disability abound (Shakespeare 2013). It is also true thatthere is a great deal of concern that the original radical element of the social model and itsimplications have become diluted (Oliver 2013). As disability studies has grown, its centralideas and concepts have increasingly attracted critical academic scrutiny, and with this hascome increasing demands for academic validity (Shakespeare 2013).

The social model is an example of what Katherine Smith calls a ‘charismatic idea’ (2013).It has a very well-developed and evidenced critique but it is not always able to provide analternative arrangement, or solution, to the problems that it identifies. For example, inScotland, we know that only 7 per cent of adults with a learning disability are in work(McTier et al. 2016). Of course, a significant number of those not in work have been dis-criminated against, face barriers, and have been denied the opportunity to work, many aresimply not able to work (Abberley 1998). It is also true that success in transforming the waythat policy portrays the problem of disability has not resulted in institutional change. Despiteover 20 years of anti-discrimination legislation, disabled people are still far more likely thantheir non-disabled peers to be living in poverty. In the UK, for example, 28 per cent ofpeople who live in poverty are themselves disabled, and a further 20 per cent of people inpoverty live in a household with a disabled person. In other words, almost half of those livingin poverty in the UK are in a household with a disabled person or are disabled themselves(Tinson et al. 2016). Abuse of disabled people in care homes (take, for example, the case ofConnor Sparrowhawk and other similar outrages) occurs far too often (Ryan 2017). Fraserargues that while feminism has brought about a cultural revolution, it has not yet beentranslated into institutional change. The same applies to disability and disability studies. There

Introduction to disability studies

4

are many unresolved problems with a barriers approach (Shakespeare 2013; Watson 2012).While certain discriminatory practices can be removed or blocked, it is sometimes difficult tothink of or find less discriminatory or oppressive factors with which to replace them.

The Introduction to the first edition of this book argued that disability studies was at acrossroads (Watson et al. 2013). Disability studies faced new ideas and concepts that sought tochallenge its predominantly materialist approach. The Introduction pointed to internal cri-tiques from within the discipline, particularly from disabled feminists such as Morris (1991),Crow (1996) and Thomas (1999), who made the case for an account that included gender,arguing that disability studies needed to engage more with feminist perspectives. Similarpoints were also made about ethnicity (Stuart 1993), sexuality (Shakespeare et al. 1996) andsocial class (Gallagher and Skidmore 2006). These challenges and critiques have continuedand have become stronger. They have also included critiques from beyond the discipline,critiques that have partly emerged as a result of its wider dissemination. As disability studieshas become more established and its influence has increased, not only has disability studiesimpacted on the way other disciplines have explored disability, so too have the ideas andconcepts from other disciplines had an impact on disability studies itself. Scholars in disabilitystudies are now drawing on increasingly varied sources of literature and ideas and in particulara growing body of work has taken a more poststructural stance (Goodley 2016). Further-more, a greater amount of research has been carried out that has unpacked disability througha variety of different approaches including ableism (ibid. 2014), normalcy (Thomas andSakellariou 2018), and embodiment (Stephens et al. 2015), which explores representationsand constructions of disability through discourse analysis (Grue 2016). These variousapproaches have sought to move beyond materialist accounts with an emphasis on the culturaland ideological underpinnings of disablement and ableism.

However, to describe disability studies as being at a crossroads was perhaps the wrong termto use, implying as it does, that a decision had to be made as to which way to turn. What hasactually happened is that the different approaches have co-existed, ideas have been shared,and new ways of looking at disability have emerged (Vehmas and Watson 2104; Goodley2016; McRuer 2018). This has been a really productive and, to date, cooperative period.Such cooperation is not surprising given that all of the approaches share common concernsand a desire to improve outcomes for disabled people.

In putting together this revised edition we have tried to take into account these changes inthe various approaches to tackling disability. There are 11 new chapters in the volume and 15of the remaining chapters have been updated to take account of changes in the field. Wehave tried to ensure that the plurality of approaches presented in the first edition is continuedin this collection. We have deliberately tried to include writing from across the rangeof approaches to disability studies, bringing together structural and poststructural accounts,critical realism, writings from within the arts and humanities, and law and technology studies.We hope that this book will contribute to the diversity of the discipline and in doing so willenrich our understanding of disability.

Structure of the book

The chapters in this collection cover most of the key debates in disability studies. It builds onand expands the first edition, introducing new topics and new approaches to the subject, andincludes writing on disability studies across the curriculum. The first edition was very wellreceived and acted as a major reference text in the development of disability studies. Ourhope is that this second edition will continue in that vein. The invited contributions are


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designed to help to further define and develop the social scientific approach to the study ofdisability. The chapters in this volume bring together established and leading scholars in thefield of disability studies together with some of the discipline’s rising stars. We deliberatelysought to include authors from all around the world, and to present an international collec-tion of writings. All of the contributors were asked to address the key challenging questionsin their area of expertise, to provide pointers as to the way ahead and to reflect on how theysee future developments within their particular areas of expertise.

As disability studies has matured it has moved beyond its original disciplinary bases and wewanted to produce a collection that reflects that development. We therefore sought toinclude authors from as wide a range of specialties as possible – combining the more tradi-tional sociological and social policy approaches with new perspectives. This, we feel, is amajor success of this collection. At its heart is a desire to bring together disciplines from acrossthe arts, humanities, and social sciences and to create a truly interdisciplinary approach to thestudy of disability. We have therefore included contributions from sociologists, social andpublic policy analysts, anthropologists, demographers, political scientists, philosophers, culturaltheorists, psychologists, historians and statisticians.

We have kept to the structure of the first edition and the chapters are arranged under fiveoverarching themes: theorising disability; disablement, impairment and impairment effects;health matters, social policy and disability; disability studies across the disciplines; and finally,experiences of disablement.

Part 1: Theorising disability

The collection opens with a section on theoretical approaches to disability within disabilitystudies, and what it is that makes disability studies both unique and dynamic. This defines thediscipline and illustrates how new theories of disability are having an impact on our under-standing. The first chapters explore how various approaches to disability have sought todefine the nature of disability. Colin Barnes, one of the key thinkers behind the developmentof the discipline in the UK, lays out the basic tenets of the quintessential social model ofdisability. In Chapter 2, Barnes restates his commitment to the social model and to what hesees as its lasting value at the core of disability studies. In this chapter, he lays out the originsof the social model and how it has influenced insights into disability both within and beyondthe academy. He also addresses many of its critics and concludes that without the socialmodel of disability, disability studies would not exist.

Margrit Shildrick, in Chapter 3, presents a very different perspective as she argues the case forcritical disability studies, developing what she terms a postconventional approach to disability.Bringing together ideas from feminism, postcolonial studies, and queer theory she challenges thecategories of disabled/non-disabled arguing for a rejection of conventional binary thinking. Sheargues that the way forward for disability studies is to deconstruct the very categories that definedisabled people as ‘different’ from their non-disabled peers. She suggests that such differences areneither viable nor sustainable; only by such a deconstruction can we further the position ofdisabled people and promote their inclusion and full participation in society.

In Chapter 4, David Mitchell and Sharon Snyder adopt a similar line, developing the argu-ments employed by Henri-Jacques Stiker in his History of Disability (1999). In this chapter,revised to take account of recent developments, the authors argue against the conventionalcategorisation of disability, suggesting that such an approach will not further the rights of dis-abled people and must be transcended. Many of the key theses in these opening three chaptersare taken up and engaged with in the rest of the book.


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Jerome Bickenbach has updated his chapter as he takes the debate on definitions in an alto-gether different direction. He argues that WHO’s International Classification of Functioning,Disability and Health (ICF) provides a useful epidemiological tool that allows for the generationof data that can help to make the case for equality and human rights for disabled people. He takeson and addresses, and in some cases accepts, many of the critiques of the ICF made by thoseworking within disability studies. His contribution finishes with a plea for further engagementwith the ICF by disability theorists, arguing that it is only through such engagement that the ICFcan be further refined to accommodate more sensitive and relevant indicators.

Lucy Series explores disability through a human rights paradigm. The chapter opens withan overview of human rights and then moves on to explore the UN Convention on theRights of People with Disabilities (CRPD). It argues that the CRPD was a landmarkachievement for disability activism and marked a paradigm shift in the approach to bothdisability and human rights. The chapter argues that they have yet to achieve their full impactand points to the fact that, to date, no country fully complies with all the provisions of theconvention. The critical question posed by the CRPD is what might full compliance looklike and what would this mean for disabled people. It is here that there is need for moredeliberation and study and this is where disability studies and the disabled people’s movementshould be focussing their attention.

Bill Hughes, in a revised chapter, employs ideas emerging from the sociology of emotionsand what Carol Thomas termed psycho-emotional disablism to explore how emotions areused to construct disability and our responses to disabled people. He examines how theemotions of fear, pity and disgust contribute to the social distance between disabled and non-disabled people and how they construct the discrimination and exclusion experienced.

Donna Reeve’s contribution, which has also been updated, continues the theme of emotions asshe explores the experience of psycho-emotional disablism per se. Chapter 8 offers a phenomen-ologically informed theoretical analysis of this inner dimension of disablism. Using the accounts ofdisabled people, she highlights both direct and indirect forms of this type of disablism and showsthe different ways in which ‘the body’ is also present when looking at their experiences.

Jan Grue and Michael Lundblad, in a newly commissioned contribution, engage with therelationship between disability and animality, focusing in particular on the ways differentkinds of lives are valued. The starting point of the chapter is a debate that took place betweenthe philosopher Peter Singer and the disability activist Harriet McBryde Johnson. The chapterunpacks this encounter as it seeks to explore the broader issues at stake, particularly whether acoalition between non-human animals and disabled people would be helpful, and what disabilitystudies and animality studies can learn from each other.

Nick Watson has updated his chapter, which concludes this section, and looks at the waythat disability studies has approached research on disability, focusing in particular on eman-cipatory research. The chapter argues that while research has been very successful in pointingout the disadvantages experienced by disabled people, and in providing evidence for theirexclusion, disability studies has failed to provide us with an understanding of what it is like tolive as a disabled person. This, he argues, is largely as a result of its reliance on emancipatoryresearch. The way forward is to adopt a more critical realist approach, and to explore boththe experience of disablement and the experience of impairment.

Part 2: disablement, disablism, and impairment effects

This section explores how different groups of people with particular types of impairment(‘real’ or ‘constructed’) have engaged with disability studies and the writings within the


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discipline, especially published ideas about the relationship between impairment and disable-ment. It opens Chapter 11 by Jackie Leach Scully on deafness, and examines how theexperiences of deafness are contained, or not, within disability theory. In doing so, she looksat both how disability studies has approached the idea of disability identity and why deafnessmight need to be considered differently, especially in view of the existence of the Deafcommunity and the concept of Deaf culture. She argues that deafness and disability should beunderstood as instances of embodied human diversity and that how they are experienced iscontextual rather than biological, arguing that the most decisive factor is the degree to whichthe normality of deafness is endorsed by family and community. This mirrors some of thearguments of Shildrick, and Mitchell and Snyder above.

In the next chapter, Kirsten Stalker examines how learning disabilities have been theorised, orrather not theorised, in disability studies. Not only were people with a learning disability absentfrom the original formulation of disability as defined by the Union of the Physically ImpairedAgainst Segregation in 1976, they have also, she argues, been largely absent from much that ispublished in the discipline. She presents an overview of the dominant theoretical frameworkswithin the academic study of learning disability and considers how these have had an impact onpolicymaking and service delivery. She is highly critical of some of the more recent post-structualist approaches to learning disability and concludes her chapter with an exploration ofhow critical realism might be the way forward for further development in this area.

Sasha Scambler has updated her chapter that explores the intersection between disabilityand critical illness and other long-term disabling conditions, the main causes of impairment inthe developed world. As in the previous chapter, Scambler makes the case for a realistapproach to the study of disability. Using the examples of diabetes and Batten disease sheargues that the study of long-term disabling conditions, and the people who live with themon a daily basis, can offer fresh insights into existing debates within the field of disabilitystudies. She also makes the case for much greater collaboration between medical sociologistsand disability theorists. The chapter finishes with a discussion about possible future directionsfor disability studies and how and why long-term disabling conditions should be an integralpart of this future.

The relationship between mental health and disability studies is the focus of Chapter 14.Richard Brunner, in a new addition to this collection, also employs critical realism, andAmartya Sen’s capability approach, to critically examine mental distress. The chapter describeshow mental health and mental illness have been covered in the social sciences, before movingon to explore the potential afforded by a critical realist account. In constructing his critique, hedraws on data analysed through a capability approach, arguing that this facilitates a lessreductive and deeper analysis of mental distress and, in particular, the causative factors thatunderpin it.

Speech impairment is another area that disability studies has not yet fully engaged with,and in Chapter 15 Kevin Paterson seeks to develop an understanding of ‘communicationdisablement’ from the standpoint of a person with speech impairment. He draws on phe-nomenology to argue that norms of communication are oppressive to people with speechimpairment but that disability studies has not been able to theorise this oppression. He arguesthat while it is possible to augment or facilitate communication for people with a speechimpairment, the temporal dimension of conversation cannot be accommodated and it isdifficult for people with speech impairment to acquire and sustain the physical and culturalcapital necessary to participate in everyday social encounters.

The final chapter in this section, again another new addition, by Ben Whitburn and RodMichalko, explores the potential for disability studies, with its diverse theoretical resources


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and approaches, to counter the ongoing marginalisation of people living with vision impair-ment through interrogating what they term ocular-centric and ocular-normative representa-tions of blindness. The chapter draws on writings from within critical disability studies toexamine the constitutive influence of linguistic conventions, and to emphasise relationalities –interdependent relationships between people with vision impairment and others, technology,animals and other non-human entities.

Part 3: social policy and disability: health, personal assistance,employment, and education

In this section we present a series of chapters that examine the policy response to the dis-ability ‘problem’. It starts with a new chapter from Karen Soldatic that explores neoliberalismas a regime of governance for disabled people. Through the lens of austerity the chapterunpacks the everyday forms of social suffering that have emerged for disabled people with theglobal mobility of neoliberalism. It argues that neoliberalism creates a social system of suf-fering, particular for the class of disabled people who are now deemed as partially disabled, i.e. those who are at the margins of the classification disabled/non-disabled. They are deniedaccess to benefits and are excluded from state-led redistribution.

Through these actions the state plays a central role in creating social, moral, and politicalunderstandings of disability. The relationship between the state and disabled people is themain focus of this section and is picked up in the next three chapters on employment, edu-cation, and independent living.

In Chapter 18, Rosa Morris interrogates the relationship between the organisation of workand the state. The chapter opens with an exploration of disabled people’s position in thelabour market and how employment opportunities are being influenced by changes in thenature of work, before going on to look at the effectiveness of the UK government’s policiesfor increasing employment rates among disabled people.

Michele Moore and Roger Slee in their chapter explore the foundations of educationalexclusion and consider emerging patterns of exclusion. They argue that as educational sys-tems have embraced a neoliberal ethic of competitive individualism so the exclusion of dis-abled children has increased. The solution to this, they argue, is for disability studies to beincluded in education as a strategy pursuant to inclusive education. This would criticallyengage with, and challenge, dominant and oppressive practices and promote the voices ofdisabled school children and students.

Charlotte Pearson, in a revised chapter, explores how the philosophy of independent livinghas emerged and evolved in the UK over the last 40 years and, in turn, has been utilised inpolicy for disabled people. From influencing policy shifts and securing a role in key areas ofpolicy development across the UK, she examines how the work of local and national dis-ability organisations have developed and how successive governments have responded to theneeds of disabled people. Yet underpinning policy change is a limited understanding acrossthe political spectrum as to what independent living means and what is necessary to achieveit. In looking at this, the chapter sets out how this position has worsened since the 2008economic downturn as social policies across many Organisation for Economic Co-operationand Development countries have systematically eroded the rights and independence of ageneration of disabled people. The chapter concludes by looking at the prospects forindependent living in a post-Brexit UK.

Scot Danforth, in a new addition, analyses diagnosis as a scientific construct, a socialpractice, and a political product that assigns meaning to human bodies and behaviour that are


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interpreted as deviant or problematic. He unpacks the historical development of the diagnosticsof phenomena such as learning disability and hyperactivity where the interests of professionals,parents, and other stakeholders in dialogue with scientific research resulted in the currentneuropsychological definitions. Danforth considers the social and political implications relatedto diagnosis and finishes with an exploration of the way in which disability activists haveinterrupted diagnostic solidity, stability, and oppression.

In Chapter 22, another new contribution to the collection, Nicola Burns examines migrationand disability. The chapter opens with a description of what we know and do not know aboutmigration and disability. It explores the role of race, its intersection with disability and how thisimpacts on thoughts about migration and disability before moving on to reflect on policies andhow they construct and constrain the opportunities for and experiences of migration for disabledpeople. Two key issues frame this debate: the dominance of the biomedical model, and theconstruction of disabled people as a burden on society.

In the final chapter in this section, Tom Shakespeare explores disability in the global southThis revised chapter argues that we still do not know enough about disability, and how it isexperienced, in many low- and middle-income countries. Moreover, in many of these countriesnot only is disability not well understood, it has also not been developed as an equality issue.Disabled people in the global south live in very disadvantaged conditions – far removed from theprevailing patterns in North America, Europe or Australasia. The chapter gives some examples ofgood practice in developing countries, but points out that many of these policies need to beevaluated and the results disseminated to share best practice. Shakespeare argues that there is aneed for policies that can promote equality in a way that is sensitive to local customs andtraditions.

Part 4: disability studies and interdisciplinarity

As disability studies has developed, so too has its links to other disciplines and it has movedbeyond its original disciplinary basis in sociology and social policy. In this section we presentfive chapters that explore how other disciplines have engaged with disability studies and howthat relationship has developed. The aim of this section is to show not only what other dis-ciplines can contribute to disability studies but what disability studies can contribute to them.

In Chapter 24, David Bolt has updated his exploration of disability and culture. He looks athow cultural studies and disability studies intersect, examining both how a cultural studiesapproach can deepen our understanding of disability and how the study of disability can enrichour understanding of culture. He points out that there has been a general reluctance withincultural studies to critically engage with disability studies, and to a certain extent vice versa –

and that both need each other. He makes a plea to those who work in literary studies, culturalstudies, film studies and media studies for disability studies to be taken more seriously.

In the next chapter, Simo Vehmas and Christopher Riddle present an overview of whatphilosophy has to offer disability studies. They show how philosophy and disability studiescan be combined to examine carefully the rational credibility, logical tenability and norma-tive soundness of the essential concepts and conceptions of disability studies. The chapterdiscusses the ontology of disability, ethics, and the moral significance of disability. Theauthors finish with a discussion on political philosophy, drawing on the ideas of Amartya Senand Martha Nussbaum and how the concept of capabilities can be used in relation to disabledpeople’s social status.

Dan Goodley has revised his chapter in which he explores the relationship between disabilitystudies and psychology, an area where there has been considerable conceptual conflict.


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Psychology, with its focus on rehabilitation, treatment, therapy and cure, coupled with itstendency to individualise the disability experience, is often seen as incompatible with disabilitystudies. Goodley argues, however, that combining the two approaches would facilitate theexploration of a number of important and neglected issues, including the psychological impact ofliving with impairment in a disabling society; exploring the ways in which disabled people dealpsychologically with demanding publics; and exposing non-disabled people’s unresolved,unconscious conflicts around difference. He makes the case for the development of a criticalpsychology of disability in which psychology is recast and becomes a discipline of and for disabledpeople, one that seeks to challenge the disabling conditions of everyday life.

In Chapter 27, Michael Rembis examines the relationship between historical scholarshipand disability theory. In this new addition to the collection he shows how recent historicalresearch has questioned, challenged, and reformulated the British social model of disability byengaging with the complex, relational nature of impairment. In this process, historians haveengaged with related fields such as the history of medicine, medical anthropology, andarchaeology in order to trace the experiences and representations of disabled people in thepast. He also argues that studying impairment and the history of the body provides a way torevise the social model and produce complex theorisation of impairment that is grounded inthe lived experiences of disabled people.

Brett Smith and Andrew Sparkes have revised their chapter on the intersection betweendisability and sport and leisure studies, and explore disabled people’s participation in bothelite sports and in more leisurely activities. They argue that this newly burgeoning area ofresearch in which disability studies and the social study of sports science are combined allowsfor an exploration of a range of issues including how participation can be promoted, thebarriers to participation, the impact of sport and leisure on an individual’s health and well-being, and how it affects non-disabled people’s views of disability and disabled people. Thechapter concludes by considering some possible directions of travel for research on disability,sport and physical activity.

In the final chapter in this section, Vasilis Galis unpacks and explores disability through thelens of science and technology studies. The chapter opens with an examination of the parallelpaths that disability studies and science and technology studies (STS) have followed in thehistory of ideas. It then moves on to use an STS approach to analyse disability as a relationalphenomenon, abandoning the focus on the individual body. The chapter shows the potentialafforded by STS as a way of uncovering disability.

Part 5: contextualising the disability experience

In this final section we present a series of chapters that examine disability and its intersection witha range of different social and political factors. The section opens with two chapters that focus onthe concept of intersectionality in relation to disability and gender and disability and ethnicity. Inthe first chapter Ana Bê revises her overview of how feminist scholars from within disabilitystudies have used feminism to develop and enrich our understandings of disability and to gen-erate a feminist disability studies. She argues that feminism has made a substantial contribution totheorisations of disability and that this has often gone unacknowledged. Her chapter finishes withan exploration of feminism and cultural disability studies. She points to the possibilities that thisapproach offers in readings of literary works and cultural representations.

Xanthe Hunt, in her chapter about disability and sexuality (a new addition to the collection),explicates the way non-disabled people pathologize disabled people’s sexuality, and view them asasexual or as less sexual than nondisabled people. She addresses sexuality as a multifaceted


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phenomenon and acknowledges that some impairments limit sexual participation but that eventhese experiences are heavily influenced by societal norms and myths about disability and sexuality.

The concept of intersectionality is introduced in Chapter 32. Here Deborah Stienstraexplores the intersectionality between race/ethnicity and disability studies. Stienstra calls forgreater reflexivity around issues to do with race/ethnicity and, in particular, on the ‘white-ness’ of disability studies. This involves the recognition that disability studies has largelyignored issues to do with ethnicity and cultural identity. She suggests that ‘White privilege’and the ability to use English has shaped the culture and practices of many services in NorthAmerica and that we need to unpack these experiences if we are to develop a truly inclusiveapproach to the study of disability.

The next three chapters all explore the intersection between disability and family. In thefirst, Claudia Malacrida has updated her exploration of the relationship between mothering anddisability. She highlights the dearth of information and understanding on the experiences andneeds of mothers with disabilities. She argues that this is often at the root of the challengesfaced by disabled women in giving birth to, raising and maintaining custody of their children.This, she argues, is the result of historical and enduring ideas about disability – impacting onthe right of disabled women to reproduce and rear children. She explores the intersectionsbetween disabled women’s multiple sources of oppression and their embodied relationships ofinterdependency. The chapter concludes with a call for more inclusive framings of disabilitywhich include gendered inequalities and a research approach that takes women’s specificallysituated perspectives into account.

Kinship forms the basis of Chapter 34. Janice McLaughlin has updated and revised herchapter exploring the intersection between disability and family. The chapter challengesdominant narratives about family and disability which emphasise ‘the burden’ disability pro-duces and the ‘special’ qualities of families who are able to ‘cope’. It critically examines theconcept of family, care, and caring responsibilities, the notion of interdependency and theeffects of therapy on family life. The chapter looks at the problems inherent in much researchwhich centres on the individual capacity of families to cope with disability due to their resi-lience. The impact of medical therapies and treatments on the lives of disabled families are alsoexplored. The chapter finishes by unpacking the meanings associated with care and the value ofrecognising the interdependencies which lie at the heart of all family life for challenging thesocial and institutional marginalisation of disabled people.

The final chapter in this collection, perhaps fittingly, looks at disability at the other end of thelife course, and examines the intersection between disability and ageing. Christine Bigby exploresthe issue of ageing for people with an intellectual disability, a relatively new group of disabledpeople that is emerging largely as a result of improvements in health care. She employs a lifecourse perspective and in doing so shows how important earlier experiences are in shaping thelife course and the ageing experience. Her chapter points to the importance of the good provi-sion of services and the importance of the family, of relationships, and the intersection betweenthe lived experience and the provision of good social care and social support.

References

Abberley, P. (1998) ‘The Spectre at the Feast: Disabled People and Social Theory’, The Disability Reader:

Social Science Perspectives, in T. Shakespeare (ed.) Disability Reader: Social Science Perspectives, London: A&CBlack, pp. 79–93.

Crow, L. (1996) ‘Including All of Our Lives: Renewing the Social Model of Disability’, in J. Morris (ed.)Encounters with Strangers: Feminism and Disability, London: Women’s Press, pp. 206–226.

Finkelstein, V. (1988) ‘To Deny Or Not to Deny Disability’, Physiotherapy 74(12): 650–652.


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Gallagher, D. J. and Skidmore, D. (2006) ‘On Social Class, Disability, and Discursive Spaces: Using DialogicalPedagogy to Promote Inclusive Education’, paper presented at Disability Studies in Education, MichiganState University.

Goodley, D. (2014) Dis/ability Studies: Theorising Disablism and Ableism, Abingdon: Routledge.Goodley, D. (2016) Disability Studies: An Interdisciplinary Introduction, London: SAGE.Grue, J. (2016) Disability and Discourse Analysis, Abingdon: Routledge.Hadley, B. J. and McDonald, D. (2018) The Routledge Handbook of Disability Arts, Culture, and Media,

Abingdon: Routledge.Hasler, F. (1993) ‘Developments in the Disabled People’s Movement’, in J. Swain, V. Finkelstein, S.

French and M. Oliver (eds) Disabling Barriers – Enabling Environments, London: SAGE.McRuer, R. (2018) Crip Times: Disability, Globalization, and Resistance, New York: New York University Press.McTier, A., Macdougall, L., McGregor, A., Hirst, A. and Rinne, S. (2016) Mapping the Employability Landscape

for People with Learning Disabilities in Scotland, Glasgow: Scottish Consortium of Learning Disability. Availableat www.scld.org.uk/wp-content/uploads/2016/08/SCLD-Report-Web.pdf (accessed 23 June 2019).

Morris, J. (1991) Pride against Prejudice, London: Women’s Press.Oliver, M. (1983) Social Work with Disabled People, Basingstoke:Macmillan.Oliver, M. (1990) Politics of Disablement, London: Macmillan International Higher Education.Oliver, M. (2013) ‘The Social Model of Disability: Thirty Years On’, Disability and Society 28(7): 1024–1026.Ryan, S. (2017) Justice for Laughing Boy: Connor Sparrowhawk – A Death by Indifference, London: Jessica

Kingsley.Shakespeare, T. (2013) Disability Rights and Wrongs Revisited, Abingdon: Routledge.Shakespeare, T., Gillespie-Sells, K. and Davies, D. (1996) The Sexual Politics of Disability: Untold Desires,

London: Burns & Oates.Shakespeare, T., Iezzoni, L. I. and Groce, N. E. (2009) ‘Disability and the Training of Health Professionals’,

The Lancet 374(9704): 1815–1816.Shakespeare, T., Gillespie-Sells, K. and Davies, D., 1996. The Sexual Politics of Disability: Untold Desires,

London: Burns & Oates.Smith, K. (2013) Beyond Evidence Based Policy in Public Health: The Interplay of Ideas, London: Springer.Stephens, L., Ruddick, S. and McKeever, P. (2015) ‘Disability and Deleuze: An Exploration of Becoming

and Embodiment in Children’s Everyday Environments’, Body & Society, 21(2): 194–220.Stiker, H. J. (1999) A History of Disability, Ann Arbor: University of Michigan Press.Stuart, O. (1993) ‘Double Oppression: An Alternative Starting Point’, in J. Swain, V. Finkelstein, S.

French and M. Oliver (eds) Disabling Barriers – Enabling Environments, London: SAGE.Tinson, A., Aldridge, H., Born, T. B. and Hughes, C. (2016) Disability and Poverty: Why Disability Must Be

at the Centre of Poverty Reduction, York: New Policy Institute.Thomas, C. (1999) Female Forms: Experiencing and Understanding Disability, London: McGraw-Hill Education.Thomas, G. M. and Sakellariou, D. (eds) (2018) Disability, Normalcy, and the Everyday, Abingdon: Routledge.Union of the Physically Impaired Against Segregation (UPIAS) (1976) Fundamental Principles of Disability,

London: Union of the Physically Impaired Against Segregation. Available at www.leeds.ac.uk/disability-studies/archiveuk/index.html.

Vehmas, S. and Watson, N. (2014) ‘Moral Wrongs, Disadvantages, and Disability: A Critique of CriticalDisability Studies’, Disability & Society 29(4): 638–650.

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http://www.scld.org.uk/

http://www.leeds.ac.uk/


2

UNDERSTANDING THE SOCIALMODEL OF DISABILITY

Past, present and future

Colin Barnes

Introduction

As someone with a congenital visual impairment with working-class disabled parents, I grewup with impairment and disability. I found the social model of disability in the 1980s in abook by Mike Oliver (1983), Social Work with Disabled People, when I went to university tostudy disability. The book summarised what I already knew about disability: that people withany form of accredited impairment are disabled by an unjust and uncaring society. Thisnotion has influenced my work ever since. Subsequently, thinking inspired by the socialmodel has had a major impact on policy circles and universities around the world. Yet inmany respects there remains a general misunderstanding about what the social model actuallyis and what it is for.

This chapter will address this unfortunate state of affairs, in particular the debates sur-rounding the usefulness of the social model within the academy. It is divided into threemain sections. The first section will examine the origins of the social model. This is fol-lowed by a review of the influence that the social model has on insights within and beyondthe academy. The final section will address the various debates that have emerged since thelate 1990s and argue that, without the social model of disability, disability studies will berendered meaningless. Therefore, the struggle for a fairer and more just society will be thatbit harder.

The origins of the social model

In order to understand the significance of the implications of social model reasoning it isimportant to remember that until very recently ‘disability’ was viewed almost exclusively asan individual medical problem or a ‘personal tragedy’ in Western culture. Yet there is awealth of anthropological and sociological evidence to suggest that societal responses topeople with impairments or long-term health conditions vary considerably across time,culture and location (see, for example, Hanks and Hanks 1948; Lemert 1951; Ingstad andWhyte 1995; Miles 1995, 2001; Ingstad 2001).

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The philosophical and cultural basis upon which the individualistic negative response toimpairment rests is rooted firmly in the foundations of Western culture. While the vastmajority of people with impairments were integrated into the community prior to theIndustrial Revolution, there is substantial evidence that oppression and prejudice was wide-spread (Ryan and Thomas 1980; Garland 1995; Stiker 1999). There is also general agreementthat the economic and social upheavals that accompanied the coming of industrial capitalismprecipitated the institutionalisation of discriminatory policies and practices. Industrialisation,urbanisation, changing work patterns and accompanying ideologies, liberal utilitarianism,medicalisation, eugenics, and social Darwinism – all of these things contributed to andcompounded ancient fears and prejudices. Taken together, these structural forces providedintellectual justification for more extreme discriminatory practices, notably the systematicremoval of disabled people from mainstream economic and social life (Finkelstein 1980;Oliver 1990; Barnes 1990, 1991, 1997; Gleeson 1999; Borsay 2005).

Since the mass ‘euthanasia’ policy for disabled people, defined as ‘useless eaters’, introducedby Germany’s Nazi government in the 1930s and 1940s (Gallagher 1995; Burleigh 1994), therehas been a general ‘softening’ of attitudes in policy circles in wealthy states such as the UnitedKingdom, Europe and the United States. This led to an expansion of community-based ser-vices provided by state and voluntary agencies and a proliferation of professional helpersunderpinned by traditional deficit understandings of disability (Oliver 1981; Brisenden 1986;Barnes 1991; Morris 1993; Priestley 1999).

This policy change was the result of several factors. These included a moral obligation feltby politicians and the general population towards the large number of civilians and militarypersonnel who had been injured during the Second World War. There was also unprece-dented growth in the number of disabled and elderly people due to increasing affluence andmedical advances. All of this contributed to the politicisation of disability by disabled peopleand the organisations that represented their interests during the latter half of the twentiethcentury in countries as diverse as Sweden (Höjer 1951; Nordqvist 1972), the UK (Hunt1966a; Campbell and Oliver 1996; Barton 2001), the United States (De Jong 1979; Scotch1989; Shapiro 1993) and Japan (Tateiwa 2010).

In the UK, disability activism revolved around a rejection of ‘residential care’ and control bywhat Finkelstein (1999) termed ‘professionals allied to medicine’, poverty and the exclusion ofdisabled people from mainstream economic and social activity. Until the late 1960s support for‘severely’ disabled people was generally unavailable outside institutions and there were no dis-ability-related welfare payments. Consequently, ‘severely’ disabled people were either incar-cerated in residential homes run by professionals or lived within the community in relativepoverty and social isolation. A crucial factor for all disabled people and their families at this timewas a lack of money, which resulted in the formation of the Disabled Incomes Group (DIG)by two disabled women in 1965 (Campbell and Oliver 1996).

DIG attracted the attention of disability activists across the country. These included future keyfigures in the UK’s disabled people’s movement: Paul Hunt, Vic Finkelstein, Maggie Hines andKen Davis. They soon rejected the narrow incomes approach favoured by DIG and later theDisability Alliance (DA). The DA brought together several disability organisations to campaignfor a comprehensive disability income. Disillusioned by this approach and its domination bynon-disabled ‘experts’, Hunt, Finkelstein and Davis, along with other like-minded disabledactivists, set up the Union of the Physically Impaired Against Segregation (UPIAS) in 1974(UPIAS 1976).

Undoubtedly the most influential organisation in the history of social model thinking,UPIAS functioned mainly through confidential correspondence and circulars distributed

Understanding the social model of disability

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among its members. Drawing on personal experience and sociological insights, UPIASmembers, none of whom were trained sociologists, argued that disability was a complex formof social oppression similar to that encountered by women, ethnic minorities, lesbians andgay men. An early expression of this view is found in Stigma: The Experience of Disability: abook of 12 personal accounts of living with impairment by six disabled men and six disabledwomen, initiated and edited by Paul Hunt, then a resident of the Le Court residential homein Hampshire, UK (Hunt 1966a).

Hunt selected the chapters from over 60 responses to a letter he had published in nationalnewspapers and magazines requesting contributions. His aim was to avoid ‘sentimental auto-biography’ or a ‘preoccupation with the medical and practical details of a particular affliction’.In his chapter, Hunt argues that ‘the problem of disability lies not only in the impairment offunction and its effects on us individually but more importantly in our relationship with“normal” people’ (1966b: 146, emphasis added).

Disabled people ‘are set apart from the ordinary’ in ways which see them as posing a direct‘challenge’ to commonly held social values by appearing ‘unfortunate, useless, different,oppressed and sick’ (ibid.).

Thus, for UPIAS, lack of income is a symptom rather than a cause of disabled people’sindividual and collective disadvantage:

Disability is something imposed on top of our impairments by the way we areunnecessarily isolated and excluded from society. Disabled people are therefore anoppressed group. It follows from this analysis that having low incomes, for example, isonly one aspect of our oppression. It is a consequence of our isolation and segregationin every area of social life, such as education, work, mobility, housing etc.

(UPIAS 1976: 4)

In contrast to previous definitions that cited impairment as the cause of disability and ‘han-dicap’ (Harris et al. 1971), UPIAS produced a sociopolitical definition of disability that madethe crucial distinction between the biological (impairment) and the social (disability). Hence,‘impairment’ denotes ‘lacking part or all of a limb, or having a defective limb or mechanismof the body’ but ‘disability’ is ‘the disadvantage of restriction of activity caused by a con-temporary social organisation which takes no or little account of people who have physicalimpairments and thus excludes them from participation in the mainstream of social activities’(UPIAS 1976: 14).

Subsequently, the restriction to ‘physical impairments’ was dropped to incorporate allimpairments – physical, sensory and cognitive. This is because some conditions, both congenitaland acquired, affect all bodily functions and in a disablist society all impairments – whatevertheir cause – have to a greater or lesser degree negative physical and psychological implications.Also, impairment-specific labels may have relevance when accessing appropriate medical andsupport needs, but they are usually imposed rather than chosen and are therefore socially andpolitically divisive (Barnes 1996; Oliver and Barnes 1998).

Thereafter, the UPIAS definition was adopted and adapted by national and internationalorganisations controlled and run by disabled people. These included the British Council ofOrganisations of Disabled People (BCODP), the national umbrella for organisations controlledand run by disabled people in the UK, and Disabled Peoples’ International (DPI), aninternational body for national organisations like BCODP (Campbell and Oliver 1996).

Other important developments during the 1970s included increased disability activism inthe United States and the emergence of the Independent Living Movement (ILM). The ILM


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emerged partly from within the campus culture of American universities and partly fromrepeated efforts by American disability activists, swelled by the growing number of disabledVietnam War veterans, to influence US disability legislation. During the 1960s some Americanuniversities introduced various self-help programmes to enable students with ‘severe’ phy-sical impairments to attend mainstream courses. Such schemes were rarely available outsideuniversity campuses. This prompted some disabled students to develop their own servicesunder the banner of Centres for Independent Living (CILs) (De Jong 1979).

Unlike conventional services for disabled people, CILs are self-help organisations runand controlled by disabled people. Traditional professionally dominated provision focusedalmost exclusively on medical treatments and therapies within institutional settings thateffectively removed disabled people from everyday life. In contrast, CILs provided a newand innovative range of services designed to empower people with impairments for alifestyle of their own choosing within, rather than apart from, the local community. Theactivities of the ILM had a significant impact on activists in the UK and led to theestablishment of user-led organisations that provided services and support for disabledpeople and their families. Early examples include the Spinal Injuries Association (SIA),established in 1973. The UK’s first CILs, the Hampshire Centre for Independent Living(HCIL) and the Derbyshire Centre for Integrated Living (DCIL), opened in 1985 (Barnesand Mercer 2006).

The 1970s also witnessed the introduction of various legislative measures and policyinitiatives to address disability issues. In the UK, the Chronically Sick and Disabled Person’sAct entered the statute books following a Private Members’ Bill by a Labour Member ofParliament, Alf Morris, in 1970. The Act is widely regarded as the first piece of legislation inthe world to introduce policies to improve equal opportunities for disabled people in com-munity-based services, education, housing and public buildings (Topliss and Gould 1981).Three years later, the US Congress passed the 1973 Rehabilitation Act, which includedSection 504 prohibiting discrimination against disabled people in any federally funded pro-gramme. The United Nations (UN) introduced its Declaration on the Rights of MentallyRetarded Persons in 1971 and the Declaration on the Rights of Disabled Persons in 1975.The latter states that:

Disabled persons, whatever the origin, nature and seriousness of their handicaps anddisabilities, have the same fundamental rights as their fellow-citizens of the same age,which implies first and foremost the right to enjoy a decent life, as normal and fullas possible.

(UN 1975, Art. 3)

Growing interest in disability at the international level led in 1980 to the World Health Orga-nization’s (WHO) first attempt to provide a universally acceptable definition of disability – theInternational Classification of Impairment Disability and Handicap (ICIDH) – and a year laterthe UN’s International Year of Disabled People.

The ICIDH was developed by a group of social scientists led by Philip Wood at theUniversity of Manchester without the involvement of disabled people. Published in 1980,four years after the launch of the UPIAS definition, the stated aim of the ICIDH was toclarify concepts and terminology surrounding disability in order to facilitate accurate andcomparable research and policy within and across nation-states (Bury 1997). Designed tocomplement WHO’s International Classification of Disease (WHO 1976), the ICIDHseparates the concepts impairment, disability and handicap as follows:


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� Impairment: any loss or abnormality of psychological, physiological or anatomicalstructure or function.

� Disability: any restriction or lack (resulting from an impairment) of ability toperform an activity in the manner or within the range considered normal for ahuman being.

� Handicap: a disadvantage for a given individual, resulting from an impairment ordisability, that limits or prevents the fulfilment of a role (depending on age, sex,social and cultural factors) for that individual.

(Adapted from WHO 1980: 29)

The ICIDH has been subject to several criticisms by disabled activists and allies. First, it reliesexclusively on individualistic medical definitions and biophysical assumptions of ‘normality’.However, ‘normality’ is a contentious concept influenced by various historical, cultural andsituational forces (Abberley 1993; Davis 1995). Second, ‘impairment’ is identified as the cause ofboth ‘disability’ and ‘handicap’. Although handicap, or social disadvantage, is presented as neutraland the inevitable consequence of either impairment or disability, this is difficult to sustain. Manyimpairments do not inhibit an individual’s physical or intellectual capability. Examples includeshort stature, hair loss and skin blemishes. What is and what is not an impairment is historically,culturally and socially variable. For example, homosexuality is no longer considered an impair-ment in some cultures but in others it is (Weeks 1991). Handicap is therefore ideologically andculturally determined; neither ideology nor culture is politically neutral.

Finally, this approach places people with an actual or accredited impairment in a depen-dent position. Their condition is individualised and medicalised and therefore assumes thatthey are reliant upon professional experts and others to provide therapeutic and social sup-port. As impairments are presented as the root cause of disability, logic dictates that they mustbe eradicated, minimised or ‘cured’. But where ‘cures’ are ineffective, which more often thannot is the case, people labelled ‘disabled’ are viewed as economically and socially inadequateand in need of ‘care’. This has resulted in the generation of a thriving and costly ‘disability’industry comprising state institutions, private businesses, charities and voluntary agenciesstaffed by vast armies of professional helpers. The result is that disabled people’s assumedinadequacy and dependence is reified and assured (Stone 1984; Wolfensberger 1989;Albrecht 1992; Oliver 1990).

The growing interest in disability issues at the international level led to the UN declaring 1981the International Year of Disabled People. This signified a formal recognition that nationalgovernments are responsible for securing equal rights for disabled people. The following year theUN General Assembly adopted by consensus a World Programme of Action Concerning Dis-abled Persons and a global strategy on the prevention of disability. Other international initiativesquickly followed, including the African Decade of Persons with Disabilities (2000–2009), theEuropean Year of People with Disabilities 2003, the Asian and Pacific Decade of DisabledPersons (2003–2012) and the Arab Decade of Disabled Persons (2003–2012) (Albert 2006).

Also in 1981, disabled activists formed DPI. This was established because of RehabilitationInternational (RI)’s refusal to accept the equal participation of disabled delegates on its con-trolling body. Formed in 1922 as the International Society for Crippled Children, RI is aninternational organisation for rehabilitation professionals (Driedger 1989: 18). DPI’s firstworld congress was held in Singapore in the following year and attracted 400 delegatesrepresenting national organisations run by disabled people from around the world, includingrepresentatives of BCODP. As well as adopting a sociopolitical definition of disability, DPI’sstated policy revolves around the promotion of grassroots organisations and the development


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of public awareness of disability issues in the struggle for equality. Its slogan ‘Nothing AboutUs Without Us’ has been embraced by disabled people’s organisations around the globe(Charlton 1998). Taken together, these forces were instrumental in the thinking behind theuse of the phrase ‘the social model of disability’.

The arrival and impact of the social model

Prior to the 1970s, apart from one or two notable exceptions, academic interest in disabilitywas limited almost exclusively to conventional, individualistic medical explanations. Animportant example is Talcott Parsons’s (1951) functionalist analysis of the role of the medicalprofession. For Parsons, ‘health’ is ‘normal’ and ‘sickness’ (and by implication ‘impairment’) isnot and is therefore socially deviant. The role of medicine is to regulate and control sickness bycuring and returning ‘sick’ people back to good health. Although this account is concernedwith ‘acute’ rather than ‘chronic’ conditions, it has dominated sociological analyses of reactionsto and the management of ascribed social deviance, including disablement, ever since (Barnesand Mercer 2003, 2010).

A notable example is Erving Goffman’s (1968) account of the interactions between ‘normal’and ‘abnormal’ people. Also during the 1960s, particular attention was paid to the social con-struction of ‘mental illness’. Examples include Scheff (1966), Szasz (1971) and Rosenhan (1973).The idea that mental illness and other forms of ascribed social deviance are little more than socialconstructs generated by an increasingly dominant and moralistic social order was given a furtherboost by the writings of the French philosopher Michel Foucault (1976, 1977).

Consequently, academic interest in the general area of ‘disability’ increased. Notable pub-lications in the UK include The Meaning of Disability (Blaxter 1976) and Poverty in the United

Kingdom (Townsend 1979); American examples include The Making of Blind Men (Scott1969), The Sociology of Physical Disability and Rehabilitation (Albrecht 1976) and Handicapping

America (Bowe 1978). But while each of these studies drew attention to the various economicand social consequences of the ascription of a conventional ‘disabled’ identity, none madeany serious attempt to question its ideological and cultural underpinnings. The theoreticalinsights applied to the concept of cognitive impairments were never extended to addressother conditions and, particularly, ‘physical disability’. The groundwork for this endeavourwas laid by writers such as Finkelstein (1980), Attitudes and Disabled People; Ryan and Thomas(1980), The Politics of Mental Handicap; Shearer (1981), Disability: Whose Handicap; Sutherland(1981), Disabled We Stand; and the emergence of what is now referred to as disability studies.

The UK’s first ‘disability’ studies course, ‘The Handicapped Person in the Community’, wasconceived and produced by an interdisciplinary team at the Open University (OU) in 1975 asan optional module on the OU’s Health and Social Studies Bachelor’s degree. A key figure inthe development of this course was Vic Finkelstein, a clinical psychologist and foundingmember of UPIAS. Initially aimed at professionals and voluntary workers, the course’s primaryobjective was to help students to improve their ‘professional and social skills in order to assisthandicapped people to achieve maximum autonomy’ (Finkelstein 1997: 41, emphasis added).From the outset the course was criticised for its ‘sociological bias’ (ibid.: 46). It was updatedtwice before its abolition in 1994, and each time more and more disabled people wereinvolved in the production of course materials. The final version of the programme was retitled‘The Disabling Society’ to reflect its wider content. Over the years, the OU team generated awealth of material that provided the basis for the development of a whole host of disabilitystudies-related courses and professional training schemes at both undergraduate and post-graduate level in mainstream colleges and universities across the UK (Barnes et al. 2002a).


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Disability studies was pioneered in American universities by disability advocates and academics.The first course, structured around ‘living with a disability’, was situated in the general area ofmedical sociology (Pfeiffer and Yoshida 1995: 476). In 1981 Irving Zola, a disabled sociologistand chairperson of the medical sociology section of the American Sociology Association, foun-ded the Disability Studies Quarterly and co-founded the USA’s Society for Disability Studies. Atthe turn of the 1980s 12 disability studies courses at various levels were offered by Americaninstitutions. By 1986 the number had risen to 23 (Pfeiffer and Yoshida 1995).

Taken together, these developments led Mike Oliver, a disabled activist and lecturer, to cointhe phrase ‘social model of disability’ in his contribution to a collection of five papers edited bya practising social worker, Jo Campling, in 1981, entitled The Handicapped Person: A New Per-

spective for Social Workers. Campling’s previous work had included Better Lives for Disabled Women

(1979) and Images of Ourselves: Women with Disabilities Talking (1981); both of which focused onwomen’s experiences of living with impairment in the UK during the 1970s. Oliver’s initialaim was to provide an accessible key to understanding the importance of UPIAS’s definition ofdisability and its implications for policy and practice for social work students. Hence, ‘This newparadigm involves nothing more or less fundamental than a switch away from focusing on thephysical limitations of particular individuals to the way the physical and social environmentimpose limitations upon certain categories of people’ (1981: 28).

It is therefore an ‘heuristic device’, or aid to understanding, which entails the adoption ofthe following key principles.

First, a social model perspective is not a denial of the importance or value of appropriateindividually based interventions, be they medically, re/habilitative, educational or employ-ment-based. Instead, it draws attention to their limitations in terms of furthering disabledpeople’s empowerment. Second, the social model is a deliberate attempt to shift attentionaway from the functional limitations of individuals with impairments onto the problemscaused by disabling environments, barriers and cultures. In short, the social model of disabilityis a tool with which to provide insights into the disabling tendencies of modern society inorder to generate policies and practices to facilitate their eradication. For advocates, impair-ment may be a human constant but ‘disability’ need not and should not be. Although theconcept ‘social model’ has been linked to several sociological theories of disability (Priestley1998), it is generally associated with materialist perspectives (adapted from Oliver 1996, 2004;Barnes 1996; Barnes and Mercer 2003, 2010).

Even so, social model insights were ignored by many social scientists in the UK until the turn ofthe millennium. Sociologists in particular continued to favour a ‘conventional’ functionalistdeviance approach, albeit within a broader sociological framework. This has generated a growingliterature on the mechanisms and processes by which people adapt to the onset of ‘chronic illness’and impairment (see, for example, Anderson and Bury (1988). This burgeoning ‘sociology ofchronic illness and disability’ has dampened down sociological interest in the wider social processesthat create disability and as a result produced little by way of theory and research (Thomas 2007: 40).

The bulk of this literature focuses almost exclusively on the ‘failing body’ and ‘personal trou-bles’, disregarding the significance of social barriers to inclusion. This has recently been acknowl-edged by some medical sociologists such as GarethWilliams (2001) and Graham Scambler (2004).The latter provides a reappraisal of his earlier work on stigma in which he identifies a ‘hiddendistress model’ of epilepsy (Scambler 1989). He now maintains that this approach is at best ‘partialand at worst deficient in its failure to address sociologically a series of theoretical questions’ (ibid.2004: 29, emphasis in the original). Yet this critique does not reject or abandon the medicallydominated perceptions of impairment as social deviance. Instead, the deviance perspective mustbe strengthened with the development of a ‘new’ research agenda based on the assertion that:


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Any appreciation of why and how epilepsy persists as a significant condition must bearticulated against the background of the logics of capitalist accumulation (of theeconomy) and mode of regulation (of the state) and their respective relations of classand command.

(ibid.: 42)

It is perhaps testament to the inward-looking practices of many medical sociologists, andacademia generally (Barnes et al. 2002b), that Scambler chose to ignore the wealth of materialalready produced by disabled people and the organisations that represent them as well as bywriters working from a social model perspective in the UK and elsewhere that deal withthese very issues.

Indeed, the social model had become the ‘big idea’ (Hasler 1993) and a key factor in themobilisation of disability activism during the 1980s and 1990s. Notable examples include thestruggle for anti-discrimination legislation to outlaw discrimination against disabled people andthe campaign to legalise direct payments to enable disabled people to employ their own supportworkers (Campbell and Oliver 1996). At its inception in 1981 BCODP had seven memberorganisations; its membership had increased to 80 by 1990 (Barnes 1991: 6). Disabled activistsdeveloped a range of innovative user-led initiatives, including a national network of telephoneDisability Information and Advice Lines (DIAL) (Davis 1981), integrated accessible housingschemes for disabled and non-disabled residents (Davis and Woodward 1981) and direct pay-ments to enable disabled people to employ personal assistants (HCIL 1981).

In a paper inspired by a ‘social barriers model of disability’, Ken Davis describes how theDCIL implemented a comprehensive ‘operational framework’ for service support based onseven needs and priorities formulated by disabled people. These included information, peercounselling and support, accessible housing, technical aids and equipment, personal assistance,accessible transport and access to the built environment (1990: 7). By the turn of the decadethere were at least 85 user-led CIL-type organisations offering or aspiring to offer these andother services for disabled people and their families (Barnes and Mercer 2006).

The politicisation of disability also prompted the emergence of a burgeoning disabilityculture and arts movement. This includes disabled artists, musicians, poets and film-makers.The general aim is to give expression to the experience of living with impairment in a dis-abling society and to help to generate a celebration of difference and a positive disabledidentity (Sutherland 1997, 2006; Peters 2000; Swain and French 2000). The social model wasalso central to the development of disability equality.

These activities generated an expanding literature produced mainly by disabled writers. A keyfactor was the establishment in 1986 of the first international journal devoted exclusively to dis-ability issues, Disability, Handicap and Society, which was renamed Disability & Society in 1993.Disabled researchers inspired by social model thinking produced ethnographic accounts ofcoming to terms with impairment and disability. Examples include, Morris (1989) and Barnes(1990). Building on UPIAS’s insights and Finkelstein’s (1980) account of the link betweencapitalism and the emergence of the disability category, Oliver produced the first comprehensivematerialist theory of disability in 1990 entitled The Politics of Disablement. The following yearBCODP produced Disabled People in Britain and Discrimination: A Case for Anti-Discrimination

Legislation (Barnes 1991) to bolster its campaign for an anti-discrimination law.Social model thinking was instrumental to the development of Disability Equality Training

courses devised and presented by disabled people. Primarily aimed at professionals and practi-tioners, these courses focus on environmental and social barriers to generate possible solutions(Gillespie-Sells and Campbell 1991). These courses differ from Disability Awareness Training,


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presented by non-disabled professionals, which tends to reaffirm disability as an individualproblem through the use of simulation exercises (French 1996).

The year 1991 also heralded the emergence of a new approach to doing disability researchfounded on social model principles that placed disabled people and a social model approachat the centre of the research process – emancipator disability research (DHS 1992). There-after, a host of studies appeared focusing on a range of disability issues and conducted mainlyby disabled researchers. Examples include disabling imagery and the media (Barnes 1992;Hevey 1992; Cumberbatch and Negrine 1992), ageing and disability (Zarb and Oliver 1993),direct payments and personal assistance (Oliver and Zarb 1992; Barnes 1993; Zarb andNadash 1994), independent living (Morris 1993), ethnicity and ‘race’ (Begum 1992; Begumet al. 1994), sexuality (Shakespeare et al. 1996), parenting (Wates 1997) and employment(Roulstone 1998).

All of this has had a major influence on disability policy. In 1992 the British governmentacknowledged for the first time that disability discrimination was a major problem and threeyears later the Disability Discrimination Act became law. In 1996 the Community Care(Disabled Persons) Act allowed local authorities to offer direct payments to disabled people.Hitherto, this was technically illegal under the 1948 National Assistance Act (Zarb andNadash 1994). The Disability Rights Commission (DRC) was established in 2000 andemployed a social model definition of disability (DRC 2002). The government formallyadopted a social model definition in its 2005 report entitled Improving the Life Chances of

Disabled People (PMSU 2005). Social model rhetoric – if not policy – is now clearly evidentin the publications of a host of agencies dealing with disability and related issues in both thestatutory and voluntary sectors across the UK (Oliver and Barnes 2006; Shakespeare 2006;Barnes and Mercer 2010).

Social model thinking is also evident in policy statements and documents at the interna-tional level. In 1993 the UN produced the Standard Rules on the Equalization of Opportunity for

People with Disabilities. This document outlines a radical programme for governments tofollow in identifying and securing equality for disabled people (UN 2003/2004). The UN’sConvention on the Rights of Persons with Disabilities and its Optional Protocol wereadopted in December 2006. Negotiated over eight sessions attended by an ad hoc committeeof the General Assembly, including representatives of disability organisations, it marks the firsthuman rights treaty of the twenty-first century. With 50 articles, the Convention is the mostcomprehensive document ever to be produced on the rights of disabled people (UN Enable2009). The European Union sanctioned the social model of disability in its policy ActionPlan of 2003 (Commission of the European Communities 2003: 4).

A social model perspective played a key role in ‘Rethinking Care from Disabled People’sPerspectives’, sponsored by WHO’s Disability and Rehabilitation Team. This was a two-yearproject and conference supported by the Norwegian government that involved professionals,disabled people and their families from all over the world (WHO 2001). Furthermore,WHO’s recent International Classification of Functioning and Health (ICF), which replacedthe much maligned ICIDH, also claims to incorporate social model insights in its construc-tion (WHO 2005). While there is not the space here to provide an extensive critique of theICF, it suffices to point out that it is a three-tier construct, albeit with different terms fordisability and handicap – ‘activity’ and ‘participation’, respectively – and founded on Westernnotions of ‘scientific’ medicine and normality. Furthermore, the ICF is presented as apoliticaland acknowledges the role of the environment in shaping our understanding of disability.Yet the inference that impairment is the main cause of disablement is clearly retained in itstitle: the ‘biopsychosocial’ model of disability (Barnes and Mercer 2010).


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In addition, due to the critique of its activities from disabled people and the organisationsthat represent them (Hurst and Albert 2006) and the appointment in 2004 of Judy Heumann,a key activist in America’s disabled people’s movement as principal adviser on disability anddevelopment (Coleridge 2006), the World Bank has since adopted a policy of ‘mainstreamingdisability’ in all its programmes. In 2007 it published its Social Analysis and Disability: A Guidance

Note, which ‘offers a practical guide to integrating social analysis and disability inclusivedevelopment into sector and thematic projects and programs of the World Bank’ (p. 1).

However, although this document focuses on the importance of disability rights andinstitutional change, the guidelines presented therein are not binding. Their impact dependson various factors including the project or programme, local context and, most importantly,‘available resources’ (World Bank 2007: 2). These must come from other sources such asinternational non-governmental organisations, non-governmental organisations and charities.The Bank is neither a charity nor a human rights organisation. Its policies are determined by aneoliberal/capitalist philosophy that strongly upholds the interests of big business and transna-tional corporations. Its primary function is to provide loans for economic development, whichhave to be repaid (Yeo 2005).

Moreover, many governments, as diverse as those of the United States and the People’sRepublic of China, have employed social model rhetoric to introduce policies to securedisabled people’s rights (Doyle 2008). Yet these policies have had only a marginal impact onthe growing numbers of people labelled disabled in both rich and poor countries alike(Charlton 1998; Albert 2006; Chen and Ravallion 2008; Inclusion Europe 2008; Sheldon2010). All of the above raises important issues for the growing number of academics andresearchers engaged in disability studies.

The social model and its discontents

Since the 1980s there has been an unprecedented upsurge of interest in the general area ofdisability among social scientists in universities and colleges around the world. This hassparked an increase in the number of journals dealing with disability issues and networks ofresearchers studying disablement from a variety of academic disciplines. Disability studies isnow an internationally recognised academic discipline, supported by courses, research centresand professorial chairs (Barnes et al. 2002a). This is to be welcomed as it raises the profile of dis-ability issues in colleges and universities – the seedbeds for tomorrow’s politicians, policymakersand professionals. Owing to this heightened interest, a number of important challenges to socialmodel thinking have perhaps inevitably emerged which raise concerns about the discipline’sfuture direction and role in society.

As indicated earlier, theoretical analyses of disability in the UK and the United States arerooted in the political activities of disabled people in the 1960s and 1970s. The Americanapproach, however, differed from that of the UK in that it was dominated by professionalacademics and adhered to a conventional functionalist/deviance analysis commensurate withAmerican ideology and culture – ‘radical consumerism’ and ‘independent living’ (De Jong1979). By way of contrast, the foundations for a more comprehensive and radical socialmodel-inspired materialist analysis were laid by disabled activists from outside the academy(Barnes et al. 2002a).

This perspective is still prominent within the disability studies agenda in the UK andelsewhere (Charlton 1998; Gleeson 1999; Hahn 2002). However, its significance has beenseriously undermined over recent years by the emergence within the social sciences generallyand disability studies in particular of postmodernist/structuralist perspectives. Since the


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coming to power of right-of-centre governments in America and in the UK in the 1980s and thecollapse of Soviet-style communism, there has been a gradual but significant de-radicalisation ofthe social sciences generally and a retreat from radical theories which pose a direct challenge to acapitalist neoliberal world view (Harvey 2010).

This finds expression in disability studies in the United States and Canada in the work ofDavis (1995), Mitchell and Snyder (1997), Thomson (1997, 2006) and Tremain (2002,2005), and in the UK and Europe the writings of Corker and Shakespeare (2002), Shake-speare and Watson (2002), Shakespeare (2006), Kristiansen et al. (2009) and Goodley (2011).

In sum, these approaches shift attention away from the primacy of economic forces in thecreation of disablement towards a politically benign focus on culture, language and discourse.While some studies acknowledge that cultural responses to impairment were transformedwith the onset of industrialisation and non-disabled ‘normalcy’ (Davis 1995), the focus is onthe role of discourse rather than the economy and associated ideologies. Constructions of thebody rather than the economic and social relations of capitalism are prioritised. Standards ofphysical health, mental balance and moral soundness are closely linked, so that defectivebodies and minds are associated with ‘degeneracy’ (Young 1990) and social anxieties(Thomson 1997, 2006). ‘People with disabilities’ are therefore recast as a disadvantagedminority in the tradition of American politics and writings (Hahn 2002).

The postmodernist rejection of a ‘modernist’ world view, ‘grand theorising’ and associatedconceptual dualisms generated a critique of the social model and the impairment/disabilitydistinction upon which it rests (Tremain 2002, 2005; Shakespeare and Watson 2002; Shake-speare 2006). These arguments are fuelled by disabled feminists’ early assertions that impair-ment-related experiences must be included in disability theorising (Morris 1991; Crow 1996),and that the removal of barriers will not solve the problems encountered by all disabled peoplebecause of the complexity and severity of particular conditions (French 1993; Thomas 1999).All of these writers have subsequently acknowledged the importance of a social model analysis.For example, Jenny Morris stated that:

The social model of disability gives us the words to describe our inequality. Itseparates out [disabling barriers] from impairment (not being able to walk or see orhaving difficulty learning). … Because the social model separates out disabling barriersand impairments, it enables us to focus on exactly what it is which denies us our humanand civil rights and what action needs to be taken.

(2002: 1–3)

Even so, the social model as advocated by UPIAS and as evidenced in the writings of Finkel-stein (1980) and Oliver (1990), among others, is criticised for generating a grandiose theory thatexcludes important dimensions of disabled people’s lived experience and knowledge. Criticsand former advocates, such as Shakespeare and Watson (1997) for example, argue that thesocial model is an outdated ideology as the impairment/disability division upon which it rests isdifficult to sustain and its emphasis on barrier removal is unrealistic.

However, to claim that the impairment/disability distinction is false is to suggest that thedivision between the biological and the social is false. While such assertions may be of interestto philosophers and some social theorists, they have little, if any, meaningful or practicalvalue in terms of research, policy and practice. Besides helping to fuel further criticism ofsocial model-inspired writings by medical sociologists (Bury 1996, 2000; Williams 2003),they serve only to re-enforce within policy circles the traditional bias for ‘changing theperson rather than changing the world’ (Bickenbach 2009: 110).


24

To reiterate: in the social model the impairment, disability dichotomy is a pragmatic oneand does not deny that some impairments limit people’s ability to function independently.Nor does it deny that disabled people have illnesses at various points in their lives and thatappropriate medical interventions are sometimes necessary. Most people experience illness atvarious stages of the life course (Priestley 2003). Impairment is a common occurrence oftendue to environmental and social causes (WHO 1999, 2002). How people deal with impair-ment – whatever its cause and severity – is determined in many ways by their access to arange of social and material resources. The fact that an increasing number of people withimpairments do not have access to these resources in both rich and poor nation-states alike islargely due to the globalisation of a particular materialist world view that prioritises thepursuit of profit over equality and social justice.

Whilst postmodernist accounts reaffirm the importance of the cultural in the process ofdisablement, they downplay the material reality of disabled people’s lives. They provide nomeaningful insight into how the problem of institutional disablism might be resolved ineither policy or politics. Indeed, if the postmodernist denial of the impairment/disabilitydistinction is accepted then disability activism and politics are rendered inconceivable and‘Impaired people might as well lie down to the discrimination and exclusion that disablestheir lives’ (Hughes 2005: 90).

As the problems with postmodernism have become overt some disability theorists haveturned to a critical realist perspective similar to that favoured by medical sociologists. Shake-speare, for instance, argues that this is ‘the most helpful way of understanding the socialworld, because it allows for complexity’ (2006: 55). This enables him to justify an allegianceto the ICF and to a ‘relational’ understanding of disability promoted by researchers in Nordiccountries (see also Watson 2010 and Goodley 2011).

However, such arguments fail to address Williams’s assertion that a critical realist approachstands in marked contrast to recent developments in disability theory, and postmodernistthinking in particular, as a basis upon which to fashion ‘health care “fit” for the 21st century’(1999: 815). It is notable too that in Nordic states welfare and educational policies continue torely on medical and psychological interpretations and labels. Research is essentially top-down,apolitical and often concerned with defining and measuring impairment with reference toimpairment-specific groups such as those with ‘learning disabilities’, for example, ratherthan to oppression or discrimination (Tøssebro and Kittelsaa 2004; Soder 2009). Consequently,discrimination and oppression remain largely unchecked (Gustavsson 2004; Kristiansen andTraustadottier 2005; Inclusion Europe 2008).

Moreover, the shift in emphasis away from a social model focus on structural forces hasimportant implications for disabled people, their families and indeed the general populationin both wealthy and poor countries alike. Since the coming of capitalism, inequality withinand across nation-states has escalated. This has been exacerbated in recent years by a succes-sion of deepening global economic crises. These have fuelled long-standing concerns overenvironmental decay due to unregulated industrial development and its implications for asustainable food supply in light of an unprecedented expanding global population (Harvey2010). Consequently, as we move further into the new millennium economic and politicalstability in all countries is likely to become increasingly fragile and the struggle for a fairer andinclusive global society more difficult (Barnes and Sheldon 2010). Social model insights haveprovided a theoretical and practical framework with which to explore and address theseconcerns. To ignore these achievements is to usher in the demise of disability studies and itsrelevance to disabled people, their families and the population as a whole and the struggle fora fairer and just society.


25

Final word

This chapter has focused on the various forces that have shaped what is generally referred toas the social model of disability. The combination of political activism and scholarship hashelped to generate a shift in perceptions of disability both nationally and internationally.Disability is now regarded in policy circles as not simply a medical issue but also a humanrights concern. A major catalyst for this development has been the social model emphasis onthe material and structural causes of disabled people’s disadvantages. This has led to theintroduction of numerous legislative measures and policy initiatives to address the variouseconomic and social deprivations encountered by disabled people around the world.

Yet these policies have had only a marginal impact on the everyday experience of dis-ablement, and the majority of disabled people remain the poorest in all societies. And giventhe unprecedented economic, environmental and demographic challenges that lie ahead, thissituation is likely to get worse before it gets better, if it does at all. Consequently, now morethan ever we need to build on the insights of the social model and uncover the reasons whythe policies to address disablism have been unsuccessful, and so contribute to the ongoingstruggle for change. To shy away from this task and to focus instead on abstract and obscuretheorising that has little or no relevance beyond the sterile confines of university lecturetheatres and seminar rooms will almost certainly usher in the demise of disability studies as acredible and meaningful academic discipline (Sheldon 2006).

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Union of the Physically Impaired Against Segregation (UPIAS) (1976) Fundamental Principles of Disability,London: Union of the Physically Impaired Against Segregation. Available at www.leeds.ac.uk/disability-studies/archiveuk/index.html.

Wates, M. (1997) Disabled Parents: Dispelling the Myths, Cambridge: National Childbirth Trust Publishingin association with Radcliffe Medical Press.

Watson, N. (2010) ‘Can a Critical Realist Approach Help in Our Understanding of Disability?’, paperpresented at the Lancaster Disability Studies Conference, Lancaster University, 8 September.

Weeks, J. (ed.) (1991) Against Nature: Essays, On History, Sexuality and Identity, London: Rivers Oram.Wolfensberger, W. (1989) ‘Human Service Policies: The Rhetoric Versus the Reality’, in L. Barton (ed.)

Disability and Dependence, Lewes: Falmer, pp. 23–42.World Health Organization (WHO) (1976) International Classification of Disease, 9th rev. edn, Geneva:

World Health Organization.World Health Organization (WHO) (1980) International Classification of Impairments, Disabilities and Handicaps,

Geneva: World Health Organization.World Health Organization (WHO) (1999) International Classification of Functioning and Health, Beta-2 draft,

short version, Geneva: World Health Organization.World HealthOrganization (WHO) (2001)Rethinking Care from the Perspective of Persons with Disabilities, Geneva:

World Health Organization. Available at www.leeds.ac.uk/disability-studies/archiveuk/index.html.World Health Organization (WHO) (2002) Towards a Common Language for Functioning, Disability and

Health (ICF), Geneva: World Health Organization. Available at http://www3.who.int/icf/icftemplate.cfm?myurl=beginnershtml&mytitle=Beginner%27s20Guide (accessed 25 July 2011).

World Health Organization (WHO) (2005) ICF Introduction, Geneva: World Health Organization.Williams, G. (2001) ‘Theorising Disability’, in G. L. Albrecht, K. D. Seelman and M. Bury (eds) Handbook

of Disability Studies, London: SAGE, pp. 123–144.Williams, S. (1999) ‘Is Anybody There? Critical Realism, Chronic Illness and the Disability Debate’,

Sociology of Health and Illness 21(6): 797–819.Williams, S. (2003) Medicine and the Body, London: SAGE.Yeo, R. A. (2006) Disability, Poverty and the ‘New’ Development Agenda: In or Out of the Mainstream? Lessons

from Research on Disability and Development Cooperation, 6th edn, Leeds: Disability Press. Available atwww.dfid.gov.uk/R4D//PDF/Outputs/Disability/RedPov_agenda. pdf (accessed 25 July 2011).

Young, I. M. (1990) Justice and the Politics of Difference, Princeton, NJ: Princeton University Press.Zarb, G. and Nadash, P. (1994) Cashing In on Independence: Comparing the Costs and Benefits of Cash and

Services, Derby: British Council of Organisations of Disabled People. Available at www.leeds.ac.uk/disability-studies/archiveuk/index.html.

Zarb, G. and Oliver, M. (1993) Aging with a Disability: What Do They Expect after All These Years?Greenwich:University of Greenwich. Available at www.leeds.ac.uk/disability-studies/archiveuk/index.html.


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CRITICAL DISABILITY STUDIES

Rethinking the conventions for the age ofpostmodernity

Margrit Shildrick

As one of the newer disciplines in academia, disability studies has seen a remarkable expansionand development in little more than two decades that has moved it decisively away from therehabilitation studies that previously marked its effective limits to the status of an interdisciplinarysubject that is as much at home with theory as with pragmatic solutions. It has become one of thefields in which new ideas have evolved most rapidly, suggesting the kind of changes in ways ofthinking that can have significant material effects on the everyday reality of people with dis-abilities. In recent years, the powerful emergence of what has come to be called critical disabilitystudies (CDS) has added new force to the theoretical impetus already at the heart of the socialmodel, taking it in innovative directions that challenge not only existing doxa about the nature ofdisability, but questions of embodiment, identity and agency as they affect all living beings. As Iunderstand it, CDS is of crucial importance to scholarship as a whole. Just as feminism, post-coloniality and queer theory have all successfully pushed out the theoretical boat, CDS is nowthe academic field to watch. What is exciting about each of those areas is that they have forced usto rethink everything. It is no longer a case of just ‘adding on’ women or ethnic minorities to apre-existing syllabus; the task is to ask how that changes our understanding of society in general.In the same way, a course on the philosophy or sociology of the body, for example, cannotsimply consign disability issues to week nine of an academic term, because any thoroughgoingconsideration of the anomalous body introduces yet another arena of difference which onceinvestigated has the capacity to change how we think about all sorts of other things. In short, ourunderstanding of all bodies is affected once we take the difference of disability into account. CDSemphatically cannot be sidelined, then, as primarily the concern of those with disabilities. Insofaras each of us, however we are embodied, is complicit in the construction and maintenance ofnormative assumptions, CDS challenges every one of us to rethink the relations between disabledand non-disabled designations – not just ethically as has long been the demand, but ontologically,right at the heart of the whole question of self and other.

My own involvement, working in and writing on disability studies on and off for aboutthe last 15 years, has largely deployed what I term a postconventional analytic, which mayseem somewhat unfamiliar to those who understand disability in terms of issues like rights, orwho use the social model of disability as a starting point. The move towards postmodernismin CDS is often met with external scepticism, but just recently it has felt as though this is

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now the area in which some of the most exciting new theoretical work is being done. Thepoint is to deliberately shake up some of our assumptions about disability and its historicalantecedents by employing critique, not just as a way of challenging external forces, but as amethod that contests the apparent verities of disability studies itself. It is Judith Butler, I think,who best captures the exciting opportunities that are mobilised by the use of critique indisability studies:

What [critique is] really about is opening up the possibility of questioning what ourassumptions are and somehow encouraging us to live in the anxiety of that ques-tioning without closing it down too quickly. Of course, it’s not for the sake ofanxiety that one should do it … but because anxiety accompanies something likethe witnessing of new possibilities.

(Quoted in Salih and Butler 2004: 331)

Butler, of course, has a reputation of being too difficult – too postmodernist, too abstract – tobe of much use in the substantive field of disability, but what I want to suggest is that herapproach, and that of other postconventional thinkers like her, offers a new productive wayof thinking that has significant material application. We ignore the developments of post-conventional theory and the changing environment of postmodernity at our peril – notbecause older models of understanding (notably the social model of disability) are wrong andshould be replaced, but because we need to maximise the ways in which we can confidentlydevelop our own agenda for CDS. In moving away from practice-based rehabilitation stu-dies, disability studies – together with disability activism – has already made huge advances.But the issue I want to consider is whether sociopolitical gains and an increased under-standing of the history and material conditions of disability are sufficient to the extent that itcould be said that there is nothing more to be done. My claim is not that the postmodernistenquiry of CDS could ever provide final answers, but that, as Butler indicates, the work ofcritique is to keep alive the very process in which questioning itself generates new potential.

The initial question that must concern all those engaged with disability issues is why in theera of postmodernity, when multiple geopolitical insecurities are writ large and our individualexpectations of the future are at best ambivalent, the societies of the global north should beso unsettled by non-normative forms of embodiment. As I put it elsewhere, ‘[f]or suchanxieties to persist in the face of apparently more weighty global concerns speaks not to anover-investment in the local and individual, a kind of displaced anxiety even … but to theextraordinary significance of human corporeality’ (Shildrick 2009: 1). What is striking in suchsocieties is that the continuing discursive and material exclusion of disability coexists withconcerted – and often effective – programmes of change that move towards the formal inte-gration of disabled people into the standard rights, obligations and expectations of normativecitizenship. To be perceived as differently embodied, however, is still to occupy a placedefined as exceptional, rather than to simply be part of a multiplicity of possibilities. Despitethe endlessly differential forms of human embodiment, the dominant discourse continues tomark some people – but not others – as inherently excessive to normative boundaries.Rather than simply continuing to base interventions on exploring how this happens, weshould try to understand why – what it is that underlies and motivates the move to excludeothers – and that will entail utilising and, where necessary, pushing to new limits all sorts oftheoretical resources that take apart discourse as well as practice.

My contention is that disabled people1 continue to be the targets of widespread dis-crimination, oppression and alienation, not so much for their differences (both visible and

Critical disability studies

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hidden), but because their performativity of embodied selfhood lays bare the psychosocialimaginary that sustains modernist understandings of what it is to be properly human.2 Perhapsthe very notion of ‘properly human’ alone should give pause for thought, for that designationis precisely one that is increasingly contested in the era of postmodernity. Nonetheless, giventhe challenged but enduring influence of the modernist logos, we should note that thevalued attributes of personhood are autonomy, agency – which includes both a grasp ofrationality and control over one’s own body – and a clear distinction between self and other.Clearly, then, any compromise of mental or physical organisation or stability, any indicationof interdependency and material connectivity, grounds – for the normative majority – adeep-seated anxiety. The consequence, as we see in substantive effects every day in the livesof those who are anomalously embodied, is that difference is made other, rejected anddevalued by those who are able to broadly align themselves with the illusory standards of thepsychosocial imaginary. As such it is easier to see that the conventional demands for anextension and solidification of rights for disabled people, and for a more inclusive culture, fallshort of a more radical move that would shake up not just law, policy and socioculturalrelations, but would contest the very nature of the standards that underpin their normativeoperation. In order to move forward, it is necessary to investigate more deeply what it is thatcontinues to impede the evolution of equitable conditions of possibility.

Such a mode of thinking marks what is often termed critical disability studies, a relativelyrecent development that is broadly aligned with a postconventional theoretical approach.3 Itspurpose is both to extend into new territory the existing achievements of more modernistparadigms of disability like the social model, and where necessary to productively critique thelimitations of such models. While CDS should never lose sight of its own history, it mustconsciously engage with all the theoretical resources available to it, whether drawn fromfeminism, postmodernism, queer theory, critical race theory or long-established perspectiveslike the phenomenology of the body and psychoanalysis. Such committed interdisciplinarityin a postconventional vein is still relatively unexplored in published work, particularly in theUnited Kingdom, where the social model has long held sway. However, there are signs thatit is beginning to open up. The way forward was partly evident in Corker and Shakespeare’sedited collection Disability/Postmodernism (2002), which consciously set out to introduce newways of thinking about the disabled body. Although not fully transdisciplinary, the bookoffered a whole-hearted endorsement of the value of, at least, a soft postmodernist lens inunderstanding the status, meaning and practices of disability. In the preceding years, manyindividual scholars had been developing their own contestation of the modernist paradigmsthat underlay disability studies, but the new collection represented a radical shift that greatlyincreased the range of critique while enthusiastically engaging with new theoretical modelsmore suited, perhaps, to the fast-changing landscape of the twenty-first century. Morerecently, Dan Goodley’s book Disability Studies (2011), which provides an introductoryoverview of the whole field that takes on board a much broader critique than usual, hasmade the case for non-specialists, while my own work – and especially Dangerous Discourses

(Shildrick 2009) – attempts to stir up the interlinked issues of sexuality and subjectivity in theterms of such discourses as Lacanian psychoanalysis and Deleuzian assemblages. In turning towhat I class as postconventional approaches, the elements to stress are a new focus on thesignificance of embodiment; an awareness of the workings of the cultural imaginary; adeconstruction of binary thought in favour of the fluidity of all categories; and a recognitionthat emotion and affect are as important as the material aspects of life.

Before looking into those aspects more closely, it is instructive to ask what comprises thecategory of disability, which marks out one major contemporary location of what I have


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referred to as anomalous embodiment (Shildrick 2002). Although some form of definitiveanswer is often called for, and is given, it is one that those working within a postconventionalframework are particularly reluctant to provide. The setting out of any fixed parameters ordefinitional boundaries has long been resisted by disability scholarship as unnecessarilyreductive – and perhaps only the medical model has attempted such a categorisation – but forrecent theorists, the demand appears to speak to a desire to close down and thus normalisewhat otherwise remains a shifting nexus of both physical and mental states that resists finaldomestication.4 What qualifies as a disability in any case varies greatly according to thesociohistorical and geopolitical context, and even in a single location the designation remainsstubbornly multifaceted and resistant to definition in terms of both its boundaries andmeanings. As is clear from Rosemarie Garland Thomson’s summary of just some of theconsiderations, conventional binary thinking – either this or that – cannot capture the richinterweaving of bodily states that constitute a more nuanced approach to the question ofdifference:

Disability is an overarching and in some ways artificial category that encompasses con-genital and acquired physical differences, mental illnesses and retardation, chronic andacute illnesses, fatal and progressive diseases, temporary and permanent injuries, and awide range of bodily characteristics considered disfiguring, such as scars, birthmarks,unusual proportions, or obesity. … The physical impairments that render someone‘disabled’ are almost never absolute or static; they are dynamic, contingent conditionsaffected by many external factors and usually fluctuating over time.

(1997: 13)

For all its complexity, Garland Thomson’s list outlines solely physical as opposed to cognitivedevelopmental disabilities. Moreover, what further and necessarily complicates the picture arethe many other intersectional concerns – such as those of ethnicity, age, class, sexuality,gender and more – that impact on the experience and significance of any disabled state.

The self-evident reality of such complex variations, nonetheless, has not prevented thekind of reductive universalising approach that speaks of disability as a single classification,although to a certain extent – where the simplification is internal to disability politics ratherthan imposed from the outside – there might be some strategic justification. In order to makethe strong point that those with disabilities are ‘othered’, reference must clearly be made tothe binary structures that support all modern societies in the global north. For that reason,‘the contestation of ableist attitudes, values and politics will often set aside intricate differentialconsiderations in the face of strategic necessity’ (Shildrick 2009: 3). The apparent strength tomount a sociopolitical challenge to existing normativities often resides in the extent to whichan identity politics is adopted, signalling a self-defined and unified group identity and thecapacity to voice a common cause, even at the expense of marginalising actual internal dif-ferences. A period of identity politics is heavily associated with most movements that standup against the mainstream, and real changes are often procured; the drawback is that minorityinterests within – unconventional forms of sexual expression for example – are once againsilenced. As Donna Haraway reminded feminists facing similar problems, the ‘dream of acommon language … of perfectly faithful naming of experience, is a totalizing and imperialistone’ (1991: 173). What she recommended in place of identity politics was the pursuit oftemporary and partial affinities, ad hoc alliances that would give leverage to sociopoliticalclaims without solidifying and policing the reductive coils of sameness and difference. Thevery diversity of disabilities demands a similarly sensitive temporal approach that recognises


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broad overlapping interests but refuses the putative safety of naming oneself as a member of afixed and bounded category. Speaking of disability in theoretical terms, then, must bothrespond to, and critique, the power and simplicity of binary thinking. To postmodernistthinkers, the dominance of the binary may be based on an illusion, but its operation is all tooreal. What matters is that we recognise that the essential challenge to the damaging effects ofoppositional binaries is not the limit of what is either possible or necessary. Indeed, Harawayherself, although not writing about disability as such, indicates an alternative way forwardbased precisely on the extravagance of corporeal possibility. She writes:

How can our ‘natural’ bodies be reimagined – and relived – in ways that transformthe relations of same and different, self and other, inner and outer, recognition andmisrecognition into guiding maps for inappropriate/d others? And inescapably, theserefigurings must acknowledge the permanent condition of our fragility, mortality,and finitude.

(Ibid.: 3–4)

The issues at stake here are twofold and are ultimately related. The first is that while most ofus who are concerned with disability studies may already have an enriched understanding ofthe multiple subdivisions of human morphology, the further point is that the parametersaround all and any types of embodiment – and not just disabling conditions – are in any caseuncertain. In the postconventional approach, all putative categories are slippery, unfixed,permeable, deeply intersectional, intrinsically hybrid and resistant to definition. Second, whilerecognising that what exactly constitutes the ‘otherness’ of those assigned to the category ofdisability is hard to identify, we should remember that the binary distinction between dis-abled and non-disabled is itself vulnerable to deconstruction. Lennard Davis (2002), forexample, catches one highly significant aspect of the issue when he points to the instability ofdisability as ‘a subset’ of the wider instability of all identities in the era of postmodernity,while Henri-Jacques Stiker points out that the disabled ‘are the tear in our being that revealsits open-endedness, its incompleteness, its precariousness’ (1999: 10). In short, although theboundary that separates those who count as able-bodied from those who are marked as dis-abled is deeply influential and taken for granted in modernist thought, neither of those termsis as self-evident as it appears. Indeed, I would argue that the separation and distinctionbetween diverse forms of embodiment is at best an expediency, and at worst a violentimposition of epistemic and/or material power. The challenge of such a view is that itundermines the seductive lure of identity politics that has seemed to offer the most socio-political impact, not least to disability activism. By complicating the liberal humanist claimthat, like other identifiable oppressed groups, disabled people should simply be afforded thesame rights and benefits enjoyed by mainstream members of their society, critical theoristsacknowledge the notion of multiple irreducible differences, as well as the indistinction ofboundaries in a way that problematises the whole notion of categorical clarity. In otherwords, the status of both disabled and able-bodied designations is at best provisional ratherthan marking a fixed identity.

At a superficial level, it is a truism that any individual may experience unexpected accidentaltrauma, the loss of capacity through illness, or simply the processes of ageing that can result inany one of us crossing the boundary between one category and another and acquiring the labelof disability. The use of the term ‘temporarily able-bodied’ to express this insight has becomeubiquitous in disability discourse. Nonetheless, I find such an explanation of the limits of thecentral binary of disabled and non-disabled deeply inadequate, and scarcely likely to shake the


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epistemic certainty with which that binary is habitually deployed. It is more important touncover the imbrication within difference that destabilises the normative notion that there is aclear distinction between forms of embodiment. The issue, for me, is not only that the main-stream model of temporarily able-bodied can only envisage an individual falling away from whatremains a dominant, normative standard, but that it shows no recognition of either the materialor psychic intercorporeality that underlies our relations with others. If we ask why disabilityshould be so unsettling, so productive of anxiety, it is surely because it speaks not to someabsolute difference between the experience of disabled and non-disabled forms of embodiment,but rather to a deeply disconcerting insinuation of commonality. Stiker puts it at its most pro-vocative and personal when he comments that ‘Each of us has a disabled other who cannot beacknowledged’ (1999: 8). Or as Thomas Couser notes, ‘Part of what makes disability sothreatening to the non-disabled then may be precisely the indistinctness and permeability of itsboundaries’ (1997: 178). As poststructuralism has made clear, the modernist confidence in theseparation of self and other cannot hold.

The point arising from such an analysis is that, while there may be a strategic necessity todo so, it cannot suffice to put in place formal structures of equality in order to ameliorate thediscrimination and oppression that disabled people face worldwide. This is not to deny thatmany pragmatic aspects of living with a disability can and do benefit from an approachfocused on changes in law and social policy, but rather to draw attention to the limits of theequality model in terms of both the embodiment of difference and the anxiety that disabilityis so clearly capable of generating.5 In consequence, I have reservations about the efficacy ofthe social constructionist model of disability (SMD), and believe that an investigation intoboth the phenomenological experience of the disabled body and into the psychosocialdimensions of what mobilises normative exclusions would yield a deeper understanding ofthe issues at stake. To summarise briefly, what the SMD importantly insists on is that themajor ‘problem’ of disability is located not in the marginalised individual but within thenormative structures of mainstream society. In relatively recent years, the North Americanand the UK disability movements have decisively rejected the biomedical discourse of dis-ability as an individual pathology of physical or cognitive development and have embraced anunderstanding that the condition is socially constructed. The determined promotion of the SMDhas resulted in considerable material gains for disabled people insofar as many countries havepassed dedicated legislation that undercuts discrimination and undoubtedly leads to a moreinclusive organisation of social life. While grounding a revalorisation of people with disabilities,however, the changes do not necessarily contest the underlying attitudes, values and subconsciousprejudices and fears that are the basis of a persistent, albeit often unspoken, intolerance. In otherwords, in the psychosocial imaginary, morphological imperfection is still disavowed. Theresponse, then, must go beyond simply extending the formal framework in which disabled peoplecan maximise their status as good citizens of the neoliberal polity, but must seek ways of firstcritiquing and then transforming the nature of those entrenched in it and scarcely acknowledgedobstacles to fundamental change. Insofar as each of us – whatever our individual form of embo-diment – is complicit in the maintenance of the psychosocial imaginary, what is required is botha recognition of just why disability appears so threatening to the normative majority, and a re-imagining of the potentialities of bodily difference. Whether we choose to focus on who is tocount as a subject or on something like the experience of sexuality, the ethical task is to mobiliseboth discursive analysis and substantive intervention, each of which can demonstrate the capacityof disabled embodiment to perform a radical queering of normative paradigms.

What, then, are the implications of such a perspective? The identification of any disruptionto the perceived stability of normative expectations both mounts a direct challenge to the


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attitudes and values of mainstream society and constitutes a critique of the model of disabilitypolitics that primarily sets out to reform what is identified as an oppressive external socialstructure. What CDS intends is to unsettle entrenched ways of thinking on both sides of theputative divide between disabled and non-disabled, and to offer an analysis of how and whycertain definitions are constructed and maintained. Given that none of us stand outside thediscursive conventions of our specific time and place, this is no simple task; whatever ourrelation to disability, we are all deeply influenced at both the conscious and subconscious levelby a characteristically modernist conception of the world. It is as though all knowledge andexperience were grounded in binary opposites that would unproblematically figure a socio-politics of inclusion or exclusion, and that identification with one category rather than theother is an inevitable step that requires no further analysis. To be aligned with normative formsof embodiment automatically and naturally entitles one to a range of external goods, benefitsand advantages, while to be named as disabled signals a marginalisation that can only becountered by the strength of unified resistance and a claim to access that which is denied. Thestruggle for equal opportunities in jobs, education, transport, and so on, may be stubbornlyresisted, but it is one in which the participants on either side of the have/have not divide‘know their place’ in the binary hierarchy and can speak and act from it as though theproblematic were wholly resolvable at the structural level. The losses and gains from any con-frontation may entail some reformulation of categorical assumptions, but the fundamentalbinary of disabled/non-disabled is undisturbed. As Wendy Brown points out, ‘rights are neverdeployed “freely”, but always within a discursive, hence normative context’ (2002: 422).

When it comes to experiential and affective issues like subjectivity and sexuality, moreover, itis even less possible to see the problematic in such clear-cut terms. Both areas are highly pro-ductive of anxiety precisely because they disorder normative assumptions and generate demands,not so much for structural reform as for a transformation in the meaning of selfhood, not only forthose who are anomalously embodied but, by extension, for every one of us. As soon as theother moves beyond simple binary opposition and refuses to stay in place, the implications ofchange affect the whole relation. By and large, in seeing the negative status of disability asexternally based in the discriminatory social procedures, the SMD has been unconcerned withsubjectivity, and slow to put sexuality on the agenda. A social constructionist understanding ofdisability simply assumes that there is some core pre-given subject waiting to be empowered.The argument is where disabled people have been treated in the past as passive objects of con-cern, rather than as autonomous subjects, the sociopolitical approach will be effective indemanding the recognition of independent agency. But just as feminism has painfully learned toquestion its own founding assumptions about equality, disability studies also needs to ask whetherdemands for recognition within the existing system – as though the problem were no more thanone of material exclusion – is an adequate response. For poststructuralists, in any case, the subjectis no longer seen as a stable, grounding category that can be taken for granted, but as a discursiveconstruction, which indicates that all sorts of epistemic, ontological and ethical claims must berethought (Shildrick 1997). In similar ways, the notion of sexuality has been problematised bycritical cultural and queer theory to the extent that CDS acknowledges the need to complicatethe sociopolitical assertion that disabled people have the same rights as others to sexual identityand expression. Given that unmanaged sexuality already has the propensity to threaten theefficient organisation of social relations – a threat greatly amplified in the context of the anxiety-provoking disabled body – then we need to uncover which psychosocial factors are in play andwhat is the nature of the boundaries that are vulnerable to transgression.

My argument is that all of us – regardless of our own individual morphology – are partici-pants in the sociocultural imaginary that pervasively shapes the disposition of everyday attitudes


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and values – and we all therefore have a responsibility to interrogate it. The implication is thatthe view that only disabled people themselves have a right to speak authoritatively with regardto disability must be rethought. The attraction of standpoint theory is that it openly privilegesthe lived experience and knowledge of those at the centre of a specific problematic, and gives avoice to those who may previously have been unheard, be they women, black people orpeople with disabilities. What standpoint theory promotes is a hierarchy of truth telling inwhich the oppressed uncover a suppressed reality while those who are dominant – effectivelyhistoric oppressors of all kinds – speak only a limited discourse that reflects their own ideolo-gical interests. This interpretation is partly supported by Foucault’s assertion that power doesindeed construct a very biased and incomplete form of knowledge but, as he also makes plain(1980), the partiality of discourse does not imply the existence of some absolute truth thatcould, under the right conditions, be accessed. In contemporary feminist thinking, theimplausibilities of standpoint theory have largely led to its demise as a mode of analysis, only forit to reappear in disability theory and practice. Clearly the promotion of voices that have beenhistorically subjugated – what Foucault calls ‘the great anonymous murmur of discourses’(1989: 27) – is a good thing, but not to the extent of claiming a categorical authority that putsin question the validity of any account proposed by those who are defined as non-disabled.Indeed, I would argue strongly that they are the ones – and I include myself here – who havethe weightiest responsibility in the matter, not to speak on behalf of, or to pre-empt theexperience of, others unlike themselves, but to interrogate precisely their own cultural andpsychosocial location as non-disabled (Marks 1999; Shildrick 2009).

To recap, what I understand by CDS is an approach marked by a true transdisciplinarityand an openness to a plethora of resources that are not commonly seen as being relevant tothe concerns of mainstream disability studies. Although to simply conflate our specific para-meters of inquiry with other categories of difference, like those of race or gender, would bedamagingly reductive, there is, I believe, a sufficient overlap in the respective discursiveconstructions to justify some corresponding strategic responses. If the aim is critique, then itcalls for the utilisation – and sometimes deliberate deformation – of multiple elements offeminist, queer, poststructuralist and postmodernist theory in order to disrupt the conven-tional meanings of the terms associated with disability, including those of subjectivity andsexuality. Underlying each of those inherently resistant discourses is a retheorisation of thequestion of difference that entails a radical shift from the modernist privileging of an auton-omous and stable self to the postmodernist contention that the self is always embodied,dependent on its others, unsettled, and always in process. To mobilise such a critique signifiesnot the search for some successor theory, but a way of holding open theoretical conjunctionsthat are potentially contradictory in meaning and original intent. The goal is not to constructa universal theory, but to position disability as figuring an irreducible provocation to thenormative desire, evident in the psychosocial imaginary, for stability and certainty about whatit means to be human. The far from modest question that underlies the enterprise of CDS is:what it would mean, ontologically and ethically, to reimagine dis/ability as the very conditionof human becoming? The task at the level of embodiment is to explore how and why thedisabled body – the body that falls outside modernist conventions – already disorders the powerof prevailing sociocultural normativities. In place of modernist stereotypes that construct aninsidious devaluation of bodily difference, and of disabled people, postconventional theoriesof embodiment expose the uncertain and vulnerable nature of all forms of embodiedselfhood. Where once the post-Enlightenment sovereign subject, who relies on the exclu-sionary strategies of separation and distinction, seemed secure, the emergence of first Mer-leau-Ponty’s phenomenology and later the theory of performativity have been prominent


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in showing how the privileging of some forms of embodiment to the detriment of othersmight be productively disturbed.

My purpose is not to suggest that such disruption is a unique feature of postmodernity,although the particular theoretical framework of postmodernism embraces such disturbance ascentral to ontological and epistemological knowledge. As both Foucault (2003) and Stiker(1999) have shown, a genealogy of the disabled body will always disrupt the notion ofa progressive and sequential development of ideas, and uncover instead a series of contra-dictory, splintered and non-teleological discourses firmly embedded in particular socio-historical locations. Where mainstream disability studies has relied on a narrative ofprogressive transformations of meaning – from early Judaic Biblical models of impurity to adominant biomedical approach that pathologises the disabled body, and more recently to theSMD analysis that has politicised the problematic – CDS works with a far more messy, dis-organised and insecure set of indicators. As Stiker shows, we can identify a thoroughgoinggovernmentality at the heart of policy initiatives – as with rehabilitation programmes or theuse of prosthetics – that indicate that they are never as positively progressive as they claim ormay seem to be. Like the critical legal theory of Wendy Brown which shows how rights-based claims to equality arising from a liberal recognition of the exclusionary nature of themodernist model of sovereign selfhood are double-edged, holding out material gains only atthe cost of assimilation to normative standards, Stiker is fully cognisant of the danger ofnormalisation strategies that cover over difference. As he notes, ‘Paradoxically, [disabledpeople] are designated in order to be made to disappear, they are spoken in order to besilenced’ (1999: 134). His warning has direct relevance to the recent claims to ‘sexual citi-zenship’, which have been strongly promoted within disability politics (Shakespeare et al.1996; Siebers 2008; Rogers 2009). The issue of who counts as a sexual subject is highlycogent insofar as the sexuality of disabled people is both highly regulated and invalidated orsilenced completely (Shildrick 2009), but it remains to ask whether sexual citizenship is aneffective objective. As I understand it, the move neither radically contests nor transforms thecurrent neoliberal understanding of sexuality, but simply attempts to buy into the normativeorder and thus fails to break with the devaluation of difference.6

We must not forget that beyond the insistent operations of governmentality that markcontemporary society, there is also a level of interior, even subconscious meaning given todisability. Where a Foucauldian analysis speaks to the ubiquitous forms of the self/otherbinary, a more specifically deconstructive approach reveals the other to be an interiorelement of the embodied self. Consequently, a more nuanced understanding of the materi-alisation of normative constructions of disability supplements the Foucauldian approach byengaging with the psychosocial elements that constitute the Western imaginary. With specificregard to the pleasure and danger of sexuality and erotic desire, for example, a psychoanalyticapproach would ask what part the links between desire, lack and anxiety play in frustrating apositive model of disability and sexuality. Although many disability theorists have been jus-tifiably wary of psychoanalysis and its use as a tool of oppression, others are increasinglyturning to it in recognition that the perspective may offer an important and resistant mode ofunderstanding (Wilton 2003; Shildrick 2009; Goodley 2011). At its heart is the convictionthat our apparent psychic and bodily integrity is never given, but is an ongoing process,constantly open to disruptions from within in terms of both stable body image and self-identity, and is always risking the irruption of anxiety, especially with regard to sexuality.Building in particular on Lacan’s rereading of Freud, which traces the gradual emergence inthe Symbolic of a putatively coherent (sexual) subject, we need to ask what has beenrepressed in order to achieve the illusion of unity and order, and which forms of embodied


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subjectivity cannot come into being because their antecedents in the Real are already toodisruptive? The psychoanalytic approach offers some powerful insights into the socioculturaldenial of desire and sexual identity to people with disabilities, and more generally it providesa convincing account of the normative anxiety that surrounds the whole subject of disabledembodiment. As a tool for further understanding normative responses, psychoanalysis isextremely valuable and signals where resistance might lie, but what it cannot fully do isprovide a positive model of disability in all its aspects. In that respect, queer theory, andparticularly its extension into Deleuzian theory, is considerably more productive.

Contemporary disability scholars such as Tremain (2000), Sherry (2004) and McRuer(2006) increasingly deploy queer theory with the aim of opening up the question of howanomalous embodiment in all its forms can be seen as inherently transgressive. In place of aFoucauldian model of governmentality, or an alternative psychoanalytic model based on thenotion of lack – each of which adds to our understanding of the challenge disability makes tonormativity – a queer reading of the performativity of desire, especially in a Deleuzian sense,offers an affirmative account of disability. For Deleuze and Guattari (1984, 1987), theconcept of desire is greatly extended to encompass its meaning, not just as a component ofspecifically sexual being, but as an element of self-becoming that permeates all aspects of what itmeans to live in the world. Desire enables a productive positivity that leaves behind thenormal/abnormal binary to mobilise instead the ungovernable energies and intensities thatemanate from a series of unrestrained and often unpredictable conjunctions. Where othermodels are engaged with the contested boundaries of self and other, the Deleuzian toolboxfacilitates a move beyond conventional distinctions and separations between whole and‘broken’ bodies, or between the organic and non-organic. The conditions of possibility aretransformed, and one immediate outcome is that neither the disabled body in general nor theprostheticised body are excluded from discourses of pleasure and desire. Rather, the disabledbody could be seen as paradigmatic, not of the autonomous subject at the heart of modernistdiscourse, but of the profound interconnectivity of all embodied social relations. In Deleuzianterms, we are all interdependent, and come together and break apart in unpredictable ener-gies and flows of desire (Grosz 1995; Gibson 2006). To rely on a wheelchair for mobility,a prosthetic limb for balance, or a human assistant for daily tasks, is to be engaged in assem-blages that always exceed the individual and his or her capacities. In the era of post-modernity, where the liberal humanist subject is displaced by the posthuman, corporealvariation is an unlikely justification for devaluation or exclusion. The overriding point,however, is that indeterminacy and instability are not unique to the anomalous body butstand as the conditions of all corporeality in as much as the finality and integrity of the nor-mative subject are merely features of a phantasmatic structure. As such, the ‘disabled’ bodysignals not some exceptional lack or failure, but simply one mode among multiple ways ofbecoming. Once corporeal integrity loses its privilege in the era of postmodernity, and is seenas no more than a provisional mode of embodiment, then modernist anxieties aboutnon-normative morphology become signs of a pointless nostalgia.

In conclusion, I want to set out some ambitious claims for critical disability theory thathighlight its efficacy and even its inevitability. Where feminism, postcolonial studies andqueer theory have in the recent past all helped us to think and therefore to act differently, Ibelieve that CDS can now take up that task. Given the widespread oppression of disabledpeople perpetuated in many societies globally, it is clear that disability poses probing ques-tions about the nature of those societies, not only with regard to their overt organisation butalso in terms of their psychosocial imaginaries. The responsibility for enquiry and analysis fallson all those who participate in the relevant structures, and just as racism has been identified as


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a problem of whiteness, so too must (dis)ableism be addressed both by those who are identifiedwith normative standards, and by those who are excessive to them. By taking on a range ofcontemporary critical theories and asking what difference they can make to the othering ofdisabled people, no single perspective is privileged above others. At the same time, whole newareas, like that of sexuality, which had been previously sidelined as politically inessential, havebeen opened up to scrutiny, and deconstructive inquiry has been directed inward as well asengaging with external realities. As I indicated at the beginning of the chapter, the key to thenew scholarship is critique, not in the sense of the destruction of old certainties, but as a boldand risky enterprise that subjects all the conventions to potentially disruptive analyses. This is noempty scholarly game, but a necessary move that recognises that in cases at the limit certainbodies – monstrous bodies and disabled bodies – clearly demonstrate the inadequacy of con-ventional models of embodied selfhood as self-sufficient and in control. To take the path ofCDS and to rethink the operative conditions under the gaze of postconventional critique isbound to generate controversy, but ultimately it is a move of high ethical responsibility.

We are left, then, with an important ethical question: how can we engage with morpho-logical difference that is not reducible to the binary of either sameness or difference?7 Whatshould be the response to those who cannot be assigned to either the category of those otherswho are absolutely not like us, or to the category of those who can be reclaimed or nor-malised, or made more like us. As long as the anomalous body remains the absolute other, itis so distanced by its difference, its not-me-ness, that it poses no threat. However, once itbegins to resemble those who lay claim to the primary term of identity, or to reflect backaspects of ourselves that we do not usually acknowledge, then its indeterminate status – asneither wholly self nor absolutely other – becomes deeply disturbing. If we are to have anethically responsible encounter with corporeal difference, we need, then, a strategy ofqueering the norms of embodiment, a commitment to deconstruct the apparent stability ofdistinct and bounded categories. We need to remind ourselves that the embodied self isalways vulnerable, and that the normative parameters of the embodied subject as definedwithin modernist discourse are based on an illusion. Perhaps if there was greater recognitionthat there is no single acceptable mode of embodiment, and that all bodies are unstable andvulnerable, then rather than being labelled as deficient, the bodies that are further fromnormative standards could be revalued as simply being different. The way forward is far fromclear, but my hope and expectation is that, in its commitment to deepening conceptualframeworks, CDS has begun to engage with just the kind of critical thinking that throwsnew ontological, epistemological and ethical questions into relief.

Notes

1 Disability terminology is highly contested, not least regarding the naming of those who putativelyoccupy the category. The current preference within both CDS, and some but no means all activistcircles, is for ‘disabled people’ rather than ‘people with disabilities’, although even then practice mayvary between the UK and the United States. The term ‘people with disabilities’ was initially promotedto signal a break with older and more evidently stigmatising terms such as handicapped, retarded,crippled, and so on. Other supposedly more positive designations such as differently abled, physicallychallenged or special needs have fallen out of favour, and the use of so-called people-first language formsis now seen as failing to encompass the significance of disability (Overboe 1999; Titchkosky 2006),treating it as more as a contingent add-on than a fundamental element in the production of identities.Nonetheless, ‘people with disabilities’ remains in widespread use among disabled and non-disabledpeople alike, and some academic journals make it mandatory. On either side such policing seemsunnecessarily divisive, and in any case chases after the illusion of perfect terminology that will not intime become marked by ongoing prejudices and anxieties. Accordingly, although I prefer ‘disabled


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person’ as more adequate to denoting the process of embodiment, I use its alternative wherever it seemscontextually more appropriate.

2 The imaginary is the fictive (non)location where multiple projections and identifications work to shapedominant corporeal, categorical and sociocultural formations. It is the locus in which the so-callednormal and abnormal are held apart.

3 See Meekosha and Shuttleworth (2009) for their assessment of the significance of the term ‘critical’. It isnot entirely clear when the discipline of critical disability studies first appeared as such, but certainly YorkUniversity, Canada, established an MA – and subsequently a PhD – programme in it in 2003.

4 At the time of writing, the UK coalition government was attempting to reverse the gains of recent yearsand reimpose simple binary – and broadly medicalised – definitions of disability that would better allowits management within a welfare system. In the neoliberal state, the desire to domesticate – and thuseliminate the troublesome excessiveness of morphological anomaly – is reinvigorated in the service ofsocio-economic governance.

5 See Shildrick (1997) for a fuller analysis of the shortcomings of claiming equality in relation to anyoppressed grouping.

6 This critique is more fully developed in Shildrick (forthcoming).7 Given the hierarchies of difference that operate within disability, where those with physical conditions

may feel superior to those with developmental and intellectual disabilities – not to mention the myriadsubtle nuances within each form – the question concerns all of us, and not just the normative majority.

References

Brown, Wendy (2002) ‘Suffering the Paradoxes of Rights’, in Wendy Brown and Janet Halley (eds) LeftLegalism/Left Critique, Durham, NC: Duke University Press, pp. 420–435.

Corker, Marian and Shakespeare, Tom (eds) (2002) Disability/Postmodernism: Embodying Disability Theory,London: Continuum.

Couser, Thomas (1997) Recovering Bodies: Illness, Disability and Life Writing, Wisconsin: University of WisconsinPress.

Davis, Lennard (2002) Bending over Backwards: Disability, Dismodernism and Other Difficult Positions, NewYork: New York University Press.

Deleuze, Gilles (1987) A Thousand Plateaus: Capitalism and Schizophrenia, trans. B. Massumi, Minneapolis:Minnesota University Press.

Deleuze, Gilles and Guattari, Félix (1984) Anti-Oedipus: Capitalism and Schizophrenia, trans. R. Hurley,Minneapolis: Minnesota University Press.

Foucault, Michel (1980) Power/Knowledge: Selected Interviews and Other Writings 1972–1977, ed. C. Gordon,Brighton: Harvester Press.

Foucault, Michel (1989) Foucault Live (Interviews 1966–84), ed. Sylvere Lotringer, trans. John Johnston,New York: Semiotexte.

Foucault, Michel (2003) Abnormal, trans. G. Burchell, New York: Picador.Garland Thomson, Rosemarie (1997) Extraordinary Bodies, New York: Columbia University Press.Gibson, Barbara E. (2006) ‘Disability, Connectivity and Transgressing the Autonomous Body’, Journal of

Medical Humanities 27(3): 187–196.Goodley, Dan (2011) Disability Studies: An Interdisciplinary Introduction, London: SAGE.Grosz, Elizabeth (1995) Space, Time, and Perversion: Essays on the Politics of Bodies, London: Routledge.Haraway, Donna (1991) ‘A Cyborg Manifesto’, in Simians, Cyborgs and Women: The Reinvention of Nature,

London: Free Association Books, pp. 149–183.McRuer, Robert (2006)Crip Theory: Cultural Signs of Queerness and Disability, New York: NewYorkUniversity

Press.Marks, Deborah (1999) Disability: Controversial Debates and Psychosocial Perspectives, London: Routledge.Meekosha, Helen and Shuttleworth, Russell (2009) ‘What’s so “Critical” about Critical Disability Studies?’,

Australian Journal of Human Rights 15(1): 47–75.Overboe, James (1999) ‘“Difference in Itself ”: Validating Disabled People’s Lived Experience’, Body and

Society 5(4): 17–29.Rogers, Chrissie (2009) ‘(S)excerpts from a Life Told: Sex, Gender and Learning Disability’, Sexualities 12(3):

270–288.Salih, Sara and Butler, Judith (eds) (2004) The Judith Butler Reader, Oxford: Blackwell.


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Shakespeare, Tom, Gillespie-Sells, Kath and Davies, Dominic (1996) The Sexual Politics of Disability: Untold

Desires, London: Cassell.Sherry, Mark (2004) ‘Overlaps and Contradictions between Queer Theory and Disability Studies’, Disability &

Society 19(7): 769–783.Shildrick, Margrit (1997) Leaky Bodies and Boundaries: Feminism, Postmodernism and (Bio)ethics, London:

Routledge.Shildrick, Margrit (2002) Embodying the Monster: Encounters with the Vulnerable Self, London: SAGE.Shildrick, Margrit (2009) Dangerous Discourses of Disability, Subjectivity and Sexuality, London: Palgrave

Macmillan.Shildrick, M. (2013) ‘Sexual Citizenship, Governance and Disability: From Foucault to Deleuze’, in

Beyond Citizenship?London: Palgrave Macmillan, pp. 138–159.Siebers, Tobin (2008) Disability Theory, Ann Arbor: University of Michigan Press.Stiker, Henri-Jacques (1999) A History of Disability, trans. William Sayers, Ann Arbor: University of

Michigan Press.Titchkosky, Tanya (2006) ‘Policy, Disability, Reciprocity?’, in M. A. McColl and L. Jongbloed (eds) Disability

and Social Policy in Canada, Concord, ON: Captus Press, pp. 54–71.Tremain, Shelley (2000) ‘Queering Disabled Sexuality Studies’, Sexuality and Disability 18(4): 291–299.Wilton, Robert (2003) ‘Locating Physical Disability in Freudian and Lacanian Psychoanalysis: Problems

and Prospects’, Social and Cultural Geography 4(3): 369–389.


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4

MINORITY MODEL

From liberal to neoliberal futures of disability

David Mitchell and Sharon L. Snyder

Introduction: from liberal to neoliberal futures of disability

Following the setting of the coordinates of the theory that forms the basis for the disabilityminority model developed primarily in the United States in the 1970s and 1980s, our task hereis to identify the key characteristics of a foundational methodology for this field. The aimshould be to give life to a primary positioning of disability in the UK social model as located inthe environment rather than in the person, and it should also conceive of a disability identitythat may no longer be accommodative for a practical politics in the age of neoliberalism. Thisargument charts an analysis of the shifting coordinates of historical attitudes towards disabledbodies from the late nineteenth century to the present day. These approaches to disability havesteered, and have been steered by, strategies that inform the late-twentieth-century disabilitycivil rights movement (or what will be referred to here as the advent of the minority model ofdisability).

Specifically, the analysis draws upon French disability historian Henri-Jacques Stiker’sarguments in The History of Disability that the twentieth century was dominated by approa-ches to the normalisation of disability within the rehabilitation sciences and so provided asingular model of inclusion (1997: 121–189). To fix or to straighten, as Stiker points out, isto attempt a form of integration that relies upon the repair/rehabilitation of the disabledbodies, while also not making disability integral to the category of the Human. Stiker, in turn,followed Michel Foucault’s analyses of the rise of disciplinary institutions in the nineteenthcentury that took up the study of ‘natural Man’ – i.e. the organic materiality of the body – astheir primary target in the creation of docile citizens (ibid.: 155). Finally, the chapter takes upglobal queer theorist Jasbir Puar’s arguments about the arrival of ‘homonationalism’ – hername for mapping the politicised normalisation efforts by gay rights movement activists in theeffort to gain access to dominant social institutions (2007: 2). In turn, we develop a parallelconcept of ablenationalism that theorises the ways in which some aspects of disability haveentered into the discourse of American exceptionalism as a normative claim of a new repre-sentational mode that we refer to as the ‘able disabled’.

Our thesis in joining these theorists is that we have moved some distance (in a culturalsense) from a eugenics-driven formula of disability as an unassimilable hereditary pathologyrequiring radical sequestration to a more neoliberal contemporary concept of disability as a

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paradigm for all bodies as lacking capacities that are in need of market-based solutions –particularly those peddled within a new era of biopolitics by an increasingly globalisedpharmaceutical industry. Our goal is to try to show how disability minority rights modelshave strategically moved between (1) advancing ideas of difference informed by disability as amaterial social condition requiring creativity of living and, therefore, a source of uniquesubjectivity in its own right; and (2) those more visible social reformist approaches based onadvocacy of assimilation through social accommodation – i.e. the entry of a normalised dis-abled body into the social sphere of active citizenship promoted by democratic social orders.This final turn of approaches to disability as an integrable difference is largely in line with thedevelopment of other civil rights-based movements that some believe (including ourselves)has been losing steam during the early decades of the twenty-first century.

The micro-technologies of normalisation

The montage of disability rights voices that opens our 1995 disability documentary film, VitalSigns: Crip Culture Talks Back, captures disabled political scientist Harlan Hahn emphaticallyexplaining a core precept of the disability minority model: ‘We want all aspects of theenvironment changed. We want the architectural environment changed; we want the socialenvironment changed; we want the attitudinal environment changed. All we want to do ischange the world!’ The interview was shot at the first North American conference on dis-ability and the arts held at the University of Michigan entitled This/Ability and includedpresentations by disabled academics, artists and activists who were all working in their ownseparate scholarly geographies at the time. The meeting surprised all of its participants withthe discovery of a tradition of like-minded individuals pursuing various aspects of disability asa socially contextual, rather than medicalised, phenomenon. It brought together survivors ofthe micro-technologies of normalisation in rehabilitation, charity, education, psychology,social work and the social service industries. These are all disciplines that separate, measure,data collect, diagnose, train, correct, advocate and, generally, normalise people with dis-abilities in order to improve and, ultimately, assimilate them.

In this context we employ ‘normalisation’ as a practice intended to mitigate the stigmaassigned to disability through the techniques of disguise, supplementation, masking and, mostimportantly, the devising of strategies of passing. As one disabled performer in the film Vital

Signs, Brad Rothbart, put it: ‘in school to pass as non-disabled was the ultimate ne plus ultra’.Students with disabilities expend enormous amounts of energy hiding their disabilities inthe effort to be included alongside their able-bodied peers (hence Stiker’s definition of inte-gration as to fix or to straighten). This expenditure requires so much attention that academicengagement takes a back seat and people with disabilities sacrifice their education to thegreater social task of concealing their differences. The National Longitudinal TransitionStudy conducted by the Institute of Education Sciences on behalf of the US Department ofEducation researched outcomes for disabled students in mainstream public high schools inthe late 1990s. The study underscored a critical finding: students who openly embrace theirdisability status as a defining aspect of their identity perform at a higher rate than those whospend time concealing their particular form of diverse embodiment. In contrast to the find-ings of this study, we also must grapple with the fact that a commitment to normalisationrequires an open willingness on the part of institutions to accept the power to manage peoplewho share little in common with respect to their embodiment other than their experienceof stigma and forms of exclusion that accompany a society which has fully normalised nor-malisation itself (Stiker 1997: 168).

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Yet we would also qualify what we have described thus far in terms of a relatively hostileenvironment in which disabled people find themselves only by explaining that subjection tooperations of normalisation are hardly the worst kind of social fate one can endure. Even so,people with disabilities in most social orders of normalisation serve as canaries in the coal mineof government-funded initiatives in that their situation as the objects of proliferating serviceprovision opportunities expose their vulnerability within economically fragile social assistancesystems. Thus, government cutbacks take away liberties with one hand while ultimately with-drawing supports with the other. For instance, in Crip Times Robert McRuer shows howausterity-based social support cuts operate in tandem with spectacles of disability inclusion suchas the extravagance of the Paralympic Games held in London, UK, in 2012 (2018: 50).

Another example of a similar period of destabilisation occurred in the United States duringlate 2010 when a series of protests were staged by disabled persons and other individualsthreatened by social service reductions in California in the form of a street art performancesatirically entitled ‘Arnieville’ (so-named for the serving Governor Arnold Schwarzenegger).‘Arnieville’ was established in August and again in October 2010 as a tent city to demonstratethat the exchange of liberties for services as the requirement of receiving public assistancemakes one vulnerable not only to a loss of liberty but, ultimately, the loss of service provision.Consequently, people with disabilities are often left regrettably in a negative relation to the lossof liberty as a result of entering into government-funded service systems which promised toprovide assistance.

Nevertheless, a gathering of disabled artists, scholars and activists at the This/Ability con-ference discussed above resulted in shared recognition that none of us were working incomplete seclusion from other like-minded individuals. There is an ironic quotation thatFoucault uses at the conclusion of Discipline and Punish to indicate the moment in 1840 whenthe carceral prison system completed its work and effectively became a place of belonging inexclusion. This was expressed in the last words by a dying child who had been imprisoned inthe penitentiary at Mettray: ‘What a pity I left the colony so soon’ (Foucault 1995: 293).What is surprising about this sentiment for Foucault is its condensation of a moment when aform of incarceration that integrated ‘all the coercive technologies of behaviour’ – those ofthe cloister, prison, school and regiment – became integrated into a punitive system thatseemed increasingly to take shape for inmates as a way of life (ibid.).

These last words represent a similarly ironic claim often expressed by participants in dis-ability culture. Despite all of one’s efforts to leave the institution behind and gain wideraccess to mainstream society, many people with disabilities rediscover a community amongother disabled people in their adulthood whose association they thought they were seekingto escape. The need to leave behind the kind of carceral life encountered in institutions andother cultural locations of disability featuring forms of segregation is not just the pursuit of aright to liberty, rather it is also an effort to diminish one’s own degree of stigma by distancingoneself from other stigmatised people as a common strategy of passing. Not only individua-lised stigma, but association with other stigmatised people becomes an all-engulfing mediumthat, as the sociological theorist of stigma Erving Goffman put it, threatens to nullify all othercharacteristics of one’s humanity (1986: 41).

The point of the 1995 film, then, was to explore a nascent notion of disability culture – i.e.crip culture – that sought not just inclusion, but rather a revision of exclusionary social net-works based on disability as a foundational aspect of human diversity as opposed to liberalformulations of mitigation against deviancy. In taking up this utopian project, politicised disablepeople adopted a radical, upstart position with respect to their social devaluation. The radicalpremise was that their bodies expressed their part in the variegation of the human and the

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instrumentalisation of narrow social norms precluded the realisation of their integral relation toembodiment.

In defining the nature of their oppression, proponents of disability culture assailed – notmedicine per se – but the insatiable appetite that medicine generates in nearly all other socialinstitutions. One needs to turn again to Foucault at this point in order to further this way ofthinking about the oversight of professions of deviancy – that which we have called ‘thecontrolling professions’ in another context (2006: 175) – extant in the late 1970s when hewas writing Discipline and Punish:

The judges of normality are present everywhere. We are in the society of the teacher-judge, the doctor-judge, the educator-judge, the ‘social-worker’ judge; it is on themthat the universal reign of the normative is based; and each individual, wherever hemay find himself, subjects to it his body, his gestures, his behaviors, his altitudes, hisachievements.

(1977: 304)

The key aspect of Foucault’s formulation in this quote is that subjection to normalisationresults from mutual collaboration of the proliferation of professional domains of expertisebased on body management as well as individual willingness to comply with such levels ofsubjection. If the ‘judges of normality are present everywhere’ then medical diagnosis ofpathologised conditions as aberrant have been unleashed within neoliberal professionaldisciplines in such a way that disability is now everyone’s fiefdom of oversight.

To explain the relative ease with which we subject ourselves to such practices, Foucaultargues that marginalised members of taxonomic social order do so willingly as a result of thesocial saturation of such practices into every nook and cranny of civil life (that which hedefined as the essence of a neoliberal biopolitics). The naturalisation of normalisation, so tospeak, has occurred to such an extent that people with disabilities participate following a periodof internalisation where they become their own disciplinary agents. Disability marks one assubject to the extension of domains of oversight seeking to produce docility as their primarysocial operation. Furthermore, the coercion involved in operating among these institutionsachieves its primary goal: participation is voluntary and mandated expectations of complianceby disciplinary institutions are increasingly concealed. This movement of disability managementtechniques underground, so to speak, forms the basis of how we witness the shifting tacticalmodes of addressing disability under neoliberalism that have thrown off liberal restraints butwhich operate under increasingly lethal yet less visible oversight regimes. In making this point,we do not argue for a historical jump in tactics (i.e. one form of restraint replacing another),but rather that both forms of disciplinary power networks now operate at the same time.

Incapacity: the new social standard

It is in this recognition of the workings of an alternative diffuse disciplinary network ofpower relations that disabled people assist us in realising that all our bodies supply the rawmaterial upon which contemporary disciplinary systems work their productive power. Toemphasise this point we might think of the way commercial media is dominated by sellingproducts to contemporary audiences through the heightening of awareness of proliferatingzones of bodily imperfection, e.g. incontinence, erectile dysfunction, uterine discomfort,back pain, menstruation relief, depression, reflux, and bodily aches and pains. Such ailmentsand embodied insufficiencies multiply across every surface, crevice and cavity of that which

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we imagine as our personal interior and exterior space. Increasingly, we come to knowourselves as embodied beings only through understanding our bodies within a binary systemof the normal and the pathological, or that which Foucault’s dissertation adviser, GeorgeCanguilhem, called ‘the experience of bodily breakdown’ (1991: 209). Contemporary bodiesfind themselves increasingly colonised by what Nikolas Rose calls ‘Big Pharma’ through aprocess that segments body parts into insufficiencies in need of interventions (2006).

Late capitalism (i.e. neoliberalism) produces bodies as languishing through excessive demandsof labour productivity, exacerbated social anxieties and toxic environments in order to exploitnew markets. As Puar has shown, whereas a prior era celebrated autonomous bodies that wererich in capacity, our own era turns the corner and proliferates pathologies as opportunities fornew product dissemination opportunities (i.e. forms of addiction now promoted as solutions)(2017: 46). Incapacitated bodies are now the standard to an increasing degree and corporationsrecognise them as rich veins of data for ailments that are both bodily and social in their making.Such interventions can only be addressed through the active consumption of over-the-countermedications and other forms of bodily pain-alleviating products. This shift to contemporarybodies as incapacitated rather than autonomous and independent marks a massive change in theoperations of a normalising contemporary marketplace. The body is targeted as inherently lack-ing and the pharmaceutical industry promises not to remove but to mask social symptoms asindividualised failing. Nowhere in this marketing scheme are the inhospitable environments,workplaces or living arrangements directly addressed as the appropriate objects of critique.

Disability finds itself inserted into the fine-tuning of diagnostic classifications seeking toextend their power across all bodies. In fact, this situation can be interpreted as little morethan the unveiling of a false specificity of abnormality – one that was used to underwrite theequally fictitious existence of normative embodiment. Our argument here is that beginningwith a foundational concept of disability as prevalent, transhistorical, cross-cultural and notbound to observe the foundational borders of social identity such as race, class, gender orsexuality, produces an arbitrary experience of body difference as stigmatising. Such anexperience is largely an effect of neoliberalism’s consumer-based market niches that shift fromfetishisations of full capacity to those of incapacity (Mitchell and Snyder 2015: 30).

This ebb and flow of ideas of embodiment reveals the outlines of an artificially tailoredinfrastructure that excludes and then requires retro-fitting to contemporary market-drivenformulas. Two hundred years of institutionalisation and/or isolation within one’s homeactively produces social unfamiliarity with embodied difference. The result is that this lack ofshared space with disabled persons has ill prepared social contexts for integrative life andresults in a variety of inflexibilities that tend to be argued as overly expensive to rectify.Educational segregation, over-zealous medicalisation and testing regimes, ineligibility forgovernment housing, consignment to long-term care rehabilitation programmes that resistreturning their charges to the social world, private business barriers, historic building pre-servation laws, economic disincentives to employment, and consumer markets that resistrecognising people with disabilities as part of their consumer base, all result in correspondinglevels of inaccessibility (architectural, social and attitudinal as disabled political scientist HarlanHahn says in the quotation from Vital Signs with which we opened this chapter) that becomenaturalised and acceptable as a necessary product of disabled persons’ social exclusion.

Ablenationalism: model minority normativities

Whereas most twentieth-century rights-based movements have argued on behalf of access tosocial privileges on the basis of human similarities distorted by ideological investments in false

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biological models of inferiority, disability cultures cannot effectively distance themselves fromthe quandary of material bodily variation. For instance, in her book, Terrorist Assemblages,global studies queer theorist Jasbir Puar argues that gender, sexuality and racial liberationmovements have all pursued a rights-based rhetoric that opts to normalise differences amongpopulations. In doing so, rights-based arguments have strategically promoted normativelyoriented assimilationist models. Such strategies rehabilitate a portion of a minority demographicin the likeness of a dominant majority while creating relations of ‘homonormativity’. For Puar,homonormativity includes those once marginalised members of deviant communities who aremost capable of replicating the norms of dominant communities and who have thus been ableto use this as a strategy of integration.

Homonormativity can be read as a formation complicit with and invited into thebiopolitical valorization of life in its inhabitation and reproduction of heteronomativenorms … channeled through the optics of gender and class are the attendant attributesand valuations of longevity, illness, health, environment, fertility, and so on. Throughthe pining for national love, the temporality of minority model discourses is one offuturity, as endlessly deferred or deflected gratification, mirroring biopower’s constantmarch forward, away from death, where the securitization for today funnels backthrough the guarantees of the quality of life for tomorrow.

(2007: 9, 27)

Puar’s critique of the minority model approach here centres on the ways in which civilrights-based models further solidify the normative practices of majority lifestyles. In particular,Puar’s insights expose the degree to which concepts of health are linked to prevailing het-eronormative choices. For instance, gay marriage as a fetishisation of heteronormative socialinstitutions of privilege that are largely available to white, middle-class gay men, or, in aneven more pressing racial assimilationist model, those Sikh American communities thatsought to publicly distance themselves from other Muslim cultural identities by culturallyrehabilitating themselves as hard-working, patriotic and heterosexual Americans rather thanterrorists. From this perspective, model minority approaches further entrench minoritymodels in the very institutions and value systems that marginalise them in the first place.

At times, disabled people have tried to mimic this strategy – particularly in North America,Australia and Europe – by arguing that their access to normative privileges and lifestyles isdependent upon opening up public spaces (what Hardt and Negri call ‘the commons’) to awider variety of body types. So, for instance, dropped kerbs made wheelchair accessibilityfeasible, audible signals at pedestrian crossings and Braille signage accommodated those withvisual impairments, and lighting-based signalling systems in the home or rental housing pro-vided those with hearing impairments with the means to more adequately respond to cues ina hearing world. Yet the emphasis in each if these instances did not necessarily result in ameaningful integration of differences. Rather, accommodation provided those bodies withlevels of already integrable disability into normative frameworks that did not significantlyupset or disrupt environments already suited to a narrow range of abilities.

In following Puar, we have called this tactic ablenationalism: the degree to which treatingpeople with disabilities as exceptions valorises able-bodied norms of inclusion as the natur-alised qualification of citizenship (Mitchell and Snyder 2015: 12). One might be led to thinkthat within rubrics of undervaluation, disabled populations find themselves marginalised onthe outskirts of cultural power. Yet recent ablenationalisms – those open rhetorical claimsthat are characteristic of the neoliberal era of inclusion for people with disabilities issued by

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the states and corporations – have situated some mutant bodies as effectively and normativelydisabled. Disabled people now perform their representational work as a symbol of expansiveneo-liberal inclusion efforts: a largely rhetorical space that operates by what ethnic historianSusan Koshy defines as ‘a simulacrum of inclusiveness even as it advances a political culture ofmarket individualism that has legitimized the gutting of social services’ and supports whileretaining commitment to the integration of some of its most vulnerable citizens (2001: 3).

We may think of efforts in late January 2010 by the United States, the UK and Canada tosend cast-off prosthetic items such as artificial legs and arms, wheelchairs, crutches andwalkers to earthquake-decimated Haiti on behalf of the ‘scores of newly disabled’. In thewake of an earthquake that resulted in massive social and structural upheaval, mainstreammedia reporters, such as CNN’s Sanjay Gupta, explained to audiences that the ‘loss of a leg’was tantamount to a ‘death sentence’ in the post-earthquake aftermath. Such observationswere obligatorily accompanied by offhand editorials about the insufficiency of Haiti’s healthcare system before the earthquake, as if a negligent health care infrastructure was ultimatelyto blame for the number of individuals experiencing the devastation of crush woundsresulting in numerous amputations. Consequently, the donations made by disabled peopleand their families (presumably who were more than adequately taken care of in their owncountries) would turn their excess social supports (i.e. unused prosthetic equipment) into theaccoutrements of Haiti’s regained mobility and the future ascendancy of a more modern,Western-style, health care system. This display of disability largesse is an example of the kindof American exceptionalism whereby provisions are retroactively suggested to exist in excessfor disabled people living in Western industrialised nations. The inadequacies of distributionof assistive technology and equipment are erased in Anglophone countries through a sort ofMalthusian denial of the rampant rejection rates characteristic of for-profit insurance indus-tries on behalf of people with disabilities. The left-over equipment from this mortality-dealingdenial rate must also be added to the glut of manufactured unusable materials created withoutadequate input from disabled persons.

Yet disability is often portrayed as a lavish prosthetic enhancement campaign. Gracing aposter for the Emotion Pictures Disability Film Festival held in 2006 in Athens, Greece, was aphotograph of the double amputee, Amy Mullins, speeding across a beach on artificial legspowered by resplendent prosthetic coils. This kind of cultural inclusion that is presumablyindicative of a new era of disabled athleticism – buffed, muscular, yet technologically supple-mented bodies – promises all of the transcendent capacity that a hyper-technologised culturecan offer. Within this approach, some disabled bodies find a degree of acceptance and ornatesupport while further marginalising bodies that are not so easily integrated.

That year the Mullins image was paralleled by other forms of ‘positive and affirming’ kindsof disability popularly narrated in the cultural lineage of dystopian films such as X-Men.Members of the X-Men cohort have significant – even severe – incapacities but also harbourextra-human compensatory abilities. ‘Hypercapacitation’ – or, rather, schemes of superpowerovercompensation – rule the roost of neoliberal explanatory systems. Such systems enshrinebodies that are different yet enabled enough to ask nothing of their crumbling, obstruction-ridden infrastructure, continually naturalised as environments made for most but (unfortu-nately) not all bodies. Enhanced supercrips are celebrated by capitalist commodity culturesand social democratic governments alike as symbols of the success of systems that furthermarginalise their ‘less able’ disabled kin in the shadow of committed researchers conjoined to‘creaming’ practices for the non-impaired impaired.

As in race sociologist Paul Gilroy’s identification of the black, buffed, hyper-athletic bodiesof African American athletes now commodified and traded across the Atlantic in advertisements

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for unaffordable sneakers, the newly rehabilitated, fetishised disabled body comes replete withracialised, classed, gendered and sexualised characteristics of its own – features that seem tomake the new inclusivism a radically individualist and ever-accomplishable horizon for disabledsubjects (2002: 348). Following Puar’s formula of ‘upright homosexuals engaged in sanctionedkinship roles’, we need to undertake a fierce study of this new transnational bolstering of cripnormativities – the able disabled – in order to seek out, maintain and even challenge the trans-gressive alterities of former multicultural identities (Mitchell and Synder 2015: 20).

Neoliberal discourses of power involve the production of ‘inclusive’ lifestyles that provideopportunities for narratives of national exceptionalism based on the highly feted arrival of anew era of humane treatment towards people with disabilities. Such developments provide asideways glance at the normalised disabled subject and an accompanying normalisation of‘treatable’ deviancies. Furthermore, this normalisation of some disabilities is created againstother non-normative, ‘less easy to accommodate’ differences (neuro-diverse people, peoplewith learning difficulties, intersexed people, and those with communication-based dis-abilities). This process of the normalisation of disability, referred to by Lennard Davis as‘dismodernism’ – the idea that postmodernism entails a recognition that we are all disabled tosome extent – undermines our ability to pay attention to abject populations peripheral to theproject of living (2006: 239). There is not a level playing field that all bodies occupy, andcalling for all to recognise levels of insufficiency will do little to accomplish meaningful sys-tems change. Such an argument is based on a false precept that identification with difficultiesof embodiment at almost any level cultivates sympathies that cross the ability lines of dis-ability disidentification.

Furthermore, as recent research on crip and debilitated lives by McRuer and Puardemonstrate, another goal that crip/queer or debility studies scholarship pursues is a way toarticulate questions posed by devalued populations experiencing forms of active abandon-ment by the state. In particular, the critique focuses on those whose health and well-beingare consciously left to languish in proximity to human-made hazards, including toxicity;maiming by police or militias; exposure to environmental lethality; austerity cuts to socialsupports; bedroom taxes; gentrification; and the incarcerating practices of ongoing settlercolonialisms. McRuer focuses on the ouster of impoverished people from Mexico City’sdecreed zones of abandonment (such as Colonia Roma), and Puar analyses Palestinians inGaza now living in the ‘world’s largest open-air prison’ (2007: 51, 2017: 128). One con-tinuing goal of this work is to challenge liberal categories of discrete minority identities thatsplinter abilities to analyse wider swaths of ‘social suffering’ (ibid.: 69). Ironically, as our ownwork in The Biopolitics of Disability argues with respect to disability inclusionism, such identitypartitions are based on fetishisations of the exclusionary normative citizenship rights theycritique (Mitchell and Snyder 2015: 4). This is the global underbelly of a disability phe-nomenon equivalent to what Mbembe calls ‘necropolitics’ with regard to the expendabilityof populations where race, class, sexuality, gender and disability intersect (2003: 5).

Conclusion: something other than becoming in order to be fixed

Let us conclude by returning to the impossible idealism of Harlan Hahn’s statement in Vital

Signs as the expressed purpose of the disability rights movement: ‘All we want to do is changethe world’. While one could read this declaration as meaning a relatively reductionist conceptof accommodation – on the order of ‘all is we want is access to what able-bodied folkshave’ – we choose to read it as an affirmation of a world with disabled people in it thatcannot yet be anticipated. Currently, we continue to participate in a binary relationship of

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ability and disability – we continue to allow ourselves (including disability studies scholarshiphere as well) to know non-normativity through its specific deviation from normalcy (theunmarked and unremarkable term in the ability/disability dyad).

Instead, we should imagine a future in which people will wonder how our culturalmoment spent so much time in the specification of aberrancy. How foreign those prior his-torical bodies of deviance look in contrast to vulnerable bodies definitively understood in thisfuture time as those materialities that ‘disobeyed ‘appropriate’ bodily practices and the sanctityof the able body’ (Puar 2007: 221). Perhaps there will be a time when people wonder howwe could have spent so much time classifying modes of aberration as if this practice broughtus into a greater familiarity with the particularities of bodies deemed disabled? How, one maywonder, could a period lasting 200 years and so fixated on not wasting time prove so fixatedon answering the question ‘what is disability?’ We would suggest that there could be a timewhen disability comes to occupy the status of a misnomer – no more and no less than thevariable body operating in dynamic flux, i.e. something more akin to a Deleuzian modalityof propulsions, drives and multiplicities that come to comprise a more robust concept ofdifference (Deleuze and Guatarri 1987:10).

Rather than affixing individuals with their disability label, disability would be allowed itsstatus as movement, in Brian Massumi’s terms, rather than an identity that locks individualsinto a human synonym of their own eclipsing impairment:

Position no longer comes first, with movement a problematic second, it is secondary tomovement and derived from it. It is retro movement, movement residue. The problemis not to explain the wonder that there can be stasis given the primacy of process.

(2002: 8)

Within this formula we would dissolve the seemingly commonsensical bifurcation of abilityand disability.

In their place, following Foucault’s peroration at the conclusion of The History of Sexuality

regarding the call to address ‘bodies and pleasures’, we might insert something along the linesof bodies and mutations as a way of imagining materiality’s constitutive multiplicities andpotential resistances (1990: 160). Disability does not (only) upset the social landscape becausewe, too, may experience the vagaries of embodiment; rather, we worry about disability’sability to elude capture by the compliances we demand of bodies, i.e. the injunction toexpose their variability to the impossible conformity of standardised functionalities, capacitiesand appearances. Instead, we would allow disability to reference a state of being without acoherent collective of affective, aesthetic and functional experiences – a denial of the extra-ordinary social effort to make disability an essence only of becoming in order to be fixed.

References

Canguilhem, Georges (1991) The Normal and the Pathological, New York: Zone Books.Davis, Lennard (2006) ‘The End of Identity Politics and the Beginning of Dismodernism: On Disability as an

Unstable Category’, in L. Davis (ed.) The Disability Studies Reader, New York: Routledge, pp. 231–242.Deleuze, Gilles and Felix Guattari (1987) A Thousand Plateaus: Capitalism and Schizophrenia, trans. B. Massumi,

Minneapolis: University of Minnesota Press.Foucault, Michel (1990) The History of Sexuality: An Introduction, vol. 1, New York: Vintage Books.Foucault, Michel (1995) Discipline and Punish: The Birth of the Prison, New York: Vintage Books.Gilroy, Paul (2002) Against Race: Imagining Political Culture beyond the Color Line, Cambridge: Belknap Press

of Harvard University Press.

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Goffman, Erving (1986) Stigma: Notes on the Management of Spoiled Identity, New York: Touchstone.Hardt, Michael and Antonio Negri (2005) Multitude: War and Democracy in the Age of Democracy, New

York: Penguin.Koshy, Susan (2001) ‘Morphing Race into Ethnicity: Asian Americans and Critical Transformations of

Whiteness’, boundary 2 28(1) (February): 153–194.McRuer, Robert (2018) Crip Times: Disability, Globalization, and Resistance, New York: New York University

Press.Massumi, Brian (2002) Parables for the Virtual: Movement, Affect, Sensation, Durham, NC: Duke University

Press.Mbembe, Achilles (2003) ‘Necropolitics’, Public Culture 15(1): 11–40.Mitchell, David T. and Sharon L. Snyder (2015) The Biopolitics of Disability: Neoliberalism, Ablenationalism,

and Peripheral Embodiment, Ann Arbor: University of Michigan Press.Puar, Jasbir (2007) Terrorist Assemblages: Homonationalism in Queer Times, Durham, NC: Duke University

Press.Puar, Jasbir (2017) The Right to Maim: Debility, Capacity, Disability, Durham, NC: Duke University Press.Snyder, Sharon and David Mitchell (2006) ‘Afterword – Regulated Bodies: Disability Studies in the Control-

ling Professions’, in D. Turner (ed.) Social Histories of Deformity, New York: Routledge, pp. 175–189.Snyder, Sharon and David Mitchell (2010) ‘Ablenationalism and the Geo-Politics of Disability’, Journal of

Literary and Cultural Disability Studies 4(2): 113–125.Rose, Nikolas (2006) The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century,

Princeton, NJ: Princeton University Press.Stiker, Henri-Jacques (1997) The History of Disability, Ann Arbor: University of Michigan Press.Vital Signs: Crip Culture Talks Back (1995) dir. Sharon Snyder, Brace Yourselves Productions, digital video, 48

mins.Wagner, M., Newman, L., Cameto, R. and Levine, P. (2005) Changes Over Time in the Early Postschool Out-

comes of Youth with Disabilities, report of findings from the National Longitudinal Transition Study (NLTS)and the National Longitudinal Transition Study-2 (NLTS2), Menlo Park, CA: SRI International.

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5

THE ICF AND ITS RELATIONSHIPTO DISABILITY STUDIES

Jerome E. Bickenbach

Introduction

The International Classification of Functioning, Disability and Health (ICF) (WHO 2001)occupies an intriguing place in disability studies. Although the ICF is the standard epide-miological tool for functioning across health practice and research – from medicine and therehabilitation therapies, to public health, health systems and health policy – it is eitherignored or heavily criticised by disability studies scholars who dismissively associate it with the‘medical model’ of disability. There are certainly many reasons to be sceptical about the ICFand its applications, but ignoring it and its increasing influence – foremost in the healthsector, but increasingly in the labour and education sectors as well – is not a sensible strategy.Once misunderstandings are removed, and flaws honestly and plainly identified, the ICFshould be acknowledged as an intellectual achievement and a scientifically valid tool, but alsoand most importantly as a potential instrument of empowerment.

In this chapter, I present the ICF from a stance within disability studies, scrutinisingthe ICF’s theoretical foundations, philosophical and conceptual assumptions, and potentialvalue for disability studies scholarship, while skimming over many of the technical detailsof the ICF as an epidemiological, clinical and health systems tool and international stan-dard. The technical details are fully accessible in the scientific literature (see, for example,Stucki et al. 2017a, 2017b, 2017c); the ICF’s conceptual foundations are somewhat lessaccessible.

Disability definitions, models and classifications

Barbara Altman enriched disability studies with her helpful distinction between definitions ofdisabilities, models (conceptualisations or conceptual frameworks) and classification schemesof disability (2000). She argued that answering the question ‘what is disability?’, althoughintuitively a matter of providing a definition, is actually a complex scholarly and politicalenterprise that goes well beyond semantics into deeper philosophical and political issues aboutthe conceptualisation of disability and related notions. Before turning to the ICF and its sig-nificance to disability studies, it is worthwhile to briefly review the complex debate about thedefinition and conceptualisation of disability.

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Disability scholars could hardly be unaware of the debate about ‘models of disability’ as thisdiscussion has been so entrenched as to be almost emblematic of the discourse. Scholars ofwomen’s studies debate the conceptualisations of gender, to be sure, but not so much theexistence of biological differences of sex. Disability studies is different because the conceptualdebate has included the issue of whether it is legitimate even to posit a biological, medical orhealth dimension or aspect of disability. Whether early adherents of the British version of the‘social model’ actually rejected the relevance of the biological phenomena of impairments inthe conceptualisation of disability is open to debate (see Shakespeare 2013). But the factremains that disability studies has both multidisciplinary academic and political activist roots,and the interaction between the two has been most evident in the debate about models (Ireview the early history of this debate in Bickenbach 1993).

The issue of definition has an important difference. Ultimately, a definition is a tool thatmust be ‘fit for purpose’, and there is no reason to think that there could, or should be a single,all-purpose definition of a complex notion like disability. A lawyer will have specific require-ments for definitions, and these will be quite different depending on the legal domain; a legaldefinition for an anti-discrimination law should be very inclusive and not at all tied to strictbiological or medical criteria – which partly accounts for the politically counterproductivejudicial interpretation of the 1980 Americans with Disabilities Act that required the 2008Americans with Disabilities Amendment Act (see Bickenbach 2012). A legal definition foreligibility for funding support for assistive technology, by contrast, should precisely define, in aclear and clinically grounded manner, the rehabilitative criteria of who could benefit fromassistive technology. Generally, the definition of any policy-targeted group needs to fit thepurposes of the policy, be that employment, education, transportation or health. For their part,academics and researchers from different disciplines and methodological approaches should usedefinitions that are congenial to their discipline or theoretical approach. Clinical definitions ofdisability, finally, can only be useful if they link disability to underlying health conditions(diseases, injuries, congenital disorders or ageing).

But the problem with the definition of disability is not that there are many of them – weshould expect that. The problem is that we forget that our definitions are merely toolsdesigned for specific purposes and start to think of them as universal and all-purpose. This isto confuse definition with conceptualisation, and defining with theoretical modelling. Toelevate a ‘fit for purpose’ semantic tool to a conceptual characterisation of disability is tocourt disaster; a legal definition appropriate for a human rights treaty would be useless andunfair as a tool for setting criteria for assistive technology eligibility, and a clinical definitionfor rehabilitative treatment planning would be, as the history of the Americans withDisabilities Act attests, a poor choice for a human rights document.

So, what is a conceptualisation or model? First, a conceptualisation is a theoretical and a prioriconstruction, not an empirical generalisation. Models are recommended intellectual structures formaking sense of complex phenomena, which then can be used to collect information andorganise our thinking for a variety of applications, such as creating historical explanations of socialreactions to people with disabilities; generating hypotheses about the nature and dynamics ofdisability experiences; explaining how people think about, and respond to, people with dis-abilities; creating statistical representations of prevalence and incidence of disability; providingtestable accounts of causes and longitudinal trajectories of living with disabilities; and so on (tothe limits of our intellectual imaginations). As theoretical structures, conceptualisations or modelscan be validated or invalidated, found useful or useless, determined to be internally coherent andcompatible with other theoretical constructs or perhaps not. They are not facts that can be shownto be true or false, they are constructions for organising our thoughts that either succeed or fail.

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As Altman notes, although many of the definitions of disability found in scholarly researchare actually models in disguise, a properly constructed model should be the basis, not for adefinition, but for a coherent suite of definitions, all fit for different purposes. Definitionsgrounded in models preserve their specificity for different purposes while being mutuallyconsistent at the conceptual level – but only if the model itself is consistent and coherent. Ifnot, then the definitions generated from it will be inconsistent and incoherent.

The final step in this development is a full-blown classification scheme, and once againAltman clearly expresses the relationship: a classification scheme transforms a model into anempirical instrument by means of a multifaceted process called ‘operationalisation’ that linksconcepts with observable phenomena (or facts) in the world. More specifically, a classificationidentifies categories or terms that exhaustively capture all empirical manifestations of theconstituent concepts of the model, and arranges this in a format that facilitates application(typically in a hierarchical ‘genus-species’ form – a classification lacking this structure is moreaccurately called a ‘terminology’). Each category is operationalised into observable criteriathat, hopefully, distinguish it from closely related categories. If all goes well, the classificationthen can be used to collect and collate information, first in terms of the hierarchical structure,and second in terms of the conceptual relationships that the model posits between the com-ponents of the classification. (In computer science, a model of this sort – meeting a few othertechnical requirements – is called an ontology.)

In the case of disability, only a few models or conceptualisations have been proposed, andmost of these are very similar and rely on closely analogous constituent concepts or compo-nents. With great appreciation to Altman for her compilation, Table 5.1 below displays, withsome modifications, her presentation of the basic models of disability, the names used toidentify the components from these models, and the meaning of the concept of disabilityinvolved.

It is important to summarise this complex picture because it puts the ICF into context.First, the ICF embodies a conceptualisation of disability grounded in the notion of humanfunctioning. In other words, according to the ICF, disability is derived from (and is whollyparasitical upon) the positive, multidimensional notion of human functioning. The centre ofgravity of the ICF is, in short, the universal human experience of functioning across a spec-trum, from the most basic biological function to activities simple to complex, to, ultimately,the most complex, and relatively more socially constructed, domains of participation.1Table5.1 makes it clear that the ICF model fully includes environmental factors, which are featuresof the physical environment (climate and population density), the human-built world (streets,homes, public buildings), attitudes, values and beliefs, and complex social, cultural and poli-tical institutions and systems – in short, anything in the world that, in interaction with thebackground health condition, will yield some level and kind of functioning across the threedimensions.

Another reason to situate ICF in this matrix is to show its family resemblance to otherconceptualisations while noting that the ICF is the only fully worked out, culturally andlinguistically tested, and evidence-based classification of functioning and disability. In thiscontext, the only other contender is the Québec model which has a rudimentary, thoughuntested, classificatory scheme attached to its model (Bickenbach et al. 1999). The Nagimodel – which is the basis for the Institute of Medicine models and the Verbrugge and Jetteapproach – although influential in the United States has had little exposure outside of thecountry and has never been worked out as a classification (a process that might reveal someof its own internal tensions). The ICF, in short, is an international statistical, clinical andscientific classification standard that embodies a conceptionalisation of functioning and


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Table 5.1 Models, components and conceptual meanings of ‘disability’

Model of disability Components of the model Conceptual meaning of ‘disability’

Nagi (Nagi 1965,1969, 1977, 1991)

� Pathology� Impairment� Functional limitation� Disability

Patterns of behaviour that evolve in situations oflong-term or continued impairments that areassociated with functional limitations

Social (UPIAS1976; Oliver 1990,1992)

� Impairment� Disability

Limited or loss of opportunities to take part incommunity life owing tophysical and social barriers

Verbrugge and Jette(1993)

� Pathology/disease� Impairment� Functioninglimitation� Disability

Disability is experiencing difficulty doingactivities in any domain of life due to a health orphysical problem

Institute ofMedicine (Popeand Tarlov 1991;Brandt and Pope1997; Field andJette 2009)

� Pathology� Impairment� Functional limitation� Disability

The expression of a physical or mentallimitation in a social context – the gap betweena person’s capabilities and the demands of theenvironment

ICIDH(WHO 1993)

� Impairment� Disability� Handicap

In the context of health experience, anyrestriction or lack (resulting from animpairment) of ability to perform anactivity in the manner or within therange considered normal for ahuman being

ICIDH-2(WHO 1997)

� Body function andstructure (Impairment)� Activity (activitylimitation)� Participation(participationrestriction)� Contextual factors:environmental andpersonal

Disability is an umbrella term comprisingimpairments as problems in bodyfunctions or structures as a significant deviation orloss, activity limitations as difficulties an individualmay have in the performance of activities, andparticipation restrictions as problems an individualmay have in the manner or extent of involvementin life situations.

Québec(DCP (Fougeyrollaset al. 1989, 1995,1998)

� Risk factors� Personal factors:� organic systems: integrity/impairment- capabilities: ability/disability� Environmental factors:- facilitator/obstacle- life habits� Social participation/handicap

No conceptualisation of disability as such, rather amodel of the ‘disability creation process’: ‘anexplanatory model of the causes and consequencesof disease, trauma and other disruptions to aperson’s integrity and development’.

disability. As an international standard, there are no competitors. The short answer as to whydisability studies researchers should be familiar with and apply the ICF is that it is the onlygame in town.

WHO, health professionals and the ICF

The World Health Assembly of the World Health Organization (WHO) endorsed the pub-lication and global use of the ICF in May 2001. The ICF is the successor classification of theInternational Classification of Impairments, Disabilities and Handicaps (ICIDH), which wasreleased for field trial purposes in 1980 and reissued in 1993. Responding to criticisms of thelittle-used ICIDH, WHO initiated a seven-year international, collaborative revision exercise,with input from hundreds of health professionals, epidemiologists, health statisticians, healthsystems analysts and members of disability advocacy groups. To ensure cross-cultural andlinguistic applicability of the ICF, after the first draft version was released (ICIDH-2 1997), itwas internationally piloted using a set of innovative cultural applicability field tests (reportedin Üstün et al. 2000 and Trotter et al. 2001).

The search for comparable health data standards has a long history. A standard vocabularyfor ‘causes of death’ – the most basic element of health statistics – was proposed as early as1785, and with the urging of statisticians and epidemiologists led to the proposal by theInternational Statistical Institute for an ‘International List of Causes of Death’ in 1891. Theneed for mortality data was proposed at the League of Nations in 1928, and was highlightedas a crucial biostatistical tool by the US Committee on Joint Causes of Death in 1945. By thetime WHO was launched after the Second World War, what came to be called the Inter-national Classification of Diseases, Injuries, and Causes of Death was in its sixth internationalrevision. The 11th edition of The International Statistical Classification of Diseases andRelated Health Problems (ICD) was released in 2019.

WHO’s entry into the debate about disability conceptualisation was through the epide-miological-statistical back door. Despite the simplistic perception that WHO’s approach todisability is as a purely medical phenomenon, in fact WHO’s presumption was very different.The famous WHO definition of health found in its 1948 Constitution (‘health is a state ofcomplete physical, mental and social well-being and not merely the absence of disease orinfirmity’) committed WHO to reject the medical model of disability as it had rejected themedical model of health. Arguably, WHO’s primarily statistical and epidemiological interestin disability was guided by the insight that sends a political message that is far clearer than thestandard advocacy rhetoric of the ‘social model’ of disability: if you want to understandhealth, you need to know more than just mortality and morbidity – what kills you and what

Model of disability Components of the model Conceptual meaning of ‘disability’

ICF (WHO 2001) � Body function andstructure (impairment)� Activity (activitylimitation)� Participation (participationrestriction)� Contextual factors:environmental andpersonal

As in the ICIDH-2; cf. ‘Disability is a difficultyin functioning at the body, person, or societallevels, in one or more life domains, asexperienced by an individual with a healthcondition in interaction with contextual factors’(Leonardi et al. 2006).


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makes you sick – you also need to know about the lived experience of being in suboptimalphysical, medical and social functioning. In other words, you need to know about func-tioning. It has been argued that the ICF also ushered in a new era of epidemiology in whichfunctioning must be understood on the same level as mortality and morbidity as the thirdindicator of health statistics (Stucki and Bickenbach 2017).

That physical and occupational therapists took into account the role of a person’s envir-onmental context – both physical and social – was not only natural, in many respects it waspart of their very raison d’être. As a rehabilitation therapist you cannot prepare a person toreturn to work after an accident unless you know what their workplace is like, its expecta-tions, its ambient social and psychological demands, and the impact of this context on thefunctioning of the individual. Medical practitioners regularly ignore the environment andfocus, appropriately enough, on biomedical phenomena. But even for them, totallyabstracting their patients from the world they live in would be a huge clinical and therapeuticmistake.

The ICF, to sum up, is a product of WHO’s epidemiological and statistical role as the pre-mier international public health organisation, one that fully recognises and builds on a person-environment interactive conception of both health and functioning/disability. The ICF,moreover, fully develops and operationalises this fundamental person-environment interactiveinsight and presents the results in the form of a collection of interlocking classifications.

ICF classifications

The ICF conceptualises – and provides an international language to describe – functioningand disability from the perspective of health. The ICF shares this focus with all of the otherconceptualisations mentioned above – except the original version of the social model inwhich impairments are totally decoupled from disability, namely that ‘disability has nothingto do with health’ (Oliver 1990). The ICF, by contrast, requires the presence of a healthcondition of some sort – a disease, injury, disorder or syndrome, or a health phenomenonthat is congenital or associated with wholly natural processes such as pregnancy and ageing.The move here is obviously not to turn ageing or pregnancy into diseases or abnormalities,but to highlight the obvious fact that these processes, albeit utterly natural (and in the lattercase unavoidable), have a negative impact on how the body functions.

The original version of the ICF conceptualisation followed the pattern of other models bydistinguishing three dimensions, or levels, of human functioning: functioning at the bodylevel (e.g. the functioning responsible for visual acuity, digestion or metabolism, as well asstructurally, e.g. missing limbs or spinal cord lesions); functioning at the level of the wholeperson (the complex functioning responsible for thinking, communicating, walking); andfunctioning at the social level (maintaining interpersonal relationships, attending school andworking). When there are decrements in functioning at the body level, the ICF uses theterm Impairment;2 problems relating to person-level capacities are called Activity Limitations;and at the social level, Participation Restrictions. Environmental factors and personal factorswere said to interact at all levels, but in different ways. Although impairments are entirelywithin the body, these problems can be worsened or lessened in interaction with the envir-onment (e.g. compromised breathing is worsened by air pollution). Activities (reading) ordomains of participation (working) are more fundamentally shaped (positively or negatively)by the impact of the overall context – environmental and personal. In case of complexactivities or social roles like being an employee or student, it would be impossible to describefunctioning without mentioning the environment.


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Each of these dimensions (except Personal Factors) are operationalised in the ICF as clas-sifications of specific domains, arranged hierarchically in the standard Linnaean, genus-specificformat. As a scientific tool, the ICF is primarily a set of classifications that creates an inter-national standard language (or information reference platform) for collecting data that isinternationally comparable. For most applications of the ICF, it suffices to say that it is aninternational standard suite of classifications. Its model and conceptualisation of functioningand disability is obviously intrinsic to the ICF, but the classifications that make up the ICFmanual itself can be, and often are, used without recognition of the conceptual model thatthe ICF operationalises.

ICF conceptualisation

The ICF model, like the others, is both multidimensional and interactive. The well-knowndiagram of the ICF model (see Figure 5.1) indicates as much, but it is dangerously open tobeing misconstrued. The problem is the arrows that link the components. It is tempting, butquite wrong, to automatically interpret these as arrows of causation, or temporal sequence.The ICF –partly to distance itself from its predecessor, the ICIDH, which had been criticisedon precisely these grounds – embodies an ‘etiologically neutral’ model that posits no a prioritheory about how disability comes about. In this sense, the classifications set out domains thatare states, not processes. The diagram, unfortunately, is somewhat naturally read as adescription of a process of disability creation. Research will show, on a case by case basis, howthe phenomenon of ICF-Disability actually arises from health condition epidemiology on theone hand, and features and patterns of contextual factors on the other. But the ICF modeldoes not itself describe these processes; instead, it offers an open-ended construct for carryingout the research that is necessary to understand actual instances of disability creation.

Figure 5.1 The ICF model


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At the same time, the ICF conceptualisation is not completely silent about the conceptsof functioning and disability either. In particular, the ICF conceptualisation makes explicittwo conceptual features of functioning and disability that the other models ignore or glossover. The first is universality. As the ICF is grounded in the neutral notion of humanfunctioning, it is intended for application to every human being, not to some pre-selectedsubset or minority group of people. Health, good or otherwise, is a universal feature ofhuman beings; likewise, functioning, at the optimal or less than optimal level, is part of thehuman condition. Epidemiologically, less than optimal functioning in one or moredomains is pretty much universally prevalent among humans across the lifespan. Althoughmany people are in excellent, good, adequate or sufficiently tolerable health, no one is inperfect health (for long).

This is trivial from a scientific perspective, but potentially contentious socially and politically.The point of insisting that ICF applies to every human being is that ICF-Disability is part ofthe human condition; it is not the mark or social indicator of a minority group. ICF-Disabilitydoes not share the logic of other more or less dichotomous aspects of human life, such as race,gender and social status. Everyone is highly likely (if they survive long enough) to experienceICF-Disability. To be sure, the impact or severity of ICF-Disability is not evenly distributedacross the population, but that is a different matter. A just society strives to distribute resourcesso that ICF-Disability does not invidiously or unfairly prejudice the lives and welfare ofanyone, whatever the degree of severity.

The second conceptual feature drives this point home and reinforces universalism.According to the ICF, Functioning and Disability are continuous rather than dichotomousconcepts. Simplistically, ICF-Disability is a matter of more or less, not yes or no. Take, forexample, visual acuity, the seeing function of being able ‘[to sense] form and contour, bothbinocular and monocular, for both distant and near vision’. Clearly, this is a matter of degreeof severity, ranging from complete absence of functioning (blindness) to some statisticallygenerated, population-based standard of normal, and from there on to some extrapolatedupper boundary of seeing talent.3 This feature of the logic of impairment means thataccording to the ICF it makes little sense to say that people are either impaired or not –again, epidemiologically speaking, everyone, at some point in their lives, will have or willacquire some degree of impairment in some domain that in interaction with their environmentwill result in ICF-Disability.

There are very good reasons that the ICF adopts this continuous approach rather thanopting for dichotomy. The principal reason is that any cut-off or threshold point along thecontinuum of a domain of functioning cannot be determined a priori but needs to reflect,and be determined in light of, the purposes for creating that threshold. The ICF has nothingto say about where thresholds are set – that is not its role. Although scientifically motivated,this feature of the ICF has a salient political advantage: it makes it clear that, for example,eligibility criteria for disability pensions are not a priori legitimate, or empirically determined,but are, and should remain, political decisions that, in a just society, should be reasonable, fairand transparent. At the extreme ends of the severity continuum, no one would be temptedto draw the threshold line (what use would that serve?); but in the vast middle ground, anycut-off might well be defensible.

The ICF’s conceptualisation of Disability flows from these two principles and themechanism of the person-environment interaction. Unfortunately, as originally described in2001, the interactive feature of the model was distorted by the decision to retain the longtradition in disability modelling – clearly visible in Table 5.1 – of insisting on the dimensionsof the body, the person, and the person in society.4 As a result, in the ICF there are three


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dimensions of decrement of functioning – Impairments, Activity Limitations, and Participa-tion Restrictions. When the time came to transform this into classifications the drafters faced ahurdle; there was no conceptually robust way of distinguishing domains of Activity fromdomains of Participation. Ultimately, the decision was made to produce a single classificationthat ‘merged’ the two. But then, how can Activity and Participation be different notions whenthey are identically operationalised in terms of their list of categories? Marcel Dijkers, a leadingresearcher in the rehabilitation community, put the problem this way:

Distinguishing between concrete, person-level, immediately observable Activitiesand more abstract, community-society level Participation is an old tradition inrehabilitation, and has been the basis of fruitful research and efficient administrationof services. However, to the degree that operationalization of the concepts involvesthe ICF in some fashion, the refusal of WHO as an authoritative source to make asplit ‘in practice’ (in the taxonomy) as well as in theory (the famous ICF conceptualframework) creates problems.

(2008)

Marcel Dijkers is quite correct that the ICF defines the two dimensions differently: ‘Activity isthe execution of a task or action by an individual’ and ‘Participation is involvement in alife situation’. So why is there only one merged list of categories? As Dijkers suggests, therehabilitation community is committed to a practical distinction between ‘person-level’ and‘community-social level’ but a glance at the chapter headings in the ICF Activities and Partici-pation classification (as shown in Table 5. 2) seems to suggest that they are mixed up together.

Arguably, up to Chapter 6, roughly, the categories refer to ‘person-level’, immediatelyobservable actions and tasks, whereas thereafter the categories are ‘community-social level’relationships and roles. Although the Nagi-related models do not go into sufficient classifi-cation detail to make it clear, the original ICIDH fully adopted this distinction: the ‘person-level’ ICIDH-Disability was ‘any restriction or lack (resulting from an impairment) of abilityto perform an activity in the manner or within the range considered normal for a humanbeing’; whereas the ‘social level’ ICIDH-Handicap was ‘a disadvantage for a given individual,resulting from an impairment or a disability, that limits or prevents the fulfilment of a rolethat is normal (depending on age, sex, and social and cultural factors) for that individual’(ICIDH 1980). What happened along the way to the ICF?5

Table 5.2 Chapter headings of ICF Activities and Participation classification

Activities and Participation

Chapter 1 Learning and applying knowledge

Chapter 2 General tasks and demands

Chapter 3 Communication

Chapter 4 Mobility

Chapter 5 Self-care

Chapter 6 Domestic life

Chapter 7 Interpersonal interactions and relationships

Chapter 8 Major life areas

Chapter 9 Community, social and civic life


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During the revision period that led up to the ICF there was simply never any agreement asto where the ‘person’ level ended and the ‘community and social’ level began. No proposedline of demarcation ever attracted a consensus. Proposed cuts in terms of ‘simple versuscomplex’ or ‘done alone versus done with others’ all failed to be conceptually robust enoughto adopt. Every professional group represented made the cut differently, depending on theirfocus or favoured theory. The other participants, mostly government representatives,expressed their intuitions, but these were as erratic as those of professionals. Eventually, someparticipants abandoned the process and argued for going back to the ICIDH (Brown 1993;Whiteneck et al. 1992). Into the mix was thrown the suggestion that the third dimension(whether it was called Handicap or Participation) had to be conceptualised as a disadvantagethat was wholly created by social forces of stigma and discrimination (see Bickenbach et al.1999). At a crucial meeting of collaborating partners it was suggested that, in essence,everyone could be right, and that although the Activities and Participation classificationwould continue to be united perhaps future research might find a better solution.

In fact, what further research demonstrated was that the ICF interactive model simplycould not be used rigorously if the interaction was operationalised in terms of what ulti-mately is an utterly artificial and conceptually unstable distinction between Activities andParticipation. The ICF statistical application now uses a far more conceptually and statisticallyrobust operationalisation that relies on the conceptual distinction between capacity and performance(see, for example, Stucki et al. 2017a, 2017b, 2017c).

In sum, capacity constitutes the intrinsic health state of a person, independent of environmentalimpact, whether positive or negative. Of course, being wholly independent of all environ-mental influences (including, for example, air, light and gravity) is not an empirically possiblestate of affairs – capacity is a wholly theoretical construct. According to the ICF, capacitycomprises, first, physiological, psychological functions and anatomical structures of the body,and second, by virtue of these functions in various combinations the emergent capacity of theperson to perform the range of human activities, from the very simple to the very complex.

The level of capacity of body functions and structures is exactly what one would measureto determine how well the function or structure is performing in comparison to some pre-determined clinical norm. These body functions and structures may be simple or integratedcomposites; the operation of a single muscle in the upper arm is an element of health, as is asingle bone in the wrist. If the single muscle is paralysed or the bone broken, the individualhas a health problem. Moreover, the movement of the leg, or the locomotion of the entirebody, is a complex and integrated body function; the structure of the upper body is a com-plex and integrated body structure. To use a helpful metaphor, all these simple and complexbody functions and structures that are constitutive of health are ‘under the skin’ and the mainfocus of the traditional biomedical approach to health that finds its application in all forms ofclinical care.

But capacity also applies to domains of Activities and Participation, although here there is asubtle but important complication. Seemingly simple activities such as walking are obviously notsimple at all, but involve a large number of physiological and mental functions and body struc-tures all working together in an integrated and coordinated manner. The construct of capacityapplies to walking but, conceptually speaking, it embodies the fact that walking is more than thesum of all these body functions and structures. Walking is not merely a coordinated action, it is acoordinated and integrated human activity. The capacity to walk is therefore an emergent prop-

erty – is it literally more than the sum of the capacities of its component parts.What is true of walking is true of all complex, coordinated and integrated actions such as

holding conversations with others, remunerative employment or secondary education, and


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participating in community and political activities. Even trying to identify the componentparts of these complex domains is challenging, since different examples under the samedomain of working, being a student, family member, or citizen will require a very differentcollection of parts that are socially constructed in myriad ways. Ultimately, however, capacityworks precisely as it does everywhere else: it is an emergent property that can only be sta-tistically described.

Performance, by contrast, is not a theoretical construct but the factual description of what actu-

ally takes place. The performance in real life of any human action always depends on features ofthe actual environment (physical, human-built, social, political or cultural), as these shape all ofwhat we do and, by extension, what complex social roles we perform (spouse, father, student,employee, and so on). Environmental factors may make it harder to perform activities (e.g.poor air quality, inaccessible and non-accommodating physical environments, or stigma anddiscrimination, and social exclusion), or make it easier to perform activities (e.g. assistive tech-nology, accessible buildings, supportive attitudes, and social arrangements). Thus, capacity andenvironmental factors are the two sets of determinants of the extent of performance.

Performance describes how our health state plays out in the real world, in which bothcapacity and environmental factors are determinants. Our lived experience of health is thusdetermined both by our intrinsic health state and the overall physical and social environmentin which we live and act. Collecting relevant information about simple activities such likegrasping, standing or even walking might require nothing more than direct observation,perhaps in different environments. Information about the performance of complex activities,such as making friends, going to school or participating in cultural activities, is far moreintricate, socially constructed, and difficult to collect. But, in the end, it is what can truly besaid about what human beings do and the roles that they inhabit.

The notion of performance is key to the ICF conception of Disability. ICF-Disability isan outcome of an integration of two sets of determinants – intrinsic health and extrinsic envir-onment – and although in some cases (of very severe impairments) this outcome may be createdentirely by the underlying capacity limitation, it is far more common that Disability is an out-come of the combined effect of capacity limitation and environmental factors acting as barriers.

The ICF and the CRPD

At this juncture it seems relevant to compare the ICF’s characterisation of Disability with thatof the United Nations’ Convention on the Rights of Persons with Disabilities (CRPD) (UN2007). In both cases we are talking about characterisations of disability rather than definitions.That is important to remember since, for different reasons, both need to be open to alter-native definitions fit for different purposes – that, nonetheless, are consistent with an under-lying conception of disability. Although the term is not formally defined in Article 2 –

Definitions, in the preamble of the CRPD ‘disability’ is said to be ‘an evolving conceptand … results from the interaction between persons with impairments and attitudinal andenvironmental barriers that hinders their full and effective participation in society on an equalbasis with others’. In Article 1 – Purpose, ‘persons with disabilities’ are said to ‘include thosewho have long-term physical, mental, intellectual or sensory impairments which in interactionwith various barriers may hinder their full and effective participation in society on an equalbasis with others.’

On the face of it, these remarks suggest, as Katrina Kazou has argued, that the CRPDcharacterisation very much resembles that of the ICF (2017). That the CRPD could profitfrom the ICF approach was indeed suggested at the time that the CRPD was being finalised


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(Leonardi et al. 2006), but as Kazou has carefully traced in the documents of the Ad HocCommittee responsible for drafting the CRPD the official line was that the CRPD mustrepresent the ‘social model’ of disability, which the ICF did not. This position, Kazou argues,was more posture than fact since, at least in the British version of the social model of dis-ability, impairment plays no role in the creation of disability (‘disability has nothing to dowith health’), only disabling social barriers do. In other words, the CRPD does not adopt thesocial model either.

But Kazou is only partially correct about this analysis since strictly speaking the CRPDdefinition, although it roughly conforms to the ICF interactive model, fundamentally divergesfrom it at a crucial point. Recall that the CRPD defines a ‘person with disabilities’ as someonewith long-term impairments which in interaction with barriers may hinder their full andeffective participation. The ICF version does not use the word ‘may’, but instead characterises aperson with disabilities as someone with an impairment who is hindered by social barriers thatlimit full and effective participation. ICF-Disability is that interaction. The difference is subtle,but important. In the CRPD version it is sufficient that a person with disabilities be a personwith long-term impairments – whether or not those impairments in interaction with barriersresult in limited participation. In other words, ironically, the CRPD adopts something veryclose to the medical model in its characterisation of a ‘person with disabilities’.

This may be a drafting error, but it also may indicate a fundamental divergence in twoperspectives on disability that are unfortunately regularly conflated (see Bickenbach et al. 2017).First, there is ICF-Disability, the ubiquitous feature of the human condition, experienced byeveryone during the course of their lifetime to one degree or another. There is also a far moresociopolitical sense of disability (captured by the phrase ‘persons with disabilities’) that refers toa subset of people who experience ICF-Disability, namely those with severe or socially salientimpairments.

It is sensible to make this distinction. The phenomenon of impairment may be universaland continuous, but people in this subgroup will invariably face barriers that, in interactionwith their impairments, limit their social participation, and certainly historically this has beenthe case. It is an open question whether this means that this minority group possesses a ‘dis-ability identity’ (Shakespeare 1996), or whether, as a lawyer might say, it is a ‘discrete andinsular’ minority. But there is little doubt that, experientially, living with paraplegia, forexample, is fundamentally different from living with minor short-sightedness.

But if there are these two senses of ‘disability’ – a universal phenomenon and a social iden-tifier of a minority group – the question is should the two senses be distinguished when wecraft our health and social policy or when we construct our buildings and plan our cities? ICF-Disability entails that people are on a continuum of impairment-related needs (roughly deter-mined by severity), and although ‘people with disabilities’ have more prevalent and moresevere needs, that call upon a more focused social response, it would be wrong and unjust toassume that people with less serious impairments do not have needs that call upon a socialresponse. Undoubtedly, severe or socially salient impairments often create socially constructedhurdles to full inclusion that must be addressed. But we should not forget either that everyhuman being is on a trajectory of ageing that moves in the direction of severity (resulting bothfrom age-related chronicity and multi-morbidity) and that people who currently have mild andmoderate impairments today will become, in the absence of social interventions, people withsevere impairments tomorrow. As American sociologist of disability Irving Zola argued sometime ago the minority group approach to disability has been politically effective in focusingattention on the needs of a sub-population, but ultimately we should steer clear of the minoritygroup approach and move towards a universal understanding that acknowledges, and socially


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responds to, the continuity of impairment that everyone, over the course of their lifespan,experiences (Zola 1989)

The ICF and disability studies

So, back to our central question – how should the ICF be received by disability studiesscholars? In the early days the ICF attracted bizarre criticisms, for example that the ICF was aprecursor to eugenics and the elimination of people with disabilities (Pfeiffer 2000), or thekneejerk claim that it reflected the ‘medical model’ of disability, repeated by the InternationalDisability Caucus even during the drafting of the CRPD (Kayess and French, 2008). I hopeenough has been said to lay these objections aside.

But it remains to be asked whether disability studies scholars should use the ICF in theirwork, should be interested in it as a viable conceptualisation or, on the other hand, whetherthey are fully justified in dismissing it as irrelevant. I strongly believe the latter would be amistake – a missed opportunity. There are many reasons for this, but I have already hinted atthe most pragmatic one: there is no viable competitor to the ICF. Political rhetoric mobilisespeople, and that is often a very good thing. But at the end of the day unless one is attractedto anti-Enlightenment belief systems that deny the legitimacy of the scientific method or theneed for evidence-based social policy, there are no other options to the collection and ana-lysis of functioning information than the ICF. Scientifically validated tools and the judiciousapplication of the scientific method are hardly immune from political manipulation, but if itis truth you are after, there are no alternatives.

This very general point aside, the ICF has much to recommend it. As an epidemiologicaltool it structures data collection about disability in a manner that fully acknowledges, andoperationalises, the revolutionary kernel of truth that has always been at the core of the socialmodel, namely that disability is the outcome of an interaction between features of the personand features of the person’s physical, human-built, attitudinal and social environment. Therecognition that impairment, and therefore the risk of disability, is a universal phenomenonover the course of the human lifespan, is both scientifically obvious and politically a verypowerful message. It is the ultimate message of inclusion.

Effective and inclusive health and social policy depends on good data, and accumulatingsound and valid data about the experience of disability has always been a challenge. A fewcountries are revising their basic population-based disability information collection modalities –censuses, population household surveys and administrative records – in order to more fullyutilise the ICF model as a template. Standard population surveys and questionnaires that for-merly only asked about diseases and impairments are, in several countries, now being aug-mented by questions about levels of participation, and the presence or absence ofenvironmental barriers and facilitators.6 At present, the methodology only exists in standarddata collection instruments to collect information about the environmental barriers and facil-itators that impact at the individual level. As disabled people’s organisations have long argued,the environmental barriers that have the greatest impact are those that are systematic andstructural, such as how information about disability is collected. Research is needed to findvalid and reliable ways – beyond individual anecdotal evidence – of collecting informationabout these barriers. Once again, political rhetoric motivates progressive political change, butonly a scientifically validated tool like the ICF can effect permanent change at the technicallevel, where the rubber hits the road (cf. Zola 1993).

There can be no more relevant application of the ICF in this regard than that of itspotential role in monitoring the implementation of the CRPD itself (see Bickenbach 2011).


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This human rights treaty is a unique tool for empowerment and progressive policy because,although the rights enunciated in its substantive articles have been expressed many times in thepast, the CRPD also requires states to live up to the responsibilities created by their ratificationby instituting mechanisms that monitor the progress of implementation. Specifically, Article31 – Statistics and Data Collection requires states parties to ‘collect appropriate information,including statistical and research data, to enable them to formulate and implement policies togive effect to the present Convention’. These data are relevant to the obligation set out inArticle 33 – National Implementation and Monitoring to ‘maintain, strengthen, designate orestablish within the State Party, a framework, including one or more independent mechanisms,as appropriate, to promote, protect and monitor implementation of the present Convention’.

This human rights mandate creates a role for disability studies scholars to provide thenecessary social scientific expertise to develop the data streams and indicators for an imple-mentation monitoring mechanism. Using data and monitoring technology in this way trans-forms political rhetoric into evidence-based policy. One indication of the importance ofmaking this shift is the perplexing example of the academic debate involving the 1990Americans with Disabilities Act and its effectiveness over two decades to improve theemployment rate for persons with disabilities. Faced with challenges from the political rightthat anti-discrimination laws are counterproductive (Epstein 1992 ), advocates of the Actfound themselves at a loss since, in the absence of indicators of effectiveness and, moreimportantly, in the absence of relevant data, they found it difficult to factually support theirposition (NOD 2000; Krieger 2003). The importance of anti-discrimination law is ortho-doxy, but orthodoxy without empirical evidence is empty. The CRPD offers the hope thatgood science and reliable data can come to the aid of human rights orthodoxy, but that canonly happen if tools like the ICF can be brought to bear on the empirical challenge ofmaking the case for the implementation of human rights.

It may be time for disability studies research to mature and leave behind its ‘in your face’radical rhetorical stage and towards a research phrase that is both more transparent and moresystematic. It may also be time to set aside talk of ‘paradigm shifts’ in favour of the developmentof performance indicators of progress towards feasible and progressive social goals. There remainsa vast amount of empirical research that needs to be done on basic epidemiology, data compar-ability, outcome measurement, international data comparability, health and social systemsresearch, and assistive technology and personal assistant utilisation and service delivery research.There is no conflict between participatory, emancipatory research serving overtly progressiveends and data-driven, systematic, interdisciplinary research that meets all the standards of socialscientific rigour.

But to my mind the most persuasive argument for disability studies scholars to investigatethe ICF’s conceptual foundations and appreciate its potential progressive power in a widevariety of applications and policy sectors, is that their skills are required to craft even-handedcritiques of the ICF that will not only reveal its inherent flaws but will provide a way tomove beyond them so that the full potential of the ICF might be realised.

Notes

1 The term ‘functioning’, it must be emphasised, is a technical term in the ICF – in English and othernatural languages it is awkward to talk about ‘human functioning’, and certainly peculiar – arguablyungrammatical – to say that breathing, muscle strengthening and writing a letter to a friend are allexamples of human functioning – as indeed they are in the ICF.

2 Disability conceptualisation and definition is fraught with confusion created by the practice of using thesame words in very different ways. When this is done explicitly, and care is taken to define how a term


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is being used, then confusion is usually kept at bay. However, typically, different usages are whollyunexplained – as if everyone agrees (or should agree) with the author’s particular usage, leading torampant confusion. To avoid confusion here, I have adopted the convention of capitalising the ICF’sterminology (or, even more carefully, I use the term ‘ICF-Disability’).

3 Although it is silent on this point, it is arguable that the ICF range for all Functioning tops up atpopulation normality, leaving the field open for super-functioning, as in athletic ability. The fact thatthis upper bound is dynamic and is likely to change over time is easily accommodated in the operatingmodel and classification and coding scheme of the ICF (see Bickenbach 2008).

4 All of the models in Table 5.1 (except the British social model) recognise other components of disabilityas well, but ‘pathology’ (as in Nagi and Verbrugge and Jette and the Institute of Medicine) or ‘riskfactors’ (as in the Québec model) or ‘contextual factors’ (as in Québec, the ICIDH, the ICIDH-2 andthe ICF) are, properly speaking, determinants of disability, not dimensions of disability.

5 It is perhaps appropriate to mention here that from 1995 to 2002 I was involved as either a full or part-timeemployee of the unit at WHO responsible for the internationally collaborative ICIDH revision process, andfor the early implementation of ICF.

6 By way of example consider the Canadian Participation and Activity Limitation Survey (PALS 2002),available at www.statcan.gc.ca/pub/89-577-x/index-eng.htm, and the more recent Irish National Dis-ability Survey (2006), details of which can be found on the Central Statistical Office website, http://www.cso.ie. Both surveys were explicitly based on the model of Disability found in the ICF. By con-trast, the so-called Washington Group Questions – which many countries favour because they are easy,and inexpensive, to implement in existing surveys – provide misleading results on disability since theyonly capture the perspective of capacity and ignore the impact of the environment (see www.washingtongroup-disability.com/).

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Disability: What’s in a Name? The Lancet 368(9543): 1219–1221.Nagi, S. Z. (1965) ‘Some Conceptual Issues in Disability and Rehabilitation’, in M. Sussman (ed.) Sociology

and Rehabilitation, Washington, DC: American Sociological Association, pp. 100–113.Nagi, S. Z. (1969) Disability and Rehabilitation: Legal, Clinical and Self-Concepts and Measurement, Columbus:

Ohio State University Press.Nagi, S. Z. (1977) ‘The Disabled and Rehabilitation Services: A National Overview’, American Rehabilitation 2

(5): 26–33.Nagi, S. Z. (1991) Disability Concepts Revisited: Implications for Prevention’, in A. M. Pope and A. R.

Tarlov (eds) Disability in America: Toward a National Agenda for Prevention, Washington, DC: NationalAcademy Press, pp. 309–327.

National Council on Disability (NCD) (2000) Promises to Keep: A Decade of Federal Enforcement of the

Americans with Disabilities Act, Washington, DC: NCD.Oliver, M. (1990) The Politics of Disablement, Basingstoke: Macmillan.Oliver, M. (1992) ‘Changing the Social Relations of Research Production?’ Disability, Handicap and Society 7:

101–120.PALS (2001) Canadian Participation and Activity Limitation Survey, Ottawa: Statistics Canada. Available at

www.statcan.gc.ca/pub/89-577-x/index-eng.htm.Pfeiffer, David (2000) ‘The Devils are in the Details: The ICIDH2 and the Disability Movement’, Dis-

ability and Society 15(7): 1079–1082.Pope, A. M. and Tarlov, A. R. (eds) (1991) Disability in America: Toward a National Agenda for Prevention,

Washington, DC: National Academy Press.Shakespeare, T. (1996) ‘Disability, Identity and Difference’, in C. Barnes and G. Mercer (eds) Exploring the

Divide, Leeds: Disability Press, pp. 94–113.Shakespeare, T. (2013) Disability Rights and Wrongs, 2nd edn, London: Routledge.Stucki, G. and Bickenbach, J. (2017) ‘Functioning: The Third Health Indicator in the Health System and

the Key Indicator for Rehabilitation’, Eur J Phys Rehabil Med 53(1): 134–138.Stucki, G., Bickenbach, J. and Melvin, J. (2017a) ‘Strengthening Rehabilitation in Health Systems

Worldwide by Integrating Information on Functioning in National Health Information Systems’, Am J

Phys Med Rehabil 96(9): 677–681.Stucki, G., Prodinger, B. and Bickenbach, J. (2017b) ‘Four Steps to FollowwhenDocumenting Functioning with

the International Classification of Functioning, Disability and Health’, Eur J Phys Rehabil Med 53:144–149.Stucki, G., Bickenbach, J., Selb, M. and Melvin, J. (2017c) ‘The International Classification of Function-

ing, Disability and Health’, in W. Frontera (ed.) DeLisa’s Physical Medicine and Rehabilitation: Principles

and Practice, 6th edn, Philadelphia, PA, Wolters Kluwer.The Americans with Disabilities Act (1990) Pub. L. No. 101–336, 104 Stat. 328.The Americans with Disabilities Act Amendment Act (2008) Pub. L. No. 110–325, 122 Stat. 3553.Trotter, R. T.II, Üstün, T. B., Chatterji, S., Rehm, J., Room, R. and Bickenbach, J. (2001) ‘Cross-Cul-

tural Applicability Research on Disablement: Models and Methods for the Revision of an InternationalClassification’, Human Organization 60(1): 13–27.

Union of the Physically Impaired Against Segregation (UPIAS) (1976) Fundamental Principles of Disability,London: Union of the Physically Impaired Against Segregation.


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United Nations (2007) United Nations Convention on the Rights of Persons with Disabilities New York, New York:United Nations. Available at www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/convention-on-the-rights-of-persons-with-disabilities-2.html.

Üstün, T. B., Chatterji, S., Bickenbach, J. E., Trotter, R. T.II and Saxena, S. (2000) Disability and Culture:

Universalism and Diversity, Bern: Hogrefe and Huber.Verbrugge, L. and Jette, A. M. (1993) ‘The Disablement Process’, Social Science and Medicine 6(1): 1–14.Whiteneck. G.Charlifue, S., Gerhart, K., Overholser, J. and Richardson, G. (1992) ‘Quantifying Handicap: A

New Measure of Long-Term Rehabilitation Outcomes’, Arch Phys Med Rehabil 73(6): 519–526.World Health Organization (WHO) (1980) International Classification of Impairments, Disabilities and Handicaps

(ICIDH), Geneva: WHO.World Health Organization (WHO) (1993) International Classification of Impairments, Disabilities, and Handicaps:

A Manual of Classification Relating to the Consequences of Disease, Geneva: WHO.World Health Organization (WHO) (1997) The International Classification of Impairments, Activities and Participa-

tion (ICIDH-2), Geneva: WHO.World Health Organization (WHO) (2001) International Classification of Functioning, Disability and Health

(ICF), Geneva: WHO.Zola, I. (1989) ‘Toward the Necessary Universalizing of a Disability Policy’, Milbank Quarterly 67: 401–428.Zola, I. (1993) ‘Disability Statistics, What We Count and What It Tells Us: A Personal and Political

Analysis’, Journal of Disability Policy Studies 4: 9–15.


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http://www.un.org/

http://www.un.org/

6

DISABILITY ANDHUMAN RIGHTS

Lucy Series

The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD)was the first human rights treaty to be developed by disabled people, for disabled people.Adopted by the UN in 2006, the Convention embodies and enshrines key tenets of con-temporary disability scholarship and activism – from ‘nothing about us without us’ to a socialunderstanding of disability. The CRPD is fertile terrain for disability scholarship – empirical,theoretical and critical. This chapter provides an overview of the history of human rights, thedevelopment of the disability Convention, and its main features and achievements. Thechapter introduces some key areas of discussion and debate emerging in the literature ondisability and human rights.

Human rights prior to the disability Convention

Human rights are legal and moral norms that aim to both define and protect fundamentalfreedoms and entitlements for all humans. An appreciation of contemporary disability humanrights, as embodied by the CRPD, requires an understanding of what came before.

Rights, revolutions and the Enlightenment

There are examples of charters or bills of rights dating back to the ancient world, but ourmodern understanding of rights (in the West, at least) is closely linked to Renaissancehumanism and the Enlightenment (Nickel 2017). In the seventeenth and eighteenth centuriesrights became the ideology of revolutionaries, enshrined in the English Bill of Rights (1689),the French Declaration of the Rights of Man and the Citizen (1789), and the Bill of Rights inthe United States Constitution (1791). Klug (2000: 71–72) describes this ‘libertarian wave’ ofrights as primarily concerned with ‘liberty from state tyranny and religious persecution’, con-structing the state as ‘always and forever a threat to individual freedom’.

This body of rights rests on a fictive liberal subject – law’s ‘classic contractor’ who is‘morally and legally accountable for his actions because his actions are guided by reason’,standing ‘alone, independently of all other individuals’, and capable of enforcing his ownrights (Naffine 2003: 66). It is underpinned by the often inherently ablest liberal philosophiesof John Locke, Immanuel Kant, Jean-Jacques Rousseau, Thomas Paine and John Stuart Mill.

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Critiquing or adapting liberal theory for people with cognitive impairments is now a majorintellectual project for contemporary political theory and moral philosophy (e.g. Kittay andCarlson 2010; Clifford Simplican 2015; Nussbaum 2009; Vorhaus 2005).

Human rights: The post-war settlement

‘Human rights’ as we know them today emerged from the aftermath of the Second WorldWar. They are embodied by the Universal Declaration of Human Rights (UDHR), adoptedby the UN in 1948, and the succession of binding international Conventions that followed.The norms underpinning these instruments transcended and expanded upon earlier liberaltheories of rights.

Human rights as an international concern

Whereas previously rights were legislated at the national level, contemporary human rightsare both guaranteed by, and play a role in guaranteeing, a global political order. During thetwentieth century the abuse of minorities came to be regarded as a threat to peace and sta-bility (Bates in Moeckli et al. 2014). The preamble to the UDHR describes the ‘equal andinalienable rights of all members of the human family’ as ‘the foundation of freedom, justiceand peace in the world’.1 Within this ‘public morality of world politics’, each person ‘is asubject of global concern’ (Beitz 2009: 1).

The use of international legal and diplomatic machinery to enforce and monitor humanrights marks the end of a ‘virtually unquestioned supremacy of the doctrine of national sover-eignty’ (Klug 2000: 96). Critics of human rights argue that this form of ‘global governance’threatens national liberal democracy (Holbrook and Allan 2017) and privileges ‘new forms of“ethical” elite paternalism’ (Chandler 2001: 72). Critical legal academics note concerns aboutWestern moral imperialism (Donnelly 1984), others question whether rights really are ‘a barrieragainst domination and oppression, or the ideological gloss of an emerging empire?’ (Douzinas2007: 1). Few proponents of human rights engage with these critiques, often viewing themmore as a ‘matter of faith rather than reason’ (Besson in Moeckli et al. 2014: 35). Yet they dohave an impact on the willingness of states to sign and ratify binding Conventions like theCRPD, and on the domestic reception of criticisms from the international human rightscommunity.

Universalism: dignity and equality

The rights-based constitutions of the Enlightenment coexisted alongside the denial of rightsto large swathes of the population – notably women, children, slaves, religious and ethnicminorities, and colonised peoples. In contrast, a central tenet of contemporary human rightsis universalism. The twin foundations of this universalism are respect for the ‘inherent dignity’of all humans, and equality. Article 1 of the UDHR states that ‘all human beings are bornfree and equal in dignity and rights’.

The concept of ‘human dignity’ notoriously evades straightforward definition (Feldman1999). Klug (2000: 101) suggests that for the drafters of the UDHR, surveying the‘inhumanity’ that had been practised by individuals towards their fellow human beings,‘freedom was an insufficient basis on which to build the peaceful and tolerant world theysought to achieve’. It has been suggested that dignity, unlike liberty, involves recognising andresponding to human vulnerability (Neal 2012; Turner 2006).

Disability and human rights

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Dignity, rather than liberty, as the foundation of human rights, fundamentally transformsthe relationship between the individual and the state. The state must do more than simplyrefrain from interference and oppression, and must take proactive steps as the guarantor ofhuman rights (Klug 2000). A focus on civil and political rights alone ignores the materialconstraints on freedom posed by economic inequality (Marx 1844). But ‘dignity’ provided aconceptual vehicle for introducing the ‘economic, social and cultural rights indispensable forhis dignity’ (Article 22 of the UDHR), including the right to ‘work’ (Article 23 of theUDHR), ‘rest and leisure’ (Article 24 of the UDHR), ‘to a standard of living adequate for thehealth and wellbeing of himself and of his family’ (Article 25 of the UDHR), to education(Article 26 of the UDHR) and to freely participate ‘in the cultural life of the community’ (Article27 of the UDHR).

Although the UN General Assembly recognised in 1950 that ‘the enjoyment of civil andpolitical freedoms and of economic, social and cultural rights are interconnected and inter-dependent’, they are afforded different status and protection under international law. Economic,social and cultural rights are subject to the doctrine of ‘progressive materialisation’ to the max-imum of a state’s available resources. Civil and political rights – such as rights to liberty, to vote,and equal recognition before the law –must be realised immediately (van Boven in Moeckli et al.2014). The distinction is also reflected in separate Covenants at the UN level, including the 1966International Covenant on Civil and Political Rights and the 1966 International Covenant onEconomic, Social and Cultural Rights. The 1950 European Convention on Human Rights(ECHR) chiefly enshrines civil and political rights.

The seeds of a disability human rights settlement

Several characteristics of the post-war human rights settlement were promising from a disabilityperspective: states must do more to protect rights than merely refrain from intervention, aconcern with social, economic and cultural matters as well as civil and political rights, andthe universalism and emphasis on equality inherent in human rights discourse requiresreinforcement. Yet by the turn of the century, disabled people and disability organisationswidely perceived that these instruments were failing to deliver this promise. There weremounting calls for a binding international Convention to specifically address the rights ofdisabled people. Yet if previous human rights instruments were universal in scope, whyshould such a Convention be needed?

Towards a binding Convention on the Rights of Persons with Disabilities

Despite the proclaimed universalism of human rights instruments such as the UDHR, theICCPR and the ICESCR, several scholars have argued, convincingly, that disabled peoplewere invisible in the international human rights community (Dhanda 2006–2007; Kanter2015; Kayess and French 2008; Quinn 2009). The example that is frequently given is the textof Article 2 of the UDHR, replicated in Article 19 of the ICCPR and in Article 14 of theECHR. This non-discrimination provision was introduced to protect minorities perceived asbeing particularly at risk of discriminatory treatment and human rights abuses, but there is nomention of disabled people:

Everyone is entitled to all the rights and freedoms set forth in this Declaration, withoutdistinction of any kind, such as race, colour, sex, language, religion, political or otheropinion, national or social origin, property, birth or other status.


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As Kanter (2015: 26) notes, although millions of disabled people were killed and maimed bythe Nazis, they ‘were simply not seen as worthy of human rights or legal protection’ by thedrafters of these Conventions. Even worse than merely invisible, the framers of the ECHRdecided against an explicit prohibition on forced sterilisation because many European statesstill operated eugenic policies of involuntary sterilisation of disabled people (EuropeanCommission of Human Rights 1955).

From the 1970s onwards there was slow recognition that disabled people were rights bearersunder international law. The UN adopted non-binding ‘declarations’ on the rights of ‘mentallyretarded’ (1971) and ‘disabled persons’ (1975). These declarations employed medical modeldefinitions of disability and recognised equal rights only ‘to the maximum degree of feasibility’(United Nations 1971).

The year 1981 was proclaimed by the UN as the ‘International Year of Disabled Persons’ andspecial rapporteurs were appointed to prepare global reports on the conditions of disabled people(Daes 1986; Despouy 1991). Despouy reported that:

[Persons with disabilities] frequently live in deplorable conditions, owing to thepresence of physical and social barriers which prevent their integration and fullparticipation in the community. As a result, millions of children and adultsthroughout the world are segregated and deprived of virtually all their rights, andlead a wretched, marginal life.

(Ibid.: para. 3)

In 1991 the UN adopted the ‘MI Principles’ on ‘the protection of persons with mental illness andthe improvement of mental health care’. Only one disability organisation (Disabled Peoples’ Inter-national) had observer status on the working group; the other observers were medical, legal orreligious organisations (Steel 1991). Disability organisations acknowledged the advocacy potential ofthe MI Principles, but noted their inherent paternalism (Rosenthal and Rubenstein 1993).

The second half of the twentieth century witnessed a global backlash against the institu-tionalisation of disabled people – in rhetoric at least, if not always in reality. Politicallyengaged organisations led by disabled people developed distinctive understandings of rightsand equality, based around social and minority rights understandings of disability. Theycampaigned for equality, inclusion and rights to independent living. Key milestones at thenational level – such as the Americans with Disabilities Act 1990 – preceded equivalent rightsin international law. The Organization of American States adopted the first internationalprohibition on disability discrimination in 1999, in the shape of the Inter-American Con-vention on the Elimination of All Forms of Discrimination against Persons with Disabilities.In contrast, the European Court of Human Rights did not recognise disability discriminationuntil 2009 (Glor v. Switzerland).

The UN began to develop binding Conventions addressing the concerns of specificcommunities, including women (UN 1979), children (UN 1989), and migrant workers (UN1990). It introduced innovative monitoring and enforcement mechanisms to prevent tortureand inhuman and degrading treatment in places of detention (UN 2006). Despouy (1991: 72)noted that disabled people were ‘at a legal disadvantage in relation to other vulnerable groupssuch as refugees, women, [and] migrant workers’. Disability advocacy organisations began todesignate policy officers to follow human rights developments (Quinn and Degener 2002).There were calls for a disability Convention (Darrow 1996).

At the turn of the millenium, national and international disability organisations met inBeijing, People’s Republic of China, ‘to develop a new century strategy for the full


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participation and equality of people with disabilities’. Noting the failure of earlier human rightsinstruments to significantly improve the lives of people with disabilities, these organisationscommitted ‘to strive for a legally binding international convention on the rights of all peoplewith disabilities to full participation and equality in society’ (Disabled Peoples’ Internationalet al. 2000).

In 2001 a UN resolution sponsored by Mexico resulted in the establishment of an ad hoccommittee to consider proposals for a Convention. The ‘Ad Hoc Committee on a Compre-hensive and Integral International Convention on the Protection and Promotion of the Rightsand Dignity of Persons with Disabilities’ met eight times to discuss and negotiate the text of theConvention (UN Enable).

The Convention was formally adopted by the UN on 13 December 2006 and enteredinto force on 3 May 2008. The CRPD human rights treaty was the fastest negotiated treatyat the UN, and the second fastest to be ratified, with the most signatures on its opening day(Stein and Lord 2009). It was the first UN human rights treaty to be negotiated and signedby the European Union (EU), as a ‘state’ in its own right. But the CRPD’s most significantlegacies are the means by which it was negotiated and the ‘paradigm shift’ it promises inapproaches to disability and human rights.

The UN Convention on the Rights of Persons with Disabilities

A ‘paradigm shift’ in human rights

The UN Convention on the Rights of Persons with Disabilities has been widely hailed byscholars and activists as a ‘paradigm shift’ in approaches to disability and human rights (e.g.Kanter 2006–2007; Lawson 2006–2007; McKay 2006–2007; Kayess and French 2006–7).Kuhn ([1962] 2012) developed the concept of a ‘paradigm shift’ in his landmark book The

Structure of Scientific Revolutions. ‘Normal science’ proceeds within a particular paradigm, basedon a specific epistemology and ontological understandings that both define the nature of theproblems and prescribe the approach to solving them. Anomalies begin to accumulate, whichinitially are disregarded but which eventually result in a crisis for the paradigm itself. Ulti-mately, the crisis is resolved by the introduction of a new paradigm, which can make senseof these anomalies, but only through an ‘epistemological break’ with the old paradigm.

The language of a ‘paradigm shift’ has been used to convey a sense that the existing para-digm of human rights has been ineffective for disabled people, and that what is required isnot merely a tinkering with existing human rights instruments but a fundamental shift intheir underlying epistemologies and norms. It signals that the CRPD will be perceived bymany as disruptive, and will involve an intellectual ‘battle’ for acceptance, necessitating the‘reconstruction of the field from new fundamentals’ and changing ‘some of the field’s mostelementary theoretical generalizations as well as many of its paradigm methods and applications’(Kuhn [1962] 2012: 84).

The following description by Thomas Hammarberg, a former Council of Europe HighCommissioner for Human Rights who initiated and oversaw many CRPD-inspired initiatives,captures the flavour of this paradigm shift:

The last decades have been marked by a shift in thinking. From viewing disability asa personal problem that needs to be cured (the medical model), we have come tosee the source of the problem: the society’s attitude towards persons with disabilities.This means that we have to act collectively as a society in order to remove the


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barriers that hinder persons with disabilities from living among us and contributingto our society, and to fight against their isolation in institutions or in the back-rooms of family homes. Finally, there has been a shift from welfare policies andcharity as the only tools for dealing with disability, to an approach based on humanrights and equality.

(2011: 639)

It has in its sights many of the normative and epistemological underpinnings of earlier iterationsof disability human rights – rejecting, for example, the medical model understanding of dis-ability that runs through the MI Principles and the UN Declarations from the 1970s. Accord-ing to Quinn and Arstein-Kerslake, this shift involves a fundamental reconceptualisation ofwhat it means to be human, a rejection of the myth of the ‘masterless man freely choosing his/her own conception of the good and wandering purposively in an anomic no-man’s land’, andin its place ‘a frank acknowledgement of shared personhood and of the myriad or supports –formal and informal – that we all rely on to help us forge our own pathways and the criticalimportance of participation and the ethic of belonging that it instils’ (2012: 37). From thisperspective, the CRPD is not merely a disability Convention, but is ‘the latest iteration of acosmopolitan theory of justice that happens to be grounded on disability’ (ibid.: 38).

Implicit in the CRPD is an understanding by those who framed it that how we under-stand disability transforms how we respond to it, that questions of epistemology and ontologyultimately influence the material conditions and relationships of power that shape lives. TheCRPD’s epistemological and normative break with what came before is signalled in both theconsiderable length of its Preamble – whose function is to assist in treaty interpretation and togive ‘traction to norm development and evolution’ (Lord in Bantekas et al. 2018: 7) – andprovisions requiring states parties to engage in ‘awareness raising’.

Article 8 of the CRPD obliges states parties to the Convention to adopt immediate,effective and appropriate measures to raise awareness throughout society – ‘including at thefamily level’ – regarding persons with disabilities, to combat stereotypes, ‘promote awarenessof the capabilities and contributions of persons with disabilities’ and ‘foster respect for therights and dignity of persons with disabilities’. This provision is the first of its kind to beincluded in an international human rights instrument. It is an example of the shift towardsrecognition of collective rights for minority groups. It signals that changing the way societiesthink and talk about disability is instrumental to realising its goals (Bariffi in Bantekas et al.2018). So much will seem self-evident to disability scholars and activists, but what is not self-evident is the extent to which law – and in particular international human rights law – candrive these changes in societal perceptions and understanding of disability.

Key elements of the UN Convention on the Rights of Persons with Disabilities

The purpose of the CRPD is ‘to promote, protect and ensure the full and equal enjoymentof all human rights and fundamental freedoms by all persons with disabilities, and to promoterespect for their inherent dignity’ (Article 1). It consists of 50 separate articles. Articles 5 to 30set out the substantive rights protected by the Convention, while the remaining provisionsestablish mechanisms for implementation and monitoring.

Officially speaking, the Convention does not establish any new rights, but rather ‘clarifiesthe obligations and legal duties of States to respect and ensure the equal enjoyment of allhuman rights by all persons with disabilities’ (e.g. the UN Office of the High Commissionerfor Human Rights and the Inter-Parliamentary Union 2007: 5). Many of the articles have


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titles that draw on those used by the UDHR, the ICCPR and the ICESCR, including theright to equality and non-discrimination (Article 5), equal recognition before the law (Article12), the right to life (Article 10), liberty and security of the person (Article 14), freedom fromtorture, or cruel, inhuman and degrading treatment (Article 15), liberty of movement andnationality (Article 18), freedom of expression and opinion (Article 21), respect for privacy(Article 22), respect for home and the family (Article 23), the right to education (Article 24)and health (Article 25), work and employment (Article 27), participation in political andpublic life (Article 29) and participation in cultural life, recreation, leisure and sport (Article30). Most rights include provisions to the effect that states parties must take effective or allnecessary measures to ensure their enjoyment ‘on an equal basis with others’. Waddington(2011: 436) describes the themes of equality and non-discrimination as running ‘through theConvention like a red thread’. The benchmark against which successful implementation ofthe CRPD will be measured is the extent to which disabled people really do enjoy equalrights in comparison with others in their society.

Many substantive rights spell out in some detail the necessary steps to make equalenjoyment of previously recognised rights a reality. For example, the right to education iscontained in several earlier human rights instruments (Article 26 of the UDHR, Article 13of the ICESCR, Article 23 of the CRC and Article 2 of the ECHR). Article 24 of theCRPD spells out in considerable detail the measures that would be required to realise thisfor disabled children, from rights to ‘reasonable accommodation’ and support, to facilitatingthe learning of Braille, other forms of augmentative and alternative communication, to signlanguage, promoting the ‘linguistic identify of the deaf community’, and provisions con-cerning the training of teachers. The right to respect for home and the family, a civil andpolitical rights stalwart (Article 12 of the UDHR, Article 17 of the ICCPR, Article 8 ofthe ECHR and Article 16 of the CRC), uniquely specifies in Article 23 of the CRPD that‘Persons with disabilities, including children, [shall] retain their fertility on an equal basis withothers’ and that ‘States Parties shall render appropriate assistance to persons with disabilities inthe performance of their child-rearing responsibilities’. For the first time in international humanrights law, a right to ‘reasonable accommodation’ was explicitly spelled out, in the equality andnon-discrimination provision of Article 5 of the CRPD, and defined in Article 2.

Despite the ‘official fiction’ that the CRPD creates no new rights, it does contain articlesbearing entirely novel titles, and introduces many innovative measures and mechanisms(Kayess and French 2008: 32). For example, articles concerning accessibility (Article 9), livingindependently and being included in the community (Article 19), personal mobility (Article20), habilitation and rehabilitation (Article 26), speak to specific concerns for disabled people.Whether these are ‘new rights’, or simply rights that are so securely (and thereby invisibly)enjoyed by most non-disabled people as not to attract specific protection in human rightstreaties, is a matter for debate. Other ‘new’ rights emerged as more detailed specifications ofpreviously recognised rights. For example, Article 13 on the right to access to justice emergedfrom the negotiations of Article 12, on the right to equal recognition before the law. Thesparse text of Article 17 – on protecting the physical and mental integrity of the person – wasalready recognised in human rights jurisprudence, but emerged as a stand-alone provision inthe CRPD.

Implementation and monitoring of the Convention

The CRPD introduces an innovative framework for implementation and monitoring of theConvention. States parties must designate a ‘focal point’ within government to oversee


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implementation of the Convention (Article 33). Article 4 obliges states to adopt all appropriatelegislative, administrative and other measures to implement the CRPD, and to modify orabolish existing laws, regulations, customs and practices that constitute discrimination againstpersons with disabilities. States must also designate or establish an ‘independent mechanism’ to‘to promote, protect and monitor implementation of the present Convention’ (Article 33).This role is often undertaken by national human rights institutions (de Beco 2011).

The CRPD requires states to ‘collect appropriate information, including statistical andresearch data, to enable them to formulate and implement policies to give effect to the presentConvention’ (Article 31). Statistical data is a ‘potent tool’ for undertaking comparative analysesof (un)equal treatment under discrimination law (Fredman 2011: 183).

Article 34 of the CRPD established the Committee on the Rights of Persons with Dis-abilities (CRPD Committee) to oversee and monitor the Convention. Members are elected bystates parties, who must consider, inter alia, equitable geographical distribution, representationof ‘different forms of civilization’, balanced gender representation and ‘participation of expertswith disabilities’. Of the 18 independent experts elected in 2016 only one was not a disabledperson (Löve et al. 2017). The CRPD Committee (2017) expressed concern that only onewoman was elected.

States that have ratified the Convention must submit reports to the Committee at least everyfour years (Article 35). The Committee considers reports – possibly requesting further informa-tion – and makes observations and recommendations to individual states on the implementationof the Convention (Article 36). Although not specifically provided for in the Convention, civilsociety organisations frequently submit ‘shadow reports’ on the implementation of the Con-vention in their country, which inform the work of the Committee. Where states have alsoratified the Optional Protocol to the CRPD (UN 2006), the Committee can consider individualcomplaints about human rights violations by states.

Legal status and influence

For states that have signed and ratified the CRPD, its status is binding in international law –

not ‘soft law’ as some political figures have mistakenly suggested (Joint Committee onHuman Rights 2012). In the event that governments do not promote, protect and ensure therights contained in the CRPD for disabled people, they are in breach of their internationallegal obligations. However, one of the key difficulties for international human rights law isthe question of who, if anyone, will enforce a treaty or take action if violations occur. This isprecisely why provisions for the implementation and monitoring of human rights Conventionsare so vital.

The extent to which individuals can take legal action to enforce, or vindicate, their rightsunder the CRPD differs between states. In ‘monist’ states, international Conventions becomepart of domestic law once it is ratified, meaning that domestic courts can consider the provisionsof the CRPD and may even strike down national legislation if it conflicts with a treaty obliga-tion. In contrast, in ‘dualist’ legal systems, like that of the UK, a ratified treaty does not becomean enforceable part of domestic law unless parliament specifically passes legislation to this effect(as, for example, it did with the ECHR under the Human Rights Act 1998). The status of theCRPD in the domestic courts of dualist states is persuasive where domestic law is ambiguous orunsettled – it is not binding in law. Yet a recent comparative study of 13 jurisdictions found thatthe domestic courts of both monist and dualist states are increasingly considering and interpretingthe CRPD in order to fill gaps in domestic law, and to update it, even if not always quite in linewith the intentions of its drafters (Lawson and Waddington 2018).


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Key themes from the CRPD

‘Nothing about us without us’

It has become a truism that the CRPD, more than any other human rights treaty that camebefore it, embodies the spirit of the disability rights slogan ‘nothing about us without us’.Klug (2000: 101) has described the UDHR as an ‘élitist enterprise’ that was not necessarilydrafted by victims of repressive regimes themselves. Yet disabled people played a central rolein the development of the CRPD. Kanter states that ‘never before in the history of the UNwere the subjects of a treaty invited to play such a prominent role in the drafting process’(2015: 8); she suggests that this has become a model for future human rights treaties.

The Ad Hoc Committee that negotiated the Convention eventually included over 400representatives of civil society organisations from over 40 countries (Kanter 2006–2007;McKay 2006–2007). Many disability organisations worked together as the International Dis-ability Caucus (IDC) in order to develop and adopt a position of ‘unity’ among the diverseorganisations and groups represented (Reina 2008). A working group was established in 2003to develop a draft Convention text for future negotiations. Following successful lobbying bydisability organisations, it included prominent disability scholars and activists such as TinaMinkowitz, Gerard Quinn and Theresia Degener.

Lord recollects that during the first Ad Hoc Committee meeting in 2002:

the gallery space of the chosen conference room was inaccessible for people usingwheelchairs. A move to a larger conference room (now the designated conferenceroom for the remainder of the process) with equally inaccessible space for observers,forced disability activists to find space among delegates on the actual floor of thecommittee itself. This conferred a major advantage on participant NGOs, however,as they found themselves dispersed alongside delegates and IGO representatives.

(2004: 96)

The official records of the treaty negotiations (UN Enable) and accounts of participants(Kanter 2015; McKay 2006–2007; Dhanda 2006–2007; Minkowitz 2006; Reina 2008) revealthe very significant role played by civil society representatives in the development of the textof the CRPD. It has been suggested that as much as 80 per cent of the final text of theConvention came from the IDC (Kanter 2015, citing the Landmine Survivors Network).

The CRPD is a landmark achievement for inclusive lawmaking – both for disability advocatesand the human rights community. It stands in stark contrast to the minimal inclusion of disabledpeople in the development of many human rights instruments that purport to serve them – fromthe MI Principles in the 1990s, to the recent outcry over the absence of ‘meaningful consultation’with disability organisations by the Council of Europe’s Committee on Bioethics in developing abinding protocol on involuntary treatment and placement of ‘persons with mental disorders’(European Disability Forum 2018; CRPD Committee 2018). The CRPD has irrevocably shiftedthe benchmarks of legitimacy for the development of laws affecting disabled people. It hasenshrined this principle into the treaty itself: Article 4(3) of the CRPD requires states parties to‘closely consult with and actively involve persons with disabilities, including children with dis-abilities, through their representative organizations’. The CRPD Committee (2018) has recentlyadopted a General Comment on the participation of persons with disabilities in the implementationand monitoring of the Convention, elaborating a definition of ‘representative organisations’ thatprivileges user-led organisations and an approach to disability advocacy founded on the CRPD.


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The remarkable achievement of the CRPD also casts an uncomfortable spotlight on diffi-cult questions of representation in disability politics and advocacy. Reina (2008) describeshow a position of unity for negotiations sometimes involved learning to live with unsolvedproblems and ambiguity – ‘an inevitable consequence of being simultaneously different andunified’. Lord (2004) notes that many of the most influential members of the IDC did notsatisfy the ultimate ‘legitimacy test’ of being grassroots membership organisations, and that allmembers of the core group of disabled person’s organisations – the International DisabilityAlliance – were from the global north. Some groups of people directly affected by theConvention – most notably people with dementia – appear to have had little representationin the negotiations. And some commentators have questioned whether the strong positionadvocated for by the IDC on legal capacity and mental health detention reflects the views ofmost mental health service users (ibid.; Plumb in Spandler et al. 2015). There is, certainly, adanger that asking such difficult questions risks strengthening and legitimating existing practicesthat the Convention seeks to address, but it is also dangerous to leave unaddressed matters of‘representational over-reach’ and questions about hierarchies of class, education, socially valuedidentity and access (Jones and Kelly in Spandler et al. 2015: 54).

A human rights model of disability?

A pivotal question for disability advocates was whether it would adopt a medical model, asocial model or some other approach to disability. The CRPD negotiations considered wide-ranging ‘definitions’ of disability, with many states proposing medical model approaches thatwere resisted by disabled persons’ organisations. Ultimately, the drafters of the Conventioncould not agree upon a ‘definition’ of disability, concerned that it might unwittingly (ordeliberately) exclude some groups (Schulze 2010; Kakoullis and Ikehara in Bantekas et al.2018). Instead, Article 1 of the CRPD contains an open-ended description, rather than adefinition, of the treaty’s target population:

Persons with disabilities include those who have long-term physical, mental, intel-lectual or sensory impairments which in interaction with various barriers may hindertheir full and effective participation in society on an equal basis with others.

This description clearly foregrounds a ‘social understanding of disability’ (Traustadóttir 2009:16), but the extent to which it reflects any particular model of disability is a matter for debate.Kayess and French (2008: 7) write that a ‘populist’ conceptualisation of the social model ofdisability was a primary influence on the development of the CRPD, with a tendency towardsa ‘radical social constructionist view of disability, rather than from its contemporary expressionas a critical theory of disability’. Stein (2007) argues that the CRPD as a whole combinescomponents of the social model of disability, with the human right to development andNussbaum’s version of the capabilities approach, filtered through a disability rights perspective.Degener (2017), the outgoing chair of the CRPD Committee, suggests that the Conventionoffers an alternative to both the medical model and the social model of disability – a ‘humanrights model’ – but notes that most states parties to the Convention still adhere to a traditionalmedical model understanding of disability.

The CRPD’s broad description of the target population is already reshaping states parties’approach to disability (Kakoullis and Ikehara in Bantekas et al. 2018; Lawson and Waddington2018). For example, in 2013 the Court of Justice of the European Union adopted the CRPD’sapproach to disability, reversing an earlier medical model definition relied upon by the EU


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(HK Danmark v. Dansk almennyttigt Boligselskab, 2013). The potentially far-reaching con-sequences of this approach are exemplified by its finding in Karsten Kaltoft v. the Municipality of

Billund (2014) that morbid obesity may fall within this definition of disability, and therebyqualify for protection against discrimination under EU law. Yet not all those who might beconsidered to fall within target population of the Convention will necessarily identify as ‘dis-abled’. For example, several prominent users and survivors of psychiatry have contended thatthe social model of disability is not an adequate explanatory framework for their experiences(Spandler et al. 2015).

From vulnerable to empowered?

Article 3 of the CRPD establishes ‘general principles’ for the Convention. First among these is‘Respect for inherent dignity, individual autonomy including the freedom to make one’s ownchoices, and independence of persons’. Other principles reference equality, non-discrimination,respect for diversity, participation and inclusion, accessibility and respect for the ‘evolvingcapacities of children with disabilities’, but ‘protection’ does not feature on this list. Thelanguage of ‘vulnerability’ does not feature in the Convention, and was actively resisted byDPOs during the drafting of Article 16 of the CRPD, concerned with exploitation andabuse (Schulze 2010; Keeling in Bantekas et al. 2018). This contrasts with characterisationsof disabled people as inherently or especially vulnerable in feminist literature (e.g. Mackenzie etal. 2014; Fineman and Grear 2013) and in wider society.

Ideological conflicts between a view of disabled people as vulnerable and requiring pro-tection – including through limits on rights to ‘freedom to make one’s own choices’ – and aview of such protective interventions as themselves part of the problem that the CRPDshould address, recurred throughout the negotiations of the Convention. There were heateddebates on whether the CRPD should prohibit all forms of mental health detention, treatmentwithout consent and mechanisms restricting legal capacity and permitting ‘substitute deci-sions’ by guardians or others. During the negotiations on the drafting of Article 15, the IDCmaintained that forced treatment and institutionalisation were forms of ‘torture’ that theCRPD should explicitly prohibit, an approach that was resisted by states parties (Fennell inBantekas et al. 2018). It was certainly the intention of many disability advocates that theConvention should prohibit all forms of mental health detention and forced treatment, andall forms of guardianship or disability-related restrictions on legal capacity – including thosepremised on ‘mental incapacity’ (Minkowitz 2006; Dhanda 2006–2007).

The CRPD Committee (2014, 2015) interprets the Convention as prohibiting all forms ofmental health detention, compulsory treatment, restrictions on legal capacity and substitutedecision-making. The status of the Committee’s interpretation of the Convention is author-itative, but it is not legally binding upon states; few would have ratified the Convention ifthey shared this interpretation. There has been a backlash against the Committee’s position,from clinicians in particular (e.g. Freeman et al. 2015; Appelbaum 2016). Some prominentusers and survivors of psychiatry have also expressed concern about this absolutist position(Plumb in Spandler et al. 2015; Jones and Shattell 2014; Rose in Bhugra et al. 2017: 794).The question of whether the Convention does in fact prohibit all forms of mental healthdetention, treatment without consent and restrictions on legal capacity is a matter ofongoing discussion and debate (Bantekas et al. 2018).

Radical interpretations of the Convention, which divorce legal agency and the exercise ofrights from the concepts of ‘mental capacity’ and ‘mental disorder’, have been described as‘the most revolutionary of the new norms articulated in the CRPD (Minkowitz 2006: 408).


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It is in this arena that the intellectual battles for a new paradigm are at their most contestedand complex; there is insufficient space in this chapter to do justice to the wide-ranging issuesand considerations. However, it is certainly an area that is in much need of input fromdisability and Mad Studies scholarship, user and survivor researchers, engagement with grassrootsdisability and user and survivor organisations, and – perhaps most importantly – those whoare affected but who are not engaged in disability activism. We must take these importantdiscussions and debates outside the elite arenas of legal, ethical and clinical scholarship.

Paradoxes of rights

To summarise, then, human rights as they developed in the second half of the twentiethcentury only very gradually recognised the specific situation of disabled people, despitegross and widespread human rights violations perpetrated against the world’s ‘fastest grow-ing minority’ (Kanter 2015: 21). The CRPD is a landmark achievement for disabilityadvocacy and human rights. It represents an inflection point in our understanding of whatit means to be a bearer of rights, and the role of states and the global community in pro-moting, protecting and ensuring those rights. The CRPD is widely described as embodyinga paradigm shift in approaches to disability and to human rights, but this paradigm shift isfar from achieved. Intellectual battles continue to rage, and as Fennell (in Bantekas et al.2018) has noted, it operates in tandem with an ‘old’ paradigm of disability and humanrights at the level of the Council of Europe, several UN bodies and national law. Nocountry yet complies with all the provisions of the CRPD, and many countries face aconflict of laws in deciding whether to apply the human rights norms of the CRPD orother legal instruments, such as the ECHR, which continue to be based on conflictingnorms and obligations.

To suggest that this signals failure is to misunderstand human rights law, and indeed thenature of ‘revolutions’ in paradigms of thought. No human rights instrument was ever bornwith fully fledged jurisprudence, and human rights norms continue to develop and evolvethroughout the lifetime of a treaty. There simply is no human rights treaty that has been fullyimplemented, or any country that fully complies with all human rights law. The criticalquestion for the CRPD is what compliance could actually look like for some of its moreradical norms and interpretations, and in this respect there is ample scope for further studyand inclusive discussion and debate. That many of these new norms are resisted and contestedby governments, law reform and professional bodies at the very least signals that they arefinally being required to justify positions that have previously been regarded as unassailableand unquestionable.

The CRPD, like any other human rights treaty, has the potential to be differentiallyinterpreted and (mis)applied. As Quinn states:

the text alone does not guarantee that its values will be transposed into the worldviewof policy and law-makers and that there will always be textual toeholds to be found inthe Convention – in any convention – that can potentially allow States to temporisethe profound reforms that its underlying philosophy demands. This is no more thanwhat the Legal Realists have taught us several decades ago.

(2009: 2017)

Mladenov (2012) anticipated ongoing struggles over the CRPD’s meaning in the terrains ofnational and international lawmaking, policy planning, implementation and monitoring, and


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contends that politically engaged communities are a crucial condition for the realisation ofthe Convention’s potential.

The wider field of critical human rights scholarship has observed that ‘rights’-based strategiescan differentially empower and reinforce existing inequalities (Brown 2002; Rose 1985).Others express a broader scepticism about the power of law to achieve social transformation(Rosenberg 2008). Prominent disability activists and scholars have questioned the efficacy of‘the drift towards a rights-based approach that now dominates disability politics’ (Oliver andBarnes 2006). These critical insights temper our expectations of the CRPD, and keep alive theimportance of disability politics and activism alongside legal strategies. Yet without legal stra-tegies, the law would not simply evaporate, but instead would continue to operate on andreinforce the norms and understandings that permit and legitimate oppression, isolation,exclusion and inequality. The CRPD is fundamental to unpicking them.

Note

1 Similar text can be found in the Preamble to the European Convention on Human Rights (Council ofEurope, 1950).

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Binding international Conventions - Organization of American States

‘Inter-American Convention on the Elimination of all forms of Discrimination against Persons with Dis-abilities’, opened for signature on 7 June 1999, AG/RES. 1608 (XXIX-O/99).

United Nations Conventions

‘International Covenant on Civil and Political Rights’, opened for signatures 6 December 1966, 999United Nations Treaty Series 14668 (ICCPR)

‘International Covenant on Economic, Social and Cultural Rights’, opened for signatures 16 December1966, 999 United Nations Treaty Series 2 (ICESCR)

‘Convention on the Elimination of All Forms of Discrimination against Women’, opened for signatures 18December 1979, 1249 United Nations Treaty Series 13 (CEDAW)

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General comment No. 7 (2018) on the participation of persons with disabilities, including children withdisabilities, through their representative organisations, in the implementation and monitoring of theConvention. Adopted on 9 November 2018. UN Doc CRPD/C/GC/7.

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Cases

HK Danmark v. Dansk almennyttigt Boligselskab EUECJ C-335/11 (11 April 2013)Karsten Kaltoft v. Municipality of Billund EUECJ C-354/13 (18 December 2014)


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7

INVALIDATING EMOTIONS INTHE NON-DISABLED IMAGINARY

Fear, pity and disgust

Bill Hughes

Introduction

For Sartre (1971), emotion springs from a transformation of the subject’s perspective on theworld. There is a kind of ‘magic’ in this transformation because the subject is spontaneouslyaltering his or her attitude in the face of objective events. Emotion is an embodied experi-ence. It involves physiological sensations like the pounding heart associated with love or fear,or the nausea – even retching – associated with disgust. This interpretation of emotionsembeds them in corporeal being in the world but the element of magical transformation suggeststhat, at the same time, emotion may be either immersion in positivity or an attempt to escapefrom an alienating, objective, engulfing presence. The link between emotion as an embodiedperspective and as a mechanism for disengagement with certain aspects of the world has advan-tages in understanding the emotional relationships between disabled and non-disabled actors.In the phenomenological tradition emotions are the means by which consciousness appre-hends objects and attaches value (or disvalue) to them. They may be a source of – pre-reflective – judgement or they may also be based on long-held grievances. With respect tothe basic aversive emotions (Kolnai 2004) – fear, hatred and disgust – there is little ambiguityabout the value associated with the objects and persons that inspire and arouse the sense ofabhorrence and antipathy that accompanies these feelings. There may be ‘magic’ in the socialtransformation that these emotions generate but it is profoundly negative in nature anddisturbingly violent and validating in its consequences.

Pity cleaves populations by attributing suffering and wretchedness to some members of thecommunity – a class of moral outsiders that includes disabled people – who become good to begood to. For example, the Christian Middle Ages institutionalised this moral cleavage in asystem of charity that transformed disabled people into instruments of redemption for non-disabled folk. It also gave disabled people a clearly defined status in the medieval moraleconomy as objects of charity. Disability became an illustration of the cruel fates of Christiantheodicy, of the suffering and evil that God permitted, because of His infinite goodness.

Some forms of social inequality – such as the caste system, for example – institutionalisesupremacist notions of disgust and contempt. Class distance, in modernity, is maintained, at a

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moral level, by a continuum of revulsion and respectability (Skeggs 2004) and by attributionsof social abjection to marginalised groups including disabled people (Tyler 2013). A ‘criticalsocial ontology for disability studies’ (Hughes 2007) that articulates the role of the economyof affects (Ahmed 2004b, 2004c) and the social distribution of discomforting and negativeemotions, like fear, pity and disgust in the invalidation of disabled people’s lives, is playing agrowing role in disability scholarship (Soldatic and Pini 2009; Soldatic and Meekosha 2012;Schweik 2009). Negative emotions about disabled people populate the non-disabled ima-ginary and sustain the hegemony of ableist sensibilities (Campbell 2010)

This chapter owes its wider general frame of reference to what is sometimes described as ‘the‘affective turn’ (Clough and Halley 2007), a process that follows from the view that accounts ofemotion cannot be reduced to individual feeling but should – following feminist and post-structuralist arguments – be explored in their economic, social, historical and cultural context.

In sociology, the turn to emotions has followed logically from the growth in body studiesand the recognition of the intensely somatic nature of contemporary society. Bruno Latour(2004) suggests that we should think about bodies, not as things or reified objects, but asprocess, in terms of ‘what a body can do’, its reactions, impacts, capacities and practices, and,most fundamentally, how it affects and is affected. One is reminded of Bergson’s vitalism, ofhis view that the body is an ‘an instrument of action and of action only’, from which hededuces that ‘in no sense, under no aspect does it [i.e. the body] serve to prepare, far lessexplain a representation’ (1988: 225). From this perspective, escape from the body as object islegitimated but there is no escaping recognition of the currents of emotion that circulateembodied social lives like weather systems bombarding our experiences with wind, rain andsun. Emotions are, of course, bodily forms of knowing – corporeal moments of sensation.The affects are en-fleshed, even when they are shared and circulating in groups and commu-nities where they may come out as mob sentiments.

This chapter is concerned with the ways in which circulating constellations of negativeemotion both inform the non-disabled imaginary and invalidate disabled bodies. Ahmed(2004a) offers insight into the social nature of emotion. This idea surfaces at the confluenceof a number of sociological questions, including how emotions are lived and experiencedthrough bodies, how cultural politics implicate the affects in the stratification of society, andhow the processes of othering and invalidation of difference rest upon a psychic bedrockmade from moral divisiveness, intolerance and deeply ingrained prejudice. According toAhmed, ‘it is through emotions, or how we respond to objects and others that surfaces andboundaries are made; the “I” and the “we” are shaped by and even take the shape of contactwith others’ (ibid.: 10). Object and other can be perceived as problematic or ‘viscid’, to useAhmed’s glutinous, existentialist term. The attribution by dominant actors of a slimy – foul,muddy, turbid, not to mention pitiful – nature to subordinate subjects interpolates injusticeinto emotional relations. The moral, invalidating backbone of the non-disabled imaginary isconstructed out of these emotions – out of fear, pity and disgust. Discrimination, and theviolence against disabled people that may be legitimated by it, have a strong foothold inemotional antipathy that can be stoked by negative social representations.

Following Thomas (1999), disability studies began to explore the issue of ‘psycho-emotionaldisablism’ (Reeve 2004; 2006). In addition to structural disablism, including the ubiquitousbarriers to (full) social participation, disabled people run a ‘socially engendered’ gauntlet ofdisparagement that undermines their ‘psycho-emotional wellbeing’ (Thomas 1999: 60). In thequotidian spaces of everyday life, disabled people experience attacks on their existential security.The impact of discrimination and exclusion is augmented by a disablist interaction order inwhich people with impairments are patronised, ignored, abused and subjected to the


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subcutaneous violence of the intrusive, demeaning and disturbing non-disabled gaze (Garland-Thomson 2009). Undermined as mothers, fathers, workers, lovers and in a host of othercapacities disability is a life lived before a looking glass that is cracked and distorted by thevandalism of normality.

Below, I examine the three emotions – fear, pity and disgust – that I think are the major –though not exclusive – building blocks of the emotional infrastructure of ableism. It is theseemotions that settle as sediment in the non-disabled imaginary. They contribute to the socialdistance between disabled and non-disabled people. The tendency in modernity to consigndisabled people to segregated spaces or to try to make them identical to non-disabled people,through correction, is an expression of the civilising process (Elias 2000). In modernity, thethreshold of repugnance narrows and attitudes to bodily and intellectual difference – parti-cularly bodies and minds that do not conform to the hygienic norms of somatic control andappearance – harden into aversive emotions like fear and disgust and into the conviction thatimpairment is a tragedy (Oliver 1990) whose ‘victims’ deserve benefaction and favour. Non-disabled people are disposed towards disabled people principally through these three emotions.They form an economy of affects that position disabled people in morally tenuous sociallandscapes where it is legitimate to be both violent and charitable towards them.

Fear

Dread (or angest in Danish), in its philosophical sense, particularly in Kierkegaard’s work,refers principally to the existential anxiety that is produced by one’s realisation that freedomand choice are part of human destiny. Kierkegaard (1957), through the mouth of his char-acter/pseudonym Vigilius Haufniensis in the Concept of Dread describes this subjective con-dition, compellingly, as ‘the dizziness of freedom’. Dread is also to be understood in terms ofthe recognition of one’s identity as a mortal, vulnerable, fleshy creature, at the juncture, as itwere, between freedom and necessity. In twentieth-century existentialism, angst and anguishare used more regularly to refer to the ontological insecurity that Kierkegaard described.‘Angst’, philologists argue, has its roots in the Latin angar meaning ‘choking’ and anguista

meaning ‘tightness’. These forms of bodily comportment are the corporeal expression of fearand disgust and, in particular, the way in which these emotions combine as we experience orponder the harsh inevitable realities of suffering, loss, pain and death. In the end, it is the fearof ‘nothingness’ and whatever suggests this possibility to us that makes us choke and feelconstricted, heavy with the uncertainties of human finitude. A negative and aversive reactionto the presence of disability is, in part, fear about the precariousness of one’s own being andthe vulnerabilities of our ephemeral flesh. For Kierkegaard, fear is ‘of’ something in the worldand anguish is horror of the self as freedom in the face of nothingness. The misrecognition anddisrespect – not to mention segregation and oppression – that disabled people suffer at the handsof their non-disabled counterparts is a form of violence bred from our fear of and anguish aboutour alienation from the human condition whereby being human is simultaneously a facet of selfand other. The feeling of anguish with respect to others is indivisible from the feeling of disgustfor oneself but in an ableist culture these feelings become separated. The body beautiful creates itseugenic opposite and proceeds to tyrannise the forms of physical and mental difference that areproducts of its own existential insecurity.

The critique of modernity that we find in the work of philosophers like Kierkegaard and(especially) Nietzsche pivots on the view that modern persons are in denial when it comes tofacing up to their own vulnerability. They fail to recognise, let alone celebrate, pain, loss anddeath. In these early powerful critiques of modernity, we hear of a culture that is empty of


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passion and burdened with sterile objectivity (Hughes 1996). The blight of objectivityempties life of meaning and purpose. It replaces the candour of subjective culture with fearand denial about our carnal frailties. There are real losers in this process. In particular, onemight cite those who come to represent loss, pain, suffering, disorder and death; those whocome to be associated with or ‘in-themselves’ designated as abject objects of fear. Stigma-tised and marginalised populations are readily mobilised around the scapegoating practicesinduced by fear. In classical culture, the scapegoat or pharmakos may be either a criminal ora disabled person (Quarmby 2011). Either is disposable – ripe for sacrifice – to a commu-nity experiencing crisis or catastrophe. Fiedler argued that the ‘true freak’ will ‘stir bothsupernatural terror and natural sympathy’ (1978: 24). Encounters with the monstrous areemotionally powerful. They challenge the stable view of embodied self that is characteristicof non-disabled identity. Such encounters push at the walls of the architecture of ableism.In the context of such an encounter, non-disabled persons are most likely to attempt toresolve the element of fear manifest in the challenge of difference by erasure, by puttingclear emotional, physical and social distance between themselves and the source of this kindof visceral identity shock. This can be achieved by an act of ‘reclassification’ that dehuma-nises and objectifies the aberrant body. The sense of ‘sympathy’ that Fiedler describes maybe treated as a confirmation of one’s own humanity or may work itself out in a good deedor a philanthropic act, which is, as we will see below, another mechanism for creatingsocial distance between disabled and non-disabled people.

Fear implies a threat. We need to clarify in what way disability constitutes a threat.Margrit Shildrick (2005) is helpful in this respect. She argues for a ‘specifically deconstruc-tive approach’ that ‘seeks to uncover the other as an interior attribute of the embodied self’(ibid.: 755). Psychoanalytical and postmodernist ideas inform this approach to disability andits history. The approach also has affinities with the humanities tradition in the UnitedStates, particularly its predilection to expose the ‘social phantasms projected upon the dis-abled subject in history (Mitchell and Snyder 1997: 3). Shildrick searches for the ‘otherwithin the same’, the self that denies its own frailty and precariousness and projects it ontoothers who become the anomalous, the monstrous, the defective, the strange, the alien.We make hideous objects out of the very elements of self that we are too afraid of and toodisgusted by to recognise, let alone celebrate. In this respect, modernity – with its penchantfor solid separation and clear distinction – is particularly precarious (Hughes 2009). Shildrickreinforces this when she argues:

Given the explicit privileging of wholeness, independence and integrity demandedof the able-bodied subject, the cultural imaginary is highly invested in fantasies of aninvulnerable body. Yet, in the face of disability that threatens always to claim itsidentity in the self-same, such fantasies generate a normative anxiety that cannot beallayed.

(2005: 757)

The ‘threat’ of disability in the contemporary world is, according to Shildrick, considerable: ‘Itis the other that not only disturbs normative expectations but destabilizes self-identity’ (ibid.).The capacity of the disabled body to disturb individuals and cultures alike is, according toShildrick, universal because it (disability) never fully submits to being either different oridentical. She regards the anxiety that underpins disability as transhistorical because ancientsand moderns, scientists and theologians share the doubt about a body that could be naturalor not, human or not, unnatural or not, non-human or not.


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Such a psychoanalytic deliberation fits well with the age of anxiety but seems too inclusive,even essentialist, to capture the emotional differences and complexities that cut through timeand culture. It also seems – ironically – a little too much in tune with the modernist view inwhich the best of all possible worlds is one in which everything is clean, proper, separate anddistinct. Shildrick’s psychic reductionism brings disablism as close to the home of non-disabilityas it can get, placing it firmly in the delusion of perfection and the disavowals of frailty thatcharacterise non-disabled life, while human timidity in the face of its own precariousness is asgood at explaining everything in general as it is at clarifying nothing in particular. The threat ofdisability is, in modernity, a threat to the comfortable settlements of civility, to absurdly narrowableist notions about proper conduct and norms of bodily comportment (Hughes 2011).

Fear encourages ‘flight or fight’. It has manifest itself in the segregation of disability, itsenclosure behind high walls; the anthropophagic strategy of early to mid-modernity whichput impairment out of sight and out of mind. The de-institutionalisation of disability, thedemand for inclusion and the appearance of impairment in the contemporary world as a‘spectacle’ for non-disabled persons to psychically consider and accommodate has recast therelationship between disability and non-disability (Linton 1998). The worrying phenomenonof disability hate crime – both cyber and corporeal – (see, for example, Ralph et al. 2016;Roulstone and Mason-Bish 2013 and Clement et al. 2011) might be explained – in socio-emotional terms – as a manifestation of fear of impairment, resentment and hatred actualisedas virtual or visceral violence against disabled people.

Pity

Although philanthropy has been around since Prometheus gave humanity the gift of fire,post-Enlightenment approaches to disability depend quite strongly on the mobilisation of theemotions of pity and compassion by non-disabled agents. From this perspective, disabledpeople are cast as ‘unfortunates’, existing (and in most cases subsisting) in the dark throes ofgreat suffering. In classical communities, disabled people were disposable, killed at birth andridiculed in polity and civil society (Garland 2010). Neither pity nor compassion was on theagenda. The Christian system of charity institutionalised pity as the mode of emotionalresponse to disabled people who were transformed by the See of Rome into mediums ofgrace and suffering through their association in Scripture with Christ’s miraculous terrestrialmission. It became the moral and religious duty of decent Christian people to participate inacts of mercy and the provision of alms. Disabled people were transformed into a parasiteclass of deserving mendicants, their agency expropriated by a system of donation that openedthe gates of Heaven to their non-disabled counterparts. Alms and acts of mercy offered non-disabled people the ultimate bonanza of salvation. Disabled people became the means to thisend; the emotional and economic burdens borne by wealth and piety, nobility and church astheir privileged constituents engineered their passages to redemption on the back of coinstossed to disabled beggars. Reformation marked the secularisation of this system as Protestantelites privileged faith over charity, but disability did not escape the vice of pity. It remained ameans by which non-disabled people could practise munificence and feel good aboutthemselves. In the wake of the ‘philanthropic bonanza’ that spread across Britain from the1780s disabled people became the objects of the pathos of the charitable gaze; a role that theystill play today (Borsay 2005: 142).

Rousseau argued that sympathy for others (pitie) is a feature of man in the state of natureand that it is a characteristic that tempers and moralises the instinct of self-preservation.However, in the real world (amour propre) people are driven to compare themselves with


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others and, in this context, the drive to seek domination over others transforms pity from astate of natural sympathy and compassion into a base symptom of social inequality. Thus, pityis ‘accompanied by a certain kind of contempt’ (Miller 1997: 25). Rousseau’s abstract analysisof pity can be comfortably applied to the history of the emotion as it shaped the dialecticalrelationship between disabled and non-disabled people in the wake of the collapse of theRoman Empire and the rise of Christendom.

The object of compassion and pity in the real world is always a victim, the other whoseshoes one does not want to be in, the one who invokes the pathos of fate; ‘there but forfortune go I’; the one whose wretchedness and social invalidity is redemption and validationfor the normate community. The charitable attachment to the disabled other is saturated withselfishness and hubris. It sustains one’s sense of ontological security and wholeness at the

expense of the other who is relegated to inescapable misfortune. Charitable giving ‘demon-strates the persistence of public virtue’ and ‘confirms to individual donors their possession ofthat virtue by distinguishing them from both takers and the invalidated’ (Longmore 1997:136). In his study of American telethons, Longmore notes that ‘although they ostensibly seekthe physical repair of those socially invalidated by disability’ televised charitable bashes are –

no more, no less – ‘rituals of moral restoration for nondisabled communicants’ (ibid.: 14).Pity is a hierarchising emotion. A sense of superiority is at work in those who feel it.

Inferiority is the projected status of those targeted by it. Even if one is tempted, as many havebeen, to criticise or even laugh off Rousseau’s anthropology, one cannot disentangle pityfrom the social and emotional construction of inequality. Pity is constitutive of the demar-cation of populations into privileged and suffering. Modernity reinvents this demarcation.The medical categories of normal and pathological reprise a binary distinction that still callsforth a world split between the fortunate and the misfortunate. Charity ‘requires a class ofpersons defined as “needy”, as socially invalidated’ and the ‘pathological’, those who deviatefrom a biological norm who are, likewise, a palpable, material, embodied and ‘natural’manifestation of the ‘needy class’ (Longmore 1997: 140).

Pity is a recurrent experience for disabled people in their everyday dealings with their non-disabled counterparts. Religion and medicine have made it so. The attribution of pityembodies negativity, however, in more complex ways. Kreigel notes that ‘the cripple isthreat and recipient of compassion, both to be damned and to be pitied – and frequently tobe damned as he is pitied’ (1987: 34). At the political level of charitable action ‘damnation’takes two forms: The ‘less fortunate’ must be cast in the role of the subaltern, neither fullyfledged citizens nor fully fledged persons, dependent and lacking autonomy. In the act ofgiving the non-disabled person converts pity into social capital and confirms his or her statusas a benevolent person-citizen who is independent and authentic. There is no reciprocationin the charitable gift; it is a pure act of ‘othering’. The salvation of the giver is the damnationof the recipient. The giver confirms his or her agency. The recipient has his or her agencyexpropriated

‘Personal tragedy theory’ has played an important role in the development of the socialmodel of disability and about how to think about the role of pity in the economy of affectsthat shape the emotional invalidation of disabled people. Oliver (1990) argues that personaltragedy theory is central to the medicalised, individualistic approach to disability that haddominated modernity. It also underpins the charitable and compensatory social policyresponse to disabled people. The clear emotional correlate of ‘personal tragedy theory’ is pity.For the social model, it is pity, more than any other emotion, that informs the affect positionthat non-disabled people adopt as they seek to make what they regard as an appropriateemotional response to disability. Non-disabled people tend to read pity – as it is deployed in


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the context of the tragedy of impairment – in terms of compassion and philanthropy. It is –following the Western Christian tradition – a virtue. For Thomas Aquinas, mercy, theChristian response to pity, was the supreme virtue. However, the Aquinian view assumes thatthe emotion of mercy and the acts of kindness and alms giving that were supposed to followfrom it are based on agape; on unconditional love rather than on the desire to buy a ticket toparadise. The real tragedy – albeit that it is social rather than personal – lies in the failure ofcompassion and agape to find a meaningful foothold in the institutional apparatus of ‘Western’society

The position on pity that has been adopted by the Disabled People’s Movement in prac-tice has a Nietzschean feel to it. In his critique of Christianity, Nietzsche argued: ‘Nothing inour unhealthy modernity is more unhealthy than Christian pity’ (1968: 119). Far from beingthe ‘highest virtue’, the German philosopher argues that pity has ‘a depressive effect’; it is alife denying’ emotion, a ‘depressive and contagious instinct’ and a ‘multiplier of misery … aconservator of everything miserable’ (ibid.: 118). One of the slogans of the UK DisabledPeople’s Movement has been ‘piss on pity’. The contempt at being held in pity’s regard isobvious and vehement, and it is indicative of the considerable emotional gap between acharitable approach to disability and the rights approach to which the movement is com-mitted. In the non-disabled imaginary impairment/disability is equivalent to ruin, a blightedlife, a life not worth living. Disability is a collapse in one’s human currency, the destructionof one’s social, emotional and cultural capital. It is an irretrievable stumble into a dark andnegative existence, a gateway to ontological invalidation. All light and positivity are extin-guished. However, disability for disabled people is frequently constructed in terms thatembody affirmation (Swain and French 2000). The ‘practical nihilism’ of pity is somethingthat disabled people can do without (Nietzsche 1968: 118).

Although pity is not regarded in the literature as an aversive emotion, it does – like theaversive emotions – embody an orientation to its object that carries negative value. Theimpaired person is judged to be an unfortunate and broken being. The ‘complete’ non-disabledbody confirms the tragedy and ‘lack’ of impairment. Pity – rather than compassion – occupiesthe emotional space between the valid and the invalid subject. The discriminatory distinctionbetween the able body of normality and its ‘inadequate’ other is reproduced and consolidatedby charitable and philanthropic dispositions. The legacy of pity and tragedy – not to mentionguilt and shame that it inspires in its recipients – is manifest in the telos of charity that pervadesnon-disabled discourse about disability and is frequently evident in parental narratives aboutdisabled children (Avery 1999: 112). Disability – in one of its many myths – is cast as the leadactor in the age-old narrative of suffering and its alleviation, triumph over hardship. The storydoes disservice to disabled people’s lives, but it has gone down well in modernity with thephilanthropic classes moved by the fund-raisers and marketeers – in, for example, deaf andblind institutions in the nineteenth century – who, ‘in marketing themselves to their public …hunted funds by stressing the horrors of sensory deprivation’ (Borsay 2005: 95). Disabledpeople and especially disabled children are marketed by the charitable sector – particularlythrough photographic imagery – as victims, as suffering, as patients, as pitiable (Hevey 1992).The truths of representation matter little. If pathos pushes deepest into non-disabled people’spockets and turns their sympathies into cash, then so be it. Yet the feel-good fanfare of thetelethon is restricted to the donors. One does not detect the same level of pious enthusiasm inthe recipients, even when ‘they’ are invited to express their gratitude.

Even if we admit that compassion and agape were the founding motivations not only ofChristian charity but also of the modern welfare state, the institutions that these aspirationshave inspired have never delivered either recognitive or redistributive justice. They have


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merely made disabled people into a soap opera of normate self-aggrandisement, in which‘crips’ are good to be good to. The Western tradition of pity has created a moral space in whichnon-disabled actors – states and individuals – can disburse the pittance that salves the sore ofhistorical failure. Institutionalised pity delivers second-class citizenship, custodial internment,surveillance, telethons. It undercuts rights, reduces relief and support to emotion and it stallsin times of economic crisis. Thomas Aquinas argued that mercy had to be affective andeffective. It might have been the latter though not in the unconditional form recommendedby the Nazarene. It has never been the former.

Disgust

If pity makes disabled people good to be good to, non-disabled disgust makes disabled peoplegood to mistreat. Disgust stems from fear of the messiness of our own intrinsic, organic humanconstitution (Kolnai 2004: 39) and from modern cultural sensibilities that require us tomanage the animal orifices that threaten to despoil and defile (Elias 2000). Disgust is a moraltribunal used to judge others by assigning inferior status to them. To feel disgust aboutanother person is to make a case for ‘our’ superiority, ‘our’ place above the herd, ‘our’ purity.In judgement, disgust is harsh and invalidating; it makes physical and intellectual differencesinto ‘moral offences’ and ‘it knows no distinction between the moral and the aesthetic, collapsingfailures in both into an undifferentiated revulsion’ (Miller 1997: 21). Disgust is a powerful forcein the non-disabled imaginary.

The idea of disgust looms large in the philosophies of Søren Kierkegaard, Georges Bataille,Jean-Paul Sartre, Julia Kristeva and Aurel Kolnai. For Sartre, disgust and anguish are theprimary emotions through which we engage ontologically with ourselves and with thematerial objects that (are supposed to but do not) ‘fix’ our ‘meaningless’ being in this slimy,ignoble, world. We are also condemned to die and death – or nothingness – makes amockery of freedom and being. In Sartre’s world nausea is universal, embedded in the putridunfamiliarity and hostility of material objects, self and other. Existential discomfort is slimy (levisqueux) and we wallow in it. In Being and Nothingness (1969), Sartre offers an extendedmeditation on ‘the slimy’. Slime disgusts! Disgust is a reaction to ‘something perceived asdangerous because of its’ putative and perceived ‘powers to contaminate, infect, pollute byproximity, contact or ingestion’ (Miller 1997: 2). Slime inhabits an uncanny in-between,neither liquid nor solid. It is ‘the agony of water’ (Sartre 1969: 607).

Slime has no categorical place as an object. It resists assimilation into the subjective system ofmeaning. As an ‘aberrant fluid’ (Sartre 1969: 609), it breaches the commands of ontology. Slimeinvokes disgust by its presence. We fear, foremost, having it attach itself to us, being drenched init. Yet it is in us – on our tongues, in our guts, bubbling everywhere beneath our skin. Le vis-queux offends the modernist desire for ontological order because it is connected to ‘humanbaseness’ to dirt, filth, mess and impurity (ibid.: 605). It is connected to us, to our embodied andvisceral selves to the fact that ‘we live and die and that the process is a messy one emittingsubstances and odours that make us doubt ourselves and fear our neighbour’ (Miller 1997: 2).

When le visqueux overflows into consciousness it compromises integrity. It invokes thehorror of ambiguity and anomaly, just as ‘[p]eople with disabilities invoke anxiety andrevulsion because they are defined as literally embodying … loss of control, loss of auton-omy, at its deepest level, finitude, confinement within the human condition, subjection tofate’ (Longmore 1997: 154). Disability reminds the human community of its frailty. Disabledpeople are, Longmore adds, ‘the tear in our being that reveals its open-endedness, itsincompleteness, its precariousness’ (ibid. 1997 10). We – all of us – avoid reminders of our


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visceral, animal, messy selves. Impairment and sickness provide these reminders. The socialprocess of the invalidation of disabled people is locked into the disavowal of the abject selfwhich is projected onto the other who displays the signs of breakdown and defilement, signsof what I am, and will be, but refuse to face. Disgust in the presence of disability is cowardicein the face of the inevitable enemies of decay and an unaccountable failure to recognise thatmortality is not a foe, it is simply the price one pays for life.

We are all slimy, ‘leaky’ (Shildrick 1997), gross and sticky, in the process of becoming, ofbeing incomplete. Only some, however, are destined to be defined as such and are thereforeassigned by culture to the chaotic world of the in-between, the aberrant, the anomalous. Thepower and tyranny of the normate world with its hegemonic ableist values and practicesmakes the scourge of abjection stick to some people. Disabled people become the in-between, objects of castigation for those who believe their bodies to be ‘clean and proper’(Kristeva 1982) powerful, beautiful, invulnerable. Fearing the cadavers they must become,normate narcissists disavow their excretory bodies; their vulnerabilities; their ultimate andinevitable demise.

Disgust is an emotion that derives from the mortal limits of our abject bodies (Kristeva1982; Kolnai 2004) and from the leaky fluids that escape the boundaries of our corporealselves (Lupton 1998a, 1998b). It has a history that rubs shoulders with disability. The ‘gro-tesque body’ of the feudal period is described by Bakhtin as a body that ‘transgresses its ownlimits’, that is ‘open to the outside world’ that is defined by ‘its apertures and convexities’, its‘various ramifications and offshoots: the open mouth, the genital organs, the breasts, thephallus, the potbelly, the nose’, not to mention ‘copulation, pregnancy, childbirth, the throesof death, eating, drinking, defecation’ (1968: 26). This volatile ‘carnivalesque’ body evidentin medieval celebration is much more open to le visqueux than its modern counterpart. Thestory of modern civilisation (Elias 2000) pivots on the rise of the ‘modern closed body’(Mellor and Shilling 1997) shut tight by intolerance towards leakiness and impairment; astory we will illustrate below with respect to the recent history of saliva and drooling.

Elias (2000) refers to the good council of Erasmus in 1530. The Dutch philosopher remarksthat it is ‘unmannerly to suck back saliva, as equally are those who we see spitting at everythird word not from necessity but from habit’. Further advice suggested that one should ‘turnaway when spitting, lest your saliva fall on someone’ and recommended the use of ‘a smallcloth’ an object that later became known as a handkerchief (ibid.: 138). The use of thespittoon after the influenza epidemic in 1918 declined. Hygiene wars against expectorationowing to its association with the (spread of) the tuberculosis were indicative of the increasedcontrol exerted by contemporary societies in relation to expectoration and the externalisationof saliva (Smith 1988). However, ‘disgust and nausea at the ejection of saliva intensified andthe taboos surrounding it increased, long before people had a clear idea of the transmission ofcertain germs by saliva’ (Elias 2000: 134). It was the socialisation of the affects into restraintaround the release of bodily fluids in public, considerations of etiquette and civility, ratherthan scientific argument that inspired the tightening of prohibitions against spitting.

Saliva is not intrinsically problematic. Inside the mouth, invisible to others, it presents noproblem. The bodily fluids associated with love and lust include the exchange of saliva.Again, no problem! One should, however, keep one’s mouth closed while eating. This rulekeeps saliva and partly chewed food out of the public domain, in a place where it cannotcause offence. In escaping from the mouth, through dribbling or drooling (sialorrea or pty-alism to use the medical terminology) saliva becomes socially problematic. Disabled adultswho experience drooling as a symptom of impairment will be only too well aware of thedisgust response that this invokes in the public. When it escapes the container of the body,


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saliva becomes slime or, as Mary Douglas (1966) put it ‘dirt’; that is ‘matter out of place’. It isan anomaly – a pollutant – that is greeted with revulsion.

Ptyalism in babies is considered normal. It does not elicit disgust. This is not the case fordisabled adults who have ptyalism as a symptom of impairment. When Elias wrote that ‘theindividual in his short history passes once more through some of the processes that his societyhas traversed in its long history’ (2000: X1), he embraces a distinctive explanation for anormative, age-related approach to ptyalism. The drooling of the child will end. Civilisingsocialisation will stop the dribbling. Infancy is explanation and end. As time marches on,child becomes adult; as expectations of emotional control and bodily comportment rise andas thresholds of repugnance realign themselves to the mores of mature behaviour, then,should fluid bubble from the mouth, disgust will be the response. It signals the failure of self-control, the secreted saliva nauseates its audience. The disabled adult is infantilised.

Ptyalism is related to the ‘various folk and learned traditions’, including Freudianism, thatrecognise ‘homologies between mouths and anuses, mouths and vaginas’ (Miller 1997: 94), tothe appetites that promote both eating and fornication and more generally to the bodilyorifice as a locus for disgust, a point at which bodily boundaries can be breached, letting in orletting out potentially contaminating substances that threaten ontological security. Saliva issuch a substance and its central role in oral incorporation, specifically mastication, enhancesits potential to repel because it is involved in the first stage of the production of faeces. It isthe liquid at the ingress end of the ‘canal’ that assists in the passage and transformation of lifegiving, ingested material into foul waste product. It mediates between the delights of appetiteand the production of excrement. In so doing, saliva, highlights the precariousness of therelationship between desire and disgust.

Ptyalism is also linked to ‘idiocy’, not only therefore to a potentially dangerous and con-taminating body but to cognitive and intellectual deficit, to unreason, to the dark side ofenlightenment and modernity. Drooling, particularly in the nineteenth and twentieth centuries –in the wake of the medicalisation of ‘idiocy’ – was taken as a sign of ‘feeble mindedness’,‘imbecility’ or ‘mental retardation’. Eugenic thinking, which reached its height during theEdwardian period, conceived of ‘feeble mindedness’ as a ‘social evil’ (Jackson 2000), therebyenhancing the contaminating and polluting aura of its outward signs and dehumanising thosewho manifest them. Idiocy was transformed into a menace, a threat to the social fabric andbecame a source of moral panic exacerbating reproductive fears. In practice, the Victorian dis-tinction between ‘idiots and dangerous idiots’, enshrined in a number of nineteenth-centurystatutes, collapsed. All ‘idiots’ were potentially a threat to the integrity of the population and thelucidity of future generations. Droolers and dribblers were signifiers of degeneracy, of an aber-rancy so contaminating that it might potentially take us all. People such as these, who threatenedto contaminate the population, were good to mistreat, to incarcerate and sterilise.

Conclusion

A central metaphor for our contemporary times is ‘flow’. Body studies in the social sciencesand the humanities has come to embrace the concepts of kinetics and movement (Sheets-Johnstone 2009; Manning 2007; Mussami 2002) as if to admit to the redundancy of the ideaof the all too solid nature of the idea of the body as object. The term ‘liquid’ and the idea ofliquidity are much in use to describe postmodern social formations and the sensibilities thatthey inspire (Bauman 2006). Feminists like Iris Marion Young (1990: 193) – impressed bythe fluid and volatile features of women’s bodies – have argued for a ‘process metaphysic’ inwhich ‘movement and energy is ontologically prior to thingness’. This metaphorical pond


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involves attributing epistemological currency to anything that is not fixed. In disability studies,‘leakiness’ is the fluid term that has had the most influence (Shildrick 1997). Leakiness is waterwithout the agony. It is mired in the abject in the mess and waste of human bodies (Hughes et al.2005) and the taboos of civilising modernity (Hughes 2011). Saliva provides a case study. Thetime may have come – so argue the proponents of écriture feminine – to celebrate mess, wasteand excess. It is an argument that can only benefit disabled people and everyone who is sub-jected to the body fascism of ableist culture. It takes disgust and the notion of the abject bodyout of the emotional equation by universalising it. It ties it to propriety.

Fear, pity and disgust are the negative, aversive and hierarchising emotions deployed in thebowels of intolerance to depict enemies, outliers, strangers, the embodied portents of defile-ment. Such sentiments depict an alterity that is evil, sinful – in the Christian tradition – sinister,threatening, contemptible, repulsive, pitiable, monstrous, deformed and defective. This is thefigurative lexicon of ableism. All the moral deficits and spoiled identities heaped on top of oneanother to describe the antithesis of the non-disabled self. The rub is that the perfect self isfictive and unattainable. The empirical self that lives in the real world with its ableist myths anddistractions will always have a small window through which – despite denial and disavowal – tosee a refracted reflection of self in the mirror of the despised other. Sartre would not endorsethis optimism. He argues that ‘to perceive any object whatsoever as horrible is to perceive it onthe basis of a world which reveals itself as already being horrible’ (1971: 89, emphasis added).He does not say anything, however, about how the world is made so. Assigning abjection toother and not to self involves a remediable failure of empathy that is socially constructed andhistorically redeemable. There is a history of disgust that I have hinted at here and it needs tobe told as a story that can shed light on the bilious emotions that circulate in the non-disabledimaginary.

In the Anatomy of Disgust, William Miller argues that ‘the stare of the dead, the blanknessof idiocy, the possession of madness … have the capacity to horrify’ and horror is ‘a particularblend of fear and disgust’ (1997: 90). Disability unites them, at least in the non-disabledimaginary, where the addition of pity creates a disabled subject that is simultaneously good to

be good to and good to mistreat.‘Hate’ is the future of the study of emotions in the field of disability. Hate crime against

disabled people is on the rise (Roulstone and Mason-Bish 2013). It is the practical outcomeof a combination of fear and disgust in the context of social and economic crisis. Pity playsno part. If it was ever in the mind of a perpetrator of a hate crime, it has hardened intocontempt, into a purer form of aversion. Hate pulls the emphasis in the economy of affects ina significant way. It shifts the balance – in the moral economy – between responding todisability as good to be good to and good to mistreat in favour of the latter. Contempt andresentment for ‘strangers’ shape the mood of neoliberal populism. Together they foment hatewhich has become a powerful, reactionary, affective force in contemporary social relations.

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8

PSYCHO-EMOTIONAL DISABLISM

The missing link?

Donna Reeve

Introduction

Although early disability writers such as Paul Hunt (1966) documented the impact of stigmaand internalised oppression on the psyche of disabled people, these problems have largelyremained as a difficulty for the individual to manage while the disabled people’s movementaddressed the more material forms of disadvantage such as exclusion from employment,education and the built environment. It was the labelling of these personal experiences aspsycho-emotional disablism which has encouraged sociological analyses of these aspects of socialoppression, rather than leaving them in the hands of psychologists and other professionals‘who would not hesitate to apply the individualistic/personal tragedy model to these issues’(Thomas 1999: 74).

This chapter has two aims. First, it provides a description of psycho-emotional disablismand the different forms it can take. Second, the rest of the chapter explores what the phe-nomenological concept of the ‘dys-appearing’ body offers to an analysis of psycho-emotionaldisablism which reveals the relevance of this form of disablism to a sociology of impairment(Hughes and Paterson 1997). As well as enabling the concept of ‘internalised oppression’ tobe unpacked into its two components, the chapter also highlights the relevance of impair-ment via cultural prejudices when looking at the experience of psycho-emotional disablism.While discussing the topic of impairment is taken by some working in disability studies to beequivalent to reinforcing an individual model of disability (such as Barnes and Mercer 2010:96–97), the continued silence means that ‘disability theory withholds moral recognition from(the wrong kinds of) disabled people as effectively as anyone who actively stereotypes themor denies that some kinds of disability identity exist’ (Scully 2008: 175).

Similarly, Wendell (2001) has argued that disability studies needs to take greater account ofthe kind of disablism faced by those with chronic illnesses – the so-called ‘unhealthy disabled’who do not represent the ‘paradigmatic person with a disability [who] is healthy disabled andpermanently and predictably impaired’ (Wendell 2001: 21).

Finally, I would like to be explicit about the scope of this chapter which draws pre-dominantly on disability studies work carried out in the United Kingdom. Therefore, myanalysis of psycho-emotional disablism and the forms it may take is very UK-centric and it islikely that psycho-emotional disablism might look very different in other cultures,

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particularly those in the majority world which are outside my area of expertise. In addition,the chapter draws on data collected as part of my doctoral thesis for which participants withphysical impairments narrated their experiences of disablism (Reeve 2008). While this meansthat my conclusions can only be partial, I present this chapter in order to continue the dis-cussions which are needed within disability studies to broaden the empirical and theoreticalstudy of psycho-emotional disablism (Thomas 2004).

Psycho-emotional disablism

The concept of psycho-emotional disablism was first introduced by Carol Thomas in herbook Female Forms (1999). Initially, the term ‘psycho-emotional dimensions of disability’ wasused, but more recently this has been changed to ‘psycho-emotional disablism’ (Thomas2007) in order to make connections with other forms of social oppression such as hetero/sexism, ageism and racism. In order to redress the balance between recognition of the publicand more private forms of oppression, Thomas reformulated the Union of the PhysicallyImpaired Against Segregation (UPIAS) definition of disability (UPIAS 1976) to produce anextended social relational definition of disablism: ‘Disablism is a form of social oppressioninvolving the social imposition of restrictions of activity on people with impairments and thesocially engendered undermining of their psycho-emotional well-being’ (Thomas 2007: 73).

In other words, disablism can be experienced as two forms of social oppression: structuraldisablism and psycho-emotional disablism. Structural barriers are those that operate fromoutside the individual such as inaccessible environments, physical and social forms of exclu-sion, discrimination and the like, or in other words, the usual forms of social oppressionacting on a person with impairments which are implied by a social model definition. Whatdifferentiates this extended social relational definition of disablism from the traditional socialmodel definition is the deliberate inclusion of psycho-emotional disablism, disabling barrierswhich operate on the psycho-emotional well-being of people with impairments. While theoriginal UPIAS-informed social model definition of disability did not exclude these private,‘inner’ barriers, the specific omission thereof meant that they were often overlooked inanalyses of the lived experience of disability, in favour of the more visible public, ‘outer’barriers. However, recently there has been a growing interest within disability studies on thepsychological impact of disablism (see, for example, Watermeyer (2013) as well as Chapter 26by Dan Goodley in this volume).

As well as the differentiation between structural and psycho-emotional disablism, it is alsopossible to identify two sources of this latter kind of disablism (Reeve 2008). Direct psycho-emotional disablism arises from relationships that the disabled person has with other people orthemselves and is the most important form of psycho-emotional disablism. However, it is alsopossible to identify examples of indirect psycho-emotional disablism which emerge alongsidethe experience of structural disablism (ibid. 2014). I will now discuss some examples of thesetwo forms of psycho-emotional disablism using data collected as part of my doctoral researchinvolving people with physical impairments (ibid. 2008).

Direct psycho-emotional disablism

Hughes argues that the ‘disavowal of disability’ can be found in the ‘most mundane everydaywords or deeds that exclude or invalidate’ (2007: 682). Invalidation can take various forms:common examples include being stared at by strangers, having jokes made about one’simpairment or having to deal with the thoughtless comments of others (Reeve 2006, 2009).


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Related to being stared at, is its opposite – that of being actively avoided because of a pre-judice that ‘disability is catching’. Adinuf – self-named because he’d ’ad enough – had achronic illness called reflex sympathetic dystrophy (RSD) and he described how friendswould wave when they saw him in the street, but then cross the road in order to avoidtalking to him. Once he started using a wheelchair it got worse. Adinuf said, ‘They see mecoming along in a wheelchair and they’re even more frightened. They are literally frightenedto death to talk to me then, because they think that they’re going to catch something.’

Adinuf talked a lot about the hurt he felt at being treated as if he were contagious andbeing avoided. This prejudice had not been helped by a neighbour spreading a rumour thatAdinuf had AIDS. But Adinuf also experienced the reverse of contagion, whereby strangerswould ask invasive questions about his condition. Ginny, his wife, described how she wouldtry to tread a thin line between remaining polite yet retaining personal control over what wasrevealed to others. Ginny describes here how she would respond to that inevitable question,‘What’s wrong with him?’

‘He’s just got a bit of a nerves disease’. ‘But what is it?’ and I’ll say [RSD]. ‘I’venever heard of that!’ And I’ll go, ‘No, well never mind’, and I’ll walk off and Iwon’t talk to them. ‘But what does it do to you?’

It can be seen how the questioner keeps on pressing until they get to the ‘real’ question theywant to ask which could be summed up by the ‘But what does it do to you?’ question. Thequestioner needs to be reassured that Adinuf is not contagious, that it will not happen tothem and is a good example of how wheelchair users in particular can ‘generate dis-ease inthe fully mobile’ (Shildrick and Price 1999: 439).

Furthermore, in addition to this psychological ‘disavowal of disability’ – namely the projectionof unwanted fears about mortality, dying and physicality onto disabled people (Shakespeare1994: 298) – Hughes argues that there is an ontological invalidation of disability as a ‘worthwhileexistential status’ (Hughes 2007: 681). Laura, who has multiple sclerosis (MS) and who uses awheelchair, described an all-too-common experience in the street:

Then like a guy walking past me on the street, saying, ‘I’d rather be dead than be inone of those’ – well, where do these people get off? All those sort of things can bevery disturbing, can’t they?

This ontological invalidation undermines psycho-emotional well-being. It is a commentinformed by the tragedy myths of disability in our society, and is also seen in the currentdebates about assisted suicide in the United Kingdom. As can be seen here, it was also acomment which Laura found disturbing and difficult to deal with because of the hugelynegative value accorded to her life as a wheelchair user – which stood in stark contrast to theway in which she saw herself.

In these examples, direct psycho-emotional disablism is experienced at the point that thestranger reacts to the disabled person – either by saying something inappropriate or byavoiding the disabled person altogether. Being subject to these kinds of comments fromstrangers can be difficult to deal with and can undermine psycho-emotional well-being. Butit is not just the encounter itself that is disabling, there is also the ‘existential insecurity’associated with the uncertainty of not knowing how the next stranger will react. Thisuncertainty further compounds this example of psycho-emotional disablism (for a wider dis-cussion about existential insecurity see Thomas 2004: 38).


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How people respond to direct psycho-emotional disablism varies with time and place.Although for many people with visible impairments the experience of being stared at becauseof a failure to match the cultural ‘normate’ body/mind can be stigmatising and judgemental(Garland-Thomson 2009: 87), others are able to resist the normative gaze and can manage thesocial encounter in productive ways. Sue, who also had MS, used a walking frame outside thehouse and described how she used her interactions with strangers as a means of education, bychallenging assumptions about what disabled people looked like. For example, Sue said:

I don’t feel that I am stared at – I don’t know, probably I am. I sometimes feel that withmy walker, yes, I do feel people watching there. But I don’t mind, I think it’s some-thing, yes I sort of feel, ‘Well it’s good for people to see younger people with one’.

In this respect, Sue’s pragmatic approach to seeing herself as educating people about what‘disabled people look like’, is a way of returning the objectifying gaze. For her, it is one wayof retaining control over the interaction, refusing to be rendered vulnerable to the stares ofstrangers. Not all disabled people can respond in this way as it takes a degree of self-worthand self-confidence, as well as energy, to be able to adopt this approach. It is likely that otheraspects of Sue’s life, such as being in paid employment, contributed to this ability to returnthe gaze.

One of the difficulties facing disabled people within social interactions is that there is a lack ofculturally ‘agreed’ rules of engagement about how strangers should treat disabled people (Keith1996: 72). There are cultural rules about commenting on someone’s size; it is acceptable toremark on how slim someone is, but not to comment that they are fat. When it comes to peoplewith visible impairments, there is often no such restraint as was seen in the case of Adinuf’s per-sistent questioner. Another consequence of the lack of rules of engagement is that all too oftenfear of ‘doing the wrong thing’ results in avoidance rather than interaction. Therefore, typically itis the disabled person who has to ‘manage’ the interaction with other people by undertaking‘emotion work’, be it educating or reassuring the person that they will not ‘catch anything’(Reeve 2006, 2009) – the alternative would be to remain excluded and ‘Other’.

A final important example of direct psycho-emotional disablism is that of internalisedoppression which arises from the relationship that someone has with themselves (Marks1999). It happens when a disabled person internalises prejudices about disability, therebyeffectively ‘invalidating themselves’. It is not just people who grow up with impairment whofind themselves surrounded by a world in which they are not represented as disabled parents,disabled workers or disabled sexual beings. Non-disabled people also internalise norms aboutdisability and so for those people who become disabled in later life, one consequence is thatthey have to overcome their own prejudices about disability, now that they have movedfrom the included to the excluded group in society. For example, Adinuf described how he‘fought’ for two years to avoid having to use a wheelchair because of the negative connota-tions he had internalised about the kinds of people who used wheelchairs – in other words,‘the disabled’. It was only when he fell over in town and people assumed that he was drunk,that he started using a wheelchair – being seen as disabled was preferable to being seen asdrunk. I will discuss internalised oppression in more detail later in this chapter.

Indirect psycho-emotional disablism

While all these acts of invalidation are examples of direct psycho-emotional disablism becausethey arise from a relationship that the disabled person has with other people or themselves,


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indirect psycho-emotional disablism can arise from the experience of structural disablism. Thus,the experience of being faced with an inaccessible building can evoke an emotional responsesuch as anger or hurt at being excluded. Therefore, the act of exclusion operates at both amaterial and psycho-emotional level because of the message being given to disabled people thatreminds them that ‘“you are out of place”, “you are different”’ (Kitchin 1998: 351).

Spatial barriers affect disabled people’s lives at all levels: inaccessible schools affect educa-tion; poor housing restricts choices in where people can live; lack of transport impacts onemployment options; and inaccessible public spaces reduce social contact with others. Lauraeventually had to give up working for her local county council owing to the environmentalbarriers she faced at the building where she worked, once her MS had progressed to thepoint where she needed to use a wheelchair. She described how she got ‘flashbacks’ aboutthe times she was trying to get into the building when it was raining:

And not being able to open the doors, waving to people to try and get them tocome and open the doors, and you’re getting soaking wet. It was amazing howthings like that would really – I mean, now I don’t let that bother me, but it was allso new then, and distressing, it was really distressing.

The practicalities of learning how to use a wheelchair in everyday life were made more difficultby these access issues and caused her a lot of distress. Here Laura is describing how her experienceof being excluded (structural disablism) was compounded by an emotional reaction (indirectpsycho-emotional disablism).

While these different examples of (in)direct psycho-emotional disablism may appear to berelatively harmless one-off incidents, it needs to be borne in mind that for many disabled people,these experiences occur on a daily basis. Psycho-emotional disablism impacts on a person’semotional well-being and sense of self and therefore can have a cumulative negative impact overtime on their self-esteem and self-confidence (Reeve 2006). However, it is not an inevitableconsequence of having an impairment because of the interconnection with other aspects ofidentity including class, gender, ethnicity, sexuality and age, as well as other life experiences.

Phenomenology and the dys-appearing body

Phenomenological approaches have been central to the development of the sociology of thebody, which seeks to overcome the Cartesian mind/body divide by instead viewing the bodyas both subject/object (Merleau-Ponty [1962] 2005). The world is perceived through thebody; as embodied subjects, experience is not simply an ‘inner’ phenomenon but is at thesame time related to involvement in a world which exists independently of someone’sexperience of it. In other words, there is a ‘lived body’ which ‘simultaneously experiencesand creates the world’ (Paterson and Hughes 1999: 601). In The Absent Body (1990) Lederuses phenomenological ideas to develop the concept of the ‘dys-appearing’ body showinghow bodily awareness is absent most of the time (it disappears) and it is only when oneexperiences pain or stumbles, for example, that the body is suddenly brought to the fore-ground. The hyphenated term ‘dys-appear’ is used quite deliberately; although the dys partcomes from the Greek for ‘bad’, ‘hard’ or ‘ill’ as in ‘dysfunctional’, in Latin dys can meaninstead to pull ‘away, apart, asunder’ (Leder 1990: 87). At times of dys-appearance, whetherdue to illness or as the result of the body changing during puberty, the body returns to theforeground of awareness at the same time as being experienced as away or apart from the self:‘In experiential terms, one becomes aware of the recalcitrant body as separate from and


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opposed to the “I”. … The self that takes note of the body remains a moment of theorganism, an embodied self’ (Leder 1990: 88, emphasis in original).

Leder identifies two different ways that the body can dys-appear. The onset of pain, which isan intracorporeal phenomenon, is a reminder of the physicality of our bodies – if I have twistedmy ankle I will need to pay attention to how I walk. In contrast, intercorporeal phenomenainclude ways in which the body dys-appears in interactions with the social world – be theypeople, environments or institutions; for example, wearing the wrong clothes to a socialgathering or feeling that one is too thin or too fat.

In addition, the dys-appearance of the body is associated with a ‘demand’ for attention;looking at one’s reflection in the mirror or concentrating on the body during a yoga sessionare to some extent optional activities, whereas the onset of pain or feeling overdressed at asocial event brings the body sharply into focus. As well as making a demand on attention,dys-appearance also disrupts at the existential level because of the way that the body is tiedup with self-interpretation.

It is Leder’s discussion of social dys-appearance in relation to intercorporeal interactionsbetween the body and the social world that are of particular interest here. Acknowledgementis made of the ways that dys-appearance is linked to aesthetic judgements which in turn arelocated in particular times and places. The loving gaze of a partner is different to a hard starefrom a stranger in the street:

As long as the Other treats me as a subject – that is, experiences withme to the world inwhich I dwell, mutual incorporation effects no sharp rift. But it is different when theprimary stance of the Other is highly distanced, antagonistic, or objectifying.

(Leder 1990: 96, emphasis in original)

Like many other phenomenologists, Leder does tend to assume that people have a ‘normaland healthy body’ (ibid.: 86) and to therefore see illness and injury as dys-appearance. (For athorough critique of phenomenology and impaired bodies see Scully 2008: ch. 5). However,recognition is made about how ideology and power relations can influence where/whenbodies dys-appear. In the case of disabled people, Leder observes that

biological dysfunction may inaugurate social dys-appearance, such as is frequentlyexperienced by the handicapped and disabled. The body is at once a biologicalorganism, a ground of personal identity, and a social construct. Disruption and heal-

ing take place on all these levels, transmitted from one to another by intricatechiasms of exchange.

(1990: 99, emphasis added)

It is this concept of social dys-appearance and how it is revealed in the everyday lives ofdisabled people which will feature in the rest of this chapter.

The ‘dys-appearing’ body: embodied disablism and/or sociologyof impairment?

Hughes and Paterson (1997) have turned to phenomenology as a way of retaining the bodyas a fleshy object. This carnal sociology theorises ‘the body as the place where self and societyinteract’ (Goodley 2010: 56, emphasis in original). For some disability studies scholars thisrepresents a way out of the impairment/disability dualism, allowing for an account of an


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impaired body which has agency and activity and is not simply an object which is acultural andahistorical (Paterson and Hughes 1999). Subsequently, as part of their project to understand the‘carnal politics of everyday life’, Paterson and Hughes (1999) have drawn on the phenomen-ological concept of the dys-appearing body to add further weight to their arguments advocatinga sociology of impairment.

Paterson and Hughes provide examples of how disabling barriers of all kinds cause theimpaired body to ‘dys-appear’, i.e. to become the thematic focus of (unwanted) attention.

One can argue – applying Leder – that the disablist and disabling sociospatialenvironment produces a vivid, but unwanted consciousness of one’s impaired body.Here, the body undergoes a mode of ‘dysappearance’ which is not biological, butsocial. For example, in the context of the ubiquitous disabling barriers of the spatialenvironment, one’s impaired body ‘dys-appears’ – is made present as a thematicfocus of attention. When one is confronted by social and physical inaccessibility oneis simultaneously confronted by oneself; the external and the internal collide in amoment of simultaneous recognition. When one encounters prejudice in behaviouror attitude, one’s impaired body ‘dys-appears’.

(1999: 603)

The examples that the two authors give here refer to what I have termed as indirect and directpsycho-emotional disablism, respectively; therefore, the ‘dys-appearing’ body is also highly per-tinent to a discussion about psycho-emotional disablism. At the point of dys-appearance there isalso a psycho-emotional response – which can include feelings of anger, frustration, shame,embarrassment, or awkwardness. The previously absent body comes to the foreground ofattention because of the apparent dis-ease in the mind of the stranger, based on myths fuelled bythe cultural ‘tyranny of perfection’ (Glassner 1992 cited in Hughes 1999: 159).

The experience of inaccessible buildings or the thoughtless comments of others can causethe impaired body to dys-appear and are clearly examples of intercorporeal phenomena. Theproblem lies with a social and physical world which is set up to accommodate certain kindsof normate bodies. Paterson and Hughes suggest that part of the quest for citizenship is basedon creating new environments which are more inclusive of diversity, so that people withimpairments are no longer reminded that they are ‘Other’ each time their bodily differencefails to find a fit. In other words, ‘a world in which their bodies do not “dys-appear”’(Paterson and Hughes 1999: 604), a world free from disabling barriers.

Paterson and Hughes use the concept of the dys-appearing body presented in Leder’sparticular version of phenomenology to support their call for a sociology of impairmentwhich is linked to, but still separate from, disability. Drawing on the examples which Pater-son and Hughes use to support a sociology of impairment, I have shown that these can alsobe described as forms of psycho-emotional disablism. The dys-appearing body can revealways in which ‘disability is embodied and impairment is social’ which involves consideringboth disablism and impairment together (rather than either/or) (Hughes and Paterson 1997:336, emphasis added). I will discuss this later in the chapter.

Internalised oppression unpacked

I now want to discuss some further examples of psycho-emotional disablism which expandon the points raised by Paterson and Hughes (1999) in their discussion of the dys-appearingbody. So far, I have considered examples which looked at the dys-appearing body within


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intercorporeal encounters between the disabled person and other people – the invalidatingstare or comment. As I indicated earlier, direct psycho-emotional disablism can also occurwithin the relationship someone has with themselves, in the form of internalised oppressionwhich is very difficult to challenge; it is often only through contact with other disabledpeople that one sees alternatives to the mainstream cultural lexicon which equate disabilitywith loss and lack. I have written elsewhere (Reeve 2006) about the long-term impact thatinternalised oppression can have on a person’s psycho-emotional well-being, directlyrestricting the choices about who they can be, such as a potential parent, lover, worker, orstudent. This ‘false consciousness’, to use the Marxist term, represents a state in which thebody never dys-appears because the individual has wholly internalised the stereotype,believing that is ‘normal’ that people like them do not have children, for example.

While not advocating that false consciousness is politically desirable for disabled people asa way of life because it remains a form of psycho-emotional disablism, it does have thebenefit that one is living in ‘blissful ignorance’. The next step towards enlightenment,which in my case was being introduced to the social model of disability, is that of movinginto ‘double consciousness’. Although this transition marks the first important step towardsidentifying disabling barriers, it can be quite traumatic: ‘While the subject desires recogni-tion as human, capable of activity, full of hope and possibility, she receives from thedominant culture only the judgement that she is different, marked, or inferior’ (Young1990: 60). The experience of double consciousness, whereby one is thus defined by both adominant and subordinate culture, is what Young calls ‘cultural imperialism’ (ibid.: 58–61).This is one of the five faces of oppression faced by people marked as Other (for moreinformation see ibid., ch. 2).

In comparison to false consciousness, the experience of double consciousness is associatedwith chronic dys-appearance because of the continual ‘presence-as-alien-being-in-the-world’(Paterson and Hughes 1999: 603) associated with cultural imperialism. Whereas Paterson andHughes discuss what I consider to be forms of direct psycho-emotional disablism which areintercorporeal and intersubjective events, these are discrete albeit frequent occurrences. Instead,here I am referring to an experience which is both intercorporeal and intrasubjective. A goodexample of this is provided by Lucy who had become disabled following a car accident.When she came to marry for the second time she described how she did not feel able towear a white dress:

LUCY: Because I didn’t want to walk down the aisle again, all in my perfect white dress,whatever I chose to wear, realising that I wasn’t perfect anymore. Because on your wed-ding day – I had been married before and it was such a special day and you feel all – and Ididn’t feel I could do it this time – walk down the aisle and look special, because of mynew-found disability.

DONNA: So it wasn’t because you were marrying for the second time –

LUCY: No. And I didn’t feel perfect anymore, as you do when you’re going down the aisle. Thatwas quite an important thing I thought … I wanted a red dress. I went round everywhere,[friend] went with me – [city name, city name] – everywhere, couldn’t find a red dress.

DONNA: Why red?LUCY: Because I wanted to be shocking. If everyone was going to look, bloody look at my red

dress.

Lucy now walks with a limp and she talked a lot about dealing with people staring at her,so ‘walking down the aisle’ will be different now that she has an impairment. Lucy has also


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internalised the prejudice that disabled women are imperfect women and she does not feel thatshe can match up to the image in UK society about brides in long white dresses glidingeffortlessly down the aisle. This illustrates a gendered dimension of psycho-emotional dis-ablism because she feels of less value than non-disabled women simply because she now hasan impairment. Her solution – or reaction – to this problem is to choose a red dress to shockpeople, so that they have something else to stare at instead of her limp. Lucy has challengedthe conventional image of the blushing bride by choosing a colour which is more usuallyassociated with a brothel than a church, which is her way of dealing with feeling imperfect.Lucy is also using the colour as a way of concealing her impairment, so this is an example ofhow impairment can interact with psycho-emotional disablism (in this case internalisedoppression) and influence the way that someone challenges their internalised oppression.

I would suggest that the red wedding dress can be seen as a form of resistance because Lucyhas deliberately stepped outside the social ‘norm’ that brides wear white by creating her ownrules about bridal gowns. Her red dress made her body disappear so that it no longer dys-appeared when seen by others. The red dress as a productive outcome of psycho-emotionaldisablism can also be seen as an example of how dys-appearance can produce healing ratherthan disruption (Leder 1990: 99). Similarly, the way in which Sue described earlier how sheused her encounters with strangers as a way to educate them what about what disabled people‘look like’ could also be considered as a healing outcome of dys-appearance.

The term ‘internalised oppression’ tends to incorporate both of these understandings ofoppression – false consciousness and double consciousness – which I have tried to untanglehere as part of the process of understanding the different actions of direct psycho-emotionaldisablism. In reality, one may experience false consciousness in some areas of life and betroubled by double consciousness in others. I would also suggest that people who seek toeducate people with impairments about disablism need to remain alert to the emotional dis-tress this can cause. While disability equality training can be empowering, the ‘road toDamascus’ is not an easy path to take. In the same way that an abused child finds it easier toblame themselves than their parent (Miller 1991), it can be easier to believe that exclusionfrom the social world is because of personal impairment rather than because of a society thatmakes normative bodies and minds the necessary passport for full inclusion. Finally, it couldbe argued that the term ‘internalised ableism’ is a better term than ‘internalised oppression’because it specifically draws attention to the ableist stereotypes impacting on the lives ofpeople with impairments (for more information see Campbell 2009, ch. 2).

(Re)producing the disabled subject

Up to this point I have been discussing examples where the dys-appearing body was relatedto finding oneself ‘out of place’ when failing to meet the carnal norms of an ableist world. Inow want to consider the creation of disabled bodies when claiming disability-related bene-fits and other concessions such as disabled parking badges (Porter 2000; Shildrick 1997).Personal Independence Payment (which replaced Disability Living Allowance) providesmoney for helping disabled people with their mobility and personal care needs. As part of theapplication process the claimant is required to report in detail how their body fails to meetthe ‘norm’ and a successful claim is more likely if the language used matches that recognisedby the government agency (Daly and Noble 1996). The claimant is (re)producing the dis-abled subject and consequently only certain bodies and minds are considered to be ‘disabled’and eligible for benefits. Similarly, when using accessible toilets and parking spaces which are


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marked with the universal wheelchair symbol, those who fail to match the stereotypicalimage of disability can be challenged by others over their right to use these reserved facilities.It has been argued that the current wheelchair symbol is problematic as a representation fordisability because it reinforces a very narrow view of what disabled people ‘look like’ andends up separating wheelchair users from other people with impairments who also need touse these facilities (Bichard et al. 2007).

As part of the process of creating culturally recognisable ‘disabled bodies’, the disabledperson is required to foreground their impairment, to make their own body dys-appear. So,for example, someone may ‘limp worse’ in order to prove their right to park in an accessiblespace and to avoid being challenged by a passing stranger. For example, Lucy said:

I limp worse when I get out the car than I do normally [laughs] just to show peoplethat I have got a disability, I can park in the bay … That’s deliberate. It’s probablysubconscious now, but in the beginning [after the accident] it was deliberate.Because my husband’s noticed it – because he says, ‘What’s the matter with youtoday?’ And I say, ‘Nothing’. ‘Oh, alright then’. And then I forget and start walkingthen, once I’ve passed the bay, and people look [laughs].

Here Lucy is describing a deliberate performance that she puts on in order to assert her identityand rights as a ‘real’ disabled person; however, this performance is ‘leaky’ and incomplete whenshe fails to maintain the limp until she goes into the shop and is resubjected to the judgementalgaze of others. Similarly, when claiming sickness benefits one has to reproduce the incapablebody/mind and to identify as a disabled person who is incapable of working (Price and Shil-drick 1998). It can be psychologically difficult to have to describe oneself in terms of themedical and deficit discourses which underscore the application process.

As I indicated above, being forced to define oneself in terms of what one is unable to doimpacts on psycho-emotional well-being. In some cases, being forced to describe the detailsof impairment can make it temporarily worse because the person becomes the person theyhave described (Reeve 2008); this is particularly true for some people with mental healthdifficulties who have been advised to be positive about what they can do in order to managetheir symptoms. Mental health difficulties often fluctuate and are much more complicated to‘measure’ than physical or sensory impairment. The stress and anxiety of going through thebenefit application process can make mental health conditions worse, particularly as theWork Capability Assessment (which forms part of the application process for the EmploymentSupport Allowance that replaced Incapacity Benefit in 2008) has been described as being ‘soriven with faults that it’s hard to see what kind of mental illness would, under its terms, actuallyqualify someone for help’ (Williams 2011).

Having to reconstruct oneself as disabled can therefore make impairment temporarilyworse because one is forced to produce the dys-appearing body/mind within a harsh welfaresystem situated in a culture which labels disabled people as lazy or fraudulent.

(Re)producing the ‘normal’ subject

Finally, another example of how the dys-appearing body can be more consciously fore-grounded occurs when passing – adopting ‘norms’ of behaviour and movement and ‘passing’as non-disabled. In this example of social dys-appearance, the body ‘incorporates an aliengaze, away, apart, asunder, from one’s own, which provokes an explicit thematization of thebody’ (Leder 1990: 99).


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In other words, the body is behaving according to cultural norms of able-bodiedness ratherthan being free to adopt any mode of behaviour and movement which is ‘normal for them’.This can protect someone with invisible impairments from experiencing the kinds of invali-dation that those with visible impairments (and/or impairment effects (Thomas 2007: 135–137)) experience, such as being avoided or stared at. However, there is always the risk thattheir disability status will be revealed, thereby risking psycho-emotional disablism when theirbody dys-appears as they become subject to the prejudiced comments of strangers. This givesrise to the ‘negative psycho-emotional aspects of concealment’ (ibid. 1999: 55). Similarly,Lingsom (2008) argues that people with invisible impairments occupy a highly vulnerableposition because they are continually managing whether to conceal or disclose informationabout their impairment. If someone chooses to pass as ‘normal’ then they will be expected byothers to conform to conventional norms of behaviour and stamina – which can beparticularly difficult if an invisible impairment is fatigue.

There can be difficulties disclosing an invisible impairment; for example, a young personwho has experienced a stroke may be disbelieved because strokes are viewed as impair-ments that only affect older people. It can also be difficult to convince others about thereality of some impairments such as pain and fatigue, a problem faced particularly by peoplewith chronic illness (Wendell 2001). As mentioned previously, people with invisibleimpairments may also be challenged when attempting to use facilities reserved for disabledpeople because they do not match the stereotypical image of someone who is elderly and/or a wheelchair user. Therefore, like Lucy who will ‘limp worse’, they may choose to use astick, i.e. adopt a visible marker of impairment, in order to use such facilities without har-assment – but this may also have an emotional cost in publicly identifying as disabled(Reeve 2002).

Leder (1990) argues that dys-appearance makes demands at both the attention and exis-tential level because of the way in which the body is tied up with self-interpretation. So, itcould be suggested that passing and exposure are both forms of dys-appearance because of theimpact they have on self-identity as disabled, non-disabled or something in between. Inaddition, when someone adopts a visible marker of impairment without seeing themselves asa disabled person, this act risks producing a conflicted self because ‘[t]he deployment of thedenotation of disability strategically cannot be undertaken without some incorporation ofinternalised ableism, either at a conscious or at an unconscious level’ (Campbell 2009: 28).

Thus, whether someone is describing themselves in terms of the medical format of benefitapplication forms or will ‘limp worse’ when using an accessible parking space, then they riskinternalising the culturally informed ‘disabled’ identity that they are performing.

The role of impairment in experiences of psycho-emotional disablism

Although someone needs to have (or have had) a perceived impairment in order to experiencedisablism, the social model of disability otherwise cleaves the experience of disability from that ofimpairment. The original UPIAS statement which underpins the conventional social modelunderstanding of disability clearly states that ‘[d]isability is something imposed on top of our

impairments by the way we are unnecessarily isolated and excluded from full participation insociety’ (1976: 14, emphasis added). This has been politically very useful for challenging struc-tural disablism by ‘fixing’ society, not the individual. Another consequence of the clear separationof disablism from impairment has been the assumption that ‘disabled people share a commonexperience of oppression, regardless of impairment’ (Shakespeare 2006a: 31). However, disabledpeople do not share a common experience of disablism: factors including class, age, sexuality,


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gender and ethnicity all impact on the consequences of impairment and therefore on the socialand economic experience of disability (ibid. 1996).

Within disability studies, the impaired body has received more attention from a variety oftheoretical angles (for a more detailed discussion see other chapters in this volume as well asThomas 2007, ch. 5). In the remainder of this chapter I want to consider the interplaybetween psycho-emotional disablism and impairment. This is an initial attempt to respond tothe following statement:

I have come to recognise that psycho-emotional disablism – both its enactment and itseffects – should be thought about as fully embodied. This form of disablism should notbe treated as one that operates simply at the level of mind or consciousness.

(Ibid.: 152)

Earlier in this chapter I used the concept of the dys-appearing body to illustrate howpsycho-emotional disablism is embodied as well as social and political, namely that ‘dis-ability is embodied’ (Hughes and Paterson 1997: 336). The accounts of people like Lucyand Adinuf reveal how impairment/impairment effects and the experience of disablism areintertwined and can impact on each other. I have shown how the experience of psycho-emotional disablism can make impairment worse. Similarly, the physical difficulties causedby negotiating an inaccessible environment (structural disablism) can also make impairmentworse (Crow 1996).

I now want to take a step further by suggesting that psycho-emotional disablism provides aninsight into the ways that impairment and disablism can be interconnected in more subtle ways.I need to stress that I am not suggesting that impairment causes disablism, but I want to suggestthat the manner in which psycho-emotional disablism is enacted – the kinds of disablist com-ments and treatment that someone receives – is often associated with the type of impairmentand impairment effects that are visible/known to the other person. (This is not to deny thatsomeone with an invisible impairment can also experience psycho-emotional disablism if theyfind themselves in a group of people who are making jokes about that particular impairment,such as incontinence, for example.) Psycho-emotional disablism is critically associated with thecultural representations of disability within the media and wider society. I discussed earlier howfears of contamination or beliefs about the inability or undesirability of impaired bodiesunderpin the invalidating responses of others towards people with impairments. The strongconnection between cultural stereotypes and oppression was discussed earlier with reference tocultural imperialism, which is kept in place by stereotypes which are so embedded in culturethat they go unnoticed and unchallenged (Young 1990). For example, the ubiquitous wheel-chair symbol ends up reinforcing the hegemony of particular kinds of impaired bodies whichwill be accommodated and recognised as ‘disabled’.

Watson (2003) highlights the importance of understanding the processes whereby prejudice,and therefore oppressive stereotypes, are maintained and reproduced within contemporaryculture, society and practices. As I discussed earlier, it is in the everyday interpersonal interac-tions that most psycho-emotional disablism is enacted, based on prejudice and stereotypes. Ifpsycho-emotional disablism is embodied, then it could be predicted that prejudice (which leadsto disablism) is influenced by perceived impairment – that psycho-emotional disablism takesdifferent forms depending on what is known/visible to the other (non)-disabled person. Forexample, while I am stared at by people because I walk differently with two sticks, I am notsubject to the kind of ‘souvenir photography’ that Shakespeare (2006b) experiences – becausewe have very different impairments.


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Analysis of the 2009 British Social Attitudes Survey showed that the assumption thatpeople hold either ‘negative’ or ‘positive’ attitudes towards disabled people was not borne outby the data. Instead, attitudes were related to the perceived impairment: ‘Respondents’demographic characteristics interact with both the situation in which a disabled person isencountered, and the impairment that they have, in influencing the attitudes people hold’(Staniland 2011: 72, emphasis added).

People were much more likely to be prejudiced towards people with learning difficultiesor mental health difficulties than those with physical or sensory impairments. Similarly, theformer two groups of disabled people experience a disproportionately higher rate of disablisthate crime compared to other groups of disabled people (Emerson and Roulstone 2014); thisis not surprising if disablist hate crime is seen as an extreme form of direct psycho-emotionaldisablism. Prejudices about disabled people are based around hierarchies of impairment whichare rooted in cultural myths about disability (Tregaskis 2003). This differentiation of therelative value of disabled people by impairment type is also reflected in the prejudices held bydisabled people (Deal 2003). Deal points out that disabled people need to acknowledge theirown prejudices before they can demand a wholly inclusive society because hierarchies ofimpairment end up further isolating and oppressing those disabled people perceived to betowards the bottom end of the hierarchy. This process can be complicated because peoplewho acquire impairments in adulthood have to deal with the change from being ‘normal’ to‘Other’ which entails shifting internalised stereotypes and dealing with guilt when they reflecton how they themselves used to view disabled people in the past (Reeve 2008).

Conclusion

In this chapter I have provided an introduction to psycho-emotional disablism and showedhow it can impact on the emotional well-being and self-identity of disabled people. Aspsycho-emotional disablism is enacted at the inter/intrapersonal level, it is beneficial to locatethe analysis at the point where the ‘cultural constructions of disability and impairment areplayed out within and through the body’ (Goodley 2010: 56). To that end I have exploredhow the phenomenological concept of social dys-appearance highlights the embodied natureof psycho-emotional disablism and the manner in which it is mediated by impairment andimpairment effects via the operation of cultural prejudices about disability. Therefore, theconcept of psycho-emotional disablism can be viewed as a missing link when considering asociology of impairment in which ‘disability is embodied and impairment is social’ (Hughesand Paterson 1997: 336, emphasis added).

While the ‘arid materialism of disability studies’ has been very effective at challenging struc-tural disablism (Paterson and Hughes 1999: 599), it quite deliberately does not engage withimpairment and so does not allow for any theoretical engagement with the lived body. Inresponse, some would argue that phenomenology has little to offer disability studies because itonly provides interactionist accounts of living with impairment (Barnes and Mercer 2010). Thecontinued ‘stubbornness of the ‘real’ body’ cannot be ignored when analysing psycho-emotionaldisablism because of the way in which impairment and prejudice are interlinked within thecultural lexicon (Thomas 2007: 128). Therefore, I have used phenomenology as a way ofproviding insight into psycho-emotional disablism which retains an interconnection with therealities of living with physical impairment and experiencing disablism.

Although much progress has been made in removing sources of structural disablism, theprevalence of prejudice about disability in mainstream society and culture means that psycho-emotional disablism will be much harder to eradicate. For example, disabled people are


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reporting increased rates of discrimination and harassment which are directly linked to therhetoric about disability benefits in the media (Boffey 2011); psycho-emotional disablism, likethe fleshiness of the lived body, is still very much alive and kicking. This is not surprisinggiven that cultural imperialism is a key component of psycho-emotional disablism. Therefore,even when legislation and policy exist to protect disabled people, oppression continues tooperate via ‘informal, often unnoticed and reflective speech, bodily reactions to others, con-ventional practices of everyday interactions and evaluation, aesthetic judgments and the jokes,images, and stereotypes pervading the mass media’ (Young 1990: 148).

This goes someway to explaining why psycho-emotional disablism continues to be a problemfor disabled people in the UK, more than 20 years after the enactment of the Disability Dis-crimination Act. Thus, psycho-emotional disablism is important. It is not just a ‘personal trouble’ –it needs to be seen as a public issue caused by the ableism that is endemic in our society.

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9

THE BIOPOLITICS OF DISABILITYAND ANIMALITY IN HARRIET

MCBRYDE JOHNSON

Jan Grue and Michael Lundblad

Introduction

This chapter represents a multidisciplinary and collaborative approach to an enduring problemin disability studies, namely the valuation of different lives and kinds of lives. The authors believethat this problem can be explored in interesting ways if disability studies and human-animalstudies interact more closely. Historically, the academic fields that study disability and animalityhave not been in close communication. In fact, their relationship can perhaps more accuratelybe described as being wary of the implications of findings in the other field.

We feel, however, that communication – and collaboration – may turn out to be essential.This is partly because key problem areas that concern both fields, including the criteriaaccording to which different lives are valued and what exactly constitutes a life that is worthprotecting, are also approached through other lines of inquiry, including the neo-utilitarianismthat is most closely associated with the philosopher and ethicist Peter Singer. In Singer’sapproach (admittedly simplified), capacities for higher cognitive functions and for sufferingoften become the major criteria that are deployed across species boundaries in order to deter-mine the relative value of different beings, and thereby the lives of many animals and disabledpeople are potentially devalued.

The 2002 debate between Singer and Harriet McBryde Johnson, one of the major dis-ability activists of her generation, is one of the points of departure for this chapter. In a muchvaunted encounter at Princeton University, USA, Johnson defended the intrinsic value of thelives of human beings with disabilities, while effectively refusing to countenance Singer’sposition that species boundaries cannot by themselves constitute grounds for distinguishingbetween different forms of life.

In this chapter, we delve deeper into what lies beneath the Singer-Johnson encounter, alongwith Johnson’s other writing, to consider the broader issues at stake. The chapter is structured as adialogue. This reflects our desire not to conflate or artificially collapse animality studies and dis-ability studies into a single disciplinary endeavour, but rather to find those areas and problems towhich both fields have something important to contribute. We hope that the text will read notas a debate, but as an exploratory conversation with the shared purpose of finding out whatdisability studies and animality studies can teach each other, as well as other disciplines.

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Humans and other animals

MIKE: Before her death in 2008, disability activist and lawyer Harriet McBryde Johnsonpublished a novel, Accidents of Nature (2006), and a memoir, Too Late to Die Young: Nearly

True Tales from a Life (2005). The memoir includes her account of meeting animal rightsadvocate and ethics professor Peter Singer, who invited her to give a talk at Princeton Uni-versity in 2002. Singer’s utilitarian philosophy notoriously questions the value of the lives ofdisabled people such as Johnson, who begins her description of the encounter rather drama-tically: ‘He insists he doesn’t want to kill me. He simply thinks it would have been better, allthings considered, to have given my parents the option of killing the baby I once was, and tolet other parents kill similar babies as they come along’ (2005: 201). While Johnson is ofcourse appalled, along with disability advocates everywhere, she also tries to understandwhere Singer’s arguments come from and how they might make sense to him. But she isunwilling to engage with Singer’s thinking about animals and animal ethics when she is askedabout it during the course of her visit to Princeton. Ultimately, she argues, ‘I am still seekingacceptance of my humanity; Singer’s call to get past species seems a luxury way beyond myreach’ (ibid.: 228, emphasis added).

Jan and I come from different backgrounds, generally from disability studies and animalitystudies, respectively, but we have in common a deep frustration, to say the least, with PeterSinger’s views. From my perspective, Singer is problematic as a representative of animal

advocacy as well as in relation to human disability, even if I otherwise think that we shouldimprove the ways we think about and act towards non-human animals. But Jan and I share adesire to think further about connections between disability and animality in new andhopefully more productive ways, particularly through the frameworks of biopolitics andposthumanism. We are also interested in exploring questions related to the possibility – orperhaps not – of certain kinds of coalitions between those working on animal and disabilityissues. Johnson’s writing can help us to engage with the tensions and obstacles, as well as thepotential, related to thinking across different forms of advocacy, even perhaps within thedisability movement itself. In order to explore these issues, we will consider Johnson’smemoir as well as her subsequent novel.

JAN: I’ll pick up where Mike left off. I should probably add that my background is partlyin disability studies in the American sense, but primarily from a Scandinavian tradition. This isa version of disability studies that has historically stressed incrementalism and normalisation,and which tends to construe the disabled individual in relation to a mostly benign state.The central metaphor in Scandinavian disability studies has been the ‘gap’ between individual

capabilities and societal demands. It is a model of disability that presupposes a high degree ofmutual interest between disabled people and the state, and which more than likely reflectsthe social democratic and egalitarian aspects of Scandinavian societies, but also its corporatistand conformist aspects. In Scandinavian disability theory, disability could in principle beeliminated, leaving only people who happen to have impairments but who have somehowbeen fully integrated and normalised.

By contrast, American disability studies, in which Johnson’s work is situated, has muchmore strongly emphasised identity formation in opposition to state power and disability as adefining identity marker, or ‘master status’, to borrow the phrase of the sociologist EverettHughes. This stance towards identity is one of the reasons I find US disability studies inter-esting in general and Johnson’s work interesting in particular. The Scandinavian states, whichare far more progressive in terms of economic policy towards disabled people than are theUnited States, also embrace, in a way largely unproblematised, what Rosemarie Garland-

The biopolitics of disability and animality

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Thomson (1997) has termed the normate, namely the composite but chiefly unmarked identityposition towards which disabled people are expected to strive as individuals. The position of thenormate in Scandinavia is very strong, and this influences Scandinavian politics when it comes togender, race, sexuality and very likely also animal rights. The Norwegian minister for integrationannounced on her Facebook page, on 18 October 2016, that ‘here [in Norway], we eat pork,drink alcohol, and show our faces’ – a statement which of course has multiple implications forvegetarians as well as for Muslims and Jewish people. Scandinavian societies, although they aredescriptively and increasingly heterogeneous, remain to a large extent normatively homogeneous.

In his introduction, Mike touched on the possibility of building coalitions. Disabilityactivism runs a risk of coalescing around what the World Health Organization, in its 2011World Report on Disability, rather wonderfully terms ‘classic’ impairment groups – wheelchairusers, blind people and deaf people, in case you were wondering. This is a very small subsetof disabled people. The same report points out that one seventh of humanity is disabled.However, a far smaller number recognise themselves as such. The disability field is in direneed of coalition building in order not to be fragmented into a million diagnostic pieces. Andas has been pointed out by disability scholars like Irving Zola (1972) and by sociologists ofdiagnosis like Annemarie Jutel (2009), diagnosis is in many cases a form of social control.

Coalition building requires finding a voice. And it has proved troublesome to find a way tovoice disability as such. To me, that problem has to do with the matter of speaking on behalfof oneself or on behalf of others. One particular form of disabled experience is not necessarilyunique, but it is usually, by definition, outside the norm in one way or another. In one definition,disability is the result of the full range of human biodiversity encountering sociopolitical stric-tures. And speaking for ‘humanity’ raises not only problems relating to non-human animals (atopic that Mike will address more directly), but also the problem of silencing marginal voices.

One fundamental problem with Peter Singer’s work is and remains his assumption thatethics should be an attempt to assume a ‘universal point of view’, as in his book Practical

Ethics. Drawing on the nineteenth-century utilitarian Henry Sidgwick, who coined thephrase ‘the point of view of the universe’, he attempts to generalise what is effectively thepoint of view of a particular kind of rational agent. It is universalism by way of particularism,and therefore obscures many if not most kinds of particular experience, of particular lives.

Harriet McBryde Johnson’s position, by contrast, is specific, if not particularist, and fiercelyso. Moreover, her position appears to me reflective of a specific and particular historicalmoment – essentially, the first historical moment in which physically disabled people were in aposition where they could speak for themselves, as opposed to being spoken for. That stance isstill a fairly new one in Scandinavia, where disability politics are still strongly influenced byvoices speaking on behalf of disabled people, whether family and next of kin, non-governmentalorganisations (NGOs) run by non-disabled people who are often next of kin, or socialresearchers. We are trying to figure out what disability identity might be in this unipolarsociety, which is, I think, very susceptible to the kind of universalist utilitarianism advocated bySinger.

If I can generalise for a moment, Scandinavian disability politics, which is a form of bio-politics, appears vulnerable to a kind of false universalism, a stance in which every disabledperson can and should become a ‘normal’ citizen, but only at the cost of disavowing theirparticular embodiment and its enduring difference. It obviates the possibility of coalitionbuilding, since no coalitions should exist outside the bounds of normal citizenship.

Johnson, along the same generalising lines, indicates a kind of American disability politicsthat stresses particular forms of experience. It is linked to the identity politics argument thatspeaking for oneself is politically necessary, and it actualises the problem of coalition building in


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a different way. If experience is highly divergent, if it is difficult if not impossible to speak onbehalf of others – how is a broad coalition inside the disability field possible, let alone beyond it?

Coalition building and advocacy

MIKE: I think Jan’s question about speaking for oneself as opposed to speaking for others isquite useful when comparing and situating different forms of advocacy related to bothdisability and animality. It is only relatively recently that animal studies has become moreprominent in the academy, even though organised advocacy on behalf of animals can betraced historically in the United States and Europe back to the nineteenth century. Thepublication of Singer’s book, Animal Liberation, in 1975 can be seen as a watershed momentin the contemporary movement for animal rights, but influential critiques of his work havegrounded other forms of animal studies – or what I would prefer to call attention to animal-

ities of various kinds – in the academy for several decades by now, ranging from DonnaHaraway to Jacques Derrida, Cary Wolfe, and many others.1 The question of ‘voice’ inrelation to non-human animals – or ‘speaking for animals’ who cannot ‘speak for them-selves’ – also has a long history, but similarly has been critiqued for its insistence on voice in atraditional sense, along with supposedly clear boundaries between ‘the human’ and ‘theanimal’. We have difficulties imagining dogs writing their own memoirs, for example, orchickens organising their own protests against factory farms. To compare the disabilitymovement’s mantra of ‘nothing about us without us’ to the potential for non-human animalsto ‘speak for themselves’ might thus seem absurd at best and highly offensive at worst. Butthere is also potential for further reflection here, including the consideration of ‘voices’ thatmight be difficult to hear or recognise. Among the diverse range of life forms that we tend tolump together as either human or animal, there are all kinds of beings whose ‘voices’ cannotregister as ‘normal’ or even ‘human’. Cognitive disabilities, brain injuries and terminal ill-nesses can complicate the idea that all humans have the same kind of voice. And what aboutapparently ‘normal’ voices that raise difficult questions about agency and authenticity, perhapscrystallised most famously in Gayatri Chakravorty Spivak’s question, ‘Can the subalternspeak?’ And yet we might be able to acknowledge the ways that individual humans areconstructed by discourse while also listening to different forms of communication and con-sidering more complicated ways of trying to understand what various individuals situated inparticular historical and cultural contexts might need or want. It might not be such a leap,then, to consider how to respond to non-human voices that might be more difficult torecognise, beyond examples such as non-human primates communicating through humansign language. What might various individual animals in diverse circumstances and contextsneed or want? Could this kind of a question lead to more productive possibilities whenconsidering advocacy across species lines?

Johnson’s own resistance is clearly based upon her reaction to Singer’s logic in particular,which is certainly offensive enough. While Singer subsequently gives her a copy of his bookWritings on an Ethical Life, ‘so that you will have better answers to questions about animals’(2001: 222), Johnson never changes her position. But I would argue that there is furtherpotential in her work for breaking down the human/animal binary, perhaps suggestingdifferent ways in which disability and animality could be theorised more productively inconversation with each other, even if Johnson herself does not want to go there. In animagined conversation with her sister, for example, in which she imagines the best way tosummarise her thoughts after the encounter with Singer, she points out that ‘he thinks thehumans he is talking about aren’t people, aren’t persons’ (2005: 225). While that kind of


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logic can be turned toward deeply problematic attitudes, decisions and policies, it can alsosuggest that the category of ‘the human’ is a constructed one, and that there might be somepotential for coalitions in relation to those beings deemed somehow less than human, whetherhuman or not. Rather than going along with Singer, then, we can turn our attention back tothe discourses and powers that determine who is granted the category of ‘the human’ – andwho is denied it, or who can be seen as losing one’s humanity through disabling illnesses andconditions. Furthermore, and here is where we might depart more radically from Singer, wemight begin to see the basis for a different sort of coalition, a shifting, contingent and strategickind of alliance, in which advocacy might be mobilised against traditional ways of constructing‘the human’ and ‘the animal’. Biopolitical formulations of these categories maintain the capacityto render certain lives – whether human or non-human – less valuable and therefore dis-posable. As Cary Wolfe has argued, in other words,

as long as this humanist and speciesist structure of subjectivization remains intact, and aslong as it is institutionally taken for granted that it is all right to systematically exploitand kill nonhuman animals simply because of their species, then the humanist discourseof species will always be available for use by some humans against other humans as well,to countenance violence against the social other of whatever species – or gender, orrace, or class, or sexual difference.

(2003: 8, emphasis in the original)

To this list, of course, we need to add disability.2 To reject this discourse does not mean thatother hierarchies might not take its place. But we might move instead towards less uni-versalist and more specifically situated consideration of needs and wants in diverse contexts.

Towards the end of Johnson’s memoir we are given her vision for disability advocacy: ‘Fordecades, little noticed by the larger world, the disability rights movement has been mobilizingpeople from the back rooms and the back wards, along with more privileged people like me,to speak plainly about our needs’ (2005: 253). Yet this kind of advocacy would not seem tobe available to those with cognitive disabilities, for example, or non-human animals, unlesswe maintain the simple binary opposition between ‘speaking for oneself’ and ‘speaking forothers’ and say that ‘we’ should speak for those who cannot speak for themselves. Johnson’svision also insists on another key element, though: ‘We need to confront the life-killingstereotype that says we’re all about suffering. We need to bear witness to our pleasures’ (ibid.,emphasis added). At the same time, Johnson’s subsequent examples generally privilege thethings that those with physical rather than cognitive disabilities can do. While I certainlyagree that disability needs to be disassociated from only negative constructions, I am leftwondering about this other potential problem for coalition building. If we want to thinkabout better ways of putting animality and disability together, what might we want to do –

or not – when it comes to putting different forms of disability together?JAN: Mike’s last question is certainly relevant to the disability movement and its historical

problem of sustaining grand coalitions over time. The most effective American examples ofcoalition building that I can think of have been centred on particular historical moments andinitiatives, on legislation and protest, while, perhaps tellingly, the broadest Scandinaviancoalitions centre on welfare policies that affect the largest number of disabled people. In suchcases it is a matter of broadening the ranks, while perhaps not thinking too deeply aboutwhat defines the coalition.

The matter of negatives and positives is also important. Whenever the disability communitytries to define itself in terms of positive attributes, it runs into trouble, because the more


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universally ‘disability’ is defined, the more inherently it is marked by negative attributes. Thereare many pleasurable things about particular disabled lives, but the disabled life in general isanother matter.

This problem, which in disability studies is sometimes termed the problem of affirmation, isborne out in Johnson’s young adult novel Accidents of Nature. Here, Jean, the narrator, is ateenage girl whose cerebral palsy brings her to Camp Courage, a sardonically named NorthCarolina summer arrangement for children with various disabilities. The camp is very much a‘big tent’ into which kids with physical and mental impairments have been – to borrow ananimal metaphor – herded. This kind of ‘big tent’ is probably familiar to anyone who hasworked on the organisational structures of the disability field, as I once did for my PhD. Onthe one hand, there is ample room for positive identity formation and deployment of stra-tegic essentialism. A case in point would be the major Norwegian disability NGOs, whichhave used these to good effect in negotiating with the state on issues of crucial economicimportance.

On the other hand, there are great and significant differences between the people in thetent, and these differences come to the fore at crucial moments. In Accidents of Nature, thecharacter of Sara attempts resistance by staging a ‘Telethon to Stamp Out Normalcy’. Shewants to expose the hypocrisies of the adult ableist world. She wants to upend and invert itshierarchies. But in order to do so, she effectively has to form a cadre party among the dis-abled kids, which we are given to understand consists of the most intellectually capableamong them. The kids who are left out of her plans – who are given non-speaking parts,effectively – are the kids with developmental disabilities, the kids who cannot speak forthemselves in the first place. Thus, the dominant cultural hierarchies are in fact reproducedwithin the activist sphere. Historically, activism based on solid identity formation hasdepended on finding a strong voice. Sara’s great strength is her verbal dexterity, her wit, hercapacity for satire. And these are strengths – in an ableist world, according to ableist standards.This emphasis on strength – ultimately, perhaps, on particular kinds of ability – has under-pinned many conflicts, including coalition-destroying ones in the disability field.

‘Disability’ is a historically situated and socially produced category; critiquing that categoryand its oppressive functions is one of the things that the disability field tries to do. But thisdoes not solve the problem of how to build a coalition that is for something. Any definitionof the category of disability – and such definitions are inevitably problematic – must at somestage involve weakness, limitations, or lack. And acknowledgement of weakness must becentral to any kind of strategic essentialism relevant to the disability field. But these are dif-ficult concepts to embrace. And the fact that they remain makes it difficult to assert whatcomes after, or instead of, disability.

In the novel, Sara’s ‘Telethon to Stamp Out Normalcy’ borrows the tropes of ableism andattempts to invert them. Doing this, however, results in an aporia. Disabled kids play able-bodiedkids wishing that they were disabled, but the text offers no explanation of why this would be thecase, beyond a desire to be ‘like everyone else’. But if disability constitutes normalcy, even thenormate, nothing has truly changed – either in terms of valuation or in political terms.

To me, this goes to the heart of the matter. There is a case to be made both for satire andfor critique, but neither format is necessarily conducive to alliances, coalitions and progressiveadvancement. Consider this: most attempts to develop strategic essentialism in the disabilityfield have foundered on the distinction between impairment and disability. There arenumerous examples of effective strategic essentialism anchored in impairment communities,possibly because these communities can be organised around values that code as positive indominant valuation systems. In the United Kingdom, in a particular historical phase, such a


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community was the origin of the British social model. That community was also organisedaround the strategic essentialism of the identity of white male wheelchair users, particularlythose with spinal cord injury. It was organised around a particular conception of strength,which owed much to Marxist ideals of productive masculinity. It was politically effective andalso highly exclusionary.

Strategic essentialism for the disability community is, for these reasons, much more slipperyand problematic. I’ll return to the ‘Telethon to Stamp Out Normalcy’. It is notably void ofcontent. It fleetingly suggests that it is ‘the year 2030’ after ‘Cripples took control’ (2006:176). This is Sara’s utopian vision, where normalcy is stigmatised and crippledom is admired.It represents the asymmetric social relationships between Norms and Cripples, focusingattention on the micro-interactional power strategies that sustain both the smaller and thelarger camps: patronising, humiliating, shaming, silencing. But it has nothing to say aboutwhat brought the Cripples together.

In the proximate term, what brings the Cripples of the camp together is the fact that theirlives are governed in a particular way. For many kids, their lives at camp are not that differentfrom their lives at home, which may be an institution rather than a family home. Each aspectof their behaviour is closely monitored and regulated. Their bodies, however different, aresubjected to universalist regimes of control and productive power.

Solidarity and strategic essentialism, therefore, must perhaps find their loci in the biopoliticalstructures that produce the ‘big tent’ of disability. What I am not sure about is whether thismanoeuvre will result in the tent coming down, let alone what will happen if and when it does.

We know that disability is a historically contingent category. The word has a long historyin English. Its usage is tied to wars and to the actions of the state. It replaced a variety ofolder, perhaps narrower and definitely nastier words. It should, I think, be recognised as thehallmark of a particular kind of biopolitics, a particular kind of herding of a section ofhumanity. I am convinced that the concept remains necessary, but I am increasingly scepticalabout whether it can serve as a vector for any kind of useful strategic essentialism.

Essentialism and valuation hierarchies

MIKE: I might be more willing to embrace strategic essentialism in particular situated con-texts for those who are disabled and for those who are animalised, whether human or not.But I want to return to Johnson’s novel to illustrate how animality and disability can becomelinked in problematic ways, particularly when animality is naturalised as that which needs tobe tamed, even if it is the narrator’s own body.

The campers are often compared to a herd in a general sense, as they are moved around thecamp and into various activities. On their way indoors to eat, for example, we are told that ‘It islike a cattle roundup. We join the slow-moving herd inside, and I am corralled’ (2006: 31). Butthese comparisons come from Jean, not from the counsellors or administrators of the camp.

At the same time, she suggests that ‘submission’ is the ‘natural’ thing for animals to do, bethat a real animal or her own animalised body. When she goes horse riding, for example, shetells us, ‘I’m not depending on anyone. Well, except the horse, but to the horse I am master’

(ibid.: 80, emphasis added). When it comes to her own body, Jean adopts the same hope formastery, since she constructs her body as the ‘animal’ part of her that needs to be controlled.She must be ‘wrestled’ into a canoe, for example, even though she wants to go: ‘My mindtells my body to submit, don’t fight. But my body won’t give in’ (ibid.: 124). Caught like afish, perhaps, she tries to ‘enjoy the ride’, but she can only ‘dread the lift out of the canoe. Idon’t want that cute guy to wrestle me like a wild animal’ (ibid.: 126, emphasis added). Most


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disturbing, though, from my perspective, is when she later fantasises about having sex with a‘normal’ guy who seems to be forcing her animalised body to submit: ‘He dodges my pun-ches and kicks; finally he pins my legs with his legs and shoves my arms out of his way… .[and] does what needs to be done. Relief. It’s over’ (ibid.: 155–156).

Jean eventually recognises her self-loathing of her own disabled body and by the endappears to be moving towards a recognition that just trying to be ‘normal’ will no longer betenable as she looks ahead to college and beyond. The ending is perhaps debatable in termsof where the text wants our sympathies to lie: possibly with the narrator Jean and hergrowing recognition that her family will no longer be able to understand her fully, that theexperience of disability sets her apart in ways that might lead to solidarity with, if not advo-cacy for, other people with disabilities. Or should we sympathise with the fictional letter thatcloses the novel, in which Sara looks back 30 years later, only vaguely remembering Jean, butindicating that a Marxist-inspired resistance must be continued? Or both?

The point I want to emphasise, though, is that the text never questions discourses ofanimality that naturalise ‘the animal’ (including Jean’s own body) as that which needs to bemastered or tamed. This kind of logic has long been used to justify mastery over other humanpopulations that have been animalised historically, whether in the ‘peculiar institution’ of slav-ery in the United States and beyond, or through various histories of colonisation and neo-imperialism around the world. These histories might seem disconnected from questions abouteating meat, for example, and in the novel Jean has no problems with eating meat – reminis-cent, perhaps, of Johnson’s own responses to Peter Singer. But paying attention to the waysthat discourses of animality can enable discourses of disability, in which disabled lives aresomehow less than ‘human’, seems to me to be a more productive frame for advocacy. It is notthat I think that the kids at the camps should have all suddenly become vegans, but that we canrecognise the ways that animalising animals – as beings whose lives exist to be mastered, ortamed, or eaten – can also naturalise the category of the animal, which can subsequently bedeployed to construct disabled human lives as somehow lower, discardable, or disposable.Everyday suffering is too complicated to assume that all animal advocates must be vegans, or, totake another difficult example, that all disability advocates must always be pro-life. But when(not if) our own lives contribute to the suffering of other lives, or we want to advocate for ourown lives or for the lives of others, we might want to have better grounds for justifying ouractions and beliefs than simplistic binaries between ‘the human’ and ‘the animal’.

JAN: Mike’s point here invokes a fundamental problem of intersectionality, which is howcertain forms of embodied difference have historically been used to marginalise other groups.I am thinking here of how discourses of impairment and disability were often invoked tojustify the enslavement of black people, and in order to justify the repression of women. Theclassic tropes here are those of smaller brains and weaker bodies, generating discourses inwhich various minorities were framed as impaired relative to the (white male) majority popu-lation, and therefore in need of being subjected to a particular kind of control. Resistance tothis kind of control, particularly when based on strategic essentialism, sometimes came at thecost of accepting the premises of these discourses – that weakness or impairment were legitimategrounds for oppression.

This poses a problem for coalition building. I strongly suspect that an effective coalitionhas to be a coalition against something, and I do not think that ‘something’ should be PeterSinger, or any particular individual.

‘Ableist society’ may be a better candidate, but any such definition should also account forthe underlying valuation systems, that is to say for the currently ubiquitous neo-utilitarianideology that is supported and abetted by Big Data. This valuation system, which is robust


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and imperialistic, claims universal applicability while at the same time being intolerant ofvariable embodiment, subjective experience, and, ultimately, relational phenomena. It isatomistic and presupposes a universal standard of comparison, particularly for the good orwell-lived life. It is against this kind of standard that every disabled life and many animal livesare measured and found wanting. The view from nowhere, the point of view of the uni-verse, is of course a view from somewhere, a putative centre. Although clearly a modernphenomenon, adapted to and suitable for modern bureaucratic societies, this valuation systemadheres peculiarly closely to older systems like the Great Chain of Being.

My first and hitherto strongest impression of the significance of Harriet McBryde Johnson’swork arose from her description of her spine. In describing, in her memoir, her resistance tobeing surgically corrected, to finding comfort in her own skin, she articulates a biopolitics ofgreat individual specificity, in which the acknowledgement of unique subjectivity is the essentialcomponent.

This acknowledgement opens the door to a range of coalitions, though they will notnecessarily be the most effective coalitions one could imagine. The problem was pointed outquite precisely by Harriet McBryde Johnson herself: in seeking acceptance for one’shumanity, there is little to be gained in looking beyond one’s species. But if the goal is,rather, to seek acceptance of one’s vulnerability, it may be inevitable. This forces us to con-sider not only what coalitions can be built, and how, but of which valuation systems – thevaluation of various kinds of lives – they critique and which ones they aim at developing. Aswith animality studies, these issues have long been inherent in disability studies; there is everyreason to bring them to the fore.

Notes

1 For more on differences between animal studies, animality studies, human-animal studies and post-humanist theory, see Lundblad (2017). This collection also illustrates various kinds of recent work inthese fields from contributors such as Cary Wolfe, Anat Pick, Colleen Boggs and Neel Ahuja. Forearlier examples, see DeKoven and Lundblad (2012), with contributions from Wolfe, Donna Haraway,Martha Nussbaum, Frans de Waal, Temple Grandin, Carol J. Adams and Paola Cavalieri.

2 Wolfe does consider disability in relation to posthumanism in the case of Temple Grandin in his What

Is Posthumanism? (2010: 127–142).

References

DeKoven, Marianne and Lundblad, Michael (eds) (2012) Species Matters: Humane Advocacy and Cultural

Theory, New York: Columbia University Press.Derrida, Jacques (2008) The Animal That Therefore I Am, New York: Fordham University Press.Garland-Thomson, Rosemarie (1997) Extraordinary Bodies: Figuring Physical Disability in American Culture

and Literature, New York: Columbia University Press.Garland-Thomson, Rosemarie (2015) ‘A Habitable World: Harriet McBryde Johnson’s “Case for My

Life”’, Hypatia 30(1): 300–306.Haraway, Donna (2008) When Species Meet, Minneapolis: University of Minnesota Press.Hughes, Everett C. (1945) ‘Dilemmas and Contradictions of Status’,American Journal of Sociology 50(5): 353–359.Johnson, Harriet McBryde (2005) Too Late to Die Young: Nearly True Tales from a Life, New York: Picador.Johnson, Harriet McBryde (2006) Accidents of Nature, New York: Henry Holt.Jutel, Annemarie (2009) ‘Sociology of Diagnosis: A Preliminary Review’, Sociology of Health & Illness 31(2):

278–299.Lundblad, Michael (2017) ‘Introduction. The End of the Animal: Literary and Cultural Animalities’, in

Michael Lundblad (ed.) Animalities: Literary and Cultural Studies beyond the Human, Edinburgh: EdinburghUniversity Press, pp. 1–21.

Singer, Peter ([1975] (2002) Animal Liberation, New York: HarperCollins.


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Singer, Peter (1979) Practical Ethics, Cambridge: Cambridge University Press.Singer, Peter (2001) Writings on an Ethical Life, New York: Harper Perennial.Spivak, Gayatri (1988) ‘Can the Subaltern Speak?’ in Cary Nelson and Lawrence Grossberg (eds) Marxism

and the Interpretation of Culture, Champaign: University of Illinois Press, pp. 271–314.Taylor, Sunaura (2017) Beasts of Burden: Animal and Disability Liberation, New York: New Press.Wolfe, Cary (2003) Animal Rites: American Culture, the Discourse of Species, and Posthumanist Theory, Chicago:

University of Chicago Press.Wolfe, Cary (2013) Before the Law: Humans and Other Animals in a Biopolitical Frame, Chicago: University of

Chicago Press.Wolfe, Cary (2010) What Is Posthumanism?Minneapolis: University of Minnesota Press.Zola, Irving Kenneth (1972) ‘Medicine as an Institution of Social Control’, The Sociological Review 20(4):

487–504.


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10

AGENCY, STRUCTURE ANDEMANCIPATORY RESEARCH

Researching disablement and impairment

Nick Watson

Introduction

Disability studies in the United Kingdom, North America and elsewhere was founded not inwonder or out of curiosity at what it is like to be a disabled person, or to live with an impair-ment, but in anger. Disabled people were dissatisfied with the way that society treated them, andwith their prolonged and continued exclusion from the benefits of growth that had marked thepost-war years. They took exception to the growing inequality of their experience and theirlimited opportunities compared to their non-disabled peers. Importantly, this anger was directednot just at society, and the way it excluded disabled people, but also at the way that the socialsciences in general, and medical sociology in particular, constructed disability and disabledpeople. The Fundamental Principles of Disability published by the Union of the Physically ImpairedAgainst Segregation (UPIAS) in 1976 emerged in the course of a polemic against the DisabilityAlliance, which UPIAS felt was dominated by non-disabled academics such as Peter Townsend.The emergence of disability studies as a discipline saw the establishment not just of the socialmodel, but also of emancipatory research (Oliver 1992). This was part of its manifesto as it soughtto create a new approach to the study of disablement. However, as this chapter will argue, if theresearch task of disability studies is to emerge as more than evaluation of policy and practice fordisabled people, or more than sociology, social theory or policy, politics, cultural studies oreconomics with a disability theme or angle, and continue to make a contribution to the eman-cipation of disabled people, there are many practical and theoretical problems that have to beaddressed. For example, in work on direct payments or employment for disabled people, it issometimes difficult to identify meaningful research (compared with evaluation) questions. Con-cepts such as independence, mainstream and inclusion are employed but rarely fully defined. Wealso need to explore why certain things are considered worthy of research, such as the barriersfaced by disabled people, while others such as the lived experience of impairment and its role inlack of opportunity, are not. Much of disability research can tell us what we do not want and theproblems that need to be solved; research that can anticipate solutions is much harder.

This chapter seeks to explore issues in disability research, looking in particular at the relation-ship between individual approaches and social or collective approaches. It will examine how

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disability studies has sought to unpack the meaning of disability and the social relations thatgovern, condition and circumscribe the disability experience, and how they can be transformed.It will present an overview of how disability studies has developed its research agenda and whathas influenced this development. It starts out with a very brief description of the origins of dis-ability research and the emergence of the emancipatory research paradigm, the research agendamost strongly linked with disability studies and participatory research. The next section presents acritique of this approach and finishes with suggestions for further development of research ondisability, drawing in particular on the work of Roy Bhaskar and critical realism (2017).

Background: researching disability

One of the most influential texts on researching disabilities, albeit unwittingly, was EricMiller and Geraldine Gwynne’s study of life in residential homes, A Life Apart: A Pilot Study

of Residential Institutions for the Physically Handicapped and the Young Chronic Sick, first publishedin 1972. The research on which the book is based was initially instigated at the behest of PaulHunt and other residents from the Le Court Home, a care home run by the Leonard Che-shire Foundation. Hunt and his colleagues were unhappy about their lack of choice andcontrol and the denial of representation on the management of the care home. They cited theseissues when they persuaded Miller and Gwynne, two academics from the Tavistock, London,of the need for this research (1981). They hoped that the research would provide an insightinto what it was like to live in a residential institution for physically disabled people, and howit felt to be segregated from mainstream society. They wanted their perspective to be privi-leged, a perspective that they felt was lacking in much of the then available literature. Thehope was that Miller and Gwynne, as experts in group dynamics, would be sympathetic totheir desire for more control in their lives and support their wish for greater involvement inthe management of the Home. Instead, what they got was a report that, in an attempt topresent a ‘balanced’, ‘objective’ and ‘detached’ account, failed to endorse their perspective.While Miller and Gwynne argued that the institutional life was a ‘living death’ (1972: 13),rather than challenge this and improve outcomes for residents, they felt that one of the keyroles of the care home was to prepare the residents for their actual deaths. Hunt and theother residents saw A Life Apart as biased and a betrayal of their trust (1981).

Miller and Gwynne, as Marks (1999) and others have argued, adopted a similar approach,prevalent at the time, to that of many social scientists, health and social care professionals andthose from the psychology profession. They did not seek to empower those with whom theyworked, but rather to support their own professional interests. They argued that any otherconclusions to the ones they drew would not be scientifically valid and would be open tochallenge on the grounds of academic rigour. The book, and its findings, were widely disputedby many of those who lived in the care sector, and by disabled people from all around the UK.According to Barton,

Criticisms of such research included their misunderstanding of the nature of disability,their distortion of the experience of disability, their failure to involve disabled peopleand the lack of any real improvements in the quality of life of disabled people that theyhave produced.

(1992: 99)

The study became a mobilising device and played a central part in the founding of UPIAS.In The Fundamental Principles of Disablement, UPIAS laid the seeds for the social model of


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disability, when it separated out impairment from disablement. It argued that what Miller andGwynne described as a ‘living death’ had nothing to do with an individual’s impairment, butwas the result of the way that society was organised. It also created the framework for whatOliver would later call the Emancipatory Research Paradigm by arguing that:

Any scientist, seeking to deal effectively with a problem, knows that the cause mustfirst be identified. Therefore, if disability is a social condition then an analysis of theways in which society actually disables physically impaired people is obviouslyrequired before the condition can be eliminated. To persist in concentrating on theeffects, on the other hand, is to divert attention from the real problems; and in factit entrenches disability even further by seeking its remedy in the opposite directionfrom the social cause by concentrating on the assessment of the individual.

(UPIAS 1976: 13)

One of the key aims for early disability research was to establish disability as a political issue andto shift the focus on physical incapacity to the study of oppression and power (Shakespeare andWatson 2001). This, in part, was to be achieved through the emancipatory research paradigmas it sought to break the causal link between impairment and disablement. It aimed to chal-lenge the prevailing individual model of disability, which located the problems faced by thedisabled in their impairment (Barnes and Mercer 1997). Disability research, they argued, shouldreject calls for objectivity and neutrality and instead take the side of the oppressed (Becker1966). This chapter now turns to a brief discussion of this research paradigm, its emergence andhow this interplayed with that desire.

Emancipatory research

Drawing on and developing the ideas of Hunt and his colleagues at UPIAS, Oliver (1992),Barnes (1990) and others from within the field of disability studies in the UK and beyond,(Rioux and Bach 1994) changed the face of disability research. They challenged not only theway that disability itself is theorised, but also the methods employed in academic research ondisability. They argued that previous research had failed to fully capture the experiences ofdisability from the perspectives of disabled people, that it had not provided policymakers withideas that could improve the material conditions under which disabled people lived and hadfailed to acknowledge the struggles of disabled people themselves. At the root of this was thebelief that disability was a political as well as a medical or welfare issue.

Scholars in disability studies pointed to the divide between those who are researched, ‘thesubjects’, and those who research, the researchers, and the power imbalance that this creates.They argued that researchers are able to control the design, the implementation, the analysisand the dissemination of their work and highlighted disabled people’s lack of control andinvolvement in the overall research process (Barnes and Mercer 1997). This divide serves topromote an epistemology that reasserts an essentialist divide between disabled and non-disabledpeople, between the researched and the researcher. They questioned the usefulness of researchand the motives of academics (Oliver 1992; Barnes and Mercer 1997).

In a controversial and acerbic attack on research into disability, Oliver (1992) condemnedmuch previous mainstream research on disability as a ‘rip-off’. He challenged the work ofMiller and Gwynne arguing that they had failed to address the social oppression faced bydisabled people or to establish an alternative social policy that might bring about animprovement in the lives of disabled people. For Oliver, ‘disability research should not be


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seen as a set of technical objective procedures carried out by “experts” but [as] part of thestruggle by disabled people to challenge the oppression they currently experience in theirlives’ (1992: 102).

Oliver combined the ideas of Hunt and his colleagues at UPIAS with the evolving ‘criticalsocial research’ paradigm of feminist writers such as Lather (1987) and Ribbens (1990) anddeveloped a model of research which argued for an emancipatory approach. According toOliver:1

The development of such a paradigm stems from the gradual rejection of the positivistview of social research as the pursuit of absolute knowledge through the scientificmethod and the gradual disillusionment with the interpretative view of such research asthe generation of socially useful knowledge within particular historical and social con-texts. The emancipatory paradigm, as the name implies, is about the facilitating of apolitics of the possible by confronting social oppression at whatever level it occurs.

(1992: 110)

These developments mirrored similar moves in research on ethnicity, and on other oppressedgroups which emerged at roughly the same time (Truman et al. 2000).

The emancipatory research paradigm has become, after the social model, the second clarioncall of the discipline. Rules have been laid down as to what constitutes acceptable practice fordisability research. For example, Stone and Priestley (1996) identified six core principles:

1 the adoption of the social model of disability as the ontological and epistemological basisfor research production;

2 the surrender to falsely premised claims to objectivity through overt political commitmentto the struggles of disabled people for self-emancipation;

3 the willingness only to undertake research where it will be of some benefit to the self-empowerment of disabled people and/or the removal of disabling barriers;

4 the devolution of control over research production to ensure full accountability to disabledpeople and their organisations;

5 the ability to give voice to the personal whilst endeavouring to collectivise the commonaltyof disabling experiences and barriers; and

6 the willingness to adopt a plurality of methods for data collection and analysis inresponse to the changing needs of disabled people.

Similarly, Barnes (2003) in a review of emancipatory research ten years after its developmentargued that for research to be emancipatory it had to:

1 be accountable to disabled people and their organisations;2 place the social model at the heart of the research agenda;3 be politically committed to the emancipation of disabled people;4 be relevant and produce research that has a meaningful practical outcome for disabled

people.

Emancipatory research was, like the social model, optimistic and hopeful. It marked a seachange in the way disability was represented and researched. Rather than focus on how awfullife is as a disabled person, we should look at the barriers that disabled people face and howthese make that life awful.


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Towards the end of his career, Oliver (1997, 1998) became increasingly critical of theparadigm, and others such as Shakespeare (2013) and Danieli and Woodhams (2005) havequestioned its suitability as a research methodology. Despite this, emancipatory research stillholds sway in disability research today. For example, writers have argued that an emancipa-tory paradigm is still needed and that it facilitates the use of innovative research methods(Hodge 2008), ensures that research is accessible (Garbutt 2009) and accountable (Chown et

al. 2017. It is not the only research paradigm to emerge from within disability studies, and itis to a discussion of participatory research, which is often confused with emancipatoryresearch, that this chapter now turns.

Participatory research

Participatory research, sometimes referred to as inclusive research, action research or co-production has also been a key methodological approach to disability research, particularly inresearch with people with a learning disability (Strnadová and Walmsley 2018). The aim ofthis research paradigm is to include people in research as more than just subjects or objects ofresearch and give them voice. Walmsley (2004) traces its origins back to the work of MargaretFlynn (1986) and Dorothy Atkinson (1989). These women were among the first researchersto actually include the testimony of people with a learning disability in their research and todocument the methodological implications of their testimony. While participatory researchhas been seen by some as part of the move towards emancipatory research (Zarb 1992) othershave argued that its use reflects the difficulty of realising emancipatory research with peoplewith a learning difficulty (Strnadová et al. 2016; Walmsley 2010).

Stalker has outlined three main assumptions that are common to both emancipatory andparticipatory approaches to research:

[F]irst, that conventional research relationships, whereby the researcher isthe ‘expert’ and the researched merely the object of investigation, are inequitable;secondly, that people have the right to be consulted about and involved in researchwhich is concerned with issues affecting their lives; and thirdly, that the quality andrelevance of research is improved when disabled people are closely involved in theprocess’.

(1998: 6).

In participatory research, the actual process of research is seen as more than just a means ofcollecting data – taking part in research becomes a source of validation for those who parti-cipate in the research (Strnadová and Walmsley 2018; Reason and Heron 1986). Opinionsvary widely on what constitutes participatory research (Strnadová et al. 2016).

Participatory research has been criticised by those within disability studies for reinforcingthe researcher/researched divide and for failing to challenge, confront or change oppressivestructures and practices. Why, for example, do participatory researchers refer to those theywork with as co-researchers? Liddiard et al., for example, refer to the young people whowork with them as their ‘co-researcher collective’ (2018: 6), clearly marking them out asdifferent to the academic researchers in the team. Participatory research has also been criti-cised for its potential to open up those who are researched to even greater surveillance(Baistow 1994).

Having examined briefly the main ideas that have driven disability research during the past20 or so years this chapter now moves on to address some of the problems with research on


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disability. The structure of this next section draws heavily on a paper published by MikeKelly in 1989 called Some Problems with Health Promotion Research and the debt owed to thatpaper is acknowledged here.

Some problems with disability research

Under the emancipatory research paradigm disability research is forced to adopt an idealistic,ideological and programmatic approach. The focus of disability research is on identifying,challenging and removing the barriers that disabled people face. It is about ensuring thatdisabled people have equal access to housing, income, education, employment, social justiceand equity, for example. The principal means of achieving these are, as Oliver (1990), Barnesand Mercer (2010) and others make clear, political. It requires a shift from a focus on theindividual or medical to a structural analysis. The problems faced by disabled people must besolved through the development of appropriate policies that allow for enablement throughwhich disabled people can reach their fullest potential. Anti-discrimination legislation, whichaims to remove the barriers faced by disabled people, is seen as central to any such approach. Sotoo are the ideals of the Independent Living Movement, with disabled people having thesame freedom, choice, dignity and control as other citizens at home, work and in thecommunity as their non-disabled peers (Morris 2006).

Much of the early work in disability studies sought to highlight and provide evidence forthe multiple and significant social inequalities that exist between disabled and non-disabledpeople and the systematic and institutional discrimination they face in their day to day lives(Barnes and Mercer 2010). Importantly, the emancipatory approach is not centred on theexperiences of individuals, or groups of individuals, or the ways they behave. It is about therelationships between individuals and groups as it seeks to unpack the relations of oppressionand exclusion experienced by disabled people. Emancipatory research seeks to move beyonddocumenting these discriminatory practices, power relations attitudes and structures; it isabout working with disabled people and aiding their politicisation and mobilisation andproviding evidence for altering the status quo and pointing hopefully to some future betterstate. It involves determining the explanatory structures and mechanisms that account fortheir exclusion and oppression.

These aims are, of course, worthy and important and are hard to disagree with. However,they do create problems and their sheer scope make the translation of such ideals into aresearch agenda problematic, as Oliver has acknowledged (1997, 1999). The approach prohibitsthe study of issues that cannot be defined in these relational terms, as well as those those thatare experienced at the level of the individual. Issues around the impact of impairment onpeople’s day to day lives, and the way they intersect with other social locations are difficult tounpack. Furthermore, they make a huge demand for disability-related research across a widevariety of domains. The question posed by Barnes and others writing about discrimination iswhether disability studies can meet the demands of research across all these disparate areas.

The next section of the chapter focuses on three key problems with emancipatoryresearch: difficulties inherent in translating ideals into research questions; the role of socialscience in emancipatory research; and the involvement of people in the setting of priorities.

First, the ideals and demands of the disabled people’s movement, such as the removal ofdisabling barriers or the right to independent living, do not translate easily into researchquestions. Concepts such as inclusion and mainstream are widely used terms, but like manysuch concepts within the discipline, they are neither well defined nor well established. Theymean different things to different people, and there are no measures or metrics to define


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them. What exactly do we mean by choice or freedom? How, for example, do we includechildren with specific learning disabilities who are fearful of inclusion (Watson 2002). Con-cepts such as mainstream, rights and independence are ‘conceptually confused’ and as Rapley(2003) and Johnson and Walmsley (2010) have argued form a poor basis for both researchand campaigning. This problem is perhaps best highlighted by research carried out in theearly 1990s by Barnes and Zarb as part of the ‘Measuring Disablement in Society’ project.This project aimed to provide a systematic empirical analysis of the barriers faced by disabledpeople. It ran into numerous difficulties partly because of this lack of conceptual clarity, asBarnes (1995) and Zarb (1997) acknowledged. Barnes concluded that while physical access,for example, can be measured, other issues such as prejudice and attitudes, which Thomas(1999) later came to term psycho-emotional disablism, cannot be measured. The individualexperiences of disablism are not reducible to the material. The research bracketed differencesfound between various groups of disabled people, and the intersection of disability with, forexample, ethnicity, sexuality, gender, and the ways disabled people experience capitalismwhich were also difficult to identify.

Emancipatory research has the potential to become a self-fulfilling prophecy and there is adanger that disability research stops looking at what people are saying, looking instead forevidence that supports the social model. Finkelstein, for example, argued that unless the focusof research is on ‘dismantling the real disabling barriers “out there”’ a ‘discredited and sterileapproach to understanding and changing the world’ is produced (1996: 34). He suggestedthat any other approach diverts attention from the causes of disablement, confining politicalaction to personal experience and preventing disabled people from forming alliances withother oppressed groups (ibid.: 36).

Second, disability studies encompasses the whole range of the social sciences and beyond.Other social and political scientists do, of course, write about disability and disabled people, andthe question is what defines disability studies research and how does it differ from otherapproaches in sociology and politics? Furthermore, if sociologists and other social scientists cando this, is there any special need for disability studies? There is much debate within disabilitystudies about what constitutes the subject, as Goodley (2016) has recently argued, and there is adanger that we reject some of these important ideals out of hand because they do not followthe tightly held beliefs laid down by the emancipatory research paradigm.

Third, while participation by disabled people is held up as a cornerstone of disability studies,the obvious question is to what extent have disabled people been consulted in the setting up ofpriorities put forward in disability research? In short, the answer is they have not, and insteaddisability scholars and activists have assumed that role (Kitchen 2000). This problem is furtherexacerbated by the fact that it is difficult to define who disabled people are; many people whoare disabled do not see themselves as disabled (Watson 2002) and many people who, in theUK, are protected under the Equality Act on grounds of disability do not consider themselvesdisabled (Hurtsfelt et al. 2004). The Equality Act, as well as other anti-discrimination legislationsuch as the Americans with Disabilities Act, now include cover for people with cancer, but aresuch people part of the disability community? Many people will be discriminated against, andmany will be disabled in the social model sense, but have they been consulted about thedisability research agenda? This problem links to the previous point on the broad nature ofdisability research. In his critique of disability studies, the medical sociologist Mike Bury (1996)asked where the divide between chronic illness ends and disability begins, a question that hasnot, to date, been addressed or answered. We need, as a discipline, to answer this question. It isnot enough to just finesse it by simply referring to the social model. Setting the criteria forresearch and deciding on the priorities and obtaining consensus from the disability community


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is a difficult task, and there is a danger that this has become lost in definitions of whatconstitutes disability and disability research and how disability research is conducted.

These three problems are expanded and further developed in the next sections of thechapter where the focus is shifted to examining how research can produce change and therelative roles of structure and agency.

Change, development and improvement

With its focus on barrier removal and the emancipation and empowerment of disabledpeople, emancipatory research has to aim to be transformative. The role of the researcher isto establish a research agenda that can help to realise improvement for disabled people(Barnes 2003). This focus on change, development and improvement assumes, of course, thatresearch can identify changes to include disabled people, that researchers have the capacity togenerate such an agenda and that such changes are always desirable. It assumes that we cantackle the exclusion and oppression that disabled people face simply by social change and thatthe focus of research should be on the means of achieving that social change. On the face ofit, this argument is not unreasonable, and may even be self-evidently true.

There are, however, important researchable issues here. The social model is, at its roots,normative; it implies judgements of good and bad, of what ought and what ought not to be(Vehmas and Watson 2016). This normative dimension is barely acknowledged and unless it is,linked as it can be to the Marxian idea of false consciousness, it has the potential to be seen asbeing illiberal and paternalist. The approach can silence those who do not support its under-lying principles (Danieli and Woodham 2005). The right to intervene on, for example, anindividual’s housing, employment or educational opportunity is a political decision and howthese decisions are made and who makes them are themselves researchable questions. Anotherlarge, unresolved problem is that while certain discriminatory practices can be removed orblocked, it is sometimes difficult to think of or find less discriminatory or oppressive factors toreplace them with. For example, in promoting access to work it is often difficult to see howbarriers to employment for some disabled people can be removed to enable participation. Thishas led to what Abberley (1996) termed the utopic ideals of the disability movement.

Disability studies has also, to a large extent, ignored research on changes in behaviour orattitude. The idea of changing behaviour and attitudes to disabled people, and through thischanging the social and physical environment, should be an integral part of disability studies,but it is one that is rarely approached. Reeve’s (2004) work on psycho-emotional disablismhighlights how detrimental imagery, cultural representations and interactions with others canbe for disabled people. This neglect comes against a backdrop of many campaigns such as the‘See Me’ campaign which have tried to tackle the stigma associated with having an impair-ment (Pilgrim and Rogers 2005). The assumption within much of the writing on disabilitystudies has been that such psycho-emotional disablism can be challenged through a socialmodel approach. There has been no attempt to unpack or examine the models of social orbehavioural change that may be operating. Concepts such as Intergroup Contact Theory,which seeks to explore how interpersonal contact between different groups can lead to areduction in prejudice and discrimination, are not examined (Pettigrew and Tropp 2006).

Social change involves self-change. It is not possible to emancipate others; emancipationalways has to include, or at least involve, self-emancipation (Bhaskar 2016). Change is notjust about removing barriers, it involves individual agency; it is a complex, relational processand it lies at the interface of structure and agency. There has to be some exploration of theway that people respond to structures and the impact that these have on their sense of self


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and the narratives they construct to explain them. The structures that disable remain the coretheme of emancipatory research, rather than individual behaviour, or the capacity to challenge oralter those structures. It is to an examination of this that the chapter now turns.

Agency-structure problem

The agency-structure debate has been at the centre of social science research since its incep-tion (Carter 2003). In its analysis of the disability problem, disability studies has to a largeextent ignored agency and, driven by the social model, has argued that disability can only bechallenged through changes in structure. There is a danger that in this approach, agency hasbeen removed from disabled people, and that they have again been presented as victims,albeit this time as victims of society rather than as victims of their impairment. Disabledpeople are active agents and are able to challenge the structures and practices that disabledthem. Simulation exercises, for example, in which people are blindfolded or placed inwheelchairs so that they can experience what it is like to be a disabled person, have beenrightly criticised because they do not allow for individual agency. All they do is reinforce theidea that life as a disabled person is unbearable (French 1992). However, agency, the way thatdisability and impairment become part of people’s everyday lives and the strategies theydevelop to challenge this, is rarely part of the research agenda.

The disabled people’s movement has long recognised that the ideas of empowerment andenablement lie alongside anti-discrimination policy in tackling the discrimination experienced bydisabled people. Many of the debates within the discipline straddle this agency and structuredivide yet this has rarely been theorised. The Independent Living Movement (ILM) forexample, while emphasising disabled people’s right to make decisions about their lives as wellas their right to participate fully in the mainstream community and to live on an equalfooting with their non-disabled peers, also places great emphasis on the development of skillsand knowledge that allow individual disabled people to exercise these choices (Morris 1993).Providing people with the knowledge and power to act and take control enables people toexpress their agency and at the root of this is the possession of the skills necessary to facilitateempowerment (Kelly and Glover 1987).

Despite the recognition by the ILM that there is a need to help disabled people to developknowledge about their rights to housing, to employment and to funding for personal assis-tance, disability studies has, to a large extent, ignored another major area of knowledge – theright to knowledge about one’s own body and health care. To do so is perhaps dangerousbecause it does acknowledge that disabled people do have health problems and that issuesthat may concern disabled people may at times be individual in origin. However, to denyresearch attention to such areas will surely only collude in further exclusion. Ignoring ordownplaying these very real issues can pave the way for the development of reactionaryideologies or programmes (Birke 1986).

By not engaging with health at this level and by not taking on health as an issue, disabilitystudies has allowed to emerge unchallenged programmes such as Kate Lorig’s Chronic DiseaseSelf-Management Programme (2006) and the Expert Patient Programme, also developed fromthe work of Lorig and based on ideas developed at the Stanford Patient Education ResearchCentre. These programmes fail to engage with the disability studies agenda. The underlyingphilosophy of these and other similar courses is the promotion of self-efficacy. Disabled people,they argue, can be best helped by encouraging self-management, whereby individuals aretaught to live with their conditions and are given the confidence to deal with health serviceprofessionals. They are also instructed about role management and the emotional management


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of their conditions. The programmes aim to shift patients from being passive recipients of careto agents who are actively involved in their care. It is about empowering participants to takeresponsibility for the management of their conditions and to work in partnership with healthand social care professionals and thereby to take greater control of their lives. Typically, thecourse content includes sections on disease-related problem-solving, managing emotions,exercise, relaxation, nutrition, communication skills, as well as advice on managing medicationsand using the health care system (Richardson et al. 2007).

These programmes individualise the problems that disabled people face. They are verymedical in their outlook, with a focus on symptom management and self-efficacy, and theypresent disability as a medical rather than a social issue. However, to a large extent they ignorethe wider determinants of health (Taylor and Bury 2007). There is no attempt to unpack orexplore the powers that have created the oppression in the first place.

There is also an inherent contradiction in that by deciding that disabled people are inneed of, or would benefit from, research that aims to promote their emancipation, theresearchers have already decided that disabled people have special problems and that theyare in need of assistance. The reasoning behind the very establishment of such a projectmay be at odds with its intentions (Kelly 1989). By adopting a structural solution, theemancipatory paradigm presupposes the source of the problem and denies disabled peopleindividual agency and their interpretation of the problem. This of course does not meanthat disabled people are right and those adopting a structural perspective are wrong, but byprivileging materialist accounts the relational aspects of disablement are ignored. The studyof such a tension, as Kelly (ibid.) argues, is important, not because it allows a sociological ortheoretical examination of the agency/structure debate, but because it allows for anexploration of how involved disabled people are in the assessments of need and demandand in the development of appropriate organisational responses. The agency-structuredebate therefore has a strong practical application and disability studies must develop waysof engaging at this level.

To provide a more complete picture of the disability experience, research has to exploreand examine the interface between agency and structure and this tension should be built intoresearch questions. It is to an examination of such an alternative research paradigm that thischapter now turns.

Critical realism: an alternative approach to disability research

This chapter has argued that, despite its good aims and intentions, there are problems withthe emancipatory research agenda. By focusing on the structures that disable, the agendabecomes skewed and some of the key problems and issues faced by disabled people can bemissed. It is not able to theorise how change can be achieved or even, at times, what suc-cessful change would look like. While disability scholars talk about inclusion or indepen-dence, for example, no metric or indicator exists to measure what good inclusion orindependence might mean. There is no space to explore individual agency or to unpack itsrole in emancipation. A desire to develop a research approach that privileges emancipation is,of course, an important political rhetoric but, no matter how engaged it may be, this cannotbe used to justify a theory. To do so would be a teleological error. Research on disabilityneeds to be both politically engaged, so as not to return to the earlier approach so rightlycriticised by Hunt and his colleagues at UPIAS, but it also needs to allow for an exploration ofchange, of agency and of individual experience. If the research starts out with a pre-existing


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commitment to a particular understanding, it will prevent reflexivity and an exploration ofhow and who defines and controls the research questions can become blurred.

Drawing on the ideas of Bhaskar (1997, 2016) and others (Archer et al. 1998; Sayer 1999;Williams 1999; Scambler 2005, 2018; Pilgrim 2014) this section argues that these aims can bebest achieved through the use of critical realism. This permits the incorporation of a structuralanalysis while simultaneously conceding the central role played by agency. An emancipatoryproject has to both define the subject, in this case disabled people, their possibilities andcapacities, and the layers that deny or suppress them (Bhaskar 2016). It involves unpackingthe ‘social processes of structure and agency that shape and reshape one another over time’(Williams 1999: 809). It is about exploring how agency is influenced by structures and viceversa, without overemphasising either agency or structure.

A critical realist agenda enables us to move beyond debates about what is disability andhow is it best defined, what is, or is not, an impairment and what is the relationship betweenimpairment and chronic illness and disablement. It also permits an examination of theexperiential basis of impairment and an exploration of the day to day problems associatedwith living with a condition without reducing the disease or condition to a social construc-tion or creation (Scambler 2005). By ‘bringing the body back in’ (Williams 1999) and theo-rising impairment and its lived experience as part of human embodiment it facilitates thereclamation of impairment, which under the emancipatory research paradigm is left tomedicine (Hughes and Paterson 1997). By focusing on the barriers faced by disabled peopleas well as individual agency, critical realism allows for an approach which accords appropriateweight to the different dimensions of the disability experience (Shakespeare 2014). It alsofacilitates an engagement with different methodologies, including quantitative and qualitativeapproaches. By combining epistemology, ontology and, importantly, normativity, it providesan analysis that can accommodate material causation and, at the same time, a critical analysisof the way that people with impairments are treated without recourse to the reductionisttendency found in either the individual or social model.

A critical realist approach entails the identification of causal mechanisms, or structures, thatdetermine social outcomes through rational judgement. It is theory driven, but not theory laden.This is combined with an exploration of the ontological (Archer et al. 1998). This enables a cri-tique of social conditions while pointing the way forward to policy recommendations andactions. It achieves this through what Bhaskar has termed levels of scale (2016 56). He suggestsanalysing at seven levels:

i The sub-individual: the psychological, exploring attributions of motives and reasons foraction.

ii The individual: the biographical and the narratives people construct and reconstruct aboutthemselves.

iii The micro: the way that people interact with each other, the social rules and norms thatconstruct our daily lives and how relations in public are governed.

iv The meso: the relations that exist between functional roles, capitalist and worker, carerand disabled person.

v The macro: understanding the functioning of whole sections of society, for example,people with a learning disability.

vi The mega: tracing and analysing whole traditions or formations such medicalisation orcapitalism.

vii The planetary: the geohistory of humanity and the ecological.


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Medical sociology has tended to focus on the first three, while emancipatory research hasplaced emphasis on the meso, the macro and the mega. All of these layers are essential to anunderstanding of the phenomena in fields such as disability research. (Bhaskar 2016: 289). Welive our lives in interacting and interarching spheres, processes and procedures which intersectsimultaneously, and it is this that critical realism allows us to access (New 2005). At the levelof the individual, fatigue, pain and impairment can contribute to exclusion, an exclusion thatcannot be extracted from the overall experience of disablism. But the role of disablism is alsocentral. All these levels intermesh, interrelate and interplay and need to be examined if weare to develop an approach that fully incorporates the lived experience of disablement andimpairment and avoid both ‘biological reductionism’ and ‘contextual essentialism’ (Shakespeareand Watson 2010).

Few would dispute that the macro and the mega are an important determinant of thecultural and sociopolitical life of disabled people, but they are only part of disabled people’slives. They interact with and fashion narratives at the level of the individual and the microthat in turn relate back to the meso, macro and mega. It is a dynamic relationship. In researchterms, this approach allows us to start with disabled people at the centre, and to examine theactivities they engage in, why they engage in them, or why they think they engage in them asthey construct or sustain social practices, structures and relationships. Importantly, it alsoallows for reference to the material and structural and how these are conceptualised. It allowsus to move beyond an approach that privileges either the individual or the social and produces afuller, more accurate account of disability and the lives of people who are disabled.

Note

1 It is important to note that Oliver’s attack is an attack on both positivist and interpretivist research.

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PART II

Disablement, disablism andimpairment effects

11

DEAF IDENTITIES INDISABILITY STUDIES

Jackie Leach Scully

Many disabled people see Deaf people as belonging with them outside themainstream culture. We, on the other hand, see disabled people as ‘hearing’people in that they use a different language to us, from which we are excluded.

(Ladd and John 1991: 15)

As is now widely acknowledged, and as the quote from Ladd and John indicates, disabled and D/deaf people1 can have quite divergent views about the place of deafness within disability. In thischapter, I want to look at how the experiences of deafness are contained, or not, within disabilitytheory. There are several reasons why the particularities of deafness might be of interest to theacademic understanding of disability in general. First, the question of where to place deafnesswithin the spectrum of physical variation does not have a simple answer, and that alone makes itworth a closer look. But, second, the fact that situating deafness within disability theory is pro-blematic points to the persisting inadequacies of our thinking about disability and impairment as awhole: deafness tests the coherence of current disability theory, and frequently finds it wanting.

The areas that have seen the most debate concern the ontological status of deafness and, byimplication, of disability, and its normative status, or whether being deaf can ever be anythingother than ‘damaged’. In real life, beliefs and claims about ontology and normativity are playedout through beliefs and claims about identities. In this chapter, then, I focus on questions of deafidentities and identifications as they lie at the heart of disability theory’s difficulties with deafness.First, I consider how disability theory has approached the idea of disability identity. Then, Iexamine why deafness might need to be considered differently, especially in view of the existenceof the Deaf community and the processes through which it has been formed. I look at the emer-gence of the model of ‘Deaf culture’, which has been profoundly important to the evolution of astrong Deaf identity, but also question whether the model is able to incorporate the genuinediversity of deaf experiences. Finally, I argue that deafness and disability may better be examinedin terms of phenotypic variation, rather than social structures or cultural identities.

The contested idea of disability identity

There are well-rehearsed accounts of the evolution of different models of disability, especiallythe rise of what has been called the (bio)medical or individual tragedy model, to the

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development of the strong social model from the 1970s onwards, and I will not repeat themhere (e.g. Barnes et al. 1999; Campbell and Oliver 1996; Shakespeare 2006; Oliver 2006;Thomas 2007). All models of disability indirectly provide a concept of the relationshipbetween disability and either personal or collective identity, differing in the extent to whicheach model configures disability as either constitutive of or damaging to an ‘authentic’ per-sonal identity, or whether it sees disability as a possible basis for a political identity (Swain andFrench 2000; Scully 2008).

Contemporary identity politics organises around the idea that marginal groups have beensubjected to injustice because of unique features that mark them out – so the group’s membersmust share some features to start with (Kenny 2004). Hence a frequent objection to the notionof a collective disability identity, whether taken in a political or in a broader sociocultural sense,is that it is simply meaningless because there is a lack of consensus within disability theory aboutwhat constitutes disability, and if we cannot say what disability is, how can we identify whatdisabled people might share as identity-forming? A medical/individual tragedy model, forinstance, would see impairment (the physical or mental deviation from an accepted norm) asthe common feature. The problem here lies in unambiguously defining physical or mentalnormality and providing a compelling reason why it should be this and not something else. Forthe strong social model, on the other hand, the common feature of a disability identity is notthe nature or extent of the impairment, but the political experience of oppression (Oliver 1990;Barnes 1996). At this point, second wave disability theorists are inclined to express some scep-ticism that oppression is really that all-encompassing or ubiquitous (Crow 1996; Shakespeareand Watson 2001; Watson 2002; Shakespeare 2006). Disabled people, they say, undergo awide range of experiences as the direct result of their impairment, and some identity-formingexperiences may better be described as exclusion, rejection or isolation, or may actually bepositive rather than negative. If the expression of oppression is not universal, then it cannot bethe basis of a general theory of disability.

Thinking about disability in terms of identity is also contested because of the lack of agreementabout its normativity. By this I do not mean the moral or political status of disabled people, butthe question of whether disability is intrinsically always problematic, a state that is something lessthan ideal, or whether it only becomes a problem if other factors operate as well. (This is whatdistinguishes disability from analogous categories of gender, class or race. Theories of gender, classor race are not theories of a problem; but some theories of disability are exactly that.)

As a result, not everyone is convinced that disabled people share enough elements ofexperience, and enough sense of fundamental difference from non-disabled people, for any

kind of meaningful shared identity to exist. There may be an identification with others withrelated impairments, especially if they also share experiences of special schools, clubs, clinics andso on, but this is not something that is shared with all other disabled people. What empiricalevidence there is suggests that disabled people’s own sense of common identity is quite varied:while some consider themselves part of a disability community or political movement, othersmay reject any notion of there being such a community at all, or acknowledge its existence butstill assert that they themselves are not part of it (see Watson 2002; Ville et al. 2003).

Yet notwithstanding these theoretical and empirical problems, some disabled people anddisability scholars do hold that there is something about the experience of disability that isdistinctive enough to speak meaningfully of a disability identity (Peters 2000). Ultimately,there is also the pragmatic observation that collective self-identification around the idea ofdisablement has probably been the key driver of improvements in the social and economicstatus of disabled people over the last half-century. When Vic Finkelstein asks rhetorically,‘why now, when there is much greater awareness of our desire to be fully integrated into

Deaf identities in disability studies

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society, do we suddenly want to go off at a tangent and start trying to promote … ourseparate identity?’ he answers it by saying that having ‘a cultural identity will play a vital rolein helping us to develop the confidence necessary for us to create the organisations which weneed to promote the social change we want’ (1996: 111). Overall, then, disability identityremains a concept that is contested, troublesome and yet still extremely useful, both theore-tically and practically.

Deafness and why a D/deaf identity might be special

The concept of deaf identity is equally contested and troublesome, but for rather different rea-sons. Deafness is understood by the majority of hearing people, and by many deaf people aswell, as a purely audiological state in which someone’s range of usable hearing is significantlymore restricted than that of most other people. Having a hearing capacity ‘below the norm’ isclearly an impairment, and for those who take this view it will seem obvious that to be deaf isto be disabled and that deaf people are part of the disability community. If there is a collectivedisability identity to be claimed, then deaf people can and should claim it.

The extraordinary strengthening of a distinct self-consciousness and politicisation among deafpeople since the 1980s, especially among the signing, culturally Deaf community, challengesthis. An increasing number of people – primarily members of the signing Deaf community, butsome other deaf and hearing people as well – now argue that being deaf has little in commonwith other impairments like being blind or having constrained mobility. Instead, they see deafpeople as occupying a distinct ‘Deaf world’ or as members of ‘Deaf culture’ (Corker 1996;Padden and Humphries 2005). The term culture is used to capture the distinctive beliefs andpractices of Deaf people that have been shaped by the dominance of visual over auditoryinteraction with the world. Although ‘the central role of sign language in the everyday lives ofthe community’ (Padden and Humphries 2005: 1) is taken for granted, Deaf culture is not justabout a peculiarity of language form; it refers to a rich background of distinctive social prac-tices, a shared past and a network of social organisations ranging from schools for the deaf andD/deaf social clubs, to today’s virtual D/deaf groups operating online and through video blogs.While similar institutions exist for other kinds of impairment, for example schools for the blind,claims to a distinct community or culture have never been made for these impairments in theway they have for Deaf people.

The existence of Deaf culture is far from universally accepted, and even its proponentsagree that it differs in important ways from other linguistically and ethnically based culturesto which it is compared. A culture that arises out of the fact of deafness is one that for muchof its history was, and for the majority of people still is, premised on a fundamental defect.This is not the case for cultures generated through geography or language. If deafness is pri-marily about audiological impairment then it cuts right across spatial or linguistic borders,again unlike other cultural identities. However, the view that defect provides the basis ofDeaf culture is rejected by those who see it as emerging from a more complex interaction oflanguage difference and social marginality, not just because of ears that do not work likeother people’s.2 As Padden and Humphries say, ‘Being Deaf [is] not a consequence of nothearing. Being Deaf [is] an existential experience, complete in itself and not a consequence ofbroken bodies but the outcome of biological destiny’ (2005: 156). By this view of Deafculture it is closer to some other cultural identities that have also arisen because of languagedifference and exclusion from mainstream society. Additionally, this model is open to theway that the experience of Deaf culture is not universal but is inevitably modulated by other


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cultural identities and identifications with which it interacts, such as ethnicities (see forexample Foster and Kinuthia 2003; Smiler and McKee 2007).

Deaf culture is also unusual because of the processes through which it is handed on in thecommunity. Most cultures are transmitted vertically, from parent to child. For Deaf peoplethis happens relatively rarely, when both parents have the same genetic basis for their deafnessand therefore have a high probability of having deaf children. Because most hearing impair-ment is not genetic, in over 90 per cent of cases deaf children will have hearing parents(Nance 2003). Transmission of audiological deafness, and so of Deaf culture, are thus bothusually disrupted in each generation. While Deaf families are rare, they have been peculiarlysignificant within the Deaf world, providing a repository of cultural knowledge to pass on todeaf children from hearing families (Preston 2001: 71). In the past this led to the sociologicalnovelty that the chief conduits for Deaf identity were institutional, such as schools for thedeaf or Deaf clubs (Harris 1995: 121–140), rather than familial, and there is anecdotal evi-dence that until quite recently Deaf people would tend to name their school as the point ofentry into their self-identification as Deaf, as the place where they ‘came from’.3

The identification of culturally Deaf people with the Deaf world and Deaf culture isundoubtedly strengthened by the fact that even today, for most deaf people, the Deaf worldis a found community. Many Deaf memoirs are structured around a narrative of ‘cominghome’ after years of isolation and frustration because of the impossibility of hearing speech. Inaddition, the dispiriting history of ‘oralist’ attempts to suppress signed languages and toencourage/force deaf children and adults to communicate through speech instead has also,paradoxically but predictably, fostered a strong group identity in response (Lane 1984).

The ‘biological destiny’ that Padden and Humphries mention is an audiological difference.The question of the normativity of D/deaf identity depends on whether this is considered animpairment, or alternatively as a difference falling within the range of normal human varia-tion (Padden and Humphries 1988, 2005). When Ladd and John say that ‘Labelling us as“disabled” demonstrates a failure to understand that we are not disabled in any way withinour own community’ (1991: 14–15) they reflect the view that, at least in that context, Deafpeople can acknowledge that they embody a physical difference from the norm, withouthaving to consider themselves to be impaired (Lane 1992; Harris 1995). This stance is distinctfrom the strong social model of disability, which would still view audiological deafness as animpairment while arguing that the disablement of deafness is caused by communication andother barriers that prevent deaf people participating fully in society. By contrast, some(although by no means all) culturally Deaf people prefer to think of their audiological deaf-ness purely as difference, or at most a trivial impairment, rather than a significant problem.While the available evidence suggests that this is a minority stance within the adult deafpopulation, it is also true that the group that Corker called the Deaf elite, ‘deaf people …

who distance themselves from notions of deafness as hearing impairment and disability’(1998: 6), has been extremely influential in transforming the sense of self-conscious identity,and outsider perceptions, of deaf people.

The deaf community: boundaries and diversity

It is worth repeating here that, just as with disability identity, the various concepts of D/deafidentity, culture, world, community and so on are all contested ones. Some people, includingsome deaf people, reject the idea of a (relatively) homogeneous Deaf culture; other deafpeople will agree that it exists but do not see themselves as belonging to it, and others willconsider themselves fully paid-up members. There remains considerable debate about what a


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‘Deaf culture’ actually is, what its boundaries are, who belongs to it or can claim to belong to it,and why (Padden and Humphries 1988; Corker 1996, 1998; Lane 1992; Woll and Ladd 2003).

What makes it harder to provide definitions of or to delineate boundaries around Deaf cul-ture is the growing diversity of members or potential members of the deaf community.4 AsPadden and Humphries note (2005: 150), in the 1950s the question of ‘who is deaf?’ was easilyanswered: ‘Deaf people are those who attend schools for the deaf and go to Deaf clubs’. But bythe 1970s these distinctive spaces for affirming deaf identity were in decline, and the moreabstract notion of Deaf culture called for a socially and culturally detailed account of whatconstitutes deaf identity. And this in turn raised unprecedented questions about the kind of deafidentity that could be considered an authentic part of the community and of Deaf culture. Ifdeaf people are not defined by the pragmatic criteria of schools or clubs, or according toaudiological status or the age at which they became deaf, what exactly are the criteria forbelonging to this community? Are certain experiences, leading to a particular sense of self,absolutely necessary? How many ‘different pathways of experience’ (ibid.: 155) can be inclu-ded? If deaf people undergo a variety of different experiences, which are the most formative interms of Deaf identity? And who has the authority to define which kinds of D/deaf identitiesare authentic? Inevitably, this leads to the question of just how much diversity of experience,identity and identification the idea of deafness as a culture can tolerate. Diversity within asupposed coherent group may be feared as being equivalent to fragmentation, compromisingthe group’s claim to the outside world to be recognised as a group.

Mairian Corker was one of the first scholars to subject the cultural processes at work in theestablishment of a ‘Deaf identity’ as part of a ‘Deaf culture’ to critical scrutiny, and was parti-cularly alert to the consequences that the need to articulate a coherent Deaf identity could havefor the real-life diversity of deaf experiences. In her discussion of how novel social, cultural andpolitical identities are generated, she notes the general tendency to set up a binary oppositionbetween those inside and those outside the group, to define oneself over and against the other‘in order to justify the creation of a different concept of “purity”’, with the risk of ossifying theboundaries between identities that might in reality be more fluid (Corker 1998: 22). In the caseof deafness, Corker is concerned that constructing Deaf identity in terms of a cultural minorityencourages the rigid dichotomisation of experience into just two categories of deaf and hearing,inside and outside the group. If this taxonomy is maintained too rigidly there will be no placefor the experiences that fall outside it (Appiah 1994).

When drawing the boundaries of deaf identity, it might seem axiomatic that the first line to bedrawn is between deaf people and hearing people. But the simplicity of this is deceptive. Wehave already seen that there is basic disagreement over whether the ‘deafness’ that matters tobeing part of Deaf culture is a primarily audiological or a sociocultural trait. The audiologicalcriterion appears to be more straightforward and objectively measurable. Yet even then, if ‘deafpeople’ is taken to include everyone with any kind of not-quite-standard-model hearing, thatlabel must still encompass the distinct experiences and identities of:

� people who consider themselves fully culturally Deaf, notably those who have been bornor raised within Deaf families, and who often (but not always) use signed languages astheir primary means of communication;

� those culturally Deaf people who identify themselves as having an impairment, and thosewho reject the idea that they are in any way impaired, except by social barriers and attitudes;

� culturally Deaf people who are happy to use hearing aids or cochlear implants (CIs), andthose who reject them as unnecessary or even as threats to the integrity of their identi-fication as Deaf;


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� partially deaf, hard of hearing, and late-deafened people, who continue to identify them-selves as hearing people with an impairment, who function primarily in the phonocentricworld (Corker 2003), and who depend to a greater or lesser extent on the technologies ofhearing aids or CIs rather than using sign and non-auditory supports in their daily lives;

� partially deaf and late-deafened people who have become (or tried to become) part ofthe culturally Deaf community;

� those whose hearing impairment is fixed and stable, and those for whom it fluctuates oris in periodic decline.

As Corker and others (e.g. Leigh 2009) have demonstrated, then, considerable over-simplification is involved when deafness is treated as the homogeneous opposite of hearing. Thecategories of deaf and hearing are analytically useful constructions, but they may not have muchto do with the real complexity of deaf experience. Deaf people who prefer to use sign languagebut who, by choice or circumstance, function predominantly within the hearing world, ormoderately hearing impaired people who can sign but also function well in hearing contexts, ornon-signing audiologically deaf people who can use hearing aids or CIs to participate fully inphonocentric society – all fall outside a neat framework of ‘deaf vs hearing’ or ‘Deaf vs deaf’.

Technology and D/deaf identity

In addition to the complexities already outlined, D/deaf identities are also evolving in responseto technology (Chorost 2005). New modes of communication such as texting, email, instantmessaging and so on offer alternatives to the phonocentric dominance of communication in thehearing world, as a result shifting the experiences of both deaf and hearing people in theirinteractions with each other. For example, no one using these modes of communication needknow that their interlocutor is deaf unless he or she chooses to say so, and in principle thismakes it easier for deaf and hearing people to interact on a more equal footing.

A rather more contentious example of technology’s effects on deaf identities can be foundin the use of CIs. The culturally Deaf community’s initial response to CIs in the early 1980sand 1990s was dominated by anxiety and sometimes outright hostility, particularly as the CIindustry moved towards favouring implants for very young children (Lane and Bahan 1998;Nunes 2001; Christiansen and Leigh [2002] 2005; Sparrow 2005; Ladd 2007). In retrospect,it is possible to see this hostility as fuelled by the (over)zealous promotion by the CI industryof the implants as total ‘cures’ for deafness (Goggin and Newell 2003). The idea that CIs curedeafness was and is especially appealing to late-deafened adults and to culturally hearingparents who find themselves with a deaf infant; it promises to restore deaf children to theparents’ hearing world. From the point of view of culturally Deaf people, on the other hand,the same promise of cure effectively obliterates the future of the Deaf community. With thepassage of time, however, both deaf and hearing people seem to be moving towards a moremoderate and realistic view as a growing number of Deaf adults take up the technology, andironically as it becomes clearer that CIs, despite the hype, do not eradicate deafness either asan audiological trait or as a culture. Children and adults whose hearing impairment is severeenough to warrant CI implantation do not miraculously become hearing post-implant. Theywill always have a significant audiological difference from the ‘norm’, and their experiencesand therefore their identities and identifications reflect this (see for example Christiansen andLeigh [2002] 2005; Doe 2007).

Hence the debate around CIs today is not just about whether they will cause the extinction ofthe Deaf community. The question has become whether CI users represent a new way of living


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deafness, one that as yet does not fit easily within familiar models of Deaf culture or identity(Most et al. 2007). Drawing on Grosjean (1996), Leigh has discussed the experiences of some CIusers, particularly young people who have grown up with the technology as a routine part oftheir own deaf lives, as illustrating a trend towards ‘biculturalism’ (Holocomb 1997; Most et al.2007; Hintermair 2008; Leigh 2009: 49–53) within D/deaf communities. While recognising thepositive potential of being able to inhabit both Deaf and hearing cultures without being forced tochoose between them, Leigh does not downplay the stresses of moving between cultures, andthe flexibility of identifications and behaviours that this demands, especially when one culture isdisvalued by the other, or when one or both cultures may reject the possibility of a biculturalidentity. These issues have of course been extensively examined in the context of ethnic or racialbiculturalism; at the moment, it is not clear how far those models can be applied to deafness, inpart because deaf biculturalism is a relatively new phenomenon, and also because there is as yetonly a small (although growing) body of empirical evidence about how CI users, of differentages, make use of the technology, and how they negotiate identification within and withoutDeafness (see for example Wheeler et al. 2007).

Deaf and/or disabled?

The Deaf cultural construction of deafness, not as impairment but as membership of aminority linguistic group, is a powerful one for deaf identity. Clearly, it also presents somedifficulties for both the disability movement and disability theory. Part of the incompatibility ofapproach lies in the fact that neither the political disability movement nor disability studies isprimarily concerned with the normative status of the physical or mental variation that ends indisability. For both activism and theory, there is generally less interest in how ‘normal’ a visualor mobility impairment might be than in understanding or eliminating the social and politicaldisadvantage that follows from it. Disability activists and theorists alike have worked to getacross the message that disabled people are ‘just like anyone else’, except for the disadvantagethat follows from their impairment; that disabled people have the same value, civil and politicalrights, and can hold the same positions in society, as their non-disabled peers. Similarly, thosedeaf people whose identity is as people ‘just like anyone else’ but with a hearing impairmentcan join with the disability movement in arguing that removal of social barriers will go a longway towards removing the disablement caused by an audiological impairment.

But the alternative view of deafness as a normal human variation – not a failure of function,but a state of being, supported by a distinct culture that currently is not accommodatedwithin mainstream society – is rather different. Those who hold this view are saying that thekind of barriers they face are simply not analogous to the ones encountered by other disabledpeople (that is, hearing people with other kinds of impairment). The major barrier of lan-guage difference divides them from other disabled people as much as from the non-disabled,hearing majority. As Corker says, while disabled people want to be incorporated into thenon-disabled world, the Deaf culture view implies that Deaf people do not want to be partof the hearing world in the same way but want the right to exist as a minority group. Notsurprisingly, this has caused tensions between a Deaf cultural consciousness and the politicaldisability movement, since ‘for disabled people [it] implies social and, more importantly,political fragmentation, because Deaf people conceptualize oppression and their relationshipto the oppressor differently’ (Corker 1998: 137).

An additional, less obvious, difficulty is that strict adherence to the cultural minority groupmodel also raises difficulties for those Deaf people who wish to disavow an identity as hearingimpaired, but at the same time also want/need access to various accommodations such as sign


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language interpreters or financial support to obtain hearing aids or CIs to bypass theiraudiological deafness in a hearing world. It is problematic to assert that one is not disabledbecause of one’s deafness and yet still claim to need the kind of support that is made availablethrough disability discrimination legislation.

Reproductive technologies and deaf identity

The question of the ontological status of deafness – whether some kind of normative deafidentity is a reality or just special pleading by deaf people trying to raise their self-esteem – isparticularly salient at a time when various techniques of prenatal, preimplantation and evenpreconception diagnosis of heritable deafness are becoming routine (Arnos 2003; Smith et al.2010). As genes associated with genetic forms of deafness are found, genetic testing ofembryos or fetuses for deafness is likely to be offered both to ‘at-risk’ families and potentiallyas part of population-wide screening programmes. In most countries, these highly sophisti-cated (and expensive) reproductive diagnostic technologies are also highly regulated, and as aresult, there is considerable pressure from regulators and health care providers to definewhich conditions may or may not be tested for, and which tests will be reimbursed byinsurers. The diagnostic possibilities coupled with the need for regulation mean that thequestion of ‘defining deafness’ (and other disabilities) is introduced into public and policydiscussions. Crucially, this has meant that confusions and disagreements about the nature ofdeafness and disability are exposed to greater public scrutiny.

A recent example occurred in the United Kingdom during the 2008 revision of theHuman Fertilization and Embryology Act. Revision of the original law was felt to benecessary because of the technical advances that had been made since 1990, including pre-implantation genetic diagnosis (PGD) of various traits. In the event, one of the most disputedchanges was the introduction of a clause prohibiting the clinics that provide PGD or gamete(sperm or egg) donation from using embryos or gametes carrying genes for known seriousgenetic disorders, if there are alternatives that do not carry those genes. So, for example, if adeaf couple is using IVF services because of the woman’s infertility, and wants to use adonated egg, the new law in principle prevents them from selecting an egg donor known tohave genetic deafness if ‘non-deaf’ donor eggs are available. While the draft law itself men-tioned disability only in general terms, in the ensuing debates it became obvious that theclause had been introduced in response to one or two high-profile cases of culturally Deafpeople expressing a preference for having deaf rather than hearing children (Levy 2002;Spriggs 2002; Bauman 2005; Scully 2008). The subsequent parliamentary and media discus-sion (see Emery et al. 2010) also revealed significant misunderstanding and misrepresentationof why (some) Deaf people should want to have, or at least not exclude the possibility ofhaving, a deaf child. It was usually presented as a case of Deaf people wanting ‘to havechildren like themselves’; in other words, allowing their need to identify with their child, ortheir ideological convictions about populating a future Deaf community, to override theirobligation to safeguard the child’s best interests. This misses the point that, if the Deaf cul-tural perspective is that deafness is an identity, not an impairment (Anstey 2002), thenthe question of whether it is ethically permissible to inflict impairment on the child is notsalient – although other ethical queries remain.

Commentators also failed to grasp that for the most part, Deaf people were not arguing forthe right to select for (or to increase the chances of having) a deaf child. Suppose a womanundergoes IVF and PGD to produce six embryos, three of which have a gene associated withheritable deafness, and three of which do not. Opting to transfer the three ‘hearing’ ones


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expresses a preference to have hearing children. Opting for the three ‘deaf’ ones expresses apreference for deaf children (which is what the UK law is designed to prevent). An alter-native possibility, however, is not to have a preference for either, or to want not to expressa preference for either, if you believe there is no difference between deaf and hearing thatwould matter to you or to the child. (This need not entail holding the strong culturallyDeaf position, but could also include the more moderate position that audiological deafnessis an impairment, but not enough of a disadvantage that an alternative must always bepreferred.)

The new clause blocks both the positive choice in favour of a child with genetic hearingimpairment (‘choosing a deaf child’), and the negative choice of not wanting to make anyselection (‘leaving it up to chance’). Although the debate has focused on the rights and wrongsof the positive choice, that is, expressing a preference for a deaf child, the people most likely tobe affected are those who would prefer not to make any selection. Through its regulation ofaccess to reproductive technology, the new Act embeds in law the conviction that deafness(and any of the other serious genetic conditions the law covers) is undesirable enough that analternative embryo or gamete donor must always be preferred. Essentially, this is a rejection ofthe possibility that a Deaf identity can ever be normative. The designers of the law clearly feltthat this conviction was incontestable, although the subsequent public debate meant that it waschallenged by a variety of stakeholders, including some disability groups.

The ethical importance of self-definition

[T]he discourse of culture [is] a process involving a concerted focus on self-definitionrather than being defined by hearing observers as had previously been the case.

(Leigh 2009: 15)

I argue that the crucial fissure between disability and Deaf culture is to do with the contestedmeaning of deafness and whether it should be seen as impairment, or as a neutral but identity-forming characteristic. The lack of unanimity here is important for the reasons outlined above:the difficulty that the Deaf cultural understanding presents for disability studies’ attempts toproduce a coherent theory of disability, and the effect that the exclusion of Deaf people has onthe movement’s political authority. Disability theory needs to address the theoretical tension,because as an academic discipline it is required to analyse and understand the phenomenon ofdisability in all its manifestations and through all its consequences. If the empirical evidence aboutthe lives of deaf and disabled people, and their own statements about identity or belonging, situneasily with the theory, then the theory needs to be modified.

If accounting for a culturally Deaf identity is problematic for disability theory, one approachwould be to accept the difficulties as insurmountable: disability theory just does not give anadequate account of Deaf experience. That still leaves us with the problem of a theory that isunable to account for an awkward observation. Another possibility would be to say that Deafidentity is not, and cannot be, a cultural minority; that the claim is quite simply mistaken. Butfor disability theory to do that would be to take away from Deaf people their authority todefine who they are. The contemporary politics of identity holds that recognition is as muchabout processes of self-definition as it is about creating political entities (Taylor 1994; Honneth1996; Lloyd 2005). If so, then refusing to accept a group’s self-definition is wrong for tworeasons: first, because it compromises the group’s ability to disavow the negative characterisa-tions created by others, and second, and more fundamentally, because it fails to respect theindividuals concerned as autonomous agents. To respect the autonomy of a deaf woman, for


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example, means crediting her with the epistemic and semantic capacity to articulate her self-hood to others in ways that are in keeping with her own experience, rather than the hearingworld’s understanding (or the culturally Deaf world’s), if her experience happens not to fit that.To say that her claim to a Deaf identity is meaningless, or conversely to say that she is not‘authentically’ deaf because she sees her deafness as an impairment and not as a neutral varia-tion, effectively denies her capacity for self-definition. It inflicts moral harm by holding her to areduced mode of being (Taylor 1994: 25).

Concluding comments

D/deaf identities present disability studies with some serious difficulties in terms of the-orising disability, the relationship between disability, impairment and ‘normal’ variation,and in framing the relationship between disability and identity. These difficulties are notjust of interest to disability scholars, as deaf identities are also problematic for the politicaldisability movement, bringing anxieties about fragmentation and weakened political andethical claims. Such anxieties raise broader questions about the nature of collectiveidentity and the politics of recognition that cannot be given detailed examination here(but see Scully 2008; Leigh 2009). What can be said is that in the D/deaf world, ‘relianceon a single and primary unifying identity is giving way to the plurality of identities/self-labels’ (ibid.: 166), and that within both the disability world and the deaf world thereseems now to be greater acceptance that diversity of experience is an empirical realitythat cannot be glossed over for the sake of ideological neatness (Corker 1998; Paddenand Humphries 2005; Fernandes and Myers 2010). Attempting to do so runs the risk notjust of being theoretically untrue but of losing political credibility, as the rhetoric starts todiverge from the realities of deaf people’s lives.

It could be argued that having a deaf identity, in which one is a person disabled by socialor attitudinal barriers, is fully compatible with the theories of disability that see physicalimpairments leading to disablement because of disabling social structures. But because itdoes not refer to impairment at all, a model of Deaf identity based on a culturally Deafview of deafness as normative is hard if not impossible to contain within existing disabilitytheory. For Corker, the main difference is that the disability movement focuses on socialstructures and sees identity emerging from socially structured difference; Deaf people onthe other hand make identity claims based on cultural difference (Corker 2003). For itspart, Deaf studies also has problems accommodating the growing diversity of experiences ofdeafness. As I said earlier, this diversity is likely to increase with the social acceptance andpresence of deaf people in wider society, and as technological aids increase the range ofways in which deaf people can engage with the phonocentric world and perhaps also thefluidity of identities that can be maintained. The difficulty here is to account for the fullrange of experiences and deaf identities they generate, while remaining as theoreticallyconsistent as possible.

I have detailed elsewhere (Scully 2008) why I consider that it may be helpful to shift theexplanatory framework away from the language of either impairment or of a neutralidentity-forming characteristic, and from Corker’s binary of socially versus culturally gen-erated differences, towards the examination of phenotypic variations in context. Deafnessand disability should be understood as instances of embodied human diversity that cannotbe evaluated if displaced from the specific familial, cultural and social context in which theywill be lived. The varied accounts of D/deaf identities indicate that the same phenotypicvariation can have very different meanings to different deaf people. The features that


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determine whether deafness is lived as a damaged or a normative identity are partly intrinsic(type and stability of hearing impairment, age of onset, association with other impairments),but the most decisive factor in the formation of a culturally Deaf identity may well be simplythe degree to which the normality of deafness is endorsed by family and community.

Interestingly, some recent legal discourse on disability gives indications of moving towardsthe idea that (at least some kinds of) disability are the consequence of a general societalintolerance of the possibilities of human diversity. For example, the United Nations Con-vention on the Rights of Persons with Disabilities, which came into force in May 2008,contains a statement of eight General Principles in Article 3 that guided the thinking behindthe Convention and that should guide how it is interpreted in the future. General Principle(d) is given as Respect for difference and acceptance of persons with disabilities as part of human diver-

sity and humanity. Many of the key terms in this principle are open to interpretation, but it ispossible to understand the phrase ‘acceptance of persons with disabilities as part of humandiversity and humanity’ to mean that disability is not necessarily an undesirable anomaly inhuman life, and that at least some forms of disability may be considered as human variationsthat, in the right context, can be trivially or not at all disadvantageous. While this is not theonly possible interpretation of General Principle (d), the move towards a discourse of dis-ability ‘diversity’ rather than ‘impairment’ or ‘anomaly’ is significant, and one that may offer amore fruitful way of including Deaf culture and disability within the same theoretical andpolitical language (Scully 2011).

Ultimately, then, the difficulties faced by both disability and Deaf studies are poten-tially creative, forcing the re-examination of inadequate theory, based sometimes onequally inadequate empirical knowledge. Deaf scholars such as Corker (1998), Leigh(2009) and Scully (2008), and disability scholars such as Watson (2002), Shakespeare(2006) and Thomas (2007), have all drawn attention to the need for models of deafnessand of disability, respectively, to be more faithful to the empirical evidence that experi-ences of both deafness and of disability are highly contextual and result from differentkinds of mismatch between cultural expectations of normality and the realities of a per-son’s embodiment. An empirical approach that focuses on exploring the details of themismatch between embodiment and expectation, rather than on the nature of theimpairment or on the sociopolitical label of D/deaf or disabled, is also more in accordwith contemporary views of identity as dynamic, contextual and intersubjective. In thisway is possible to see the ‘problem’ of D/deaf identity as beginning to open up a theoreticalspace that enriches both Deaf and disability studies.

Notes

1 Throughout this chapter I use the convention by which audiological deafness is indicated with a lowercase dand cultural Deafness with an upper-case D. Where I want to refer generally to both, I use deaf; when Iwant to emphasise that I am referring to both, I use D/deaf.

2 Indeed, it has been suggested that it is not necessary to be audiologically impaired in order to be consideredDeaf by the Deaf world.

3 The significance of the Deaf school to the perpetuation of the community lies behind the resistance ofmany Deaf activists to mainstreaming in education – that is, the policy of prioritising the integration ofchildren with impairments into standard schools. From the Deaf point of view the result is furtherdilution and fragmentation of the sites of Deaf culture.

4 There are clearly problems with referring to ‘the deaf community’ in a discussion that emphasises theplurality of identifications of deaf people. Throughout this chapter I use ‘community’ in a loose sense,to indicate deaf people generally, without making any strong claims to community coherence or uni-formity, and without denying that, in a very real sense, multiple communities of deaf people exist.


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http://www.ncbi.nlm.nih.gov/

12

THEORISING THE POSITION OFPEOPLE WITH LEARNINGDIFFICULTIES WITHINDISABILITY STUDIES

Progress and pitfalls

Kirsten Stalker

Introduction

From the 1960s through to at least the 1990s the dominant theoretical framework within theacademic study of learning difficulties, and within policymaking and service delivery forpeople with learning difficulties, was normalisation: arguably this is still the case (Yates et al.2008; Walmsley 2010). Normalisation has been roundly critiqued by writers within andoutside disability studies, for example, because it fails to explain the oppression of peoplewith learning difficulties or to offer a means of liberation (Oliver 2009). On the other hand,Race et al. (2005) suggest that academic differences between disability studies and normal-isation are ideological rather than substantive, pointing to similarities between their respectiveanalyses of devaluation that would repay closer examination.

Nevertheless, there have been few attempts to theorise the position of people withlearning difficulties in disability studies. Some writers have asserted that disability studies hasignored people with learning difficulties (Chappell 1997; Walmsley 1997, 2010) or that thesocial model of disability fails to address the barriers facing them (Aspis 2000). Others havegone further, arguing that this has resulted in a ‘discursive othering’ (Dowse 2001) or dis-empowerment (Roets et al. 2004) of people with learning difficulties, many of whom donot find the social model accessible (Docherty et al. 2010). Disability studies has also beencharged with failing to take researchers with learning difficulties seriously (Björnsdóttir andSvensdóttir 2008; Aspis 2000).

People with learning difficulties were certainly missing from the definition of disabilitycoined by UPIAS (tellingly, the Union of the Physically Impaired Against Segregation), whichformed the basis of the social model of disability, namely that ‘Disability is the disadvantageor restriction caused by a contemporary social organisation which takes no or little account ofpeople who have physical impairments and thus excludes them from the mainstream of social

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activities’ (1976: 20). Although the word ‘physical’ was later removed, Shakespeare (2006)suggests that a broader definition of impairment might have led to a richer understanding ofdisability.

Most key disability studies texts make little reference to people with learning difficulties.Oliver’s seminal Politics of Disablement (1990), which sets out the main theoretical frameworkfor the social model, makes little mention of people with learning difficulties – an omissionwhich he later defended on the grounds that disabled people should not be divided intoimpairment groups. A notable exception is Another Disability Studies Reader? Including People

with Learning Difficulties (Goodley and van Hove 2005), which specifically aims to develop abetter understanding of people with learning difficulties within disability studies and includesseveral writings by and with people with learning difficulties. Goodley (2004a) also edited aspecial issue of the British Journal of Learning Disabilities along similar lines.

In the United Kingdom, where disability studies has been dominated by the socialmodel of disability, since the 1990s there has been a steady trickle of work about peoplewith learning difficulties by academics, researchers and, increasingly, people with learningdifficulties themselves. Some of this thinking focuses on developing an inclusive socialmodel of disability, some centres on inclusive research and how to do it, and some of itdraws on social constructionism, poststructuralism and/or post-modernism. In the UnitedStates, where for several decades interpretivism and, particularly, social constructionism havebeen key perspectives in understanding the position of people with learning difficulties,inquiries into their social, cultural and political situation are more firmly grounded withindisability studies (Taylor 1996). Goodley (2004a) reports that disability studies in Belgium,France, Scandinavia, Croatia and Australasia closely reflects the agendas of people withlearning difficulties.

This chapter aims to give an overview of how far, in what ways and how effectively learningdifficulties has been theorised within disability studies. It includes an examination of the con-cept of impairment – a highly contested area, but key to different ways of understanding theexperiences of people with learning difficulties. The chapter concludes with some suggestionsfor future directions of travel. I use the term ‘people with learning difficulties’ because that isthe preferred term of the self-advocacy movement.

How far and in what ways does the social model account for theexperiences of people with learning difficulties?

Experiences people with learning difficulties share with other disabled people

Some writers have argued that the social model does have the potential to account for theexperiences of people with learning difficulties but that it has not as yet been fully applied tothem and that further theorisation is needed to include them.

As various disability studies commentators have pointed out, there are a number ofdimensions on which the social model appears to fit very well with the position of peoplewith learning difficulties. First, the model rests on a Marxist analysis of the impact of capit-alism and industrialisation on people with impairments; this applies equally to those withlearning difficulties (Ryan and Thomas 1987). The rise of the long-stay institution, eugenicsand the emergence of professionals further contributed to their oppression (Chappell 1997).Today, new forms of governance associated with increasing globalisation, neoliberalism andthe ‘risk society’ present new challenges at both the personal and political level for peoplewith learning difficulties (Dowse 2009).

Learning difficulties within disability studies

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Second, like other disabled people, those with learning difficulties experience exclusion anddiscrimination in many areas of their lives – for example, in the health service (Disability RightsCommission 2006), education (National Institute of Adult Continuing Education 1998),employment (Berthoud and Blekesaune 2007), housing (Edgar and Muirhead 1997) andtransport (Jolly et al. 2006). There are proportionally higher rates of poverty among disabledpeople, including those with learning difficulties (Emerson et al. 2005), than the non-disabledpopulation. Simpson (1999) argues that people with learning difficulties must demonstratecompetence before being given liberty – the opposite of what applies to other citizens. Oftenthey are not listened to, not respected and subject to other people’s judgements and decisions.

Third, numerous studies have shown that people with learning difficulties face attitudinalbarriers that range from being patronised or pitied to harassment and hate crime. As childrenand adults they may be subject to high levels of abuse and neglect. These experiences are notso well addressed in the so-called strong social model but are addressed in Thomas’s (1999,2007) concept of ‘psycho-emotional disablism’, meaning that ‘The intended or ‘unintended’‘hurtful’ words and social actions of non-disabled people (parents, professionals, completestrangers, others) in interpersonal engagement with people with impairments … The effectsof psycho-emotional disablism can be profound’ (ibid. 2007: 72).

The cumulative impact of psycho-emotional disablism can lead to ‘barriers to being’,meaning restrictions on who an individual feels they can be or become, their inner world,sense of self and social behaviours being negatively shaped by these experiences. Thomasfurther argues that psycho-emotional disablism interacts with restrictions imposed on disabledpeople in various areas of their lives including employment and education. Given thatpsycho-emotional disablism is a common occurrence for people with learning difficulties, it issurprising that this concept has been little explored in relation to this group.

Finally, while people with learning difficulties may be less likely to face the material bar-riers experienced by those with physical or sensory impairments (although some people withlearning difficulties have other impairments as well), they often face barriers in terms ofinformation provision, including inaccessible formats, use of jargon and complex language(Stalker and Lerpiniere 2008). Current developments in communication such as texting, theinternet and emails create additional barriers for some (Docherty et al. 2010).

In short, people with learning difficulties have similar experiences to other disabled peopleon several dimensions that are addressed by the social model of disability. The concept ofpsycho-emotional disablism is also relevant. However, there are other ways in which theposition of people with learning difficulties may be seen as distinctive.

Experiences which may be distinctive to people with learning difficulties

First, a potential difficulty for the inclusion of people with learning difficulties in the socialmodel has been the latter’s focus on the body as ‘the site of impairment’ (Chappell 1997).Boxall (2002) suggests that the experiences of people with learning difficulties may havemore in common with other minorities’ experiences of marginalisation than with other dis-abled people’s experiences of impairment (pain, fatigue and so on). On the other hand,Shakespeare (2006) argues that disablism differs from sexism or racism in that there is nothingintrinsically disadvantageous in having black skin or being female, whereas there are realdrawbacks to having an impairment. I will return to the question of embodiment towards theend of the chapter.

Second, an important feature of disability studies is its stance on disability as part of apositive collective identity, reflected in the concept of ‘disability pride’ within the disabled


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people’s movement. In contrast, people with learning difficulties – as represented in the self-advocacy movement – generally reject being labelled as disabled, preferring to focus on theirshared humanity with fellow citizens (Taylor 1996). The slogan of the international PeopleFirst movement, as many writers point out, is ‘label jars, not people’. There are isolatedexamples of individuals with learning difficulties celebrating their impairment (e.g. de Souza’spositive statement, quoted in Goodley (2001: 217), about having 47 rather than 46 ‘cells’: herfather called this ‘Up Syndrome’ rather than Down’s syndrome). However, it is morecommon for people to distance themselves from the traits and stigma typically associated withlearning difficulties and sometimes for relatively ‘able’ individuals to differentiate themselvesfrom those with more severe impairments (McVittie et al. 2008).

Third, although this is a contested area, the ‘strong’ social model downplays the role ofpersonal experience in understanding disability and oppression. Personal experience is veryimportant to many individuals with learning difficulties who tend to focus on their own stor-ies – concrete examples drawn from day to day life – in discussion (Walmsley 1997). Partly forthis reason, many studies with people with learning difficulties have used life history methods.On the other hand, there have been many calls for the social model to recognise the sig-nificance of personal experience (e.g. Morris 1991; Crow 1996; Shakespeare and Watson2002). The issue therefore may be how to support people to move from anecdotal accounts tomore generalised analysis of shared experiences, as discussed below.

Finally, there is an argument that the widespread prejudice and discrimination faced bypeople with learning difficulties also obtain within disability studies Aspis (quoted in Camp-bell and Oliver 1996) suggests that other disabled people are frightened of being labelled‘stupid’ if they associate with people with learning difficulties or include them in disabilitystudies Docherty et al. perceive a hierarchy of impairments within the disabled people’smovement, in which people with learning difficulties and those with mental distress are atthe bottom, ‘like the doormat of disability’ (2010: 438).

These problems indicate a need for more theorisation. However, more attention has beenpaid to who is, or should be, developing theory rather than to actually doing it. The nextsection reviews these arguments because they have implications for theory development.

Who should theorise about ‘learning disability’ – and how?

There has been increasing criticism of writing and research about people with learning diffi-culties that does not involve them in the process,1 mirroring earlier calls for the withdrawal ofnon-disabled people from disability studies. Townson et al. (2004) describe any research thatdoes not actively include people with learning difficulties in planning/executing it as‘rejecting research’: this includes work that involves people with learning difficulties in somebut not all aspects of a study. Aspis (2000) believes that people without learning difficultiesdeliberately exclude those with learning difficulties from research, for example by choosingnot to fund proposals written by the latter or engage them in analysis, because to do sowould diminish non-disabled researchers’ power.

Disability studies promotes emancipatory research in which disabled people are in control.A number of researchers have noted that most people with learning difficulties need supportto conduct research and develop ideas. On the basis of many years’ experience of conductinginclusive research, Walmsley (2010) suggests that emancipatory research is ‘more difficult’ formost people with learning difficulties to achieve. Increasingly, there are published accounts ofwork undertaken by researchers with learning difficulties and their non-disabled supporters.Walmsley has critiqued this literature in terms of the power relations involved and how


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transparently – or not – these are represented. Most of this work is either very appliedresearch – evaluations of services, investigations of how support could be improved – or lifestories. Docherty et al. (2006), for example, describe how they have become increasinglyassertive in standing up for their rights and discuss the improvements they would like to see inlifelong learning and transport provision. Spedding et al. (2002) recount parts of their life storiesand reflect on what they have learnt while, in the same text, Chapman, a non-disabledvolunteer with this group, argues that supporters have a role in facilitating a shift in perspectivefrom the personal to the political aspects of self-advocacy, which ‘links directly into the socialmodel of disability’ (ibid.). They can assist self-advocates to understand that their individualexperiences of oppression have common threads that relate to wider attitudes, structures andhistory. Boxall (2002) notes that some theorising about people with learning difficulties withindisability studies is ‘complex’ but adds that with support some individuals can gain an under-standing of the basic principles of the social model. They may conceptualise their oppression asunfair treatment. Boxall et al. (2004) later give an account of a learning disability studies courseat Manchester University which aims to contribute to the development of the social model bysupporting people with learning difficulties to articulate their ideas.

One consequence, or perhaps symptom, of the tension between research conducted byacademics alone and that carried out by self-advocates is a strain of what could be seen asanti- intellectualism or ‘anti-theory’ evident in some writings. Björnsdóttir and Svensdóttir(2008), a PhD student and her co-researcher with learning difficulties, reject the notions of‘academic authority’ and ‘complex theory’, stating that the latter is equally impenetrable tothem both. Chapman and McNulty (2004) condemn the use of ‘complicated methods’ andacademic concepts which ‘reject people from so much they could be part of’. Boxall et al.refer to non-disabled researchers’ ‘vicarious interpretations’ of the experiences of people withlearning difficulties and criticise ‘negative and disabling objective knowledge about peoplewith learning difficulties produced by dominant group researchers’ (2004: 108).

Walmsley (2001) agrees that researchers should develop accessible ways to engage peoplewith learning difficulties in theorising but notes that the ‘often complex, nuanced and difficult’nature of theory is not debated within disability studies. She admits she has been challenged bythe ethical dilemma of how to support without ‘taking over’ and for this reason has on severaloccasions ‘held back’ from developing the theoretical implications of a study because to do sowould have excluded her colleagues with learning difficulties. This leads her to pose somedifficult questions regarding theoretical development, such as should we avoid theorising ifpeople with learning difficulties are not or cannot be included? If so, ‘There is a risk thatlearning disability studies may remain the untheorised experience-based poor relation of itsintellectually wealthier cousins in disability studies, feminism and black studies (Walmsley andJohnson 2003: 186).

‘Doing the social model’

A different view is that, while most people with learning difficulties may not be theorising inthe conventional sense or using academic methods to do so, some self-advocates are engagingwith ideas inherent in the social model through everyday acts of resistance and resilience.However, the political nature of their actions often goes unrecognised and thereforeuntheorised (Chappell et al. 2001; Chapman and McNulty 2004).

Goodley (2001) gives some examples of people with learning difficulties ‘doing’ the socialmodel in this way. One concerns Elaine, a self-advocate who is driven to self-advocacymeetings by taxi because she has been assessed as unable to travel independently, including


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crossing roads, and as never able to learn. Once the taxi has dropped her off and is out ofsight, Elaine looks right and left then walks across the road to buy milk and biscuits for themeeting. The clinical psychologist’s assessment of Elaine as incompetent is contrasted withthe responsibility invested in her by the self-advocacy group for whom she is ‘shoppingmanager’. Goodley concludes that ‘She demands that we start asking how we see peoplewith the label of learning difficulties, while alerting us to the contexts (real or imagined) inwhich we do the seeing’ (ibid.: 221).

Arguably, however, this incident is open to different interpretations and Goodley does notreport having discussed his interpretation of Elaine’s behaviour with her.

Those individuals with learning difficulties who have become successful researchers andcommentators are sometimes described as atypical and unrepresentative of the wider populationof people with learning difficulties. The implication is that their work is in some way invalid andthat the majority of people with learning difficulties could not be expected to produce work at asimilar level. Bogdan and Taylor (1982) anticipated a similar response to the life stories of EdMurphy and Pattie Burt, who were labelled as ‘mentally retarded’ and spent many years ininstitutions yet relate their histories with great insight and articulacy. Certainly, it is unfair toapply tests of representativeness to people with learning difficulties that are not generally appliedto other groups. On the other hand, ‘learning difficulties’ is a blanket term applied to people witha very wide range of abilities, which brings us to the thorny issue of impairment.

Impairment: the contested issue

Although the original UPIAS (1976: 20) definition described impairment as ‘lacking all or partof a limb, or having a defective limb, organism or mechanism of the body’, the early socialmodel did not on the whole discuss impairment. Abberley (1987) was unusual in proposingthat a theory of disability as oppression must recognise the social origins of impairment,although he is sometimes cited as arguing for the social construction of disability which is anover-simplification of his position. For instance, he gave the example of phenylketournia as a‘real’ impairment leading to learning disability which can now be seen as ‘socially determined’since diagnostic tests can detect and resolve the condition. However, the focus in the socialmodel, at least in its early days, was very much on the socially constructed nature of disability,with impairment and its implications receiving little attention. The emphasis was on disabledpeople’s shared experiences of oppression: considering impairment was tantamount to a returnto the individual or medical model. Over the years, however, it has become a contested issue.Some disability studies theorists see impairment as socially constructed, while others wouldargue that it has a material or organic basis.

Impairment as a social construction

The social construction of learning difficulties has been traced across centuries. Historically,people with learning difficulties have been ascribed many different identities – often opposing,contradictory identities, not of their making or choosing. They have been portrayed as asexualand as sexually promiscuous; as dangerous/innocent; in league with the Devil/a gift from theangels and so on (Ryan and Thomas 1987; Simpson 1999; McClimens and Richardson 2010).In these examples, impairment itself may not be questioned; the focus is on its perceivedmeaning and significance.

In a study of eight Bengali mothers whose children had ‘limited speech, challengingbehaviour and severe impairments’, Rao (2006) records how the women perceived their sons


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and daughters as competent, able, ‘normal’ (a word the mothers used) and intelligent, despiteacknowledging their weak academic abilities. In this community, the most important skillsfor children to master were, first, understanding and fulfilling appropriate social roles andrelationships within the family and, second, abiding by the tenets of ‘good conduct’. Thesechildren were able to do both to their mothers’ satisfaction. Their differences were seen as‘part of the normal range of human diversity’ illustrating that, in Rao’s words, ‘whileimpairment is a human constant, how it is perceived depends on the social and culturalmilieu of which it is part’ (ibid.: 160).

Other theorists argue that ‘impairment’ is a socially constructed category with little usefulmeaning but acknowledge that difference, including varying forms and levels of intelligence,exists. In their seminal life history work with Ed and Pattie, two former residents of long-stayinstitutions in the United States, Bogdan and Taylor assert that:

The phrase ‘mental retardation’ does point to a state of mind – not the state of mindof the people who are alleged to have it, but the state of mind of those who use theconcept in thinking about others. Mental retardation is a misnomer, a myth.

(1982: 7)

Bogdan and Taylor highlight the flawed nature of IQ testing, which remains a key deter-minant of a ‘diagnosis’ of learning difficulty today. They suggest that the existence ofpeople with lower levels of intellectual ability does not prove the existence of ‘mentalretardation’ any more than, in the Middle Ages, the existence of people who disturbed orupset their neighbours proved the existence of witchcraft. In a later paper, Taylor (1996)argues that ‘learning difficulty’ is a social phenomenon resulting from educational systems thatassess, test and classify children (see also Dowse 2001 and Aspis 1999). A similar argumentcan be made in relation to welfare benefits systems. Individuals’ disability status can changeovernight when new definitions of disability or new eligibility criteria for benefits areintroduced.

Goodley and colleagues in a series of texts (Goodley 2001, 2004b; Goodley and Rapley2002; Goodley and van Hove 2005) go further, apparently arguing that impairment, or atleast learning difficulties, is totally socially, linguistically and discursively constructed and thatno real differences exist between those labelled with learning difficulties and the rest of thepopulation. Goodley (2001: 217) refers to the ‘absurdity of genetically oriented notions ofpersonhood and the associated assumptions of inability’. He argues that ‘social structures,practices and relationships naturalise the subjectivities of people with “learning difficulties”,conceptualising them in terms of some a priori notion of ‘mentally impaired’ (ibid.: 211).

At times using a postmodernist analysis, these writers reject the dualisms of impairment/disability, mild/severe learning difficulty and the individual/society. Goodley (2001) proposesthat a theory of disability which should include and explain the experiences of people withlearning difficulties, by recognising what he calls the social origins of impairment, would havefour elements. The first involves a ‘deconstruction of impairment’, analysing relevant litera-ture to show the social basis of diagnostic criteria. The second is ‘impairment as storied’: thiswould draw upon the life histories of people with learning difficulties to highlight their owndefinitions and accounts of themselves, thus challenging those ascribed by traditional labellingand diagnostic categories. The third element, ‘reculturizing impairment’, focuses on people’sresistance to imposed definitions and restrictions, citing individual examples. The fourth,‘epistemological impacts’, involves an examination of the ways that understandings of‘learning difficulties’ affect those who are given the label. For example, people who make


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assumptions about the low competence of others will interpret the latter’s actions in that lightand miss other explanations which contradict their belief.

While each element promises interesting material and has validity (e.g. other research hasshown the sociocultural determinants of certain medical diagnoses), the proposed theorywould not tell the ‘whole story’ of learning difficulties, ‘disprove’ the existence of an organicbasis in some cases, nor explain variations in people’s intellectual abilities. Nonetheless,Goodley concludes that ‘It is no good theorising impairment in relation to learning difficul-ties if biological assumptions direct (aspects of) analysis. The only theory left would be oneshot through with the ideology of individualism and pathology’ (2001: 225). I will return tothis particular dualism later.

Drawing on interpretivist conceptualisations, Goodley argues that people with ‘learning dif-ficulties’ are ‘voluntaristic individuals engaged in constructing identities and negotiating roles’.In a later paper, Goodley and Rapley (2002) argue that the ‘phenomenon known as learningdifficulties’ would be better understood as aspects of social interaction. They suggest thatacquiescence bias, sometimes attributed to people with learning difficulties as ‘evidence’ of theunreliability of their spoken accounts, is brought about through ‘psy-complex practices’ andthat closer examination, for example of interview data, shows an interactional resilience thatoften goes unrecognised.

Yates et al. (2008) takes up Goodley’s call to challenge accepted epistemologies by drawingon Foucault and discourse analysis. They highlight what they see as a conceptual problem inthe notion of a pre-social being designated as having learning difficulties who does notrespond actively to negative socialisation. From this perspective, essential attributes of thehuman subject cannot be separated from the social domain, the very notion of learningdifficulties arising only within certain systems of knowledge:

A subject is both constituted as an object of thought within systems of knowledge(power) and at the same time actively engaged in their own projects of selfhood andstruggling with the ways their subjectivities are constituted and power takes hold ofthem.

(Ibid.: 256)

Similarly, Roets et al. (2008) draw on postmodernist feminist thought to argue that learningdifficulties have been naturalised as impairment through the mechanisms of truth, power andknowledge. They question ‘essentialist rhetoric’ – the idea that reality exists independently ofcultural and historical circumstances – which they argue constructs categories and subjectpositions which become accepted as pre-given, universal and immutable. However, theydo not explain why some individuals – and not others – come to be labelled with learningdifficulties. This complex theoretical paper is co-authored by two people with learningdifficulties. It is not clear what the various authors’ respective contributions were.

Impairment as a reality

Other disability studies theorists take a different view of the nature of impairment. Variouscommentators (Morris 1991; Crow 1996; Shakespeare and Watson 2002) have called fordisability studies to pay greater attention to impairment and its implications. Thomas’s(1999, 2007) concept of ‘impairment effects’ refers to restrictions of activity imposed onpeople as a direct consequence of having an impairment (e.g. a dyscalculiac person struggleswith mathematical concepts and may have difficulty with financial accounting) as opposed


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to restrictions imposed on people with impairments as a result of other people’s disablingactions. In Thomas’s (2007) view, it is ‘nonsensical’ to suggest that learning difficulties areentirely socially constructed, while Vehmas and Mäkelä (2009) opine that some postmodernistthinking in this area is ‘peculiar, confusing and even unhelpful’. Baron et al. (1998), Riddell etal. (2001), Walmsley and Johnson (2003) and Shakespeare (2006) all express similar reservations.Oliver (2009) – although sometimes charged with neglecting the implications of impairment –nevertheless declared that having one was a necessary condition of being a disabled person.Abberley (1987), while arguing for a recognition of the social origins of impairment, alsodescribed himself as having a ‘very obvious collection of impairments’ as a result of polio: inother words, not all impairments are exclusively social all of the time. Marks (1999) warnsagainst denying the real problems faced by an individual with organic brain damage, reasoningthat it is important to acknowledge and respect difference rather than seek to erase it. A prac-tical consequence of the latter may be that people will not receive the support to which theyare entitled, thus resulting in further exclusion.2

Boxall et al. (2004) argue that if people with learning difficulties are to benefit from thesocial model, then there is a need to focus on their similarities to other disabled people ratherthan their differences. They further state their ‘commitment’ not to attribute any problems ordifficulties people experience to individual deficit but rather to external barriers. This suggestsa selective approach to considering evidence and implies that if all material and social barrierswere removed, people with learning difficulties would face no limitations – a position thatWalmsley and Johnson (2003) and Shakespeare (2006) consider untenable. Perhaps thechallenge this poses to the wider social model is one reason why few disability scholars haveexplored the issue in depth.

Race et al. (2005) suggest that viewing impairment as ‘perceived’ or ‘accredited’ obviatesthe need to consider the truth or legitimacy of the impairment. This is not dissimilar toGoodley and Rapley’s (2002) argument that impairment is linguistically constructed andcould not even be discussed if language did not exist. However, in an analysis of the ontol-ogy of impairment and disability, Vehmas and Mäkelä (2009) reject the notion that impair-ments are simply matters of representation and discourse which can be done away withthrough a process of de- and reconstruction. These authors distinguish between ‘brute facts’and ‘institutional facts’, the latter resting on language and representation, the former on ‘brutephysics and biology’ (ibid.: 45). They suggest that disability studies is dominated by socialconstructionism because of its political usefulness but propose that an ontology whichrecognises the material origins of impairment, as well as the relational nature of disability,may prove more powerful in eradicating both organic and social causes of individual andcollective distress. Similarly, Bhaskar and Danermark, arguing for the use of critical realism indisability studies, comment:

To weak constructionism, which involves the idea that there is a necessarily interpretedelement in the construction of any theoretical understanding and any social object, acritical realist has no objection. However, if this is taken to imply that the phenomenoninvestigated is just a theoretical interpretation or cognitive construction, or that a socialphenomenon such as some specific form of disability exists only as an idea or belief, thenit is clearly false.

(2006: 283–284)

Several writers – including some who see learning difficulties as at least partly socially con-structed – acknowledge that people with severe or profound impairments will always need


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some level of support (e.g. Simpson 1999; Richardson 2000). Klotz, writing about people withsevere and profound learning difficulties, asserts that ‘intellectual disability’ is ‘an ontologicalreality which makes a real difference to one’s experience of being in the world’ (2004: 98). Sheis critical of sociocultural approaches, including the work of Bogdan and Taylor, which ‘ignorethe implications of difference as both productive of the sociocultural world and the product ofit’ (ibid.). Indeed, there are some genetic conditions that involve both physiological and cog-nitive features, such as Down’s syndrome, Prader Willi syndrome or Rett syndrome, where it ishard to see how difference can be viewed as totally socially constructed.

Summary and conclusions

This chapter has examined how far and in what ways the position of people with learningdifficulties has been theorised in disability studies. It is difficult to avoid concluding that, inthe UK, theorising has been limited, in some respects flawed, and is in danger of reachingan impasse. Several factors are involved. First, the social model, particularly in its earlyyears, neglected people with learning difficulties. A number of reasons can be identified forthis, including the dominance of normalisation and the social model’s emphasis on the body asthe locus of impairment. While the social model may account for some of the experiences ofpeople with learning difficulties, such as unjust treatment and communication barriers, otheraspects fit less well or not at all. The implications for disability studies can be seen in differentways. It could become more inclusive, for example, by taking greater cognisance of personalexperience while supporting individuals with learning difficulties to make links between theirown lives and collective oppression, structural and historical factors. Alternatively, the positionof people with learning difficulties could be seen as highlighting the inadequacies of the socialmodel more widely. For example, if all physical and social barriers were taken away, wouldpeople with impairments still be at a disadvantage compared to those without?

More attention has been paid to people with learning difficulties within British disabilitystudies during the past 10–15 years. Nevertheless, a second factor undermining theoreticaldevelopment is that this has involved a relatively small group of people taking very differentapproaches. There has been little cumulative work with one team building on the work ofanother. Furthermore, some (including those who have pioneered inclusive research) have attimes avoided theoretical work because of perceived barriers in involving people withlearning difficulties. Others, including some who discount impairment, have producedcomplex texts likely to be inaccessible to most people with learning difficulties.

Third, ownership of learning difficulties research and, to a lesser extent, of theorising, hasbecome a contested area. Much effort has gone into this contesting and less into advancingtheory. There has been increasing research activity by people with learning difficulties, which isgreatly to be welcomed. They have a unique perspective and valuable insights, as many studieshave shown. However, work undertaken by/with people with learning difficulties generallytakes the form of applied research or life histories rather than theory. It has been claimed thatself-advocates are ‘doing’ the social model in their everyday lives, especially through acts ofresistance and resilience. It is not always clear, however, if this interpretation has been raisedwith or claimed by the individuals concerned nor how far it helps advance theoretical devel-opment. Walmsley and Johnson (2003) argue that participatory rather than emancipatoryresearch is more achievable for people with learning difficulties. These authors helpfully set outoptions for creative partnerships between researchers and people with learning difficulties.

Fourth, disability studies has been experienced as excluding and inaccessible by some in thelearning disability field, but ‘counter calls’ for a blanket rejection of theoretical work, or of


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research which does not involve people with learning difficulties fully in the process, mayrestrict future development. This stance is somewhat disingenuous when coming from aca-demics themselves. A more reflexive approach might recognise the academy’s power touniversalise ideas and values but, following Bourdieu (1990), be active in challenging which

values and ideas are universalised and how.

Future directions of travel

At a conceptual level, it seems perverse for those who reject dualisms to then set up a binaryopposition between a wholly social constructionist viewpoint on the one hand and ‘an ideol-ogy shot through with individualism and pathology’ (Goodley 2001: 205) on the other. Suchpolarisation gives no space for a more nuanced position capable of capturing the considerablediversity, complexity, contingency and relationalism which, I would argue, characterise theposition of people with learning difficulties.

To do this, disability studies could turn to critical realism, which offers the possibility ofexplaining a phenomenon in terms of ‘a multiplicity of mechanisms, potentially of radically dif-ferent kinds … corresponding to different levels or aspects of reality’ (Bhaskar and Danermark2006; see also Shakespeare 2006 and Watson 2012). From this perspective, neither nature nornon-human reality is socially constructed, but what we know about them is. Bhaskar andDanermark argue that each of the meta-theories informing disability studies=, which they char-acterise as naive realism/empiricism, social constructionism, neo-Kantianism and hermeneutics,has valuable insights to offer but that none alone sufficiently explains disability. Critical realism ispresented as ‘doubly inclusive’ because it embraces all causally relevant levels of reality – helpingus to understand material relations with nature, social interactions between agents, social struc-tures and the stratification of agents’ ‘embodied personalities’ (2006: 289) – while at the sametime accommodating the insights of the meta-theoretical positions mentioned above.

If disability studies adopted critical realism as a ‘grand theory’, then Thomas’s proposed‘sociology of impairment’ (1999, 2007) offers a complementary mid-range or substantivetheory. Her concept of ‘impairment effects’, referred to earlier, recognises the implications ofspecific impairments on people’s day to day lives. However, this is an interaction, not a one-way process, since ‘impairments and impairment effects are thoroughly enmeshed with thesocial conditions that bring them into being and give them meaning’ (2007: 151). Thomasargues that an impairment and its effects are both contingent on social context, and thatimpairment is influenced by social features and circumstances. Thus, neither an impairment norits effects can be seen as purely biological; rather, they are ‘complex bio-social phenomena’.This is reminiscent of Marks (1999), who emphasised the importance of biological, emotional,relational and unconscious levels of analysis in relation to theorising learning difficulties, arguingthat bodily, emotional and social differences are mutually constitutive.

In addition, I have suggested that the concept of psycho-emotional disablism appears to speakto the experiences of people with learning difficulties although it has been little explored inrelation to them. Importantly, Thomas’s model allows the impact of specific impairments to beacknowledged without detracting from the central role and significance of disablism.

This perspective has the potential to fit with themes reviewed earlier in this chapter,including the social and cultural meaning of impairment, the impact of economic, adminis-trative, health and welfare systems, the availability of support, the practical implications ofspecific impairments, the genetic or organic basis of some conditions – and how variousaspects of these different dimensions may interact. It may offer a fruitful way forward forfuture work in this field.


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Notes

1 Some readers will be critical of my decision not to invite a person with learning difficulties to co-authorthis chapter.

2 This is particularly concerning at a time of savage financial cuts in public services; for example, promotingthe idea that people with learning difficulties can take on a wide range of paid work may result in theirdisability benefits being removed. Similarly, the personalisation agenda, which has been so liberating forpeople with physical or sensory impairments, could carry significant risk for those with learning disabilities iftheir particular vulnerability is not addressed (author’s personal communication with Walmsley in 2011,).

Acknowledgements

Thanks to Jan Walmsley for her helpful comments on this chapter.

References

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13

LONG-TERM DISABLINGCONDITIONS ANDDISABILITY THEORY

Sasha Scambler

Introduction

Long-term conditions affect multiple areas of day to day life. The UK Department of Health(2012) defines them as conditions which last over a year, for which there is currently no cure,but for which medical care can be used to control symptoms. As such they can includeanything from cancer to arthritis, multiple sclerosis, Parkinson’s disease or Batten disease.There are a huge range of conditions or diseases that fall under the umbrella of long-termdisabling conditions and vary according to diagnosis, trajectory and prognosis as well as thenumber and general profile of people living with the condition. This said, commonalitiesinclude the requirement to live with the condition on an ongoing basis, the effect on dailylife, the impact of the associated disability/disabilities associated with the condition and thelack of a ‘cure’.

Long-term disabling conditions are the most common cause of disability in the devel-oped world and the most common disability in the UK is arthritis. To put this in context,in 2015 the World Health Organization estimated that 38 million people die each yearfrom non-communicable diseases, and this includes people of all ages from all parts of theworld. In spite of this, disabilities which occur as a result of long-term conditions are oftenrelegated to the sidelines in mainstream disability studies texts. A token chapter on chronicillness can be found in the main textbooks but there is a lack of depth of discussion,research and theorising that surrounds other forms of disability. If we want to explore theexperiences of people living with long-term disabling conditions and the implications ofthese conditions on multiple areas of daily life we need to move into medical sociologywhere there is a long tradition of research in the sociology of chronic illness. This offersinsight into experiences of people living with a range of disabling conditions on a dailybasis and includes explorations of coping strategies, stigma, narrative disruption/reconstruction,economic impact and illness/disease narratives but rarely focuses in on the wider issues ofpolitical oppression and discrimination faced by these groups.

In this chapter, I am going to make the case that more attention should be paid to long-term disabling conditions within disability studies. The case could be made simply on theprevalence of people living with these conditions, but I will also argue that an understanding

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of the nature of disabilities that emerge from the study of these types of conditions offersboth consideration of a different ‘type‘ of disability and a fresh insight into ongoing debateswithin disability studies. We start then with a selective outline or summary of key workwithin the sociology of long-term conditions before seeking to locate this work within adisability studies perspective. The second part of the chapter then takes two case studies ofempirical work to illustrate the value of research in this area in addressing existing challengesand creating new ones. The first case study explores the emergence of ‘empowerment’ as aconcept within health care policy and practice and the impact of this on people living withdiabetes, positing this as a medicalisation of the oppression approach. In the second case studythe debate about the presence and relative importance of impairment, biology and the bodyis revisited with the aid of work on Batten disease, a long-term, life-limiting conditionresulting in multiple disabilities. We finish with some thoughts about possible future directionsfor disability studies and how and why long-term disabling conditions should be an integral partof this future.

The sociology of long-term disabling conditions (chronic illness)

There is little disagreement about the definition of chronic illness, but a variety of approachesto the sociological study of chronic illness have developed, focusing specifically, in laterdecades, on the day to day experiences of living with a condition of this type. The sociologyof chronic illness emerged in the 1950s when the American sociologist Talcott Parsons(1951) first focused sociological attention on health and illness. There is insufficient spacehere for a comprehensive review of the vast theoretical and empirical literature that hasdeveloped in this area over the past six decades but a selective overview of key approachesand themes is enough to demonstrate the relevance and importance of the inclusion of thosewith long-term limiting conditions in wider disability studies debates. Five broad theoreticalapproaches to sociological study in this area can be identified along with six key themes ofdaily life. The theoretical approaches are:

� functionalist;� interactionist;� conflict;� interpretative;� social constuctionist.

The functionalist approach

The sociology of chronic illness developed through the realisation that the bio-medicalmodel of health does not adequately account for the significant effect that chronic illness hason the lives of the sufferers and their families. Parsons (1951) looked at health and illness andthe maintenance of social roles, suggesting that health is the norm and that a person who isunwell is, therefore, deemed deviant. People who are unable to work owing to illness needlegitimisation for their inability to perform their ‘normal’ social roles and so take on a ‘sickrole’ for a temporary period until they are able to revert to their usual roles. Parsons sees the‘sick role’ as a form of ‘sanctioned deviance’. Medical power provides legitimation for thetemporary withdrawal from mainstream society. Parson’s work has been widely criticised asfailing to take into account people with long-term or chronic conditions who remain in the‘sick role’ for extended periods of time, if not permanently, and for whom the ‘sick role’

Long-term disabling conditions

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becomes their normal state (Kassebaum and Bauman 1965). Meanwhile, Friedson (1970)challenges the idea that the ‘sick role’ is accepted by society. He suggests that the level ofacceptance depends on whether the illness is seen as serious, whether the individual is seen asresponsible for causing the illness and whether the illness is accepted as a legitimate one.Gordon (1966) posited the idea of an ‘impaired role’ that is permanent and extremely diffi-cult to move out of, and forces people into an identity as a ‘second-class citizen’ (Sieglar andOsmond 1974). This view can be seen to be perpetuated through the focus on adaptationand normalisation and the biomedical approach to the treatment of impairment and chronicillness (Barnes et al. 1999). Barnes et al. suggest further that people with chronic illnesses are‘treated more as objects than as active participants in the treatment process’ (ibid.: 42).

The interactionist approach

The idea of illness as deviance was developed by sociologists working from a symbolicinteractionist perspective who devised the labelling theory looking at the processes throughwhich a person is labelled as ill and deviant and the impact of this label. Goffman (1968)studied the categorisation of people as ‘normal’ or ‘abnormal’ in society through interaction.The negative image that ‘abnormal’ groups carry is contagious and is transferable to familyand friends who are said to acquire ‘courtesy stigma’ (ibid.: 44). In addition, management ofthe condition depends on the visibility of the symptoms. People with conditions which arevisible and immediately apparent on interaction are ‘discredited’ and focus on managing thetension of the reactions of ‘normals’, while people with conditions which are not imme-diately apparent (such as controlled epilepsy) focus on managing information and disclosureor non-disclosure of the diagnosis. Goffman suggests, further, that the stigmatised person isthen forced into a role as an ‘abnormal’ person and all other aspects of their life have to fallwithin this role. While the ways in which stigma as a concept has been challenged, thereexists a considerable body of work that highlights the stigma experienced by people livingwith a range of long-term conditions, such as Koku’s 2010 study that examines the stigmaexperienced by African immigrants living with HIV/AIDS in the United States and theeffect that this has on access to services and care.

The use of stigma roles can be seen as a way of maintaining control of people who do notfit neatly into norms of broader society. It is expected that the stigmatised people shouldmake a concerted effort to ‘fit’ back into society in their new roles and if they are seen toadjust well they are then acknowledged. ‘This means that the “good adjustment” of thehandicapped is actually a quality granted to them by others. Then people say about themthings like, “he’s very brave”, or “she’s always so cheerful”’ (Radley 1994: 154). Theinevitability of a stigmatised role has been challenged, however. ‘For critics, Goffman’saccount is obsessed with the defensive, anxiety-ridden and largely doomed manoeuvrings ofstigmatised individuals, and of their acceptance of the negative label’ (Barnes et al. 1999: 47).

A number of studies looking at the effects of stigma on people with learning disabilitiesalso found that the negative images were actively discarded (Bogdan and Taylor 1989; Boothand Booth 1994). Goffman’s focus on negative stigmatisation was challenged yet furtherthrough research on epilepsy (Scambler and Hopkins 1986; Scambler 1989) which found thatactual occurrences of negative stigmatisation – ‘enacted’ stigma – were relatively rare, andthat the fear of ‘enacted’ stigma – ‘felt’ stigma – was significantly more common.

More recent work focuses on the power relations at play within stigmatising relationshipsand on what Scambler (2018) refers to as the ‘weaponising of stigma’. This widens the debateto incorporate structural or institutional forms of discrimination. Building on the work of


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Link and Phelan (2001), Jacquet (2015) sets out seven criteria that need to be met in orderfor successful stigmatisation to occur. These include the need for the audience to be con-cerned about the supposed transgression; the ability to identify the undesirable behaviour; thelack of formal punishment; the susceptibility of the transgressor to being shamed; and thedirecting of shame to the most effective areas. Scambler suggests further that this strategy isused as a political act to control the population, and particularly targets vulnerable groups.This can be seen in the recent United Nations Committee on the Rights of Disabled Personsreport (2016) that found, among other things, that disabled people were regularly portrayedin a negative light as dependent on or making a living from being on benefits, committingfraud as benefit claimants, being lazy or placing a burden on taxpayers. This deliberateshaming of a vulnerable group was used as a political strategy to make welfare, health andsocial care cuts seem a reasonable response to the deviance of those ‘playing’ the system(Scambler and Scambler 2019).

The conflict approach

Conflict theorists focus on power relations between the medical profession and the laypopulation. Waitzkin (1989) suggests that the relationship between the doctor and the patientis a medical interaction but that it can also play an important role within the wider socialcontext. He states that often when people with a chronic illness or disability consult a doctorit is for non-medical reasons, such as a doctor examining an employee for benefits or sickleave authorisation. Silverman (1987) suggests further that chronically ill patients with anexpertise acquired through experience are one of the groups that are beginning to challengethe power of the medical profession. This ties in with work on the development of an‘Expert Patient’ programme (Bury 2010) and empowerment (Asimakopoulou 2007, 2010)which are explored later in the chapter.

The interpretative approach

Interpretative studies focus on the ways in which people understand health and illness and theconcomitant interactions between the individual and society (Radley 1994). The social dis-advantage accredited to people with a long-term disabling condition is seen as resulting fromthe ways in which the individual interacts with society and vice versa (Williams and Wood1988). The interpretative approach focuses on the complexities of the subjective experience oflong-term conditions in everyday life for the individual and those within their social network.Experiential research looks at interaction and negotiation (Glaser and Strauss 1965; Roth 1963),coping strategies, the cultural and organisational demands placed on the family, and the socialfactors which may influence the experience such as gender, ethnicity, age and stage in the lifecycle. All aspects of life with a long-term disabling condition are assessed from the perspectiveof the individual and the family, looking at the subjective responses to constraints at home, atwork and in all other aspects of life experience. The final focus of this approach is to look atthe long-term impact of long-term conditions on people’s lives and the way in whichpriorities, problems and strategies change as the disease process progresses.

Advocates of this approach suggest that broad studies on disablement often fail to look atthe subjective experiences of people with disabling conditions (Anderson and Bury 1998),leading to a body of research focusing on the experiences of people living with a range oflong-term disabling conditions; for example: epilepsy (Schneider and Conrad 1983; Scamblerand Hopkins 1986; Scambler 1989, 1998), multiple sclerosis (Strauss 1984; Robinson 1988,


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1998), Parkinson’s disease (Singer 1973, 1974; Pinder 1998), rectal cancer (Macdonald 1998),psoriasis (Jobling 1998), arthritis (Bury 1998), tuberculosis (Roth 1963) motor neurone disease(Locock et al. 2009) diabetes (Balfe 2007) and HIV and AIDS (Aggleton et al. 1989; Ridge et al.2008; Harris 2009). The findings of these studies led to the development of the key themes.

The social constructionist approach

Stemming from the work of Foucault (1965, 1976), the social constructionist approach looksat the changing nature of disease through the different ways in which the body has beenunderstood throughout history. This approach to the study of long-term disabling conditionsfocuses on the increased importance of the ‘body’ in a consumer culture, the emphasis onlooking good and the implications of this for the disabled body:

The rise of commodity culture to prominence in western societies has resulted in theageing body and the disabled body becoming sources of great anxiety. A body thatdoes not function ‘normally’ or appear ‘normal’, that is confined to a wheelchair orbed, is both visually and conceptually out-of-place, as evidenced by the lack of publicfacilities for people with disabilities or the elderly.

(Lupton 1994: 38)

At the same time, the body, now required to be perfect, is provided with all kinds ofopportunities for improvement from medical technology to an endless stream of diet andfitness regimes.

Implicit throughout this literature is the idea that weak, unattractive or disabled bodies arerejected or avoided as distasteful. Healthy, ‘able’ bodies are seen as morally superior (Elias1978). Nettleton (1995) highlights the implications of this in overcoming shame andembarrassment both for disabled people and those who assist them with intimate or personalcare. In addition, the work of Sacks (1984), Charmaz (1987) and Mathieson and Stam (1995)identifies the effect that the onset of illness has on body consciousness and the awareness thatthe body is not functioning in the way that is expected of it. Barnes et al. (1999) see the socialconstructionist approach as disregarding the biomedical view of the body and refocusing onthe way in which the body is created through discourse and language. Thus the impairmentbecomes secondary to the effect it has on discourse.

Key themes within a sociological understanding of chronic illness

The features which are common to the experience of chronic illness in everyday life cover abroad spectrum. As identified by Turk these features provide a common framework ofunderstanding around what it is to have a chronic illness.

All chronic illnesses represent assaults on multiple areas of functioning, not just thebody. Patients with various chronic illnesses may face separation from family,friends, and other sources of gratification; loss of key roles; disruption of plans forthe future; assault on self-images and self-esteem; uncertain and unpredictablefutures; distressing emotions such as anxiety, depression, resentment and helplessness;as well as such illness related factors as permanent changes in physical appearance or inbodily functioning.

(1979: 291).


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These features appear in the many studies that have been carried out and can be condensedinto four key areas: uncertain and unpredictable futures; impact on social relations; assaults onself-image and self-esteem; and biomedical concerns (Scambler 2018).

Uncertain and unpredictable futures

Uncertainty in relation to the disease aetiology, trajectory and the future of the person withthe diagnosis are common to many long-term conditions. The dual uncertainty of aetiologyand trajectory can be found in the experiences of people with multiple sclerosis (Robinson1998) and arthritis (Anderson 1998) where it is difficult to know from day to day howsymptoms will affect people and what activities they will and will not be able to undertake.With Parkinson’s disease there is the added uncertainty relating to whether symptoms aredisease- or drug-related (Pinder 1990). Uncertainty about trajectory can be highlightedthrough work on the experiences of people living with HIV/AIDS. Research shows thataffected people do not know how long they will remain asymptomatic before they developAIDS or if they will indeed develop AIDS, and if they do there is uncertainty about lifeexpectancy and the likelihood that the disease will lead to an early death. Early research inthe area focused on uncertainty about how long a person would live before they died(Aggleton and Thomas 1988) whereas more recent research highlights the challenges forhealth care professionals people who have been living with HIV for decades and are nowreaching old age and it is not yet clear what their needs will be and how these should best bemet (Cahill and Valdez 2012).

Where uncertainty is rife prior to diagnosis, the diagnosis may even be welcomed as alegitimisation of experiences (Robinson 1988). The legitimisation of the sick role can alsoalleviate the guilt over not being able to perform everyday tasks (Badura and Waltz, 1984;Mayou 1986; Brown et al. 1981). In addition, it is suggested that, even when the end resultof the condition – i.e. slow degeneration and death – is known, there may still be a great dealof uncertainty concerning when and how degeneration will occur (Hobbs and Perrin 1985;Scambler and Newton 2010).

Impact on social relations

It is widely recognised that chronic long-term conditions affect the whole family and not justthe person who has the illness. Care and rehabilitation are the main roles undertaken byfamilies (Smith 1979; Anderson 1998) and can result in exhaustion, social isolation, depres-sion and financial hardship when intensive or full-time care is needed. Anderson and Burysuggest, further, that a chronic illness can have a more significant effect on family life androles, and if it is the principal female who is ill this can cause changes in traditional domesticroles and have a huge impact on the life of the family unit (1998). In addition to this,chronically ill women are more likely to be abandoned and are more likely to live longer andbe alone when they experience chronic illness (Anderson and Bury 1998). It is widelyrecognised that long-term disabling illness has an impact on finances and employment,effecting both immediate costs and long-term employment prospects (Conover 1973;Townsend 1979; Whitehead 1987). Interestingly, and unlike the literature on parent carersand disability more widely, positive aspects of having family members with long-termconditions rarely appear in the literature.

Another effect of chronic illness on social relations can be seen in the work on stigma. Ithas been suggested that the potential spoiling of identity through the negative reactions of


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others to changes in normal bodily or behavioural experiences is at the centre of much of theperceived misery of long-term disabling conditions (Anderson and Bury 1998). The very actof being labelled as epileptic was reported to be distressing in one study with acquisition ofthe label challenging people’s image of themselves as ‘normal’ (Scambler 1989). Here, thefear of stigma, ‘felt’ stigma, was far more predominant than actual acts of stigmatisation,‘enacted’ stigma. Private fear and public enactment were also themes in the work of Kelly(1992a, 1992b) who identified difficulties in managing the private and public identity inpeople who had undergone illeostomies. The challenge of coping with private changes inbodily function and image along with public perceptions and stigmatising attitudes werehighlighted. This ties in with a perceived link between health and ‘moral worth’ (Cornwell1984) which is prevalent in early work on the experiences of people with HIV/AIDS(Aggleton and Thomas 1988; Aggleton et al. 1989, Green and Platt 1997). In her work on‘dread diseases’, Susan Sontag (1991) highlights the public perceptions of diseases in societyand the moral judgements associated with different conditions, such as fear, pity and con-tempt. Negative perceptions are temporal and the specific conditions viewed negatively canchange over time. In a recent study of HIV and diabetes disclosure in dental histories, forexample, Edwards et al. (2013) found that historically HIV had been seen as stigmatising butthere was acknowledgement that attitudes had improved over the past two decades alongwith improved treatment and increased knowledge about the condition and its transmission.

Assaults on self-image and self esteem

Biographical disruption, on diagnosis, can affect the self-image and public image of a persondiagnosed with a long-term disabling condition, causing them to rethink their past, present andfuture (Bury 1997). Bury suggests a need to construct an account of what has happened andwhy and to seek legitimisation for the condition and the lifestyle changes it necessitates. Incontrast, Bloom, through his analysis of the experience of a woman with kidney disease andcancer (1992) charts a progression from the ‘dys-embodied self’ through reflexive self-awarenessto a realignment. On a cautionary note, such negotiated settlements can be temporary andfragile (Williams 1996) and are liable to change over time (Pinder 1998). Assaults on self-imageare foregrounded in research on people living with facial difference. Research on the experi-ences of people living with cleft lip and palate, for example, consistently reports an impact onself-confidence and self-esteem alongside experiences of felt and enacted stigma. The partici-pants in a study by Abualfaraj et al. (2017), for example, linked their low self-confidenceexplicitly to looking, sounding (in some cases) and being treated as different from their peers.This ties in with Patrick et al.’s (2007) work which found that up to one-third of young people(aged between 11 and 18 years) with congenital ‘facial differences’ experienced enacted stigmain a variety of forms including being teased, stared at, called names and physically assaulted.

Biomedical concerns

Diagnosis of a long-term condition often necessitates close contact with doctors, hospitals andthe biomedical world. This can take the form of direct medical interventions or the need forinformation. The difficulties posed by direct medical interventions and the importance ofmanaging a complex medical regime is explored in relation to Parkinson’s disease wherethere is the need to balance the control of symptoms with the management of complex drugregimes and the need to cope with the symptoms caused by the disease and the additionalsymptoms caused by the drugs taken to control the disease (Pinder 1998). In his work on


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psoriasis, Jobling (1998) goes on to describe the way in which the treatment regime cancome to dominate the everyday lives of people living with the condition and the need tobalance the benefits and costs of treatment. He also highlights the need for negotiationbetween doctors and patients as to the regime followed and how it should be managed.Time spent on managing a complex medical regime cannot be spent on other more enjoy-able things (Locker 1983). Research suggests that people with long-term disabling conditionsare less satisfied with their doctor/patient relationships than with any other aspect of care(Fitzpatrick 1990). In addition, there is dissatisfaction with information provided by doctors(Patrick et al. 1983, Macdonald 1998) communication skills and approachability (Harding andModell 1985; Cooper and Huitson 1986) and a recognition that patients should be partnersin care (Schneider and Conrad 1983). The recent emergence of ‘empowerment’ as a form ofpatient/doctor partnership is critiqued later in the chapter.

What can be seen from this brief and selective summary of the sociological literature onlong-term disabling conditions is that the everyday experiences of people living with a vastrange of different conditions have been explored in some detail and from a variety of per-spectives. It is also apparent, however, that the focus of the vast majority of this work is on thenegative implications of long-term disabling conditions and the ‘coping’ skills necessary fordealing with them. There is little evidence here of the type of political or oppression-basedapproach that is more familiar in disability studies. This has led to the allegation that sociologyhas fallen into the medicalisation trap; while purporting to challenge the dominance of bio-medicine there is a widespread, if unintentional, view of long-term disabling conditions asnegative. This said, the reverse may be true in that, while purporting to champion the cause ofdisabled people, disability studies has largely focused on relatively static, non-disease-linkeddisabilities and has sidelined the huge numbers of disabled people who are disabled throughlong-term, often degenerative, conditions.

Locating chronc illness in disability studies

Many of the themes highlighted in relation to the literature on long-term disabling conditionscan also be found within the wider disability literature. The concepts of ‘normalisation’,‘identity’ and ‘stigma’ for example, play key roles in current debates about disability politics andthe identity of disabled people. This said, it has been suggested that the political aim forequality, while clearly justified, has led to a failure to acknowledge feelings of loss, pain andexperienced by some (Scambler 2005; Watermeyer 2009) in favour of the positive experiences(Morris 1989; Oliver 1990) of others. As Watermeyer suggests:

Of concern is the possible extent to which such constructions – politically highlynecessary – require a purging of accounts of disability which do carry aspects of lossand struggle. As has oft been pointed out, the question of whether such struggles areconstrued as attributable to impairment or disabling barriers remains of key politicalsignificance. However, disability research which expressly eschews loss serves tocollude with the perpetuation of the false binary opposition, which, again, embodiesa silencing of real lives.

(2009: 97–98)

Clearly there are studies looking at the experiences of people with long-term conditions froma disability studies perspective (see, for example, Blackford 1999; Moss et al. 2004; Dyson et

al. 2007; Kendall and Rogers 2007; Allred 2009) these disabilities are still hugely under-


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represented in the wider literature. Finding a place for these types of disabilities requires amove to bridge the gap between the ‘coping/loss’ and ‘oppression’ paradigms, often pre-sented as binary opposites.

There is a growing awareness within both sociology and disability studies of the possiblemerits of these opposing traditions alongside long-standing disputes about the politicalimplications of each approach, and recent work from both sides of the divide has sought tochallenge existing orthodoxies. The most obvious example here is the work of Carol Thomas(2007) in which she seeks to lay out a systematic argument for a more oppression-awareapproach to the sociological study of disabled people (see also Thomas 2004, 2010). Again,from a disabilities studies perspective, Shakespeare (2006) sought to openly acknowledge theimportance of pain, loss and negative experiences in the daily lives of disabled people relateddirectly to the particular impairments that they live with rather than as a result of oppressionthey experience. Examples can also be found from a sociological perspective where, in a re-theorisation of stigma, for example, Scambler (2009) suggests that a reframing of relations ofstigma as ‘cultural norms of shame or blame’ may be more helpful in integrating rival para-digms of sociology and disability studies and allowing for coping and oppression. In a recentbook (Scambler and Scambler 2010a), we also sought to draw together experts from thesociological and disability studies perspectives to open a dialogue between the disciplines andmove towards a resolution of differences in approach (ibid. 2010b).

Challenging questions

So, what can the study of long-term disabling conditions add to our understanding of dis-ability and the lives of disabled people? As previously stated, it would be relatively simple,and justifiable, to make the argument that these types of disabilities should take on a moresignificant role within disability studies simply through prevalence. I want to suggest further,however, that the study of long-term disabling conditions and the people who live withthem on a daily basis can offer fresh insights into existing debates within the field of disabilitystudies. To illustrate this point, two case studies are presented. The first explores the conceptsof empowerment and self-management within health care policy and practice and the impactof this on the provision of care for people living with diabetes, positing this as a medicalisationof anti-oppression approaches. The second revisits the debate around the relative importance ofimpairment, biology and the body with the aid of work on batten disease, a long-term, lifelimiting condition resulting in multiple disabilities.

Empowerment, diabetes and the medicalisation and state sponsorship of‘anti-oppression’ measures

Empowerment can be defined a process of education and skill development which enablespeople with long-term conditions to take responsibility for the daily management of their illness.The formal idea of self-management was introduced into the UK National Health Service(NHS) with the NHS Improvement Plan (Department of Health 2004). This document laid outa model of care based on a Californian plan to provide health care for people with long-termconditions. The ‘Kaiser’ model incorporated three levels of care with high-risk patients receivingprofessional care, a ‘shared care’ approach for those in the middle, and self-management for thelow-risk majority (Bury 2010). This model was deemed successful in California and ‘ChronicDisease Self-Management’ programmes were put in place with the aim of ‘giving patients theknowledge and skills to manage their illness daily’ (Lorig 2002: 814).


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The self-management/empowerment approach to the provision of care for people withlong-term conditions has been adopted across the NHS, at least in principle. One example ofthe model in practice can be found in the development of diabetes care. In Kaiser modelstyle, high-risk patients and those with complications are seen in the diabetes clinic, patientswho, for whatever reason, are not achieving good symptom control are seen by DiabetesNurse Specialists to develop a shared care plan, set targets and be ‘empowered’, and low-riskpatients attend, or are invited to attend, education courses and access community services asand when needed. A collaborative of NHS organisations (The DESMOND Collaborative2008) has put together a series of education programmes for people with diabetes, ‘DiabetesEducation and Self-Management for Ongoing and Diagnosed’ (DESMOND), and nurses andother allied health professionals are being trained in how to carry through this programme.Empowerment is widely seen as a positive move within diabetes care as it heralds a moveaway from the patriarchal notion of ‘compliance’ to a more patient centred notion of self-management (Asimakopoulou 2007). This ties in with the ideological shift towards consumerhealth care and patient choice that was championed by the New Labour government. Thiscan be seen as a positive move in recognising the knowledge and skill which develop in thecourse of living with a long-term condition and prioritising experiential expertise in daily lifeover medical interventions.

The problem with empowerment in diabetes care emerges when we try to define ‘successfulempowerment’. If empowerment is about giving people the skills with which to manage theirdisease then how do we judge whether the empowerment has been successful? What becomesclear if we look at the literature on empowerment in diabetes is that there is confusion anddisagreement not only about how success should be measured in relation to empowerment butabout what the term empowerment actually means (Asimakopoulou 2007, Asimakopoulou et

al. 2010, Anderson 2007; Adolffsson et al. 2004). In a recent study we looked at professionals’understandings of and attitudes towards empowerment in practice. In this qualitative study 13professionals involved in the specialist provision of care for people with diabetes were inter-viewed. The study considered both practical and organisational roles in acute and primarypractice within a specific location. What emerged from the interviews was that there was noclarity of shared understanding about what empowerment is and what it involves. In addition,there was disagreement about the level of freedom that patients should have when makingchoices, practice ranged from actively leading patients to the ‘correct’ choice to an acceptancethat a patient can make a conscious and informed decision not to make the ‘correct’ choice.There was no formal consensus on the definition or measure of ‘successful’ empowerment butbiochemical targets were used as the main tool in ascertaining success. In this study the rhetoricstarted with talk of giving patients the tools with which to manage their own illnesses andended with acknowledgement that in practice patients were coached in how to meet bio-chemical targets (Scambler et al. 2010). Patient choice and control turns to disease managementand biochemical symptom control.

The debate about empowerment and self-management illustrates the tension between policyinitiatives and the lived experience of long-term conditions. Evidence suggests that these pro-grammes are less effective than was hoped in managing long-term conditions (Newbould et al.2006; Newman et al. 2004) and have not reduced the demand for health services. This bringsinto question the continued state support for empowerment and self-management pro-grammes. Building on his categorisation of an ideological shift to patient-centred rhetoric as ameans of disguising the failure of biomedicine in dealing with long-term conditions, Bury(2010) suggests that the rhetoric has changed. He illustrates how terms and concepts that wereinitially used to challenge the state sponsored dominance of biomedicine have been colonised


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by the very system they sought to challenge: ‘where once the ‘new age’ rhetoric of personalgrowth, autonomy, empowerment and the like were used by social movements to challengestate controlled bureaucratic structures and systems, today they have become part and parcel ofstate activity itself’ (Bury 2010: 176). He goes on to suggest that this kind of rhetoric canbe seen as a way of placing the patient at the centre of care or as a way of glossing over thecomplexities of living with conditions of this kind over an extended period of time and thevery real need for quality health care.

I would go further to suggest that the promotion of the self-management and empower-ment agendas conceals a yet deeper agenda. By promoting the idea that patients are in controland make choices over their care which affect the likelihood of achieving symptom control(self-management), whilst maintaining control over the mechanisms through which the‘success’ of this self-management is measured, the power of the patient choice/shareddecision-making/empowerment agenda is neutralised. Empowerment cannot be used as away to fight the oppression of the power of biomedicine over the lives of people withlong-term disabling conditions if the very measures used to judge the success or failure ofempowerment are biomedical. The social power of these concepts is negated.

Batten disease and the primacy of the biological

A second case study to illustrate the role that research on long-term conditions can play infurthering disability debates concerns the interface between disability, impairment, biologyand the body. Batten disease is the common name for the group of rare, genetic, neurode-generative, metabolic diseases that can be found in both children and adults across the world.At present, nine different forms of Batten disease have been identified with four main types,four variants and a congenital form of the disease (Batten Disease Family Association 2008).While age at onset, life expectancy, progress of symptoms and genetic causes vary by diseasetype, the group of diseases share broadly similar symptoms which include epilepsy, visualimpairment, cognitive and motor degeneration (including the loss of the ability to walk, eatand talk) and a shortened life expectancy (Scriver et al. 2001). This said, people with thejuvenile form of the disease can live for more than 20 years post-diagnosis. The last twodecades have seen significant changes in the care available for children and young peoplewith Batten disease. The mechanisms through which these conditions are diagnosed, thedrugs available for seizures and other symptom control and nutritional management strategieshave all evolved. Work is well underway to develop gene therapies for some variants ofBatten disease; however, ‘at present there is no cure or treatment that makes a significantimpact on the progressive decline in bodily functions and inevitable early death’ (BattenDisease Family Association 2008).

I have previously contended that the reality of Batten disease poses a challenge to argumentsabout the social construction of disability (Scambler 2005) and the separation of impairmentand disability (Scambler and Newton 2010). The physical reality of the symptoms of Battendisease is such that it cannot be less significant than the social reality of living with the disease.In later stages of the disease process it would not be unusual to meet a young adult with thejuvenile form of the disease who is unable to walk or talk, has a gastrostomy, is doublyincontinent, with little control over facial expression, a very limited short-term memory, andwho has epilepsy and terrifying hallucinations. The impaired body cannot be separated fromthe lived experience of the disease. The social reality of living on a daily basis with this diseaseis an embodied experience that is significantly shaped and curtailed by the nature and func-tioning of the body in which it is experienced. The role of the physical body and the


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impairments at the heart of people’s experiences of disabilities also need to be taken intoaccount. There is a multifaceted and multilayered effect which can be causally attributed to thebiological attributes of the disease but is biological, social and psychological in its impact. Thebiological impact of the disease is both direct in its determination of the symptoms of the diseaseitself and the nature of the trajectory, and indirect in its impact on every, or almost every, aspectof daily life. Even the direct biological impact of the disease spreads far beyond the affected,diagnosed individual. The hereditary nature of Batten disease spreads the direct biological impactto siblings and extended family members as well as potentially to future generations through anetwork of carrier, post and prenatal testing (Scambler and Newton 2010).

The impairment/disability, or biology/oppression debate is one which is currently beingexplored by writers such as Hughes (2004), who charts the often contrary relationship betweenmedical sociology and disability studies, focusing on the role of impairment as the way ofmaking a valuable connection between the two disciplines. Hughes makes the argument that,at the very point where sociologists were moving to develop an understanding of the embo-died nature of social action, disability studies was moving to exclude the body and impairmentfrom the discourse around disability and focus solely on the social construction of disability. Hesuggests we need to move towards a ‘post-Cartesian’ position where the somatic nature ofsociety is accepted and we come to see disability as embodied and impairment as social.

This thesis extends possibilities for a shared understanding and synthesis between the bodiesof knowledge developed through disability studies and medical sociology and strengthens thecase for the importance of long-term disabling conditions in adding to our understanding ofthis debate. This is a position which reiterates the need, as articulated by Corker and French(1999), for more work, such as that by Hughes, examining the permeable boundary betweenthe physical embodied experience of disability and the social experience of disability and theways in which the two impact on one another. It is a challenge that has been taken up bywriters such as Sherry (2002, cited in Shakespeare 2006) who drew on interviews withpeople with acquired brain injury to suggest that a range of experiences are presented whichcannot be classified as ‘either’ impairment ‘or’ disability. He proposed that these categoriesare best conceptualised as a fluid continuum rather than a dichotomy. A similar conclusionwas reached by (Lock et al. 2005) in their work on the experiences of stroke survivors. Sha-kespeare suggests that ‘any qualitative research with disabled people will inevitably reveal thedifficulty of distinguishing impairment and disability (2006: 37).

We have added to this debate in a study which uses the theory of Bourdieu to encapsulatethe inherently biological assault on the lifeworld caused by chronic disabling conditionswhich result in profound and/or multiple disabilities. To use the more traditionally foughtdichotomy between impairment and disability, we suggest that, in these extreme conditions,both impairment and social oppression play a role in the assault on the lifeworld, but that theimpairment is predominant and shapes even the experiences of social oppression (Scamblerand Newton 2010). Shakespeare suggests that there are two important features of impairmentwhich need to be addressed when looking at the wider picture.

First, there is a hierarchy of impairment: different impairments have differentimpacts, and the same impairment can have different effects. Second, mild tomoderate impairment may not be a difficulty for anyone, given supportive andflexible environments prepared to respect and value difference. However, severeforms of impairment will often cause considerable problems and limitations andsometimes suffering and distress for individuals and their families. The goal of pro-moting cultural respect and social acceptance for people with impairment should


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not distract us from the importance of mitigating or preventing impairment viaindividual medical or psychological therapies.

(Shakespeare 2006: 116)

We contest that Batten disease is one such ‘severe form of impairment’ and would go sofar as to suggest that the social effects of the oppression are, in this case, secondary to thebiological effects of the disease itself.

Future directions and collaborations

Long-term disabling conditions are the main cause of disability in the developed world and yet,as illustrated in the first part of this chapter, they are largely absent from mainstream disabilitytheory. The specific, empirically based, examples cited above illustrate the important con-tribution that the study of long-term disabling conditions can make to our understanding ofdisability and the social/oppression/disability theory approach to disability. Small but increasingnumbers of medical sociologists and disability theorists are making the case for a collaborationbetween these disciplines (Thomas 2004, 2010; Scambler and Scambler 2010; Shakespeare2006; Sherry 2016) with the aim of mutual learning and a more multidimensional view of thedisability/society/biomedicine divide.

The examples cited in this chapter give a very brief glimpse of the depth of sociologicalresearch exploring the experiences of people living with long-term conditions. In recent worklooking to move the disability debate beyond a focus on models and towards acceptance of therole of impairment in the lives of disabled people, Shakespeare and Watson (2010) call forresearch that focuses on ‘what disabled people say and think, not what we might wish theyshould say and think’. They elaborate: ‘Accusing disabled people of false consciousness, or wait-ing for them to see the light of the social model, is not adequate or appropriate’ (ibid.: 72). Thesociological tradition focuses on exploring what people with long-term disabling conditionsthink and how they experience daily life. A wealth of research which explores what disabledpeople say and think already exists and needs acknowledgement and incorporation into thewider debates. At the same time, as Thomas (2010) suggests, sociologists working in the field oflong-term conditions need to be more aware of the prevailing deviance paradigm within medicalsociology and to incorporate the social oppression paradigm. This is echoed by Sherry (2016),who argues that the impaired body is both socially created and culturally constructed and ispolitically significant in legal and policy terms as well as in relation to personal identity politics.Incorporating the sociological study of impairment into our understanding of the experiences ofpeople living with long term disabling conditions, he argues, is not simply a move back towards amedical model of disability. In the words of Sherry, it offers a link between embodiment, iden-tity, inequality, and the politics of resource allocation and activism (2016: 739).

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14

CRITICAL REALISM AS THEFOURTH ‘WAVE’

Deepening and broadening social perspectives onmental distress

Richard Brunner

Introduction

Social understandings of mental distress have held persistent tensions with concepts used indisability studies. One means to advance stronger conceptual alliance is through critical realism.This chapter demonstrates how the application of critical realist meta-theory enables us todeepen and broaden our level of explanation when conducting empirical research with peoplewith mental distress. In the process, the chapter shows how critical realism offers a normativebridge between social understandings of mental distress and disability studies.

The chapter first describes three ‘waves’ of social research about mental distress, all ofwhich are responses to the dominant biomedical model. It has a particular focus on survivorperspectives. The chapter then describes a fourth, emergent contemporary critical realistwave. It goes on to use the example of a recent study that uses the Capabilities Approach, aframework compatible with previous waves of social research on mental distress, to explorelived experience. The chapter shows that while the study took the analysis to a considerabledepth of understanding, engaging critical realism enabled less reductionism and in particularoffered a wider and deeper analysis of cause. The chapter concludes with speculations on thepotential for critical realism to boundary-span social research in disability and social perspectiveson mental distress.

Throughout the chapter I have chosen to use terms favoured by the psychiatric user/survivormovement and for this reason have opted to use ‘mental distress’ alongside the terms ‘serviceuser’ and ‘survivor’ (Beresford 2002: 582; Tew 2011: 5; Plumb 2012: 20).

Why and how social research explores mental distress

The ongoing disadvantages experienced by people with mental distress

People with mental distress are more likely to be disadvantaged and to live in disadvantagedareas. In Britain, around one person in six experiences mental distress (McManus et al. 2016).

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Social surveys consistently suggest that people with psychiatric diagnoses are more likelythan others to live in disadvantaged areas (Tew 2011: 37), to live in relative poverty(Rethink 2003), to be victims of violence (Office of the Deputy Prime Minister 2004: 25),to have financial problems (ibid.: 85), and to have less access to employment (ibid.: 1).They tend to experience discrimination and prejudice (ibid.: 24) and are hugely over-represented in prisons (e.g. Bradley Report, 2009: 8–9). Large-scale studies persistentlydemonstrate that people with mental distress in Britain are disadvantaged in terms of health,employment, income, housing and family life (Wilkinson and Pickett 2009; WHO 2004,2010). The contemporary acceleration in social and economic inequality is increasingexperiences of mental distress even further, especially for disadvantaged people (Wilkinsonand Pickett 2009, 2018). Sociological evidence has established that mental distress has asocial genesis as well as a social gradient (e.g. Brown and Harris 1978; Rogers and Pilgrim2003) and these are exacerbated by poverty (Dorling 2015). There is a strong spatialdimension to the social gradient. In Scotland, for example, the incidence of commonmental health problems is twice as high in the most deprived fifth of the Scottish Index ofMultiple Deprivation quintiles as in the least deprived fifth (Millard and McCartney 2015).So, the drivers and experiences of disadvantage for people with mental distress are stronglyestablished across multiple domains.

The fatal flaws of the dominant biomedical model

The dominant principle of psychiatric treatment and support assumes that people withmental distress will achieve better outcomes through medicalised diagnosis and treatmentapproaches, founded on models from physical health (Pilgrim 2015). Generations of thismedicalised process throughout the twentieth century have provided some benefits forpeople with mental distress (e.g. Stalker et al. 2005; Bentall 2009: 219–221) and peoplewith mental distress are now spending less time in segregated institutions (ibid.: 42–44).However, the predominant biomedical model, the narrow interests of the pharmaceuticalindustry, and the contemporary genetic focus do not address the social determinants that shapethe incidence of mental distress or the inequalities experienced by people with mental distress(Busfield 2011; Rose 2019). While the flawed biopsychosocial approach has been modified inresponse to neuroscientific developments, with the potential for societal and environmentaldrivers of mental distress to be integrated (ibid.: 90–91; Pilgrim 2015: 144–146), it remainsdominated by the psy-professions, with a residual reductionist understanding (ibid.: 29–36). Asseen above, it takes a sociological approach to influence what Marmot and Wilkinson (1999)term the ‘causes of the causes’. Authorities from varying perspectives (e.g. Rogers and Pilgrim2003; Bracken et al. 2012; Division of Clinical Psychology 2013) now argue that in order tochange outcomes it is timely for a re-theorisation of the problem, its causes and potentialsolutions, incorporating analysis at the personal, social and structural level.

The first three ‘waves’ of social research about mental distress

The dominant biomedical paradigm has long been subject to ‘sedimented layers’ (Rogers andPilgrim, 2010: 11), or ‘waves’ of sociologically founded critique. First, conflict theory-basedstructuralism challenged dominant social norms and the professional powers that shape pooroutcomes. This is embodied in the seminal sociopolitical analysis of Foucault (e.g. 1967),bringing a distinct historical and structural explanation of how power is reproduced through

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psychiatric systems combined with dominant social norms. Second, symbolic interactionistand social constructivist studies reinforced these findings at a micro level, popularised bySzasz’s deconstruction of the notion of ‘mental illness’ in itself, and highlighted the way inwhich certain behaviours break dominant social, political and ethical norms (1960; see alsoGoffman 1961; Scheff 1966). Scambler notes the need to keep both foci in play: ‘Structural-functionalist analyses of systems are qualified but cannot be displaced by interactionist analysesof the lifeworld’ (2018: 34). These critiques emerged from academic and psy-professionalsources. The voices of people with experience of using the psychiatric system came to thefore with the third wave of ‘survivor’-influenced social perspectives (e.g. Chamberlin 1978).These emerged during the late 1960s and early 1970s, alongside other identity-based libera-tion movements, including that of disabled people (Beresford 2012; Menzies et al. 2013). Inmental health, survivor perspectives have acted as a ‘countervailing force to experts’ controland production of knowledge’, including within sociology (Rogers and Pilgrim 2003: 186,2010: ch. 11), as described in the next section.

The development and impact of survivor-led research

Survivor-influenced studies have taken up the challenge of trying to create the analytical basefrom which a new paradigm may emerge that fully incorporates lived experiences. Beresfordand Wallcraft posit that survivor-led research has challenged the biomedical paradigm byavoiding medical concepts and language as damaging and stigmatising, and using the conceptof ‘crisis’ or distress rather than ‘mental illness’(1997: 78). Survivor perspectives have inter-preted hearing voices as phenomena with a number of possible explanations, rather than assymptoms of ‘psychotic illness’ (e.g. Romme and Escher 1993). For Tew, the service usermovement has ‘been most influential in driving current debates’ about the nature andmeaning of mental distress (2011: 27). These new knowledge claims have now fed into cri-tical psychology and critical psychiatry (e.g. Dowrick 2009; Bracken et al. 2012; Division ofClinical Psychology 2013), while there has also been a resurgence of bio-reductionism,driven by neuroscience and political individualisation (Pilgrim 2015: ch. 5).

In terms of theoretical contributions, Beresford has argued that social perspectives ofmental distress highlight ‘improved understanding of the social origins of impairment andimpairment as a social construction’ (2000: 170, emphasis in the original). Thus, he argues for asurvivor approach that is, in Rogers and Pilgrim’s (2010) terms, both socially causative andsocially constructivist, and consistent with the sociologies of Szasz and Foucault, for example.For Plumb too, the survivor movement comprises people with mental distress who are sur-vivors in several dimensions – of the psychiatric system, of social structures and institutions,and of cultural practices and values, having regard to the dominant social norms of concernto Foucault (1993: 170). Compatible with these values, Menzies et al. (2013) frame the allied‘mad studies’ – a ‘re-born, rights-based anti-psychiatry’ (Rose 2019: 174) – as forming anormative sociology of knowledge with which to challenge both the dominant medicalmodel and the narrow dominant conception of ‘normality’.

So, survivor perspectives disrupt the dominant biomedical approach to interpreting mentaldistress and associated normative assumptions about systems and structures. Furthermore, theyprovide a framework to argue for wider social change in terms of both the drivers of mentaldistress and culturally engrained, excluding responses to expressions of mental distress. Sur-vivor perspectives have provided an ontological and epistemological response to dominantpsychiatric and epidemiological research that objectifies service users (Rogers and Pilgrim


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2010: 255). The focus of survivor-influenced approaches on oppression and discriminationhas been taken up by anti-stigma campaigners, while survivor-led critiques of diagnosis,medicalisation and coercion are now echoed by critical psychiatry.

Although they have been influential, survivor-founded empirical studies also face limita-tions. First, despite the fact that ‘most service users [have] internalised’ the medical model(Beresford et al. 2010: 30), survivor-influenced research rarely contains evidence and analysisfrom service users that have no critique to make of the mental health system. While Beres-ford has significantly progressed the underpinning values and principles of the survivorviewpoint, his empirical work can be opaque in terms of evidencing the range of participa-tion by people with mental distress (ibid.). Second, survivor-influenced research can also beambivalent about whether analysis of the subjective experience of mental distress matters, andinstead shifts the analytical focus onto the role of oppression by the psychiatric system, thussidestepping the issue of the ‘reality’ or otherwise of distress. But as Tew et al. argue (2006:11–13), this position is in conflict with taking user accounts seriously, and runs the risk ofallowing the analysis of the internal experience of mental distress to be dominated by themedical sciences.

Tew (2011), also influenced by survivor perspectives but writing for practitioners, pressesfor a more fluid social approach to mental distress. This constitutes a social explanation forthe onset of mental distress, which can then be accentuated by the social responses to theindividual with mental distress, thereby heightening the original experience of distress. Hissocial approach resonates with Beresford’s concern for the social consequences of being seenas ‘other’. However, Tew’s ‘triple whammy’ argument (ibid.: 104) – experiencing mentaldistress, experiencing stigma, then internalising stigma – risks reducing the ‘problems inliving’ (Szasz 1960) experienced by people with mental distress to stigmatisation, withouteffectively incorporating the implications of Szasz’s questioning of the underpinning con-ceptual framework of ‘mental illness’ or the role of dominant social norms stemming fromFoucault.

The understandable and necessary focus on critique of the dominant psychiatric modelcan lead survivor-influenced research to a position whereby any problems experienced bypeople with mental distress can appear to be solely due to their being labelled andoppressed by the psychiatric system. This also risks diminishing the multiple roles of widerinfluences on social injustice beyond the mental health system itself. However, in theircritical realist analysis, Rogers and Pilgrim argue that the foregrounding of the user voice asa countervailing force has led to studies that connect ‘with the broader everyday lifeexperiences of individuals’ (2003: 187), highlighting the navigation of identity in the con-text of psychiatric inpatient experience (e.g. Estroff 1981; Barham and Hayward 1991; Parr2008). Barham and Hayward’s often overlooked qualitative study in England revealscumulative social injustices following a stay in a psychiatric hospital, impacting variously onhousing security and choice, work and income, and human respect, which leave theirparticipants trapped between becoming a ‘person’ or a ‘patient’ (1991: 70). Their analysisachieves a sociological focus on dominant norms and social practices that tend towardsoppression while also attending to individual agency.

Despite the influence of survivor epistemologies, Beresford notes that they still lack a fra-mework with the liberational impact of the social model of disability, with the power toexplain disadvantage, and with the potential to transform the way that people with mentaldistress are perceived socially (2012: 159). Concurrently, Tew argues for the development of acoherent body of theory supported by evidence to explain the disadvantages experienced bypeople with mental distress (2011: 2). Critical realism offers a bridge towards this.


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The fourth ‘wave’: critical realism

Critical realism: the broad concepts

In response to these confluences, a fourth ‘wave’ critical realist ‘turn’ has emerged. Thisoffers the potential to unify earlier sociologies of mental distress by seeking to accom-modate both the materiality of mental distress and critical analysis of the interests servedby the way in which mental distress is conceptualised in society (Rogers and Pilgrim2003). This section outlines the core concepts underpinning critical realism, followingthe proposition by the school’s foundational thinker that one of the roles of philosophyis to act as ‘the under-labourer, and occasionally as the mid-wife, of science’ (Bhaskar1978: 10).

Archer et al. (2016) describe critical realism as ‘a meta-theoretical position: a reflexivephilosophical stance concerned with providing a philosophically informed account of sci-ence and social science which can in turn inform our empirical investigations’. Causalexplanations using critical realist meta-theory are based on an understanding that the socialworld includes underpinning social structures, powers and mechanisms (Porpora 1998;Bhaskar and Danermark 2006). For Bhaskar, the social world comprises three layers: theempirical (observably experienced); the actual (events and experiences caused by themechanisms of the real); and the real (containing causal mechanisms independent of ourperception) (Williams 1999: 806). In social research on mental distress, the real wouldaccount for dominant norms and established structures that value certain people, behavioursand practices, and devalue others; the actual would incorporate the contingent socialpractices that surround people with mental distress, including, for example, a medicalisedsystem, laws and guidance; and the empirical would include the bio-psycho-social realityof mental distress. Porpora argues that critical realism enables the arrangement of socialrelationships, structured by rules, norms and ideology, to be analysed non-deterministically(1998), accounting for the interaction of structure, rules and relationships with humanagency which together imperfectly reproduce social relations. In line with this, criticalrealism has a concern for both how lives are actually lived, or what people are disposed tobe and do (Bhaskar 1979: 123), alongside a normative aim of explaining social injustice forthe purpose of human emancipation (Watson 2012: 102).

Critical realism takes the position that the world is both constructed and material, and thattheory is essential for interpreting and explaining the relationship between construction andreality. Alongside this, critical realism accepts that subjectivity is important but is not ‘valuefree’ – i.e. theories of reality are socially constructed. In line with this, Rogers and Pilgrim seecritical realism as being able to challenge both the ontic fallacy of ignoring the cognitive andsocial mechanisms which produce knowledge from antecedent knowledge, and the epistemicfallacy of ‘assuming that reality is what we call it (in the case of diagnostic psychiatry‘schizophrenia’, ‘depression’ etc.)’ (2010: 18).

So, critical realist meta-theory maintains an openness to both agency and structure, anddescription and normativity. Research using critical realism demands methods that can accessdiscourses, perceptions and meanings, but which strive for objectivity within this, consistentwith the position that there is a material base beyond the discourse (Williams 1999). Thus,critical realism holds the potential to encompass the purview of survivor perspectives and alsostructuralist and symbolic interactionist traditions in mental health research, bringing the firstthree ‘waves’ together, while also facilitating a critique of biomedical and epidemiologicalpractices.


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Critical realism and disability studies

Critical realism has a long-standing presence in disability studies (e.g. Williams 1999; Watson2012). For Bhaskar and Danermark, using a social, medical or cultural framework for dis-ability research avoids analysis of the ‘essential complexity’ that critical realism enables (2006:295). I have set out above how this also applies to waves of research in mental distress.Widening their analytical lens using critical realist meta-theory, Bhaskar and Danermarkargue that physical, biological, physiological or medical/clinical, psychological, psychosocial,sociomaterial, sociocultural and normative laminates ‘are all essential to the understanding ofthe phenomena in fields such as disability research’ (ibid.: 289). While their analysis of asingle case study of a hidden impairment indicates the potential for applying this analyticalframework in primary research in disability studies, this provides a very limited example.

Critical realism as applied to mental distress

Several authors have used critical realism as a form of critique in social research about mentaldistress. Pilgrim and Bentall’s (1999) critical realist analysis reveals contradictions in medicaldefinitions of ‘depression’. Using critical realism to avert the epistemic fallacy and to chal-lenge biomedical assumptions, they suggest that ‘distress’ (ibid.: 267, 271) or ‘misery’ (ibid.:271, 272) are stronger epistemological starting points for understanding this dimension ofhuman experience. This argument reverts the character of sociological study back to theunderstood nature of humanity, also foci for Foucault (1967, 2009) and in a disability context, forNussbaum (2006).

Working with data from multiple sources, including lived experience, Rogers and Pilgrim(2003) use critical realist meta-theory to produce least reductionist analysis of social justiceand mental distress. Following Foucault, they find that in the mental health system powerimbalances sustain coercion by mirroring ‘(usually implicitly) the normative concerns of thesocial order both parties inhabit’. This implies that

[v]oluntary and coercive control coexist in psychiatric practice at any particular time…Thus, when any person presents themselves or is presented by others to psychiatricattention, they enter a social space in which an inequality of power operates.

(2003: 181)

However, unlike Foucault, because of their critical realist ontology, this is not the end of thestory. Like Foucault, they see madness as being elemental to the human condition (ibid.: 8).But they are also able to contextualise this by using data on social inequalities and personalvulnerabilities that may lead to particular social groups disproportionately experiencing ‘fearor misery’ (ibid.). And, unlike Foucault, their critical realism forces then to incorporate thenotion that there may be a role for psychiatry in this context: ‘Mad people break rules andmiserable people withdraw from their roles. When it is successful, psychiatry reverses thesesocial processes’ (ibid.: 182). Their critical realist analysis seeks to avoid reductionism, andthus macro-level data is included, which, for example, is marginalised in social constructionistaccounts. But they also bring in a critique of knowledge as a radical challenge to the medicalmodel.

More recently, and critiquing the sociology of Goffman, Scambler (2006) argues that acritical realist approach is required both to fully account for structure that shapes definitionsof the situation, and to allow for agency and contingency in ‘open systems’ that do not


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assume that people will behave according to their presumed social position. The extent towhich, for example, shame and stigma may be reproduced during social encounters, requiresa theory of exploitation and a theory of oppression. Critical realism offers such analyticalpotential. Pilgrim (2015) reinforces these theoretical and empirical compatibilities. He deli-vers an analysis that applies critical realism as a mechanism to highlight not only the limits ofpositivist biomedicalism, but also survivor studies that risk avoiding the issue that not allexperiences of mental distress are cause for ‘celebration’, and can be genuinely problematic atboth the individual and social level (ibid.: 136).

Critical realist meta-theory therefore has the potential to explore tensions within livedexperiences of mental distress that remain unresolved by narrower epistemological andontological claims. These include tensions between subjective experiences of mental distressand diagnosis of ‘mental illness’; oppressive versus supportive roles of the psychiatric system;the liberating versus the stigmatising impact of a diagnosis or label; and diverse social justiceexperiences related to experiencing mental distress in a specific social, economic and culturalcontext. However, in mental health it has primarily been applied to critique limits to existingepistemologies, rather than to frame primary social research.

Section summary

The review provided above has demonstrated that there is significant complementaritybetween the four ‘waves’ of social research on mental distress. Responding to the dominanceof the medical model and coercive dimensions of the psychiatric system, structuralist literatureprovided critical thinking on dominant social norms and professional powers that resulted insocial injustice, and social constructivist studies demonstrated the oppressive impact of these at amicro level. Both types of study then influenced the survivor-based literature, which has fore-grounded the voices of those experiencing the psychiatric system. The current critical realist‘turn’ aims to incorporate all perspectives, even the biomedical, while holding a normativepurpose to explain social injustice for the purpose of human emancipation. It has been used inthis way to challenge existing knowledge claims. The next section demonstrates how criticalrealism can also enhance primary social research in mental health, in this instance in a studyusing the Capabilities Approach as an analytical framework.

Using critical realism to enhance primary research in mental distress: anempirical example

While it is well established that people who have used the psychiatric system tend to havepoorer social outcomes than do the general population, this study sought a framework thatcould potentially encompass structural, social and personal dimensions in enabling under-standing of how divergent outcomes may happen for people with inpatient psychiatricexperience. The Capabilities Approach (Sen 1992) was applied to achieve this. The findingswere then re-interpreted using critical realism to seek a least reductive analysis.

The Capabilities Approach has been used many times to frame disability research foundedon social model values (e.g. Burchardt 2004; Mitra 2006, 2017; Dubois and Trani 2009;Riddle 2010; Trani 2011). However, despite cogent arguments advocating its potential inmental health (e.g. Hopper 2007; Wallcraft and Hopper 2015), empirical studies are onlynow starting to emerge (e.g. Tang 2017).

This section first shows how the Capabilities Approach is compatible with the three‘waves’ of research exploring lived experiences of mental distress. It then indicates how in the


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study the Capabilities Approach described and conceptualised social disadvantages faced byparticipants with mental distress. Finally, it demonstrates how critical realism enhanced theanalysis in terms of explanation of social outcomes, in terms of accounting for the explanatoryinfluence of underpinning social structures, powers and mechanisms.

The Capabilities Approach

Founded on a concern for universal human flourishing, the Capabilities Approach is aninternationally established multidimensional framework to understand quality of life in termsof actual lived outcomes and substantive freedom. In the Capabilities Approach, the fore-grounding not only of ‘functionings’ – what people are doing – but also ‘capabilities’ – whatpeople could alternatively do – provides a methodological innovation for exploring how tounderstand and change poor outcomes (Brunner 2017). It incorporates an ethic of equity,ascribes value to personal agency, and recognises the role of resources (Sen 1980). Agency isof particular significance in the lives of people with mental distress for whom there exists ahistory of coercion and enforced or de facto enforced treatment based on a medical model,described by Davidson et al.:

the precondition held out for people with serious mental illnesses has been the needfor them to be cured of their illnesses or to become ‘normal’ before they can rejoincommunity life. A capabilities approach asserts to the contrary that it is only throughparticipation in community life as self-determined agents that people with mentalillnesses will acquire the capabilities needed to manage their conditions.

(2009: 41–42)

Davidson et al. (1996) found that the loss of freedom and autonomy was the most problematicissue for people with mental distress during a long-term hospital stay. Although the Cap-abilities Approach holds that agency is vital to well-being, it also acknowledges that agency issocially situated. Adaptive preferences (Sen 1992: 149) are acknowledged as a barrier toachieving good social outcomes: life goals adapt to the level that people understand we canachieve. For example, people with mental distress may be told ‘you will never work again’.More subtly, it may mean internalising dominant social norms about personal behaviours thatrestrict the ability to act freely in public.

In order to improve social outcomes, in the Capabilities Approach ‘conversion factors’mediate peoples’ personal interests and potentials at the personal, social and environmental orstructural level (Brunner and Watson 2015). Conversion factors at all three levels may actpositively or negatively, either constraining or enhancing the likelihood of individuals andcommunities experiencing good social outcomes.

The Capabilities Approach has been applied to address inequalities in Britain through thedevelopment of a ‘capabilities domains framework’ (Burchardt and Vizard 2011). This analyticalmechanism enables capabilities research to evaluate the attainment (or otherwise) by particularpopulation groups of thresholds that indicate good outcomes across multidimensional domainssuch as health, participation and standard of living. Rose (2019) has advocated for thecapabilities domains framework as an objective for a transformed mental health system.

The Capabilities Approach emphasises that groups facing oppression must themselves beactively involved in judging what substantive and valued capabilities are. One group cannotbe liberated by another and ‘“choosing” itself can be seen as a valuable functioning’ (Sen1999: 76). This participation ethic reflects the principles of both the disability and mental


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health user movements. However, in social research using capabilities, people with mentaldistress have not yet significantly participated in determining salient domains or thresholds,despite the fact that

the Capabilities Approach offers a conceptual framework which service users, sur-vivors and allies need to mount a serious challenge to the dominance of the medicalmodel … [I]t supplies what is usually missing in even expanded medical models(like the biopsychosocial model) – a profound understanding of structural constraintsand enablements as they relate to individual agency.

(Wallcraft and Hopper 2015: 84)

While the Capabilities Approach acknowledges that structured powers may oppress or enableand that in theory these are open to analysis, in practice the framework is constrained by lack ofsociological theory to evaluate the impact of underlying structural forces on social outcomes(Sayer 2012). Blended with sociological analysis, the Capabilities Approach offers a com-plementary framing of the first three ‘waves’ of social research in mental distress, combiningdimensions of the social-structural, the micro-level of agency, and the participatory ethos ofsurvivor-led studies, while maintaining a normative overarching purpose to enhance humanflourishing. A move to test the potential of this analytical combination is through seeking toenhance capabilities analysis using critical realist meta-theory. The following section describeswhat was found in the study using the Capabilities Approach on its own, before going on toexplain how the incorporation of critical realism enhanced this.

Study description and findings

The study had four aims: to understand the relationship between personal, social and structuralfactors affecting lived experiences; to consider the character of social justice experienced byparticipants, and to conceptualise this using concepts from the Capabilities Approach; to take acritical realist approach to understanding how the social justice experiences of participants maybe produced and reproduced; and to pursue these aims with regard to both values-basedresearch principles from the survivor-influenced literature and the participation principle fromthe Capabilities Approach. Twenty-two people living in Glasgow with experience of being aninpatient on a psychiatric ward at any time since the implementation of the Mental Health(Care and Treatment) (Scotland) Act 2003 were interviewed. Sixteen of these were alsointerviewed a second time.

In the first interview, people discussed what they had done in the past, what they did now,and what they wanted to do in the future. People talked about ordinary things like havingrelationships, caring for loved ones, using the internet, working and volunteering, watchingand playing sport, going out, and going on holiday. This shows that people with mentaldistress have a wider hinterland of interests, wishes and concerns than mental health alone.These interviews brought a participatory dimension to devising an original capabilitiesdomains framework (Figure 14.1) applicable to people with mental distress. This was used toframe the second interview in which participants considered the domains that constitute a‘thriving’ life, and whether they had personally achieved all these domains in their lives. Allthe participants had experienced one or many domain thresholds being breached. This con-firms that there were no persons who had always experienced good social outcomes. This isan original way of framing the systematic oppressions experienced by people with mentaldistress (Brunner 2017).


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The findings of the capabilities dimension of the study are schematised in the flowchartbelow (Figure 14.2). Each stage demonstrates how Capabilities Approach concepts informedthe analysis, indicating how different dimensions of experience tended to result in poor socialoutcomes for people. Using capabilities, the analysis was able to include the sometimes terri-fying, self-destructive and occasionally enlightening subjective experience of mental distressitself; mixed experiences of the psychiatric system; and the generally oppressive impact of thesocial world beyond the mental health system. A major finding was that the psychiatric systemdoes not improve – indeed can worsen – outcomes experienced by people with mental distress,through unreliable diagnosis, the unpredictable effects of medications, and the experience offear on hospital wards. People were more likely to enhance their capabilities after a stay in apsychiatric hospital if they had pre-existing strong capabilities. However, most people were‘trapped’, with their agency constrained, and were living without domains being fulfilled.

The findings were compatible with, and reframe what we know about, the experiencesand outcomes of people with mental distress from the first three ‘waves’ of social research.The findings reinforce the known repressive tendencies within the psychiatric system, thelack of reliability of diagnosis and medication, and oppressive tendencies in society – mea-sured through peoples’ experiences of attaining functionings and capabilities across alldomains of life. On top of this, the Capabilities Approach framework was also able toencompass lived experience expressed in the study that mental distress can be a terrifying andself-destructive subjective experience, and that people sometimes experienced the psychiatricsystem as valuable, diagnosis as helpful, and society as supportive: contradictory findings

Figure 14.1 The ingredients for a thriving life that a person values and would choose


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which can challenge survivor perspectives, social constructivism and structuralism. Thisauthentic ‘tacking’ to the complexities of lived experience both inside and outside mental dis-tress (Davidson 2003) shows not only that the Capabilities Approach can be operationalised inthis context, but also that the findings complement existing ‘waves’ of understanding theexperiences of people with mental distress, incorporating diversity of lived experiences whileoffering a new lens to interpret how poor social outcomes for this group tend to unfold.

Critical realism reveals how the Capabilities Approach is constrained at the level

of explanation

However, the study also found weaknesses in capabilities and causal explanation. While acapabilities analysis enabled interpretation to show how tendencies to oppression happen, it wasweaker on why they happen, as if social hierarchies and ‘established patterns of behaviour’ (Sen2010: 255) simply exist. This constrains its potential for explanatory power, but also the

Figure 14.2 Study of mental distress using the Capabilities Approach


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potential for actions that result from the analysis. The underpinning mechanisms driving injusticerequire inclusion in the analysis to both explain and effectively act on unjust outcomes.

Sayer (2012: 583) addresses this: ‘it is not difficult to combine CA with an understanding ofpower, class and other axes of domination in ways that support radical conclusions whichmany of the existing policymakers and advisors who favour CA would find alarming’.Critical realist meta-theory is one such framework. Figure 14.3 below identifies ways inwhich the Capabilities Approach and critical realism are strongly compatible, as well as someareas in which critical realism provides conceptual amplifications for capabilities. While notexhaustive, the table confirms the radical promise suggested by Sayer (ibid.).

Both frameworks encompass a regard for human agency, and are normative in purpose.Each takes a non-deterministic, emergent view of the world and social practices, and eachmakes how humans actually live the foundation of their evaluative judgment. In line withthis normativity, neither accepts pure relativism. Both frameworks are non-deterministicabout research methods. However, differences emerge at the level of their understanding of

Figure 14.3 Compatibility of Capabilities Approach and critical realism


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the social-structural. Capabilities retains a mid-range focus of understanding of the world andsocial practices; critical realism demands that the analysis includes the roles of dominant normsand social-economic structures, causal explanation beyond the empirical. Is it the underlyingcausal mechanisms, which shape practices, expectations, norms and outcomes, that really matterin remediating social injustices for people with mental distress? Capabilities can only answer thisusing meta-theory. The concept of remediability – putting right injustices – is core to thenormative purpose of capabilities (Sen 2010). However, without meta-theory, this risks con-straining understanding, and therefore limiting action on the underpinning mechanisms thatdrive social injustice. These underpinning elements will be familiar to social researchers ofmental distress: ingrained cultural beliefs about human behaviours – who and what is ‘normal’;who and what is seen as rational; who is seen as valuable; who has the power to define anddetermine ‘illness’ or ‘disorder’ and how it should be treated? These types of historically shapedunderpinning mechanism require inclusion in the analysis to both explain and effectively act onpoor social outcomes for people with mental distress. Critical realism facilitates this expansion,and in doing so protects the Capabilities Approach from analytical reductionism and over-simplification, thus addressing Sayer’s (2012) concerns.

The ability of critical realism to expand the depth and breadth of analysis can similarly benefitresearch conducted through the lens of the three prior ‘waves’ of social research on mentaldistress, again protecting against the persistent risk of reductionism and oversimplification,while maintaining the normative goal of emancipation. However, early applications havebeen at the level of critique of the reductionism of biomedical approaches (e.g. Pilgrim2015). The contemporary challenge is how to apply critical realism to empirical studies thatare conducted from a social perspective, which the current example seeks to do.

Conclusion: next steps for critical realism, mental distressand disability studies

Capabilities-founded analysis of mental distress is compatible with long-standing waves ofsocial research exploring mental distress. Critical realism fills analytical gaps for capabilities,enhancing depth and breadth in its critical and explanatory work. Combining critical realismand capabilities has been shown here to order thinking not only about how, but also aboutwhy individuals with mental distress might or might not experience poor social outcomes,thus enabling analysis to both reflect the diversity of lived experience while also revealinghow tendencies of injustice are structurally shaped.

Critical realism is an encompassing framework, operating at the level of meta-theory. So, itis able to compatibly expand the depth and breadth of analysis conducted through the lens ofthe three prior ‘waves’ of social research on mental distress, as well as offer trenchant critiqueon the reductionism of biomedical approaches (e.g. Pilgrim 2015). Critical realism thereforeholds underexploited potential for expanding the analytical breadth and depth of empiricalresearch seeking the emancipation of people with mental distress. Fostering a critical realistculture, or engaging a critical realist sensibility, reinforces the ability of all waves of socialresearch exploring mental distress to maintain a scientific ‘openness’. It enables our researchto incorporate tendencies to social reproduction that shape the general pattern of injustices,but without ‘boxing in’ tautologically, so enabling regard to diversity of experiences andoutcomes. It allows us to analytically incorporate subjective mental distress as a materialfeature that may influence outcomes negatively or positively, as much as it enables us tofederate the impacts of dominant social norms and the powers of the psychiatric system, andhow these actually play out.


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So, engaging with critical realist meta-theory opens up space for analytical frameworks appliedto mental health, including survivor epistemologies, structuralism, symbolic interactionism, theCapabilities Approach, and even refounded biopsychosocial understandings (Pilgrim 2015: 144–146), to fully express what they empirically find, and to reflexively interrogate the basis of thosefindings, while upholding emancipatory normative stances. Furthermore, critical realism hasthe potential to both enhance and unify research on mental distress because it is able toencompass contested tensions within the analysis of lived experiences of mental distress thatremain unresolved by existing epistemological claims. These include issues such as theoppressive versus supportive roles of the psychiatric system and related laws; liberating versusstigmatising impacts of a diagnosis or label; relieving versus distressing dimensions of psy-chiatric medication and its iatrogenic effects; and diverse social justice experiences related toexperiencing mental distress in specific social, economic and cultural contexts. The deeperexplanation enabled by critical realism allows empirical contradiction, or ‘inconvenientcomplications’ (Jones and Kelly 2015), to be embraced and analysed through.

Critical realism can also add to critique of the currently predominant ‘recovery’ agenda byrevealing the dimensions overlooked by this model. For example, it forces us to look beyond‘stigma’ as the prime agent in oppression of people with mental distress, and to get closer to‘the causes of the causes’ (Marmot and Wilkinson 1999).

The compatibility between disability studies and social perspectives on mental distress haslong been debated (e.g. Plumb 1993, 2015) and sought (e.g. Beresford 2012, 2015). Criticalrealism offers the potential for a unified critique across the two fields of study. It enables us toask biomedical research on mental health and medically driven disability research harderquestions about the reflexivity that they offer in relation to their own foundational concepts.It empowers us to mutually pinpoint their epistemic and ontological fallacies. It allows us tojointly highlight any avoidance of dimensions beyond the empirical in medically foundedresearch across both disability and mental health. In terms of primary social research, there isas yet underused potential to bring the intertwining lived experiences of the two groupstogether in empirical studies using normative analytical frameworks, and to lift the analysis toa critical realist level. These routes suggest how the proposition of this chapter – that criticalrealism offers potential unity across the two fields of study – may be further advanced.

Acknowledgements

Thanks to Nick Watson and Nicola Burns for their valuable comments on drafts of this chapterand to participants in a social theory paper session at the British Sociological Association AnnualConference held in 2017. A Scottish Graduate School of Social Science ESRC PostgraduateStudentship at University of Glasgow (2011–2014) funded the study on which this chapteris based.

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15

IT’S ABOUT TIME!

Understanding the experience ofspeech impairment

Kevin Paterson

The opportunity to communicate – impart to another person or persons opinions, ideas,thoughts, feelings and emotions – plays a central part in social life and the defining of a ‘socialbeing’ (Jordan and Kaiser 1996; Rae 1993). Although many disabled people are excluded fromsuch opportunities to communicate and find it difficult to have their voices heard and under-stood, disability studies has little to say about this exclusion and issues of communication remaintheoretically underdeveloped from a social model perspective. Drawing upon the proposition ofa sociology of impairment (see Paterson and Hughes 1999) and the idea of ‘temporal barriers’ tocommunication (see Parr et al. 2003b), this chapter seeks to develop an understanding of‘communication disablement’ from the standpoint of a person with speech impairment.

The phenomenology of Maurice Merleau-Ponty (1962) is crucial to a sociology ofimpairment. He grounded perception in the experienced and experiencing body. The worldas perceived through the body is the ground level of all knowledge, for it is through thebody that people have access to the world. Our perception of everyday reality depends upona ‘lived body’ (Williams and Bendelow 1998), that is, a body that simultaneously experiencesand creates the world. Crossley’s (1995) suggestion that the physical, cultural and social worldis carnally formed and informed by bodily activity facilitates an understanding of the everydayembodied reality of being disabled. The body acts and by its actions it builds a world ofintersubjective and intercorporeal relations. In the context of these relations, however, it isacted upon. Disabled people’s everyday embodied experience of the lifeworld is one of ‘dys-appearance’ (Leder 1990). Unlike the non-impaired body, which is customarily ‘unaware’ ofitself until it is confronted by pain or discomfort, the impaired body can also be stunned intoits own recognition by the disablism that permeates everyday life. This experience isproduced because social space is fashioned for and reflects the needs of non-impaired carnalityand the impaired body is not recognised or valued in social space. The objectification marked by‘dys-appearance’ is, in itself, a manifest form of oppression which is ‘felt’ in a variety of ways bythe disabled people who experience it (Paterson and Hughes 1999; see also Imrie 2000, 2004;Edwards and Imrie 2003).

Disability studies is dominated by a topography/geography of oppression. Its structuralaccount of disability fails to interrogate the everyday world. The social model tells us little ornothing of the ways in which disability is produced in the lifeworld, how oppression and

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discrimination become embodied and become ‘felt’. Oppression is not simply produced bystructural barriers – it is a question of intercorporeal norms and conventions. It is about theextent to which ‘competence’ is negotiated in the everyday world and how this negotiationhinges on carnal factors. It is about how social encounters can go astray within the taken-for-granted (spatio) temporal relations and how these relations can produce the experienceof ‘dys-appearance’.

In contemporary society, where our lives are governed by the maxim ‘time is money’,time is conceived as a precious resource – it is not passed but spent. However, we rarelyconsider how this reckoning of time impacts on our everyday lived experience. Adam (1995)describes time as the ‘backcloth’ to our lives, a taken for granted reckoning that she wants tomake visible. This chapter will consider how this essentially ‘hidden’ temporal mediation ofthe everyday world impacts on disabled people (see Parr et al. 2003b; Corker 1998; French1992). I will argue that, with respect to the taken for granted and negotiated choreography ofeveryday life, temporal norms disadvantage people with speech impairment. The ableistnature of temporal norms means that people with speech impairment find it nearlyimpossible to acquire and sustain the physical and cultural capital necessary to participate ineveryday social encounters. The choreography of the (spatio) temporal domains tends,therefore, to reinforce the exclusion and estrangement of people with speech impairment.

The concept of ‘choreography’ denotes an intersection between embodied action, spaceand time. ‘Choreography’ is the sequence of scripted bodily movements set within a specifictempo and space. It emphasises the importance of (socially coded) bodily actions and signs inmediating and distorting everyday interactions and encounters (Crossley 1997). I want todemonstrate that compliance with the notations of intercorporeal encounters has exchangevalue: it accords communicative capital. The choreography of communication has produceda context for embodied action in which people with speech impairment are framed as being‘out of time’ and ‘out of step’ and so credited with little or no communicative capital.

Time and the social model of disability: a critique

Although the spatial disciplines have, by and large, ignored the issue of disability untilrecently (Gleeson 1999; Imrie and Edwards 2007), the production of social space is thecentral concern of disability studies (Kitchin 1998; Freund 2001). Within the social model,disability is the relationship between the impaired body and the organisation of social space.It is concerned with spotlighting ‘restrictions’, ‘barriers’ and ‘obstructions’ that produce dis-ability. Although this analysis does not deny the importance of attitudinal barriers, the powerof language or everyday embodied experience, such issues are viewed as secondary andmarginal (Corker and French 1999) in comparison to the concrete terrain of social structureand organisation. This reliance on a structural account of disability does not adequatelyexplain the oppressive nature of intercorporeal and intersubjective relations (Paterson andHughes 1999). It is also important to identify the ways in which estrangement and margin-alisation are produced by the choreography of everyday life.

Embodied norms of communication are oppressive to people with speech impairment(Robillard 1994; Lenney and Sercombe 2002) as they are exclusively informed by and reflectthe needs of non-impaired bodies. This oppression is ‘felt’ as bodily ‘dys-appearance’. Bothtime and proprioception are central to communication, indeed central to success, or for thatmatter to failure, in the everyday world. The social model offers an understanding of disabledpeople’s experience of oppression, most explicitly in terms of society’s production of structuralbarriers and access to social, cultural and physical space. This has largely been the outcome of

Understanding the experience of speech impairment

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the collapse of the meaning of impairment into a ‘homogeneous notion’ in which mobility isthe key term and in which mobility has been regarded as a problem of getting into and gettingaround public and domestic spaces. For example, when issues of ‘communication disablement’are touched upon they are framed as being the result of structural barriers, and it is argued thatsuch barriers to social participation can be removed by the ‘proper’ provision of augmentativeand alternative communication technology and human facilitators. There are two problemshere: there is a temporal dimension to the oppression of people with mobility impairmentswhich is largely ignored in the literature and, second – and more central to the concerns of thischapter – there are other forms of oppression that cannot be reduced to spatial access. Peoplewith speech impairment, for example, are regularly excluded from everyday social encountersby the temporal conventions that structure communication. While the social model allows thedisabling contours of the spatial environment to be mapped and defined, it is theoreticallyunderdeveloped with respect to patterns of oppression that are constituted predominantly bytemporal factors.

The development of a politics of space has been and remains a central vehicle for theemancipation of disabled people. However, just as the spatial disciplines appear to have failedto recognise this point, so disability studies has missed the ‘temporal turn’ within the spatialdisciplines and wider social theory (Adam 1995). Attention has been turned to the inter-woven nature of space and time and their social determinants. Disability studies might somove in the direction of a social analysis of time (Adam 1995) and map out the place oftemporality in the relations of oppression which mark the embodied experience of disability.Just as concern is given to revealing ‘restrictions’, ‘barriers’ and ‘obstructions’ in the spatialenvironment that disable people with impairments, regard must also be given to exposingpatterns of exclusion that are constituted predominantly by the ‘tempo’, ‘pace’ and ‘rhythm’

of everyday life (Parr et al. 2003b).Parr et al. (2003b) have pointed out that social model writers have never completely ignored

the importance of the reckoning of time in the production of disability. For example, Gleeson(1999), Oliver (1990) and Finkelstein (1980) highlight how the change in tempo and pace ofsocial and economic life enacted by the Industrial Revolution is a significant factor in theexclusion of people with impairments. The pace of factory-based work and the discipline ofproduction norms were a stark contrast to the slower and more self-determined methods ofagrarian and cottage-based work into which people with impairments had been integrated(Ryan and Thomas 1980). The feudal understanding of temporality was conceived through theturning of the seasons, the passage of the day and nature’s life cycles rather than mechanicalclock time. Within this temporal framework the reckoning of labour time was task-orientated:work lasted as long as the job required (Thompson 1974). The body was itself a powerfulsource of temporality, mediating the extent and duration of tasks undertaken. Gleeson assertsthat this ‘self-determination of tasks meant that individuals could match work rhythms withtheir corporeal abilities’ (1999: 85). Moreover, ‘Feudal temporality was a significant contributorto “somatic flexibility” in the peasant labour process’ (ibid.).

As industrialisation developed, time and money became virtually synonymous (Weber1987). The new process of production demanded a form of somatic flexibility that wasdetermined by the pace and rhythm of the mechanised factory floor rather than the indivi-dual worker. Individuals with all types of impairments were pushed out of the labour marketand into the workhouse and the asylum (Oliver 1990; Finkelstein 1980).

Adam (1995) has criticised this dualistic analysis which associates ‘non-Western’ or pre-industrial societies with cyclical, task-orientated time and ‘Western’ or industrialised societieswith linear, clock time. Customarily, social science has tended to keep apart the different


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conceptions of time and grant supremacy to rationalised clock time. What is important forAdam is to question that which is taken for granted: the hegemony of clock/commodifiedtime.

However, there is no doubt that traditional dualistic analyses denote changes in the orga-nisation of time resulting from industrialisation. There is also no doubt that the social modelis helpful with respect to the ways in which time is determined by epochal changes. Itsstructural approach illustrates the way temporal changes between modes of productionimpact on the exclusion of people with impairments. However, just as the social model ofdisability is not the best vehicle for discussing the embodied nature of everyday spatial rela-tions, so too it can be argued that it ignores the everyday embodied reality of commodifiedtime. This is where a phenomenological sociology of impairment could fill the gap.

One of the consequences of the hegemony of clock time/commodified time is what hasbeen called ‘the valorization of speed’ (Adam 1995). One can argue that the reckoning ofWestern time is soma-centric and the soma that underpins the reckoning is non-impaired. Inother words, the organisation and orchestration of time is formed and informed by the carnalneeds of non-disabled people.

In (post)industrialised societies efficiency, profitability and competitiveness all have a posi-tive value. Processes that take a long time, procedures and actions the duration of whichcannot be accurately estimated and calculated, are cast out as ‘waste’ and ‘delay’. To betypified as ‘slow’ in the performance of (most) tasks is to be seen as ‘deficient’ and ‘incom-petent’. Moreover, the terms ‘slow’ and ‘a bit slow’ have been used to ascribe an impairment.Such valorisation of speed tells the tale of rationalisation of time: time as calculable, asquantitative measurement, work as paid employment and the money-efficiency-profit linkare irrevocably interwoven into a culture that lives off the energy of time consumed as quickas reason and resources will allow (Adam 1995).

However, timescapes based on the desire for speed carry their toll. Not only does our‘need for speed’ place a heavy burden on the planet, it also mitigates against equality betweenpeoples, both globally and locally. If individuals cannot comply with the reckoning of time inrelation to money, efficiency, competition and profit, then they face discrimination andexclusion. As Adam argues, ‘the link between speed, economics and clock time operatesagainst the principle of equal opportunity, whether this be in relation to different sexes,occupational groups, cultures or categories of people’ (1995: 101). Disabled people palpablyfind themselves as such a category of people (French 1992; Wendell 1996; Parr et al. 2003b).

Commodified time not only restricts access to and within the workplace (French 1992), italso encroaches into the everyday world, structuring intercorporeal and intersubjective rela-tions and producing the ‘dys-appearance’ experienced by people with speech impairment.‘Formalised’ temporal rules marginalise and estrange a variety of social groups when nego-tiating health and welfare services. Bureaucratic time pressures can limit the possibilities forthe appropriate flow and exchange of information for people whose first language is notEnglish for example, thus hampering the services received (Warin et al. 2000). People withspeech impairment are obviously disadvantaged by such time pressures. While family, friendsand partners may ‘have the time’ to communicate, this is not often the case for individualsworking in the health and social care professions (see Robillard 1994; Higginbotham andWilkins 1999; Hemsley et al. 2001). People who face communication barriers are very sen-sitive to non-disabled people’s levels of investment in interactions with them (Parr et al.2003b) and a lack of investment is ‘felt’ as ‘dys-appearance’.

From a phenomenological standpoint, people with speech impairment are not onlypoliced by the ‘formal’ organisation of time, they are also policed by ‘informal’ everyday


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temporal rules into unsatisfactory interactions (Parr et al. 2003b). Everyday ‘codes of conduct’have schedules and rhythms that are required to be met. Speedy communication is valuedsince time should not be wasted. People with speech impairment are marginalised becausethey are framed as a threat to the fast and ‘easy’ flow of communication. Durations of parti-cipation are exclusively informed by and reflect the carnal needs of non-disabled people.People with speech impairment are pre-disposed to appear wanting in the face of thesenorms of communication. If a person is viewed as ‘undisciplined’ or ‘lax’ in respect to thesetemporal conventions then they are judged ‘inarticulate’ and their voice is unheard. A personwith speech impairment ‘dys-appears’ because there is ‘no slack’ when negotiating the choreo-graphy of everyday life. One must keep ‘in time’ and ‘in step’ with the tempo of communicationbecause slowness is the embodiment of failure and ‘deficiency’. Disruptions (and distortions) arisein communicative encounters between people with and without speech impairment because thechoreography of everyday life demands an exclusionary form of bodily performance and ‘style’which does not reflect the carnal information of the former.

It is often suggested that disruptions and distortions to communication are created throughan interlocutor’s apprehension and anxiety about speech impairment and their fear of not beingable to interpret what a person with speech impairment is saying (Robillard 1994; Lenney andSercombe 2002). The social model of disability emphasises that negative attitudes towardsdisabled people are embedded in and are a product of the structures and social relations ofcontemporary society. However, one must also seek to understand how these attitudes areplayed out in the everyday world, how discrimination and prejudice are ‘felt’ and becomeembodied in everyday encounters.

Often when a person with speech impairment encounters an unfamiliar interlocutor thelatter decides they have ‘no time’ for the former. The assumption is that the person withspeech impairment is and will be a ‘waste of time’ and therefore the stranger frequently looksfor some competent other to address. This judgement is made and these taken for grantedassumptions are accepted because the scripts from which non-disabled people bestow ‘com-petence’ are devoid of impaired carnality. When the person with speech impairment speaks,the stranger’s assumptions are confirmed because their ears are already closed. Their limitedtime is elapsing and the disabled person has become a barrier to the efficient spending of it.The stranger does not want to devote ‘more time’ to listening to what is being said or to askfor misheard words to be repeated. The person with speech impairment disappears for thestranger because they are a ‘waste of time’ and the person with speech impairment ‘dys-appears’ (for themselves) because they are in an immanent moment of obvious and palpableexclusion in which their social worth has been denied.

It is not uncommon for people with speech impairment when out with non-disabled com-panions to be approached by strangers who ask if they are siblings or related in some other way.This again reflects a denial of disabled people’s socio-temporal corporeal worth. The stranger seesand hears the interaction and seeks to interpret why a non-disabled person would spend theirinvaluable time talking to a person with speech impairment. The stranger seeks a way to perceivethis experience – which undermines the ‘normal’ notion of social interaction – and stabilise itsunfamiliarity by drawing on scripts which place the disabled person firmly on the sidelines of‘social competence’. There seems to be no return for the non-disabled companion’s temporalinvestment and the assumption is made that they must be acting out of ‘family duty’. Thestranger sometimes expresses ‘admiration’ for the non-disabled companion when they learn thatthis is not the case. The person with speech impairment disappears (for the stranger) because theyare guesting as a player in the game of social interaction and ‘dys-appears’ (for themselves)because they are ‘reminded’ that their corporeal status casts them as a fraudulent ‘social being’.


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One can argue that non-disabled people’s anxiety and fear about speech impairment mightnot be a problem in itself if they were prepared to take the time to listen and to exercise the‘patience’ with respect to interpretation. However, non-disabled people are products of theconventions of communication, the intercorporeal relations which reflect their carnal pecu-liarities. Their apprehension and embarrassment arise in the context of the disruption to a setof verbal utterances and non-verbal bodily cues and gestures which are scripted andsequenced by hegemonic non-impaired carnality. These embodied notations and protocolsare central to participation in the lifeworld, but which are also pre-disposed to the exclusionof those who do not dance the same dance. A person with speech impairment, viewed asbeing ‘out of time’ and ‘out of step’ and therefore anticipated as a ‘distortion’, is a barrier tosuccessful communication and is confronted as such. This temporal estrangement is a palpableconstituent in bodily ‘dys-appearance’.

Interlocutors sometimes attempt to anticipate what people with speech impairment aresaying when they plainly do not know. This is a common ‘coping mechanism’ that manypeople use in unfamiliar interactions, such as a conversation where the individuals are notfluent in the other’s first language. It is a clear example of the powerful mediating influenceof temporal relations in communicative encounters: interpretation must be instantaneous ornot at all. Such encounters go astray and the person with speech impairment ‘dys-appears’not because his or her interlocutor misunderstands what is being said but because the inter-locutor is policed by temporal norms of communication into declining to take the time toascertain what is being said.

People with speech impairment do not expect their interlocutors to always understand them.It takes time for people to ‘acquaint’ themselves with non-conformist ‘styles’ of communicationand familiarity eases communication. However, if the choreography of communication wascarnally re-informed to reflect the corporeal status of people with speech impairment, socialinteraction could afford the time and the room to iron out any misunderstandings.

Speech impairment and communicative capital

Speech and language therapy and the social model are both concerned (in opposing ways) withassisting people with speech impairment to ‘get into’ social interaction. Their goals and philoso-phies about facilitating ‘competent’ communication may be different in the extreme. However,both seek to ‘tool up’ people with speech impairment with the resources – either technical orbodily – to allow them to successfully negotiate the choreography of everyday life. Neitherspeech and language therapy nor the social model seek to confront the everyday, mundane‘meshes of microauthority’ which estrange and exclude disabled people. The goal of an eman-cipatory politics of disability is not just about disabled people ‘getting in’ and ‘getting around’social space, it is also about creating a ‘sense of belonging’ (see Marks 2000). Consider the accessneeds of disabled people. It is not only that their access needs should be met, it is also that theirneeds should be viewed as legitimate (ibid.). This not only relates to the access requirements ofdisabled people being ‘tacked onto’ the spatial environment as an after-thought, it also relates tothe extent to which disabled people are recognised as ‘social beings’ through having the time andthe room to participate fully in the everyday world. Adopting a phenomenological sociology ofimpairment, one does not seek to ‘tool up’ disabled people to allow them to ‘keep pace’ witheveryday life, or to implore non-disabled people to ‘grant’ the time and the room to allow thesocial participation of disabled people; one seeks to fuel a struggle to carnally re-inform the(spatio) temporal rules which structure participation so that disabled people are valued, includedand legitimised in the choreography of everyday life, and so do not ‘dys-appear’.


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As I stated earlier, issues of communication have been overlooked within disability studies.It is true that a social model approach within speech and language therapy is beginning totake shape, with important work focusing on aphasia (see Jordan and Kaiser 1996; Jordan andBryan 2001; Parr et al. 2003a; Byng and Duchan 2005). Despite these welcome develop-ments, a social model approach to ‘communication disablement’ remains limited. It is not myintention to argue that the social model of disability has not offered any notion of liberationfor people who face communication barriers – far from it. Nor do I wish to disavow theimportance of speech and language therapy. My intention is to seek an approach thatunderstands that communication barriers are constituted by intercorporeal and intersubjectiverelations as well as by structural relations.

Claims for better communication aids and resources are vital and consistent with thematerialist emphasis of the social model but do not challenge the carnally informed notationsand protocols of communication. Such claims embrace technical solutions but do notchallenge the hegemony of non-disabled norms in the everyday world. Technological fixesnot only leave ableist norms of communication unchallenged, they reinforce them. Suchfixes also mean that non-disabled people do not have to and are not expected to makeadjustments to how they use time. Oliver (1990) has pointed out that technology itself willnot necessarily produce or equally deliver benefits. New technology can have a liberatingeffect on the lives of disabled people. However, disabled people may be further excluded ifthey are not enabled to take full advantage of new technological opportunities because ofeducational, financial, attitudinal and administrative barriers (Cornes 1991; Thornton 1993;Hodge 2007). Moreover, new technology offers individual solutions that are not going to beuniversally available because of resource allocation and supply. The social model promotescollective solutions and views the benefits of new technology as existing in its potential torehabilitate the disabling environment (Roulstone 1998). Disability studies is right to be waryof technological determinist ideas, to not fall for the technology-equality falsehood thatsuggests that technology is the panacea to every disabling situation (French 1992; Corker1998). However, it has not formulated this position with regard to issues of communication.

New technology can facilitate access to social encounters but one must highlight the fact thateveryday intercorporeal relations exclude people with speech impairment. Communication aidsfacilitate (or are supposed to facilitate) access to social encounters. However, the choreo-graphy of social encounters does not always accommodate such facilitation. Thus, peoplewith speech impairment are de-legitimised as ‘social beings’, which in turn produces theirbodily ‘dys-appearance’. As Albert Robillard (1994) points out, alphabet boards are onlyenabling if an individual’s interlocutors are ready to step outside the dominant tempo, paceand rhythm of communicative encounters and dance to his or her dance. Furthermore, theuse of assistive technology involves the inevitable technical glitch which creates furthertemporal estrangement (see Corker 1998; Hodge 2007).

The social model structural account of disability tells us little or nothing of the ways inwhich disability is produced in the everyday world, nor about the ways in which this processis limited to reactions to impairment or the ‘embodied experiences’ (of impaired people) thatare associated with it. ‘Communication disablement’ is not a problem of ‘botching’ a carnalperformance (giving the wrong verbal or non-verbal cue). It is matter of being estranged bythe dominant choreography of everyday life. The body-subject disappears in the everydayinteractions between non-disabled people and people with speech impairment because sub-jectivity and speech are so closely articulated and because the desire for successful interactionsis a moving force in the choreography of everyday life. People with speech impairmentbecome pure body-objects, in the negotiation of everyday encounters, because they are


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perceived as being in deficit, culturally. They do not belong to the same (communicative)culture. Exclusion takes the form of ‘gestures’ and movements: the gestural rejection of thespeech impaired body by the non-disabled body is a commonplace method of endingencounters. The ideology of tragedy plays itself out in gestures of rejection or appeals toothers to mediate or interpret. In many cases, the only way to deal with the disabled subjectis to deny their subjectivity by way of ‘unusual’ civil inattention or over-attention (Robillard1994; Lenney and Sercombe 2002).

Drawing on the work of Pierre Bourdieu (1984), one can argue that physical and culturalcapital is accorded to bodies that perform to the embodied norms of communication and iswithheld from those that do not. Bourdieu views the body as an unfinished project whichdevelops in association with a range of social forces and is central to the maintenance of socialinequalities. The body is conceptualised as a form of physical capital (Shilling 1993). Accordingto Bourdieu (1984), bodies bear the imprint of social class and status through the interrelationbetween an individual’s social location (the material conditions that shape everyday life and thedevelopment of the body), habitus (the formation of habitual class-based skills, such as bodilyperformance and presentation) and taste (the processes whereby individuals appropriate, asvoluntary choices and preferences, lifestyles that are shaped by material constraints). Bodiesdevelop through the interrelation of social location, habitus and taste, which serves to shape as amarker of distinction. This interrelation locates the body in what he terms as a ‘body schema’(Bourdieu 1984: 218), a hierarchical network organised according to social status.

Bourdieu’s analysis can be applied to other social identities to take account of the ways socialdifferences are ‘naturalised’ and viewed as pre-social (Shilling 1993; Hancock and Tyler 2000).This naturalisation of the body is important to Bourdieu’s theory of social reproduction as heargues that there are substantial inequalities in the symbolic value accorded to particular bodilyforms. Crucial to the value of different forms of physical capital and to their veneration is theability of dominant groups to specify their bodily forms and presentation as proper, worthy ofreward and as ‘the embodiment of class’ (Shilling 1993: 140). It is not only social class but othersocial identities – such as gender, ‘race’, sexuality, age and disability – that shape such embodiedhierarchies, as the body acts as an important bearer of value in contemporary culture (Hancockand Tyler 2000). Bodily attributes and differences such as skin colour, anatomy and perfor-mance acquire and symbolise specific value and such differences are translated into social dif-ferences which mediate one’s life chances (Crossley 2001; see also Young 1990).

Bourdieu recognises that acts of labour are needed to turn bodies into social entities and thatthis ‘body work’ influences how people develop and hold their body shape, and learn how topresent their bodies through expressions of speech, demeanour, gesture and dress (bodily per-formance and aesthetics). Bourdieu argues that the bodily forms produced by the workingclasses constitute a form of physical capital that has less exchange value than that developed bythe dominant classes. By less exchange value Bourdieu means that particular forms of physicalcapital have value not only within their own social spheres, but also across social spheres.Bourdieu applies this to inequalities in the education system. He argues that children fromworking-class families are ‘low attainers’ because working-class speech and bodily demeanour –valued within their socio-familial sphere – are interpreted less favourably by school teachers andthe school system. Conversely, middle-class children are ‘high attainers’ because middle-classspeech and demeanour have little or no differential value between their socio-familial sphereand school system. Schooling validates a middle-class ‘style of being’.

Applying Bourdieu to disability, one can take account of the ways in which socio-structuralinequalities between disabled and non-disabled bodies are ‘naturalised’ and viewed as pre-social.Physical and cultural capital is accorded to the bodies that are constructed as ‘normal’ through


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the modalities of function and aesthetics. The bodily forms of disabled people are credited withless exchange value than non-disabled bodies, and this reproduces the view that their ‘inabil-ities’ and ‘deficiencies’ are natural rather than socially produced. This distribution of physicaland cultural capital is symbolic of the distinction between ‘normal’ and ‘abnormal’ corporealstatus (see Allen 2004; Edwards and Imrie 2003).

One could argue that the remit of speech and language therapy is to increase the physicaland cultural capital of people with speech impairments. Although the social model of dis-ability has gained influence within speech and language therapy, communication difficultiesare predominately framed as an individual or family problem rather than a social problem(Jordan and Kaiser 1996). Therapy is centred on the ‘improvement’ of speech and languagefunction and competence and encourages individuals in deficit to become ‘practised’ in theembodied protocols of communication. The individual is encouraged to work towards a‘legitimate’ bodily performance and style of communication, which is regarded as a basicbuilding block of social participation. The focus is on the correct presentation, rather thanrecognising the legitimacy of other ‘styles’ of communication, or on identifying the problemas one that is related to the disablist choreography of everyday social encounters.

George Bernard Shaw’s Pygmalion is the archetypical representation of the aims of speechand language therapy. The proper way of speaking is associated with the received pro-nunciation, diction and grammatical idiosyncrasies of the ruling class and those who do notlive up to those standards may, if they are lucky enough to have an appropriate benefactor,make some progress towards the manner of speech that is recognised as appropriate in politecircles. The traditional goal of speech and language therapy is to determine ways in whichthe (carnal) performance of a person with speech impairment might be restored to somethingapproximating the orderliness of ‘proper communication’. The approach or ‘treatment’ seeksto adjust an individual’s performance to facilitate ‘social competence’. Ironically, speech andlanguage therapists advise people with speech impairment to ‘speak slowly’ and ‘take theirtime’ in order for their voices to be heard and their words to be discerned. However, thechoreography of communication is not ‘free style’ and the ‘default settings’ for communicativeencounters do not provide such temporal accommodation.

This therapeutic approach relates to what Bourdieu sees as struggles over the power todevelop, define and appropriate bodily forms that embody most value in society at a parti-cular time. Such struggles over the corporeal are amplified in importance when theyencompass definitions of what is a legitimate body, and the legitimate use of the body incontemporary society (Shilling 1993). These struggles are associated with the production andattainment of physical capital. However, they also extend beyond (mere) resources issues.They relate to the very structure of what Bourdieu terms ‘social fields’ (e.g. education, healthcare and rehabilitation) which make judgements about the merit of certain bodies or bodilypractices. Those who exert power over fields that concern themselves with the corporealinclude ‘moralists and especially the clergy, doctors (especially health professionals), educatorsin the broadest sense’ (Bourdieu 1978, in Shilling 1993: 145). These groups of ‘body experts’play a part in educating bodies and labelling as legitimate or deviant particular ways ofmanaging or experiencing our bodies. This mediates the way we recognise our own bodilypractices and performances and the bodily practices and performances of others, as ‘right’ andfitting or in need of governance and improvement (Shilling 1993).

Definitions of the legitimate body and legitimate bodily performances are clearly evidentin the field of therapy and rehabilitation. Speech and language therapy aims to invest theimpaired body with physical and cultural capital through its ‘prescription’ of the legitimateperformance of speech, timing and movement. The disabled person would then be able to


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comply with the protocols of ‘competent communication’ and thus be able to participate insocial encounters. The assimilationist values embedded in this approach (which prioritises theperformance of non-disabled people rather than disabled people) have been clearly delineatedin social model critiques of rehabilitation yet these values are themselves carnally informedand arise from the ways in which non-disabled bodies leave their imprint on the world.

One cannot discuss communication and not mention Jürgen Habermas. Crossley (1997)draws on both Bourdieu and Merleau-Ponty in his attempt to bring a sense of embodimentinto Habermas’s theory of communicative action. He claims that attending to the corporeal inthe theory of communication illuminates a key Habermasian concern: ‘systematically distortedcommunication’. Our embodiment is one of the key modes for the introduction of distortionsinto communication. In fact, only embodied discourses are susceptible to distortions (ibid.).This position offers an understanding of the distortions that arise in communicative encountersbetween disabled and non-disabled people.

One of Habermas’ central concerns regarding the systematic distortion of communicationis that the opportunity for open exchange is negated through the influence of socio-structuralfactors such as social class, status and power (Crossley 1997). Crossley’s argument, followingBourdieu (1977, 1984, 1992), is that these factors often intrude into communication throughthe mediation of our embodiment, for example speech, comportment, gesture, demeanour,bodily attitude. Moreover, it is clear that they trigger a corresponding bodily attitude or aMerleau-Pontyian ‘style of being’ (Crossley 1997: 31). For example, Crossley states that amiddle-class accent may elicit deference or arouse animosity in a working-class interlocutor,shaping the way in which they both listen and respond and thereby distorting a socialencounter. Moreover, the (socially coded) embodied signs of gender or ‘race’ may produce arange of prejudicial patterns of behaviour, with similar consequences (see Young 1990).Similarly, the (socially coded) embodied markers of impaired bodies can trigger disablistattitudes and reactions which distort and disrupt social interactions.

Bodily markers will ‘comment’ upon whatever else is being said, either positively or negatively(Crossley 1997). A public school accent and self-assured demeanour may be a considerable assetin some contexts of political debate. However, such a bodily performance is less of an asset whenattempting to extol the virtues of working-class solidarity, appearing less than convincing becausesuch an accent would imply that the speaker is unacquainted with the manual labour that s/helionises. Through these corporeal markers the social status of the speaker infiltrates their com-munication and comments upon it. Social encounters are framed by bodily markers (ibid.) andsuch bodily markers are drawn from white, middle-class, male, non-disabled bodies.

With the aestheticisation of contemporary culture (Featherstone 1992), a person’s appear-ance and embodied action comments upon what it is that they say and thus may detract fromand distort it (Crossley 1997). The aesthetics, sound and comportment of bodies is relevant tohaving one’s voice heard (ibid. 1997, 2001). Bodily markers also frame what is viewed as‘legitimate’ social interaction. For example, sign language is often perceived as aggressive,inappropriate or sexualised bodily performance (Sutherland 1981; Davis 1995; The Observer1998). Here, the timing and proprioception which constitutes this form of social interactionis viewed as the antithesis of physical and cultural capital. The ‘style’ of communication isseen as an ‘affront’ – and literally a threat – to ‘good’ intercorporeal relations. This relates towhat Bourdieu sees as struggles over the power to define what is a legitimate or deviantbody, and what are legitimate bodily practices and performances in contemporary society(Shilling 1993; Edwards and Imrie 2003).

Drawing all these threads together, it is my contention that the (spatio) temporal normsand conventions of the everyday world mean that people with speech impairment find it


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difficult to reveal themselves as ‘social beings’ and ‘articulate bodies’. They are preventedfrom acquiring and sustaining the physical and cultural capital necessary to participate ineveryday social encounters. The choreography of everyday life reinforces the exclusion andestrangement of people with speech impairment.

Compliance with the embodied norms and conventions of communication has exchangevalue: it accords communicative capital. People with speech impairment are estranged andmarginalised by the dominant choreography of communication and hence communicativecapital is bestowed principally on the corporeal status of non-disabled people. It is symbolicof the distinction between the ‘articulate body’ and the ‘inarticulate body’. People withspeech impairment’s ‘style of being’ and ‘style’ of communication are seen to commentnegatively upon what it is that they wish to express and thus detracts from and distorts it.

It is not only that people with speech impairment are prevented from having the time andthe space to talk because of the norms of negotiation that structure the choreography ofcommunication. It is that their embodied action, their proprioception is constituted as temporal‘incompetence’ and casts them out as ‘inarticulate bodies’. When a person with speechimpairment is in public spaces and places, they are reacted to in relation to the institutionaldisablism that structures society. However, they are further excluded and marginalised becausethe notations and protocols of intercorporeal relations prevent the bodily performance of dis-abled people from being credited with physical or cultural capital. Every time they are out inthe street, visit a pub, a shop, a restaurant or other social gathering, they are framed as havingspeech and body language ‘indiscipline’ as scripted by the disablist choreography of everydaylife. Disabled people fracture the (spatio) temporal rules of bodies passing by each other, con-gregating with each other and communicating with each other and non-disabled people arejolted out of the ‘usual’ dance of civil attention or inattention. A person with speech impair-ment is cast as someone who cannot play the game of social interaction and so will ‘botch’ theeveryday embodied norms of communication.

The ability to engage in ‘conversation’ is perceived as a key to defining ‘social competence’(Jordan and Kaiser 1996). This perception of ‘social competence’ is central to gaining access tothe everyday world. It is this defining of a ‘social being’ and its linkage with communication(or rather the norms of speech, timing and proprioception) that informs the withholding ofcommunicative capital. It is not enough to suggest that communication barriers can bedismantled by the proper provision of augmentative and alternative communication tech-nology and human facilitators. The ingrained norms and discourses about what constitutes‘communication’ need also to be tackled and deconstructed. Phenomenology offers a wayto critically interrogate the norms and values that propagate the notion of ‘communication’and so delineate their disabling effects.

Conclusion

The struggle to overcome ‘communication disablement’ has long been overlooked as a seriousissue within the disabled people’s movement. Themovement has understandably underplayed thediffering realities of different impairments, and since communication is its principal weapon it isnot surprising that people who face communication barriers tend to be under-represented (Jordanand Kaiser 1996; Parr et al. 2003a). Thus there is a need for the movement to incorporate what isrequired to empower people with speech impairment into its ideas and activities. The theoreticalposition of the social model sustains this marginalisation of people with speech impairmentbecause it has collapsed the meaning of impairment into a ‘homogeneous notion’ in which anemancipatory politics of disability is associated with getting into and around social space.


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There is awareness within the disabled people’s movement about issues relating to ‘com-munication disablement’. However, communication barriers need to be addressed collectivelyand openly by people who experience them (Rae 1993; Parr et al. 2003a). The discussion mustbe a reflection of their carnal position. It is for people with speech impairment to claim andclarify the issues for themselves. Mike Oliver acknowledges as much in his forward to Jordanand Kaiser’s (1996) book. He states that people with speech impairment – empowered by theirown collective self-organisation – should become much more centrally involved in the disabledpeople’s movement. This will enable their individual and collective voice to be registered. Thischapter has attempted to show how a phenomenological sociology of impairment can facilitatepeople with speech impairment in their struggle to have their voices acknowledged and legit-imised. I have offered an alternative understanding of ‘communication disablement’ by assertingthat the ableist nature of temporal norms make it difficult for people with speech impairmentto acquire and sustain the physical and cultural capital necessary to participate in everyday socialencounters. The choreography of the (spatio) temporal domains tends, therefore, to invigoratethe exclusion and estrangement of people with speech impairment.

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16

BLINDNESS/SIGHTEDNESS

Disability studies and the defiance of di-vision

Ben Whitburn and Rod Michalko

Introduction

Though a generally easy-to-define category of impairment, blindness, or vision impairment,is uniquely positioned socially, culturally, politically and theoretically. Dichotomies persistbetween the ways that vision impairment is embodied and culturally understood, and howsocial services including education, employment and welfare are distributed to people markedwith its diagnostic brand. Ableist notions have a unique impact on concepts of vision, andthus on blindness, to which disability studies scholarship must respond. Attentive to thesecomplexities, this chapter explores the potential for disability studies to counter the ongoingmarginalisation of people living with vision impairment by interrogating ocular-centric andocular-normative representations of blindness (Bolt 2005; Jay 1991; Jenks 1995; Levin 1997).These concepts refer to the propensity of dominant epistemological assumptions aboutsightlessness to reify totalising notions of need that are complicit in dividing blind peoplefrom the mainstream population in seemingly innocuous and munificent ways. FollowingTitchkosky (2009), how disability generally has been conceived in the scientific and socialscientific literature is at least partly responsible for this rendering. It is in this way that thelimitations imposed on people with vision impairment in their (our) day-to-day lives areperpetuated. Moving away from comfortable yet totalising definitions of blindness andsightedness, we draw instead on various theoretical strings in critical disability studies toexamine the constitutive influence of linguistic conventions, and to emphasise relationalities –interdependent relationships between people with vision impairment and others, technology,animals and other non-human entities.

In this chapter we move gingerly – as people with vision impairment might be expected todo – through three sections. In the first section, we consider dominant ways of being(ontologies) fully sighted or otherwise, and ways of knowing (epistemologies) vision impair-ment and sightedness through empiricism – the theory of knowledge production that privi-leges sensory experience. In the second section, we examine developments in disabilitystudies that have emerged over the years in so far as they relate to blindness. These includethe consideration of how religious, medical, social and critical conceptualisations of disabilityrelate to vision impairment. This discussion leads us to consider both the limitations andpotential openings for disability studies to defy marginalisation for people with vision

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impairment. We conclude the discussion in the third section by drawing on critical theoreticalstrings to explore everyday practices such as employment and welfare, physical orientation andtravel, which in turn develops a type of knowledge production that depicts the limitations ofvisual ableism through an attentiveness to shared responsibility of sightedness and blindness.

Di-visions in knowledge

Before proceeding further, we make a crucial point, gesturing insistently at the subtitle of thischapter. The relation between being, knowing and seeing is neither innocuous nor innocent.Conventional empiricism, which dominates Western philosophical approaches to knowledge,privileges a particular fixed way of conceptualising the world through the senses, foremostamong them sightedness. Empiricism follows a single guiding principle: nihil in intellectu nisi

prius in sensu (‘nothing in the intellect unless first in sense’), a radical concept for its time thatdiverges from rationalism.

In An Essay on Human Understanding, seventeenth-century English philosopher John Locke([1706] 1991) attended to a problem of the senses posed by what Schillmeier (2006: 472) called‘the blind figure and the “labour of human knowledge”’. For Locke, particular sensations aredetected through one or more of the senses, such as colour through the eyes, sound throughhearing, and so forth. Locke conceived of primary and secondary qualities in nature. Whereassightedness is a primary quality of independent and intrinsic principles from which reactionsoriginate, secondary qualities, such as words and sounds, produce sensations that are external topeople. Invoking the figure of a blind man, Locke’s steadfast conviction was that absence ofsight, and therefore of ideas about colour and light, is evidence of the significance of full sensualexperience. Unlike a sighted person, a person bereft of sight is primarily sequestered fromknowledge and is subsequently dependent on secondary qualities of descriptors – words andtouch. Schillmeier describes Locke’s thesis on empiricism as a doctrine of knowledge wherein‘Sight, light and ideas are in perfect communication and their relation produces faultlessknowledge in a smooth, effortless and immaterial process, as if there were no gap between thething perceived and the thing understood’ (ibid.: 474). In making these claims, Locke makes anumber of assumptions that have gone on to shape modern epistemological politics aboutblindness and sightedness that resonate today.

Locke recognised that sightedness is a provisional sense: blindness could befall someone, orthey could be restored to light. To this end, invoking the blind figure to substantiate hisempiricist will to knowledge, Locke pays particular attention to the account of an adventi-tiously blind person, as well as to the famous Molyneux problem – stories that in theirrecounting present polar opposite circumstances. The adventitiously blind person loses hissight after some years of seeing, and Molyneux, who was himself married to an adventitiouslyblind woman, questioned whether or not a person with vision impairment who had theirvision restored would immediately be able to recognise shapes by sight. Locke posited thatthe person’s sightlessness would constrict their knowledge, irrespective of the condition withwhich they commenced (sightedness or blindness), on account of the superiority of learningthrough the primary quality sense of sight. The fact that medical science has since theseventeenth century continued to attempt the preservation of eyesight for any number ofvision conditions ensures that the ethical question posed in Molyneux’s problem is continuallyretested (Kleege 2010; Schillmeier 2006).

More important to our discussion, however, is the epistemological politics for blind andsighted people that emerge from Locke’s essay, on account of its combined physiological andsocial implications. Both Kleege (2010) and Schillmeier (2006) insist that Locke’s empirical

Blindness/sightedness

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project on blindness not only privileges visual perception, but also privileges sightedness as anauthority to speak of blindness experiences. Kleege wonders why the experiences of Moly-neux’s blind wife had not been foregrounded in his problem. Schillmeier too rejects thelimited notions of visual and touch perception that Locke discusses in his essay from whichsuch lasting impressions of blindness have emerged. That only less than 10 per cent of peoplemarked legally blind have no visual perception (Bolt 2005) seems to evade the seventeenth-century theorists in favour of stereotypes, or what Kleege (2006: 522) refers to as ‘thehypothetical blind man’ whose experience is born out of clinical experimentation underartificial conditions. The foundations of knowledge about blindness, then, emerge from anunderstanding that ‘facts speak for themselves’ – that objective, systematic experimentsdepose interpretive bias through neutral observation that is not tainted by linguistic and cul-tural mediation leading to contamination. This arises even though the philosophy of sciencehas refuted the objectivity of data experimentation (St. Pierre 2016; Kuhn 1962).

The conclusion that Locke reaches excludes the complexities of blind experience in favourof external expertise. A host of medical, psychological and pedagogical understandings bothexplain what it means to live with vision impairment and provide access to citizenship. Thedomination of the discussion of sight rather than blindness frames it above all as a problem ofsensory absence based on and reifying stereotypes. As Schillmeier (2006: 479) says, ‘blindnessis made present by functionally divided perspectives (di-visions as it were) of medical andprofessional care, knowledge and expertise on an individual deficiency of vision’. We will returnto these di-visions, to which disability studies must respond defiantly in order to substantiate itscontribution to knowledge, later in the chapter. For now, let us consider the transdisciplinaryfield of disability studies and its engagements with vision impairment.

Disability studies and vision impairment

Routine conceptions of vision impairment have much in common with scholarly incursionsinto disability, or what we refer to here as disability studies, as a consequence of deeplyimbedded societal values that are difficult to temper, perhaps related to the cultural valuesgrounding Locke’s empiricist orientation (Goodley et al. 2012). Disability studies is a dis-cipline of academic research and associated professional practice that emerged in the 1970sacross many Western European and North American countries (Goodley 2013; Kristiansen et

al. 2009; Meekosha and Shuttleworth 2009; Oliver 2009; Schillmeier 2006; Shakespeare2013). Similar work that sits beneath the banner of disability studies has emerged morerecently in countries of the global south (Grech 2009; Meekosha 2011; Nguyen 2018) thatcontextualises barriers to inclusion in developing settings. Disability studies, in conjunctionwith disability activism, developed out of a need to challenge the cultural, structural, eco-nomic and material barriers that prevent people living with impairments from participatingequitably. A host of national and pan-national responses to disability have been mobilisedthrough these developments, including the International Year of Disabled People in 1981,and the United Nations Convention on the Rights of Persons with Disabilities (2006), whichhave raised disability as a global human rights issue (Gill and Schulund-Vials 2014). Disabilitystudies has also had an effect at a more practical level in many international contexts: trainingand education organisations draw on disability studies directly, as do social policy, legislativediscourses and professional practice in some fields (Goodley 2013; Tremain 2015).

Contemporary disability studies, both in minority world and in majority world countries,engages with diverse theoretical resources to develop nuanced conceptual responses to mar-ginalisation. The shift towards theory has demarcated disability studies from what might now


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be understood as critical disability studies (Goodley 2013; Meekosha and Shuttleworth 2009;Shildrick 2012; Tremain 2015) which opens up opportunities to learn how disability coincideswith any number of intersectional markers of difference, including embodiment and culturalmediation, when thinking about and addressing the challenge of inclusion. According toGoodley,

If one was to compare the contemporary state of critical disability studies with disabilitystudies from the last century, one would have to conclude that much has changed – notleast – in terms of the growing theoretical confidence of this transdisciplinarycommunity.

(2013: 642)

While a critical approach to disability studies has come in for some contestation for being toofar removed from material experiences of marginalisation in favour of the incitement to theory(Barnes 2012; Shakespeare 2013; Vehmas and Watson 2014; Watson 2012), there are threeprincipal conceptual positions that underpin disability scholarship that lead to the contemporarymoment: the moral, individual/medical, and the social models. These three positions ofdisability align with three vision impairment-specific conceptualisations of the moral, thepsychological and the learned explanations. We will undertake a reading of these threecomparable patterns through a discussion of vision impairment scholarship specificallybefore considering some of the innovations afforded through the critical turn.

The moral explanation

Moral conceptualisations of disability, or what Wheatley calls the ‘religious model’ (2010: 65),developed from pious texts such as the Bible, and as Kristiansen et al. write, it formed the‘generally prevalent view in antiquity’ (2009: 2). While Barnes (1997) suggests that infanticidewas generally inflicted on babies born with disabilities in ancient Greek times, the generalpremise of a moralist position on disability is that the presence of impairment is evidence of themoral failings of an individual, or his or her family. Those who acquire an impairment later inlife are in receipt of punishment for similar sins of spirituality. Of significance to religion is avisible division, namely that impairment is imposed on the individual or their family, and ismade observable in its physicality (Stiker 1999: 29). The provisional aspect of vision impair-ment is cited in the New Testament of the Bible as either reward or punishment, whichpositions Jesus as a miraculous and divine healer as he cures a man of blindness who he deemsworthy of sight (Wheatley 2010). That religion was capable of this type of control evidences acertain antecedence to the latter medical vs social model debates, in which impairment anddisability are incongruent concepts of individualisation and acculturation. For Wheatley, boththe social model and the religious model share analogous concerns in that through religion,spiritual health took precedence over medical intervention, which concerned a person’s moraldevelopment (social community) over their individualised medical needs.

With specific regard to vision impairment, blindness features in the ancient Greek ‘cultureof light’ at the limits of social and cultural boundaries, although paradoxically, vision-impaired people are also celebrated for having superior sight (Bernidaki 1990). ‘For theGreeks, the blind figure lives within a noncomprehensible realm of “darkness” that is and isnot human’ (Schillmeier 2006: 472). The Greek myth of Oedipus appeals to the religiousmodel of vision impairment in its depiction of blinding as punishment. Oedipus kills hisfather and marries his mother, and upon realising his slip in familial judgement, gouges out


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his own eyes. If we believe Freud’s psychoanalytic theory of the Oedipus complex, Oedipus’sfate resonates with us because it highlights sexual desires and subsequent conflicts that residein us subconsciously.

The paradox in Oedipus’s tale is that blindness is portrayed as a fate worse than death(Bernidaki 1990; Kleege 1999). Kleege argues that perhaps unlike in the case of punishmentby death, the effects of making a sinner blind as retribution indelibly recasts the lives ofeveryone around the blinded person in destructive ways. By association, ‘blindness inverts,perverts, or thwarts all human relationships’ (1999: 71). While this seems unlikely for thecitizenry, Bernidaki, in contrast, demonstrates that another effect of blindness is to become asupreme soothsayer. In any case, a lingering legacy of religious and moral contributions toknowledge on vision impairment is what Scott (1969) calls common-sense explanations–folkloric representations wherein vision-impaired people possess personalities and psychol-ogies that set them apart from sighted people. In line with the Greek paradox of darkness andsupremacy both being inherent to the condition of vision impairment, and also with JohnLocke’s empiricist values of sensual experience, the world that people with such afflictionssupposedly inhabit is less cluttered with knowledge, therefore providing the benefit ofspiritual pre-eminence. According to Scott,

This world, which is believed to be less gross and materialistic than our own, is saidto be infused with a spirituality that gives its inhabitants a peculiar purity andinnocence of mind. Those who live in the world of the blind are believed capableof experiencing unique inner feelings and rising to aesthetic heights that are beyondthe abilities of all but the most unusual of sighted men.

(Ibid.: 4)

Living, as we do, in a world not set aside from sighted individuals, it seems simplistic to offersuch an explanation of blindness, let alone to overcome the contradictory dualisms that amoral position on disability implies.

The medical/individual/psychological explanation

A therapeutic response to what is conceived of as a biological deficiency has, since theseventeenth century, given rise to that which has often been described as the medical, indi-vidual or personal tragedy model of disability (Oliver 2009). The ascendancy of medicalpractice that has emerged from this time positioned impairment as an objectionable conditionthat could and should be ameliorated. The identity of the person with an impairment thusmoved from a moral wrong to an individual one. As Kristiansen et al. write, ‘disability hasbeen explained by scientific methods, and reduced to an individual’s physiological or mentaldeficiencies’ (2009: 4). To some extent we have already visited the legacy of the medicalmodel in our discussion of Locke, wherein essentialist, fixed understandings of impairmentpreface any account made possible by people with disabilities, and the expertise of peoplewithout impairments takes a heightened meaning over the experiences of those livingwith them.

That medical development began to find restorative solutions to impairing conditions isnot in and of itself the sole cause for alarm (Shakespeare 2013). For Barnes (1997) and Oliver(2009), the medical model produced material conditions that led to the segregation of peoplewith disabilities from Western societies, with specific reference to the rise of industrialcapitalism. People with impairments, who were believed to be unable to contribute to capital


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growth, were institutionalised under a regime of either physical or discursive powers, such asmental institutions (physical) or disability employment (discursive). To this end, Barnes citesWolfensberger (1989) in his explanation of service industries in the United States and theUnited Kingdom which function to segregate the lesser valued person in institutions toensure the employment of others. For these authors, the medical model and its outwardeffects has become a hegemonic ideology, one that continues to have deleterious effects.

Following the ideas of Barnes (1997) and Oliver (2009) with reference to vision impair-ment, the medical diagnostic apparatus has responded to both impairing conditions ofblindness, and the psychological effects of sight loss. While the former manifests itself insimple terms of surgical and general practice responses to vision loss, such as cataract removaloperations or glaucoma prevention testing, the latter is based on psychological rehabilitativereactions to support the individual to come to terms with the onset of his or her impairment.A common response to sight loss, from this perspective, is a reduction in mental health andsocial connectedness, to which psychological strategies can respond (Thurston 2010; Thur-ston et al. 2010). According to Scott, a psychological explanation of vision impairmentassumes a fixed set of criteria, namely ‘the psychological reactions that all blind people haveto becoming blind, and the enduring impact of the condition upon basic components ofpersonality’ (1969: 6). The psychological orientation suggests that if these reactions are notmanaged, they can manifest in shock, grief and, apparently, enduring depression. This beha-vioural approach to vision impairment thus relies heavily on concepts of adjustment: thecapacity to adapt to impaired sight and to draw on other senses to compensate for the lackwill lead to increased – or retrieved – independence. Accordingly, much is made in theblindness literature about the psychological development of self-esteem and self-concepts(Scott 1969; Thurston et al. 2010; Tuttle and Tuttle 2004).

Additional developments emerging from the medical dominance of vision impairment arespecial educational services, and special employment ‘work for the blind’ initiatives. As a con-sequence of these developments, the literature emerging from a medical and psychologicalresponse to vision impairment might be characterised as practice-based rehabilitative studies.Specialist schools for the blind have been in existence in many countries since the third century(Davis 1995) and employment services have also had a long historical hold on the vocationallives of people with vision impairment upon their transition from special schools (Scott 1969).However specialist schooling services might have been perceived originally, with the increase ininternational legislation mandating inclusive opportunities, their role has of late diminished intothat of support to mainstream systems. Furthermore, ‘work for the blind’ initiatives have tendedto close down. In circumstances in which these services continue to exist, much is often madeof their capacity to offer choices to people with vision impairment and their families – a claimthat can lead to pejorative results.

The social and learned explanation

The social model of disability contrasts sharply with the medical perception, as articulated byKristiansen et al: ‘disability is a social problem that should be dealt with through social inter-ventions, not an individual problem that is to be dealt with through medical interventions’(2009: 2). Central to the social model are two points. First, people living with impairmentswere core to its development, a detail that strengthens its significance to disability politics.Second, the principal contention of the social model is that there are a number of conditionsthat prevent people with impairments from accessing mainstream structures, such as schoolingand employment. These material barriers are of particular importance to the social model, as


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stated in the Fundamental Principles of Disability published by the Union of the PhysicallyImpaired Against Segregation (UPIAS 1976, quoted in Oliver 2009: 42):

[T]he particular form of poverty principally associated with physical impairment iscaused by our exclusion from the ability to earn an income on a par with our able-bodied peers, due to the way employment is organised. This exclusion is linked withour exclusion from participating in the social activities and provisions that make generalemployment possible.

One characteristic of the social model is that it makes a distinction between the termsimpairment and disability, and attempts to define them precisely. Whereas an impairment isembodied – a person might be physically, psychosocially, intellectually or sensoriallyimpaired – disability refers to the social and material barriers that are experienced on accountof inappropriate responses by social communities towards impairment. The late Mike Oliver,who was centrally involved in the development of the social model, signals the importance ofthis distinction: ‘this turned the understanding of disability completely on its head by arguingthat it was not impairment that was the main cause of the social exclusion of disabled peoplebut the way society responded to people with impairments’ (2009: 43).

The social model has gathered much steam internationally. It informs the Convention (2006)and may have influenced a suite of UN policy initiatives into disability inclusion in education.Country-specific responses to disability and education such as in England (Rieser 2008) andmember states of the European Union (European Agency for Special Needs and Inclusive Edu-cation 2018) generally cite the social model as underpinning principles to inclusion. The socialmodel also sets the theoretical agenda of many disability activist organisations throughout theworld, such as Disabled Peoples’ International (2012) and the World Blind Union (2014).

To draw on a position of vision impairment made possible through the social model, as doesBolt (2005), is to recognise that disability manifests itself through preconceived assumptions ofvisual necessity over alternative ways of engaging with ones’ social and material surroundings.Therefore, under these conditions, what marginalises a person with impaired vision are theinstances wherein social reforms could counter needless obstacles to access. Bolt develops thisargument through a series of examples, including the marginalisation meted out to a personwith vision impairment whose financial institution provides account details only in print; res-taurants that bar guide dog users from entering their premises; home owners and local councilsthat fail to maintain overhanging obstacles not detectable with white canes; and retailers whoneglect to provide sighted support. For Bolt, these examples are suggestions among innu-merable others that pertain to employment, housing, transportation, education, trainingand leisure – obstacles that may not afflict people who live with their vision intact.

While a social model explanation of blindness seems plausible, not least with regard to thedecline of disabling conditions of text accessibility through technological advancements(Whitburn 2017), missing from this conceptualisation is a consideration of the combinedways that impaired vision and its social consequences are experienced by individuals. That is,a strict materialist stance neglects to account for the potential ways that people with visionimpairment are influenced, either affirmatively or adversely, through both their biologicalcircumstances and their social conditions. For Scott (1969), the disability of blindness is alearned social role, one that is made conceivable not least through intervention programmessuch as schools and work for the blind. ‘Blind men [sic] are made, and by the same processesof socialization that have made us all’ (ibid.: 14). Despite their rhetorical adherence to the socialmodel, blindness agencies are complicit in portraying blindness as a pitiable condition – a deeply


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contradictory position that visits the moral, charitable and medical conceptualisations of visionimpairment simultaneously (Bolt 2016).

Although resonant of Wolfensberger’s (1989) warning about the dividing practices ofparticular human services, important to the argument contextualised to the social model overits medical precursor is the emphasis on learned social roles. All people who live with theunique manifestations of blindness learn to live with their circumstances in very specific anddiverse ways. These can transcend simultaneous and incongruous positions of denial inresponse to personal anxieties and those perceived by others as slowness, stupidity and fear.French (1993), who writes from her perspective of growing up as a child with visionimpairment in the UK, provides an instructive account of her own perceived responsibility tonegate the impact of her condition:

By denying the reality of my impairment and disability I protected myself from theanxiety, disapproval, frustration and disappointment of the adults in my life. I deniedmy impairment and disability in response to their denial, which was often motivatedby a benign attempt to integrate me in a world which they perceived as fixed. Mydenial of impairment and disability was thus not a psychopathological reaction, but asensible and rational response to the peculiar situation I was in.

(Ibid.: 93)

French demonstrates that vision impairment and disability do not form two sides of a dualisticcoin. Instead, any conceptualisation of disability is a complex form of consciousness (Titch-kosky 2011) that is socially driven. For reasons such as these, and undoubtedly countlessothers, the social model of disability, like the religious and medical explanations before it,lacks conviction against the binds that prevent people with impaired vision from gaining fullcitizenship. A more critical position must acknowledge some of the complexities that weraise here, in order to carry more conceptual strength. We turn to some of these ideas in thefollowing sections.

Critical explanations

Despite the theoretical positions taken both from within and outside disability studies, parti-cularly the latter materialist approaches, people with vision impairment continue to inhabitthe fringes of the societies in which they live. Media reports point out that blind people arereportedly five times less likely to gain paid employment than people without impairedvision, and twice less likely than people with other types of impairment (Cullen 2011). At thesame time, although the social model might explain ocular-centric nuances of customs thatcan be exclusionary for people with vision impairment such as making eye contact, and theemphasis on facial expressions and body language (Bolt 2005), these conventions seem unli-kely to be interrupted through materialist critique alone. Indeed, not knowing what eyecontact is let alone how to manipulate this form of communication can be the cause ofconsiderable anxiety for people with impaired vision. As Kleege writes, ‘Of all the normalvisual experiences that sighted people take for granted, the one I find most confusing is eyecontact. I could live with this confusion except that sometimes eye contact seems a matter oflife and death’ (1999: 122). If employment is contingent upon eye contact, which in somecases it probably is, Kleege’s point is well founded.

Returning to Locke’s (1991) empiricism, a fissure has emerged in the binary between amedical and individual model (primary qualities) understanding on the one hand, and a social


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model depiction (secondary qualities) on the other. Locke’s thesis was to distinguish betweenprimary and secondary qualities, giving superiority to experiences generated through the pri-mary, visual sense over powers of sensations that are external to the body. Although disabilitystudies via the social model may have been successful in overturning an emphasis on primaryqualities in favour of secondary ones, this reversal does little to move beyond modernist read-ings of the epistemological politics of blindness (Schillmeier 2006). Other contributions to dis-ability scholarship, such as the affirmation model (Swain and French 2000), phenomenologicaldisability studies (Kleege 1999; Michalko 1999; Titchkosky 2009), feminist disability studies(French 1993; Garland-Thomson 2005; Morris 1992), postconventional perspectives (Shildrick2012), and critical realism (Kristiansen et al. 2009; Shakespeare 2013; Vehmas and Watson2014; Watson 2012) build on social model considerations. Yet what these diverse approacheshave in common is their re-emphasis on the body, impairment and the embodiment ofimpairment (see Goodley 2013; Meekosha and Shuttleworth 2009).

The turn towards the corporeality of impairment assumes a critical perspective, the scholar-ship of which critiques the forces at work that perpetuate exclusion for people with disabilities,namely the attributes of personhood that are valued above all others in a modernist, neoliberalimaginary. These include autonomy, agency, rationality and control over one’s own body –

most notably through individual distinctions between the self and the other (Goodley 2013;Shildrick 2012). Critical disability studies therefore goes beyond preceding models of critiquethat explore both sides of any di-visions (Schillmeier 2006) by embracing the ontological turn(St. Pierre 2016). This transformed concentration, as Shildrick writes, ‘challenges every one ofus to rethink the relations between disabled and non-disabled designations – not just ethicallyas has long been the demand, but ontologically, right at the heart of the whole question of selfand other’ (2012: 30). As such, critical disability studies sets the stage for ‘questions of embo-diment, identity and agency as they affect all living beings’ (ibid.: 30) – to which we would addnon-human beings both living and non-living, such as language, technology, animals, theenvironment and communities.

It seems necessary, to us, to concentrate on collective understandings of vision impairmentin order to counter the persistent barriers to conceptual inclusiveness for people living with it.This demands that we consider how blindness informs sightedness – how people, bothsighted and with impaired vision, interact with matter (and how matter interacts withpeople), language, resources, education, employment and mobility. Responding explicitly tothis provocation is important because it invites us to consider what sort of knowledge con-stitutes the positioning of vision impairment and people, animals and things living in andthrough it, and then in what ways this might be defied through scholarly practice thatdemonstrates its deleterious effects. Following Shildrick, the purpose of this approach is notto supplant extant theoretical bases of disability studies, but to respond to embodied, social,cultural, political and discursive understandings of blindness across various theatres of life, andto ‘maximize the ways in which we can confidently develop our own agenda for [criticaldisability studies]’ (2012: 31). Significantly, a critical disability studies approach to studyingvision impairment acknowledges that universal categorisation and theorisation is implausible.The limitations imposed by impaired vision are dependent on a variety of intersectional andembodied differences, such as ethnicity, culture and sex. Vision impairment, unlike the wayin which Locke conceived it, is itself also variable – fluid conditions of embodiment (causesof vision impairment) interact with any number of ambient circumstances (light, colour,wind, rain, tactile) and social conditions that ensure continual vagaries of conceptual stability.

An approach to disability studies that picks up on this avenue of inquiry draws directly oneveryday practices of people with impaired vision. A richly demonstrative body of scholarship


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has emerged from the critical turn in which the embodiment of blindness is explored. Thisexploration emphasises relational aspects and rejects the di-vision that has dominated theepistemological politics of vision impairment (Schillmeier 2006). Valuable to this work, asSchillmeier notes, is the purposeful way in which it exemplifies that ‘blindness does notrender itself easily to the realm of the legacy of epistemological politics but name[s] alter-natives to it’ (ibid.: 481). By providing ‘critical reflection or reflexivity to revisit ideas that wemight have taken for granted’ (Goodley and Runswick-Cole 2016: 2), limitations previouslyassociated with blindness can be reframed. We explore in the following sections how wecome to know blindness, how we conceptualise it in language, and how as an embodiedphenomenon it moves us to emphasise relations with other people, animals and technology.It is in these three concerns that we anticipate disability studies scholarship will engage morepurposefully with blindness as the field develops.

We all come to know blindness and sightedness

Whether fully or partially sighted, congenitally or adventitiously blind, each person comes toknow blindness in particular ways. The onset of impaired vision confers onto a person acomplexity that Michalko calls an ‘inescapable epistemic contingency’ (2001: 356), whichinitiates a lifetime of continual negotiation. In this sense negotiation is necessarily linked todisclosure, accessibility, navigation, guidance and reassurance, and its inevitability arises fromthe cultural phenomenon that blindness is extraordinary in relation to the conventional order ofthings. While this detail seems all but fixed, negotiation is contextually and socially contingent.Take, for example, the necessity to disclose one’s disability as an integral aspect of one’s everydayoccupation, as Kleege is obliged to do as part of her role as a university educator when about totake a class:

I tell the class, ‘I am legally blind’. There is a pause, a collective intake of breath. Ifeel them look away uncertainly and then look back. After all, I just said I couldn’tsee. Or did I? I had managed to get in there all on my own – no cane, no dog,none of the usual trappings of blindness.

(1999: 9)

These trappings of blindness to which Kleege refers, but does not rely upon, might precede aperson, thus announcing an anomaly of the teacher’s embodiment, and possibly disrupting thenormative order of teaching and learning. The epistemic contingency might be escaped, giventhe lack of symbolism. Without these trappings, Kleege’s verbal announcement introduces herstudents to vision impairment, perhaps for the first time. However, for the blind teacher, partof the onus of disclosure is the need for reassurance; that nobody will be confused or uncom-fortable because of the teacher’s impaired vision is as important to the learners and the teacheras it is to the university. As Kleege says, ‘I must talk about it to dispel possible confusion ordiscomfort’ (ibid.: 11). This explanation might stop there, yet anchoring the consequences ofdisability solely to the individual runs the risk of placing responsibility for its implications on theteacher alone.

Disclosure, though, like disability and blindness, carries social inferences. Similarly toKleege, Michalko describes disclosing on the first day of semester:

My course, along with every other course in this university and in courses in uni-versities everywhere, is about to begin in the midst of the ubiquitous, taken-for-granted


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and thus unnoticed ‘sense of sight’. Like the air we breathe, sight is everywhere in myclassroom, and like the air, it is not noticed and not even seen. The classroom – itsequipment and social organisation – all bear the mark of sight; students ‘see’ and assumethis of one another and they assume that they all see the same things and in the sameway. There is no blindness visible anywhere in the classroom … till now.

(2001: 352, italics in original)

The epistemic contingency, for Michalko, is the presence of blindness that is pedagogical inits commitment to teaching students about sightedness, a daunting task that requires him toassume blindness as an intrinsic part of his identity. Thus, Michalko’s vision impairment maybe read as a social impairment (see Shildrick 2012).

Disclosure in the contexts in which we have described it here is contextually specific –

situations that we accept differ markedly for all people living with impaired vision. Moreoften than not, disclosure is a process of medicalisation, whereby institutions such as schools,universities and governments rely on diagnostic identification of blindness in order toapportion resources (Whitburn 2014). While this may infer a lack of agency for the personwith vision impairment – the diagnosed subject – they will (or at least should) nonetheless beengaged in ongoing negotiations over how the diagnostic branding affects them. The nego-tiators, then, are the blind person and to some extent his or her allies, while a ‘typical’ personwith sight is never given a context in which to question their sightedness.

Languaging blindness

As we have demonstrated, blindness and sightedness are achieved through social interaction,and social discourse relies upon the linguistic conventions to which we abide (Bolt 2005;Michalko 2001). Returning to Locke’s empiricism, it is no accident that seeing is legitimisedin Western conceptions of everyday life as the most dominant sense for knowing and movingin the world; moreover, language perpetuates this stronghold. As Rorty writes in the intro-duction to Philosophy and the Mirror of Nature, ‘To know is to represent accurately what isoutside the mind; so to understand the possibility and nature of knowledge is to understandthe way in which the mind is able to construct such representations’ (1979: 84). In theWestern tradition, these representations are made frequently possible using visual metaphors.‘An extensive vocabulary of “visuality”’ (Jenks 1995: 3) ensures that ‘routinely the voir insavoir speaks through our daily knowing and through our tacit rules of agreement’ (ibid.: 4).In Michalko’ s classroom, ‘the students have had many years of educational practice for“seeing” that “seeing is enlightenment and blindness is ignorance”. They have had years ofencouragement to “step out of the darkness” and “into the light” (see what I mean?)’ (2001:355), which he is compelled to disrupt by introducing them to blindness.

Similarly, figurative language that unquestioningly submits to the visual is habitually usedin published literature. McKnight and Whitburn (2017) refer to ‘the wince’ of recurrentlyencountering positivist language in empirical and conceptual work, incongruously designedto redress marginalisation in schooling. Beyond taking for granted that seeing is knowing,subjects of research are often ‘viewed’ using a lens – theoretical, practical, material – thatcreates distance. For McKnight and Whitburn, these linguistic tropes might be easy to ‘see’;however, researchers who use them are complicit in ‘reinforcing dominant ways of being andknowing; and of manipulating a looking glass through the closed circuit of reflexivity so as tosee a clear, objective picture of the issues at hand, otherwise known as “truth”’ (ibid.: 828).Instead, they suggest that researchers acknowledge that ‘language produces reality, distorts it,


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and works with it in unanimity to create explanation’ (ibid.: 829), and therefore to reach forother forms of representation – a warning that seems equally significant to any discipline ofdisability studies that is put to work to overcome ableism.

Emphasising relationality

Coming to know blindness, as we have demonstrated, necessarily entails a consideration ofpersonhood insofar as we are each part of an assemblage, or what Goodley and Runswick-Colerefer to as ‘collective humanness’ (2016: 1). On a day to day basis, any number of exteriorentities – people, animals, material objects, technologies – intermingle with blind individuals insupport of routine. To put this another way, interdependence – relations with other beings andmatter – facilitate everyday tasks such as mobility and travel, as well as inclusion and exclusion.Take, for example, how Michalko came to understand his need for guided support:

Suddenly I touched something with my left knee. It was a gentle touch, but a touchnonetheless. Just as suddenly, the voice of a woman: ‘No, out of his way. Comeover here.’ The touch I felt was a child! The anxiety that rushed through my bodyfroze me. I had almost knocked a child down two flights of stairs. There was noquestion now. I needed help.

(1999: 10)

That Michalko identified a need for help on the basis of his diminishing sight, and the asso-ciated imposition of danger to children, might be read as a set of circumstances upsetting to the‘fully functioning person as an entity psychologised, internalised, rational, autonomous andindividualised self’ (Goodley and Runswick-Cole 2016: 8). A tragedy or medical model con-ception would certainly hold this position, and Michalko’s vulnerabilities would be perceived asrecurrently inseparable from deficit. People can unquestionably feel this way when introducedto blindness. Yet to ignore the propagative potential of the relationship between Michalko anda guide – guide dog, person, technology – is to misconstrue blindness. Collective action isconstitutive of blind epistemologies, and an introduction to blindness should account for thisdevelopment affirmatively by decentring the individual. Michalko writes of his own introduc-tion to blindness to this end: ‘I could no longer continue with blindness alone. I needed aguide not only to get around, but also to “guide” others to the understanding that I was blind’(1999). This collaborative partner in blindness would take the form of a guide dog, Smokie,whose companionship would develop further ways of understanding in both the material anddiscursive terrains of sightedness and sightlessness. The two – person and dog – would morphinto one, advancing an embodied state of connected identity, and significantly, reshaping thephenomenon of blindness.

A two-in-one morphology might be understood to constitute everyday practices ofblindness, in concert with the negotiation of disclosure with which we commenced thisdiscussion. In ‘Travelling Blind’ (Michalko and Titchkosky 2018), the significance of therelational is further developed. The ways that two travellers – one sighted, one blind – inter-relate and are constituted within different environments creates openings for the examinationof sociocultural depictions of blindness. In unison, both carry agentic capacities, whichfunction in different ways. The authors explain this thus:

As they travel – one blind, one sighted – a certain oneness emerges – the oneness ofblindness travelling together. And yet, in the mist of oneness, one that obscures


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nearly all twoness, shapes are visible – barely, somewhat blurry, difficult to put intofocus – but, shapes nonetheless – two of them, one blind, one sighted, one, deficiency;the other, efficiency – two, travelling together as one.

(Ibid.: n.p.)

A relationality of this kind, in which the efficiency of sightedness supports the deficiency ofblindness in travel, also reaches to technological advancements. While travel aids includingwhite canes and guide dogs have existed for a long time, they can now be augmented withGPS and smartphone technology. Services such as Aira, which positions itself as an ‘assistivecommunity’, bring together phone applications with camera technology, data transfer and anetwork of trained professionals to deliver spontaneously accessible sighted support for almostany task. Whatever the technology understood as guide, blindness, as it moves in the worldand lives in the midst of others, blind and sighted others, is a relational social actor. This hasbeen the thrust of this chapter.

Conclusion

In this chapter we have traced the itinerary of disability studies as it relates directly to blind-ness and vision impairment. Starting with empiricism and its ableist, ocular-centric legacy, wehave considered disability studies and its contribution to knowledge through moral andmedical explanations of blindness, as well as the social, learned and critical developments thathave proceeded them. Turning to the embodiment of vision impairment and the significanceof relationalities, we demonstrate the impact of a type of scholarship that engages with thecomplexities of both blindness and sightedness and their simultaneous implications for eachother. This necessarily demands disability studies scholarship and scholars to elude ghettoisa-tion of their work (Wolbring 2012) by examining the ways in which we interact through thepresence of blindness; how we utilise language in positioning blindness and sightedness ineveryday speech and in research; and how we consider the relational aspects of everydaypractice. This sense of disability studies works unrelentingly and critically to disrupt ableismand empiricist traditions. The generative potential of an enhanced relationality such as thismight well be unbounded. But what seems certain to us is that their exploration throughdisability studies is necessary in order to develop the field in ways that purposefully challengenotions of seeing as knowing and blindness as ignorance.

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PART III

Social policy and disability:Health, personal assistance,employment and education

17

SOCIAL SUFFERING IN THENEOLIBERAL AGE

Surplusisty and the partially disabled subject

Karen Soldatic

Introduction

In 2011 Helen Meekosha, a leading Australian scholar, wrote critically about the ongoingdominance of disability representations from the global north. Drawing upon southern theorists,Meekosha aimed to contest the hegemony of northern disability sociopolitical representationsand the implicit assumptions suggestive of an apparent global state of disability and what it meansto be ‘disabled’. Meekosha argued that the continual northern canon to illuminate structural,institutional, sociocultural and political accounts of southern disabled embodiment was not onlyan act of misrepresentation, but more significantly symbolised an intellectual crisis within thefield itself. The northern canon neither represented southern ways of knowing and/or being, norillustrated southern disability subjectivities and embodied navigations of global relations of poweras played out on the ground.

Meekosha’s decisive capturing of the disability studies landscape has since encouraged anauthoritative platform of divergent work from the global south. Writers such as Chaudhry(2015), Grech (2015), Mehrotra (2013), Swartz and Marchetti-Mercer (2019), Soldatic(2019a, 2019b) and Watermeyer et al. (2019) have unearthed the richness and complexity ofsouthern disabled people’s lives, producing a range of seminal texts and southern anthologies(Grech and Soldatic 2016). Scholars such as Louise St Guillaume (see St Guillaume and Thill2018; St Guillaume and Finlay 2018) have named the eclectic theoretical tenants of this workas a distinct field of inquiry – southern disability theory – because of the complex life nar-ratives that capture the historicity of southern disabled lifeworlds. The invisibility of southerndisabled people’s embodied lifeworlds has thus slowly risen to the surface. Not merely ariposte to disability’s northern canon, this broad church of scholarship documents anddescribes the complex interwoven fabric of southern disabled lifeworlds. Taken together, itslocalised historicities articulate the continuity, transgressions and disruptions to global rela-tions of power that are embedded in disabled people’s negotiated southern realities, and thevarious responses which they elicit (Parekh 2007).

Importantly, this emergent body of work aims to illustrate what Meekosha first suggestedis the social suffering of the disabled subject. Drawing upon the seminal work of Kleinman et

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al. (1997), Meekosha (2011) argues that southern disability perspectives of ‘[s]ocial sufferingdoes not equate with the concept of personal tragedy as critiqued by disability scholars. It canbe historically and culturally located and relate to group burdens, troubles and seriouswounds to the body and the spirit’ (Kleinman et al. 1997, quoted in Meekosha 2011: 671).Furthermore, Meekosha (2011) proceeds to argue that the significance of the concept ofsocial suffering enables the reading of disability within the southern context to be understoodthrough examining processes of dispossession, pursued through northern nations and theglobal political economic regimes that sustain the continuity of colonial relations of power.

In this chapter, I take up Meekosha’s critical intervention in relation to the articulation of thesocial suffering of the disabled subject. However, within this chapter, I examine the concept ofsocial suffering as form of collective disability (dis)embodiment with the emergence of neoliberalgovernance as political hegemony and its dispossessing power. Thus, rather than situate the ideaof social suffering as something that emerges within the global power dynamics between thenorth and south, I examine the everyday forms of social suffering that have emerged for disabledpeople as a consequence of the global mobility of neoliberalism, particularly in its latest guise –austerity. The purpose here is to illustrate that neoliberalism is generative of a social system ofsuffering, particular for the class of disabled people who are now deemed to be partially disabled,with the onset of neoliberalism’s classificatory power.

Through this analysis, the narrative of the chapter seeks to explore neoliberalism as aregime of governance for disabled people and its particular logic in population management.The chapter suggests that neoliberal disability governmentalities represent an assemblage ofgeneral tendencies and conditions that render a certain class of ‘disabled people’ as ‘surplus’.The definition of ‘surplus’ used within this chapter does not conform to the growing body ofwork that suggests that some classes and categories of people are now surplus to the needs ofneoliberalism’s political economic re-ordering of the social order (see Roy and Sejpal 2019).Through examining the positionality of ‘disability fringe dwellers’ managed through the net-work of neoliberal population management technologies, that is, the partially disabled person,this chapter will contest global theoretical tendencies to define poor, working-class, disabledsubjects as surplus within an all-encompassing class of people. The chapter will illustrate thatthe sociopolitical location of partially disabled people is one of surplusisity, generating a uniqueform of surplus value with the global mobility of neoliberal biopolitical governmentality.Indeed, the partially disabled subject has become a highly valued commodity of exchange. Thestatus of surplusisity thus has a double meaning – being rendered as ‘surplus’ within the neo-liberal narrowing of the disability category is coupled by the surplus value extracted with thisgroup’s commodified value. Representations, commodified outputs of contractual relations,and management of the partially disabled subject’s day to day behaviour is highly exploitativeacross the neoliberal imaginary. The notion of surplusisity aims, therefore, to capture thisdouble meaning and its materialisation in everyday life for the newly classified partially disabledsubject. Surplusisity generates multiple forms of social suffering, as illustrated below, for thepartially disabled subject.

Neoliberalism and its reimagining of disability

The pinning down of neoliberalism as a singular system of power, a particular political eco-nomic form, an institutional technology of biopolitics, or as an enculturated fixed set of socialpractices is a difficult task. Ong (2007) suggests, however, that no matter how one seeks todefine neoliberalism, its expansive breadth of structural altering across the institutional matrixof everyday life has direct implications for our subjectivities, our sense of self and where we

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are placed in the world. While it has achieved hegemonic consensus at the global level, it has alsoprovoked contestation, resistance and novel negotiations, mobilising peoples across places andspaces against its most disruptive and destructive processes, albeit to little effect (Maddisonand Martin 2010). As Peck and Theodore (2015) suggest, we have not yet entered the periodof post-neoliberalism. Neoliberalism has adapted and changed, often becoming more perva-sive through the adoption of fiscal regimes to govern economies, democracies and peoples. Itis a multidimensional practice. It is not singular. Neoliberalism mobilises across territories,boundaries and borders; it transforms itself to local contexts, particularities and specificities. Itsadaptive power to local spatialities is often what is noted as its most deceptive force. Tocapture its tenacious adaptive capacities, Ong (2007) has argued that its ominous presencemeans many things to many people, often making it hard to understand its continuities,consistencies and coherence. Yet with its global solidification, neoliberalism has exhibited arange of general tendencies, structures and practices as the ‘defining ideology of the moment’(Giroux 2015: 175).

One of the key effects of neoliberalism (as Imogen Tyler (2015) suggested in her com-manding piece published in The Sociological Review) is the increase in new forms of severeinequality. This is not only in terms of income, but also in terms of life outcomes, health andopportunities. The Global Report on Inequality (Alverdo et al. 2018) concurs empirically withTyler’s positionality. Analysis of varying measures of individual and societal well-being make itclear that inequality between and within nations is increasing all over the world (ibid.). Thedisparate growth in global inequality across all indicators does not exist as a mere spectral pre-sence to the lives of a few within a single nation state, nor is it only marked by the historicityof global divisions between the north and south. This is not to suggest that such long-standingunderstandings of material inequality do not hold. Rather, as Oxfam recently reported,

The global inequality crisis is reaching new extremes. The richest 1% now have morewealth than the rest of the world combined. Power and privilege is being used toskew the economic system to increase the gap between the richest and the rest.

(2016: 1)

And henceforth, global inequality is now pervasive across all spheres of social life, andgeopolitical contexts, on any scale of measurement (Alverdo et al. 2018).

The growth in equality intensified with the onset of the global financial crisis of 2008.During this period the category of disability became a core state economic concern, and,indeed, the disability category moved from the periphery to the centre of neoliberal economicdebates (OECD 2009: 1). Outside of local variegation, international analysis suggests thatneoliberal disability policy tendencies converged around the restructuring of disability entitle-ments and the establishment of a narrow class of ‘fully’ disabled people deemed worthy of stateredistributive measures. The biopolitics of neoliberalism thus saw states actively removingdisability entitlements through the formulation of new measurement technologies – splittingthe disability category into grades of disability – not really disabled, partially disabled and fullydisabled. Effectively, since their implementation, fiscal outlays via disability redistributive trans-fer systems of cash transfers, services and supports have diminished significantly to a small group,as those redefined as not really and only partially disabled are pushed off disability pensions andinto the open labour market (Parliamentary Budget Office 2018).

Neoliberal biopolitical logic aimed to propel a large cohort of disabled people, who previouslywere protected, into the capitalist labour market, as a means to drive down wages throughneoliberal labour market re-regulation (see Grover 2018). This was particularly noticeable in


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countries such as Australia, where within 24 hours of the passage of social security and labourmarket legislation reclassified categories of disability into two distinct classes. Those deemedas only partially disabled no longer qualified for disability distributive transfers, payments andsupports, and were coerced into highly restrictive unemployment payments with mutualobligation reqirements to find work, of any kind (Soldatic 2019b). Despite widespread pro-tests and mobilisation against such reforms, the disability movement’s narration of the rightto work was coopted by the political elite to bring forward these new restrictive disabilityclassification systems in parliamentary democracies.

Furthermore, nation-states promised their local populations of disabled people that evenwith the ratification of the United Nations Convention of the Rights of Persons with Dis-abilities (2008), such reclassification did not preclude the realisation of disabled people’seconomic rights. Large-scale state investment, via contracted supports with private firms, tofacilitate disabled people’s access to jobs, of any kind, expanded rapidly (Biyanwila and Sol-datic 2016). Nevertheless, this provided neoliberal states with a powerful tool to privatisepublic systems of disability labour market supports and assessment regimes via the contractingout of such systems to corporations and practices of global population poverty management(see Peck 2011 for a full discussion of this process in liberal democracies). Such strategies ofthe re-regulation of the disability category alongside the labour market is part of the mobilityof neoliberal re-regulation (Soldatic and Sykes 2017). As Peck and Theodore (2015) argue,the re-regulation of distributive categories is, in fact, a form of global experimentation.Neoliberal biopolitical technologies of reclassification move from site to site, along with designexperts. The mobility of global policy elites transfers knowledge, learning and implementationknow-how, infusing local contingencies with global neoliberal technologies of povertymanagement (ibid.).

The retracting of the welfare state across distributive strategies of disability welfare provi-sioning, along with the contracting out of disability services and support through strategies ofprivatisation, means that globally, disabled people are increasingly subject to new, privatelandscapes of service provisioning. Rather than engaging with the state, disabled people arebeing managed by a plethora of private actors – frontline workers, health professionals andhuman resource consultants. These private but publicly funded neoliberal workers have thelegislative power to implement penalties and fines for basic misdemeanours and, occasionally,to restrict their access to welfare payments for extended periods of time for so-called badbehaviour (Soldatic 2019b). Thus, for many observers, despite its promises of personalisedaffirmation of disabled people’s capacity for economic participation on par with other citi-zens, neoliberalism is extending disabled people’s exclusions, particularly those ‘fringedwellers’ who are no longer seen in law as being sufficiently disabled to continue theirexclusion from the neoliberal market. Yet, as illustrated below, even though this new classof partially disabled people is no longer classified as disabled, their surplurisity becomescentral to the biopolitical management of the neoliberal state, and its privatisation of statewelfare to private firms and transnational corporations.

Partiality and the affective politics of neoliberal invalidation

New structures of population management and administrative governance have emerged tocapture these rapidly accelerating unpropitious inequalities and those that are particularlyvulnerable to its effects. Population management occurs across the political, economic, social,cultural and affective fields. Tyler (2015) illustrates such arguments through her discussion ofthe working-class subject and the stigmatisation of precarious working-class identities in


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popular discourse. Through a creative interweaving of popular modes and mediums of socialmedia sites and TV genres, such as that of reality TV programmes, Tyler astutely maps thecultural politics ascribing popular imaginings of neoliberal discourses of stigmatisation withgrowing class inequality. Tyler illustrates that popular enculturation of neoliberal inequalityaims, first, to normalise narratives of social inequality as personalised failure and, second, tostigmatise those who are suffering from the devastating effects of working-class backsliding andprecarity. Significantly, Tyler invites us to understand the ways in which such popular mediumsof visualisation seek to perpetuate the stigmatisation of severe levels of poverty, inequality andprecarity despite its structural generation. Thus, rather than generating a cultural politics ofcompassion and redress, the enculturation of stigmatising poverty is not only normalised, butactively promoted through cultural portrayals of class disgust towards the precariate, thedisabled, the poor and the excluded as a governmentality technique of social control.

Neoliberalism’s affective politics has drawn upon three affective strategies, which, whencombined, draw up popular imaginings of the ‘disabled welfare fraudster’ (Soldatic 2019b).First, the politics of resentment has been actively pursued among the political elite so as toposition disabled people as a wasted class, a lazy, do-nothing class, that needs to do little tosecure redistributive systems of welfare from the state (Hughes 2015; Soldatic 2019b). Thefostering of moral resentment among the working class with the rise of class economicprecarity and intensified insecurity is generated in political discourse by juxtaposing the ‘hard-working percarious working class’ against that of the ‘disabled welfare scrounger’. Resent-ment used in this way aims to position disability redistributive systems as unfair and unjust,particularly for those who clearly do not appear to be ‘disabled’. Thus, resentment entails anaffective politics that generates layers of distress for disabled people, personally and collec-tively, that undermines their personal sense of ontological security alongside their collectivenotions of solidarity by splitting the ‘disability’ category.

As Roulstone and Morgan (2014) have illustrated in their work with disabled people, thereproduction of the politics of resentment appears to be a deliberate political tactic to gen-erate forms of invalidation towards those disabled people with redistributive entitlementswho do not necessarily ‘appear’ disabled. For this group of disabled people who exhibitmarked visualised displays of ‘being able’ in some way, Roulstone and Morgan (ibid.) identifythe ways it becomes difficult to validate oneself in public. This group of disabled people, whoare not visually identifiable as clearly disabled, has become highly vulnerable to forms of abuseand aggression when moving around in public spaces and places (ibid.). The ongoing perpe-tuation of neoliberalism’s affective political strategy to invalidate their subjectivities is personallyfelt as they move fearfully through the streetscape, or refrain from moving beyond the safety oftheir own home (Morgan 2017). Sayer (2005: 148) suggests that these internalised stigmatisingeffects have been a core component of neoliberal anti-egalitarian ideology. Its purpose is toforeground an affective politics of individualised responsibility, undermining structural, institu-tional, social and political causes of inequality that are generative of neoliberal regimes of powerand its resonating biopolitics in everyday life.

The neoliberal politics of resentment are, however, only one facet of neoliberal invalidation.Mobilising the politics of resentment requires more affective work to shore up popular consent toinstil a new classificatory logic with neoliberal welfare retraction and the splitting of the disabilitycategory (Soldatic 2019b). The affective politics of disgust and shame are central pillars of processesof reclassifying disabled people into new classes of deserving and undeserving poor, once theaffective politics of resentment have propagated. Feelings of deep shame and personal failure areoften articulated by disabled people when narrating their journeys to make redistributive claimsupon the state (Reeve and Soldatic 2014; Morgan 2017; Soldatic and Morgan 2017).


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As Morgan (2017) has illustrated in her work on rural women with disabilities who aredeemed ‘partially disabled’ and whose bodies and minds often fluctuate between states ofwellness and chronic illness, such women feel compelled to perform their disability and/orchronic illness, even within their own households, to ensure that the voyeurism of neighboursdoes not result in them being reported as disabled welfare fraudsters. These internalised feelingsof shame and self-disgust, as Reeve (2014) documents, are inescapable even in the privacy oftheir own homes. Awaiting the arrival of mail containing new assessment details for a disabilityreassessment engenders internalised suffering that is socially generated. Internalised negotiationsof anxiety, fear and shame are coupled with deeply held fears for one’s future, economicsecurity, and the removal of any form of hope to live well. Thus, the structural interplay ofneoliberal biopolitics is deeply felt by the vulnerable disabled subject, and those susceptible tobeing invalidated as only a ‘partially disabled person’ (see Morgan 2017).

Tyler’s critical insights into the cultural politics of neoliberal classificatory logic is of criticalrelevance to the field of disability studies and its implications for the affective politics of disabledpeople’s everyday lifeworlds under neoliberal population management. A burgeoning body ofwork, including that of Roulstone and Morgan (2014), Soldatic and Morgan (2017) andHughes (2015, 2017), is engaging in such critiques. As these scholars identify, disabled peopleare experiencing new forms of invalidation and stigmatisation, core generative structures thatwound disabled people, their bodies, minds and souls. While some may represent a level ofcontinuity with past discourses of the un/deserving disabled subject (ibid. 2017), as RobertMcRuer (2018) suggests neoliberal affective politics have targeted disabled people particularlyhard. Disability writers such as Peter Beresford (2016) refer to this process as poverty porn,whereby poor, disabled people and their personal narratives of severe economic insecurity withneoliberal welfare state retraction, are extracted for their surplus value for entertainment firmsand production chains. While their value as human subjects is actively invalidated, thisinvalidation generates surplus value for those private firms, media outlets and mobile policyelites, through the exploitation of the partially disabled person’s poverty and abjection (Tyler2015).

Partiality and neoliberal classificatory assessment regimes

Classificatory logic of assessment technology acts as a form of validation for those who aredeemed sufficiently disabled to be deserving of disability redistributive welfare payments andsimultaneously as invalidation for those do not cohere to the neoliberal assessment logic ofwho is ‘disabled’. Thus, the claim for disability is a site of struggle for recognition and redis-tributive justice, revealing the bivalent structure of the disability identity under state systemsof population management (see Mladenov 2018 for a full discussion of Fraser’s (1995, 2007,2013) theoretical application to disability justice claims). Grover and Piggott (2010) haveargued that neoliberal classificatory systems are not systems of disability recognition, but aresystems that seek to define one’s workability through extensive administrative regimes oftesting and measurement. The focus on the assessment process to determine eligibility todisability entitlements is henceforth determined by a measured inability to work. Thisregime, as Grover and Piggott argue, is a form of social sorting whereby disabled people aresifted through a raft of highly specified testing regimes with the aim of identifying thepossibility, and the potentiality, of their workability.

Procedurally, this system of social sorting is an assessment regime in and of itself. It requiresa high level of work on behalf of the individual disabled applicant, and, increasingly, thework of others such as family members, extended networks, and advocates to support


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disabled people to work through each procedural stage of assessment, information and testing(Soldatic and Fitts forthcoming). Each stage incorporates highly prescribed information flows,differing assessment techniques, temporal markers of potential curative interventions toincrease one’s workability at some time in the future, such as the demonstration of length ofcondition and treatment undertaken thus far, alongside high volumes of medical evidenceand reports (ibid.). Navigating the procedural flows of this classificatory logos is a test ofworkability, alongside the workability of disabled people’s support base. The proceduralprocess is thus designed to test one’s capacity to work in a highly precarious flexible labourmarket, in which part-time casual work has increasingly become the norm.

This is best exemplified by the case of Australia and its system of sorting out the workabled, the partially work abled, and the non-work disabled person. Applicants must navigatea set of competing temporal requirements at each procedural stage. This involves appoint-ments at a range of welfare and private health providers to undergo the prescribed eligibilityassessment process. Additionally, disabled applicants are required to gather and build thesubstantive evidentiary base to elucidate their (non/partial) inability to work rather than theirdisability over at least a two-year period. As noted by Soldatic and Fitts (forthcoming), thecombined effects cause greater levels of disability inequality and economic insecurity. Whileundergoing this assessment regime, applicants are required to be highly mobile in order toattend multiple appointments. At this time, the disabled applicant is placed on general unem-ployment payments with substantially lower benefits and entitlements, and therefore carries thefull financial burden of public transport costs for each appointment (Soldatic 2019b). Atten-dance at medical appointments to build the substantive evidence base in addition to reportingto each eligibility assessment test, is henceforth a form of extractive dispossession, wherebydisabled people bear the personal burden of these financial outlays.

Furthermore, the Australian general unemployment payments contain forms of work-based conditionality. Even those individuals applying for disability entitlements are requiredto comply. This involves applying for multiple jobs, attending regular appointments at theirprivate job search provider as and when required, and keeping a diary of their personal effortsto find a job. While some applicants seeking access to disability entitlements may be exemptfrom such conditionality, exemption is only granted for a maximum three-month period. Itcan take anything up to 12 months to be determined as eligible for disability entitlements(Australian National Audit Office 2018). These dispossessing strategies that are embedded inneoliberal classificatory regimes mean that many disabled people forego nutritious food andrestrict their use of utilities, such as electricity and water, despite their being necessary tomaintain basic standards of self-care (Soldatic 2019).

To maintain an absolute basic level of onotological security, many disabled applicants movethrough a range of poverty management landscapes to access food vouchers, housing supportand advocacy assistance (Spurway and Soldatic 2016). The effort required to continue theapplication process is exhausting and as a result many disabled applicants decide to discontinuethe process and opt themselves ‘out of the system’ (Soldatic and Fitts forthcoming). Disabilitypoverty management mobilities are also racialised and spatialised, as the mobility of racialiseddisabled subjectivities, such as Indigenous Australians, are particularly disadvantaged throughWestern administrative systems that medicalise cultural and sociolinguistic practices as a form ofracial invalidation (Fitts and Soldatic 2018). For members of Indigenous communities livingwith disability, neoliberal disability assessment regimes are a continuum of colonisation and thebiopolitics of medicine in controlling colonised subjects.

Neoliberal assessment regimes of social sorting are biopolitical practices of social sufferingvia the ensuing strategies of dispossession slowly accumulated across disability populations –


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dispossessing disabled people of their time, scant resources and their sense of self-worth andvalue. Grover (2018) has referred to this as a form of social murder, to capture both sides ofthe spectrum of neoliberal disability workability assessment regimes for disabled people. First,the real effects of social suffering marked onto the bodies, minds and souls of the partiallydisabled subject with each negotiated movement across the procedural assessment regime.And second, the social suffering of being precluded from disability entitlements with theonset of neoliberal classificatory assessment regimes as punishment for being only partiallydisabled.

Writers such as Tyler (2015) and Wacquant (2008) argue that these neoliberal technologies ofpoverty classificatory governance and management are reflective of the broader poverty politicsof disposability. Arundhati Roy (2019) also reinforces such imaginings, whereby poor, unem-ployed persons classified as not worthy of state redistributive measures are surplus to require-ments. Yet the administrative management of these so-called populations generates surplus valuefor large transnational corporations. Atos, the French company responsible for classifying dis-abled people into categories of workability, had a £400 million contract with the UK gov-ernment to implement the current validating device known as the Work CapabilityAssessment (Braye 2017). In Australia, each stage of the classificatory procedure is outsourcedto various private firms and health management corporations. While the Australian govern-ment expenditure on disability payments amounted to A$16.3 billion in 2016–2017, anestimated A$1.5 billion lower than projected expenditure for the same period, a significantlevel of this public expenditure was transferred to private firms using medical doctors andallied health professionals to administer stringent new assessment criteria (ParliamentaryBudget Office 2018: 7, 25).

Thus, while popular narrative and neoliberal analysis suggests that the partially disabled sub-ject is surplus to both the disability category and the authoritarian demands of the neoliberallabour market, this class of disabled people generates significant surplus value for privateassessment firms and welfare to work services that are contracted to govern partially disabledpeople’s everyday existence and behaviours. These classificatory systems of neoliberal biopoliticsare interwoven with significant power, ensuring that the partially disabled subject complieswith general unemployment conditionality, moving in cycles across poverty managementlandscapes. Partially disabled subjects’ status of surplusisity is henceforth more nuanced than abiopolitics of total disposability (see, for example, Tyler (2015)). It is a contradictory position-ality – appearing as surplus to the labour market – yet this very status is generative of surplusexploitative value through the privatisation of neoliberal welfare governance, namely, what Icall, surplusisity.

Contesting partiality and stigmatisation

Tyler (2015) citing the ethnographic work of Skeggs (2011) on working-class communitiesand their practices of collective valorisation as a tactic against neoliberalisation suggests thatcollective mobilisation is the struggle against classification itself. The disability movement hasactively engaged in a series of actions against their dispossession with neoliberal classificatorylogic and procedural regimes of social sorting. Contentious tactics, such as the widespreadstreet protests of Disabled People Against the Cuts (Lisney 2019) alongside the 2012 Paral-ympic protests against the French company Atos (Braye 2017), represent two such disabilitymovement mobilisations. Disabled people have garnered their efforts in movement mobili-sation in the struggle against classification, and the dispossessing biopolitics that this entails(ibid.). Their campaigns articulate their personalised experiences of everyday forms of social


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suffering via a protest narrative to reclaim the biopolitics of invalidation (Soldatic andChapman 2010).

Such collective actions have had some resounding effects. In 2016 the UK disabled peo-ple’s movement was successful in mobilising actions to win formal recognition of the impactof neoliberal restructuring on disabled people’s lives. The UN Special Rapporteur on theRights of Persons with Disability documented extensively the level of social sufferingexperienced by disabled people following the retraction of disability entitlements owing tothe onset of austerity (Aguilar 2016). This has been followed by further global action,and the inclusion of disabled people in core international governing systems, such as theSustainable Development Goals (UN Department of Economic and Social Affairs 2018),alongside the proliferation of disability interventions across the global human rights systemsuch as the UN Permanent Forum on Indigenous Issues (Gurung 2019). Thus, despite theclassificatory struggles against neoliberal invalidation, and disabled people’s commodificationas output units of contractual outcomes, such as the Atos £400 million publicly fundedcontract, the global collective contestation against disability neoliberal classification has madesignificant advances.

Skeggs (2011) illustrates the strategic orientations of working-class actions, tactics andstrategies to maintain not only a positionality of validation, but also that of socioculturalembodied practices of solidarity. However, collective contestation and strategic orientationsagainst neoliberal invalidation, as Sayer (2005) argues, are not necessarily reflective of theoften improbability of individualised and personalised contestation. The enactment of col-lective struggles for sociopolitical valorisation under neoliberal regimes may also provide anillusionary possibility of personalised resistance given neoliberalism’s authoritarian power.Collective imaginings of capability and capacities, as narratives of personal contestation, canalso be harnessed to further disabled people’s dispossession.

Writers such as Fraser (2013) clearly argue that the struggle for justice intimates a poten-tially contradictory practice, whereby the claim for recognition may undermine the claim fordistributive justice. The biopolitics of neoliberal classificatory logic is marked by this verystruggle for disabled people. A growing body of grounded empirical research suggests thatdisabled people’s personalised narratives of their capacities and capabilities is increasingly usedby neoliberal states to invalidate their claims to disability redistributive systems of welfaregovernance (See Soldatic and Fitts forthcoming). The empirical landscape suggests that dis-abled people who are at risk of being classified as only partially disabled are those who engagein counter-political narratives of invalidation with personalised narratives of their capacities –what they can ‘do’, who they ‘are’, the value they ‘hold’ as a person, and what they can ‘be’.These personalised narratives practised by disabled people seek to dispel the internalisedsubjectification and the socio-emotional disablism of the public imaginary of the disabledwelfare scrounger that dominates neoliberal discursive positioning of the disabled subject (seeRoulstone and Morgan 2014).

Yet such discourses within the intimate sphere of the assessment, ‘undo’ disabled people’spersonal claims for disability distributive entitlements. First, attending the assessment is con-tradictory itself – it demonstrates a capacity to follow schedules, to be mobile, and to seethrough to completion an externally directed task. The assessment space also presents thedisabled applicant with the opportunity to express their desires, hopes and possibilities of afuture life, one not shrouded in pity, but accessing resources to facilitate a personal level offlourishing. Being afforded an assessment thus appears as an act of recognition. The disabledapplicant has been given some form of acknowledgement of the social suffering they haveexperienced as a non-recognised disabled person. And that this acknowledgement is a


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social imagining of the potentiality of the disabled person, their potential flourishing, andparity of participation, through the redistributive systems of cash transfers and social sup-ports. The disabled applicant represents the materiality of struggle for distributive justice, andyet, contradictorily, in the age of neoliberalism, the very act of misrecognition. The claimingof one’s human capacities and capabilities with the intimacy demanded of the assessmentregime, is more likely to render their claims for redistribution as unworthy and unjustified.

Collective narratives of disabled people’s value in the struggle against classification arecoopted within the highly personalised struggle to illustrate one’s value within the private spaceof the medical assessment. Iterating what one can do works in line with neoliberal classificatorylogic. The performativity of capability and capacity seeks individualised validation for one’spersonhood in its full status of the law yet simultaneously undermines one’s claim for redis-tributive justice within the neoliberal political economy as it seeks to put disabled people towork. Indeed, as noted by activists engaged in struggles against neoliberalism, the disabilitystruggle has to show what one cannot do without the redistributive power of the state giventhe disabling conditionality of a neoliberal political economy as it operates co-jointly with thehegemon of ableism (Lisney 2019).

Conclusion

Writers such as Arundhati Roy (2004) argue that there is an ordinariness to everydayforms of social suffering, administered under complex webs of global political power, and itsreconstitution with neoliberalism’s ubiquitous mobility. This everyday ordinariness, whiletypically situated as a southern narrative, provides a platform upon which to interrogate thegeneral conditionality with the emergence of neoliberalism as a global political hegemon. Fora large proportion of the disabled population, the ordinariness of neoliberalism is experiencedthrough disabled people’s everyday embodied lives and their daily navigations of disabilitydistributive systems of cash transfers, supports and services.

As French and Swain (2008) contend, the neoliberal and the disabled people’s movement’sclaims to the right to work, however, have disparate aims for disabled people. Disabled peopleseek the right to work as a form of redistributive justice and to put an end to disabled peo-ple’s ongoing exclusion from the labour market and the resultant effects of entrenched pov-erty, precarity and exclusion. Neoliberalism’s aim of putting disabled people to work, asGrover and Piggott (2010) argue, seeks to harness disabled people’s labour power as membersof the reserve army of labour – economic exploitation as a duty of citizenship (Schram et al.2008). With neoliberalism’s cooption of disabled people’s struggle for economic parity andinclusion, the experience of inequality, poverty and marginalisation appears to becoming ageneral conditionality of the global mobility of neoliberalism’s power.

As this chapter illustrates, the disabled people who have been most affected by the neoliberalage are those who are no longer deemed to be ‘fully’ disabled by the neoliberal state. This is notto suggest that their bodies and minds have changed. The onset of neoliberal classificatory logicnow means that there is a growing class of disabled people who are no longer recognised asbelonging fully to the class of disabled persons. They are seen as ‘partially’ disabled. This growingcategory under the neoliberal biopolitics of classificatory logic means that they are not only mis-recognised as ‘partially disabled persons’ but co-jointly they are not able to make redistributiveclaims on the state for disability redistributive systems involving cash payments, social services andsupport. With the removal of their legal status as disabled persons under state redistributivesystems, they experience, as illustrated in this chapter, severe levels of social suffering.


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Acknowledgements

This work from this chapter emerges from Karen Soldatic’s Australian Research CouncilDiscovery Early Career Research Fellowship (2016–2019).

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18

DISABLED PEOPLE ANDEMPLOYMENT

A UK perspective

Rosa Morris

Introduction

The social model approach, which has been at the heart of both disabled people’s activismand that of disability studies, recognises that disabling barriers are experienced across manydifferent aspects of a person’s life and opportunities. Yet to a large extent, in the context ofcontemporary capitalism, ‘Disability itself has come to mean “unable to work”’ (Finkelstein1991: 8) and Oliver argues that ‘exclusion from the world of work is the most importantfactor in what happens to us and the way we are treated by society’ (1999: 7). There aredebates about why this exclusion occurs, with some arguing that it stems from the verynature of the economic system which dominates the global economy (see, for example,Oliver 1999; Russell and Malhotra 2002 Gleeson 1997) and others arguing that it has moreto do with a culture which views disabled people as ‘the other’ (e.g. Armer 2004). However,what both these approaches agree on is that exclusion from the labour market is a centralsource of discrimination and oppression; it has a fundamental role to play in the concept ofcitizenship (Abberley 1999); and is key to maintaining the link between disability andpoverty (Roulstone 2012).

In the United Kingdom, official statistics indicate that around half of all disabled people arein employment (Brown and Powell 2018), with around 2.3 million people receiving out ofwork disability benefits (Department for Work and Pensions 2018: 6). This means thatpolicies aimed at improving disabled people’s employment rates and those related to deter-mining who should be considered exempt from seeking employment have a significantimpact on disabled people’s lives. The government’s need to determine who should be eli-gible for assistance and exempt from waged labour gives rise to what Stone calls a ‘validatingdevice’, i.e. a mechanism which assesses whether a person is ‘fit’ to work and confers a socialidentity of ‘deserving’ support within what she calls the ‘needs-based distribution system’ asopposed to the ‘work-based system’ (1984). Although this chapter is not directly concernedwith the operation of the validating device, the changes in disabled people’s patterns ofemployment and associated government policies which are discussed below took placealongside a series of changes in the way that exemption from waged labour is determined. In

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effect, the way that disability is officially recognised has, since the 1990s, ‘undergone a processof “reclassification” to restrict access to it to a newly defined “truly” disabled group ofpeople’ (Grover and Soldatic 2013: 217). Moreover, the operation of the current validatingdevice, the Work Capability Assessment, has been a key site of struggle against oppression fordisabled people since its introduction in 2008 and has, in particular, brought the experiencesof people with long-term health conditions to the fore (see, for example, Hale 2014; We areSpartacus 2012, 2013).

The reclassification of who is ‘deserving’ and who should be exempt from employmenthas also prompted discussions within disability studies as to the extent to which disabledpeople are or can be part of the reserve army of labour. This concept was developed by Marx(1867) to explain the role of those people who, while not currently in employment, providea pool of potential labour when the economy requires them and who play a crucial role incontrolling wage inflation and maximising capital accumulation. This is paramount to thefunctioning of capitalism and ‘much of contemporary social policy has to be understood asfacilitating this process’ (Byrne 1997: 27). Governments’ concerns with the levels ofemployment and unemployment among disabled people, and how to respond to economicinactivity, are, it is argued, closely linked to the varying demands for labour (Grover andPiggott 2005).

There has been some questioning of the validity of using the concept of a reserve army oflabour in analyses of disabled people’s employment (see Roulstone 2012) given that manydisabled people are in employment and, as Bambra argues, the reserve army is ‘highly strati-fied by socio-economic class and local labour market conditions’ and therefore ‘the idea thatall of the long-term sick and disabled … constitute a “reserve army of labour” is problematic’(2011: 156). However, while all disabled people may not be members of the reserve army oflabour – and disability and impairment are not a homogenous experience – changes in bothlabour market and welfare policies ‘can be interpreted as attempting to construct disabilitybenefit recipients as part of the reserve army of labour’ (Grover and Piggott 2005: 714).Unfortunately, as these policies have developed over the past decade and it has becomeharder for people to access out of work support, disability activists have often had to focusmore on ensuring that people have an income that allows them to survive, rather thanmaking the case for a more inclusive society.

This chapter will examine disabled people’s position in the labour market and howemployment opportunities are being influenced by changes in the nature of work, beforegoing on to look at how effective governments’ policies aimed at increasing employmentrates among disabled people have been.

Disabled people in the labour market

Statistics on disabled people’s employment in the UK have been contested and are difficult tocompare over time (Baumberg et al. 2015). According to government statistics, in the firstquarter of 2019 51.7 per cent of disabled people were in employment, compared to 81.7 percent of non-disabled people, and disabled people were more than twice as likely as non-disabled people to be unemployed (Powell 2019). This employment gap of 30 per centobscures significant variations according to impairment, with the gap being substantiallyhigher for those experiencing mental illness or learning disabilities in comparison with thosewith conditions such as diabetes or sensory impairments (TUC 2018). Disabled people whoare in employment are more likely to be in low-paid work and there is an average pay gapbetween disabled and non-disabled workers of 15 per cent (ibid).

Disabled people and employment in the UK

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A number of factors can be identified which help to explain disabled people’s experiencesin terms of their employment status. These factors fall into three main categories: variations inthe demand for labour; the ability of employers to ‘hire and fire’; and changes in the workingenvironment.

‘Hidden unemployment’ or ‘hidden sickness’?

More than 20 years after the major job losses which occurred in the 1980s as a result of thedecline in traditional industries such as mining, steel-making and ship building, the areaswhere these industries were concentrated continued to experience high levels of economicinactivity (Riddell et al. 2010: 18). This regional concentration was identified by somecommentators and politicians as ‘hidden unemployment’ and became an important justifica-tion for repeated attempts to reform out of work disability benefits (Beatty and Fothergill1994; House of Commons Work and Pensions Committee 2003). The greater risk of eco-nomic inactivity among men in their 50s and early 60s in these areas also prompted some toargue that the incapacity benefit system, combined with occupational pension arrangementsin the event of ill health, provided a ‘disability route’ into early retirement (Blundel et al.2002). However, evidence suggests that there was and is a high correlation between poorhealth, mortality and receipt of out of work disability benefits (Bambra and Smith 2010;Kemp and Davidson 2010) and it has been argued that, far from sickness benefit claims beingdisguised or hidden unemployment, it is ill health among people in employment that ishidden and unacknowledged (Minton et al. 2012).

Disabled people would therefore seem to have borne the main brunt of high unemploymentrates in areas of economic decline and stagnation (Berthoud 2011). Employers’ incentives tomake adjustments for disabled workers – in order to recruit the labour they require – are likelyto be an important factor in the continuing regional variations in levels of employment amongdisabled people (Brown and Powell 2018). Where employers have a large pool of labour todraw on, they have little incentive to make adjustments to workplaces or working conditionsin order to accommodate people with impairments or long-term health conditions. In contrast,in areas where there is a surplus of jobs, it is easier for disabled people to find employmentbecause employers in these areas are more likely to make adjustments to accommodate theirhealth problems and/or barriers associated with impairment as they have fewer workers tochoose between (Kemp and Davidson 2010).

Beatty et al. (2000) argue that there is a level of ill health among the employed workforcewhich only gets recognised once someone loses their job and then enter the benefits systembecause they meet the eligibility criteria for out of work disability benefits. Subsequentresearch tends to support the view that it was and remains the economy that drives the highlevels of claims in those parts of the country where many jobs were lost during the 1980s,and far from disability benefits being used to hide levels of unemployment, the greaternumber of job opportunities in other areas of the economy are masking levels of sickness anddisability in those areas (Lindsay et al. 2015: 7–8). A convincing argument can therefore bemade that variations in the demand for labour are a significant factor in determining disabledpeople’s experiences of employment and unemployment.

The impact of a ‘flexible’ labour market

Also of significance for disabled people’s experiences of employment is governments’ imple-mentation of policies aimed at promoting a ‘flexible’ labour market – a term which generally


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refers to the ease with which workers can be hired and fired. From the 1980s onwards leg-islation reduced employment protection, thus making it easier for employers to fire workers.Collective bargaining reduced significantly during the 1980s and trade union membershipdeclined, partly as a result of the growth of usually non-unionised temporary and part-timeemployment (Towers 1989), which also brought with it a reduction in entitlement to sickpay, all of which increased job insecurity. This period also witnessed a large increase in thenumber of people receiving out of work disability benefits, and research at the time indicatedthat the explanation ‘lies in the economy as a whole, and in the hiring and firing practices ofemployers, rather than in a change in the behaviour of individual claimants or their doctors’(Strickland 1994: 6).

Despite implementation of anti-disability discrimination in 1995, legislative and policychanges promoting labour market flexibility arguably made it less likely that employerswould accommodate people’s requirements related to ill health or impairment. Aggressiveperformance and absence management policies have been developed in most sections of theeconomy over the last 30 years, with a trend starting in the 1990s when, as concluded in areview of research, employers had become ‘less accommodating towards employees who maycontribute less to productivity than others’ (Meadows 1996). A comprehensive analysis ofdisabled people’s position in the labour market from 1980 to 2010 concluded that ‘whileemployers have become more willing to recruit from the large pool of well-qualifiedwomen, they have become less motivated to hire or retain people who combine ill-healthwith low skill levels’ (Berthoud 2011: 52).

Changes in the occupational structure

There is a convincing case to be made that it is not just the ease with which employers canhire and fire, but also changes in the occupational structure which have made it harder fordisabled people to compete in the labour market.

Over the past 30 years education and skills have become more important if people are tosell their labour as ‘new jobs have been created in large numbers in high-skill, high-wageprofessional and managerial occupations’ (Sissons 2011: 4). Labour Force Survey data overmany years has shown that disabled people are under-represented in these types of occupa-tions. The increasing importance of skills and qualifications is illustrated by the fact that,whereas in the mid-1970s more than three-quarters of disabled people with no qualificationswere in employment, by 2003 this had declined to one-third (Riddell et al. 2010). The ‘skillsgap’ for disabled people has narrowed slightly over the last 20 years but it is still the case thatonly 15 per cent of disabled people have a degree, compared with around 30 per cent ofnon-disabled people and more than one-fifth of disabled people have no qualifications, twiceas many as non-disabled people (Tinson et al. 2016: 29). However, other factors, such asemployer behaviour and the nature of work, appear to be more important than skills oreducation because at every level of qualification a disabled person is much more likely than anon-disabled person to be unemployed (Palmer 2010).

The occupations in which disabled people are over-represented have experienced a declinein recent years and are expected to decline further (Scope 2014: 16–17). This is becausechanges in the occupational structure of the labour market mean that it is becoming ‘hollowedout’, i.e. polarised between secure, highly skilled and paid jobs and casual, low-paidemployment (see, for example, Walker and Wiseman 2003; McIntosh 2013).

While this appears to have been going on since the 1980s (Goos and Manning 2007),technological developments have increased the computerisation of middle-ranking jobs in


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more recent years. Three-quarters of jobs created in the first decade of the 21st century wereat the ‘top end’ of the occupational and wage distribution – in the managerial, professionaland technical occupations – while the number of low-paid, insecure jobs on offer alsoincreased (Sissons 2011) but middle-ranking jobs declined. The evidence shows that since therecession that followed the 2007/2008 financial crisis this trend has increased (Plunkett andPessoa 2013).

The decline of public sector employment has also had a disproportionate impact on dis-abled people as they are more likely to find employment in the public sector rather than inthe private sector. The only occupations where disabled people are over-represented andwhere job opportunities are increasing is in service, sales and elementary occupations (Scope2014: 8). However, these occupations are also seeing changes in working conditions whichimpact on disabled people’s ability to obtain and remain in employment.

Changes in working conditions

Drawing on feminist critiques of the way job design and workplace cultures disadvantagefemale workers, Foster and Wass argue that jobs are organised on ideas of what constitutes atypical worker and the assumption that this is a (male) worker with no impairment or healthcondition is ‘deeply embedded in the practices, policies and culture of organisational life’(2012: 16). In consequence, ‘the worker with an impairment is … effectively disabled as aconsequence of dominant organisational ideas’ (ibid.: 709, emphasis in the original). Thereare also specific factors relating to changes in the nature of work over the past few decadeswhich increasingly act as important barriers to disabled people’s employment.

For people who in employment are the ‘hidden sick’ the ability, and the willingness oftheir employers, to fit their work around their requirements related to their state of health iscrucial. However, the UK has ‘seen a sharp rise in high-demand, low-control jobs’ (Baum-berg 2014: 290) and although the decline in manufacturing brought about a decrease in thephysicality of jobs, a nationwide survey carried out in the late 1990s found that 60 per centof employees had experienced an increase in the pace of work and the effort they had to putinto their jobs (Burchell et al. 1999).

The extent to which workers can control the pace of their work and their working envir-onment in general is important as having that control can enable a person to fit the require-ments of a health condition or impairment around their job. However, according to theOrganisation for Economic Co-operation and Development (OECD), Britain is unusual inexperiencing a rapid decline in job control (Baumberg 2014: 293). This combined increase inwork effort and decrease in control makes it even more likely that jobs will be designed for the‘ideal’ non-impaired worker, with no ongoing health problems which, as Foster and Wassidentified, create disabling barriers to employment and particularly for employment sustainedover a long period of time. Baumberg’s analysis concluded that ‘one sixth fewer people in 2006would move from work to incapacity benefits if job control had not deteriorated since 1992’(2014: 299). Such working conditions also make it harder for employers to envisage thatadjustments could be made to enable a disabled person to carry out job-related tasks, somethingwhich Foster and Wass found was apparent when examining the processes and outcomes ofEmployment Tribunals involving disabled people (2012: 712–713).

Not only are more jobs now characterised by low control, but many occupations requirecharacteristics which create barriers for particular groups of disabled people. Whereas indus-trialisation created a working environment in which ‘people’s bodies were increasinglyvalued for their ability to function like machines’ (Russell and Malhotra 2002: 213), it could


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be argued that the shift to a service-driven economy has created a requirement for individuals’minds to ‘function like machines’. This may help to explain the fact that only about 14.8 percent of all people with learning disabilities (TUC 2018: 3) and only one in four of people witha long-term mental health condition are in paid employment (TUC 2017). People with mentalhealth conditions are also more likely find the increase in the requirement for workers topossess resilience and social skills (Deming 2015) and to maintain the relentless ‘positivity’required by ‘customer-facing’ employees (Biggs 2015) particularly challenging. This may helpto explain why about 300,000 people with mental health conditions lose their jobs each year(Stevenson and Farmer 2017: 19) and why over time mental health conditions have becomethe most common cause of benefit entitlement, with the number of claimants rising by 103 percent from 1995 to 2014 (making up 47 per cent of claims), whereas the number of claimantswith other conditions fell by 35 per cent (Viola and Moncrieff 2016).

Work is good for your health

It is commonly argued that unemployment is bad for people’s health and that work is ben-eficial. Recent government policy (Department for Work and Pensions/Department ofHealth 2016, 2017) contends that work is a ‘health outcome’, drawing on a review of workand health carried out in 2006, which has been referred to by a succession of governmentministers. However, that review also concluded that, while unemployment was associatedwith poor health, in order for employment to benefit health ‘account must be taken of thesocial context, the nature and quality of work, and the fact that a minority of people mayexperience contrary effects. Jobs should be safe and should also be accommodating for sicknessand disability’ (Waddell and Burton 2006:, 38).

The review also found that most people who stop drawing out of work disability benefits gointo low-paid, poor quality and insecure jobs and find it difficult to sustain employment. Jobinsecurity – which has increased in both manual and non-manual occupations since the 1970s(Burchell et al. 1999) – is correlated with deteriorating physical and mental health with someresearch concluding that ‘job insecurity is associated with a doubling of the risk of commonmental disorder’ (Weinberg and Doyle 2017: 6). Other more common characteristics of themodern workplace, identified above, are also associated with mental health difficulties:increased work effort is correlated with high levels of depression and ‘The level of control thatan individual has over their work is a key factor for psychological health’ (ibid.).

In summary, the tighter labour market in the UK in recent years (as represented by thedecrease in the general unemployment rate and the increase in the number of peopleemployed) has not led to a significant narrowing of the disability employment gap. While avery low rate of unemployment has meant that some disabled people have been able to moveinto the labour market, analyses of Labour Force Survey data for 2016/2017 found that forevery 100 disabled people moving into work 114 left, whereas for every 100 non-disabledpeople moving into work 97 left (Scope 2017), that ‘disabled people are twice as likely to fallout-of-work as non-disabled people’ and ‘are approximately 3 times less likely to move intowork than non-disabled people’ (Department for Work and Pensions/Department of Health2017: 82).

As the above discussion shows, there are many barriers and challenges in the current UKlabour market when it comes to increasing the overall employment rate of disabled people, aproblem which is heightened among certain impairment groups. Over time a number ofdifferent policies have sought to increase disabled people’s inclusion in the labour market, andthese are examined in the next section.


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Tackling employment exclusion

The last two decades have witnessed a series of attempts by governments to tackle the dis-ability employment gap by making disabled people more ‘employable’. While the earlierstages of the welfare state saw a general acceptance of the state’s responsibility towards somedisabled people’s employment in the form of the quota system, sheltered employment andrehabilitation services for people with acquired physical impairments (Barnes and Mercer2005), from the 1990s onwards there was an increasing focus on policies intended to make‘the individual competitive’ (Thornton and Lunt 1995: 35).

This meant a focus on supply-side factors such as individuals’ skills, qualifications andmotivation to work. For example, the Labour party’s 1998 White Paper saw the problem asthe failure of disabled people and other long-term unemployed groups to exhibit character-istics required by the ‘flexible labour market’ (Department for Social Security 1998). Thisarguably frames disabled people’s unemployment as an issue ‘of dependency which the faultyindividual on welfare must overcome, not as the structural outcome of an exclusionarymarket’ (Russell and Malhotra 2002: 220). Instead of addressing the exclusionary labourmarket, governments have repeatedly attempted to narrow the criteria that determine who iseligible for out of work disability benefits – supposedly ‘to distinguish those who can’t workfrom those who won’t’ (Waddell and Aylward 2005: 9) – in an attempt to push more disabledpeople into work.

This initiative has been accompanied by a series of welfare-to-work programmes aimed tobring people ‘closer to the labour market’. The New Deal for Disabled People was followedby Pathways to Work, which in turn was replaced by the Work Programme and WorkChoice and these have now been replaced by the Health and Work Programme. These pro-grammes have all been characterised by attempts to increase disabled people’s ‘employ-ability’ and have sought to change ‘attitudes’ towards work and benefits. Each has claimedto ‘personalise’ support by using a variety of mechanisms and there has also been anincrease in ‘conditionality’ which takes the form of removing benefits for a period of timeif the claimant fails to fulfil the obligations required of them.

Evaluations over the last 20 years of all these programmes have reached similar conclusions.They have all tended to work with the more ‘work ready’ participants (Stafford et al. 2004;Riddell et al. 2010; Centre for Economic and Social Inclusion 2015) and there has generallybeen a low rate of achieving sustained employment for disabled people, particularly thosewho have been long-term claimants on out of work disability benefits (Bewley et al. 2007;Knight et al. 2013; House of Commons Work and Pensions Committee 2016). In addition,these programmes tended to aim to get people into ‘entry level’ jobs, with many on zero-hours or short-term contracts, often working for agencies in industries which rely on out-sourcing and sub-contracting and in working environments which people with long-termhealth conditions find difficult to sustain.

All of these supply-side interventions are an inherent part of a ‘shift in economic ortho-doxy from Keynesian to neoliberalism over the past four decades’ (Grover and Soldatic 2013:224). The state ‘has actively co-opted the disability movement’s collective demands for theright to work through harnessing individual “employability”’ (Soldatic and Meekosha 2012:197) and governments’ policies aimed at tackling the disability employment gap have all beenunderpinned by the neoliberal assumption that people are ‘rational actors’ who will act out ofself-interest; that what a person is capable of doing ‘will always depend on effort and moti-vation’ (Waddell and Aylward 2005: 9); and that benefits and employment support systemsmust therefore provide incentives to get people back to work.


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A couple of policy areas have the potential to take a more demand-side approach and areaimed at addressing the barriers that people face, rather than viewing the ‘problem’ as beinglocated within the individual and therefore it is the individual that needs to be ‘fixed’. Oneof these is anti-discrimination legislation via the Disability Discrimination Act, which disabledpeople have spent a long time fighting for. However, it relies on the individual to bring acase, requiring them to demonstrate that their impairment defines them as ‘disabled’ withinthe terms of the Act, rather than focusing on disabling barriers (Thornton and Lunt 1995;Barnes 1999). Any ‘adjustment’ that the employer is expected to make must be ‘reasonable’and take into account the financial implications, meaning, as Russell argues, that ‘The dis-abled person’s theoretical right to an accommodation is really no right at all; it is dependentupon the employer’s calculus’ (2001: 90). In recent years, the efficacy of anti-discriminationlegislation has been called into question even more by the reduction in access to legal aid andthe increased fees for Employment Tribunals (Anthony and Crilly 2015).

Another potential demand-side policy is Access to Work, which provides grants towardsadjustments, equipment and support to address the barriers faced by individuals. A review in 2010of different types of employment support concluded that Access to Work was particularlysuccessful at enabling disabled people to gain and retain employment (Sayce 2011). The reviewrecommended doubling the number of people helped by this programme, but instead thenumbers fell. An improvement in funding in the 2015 Spending Review saw the numbers beginto rise again. At the same time, changes have been made with regard to eligibility which havebeen widely criticised (Hale 2015), particularly the changes made to the contracting of BritishSign Language interpreters which are said to be undermining the availability of the service Deafpeople need in order to work (National Union of British Sign Language Interpreters 2017).

Where are we now?

For over 20 years, attempts to increase employment among disabled people have all beenaccompanied by the message that ‘work is the best route out of poverty for disabled people,as well as for others of working age’ (Education and Employment Committee 1999: 175)despite the fact that in-work poverty has increased to the extent that one in eight workers arenow living in poverty (Robb 2018). ‘Personalised conditionality’ (Department for Work andPensions, 2008: 15) – the withdrawal of benefits if a claimant does not comply with condi-tions intended to make them ‘job ready’ and seeking employment – is similarly justified bythe belief that people need to be incentivised to move on from the ‘sickness benefit culture’(Duncan Smith 2015). The most recent ‘incentive’ is the reduction of the benefit paid tothose in the Work-Related Activity Group of the current out of work disability benefit,Employment and Support Allowance (ESA), to the same level of Job Seekers’ Allowance – areduction of £30 per week. This, says the Department for Work and Pensions (DWP), will‘remove the financial incentives that would otherwise discourage claimants from taking stepsback to work’ (2015: 1).

Recent evidence seems to suggest that ‘personalised conditionality’ in the form of sanctions isno more successful than previous approaches to increasing employment and that they exacerbateill health and impairments (Welfare Conditionality Project 2018). The Behavioural InsightsUnit – whose previous work had heavily influenced the introduction of conditionality andsanctions – also concluded that sanctions were not actually achieving the intended outcome ofincreasing entry into employment (Gandy et al. 2016). Instead of acting as an ‘incentive’ theyonly create financial crises for already poor households, increase the use of food banks and therisk of people becoming ‘disconnected’ from the welfare system altogether (Loopstra et al. 2018).


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The latest stage in the state’s attempts to move more disabled people into employment wasrolled out nationally at the beginning of 2018 (Department for Work and Pensions/Depart-ment of Health 2016, 2017). A commitment to get one million disabled people into workover the next ten years was made, with the main vehicle for doing this to be a new Healthand Work Programme. This replaces both the Work Programme and Work Choice, albeitwith only 25 per cent of the funding previously available for the two programmes replaced(Butler 2017). This programme purports to offer ‘a more personalised local approach tosupporting disabled people overcome barriers to employment targeting specialist support tothose who are likely to be able to find work within 12 months’ (Department for Work andPensions/Department of Health 2017: 54). In addition, the DWP has started to research andpilot ‘voluntary’ programmes aimed at people in the ESA Support Group. It remains to beseen whether these changes to employment support will be any more successful than theprevious programmes at enabling disabled people to get into and remain in employment.

The future of work is a major topic for many politicians, economists and academics, buthow disabled people fit into this future is less clear and there has been an ongoing dis-cussion within disability studies about whether it is the very definition of work that needschallenging (see, for example, Abberley 1999; Barnes and Mercer 2005). As the evidencediscussed in this chapter makes clear, the current approaches are not working, and a sub-stantial shift is required if disabled people’s exclusion and marginalisation in employment isto be addressed.

The future of work

Twenty years ago Abberley identified that changes in the labour market would create particularproblems in terms of disabled people’s access to employment opportunities:

With accelerating technological change and the globalisation of markets, for the lessskilled future prospects of stable employment look bleak, whilst for those possessingqualifications three or four career changes in forty years do not seem unlikely. Bothof these tendencies make the prospects of inclusion in the permanent labour force,and consequent citizenship more problematic for disabled people. As technologicaladvances and increased globalisation combine to make permanent employment anincreasingly rare phenomenon for the majority of the workforce, disabled peoplewill continue to be in the forefront of those groups who cannot provide the versatilityand work rates demanded by the labour market.

(1999: 11)

In 2018 UK unemployment was at an all-time low – just under 4% – and it might have beenexpected that such a tight labour market would see significant increases in disabled people’semployment rates. Set against this, however, is the fact that changes in the labour market have, itis argued, created conditions which are increasingly difficult for disabled people to fulfil.

Changes in the occupational structure of the labour market and increases in low-paid, inse-cure, low-control, high-effort jobs have, as Abberley predicted, resulted in diminishingemployment opportunities for disabled people. Although disabled people have long argued thattechnology has the potential to facilitate inclusion and participation (e.g. UPIAS 1975), tech-nology is not neutral and its nature and possibilities are determined by the power relationswithin which it is created (Sheldon 2003). Current developments particularly in automation areaffecting the jobs in which disabled people are more likely to have been employed, and the


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emphasis on increasing productivity can make it harder for disabled people to compete. Forexample, a recent study of the employment of people with learning disabilities in Australiafound that, despite the existence of inclusive recruitment policies in a large retail organisation,their employment opportunities were being limited by the way technology was used toincrease efficiency and productivity (Moore et al. 2017). Increasing digitisation is also partlyresponsible for fuelling the increase in self-employment with none of the security and benefitsthat are particularly important for disabled people (OECD 2016).

The number of people of working age with long-term health conditions is projected toincrease significantly in the future (Bajorek et al. 2016), and the UK government hasacknowledged that ‘The prevalence of disability among people of working-age has risen inrecent years and is likely to rise further with an ageing workforce’ (Department of Work andPensions/Department of Health 2017: 5). Yet employment support programmes, with theexception of Access to Work, have focused on ‘fixing’ the individual rather than makingchanges to the working environment. Despite the insistence of consecutive governments thatthey have adopted the social model of disability, policies focus solely on an individual’sfunctional limitations in a mistaken belief ‘that people are disabled by their impairment,rather than the structures of capitalism that privilege the non-disabled over the disabled body’(Grover and Piggott 2015: 11).

The move to more insecure jobs and roles which are less likely to offer the adjustmentsrequired to enable many disabled people to work prompts a further debate that has beenongoing within disability studies for several decades, namely if work is to have any chance ofbeing inclusive there needs to be a reconfiguration of what is meant by work. Roulstonepoints to the ‘gradual historic redefinition of domestic labour as non-productive’ (2015: 267)as an example of how productivity is redefined to benefit the dominant economic system andsays that economic productivity

if interpreted broadly as adding value to communities, stimulating economic activity,aiding environmental improvements and improving a social skill set, then the array ofdirect payment employment [of personal assistants], involvement in access groups,civic contributions and unpaid voluntary work all contribute in a way that, althoughdifficult to monetise, is clearly adding value to the community, economy and widerworkforce skill set.

(Ibid.: 268)

Barnes has also made the case for all the activities that disabled people have to do in order tomanage and incorporate their impairment into their day to day lives to be viewed as work.He argues that ‘when work is organised around a different set of principles such as socialnecessity and interdependence people with impairments are included in, rather than excludedfrom, the workplace’ (2012: 477).

Shifting the emphasis away from economic productivity, by basing the concept of workon social need rather than on economic profit, would go a long way to increasing theinclusion of disabled people. Nevertheless, the premise of work, however defined, wouldremain central to meaning and value in life. This fails to acknowledge that there will alwaysbe some people who cannot contribute in this way and as Grover and Piggott argue that

there is a need for a way forward that does not simply replace economic productionwith social production as the means by which the contribution of individuals isjudged. An approach is needed that will allow for the observation that perhaps there


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are people who will, no matter how production is defined, never be as productiveas others.

(2015: 247)

It is, of course, important to recognise that about half of all disabled people are in employment(though this varies across impairment groups as discussed above), that many young disabledpeople have the same aspirations as their non-disabled peers, and that people acquiringimpairments often expect – and achieve – continued employment (Sayce 2011). Nevertheless,changes in the labour market have created significant barriers to disabled people’s employment.This is particularly true for people with chronic health conditions and it has been argued thateven if all the environmental and attitudinal barriers were addressed this would not result in allof those with long-term health conditions suddenly being able to engage in waged employ-ment (Benstead and Nock 2016). Efforts to address disabled people’s experiences of povertyand exclusion therefore need to be concerned not only with the barriers to employment andhow might they best be addressed, but also with the challenge that Abberley (1999) putforward almost 20 years ago, of how to secure the future of those who will always beexcluded from the world of work, however it is defined.

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http://www.welfareconditionality.ac.uk/

19

DISABILITY STUDIES, INCLUSIVEEDUCATION AND EXCLUSION

Michele Moore and Roger Slee

The worst of times

Many people will be familiar with the opening sentence of Charles Dickens’s novel, A Tale of

Two Cities:

It was the best of times, it was the worst of times, it was the age of wisdom, it wasthe age of foolishness, it was the epoch of belief, it was the epoch of incredulity, itwas the season of Light, it was the season of Darkness, it was the spring of hope, itwas the winter of despair, we had everything before us, we had nothing before us,we were all going direct to Heaven, we were all going direct the other way – inshort, the period was so far like the present period, that some of its noisiest authoritiesinsisted on its being received, for good or for evil, in the superlative degree ofcomparison only.

(Dickens [1859] 2007)

Perhaps Dickens’s comparison of the London and Paris of 1775 with his own world in themiddle of the nineteenth century holds. However, from the present vantage point of mar-ginalised and disadvantaged people in England, and beyond, the vista sheds little light, offersno wellspring of hope. As we reflect on the vulnerability of disabled children and theirfamilies in an age of inclusive education, we observe the simultaneous advance of nationalhuman rights legislation and international conventions on the rights of disabled people andthe systematic growth of exclusion under the liberal veneer of inclusion discourse.

In England, the unfolding of a number of factors intensifies our concern about encroachingexclusion. First was the backlash against inclusive education invited by the pronouncement byBaroness Warnock in 2005, in her pamphlet written for the Philosophy of Education Societyof Great Britain (Warnock 2005), that inclusion was a disastrous legacy of her celebrated, yetessentially conservative,1 Special Educational Needs report (ibid. 1978). Second was a declarationby the then leader of the opposition Conservative Party, David Cameron, of the importance ofthe provision of a range of educational options to entitle parents of disabled children to choice.As a parent of a disabled boy his argument was compelling and seldom deconstructed in itsreportage. Third was the fact that although the Labour Party government had endorsed the

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United Nations Convention on the Rights of Persons with Disabilities and the OptionalProtocol, it lodged its reservation on Article 24 concerning the education of people with dis-abilities. Fourth was the rapid withdrawal of the state signified by the Conservative/LiberalDemocrat coalition government from the protection of public education. The dismantling ofthe welfare state set a devastating backdrop for disabled people:

Before it announced the results of its Public Spending Review, the coalition govern-ment insisted that disabled people had no reason to fear cuts to the welfare system. Butdisability organisations have said that the cuts to benefits and local authority spendingrisk pushing disabled people further into poverty.

(Peck 2011: 1)

Richard Hawkes, the chief executive of Scope, a disabled people’s advocacy organisation,directed attention to the proposed cessation of the mobility allowance for people living inresidential care:

This assault on the most vulnerable is characterised by the callous removal of themobility component of Disability Living Allowance (DLA) for people living inresidential care, which will simply increase dependency and mean many people willliterally become prisoners in their own homes.

(Peck 2011: 1)

These factors are relatively recent events that impact on English education policy. They mustbe added to the extant context of exclusion in order to explain the foundations of our con-cerns and our call for different approaches to what has been offered as inclusive education. Atthe centre of our call is a requirement for disability studies in education as a foundation forconstructing inclusive schooling.

In this chapter we will:

� explore the foundations of educational exclusion and consider emerging patterns ofexclusion; and

� establish the case for disability studies in education as a strategy pursuant to inclusiveeducation.

Special education and the progress of collective indifference

In a gesture of exasperation Slee (2010) offered the notion of the irregular school as a counter-point to debates about whether disabled students should be educated in the segregated specialschool or in the neighbourhood regular school. As Danforth (2009) reminds us, these debatesseldom acknowledge the symbolic complexity of the questions concealed within seeminglyself-evident propositions. Benevolent humanitarianism (Tomlinson 1982) is expressed as thespecial needs of students with impairments who are at risk in the regular school. In order to doour best for these ‘needy’ children a choice from a range of special schools, units, centres andclassrooms is reaffirmed (Farrell 2006). Segregated special schooling, together with the range ofso-called choices for the placement of disabled children, is a symbol of both the intransigenceof the fortressed regular school and a measure of the simultaneous professional interest anddisinterest in children who are a risk to a school’s performance on national examinationresults-driven league tables. Let us explain this proposition. First, there is an intensification

Inclusive education and exclusion

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of a long-standing anxiety about the way in which students with poor academic prognosesrepresent a threat to the rating and ranking of schools (Slee 1998; Gillborn and Youdell2000; Ball 2008). Responding to the challenge of improving results, schools have looked atways of jettisoning difficult and hard-to-teach children. Second, and conveniently, therehas been a steady expansion of categories of diagnosis of childhood disorders and impair-ments and a corresponding increase in professional interventions (Graham and Sweller2010; Underwood 2008).

Collective indifference

Richard Sennett published his 2004 Castle Lecture series at Yale University in a book enti-tled The Culture of New Capitalism (Sennett 2006). Sennett (ibid.) depicts a modern socialimaginary (Taylor 2004) of competitive individualism where community is fractured, andtowns resemble commuter hubs. It is a world where people, living under a spectre of use-lessness, scramble to adapt – a world where the craftsman is expendable, where the frag-mentation of the short term is prized over vocational fidelity. New geographies of injusticeemerge (Harvey 1996; Sibley 1995) and the fault lines of poverty and prejudice are etcheddeeper (Kozol 1991, 2005).

Detachment drives the neoliberal ethic. Kevin McDonald (2006) observes the replacementof solidarity with fluidarity. Zygmunt Bauman (2004), in his book Wasted Lives, traces theproduction of the despised flawed consumer. These people are the collateral damage of thecompetition state (Jessop 2002; Cerny 1990). This wastage of people is described in a benignlyimpersonal language. The ‘currency crisis’, ‘the terms of trade’, ‘a market adjustment’, ‘thedownsizing or rightsizing’ cast aside increasing numbers of redundant people. Competitionincreases and neighbours turn on each other. Most feared is the stranger, the alien, and theperson who is different, for they represent a threat in a contracting labour market. Para-doxically, the liberal discourse of multiculturalism, diversity and inclusion struggles to concealour growing mixaphobia (Bauman 2004).

Against this backdrop grows our condition of collective indifference (Slee 2010). We feelencouraged and able to turn away from the other. The hand of cooperative interdependenceis extended to our equals and most particularly to those who may contribute to our trajectoryof success. How this condition of collective indifference emerged and is sustained is complexand has expended rivers of ink. Let us point to two factors relevant to this discussion. First,bestowed understandings; second, professional knowledge and interest (Slee 2010).

Bestowed understandings

Bestowed understandings build oppressive epistemologies that disable. How do we come tounderstand disability? Stiker (1999) provides a meticulous history of disability and the devel-opment of powerful and oppressive forms of knowledge of disability. Knowledge is formedthrough the building blocks of expert discoveries and explanatory frames – typically medical –religious pronouncements, cultural representations and cultural bricolage. Nursery rhymesmake way for novels, plays, films, television and art to build a composite knowledge. Thisknowledge is mediated by and may augment expert statements and personal biography.Accordingly, we can see the collision and fusion of different perspectives of disability as cata-logued by scholars and activists such as Michael Oliver (1990, 2009), Colin Barnes et al. (2002),Carol Thomas (1999), Tom Shakespeare (2006) and Tanya Titchkosky (2003). It is importantto identify the hierarchies of knowledge and the subjugation of disabled people’s contribution


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to building official accounts and popular understandings of disability. These different perspec-tives or disability discourses may be summarised as shown in Table 19.1.

While it may be tempting to assign these discourses to a historical chronology, linearrepresentations are misleading. Notwithstanding our liberal sensibilities, observations ofcontemporary society across the globe readily reveal each of these ways of thinking aboutand representing disability. Thus, we can observe policy contradictions whereby inclusiveeducation is supposedly advanced through the practice of segregation.

In their analysis of global education policies Rizvi and Lingard (2009) draw on the politicalscientist David Easton to lay the foundations of public policy. ‘The essence of policy’, arguesEaston, ‘lies in the fact that through it certain things are denied to some people and madeaccessible to others. Policy … consists of a web of decisions that allocates values’ (1953: 129–30). Education policy follows the neoliberal moral compass. Competitive individualism isboth ethos and practice. This ethic is manifest in current education policy practices (we delib-erately do not call them educational practices). The imposition of a national curriculum thatembraces particular cultural, class and gender values excludes many of the students destined toexperience it. These students are at an immediate disadvantage. Overlay this curriculum with aseries of high-stakes tests that have serious flaws as instruments of assessment (Stobart 2008) andwhich obstruct our thinking about using assessment for learning (Wiliam et al. 2004) and weerect more barriers to students’ participation in schooling. On top of this comes a rigid systemof inspection that undermines the professional decision-making of teachers. Publishing league

Table 19.1 Summation of disability discourses

Disability discourse Explanation Responses

Fear and loathing Disability is seen as an abhorrentdefect. Impairments are oftenexplained in religious terms, as God’spunishment for the sins of the parents.Disabled people are accordinglycharacterised as representing danger.

Genocide.Eugenics.Institutionalisation.Segregation.Ridicule.Ignorance.Isolation and hiding.

Pity and charity Disability is perceived as a personaltragedy and disabled people are seen asbeing in need of charity.

Institutionalisation.Begging as an acceptable social role.Expectation of individual heroismto overcome impairments.Segregated schooling.Sheltered workshops.Shame.

Medical Disability is seen as a consequence ofdefective or disordered individualpathology. This results from geneticdisorder, accident or disease.

There is a requirement for expertdiagnosis, intervention andtreatment with a view to cure,rehabilitation or normalisation.

Rights Disability is a measure of the barriersgenerated from the social response. Inother words, disability is the burdenpeople must carry, the barriers theywill encounter because of society’sinability to deal with difference.This is the social model of disability(Oliver 1990).

Changes to architectural, legislative,political, economic, social andcultural structures and relations ofsociety in order to enable people toassume their rights of citizenshipand participation.


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tables that rank schools on the basis of students’ performance in GCSE examinations intensifiesschools as sites of performativity (Ball 2008) and failure. In this climate there is increasedlatitude for student disengagement and teachers’ professional alienation.

Caught within these policy strictures schools become apprehensive about those studentswho may lower their rankings. As we have already noted, Gillborn and Youdell (2000)describe the way in which schools practise a form of educational triage as they determinewhich students could be pulled through and those who are not worth the effort. In Australia,Bob Lingard (2011) observes schools asking some students to stay away from school whenthe national tests in literacy and numeracy in Years 3, 5, 7 and 9 take place.2 The availabilityof an expanding range of categories of special educational needs and the availability of specialclasses and units inside and outside of school becomes highly seductive for schools looking toimprove their academic profile. In this way, policy enables and disables; it allocates those whohave value and those who are invalids.

Professional knowledge and interest

Nikolas Rose returns to Foucault’s (1973) Birth of the Clinic to suggest that:

the epistemological, ontological, and technical reshaping of medical perception at thestart of the nineteenth century came about through the interconnections of changesalong a series of dimensions, some of which seem, at first sight, rather distant frommedicine.

(Rose 2007: 9)

In order to understand the biopolitics of the twenty-first century Rose employs a number oflines of inquiry. He traces the movement of medical focus to the molecular level and with itthe amalgam of disparate disciplines including computational engineering, mathematics, sys-tems biology and pharmaceutical engineering. This new focus on the genome project hasvalorised ‘technologies for optimisation’. People are reduced to their molecular elements, totheir genetic predisposition. Accordingly, we advance technology to intervene in what wereonce considered the natural patterns of life. Decisions are made about the optimums of healthwhich themselves have a significant impact upon a new ethics. Decisions about the value oflife forms and population characteristics have shaped a new ethics and the formation ofconsumer eugenics (Rose 2001).

In an era of new somatic knowledge and tastes we have become health consumers andregulators. This is particularly interesting in the subjective area of behaviour and mentalhealth. Norms are established globally through contestable (Kutchins and Kirk 1997) diag-nostic manuals such as the one published by the American Psychiatric Association (2000).There exists a union of interest around the discovery, diagnosis and treatment of behaviouraldisorders. A new political economy of behaviour is apparent where large and powerful healthidentity lobby groups such as Children and Adults with Attention Deficit/HyperactivityDisorder (CHADD) in America coalesce with the medical fraternity, the pharmaceuticalindustry and education organisations to effectively lobby for a rapidly and unevenly growinggroup of children who are hard to manage in schools (Slee 1994, 2010).

Our point here is not to deny the existence of attention deficit hyperactivity disorder. Wedo not have the evidence to make such a judgement. The concern we have, based on therapid escalation of diagnosis, conflicting expert opinion about the science of attention deficithyperactivity disorder (Rose 2005) and highly disproportionate incidence (Graham 2010), is


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that more children are at risk of being categorised as having special educational needs andexperiencing an attenuated experience of schooling. Where students are seen as the bearers ofresults, the temptation for classroom teachers to refer children out becomes irresistible. Theabundance of experts and special educators convinces teachers that certain children are nottheirs to teach. Or if they are to stay in the classroom, their presence is conditional on theprovision of a minder or teacher aide who all too often becomes the de facto teacher(Rutherford 2012).

In this climate the condition of collective indifference flourishes. The racialisation of specialeducational needs is an enduring feature of the educational landscape; in England, we witness adisproportionate consignment of Caribbean boys to special education (Tomlinson 1981; Gillborn2008). In America, this finds its parallel in the over- and under-representation of AfricanAmerican and Latino students in special education (Parrish 2002; Ferri and Connor 2006).

Education reform and disability studies in education

In the space of this short chapter it is not possible to provide a comprehensive blueprint forreform. Any attempt would be memorable for its reductive conceit. Instead what we offeris a general acknowledgement of the requirement for a fundamental reform to schooling ifit is going to move beyond the rhetoric of inclusion. We affirm a commitment to theneighbourhood school as the site of education for all children in the neighbourhood.Building community based on the representation of its rich diversity should be more thanan exercise in absorption of assimilation (Bernstein 1996). The educational mission ofschooling should incorporate an apprenticeship in democracy (Knight 1985; Touraine2000). Slee (2010: ch. 9) considers elements and tasks for the education reform project.Rather than restate that work, let us consider the place of disability studies in education inthe general reform agenda.

Faced with the rising clamour for teacher education programmes to train teachers who areknowledgeable about inclusive education, the usual strategy adopted by faculties of educationinternationally was to charge special educators with this responsibility. The result has been animpossible union of different epistemologies in courses that are often called special andinclusive education. These courses tend to escort trainee teachers through a programme thatcontains the following elements:

� an introduction to the concepts of special and inclusive education;� a history of special and inclusive education with attention to legislation and its implications

for schools and teachers;� instruction in the recognition of students with special educational needs and in testing

for special needs;� instruction in categories of special educational needs – sensory impairments; behavioural

differences (including mental illness); physical impairments; intellectual impairments (stillreferred to as retardation in some programmes);

� an introduction to differentiated curricula and instruction in inclusive classrooms;� understanding protocols, including the development of individual education plans and

cross-agency work.

This is an indicative description and may be incomplete.Such courses are not an adequate introduction to inclusive education for a number of

reasons. These include, but are not limited to:


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The reductive reflex: Inclusive education has become default vocabulary for ‘special educa-tion needs’ (Slee 1996, 2010). Social and educational exclusion is ubiquitous, affecting morethan just disabled people. Exclusion proceeds through the intersection of a number of socialphenomena and unequal power relations. Building teachers’ understanding of exclusion andinclusion requires them to engage with the political economy of education and to understandthe intersections between curriculum, pedagogy, assessment and school organisation anddiverse student identities. For so long as inclusive education is reduced to special educationneeds, disabled people will be seen as a problem to be fixed.

Irreconcilable epistemologies: Conveying traditional special education theory and practicewithin an inclusive discourse is flawed and soon unravels. Based upon notions of defectology,special education presents a pastiche of medical, psychological and rehabilitation traditions,understandings and practices. Where attempts are made at holistic analysis based on, forexample, Bronfenbrenner’s (2005) ecological theory (Cooper 2008), the dominant discourserepresents medical utilitarianism.

Failure to address institutional causes of exclusion: Embracing the importance of institutionalequilibrium, insufficient scrutiny is applied to policy frameworks, the structure of power orthe implications of a social model of disability for schooling. The voices of disabled peopleare seldom enlisted in the production of theories and practices of inclusive education (Barton2003; Moore 2000, 2010; Oliver 2009).

The incorporation of inclusive education in teacher education programmes demands amore considered approach. Two features are essential. First is the saturation of the wholeprogramme with considerations of exclusion and inclusion so that inclusive education is apart of the orientation of teacher knowledge, skills and dispositions. This requirementassumes that teacher students will engage with critical race theory, gender studies and criticalpedagogy to enable them to understand the formation of barriers to access, participation andsuccess in education. Second is a requirement for the development of an understanding andcritical application of disability studies in education.

Disability studies in education and the development of inclusive educational

epistemologies, skills and dispositions

It is not our intention to rehearse a history of disability from a disability studies perspective.Such studies are readily available elsewhere, most notably in the work of scholars such asStiker (1999), Potts and Fido (1991), Foucault (1965), Mitchell and Snyder (1997) andBogdan (1988). Instead we will demonstrate the ways in which the fledgling field of disabilitystudies in education supports the ethical project of inclusive education (Allan 2005).

The American Education Research Association’s Special Interest Group (SIG) in DisabilityStudies in Education states its purpose and mission thus:

The mission of the Disability Studies in Education SIG is to promote the under-standing of disability from a social model perspective drawing on social, cultural,historical, discursive, philosophical, literary, aesthetic, artistic, and other traditions tochallenge medical, scientific, and psychological models of disability as they relate toeducation.

(American Education Research Association 2011)

This is indeed an ambitious agenda as the hegemony of traditional special education is manifest inteacher education and in policymaking. This is made more complex by the recent adoption by


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special education of a more liberal discourse of inclusion. This process has been observed over theyears by a number of researchers (Slee 1993; Brantlinger 2006). Brantlinger (2004) surveys theway in which the large glossy college textbooks for students of special education have beenupdated with the addition of a chapter on inclusive education. Some even opt for oxymoronictitles such as special and inclusive education.

Notwithstanding this liberal turn, the deep epistemological antimony occasionally erupts,sometimes descending into vitriolic debate. In 1995 Kauffman and Hallahan’s book, The Illusionof Full Inclusion: A Comprehensive Critique of a Current Special Education Bandwagon, was published.The book comprised a number of essays by prominent traditional special educators who arguedthat the bandwagon of inclusive education detracted from the achievement of special educationresearch and practice. The claims of inclusive education could not be registered as research asthey proceeded from an ideological position, namely full inclusion. By implication, research onlycounted as such if it embraced the positivist tradition of experimental design, replicating thelaboratory work pursued in the so-called natural or hard sciences.

In response, Ellen Brantlinger (1997) published a paper in the American Education ResearchAssociation’s journal, Review of Educational Research, that examined the claims collectively issuedby Kauffman and Hallahan and their colleagues. First, she examined claims that we can work inan ideological vacuum. This proposition has been repeatedly discarded as, at best, naïve or moretypically mischievous. In an interview conducted by Julie Allan and Roger Slee (2008) withDave Gillborn and Deborah Youdell the latter declared that for some researchers ‘ideology waslike sweat; you smell everybody else’s, but not your own’. Foucault calls for circumspection inconsidering ideology, and as Zizek puts it: ‘When some procedure is denounced as “ideologicalpar excellence” one can be assured that its inversion is no less ideological’ (1994: 4).

Anti-racist education researchers like Barry Troyna have also encountered this struggleover the presence of ideology in research. Troyna (1995) took up the challenge from hisdetractors who denounced his notion of ‘partisan research’ as an oxymoron. Racism, heargued, had tended to ‘be refracted through the lens of educational research’ and that criticalsocial research, in applying transparency and tests of scholarship, presented a form of integritynot apparent in the work of the so-called methodological purists.

Brantlinger’s ‘Using Ideology’ paper is particularly instructive for researchers as she thenwent on to apply a forensic twist to her critique. Brantlinger considered 18 key works oftraditional special educators in their critiques of inclusive education against Mick Dunkin’s(1996) analysis of types of errors in synthesising research in education. The errors Dunkinrefers to include:

� the exclusion of relevant literature;� unexplained selectivity of sources;� lack of discrimination between sources;� wrongly reporting details;� erroneously summarising positions;� suppressing contrary findings;� stating unwarranted conclusions and generalisations;� non-recognition of faulty author conclusions;� consequential errors;� failure to marshal all evidence relevant to a generalisation.

The consequences of such errors are serious, observes Dunkin (ibid.: 87). Syntheses ofresearch found in systematic literature reviews are influential in regard to subsequent research,


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policy and practice. According to Brantlinger, the risk is intensified by the seniority orprominence of the authors she identifies in their field. Her analysis of the 18 documents ispresented in a series of tables that reveal the failures of the authors to adhere to their ownminimum expectations for scientific research.

Brantlinger’s paper should not be read or dismissed as a methodological challenge to thedominance of empiricism and experimental design in traditional special education research.While she does recognise and advocate the incorporation of post-positivism in research, thepaper progresses a political struggle about the purpose and form of schooling. In particular, itlays bare a deeply political struggle between the opposing views of disability and segregatededucation. For paradoxically the new inclusive discourse of special education still advocatesfor choice of segregation and a ‘cascade’ of provision downwards, from which childrentumble to the margins of educational academic and social life.

There was no direct response from traditional special education to Brantlinger’s paper.Perhaps this was a result of her rigour. However, antagonism smouldered and later com-busted in the conservative special education journal Exceptionality in 2006. Herein Kauffmanand Sasso (2006) attacked the ‘intellectually bankrupt’ ‘postmodern fashionable nonsense’ ofGallagher (2004, 2006) and Biklen and Cardinal (1997).

In some respects, debates about methodological purity and ideology deflect from theessential epistemological fissure between traditional special education and disability studies ineducation. The former is founded upon understanding as a reflection of defective individualpathology. The response to such an assumption is that the task of the special educator is todiagnose the nature and severity of the pathological defect and then, armed with thatknowledge, devise special interventions, placements and programmes for that child withspecial education needs.

Disability studies in education takes a different view. Following Barton (1988), ‘special edu-cation need’ is seen as a euphemism for the inability or unwillingness of schools to educate allchildren. Disability is contingent on the response to impairment or difference. The challenge fordisability studies in education is that of identifying and removing barriers to educational access,participation and success. Such work recognises schooling as a site for the ‘politics of disablement’(Oliver 1990). Axiomatically, schooling holds the potential to be a theatre for enablement.

It is important to acknowledge that disability studies in education, though a relatively recentarrival to the education research arena, has a long intellectual lineage. Gabel (2005: 2) credits theUnion of the Physically Impaired Against Segregation, Vic Finkelstein and other disability acti-vists for the ‘social model of disability’. More importantly she reminds us that Finkelstein hadpreferred his original usage of the term ‘social interpretation’ of disability. Interpretation allowsfor historical-materialist analysis of the power relations that construct disability as being at theheart of the first generation of disability studies scholars. Equally, it allows us to recognise theintersections of other social phenomena that form the constellation of relationships of disable-ment and enablement. In this agency the individual experience of impairment and disability maybe brought into the analytic frame. Moreover, a range of analytic traditions assists in building amore nuanced understanding of the messy reality of disability politics.

In this respect the field of disability studies is transdisciplinary and exhibits contesting anddifficult debates about understanding disability. This is reflected in the positions struck in, forexample, Tom Shakespeare’s Disability Rights and Wrongs (2006) on the one hand, and MikeOliver’s second edition of Understanding Disability (2009) on the other. Post-structural theory,post-modernism, gender studies, post-colonial theory, actor network theory, critical discourseanalysis, critical race theory and queer theory are among a range of analytic paradigms thatare brought to disability studies in education.


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Most particularly, disability studies establishes a platform for the voices of disabledresearchers and activists in recognition of the history of the subjugation of their voice, and asa necessary step in changing the political relations of research (Oliver 1992; Barton 2003).Martha Nussbaum (2004) stresses the urgent need for social analysis by disabled people. Sheobserves that through the increasing publication of scholarship of disabled people about theirsocial situation, ‘it is possible to take measure of the isolation and marginalisation imposed uponthem, and the extent of their routine humiliations’ (Nussbaum 2004: 305). In education Moore(2000, 2010), Barton (2003) and Tregaskis (2004) urge for insider perspective in the construc-tion of analyses of exclusion and in developing inclusive education initiatives.

Disability studies in education: lessons for inclusive education

If we were to compile a list of lessons for inclusive education that we could draw from disabilitystudies in education it would exceed the limits of this chapter. We will commence the discussionunder three organising themes:

� establishing authenticity;� educating teachers; and� building community.

Establishing authenticity

As we have noted, the term inclusive education has been appropriated by special education.Inclusive education has become a casualty to a form of ‘eduspeak’ characterised by reduc-tionism and disconnection and is devoid of its original political intent. Reference to an essayby Edward Said (2000) called Travelling Theory Reconsidered, from his collection of essayspublished under the title of Reflections on Exile and other Literary and Cultural Essays, illustratesour point. Said (ibid.: 426) discusses the way in which ‘theories sometimes “travel” to othertimes and situations, in the process of which they lose some of their original power andrebelliousness’. He draws upon Georg Lukacs’s theory of reification to make his point. Ori-ginally reification was a powerful critique of hegemonic discursive instruments of oppression.At the time of writing, Lukacs delivered a set of conceptual tools for better understandinghistorically specific sets of social relations as a lever for political agency. Said’s argument isclearest in his own words:

[T]he first time a human experience is recorded and then given a theoretical formula-tion, its force comes from being directly connected to and organically provoked by realhistorical circumstances. Later versions of the theory cannot replicate its original power;because the situation has quieted down and changed, the theory is degraded andsubdued, made into a relatively tame academic substitute for the real thing, whosepurpose in the work I analyzed was political change.

(Ibid.: 436)

Said follows the pathway of the theory of reification:

The point I made about all this was that when they were picked up by late Europeanstudents and readers of Lukacs (Lucien Goldmann in Paris, Raymond Williams in


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Cambridge), the ideas of this theory had shed their insurrectionary force, had beentamed and domesticated.

(Ibid.: 437)

Stretched to adhere to changed political circumstances, the newfound elasticity subverted theoriginal intent. Add to this the fact that as theories such as reification are ‘picked up’ andpopularised, inside and outside the academy, they attract respectability and prestige. Subse-quently there arises the clamour for orthodoxy and dogma is established.

Where established epistemological authority and professional interest are at play littlewonder that this kind of appropriation occurs. Paul Gilroy reflects on the resilience of raciol-ogy despite its scientific refutation through the discovery of DNA:

Raciology has saturated the discourses in which it circulates. It cannot be readilyresignified or de-signified, and to imagine that its dangerous meanings can be easilyre-articulated into benign, democratic forms would be to exaggerate the power ofcritical and oppositional interests.

(2000: 12)

Our argument is that following the establishment of disability discrimination legislation across arange of nation-states, the ratification of international conventions on the rights of children andpersons with disabilities and the saturation of inclusive education discourse through interna-tional organisations such as the Organisation for Economic Co-operation and Development(OECD), the United Nations Educational, Scientific and Cultural Organization (UNESCO),UNICEF and the World Bank, there has been a rush to apply the rhetoric of inclusive edu-cation. Sadly, the practice that it describes is often less than inclusive. Moreover, as Gilroycounsels, dismantling the epistemology of special education demands more than linguisticrevisions. Powerful interests are at stake and change will be difficult. Disability studies in edu-cation teaches us to be vigilant. It invites us to distinguish between experts and expertise as weseek a correction to unequal power relations. More specifically we must continually strive toensure that inclusive education reforms provide a platform for disabled people and their advo-cates to exert their leadership in changing educational structures, practices and cultures.

Educating teachers

Jurisdictions around the world have responded to disability discrimination legislation bymandating that pre-service teacher education and continuing professional development ofqualified teachers equip teachers to provide an inclusive education. Universities and teachers’colleges around the world have responded positively to this request. Most often this hastranslated into the passing of the responsibility for inclusive education to departments ofspecial education. These special education departments then seek accreditation for newmodules or courses in ‘inclusive and special needs education’. Many of these courses areframed according to the sequence of revised glossy special education textbooks (Brantlinger2004). Accordingly, student teachers, together with experienced teachers, are given a series ofclasses that acquaint attendees with a range of different student pathologies that reflect physical,intellectual and sensory impairments, syndromes and disorders. Courses also include introduc-tions to the ever growing ‘spectrum’ of behavioural, emotional and attention disorders. Thereis also the need for teachers to learn about the symptoms and aetiology of specific learning


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difficulties. Additionally, such programmes will provide students with a chronology of thedevelopment of special education needs policies.

Less frequently are students invited to think of inclusive education as a political response tothe problem of exclusion, or of the many and changing forms of exclusion. Were this thecase, courses would need to interrogate the complex relationships between schooling andfailure and the overlapping intersections of race, language, poverty, gender, sexuality, ethni-city, disability and schooling. Such courses would need to dissect the assumptions behind andthe effects of pedagogies, forms of assessment, curriculum choices, the physical environmentof schools, the structure of the workforce, the culture of schools and so the list proceeds.

Rarely are teachers offered disability studies in education as a means to critically engagingwith dominant and oppressive epistemologies or to encountering the voices of disabledresearchers and their allies. The need for this is obvious to us, but simply not on the radars ofothers. Suzanne Carrington and her colleagues have approached this through the developmentof a core Service Teaching programme (Carrington and Saggers 2008). Within this programmestudents engage with sociocultural theories to understand diversity through the interrogation ofreadings and their own journals as they work in a variety of community settings. In NewZealand, the Inclusive Education Alliance has brought teacher educators together with teachers,parents, disabled people and advocates to consider what reforms are required to enhanceteachers’ knowledge, skills and dispositions pursuant to inclusive schooling.

At the core of our call for radical approaches to teacher education is the premise thatteaching is a political activity. Teachers are instrumental in the determination of socialfutures. As Ball (2008) and Apple (2006) remind us, teachers operate within policy frame-works and their agency is structurally constrained. There remains the possibility for findingspaces for change (Jordan and Goodey 2002; Slee 2010). Making this possible assumes aneducation in critical thinking rather than just instrumental training.

Building community

We have suggested that schools have embraced a neoliberal ethic of competitive individual-ism. This is apparent in high-stakes testing programmes (Johnson and Johnson 2006; Stobart2008), national league tables (Ball 2008) and international indicators and testing programmessuch as OECD’s Programme for International Student Assessment (Rizvi and Lingard 2009).Where schools are pitted against each other to demonstrate ever improving test scores anincreasing number of students become vulnerable to failure and rejection by their schools.Parents with the material means to do so become savvy education consumers and set out insearch of the best school for their child. Children are on the move; schools often do notreflect the composition of the communities of their geographic location.

Researchers such as Jonathan Kozol (2005) in the United States and Gillborn and Youdell(2000) in the United Kingdom have reflected upon the racialisation of school failure. Kozol(2005) has also noted the way in which schools in the US, where the majority of childrenenrolled are African American (more than 95 per cent), are described as multicultural. Thegrowing trend to diagnose children for behavioural disorders and for education authoritiesto create alternative settings for ‘troubling and hard-to-teach children’ further fracturescommunity.

Segregated special education has historically narrowed the education of children. Childreneducated in the neighbourhood school have little understanding of the diverse nature of theworld when they emerge. Opportunities are missed to learn new forms of communication,to learn from others and to appreciate that interdependence and cooperation make for


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stronger social bonds. Moreover, the absence of disability studies in the school curriculumseriously attenuates knowledge, promotes ignorance and poor social relations.

Conclusion

This chapter has argued for disability studies as a necessary step in the authentication ofinclusive education. We take it as a given that inclusive education is a precondition for anapprenticeship in democracy (Pearl and Knight 1998). In 2000 the French social theoristAlain Touraine posed the question: can we live together? He suggested that the spirit of a societywas reflected through its juridical and education systems. If this is the case, then an examinationof the plight of disabled children leads us to surmise that we live in a mean-spirited world. LikeBernstein (1996) before him, Touraine (2000) offers democratic education as the first stepin reparation. Understanding disadvantage and oppression demands an education in disabilitystudies and a decoupling of inclusive education from the archaic notion of special educationneeds (Slee 2010).

Notes

1 When compared with Integration in Victorian Education (also known as the Collins Report) (VictorianMinistry of Education 1984), which proceeded from principles of rights, the 1978 Special Education

Needs report is a more conservative text.2 For more information on Australia’s National Assessment Programme – Literacy and Numeracy

(NAPLAN), see www.naplan.edu.au (accessed 30 August 2011).

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20

INDEPENDENT LIVING AND THEFAILURE OF GOVERNMENTS

Charlotte Pearson

Introduction

The term ‘independent living’ refers to all disabled people having the same choices, controland freedom as any other citizen – at home, at work and as members of the community.Writing in the late 1980s Brisenden noted that this does not necessarily mean that anypractical assistance required should be under the control of disabled individuals but that‘independence is created by having assistance when and how one requires it’ (1989: 9). TheIndependent Living Movement is, therefore, based on four key assumptions:

� That all human life is of value.� That anyone, whatever their impairment, is capable of exercising choices.� That people are disabled by society’s reaction to physical, intellectual and sensory

impairment and to emotional distress have the right to assert control over their lives.� That disabled people have the right to fully participate in society. (Morris 1993: 21)

More recently the drive towards independent living has been underpinned globally by alegal framework. The adoption of the United Nations Convention on the Rights of Personswith Disabilities (CRPD) in 2008 was a turning point in the international recognition ofdisability rights and its importance has been underlined by a number of commentators. AsHarpur argues, ‘the CPRD goes further than merely restating rights. It creates a new rightsdiscourse, empowers civil society and renders human rights more obtainable for persons withdisabilities than any time in history’ (2012: 1). Series (2015) also highlighted the importanceof many different strands of disability activism in the drafting of the Convention. Thisincluded over 40 countries and over 400 different non-governmental organisations anddisabled peoples’ organisations.

Integral to the CRPD was the inclusion of Article 19, which focused on the right toindependent living – the first such right of its kind. For Kanter (2015), while this offered thepotential to transform how we think about independence and autonomy, for it to be usedin any meaningful way it must be underpinned by the socio-economic requirements ofappropriate housing, accessibility and support and the right to exercise choice as to whereand with whom one lives. The focus of this chapter is therefore to critically assess the

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broader socio-economic conditions faced by disabled people in the United Kingdom bylooking at the framework for state support and independent living through the socialsecurity and social care systems. By examining how changes in these policy domains haveimpacted on the lives of disabled people over the last decade, it is argued that rather thanthe promotion of a new rights-based discourse, a reduction in the parameters for inde-pendent living has emerged.

Before doing this, we look at how disability activism has framed the parameters of policychange over the past 40 years. The chapter begins by exploring how the actions of a smallgroup of disabled students in the United States motivated the development of a growingnetwork of activism across the UK during the 1980s and 1990s. This paved the way forcampaigning for independent living, first through the growth of a network of Centres forIndependent Living (CILs) and then (as set out later in the chapter) through the push tosecure direct payments for disabled people as an alternative to directly provided services.

The discussion then looks at how the UK’s social security system has impacted on inde-pendent living. This presents something of a mixed picture in that owing to reforms in the1980s and 1990s new payments were introduced, which at least in part made some recognitionof the additional costs faced by many disabled people. However, this was soon followed by along-term process of narrowing eligibility for disability support and the global financial crisis in2008 became the precursor to a period of sustained austerity, which has seen disabled peoplebear the brunt of policy reform. A fundamental erosion of independent living occurred as keycomponents of social security support for many disabled people were narrowed and reframed.At the same time, local authorities charged with providing social care have seen their budgetscut by around one-third (West 2013). These major cuts were implemented at a time whenpolicies espousing the language of personalisation, co-production and partnership werepromoted at the forefront of legislative change. This is explored through each of the fourcountries of the UK, where personalised social care has now entered the mainstream. Thechapter concludes by assessing the challenges for independent living and an appraisal offuture possible directions post-Brexit.

Activism and independent living: the emergence of anagenda for change

The concept of independent living originated in the United States in the early 1970s. Asdiscussed more fully in the first edition of this chapter (Pearson 2012), at this time, threedisabled students at the University of Berkeley successfully campaigned to be able to employpersonal assistants and live in self-managed accommodation. This, in turn, triggered theestablishment of the first CIL in Berkeley in 1972 (Barnes and Mercer 2006). Drawing onthe model of personal assistance support favoured by the students, the CIL’s goals were tofacilitate the integration of disabled people into the community by providing a comprehensivesystem of support services (Centre for Independent Living 1982). The success of these ser-vices also attracted considerable interest from the UK and small groups of disabled peoplein residential care began to ask questions about the type of support they were receiving.Important successes were recorded in areas like Derbyshire (in the English Midlands),where disabled activists played a pivotal role in the development of user-controlled servicesin the UK (Barnes and Mercer 2006).

In the UK, the issue of group control therefore became a defining issue in transformingattitudes towards disability throughout the 1980s (Oliver 2009). This saw the beginning of achallenge to existing impairment-specific organisations which relied on charitable fundraising

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activities to provide services for disabled people. Indeed, by 1990 the representation of dis-abled people had been established at a number of levels. At the international level, DisabledPeoples’ International had been set up and national co-ordination was facilitated through theBritish Council of Disabled People (BCODP). This was matched by the emergence of over100 constituent BCODP organisations, most of which were local coalitions of disabledpeople or CILs.

Early attempts to establish independent living projects in the UK met with only limitedsuccess and were often not under the control of disabled people themselves. However, by theearly 1980s real change began to be achieved through the efforts of disabled people with theemergence of the type of independent living projects described earlier in Derbyshire, along-side similar initiatives in Edinburgh, Southampton, Rochdale and Gillingham. As Priestley(1999) suggests, these early projects not only provided tangible lived experiences of barrierremoval but also demonstrated the potential for an alternative mode of self-organised welfareproduction (Prideaux et al. 2009). They also contributed to growing support for cash alter-natives to directly provided services and the subsequent campaign for direct payments to bemade to disabled people. This topic will be returned to shortly.

Independent living by the back door?: Facilitating support throughsocial security and the rise and fall of the Independent Living Fund

As outlined above, the shift towards a network of UK disability activism during the 1980sand 1990s was integral to challenging the service structure in the UK. This occurred withinthe context of a broader policy framework which sharply reduced opportunities for inde-pendent living among the disabled population. However, from the mid-1980s reforms insti-gated through the Conservative government’s review of the welfare state began to makesome important changes which, by default, introduced some significant opportunities forindependent living. This shift emerged from two areas of policy change: a shift from themeans-tested Supplementary Benefit to a more restrictive system of Income Support and thesubsequent introduction of the Independent Living Fund (ILF)

At the time, payments made to many disabled people through the social security benefitssystem came under threat from the Conservative government’s broader ideological themes ofreducing the role of the state and ‘targeting’ welfare on the poorest and most ‘deserving’.While earlier analysis traditionally had placed disabled people in this category (see Drake 1999),the Conservative reforms of the mid-1980s instigated a long-term process of narrowingeligibility, a stance that has been maintained by successive UK governments.

Significantly, the reforms saw the removal of the ‘additional requirement’ payments asmeans-tested supplementary and housing benefits were changed to Income Support. Fur-thermore, the ‘additional requirement’ payments covered provisions such as extra heating andthe cost of private domestic assistance – a provision used by an estimated 300,000 disabledpeople (Glendinning 1992). Although these extra payments were consolidated into fixedweekly ‘disability’ and ‘severe’ disability premiums, even by the government’s own figures itwas estimated that around 80,000 ‘sick and disabled’ people would lose out as a result of thisshift (ibid.). Therefore, a temporary solution was set up in the form of the ILF.

The establishment of the ILF in 1988 was intended to enable a small number of disabledpeople to receive cash payments to buy in personal assistance to support their needs. At thetime, it was envisaged that the number of recipients would be low and that payments fromthe fund would only be made for a five-year period (Barnes and Mercer 2006). Although theILF assumed a ‘service’-based rationale, its position differed from mainstream local authority

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provision of services for disabled people in that it was a national charity, covering the entireUK. Implementation proved to be remarkably successful – with take-up significantly out-stripping government expectations – as well as revealing the many benefits of the personalassistance scheme to users (Kestenbaum 1992). During the period 1988–2015 46,000 disabledpeople received ILF payments.

As well as providing users with a cash payment to buy in their services of choice, the ILF’sappeal for many local authorities was that it provided a top-up resource for services outsidethe available council budgets for persons with the highest support needs. Recipients couldtherefore access an ILF payment as well as a direct payment or personal budget from the localauthority (if their services would otherwise exceed the cost of residential care). However, in2015 the ILF was closed in England and Wales. Funding was allocated to local authorities,but without it being ring-fenced. The timing of this was particularly problematic for localauthorities as austerity cuts on key services began to bite. As a result, since then, mostcouncils have failed to guarantee payments for ILF users and many are facing uncertaintyover their future support (Porter and Shakespeare 2016). Research carried out by InclusionLondon (2018) showed that one in three London councils have cut the packages of morethan one-third of former ILF claimants.

By contrast, the Scottish government has maintained existing payments through a newScottish Independent Living Fund (SILF) and have also funded a new ILF Transitions pro-ject – a discretionary fund which allocates one-off payments to young disabled people (aged16–21) for projects and/or equipment which enables them to live more independently. TheSILF also covers support for ILF users in Northern Ireland. While this has been welcomenews for those already in receipt of the ILF, as elsewhere in the UK there remains a newgeneration of disabled adults with high support needs who find themselves without the cer-tainty and flexibility of ILF support. While the Scottish ILF Transitions funding does offer awelcome new stream of funding for young disabled people, payments do not represent aregular income for applicants. Using the acronym ILF in the title of the project was thereforeperhaps more of a political rather than pragmatic decision by the Scottish government. Policydivergence on the ILF forms part of an increasing shift in state support for disabled peopleacross the UK. We will return to this later in this chapter.

Anti-social benefits: the shift from the Disability Living Allowance tothe Personal Independence Payment

In the UK, similarly to many other Northern European countries, the period 1940–1997 wascharacterised by growing welfare support unlike the wartime compensation-type programmesto those which acknowledged the extra cost of welfare support regardless of impairment/illness or income and whether a disabled person had employment or not (Roulstone 2015).Yet this was by no means a panacea for independent living, as provision was based onbroadly paternalistic rather than rights-based discourses.

Disability Living Allowance (DLA) was introduced in 1992 as a non-means-tested andnon-taxable payment that formed the main source of benefit for working-age disabledpeople. A key objective of the Conservative government in introducing DLA was toimprove the targeting of funds for disabled people in the greatest need. Many disabled peopleat the time welcomed the move to self-assessment, which formed the basis of the applicationprocess (Machin 2017). This required claimants to describe the impact of their impairment orhealth conditions on a form running to over 40 pages. It was anticipated that this wouldreduce the need for formal medical examinations, instead allowing adjudication officers to

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determine entitlement on the basis of clear evidence from claimants. However, as Machin(2017) observes, by 2010 the Department for Work and Pensions had become increasinglyconcerned that just over two-thirds of DLA claims were being made without reference tomedical evidence, with eligibility often focusing on the nature of an individual’s conditionrather than its impact. There was also increasing concern over the growth of the benefitpopulation and it began to be perceived that it was too easy to secure and stay in receipt ofdisability benefits (HM Government 2010). Reform therefore emerged at a time when thegovernment was increasingly promoting an idea that too many claimants had wrongly enteredthe disability category (Roulstone, 2015). This led to major changes to the foundations of socialsecurity for disabled people, with the replacement of DLA with Personal Independence Payment(PIP) and a focus on the out of work benefit, Employment and Support Allowance (ESA).

The replacement of DLA with PIP was introduced through the 2012 Welfare ReformAct. Like DLA, PIP is non-means-tested and non-taxable and has two components: mobility,based on the individual’s ability to get around; and daily living, based on the individual’sability to perform a range of daily living activities. Unlike DLA, entitlement to PIP is basedon an assessment carried out by an approved health care professional and is subject to regularreview. This has resulted in continual reassessments of disabled people, many of whom havelong-term and stable conditions. Since its inception, there have been numerous complaintsabout the stress and anxiety engendered by a hostile environment during reassessment andhow this has impacted on applicants (Ryan 2017). While 65 per cent of PIP tribunal hearingshave ruled in favour of the claimant, research carried out by the market research companyIpsos MORI on behalf of the Department of Work and Pensions (DWP 2018) suggested thathundreds of thousands of applicants would have taken further steps to appeal against decisionsmade about their claims if the system had been less stressful and more accessible.

The more punitive approach to disability support has also been a feature of ESA. Itsimplementation came about under the Labour government (1997–2010), replacing Incapa-city Benefit. Changes limiting its coverage and value subsequently formed a key part of theausterity programme introduced by the Conservative-Liberal Democrat coalition governmentand subsequent Conservative government, with estimates produced by the House of Com-mons Library that ESA and PIP will have shrunk by £5 billion, or 10 per cent, since 2010(Butler 2018a). Its introduction can also be seen as part of a wider shift towards behaviouralconditionality in the benefits system (Clasen and Clegg 2011) in which claimants are requiredto carry out work-related activities or face the threat of sanctions to their benefits. As Geiger(2017) sets out, the increased focus on conditionality was part of a wider international trendand was actively encouraged by the Organisation for Economic Co-operation and Devel-opment (2015), albeit with little evidence to support its implementation or impact. Integralto ESA has been the controversial Work Capability Assessment (WCA). This is test used bythe DWP and implemented by private agencies who have been contracted to determinewhether claimants are eligible for support. The wealth of criticism levelled at the WCA hasfocused on its failure to work effectively and also on its links to the increasing incidence ofsuicide, self-harm and poor mental health in those who have either just gone throughassessment or who are awaiting reassessment (Warren et al. 2014; Barr et al. 2016). This wasmore recently echoed more broadly by the UN Committee on the Rights of Persons withDisabilities (Equality and Human Rights Commission 2017) which found that the impact ofausterity on disabled people in the UK amounted to the systematic violation of their rights.This view was influenced not only by the operation of the WCA, but was linked to thebroader framework of welfare reform and cuts to social care over the past decade. Thisincludes the introduction of Universal Credit, which is examined is the next section.

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Universal Credit

In addition to the shift from DLA to PIP and the roll-out of ESA, the most importantsocial security reform to be implemented since 2012 has been the introduction of UniversalCredit (UC). This formed the centrepiece of the Conservative-Liberal Democrat coalitiongovernment’s (2010–2015) welfare reform programme and set about replacing six means-tested working-age benefits – Job Seeker’s Allowance, Housing Benefit, Working TaxCredit, Child Tax Credit, Employment Support Allowance and Income Support – with asingle payment. Since its inception it has attracted widespread controversy for being overlyambitious, ineffective and poor value for money, with one in five claimants not receivingtheir full payment on time (National Audit Office 2018). Critics have also highlighted anincrease in food bank referrals in areas where the policy has been rolled out (Butler 2018b).Timescales for its completion have been subjected to ongoing revision, with the originalfinish date of 2017 pushed back to 2019.

UC is underpinned by a punitive system of tiered sanctions and fines, representing whatDwyer and Wright have termed, ‘a major expansion and intensification of personalisedbehavioural conditionality’ (2014: 27). For many disabled people, the introduction of UC hasbeen particularly devastating. Research by the charity Mind has argued that up to 750,000disabled people are at risk of being left without any income by the migration of their benefitsonto UC (2018). From the outset, the UC system has been plagued by payment delays, withESA claimants alone losing an average of £5,000 following multiple failures at the DWP(National Audit Office 2018). Criticisms of the DWP indicate that it has been slow in cor-recting underpayments, even after accepting responsibility for errors. The National AuditOffice (2018) has also highlighted major concerns, suggesting that many disabled people willlose out because they cannot navigate the complex online system or fill out the necessaryforms when they are unwell. More specifically, many disabled people have seen additionalpayments disappear when moving onto UC. This was highlighted in a 2018 High Courtruling which stated that the roll-out of UC was unlawfully discriminating against disabledpeople by removing these essential benefits (Bulman 2018). In such cases, the SevereDisability Premium and Enhanced Disability Premium both disappear through the shift toUC, leaving claimants with an annual loss of approximately £1,000.

These changes in disability support through the social security system fostered a new era ofstress and uncertainty in the lives of many disabled people in the UK and have fundamentallyundermined options for independent living. However, they form only a partial picture of thenetwork of support available to disabled people in the UK. As we turn to examine the roleof the social care system, there are a number of instances whereby earlier steps towardsenabling independence have been eroded more recently by programmes of austerity.

Care markets and carving out routes to independence

During the post-war era UK community care services that were established to support dis-abled people lacked a cohesive framework. For the Conservative governments that were inpower in the 1980s, this was accentuated by an escalation in the cost of care. The maincontributor to these rising costs was a ruling by the Department for Health and SocialSecurity which made it easier for residents of private and voluntary homes in receipt ofsupplementary benefit to claim their fees from the social security system. This meant thatpublic subsidy of individual support was based solely on an assessment of financial entitlementand not on a need for such care. Although this focused largely on the provision of residential

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care for older people (Means et al. 2008), it added considerable impetus to policy changeacross all user groups. For younger disabled people, the closure programme of long-stayinstitutions and the gradual emergence of independent living projects contributed to broaderchanges in support (Priestley 1999). As a result, the government commissioned a series ofreports to examine why community care policy had remained so disjointed over such a longperiod of time.

This period witnessed the creation of local mixed economies of care, whereby serviceswere to be provided through the private and voluntary sectors. While promoting voluntaryand private groups as integral service providers, a key role was also given to informal care – afocus that was problematic for many disabled people seeking to promote services based onthe principles of independent living (Morris 1993). A formal policy of community care waseventually set out in the 1990 NHS and Community Care Act. Fundamentally, the Actdetermined that there should be a closer link between health and social services and theprivate and voluntary sectors. This, in turn, would be facilitated through the introduction of‘local care markets’ whereby it was envisaged that the local authority would be transformedfrom being an actual service provider to functioning purely in an enabling role. Thus,packages of care would be organised by a care manager and developed in accordance with anindividual’s needs and circumstances (involving an assessment of impairment-related func-tional limitations, family situation and financial resources) (Barnes and Mercer 2006). Centralto this shift was a more marketised system of ‘care’ services and the promotion of the user as aconsumer of services (although the impact of this philosophy varied in different parts of theUK with England its strongest proponent). At this time, social care was not yet fullydevolved so although there were differences in the adoption of community care policy –

notably in relationship to local care markets – the broad framework also applied in Scotland,Wales and Northern Ireland This was underpinned by a new rhetoric of empowerment andinvolvement, in which it was envisaged that disabled people and other user groups wouldhave more choice, control and ultimately independence through their service provision. TheLabour government that came into office in 1997 reiterated support for the market in socialcare through its modernisation agenda for the public services.

Many disability commentators were highly critical of community care policy and whatthey saw as a neglect of the philosophy and aims of the independent living movement(Morris 1993). The limitations of a service-led structure which restricted choice and controlin accordance with the availability of limited services formalised through the 1990 Act simplyreinforced the lack of choice and control available to disabled people. Therefore, as the possibilityof direct payments emerged from the mid-1990s, there appeared to be, at last, a move towardssubstantive changes in service provision for many disabled people. The following sectionexplores the impact of these changes on the independent living agenda.

Cash for care: independent living in the era of direct payments and thepersonalisation of social care

Discussion earlier in this chapter showed how independent living projects in different parts ofthe UK began to emerge during the 1980s. As these developed, so too did calls from thewider movement for a formal system of cash-for-care or direct payments in the UK whichwould allow disabled people to choose who and when support services were provided. A keyexample of indirect payments – whereby a compliant local authority was willing to facilitatethe equivalent cash value of direct services through a third party – was shown earlier throughthe work of activists in Hampshire and others from different parts of the UK are documented

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elsewhere (see, for example, Priestley 1999; Pearson 2000). However, by the early 1990salthough some local authorities were happy to proceed with making indirect payments as aninnovative form of service delivery, nationally the Conservative government was lessconvinced and challenged their legality.

Yet these localised initiatives formed an important part of the campaign for direct paymentsacross the UK (Pearson and Ridley 2017). Likewise, the experiences of those in receipt of ILFmonies were highlighted in research commissioned by the BCODP (Zarb and Nadash 1994)and were used to secure the U-turn by the Major government and the eventual adoption oflegislation through the Community Care (Direct Payments) Act 1996. The positioning oflegislation as an appendix to the Community Care Act meant that direct payments wereframed as an alternative mode of provision to that of directly provided services. Access to adirect payment was therefore to be organised by local authority social service departmentsthrough the same care assessment.

For the disabled people’s movement, a system of direct payments to enable the employmentof personal assistants at the control and discretion of individual users was always seen as criticalin challenging service-led care structures and pursuing independent living (Kestenbaum 1992).For successive Conservative and Labour administrations across the UK, support for direct pay-ments drew strongly on market discourses (Pearson 2000), whereby the empowerment value ofcash rather than services helped to promote the model of consumerism in social care. Indeed,the BCODP research (Zarb and Nadash 1994) found that cash payment schemes could be asmuch as 40 per cent cheaper than directly provided services and this was evidently attractive toadministrations seeking to cut public spending. Although this model was clearly important insecuring governmental support for the policy, it also undoubtedly contributed to the ‘postcodelottery’ which saw take-up for direct payments vary acutely throughout different parts of theUK (Priestley et al. 2010). While many local authorities in the south of England embraceddirect payments as part of a wider shift to consumerism in social care (Pearson 2000), in Scot-land, Wales and Northern Ireland such payments have been viewed with far greater suspicion.As we will see shortly, these perceptions framed the long-term direction of policy.

From 1997 to 2003 attempts were made by the respective devolved administrations toreignite policy, but uptake was very limited (Priestley et al. 2010). Policy development at thistime also recognised a more prominent role for disabled people and publication of the strat-egy document ‘Improving the Life Chances of Disabled People’ (Cabinet Office 2005)included leading disability activists in its authorship. Recognition of the importance of peersupport among disabled people was underpinned by the key pledge to ensure that every localarea had a CIL by 2010. Despite the importance of this pledge, it was never realised.

Even though the uptake of direct payments remained low, a growing political will toimplement personalised social care emerged more widely (Riddell et al. 2005). Under theLabour government (1997–2010) many of the themes that linked direct payments to theConservative’s broader agenda of marketisation were developed through the personalisationof social care services. This centred on promoting the role of users in service delivery andengaging them as co-designers of services. Personalisation also draws on wider global themes.Implementation of the National Disability Insurance Scheme in Australia, for example, presentsan important illustration as to how government has utilised discourses of individualisation toinstigate a major policy shift (Needham and Dickinson 2017). While direct payments wereintrinsically linked to the disabled people’s movement and independent living, the shift inpolicy discourse to personalisation instead focused more strongly on promoting a model ofconsumerism (Leadbeater, 2004), with related rights and entitlements. By now, social care wasfully devolved and progress with developing personalisation began initially in England and then

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followed elsewhere in the UK. Direct payments still remained available but were presented asonly one of a range of ways to achieve flexibility in social care support. As the followingsection shows, this agenda has been promoted differently across the UK.

In England, personalisation was formalised in 2007 and became firmly established withinsocial care through the Care Act 2014. By 2014 81 per cent of all people receiving com-munity-based services were supported by Personal Budgets (PBs) or Personal Health Budgets(PHBs) (ADASS 2014). These are monies allocated to individuals to support their health andwell-being needs, and are planned and agreed between the individual and his or her localNHS team. PBs or PHBs are provided as an ‘upfront’ allocation of resources (calculatedaccording to a resource allocation system) and are intended to provide an approximate indi-cation of the costs involved in meeting a person’s needs. The allocated PB or PHB may betaken in three forms: a direct payment to the individual; an indirect payment held by thelocal authority or an individual service fund held by a third party or organisation.

In Scotland, the poor take-up of direct payments led the Scottish government to refocuson the flexibility of cash-based payment models and its own version of personalisation – theSocial Care (Self-directed Support Act) (SDS) (Scotland) Act 2013. This was introduced bythe ruling Scottish National Party administration and the legislation formed the mainstreamof social care provision. SDS operates in a similar way to the English model of PBs byincorporating different support options. Option 1 is a direct payment; option 2, a selection ofsupport by the user, but arranged through the local authority or other agency on their behalf;option 3, support organised and provided by the local authority; or option 4, a mixture ofthese options (Scottish Government 2014). At the heart of SDS has been the promotion ofthe principles of co-production and partnership, with an emphasis on collective agreementfrom users and practitioners at all stages of theory and practice development (ibid. 2010). Yetto date research has indicated that SDS has yet to have a transformative effect on social carein Scotland (Audit Scotland 2017; Pearson et al. 2017), with low uptake of direct paymentsand near identical proportions using existing providers.

In Northern Ireland, Scotland’s model of SDS has been adopted as the policy framework.The drive to develop personalisation emanated from the earlier Transforming Your Care pro-gramme (Health and Social Care Board 2011), which emphasised broad support for increasedindividual control over budgets across health and social care reform. Phased implementation ofSDS began in June 2015 across the five health and social care trusts in Northern Ireland.

The Welsh government’s response to social care reform presents an important departurefrom the rest of the UK in that while the principles of choice and control are central, the terms‘personalisation’ and ‘self-directed support’ are notably absent. Instead, Welsh policy aims todeliver what are termed ‘citizen-centred services’. In both Wales and Scotland, local authoritieshave explicit duties to engage and promote with non-profit service providers. This could drawon support models used in Norway, where the user-controlled co-operative, Uloba, is a keysocial care provider for many disabled people (Christensen and Pilling 2016). Unlike the moreprivatised English social care market, the Welsh government’s direct rejection of market forcessuggests that new models of care and support for disabled people may follow (Clements 2016).

Isolation and independent living: taking the social out of social care

As suggested, the onset of austerity in the UK heralded the transformation of the frameworkof state support for disabled people. While the shift to personalisation in social care drew onpolicy discourses of choice and control, legislation across the UK came into force just asmajor spending cuts took hold (Pearson and Ridley 2017). By 2018 – ten years after the

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global financial crisis – social care budgets across the UK had been decimated and serviceshad reached crisis point (Equality and Human Rights Commission 2018). In shifting supportservices to cash-strapped care markets, disabled people have been required to access packagesfrom a mix of public, private and third sector organisations. For Mladenov et al. (2015) per-sonalisation has provided an ideological cover for austerity measures, as a means of achievingmore with less. This also came at a time when – as detailed earlier – the other main tier ofdisability support through the social security system had also been acutely reduced.

As Power and Hall (2017) note, these changes have had major consequences for individuals,families and local organisations, not only in terms of the cuts to services but also in terms of theloss of local collective spaces in communities, where disabled people can meet and engage withothers. Others such as Ferguson (2012) have described this as ‘enforced individualism’, as cutsto services and social spaces have left many disabled people increasingly isolated.

Discussion and concluding comments

This chapter has sought to unravel how the philosophy of independent living, developed over40 years ago, has manifested into support for disabled people through the UK social securityand social care systems. It shows that while there have been important victories and somepolicy shifts, successive governments have failed to provide a structure to enable independentliving for disabled people. Ten years after the global financial crisis, the targeting of austeritymeasures at disabled people has clearly led to a regression in the pockets of progress made inthe preceding years. Following on from the damming report on the UK government’s com-pliance with the CRPD (CRPD 2017), the Equality and Human Rights Commission reportedthat ‘more and more disabled people are finding it difficult to live independently and beincluded and participate in their communities’ (2018: 7).

The discussion has also highlighted key areas of disability policy divergence across the UK.This ranges from a reconfiguration of the ILF in Scotland and Northern Ireland to the Welshgovernment’s rejection of the language of personalisation and associated marketisation ofsocial care. The broader personalisation agenda has brought with it distinct approaches withregard to the positioning of the market and promoting partnership and co-production inservice planning. This opens up the possibility of using a more diverse provider base, withoptions to embrace a key role for non-profit organisations. However, this is not to detractfrom the acute funding crisis across social care, whereby the rhetoric of co-produced serviceshas limited meaning in the current funding environment.

More recent changes to devolved powers across the UK indicate a shift in focus to other areasof support, notably from the newly established Social Security Agency in Scotland. Underpowers set out in the Scotland Act 2016, 11 social security benefits have been devolved from theDWP to the new agency. This included PIP and DLA – both of which have been the subject ofsignificant criticism owing to the assessment process involved. As outlined above, one ofthe main criticisms of the assessment process has been the use of private agencies to carry outreassessments and the punitive approach associated with it. Under the new Scottish system,assessments will be run in-house by the new agency, rather than by private contractors, and willbe underpinned by principles of fairness, dignity and respect (Somerville 2018). The systemincludes a number of measures such as reducing the volume of face-to-face assessments, homevisits for those who have difficulty attending assessment centres, and mandatory audio recordingof assessments. While this may be a welcome change and more importantly will help to create aless hostile environment, no additional funds are being made available by the Scottish govern-ment to facilitate any improvements in the value of disability benefits.

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Undoubtedly the next major challenge for independent living in the UK – over the shortand longer term – will be the onset of Brexit. At the time of writing, the UK’s departure fromthe European Union (EU) was scheduled to take place in October 2019 and the terms underwhich the country will leave remain unclear. In their evaluation of the implications of Brexit,Lawson and Sayce (2017) argue that disability has barely been mentioned in the public andpolicy debate. Yet the potential impact on disability rights and independent living are wide-ranging. This covers a range of issues across social care, transport, access, housing, employmentand law. For example, the European Social Fund has provided considerable support to financea range of schemes for disabled people, such as help with work experience, wage subsidies andsupport for self-employment. There is also concern that thousands of regulations and rulesgoverning the design, functionality and usability of almost every product and object in thehome and general environment and which contain elements of disability-related considerationmay be disregarded in a bid to promote greater ease of corporate competition or free trade.Funding for disabled peoples’ organisations also looks vulnerable, particularly in parts of the UKsuch as Northern Ireland where EU funding has been core to much of their work. In socialcare, the importance of being able to employ personal assistants from other European Eco-nomic Area countries remains precarious. This, in turn, has major implications for the ability ofmany disabled people to remain in their own homes. While these issues are likely to remainunresolved, it is difficult to give an optimistic appraisal of Brexit from a disability perspective.

In conclusion, this chapter has outlined the very problematic policy terrain for disabledpeople to achieve independent living. It is difficult to reconcile the adoption of the CPRD in2008 and the promotion of Article 19 on independent living within the shift to an increasinglyhostile social policy agenda. As Kanter’s (2015) work earlier in this chapter acknowledged,these global statements can only become meaningful if underpinned by socio-economicconditions which frame independent living. Rather than build on the successes achieved bydisability activism around civil rights and access to more flexible social care in the late 1990sand early 2000s, during the past decade successive governments have dismantled supportand marginalised the voices of disabled people.

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21

DIAGNOSIS AS SOCIAL PRACTICEAND THE POSSIBILITY OF

INTERRUPTION

Scot Danforth

Introduction

This chapter will examine diagnosis in three forms that occur roughly as temporal phases ineveryday life: as a scientific construct; a social practice; and a political product. A diagnosisthat operates with social legitimacy is initially built as a scientific distillation, an idea refinedthrough the theories and research practices of a human science such as medicine or psychology.The initiation of a construct built of theory and empirical science takes place among researchersattempting to bring explanatory order to what they view as a puzzling and troublesomearea of human activity. When the scientific construct is then put into practice by one ormore professions, it becomes a social process of discernment, an interactive and symbolicactivity carried out under certain circumstances. The social practice of diagnosis is a culturalway that authoritative professions and institutions assign meaning to specific aspects of humanbodies and behaviour that are interpreted as deviant or problematic. After the social process ofdiagnosis concludes and a diagnosis has been rendered, the diagnosis often lives on as an arrayof lingering, continuing social consequences in the life of the diagnosed person and loved ones.The political product (or label) is the medicalised designation that attaches to the diagnosedindividual either within the boundaries of institutional and organisational activities or, in somecases, depending on the social valence and stigmatic imprint of the diagnosis, across many or allof the spheres of action and interaction that make up the labelled person’s life. This multi-phased combination of the scientific birth, the social process of diagnosis, and the stigmatisedidentity continuing in the life of the diagnosed person constitute what might be called thecareer of a diagnosis, the full run of differential meaning and political valuation.

The primary strategy taken in this chapter arises from a set three scholarly works by Dan-forth (2009), Conrad (1975, 1976), and Davis (1963) that offer insight into the career of adiagnosis. The question of how a diagnostic construct as a trusted scientific explanation forsome form of human difference or deviance by a profession or set of professions is born isexplored in my own historical research on learning disabilities (Danforth 2009). Conrad’s(1975, 1976) sociological study of a child hyperactivity clinic examines the question of how adiagnostic construct is interpreted and employed in the complex of social interactions, com-munications, and judgements by medical, psychological, and other professionals. Davis’s

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(1963) study of how parents and families navigate the initial diagnosis and treatment of theirchild for polio pursues the question of how a variety of social and political meanings of adiagnosis might unfold gradually over weeks, months, and even years. The combined analyticframework of the three studies allows for some scrutiny of the multiple phases of its culturalcareer, from its scientific birth to its utilisation by professionals, and on to its emotionalmeaning in the lives of diagnosed persons and their loved ones.

The conclusion of this chapter turns more explicitly to the political and personal ramifi-cations of stigmatised disability diagnoses by mining the writings of scholars who participatedin a 2014 ‘Diagnosis Interrupted’ conference at George Washington University, USA.Authors of these essays, narratives and poems enact a range of creative and counteractivestrategies to ‘interrupt monologic medical diagnosis, claiming space to compose themselves’(Wilkerson et al. 2016: 473). The conclusion briefly examines how disabled persons contendwith devaluing diagnoses in order to craft identities and create lives that refuse to be subsumedunder the notions of defect, deficit and devaluation.

Developing a diagnostic construct

The purpose of this section of the chapter is to explore how a disorder or syndrome isdeveloped and born in the activities of social scientists. By focusing specifically on the historyof the learning disability construct, this section examines the intellectual work that makes adiagnosis scientifically legitimate.

My historical study of the development of the scientific basis for the learning disability, aneuropsychological construct explaining why some children (and, later, adults) struggle tolearn academic knowledge and skills, delves into the social making of a diagnosis (Danforth2009). Before any professional can diagnose a disorder, disease or syndrome, the constructitself must be developed by psychological or medical researchers until it achieves a sufficientdegree of support within the scientific community. How that consensus forms around acommon theoretical and empirical description of an aspect of human activity is the historicaland cultural achievement of the birth of the diagnosis, building the conceptual and practicalbasis from which all subsequent activities of professionals involved in social processes ofdiagnosis emanate. The diagnostic construct can further shift and change after it is born. Agood example is the gradual morphing of the singular autism into a broad spectrum of relateddisorders in recent decades. But all diagnoses initiate with some kind of scientific research anddevelopment that builds an explanatory construct that gains consensus.

Currently, a learning disability is often defined as a neuropsychological condition thatlimits specific cognitive processes of learning and communication in a person whose intel-lectual capacities are considered to be otherwise unimpaired. In an oversimplified sense, it isan explanation for a failure of adequate learning by an individual whom professionals wouldexpect to reach at least an average degree of academic success. Although the story of the birthof the learning disability construct combines the holistic psychological theory and research ofearly twentieth-century Germany with the pragmatic, functionalist psychology of the mid-century United States, the construct is a distinctly American phenomenon, attaining thethreshold of legitimacy among American clinicians and educators in the late 1960s and early1970s. It achieved full social legitimacy, leaving the scientific community for implementationin the public schools, when it was incorporated into the 1975 federal law mandating theeducation of all children with disabilities in the United States. That law required that publicschools make decisions about disability services qualification based on a series of categoricalimpairment diagnosis, including learning disability. Currently, the learning disability diagnosis

Diagnosis as social practice

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remains salient in the United States because it constitutes the most common disability labelemployed for eligibility and instructional purposes in the public schools. It is similarly utilisedin the adult system of vocational rehabilitation as both a disability type that qualifies a personfor services and an impairment to be addressed through those services.

It is difficult to locate a precise moment in history that initiated the development of thescience of learning disability. Similarly, to identify a single, clearly identifiable human need orsocial problem as the practical need from which the goals, practices and findings of earlylearning disabilities researchers sprang is impossible. Unlike the nineteenth-century scientificsearch for the type of bacteria that caused tuberculosis (Ott 1996; Rothman 1994) or theMarch of Dimes quest for a vaccine to eradicate the polio virus in the early 1950s (Oshinsky2005), the history of the learning disability reads like an ex post facto tale of multiple arrowsflung from different bows landing on single target. A reader assuming that the construct wascreated to resolve a clearly identified human problem will be sorely disappointed.

One might say that the formulation of the construct first began in 1929 when a psychologygraduate student named Samuel A. Kirk – the man who would decades later be known as the‘father of learning disabilities’ (Chalfant 1998: 3; Minskoff 1998: 20) – tutored a ten-year-oldboy in an Illinois institution. The boy was known to be (in the terms of the day) a mentaldefective, a person with a general condition of intellectual limitation, a child viewed by themedical and psychological knowledge of the era as completely uneducable. It was no wonderthat Kirk taught the boy to read at night, in the bathroom, when no one would notice hisfoolish activity. The naïve Kirk’s unfounded assumption was that some children assumed dueto mental defect to be wholly beyond the reach of instructional enhancement could actuallybenefit from teaching. This theme of searching for and attempting to explain hidden intellectualpotential among children deemed cognitively barren, completely absent of learning capacity,fuelled the scientific work that developed the learning disability construct.

Kirk went on to work as a research assistant under Thorleif G. Hegge at the WayneCounty Training School, an institution for persons with mental retardation in Northville,Michigan. Hegge hired a trio of researchers – Alfred A. Strauss, Laura Lehtinen, and HeinzWerner – who challenged the common knowledge that children who failed to learn inschool were either stupid or lazy. The former notion was enshrined in intelligence testingand the science of mental defectiveness. The children with low IQ scores who lived at theWayne School were viewed by most people as having a general condition of mental deficiencythat impacted all areas of brain activity.

The Wayne School researchers pursued empirical studies along two theses that challengedmainstream psychological and educational thought. First, they agreed with the findings of theIowa Child Welfare Station researchers Beth Wellman, Harold Skeels and director GeorgeD. Stoddard that intelligence itself was malleable, that environmental conditions and, morepointedly, teaching could actually raise the intellectual level of children. This psychologicalstance, often called environmentalism, was gradually gaining support in the research com-munity in the 1930s as Wellman, Skeels and others produced empirical evidence.

Second, drawing on the German tradition of brain injury research developed by the neu-rologist Kurt Goldstein, they did not view the mind or mental activity as unitary. That is, theyassumed that a person could be highly capable in some areas of cognitive activity while func-tioning at lower, even subnormal levels in other areas. Mind, in this tradition, was multiple. Asa result, what they searched for among the institutionalised population of supposedly mentallydefective children was a definable population whose mental impairment was only partial,whose identifiable areas of cognitive limitation coincided with areas of mental functioning thatwere quite typical.


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By 1940 the Wayne School researchers had developed what was known as the Strausssyndrome, ‘a definite sensori-motor syndrome characterizing the brain-injured, mentallydefective child’ (Strauss and Werner 1941: 1198). Werner and Strauss (1941) cooperated on anumber of studies that discovered a group of children who exhibited a ‘disturbance of fore-ground-background relation’, a distinctly neuro-sensory disorder resulting in an inability tospatially distinguish between objects in the foreground in relation to the background envir-onment. They concluded that some children have a brain injury of undetermined origin thatcauses sensory misperception resulting in learning difficulties.

The Wayne School research influenced two distinct formulations of the brain injuryhypothesis in the 1960s, one emphasising the totality of the human body and central nervoussystem, and a second focusing primarily on psychological processing of symbolic and linguisticinformation. The former research tradition followed the Strauss-Werner findings more closely,theorising that the child’s entire neuro-bodily apparatus misperceived environmental stimuli.Raymond Barsch, Marianne Frostig, Newell C. Kephard and Gerald N. Getman developedmovement education programmes that treated the underlying neurological disorder with bodilyactivities and perceptual development tasks. The language-focused research strand was led byKirk. He developed the Illinois Test of Psycholinguistic Abilities as the centerpiece of anapproach to assessing how the brain manages linguistic content. This strand of research con-tinued Kirk’s emphasis on reading disorders by theorising the existence of brain-based deficitsin the acquisition, storage, comprehension and retrieval of linguistic information.

The two strands of early learning disability research were clinical approaches that generallyviewed diagnosis as a holistic activity leading immediately and most importantly to effectivetreatment. Diagnosis was only useful to these clinicians as the initial portion of a professionalpractice of intervention designed to ameliorate the neurological syndrome. While theyemployed a combination of quantitative instruments and clinical observations in the diagnosticprocess, the goal was not so much a precise determination of the presence of the disorder as thecreation of a personalised programme of treatment. The various researchers did not even agreefully on the definition of learning disability construct.

This clinical, practice-driven approach to learning disabilities was transformed beginning inthe late 1960s with intense parental pressure and the writing of federal legislation mandatingcategorical special education. National and local media attention on what appeared to begroundbreaking work by the learning disabilities researchers fuelled parental interest in diag-noses and treatment for many children struggling to learn in school. Parents of students failingin American schools gravitated towards the brain injury research hypothesis and pressed theresearchers for a clear formulation, a single, unambiguous diagnosis. Simultaneously, Kirkworked closely with other educational leaders and federal legislators to incorporate the learningdisability construct into what would become the 1975 Education of Handicapped ChildrenAct. The definition of learning disability was developed by a committee led by Kirk. Thespecific formulation of the disorder was enshrined in law for use by all schools in the UnitedStates. This act that shifted diagnostic processes away from the clinical flexibility of theresearchers to a more bureaucratic system of service eligibility employed by the public schools.

The history of the scientific development of the learning disability diagnosis illustrates how aseries of concepts and formulations used in different research programmes can be gathered andpackaged together into a consensus-based disorder construct under the sway of social pressure.Furthermore, this demonstrates how a diagnosis can be utilised for two distinct purposes. Theresearchers operating in the two different brain injury traditions viewed diagnostic activitymostly as a process of gathering psychological and neurological information in order to tailor atreatment programme to the child’s specific neuropsychological profile. Making a definitive


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decision that a child either has or does not have a learning disability was de-emphasised amongthe early researchers. But once the learning disability construct was delivered in a final, insti-tutionalised form to the public school system, the priority of diagnostic activity shifted to adefinitive declaration. The public school special education system was (and is) a bureaucracythat allocates funding and services based on precise determinations of eligibility.

Diagnosis as social process

The goal of this section of the chapter is to investigate how a diagnostic construct built byscientific researchers is translated into a useable diagnostic procedure leading to differential pro-fessional decisions. By focusing specifically on the early practical implementation of hyperactivity,the precursor to attention deficit hyperactivity disorder, this section explores the interactions,negotiations, and communications occurring in the social process of diagnostic work.

Peter Conrad (1975, 1976) studied a childhood hyperactivity diagnosis clinic located in aprestigious hospital at the historical moment when the now widely utilised psychiatric diag-nosis attention deficit hyperactivity disorder (ADHD) was gaining initial support, credibilityand employment among medical practitioners. Parents troubled by their child’s behaviour athome or by persistent teacher reports of problematic school behaviour brought their childrento the clinic. They sought answers, explanations for what appeared to be unusual activity.But even more, they wanted solutions to the behaviour difficulties that caused disruptions inhome and school life.

Conrad’s ethnography fully displays how a team of mental health clinicians gathered avariety of data, sorted through and made sense of the data, and ultimately made diagnosticcase decisions about who had a hyperactivity disorder and who did not. The process involveda team of professionals making judgements, communicating with one another, focusingheavily on certain types of data while all but ignoring others. The culture of the clinic valuedspecific forms of communicating, information and activity in what the professionals knewwas a medically awkward challenge of diagnosing a brain-based dysfunction of neurologicalfunctioning based greatly on the second and third-hand behavioural descriptions of parentsand teachers. Undoubtedly, they conducted a complete physical and neurological examina-tion of the child. But more often than is the case today their task was to render a medicalverdict from communications about social behaviours, and from listening to parents recountincidents occurring at home and at school.

Many of the professionals were aware of and were humbled by the fact that this diagnosticwork pushed them to investigate beyond the limits of their medical training. They werehighly knowledgeable in the biological operations of the human body, of the brain and thecentral nervous system. This diagnostic work often ventured past the objective reality ofmatter, of bodily functioning, to issues of social conflict, childhood misbehaviour, familydynamics and the interactional space of school classrooms. Frequently, their primary datawere spoken words about what was observed in locations that the physicians had not visitedand had not witnessed. Conrad observed that ‘behavioral and developmental reports from theparents and behavioral and achievement reports from the school … are seen as crucial to theevaluation’ (1976: 55). The data were indirect, passed down from memory and rehashedfrom prior teacher-parent communications. Not surprisingly, the physicians often felt ‘likeducks out of water trying to interpret’ the non-medical information (ibid.: 56).

Foundational to all the activity of the clinic were three enduring and powerful facts. First,the parents wanted to solve the identified behaviour problem. They wanted their child tobehave as other children did, or to behave in ways that did not disrupt home or classroom


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life. Accompanying this desire for problem resolution – for an effective cure – yet unde-niably lower in priority was a need for an authoritative explanation of the problem, a validscientific proclamation of what was wrong. This lesser but present desire aligned with thesecond fact. The primary goal of the professional team in the diagnostic process was torender a human situation of disorder and ambiguity into a situation of medical clarity andprecision. Central to the job was the goal of ‘minimizing uncertainty’ in a decidedlycomplex and nebulous situation, sorting the puzzle pieces into the order and neatness of adiagnosis (Conrad (1976: 66).

The third fact was unearthed by Conrad (1975) in a second paper exploring the historicalroots of the creation of what would become known as ADHD. Present at all times in theback of the minds of the professionals was the one powerful medical tool that made the clinicand the diagnosis both possible and useful. While the diagnostic team dutifully produced anextensive case report detailing all the data collected and the various developmental, neuro-logical and psychiatric analyses, their work was driven by the efficacy of their primary pre-scriptive tool, methylphenidate or Ritalin, the central nervous system stimulant that wasquickly becoming the cornerstone of both hyperactivity treatment and of the disorder itself.

Conrad (1975) argues quite compellingly that the diagnosis did not spawn the treatment.On the contrary, in the case of hyperactivity, the researched effects of the medication onchildhood misbehaviour provided the basis for the formulation of the diagnosis. In fact, themedical professionals at the clinic had to repeatedly remind themselves not to simply leap pastthe intensive data collection and investigation phase to the almost inevitable conclusion ofwriting a methylphenidate prescription. They maintained a common mantra to not diagnosethe condition by giving the child a trial of the medication. Yet, ultimately, it was the powerof the psychostimulant that brought parents to their clinic and gave their diagnosis ofhyperactivity social meaning and relevance. Without Ritalin, there would be no clinic andno diagnostic work.

The example of Conrad’s social analysis of a hyperactivity clinic proffers insight into the pro-cess of diagnosis as what might be called a muddy scientific ritual. The procedures are social,involving the interactions, communications, judgements as well as doubts and misgivings oftrained medical and psychological professionals. The uncertainty and ambiguity of the work –

the muddiness – both renders the diagnosis more doubtful and makes the ritualised process see-mingly more necessary. By carrying out a standard array of medical and psychological assessmentactivities and producing a case report upholding the rhetorical tradition of psychiatric case writ-ing, a level of certainty and epistemic stability was achieved in the final disposition. Certainly,some families experienced a degree of relief in the social act of naming the problem even if thediagnosis did not lead to behavioural improvement. The process itself, as with all rituals, movedthe situation from one state of understanding to another, from one set of social meanings toanother. In this case, the final result was an authoritative explanation of childhood behaviourstripped of the uncertainty and questions that initially drove the parents to seek out the clinic.

Diagnosis as political product

The purpose of this section is to analyse how a diagnosis often remains active after thediagnostic process, continuing as a label, a designation of enduring social status, in the lives ofdiagnosed persons and families. Although this exploration is limited to the short-term influ-ence occurring within the first 24 months of polio diagnosis, it demonstrates how childrenand families struggle to make sense of a dreaded diagnosis often associated with bodily death,paralysis and tremendous social devaluation.


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Davis (1963) followed eight boys and six girls and their families from the first signs ofpossible illness through hospitalisation, the confirmed diagnosis of poliomyelitis, treatmentand initial hospital rehabilitation. His study tracked the emotional carnival ride of emotions,hopes, disappointments and coping mechanisms taking place within the early stages of thedevelopment of a disease that, at the time of the study (1954–1955) often resulted in deathor permanent paralysis. Unlike the examples of learning disabilities and hyperactivity scru-tinised so far, the physiological activity of a bulbar polio infection on the central nervoussystem and muscles was well understood by physicians. And there was a definitive diag-nostic procedure, an examination of spinal fluid for the infection agent, that resulted inmedical clarity. The human drama in this study was the gradual unfolding of the degree ofparalysis given the remote possibility of a complete or near complete physical recovery. Acase of polio might result in a slight limp, or it can rob the child of the capacity to moveany of his or her muscles, including those necessary for respiration. The parents and thechildren in this study, often working with very incomplete information due to poor com-munication from the medical staff, waited up to two years to discover the full bodilyimpact of the infection.

For purposes of this chapter, the focus is Davis’s examination of how the children and theirfamilies confronted ‘the problems of identity’ (1963: 138), notably the practical decisions aboutwho to be in light of the loss of functional and aesthetic characteristics often considered normalin everyday life. Davis enumerated three specific ‘alternative courses, or stratagems’ of identitymanagement available to the diagnosed persons and their families (ibid.: 139). In exploringthese three paths, it is important to remember that Davis wrote before the modern disabilityrights movement in the United States. In a sense, he presents the psychosocial alternativesavailable to a person with a significant mobility impairment that were rejected by disabilityrights activists as they pushed for and demanded more of their society. One might theorise thatthe disability rights movement opened up some opportunities for other, more self-valuingidentities beyond the scope of Davis’s trio of identities.

The first stratagem employed by the polio patients and their families was ‘(a)ccepting“normal” standards and wishing to be viewed in terms of them’ (1963: 139). Davis describedthis approach as similar to what race/ethnicity researchers have observed as ‘passing’, anactivity of hiding visible markers of abnormality in order to appear to others as a person whodid not lose physical functioning due to polio. An example is a boy in the study who refusedto wear his leg brace in his effort to disguise his limp. As a result, he suffered a fall and brokethe impaired leg. One day, while wearing the cast, a cab driver asked him if he had brokenhis leg while playing football. His mother replied that was exactly what happened. After theson and mother exited the taxi, the boy told his mother how pleased he was that his motherhad not told the driver about the polio.

A second stratagem is what Davis called ‘normalization’ (1963: 140). This approachsimultaneously admits that the child is somehow different from other children while alsodeclaring that this difference is insignificant enough to fall under the social category ofnormal. The difference is more of the nature of blue eyes versus brown eyes, and does notrefer to political categories of value, as well as actions of social acceptance and rejection. Thephilosophy is: ‘Though I may appear to be different, I really am not. Not only do I think ofmyself as normal, but others think of me as normal, too’ (ibid.: 140).

While the first two stratagems involve an attempt to remain within the social communitythrough a path of identification with current social norms, the third alternative is an act ofresignation to social rejection. ‘(D)isassociation generally involves some significant relinquishingof the normal standard’, a falling away from the community and social norms in an act of


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isolation (Davis 1963: 140). A devalued, lesser social identity is accepted as unavoidable underthe circumstances, and the result is active retreat and isolation from the community.

None of these three alternatives develops a serious critique of the social norms of thecommunity, of the ways that notions such as normal are created, maintained or utilised bythe community. Each of these is politically conservative, accepting the status quo as anunassailable and impermeable reality beyond modification by human intention and action.These children and families experienced the immovable weight of the label and the absolutequality of the social complex of what was assumed to be normal with such force that thecreative development of alternative identities was beyond the question. Their 1950s acriticalacceptance of social norms despite the discomfort and suffering they caused the diagnosedchild leads us to ask how labels might be actively rejected or reformulated to make life moreliveable and just.

Interrupting diagnosis

Ed Roberts was a man with polio who entered the University of California, Berkeley, in1962. He was housed in Cowell Hospital, a medical facility on campus, because the dormi-tories were inaccessible to his wheelchair and the rooms were too small for the enormousiron lung that he slept in. The following year Roberts was joined by John Hessler, a very tallyoung man who was paralysed in a diving accident. Over the next six years, the Cowellresidence became an ersatz disabled student dormitory, attracting men and women withparaplegia and quadriplegia to attend the university for the first time. For most, the oppor-tunity to go to the University of California, with financial and professional support from theCalifornia Department of Rehabilitation, was their only chance of escaping a life of isolationin nursing homes, county hospitals and the childhood bedrooms of their parents’ homes.Roberts and Hessler, on campus pursuing graduate degrees, were the elder statesmen of thegroup named the Rolling Quads at the start of Berkeley’s explosion of disability activism.

What was perhaps most remarkable about the lives of the physically disabled students was theway they created a micro-community of support, friendship and experimentation that openedthe door to the creative making of life pathways beyond Davis’s three stratagems. They effec-tively helped one another to set aside traditional considerations of normal and abnormal in orderto accept disabled bodies as legitimate, valuable, useful and loveable. What they began in theirfriendship group became central to the critical mission and countercultural power of the disabilitycommunity during the decades of the American disability rights movement (Danforth 2018).

The possibility of overturning the hegemony of normal in order to perhaps compose anon-normative self was the theme of the 2014 ‘Diagnosis Interrupted’ conference at GeorgeWashington University. The final section of this chapter is devoted to exploring and learningfrom the creative and scholarly writing that interrupts diagnostic solidity, stability andoppression with what Anna Cvetkovich calls ‘alternative ways of moving in the world(Cvetkovich and Wilkerson 2016: 498). Notably, the non-professional interventions sug-gested by these conference papers veer sharply from the staid conformity of Davis’s threestratagem analysis, pursuing critical and personal epistemologies of greater everyday hope andpracticality.

In her creative and collective reframing of the clinical syndrome of depression, Cvetkovichexplores the possibilities of ‘opting out of normative modes of being’ by pushing aside theassumption that medical authorities have the final expertise on how to fashion a liveable pathin a human body (Cvetkovich and Wilkerson 2016: 500). She challenges the standardassumption that this human experience of deep sadness is a mental illness located in faulty


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brain chemistry by shifting from clinical terms to personal and political vocabulary. She usesthe more everyday personal expression ‘feeling bad’, finding that experience both within thesimple rhythms of daily activity and human positioning beneath oppressive histories andstructures of capitalism that fail to support dignity and flourishing. Ultimately, her goal is tofacilitate not only movement beyond the oversimplification of diagnostic categories but thelarger goal of ‘creating cultures that allow people to find the things they need in order toboth survive in the world as it is and change the world’ (ibid.: 501).

Hsy’s essay on medieval discourses of deafness furthers the theme of identity and self asrelational and cultural by posing the provocative but utterly practical question: ‘Rather thancuring deafness through codified medical practice, might the world instead entertain a col-lective adaptation to deaf lives?’ (2016: 479). This analysis springs from the insight thatmedieval (and contemporary) understandings of language and communication privilegespoken symbols of meaning over visual expressions, resulting in the social convention oflocating communication failure in the auditory functioning of deaf persons and not thehegemonic oral communication modality. Additionally, the medical framing of deafness as aloss of hearing, as an individual condition of absence and lacking, fails to attend to whatscholars now call deaf gain. Hsy explains,

(D)eafness affords modes of perception (visual and kinetic) that are true assets. In thislight, the cultural assumption that normative forms of bodily form and activitysupply the, to put it simply, best ways of experiencing life, crumbles when therichness of ‘silent lifeways’ are appreciated on their own terms.

(2016: 483)

Perhaps poet Kenneth Jacobs’ concise but capacious phrasing ‘a making preempting myself’best captures the cultural and medical armament that confronts the identity of the labelledperson. The participants in Davis’s 1950s polio study, living in the United States during an eraof dull consumerism and unhesitating social conformity, had only three cultural options fordealing with the dire polio diagnosis and the constrained polio victim identity given to them bythe hospital staff and the larger society. The social eruption of the 1960s counterculture and thedisruption of the disability rights movement that grew from its midst made available the freshterrain explored by the 2014 ‘Diagnosis Interrupted’ conference authors. Noticing this culturaland epistemological shift does not deny the fact that disability diagnoses even today often hanglike Jacob Marley’s chain around the necks of labelled persons. Finding a practical way free ofthe thin determinism and under-imagined existences proposed by diagnostic terminology isprecisely the challenge available during this era of the continuing disability rights movement.

In my own historical research on the origins of the learning disability construct, I described thecommon, public school understanding of the child with a learning disability as ‘a two dimen-sional cut-out character … a reified stereotype of who the child with a learning disability is aswell as what that crudely crafted character cannot do’ (Danforth 2009: 15). My concern was thatthe diagnosis described a human and a humanity in a vocabulary so desiccated, undernourishedand over-pronounced that the richness, variation and raw possibility of what a person might doand be was ignored. Beneath the diagnosis, at worst, there were no people, and there was no life.Concluding this chapter with that worry, especially in light of the creative and compelling pro-posals issued by the ‘Diagnosis Interrupted’ authors, implores us as active participants in culturalinterpretation and the daily making of community to ask how we individually and collectivelycontribute to making and remaking social identities of both devaluation and valuation, ofparticipation and isolation, of rich possibility and pre-empted void.


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References

Chalfant, J. C. (1998) ‘Why Kirk Stands Alone’, Learning Disabilities Research and Practice 13: 2–7.Conrad, P. (1975) ‘The Discovery of Hyperkinesis: Notes on the Medicalization of Deviant Behavior’,

Social Problems 23: 12–21.Conrad, P. (1976) Identifying Hyperactive Children: The Medicalization of Deviant Behavior, Lexington, MA:

Lexington Books.Cvetkovich, A. andWilkerson, A. (2016) ‘Disability and Depression’, Journal of Bioethical Inquiry 13(4): 497–503.Danforth, S. (2009) The Incomplete Child: An Intellectual History of Learning Disabilities, New York: Peter Lang.Danforth, S. (2018) ‘Becoming the Rolling Quads: Disability Politics at the University of California,

Berkeley, in the 1960s’, History of Education Quarterly 58(4): 506–536.Davis, F. (1963) Passage through Crisis: Polio Victims and Their Families, New York: Bobbs-Merrill.Hsy, J. (2016) ‘Symptom and Surface: Disruptive Deafness and Medieval Medical Authority’, Bioethical

Inquiry 13, 477–483.Minskoff, E. H. (1998) ‘Sam Kirk: The Man Who Made Special Education Special’, Learning Disabilities

Research and Practice 13: 15–21.Oshinksy, D. M. (2005) Polio: An American Story, Oxford: Oxford University Press.Ott, K. (1996) Fevered Lives: Tuberculosis in American Culture since 1870, Cambridge, MA: Harvard University

Press.Rothman, S. M. (1994) Living in the Shadow of Death: Tuberculosis and the Social Experience of Illness in

American History, New York: Basic Books.Strauss, A. A. and Werner, H. (1941) The Mental Organization of the Brain-Injured Mentally Defective

Child’, American Journal of Psychiatry 97: 1198.Werner, H. and Strauss, A. A. (1941) Pathology of Figure-Background Relation in the Child’, Journal of

Abnormal and Social Psychology 36(2): 247.Wilkerson, A., Fisher, J. and Fletcher, W. (2016) ‘Composing Disability: Diagnosis, Interrupted’, Journal of

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22

BOUNDARY MAINTENANCE

Exploring the intersections ofdisability and migration

Nicola Burns

Introduction

Migration is one of the defining issues of the twenty-first century. A globalised world hasfostered mobile populations, whose members respond to a range of push and pull factors intheir decisions to leave their countries of origin. Within migration studies, some have arguedthat migration in the twenty-first century is defined by ‘superdiversity’ (Vertovec 2007).While migration studies has given little attention to disability, disability studies scholars haveconsidered the lives and experiences of disabled migrants across the globe. This chapter willintroduce some of the key issues concerning disability and migration. The chapter focusespredominantly on research in the global north and international migration. In doing so, itoffers a partial view of migration, an issue returned to in the conclusion. The chapter doesnot focus explicitly on a particular impairment group. Many migrants may experience mentaldistress as a result of the migration process and their lives as migrants, an issue which has beengiven greater attention in health research than various other impairments (Abubakar et al.2018). Throughout the chapter, two issues familiar to disability studies arise within the con-text of migration: the dominance of the biomedical model and resulting conflation of healthand disability within administrative systems; and the construction of disabled people as aburden on society.

The chapter begins by situating our discussion in what we know, and, importantly, whatwe do not know about migration and disability, and introduces some of the complexities ofmigration in what is a conceptually and methodologically contested area. The chapter con-siders the ways in which discussions about disability and race can assist us in thinking aboutdisability and migration, highlighting the need to recognise the multiple identities andresulting oppressions experienced by disabled people at the intersection of gender, ethnicity,class, sexuality and migrant status.

The chapter considers past immigration policies of countries in the global north, exploringthe construction of disability and their impact on disabled people in present times. Attentionwill then turn to the ways in which ableist immigration policies have sought to limit disabledpeople’s mobility throughout recent history. The chapter considers disabled migrants’experiences of realising their social, economic and cultural rights through access and

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navigation of services and the disabling barriers they encounter. The conclusion summarisesthe key themes emerging from the chapter and reflects on silences, considering key questionsfor future work in this area.

A mobile world: migration in the twenty-first century

People are on the move, with an estimated 258 million international migrants in 2017,representing 3.3 per cent of the global population (IOM 2018). Of this number, 150 millionare migrant workers (ibid.). The number of forcibly displaced persons throughout the worldhas swelled to 65.8 million, comprising 40 million internally displaced persons, 25 millionrefugees and three million asylum seekers (UNHCR 2018). It is estimated that 80 per cent ofthe world’s forcibly displaced populations live in the global south (ibid.). Meanwhile, thereare currently an estimated 50 million undocumented migrants in the world (IOM 2018).Modern slavery, including those in forced labour, forced marriage and human trafficking,affects an estimated 40.3 million people globally, and this has a profound impact on themental and physical health of this group (Zimmerman and Kiss 2017; International LabourOrganization 2017).

Data on migration are notoriously difficult to generate and are methodologically challen-ging due to differences in the availability and comparability of data (IOM 2018; Andersonand Blinder 2017). There are definitional complexities in determining who is a migrant(ibid.), as no legal definition of migrant exists (IOM 2018). In recent times definitional sub-tleties have enabled political and media commentators to use terms interchangeably, elidingmigrant groups and statuses in order to support anti-migrant sentiment (Philo et al 2013). Table22.1 provides key migrant statuses and terms. While such definitions are helpful in determininglegal status, process and (predominant) reasons for migrating, differing entitlements and rights tocitizenship, services and employment, migration studies researchers observe the ways in whichan individual can over time change his or her status, for example from economic to irregularmigrant to asylum seeker (Vertovec 2007). Policy shifts by governments have real worldimplications for migrants, as we explore in the next section. Alongside this diversification inmigrants and their countries of origin/reception, writers have observed an increasing diversitynot only in migrant flows, but also in relation to legal status, and identity markers such asgender, ethnicity, sexuality and age.The demographic profile of migrants has changed considerably over the past three decades.In 2017 women accounted for 48 per cent of all international migrants while 13.9 per cent ofall international migrants were aged 18 years or younger in that year, and over 11.7 per centwere older persons (Migration Data Portal 2018). Migration trajectories have also diversified,with people moving to a greater number of countries than previously (Vertovec 2007).Superdiversity identifies a key difference in contemporary migration from past migration(ibid.; Meissner and Vertovec 2015). Superdiversity is defined as ‘distinguished by a dynamicinterplay of variables among an increased number of new, small, scattered multiple origins,transnationally connected, socio-economically differentiated and legally stratified immigrants’(Vertovec 2007: 1024).

In line with other international conventions supporting migration, Article 18 of theUnited Nations Convention on the Rights of Persons with Disabilities (CRPD) supports thefree movement of disabled people to leave their country. We do not know how manydisabled persons are migrants. Using the World Health Organization definition of disability andfigures from the World Report on Disability (WHO and World Bank 2011) we can estimate thataround 38 million international migrants are disabled.

Disability and migration

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Over the past decade there has been an acknowledgement of the presence and prevalenceof disabled people in forced migration situations. Of 65 million forcibly displaced people,around 10 million are estimated to be disabled, with almost 1.9 million having a severedisability (IOM 2018; Crock et al. 2017). Disabled refugees are recognised as ‘vulnerablepersons’ under the 1951 UN Refugee Convention (Straimer 2011). Article 11 of the CRPDrelates to humanitarian emergencies and recognises that at such times disabled people areoften those who are most at risk (Pisani and Grech 2015 and Berghs 2015). Recognition ofthe need for disabled people to be protected in humanitarian situations was given in the 2010UNHCR Executive Committee Conclusion on Refugees with Disabilities and Other Per-sons with Disabilities Protected and Assisted by UNHCR focusing on a rights-basedapproach (Pearce 2015). Where there is conflict there is impairment, with a recent reportestimating that around 30 per cent of those fleeing the ongoing Syrian conflict have someform of impairment (Handicap International and HelpAge International 2014). Mostafa’s(2015) first-hand account of fleeing this conflict illustrates the particular difficulties (such aslack of medication and the physical challenges of travelling) encountered by disabled peopleand those with chronic conditions as they attempt to leave conflict zones.

Despite the CRPD requiring states parties to collect data on persons with disabilities toensure that the appropriate level of support is provided for disabled people, a lack of data atthe national and international level has been identified as an issue in relation to migrationdata (Committee on the Protections of the Rights of All Migrant Workers and Members ofTheir Families and Committee on Rights of Persons with Disabilities 2017; European Union

Table 22.1 Key migration terms

Asylum seeker A person who seeks safety from persecution or serious harm in a countryother than his or her own and who awaits a decision on the application forrefugee status under relevant international and national instruments.

Forced migration A migratory movement in which an element of coercion exists, includingthreats to life and livelihood, whether arising from natural or man-madecauses (e.g. movements of refugees and internally displaced persons as well aspeople displaced by natural or environmental disasters, chemical or nucleardisasters, famine, or development projects).

Labour migration Movement of persons from one state to another, or within their owncountry of residence, for the purpose of employment.

Migrant Any person who is moving or has moved across an international border orwithin a state away from his or her habitual place of residence, regardless of(1) the person’s legal status; (2) whether the movement is voluntary orinvoluntary; (3) what the causes for the movement are; or (4) what thelength of the stay is.

Refugee A person who, ‘owing to well-founded fear of persecution for reasons ofrace, religion, nationality, membership of a particular social group or politicalopinion, is outside the country of his nationality and is unable or, owing tosuch fear, is unwilling to avail himself of the protection of that country’(Art. 1(A)(2), Convention relating to the Status of Refugees, Art. 1A(2),1951 as modified by the 1967 Protocol).

Irregular migration Movement that takes place outside the regulatory norms of the sending,transit and receiving countries. There is no clear or universally accepteddefinition of irregular migration.

Source: International Organization for Migration. Available at www.iom.int/key-migration-terms (accessed26 June 2019).


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Agency for Fundamental Rights 2016). A lack of official data recording disability status hasbeen recognised as a continuing issue for the displaced/refugee population group at thenational and international level (Roberts and Harris 2002; Crock et al. 2017; EuropeanUnion Agency for Fundamental Rights 2016), and there are doubts about whether recordingprocedures are adequate in refugee reception centres (Dowling 2016; European UnionAgency for Fundamental Rights 2016; Crock et al. 2017; Pearce 2015; Women’s RefugeeCommission 2008).

Health screenings provided the main mechanism by which disabled people are identifiedin the course of asylum and refugee protection systems which thereby reinforce the linkbetween disability and health. Smith-Khan et al. (2015) have observed differences in admin-istrative definitions within UNHCR processes in identifying disabled people, noting that theadoption of the International Classification of Functioning, Disability and Health (ICF)definition yielded greater identification of individuals. Limitations in data are not restricted tothis particular migrant group. Albrecht et al. (2009) note that differences in the way in whichdisability is determined administratively in different nation states can have profound implica-tions for entry into a country and access to services. In their investigation of immigrationpolicy in Canada, Hansen et al. (2017) highlight the lack of administrative data available todetermine exactly how many individuals have been denied entry under a particular clausediscussed later in this chapter.

Arguably, the lack of data about this group reflects the placing of disability as primarily ahealth status. From a research perspective, it can be difficult to identify research participantsbecause migrants may choose not to reveal their status owing to cultural beliefs about disabilityand fears that disclosure of disability may have negative implications for their immigration orasylum application. Difficulties in identifying disabled people to discuss life experiences hasnecessitated the use of case studies, convenience sampling and small sample sizes by disabilitystudies scholars in an effort to identify the lived experiences of disabled migrants.

Citizens of the world? Exploring intersections of disability,race and migration

Questions of citizenship are pertinent to our discussion of migration status. Where one wasborn, whether citizenship was gained through naturalisation, securing work or family visas,and whether entering as or becoming an undocumented migrant, all these factors impact andmediate entitlement and access to state resources. Identity is central to the concept of citi-zenship, and citizenship is about exclusion (Nash 2009; Lister 2007). Disability researchershave engaged with critical race theory and feminist studies to articulate the oppressionexperienced by disabled people and the denial of citizenship rights (Meekosha 2006; Crow1996; Morris 1991). The position of disabled people and migrants in society share manysimilarities. Disabled people are often denied the realisation of their social, political and economicrights, despite decades of activism, campaigning and legislation. As noted by Hughes (2013,2017), the claim of citizenship is a difficult one for disabled people to make.

The rendering of particular groups as non-citizens and (no)bodies (Erevelles and Minear2013: 354), finds expression in disabled migrants’ experiences. Disabled refugees and asylumseekers have been described as a hidden population (Amas and Lagnado 2010) for whom ‘alldoors are closed’ (Harris 2003). Nash argues persuasively that one has to understand theimpact of inequality on individuals’ ability to realise their citizenship rights. Research ondisability and migration recognises the multiple discriminations and oppressions that canoccur. Intersectionality theory requires us to recognise the multiple social identities and the


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oppression that can arise as a result of these identities (Crenshaw 1991; Walby et al. 2012).Taking a constitutive approach rather than an additive approach facilitates an examination ofstructural conditions which shape everyday lives, as the multiple identities and resulting dis-criminations and oppressions are experienced by individuals. While intersectionality theoryhas not always engaged with disability or migrant status (Meekosha 2006; Erevelles andMinear 2013), it offers a way in which to critically engage with systems of oppression and themultiple discriminations faced by disabled migrants. Albrecht et al. observes the racistencounters of disabled migrants in one interviewee’s everyday encounters in a local marketwhere she was told ‘go home … women who wear veils are terrorists’ (2009: 264). Suchwork provides an insight into the inequitable social structures and power differentials insocieties which shape lived experiences of disablist, sexist and racist practices which make upthe everyday (Dossa 2005; Soldatic I. 2012; Albrecht et al. 2009; Quinn 2014; Mirza 2011a).Writers have pointed to the need to situate contemporary lived experiences of disabledmigrants within wider social and historical frames of reference (Pisani and Grech 2015; Dossa2005). Colonial histories shape not only immigration policies and flows of people, butinfluence life chances through social, economic and cultural consequences of colonisation(Grech 2015). The next section considers disability and race in the current and past immi-gration policies of states.

No entry: disability and immigration policy

Several international conventions including the CRPD assert the rights of people to leavetheir country, to have a nationality and, where applicable, to seek refuge through the 1951Geneva Refugee Convention. However, while individuals have the right to leave a state, theydo not always have the right to enter a state. This section considers the place of disabilitywithin immigration policy, reflecting on historical framings of disability as a mechanismof denying access to states and the ways in which these narratives inform contemporaryimmigration policies.

Histories of immigration

The pathologising of disability remains a central discourse within immigration policy, withthe fusion of health and disability and related arguments about cost/burden being utilised as ameans by which to deny entry to particular bodies. Discourses about the value of theimpaired and racialised body find expression in the development of immigration policy andpractice throughout the late nineteenth and early twentieth century utilising the ‘science’ ofeugenics (Hughes 2017; Dolmage 2011; Baynton 2016; Mitchell and Snyder 2003; Dolmage2018).

Meekosha observes that disability is often missing from analysis of racialised power notingthat the ways in which discourses of inferiority in the exercise of such power to exclude andmarginalise are often tied together (2006: 172). While biological determinist views whichunderpin racist and sexist discourses have been held up to scrutiny, no such critical gaze hasalighted on the biomedical view of disability. As a result, criticism of racial eugenics exclusivelyreferences race as the focus of ascribed insufficiency.

Baynton asserts that disability was the prime mechanism of exclusion in immigration policyin the United States. Arguing that race was tied to disability by dint of those of non-Europeanextraction being viewed as ‘inferior’ and ‘defective’, he notes that as such ‘race’ was not theprime motivator, observing that ‘when they invoked race, it was usually in the context of


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relative tendency toward defect’ (2016: 25). Meanwhile, Mitchell and Snyder argue thatalongside theories of racial supremacy ‘disability came to be construed as a socially dehuma-nising construct in tandem with theories of racial degeneracy’ (2003: 851). ‘Defects’ and com-mentary on the likelihood of ‘burden’ to the state was inscribed upon those entering EllisIsland and other points of entry into the United States. ‘LPC’ was written on a person’sclothing denoting the judgement ‘Likely to become a public charge’ (Dolmage 2018: 16).

The visceral nature of immigration practices in the late nineteenth and early twentieth cen-turies is exemplified in the gaze of administrators and medical professionals. Historically, medi-cine has had an intimate connection to the practices of screening out and denying entry to thosedeemed ‘weak’, ‘vulnerable’, ‘feckless’, ‘feebleminded’ and ‘degenerate’. Such views of disabledpeople as burdensome to the state, highlighted by Oliver (1990) in his consideration of thedevelopment of capitalism and the production of disability, are all too familiar. North Americawas not alone in its development of racist and disablist policies, with scholars in Australia andCanada tracing the exclusion of those deemed to be undesirable bodies. Genetic ‘purity’ andconcern with protection of the population from disease and contagion feature in many pieces ofimmigration legislation drawn up at the turn of the twentieth century. One example is Australia’sImmigration Restriction Act 1901 which had a foundational role in the ‘White Australia’ policyand enforced a policy of excluding particular ethnic groups (see Meekosha 2006; Soldatic et al.2012; Soldatic and Fiske 2009). Soldatic and Fiske argue that although the Australian MigrationAct 1958 saw the removal of disablist and racist language, it nonetheless adhered to the constructof the ‘desirable’ citizen and thus ‘excludes a range of bodies’ (2009: 298).

Fernando and Rinaldi explore the historical logic of medical inadmissibility in Canadianimmigration policy from the late nineteenth century to the present day. They point to theuse of the notion of migrant as a disease vector in the 1902 amendment to the then Immi-gration Act, through exclusion of those ‘suffering from any loathsome, dangerous or infec-tious disease or malady’ (cited in Fernando and Rinaldi 2017: 16). The exclusion continuedthrough the 1976 Immigration Act: ‘The net result only relaxed border restrictions for the“productive” immigrant, thus growing the Canadian economy: this meant racialized anddisabled immigrant applicants whose opportunities to become productive had been limiteddue to systemic disadvantage experienced more of the same’ (ibid.: 18). They note that whilethe ‘White Canada’ policy was no longer acceptable in the country where a growingrecognition of the nature of racism in government policy was evident, the exclusion of personsdue to medical concerns was deemed a legitimate form of exclusion.

Bashford and Gilchrist (2012) observe that immigration policy in the United Kingdom fol-lowed the lead of colonial countries, with the increasing implementation of restrictive policiesthrough the 1905 Aliens Act. Similarly to that of Canada and Australia, UK legislation soughtto limit immigration by ‘prohibited’ groups as concerns arose that Britain was being populatedby ‘the destitute, the unfit and the undesirable’ of Europe (ibid.: 415). Included within thiscategorisation were those deemed ‘idiots’ and ‘lunatics’ (ibid.: 422). Medical inspection of allimmigrants was recommended, as concerns abounded that migrants were a disease vector – thisremains a powerful discourse in contemporary times (Abubakar et al. 2018).

Contemporary immigration policies

Scholars in the global north have pointed to the connections between historical racist anddisablist policies and contemporary immigration practices (Saltes 2013; El-Lahib 2016; Sol-datic and Fiske 2009; El-Lahib and Wehbi 2012). While strident eugenicist language andrhetoric may not be prevalent in today’s immigration laws and policies, it can be argued that


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the historical legacy of eugenics and the marking out of disabled people as unworthy, burden-some and thus undesirable potential citizens, is commonplace. Through various mechanisms,states use a series of exclusions to limit who has entry to their nation and rely upon discourses ofdeservingness, burden, contribution and, increasingly, a politics of assimilation. Both the mediaand politics have utilised migration as a key political issue and predominantly situate migration asone of ‘threat’ (see Philo et al 2013; Castles 2010). A focus on the right ‘type’ of migrant: young,highly educated/trained and importantly in these neoliberal times, able not only to contribute tosociety but also to be someone of independent means who will not be burdensome to their hostcountry. The use of points-based systems (e.g. Australia, Austria, Canada); a bewildering varietyof visas and ‘appropriateness’ for different types of migrant; language tests; minimum income testsand charging for use of services, such as the recent charging of migrants to use the UK nationalhealth service; all seek to ensure the admission of the right type of migrant who will contribute tosociety in an (economically) productive manner. Within this complex web of exclusions, dis-abled people can be denied entry. Issues of medical inadmissibility are still used by states as ameans to block entry to a country.

Contribution to health and social protection systems and discourses about the ‘burden’being placed on the state are utilised in many immigration systems across the general migrantpopulation but impact acutely on disabled migrants. Many states place limitations on thosewith health needs owing to concerns that they will be a burden on the health care system.The linking of disability to ill health results in discriminatory practices with regard to whogains entry to a country and who does not (see El-Lahib and Wehbi 2012). While manystates are signatories to the CRPD, a number have exercised reservations around immigra-tion. For example, the UK has a reservation around Article 18 Liberty of Movement andNationality of the CRPD which limits entry to the UK, a point noted by the Committee onthe Rights of Persons with Disabilities (2017). An explicitly biomedical view is employed inthese policies. The construction of the unwelcome visitor looms large (Hughes 2017).

Yu (2014) outlines the economic rationalism underpinning contemporary Australianimmigration policy and its impact on disabled persons who wish to live and work in thecountry. Yu explores the ways in which the economic value of family members and theability to meet the cost of care as it arises illustrates the ways in which neoliberal values ofindividual responsibility result in the exclusion of particular groups.

The situation facing families with disabled children can make the news. These often reflectthe situations facing those families with ‘supercitizens’ (Nash, 2009), individuals who haveeconomic and educational capital and are viewed as desirable assets. Immigration is not onlybased on exclusion, but, as noted by El-Lahib (2016), by a promise of opportunity. Whileother family members may gain access, disabled children are often denied visas (Collins2016). As noted by El- Lahib and Wehbi (2012), demands for clemency by the immigrationsystem rely upon a charity model rather than an assertion of the rights of disabled people to afamily life. While such individual and familial struggles to gain entry are often constructed asworthy, the situation of those elsewhere within the immigration system illustrates the inter-section of race, class and disability in an even less favourable light. The discrimination facedby disabled people through the immigration systems of the global north is highlighted in theincreasingly stratified citizenship statuses within such systems (Burns 2017). Soldatic et al.(2012) consider the ways in which particular migrant groups and associated visa requirementsshape differential opportunities to gain entry and access support once within Australia.Drawing on a case study, they observe the ways in which temporary labour visa requirementsexclude disabled children from migration as a result of administrative processes which offsetcosts onto the individual through insurance requirements and make apparent the costs of


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provision for a disabled family member (ibid.). In doing so, the state seeks to ensure that suchcosts will be borne by families rather than the state. Soldatic and Fiske (2009) illustrate theways in which intersection of racist and ableist policies and practices led to the unlawfuldetention of disabled citizens whose claims to citizenship were systematically ignored byauthorities. Highlighting the ways in which criminal and medical discourses were utilised tojustify the actions of authorities to remove and exclude disabled people from their communities,they assert that ‘Racism (in the initial formation of suspicion) and disability discrimination (in themaintenance of suspicion and silencing of disabled voices) were critical aspects of all these cases’(ibid.: 293).

Despite the implementation of equality legislation in Canada, excluding a person on thebasis of disability and the cost of medical care is still acceptable under the 2001 Immigrationand Refugee Protection Act (Fernando and Rinaldi 2017). The Act considers the impact ofhealth and social care costs through an ‘excessive demand’ clause. Rather than making amedical assessment of an individual when determining admissibility, immigration officersmust now take into account the family, and the financial and community supports available(El-Lahib and Webhi 2012). El-Lahib and Wehbi observe that

making admissibility of people with disabilities conditional on the guarantee thatthey will depend on their families reinforces perceptions about the dependency ofdisabled people. In other words, people with disabilities are perceived as dependentwho are potential burdens, not only on the Canadian state, but also on theirfamilies.

(Ibid.: 101)

The role of family versus state is observed in recent immigration policy, whereby those withthe available means and who are economically productive and who are deemed to be skilledmay sponsor a family member (Fernando and Rinaldi 2017; Saltes 2013; Hansen et al. 2017).There has been a shift with refugee and family class immigration visas now being exemptfrom the excessive demand clause (see ibid.; Fernando and Rinaldi 2017). However, scholarshave observed the status quo within policy developments, as judgements have challenged theapplication of excessive demand, rather than the concept itself. The assumption of lack isaccepted as a reasonable exclusion in the context of disability (Wilton et al. 2017).

As part of the admissions process, a number of states, including Australia and the UK,require applicants to pass language tests. Acquisition of a second language can be difficulteven for those without learning difficulties (Aspinall and Hashem 2011) but how is onesupposed to navigate such a requirement if one does have a learning difficulty? There areechoes of the literacy test applied in US immigration policy in the early twentieth century,which was used primarily as a basis to exclude those of races deemed unacceptable (seeBaynton 2016). Similarly, citizenship tests require applicants to take reading and compre-hension tests, which can be difficult for those with learning disabilities.

The evolution of immigration law and policy illustrates the fluid nature of immigrationstatus and its implications for (non) citizens. Changing immigration policy can have a pro-found effect not only on those seeking access to a state today, but also on those who havegained entry to countries in the past, as evidenced by the Windrush scandal in the UK. Inthis case, following the conclusion of the Second World War, Commonwealth citizens wereencouraged to settle in Britain in order to support the reconstruction of the country. Thechildren of the Windrush generation, many of whom arrived as minors, did not have formalcitizenship status bestowed on them. Changes to UK immigration policy from 2010 to


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present day led to the citizenship of this group being called into question. It emerged that peoplewere wrongly detained, denied legal representation, threatened with deportation, and deportedfrom the UK by the Home Office, the majority of whom had lived in the UK for most of theirlives (National Audit Office 2018). Individuals who had lived and worked in Britain all of theiradult lives lost their homes, livelihoods and incurred bills running into thousands of pounds fornecessary treatment (Gentleman 2018). The scandal highlighted the issues of historicalimmigration rules and an increasingly restrictive contemporary immigration policy.

From a disability studies perspective, the Windrush scandal highlights the intersection ofcolonial past, a contemporary racist immigration policy and its impact on access to care. Atthe point of contact within the UK health system, these British citizens suddenly foundthemselves denied access to health care and facing large bills as they moved from citizen toundocumented migrant. It became apparent that a number of those affected could also beclassified as disabled under the Equality Act 2010 including those with a diagnosis of cancer.

The next section considers the experiences of disabled migrants once they have reachedtheir destinations.

Gaining entry, but no access? Realising and practising rights

For those who do gain entry to host states through economic, family reunification or forcedmigration routes, barriers and opportunities arise as they attempt to integrate into communities.Disabled migrants can experience isolation and marginalisation in their new communities(Albrecht et al. 2009; Yeo 2017; Mirza and Heinemann 2012) and isolation from the widercommunity due to disabling environmental barriers (Harris 2003; Dossa 2005; Brandon andBloom 2014). Poor engagement of and with disabled people’s organisations (DPOs) has alsobeen highlighted in the literature (see Roberts and Harris 2002; Mirza 2011a; Ward et al. 2008).

Entitlement to services can be an issue for particular migrants because visa regulations, insur-ance requirements and government policies affect opportunities to access support (Abubakar2018; Rechel et al. 2013; Soldatic et al. 2012). Issues of access to services is a concern cross alldisabled migrant groups.

Reflecting the increase in the number of refugees and those in forced migration situations,much of the literature considers the experiences of disabled refugees and asylum seekers.However, many of the difficulties faced by this group have resonance with other disabledmigrants.

Accessing and navigating services

Systems, it appears, struggle to engage with the intersecting nature of disability and migrantstatus, with services focused on either disabled persons or migrants. In the UK, Roberts andHarris (2002) highlighted the poor awareness and provision for disabled refugees. Serviceproviders are often unclear about the rights and entitlements of disabled migrants, refugeesand asylum seekers and therefore can limit the support offered which disabled migrants haverights to (see Trotter 2012; Mirza 2011a; Mirza and Heinemann 2012; Roberts and Harris2002). More recent studies in the UK suggest that the situation had not much improved(Amas and Lagnado 2010; Nellums et al. 2018a, 2018b).

It has been identified that this group lacks the provision of appropriate services (Harris2003; Mirza 2011a). Difficulties in communicating with services reflect practical barriers suchas lack of interpreting and cultural mediation services which facilitate discussion betweenhealth and social care professionals (Sandhu et al. 2017; Brandon and Bloom 2014).


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In the 1990s Groce and Zola (1993) observed that the provision of services was oftenfocused on white middle-class needs and concerns, and barely addressed the needs of moreethnically diverse communities. Arguing for greater consideration of culture, they outlinethe ways in which causes of illness and impairment are framed; morbidity and mortalityexpectations (particularly for children), beliefs about causes of disability and the capacities ofdisabled people to live full lives are important to the development and provision of services.Consideration of culture must extend to a critical examination of the ways in which the hostsociety culture perceives and responds to disability. Stienstra (2012) notes that recognition ofcultural differences and training across services rarely acknowledge disability culture. Thecultural stigmatisation of disability affects not only immigration policy (Baynton 2016) butpervades social, economic and political life (Oliver 1990). Because a rights approach isadvocated it cannot be assumed that in practice disabled people are not subjected to envir-onmental and attitudinal barriers which form part of everyday practices in societies in theglobal north. In other words, we need to be careful that in much the same way as ‘culture’can be used as a simple way to account for inequalities facing many groups in society, parti-cularly from a health perspective (Nazroo 1998; Abubakar et al. 2018), its inclusion in ourconsideration does not detract from an exploration of structural determinants of inequality.Following Nash (2009), we must consider the ways in which the realisation of citizenship ismediated and shaped by inequality.

Focusing on the experiences of disabled asylum seekers and refugees, Roberts and Harris(2002) highlight the need for staff working across a range of services to be trained to dealwith issues relating to disability and equality, noting that staff should be aware of the rightsand entitlements of migrants, specifically on the needs of asylum seekers and refugees. Thefindings are echoed in more recent times with a 2018 report highlighting health care staff’slack of knowledge about the rights and entitlements of people seeking asylum and thoserefused asylum (Nellums et al. 2018a). A report found that in addition to staff’s lack ofknowledge, disabled migrants lacked information about specialist services (Nellums et al.2018a, 2018b). Mirza and Heinemann (2012) note the service gaps experienced by disabledCambodian and Somalian refugees in the American Midwest, with little acknowledgementof disability within refugee systems and limited understanding of disability from a rights per-spective, as there exists a focus on biomedical approaches to disability within services.

Researching the experiences of migrants with visual impairments in Ireland, Murphy(2013) found that migrants’ access to services was shaped by their previous experiences ofsupport services in their country of origin. Lack of provision in their country of origin led toan assumption that services in the new country did not exist. Issues are raised of how servicescan reach groups who may be isolated within the community and for whom there is limitedknowledge and experience about such groups even among service providers (see also Robertsand Harris 2002; Mirza 2011a).

For Sachs (1995), sensitivity to meanings of disability is crucial in the development ofservices, pointing to the role of culture in understanding silences between health care pro-fessionals and the families of disabled children. Quinn (2014) observes the significance ofdiffering conceptions of disability and mental distress in the development of services forgroups from diverse cultural backgrounds. Highlighting the impact of the asylum process onindividuals’ mental health, these in combination with cultural understandings of mentalhealth and incipient racism, stigma and discrimination encountered exacerbate the mentaldistress experienced (Tyler 2013; Quinn 2014). Differing conceptions of disability and stigmaattached to conditions within cultural communities can also hinder disabled migrants fromdisclosing health concerns (Nellums et al. 2018a, 2018b). This, alongside concerns about the


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use and sharing of health data with immigration authorities through recent bordering practicesin the UK, can effectively prevent disabled migrants from accessing the UK health care system(Nellums et al. 2018a, 2018b). The ability of health, education and social care professionals tochallenge, subvert and ignore racist and disablist edicts from government policy is observed ineveryday interactions, whereby efforts to support the needs of disabled migrants go beyond thelimitations of insurance and government policy (Soldatic et al. 2009; Nellums et al. 2018b).

Murphy’s (2013) work highlights the different cultural understandings of disability aroundthe globe and the realisation and challenges faced by disabled people and their communitieswhen encountering another way of understanding disability. For a number of her respon-dents, increasing autonomy and independence offered through support services, challengedthe at times stigmatising views of disability within their community, a finding echoed byHansen et al. (2017). In their research on migrant women with visual impairments in Canada,participants valued the expectation that disabled people could realise their citizenship rights,participating in the social and economic life of the community.

Work opportunities

Employment is a key mechanism whereby migrants integrate into host communities, whichprovides them with a sense of purpose, social networks and a feeling that they are con-tributing to the society in which they live (Albrecht et al. 2009) but the challenges facingdisabled people in securing employment commensurate with their skills and experience canbe considerable. The intersection of disability and race in shutting out individuals is summedup in one research participant’s conclusion: ‘I did not get hired because I am disabled andcoloured’ (Dossa 2005: 2534). Variation in legal status and differences in entitlement andrights under different visas place migrant workers in precarious situations should they acquireimpairment. Migrants are often called upon to do the work that others will not do. Suchwork can be dangerous and the risk of injury high (Kim 2011; Abubakar et al. 2018).Migrants move, seeking work opportunities which can be of a formal or informal nature.When such work is of an informal nature, migrants maybe locked out of social and healthprotection systems which could address any health issues or injuries sustained while carryingout that work. Migrants are also aware of the consequences of discovery of informal workingpractices (Albrecht et al. 2009). Exploring the experiences of industrial accidents and pooradherence to health and safety regulations, Kim (2011) outlines the challenges faced by Asianmigrants in South Korea.

Concluding comments

While disability is often equated with immobility, disabled people are making migration jour-neys (Hughes 2017: 468). Exploring disability and migration requires us to engage with issuesof central concern within disability studies: questions of citizenship, identity and difference.Many issues identified by disability studies researchers as limiting the rights of disabled peopleare magnified when we consider the intersection of disability and migration status. In doing so,it has suggested that two common themes within disability studies – discourses of burden andthe dominance of biomedical approaches to disability – are of relevance in exploring theintersection of disability and migration.

Discourses of ‘burden’, ‘lack’ and the conflation of health and disability are present withinadministrative systems which rely predominantly on biomedical approaches to disability.These discourses and the practices which emerge impact on the lives of disabled migrants;


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they result in exclusion from the process of migration, but are also used as a mechanism toensure entry, as health practitioners and politicians make a case for the entry of certain groupson the basis of vulnerability (as in the example of the Syrian relocation programme across theglobe; see Yeo 2017). Such examples highlight the stratification of rights, not only betweenmigrant groups, but also within them as discourses of deservingness shape the mobilitychoices of particular groups rather than discourses of rights.

There are a number of silences within this chapter. While it is well established that themigration process itself has an impact on health, we know relatively little about the ways inwhich the process of migration results in acquisition of impairment (Crock et al. 2017;Mitchell and Karr 2014). Greater recognition of the needs of disabled people in humanitarianand displaced situations in policy and practice in recent years has led to research into theneeds of this group. Echoing the experiences of disabled refugees in the global north, reluc-tance to disclose disability owing to fear of repercussions on asylum claims, poor access tohealth care, stigma arising from cultural understandings of disability, negative social attitudesand physical inaccessibility all result in isolation (see Women’s Refugee Commission 2008;Pearce 2015; Crock et al. 2017, Mirza 2011b). Critical engagement with ways of thinkingabout disability in displacement contexts raises important questions about administrativeprocesses and the way in which disability is mainstreamed in services and looks at how DPOscan become involved in supporting refugees (see Pearce 2015). Despite an interest withinhealth research concerning mental health issues experienced by particular migrant groups,relatively little is known about migrants who experience mental distress from a disabilitystudies perspective. What work has been done is increasingly pointing to the need to look atbroader institutions such as the asylum system in the production of distress and the impact ofracism and disablism on disabled migrants’ lives (see Quinn 2014).

Intersectionality theory offers one way to engage with complexities of disability and migra-tion, providing a means to include disability as a core issue within migration studies. Thisapproach requires that we critically engage with broader structural forces which shape the livesof mobile populations, considering the social, economic, cultural and political landscape inwhich they are situated. In doing so, as observed by Hansen et al., we need to acknowledge thecontingent nature of both disability and migration in spatial and temporal terms (2017: 1135).

There are many challenges in exploring the ‘rich and diverse’ lives of disabled migrants(Albrecht et al. 2009: 269), not least the methodological issues raised earlier in this chapter.Difficulties about the lack of administrative data raise bigger questions about definitions andat times the contradictory use of disability as a health issue versus disability as a rights issue bycountries and the need to expose such contradictions. Following on from this, researchersneed to consider the implications of moving from one country’s definition of disability toanother for entry, entitlement and access to services. Exploring and giving voice to the livedexperience of disabled migrants in their new homes requires us to think carefully about themethods and ethics of how we engage and involve this group in the research process. Parti-cipatory, action research and co-production offer means by which to actively involve andshape research and explore differences in understandings of disability between researchers andparticipants (see Quinn 2014). What do different understandings of disability mean for anindividual’s identity and relations with their wider community? Is distancing from one’scommunity of origin inevitable or does this offer opportunities for dialogue?

Recognition of the right of disabled migrants to live, work, study, care and be cared forraises fundamental questions about citizenship in the global north. As we live in ‘superdiverse’communities, in what ways can our social and health care systems be developed to recogniseand respond positively to differences (Bradby et al. 2017) and in doing so support disabled


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migrants to realise their rights in the community? Recognition of cultural framings of disabilitywithin the development of, access to and delivery of services is challenging not only for migrants,but also for the organisations who design and deliver such services. The need for DPOs to engagewith disabled migrants and the role they can play in supporting integration into communities’surfaces throughout the literature offers a means by which to explore points of similarity andassert the rights of groups to be active members of society.

Acknowledgement

Thanks to Richard Brunner, University of Glasgow for thoughtful comments on an earlierdraft of this chapter.

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23

DISABILITY INDEVELOPING COUNTRIES

Tom Shakespeare

Introduction

On 3 May 2008 the Convention on the Rights of Persons with Disabilities (CRPD) finallycame into force, marking perhaps the end of the first phase of the global disability rightsmovement, which can be said to have begun in 1981, with the formation of Disabled Peo-ples’ International. Principles and practices such as the social model of disability, independentliving, inclusive education, community-based rehabilitation and slogans such as ‘NothingAbout Us Without Us’ are now in common usage around the world, despite the undoubtedsurvival of charitable ways of thinking and the continued dominance of professional approa-ches in the disability field. While negative attitudes remain ubiquitous, and despite thedamaging impact of austerity in Britain and elsewhere, in high-income countries there is anew generation of people with disabilities who have grown up expecting access to education,employment and community participation. Rather than needing to identify as disabilityactivists, and joining the struggle for their rights, young people with disabilities increasinglyhave the option of joining the mainstream and of expressing their individuality withoutreference to their impairment. Access is expected as a right, not a privilege.

Yet many of these benefits have not reached the majority of the world’s population, which livesin conditions far removed from what pertains in North America, Europe or Australasia. Humanrights discourse may have permeated the planet, but the everyday situation is not just or equitable.This chapter explores some of the ways in which most people with disabilities remain disadvantaged,and highlights a few of the signs of hope that the situation may change for the better in future.

The World Health Organization (WHO)/World Bank World Report on Disability (2011)identified the lack of reliable evidence about the lives of people with disabilities in develop-ing countries, and the problems they face. However, most of the research and the analysis ofdisability does remain relevant to the minority of people with disabilities worldwide (Grech2009). However, the situation is beginning to change. For example, Banks and Polack founda large increase in studies of disability and poverty in low- and middle-income countries thatfulfilled their selection criteria from about 2008 onwards, perhaps coinciding with the adventof the CRPD; the number of such studies rose from 17 during the period 2002–2007 to 68in 2008–2013. This growing emphasis has also been reflected in publication of new journalssuch as the African Journal of Disability and the Journal of Disability and the Global South.

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Disability from the global to the local

Disability is a global phenomenon, although there are local differences in magnitude andcharacteristics. In low-income countries, infectious diseases, accidents and injuries may lead toa high incidence of disability, particularly among children, but poverty and lack of health caremean that people with disabilities may suffer premature mortality. By contrast, in high-incomecountries, congenital anomalies have become a highly significant cause of childhood disability,because communicable diseases have largely been eliminated.

However, there are important areas of convergence between the epidemiology of dis-ability in different settings. The non-communicable diseases – diabetes, hypertension, heartdisease – which are major causes of disability in high-income countries are now becomingsignificant problems in countries such as India and the People’s Republic of China. Giventhat people are living longer in all societies, heath conditions associated with ageing are onthe rise everywhere. A further commonality is the high burden of depression and othermental health conditions. According to the Global Burden of Disease study (2004), unipolardepression is the fourth leading contributor to the global burden of disease, accounting fornearly 12 per cent of total years lived with disability worldwide, and by 2020 it is expected tobe the second highest contributor to the global burden of disease (Ustün et al. 2004).

While disability is ubiquitous, the responses to it vary, depending on context, culture andresources. This can mean that priorities and concepts developed within the predominantlyWestern milieu of disability studies may have limited relevance in other settings.

Impact of impairment/priority of prevention

Prevention of health conditions leading to disability is a controversial topic (Wang 1998;Lollar and Crews 2003). The social model of disability approach (Oliver 1990) has sometimesbeen interpreted as meaning that rather than preventing impairment, the emphasis shouldonly be on removing barriers to disabled people. The CRPD does not mention prevention,except insofar as persons with disabilities should receive health services which can preventthem from developing secondary conditions or comorbidities. Many disability rights activistswould prefer to see policies that address prevention of adverse health conditions being keptentirely separate from policies promoting the rights of persons with disabilities.

However, the difficulties and realities of life with impairment in low-income countriessuggests that interventions to prevent avoidable impairment should have high priority.Indeed, the efforts of international agencies such as WHO, the Joint United Nations Pro-gramme on HIV and AIDS (UNAIDS) and the Global Partnership on Disability andDevelopment are largely dedicated to reducing the prevalence of avoidable conditions such asHIV, tuberculosis, malaria, polio, blindness and deafness, as well as the impact of causes ofillness and impairment such as road traffic injury, childhood injury and violence.

For example, Allotey et al. (2003) challenge assumptions surrounding the DisabilityAdjusted Life Year (DALY), by showing that paraplegia has very different implications inAustralia and Cameroon. What they describe as the social determination of the severity ofdisease means that people with paraplegia in the high-income context, while disadvantaged,can nevertheless participate in society and have good lives. In Cameroon, however, 50 percent of rural and 15 per cent of urban participants in the study did not own or have access towheelchairs. Transport was almost impossible to access, roads and paths were impassable,sanitation was limited and toilets were inaccessible. As a result of these factors, it is often thecase that in low-income settings, people with paraplegia only live for a few years after injury,

Disability in developing countries

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due to the impact of avoidable complications such as pressure sores and urinary tract infec-tions (UTIs). While Australian respondents reported stigma, pain and spasms, and UTIs, aswell as restricted employment options, the majority rated their health as very good, they hadmanual or motorised chairs, and could expect access to buildings and public spaces. As aresult, Australians with paraplegia scored much higher than their counterparts in Cameroon:‘the single-room experience of a person with paraplegia in Cameroon, who now smells sobadly that she is socially isolated, has no corollary in the Australian experience’ (ibid.: 957).

There need be no contradiction between preventing impairments and promoting rightsand inclusion for people with disabilities. Emma Stone (1996) has pointed out that China,which has been criticised for the preventive stance of its Maternal and Infant Health CareLaw, also has gone further than many developing countries in achieving provision andinclusion for its citizens with disabilities. It is also the case that organisations controlled bypeople with disabilities have taken a lead in prevention initiatives; for example, the QuadParaAssociation of South Africa campaigns for better road safety using the slogan ‘Buckle Up –

We Don’t Want New Members’.

Cultural differences

Are concepts such as the social model of disability (Oliver 1990) or independent livingapplicable outside the developed countries in which they were first developed? Miles (2003)challenges the application of European or American models of autonomous individualism todisabled people’s organisations in South Asia. Broadly speaking, while in all societies familymembers provide care, in non-Western societies it is more common, and more culturallynormative, for people with disabilities to be supported within the family and community. Ananthropological distinction is often drawn between ‘egocentric’ Western societies and‘sociocentric’ developing societies, where family and community are more important thanindividualism (Ingstad and Whyte 1995; Shakespeare 2000).

This does not mean that international human rights standards such as the CRPD are not relevantin developing country settings. But it does mean that aspiring to live independently may not be suchan important goal in a culture in which almost everyone is interdependent and most peoplelive with their extended families. Despite the problems of poverty and access to services that areelaborated upon in this chapter, in some ways people with disabilities may be more included in therelational cultures of low-income countries than in Western individualistic societies.

Moreover, many cultures (e.g. Maasai, Indigenous Australian, etc.) may not share the unitaryconception of ‘disability’ which underpins, for example, the International Classification of Func-tioning, Disability and Health, or the social model of disability (Oliver 1990). People in traditionalcultures may have different beliefs about the origins and nature of disability. However, it is impor-tant not to adopt a relativistic approach. Respondents to Shakespeare et al. (2018) highlighted howbeliefs about witchcraft could mean that children with impairments were rejected by their familiesor communities, or taken to a series of traditional healers, rather than getting appropriate medicalcare and support for their conditions. Above all, religion remains a very important frameworkfor both understanding disability and promoting community in many developing countries,whereas in the global north religion is declining fast as a source of meaning or connection.

Barriers to participation

This section reviews some of the evidence about areas of life where people with disabilitiesmay experience unmet needs, or face barriers to participation. It should be noted that


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disability is a heterogenous experience (see, for example, Grech 2008). People with differentimpairments may experience different levels of disadvantage, with people with intellectualimpairments and mental health conditions often facing the most barriers. Women canexperience the double burden of gender inequality in addition to disability. People withdisabilities who come from high-income families will do much better than the generalpopulation in low-income settings. Those residing in urban areas are generally better servedthan those living in rural or remote areas.

Environments

Disabled people are particularly disadvantaged due to environmental barriers in low-incomecountries (Allotey et al. 2003; Coulson et al. 2006). While there are barriers in all settings,generally, people in rural areas are additionally disadvantaged, because services tend to beconcentrated in urban areas, and because transport opportunities are limited.

To list some of the problems in the home: pit latrines are difficult to use for people withphysical or visual impairments; dwellings may be cramped, lacking space for people who usewheelchairs; and steps or other obstacles may render buildings inaccessible. To list some ofthe problems in the wider environment: paths or roads may be uneven, potholed, andimpassable in wet weather; high kerbs and lack of safe crossings make it dangerous to crossroads; and there may be concerns about security. Transport options may be limited to inac-cessible minibuses or vans, with taxis being unaffordable or else taxi drivers being prejudicedagainst carrying disabled people because of the extra time and hassle involved. All thesecommon problems in low-income settings are usually multiplied in informal settings, inrefugee camps, and after humanitarian disasters.

However, the need to rebuild, and the inflow of development aid, can create opportu-nities to build more accessible dwellings, as was the case with a particular Sri Lankan housingproject that was initiated after the Boxing Day tsunami, which achieved low-cost level accessand accessible bathrooms. Moreover, there are models for more accessible solutions ininformal settings; for example, a seated platform next to a communal hand pump, or a benchfitted over a pit latrine (Jones and Reed 2005). In transport, bus rapid transit schemes havebeen developed to ensure access for all, for example in Curtiba, Brazil, and metro schemes incities such as Delhi, India, have been constructed with accessibility in mind. Examples ofefforts to develop training in universal design for architects and engineers can be found incountries including India and Malaysia.

Health and rehabilitation

While disability should not be considered a health issue, people with disabilities clearly do havehealth care needs, and sometimes more complex and continuing needs than non-disabledpeople. These include the need for treatment, management and rehabilitation for primaryconditions, and mainstream health care needs for health promotion, screening and treatmentfor conditions such as HIV/AIDS, for example, to which people with disabilities might bedisproportionately vulnerable.

However, people with disabilities often experience inequities in health. People with dis-abilities are often poorer, and thus suffer increased exposure to social determinants of illhealth. Moreover, low-income countries are less likely to have universal health systems,which means that the cost of health care, in the form of ‘catastrophic health expenditure’, cantip people with disabilities into poverty. A study in Sierra Leone, for example, found that


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persons with severe or very severe disabilities spent on average 1.3 times more on health carethan non-disabled respondents (Trani et al. 2010). The WHO World Health Survey foundthat catastrophic health expenditure was experienced by nearly one-third of respondents withdisabilities in low-income countries, but by less than one-fifth of people with disabilities inhigh-income countries (WHO 2011)

People with disabilities, who may have greater need for health care, face barriers inreceiving the care that they require. These may arise from inadequate provision, access ortransport difficulties, discrimination or prejudice in health care. Problems with attitudes,information and communication are particularly important; a survey commissioned by theZimbabwe Parents of Handicapped Children’s Association found that people with disabilitieswere excluded from general HIV/AIDS services because voluntary counselling and testingservices were not offered in sign language for people with hearing impairments and educationand communication materials were not offered in Braille for people with visual impairments(Banda 2006). A study in rural areas of The Gambia reported that out of 380 people withepilepsy only 16 per cent knew that preventive treatment was possible. Of the 48 per cent ofpeople with epilepsy who had never used biomedical treatment, 70 per cent did not knowthat clinics offered treatment for seizures (Coleman et al. 2002)

In a review of childhood hearing impairments, where proven neonatal interventions (e.g.vaccination, hygiene, education) can reduce the impact, the authors conclude that ‘Nationalhealth systems in most developing countries are too weak to bear the added burden of non-fatalbut disabling disorders without external technical and financial support’ (Olusanya and Newton2007: 1316)

Mental health is a particular area of unmet need. In a large multi-country survey supportedby WHO, it was shown that between 76.3 per cent and 85.4 per cent of people with seriousmental health conditions in developing countries received no treatment in the year prior tothe study, compared to treatment gaps in high-income countries of between 35.5 per cent to50.3 per cent (Demyttenaere et al. 2004). Access to psychiatric medicines has been found tobe particularly problematic (WHO 2009).

Rehabilitation is another neglected area of health care. Data from four Southern Africancountries found that between 17.3 per cent and 36.6 per cent of those who needed assistivedevices actually received them. Between 26.3 per cent and 54.8 per cent of those in need ofmedical rehabilitation received this service, while between 8.4 per cent and 23.6 per cent ofrespondents received the welfare services they needed (Eide et al. 2003; Loeb and Eide2004; Eide and Loeb 2006). A study of people identified as disabled from three districts inBeijing, China, found that 75 per cent of those interviewed expressed a need for rehabili-tation services of different types, of which only 27 per cent had received such services(Zongjie et al. 2007).

Assistive devices such as wheelchairs, artificial limbs, hearing aids and splints are vital forachieving independence and participation in society. A national study in 2007 on rehabilita-tion needs in China found that the level of unmet need for rehabilitation services was parti-cularly high in the areas of assistive devices and rehabilitation therapy (Qiu 2007). In 2005 itwas estimated that 30 million people in Africa, Asia and Latin America needed prosthetic andorthotic services (Borg et al. 2009, requiring an estimated 180,000 rehabilitation professionalswith varying levels of training; in that year there were 24 prosthetic and orthotic schools indeveloping countries, from which a total of 400 trainees graduated annually. Worldwide,existing training arrangements for prosthetic and orthotic professionals and other providers ofessential rehabilitation services are completely inadequate in comparison to the level of need(ISPO/WHO 2005).


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Education

Most of the available cross-section data for education suggest that children with disabilitiestend to have lower school attendance rates. For example, Deon Filmer (2008) reportedon surveys from 14 countries, which showed gaps in attendance between disabled and non-disabled children of up to 50 per cent. In India, a survey estimated the share of disabledchildren not enrolled in school at more than five times the national rate, even in the moreprosperous states. In Karnataka, the best performing major state, almost one-quarter of allchildren with disabilities were out of school, and in poorer states, such as Madhya Pradeshand Assam, more than half of such children did not attend school (World Bank 2009).SINTEF data from Malawi, Namibia, Zambia, and Zimbabwe show that between 9 per centand 18 per cent of children of aged five years or older without a disability had never attendedschool, but between 24 per cent and 39 per cent of children with a disability had neverattended school (Loeb and Eide 2004; Eide et al. 2003b; Eide and Loeb 2006; Eide et al.2003a). The exclusion of disabled children from school is particularly important, becausewithout education, people with disabilities are less likely to become employed, and are morelikely to remain poor.

Clearly, global initiatives to promote education for all have failed to include children withdisabilities effectively. Barriers to participation in education include lack of political commit-ment and leadership; inaccessible schools; distance of travel to school; negative attitudes andlow expectations of teachers and families; rigid curriculum and lack of appropriate teachingmethods and materials. Lack of funding means that there are very few specialist schools inlow-income countries, so expansion of this provision is neither cost-effective, nor desirable interms of the CPRD’s emphasis on inclusive education systems.

A number of low-income countries have taken steps to improve access to education forchildren with disabilities. For example, after support and input from Finland, Ethiopia’sSebeta Teacher Training Institute now ensures that teachers are able to teach children withdisabilities and to meet diverse learning needs (Lasonen et al. 2005). An evaluation of anintervention in the Lao People’s Democratic Republic showed it had promoted inclusiveeducation in 539 schools (Grimes 2009), although this only reached 3,000 children withdisabilities (less than one-tenth of the total population of children with disabilities in LaoPDR). During the same period Viet Nam ran a campaign to identify excluded children andto train teachers and parents, reaching 4,000 children with disabilities. Again, the majority ofVietnamese disabled children remain excluded (Villa et al. 2003). Non-governmental orga-nisations (NGOs) have developed model projects in many low-income countries, such as theOriang project in western Kenya, supported by Leonard Cheshire Disability (Ogot et al.2008). While these bring benefits to the 2,568 children enrolled in five primary schools, ofwhom 282 are disabled, this has limited impact at the national level.

Employment

While it is well known that there are major gaps in employment between disabled andnon-disabled people in high-income countries, the existing data reveal that the gaps inlow-income countries are less pronounced. In Zambia, for example, researchers forSINTEF (Eide and Loeb 2006) found that the employment rate of people with disabilitieswas 45.5 per cent, compared with 56.5 per cent of the general population, giving anemployment ratio of 0.81. In India, Mitra and Sambamoorthi (2006) found that 37.6 percent of disabled people were employed, compared with 62.5 per cent of the general


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population, giving a ratio of 0.61. In China, Buckup (2009) found that 48.9 per cent ofdisabled people and 73 per cent of non-disabled people were employed, giving a ratio of0.67. Given that in Britain and in many Organisation for Economic Co-operation andDevelopment (OECD) countries, disabled people are on average twice as likely to beunemployed as non-disabled people (i.e. a ratio of 0.5), and this shows that the differentialis less acute in low-income countries. This is due to lower overall employment rates indeveloping countries; for example, in Sierra Leone 56.1 per cent of people with mild ormoderate disabilities were in work, compared with 60.4 per cent of non-disabled adults(Trani et al. 2010).

The implication is that as a country develops economically, the employment inequalitiesbetween disabled and non-disabled people are likely to increase. Many people in low-incomecountries, whether disabled or non-disabled, are engaged in household agricultural activity or inthe informal economy. However, people with more severe impairments are likely to be dis-advantaged in any setting or sector; the evidence from Sierra Leone shows that only 29.6 per centof adults with severe or very severe disabilities were in work (Trani et al. 2010) and Grech (2008)paints a grim picture of the struggle for subsistence in rural Guatemala.

Poverty and social protection

Evidence that disability and poverty are linked is increasing. A review by Banks and Polack(2014) found that 80 per cent of 97 epidemiological studies from low- and middle-incomecountries found significant links between disability and economic poverty. Poverty anddisability are areas where evidence is particularly weak in low-income settings. Data arescarce, and methodologies often inadequate (Braithwaite and Mont 2009).

It is commonly asserted that people with disabilities are disproportionately poor. In high-income settings, there is plenty of evidence to substantiate this claim (Zaidi and Burchardt2005; Braithwaite and Mont 2009; Cullinan et al. 2010). However, while it is always assumedthat the problem is worse in low-income settings – intuitively, most people believe that thismust be the case – there is little hard evidence. When the majority of the population is vul-nerable to poverty, it may be that people with disabilities do not fare much worse than theirneighbours. They often have fewer assets and worse living conditions. However, the SINTEFstudies of Southern African countries showed that the gap was very narrow for many indicatorsof household well-being (Loeb and Eide 2004; Eide et al. 2003b; Eide and Loeb 2006; Eide etal. 2003a). Research in Sierra Leone told a similar story (Trani et al. 2010).

In South Africa, adults who are unable to support themselves economically because theyare disabled receive the disability grant, and families with children who require extra care andattention receive the care dependency grant (Swartz and Schneider 2006). The number ofrecipients of the grant rose from 732,322 in April 1997 to 1,270,964 in April 2004. In mostcases, the grant relieves poverty for an entire family. In the context of a society in which upto one-quarter of people are living in chronic poverty, it may consequently be the case thatfamilies with disabled members could be better off than their non-disabled members (Loeb et

al. 2008). However, South Africa is unusual. Few low-income countries have social safetynets, particularly safety nets aimed at people with disabilities. However, countries includingBangladesh, Ghana and Zambia are beginning to experiment with social protection pro-grammes (Marriott and Gooding 2007).

There is plenty of evidence that people with disabilities face material hardship in low-incomecountries. But generally speaking, in low-income countries, because poverty is ubiquitous, thegap between households with disabled members and households without disabled members is


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less extreme than the gaps in high-income settings. This is not to say that disabled people are notpoor in low-income countries, only that so is everyone else. However, given that people withdisabilities have to bear additional costs – for health care and other support – they require ahigher income if they are to end up at the same level as others, which Amartya Sen has called‘conversion handicap’. When Braithwaite and Mont adjusted the Viet Nam data for the extracosts of disability, they found that the poverty rate for households with disabled membersjumped from 16.4 per cent to 20.1 per cent – the overall poverty rate in Viet Nam is 13.5 percent (Braithwaite and Mont 2009).

Ways forward

The disabled people’s movement is not limited to high-income countries. As authors such asDiane Driedger (1989) and James Charlton (1998) have shown, the principle of ‘Nothing AboutUs Without Us’ has become ubiquitous in disability communities worldwide, and internationalnetworks such as Disabled Peoples’ International, the World Blind Union or the World Fed-eration of the Deaf have a very broad global membership. At the local level, countries like SouthAfrica and Uganda have strong guarantees on disability rights in their Constitutions, and goodprovision for representation of people with disabilities within government and civil society(Matsebula et al. 2006). Where strong, well-funded and effectively led disabled people’s organi-sations (DPOs) can campaign for change, develop information and independent living servicesfor their members, and help individuals to empower themselves. However, DPOs themselvesneed to ensure that they are representative of all disabled people, that they are based on a humanrights approach, and that they are accountable to their members (Lang 2009).

Worldwide, the advocacy of the disability movement was a key factor in achieving theCRPD in 2006. Now ratified by more than 177 countries, this international treaty sets outclearly what states and other duty bearers need to do to implement the human rights andensure the social development of people with disabilities. The Committee on the Rights ofPersons with Disabilities is holding countries to account, thus using the Convention as a toolfor positive social change – removing barriers, challenging attitudes and improving services.Starting with Article 12 on equal recognition before the law, the Committee has issuedGeneral Comments on seven topics, including inclusive education (Article 24); independentliving (Article 19); equality and non-discrimination (Article 5).

International cooperation (Article 32) is an important way of achieving the goals of the CRPD.Better data and research are also explicitly mentioned (Article 31) as a means to improve policiesand identify barriers, and the ongoing work of the Washington Group, developing quantitativetools, plus funding for disability-inclusive development research by the UK Department forInternational Development and others, will help implementation of Article 31. However, asRaymond Lang (2009) argues, the Convention is not a panacea; it is a necessary step forward, butnot sufficient to implement disability rights on its own. In particular, the states responsible for itsimplementation need to prove that they are capable of delivering on its promises.

Within the context of the human rights agenda epitomised by the Convention, it is importantto mention international development assistance and community-based rehabilitation (CBR) astwo relevant tools for helping to overcome the problems described earlier in this chapter.

Development assistance

While international NGOs have often created very progressive initiatives – around livelihood,education, rehabilitation and other needs – these welcome initiatives to foster development and


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disability inclusion need to be put into context. Aid represents less than 10 per cent of the grossnational income of the world’s 50 poorest countries. Roger Riddell estimates that less than 5 percent of all overseas direct aid is expended on disability projects and programmes (2010: 44).Often, quick fixes like immunisation programmes are preferred by funders to complex and long-term interventions such as building rehabilitation services or making education inclusive. Forstates, let alone DPOs, it is difficult and time consuming to access funding. For example, there aremore than 200 official donor agencies, and fear of corruption and waste means that monitoringand reporting requirements can be onerous.

The Millennium Development Goals (MDGs), agreed on by the international communityin 2000 and endorsed by 189 countries, had a strong impact, for example in halving thepercentage of people in extreme poverty. However, disabled people’s needs and rights werelargely neglected in the MDGs. By contrast, the 17 Sustainable Development Goals andassociated targets, ratified by the United Nations General Assembly in 2015, specificallymention disability in different places: Goal 4 on education mentions inclusive learningenvironments; Goal 8 mentions persons with disabilities accessing the job market; Goal 10emphasises the social, economic and political inclusion of persons with disabilities; Goal 11mentions accessible cities; and Goal 17 emphasises disability-disaggregated data.

Other hopeful signs are represented by the Global Partnership on Disability and Development,initiated by the World Bank, and by the World Bank’s own shift towards promoting disabilityrights; the Bank announced in 2018 that all its infrastructure programmes would be inclusive by2020, and all its education programmes by 2025. In that year the Bank published a DisabilityInclusion and Accountability Framework which aims to promote the mainstreaming of disabilityand barrier removal, based on the principles of non-discrimination and equality, accessibility,inclusion and participation, and partnership and collaboration.

Under the leadership of Secretary of State Penny Mordaunt, the UK Department for Inter-national Development has made considerable financial commitments to disability-inclusivedevelopment, assistive technology, and research to strengthen the evidence base. However, itshould be noted that previous attempts at mainstreaming disability by the United States Agencyfor International Development, the World Bank, the Norwegian Agency for DevelopmentCooperation (NORAD), the Department for International Development (UK), AusAid(Australia) have had mixed success (Albert et al. 2005). Some DPOs in developed countries –such as the Norwegian Council on Disability and the Finnish Abilis Foundation – are themselvesraising funds to support their counterparts in low-income settings.

Community-based rehabilitation (CBR)

CBR began as a way of ensuring that disabled people accessed rehabilitation in communitysettings, given the scarcity of tertiary facilities in low-income countries. However, theapproach was taken up by other agencies such as the International Labour Organization(ILO) and the UN Educational, Scientific and Cultural Organization (UNESCO), andevolved into a broader strategy for social inclusion, poverty reduction and communitydevelopment, particularly in the wake of the publication in 1994 of a joint position paper byWHO, the ILO and UNESCO. CBR services are delivered by professional workers, trainedvolunteers, other members of the community including family members, and by people whohave disabilities themselves. CBR projects vary in the extent to which they remain focusedaround medical rehabilitation or take a broader approach, and in the extent to which peoplewith disabilities are centrally involved, within a commitment to human rights and empower-ment. CBR programmes are oriented not just at supporting individuals, but towards removing


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social barriers – for example, by providing access to water and sanitation or transport (Rule et

al. 2006), or challenging negative attitudes and promoting inclusion in education (Dalal 2006)Although more than 90 countries now have CBR programmes, and while CBR networks

now exist in the Asia-Pacific, African and South American regions, provision of CBRremains uneven and variable. In some countries (e.g. Mongolia), governments use CBR as astrategy, whereas in other countries it is left to international or national NGOs to developprojects, which often have limited coverage and reach. A typical example of implementationis Malawi, where CBR was first introduced in 1988 and which is now working towardsestablishing a national programme (Eggen et al. 2009). The Malawi Council for the Handi-capped (MACOHA) – a subsidiary of the Ministry of Persons with Disabilities and theElderly – is the main implementing agency, working in partnership with other governmentministries, the Federation of Disability Organisations in Malawi, Christoffel Blindenmission,the Norwegian Association of the Disabled, and Sightsavers International. The MACOHA isusing the CBR Guidelines as a framework to align the various CBR initiatives in Malawiinto one comprehensive programme.

Evidence of the effectiveness of CBR varies, but research and evaluation are increasinglybeing conducted (Mannan and Turnbull 2007; Kuipers et al. 2008; Flinkenflügel et al.2005). A systematic review by the International Centre for Evidence in Disability (Iemmi etal. 2015) found 15 studies of different types of CBR for different impairments, almost all ofwhich found beneficial effects for people with impairments such as stroke, chronicobstructive pulmonary disease, arthritis, and modestly beneficial effects for people withschizophrenia, dementia and intellectual impairment. However, methodologies still need tobe strengthened.

Information sharing is increasing through regional networks such as the CBR Africa Network(CAN), the CBR Asia-Pacific Network and the CBR American and Caribbean Network. TheCBR Guidelines (WHO 2010) were a major step forward, emphasising the empowerment ofpersons with disabilities. Key principles for effective CBR include promoting intersectoral col-laboration (for example, among health, education and livelihood initiatives) and partnership (forexample, among professionals, families and disabled people. One future challenge is to betterinvolve disabled people’s organisations in the development of CBR, and another is to developaccredited training for CBR workers (Rule et al. 2006).

Conclusion

Disability studies cannot focus solely on Western experiences. It would be deeply regrettableif researchers spent their time exploring theoretical issues while neglecting practical andapplied research to support social change. The diverse experiences of those millions of peoplewith disabilities living in highly varied countries and cultures are fascinating, while the pov-erty and social exclusion endured by the majority are far in excess of anything experienced indeveloped countries. Both curiosity and social commitment demands than Westernresearchers contribute to expanding the knowledge base on global disability.

This chapter has given a very brief overview of some of the issues, citing some of theavailable research and data from low- and middle-income countries. It is important to reiteratethe need for more and better research on the living conditions of people with disabilities, andwhat works to remove barriers and foster participation. There are many examples of goodpractice and low-cost solutions in developing countries, but evaluations need to be conductedand disseminated to share best practice and shape policy. This information will be vital tosuccessful implementation of the CRPD.


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The priority is therefore to foster research collaborations between developed and devel-oping countries, and to contribute to the training of researchers in low-income settings,particularly researchers with disabilities. In this endeavour, it is necessary not simply to exportWestern notions – for example, the social model of disability or independent living – but torespect and learn from different traditions and ways of including and empowering peoplewith disabilities.

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Rule, S., Lorenzo, T. and Wolmarans, M. (2006) ‘Community-Based Rehabilitation: New Challenges’, inB. Watermeyer, L. Swartz, T. Lorenzo, M. Schneider and M. Priestley (eds) Disability and Social Change:

A South African Agenda, Cape Town: Human Sciences Research Council Press, pp. 273–290.Shakespeare, T. (2000) Help, Birmingham: Venture Press.Shakespeare, T., Mugeere, A., Nyariki, E. and Simbaya, J. (2019) ‘Success in Africa: People with Dis-

abilities Share Their Stories’, African Journal of Disability, 8: 522. DOI: doi:10.4102/ajod.v8i0.522.Stone, E. (1996) ‘A Law to Protect, A Law to Prevent: Contextualising Disability Legislation in China’,

Disability and Society 11(4): 469–484.Swartz, L. and Schneider, M. (2006) ‘Tough Choices: Disability and Social Security in South Africa’, in B.

Watermeyer, L. Swartz, T. Lorenzo, M. Schneider and M. Priestley (eds) Disability and Social Change: A

South African Agenda, Cape Town: Human Sciences Research Council Press, pp. 234–244.Trani, J.-F., Bah, O., Bailey, N., Browne, N., Groce, N. and Kett, M. (2010), Disability in and around

Urban Areas of Sierra Leone, London: Leonard Cheshire Disability/UCL.Ustün, T. B., Ayuso-Mateos, J. L., Chatterji, S., Mathers, C. and Murray, C. J. (2004) ‘Global Burden of

Depressive Disorders in the Year 2000’, British Journal of Psychiatry 184: 386–392.Villa, R. A., Tac, L.V., Muc, P.M., Ryan, S., Thuy, N.T.M., Weill, C., Thousand, J.S. (2003) ‘Inclusion in

Viet Nam: More Than a Decade of Implementation’, Research and Practice for Persons with Severe Disabilities

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Health Communication 3: 149–159.World Bank (2009) People with Disabilities in India: From Commitments to Outcomes, Washington, DC: World

Bank.World Health Organization (WHO) (2009) Mental Health Gap Action Programme (mhGAP): Guidelines on

Interventions for Mental, Neurological and Substance use Disorders, Geneva: WHO.World Health Organization (WHO) (2010) Community-Based Rehabilitation Guidelines, Geneva: WHO.World Health Organization (WHO) and World Bank (2011) World Report on Disability, Geneva: WHO.Zaidi, A. and Burchardt, T. (2005) ‘Comparing Incomes When Needs Differ: Equivalization for the Extra

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PART IV

Disability studies andinterdisciplinarity

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THE METANARRATIVEOF DISABILITY

Social encounters, cultural representation andcritical avoidance

David Bolt

Cultural disability studies is an explicitly interdisciplinary field that synthesises scholarship indisability and various forms of cultural production. In order to probe that interdisciplinaritythis chapter considers two interrelated questions. First, does the study of culture deepen ourunderstanding of disability? Second, does the study of disability enrich our understanding ofculture? To this end the avoidance of social encounters between disabled people and non-disabled people is analysed and theorised with reference to the influence of cultural repre-sentation. This discussion helps to explain how cultural disability studies can reduce the socialimpact of stereotypes (Hoffmann and Flamich 2016), and why disability studies increasinglypertains to cultural factors. But also illustrated is the fact that a critical appreciation of dis-ability can greatly inform the study of cultural representations, be they literary, filmic, artistic,musical or whatever. The two interrelated questions raise a challenging issue, for althoughthe field of cultural disability studies is undoubtedly growing, too often it continues to beignored within the humanities. In effect, the avoidance of social encounters is duplicated inacademia on a curricular level, a state of affairs thus termed critical avoidance.

Critical avoidance is underpinned by (and embodied in) social encounters of disability. Theencounters might involve nothing more than passing someone in a corridor, standing next tosomeone in a queue, sharing a table with someone in a café, and so on. These and other suchmundane meetings between virtual or complete strangers are explored in the chapter withreference to mid-twentieth-century sociology and social psychology, classic studies that pre-dicate my reading of a selection of first and second wave works of cultural disability studies.The sources resonate with my experiential knowledge and provide a basis for an understandingof the metanarrative of disability as a problematic presence in social encounters.

The emergence of cultural disability studies

If only to contextualise the argument it is helpful to remember a few things about thebeginnings of the field. It has now been nearly quarter of a century since Lennard Davis’sEnforcing Normalcy: Disability, Deafness, and the Body (1995) defined disability as a term that

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should have been added to the race, class and gender triad. One of the key points made in hisfoundational work was that while many ‘progressive intellectuals’ decried racism, sexism andclass bias, it did not occur to many of them that the very foundations on which their infor-mation systems were built, their very practices of ‘reading and writing, seeing, thinking, andmoving’ were ‘laden with assumptions about hearing, deafness, blindness, normalcy, para-plegia, and ability and disability in general’ (Davis 1995: 4–5). Indeed, when it came toinformed critical theory, the humanities had been anything but inclusive of disability. Notsurprisingly, then, Davis was considered a pioneer for bringing poststructuralist cultural his-tory to bear on the concept of disability, for giving ‘disability studies greater historical andtheoretical depth’ and poststructuralism a ‘much-needed specificity with regard to theories ofthe “normal” body’ (Bérubé 2002: x). Several comparably significant monographs werepublished contemporaneously (e.g. Brueggemann 1999; Couser 1997; Garland-Thomson1997; Kleege 1999), but Davis was singled out when his contribution came to be anthol-ogised in a text set at numerous universities around the world, irrespective of whether or notthey were particularly interested in disability studies. That is to say, one measure of his successin helping to move disability studies ‘from sideshow to midway’ was the Norton Anthology of

Theory and Criticism, which juxtaposed excerpts from Enforcing Normalcy with the work ofHomi Bhabha, Henry Louis Gates, Dick Hebdige and Judith Butler, among others (Bérubé2002: x–xi). Albeit tentatively, disability was starting to be recognised as a theoretical basis forcultural criticism alongside gender, ethnicity, sexuality, class, and so on.

Edited collections made an important contribution to the emerging field. Most obviously,the success of Enforcing Normalcy was followed by that of the Disability Studies Reader (Davis1997). Currently celebrating its fifth edition, the book set out to place disability in a political,social and cultural context. In so doing, it brought together the work of eminent scholarssuch as Rosemarie Garland-Thomson and David Mitchell. I mention these two authors inparticular because around the same time they too were involved in editing foundationalworks of cultural disability studies, namely Freakery: Cultural Spectacles of the Extraordinary Body

(Garland-Thomson 1996) and The Body and Physical Differences: Discourses of Disability

(Mitchell and Snyder 1997). Such anthologies continued to constitute a driving force at thestart of the twenty-first century (e.g. Snyder et al. 2002; Wilson and Lewiecki-Wilson 2001).Indeed, the multidisciplinarity, if not the interdisciplinarity, of the emerging field wasexemplified in Disability/Postmodernity: Embodying Disability Theory (Corker and Shakespeare2002). Juxtaposing the work of scholars based in the social sciences (e.g. Peter Beresford, DanGoodley, Carol Thomas, Nick Watson) and the humanities (e.g. Johnson Cheu, PetraKuppers, Shelley Tremain), the aim of this controversial volume was to address what in somecircles was deemed a hindrance to disability studies, namely a failure to engage with post-structuralism and postmodernism. That is to say, although it was edited by two eminentsocial scientists (Tom Shakespeare surely has the highest profile of all disability scholars in theUnited Kingdom), the much read collection was of explicit relevance to colleagues whowork in the humanities.

There was something of a second wave when the first decade of the century also spawneda number of important monographs (e.g. Couser 2003; Kuppers 2003, 2007; McRuer 2006;Murray 2008; Nussbaum 2003; Quayson 2007; Serlin 2004; Snyder and Mitchell 2006). Thesecond wave, like the first, benefited hugely from the exemplary work of David Mitchell andSharon Snyder, most obviously Corporealities: Discourses of Disability (University of MichiganPress). This series endorsed (and today, more than 25 volumes on, continues to endorse) abroad range of work on representational meanings of disability (e.g. Couser 2009; Davidson2008; Deutsch and Nussbaum 2000; Mitchell and Snyder 2000; Sandahl and Auslander 2005;

The metanarrative of disability

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Siebers 2008; Stoddard Holmes 2004; Tremain 2005). What is more, it paved the way forcomparable projects such as Representations: Health, Disability, Culture and Society (Murray andMcRuer 2008), which set out to make interdisciplinary research on cultural representationsof health and disability more widely accessible, not to mention the more focused book seriesLiterary Disability Studies (Bolt et al. 2015).

It was amid this progress that the need for a specialised periodical was addressed by what isnow known as the Journal of Literary & Cultural Disability Studies (JLCDS). Launched at theinaugural conference of the Cultural Disability Studies Research Network, published byLiverpool University Press, selected for Project MUSE, briefly affiliated with Lancaster Uni-versity’s Centre for Disability Research and now permanently based in Liverpool HopeUniversity’s Centre for Culture and Disability Studies, JLCDS furthered progress in the fieldwith a number of special issues (e.g. Barker and Murray 2010; Burke 2008; Davidson 2007;Ferris 2007; Kleege 2009; Kuppers and Overboe 2009; Snyder and Mitchell 2010). Alongwith the general editions, these special issues plugged a gap that was left unfilled by otherjournals, although it must be acknowledged that Disability & Society, for example, had alreadypublished some articles that came under the rubric of cultural disability studies (e.g. Hevey1993; Shakespeare 1994; Waltz 2005). Indeed, I have generally found colleagues in disabilitystudies willing to accommodate those of us who focus on cultural representation – the invi-tation to write the present chapter being a case in point.

Does the study of culture deepen our understanding of disability?

Davis’s Disability Studies Reader brought together a number of authors who in some waysgrounded the field of cultural disability studies, including Mikhail Bakhtin, Judith Butler,Jacques Derrida, Michel Foucault, Sander Gilman, Kaja Silverman and Susan Sontag, as wellas the sociologist to whom I now turn, namely Erving Goffman. Most poignantly, Goffman’swell-known book, Stigma: Notes on the Management of Spoiled Identity (1963), recognises that‘all human differences are potentially stigmatizable’ and that ‘stigmas reflect the value judg-ments of a dominant group’ (Coleman 1986: 217). Importantly, he also problematises thevery notion of the norm by asserting that there is just one unblushing male in America: ‘ayoung, married, white, urban, northern, heterosexual Protestant father of college education,fully employed, of good complexion, weight and height and a recent record in sports’(Goffman 1963: 153). This profile may be understood as the subject position of the Americanmale, a narrow ideal by which others would judge themselves and inevitably would findthemselves wanting.

Goffman is particularly interested in what happens when so-called normals and stigmatisedpeople are in one another’s company, be it in an intimate or crowded setting. He goes so faras to assert that when we enter one another’s immediate presence, especially if we attempt toengage in conversation, there occurs ‘one of the primal scenes of sociology; for, in manycases, these moments will be the ones when the causes and effects of stigma must be directlyconfronted by both sides’ (1963: 24). It is in this primal scene of sociology that I detect theinfluence of cultural production.

So intense is the encounter between normals and the stigmatised that its very anticipationmay lead to avoidance, the full significance of which is illustrated in Gordon Allport’s TheNature of Prejudice (1954). This classic study, informed by the horrors of Nazi Germany, pro-poses that the behavioural component of prejudice has five incremental stages: antilocution,avoidance, discrimination, physical attack and extermination (ibid.). While the vast majority ofthe human race has always been opposed to extermination, the same cannot be said of


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antilocution or avoidance. The problem is that the second stage of prejudice is predicated onthe first, the third on the second, and so on, meaning that ‘activity on one level makes transi-tion to a more intense level easier’ (ibid.: 15). Most obviously, Hitler’s antilocution led manyGermans to avoid their Jewish neighbours, made it easier to enact laws of discrimination that,in turn, made anti-Semitic attacks seem somehow acceptable, the final stage being the con-centration camps in which millions died. Of course, avoidance does not necessarily lead to themore extreme forms of prejudicial behaviour but, like antilocution, it contributes to a divisiveethos of social exclusion that is often bolstered by cultural representations. I therefore adaptAllport’s model by arguing that pejorative cultural representations are, at the very least, on a parwith antilocution.

Not only anthologised in the Disability Studies Reader, Goffman’s Stigma is also revisited inRosemarie Garland-Thomson’s Extraordinary Bodies: Figuring Physical Disability in American

Culture and Literature (1997). Although understandably critical of the assumption that femalenesshas no part in the proposed normative subject position, Garland-Thomson expands onGoffman’s conception of normals productively. She coins the term ‘normate’ in a powerfuldesignation of the ‘veiled subject position of cultural self, the figure outlined by the array ofdeviant others whose marked bodies shore up the normate’s boundaries’ (1997: 8). Thisneologism denotes the ‘constructed identity of those who, by way of the bodily config-urations and cultural capital they assume, can step into a position of authority and wield thepower it grants them’ (ibid.: 8). The sense of elevated status is so ubiquitous that peopleoften aspire desperately to accord with the normate subject position and try to fit whatconstitutes a prohibitively exclusive ideal. This being so, although Garland-Thomson doesnot go so far as to invoke a single exemplary person, she does refer to a narrowly definedprofile that describes only a minority of real people.

Goffman’s primary scene of sociology becomes, for Garland-Thomson, more specificallyan encounter between normate and disabled people. She acknowledges that in any initialmeeting a large amount of information must be organised and interpreted, that each person‘probes the explicit for the implicit, determines what is significant for particular purposes, andprepares a response that is guided by many cues, both subtle and obvious’ (1997: 12).However, she asserts, if one person has an impairment the interaction tends to be particularlystrained because the other may feel fear, pity, fascination, repulsion and/or surprise; feelingsthat cannot be expressed in a society that has aspirations to political correctness. As well asexperiencing this cognitive dissonance it is extremely likely that the non-disabled person willnot know how to act towards the disabled person, ‘how or whether to offer assistance;whether to acknowledge the disability; what words, gestures, or expectations to use or avoid’(ibid.). It is acknowledged that the disabled person may anticipate and perhaps fear sub-sequent avoidance, but the encounter is deemed especially stressful for the non-disabledperson who is likely to be less skilled when dealing with such situations.

The concept of the normate is one of the main sources for Ato Quayson’s Aesthetic Ner-

vousness: Disability and the Crisis of Representation (2007). The encounter between the normateand disabled person thereby becomes a ‘primary scene of extreme anxiety’ (ibid.: 17). Ofparticular interest are the various relational elements that disclose themselves not as power butas anxiety, dissonance and disorder. Following Garland-Thomson, Quayson recognises cor-poreal difference as part of a structure of power that is based on the normate’s unmarkedregularities, but it is stressed that the impulse to categorise during interpersonal encounters ispart of an assumed ideal of order. In relation to my understanding of the metanarrative ofdisability it is especially important to note that, for Quayson, what Garland-Thomson callsthe probing of the explicit for the implicit constitutes part of a quest for an order that is


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thought to lie elsewhere. That being so, the impaired body may be ascribed metaphysical ordivine significance. But because impairment is often deemed to be a manifestation of dis-order, the normate impulse for order must be revaluated and aesthetic nervousness results.Indeed, the normate position is necessarily insecure, given that everyone is subject to radicalcontingency, and disabled people tend to be perceived socially as reminders of that reality.The vulnerability and needs to which disabled people are so often reduced in fact speak ofthe human condition more broadly. Hence, disabled people are likely to know what it meansto be tailed by the phrase ‘there but for the grace of God go I’.

The other source for Quayson’s notion of aesthetic nervousness is the reformulation ofliterary history from a perspective informed by disability studies (e.g. Davis 2002; Mitchelland Snyder 2000). Although not really departing from Quayson, I focus on issues of narrativein particular. This is largely because in my capacity as editor-in-chief of JLCDS I havenoticed that many submissions explore and illustrate Mitchell and Snyder’s concept of nar-rative prosthesis. Within the field, disability is often recognised as the ‘crutch’ on whichnarratives ‘lean for their representational power, disruptive potentiality, and analytical insight’(Mitchell and Snyder 2000: 49). While the concept of narrative prosthesis is illustrated fruit-fully with reference to works of literature in both the foundational monograph and the manyderivative studies, it should be stressed for the purpose of this chapter that such literaryexamples are by no means exhaustive. After all, any discourse may be placed under the rubricof narrative, from which it follows that any discursive dependence on disability may beunderstood in terms of narrative prosthesis. I would certainly go so far as to say that the termis applicable to any instance of a narrative in which impairment or disability is inserted foreffect. We might bring to mind the work of William Faulkner, J. D. Salinger, Harper Lee,Ken Kesey, and so on, following the lead of Mitchell and Snyder. But it might also be thecase that a student invokes the tutor’s impairment when querying a grade. It might be thatpolitical parties are described as autistic or retarded. It might be that a country is said to becrippled by war or natural disaster. It might be that someone is deemed blind to the facts,that her, his or their unanswered question has fallen on deaf ears. Indeed, when thinking ofdisability as a device on which authors depend for their ‘disruptive punch’ (Mitchell andSnyder 2000: 49), it might well be disabling jokes that spring to mind. The list of familiarexamples could go on and on, the key commonality being that nothing informed is saidabout the lives of the people invoked.

Given this unawareness of (or disregard for) experiential knowledge and agency, it is per-haps unsurprising that when normate thoughts do turn to impairment it is often associatedwith a story, placed in a narrative (Davis 1995). Thus, in an encounter between a disabledperson and a non-disabled person, according to Davis’s account of the ways in which nor-malcy is enforced, one’s impairment may be rendered part of a Bakhtinian chronotope – thatis to say it becomes embedded in a story, part of a time-sequenced narrative. Irrespective ofthe facts of the matter, a person is assumed to have been born quadriplegic, or to have beenblinded in an accident, or to have become deaf as a result of some illness, and so on. Thedisabled person is thereby objectified, framed in a narrative that bolsters the normate subjectposition. In effect, the disabled person is written into the story of the non-disabled person.The latter assumes a kind of authorship, indeed authority, as the former is told rather thanasked about her, his or their own life.

When thinking of discourse that bolsters the normate subject position we should notforget the way in which disabled people are often left or squeezed out of our own con-versations. Does he take sugar? The question is now a cliché, but the underpinning attitude isby no means confined to previous decades (let alone centuries). Just before I wrote the first


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version of the present chapter in 2012, for example, a colleague and I accompanied one ofour disability studies classes on a visit to a resource centre for people who have visualimpairments. It was our intention to facilitate a wider understanding of practical matters butsomething far more profound was demonstrable within a few minutes of entering the centre.Once the brief introductions were over, having noticed my visual impairment, the person incharge turned to my colleague and asked if she would be taking me around. On this occasionI was not that bothered about the erroneous assumption that because I was using a guide dogI would necessarily be unable to browse unassisted. In fact, the assumption happens to bequite correct in my case (which is why my colleague had already indicated to me that shewas more than happy to provide any necessary assistance). Nor did I give that much thoughtto issues raised by the problematic application of the verb taking. Rather, the point of interestwas my exclusion from the normate discourse, especially as it was initiated by someone we allexpected to be fairly appreciative of disability. The resource centre, by definition, was meantto empower people who have visual impairments. However, the person in charge unwit-tingly subjected me to a discursive form of avoidance – something I deem pertinent for aplace in the adaptation of Allport’s model of prejudicial behaviour.

The critical point about interpersonal encounters is that when one person has a visibleimpairment it tends to dominate the other’s processing of perceptions; to have a disruptiveinfluence on her, his or their initial reactions: ‘Perhaps most destructive to the potential forcontinuing relations is the normate’s frequent assumption that a disability cancels out otherqualities, reducing the complex person to a single attribute’ (Garland-Thomson 1997: 12).This normate reductionism may explain my encounter in the resource centre, for example,where communication skills and indeed my very agency were both obscured by theapparent significance of visual impairment. Of course, like many disabled people, I couldlist innumerable examples that are far more important and/or interesting. I refer to thisparticular instance largely because it was witnessed by several budding disability scholars(effectively during a lesson), but also because the context was overtly supportive of disabledpeople.

What I argue about such interpersonal encounters is that as well as the normate assumptionthat impairment cancels out other qualities, the reduction of a complex person to a singleattribute, there is a consequential but apparently immediate invocation of extraneous details.Not simply reduced to the facts of, say, visual impairment, the complex person is lumberedwith what have been called the ‘old vestments’ of blindness (Kuusisto and Kuppers 2007: 74).In other words, people who have impairments are frequently keyed to a metanarrative ofdisability that is shaped by cultural representations.

What I mean by a metanarrative of disability is the cloud of a story under which those ofus who have impairments often find ourselves, an overriding narrative that seems to displaceagency. With reference to one element of the metanarrative of blindness (Bolt 2014), forinstance, it has been asserted that ‘Although the number of blind beggars is rather small, it isthe image of the beggar that is most commonly called to mind by the words “blind man”’(Monbeck 1973: 8). This association is bolstered by two aspects of cultural production. First,there is the recurrent use of tropes such as the blind beggar in Robert Louis Stevenson’sTreasure Island (1883) and J. M. Synge’s The Well of the Saints (1905). Second, there is criticalavoidance, the general lack of informed tropological criticism in the humanities. That is to say,the absence of critical readings that are appreciative of disability effect a covert perpetuation ofrecurrent tropes. After all, while there is no denying that stereotypes ‘in life become tropes intextual representation’ (Garland-Thomson 1997: 11), it is the lack of profound if not generalengagement with the tropes that ensures their return.


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Having mentioned Stevenson, Synge and Monbeck, dated sources from the nineteenthand twentieth centuries, I should perhaps emphasise that like the does he take sugar clichéthe image of the blind beggar cannot be dismissed as a thing of the distant past. Just a fewdays before my visit to the resource centre, I encountered another pertinent instance ofnormate reductionism. I had arranged to meet a friend for a few drinks at a bar in the citycentre. I allowed half an hour for the journey but, owing to an unexpectedly low volume oftraffic, I arrived 20 minutes early. Because the bar was very noisy, making it difficult for meto order a drink and/or find somewhere to sit (relying in part, as I often do, on auditorycues), I decided to wait outside. After ten minutes or so someone walked past, paused andthen turned back. I stepped forward slightly in case it was my friend, but it was a strangerwho indicated in a non-aggressive tone that he was trying to hand me something. I imaginedit must be a flier of some description (material not readily accessible to me) and so did notraise my hand. He seemed perplexed at my lack of engagement, pausing again before askingif I was not collecting for the blind. At that point a proverbial penny dropped for both of us.I explained that I was just waiting for someone and he apologised as he walked away. In themind of the stranger, I was evidently reduced to the characteristic of visual impairment butalso keyed to the metanarrative in which the blind beggar is a stock character. My verypresence was implicitly explained by a cultural construct.

As well as by others, those of us who have impairments may be keyed by ourselves to themetanarrative of disability. For instance, although well aware of the stereotypical possessionof extraordinary senses, I cannot help feeling a little pleased when someone notices if I amthe first to hear the arrival of a taxi at the end of an evening with friends. Given that in suchsituations I am accustomed to listening for the sounds of the engine and closing door, it is notreally surprising if I am aware of the taxi’s arrival before the driver rings the doorbell. That isthe fact of the matter, but for a fleeting moment I may secretly embrace the so-called positivestereotype and all its cool mysteries. What is more, I am then likely to save myself from theinternal displacement of identity by nervously cracking some joke about the extraordinaryhearing of the blind. In other words, albeit through irony, I invoke the metanarrative ofdisability overtly as well as covertly.

Before leaving these anecdotes aside, I should add a few details to expand a little on theircontext. For more than 30 years my visual impairment has been overt insofar as I have usedguide dogs for mobility. In that time I have only experienced two of the ‘blind beggar’encounters and, just for the record, on neither occasion was I holding a can or a hat oranything that could have been mistaken for a begging bowl. The other situations, however,are far more common. I am certainly spoken about, rather than spoken to, on a fairly regularbasis and must admit to internalising various stereotypes from time to time. Although in suchinstances I tend to be reduced not only to the characteristic of visual impairment but also tomy own laughter, thereby demonstrating the point that ‘real social relations are alwaysdynamic’ (Garland-Thomson 1997: 11), I do appreciate that cultural representations mayhave a profoundly disturbing and disabling influence on those of us who have impairments.After all, is it not the idea rather than the lived reality of acquiring an impairment that has thegreater pejorative impact on the person? Are these ideas not frequently given currency incultural representation?

It surely follows that the study of culture does indeed enrich our understanding of disability.Whichever models we invoke, be they tragic, charitable, religious, individual, medical, social oraffirmative, cultural factors cannot be ignored. However we choose to approach disability, thefact remains that people who have impairments are frequently keyed to a metanarrative bywhich all is supposedly explained. In relation to the British social model, for instance, there


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cannot be a more ardent proponent than Colin Barnes, but it would be grossly erroneous tosay that his work does not recognise cultural factors (e.g. Barnes 1997, 2008; Barnes andMercer 2003). It has been argued that the social model reveals subliminal cultural assumptionsabout disabled people, that it raises the possibility that non-disabled people may ‘ultimately bebrought to recognize the sources of the constructedness of the normate and the prejudices thatflow from it’ (Quayson 2007: 17–18). This model is generally invoked to reveal discrimination,the third stage in Allport’s model of prejudicial behaviour, and the more extreme stages, too,have cultural components. Insofar as it pertains to decisions about the type of person whoinhabits the world, for example, selective abortion must be said to fall under the rubric ofextermination. Women are ‘expected to implement the society’s eugenic prejudices by“choosing” to have the appropriate tests and “electing” not to initiate or to terminate preg-nancies if it looks as though the outcome will offend’ (Hubbard 1990: 199). The point, here, isthat this offence, this expectation and these prejudices are all perpetuated by the recurrenttropes of cultural representation.

Does the study of disability enrich our understanding of culture?

Given the ways in which those of us who have impairments may key and be keyed to ametanarrative as we go about our day-to-day lives, the study of disability is bound to enrichthe understanding of culture. If stereotypes become tropes in textual representation, does itnot follow that studies of the one enhance those of the other? The hegemonic aspect ofrepresentations of disability is every bit as important and interesting as those of gender, eth-nicity, class, sexuality, and so on. Indeed, without key concepts such as ableism, autisticpresence, cripistemology, narrative prosthesis and the normate subject position, the study ofcultural representation would be both dated and deficient. These and other such concepts,models and theories facilitate informed critical engagement with the numerous portrayals ofdisability that overtly and covertly influence society. The more we learn about disability, themore we discover about cultural representation.

This is where the problem of critical avoidance becomes evident. Generally, as I have said,those of us who work in disability studies do not deny the influence of cultural representa-tions. On the contrary, while cultural disability studies is growing as an interdisciplinary fieldof enquiry (e.g. within its first decade the publication of JLCDS has grown from two to threeto four issues), it still tends to be the case that scholars based in the humanities do not engagewith disability studies. These colleagues are interested in the character of time and place butnonetheless miss or skip key historical facts about disability (Burdett 2016); in Scottish studies,to give but one example, the application of literary criticism fails to recognise disability as alegitimate category of analysis, yet benefits from a commitment to approaches informed bygender, class and race studies (Introna 2016). Disabled characters frequent most if not allprimary texts studied in the humanities but that level of representation is not reflected in thecritical responses; it is often the case that the topic of disability is avoided, and generally sothat any engagements are not informed by disability studies.

The understanding of culture is not exclusive to the humanities, for it demonstratesinformal and formal education, an academic pursuit no less problematised by critical avoid-ance. In classrooms around the United Kingdom, for example, the guided reading schemesthat play such a major role in a child’s learning experience are often bereft of disability(Mapley 2015), as are the textbooks with which many of the classes engage (Hodkinson2016). Insofar as critical avoidance occurs when the social avoidance of disability is replicatedin the classroom as well as the curriculum, it is also manifest when learners labelled as dyslexic


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are subjected to ableist pedagogies away from their peers, represented as literacy strugglers ifnot failures (Barden 2016). Indeed, perhaps most surprisingly, academics who teach bothspecial educational needs (Penketh and Waite 2016) and social work (Boxall and Beresford2016) are themselves often guilty of critical avoidance – of failing to let classes and coursesbenefit from understandings informed by disability studies.

Conclusion

What I draw from all this is a way forward for the field of cultural disability studies, namelycurricular reform. Focusing on issues of avoidance, this chapter illustrates that disability studies issupplemented by cultural studies and vice versa. The absence of one from the other, therefore,in an irresistibly Derridian turn, reveals deficiency. Accordingly, those of us who work indisability studies are generally open to research and scholarship on literary and other culturalfactors. Those of us based in the humanities, however, are likely to tell a very different story,for critical avoidance is still the general rule. The chapter considers how social encountersbetween disabled people and non-disabled people may be problematic, partly because the everpresent metanarrative of disability contains an independence-dependence, usefulness-uselessness,needed-needy, helper-helped binary logic. What this means in the first instance is that manyassumptions may be made about the disabled person, positing the non-disabled person in therole of provider. The frequently overlooked point is that if and when these roles are realisedthey are also likely to be traded, a reversal that itself causes anxiety for some non-disabledpeople. Helping the proverbial blind man across the road is one thing, but recognising theachievements, ideas, knowledge, influence, experience or authority of someone who is disabledcan prove profoundly difficult for some non-disabled people, as though a fundamental orderwould thereby be disrupted. It is this very reluctance that becomes manifest in the humanitieswhen the work of disability studies is dismissed as irrelevant. Much as disabled people deal withprejudicial behaviour, including avoidance, on a daily basis, those of us who work in disabilitystudies must take the initiative in making and/or maintaining links with the humanities (not tomention other realms of academia). As an explicitly interdisciplinary field, cultural disabilitystudies informs and is informed by the humanities as well as the social sciences, yet this is fartoo rarely recognised in the work of colleagues in literary studies, cultural studies, film studies,media studies, and so on. Indeed, many colleagues in the humanities are still unaware of what ismeant by disability studies, let alone the intrinsic relevance to their own work. In this climate,critical avoidance is a matter of course.

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25

WHAT CAN PHILOSOPHY TELLUS ABOUT DISABILITY?

Simo Vehmas and Christopher A. Riddle

Introduction: what can we tell you about philosophy and its uses inunderstanding disability?

It makes good sense to assume that philosophy can tell us something important about disability.After all, philosophers have since antiquity been considered lovers of wisdom who have a deeperunderstanding of the way things are than do regular mortals. The word ‘philosophy’, however,has various meanings nowadays, and it is often used to refer to the general scheme of things ofvirtually any human activity. People talk about the philosophy of tennis coaching, charity work,guitar solos, wine tasting, selling nail varnish, and so on. The word ‘philosophy’ implies pro-foundness related to the activity in question: guitar solos, for example, are not necessarily just aform of entertainment, they can also be pathways to deity. Thus, it seems that before we can goany further, we need to define ‘philosophy’. And this, exactly, is when things get complicated.

Briefly, philosophy examines the conceptual boundaries of human thought by means ofexamples and counter-examples. This means that ‘it is done just by asking questions, arguing,trying out ideas and thinking of possible arguments against them, and wondering how ourconcepts really work’ (Nagel 1987: 4). Philosophy thus relies on thought, not on experi-ments or observation like science, nor does it have formal methods of proof like mathematics.Philosophy can be described as a way of thinking whose distinctive features are its use oflogical argumentation as well as the analysis and clarification of concepts. Philosophers areusually concerned with questioning and understanding common ideas that all of us use everyday without thinking about them. For example, disability scholars and activists often talkabout the oppression that people with disabilities experience. Philosophers, however, wouldtypically respond to this by asking by virtue of what should something count as ‘oppression’or ‘disability’, and what makes a group of people an entity that can be meaningfully called‘people with disabilities’. Philosophy investigates ideas that are taken for granted most of thetime with an aim to push our understanding of the world a bit deeper. Virtually any con-ceivable human thought can be questioned and scrutinised in philosophy, which makes it adizzying and often tiring activity whose results usually do not go unchallenged for long (ibid.:5; Warburton 1992: 1–2).

Thus, the basic use of philosophy for disability studies is to question and carefully examineits essential concepts and conceptions, their rational credibility, logical tenability and

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normative soundness. Academic philosophy can be defined and divided in various ways butone traditional way is to divide it into ontology or metaphysics (studying the nature ofbeing), epistemology (the study of knowledge), philosophy of science and logic (studying thenature of scientific knowledge and thinking) and, finally, ethics and political philosophy(studying practical and normative questions). Our discussion in this chapter concentrates onthe ontology of disability, ethics and the moral significance of disability and, finally, politicalphilosophy and its implications for disabled people’s social status.

Philosophical ontology and disability theory

Disability studies perspectives typically reject essentialist views of human beings. What isconsidered as characteristically ‘human’ or ‘normal’ for the physical or mental make-up ofbeings does not depend on human essence (whatever that might be), but on culturally pro-duced norms. Humanity and normality are socially constructed. Accordingly, as much asbodies and impairments are biological entities, they are also cultural and social entities: ‘theimpaired body has a history and is as much a cultural phenomenon as it is a biological entity’(Paterson and Hughes 1999: 600). Social constructionism is one crucial ontological andepistemological basis of disability studies and, consequently, it has become the framework forunderstanding what disability is all about, as well as how one construes information about it(Albrecht 2002; Barnes et al. 1999: 93–95; Linton 1998: 37–45; Taylor 1996).

Social constructionism has been a politically liberating stance because it has provided a basisto question the dominance of medicine in explaining disability. The human world is aninterpreted, construed world. Yet it would be intellectually and politically disastrous to con-clude that impairments are not primarily or even secondarily physical facts and that nothingexists until it is spoken of or written about. Views of the ontology of disability are politicallysignificant because the way in which phenomenon is understood inevitably directs institu-tional responses to it. This partly explains some of the heated theoretical debates in disabilitystudies (Oliver 2007; Shakespeare 2006; Thomas 2008; Vehmas 2008): the one with the beststory is supposedly seen to win the political battle as well. We will now briefly explain theontological structure of disability, drawing heavily on John Searle’s (1995) theory of socialontology, and clarify the conceptual difference between impairment and disability.

First, an important distinction between the senses of ‘objective’ and ‘subjective’ as forepistemology and ontology must be recognised. The epistemic sense of the objective-subjectivedistinction refers simply to discussions about our judgements of how things are in the worldand their credibility. A judgement is subjective if its correctness depends on the attitudes,feelings or points of view of the maker and the hearer of the judgement. A judgement isobjective if its truth is settled by facts in the world that are independent of the maker andhearer of the judgement. In other words, if a statement is objective in the epistemic sensethen there is an objective fact in the world that makes it true (Searle 1995: 8).

In the ontological sense, objective and subjective are predicates of the entities in the world,the types of entities, and their mode of existence. Objective entities exist independently ofany perceiver or mental state, whereas subjective entities are dependent on perceivers andmental states. So, in the ontological sense, pains are subjective entities because their existencedepends on a subject’s experience. But mountains, for example, are ontologically objectivebecause their mode of existence is independent of any perceiver; mountains would stay inthe world even if all the humans and other subjects with senses disappeared from the Earth.Here, we need to distinguish between the senses of objective and subjective, that is, we canmake epistemically subjective statements about entities that are ontologically objective, and

What can philosophy tell us about disability?

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similarly, we can make epistemically objective statements about entities that are ontologicallysubjective. For example, the statement ‘Individuals with spina bifida are an oppressed groupof people’ is about an ontologically objective entity, but makes a subjective judgement aboutit. On the other hand, the statement ‘The fact that my child has spina bifida causes meemotional distress’ reports an epistemically objective fact in the sense that it is made true by theexistence of an actual fact that is not dependent on any opinion of observers. Nevertheless, thephenomenon itself, the actual emotional distress, has a subjective mode of existence (Searle1995: 9–11).

Various entities thus have different kinds of modes of existence, and they can exist inde-pendently from each other. Spina bifida is not inherently connected to oppression becausethe existence of a neural tube defect is an intrinsic feature that exists independently of ourviews about it. Spina bifida does, however, include observer-relative features as well; the kindof features that exist relative to observers. Oppression, for example, is fundamentally rootedin human experience and can only exist if subjects with experiences exist. The observer-relative features of the world do not add any material objects to reality, but they can addepistemically objective features to reality where the features in question exist relative tohuman beings (Searle 1995: 9–11).

If one is not willing to commit to completely nihilistic premises, we do know for a factthat certain statements are either true or false. For example, it is true that the Earth revolvesaround the Sun. It is also true that spina bifida is caused by the failure of the fetus’s spine toclose completely during the first month of pregnancy. These are the kinds of facts, or truths,that exist independently of human beings and their views. Searle calls them brute facts thatare distinct from institutional facts, which can exist only within human institutions. Butbefore we can name or agree on any facts, that is, to have institutional facts, we have to havebrute facts. In order to have money, games, schools, medical diagnoses or any other humaninstitution, for each of which there must be some physical realisation, we must have somebrute fact on which we can impose its social function. All sorts of substances can be money.Whether it is bits of metal or pieces of paper or magnetic traces on plastic cards, it has to existin some physical form. Institutional facts are hierarchically structured and they exist on top ofbrute facts, as it were (Searle 1995: 34–35; for some qualifications see Searle 2010: 19–24).

According to the British social model of disability, disability as a social phenomenon isabout oppression and discrimination against people with impairments (e.g. Oliver 1990). Bydefinition, then, disability as a social phenomenon does not include a mere institutional levelof facts, but a brute level of facts as well, namely impairments. Disability cannot thusbe satisfactorily conceptualised purely in terms of institutional facts, such as oppression. Theproblem with some formulations in the social model tradition is that they downplay thesignificance of the inevitable physical foundation of social phenomena, with the result thatthese accounts are based on the upper stairs of the ontological ladder, as it were (see, forexample, Shakespeare 2006: 38–43). Thus, ignoring the physical basis of disability resultsontologically in an insufficient, or even a flawed, account.

Attempts to understand the ontology and construction of the phenomena of impairmentand disability can be primarily descriptive without any political or other normative commit-ments (Riddle 2013a). Rather, metaphysical endeavours should involve first and foremost amethodological commitment to get our ontology right. After that, we have the necessarytools to build agendas to change the possibly oppressive status quo. An ontology thatemphasises both the physical origins of impairment and the relational nature of disabilityenables us to eradicate both organic and social factors that have resulted in people’s distress.In other words, we can be more flexible and efficient in aiming to increase equality and


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well-being of all individuals in society when we recognise whether people need eitherphysical responses (e.g. operations and therapies), social responses (e.g. a more accessiblebuilt environment), or both.

As phenomena, disability and impairment consist of both natural and social factors. Impairmentis a class name for natural properties that, depending on the context, in part cause or constitutefunctional limitations – although the limiting implications of the property in question can in partbe explained in social terms. Impairment always involves a physical element, a condition of somesort that is seen as undesirable regarding people’s organic or social functioning. Thus, impairmentis a physical or organic phenomenon whose identification and definition is determined culturallyand socially; it is inevitably about attaching some meaning to individual properties. Disability,however, is an ontologically subjective (mind-dependent) and institutional phenomenon thatconsists in the relation between the natural properties or features on the one hand, and thesurrounding social and physical world on the other. Disability is inevitably, and self-evidently,a social construct. What distinguishes disability from impairment is that it can become dis-sociated from people’s physical conditions. Disability often involves very general socialstructures and mechanisms that cannot be reduced to people’s physical or mental character-istics. Disability has started to have a life of its own, as it were (Vehmas and Mäkelä 2009).

Thus, disability as a social phenomenon does not necessarily require impairment in theproper sense; some individual features and ways of acting can become labelled as impairmentsalthough they may have no verifiable organic basis. Sometimes the ontological formation ofinstitutional facts may precede the recognition of brute facts, meaning that impairments areontologically objective physical phenomena that may epistemically come into existence aftera disability has been classified. For instance, people with an extra chromosome 21 had existedlong before the physiological cause of the characteristic features of these people was recog-nised. Similarly, various learning disabilities have come into existence due to the growingcognitive demands of contemporary societies. Some of these disabilities may very well havean organic basis, but the interest to recognise organic factors (i.e. brute facts) that may causethese disabilities is based on social demand.

Thus, impairment and disability include both physical and social dimensions. Spina bifida,for example, is a medical matter, and the social participation of a person with spina bifida isboth a medical and a political matter. In other words, impairment in general is often both abrute fact and an institutional fact, and disability is an institutional fact based on the hierarchyof facts which all ultimately rest on brute facts.

Recently, however, there has been a challenge to so-called interactional models of dis-ability that explore how impairments interact with disabling barriers (Shakespeare 2006).Generally, this challenge emanates from political concerns about what an acknowledgementof impairment might imply for disability rights movements. More specifically, a somewhatnovel argument has been advanced that suggests that disability is simply another way of beinga minority and not an experience that automatically or necessarily makes one worse off thanan otherwise similarly situated able-bodied individual (Barnes 2016).

This ‘mere difference’ view suggests that disability is, in fact, neutral with respect to itsimpact on well-being. This is in contrast to interactional models of disability that claim thatimpairment is not neutral, but does not necessarily involve a harm (Vehmas and Shakespeare2014). Importantly though, mere difference understandings of disability need not deny thatdisability or impairment could diminish intrinsically valuable aspects of flourishing (Barnes2016). In other words, disability can involve the lack of an intrinsic good, while not beingmerely the lack of that good. This view retains a good deal of the valuable political aims of theBritish social model, while acknowledging the brute facts associated with impairment.


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Unsurprisingly, this contentious view has not gone uncontended by those who insist thatthere is no compelling evidence to suggest that disability does not involve a necessary harm(for example, see Bogner 2016). How hotly these ontological questions are debated isbecause a good deal is at stake philosophically in establishing the category of disability – verypractical ethical concerns hinge upon how we define the nature of disability. Indeed, thesedefinitional matters determine something much broader as well – the scope of our moralobligations.

Philosophical ethics and the moral significance of disability

Ethical issues related to disability fall into applied normative ethics whereby normative moraltheories and concepts are applied to ethical issues with practical significance. The mainbusiness of normative ethics is the general study of goodness and right action. The mainquestions of ethics are ‘what kind of beings should we be like?’ and ‘how are we to live?’.Philosophical ethics thus aims to describe the best features of human character and manner ina way that could be the basis for normative rules and even law-making and jurisdiction. Thepractical aim of normative ethics is to produce decision procedures or mental tools that canbe used to guide correct moral reasoning about matters of moral concern. The theoreticalaim of philosophical ethics, on the other hand, is coming to understand the underlyingnature of right and wrong actions, good and bad persons (Timmons 2002: 3–4). Furtherquestions concerning disability include the question in moral psychology, namely whetherdisability can be significant regarding one’s moral responsibility.

In addition to being an ontological concept, disability is also a normative concept thatreflects the ideas concerning what kinds of beings humans ought to be, both mentally andphysically. It is also related to ideas about how society and social arrangements ought to beconstructed in order to treat the members of society fairly. Despite our possibly differingviews about the causal origins of disability, having a ‘disability’ is often thought to imply anundesirable state of functioning or being of an individual – either to him or herself or toother people and society. Physical or mental abilities are essential constituents of humanity,not just because these abilities differentiate us from most non-human animals, but becausethey make possible the social and relational aspects of human life. The concept of disabilityreflects the idea that persons considered to be disabled lack certain abilities, or possibilities,that could contribute to their individual well-being or to their social adequacy. Abilities andpossibilities are considered good and useful, whereas disability is seen as an impedimentregarding human well-being. Thus, the essential core of the concept of disability is ethical.The tenets of the individual approaches to disability imply that disability is a matter of anindividual’s insufficient abilities. This inevitably places persons with impairments in anunfortunate and even tragic position. Supporters of the social or mere difference views ofdisability do not usually regard impairments as necessarily undesirable conditions. Disability,however, seems to be considered an undesirable state of functioning, or phenomenon, arisingprimarily or at least in part from unjust social arrangements. In other words, all individualisticand social approaches to disability contain a strong normative dimension that implies what isgood or bad for an individual and what is right or wrong as regards social arrangements(Vehmas 2004).

The crucial point, then, is to examine the relevance and soundness of the norms that causeus to define certain phenomena, conditions and ways of functioning as disabilities. There areroughly two kinds of considerations to examine the issue: instrumental and intrinsic. Instru-mental factors are those things that enhance human well-being and are the means through


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which to achieve things that are of intrinsic value. However, it is very difficult to judgewhether impairments enhance, hinder or are in any way relevant regarding the achievementof intrinsically valuable things. Consider, for example, profound intellectual disabilities, whichmost people see as tragic or at least as undesirable conditions. From an instrumental viewpoint,this common notion seems obvious because profound intellectual disabilities, which ofteninclude multiple disabilities, seem to prevent people from pursuing various meaningfulactivities. Jeff McMahan, among many others, has argued that ‘the more limited an indi-vidual’s capacities are, the more restricted his or her range of well-being will be’ (1996: 7)and, therefore, whereas us normal human beings can successfully pursue the variousdimensions of a good life, ‘the profoundly cognitively impaired are incapable, for example,of deep personal and social relations, creativity and achievement, the attainment of higherforms of knowledge, aesthetic pleasures, and so on’ (ibid.: 7–8).

McMahan’s statement raises empirical and evaluative concerns. Empirically, some ofMcMahan’s claims may be true; some of them are highly questionable or are without foun-dation. People with various forms of intellectual disability are indeed capable of forming deeppersonal and social relations, as well as having aesthetic pleasures. Eva Kittay, for example,describes her daughter Sesha, who was diagnosed as being severely to profoundly retarded, asan ‘enormously responsive’ person who, while listening to Beethoven’s Emperor Concerto athome, ‘gazes out the window enthralled, occasionally turning to us with a twinkle in her eyewhen she anticipates some really good parts’ (2005: 127). There is generally a differencein the narratives of philosophers who identify as having family members with profoundintellectual disabilities compared with those who have had little or no contact. It is hardlysurprising that people with intellectual disabilities, or people in general for that matter, tendto be more competent with people close to them than they are with people with whom theyinteract only occasionally (Vehmas 1999). Many philosophers, such as McMahan, givehopelessly biased and flawed descriptions of the lives of people with intellectual disabilitiesand their families. Selectivity in the use of empirical data and factual statements of a non-ethical sort gives a framework to the arguments and directs the conclusions. On the basis oftheir simplified conception of disability, these philosophers can present questions of moraljustification as less problematic. But wrong facts do not create merely false, but also poten-tially harmful, arguments that may reinforce prejudice and discrimination against people withimpairments (Kittay 2009; Vehmas 1999).

In evaluative terms, and assuming that the things McMahan mentions should actually beseen as constitutive of human well-being, his position raises an epistemic concern about theconditions of our judgements regarding the quality of people’s experiences. His claims seemto require some reliable standard that would help us to judge when, for instance, personaland social relations are deep, what kind of knowledge is of a higher form, or when aestheticpleasures are truly aesthetical. Now, we personally know academics who are keen to engagein abstract conversations but who are close to incompetent when dealing with emotionalissues involving their friends, spouses or children. We have also met many persons with var-ious levels of intellectual disability who are unable to analyse, say, Aristotle’s virtue ethics, butwho are very empathetic, kind and seem to thrive socially, as well as to have emotionallyintimate relations with people close to them. In other words, ability for mutual commu-nication of one’s feelings does not require an ability to appreciate abstract thought, and itseems clear that the former is more crucial for the quality (or deepness) of one’s personal andsocial relations than the latter. As for aesthetic pleasures, someone with classical training inmusic may not be convinced that ecstatic responses to rock music qualify as genuine aestheticpleasure. It is quite possible to maintain that the emotionally challenged but intellectually


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gifted academics, and people who are able to understand, say, the complexity of a Bach fugueand see presumably correctly rock music as a pointless racket, can pursue more successfullythe various dimensions of a good life. This kind of position would, however, exclude mostpeople from higher levels of well-being. Even so-called non-disabled people achieve forms ofwell-being in degrees that vary greatly. And even with an acknowledgement of impairmentand associated decrements in functioning, it is unclear that people with severe cognitiveimpairments possess any less intrinsic moral worth. While people with profound intellectualdisabilities may lack some of the cognitive functions that so-called normal human beingspossess, they are, nonetheless, persons in the morally significant sense (Vehmas and Curtis2017). Impairment is merely one factor among many others that may affect one’s chances topursue different dimensions of well-being and is not an overriding determining factor inmoral status.

Instrumentally, it is difficult to prove the role of impairment in people’s lives because onecan always, and quite plausibly as well, argue that the significance of impairments regardingwell-being depends mostly on social circumstances. Impairments are often a predicament, asTom Shakespeare (2006: 63–64) has argued, but so are many other things in human lives. Inmost cases it is probably correct to pinpoint the significant sources of one’s well-being at theintersection of various factors (personal, social, physical, cultural, etc.). For example, the sig-nificance of an inability to read and write due to intellectual disability, or an inability to formand maintain a relationship due to emotional issues, depends largely on social context and itsvalues. Still, some impairments seem to cause distress and downright suffering regardless ofthe environmental and social conditions. In particular, we have in mind some difficult formsof autism spectrum and psychiatric conditions that can, subjectively speaking, make the livesof people with these conditions, and people close to them, burdensome.

It would be foolish to deny the significant impacts that impairments often have on people’slives and well-being. For example, persons with intellectual disabilities have limitations inintellectual functioning and in adaptive behaviour. This is due to their impairments and therequirements of competence in the particular society (although the most severe forms ofintellectual disability would disable a person no matter what the social context) (Vehmas2010). But intellectual disabilities do not necessarily prevent one from faring well; peoplewith such disabilities indeed are capable of aesthetic pleasures, of forming deep relationships,and so on. Yet it is true that some persons with milder forms of intellectual disability dorealise their difference and various limitations, and suffer from it. But on the other hand,what else is new? It is the common fate of most of us humans to come to terms with ourinsecurities and feelings of inadequacy because there are always people who are more intel-ligent, attractive, virtuous, or what have you, than we perceive ourselves to be.

Most people who have had any contact with persons with intellectual disabilities wouldprobably admit that intellectual disabilities as such do not make one’s life miserable. Often itseems to be quite the opposite. And, indeed, well-being is essentially a subjective concept by itsvery nature; it unavoidably concerns ‘what is good or bad for the subject in question’ (Sumner1995: 767) regardless of whether one evaluates an individual’s good in the light of his or herexperiences, desires or some objective standards (for example, see Crisp 2008). Many philoso-phers would probably accept the empirical observation that environment and relationship withothers often count a great deal more than intellectual competence when assessing one’s sub-jective well-being (Vehmas 1999). But surely, we think, there must be something wrong withimpairments and particularly cognitive impairments as such, especially if they compromise one’ssubjective welfare. It seems highly counter-intuitive to view impairments as neutral, and not asharmful qualities.


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If this instrumental starting point seems insufficient we need to ask whether it is possible tostipulate intrinsic factors that would form an objective and a substantial foundation for thenormative examination of disability. However, the problem with intrinsic values is that, ulti-mately, they require either an essentialist account of humanity or an objective account thatundeniably explains why certain things are good and valuable in their own right. If we are tosay that some quality is of intrinsic value to human beings, in the essentialist framework weneed to point out how it is necessary in the fulfilment of the human ideal. Commonsensical, orMoorean dialectical justifications permit us to rightly regard people with intellectual disabilitiesas moral equals to able-bodied individuals without having to get into the messy business ofdefining personhood in a concrete manner (Curtis and Vehmas 2016). Aristotle’s theory is anexample of an openly species-specific account: all creatures have a nature and their existencehas an end that is based on their nature (Griffin 1986: 56–72). So, all we need to do in anAristotelian framework is to deduce from human nature our natural telos.

Another possibility in explaining the value of certain things in people’s lives is to see howthey correspond with things that are intrinsically valuable, that is, valuable in a way thatneeds no further explanation or justification. What could such things be? The most commonanswer is happiness. Traditionally, philosophers are not content with a purely subjectivistunderstanding of happiness. This is apparent and undeniable in cases where someone takespleasure from harming others. One could also argue that some ways of fulfilling one’s hap-piness are not actually in line with a good life. John Rawls has presented an example of amathematically gifted man whose only pleasure is to count blades of grass in various geo-metrically shaped areas such as park squares and well-trimmed lawns (1971: 432). To many ofus, this man’s happiness would seem peculiar – not the kind of happiness that would be ofintrinsic value. This is because subjective well-being and sense of happiness are often seen asrelevant only when they have resulted from living according to the ideals that form the ideaof a good life; in other words, you have to be happy for the right reasons. This view naturallyraises questions about the content of the good and its justification. There are various objec-tive accounts of morality and the good life but there is no consensus as to why we shouldadopt a particular theory as the ultimate criterion for a good human life. Also, it would becurious to detach goodness or badness altogether from a subjective perspective. Knowledge,rational activity, love and many other things may be valuable in their own right, but theywould also be pointless if they were entirely devoid of pleasure. Moral ideals that do notbenefit beings are, at the end of the day, useless. For instance, the badness of a pain consists inits being disliked; it is not disliked because it is bad. What is of value, or is good for someone,requires an individual’s desire for it (Parfit 1986: 499–502).

Another factor that can possibly be seen as having intrinsic value is opportunity. Accordingto John Harris (2000, 2001), disabilities are the kind of harmed conditions that someone has astrong rational preference not to be in. A harmed condition is relative both to one’s rationalpreferences and to possible alternatives. In other words, some condition is a disability if itimplies the deprivation of worthwhile experiences and the possibility of exploring them:‘The intellectually disabled do miss out on some dimensions of experience which are closedto them in the way that music is closed to the deaf. And this is a disability’ (ibid. 2001: 384).Thus, Harris conceptualises disability in terms of missed possibilities and opportunities.Disability is something to do with individuals’ abilities for pursuing various enrichingexperiences and possibilities in life.

Harris’s formulation gives the impression that as such opportunities are valuable and thatthe more opportunities one has to pursue worthwhile experiences, the better. But clearly thisis not true. Being spoilt for choice does not guarantee one’s happiness; rather, sometimes it


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may cause stress and constant feelings of inadequacy. For example, one might have littletalent in academic scholarship, music and sports, and still enjoy all these activities. But at thesame time, one’s lack of talent in these things can be attributed, at least partly, to a lack oftime to improve the talents in all three areas simultaneously. Hence, one might be better offconcentrating on improving one’s performance in only one of these areas. Harris’s accountalso raises the question of what kinds of possibilities are relevant in the sense that the lack ofthem amounts to a disability and harm. Harris thinks that hearing is an invaluable faculty andthat people are disabled if they cannot enjoy ‘Mozart, and Beethoven, and dance music, andthe sound of the wind in the trees, and the waves on the shore’ (2000: 97). This seemsintuitively clear to hearing people but it does not provide a satisfactory argument for thenotion that loss of hearing inevitably amounts to a disability – especially since many deafpeople do not consider themselves disabled or unfortunate (depending, of course, on whe-ther they were born deaf or impaired later in their lives). Harris does not seem to take intoaccount the fact that certain functions are regarded vital for human well-being because theyare ‘sources of shared experience and social interaction’ and also because ‘our social life andculture are built around some of those functions’ (Wasserman 1996: 133). This is why peopleusually do not feel impaired in lacking a sixth sense or the acoustic range or olfactory sensi-tivity of a typical dog. Thus, functions and faculties are regarded as good for people on thebasis of actual cultural and social accommodation and requirements, regardless of how muchthese, or some other functions and faculties, could enrich our lives in some other circum-stances (Vehmas 2004).

Despite its intuitive appeal to most people, it is very difficult to argue either on instrumentalor intrinsic grounds that impairments are necessarily harmful regarding human well-being. Butit would also be unconvincing to claim that impairments sometimes would not cause somekind of predicament or downright suffering to people. It is important to distinguish somethingbeing a disadvantage and something being disadvantageous on balance (Steinbock 2000: 112–3). Deafness, for example, is a disadvantage in the sense that it precludes the possibility ofembarking on many activities and careers but also leaves many other opportunities available.So, on balance, deafness may not amount to a disadvantage although the impairment in itselfmay be considered a disadvantage – something one might prefer not to have. All people faceundesirable limitations in their lives as embodied beings that on balance are not dis-advantageous. Ultimately, the significance of any characteristic to one’s well-being dependslargely on social values and arrangements.

Aside from articulating the scope of the moral community or the nature of the livedexperience of disability, the study of applied normative ethics can also tell us important thingsabout the morality of particular policies affecting people with disabilities. So-called appliedethics asks questions about the permissibility of things like selective abortion or assisted dying,among other issues, and allows us to make sense of critiques or endorsements emerging frompeople with disabilities and disability rights activists.

Questions concerning who ought to be permitted to come into existence, oftentimesfocusing on those arguments made by people like McMahan and Harris, reside within thisrealm of inquiry. Most powerfully, Peter Singer (1979), like McMahan, has argued thatfetuses and newborn infants lack the requisite characteristics for personhood and that termi-nating the life of a severely disabled newborn, because of the presence of a life deemed sodominated by suffering it is not worth living, is perfectly moral. More recently, and with theadvent of new technologies, questions concerning the selection of embryos for implantationhave also emerged. Julian Savulescu (2001), for example, suggests that because eugenicembryo selection is now available to many couples undergoing IVF and PGD, all prospective


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parents have a moral obligation to select the embryo, of all possible embryos, that is likely tolive the best possible life. This moral obligation, perhaps obviously according to Savulescu,rules out bringing a disabled child into existence when one could have selected a non-disabledembryo for implantation instead.

Policies such as these often get characterised as a form of new eugenics, and are therefore,understandably, linked to the devaluing of people with disabilities and their very existence(for example, see Saxton 2013).

At the other end of life, similarly interesting questions get raised concerning the experienceof disability and assisted dying, for example. Disability advocacy groups like Not Dead Yetinsist that ‘safeguards cannot be established to prevent abuses resulting in the wrongful deathof numerous disabled persons, old and young’. Indeed, the only true safeguard against abuse‘is that assisted suicide remain illegal and socially condemned for all citizens equally’ (Bick-enbach 1998: 125). Others highlight how a denial of end of life autonomy says damagingthings about people with disabilities and their rights and abilities to exercise choice over theirday-to-day lives (Sumner 2018; Riddle 2017b; Silvers 1998).

Questions such as these are inherently moral in nature, and, in short, moral questionsprovide some insight into the manner in which society ought to be regulated and governed.

Political philosophy and disability policy

Philosophical ethics aims to produce well-argued norms that could, first of all, contributeto people’s pursuit of a good life and, second, regulate social life. Ethics is thus closely linkedto political philosophy, which involves reflections on how best to arrange our collective lives.Political philosophy aims to answer the question: what would institutionally be the best wayto arrange our social life, and how can and should these arrangements be justified? Typically,political philosophers discuss the meaning and significance of, for instance, liberty, justice andequality, rather than merely what we owe to each other.

Largely regarded as being responsible for the reinvigorated philosophical interest in justice-related matters, John Rawls’ A Theory of Justice (1971) often serves as a starting point for thoseseeking to answer questions related to disability and the promotion of justice. However, Rawls’contractarianism has been criticised for excluding people who do not conform to the demandsof normality from the negotiating table and thus from the spheres of justice. Contractarianismconflates the negotiators of justice with the benefactors of justice, with the result that thenegotiators agree on arrangements that concern first and foremost themselves. Contractarianismhas been based on a one-sided view of humanity and has failed to recognise sufficiently thehuman diversity, and to ‘attend to the fact of human dependency and the consequences of thisdependency on social organization’ (Kittay 1999: 76). Thus, those who are highly dependenton other people’s care have been pushed to the fringes of humanity and the political system.Rawls excludes people with disabilities, as they are not ‘normal’ members of society, requiringor wanting ‘normal’ distributional principles. Importantly, Rawls’ attempt to promote justiceaffirms an able-bodied conception of normalcy. Whereas need or difference among non-disabled contractors is viewed as a desirable form of diversity, capable of enriching a conceptionof justice, the difference associated with disability is not normal, despite the fact that most of uswill become, at some point in our lives, disabled (Riddle 2017a).

Different egalitarians would take up Rawls’ contractarianism and attempt, in a moreexplicit manner, to advance a conception of justice more attuned to health and disability.Norman Daniels, for example, advances a Rawlsian framework in Just Health Care (1985) andJust Health (2008). He suggests that health and impairment are of special importance for


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justice-based considerations because adequate health and a life free from impairment arerequired for ‘normal functioning’, or to function within what he calls a ‘normal opportunityrange’. Far from Rawls’ postponement of disability, Daniels tackles it head on, but fails toaccount for the relationship between impairment and disability. In other words, whenattempting to address disability, theorists such as Daniels implicitly endorse a medicalisedconception of disability, and thus fail to promote justice for people with disabilities becausethe manner in which impairment manifests itself socially is largely ignored.

Ronald Dworkin (2000) attempts to advance a different kind of resource-based egalitarianismaltogether. He, not unlike Rawls, attempts to circumvent difficult questions of disability andhealth and views good health and freedom from impairment as resources (ibid.). For Dworkin(ibid.), people are asked how much insurance they would buy, from an initially equal stock ofresources, against the risk of being disabled. When factored together, the average level of cov-erage and a corresponding premium would form the basis of a system of redistribution to thedisabled. But what might it say about those living with impairments or facing disabling barriers ifwe view these and other states of being as things against which to insure ourselves? First, it tooseems to imply a medicalised understanding of disability. Second, we are led to view disability asa personal tragedy: ‘[p]eople with disabilities become pitiable because of the terrible bad luckthey have suffered’ (Riddle 2017a: 48).

Emerging from these and other critiques of resource and welfare-based conceptions of jus-tice, one of the most highly influential contemporary political theories that addresses theseconcerns is the capabilities approach, proposed first by Amartya Sen, and then substantiallydeveloped by Martha Nussbaum. Sen (1995) suggests that a focus on the possession of goods orresources is inadequate for a conception of justice. Instead, what mattered is what valuabledoings or beings people are capable of achieving (Riddle 2014). He wisely acknowledges that‘the conversion of goods to capabilities varies from person to person substantially, and theequality of the former may still be far from the equality of the latter’ (Sen 1995: 329). Perhapsobviously, some people with disabilities require additional resources, both socially as well aspersonally, in order to achieve equal levels of functioning or access to opportunity in society.

Nussbaum (2006) suggests that the primary focus of a conception of justice ought to be anindividual’s capability to function. The capabilities approach has two primary components.Briefly, a ‘functioning’ is a state or activity that people are free to secure. A ‘capability’ is a setof functionings that an individual has a choice over. Therefore, one’s capability set representshis or her freedom to choose alternative lives to lead.

While inclusive of things like ‘bodily health’, Nussbaum’s (2011) conception is resolutelypluralistic about value, suggesting that any minimal conception of justice must provide securecapabilities to function in things as broad as ‘senses, imagination, and thought’, ‘emotions’,and ‘control over one’s environment’. Taking greater note of the diversity of the humancondition, the capabilities approach seeks to provide substantive opportunities that individualsare free to secure. In addition to the resources endorsed by theorists such as Rawls andDaniels, the capabilities approach takes into account what Ingrid Robeyns calls personalconversion factors (2005: 99). In other words, in addition to the resources at one’s disposal,various skills, talents, abilities, or disabilities, could have an impact on an individual’s oppor-tunity to secure a functioning. It is only when adequate resources meet adequate conversionfactors that individuals can properly be said to possess a capability to function.

The capabilities approach is not without criticism, however. Nussbaum’s conception of thecapabilities approach, in particular, has received criticism for failing to articulate a mechanismto prioritise capabilities (Wolff and de-Shalit 2007) and for being unable to assess whether theminimum has been reached for any one capability (Riddle 2010).


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Others still suggest that despite Nussbaum’s emphasis on the importance of the promotionof dignity, ‘the capabilities approach stigmatises individuals in both the assessment of need,and provision of resources and accommodation, thus undermining an essential aspect of one’shuman dignity’ (Riddle 2013b: 270). More specifically, Thomas Pogge (2002) has sug-gested that the capabilities approach is not as sensitive to differing natural endowments asother conceptions of justice, because it is committed to making interpersonal comparisonsand comparing individuals to one another, and thus, view human inequality in vertical,rather than horizontal terms.

In an attempt to address these concerns and others, the capabilities approach has beenadopted and modified by many for a multitude of purposes. It might not be a stretch tosuggest that the capabilities approach has taken over from A Theory of Justice to become thenew starting point for all subsequent theorising about equality and justice.

Much as Daniels did for Rawls’ work, attention to addressing health specifically within thecapability paradigm has substantially advanced discussions concerning disability and justice. Thecapabilities approach has been reimagined or, perhaps to a lesser extent, developed further, tofeature health and the absence of disabling barriers or impairment more centrally. Health anddisability have been noted as being central, or prerequisites for the securing of other valuablefunctionings, and are thus of special importance for the pursuit of justice (Ruger 2010;Venkatapuram 2011; Riddle 2014).

Thus, the answers to Amartya Sen’s famous question, ‘the equality of what?’, arenumerous and varied. Nonetheless, philosophy serves as a foundation for the discussions ofjustice that take place in the law and government. Without having a clear conception ofjustice for the law to approximate, rules and regulations are bound to be at best wildlyimperfect. Philosophy does not take for granted that the promotion of equality is a simpletask. Instead, it aims to ask questions about the currency of egalitarian justice – about thenature of the things designed to promote an equal society – in an attempt to weed outlimitations of governmental structures and policies. It is one thing to say that a policy isdesigned to promote equality, yet it is another thing altogether to specify the type ofequality to be promoted.

Conclusion: the value of philosophy for disability

Philosophy’s primary task is to clarify, vis-à-vis a thorough dissection and examination, see-mingly simple concepts and principles. While it may sound contradictory to suggest thatclarity is found through the complicating of concepts whose meanings are often taken forgranted, philosophy generally works by making things worse before they get better.

We saw that the seemingly simple category of ‘disability’ or ‘people with disabilities’ isrevealed to contain complex ontological and political commitments depending upon thevarious understandings endorsed. Similarly, the scope of our moral community as well as thenature of our commitments to those to whom we have ethical obligations depends on dis-ability being conceptualised in an ontologically accurate manner, as well as our conception ofmorality being inclusive of the experience of disability itself. Finally, a failure to understand thenotion of equality or justice being endorsed before the law or within various acts of legislationcan permit terrible injustices to go unaddressed.

It is through the unravelling of complex notions that philosophy gains traction as a usefuland necessary tool to thoroughly explore the experience of disability, and furthermore howbest to promote an inclusive society that aims not solely, but largely, to benefit people withdisabilities.


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26

THE PSYCHOLOGYOF DISABILITY

Dan Goodley

Introduction

Disability studies theory and research have emerged in response to the politicisation ofdisabled people. Disability studies attends to the social, cultural, material, economic andmaterial conditions of exclusion. Often missing from these analyses is the psychology ofdisability. This exemption is understandable. Psychology has a troubling and troubled statusin disability studies. When disability and psychology cross they tend to do so in terms ofrehabilitation, treatment, therapy and cure. While there have been recent attempts toinfiltrate psychology with disability studies (Goodley and Lawthom 2005a, 2005b, 2005c)we should remain mindful that psychology has the power to recuperate its disciplinary potency;to individualise the material, political and cultural foci of disability studies. Disabled peopleremain under-represented on psychology courses (Olkin 2003), and, as indicated in theaccounts of Levinson and Parritt (2005) and Stannett (2005), disabled psychologists remainexcluded from the profession. Despite these problems, following Goodley (2010, 2016),merging disability studies and psychology might allow us to address a number of issues,including theorising the psychological impact of living with an impairment in a disablingsociety; exploring the ways in which disabled people psychologically deal with demandingpublics; and exposing non-disabled people’s unresolved, unconscious conflicts around theirown bodies and personhoods. While addressing these issues might well contribute to thedevelopment of disability studies, the idea of developing a psychology of disability raisestwo significant questions. Does a turn to psychology risk individualising the phenomenonof disability? What psychological orientations already exist that may enhance our relational,social, cultural and political understandings of disability? This chapter will address thesequestions by making a case against ‘a functionalist psychology of disability’ and developing,as an alternative, an argument for ‘a phenomenological psychology of disability’. I willargue that a psychology of disability, which positions psychology as a functionalist science,that develops as the discipline of the individual, treats individuals in ways that maintain thedisablist (and ableist) status quo. In contrast, a critical psychology of disability recasts psy-chology as phenomenological inquiry, develops psychology as a discipline of and for thecommunity, and seeks to treat the community in ways that challenge disabling conditionsof everyday life.

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A functionalist psychology of disability: mainstreampsychological disability studies

That disabled researcher who came to speak at your disability seminar – what’swrong with him? (A question asked of me by a professor of psychology, some-where in the UK.)

I was reading through my lecturer’s new textbook the other day – the‘Abnormal psychology’ text – and I thought, ‘do you know, I think I amdepressed, schizophrenic, autistic and many other things!’ (Anonymized com-ments of a third-year psychology undergraduate student.)

A university lecturer was teaching a second-year undergraduate class onresearch methods in psychology. During the first session she asked the class,‘How would you find out how your friend was feeling?’ After at least threeminutes of silence, a student cautiously raised her hand to answer, ‘I would sendher a questionnaire.’ The lecturer acknowledged that as a valid psychologicalmeasure. A short time later another member of the class raised her hand tosuggest, ‘Could you just … eh, ring and ask how she was feeling?’

(An anecdote shared by an academic colleague, Goodley 2010: xx)

This being a chapter on psychology, I will start with a personal confession: I am a recoveringpsychologist. I feel an acute sense of trepidation in admitting this. Perhaps I should feel lessconcerned when disability studies luminaries such as Vic Finkelstein are themselves psychol-ogists by background and training (Finkelstein and French 1993). The uncomfortable truth,that I do not want to avoid in this chapter, is that psychology has led a troubled existence inthe disability studies world. The anecdotes presented above – picked out of the academiccontext of psychology – hint at some of the problems inherent in psychological science,theory and research. Implicit within these anecdotes are assumptions of lack, deficit andpathology associated with disability: a phenomenon that encompasses physical and sensoryimpairments as well as ‘impairments of mind’ such as intellectual disabilities and mental healthdiagnoses. We can also detect a mode of research production and level of analysis thatdominates psychology: the scientific study of an individual’s mind and behaviour. In this sec-tion, then, I want to worry away at my own feelings towards psychology and to address thefirst question posed at the outset of the chapter: does a turn to psychology risk individualisingthe phenomenon of disability? I will argue that there are real problems inherent with anapproach to psychology that threatens to understand disability as a product of a deficient,flawed, lacking individual.

Psychology is a broad discipline that encompasses many different theoretical positionsincluding humanism, cognitivism, behaviourism, psychoanalysis, existentialism and biological.There are a number of professional psychological roles including educational, clinical, coun-selling, health, psychotherapeutic, psychology, forensic and occupational. In recent yearspsychology has been territorialised by a number of politicised and transformative positionsincluding feminist, postcolonial, queer, class and disability theories (see Goodley 2016).Nonetheless, a positivist and experimentalist approach to the study of psychology continuesto dominate the field, especially in those arenas where psychology seeks scientific status andauthority. A consequence of this dominance is a tacit and sometimes unthinking reliance onscientific method. While I am not suggesting that science is inherently problematic for dis-abled people, a scientific approach to the study of psychology has the potential to lead, at thevery least, to a narrow conception of disability as a cultural, social and economic phenom-enon. This is particularly so when we consider that for many psychologists the unit of analysis

The psychology of disability

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is the individual. Scientific analyses of the individual will, inevitably, lead to individualisticunderstandings of psychological and social phenomena. To develop this observation further,let us turn to a study.

Study 1: abstract

As a consequence of a severe reduction in their autonomy, the social life ofpeople with quadriplegia becomes highly routine. In addition, the social envir-onment becomes very limited because people without disabilities may feelawkward around, or have an aversion to, people with quadriplegia. A petanimal often facilitates social interactions between humans, and in this study weinvestigated the influence of a capuchin monkey companion on the socialenvironment of a person with quadriplegia. In three different public areas, wecompared the behaviors of passers-by confronted with a person with quad-riplegia or a person who had no disabilities, either alone or with a capuchincompanion. In both situations the capuchin companion greatly modified thebehaviors of the passers-by, inducing more positive social behaviors such assmiles, and higher frequencies of visual contact. In addition, passers-by tended toavoid the person with quadriplegia less often when the capuchin was present.The presence of a capuchin companion potentially improves the social envir-onment of people with quadriplegia.

(Hien and Deputte 1997: 101)

By citing this study, I am in no way suggesting that it is representative of psychological stu-dies of disability. I would accept that it is a mischievous choice and an easy target. What I dothink that this study captures, though, are some of the ways in which a positivistic andindividualistic approach to the study of psychological processes – such as social isolation,autonomy and the response of (non-disabled) others – may reinforce particular conceptionsof disability and impairment. This study is emblematic of a particular kind of psychology.Using this case study as a point of reflection, we will consider some of the ways in which a‘psychology of disability’ draws on a distinct psychological orientation which is at odds withthe aims and ambitions of disability studies.

Our first consideration is psychology as a functionalist science. Too often what counts as ‘goodpsychology’ is framed in terms of a scientific approach to research. C. Wright Mills (1970:61–65) defined this approach as ‘abstracted empiricism’; a pronounced tendency to studyphenomena only within the curiously self-imposed limitations of an arbitrary epistemology.The epistemology Wright Mills was describing relates to a form of positivistic empiricalpsychology in which the individual subject is manipulated, controlled and measured in orderto understand something objectively valid and reliable within that individual. This is themode of research associated with experimentation and one that is strongly advocated bypsychologists who view their discipline as a science akin to the natural sciences. Hien andDeputte’s (1997) study elegantly captures this approach to abstracted empiricism, wherebythe disabled subject is reduced to a passive object of experimental investigation. A number ofconditions of the experiment are manipulated (a person with quadriplegia or a person whohad no disabilities, either alone or with a capuchin companion), replicable measures are taken(positive social behaviours such as smiles, and higher frequencies of visual contact on the partof passers-by) in order to address hypotheses (whether or not the presence of a capuchincompanion potentially improves the social environment of people with quadriplegia).Disabled individuals emerge as variables of the experiment and objects of inquiry. Leaving


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aside, for now, the problems disabled people might have with being objectified by thisresearch, the study does at least take seriously their social location and seeks to address theproblem of isolation. However, inherent within this study is a view not simply of disabledpeople but, more generally, of the individual.

This leads neatly to our second consideration: psychology as the discipline of the individual.

Psychology is an academic discipline that is interested in the thoughts (cognitions), emotions(affect) and behaviours (responses) of individuals. A psychology of disability would, therefore,translate into a psychology of disabled individuals. When individualism and functionalist sci-ence fold into one another then there is always the potential for developing scientific theoriesabout the relative functionality of disabled individuals. Hien and Deputte’s (1997) study ispredicated on the assumption that individuals with quadriplegia lack autonomy whichdirectly impinges on their functionality in community settings. As Prilleltensky observes, acommonly held view about social justice held within psychology is the concept that psy-chologists can improve societies by helping one individual at a time (2001: 750). Hence,Hein and Deputte’s (1997) study is clearly underpinned by a human aim – to improve theaffective and social environments of wheelchair users – but is ultimately focused on theindividual. The danger inherent in this perspective is that the problem of disability is seen aslying with the disabled individual rather than with a social world that responds negatively todisabled individuals. The notion of discipline extends beyond university walls. As MichelFoucault (1973a, 1973b, 1977, 1978) recognised, the ‘individual’ has a long sociopoliticalhistory and etymology. It is tied to the Enlightenment rise of the reasoned individual and his/

her democracy, over the sovereignty of church and monarchy. The ‘individual’ is also thecreation of capitalism, a convenient signifier of an alienating symbolic order, which masks theinequities of social and political life. And individuals populate consumerist and marketisedforms of education, work and leisure. Those able to benefit from this meritocracy flourishwhile the less able tend to flounder. In dominant ideas of everyday life, the ‘individual’remains the key site of understanding for the aetiology of disablism. As Spivak coins it,‘individualism in an age of imperialism relates to the making of human beings – the con-stitution and interpellation of the subject not only as an individual but as individualist’ (1985:344). Psychology’s individualistic functionalism has contributed markedly to the developmentof social policies, and legislative and educational systems that seek to discipline the individual:

The individual becomes the hub around which is organised the maintenance of dis-cipline, citizenship, rights and responsibilities demanded of democratic governmentsand its institutions of school, prison, welfare institution and workplace. Discourses ofthese institutions and their professionals served the disciplining of the individual.Human and social sciences informed their knowledge about the individual. But thesesciences did not simply provide understandings of the individual: they made theindividual in their own image.

(Goodley 2010: 56)

Questions are raised about the type of (disabled) individual that emerges through the dis-cipline and disciplining of psychology. This individual is incommensurate with disabilitystudies theories that aim to promote understandings of the disabled world while recognisingthe resistance of disabled people.

The third consideration, psychology’s treatment of the individual, addresses the problems ofdisability at the level of individual people. This approach dominates the professional andservice experiences of disabled people who are subjected to a number of interventions from


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professionals allied to medicine (Finkelstein 1999a, 1999b). Psychology tends to defer refer-ence to material and social structural influences on personhood by subordinating theseinfluences to cognitive processes, following the dictum that ‘problems follow from people’sperceptions and evaluations of the events in their lives rather than from the events them-selves’ (Cromby and Harper 2009: 342). Hence, Hien and Deputte’s (1997) study arrives atsome tentative conclusions about the responses of non-disabled passers-by to a disabledperson (with or without a capuchin monkey present). While these findings might be helpfulin describing response sets, the actual material and social origins of these responses remainunchallenged. Indeed, Hein and Deputte’s reasoning about the origins of isolation implicatesonly disabled people; their isolation is the consequence of their ‘severe reduction of auton-omy’ (ibid.: 101). Unsurprisingly, then, their preferred intervention is a therapeutic one –

focused on improving the life of the individual through the introduction of a monkey. Whilewe might laugh at this intervention, perhaps, what would we make of a therapeutic andpharmacological treatment? Drugs might sound more scientific than a monkey but bothinterventions leave the social world intact. While a few passers-by are encouraged to engagewith the monkey (and perhaps with the disabled person), the community remains relativelyuntroubled. Following Wright Mills (1970: 14–16), social isolation is tackled only as a ‘pri-vate trouble’ of individuals that occurs in their relationships with others (often when our ownvalues are threatened) and does not become understood or engaged with as a ‘public issue’ oforganisations and institutions (that often arise as a crisis of institutional arrangements). Thereare real dilemmas in keeping disability a private matter because this will influence moregeneral societal responses to disability:

What shall we do now you are disabled?We shall cure you.How shall you live when our cure fails and you are now permanently disabled?You shall adjust.

(Michalko 2002: 30)

For social change to occur, Wright Mills advocates that research must concern itself with privatetroubles and public issues; a point that Michalko also makes clear (as we shall see below).

Our fourth consideration, psychology as handmaiden of society, follows the suggestion madeby a number of critical commentators that psychology has historically helped to maintain thestatus quo (Kitzinger 1993; Shield 1992). Venn (1984) argues that psychology contributes, inno small part, to a particular view of the individual of contemporary society, namely theunitary rational subject or the sovereign self of modern individualism. Psychology is not justthe science of the individual but, crucially, a discourse that participates positively in theconstruction of the social world and the instrumental rationality of the individual (ibid.: 122).Psychology is a science that speaks of the individual. Psychology has long held implicitassumptions (that are then made explicit) about the individual and, conversely, what is requiredto be an individual. Following Goodley (2016), the accepted individual of contemporarysociety, whom many of us are expected to mirror, is adult, male, middle class, white, het-erosexual, rule abiding, sane, able-bodied and -minded, and European. The converse – theOther – is the unacceptable: child, female, working class, black, homosexual, criminal,insane, disabled and resolutely non-European. Venn suggests that in order to promote thedesired individual an obsessional focus on the abject Other is required; normalising and dis-ciplining this section of the population is part of the quest for the model citizen and rationalself. The individual of post-industrial societies is a ‘normal’ one who will contribute to the


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making of society as a body-of-functions (Michalko 2002: 156). This individual is, preferably,able-bodied and -minded, autonomous and self-sustaining (Campbell 2009). A key site of theoppression of disabled people pertains to those moments when they are judged to fail to matchup to the ideal individual; when they are categorised as embodying the failing individual. Mintzsuggests that social discourses about disability are not about disability at all (2002: 162). Rather,they relate to the need to guarantee the privileged status of the non-disabled individual; ‘a needthat, in turn, emerges from fears about the fragility and unpredictability of embodied identities’.Similarly, Marks (1999a) observes that disabled people constitute a huge problem for non-disabled society precisely because they disrupt the normative individual:

The person that dribbles, she comments, disrupts a culture that emphasises bodilycontrol and associated cultural norms around manners, convention and bodilycomportment. An individual whose speech is difficult to understand is assumed tohave a problem because they challenge a colonising stance of certainty about howpeople should speak. People who do not walk are understood as tragic because theydo not embody the idealised mobility of the autonomous walker (Oliver, 1993).People with learning difficulties, who fail to meet developmentalist stages, are discardedfrom mainstream educational systems because of their lack of fit with educational pre-rogatives. Individuals who depend on – or require connections with – others to live arenot individuals at all.

(Goodley 2010: 79)

Disabled people are their impairment. They are broken individuals. They lack development.They cannot do. They are burdens. They do not have the ability to lead an independent life. Inassigning the problems of disability to the bodies and personhood of disabled people psychol-ogy leaves the social world untouched, under-theorised and unchallenged. And one way inwhich we might describe this social world is that it is drenched in the ideology of ableism

(Campbell 2009; Goodley 2014); a cultural imaginary and social order centred around theidealised able-bodied and -minded citizen who is self-sufficient, self-governing and autono-mous. This vision of the citizen (and I keep the ocularcentric term here for a reason that willbecome apparent below) undergirds dominant policy formations, educational goals and cultu-rally valued forms of personhood. And this narrow ableist view is one that too often circulatesthrough mainstream psychological theories and practices.

A phenomenological psychology of disability:critical psychological disability studies

We now turn to our second question: what psychological orientations already exist that mayenhance our relational, social, cultural and political understandings of disability? In answeringthis question, I want to consider the contribution of a phenomenology: a perspective that hasgathered force in a movement defined as ‘critical psychology’. Goodley offers the followingoverview:

Critical psychologists contest the modernist view that psychology is a progressivescience. For Fox and Prilleltensky (1997), psychology has hindered social justice, tothe detriment of all communities and to oppressed groups in particular. Criticalpsychologists confront psychological practices that sustain oppression and seek,instead, to promote an ethical and politicised psychology that works alongside


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activists, users and survivors of psychology. The 1970s ‘crisis in social psychology’saw a paradigm shift in thinking about how psychology should go about its business.For Parker (1989), a key site of contestation appeared through interpretivists, phe-nomenologists, feminists and Marxists, writers who challenged the dominatingforces of positivism. The ‘crisis’ marked a sustained rejection of psychological func-tionalism: a mistaken view of isolated beings in socio-political vacuums: the roots ofpsychologisation. Overall, the crisis pushed psychologists towards meaning-orientedpersuasions often with political affiliations … Critical psychology shares much withdisability studies. Each are reactions to hegemonic constructions of elitist subjectivities,the medicalisation of distress and the segregation of some from the mainstream. Eachoppose the diagnosis, assessment and treatment of isolated individuals and seek tochange cultural and environmental forms of alienation and marginalisation. Similarly,each has produced epistemologies that invite criticality on the part of activists, theoristsand practitioners. They share a commitment to forming communities of practice thatare engaged with social change. Critical psychologists have deconstructed andreconstructed, revised and rejected psychology.

(2010: 87)

Some of the literature on disability studies has unambiguously drawn on what have beentermed ‘critical psychology’ resources, for example in education and childhood (Billington2000, 2002), in relation to reappraising the psychologist’s role (Olkin 2001, 2002, 2003,2008, 2009; Olkin and Pledger 2003; Levinson and Parritt 2005) and in ontological accountsof disablism (Chinn 2006; Reeve 2008). Analyses of critical disability studies have been madein reference to psychoanalysis (Marks 1999a, 1999b; Goodley 2011; Watermeyer 2013),humanistic (Swain and French 2000; Swain et al. 2003), post-structuralist (Todd 2005) anddiscursive psychology (Rapley 2004). All of these contributions contest the individualisationof disability but aim to expose some of the psychological elements of living with an impairmentin a disabling world. In this chapter, I want to turn to the contribution of phenomenology to acritical psychology of disability.

Study 2

When Rod Michalko’s sight finally became so limited that he no longer felt safeon busy city streets or traveling alone, he began a search for a guide. The Two-in-One is his account of how his search ended with Smokie, a guide dog, and adramatically different sense of blindness. Few people who regularly encounteredMichalko in his neighborhood shops and cafes realized that he was technicallyblind; like many people with physical disabilities, he had found ways of com-pensating for his impairment. Those who knew about his condition thought ofhim as a fully realized person who just happened to be blind. He thought sohimself. Until Smokie changed all that. In this often moving, always compellingmeditation on his relationship with Smokie, Michalko probes into what itmeans to be at home with blindness. Smokie makes no judgment aboutMichalko’s lack of sight; it simply is the condition within which they worktogether. Their partnership thus allows Michalko to step outside of the con-ventional – and even ‘enlightened’ – understanding of blindness; he becomesnot simply resigned to it but able to embrace it as an essential part of his beingin the world. Drawing on his training as a sociologist and his experience as adisabled person, Michalko joins a still small circle of scholars who examine


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disability from the inside. More rare still – and what will resonate with mostreaders – is Michalko’s remarkable portrayal of Smokie; avoiding sentimentalityand pathos, it is a deeply affectionate yet restrained and nuanced appreciation ofhis behavior and personality. From their first meeting at the dog guide trainingschool, Smokie springs to life in these pages as a highly competent, sure-footed,take-charge, full-speed-ahead, indispensable partner. ‘Sighties’ are always in awewatching them work; Michalko has even persuaded some of them that the Smo-kester can locate street addresses – but has a little difficulty with odd numbers!Readers of The Two-in-One can easily imagine Rod and Smokie sharing the jokeas they continue on their way.

(Michalko 1999)

As with the first case study of this chapter, we should not view this study as a perfect exampleof a critical psychological approach to the study of disability. Indeed, Michalko (1999)describes his own work in terms of sociological critique. However, Michalko’s work directlyextends into psychology through his use of phenomenology. This approach to the study ofpsychology places the dilemmas and possibilities of disability at the level of embodiment(Hughes and Paterson 1997, 2000; Hughes 2002; Michalko 2002; Titchkosky 2003; Over-boe 2007). Following Goodley (2010: 46), phenomenologists regard the capacity of the bodyto be a source of self and society. This has been termed a carnal sociology, drawing on thework of such people as Merleau-Ponty (1962), to theorise the body as the place where selfand society interact. Embodiment refers to how the body operates in the world at theintersections of the corporeal and institutional (Sherry 2006). Comportment, for example,reflects conventions. Ability is a response to environmental demands. Illness is a narrativewritten onto and lived with through recourse to a whole host of powerful narratives such asmedicine and self-help. The phenomenology of the everyday (Turner 2008: 12) engageswith the ‘leben’: the living, feeling and sensing facets of bodily experience (Crossley 1995).Bodies are sites for subjectivity and consciousness, our active vehicles for being in the world.Practical engagements with our surroundings inform the intentionality of the body. Sensesprovide thickness of meaning that then constitute the world around us. We open ourselvesand our bodies to the world and, in so doing so, influence the make-up, structure andformation of our environments (Merleau-Ponty 1962). Overboe (2007), for example,argues that the disabled self can be embraced as a unique embodied entity through whichto revise how bodies should and could be lived in. While there is this potential, criticsaccuse phenomenology of being nothing more than an individualistic account of embodi-ment, from the point of individual bodies, lacking a sociological and historical context(Turner 2008: 52). I disagree with this misrepresentation. Phenomenology permits us tointerrogate the interrelationships of psyches, bodies and the social world.

Michalko’s (1999) book, similarly to the work of Hien and Deputte (1997), considers therelational interface between humans and animals. The similarities stop there, though, asMichalko approaches the study of disability (and human-animal relationships for that matter)from a very different angle.

First, let us consider psychology as phenomenological inquiry. Michalko’s work is the antithesisof scientific, objective, quantifiable, experimental study. His work is an interpretivist inquirythat makes use of the creation, elaboration and power of stories that people bring to research(Haydon 2008). Michalko (1999) reflects upon the intimate, sustained and in-depth experi-ence of walking through blindness with a guide dog. Unlike Hien and Deputte’s (1997)work, which isolates human and animal as distinct variables requiring analysis, Michalko’s(1999) book offers some deeply personal, qualitative reflections on the blurring of embodied


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realities between himself and his guide dog, Smokie. This account stands in stark contra-distinction to functionalist science. And, crucially, his work resonates with recent posthumandisability studies scholarship that has emphasised the ways in which contemporary forms ofhumanity are increasingly intertwined with complex relationships with other humans, non-humans, animals and machines (Braidotti 2018; Goodley et al. 2014; Goodley et al. 2018).Significantly, Michalko (1999) is not simply a variable of a study: he is the active researcher ofhis relationship between human and animal and their shared encounters with the social world.For example, he argues that

Being ‘at home with blindness’ is to be an anomaly in the sighted world, andthinking of oneself as an anomaly does little for a blind person’s quest for integrityand dignity … Anomalies, to this way of thinking, are accidental: things shouldhave been otherwise. But for disease or accident, blind persons should and would beable to see. When we see blindness in this way we see it as a home unworthy ofhabitation. This leaves the blind person with only one choice – to be at home withblindness and not in blindness … This was how I understood my blindness before Ihad Smokie – as a condition that I had to overcome – and I believed that Smokiewould help me do so. But my understanding soon began to change.

(Ibid.: 101–102)

Michalko’s inquiry draws on emergent reflections of everyday life in order to expose his ownvalues regarding disability while illuminating societal and cultural values that already existabout disability. This being-in-the-world is a phenomenological position that may well givevery different understandings of disability to those that already exist in the community. Atthe very least, this approach foregrounds the perspectives of disabled researchers as theygrapple with the complexities of meanings, relationships and interactions of the everyday.Phenomenological inquiry assumes that one has a life to recount, presents (disabled) infor-mants as moral agents and situates the locus of culture in the interactions of self and others(McRuer and Wilkerson 2003: 11). This is a form of inquiry intrigued with what many of uswould understand psychologists to be interested in: a sense of self; the distinction of self fromanother; reflections on the body and explorations of cognition, affect and action. However,unlike the functionalist science described above, phenomenology qualitatively and herme-neutically interrogates an individual’s being-in-the-community.

Second, we can resituate psychology as a discipline of and for the community. Edwards (2002)argues that for communities to change this has to be accompanied by phenomenologicalchange. Michalko supports this argument when he writes that

Smokie and I move through our world alone together; focusing on one another in themidst of the plurality of our world and its many blindnesses. Smokie keeps mecompany in this estranged familiarity of opinion. I experience my blindness togetherwith Smokie in this plurality. My focus is on Smokie and on myself. The world wegenerate springs from our communication in the midst of the world and from ourmovements through it. (italics in the original)

(1999: 186, emphasis added)

One way in which Michalko’s (1999) study throws the spotlight onto the community isevidenced in his representation and explanation of many awkward (and at times exclusionary)comments and reactions that he (and Smokie) receive during their everyday encounters.


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These include a stranger placing a one dollar coin in Michalko’s hand while he waits withSmokie for a friend outside a coffee bar; strangers asking if Smokie is a ‘blind dog’ (‘Jeez: Ihope not’ is Michalko’s retort) and the difficulties in negotiating the terrain of sidewalkswhen Saturday shoppers have pulled up onto the kerbs to park their cars. These mundaneeveryday experiences draw attention to the ways in which the embodied and physical natureof the community can be likened to the ‘demanding public’ described by Hochschild (1983).Following Williams (2003) and Goodley (2010: 127), disabled people are expected to emo-tionally labour in response to demanding publics. Emotions are corporeal thoughts, embodiedprocesses, imbricated with social values and frequently involved in preserving social bonds,social rules and displays of behaviour (Williams 2003: 519–520). Our analysis of disabilitymoves away from an analysis of individual deficit to problems inherent within demandingcommunities that expect particular responses from disabled people. This approach resonateswith Finkelstein’s (1999a, 1999b) vision of the professional allied to the community, a conceptthat we will return to in the conclusion.

Third, we may revise psychology’s treatment of the community. A critical psychology of disability hasmuch to say about the constitution and functioning of society. Community psychologists pitchtheir analysis of psychology in the community as the place in which to address issues of socialchange and well-being. This is an orientation that fits neatly with the focus of disability studies onsocietal exclusion and disabling public discourses that are to be found in communities. Hence,following Oliver (1996), while people have impairments (cognitively, sensorially or physically)they also experience disability (marginalisation in a society that is not designed to meet the needsof people with impairments). While bodies may function in different ways – some lacking, somemore productive – we live in a culture of disablism: ‘a form of social oppression involving thesocial imposition of restrictions of activity on people with impairments and the socially engen-dered undermining of their psycho-emotional well-being’ (Thomas 2007: 73).

For Michalko (1999: 174), while he lives with blindness (that which is normally understoodas the biological reality of visual impairment) he also lives in blindness (public discourses andsocietal responses to blindness). Our task, then, is to address and challenge many taken forgranted assumptions that exist in the sighted world. Such a change of tack fits with Dorwickand Keys’s orientation of community psychology (2001: 5), which moves inquiry from anemphasis on an individual’s deficits to an emphasis on their rights (concerned with access andbarriers to access) and ultimately to an emphasis on empowerment (concerned with bothneeds and rights and with individuals’ choice and control of their own lives). Communitypsychologists face issues similar to those faced by disability studies researchers regardinginvolvement by participants, the importance of context, the tension between scientific scepticismand social action, and the impact of the researcher on the research process.

In the future, we hope that there will be more collaboration between the field ofdisability studies and community psychology. Such collaboration will expose disabilitystudies scholars to valuable theory and research concerning community phenomenaand give community psychologists a deeper understanding of the experience ofdisability.

(Ibid.: 12)

While these hopes seem very laudable, perhaps we could already claim that disability stu-dies – such as that adopted by Michalko (1999) – is already sensitising us to the communityand phenomenological experiences of disability. Disability studies pre-empts many of theparadigmatic changes demanded by community psychologists:


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While clinical psychology defined problems in terms of individuals, community psy-chology adopted ecological metaphors that encompassed various levels of analyses.While traditional applied psychology concentrated on professional help, communitypsychology fostered self-help and mutual help organizations taking place in naturalsettings. While clinicians operated very much as experts, community psychologists sawthemselves as collaborators. The latter wanted to build on the strengths of individualsand groups, and not just concern themselves with diagnosis of pathologies.

(Prilleltensky 2001: 749)

A community psychological engagement therefore engages with disability at the levels ofprivate troubles and public issues (Wright Mills 1970). Disability studies and communitypsychology merge together through the private/public, self/community and intimate/formalengagement of phenomenological inquiry:

Compassion at the interpersonal level is both wonderful and insufficient. There is adefinite need to expand the implementation of values from the group and neigh-borhood contexts to the political context … Efforts should always be directedtoward the long-term goal of making society more humane for everyone.

(Prilleltensky 2001: 758)

Fourth, we can promote psychology as a critic of society. When disability studies scholars onlyrecognise functionalist scientific approaches to psychology, then they forget some of psychol-ogy’s more radical histories. For example, the Frankfurt School of the early to mid-twentiethcentury included scholars such as Adorno, Marcuse, Horkheimer, Habermas, Fromm and Reichwho shared critical and revolutionary ambitions (see Frosh 1987). Following Goodley,

these scholars aspired to question the ‘nature’ of human essence; unpick ideology asa form of false consciousness; challenge practices of excessive repression that servedthe aims of capitalism (for example, in relation to the arts, creativity or sexuality);explored the contradictory maxims of Marx (‘life determines consciousness’) andFreud (‘anatomy is destiny’); struggled with the conflict between individual desire/creativity and social prohibition/management; recovered bodily pleasures (inc:original sensuous child-like polymorphous perversity of our bodies) from the nor-malising pressures of labour; celebrated alternative forms of institutional and relationalarrangement (matriarchal rather than patriarchal society). All writers shared the aim ofsynthesising the sociology of Marx and the psychology of Freud in the name ofradical social theory (Giroux 2009). Parker (2007: 116–117) describes the criticaltheory of the Frankfurt school, and other radical humanists, as opposing positivistneutrality; a shift from crude economics to consciousness; a view of individualism asdestructive and a shared ambition to recover human potential from the oppressive anddialectical markings of capitalist life.

(2010: 57)

Giroux’s (2009) account of the Frankfurt School captures the shared ambitions of this groupof writers to rescue reason from technocratic rationality and positivism. Naïve positivisminforms capitalist ideologies through the fetishisation of facts and the sidelining of subjectivity.In contrast, the radical humanism of the Frankfurt School views theory as ever present, anddialectical, with the potential to inform emancipatory practice and to subvert ideology.


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Dialectical theory reveals incompleteness where completeness is claimed and views culture asbeing colonised by ruling ideas and hegemonic practices. A critical community psychologyof disability seeks to recognise and build further on these revolutionary psychological tendencies.Michalko’s (1999) book has many revolutionary lessons for disability studies and psychologists.One of these relates to his demand to think again about pathological concepts of blindness and,instead, conceive it as a space of productive reflection and insight of one’s own psychology andits place in the world:

Smokie has reminded me, too, of the value of intimacy … Without intimacy,relations between nature and society become a mere matter of dominance andsubmission in which ‘society’ dominates and ‘nature’ submits. Intimacy allows therelationship between dominance and submission to be reciprocal, fluid and dialectical.This is what life with Smokie has taught me. With his guidance, I have becomeintimate with him, with my world, and with my blindness.

(Ibid.: 188)

Table 26.1 Professionals allied to professionals – or – to the community

Professionals allied to professionals Professionals allied to the community

Individual, moral and medical models Social, minority, cultural and relational models

Rehabilitation Community regeneration

Disabled people are service users Disabled people are expert citizens

Impairment Intersections

Individual adjustment and repair Systemic change and community cohesion

Attitudinal change Ideological and structural change

Care and cure Support and hope

Individual Relational

Human beings Cyborg and hybridised becomings

Participation Emancipation

Health Well-being

Advocacy Politicisation

Expertise Collective empowerment

Deficit-model Capacity-thinking

Service centred Community centred

Alliances with other professionals and services Alliance with organisations of disabled people

Services culture Community culture

Walthamstow Employment and Nursing Agency Local

Segregation Inclusion

Rights, in/dependence and mastery Rights, interdependence and vulnerability

Diagnosis Recognition

Marketisation Democratisation

Paid employment Cultural and community contribution

Source: adapted from Goodley (2016: 38) drawing on Dunst (2008); Rioux (1994); Finkelstein and Stuart(1996); Finkelstein (1999a, 1999b); Oliver (1996); Garland-Thomson (2002); Kagan (2002); Kagan andBurton (2002).


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Conclusion

In this chapter, we have explored two distinct psychologies of disability. We have consideredthe ways in which a functionalist psychology maintains an individualistic conception of dis-ability, while a phenomenological psychology opens up possibilities for addressing disablism inthe social relationships and interactions of the community. These are not just debates abouttheory. Psychology produces practitioners. We might ask how these two psychologies couldplay out in practice. Finkelstein’s (1999a, 1999b) concept of the professional allied to medicineand the professional allied to the community provides a useful framework for pitching our twopsychologies (see Table 26.1).

While beyond the scope of this chapter, these distinct models of professional philosophyand practice clearly play out very different ways in which psychology could or should inter-vene in the world on behalf of disabled people. Psychology continues to occupy a strongposition in service provision and professional practice in the lives of disabled people. It istherefore crucial that disability studies engages with psychology in ways that enhance thecommunity’s recognition of disabled people and their allies. One way of starting this processof re-engagement is to pull out the epistemological foundations, ontological assumptions andpotential modes of response that follow from distinct psychologies of disability. In the finalanalysis, one would hope that a psychology of disability fits well with the wider political,social, cultural and emancipatory ambitions of disability studies.

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27

CHALLENGING THEIMPAIRMENT/DISABILITY

DIVIDE

Disability history and the social model of disability

Michael Rembis

Almost everyone agrees that the British social model, sometimes called the ‘strong’ socialmodel, represents a fundamental and far-reaching transformation in the way societies thinkabout disability (Shakespeare 2014). Arguing that disability was separate from impairment andthat disability was socially created meant that it could be reduced or eliminated by makingthe built environment more accessible to people living with impairments and by passinglegislation that would help to protect disabled people’s rights. Social model thinking has beenadopted by various governments throughout the world (e.g. the Americans with DisabilitiesAct) and can be seen in the United Nations Convention on the Rights of Persons withDisabilities (CRPD) and the World Health Organization’s International Classification ofFunctioning, Disability and Health (ICF). Yet, as Tom Shakespeare has argued, ‘the strengthand simplicity of the strong social model of disability has created as many problems as it hassolved’ (2014: 14).

For almost 30 years, disability studies scholars have been working to complicate the Britishsocial model of disability (Shakespeare 2014). Writing in different contexts and from varioustheoretical perspectives, activists and scholars have shown the limits of the social model.Disability studies scholars working in the global south have argued, for example, that thesocial model does not fit easily, or in some cases at all, with the histories, cultures andsocieties they study (e.g. Grech 2017). On a more fundamental level, scholars and activistshave challenged the basic premise of the social model, the impairment/disability distinction,arguing that it is a false one. As Shakespeare has noted, ‘impairment and disability cannot beeasily extracted … the social and the biological are always entwined’ (2014: 22). A secondbut related challenge focuses on the central contention of the social model, which is thatsomething approaching equity or social justice can be achieved through the creation of abarrier-free world. Critics have argued that a barrier-free world is an unattainable utopianvision, that it is an economic impossibility, and that it relies on standardised notions of dis-ability that run counter to the fundamental principles of social model thinking and disabilitytheorising, which put simply incorporates the idea that people cannot be reduced to their

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disabilities and no two people experience disability in identical ways, precisely because disabilityis both social and relational. The best we can hope for is a world that incorporates most people,and that we will have the resources (social, cultural and economic) to accommodate and supportthose people who need such accommodation and support.

In this chapter, I will show how disability historians who have (rightly) embraced thecentral tenet of the social model – the claim that disability is indeed socially created – havealso contributed to the mounting critique of the strong social model. At a time when scholarsand activists are looking for a way out of what Mitchell and Snyder have characterised as the‘two zones of negativity’ that have dominated thinking in disability studies since its foundingmoments in the 1970s (2015: 1), namely that disability is merely the product of sociallyimposed restrictions or that disability imposes real embodied limitations, disability historiansare offering their own alternatives by looking to the past.

US disability historian Paul Longmore seemed to agree with the general critique of theBritish social model. He wrote in his posthumously published Telethons: Spectacle, Disability,

and the Business of Charity that although impairment and disability ‘may seem separable underanalysis … in historical experience they were bound together in intricate and inextricableways that varied according to the kaleidoscope of contexts within which people with dis-abilities lived’ (2016: xviii). He went on to argue that disabled people’s ‘definitions of theiridentities did not fit the framings of charity fundraisers or many disability rights activists, letalone the abstract theories of many scholars’ (ibid.). Longmore then extended his critique astep further and declared in what could be read as a challenge to future disability historiansand disability studies scholars that ‘Stereotypes and dogmas of all kinds have too often buriedthe complicated lived experience of disability under layers of ideological imposition. As aresult, people with disabilities have effectively been made to disappear’ (ibid.).

Longmore, who lived with the disabling effects of the polio virus contracted when he wasseven years old, which ultimately made him dependent on a power wheelchair, a ventilatorand in-home support workers, and who became a prominent disability rights activist andleading disability historian, knew from his lived experience and from his research the insepar-ability of disability and impairment (2003, 2016; Longmore and Umansky 2001). He refused tomake that distinction in his own work and he challenged disability historians and other scholarsto move beyond the impairment/disability divide to a more productive and historicallyaccurate interpretation of the lived experiences of people with a broad range of disabilities.

This is the basic premise from which I will begin my assessment of the relationshipbetween disability history and disability studies. Rather than rehearse an account of the earlyuse of history in the disability rights movement and academic theorising, which I and othershave already written about (Borsay 2011; Burch and Rembis 2014; Rembis et al. 2018), I willprovide the reader with an assessment of more recent work in disability history, all of whichhas been published since the turn of the twenty-first century. By that time, it was becomingincreasingly clear that a new field of inquiry, which had its roots in the disability rightsmovement, disability studies, women’s history and feminist, Marxist and postmodernisttheory, was beginning to emerge (ibid.). Longmore and Umansky (2001) called this a ‘newdisability history’ in order to distinguish it from older, medicalised, pathologised accounts ofdisability.

Initially written from an ‘American perspective’ (ibid.), this ‘new’ disability history hasgrown and matured since 2001. Although certainly not comprehensive, a broader range ofhistories and geographies that extend well beyond the United States and the nineteenth andtwentieth centuries have increasingly become included in disability history (Burch andRembis 2014; Rembis et al. 2018). In places where disability history and disability studies are

Challenging the impairment/disability divide

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particularly well developed – the United States, Canada and the United Kingdom – disabilityhistorians have begun to make significant contributions to broader historiographies of, forexample, industrialisation, the welfare state, war, rights and labour movements, and the history ofeugenics and Nazi Germany (Galer 2018; Gerber 2012; Hampton 2017; Jennings 2016; Rembis2011; Rose 2017; Turner and Blackie 2018).

In this chapter, I will mine this new disability historiography to show how disability his-torians have worked both implicitly and explicitly to question, challenge and reformulate theBritish or strong social model of disability. I will do this by first engaging with historiographythat foregrounds the complex, relational nature of impairment. Historians have shown thatimpairment, like disability, is socially created. It cannot be removed from the material con-ditions and social and economic structures that produce and contain it, nor cannot it beseparated from race, class, gender, religion, sexuality and other markers of identity. Amongother things, this more nuanced way of thinking about impairment makes it impossible tothink of it as existing outside of politics or history. In the second part of this chapter, I willdraw upon the work of historians who more directly challenge the impairment/disabilitydivide by thinking simultaneously about both biology and society, culture and environment.In some cases, this means direct engagement with medicine and the diagnostic categoriesused to pathologise impairment. In countries where more primary sources exist and wheredisability history is currently more well developed, disability historians are increasingly inconversation with historians of medicine. In areas where we do not have abundant printed orwritten documents, historians are using tools from physical or medical anthropology, medicalgeology, archaeology and other disciplines to locate impairment and trace the experiencesand representations of disabled people in the past. In the final section of the chapter, I willoffer some thoughts about how disability historians and disability studies scholars might moveforward.

The social creation of impairment

Disability studies scholars and disability historians do not deny or minimise the existence ofimpairment. Rather, they work to show that both historical and contemporary socialarrangements produce impairment, and that dominant ideas about various impairment cate-gories change over time and vary by culture, region and social class. Scholars have shown,moreover, that the social, economic and psychic costs of impairment, which are always reador interpreted through other markers of identity, are increased in a society that ignores ordevalues its disabled citizens. Far from neutral, apolitical or ahistorical, impairment, like disability,is socially created.

War, work and disease have historically been the largest producers of impairment. Sinceancient times, war has been a consistent source of impairment. In the modern era – from theseventeenth century to the present day – improvements in both military and medical tech-nologies have led to a dramatic rise in the number of impaired soldiers and civilians (Gerber2018). Whether a historian is studying foot soldiers in the ancient or medieval worlds, ormodern ‘grunts’ serving in the Vietnam War, social rank or class and race, ethnicity andgender have influenced not only who becomes impaired, but how their impairments aretreated and evaluated or valued by the state and society (e.g. Kinder 2016; Lawrie 2014).

Understanding impairment is critical to understanding the experiences of the more thanthree million disabled veterans of the Great Patriotic War, as the Second World War wasknown in the Soviet Union (Bernstein 2014). In her essay, ‘Rehabilitation Staged: HowSoviet doctors ‘Cured’ Disability in the Second World War,’ Francis Bernstein analyses three


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plays ‘developed by physicians for popular consumption and performed widely throughoutthe country during and after the war’, to analyse one solution to the Soviet Union’s ‘dis-ability “problem”’ from the perspective of doctors, female caregivers and veterans. Bernsteinargues that through these plays, which she calls ‘dramas of impairment and cure’, Soviet lea-ders ‘“safely” acknowledged and managed anxieties posed by so many disabled bodies’ duringand after the Second World War. Impairment, and more importantly, the rehabilitation and‘cure’ of impairment through the development and application of prostheses and through othermeans, conveyed a powerful cultural message of the ‘civic and patriotic obligations’ of the Sovietpopulace to overcome both personal and national trauma (ibid.: 219). In this case, and in others,cultural representations of the impaired bodies of disabled veterans took on new meanings andexpanded roles, while at the same time disabled veterans themselves were made to disappearthrough rehabilitation and cure.

Through this brief encounter, it becomes apparent that impairment was not only sociallycreated through war, but that the ways in which people experienced their impairments wereinfluenced by gender and by their social location. Male doctors, female caregivers and maleveterans all experienced impairment differently and attached different meanings to impairedbodies. These meanings and experiences, in turn, were not isolated, but rather they werecirculated among individuals and various groups of people throughout Soviet society. Inter-personal encounters, social reactions and the disabling effects of ableist built environments,social policies and programmes cannot be understood in the post-war Soviet Union withoutfirst considering impairment. Time, place and context mattered. The way in which RedArmy veterans acquired their impairments mattered. The stories and meanings that individualpeople and the larger society attached to impairment mattered. When we think of impair-ment as both socially created and historically contingent, new sets of questions and concernspresent themselves. For example, historians and disability studies scholars can begin to assesswhether and to what extent disabled veterans were treated differently than other members ofSoviet society.

Work, like war, has historically produced impairment. Until recently, however, disabilityactivists and disability studies scholars did not focus on the ways in which work createdimpairment. Instead, they argued that work, and more specifically the Industrial Revolution,played a significant role in disabling people living with impairments. The standard argumentran something like this: from the eighteenth century onwards, increasingly regimented,standardised, fast-paced modes of industrial production drove ever larger numbers ofimpaired workers from the labour market, which led to the creation of the modern welfarestate and policies such as disability rating systems, in which impaired bodies were assignedvalue based on their perceived capacity to work. Increasingly alienated from dominant modesof production, disabled people were removed from society and in many cases denied therights, privileges and responsibilities of citizenship. While politically powerful, this ‘indus-trialization thesis’ left impairment untouched. Only recently have disability historians takenon the task of showing how work, like war, produced impairment. Disability historians,moreover, are complicating and challenging the industrialisation thesis by taking a closer lookat the lived experiences of impaired workers and arguing that in fact many of them were notexcluded from the labour market.

One study that seeks to provide an empirical basis for the industrialisation thesis and toconsider the realities of impaired workers’ lives is David Turner and Daniel Blackie’s (2018)Disability in the Industrial Revolution: Physical Impairment in British Coalmining: 1780–1880. Asthey note, Turner and Blackie ‘place people with impairments at the heart of the story’ ofcoal mining in Britain (ibid.: 2) in the 100 years before the 1880 Employers’ Liability Act – ‘a


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landmark, if flawed, legislative intervention that enshrined in law employer responsibility forworkplace accidents that could have been prevented’ (ibid.: 4). In their study, they find that‘some degree of bodily damage was the norm rather than the exception’ in British coal mines(ibid.: 3). Workers, their families and their communities accepted injuries, diseases andailments as ‘daily occurrences’ (ibid.). In many cases, impaired workers continued to work,even if that meant altering the tasks they performed on the job. Turner and Blackie’s studyreveals, among other things, that although historians must take care not to romanticise theavailability and effectiveness of informal supports for disabled people in the past, it is safe toargue that employers, communities and families accommodated impairment for no otherreason than that it pervaded their daily lives. It could not be ignored, or actively dismissed orexcluded, because nearly everyone who worked experienced disability at some point duringtheir lives.

Including a more nuanced analysis of impaired workers’ lives in their study of indus-trialisation enables Turner and Blackie to move beyond the factory floor and welfare legis-lation to include disabled people’s domestic, spiritual and social lives (2018: 6). They presenta more complete rendering of disabled people’s lives and show that while social welfarelegislation and an increasing reliance on hospital care and institutions most certainly com-bined to exclude some workers from the labour market most impaired workers lived fulllives, which could include waged labour in the same industries that had employed thembefore they acquired their impairments. Removal from the labour force and from societywere not the only experiences of disabled people in industrialising Western nations. Begin-ning an analysis of disabled workers lives in nineteenth-century Britain with impairment andnot society’s reactions to it allows Turner and Blackie to consider the important mediatingrole that workers’ bodies played in their experiences in a number of areas that extendedbeyond the factory floor or the doctor’s office. Rather than assuming impairment as eithernegative, a deficit, or at best neutral, this approach in turn enables impairment to assume amore generative role in shaping people’s social interactions and their own identities.

Centring impairment in these more complex and creative ways has allowed historians toanalyse disability outside of traditional industrialised settings. Historians have begun to thinkabout impairment among enslaved peoples, for example. Through her research on disabilityand slavery in the United States, Dea Boster has shown that impairment, usually articulated as‘unsoundness’, shaped and was shaped by the lived experiences of slaves and their masters,and was a significant feature of nineteenth-century legal and medical discourse (2014, 2015).Among other points, Boster asserts that the social creation of impairment always includedrace, age and gender. She argues, for instance, that in the case of Bell v. Jeffreys, whichappeared before the North Carolina Supreme Court in 1852, the court ‘delivered a decisionabout slave “unsoundness” that … was tailored specifically to the slave’s race and gender’(2014: 202). The case involved a near-sighted female slave and her owner who was suing herseller for ‘breach of warranty’ (ibid.: 201). The court upheld the verdict of the jury in the lowercourt, ‘determining that while myopia was not a disabling condition for people in other walksof life, it did constitute a significant unsoundness in the enslaved African American woman’,especially if she was of childbearing age (ibid.: 202). The fear that near-sightedness might beheritable and the assumption that a female slave of childbearing years would breed new slavesfor her master directly contributed to the definition of impairment (unsoundness) amongbondswomen. But masters and the courts did not always have the last word. As much as theycould, slave women and men resisted the immense hold that law and their masters had onthem by taking every means and opportunity, however small, to exert control over their ownbodies and their labour. Boster asserts that ‘Legal and medical writings on slave disability relied


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on many different perspectives and on widespread assumptions about race and gender toestablish boundaries between able-bodiedness and disability in human chattel, but thoseboundaries were a constant source of conflict’ (ibid.). The social creation of impairment was aconflicted process in nineteenth-century America. Masters conflicted with other masters, andthe courts and slaves asserted their own measure of agency. It would not be possible towrite this illuminating history within a strong social model approach that does not considerimpairment.

Labourers in any setting, and soldiers, often became sick – so sick that they became per-manently impaired. Disease, like military conflict and work, has played a significant role inproducing impairment, especially in the years before the widespread availability of vaccines,antibiotics and other modern treatments. Disease remains a significant cause of impairment inthe twenty-first century in countries where modern treatments are not readily available or areinaccessible to the majority of the population. Despite the intimate connection betweendisease and disability, disability historians and disability studies scholars influenced by thestrong social model of disability have remained reluctant to study it. This is changing, how-ever. Leading disability historian, Catherine Kudlick, for example, has taken a keen interest indisease (2013, 2014, 2018).

In her study of smallpox in nineteenth-century France, Kudlick argues that placing theimpairments produced by disease, such as the facial scarring and blindness caused by smallpox,at the centre of the analysis allows historians to consider the role of disability in public healthcampaigns to promote vaccination and in the rise of state bureaucracies interested in countingand delimiting impairment categories. More importantly, however, impairment enables his-torians to think about the ‘longer-term impacts’ (2014: 187) of the disease and the livedexperiences of smallpox survivors, such as Thérèse-Adèle Husson (1803–1831), ‘the daughterof artisans from Nancy in eastern France’, who was blinded by smallpox at the age of ninemonths. In her adult life, Husson became a ‘prolific Parisian writer’ (ibid.: 186). Written bydisability historians, the history of smallpox in France becomes one not merely of outbreakand eradication, but also one of survival, artistic production and social commentary.Throughout her short adult life, ‘Husson was quick to condemn social reactions and mis-understandings more than the disease, especially when it came to her disability’ (ibid.). Thisrich history would be lost if historians overly influenced by the strong social model of dis-ability refused to study the effects of impairment.

This impairment-focused way of thinking about the history of disease has influenced somehistorians of medicine and public health, who have taken similar approaches to studying thesurvivors of other diseases. For example, in their study ‘Integrating Disability, TransformingDisease History: Tuberculosis and its Past’, Beth Linker and Emily K. Abel approach thestudy of tuberculosis from what they call a ‘disability perspective’ (2015: 84), which theyargue enables them to write a history of people living with the effects of both pulmonary andnon-pulmonary tuberculosis, and to move beyond writing a history of disease and its treat-ment to a history that reveals the effects of various state interventions and ‘tuberculars’, asthey often called themselves, responses to those interventions, including public health inter-ventions, military benefits, and the rise of the twentieth-century welfare state. This, in turn,enables them to make larger claims about disability and citizenship. ‘At base’, Linker andAbel argue, ‘disability [which social model theorists would call impairment] throws into reliefthe biological basis of citizenship and thus how tenuous and vulnerable this status is’ (ibid.: 85).Citizenship, artistic and cultural production, and community formation all become accessible tohistorians and other scholars when they begin to consider impairment as socially created.


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Lest we become historians of medicine: the challenges of challenging theimpairment/disability divide

Acknowledging that impairment is indeed socially created, and thereby questioning or chal-lenging the impairment/disability divide does not mean that disability historians mustbecome, or even agree with, historians of medicine. In an essay that appeared in a specialissue of the Bulletin of the History of Medicine, Kudlick argued that ‘our subfield’ has become‘robust enough that it can now afford the luxury of turning to medicine as something otherthan a villain’ (2013: 548). Yet she is clear that it is not time to ‘erase’ what she calls the‘divide between the pathology and social models of disability’ (ibid.: 549). The medical andthe social should remain divided, but not necessarily mutually exclusive. As Kudlick furtherexplains, the two subfields, the history of disability and the history of medicine, which haveexperienced vastly different developmental trajectories, cannot and should not be combinedbecause they are incompatible (ibid.: 541). This does not mean, however, that disabilityhistorians must abandon impairment, leaving it only to medical historians. As Kudlick notes,

Any field [disability history] founded on the political excitement that centered onrethinking disability and the lives of disabled people cannot help but ask those who workwithin it to confront our own sense of embodiment and its relationship to our world.

(Ibid.: 558)

Disability historians must use the tools, the evidence, the questions and the approaches thatthey brought to the study of the social creation of disability to the history of impairment.

Once historians acknowledge that impairment is socially created and that the biological,social, environmental and cultural work together not only to shape bodies, but also to shapethe uses, meanings and values ascribed to those bodies, they can begin to think more criticallyabout the important role that the body has played in disability history. Studying impair-ment – challenging the impairment/disability divide – means studying the history of thebody. This does not mean, however, that disability historians must accept or even adoptdominant pathological ways of thinking about disability, or what might be better articulatedas non-normative bodies. Quite on the contrary, once disability historians embrace the body,they can then work to challenge or deconstruct the notion that certain bodies are inherentlyincapacitated or unfit for various purposes. They can also show how disabled people in thepast used, rather than denied, the biological realities and imperatives of their bodies todemand rights and much needed supports.

Historians of women and gender, and those historians who incorporate feminist thinkinginto their work, have been writing about ‘the body’ for decades. In the twenty-first centurymany of those same historians have become increasingly interested in disability and impair-ment. Leslie Reagan’s (2016) study, for example, which focuses on American veterans of theVietnam War who had been exposed to Agent Orange and who in the late 1970s beganefforts to gain state support for their children who had been born with disabilities, exposesthe interplay among gender, race, disability and impairment in shaping lived experiences.Reagan situates her analysis of Agent Orange survivors and their families within an emergingdisability rights movement that, in the 1970s and 1980s, was moving towards a social modeland disability rights-based approach that sought to move beyond impairment. Yet her evi-dence and analysis show that the biological and the social could not be easily separated.Disability and impairment operated in important ways and on multiple levels in the lives ofAgent Orange survivors and their families.


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Vietnam veteran Michael Ryan and his wife Maureen based their argument for governmentsupport for their daughter Kerry’s disabilities not on abstract notions of liberty, happiness, inde-pendence or access, but on the material condition of her impaired body. They objectified andexploited their daughter’s body before a 1979 Congressional hearing in an effort to receivecompensation from the chemical companies that produced Agent Orange and to make a claim fordisability benefits for their daughter, who would apparently require a high level of care for the restof her life. The extent to which Kerry’s body disabled her was revealed in the metaphors deployedby her mother, who described her daughter as ‘only an 8-year-old kid … as a child’ (Reagan2016: 838), and who argued that her daughter, who was ‘still in Pampers’ (ibid.: 841), ‘had everyright to be on a bicycle instead of a wheelchair. She had the right to grow up to be a woman’(ibid.: 837). To emphasise her case, Maureen Ryan wheeled Kerry into the hearing room inorder, as Reagan put it, to ‘show the Congressional panel the genetic inheritance of her husband’swartime exposure as it had been etched into their daughter’s body’ (ibid.: 838). ‘The Ryans’,Reagan argues, ‘presented their daughter as irrefutable evidence, as an example of the “genocide”that had taken place through veterans’ bodies on the bodies of American children’ (ibid.). KerryRyan’s eight-year-old body, and not the disabling effects of an inaccessible world, were the focusof the Congressional hearing and were the basis for the claims made by her parents.

As Kerry grew up, the lines between impairment and disability became increasingly com-plicated. When she was 13 years old, a Chicago newspaper reported that Kerry was forcedeither to crawl on her knees or to use an expensive wheelchair. She could not read or write.Kerry’s father told the paper that Kerry ‘Sits on the front steps and she watches the kids in theneighborhood grow up. Nobody comes to play with her’ (Reagan 2016: 839). He added hisdeep-felt concern that ‘She’ll never have an interest in boys. She’ll never have a prom. She’llnever be in love’ (ibid.). In Michael Ryan’s mind, his daughter’s impairment/disability pre-vented her from experiencing friendship and other normative stages of life that most peopletake for granted. After Kerry’s mother died, her father was struck by the very real fear that if hedid not outlive his daughter, she might suffer a fate worse than death – institutionalisation.Ultimately, Kerry Ryan died at 35 years of age, well before the average age of white womenliving in the United States, and her father did outlive her after all.

The medical, biological, social, cultural, political and legal intersect in the Ryans’ story inimportant and instructive ways that would not be available to someone using only the strongsocial model of disability to interpret them. Only by employing a more nuanced understandingof the relationship between the biological and social is Reagan able to craft an analysis ofdevelopmental disability, gender and race that captures the often complex lived experiences andperspectives of disabled people and their various circles of support, friendship, family andcommunity. As Reagan asserts,

To some extent, then, Kerry’s parents, along with other veteran parents, participatedin perpetuating disability stereotypes and created a pitiful portrait of their daughter forCongress and the public because they wanted to emphatically make the point thatAgent Orange caused injury and real, indeed, visible damage. They needed to convinceCongress that their daughter had been harmed in order to win legislation grantingthem the medical care and other services their daughter needed.

(2016: 841, emphasis in the original)

For her part, Kerry told a reporter near the end of her life, ‘I think I’m normal’ (ibid.: 842).Normal, pathological, social, medical – each played a role in defining disability and shapingKerry’s life, including her parents’ demands for rights and social inclusion.


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As Reagan’s study shows, thinking about impairment as something other than neutral andapolitical, or an individual deficit in need of cure, correction or elimination, enables disabilityhistorians and disability studies scholars to broaden their frame of reference to include more thanjust those white cis-male wheelchair users who most closely resemble the early leaders of thedisability rights movement and the original authors of the strong social model of disability. His-torians and other scholars can begin to interrogate the histories of other groups, including peoplewith developmental disabilities and chronic conditions and illnesses, and their allies and familymembers. Whether we think about Kerry Ryan, or tuberculars living in the early twentiethcentury, or a blind woman living in nineteenth-century France, we can see not only the absolutenecessity of including bodies in the history of disability, but also the generative potential of takingwhat Tom Shakespeare might call a ‘critical realist’ approach to disability studies.

This more grounded approach to thinking about disability allows historians and other scho-lars to consider certain ‘impairment effects’ that may or may not have any basis in the externalworld, such as physical or emotional pain and suffering, but which are nevertheless just asimportant in thinking about the lived experiences of disabled people. On a more practical level,this approach enables scholars to broaden the scope of their research even further beyondphysical, sensory and developmental disabilities to include madness. For a number of years, madactivists and mad studies scholars have rejected the British or strong social model of disabilityprecisely because it leaves untouched medicalised and pathologised ways of understandingmind/body difference (LeFrancois et al. 2013; Spandler et al. 2015). Blurring the impairment/disability divide allows historians and other scholars to consider pain, suffering, and madnessfrom a more complex and nuanced standpoint that neither completely rejects nor whole-heartedly adopts previously un- or under-theorised concepts like diagnosis, treatment, recovery,cure and care, all of which are critical to understanding not only the lived realities of disabledpeople, but also their claims for rights, inclusion, access and power.

In her study of Borderline Personality Disorder (BPD), Susan Cahn (2014) extends thedisability historian’s gaze further afield, to include ‘mental illness’ or madness, which has longbeen the exclusive domain of historians of medicine. Mixing the social and the medical, andtaking a critical approach to both, Cahn is able to argue that BPD ‘operates in multipledomains’ (ibid.: 259). It is actively deployed in hospitals and courtrooms, in prisons and inlow-cost mental health clinics, as well as in expensive treatment facilities. As Cahn notes,social workers, psychologists and psychiatrists ‘make ready use’ of the BPD diagnosis (ibid.).TV talk show hosts and Hollywood filmmakers also use BPD. Mad people themselves, whomay or may not adopt the BPD diagnosis, manoeuvre through all of these varied sites ofsocial, cultural, legal and medical encounters, leaving traces of their presence and theirinfluence, and in some cases overtly and loudly challenging the power of the medical andlegal apparatus that contain them. While some people may reject medical diagnosis, Cahnargues that the ‘borders, boundaries, and therapeutic treatment [created in the name of BPD]can be desirable and necessary to one’s being, to having a self (however we might define it)’(ibid.: 260). In her efforts to blur the medical and social, and simultaneously to challengeboth, Cahn turns to the memoirs written by women living under the BPD diagnosis, whichshow that some of them consider themselves recovered, others struggle with mental illnessthroughout their lives, and some writers ‘challenge the very categories of mental illness’(ibid.: 266). Suffering, however, is real, and it is consistently portrayed in all of these settingsand sources. No amount of social model or social constructionist theorising can explain awayor somehow undo the emotional and sometimes physical pain experienced by women livingunder the BPD diagnosis and the people who care about and for them. As Cahn’s studybrilliantly reveals, a new social model of disability should include the right to be ill, to


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experience incapacitating distress, and to seek help and treatment in whatever ways mad anddisabled people find effective.

US and European historians, and historians of more recent times, are not the only histor-ians blurring the impairment/disability divide. Although Sara Scalenghe (2014) adopts theUK social model of disability, her work shows that we cannot understand disability in theOttoman Arab world without first understanding impairment. The two are inseparable inthat context. The usefulness of the strong social model breaks down in the Ottoman contextpartly because Arabic-speaking peoples did not have a concept or a word that described anythingthat resembled twentieth- and twenty-first-century notions of ‘disability’. Instead, Arabicsources mention ‘people with blights’, which encompassed a much broader range of peoplethan those who would be considered disabled by more contemporary standards. Various‘blights’ in the Ottoman Arab world included flat noses, baldness, bad breath and ‘even blue eyes’(ibid.: 2). Further complicating disability history in the Arab world is the fact that the phrase‘people with blights’ only rarely appeared in ‘nonliterary sources like medicine and the law’(ibid.: 3). This could be because many blights ‘did not require or were not amenable tomedical treatment and did not affect a person’s legal status in any way’ (ibid.). All this meantthat in order to study disability in the Ottoman Arab world, Scalenghe would have to findimpairments that significantly disabled people living there. In other words, she could not startfrom a social model definition of disability, because it did not exist in that context.

The centrality of impairment in Scalenghe’s study can be seen in the organisation of herresearch and her research questions. She asked, among other questions, ‘In what ways didimpairments disable individuals?’ (2014: 10). Ultimately, Scalenghe limited the scope of herstudy to ‘permanent impairments … that could hinder substantially a person’s ability to parti-cipate fully in some of the major spheres of life, namely the ability to make a living, take part inreligious rituals, sexuality, marriage, and reproduction’ (ibid.: 12). Impairment factors so sig-nificantly in Scalenghe’s work that she organised her study of disability in the Ottoman Arabworld around four categories of impairment: deafness and muteness; blindness; ‘impairments ofthe mind’; and intersex. People with these and other impairments appear frequently in Arabicsources. They acquired them through all the usual means, like birth, war, disease, injury orpoverty. There were also sources of impairment that were more prevalent in or relativelyunique to that specific geographic place and time (c. 1500–1800): consanguineous or ‘cousin’marriages, iodine deficiency and trachoma were all significant in the social creation ofimpairment in the Ottoman Arab world.

Put simply, impairment of bodies mattered in the Ottoman Arab world, but not necessarilyin the ways in which we might assume if we only studied Western, global north, or moremodern societies. Class, gender and age also mattered, but again not necessarily in the ways inwhich we might expect them to matter. Impairments held unique social and cultural values andwere accommodated in unique ways in Ottoman society. Scalenghe found, for example, that‘post-lingual deafness’ was ‘not an insurmountable obstacle to the exercise of personal rights, tothe fulfillment of legal responsibilities, or to most other forms of participation in the social andeconomic life of a given community’ (2014: 51). It was, rather, a ‘situational disability, shapedby variables such as age, gender, class, and other personal circumstances’ (ibid.). Even ‘deafmutes’, who faced considerably more disadvantages in society than the post-lingually deaf, hadtheir impairments accommodated through the law, which sought to maintain ‘an equilibriumbetween their rights and those of the broader community’ (ibid.).

Blindness offers an even more salient example of the connections between impairment anddisability. Because of the prevalence of trachoma and the ‘decidedly favorable representationsof blind people’ (Scalenghe 2014: 86) in the Qur’an and the Hadith, blindness and especially


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blind men were more readily accepted in the Ottoman Arab world. Islamic law ‘strove toinclude and make accommodations for blind people in most spheres of life, the notableexception being the presentation of testimony in court proceedings’ (ibid.). Blindness was notuniversally accepted and blind people faced obstacles and challenges, especially if they werenot elite men, but Scalenghe argues that generally blind people fared better in the OttomanArab world than they did in Christian Western Europe. The ‘highly educated and accom-plished blind scholar and teacher was not an uncommon figure in the Ottoman Arab world’,Scalenghe asserts (ibid.).

In times and places where people did not create or use notions of disability that were similarto later legal, medical and social articulations of it, historians must rely on impairment andimpairment categories to interpret not only societal reactions to bodily difference, but also tothe extent made possible by the sources, the lived experiences of impaired people. Not alwaysvictims, or the subjects of medical or state intervention, some impaired people enjoyedmany of the same rights and privileges and social experiences as their fellow non-impairedcitizens. Other disabled people, living in times and places where modern ideas aboutdisability existed, utilised impairment as a means of gaining rights and support or as a wayof accessing much needed treatment and relief. In all these times and settings, impairmentproved malleable both in its representations and its physical manifestations. Always pro-duced dialectically with age, gender, race, religion, class, and one’s social and culturallocation, impairment is an amorphous yet consistent and powerful force that cannot beignored, dismissed or explained away by a strong social model of disability.

Conclusion

Impairment is socially created. It is not neutral, value free, apolitical or ahistorical, and it isnot limited to physical or sensory impairments. It includes developmental, intellectual andbehavioural ‘disorders’ and other chronic diseases and conditions. Humans produce impairmentthrough their actions (war, work and disease), and impairment is always influenced by race,gender, religion, sexuality and other markers of identity, as well as by material conditions andeconomic structures. Impairment must be considered within its particular social, cultural andhistorical context. In the late twentieth and early twenty-first century, it was reported that 85per cent of people acquire an impairment at some point during their lives and that more than80 per cent of impaired people live outside the United States and the UK (Charlton 1997).The majority of the world’s impaired population live in the global south. Women and poorpeople experience impairment more than men and people with access to valuable resources(Grech 2017). If disability historians and disability studies scholars are to address these peopleand these issues, impairment must become a meaningful part of a revised social model ofdisability.

Incorporating impairment into a revised social model will invariably mean a more complextheorisation of impairment than that which currently exists. This does not mean, however,that the social model need be any less grounded in the lived experiences of disabled people.In his posthumously published work, Paul Longmore noted the layers of ideological impo-sition that have ‘buried’ the complicated lived experiences of disabled people, effectivelymaking them disappear (2016: xviii). This assertion was no doubt motivated at least in part bythe politics of disability, which seeks to overturn commonly held notions about disabledpeople’s helplessness and victimisation on the one hand, and their perceived abilities toovercome and triumph in the face of adversity (the supercrip) on the other. While manydisabled people throughout the world live isolated and alone in abject poverty, the reality for


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many disabled people is complicated and exists somewhere between these two ideologicalextremes. In making his claim, Longmore was no doubt urging disability historians and dis-ability studies scholars to capture that complexity in all its revelatory brilliance. Longmoremay also have been compelled to speak up in response to nearly three decades of cultural andliterary critics’ theorisations of disability. In explaining his standpoint, Longmore specificallymentions ‘the abstract theories of many [disability studies] scholars’ (ibid.). The idea that thelived realities of disabled people could be pondered into non-existence is a point of concernfor many historians and disability studies scholars who do not situate themselves within cul-tural or literary studies. Tom Shakespeare offers a much more strident critique of culturalapproaches to thinking about disability. He argues that ‘Cultural Disability Studies is over-theoretical and does not offer much in the way of practical help in understanding the lives ofdisabled people, let alone changing them for the better’ (2014: 3).

Rather than thinking of disabled people as non-existent or at best suffering under theweight of ideology, I would like to propose that we instead think of disabled people,such as Thérèse-Adèle Husson or Kerry Ryan, as agents in their own lives, as peoplecapable of formulating their own ideas about the social, cultural and historical forces thatboth produce and contain their disability, and as people capable of shaping their ownidentities. None of us, disabled and non-disabled alike, can completely control how weare read and represented, and for those of us living at the edges of society it can be morechallenging to craft our own narratives about who and what we are. Yet I would argue that itis more accurate and more powerful to think of impairment/disability and the formationof ideas about impairment/disability as a dynamic and situated process, rather than animposition. I would argue, moreover, that it would be short-sighted and overly prag-matic to dismiss the ‘abstract theories’ of disability studies scholars. Theory can be useful,and the most useful theories emerge out of lived experience. Think of Gramsci’s ideasabout hegemony, Foucault’s encounters with medicine, madness and sexuality, or AlisonKafer (2013) and Eli Clare’s (2017) thoughts on cure, all of which have been eminentlyuseful in challenging ableist ideologies and structures. Theory grounded in lived experience canraise consciousness.

Instead of dismissing more theoretically complex cultural approaches to thinking about dis-ability, historians and disability studies scholars might be wise to adopt a sociocultural-historicalmodel of disability. Although, admittedly, a cumbersome descriptor, a sociocultural-historicalmodel of disability would, by definition, be intersectional and draw on the most relevant anduseful areas of the social, cultural and historical approaches to studying disability. A socio-cultural-historical model of disability would incorporate the historian’s demand for empiricism,rigour and specificity, the cultural theorist’s need for grand gestures, unifying theories andclever juxtapositions, and the literary scholar’s desire for close readings of individual texts. Itwould explore the interplay between structure and ideology and between the medical and thesocial. Culture and theory would cease to be irrelevant in the minds of some scholars andactivists, as would changes and continuities over time.

We cannot understand the present or think about the future without first knowing thepast. History, with its attendant methodologies, is indispensable in disability studies. Andhistorians can learn a lot by thinking about the theories created by disability studies scholars.In some cases, variations of the theoretical interventions made within disability studies can beused to consider the past. In the end, however, historians must avoid presentism and listen totheir sources. The rich, complex, often contradictory and conflicted lives of disabled people,their allies and their enemies cannot be contained within a strong social model of disability.Disabled people must be set free to wander, limp, roll, tap, jerk, shout, stutter and strut their


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way through our collective imagination. Only then can we begin to capture the power oftheir insight and the variegated beauty of their experiences, as well as the depths and imposingcontours of the ableist structures and ideologies they encounter.

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University of Illinois Press.Rembis, Michael, Kudlick, Catherine and Nielsen, Kim E. (2018) The Oxford Handbook of Disability History,

New York: Oxford University Press.Rose, Sarah F. (2017) No Right to Be Idle: The Invention of Disability, 1850–1930, Chapel Hill: University of

North Carolina Press.Scalenghe, Sara (2014) Disability in the Ottoman Arab World, 1500–1800, New York: Cambridge University

Press.Shakespeare, Tom (2014) Disability Rights and Wrongs Revisited, New York: Routledge.Shyrock, Andrew and Smail, Daniel Lord (2017) ‘On Containers: A Forum. Introduction’, History and

Anthropology. DOI: doi:10.1080/02757206.2017.1397650.Spandler, Helen, Anderson, Jill and Sapey, Bob (2015) Madness, Distress and the Politics of Disablement,

Bristol: Policy Press.Turner, David M. and Blackie, Daniel (2018) Disability in the Industrial Revolution: Physical Impairment in

British Coalmining: 1780–1880, Manchester: Manchester University Press.


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DISABILITY, SPORT ANDPHYSICAL ACTIVITY

Brett Smith and Andrew C. Sparkes

Since we wrote the chapter for the first edition of this Handbook (Smith and Sparkes 2012),research on disability, sport and physical activity has grown considerably. Our aspirationsremain modest in terms of what can covered in this second edition. This chapter does build onthe first edition, though, by offering new insights in three sections. The first section is con-cerned with disability and sport, and focuses on recent work on parasport, social activism andsporting cyborgs. The second section looks at disability and physical activity. Our focus in thissection is on recently evidenced health benefits, barriers to being active, physical activity mes-sengers and forms of communication like infographics, behavioural change strategies, and somepossible problems associated with physical activity. Having considered several challenging issueswithin the first two sections, the third section concludes the chapter by considering somepossible future directions for research on disability, sport and physical activity.

Disability sport

Research has focused on numerous aspects of disabled sport. For example, classification inParalympic sport is an issue that has been elaborated on recently (e.g. Howe 2017).Researchers have looked at the structure, development and governance of the Paralympics,the rise of China as a Paralympic superpower, and technology, doping and boosting inparasport (e.g. Brittain and Beacom 2018). Research has also progressed by attending to dis-ability sport in terms of coach education, the characteristics of a successful coach, and howdisabled people might prefer to be coached (e.g. Culver and Werthner 2018; Martin 2017;Townsend et al. 2018). In order to promote full and effective participation in sport, and todetermine whether disabled people experience this basic human right, researchers haverecently focused attention on not only the quantity of participation, but also the quality. Forinstance, as Allan et al. (2018) found in their study of the meaning and satisfaction that dis-abled adults derive from participating in parasport, what constitutes quality participationchanges over time and involves various elements. These include autonomy – having inde-pendence, choice or control; belongingness – a sense of belonging or acceptance in a group;challenge – feeling appropriately challenged; engagement – feeling engaged, focused andmotivated; mastery – experiencing achievement, competence and self-confidence; andmeaning – contributing towards obtaining a personal or socially meaningful goal.

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Recently, the research agenda has expanded to include disabled spectators of sport. Forexample, work on English football (soccer) fans by García et al. (2017) examined access tostadia, the role that Disabled Supporters Associations (DSAs) might play within football clubs,and what hampers DSAs regarding the enhancing of access. This research highlighted the factthat access to and movement within the stadia was not only restricted by physical barriers.Clubs often provided limited information for disabled fans about buying away tickets andwhat to expect at the stadium. Once inside the ground disabled fans frequently felt unsafeand, with limited opportunities for social relationships to be fostered in the stadium, theirenjoyment of the match day experience was curtailed. Furthermore, while DSAs play apivotal role in helping clubs to improve their provision for disabled fans, they were hamperedin their attempts to effect positive changes by a lack of resources, a limited appreciation thattheir voices really mattered, and an almost exclusive focus by clubs on the physical problemsof access. Various suggestions were offered to improve the situation and, in turn, to counterthe discrimination faced by disabled fans. These included expanding clubs’ understanding ofinclusivity, having a dedicated liaison officer for disabled supporters, and taking legal actionwhen the human rights of disabled people are not met by a club.

Media coverage of disability sport has also come under the spotlight recently. For instance,Grue (2016) contextualised the media coverage of the Paralympics as ‘inspiration porn’ fornon-disabled viewers. Moreover, through a discourse analysis of media texts (broadcast, printand online) McPherson et al. (2016) examined how para-athletes were portrayed before,during and after the Glasgow 2014 Commonwealth Games. They highlighted the fact thatmedia representations of the Games were, in many instances, helpful in that they drewattention to the multiple disabling barriers associated with negative attitudes and in howrestrictive physical structures were said to be accessible but often were not. However, theyalso argued that media representations of para-athletes at the Games depicted male andfemale para-athletes as consistently inspirational.

Although McPherson et al. (2016) did not connect this to the idea of ‘inspiration porn’,they did suggest that remnants of the ‘supercrip’ narrative were evident in these ‘inspirational’media representations of para-athletes, particularly when para-athletes are ‘branded’ assuperhuman. The central feature of the supercrip discourse is success through individualisticattributes of personal courage, hard work and dedication in overcoming the ‘tragedy’ of theirbodies (Smith and Sparkes 2012). Like the idea of ‘inspirational porn’, the supercrip discoursehas drawn significant critique for promoting a medical model of disability and for failing toaddress broader societal prejudice and exclusion (see also Shakespeare 2016). Furthermore,the supercrip discourse has been critiqued for what it can do to disabled people. For example,it has been argued that the discourse makes sporting participation appear unattainable formany disabled people. Thus, rather than inspiring disabled people to play sport, when para-athletes are depicted as supercrips, inspirational or superhuman this might put off somepeople from wanting to engage in sports (Braye et al. 2013). This is one reason why someorganisations, such as Activity Alliance (formerly known as the English Federation of Dis-ability Sport), have moved away from using representations of para-athletes to promote moreactive lifestyles to disabled people.

Another issue that has recently been explored in terms of disability sport is sporting eventlegacies. Governing bodies of disability sport, such as the International Paralympic Committee(IPC), claim that events like the Paralympics offer social change legacies. This includesenhancing the participation of disabled people in sport, increasing awareness of disability,positively changing attitudes, and developing more accessible infrastructure for the host venues.However, the emerging research provides a picture that is more complex than the bodies

Disability, sport and physical activity

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governing sport admit. For example, and keeping in mind critiques of the supercrip notedabove, there is no robust evidence to support claims that events like the Paralympics increasesthe number of disabled people participating in sport. Moreover, as Brittain and Beacom (2016)noted in relation to the London 2012 Paralympics, claims by organisers, government andsporting associations that the Paralympics improved the lives of disabled people in the UnitedKingdom are at odds with findings from disabled people’s organisations (DPOs). These DPOsargued that any Paralympic legacy must be viewed in the context of large-scale benefit cutsthat were implemented in the UK at the time that had a profound effect on disabled peopleand societal attitudes towards disabled people (for example, they were portrayed as benefitscroungers in the media).

At the same time, quantitative (Brittain and Beacom 2016) and qualitative (Hodges et al.2014) work suggested a positive shift in public attitudes towards disability in the UK as aresult of the Paralympics. For example, it was reported that greater sympathy or pity wasshown towards disabled people as a result of people watching the Paralympics (ibid.).Moreover, quantitative research by Paradis et al. (2017) carried out before and after theGlasgow 2014 Commonwealth Games and/or the Toronto 2015 Parapan American Games(where parasport was separated from able-bodied sport) revealed that both events had apositive impact on levels of volunteer awareness of disability and accessibility-related issues.The events also had a positive impact on volunteers’ attitudes towards disabled people.Notably, the integrated event (Commonwealth Games) had a greater impact than the non-integrated event on public attitudes. Overall, Paradis et al. (ibid.) found that attitude levelstowards disability and parasport were already relatively positive among volunteers prior to theGames for both events. This then raises questions about who volunteers at such events, andwhy. Challenging questions remain about how transformative events such as the Paralympicsreally are in terms of bringing about changes in attitude, and what the legacy of these eventsis beyond those who are already positively predisposed towards disabled people in society.

Drawing on data collected as part of their study of the social legacy of the GlasgowCommonwealth Games and the Toronto Parapan American Games, McGillivray et al. (2018)examined the extent to which these events create more accessible infrastructure (e.g. sportand recreation facilities, transportation). They argued that both Games provided the financialsupport and urgency to ensure that sport venues were made more accessible. For example,accessible sports facilities that exceeded international accessibility standards were created.They also suggested that good venue-to-venue transport networks were developed in thename of the Games and enhancements were made to signage to ensure that the Games-timeexperience met sanctioning body and visitor expectations.

Yet McGillivray et al. (2018) also observed that such improvements to access were oftentemporary. That is, the short-term demands of Games delivery were addressed but long-termaccess considerations were not. For instance, they found that at many event venues, in orderto meet accessibility requirements, temporary overlays were used for the duration of theGames but were then removed once the event came to an end. Moreover, they argued thatthe voices of disabled people themselves were not heard adequately in decision-making, aspriority was given to delivery over longer-term legacies. Thus, while the two events offeredsome short-term benefits, McGillivray et al. proposed that they did little to address the sys-tematic barriers disabled people face in the urban environment once the Games are over. Onthe one hand, then, organising committees and sports organisations may announce that anaccessibility agenda has been achieved during the Games, while on the hand, once the hostorganisation disbands after completion of the Games, the social legacy in terms of improvingaccess to the local environment is limited at best. Indeed, as argued by former Paralympians


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themselves, while the Paralympics bring some benefits, they can also be counterproductive tothe lives of disabled people beyond the world of sport (Braye 2016; Howe and Silva 2018;Peers 2012). Such points raise questions not only about the claims made by sports organisations,but also about how active Paralympians themselves view their role in terms of social change.

Although little research exists on the topic of social change and justice, a number of studiesfrom the UK and Canada have focused on the experience of parasport athlete activism. InCanada, Bundon and Hurd Clarke (2015) explored the various advocacy styles that Canadianparasport athletes adopt to promote changes within parasport contexts (e.g. creating moreaccessible and inclusive sports environments). They described a continuum of advocacy stylesamong parasport athletes. These included more congenial styles (e.g. making friendly and quietsuggestions for change), to the more confrontational styles (e.g. demanding inclusive policiesand insisting on rights), to a mixture of congenial and confrontational styles (e.g. engaging in apower struggle). Athletes reported that their choice of strategy was influenced by the perceivedbacklash and effectiveness of advocacy. Bundon and Hurd Clarke further argued that withindisability sport contexts, feelings of exclusion can fuel advocacy engagement, and that advocacycompetence improves with practice. They also noted that within disability sport contexts, it isentirely possible to be included in policy but to remain excluded in practice. Importantly,Bundon and Hurd Clarke highlighted that inequalities within disability sport contexts shouldbe viewed as being inexplicitly linked to wider inequalities in society.

In another study, Smith et al. (2016) highlighted that the 36 elite British para-athletes whothey interviewed and observed in different contexts, including social media, often adopted an‘athlete activist identity’. That is to say the para-athletes advocated for social change withinsport by calling for sporting organisations to provide them with the same opportunities toexcel in sport as those accorded to Olympic athletes. The majority of the para-athletes furtherdefined themselves as ‘athletes first’ but did not view themselves as activists.

In contrast, some people in the study by Smith et al. (2016) did identify as ‘disabled first’.That is, they preferred to identify themselves as ‘disabled athletes’. They did so partly in orderto demonstrate that they were proud to be disabled. Moreover, they believed that takingsuch a stance would help them to build an ‘activist identity’. By this they are referring to aform of activism whereby athletes use their platform as sports performers (e.g. visibility) tospeak out or build awareness about a social cause or issue. For example, the few para-athleteswho adopted an activist identity would publicly speak out against discrimination, campaignfor disability rights, write blogs or tweets that highlight disability inequality, and activelyexploit their status as athletes to challenge disability oppression.

In answering the question how all this was made possible, Smith et al. (2016) noted thatthose athletes who defined themselves as ‘athletes first’ lived in a ‘sporting bubble’ that, untilretirement, largely shielded them from everyday discrimination in society. In contrast, para-athletes who defined themselves as ‘disabled first’ and who were still competing spent timeoutside the ‘sporting bubble’. They were, in turn, prompted to take political action afterhearing stories of oppression outside sport. Importantly for athletes, sports organisations andassociations who are interested in winning medals, these ‘disabled athletes’ reported that actsof activism did not have a negative impact on their sporting performance. This countered theassumptions held by the majority of the participants in the study who described themselves as‘athletes first’. This group of athletes assumed that the emotional effort involved in politicalactivism would have a negative impact on their performance. They also believed that theyrisked being deselected from the Paralympic team if they were perceived to be politicallyactive. Thus, again we find tensions and contradictions between what organisations such asthe IPC claim they are promoting (i.e. social change through parasport) and what disabled


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people themselves believe they can do (i.e. enact social change through activism) if they areto succeed in parasport.

Outside parasport, but intimately part of the process of being an athlete, research hasrecently attended to retirement from elite, disabled sport. For example, both Braye (2016)and Smith et al. (2016) described how some athletes, following retirement from sport,engaged in various forms of activism in order to challenge the discrimination they now facedoutside the ‘sporting bubble’. Bundon et al. (2018) found that some retired parasport athletesencountered discriminatory barriers to employment after leaving sport. They also weremoved to activist behaviours when, upon transitioning outside of the ‘sport bubble’, theyheard numerous stories from ‘non-sporting’ disabled people about how they suffered due tooppressive material structures, discourses, attitudes and practices in society. Echoing some ofthe media research, some athletes warned that because Paralympic athletes are often the mostpublicised group of disabled people there is a regrettable expectation that all disabled peopleought to be able to compete in sport and be hailed as supercrips.

Moreover, in the study by Smith et al. (2016), some newly retired athletes advised thoseathletes that were still competing that they needed to consider becoming politically active or,at least, to gain a better appreciation of the wide-ranging discrimination disabled people facedaily – and which they would likely face when retired, along with health and well-beingproblems (see also Bundon et al. 2018). As one male participant said:

Retiring from competitive sport hit me psychologically. It left me struggling. Iwasn’t happy. I was miserable a lot. I lost a lot of confidence too. And to add to allthis, I woke up in a world that I didn’t really recognize … When I retired and wasout of the sporting bubble I started to see the world very differently. My impairmentwas a route into professional sport, but now society treats me like a second-classcitizen. It’s left me first angry, but soon more defiant, especially when I was told,by strangers, that I’m a drain on society and would be better off dead. I wasn’tgoing to let people off the hook and I felt I needed to do something. Battling fordisability rights is now a daily part of my life, it’s part of who I am now … And ifI could offer one bit of advice to athletes in sport now it would be: ‘Don’t believeall is rosy for disabled people. It isn’t. When you retire, you’ll find this out prettyquickly and retirement will be even more difficult because of the discrimination weface. Retirement will be much more difficult to adjust to. Start being politically activeas an athlete, or at least aware. Use your status as an athlete to bring attention todisability rights if you can … It isn’t time consuming. For instance, sending a tweethighlighting problems only takes 30 seconds.’

(Smith et al. 2016: 145)

Outside of major sporting events (i.e. the Paralympics and the Commonwealth Games) otherarenas of engagement have been explored. For example, Sparkes et al. (2018a) focused on thelife history of a professional male wheelchair bodybuilder to explore the impact of the binaryconfiguration of disabled bodies as opposite and unequal to able bodies, and whether or notcontemporary bodybuilding provides a space in which this dualism can be overcome.Drawing on notions of the bodybuilder as body-garde, which involved a process of‘enfreakment’ that disrupts and transcends contemporary bodily ideals, they suggested variableself-reflexive bodybuilding projects can accommodate contingent conceptualisations of per-fection, including disability, and that this has implications for disabled bodies and identitiesmore broadly.


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With regard to the experiences and meanings of disability sport for those who havebecome involved in it following spinal cord injury, Sparkes et al. (2018b) draw on data froma four-year-long ethnographic study to focus on the process of becoming a disabled sportingcyborg. Their analysis reveals the following phases in this process: from taken-for-granted totechno-survival cyborgs; rehabilitation centres and becoming a technically competent cyborg;everyday life as an embodied cyborg; and becoming a disabled sporting cyborg. The dynamicsof each phase, how they relate to each other, and how they shape body-self-technology rela-tionships over time were highlighted, as were the consequences of cyborgification and theimplications of this process for constructions of ability and disability. Sparkes and his colleaguesraised questions regarding the structural and ethical implications of cyborgification, particularlyin terms of the validation of certain kinds of bodies at the expense of others and the role oftechnology in reproducing social inequalities (see also Apelmo 2017).

Disability and physical activity

Working with Disability Rights UK and Public Health England, a recent review of 237quantitative studies, 18 qualitative studies, and over 15 systematic reviews and meta-analysesby Smith et al. (2018a) revealed that there was sufficient evidence to recommend that phy-sical activity can improve health and reduce the risk of chronic diseases for disabled adults.Evidence collected in the review suggested that two sets of challenging strength and balanceexercises twice per week were needed for health benefits. It was also highlighted that forsubstantial health gains disabled adults should do 150 minutes of physical activity at a mod-erate to vigorous intensity. At the same time there was evidence that disabled adults canaccrue health benefits when they engage in physical activity at a lower intensity (e.g. mod-erate) and duration (e.g. 60 minutes per week), but these benefits were not as large whenactivity is performed at a higher intensity and duration. Thus, while something is better thannothing, it was concluded that for health benefits more is better. This work informs the UKChief Medical Officers’ physical activity guidelines.

The findings regarding health benefits and the frequency and intensity of physical activityfrom the review by Smith et al. (2018a) were echoed in another review that came out in thesame year (Physical Activity Guidelines Advisory Committee 2018). This review formed thebasis of the second edition of the Physical Activity Guidelines for Americans, including thosepeople with disabilities in the United States. A close inspection of the US review, however,reveals that it was framed, knowingly or unknowingly, by a medical model. For example, inthe report impairments like spinal cord injury and intellectual disability were discussed as‘conditions’ or ‘disorders’. Disability organisations and disabled people’s voices were alsoomitted in the production of research questions, the identification of which research methods(e.g. randomised control trials) to include and exclude, and what future recommendationsshould be made. In other words, in contrast to the review by Smith et al. (2018a), the onlyexperts involved were the ‘scientists’. We pick up this issue later via co-production.

Despite the benefits of physical activity for health, disabled people are more likely to beinactive compared to non-disabled people. For example, in the United States, 54 per cent ofnon-disabled people reported to carry out 150 minutes per week of moderate to vigorousintensity physical activity, whereas only 21 per cent of disabled Americans reported meetingthat figure (Carroll et al. 2014). In the UK, it was reported that 43 per cent of disabled peoplewere active for less than 30 minutes per week, while for non-disabled people the figure was21 per cent (Sport England 2017). There are many reasons for such health disparities andinequalities. These reasons are commonly captured under the issue of ‘barriers’. In numerous


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countries similar barriers to physical activity for disabled people have been identified (MartinGinis et al. 2016; Richardson et al. 2017; Wadey and Day 2018). These include inaccessiblephysical environments (e.g. poor transport to green spaces to move about in, gym doorwaysthat are too narrow for wheelchair access, and inaccessible bathrooms or changing rooms),unsuitable equipment (e.g. no pool chair or arm cycles), cost, ‘over-protective’ others, personalconcerns about safety, bad weather, limited social support, lack of motivation, apprehension ofattracting unwanted attention, and negative societal attitudes about disability from others (e.g.customers and staff at leisure centres).

Another well-documented barrier to being physically active is a lack of accessible knowl-edge/information about physical activity (Jaarsma et al. forthcoming; Martin Ginis et al. 2016;Wadey and Day, 2018). That includes not only knowledge about what opportunities existfor people to be active, but also what benefits there are to being active, how much activityshould one do, and how safe is physical activity. Thus, in order to help to promote physicalactivity it is vital that appropriate audience-specific messages are created to help to impartknowledge about active lifestyles. Led by Professor Martin Ginis, work in Canada is addres-sing this in terms of spinal cord injury by producing and disseminating evidence-based andaudience specific information on physical activity.

One of the ways that the team in Canada is doing this is via physical activity toolkits that areshared with people with spinal cord injury by peers, researchers and user-led or community-based organisations, for instance. Furthermore, research has identified that personal stories are aneffective way of disseminating physical activity knowledge about spinal cord injury (Smith et al.2015). Meanwhile, another group of researchers (Smith et al. 2018a, 2018b) co-produced anevidence-based infographic to communicate physical activity recommendations for a range ofexperiences of disability. The infographic was chosen as a useful format by disabled people tocommunicate knowledge about physical activity, and was subsequently endorsed by the UKChief Medical Officers and is promoted by Public Health England. The infographic is currentlyalso being translated into multiple languages by different disability groups around the world.However, key to this was the importance of co-production in creating the infographic.

Smith et al. (2018a, 2018b) worked with over 350 disabled adults (people who havelong-term physical (e.g. spinal cord injury), sensory (e.g. visual impairment), cognitive (e.g.learning difficulties), and/or mental impairments (e.g. depression)) as well as ten disabilityorganisations and 50 health professionals to understand how the evidence-based physicalactivity recommendations created from the review could be best communicated. Duringthe course of working with these groups on multiple occasions several challenging issuesemerged. One challenge was that the disabled adults, organisations and health professionalsrecommended unanimously that affect (e.g. physical activity makes you feel good) shouldbe at the heart of any physical activity messages for disabled adults. That was challenging as,on the one hand there was little high-quality research evidence on affect and physicalactivity messages to base decisions on what to include in the infographic, and how it should bepresented. Yet, on the other hand, the experiential knowledge of the disabled adults sharedduring the co-production process revealed the importance of affect for them in gettingphysically active and enabling them to stay active. They thus strongly recommended thatresearchers and policymakers should give pleasure, fun and enjoyment serious considerationin future guideline development and public health campaigns. Despite newly emerging‘scientific’ evidence, and the challenges of working with the government which prioritisedthat evidence, affect was placed at the heart of the infographic.

As part of creating audience-specific messages about physical activity through an infographic,the co-production process also highlighted that sedentariness was an important concern for many


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disabled adults (Smith et al. 2018b). However, the disabled people involved in the study unan-imously stressed that any messages about sedentariness must avoid ableism. Although oftenunintentional, numerous messages about sedentariness in the physical activity domain around theworld connect with ableism. Ableism refers to the prejudice in favour of able-bodied people andthe discrimination against disabled people. For example, ableism in sedentary messaging offeredby many researchers or policymakers in the physical activity domain takes the form of messageslike ‘stand up, sit less’ or ‘sit less, move more’. As stressed by many of disabled people during theco-production process, such messages favour certain bodies (e.g. those that can stand or easilyavoid sitting) while discriminating against others (e.g. wheelchair users). They thus stated that ifpolicymakers, researchers, sports organisations and so on are to not discriminate against disabledpeople and embrace inclusivity regarding sedentariness, it was vital that any messages aboutsedentariness avoid ableism. Hence, rather than promoting the message ‘stand up, sit less’ and soon, new messages were created with disabled adults and included in the final infographic.Furthermore, these insights were shared on multiple occasions with the UK SedentaryBehaviour Group that in 2019 was advising the government about sedentariness and wasdrawing up new guidelines that were due to be published that year.

Along with producing more accessible information on physical activity, researchers havealso sought to identify who disabled people believe are the most credible messengers topromote physical activity. Messengers are a vitally important for effective physical activityknowledge dissemination. Understanding whom the audience considers to be credible, pre-ferred sources of information is key to ensuring that any information created is taken onboard rather than ignored. From the perspective of promoting physical activity to disabledpeople, researchers have identified several key messengers (Jaarsma et al. forthcoming; Letts etal. 2011; Martin Ginis et al. 2013; Smith et al. 2018b; Sparkes et al. 2019. These include peerswith impairments and community-based organisations.

Health professionals, particularly physiotherapists, are trusted to promote physical activityfor disabled people. Despite being identified by disabled people as important, this does notmean that messengers like physiotherapists will engage in physical activity promotion. Forexample, Williams et al. (2018) investigated physical activity promotion among physiotherapistsworking in spinal injury rehabilitation units/centres. They found that these health professionalsvalued physical activity for numerous health benefits. However, few actively promoted physicalactivity. One reason for this was that physical activity promotion was deemed to be not part oftheir role as physiotherapists. A further reason was the perception held by some physiotherapiststhat not all people with spinal cord injury, especially those with higher-level injuries and sub-sequent paralysis, would want to see others with less paralysis and more function participatingin physical activities. Structural barriers, time constraints and limited funding from the healthcare system to support physical activity initiatives were other barriers that the physiotherapistshighlighted for not promoting physical activity to people with spinal cord injury.

In addition to physiotherapists, peers, and community-based organisations, social workershave been identified by disabled people as being credible and desirable messengers for pro-moting physical activity or sport. They have the potential advantage of reaching millions ofdisabled people. That is because in many countries they are a vital and regular point ofcontact for disabled people. For example, with the implementation of the Care Act in theUK in 2014 social workers are often important in assessing the needs of disabled people,providing face-to-face personal budget support, and producing care and support plans withthem. Such plans can legitimately include the use of personal budgets to become or stayphysical active for well-being, health, and independence purposes. Moreover, social workersregularly deliver community-based care services that can provide multiple opportunities to


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communicate physical activity information and support the well-being and human rights ofdisabled people. Thus, as Paylor argued:

Social Workers could have a valuable role to play in promoting the benefits of sportand physical [activity] … Social Workers are in an ideal position to recognise thosepeople which need to be supported and encouraged to participate in a greater levelof physical activity. This could contribute to lowering the demands upon health andsocial services in the future, whilst improving the wellbeing of those people workingwith services.

(2010: 86)

While social workers are highly credible and believable physical activity messengers who canreach out to many disabled adults, no research on how they might promote a more activelifestyle exists. Work needs to be done with this group in future. That research might includeidentifying the appetite among social workers to promote physical activity, possible barriersand facilitators to promotion, and the co-production of physical activity guidelines specifi-cally for social workers. As part of this all, research will need to address the challenge ofdisabled people being accused of being ‘welfare scroungers’ when they use personal budgetsto support their choice of physical activity. That is also necessary because there may be theperception that if a disabled person can exercise or play sport then they should automaticallynot be eligible for a personal budget. To keep their budget, they may then believe that theyshould stop using their budget for physical activity or sport purposes. In so doing, theirpersonal choices and control over how to use a budget is, like in the past, restricted.

In addition to creating audience-specific messages via infographics and other formats totackle the lack of credible information disabled people have about physical activity, andidentifying who are most desirable messengers, in order to address further how to promotephysical activity researchers have increasingly focused attention on behavioural change stra-tegies. A special issue in 2018 of Psychology of Sport and Exercise entitled ‘Disability Researchin Sport and Exercise’ examined this issue in close detail. For example, a meta-analysis ofphysical activity interventions in disabled people by Ma and Martin Ginis (2018) concludedthat interventions to increase physical activity in disabled people are effective. That wasespecially so when theory was used to guide the development of behavioural change tech-niques to test in interventions. Against this background arguing that behavioural changetechniques are effective, systematic reviews by Jarssma and Smith (2018), and Tomasone et al.(2018) sought to identify what types of techniques are most useful for encouraging disabledpeople to change their physical activity behaviour. The results included barrier identificationand problem solving, goal setting, reviewing behavioural goals, action planning, motivationalinterviewing, and social support behavioural change techniques. Thus, a combination ofthese techniques were recommended to organisations and individuals to help to promotephysical activity among disabled people.

While there is a growing amount of research espousing the benefits of physical activity,and how it might be promoted, it is important to remember that physical activity does notappeal to everyone. Nor is it a panacea for all health issues. Moreover, the promotion ofphysical activity should in some instances come with various cautions. For example, in theirexamination of the meanings of physical activity in the lives of people with spinal cord injuryresearchers (e.g. Papathomas et al. 2015; Perrier et al. 2013; Monforte et al. 2018; Monforte etal. forthcoming; Williams et al. 2018) have highlighted the dangers of what was termedexercise as restitution. Restitution involves the goal of recovering from spinal cord injury


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through extensive exercise. It holds the basic developmental storyline of ‘yesterday I wasable-bodied, today I’m disabled, but at some point in the future through exercise I’ll be able-bodied again’. This narrative acts for and on disabled adults by providing the motivation toexercise in order to be able to walk again.

Although the narrative of exercise as restitution can be beneficial by fostering and supportinga determination and commitment to exercise, there can be negative consequences in pursuing acure via exercising. The narrative promotes a medical model of disability and depicts disabilityas a tragedy that must be overcome. The restitution as exercise narrative can foster the hopeand expectation of cure, but this at this present time is extremely unlikely to be achieved.Failure to achieve the goal of restitution when one is so wedded to that narrative can in thelong term harm well-being and damage relationships. Another concern with restitution is thatit is a commodity that some disabled people can purchase but others cannot, thereby perpetu-ating inequalities and reducing human rights to economic privilege. Moreover, the narrative ofexercise as restitution ignores the sociostructural conditions that oppress disabled people and,without the right economic conditions in place to build home gyms and so on, restrict theirexercise participation.

Possible directions of travel

Reflecting first on the directions of research put forward in our chapter within the first edi-tion of this Handbook (Smith and Sparkes 2012), it is interesting to note some progress. Forinstance, one direction we suggested was to expand the data collection methods used inresearch. While qualitative interviews and cross-sectional quantitative work still dominate thesport and physical activity research landscape on disability, different methods are being morewidely used. These include visual methods, observation, digital methods, timelining, cohortstudies and randomised control trials. In future, researchers might also expand understandingsof ‘data’ to include what has been termed transgressive data (see Koro-Ljungberg et al. 2018).Research can also extend into the application of different analytical methods, such as the useof conversational analysis.

Another future direction suggested in our chapter in the first edition of this Handbook wasthe study of ‘green’ (e.g. woodlands) and ‘blue’ (e.g. the sea) settings. Disability research isnow developing in this area. For example, drawing on ethnographic research Macpherson(2016) explored the experiences of members of blind and visually impaired walking groupswho visited parts of the Peak District and the Lake District in Britain. She highlighted howthese groups of disabled people derived well-being and health benefits by visiting and walk-ing in these green spaces. The well-being and health experiences of visually impaired walkingparticipants included the exploration of outside of known (usually urban) routes, reachingsummits and areas that have collective symbolic value, the facilitation of social networks, andimprovements in physical fitness and self-reported weight loss or maintenance. In future,following Bell et al. (forthcoming), research on blue and green spaces might travel in morecritical directions by drawing on post‐humanist theories of social practice.

Along with these suggestions for the future, a major challenge to moving forward revolvesaround making a real difference. For example, as we have noted, events like the Paralympicsmight produce short-term benefits, but we are a long way off from them making a real dif-ference to the lives of disabled people in the long term. Research is still needed that documentswhat events do and do not do. We also need more sports research committed to a praxis forradical change. However aspirational this might sound, bringing about real change is a goaltowards which disabled people, academics, policymakers, sports organisations, governments,


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and local authorities all need to work together to achieve. Progress is being made, but muchmore is necessary to make changes that have a positive far-reaching impact on disabled people.

Also necessary is research on physical activity that is committed to a praxis for radical change.Despite the adoption of the United Nations Convention on the Rights of Persons with Dis-abilities, it is clear that disabled people continue to face profound barriers to physical activity that,in turn, exacerbate health inequalities. What is needed is not more and more work that identifiesbarriers. Rather, research is needed on how barriers in society can be lowered so that disabledpeople, if they wish, can participate fully in physical activity. To help with this, much morephysical activity (and sports) research needs to be co-produced. While it would be a mistake tosay there is no co-produced work in our field, progress has been slow. Mindful of such issues as‘consultation fatigue’, the tensions between health promotion under neoliberalism and theemancipatory goals of disability movements, and pressures to tokenise and co-opt co-production,we need to direct more efforts to advance co-production in disability, physical activity and sportresearch. We also need more implementation research in community settings. Moreover, inorder to facilitate real change, researchers need to develop systematic contacts with physicalactivity organisations, policymakers, political figures and the media, and with practitioners such asteachers, health workers, social workers and government officials. This includes working withdisabled people not simply in the global north, where the vast majority of sports and physicalactivity research is done. It also needs to include working with disabled people in the globalsouth, where there is limited research on the topic (Mojtahedi and Hisayo Katsui, 2018).

Such directions of travel are not easy. But, if major changes are to happen in terms ofaccess to quality physical activity experiences, and if people are to make real differences tosport participation, spectating and legacy, then perhaps we should together engage in moreradical and praxis-focused research. We look forward to a future then that is less focused onwhat ‘is’, and more focused on what ‘could be’ or ‘ought to be’ (Gergen 2015).

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WE HAVE NEVER BEENABLE-BODIED

Thoughts on dis/ability and subjectivity fromscience and technology studies

Vasilis Galis

The plot of the 2018 science fiction film Upgrade is set in the near future, where technologycontrols nearly all aspects of life. Within this technologically deterministic dystopia, Grey, aself-identified Luddite, has his world turned upside down when his driverless car is hacked bya gang of bandits who kill his wife and leave him quadriplegic. His only hope for vengeanceis an experimental artificial intelligence implant called STEM that will ‘upgrade’ his body byhelping Grey to regain his motor functions. STEM constitutes an attempt to bridge the gapbetween Grey’s brain and his limbs; however, it also has a mind and a voice of its own. Thisis exactly what makes the film plot special. STEM is not a magic chip that simply enableshumans to walk and complete tasks as usual. As Grey makes decisions and converses withSTEM, the film renders the upgrade much more believable, and the human subject muchmore complex than if determined solely by the binary of the biological self and the technicalother. The cinematographic hybrid of STEM-Grey asks whether humans really can beinnocent of murders committed by an entity with whom they share a symbiotic relationship,reminding us of Bruno Latour’s ‘if someone shoots another with a gun, who is doing theshooting – is it the person or the gun?’ (1999). Where does Grey stop and where does STEMstart? What are the limits/thresholds? Are there any?

Life in industrialised societies is marked by the proliferation of a swarm of technological devices,digital applications and online services that interfere with the body and enact hybrid subjectivities.Smartphones and mobile technology platforms, computers, dating sites, online newspapers, smartchips, self-monitoring sensors, cochlear implants and neuromodulation technologies, classificationtechniques, social media networks, continuous positive airway pressure devices, e-health systems,and so on, are some of the technological creations that interact with corporal subjects and producenew practices, emotions and subjectivities. The theoretical point of departure of this chapter is toundo the modern understanding of what constitutes ‘properly human’ or ‘technical’ in order toredefine the notion of dis/ability. The aim of this chapter is to challenge the binary thinking thatalso echoes the Cartesian split, which creates divisions between the body and mind, society andthe individual, technology and biology, disability and impairment, thereby proliferating aninfected, ambivalent and hybrid approach to the human subject (Shildrick 2010).

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To paraphrase Latour, we have never been (modern) able-bodied, but how exactly can weacknowledge dis/ability through the lenses of science and technology? How can disabilitystudies develop a conceptual arsenal for shaping the human subject without reproducingdistinctions between the body and technology, between the natural and the artificial, orultimately between the self and the other? How can we also use dis/ability as an analyticalmetaphor beyond the biological or the technical (prosthetic) to account for dis/abling prac-tices and experiences? How can disability studies look outwards without losing its radicaledge (Corker and Shakespeare 2002)? This chapter will answer these questions, first byunpacking the parallel paths that disability studies and science and technology studies (STS)have followed in the history of ideas. I then move on to examine disability as a relationalphenomenon, abandoning the focus on the individual body. To achieve this, I will refutethat which social theory has defined as ‘human’ and as ‘technical’, respectively. I will pro-blematise by exploring and employing the concept of biopolitics as a source of dis/ablingagency as well as the concept of dis/ability as it relates to the constitution of the humansubject in general by applying it to the example of border crossing.

From determinist essentialism through social constructivismto post-modernity

The study of dis/ability and research in the field of technoscience have followed relativelyparallel paths in the history of ideas. Initially, essentialist approaches to the human body havedominated the understanding of dis/ability, whereas determinist approaches have informedsocial investigation of technoscience. The rise of powerful social-scientific discourses, such asmedical science in general and psychiatry in particular (see Foucault 2003), during the nine-teenth century legitimised a rather medicalised approach to people with disabilities, namely theclassification of illness, the medicalisation of impairment, the dominance of medical experts, andthe broad institutionalisation of people with disabilities in asylums (Barnes et al. 1999: 18–20).By the start of the twentieth century, technology, medicine and science policies were related todisability in a way that also threatened the social, economic and cultural lives of people withdisabilities (Roulstone and Prideaux 2012). According to Foucault,

the main function of medicine [through the sovereign state] is public hygiene, withinstitutions to coordinate medical care, centralise power and normalise knowledge …

We see the introduction of more subtle, more rational mechanisms: insurance, indivi-dual and collective savings, safety measures … I am simply pointing out some of bio-politics’ starting points, some of its practices and the first of its domains of intervention,knowledge and power: biopolitics will derive its knowledge from the birth rate, themortality rate, various biological disabilities and the effects of the environment.

(2003: 245)

More specifically, with the establishment of welfare systems (such as social insurance systems),the nation-state took over the management of disabled populations, which became subject to‘rational mechanisms’ of measurement, evaluation and diagnosis. For example, during theemergence of the modern Greek nation-state in the 1830s, the choices for addressing problemsrelated to disability involved various methods of institutionalisation for individuals with physicalor mental impairments. The first governor of the Greek nation-state (1828–1833) attempted toapply a kind of social welfare by establishing a number of hospitals and orphanages. Meanwhile,the Greek nation-state established a welfare institution in 1932, and the government submitted

We have never been able-bodied

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a bill to parliament to establish the Social Insurance Organisation (IKA). IKA aimed to insureprivate sector employees against sickness, disability and old age in large urban centres such asAthens. However, IKA’s role was rather limited due insufficient funds and, therefore, socialprotection at that time was limited to institutional charity (Galis 2006). Despite their applicabilityand serviceability by the state to manage and accommodate disabled populations, these adminis-trative and policy instruments and institutions were permeated by a strong medical approach. Inother words, disability was perceived as a condition that must be treated, rehabilitated and insti-tutionalised with the help of physicians, psychologists and special pedagogues. In this framework,medical experts define individual needs with the aim of minimising the negative effects of thebodily handicap, whereas public policies aim to address ‘special needs’ and ‘personal difficulties’(Siebers 2006: 173; see also Llewellyn and Hogan 2000: 158; Barnes et al. 1999: 21).

Throughout the same period, science and technology appear as something that exists outsidethe realm of politics and are defined through the neutral and objective lenses of rational scientificmethod. During modernity the unquestioned authority of natural scientists and physiciansallowed them to speak in the name of precision and scientific validity regarding technoscience(cf. Collins and Evans 2002: 239). As a result, the hegemonic approach to investigating tech-noscience corresponded to an objective scientific-technocratic rationality (Scott et al. 1990: 474).In this context, reliance on scientific expertise was seen as a precondition for valid research: ‘anestablished and accountable aim of technoscientific praxis’ (Galis and Hansson 2012).

However, the discourse on disability has not been constituted by a single hegemonic dis-course, e.g. a ‘medical gaze’. Moser argues that both the study of technoscience as well as theworld of disability politics are ‘contested fields, where discourses are appropriated by actors inorder to struggle for the meaning of words and the order of things’ (2000: 202). Accordingly, inthe late 1960s the medical approach’s preoccupation with bodily impairment and the impairedbody as the determining metaphor for dis/ability were severely criticised and rejected by dis-ability actors (Oliver 1996; Barnes 1998: 67). This reaction not only targeted the preoccupationof the medical model with essentialist conceptualisations of physical conditions of disability, italso inspired the development of a strong disability movement, initially in the United Kingdomand subsequently throughout the Western world (Blume and Hiddinga 2010), and the estab-lishment of a social-scientific approach to dis/ability. The social model circumvented the notionof self and situated dis/ability in material and social exclusions. In this framework, material/structural and cultural barriers in labour, urban spaces and public institutions, together with biasedscientific and cultural perceptions of normality, are generators of dis/ability. Consequently, thedisability movement uses the social model as a politically effective tool for translating impairmentinto social constructions and physical barriers imposed by able-bodied people.

Correspondingly, during the same period the positivist and technocratic view of technolo-gical development was strongly challenged by a new wave of social studies (social con-structivism) that questioned the authority of expertise while epistemologically supporting theviewpoints of lay groups, activists and social movements. The social constructivist approach toscience and technology shifted the focus of attention from the impact of technology on societyto the social practices and power relations involved in technological development. For exam-ple, the construction of metro systems (Galis 2006), the design of wheelchairs (Winance 2006),the configuration of cochlear implants (Blume 2010; Mauldin 2014), in addition to assistivetechnology (Ravneberg 2009) and self-care technology (Brodersen and Lindegaard 2016),which not only shape or redefine dis/ability, but are grounded in contemporary society and itshegemonic narratives: ableism and neoliberal capitalism. This shift of perspective enables us tounderstand that both dis/ability and technology can be performed in other ways. For instance,when certain relevant social groups (Pinch and Bijker 1984) or concerned groups (Rabeharisoa


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and Callon 2002; Callon 2003), such as AIDS patients (Epstein 1995) or organisations forpeople with muscular dystrophy (Rabeharisoa and Callon 2004), break out of the standardconfiguration of medical/technical knowledge production, the power of medical expertsdisintegrates.

The social model of disability has played an important role as a scientific and politicalinstrument for identifying and confronting structural and legal barriers that impede the fullparticipation and citizenship of people with disabilities (Blume 2013), linking social theory toactivism. However, several voices have raised concerns about the inability of the social modelto address everyday embodied experiences of people with disabilities in terms of technologyetc. As Shakespeare argues, ‘The social model defines disability in terms of oppression andbarriers, and breaks the link between disability and impairment. This has led to the commoncriticism that the social model approaches have neglected the role of impairment’ (2013: 38).In this way, personal experiences, the range of impairments and their impact on individualbodies over their lifetime, and interactions of the body with its surroundings are entirelyoverlooked. STS and critical disability studies (CDS) contribute by bridging modernistdivides (body versus society, materiality versus culture), linking the dis/ability embodiedexperience with socio-material configurations, and providing some conceptual tools for lifebeyond the social model of dis/ability (cf. Galis 2011).

We need these tools to broaden our understanding of the interaction of the body andtechnology in comprehending the experience of dis/ability. Ultimately, we want to trans-cend both social constructions and technology to feel and shed light on the embodiedexperience of dis/ability. We see this experience located neither within people nor withinsociety, but in the particular sociomaterial configuration of relations and practices thatsimultaneously produce the social, the technological, the embodied, the subjective and thehuman (Moser 2006: 376). Such an argument surpasses distinctions between human andnon-human, body and experience, disability and impairment. In line with Shakespeare(2013), I conceptualise dis/ability as a complex hybrid of biological, psychological, culturaland sociopolitical factors that cannot be separated. This implies a radical redefinition of whatwe perceive as social, technical, natural and/or human. Any of these factors, as well as theirdiscursive and material boundaries, are thus understood as relational effects. The way in whichwe experience and define dis/ability equally partakes in the production of a hybrid dis/abil-ity. Consequently, the subject is a product of interactions between technologies, bodies andother material arrangements, ‘as well as how they are enabled in practice’ (Moser 2006: 377).In the following section, I will review cases from the field of STS that apply this theoreticalvocabulary in the study of disability and technology.

From the individual to relations

This section aims to summarise conceptualisations of dis/ability through the analytical lensesof STS, which remove the focus from the individual and turn it to relations and inextricablecombinations of subjects and objects. Over the past 20 years, STS has focused on dis/ability-related topics, including the link between disabilities and technology. In 2000 Ingunn Moserquestioned the normative discourses inscribed in analytical models for dis/ability and tech-nology that constitute the individualised human subject as the only possible starting point.Instead, she adopted an approach inspired by the actor-network theory (ANT), which treatsdis/ability as the result of how different sets of relations are configured and reconfigured. Shealso employed the metaphor of the cyborg to account for ‘the struggle for subjectivity’ that isthe heterogeneous work between different conditions and materials that define dis/ability.


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Her informant, Olav, does not have control over his body. Following a stroke 15 years ago,the right side of his body is partially paralysed. Olav’s technical aids compensate for some of hislost functions, such as the ability to talk and write. Technology appears to provide Olav withgreater independence and a better quality of life. In this way, technology is portrayed as anormalising prosthesis for the individualised human actor (Moser 2000). This description echoeswhat Roulstone defines as the deficit model of technology benefits. According to this model, themain role of technology is not only to correct deficits emerging from impairments but also to‘be the enhanced supply of employment-ready disabled people’ (Roulstone 1998: 113). Inother words, technology stands as a correction mechanism that advances the individual body,enhances educational deficits, and normalises the disabled subject in the labour market.

Moser explains that the deficit model ignores one important point. We must abandon theindividualised human subject as the point of analytical departure, and instead question how thedeficit approach becomes the norm. Inspired by ANT, we shall adopt an empirical descriptiveapproach in order to trace how different actors are perceived as the norm (Moser 2000: 222).ANT argues that both nature and our built environment are produced by society and cultureinstead of being ‘given’ outside society or socially constructed (Moser 2003: 26). This is whereSTS can be valuable to disability studies. Following ANT, the study of disability should departfrom the assumption that the impaired body is not isolated but is part of reality, and vice versa.Actor networks are interconnected complexes through which human and non-human actorsevolve, interact and perform effects, such as the loss of function or a diminished ability tofunction (ibid. 2000: 205). The actor-network metaphor was introduced to monitor thedynamic links between different actors such as bodies, places, discourses, artefacts and experi-ences (ibid. 2005: 670). ANT describes how actors within a network take their form andacquire their characteristics because of their interrelations with other actors in the network (cf.Law 1999: 3). For example, a fully accessible metro system equipped with ramps, guiding lines,signposted facilities in Braille, visual and audio beacons, and other aids produces dis/abilityresulting from associations between the human body and these material semiotic entities (Galis2006). When the speech machine of a person with a reduced ability to speak malfunctions/, s/he is incapable of making herself/himself understood (Moser 2000: 223). In other words, ANTillustrates how actors and networks are enabled/disabled in relationships (Law 1999: 5).

Using the conceptual lenses of ANT, the study of disability focuses on relations betweenthe body (including the disability experience) and technology, not on top of impairment butas a relational phenomenon. Thus, using ANT does not involve the privileged study of eitherimpaired bodies or sociomaterial environments. Interactions between bodies and materiality/culture perform action or inaction, ability or disability (agency). What would happen if wewere to design and construct urban environments exclusively for wheelchair users, write bookssolely in Braille, or communicate only in sign language? Who would experience dis/ability inthose cases? The relations between actors determine their experiences (Galis 2011). However,Moser (2000) explains that ANT fails to recognise Olav’s multiple struggles in creating hisidentity (subjectivity). To compensate for this, Moser turns to the cyborg metaphor that advancesthe analysis to ‘embody complex, heterogeneous, partially related subjectivities, as well as a moreopen and inclusive humanity’ (ibid.: 236). This is a formed, transformed and adjusted humanagency, or subjectivity.

The discussion above provides social theory with tools that allow us to avoid sociologicalreductionism and/or technological determinism when studying dis/ability. As mentioned inthe Introduction, our goal is to refute the Modern Project’s definitions of ‘human’ and‘technical’. In the following section, I will discuss the politics of sociotechnical embodimentsand the production of dis/ability subjectivities. Abandoning the human body as a unit of


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analysis, we will move towards a somatechnical1 approach. We will focus on the ‘disabledsubject’, which is constituted by a network of heterogeneous interactions that enable ordisable the very idea and conditions of being capable, of being human.

Embodied technologies or technologised bodies?

I have already argued that social theory should not limit our understanding of dis/ability tomedical or social constructions. On the contrary, we should conceptually strive to think of dis/ability as ‘a highly complex and intrinsically ambiguous designation that cannot be addressedadequately by positivist and binary-based models of analyses alone, be they biomedicine orsocial constructionism’ (Shildrick 2005: 768). CDS and feminist technoscience reject themetaphor of the prosthesis (ibid. 2010). Take, for example, implanted technologies. In a paperthat problematises the importance of materiality and explores how people live (and learn tolive) with spinal cord stimulation (SCS), which is a type of neuromodulation technology, LucieDalibert (2016) points out that implanted technology changes bodies, but that simultaneouslyhuman bodies determine the efficiency of SCS. In other words, our analysis should not berestricted to the materiality and agency of the skin or the technological artefact, but should takeinto account the integration of bodies with SCS for the liveability of the implanted technology.Here, dis/ability refers to the successful or failed fusion of somatechnics.

While the embodied experience of SCS is essential for living with the technology, it is notenough to live well with it: the technology must be part of the subject and its surroundings.Incorporating the neuromodulation device as part of one’s body does not constitute anindividual event that takes place between oneself and the technology. The fusion of bodiesand SCS includes a human and non-human interaction, whether with one’s spouse, children,grandchildren, friends, or dog during daily walks (ibid.: 653). In that sense, the embodiedexperience of dis/ability resists all known definitions that limit it to a modernist distinctionbetween body and mind or body and sociomaterial environments. The definition of dis/ability in this context remains slippery, unfixed, porous, hybrid and flexible. What is inter-esting here is the continuous (re)configuration of a network of heterogeneous actors thatenable or disable the very idea of being human. Depending on the success of the SCS, itproduces the invisibility of a hybrid of human flesh with the material form of the technologyitself. Within the actor-network, the body becomes malleable matter, adaptable to whateverconditions the SCS affords. The new form of bodily identity created by adjustment to SCSdepends on, for example, how ‘bodies with SCS are also always intertwined with whatmatters as (putatively proper) humanness’ (ibid.: 654).

What STS proposes, then, is a theoretical vocabulary that conceptualises how bodies become and are made

dis/abled (cf. Moser 2006: 668) and it captures the somatechnical hybridity of everyday life. Thisdoes not mean that the corporal subject is seen either as a whole or as fragmented. The becomingof a body is a complex process of continuous configuration and tensions (Mol and Law 2004).With the help of STS conceptual tools, the analysis may redefine the notion of dis/ability on thebasis that ‘no single perspective is privileged above others’ (Mol 1999; Mol and Law 2004; Moser2009; Shildrick 2013), enabling it to trace connections between various practices and experi-ences, subject positions and actors that constitute dis/ability (cf. Latour 2005). This may providecritical analysis with tools that exceed the binary of inclusion or deviation and approach theconstitution of dis/ability through messy, polluted, experience-based, power-sensitive, episte-mologically vulnerable and ontologically diverse conceptualisations.

Take, for example, the proliferation of the ‘quantified self’ movement that greatly redefinescurrent human abilities. In this context, distinctions between humans and machines, as well as


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between subjects and objects are further blurred (Swan 2012). The notion of quantified selfnot only describes practices of monitoring and measuring aspects of a person’s daily life andembodiment in real time, it has also gathered cultural status (Lupton 2016). Elsewhere,Lupton (2013) claims that the extent to which these devices are incorporated in concepts ofidentity and embodiment also remains to be explored. In this context, rather than merelydeconstructing normative paradigms of bodily difference or identifying interactions betweenself-tracking technologies and the body, the analysis should focus on the different modes ofembodiments that arise and are performed simultaneously through these measurements andtheir interactions with other socio-digital spaces, such as social media. For example, in whatways do technologies invade the bodies and the everyday lives of their users? How do usersresist or see these applications as a means of empowerment that subverts normative under-standings of bodily morphology beyond discourses of inclusion or exclusion, ability anddisability? Such questions can be conceptualised by the combination of STS and (critical)disability studies, which offers a theoretical framework that approaches dis/ability as a processof becoming through a web of performative relations between diverse actors.

I will now turn to the politics of embodied technologies and the notion of the ‘technical’.Rather than taking technologies as black boxes or prosthetic enhancements, we must considertheir co-production with impaired bodies and the scripts and politics embedded in their design aswell as the realities they perform for people with disabilities.

Do assistive technologies have politics?

In her 2006 article ‘Trying Out the Wheelchair’, Myriam Winance argues that dis/ability isenacted by the very links that constitute it. Studying the co-configuration of wheelchairs andtheir users, she claims that subjectivity shaping starts with the trying-out period and ceaselesslycontinues in the process of adjustment (ibid.). This implies a lot of work and several mod-ifications of the boundaries between bodies and assistive technologies (such as applications tomeasure blood pressure, oxygen apparatus, telemedicine interfaces, modifications in privatehomes, lift systems, adjustable beds, and so on). However, who has a say in the design ofassistive technologies and for whom are they designed? Writing about assistive technologies (orwelfare technologies in a Danish context) Søsser Brodersen and Hanne Lindegaard (2014,2016) support the need for studies on the dilemma between assistive technologies inscribedwith user affordances and/or designed with the caregiver’s well-being in mind. Based on twonarratives arising from persons with disabilities, Brodersen and Lindegaard (2014) criticise theDanish welfare system for designing technologies that are not embedded in disabled people’severyday practices. Instead, the caregiver’s work environment appears to have become the focalpoint when designing homes for the disabled.

Brodersen and Lindegaard (2016) explain that the provision of assistive technologies by thewelfare state does not automatically mean that the artefacts become domesticated. The twonarratives illustrate that the adjustment process failed to integrate the needs and experiencesof the users. Elsewhere, the same researchers highlight the need for co-designing health caretechnologies with the users who will be affected by them. This process entails incorporatingthe experiences and feedback not only of end users, but also many other actors, such asrelatives, caregivers, and municipality and company staff in the design process. Conceptually,they propose the notion of self-care instead of health care, since the main purpose of assistivetechnologies should be to enable ‘the ability to care for oneself without medical, professional,or other assistance, or at least to decide for oneself when assistance from professionals orhealthcare technologies is needed’ (an emancipated subjectivity), rather than technologies


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improving people’s health (ibid.: 2). They conclude that the configuration of a self-caretechnology means that the person exhibits a strong sociomaterial relationship with the artefactregarding identity, experiences and values.

Assistive technologies should not merely help people to overcome environmental barriers.They should constitute artefacts embodying personal identities and abilities. Zarhin (2018)argues that further empirical research is needed to highlight the mechanisms through whichindividuals experience themselves as disabled through the use of assistive technologies.Following Ahmed (2004), she shows how relations between bodies and technologies, as well astheir narratives, produce emotions that both circulate and connect bodies to bodies. Specifi-cally, Zarhin problematises how the treatment for obstructive sleep apnoea (OSA), the con-tinuous positive airway pressure (CPAP) device, acts and interacts with users’ bodies, sleeppartners’ bodies, and cultural discourses to produce emotions and practices that define thesubjectivity of dis/ability. Disturbances and asynchronies occur when the CPAP devices andthe fleshly body interact, thus disrupting participants’ sleep and breathing. At the same time,participants in Zarhin’s study expressed their concern that the interference of the CPAP devicemay jeopardise the feeling of ‘togetherness’ in sleep and intimate relationships with their bedpartners. The study shows that individuals with OSA rely on the socially constructed andpreferred image of an able-bodied, independent, and attractive person who is able to sleepnormally without a CPAP device that changes their embodiment, making them into ‘depen-dent’ and ‘unattractive’ disabled individuals. The CPAP device interferes with the user’s body,the bed partner’s body, and cultural discourses to produce a specific kind of subjectivity – thatof a disabled or abled person. Dis/ability, explains Zarhin, is therefore an effect of a process ofinterrelations in a sociotechnical network (2018: 239).

I have argued above that the design of assistive technologies constitutes a site of con-troversy where different human actors (caregivers, designers, public servants and people withdisabilities themselves) attempt to ascribe various politics, demands, needs and interests tohealth care technologies. My account of STS case studies also shows that these technologiesare not neutral but perform realities and subjectivities for persons with disabilities. Theaccessible built environment and the identity of the attractive individual are effects performedby the interactions of human bodies and technologies. However, the question remains. Howare these kinds of effects rendered possible? How are the politics and design of assistivetechnologies mobilised? One way to answer this is to follow and debunk market logic.

Bodil Ravneberg analysed narratives about 11 disabled women and men using wheelchairs,hearing instruments and alarm devices to problematise the tension between public servicesand the market being patient-oriented, and individuals struggling to make assistive technol-ogies match their personal identities. The free market appears rather disconnected and slowregarding the matching of gender, age and lifestyle with aesthetics and design. Private com-panies, with welfare state tolerance, fail to address the needs and choices of women or youngmen in particular (Ravneberg 2009). Instead, within free market logic, disability serves as aprosthesis to support the public image of corporations, but at the same time people withdisabilities are negatively depicted as passive and in need of assistive technology or ‘fixing’.Tucker (2017) argues that tech companies in the United States exploit people with disabilitiesby using them as a marketing technique to promote their own social responsibility status.Such a discourse does not leave room for people with disabilities to intervene and promotetheir own needs and claims on the design of assistive technologies. Nevertheless, is marketlogic solely responsible for causing disabled people to be passive and/or scripting assistivetechnologies? The following section discusses the role of the state in configuring disabilitypolitics, the built environment and the dis/abled subject.


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Disability, biopolitics and the state

Aside from the market, the other pillar of modernity, the sovereign state, uses biopoliticalmechanisms to regulate life in organised societies. These mechanisms include regulatorytechnologies such as forecasts, statistical estimates and overall measures (Foucault 2003).According to Foucault (2003), at the start of twentieth century one of the main functionsof the sovereign state was public hygiene, with institutions to coordinate medical care,centralise power and normalise knowledge. The introduction of more subtle, more rationalmechanisms (such as insurance systems, individual/collective savings, and safety measures)constituted the biopolitical starting points for some of the state’s practices, and the first ofits domains of intervention, knowledge and power. State biopolitics derives its knowledgefrom the birth rate, the mortality rate and various disability classification systems. Throughits biopolitical functions, the state has become an obligatory passage point for dealing withdis/ability, with dis/ability as a political problem, as a problem that is both scientific andpolitical, as a biological problem, and as an issue of power (cf. Foucault 2003). In this way,the regulation of bodies is achieved through a regime that links self-subjection to societalregulation (Williams 2006; Turner 1997). One concrete example of state biopolitics is thatof disability classification systems. Disability classification systems belong to the core of thewelfare state’s biopolitical apparatus through which people with disabilities are assessed as towhether or not they qualify for disability benefits (Pavli 2017).

In her contribution to a special issue on STS and disability in the journal Science, Technologyand Human Values (Blume et al. 2014), Gaby Admon-Rick examines the role of disabilityclassification systems as an object of governance. Using concepts such as encoding and cal-culating, Admon-Rick (2014) highlights how classification systems defined dis/ability withinthe Israeli social security system in the 1950s. She argues that disability percentage encodingmakes a complex issue, such as the translation of a corporal impairment into a percentage,legible and simplified, and creates a standard for monitoring and record taking. At the sametime, these encoding devices establish state authorities as a centre of calculation, stabilising theroles of government and citizens. Moreover, disability classification systems enable the regis-tration of a population, transforming it into statistics. The welfare system is co-producedtogether with rational encoding and calculation methods, which enable both the replacementof bodily injury, function and stigma with a numerical code, and the production of a socialcategorisation of a group of people is defined according to their codes. Thus, the numericalmodels produced by bureaucratic assessments of bodily functions and dysfunctions becomeinstruments for the governance of disability, that is, biopolitical instruments.

On the same account, Antonia Pavli, in her PhD thesis entitled ‘Creative DisabilityClassification Systems: The Case of Greece, 1990–2015’, examines how a number of disabilityclassification systems succeeded each other, due to political instability and corruption over a 25-year period in Greece, creating biopolitical discontinuity and ‘misfits’. By historiographicallystudying these systems, Pavli (2017) poses the question: what happens to the case that does notfit? (Bowker and Star 1999). The continuous transition of classification systems is accompaniedby changes in definitions in terms of functionality and dependency but also in the provision ofassistive technologies. These alterations also redesign the map of allowances that constitutecertain categories of people with disabilities who do not meet the criteria for benefits. Herthesis shows in a detailed manner that the development of disability percentage encoding inGreece also involved the quantification of politics and the power of numbers that shape gov-ernance devices by simultaneously setting aside people with disabilities and their experiences,especially in times of economic crisis and financial austerity. In conclusion, Pavli stretches the


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importance of acknowledging the experience of relevant groups involved in the configurationof classification systems and their biopolitics. This is not merely the experience of bodilyimpairment, but how disability is defined in multiple fields such as in the scientific, policy, andadministrative realms (2017: 278). Thus, one issue for disability politics is central here: how candisability studies (with the help of STS) support and conceptualise the struggle of people withdisabilities so that they can take control of disability biopolitics and participate in, for example,the policymaking sphere and/or the design of (assistive) technologies?

To answer the above question, I will present an example of how biopolitics plays animportant role in enacting the dis/ability agenda in relation to the configuration of the builtenvironment. One case in point involves the welfare state mechanisms of public procurementfor large technical urban systems. My earlier work problematised the evolution of the Greekdisability movement through the lenses of the construction of a large technical system: theAthens Metro (Galis 2006). Initially, public servants and engineers involved in the Metroproject considered disability organisations to be politically weak and incompetent in terms oftechnical knowledge and therefore did not include disability organisations in the process.Instead, they glorified the value of scientific knowledge and expertise. The Greek disabilitymovement progressively gained political power through different forms of struggle. Initially,it claimed benefits and political participation in governmental institutions and later strove toparticipate in establishing knowledge and experience as a legitimate source for policy anddesign recommendations regarding the realisation of an inclusive Metro.

At the same time, the Greek nation-state attempted to subvert the disability agenda andexclude disability organisations from the design of the project. Each new move represents adifferent enactment of disability in everyday life, policy spaces and infrastructure, and amongpeople with disabilities, engineers and politicians (Galis 2006; Galis and Lee 2014). A usefulpoint for disability studies here is to consider abandoning conceptualisations of disabilitygroups as simply pressure groups, charity organisations, traditional voluntary and self-helpgroups, civil rights and anti-discrimination lobbyists, labour unions, and other organisations.We need to acknowledge the fact that disability groups have entered the arena of disabilitybiopolitics and appear before experts and make themselves credible co-speakers by becomingcompetent, by participating in conferences, and by dissecting research protocols and archi-tectural blueprints in order to obtain mastery of the technical and political vocabulary, and bytracing rehabilitation methods back to medical education (Galis 2011).

I argue that we cannot properly understand the configuration of (dis/abled) subjects withoutunderstanding their interactions with technoscience and state biopolitics. Moreover, my ambi-tion here is to translate this conceptual approach to dis/ability into an analytical metaphor for theconstruction of the subject in general. A concrete case is bordering practices. I propose to applythe notion of dis/ability as an analytical metaphor to explore how the human body becomesmigrant or how the migrant body becomes dis/abled in the process of crossing national borders.Borders constitute another form of applied biopolitics in terms of human subjectivity. Theyenable or disable mobility, citizenship and corporal integrity. Having discussed and refuted the‘human’ and the ‘technical’ and introduced a somatechnical approach to subjectivity, in this lastsection, I will experiment with the concept of dis/ability as a hermeneutical tool to account forborder biopolitics as a vector of dis/abling agency.

Dis/abling borders or the apheresis of the subject

The borderland is a somatechnical battlefield. Human bodies and technological artefacts, bothlow- and high-tech, are implicated and hybridised in a violent and often fatal tug of war that


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ends in either death or free mobility or something in between. Consider how complex borderingpractices and migrant subjects materially, politically and socially enact simultaneously (im)mobility,dis/ablement and (non-)citizenship. While I am aware that in general reversals do not work, I willcounter the Western separation of the body/technology through the metaphor of prosthesis byinserting its antonym in the analysis. In this sense, bordering practices may act here as apheresis. 2

Apheresis here refers to the gradual defeat and disabling of the subject through the bordering prac-tices. In this context, apheresis also refers to the deformation of citizenship and the displacement ofthe clandestine body through somatechnics in action: the amputation of identity (national, cultural,corporeal) by the enforcement of policing technologies in border crossing.

In that sense, we can approach bordering practices as an aphaeretic biopolitical apparatusthat dis/ables subjects. Disabled citizenship is the other side of enabling bordering practices.In that sense, dis/ability cannot be detached from the implementation of surveillance tech-nologies. I want to explore the ways in which this technological clash performs a new formof subject. Social analysis is in need of conceptual tools to monitor the deformation of thesubject and the shaping of apheresis through disabling bordering practices. The followingnarrative is from a 2005 article by journalist Theodore Georgakopoulos. The narration pointsto the raw co-production of border practices and disabled mobility:

My name is Gouma Dikoumana and I come from Burundi. I left my country to escapefrom the civil war. No one told me there were minefields on the Greek border. Thesame mine which blew my leg apart killed two of my friends. I wouldn’t have gone intothe minefield if there had been two metres of barbed wire and phosphorescent signs. Ithought it was just a field. My body is full of shrapnel. A doctor who got some of it outgave me a piece. On the bag it says: ‘Souvenir from Greece’. When we crossed theborder, the trafficker said: ‘Now you are in Greece and Good Luck’. ‘Go straight ahead’,he said ‘you will find the train lines’. Straight ahead was a fence which we thoughtencircled someone’s field. There were some signs attached to it, but we thought theywere for the train. I was third in the group to cross and I must have taken at most fivesteps from the fence when I heard a bang. Through the mist I saw a small flash where ourleader, a Tanzanian was and felt in the back of my head a sort of grabbing. I collapsed. Ifelt pain and it was too cold, so I lost my senses. When I woke up, I started to cry. Andthen to sing. (The gangrene there resulted in the loss of his foot).

(Esquire 2005)

The apheresis does not start with the amputation of Gouma’s leg. It has started already inBurundi with the forced displacement of Gouma, who has already lost his ethnic and classidentity by becoming an unknown injured body in the Greek-Turkish no man’s land.Gouma Dikoumana from Burundi, two metres tall with the shoulders of an athlete, claimsthat if he were standing in front of a nightclub, no one would dare to enter without hispermission. But now Gouma can only manage to walk 200 metres at most before having tosit down (ibid.). This is a corporeal subject that failed to resist the bordering apparatus andbecame disabled both in physical and social terms.

Gouma, two and a half years after the accident, still wears the prosthetic leg he wasthen given. ‘I can walk two or three hundred metres and then it starts to hurt’, hesays. But I can’t take off my leg in public. I am too embarrassed if people stare atme, it’s better if I suffer.

(Ibid)


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Gouma’s narrative embodies all kinds of amputations that his subjectivity goes throughduring his migration to Europe. When he left his country in order to escape civil war, hethought that his life could not get any worse. After a mine shattered his leg from the kneedown, Gouma now knows that his situation could get worse, because his corporeal disable-ment is followed by the regressive degeneration of his social status from an athlete to a ‘cripple’,from a Burundian to an ‘illegal immigrant’, from an affluent man to a ‘foreigner leach’, from acitizen to an anonymous digit in a statistical table of migration casualties/injuries. The aboveexample, I would suggest, is a clear description of how and why complex actor-networks ofmaterial and semiotic bordering processes enact subjectivities such as (im)mobility, dis/abilityand (non-)citizenship.

A final word

The film Upgrade explores a very interesting dynamic between humans and technology. Itportrays their relationship as symbiotic rather than as a struggle. The protagonist Grey doesnot act in a way that appears like a stilted robot impersonation, but he is not in full controleither. We get a realistic impression of two beings in one body. Similarly, this chapter haschallenged the binary body/technology approach to disability through the analytical lenses ofSTS and CDS. By presenting a historical account of the parallel paths followed by disabilitytheory and STS, I suggest that we should radically reconsider what we define as social andtechnical, and their distinctions. In that sense, dis/ability here refers to a harmonious or non-harmonious fusion of performing relations. On the one hand, the focus lies on the incessantperformances of the actor-networks of heterogeneous materials that enable or disable thevery idea of being human. On the other hand, we are also interested in the politics, ideas,interests and affordances inscribed in the technologies enacting the disability experience.Institutions such as the market and/or state biopolitics are important sources of dis/ablingagency through the production of rules and regulations, classification systems, and norms.

For the disability scholar, the biopolitics of disability implies that a theoretical and empirical‘upgrade’ is needed to conceptualise dis/ability as it is performed simultaneously in multiple set-tings: in everyday life, policy spaces, infrastructure, calculating devices, classification systems,design regulations, border crossing and among people with dis/abilities, academics, experts andpoliticians. Thus, disability studies could engage with current complex phenomena related to theshaping of the embodied subject in a heavily augmented reality in a way that enables us to tracethe interactions, the intertwinings that constitute the cyborg, the hybrid, the actor-network ofdis/ability, deviation, deformation, (non-)citizenship, displacement and apheresis. However,even if we keep all these factors in mind it is not certain that such an approach will allow us toanswer the question of whether the hero of Upgrade can really be innocent of murderscommitted by an entity with which he has a symbiotic relationship.

Notes

1 The term somatechnics constitutes ‘a critique of the mind/body split, and its associated distinction betweeninside and outside, and self and world, and instead turns its attention to the ways in which embodiment, i.e.the intervolvement of the world and the embodied subject, is shaped through the technologies, techniquesand technics of that world. It seeks to critically analyse the construction of the embodied subject through aconsideration of various technologies, from the ‘soft’ or invisibilised technologies of power, such as genderand sexuality, through the conscious techniques of discipline involved in performance or sport, through to‘hard’ technologies such as prosthetics, computers, surgeries and other medical interventions’. See https://somatechnics.wordpress.com/about-somatechnics/.


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https://somatechnics.wordpress.com/

https://somatechnics.wordpress.com/

2 Apheresis (Greek): In grammar, the omission of a letter or an unaccented syllable from the beginning ofa word. In medicine, the removal of anything noxious, or a large and injurious extraction of blood. Insurgery, it means amputation.

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PART V

Contextualising thedisability experience

30

FEMINISM AND DISABILITY

A cartography of multiplicity

Ana Bê

Introduction

This chapter aims to offer an introduction to the interdisciplinary field of feminist scholarshipand disability studies or, as Rosemarie Garland-Thomson termed it, feminist disability studies(2005, 2006). As I sit down to write this chapter, it is pleasing to note that this field hasexpanded and solidified immensely since the publication of the first edition of this Handbookin 2012. This chapter, therefore, intends to offer a brief overview of the field for peopleinterested in knowing more about feminist perspectives in disability studies. It is not, how-ever, meant to be an exhaustive and all-encompassing account of every contribution to thefield. My main goal is to demonstrate both the diversity and theoretical importance of thefield by pointing the reader towards key concepts, debates and authors.

Early contributions and debates

As the disabled people’s movement grew in importance throughout the later decades of thetwentieth century, contributions from activists and scholars interested in both feminism anddisability also began to take shape. In the 1980s a number of important publications appearedthat focused on disabled women’s lived experiences (Deegan and Brooks 1985; Asch andFine 1988; Driedger 1989; Morris 1989). Most of these earlier publications focused onbringing to light some of the issues that most affected disabled women by presenting casestudies and statistics showing that disabled women were often at a relative disadvantage toboth disabled men and non-disabled women, and that their specific issues and experiencesremained invisible. Likewise, they called our attention to the fact that disabled women foundit difficult to get their points of view acknowledged – both in the women’s movement andthe disabled people’s movement (Deegan and Brooks 1985; Asch and Fine 1988).

Furthermore, disabled women of this era also contended that disabled people could not beconsidered together as a single group since the issues faced by disabled women were oftendifferent from those faced by disabled men. Therefore, identifying and recognising thegender differences was seen as absolutely essential (Fine and Asch 1985: 9; Begum 1992: 72).

In addition, feminists within disability studies thoroughly challenged and deconstructedableist ideas within feminism. Ableism is a system of beliefs that privileges normate notions of

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the body/mind and ability that are culturally constructed and views disabled people as inferiorand lacking. It focuses on how society artificially constructs notions of normalcy. This argu-ment from feminists was a crucial step. They argued that the inability to include disabledwomen’s concerns was not due to some unexplainable lack of awareness about the existence ofdisability among women but was mostly due to common misconceptions, stereotypes and whatwould later be termed ableist ideas about disabled people in general (Asch and Fine 1988;Begum 1992; Morris 1996, 1991, 1989; Thomas 1999; Wendell 1996). They rightly arguedthat disabled women were often seen as childlike, needy and victims and that this fundamen-tally challenged the ideas about women that mainstream feminists wanted to put forward: thatwomen should be seen as competent, independent and capable (Asch and Fine 1988: 3–4).

These early writings were also important in demonstrating that new emancipatory modelsabout disability had been developed by disabled men and women themselves, and these reallychallenged traditional individual and medical models of disability. A notable example of thisis the social model of disability (Morris 1996, 1991, 1989; Thomas 1999; Wendell 1996).This new thinking exposed the ableist ideas and (mis)conceptions about ‘being disabled’ thatare deeply engraved in our culture and ways of being, as well as the difficulty in changingthem. Feminists would take their time to truly listen and, although there has been someprogress, the struggle to voice the perspectives of disabled women is still far from over.

Key concepts and debates in feminist disability studies

This section aims to introduce the reader to key concepts and debates developed from aframework of feminist disability studies.

Prejudice, care and interdependence

The last decade of the twentieth century was crucial for the disability movement, witha series of equal rights conquests achieved in some countries, and also the appearance of anumber of influential works in disability studies. It was also the decade that witnessed asudden increase in the number of publications by feminists working within disability studiesand, consequently, the amplification of debates and contributions in this area.

These feminist writers found it important to continue to focus on the lives of disabledwomen by bringing their experiential stories to light (Thomas 1999) and organising anthologiesof first-person narratives (Driedger and Gray 1992). Consequently, as more studies appearedduring this era of new ideas and models about disability, disabled feminists were better equip-ped to theorise dimensions of social life in novel and sophisticated emancipatory ways.

In her book, Pride against Prejudice, Jenny Morris explored in detail how disabled peopleexperienced prejudice and, indeed, how ideas and perceptions of disability are to a greatextent defined by the non-disabled world (1991: 37). The devaluing of disabled people’s livesand existence by the non-disabled world can also affect the value that disabled people ascribeto their own lives. This is exactly why, as Morris states, ‘We need to value our lives, and wealso must value the lives of other disabled people and refuse to make assumptions about thequality of life based on the nature of a particular disability’ (ibid.: 59). Moreover, Morrisargues, this devaluing of disabled people’s lives often leads to the widespread perception thatthese are ‘lives not worth living’ and that, therefore, they should be extinguished, forinstance, by preventing disabled people from being born in the first place, by defending theuse of euthanasia for disabled people, or by systematically persecuting, erasing and policingtheir lives and experiences. In its extreme, as Morris points out, this stance can lead to a

Feminism and disability

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policy of mass murder for disabled people, similarly to what happened in Nazi Germany inthe 1930s and early 1940s (Morris 1991, 51–8).

In the same book, Morris also analysed other aspects of the problematic relationship thatmainstream feminists had with disability. While Morris continuously pointed out the ways inwhich feminism had excluded disabled women and their issues from research and theoreticalagendas, she was also certain that she had ‘brought the perspective of feminism to an analysisof the experience of disability, using the principle of making the personal political as [her]primary analytical tool’ (1991: 9). This remains an important political point for feministswithin disability studies. The reason they felt it was important to point out both feminism’sableism and disability studies’ often gendered character was exactly because, being situated intwo different social locations as women and disabled people, they wanted and felt the needto draw from both feminist and disability studies’ frameworks in original conceptual moves.

For example, in Britain – where the social model of disability played a key role from the1970s – deconstructing traditional ideas about ‘care’ became both possible and essential. Theactivities of the disabled people’s movement and the Independent Living Movement laid thegroundwork for feminist thinkers in disability studies to redefine notions of dependency andcare (Morris 1993; Thomas 2007). It was argued that Western culture constructed disabledpeople as ‘passive’, ‘dependent’ and ‘in need of care’ – a position that immediately placedthem under the control of others. The point was that disabled women and men needed tohave control over their own lives, including making choices and gaining self-determinationin relation to accessing support and personal assistance, otherwise they would always beunder the control of other people (for instance institutional or informal carers) and would nothave the power to determine their own lives (Morris 1993). Disabled feminists contributed tothis debate by critiquing how some mainstream feminists accepted the normative construc-tions that ‘disability equals dependency’ and, thus, had unthinkingly made disabled and olderwomen invisible and/or ‘needy’ when they discussed the important role of (non-disabled)women as carers in society (Thomas 2007). Disabled feminists such as Jenny Morris (1993,1996) led this critique by referring to research she had conducted that demolished notionsthat disabled women were simply ‘burdens of care’ or mere ‘passive recipients of care’. Sheconcluded that ‘people who are commonly considered to be passive recipients of others’ helpcan also be “care-givers” themselves’ (Morris 1993: 89). Indeed, disabled women often hadcaring responsibilities of their own, and relationships that involved reciprocity were common(Morris 1993: 110; Thomas 2007).

More recently, feminists have helped to move this debate forward by contributing further tounderstandings of dependency, independence and interdependence (Slater 2015; Watson et al.2004; Kittay 1999). While most of our society’s ideas of independence are underpinned by thesuggestion that adults can and should be able to do everything for themselves, feminists in dis-ability studies have helped to challenge some of these assumptions. Debates in this area havehighlighted the fact that the concept of independence is predicated on the neoliberal ideal of‘doing everything for oneself’ which often seems to involve having a job and being able topurchase the products and services that you need. In addition, non-disabled people often navi-gate a world which is already tailor-made for their bodyminds and abilities (Price 2015). If theycan walk, stairs will not be an issue and if they have a neurotypical brain, going into noisybuildings and environments will not present a challenge. It is also often considered freeing,instead of problematic, that a non-disabled person is dependent on their car or a bus for regularjourneys.

In contrast, disabled people are considered needy, dependent and vulnerable because it isoften deemed that they need specific things that others do not. Therefore, if a disabled


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person needs to use a mobility aid, they may be described by others as being ‘wheelchairbound’ (a phrase that indicates a particular societal understanding of disability and depen-dency). However, non-disabled people are never deemed to be dependent on their mobilityaids such as cars or bicycles. They would also consider themselves independent if they areable to purchase a pint of milk, having little consideration for how many things would havehad to be in place and how many people would have had to be involved in order for thatpint of milk to be available at their favourite supermarket.

The idea of interdependence is, therefore, important to consider because it calls ourattention to how both disabled and non-disabled people rely on other people for theireveryday life in a range of different ways.

Rethinking impairment

The use of the old feminist maxim ‘the personal is political’ would profoundly influence thedebate in Britain during the 1990s about the role of impairment in the social model of dis-ability – a discussion that would deeply engage disabled feminists (French 1993; Crow 1996;Morris 1996; Meekosha 1998; Corker and French 1999; Thomas 1999). As the social modelslowly began to establish itself in Britain, it also came under some scrutiny from disabledpeople themselves. One of the major sites of contention was the debate about the experienceof impairment and the role of the body in the social model of disability. Disabled people’sorganisations such as the Union of the Physically Impaired Against Segregation (UPIAS) andproponents of the social model made a strong distinction between ‘impairment’ and ‘dis-ability’ in order to dissociate disability from the personal tragedy rhetoric of the individualmodel, and to place the focus more unambiguously on the disabling barriers that exclude andoppress in the social sphere (UPIAS 1976). For example, Michael Oliver clearly mentionsthat the social model does not deny the proximity of impairment to the body, adding that‘impairment is, in fact, nothing less than a description of the physical body’ (1996: 35). Tothe social model, disability is therefore about ‘all the things that impose restrictions ondisabled people; ranging from individual prejudice to institutional discrimination, from inac-cessible public buildings to unusable transport systems, from segregated education to exclud-ing work arrangements, and so on’ (ibid.: 33). The importance of placing the focus onsociety is that social organisation can be changed and adapted, and this can make a significantdifference to disabled people’s lives.

In terms of language use, the focus of the social model was different from the usage of‘people with disabilities’ in the United States and other countries, where academics andothers argued for the use of ‘people first’ terminology and the importance of placing theperson before the disability. However, for the social model, people do not have or carrydisabilities; instead, they have impairments and disability is the disadvantage that occurs whena disabled person has to navigate a society that does not take their needs into account.

Some disabled feminists argued that this strong impairment/disability distinction dismissedthe experience of impairment and the ‘body-felt’, the physical experience of embodiment,altogether. They argued that this division actually mirrored the classic patriarchal split thatmainstream feminists had challenged – the split between the public and private, whereby the‘private’ becomes a personal arena of no collective significance (Morris 1996; Crow 1996). Itis not entirely surprising, therefore, that disabled feminists felt the need to question this splitas replicated in disability studies: disability as public and impairment as private. While theyunderstood that talking about the experience of impairment held the danger of reinforcingnegative stereotypes about disabled people as ‘victims’ and ‘hostages’ of their bodies, they also


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realised that if disabled people do not reconceptualise their knowledge of the body andimpairment on their own terms, then that would always constitute a gap that the individualor medical model would eagerly claim and occupy. As Liz Crow eloquently puts it:

External disabling barriers may create social and economic disadvantages but oursubjective experience of our bodies is also an integral part of our everyday reality …

Recognizing the importance of impairment for us does not mean that we have totake on the non-disabled world’s ways of interpreting our experiences of our bodies.

(1996: 210)

Coming at it from a postmodern perspective, Mairian Corker and Sally French also con-tended that in the social model framework ‘disability and impairment are presented as adualism or dichotomy – one part of which (disability) tends to be valorised and the other part(impairment) marginalized or silenced’. As such, in the authors’ view, this framework fails ‘toconceptualize a mutually constitutive relationship between impairment and disability which isboth materially and discursively (socially) produced’ (1999: 2, 6).

Social model proponents initially responded by remaining firm in their belief that impair-ment had no role to play in a model that had always intended to focus on the social barriersthat cause disability rather than on the personal restrictions of impairment (Corker andFrench 1999: 38). However, there has been a shift in in the way that disabled people thinkabout themselves and perceive their bodyminds (Price 2011), especially in cultural contexts inwhich they have had access to other frameworks of conceptualising disability. This happens,for instance, in contexts in which the social model of disability or similar frameworks havecirculated in activist circles. On the other hand, disability arts have arguably played a majorrole in the process of redefining impairment by offering people other understandings of dis-ability and challenging the public about their views and perceptions (DaDaFest n.d.; SinsInvalid n.d.).

The debate about the social model’s main focus on external barriers and the recognition ofthe importance of impairment and impairment effects has continued in one form or anotheron both sides of the Atlantic. For instance, recently Alison Kafer has again questioned thisdivide, discussed in detail the fact that some impairment effects such as pain and tirednessreally do have an impact on people and their ability to function, and argued for a morerelational model of disability (2013: 7).

However, Bill Hughes argued that due to the debates offered to disability studies by disabledfeminists, poststructuralists and phenomenologists, the social model has now incorporatedimpairment and ‘the discourse that impairment is opposed to physical, cognitive and socialintegrity was exposed as a lie … the social model adjusted itself to contend with the dynamicof a politics of pride and the arrival of new waves of social theory’ (2014: 56).

Psycho-emotional disablism and impairment effects

On the basis of the earlier work of disabled feminists, scholars were encouraged to activelyconstruct ideas and proposals that could bridge conceptual gaps. It was in this context thatBritish feminist sociologist Carol Thomas formulated two essential concepts that remainimportant contributions. These were first developed in the context of Thomas’s study aboutthe lived experiences of disabled women in Britain (Thomas 1999). For example, Thomasargued that socially imposed restrictions that shape disabled people’s identity and subjectivity byworking along psychological and emotional pathways – what she termed the psycho-emotional


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dimensions of disablism – should be taken much more seriously by disability studies (ibid.: 46).Later on, Thomas developed this concept further:

[P]sycho-emotional disablism involves the intended or unintended ‘hurtful’ words andsocial actions of non-disabled people (parents, professionals, complete strangers, others)in inter-personal engagements with people with impairments. It also involves thecreation, placement and use of denigrating images of ‘people with impairments’ inpublic spaces by the non-disabled … The effects of psycho-emotional disablism areoften profound: the damage inflicted works along psychological and emotional path-ways, impacting negatively on self-esteem, personal confidence and ontological security.

(2007: 72)

This concept remains important in its recognition that the emotional lived experience ofdisabled people can be affected, and indeed harmed, by disablist attitudes and representations.

Another central and helpful concept coined by Thomas in this context has been that of‘impairment effects’ (2007, 1999, 2010). Thomas defines impairment effects as ‘the direct and

unavoidable impacts that impairments (physical, sensory, intellectual) have on individuals’embodied functioning in the social world. Impairments and impairment effects are alwaysbio-social in character, and may occur at any stage in the life course’ (2010: 37, emphasis inthe original). For Thomas, then, the biosocial nature of impairment effects is crucial sinceneither impairments nor their effects can be reduced to mere biology. They are both cor-poreal and social in nature. For instance, someone’s particular morphology – Thomas givesthe example of someone who is born missing a hand – has particular consequences for howthat person does certain things in the world, or what some might call certain restrictions ofactivity. However, if other people see a person who is missing a hand as being unfit to workor to carry out any other activity, or indeed if biomedicine labels this person as ‘abnormal’because having two hands is what is deemed normative in contemporary society, then thisexperience is always already immersed in the social and is thus never only biological.

Additionally, I would add, if we as a society come to embrace the multiverse-of-bodiesthat constitute human presence, stop being rigid about what parts of our bodies ‘should do’,and come to accept that people might be creative in the ways they use their bodies (forexample, drinking a glass of water can be done in very different ways by different people –

maybe by using just lips, elbows or feet instead of hands), then the experience of not havinga hand might be conceptualised in another way altogether. As Thomas mentions, it thenbecomes very evident that ‘the bio-material always intersects with the socio-cultural’ (2007:137). Given this, Thomas concludes that ‘The distinctions made between impairment anddisability (disablism) cannot … be mapped onto familiar biological/social or natural/culturaldualisms, nor should impairment be sidelined as an irrelevant category’ (ibid.).

In other words, by using an interrelational approach, Thomas does not really conceive of‘impairment’ and ‘disability’ as completely separate entities that have nothing to do with eachother, or that refer to completely different realms. Rather, she sees them both as inherentlyrelated and interconnected. Furthermore, she is adamant that they both have biosocialprocesses and factors involved and are not only biological or only social.

The importance of disabled identity

Scholars writing from a framework of feminism and disability have also offered key contributionsthat have sought to question common ideas about how we understand disability and identity.


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Susan Wendell’s work positions itself as an important philosophical contribution to disabilitystudies, even today, especially for anyone interested in knowing more about the field.

Wendell’s careful discussion of what may count as disability, the complexities of whoidentifies as disabled and who counts as disabled, remains fundamental. She reminds us thatdisability is often viewed from the outside as a taken for granted and stable category that isclearly recognisable. However, many people who may be perceived as disabled by othersmay not in fact identify as disabled – for example, members of the Deaf community, whoconsider themselves to be members of a linguistic minority. On the other hand, some peoplewho do consider themselves disabled are not identified as such by everyone else – forexample, people with ‘invisible’ impairments such as chronic illnesses. It therefore remainsessential to problematise notions of perceived dis/ability.

Wendell also argues that for many people living with certain impairments which are notimmediately associated with disability rights, such as chronic conditions, identifying as dis-abled might prove essential for two main reasons. First, identifying as disabled can haveimportant positive consequences for someone’s identity. People can feel that ‘they aremembers of a group of people who share the social oppression of disability and struggletogether against them’ (Wendell 1996: 25). Becoming politicised as a disabled person is,therefore, very important as it changes the meaning of the illness from something personal tosomething political. Second, it is vital to consider chronic illness within a disability rightsframework because socially accepted definitions of disability determine fundamental issuesincluding what kinds of impairments are recognised as ‘valid’ by society, friends and family,the workplace, and so on. These also determine what kinds of state support, benefits orreasonable adjustments are in place in a particular society and who has access to these.

Health, chronic illness and cure

As the previous argument suggests, Wendell’s work (1996, 2001), along with that of Thomas(1999), has also been instrumental in opening up the field by arguing for the inclusion ofchronic illnesses and other disabling conditions in the disabled people’s movement and in dis-ability studies. This particular theme has continued to be of interest to many feminists engagedwith disability, as can be seen, for instance, in the edited collection Dissonant Disabilities: Women

with Chronic Illnesses Explore Their Lives (Driedger and Owen 2008). While understanding theinitial desire to dissociate illness from disability because this might fuel ableist stereotypes of the‘totally incapacitated’ disabled person, Wendell calls for a more nuanced analysis that recognisesthat while some disabled people may be either well or very healthy, others may experienceillness and may therefore be exposed to particular forms of social oppression. Another impor-tant point to mention in this discussion is that even when people have impairments that aredue to illness, it does not mean that they are ‘globally incapacitated’; therefore, people still needaccess to reasonable adjustments which can support their well-being (Wendell 1996: 20). Myown research with people who have chronic conditions has demonstrated that their lives areaffected by a myriad of societal and cultural factors from lack of understanding from employersand family members to lack of access to state benefits and support. These factors mean thatpeople who live with chronic illnesses experience disablism on top of the bodymind effects thatthe illnesses themselves produce (Bê 2016).

Following from this point, I would argue that it is important for disability studies to continueto question rigid dualisms such as those of health and illness as being separate and mutuallyexclusive entities. It is important to present more fluid, interlacing and interdependent modelsthat focus on the importance of fostering a standard of well-being in the experience of illness


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and on questioning standard assumptions about what health is and how it is conceptualised(Bê 2016; Zola 1983).

Recently, work in feminist disability studies has also engaged critically with notions ofcure. Eli Clare’s (2017) book about cure problematises some key aspects of the way weunderstand cure in Western societies. This is a challenging concept as many people (includingdisabled people) would wish and fight for a cure. Thinking about cure in a critical way doesnot mean that cure has no role and is not important or welcomed. But it does mean pro-blematising the idealisation and putting a single focus on cure as the immediate solution toimpairment needs to be examined thoughtfully. One of the issues with a single focus on cureas the solution is that when organisations and charities are investing most of their money oncure, they disregard the political, social and cultural aspects that affect the lives of disabledpeople. For instance, while money is being invested solely on research for cure, this money isnot going to help to remove barriers for disabled people, to challenge damaging policies(such as the dismantling and systematic removal of state benefits in countries like the UnitedKingdom) or to create more forms of support and access for disabled people. Furthermore,the idea of cure is commonly associated with the idea of ‘overcoming’ disability, and thisnotion is deeply rooted in ableist ideas that see impairment as a personal misfortunate andplace the onus for change and adjustment on the individual, instead of on societal structures.

As Clare argues, the process of cure requires an individual to be identified as ‘defective’ inthe first place, and this, in turn, allows for hierarchies to be constructed and maintainedbecause ableism constructs some bodies as undesirable, broken and in need of cure, whileprioritising only certain kinds of bodies (2017: 23). As Kafer further argues, discussions aboutcure often assume that a ‘good’ future would mean the eradication of disability, but oneneeds to be careful to recognise the inherent ableism in such arguments (2013).

While these critiques are important, it is also essential to understand that for some peopleengaging with biomedicine is essential to their well-being. Many of us would not be able tofunction or at least to have a good standard of well-being without the intervention of biome-dicine. The key distinction that I make here explains the dual role that biomedicine has had asboth an institution of power and as an institution of healing. The history of institutionalisationand segregation in a country like the UK offers many examples of biomedicine as an institutionof power. Many disabled people have experienced unnecessary medical intervention – forinstance, Deaf people who are told they ought to have a cochlear implant because societydeems that speaking orally is the only acceptable form of communication. Other disabledchildren have been told they cannot attend mainstream school and are sent to segregatedschools instead because of the influence of medicine and allied professions. These are examplesof biomedicine working as an institution of power. However, biomedicine’s primary functionshould be as an institution of healing and, in this capacity, its mandate should be to work withpeople’s needs in mind and to generate a standard of well-being for everyone that needs it.

The body, biomedical power and embodied knowledge

Feminist disability studies has also made important contributions to our cultural and socialunderstanding of bodies. Influenced by postmodernism, the work of Janet Price and MargritShildrick is important in feminist disability studies, often challenging concepts that are takenfor granted, inviting us to move beyond modernist standards as well as to look at theimportance of reclaiming the ‘uncontrollable body’. Their work, as well as Shildrick’s ownindividual work, also offers important insights towards a critical understanding of the role ofthe disabled body, or anomalous embodiment, in society and how to conceptualise it as well


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as concerning critiques of bioethics in regard to issues that affect disabled people (Price andShildrick 1999; Shildrick and Price 1998; Shildrick 1997, 2015). Shildrick’s postmoderniststance allows her to offer powerful critiques of the way that modernity has defined andviewed disabled bodies and lives and the ways in which the disabled body ‘lays bare thepsycho-social imaginary that sustains modernist understandings of what it is to be a subject’(2009: 3).

While scholars and activists working in disability studies have always made strong critiquesof biomedicine and its view of disabled people, feminists specialising in disability studies haveextended these critiques one step forward. They have called our attention to the manyobstacles that both society and biomedicine have put in our way which prevent most disabledpeople from being able to understand or come to terms with impairment. One of these is theidea that the body can be controlled (Wendell 1996: 93). Both biomedicine and alternativetherapies favour the notion that the mind can fully control the body and consequently thatpeople are responsible for their illnesses and for ‘overcoming’ impairment – a set of beliefsthat minimises the societal barriers faced by disabled people and tends to ignore ways ofpreventing and removing them.

It is also important to mention Susan Wendell’s concept of ‘epistemic invalidation’ (1996:122). It highlights the way in which personal knowledges and experience of our bodies aresimply disregarded or even denied by biomedicine while scientifically produced discourses arethe only ones to be considered authoritative. Her analysis is a fundamental contribution tounderstanding the many ways in which biomedical power operates in disabled people’s lives.However, influenced by the feminist notion of standpoint, she argues that this particular loca-tion may invite a specific standpoint for disabled people stemming from disabled people’sunique and specific knowledges and accumulated experiences (ibid.: 73). In fact, I would addthat along the lines of the project of modernity, where only some knowledges are valued (mostnotably scientific knowledge) to the detriment of others, disabled people’s specific knowledgeshave been deemed unimportant or indeed non-existent and therefore do need to be recoveredand cast in a new light. Adopting standpoint theory can greatly aid this project.

This critique has led to important recent work in the area that tries to focus on knowledgeproduced by disabled people, or what Robert McRuer and Merri Johnson have called cripes-temologies (Johnson and McRuer 2014). This important project tries to recast disabled people’sknowledge in a new light and to give it the value it deserves.

Furthermore, authors such as Alison Kafer have also offered important discussions aboutnotions of crip time, a concept which allows us to consider more closely how regular notionsof time and temporality are questioned when considering disabled bodyminds (2013).

Diverse bodies of knowledge

This section aims to call the reader’s attention to the importance of diversification in thefield. While it is impossible to capture here all the contributions and ideas, it is essential topresent the reader with some examples of the immense and rich diversification in the field.

World-wide contributions

Disability studies is now a field which has expanded beyond its inception in Britain andNorth America. Significant contributions are now made by authors in all areas of the world.My goal here is to point the reader to some key contributors and collections that engagewith gender and disability across the globe.


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Helping to introduce readers to research in the Nordic countries, Gender and Disability

Research in the Nordic Countries is an exciting collection edited by Kristjana Kristiansen andRannveig Traustadóttir (2004) that applies a joint framework of gender and disability toNordic perspectives.

The collection of essays and personal reflections edited by Diane Driedger, Living the Edges:A Disabled Women’s Reader (2010) focuses on the Canadian experience and offers a variety ofperspectives written exclusively by disabled women.

Writing from an Indian perspective, the work of Anita Ghai (2002a, 2002b, 2006, 2018)weaves together disability studies, feminist theory and postcolonial theory to produce a crucialview of the struggles faced by disabled people in the global south as well as a fundamentaltheoretical contribution that is relevant for anyone interested in disability studies.

Karen Soldatic’s work is also of particular relevance here. She focuses on issues of gender,post-colonialism, indigeneity and the experiences of aboriginal disabled people in Australia.Readers might be particularly interested in some of the key edited collections that includeissues of gender, feminism and disability. These include Disability and Rurality: Identity, Gender

and Belonging (Soldatic and Johnson 2017), Disability in the Global South: The Critical Handbook

(Grech and Soldatic 2016) and Disability and Colonialism: (Dis)Encounters and Anxious Inter-

sectionalities (Soldatic and Grech 2016), which includes a section that focuses on issues ofgender and other intersectionalities.

Sonali Shah and Caroline Bradbury-Jones’ edited collection Disability, Gender and Violence

over the Life Course: Global Perspectives and Human Rights Approaches (2018) might also be ofinterest to readers.

Feminism and cultural disability studies

In the previous version of this chapter, I discussed how important contributions to feminismand disability had been made by authors who were situated in the larger field of humanities.This field has advanced significantly in recent years and is now more commonly known ascultural and literary disability studies.

The work of Rosemarie Garland-Thomson still stands out in this context because itoffered important early contributions and also due to its very explicit engagement withfeminist ideas. From the outset, Garland-Thomson’s project has been an important one. Inher book Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature

(1997), she explores the intricacies that allow for the construction of the disabled body inculture, and the role of medical, political, cultural and literary narratives in shaping anexclusionary discourse that constructs certain bodies as inferior. Her purpose was ‘to alter theterms and expand our understanding of the cultural construction of bodies and identity byreframing “disability” as another culture-bound, physically justified difference to consideralong with race, gender, class, ethnicity, and sexuality’ (Garland-Thomson 1997: 5).

By clearly placing disability alongside race, gender and sexuality in culture, Garland-Thomson is drawing our attention to the similar processes they may share when constructedas categories of ‘otherness’. She is equally addressing the fact that the disabled figure, or whatshe terms the extraordinary body, had been missing from the broad critical enquiry that hadallowed other cultural categories such as gender, race and sexuality to be destabilised to thepoint of implosion. Analysing the role of bodies in culture, and exactly how and why someare constructed as ‘inferior’ and ‘lacking’, the author reminds us that this is not due to someinherent physical characteristics but, rather, to the imposition of powerful social norms thatvalue and legitimise certain physical characteristics over others. In this particular work, as in


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her subsequent works, Garland-Thomson calls on the role of several cultural discourses in theconstruction of disability, and examines the exclusionary position of liberal individualism aswell as the role of representation in specific literary and cultural sites. As such, her work haseffectively reached the goal she first formulated in Extraordinary Bodies: to foster and create atrue place of presence for disability studies as a subfield of literary criticism and culturalstudies.

In Extraordinary Bodies, Garland-Thomson adds her voice to those of other feminists withindisability studies by wishing to bring their discussions to the attention of mainstream femin-isms and vice versa. She also reminds us that both female and disabled bodies have beenhistorically constructed as inferior and lacking, and that these are associations that must beacknowledged:

Many parallels exist between the social meanings attributed to female bodies andthose assigned to disabled bodies. Both the female and the disabled body are cast asdeviant and inferior; both are excluded from full participation in public as well aseconomic life; both are defined in opposition to a norm that is assumed to possessnatural physical superiority.

(1997: 19)

In this context, the author reminds us that such associations began as far back as Aristotle’sGeneration of Animals, in which the female is described as a deviation from the normate maleand as a ‘deformed male’ (ibid.: 19–20). This form of taxonomy, then, as the author pointsout:

initiates the discursive practice of marking what is deemed aberrant while concealingwhat is privileged behind an assertion of normalcy. This is perhaps the originaloperation of the logic that has become so familiar in discussions of gender, race, ordisability: male, white, or able-bodies superiority appears natural, undisputed, andunremarked, seemingly eclipsed by female, black, or disabled difference.

(Ibid.: 20)

One is thus, once again, reminded of the intricate ways in which the unmarked body (be itmale or white or able) is constructed only in regard to its fictional opposite – a process thatrequires contrast, hierarchy and exclusion.

Although Garland-Thomson finds a constructionist perspective helpful in understandingthe body as culturally constructed within social relations and in destigmatising the differenceswe have come to know as gender, race or disability, she also recognises that constructionismmay contribute to erasing the material and bodily effects of those differences and the socialcategories we claim to be important. In the case of disability this can still be problematicbecause, as she points out:

[A] disability politics cannot at this moment, however, afford to banish the categoryof disability according to the poststructuralist critique of identity … [W]hile in themovement toward equality, race and gender are generally accepted as differencesrather than deviances, disability is still most often seen as a bodily inadequacy or acatastrophe to be compensated for with pity or good will, rather than accommodatedby systemic changes based on civil rights.

(1997: 23)


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As a result, while the constructionist argument is helpful in addressing the fact that disability isnot a state of bodily insufficiency but rather comes into existence via the interaction of physicaldifference with the surrounding environment, it is also important to recognise that the materialexistence of the disabled body demands accommodation as well as recognition. As an inter-disciplinary area with much to contribute, Garland-Thomson also calls for disability studies tobecome a discourse that is recognised as ‘structuring a wide range of thought, language, andperception that might not be explicitly articulated as “disability”’ (ibid.: 2).

More recently, authors drawing from feminism and cultural disability studies have offered anumber of perspectives from engaging with new materialism (Garland-Thomson 2011) to offer-ing new readings of literary works and cultural representations (Hillsburg 2017; Rakes 2019).

Intersectional perspectives

In the previous version of this chapter, I focused on the importance of further developingintersectional work in disability studies; however, this is an area that has really expanded inrecent years and I want to mention just some key authors who have offered meaningfulcontributions.

Eli Clare’s work is once again of relevance here. In addition to the contributions mentionedearlier, his work also engages with a number of other key offerings such as discussions ofqueerness, transness and disability that offer both personal insights and important theoreticalcontributions (2015, 2017).

Equally, Nirmala Erevelles’ work focuses on the intersections of gender, race and disabilityand offers important insights through an intersectional lens (Erevelles and Minear 2010;Erevelles 2011).

Alison Kafer’s work also incorporates an intersectional lens by bringing queer studiesdebates on futurity to thinking about disability and working through a number of topicsranging from cure and intervention, to the cyborg, and to environmental justice (2013).

Possibilities and challenges

As both feminism and disability studies become more institutionalised and theoreticallysophisticated, I anticipate that there are three dangers that might present themselves. Thefirst one is that many emerging identities and marginalised communities and experiencesrun the risk of being dismissed and unaccounted for (or their experiential accounts con-sidered too ‘simplistic’) or at least that research will be done about those communities butnot necessarily by people from those communities. The second danger, arguably alreadyoccurring to certain strands of feminism, is that some contributions will become so overlytheoretical and arguably removed from the real world of everyday people that they willbecome inaccessible or irrelevant to disabled women and men outside of academia. Connec-tion to grassroots activism and relevance to local communities is vital for feminist disabilitystudies’ perspectives. Finally, there is also the danger that in a very ableist academic community(Brown and Leigh 2018), it will be mostly non-disabled academics who will be able to work inthe academy, be promoted and thrive. Although I am not questioning the place of non-disabledacademics in disability studies, the issue is whether they are willing to actively oppose ableistpractices and beliefs and support disabled academics and activists so that they can be part of andhold dialogues with academia.

At the same time, the intersection of these two areas continues to allow for an immensenumber of possibilities for exploration and this will continue to enrich the field.


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Conclusion

Currently, feminist disability studies is an extremely rich and diverse field that offers a varietyof perspectives and insights in a vast number of disciplines. Theories, concepts and debatesarising from this intersection have enriched not just disability studies but also feminism as afield. Although disability studies’ perspectives have been by no means embraced by all strandsof feminism yet, there has been much progress in this area and more recognition of the fieldand its perspectives exists. In some cultural contexts, disability perspectives have also started tobe embraced more by activist circles fighting for social justice in general. This a good indicationof the relevance of the field and its importance not just for disabled women but for everyoneinterested in issues of social justice and social change.

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31

DISABILITY AND SEXUALITY

Xanthe Hunt

Introduction

People with disabilities are subject to exclusion and discrimination. Much of this, the socialmodel of disability led us to recognise, is due to the non-disabled majority’s designing ofworlds which limit participation for individuals with impairments.

Sexuality is one area where we can recognise this model of exclusion at play: majoritysociety’s sentiments about, norms concerning, and strict notions of, sexuality, exclude peoplewith disabilities.

However, sexuality is also a realm of human experience in which embodiment is central.As such, exploring the experiences of sexuality of people with disabilities – as I will do in thischapter – involves engaging with some of the lived realities of both the social and physicalconsequences of bodily or mental impairment.

This chapter explicates that:

1 The attitudes of non-disabled people largely negate or pathologise the sexuality ofpeople with disabilities;

2 The experiences of sexuality of people with disabilities are hugely variable, but are atodds with the perceptions of non-disabled others (people with disabilities are sexualbeings, despite what some non-disabled people may think);

3 Some impairments do impose limitations on sexual participation, which are real andembodied and may be experienced as negative by people with disabilities;

4 However, the way in which impairments are experienced is socially mediated, and so,even in the case of functional limitations which are experienced at the level of theindividual, societal norms and myths about disability and sexuality heavily influence theexperiences of sexuality of people with disabilities.

Built around these pillars of argument will be a discussion of research concerning attitudestowards the sexuality of people with disabilities; experiences of sexuality of people with dis-abilities, and current issues and future predictions for sexuality research in disability.

The issues discussed in this chapter will be addressed in relation to the broad categories ofphysical, and intellectual, impairment. As will become apparent, the matters germane to

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disability and sexuality are often similar across impairment groups, but – in some cases – differdistinctively depending on an individual’s impairment. I devote a section to the specific dis-cussion of sensory impairments in order to highlight areas of divergence in experience, but thereader must note that much of the discussion of sexuality and disability broadly is relevant topeople with sensory impairments.

A note on theory

I begin with a note on theory, before moving on to a review of past empirical work.Sexuality involves the biological and the physical (Tolman and Diamond 2001), theerotic (Money 1981), the emotional, and the social (Simon 2017). Sexuality, like manybroad terms, is variously defined, its meaning depending greatly on the context in whichit is used. In the present enquiry, I define sexuality according to the definition ofTrieschmann (1988), supplemented by recent conceptualisations of sexuality informed bya rights perspective.

Trieschmann defines sexuality as:

the expression of a sex drive, through sex acts, within the context of the personalidentity of the individual: the maleness and femaleness of the individual that is soheavily influenced by past cultural learning, one’s self-image, and the expectationsthat others have of the person.

(1988: 159)

This is of utility as it makes central the importance of the person-environment interaction insexuality. Furthermore, it takes into account the role of culture, others and self-image indetermining – both in nature and expression – an individual’s sexuality. This is of particularrelevance to people with physical disabilities; for this group, sexual development and sexualexpression is often greatly influenced (and, perhaps, curtailed) by a disablist social environ-ment. The internalisation of this society’s norms and values may place constraints on theirsexuality. This definition of sexuality and its implications are, of course, in line with the socialmodel of disability.

However, Trieschmann’s (1988) definition of sexuality gives primacy to sex acts, and so isusefully buttressed by the World Health Organization’s (WHO 2006) broader, and moreinclusive, definition of sexuality. WHO defines sexuality as:

a central aspect of being human throughout life and encompasses gender identitiesand roles, sexual orientation, eroticism, pleasure, intimacy and reproduction …

influenced by the interaction of biological, psychological, social, economic, political,cultural, legal, historical, religious and spiritual factors.

(2006)

This definition places less emphasis on heteronormative performances of gender and sexualitythrough sex acts, and instead emphasises the numerous intersecting factors which influence anindividual’s conception of themselves as a sexual being, and their behaviour in relation to sexualthinking and feeling.

In a similar vein, WHO’s definition of sexual health (rather than sexuality) yields anecessary rights-based nuance to the above definitions. It defines sexual health as:

Disability and sexuality

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a state of physical, emotional, mental and social well-being in relation to sexuality; itis not merely the absence of disease, dysfunction or infirmity. Sexual health requiresa positive and respectful approach to sexuality and sexual relationships, as well as thepossibility of having pleasurable and safe sexual experiences, free of coercion,discrimination and violence.

(WHO 2006)

This, importantly, directs some of the attention, when thinking about sex, sexuality and sexualhealth and expression, away from sexual acts, and instead takes into account the ways in which anoppressive gendered or sexual climate (in this case towards people with disabilities) may impactsexual health.

This brings us to a second important question: how do we think about sexuality andunderstand it? Numerous fields, disciplines and schools of thought have turned their attentionto the study of human sexual sentiment and behaviour. Of most utility in application to mywork in this chapter, however, is a brief discussion of social theory which explains bothsocietal-level attitudes and individual-level ways of experiencing disability and sexuality (i.e.social constructionism). Social constructionism contributes a great deal of order to thinkingabout social phenomena, group behaviour and culture. However, the reach of the theoryextends into the intra-individual, explaining human thinking, feeling and behaviour as theinternalisation of culturally determined meanings and codes for interpreting reality and ourown internal world. According to this theory, no internal state can be purely natural, and isalways culturally modified (Armon-Jones 1986).

In the case of sexuality, which is grounded in biological drives and physiology, the mannerand form in which sexual understandings and behaviours emerge is imbued with socialmeaning, and is largely but not exclusively socially determined (DeLamater 1991). Cultureand context define what is, and is not, constitutive of sexuality, defining some behavioursand some relationships as sexual and others as platonic (Foucault 1977, 1990).

Background

Sexuality is constructed as something that is dependent on ability, vitality and conventionalstandards of beauty and performances of gender. Disability, on the other hand, is constructedas something which renders one weak, dependant and tragic or childlike (Hunt et al. 2018c;Shakespeare 1994). The societal discourses which surround disability and sexuality, then,discursively separate ‘normal’ sexuality from disability.

Language is reflective, and constitutive, of society, and so these ways of thinking aboutsexuality and disability both reflect society’s norms, values and proscriptions about sex, butalso delineate the possibilities for thinking about sexuality in people with disabilities.

The meanings attached to sexuality and disability by (majority, non-disabled) society and theattitudes of non-disabled people which these meanings result in have damaging consequences forpeople with disabilities. Against this backdrop of problematic attitudes, sexuality and sexualhealth have been addressed in disability scholarship for over 30 years (Lunsky et al. 2017).

In my review of the literature in the field below, I first briefly scan the attitudinal context,touching on both of these pervasive popular myths. I then turn to research which has deli-neated the consequences of the attitudinal and social environment for the sexuality of peoplewith disabilities. Finally, I examine the research which has looked at the lived experiences ofsexuality of people with disabilities, which – as we will see – are at odds with the perceptionsof prohibitions of non-disabled society.


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Research thus far

Attitudes as context

Kim (2011) notes that the term asexuality began to be stereotypically ascribed to people withphysical disabilities in the 1960s, and has endured since then as a way to denote theassumption that people with physical disabilities lack sexuality. Non-disabled members ofsociety have been found to view people with physical disabilities as asexual, or, at the veryleast, as less sexual than non-disabled people (Peta 2017; Peta et al. 2017).

Most researchers have found negative attitudes towards the sexuality of people with physicaldisabilities to be pervasive (Marini et al. 2011; Miller et al. 2009), and characterised by theperception that physical disability leads to a lack of sexuality (Hunt et al. 2017b; Hunt et al.2018b). People with physical disabilities are often not seen as ideal dating or marital partners(Hunt et al. 2017b; Marini et al. 2011). Investigators have also found that the attitudes of non-disabled people towards sexual behaviour among people with physical disabilities are marked bynegativity (Wolfe 1997). Beliefs about the unfitness of people with intellectual disabilities toprocreate and parent has a history which is long and tragic, and includes eugenic attitudes andpractices. People with intellectual disabilities were subject to forced sterilisations, and – inextreme instances – to extermination (such as during the height of eugenics in the late 19thand early 20th century, and in Nazi Germany) (Loeser et al. 2018). As Liddiard and Slater note,‘various forms of bodily containment have almost exclusively targeted the dangerousreproductivity of the disabled female through compulsory sterilization (historicallyenshrined in law), growth attenuation treatment, and forced contraceptive use’ (2018: 320).This is particularly the case for people with intellectual disabilities.

Contemporarily, at least in high-income countries, forced sterilisation of young womenwith intellectual disabilities is largely illegal and has decreased as a practice. Yet women withintellectual disabilities are still sometimes given long-term contraception, tantamount tosterilisation, without their consent (Kahonde et al. 2018; Roets 2007).

Despite the fact that these practices no longer endure in their institutionalised form, attitudestowards people with intellectual disabilities tend towards overprotection in most domains offunctioning, including sexuality. This stems from the perception of many non-disabled peoplethat people with intellectual disabilities are infantile, and – as such – in need of protection fromthemselves, and others (Robey 2006). They may also face the same host of paternalistic orotherwise problematic attitudes from non-disabled others to which people with physical dis-abilities are subject. These are not repeated here. Instead, this section will focus on the attitudesof caregivers and family members of people with intellectual disabilities. As many people withintellectual disability – more so than people with physical disabilities – reside in supportedaccommodation (Eastgate et al. 2012), or with family members, their sexual expression is verymuch determined by these types of others (Hall 2010).

When it comes to sexuality in particular, people with intellectual disabilities often faceresistance from non-disabled carers, including family members, when it comes to exerting theirsexual rights (Bernert 2011) and expressing sexual behaviour. Recent research suggests thatsome carers of people with intellectual disabilities, and also some members of the generalpublic, support the efforts of people with intellectual disabilities to engage in sexual expression,and recognise that individuals with intellectual disabilities have the right to healthy sexualrelationships (Eastgate et al. 2012). As Eastgate et al. noted, ‘attitudes have shifted from viewingpeople with intellectual disability as asexual “innocents” or “oversexed” potential sex offendersto recognition of their sexual needs and rights’ (ibid.). This contention is supported by other


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research (Kerbage and Richa 2011). However, although carers may recognise the rights ofpeople with intellectual disabilities, they may remain restrictive of the sexual expression ofpeople with intellectual disabilities when it comes to enacting those rights and pursuing sexualrelationships (Healy et al. 2009).

Even among the well-intentioned carers, efforts to support sexual behaviour in people withintellectual disabilities may be complicated. In a study by Eastgate et al. (2012) of carers ofpeople with intellectual disabilities, consent to sexual activity was described as a difficult process,and confidently understanding all parties’ wishes and desires during sexual activities, fraught.

Despite some parallels between attitudes towards the sexuality of persons with physical dis-abilities, and of persons with intellectual disabilities, there are notable differences. Discourses ofprotection and concern about abuse are more prevalent in scholarship concerning attitudestowards the sexuality of people with intellectual disabilities. Attitudes towards the sexuality ofpeople with physical disabilities, on the other hand, are marked by concerns about bodily dif-ference, and reflect – often in quite a pronounced way – the way that normativity is brought tobear on sexual life.

Yet for both groups non-disabled people’s attitudes play a substantial role in the lives ofpeople with disabilities, and – where negative – have detrimental consequences for peoplewith disabilities.

Consequences of disabling attitudinal environments

As framed by Shildrick (2009), people with disabilities, like all people, ‘come to know our-selves and others in the world [through] material engagement’ (2011: 25). For people withdisabilities, this material engagement – often with other human beings who hold problematicviews of disability – is a fraught process, in which the disabled subject is inscribed with a hostof meanings (Wade 2002).

Broadly stated, the negative societal thinking and feeling about, and representations of, thesexuality of people with disabilities outlined at the outset of this chapter have negative con-sequences for sexuality-related activities, attitudes, sexual self-esteem, sexual identity develop-ment, and quality of life (Bremer et al. 2010; Dune 2014). They can result in the lives of peoplewith disabilities being complicated by barriers in their sexual and personal relationships, obstaclesto maximising their sexual potential, and to accessing information about matters of sexuality(O’Dea et al. 2012). Furthermore, and perhaps most importantly, people with disabilities mayinternalise negative societal assumptions about, and attitudes towards, their sexuality (ibid.).

Having to negotiate one’s sexual identity in the light of cultural assumptions and prejudice is nomean feat (Dune 2014). People with physical disabilities are excluded from sexual health educa-tion (Cheausuwantavee 2002), and sexual and reproductive health care (Peta 2017), and theyexperience challenges to their sexual development (such as assaults on their sexual self-esteem).

The consequences of the attitudes of non-disabled others towards people with intellectualdisabilities entail a swathe of infringements and limitations on participation, similar to thoseexperienced by people with physical disabilities.

People with intellectual disabilities seldom receive the respectful treatment or functionalassistance which is needed to support their efforts towards sexual fulfilment (Ignagni et al.2016). Gomez (2012) notes that, aside from overprotective urges, there is also a largelyunacknowledged fear that if space is made for the contemplation of sexuality among peoplewith intellectual disabilities, then such people will be abused or become sex offenders. Here,we see that the obverse of overprotection – fear and control – is closely linked to reactions tointellectual disability.


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Because they are often overprotected from exposure to sexual knowledge, coupled withthe fact that there may be real limitations on their capacity to engage with information aboutsex and sexuality (Abbott 2013; Healy et al. 2009), people with intellectual disabilities arevery vulnerable to sexual abuse (Dickman 2018) and psychological abuse in the context ofintimate relationships (Eastgate et al. 2012). In fact, people with intellectual disabilities aremore likely than non-disabled members of the population to have had negative sexualexperiences (Reiter 2007; Eastgate et al. 2012).

People with intellectual disabilities also experience greater barriers to receiving sex educationthan people without disabilities (Schaafsma 2013), despite the existence of appropriate educa-tional programmes (Walker-Hirsch 2007; Hayashi et al. 2011). Due to a lack of education, butalso due to functional limitations on retaining information which is presented during sex edu-cation classes, sexual knowledge among people with intellectual disabilities is often poor (Eastgateet al. 2012; McCabe 1999). People with intellectual disabilities may often want to participate inintimate relationships, but face limited opportunities to doing so (Healy et al. 2009).

Individual experiences

Since the 1970s there has been a increase in work examining the lived experiences of peoplewith disabilities. A portion of this research – although small – is dedicated to understandingthese individuals’ sexuality. Here, it is worth exploring physical disability and intellectualdisability, separately.

Physical disability

When physical disability is acquired, and the individual’s sexual identity development hasalready occurred, pursuing sexual relationships, intimacy and pleasure remain priorities formany individuals of all ages (Fritz 2015; Higgins 2010). In contrast, sexual identity develop-ment in persons who have been disabled from birth occurs in the context of disability, andpeople with congenital physical disabilities have been found in some studies to be limited ordelayed in the expression of their sexuality (Vaughn 2015).

However, this is not necessarily the case, and likely reflects the influences of negativesocialization (being led to believe that sexuality is ‘not for them’) rather than any inherentlimitation in sexual desire. Indeed, there is some evidence that some people with physicaldisabilities develop, in their sexuality, sexual awareness and sexual expression at rates similarto those of their non-disabled peers.

Needless to say, there is extensive variation among individuals with physical disabilities interms of satisfaction with their sexual lives (Smith 2015). Yet a review of the literature on thesexuality of people with physical disabilities reveals that it can be active, and that their sexuallives can be lively and fulfilling (Guldin 2000; Ostrander 2009). It is necessary to state thishere not due to any implicit assumption that their sexuality be different; but simply toprovide evidence of the falseness of common assumptions.

Across cultures and countries, many people with physical disabilities want to be recognisedas sexual beings (Carew et al. 2017; Peta et al. 2017), as partners, and as potential parents(Nosek 2001). Specific evidence in refutation of the myth of asexuality among people withphysical disabilities include findings that they, like non-disabled persons, may identify across aspectrum of sexual orientations (Drummond 2014), partner and have relationships (Esmail2001), and have children (Lappeteläinen 2017).


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Still, there is some evidence that physical disability has been found to have a significantimpact on couples’ sexual relationships and on roles taken in those relationships, particularlyin the case where one partner assumes a caregiving role towards the partner with a disability(McKinney 2017). As Esmail et al. (2001) note, ‘it becomes more difficult for the couple toreturn to the pre-injury level of intimacy as the duration of a caregiver role lengthens’ (2001:14). When professional carers are employed, limitations on intimacy may arise (for a well-crafted autoethnography on the subject, see McKinney 2017). The presence of a disabilitycan also decrease the frequency of sexual activity, resulting in lower sexual satisfaction forboth partners (DeVivo 1996). All of these findings must be situated within an understandingthat all sexual relationships have complications and challenges. These data are included simpleto underscore the need for a sensitive consideration of the specific impacts – and possibilitiesof accommodations required due to – disability.

Generally, then, when it comes to sexual experience, people with physical disabilities havebeen found not only to enjoy rich and exciting sexual lives, but also to employ creative stra-tegies to overcome physical obstacles to sexual expression (Smith 2015). In an anthropologicalstudy, Guldin explored the ‘self-claiming of sexuality’ of persons with disabilities (this self-claiming, he defined as ‘how participants cognitively construct, intentionally express, andsensuously and emotionally experience their sexuality’ (2000: 234)). They concluded thatdominant cultural ideas related to sexuality, including the importance of physique and orgasmfor sexual ability, were challenged by individuals with disabilities. Although his participants didnot reject these cultural ideals, they placed more importance on other areas of sexuality andsexual activity, including the pleasure of their partner and their increased willingness to exploretheir own sexuality (ibid. 2000). People with physical disabilities, then, often express the desireto be recognised as sexual beings and experience a sustained – if not increased – desire forintimacy, even while sometimes acknowledging altered capacities for sexual pleasure.

Intellectual disability

As in the case of physical disability, most people with intellectual disabilities strive for, andwant, ‘autonomy, sex, secrets and desire in their lives’ (Hillier et al. 2002). However, in theirattempts to lead sexually fulfilling lives, people with intellectual disabilities come up againstnumerous barriers – perhaps more so than people with physical disabilities. This is the casebecause – as noted previously – people with intellectual disabilities are more likely to beunder the direct (and therefore watchful and possibly restrictive) care of another person.They may thus find it difficult to express their sexuality because of service barriers, includinginstitutionalised living or living under the care of family, lack of privacy, and lack ofknowledge about opportunities to express themselves and their sexual desires (Gomez 2012).

Research has shown that, although people with intellectual disabilities desire sexual lives,they are aware that their sexuality is not always approved of by others (Hillier et al. 2002). Inefforts to ‘pass’ as acceptable sexual citizens, people with intellectual disabilities may have toresort to self-surveying and to constantly having to ensure that they conform to gendernorms (Liddiard and Slater 2018).

However, limited knowledge of the body (due in no small part to inadequate or inacces-sible sexual education), sexuality and sexual expression, and exposure to prohibitive envir-onments do severely restrict people with intellectual disabilities’ access to opportunities tofulfil their sexual desires (Gomez 2012). People with intellectual disabilities do seem to knowless about sex and sexuality (McCabe 1999).


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In a comprehensive study by Healy et al. (2009), people with intellectual disabilities were foundto have experienced romantic relationships, and desired to pursue them. However, they demon-strated quite poor knowledge of masturbation, and young people felt that sexual intercourse wasprohibited in the places where they lived. Adults in the study understood what sexual intercoursewas, yet they held conservative beliefs about the appropriateness of sex as an activity (ibid.), pos-sibly echoing the messages which they had received about the appropriateness of sex receivedfrom carers.

Sex education had been received by most participants, and contraception was fairly wellunderstood. In another study, contraception use among women with intellectual disabilities hasshown that the contraceptive needs of young women with significant intellectual disabilitiescan be met easily (Palmer 1999). The extant literature which examines the experiences ofsexuality of people with intellectual disabilities, then, seems to reflect three realities:

1 People with intellectual disability often want to lead sexual lives, and have a desire forpartnership and intimacy;

2 Some people with intellectual disabilities show limited knowledge of sexuality and sexualpractices, and this has partly to do with functional limitations on retaining information, andpartly to do with the lack of appropriate information provided to people with intellectualdisabilities, and their exclusion from sexual society;

3 The accommodations that are required to make sexuality and sexual life accessible topeople with intellectual disabilities depend on the nature of the individual’s impairment,but are largely attainable, given thoughtful and considerate assistance from caregivers.

Yet despite the reality of need and the desire for assistance and freedom, the sexual rightsof people with intellectual disabilities continue to go unrealised.

A note on sensory impairments

As a rule, there is a dearth of information about the ways in which Deaf people might uniquelyexperience sexuality, sexual and reproductive health care (SRH) services, gender, and anynumber of other facets of sexuality for which there is more research in other impairmentgroups. Deaf people who identify as immersed in Deaf culture, or who are bicultural, havebeen suggested to have higher sexual self-esteem than individuals who have hearing impair-ments but who do not identify as Deaf, or who feel marginalised from Deaf culture (Willis2011). Yet the vast majority of academic explorations of Deafness in relation to sexuality havefocused on the need for appropriate sex education for Deaf children and teenagers, and ofmaking SRH services and resources accessible to Deaf people (Touko et al. 2010).

Although the experiences of hearing and visual impairments are not necessarily moreanalogous than between other impairment groups, it is worth discussing of the researchconcerning sexuality in people with visual impairments. A study by Pinquart and Pfeiffer(2012) was among the most thorough to examine, systematically, the differences in experi-ences of sexual development of individuals with and without visual impairments. They foundthat –similarly to adolescents with congenital physical disabilities – adolescents with visualimpairments were older when they first began dating. Interestingly, in their sample, theauthors found little between-group difference in the timing of first sexual intercourse, nor intheir perceived quality of their current romantic relationships.

In other research, sex education has taken centre stage, with authors emphasising the need toequip teachers to deliver SRH education to students with visual impairments, and the need for


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suitable curricula (Kelly et al. 2015). In a recent study of people with hearing, visual and phy-sical impairments, Retznik et al. (2017) compared experiences of romantic life across groups.The authors found that people with physical disabilities reported fewer relationships and latersexual debuts than people with visual or hearing impairments, and that participants with hear-ing impairments, or who identified as Deaf, had the most relationship experiences and theearliest sexual debuts (ibid.). It appears that for people with sensory impairments, some of thebarriers experienced by people with physical disabilities may not be as pervasive, or – simply –

that the cultural identifications of people who are Deaf, for instance, may provide opportunitiesfor unassisted coupling which are less available to people with physical disabilities.

As is apparent from the review of research discussed above, the sexuality of people withdisabilities is fundamentally influenced by the attitudes of others. Functional limitations onactivity do create certain barriers to participation, but these barriers are far greater than thelimitation itself, due to the structure of society, the attitudes of non-disabled others, and theway in which people with disabilities’ knowledge of the attitudinal and social context maylead them to feel in a certain way about themselves as sexual beings, and the possibilities fortheir sexual lives. This brings us, troublingly but neatly, to the concluding sections of thischapter: reflections on the challenging questions which transect disability and sexuality work;and a contemplation of directions for the future of the field.

Challenging questions

As is apparent, research on sexuality in the context of disability is marked by a number ofintersecting themes, many of which are characteristic of ongoing, seemingly intractable pro-blems with which the field must grapple. These problems are not problems of disability,but – almost unanimously – problems of society, and of non-disabled people’s reactions todisability, or neglect of it. In this section, I touch on some of these cross-cutting difficulties,before proposing some directions which the field is taking and may take, which wouldcontribute to the resolution of these problems.

Intellectual disability, rights and consent

People with intellectual disabilities have human rights, which – as this chapter has estab-lished – centrally include sexual rights. Advocacy groups, as well as caregivers, individuals,theorists and scholars, are devoted to upholding these, but – as this chapter has surely alsoestablished – doing so is not clear cut. According to the American Association on Intellectualand Developmental Disabilities, ‘The [sexual rights of people with intellectual disabilities]must be affirmed, defended, and respected’. But, other key disability documents, includingthe United Nations Convention on the Rights of Persons with Disabilities (CRPD), fore-ground protecting people with disabilities against abuse as central to social justice (UnitedNations General Assemby 2007).

Balancing sexual rights and protection for caregivers of people with intellectual disabilities,and exercising sexual rights in daily life for people with intellectual disabilities, are not alwaysstraightforward.

For the caregivers of people with intellectual disabilities, the stronger urge may be towardsprotection, particularly when the caregiver is a family member. Research has shown thatpeople with intellectual disabilities face resistance from family and carers when it comes toexerting their sexual rights (Bernert 2011). This is clearly a problem, and an infringement ofthe rights of people with intellectual disabilities to attain sexual freedom.


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However, people with intellectual disabilities’ capacity to consent to sex may be limited orvery difficult for another person to confidently assess. While laws on the subject are con-structed with protection against abuse in mind, they are often implemented with the effect ofstymying the sexual rights of people with intellectual disabilities (Eastgate et al. 2012).

Interestingly, a chapter by Dickman (2018) shows how the bar for sexual consent forpeople with intellectual disabilities may actually be set higher than for non-disabled people,thereby creating barriers to participation in sexual life for people with intellectual disabilities.For instance, in order for a person with an intellectual disability to be seen to have consentedto a sexual act they must be able to show knowledge of ‘reasonably foreseeable con-sequences’, yet many non-disabled individuals would, arguably, engage in sexual activity withlittle regard for, acknowledgement of, or even knowledge of, possible consequences (ibid.).

Legal consent issues restrict a person’s sexual expression and provide an excuse to dismisspeople who are able to give informed consent to sexual interaction (Gomez 2012). Providingindividually tailored sex education to people with an intellectual disability leads to direct andmeasurable improvements in their capacity to make decisions about sexual relationships(Healy et al. 2009).

Structural barriers and enabling environments

Structural barriers are very much interlinked with the attitudinal barriers encountered bypeople with disabilities. In fact, when the problematic attitudes are held by service providersat health care facilities, these can constitute structural barriers (if we take structural barriers tobe factors outside of the individual which influence their access).

As is apparent, a range of influences undermine service provision for people with dis-abilities, particularly sexual and reproductive health services (Eastgate et al. 2012). Aside fromthose which are attitudinal, people with disabilities also face barriers which are physical. Forinstance, people with disabilities report structural barriers to accessing sexual and reproductivehealth care (Nixon et al. 2014; Rohleder 2017), including HIV testing and counselling(Yousafzai et al. 2005; Rohleder 2017).

These physical barriers, as Rohleder (2017) notes, include inaccessible health facilities,information sheets which are not available in Braille or in sufficiently simple form, and lackof sign language services. These physical barriers to access – alongside physician attitudes –render health facilities unreachable, or even hostile, to people with disabilities.

While the CRPD and other key policy and advocacy documents lay the framework forthe sexual rights of people with disabilities to be realised, in low- and middle-incomecountries, or in contexts of poverty in high-income countries, efforts to uphold these rightsare thwarted (Morrison et al. 2014). This is particularly the case for women with disabilities,who are most at risk of rights abuses, and who are most likely to lack access to vital sexualand reproductive health services (MacLachlan and Swartz 2009), partly due to restrictedeconomic participation (Higgins 2010).

Future directions

Representational work

At the beginning of this chapter, I gestured to the idea that many of the problematic beliefsthat non-disabled people hold about the sexuality of people with disabilities stem from theproblematic ways in which disability is constructed in society. These troublesome


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constructions – of people with disabilities as tragic, dependant, passive, or dangerous – cir-culate in the popular consciousness in the form of myths, stereotypes and representationsabout people with disabilities.

Since the publication of landmark work by Rosemarie Garland-Thomson (2009), a greatdeal of work in disability studies has examined the ways in which these social representationsperpetuate problematic beliefs about people with disabilities. Describing these in detail isbeyond the scope of the present chapter. What I do note is that it is well established thatproblematic representations of people with disabilities contribute to the negative attitudes ofnon-disabled others towards them, and including in the realm of sexuality (Hunt et al. 2017b;Hunt 2018).

These problematic tropes include images of disabled people as asexual and childlike (Robey2006), dangerous (Shildrick 2009; Garland-Thomson 2009), ill (Reeve 2012), monstrous(Thomson 1996), freakish (Sandell 2013), or hero-like (Shakespeare 1994; Grue 2016).

Despite the tenacity with which problematic representational tropes about disabilityendure, in recent years there have been positive developments in disability representation. Infilm (Morrison 2012; Zablocki 2016) and photography (Enhance UK 2013; Frank 2014),people with physical disabilities are beginning to inhabit the visual realm in non-stereotypicalforms. This comes in two forms: so-called disability production, and mainstreamentertainment.

In disability-specific realms, disability film and art are making huge strides, as Zablockinoted in his Huffington Post reflection on the ReelAbilities Film Festival in New York, ‘Thelargest minority group in America is stepping into the spotlight with a record number offilms made by or about people with disabilities’ (2016: 1). The author also noted that ‘theedginess of topics and the forthrightness of their presentation’ struck the festival’s committeeand viewers alike. Among these edgy topics, sex and sexuality grew in prominence, bringingthis facet of living with a disability to the audience’s attention (ibid.).

However, the audience in question included, naturally, those individuals who had soughtout a disability film festival, and so perhaps were not the people most in need of exposureto such representations. This brings us to recent popular, or mainstream, representations ofdisability which depart from the problematic representational cannon. Morrison (2012),commenting on one film which attempted such a mainstreaming, discussed The Sessions, oneof the first Hollywood films to explore disability and sexuality. The film follows the real-lifestory of the American poet Mark O’Brien, who, at the age of 38 years, sought the help of asex surrogate. The film won the Special Jury Prize and the Audience Award at the Sundancefestival. Director Ben Lewin, himself a man with a physical disability like the film’s prota-gonist, stated that he ‘was taken by the frankness and explicitness of it – which is rarelyassociated with discussions of sex. When I was a kid, we didn’t talk about sex and disability. Iget the impression people are more open-minded now’ (ibid.: 1).

His comment cuts to the heart of an issue which such representations confront: given yearsand years of problematic representation, and the audience’s familiarity with problematic waysof reading disability in relation to sexuality, will such films (and photographic campaigns inthe same vein, see (Enhance UK 2013) open up a new way of viewing disability and sexuality, orwill they simply be read as freakish or pathetic?

As has been suggested in the past, however, in order to allow for new ways of seeing andreacting to disability (Hunt 2018b), we must move away from stereotypical ways of representingand viewing disability, and also depart from ‘the hierarchical double-bind of one and its ‘Other’,where one can only be ‘one’ or abject ‘Other’’ (Loeser et al. 2018).


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Assisted sex and the discourse of pleasure

Tepper (2000) discussed the way in which people with disabilities are routinely excludedfrom discourses of sexual pleasure. As these discourses become all the more prominent in themainstream, they remain unattended to in disability scholarship and activism. Meanwhile, inthe context of pleasure, disability continues not to feature in the mainstream. For reasonswhich include hegemonic notions about which selves are ‘fit’ to enjoy sex, disabled sexualitiesare seldom thought about in relation to pleasure (Thompson et al. 2001).

Despite the time lag between Tepper’s (2000) paper and the writing of this chapter,scholars are still lamenting the ongoing missing discourse of pleasure in studies of sexualityand disability (Loeser et al. 2018). Young people and adults with disabilities are not involvedin discussions that concern sex as something that should be enjoyable, and sexual educationfor people with disabilities seldom focuses on pleasure, unlike contemporary constructions ofsex among non-disabled people (Kahonde et al. 2018).

One result of this absence of the pleasure of people with disabilities in the public imagin-ing, is that the pragmatic needs of some people with disabilities for assistance in achievingsexual pleasure are largely ignored. Despite calls for sexual assistance to be included amongservices for people with disabilities, few countries have achieved this (Loeser et al. 2018).

In Loneliness and its Opposites, Kulick and Rydström (2015) explore the differencesbetween Denmark and Sweden – two liberal welfare states – in their reactions to the sexualassistance needs of people with disabilities. Their book shows how in Denmark, welfareworkers’ willingness to tolerate the ambiguity, risk and possible discomfort entailed in facil-itating sex has far-reaching, positive consequences for social justice in the country. Yet, inSweden, where welfare workers and the state alike shy away from possible risk and fear ofabuse, the sexual lives of people with disabilities are denied and obstructed.

As noted in the foregoing sections, supporting safe, constructive sexual relationships anderotic activities for people with disabilities can be complicated, particularly for caregivers ofpeople with intellectual disabilities (Eastgate et al. 2012). Furthermore, in low- and middle-income countries, where the majority of care for people with disabilities is given by familymembers rather than by professional carers, facilitating relationships and sexual activitiesmight become all the more complicated.

The trend lag in low- and middle-income countries

Quartz, in 2017, published a review of trends and changes that have taken place over time inthe field of sex and sexuality research (Foley 2017). Not only was disability not mentioned atall in the review, but – quite strikingly – the trends that Quartz reported on are only nowbeginning to characterise disability research outside of the global north. In the global south,there appears to be a trend lag (although notable exceptions exist, and in some areas disabilityresearch is offering insights which lead to a re-visioning of mainstream sexuality work).

Quartz is not an academic publication, and its methods of analysis are not entirely clear,but the broader fact to which it points remains true: trends in the mainstream of sex researchand – importantly – practice are intermittently incorporated into disability and sexualitywork, except in the global north. Most of the reason for this state of affairs, as I have notedbefore (Hunt 2018), is that disability and sexuality research as a whole began later thanmainstream research into sexuality (the sexualities of people with different embodiments, forinstance, have been neglected from mainstream conceptions of sexuality).


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Disability work in the global south that examined sexuality began even later. Within disabilitystudies, between northern and southern research, there are differences: in southern contexts, wemay be tempered in our enthusiasm for more complex and nuanced work around creativeexpressions of embodiment, say (although this work is important), because the environment issuch that we are constantly reminded of the importance of issues of access, basic rights andresources. Being grounded, as work from the global south is, in recognising the importance ofthese ‘basic issues’, is an immense strength of work from the southern scholars.

Nonetheless, there is a need for global southern disability work to also attend to emergingtrends in sexuality work in nuanced, sensitive and critical ways. This is already happening to acertain extent, and research on queer perspectives and LGBTQIA+ issues, as well as otherintersectional and identity work, is being carried out in the global south (Chappell 2017), butmuch more needs to be done to mainstream the conclusions drawn by this work, and to quantifythe implications it has for the populations studied, and service provision more generally.

Attention to enabling environments and structural barriers

We know from the work of people like Don Kulick and Jens Rydström (2015), mentionedabove, what a difference enabling environments can make to an individual’s lived experi-ences. Broader ecological environments – at the level of policy, of legislation and of serviceprovision, for instance – can create, or prevent, opportunities for people with disabilities tothrive and to be included. Enabling environments are those which create such opportunities.

The policy environment (the CRPD, for example) is already in place, but we need moreformalised support, as well as action plans, co-ordinated multisectoral efforts, evidence forprogramming, and integration with key touch points for people with disabilities.

Conclusion

In a recent commentary for the Journal of Medical Ethics, Liberman (2018) argued that disability isnot necessarily a proxy for sexual exclusion. She wrote that

disability status is neither necessary nor sufficient for being sexually excluded andproposals about how to fulfil the sexual interests of all and only disabled people missthe mark. Instead of focusing narrowly on how to meet the sexual interests or satisfythe sexual rights of disabled individuals, we should investigate whether and how tomitigate the harms of sexual exclusion more generally.

(Ibid. 253)

I think it is possible to make two concluding points in relation to Liberman’s (2018) statement. Itis worth noting that she does not appear to be a disability expert, nor that the paper was widelytaken up, but – rather – her statement offers some catching points on which to hang the con-clusions of this piece.

First, it is sadly but markedly apparent that for almost all populations with whom researchhas been done disability does equate to sexual exclusion. Almost all inquiry into the sexuallives of people with disabilities has revealed some exclusion to have taken place or to betaking place, and research into the attitudes of non-disabled people towards the sexuality ofpeople with disabilities reveals exclusionary attitudes.

Second, although not entirely in line with what Liberman (2018) intended when makingthis comment, the idea of examining variation in exclusion (there is variability, and some


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people with disabilities are less excluded than others), is interesting. More instructive fordisability, however, would not be Liberman’s emphasis on sexual exclusion generally, butrather a broader focus on how and why and at which intersections of identity this sexualexclusion is most pervasive for people with disabilities (ibid.). Doing so would allow us tobetter understand the roots of exclusion and prejudice, and better engineer solutions whichwork for people with disabilities, and are sustainable and meaningful.

Finally, it is apparent that there is more than exclusion at stake in the lives of people withdisabilities when it comes to sexuality: opportunities for activism, research and meaningfulengagement on the topic of sexuality and disability could benefit from a broadening of foci,and a particular focus on attitude and structural change.

Some of the material in this chapter is drawn from the author, published PhD Dissertation‘Through a different lens: Examining commonality and divergence in constructions anddepictions of the sexuality of people with physical disabilities in South Africa’ at StellenboschUniversity, for which the University is the copyright holder. The author has receivedpermission from this institution to reprint some sections of this work for the present chapter.

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32

RACE/ETHNICITY ANDDISABILITY STUDIES

Towards an explicitly intersectional approach1

Deborah Stienstra

The late Chris Bell, disability studies scholar, challenged disability studies to be more con-sciously reflective (and reflexive) about race and ethnicity, and specifically its whiteness(2010). In this chapter, I take up his challenge and identify themes in the existing literature aswell as the tools, including both storytelling and intersectional analysis, which may help thisprocess of reflection.

Chris and I shared a space at the 2009 Canadian Disability Studies Association meetings. Ispoke on the theme of ‘Canadian multiculturalism and the space for disability culture’. Hewas the respondent. We were a mixed bag, each reflecting our lived and intellectualexperiences. I am racialised white, perceived by many to be a non-immigrant Canadian(although I am a first generation Dutch immigrant), a political scientist by training – with astrong feminist analysis – and someone who has come to thinking about race and ethnicitybecause of my commitments to intersectional analysis. I framed stories about inherent racismand ableism in Canadian immigration policies as a way of uncovering and disrupting themyths and narratives of Canadian multiculturalism and inclusion. Chris was racialised black,an American, and well versed in narrative analysis. His response was eloquent and repletewith probing questions and demanding insights. I was challenged to think and respond. Inthis chapter, I continue that conversation with Chris, despite his absence, and respond to hischallenge to uncover and go beyond the whiteness of disability studies.

Where have we been on race/ethnicity and disability?

In 2002, for a Canadian government-sponsored seminar on intersections of diversity, Ideveloped a literature review on the intersection of certain identity markers, specifically race/ethnicity, heritage language and religion, with disability. At that time I argued:

It could be appropriate to do an analysis of disability and these identity markers,including those within dominant racial/ethnic groups such as white, Anglo-SaxonCanadians with disabilities. Yet most of the literature on disability fails to be thatself-conscious about race and ethnicity. For the most part, when we consider race

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and ethnicity we find research about those in subordinated or minority groupswithin society.

(Stienstra 2002: 5)

Much of the literature that addresses both race/ethnicity and disability comes from theUnited States and addresses the situations of African Americans with disabilities.

Furthermore, I noted that the literature about race/ethnicity and disability mirrors the faultlines of disability research identified by Simi Linton (1998). ‘The research is found almostexclusively in applied fields, especially rehabilitation, special education and social work.Much of the research isolates and seeks to treat the individual with impairments rather thanaddressing the broad context that creates disability’ (Stienstra 2002: 3).

In terms of service provision to people with disabilities in minority cultural groups, thestudies in my review are

primarily by professionals, including some organizations, who recognize the culturaldiversity among their clients and want to address cultural differences appropriately.They suggest that there is an underutilization of services related to disability by thosefrom racial/ethnic minority backgrounds as a result of communication barriers,(negative) perceptions about the causes of disability and the inaccessibility andincompatibility of the mainstream service system for these people.

(Stienstra 2002: 8–9)

Two studies, one Canadian and one British, which adopted participatory research and thesocial model of disability, have also illustrated this fault line around service provision.

[T]hey [the researchers] all seek to provide better services and better recognition ofthe particular concerns of ethno-racial people with disabilities … by building linkswith the families in the context of their own communities, it is likely the servicesthat are provided will be seen more as ‘insider’ services (or community-based ser-vices), rather than those provided by ‘outsiders’ to the community.

(Ibid.: 10)

From these findings, the literature review highlighted several gaps and areas for future work.

[R]esearch related to disability should focus on the social, political and economiccontexts of how impairment changes into disability. Less attention should be paid tohow to provide better ‘culturally competent’ services, and more paid to what causesthe inequities that result in the need for differing services, or services at all.

We also need to develop research that originates from the communities of those whoexperience the intersections between race/ethnicity/heritage languages/religion anddisability. We need to use methods that allow their voices to be heard authentically,and develop research programs together with these communities in ways that willbenefit them.

For those who are studying majority communities, or are making broad statementsabout the lives of people with disabilities, we need to be more self-conscious aboutthe generalizations we make about affected communities. Our research needs toreflect the limitations within which we gathered our data, and needs to be clear aboutthe extent of commentary we can make with those limitations.

Race/ethnicity and disability studies

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Much more research is needed to develop our understanding of the different per-spectives and inequalities people of colour with disabilities face, immigrants with dis-abilities face and Aboriginal people with disabilities face. We know little about theirexperiences of racism as it intersects with their experiences of ableism. The intersectionsof race/ethnicity and disability, however, are not only found among ethno-racialpeople with disabilities, they also intersect for people who provide support or services.

So much research is needed that it is impossible to prioritize, except to return tothe need for research to recognize the full participation of ethno-racial people withdisabilities and their communities in the research process, from their vantage point,recognizing and valuing their expertise and addressing their benefit. This will createrich, credible and reliable research that speaks to the inequalities that shape the livesof ethno-racial people with disabilities.

(Ibid.: 20–2)

While many of the fault lines still exist almost ten years later, there has been an increase inthe number of qualitative and narrative accounts of the experiences of people with disabilitiesfrom minority ethno-racial backgrounds. Despite that increasing wealth, the reflexivityaround whiteness that Chris Bell invited has yet to emerge. In the subsequent sections, I willbriefly illustrate the fault lines and what they demonstrate. From there I will discuss howintersectional and narrative analyses provide tools to bring forward the stories and experiencesof those rendered invisible. In doing so, as Parin Dossa suggests:

Persons from marginalized social locations bring into relief the fault lines of the systemand suggest avenues for change. What they have to say both in the way of experientialknowledge and subsequent reflection – embedded in storytelling – is of value to thelarger society…margins engage with the centre and in the process shift its pivotal points.

(2009: 5)

Culture, disability and service provision

One of the continuing fault lines in the literature around race/ethnicity and disability isrelated to how culture and race/ethnicity are addressed in service delivery to people withdisabilities. There continues to be significant literature in this area primarily focusing onspecial education, learning disabilities, mental health services and rehabilitation. Recent lit-erature on racial/ethnic minority people with disabilities and service provision echoes earlierwork calling for culturally competent service delivery. While there is some modest recogni-tion of the effect of the race/ethnicity of service providers as well as service recipients, mostof the literature continues to address minority culture or race/ethnicity without reflecting onmajority culture. Furthermore, in this literature, disability is often presented as uncontestedand embedded exclusively in people’s bodies. In the quantitative data analysis, disability andimpairment are presented as identical. Disability is rarely understood as an interactionbetween an individual’s impairments and barriers in the environment, or included as a cultureto be addressed through culturally competent services.

How does this theme emerge?

Attention to culture and disability in the context of service provision has come about largelybecause of identified gaps in the presence and effects of impairment and access to servicesbetween white and non-white people with disabilities, predominantly in the United States.2


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This significant literature identifies several themes, largely drawing from US quantitativedata. There are racial disparities in disability framed in comparison to the situations of white orCaucasian Americans,3 including more disability in the activities of daily living among AfricanAmericans and Spanish-speaking Hispanic Americans (Dunlop et al. 2007); earlier onset of dis-ability among African Americans (Taylor 2008; Resnik and Allen 2006); a quicker decline infunctioning (Thorpe et al. 2009); poorer adaptation to impairments in African American elders(McKinzie et al. 2007); and later or no diagnosis among African American and Hispanic chil-dren (Mandell et al. 2009). Some racial gaps in disability are attributed to access to health care inthe United States as well as socio-economic status (Taylor 2008; Fuller-Thomson et al. 2009)and as such begin to shift the focus from race/ethnicity as physical or biological characteristicsto the social and economic inequalities that can create disadvantage.

Racial disparities also exist among those people with disabilities accessing services, includingvocational rehabilitation (Arang-Lasprilla et al. 2009; Cavenaugh et al. 2006) and mental healthservices (Omar et al. 2009), with some evidence that these differences are also linked to socio-economic status (Fulda et al. 2009; Dunlop et al. 2007). In research related to American Indian(Aboriginal or indigenous) populations, Mays et al. suggest: ‘Racial/ethnic minority disparitiesin mental health can emerge from a lack of culture-specific and in-depth understanding of theissues involved in the constellation of precipitating causes, appropriate diagnostics, and culturallyappropriate treatment and intervention’ (2009: 77). In the United Kingdom, people from someblack and minority ethnic groups are three times more likely than average to be admitted asmental health patients (Allen 2008) and there are significantly lower rates of service utilisationamong South Asian children with intellectual disability compared with white British childrenwith intellectual disabilities (Dura-Vila and Hodes 2009). Racial disparities are evident in therates of employment for people with disabilities, with lower rates among racial minorities in theUS (Krause et al. 2009; Hasnain and Balcazar 2009).

In the United States, there are disproportionately more people with disabilities fromminority cultures than majority cultures in special education (Powell 2010; Blanchett 2009;Beratan 2008; Harry and Klingner 2006). Artiles et al. suggest that

students from historically underserved groups are and have been disproportionatelyplaced in special education. We use the terms historically underserved groups todescribe ‘students from diverse racial, cultural, linguistic and economically dis-advantaged backgrounds who have experienced sustained school failure over time’.

(2010: 279–280)

Oesterreich and Knight (2008) argue that this over-representation in special education hasimplications for the possibility and success of these students in college education. Blanchett etal. indicate that African American students who have been identified as having a develop-mental disability face a complex set of barriers to equitable education, including

institutionalized racism, White privilege, and an increased risk for being identified ashaving developmental disabilities not because being African American or of colorresults in a disability but instead due to being more likely to live in poverty, receiveinadequate prenatal care, and have limited access to early intervention services.

(2009: 392)

Much of the research on racial disparities and disability also suggests that programmes specificto language or cultural groups may lower racial/ethnic disparities (Arang-Lasprilla et al. 2009;


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Krause et al. 2009; Allen 2008; Dunlop et al. 2007; Cavenaugh et al. 2006). It is not sur-prising from this analysis of the gaps that the solution is to provide more culturally relevantand sensitive services, rather than to address the reasons for the inequalities.

Culturally sensitive or competent service provision

To address the gap in services for people with disabilities from minority racial/ethnic back-grounds, as well as service provision for minority populations without disabilities, many serviceproviders refer to culturally sensitive or culturally competent services.

Cultural sensitivity is knowing that cultural differences and similarities exist, withoutvalue judgment. Cultural competence refers to the ability to work effectively withindividuals from different cultural and ethnic backgrounds, or in settings where severalcultures co-exist. It includes the ability to understand the language, culture and beha-viours of other individuals and groups, and to make appropriate recommendations.

(Raghavan 2009: 17)

Others echo the importance of culturally competent services that can address many of thebarriers faced by people with disabilities from minority backgrounds.

[C]ulturally and linguistically responsive services are those services that recognize,value, and infuse individuals of color with developmental disabilities’ ethnic, cultural,and linguistic knowledge to inform pedagogical and service delivery practices and toemploy that knowledge to design instructional strategies, communication strategies,assessment tools, and service delivery models. Service providers who provide culturallyand linguistically relevant services acknowledge that the American special educationsystem is grounded in American macrocultural values concerning communication andlanguage, and as such, it disproportionately favors parents for whom English is theirfirst language and those who speak and comprehend the ‘official’ language.

(Blanchett et al. 2009: 403)

Some suggest that without a cultural immersion, providing culturally competent services isimpossible. Reflexivity and cultural awareness can lead people to engage in cultural humility,that is, ‘having a lifelong commitment to self-evaluation and self-critique in the service ofredressing power imbalances’ (Mays et al. 2009: 79).

Others critique culturally competent service approaches for their lack of attention to thecultural or identity elements of disability in addition to race/ethnicity. For example, Light-foot and Williams suggest that in domestic violence programmes cultural competence wasrequired in terms of race and ethnicity, but ‘that the notion of cultural competency rarelywas expanded to include disability … Another strong theme was that cultural competence indomestic violence service providers rarely extended to include disability or Deaf culture’(2009a: 147–148). Mpofu and Harley (2006) suggest that people of colour with disabilitieshave unique career counselling needs because they have identities both as people of colourand as people with disabilities.

Finally, a small part of the literature in this area is beginning to recognise that the significance ofrace/ethnicity and culture is not simply for service recipients and those in minority populations,but that it shapes everyone, including majority culture service providers and their organisations.Raghavan eloquently makes the case that all humans have ethnic identities:


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[O]ur ethnic identity plays an important role in terms of our beliefs, attitudes andbehaviours. All human beings have an ethnic identity, but often when we talk aboutethnicity or cultural diversity we do not think of our own ethnicity but tend tothink about people with different skin colours, cultures or religions to our own.

(2009: 14)

The implications of this insight for majority culture service providers are identified by Whitfieldet al. who suggest that ‘Rehabilitation professionals should be aware of the ethnicities of thecommunities that they serve and how the ethnicities of the office in which they work mayinteract with the ethnicities in the community’ (2010: 102–103).

Much of the current literature reflects the fault lines that identify racial disparities amongdisabled people largely in terms of minority cultures and calls for creating culturally sensitiveand competent services that value these differences and provide services for different groups. Asmall portion of the literature reflects upon the inequalities that exist outside of race/ethnicityincluding poverty, access to health care and socio-economic status.

Multiple and intersecting identities result in multipleand intersecting oppressions

Over the past decade an increasing number of articles and books have been publisheddrawing on the experiences of people with disabilities from minority racial/ethnic groups.Most use qualitative research methods, while some draw on narrative analysis and storytelling.In general, what they suggest is that the multiple and intersecting identities of minority race/ethnicity and disability (among others) create situations of disadvantage, marginalisation andoppression that differ from the experiences of those who are disabled, or who are racialminorities. For many, these are experiences of being rendered invisible, being made – ormade to feel – an outsider, and being constrained or restrained as a result of their multipleidentities. The words used to describe these experiences are powerful and tell the stories ofpeople with disabilities from minority racial/ethnic groups in ways that illustrate the multipleand intersecting oppressions they experience.

Intersectionality

One of the common features of this literature is an increasing commitment to the practice ofintersectionality, that is, identifying, understanding and explaining the ways in which multi-ple identities or experiences combine to create unique barriers. ‘Intersectional discriminationmeans people are discriminated against in qualitatively different ways as a consequence of thecombination of their individual characteristics’ (Cramer and Plummer 2009: 164).

This means, for example, that the explanations provided by considering disability are notsufficient for understanding the situations of women immigrants with disabilities. We alsoneed to consider immigration status, gender, culture and religion, and the ways in whichthey may reinforce experiences of marginalisation or exclusion, as well as challenges to thestatus quo. Parin Dossa provided rich stories of intersections in some women’s lives. ‘Mywork aims to show that race and gender matter and that these social markers of differencecannot be dismissed under the seemingly neutral category of disability, the reference point forwhich is young white males’ (Dossa 2009: 5).

Multiple possible intersections emerge when we begin to use this approach, including theunique barriers for older persons with disabilities (including older immigrants with disabilities),


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the increased presence of poverty of women with disabilities, the higher unemployment andunderemployment rate for persons of colour with disabilities, the benefits of culturally specificservices for parents of children with disabilities, the lack of services for Aboriginal children withdisabilities in First Nations communities and the jurisdictional barriers for Aboriginal peoplewith disabilities living in urban areas (Lo 2010; Cramer and Plummer 2009; Hirji-Khalfan2009; Shackel 2008).

Krissy’s stories as an African American woman labelled as having learning disabilities illustratethe challenges that multiple and, at times conflicting, identities can present.

Many of us are fragmented selves, individuals who chose at one time or another toassume a different role or identity. In Krissy’s case her choices were limited. Manymultiple identities had been imposed upon her, notably not one of which mostpeople would choose for themselves. In coming to know and understand Krissy itoccurred to me that she had little choice but to negotiate these conflicting identities.Like a chameleon, she accentuated one identity while downplaying or denyinganother. It was how she survived. In doing so she was unable to fully express herselfas an embodied human being.

(Petersen 2006: 730)

The barriers that Krissy encountered, as well as those identified when we use intersectionalanalysis, illustrate some common and significant barriers faced when people live with bothdisability and as part of a minority race/ethnic group. These include being invisible or anoutsider as well as being restrained and constrained.

Outsider and invisible

The intersections of race/ethnicity and disability often lead people to feel like they are out-siders to the mainstream society. For some, this includes a perception that they do not mea-sure up to a standard.

One of the first stories she [Krissy] told me was that of being a transplant. ‘A what?’I asked, immediately needing clarification. ‘You know a transplant,’ Krissy said, ‘Iwould have gone to East High School, but my mom open enrolled me to the[university] lab school instead. She thought I could get a better education there.You know, she wanted me to have a better life than she had’. … Later on she toldme ‘You know, we were below middle class, like almost there, but not quite’. Iwondered if the words middle class might be substituted with ‘white’, ‘men’ or ‘ablebodied’. I began to understand what Krissy meant by transplant. In so many words,Krissy expressed feeling like an outsider, someone who was not quite good enoughor was perceived as not measuring up.

(Petersen 2006: 724)

For others, that experience of outsider renders them invisible or rejected. Parin Dossa suggeststhat:

The immigrant racialized woman is constructed as an outsider; add disability to thisconstruct, and she is rendered socially invisible. If she is identified, she is ‘designatedby the term “problem”; and she lives beneath the shadow of that problem which


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envelops and obscures her’. It must be noted that able-bodied racialized women aredesirable for their labour, whereas women who have disabilities – deemed to beneither waged workers nor homemakers (unpaid workers) – are constructed as asocial burden. They are construed as recipients, rather than givers, of care.

(2009: 24)

For people with disabilities who want to immigrate to Canada and other countries, theirstatus as disabled renders them ineligible to do so (Capurri 2010), and refugee women withdisabilities are not wanted.

Able-bodied refugee women may be granted asylum with the expectation that theywill take up dead-end and poorly paid jobs. A disabled body, erroneously assumed tobe unfit for waged work, is not wanted. Constructing racialized people who havedisabilities as the Other of the Other, Canadian immigration policy bars the entry ofapplicants with disabilities, the significance of which cannot be overstated. Racializedwomen who have disabilities are not part of the multicultural and gendered landscapeof Canadian society. Finding themselves isolated and unwanted, they are left to theirown devices to negotiate the realities of their lives in their new homeland.

(Dossa 2009: 34)

The experiences of feeling like an outsider may also turn into experiences of being disen-franchised and discarded. Stories of 13 lawful residents or citizens of Australia who had beenwrongly detained as a result of the intersections of race and disability illustrate how being madean outsider happened. ‘Racism (in the initial formation of suspicion) and disability discrimina-tion (in the maintenance of suspicion and silencing of disabled voices) were critical aspects of allthese cases, aspects so far not adequately investigated’ (Soldatic and Fiske 2009: 293). Theauthors tell stories including that of Vivian Alvarez.

Vivian Alvarez was an Australian citizen who had a mental illness and additionallysustained a head injury and memory loss, probably in an accident shortly beforebeing found in a park at midnight. She was taken to Lismore Hospital, New SouthWales on 30 March 2001 and was later transferred to a psychiatric clinic, where asocial worker called the Immigration Department and said she suspected Vivian wasan ‘illegal immigrant’. Immigration officers interviewed her on 3 May 2001 andassumed she had been trafficked into Australia as a sex worker. They did not com-plete comprehensive database searches for her name and instead began deportationproceedings. Vivian stated on a number of occasions that she was an Australiancitizen, that she held an Australian passport and gave her correct name and date ofbirth; however, immigration officers persisted in their opinion that she was anunlawful non-citizen without conducting adequate searches based on informationshe gave and on 20 July 2001 Vivian was deported to the Philippines … Vivian hada mental illness and was from a non-English speaking background. Additionally,Vivian was Filipina, an ethnic group stereotypically associated in Australia with mailorder brides and sex workers.

(Ibid.: 291)

In the stories of the 13 lawful residents or citizens of Australia and Vivian, it is the inter-section of disability and minority race/ethnicity that can create experiences of being an


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outsider, invisibility, or being set outside the protections and rights that non-disabled,majority culture citizens access and expect.

Contained and restrained

An intersectional analysis of disability and race/ethnicity also illustrates the ways in which socialrestraint and containment are used as vehicles to manage the people who experience theseintersections. In an innovative project with participant researchers narrating their experiences ofthe intersections of disability, race and class in special education, Connor (2009) suggests that theintersection of these identities led to experiences of restraint or containment.

Comments from participant researchers reveal experiences and understandings ofhaving their movements literally inhibited in terms of disability (segregated classes, IEPdiplomas), race (workplaces, public places, school locations), and class (opportunities forfurther education, job expectations, neighbourhoods to live in). Thus, the feeling oflimitations imposed upon these individuals is exacerbated by negotiating all three dis-courses that indicate very real forms of social restraint. Furthermore, these restraints areoften not seen, felt, or understood by those without the same marker(s) of identity.

(Ibid.: 465)

For Michael, restraint was the extension or outcome of being labelled an outsider.

As a student labeled LD [learning disabled], he is stigmatized and ostracized by peers.Unlike race and class, LD does not trigger ‘pride,’ but rather shame. Stereotypic main-stream expectations of Michael position him as lazy and/or ‘unable’ because ofmisperceptions of LD and long held assumptions of racial inferiority. His fate is ‘sealed’ inspecial education because his working-class mother, while to some extent a class-straddleris still unable to ‘take on’ the intricacies of special education bureaucracy. Unlike middle-class students, Michael does not have a sense of entitlement to attend college; he knows hehas to work extra hard to transcend the expectations placed upon him. At the less valuedside of three binaries, Michael understands the sense of restraint placed upon him as ablack, ‘disabled’ learner, from a working-class background.

(Ibid. 2006: 163)

Dossa tells the story of how the complexities of race, gender, disability and immigrationstatus intertwined in Mehrun’s life to force her to live, constrained, in two different ways —first being constrained not to eat or drink as required and, as a ‘solution’, removal to ahospital for more than year even though she was not ill.

While her mother went to work her father took care of her but there was oneproblem: Mehrun could not go to the bathroom.

‘My father would have taken me to the bathroom but I felt uncomfortable.Before my Mum went to work she took me to the bathroom and again when shecame home in the evening. I had to be careful with what I ate or drank in the day.I could hardly eat or drink.’

Social marginalization translates into deprivation of basic human needs which inthis case amounted to coerced starvation for close to a year because there was nofemale available to assist Mehrun with personal hygiene.


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The social worker placed Mehrun in a hospital so that her father could undertakewaged work. In Mehrun’s words: ‘The social worker said: “he cannot stay at homefor ever. He needs to work.” Taking care of his daughter was not consideredwork … In the hospital Mehrun was compelled to live with a disability identity,reinforced by the fact that she was among people with different kinds of disabilities.She was looked upon as a woman with polio. Her gender and race were relegatedto the background because her disabled body became the focus of attention. Herone-and-a-half-year stay at the hospital was humiliating as Mehrun was not sick.

(2005: 2530)

These are very sharp examples of the daily, lived experiences of the intersections of race/ethnicity and disability, experiences in which solutions to the ‘problems’ that these peopleposed were to contain and restrain them in ways that are often considered appropriate bybroader society. But the insights from this research also illustrate how people with thesemultiple and intersecting identities recreate their worlds by claiming their citizenship rightsand access to programmes and services and by using their stories to give meaning to theseexperiences and share them with a wider audience.

Responding to multiple, intersecting oppressions

Despite the assumptions of many, those who experience the intersections of disability andminority race/culture are not simply victims of injustice and oppressions, even though theseexperiences shape their lives. Using their stories and experiences, they also have challengedthe structural, cultural and individual perceptions and actions that render them invisible,outsiders, restrained and constrained.

Claiming citizenship rights

As the mother of two children with disabilities and a racialised Muslim immigrant woman,Tamiza challenged the discourses that might render her and her children invisible, outsidersor constrained. She recognised that ‘as a citizen and as a taxpayer’ she was entitled to serviceslike everyone else.

She recognizes that some good programs are in place but that people do not know oftheir existence. She stated that she was able to secure services in bits and pieces ofinformation gathered from the people she interacted with on a daily basis or throughchance encounters, such as a conversation with another mother while waiting to see adoctor. Once she learnt about the services, she noted that it was not easy to securethem. ‘There were papers to be filled and you had to prove that you were entitled tothe services. They asked for medical reports.’ Tamiza felt that as a minority it was moredifficult for her ‘as you do not know the system as well as they [mainstream people] do.’Yet, she noted that because she had family support she had the time to inquire ‘what isout there.’ Her fluency in English helped her to secure services though she emphasizedthat it was an uphill battle … Her experiences of raising two children convinced herthat she was entitled to services. She believed that ‘as a citizen and as a taxpayer,’ it washer right to access and use the social provision that her children needed to live likeeveryone else. Tamiza then advocated for their/her rights as well as those of the others.

(Dossa 2008: 94)


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The discourse of claiming the rights of citizenship and the responsibilities as taxpayers isalso used by the Council of Canadians with Disabilities (CCD), the national Canadianadvocacy organisation of people with disabilities. Marie White, former chair of CCD, arguedthat people with disabilities in Canada want to be taxpayers, which is one of the recognisedways of contributing to Canada as nation-builders, and thus have greater legitimacy incontributing to discussions on how those tax funds are spent.

People with disabilities don’t want to be sitting on the sidelines of life due to bar-riers in our community. The National Action Plan on Disability shares some stepson how Canada’s federal, provincial and territorial governments can assist Canadianswith disabilities to exercise their rights and responsibilities.

(CDD 2008)

People who experience the intersections of minority race/ethnicity and disability alsorecognise that they are citizens with rights. Their experiences of exclusion and barriersmake it difficult to claim those rights, and they receive little support through advocacyorganisations of people with disabilities since issues about minority race/ethnicity remain atthe edges of the overall priorities of these organisations. Not only do they have to advocatefor their own situations and rights as individual citizens, but frequently disability advocacyorganisations remain firmly entrenched in the disability discourse and an unstated majorityculture view.4

Some observers have recognised this lack of responsiveness by disability advocacy orga-nisations to issues of minority race/ethnicity by creating organisations that explicitly workon issues that emerge for those experiencing these intersections. In Canada, the EthnoRacial People with Disabilities Coalition of Ontario (ERDCO)5 is an unusual and veryactive example of those who bring attention, support and resources about both culture anddisability.

People with disabilities from minority race/ethnicity groups in collaboration withresearchers are also using storytelling and narrative as a way to share experiences of theseintersections and recreate the world in ways that include them.

Remaking the centre through storytelling and narrative

Throughout this chapter, stories from Krissy, Vivian, Michael, Tamiza and Mehrun have toldus about how they experienced these intersections. In foregrounding their experiences,names and narratives we have learned several lessons. First, stories alert us to what those whoexperience the intersections identify as important in these experiences (although clearlymediated through the researcher/author). By bringing the stories forward, we set them out asvaluable, important and worthy of attention (Connor 2006: 155). Stories also give those whotell the story a chance to make meaning from their experiences, even if they are painful, andto share them with others and receive a response (Dossa 2006: 353).

Part of the act of storytelling is also the making of social change, of recreating the world, withthe stories of individuals who have been excluded, marginalised and constrained included.

[S]tories/narratives have the potential to effect social change, provided they formpart of the larger political, social, historical, cultural and literary landscapes ofsocieties. Racialized women with disabilities are not part of the Canadian landscape.Their structural and social exclusion are intense. Yet their stories must be heard if


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we want to write a different kind of Canadian history: a history where women withdifferent abilities and from different cultural backgrounds have an active presence.

(Dossa 2008: 91)

Researchers have a responsibility to ensure that these stories are valued and gathered andtold in ways that are culturally respectful, recognising the potential that the stories have tobring about social change. This requires research methods that are culturally appropriate,including reflecting upon majority cultural values that find their way into dominant researchpractices and values. In Canada, the academic funding agencies have recognised some of the‘whiteness’ of research ethics in their inclusion of particular ethics practices required forworking in and with Aboriginal communities.6

While telling the stories of people who have been excluded and marginalised as a result ofdisability and minority race/ethnicity is a critical step forward in a more inclusive andauthentic account of the world, it is not enough. As Chris Bell reminded us, part of reflectingon race/ ethnicity and disability is also recognising the often-unstated experiences, privilegesand perspectives that arise from majority race/ethnicity and disability experiences. It is talkingabout how white privilege and the use of English has shaped the culture and practices ofschools, income security, and health and social services; how racial disparities in the presenceof impairments and the use of services also tell us about the situations of those from majoritycultures; and that when we speak of the barriers faced by people with disabilities we are reallyspeaking of those from minority and majority race/ethnicity backgrounds and should providethose experiences in common and those that vary as a result of intersections.

Notes

1 My deep thanks go to Natalie Brewer for her assistance with this work.2 This comment must be qualified as evident in the English literature that primarily reflects upon US,

Canadian, British and Australian data. I did not review literature in languages other than English.3 Disability in this section is being used as it is used in the literature – as impairment.4 The exclusionary Canadian immigration policy has come under attack regularly from the CCD owing

to its exclusion of people with disabilities, but the Council provides little analysis of the racialisedintersections of these exclusions.

5 For more information, see www.erdco.ca (accessed 10 September 2011).6 These are included in the second edition of the Tri-Council Policy Statement: Ethical Conduct for Research

Involving Humans, ch. 9. Available at www.pre.ethics.gc.ca/eng/policy-politique/initiatives/tcps2-eptc2/Default/ (accessed 10 September 2011).

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33

MOTHERING AND DISABILITY

From eugenics to newgenics

Claudia Malacrida

Until recently, the experiences of disabled mothers have been unexamined, even withindisability-specific research; these women are also notoriously underserved by policies andsupports relating to families and parenthood more broadly. Importantly, this lack of infor-mation about and accommodation of the experiences and needs of mothers with disabilities isoften at the root of the challenges faced by disabled women in bearing, raising and main-taining custody of their children. The dearth of information, policy and services relating todisabled mothering is firmly embedded in historical and enduring ideas about disability andthe right to reproduce and rear children. Indeed, it is not unreasonable to speculate that thiselision operates as a covert yet consistent extension of the history of disability in general andeugenics in particular. In this chapter, I begin with a brief summary of foundational literatureon problematic discourse and practice regarding the ‘appropriateness’ of parenting with adisability. This is followed by a consideration of gender specificity in terms of mothering (asopposed to ‘parenting’) a child while disabled. I then move on to an overview of somechallenging intersections between current policies and services and disabled women’sexperiences of becoming and being a mother, arguing that although overt and often legaleugenics programmes have been rescinded, covert and quasi-legal means persist in limitingdisabled women’s access to reproductive justice. I conclude with some suggestions forresearching and theorising mothering and disability, arguing specifically for a feminist andpoststructural approach to understanding the barriers and possibilities in policies and practicesrelating to mothering and being disabled.

The underlying issues: disability, mothering, eugenics and newgenics

In Western Europe and North America, up until the late nineteenth and early twentiethcentury, it was common for people with disabilities to live at home and remain in theircommunities. Nevertheless, they were rarely encouraged to marry and have families. Instead,people with mental, physical, sensory and intellectual disabilities were often hidden from thepublic eye and kept in social isolation, fostering and reflecting a common understanding ofdisabled people as dependent and incapable of filling adult roles of intimacy, sexuality andparenthood (Rafter 1997; Trent 1994). In the early years of the twentieth century, a pro-gressivist belief in the power of education and medicine to cure social ills led to the rise of

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small schools and residential centres for people with intellectual, physical, mental health andsensory disabilities. Originally, at least some of these institutions were premised on anexpectation of ‘improvement’ of the residents and the hope of community reintegration andfull citizenship. However, when it became apparent that not all institutionalised peoplewould be easily rehabilitated, and when the helping professionals involved began to buildtheir own empires based on constructing disabled people as requiring continuing care, thesesmall, short-stay training centres soon burgeoned into a system of huge, long-term institu-tions (Albrecht 1993; Johnson 2003; Trent 1994). The institutional system operated as a formof passive eugenics, often sequestering people for their entire lives as a way of ensuring thatthey would not ‘pollute’ their societies with ‘tainted’ offspring (Malacrida 2015). The insti-tutions also operated in more active eugenic ways. In Canada and the United States, somewere the sites of regulatory bodies that either funnelled their residents into the eugenicsystem or in some cases even performed sterilisations in-house on inmates, in the hope ofimproving the stock of the general population; others offered ‘voluntary’ sterilisation as acondition of discharge or as a means of avoiding internment (Radford 1994; Ramsay 2000;Schoen 2001; Trent 1993).

Eugenics proponents targeted people with disabilities outside of the institutional system aswell, and in their communities, women with disabilities were disproportionately victims ofinvoluntary or coerced sterilisations (Malacrida 2015). In the United Kingdom, although therewere no official involuntary sterilisations, the 1913 Mental Deficiency Act illustrated widespreadsupport for ‘voluntary’ eugenics, and it is speculated that many disabled people – and women inparticular – were sterilised unwittingly or without their fully informed consent (Walmsley 2000).In both the United States and Canada, eugenics programmes linked race (often including groupsthat today would not be racialised, such as Italians, Greeks and Ukrainians), poverty and intel-lectual disability to gendered norms, whereby intellectually disabled women were characterisedas a particular threat to the moral order (Malacrida 2015; Stubblefield 2007). Eugenic pro-grammes involving varying passive and active eugenic methods, and varying approaches tovoluntarism and degrees of ‘success’ were effected in Japan, Germany, Scandinavia and NorthernEurope, and again, these disproportionately regulated the sexuality of women rather than men(Burleigh 1997; Drouard 1996; Kevles 1995; Morita 2001). Furthermore, such eugenic effortsdid not necessarily die off with changed political and social sensibilities.

Despite the reality that most disabilities are not heritable, there is still evidence that disabledwomen face both active and passive forms of ‘newgenics’, a term I have coined when referringto the subtle, covert or informal ways that disabled women’s reproductive options continue tobe policed. Disabled women are still pressured by family members, helping professionals andmedical personnel to consider sterilisation as a way to avoid the purported impossibility ofmothering a child while living with a physical, mental or intellectual disability (Brady 2001;Hamilton 2012; Steel and Dowse 2016). Sometimes, these pressures to take up long-term birthcontrol are tied to the promise of benefits such as freedom from guardianship arrangements orliving independently (Malacrida 2016). It should also be noted that newgenic beliefs alsooperate in indirect ways through a persistent ambivalence concerning all aspects of sexuality forwomen with disabilities. There is a strong need for information, on the one hand, aboutachieving a full adult sexual life and in obtaining support – both physical and cultural – fordisabled women to access a healthy and satisfying sexuality (Mona 2003; Santos and Santos2018). On the other hand, there is little information available specific to disability concerninginappropriate sexual contact, harassment, sexual exploitation and sexual violence, to whichwomen with disabilities are particularly vulnerable not only from friends and lovers, but alsofrom helping professionals and care providers (Asch et al. 2001; Hollomotz 2012). Finally, there

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is woefully little information available about giving birth or obtaining post-partum care that isspecific to mothers with disabilities (Disability, Pregnancy & Parenthood 2002). Taken as awhole, the lack of information for and about disabled women on these important axes ofsexuality and reproduction indicates a remarkably robust eugenic to newgenic continuumworking to prevent disabled women from making, birthing or raising children in modernWestern societies.

The underlying issues: gender, structure and disablism

Inevitably, there will be readers who question a focus on ‘mothering’ rather than ‘parenting’and disability, but reproductive control and parenting support are both highly gendered arenasin which women bear an unequal burden. As noted above, disabled women’s potential formotherhood has been disproportionately regulated in Western societies, as is evidencedthrough the inordinate targeting of women specifically during the eugenics era and in thecurrent newgenic context through pressuring disabled women to use both temporary andpermanent forms of birth control, and by withholding information about and support for dis-abled women’s sexuality (Gerodetti 2003; O’Toole 2002). Furthermore, this targeting has beenmost virulently levelled against women who are marginalised due to poverty, poor health orsingle motherhood, all of which are heightened possibilities for women with disabilities. Giventhe unequal sexual policing of women’s reproduction in general, coupled with heightenedcultural anxieties about disabled women’s reproduction in particular, it is clear that disabledmothers’ sexual and reproductive bodies act as dense transfer points of power relations(Foucault 1990), and are heavily burdened by moral, social, legal and economic regulation.

In addition to reproductive and sexual control, women with disabilities, because of gen-dered norms and structures, are more vulnerable to perceived and actual parenting challengesthan are disabled men. While all people with disabilities face educational and occupationalbarriers and a higher than average likelihood of living in poverty, women with disabilities areeven less likely than disabled men to be encouraged to achieve educationally, and they thusfind fewer work opportunities at lower pay than men with disabilities or than women whoare not disabled (Malacrida 2010). If women with disabilities are mothers, and particularly –

as is quite likely – if they are single mothers, these lowered educational, employment andincome opportunities will have a significant impact on their and their family’s quality of life,and can pose challenges to mothers in providing a ‘good enough’ home situation for theirchildren (Asch et al. 2001). As a result of educational and employment barriers and a heigh-tened likelihood of parenting alone, women with disabilities are also more likely to facedependency on state funding than most citizens (ibid.). In turn, this can make disabledwomen vulnerable to state interventions that while ostensibly offered as ‘help’ may in fact beprofoundly disruptive; there is ample evidence that intervention into family life also increasesa likelihood of surveillance, particularly in homes where there is poverty or social margin-alisation (Strega et al. 2002; Swift 1995). Mothers with disabilities often find themselves atheightened risk of scrutiny, and while this is partly because of the poverty and marginalisationthat can accompany disability, it can also occur because the embodied qualities of disabilitycan mean that workers and state employees, in providing care and support to disabledwomen, also breach the bounds of privacy that other citizens are likely to enjoy. This dualrelationship of service provider and public employee can create difficulties; it has been arguedthat helping professionals, social workers and the family court system operate from a deficit

model of disability, frequently characterising women with disabilities as inappropriate for therole of mothering and as incompetent regardless of their actual mothering practices (Breeden


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et al. 2008; Malacrida 2009a, 2009b). As with many aspects of disability oppression, thesenegative ascriptions and their effects are worsened if a mother has an intellectual disability, aprofound physical disability or mental health problems (Booth et al. 2005; Mosoff 1997).

A final reason to concentrate on mothers rather than on all parents with disabilities is becauseof the gendered qualities of parenting itself. Despite feminist attempts to denaturalise ideals ofmaternal responsibility for childcare, mothers are normatively expected to provide nurturance tothe men in their lives through emotional support, and to the children in their lives throughactive, involved and expert mothering – indeed, being a mother/caregiver is a master status foradult women in modernity (Hays 1996; McMahon 1995). The ideal mother in Western cultureis positioned as a woman who mothers naturally, is always and immediately present to care forher baby or child, and who does this mothering selflessly and seamlessly (Choi et al. 2005). Inshort, in the current ideology of intensive mothering, modern mothers are ideally expected to beall things at all times to their children: strong role models, endlessly nurturant, child-focused andwithout limits to their capacity for care (Hays 1996). Women with disabilities who experiencelimited economic and social resources, who have their own requirements for care, and who oftendo not receive adequate support from disability and family services providers, face sustainedchallenges in living up to this ideal.

The ideology of intensive mothering is often expressed in formal institutional practices: socialservices, medical and educational institutions and government agencies continue to considermothers as the primary moral guardian in the modern family (Swift 1995; Abramowitz 1996).Furthermore, mothers with disabilities are particularly likely to be judged by helping profes-sionals as offering an inadequate or not ‘good enough’ sort of mothering, coloured by the mythof the upside-down family. This myth, and a broad professional literature that draws upon it,presumes that disabled mothers not only fall short of ideal mothering by being financially,physically or intellectually inadequate, but that they also depend on their children for care andservices, exploiting these ‘young carers’ and robbing them of their childhoods (Sigurjónsdóttirand Rice 2018; Lanci 2018).

Not only are mothers seen by policymakers, social workers, teachers and medical personnelas naturally and completely responsible for the care and safety of their children, they are alsoconceived of as being responsible for choosing safe partners and for regulating their partners’behaviour: ultimately, mothers are held culpable when any type of family violence or break-down occurs, even when they are themselves victims (Knowles 1996; Roberts 1999). Thisresponsibility is particularly onerous when we consider that women with disabilities are farmore likely than other groups of women to be victims of sexual, psychological, economic andphysical violence both from their intimate partners (Brownridge 2006; Olkin 2003) and –

ironically – from the helping professionals and institutions that are charged with providingmothers with support and services (Nicki 2001; Saxton et al. 2001).

Women with disabilities face enhanced challenges in achieving idealised mothering on theone hand, and they are particularly vulnerable to mother-blame and heightened scrutiny on theother. This is partly because women with disabilities often engage in mothering with fewerresources and more barriers in the public and private spheres than do women without disabilities.In the public sphere, disabled women’s mothering is often constrained by poverty, inadequatehousing and the inaccessibility of public spaces (Grue and Laerum 2002; Malacrida 2009a). In theprivate sphere, in addition to heightened probabilities of lone parenting, poverty and vulner-ability to abuse, disabled women’s embodied differences are not accommodated through policiesand service programmes (Blackford 1993, 1999), a topic which will be explored further below.

In sum, mothers with disabilities face economic, social and environmental barriers to theirmothering in the public sphere while at the same time bearing particular burdens in the


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private sphere. These barriers – poverty, heightened vulnerability to abuse, the stigmatisation ofdisability and normative notions that women with disabilities are ‘naturally’ unsuited tomotherhood – comprise a disablist culture for mothers with disabilities, and this disablist cultureis in many ways the most challenging aspect of engaging in motherhood for women withdisabilities. Thus, the balance of this chapter examines policy and service delivery issues relatingto women with disabilities and their families. This is a critical aspect of disabled mothering,since it is clear that policies and programmes relating to housing, income, employment, per-sonal and childcare services, family support and community inclusion are themselves disablingto women and their children (Asch et al. 2001; Chouinard 2006; Chouinard and Crooks 2005).

Challenges: policies and programming for disabled mothers

The cultural ambivalence concerning motherhood for women with disabilities is clearly evi-denced by the dearth of information available for and about such women in mainstream familypolicy; indeed, if one were to explore research or policy on families, one could be forgiven forassuming that all mothers are people who do not have any physical, intellectual, sensory ormental health issues. In terms of government research, for example, recent Canadian census dataincludes information about disabilities, and information about family and marital status, but thereis no indication of the number of parents (or mothers) with disabilities, or the type and severity ofthe disabilities experienced by parents. These data are available for children with disabilities, butembedded in the census is a presumption that people with disabilities will not have children.Similarly, a recent Statistics Canada survey specifically of disabled women offers only a brief nodto family status, finding that disabled women are more likely to be lone parents, but not tyingthat situation to poverty, employability, abuse, or precarity of custodial arrangements, all ofwhich have been noted in disability research (see Burlock 2017).

Disabled parenting is not only marginalised or absent in some government policy, but it isalso under-represented in family and disability-specific research. Traditional helping profes-sional and academic research on families and disability has tended (similarly to governmentresearch) to focus on children with disabilities in families, indicating an unspoken assumptionthat disabilities and parenting are incompatible. When traditional helping professional andacademic literature has focused on parents, the perspective has been from a deficit model,whereby parents with disabilities are seen as operating from a position of inadequacy, ratherthan acknowledging that it is the systems relating to disabled parenting that are inadequate(Family Rights Group 2009; Malacrida 2009c). The little supportive research we do have hascome primarily from the field of disability studies, and this literature is relatively recent.Perhaps this is because in so many Western countries (although this is arguably particularlythe case in the UK), the social model of disability is ascendant. The social model has con-centrated its analyses along materialist lines, with a focus on access to labour force inclusion,access to education and accessibility in the built environment (Thomas 2007). In turn, thishas meant a lack of attention to ‘non-productive’ labour and the private sphere (ibid.) and aneglect of feminist concerns, including motherhood (Wendell 1996); as feminists have arguedmore broadly, materialist approaches have failed to account for reproduction, child-rearingand labour in the private sphere. Not surprisingly, the social model of disability focus onworkplace and education has been particularly detrimental to mothers with disabilities, whosechallenges are perhaps more likely to be in the private than in the public sphere.

Given the above, what are some of the challenges specific to disabled mothering, and howdo these intersect with policy gaps and erasures? In the following section, I offer a briefoverview of some of these issues.


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Erasing and undermining motherhood in disability research and policy

Policy is, of course, much more than words, comprising a template that guides practicesacross the board for mothers with disabilities. Policies concerning financial support, homecare and personal support services, education, employment, daycare, housing, transportation,child custody and child welfare programmes affect virtually every aspect of disabled women’slives. Despite this, most of these policies are not written accessibly and – more central to thisargument – they typically fail to take into account the possibility of motherhood and dis-ability. It is thus crucial to speak to mothers themselves about how these policies andpractices impinge on their parenting.

In my own research, I have spoken to disabled mothers whose narratives often point outinconsistencies in policy and programme delivery, and whose situations also indirectly highlightgaps in current research approaches to understanding disability. These mothers describe barriersin the public sphere that are not generally considered in mainstream disability policy and socialmodel research relating to accessibility, with its focus on public buildings and the paid work-place. In addition to their concerns about public spaces such as shops and worksites, mothersdescribe how inaccessible playgrounds and parks mean that mothers either cannot accompanytheir children while they play or must watch from a distance, potentially compromising theirchildren’s safety. Parent-child groups are often held in church basements, private homes orinaccessible community centres, but this precludes mothers’ community involvement andincreases their and their children’s social isolation. Children’s schools, pre-schools and daycareare often inaccessible unless designed specifically to be inclusive for children with disabilities, andthese accessible schools are rare, so that mothers must choose (where such choice is possible)between allowing their children to attend school in their local community or driving them(when such an action is possible) to an accessible school far from their neighbourhood (Mala-crida 2007, 2009b). In all these public sphere issues, listening to the voices of mothers abouthow they live their lives exposes gaps where both policy and research ignore disabledmothering. These stories also illustrate how such gaps can potentially contribute to negativeperceptions about disabled women’s ‘failed’ mothering; children who cannot go to school withtheir friends, who cannot attend developmental educational programmes with their mothers orwho cannot enjoy simple childhood play in a public space can be seen by outsiders (includinghelping professionals) as children who are being poorly mothered. In this context, the realculprits such as poor policy and research, and inadequate planning and programmeimplementation, can remain unexamined and hence blame-free.

In a similar vein, the issues confronting mothers in the field of employment can be dif-ferent from those described in much disability research, and disabled mothers’ workplaceissues are often directly related to policy gaps and programme designs that fail to accom-modate mothers’ family-related needs. In mainstream disability research, there is a strongfocus on disability accommodation in the paid workplace, and although recently somewhatmore attention has been paid to gendered problems, particularly in terms of analysing low-ered income and educational opportunities for women, there is little direct consideration ofthe special challenges that disabled mothers can face. Only rarely does the literature considerthat unpaid labour comprises a significant portion of women’s working lives, and that thelack of compensation and/or support for accomplishing that work amounts to workplacediscrimination (McDonough 1996); even more rare is an acknowledgement that motheringcan be and often is a job for disabled women that should be supported through both familyand disability-related policies and programmes. Not surprisingly, in terms of policy and pro-gramme delivery, there is virtually no state funding or programming to specifically


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compensate or support disabled women for their disability-specific challenges in home-making or caregiving. Instead, disability-related services typically offer support to the indi-vidual with the disability alone, which can mean that mothers receive in-home care buttheir young children, who are not themselves entitled to care services, are left to fend forthemselves, an issue that will be discussed more fully below (Malacrida 2007, 2009a).

While there is virtually no research that takes on the question of financial compensation fordisabled mothers’ child-related labour, there is also little consideration in research or policy ofthe temporal and career trajectory issues faced by disabled mothers. Mothers, particularlymothers of young children, often take time off from paid work during the intensive earlychildcare years, and once those years have passed, such women are often challenged to findtheir place again on the career ladder (Leth-Sorensen and Rohwer 2001). For women withdisabilities, who are among the most discriminated-against workers (Burlock 2017), a decisionto step out of the paid workface to accommodate childbirth, recovery from childbirth andearly infant and childcare can sound the death knell to career aspirations; these women facetremendous challenges in finding work in the first place, let alone after a hiatus that poseschallenges to any female returning to the paid workforce. In turn, this can heighten mothers’dependency on either a partner or the state for income support. In the first instance, this canmean that women can become trapped in relationships that are abusive or unhappy; in thelatter ‘option’, it can mean impoverishment and vulnerability to surveillance. In Canada, thequestion of forced dependency on a male partner is further compounded by policies thatprovide income support only for the disabled person, without any provision for the disabledindividual’s dependent children who also require financial support (Malacrida 2009d).

Finally, it is important to add that part-time work is often a solution for many mothers withyounger children or who are returning to the workplace after taking time off to birth and raisechildren. However, for mothers with disabilities, the option of part-time work can often meanrescinding one’s rights to income or disability benefits; many programme benefits cease withany paid employment. Again, the result can be that disabled mothers find themselves eitherdeclining their due benefits or staying out of the workplace, resulting in impoverishment, socialisolation, dependency on the state or a partner, and in a diminished lifestyle for themselves andtheir children. In short, the failure of income support and workplace-related policies andprogrammes to accommodate the particular situations and needs of mothers with disabilitiesactually contributes to negative aspects of living with a disability.

One last issue that deserves consideration in terms of eliding and/or erasing disabledmothers’ experiences is that of disability service delivery. I will use two examples to illustratea need for research that moves beyond traditional disability studies’ approaches and for policythat recognises the possibility that disabled women are frequently mothers. Mainstreamresearch on disability service delivery focuses on the challenges that persons with disabilitiesface in obtaining adequate, affordable services. In this literature, services for persons withdisabilities are typically characterised as under-serviced, meaning that programmes and benefitsfor disabled people are inadequate, difficult to access, fragmented and not designed to meet theneeds of persons with disabilities. In this vein, researchers have pointed out that many of thepolicies and programmes offering support for individuals with disabilities are inaccessible topeople with disabilities because they are couched in dense language or are available onlyin print form rather than Braille, plain language, signing or spoken language (McVilly 1995).Others have noted that not only the form, but also the intention and content of disability-related policies can impose barriers to access. Thus, many individuals who require these servicesare deemed to be ineligible for them, or they are provided with services that only partiallymeet their needs, or they must deal with hostile or untrained workers who can also act as


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gatekeepers to services (Gill et al. 1994). Further research on disability-related agencies asunder-serviced indicates that service providers are plagued by lengthy waiting lists and theyface difficulties in fulfilling their mandates due to difficulties in maintaining a dedicatedworkforce (Roeher Institute 2001).

While these barriers to services also exist for mothers with disabilities, the extant researchdoes not acknowledge how disability service delivery can pose additional burdens for motherswith disabilities in two distinct ways. First, in addition to the traditional concerns raised bydisability research on under-serviced programme delivery, mothers with disabilities can alsoexperience disability service delivery as over-serviced. By this, and drawing on both feministconceptions of power as written on women’s bodies in the private sphere and on post-structural conceptions of power as deployed through the uses of knowledge and seeminglybenign practice, I mean to say that service delivery can act as a point of penetration andsurveillance for state workers into the lives of mothers with disabilities. Because many of theservices that disabled mothers require involve the home front and intimate personal care,inviting workers into the home can operate as a way of controlling women, of knowing andjudging their intimate practices and of finding them wanting. Mothers are themselves veryaware of the threat of surveillance that is attached to intervention; for example, many womeninterviewed in the UK and in Canada describe declining to seek help for fear of being judgedas inadequate, preferring instead to rely on their own resources to compensate for policyshortfalls rather than run that risk (Malacrida 2009c). It is important to note that thesemothers’ perceptions about being seen as inadequate are not without grounds; mothers’ dis-ability status has been used successfully to disqualify their claims to custody, particularly if themothers have intellectual disabilities, mental health problems or profound mobility limitations(Booth and Booth 1998a; Lanci 2018; Mosoff 1995).

The second problem for women with disabilities is that much service delivery does notinclude an understanding that mothers’ lives are lived in tandem with those of their children.This seems fairly obvious; however, most programmes (like much of the research) relating todisability are designed for individuals, without consideration of the individual’s embodied andembedded responsibilities in the private sphere. In Canada, home care services that includepersonal hygiene, feeding and housekeeping are specifically designed for the recipient alone.Thus, it is not uncommon for women to receive home care services whereby the worker ispermitted to feed, dress and clothe the mother, but cannot provide the same services to ababy or toddler unless that child is also labelled as disabled. Likewise, in the UK, where atleast nominally there is policy acknowledgement that disabled people can also be parents,services for adults and services for children are administered and delivered separately. Thus, ina similar vein to Canada, while a mother may indeed be eligible for personal care services,unless her child is eligible in its own right to such care, the service for the child will not beforthcoming. As with the issue of fragmentation and underserviced programme delivery, thenet result of separating children’s and mothers’ needs means that, for many mothers withdisabilities, the choice is to either privatise their care via family and friends, or to ‘make do’ tothe best of their capacity and hope that this will result in – and be seen as – ‘good enough’mothering (Malacrida 2009a, 2009b). Either way, service delivery is yet another example ofways that policy, research and programmes, because they elide and erase disabled mother-hood as a possibility, add to the burdens carried by disabled mothers and their families.

Thus, in addition to the usual problems of inadequacy and inappropriateness associatedwith disability service delivery, surveillance issues and a lack of consideration of mothers’roles can create a dilemma for mothers with disabilities. Ironically, the presence of disabilitysupport workers in the home can mean that, on the one hand, the children in the home are


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not entitled to any services and, on the other, it can open up the private home to scrutinyfrom those workers who are there to support the parent (Malacrida 2009a, 2009c).

Future considerations: bringing mothers in

Historically, disability and motherhood have been both understood and managed as thoughthey are antithetical. From formal active eugenic policies, through passive eugenics in theform of institutionalisation, to a persistent lack of research, education, accommodation andsupport for disabled women’s sexuality and mothering roles, continuities persist in terms ofcultural ambivalence over disabled motherhood. Thus, while in the current context suchambivalence is no longer sustained and expressed through active and official eugenics pro-grammes, a wide range of research, policy and service delivery both erases and underminesthe realities of disabled mothering.

Mainstream disability studies has offered a trenchant critique of medical models of disabilityand has provided important insights into the experiences of disabled people in general, but thatcritique can only provide partial insight into and policy recommendations for the issues facedby disabled mothers. As we have seen, disability research that takes a materialist analysis oftenoverlooks the intersections between disabled women’s multiple sources of oppression and theirembodied relationships of interdependency. Research on workplace accommodation andinclusion, while valuable, cannot offer the kinds of insights and subsequent policy recommen-dations needed by women whose labour is embedded in caregiving in the private sphere. Forexample, traditional research relating to disability accommodation in the built environment,with its focus on the accessibility of the workplace and educational institutions, has notaccounted for the barriers that women encounter in accessing playgrounds, daycare, schoolsand social spaces that are crucial to their children’s development and to perceptions of themothers’ parenting as ‘good enough’. Likewise, while research relating to services for peoplewith disabilities can make important contributions to our understanding of service shortfalls,when that same research fails to include the reality that disabled mothers are not only receiversof care but also must be providers of it and that women’s families are made vulnerable by ser-vice shortfalls, the critique offered by this research falls short for disabled women and theirchildren. The resulting policies and programmes are not only doomed to fail mothers, but theyleave them open to heightened scrutiny and negative family intervention.

Thus, it is important to expand our theoretical framings of disability to include genderedinequalities and to accommodate a research approach that takes women’s specifically situatedperspectives into account. Narrative methodologies, taken from the perspectives and experi-ences of people with disabilities, can offer an important counterpoint to traditional formulationsof disabled people as operating from deficit or lack (Jongbloed 2007; Morgan 2001; Reineltand Fried 1998). Drawing on arguments concerning narrative work in the feminist tradition,narrative studies of mothers with disabilities can offer insights into the embodied, interactionalaspects of disability, and can be highly political, by connecting personal narratives with broadersocial structures (Linton 2006; Mairs 1996). Here, moving from individual narratives to thestructures that constrain women, narrative work is able to include traditional materialist con-cerns as well as ‘non-productive’ aspects of living with a disability, such as sexuality, mothering,intimacy and embodiment. If we wish to make the connection between women’s livedexperiences and the institutions and practices that constrain them, it is important – as feministphilosopher Dorothy Smith argues – to begin where women live, and build upward (Smith1990). Playing feminist narrative methods against critical discourse analysis illuminates how alack of acknowledgement for disabled mothering disciplines disabled mothers into an


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individualist, forced self-sufficiency in the current model of family and disability, leavingwomen to fend for themselves, sometimes to the detriment of their own health, and increasingtheir risk of surveillance and intervention. Blending these theoretical and methodologicalapproaches can expose the casual brutality that policy and research omissions impose ondisabled women and their children in deeply critical and crucial ways.

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34

UNDERSTANDINGDISABLED FAMILIES

Replacing tales of burden and resiliencewith ties of interdependency

Janice McLaughlin

Introduction

Family life in the context of disability has been the focus of a significant amount of researchacross a range of disciplines, such as health care studies, medicine, social policy and psychol-ogy. Their focus has been on the burden of responsibility such families face, with anincreasing interest in families who are identified as resilient and on how intervention mightbuild this resilience in others. This approach has been criticised by the disability movement aspresenting disability as both a tragedy and an individual problem for families to manage.

Before mapping out the alternative ways that disability and family are understood withindisability studies (and associated disciplines) it is useful to lay out a few clarifying points. First,what is family? Family is one of those commonplace terms which, because of its everydayuse, tends to miss the complex social processes that lie behind framing it. Without going toofar into the sociology of family, or the anthropology of kinship, it is important to stress thatwhile our most immediate image of family is that of the nuclear family comprising mum, dadand children, who share both biology and a household, we know that this is a social con-struct, however dominant (Carsten 2004; Edwards et al. 1999; Finch 2007; Morgan 1996).Therefore it is important that research exploring ‘family’ does not begin with too manypresumptions of what it is that is being studied, and provides a space for people to definewhat family means to them. Second, in this chapter I will use the phrase ‘disabled families’ toequate to family formations, however constituted, in which at least one member is disabled.In such contexts it is the family as a whole who live and experience disability, although thespecifics of those experiences among the members will vary. The phrasing symbolises theways in which others, formal services, community and neighbourhood respond to the familydifferently in light of disability. Much of the discussion in the chapter will concentrate onissues related to childhood disability, but I will also explore other ways in which disabilityand family intersect.

Third, while advocating a move away from the emphasis on how resilient families copewith burden, I do not want to suggest that disabled families do not face difficulties. Statistical

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data point to the economic difficulties that families face through (a) the extra cost of lookingafter someone who is disabled, either a child or a parent or both (Brekke and Nadim 2017);(b) the removal of family members from the labour force to provide care (Contact a Family2012; Zan and Scharff 2018); (c) the consequences of those in a family who would usually bein the labour market being unable to work due to the difficulties experienced by disabledpeople in gaining and remaining in employment (Magadi 2010; Powell 2018; Tonmukaya-kul et al. 2018); and (d) the lack of sufficient benefits for those unable to work due to dis-ability (Bulman 2017). Families also talk of the difficulties and battles experienced in gettingappropriate support from formal services, while also being concerned about the level ofscrutiny their lives fall under from those services, an issue felt particularly strongly by disabledparents (Swain and Cameron 2003). In addition, work with people who are disabled, be theychildren or adults, has identified forms of abuse and neglect, which they have suffered at thehands of family members and the inadequacy of social services in response. Finally, existingsocial hierarchies, for example located in terms of class or capital (Gillies 2005; Sharma 2002)and ethnicity (Chamba et al. 1999; Shah 1995), have inevitable consequences for access toresources and support for families.

The chapter is divided into three sections that represent core issues within disability studiesresearch on family. The first outlines the problems with focusing on the individual capacityof families to cope with disability due to their resilience. The second section explores the sig-nificance of medical therapies and treatments in the lives of disabled families. The final sectionlooks at the meanings associated with care and the value of recognising the interdependencieswhich lie at the heart of all family life for challenging the social and institutional marginalisationof disabled people.

Disability as a burden and resilient families

An online search for information about disability and family will produce an array of workfocused on and framed around burden (just a few examples include Courtney et al. 2018;Dovgan and Mazurek 2018; Lovell 2018; Partington 2002). Much of this research hasfocused on identifying the coping strategies and characteristics of those families who are mostable to deal with the difficulties associated with a disabled child (Malhotra et al. 2018; Yu et

al. 2018). In recent years ‘resilience’ has become the dominant metaphor for families who areable to manage life with a disabled child; within health psychology various measures havebeen created to break down what resilience is and to identify the kind of family relationshipsthat are most able to display such properties. For example, Giallo and Gavidia-Payne (2006)use McCubbin et al.’s (1996) Resiliency Model of Family Stress, Adjustment and Adaptationto indicate what they argue are the types of family characteristics that enable people to adjustto the challenges of raising a disabled child.

It could be argued that research accounts of families doing well in the context of raising adisabled child is a good thing; one that recognises the agency of families to adapt and becomestronger in the context of disability. Nevertheless, there are problems with the dominance ofthis way of conceptualising family life in the context of disability. First, there is a risk thatfamilies judged not to be resilient will be seen as being at fault. If some can manage, whycannot others? Second, while much of this research claims to be interested in the contexts offamily life that can influence people’s ability to show resilience, what is meant by contextis often different types of family relationship and behaviour, rather than the material andinstitutional location within which a family lives. Third, such explanations easily fall intostereotypes and assumptions. Take, for example, the wonders of the British Asian extended

Understanding disabled families

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family and the way in which they simply absorb caring responsibilities (Katbamna et al. 2004).Or, in contrast, assumptions that disabled parents or a single parent household will be unableto cope. Such assumptions are problematic because they do not reflect the social realities ofany of these groups’ lives. It is not necessarily the case that within an Asian family contextthat there is an extended family ready and waiting to take on such responsibilities (Ali et al.2001). Nor should it be assumed that a disabled parent or single parent household cannotcope, or that they do not live within an extended care network, whose members are readyand willing to assume caring activities (Traustadóttir and Sigurjónsdóttir 2008). Fourth, thefocus is on the non-disabled person and their trials and tribulations, and this places the dis-abled person as other to the family. Finally, the analysis remains trapped in an understandingof disability as pathology – something external – which befalls a previously so-called perfector innocent family who must learn to accommodate the disabled person.

What becomes invisible in such accounts are the social contexts that produce burden andthe significance of multiple forms of capital and resources, in supporting some to be moreresilient than others (Brezis et al. 2015; McKeever and Miller 2004). What families talk of asburdensome in their lives is not the disability that they or a family member has, it is thebattles with social services and health care providers to obtain adequate and appropriate sup-port provision. Such battles have only increased in the past decade for families in the UnitedKingdom and elsewhere. This is due to the ongoing era of welfare and economic austerity,which has seen greater numbers of children fall into poverty (Social Metrics Commission2018), adults face living on low wages in precarious employment (Dagdeviren et al. 2017;Rubery et al. 2018) and ever shrinking welfare benefits. Disability has been particularly tar-geted for welfare cuts; take, for example, the replacement of Disability Living Allowancewith Personal Independent Payments, which has involved far tighter criteria; the removal ofthe Independent Living Fund; and the introduction of the Bedroom Tax, which meansfamilies lose housing benefits due to their requirement for additional bedrooms to accom-modate the technology and specific needs of their disabled member(s) (Flynn 2017; Mills2018; Pearson and Ridley 2017; Power and Hall 2018). The withdrawal of benefits has alsobeen linked to a media-driven narrative that disabled people are welfare scroungers who takefrom those willing to work; a narrative that has contributed to increased levels of hate crimeagainst disabled people and their families (Burch 2018; Hughes 2015; Power and Bartlett2018). In 2016 the United Nations Committee on the Rights of Persons with Disabilitiesfound that the welfare changes in the UK meant that the state was now in violation of theConvention on the Rights of Persons with Disabilities (Committee on the Rights of Personswith Disabilities 2016).

As discussed above the burden literature produces a sense that the disabled child is anintrusion into what otherwise would be a productive and happy family life. Such anapproach is exemplified in the literature on siblings of disabled children or children of dis-abled parents. Here again the dominant voice and concern has revolved around non-disabledchildren whose lives are disrupted by having a sibling or parent who is disabled. In bothscenarios common issues are that such children have to grow up too quickly; their lives arecentred around caring for others; they grow up resentful of the way in which having a dis-abled parent or sibling means that they are not given enough attention and instead lead livesof isolation because things such as going on holiday or having friends come to the house arerendered impossible (Cuskelly and Gunn 2006; Giallo and Gavidia-Payne 2006). It would bewrong, as before, to suggest that such problems do not occur, or that it is untrue that non-disabled children who grow up around disability may feel a sense of loss when they comparetheir childhood to that of others (Heaton et al. 2005; Hodapp et al. 2005). But this is not the


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only element of the story and the only people to be concerned about. Research withchildren themselves, disabled and non-disabled, produces a different picture of whatgrowing up in a context of disability within one’s family also provides. For non-disabledsiblings or children of disabled parents, their experiences can also be positive as they growup with different priorities, interests and world views on disability and the value of being incaring relationships with people who are ‘different’ (Canary 2008; Guse and Harvey 2010).

By considering the perspectives of disabled siblings, we realise that earlier work gives theimpression that only non-disabled children can be siblings. Disabled children are siblings too,siblings who can have a positive influence on the lives of others in the families they are part of.Anthropological literature exploring sibling relationships between disabled and non-disabledsiblings has done a better job of considering how siblings become part of each other’s lives,supporting each other, changing each other, and carrying those relationships (positive andnegative) into adult life (Davis and Salkin 2005). Crucially, what this research also points to isthe importance of doing research with the children themselves (Balen et al. 2006; Garth andAroni 2003; Marchant 2004), in order to find out what they define as being significant tothem, what influences their world views, and what they see as the key areas that affect theirlives, negatively and positively.

The search for cure or therapy

There is substantial research literature which highlights how parents with a child who isdeveloping or behaving differently will seek medical explanations and treatment. This isparticularly marked in areas such as attention deficit hyperactivity disorder (ADHD) andautism spectrum disorder (ASD) (Bull and Whelen 2006; Singh 2004), where both thediagnosis and some of the relevant treatment options (in particular the use of medication tosubdue behaviour and mood) are highly contentious within disability groups. Research hasexplored why parents may seek ‘normalising’ surgery for their children, for example leglengthening in the case of restricted growth, or facial cosmetic surgery in the case of Downssyndrome (Hansen and Hansen 2006; McGrath 2001; Thiruchelvam et al. 2001; Woodgateand Degner 2004). Parents often frame such strategies in their quest for some kind of nor-mality. However, there is a wide debate in disability studies and medical sociology as towhether medical diagnosis and therapy, while obtained in an effort to help the child, alsocontributes to emphasising their difference and medicalising their identity (Blum 2007;Conrad and Potter 2000; Gillman et al. 2000; Hedgecoe 2003; McLaughlin and Goodley2008; Rapp et al. 2001). Some researchers have also argued that parental decisions to agree tosurgery for their disabled child can emerge out of their own discomfort with disability(Ouellette 2010).

A particular contemporary focus on research on medicine, disability and family is theincreasing scope of genetics in the categorisation of childhood difference. This is a mode ofcategorisation that, given its interest in inheritance (although not all genetic traits are inher-ited (Dimond 2014a)), can also be a source of framing the family as different as well as thechild (ibid. 2014b; Latimer 2013; Featherstone et al. 2006). This increasing interest is due tonew technologies and diagnostic practices that are increasing the range of genetic traits,which are being associated with variations in childhood development (McLaughlin 2018).Medical sociology and anthropological research on paediatric genetics argues that familiesengage with genetic investigations of their children in a quest for medical answers, whichthey believe could be socially useful, to the puzzle of their child’s unusual development, and/or to aid making decisions about future reproductive choices (Fitzgerald 2008; McLaughlin


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and Clavering 2011, 2012; Raspberry and Skinner 2007). Genetics does not necessarily dictatehow a child is understood as different (which is sometimes referred to as the geneticisation oflife (Finkler 2001)); instead, important lived connections of family and kinship influence howpeople, including children themselves, engage with the explanations that genetics provide(Clarke 2013; McLaughlin 2014). One area of concern is whether identifying genetic foun-dations for categories such as ASD and the increasing availability of genetic testing technol-ogies (including in the near future gene editing) of eggs, embryos and fetuses will lead tofewer people being born with the characteristics associated with those diagnostic categories(Buchbinder and Timmermans 2011). Prospective parents are potentially being asked topolice the ‘quality’ of future populations and setting new boundaries around the category ofnormality (Boardman 2017; Fitzpatrick 2001; Ouellette 2015; Thomas 2017).

The pressure on prospective parents to police the quality of the future populations canbe tied to contemporary pressures on parents to raise the right kinds of future citizens.Parents in the global north are under a heightened gaze through increased levels of medicaladvice and guidance on how to raise perfect children: the more this is emphasised andwished for, the more parents of disabled children and the children themselves areconstructed as failures (Landsman 1999; Larson 1998; Rigazio-DiGilio 2000). Parents arefailures both via the assumption that they must have done something wrong to producethis disabled child, including not terminating a fetus identified with a congenital condition,and also to have produced a child, which it is assumed, will not be able to grow to be asocially useful citizen (McKeever and Miller 2004). As such, disabled families can findthemselves falling in to the same ‘problem’ categories of other ‘troubled’ families, such assingle parent households, or ‘workless/workshy’ families – multiplied if they also sharethose characteristics. Various research in both disability studies and medical sociology hasexplored the contemporary social interactions which stigmatise disabled families as beingoutside the norm (Farrugia 2009; Francis 2012; Thomas 2014). The stigma associated withbeing a troubled family due to disability and other social characteristics can encourage adesire to appear normal through shaping the child and the family as a whole to matchsocietal expectations.

However, this is not to say that parents and other family members never resist expectationsthat they should strive to achieve normality, whether through medical interventions or otheractivities. Research with disabled families has provided many examples of families recognisingtheir children outside of medical and societal expectations, and of finding new ways to be afamily that incorporate the child’s identity and agency into what they value and celebrate(Goodley and Tregaskis 2006; McLaughlin and Goodley 2008; Taylor 2000). In a counter-point to the notion of burden, here the disabled child brings something of value into thefamily which changes it and signals their centrality and importance to the lives they are partof. This can lead parents to become more exacting about which medical interventions andappointments they feel it necessary to attend; in so doing, they seek to reclaim their child andprovide space for his or her development to occur more freely. Rejection of certain medicalpractices can be understood as elements in ongoing processes of redefining family life in thecontext of disability (Frank 1995; Jenks 2005; Taylor 2000). It is also important to avoidseeing the inclusion of all medical therapies and treatments as necessarily problematic. In thecase of some long-term and degenerative conditions these treatments can be absolutelynecessary in keeping the child alive, in providing an improved quality of life and enabling thechild to grow up into adulthood. This is most clearly seen in conditions such as cystic fibrosisand Duchene muscular dystrophy where improved medical intervention, alongside bettersocial care, are clearly significant in the improved quality of life and increased lifespan of


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people with these degenerative conditions. The reality for many disabilities is that medicine ispart of life, and the social and political implication of this for disabled families is to ensurethat this involvement does not become the key factor in shaping the person’s life and iden-tity, or that of those around them, and that medical actors do not become too powerful indictating the choices and experiences of that person and family (Larson 1998).

Some of the technologies which families have to learn to use to enable a disabled personto be at home, particularly technologies which aid breathing or eating, are intensive andintrusive (Heaton et al. 2005; Place 2000). However, work influenced by social studies oftechnology also highlights how over time, families, both the disabled and non-disabledmembers, work together to minimise the disruption and dominance caused by medicalinterventions or therapies into their lives and spaces of intimacy. In such processes they canalso seek to positively incorporate such interventions and technologies, which do not denytheir presence or benefit, into their lives. This understanding is beneficial for the recognitionit provides of the agency of disabled users of such technologies and interventions inresponding to them and not being dictated by them.

Care and interdependency

Care is a problematic category in disability debates. Feminists have rightly been criticisedfor being solely bothered by the gendered division of labour within the ‘burden’ of carewithin families. While fundamentally important to feminism in the 1970s and 1980s (Finchand Groves 1983; Land 1978; Ungerson 1987; Ungerson 1990), and an important chal-lenge to state approaches to depositing care responsibility onto the family (for the most partwomen, particularly in regard to the care of children and older relatives), this work wasproblematic in the way that it approached disability. In addition, via the significance ofcharitable organisations in ‘caring’ for disabled people, care is sometimes framed as an act ofcharity. Disability writers have pointed out that the language of charity is inappropriate; inparticular, how it acts to disallow the sense that the disabled person has a right to query thecare they receive (Hughes 1999; Lindemann 2003). Charitable caring for Hughes ‘mobi-lised the emotions invested in the tragic and the pitiful’ (2002: 577), while Kittay suggeststhat care is understood not as a right but instead is provided ‘out of a gratuitous kindness, akindness they have no right to demand’ (2002: 271).

While acknowledging these concerns, I would argue that in the context of understandingthe lives of disabled families, care is both something to be interrogated and also reclaimedfrom its problematic associations (McLaughlin 2006; Traustadóttir 1991, 1999). This can bedone by understanding the relationship between care and subjectivity, politics and inter-dependency. Without denying the problems found in feminist work, there is much in con-temporary feminist explorations of care within and outside family that is of value here. Stillpivotal in such work are the arguments of Finch and Mason (1991, 1993). They propose thatthe processes through which women become the predominant carers involve ‘negotiations’within families; negotiations which often leave women with the least socially acceptableexcuses to leave care to others outside or inside the family. For many women, the role ofcarer gives them value and appreciation, providing them with a socially acceptable identity,which is not available elsewhere:

People’s identities are being constructed, confirmed and reconstructed – identities asa reliable son, a generous mother, a caring sister or whatever it might be … If theimage of a ‘caring sister’ is valued as part of someone’s identity then it eventually


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becomes too expensive to withdraw from those commitments through which thatidentity is expressed and confirmed.

(Ibid. 1993: 170).

Such contexts that lead to women being seen as the natural carers and women adopting suchidentities do appear particularly marked in the care of disabled children. When mothers areasked to provide key roles in the day to day treatments and therapies for their child, this isbased on their presumed inherent ability to care. Over time this becomes part of the pro-cesses that consolidate the gendered division of care. The expertise that mothers develop intreating and supporting the child leads them to continue to be seen as the obvious carers fortheir child, which excludes others from participating in those activities.

However, such assumptions and identity dynamics are not the same when the mother isdisabled. Instead, whether the child is disabled or not, the first response by formal servicesand often others is to assume that the mother will lack the core skills that others must pro-vide, justifying significant scrutiny of her and her relationship with her child (Berman andWilson 2009; Booth and Booth 1994, 1997, 1998; Booth et al. 2006). This is not to say thatlike all mothers disabled women would not benefit from support and advice; the problem isthe way that assumptions tied to their disability impose readings of their mothering as inevi-tably lacking (Coren et al. 2010; Llewellyn 1995; Llewellyn 1997; Llewellyn and McConnell2002). In such contexts it is difficult for the disabled mother to define what kind of supportshe would benefit from and to set the boundaries as to when it is legitimate for others toquestion her parenting skills (Parton et al. 2018). Increasingly, however, research is includingan appreciation of the ways in which disabled parents ‘can be assisted to live successful familylives in the community’ (Traustadóttir and Sigurjónsdóttir 2008: 331).

The assumptions made about non-disabled women as carers and about disabled women asinadequate carers take us towards a consideration of the politics of care. There are a variety ofways to bring politics into the discussion of care. One is the significance of a variety of socialdiscourses embedded in gender, class, disability, age, and race and ethnicity in framings ofwho can and cannot care. Another point that I wish to discuss here is considering the contentand boundaries of care (McLaughlin 2006). In some instances parents, both mothers andfathers, bring political activity linked to their involvement in campaigns fighting the injusticesdisabled children face in broader society into their understanding of themselves as carers oftheir children. Caring does not need to exist only within the private realm; indeed, challen-ging that boundary is connected to challenging care as a gendered activity. Drawing in publicdisputes over inequality and injustice into something care should be involved with produces abroader understanding of the relations, experiences, engagement, interdependences andpolitics involved in it (Watson et al. 2004). It also creates a space in which to recognise theagency and identity of disabled people in caring roles, pushing towards a position that blursthe notion that there are those who care and those who are cared for (Fine and Glendinning2005; Lloyd 2000, 2003).

One way to blur the boundaries of who provides care and where it occurs is to framecare as emerging out of interdependencies between people and as an important aspect ofcitizenship (Sevenhuijsen 1998). Linking care to citizenship also acknowledges that part ofthe conditions that enable care to be emancipatory is the social and political contextswithin which it occurs (Williams 2001). From this perspective, evaluating the contextsaround disabled families includes questioning to what degree professional, institutional andcommunity settings provide spaces for the development of affirmative and productiverelationships within them. Without a debate about the responsibility of the state and


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society to provide care, rather than just the family, the privatisation of care continuesunquestioned as does the marginalisation of such families. Where care provision is pre-sented as individualistic, as focused only on the ‘condition’ rather than on the person, as aform of charity and a private responsibility, rather than a public right and entitlement,families remain locked in marginalised positions, which construct them as ‘troubling’ tosociety and enforce the caring role on the mother.

The case of ‘Laughing Boy’ in the UK puts much of this discussion into sharp perspective.Laughing Boy was the nickname used by the family of Connor Sparrowhawk. Connor hadbeen diagnosed with learning difficulties, autism and epilepsy. At the age of 18 he was placedin a supported living facility (called Slade House, run by Southern Health NHS FoundationTrust), where in July 2013 he died from drowning. After his death the unit was closed downhaving completely failed a Care Quality Commission inspection. An inquest in 2015 ruledthat neglect at the facility contributed to Connor’s death. Further investigations found thatthe Trust had failed to investigate 700 deaths of people with learning disabilities or mentalhealth problems in their care. In the early days after Connor’s death the Trust sought tocover up the circumstances of his death as natural causes and at each stage sought to deflectblame from the organisation and the management within it. It was not till 2017 that theTrust accepted full responsibility for his death, provided an apology to the family and pleadedguilty to various charges brought by the Health and Safety Executive. The case has broughtup many issues about the ‘care’ and value given to people with learning difficulties in thehealth care system in the UK and in society. What I want to highlight here is the centralityof Connor’s family, in particular his mother – Sara Ryan – in the events that took place andin the campaign that has been launched since his death (Ryan 2017). Following his death,Connor’s mother and family rejected the hospital’s explanation that Connor had died a nat-ural death; in response, the Trust sought to label Sara as difficult and obstructive. Variousattempts were made to undermine her, particularly in respect to her social media activity. Inresponse, Sara, her family and other people involved in disability politics, many of whom hadchildren with learning difficulties, launched a campaign that sought to hold the Unit and theTrust accountable for Connor’s death. The institutional approach to working with the familyand with Connor prior to his death showed little of the values of interdependency; indeed,all attempts by the family to build a productive working relationship with them were rejec-ted. In response to the tragedy of his death, families turned their personal anger and grief (assimilar stories of deaths in ‘care’ unfolded) into an ongoing political campaign, asking whyinstitutions and society place so little value on those with learning difficulties.

The contrast between the institutional values of care displayed by the Trust and the politicisedversions of care evident in the Laughing Boy campaign bring to the fore the importance ofrecognising how families can be active agents of change and challenge. In doing so, what care isand where it occurs is opened up to a broader emancipatory framework far removed fromquestions of burden or resilience.

Conclusion

This chapter has sought to present aspects of the lives of disabled families that become invi-sible when the focus is only on individual burden or resilience. Instead of a disabled familymember being thought of as someone or something a family has to manage, cope with, adaptto, here I have explored disabled family members as full and valued participants in family life.While the language of burden is problematic we do need to remember the routes throughwhich disabled families are marginalised in society, in particular via the ways in which caring


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responsibilities are naturalised as private and gendered. Instead, we need an understanding ofdisability and family that integrates disabled people into the families they are part of (ratherthan seeing them as an unwelcome intrusion) and integrates family into its social, politicaland cultural contexts. This can occur via recognising ties of interdependency, which refuteclear boundaries between the carer and the cared for, the private and the public, and thedisabled and the non-disabled.

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35

‘I HOPE HE DIES BEFORE ME’

Unravelling the debates about ageing and peoplewith intellectual disability

Christine Bigby

Improvements to health care and the impact of deinstitutionalisation have significantly increasedthe life expectancy of people with intellectual disability, few of whom survived beyond theirearly twenties in the first part of the twentieth century. Most people with mild intellectualimpairment now have a life expectancy comparable with that of the general population and,while differences still exist for people with more severe impairments or specific genetic syn-dromes, the gap between their lifespan and population norms has reduced significantly (Patja etal. 2000). For example, between 1960 and 1995 the lifespan of people with Down’s syndromemore than tripled from an average of 15 to 50 years (Haveman 2004). In Australia, people withmild, moderate and severe levels of impairment can expect to live for 74.0, 67.6 and 58.6 years,respectively, compared with a population median of 78.6 years (Bittles et al. 2002). Increasedlongevity means that adults with intellectual disability are much more likely to outlive theirparents than in previous decades. As suggested by the quote in the title of this chapter, which wastaken from an Australian report, however, parental attitudes towards the extended life course oftheir adult children are often associated with anxiety and fear rather than with celebration andrecognition of potential for new opportunities (Bigby 2000; Keyzer et al. 1997a, 1997b).

The broad goals found in national and international social and disability policies recognisepeople with intellectual disability as citizens with equal rights who seek further choice,autonomy, independence and social participation. For example, ratification of the UnitedNations Convention on the Rights of Persons with Disabilities carries the expectation thatgovernments will take effective and appropriate measures to facilitate participation andinclusion in the community (United Nations 2006: 13). Strategies adopted have includeddeinstitutionalisation, self-directed funding, services that aim to support individualised life-styles, community development to foster inclusive communities and improved access tomainstream services. The advent of middle and old age for people with intellectual disabilityis a new phenomenon, requiring disability advocates, policymakers and practitioners, for thefirst time, to apply these key concepts to the middle and latter part of the life course. Thischapter highlights some of the debates that arise in doing so.

Primary challenges are balancing a focus on the centrality of family in the lives of middle-agedpeople with intellectual disability while not overshadowing individual needs, replicating the rolesplayed by family and friends for those who lack these primary relationships, reconciling tensions

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between the ‘disability’ and ‘ageing’ worlds, navigating the interface of quite distinct servicesystems, and adapting mainstream and disability-specific services to accommodate peopleageing with intellectual disability. While many of the issues raised are similar for peopleageing with other types of impairments, the focus of this chapter is on people with intellec-tual disability. The institutionalisation during their younger years of some of the currentcohort who are ageing and their lifelong co-residence with parents or others distinguishesthem from many other disabled people. The very nature of intellectual impairment adds acomplex layer of issues associated with supporting independence, choice, autonomy anddecision-making that are also fairly unique to this group. The perspectives of people withintellectual disability have not been influential in the wider disability movement due to alack of effective support and adaptation of participatory processes, and issues associated withintellectual impairment have not been widely considered by disability scholars (Chappell1998; Frawley and Bigby 2011). Significantly, however, there is a well-established body ofpolicy and practice research about ageing people with intellectual disability, although heretoo their own perspectives are largely missing (Bigby 2004). In comparison, issues of ageingwith lifelong physical impairments have been taken up more widely by bio-psycho-medicalresearchers than by those interested in social or policy spheres (Kemp and Mosqueda 2004).

This chapter adopts a life course perspective that draws attention to the influence of earlierparts of the life course on ageing by examining ‘how problems, needs and patterns of adapta-tions of older people are shaped by their earlier life experiences and historical conditions’(Hareven 2001: 142). For example, in the case of people with intellectual disability, the influ-ence of earlier opportunities for personal development, quality of health care and lifestyle,formation of social networks and employment are pertinent to the issues that are likely to ariseas people age. They lead to questions such as what experiences might typify middle age in theabsence of career, spouse or children? What relevance do retirement or superannuation policieshave for ageing people with intellectual disability who have never worked? What type ofsupport is necessary to ensure participation in social activities and community organisationswhen an older person has few friends or lacks resources such as transport, or the knowledgeand skills to choose, locate and negotiate access to meaningful activities?

The starting point is the dynamic interaction between the nature of impairment and socialstructures and processes, which leads to questions such as should aged care services targeted atthe ‘old old’, people who are in their eighties, be accessible to people with Down’s syndromein their fifties who are ageing prematurely? Allied to this is the fundamental influence of servicesystems in determining the types of adaptations to ageing that need to be contemplated andlead to questions such as would adaptations to ageing be needed if individualised flexible sup-ports were already a feature of disability service systems? Or should allied health and socialprogrammes that aim to support ageing and which are in place for the general population ofpeople who live in private homes in the community be equally available to older residents withintellectual disability in small group homes in the community or is this ‘double dipping’? Suchquestions are tackled in later sections, but first I focus on a slightly earlier part of the life course,highlighting the almost total neglect of middle age in the intellectual disability literature whichskips from an undifferentiated period of adulthood to old age (see, for example, Brown andPercy 2007; Grant et al. 2010).

Middle-aged – or prematurely old?

Too often middle-aged people with intellectual disability are regarded as being old. Prematureageing that affects some subgroups such as people with Down’s syndrome is wrongly assumed to

‘I hope he dies before me’

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apply to all people with intellectual disability, or those who are middle-aged are thought to be‘old’ because they are simply the oldest participants in a service. Perceptions of premature ageinghave been compounded by researchers who often adopt an earlier chronological age for ‘olderpeople’ with intellectual disability, who at times are as young as 40 years, to ensure sufficientparticipants and to avoid exclusion of subgroups who do age prematurely from studies (Bigbyand Balandin 2004). Such practices have meant that the negative connotations associated withageing have prematurely enveloped people with intellectual disability and masked middleage as a stage in the life course that holds significant possibilities and is worthy of attention inits own right.

The majority of middle-aged people with intellectual disability live with their parents. .The continued parental caring role has been problematised in light of parents’ reducedphysical stamina, juxtaposed with their desire to ‘retire’. Identification of the new phenomenonof ‘older parental carers’ has coincided with the growth of the carers movement, drawingattention to the stress and burden of informal caring more generally and generating pro-grammes to support carers, which some suggest has been disempowering and has divertedattention from the pursuit of services that support the rights and citizenship of people withdisabilities (Fyffe et al. 2011; Shakespeare 2006).

Parental concerns about future safety and security, and who will ‘care’ for their middle-aged son or daughter with intellectual disability have framed people as ‘dependants’, or ‘carerecipients’, whose future must be planned. Parents and service systems alike have beenexhorted to plan for future care, to ensure replacement of parents as lifelong primary carers.The emphasis on future planning has overshadowed a focus on the present, as plans focus ona fixed, static future characterised by security rather than the continuing developmentalpotential of adults to learn new skills or acquire new interests and relationships in middle ageand beyond. Studies about the nature of planning suggest that in many instances middle-agedadults with intellectual disability are not included in discussions about their own futures, andplans are made around rather than with them (Bigby 2000; Knox and Bigby 2007). Seldomhave questions been raised about the viability or desirability of encouraging parents to planfor the rest of their middle-aged child’s life, which may be another 40 or 50 years (Bigby2000). A few programmes, such as that developed by Heller and colleagues at the Universityof Chicago, recognise that planning for the future is not the sole preserve of parents but mustoccur in tandem with middle-aged adults (Heller et al. 2000). An evaluation of training cur-ricula designed to educate and provoke discussion about ageing issues among adults withintellectual disability demonstrated the importance of their involvement. It also illustratedparticipants’ dissatisfaction with their current lives, when they were exposed to the range ofpotential choices and opportunities about their own futures. Significant personal develop-ment does occur when middle-aged people leave the parental home, and one study sug-gested that the most effective type of planning was for a key person able to advocate, respondflexibly to change and support the person with intellectual disability to negotiate support asissues arose, rather than the formulation of more rigid residential plans that might lock aperson into particular long-term arrangements (Bigby 1996).

Possibilities of middle age

Various theoretical perspectives divide the life course into stages; psychological theorists takea developmental or psychodynamic approach to define characteristics, while sociologists usegender experiences, family formation, intergenerational commitments, or relationships towork or wider communities (Erikson 1959; Brody 2004). Most schemas identify specific


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challenges associated with middle age, and the media and pop psychology abound withcomments about the mid-life crisis, when individuals take life-changing decisions aboutwork, relationships and lifestyle. Middle age is the seventh age in Erikson’s eight-stage theoryof psychosocial development, a time when the individual may feel that their life has becomestuck, and tensions between generativity and stagnation arise. Generativity extends beyondthe personal spheres of family and career to include the wider social world where theinvestment of the skills and wisdom gained from life experiences can lead to the creation ofideas and contributions to culture, arts and society (Erikson 1959). Sociological approachessuggest that middle age is a time of change in career direction, family roles and relationships,particularly in respect to parenting and caring. The chronological age span encompassed bymiddle age is perceived as 45–65 years although culture and socio-demographic trendsinfluence the timing and nature of the events or transitions that occur during this period.Until the 1980s, in Western societies for example, middle age was associated with the ‘emptynest’, a time when adult children had departed and couples remained in the family home, leftalone to renegotiate their relationship (Neugarten 1968). Higher divorce rates have changedfor some the need to renegotiate relationships in mid-life, and later marriage, greater access tohigher education and housing inflation have extended the period that adult children remain athome. In twenty-first-century Australia, rather than being a norm for middle-aged couples, theempty nest has become an aspiration to joke about, with adult children being portrayed asnesting in the attic.

Brody (2004) identified the ‘parent care years’ as a period in women’s lives when theyare ‘in the middle’, with caring responsibilities for both children and parents. The absenceof spouse, children or career in the lives of most people with intellectual disability meansthat in middle age they may not confront many of the issues faced by people who haveacquired these attributes of modern life. Many do, however, occupy key family roles andface challenges in negotiating these relationships. Walmsley (1996) and others have identi-fied the reciprocal relationships and interdependence that frequently exist between an olderparent and their middle-aged son or daughter with intellectual disability who lives at home;each is dependent on the other for the continued capacity to remain in the community(Knox and Bigby 2007). It is notable in this context that some research suggests that olderparental carers of middle-aged people with intellectual disability experience less caregivingstress and have greater well-being compared with other caring groups (Seltzer and Krauss1994). Interdependent relationships with parents have more recently been termed ‘mutualcaring’ by the Foundation for People with Learning Disabilities (2010) and, though stillnarrowly conceptualising the potential of people with intellectual disability, this extendstheir identity beyond that of care recipient. This idea of mutual caring highlights the coststo lifestyle and autonomy of interdependent relationships with elderly parents and thechallenge of reconciling conflicting needs. For example, in Bigby’s (2000) study, many ofthe older adults with intellectual disability who had lived at home with parents until middleage seemed to live lifestyles more typical of an older person. They described accompanyingtheir parents to activities and clubs geared towards senior citizens and shared relationshipswith parental friends rather than people from their own generation. They spoke too aboutthe restrictions that living with parents placed on their own lives. One man said, forexample:

I couldn’t have been able to come to functions here or at the church. If I went tothe cricket all day Saturday I’d come home and find mum on the floor and shewouldn’t be able to get any help, she wouldn’t be able to ring up. I just couldn’t get


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away and leave her on her own. I’d have to stay with my mum. I couldn’t do thethings which I would like to do.

(Ibid.: 76)

In a similar vein, Walmsley (1996) suggests that while middle-aged adults provide significantsupport to elderly parents, parents retain control over the life of their adult son or daughter.In Bigby’s study, siblings talked about the protective stance taken by parents and their owndifficulty in challenging this. For example, one woman talked about the way her mother hadregarded her then middle-aged brother, ‘Phillip’s her little boy … mother was too dominant’(Bigby 2000: 116).

Little thought has been given to the self-identity of middle-aged people with intellectualdisability or to the potential contribution they could make to their communities. In Australia,where the employment rates of adults with intellectual disability are decreasing (AIHW2008), their primary form of occupation is likely to be supported employment, or attendanceat a segregated day programme. The anecdotal accounts of middle-aged people dropping outby refusing to attend day programmes hint of the stagnation that attendance at such pro-grammes over many years may bring to people’s lives. Work, the self-advocacy movement,peer education and mentoring programmes, volunteering in community organisations andparticipation in inclusive research groups, though seldom including more than a small min-ority, all provide examples of opportunities for people with intellectual disability to use theirlife experiences in creative, meaningful ways to make a wider contribution. Drama groupssuch as that described by Hall (2010) or arts programmes similarly provide opportunities forcreative contributions and inclusion as part of a wider arts community. In families, forexample, potentially new roles exist for single middle-aged members, such as that of thefamily maiden aunt (made famous by Australian folk singer Judy Small) whose relationshipwith nephews and nieces can be unencumbered by parental authority or responsibility.

The grey literature from the United States, Canada and the United Kingdom holds manyexamples of the success of person-centred planning and middle-aged people with intellectualdisability being valued members of community groups, or with a network of acquaintancesand friends with whom they have reciprocal relationships (O’Brien and Lyle O’Brien 2002;Wightman 2009). Such examples, however, are usually the exception that flourish with well-resourced family support, but which for many, especially those who have lived in institutions,is absent. Evidence is beginning to indicate that more formal person-centred planning alonehas little impact on the formation of social networks (Robertson et al. 2006). Recent statisticsabout the social isolation and the continuing ‘distinct social space’ occupied by middle-agedadults with intellectual disability raise the importance of exploring strategies by which net-work building or construction of circles of support might be replicated for those withoutresourceful families (Clement and Bigby 2009; Todd et al. 1990). For example, Australianstudies of middle-aged people with intellectual disability have found that 62 per cent ofresidents in group homes had no one outside the service system who knew them well (Bigby2008a) and only 28 per cent of residents had weekly contact with a family member, friend oracquaintance without intellectual disability outside their home in contrast to 96 per cent ofthe general Australian population (Bigby et al. 2011b). The absence of robust informal rela-tionships for many middle-aged people with intellectual disability through which self-identityand self-esteem can be gained or that act as a vehicle for social participation, poses a sig-nificant challenge to the disability system to make the ideal of generativity, social inclusionand contribution a reality for more than a small minority of middle-aged people. Suchattributes are also fundamentally important as the foundations for a good old age.


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Old age – double jeopardy

Aspects of old age, like other parts of the life course, are socially constructed. Expectationsabout retirement and the participation of older people in family, work and social roles differbetween culture and historic time, mediated by prevailing economic conditions and demo-graphic trends. For example, mandated and different retirement ages for men and women incountries such as Australia disappeared as anti-discriminatory legislation strengthened; earlyretirement as a solution to unemployment and technological change in the mid-1980s hasgiven way to expectations of an extended working life and a rise in the age criteria for statepensions; efforts to reduce the welfare state have led to self- rather than state-funded retirementand the growth of private superannuation. Theorising about the sociological nature of ageinghas changed dramatically since Cumming and Henry (1961) considered disengagement to be acore element and Butler (1975) identified ageism and the poverty, isolation and illness thatcharacterised experiences of ageing in the United States.

The earliest writing about the ageing of people with intellectual disability, dating back to themid-1980s, reflected the contemporary social attitudes of that time towards ageing and warned ofthe double jeopardy they faced, as negative and devaluing attitudes towards people withdisabilities were compounded by similar attitudes towards older people. MacDonald and Tyson(1988) referred to the ‘deca-jeopardy’ faced by older people with intellectual disability asmembers of multiply disadvantaged groups, the ‘aged’, ‘disabled’, ‘poor’, ‘women’ and ‘sociallyisolated’. Wolfensberger (1985) discussed the challenges of applying the theory of social rolevalorisation and the risks of replicating for older people with intellectual disability the devaluedstatus of older people in the general community. His writing questioned the application of normssuch as retirement, which he saw as stripping people of key identities and roles. He proposed thatthe lifestyle of the rich and famous should provide the valued role model for people with intel-lectual disability rather than the lives of ordinary older people. He and others drew attention tothe philosophies and approach of aged care services that were diametrically opposed to those ofdisability services, by providing ‘care’ rather than ‘support’, fostering ‘dependence’ rather than‘independence’ and continuing ‘segregation’ rather than ‘integration’. Such factors, together withthe relatively poor quality of aged care services compared with disability services and the alreadydevalued status of people with intellectual disability, were seen to heighten their risk of usingsuch services. It was suggested too that people with intellectual disability would be alienated byother older service users, who, with their own self-image already under threat, would regardproximity to people with a lifelong disability as a further assault on their status.

Empirical evidence for the relative merits of the aged care and disability systems was providedby several early UK studies that illustrated the diminished opportunities for participation andengagement that aged care services offered to older people with intellectual disability (Moss et al.1992; Walker and Walker 1998). While the jeopardy of using aged care services was uncovered,research also identified the inherent ageism of disability services, illustrating the dangers of beingprematurely labelled as older. Walker et al. found that in disability services, older participantswere given fewer opportunities, despite in some instances having lower support needs than theiryounger, more severely disabled counterparts, and concluded:

if older people with intellectual disability are to have positive futures, then as anessential starting point, the implicit age discrimination that regards older people withintellectual disability as having lesser needs than younger ones should be tackled rootand branch within all service provision agencies.

(1995: 241)


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Strong messages from this early writing were the need to change and adapt the intellectualdisability system to take account of ageing people, the potential advantages of remaining inthe disability service system and the dangers of using aged care services. Since then, debatehas continued about how needs should be met and by which system, but in a context ofchanging aged care policies and services.

Reformulating old age

Over the past 20 years the proportion of older people has increased in Western societies andtheir number continues to be swelled by the baby boom generation. This growth has beenaccompanied by reformulation of theories about old age and policy reform, resulting in greateralignment between the philosophies of aged care and disability sectors. More recent theoriesabout ageing have a much more positive spin, framing it as having the possibility of being‘successful’ or ‘active’ (Rowe and Kahn 1998; WHO 2002). The concept of ‘Active Ageing’,founded on the United Nations’ principles of the rights of older people (independence, parti-cipation, care, self-fulfilment and dignity), exemplifies this shift (ibid.). It promotes ActiveAgeing as ‘the process of optimizing opportunities for health, participation and security in orderto enhance quality of life as people age’. This is very similar to the emphasis in disability policyof rights, participation, choice and inclusion. Both sectors have adopted new service modelsbased on person-centred care and planning and individual self-directed services (Nay and Gar-ratt 2009). Differences remain, however, in the extent to which aims are realised in frontlineservice delivery, and residential aged care services are significantly larger than supportedaccommodation services in the disability sector (AIHW 2009). Despite facing similar structuralissues, such as discrimination, differences continue in the way these are framed, which in turnaffects where advocacy efforts are directed. Issues are perceived at a more personal and indivi-dual level by the ageing sector while the disability sector has a stronger focus on social structuralfactors (Priestley and Rabiee 2002; Gibson and Grew 2002).

There are different perceptions of what constitutes ageing and who is an older personbetween the two sectors, which has implications for access to services. In Western countries,it is the over-80-year-old group who have experienced the most rapid expansion in recentyears, and the greatest age-associated changes to biological and health status occur after theage of 75 years, when the prevalence of chronic disease and other disabling health conditionsincreases quite dramatically. Reflecting this standard trajectory of chronological ageing, inAustralia and elsewhere, the bulk of the aged care system is focused on the frail aged, andeligibility criteria are normally set at 70 years (AIHW 2009).

In contrast, as suggested earlier, disability service providers tend to prematurely labelpeople with intellectual disability in their forties and fifties as old, often associated withreduced expectations of capacity and development and assumptions that health problems aresimply related to ageing. Chronological demarcation of old age for people with intellectualdisability is complicated by their diversity. Most older people with intellectual disability donot age prematurely although some subgroups have a unique pattern of ageing. Someexperience age-related disorders relatively early, or acquire additional health needs associatedwith the progression of secondary impairments, chronic health conditions or the con-sequences of a lifetime of poor-quality health care. People with Down’s syndrome, forinstance, have higher prevalence and earlier onset of age-related sensory and musculoskeletaldisorders resulting in additional disability as well as having the exceptional risk of developingdementia in the sixth decade (Holland 2000; Torr et al. 2010). Higher age-specific mortalityrates mean that most people with more severe and multiple impairments do not live to old


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age and, as a result, older people with intellectual disability are predominantly the ‘youngerold’ in their sixties and seventies, rather than the ‘old old’ in their eighties. They are the‘healthy survivors’, who as a group have milder impairment levels than their younger peers.

The life experiences of people with an intellectual disability mean that ageing occurs from aparticularly disadvantageous position. After the transition from parental care in mid-life, andperhaps a period of co-residence with siblings or a more independent option, a high proportionof older people with an intellectual disability live in disability-supported accommodation,where it is more complex to adapt to age-associated changed support needs than in a privatehome. As a result of lifelong unemployment, most older people have no superannuation, arereliant on a state-funded pension for income, and have limited wealth to enable the exercise ofchoice or access to private health systems. As well as the possibility of health-related compli-cations that arise from genetic conditions or secondary impairments, the health of older peoplewith intellectual disability may be compromised by an unhealthy lifestyle during their adultyears. They have much higher rates of obesity, nutritional problems and cholesterol and lowerrates of physical activity and exercise than the general population. Potentially these all increasethe chances of later-life diseases such as diabetes, hypertension, heart disease and arthritis (Bigby2004). When parents die, siblings are likely to be the closest relatives of people with intellectualdisability and the limited informal support networks they carry over from middle age will haveconsequences for well-being in terms of social relationships, inclusion and availability of advo-cates. All these factors exemplify the significance of access to quality health care and othersupport services to enable people to age well.

Adapting services to age-associated change

As people with intellectual disability age they continue to need many of the services theyhave used previously, such as aids and equipment, accommodation, advocacy and supportwith participation in purposeful activities. Age-related changes may mean that the nature andintensity of the support required changes; for example, physical modifications to reflectreduced mobility, more intensive health monitoring or night-time support. Issues arise aboutthe source of resources necessary to intensify support, whether adapting to age-relatedchanges will alter too radically the original intent of a disability service, such as a grouphome, and the potential impact on other service users. Some types of service, such as voca-tional, may no longer be required. The need for new types may arise, such as geriatric healthcare, dementia assessment, allied health and leisure or volunteering programmes. This type ofservice will already be available in the mainstream health, aged or community care systems.Issues arise, however, about access, quality and responsiveness of mainstream services topeople with intellectual disability who may need access at an earlier age, and may fall outsideeligibility criteria on the grounds of age or already be receiving disability services.

Despite many of these issues being flagged by researchers and advocacy groups for the past20 years they have not been resolved at a policy level (Moss 1993; Bigby 2010). Govern-ments have been reluctant to formulate policy that would, for example, articulate reasonableexpectations of support to enable ageing in place, provide funding for partnership initiativesbetween sectors, or agreement about which sector is responsible for additional resourcing.The lack of policy means inconsistency and uncertainty that impacts on their quality of life,places stress on family members, advocates and staff, and means that older people withintellectual disability are often unable to access support appropriate to their needs (see, forexample, Bigby et al. 2011a; Bigby and Knox 2009; Webber et al. 2010a). The lack of policyformulation may be explained by the complexity of designing and implementing policy that


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requires a multiplicity of stakeholders from different sectors – health, disability and agedcare – and the existence of strong drivers in some jurisdictions towards cost shifting betweensectors caused by separate administration of service systems.

Ageing place in group homes: an exemplar issue

In the last decade, in Australia as elsewhere, policies of community care and ageing in placehave aimed to avoid the institutionalisation of older people and provide more supportiveenvironments in their own homes (Howe 2001). Services to support older people to remainin the community have expanded and now replicate in some instances the level of careavailable in residential aged care facilities. Such services, together with tighter entry criteriaand the establishment of assessment gate-keeping services have meant that the average age ofadmission to residential care has increased significantly (now 84 years) along with the leveland complexity of care required by new residents (AIHW 2009).

Mainstream approaches

An application of the principles embedded in disability policy suggests that ageing in placeshould be as applicable to residents in group homes as it is to other older people who live inthe community. A ‘mainstreaming’ model assumes the inclusion of people with intellectualdisability is an integral part of the design of policy and services, and expects that the types ofservices available to others in the community are also accessible to group home residents,complemented by disability services where necessary (United Nations Economic and SocialCouncil 2007). Thus, an older resident of a group home, diagnosed with a chronic healthcondition or dementia, would expect to access geriatric health care or dementia-specificservices for diagnosis, treatment and ongoing management of the condition, as well as aspectssuch as modifications to make their home more dementia capable. In addition, continuingsupport would be expected from the disability system in the form of, for example, a grouphome, which would adapt its programme to take account of things such as increased medicalappointments and interface with hospitals and other health care professionals; retirement fromfull-time attendance at a day programme; changed resident dynamics and compatibility; extraresources such as active night staff and the necessity for frontline and supervisory staff to haveadditional knowledge or access to advice on management of age-related conditions (Fyffe et

al. 2007). Attention too would be given to the accessibility and responsiveness of mainstreamhealth and aged care services to people with intellectual disability and removal of anyrestrictive discriminatory criteria based on age. A small pilot programme in Australia based onthis approach provided ‘top-up’ funding to purchase aged care expertise and health planningfor residents in group homes assessed as eligible for residential aged care and supported agedcare professionals with knowledge specific to working with people with intellectual disability.The validity of this approach was demonstrated by the delayed admission and extendedperiod residents aged in place, as well as the lesser cost to the aged care system than wouldoccur if the resident had moved into residential aged care (AIHW 2006). The logic of thisapproach suggests that if the health and functional capacity of an older group home residentis declining and reaches the stage where they need 24-hour nursing care, they should accessthe care option available to other older people with similarly high health needs which reflectscommunity norms – a residential aged care facility in their local area. If they do so, however,they may still require access to disability services for support with disability-related needs thatare not available within the aged care system; for example, support with decision-making,


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advocacy or to participate in meaningful activities. The aged care facility may also need someadvice and training to enable staff to respond appropriately to a resident with intellectualdisability, which could be provided either from the disability sector or a specialist resourceembedded in the aged care system.

Avoidance of double dipping

The application of a mainstream model described above is obstructed by concern about ‘doubledipping’, which means that an older person with intellectual disability is regarded as either aperson with a disability or an older person rather than both simultaneously or as a citizen(Bigby 2008b, 2010). In the resulting model, the disability system becomes responsible foradapting the nature of its support to older service users, for whom, because they are already inreceipt of substantial government resources, it would be inequitable to provide additionalresources from either the disability or aged care sectors. The strength of this position is evidentwhen the indicative per head figure of £43 for supported accommodation in the disabilitysector is compared with £14–£20 in residential aged care (Thompson et al. 2004). Theassumption of this model, which is common in the UK and Australia, is that disability serviceorganisations should adapt group home programmes from within their existing resources ormove residents out. Multiple adaptation strategies have included changes to the profile of staffskills; partnerships with day programme providers; house modifications; and variations to ser-vice design such as regrouping residents (Fyffe et al. 2007; Wilkinson et al. 2004). The strategicplan developed by the Daughters of Charity in Ireland to adapt its services to the projectedincrease of residents with dementia used strategies such as the establishment of a dedicatedmobile memory clinic to provide regular screening, early diagnosis and clinical support to staff;provision of education programmes for staff, family and peers; and endorsement of organisa-tional standards for dementia care (McCarron 2010). Adaptations occur in a context of littleavailable expertise or responsiveness of mainstream aged care or geriatric health services topeople with intellectual disability, and often restricted access for the ‘younger old’, in theirfifties and sixties, or simply because a person is already in receipt of a disability service.

The frail aged: in place progression or transfer out

It is clear that ageing in place in a group home will not always be the most appropriateoption especially if insufficient additional resources and expertise are available, or if a personrequires continuous nursing, medical care or monitoring. One strategy has been ‘in placeprogression’ where older residents age in place in the wider disability service but move fromtheir home to a dedicated programme for older people as their needs change. Advantages aresuggested to be the capacity to concentrate skilled staff and provide specialist support. Dis-advantages are the dislocation from one’s home, familiar locale and co-residents, and thesegregation of older people often in larger facilities within disability services. Potentially suchstrategies result in the development of large-scale specialist aged care facilities in the disabilitysystem which do not reflect the principles in broader disability policy and lead to premature(re)institutionalisation. In New South Wales, Australia, for example, a 100-bed aged carefacility built as part of an institutional closure programme is now part of the disability serviceinfrastructure (NSW Government 2006). For facilities such as this to remain fully occupiedand economically viable, given the relatively small number of frail aged people with intel-lectual disability, they have to draw potential residents from a large geographic area and haveless stringent entry criteria than mainstream aged care facilities.


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There are some indications that ‘transferring out’ of a group home and the disability servicesystem is a common option for older residents in the UK and Australia (Bigby et al. 2011a;Thompson 2003; Wilkinson et al. 2004). A move to residential aged care can be precipitated bya combination of factors: the degree of change in the residents’ health needs; the impact oftheir changed needs on staff and other residents; the co-existence of other issues that affect theoperation of the home; and the flexibility of resources or success in garnering additional ones(Bigby et al. 2011a). There seems to be no identifiable objective indictor of the level of ‘care’that triggers a move; rather, it is relative to each person’s context and the degree of changeexperienced. Group home residents with relatively low support needs seem to be at higher risk,as the degree of change in their support needs and extra resources required may well be greaterthan residents with pre-existing high support needs, for whom supports such as mobilitymodifications or active night staff are already in place. A major issue of concern is the processesof decision-making about an older person’s move, which has been found to be hurried, madeat times of acute health crisis and have little involvement of the person themselves, their familyor external advocates (ibid.). These findings suggest that, in the case of older people, littleattention is paid to the principles embedded in disability policy, which reinforces the impor-tance of every person having access to an advocate who is external to the service system andfamily members having an awareness of the person’s rights.

Some evidence from both the UK and Australia suggests that people with intellectual disabilitymove prematurely and are often misplaced in mainstream aged care facilities (Bigby et al. 2008;Thompson 2003). As a group they are significantly younger, with lower rates of dementia butstay much longer than other residents (Bigby et al. 2008). Their entry is associated with theinability of other forms of accommodation to continue to provide support, often due to a lack ofresources, the death or ill health of a family carer or a lack of other options, rather than severity ofhealth or support needs. The quality of mainstream aged care facilities differs within and acrossjurisdictions. While a recent Australian study suggests that they might provide better qualityhealth care than is available in a group home, this and other studies suggest that residents withintellectual disability fare less well with regard to social aspects such as community access, parti-cipation in meaningful activity and relationships with friends and family compared either withco-resident peers or age peers in disability-supported accommodation (Thompson et al. 2004;Higgins and Mansell 2009; Bigby et al. 2008; Webber et al. 2010b).

Concluding comments

There is no simple formula to apply to questions about aging in place, given the diversequality of aged care and disability service systems. Establishment of large-scale facilities in thedisability service system that congregate and segregate people with intellectual disability onthe basis not only of their disability but also their age is well out of step with the currentprinciples of disability policy. It is not clear whether the risk of premature institutionalisationand dislocation from place by building large disability-specific aged care facilities is out-weighed by the advantages of retaining older people within the disability service system andthe disadvantages of reliance on mainstream residential aged care facilities if a resident can nolonger be accommodated in a group home. How these issues are weighed up depends on thecomparative quality of facilities in each sector. It can be argued, as Wolfensberger (1985) didin the past, that in some countries mainstream aged care facilities should be avoided at allcosts as the quality remains so significantly below that seen in the disability system and theyrepresent larger-scale institutionalisation than would be found in the disability sector. Amainstream position that seeks the adaptation of disability support services and accessible,


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responsive mainstream aged care services, both community-based and residential, and whichtakes account of the particular needs of people ageing with an intellectual disability, mostclosely aligns with aims of social inclusion and continued community living as the best meansto ensure an optimal quality of life.

Although the number is growing, older people constitute a small proportion of people withintellectual disability and an even smaller fraction of the general ageing population. Such indi-viduals may benefit most from being identified as a middle-aged or older person rather than asjust a person with a disability, and thus benefit from active ageing initiatives for the youngerold and the greater scrutiny and reform of aged care services likely to stem from the growth inthe number of older people. The focus on the need for ‘care’ when parents die, which char-acterises concerns about middle age, and the increased life expectancy of people with intellec-tual disability have dangers that stem from the ‘plasticity of care’ (Baldock 1997). Togovernments and those disconnected from the lives of people with intellectual disability, theparamount issue is likely to that ‘care’ is provided, and as different types of ‘care’ are thought ofas easily substituted for one another, little attention will be paid to its quality, and the extent towhich it reflects the principles embedded in disability policies may remain largely invisible andof little concern. A continuing case must be made that despite age-associated changes, theprinciples and visionary aims of disability policy are as applicable to middle-aged and olderpeople with intellectual disability as they are to their younger peers – the need is much morethan care. These new parts of the life course provide opportunities for people with intellectualdisability to continue the development of their own self-identity and contributions to familyand the wider community. Realisation of these aims requires individualised support, adaptationof service systems, and social and attitudinal change. The overriding aim of advocates andpractitioners alike must be to ensure that mid- and later adulthood is a bonus for people withintellectual disability, by creating a social context and service infrastructure that supports anoptimal quality of life, rather than it being a perilous period as imagined by parents,characterised by the threat of institutionalisation and multiple losses.

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506

INDEX

Abberley, A. 250, 258, 260Abberley, P. 4, 18, 134, 163, 166Abbott, D. 441aberrancy, specification of 53able disabled, non-impaired impaired and 51–2ableism 5, 47, 91, 92, 99, 115, 122, 124–5, 220,

230–31, 246, 344, 367, 398, 428, 495;‘internalised ableism’ 110, 112

ablenationalism, model minority normativities49–52

Abramowitz, M. 470The Absent Body (Leder, D.) 106Abualfaraj, R., Daly, B., McDonald, F. and

Scambler, S. 178Abubakar, I., Aldridge, R.W., Devakumar, D.,

Orcutt, M., Burns, R. et al. 305, 310,314, 315

Abubakar, Ibrahim 313access as right, not privilege 321Access to Work (UK) 257, 259accidental trauma 36–7Accidents of Nature (Johnson, H.M.) 118, 122–3Acker, J., Barry, K. and Esseveld, J. 137activism and independent living 282–3Activity Alliance 392Adam, B. 207, 208–9Adams, Carole J. 125n1ADASS (Association of Directors of Adult Social

Services) 289ADHD (attention deficit hyperactivity disorder)

482; diagnosis as social practice 299, 300Admon-Rick, G. 412Adolffsson, E. T., Smide, B., Gregeby, E.,

Fernstrom, L. and Wikblad, K. 181Adorno, Theodore 372advocacy 46, 59, 75, 80–81, 83, 118, 266, 328,

394, 445, 463; advocacy assistance 243;

animality and disability, relationship between120–23; self-advocacy 159, 162–3

Aesthetic Nervousness (Quayson, A.) 340–41aestheticisation 215affective politics of neoliberal invalidation

240–42‘affective turn’ 90affirmation, problem of 122African Decade of Persons with Disabilities

(2000–2009) 18African Journal of Disability 321ageing, intellectual disability and 12, 492–503;

age-associated change, adaptation of services to499–500; aged care and disability systems497–8; ageing, different perceptions of 498;ageing in place, complexity of questionsconcerning 502–3; ageing in place, mainstreamapproaches 500–501; Australia, AIHW(Australian Institute of Health and Welfare)496, 498, 500; Australia, NSW (New SouthWales) Government 501; challenges 492–3;Daughters of Charity in Ireland 501;Foundation for People with LearningDisabilities 495; frail aged, in place progressionor transfer out 501–2; group homes, ageingplace in 500–502; health care, improvementsin 492; impairment, dynamic interactionbetween social structures and processes, andnature of 493; institutionalisation, problem of502–3; intellectual disability, chronologicaldemarcation of old age for people with 498–9;intellectual disability, life experiences of peoplewith 499; intellectual disability, proportion inageing population with 503; life course stages494–5; life expectancy 492; lifelongco-residence 493; middle-aged, possibilities for494–6; middle-aged, prematurely old or?

507

493–4; national and international social anddisability policies, broad goals of 492; old age,double jeopardy of 497–8; old age,reformulation of 498–9; ‘parent care years’495–6; parental concerns about future safety494; partnership initiatives 499–500;person-centred planning 496; policy andpractice research 493; population norms,reduction of gap between lifespan and 492;self-identity of middle-aged people 496;‘transferring out,’ option of 502; UN (UnitedNations) Convention on the Rights of Personswith Disabilities (CPRD) 492; UN(United Nations) Economic and SocialCouncil 500

agency 34, 38, 82, 93–4, 108, 110, 120, 137,192–3, 194–5, 227, 229, 342; agency-structureproblem 135–6; authenticity and 120;dis/abling agency 405, 413, 415; experientialknowledge and 341; families and 480, 483–4;identity and 32, 485; independent agency,recognition of 38; materiality and 409;personal/individual agency 134, 135, 136, 137,192, 196–7; political agency 274

agenda for change, emergence of 282–3Agent Orange 383–4Aggleton, P. and Thomas, H. 177, 178Aggleton, P., Hart, G. and Davies, P. 176, 178Aguilar, C. 245Ahmed, S. 90, 411Ahuja, Neel 125n1AIDS 104, 176, 177, 407Albert, B. 18, 23Albert, B., Dube, A.K. and Rii-Hansen, T.C.

329Albrecht, G.L. 18, 19, 349, 468Albrecht, G.L., Devlieger, P.J. and Van Hove, G.

308, 309, 313, 315, 316Ali, Z., Fazil, Q., Bywaters, P., Wallace, L. and

Singh, G. 481Aliens Act (UK, 1905) 310Allan, J. 271, 272Allan, V., Smith, B., Côté, J., Martin Ginis, K.

and Latimer-Cheung, A. 391Allen, C. 214Allen, D. 456, 457Allotey, P., Reidpath, D., Kouamé, A. and

Cummins, R. 322, 324Allred, S. 179Alport, Gordon W. 339–40, 342, 344Altman, B.M. 57Alvarez, V. 460Alverdo, F., Chancel, L., Piketty, T., Saez, E. and

Zucman, G. 239Amas, N. and Lagnado, J. 308, 313American Association on Intellectual and

Developmental Disabilities 444

American Education Research Association SpecialInterest Group (SIG) in Disability Studies inEducation 271

American Psychiatric Association 269American Sociology Association 20Americans with Disabilities Act (1990) 75, 133,

377Americans with Disabilities Amendment Act

(2008) 56, 68Anatomy of Disgust (Miller, W.) 99Anderson, B. and Blinder, S. 306Anderson, R. and Bury, M. 20, 175, 177, 178Anderson, R.M. 177, 181Animal Liberation (Singer, P.) 120animality and disability, relationship between 7,

117–25; ableism 124–5; Accidents of Nature(Johnson, H.M.) 118, 122–3; advocacy120–23; affirmation, problem of 122; agency,authenticity and 120; Animal Liberation (Singer,P.) 120; animality, discourses of 124; coalitionbuilding 125; coalition building, advocacy and120–23; coalition building, voice and 119;communication 120; communication,collaboration and 117; developmentaldisabilities 122; disability advocacy 121;disability studies, Scandinavian perspective 119;disability studies, valuation of lives in 117;essentialism, valuation hierarchies and 123–5;ethics, Singer’s assumption on 119; human/animal binary, breaking down of 120–21;humanity, call for acceptance of 118;humanity, loss of 121; humans and otheranimals 118–20; identity formation, Americandisability studies emphasis on 118–19; identitypolitics 119–20; impairment communities122–3; intersectionality, problem of 124;NGOs (non-governmental organisations) 119,122; positives and negatives, importance of121–2; What Is Posthumanism? (Grandin, T.)125n1; Practical Ethics (Singer, P.) 119;Princeton University, Johnson and Singer at117; social demands, gap between individualcapacities and 118; submission, self-loathingand 123–4; Too Late to Die Young: Nearly TrueTales from a Life (Johnson, H.M.) 118; UPIAS(Union of the Physically Impaired AgainstSegregation) Fundamental Principles of Disability(1976) 127, 128–9, 225; valuation hierarchies123–5; WHO (World Health Organization)World Report on Disability 119; Writings on anEthical Life (Singer, P.) 120

Another Disability Studies Reader? Including Peoplewith Learning Difficulties (Goodley, D. and vanHove, G.) 159, 164

Anstey, K.W. 152ANT (actor-network theory) 407–8Anthony, H. and Crilly, C. 257

Index

508

‘anti-oppression’ measures 180–82anti-social benefits 284–5anxiety: age of 93; fear and 211Apelmo, E. 396apheresis 414–15, 416n2Appelbaum, P.S. 82Appiah, K.A. 149Apple, M.W. 276Arab Decade of Disabled Persons (2003–2012) 18Arang-Lasprilla, J.C., Ketchum, J.M., Stevens, L.

F., Balcazar, F. et al. 456Archer, M. 193Archer, M, Decoteau, C., Gorski, P., Little, D.,

Porpora, D. et al. 193Aristotle 353, 355, 431Armer, W.G. 250Armon-Jones, C. 438Arnos, K.S. 152arthritis 172Artiles, A.J., Kozleski, E.B., Trent, S.C., Osher,

D. and Ortiz, A. 456Asch, A. and Fine, M. 421, 422Asch, A., Rousso, H. and Jefferies, T. 468, 469,

471ASD (autism spectrum disorder) 482, 483Asian and Pacific Decade of Disabled Persons

(2003–2012) 18Asimakopoulou, K. G., Newton, P. and

Scambler, S. 181Asimakopoulou, K.G. 175, 181Aspinall, P.J. and Hashem, F. 312Aspis, S. 158, 161, 164assistive technologies 410–11asylum seekers 307Atkinson, D. 131Attitudes and Disabled People:(Finkelstein, V.) 19Audit Scotland 289Australia: AIHW (Australian Institute of Health

and Welfare) 496, 498, 500; Collins Report,Victoria (1984) 277n1; ImmigrationRestriction Act (1901) 310; Migration Act(1958) 310; NAPLAN (National AssessmentProgramme - Literacy and Numeracy) 277n2;National Audit Office 243; National DisabilityInsurance Scheme 288; NSW (New SouthWales) Government 501; ParliamentaryBudget Office 239, 244

authenticity, establishment of 274–5, 277Avery, D.M. 95

Badura, B. and Waltz, M. 177Baistow, K. 131Bajorek, Z., Hind, A. and Bevan, S. 259Bakhtin, Mikhail 97, 339, 341Baldock, J. 503Balen, R., Blyth, E., Calabretto, H., Fraser, C. et

al. 482

Balfe, M. 176Ball, S. 267, 269, 276Bambra, C. 251Bambra, C. and Smith, K. 252Banda, I. 325Banks, M. and Polack, S. 321, 327Bantekas, I., Stein, M. and Anastasiou, D. 77, 81,

82, 83Barden, O. 345Barham, P. and Hayward, R. 192Barker, C. and Murray, S. 339Barnes, C. and Mercer, G. 17, 19, 20, 21, 22,

102, 114, 129, 132, 256, 258, 282, 283, 287,344, 351

Barnes, C. and Sheldon, A. 25Barnes, C., Mercer, G. and Shakespeare, T. 146,

174, 176, 349, 405, 406Barnes, C., Oliver, M. and Barton, L. 19, 21, 23,

267Barnes, Colin xii, 6, 14–26, 129, 130, 132, 133,

134, 146, 222, 223, 224, 257, 259, 344, 406Baron, S., Riddell, S. and Wilkinson, H. 166Barr, B., Taylor-Robinson, P., Stuckler, D.,

Loophra, R., Reeves, A. and Whitehead, M.285

Barsch, Raymond 298Barton, L. 15, 128, 271, 273, 274Bashford, A. and Gilchrist, C. 310Bataille, Georges 96batten disease 182–4Batten Disease Family Association 182Bauman, H.-D.L. 152Bauman, Zygmunt 98, 267Baumberg, B. 254Baumberg, B., Jones, M. and Waas, V. 251Baynton, Douglas C. 309–10, 312, 314BCODP (British Council of Organisations of

Disabled People) 283, 288; social model ofdisability 16, 21

Bê, A. xii, 11, 421–33Beatty, C. and Fothergill, S. 252Beatty, C., Fothergill, S. and Macmillan, R. 252Becker, H.S. 129Bedroom Tax 481Begum, N. 22, 421, 422Begum, N., Hill, M. and Stevens, A. 22Being and Nothingness (Sartre, J.-P.) 96Beitz, C.R. 73Bell, C. 453, 455, 464Bell, S.L., Leyshon, C., Foley, R. and Kearns, R.

400Bell v. Jeffreys (North Carolina Supreme Court,

1852) 381Benstead, S. and Nock, E. 260Bentall, R.P. 190Beratan, G.D. 456Beresford, P. 189, 191, 192, 202, 242, 338

Index

509

Beresford, P. and Wallcraft, J. 191Beresford, P., Nettle, M. and Perring, R. 192Bergson, H. 90Berman, R.C. and Wilson, L. 485Bernert, D.J. 439, 444Bernidaki, E.A. 222, 223Bernstein, B. 270, 277Bernstein, F.L. 379–80Berthoud, R. 252, 253Berthoud, R. and Blekesaune, M. 160Bérubé, M. 338bestowed understandings 267–9Better Lives for Disabled Women (Campling, J.) 20Bewley, H., Dorsett, R. and Haile, G. 256Bhabha, Homi 338Bhaskar, R. 128, 134, 137–8, 193Bhaskar, R. and Danermark, B. 166, 168, 193,

194Bhugra, D. et al. 82Bichard, J.-A., Coleman, R. and Langdon, P. 111Bickenbach, J., Rubinelli, S and Stucki, G. 66Bickenbach, J.E. xii, 7, 24, 55–69, 357Bickenbach, J.E., Chatterji, S., Badley, E.M. and

Üstün, T.B. 57, 64Bigby, C. xii, 12, 492–503Bigby, C. and Balandin, S. 494Bigby, C. and Knox, M. 499Bigby, C., Bowers, B. and Webber, R. 502Bigby, C., Cooper, B. and Reid, K. 496Bigby, C., Webber, R., McKenzie-Green, B. and

Bowers, B. 502Biggs, J. 255Biklen, D. and Cardinal, D.N. 273Bill of Rights in United States Constitution

(1791) 72Billington, T. 368binary thinking, power and simplicity of 36–7Bioethics, Council of Europe Committee on 80biomedical concerns 178–9; fatal flaws of the

dominant biomedical model 190biopolitics: of disability 415; new era of 46The Biopolitics of Disability (Mitchell, D.T. and

Snyder, S.L.) 52Birke, L.I. 135Birth of the Clinic (Foucault, M.) 269Bittles, A., Petterson, B., Sullivan, S., Hussain,

R., Glasson, E. and Montgomery, P. 492Biyanwila, S. and Soldatic, K. 240Björnsdóttir, K. and Svensdóttir, A.S. 158, 162Blackford, K.A. 179, 470Blanchett, W.J. 456Blanchett, W.J., Klingner, J.K. and Harry, B. 457Blaxter, M. 19Blindenmission, Christoffel 330blindness/sightedness, disability studies and 8–9,

219–31; blindness, embodiment of 227–8;blindness, foundations of knowledge about

221; blindness, sightedness and 228–9;collective understandings, concentration on227; critical explanations 226–8; di-visions inknowledge 220–21; disability studies, visionimpairment and 219, 221–2, 231;epistemological politics 220–21; EU (EuropeanUnion) Agency for Special Needs andInclusive Education 225; Greek ‘culture oflight’ 222–3; An Essay on Human Understanding(Locke, J.) 220; International Year of DisabledPeople (1981) 221; language blindness 229–30;medical/individual/psychological explanation223–4; Molyneux problem 220; moralexplanation 222–3; Oedipus, paradox of 223;Philosophy and the Mirror of Nature (Rorty, R.)229; relationality 230–31; restorative solutions223–4; sightedness, blindness and 228–9;sightedness, provisional sense of 220; social andlearned explanation 224–6; social model ofdisability 225–6; vision impairment 219;World Blind Union 225, 328

Bloom, L.R. 178Blum, L.M. 482Blume, S. 406, 407Blume, S. and Hiddinga, A. 406Blume, S., Galis, V. and Pineda, A.V. 412Blundel, R., Meghir, C. and Smith, S. 252Boardman, F.K. 483The Body and Physical Differences: Discourses of

Disability (Mitchell, D.T. and Snyder, S.L.) 338Boffey, D. 115Bogdan, R. 271Bogdan, R. and Taylor, S. 163, 164, 167, 174Boggs, Colleen 125n1Bogner, G. 352Bok, D. 229Bolt, D. xii–xiii, 10, 219, 221, 225, 226, 337–45Bolt, D., Donaldson, E.J. and Miele Rodas, J.

339Booth, T. and Booth, W. 174, 474, 486Booth, T., Booth, W. and McConnell, D. 470Booth, T., McConnell, D. and Booth, W. 485Borg, J., Lindström, A., Larsson, S. 325Borsay, A. 15, 93, 95, 378Boster, D. 381–2boundaries, indistinction of 36, 38Bourdieu, Pierre 168, 183, 213, 214, 215Bowe, F. 19Bowker, G.C. and Star, S.L. 412Boxall, K. 160, 162Boxall, K. and Beresford, P. 345Boxall, K., Carson, I. and Docherty, D. 162, 166BPD (Borderline Personality Disorder) 385–6Bracken, P. et al. 190, 191Bradby, H., Green, G., Davison, C. and Krause,

K. 316Bradley Report (2009) 190

Index

510

Brady, S.M. 468Braidotti, R. 370Braithwaite, J. and Mont, D. 327, 328Brandon, C. and Bloom, A. 313Brandt, E.N. and Pope, A.M. 58Brantlinger, E.A. 272, 273Braye, S. 244, 394Braye, S., Dixon, K. and Gibbons, T. 392Breeden, C., Olkin, R. and Taube, D.J. 469–70Brekke, I. and Nadim, M. 480Bremer, K., Cockburn, L. and Ruth, A. 440Brexit, independent living and 291Brezis, R.S., Weisner, T.S., Daley, T,C., Singhal,

N. et al. 481Brisenden, S. 15, 281British Journal of Learning Disabilities 159British Sign Language 257British Social Attitudes Survey (2009) 114British social model, Longmore’s critique of 378Brittain, I. and Beacom, A. 391, 393Brodersen, S. and Lindegaard, H. 406, 410–11Brody, E. 494, 495Bronfenbrenner, U. 271Brown, G.W. and Harris, T.O. 190Brown, I. and Percy, M. 493Brown, J. and Powell, A. 250, 252Brown, J., Rawlinson, M. and Hilles, N. 177Brown, N. and Leigh, J. 432Brown, S.C. 64Brown, W. 38, 40, 84Brownridge, D.A. 470Brueggemann, B. 338Brunner, R. xiii, 8, 189–202Brunner, R. and Watson, N. 196Buchbinder, M. and Timmermans, S. 483Buckup, S. 327Bull, C. and Whelen, T. 482Bulletin of the History of Medicine 383Bulman, M. 286, 480Bundon, A. and Hurd Clarke, L. 394Bundon, A., Ashfield, A., Smith, B. and Goosey-

Tolfrey, V. 395Burch, L. 481Burch, S. and Rembis, M. 378Burchardt, T. 195Burchardt, T. and Vizard, P. 196Burchell, B., Day, D., Hudson, M., Ladipo, D.,

Mankelow, R. et al. 254, 255Burdett, E. 344Burke, L. 339Burleigh, M. 15, 468Burlock, A. 471, 473Burns, N. xiii, 10, 305–17Bury, M. 17, 24, 133, 175, 176, 178, 180, 181–2Busfield, J. 190Butler, Judith 33, 338, 339Butler, P. 258, 285, 286

Butler, R. 497Byng, S. and Duchan, J. 212Byrne, D. 251

Cabinet Office, UK 288Cahill, S. and Valdez, R. 177Cahn, S. 385–6California Department of Rehabilitation 302Callon, M. 407Cameron, David 265–6Campbell, F.K. 90, 110, 112, 367Campbell, J. and Oliver, M. 15, 16, 21, 146, 161Campling, J. 20Canada: Disability Studies Association in 453;

ERDCO (Ethno Racial People withDisabilities Coalition of Ontario) 463;Immigration Act (1976) 310; Immigration Actamendment (1902) 310; Immigration andRefugee Protection Act (2001) 312; NationalAction Plan on Disability 463; PALS(Canadian Participation and ActivityLimitation Survey) 69n6; Statistics Canada 471

Canary, H.E. 482Canguilhem, George 49Capabilities Approach: constraints within

199–201; mental distress, social perspectives on195–6, 196–7, 197–9, 199–201, 202;philosophy and disability 358–9; studydescription and findings 197–9

Capurri, V. 460care: cash for care 287–9; culturally sensitive care

provision 457–8; home care services 474;interdependency and 484–6; markets for286–7; personalisation of social care 287–9; seealso independent living

Care Act (UK, 2014.): independent living 289;sport, physical activity and disability 398

Care Quality Commission 486Carew, M.T., Hellum Braathen, S., Swartz, L.,

Hunt, X. and Rohleder, P. 441Carrington, S. and Saggers, B.R. 276Carroll, D., Courtney-Long, E.A., Stevens, A.C.,

Sloan, M.L., Lullo, C. et al. 396Carsten, J. 479Carter, B. 135Cartesian mind/body divide 106Castles, S. 311Cavalieri, Paola 125n1Cavenaugh, B.S., Giesen, M. and Steinman, B.A.

456, 457CBR (community-based rehabilitation) 329–30;

American and Caribbean Network 330; Asia-Pacific Network 330; CAN (CBR AfricaNetwork) 330; developing countries, disabilityin 328, 329–30

CCD (Council of Canadians with Disabilities)463

Index

511

Cerny, P.G. 267CHADD (Children and Adults with Attention

Deficit/Hyperactivity Disorder) 269Chalfant, J.C. 297Chamba, R., Waqar, A., Hirst, M., Lawton, D.

and Beresford, B. 480Chamberlin, J. 191Chandler, D. 73Chapman, R. 162Chapman, R. and McNulty, N. 162Chappell, A.L. 158, 159, 160, 493Chappell, A.L., Goodley, D. and Lawthom, R.

162Chappell, Paul 448Charlton, James I. 19, 23, 328Charmaz, K. 176Chaudhry, V. 237Cheausuwantavee, Tavee 440Chen, S. and Ravallion, M. 23Cheu, Johnson 338China Maternal and Infant Health Care Law 323Chinn, D. 368Choi, P., Henshaw, C., Baker, S. and Tree, J.

470‘choreography,’ concept of 207, 212–13Chorost, M. 150Chouinard, V. 471Chouinard, V. and Crooks, V.A. 471Chown, N., Robinson, J., Beardon, L.,

Downing, J., Hughes, L. et al. 131Christensen, K. and Pilling, D. 289Christiansen, J.B. and Leigh, I. 150Chronic Disease Self-Management Programme

135chronic illness: key themes within sociological

understanding of 176–7; long-term disablingconditions, disability theory and 172

Chronically Sick and Disabled Person’s Act (UK)17

CILs (Centres for Independent Living):independent living 282, 283, 288; social modelof disability 17

CIs (cochlear implants) 149, 150–51citizenship rights 462–3Clare, E. 388, 428, 432Clarke, A. 483Clasen, J. and Clegg, D. 285Clement, S., Brohen, E., Sayce, L., Pool, J. and

Thornicroft, G. 93Clement, T. and Bigby, C. 496Clifford Simplican, S. 73Clough, P. and Halley, J. 90CNN 51coalition building: advocacy and 120–23;

animality and disability, relationship between125; voice and 119

Coleman, L.M. 339

Coleman, R., Loppy, L. and Walraven, G. 325Coleridge, P. 23collective indifference 267collective understandings 227Collins, H. and Evans, R. 406Collins, S. 311Commission of the European Communities

Action Plan (2003) 22commodified time 209common language, dream of 35–6communication: alternative communication

technology, provision of 208; animality anddisability, relationship between 120;collaboration and 117; ‘communicationdisablement’ 212–13; ‘communicationdisablement,’ struggle to overcome 216;communicative capital, speech impairment and211–16; compliance with embodied norms of216; distortions of 210; embodied norms of207–8, 216; opportunities for 206; systematicdistortion of 215

Community Care (Direct Payments) Act (UK,1996) 288

Community Care (Disabled Persons) Act, UK(1996) 288; social model of disability 22

Concept of Dread (Kierkegaard, S.) 91Connor, D.J. 461, 463Conover, P. 177Conrad, P. 295, 299–300Conrad, P. and Potter, D. 482constraint, restraint and 461–2Contact a Family 480containment 439, 461–2contractarianism 357–8Cooper, G. and Huitson, A. 179Cooper, P. 271Coren, E., Hutchfield, J., Thomae, M. and

Gustafsson, C. 485Corker, M. 147, 148, 149–50, 151, 154, 155,

207, 212Corker, M. and French, S. 183, 207, 424, 425Corker, M. and Shakespeare, T. 24, 34, 338, 405Cornes, P. 212Cornwell, J. 178Corporealities: Discourses of Disability (Mitchell, D.

T. and Snyder, S.L.) 338Coulson, J., Napier, M. and Matsebe, G. 324Council of Europe 83, 84n1; Committee on

Bioethics 80; High Commissioner for HumanRights 76–7

Courtney, E., Kiernan, G., Guerin, S., Ryan, K.and McQuillan, R. 480

Couser, G.T. 37, 338CPAP (continuous positive airway pressure)

devices 411Cramer, E.P. and Plummer, S.-B. 458, 459Crenshaw, K. 309

Index

512

Crip Times (McRuer, R.) 47Crisp, R. 354critical avoidance 337critical disability studies, postmodernity and 6,

32–43; accidental trauma 36–7; binarythinking, power and simplicity of 36–7;boundaries, indistinction of 36, 38; commonlanguage, dream of 35–6; critical disabilitystudies, ambitious claims for 41–2; criticaldisability studies, development of 34; DangerousDiscourses (Shildrick, M.) 34; difference,retheorisation of question of 39; disability,category of 34–5; disability, GarlandThomson’s perspective 35; disability, interiorsubconscious meaning given to 40; disability,qualification as 35; Disability/Postmodernity:Embodying Disability Theory (Corker, M. andSkakespeare, T.) 34, 338; disability studies,contemporary scholarship 41; disability studies,critique in, use of 33; disability studies,expansion and development of 32; disabilitystudies, postconventional analytic about 32–3;disability studies, postmodernity and 33;disability studies, progressive transformations ofmeaning in 40; Disability Studies (Goodley, D.)34; disability terminology 42–3n1;discrimination against disabled people 33–4;embodiment, distinction between forms of 37;embodiment, embodied selfhood 39;embodiment, embodied subjectivity 40–41;embodiment, normative forms of, alignmentwith 38; equality, formal structures of 37;human morphology, multiple subdivisions of36; identity politics, seductive lure of 36;independent agency, recognition of 38;interdependence 41; interdisciplinarity 34;morphological difference, engagement with42; ‘otherness,’ recognition of 36;performativity, theory of 39–40; performativityof embodied selfhood 34; personhood,attributes of 34; possibility, transformation ofconditions of 41; postconventional approaches32–3, 34–5, 36; postmodernism, disturbanceand 40; psychosocial imaginary, illusorystandards of 34; reductive universalisation 35;self-becoming 41; sexuality 38; sexuality,disability and 40; sociocultural imaginary 38–9;standpoint theory 39; subjectivity 38;transdisciplinarity 34, 39

critical realism: alternative approach through136–8; broad concepts 193; comparison ofcapabilities approach with 199–201; disabilitystudies and 194; empirical example of use inprimary research on mental distress 195–201;levels of analysis 137; mental distress and194–5; next steps for 201–2; sensibilitytowards, engagement with 201–2

Crock, M., Smith-Khan, L. and Saul, B. 307,308, 316

Cromby, J. and Harper, D. 366Crossley, N. 206, 207, 213, 215, 369Crow, L. 5, 24, 113, 146, 161, 165, 424–5CRPD see UN (United Nations) Convention on

the Rights of People with Disabilities (CRPD)Cullen, D. 226Cullinan, J., Gannon, B. and Lyons, S. 327culture: Cultural Disability Studies Research

Network 339; cultural representations ofdisability 337; culturally sensitive careprovision 457–8; disability and serviceprovision 455–8; study of disability andunderstanding of 344–5

The Culture of New Capitalism (Sennett, R.) 267Culver, D. and Werthner, P. 391Cumberbatch, G. and Negrine, R. 22Cumming, E. and Henry, W.E. 497cure or therapy, search for 482–4Curtis, B. and Vehmas, S. 355Cuskelly, M. and Gunn, P. 481Cvetkovich, A. and Wilkerson, A. 302–3Cvetkovich, Anna 302cystic fibrosis 483–4

DA (Disability Alliance) 15DaDaFest 425Daes, E.-I. 75Dagdeviren, H., Donoghue, M. and Meier, L.

481Dalibert, I. 409Daly, M. and Noble, M. 110DALY (Disability Adjusted Life Year) 322Danforth, S. xiii, 9–10, 266, 295–303Dangerous Discourses (Shildrick, M.) 34Danieli, A. and Woodhams, C. 131, 134Daniels, Norman 259, 357–8Darrow, M. 75Daughters of Charity in Ireland 501Davidson, L. 199Davidson, L., Hoge, M.A., Godleski, L.,

Rakfeldt, J. and Griffith, E.E.H. 196Davidson, L., Ridgway, P., Wieland, M. and

O‘Connell, M. 196Davidson, M. 338, 339Davis, C.S. and Salkin, K.A. 482Davis, F. 295–6, 301–2, 303Davis, K. 15, 21, 24Davis, K. and Woodward, J. 21Davis, Lennard J. 18, 36, 52, 215, 224, 337–8,

341DCIL (Derbyshire Centre for Integrated Living)

17, 21De Beco, G. 79De Jong, G. 15, 17, 23De Waal, Frans 125n1

Index

513

deaf identities in disability studies 8, 145–55; CIs(cochlear implants) 149, 150–51; deaf and/ordisabled 151–2; deaf community, boundariesand diversity 148–50; deaf culture 147–8; deafidentity, boundaries of 149–50; deaf identity,disability theories and 154; deafness, why aD/deaf identity might be special 147–8;deafness and disability, understanding of154–5; disability, experience of, difference and146–7; disability identity, contested idea of145–7; disability studies, D/deaf identities and154; disability studies, difficulties for deafstudies and 155; ethical importance of self-definition 153–4; genetic hearing impairment153; Human Fertilization and Embryology Act(2008) 152; identity politics 146; IVF services152–3, 356–7; legal discourse on disability 155;PGD (preimplantation genetic diagnosis)152–3, 356–7; politicisation of deaf people147; reproductive technologies and deafidentity 152–3; self-consciousness of deafpeople 147; technology, D/deaf identity and150–51; UN (United Nations) Convention onthe Rights of Persons with Disabilities(CPRD) 155, 221, 225

Deal, M. 114Death, US Committee on Joint Causes of (1945)

59Deegan, M.J. and Brooks, N.A. 421deficit model of disability 469–70Degener, Theresia 80, 81DeKoven, M. and Lundblad, M. 125n1DeLamater, J. 438Deleuze, G. and Guattari, F. 41, 53Deleuze, Gilles 41Deming, D. 255Demyttenaere, K. et al. 325depression, collective reframing of clinical

syndrome of 302–3Derrida, Jacques 120, 339DESMOND Collaborative 181Despouy, L. 75determinist essentialism 405–7Deutsch, H. and Nussbaum, F. 338developing countries, disability in 10, 321–31;

access as right, not privilege 321; AfricanJournal of Disability 321; CAN (CBR AfricaNetwork) 330; CBR American and CaribbeanNetwork 330; CBR Asia-Pacific Network330; CBR (community-based rehabilitation)328, 329–30; China Maternal and InfantHealth Care Law in 323; community-basedrehabilitation (CBR) 329–30; culturaldifferences 323; DALY (Disability AdjustedLife Year) 322; development assistance 328–9;disability from global to local 322–3; disabilitystudies, focus of 330–31; education barriers to

participation 326; employment barriers toparticipation 326–7; environmental barriers toparticipation 324; epidemiology of disability322; Federation of Disability Organisations inMalawi 330; Finnish Abilis Foundation 329;Global Burden of Disease study (2004) 322;Global Partnership on Disability andDevelopment 322, 329; health barriers toparticipation 324–5; HIV/AIDS 324, 325;impairment, impact of 322–3; InternationalCentre for Evidence in Disability 330;International Development Department (UK)329; Journal of Disability and the Global South321; MACOHA (Malawi Council for theHandicapped) 330; MDGs (MillenniumDevelopment Goals) 329; negative attitudes,ubiquity of 321; NGOs (non-governmentalorganisations) 328–9, 330; NORAD(Norwegian Agency for DevelopmentCooperation) 329; Norwegian Association ofthe Disabled 330; Norwegian Council onDisability 329; Oriang project in westernKenya 326; participation, barriers to 323–8;poverty barriers to participation 327–8;prevention, priority of 322–3; QuadParaAssociation of South Africa 323; rehabilitationbarriers to participation 324–5; researchcollaborations, need for 331; SDGs(Sustainable Development Goals) 329; SebetaTeacher Training Institute in Ethiopia 326;Sightsavers International 330; social protectionbarriers to participation 327–8; UN (UnitedNations) Convention on the Rights of Personswith Disabilities (CRPD) 321, 322, 323, 326,328, 330; UN (United Nations) GeneralAssembly 329; UNAIDS 322; UNESCO(United Nations Educational, Scientific andCultural Organization) 329; United StatesAgency for International Development 329;UTIs (urinary tract infections) 323; waysforward 328–30; WHO (World HealthOrganization) CBR Guidelines (2010) 330;WHO (World Health Organization) WorldHealth Survey (2011) 325; World BankDisability Inclusion and AccountabilityFramework 329; World Federation of the Deaf328; Zimbabwe Parents of HandicappedChildren’s Association 325

DeVivo, M.J. and Richards, J.S. 442Dhanda, A. 74, 80, 82DHS (Disability, Handicap and Society) 21, 22diabetes 180–82diagnosis as social practice 9–10, 295–303;

ADHD (attention deficit hyperactivitydisorder) 299, 300; California Department ofRehabilitation 302; depression, collectivereframing of clinical syndrome of 302–3;

Index

514

diagnostic construct 295–6; diagnosticconstruct, development of 296–9; Educationof Handicapped Children Act (US, 1975) 298;Illinois Test of Psycholinguistic Abilities 298;interrupting diagnosis 302–3; learning disabilityas neuropsychological condition 296–9;political product of diagnosis 295, 300–302;Rolling Quads at Berkeley 302; scientificconstruct of diagnosis 295; social legitimacy ofdiagnosis 295; social process of diagnosis 295,299–300; Strauss syndrome 298

DIAL (Disability Information and Advice Lines)21

Dickens, Charles 265Dickman, B. 441, 444DIG (Disabled Incomes Group) 15dignity, human rights and 73–4Dijkers, M. 63Dikoumana, Gouma 414–15Dimond, R. 482direct payments, independent living and 287–9direct psycho-emotional disablism 103–5dis/abling borders 413–15disability: administration systems and discourses of

‘burden’ on 315–16; animality and,relationship between 121; biopolitics and state412–13; Bourdieu, application to 213–14; asburden, resilient families and 480–82; categoryof 34–5; cultural locations of 47–8; deficitmodel of 469–70; definitions, models andclassifications 55–9; diagnostic classificationsand 49; Disability, Pregnancy & Parenthood469; disability advocacy 59, 75, 80, 83, 121,357, 463; ‘disability pride,’ concept of 160–61;‘disavowal’ of 103–4; discourses 268;experience of, difference and 146–7; familyand 479; futures of 45–6; Garland Thomson’sperspective 35; global north, representationsfrom 237; global to local perspectives 322–3;historiography of, reformulation of socialmodel and 379; history of, disability studiesand 378–9; human rights settlement, seeds of74; identity, contested idea of 145–7;individual model of 102; interior subconsciousmeaning given to 40; labelling 53; natural andsocial factors in 351; normative concept of352–3; normative examination of 355;philosophical ethics and moral significance of352–7; philosophy and understanding of348–9; policy divergence, areas of 290;qualification as disabled 35; race and migration,intersections of 308–9; “reclassification” of251; service delivery, over- and under-servicein 473–4; social creation of 378; study ofculture and understanding of 339–44; threat of92; time in production of 208; unerlying issueof 467–9

Disability, Gender and Violence over the Life Course(Shah, S. and Bradbury-Jones, C.) 430

Disability: Whose Handicap (Shearer, A.) 19Disability & Society: metanarrative of disability

339; social model of disability 21Disability and Colonialism (Soldatic, K. and Grech,

S.) 430Disability and Rurality (Soldatic, K. and Johnsdon,

K.) 430disability categorisation 6, 45–53; aberrancy,

specification of 53; ability and disability,dissolution of bifurcation of 53; able disabled,non-impaired impaired and 51–2;ablenationalism, model minority normativities49–52; biopolitics, new era of 46; TheBiopolitics of Disability (Mitchell, D.T. andSnyder, S.L.) 52; Crip Times (McRuer, R.) 47;disability, cultural locations of 47–8; disability,diagnostic classifications and 49; disability,futures of 45–6; disability labelling 53;disability rights movement, idealism in purposeof 52–3; Discipline and Punish (Foucault, M.)47, 48; embodiment, ideas of 49; EmotionPictures Disability Film Festival 51;eugenics-driven formula of disability 45–6;Haiti, disability and earthquake-decimation in51; The History of Sexuality (Foucault, M.) 53;‘homonationalism’ 45; homonormativity 50;incapacity, new social standard 48–9; Instituteof Education Sciences in US 46; minoritymodel approach, Puar’s critique of 50;National Longitudinal Transition Study (USDept of Education) 46; ‘natural Man’ 45;neoliberalism, labour productivity and 49;normalisation, micro-technologies of 46–8;oppression, defining nature of 48; ParalympicGames in London (2012) 47; prostheticenhancement 51; social orders of normalisation47; subjection to normalisation 48; taxonomicsocial order, marginalised members of 48;Terrorist Assemblages (Puar, J.) 50; Vital Signs:Crip Culture Talks Back (Harlan Hahndocumentary film) 46, 49, 52–3; X-Men(Marvel Studios film) 51

Disability Discrimination Act, UK (1992) 22,115, 257

disability history, social model and 11, 377–89;Agent Orange 383–4; Bell v. Jeffreys (NorthCarolina Supreme Court, 1852) 381; BPD(Borderline Personality Disorder) 385–6;British social model, Longmore’s critique of378; Bulletin of the History of Medicine 383;disability, social creation of 378; disabilityhistoriography, reformulation of social modeland 379; disability history, disability studies and378–9; Disability in the Industrial Revolution:Physical Impairment in British Coalmining:

Index

515

1780–1880 (Turner, D. and Blackie, D.)380–81; disability studies, history in,indispensable nature of 388–9; disabilitystudies, social model of disability and 377;disabled people as agents in their own lives388; impairment, incorporation into revisedsocial model 387–8; impairment, socialcreation of 379–82; impairment and disability377; impairment/disability divide, challengesof challenging 383–7; impairment/disabilitydivide, moving beyond 378; ‘IntegratingDisability, Transforming Disease History:Tuberculosis and its Past’ (Linker, B. and Abel,E.K.) 382; Ottoman Arab world 386–7;Qu’ran 386–7; social model, fundamentaltransformational thinking about disability in377; social model thinking, fundamentalprinciples of 377–8; sociocultural-historicalmodel of disability, call for adoption of 388;Telethons: Spectacle, Disability, and the Business ofCharity (Longmore, P.) 378; UN (UnitedNations) Convention on the Rights of Personswith Disabilities (CRPD) 377, 481; WHO(World Health Organization) InternationalClassification of Functioning, Disability andHealth (ICF) 377

Disability in the Global South (Grech, S. andSoldatic, K.) 430

Disability in the Industrial Revolution: PhysicalImpairment in British Coalmining: 1780–1880(Turner, D. and Blackie, D.) 380–81

Disability Living Allowance (DLA), shift toPersonal Independence Payment (PIP) 284–5,290

Disability/Postmodernity: Embodying DisabilityTheory (Corker, M. and Skakespeare, T.) 34,338

disability research: condemnation of mainstreamof 129–30; critical realism and 136–8;disability-specific research, disabled mothers in467; problems with 132–4

Disability Rights and Wrongs (Shakespeare, T.) 273disability rights movement, idealism in purpose of

52–3Disability Rights UK 396disability sport 391–6disability studies: approaches to, relationships

between 127–8; contemporary scholarship 41;critical psychological disability studies 367–73;critique in, use of 33; crossroads for 5; culturaldisability studies 337, 338, 339, 344, 345;cultural disability studies, emergence of 337–9;cultural disability studies, feminism and430–32; D/deaf identities and 154; deafidentities in 8, 145–55; different approaches to,co-existence of 5; difficulties for deaf studiesand 155; disabled people’s movement, links

with 3–4; in education, inclusive educationalepistemologies and 271–4; in education,lessons for inclusive education 274; everydayworld and 206–7; expansion and developmentof 32; focus of, developing countries and330–31; foundations of 127; history in,indispensable nature of 388–9; InternationalClassification of Functioning, Disability andHealth (ICF) and 67–8; ‘leakiness’ in 99; lifeopportunities and 250; location of chronicillness in 179–80; long-term conditions and172–3; materialism of 114; Meekosha’sperspective on 237; next steps for criticalrealism in 201–2; people with learningdifficulties and 159, 167–8; postconventionalanalytic about 32–3; postmodernity and 33;progressive transformations of meaning in 40;psycho-emotional disablism 102–3;‘psycho-emotional disablism’ in 90–91;psychology in 362; reflexiveness in 453;researchable issues 134; Scandinavianperspective 119; social model of disability and377; theory and research 362; valuation of livesin 117; vision impairment and 219, 221–2, 231

Disability Studies (Goodley, D.) 34Disability Studies Quarterly 20Disability Studies Reader (Davis, L.J.) 338, 339, 340disability terminology 42–3n1disability theory, philosophical ontology and

349–52disabled bodies, negative emotions and 90disabled families, kinship and resilience 12,

479–87; ASD (autism spectrum disorder) 482,483; Bedroom Tax 481; care and inter-dependency 484–6; Care Quality Commission486; Contact a Family 480; cure or therapy,search for 482–4; cystic fibrosis 483–4;difficulties for disabled families 479–80;disability, family and 479; disability as burden,resilient families and 480–82; ‘disabled families’479; Duchene muscular dystrophy 483–4;families, images of 479; family life in contextof disability 479; Health and Safety Executive486; ILF (Independent Living Fund) 481;interdependency 484–6; Resiliency Model ofFamily Stress, Adjustment and Adaptation 480;Social Metrics Commission 481; SouthernHealth NHS Foundation Trust 486; weblinks491

disabled identity, importance of 426–7disabled migrants: recognition of rights of

316–17; ‘rich and diverse’ lives of 316disabled newborns 356–7disabled parenting 471disabled people: as agents in their own lives 388;

disabling attitudinal environments,consequences of 440–41; in employment

Index

516

250–51; everyday embodied experience 206;in labour market 251–5; movement for,‘communication disablement’ and 217;movement for, ideals and demands of 132–3

Disabled People Against the Cuts 244Disabled People in Britain and Discrimination: A Case

for Anti-Discrimination Legislation (Barnes, C.) 21disabled subject, (re)production of 110–11Disabled We Stand (Sutherland, A.) 19‘The Disabling Society’ (OU study programme)

19disablism 7, 26, 93, 112–13, 138, 206, 374,

469–71; aetiology of 265; chronic illness and427; culture of disablism 371; emotionaldisablism 102, 103; institutional disablism 25,216; psycho-emotional disablism 102, 108–9,110, 113, 115, 133–4, 160, 168;psycho-emotional disablism, impairmenteffects 425–6; racism and, impact of 316; socialoppression of 103; socio-emotional disablism245; structural disablism 90, 113

Discipline and Punish (Foucault, M.) 47, 48disgust 96–8, 99; derivation of 97Dissonant Disabilities (Driedger, D. and Owen, M.

K.) 427DLA (Disability Living Allowance): exclusion and

266, 481; independent living and 284–5, 286,290

Docherty, A., Harkness, E., Eardley, M.,Townson, L. and Chapman, R. 162

Docherty, D., Hughes, R., Phillips, P., Corbett,D., Regan, B. et al. 158, 160, 161

Doe, L. 150Dolmage, J. 309, 310Donnelly, J. 73Dorling, D. 190Dorwick, P.W. and Keys, C.B. 371Dossa, P. 309, 313, 315, 455, 458, 459–60,

461–2, 463–4Douglas, Mary 98Douzinas, C. 73Dovgan, K.N. and Mazurek, M.O. 480Dowling, S. 308Down’s syndrome 493–4Dowrick, C. 191Dowse, L. 158, 159, 164Doyle, B. 23DPI (Disabled Peoples’ International) 16, 18–19,

75, 76, 225, 283, 321, 328DPM (Disabled People’s Movement) 95DPOs (disabled people’s organizations) 82, 313,

316–17, 328–9, 393Drake, R. 283DRC (Disability Rights Commission, UK) 22,

160Driedger, D. and Gray, S. 422Driedger, D. and Owen, M.K. 427

Driedger, Diane 18, 328, 421, 430Drouard, A. 468Drummond, J.D. and Brotman, S. 441DSAs (Disabled Supporters Associations) 392Dubois, J.L. and Trani, J.F. 195Duchene muscular dystrophy 483–4Duncan Smith, I. 257Dune, T.M. 440Dunkin, M. 272Dunlop, D.D., Song, J., Manheim, L.M.,

Daviglus, M.L. and Chang, R.W. 456, 457Dunst, C. 373Dura-Vila, G. and Hodes, M. 456Dworkin, Ronald 358Dwyer, P. and Wright, S. 286‘dys-appearing’ body: embodied disablism and/or

sociology of impairment? 107–8;psycho-emotional disablism and 106–7

Dyson, S.M., Atkin, K., Culley, L.A. and Dyson,S. 179

Eastgate, G., Scheermeyer, E., van Driel, M.L.and Lennox, N, 439, 440, 441, 444, 445, 447

Easton, David 268ECHR (European Commission of Human

Rights) 75, 78, 79, 83ECJ (European Court of Justice) 81–2Economic and Social Inclusion, Centre for 256ECtHR (European Court of Human Rights) 75Edgar, B. and Muirhead, I. 160Education and Employment Committee (UK)

257education barriers to participation 326Education of Handicapped Children Act (US,

1975) 298education reform and disability studies in

education 270–74Edwards, C. and Imrie, R. 206, 214, 215Edwards, J., Franklin, S., Hirsch, E., Price, F. and

Strathern, M. 479Edwards, J., Palmer, G. and Scambler, S. 178Edwards, S. 370egalitarianism 358Eggen, O., Nganwa, A.B. and Suka, A.D. 330Eide, A.H. and Loeb, M.E. 325, 326, 327Eide, A.H., Nhiwathiwa, S., Muderedzi, J. and

Loeb, M.E. 325, 326, 327Eide, A.H., van Rooy, G. and Loeb, M.E. 326,

327El-Lahib, Y. 310, 311El-Lahib, Y. and Wehbi, S. 310, 311Elias, N. 91, 96, 97–8, 176Ellis Island 310emancipatory research: core principles 130;

learning disabilities, theorisation in disabilitystudies 161–2; research on disablement andimpairment 129–31

Index

517

embodiment: body, biomedical power andembodied knowledge 428–9; distinctionbetween forms of 37; embodied selfhood 39;embodied subjectivity 40–41; embodiedtechnologies or technologised bodies? 409–10;ideas of 49; normative forms of, alignmentwith 38

Emerson, E. and Roulstone, A. 114Emerson, E., Malam, S., Davies, I. and Spencer,

K. 160Emery, S.D., Middleton, A. and Turner, G.H.

152Emotion Pictures Disability Film Festival 51emotions, psycho-emotional disablism and 7,

89–99; ‘affective turn’ 90; Anatomy of Disgust(Miller, W.) 99; anxiety, age of 93; Being andNothingness (Sartre, J.-P.) 96; compassion andpity, objects of 94; Concept of Dread(Kierkegaard, S.) 91; disability, threat of 92;disability studies, ‘leakiness’ in 99; disabilitystudies,‘psycho-emotional disablism’ in 90–91;disabled bodies, negative emotions and 90;disgust 96–8, 99; disgust, derivation of 97;DPM (Disabled People’s Movement) 95;emotions, embodied experience of 89, 90;emotions, interpretation of 89; expectoration,hygiene wars against 97; fear 91–3, 99; ‘flightor fight’ 93; ‘flow,’ central metaphor of 98–9;hate 99; interpretation of emotions 89;modernity, critiques of 91–2; objectivity,blight of 92; ‘personal tragedy theory’ 94–5;pity 89, 93–6, 99; pity, hierarchising emotionof 94; pity, recurrent experiences of 94;ptyalism 98–9; ‘reclassification’ 92; saliva,problematic nature of 97–8; scapegoating 92;slime, disgust and 96–7; social inequality89–90; social nature of emotion 90; sociology,turn to emotion in 90; sympathy, compassionand pity 93–4

employment, disabled people and 9, 250–60;Access to Work (UK) 257, 259; British SignLanguage 257; disability, “reclassification” of251; disability studies, life opportunities and250; disabled people in employment 250–51;disabled people in labour market 251–5;Economic and Social Inclusion, Centre for256; Education and Employment Committee(UK) 257; employment exclusion 256–7;Employment Support Allowance (UK) 257;Employment Tribunals (UK) 254, 257;exclusion from labour market 250; ‘flexible’labour market, impact of 252–3; future ofwork 258–60; health, work and 255; Healthand Work Programme (UK) 258; HealthDepartment (UK) 255, 258, 259; ‘hiddenunemployment’ or ‘hidden sickness’? 252;House of Commons Work and Pensions

Committee 252, 256; Job Seekers’ Allowance(UK) 257; Labour Force Survey (UK) 253,255; Labour Party (UK) White Paper (1998)256; National Union of British Sign LanguageInterpreters 257; New Deal for DisabledPeople in UK 256; occupational structure,changes in 253–4; Pathways to Work in UK256; ‘personalised conditionality’ 257; presentsituation, where are we now? 257–8; reservearmy of labour, problem of use of 251; ScopeLondon 253, 254, 255, 266; social modelapproach 250; Social Security Department(UK) 256; tackling employment exclusion256–7; TUC (Trade Union Congress, UK)251, 255; We Are Spartacus (Centre forWelfare Reform, UK) 251; WelfareConditionality Project, UK 257; Work andPensions Department (UK) 250, 255, 257,258, 259; work is good for your health 255;Work Programme (UK), Work Choice and256; Work-Related Activity Group (UK) 257;working conditions, changes in 254–5

employment barriers to participation 326–7Employment Support Allowance (UK):

employment, disabled people and 257;psycho-emotional disablism 111

Employment Tribunals (UK) 254, 257empowerment: ideas of 135; long-term disabling

conditions and 180–82enabling environments: attention to 448;

sexuality and disability 445Enforcing Normalcy: Disability, Deafness, and the

Body (Davis, L.J.) 337–8English Bill of Rights (1689) 72English Federation of Disability Sport 392Enhance UK 446Enhanced Disability Premium 286Epstein, R.A. 68Epstein, S. 407equality: formal structures of 37; human rights,

disability and 73–4Equality Act (UK, 2010): migration and

disability, boundary maintenance and 313;research on disablement and impairment 133

Equality and Human Rights Commission, UK285, 290

Erasmus 97Erevelles, N. 432, 440Erevelles, N. and Minear, A. 308, 309, 432Erikson, E. 494–5ESA (Employment and Support Allowance) 285,

286Esmail, S. 441Esmail, S., Esmail, Y. and Munro, B. 441–2Esquire 414essentialism, valuation hierarchies and 123–5Estroff, S. 192

Index

518

ethics: philosophical ethics and moral significanceof 352–7; self-definition, ethical importance of153–4; Singer’s assumption on 119

EU (European Union) 3, 22, 291; Agency forFundamental Rights 307–8; Agency forSpecial Needs and Inclusive Education 225

eugenics: eugenics-driven formula of disability45–6; newgenics, unerlying issue of 468–9;philosophy and disability 357; unerlying issueof 468

European Convention on Human Rights 74European Disability Forum 80European Social Fund 291European Year of People with Disabilities (2003)

18everyday reality, perception of 206Exceptionality 273exclusion, inclusive education and disability

studies 9, 265–77; American EducationResearch Association Special Interest Group(SIG) in Disability Studies in Education 271;American Psychiatric Association 269; AustraliaCollins Report, Victoria (1984) 277n1;Australia NAPLAN (National AssessmentProgramme - Literacy and Numeracy) 277n2;authenticity, establishment of 274–5, 277;bestowed understandings 267–9; Birth of theClinic (Foucault, M.) 269; CHADD (Childrenand Adults with AttentionDeficit/Hyperactivity Disorder) 269; collectiveindifference 267; community building 276–7;The Culture of New Capitalism (Sennett, R.)267; disability discourses 268; Disability Rightsand Wrongs (Shakespeare, T.) 273; disabilitystudies in education, inclusive educationalepistemologies and 271–4; disability studies ineducation, lessons for inclusive education 274;DLA (Disability Living Allowance) 266, 481;education reform and disability studies ineducation 270–74; Exceptionality 273; exclu-sion, encroachment of 265–6; The Illusion ofFull Inclusion (Kauffman, J.M. and Hallahan, D.P.) 272; institutional causes of exclusion,failure to address 271; irreconcilableepistemologies 271; New Zealand InclusiveEducation Alliance 276; OECD (Organisationfor Economic Co-operation andDevelopment) Programme for InternationalStudent Assessment 276; professionalknowledge and interest 269–70; reductivereflex 271; Reflections on Exile and other Literaryand Cultural Essays (Said, E.) 274; Review ofEducational Research 272; special education,collective indifference and 266–7; SpecialEducational Needs: A New Look (Warnock, M.)265–6; A Tale of Two Cities (Dickens, C.) 265;teacher education 275–6; Understanding

Disability (Oliver, M.) 273; UNESCO (UnitedNations Educational, Scientific and CulturalOrganization) 275; UNICEF 275; WarnockReport on Special Educational Needs in UK(1978) 265–6; Wasted Lives (Bauman, Z.) 267;worst of times 265

expectoration, hygiene wars against 97Expert Patient Programme 135Extraordinary Bodies (Garland-Thomson, R.):

feminism and disability 430, 431; metanarrativeof disability 340

families: family life in context of disability 479;images of: disabled families, kinship andresilience 479; see also disabled families, kinshipand resilience

Family Rights Group 471Farrell, M. 266Farrugia, D. 483Faulkner, William 341fear 91–3, 99Featherstone, K., Atkinson, P., Bharadwaj, A. and

Clarke, A. 482Featherstone, M. 215Feldman, D. 73Female Forms (Thomas, C.) 103feminism and disability 11, 421–33; body,

biomedical power and embodied knowledge428–9; cultural disability studies, feminism and430–32; DaDaFest 425; Disability, Gender andViolence over the Life Course (Shah, S. andBradbury-Jones, C.) 430; Disability andColonialism (Soldatic, K. and Grech, S.) 430;Disability and Rurality (Soldatic, K. andJohnsdon, K.) 430; Disability in the Global South(Grech, S. and Soldatic, K.) 430; disabledidentity, importance of 426–7; DissonantDisabilities (Driedger, D. and Owen, M.K.)427; early contributions and debates 421–2;Extraordinary Bodies (Garland-Thomson, R.)430, 431; feminist disability studies 422–9,433; Gender and Disability Research in the NordicCountries (Kristiansen, K. and Traustadóttir,R.) 430; Generation of Animals (Aristotle) 431;health, chronic illness and cure 427–8;intersectional perspectives 432; knowledge,diverse bodies of 429–32; Living the Edges(Driedger, D.) 430; possibilities and challenges432; prejudice, care and interdependence422–4; Pride against Prejudice (Morris, J.) 422;psycho-emotional disablism, impairmenteffects and 425–6; rethinking impairment424–5; world-wide contributions 429–30

Ferguson, I. 290Fernandes, J.K. and Myers, S.S. 154Fernando, S. and Rinaldi, J. 310, 312Ferri, B.A. and Connor, D.J. 270

Index

519

Ferris, J. 339Fiedler, L. 92Field, M.J. and Jette, A.M. 58Filmer, Deon 326Finch, J. 479Finch, J. and Groves, D. 484Finch, J. and Mason, J. 484–5Fine, M. and Asch, A. 421Fine, M. and Glendinning, C. 485Fineman, M.A. and Grear, A. 82Finkelstein, V. 4, 15, 19, 21, 24, 133, 146–7,

208, 250, 273, 363, 366, 371, 373, 374Finkelstein, V. and French, S. 363Finkelstein, V. and Stuart, O. 373Finkler, K. 483Finnish Abilis Foundation 329Fitts, M. and Soldatic, K. 243Fitzgerald, R. 482Fitzpatrick, R. 179Fitzpatrick, T. 483‘flight or fight’ 93Flinkenflügel, H., Wolffers, I. and Huijsman, R.

330‘flow,’ central metaphor of 98–9Flynn, M. 131Flynn, S. 481Foley, K.E., Zhou, Y., Groskopf, C. and Zhou,

Y. 447forced migration 307Foster, D. and Wass, V. 254Foster, S. and Kinuthia, W. 148Foucault, Michel 19, 39, 40, 41, 45, 47, 48, 49,

53, 176, 190–91, 194, 269, 271, 272, 339,365, 388, 405, 412, 438, 469

Fougeyrollas, P. 58Foundation for People with Learning Disabilities

495Fox, D. and Prilleltensky, I. 367Francis, A. 483Frank, A.W. 483Frank, P. 446Frankfurt School 372Fraser, N. 4–5, 242, 245Frawley, P. and Bigby, C. 493Freakery: Cultural Spectacles of the Extraordinary

Body (Garland-Thomson, R.) 338Fredman, S. 79Freeman, M.C. et al. 82French, C. 226, 227French, S. 22, 24, 135, 207, 209, 212, 424French, S. and Swain, J. 246French Declaration of the Rights of Man and the

Citizen (1789) 72Freud, Sigmund (and Freudianism) 40, 98, 372;

Oedipus complex 222–3Freund, P. 207Friedson, E. 174

Fritz, H.A., Dillaway, H. and Lysack, C.L. 441Fromm, Erich 372Frostig, Marianne 298Fulda, K.G., Lykens, K., Bae, S. and Singh, K.

456Fuller-Thomson, E., Nuru-Jeter, A., Minkler, M.

and Guralnik, J.M. 456functionalist psychology of disability 363–7, 374future directions: employment, disabled people

and 258–60; learning disabilities, theorisationin disability studies 168; mothering anddisability 475–6; potential collaborations and184; sexuality and disability 445–8; sport,physical activity and disability 400–401

Fyffe, C., Bigby, C. and McCubbery, J. 500, 501Fyffe, C., Pierce, G., Ilsley, B. and Paul, P. 494

Gabel, S.L. 273Galer, D. 379Galis, V. xiii, 11, 404–16Galis, V. and Hansson, A. 406Galis, V. and Lee, F. 413Gallagher, D. 273Gallagher, D.J. and Skidmore, D. 5Gallagher, H. 15Gandy, K., King, K., Streeter Hurle, P., Bustin,

C. and Glazebrook, K. 257Garbutt, R. 131García, B., Welford, J., de-Wolff, M. and Smith,

B. 392Garland, R.R.J. 15, 93Garland-Thomson, Rosemarie 91, 105, 118–19,

227, 338, 340, 342, 343, 373, 421, 430–32,445, 446

Garth, B. and Aroni, R. 482Gates, Henry Louis 338Geiger, B.B. 285gender, unerlying issue of 469–71Gender and Disability Research in the Nordic

Countries (Kristiansen, K. and Traustadóttir,R.) 430

gender specificity 467Generation of Animals (Aristotle) 431genetic hearing impairment 153Geneva Refugee Convention (1951) 309Gentleman, A. 313Georgakopoulos, Theodore 414Gerber, D.A. 379Gergen, K. 401Gerodetti, N. 469Getman, Gerald N. 298Ghai, A. 430Giallo, R. and Gavidia-Payne, S. 481Gibson, B.E. 41Gibson, D. and Grew, R. 498Gill, C.J., Kirschner, K.L. and Reis, J.P. 474Gill, M. and Schulund-Vials, C.J. 221

Index

520

Gillborn, D. 270, 272Gillborn, D. and Youdell, D. 267, 269, 276Gillespie-Sells, K. and Campbell, J. 21Gillies, V. 480Gillman, M., Heyman, B. and Swain, J. 482Gilman, Sander 339Gilroy, Paul 51–2, 275Giroux, H. 239, 372Glaser, B.G. and Strauss, A.L. 175Glasgow Commonwealth Games.(2014) 392, 393Glassner, B. 108Gleeson, B.J. 15, 23, 207, 208, 250Glendinning, C. 283Global Burden of Disease study (2004) 322Global Partnership on Disability and

Development 322, 329Global Report on Inequality (2018) 239Glor v. Switzerland (ECtHR, 2009) 75Goffman, Erving 19, 47, 174, 191, 194–5, 339,

340Goggin, G. and Newell, C. 150Goldman, Lucien 274–5Goldstein, Kurt 297Gomez, M.T. 440, 442, 445Goodley, D. xiii, 5, 10–11, 24, 25, 34, 40, 103,

107, 114, 133, 159, 161, 162–3, 164–5, 168,221, 222, 227, 338, 362–74

Goodley, D. and Lawthom, R. 362Goodley, D. and Rapley, M. 164, 165, 166Goodley, D. and Runswick-Cole, K. 228, 230Goodley, D. and Tregaskis, C. 483Goodley, D. and van Hove, G. 159, 164Goodley, D., Hughes, B. and Davis, L. 221Goodley, D., Lawthom, R. and Runswick-Cole,

K. 370Goodley, D., Lawthom, R., Liddaird, K. and

Runswick-Cole, K. 370Goos, M. and Manning, A. 253–4Gordon, C. 174Graham, L.J. 269–70Graham, L.J. and Sweller, N. 267Gramsci, Antonio 388Grandin, Temple 125n1–2Grant, G., Ramcharan, P., Flynn, M. and

Richardson, M. 493Grech, S. 221, 237, 309, 321, 324, 327, 377, 387Grech, S. and Soldatic, K. 237, 430Greek ‘culture of light’ 222–3Green, G. and Platt, S. 178Griffin, J. 355Grimes, P.A. 326Groce, N.E. and Zola, I. 314Grosjean, F. 151Grosz, E. 41group homes, ageing place in 500–502Grover, C. 239, 244Grover, C. and Piggott, L. 242, 246, 251, 259–60

Grover, C. and Soldatic, K. 251, 256Grue, J. xiii, 5, 7, 117–25, 392, 446Grue, L. and Laerum, K.T. 470Guldin, A. 441, 442Gupta, Sanjay 51Gurung, P. 245Guse, T. and Harvey, C. 482Gustavsson, A. 25

Habermas, Jürgen 215, 372Hadith 386–7Hadley, B.J. and McDonald, D. 4Hahn, H. 23, 24, 46, 49, 52–3Haiti, disability and earthquake-decimation in 51Hale, C. 251, 257Hall, E. 439, 496Hamilton, C. 468Hammarberg, Thomas 76–7Hampton, J. 379Hancock, P. and Tyler, M. 213Handicap International 307The Handicapped Person: A New Perspective for Social

Workers (Campling, J.) 20‘The Handicapped Person in the Community’

(OU study course, 1975) 19Handicapping America (Bowe, F.) 19Hanks, J. and Hanks, L. 14Hansen, D.L. and Holme Hansen, E. 482Hansen, S., Wilton, R.D. and Newbold, K,B.

308, 312, 315, 316happiness 355Haraway, Donna 35–6, 120, 125n1Harding, J. and Modell, M. 179Hardt, M. and Negri, A. 50Hareven, T. 493Harpur, P. 281Harris, A., Cox, E. and Smith, C. 16Harris, John 148, 308, 313, 355–6Harris, M. 176Harry, B. and Klingner, J. 456Harvey, D. 24, 25, 267Hasler, F. 3, 21Hasnain, R. and Balcazar, F. 456hate 99Haveman, M. 492Hawkes, Richard 266Hayashi, M., Arakida, M. and Ohashi, K. 441Haydon, M. 369Hays, S. 470HCIL (Hampshire Centre for Independent

Living) 17, 21health: barriers to participation 324–5; care,

improvements in 492; chronic illness and cure427–8; migration process and impact on 316;work and 255; work is good for your health255

Health and Safety Executive 486

Index

521

Health and Social Security Department (UK)286–7

Health and Work Programme (UK) 258Health Department (UK): employment, disabled

people and 255, 258, 259; long-term disablingconditions, disability theory and 172; NHSImprovement Plan 180–81

Healy, E., McGuire, B.E., Evans, D.S. andCarley, S.N. 440, 441, 442, 445

Heaton, J., Noyes, J. and Sloper, P. 481, 484Hebdige, Dick 338Hedgecoe, A.M. 482Hegge, Thorleif G. 297Heller, T., Miller, A., Hsieh, K. and Sterns, H.

494HelpAge International 307Hemsley, B., Sigafoos, J., Balandin, S., Forbes,

R., Taylor, C. et al. 209Hessler, John 302Hevey, D. 22, 95, 339Hien, E. and Deputte, B.L. 364–5, 366, 369Higginbotham, J. and Wilkins, D. 209Higgins, D. 441, 445Higgins, L. and Mansell, J. 502Hines, M. 15Hintermair, M. 151Hirji-Khalfan, R. 459History of Disability (Stiker, H.-J.) 6, 45The History of Sexuality (Foucault, M.) 53Hitler, Adolf 340HIV/AIDS: developing countries, disability in

324, 325; long-term disabling conditions,disability theory and 174, 176, 177, 178;sexuality and disability 445

HK Danmark v. Dansk almennyttigt Boligselskab(ECJ, 2013) 82

HM Government (UK) 285Hobbs, N. and Perrin, J.M. 177Hochschild, A.R. 371Hodapp, R.M., Glidden, L. and Kaiser, A.P. 481Hodge, N. 131Hodge, S. 212Hodges, C.E.M., Jackson, D., Scullion, R.,

Thompson, S. and Molesworth, M. 393Hodkinson, A. 344Hoffmann, R. and Flamich, M. 337Höjer, S. 15Holbrook, J. and Allan, J. 73Holland, A. 498Hollomotz, A. 468Holocomb, T.K. 151home care services 474Home Office (UK) immigration policy changes

(from 2010) 312–13‘homonationalism’ 45homonormativity 50Honneth, A. 153

Hopper, K. 195Horkheimer, Max 372House of Commons Library 285House of Commons Work and Pensions

Committee 252, 256Howe, A. 500Howe, D. 391Howe, D. and Silva, C.F. 394Hsy, J. 303Hubbard, R. 344Huffington Post 446Hughes, B. xiii, 7, 25, 89–99, 103, 104, 108, 183,

241, 242, 308, 309, 311, 315, 369, 425, 481,484

Hughes, B. and Paterson, K. 102, 107, 108, 113,114, 137, 369

Hughes, B., McKie, L., Hopkins, D. and Watson,N. 99

Hughes, Everett 118human/animal binary, breaking down of 120–21Human Fertilization and Embryology Act (UK,

2008) 152human morphology, multiple subdivisions of 36human rights, disability and 7, 72–84; Americans

with Disabilities Act (1990) 75, 133, 377;Bioethics, Council of Europe Committee on80; Council of Europe 83, 84n1; Council ofEurope Committee on Bioethics 80; Councilof Europe High Commissioner for HumanRights 76–7; dignity 73–4; disability humanrights settlement, seeds of 74; ECHR(European Commission of Human Rights) 75,78, 79, 83; ECJ (European Court of Justice)81–2; ECtHR (European Court of HumanRights) 75; equality 73–4; EuropeanConvention on Human Rights (ECHR) 74;European Disability Forum 80; Glor v.Switzerland (ECtHR, 2009) 75; HK Danmarkv. Dansk almennyttigt Boligselskab (ECJ, 2013)82; human rights, post-war settlement 73;Human Rights Act (UK, 1998) 79; humanrights prior to disability Convention 72–6;ICCPR (International Covenant on Civil andPolitical Rights,1966) 74–5, 78; ICESCR(International Covenant on Economic, Socialand Cultural Rights,1966) 74–5, 78;Inter-American Convention on theElimination of All Forms of Discriminationagainst Persons with Disabilities 75;international concern, human rights as 73;International Disability Caucus (IDC) 80; JointCommittee on Human Rights 79; KarstenKaltoft v. the Municipality of Billund (ECJ, 2014)82; Landmine Survivors Network 80;Organization of American States 75;paradoxies of rights 83–4; rights, revolutionand Enlightenment 72–3; The Structure of

Index

522

Scientific Revolutions (Kuhn, T.) 76; towardsbinding Convention on Rights of Personswith Disabilities 74–6; UN Convention on theRights of Persons with Disabilities 76–80,81–2; UN (United Nations) Convention onthe Rights of People with Disabilities (CRPD)72, 73, 76–7, 78–9, 84, 281, 290, 291; UN(United Nations) Convention on the Rights ofPeople with Disabilities (CRPD), comments,statements and guidelines 87–8; UN (UnitedNations) Convention on the Rights of Peoplewith Disabilities (CRPD), CPRD Committee79, 80, 82; UN (United Nations) Conventionon the Rights of People with Disabilities(CRPD), key themes from 80–83; UN(United Nations) conventions, list of 87; UN(United Nations) M! Principles (1991) 75, 77,80; UN (United Nations) Office of the HighCommissioner for Human Rights and theInter-Parliamentary Union 77–8; UN (UnitedNations) Universal Declaration of HumanRights (UDHR) 73–4, 74–5, 78; universalismand human rights 73–4

human thought, boundaries of 348An Essay on Human Understanding (Locke, J.)

220humanity: call for acceptance of 118; loss of 121Hunt, P. 15, 16, 102, 128, 130, 136–7Hunt, X. xiv, 11–12, 436–48Hunt, X., Carew, M.T., Braathen, S.H., Swartz,

L., Chiwaula, M. and Rohleder, P. 439, 445Hunt, X., Swartz, L., Braathen, S.H., Carew, M.,

Chiwaula, M. and Rohleder, P. 438Hunt, X., Swartz, L., Carew, M.T., Braathen, S.

H., Chiwaula, M, and Rohleder, P. 439Hurst, R. and Albert, B. 23Hurstfelt, J., Meager, N., Aston, J., Mann, K.,

Mitchell, H., O’Regan, S. and Sinclair, A. 133Husson, T.-A. 382, 388

ICCPR (International Covenant on Civil andPolitical Rights,1966) 74–5, 78

ICESCR (International Covenant on Economic,Social and Cultural Rights,1966) 74–5, 78

IDC (International Disability Caucus) 80identity formation, American disability studies

emphasisa on 118–19identity politics: animality and disability,

relationship between 119–20; deaf identities indisability studies 146; seductive lure of 36

ZŽižek, Slavoj 272Iemmi, V., Gibson, L., Blanchet, K., Suresh

Kumar, K., Rath, S. et al. 330Ignagni, E., Fudge Schormans, A., Liddiard, K.

and Runswick-Cole, K. 440IKA (Social Insurance Organisation in Greece)

406

ILF (Independent Living Fund): disabled families,kinship and resilience 481; independent living283–4, 290

Illinois Test of Psycholinguistic Abilities 298The Illusion of Full Inclusion (Kauffman, J.M. and

Hallahan, D.P.) 272ILM (Independent Living Movement): research

on disablement and impairment 132, 136;social model of disability 16–17, 281, 423

ILO (International Labour Organization) 306,329

Images of Ourselves: Women with Disabilities Talking(Campling, J.) 20

immigration see migration and disability,boundary maintenance and

impairment: construction of phenomena of350–51; contested issue of 163–7; disabilityand social model 377; dynamic interactionbetween social structures and processes andnature of 493; harmful to well-being 356;impact in developing countries of 322–3;impairment communities 122–3; impairment/disability divide, challenges of challenging383–7; impairment/disability divide, movingbeyond 378; incorporation into revised socialmodel 387–8; lived experience of 127;Merleau-Ponty and sociology of 206; inpeople’s lives, role of 354; psychologicalimpact of living with 362; rethinkingimpairment 424–5; sensory impairment 443–4;social creation of 379–82

Improving the Life Chances of Disabled People(PMSU 2005) 22, 288

Imrie, R. 206Imrie, R. and Edwards, C. 207inaccessible buildings, experience of 108incapacity, new social standard 48–9Incapacity Benefit, independent living and 285Inclusion Europe 23, 25Inclusion London 284independent living 9, 281–91; activism and

independent living 282–3; ADASS(Association of Directors of Adult SocialServices) 289; agenda for change, emergenceof 282–3; anti-social benefits 284–5; AuditScotland 289; Australia National DisabilityInsurance Scheme 288; BCODP (BritishCouncil of Organisations of Disabled People)283, 288; Brexit and 291; Cabinet Office, UK288; Care Act (UK, 2014.) 289; care markets,carving out routes to independence and286–7; cash for care 287–9; CILs (Centres forIndependent Living) 282, 283, 288;Community Care (Direct Payments) Act (UK,1996.) 288; Community Care (DisabledPersons) Act, UK (1996) 288; direct payments,independent living in era of 287–9; Disability

Index

523

Living Allowance (DLA), shift to PersonalIndependence Payment (PIP) 284–5, 290;disability policy divergence, areas of 290; DLA(Disability Living Allowance) 284–5, 286, 290;Enhanced Disability Premium 286; Equalityand Human Rights Commission, UK 285,290; ESA (Employment and SupportAllowance) 285, 286; European Social Fund291; Health and Social Security Department(UK) 286–7; HM Government (UK) 285;House of Commons Library 285; ILF(Independent Living Fund) 283–4, 290;Incapacity Benefit 285; Inclusion London 284;independence and autonomy, socio-economicrequirements for 281–2; Independent LivingFund (ILF), rise and fall of 283–4; IndependentLiving Movement 281; isolation, independentliving and 289–90; Mind 286; National AuditOffice (UK) 286; NHS and Community CareAct (UK, 1990) 287; personalisation of socialcare 287–9; PHBs (Personal Health Budgets)289; philosophy of independent living,development of 281–2, 282–3, 290; ScottishGovernment 289; Severe Disability Premium286; SILF (Scottish Independent Living Fund)284; social care, taking social out of 289–90;Social Care (Self-directed Support Act) (SDS)(Scotland) Act (2013) 289; social security,facilitation of support through 283–4; SocialSecurity Agency in Scotland 290; socialsecurity system (UK), independent living and282; Transforming Your Care programme(Health and Social Care Board, NorthernIreland) 289; Uloba in Norway 289; UN(United Nations) Committee on the Rights ofDisabled Persons 285, 481; Universal Credit286; WCA (Work Capability Assessment) 285;Welfare Reform Act (UK, 2012) 285; Workand Pensions Department (UK) 285, 286, 290

indirect psycho-emotional disablism 105–6industrialisation 208–9; industrialised societies, life

in 404Ingstad, B. 14Ingstad, B. and Whyte, S.R. 14, 323Institute of Education Sciences in US 46Institute of Medicine 57–8, 69n4institutionalisation, problem of 502–3‘Integrating Disability, Transforming Disease

History: Tuberculosis and its Past’ (Linker, B.and Abel, E.K.) 382

intellectual disability: chronological demarcationof old age for people with 498–9; lifeexperiences of people with 499; philosophyand disability 353, 354; proportion in ageingpopulation with 503; rights and consent444–5; sexuality and disability 442–3

intensive mothering, ideology of 470

Inter-American Convention on the Eliminationof All Forms of Discrimination against Personswith Disabilities 75

interactional models of disability 174–6, 351interdependence: critical disability studies,

postmodernity and 41; disabled families,kinship and resilience 484–6

interdisciplinarity: critical disability studies,postmodernity and 34; metanarrative ofdisability 345

Intergroup Contact Theory 134internalised oppression: problem of 105;

unpacking of 108–10International Centre for Evidence in Disability

330International Classification of Diseases, Injuries,

and Causes of Death 59International Classification of Functioning,

Disability and Health (ICF) 7, 55–69;Americans with Disabilities Amendment Act(2008) 56, 68; Bill of Rights in United StatesConstitution (1791) 72; Death, US Committeeon Joint Causes of (1945) 59; disabilitydefinitions, models and classifications 55–9;disability studies, ICF and 67–8; English Bill ofRights (1689) 72; French Declaration of theRights of Man and the Citizen (1789) 72; ICFActivities and Participation classification 63;ICF and CRPD 65–7; ICF classifications60–61; ICF conceptualisation 61–5; ICFmodel 61; Institute of Medicine 57–8, 69n4;International Classification of Diseases, Injuries,and Causes of Death 59; ‘International List ofCauses of Death’ (International StatisticalInstitute, 1891) 59; International StatisticalClassification of Diseases and Related HealthProblems (ICD) 59; International StatisticalInstitute 59; Irish National Disability Survey69n6; migration and disability, boundarymaintenance and 308; models, componentsand conceptual meanings of ‘disability’ 58–9;Nagi model of disability 57–8, 63, 69n4;NOD (National Organization of Disability)68; PALS (Canadian Participation and ActivityLimitation Survey) 69n6; Québec model ofdisability 58, 69n4; UN (United Nations)Convention on the Rights of Persons withDisabilities (CRPD), Article 33-NationalImplementation and Monitoring 68; UN(United Nations) Convention on the Rights ofPersons with Disabilities (CRPD), Article31-Statistics andf Data Collection 68; UN(United Nations) Convention on the Rights ofPersons with Disabilities (CRPD), ICF and65–7; Verbrugge and Jette model of disability57–8, 69n4; Washington Group 69n6, 328;WHO, health professionals and the ICF

Index

524

59–60; WHO (World Health Organization)Constitution of (1948) 59; WHO (WorldHealth Organization) health professionals, ICFand 59–60; WHO (World HealthOrganization) ICDH-2 58, 59; WHO (WorldHealth Organization) ICF, disability studiesand 67–8; WHO (World Health Organization)ICF, UNCRPD and 65–7, 67–8; WHO(World Health Organization) ICF Activitiesand Participation classification 63–4; WHO(World Health Organization) ICFclassifications 60–61; WHO (World HealthOrganization) ICF conceptualisation 61–5;WHO (World Health Organization)ICF-Disability, phenomenon of 61, 62, 65, 66,68–9n2; WHO (World Health Organization)ICIDH 58, 59, 61, 63–4; WHO (WorldHealth Organization) ICIDH-Disability 63;WHO (World Health Organization)ICIDH-Handicap 63

International Development Department (UK)329

International Society for Crippled Children 18International Year of Disabled People (1981) 221interpretative approach 175–6; interpretivist

conceptualisations 165interrupting diagnosis 302–3intersectionality: intersectional perspectives 432;

intersectionality theory 316; problem of 124;race/ethnicity, disability studies and 458–9

Introna, A. 344invisibility 459–61IOC (International Paralympic Committee) 392,

394–5IOM (International Organization for Migration)

306, 307Ipsos MORI 285Irish National Disability Survey 69n6isolation, independent living and 289–90IVF services 152–3, 356–7

Jaarsma, E. and Smith, B. 399Jaarsma, E., Haslett, D. and Smith, B. 398Jackson, M. 98Jacobs, Kenneth 303Jacquet, J. 175Jay, M. 219Jenks, C. 219, 229Jenks, E.B. 483Jennings, A. 379Jessop, B. 267Job Seekers’ Allowance (UK) 257Jobling, R. 176, 179Johnson, D.D. and Johnson, B. 276Johnson, Harriet McBryde 117, 118, 119–25Johnson, H.M. 468Johnson, K. and Walmsley, J. 133

Johnson, M. and McRuer, R. 429Joint Committee on Human Rights 79Jolly, D., Priestley, M. and Matthews, B. 160Jones, H. and Reed, R. 324Jones, N. and Kelly, T. 202Jones, N. and Shattell 2014, M. 82Jongbloed, L. 475Jordan, L. and Bryan, K. 212Jordan, L. and Goodey, C. 276Jordan, L. and Kaiser, W. 206, 212, 214, 216,

217Journal of Disability and the Global South 321Journal of Literary & Cultural Disability Studies

(JLCDS) 339, 344Journal of Medical Ethics 448Just Health Care (Daniels, N.) 357–8Just Health (Daniels, N.) 357–8A Theory of Justice (Rawls, J.) 357, 359Jutel, Annemarie 119

Kafer, A. 388, 425, 428, 429, 432Kagan, C. 373Kagan, C. and Burton, M. 373Kahonde, C.K., McKenzie, J. and Wilson, N.J.

439, 447Kant, Immanuel 72Kanter, A. 74, 75, 76, 80, 83, 281, 291Karsten Kaltoft v. the Municipality of Billund (ECJ,

2014) 82Kassebaum, G. and Bauman, B. 174Katbamna, S., Ahmad, W., Bhakta, P., Baker, R.

and Parker, G. 481Kauffman, J. and Sasso, G. 273Kauffman, J.M. and Hallahan, D.P. 272Kayess, R. and French, P. 67, 74, 76, 78, 81Kazou, K. 65–6Keith, L. 105Kelly, M. 132–4, 136, 178Kelly, M. and Glover, I. 135Kelly, S.M., Wild, T.A., Ryan, C.L. and

Blackburn, M.V. 443Kemp, B. and Mosqueda, L. 493Kemp, P.A. and Davidson, J. 252Kendall, E. and Rogers, A. 179Kenny, M. 146Kephard, Newell C. 298Kerbage, H. and Richa, S. 440Kesey, Ken 341Kestenbaum, A. 284, 288Kevles, D.J. 468Keyzer, P., Carney, T. and Tait, D. 492Kierkegaard, Søren 91, 96Kim, E. 439Kim, K.M. 315Kinder, J.M. 379Kirk, Samuel A. 297, 298Kitchin, R. 106, 133, 207

Index

525

Kittay, E.F. and Carlson, L. 73Kittay, Eva 353, 357, 423, 484Kitzinger, C. 366Kleege, G. 220–21, 223, 226, 227, 228, 338, 339Kleinman, A., V. Das, and M. Lock 237–8Klotz, J. 167Klug, F. 72, 73, 74, 80Knight, G., Salis, S., Francavilla, F., Radu, D.,

Hevenstone, D. et al. 256Knight, T. 270knowledge: biomedical power and embodied

knowledge 428–9; blindness, foundations ofknowledge about 221; di-visions in 220–21;diverse bodies of 429–32; experientialknowledge, agency and 341; professionalknowledge and interest 269–70

Knowles, C. 470Knox, M. and Bigby, C. 494, 495Koku, E. 174Kolnai, Aurel 89, 96, 97Koro-Ljungberg, M., MacLure. and Ulmer, J.

400Koshy, S. 51Kozol, Jonathan 267, 276Krause, J.S., Saunders, L. and Staten, D. 456, 457Kreigel, L. 94Krieger, L.H. 68Kristeva, Julia 96, 97Kristiansen, K. and Traustadóttir, R. 25, 430Kristiansen, K., Vehmas, S. and Shakespeare, T.

221, 222, 223, 224, 227Kristiansen, K., Velmas, S. and Shakespeare, T.

24Kudlick, C. 382, 383Kuhn, T.S. 76, 221Kuipers, P., Wirz, S. and Hartley, S. 330Kulick, D. and Rydström, J. 447, 448Kuppers, P. and Overboe, J. 339Kuppers, Petra 338Kutchins, H. and Kirk, S.A. 269Kuusisto, S. and Kuppers, P. 342

Labour Force Survey (UK) 253, 255labour migration 307Labour Party (UK) White Paper (1998) 256Lacan, Jacques 34, 40Ladd, P. 150Ladd, P. and John, M. 145, 148Lanci, M. 470, 474Land, H. 484Landmine Survivors Network 80Landsman, G. 483Lane, H. 148, 149Lane, H. and Bahan, B. 150Lang, Raymond 328language: language blindness 229–30; sexuality

and 438

Lappeteläinen, A., Sevón, E. and Vehkakoski, T.441

Larson, E. 483, 484Lasonen, J., Kemppainen, R. and Raheem, K.

326Lather, E. 130Latimer, J. 482Latour, Bruno 90, 404, 409Law, J. 408Lawrie, P.R.D. 379Lawson, A. 76Lawson, A. and Sayce, L. 291Lawson, A. and Waddington, L. 79, 81Leach Scully, J. xiv, 8, 102, 107, 145–55Leadbeater, C. 288learning disabilities, theorisation in disability

studies 8, 158–69; Another Disability StudiesReader? Including People with Learning Difficulties(Goodley, D. and van Hove, G.) 159, 164;attitudinal barriers 160; British Journal ofLearning Disabilities 159; ‘disability pride,’concept of 160–61; disability studies, peoplewith learning difficulties and 159, 167–8;discourse analysis 165; ‘doing the social model’162–3; emancipatory research 161–2;experiences people with learning difficultiesshare with other disabled people 159–60;experiences which may be distinctive topeople with learning difficulties 160–61; futuredirections 168; impairment, contested issue of163–7; interpretivist conceptualisations 165;learning difficulties, construction of 164, 166;learning difficulties, theory and study of 158,167; National Institute of Adult ContinuingEducation 160; neuropsychological condition,learning disability as 296–9; People Firstmovement 161; personal experience,importance of 161; postmodernist analysis164–5; prejudice, discrimination and 161;psycho-emotional disablism, cumulativeimpact of 160; reality, impairment as 165–7;self-advocacy 162–3, 167; social construction,impairment as 163–5; social model,experiences of people with learning difficultiesand 159–61, 162–3, 167; theorisation about‘learning disability’ 161–3, 167; UPIAS (Unionof the Physically Impaired Against Segregation)158–9, 163

Leder, D. 106–7, 108, 109, 111, 112, 206Lee, Harper 341LeFrancois, B.A., Menzies, R.J. and Reaume, G.

385legal discourse on disability 155legitimate bodily performances 214–15Lehtinen, Laura 297Leigh, I. 150, 151, 153, 154Lemert, E. 14

Index

526

Lenney, M. and Sercombe, H. 207, 210, 213Leonard Cheshire Disability 326Leonardi, M., Bickenbach, J.E., Üstün, T.B.,

Kostanjsek, N. and Chatterji, S. 59, 66Leth-Sorensen, S. and Rohwer, G. 473Letts, L., Martin Ginis, K.A., Faulkner, G.,

Colquhoun, H., Levac, D. and Gorczynski, P.398

Levin, D.M. 219Levinson, F. and Parritt, S. 362, 368Levy, N. 152Lewin, Ben 446LGBTQIA+ issues 448Liberman, A. 448Liddiard, K. and Slater, J. 439, 442Liddiard, K., Runswick-Cole, K., Goodley, D.,

Whitney, S., Vogelmann, E. and Watts, L. 131A Life Apart: A Pilot Study of Residential Institutions

for the Physically Handicapped and the YoungChronic Sick (Miller, E. and Gwynne, G.) 128

life course stages 494–5life expectancy 492Lightfoot, E. and Williams, O. 457Lindemann, K. 484Lindsay, C., Greve, B., Cabras, I., Ellison, N. and

Kellett, S. 252Lingard, B. 269Lingsom, S. 112Link, B.G. and Phelan, J.C. 175Linker, B. and Abel, E.K. 382Linton, S. 93, 349, 454, 475Lisney, E. 244, 246Lister, R. 308Literary Disability Studies 339literature reviews: race/ethnicity, disability studies

and 454–5; sexuality and disability 438, 441–2Living the Edges (Driedger, D.) 430Llewellyn, A. and Hogan, K. 406Llewellyn, G. 485Llewellyn, G. and McConnell, D. 485Lloyd, L. 485Lloyd, M. 153Lo, L. 459Lock, S., Jordan, L., Bryan, K. and J. Maxim 183Locke, John 72, 220–21, 223, 226–7, 229Locker, D. 179Locock, L., Ziebland, S. and Dumelow, C. 176Loeb, M., Eide, A.H., Jelsma, J., Toni, M.K. and

Maart, S. 327Loeb, M.E. and Eide, A.H. 325, 326, 327Loeser, C., Pini, B. and Crowley, V. 439, 446,

447Lollar, D.J. and Crews, J.E. 322London Paralympics (2012) 393Loneliness and its Opposites (Kulick, D. and

Rydström, J.) 447Long, K. 180

long-term disabling conditions, disability theoryand 8, 172–84; ‘anti-oppression’ measures,medicalisation and state sponsorship of 180–82;arthritis 172; batten disease, primacy ofbiological and 182–4; Batten Disease FamilyAssociation 182; biomedical concerns 178–9;challenging questions 180; chronic illness 172;chronic illness, key themes within sociologicalunderstanding of 176–7; Clinical Psychology,Division of 181, 190; conflict approach 175;DESMOND Collaborative 181; diabetes180–82; disability studies, location of chronicillness in 179–80; disability studies, long-termconditions and 172–3; empowerment 180–82;future directions, potential collaborations and184; Health Department (UK) 172; HealthDepartment (UK) NHS Improvement Plan180–81; HIV/AIDS 174, 176, 177, 178;interactionist approach 174–6; interpretativeapproach 175–6; long-term conditions,definition of 172; self-image and self esteem,assaults on 178–9; social constructionistapproach 176; social relations, impact on177–8; sociology of long-term disablingconditions 173–4; UN (United Nations)Committee on the Rights of Disabled Persons175; uncertain and unpredictable futures 177;Universal Credit (UK) 186, 285

Longmore, Paul K. 94, 96, 378, 387–8Longmore P. and Umansky, L. 378Loopstra, R., Fledderjohaan, J., Reeves, A. and

Stuckler, D. 257Lord, J. 77, 80, 81Lorig, K. 135Löve, L. et al. 79Lovell, B. 480Lukacs, Georg 274Lundblad, M. xiv, 7, 117–25Lunsky, Y., Durbin, A., Brown, H.K., Bansal, S.,

Heifetz, M. and Antoniou, T. 438Lupton, D. 97, 176, 410

Ma, J. and Martin Ginis, K. 399McBryde Johnson, H. 7McCabe, M.P. 441, 442McCarron, M. 501McClimens, A. and Richardson, M. 163McCubbin, H., Thompson, A. and McCubbin,

M. 480MacDonald, Kevin 267Macdonald, L. 176, 179MacDonald, M. and Tyson, P. 497McDonough, P.A. 472McGillivray, D., McPherson, G. and Misener, L.

393McGrath, P. 482Machin, R. 284–5

Index

527

McIntosh, S. 253McKay, D. 76, 80McKeever, P. and Miller, K.-L. 481, 483Mackenzie, C., Rogers, W. and Dodds, S. 82McKinney, E.L. 441, 442McKnight, L. and Whitburn, B. 229–30MacLachlan, M. and Swartz, L. 445McLaughlin, J. xiv, 12, 479–87McLaughlin, J. and Clavering, E.K. 482–3McLaughlin, J. and Goodley, D. 482, 483McMahan, Jeff 353, 356McMahon, M. 470McManus, S., Bebbington, P., Jenkins, R. and

Brugha, T. 189MACOHA (Malawi Council for the

Handicapped) 330McPherson, G., O’Donnell, H., McGillivray, D.

and Misener, L. 392Macpherson, H. 400McRuer, R. 5, 41, 47, 52, 242, 338McRuer, R. and Wilkerson, A. 370McTier, A., Macdougall, L., McGregor, A.,

Hirst, A. and Rinne, S. 4McVilly, K.R. 473McVittie, C., Goodall, K.E. and McKinlay, A.

161Maddison, S. and Martin, G. 239Magadi, M. 480Mairs, N. 475The Making of Blind Men (Scott, R.A.) 19Malacrida, C. xiv, 12, 467–76Malawi Federation of Disability Organisations

330Malhotra, R., Chei, C.-L., Menon, E.B., Chow,

W.-L., Quah, S. et al. 480Mandell, D.S., Wiggins, L.D., Carpenter, L.A.,

Daniels, J., DiGiuseppi, C. et al. 456Mannan, H. and Turnbull, A. 330Manning, E. 98Mapley, H.M. 344Marchant, R. 482Marcuse, Herbert 372Marini, I., Chan, R., Feist, A. and Flores-Torres,

L. 439Marks, D. 39, 105, 128, 166, 168, 211, 367, 368Marmot, M. and Wilkinson, R. 190, 202Marriott, A. and Gooding, K. 327Martin, J. 391Martin Ginis, K.A., Ma, J.K., Latimer-Cheung,

A.E. and Rimmer, J. 397Martin Ginis, K.A., Nigg, C.R. and Smith, A.L.

398Marx, Karl. 74, 251, 372Massumi, B. 53Mathieson, C.M. and Stam, H.J. 176Matsebula, S., Schneider, M. and Watermeyer, B.

328

Mauldin, L. 406Mayou, R. 177Mays, V.M., Gallardo, M., Shorter-Gooden, K.,

Robinson-Zanartu, C. et al. 456, 457Mbembe, A. 52MDGs (Millennium Development Goals) 329Meadows, P. 253The Meaning of Disability (Blaxter, M.) 19Means, R., Richards, S. and Smith, R. 287medical sociology: medical/individual explanation

for blindness 223–4; research on disablementand impairment 127, 138

Meekosha, H. and Shuttleworth, R. 43n3, 221,222, 227

Meekosha, Helen 221, 237–8, 308, 309, 310, 424Mehrotra, N. 237Meissner, F. and Vertovec, S. 306Mellor, P. and Shilling, C. 97Mental Deficiency Act (UK, 1913) 468mental distress, social perspectives on 8, 189–202;

Bradley Report (2009) 190; CapabilitiesApproach 195–6, 196–7, 197–9, 199–201,202; capabilities approach, constraints within199–201; capabilities approach, studydescription and findings 197–9; critical realism,broad concepts 193; critical realism,comparison of capabilities approach with199–201; critical realism, disability studies and194; critical realism, empirical example of usein primary research on mental distress195–201; critical realism, mental distress and194–5; critical realism, next steps for 201–2;critical realism, sensibility towards, engagementwith 201–2; disability studies, next steps forcritical realism in 201–2; ingredients for athriving life that a person values and wouldchoose 198; mental distress, next steps forcritical realism in 201–2; Mental Health (Careand Treatment) (Scotland) Act (2003) 197;Office of the Deputy Prime Minister 190;ongoing disadvantages experienced by peoplewith mental distress 189–90; Rethink PolicyStatement (2003) 190; Scottish Index ofMultiple Deprivation 190; social researchabout mental distress, first three ‘waves’ of190–91; social research and mental distress189–91; social understandings of mentaldistress 189; survivor-led research,development and impact of 191–2

Menzies, R., Le Francois, B. and Reaume, G.191

‘mere difference’ view 351–2Merleau-Ponty, Maurice 39–40, 106, 206, 215,

369metanarrative of disability 10, 337–45; Aesthetic

Nervousness (Quayson, A.) 340–41; The Bodyand Physical Differences: Discourses of Disability

Index

528

(Mitchell, D.T. and Snyder, S.L.) 338;Corporealities: Discourses of Disability (Mitchell,D.T. and Snyder, S.L.) 338; critical avoidance337; cultural disability studies 337, 338, 339,344, 345; cultural disability studies, emergenceof 337–9; Cultural Disability Studies ResearchNetwork 339; cultural representations 337;culture, study of disability and understandingof 344–5; disability, study of culture andunderstanding of 339–44; Disability & Society339; Disability Studies Reader (Davis, L.J.) 338,339, 340; Enforcing Normalcy: Disability,Deafness, and the Body (Davis, L.J.) 337–8;Extraordinary Bodies (Garland-Thomson, R.)340; Freakery: Cultural Spectacles of theExtraordinary Body (Garland-Thomson, R.)338; interdisciplinarity 345; Journal of Literary &Cultural Disability Studies (JLCDS) 339, 344;Literary Disability Studies 339; NortonAnthology of Theory and Criticism 338; TheNature of Prejudice (Alport, G.W.) 339–40;Project MUSE 339; social encounters,avoidance of 337; Stigma: Notes on theManagement of Spoiled Identity (Goffman, E.)339, 340; Treasure Island (Stevenson, R.L.) 342;The Well of the Saints (Synge, J.M.) 342

Michalko, R. xiv–xv, 8–9, 219–31, 366–7,368–9, 369–71, 373

Michalko, R. and Titchkosky, T. 230–31migration and disability, boundary maintenance

and 10, 305–17; Aliens Act (UK, 1905) 310;asylum seekers 307; Australia ImmigrationRestriction Act (1901) 310; AustraliaMigration Act (1958) 310; CanadaImmigration Act (1976) 310; CanadaImmigration Act amendment (1902) 310;Canada Immigration and Refugee ProtectionAct (2001) 312; disability, administrationsystems and discourses of ‘burden’ on 315–16;disability, race and migration, intersections of308–9; disabled migrants, recognition of rightsof 316–17; disabled migrants, ‘rich and diverse’lives of 316; Ellis Island 310; Equality Act(UK, 2010) 313; EU (European Union)Agency for Fundamental Rights 307–8; forcedmigration 307; Geneva Refugee Convention(1951) 309; Handicap International 307;health, migration process and impact on 316;HelpAge International 307; Home Office(UK) immigration policy changes (from 2010)312–13; ICF (International Classification ofFunctioning, Disability and Health) 308; ILO(International Labour Organization) 306, 329;immigration histories 309–10; immigrationpolicies 305–6; immigration policies,contemporary policies 310–13; immigrationpolicies, disability and 309–13; intersectionality

theory 316; IOM (International Organizationfor Migration) 306, 307; irregular immigration307; labour migration 307; migrants 307;migration, defining issue of 305; MigrationData Portal 306; migration studies 305;migration terms 307; mobile world, migrationin twenty-first century 306–8; National AuditOffice (UK) 313; refugees 307; rights,realisation and practice of 313–15; services,access to and navigation of 313–15; UN(United Nations) Committee on Rights ofPersons with Disabilities 307, 311; UN(United Nations) Committee on theProtections of the Rights of All MigrantWorkers and Members of Their Families 307;UN (United Nations) Convention on theRights of Persons with Disabilities (CRPD)306, 307, 309, 311; UN (United Nations)Refugee Convention (1951) 307; UNHCR306, 308; UNHCR Executive CommitteeConclusion on Refugees with Disabilities andOther Persons with Disabilities 307; Windrushscandal (UK) 312; Women’s RefugeeCommission 308, 316; World Report onDisability (WHO and World Bank, 2011) 306,321

Miles, M. 14, 323Mill, John Stuart 72Millard, A.D. and McCartney, G. 190Miller, A. 110Miller, E. and Gwynne, G. 128–9Miller, E., Chen, R., Glover-Graf, N.M. and

Kranz, P. 439Miller, W.I. 94, 96, 98, 99Mills, C. 481Mind 286Minkowitz, Tina 80, 82Minskoff, E.H. 297Minton, J.W., Pickett, K.E. and Dorling, D. 252Mintz, S.B. 367Mirza, M. 309, 313, 314, 316Mirza, M. and Heinemann, A.W. 313, 314Mitchell, D.T. xv, 6, 8, 45–53, 338Mitchell, D.T. and Snyder, S.L. 24, 49, 50, 52,

92, 271, 309, 310, 338, 341, 378Mitra, S. 195Mitra, S. and Sambamoorthi, U. 326–7Mladenov, T. 83–4, 242Mladenov, T., Owens, J. and Cribb, A. 290Modern Project 408–9modernity, critiques of 91–2Moeckli, D., Shah, S. and Sivahumaran, S. 73, 74Mojtahedi, M. and Hisayo Katsui, H. 401Mol, A. 409Mol, A. and Law, J. 409Molyneux problem 220Mona, L.R. 468

Index

529

Monbeck, M.E. 342, 343Money, J. 437Monforte, J., Pérez-Samaniego, V. and

Devís-Devís, J. 399Monforte, J., Perez-Samaniego, V. and Smith, B.

399Moore, K., McDonald, P. and Bartlett, J. 259Moore, M. xv, 9, 265–77Mordaunt, Penny 329Morgan, D. 479Morgan, H. 241–2Morgan, R. 475Morita, K. 468morphological difference, engagement with 42Morris, Alf 17Morris, J. 5, 15, 21, 22, 24, 132, 135, 161, 165,

179, 227, 287, 308, 421, 422–3, 424Morris, R. xv, 9, 250–60Morrison, J., Basnet, M., Budhathoki, B.,

Adhikari, D., Tumbahangphe, K. et al. 445Morrison, S. 446Moser, I. 406, 407–8, 409Mosoff, J. 470, 474Moss, B., Parr, S., Byng, S. and Petheram, B. 179Moss, S. 499Moss, S., Hogg, J. and Horne, M. 497Most, T., Wiesel, A. and Blitzer, T. 151Mostafa, A. 307mother-blame, vulnerability to 470mothering and disability 12, 467–76; deficit

model of disability 469–70; Disability,Pregnancy & Parenthood 469; disability,unerlying issue of 467–9; disability servicedelivery, over- and under-service in 473–4;disability-specific research, disabled mothers in467; disabled parenting 471; economic, socialand environmental barriers 470–71;employment, disabled mothers and 472–3;eugenics, unerlying issue of 468; Family RightsGroup 471; financial compensation fordisabled mothers 473; future considerations475–6; gender, unerlying issue of 469–71;gender specificity 467; home care services 474;intensive mothering, ideology of 470; MentalDeficiency Act (UK, 1913) 468;mother-blame, vulnerability to 470;motherhood in disability research, erasure of472–5; mothering, unerlying issue of 467–8;newgenics, unerlying issue of 468–9; part-timework 473; policies and programming fordisabled mothers 471; programmes andbenefits for disabled people, inadequacy of473–4, 474–5; Roeher Institute 474; StatisticsCanada 471

Mpofu, E. and Harley, D.A. 457MS (multiple sclerosis) 104–5, 106Mullins, Amy 51

Murphy, E. 314, 315Murray, S. 338Murray, S. and McRuer, R. 339Mussami, B. 98

Naffine, N. 72Nagel, T. 348Nagi, S.Z. 57–8Nagi model of disability 57–8, 63, 69n4Nance, W.E. 148narrative, remaking centre through 463–4Nash, K. 308, 311, 314National Assistance Act, UK (1948) 22National Audit Office (UK): independent living

286; migration and disability, boundarymaintenance and 313

National Institute of Adult Continuing Education160

National Longitudinal Transition Study (US Deptof Education) 46

National Union of British Sign LanguageInterpreters 257

‘natural Man’ 45Nay, R. and Garratt, S. 498Nazroo, J.Y. 314Neal, M. 73Needham, C. and Dickinson, H. 288negative attitudes, ubiquity of 321Nellums, L., Rustage, K., Hargreaves, S.,

Friedland, J., Hiam, L. and Le Deaut, D. 313,314–315

Nellums, L., Rustage, K., Hargreaves, S.,Friedland, J., Millar, A. and Hiam, L. 213,314–15

neoliberalism: labour productivity and 49;neoliberal classificatory assessment regimes242–4; as regime of governance for disabledpeople 238; reimagining of disability and238–40

Nettleton, S. 176Neugarten, B. 495New, C. 138New Deal for Disabled People in UK 256New Zealand Inclusive Education Alliance

276Newbould, J., Taylor, D. and Bury, M. 181newgenics, unerlying issue of 468–9Newman, S., Steed, L., Mulligan, K. 181NGOs (non-governmental organisations):

animality and disability, relationship between119, 122; developing countries, disability in328–9, 330

Nguyen, X.T. 221NHS and Community Care Act (UK, 1990) 287Nickel, J. 72Nicki, A. 470Nietzsche, Friedrich 91–2, 95

Index

530

Nixon, S.A., Cameron, C., Hanass-Hancock, J.,Simwaba, P. et al. 445

NOD (National Organization of Disability) 68NORAD (Norwegian Agency for Development

Cooperation) 329Nordqvist, I. 15‘normal’ subject, (re)production of 111–12normalisation, micro-technologies of 46–8Norton Anthology of Theory and Criticism 338Norwegian Association of the Disabled 330Norwegian Council on Disability 329Nosek, M.A., Howland, C., Rintala, D.H.,

Young, M.E. and Chanpong, G.F. 441Nunes, R. 150Nussbaum, Felicity 338Nussbaum, Martha 10, 73, 81, 125n1, 194, 274,

358–9

‘objective’ and ‘subjective, distinction betweensenses of 349–50

objectivity, blight of 92O’Brien, J. and Lyle O’Brien, C. 496O’Brien, Mark 446The Observer 215occupational structures, changes in 253–4O’Dea, S., Shuttleworth, R.P. and Wedgwood,

N. 440OECD (Organisation for Economic

Co-operation and Development) 9, 239, 254,259, 275, 285, 327; Programme forInternational Student Assessment 276

Oedipus, paradox of 223Oesterreich, H.A. and Knight, M.G. 456Office of the Deputy Prime Minister (UK) 190Ogot, O., McKenzie, J. and Dube, S. 326old age: double jeopardy of 497–8; reformulation

of 498–9; see also ageing, intellectual disabilityand

Oliver, M. and Barnes, C. 16, 22, 84Oliver, M. and Zarb, G. 22Oliver, Michael 4, 14, 15, 18, 20, 21, 24, 58, 60,

91, 94, 146, 179, 250, 282, 310, 314, 323,349, 350, 406, 424; agency, structure andemancipatory research 127, 129–30, 131, 132,138n1; blindness/sightedness 221, 223, 224,225; disability studies, inclusive education andexclusion 267, 268, 271, 273, 274; learningdifficulties, people with 158, 159, 166;psychology of disability 367, 371, 373; speechimpairment, people with 208, 212, 217

Olkin, R. 362, 368, 470Olkin, R. and Pledger, C. 368Olusanya, B.O. and Newton, V.E. 325Omar, G.G., Lau, A.S., Yeh, M., McCabe, K.M.

and Hough, R.L. 456Ong, A. 238–9opportunity, value of 355–6

oppression: ‘anti-oppression’ measures,medicalisation and state sponsorship of 180–82;defining nature of 48; internalised oppression,problem of 105; internalised oppression,unpacking of 108–10; multiple, intersectingoppressions, responses to 462–4; multiple andintersecting identities, multiple oppressions and458–62; social oppression of disablism 103

Organization of American States 75Oriang project in western Kenya 326OSA (obstructive sleep apnoea) 411Ostrander, R.N. 441‘otherness,’ recognition of 36O’Toole, C.J. 469Ott, K. 297Ottoman Arab world 386–7OU (Open University) 19Ouellette, A. 482, 483Overboe, J. 42–3n1, 369Oxfam 239

Padden, C. and Humphries, T. 147, 148, 149,154

Paine, Thomas 72Palmer, D. 442Palmer, G. 253PALS (Canadian Participation and Activity

Limitation Survey) 69n6Papathomas, A., Williams, T.L. and Smith, B.

399Paradis, K., Misener, L., McPherson, G.,

McGillivray, D. and Legg, D. 393Paralympic Games in London (2012) 47Parekh, P.N. 237‘parent care years’ 495–6Parfit, D. 355Parker, I. 368, 372Parr, H. 192Parr, S., Duchan, J. and Pound, C. 212, 216, 217Parr, S., Paterson, K. and Pound, C. 206, 207,

208, 209–10Parrish, T. 270Parsons, Talcott 19, 173part-time work 473partiality: disposability of disabled people,

campaigning against 244–6; neoliberalclassificatory assessment regimes 242–4

participation, barriers to 323–8participatory research 131–2; process of 131Partington, K. 480partnership initiatives 499–500Parton, C., Ussher, J.M., Natoli, S. and Perz, J.

485Paterson, K. xv, 8, 206–17Paterson, K. and Hughes, B. 106, 108–9, 114,

206, 207, 349Pathways to Work in UK 256

Index

531

Patja, K., Iivanainen, M., Vesala, H., Oksanen,H. and Ruoppila, I. 492

Patrick, D., Scrivens, E. and Charlton, J. 179Patrick, D.L., Topolski, T.D., Edwards, T.C.,

Aspinall, C.L. et al. 178Pavli, A. 412–13Paylor, I. 399Pearce, E. 307, 308, 316Pearl, A. and Knight, T. 277Pearson, C. xv, 9, 281–91Pearson, C. and Ridley, J. 288, 289, 481Pearson, C., Watson, N. and Manji, K. 289Peck, J. 240Peck, J. and Theodore, N. 239, 240Peck, S. 266Peersm D. 394Penketh, C. and Waite, L. 345People First movement 161performativity: of embodied selfhood 34; theory

of 39–40Perrier, M.-J., Smith, B. and Latimer-Cheung, A.

E. 399person-centred planning 496person-environment interaction 437‘personal tragedy theory’ 94–5personalisation of social care 287–9‘personalised conditionality’ 257personhood, attributes of 34Peta, C. 439, 440Peta, C., McKenzie, J., Kathard, H. and Africa,

A. 439, 441Peters, S. 21, 146Petersen, A. 459Pettigrew, T.F. and Tropp, L.R. 134Pfeiffer, D. 67Pfeiffer, D. and Yoshida, K. 20PGD (preimplantation genetic diagnosis) 152–3,

356–7PHBs (Personal Health Budgets) 289phenomenological perspective on speech

impairment 209–10phenomenological psychology of disability

367–73, 374phenomenology and ‘dys-appearing’ body 106–7Philo, G., Briant, E. and Donald, P. 306, 311philosophy and disability 10, 348–59; capabilities

approach 358–9; contractarianism357–8; disability, natural and social factors in351; disability, normative concept of 352–3;disability, normative examination of 355;disability, philosophical ethics and moralsignificance of 352–7; disability, philosophyand understanding of 348–9; disability theory,philosophical ontology and 349–52; disablednewborns 356–7; egalitarianism 358; eugenics357; existence, modes of 350; happiness 355;human thought, boundaries of 348;

impairment, construction of phenomena of350–51; impairment in people’s lives, role of354; impairments, harmful to well-being of356; intellectual disability 353, 354;interactional models of disability 351; JustHealth Care (Daniels, N.) 357–8; Just Health(Daniels, N.) 357–8; A Theory of Justice (Rawls,J.) 357, 359; ‘mere difference’ view 351–2;‘objective’ and ‘subjective, distinction betweensenses of 349–50; opportunity, value of 355–6;people’s experiences, judgements regardingquality of 353–4; philosophical ethics, moralsignificance of disability and 352–7; politicalphilosophy and disability policy 357–9; socialconstructionism 349; social model of disability350; true or false statements 350; value ofphilosophy for disability 359

Philosophy and the Mirror of Nature (Rorty, R.) 229philosophy of independent living, development

of 281–2, 282–3, 290physical activity, disability and 396–400Physical Activity Guidelines Advisory Committee

396Physical Activity Guidelines for Americans 396physical disability, sexuality and 441–2Pick, Anat 125n1Pilgrim, D. 137, 190, 191, 195, 201, 202Pilgrim, D. and Bentall, R. 194Pilgrim, D. and Rogers, A. 134Pinch, T.J. and Bijker, W.E. 406Pinder, R. 176, 177, 178Pinquart, M. and Pfeiffer, J.P. 443PIP (Personal Independence Payment) 110, 285,

286, 290, 481Pisani, M. and Grech, S. 309pity: compassion and pity, objects of 94;

emotions, psycho-emotional disablism and 89,93–6, 99; hierarchising emotion of 94;recurrent experiences of 94

Place, B. 484Plumb, A. 189, 191, 202Plunkett, J. and Pessoa, J.P. 254PMSU (Prime Minister’s Strategy Unit, UK) 22Pogge, Thomas 359policy: initiatives, marginal effects of 26; practice

research and 493; programming for disabledmothers and 471

politics: affective politics of neoliberal invalidation240–42; biopolitics, new era of 46; partialityand affective politics of neoliberal invalidation240–42; political philosophy and disabilitypolicy 357–9; political product of diagnosis295, 300–302; politicisation of deaf people147; of space, development of 208

The Politics of Disablement (Oliver, M.) 21, 159The Politics of Mental Handicap (Ryan, J. and

Thomas, F.) 19

Index

532

Pope, A.M. and Tarlov, A.R. 58population norms, reduction of gap between

lifespan and 492Porpora, D.V. 193Porter, A. 110Porter, T. and Shakespeare, T. 284positives and negatives, importance of 121–2postconventional approaches 32–3, 34–5, 36What Is Posthumanism? (Grandin, T.) 125n1postmodernism: disturbance and 40; post-

modernist analysis in learning disabilities 164–5Potts, M. and Fido, R. 271poverty barriers to participation 327–8Poverty in the United Kingdom (Townsend, P.) 19Powell, A. 251, 480Powell, J.J.W. 456Power, A. and Bartlett, R. 481Power, A. and Hall, E. 290, 481Practical Ethics (Singer, P.) 119prejudice: care and interdependence 422–4;

discrimination and 161The Nature of Prejudice (Alport, G.W.) 339–40Preston, P. 148Price, J. and Shildrick, M. 111Price, M. 423, 425, 428–9Pride against Prejudice (Morris, J.) 422Prideaux, S., Roulstone, A., Harris, J. and Barnes,

C. 283Priestley, M. 15, 20, 25, 283, 287, 288Priestley, M. and Rabiee, P. 498Priestley, M., Riddell, S., Jolly, D., Pearson, C.

and Williams, V. 288Prilleltensky, I. 365, 371–2Princeton University, Johnson and Singer at 117professionals, alliances of 373Project MUSE 339prosthetic enhancement 51psycho-emotional disablism 7, 102–15; The

Absent Body (Leder, D.) 106; AIDS 104, 176,177, 407; British Social Attitudes Survey(2009) 114; Cartesian mind/body divide 106;consciousness, ‘false’ and ‘double’ 109;cumulative impact of 160; direct psycho-emotional disablism 103–5; disability,‘disavowal’ of 103–4; disability, individualmodel of 102; disability studies 102–3;disability studies, materialism of 114; disabledsubject, (re)production of 110–11;‘dys-appearing’ body 106–7; ‘dys-appearing’body, embodied disablism and/or sociology ofimpairment? 107–8; Employment SupportAllowance (UK) 111; Female Forms (Thomas,C.) 103; impairment effects and 425–6;inaccessible buildings, experience of 108;indirect psycho-emotional disablism 105–6;internalised oppression, problem of 105;internalised oppression, unpacking of 108–10;

MS (multiple sclerosis) 104–5, 106; ‘normal’subject, (re)production of 111–12;phenomenology and ‘dys-appearing’ body106–7; psycho-emotional disablism 102–3,114, 115; psycho-emotional disablism, role ofimpairment in experiences of 112–14;psycho-emotional well-being, undermining of104; role of impairment in experiences of112–14; RSD (reflex sympathetic dystrophy)104; social interactions, ‘rules of engagement’for 105; spatial barriers 106; stigma, impact of102; structural disablism, removal of sources of114–15; UPIAS (Union of the PhysicallyImpaired Against Segregation) 103, 112; WorkCapability Assessment (UK) 111, 244, 251

psycho-emotional well-being, undermining of104

psychology of disability 10–11, 362–74;communities, professionals allied to 373;critical psychological disability studies 367–73;critical psychology of disability, contribution ofphenomenology to 368–73; disability studies,psychology in 362; disability studies, theoryand research 362; Frankfurt School 372;functionalist psychology of disability 363–7,374; idea of development of, questionsconcerning 362; impairment, psychologicalimpact of living with 362; individualisticunderstandings of psychological and socialphenomena 364–7; phenomenologicalpsychology of disability 367–73, 374;professionals, alliances of 373; professionals,professionals allied to 373; psychologicaldisability studies 363–7; psychology as a criticof society 372–3; psychology as discipline ofand for communities 370–71; psychology asdiscipline of the individual 365; psychology asfunctionalist science 364–5; psychology ashandmaiden of society 366–7; psychology asphenomenological inquiry 369–70;psychology’s treatment of community 371–2;psychology’s treatment of the individual 365–6

Psychology of Sport and Exercise 399ptyalism 98–9Puar, J. 45, 49, 50, 52, 53Public Health England 396, 397Pygmalion (Shaw, G.B.) 214

Qiu, Z.Y. 325QuadPara Association of South Africa 323Quarmby, K. 92Quartz 447Quayson, Ato 338, 340–41, 344Québec model of disability 58, 69n4Quinn, G. and Arstein-Kerslake, A. 77Quinn, G. and Degener, T. 75Quinn, Gerard 74, 80

Index

533

Quinn, Neil 309, 314, 316Qu’ran 386–7

Rabeharisoa, V. and Callon, M. 406–7Race, D., Boxall, K. and Carson, I. 158, 166race/ethnicity, disability studies and 12, 453–64;

Canada Disability Studies Association in 453;Canada ERDCO (Ethno Racial People withDisabilities Coalition of Ontario) 463; CanadaNational Action Plan on Disability 463; CCD(Council of Canadians with Disabilities) 463;citizenship rights 462–3; competent sensitiveprovision 457–8; constraint, restraint and461–2; containment 461–2; culturally sensitiveprovision 457–8; culture, disability and serviceprovision 455–8; disability studies, reflexivenessin 453; intersectionality 458–9; invisibility459–61; literature review 454–5; multiple,intersecting oppressions, responses to 462–4;multiple and intersecting identities, multipleoppressions and 458–62; narrative, remakingcentre through 463–4; outsider and invisible459–61; race/ethnicity and disability, wherehave we been on? 453–5; service provision,emergence of theme of culture and disabilityin context of 455–7; storytelling, remakingcentre through 463–4

Radford, J.P. 468Radley, A. 174, 175Rae, A. 206, 217Rafter, N. 467Raghavan, R. 457–8Ralph, S., Capewell, C. and Bonnett, E. 93Ramsay, S. 468Rao, S. 163–4Rapley, M. 368Rapp, R., Heath, D. and Taussig, K.-S. 482Raspberry, K. and Skinner, D. 483Ravneberg, B. 406, 411Rawls, John 355, 357–8, 359Reagan, L. 383–5reality, impairment as 165–7Reason, P. and Heron, J. 131Rechel, B., Mladovsky, P., Ingleby, D.,

Mackenbach, J.P. and McKee, M. 313reductive reflex 271reductive universalisation 35ReelAbilities Film Festival in New York 446Reeve, D. xv, 7, 90, 102–15, 134, 242, 368, 446Reeve, D. and Soldatic, K. 241Reflections on Exile and other Literary and Cultural

Essays (Said, E.) 274refugees 307Rehabilitation Act (US) 17rehabilitation barriers to participation 324–5Reich, Wilhelm 372Reina, M.V. 80

Reinelt, C. and Fried, M. 475Reiter, S., Bryen, D.N. and Shachar, I. 441Rembis, M.A. xv–xvi, 11, 377–89Rembis, M.A., Kudlick, C. and Nielsen, K.E.

378research on disablement and impairment 7,

127–38; agency-structure problem 135–6;change, development and improvement134–5; Chronic Disease Self-ManagementProgramme 135; critical realism, alternativeapproach through 136–8; critical realism, levelsof analysis 137; disability research,condemnation of mainstream of 129–30;disability research, critical realism and 136–8;disability research, problems with 132–4;disability studies, approaches to, relationshipsbetween 127–8; disability studies, foundationsof 127; disability studies, researchable issues134; disabled people’s movement, ideals anddemands of 132–3; emancipatory research129–31; emancipatory research, core principles130; empowerment, ideas of 135; Equality Act(UK, 2010) 133; Expert Patient Programme135; ILM (Independent Living Movement)132, 136; impairment, lived experience of 127;Intergroup Contact Theory 134; A Life Apart:A Pilot Study of Residential Institutions for thePhysically Handicapped and the Young ChronicSick (Miller, E. and Gwynne, G.) 128; medicalsociology 127, 138; participatory research131–2; participatory research, process of 131;researching disability, background to 128–9;social change, self-change and 134–5; SomeProblems with Health Promotion Research (Kelly,M.) 132–4; Stanford Patient EducationResearch Centre 135–6; UPIAS (Union of thePhysically Impaired Against Segregation) 130,136–7

Resiliency Model of Family Stress, Adjustmentand Adaptation 480

Resnik, L. and Allen, S. 456restorative solutions 223–4Rethink Policy Statement (2003) 190Retznik, L., Wienholz, S., Seidel, A.,

Pantenburg, B., Conrad, I. et al. 443Review of Educational Research 272RI (Rehabilitation International) 18Ribbens, J. 130Richardson, E., Smith, B. and Papathomas, A.

397Richardson, G., Kennedy, A., Reeves, D.,

Bower, P., Lee, V. et al. 136Richardson, M. 167Riddell, Roger 329Riddell, S., Baron, S. andWilson, A. 166Riddell, S., Edward, S., Weedon, E. and

Ahlgren, L. 252, 253, 256

Index

534

Riddell, S., Pearson, C., Barnes, C., Jolly, D.,Mercer, G. and Priestley, M. 288

Riddle, C.A. xvi, 10, 195, 348–59Ridge, D., Williams, I., Anderson, J. and Elford,

J. 176Rigazio-DiGilio, S. 483rights: paradoxies of rights 83–4; realisation and

practice of 313–15; revolution andEnlightenment 72–3; see also human rights,disability and

Rioux, M. 373Rioux, M. and Bach, M. 129Rizvi, F. and Lingard, B. 268, 276Robb, C. 257Roberts, D.E. 470Roberts, Ed 302Roberts, K. and Harris, J. 308, 313, 314Robertson, J., Emerson, E., Hatton, C., Elliott,

J., McIntosh, B. et al. 496Robey, K.L., Beckley, L.and Kirschner, M. 439,

446Robeyns, Ingrid 358Robillard, A.B. 207, 209, 210, 212, 213Robinson, I. 175, 177Roeher Institute 474Roets, G. and Goedgeluck, M. 439Roets, G., Reinaart, R., Marie Adams and Geert

Van Hove, G. 165Roets, G., Van de Perre, D., Van Hove, G.,

Schoeters, L. and de Schauwer, E. 158Rogers, A. and Pilgrim, D. 190, 191–2, 193, 194Rogers, C. 40Rohleder, P. 445Rolling Quads at Berkeley 302Romme, M. and Escher, A. 191Rorty, R. 229Rose, N. 49, 82, 84, 190, 191, 196, 269Rose, S.F. 379Rosenberg, G.N. 84Rosenhan, D. 19Roth, J. 175, 176Rothman, S.M. 297Roulstone, A. 22, 212, 285, 408; employment,

disabled people and 250, 251, 259Roulstone, A. and Mason-Bish, H. 93, 99Roulstone, A. and Morgan, H. 241, 242, 245Roulstone, A. and Prideaux, S. 405Rousseau, Jean-Jacques 72, 93–4Rowe, J. and Kahn, R. 498Roy, A. and Sejpal, A. 238Roy, Arundhati 244, 246RSD (reflex sympathetic dystrophy) 104Rubery, J., Grimshaw, D., Keizer, A. and

Johnson, M. 481Ruger, J.P. 359Rule, S., Lorenzo, T. and Wolmarans, M. 330Rurherford, G. 270

Russell, M. 257Russell, M. and Malhotra, R. 250, 254–5, 256Ryan, F. 285Ryan, J. and Thomas, F. 15, 19, 159, 163, 208Ryan, Kerry 384, 385, 388Ryan, Michael and Maureen 384Ryan, S. 4, 486

Sachs, L. 314Sacks, O. 176Said, Edward 274–5Salih, S. and Butler, J. 33Salinger, J.D. 341saliva, problematic nature of 97–8Saltes, N. 310, 312Sandahl, C. and Auslander, P. 338Sandell, R. 446Sandhu, P., Ibrahim, J. and Chinn, D. 313Santos, A.E. and Santos, A.L. 468Sartre, Jean-Paul 89, 96, 99St. Guillaume, L. and Finlay, E. 237St. Guillaume, L. and Thill, C. 237St. Pierre, E.A. 221, 227Savulescu, Julian 356–7Saxton, M. 357Saxton, M., Curry, M.A., Powers, L.E., Maley,

S., Eckels, K. and Gross, J. 470Sayce, L. 257, 260Sayer, A. 137, 197, 200, 201, 241, 245Scalenghe, S. 386–7Scambler, G. 20–21, 191, 194–5Scambler, G. and Hopkins, A. 174, 175Scambler, G. and Scambler, S. 175, 180, 184Scambler, S. xvi, 8, 137, 172–84Scambler, S. and Newton, P. 177, 182–3Scambler, S., Newton, P. and Asiakopoulou, K.

G. 181scapegoating 92Schaafsma, D. 441Scheff, T.J. 19, 191Schillmeier, M. 220–21, 222, 227, 228Schneider, I. and Conrad, P. 175, 179Schoen, J. 468Schram, S., Fording, R. and Soss, J. 246Schulze, M. 81, 82Schwarzenegger, Arnold 47Schweik, S. 90Science, Technology and Human Values 412science and technology studies (STS), disability

and 11, 404–16; ANT (actor-network theory)407–8; apheresis 414–15, 416n2; assistivetechnologies 410–11; biopolitics of disability415; CPAP (continuous positive airwaypressure) devices 411; determinist essentialismthrough social constructivism topost-modernity 405–7; dis/abling borders413–15; disability, biopolitics and state 412–13;

Index

535

embodied technologies or technologisedbodies? 409–10; humans and technology,Upgrade (film) and dynamic between 415; IKA(Social Insurance Organisation in Greece) 406;indivitual to relations 407–9; industrialisedsocieties, life in 404; Modern Project 408–9;OSA (obstructive sleep apnoea) 411; Science,Technology and Human Values 412; SCS (spinalcord stimulation) 409; somatechnics 409, 414,415n1; STEM (experimental artificialintelligence implant) 404; ‘Trying Out theWheelchair’ (Winance, M.) 410; Upgrade(Leigh Whannell film) 404, 415

Scope London 253, 254, 255, 266Scotch, R. 15Scott, P., Richards, E. and Martin, B. 406Scott, R.A. 19, 223, 224, 225Scottish Government 289Scottish Index of Multiple Deprivation 190Scriver, C.R., Beaudet, A.L., Sly, W.S., Childs,

B. and Vogelstein, B. 182SCS (spinal cord stimulation) 409SDGs (Sustainable Development Goals) 329Searle, John 349–50Sebeta Teacher Training Institute in Ethiopia 326Sedentary Behaviour Group (UK) 398self-advocacy 162–3, 167self-becoming 41self-consciousness of deaf people 147self-identity of middle-aged people 496self-image and self esteem, assaults on 178–9Seltzer, M. and Krauss, M. 495Sen, Amartya 8, 10, 195, 196, 199, 201, 328,

358, 359Sennett, Richard 267sensory impairment 443–4Series, L. xvi, 7, 72–84, 281Serlin, D. 338service provision, emergence of theme of culture

and disability in context of 455–7services, access to and navigation of 313–15The Sessions (Ben Lewin film) 446Sevenhuijsen, S. 485Severe Disability Premium 286sexuality 38; disability and 11–12, 40, 436–48;

embodiment and 436; exclusion and 436, 448;Trieschmann’s definition of 437; WHOdefinition of 437–8

sexuality and disability 11–12, 436–48; AmericanAssociation on Intellectual and DevelopmentalDisabilities 444; assisted sex, discourse ofpleasure and 446–7; attitudes as context439–40; background 438; challengingquestions 444–5; disabling attitudinalenvironments, consequences of 440–41;enabling environments 445; enablingenvironments, attention to 448; Enhance UK

446; future directions 445–8; HIV/AIDS 445;human sexual sentiment and behaviour 438;individual experiences 441–4; intellectualdisability 442–3; intellectual disability, rightsand consent 444–5; Journal of Medical Ethics448; language, sexuality and 438; LGBTQIA+issues 448; literature review 438, 441–2;Loneliness and its Opposites (Kulick, D. andRydström, J.) 447; person-environmentinteraction 437; physical disability 441–2;ReelAbilities Film Festival in New York 446;representational work 445–6; research thus far439–44; sensory impairment 443–4; TheSessions (Ben Lewin film) 446; sexual pleasure,discourse of 446–7; sexuality, embodiment and436; sexuality, exclusion and 436, 448;sexuality, Trieschmann’s definition of 437;sexuality, WHO definition of 437–8; SRH(sexual and reproductive health care) services443; structural barriers, attention to 448;structural barriers and enabling environments445; Sundance Film Festival 446; theory, noteon 437–8; trend lag in low- andmiddle-income countries 447–8; UN (UnitedNations) Convention on the Rights ofPersons with Disabilities (CRPD) 444, 445,448; UN (United Nations) General Assembly444

Shackel, D.W. 459Shah, R. 480Shah, S. and Bradbury-Jones, C. 430Shakespeare, T. and Watson, N. 24, 129, 138,

146, 161, 165, 184Shakespeare, T., Gillespie-Sells, K. and Davies,

D. 5, 22, 40Shakespeare, T., Iezzoni, L.I. and Groce, N.E. 4Shakespeare, T., Mugeere, A., Nyariki, E. and

Simbaya, J. 323Shakespeare, Tom xvi, 4, 5, 10, 22, 24, 25, 56,

66, 131, 137, 146, 155, 180, 183–4, 267, 273,321–31, 338, 339, 392, 407, 438, 446, 494;blindness/sightedness 221, 222, 223, 227;learning difficulties, people with 159, 160,166, 168; philosophy and disability 349, 350,351, 354; psycho-emotional disablism 104,112–13; social model of disability,disability history and 377, 385, 388

Shapiro, J. 15Sharma, N. 480Shaw, George Bernard 214Shearer, A. 19Sheets-Johnstone, M. 98Sheldon, A. 23, 26, 258Sherry, M. 41, 183, 184, 369Shield, S.A. 366Shildrick, M. 6, 8, 32–43, 92–3, 97, 99, 110, 222,

227, 229, 404, 409, 428–9, 446

Index

536

Shildrick, M. and Price, J. 104, 429Shilling, C. 213, 214, 215SIA (Spinal Injuries Association) 17Sibley, D. 267Sidgwick, Henry 119Siebers, T. 40, 339, 406Sieglar, M. and Osmond, M. 174sightedness: blindness and 228–9; provisional

sense of 220; see also blindness/sightedness,disability studies and

Sightsavers International 330Sigurjónsdóttir, H.B. and Rice, J.G. 470SILF (Scottish Independent Living Fund) 284Silverman, D. 175Silverman, Kaja 339Silvers, A. 357Simon, W. 437Simpson, M. 160, 163, 167Singer, E. 176Singer, Peter 7, 117, 118, 119, 120–21, 124, 356Singh, I. 482Sins Invalid 425Sissons, P. 253, 254Skeels, Harold 297Skeggs, B. 90, 244, 245Slater, J. 423Slee, R. xvi, 9, 265–77slime, disgust and 96–7Small, Judy 496Smiler, K. and McKee, R.L. 148Smith, A.E., Molton, I.R., McMullen, K. and

Jensen, M.P. 441, 442Smith, B. xvi, 11, 391–401Smith, B. and Sparkes, A.C. 391, 392, 400Smith, B., Bundon, A. and Best, M. 394–5Smith, B., Kirby, N., Skinner, B., Wightman, L.,

Lucas, R. and Foster, C. 396, 397, 398Smith, Dorothy E. 475Smith, F.B. 97Smith, K. 4Smith, R.J.H., Hildebrand, M. and Van Camp,

G. 152Smith, R.T. 177Smith-Khan, L., Crock, M., Saul, B. and

McCallum, R. 308Snyder, S.L. xvi–xvii, 6, 8, 45–53, 338Snyder, S.L. and Mitchell, D.T. 338, 339Snyder, S.L., Brueggemann, B.J. and

Garland-Thomson, R. 338Social Care (Self-directed Support Act) (SDS)

(Scotland) Act (2013) 289social change, self-change and 134–5social coinstructionism: social constructionist

approach to long-term conditions 176social constructionism: impairment as social

construction 163–5; philosophy and disability349

social demands, gap between individual capacitiesand 118

social encounters, avoidance of 337social inequality 89–90social interactions, ‘rules of engagement’ for 105social legitimacy of diagnosis 295Social Metrics Commission 481social model of disability 4–5, 6, 14–26; African

Decade of Persons with Disabilities(2000–2009) 18; American SociologyAssociation 20; Arab Decade of DisabledPersons (2003–2012) 18; arrival of 19; Asianand Pacific Decade of Disabled Persons(2003–2012) 18; Attitudes and Disabled People:(Finkelstein, V.) 19; BCODP (British Councilof Organisations of Disabled People) 16, 21;Better Lives for Disabled Women (Campling, J.)20; blindness/sightedness, disability studies and225–6; British social model, Longmore’scritique of 378; Chronically Sick and DisabledPerson’s Act (UK) 17; CILs (Centres forIndependent Living) 17; Commission of theEuropean Communities Action Plan (2003)22; Community Care (Disabled Persons) Act,UK (1996) 22; DA (Disability Alliance) 15;DCIL (Derbyshire Centre for IntegratedLiving) 17, 21; DHS (Disability, Handicap andSociety) 21, 22; DIAL (Disability Informationand Advice Lines) 21; DIG (Disabled IncomesGroup) 15; Disability: Whose Handicap (Shearer,A.) 19; Disability & Society 21; Disability StudiesQuarterly 20; Disabled We Stand (Sutherland,A.) 19; ‘The Disabling Society’ (OU studyprogramme) 19; discontents with 23–5; ‘doingthe social model,’ learning disabilities and162–3; DPI (Disabled Peoples’ International)16, 18–19, 75, 76, 225, 283, 321, 328;European Year of People with Disabilities(2003) 18; fundamental transformationalthinking about disability in 377; TheHandicapped Person: A New Perspective for SocialWorkers (Campling, J.) 20; ‘The HandicappedPerson in the Community’ (OU study course,1975) 19; Handicapping America (Bowe, F.) 19;HCIL (Hampshire Centre for IndependentLiving) 17, 21; ILM (Independent LivingMovement) 16–17, 281, 423; Images ofOurselves: Women with Disabilities Talking(Campling, J.) 20; impact of 19–23; InclusionEurope 23, 25; International Society forCrippled Children 18; learning difficulties and159–61, 162–3, 167; The Making of Blind Men(Scott, R.A.) 19; The Meaning of Disability(Blaxter, M.) 19; origins of 14–19; OU (OpenUniversity) 19; perception of disability, shift in26; philosophy and disability 350; policyinitiatives, marginal effects of 26; The Politics of

Index

537

Mental Handicap (Ryan, J. and Thomas, F.) 19;Poverty in the United Kingdom (Townsend, P.)19; Rehabilitation Act (US) 17; RI(Rehabilitation International) 18; SIA (SpinalInjuries Association) 17; social model approachto employment 250; social model thinking,fundamental principles of 377–8; Social Workwith Disabled People (Oliver, M.) 14; Society forDisability Studies (US) 20; The Sociology ofPhysical Disability and Rehabilitation (Albrecht,G.L.) 19; UN (United Nations) Declaration onthe Rights of Disabled Persons (1975) 17; UN(United Nations) Declaration on the Rights ofMentally Retarded Persons (1971) 17; UN(United Nations) General Assembly 18, 22, 74;UN (United Nations) International Year ofDisabled People (1981) 17, 18, 75; UN(United Nations) Standard Rules on theEqualization of Opportunity for People withDisabilities (1993) 22; UN (United Nations)UN Enable 22, 76; UN (United Nations)World Programme of Action ConcerningDisabled Persons 18; WHO (World HealthOrganization) Disability and RehabilitationTeam 22; WHO (World Health Organization)International Classification of Disease (1976)17–18; WHO (World Health Organization)International Classification of Functioning andHealth (ICF) 22, 25; WHO (World HealthOrganization) International Classification ofImpairment Disability and Handicap (ICIDH)17–18; WHO (World Health Organization)‘Rethinking Care from Disabled People’sPerspectives’ 22; World Bank Social Analysisand Disability: A Guidance Note (2007) 23

social protection barriers to participation 327–8social relations, impact on long-term conditions

177–8social security, facilitation of support through

283–4Social Security Agency in Scotland 290Social Security Department (UK) 256social security system (UK), independent living

and 282social suffering in neoliberal age 9, 237–47;

affective politics of neoliberal invalidation240–42; Australia National Audit Office 243;Australia Parliamentary Budget Office 239,244; contesting partiality and disposability ofdisabled people 244–6; disabilityrepresentations from global north 237;disability studies, Meekosha’s perspective on237; Disabled People Against the Cuts 244;Global Report on Inequality (2018) 239;neoliberal classificatory assessment regimes242–4; neoliberalism and reimagining ofdisability 238–40; neoliberalism as regime of

governance for disabled people 238;ordinariness in everyday forms of socialsuffering 246; partiality and affective politics ofneoliberal invalidation 240–42; partiality anddisposability of disabled people, campaigningagainst 244–6; partiality and neoliberalclassificatory assessment regimes 242–4; socialsuffering of disabled subjects 237–8; TheSociological Review 239; southern disabledlifeworlds, historicity of 237; structuralpositionality of social suffering 246–7; UN(United Nations) Convention of the Rights ofPersons with Disabilities (2008) 240; UN(United Nations) Economic and Social Affairs,Department of 245; UN (United Nations)Permanent Forum on Indigenous Issues 245;UN (United Nations) Special Rapporteur onthe Rights of Persons with Disability 245; UN(United Nations) Sustainable DevelopmentGoals 245

Social Work with Disabled People (Oliver, M.) 14Society for Disability Studies (US) 20socio-temporal corporeal worth, denial of 210sociocultural-historical model of disability, call for

adoption of 388sociocultural imaginary 38–9The Sociological Review 239sociology: of long-term disabling conditions

173–4; turn to emotion in 90The Sociology of Physical Disability and Rehabilitation

(Albrecht, G.L.) 19Soder, M. 25Soldatic, K. xvii, 9, 237–47, 309, 310, 430Soldatic, K. and Chapman, A. 244Soldatic, K. and Fiske, L. 310, 312, 315, 460Soldatic, K. and Fitts, M. 243Soldatic, K. and Grech, S. 430Soldatic, K. and Johnson, K. 430Soldatic, K. and Meekosha, H. 90, 256Soldatic, K. and Morgan, H. 241, 242Soldatic, K. and Pini, B. 90Soldatic, K. and Sykes, K. 240Soldatic, K., Meekosha, H. and Somers, K. 310,

311–12, 313somatechnics 409, 414, 415n1Some Problems with Health Promotion Research

(Kelly, M.) 132–4Somerville, S. 290Sontag, Susan 178, 339Southern Health NHS Foundation Trust 486Spandler, H., Anderson, J. and Sapey, B. 81, 82,

385Sparkes, A., Brighton, J. and Inckle, K. 395, 396Sparkes, A., Martos Garcia, D., and Maher, A.

398Sparkes, A.C. xvii, 11, 391–401Sparrow, R. 150

Index

538

Sparrowhawk, Connor 4, 486spatial barriers, psycho-emotional disablism and

106special education, collective indifference and

266–7Special Educational Needs: A New Look (Warnock,

M.) 265–6Spedding, F., Harkness, E., Townson, L.,

Docherty, A., McNulty, N. and Chapman, R.162

speech impairment 8, 206–17; aestheticisation ofcontemporary culture 215; alternativecommunication technology, provision of 208;anxiety and fear of 211; ‘choreography,’concept of 207, 212–13; commodified time209; communication, compliance withembodied norms of 216; communication,distortions of 210; communication, embodiednorms of 207–8, 216; communication,opportunities for 206; communication,systematic distortion of 215; ‘communicationdisablement’ 212–13; ‘communicationdisablement,’ struggle to overcome 216;communicative capital and 211–16;contemporary society, ‘time is money’ in 207;disability, Bourdieu to, application of 213–14;disability, time in production of 208; disabilitystudies, everyday world and 206–7; disabledpeople’s everyday embodied experience 206;disabled people’s movement, ‘communicationdisablement’ and 217; disablism 206; everydayreality, perception of 206; impairment,Merleau-Ponty and sociology of 206;industrialisation 208–9; legitimate bodilyperformances 214–15; phenomenologicalperspective on 209–10; politics of space,development of a 208; Pygmalion (Shaw, G.B.)214; socio-temporal corporeal worth, denial of210; speech and language therapy 214; speed,valorisation of 209; temporality 208; time andsocial model of disability, critique of 207–11

Spivak, Gayatri Chakravorty 120, 365sport, physical activity and disability 11, 391–401;

Activity Alliance 392; Care Act (UK, 2014.)398; Disability Rights UK 396; disability sport391–6; DSAs (Disabled SupportersAssociations) 392; English Federation ofDisability Sport 392; future directions400–401; Glasgow Commonwealth Games.(2014) 392, 393; IOC (InternationalParalympic Committee) 392, 394–5; LondonParalympics (2012) 393; physical activity,disability and 396–400; Physical ActivityGuidelines Advisory Committee 396; PhysicalActivity Guidelines for Americans 396; Psychologyof Sport and Exercise 399; Public HealthEngland 396, 397; research on disability, sport

and physical activity, growth of 391; SedentaryBehaviour Group (UK) 398; Toronto ParapanAmerican Games (2015) 393; UN (UnitedNations) Convention on the Rights of Personswith Disabilities (CRPD) 401

Spriggs, M. 152Spurway, K. and Soldatic, K. 243SRH (sexual and reproductive health care)

services 443Stafford, B., Cordon, A., Sainsbury, R. and

Thornton, P. 256Stalker, K. xvii, 8, 131, 158–69Stalker, K. and Lerpiniere, J. 160Stalker, K., Ferguson, I. and Barclay, A. 190standpoint theory 39Stanford Patient Education Research Centre

135–6Staniland, L. 114Stannett, P. 362Steel, H. 75Steel, L. and Dowse, L. 468Stein, M.A. 81Stein, M.A. and Lord, J.E. 76Steinbock, B. 356STEM (experimental artificial intelligence

implant) 404Stephens, L., Ruddick, S. and McKeever, P. 5Stevenson, D. and Farmer, P. 255Stevenson, Robert Louis 342, 343Stienstra, D. xvii, 12, 314, 453–64stigma, impact of 102Stigma: Notes on the Management of Spoiled Identity

(Goffman, E.) 339, 340Stiker, H.-J. 6, 15, 36–7, 40, 45, 46, 222, 267,

271Stobart, G. 268Stoddard, George D. 297Stoddard Holmes, M. 339Stone, D.A. 18, 250Stone, E. and Priestley, M. 130Stone, Emma 323storytelling, remaking centre through 463–4Straimer, C. 307Strauss, A.A. and Werner, H. 298Strauss, A.L. 175Strauss, Alfred A. 297Strauss syndrome 298Strega, S., Callahan, M., Rutman, D. and

Dominelli, L. 469Strickland, P. 253Strnadová, I. and Walmsley, J. 131Strnadová, I., Walmsley, J., Johnson, K. and

Cumming, T.M. 131The Structure of Scientific Revolutions (Kuhn, T.):

human rights, disability and 76Stuart, O. 5Stubblefield, A. 468

Index

539

Stucki, G. and Bickenbach, J. 60Stucki, G., Bickenbach, J. and Melvin, J. 55, 64Stucki, G., Bickenbach, J., Selb, M. and Melvin,

J. 55, 64Stucki, G., Prodinger, B. and Bickenbach, J. 55,

64submission, self-loathing and 123–4Sumner, L.W. 354, 357Sundance Film Festival 446survivor-led research, development and impact of

191–2Sutherland, A. 19, 215Sutherland, D. 21Swain, J. and French, S. 21, 95, 146, 227, 368Swain, J., Griffiths, C. and Heyman, B. 368Swain, P. and Cameron, N. 480Swan, M. 410Swartz, L. and Marchetti-Mercer, M. 237Swartz, L. and Schneider, M. 327Swift, K. 469, 470sympathy, compassion and pity 93–4Synge, John Millimgton 342, 343Szasz, T.S. 19, 191, 192

A Tale of Two Cities (Dickens, C.) 265Tang, L. 195Tateiwa, S. 15taxonomic social order, marginalised members of

48Taylor, C. 153–4, 267Taylor, D. and Bury, M. 136Taylor, M.G. 456Taylor, S. 159, 161, 164, 349Taylor, S.J. 483teacher education 275–6technology: alternative communication

technology, provision of 208; assistivetechnologies 410–11; D/deaf identity and150–51; embodied technologies ortechnologised bodies? 409–10; humans and,Upgrade (film) and dynamic between 415;normalisation, micro-technologies of 46–8

Telethons: Spectacle, Disability, and the Business ofCharity (Longmore, P.) 378

Tepper, M.S. 446–7Terrorist Assemblages (Puar, J.) 50Tew, J. 189, 190, 191, 192Tew, J., Gould, N., Abankwa, D., Barnes, H.,

Beresford, P. et al. 192theory: ANT (actor-network theory) 407–8;

disability theory, philosophical ontology and349–52; Intergroup Contact Theory 134;intersectionality theory 316; of performativity39–40; ‘personal tragedy theory’ 94–5;sexuality and disability, note on 437–8;standpoint theory 39; theorisation about‘learning disability’ 161–3, 167

Thiruchelvam, D., Charach, A. and Schachar, R.482

Thomas, Carol 5, 7, 20, 24, 90, 102, 103, 104,112, 113, 114, 133, 146, 155, 160, 165–6,168, 180, 184, 267, 338, 349, 371, 422, 423,424, 425–6, 427, 471

Thomas, G.M. 483Thomas, G.M. and Sakellariou, D. 5Thomas Aquinas 95, 96Thompson, A, Bryson, M. and De Castell, S. 446Thompson, D. 502Thompson, D., Ryrie, I. and Wright, S. 501, 502Thompson, E.P. 208Thomson, R.G. 24, 35, 446Thornton, P. 212Thornton, P. and Lunt, N. 256, 257Thorpe Jr., R.J., Weiss, C., Xue, Q.-L. and

Fried, L. 456Thurston, M. 224Thurston, M., Thurston, A. and McLeod, J. 224time: commodified time 209; contemporary

society, ‘time is money’ in 207; social model ofdisability and, critique of 207–11

Timmons, M. 352Tinson, A., Aldridge, H., Barry Born, T. and

Hughes, C. 4, 253Titchkosky, Tanya 42–3n1, 219, 226, 227, 267,

369Todd, L. 368Todd, S., Evans, G. and Beyer, S. 496Tolman, D.L. and Diamond, L.M. 437Tomasone, J., Flood, S., Ma. J., Scime, N.,

Burke, S., Sleeth, L. and Marrocco, S. 399Tomlinson, S. 266, 270Tonmukayakul, U., Shih, S.T.F., Bourke-Taylor,

H., Imms, C. et al. 480Too Late to Die Young: Nearly True Tales from a

Life (Johnson, H.M.) 118Topliss, E. and Gould, B. 17Toronto Parapan American Games (2015) 393Torr, J., Strydom, A., Patti, P. and Jokinen, N.

498Tøssebro, J. and Kittelsaa, A. 25Touko, A., Mboua, C.P., Tohmuntain, P.M. and

Perrot, A.B. 443Touraine, Alain 270, 277Towers, B. 253Townsend, P. 19, 127, 177Townsend, R.C., Cushion, C.J. and Smith, B.

391Townson, L., Macauley, S., Harkness, E.,

Chapman, R., Docherty, A. et al. 161Trani, J.-F., Bah, O., Bailey, N., Browne, N.,

Groce, N. and Kett, M. 327Trani, J.-F., Bakhshi, P., Bellanca, N., Biggeri,

M. and Marchetta, F. 195transdisciplinarity 34, 39

Index

540

‘transferring out,’ option of 502Transforming Your Care programme (Health and

Social Care Board, Northern Ireland) 289Traustadóttir, R. 81, 484Traustadóttir, R. and Sigurjónsdóttir, H.B. 481,

485Treasure Island (Stevenson, R.L.) 342Tregaskis, C. 114, 274Tremain, S.L. 24, 41, 221, 222, 338, 339Trent, J.W. 467, 468Trieschmann, R.B. 437Trotter, R. 313Trotter, R.T.II, Üstün, T.B., Chatterji, S.,

Rehm, J., Room, R. and Bickenbach, J. 59Troyna, B. 272true or false statements 350Truman, C., Mertens, D.M. and Humphries, B.

130‘Trying Out the Wheelchair’ (Winance, M.) 410TUC (Trade Union Congress, UK) 251, 255Tucker, B. 411Turk, D.C. 176Turner, B.S. 73, 369, 412Turner, D. and Blackie, D. 379, 380–81Tuttle, D.W. and Tuttle, N.R. 224Tyler, I. 90, 314Tyler, Imogen 239, 240–41, 242, 244

Uloba in Norway 289UN Committee on Rights of Disabled Persons:

independent living 285, 481; long-termdisabling conditions, disability theory and 175;migration and disability, boundarymaintenance and 307, 311

UN Convention on Rights of Persons withDisabilities (CRPD) 72, 73, 76–80, 81–2, 84,281, 290, 291; ageing, intellectual disabilityand 492; Article 33-National Implementationand Monitoring 68; Article 31-Statistics andData Collection 68; binding internationalConventions, Council of Europe and 87;binding international Conventions.Organization of American States and 87;comments, statements and guidelines 87–8;Committee on the Rights of Persons withDisabilities, comments, statements andguidelines 87–8; CPRD Committee 79, 80,82; deaf identities in disability studies 155, 221,225; developing countries, disability in 321,322, 323, 326, 328, 330; disability history,social model and 377, 481; human rights,disability and 76–80, 81–2; human rightsmodel of disability? 81–2; ICF and 65–7;implementation of 78–9; international humanrights instruments 87; key elements 77–8; keythemes from 80–83; legal status and influence79; migration and disability, boundary

maintenance and 306, 307, 309, 311;monitoring of 79; ‘nothing about us withoutus,’ embodiment of 80–81; ‘paradigm shift’ inhuman rights 76–7; sexuality and disability444, 445, 448; sport, physical activity anddisability 401; United Nations Conventions87; vulnerability to empowerment? 82–3

UN (United Nations) 3, 75, 80, 83, 498;Committee on the Protections of the Rightsof All Migrant Workers and Members of TheirFamilies 307; Convention of the Rights ofPersons with Disabilities (2008) 240;Convention on the Rights of People withDisabilities (CRPD) and Optional Protocol 4,7, 22, 79, 266; conventions, list of 87;Declaration on the Rights of Disabled Persons(1975) 17; Declaration on the Rights ofMentally Retarded Persons (1971) 17;Economic and Social Affairs, Department of245; Economic and Social Council 500;International Year of Disabled People (1981)17, 18, 75; M! Principles (1991) 75, 77, 80;Office of the High Commissioner for HumanRights and the Inter-Parliamentary Union77–8; Permanent Forum on Indigenous Issues245; Refugee Convention (1951) 307; SDGs(Sustainable Development Goals) 245; SpecialRapporteur on the Rights of Persons withDisability 245; Standard Rules on theEqualization of Opportunity for People withDisabilities (1993) 22; UN Enable 22, 76;UNAIDS in developing countries 322;UNESCO (United Nations Educational,Scientific and Cultural Organization) 275, 329;UNHCR Executive Committee Conclusionon Refugees with Disabilities and OtherPersons with Disabilities 306, 307; UNICEF(Children’s Fund) 275; Universal Declarationof Human Rights (UDHR) 73–4, 74–5, 78;World Programme of Action ConcerningDisabled Persons 18

UN (United Nations) General Assembly:developing countries, disability in 329;sexuality and disability 444; social model ofdisability 18, 22, 74

Understanding Disability (Oliver, M.) 273Underwood, K. 267Ungerson, C. 484UNited States: Institute of Education Sciences 46;

National Longitudinal Transition Study (USDept of Education) 46; Rehabilitation Act 17

United States: Agency for InternationalDevelopment 329; Bill of Rights in UnitedStates Constitution (1791) 72; Death, USCommittee on Joint Causes of (1945) 59;Education of Handicapped Children Act (US,1975) 298; National Longitudinal Transition

Index

541

Study (US Dept of Education) 46; Society forDisability Studies 20

Universal Credit (UK): long-term disablingconditions, disability theory and 186, 285, 286

universalism, human rights and 73–4Upgrade (Leigh Whannell film) 404, 415UPIAS (Union of the Physically Impaired Against

Segregation) 4, 8, 15–16, 17, 19, 20, 21, 24,58, 258, 273, 424; Fundamental Principles ofDisability (1976) 127, 128–9, 225; learningdisabilities, theorisation in disability studies158–9, 163; psycho-emotional disablism 103,112; research on disablement and impairment130, 136–7

Ustün, T.B., Ayuso-Mateos, J.L., Chatterji, S.,Mathers, C. and Murray, C.J. 322

Üstün, T.B., Chatterji, S., Bickenbach, J.E.,Trotter, R.T.II and Saxena, S. 59

UTIs (urinary tract infections) 323

valuation hierarchies 123–5Vaughn, M., Silver, K., Murphy, S., Ashbaugh,

R. and Hoffman, A. 441Vehmas, S. xvii, 3–12, 348–59Vehmas, S. and Curtis, B. 354Vehmas, S. and Mäkelä, P. 166, 351Vehmas. S. and Shakespeare, T. 351Vehmas, S. and Watson, N. 5, 134, 222, 227Venkatapuram, S. 359Venn, C. 366Verbrugge, L. and Jette, A.M. 57–8Verbrugge and Jette model of disability 57–8,

69n4Vertovec, S. 305, 306Villa, R.A., Tac, L.V., Muc, P.M., Ryan, S.,

Thuy, N.T.M., Weill, C., Thousand, J.S. 326Ville, L., Crost, M., Ravaud, J.-F. and Tetrafig

Group 146Viola, S. and Moncrieff, J. 255vision impairment 219; see also blindness/

sightednessVital Signs: Crip Culture Talks Back (Harlan Hahn

documentary film) 46, 49, 52–3Vorhaus, J. 73

Wacquant, L. 244Waddell, G. and Aylward, M. 256Waddell, G. and Burton, A.K. 255Waddington, L. 78Wade, H. 440Wadey, R. and Day, M. 397Waitzkin, H. 175Walby, S., Armstrong, J. and Strid, S. 309Walker, A. and Walker, C. 497Walker, C., Walker, A. and Ryan, T. 497Walker, R. and Wiseman, M. 253Walker-Hirsch, L. 441

Wallcraft, J. and Hopper, K. 195, 197Walmsley, J. 131, 158, 161, 162, 169n2, 468,

495, 496Walmsley, J. and Johnson, K. 162, 166, 167Waltz, M. 339Wang, C.C. 322Warburton, N. 348Ward, K., Amas, N. and Lagnado, J. 313Warin, M., Baum, F., Kalucy, E., Murray, C. and

Veale, B. 209Warnock Report on Special Educational Needs in

UK (1978) 265–6Warren, J., Garthwaite, K. and Bambra, C. 285Washington Group 69n6, 328Wasserman, D. 356Wasted Lives (Bauman, Z.) 267Watermeyer, B. 103, 179, 368Watermeyer, B., McKenzie, J. and Swartz, L. 237Wates, M. 22Watson, N. xvii, 3–12, 25, 113, 127–38, 146,

155, 168, 193, 194, 222, 227, 338Watson, N., McKie, L., Hughes, B., Hopkins, D.

and Gregory, S. 423, 485Watson, N., Thomas, C. and Roulstone, A. 5WCA (Work Capability Assessment) 285We Are Spartacus (Centre for Welfare Reform,

UK) 251Webber, R., Bowers, B. and Bigby, C. 499, 502Weber, Max 208weblinks for disabled families 491Weeks, J. 18Weinberg, A. and Doyle, N. 255Welfare Conditionality Project, UK 257Welfare Reform Act (UK, 2012) 285The Well of the Saints (Synge, J.M.) 342Wellman, Beth 297Wendell, S. 102, 112, 209, 422, 427, 429, 471Werner, Heinz 297West, K. 282Wheatley, E. 222Wheeler, A., Archbold, S., Gregory, S. and

Skipp, A. 151Whitburn, B. xviii, 8–9, 219–31, 225, 229White, Marie 463Whitehead, M. 177Whiteneck. G., Charlifue, S., Gerhart, K.,

Overholser, J. and Richardson, G. 64Whitfield, H.W., Venable, R. and Broussard, S.

458WHO (World Health Organization) 3, 25, 58,

119, 172, 190, 306, 321, 437–8, 498; CBRGuidelines (2010) 330; Constitution of (1948)59; developing countries, disability in 322,325, 329; Disability and Rehabilitation Team22; health professionals, ICF and 59–60; healthprofessionals and the ICF 59–60; ICDH-2 58,59; ICF, disability studies and 67–8; ICF

Index

542

Activities and Participation classification 63–4;ICF classifications 60–61; ICFconceptualisation 61–5; ICF-Disability,phenomenon of 61, 62, 65, 66, 68–9n2;ICIDH-Disability 63; ICIDH-Handicap 63;International Classification of Disease (1976)17–18; International Classification ofFunctioning, Disability and Health (ICF) 7, 22,25, 55, 377; International Classification ofImpairment Disability and Handicap (ICIDH)17–18, 58, 59, 61, 63–4; ‘Rethinking Carefrom Disabled People’s Perspectives’ 22;UNCRPD, ICF and 65–7, 67–8; WorldHealth Survey (2011) 325; World Report onDisability 119

Wightman, C. 496Wiliam, D., Lee, C., Harrison, C. and Black, P.

268Wilkerson, A., Fisher, J. and Fletcher, W. 296Wilkinson, H., Kerr, D., Cunningham, C. and

Rae, C. 501, 502Wilkinson, R. and Pickett, K. 190Williams, C. 371Williams, F. 485Williams, G. 20, 178Williams, G. and Wood, P. 175Williams, Raymond 274–5Williams, S. and Bendelow, G. 206Williams, S.J. 24, 25, 137, 193, 194, 412Williams, T.R., Hunt, E., Papathomas, A. and

Smith, B. 398, 399Williams, T.R., Smith, B. and Papathomas, A.

398, 399Williams, Z. 111Willis, A.M. 443Wilson, J.C. and Lewiecki-Wilson, C. 338Wilton, R. 40Wilton, R., Hansen, S. and Hall, E. 312Winance, M. 406, 410Windrush scandal (UK) 312Wolbring, G. 231Wolfe, Cary 120, 121, 125n1–2Wolfe, P.S. 439Wolfensberger, W. 18, 224, 226, 497, 502Wolff, J. and de-Shalit, A. 358Woll, B. and Ladd, P. 149Women’s Refugee Commission 308, 316Wood, Philip 17

Woodgate, R.L. and Degner, L.F. 482Work and Pensions Department (UK):

employment, disabled people and 250, 255,257, 258, 259; independent living 285, 286,290

Work Capability Assessment (UK) 111, 244,251

Work Programme (UK), Work Choice and 256Work-Related Activity Group (UK) 257working conditions, changes in 254–5World Bank 3, 23, 275, 306, 321, 326; Disability

Inclusion and Accountability Framework 329;Social Analysis and Disability: A GuidanceNote (2007) 23

World Blind Union 225, 328World Federation of the Deaf 328World Report on Disability (WHO and World

Bank, 2011) 306, 321Wright Mills, C. 364, 366, 372Writings on an Ethical Life (Singer, P.) 120WTO (World Trade Organization) 3

X-Men (Marvel Studios film) 51

Yates, S., Dyson, S. and Hiles, D. 158, 165Yeo, R.A. 23, 313, 316Youdell, Deborah 272Young, Iris Marion 24, 98, 109, 113, 115, 213,

215Yousafzai, A.K., Edwards, K., D’Allesandro, C.

and Lindström, L. 445Yu, N.G. 311Yu, Y., McGrew, J.H., Rand, K.L. and Mosher,

C.E. 480

Zablocki, I. 446Zaidi, A. and Burchardt, T. 327Zan, H. and Scharff, R.L. 480Zarb, G. 131, 133Zarb, G. and Nadash, P. 22, 288Zarb, G. and Oliver, M. 22Zarhin, D. 411Zimbabwe Parents of Handicapped Children’s

Association 325Zimmerman, C. and Kiss, L. 306Zola, Irving K. 66–7, 119, 428Zongjie, Y., Hong, D., Zhongxin, X. and Hui,

X. 325

Index

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Routledge Handbook of Disability Studies; Second Edition

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