Bridging the Humanitarian – Disability Divide from Gaps to

Changes in Policy and Practice

Background

Today, more than 1 billion people live with some form of

disability, an estimated 15% of the global population (World

Health Organization, 2011: 11). This percentage translates to

over 6 million people living with disabilities among the 42.5

million people displaced by conflict (United Nations High

Commissioner for Refugees, 2011a: 3). People uprooted by

conflict, however, face additional challenges and threats. They

can acquire new impairments as a result of injuries from

landmines, wounds from armed conflict, and war-related trauma

(Women’s Refugee Commission, 2008a: 8). In addition, those living

with disabilities may be the least able to flee to safety

(International Federation of the Red Cross and Red Crescent

Societies, 2007: 99) and the least likely to return home when it

is safe to do so.i

Responding to conflict and displacement has always been

problematic for humanitarian service providers. Insecurity,

cultural and language differences, access to the affected

populations, the myriad of emergency survival needs, and resource

constraints impede effective humanitarian response. Understanding

and addressing the unique needs of women, men, girls, and boys

has itself been problematic and recognizing the needs of sub-

groups within the broader affected population, such as those of

persons with disabilities, has been largely neglected.

Over the past decade the humanitarian community has struggled to

mainstream gender within its policies and programs and more

recently has attempted to mainstream such issues as child

protection and disaster risk reduction. The community has yet to

mainstream disability and recognize organizational and sectoral

responsibilities for promoting access and inclusion for those

with disabilities across all programs and services. Too often

services for those with disabilities remain on the periphery of

humanitarian response, tasked to specialized disability providers

whose programs are generally limited to the provision of

assistive devices, community-based rehabilitation, and psycho-

social support. While these services are valued and necessary,

seldom have the more mainstream service providers sought to

consult and include persons with disabilities in their health,

shelter, water and sanitation, education, protection and

livelihood programs.

Research

Building the Evidence Base

In order to address the gaps in attention and knowledge about

persons with disabilities affected by conflict, the Women’s

Refugee Commission (WRC) undertook a research scoping exercise

focused on refugees with disabilities in five country settings in

2007 – 2008. The project, co-funded by the United Nations High

Commissioner for Refugees (UNHCR), included qualitative field

research undertaken by partner organizations present in each

target country under the guidance and supervision of the WRC.

Field Research Methodology

The Women’s Refugee Commission prepared a set of guidelines for

carrying out the field studies outlining the information required

and research methodologies (Women’s Refugee Commission, 2008a: 48

– 60). These included the sectors to be covered: protection,

participation/community inclusion, access to and appropriateness

of mainstream services (including shelter, water and sanitation,

food and nutrition, non-food item distributions, health care,

education, vocational training and adult literacy programs,

income generation and employment programs, and psychosocial

programs), and specialized, targeted services for those with

disabilities (Women’s Refugee Commission, 2008a: 63 – 65).

Methodologies employed included focus group discussions with

refugees with disabilities, families/caregivers of persons with

disabilities, community leaders, and non-governmental

organization (NGO) service providers, as well as semi-structured

discussions at the household and program level, structured

interviews with UNHCR, NGO and host government staff, and data

collection from secondary data sources such as disaggregated

population data.

Locations were selected based on geographic diversity and

inclusive of both camp-based and urban refugee populations. Some

locations were included because of local interest on the ground

or previous connections to the local actors. Selected field sites

were the Bhutanese refugee camps in the Jhapa and Morang

districts of South East Nepal, where the research was carried out

by the Caritas - Nepal refugee coordinator of the disability

project; the Burmese refugee camps along the Thai-Burma border

with research led by a volunteer working with World Learning in

collaboration with the Karen Women’s Organization; the Khazar

camp, home to Somali refugees, in Yemen with research carried out

by local Disabled People’s Organization (DPO), Center for People

with Special Needs; the urban Iraqi refugee population in Amman,

Jordan with research led by Mercy Corps in collaboration with a

DPO, the Landmine Survivors Network; and in the provinces of

Esmeraldas, Sucumbíos, Carchi, Pinchincha, and Imbabura in

northern Ecuador with research carried out by the Hebrew

Immigrant Aid Society (HIAS).

Limitations

Time constraints and budget limitations impacted site locations

and research partners. No assessment, for example, was conducted

in Africa although input was solicited and included from UNHCR

staff working in the Dadaab camps in Kenya (Women’s Refugee

Commission, 2008a: 12 -13, 16, 30 -31, 33, 35) and from HelpAge

International in the Internally Displaced Persons (IDP) camps in

West Darfur (Women’s Refugee Commission, 2008a: 19, 21), Sudan.

Training of research partners was also insufficient which led to

differences in the quality of field data collected. Further, the

overall sample size was too small to allow for conclusions to be

generalized across like settings. In addition, the engagement of

persons with disabilities and DPOs as researchers was limited to

three of the five settings. The lack of available and consistent

data on refugees with disabilities in each location also impeded

subject identification and hindered the development of

appropriate program responses. Conclusions drawn from the

research recognize these limitations and the need for more

detailed investigation in specific contexts, but nonetheless

provide some evidence of the gaps in access and inclusion

experienced by persons with disabilities.

Gaps in Access and Inclusion

The research found that refugees with disabilities were often

over-looked and neglected. Displacement often led to increased

isolation and the absence of previously available services and

caregivers. As a result of prevailing attitudinal barriers, the

contributions and capacities of refugees with disabilities were

seldom recognized or utilized.

The WRC research identified service gaps, major shortcomings

within the humanitarian sector, and significant protection risks

for refugees with disabilities in the locations studied (Women’s

Refugee Commission, 2008a: 11 – 35). Identification of persons

with disabilities was often weak and terminology used and data

collected was inconsistent (Women’s Refugee Commission, 2008a: 14

– 15) thereby impacting understanding of the need and the

development of program responses. Humanitarian service providers

paid little attention to refugees with disabilities and rarely

designed and implemented their programs in ways to make them

disability inclusive. Specialized services were also generally

lacking and, when available, tended to focus on those with

physical impairments, seldom to those with sensory impairments

and almost never for those with mental or intellectual

impairments (Women’s Refugee Commission, 2008a: 12). Specialized

agencies, where present, were largely focused on direct service

provision for persons with disabilities, rather than ensuring

that mainstream agencies were promoting access and inclusion for

this group. Local, host country Disabled People’s Organizations

were not engaged and linked with to offer social support to the

refugees with disabilities nor for technical assistance to the

NGO service providers. Finally, there were few opportunities for

refugees with disabilities to participate in refugee leadership

structures and community life (Women’s Refugee Commission, 2008a:

28 – 32).

Rethink

Tools for Fieldworkers

The WRC produced a disabilities resource kit for fieldworkers

(Women’s Refugee Commission, 2008b) to address these research

findings and to provide guidance on operationalizing disability

inclusion across the various humanitarian sectors. The research

and resource kit were launched at several public events in New

York, Washington, DC, and Geneva in 2008, distributed to

practitioner organizations around the world, and presented at

numerous meetings, workshops and conferences. More than 5,000

additional copies were downloaded from the WRC website from 2010

- 2012.ii This publication has proved a valuable resource for

organizations in the development of their own operational

guidance, such as the UNHCR Need to Know Guidance on Working with Persons

with Disabilities in Forced Displacement (UNHCR, 2011b), and has been used

to develop practical actions for context specific protection

mainstreaming.iii The WRC, however, wanted not only to get the

information out to the field but to ensure that it resulted in

changes in practice and improvements in the lives of refugees

living with disabilities.

Mobilizing for Policy Development

The starkness of the WRC’s research findings prompted the

organization to assess steps needed to promote change in

practice. Enacting appropriate policy guidance was deemed an

important prerequisite to influencing global humanitarian

practice in a sustainable and systemic way. As such, the WRC

focused on the promotion and adoption of a UNHCR Executive

Committee Conclusion on refugees with disabilities. A Conclusion,

when adopted by UNHCR’s Executive Committee, that is, its

governing body of Member States, serves as “soft law” and guides

subsequent policy development. “Although not formally binding,

they [Executive Committee (or EXCOM) Conclusions] are relevant to

the interpretation of the international protection regime. ExCom

Conclusions constitute expressions of opinion which are broadly

representative of the views of the international community. The

specialist knowledge of ExCom and the fact that its Conclusions

are taken by consensus add further weight”iv

The WRC engaged in multiple strategies over the course of several

months to move the idea of a UNHCR Executive Committee Conclusion

forward. The WRC built and spearheaded a coalition of NGOs

interested in advocating for the Conclusion.v Collectively, the

NGO coalition ensured buy-in within UNHCR, lobbied Member States,

identified champions among a number of governments, and drafted

and lobbied for specific Conclusion language. The “Conclusion on

refugees with disabilities and other persons with disabilities

protected and assisted by UNHCR” was adopted by UNHCR’s Executive

Committee on October 12, 2010 (UNHCR, 2010) and addresses many of

the findings of WRC’s research.

Resolve

From Policy to Practice

The UNHCR EXCOM Conclusion represents an organizational

commitment to non-discrimination and respect for the rights of

persons with disabilities in programs for refugees and displaced

persons. The actual realization of such a commitment for persons

with disabilities in different contexts, however, requires wider

organizational change, from systems and processes at headquarters

through to field levels, and even change in attitudes among

staff, partners and communities. As such, UNHCR has embarked on a

process of organizational capacity development to promote the

implementation of this Conclusion.

In order to operationalize the Conclusion on refugees with

disabilities, UNHCR partnered with Handicap International to

produce, Need to Know Guidance on Working with Persons with Disabilities in Forced

Displacement (UNHCR, 2011b). This guidance provides an introduction

to, and advice on key actions, for field practitioners to ensure

that persons with disabilities are not excluded in program

decision making and have their needs met on an equal basis with

others. Communities, staff and partners working with refugees

often report that persons with disabilities are not actively

excluded from their programs. The guidance highlights, however,

that such exclusion, whether “inadvertent or purposeful: in

either case, nevertheless, it is discriminatory” (UNHCR, 2011b:

4) It goes further to provide key actions for UNHCR field offices

to undertake to ensure non-discrimination and participation

across a variety of sectors and activities, including

programming; identification and registration; referral systems;

awareness raising; prevention and response to exploitation,

violence and abuse; education; information dissemination and

communication; food and non-food item distributions; durable

solutions; shelter and housing, and finally transportation

(UNHCR, 2011b).

Capacity Development in the Field

Guidance development also requires complementary actions to

ensure understanding and usage in specific contexts. Towards this

goal, the WRC in partnership with UNHCR designed and piloted

field-based disability inclusion workshops aimed at raising

awareness on disability, educating staff and partners on the

Convention of the Rights of Persons with Disabilities (CRPD), and

developing specific actions to put the guidance into practice in

their given contexts and sectors of work. Workshop participants

included UNHCR and NGO staff, host country DPOs and refugees with

disabilities. Collectively participants identify barriers to

disability inclusion across programs and develop action plans to

make services more inclusive. To date workshops have been

conducted in New Delhi, India; Kampala and Hoima, Uganda; Cox’s

Bazaar, Bangladesh; Mae Hong Son, Thailand; Damak, Nepal; and

Jijiga, Ethiopia, reaching over 270 humanitarian actors.

Critical to the success of the workshops is the active

participation of refugees with disabilities, bridging the gap

between them and program implementers, and highlighting their

skills and capacities. This is done through a twin-track approach

(Christian Blind Mission, 2012: 6) of specific capacity building

for persons with disabilities, and mainstreaming their inclusion

in the workshop activities. Pre-workshop consultations with

refugees with disabilities inform and shape workshop content, but

also provide an opportunity for refugees with disabilities to

formulate their own ideas for change. They are then provided a

forum to present their ideas, as well as to participate in the

learning and action planning with UNHCR and partner staff, and

the refugee community. This approach ensures that the key actions

identified are based on the expressed needs and ideas of those

affected. By highlighting their own ideas in the workshop,

attitudinal change among participants is promoted towards viewing

refugees with disabilities as partners, not just beneficiaries,

with skills and capacities to contribute to organizations and the

community.

We the CMC/BMC are delighted as we have got a workshop with

disabilities. Things we liked (were) participation of

persons with disabilities; they are honored as human beings

in the workshop; (and) group discussions with all to solve

problems.

(Comments from refugee Camp and Block Management Committee

members in the workshop evaluation, Nayapara Refugee Camp,

Cox’s Bazar, Bangladesh)vi

Local DPOs are also involved in the workshops with the aim to

strengthen linkages between refugees with disabilities and the

host country disability movement. This also builds a foundation

for future collaboration between UNHCR, its implementing partners

and DPOs in order to better meet the needs of refugees with

disabilities through advocacy on inclusion in host country

policies and programs.

Field-based Action Plan Implementation

Each field-based workshop concludes with the development of an

action plan to provide impetus and concrete activities for

forward movement in the near term on promoting disability

inclusion across programs and services. While some actions

require little, if any, financial support, others require

resources to modify programs, implement new projects, and

undertake physical adaptations to facilities. The workshops and

action plans are leading to real change on-the-ground. In Uganda,

the Association of Refugees with Disabilities has been recognized

by UNHCR as a representative organization within the refugee

community, and the Refugee Law Project has sourced funds to begin

a poultry income generation project with the Association. In

addition, there is now greater engagement of the National Union

of Disabled Persons of Uganda (NUPIPU) on refugee issues, and

they report including refugees with disabilities in the draft

CRPD Shadow Report for Uganda. The Refugee Law Project has also

purchased software for people with vision impairments for their

computers in the refugee resource center and will soon launch a

Global Disability Rights Library. Meanwhile, in New Delhi, UNHCR

has strengthened ties with the local NGO, Family of the Disabled,

which has specific expertise in supporting children with

disabilities to attend school. UNHCR has also moved its

registration office to a more accessible location and is planning

to move refugee reception services to the outreach center in West

Delhi which is closer to the neighborhoods where refugees with

disabilities reside.vii

Global Implementation of UNHCR’s Conclusion on Refugees with Disabilities

These pilot training and action planning workshops and follow-up

evaluations have provided some valuable information and lessons

for the global implementation of UNHCR’s EXCOM Conclusion on

Refugees with Disabilities. WRC is now working with UNHCR to

identify and document the future actions required to ensure more

systematic and global implementation of their operational

guidance.

A number of principles need to be considered when seeking to

promote organizational change for disability inclusion. Firstly,

it is important for disability inclusion to be housed within the

organizational structure itself, if it is to be successfully

realized in systems and processes. In the case of UNHCR,

disability inclusion is considered an element of their Age,

Gender and Diversity (AGD) approach coordinated by the Division

of International Protection. UNHCR’s guidance on working with

persons with disabilities has been developed as part of a Need to

Know guidance series, which provides field staff and partners

with an essential introduction to, and action-oriented advice on,

a range of protection issues relevant for this approach (UNHCR,

2012a).

Secondly, activities must support the institutionalization of

disability inclusion, through integration into organizational

systems, policies and practices, ultimately promoting sustainable

change at country operations levels. One example of how UNHCR is

addressing this is through the inclusion of indicators in their

organizational standards, such as their results framework (UNHCR,

2012b) and the accountability framework for AGD mainstreaming and

associated targeted actions (Groves, 2012).

Thirdly, activities should recognize and capitalize on

intersections with other key organizational policies or

strategies, as all are relevant to persons with disabilities. To

date, the UNHCR Sexual and Gender-Based Violence (SGBV) Strategy (2011 – 2016)

(UNHCR 2011c) and Education Strategy (2012 – 2016) (UNHCR 2012c) have

highlighted persons with disabilities in action areas or key

activities, and the Framework for the Protection of Children (UNHCR 2012d)

has represented children and adolescents with disabilities from

an AGD mainstreaming perspective. Inclusion of persons with

disabilities in the SGBV strategy has seen greater attention at

Country Operations levels. One such example comes from Nepal

where UNHCR recently supported training on disability inclusion

in SGBV prevention and response for staff and partners

organizations.viii

Finally, as disability inclusion in the humanitarian sector

remains a new and evolving field, we must prioritize learning and

evaluation, particularly for sector specific strategies where

there is a gap in the current evidence base. Critical to the

implementation of UNHCR’s guidance must therefore be ongoing

evaluation at headquarters through planning and reporting

processes, as well as field level impact evaluations which

prioritize the voice and perspectives of persons with

disabilities. Based on this, organizations can identify what

works where and why, allowing continued improvement not only

internally, but also within the wider humanitarian sector.

Engaging the Disability Movement

The Disability Movement and DPOs play a critical role in bridging

the humanitarian – disability divide. Despite many host countries

having ratified the CRPD, refugees and displaced persons with

disabilities are often excluded from CRPD implementation and

monitoring processes (Crock, McCallum & Ernst, 2011). They rarely

have contact with host country DPOs, and most agencies working

with them require greater awareness of the CRPD and its

processes. While some positive progress has been made with

respect to DPO engagement in emergencies and natural disasters,

they have limited involvement with refugee or asylum seeker

populations, and lack information about the situation of refugees

with disabilities in their countries.

WRC seeks to bridge this gap by engaging the disability movement

both at national and international levels. Host country DPOs have

participated in consultations and workshops in New Delhi,

Bangladesh, Uganda and Nepal, and in some cases are now actively

including refugee issues in their work. We have also sought to

increase dialogue on the issue within regional and international

forums, such as the Civil Society Forum at the 5th Conference of

State Parties to the CRPD; and have ongoing awareness raising and

training activities in partnership with Disabled People

International Asia-Pacific. We hope through this work, refugees

and displaced persons with disabilities will increasingly be

included in national policies and programs, and have their rights

are represented in CRPD monitoring mechanisms.

Institutionalization in the Humanitarian Sector – Continued Challenges

The humanitarian sector has demonstrated notable advancement in

their understanding and commitment to the rights of persons with

disabilities, with UN agencies and mainstream humanitarian actors

increasingly considering persons with disabilities in their work.

The UN Interagency Support Group for the Implementation of the

CRPDix; UNICEF’s Global Partnership on Children with

Disabilitiesx; the development of various humanitarian standards

and guidelines which consider persons with disabilities (The

Sphere Project, 2011)xi; and initiatives to promote inclusion in

country cluster mechanisms in selected emergencies (Perry & Héry,

2010: 38 – 39), are all positive examples of growing commitment

and progress in this field.

To date, however, there are no globally endorsed standards or

guidelines relating to persons with disabilities and disability

inclusion as a cross cutting issue in humanitarian response. As a

result, disability inclusion in the humanitarian sector remains

largely driven by disability-specific organizations, and not

adequately resourced, both technically and financially, within

the wider humanitarian system. Institutionalization of disability

inclusion as a cross cutting issue in the humanitarian sector

might, therefore, be further advanced through the coordinated and

systematic evaluation of existing strategies and guidelines,

collation and development of agreed standards, and targeted

advocacy to primary interagency coordination mechanisms. With

globally endorsed strategies and approaches, plans for capacity

development and human resourcing can be established and supported

within humanitarian assistance structures, capacitating a wider

range of sectors and agencies than currently.

The disability and humanitarian fields have seldom collaborated,

shared information, and jointly worked towards greater inclusion

for people with disabilities affected by crisis and conflict. The

result has been spotty service delivery and unmet needs. The

Women’s Refugee Commission seeks to promote access and inclusion

for refugees with disabilities in all humanitarian programs and

services. Our field-based and global desk research demonstrated

the protection risks and gaps in services for refugees living

with disabilities, providing an evidence base for guidelines and

greater commitments from UN agencies, like UNHCR. Through

technical advice and support to UNHCR, their partners and refugee

communities, we have been able to pilot and evaluate strategies

to support disability inclusion at field levels. These field

findings have the potential to inform wider organizational change

and the institutionalization of policy in UNHCR systems and

processes. They have also highlighted areas for further

development by the international community, including building

capacity of DPOs to represent refugees and asylum seekers in

human rights processes, and institutionalization of disability

inclusion within the wider humanitarian system. Significant

progress has already been made and, with coordination between key

sectors, there is great opportunity to make global advancements

to improve the well-being, inclusion and dignity of persons with

disabilities displaced by conflict and crises.

References

Christian Blind Mission. (2012). Inclusion Made Easy: A Quick Program Guide to Disability in Development, Australia.

Crock, M., McCallum, R., & Ernst, C. (2011). Where Disability and Displacement Intersect: Asylum Seekers with Disabilities, paper presented at the International Association of Refugee Law Judges World Conference,Bled, Slovenia, 7- 9 September 2011.

Groves, L. (2012). Working Together to End Discrimination and Ensure Equal Outcomes for All: Global Analysis of 2010-2011 Accountability Frameworks for AGDM and Targeted Actions, UNHCR, Geneva, Switzerland.

International Federation of the Red Cross and Red Crescent Societies. (2007). World Disaster Report 2007: Focus on Discrimination, Geneva, Switzerland.

Perry, A. & Héry, A. (2010). Disability in the UN Cluster System, Forced Migration Review, Issue 35, Oxford, United Kingdom.

The Sphere Project. (2011). The Sphere Handbook 2011: Humanitarian Charter and Minimum Standards in Disaster Response, Geneva, Switzerland.

UNHCR. (2010). Conclusion on Refugees with Disabilities and Other Persons with Disabilities Protected and Assisted by UNHCR, No. 110, LXI, 2010, Geneva, Switzerland.

UNHCR. (2011a). UNHCR Global Trends 2011, UNHCR, Geneva, Switzerland.

UNHCR. (2011b). Working with Persons with Disabilities in Forced Displacement: Need to Know Guidance 1, Geneva, Switzerland.

UNHCR. (2011c). Action against Sexual and Gender-based Violence: An Updated Strategy, Geneva, Switzerland.

UNHCR. (2012a). Age, Gender and Diversity Approach, Geneva, Switzerland.

UNHCR. (2012b). UNHCR’s Results Framework for 2012- 2013, Geneva, Switzerland.

UNHCR. (2012c). 2012 – 2016 Education Strategy, Geneva, Switzerland.

UNHCR. (2012d). A Framework for the Protection of Children, Geneva, Switzerland.

Women’s Refugee Commission. (2008a). Disabilities among Refugees and Conflict-affected Populations, New York, NY.

Women’s Refugee Commission. (2008b). Disabilities among Refugees and Conflict-affected Populations: Resource Kit for Fieldworkers, New York, NY.

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Notes

i At the conclusion of the war in Bosnia, for example, the elderly and people with disabilities were left behind in collective centers throughout Croatia when return when possible (based on the experiences of author Buscher working in Croatia from 1995 - 1998).ii Based on data from WRC website managers, Zuno, May 2012. iii Meeting with Gergey Pasztor, Protection Mainstreaming Coordinator, InternationalRescue Committee, 5 July 2012, in Geneva, Switzerland. iv UNHCR, Conclusions on International Protection, http://www.unhcr.org/pages/49e6e6dd6.html. v NGO Coalition members included; Handicap International, Christian Blind Mission, World Vision International, Disabled People’s International (DPI), Motivation, International Disability and Development Consortium (IDDC), Leonard Cheshire Disability, International Disability Alliance (IDA), and the Women’s Refugee Commission. vi Field visit report by Emma Pearce dated May 26, 2012, p. 7vii Based on a report by Emma Pearce on results of the workshops written in July 2012. viii Based on field visit report by Emma Pearce dated October 10, 2012ix http://www.un.org/disabilities/default.asp?id=1406, last accessed October 18, 2012x http://www.unicef.org/disabilities/index_65319.html, last accessed October 18, 2012xi Persons with disabilities are also being considered in draft standards and guidelines currently being developed by the Child Protection Working Group and World Health Organization respectively.