This article was downloaded by: [Queensland University of Technology]On: 28 May 2013, At: 19:38Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number: 1072954 Registeredoffice: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK

Social Work in Mental HealthPublication details, including instructions for authors andsubscription information:http://www.tandfonline.com/loi/wsmh20

Making Sense of Mental Illness as a FullHuman Experience: Perspective of Illnessand Recovery Held by People With aMental Illness Living in the CommunityKarleen Gwinner PhD a , Marie Knox PhD b & Mark Brough PhD ca Children and Youth Research Centre, Queensland University ofTechnology, Kelvin Grove, Australiab Centre for Disability Studies, University of Sydney, NSW, Australiac Social Work and Human Services, Faculty of Health, QueenslandUniversity of Technology, Kelvin Grove, AustraliaAccepted author version posted online: 13 Aug 2012.Publishedonline: 13 Mar 2013.

To cite this article: Karleen Gwinner PhD , Marie Knox PhD & Mark Brough PhD (2013): Making Sense ofMental Illness as a Full Human Experience: Perspective of Illness and Recovery Held by People With aMental Illness Living in the Community, Social Work in Mental Health, 11:2, 99-117

To link to this article: http://dx.doi.org/10.1080/15332985.2012.717063

PLEASE SCROLL DOWN FOR ARTICLE

Full terms and conditions of use: http://www.tandfonline.com/page/terms-and-conditions

This article may be used for research, teaching, and private study purposes. Anysubstantial or systematic reproduction, redistribution, reselling, loan, sub-licensing,systematic supply, or distribution in any form to anyone is expressly forbidden.

The publisher does not give any warranty express or implied or make any representationthat the contents will be complete or accurate or up to date. The accuracy of anyinstructions, formulae, and drug doses should be independently verified with primarysources. The publisher shall not be liable for any loss, actions, claims, proceedings,demand, or costs or damages whatsoever or howsoever caused arising directly orindirectly in connection with or arising out of the use of this material.

Social Work in Mental Health, 11:99–117, 2013Copyright © Taylor & Francis Group, LLCISSN: 1533-2985 print/1533-2993 onlineDOI: 10.1080/15332985.2012.717063

Making Sense of Mental Illness as a Full HumanExperience: Perspective of Illness and Recovery

Held by People With a Mental Illness Livingin the Community

KARLEEN GWINNER, PhDChildren and Youth Research Centre, Queensland University of Technology,

Kelvin Grove, Australia

MARIE KNOX, PhDCentre for Disability Studies, University of Sydney, NSW, Australia

MARK BROUGH, PhDSocial Work and Human Services, Faculty of Health, Queensland University of Technology,

Kelvin Grove, Australia

There is substantial current interest in building evidence aboutrecovery from mental illness in order to inform comprehensivepractice in health and social paradigms. This article presentsaccounts related to recovery and illness expressed by eight peo-ple through a Participatory Action Research project. The researchfacilitated entry to their subjective experiences of living in the com-munity as an artist with a mental illness. Specific concern wasraised of recovery as a clinical term with its requirement to meetdistinct conventions of recovery formulated by health workers. Thisarticle emphasizes that individualized values of mental illness andrecovery are interconnected to dynamic and complex perceptionsdrawn from experiencing life and experiencing things in their life.

KEYWORDS recovery, mental illness, art, evidence-based prac-tice, participatory action research

Address correspondence to Karleen Gwinner, PhD, Children and Youth ResearchCentre, Queensland University of Technology, Kelvin Grove, Qld, 4059, Australia. E-mail:karleen.gwinner@qut.edu.au

99

Dow

nloa

ded

by [

Que

ensl

and

Uni

vers

ity o

f T

echn

olog

y] a

t 19:

38 2

8 M

ay 2

013

100 K. Gwinner et al.

INTRODUCTION

The recovery concept in mental health has progressed from a primaryinterest in the “reduction or removal of clinical symptoms, resolution ofdisruptive anxieties and tensions, and neutralization of intrapsychic con-flicts” (Greenblatt, 1957, p. 836), to embrace broader social concepts. Thesebroader social concepts have emerged from narratives by people with livedexperience of a mental illness. As such recovery is described as individ-ual methods of living a satisfying, hopeful and contributing life, even withthe limitations caused by the illness (Anthony, 1993) and looks for con-nectedness and participation with social networks to recover quality of life(Glover, 2005). These concepts are linked to social and economic deter-minants of mental health, individual and collective empowerment, humanrights concerns, and mental health promotion (Chapman, 2010). These criti-cal aspects have informed psycho-social and person-centered approaches forsocial workers and health professionals in psychiatric care (Coppock, Dunn,& Dunn, 2010) and form the foundation of practice standards approved bythe Australian Association of Social Workers (AASW, 2008). Within these ide-als there is an inherent understanding that people do recover from mentalillness. Yet, how people recover is highly contextualized amid individualizedvalues held by people with a mental illness and the mental health servicedelivery system, each of which may and do conflict with the other. Attemptshave been made to establish a consistent definition of recovery (Lloyd,Waghorn, & Williams, 2008); however, a biomedical understanding of recov-ery from illness as an external influence or functional impairment able to beremoved or repaired continues to be the enduring model and ideal, even inbroader social concepts. Carpenter (2002) claimed the reason for a sustainedbiomedical definition of recovery is limited knowledge of the complexity ofindividualized experiences. Therefore, understanding of individualized val-ues that emphasize the multifarious nature of being ill and being well beyondconventions that confine the context of mental health is crucial.

BACKGROUND

Evolution of the Idea of Recovery

Recovery from mental illness as an overarching philosophy was initiated bythe “user movement” (Cohen, 1998) and embraced by health workers andpoliticians as a psycho-social approach for policy, health care services, andcommunity initiatives (Amering & Schmolke, 2009). Over 60% of the pub-lished material exploring recovery has emerged in the past decade (Stickley& Wright, 2011a). Among the published material, personal accounts of recov-ery by people with lived experience of mental illness is a strong feature.These accounts have been a focus of reviews in recent literature (Onken,

Dow

nloa

ded

by [

Que

ensl

and

Uni

vers

ity o

f T

echn

olog

y] a

t 19:

38 2

8 M

ay 2

013

Making Sense of Mental Illness 101

Craig, Ridgway, Ralph, & Cook, 2007; Stickley & Wright, 2011a), which haverecognized a multitude of individualized dimensions attributed to recoveryby people with a lived experience mental illness. Ralph, Lambert and Kidder(2002) synthesized personal accounts of recovery into the following fourdimensions: internal factors, self-managed care, external factors, and empow-erment. More recently, Stickley and Wright (2011b) defined five themes fromtheir review of the grey/non–peer reviewed literature including; hope andoptimism, meaning to life, activities promoting recovery, definitions and dis-course, and implications for mental health practice. While these are valuabledimensions in practice they can be difficult to clarify or provide tangibleand visible measures for recovery-oriented services, programs, and prac-tice guidelines (Amering & Schmolke, 2009). Moreover, recovery here isnot a fixed, universal outcome; instead it is a lived set of aspirations andexperiences.

A Consensual Model of Recovery for Practice

As in other countries, recent Australian national and state developments inmental health care have aimed at defining recovery and translating person-centered understandings into mental health services (Commonwealth ofAustralia [COA], 2010; COA, 2008; Queensland Government, 2005). Yet dis-parate views and a need to meet service delivery outcomes such as therequisite duration of recovery, remaining symptoms, and normal functioninghave fueled debate to determine a consensual model of recovery in practiceand research (Amering & Schmolke, 2009; Anthony, Rogers, & Farkas, 2003;Bellack, 2006; Ramon, Healy, & Renouf, 2007; Stickley & Wright, 2011a).

To delineate evidence of recovery from mental illness, research has gen-erally focused on outcome models for interventions and practices in order todefine the “endpoint or level of functioning that one achieves and maintainsfor some period of time” (Bellack, 2006 p. 433). Standards of recovery aregenerally framed and delivered by health professionals rather than directedby the goals and processes outlined by people with a lived experience ofmental illness themselves (Ramon et al., 2007).

Treatment, Outcomes, and the Legitimacy of Illness, Recovery,and Human Experience

Various research and peer-reviewed literature of mental health recoverydescribes prioritizing clinical interventions (Heller, Gemmell, & Patterson,2006), improving patient compliance (Gray, Wykes, & Gournay, 2002),and establishing evidence-based interventions such as assertive communitytreatment programs (Porteous & Waghorn, 2009; Stanhope & Solomon, 2008;Drake et al., 2001). Prioritizing these ideological positions for evidence-based recovery maintains distinct conventions that confine the context and

Dow

nloa

ded

by [

Que

ensl

and

Uni

vers

ity o

f T

echn

olog

y] a

t 19:

38 2

8 M

ay 2

013

102 K. Gwinner et al.

consequence of mental health problems as a biomedical disease. As suchrecovery is emphasized as treatment response, illness course, and bypredictors of recovery outcomes (Tohen et al., 2009; Tohen, Hennen, Zarate,& Baldessarini, 2000; Waghorn, Chant, & Whiteford, 2003). The sentimentof people with lived experience of mental illness is that the dynamic andcomplex perceptions of life experiences are diluted and controlled in orderto validate medicalization of recovery in the measurement of outcomes andevidence of treatments (O’Hagan, 2008; Happell, 2008; Roberts & Wolfson,2004).

People with a lived experience of mental illness have strongly arguedthat the requirements expressed as important for individuals with a men-tal illness are lost in dominant perspectives held by health experts (Adame,2006; Glover, 2005; Tooth, Kalyanasundaram, Glover, & Momenzadah, 2003).O’Hagan (2008) emphasized an unhelpful viewpoint that drives mentalhealth services is a fundamental belief that mental illness has no legitimacyas a full human experience. In the pursuit of evidence-based medicine andmeasurable outcomes the complexity associated with human experiencesand the reality of living with the dynamic processes of chronic mental illnesscan be compartmentalized or overlooked (Deegan & Drake, 2006).

Other Meanings of Illness and Recovery

There is a very real need to build evidence of recovery, more in line with thelegitimacy of mental illness as a full human experience. An important focusfor this is the way individuals make sense, manage, and negotiate conflictingideas of identity and experiences of illness in the context of day to day livingin the community. While some studies have explored illness identity in thedevelopment of recovery, these have focused more on conceptual frame-works developed to understand physical illness (Kinderman, Setzu, Lobban,& Salmon, 2006). Such studies include interpretations from people while inhospital environments (Greenfeld, Strauss, Bowers, & Mandelkern, 1989);analysis of previous studies to describe the impact of the term “illness iden-tity” for recovery (Yanos, Roe, & Lysaker, 2010); and published personalaccounts of managing identity following the onset of acute episodes of illness(Wisdom, Bruce, Saedi, Weis, & Green, 2008; Yanos et al., 2010).

While these are all very important to understanding recovery followingan acute episode, the more pressing question of how people living withmental illness as a life-long experience negotiate the meaning of “recovery”is largely avoided and indeed remains problematic for many (Rickwood,2004). Recovery as a concept walks a fine line between promoting anexpanded sense of wellness outside of a biomedical rendition, yet at thesame time in conceiving of a space beyond illness, can ignore the livedreality of chronic mental illness (O’Brien & Fullagar, 2008). This tensionspeaks to the challenge of resisting the medicalization of life, but also to

Dow

nloa

ded

by [

Que

ensl

and

Uni

vers

ity o

f T

echn

olog

y] a

t 19:

38 2

8 M

ay 2

013

Making Sense of Mental Illness 103

avoiding a romanticized vision of a “recovered” life free from mental illness.For the artists in this study there is an additional layer of complexity andpoignancy here, since the creative expression of the experience of mentalillness offers both the opportunity for insight and expression of mental ill-ness as an important aspect of their personhood, but also the potential tofeed a stereotypic perception of art produced by people with mental illness.Thus they negotiated a complex terrain of resisting mental illness as a sum ofwho they are while also embracing and exploring the depth of experience asa certain essential characteristic of their identity in multifarious experiencesof illness, wellness, and in-between.

How these artists make their own meanings, make sense, manage, andnegotiate conflicting ideas of identity and experiences of illness and recoveryin the context of day to day living in the community may help to inform morecomprehensive recovery practice in health and social paradigms.

METHOD

Aim

Using a qualitative approach, the study reported here shares the complexitiesof illness and recovery as a full human experience derived through a col-laborative process aimed at improving and understanding the lives of eachperson living in the community (McIntyre, 2008).

Design

A 12-month qualitative investigation was conducted using ParticipatoryAction Research (PAR) methodologies. Recent research in health care hassuccessfully adopted PAR methodologies with successful outcomes for qual-ity of life, “knowledge transfer” and understanding health issues in a holisticapproach (Bergin, Wells, & Owen, 2008; Gould, 2006; Israel, Eng, Schulz,& Parker, 2005; Lammers & Happell, 2004). PAR is a disciplined inquirythat seeks to produce practical knowledge, involving the people concernedsimultaneously in the questioning, action, and knowledge construction, togain clarity about the issues under investigation (Koch, Selim, & Kralik, 2002).PAR differs from other social and health research, by providing a focus oneffecting change for the participants, the researchers, and in broader socialconfigurations (Breitbart, 2010; Minkler & Wallerstein, 2003). Thus, mean-ing for the eight artists in the research was negotiated and questioned in atwo-way conversation and as a key part of a transformative developmen-tal process. Symbolic Interactionism served as the theoretical frameworkthrough the cyclical processes inherent in PAR to focus on the subjectiveaspects of social life around meaning, language, and thought. The incorpo-ration of ideas from symbolic interaction (Stryker, 2001) provided a coherent

Dow

nloa

ded

by [

Que

ensl

and

Uni

vers

ity o

f T

echn

olog

y] a

t 19:

38 2

8 M

ay 2

013

104 K. Gwinner et al.

framework to examine identity development and the complexity of identitynegotiation in the community context.

PAR significantly enabled insight into the underpinning issues, effects,and outcomes and thus, the complexity of conditions entangled in theexperience of living with a mental illness. The approach and the natureof participation, for the study, were negotiated around developing artworkand curating an exhibition entitled “Artist Citizen.” This context provided aspace for each of the eight artist’s voices to be ever present in the data asco-researchers.

The People

The Human Research Ethics Committee granted ethical clearance to theproject in November of 2007. Mental Illness Fellowship Queensland (MIFQ),as the gatekeeper, sent an invitation to participate in the research to peo-ple who had exhibited in the annual art exhibition hosted by MIFQ. Eightadults, all of whom identify as artists, agreed to take part in the research.Individual informed consent was obtained at the start of the project, butalso understood as a continuing process over the yearlong project. Each per-son had been diagnosed with a mental illness, lived independently in thecommunity, and had experiences of mental health services.

As artists, each person expressed a keen desire for their views and theirartwork being acknowledged and identified as part of this research. Theyexpressed the right and opportunity to engage in a continual interpretiverelationship and ownership over their own data. This is consistent with beingconsidered collaborative researchers and professional artists, and not just“subjects” of a research. Amendment to ethics approval was sought andgranted to enable identification of the artists in all aspects of the researchand dissemination. Thus identification of the artists has been openly sharedin this article.

The artists who agreed to participate were Richelle Spence, Andy Coote,Paul Munro, Kathy Oliver, Eliza Leahy, Wayne Howie, Travis Mitchell, andGlenn Brady. Each person is identified by their first name in the rest of thisarticle, which reflects the social relationships that were established duringthe research.

The observable and sustained commitment of the artists to the outcomeof a public exhibition entitled Artist Citizen and the research was evidenceof the importance, for the artists, of generating alternative ways of engagingparticipation and in understanding the particular issues of people with amental illness in community contexts.

Data Collection and Analysis

Data collection was done as part of the development of the exhibition. Forthis article the data is drawn from visual diaries, three in-depth interviews

Dow

nloa

ded

by [

Que

ensl

and

Uni

vers

ity o

f T

echn

olog

y] a

t 19:

38 2

8 M

ay 2

013

Making Sense of Mental Illness 105

with each of the eight artists, observation notes of the planning andexhibiting processes, the artists’ sketches/designs, and finished artwork. Theresearch began with an in-depth interview, using an open approach toquestioning such as: Would you like to start by telling your personal storyas an artist with a mental illness? This enabled the artist to lead the conver-sation and prompt issues that they themselves felt were important. A numberof questions aimed to initiate exploration of each person’s insight to illnessand recovery such as: What would you describe as the most important ele-ments in your recovery from mental illness? The responses prompted criticalawareness of contradictions in current health rhetoric and the knowledgeand understanding of recovery held by the researcher.

A second interview was held in each artist’s studio, videotaped andedited to be displayed as a video installation in the exhibition. This wasunplanned but significant in capturing another level of individual andimportantly the shared experiences each artist had with the other artists.Incorporating each artist’s narrative in the exhibition through the video instal-lation assisted the artists and the researchers to assess how they interacted asa community and how they actively defined themselves in the community.A third interview following the exhibition signalled the end of participation inthe research by the artists. The final interview revealed how the artists grewand provided reflection on their actions during the research and preparationof the exhibition.

Throughout the research, each artist maintained individual methods andinquiry, which, at times, frustrated aspects of the collaborative participatoryprocess, and required rethinking participatory and collective processesinherent in PAR methodologies. The following methods describe how theartists influenced and undertook interpretation, comparison, coding, anddevelopment of the concepts in their own way, through their artistic inquiry.

A critical element of the data collection and analysis process was theunderstanding that knowledge emerges from within the process of art prac-tice; the creative process contributed to opening up new thinking and per-spectives, most importantly in a way that made sense to the artists. Throughthe artwork, the visual diaries and the second in-depth interview, the artistsengaged in reflection and interpretation of the data and took control of theknowledge that was produced. Exhibiting the artwork, sharing some pages ofthe artist’s and researcher’s diaries and watching and listening to the videoof the interviews of each other in their studios provided opportunities toobserve each person’s way of making sense of phenomena and provided acritical point for connecting shared social dialogues. These methods gen-erally strengthened each person’s influence to speak to and about theirindividual positions. Significantly these methods provided the intersectionof data collection and analysis strategies simultaneously (Kemmis, 2008).

The language and meaning that emerged from these methodologiesvalued the expertise, and individual needs of the eight artists in definingknowledge about their own experiences. The exhibition provided space to

Dow

nloa

ded

by [

Que

ensl

and

Uni

vers

ity o

f T

echn

olog

y] a

t 19:

38 2

8 M

ay 2

013

106 K. Gwinner et al.

present, value, and enrich the variant concepts held by each person, to shareoverlapping perceptions and interpretations and offered provision for rigorand verification of codes and themes. The first author held the responsibilityto trace the individual positions and experiences emergent in the data and todescribe the overall connections and relationship of the themes. The writingwas then shared with each artist and acknowledged as both the product ofthe researchers and the artists as co-researchers.

RESULTS

Four main categories encapsulated developments and shifts around theartist’s and the researcher’s understandings. These evolved from an initialunderstanding of being a person with a mental illness as an artist, to a finaljuncture that illustrated a standpoint to be acknowledged and valued for hisor her identity as the artist regardless of mental illness. The artists manip-ulated the meaning of illness for control of social constructions and thuslegitimization of their choices and human experiences. The following sixthemes reflect their individualized values and meaning of illness and recov-ery: To know who me is; I can’t separate it; Recovery; Systems; A bit morebetter; and Layered identities.

To Know Who Me Is

Among some of the early dialogues of the artist’s own experiences werethe interpretations, comparisons, and complex realities of the identity asa patient. Explorations and knowledge of a unique self was consequently astrong underlying theme illustrated in the visual diaries, discussed in-depth ininterviews and developed into final artworks displayed at the exhibition. Thetheme “To know who me is” articulated a desire to move away from beinglabelled through the process of diagnosis. There was a continual challengeexperienced by the eight artists to retrieve an understanding of self from thatof being “the patient.”

To discover a unique self-identity or to “know who me is” beyond pre-determination of mental illness, was described by Kathy as not available toher as the patient or in the clinician–patient relationship. She indicated theanxiety caused by struggling to be herself when she said, “I am trying to bemyself. I have lived so long with the pressure of not being allowed to beme. I have been very controlled it’s hard to be me. It’s very hard to knowwho me is.”

Dialogue and inquiry with the artists highlighted distinctions inherentin various constructions of the artist identity emergent from their patientidentity. Labels such as Outsider Artist; Raw, Visionary, or Naïve Artist; andCrazy Artist became distinct identities for the artist with a mental illness.

Dow

nloa

ded

by [

Que

ensl

and

Uni

vers

ity o

f T

echn

olog

y] a

t 19:

38 2

8 M

ay 2

013

Making Sense of Mental Illness 107

Travis explained, in frustration, that his attitude to this characterization of hisart and “who he is” was to regard it as an extension of the labeling processhe experienced being a mental health patient. He said, “Another freakinglabel. Sorry. I thought great another one.”

Inquiry through their artwork facilitated opportunity for each personto experiment with ideas; to engage social meanings and interpretations;communicate feelings and share values attributed to and imposed on theexperiences of an artist with a mental illness. Significantly, each personemphasized being an artist as an essential way of life. Travis stated, “Wellfirst and foremost I think that I am actually an artist before I am a person.”

Wayne simply put it, “Life is art.”To be the artist expanded social meaning and provided a sense of

accomplishment and self-respect that shifted unhelpful conventions of men-tal health. In effect, being an artist encompassed full human experience andlegitimacy of their way of life in the community. The artist identity enabledother aspects of who they were in a way that being a patient could not.As Kathy stated, “Inside I feel—this is me doing art—sharing depth andstruggle I am an artist but I have a lot of other things going on.”

I Can’t Separate It

A theme to emerge in the PAR process was that mental illness was not exter-nal to the individual’s understanding of self, nor, something that could beremoved of reduced from their experiences. The artist Richelle, spoke abouther choice not to disclose her illness as an aspect of who she was andher experiences as an artist. At the beginning of the research she believednondisclosure was important to escape imposed representations of mental ill-ness and to avoid being called “the crazy artist.” During the research, Richellechallenged her choice through the development of a performance exploringthe theme of being labelled and controlled. She engaged the audience into arelationship of shared experience by placing labels around members of theaudience’s necks. This work provided a transformative experience in whichRichelle expressed a deeper comprehension of her meaning of self and ques-tioned the social construction of mental illness and why she had felt theneed to hide her illness experiences. Rather than separating her experienceof mental illness from her identity, Richelle chose to challenge the stigma.She distinguished new understanding of mental illness for herself, simply asan experience of being human. She wrote,

The actual fact of that is, that I have been given this label and I don’tactually assign to it at all. I am just trying to show you that I am a humanbeing. I might be happy most of the time but sometimes when I am not.I go right down and I just need to stay there for a couple of days. Causeapparently being happy all the time and then being sad and really sad is

Dow

nloa

ded

by [

Que

ensl

and

Uni

vers

ity o

f T

echn

olog

y] a

t 19:

38 2

8 M

ay 2

013

108 K. Gwinner et al.

not allowable in this society. And that is, what is, what really, really pissesme off. Ok yeap we will put a label on you cause you are not this, at thismonotone level . . . and I wouldn’t want to be at a monotone level, a verybeige life. . . . By directly sharing my illness as a subject . . . my politicalintent is to develop a dialogue around stigma. The bigger picture is tocreate a ripple effect to instruct change within the institutions and educatepeople about the system, paradigm and its harmfulness to others . . .

Each artist’s experiences of mental illness had shaped his or her way of per-ceiving the world and in various ways they each described the value of thisas a core aspect of who they were. When preparing for the video interviewone of the artists, Paul explained that his mental illness was inseparable frompersonhood.

Paul summed up his experience succinctly when he said, “Yeah I defi-nitely see myself as an illness. I just can’t separate it. It would be like tryingto take flour out of water . . .”

Paul spoke about a dual position of mental illness as an influence onhis experiences and being the artist observing the illness as an experience ofbeing human. In a sketch in his visual diary (Figure 1), he traced a relation-ship between his inquiry as the artist and his implicit experiences of illness.Two faces represent something like two “vessels” that contain the boundariesof who he was. He aimed to observe and on some level acknowledge hisunderstanding of himself as a person with a mental illness while controlling

FIGURE 1 Paul diary entry February 15, 2009 (color figure available online).

Dow

nloa

ded

by [

Que

ensl

and

Uni

vers

ity o

f T

echn

olog

y] a

t 19:

38 2

8 M

ay 2

013

Making Sense of Mental Illness 109

insight of this experience as the artist. Further, he understood this dual posi-tion as a method to, thus, cope and manage his illness, rather than “recover”wellness. He said,

I label myself as my illness because it happens in my head space . . .

it effects my perception and the way I encode information . . . events.My interior space is mine, I can’t let go of this place, I made it, I con-structed it. . . . I mean I’d like to get a little bit more better, and maybeif I focus on what the illness is a bit, and try to describe it in pictorialterms, (this) might give me more insights. I might find some better waysto cope with it.

Recovery

The theme of “recovery” encapsulated a focus of the research to investigatethe experiences of recovery living in the community. Contradictions emergedin the knowledge derived from the experiential and practical understandingsof the artist’s lived experience and the complex interplay of institutional andacademic perspectives, expectations, and language of recovery reviewed bythe researchers.

Throughout the research each person conveyed tensions between theideal and the rhetoric of recovery and the practical demands for living in thecommunity with experience of mental illness. The use of the word, recov-ery was not a good fit with the people in this research. The meanings eachperson attributed to wellness and illness were adjusted in everyday personalexperiences and negotiations with others. Recovery was not seen as a pro-cess or journey happening in their lives as a result of mental illness. Travis’sstatement summarized how the artists defined mental illness and recovery,as something occurring, “. . . in the moment and it can change from time totime, during time.”

Each person perceived and described his or her own perception ofrecovery in very different ways and, often, rejecting the actual word recovery.The term recovery was perceived in the most part to belong to the clinicaldiscourse of mental illness and weighted with expectations for illness to beremoved or completely repaired. A key notion held by the artists of thisdiscourse was described as “systems.”

Systems

The fourth theme, “systems” was characterized by descriptions in relation toclinical interventions, normality, and functioning in order to meet conven-tions prescribed in mental health. Andy expressed being uncomfortable andwas irritable with the language of recovery. He said, “Recovered? It’s such aclinical term.”

Dow

nloa

ded

by [

Que

ensl

and

Uni

vers

ity o

f T

echn

olog

y] a

t 19:

38 2

8 M

ay 2

013

110 K. Gwinner et al.

Recovery as a clinical term was expressed as engaging in a functionalsystem of normality based on the values of health professionals and socialcultural attitudes that position the person with a mental illness as “strange.”

Paul drew attention to the approach in mental health service’s under-standing of recovery that fails to consider the individual’s values and pro-cesses. He discerned an expectation for “recovery” that required giving uphis illness. He claimed he did not want to give up his illness. He explained,

So Recovery is hard because Diagnosed have to conform to your systemand your values as the other or sane person. We are the perpetual otherand my life is more interior. I live in my own mind so there are manyconstructs. I function in your system, but live in my worlds. It’s not alwaysbad. . . . So what you call my illness . . . is real to me. Your system, tome, is madness. My construct is beautiful. I don’t want to give it up. I’mglad to be mad.

A Bit More Better

The fifth theme of “A bit more better” describes how the artists made sense ofmental illness and recovery as an ongoing aspect in their life. Paul describedthis in the phrase to “live a bit more better.”

To get “a bit more better,” the artists indicated it is necessary “to dealwith” lived experiences of mental illness on their own terms and to pre-serve understanding and aspects of their illness as part of their humanity.Rather than a shared language of recovery around ideas such as hope, opti-mism, and empowerment, a “bit more better” presented freedom to access abroader position that did not require conforming to a convention dictated byothers or “giving up their own construct.” Glenn’s description, of rebuildinghis way of life to manage the problems of his illness and participate in socialsituations, demonstrated a great struggle and effort, rather, than an empow-ered position of recovery. He said, “Everything changes! Its like, you know. . . the way you walk to the shops . . . becomes like a night mare. Leavingthe house can be, you know . . . a death defying act. You end up buildingaround that.”

The notion to live “a bit more better” detailed strategies of managingillness and meaning of self through art as a way to understand the subcon-scious and thus working toward making sense of mental illness in their dailylife. Richelle developed her own theory about art as a way to expose anddeal with layered meanings of self. She indicated,

With your mental illness everything is . . . well it is a theory of mine. . . it’s your subconscious bubbling through and things that you haven’tdealt with that is in your subconscious and I think art is a very powerfulmedium. . . . Umm it has a way of coming out when you are doing art.Therefore you are dealing with your subconscious. That then in turnhelps your recovery.

Dow

nloa

ded

by [

Que

ensl

and

Uni

vers

ity o

f T

echn

olog

y] a

t 19:

38 2

8 M

ay 2

013

Making Sense of Mental Illness 111

The theme “a bit more better” was adopted to describe the importanceof dealing with illness as an ongoing aspect of their life both, good andbad, rather, than reaching a romanticized notion of recovery. It indicated theimportance of their authority to preserve his or her, own understanding ofillness and strategies of managing illness.

Layered Identity

The theme “Layered identity” was drawn from artwork that characterizedessential aspects of their identity and the ways they tried to make sense ofand understand the significance of their personal experiences. Both Kathyand Eliza revealed aspects of their layered identities in portraits, which theyshared as part of the exhibition Artist Citizen.

The assertion of the artist identity in her painting entitled DiagnosedArtist (Figure 2), through inclusion of the paint palette, insisted the vieweradopt Kathy’s personal ideal of her identity. Kathy reinforced her owncontrol. She concentrated the audience’s observation on her artist identity,over the diagnosed configuration that had dominated her way of life as thepatient. The title of the painting, Diagnosed Artist, referenced earlier groupdiscussions of the patient identity. Through this reference, Kathy challengesthe viewer to question a diagnosed construction and the criteria used todefine behavior as mental illness. Kathy reinforced her authority to establish

FIGURE 2 Kathy Oliver, Diagnosed Artist (color figure available online).

Dow

nloa

ded

by [

Que

ensl

and

Uni

vers

ity o

f T

echn

olog

y] a

t 19:

38 2

8 M

ay 2

013

112 K. Gwinner et al.

FIGURE 3 Eliza Leahy, The Mask I Wear (color figure available online).

her own legitimacies in her experiences of both mental illness and as anartist.

Eliza also made reference to personal layers of self and to her livedexperiences by representation of herself as the mask, in the work entitledThe Mask I Wear (Figure 3). Her eyes have a power as they focus on seeingthe world and seeing the self in the mirror, yet the mouth is detached by theedge of the mask thus, submits to a silence. The image challenges the viewerto see Eliza’s command as the artist and to question the silence around herpersonal experience of isolation.

Mental illness was described as intricately internal to an understandingof who they were. As such it encompassed multifaceted layers of understand-ing and meaning of illness, wellness, and in-between. These multifacetedlayers held tensions, which were not necessarily resolved or overcome.Claiming an identity as an artist first and foremost did not provide a spacefree from the experience, or the label, of mental illness. Rather, in acceptingthe fundamental experiences of mental illness as a as an important aspectof their personhood they commanded a way to explore and negotiate thecomplex terrain of illness and recovery.

DISCUSSION

The findings described in this article warrant development of broader frame-works for thinking about and responding to the dynamic and complexnegotiations of identity and for making sense of mental illness as a full

Dow

nloa

ded

by [

Que

ensl

and

Uni

vers

ity o

f T

echn

olog

y] a

t 19:

38 2

8 M

ay 2

013

Making Sense of Mental Illness 113

human experience. The eight artists in this research expressed trepidationto ideals of a romanticized recovery, referring to recovery as “a clinicalterm” necessitating measures to function within a system of normality thatdiminished or excluded their experiences.

The artists in this research perceived giving up illness as a require-ment for recovery. Giving up illness also translated as giving up personalparadigms used to construct their meaning of self and identity. A health–disease model and/or a clinical perspective in which professionals autho-rized the individual’s capacity for recovery drove this understanding ofrecovery. The artists reiterated the view they “don’t want to give it up.”Requirement to meet functional systems of normality based on the valuesof health professionals are potentially problematic from the perspective ofrespecting independence and promoting the ideas, insights, and knowledgeof people with lived experience of a mental illness. Giving up illness impliedto the artists, giving up an essential aspect of who they are and their fullhuman experience. This finding further extends on evidence, from qualita-tive research, that conceptual frameworks of mental illness as external to theindividual are inappropriate or inadequate in understanding the experiencesof the person with a mental illness (Kinderman et al., 2006).

In contrast to findings from a review of published personal accounts ofpeople with a mental illness (Wisdom et al., 2008), these artists illustratedmultiple layers of their identity of which illness was an important and insep-arable element, rather than separate to a core sense of self. Yanos et al.’s(2010, p. 75) hypothesis that illness identity may play a major role in thecourse of mental illness affecting outcomes related to recovery was sup-ported, but not as an impoverished sense of self. “A bit more better” incor-porated inherent experience, and pronounced many constructs of illness andwellness beyond the biomedical constructs of functional/syndromal recov-ery (Tohen et al., 2000). Other research is emerging in the discipline of “artand mental health” that extends an idea of the experiences of health, illness,and wellbeing as integral aspects of the person’s identity (Spandler, Secker,Kent, Hacking, & Shenton, 2007; Gwinner, Knox, & Hacking, 2009; Stacey &Stickley 2010). For the eight artists in the study, the language of recovery helda black and white view of their illness with implication of a clinical significantimpairment that needed to be removed. Notions of being better, linked tothe understanding each person held of his or her identity. This concept sup-ported individual strategies to cope and manage illness experiences throughthe activity of art and layered identities. It also demonstrated outcomesrelated to some ideologies of recovery emergent in the “user movement”(Cohen, 1998) such as control and legitimacy of their experiences.

This significantly emphasizes that mental illness and recovery, for theperson with a mental illness, cannot suitably be defined into consen-sual models for evidence-based practice. To assume consensual models ofrecovery fails to acknowledge that being ill and being well, for the person

Dow

nloa

ded

by [

Que

ensl

and

Uni

vers

ity o

f T

echn

olog

y] a

t 19:

38 2

8 M

ay 2

013

114 K. Gwinner et al.

with a mental illness, means different things to different people and at dif-ferent points in their life. Attention to these differentiated layers of humanexperience is essential to make sense of mental illness in health and socialparadigms.

The eight artists in this research have made a sincere claim as humans totheir own concepts of who they are. Their sense of personhood is inclusiveof their mental illness but not in an imposed medicalized or categorical way,but in a negotiated, lived context. This insight of their identity embraces ill-ness as a significant aspect of their identity, however not as all that they areand, at the same time expresses that they did not want their illness experi-ences to be positioned only as an obstruction to their life or their ability tofunction. It is critical to consider this capacity by developing broader frame-works for thinking and responding to the dynamic and complex processes ofmental illness and recovery. Functional systems of normality constrain ques-tions being asked and, thus, limit critical processes to build health care that isrelevant in personal perspectives of the person with the illness. Social work-ers are in a unique position to critically expand frameworks of mental illnessand recovery as the largest group of practitioners in and across the mentalhealth field (Starnino, 2009). It is imperative that further research builds onthe perspectives held by people with lived experiences of a mental illnessliving in the community.

These artists have illustrated that rather, than polar opposites, being illand being well are maneuvered in tradeoffs, subtleties, and variability ofbehavior and attitudes transformed in the self and negotiated with others.Making sense of mental illness as a full human experience allows a space tobegin to incorporate the more difficult and challenging ideological positionsbetween individuals with lived experience of a mental illness and the mentalhealth service delivery system. Until this gap is attended to, understandingof recovery will remain a neat biomedical outcome from an impoverishedsense of self.

REFERENCES

Adame, A.L. (2006). Recovered voices, Recovered lives: A narrative analysis ofpsychiatric survivors’ experiences of recovery. Master of Arts, Faculty ofMiami University Miami. Retrieved from http://www.freedom-center.org/pdf/AlexAdameThesisRecoveredVoices.pdf

Amering, M., & Schmolke, M. (2009). Recovery in mental health: Reshaping scientificand clinical responsibilities (1st ed.). Chichester, UK: John Wiley & Sons.

Anthony, W.A. (1993). Recovery from mental illness: The guiding vision of the mentalhealth service system in the 1990s. Psychosocial Rehabilitation Journal, 16 ,11–24.

Anthony, W., Rogers, E.S., & Farkas, M. (2003). Research on evidence-based prac-tices: Future directions in an era of recovery. Community Mental Health Journal,39(2), 101–114. doi: 10.1023/a:1022601619482

Dow

nloa

ded

by [

Que

ensl

and

Uni

vers

ity o

f T

echn

olog

y] a

t 19:

38 2

8 M

ay 2

013

Making Sense of Mental Illness 115

Australian Association of Social Workers. (2008). Practice standards for mental healthsocial workers. Canberra, Australia: AASW.

Bellack, A.S. (2006). Scientific and consumer models of recovery in schizophre-nia: Concordance, contrasts, and implications. Schizophrenia Bulletin, 32(3),432–442. doi: 10.1093/schbul/sbj044

Bergin, M., Wells, J.S.G., & Owen, S. (2008). Critical realism: A philosophical frame-work for the study of gender and mental health. Nursing Philosophy, 9(3),169–179.

Breitbart, M. (2010). Participatory research methods. In N. Clifford, S. French, &G. Valentine (Eds.), Key methods in geography (2nd ed.). London, UK: SagePublications Ltd.

Carpenter, J. (2002). Mental health recovery paradigm: Implications for social work.Health & Social Work, 27(2), 86–94.

Chapman, A.R. (2010). The social determinants of health, health equity, and humanrights. Health and Human Rights: An International Journal, 12(2). Retrievedfrom http://www.hhrjournal.org/index.php/hhr/article/view/366/560

Cohen, M. (1998). Users’ movement and the challenge to psychiatrists. PsychiatricBulletin, 22(3), 155–157. doi: 10.1192/pb.22.3.155

Commonwealth of Australia. (2008). National Mental Health Policy. Retievedfrom http://www.health.gov.au/internet/main/publishing.nsf/content/BF4CF02AE1033BF1CA25722200119A23/$File/Policy.pdf

Commonwealth of Australia. (2010). National standards for mental health ser-vices. Retrieved from http://www.health.gov.au/internet/main/publishing.nsf/content/DA71C0838BA6411BCA2577A0001AAC32/$File/servstl0v2.pdf

Coppock, V., Dunn, B., & Dunn, R. (2010). Understanding social work practice inmental health. London, UK: Sage.

Deegan, P.E., & Drake, R.E. (2006). Shared decision making and medication man-agement in the recovery process. Psychiatric Services, 57(11), 1636–1639. doi:10.1176/appi.ps.57.11.1636

Drake, R.E., Goldman, H.H., Leff, H.S., Lehman, A.F., Dixon, L., & Mueser, K.T.(2001). Implementing evidence-based practices in routine mental health servicesettings. Psychiatric Services, 52(2), 179–182.

Glover, H. (2005). Guest editorial: Recovery based service delivery: Are we readyto transform the words into a paradigm shift? Advances in Mental Health, 4(3),179–182.

Gould, N. (2006). An inclusive approach to knowledge for mental health social workpractice and policy. British Journal of Social Work, 36(1), 109–125.

Gray, R., Wykes, T., & Gournay, K. (2002). From compliance to concordance: Areview of the literature on interventions to enhance compliance with antipsy-chotic medication. Journal of Psychiatric and Mental Health Nursing, 9(3),277–284. doi: 10.1046/j.1365-2850.2002.00474.x

Greenblatt, M. (1957). Recovery from mental illness. Public Health Reports, 72(9),836–839.

Greenfeld, D., Strauss, J.S., Bowers, M.B., & Mandelkern, M. (1989). Insight and inter-pretation of illness in recovery from psychosis. Schizophrenia Bulletin, 15(2),245–252. doi: 10.1093/schbul/15.2.245

Gwinner, K., Knox, M., & Hacking, S. (2009). The place for a contemporary artistwith a mental illness. Journal of Public Mental Health, 8(4), 29–37.

Dow

nloa

ded

by [

Que

ensl

and

Uni

vers

ity o

f T

echn

olog

y] a

t 19:

38 2

8 M

ay 2

013

116 K. Gwinner et al.

Happell, B. (2008). Determining the effectiveness of mental health services froma consumer perspective: Part 1: Enhancing recovery. International Journal ofMental Health Nursing, 17(2), 116–122.

Heller, R., Gemmell, I., & Patterson, L. (2006). Helping to prioritise interventionsfor depression and schizophrenia: Use of Population Impact Measures. ClinicalPractice and Epidemiology in Mental Health, 2(1), 3. doi: 10.1186/1745-0179-2-3

Israel, B., Eng, E., Schulz, A., & Parker, E. (2005). Methods in community-basedparticipatory research for health. San Francisco, CA: Josey-Bass.

Kemmis, S. (2008). Critical theory and participatory action research. Action research:Participative inquiry and research in H. Badbury & P. Reason (Eds.), The sagehandbook of action research (pp. 121–138). London, UK: Sage.

Kinderman, P., Setzu, E., Lobban, F., & Salmon, P. (2006). Illness beliefs inschizophrenia. Social Science & Medicine, 63(7), 1900–1911. doi: 10.1016/j.socscimed.2006.04.022

Koch, T., Selim, P.A.M., & Kralik, D. (2002). Enhancing lives through the develop-ment of a community-based participatory action research programme. Journalof Clinical Nursing, 11(1), 109–117.

Lammers, J., & Happell, B. (2004). Research involving mental health consumersand carers: a reference group approach. International Journal of Mental HealthNursing, 13(4), 262–266.

Lloyd, C., Waghorn, G., & Williams, P.L. (2008). (Report). British Journal ofOccupational Therapy, 71(8), 321–328.

McIntyre, A. (2008). Participatory action research. Thousand Oaks, CA: Sage.Minkler, M., & Wallerstein, N. (2003). Community based participatory research for

health (2nd ed.) San Francisco, CA: Josey-Bass.O’Brien, W., & Fullagar, S.P. (2008). Rethinking the relapse cycle of depres-

sion and recovery: A qualitative investigation of women’s experiences. SocialAlternatives, 27 , 6–14.

O’Hagan, M. (2008, December). Recovery: The true meaning of recovery. MentalHealth Today, 16–17.

Onken, S.J., Craig, C.M., Ridgway, P., Ralph, R.O., & Cook, J.A. (2007). An analysis ofthe definitions and elements of recovery: A review of the literature. PsychiatricRehabilitation Journal, 31(1), 9–22. doi: 10.2975/31.1.2007.9.22

Porteous, N., & Waghorn, G. (2009). Developing evidence-based supported employ-ment services for young adults receiving public mental health services. NewZealand Journal of Occupational Therapy, 56(1), 34–39.

Queensland Government. (2005). Sharing responsibility for recovery. Brisbane,Australia. Retrieved from www.health.qld.gov.au/mentalhealth/docs/Recovery_Paper_2005.pdf

Ralph, R.O., Lambert, D., & Kidder, K.A. (2002). The recovery perspective andevidence-based practice for people with serious mental illness. Retrieved fromhttp://www.bhrm.org/guidelines/ralph%20recovery.pdf

Ramon, S., Healy, B., & Renouf, N. (2007). Recovery from mental illness as anemergent concept and practice in Australia and the UK. International Journalof Social Psychiatry, 53(2), 108–122. doi: 10.1177/0020764006075018

Rickwood, D. (2004). Recovery in Australia: Slowly but surely. Australian e-Journalfor the Advancement of Mental Health, 3(1), 8–10.

Dow

nloa

ded

by [

Que

ensl

and

Uni

vers

ity o

f T

echn

olog

y] a

t 19:

38 2

8 M

ay 2

013

Making Sense of Mental Illness 117

Roberts, G., & Wolfson, P. (2004). The rediscovery of recovery: Open to all. Advancesin Psychiatric Treatment, 10(1), 37–48.

Stacey, G., & Stickley, T. (2010). The meaning of art to people who use mental healthservices. Perspectives in Public Health, 130(2):70–77

Stanhope, V., & Solomon, P. (2008). Getting to the heart of recovery: Methods forstudying recovery and their implications for evidence-based practice. BritishJournal of Social Work, 38(5), 885–899. doi: 10.1093/bjsw/bcl377

Starnino, V.R. (2009). An integral approach to mental health recovery: Implicationsfor social work. Journal of Human Behavior in the Social Environment, 19(7),820–842. doi: 10.1080/10911350902988019

Stickley, T., & Wright, N. (2011a). The British research evidence for recovery, paperspublished between 2006 and 2009 (inclusive). Part one: A review of the peer-reviewed literature using a systematic approach. Journal of Psychiatric andMental Health Nursing, 18(3), 247–256. doi: 10.1111/j.1365-2850.2010.01662.x

Stickley, T., & Wright, N. (2011b). The British research evidence for recovery,papers published between 2006 and 2009 (inclusive). Part two: A review ofthe grey literature including book chapters and policy documents. Journal ofPsychiatric and Mental Health Nursing, 18(4), 297–307. doi: 10.1111/j.1365-2850.2010.01663.x

Stryker, S. (2001). Traditional symbolic interactionism, role theory, and structuralsymbolic interactionism: The road to identity theory. In J. H. Turner (Ed.),Handbook of sociological theory. New York, NY: Springer Science.

Spandler, H., Secker, J., Kent, L., Hacking, S., & Shenton, J. (2007). Catching life: Thecontribution of arts initiatives to recovery approaches in mental health. Journalof Psychiatric and Mental Health Nursing, 14, 791–799.

Tohen, M., Frank, E., Bowden, C.L., Colom, F., Ghaemi, S.N., Yatham, L.N., . . .Vieta, E. (2009).The International Society for Bipolar Disorders (ISBD) TaskForce report on the nomenclature of course and outcome in bipolar disorders.Bipolar Disorders, 11(5), 453–473.

Tohen, M., Hennen, J., Zarate, C.M., & Baldessarini, R.J. (2000). Two-year syndromaland functional recovery in 219 cases of first-episode major affective disorderwith psychotic features. The American Journal of Psychiatry, 157(2), 220–228.

Tooth, B., Kalyanasundaram, V., Glover, H., & Momenzadah, S. (2003). Factorsconsumers identify as important to recovery from schizophrenia. AustralasianPsychiatry, 11, S70–S77. doi: 10.1046/j.1440-1665.11.s1.1.x

Waghorn, G., Chant, D., & Whiteford, H. (2003). The strength of self-reported courseof illness in predicting vocational recovery for persons with schizophrenia.Journal of Vocational Rehabilitation, 18(1), 33–41.

Wisdom, J.P., Bruce, K., Saedi, G.A., Weis, T., & Green, C.A. (2008). “Stealing me frommyself”: Identity and recovery in personal accounts of mental illness. Australian& New Zealand Journal of Psychiatry, 42(6), 489–495.

Yanos, P.T., Roe, D., & Lysaker, P.H. (2010). The impact of illness identity on recov-ery from severe mental illness. American Journal of Psychiatric Rehabilitation,13(2), 73–93. doi: 10.1080/15487761003756860

Dow

nloa

ded

by [

Que

ensl

and

Uni

vers

ity o

f T

echn

olog

y] a

t 19:

38 2

8 M

ay 2

013