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From the voices of experience, the road to recovery Carson, Joanna Patricia 2000

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F R O M T H E V O I C E S O F E X P E R I E N C E , T H E R O A D T O R E C O V E R Y by J O A N N A PATR IC IA C A R S O N B A . , The University of British Co lumb ia , 1972 B.S.W., The University of British Co lumb ia , 1998 A T H E S I S S U B M I T T E D IN P A R T I A L F U L F I L L M E N T O F T H E R E Q U I R E M E N T S O F T H E D E G R E E O F M A S T E R C O F SOCIAL WORK in T H E F A C U L T Y O F G R A D U A T E S T U D I E S (School of Soc ia l Work and Fami ly Studies) W e accept this thes is a s conforming to the required s tandard T H E U N I V E R S I T Y O F BR IT ISH C O L U M B I A Apri l , 2000 © J o a n n a Patr ic ia C a r s o n , 2000 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of The University of British Columbia Vancouver, Canada DE-6 (2/88) Abstract The individualization and medical izat ion of the emot ional distress of those given psychiatr ic d i agnoses deny the soc ia l , political, and e conomi c context in which the present ing behav iours a rose and leads away from mak ing changes to society. S o m e people who are psychiatrically labelled join in groups for solidarity in the face of being st igmat ized. In these groups the m e m b e r s c an resist the d i sempowerment a n d he lp lessness learned in the psychiatr ic sys tem. With co-researchers from a self-help group this study g ives express ion to the usually s i lenced vo ices of psychiatr ized people . Feminist and standpoint theories, co-cultural and living sys tems theories form a f ramework for this narrative study. A structural narrative method is used to ana lyze the stories, found in the transcripts of six individual interviews, told by the co-researchers about their exper iences in psychiatric se rv i ces and in the recovery p rocess . T h e stories reveal how the ideology and pract ices of psychiatry u s e s t igma, oppress ion and the creation of the identity of psychiatr ic patient for control and management . The stories a lso reveal the reality of hope for recovery through the support of peers and from the role mode l s of those w h o have significantly recovered their mental health. Two focus group interviews were conduc ted with member s of the self-help group where suggest ions for programs were deve loped to address i s sues raised within the groups and in the individual interviews. The f indings of the research will be reported to the self-help group w h o will u s e the study to back proposa ls for the funding of recovery-oriented programs. W h e n socia l workers and other mental health professs iona ls recognize the importance of support ing the p rocess of recovery, consumer/survivor-run programs will be acknowledged as effective and integral parts of any mental health sys tem T A B L E OF CONTENTS Abstract ii Tab le of Contents iii Lists of F igures viii Acknow ledgments ix INTRODUCTION 1 W h y this Subject and Fo rm of R e s e a r c h ? 3 H o w is this Resea r ch Re levant to Soc ia l W o r k ? 6 Conc lus ion 8 PART ONE: CONTEXT, THEORY AND METHOD Chapter One The Roots and Practices of Present Day in Psychiatry 10 Sc i ence , the Medica l Mode l and Psychiatry 10 Psychiatry wins control of 'mad ' people 12 C a n humans be repaired like a mach ine ? 13 Scientif ic medic ine and how to 'empty' a patient 14 Medical izat ion: Don't Worry You ' re Just 'Sick' ! 15 The medical izat ion of dev i ance 15 They say they c an tell if you're normal or not 16 Wha teve r your problems, w e have a pill for you 18 The Current Ru le of Biological Psychiatry 19 The home team approach to psychiatr ic control 21 Take this pill and go buy yourself a hat! 23 ' D a m a g e d ' people don't recover! 26 The exploitation of peer support 27 Conc lus ion 28 Chapter Two A Review of the Literature Researching the Voices of Consumer/Survivors 30 R e s e a r c h with Consumer/Surv ivor Self-help G roups 32 The Transformat ive Powe r of Stor ies 35 R e s e a r c h on Empowerment and the Recove ry V is ion 41 Consumer/Surv ivors Writing in their Own Vo i c e 43 Conc lus ion 46 iii Chapter Three Theoretical Framework: Stories Researchers Tell Themselves 47 Theor ies : 48 Feminist Standpoint Theory: W e can s e e more than you can ! 48 Dorothy Smith: a diva of inquiry 50 T h e disabl ing of ability 52 Poststructural ists say, "How dare you tell the truth!" 52 Deconstruct ion: Stripping the vei ls of illusion 53 Feminis ts T e a c h How 'the Other" is Const ructed 55 Co-Cultural Theory C o m m u n i c a t e s 56 Living S y s t e m s Theory, the ' W e b of Life' 59 Autopo ies i s 61 Psychosomat i c P r o c e s s e s 62 Bringing Forth a Wor ld 63 Doctr ine of the Impermanence of Self 64 The Reconnec t ion to the W e b of Life 65 The Standpoint of the Researcher : Transparent , Loca ted and Identified 68 Limitations: What Parts of the Puzz l e are Miss ing? 72 Conc lus ion 74 Chapter Four: Research Method: How to Find Out 75 Participatory Act ion R e s e a r c h : Co-conspi racy 75 R e s e a r c h Des ign 76 Data Col lect ion: Tell M e a Story 77 Sampl ing 77 Individual Interviews 79 F o c u s G roup Interviews 80 Data Ana lys i s : N o w I'll Tell Y o u a Story 82 Narrative research : D iscovery through storytelling 82 The stories 'sick' people tell 86 Narrative analys is : Wha t does the story tell? 87 W h o , what, where , when and why 88 Pull ing the Ideas and Issues Out of the Stories 89 Ethics: Striving for H a r m l e s s n e s s 89 Quality and Rigor: Measur ing Integrity 91 Issues aroound generalizabil ity 93 Conc lus ion 94 PART TWO THE FINDINGS Chapter Five: Interview with Jane 95 D iscuss ion 99 Chapter Six: Interview with James 102 D iscuss ion 106 Chapter Seven: Interview with Valerie 109 Discuss ion 114 Chapter Eight: Interview with Ray 117 Discuss ion 123 Chapter Nine: Interview with Kanti 126 Discuss ion 132 Chapter Ten: Interview with Jeff 136 Discuss ion 147 Chapter Eleven: The Issues and Discussion of the Individual Interviews 154 Part One : The Issues from the Interviews 154 Issues in the Psychiatr ic S ys tem 154 Hospital izat ions 154 T h e psychiatric d iagnos is 154 Medicat ion i s sues 154 Relat ionship with mental health profess ionals 155 Mental health serv i ces 156 Financial se rv i ces 156 Stigmatization 156 Issues Related to Recove ry 157 The importance of peers 157 A place of our own , a safe place to recover 157 Heal ing relationships 158 Sa fe housing and adequate income 158 Meaningful work 158 Hope , possibility, and the reality of recovery 158 Part Two: D i scuss ion of the Interviews 160 The Creat ion of a Psychiatr ized Identity 160 H o p e and the Res i s t ance to a Psychiat r ized Identity 161 W h y are the Effects of A b u s e H idden or Den ied? 162 P ressu re to B e a 'Normal ' W o m a n 167 Without the labels How would they Treat Y o u ! 168 Drugs that Create Comp l i ance to Life-time U s e 171 Pathologiz ing the Love of G o d 173 Recove ry from a Psychiat r ized Identity 175 Chapter Twelve: Issues and Programs from the Men's Group Interview 177 Issues Ar is ing from the Psychiatr ic S ys tem 177 Issues Related to Recove ry 181 T h e m e s of Res i s tance 185 Sugges t ions for P rog rams 186 Mental health Information line 187 P e e r advocacy 187 Hospita l outreach program 187 Deve lopment of gr ievance procedures 188 Educat iona l workshops Counse l l ing and alternative treatments Consumer-run hous ing Suppor ted employment Connect ions/Al l iances 188 188 188 189 189 Chapter Thirteen: Issues and Programs from the Women's Group Interview 190 PART T H R E E I ssues Ar is ing from the Psychiatr ic S y s t em Issues Related to Recove ry T h e m e s of Res i s t ance Sugges t ions for P rog rams Information line Act i v i sm and advocacy Hospita l outreach Counse l l ing and alternative treatments Educat iona l workshops Suppor ted employment Connect ions/Al l iances P ee r support and crisis support, safe p laces and recovery orientation ANALYSIS OF THE FINDINGS 190 194 195 199 200 200 200 201 201 202 202 203 Chapter Fourteen: Discussion of the Findings from the Focus Groups Oppress ion : Insecure, S i l enced , Power less , & Uninformed Psychiatr ic treatments stop the anger to act W e can't afford for you to recover W e won't need to change society if you're defect ive W e only listen to ' sane ' people The mag i c of medicat ion, profit and stability too Misd iagnos is and mistreatment for the t raumat ized We' l l exc lude those who aren't nice and don't fit Different Culture, Different Treatment C r o s s disabilities: angry with no place to go St igma: from abjectivication to oppress ion Identity: f rom the Psychiatr ized to the Recove r ed How to create a psychiatr ized identity I'm not d isab led, you're the one with the problem O n or off benefits, cho ice is the key to recovery D i scuss ion of P rogram Deve lopment Pee r G roups : Providing Res i s tance and Investigating Recove ry Chapter Fifteen: Psychiatry's Function of Social Control The Os t rac i sm of Consumer/Surv ivors Only ' Sane ' Peop le A l lowed D iagnos is of the 'Other": 205 205 206 209 210 211 212 212 213 215 216 218 222 222 223 224 225 227 228 228 229 vi T h e Cyc l e of D i sempowerment and Despa i r 232 N o Cho i ce , No Recove ry 234 Soc ia l Contro l in our Everyday/Everynight L ives 235 Discrimination is about Fear , S t igma keeps the Dis tance 236 Chapter Sixteen: Resistance to Psychiatry 239 The P r o c e s s of Recove ry 239 The determinants of recovery 240 Pee r Support : Co-construct ing Stories of Recove ry 245 The ultimate civil rights movement 245 Alternat ives to being m a n a g e d 247 Benefits of the co-construction of stories 247 Consumer/Surv ivors doing it for themse l ves 249 Canad i an consumer/surv ivors say, "We can do it too". 251 T h e uplifting support of women ' s stories 253 Conc lus ion 253 Chapter Sixteen: The End is Just the Beginning 255 H o w C a n Soc ia l Workers Support the P r o c e s s of R e c o v e r y ? 2 5 5 Resea rch ing the Other Parts of the Puzz l e 264 W e Al l N e e d to Recove r N o w and Then 265 Bibliography 270 APPENDICES APPENDIX A Pe rsona l Story 283 APPENDIX B Examp les of P ee r Support P rog rams 286 APPENDIX C The Issues Ra i s ed in the Interviews 294 APPENDIX D P rograms Sugges ted to A d d r e s s the Issues 297 APPENDIX E Information Flyer 299 APPENDIX F Consen t Fo rm 300 APPENDIX G Interview Gu ide 302 List of Figures Figure 1 The Cyc l e of D isempowerment and Despa i r 233 Figure 2 The P r o c e s s of Recove ry 244 Acknowledgments I would first like to thank and acknowledge the wonderful co-operation and support which the co-researchers and coordinator of the Self-Help G roup gave to this research project. Without their honesty, commitment to growth and liberation, and wi l l ingness to be vulnerable in d i scuss ing difficult i ssues , there would not be such mov ing material to work with. The encouragement , inspiration and support of my superv isor , Pau le McNico l l , has been invaluable. I thank her for letting me bring in my writings so frequently, helping to keep me on track. I would a lso like to thank the teacher of my research course , Brian O'Nei l l , for inspiring and encourag ing my use of a narrative approach . I g ive thanks to my family, especia l ly my mother, A n n Shinkle, whose support is a lways there, w h o s e intell igence and creativity inspire me , and w h o s e belief in me susta ins me . I thank my s o n , Je remy, for being the wonderful man he is becoming , who so patiently puts up with my struggles and frustrations and encourages m e in my work. My stepfather, Bob , has a lso supported me by chal lenging my intellect and providing the warmth of a father and grandfather. I w ish to thank my dear fr iend, Son i a M c P h e r s o n , without w h o m I may never have emba rked on this educat ional journey, for the inspiration of her integrity in life a s well a s in her writing and research . I wish to thank all my fr iends who have supported m e and l istened to my struggles through these years , especia l ly Gae tanne , Mar ion, Ve ron i ca , Ben , Valer ie, Michel le, Rei la , Sarb , and Ma rsha . A n d finally, I thank all my friends from the Self-Help G roup who have accep ted and we l comed m e and who join in the work to deve lop a safe, empower ing and support ive p lace for recovery. I apo log ize for any errors or incorrect interpretations of ideas or v iews. FROM T H E VOICES OF EXPERIENCE, T H E ROAD T O RECOVERY Introduction T h e beginning of the twenty-first century is an appropriate t ime to review how we are doing as human beings, as member s of a ne ighbourhood, a nation, and of a global community . The way in which we treat the most marginal ized m e m b e r s of our communi t ies is a measu re of how far we still have to go towards realizing the full potential of what it means to be a human being. S o m e conce rned people wish to create a more inclusive society which va lues and has a place for all of its cit izens (Anthony, 1993; D e e g a n , 1996; Gya tso , 1980; Vanier , 1998). T h o s e who are des ignated a s 'chronically mentally ill' are one of the most marginal ized groups in Wes te rn society today. The only group that is possibly more marginal ized is those with intellectual disabilities (Vanier, 1998). There is now a recognition that the attitude with which we a s a society and as practitioners treat people with a psychiatric d iagnos is of ser ious mental i l lness significantly affects whether they are able to manage and grow despi te their disability. Re sea r ch has shown that their participation in the dec is ions that affect their l ives empowers these vulnerable people , increas ing their ability to live and thrive in the communi ty (Anthony, 1993; Deegan , 1996; R a p p , Shera , & Kisdhardt , 1993). C h a n g e s to policy are being made to attempt to rectify the d a m a g e that has inadvertently been produced through the way mental health serv i ces have been provided in the past. O n e of the best pract ices criteria for mental health is to provide " . . .mechanisms for meaningful c o n s u m e r 1 and community involvement in dec is ion-making" (Adult Mental Health Divis ion [AMHD] , 1998, p.11). The 1998 Menta l Health P lan for British Co lumb ia states that the involvement of consumers , famil ies and caregivers is a core va lue underlying mental health reform and that the Ministry of Health will work to ensure that they are inc luded in mental health Consumer is the term used by mental health professionals for the recipients of their services. It is supposed to represent that former 'mental patients' are now involved in consumerism; they are able to make choices and participate in decision-making in the services they receive. 1 serv i ces planning, delivery, management , evaluat ion and reform ( A M H D , 1998). T h e s e c h a n g e s have given hope to the users of mental health serv ices that their perspect ive of what is needed will at last be l istened to. However , in British Co lumb ia , progress ive mental health policies have been m a d e a long with promises to inc rease funding, but the commitment has not been reflected in the government ' s budgets (Palmer, 2000) . There are now advisory boards and commit tees throughout the mental health sys tem with m e m b e r s who are consumer/surv ivors 2 . Howeve r there are severa l prob lems with this form of participation which are d i s cus sed by consumer/surv ivors themse lves : (1), they have reported feeling defeated when suggest ions and recommendat ions which they m a k e are never acted upon; (2), on the boards which they attend, the overwhelming proportion of m e m b e r s are non-consumer/surv ivors , and the perspect ive of the consumer/surv ivor is often lost; (3), often the v iews of consumer/surv ivors and their famil ies are in conflict and the representat ion of one can work against the other (One examp le is when family m e m b e r s were instrumental in lobbying for the recent addition of communi ty committal to new mental health legislation, one o p p o s e d by consumer/surv ivors a s an increased infringement of their rights); (4), many consumer/surv ivors feel they do not have the skills needed to promote their v iews or to engage in d i s cuss ions and bel ieve that they require training in this form of participation to have their involvement be meaningful ; and (5), unfortunately, in these early s tages , the participation in decis ion-making is incomplete, with open forum consultat ions with groups of consumer/surv ivors taking place after policies have been written up, as in the recent deve lopment of criteria for Best Pract ices in Menta l Health Reform for British Co lumb ia by the Vancouver/R i chmond Health Board (Adult Mental Health Divis ion (AMHD) , 1998) Consumer/survivor is a term developed by people who use and have used the psychiatric system. The term consumer implies that people consume psychiatric services, that they are clients of the system. The term survivor represents two views: one that for many people their experiences within the psychiatric system have been traumatic but they have survived; and two that people have survived the experience of having a psychiatric diagnosis and have moved on towards recovery. 2 Consumer/surv ivors have until recently been left out of most of the d i s cuss ions and dec is ions about the serv ices provided by the mental health sys tem. In order to have a 'voice' in their own l ives, they have formed their own groups and organizat ions. T h e s e self-help and mutual-aid groups provide a place in which their members c an share their stories, receive and give support, and deve lop their own perspect ive on what it m e a n s to have been d i agnosed with a mental disorder. The ability to recover 3 from what has been cal led "ser ious mental i l lness" has been recently val idated by research and is gaining wider accep tance by those involved with mental health i s sues (Anthony, 1993; D e e g a n , 1996; N S M H C S , 1999; Trainor, Shephe rd , Boydel l , Leff, & Crawford, 1997). The concept of recovery "...has long been advoca ted by mental health consumer/surv ivors and progress ive researchers , providers and policy experts" ( N S M H C S , 1999, p.19) I deve loped this current research project in conjunct ion with a self-help organizat ion, The Self-Help G roup ( SHG ) (pseudonym), to explore the exper iences and v iews of consumer/surv ivors . The S H G is now providing support groups for their m e m b e r s with occas iona l programs of peer support and a c c e s s to non-conventional treatment serv ices . They wish to increase and deve lop recovery-oriented programs to address the i s sues of their m e m b e r s and provide serv ices which are not cove red by the professional mental health serv ices . Why this Subject and Form of Research? This research is motivated by my personal exper ience , interests and va lues ; my connect ion with the Self-Help Group ; and my training in soc ia l work. The primary motivation for this study ar ises from my own exper ience a s a consumer/survivor. Thirty years ago I was hospita l ized for six w e e k s in a psychiatr ic ward after 3 Recovery is the ability for people with a diagnosis of mental illness to be able to live happy, full and productive lives whether they still experience symptoms or take medications or not. 3 a psychot ic break induced by a combinat ion of factors, including exper iment ing with non-ordinary states of consc i ousness through the use of mind-altering drugs (see Append ix A for details). My interests in Buddh i sm have a lso affected the direction of my studies. There has been an evolution in human c o n s c i o u s n e s s towards a universal responsibility for the earth and all its inhabitants. This s tage of evolution m o v e s beyond the greed of mater ia l ism, the hatred of wars and the de lus ion of being separate from nature and not accountab le for what we do to the environment. The Dalai L a m a , winner of the Nobe l Pr ize for P e a c e and exi led political and religious leader of Tibet, says that, "...today we have b e c o m e s o interdependent and so closely connec ted with ea ch other that without a universal responsibil ity our very ex is tence and survival would be difficult" (Gyatso, 1984, p. 16). H e a lso writes that there are two ways to ach ieve this universal responsibility: to look deeper for the real c a u s e s of problems in our world, to not so lve things temporari ly; and to foster a feeling of fr iendl iness with others as if their prob lems were our own , "...trying to share the sufferings of others" (p.27). Th is c lose connect ion will lead us to be inclusive of others, to apprec iate all beings for who they are and what they add to the world. P eop l e who have been label led with ser ious mental i l lness are often exc luded from society and shunned by others. To include them and listen to what they have to say will inform us all, a s we all have a part to play. T o be happy is the desire of all be ings; just to be present to another 's suffering c an open the heart and lead to happiness . Van ie r (1998), founder of I'Arche communi t i es 4 , s ays that "...fear is at the root of all forms of exc lus ion, just a s trust is at the root of all forms of inc lusion" (p.71). It is that fear which isolates people and feeds their lonel iness. Van ier a lso writes that in the "...I'Arche communi t ies we exper ience that deep inner heal ing c o m e s about mainly when people feel loved, when they have a s e n s e of belonging" (Vanier, 1998, p.11). 4 L'Arche communities are places where people who are both abled and disabled live together in order to support and learn from each other. 4 W h e n w e include those who are marginal ized we affirm the idea that they have someth ing to give to us all. Our relationships b e c o m e mutual ; we move from individualism and striving for power to opening to each other and belonging with others. "If e a ch of us . . .opens our heart to a few people who are different and b e c o m e their fr iends, receive life f rom them, our societ ies would change . This is the way of the heart" (Vanier, 1998, p.85). Another part of what inf luenced and gave purpose to this research project ar ises from my relationship with the coordinator of the Self-Help Group . W e had met originally when she answered my ad for a new roommate . S h e lived with my son and I for a short while until we m o v e d to another home. W h e n I w a s in a field p lacement at a communi ty mental health t eam, the office of the Self-Help Group happened to be one floor down. W e reconnected and I found s o m e o n e I cou ld talk to who had a different perspect ive from profess ionals and with w h o m I could share my conce rns about the treatment of people labelled as having ser ious mental i l lness. I d i scovered that my own exper ience with the mental health sys tem w a s tr iggered by working in this p lacement and at t imes I found it difficult to dea l with the paternal ism and discrimination I heard and saw. I found the profess ionals to be on the whole , car ing, compass iona te and l ikable people, who worked hard to se rve the people that were on their c a s e load. But s o m e were imbued with a way of deal ing with those who were psychiatrically d i agnosed which did not s h o w respect for them as human beings. Th is puzz led me and added to my conce rns about the incons is tenc ies between the rhetoric of care and the actual practice of psychiatry. Part of my studies has been to investigate why this is so. I w a s a s k e d by the coordinator to help deve lop a constitution for the Self-Help G roup s o that they could apply for non-profit status. During this p rocess research w a s d i s cus sed . I needed to find a research topic and they wanted research done to back proposa ls for the funding of new programs. 5 My training a s a soc ia l worker has affected the form of this research . The va lues found in the soc ia l work code of ethics are excel lent gu ides for deve lop ing research which se rves the participants; working for their best interests and for their self-determination, not exploiting them for persona l benefit, being respectful, non-discriminatory, working towards ensur ing "...that all pe rsons have a reasonable a c c e s s to the resource, se rv i ces and opportunit ies which they require...", and "...to expand cho ice and opportunity for all persons , with spec ia l regard to d i sadvantaged or opp ressed groups and persons ( B C A S W , 1984, p.12). How is this Research Relevant to Social Work? Part of the re levance for this current research to soc ia l work is in its adherence to the principles upon which socia l work practice is based ; principles such a s beginning where the person is, fostering self-determination and empowerment , seek ing socia l just ice, and support ing and encourag ing the deve lopment of communi t ies for marginal ized people. Unfortunately, many soc ia l workers involved in mental health find it difficult to practice a s they were trained. T h e influence of the medica l mode l is very pervas ive in the s y s t ems they work in. Soc ia l work, while a lways ambivalent in its relationship with medic ine, has publicly opted for incorporation in the guise of collaboration...to s e e k accommodat ion , compromise or inf luence within the individualistic medica l parad igm. (Smith, 1990, p.20) W h e n soc ia l workers join a sys tem which has been created to perpetuate an imbalance of power in order to provide what is thought to be effective profess ional medica l serv ice , it is difficult to m a k e changes to include the shar ing of power with the users of the sys tem. Fo rbes and Sash idharan (1997) talk about user involvement in mental health and soc ia l se rv i ces and state that "...the complexit ies and contradict ions in this a rea are often ignored b e c a u s e the i s sues raised by users are fundamental ly chal lenging to the way socia l work and psychiatr ic serv ices have been conce i ved and o rgan ized" (p.482). Interventions in psychiatry and soc ia l work have e lements of control and coerc ion even in supposed ly voluntary 6 t ransact ions, and user involvement is unlikely to result in significant changes b e c a u s e of "...the premise on which psychiatry and socia l work are organ ized and provided.. ." (Forbes & Sash idha ran , 1997, p.486). A l so , it is often the c a s e that "...user involvement in these serv ices is little more than an attempt to facilitate the smooth and efficient running of existing care provis ion" (p.486). W e as soc ia l workers, working in s y s t ems based on the medica l mode l , c an add to the suffering of those with a psychiatric d iagnos is when we v iew them in the limiting ways inf luenced by the s c i ence of psychiatry. By working for their empowerment , encourag ing self-determination and support ing self-help initiatives, soc ia l workers can b e c o m e good allies. W h e n w e are not able to follow socia l work principles our power to make change is d iminished and the quality of our work can suffer a s we are relegated to the status of subordinate mental health profess ionals . The struggle to empower consumer/surv ivors and change how they are treated s o that recovery is encouraged , is a lso the struggle to b e c o m e the type of profess ionals that we may have env is ioned when we entered socia l work training. A s B i shop (1994) writes, "I a l so bel ieve that one must be in the p rocess of liberation from one 's own oppress ion to b e c o m e an ally in another 's l iberation" (p.95). Soc ia l workers are trained to look at the w e b of relat ionships and structures that affect individuals. T h e study of how people actually exper ience the psychiatr ic s ys tem as users c an uncover insights that could improve the serv ices they receive. Studying how a person recovers their mental health may shed light on the effect of factors beyond the mental health sys tem. T o determine how to best support a person to recover their mental health it s e e m s logical to study those who are in the p rocess of recover ing or who have fully recovered . T h e deve lopment of peer-led alternatives is in part f rom consumer/surv ivors not see ing themse l ves a s consumers but rather a s 'victims' and 'survivors ' of psychiatr ic serv ices . In order to avo id misrepresentat ion of serf-help groups and their m e m b e r s it is useful to have research 7 which reveals their perspect ive and the i s sues they face in their day-to-day l ives. Th is research , with its participatory approach and the use of a researcher who shares , in part, the standpoint of the members , can provide f indings that will inform the practice of mental health soc ia l workers and aid them in their work with self-help groups of consumer/surv ivors. The inclusion of a narrative style of research and the theories on which it is ba sed are eminently useful for socia l work practice in all a reas . There is the possibility of the transformation of identities and profess ional pract ices from the shar ing of stories within and between groups. Pe rhaps this research and the stories told may affect the practice of a future soc ia l work profess ional . Soc ia l work educat ion needs to include the consumer/surv ivor perspect ive a s well a s that of the self-help movement , especia l ly s ince the results f rom research show how important empowerment and peer support are for recovery. Present ing research from the perspect ive revea led by the stories of consumer/surv ivors can work towards eliminating the discrimination they exper ience . Conclusion There are positive c h a n g e s being m a d e to the pol ic ies of mental health which al low people with ser ious psychiatric d i agnoses to participate in the dec is ions that effect their l ives. F rom people, s u c h as myself, who have exper ienced what it is like to have a d iagnos is of ser ious mental i l lness and from other conce rned people, there are quest ions about how we a s a society and within mental health serv ices are treating these marginal ized people . W e wish to encourage the inclusion of those who are psychiatrically d i agnosed in all a spec t s of communi ty life, to share what they have learned and to al low them to be empowered to live a s full a life a s possib le . Soc ia l workers with their training and value-base are eminently suitable to be all ies to consumer/surv ivors and their self-help groups. They c an learn what these marginal ized people 8 need and want from research which a c c e s s e s the perspect ive and knowledge of consumer/surv ivors . A frequent complaint by those who use the mental health sys tem is that they are not l istened to. This study w a s conducted to redress this complaint ; to listen to the stories of the people who struggle with the exper ience of being labelled with a d iagnos is in their use of psychiatr ic se rv i ces , and through the p rocess of recover ing their mental health. 9 PART ONE: CONTEXT, THEORY AND METHOD Chapter One The Roots and Practices of Present Day Psychiatry Science, the Medical Model and Psychiatry The psychiatric sys tem is a part of the medica l sys tem and der ives much of its structure and the form of its pract ices from the medica l model . T h e medica l mode l in turn has its foundat ions in a scientific approach to medic ine. The scientific method and its base in rational thinking began to take form in the seventeenth century. T h e Car tes ian-Newtonian 5 worldview has dominated intellectual thinking s ince that t ime and is only now being cha l lenged by a new non-posit ivist 6 paradigm (Bordo, 1987). The century, f rom 1550-1650, when the scientific model emerged , had "...the worst food crisis in history, violent wars , p lague, and devastat ing poverty", and the "... imagery of nature a s an unruly and malevolent v irago w a s no paranoid fantasy" (p.111). Nature b e c a m e a "She" , the "Other", "...particularly the otherness of the female. . .which threatens to swal low the individual 'like a speck ' . . .a reminder of how much lies outside of the grasp of m a n " (Bordo, 1987, p.111). Bordo (1987) writes that this " . . .Cartesian 'mascul in izat ion of thought'... is an intellectual 'moment ' of an acute historical flight from the feminine, from the memory of the union with the maternal world, and a rejection of the va lues assoc ia ted with it" (p.9). Th is shift in thinking has a lso been cal led the "invention of mind" ; where thinking b e c a m e an internal, rational p rocess and consc i ousness , instead of residing both inside and outs ide. It w a s 5 The Cartesian-Newtonian worldview combined Descartes' philosophy and his establishment of the importance of rational thinking with a neutral, objective view and Newton's development of the scientific method in his investigations of the physical sciences (Bordo, 1987). 6 Positivism is a theory which states that " theology and metaphysics are earlier imperfect modes of knowledge and that positive knowledge (knowledge that is independent of changing circumstances) is based on natural phenomena and their properties and relations as verified by the empirical sciences" (Merriam-Webster, 1997, p.909). 10 bel ieved that c o n s c i o u s n e s s w a s now lodged only within the skull of a human be ing. The Wes te rn emphas i s on individualization w a s reinforced with this interiorization (Bordo, 1987). The Car tes ian project brought with it doubt and people lost faith in their relationship to their own bodies and the natural wor ld. Bordo (1987) desc r ibes the change as a ". . .separation f rom the matemal-tUe immanent rea lms of earth, nature and the authority of the b o d y - a n d a compensa to ry turning toward the paternal for legitimization through external regulation, t ranscendent va lues , and the authority of law" (p.58) No longer could people rely on their percept ions, 'gut' feel ings or subject ive judgments a s being reliable sou rces of knowledge from which to act. Only what w a s objective and knowable, rationally and scientifically, had any validity. The Protestant reformation fol lowed this shift with a purging of the pagan aspec t s and the more feminine representat ions incorporated in its practice. Th is resulted in ' G o d the father' a s the only source of refuge where people could find reassurance for their separat ion anxiety. Th is shift in worldview created the so-called 'Cartes ian anxiety' with an insecurity which has haunted Wes te rn psychologica l deve lopment s ince that t ime. Bordo (1987) v iews this fear or free-floating anxiety a s a root of the compuls i ve need to control nature so that we are not overwhe lmed by it, and the blind grasping at material accumulat ion and progress which has resulted in the degradat ion of the environment. Burstow (1992), in a feminist perspect ive of this t ime, f o cuses on the wielding of patriarchal power, through the persecut ion of so-called witches, in the attempt to eradicate the feminine knowledges held by w o m e n healers . The different vo ice of feminine knowledge is based in what Bo rdo (1987) cal ls "sympathy", the combinat ion of c l o seness , connec t edness and empathy. T h e s e w o m e n healers were "...the inheritors of early religions..." and , "...century after century they defied patriarchy, bringing women ' s knowledge, spirituality, and ways of heal ing to 11 those in need " (p.23). They were very popular with the public and competit ion for the emerg ing doctors of scientific medic ine. P rogress , s ince the beginning of this age of reason , has been bound up with the naming and control of the natural world. S ince the evolution of s c i ence w a s guided by males , it w a s men w h o dec ided what and who w a s in need of control. This purging of feminine ways of heal ing and gathering knowledge se rved both the male-dominated Church and the male-dominated medica l profess ion, and left them to dea l with the problem of m a d n e s s (Bordo, 1987; Burstow; 1992; Foucault , 1965). Psychiatry wins control of 'mad' people. Foucaul t (1965), in M a d n e s s and Civil ization , sets out to track the evolution of the idea that m a d n e s s is a threat to society, and that m a d m e n (and especia l ly madwomen ) need to be named and control led; in the 1800 's , locked in an asy lum, in the year 2000 , managed by medica l treatments. He begins in the 1500 's when insanity w a s cons idered a part of everyday life, and from there, he attempts to find how and when the wall dividing m a d n e s s from reason w a s built. Wha t is constitutive is the action that div ides m a d n e s s , and not the sc i ence e laborated once this divis ion is made and ca lm restored. Wha t is originative is the caesu ra that establ ishes the d is tance between reason and non-reason; reason 's subjugation of non-reason, wresting from it its truth as madness , cr ime, or d i sease , der ives explicitly from this point. (Foucault , 1965 , ix) T h e dividing of reason from unreason occurred a longs ide the deve lopment of the scientific method, the ultimate tool of reason . Doctors , with their enl ightened scientific background , announced that m a d n e s s did not arise from demon i c posses s i on or distressing life c i r cumstances , but from a d i sease p rocess in the brain. A n d s o psychiatry a s a medica l profess ion began . T h e s e doctors b e c a m e the custod ians of the 'mad ' in asy lums and promptly set about testing physical treatments to 'cure' their patients (Burstow, 1992). 12 In the Wes t , the scientific f ramework and success fu l research into the theory of ge rms , led to an advancement of medic ine and the deve lopment of the b iomedica l mode l in the 1800's . The biomedica l mode l is based on the idea that every d i s ease has a pathogenic c a u s e ; that it is c a u s e d by a bacter ium or virus, or by a malfunction of the physical sys tem. Mental i l lness w a s thought to be an organic dysfunction of the brain which precipitated b iochemica l c h a n g e s in the nervous sys tem due to the d i sease process . However , in the 1800's , even with an al l iance with neurologists, other than syphil is, cerebra l atherosc leros is , chronic intoxication and brain injury, doctors were unable to find ev idence to validate this medica l mode l (Cocke rham, 1992). Doctors ' control over m a d n e s s w a s based on the belief that it a rose from physica l pathology. The use of physical t reatments and the consequent s u c c e s s in 'control l ing' m a d n e s s (not curing it) was proof that it must have a biological c ause . The movement away from asy lums and into genera l hospitals a lso legitimized psychiatry a s a medica l sc ience . Today , treatment by medicat ions is profitable bus iness for pharmaceut ica l compan ies . Control by drugs is cheape r than human intervention for the elderly, the d isab led , rest less chi ldren, as well a s d ist ressed psychot ics . If control of the disruly is one of psychiatry 's funct ions, then medicat ion treatments which can be forced are better than talking therapies which cannot (Pilgrim & Rogers , 1993). Can humans be repaired like a machine? The medica l mode l v iews the body a s a mach ine ; d i sease and i l lness are exp la ined , " . . . through an engineer ing metaphor in which the body is s een a s a ser ies of separate but interdependent sys tems . Ill health is treated as the mechan ica l failure of s o m e part of one or more s ys t ems and the medica l task is to repair the d a m a g e " (Doyal , 1995, p.3). The focus is on a part of the individual, not the whole, or the context in which they live, their env i ronment and relationships with others. The medica l model reduces all the c a u s e s of d i sease to biological determinants, and "...works most comfortably where there is a b iochemica l and/or structural defect that provides a s imple key to understanding the d i sease being studied" (Gillett, 1994, p.1127). This 13 reduct ionism b e c o m e s too narrow even in physica l medic ine, in that it ignores the socia l and economi c factors relating to i l lness and health. Us ing the determinants of health, the authors of the literature on health promotion recognize that the lack of safe and suitable hous ing , poverty and isolation are strong factors in the ill health of individuals, especia l ly w o m e n and minority g roups (Adult Mental Health Div is ion, 1998). Scientific medicine and how to 'empty' a patient. Soc io logists , in studying the institution of scientific medic ine, raise conce rns that human rights and health c o m e s e c o n d when they conflict with the protection of the internal structure and soc ia l power of the institution. The institution of medic ine follows the dominant parad igm with its assumpt ions of object iv ism, reduct ionism and mechan i c determinism. H u m a n s are s e e n a s conglomerat ions of bits of matter and d isconnec ted parts. Peop le are treated a s totally separa ted from the context of their l ives and f rom each other, ignoring their relationships and emphas iz ing their independence . Institutional power has deve loped and been accepted which legit imizes treating human lives mechanica l ly ( S tambolov ic , 1996 ). A human being treated by scientific medic ine b e c o m e s a patient and , "...is treated a s "emptied ' , i.e. as an entity depr ived of internal reality, without subjectivity, without intentions, without any purpose of personal e x i s t e n c e " (p.302). The good patient is pass i ve and dependent on the medica l experts. W h e n the gap between the exper ience of the patient and what the experts accept as real and poss ib le w idens , "this imba lance of power reduces the patient's self to the expert 's definition, reinforcing the tatter's power and further subduing the patient" (p.302). Th is gap is particularly large when the expert is a profess ional in biological psychiatry and the patient is a person in the midst of an emot ional crisis. The identity shift is comple ted after a person is g iven a d iagnos is and then is treated a s being equated with their i l lness. 14 T h e process of losing one ' s prev ious identity and taking on one as a psychiatr ic patient has been ca l led a mortification; a p rocess where the person is s h a m e d and humil iated, str ipped of their rights and their position as a subject in their own l ives . Peop le b e c o m e the institution's objects and are de tached from the rest of their life and history (Smith & Dav id , 1975). A n d a s has been clearly the c a s e in psychiatry, "...for individuals conceptua l ized by scientific medic ine, human rights are irrelevant, in establ ishing therapeut ic t ransact ions they e ven present an obstac le " (Stambolovic , 1996, p.302). Medicalization: Don't Worry You're Just 'Sick'! The medicalization of deviance. The medical izat ion of dev iance is the appl icat ion of 'd i sease ' explanat ions to certain types of deviant or abnormal behaviour. C o n r a d (In D i ckenson & Andre , 1988) p roposes five parts to this p rocess : (1) group(s) holding s o m e level of power define a behaviour as deviant and problematic; (2) current forms of containing the behaviour are d e e m e d inadequate or unacceptab le ; (3) medica l profess ionals accept that this deviant behav iour is within their doma in ; (4) s o m e form of medica l control/treatment is avai lable; and (5) there must exist " . . .ambiguous organic data a s to the source of the problem" (p.298). At t imes, medica l researchers , possibly funded by pharmaceut ica l compan ies , investigate the poss ib le dev iance and make d iscover ies which may legitimize its medical izat ion. Finally lobbying is m a d e to the appropriate organizat ions, and if success fu l , is fol lowed by the institutionalization of a medica l dev iance designat ion (Deutschman, 1998). Behav iour that has not before been def ined a s medica l is now seen as being indicative of i l lness and d i sease and the person is des ignated a s 'sick'. This s ick role has four components , with the s ick person : (1) e x c u s e d from the obl igations of soc ia l roles; (2) exempted from negat ive judgment , including penalt ies from the failure to perform duties; (3) obl igated to recogn ize the i l lness as undesirable and to want to get well ; and (4) bound by duty to seek and cooperate with competent , medica l treatment (Deu tschman , 1998). 15 Medic ine inscr ibes the body into a d i scourse of objectivity. The body is material ized even as the self is ban ished , creating the disjunction which is the core of...the mind/body problem. In the realm of the ordinary, the body is the self, the site of my exper iences , the fulcrum of my movements , the source of my perspect ives . I exper ience myself a s embod ied . In the realm of medic ine, the body is rendered an object. It is inspected, palpated, poked into, cut open . F rom being a locus of self, the body is t ransformed into an object of scrutiny. (Young, 1998, p.3) Apply ing the-'sick- role to psychiatr ic d isorders helps the psychiatrist and other mental health profess ionals exact control of the patients they see . T h e other arm of psychiatry is the legal powers invested in the profess ion. T h o s e cons idered ' dangerous ' to themse l ves or others can be committed to hospital. Many consumer/surv ivors say that they are grateful that they were s c o o p e d up before they did any harm. However , research has shown that psychiatr ists are not able many t imes to predict ' dange rousness ' . A b u s e s c an and do occur and people with a psychiatr ic d iagnos is lose their rights a s cit izens when committed. In the new Bill 22 , to be 'deteriorating' and non-compliant with medicat ion is g rounds for one psychiatrist to commit a d i agnosed person ; there is no longer the requirement for a s e c o n d opinion by another physic ian to insure the committal is absolutely necessary . They say they can tell if you're normal or not. Abnormal i ty (or dev iance) is def ined in soc io logica l terms as behaviour "..which fails to conform with the accepted norms and s tandards of a socia l group or system.. . " (Knuttila, 1996, p.248). Abnormal i ty c an be seen a s being social ly constructed and is variable through t ime and space . O n c e labeled a mental i l lness, homosexual i ty is now cons idered a somewhat accepted form of sexua l orientation. Soc ia l act ion removed homosexual i ty a s a psychiatric d iagnos is . W h e n e v e r we hear s o m e o n e labeling another a s abnormal we need to a sk for what purpose they are making the judgment. A re they trying to help the person they are label ing, or are 16 they trying to show that they are different f rom, and better than that pe rson? A n d if their intention is to help, is there any ev idence to sugges t that applying an abnormality label will actually further that intention? (Cap lan , 1995, p.44). Whi le all cultures recognize m a d n e s s as in psychos i s , s o m e do not s ee it a s an i l lness, while others differentiate between psychot ics a s deviants or as s h a m a n s . Other forms of distress, and behav iours that are s e e n in the W e s t as ' i l lness ' are not medica l ized in other countr ies. (Bowers, 1998; Fe rnando, 1991, 1995). The psychologist Cap l an (1995) writes about how psychiatrists deve loped the Diagnost ic S y s t e m s Manua l (DSM) . S h e states that these m e n , with now a few w o m e n , have dec ided what is and what is not normal , and deve loped d i agnoses that appear to have scientific s ignif icance but which often don't. Other feminists have been very critical of the d iagnost ic sys tem and its role in medical iz ing problems, especia l ly women ' s problems. Psychiatry is a billion dollar, growth industry, tied into the pharmaceut ica l compan i e s and serv ing the interests of patriarchal capita l ism, which s e e k s to control or incapacitate any dev iance from traditionally a s s igned roles (Burstow, 1992). A s the feminist economis t Marilyn War ing (In N a s h & Martin, 1995) pointed out, tragedy may be profitable; what may look dehumaniz ing and distressing is actually providing growth in the economy , contributing to the g ross national product. H u m a n pain is not an item on the ledger which shows profits and expenses . D iagnos is has b e c o m e a way in which therapists can make their clients into the "other', the "not me' , not truly human but rather a label or a case . . .D iagnos is contradicts a political ana lys is , b e cause it locates the problems in the individual, thereby privatizing both the distress and its implied solutions, and def ines the distress as i l lness, mov ing the locus of analys is f rom context to person . (Brown, 1994, p.125) The assumpt ions and beliefs of the person who m a k e s the d iagnos is are a lso not looked at. H o w they v iew their client has t r emendous impact on how they will d i agnose . F raser (1999) 17 quotes J ung and his insight into how medical izat ion w a s reflected in Freud 's d i agnoses . "F reud a lways remained a physic ian. Fo r all his interest in other f ields, he constantly had the clinical picture of neurosis before his mind's eye- the very attitude that makes people ill and effectively prevents them from being healthy" (p. 13). C o a t e s (1997), himself a psychiatrist, points out that a practitioner m a k e s a d iagnos is a s if it has scientif ic validity while in fact disregarding what he or s h e does a s an observer . He desc r ibes how this occurs : If s o m e o n e ' s behav iour is t roub lesome to me and if I d isregard the criteria by which I make this observat ion, then I a m free to attribute any discomfort I exper ience to the other person . If I can construe his or her behaviour to chemica l imba lances and prob lems within his or her ' se l f then I c an delegit imize "...his or her conduct as an express ion of an au tonomous unity" (p.2). I c an do the s a m e to others with the s a m e presenting behav iours . I c an do this and ...take no heed of the context of myself ask ing quest ions, or the assumpt ions I make to generate them...I c an persuade people they are ill, pe rsuade them to be patients through psychiatr ic rhetoric a lone. N o physiological ev idence is required or even necessary . This is a doma in of power and ethics, not medic ine, (p.3) Whatever your problems, we have a pill for you. There are conce rns that psychiatry is expand ing its definitions of mental d isorder to include prob lems that are truly f rom socia l and economi c c a u s e s . Robert Spi tzer (Cited in Brown, 1994), a leading psychiatr ic d iagnost ic ian, d isplays a strange circular logic in the following statement, "If we treat it, it must be d iagnosab le , s ince anything that is not d iagnosab le would not require treatment from a profess ional " (p.130). W h o m e v e r psychiatrists treat must exhibit a pathology which fits s o m e psychiatr ic d iagnos is a s they only treat people with ser ious mental health i ssues . This v iew does not admit to mis takes being made , or temporary states being misd iagnosed a s permanent. 18 C a p l a n (1995) warns that d i agnoses are determined by fewer than two hundred people who are listed a s being consul ted in the production of the DSM-III-R, and these are mostly psychiatrists, ma les and whites. It is "...a smal l group to m a k e p ronouncements about normality and mental health and disorder" (p.110). Cap l an and other feminists fought hard to get the d iagnos is of premenstrual dysphor ia disorder, which pathologized the ext remes of the premenstrual syndrome, taken out of the manua l . But it w a s still put into the D S M under the 'provis ional ' appendix , a place to include d i agnoses which still need more research for full approva l . The name was changed to the late luteal dysphor ia disorder, and psychiatrists were told "...to go a h e a d and use them as if they were official...And they...were widely u sed without much regard for their unproven, unsupported status" (p. 109). Many bel ieve that it is their internal thought p rocesses and emot ional states that are the c a u s e of their unhapp iness . This l eads them to seek help from mental health professionals . However , their unhapp iness could actually s tem from discrimination b e c a u s e of race, sexua l orientation, appearance , mental or physica l condit ion, or, a s many w o m e n exper ience , from being overworked, underva lued, and poverty str icken. P rofess iona ls often reinforce that it is their individual psyches that are at fault, and that they must adjust to the c i r cumstances in their l ives. A n d e ven if they identify soc ia l c a u s e s they are not trained to think in terms of socia l act ion or have any m e c h a n i s m s to effect change . They often feel the best they c an do is to help by providing relief through medicat ion. Unluckily, instead of relief, many people find more suffering from the treatments psychiatrists prescr ibe, with powerful drugs, e lect roshock treatments, isolation and physica l conf inement. They can end up traumat ized by these 'cures ' . The Current Rule of Biological Psychiatry The medica l mode l , with psychiatrists who are trained in scientific medic ine, has the most influence over the p rocesses which occu r in the mental health sys tem, e ven though there are other mental health profess ionals , such a s socia l workers , who b a s e their work in different 19 models . T h e i l lness f ramework dominates mental health serv ices because psychiatrists are the dominant profess ionals (Pilgrim & Rogers , 1993). Ha l a sz (1994), a psychiatrist, uncovers what he cal ls the pseudo-sc ience of biological psychiatry. H e refers to severa l research projects which highlight that sc ience is culture-bound, in conflict with the "...widely held orthodox v iews of the impartial, value-free status of sc i ence " (p.8). T h e explanation of the nature of mental health and i l lness is complex and filled with incons is tency and paradox. H a l a s z (1994) s a y s that by side-stepping this reality biological psychiatry turns into sc ien t i sm 7 , "...a very prejudiced approach which, before it has cons idered its subject, c la ims to know what is the most appropriate way of investigating it" (p.9). H a l a s z (1994) states that only lip serv ice is paid to the integrative paradigm of the 'b iopsychosoc ia l ' mode l . H e jo ins others in cautioning that this biological reduct ionism "...could legitimize psychiatr ic treatment being reduced to this or that pill..."(p. 10). In psychiatry, even though there is s o m e recognition that soc ia l and e conomi c factors affect and may c a u s e s o m e forms of mental i l lness, pract ioners do not respond to these non-biological factors. This negl igence is justified by biological psychiatrists who bel ieve that the results are b iochemica l d is turbances in the brain, whatever the reasons or c auses . The b iochemica l determinism is pervas ive and psychiatrists v iew that whatever the c a u s e s , they have phys ica l treatments that work with psychopharmaceut i ca l s and e lect roshock therapy. Genet i c research is said to reinforce the medica l mode l in psychiatry. Behav iora l genet ic research has attempted to show the importance of g e n e s in the t ransmiss ion of certain mental d isorders. Sch izophren ia and m o o d disorders are found to run in famil ies, e ven though this does not account for the majority of c a ses . T h e relationship between heredity and the role of 7 Scientism has an exaggerated trust in the efficacy of the methods of natural science as applied to all areas of investigation, especially in non-physical sciences (Merriam Webster, 1997). It "...involves a mechanical and uncritical application of habits of thought to fields different from those from which they have been formed...", and as such, "...is decidedly unscientific in the true sense of the word" (Halasz, 1994, p.9). env i ronment is still not clear, but psychiatrists think that a person may be genetical ly 'p r imed ' , and the onset of mental i l lness is dependent on triggers f rom environmental factors such as stressful life events (Cocke rman , 1992). In contrast, the proponents of socia l learning theory bel ieve that upbringing and learned behaviour may be at the root of mental d isorders . The disposit ion for mental i l lness to be transmitted in famil ies may not be proof of biological c ause . The twin studies that s o m e researchers bel ieve prove biological c a u s e are contested by others (Pilgrim and Rogers , 1993). The home team approach to psychiatric control. D i ckenson & Andre (1988) call the rise of communi ty psychiatry a "...break with clinical (medical) psychiatry and its rep lacement by a national ized form of industrial psychology" (p.298) S o m e profess ionals in communi ty mental health have cha l lenged the medica l viewpoint; where psychiatr ists treat mental illness, soc ia l workers and psychologists are emphas iz ing mental health. The use of psychotropic drugs did help legitimize psychiatry as a medica l profession but "...still did not prove that mental d isorders had organic c a u s e s " (p.300). For example , even with all the research into the poss ib le organic c a u s e s , a recent ". . .extensive review of the neurochemistry and neuroendrocr inology of sch izophren ia (L ieberman and Koreen , 1993) found a ' fragmentary body of data which prov ides neither a consistent nor conc lus ive ev idence for any speci f ic e t io logy ' " (Fernando, 1995, p. 13). The 'b iopsychosoc ia l ' mode l w a s deve loped to add the psychologica l and socia l factors to the poss ib le c a u s e s of mental i l lness; the mode l cove rs all b a ses as there has been no real proof of organic c auses . Many psychiatr ists and neuroscient ists bel ieve it is just a matter of t ime until incontestable proof is found. The disputes a s to c a u s e s are relevant for professional power, pay and prestige (D ickenson & Andre , 1988). There have been attempts to broaden the v iew of how mental i l lness is perce ived; for example , the Canad i an Mental Health Assoc ia t ion has deve loped a knowledge resource base . Th is knowledge resource base recogn izes experiential , and customary/traditional knowledges 21 a s well a s the usua l ones from medica l and socia l s c i ence . The experiential , the direct exper ience of the mental i l lness and the knowledge that it g ives , is usually d iscounted and discredited. The traditional or informal knowledge, convent ional w i sdom of family, fr iends and community , is a lso not often a c c e s s e d , a l though it cou ld be used to advantage . Trainor, Pomeroy , and P a p e (1997) hope that C a n a d a , with its history of public involvement in health care , may be able to "...explore a more comprehens i ve approach to understanding mental Il lness" (p. 115). With the prominence of biological c a u s e s and treatments of mental i l lness, psychiatr ists d i agnose and treat with medicat ions. Talking therapy has been relegated to the "assistant" mental health profess ionals . Nurses , soc ia l workers and psychologists do clinical work with patients address ing their psychosoc ia l needs and counsel l ing them about their prob lems in day-to-day living . The involvement of counsel l ing at this level c an be very helpful, but still there c an be many problems. T h e s e ar ise mainly from the fact that the power and legal authority rest in the hands of psychiatrists. P rob l ems can a lso be due to the power imba lances between therapists and clients, and/or the paternal ism of mental health profess ionals working in a sys tem based on the medica l mode l . R a p p , S h e r a and Kisthardt (1993) speak of the negat ive side-effects of talking therapy in a clinical setting. What they call the soc ia l i a t rogenes is 8 of this intervention can increase stress and d e p e n d e n c e while reducing cho ice and self-responsibility. The counsel l ing therapy may negatively impact empowerment , self-esteem and self-efficacy. In my pract icum at a communi ty mental health t eam, I s a w instances of the paternal ism, infantilization, d i sempowerment , and reduct ionism that I had read about. O n the other hand, there were a lso profess ionals who cared for the people they saw, who worked for their empowerment within the restrictions of the sys tem. Iatrogenesis is the process of inadvertently inducing an effect in a person from an intervention by a surgeon or physician, or from a treatment or diagnostic process. 22 Wha t c o m p o u n d s the dual prob lems of control and consent is the iatrogenic effects of physica l treatments. Pa rk inson i sm and Tardive Dyskenes i a , Tardive Dement ia and occas iona l ly death from Neurolept ic Mal ignant S ynd rome all result f rom the use of neuroleptics; tranquil izers are highly addict ive; and e lect roshock therapy e rases memor ies and may cause permanent brain damage . Just take this pill and go buy yourself a hat. F rom numerous epidemiologica l surveys it has been shown , "...that depress ion and anxiety are the leading mental health prob lems a m o n g w o m e n but are found less frequently a m o n g men " (Padget, 1997, p.523). O n e in four w o m e n suffer f rom domest i c abuse . There is a lso the potential of exper ienc ing sexua l a b u s e as girls, sexua l harassment , and rape a s adult w o m e n . T h e s e all too frequent t raumas result in major depress i ve ep i sodes being many t imes more likely for w o m e n unfortunate enough to be victims of abuse . W o m e n ' s position in society, their deva lued status, chronic strain from poverty and sex role burden a lso have their impact. Poverty has been shown to be linked to higher distress and depress ion (Padget, 1997; S to lzman , 1988). Femin is ts bel ieve that the establ ished socia l norms are not acceptab le a s the standard for which abnormality is to be def ined, or if it should be def ined at all. The norms of our society are under a patriarchal, capitalistic umbrel la , and a s such can be injurious to w o m e n and minority g roups (Brown, 1994; Burstow, 1992). D iagnos is has a gender bias when w o m e n are more easi ly d i agnosed as having a mental d isorder and more often d iagnosed a s having depress ion and histrionic personality d isorders (Cap lan , 1995; Padget , 1997). W h e n men manifest antisocial behaviour or a lcohol abuse they are less likely to be d iagnosed by phys ic ians a s having mental d isorders (Padget, 1997). The power to d i agnose is the power to def ine another 's reality and potentially to restrict their f r eedom. A w o m a n d i agnosed b e c o m e s an object, no longer subject or in control of her own life (Brown, 1994; Smi th , 1990). Smith (1990) desc r ibes the patriarchal nature of psychiatry: 23 T h e standpoint of men is built into the traditions of its theorizing and knowledge; that effect is reinforced by the cont inued p redominance of m e n , particularly in dominant psychiatr ic profess ion. Beyond that, however , psychiatry participates in and reinforces the patriarchal character of locally produced orders, such a s famil ies, a s a routine effect of its operat ion. (P.32) Be ing d i agnosed m e a n s treatment by medicat ion, the main treatment un less o n e is able to afford private therapy. W o m e n in many countr ies are prescr ibed more psychotropic drugs, twice a s often a s men . It has a lso been found that w o m e n are more likely to suffer f rom side-effects and to be at risk of drug interactions with their hormonal f luctuations (Padget, 1997). T h e interaction of medicat ions with w o m e n ' s life cyc les , m e n s e s , pregnancy , or m e n o p a u s e need to be clearly investigated or expl icated in drug research (Morrow & Chappe l l , 1999). Explanat ions of women ' s differing ways of a c cess i ng health care such a s having greater need , being higher health care users , or more amenab l e to drug taking were all d i smissed by severa l s tudies made . T h e final explanat ion left w a s gender stereotyping in drug prescr ibing, which, "...fits soc ia l control (Zola, 1972) and , in particular, a s a means of manag ing and controll ing women ' s behaviour" (Padget, 1997, p.527). W o m e n are at risk of acute stress r e s p o n s e s 9 and Pos t Traumat ic S t ress R e s p o n s e ( PTSR ) f rom family v io lence and sexua l abuse . Many w o m e n w h o end up in the menta l health s ys tem have histories of abuse which are not elicited and/or add re s sed and are then revict imized by the coerc ive and restrictive treatments. A s reported by the H u m a n R e s o u r c e Assoc ia t ion of the Northwest, "...two thirds of w o m e n who are chronic users of public mental health have exper ienced early ch i ldhood sexua l a b u s e " (Caras , 1999). In another study of w o m e n psychiatr ic inpatients, "...83 per cent had exper iences of seve re physical or sexua l abuse a s Following the terminology used by Morrow and Chappell (1999), I use stress responses rather than stress disorders as they assert that the distress that is experienced is a natural response to trauma not an aberration. 24 children or adults" (Morrow & Chappe l l , 1999, p.33). To avoid revictimization and s t igma, se rv i ces need to be tailored to the women ' s needs for safety with non-coercive protected env i ronments and with the provis ion of appropriate psychosoc ia l treatments. Many feminists have written that the medica l sys tem and psychiatry in particular perpetuates gender inequality (Brown, 1994; Burstow, 1992; Smith , 1990). W o m e n who characteristical ly act " inappropriately"-who defy their role a s being-for-man general ly and a s body-for-man in part icular-stand a very strong c h a n c e of being labeled "borderl ine personality disorder" or psychot ic and of being institutionalized. (Burstow, 1992, p.34) Bes ides being a p lace that is the, "...ultimate enforcer of patriarchal norms" (p.33), psychiatr ic institutions a l so divert attention from the c o n s e q u e n c e s of the inadequate support for many w o m e n in society today. " W o m e n have been mis labeled profoundly with psychiatr ic d isorders and individual psychopathologies , which are instead the c o n s e q u e n c e s of soc ia l , political, e conomic , psychologica l , and physica l oppress ion of w o m e n " (Cap lan in C o w a n , 1996, p.21). Chi ldren are apprehended and often never returned to mothers who are labelled with chronic mental i l lness. "Societal Att itudes and wide spread myths and s t igma surrounding mental i l lness cont inue to perpetuate the belief that w o m e n with mental i l lnesses are incapable of having and caring for chi ldren" (Cowan , 1996, p.40). Instead of looking at the socia l problems, lack of support, and inadequate serv i ces they encounter , mothers are individually b lamed and pun ished. In addition to being w o m e n , those with different sexua l orientations, those from minority ethnic backgrounds , and/or with other disabilities may a l so find themse l ves with psychiatric d i agnoses and prescr ibed medicat ions instead of receiv ing counsel l ing for the distress from their prob lems in living and the discrimination they suffer f rom. 25 There are g a p s through which many consumer/surv ivors in need of support will fall, including the prob lems of dual d i agnoses which a lso are not well add ressed . "Most resources for subs t ance a b u s e are not des igned to help w o m e n who have a mental i l lness d iagnos is " (p.41). Morrow and Chappe l l (1999) r e c o m m e n d , be cause of the lack of understanding about w o m e n who are dually d i agnosed , that there needs to be more recognit ion of the interconnect ions between subs tance abuse , mental health problems and histories of physica l and sexua l abuse . 'Damaged' people don't recover! Medica l authority, with the e conomi c back ing of pharmaceut ica l compan ies , has control of the mental health sys tem. B a s e d in an i l lness-based parad igm, psychiatry looks for pathology in the behav iour of their patients. P rogress i ve mental health profess ionals , with knowledge of the p rocess of recovery for people d i agnosed with ser ious menta l i l lness, bel ieve they can recover, support their strengths and abilities, and encourage them to take responsibility for and control ove r their i l lness and recovery. This support is needed to counter the internalized s t igma from a psychiatr ic d iagnos is and the d i sempowerment of a sys tem which requires pass i ve patients who are controlled and managed . Unfortunately, the ideology of biological determinism, which many psychiatrists endorse , prec ludes the possibility of significant recovery for those whose brains are bel ieved to be defect ive. The maintenance of stability is the primary goa l of treatment and keeping s t ress to a min imum is part of what practitioners try to control to protect their patients f rom relapse. B e c a u s e a psychiatric disability d iscounts people 's ability, and/or inc ludes the propensity for de lus ional thinking, people are not encouraged to take control of their l ives. They are often superv i sed to ensure they comply with taking their medicat ions. E v e n with the best intentions empowerment in a recovery p rocess c an not be susta ined in a sys tem which has power imba lances and the ability to coe r ce and commit (Segal , S i l verman, & Temk in , 1993). The exploitation of peer support . Mental health s y s t ems are discover ing that peer support is a va luable addition to their serv ices . R e s e a r c h on the importance of peer support 26 and role-modeling, a s well a s the usefu lness of peers to reach those distrustful of profess ionals has meant that peer support workers and peer providers are increasingly being hired in psychiatr ic sys tems . The participation of consumers , backed by mental health policy, will hopefully help the shift to a heal ing paradigm. The concept of using the spec ia l skills and knowledge ga ined from achiev ing recovery a s part of a treatment approach to help others recover is excit ing. The opportunity this presents for consumer s to shape the sys tem to more effective and empower ing mode l s of support, based on the recovery exper ience , is intriguing. T h e tens ion that will inevitably ar ise between traditional app roaches and c o n s u m e r v iews should be salutary for programs and cl ients. (Fox & Hilton, 1994, p.629) There are severa l i s sues around providing peer support within the structures of the mental health sys tem. Fo rbes and Sash idha ran (1997) note that, "...typically participatory s c h e m e s have mirrored rather than cha l lenged broader oppress ions and discr iminat ions" (p.493). Rac is t s tereotypes of "mad , bad , and dangerous ' for black people , and 'control ' in the guise of protection for w o m e n , are only two of the prob lems of diversity in menta l health. F o r b e s and Sash id ran state that " . .pressure for change has c o m e primarily from outside participatory debates and structures, from feminist and black organizat ions. A n y attempt to locate such opposit ional strategies within an undifferentiated mode l of user involvement will only blunt its opposit ional s t r eng th " (p.495). Other articles warned that c o n s u m e r participation will moderate the opposit ional force trying to protect consumers ' rights, and engage in anti-discriminatory activity (Bowl, 1996; F isher, 1993). A l though there is no guarantee that consumer/survivor-run programs will not a l so discriminate, consumer/surv ivors ' own exper ience from the s t igma of a psychiatr ic d iagnos is will hopefully sensi t ize them to other peoples ' st igmatization. G roups must be self-reflective to avoid the danger of replicating hierarchy and discrimination. 27 Emp loyment in mental health serv i ces is open ing up at all levels but there are now posit ions especia l ly des ignated for consumers . S o m e of these are consumer advoca tes , peer support workers , peer counse l lors , and ass is tant c a s e manage rs . They provide support se rv i ces , extens ion of serv ices provided by profess ionals , advocacy and resource acquisit ion, teach coping skills and problem solv ing, act a s role mode l s and engage consumer s in socia l izat ion. Consumer/surv ivors exper ience difficulties providing serv ices in convent ional mental health facilities or organizat ions (Mowbray, Moxley, J asper , & Howel l , 1997). The creation of the identities of chronic mental health patients in the psychiatric sys tem can be counterproduct ive to the p rocess of recovery; Strong res is tance to labelling and stigmatization a long with well-estab l ished identities, not based on an i l lness parad igm but on the reality of recovery, are needed to be able to work within the sys tem. There are profess ionals who bel ieve in recovery and are of great ass i s tance to c o n s u m e r providers, but often the support needed to be success fu l is not avai lable. Mowbray , Moxley , J a s p e r a n d Howel l (1997) state that c o n s u m e r providers who want to hasten their recovery and help others recover exper ience fewer difficulties in providing serv i ces that are controlled by consumer/surv ivors , but they encounter more difficulties in a c cess i ng sufficient funding. There is d i s sonance in the call for more participation of c o n s u m e r s in mental health serv ices , and s o m e professionals ' des i re for further restrictions and coerc ion with community treatment orders. This reflects the ambiguity of a sys tem that is supposed ly support ing the recovery of those with emot ional difficulties while a lso acting a s a pol ice force, enforcing socia l control. Conclusion The dominat ion of the Cartes ian-Newtonian worldview and the 'mascul in izat ion ' of thinking in s c i ence has resulted in a medica l s ys tem which treats people like mach ines needing repair and which ignores the subject ive and relational aspec ts of people 's l ives. This results in a practice of psychiatry which invalidates people 's own exper ience and individual izes prob lems that may 28 be more appropriately looked at in the context in which they ar ise. The ' sc ience ' of d iagnos is is not a s scientific as it c la ims to be with the d isc losures of how a new d iagnos is is, at t imes, arbitrarily included into the bible of mental health, the Diagnost ic and Statistical Manua l , without any substantia l base of research to support the c la im (Cap lan , 1995; Brown, 1994; Burstow; 1992). T h e b iases and prejudices of psychiatrists who d iagnose are ignored in the p rocess of the supposed ly 'objective' observat ions of pathology in behav iour which is taken out of context. A b u s e s c an and do occur when people are labelled with a psychiatr ic d iagnos is and lose their credibility and rights. Feminis ts compla in about how women ' s problems are overmedica l ized and how they are misd iagnosed in the institution of psychiatry which se rves the interests of patriarchy and capital ism (Burstow; 1992; Brown, 1994; Cap l an , 1995, Le rman , 1996; Smith, 1990). T h e p rocess of recovery is not feas ib le in a sys tem which den ies consumer/surv ivors the dignity to risk and the right to failure (Deegan , 1992). The integration of peer support serv ices into the psychiatr ic sys tem has s o m e people conce rned that the struggle against s t igma and the a b u s e s found in the sys tem will lose support. But, the inclusion of consumer/surv ivors into the mental health sys tem as member s of boards, commit tees and in peer support posit ions a lso g ives hope that their perspect ive will be l istened to. 29 CHAPTER 2 A Review Of The Literature Researching The Voices OF Consumer/Survivors If knowledge is power, then the results of research must be placed in the hands of those w e seek to empower . (Rapp, She ra , & Kisthardt, 1993 , p.733) Unfortunately, there has been very little research which has a c c e s s e d the v iews and perspect ives of those who use the psychiatric s ys tem. T h e s e people have not been cons idered important informants for research in this area. A l though e m p o w e r m e n t 1 0 is a well accepted socia l work and mental health principle, "the research in the field often fails to reflect or support it" (Rapp et al . , 1993, p.733). In fact, "the definition of problems conduc ive for b laming the victim is not only descript ive of mental health research but of much of the research in both soc ia l work and psychology" (p.728). Sympathet ic and concerned mental health profess ionals advoca te for research that instead empowers people with the label of severe mental i l lness (Chesler , 1991; Rapp , S h e r a & Kisthardt, 1993; Roge r s & Palmer-Erbs, 1994; Sw igonsk i , 1993). In their study, Calsaferr i and Jongb loed (1999) explored rehabilitation needs f rom the perspect ives of consumer/surv ivors, their famil ies or careg ivers and their c a s e managers . The study showed that "...far greater needs for se rv i ces were expressed by consumer s and significant others than by c a s e managers , indicating that c a se manage rs pay insufficient attention to what consumer s want" (p. 199). The authors focused on the need for the empowerment of consumer/surv ivors through greater control of the dec is ions made about the amount and types of serv i ces they receive. Calsaferr i and Jongb loed wrote that c o n s u m e r control "...may be difficult for s o m e profess ionals , b e cause it involves redefining what it means to be a profess ional (as cited in Vande rgang , 1996)..."; and because "...they need to listen to Empowerment is defined as the "process of gaining influence over events and outcomes of importance to an individual or group" (Foster-Fishman, Salem, Chibnall, Legler, & Yapchai, 1998, p.508). 30 what c o n s u m e r s say about their needs and lives and to va lue personal exper ience and emot ions as forms of knowledge" (p.208). The study and its f indings were used to promote change within organizat ions a s well a s with individual profess ionals , and increased the awareness of the staff about the needs of the people they serve and their rights to make dec is ions about serv ices (1999). This recent V a n c o u v e r research project val idates the importance of a c ce s s i ng the vo i ces of consumer/surv ivors and then using the information gathered to make progress ive c h a n g e s to how serv ices are del ivered. Resea r ch ing the l ived exper iences of consumer/surv ivors is acknowledged by many researchers a s a respectful way to a c c e s s their expert ise and knowledge, to explore a s much a s poss ib le a perspect ive which has been previously ignored (Chesler , 1991 ; Constant ino & Ne l son , 1995; Kau fman , 1994; R a p p , S h e r a & Kisthardt, 1993 ; R o g e r s & Pa lmer-Erbs , 1994; Sw igonsk i , 1993). N e w research initiatives inc lude c o n s u m e r s in the des ign and implementat ion of research a n d promote the ".. . incorporation of c o n s u m e r experiential knowledge a s a bas is for inquiry and understanding of mental i l lness a n d its treatment" (Kaufmann, 1994, p. 170). T h e consumer/surv ivor perspect ive may a l so bring necessa r y information which is miss ing when only profess ionals ' vo i ces are l istened to. R a p p , She ra , and Kisthardt (1993) point out that efforts at deinstitutionalization in the mental health field that rely on profess ional j udgments "have failed miserably", and that recovery and employment have had poor results f rom ".. .professionally des igned interventions (Bond & Boyer, 1991 ; Dion & Anthony, 1987); it is poss ib le if not likely that more effective alternatives could emerge from ask ing consumers " (p.730). However , there are those who s e e that the current movement to include the vo i ces of marginal ized people in the deve lopment of serv ices they use can in fact be undermining to their interests and needs unless the opportunity is taken to "...further politicize the debate , and to 31 cha l lenge the interests of institutional agenc i e s which are often inimicable to those of users " ( Forbes & Sash idha ran , 1997, p.496). They a lso point out that "...the opposit ional vo ice of the users has a lways been articulated, long before 'user involvement ' in serv i ces began to be d i s cussed . However , it is this vo ice which risks being s i lenced within current mode l s of user involvement.. ." (p.496). It is not only important to give express ion to the vo i ces of marginal ized people but a lso to ensure they are empowered by the opportunity. S o m e profess ionals in the field of psychosoc ia l rehabilitation promote empowerment be cause they have obse rved how important it is in the recovery of consumer/surv ivors ' mental health (Anthony, 1993). The Center for Psychiatr ic Rehabil itation at Bos ton University has been actively exploring how "...to increase participation by c o n s u m e r s of mental health serv i ces in research" (Rogers & Palmer-Erbs, 1994, p.7). They are ask ing consumer/surv ivors to help des ign and direct current research and are exploring how to deve lop participatory action r e s e a r c h 1 1 ( PAR ) by and for consumer/surv ivors . "It is critical that the "voice of the consumer " be acknowledged in research and evaluat ion studies. . .This approach may change the "power distribution" for consumers " (p.10). Research with Consumer/Survivor Self-Help Groups O n e participatory action research investigating self-help programs (Chamber l in , Rogers , & El l ison, 1996) w a s led by profess ional researchers from the Center for Psychiatr ic Rehabil itation at Bos ton University. They included a s the project director, Jud i Chamber l in , a consumer/surv ivor and author of the popular book, O n O u r Own ; Patient Control led Alternat ives to the Menta l Health S y s t em (1978). A c o n s u m e r research adv isory board cons ide red to be representat ive of d iverse opin ions of the self-help movemen t w a s consul ted in the des ign and plan of the inquiry; the board a lso contributed to the deve lopment of quest ions to be used in an 1 1 Participatory action research is a method which is well suited to self-help groups. It is designed and conducted by a group by themselves or in collaboration with an outside researcher(s). The goals of the research are pragmatic and aimed to facilitate changes which the group wishes to initiate (Chesler, 1991). 32 evaluat ion survey. Th is w a s a quantitative study which gathered information on demograph ics , quality of life, self-esteem and soc ia l supports of m e m b e r s as well as their opinion on the va lue they rece ived from attending the self-help programs. The study found that m e m b e r s of self-help g roups were very satisf ied with the programs; they reported an inc reased quality of life, with improvements in soc ia l support , self-esteem and self-respect. M e m b e r s were able to "...meld serv ices from traditional sources with those offered by the self-help program" (Chamber l in at al . , 1996, p.40). It w a s found that the members ' levels of communi ty and political involvement were high, contradicting a widely held stereotype about the apathy of consumer/surv ivors. In their final statement the authors stated that, "as we learn more about self-help programs and their participants, we may learn about different way s that quality of life and community tenure c an be improved" (p.41). The self-help groups a lso ga ined by having research which shows the benefits of their programs to current and potential funders. Trainor, Shephe rd , Boydel l , Left and Crawford (1997) invest igated the ou t comes of the C o n s u m e r Surv ivor Deve lopment Initiative (CSDI) , a program which funded thirty-six consumer/survivor-run organizat ions in Ontario. Th is w a s both a quantitative and qualitative study which used quest ionnaires to collect quantitative information arid focus groups to gather qualitative data . S o m e important f indings of this study were that all consumer/surv ivors , who joined a CSD I dec r ea sed their use of mental health serv ices ; especia l ly significant were reductions in inpatient b e d use , rates of hospital ization and outpatient visits. The m e m b e r s inc reased their contact, involvement a n d people skills both with other consumer/surv ivors and those in the broader community . A n d the CSD I groups were ranked a s the most helpful of all of the serv i ces they rece ived, and consumer/surv ivors a s "...significantly more helpful in deal ing with their mental health i s sues than any professional group" (Trainor et al . , 1997, p.138). 33 T h e authors ' recommendat ions for increased recognition and funding for consumer/surv ivor self-help groups reflects that they are good all ies for the a ims of these groups . The report, however , did not reflect the p resence and the vo ice of consumer/surv ivors themse l ves . The report w a s in a publication targeted for an aud ience of mental health profess ionals which would have inf luenced its des ign . T o be acknowledged a s legitimate holders of knowledge and exper ience , consumer/surv ivors need to be visible and audible in the reports of the research of the organizat ions they run. The CSD I groups represent innovat ions deve loped and run by consumer/surv ivors and dese rve the respect that is a c co rded other mental health organizat ions. S i nce i s sues of persona l a n d col lect ive empowerment are crucial in self-help groups , inquiry methods and act ions for change that explicitly empowe r participants (see earlier comment s by C a n c a i n and Armis tead ,1990 ; Gaven ta , 1988; and Rappapor t et al . ,1985) b e c o m e extremely important. (Chester, 1991 , p.764) S t-Amand and Clavette (1992) write an account of another research project studying self-help. The authors used the vo i ces of self-help m e m b e r s to tell the stories of their exper iences both with professional serv ices and within the self-help group. They rely on the power of these words , " . . .spoken out of direct exper ience , to convey important l e ssons about the need for professional humility and recognit ion of the fortitude and ingenuity that people bring to the multiple t asks of manag ing their own l ives" (p.xi). They used personal accounts "...to get a s c l ose a s they could to the point of v iew and the exper iences of people with mental health prob lems" (p.50) a s well as to conduct an in-depth exploratory study of the p rocess of mutual-aid. T h e authors set out to ana l yze the stories for what they revea led about how the participants sought help and what it meant to them. The a im of this study w a s to deve lop an understanding of "...the d iverse modes of soc ia l resourcefu lness exhibited by people with psychiatr ic problems 34 and contribute to the deve lopment of a more comprehens i ve approach to the training of profess ionals w h o are cal led upon to provide them with the help they need " (St-Amand & Clavette, 1992, p.56). Th is research aga in benefits profess ionals and the deve lopment of their serv ices , but a lso meets the needs of the self-help groups for positive reports of their "alternative" pract ices. The self-help m e m b e r s were s e e n a s the 'objects' of the study, not a s subjects involved in the research process . The authors do a sk the quest ions of how profess ionals c an be involved in the deve lopment of self-help groups without co-opting or impeding autonomy, and how to accept that professional serv ices are often not useful for self-help group members . They end by linking the rise of mutual-aid in the mental health a rea to ".. .a global soc ia l movement a imed at returning people to their rightful place in socia l organizat ions and "therapeutic" relationships.. . involving the humanizat ion of socia l relat ionships and a new ideal of just ice and equality between people , cultures and nations" (p. 140). T h e s e research approaches attempted to a c c e s s the vo ices of consumer/surv ivors but were conduc ted from the standpoint of the professional researcher . To do full justice to the viewpoint of these marginal ized groups , to truly reflect their vo ices , research should be conduc ted from a s c lose to the standpoint of consumer/surv ivors a s poss ib le and of course be of benefit to their goals . The Transformative Power of Stories Powel l (1994) edited a collection of e s s a y s and reports of research with self-help organizat ions. In one article by Rappapor t (1994), the narrative approach to research is promoted "...as a way to understand human exper ience , memory , and personal identity f rom the point of v iew of a person in a soc ia l con tex t " (p.115). Rappaport ' s thesis is that 35 the narrative approach is a "...powerful analytic and methodologica l tool.. ." (p.116) for the study of mutual help. W h e n self-help groups are v iewed a s narrative communi t ies , researchers "...avoid the professional centr ism that necessar i ly eme rges from conceptual iz ing mutual-help organizat ions a s alternative treatments...for people with problems in living" (p.116). P rofess iona l centr ism occurs when profess ionals may s e e the posit ive va lue of self-help but a lways v iew their own group as more helpful than self-help groups. Rappapor t points out that the medical-social serv ice mode l def ines these groups a s alternative treatments from the professionals ' own perspect ive of serv ice delivery and for their own purposes . A s in the previous studies rev iewed, this perspect ive leads researchers to focus on what profess ionals c an gain from the research. T h e s e studies can lead to funding and col laborat ions, based on the treatment and serv ice del ivery model , which may m a k e the groups vulnerable to take-overs by well-meaning profess ionals . Rappapor t a l so s e e s that the nature of self-help inc ludes the rejection of the status of serv ice recipient expressed by "...the adopt ion of a new ideology and a transformation of identity, or s e n s e of self, accord ing to a narrative provided by the organizat ion" (Rappaport , 1994, p.118). He points out that when self-help is s e e n as an alternative treatment serv ice , studies can yield information about the ef fect iveness of the group but they cannot capture the exper iences of the m e m b e r s or inform the researchers a s to why people and their identities were t ransformed by belonging to this mutual-help group. "Resea rch ing mutual-help a s "the stories people tell" has severa l advantages , not the least of which is to free the idea of mutual help from the st igmatizing implication that those who are involved in such organizat ions are more needy or less competent than those who are "on their own" or that the implicit s tandard for compar i son is profess ional treatment" (Rappaport , 1994, p. 121) Rappapor t obse rved that the stories told by m e m b e r s of self-help groups were very different from those told by people who only a c c e s s e d help from professional serv ices . "Typical 36 profess ional patient stories often revolve around learning to s e e one 's self as s ick and dependent on medicat ions to control behavior . . .Profess ional patients.. .see themse l ves as dependent recipients of se rv i ces who have little to offer others" (p. 122). M e m b e r s of self-help groups s e e themse l ves as givers and receivers, who have hope and a capacity for positive change within a caring and shar ing community (Rappaport , 1994). Rappapor t s e e s these groups of consumer/surv ivors as no different from other communi t ies where a change of identity and behaviour is s e e n as a change of membersh ip and lifestyle, not a s a "treatment outcome" . In this way the self-help communi ty can be seen as a normative structure in soc ia l exper ience ; it is not people receiving serv ices , it is people living l ives. Th is normative view al lows m e m b e r s to be seen a s no different from ".. .people who a lso continue to deve lop and change their individual identities in the context of soc ia l and communi ty life throughout the life span " (Rappaport , 1994, p. 124). Jo in ing a self-help community is a way to a sk the quest ion, "Who a m I?" and to reject the professional treatment story and the identity it offers for recipients of professional serv ices . Rappapor t writes that narrative studies have the advantage for self-help "...of not doing v io lence to the perspect ive of the members . . .or to the self-help ethos (R i e ssman , 1985) b e c a u s e it requires understanding the world from the point of v iew of the individual m e m b e r s and their communi ty " (p. 126). Narrat ives a lso leave the context within which people live; the place, t ime and action of exper iences and what people find meaningful about them. Rappapor t p roposes "...that self-help organizat ions can be v iewed a s a spec ia l c l ass of communi t ies in which an alternative identity is provided.. . " and that, "...a change in one ' s communi ty of membersh ip can be an important source of change in personal identity" (p.128). Rappapor t (1994) c o m m e n t s on the ideas of Schank , a cognit ive psychologist , w h o says that the telling of negative stories might actually reinforce the problems that people exper ience . W h e n people tell positive stories these b e c o m e reinforced and people s ee themse l ves in a 37 better light. He a lso " . . .suggests that untold stories can be troubling in part be cause if not exp ressed they can remain less coherent. Stor ies told only to onesel f do not benefit f rom the modification and coherence required for a listener" (Rappaport , 1994, p. 129). T h e untold stories may retain chi ldish mean ings and provide bad explanat ions for present. S chank sugges t that negat ive stories shou ld be told to a pe rson o n c e a n d never aga in , s o that the memor ies are not reinforced and are al lowed to d isappear . Membe r s of a mental health self-help group were delighted with this information a s they sa id their member s were tired of telling bad stories to profess ionals and s aw their group a s doing its best for people when new stories about deal ing with the t asks of life were being told. Rappapor t (1994) states that he bel ieves that " . . .personal reality is constructed (and therefore can be reconstructed throughout the life span) and that there is an iterative p rocess between the internal and external" (p.131); the stories incorporated from community narratives modify the persona l life stories of individuals and v ice ve rsa . T h e s e concepts val idate the importance of research ing the stories that consumer/surv ivors tell about their exper iences with psychiatric se rv i ces , self-help, and the transformation of identity; by hear ing each others ' stories they can reconstruct positive personal realities. This article inspires the use of the narrative research approach and val idates that it is appropriate for the study of member s of a self-help group. In Hol land, research w a s conduc ted at a mental hospital with both patients and profess ionals a s participants. The form of the study w a s a narrative inquiry which focused on a vocat ional rehabilitation project to provide patients with employment as staff of a boutique in the hospital . T h e researcher , T ineke A b m a (1998), found that the s tandard story that led the profess ional practice of the therapists " . . .supported the idea that psychiatr ic patients were dependent on the expert ise, care , and protection of therapists" (p.822). The result of the routines based on this story w a s pass i ve behaviour f rom the patients when what they really needed w a s to take responsibil ity for their l ives in order to recover and return to society and the work force. 38 A b m a (1998) reasoned that for a transformation of professional practice, the s tandard story "...had to b e c o m e the subject of doubt and critique" (p.822), and that the introduction of new stories which deviated from the standard would result in more critical awareness . H e found that s o m e profess ionals would not easi ly leave the standard story and o p p o s e d the proposa l . A b m a proposed to conduct a cooperat ive inquiry with those who had an interest in the project, and to engage the participants a s partners in the inquiry process , a strategy a imed at ove rcoming the participants' res istance and ensur ing their openness . The p rocess involved the shar ing of stories both by the patients and profess ionals . The des ign w a s al lowed to emerge in r esponse to these stories. T h e study was grounded in a soc ia l constructivist perspect ive which v iews the world a s constructed by people who tell stories about their ' l ived' exper ience from their own specif ic standpoint, in order to make s e n s e of what happens to them. There are standard stories which provide a base for many of the beliefs and activities in society. "The standard story is.. .so self-evident that its c laim to validity den ies the need for justification or p roo f " (p.825). A b m a bel ieved that when stories which are marginal ized, be cause they deviate f rom the standard story, are ".. . invested with powerful symbols , they can enrich the s tandard story with other exper iences and generate c h a n g e s in pract ices" (p.825). W h e n the patients told the stories of what working in the boutique meant to them, they ta lked of how it " . . . touched their whole being. They no longer were objects; they were becoming subjects" (p.827). They spoke in a 'natural ' c o m m o n language. In contrast, the therapists spoke with abstract formality and told a 'therapeutic' story which related to a functional rather than existential mean ing of exper iences . The researcher sugges ted that for the therapists "the abstract ion of exper iences is a routine solution for manag ing their own feel ings; it protects them from the suffering exper ienced by their patients" (p.827). The d istance kept by the profess ionals was " . . .exper ienced by the patients as a denial of their life stories and existential 39 quest ions" (p.827). The power dif ferences led to a 'narrative imbalance ' in which the patients' stories could not deve lop. "Their uncompleted stories were not heard and , hence , were not val idated" (Abma , 1998, p.828). O n e theme found in the analys is of the therapists ' stories w a s that "...they felt bound by the organizat ional context in which they worked. . .one dominated by large numbers and a lack of t ime" (Abma , 1998, p.830). B e c a u s e of these d e m a n d s of the organizat ion "...they fell back o n the routine solut ions supported by the standard story of the therapist as expert" (p.830). W h e n the therapists recognized that it w a s their practice which determined the dependent behaviour of the patients, the standard story w a s s e e n a s inadequate. Their feel ings of frustration and disquiet led them to realize that a new story w a s needed . F rom hearing the stories of the patients, the therapists s aw themse l ves differently; the stories acted like mirrors and they did not like the d isc repancy between what they thought their practice w a s a n d how it w a s reflected back to them. T h e therapists then opened to the patients' stories and "...this led to an adjustment of professional practice be cause therapists redefined their relationship with patients a s well a s their own identity and role" (Abma, 1998, p.835). The transformation al lowed the therapists to care and watch out for their patients' health while a lso encourag ing them to take responsibil ity and m a k e their own dec is ions. This study illustrates that through cooperat ive inquiry, shar ing stories, and inviting mutual reaction, stories c an be changed . A n d when stories change , people change , resulting, in this c a s e , in transformations of profess ional practice. A b m a (1998) reflects that " . . .development a n d change in practice do not c o m e from the rational application of formal abstract knowledge and information but rather from new experiences" (p.836). Detai led narrative accounts c an give people these new exper iences by the "transport of knowledge from the setting of another to a context of their own" and then through the incorporation of this knowledge by its mean ing and validity to their own life (p.836). 40 T h e use of a narrative style of writing in the research report inc reases its impact. Its importance is that it relays a method of bridging the exper i ences of two very d iverse groups who have been polar ized in their roles and behav iour towards one another. The article inspired my research project with the possibil it ies of transformation from the use of narrative research and val idated the use of stories a s an effective way to transmit the exper iences and the mean ings behind them for people who use or have used the psychiatr ic sys tem. Research on Empowerment and the Recovery Vision Wi l son (1996) advoca tes for the need for further research on the role of empowerment in consumer/surv ivors ' mental health, and "...the interplay between personal and communi ty involvement, s u c h as factors that contribute to success fu l c o n s u m e r initiatives" (p.82). The involvement of consumer/surv ivors in self-help and consumer/survivor-run organizat ions has been identified a s contributing to their empowerment a s well a s significantly reducing their use of professional mental health serv i ces (Anthony, 1993; Rappaport , 1994; Trainor et al . , 1997). Foster-F ishman, S a l e m , Chibnal l , Legler, and Y a p c a i (1998) report on a c a s e study des igned to explore the assumpt ions of empowerment theory. The authors d i s cuss the importance of a col laborat ive or joint insider-outsider approach for research with community groups. They argue that "...inquiries directed solely f rom the outside cannot reveal the insider 's l ives" (p.532). They use a phenomenolog ica l s tance for their inquiry and quest ioned the accuracy of the representation when insiders are not inc luded in the writing of a report. . At the Nat ional Summit of Menta l Health C o n s u m e r s and Surv ivors ( N S M H S C ) (1999), consumer/surv ivor participants d i s cus sed the need for more research on peer-run alternatives; to generate funding, to document what works for w h o m and at what cost, a s well a s to gather knowledge to improve existing programs and to deve lop new ones . " Resea r ch can help promote peer-run alternatives a s a promising way to reach more people and better support their 41 recovery and respond to their soc ia l needs " (p.28). The facilitator, a university researcher , found from exper ience that scientific methods of research are often at odds with the va lues and capabil it ies of peer-run alternatives. The leader of the workshop noted that there are many problems with the involvement of consumer/surv ivors in research projects; f rom turf wars about power and control, to conflicts over interpretation and the use of f indings, to inadequate resources , pay, and technica l ass i s tance . All of these prob lems ". . .undermine trust, cooperat ion and susta ined commitment. . .There is a danger that c o n s u m e r involvement in research is creat ing st igma, exploitation, and token ism e ven as researchers attempt to be inclusive" (N i SMHCS , p.29). T h e s e d i l emmas require researchers to be vigilant and self-reflexive about their motivat ions and attitudes towards consumer/surv ivors and to work in col laboration with them as much as poss ib le . Consumer/surv ivors need a c c e s s to training and information to be equ ipped to be involved in a meaningful way, The goa ls of research and the use of the f indings must a lso benefit the a ims of consumer/surv ivors and their groups . A s much a s poss ib le research could be conduc ted by and for consumer/surv ivors with methods such as participatory action research and with the provis ion of adequate funding and support. Anthony (1993) writes that ".. .recovery is a s imple yet powerful v is ion" (p. 16). "It s p e a k s to the heretofore unment ioned and perhaps heretical belief that any person with seve re mental i l lness c an grow beyond the limits imposed by his or her i l lness" (p.22). He talks about deve lop ing a recovery-oriented mental health sys tem but admits that there has been no research about the p rocess of recovery, He r e commends that both quantitative and qualitative research be conducted , but sugges ts that qualitative research is appropriate for understanding "...the exper ience of recovery from mental i l lness f rom those who are exper ienc ing it themse l ves " (p.20). 42 Consumer/Survivors Writing in Their Own 'Voice' Over the last thirty years , a longs ide the deve lopment of the consumer/surv ivor soc ia l movement , many articulate consumer/surv ivors have publ ished books and articles express ing their v iews and telling the stories of their exper iences . Irit Shimrat (1997) told her own story and the stories of leaders of the 'mad m o v e m e n t ' 1 2 in C a n a d a . T h e s e leaders have many different v iewpoints about what "mental i l lness" is but are in agreement about the inhumanity of many of the pract ices of psychiatry s u c h a s e lect roshock treatment and forcible drugging. T h e contributors have been advoca tes who have fought many battles in defence of their own and others' rights, a lmost all of them consumer/surv ivors themse lves ; the except ions are sympathet ic profess ionals dedicated to support ing consumer/surv ivors . They all s e e that there are better ways to help people recover than is provided by the mental health sys tem. O n e of these leaders, G i se l a Sartori, is a founder of the S e c o n d Opinion Society ( SOS ) of Whi tehorse , Y u k o n . Her group w a s a s k e d , by the then Minister of Health, J o y ce Hayden , to survey the needs of the psychiatric surv ivors in her a rea . Hayden had c o m m e n t e d in reading a proposa l put forth by the local C a n a d i a n Mental Health Assoc ia t ion , "Where are the people here? " (Shimrat, 1997, p.126). Hayden found that the plans for a half-way house were too medical ly oriented and controll ing, with no input f rom the people it w a s meant to serve . The federal health promotion department cal led the a s s e s s m e n t , "...one of the best participatory research projects that has ever been done in C a n a d a " (p. 127). Sartori strongly sugges ts other groups do similar projects. S h e conc luded that having research behind proposa ls a lmost guarantees they will be funded (Shimrat, 1997). Shimrat s a y s that the 'mad movement ' activists "...have started self-help, political and creat ive groups that have m a d e a difference" (p. 152). S h e ends by say ing that "I and my crazy fr iends have a great dea l to t each people about alternatives, not only to psychiatry but to other The 'mad movement' is a social movement of consumer/survivors who have banded together in solidarity against the abuses and loss of human rights for those who are treated in the psychiatric system. 43 ways in which people are oppressed. . .Sure ly we c an create a thousand things that really work, not for settling people and making them normal , but for relieving their pain and freeing them to think, feel and do" (pp. 169-170). Another author, activist, and teacher is Patricia D e e g a n (1996), a c o n s u m e r who deve loped a 'survivor miss ion ' in res is tance to the pronouncement by a psychiatrist that the best s h e could hope for w a s to take her medicat ions, avoid stress and cope . Her miss ion w a s "...to get a powerful degree and have enough credentials to run a heal ing place m y s e l f (p.96). S h e slowly recovered , read tons of books , and eventual ly rece ived her doctorate in clinical psychology. S h e began in the traditional role of psychologist but left it when she d i sc losed that s h e was a consumer/surv ivor and began working with and for her 'peers ' . S h e jo ined a branch of the L 'Arche Communi ty , one of 125 around the world founded by the Canad i an J e a n Vanier . Here people learn to live with those with disabilities, shar ing their life with them. D e e g a n quotes Vanier , " Peop le c o m e to I'Arche to help wounded people and stay because they d iscover that they, in fact, are wounded too" (Deegan & Smoyak , 1996, p.45). D e e g a n is currently the director of training at the National Empowerment Cent re , a completely consumer-run and control led national technical a ss i s t ance center, with many innovative trainings and resources , cou rses such as Hear ing V o i c e s That A re Distress ing: A S imulated Training Exper ience and Self-help Strategies. At a conference , D e e g a n (1996) add res sed students in the mental health field advis ing them on how to approach people with psychiatric disabilit ies. S h e told them that "people who feel power less a lso feel that what they say d o e s not matter. Tak ing the t ime to listen to people and help them find their own unique vo ice is important" (p.95). S h e a lso told them how ".. .people who are psychiatrically labelled are organizing. . .developing a collective vo ice and are fighting to o ve r come oppress ion , poverty, discrimination, and st igma. . .We are a lso beginning to define our 44 exper iences in our own terms and to educate profess ionals about our exper ience and what helps" (p.97). D e e g a n & S m o y a k (1996) present a story D e e g a n tells to the teenager she w a s when she w a s 'psychiatr ized' , and that s h e w ished she could tell all t eenagers who had just been labeled with the major mental i l lness of sch izophren ia . Th is narrative style is very mov ing and really exempl i f ies the difficulties faced by a young psychiatr ic patient. D e e g a n desc r ibes how people treated her a s a sch izophrenic . It is as if the whole world has put on g l a sses that blind them to the person you are and leaves them see ing you a s an i l lness. It s e e m s that everything you do gets interpreted through the lenses of these warped g lasses . If you don't laugh, that is worr i some, and if you laugh too much , that is a lso worr isome. . .The range of behaviors and feel ings you are al lowed has been dramatical ly narrowed as a result of the blinders that those around you have put on . (p.41) D e e g a n a l so talks about how recovery is not just the recovery from mental i l lness but a lso f rom the effects of being label led mentally ill. "I bel ieve many of us emerge from mental institutions with full-blown post-traumatic s t ress d isorders that are a direct result of the t rauma and a b u s e we may have exper ienced or wi tnessed in mental institutions or in community-based programs" (p.43). The following are her final words to herself as a teenager . Y o u have the wondrously terrifying task of becoming who you are cal led to be. . .You are not cal led to be a mental i l lness. . .You were born into this world to grow and it is poss ib le to grow into a whole healthy person who a lso has a psychiatr ic disability...Your life and d reams may have been shattered-but from s u c h ruins you can build a life full of va lue and purpose" (p.44). T h e s e are stories told by people who have recovered and are whole vital people , in spite of a label or cont inued symptoms. They are the inspiration that others need to bel ieve that there is 4 5 hope for all who are given psychiatr ic d i agnoses to grow beyond their labels and be all that they wish they could be. It is important for these stories and v iews to be resea rched and publ ished to promote understanding of people 's psychiatric exper iences and the recovery p rocess , a s well a s to work against the harm of st igmatization. Conclusion T h e perspect ive of mental health profess ionals is practically the only one that is reported in texts, the med ia and throughout the genera l public. The alternative perspect ive of consumer/surv ivors is only just beginning to be heard , and is mostly l istened to in order to improve already existing serv ices or to reduce the cos ts involved. There is a whole body of knowledge and expert ise that is being m issed when the consumer/surv ivor perspect ive is min imized and only parts incorporated. Within self-help groups , consumer/surv ivors are deve lop ing the conf idence in their own expert ise and wish to deve lop programs which they know will help their member s to recover. Th is review of articles points to the need for research which is conduc ted from the standpoint of consumer/surv ivors , ideally with participatory action research by and for consumer/surv ivors, or with a s much participation and col laboration a s is poss ib le . A c c e s s i n g the vo i ces of consumer/surv ivors who have exper ienced recovery is a lso important for understanding the recovery p rocess to aid the deve lopment of recovery-oriented serv ices . Self-help groups are in need of research to back their proposa ls for funding and to deve lop programs which address the i s sues of their members . If these consumer/survivor-run groups are to ach ieve the potential they have to be instrumental in the recovery of mental health for their members , they will need the support of all ies, research to further their deve lopment and the provision of an adequate funding base . 46 CHAPTER 3 Theoretical Framework: Stories Researchers Tell Themselves Soc ia l scientists have in the past fol lowed the parad igm of the traditional scientific method to gain legitimacy for their work. Fortunately, in part due to the feminist movement and the fol lowers of critical theories who focused on marginal ized groups , there has been a shift away from approach ing the study of humans in society as if they were parts of a mach ine . There has been an acknowledgment that too often knowledge gathered by supposed ly neutral, objective researchers has in fact been used to further oppress certain groups (Denzin, 1994). O n e such group is c o m p o s e d of people who end up in the psychiatr ic s ys tem. Much of the research on this population is from the perspect ive of scientific medic ine which invest igates the great d istress of these people a s a way to learn how to better m a n a g e or control s ymptoms and behaviour. Most of the recent research looks at the interaction of medicat ions and the physical structures of the brain, with s o m e research into the dif ferences in the s ize of particular a reas of the brain thought to represent the source of prob lems or the result of brain defects. S o m e sociologists have examined how psychiatry has created a legitimate medica l profess ion from the medical izat ion of people 's d istress (Pilgrim & Rogers , 1993). Soc io logists and soc ia l workers have looked into how people have been opp ressed by the structures deve loped to manage this "psychiatr ized" population. Theor ies have been deve loped by feminists to address the i ssue of the oppress ion of w o m e n in our society and the uncover ing of the soc ia l structures which perpetuate this oppress ion . F rom these, feminist standpoint theory deve loped to promote inquiry from the perspect ive of w o m e n , emphas iz ing how their v iews on society are necessar i ly more inclusive and broader than the male perspect ive (Smith, 1990). The theory which most informs this current research is standpoint theory. Th is theory ar ises from a critical paradigm and permits the investigation of the socia l structures that are e m b e d d e d in the ordinary day-to-day l ives of marginal ized groups using the knowledge they have ga ined 47 f rom their standpoint. Feminist theory e m p h a s i z e s that the vo i ces of opp ressed groups be a c c e s s e d and given express ion . Other theories are incorporated when they are pertinent to this research . Phenomeno logy , an interpretative theory, looks for the meaning of individuals ' lived exper iences situated in a particular t ime and place. Poststructural theory reveals multiple, social ly-constructed realities and permits the deconstruct ion of taken-for-granted d i scourses . Co-Cultural theory u ses muted group theory and feminist standpoint theory a s a base for its study in communica t ion . Other theor ies which inform this researcher are those deal ing with sys tems , particularly living sys tems a s they apply to the soc ia l s c i ences . Feminist Standpoint Theory: We can see more than you can! Swigonsk i (1993) states that feminist standpoint theory ". . .provides the tools to construct soc ia l work research that honors the profess ion 's primary practice imperative" (p.171). The primary practice imperative being that of beginning from where the client is. O rbe (1998) bel ieves that "standpoint refers to a specif ic societal posit ion, the result of one ' s field of exper ience , which se rves a s a subject ive vantage point from which pe rsons interacts with themse l ves and the world" ( p.26). In socia l s c i ence research , people 's standpoint is their soc ia l position as revealed by its location in socia l structures and informed by what relationship this location has to their lived exper ience. This standpoint reflects how a person 's gender , culture, ethnicity, c l ass , ability and sexua l orientation affect their everyday life (Swigonski , 1993). Muted group theory w a s deve loped by anthropologists to descr ibe the phenomenon of what happens when a group is margina l ized; their v iews are not heard, and their perspect ive is in fact rendered invisible (Orbe, 1998). Foucault (In Riger, 1992) a lso co ined the term 'subjugated knowledges ' for the s i lenced perspect ives of these people on the margins of society. With their control of communica t ion , only the v iews of the dominant culture are heard as legitimate. 48 R e s e a r c h is general ly conduc ted from the perspect ive of the dominant culture which controls the creation and legitimization of soc ia l structures. Soc ia l work research often f o cuses on individual differences which can lead to blaming the vict ims of soc ia l inequities. Th is type of research can then be the base for the creation of policies a imed at personal change rather than policies which s eek to change the underlying socia l structures. The result is the ma intenance of the status quo . R e s e a r c h from the standpoint of marginal ized groups has as its a im to move the groups out of the margins and to p lace their daily exper iences in the centre of the focus of research . " Re sea r ch from the standpoint perspect ive attempts to understand how the soc ia l structure contributes to the problems found in day-to-day life and s e e k s the emanc ipatory transformation of the soc ia l structure" (Swigonski , 1993, p. 173) It is a theory which promotes action research with the goal to liberate marginal ized people from oppress ion . O n e of the tenets of standpoint theory is the significant involvement of marginal ized people , such a s consumer/surv ivors , in the p rocess of conduct ing research in order to further their empowerment , to ensure their v iews are respected , and to guard against errors. The benefit of research from the standpoint of marginal ized groups is that the members of the groups have a different perception of reality a s a result of the oppress ion they exper ience . Their alternate worldview is necessa ry to obtain a more inclusive and complete understanding of society. Not only do the marginal ized have their own alternate v iew of reality, they have an understanding of the reality a s exper ienced by the m e m b e r s of the dominant group. "To survive, they must have knowledge, awareness , and sensitivity of both the dominant group's v iew of society and their own-the potential for "double v is ion" or c o n s c i o u s n e s s - a n d thus the potential for a more complete v iew of soc ia l reality" (Swigonski , 1993, p. 173). In contrast to the notion of "double v is ion" is the notion that priviledge is invisible to those who have it; the privi ledged have no reason to quest ion the rights they p o s s e s s and s o a s s u m e them as 49 naturally occurr ing phenomena . They do not need to v iew the world from the perspect ive of less advantaged groups. The standpoint approach to research has the potential to expand people 's v iews of reality and to avoid the dangers of unwittingly victimizing and oppress ing the .participants. Dorothy Smith: A diva of inquiry. Dorothy Smith is a sociologist who participated in the deve lopment of feminist standpoint theory. Smith and others in the emerg ing women ' s movement s a w that there w a s "...a standpoint f rom which a w o m a n might know the world very differently f rom the way knowledge had already c la imed it...We b e c a m e aware of modes of speak ing , writing, and thinking which took our powers of express ion away from us even a s we used them" (Smith, 1990, p.199). Her a im w a s "...to work from outside the conceptua l and methodologica l procedures that objectify knowing a s knowledge.. . " (p.200). Smith , in her studies of the writings of Marx, found "...a method of reasoning and investigation that would connect up concepts and theories with the actualities of people 's lives...", which would a l so allow the study and the express ion of the soc ia l p rocesses found within organizat ions and relations (p.200). "...It is the relations coordinat ing peoples ' actual s e q u e n c e s of action that must be central to our investigation" (p.201). Standpoint theory is capab le of exploring and mapping actual organizat ion and relations that a re invisible but active in the everyday/everynight sites where people take up res is tance and struggle, capab le of producing a knowledge that extends and expands their and our g rasp of how things are put together and hence their and our ability to organ ize and act effectively. (Smith, 1987, p.96) Smith herself has been d i agnosed and hospita l ized. A s a sociologist s h e has ana lyzed the way a person , particularly a w o m a n , rece ives a psychiatr ic d iagnos is and is subsequent ly treated. S h e a l so has conduc ted inquiries into how written texts are used in psychiatry to create and maintain this new identity. S h e ".. .evaluates a text by its ability to reveal the invisible 50 structures of oppress ion in women ' s worlds" (Denzin, 1994, p.509). S o m e of these written texts are the mental health statistics, d iagnost ic manua ls , and psychiatric and soc ia l work clinical c a s e notes. For example , in c a s e notes, "...typical construct ions organize the account around the individual, obliterating the local contexts of her life and in particular the local contexts of the production of the account" (Smith, 1990, p.93). W h o m a k e s texts is a lso pertinent; the c loser the person to the actual lived exper ience of the client, the less likely they will have authority to create texts a s they wish. In mental health, nurses and soc ia l workers who do have direct contact with patients' exper iences are subordinate to psychiatrists. They will a lso be constra ined by the form of recording which is required. Wha t d o e s not fit into the organizat ional form of reporting c a s e s is left out. "Accounts are s h a p e d to fit the textual realities cal led for within the relations and apparatus of ruling" (Smith & Dav id , 1975, p. 103). Smith notes that once the information is deve loped , the descr ipt ions, theories and pract ices in psychiatry move into use with popular med ia and the training of profess ionals , thus creating a genera l public knowledge about psychiatry. How people see and m a k e descr ipt ions of their own and others' exper iences a s a matter for psychiatric care is determined by this knowledge. "To be able to m a k e such a description is to know how to make what I feel or you feel or she is doing, into a matter which is psychiatrically act ionable. The reality of mental i l lness is a recyc led reality" (p.102). Smith u ses standpoint theory in institutional ethnography to inquire into how things work and are actually put together. Th is method begins its study in actual situations and then explores the socia l relations that organize it. It is an inquiry into how institutional pract ices penetrate and organize the exper iences of individuals (Smith, 1987). Institutional ethnography could be the method used to extend this current research and study fully the oppress ion exper ienced by people within the institution of psychiatry in order to uncover the relations and "apparatus of 51 ruling" e m b e d d e d in its structures. Included in the study would be the exper i ences of mental health workers and profess ionals a s well a s of those they provide serv ices for. Standpoint theory, as a base for soc ia l work research , honors the profess ion 's commitment to the empowerment and socia l transformation of cl ients. The consc iousness-ra is ing and critical thinking componen ts of this type of research can be emancipatory for both the researcher and the subjects. (Swigonski , 1993, p. 181) The disabling of ability- In d i scuss ing disabilities, a feminist sociologist, Wende l l (1996), writes that "...defining disability and identifying individuals as d isabled are a lso socia l pract ices that involve an unequal a c c e s s to power and have major economic , soc ia l , and psychologica l c o n s e q u e n c e s in s o m e people 's l ives" (p.23). S h e a d d s that one must not a s s u m e that people with disabilities share the s a m e perspect ive or even have their disability be the most important aspec t of their life. S h e poses that the medica l mode l of disability tends to universal ize the exper iences of those suffering under the s a m e category of d i sease or disability, while d isregarding the socia l , political and economic factors that determine how disabl ing their situation actually is. A person with a psychiatr ic d iagnos is from a high soc io-economic level will have different exper iences from one who must subsist on a disability pens ion. Finally, s h e says that people with disabilities have gathered a significant body of knowledge with a different standpoint from those without disabilit ies, and that this knowledge, "...which has been ignored and repressed in non-disabled culture, should be further deve loped and articulated" (p.73). Poststructuralists say, "How dare they tell the truth!" Standpoint epistemologies are criticized because the research from the standpoint of a marginal ized group is sa id to g loss over the dif ferences a m o n g the people in that group (Allen & Baber , 1992). Poststructural theory has a s one of its tenets that there are no absolute truths or realities, only relativism; only situated and relative knowledges ga ined from being in a particular situation at a certain time and place. A s Hawkesworth (as cited in O l e son , 1994), a political 52 scientist fears, "in a world of radical inequality, relativist resignation enforces the status quo" (p. 164). This relativism m e a n s that there is no c o m m o n ground from which to articulate political act ion for change when there are supposed ly no real c o m m o n i ssues , only situated knowledges a s a bas is to work from and deve lop col laborat ive act ion. A n d so the chal lenge for ".. .standpoint epistemology is to identify the commona l t i es of subjugated exper ience a m o n g different groups...without losing sight of their diversity" (Riger, 1992, p.734). "Smith (1992) desc r ibes standpoint theory not as a 'totalizing theory' but a s 'a method of inquiry, a lways ongoing.. .relevant to the politics and pract ices of progress ive struggle' (p .8 ) " (Orbe, 1998, p.26). Riger (1992) writes t ha t " one goal of feminist constructionist sc i ence is 'disrupting and displac ing dominant (oppressive) knowledges ' in part by articulating the va lues supported by alternate concept ions of reality (Gavey , 1989, p.462)" (In Riger, 1992, p.735). This goa l definitely fits a standpoint epistemology. It a lso supports the work of this current research to articulate the va lues arising from the reality of the l ived exper ience of those w h o have received psychiatric d iagnoses . Deconstruction: The stripping of the veils of illusion. O n e of the ideas from postructural ism that is useful in disrupting dominant knowledge is its method of deconstruct ion. "Deconstruct ion can be def ined a s an analytic strategy that e x p o s e s , in a systemat ic way, multiple ways a text c an be interpreted... Deconstruct ion peels away the layers of ideological obscurat ion, expos ing the conflict that has been supp re s sed ; the deva lued "other" is m a d e visible" (Martin, 1990, p.340) It is the s i lences, gaps , contradict ions, disjunctions, and disruptions which reveal ideology at work. D ichotomies are often cand idates for deconstruct ion; they are mostly based on fa lse distinctions, where what appears to be mutually exc lus ive oppos i tes are in fact inextricable intertwined. 53 Poststructural ists state that there are multiple realities which are social ly constructed and it is their power that dominant groups use to construct and define what is and what is not knowledge. This power is held through the c o m m a n d of l anguage and the control of communica t ion . The soc ia l construct ion of dominant d i scourses determine what are and are not soc ia l norms and standards . T h e s e dominant d i scourses are often c o m p o s e d of taken-for-granted assumpt ions and beliefs which are not quest ioned. In the p rocess of deconstruct ion a critical perspect ive is used to examine d i scourses in order to s h o w how other interpretations c an be made . A dominant d i scourse c an be>deconstructed to reveal , in one poss ib le interpretation, how it funct ions to maintain the status and power of the dominant culture. A poststructural analys is of psychiatry can reveal a dominant d i scourse which justifies, backed by legislation, the right of a psychiatrist to take away another 's f r eedom and lock them away, to enforce medicat ion and other invasive physica l treatments. The dominant d i scourse can a lso be used to determine what behaviour is pathological and in need of treatment and which is "normal ' ; which person rece ives a psychiatr ic d iagnos is and who d o e s not. The accep ted d iscourse promotes psychiatr ists as car ing and compass iona te at the s a m e time it e m p h a s i z e s their need to control and manage people who may be ' dangerous ' to themse lves or others. It legitimizes their use of physica l treatments without the consent of those who are suffering s ince they do not have insight into their i l lness. It appears reasonab le and quite appropriate to descr ibe their work in that way. But many argue that the deconstruct ion of psychiatry reveals hidden agendas . O n e a g e n d a is to use physical treatments to promote psychiatry a s a legitimate scientific medica l profess ion with a high status and salary, a s well a s to increase profits for the pharmaceut ica l industry. Another a g e n d a is to m a n a g e and control people who are d iscarded from society, while appear ing to provide medica l ca re for people who are sa id to have a d i sease of the brain (Cowan , 1996; Le rman , 1996; Pilgrim & Rogers , 1993). 54 Feminists Teach How 'the Other' is Constructed Feminist theorists have deve loped the concept of 'the Other ' which can be used as another way of understanding the st igma exper ienced by marginal ized people . W h e n people are made 'the Other" they are grouped together a s if they were objects rather than subjects who could be identified with. In this case , 'the Other" a lso b e c o m e symbo l s of someth ing to be rejected, feared and projected onto. " ' Every vers ion of an "other"...is a lso the construct ion of a se l f ( J ames Clifford, 1986, p.23). A n d I add , every vers ion of a self must be a construct ion of the other" (Gergan, 1997, p.205). One ' s identity is determined by there being an 'Other'. "The exploitations endured today are protected/projected onto Others of var ied colors , c l a s ses , sexual it ies, and bodies" (Fine, 1994, p.72). Work ing the hyphen of Self-Other (e.g. dominant-oppressed) is working with the marginal ized and exploited, studying what is and is not in between Self and Other, reveal ing how "Othering" occurs and how we ourse lves contribute to it. It is a rgued that the dominant d iscourse or master narratives maintain soc ia l order while hiding the privi ledge of researcher/writers. In many types of socia l research , "...texts that sought cohe rence of Master Narrat ives needed , and so created, Others. The c lean e d g e s of those narratives were secured by the frayed borders of the Other" (Fine, 1990, p.73). The feminist Wende l l (1996) writes that the socia l construct ion of disabilities is due to "the failure or unwil l ingness to create ability a m o n g people who do not fit the physica l and mental profile of 'paradigm' cit izens" (p.41). Wende l l a l so points out that cultural stereotyping and the lack of cultural representation in society a lso contribute to disability. The lack of realistic cultural representat ions of exper iences of disability not only contributes to the "Otherness" of people with disabilit ies by encourag ing the assumpt ion that their l ives are inconce ivab le to non-disabled people but a lso inc reases non-disabled 55 people 's fear of disability by suppress ing knowledge of how people live with disabilities. (Wendel l , 1996, p.43) E v e n when society recognizes d isabled heroes , people who ach ieve s o m e grea tness or f ame regardless of their s ymptoms or hand icaps and because of their advantages and supports , it only reduces the "Otherness ' for a few people with disabilit ies. Meanwhi le it inc reases the "Otherness ' for those who do not have s a m e supports and advantages a s these 'heros' , a s well a s sets up ideals of ach ievement that most d isabled people cannot meet (1996). Soc ia l research with people who use the psychiatr ic sys tem may not be of benefit to those who are studied. In fact, a s with research with other marginal ized groups , it . . .constructs, legitimates, and d is tances Others, banishing them to the margins of the culture. Some t imes these texts are used to deprive T h e m of serv ices ; a lways to rob T h e m of whole comp lex humanity. . .These Others are represented a s unworthy, dangerous , and immoral , or a s pitiable, v ict imized, and d a m a g e d . (Fine, 1994, p.74) O n e way for researchers to counter this Other ing, to create res istance, is to "...construct texts collaboratively, self-consciously examining our relations with/for/despite those who have been conta ined a s Others.. ." (Fine, 1994, p.74). Instead of getting to know or give vo ice to Others, researchers must listen to "...those Othered as constructors and agents of knowledge" (p.75). There are activist researchers struggling to deve lop "...qualitative research that is des igned against Othering, for soc ia l just ice, and pivoting identities of Self and Other at the hyphen" (p.81). It is hoped that this current research fol lows their lead. Co-cultural Theory Communicates Co-cultural is a term used to avoid negative connotat ions such a s minority or subculture and to recognize the diversity of cultures that exist through society. Co-cultural communica t ion theory u ses muted group and standpoint theory to provide a f ramework for researching the " . . .communicat ive lived exper iences of co-cultural group members " (Orbe, 1998, p.10). This 56 theory inc ludes the following five premises : (1), the hierarchy in society privi ledges speci f ic groups ; (2), dominant group member s "...create and maintain communica t ion sys tems that reflect, reinforce, and promote their field of exper iences " (p.11); (3), dominant communica t ion s ys t ems block the deve lopment of those w h o s e lived exper iences are not reflected in these dominant structures; (4), co-cultural g roups have d iverse exper iences but they are similarly marginal ized within the dominant structures; and (5), "to confront oppress i ve dominant structures and ach ieve any measu re of ' success ' , co-cultural group m e m b e r s adopt certain communica t i ve behav iors when functioning within the conf ines of public communica t i ve structures" (Orbe, 1998, p.11). T h e following are s o m e of the 'subordinate ' communica t ion strategies used by marginal ized co-cultural groups: ' tomming ' is conforming to stereotypical expectat ions of the dominant group; "pass ing" is behav ing as if a m e m b e r of a dominant group; "shuck ing ' is adopt ing stereotypical behav iours while cognitively rejecting the mean ings assoc ia ted with them in order to accompl i sh a goa l ; and "d issembl ing ' is conforming to stereotypes which the group e m b r a c e s as their own, where they "...create an ingroup mean ing opposit ional to dominant group c o d e s " (p.33). A n examp le of the communica t ion practice of "shuck ing ' a m o n g consumer/surv ivors , is cal led "shuffl ing'. W h e n hospita l ized, people adopt stereotypical 'menta l patient' postures and movements s u c h a s 'shuff l ing' , maintaining a low profile while appear ing to be well medica ted in order to be re leased as soon a s possible. The co-cultural perspect ive " . . .s imultaneously unites and differentiates marginal ized group exper iences without essent i a l i z ing 1 3 t hem" (p. 12). The oppress i ve pract ices of s ex i sm , rac ism, heterosex ism, ab le ism and c l a ss i sm at the levels of the personal , soc ia l , organizat ional and institutional are recognized a s similar, at the s a m e t ime a s acknowledging the different ways in Essentialism is the view that facts about the nature of the world are essentially there, they exist independently of us and we can come to know them as they are through observation and objective rational thinking (Schwandt, 1994). 57 which they are manifested in the daily l ives of co-cultural group members . Th is perspect ive a lso recogn izes the diversity of exper iences within groups (Orbe, 1998). D e e g a n (1992) identifies 'menta l ism' a s the oppress i ve practice which m a k e consumer/surv ivors into s e c o n d c lass cit izens. Menta l ism is the assumpt ion that people who are g iven psychiatric d i agnoses : "are dangerous , unpredictable and to be feared.. .are less than human and more like chi ldren than adults.. .are fundamental ly different f rom other people. . .do not know what they need" ; say crazy things that c an be ignored; need others to make their cho i ces ; " . . .should not take risks and should be protected from failures..."; need others to dec ide what is in their best interests; " . . .should strive to be normal. . .and that they are d isab led people rather than people with disabilit ies" (p. 14). Co-cultural theory explores the way co-cultural g roups communica te within the structures of dominant society; what tactics they use to get a long in a "network of a l ready estab l ished forces and representat ions" (p. 14). Through discovery-oriented phenomenolog ica l methods twenty-five different co-cultural communica t i ve pract ices have been identified. O n e of these pract ices is cal led 'strategic distancing' , which is def ined a s avoiding assoc ia t ion with co-cultural group m e m b e r s in order to promote one ' s distinct individuality. The practice of ' embrac ing stereotypes ' changes what were from the dominant perspect ive negative stereotypes into a posit ive aspec t of the co-cultural self-concept (1998). O n e example is G a y Pr ide Day, where dress ing up and participating in a parade is a joyful celebrat ion of the diversity of sexua l orientation. V a n M a n e n (In Orbe , 1998) writes that the researcher works to " . . .become a med ium for the vo ice of their co-researchers without necessar i ly manipulat ing, altering, or reshaping their life exper iences " (Orbe, 1998, p.13). T h e term "co-researchers ' is used to promote the respect for the un iqueness of the human be ings involved in the study. It is important in this p rocess that the co-researchers ' expert ise in their own life exper iences is acknowledged and respected . The 58 researcher is a lso cal led "...to acknowledge the ways in which they are posit ioned within the d i scourse that they are seek ing to understand" (p.36). A s there is no such thing a s an objective researcher , their assumpt ions need be clearly stated. Living Systems Theory. 'The Web of Life' Traditional sc ience , with its belief that the world is mechan ica l and can be perce ived objectively and control led externally, is not able to expla in for biologists the self-renewing p roces se s of life (Macy, 1998). T h e s e life-scientists have m o v e d away from looking at the bas i c building blocks of life to looking at the who les and the p roces se s instead of the parts and subs tances . This movement represents a paradigm shift from one that is mechan is t i c and reductionist to one that is holistic or ecologica l . This holistic perspect ive is cal led ' sys temic ' and the implications for a way of thinking, "systemic thinking' (Capra , 1996). S y s t e m s thinking is being appl ied in many of the scientific discipl ines including the soc ia l s c i ences . The 'web of life' is c o m p o s e d of communi t ies and the networks which link them together. Its web-like form affirms the ancient v iew of the in terdependence of all p h e n o m e n a . Instead of a hierarchy, with rule coming from above , these s ys t ems are networks nesting within other networks and order tends to arise from bottom up (Capra , 1996; Macy , 1998). Living sys tems can only be understood in context of the larger whole . " S ys tems thinking is "contextual" thinking...we can a lso say that all s y s t ems thinking is env i ronmenta l thinking" (Capra , 1996, p.37). S y s t e m s thinking is a lways p rocess thinking a s every structure in s ys t ems sc i ence is seen a s the manifestation of underlying p rocesses . Genera l s ys tems theory, cybernet ics and information theory, are conce rned with the logic of organizat ion and communica t ion . T h o s e interested in soc ia l sc ience , such a s Gregory Ba teson , s a w the application of s y s t ems theory to the discipl ines of anthropology, soc io logy, psychology and psychiatry. Ba teson with others, s tudied sch izophren ia and deve loped family therapy using sys tems thinking (Capra , 1996). 59 O n e of the early concepts in this theory is that living sys tems are open sys t ems that operate far f rom equil ibrium. The formation of complex s ys t ems involves the tens ion between crisis and transformation, with an organizat ional crisis manifest ing a s a breakdown of sys temic ba lance, while a l so representing an organizat ional transition to a new state of ba lance (Capra , 1996). F rom cybernet ics c a m e the concept of the f eedback loop, a circular pattern of causa l ly connec ted e lements . Th is "...led to new percept ions of the many self-regulatory p rocesses character ist ic of life" (p.59). Us ing sys tems thinking, a soc ia l s ys tem can be s e e n to have a sys tem of communicat ion which has feedback loops a s one of its properties. In soc ia l sys tems , ideas such a s a 'v icious circle', 'self-fulfilling prophecy ' or the 'bandwagon effect' have been recognized for a long t ime as obv ious forms of self-reinforcing feedback loops. Us ing s y s t ems ideas, a communi ty has the ability to regulate itself and learn from its mis takes if it has an active network of communicat ion through which the c o n s e q u e n c e s of act ions can be transmitted and returned to the source v ia f eedback loops. The communi ty c an therefore correct mistakes , regulate and organize itself (Capra , 1996). Karl Deutsch (In Macy , 1998) writes that in soc ia l s ys tems "...free circulation of information w a s essent ia l to health and surv iva l " (p.43). The power of a dominant group in society to control the flow of communica t ion and information may be effective for its own growth. If it directs the flow of information from its own self-interest it may block or distort the flow of communica t ion to and a m o n g other groups. T h e s e groups then b e c o m e marginal ized a s a result of insufficient information to regulate and organize efficiently. Self-organization is "...the central concept in the s ys t ems v iew of life, and like the concepts of f eedback and self-regulation, it is l inked closely to networks. The pattern of life, we might say, is a network pattern capab le of self-organization" (Capra , 1996, p.83). In the study of chemistry, scientists d i scovered that the dissipation of energy in open sys t ems b e c o m e s a source of order. W h e n the flow of energy and matter increases , at a certain point these s ys t ems transform into 60 new structures of increased complexity. In open sys tems , there is a phenomenon of self-organizat ion s u c h that ". . .coherent behaviour eme rges spontaneous ly at critical points of instability far f rom equil ibrium" (Capra , 1996, p.88). Scient ists and mathemat ic ians involved in complexity and c h a o s theory deve loped the mathemat ica l tools that could mode l the nonlinear in terconnectedness found in networks. Th is mathemat ics " . . .embodies the s a m e shift of emphas i s characterist ic of s y s t ems thinking-from objects to relationships, from quantity to quality, f rom subs tance to pattern" (p.113). Scient ists, such a s J a m e s Love lock and Lynn Margul is, examined the earth as a comp lex living sys tem and generated the G a i a theory. "No longer a dead rock we live upon , the Earth is a living p rocess in which we participate" (Macy, 1998, p.44) Autopoiesis. The Ch i lean biologist and neuroscientist, Humberto Maturana , deve loped the theory of autopoies is , the organizat ion of living sys tems , to dist inguish between living and n o n -living sys tems . Autopo ies is der ives from the G reek language, with 'auto' translated a s 'sel f and 'poiesis ' from the s a m e root as poetry and translated a s 'making ' . His innovation w a s to link both cognit ive and biological structures into the organizat ion of life. His first conc lus ion was that a network pattern is the bas ic organizat ion of living; a pattern "...in which the function of each component is to help produce and transform other componen ts while maintaining the overall circularity of the network" (Capra , 1996, p.96). His s e c o n d conc lus ion was that the nervous sys tem w a s not only self-organizing but a lso self-referring; perception or cognit ion "...do not represent an external reality but rather specify one through the nervous sys tem's process of circular organizat ion" and "...the continual creation of new relationships within the neural network" (p.96).-Maturana worked with another neuroscientist, F r a n c e s c o Vare la , to deve lop the Sant iago theory, a sys tems theory of cognit ion. The idea that life and cognition are inseparably connec ted is a radical new concept which promises to change the Car tes ian concept of the 61 division between mind and matter. "Thus M ind-o r more accurately, mental p ro ce s s- i s immanent in matter at all levels of life" (Capra , 1996, p. 172). The mind is a p rocess of cognit ion and the brain is one structure through which this p rocess operates . The relationship between the mind and the brain is the relationship between p rocess and structure. Psychosomatic processes. Recen t research has found that the nervous sys tem, the immune sys tem and the endocr ine sys tems all form one cognit ive network with each sys tem having structures through which the p rocess of cognit ion operates . The understanding of the 'psychosomat ic ' or mind-body v iew of health will grow a s these three s ys t ems are s e e n to be communica t ing and interacting. The neuroscientist Cand i c e Pert (1997) and her co l l eagues identified groups of molecu les cal led pept ides and d i scovered that they function a s m e s s e n g e r s between the nervous and immune sys tems , showing how all three s ys t ems link into one network. "Pept ides are the biochemica l manifestation of emot ions ; they play a role in coordinating activities of the immune sys tem; they link and integrate mental , emot ional , and biological activities" (Capra , 1996, p.283). O n e ramification of the d iscovery that there is a biochemistry of emot ion, is that " . . . repressed t raumas c aused by overwhelming emotion c an be stored in a body part" and the body thus b e c o m e s the receptacle for the unconsc ious mind (Pert, 1997, p.141). Pert a lso s e e s hope for treatments that use the results of her research into the molecu les of emot ions ; treatments which use bodywork to re lease t raumas stored in the body and biofeedback, v isual izat ions, relaxation and meditation to help people control their own bodymind sys tems . The belief by s o m e consumer/surv ivors in the eff icacy of these non-conventional treatments for the recovery of mental health is val idated by this new research . Pert (1997) is concerned that drugs, such as those that are being used to treat depress ion and psychos is , are cascad ing too many c h a n g e s throughout the bodymind sys t em. S h e says that the implications of her research are that "all exogenous drugs are potentially harmful to the 62 sys tem, not only a s disrupters of the natural ba lance of the feedback loops involving many s ys t ems and organs , but because of the changes that happen at the level of the receptor" (p.271). S h e says that research needs to focus on how our own body creates endogenous drugs, then to aid their creation to bring the sys t ems back to ba lance. A n d if researchers are not able to make condit ions appropriate for this to happen , to create exogenous drugs that mimic the natural ones and " . . .cause minimal interference with the bodymind 's ba lance because they have been deve loped with an awareness of the whole psychosomat i c network" (p.272). Bringing forth a world. There are other important character ist ics of living sys tems . Their autopoiet ic organizat ion a lways inc ludes a boundary which def ines the sys tem as a unit. Living s ys t ems interact with their environment through 'structural coupl ing ' ; that is, e a ch interaction triggers a structural change in the sys tem. This 'structural coupl ing ' fosters creativity a s the sys tem adapts and learns, a key property of all living sys tems . The structural changes in the sys tem constitute acts of cognit ion. By specify ing which perturbations from the envi ronment trigger its changes , the sys tem "brings forth a world"... Cogni t ion , then , is not a representat ion of an independent ly existing world, but rather a continual bringing forth of a world through the p rocess of living. (Capra , 1996, p.267) The world brought forth by a certain organ ism in the p rocess of living is determined by its structure (1996). A s an organ ism deve lops complexity, at a certain point, it coup les structurally not only to its env i ronment but a lso to itself, and brings forth an internal world as well as an external one. "In human beings the bringing forth of such an inner world is l inked to language, thought and c o n s c i o u s n e s s " (Capra , 1996, p.270). This sel f-awareness, or consc i ousness , is tied closely with language and communica t ion . Maturana (In C a p r a , 1996) s a y s that communica t ion is not a t ransmiss ion of information but a ".. .coordination of behav iour a m o n g living s ys t ems through mutual structural coupl ing" (p.287). 63 A s humans we exist in l anguage ; together in l anguage we coordinate our behav iour and we bring forth our world. "In a human conversat ion our inner worlds of concepts and ideas, our emot ions , and our body movemen ts b e c o m e tightly l inked in a complex choreography of behavioural coordinat ion" (p.290). A film analys is of conversat ion shows that it is a dance between the s e q u e n c e of s p e e c h patterns and the coordinat ion of minute movemen t s of the bodies of both speake r and listener. In this theory of living sys tems by Maturana is the scientific bas is for the belief in the soc ia l construct ion of our world. Accord ing to Maturana 's theory, the explanat ions of consc i ousness in terms of neurophysiology, phys ics , chemistry, or even biology and psychology are not poss ib le . He bel ieves that "...we can understand human c o n s c i o u s n e s s only through language and the whole socia l context in which it is e m b e d d e d " (p.291). Maturana bel ieves that early human beings were able to cooperate and form communi t ies be cause of the deve lopment of language. It w a s not information exchange , it w a s the increased ability to cooperate which w a s the crucial role of l anguage (Capra , 1996). The Doctrine of the Impermanence of Self F rom the v iew of Buddhist phi losophy, "...existential human suffering ar ises. . .when we cling to fixed forms and categor ies created by the mind instead of accept ing the impermanent and transitory nature of all things" (Capra , 1996, p.294). Cognit ive sc ience has c o m e to the s a m e conc lus ions a s two thousand year old Buddhist thought. "We bring forth a self just a s we bring forth objects. Our self, or ego, does not have any independent ex istence but is a result of our internal structural coupl ing" (p.295). Cl inging to the idea of a permanent f ixed self is the root of much suffering, it is a 'Cartes ian anxiety', an ontological insecurity. Our d i l emma is that we create abstract ions and then bel ieve they belong to an objective, independent ly existing reality. This anxiety is rel ieved by shifting our focus from objects to relationships, then "... we can realize that identity, individuality, and autonomy do not imply sepa ra teness and independence " (p.295). 64 It is abstract thinking that has led us to s e e nature, a s well a s our human society, as f ragmented and c o m p o s e d of separate parts. This in turn "...has al ienated us from nature and from our fellow human beings and thus diminished us. To regain our full humanity, we have to regain our exper ience of connec tedness with the entire web of life" (Capra , 1996, p.296). This is the bas is for the study of d e e p ecology. D e e p eco logy is a phi losophy and a movement which quest ions fundamenta l p remises of our society created by industrial and technological growth and the notion of e conomi c progress at the e x p e n s e of the natural world. "It holds that we c an break free from spec i es ar rogance which threatens not only ourse lves but all complex life-forms within reach" (p.46). Reconnection to the Web of Life The w e b of life is c o m p o s e d of interconnecting s y s t ems at different levels and of varying complexity. Every sys tem is a 'holon' , it is both a whole , is m a d e up of subsys t ems and is a l so part of a larger sys tem. Just a s o rgan i sms evo lve and deve lop emergent propert ies at new levels of complexity, humans have deve loped a self-reflexive c o n s c i o u s n e s s in r esponse to the greater complexity of their s ys tems which could not be dealt with by instinct or trial and error. Thus " a new level of self-monitoring e m e r g e d - f e e d b a c k about feedback, in ever-complexifying assemb l i e s of loops" (Macy, 1998, p.43). The next holonic level, soc ia l s ys tems , is not self-reflexive. Complexi ty is increas ing with the expand ing networks of communica t ion in the global ization of society. S o m e people bel ieve that there is now a survival cr isis and that the current level of sys tems are breaking down because of ever-expanding industry and technology and its c o n s e q u e n c e of environmental degradat ion of the earth. "Dangers to their survival move living sys tems to evo lve" (p.44). N e w v iews of mental health s u c h as in t ranspersona l psychology and ecopsycho logy reflect the change of perspect ive from reconnect ing with the w e b of life and the deve lopment of a more spiritual outlook for understanding distress. With the alienation from nature c o m e s an existential 65 anxiety; people exper ience distress when the earth's survival is being quest ioned ; there is anxiety and insecurity in a t ime of rapidly chang ing soc ia l , e conomic and political s ys tems ; and many communi t ies feel power less to control what is happening around them. T h e s e all contribute to a pain and angu ish which people exper ience that can be pathologized in traditional psychiatry. "Our cultural al ienation from nature engenders not only ca re less and destructive behav ior toward our environment, but a lso many c o m m o n disorders such a s depress ion and addict ion" (Macy, 1998, p.49). T ranspersona l psychology redef ines s o m e of what is labeled and treated a s psychos i s in psychiatry a s non-ordinary states of c o n s c i o u s n e s s a n d indicative of 'spiritual emergenc ies ' or ' t ranspersonal cr ises ' . "If properly treated they c an result in psychosomat i c heal ing, personality transformation, and consc ious evolut ion" (Grof, 1983, p.23). The content of spiritual emergenc i es is div ided by Grof and Grof (1989) into three categor ies : (1) the biographical , exper iences related to an individual 's life history; (2) the perinatal, exper iences related to t raumas around birth; and (3) the t ranspersona l , exper iences that are far beyond the limits of ordinary human consc i ousness . "B iographical a spec t s of spiritual emergenc i es involve the reliving a n d heal ing of t raumatic events in one ' s history" (p.9). T h e perinatal invo lves the reliving and heal ing of the birth t rauma which often entails encounter ing aspec t s of what J ung cal led the 'collective unconsc ious ' and the themes of death and rebirth. T ranspersona l exper iences involve "..the t r anscendence of the ordinary boundar ies of personality. . .and those that have been cal led spiritual, myst ical , religious, occult, magica l , or paranormal " (Grof & Grof, 1989, p.10). Grof and Grof v iew these spiritual emergenc i es a s cr ises of the evolution of consc i ousness . With the ideas from deep eco logy and the ho lonomic shift of consc i ousness , a n inc rease in spiritual emergenc i e s would be predicted with the transition to a new world consc i ousness . 66 There are many people in our society who have taken up spiritual pract ices as part of their sea r ch for a better quality of life and these are many of the people who are encounter ing spiritual cr ises. It is those who know what they are exper ienc ing, from having exper ienced it themse lves , w h o need to be involved in their treatment so that these people are not pathologized and enter a cyc le of drug dependency and regress ion under psychiatr ic care . There is the need for free circulation of information in order to create a 'Life-sustaining' society. B locking this circulation is institutionalized sec recy and the protection of the ves ted interests of corporat ions which even democrat ic governments engage in to suppress information injurious to bus iness interests (Macy, 1998). ".. .Any sys tem that consistently s u p p r e s s e s f eedback-c los ing its percept ions to the results of its behav ior- is suic idal " (p.54). Macy (1998) has deve loped personal and group work to aid the reconnect ion of people to the 'web of life' and to counter the despa i r and grief that is caus ing so much of their d istress. This work inc ludes unblocking our emot ions ; our feeling of pain for the world is natural a s we are interconnected to all that l ives. "When we deny or repress our pain, or treat it a s a private pathology, our power to take part in the heal ing of the world is d imin ished" (p.59). W h e n we are able to express the pain and grief that we feel, then w e can exper ience fully our connect ion to the communi ty of life on earth. W h e n we b e c o m e more fully connec ted to the web of life, we may b e c o m e empowered and it will se rve our own self-interest to b e c o m e act ive in the creation of more cooperat ive and ecological ly-minded worldviews which will inf luence the shift to self-susta in ing rather than self-destructive global human pract ices. T h e living sys tems theory, the d iscovery of the molecu les of emot ion, and the study of deep eco logy are all in support of the shift away from the individualization and pathologization of people 's distress to a more relational and empower ing perspect ive. A perspect ive which u ses not only the bodymind sys tem and the reconnect ion to life, but a lso the co-construction of the reality, how we "bring forth our world ' , to further understanding and liberation. 67 The Researcher's Standpoint: Transparent. Located and identified In order to clarify my stance as a researcher I return to the ideas of standpoint theory. Swigonsk i (1993) states that there are three quest ions a s k e d by standpoint research : Wha t are the va lues and methods at the base of this research? What is its pu rpose ? A n d how can the researcher 's reflexivity be incorporated? I shal l use these quest ions to clarify my position a s researcher . The first part, developing the base of research with people who have used or are using the psychiatr ic s ys tem, can be best determined in interaction with representat ives of this group with a s much col laboration a s poss ib le . The research quest ion and methodology were d i s cussed in severa l meet ings with the member s of the Self Help G roup who were working to deve lop a constitution for their application for non-profit status. The miss ion statement and purposes deve loped for the constitution were relevant to framing the i s sues that these member s faced in their day-to-day l ives and gave a good base from which to d i s cuss research quest ions . The purpose of the research for the member s of the Self He lp Group ( SHG) is to have information avai lable to support proposa ls for funding, and to direct the deve lopment of future p rograms and serv ices . The core group of the S H G wished to a c c e s s information on the v iews of the m e m b e r s of the S H G about i s sues they faced in the psychiatric s ys tem, and about the activities or serv ices which have helped them in the p rocess of recovering their mental health. O n e of the purposes behind my col laboration with this group for research w a s the a im to follow soc ia l work principles while conduct ing research ; research which is participatory, which has the potential to aid the members ' liberation from oppress ion and their empowerment to deve lop self-help programs and to determine se rv i ces to aid the recovery process . The other purpose is to produce original research for a thesis towards a master 's degree in soc ia l work. Th is degree is necessa ry for a c c e s s to employment a s a socia l worker in the mental health sys tem or on a palliative care ward of a hospital. This employment will a lso ensure a good 68 wage , a respected professional posit ion, soc ia l status a s well a s authority and a certain amount of power. My hope is to ach ieve this self-interested goal while a lso acting a s an ally in the promotion of the a ims of the S H G . T h e third quest ion is, how can the researcher 's reflexivity be incorporated in the project? Soc ia l workers are trained to deve lop professional sel f-awareness. Th is sel f-awareness will be expanded by researchers "...to include an analys is of their impact on the research a s soc io -political-historical be ings" (Swigonski , 1993, p. 179). Re sea r che r s must examine their soc ia l position and how this effects the research . "Their c l ass , culture, ethnicity, and gender assumpt ions , beliefs, and behav iours must be p laced in the f rame of analys is and in the research report" (p. 179). My own standpoint is different from many of the m e m b e r s of the S H G in that I w a s not label led a s having chronic mental i l lness. I w a s able to recover relatively quickly because , I bel ieve, f rom the advan tage of coming from the dominant c l ass , hav ing a support ive middle-c l ass family with a mother at home to care for me after the hospital ization, and being able to deve lop conf idence in my future by returning to university and successfu l ly complet ing my degree . I was fortunate that I w a s not told my potential w a s limited, or that I would have to be on medicat ions forever, and s o did not lose my hope for a brighter future. However , my reflexivity is add res sed with my own history of involvement in the psychiatric sys tem. The result of conduct ing research in an a rea I a l so have exper ience with has increased my tendency to be self-reflexive. In fact, I found it imposs ib le not to be reflexive when my own identity w a s affected by s t igma, e ven if my psychiatric exper ience began thirty years ago and only lasted for two years . The reality of the oppress i ve nature of that exper ience still reverberates in my being. There is a l so the difference that a l though I a m a single mother who has exper ienced poverty and discrimination, I a l so have had the opportunity to a c c e s s higher educat ion and s o have the 69 potential for employment with a good income. My position of priviledge from my background in the dominant culture has enab led m e to bel ieve in m y right to educat ion and profess ional employment . My fortune in recover ing from the emotional and mental d istress which brought me into contact with the mental hearth sys tem, part of which w a s comple ted away from the sys tem, a lso enab les me to bel ieve recovery is poss ib le for more people . A l though many consumer/surv ivors were not fortunate to have the supports that I had, or the possibility of recovery away from the mental health sys tem, they can be ass is ted through self-help and the support of their peers ; especia l ly by their peers who are role mode ls of significant recovery f rom the label of ser ious mental i l lness. I must emphas i ze that recovery d o e s not m e a n a return to the s a m e state of mental health held before the deve lopment of the emotional d istress. Many people live full and productive lives while still exper ienc ing occas iona l s ymptoms and/or still taking medicat ions (Anthony, 1993; D e e g a n , 1996). Fo r others, their exper ience w a s part of a personal or spiritual growth within a holistic heal ing p rocess and their mental health is improved in recovery (Laing, 1989; Grof & G r o f , 1989). Reflexivity a l so promotes us ing onese l f for research , bes ides one ' s knowledge of theory a n d literature, using one 's own reactions and exper ience of the material a s a tool for research . Us ing concentrat ion and contemplat ion, one b e c o m e s immersed in the texts of the interviews, obse r ves one 's react ions to the narratives, al lows reverberat ions to occur f rom these exper iences , and insights to ar ise. Hav ing a c o m m o n exper ience but being privi ledged can lead to both the possibility of s o m e accuracy of v iew and of s o m e bl indness to aspec t s of diversity in the research . This awa reness is necessa ry to be vigilant for where errors in v iew c a n ar ise . Bleier 's guidel ines (in Swigonsk i , 1993) for reflexivity in reports cal ls for researchers 70 ...to be explicit about their assumpt ions , honest and thoughtful in their cho ice of methods, open in the interpretation of e a ch study and its s ignif icance, c lear in descr ib ing poss ib le pitfalls in the work and its conc lus ions , and respons ib le in the l anguage u sed to convey their results, (p. 180) In the attempt to answer quest ions from my own exper ience over the years I have deve loped a s tance which quest ions the assumpt ions and role of the past and present mental health sys tem. I did investigate psychologica l theories but found that there was still little understanding of the exper iences I had undergone. I looked to eastern religions and phi losophy to find out more about how the mind/body/spirit is v iewed from those perspect ives . There are still more quest ions than answers from this study but I have found a base to work from with the va lues of Buddhist phi losophy. Finally, I returned to university and in soc ia l work I have studied soc ia l , political and e conomic factors and how they interact with individual distress. The emancipatory potential of soc ia l work is what attracted m e to this profess ion a s well a s a des i re to be e n g a g e d in the work of compass iona te act ion. Us ing standpoint and participatory research raises the possibility for the participants to deve lop a critical c o n s c i o u s n e s s of their oppress ion and the methods used to maintain their marginal izat ion. Deve lop ing the most involvement in the research poss ib le for the participants is effective for their empowerment . Bringing the ideas I have learned from the schoo l of soc ia l work to my interactions with the Self He lp G roup has begun an exchange of critical v iews. I have learned much from their expert ise as people who have been given the label 'chronically mentally ill', who are quest ioning what that actually m e a n s to them and are learning to define their exper iences for themse lves . "The purpose of research must be forthe subjects of the research , to a d v a n c e their c a u s e s " (Swigonski , 1993, p. 178). The report of this research , which will be deve loped for the S H G and its member s to aid the group 's future deve lopment , can a lso be distributed to organizat ions with 71 which they are connec ted , and act a s a m e a n s of publicity for their goa ls for future programs, seed ing the way for a c cess i ng funding, and gaining legitimacy as an organizat ion. Limitations: What Parts of the Puzzle are Missing? S o m e of the pitfalls in this study arise on one hand f rom not being able to convey the full range of v iews from the diversity and heterogeneity of m e m b e r s of the populat ion, and on the other hand from the interpretation and ana lys is being conduc ted only by one person . The ideal would have been that the whole project be conduc ted by a team of member s from the Self He lp Group . The advantage of my position is that I straddle severa l groups, s o m e opp re s sed and s o m e from the dominant c l ass . But my background in the dominant culture m e a n s a lack of exper ience with s o m e diversity i ssues . Be ing physical ly able, of heterosexual orientation, and from a white Ang lo-Saxon background, means that I do not have a full appreciat ion of people 's exper i ence from other standpoints. T h e ethnicity, sexua l orientation and ab le ism of people who use the psychiatr ic sys tem greatly impacts their exper ience. S o m e people bel ieve that the difficulties of deal ing with discrimination in our society is the c a u s e of the distress which brings many people to seek help in the psychiatr ic sys tem. The Self-Help G roup w i shes to start gay and lesbian support groups from the w i shes of those who find it difficult to have it known that they have a psychiatr ic d iagnos is within those communi t ies . Other studies need to be done to investigate how diverse groups exper ience psychiatric se rv i ces and the process of recovery. T h e compl icat ions of prob lems such a s physical disability and psychiatric d iagnos is , or psychiatric disorder and subs tance abuse , need a lso to be studied f rom the perspect ive of those who are g iven these multiple d i agnoses . The focus of this study being the member s of this one consumer/survivor-run group d o e s leave out many of the members of the total population of those who use or have used the 72 psychiatr ic sys tem. There are consumer/surv ivors who wish to remain within traditional psychiatr ic serv ices under the superv is ion and support of mental health profess ionals in order to further their own and others ' recovery. There are a lso people who have recovered their mental health a n d have m o v e d out of the psychiatr ic d i s course sever ing connect ions to all g roups or serv i ces deal ing with mental health i ssues . T h e s e peoples ' vo i ces have not been a c c e s s e d in this study. There is a danger of becoming entrenched in a standpoint to the extent that by defining onese l f a s having a specif ic s tance one is actually creat ing the "Other" in the process . The polarization of ' consumers ' and ' surv i vors ' 1 4 g ives a n examp le of this p rocess ; e a c h s tance c a n be def ined in contrast to the other which is s e e n to be mis informed, led astray by influential people , and actually blocking the progress of mental health reform. It would be productive to provide increased venues for dia logue between ' consumers ' and 'survivors ' to dec r ease their polarization and re-focus on their common ly held goa l to promote and increase the orientation of se rv i ces away from a focus on pathology and 'mental i l lness' and towards the p rocess of recovery. By immers ing myself in the Self-Help Group , with its s tance arising from the exper i ences of its m e m b e r s and its struggle to provide peer-run programs, I have e m p h a s i z e d their standpoint in my interpretations. This standpoint is not a unified one ; there are multiple v iewpoints from those who support the work of the traditional mental health sys tem to those who bel ieve it should be replaced by more humane and less hierarchical and oppress i ve serv ices . My own exper ience with part of my recovery outside of the mental health sys tem a lso leads me to bel ieve that s o m e people 's ability to fully recover d e p e n d s on transforming and then leaving the psychiatr ic d iscourse . T h e s e beliefs should not mean the denigration of what others bel ieve 1 4 "Consumers" are those who use psychiatric services and who believe that by remaining in the system they can more skillfully assist in the reform of potentially abusive mental health practices. "Survivors" believe that traditional psychiatry needs to be abandoned for more humane treatment services under the control and guidance of those who use the services. 73 and have exper ienced . Peop le hold different v iews and have var ied exper iences in the field of mental health and these cannot be e n c o m p a s s e d by one perspect ive. My position and my background are part of this research . B e c a u s e of my perspect ive certain aspec t s of the study will be invest igated and others will be left out. A l l of my prev ious life, the changes that I have encountered , affect the analys is and interpretation of this research . Conclusion Witkin (1993) explores a human rights approach to soc ia l work research . He cal ls research a practice, and practice research , b e c a u s e they are both ". . .discipl ined, reflective, va lue-based, soc ia l pract ices that attempt to further soc ia l work goa ls " (p.250). H e acknowledges construct ionists, feminists and critical theorists who attempt to use the power of soc ia l research to gain new understandings of the soc ia l and political d imens ions of research . "Who would deny that the power to n a m e is the power to differentiate, to dec ide what is to be included and exc luded from our d iscourse , and hence our imaginat ions" (p.250). W h e n this power is used to promote human rights it c an foster change which will benefit all of society. The inclusion of the vo ices of those who use or have used the psychiatric sys tem in socia l work research can help to reveal the nature of the soc ia l construct ion of their psychiatr ized identity, and work to address oppress ion by the institution of psychiatry and the loss of the human rights to f reedom and self-determination. Feminist and standpoint theories, co-cultural and sys tems theories provide a f ramework which ar ises from a paradigm which f o cuses on in terdependence , consensual i ty and shared responsiblity. This theoretical f ramework can be the foundation for respectful research methods for use with groups who a re opp re s sed and margina l ized; it c an broaden understandings and gain insights into the ways things work; give express ion to usually s i lenced vo ices ; and provide a vehic le for the socia l transformation and empowerment for all those involved in the research . 74 CHAPTER 4 Research Methods: How to Find Out T o o often the w ishes of peop le w h o u s e or have u s e d the mental health s y s t em are cas t as ide a s others determine what is in their best interests, Their thoughts and ideas are often d iscounted as being a part of the s ymptoms of mental i l lness and hence "pathological ' , definitely not the bas is f rom which to make inquiry. Resea r che r s honour members of a marginal ized group when they involve the member s in the research p rocess and when the f indings c an further the group's a ims. Otherwise, they run the risk of the being exploitative, or even harming these vulnerable groups. Participatory action research can be the most useful to marginal ized groups and sets their a ims as its central focus . Participatory Action Research: Co-conspiracy Participatory action research involves a s much a s poss ib le the member s of the group being researched . Th is involvement could range f rom full control of the project with no outs ide researcher , to col laboration with a professional researcher on the planning and des ign , perhaps conduct ing interviews, maybe analyz ing the data, and possibly the writing of the research report. The orientation for this type of research is to real ize an a im or goal of the group being researched s o that the f indings lead to s o m e form of act ion. For example , this act ion could involve c h a n g e s to existing programs or the initiation of new ones . R e s e a r c h which supports the goals of people who use or have used the psychiatr ic sys tem can a lso support their empowerment and consequent ly their p rocess of recovery. Roge r s and Pa lmer-Erbs (1994) say that this type of research is more pertinent and meaningful to consumer/surv ivors . T h e s e authors bel ieve P A R must receive sufficient funding and not be d iscounted for lack of rigor, for it has practical mean ing . In conc lus ion they s a y that, It is critical that the "voice of the consumer ' be acknowledged in research and evaluation studies. . .Al lowing c o n s u m e r s to control and conduct research and evaluat ion projects will 75 afford them the influence, status, and power that has long been avai lable to mental health and rehabilitation researchers and evaluators. (p.11) Emer ick (1996) writes that traditional self-help researchers would only use 'therapy' self-help groups a s valid subjects b e c a u s e of their scientif ic b i ases towards individual change . H e proposes that there is a need for more self-help research which "...reflects the phi losophy of social realism, emphas iz ing the importance of the soc ia l and cultural context, and adopting b iases of an overtly political and soc ia l sys temic orientation" (p.156). R a p p , S h e r a and Kisthardt (1993) write that defining problems as the fault of the victim is not only c o m m o n to mental health research but a l so to research in socia l work and psychology. They advoca te for research that empowers people with seve re mental i l lness; examining consumer/surv ivors ' strengths, and the way these strengths are manifested in self-help groups . The perspect ive of consumers/surv ivors needs to be brought to light and the importance of this is revealed by examining the results of research with family member s of consumer/surv ivors . "A major reason that research on the role of the family has moved from person blaming has been the recent literature and research based on the family 's own perspect ive" (Rapp et al. , 1993, p.729). T h e s e articles confirm the importance and the need for more research that brings out the vo ice a n d ideas of t hose who have u sed or are us ing the psychiatr ic s y s t em. The col laborat ive method of P A R will empower the m e m b e r s of the Self-Help Group . The research will be useful to further their goa ls , and provide benefit and interest for me, making winners out of all the co-researchers. Research Design M y des i re w a s to conduct a participatory act ion research by enlisting m e m b e r s of the Self-Help G roup to b e c o m e full researchers and by eliciting ideas for act ions for change to follow the study. Unfortunately, I cou ld not find member s who w ished to conduct interviews or ass is t in the analys is . I bel ieve if I had been able to offer remunerat ion it would have changed the response . 76 Many who are a s k e d to volunteer their work a longs ide paid mental health workers have b e c o m e cynical and wary of joining projects which are not their own . They often report that their participation is token, is ineffective in realizing any of c h a n g e s which they suggest , or se rves a political a g e n d a with agenc ies appear ing to col laborate while actually patronizing and discr iminating against the use rs of their serv ices . I w a s ab le to involve the m e m b e r s of the Se l f Help G roup ( SHG) in the decis ion-making of the research , ask ing for their opin ions on the topics to be cove red and on the quest ions used to explore them. I a lso m a d e plans to include f eedback from the co-researchers. The first part of the research des ign w a s to conduct interviews with s ix individuals. I wanted to a sk a min imum of quest ions in order to elicit stories about the co-researchers ' exper iences in the psychiatr ic sys tem and in the p rocess of their recovery. The follow-up of two focus groups w a s p lanned to increase the participation by other m e m b e r s of the S H G , to val idate and add to the i s sues ra ised in the individual interviews, and to deve lop p lans for p rograms that wou ld address the members ' conce rns . F o c u s groups are useful ways of increas ing participation by a c ce s s i ng more perspect ives and of pulling out new ideas by encourag ing creative dia logue between participants. F o c u s groups can be action-oriented and their s u c c e s s can inspire and increase the groups ' involvement in other participatory projects (Krueger, 1994). I a l so p lanned to return the ana lyses of the interviews and focus groups for f eedback from the co-researchers to further increase their participation and to improve the validity of the interpretation. Th is would a lso sensi t ize me to the i s sues of what was appropriate to reveal and what constituted a respectful rendering of the d ia logues f rom the interviews. Data Collection: Tell Me a Story! Sampling. The cho ice of the research topic and population to be samp led c a m e out of a joint dec is ion by myself and the m e m b e r s of the S H G . M e m b e r s of the group were applying for non-profit status and they wanted to have research to back proposa ls for funding once they had 77 rece ived that status. I wanted to conduct a participatory action research which furthered the a ims of a marginal ized group; I bel ieve this type of research is an ideal match for soc ia l work va lues . T h e sampl ing criterion for the individual interviews w a s quite wide; respondents were people who use or have used the psychiatr ic sys tem. The m e m b e r s of the S H G are people who fit the population and who a lso have exper ience with the ideas of self-help. The support groups are normally organ ized by gender and/or ethnic background , the except ion being a new group which will focus on the deve lopment of consumer/survivor-run bus inesses . I will use the term co-researcher in the place of the term participant or interviewee to honour the co-construction of the research . T h e co-researchers for individual interviews were recruited through the use of a flyer which w a s handed out by the facilitators of the S H G support groups. Fol lowing the method of snowbal l sampl ing , the member s of the groups were a lso a s k e d to p a s s on the information to others outside of the S H G who would be interested in participating. There was a l so a request for people who were interested in becoming researchers and wanted to learn to conduct interviews and ana lyze data. T h o s e who consented to be interviewed were all m e m b e r s of the S H G , three w o m e n and three m e n , Valer ie, J ane , Kanti , J a m e s , Ray, and Jeff (pseudonyms) . They range in age from thirty to fifty years of age , with two of the m e m b e r s ra ised outs ide of C a n a d a . The criterion of the sampl ing for the focus group interviews w a s different than for the individual interviews. The focus of these interviews was to verify the i ssues found in the individual interviews, to add any new ones , and to deve lop ideas for programs which the S H G could offer. Only member s of the S H G were recruited for these interviews. T h e support groups of the S H G were sent flyers ask ing if they would participate in a focus group interview. Two groups , one a men 's , the other a women ' s group gave permiss ion for the interview to be 78 conduc ted . They were not originally c h o s e n because they were gender-specif ic; they were simply the groups which consented to a focus group interview. The research quest ion w a s deve loped in col laboration with member s of the Self Help Group : " Wha t are the exper iences of those who have used the psychiatric sys tem ? " Individual interviews. In this initial phase of research , six one-hour long or longer in-depth, semi-structured interviews were conducted and recorded on tape. Field notes were m a d e after e a c h interview and m e m o s were m a d e when insights a rose . The place where the interview w a s conduc ted w a s c h o s e n by the co-researchers. Three were conducted in the co-researchers ' homes , two at the office of the S H G , and one in a meet ing room at a local drop-in centre. There were basical ly two quest ions in the interview guide: "What has been your exper ience of the psychiatric s y s t em? A n d what exper iences have you had in your p rocess of recovery? " The relatively unstructured nature of the interview al lowed the co-researchers to tell their stories in the manner they chose . "We are more likely to find stories in studies using relatively unstructured interviews where respondents are invited to speak in their own vo i ces , al lowed to control the introduction and flow of topics, and encouraged to extend their r e sponses " (Mischler ; 1986, p.69). In this methodology, the interviewer is to encourage the co-researchers with act ive and interested l istening, extending and clarifying their stories with the use of probing quest ions. The co-researchers ' role is to co-construct their story with the interviewer; the stories are formed from the d iscourse spoken in context; the quest ions, replies, and the non-verbal communica t ion are inf luenced by the expectat ions both bring to the interview. The researcher 's skil l , the relationship between the researcher and the co-researcher, their respect ive posit ions of power and socia l status all inf luence the story told (or not told) (Lieblich, Tuba l-Mashiach, & Zilber, 1998). With a researcher who has a history of similar exper iences , who does not have institutionalized power to wield, and who is sympathet ic to the a ims of the co-researchers , there 79 is more c h a n c e to hear stories which are normally c enso red in interactions with those in dominant posit ions. The transcripts of interviews are soc ia l construct ions of exper ience. Verbat im transcription captures a s much of the interview as possib le . The interviews were c leaned up a little, s o m e of the e x c e s s 'urns ' and ' ahs ' were deleted, when the transcripts were returned for co-researcher check ing . Focus group interviews. Fol lowing the complet ion of the individual interviews focus group interviews were conducted . The first, with the men 's group, met at the office of the S H G . A list of i s sues taken from the individual interviews w a s given to the co-researchers and they were a s k e d to comment on whether they agreed with these i s sues and if they had others to add . They were a l so a s k e d to brainstorm ideas for programs which could be deve loped to address s o m e of these i ssues . The s e c o n d group interview w a s held at a communi ty agency , the usua l meet ing place for the w o m e n ' s group. The i ssues from the individual interviews, and the i ssues and ideas raised in the men 's group were all brought to this interview and the w o m e n were a lso a s k e d to cons ider these i s sues , add more, and brainstorm for additional program ideas. The benefits of a focus group interview are that ". . .people spark off one another, suggest ing d imens ions and nuances of the original problem that any one individual might not have thought o f " (Rubin & Rub in , 1995, p. 140). P rob l ems with many focus g roups are that they are a collection of strangers and the facilitator has to work to create a comfortable cl imate for sharing ideas . With these support g roups the advantage w a s that they knew each other and were a lready comfortable with shar ing. The work w a s for myself a s the facilitator to be accepted as a safe person with w h o m to d i s cuss difficult i s sues with. I had met a few of the co-researchers in previous group meet ings. Th is , plus the information about my own background as a consumer/survivor, and that I w a s wanting to contribute to the deve lopment of the S H G , all 80 helped to assu re them that I w a s sympathet ic and would respectfully listen to them a s having knowledge and expert ise. With the men ' s group the d isadvantage w a s that I w a s female and more persona l subject matters may not have been add ressed because of this. I did meet with them prior to the interview to explain what the research w a s about in order for t hem to dec ide whether they wou ld participate or not. I felt quite comfortable with both g roups and there appeared to be no difficulties in shar ing ideas. T h e transcripts from the focus groups were taken back to the member s to check for accuracy . After analys is the f indings were a lso shown to the groups to check if they honoured the perspect ives of the co-researchers . The whole research p rocess w a s descr ibed in a University of British Co lumb ia Eth ics form. The form w a s entered for their inspect ion and permiss ion to begin this research w a s rece ived from the U B C Ethics Board . Data Analysis: Now I'll Tell You a Story! Accord ing to Rub in and Rub in (1995), data analys is is a continuation of the dia logic p rocess of interviewing. It is "...the final s tage of listening to hear the mean ing of what is sa id " (p.227). By transcribing the interviews, the long hours of listening and typing were ba lanced by the exper ience of full immers ion. The eno rmous amount of material gathered in these in-depth interviews is daunt ing. But a s the ideas emerge and the p rocess of d iscovery unfolds, rereading with the insights gathered from prev ious readings highlights the most impactful stories and their t hemes b e c o m e clearer. Th i s p rocess is a persona l sea r ch by the researcher w h o u s e s intuition, reason ing , theory, a s well a s previous knowledge and exper ience to il luminate the journey. Wander ing in the waste lands on a foggy day looking for s igns that point to a path is the metaphor that best desc r ibes the p rocess . The path b e c o m e s c learer with e a c h p a s s a g e through the text until no new s igns or insights ar ise and the path is clearly v is ible. Us ing stories told in peoples ' own 81 words and being able to consult the co-researchers themse l ves about the analys is se rves to ground the ideas in the reality of their l ived exper ience. Narrative research: Discovery through storytelling Narrative is def ined as a " . . .d iscourse, or an examp le of it, des igned to represent a connec ted succes s i on of happen ings" and narrative research is "...any study that u ses or ana l yzes narrative materials" (Lieblich et al . , 1998, p.2). A personal narrative . . . imposes an order on life events and " represents the most internally consistent interpretation of presently understood past, exper ienced present, and anticipated future at that t ime" (Cohler, 1982). (Mathieson & Barrie, 1998, p.581) Us ing narratives deve loped in interviews creates a dia logue between the vo ice of the researcher who constructs the report of their research and the vo ice of the co-researchers telling their stories. "Commi tment to a dialogic methodology. . . impl ies the representat ion of actors ' own narrated l ives ( G u b a & L incoln, 1994, p.110). Narrat ive inquiry can be used to provide express ion to the unheard vo i ces and give a more in-depth understanding of discriminated-against minorities. Feminists and post-colonial critics argue for "...the p resence of vo i ces of w o m e n , people of colour, and other opp ressed people in the studies that so often make them the object of scrutiny (Coffey & Atk inson, 1996, p.79). The impact of a story, told by those who are used to being s i lenced, al lows the reader/listener a c c e s s to both the knowledge of the factors of oppress ion and the feel ings that are genera ted from its exper ience . The result for the reader/listener is a deeper understanding of the narrator's situation. Th is understanding is not a s easi ly conveyed with the words of a researcher who had not had similar exper iences . Us ing persona l narratives m o v e s research further away from the reduction of human lives to objects and statistics of scientific p rocesses . T h e s e p roces se s often exc lude humaniz ing e lements and impose an unquest ioned master narrative a s the only legitimate vo ice of truth. 82 Master narratives are der ived from "...tradition...and they hold the narrator to culturally g iven s tandards , to taken-for-granted notions of what is good and what is wrong" (Talbot, B ibace , Bokhour , & Bamberg , 1996, p.243) Misch ler (1995) def ines master narratives with a more critical view. Master narratives define rights and duties and incorporate the va lues of dominant soc ia l and political groups. Their unexamined taken-for-granted assumpt ions about how the world is and ought to be concea l patterns of dominance and submiss ion . L ike all narratives, these are select ive representat ions, excluding exper iences and v iews of s o m e sectors of society while including and privileging others. Their legitimating function may be resisted and subverted by counternarrat ives reflecting these exc luded perspect ives . (P.114) This research brings out exc luded perspect ives in the narratives of res istance to the dominant d i scourse of psychiatry. It d o e s at the s a m e time reveal the patterns of dominance and submiss ion found in the mental health sys tem. T h e s e narratives are a lso select ive in their representat ion, although from their standpoint consumer/surv ivors have a broader v iew than mental health professionals . Essent ia l i sm occurs when a point of v iew or belief is promoted a s representing s o m e absolute truth, or a theory is s e e n a s universally appl icable. Essent ia l i sm is a problem for those who wish to honour differing perspect ives and relative v iews. This is avo ided when researchers listen carefully to peoples ' vo i ces and the perspect ives that ar ise from their respect ive locations without granting any one story the position of a universal truth. A l though there are many individual perspect ives , subgroups of people, jo ined by s o m e thread of c o m m o n background or exper ience , tell similar stories which have c o m m o n themes . F rom these themes , which can be against a c o m m o n injustice or for a yet-unmanifested goal , stories c a n be co-constructed. The affirmation of va lues which are held 'universal ly ' d o e s not mean that there are universal theor ies about how people 's l ives are l ived or should be lived. 83 Group narratives b e c o m e the glue joining the people involved together. Of course , when a story b e c o m e s one for many, individual details, incons is tenc ies and incongruent v iews are smoothed over or not represented. It is imposs ib le to present e a ch individual nuance and perspect ive when attempting to address i ssues of c o m m o n concern . Narrative research , giving people a p lace to express themse l ves and tell their stories, helps bring context and portrays lives a s they are lived into research which is a l so trying to give express ion to the c o m m o n conce rns of the group they identify with. The p rocess of narrative analys is requires the researcher to stand in the s h o e s of the interviewee a s well a s reflect on their own perspect ive. Narrative inquiry is an interactive p rocess where the researcher al lows him/herself to be affected by the stories and to b e c o m e sensit ive to the narrator's vo ice and mean ing . Narrat ive analys is involves "...dialogical listening (Bakhtin, 1981) to three voices. . . : the voice of the narrator...; the theoretical framework... ; and a reflexive monitoring of the act of reading and interpretation" (Lieblich et a l . , 1998, p.10) Be ing reflexive is not only reflecting on the material being interpreted but a l so being aware of one ' s own reaction to the ideas being deve loped , one ' s own understanding of the theory used and the literature read, one 's life exper ience and the effect that all these have on the interpretation. A point to note is that the story told in an interview is like a snapshot of a person at a place and t ime; stories change and deve lop , reflecting the ever chang ing relationships, identities and purposes of the people who tell them. With this limitation in mind, stories can still provide researchers with understanding about the narrative both a s representing the life of a 'real and historical ' person as well as a narrative construct ion. ". . .Narratives have both a reconstruct ive and cohe rence function, which Mischler refers to a s the "narrativization of identity fo rmat ion " " (Mathieson & Barrie, 1998, p.581). S o m e researchers " . . .advocate that personal narratives, in both facets of form and content, are, people 's identities" 84 (Lieblich et al . , 1998, p.7). Denz in (1994) a lso s a y s that narrative methods of research ". . .seek a morally informed socia l crit icism, a sac red vers ion of sc i ence which is humane , car ing, holistic and action b a s e d " (p.511). The stories that 'sick' people tell. The interaction of patients with the medica l sys tem accounts for their personal exper iences , and the soc ia l organization of their world, outside and within the context of medica l institutions. Pat ients begin to think of themse l ves as changed when they are treated differently after becoming ill. "Narrat ive accounts al low the ill the opportunity to examine a life t ransformed by i l lness" (Mathieson & Barrie, 1998, p.582). W h e n people b e c o m e ill their identity is cha l lenged, if not altered, and storytelling is a way to renegotiate this identity. Many patients exper ience difficulties in deal ing with mental health profess ionals and this may lead to unsatisfactory working relationships. Math ieson and Barrie (1998) acknowledge that negotiating one ' s identity with health ca re providers is a cont inuous struggle, a n d that the story about the distress that the struggle creates may not be easi ly constructed or l istened to by others. Menta l health profess ionals who use the medica l mode l with its reductionist methods often neglect to a c c e s s the v iews and feel ings of their cl ients while mak ing treatment dec is ions . The position of the patient is s u c h that they feel obl iged to be grateful for whatever ass i s tance they receive and therefore are ambivalent to compla in about their lack of input. He id igger (In Polk inghorne, 1991) p roposed the v iew that there are only two possibil it ies in life; two ways to construct a self-identity. O n e cho ice is to be the author of one ' s own story, the other cho ice is to follow s o m e o n e e lse 's script. Self-authorship occurs when "...I a s s u m e responsibil ity for my life plot and for undertaking those dec is ions and act ions that further this plot" (p. 145). The narratives which people construct c an a lso al low them to adapt to adversity, "...to repair and make meaningful disruptions and discontinuit ies in deve lopment " (Mischler, 1991 , p.105). 85 T h e construct ion of a personal myth is sa id by s o m e to be essent ia l to mental health, with myths providing a s e n s e of self-identity a s well a s s c h e m e s for deal ing with situations and relationships. "A myth...is a story having the power to provide life with meaning-that is a self-narrative" (Polkinghorne, 1991, p.145). Narrative analysis: What does the story tell? Narrative research u ses a methodology that attempts to honour the co-researchers ' vo ices of exper ience . Narrative analys is of the text of the transcripts c an uncover stories related to the co-researchers ' exper iences with psychiatric se rv i ces and from the recovery p rocess . There are many ways of analyz ing narratives, focus ing either on their content, their form, how the story is told, the context of how the stories fit into texts or transcripts of interviews and how the story i l luminates the relationship between co-researcher and interviewer. S o m e researchers use a phenomenolog ica l s tance in representing what a person says at face va lue, respect ing the story a s it is told. Others use theoretical assumpt ions to focus on and look for what underl ies the narrative, the hidden and unconsc ious , what is exc luded and contradictory (Lieblich et al . , 1998). Fo r this research , I take a phenomenolog ica l s tand a s the exper ience of people w h o have rece ived a psychiatric d iagnos is is full of their stories being examined and interpreted by profess ionals with the intent of showing underlying pathologies. The interpretation by myself a s the researcher , which m o v e s beyond the co-researchers ' own construct ion, is from the immers ion in and investigation of all the stories, the knowledge deve loped from readings and informed by theory, as well a s from personal exper ience . "We too are storytellers...we construct the story and its meaning. . .The vers ion we hear is s h a p e d by both the content of its telling and the history of earlier retellings" (Mischler, 1995, p.118). W h e n we hear or read peoples ' stories, the mean ings behind their exper iences are not immediately avai lable. The recounting of the story; the manner in which it is told; what is 86 inc luded and what is left out; how it is structured from beginning, through the middle and to the end , all work together to reveal its re levance to the mean ing behind its telling. Somet imes , a s a person tells a story, the listener, at a certain t ime after enough information has been transmitted, will 'get the point' and will feel that they understand or can relate the story to their own exper ience . Other t imes the story n e e d s to be d igested a n d mul led ove r after its telling before its s ignif icance is ga ined. Much of the meaning of the exper ience related in a narrative is revea led in the structure of its compos i t ion . Who, what where, when, and why. The structure of narratives inc ludes story e lements such as the time, place, plot, and character . The place and time create the experiential quality; the s c e n e is where the action occurs ; characters are deve loped in relation to culture and socia l context; a n d the plot is p laced in a structure of past, present and future t ime. T h e s e t imes are related to the "...three critical d imens ions of human exper ience-s ign i f i cance , va lue, intent ion— and therefore of narrative writing" (Clandinin & Connel ly , 1994). The mode l of narrative ana lys is u sed in this current research is taken from Misch ler ' s (1995) typology. " Labov and Wale tzky (1967) specif ied the structure of a fully deve loped narrative as consist ing of six components : "Abstract, Orientation, Compl icat ing Act ion, Eva luat ion, Reso lut ion , and C o d a " (p.93). T h e Abstract s u m m a r i z e s points of the story; in the Orientation, the t ime, place, and characters are set out; the Compl icat ing Act ion is the main narrative s e q u e n c e or body of the story; the Evaluat ion is def ined a s "...that part of the narrative that revea ls the attitude of the narrator towards the narrative by emphas iz ing the relative importance of s o m e narrative units as compa red to others" (Labov & Waletzky, 1997, p.32); the Resolut ion is the ou tcome or resolving of conflicts at the end of the narrative s equence ; and the C o d a encapsu la tes the exper ience and/or relates it back to present c i r cumstances . Not all the e lements need to be present to create an interesting narrative. 87 Labov and Wale tzky (1997) have deve loped this mode l a s the most comple te but s implest structure of a narrative from their years of studying personal exper ience as told by English-speak ing people. They conjecture that structures of stories may differ in other l anguages and cultures. A l though stories told in other forms have a validity of their own in descr ib ing people 's exper ience , this structure w a s c h o s e n because it d o e s have an impact precisely f rom having most of the e lements of a complete story present. Us ing the mode l deve loped by Labov and Waletsky , a complete story is identified from the transcript of an interview, or is constructed from e lements scattered throughout the d iscourse which together c o m p o s e a core narrative,"...a s e q u e n c e of events which exemplify the main point of the account" (O'Neil l , 1995, p.1). The narratives bring out points of importance which reveal the narrators' self-identity; the t raumas they have lived through; their exper ience of power in relationships with care providers and psychiatric institutions; their acts of res istance to marginal izat ion and st igmatizat ion; and the d r e a m s a n d des i res which motivate their recovery p rocess a s well a s impel the express ion of their ' vo ices of exper ience ' . Pulling the ideas and issues out of the stories. T h e i s sues from the individual interviews brought to the focus groups were found through a p rocess of analys is by reading and rereading the transcripts until no new i s sues a rose . The focus group interviews were ana lyzed both using d iscourse analys is for mean ing statements and categorizat ion to bring out c o m m o n themes , i s sues and ideas for programs. Ethics: Striving for Harmlessness R e s e a r c h which explores people 's l ives and exper iences has the ethical responsibil ity of honour ing their perspect ive. Oppress ion and exploitation occur when this responsibil ity is not acknowledged and taken on . T h o s e from groups that are left out of any consultat ion p rocess for research do not get an opportunity to say whether research is harmful or not to their lives. They may be misled when a s k e d for consent ; this may not be intentional, but due to a lack of 88 attention to the difference in the va lues between the researchers and the subjects of their research . T h e activists in the consumer/surv ivor movemen t have m a d e many c a m p a i g n s to try to ensure that research with consumer/surv ivors is in the best interests of the co-researchers . Us ing participatory action research to the greatest extent possib le , bringing out the narratives told by the co-researchers and maintaining a strong connect ion with the population researched , becoming involved a s an ally, are all methods which attempt to bring the research as c lose to the group 's a ims a s poss ib le . R e s e a r c h from the standpoint of s o m e o n e who has sha red exper iences of the population researched can increase the likelihood of an interpretation which honours the co-researchers. However , the individual 's motivation for this type of research is a lso a determinant of its integrity. I need to be aware of my own p rocesses which motivate me to work with marginal ized people and a lso of the dangers of maintaining d is tance by creating difference. Without this reflexivity, I could v iew myself a s apart, untouched and a disinterested observer , researching with altruistic a ims . This altruism is of course separate from the self-interest of acquir ing a masters degree leading to a career with a good wage , soc ia l status and power. Self-knowledge is an insurance against ethical errors f rom unconsc ious or incorrect motivations. By returning my interpretations to the co-researchers , giving them the stories of their l ives on paper, I w a s able to s e e the effect this had on them. M u c h of what w a s told w a s difficult for them to exper ience and to relive. W h e n they read about their l ives s o m e of what they told was too painful and they a s k e d me to leave it out. E v e n when s o m e of the co-researchers said that they did not mind what I had written I could s e e there were sect ions which c a u s e d them pain. If I had been too earnest and righteous about the importance of the research and the need to include p a s s a g e s which were painful for the co-researchers I would not have a s k e d for their f eedback a n d would therefore not have s e e n the potential harm. I w a s m o v e d by how vulnerable this population was and how brave they we re to d isc lose their pain and humiliation. 89 E v e n with confidentiality a ssu red there c an be harm from interpretations which either diminish the importance of the shar ing or lay out material which is too raw. There are oc ca s i ons when material is inc luded, not be cause of its s ignif icance for understanding, but a s a form of voyeur i sm or sensat iona l i sm. The researcher can be just as guilty of victimization as a mental health professional caught in countertransference who unconsc ious ly takes on the role of perpetrator of abuse . The consent forms, the promise of confidentiality, hav ing s o m e o n e they could phone if needing to compla in or to check my credentials, the care in keeping materials unidentified and secure , he lped to reassure the co-researchers of their safety, understandably an important concern for them. Quality and Rigor: Measuring Integrity Interpretations are often criticized when they do not adhere to traditional or positivist external s tandards of evaluat ion. The criticism about the lack of internal or external validity, reliability, and objectivity promoted by positivists is rejected by others with their observat ion that " . . .knowledge produced under the gu ise of objective s c i ence is too often used for the purposes of soc ia l control" (Denzin, 1994, p.511). The objectivity sought by positivists, not only is imposs ib le to ach ieve , but c an actually be an impediment to understanding marginal ized people. The nature of interpretive work is that it is not subject to the s a m e rules and condit ions a s quantitative research. The evaluat ion of the quality of the work has different criteria. The terms used for quality or validity by s o m e interpretive researchers are trustworthiness, credibility, authenticity, re levance and g o o d n e s s (Lieblich et al . , 1998). Focus ing on trustworthiness rather than truth d i sp laces validation from its traditional location in a presumably objective, non-reactive, and neutral reality and m o v e s it to the soc ia l wo r l d-a world constructed in and through d iscourse , and act ions, through praxis" (p. 172) 90 Credibility and authenticity are found in the narrative approach which tells stories in the words that the co-researchers tell them. For the research to be led from the standpoint of a consumer/surv ivor inc reases trustworthiness a s well a s credibility and helps to assu re that the a ims of the research are acceptab le to those being researched . The training in research from the schoo l of soc ia l work and the support of an expert researcher give credibility and thus legitimacy to the research . By returning the ana l yses to my adv isors for their input there can be c h e c k s for errors in interpretation which their expert ise c an identify. The criticism that my involvement with the group leads to b iases in the research is valid but I do not s e e it a s a problem or error a s it actually ba lances out to be a benefit for this type of research . My involvement in the group to be resea rched is akin to an ethnographic research where immers ion is part of gaining understanding; without it errors of v iew may occur . It has been a cont inuous, consc ious effort to separate or dist inguish myself a s both an individual who has recovered from a psychiatr ic d iagnos is and a s a researcher and student of soc ia l work. The nature of stigmatization and discr imination, both external and internal, requires that I make a consc ious effort to be self-aware a s well as being aware of the stereotypes and myths that others hold. I have learned to be reflexive in the process of identifying myself as an ex-patient, working with mental health profess ionals in a pract icum, and joining in work with the S H G . This reflexivity has in fact been the source of many personal insights about identity and the nature of oppress ion in society and the psychiatric sys tem. The t ransparency of my standpoint, b iases , and reflexivity, that is, the use of myself a s an object of research , a s well a s the t ransparency of the p rocess of data collection and analys is are all important for the quality of this research . There is a pragmatic validity or re levance in participatory action and narrative research . P l ans to use this study a s the bas is for funding proposa ls and to inform the deve lopment of programs for the S H G support the re levance of this research project. The narrative approach 91 gives express ion to the ' vo i ces ' of marginal ized people and m a k e s their perspect ive relevant to the conce rns of policy makers , funders , and other researchers . To effect c h a n g e s to socia l work practice requires that this research be va lued and promoted. Writing articles for journals and presenting at confe rences c an help this a im. A p rocess of consensua l va l idat ion-namely , shar ing one ' s v iews and conc lus ions and mak ing s e n s e in the eyes of a community of researchers and interested informed individuals--is the highest s ignif icance in narrative inquiry. (Lieblich et al . , 1998, p.173) The final criteria of goodness , a s proposed by Liebl ich, Tuba l-Mashiach, & Zi lber (1998), reflects back to the purposes behind focus ing on the exper iences , vo i ces and v iews of individuals and groups. With the purpose to give express ion to those who are s i lenced or who have no venue to share their perspect ive , the research involves the critical aspec t of promoting socia l just ice in a democrat ic society. If we do not e x p o s e the oppress ion and suffering of marginal ized people, a s soc ia l workers we b e c o m e part of the problem and effectively are oppresso rs in our own right. G o o d n e s s c an be a base for soc ia l work practice and research , ensur ing that we be allies and empower ing agents , engag ing in the struggle for our own liberation from being oppressed or oppressor a s well as on the behalf of others less advan taged . The Dalai L a m a (Gyatso, 1984) ta lks about the need for a good heart and universal responsibil ity while engag ing in socia l act ion. H e descr ibes the work of compass iona te action in the following pas sage . I feel that the e s s e n c e of all spiritual life is your emot ion, your attitude toward others. O n c e you have pure and s incere motivation, all the rest follows. Y o u can deve lop this right attitude toward others on the bas is of k indness , love, and respect, and on the clear realization of the o n e n e s s of all human beings. This is important be cause others benefit by this motivation a s much a s anything we do. Then with a pure heart you can carry on 92 your work.. .and your profess ion b e c o m e s a real instrument to help the human communi ty . (P.44) The issues around generalizabilitv. In qualitative studies c la ims of general izat ion to larger populat ions than those samp led are not usually made . The smal l samp le s ize is one factor, but the purpose and a ims of this type of research have more to do with the depth than b roadness of knowledge. "...The va lue of a qualitative study may depend on its lack of external generalizabil ity, in the s e n s e of being representative of a larger populat ion" (Maxwell , 1996, p.97). For example , this current research a ims to specif ical ly bring out the perspect ives of the m e m b e r s of the Self-Help G roup . Th is group w ishes to deve lop programs which will add ress the conce rns of its members . They recognize that there are many variat ions in mental health and a single approach will not cove r the needs of all those who seek help. Th is is precisely why the m e m b e r s of the Self-Help G roup are attempting to set out their own criteria for what will a id their recovery in order to deve lop the types of serv i ces that are not avai lable within the traditional mental health sys tem. There is a distinction m a d e between internal and external generalizability. Internal generalizabil ity "...refers to the generalizability of a conc lus ion within the setting or group studied.. . " (Maxwel l , 1996, p.97). Internal generalizabil ity is a relevant i ssue in qualitative studies. In this study, the use of focus groups and the group examinat ion and d i scuss ion of the i ssues raised in the individual interviews c an be sa id to establ ish sol id ground for internal generalizability. Other ideas, such as the generalizabil ity of theory deve loped in a study or the corroborat ion from other studies lend s o m e credibility to genera l iz ing, but they do not "...permit the kinds of precise extrapolat ions of results to def ined populat ions that probability sampl ing does " (p.98). Mental health is a vast and comp lex a rea with many different v iewpoints. It will take many of these types of research studies to begin to form a holistic perspect ive ; one that takes into account all the standpoints of the individuals and groups involved. 93 Conclusion Narrative research is an exploratory inquiry which can reveal aspec ts and the mean ings of people 's l ives found in the stories that they tell in the context of their "lived exper ience ' . Co-researchers b e c o m e 'witnesses ' to the test imony of their lived exper ience and the impact of this test imony impels the researcher to respect this vo ice of "embodied ' knowledge. In this p rocess the researcher honours the co-researcher and the group they belong to in pursuit of understanding and/or justice on the bas is of the universally held va lues of human rights and f reedoms . T h e use of participatory action research is sugges ted for research with self-help groups and those who are often marginal ized in traditional research (Rogers & Pa lmers-Erbs , 1994). The input of the member s of the S H G inc reases the credibility of the study and the use of the research to further the group's deve lopment g ives it re levance. T h e s e two approaches to research ensure that the method is consistent with both the theories it is ba sed on , the a ims of soc ia l just ice and the promotion of recovery-oriented mental health serv ices . The va lues of soc ia l work are a lso well represented through this research methodology. Moreover , the p rocess involved in conduct ing this type of research leads to a deeper understanding of how research can be an emancipatory activity for both researchers and co-researchers . It is a priviledge as a researcher to be a "witness' to the test imony of those who have been opp re s sed and s i lenced; to witness their courage and honesty. It is a lso instructive to s ee how the self-authorship of narratives has the power to deconstruct psychiatric identities and to reconstruct identities ba sed on recovery and the f reedom from oppress ion . 94 PART TWO: THE FINDINGS Chapter Five Interview with Jane J ane is a w o m a n in her fifties who immigrated from Scot land as a child. S h e has for the last six years been employed in peer support of consumer/surv ivors . The interview began with a chronology of all her exper iences with the psychiatr ic sys tem. After having exper ienced v io lence in relationships J ane w a s in and out of psychiatr ic hospitals and wards from 1969 to 1977 b e c a u s e of her depress ion and suic ide attempts. In the first narrative J ane tells the story of a suic ide attempt while in an abus ive relationship and the treatment which she rece ived. "It seems that what is going on in your life has no relevance" Orientation: I went to Montreal for a year out. Abstract: A n d then I got involved with a really violent man.. . that led m e a coup le of years later to...try su ic ide aga in . A n d this time...he w a s really violent to me... Complicating Action: O n e night we were out for a walk and he w a s going to get violent with m e aga in , I knew that. A n d two pol iceman were there, and so I a s k e d the pol icemen to take him away and then I went back to the apartment and I tried to kill myself. A n d I had been planning it actually ' cause I felt like I really was living in hell. S o I went to the Hotel Dieu in Montreal , first to the regular ward...they gave me surgery..., (I had put a knife in my s tomach) to s e e if there w a s any internal damage . A n d then they put me in the psych ward . A n d then...this psychiatrist was ask ing me about sex.. . and he a s k e d me...why I felt s o guilty about sex. A n d I just said that I didn't know that I was.. . Evaluation: I probably w a s but at the s a m e t ime there were other things going on in my life, like this guy pounding me. But to m e the psychiatrist w a s like an agent of the state Resolution: and I just dec ided that I couldn't talk to him, I couldn't trust him at all. (16-41) Coda: . . .Nobody wants to find out what 's going on in your life. It s e e m s that what is going on in your life has no re levance to your being in a bad place. (236-239) J ane found that s h e did not get the help s h e needed to recover her mental health in mainst ream psychiatry. In fact she felt a l ienated and diminished by mental health professionals . Not s o m e b o d y aga in who thinks that they're perfect and everybody e l se is s c rewed up...I don't b loom in those c i r cumstances to say the least...(401-403) I didn't feel any compass i on 95 coming from them (psychiatrists) to me , who w a s really struggling and... in pain. I didn't feel any compass i on at all...(4-411) In the s e c o n d narrative J ane graphically desc r ibes the oppress i ve nature of her relationship with one male psychiatrist and the anger she fee ls at the life she could have had . "I could have had a different kind of life if I'd got some help earlier..." Orientation:...I spent a whole year of my life at Riverview... Abstract: ...any kind of contact with the psychiatric sys tem really s ca red me. S o I w a s a lways quiet, and very obedient, compliant. (108-110) Complicating Action: I would go and s e e this one psychiatrist at V G H . I would c ross this huge room, with a big carpet, and here is this normal , white male with his three piece suit behind his desk. . .and s o I mean , Resolution: I would shrink a s I wa lked ac ross . Evaluation: A n d s o I thought that the word shrink is really, like, apropos . (251-259) Be cause , I a lways felt that power differential really strongly. They can lock the door and throw away the key right now... just one doctor...( 392-395) Coda: A n d I could have had a different kind of life if I'd got s o m e help earlier. A n d I have a lot of anger, I really have a lot of anger about that. (195-198) The trust needed for heal ing relationships w a s not fostered by the mental health workers s h e encountered . ...I had learned in the psychiatric system... just all these different people who wouldn't talk to me, and who patronized me , and who ignored me, and who belittled me . A n d I didn't want to tell them everything. I just couldn't. (278-282) S h e a lso descr ibes how she felt she was s u p p o s e d to change herself to match the convent ional ideas of what it m e a n s to be a w o m a n . I wasn't a l lowed to ask them anything. I wasn't a l lowed to say anything, I w a s just s u p p o s e d to be doci le . A n d I a lways they felt that they wanted me to end up in Coqui t lam with a charge card. . . I didn't want that, I wanted to study...travel and. . .have this bohemian life...And...I really felt like they were trying to impose their ideas of what a w o m a n should be onto me. (447-455) In fact, a s the therapist s h e went to at the drug and a lcohol treatment centre told her, 96 not only did I have to recover f rom the problems that led me into the psychiatr ic sys tem, but I had to recover f rom the treatment I got in there...(200-204) A n d in that system...the thing is your expectat ions b e c o m e so low. (646-647) J ane m a n a g e d in the communi ty f rom '77 to '91 without any hospital izations, "...by being very isolated, not knowing anybody, hav ing really low expectat ions of what life cou ld be like for me" (146-148). J ane ' s self-identity was changed by femin ism. "...I read a book . . the Fema le Eunuch . I s topped trying suic ide after that..." (69-72). Her revelation at d iscover ing feminist ideas w a s descr ibed as , " . . . it was like coming out of a fog.. .and see ing things written down . It was . . . such a relief..." (494-496). J ane ' s recovery began when she took control and sought help that s h e could trust. S h e says that in a way s h e was only able to get help s h e could a c c e s s because s h e had s o many other problems bes ides her psychiatr ic d iagnos is . A n d I really bel ieve it's because. . . through my var ious problems, I've been able to a c c e s s s o m e real meaningful help. (384-386) J a n e found help through attending mutual-aid groups for battered w o m e n , adult chi ldren of a lcohol ics ( A C O A ) and those with subs tance a b u s e i s sues (NA) where "...it w a s really as tounding for m e to find out that other people were struggl ing" (266-267). S h e a lso started to s e e a drug and a lcohol counse l lor w h o m she w a s able to slowly begin to trust b e c a u s e s h e w a s an addict . . .somebody who knows what it's like, and respects my var ious st ruggles . . .because s h e involved in her own.. . . .she doesn ' t patronize. . .she doesn ' t have a lot of power over me. The final turn around was when s h e began her present job. "...my life has really, really, really changed, in the past ten years." Orientation: ...This w a s in ' 91 , '92 actually be cause I had c o m e out of R iverv iew ...my parents were a lways after m e the day I would c o m e out of the hospital...to go look for a job...(328-334) Complicating Action: But this t ime I dec ided that I wasn't going to do that, and I moved into the (Mental Patients Assoc ia t ion) house . A n d so for a year I did nothing but go to A C O A , and NA , 97 and the a lcohol and drug counse lor , which w a s really, really hard. A n d then I w a s starting to look around for work and I appl ied for a job...didn't get it and then I just heard about this job at the Self He lp Group, I didn't e ven know what it was , and I appl ied for it. Abstract: A n d I thought, wel l , if I don't get this job, I'm leaving C a n a d a . B e c a u s e I really felt like I had tried, you know. I have a good educat ion. I'm willing to work hard. I know that my personal prob lems had really prevented m e from doing a lot of stuff. But I w a s just... getting really fed up with it. Resolution: A n d then 1 got this job, it landed in my lap, like I can't bel ieve it, you know. Evaluation: My job has been really heal ing for me, it's really politicized me a lot, you know. Urn, I feel really good about it. A n d a lso it enab les me to do, urn, to do nice things for myself. (338-358) A n d so , you know, materially my job has just been like (wonderful)... Coda: It's just like...my life has really, really, really changed , in the past ten years. Especial ly. . . in the last s ix and a bit e ve r s ince I got my job...it's really changed . (364-369) S o m e of the nice things J ane did for herself b e c a u s e of her paid employment were to buy vitamins, go to a yoga c lass , live in a decent apartment, and be able "...to buy a cup of coffee, and take the bus, not like either/or, like I l ived for a long t ime" (360-362) She ' s been able to travel to Britain and South A m e r i c a and to make payments on a piece of land she sha res with s o m e fr iends. J ane knows the importance of keeping up with the body work and the counsel l ing which have helped her recover. I have m u c h more love and respect for mysel f . . .And its growing. B e c a u s e I know for me...I have to keep working on my issues . B e c a u s e it's a way that I get to know who I a m . That, to me, is completely miraculous... (542-547) In her work J ane is helping to set up programs of peer support. S h e meets with many consumer/surv ivors and adv i ses them on the se rv i ces and resources which they can a c ces s . S h e is a l so networking with women ' s groups , sympathet ic mental health profess ionals and researchers . 98 J a n e s e e s people who say that they are lucky that they found help in the mental health sys tem. ...I look at people and they say they were lucky because they got whatever kind of help. But then I s e e that...it's fifteen years later, and they are still on medicat ion and they're still unemployed and they're still...going and sitting on s o m e commit tees that don't m a k e any kind of change . A n d then they tell m e they are lucky! (637-645) J ane s p e a k s of how tragic it is to s ee people who have been thirty years at R iverv iew and how many have been p laced in the community but are still living institutionalized l ives. If you are in that sys tem, a lot of people feel really, really, totally margina l ized, you know, totally marginal ized. A n d they go to these ghettos of drop-in centres and c lubhouses and , you know, nothing changes , except things get worse for them. (694-698) S h e s e e s that many people have potential which could be deve loped and which hasn't been in the mental health sys tem. ...But there 've been other things going on in our l ives bes ides the fact that we ended up in the psych ward. And. . .a lot of us around the S H G are really highly educa ted , have a lot of other skil ls, and we have been , just kind of like been thrown on the garbage heap. (801-806) By support ing the Self Help Group , J ane is fighting the marginal ization of st igmatized people who without hope are merely exist ing. B e c a u s e people are so desperate , you know, that someth ing has to change , someth ing has to change , a lot has to change . (818-820) The peer support group acts a s a beacon of light to people who have been told they have a limited future. J ane says the a im of the group is to "...offer hope to people , to offer recovery, to offer...that you can get well." Discussion In the first narrative, J ane descr ibes her interaction with a psychiatrist w h o a s k s quest ions which to her are irrelevant to her "...living in hell" (27) with an abus ive partner. S h e dec ides then that she c an not trust psychiatrists, ". . .agents of the state...", and this lack of trust cont inues throughout her exper iences in the mental health sys tem. J ane , by her dec is ion not to talk, resists the attempt to b lame her for her abuse and to s ee that her suic ide attempts are from 99 inner psychologica l problems rather than from the t rauma c a u s e d by the terrible c i r cumstances of her life. J ane ' s exper ience of the oppress i ve nature of psychiatry is succinct ly s u m m e d up in her s e cond narrative. The power differential that s h e felt is graphical ly shown in her description of walking a c ross a psychiatrist 's office. Phys ica l sett ings c an contribute to the d i sempowerment of opp ressed people. The mental health care t e am at which I w a s p laced for a pract icum, had a long corridor which I c an now imagine contributes to the client's feel ing smal ler and smal ler a s they wa lked to their appointments. J ane ' s anger is understandable ; for twenty years s h e w a s "obedient" and " comp l i an t " (110) but unable to find the help that s h e needed . Both Valer ie (later interview) and J ane exp ressed their anger at the inappropriate treatment they rece ived, that no one l istened to them, and the fear they had because of the power that the profess ionals and other mental health workers held over them. Both these w o m e n reacted to the psychiatr ic sys tem a s if it w a s just another abus i ve situation. If they were remained obedient and compl iant they would not be attacked. Unfortunately, the sys tem often fulfills many people 's expectat ions of cont inued a b u s e with its oppress i ve , coerc ive methods. The contrast in the types of help J ane received is clearly apparent between the s e c o n d and third narratives. Meaningful help for a w o m a n who has been traumat ized by v io lence at the hands of men , is not a man in a suit behind a desk who carr ies the power to "...lock the door and throw away the key..."(395). He r exper ience as a w o m a n who had been battered, which precipitated her su ic ide attempts, w a s clarified and put into perspect ive by the work of women ' s liberation activists. S h e was rel ieved to read that it wasn' t just her but that many w o m e n have been a b u s e d at the hands of men and opp ressed in a patriarchal society. 100 B e c a u s e of the t raumas she rece ived from men J ane cannot trust male psychiatr ists who a lso have power over her, and will not, cannot d i s cuss her abuse with them. It then b e c o m e s important for J ane ' s recovery to receive counse l ing from a w o m a n who a lso, " . . .knows what it's like.." who has no "...power over me..." and , "...who is involved in her own s t rugg l e s " (398-399) Looking back, J ane a lso s a w how psychiatry tried to exert socia l control in their attempts to have her b e c o m e the ' w o m a n ' that a patriarchal society w ished her to be, charge card and all , d iscount ing her des i res to travel and lead a ' bohemian ' life. J ane ' s work is to counter people being "...thrown o n the ga rbage heap" (806) when they receive a psychiatric d iagnos is . Instead of being the was tes of society, a s Valer ie vo iced , they have many skil ls, abilities and potential to be deve loped which can contribute to their recovery and a p lace in society. J ane has not only recovered significantly, "...I have friends...I go out...it's wonderful , I have fun.. ." (375-377), but she has moved into self-actualization. "...I a m 56 and I feel better than I have in my life before" (383). J ane ' s act ive life full of mean ing and her ability to know when to work on her i s sues make her an ideal role mode l for consumer/surv ivors. 101 Chapter 6 interview with James J a m e s w a s born in the United States near the Canad i an border to an Ojibway mother and a father of G e r m a n heritage. H e exiled himself to C a n a d a to e s c a p e being drafted into the V i e tnamese war and made it permanent with his marr iage to a Mani toba w o m a n of First Nat ions ' ancestry. He had three chi ldren, two girls and a boy. J a m e s is a very active m a n , attending drop-in centres, visiting many in the mental health community , volunteering for the Self Help G roup on the board of directors and working in peer support. T h e first narrative desc r ibes J a m e ' s initial t rauma. "...I'm a Self-made man." Orientation: My life was ruined right from the beginning. Abstract: My life's been cursed and d o o m e d , the whole d a m n thing. Complicating Action. My mother committed suic ide due to rac ism. A n d I w a s six years old. (627-632) ...but my grandmother knew... that Indians were trash and he had brought home trash and s h e s c r eeched and sc reeched and pushed her to suicide... (656-659) A n d I g u e s s my father s lumped off in an alcohol ic depress ion and left me to my grandmother and my aunt and uncle. Resolution: S o I pulled myself together, O K . (633) Coda: O K . S o you know I'm a self-made man , O K . Evaluation: Society isn't p leased with that and I've been marginal ized because of that, but I'm a self-made man . (637-639) J a m e s s ay s he has been marginal ized precisely be cause he is not one of t h o s e , " . . .persons who do exactly what they're told...or follow the leader" (41-42). He has fol lowed careers on the edge of society. H e once earned a living by channel ing for those in a meditation group. He a lso identifies with his "...fellow mental health consumers . . . " (134) w h o m he s e e s as having this s a m e level of independence and resultant marginal izat ion. A lot of people in the mental health system.. .have different va lues than the main population...the reasons why s o m e of them are there are they aren't robots or sheep . 102 (34-41) A s far a s I'm concerned. . . if the people who are mental health consumer s are the.. .outsiders, the bad guys , then I'm a bad guy too b e c a u s e they're just like me. (140-143) H is resourcefu lness and ability to maintain independence is admirable . " I'm strong and intelligent, self-taught, self-educated and everything like that, you k n o w " (640-641). I was a lso impressed by his e loquence , knowledge and self-development. "That's (spirituality) has helped a lot.. .And I've s een what meditation and spiritual deve lopment can do for you.. . " (564-566) J a m e s is a man who has avo ided the mental health sys tem for twenty-five years a s he s a y s " because I kind of have a therapist phobia , O K ? " (12) and because of all the things my fr iends who have been in the sys tem have told m e had happened ; stuff like e lect roshock therapy and...the heavy drugs that sch izophren ics have to take. . .and plus my lifestyle tends to be. . .something that would ah , ah , certify me for sure . (17-22) J a m e s talked about his own exper ience with a lmost dying and how he had what was identified a s a manic ep i sode when he real ized he was al ive. So...that w a s when they were going to...transfer me to the psych ward because , like, if you're d e a d , if you're d e a d , you know, and you c o m e back to life, I m e a n , you 've got to be manic , ' cause you're al ive! But that w a s . a real life susta ining, a life chang ing thing there. (183-193) H e sa id that looking back he recogn ized he had exper i enced mental health cha l l enges before. I c an s e e now, I've been a life-long manic and. . .depress ion for sure absolutely, like long, long, long depress ions . (194-195) But J a m e s with his great independence and fear of the psychiatric sys tem had the strength to hold himself together. Both physical ly and. . .psychological ly just...sort of a re-stitched together person.. .both because... I w a s stitched together in.. . surgery. . .And ah.. .and psychological ly , well I sort of stitched myself together for a s long as I could...(110-116) J a m e s regrets not a c cess i ng earlier the help that he could have used . "...I have to admit I made the wrong cho ice . I think just e v en a few tranquil izers.. .would have made a whole lot of difference " (89-90). ...my chi ldren have been raised by a manic depress i ve and they're kind of crazy now too, OK . I had a daughter and two s o n s . . .Especial ly the boy... Y o u s ee if I had had a valium or two a day, a Valium or two a day, I wouldn't have d a m a g e d him b e c a u s e of a bad marriage.. . A bad , incompatible. , marr iage that lasted for 10 long years.(685-695) H e sa id he b e c a m e dep res sed after the end of this marr iage " . . .because it's your whole life, 10 long years is a life...(and) be cause the dad is cut out you k n o w " (697-700). J a m e s a lso talked about being man ic for three months after his s e c o n d marr iage fai led. "Ya , I didn't s l eep for 3 months . That w a s divorce, right?" (103-104). The turning point for him w a s the last t ime he b e c a m e ser iously dep re s sed . At this time he no longer had the resources to maintain his independence . His account of how he finally went for help to the mental health sys tem is found in the following narrative. "I wouldn't be in such a...rough shape, if I had...got some help before." Abstract: A h , be cause of religious beliefs, or. . .phi losophy, or... learning exper iences. . .or life cr ises, I've, ah...actually psychological ly c rushed myself, wel l , ah , at least a dozen t imes. (207-211) Orientation: Man i c depress ion is virtue, all right? But like, you know. . .because when you're dep res sed you tend to reform and discipl ine yourself. (201-205) Plot: We l l for instance even in my latest crisis.. . I wanted to comb ine all the discipl ines, all the discipl ines into one big package , boy. A n d like, ah , o h , wow! ...I had to exerc ise and (controlled) what (I) ate and you know, e ven the littlest things. It w a s really heavy Resolution: and I c racked . H a , ha . I just c racked right up. A n d this t ime too old and too, you know, too poor to do anything e l se but to seek regular doctor therapist. Evaluation: It's just that I really, should've. . .got s o m e help in the past, I really should have got s o m e help because Coda: I wouldn't be in such. . .a rough shape , if I had of got s o m e help before. (217-231) J a m e s has been taking a mood stabil izer for the past year and has found, "...I've actually grown b e c a u s e I w a s g iven s o m e medicat ion to settle down and get a good night's s l e e p " (329-33). He pointed out that now he w a s able to c h o o s e to accept help, he w a s col laborating and taking responsibil ity for his mental health which supported his recovery. It turned out to not be a s awful a s I thought it would because . . . If I had just fallen down like a limp wrist dish rag, and sa id . "Do what you want", well I think it would have been worse . (26-32) 104 Bes ides being angry at himself, he a lso pointed out that, ...for thirty years people have known I've suffered from man ic depress ion. . .My doctor knew...five years ago.. .But nobody has gu ided me or directed me to take it (the medication). (356-360) J a m e s has worked on his body and mind with yoga , tai chi and meditation. H e recently d i scovered nutritional supplements , a part of a weight-lifter's diet, which counteracted the s ide effects of his new medicat ion. His self-therapy a lso inc luded throwing himself into work to pull himself out of depress ion . He has dedicated himself to helping others, is part of peer support at the Self He lp G roup and through another agency doing outreach to R iverv iew Hospita l . J a m e s says that the Self-Help G roup has a lso been central to his recovery. He expla ined that with the use of anti-depressants "...you lose your mental and socia l tactility..." (256), which m e a n s that a person 's judgment is impaired, helping lift depress ion which is usually heavy with negat ive judgment . But he a l so said that ...every last s e c o n d of every day, wak ing or s leep ing, on anti-depressants, I have to be careful of every thing I do . A n d it h a s to be willful, determined, eva luated and everything e lse , be cause either I will just not pay attention and walk out in front of a bus . (272-276) H e warns that depress ion may only be traded for a milder vers ion on anti-depressants, "there's s l eep d e p r e s s i o n s " (299), if the d o s e is too high. I'm really behind the Self He lp G roup because.. . i t really s a v e d my life...(248-249) (The coordinator) told m e to take only half, OK . . . and a half d o s a g e worked just fine...I w a s gonners. . .because.. . I really didn't know what a full d o s a g e would do. (284-289) J a m e s sa id he took one year of psychology at university, and has counse l led others informally with "pop psychology" for many years . F rom his own exper ience and working with people he has c o m e to the following conc lus ions . It appea rs that people really need just to...talk and really talk... ...I find that you have to be an interested participant...an active participant...(152-162) ' C a u s e taking the ball away from s o m e b o d y when they're trying to express their feel ings.. .what their real needs are, that is o n e of the big mis takes in psychology. . . ! know they are trying now...to listen. 105 J a m e s is working in peer support; he visits mental health drop-ins, t akes people out for coffee and listens to them. ...A lot of people will never hit the mental health sys tem if they just could have s o m e b o d y to...talk over their problems for a little bit... (164-174) H e is contributing to the Self-Help G roup by helping them fundra ise and e x p a n d their membersh ip . J a m e s is a role mode l of the power of working for others which in turn helps him in his own recovery. Discussion The first narrative poignantly desc r ibes an image of a strong, sol id m a n , w h o m "...society can't break..." (563) and who va lues extreme independence . H e attributed his ability to survive all the cr ises he exper ienced to the deve lopment of his spirituality. . . .Because to hold out in the f inancial , soc ia l , ah , psychologica l se tbacks I've had...to never c a ve in, you know, that's been amaz ing , that's spiritual deve lopment . O K ? (596-600) J a m e s did avo id being taken under the care of the psychiatr ic sys tem, "I s o m e h o w managed to get out of that..." (56-57) and cont inued to work on the deve lopment of his spirituality after his near death exper ience which he ca l led, "...a real life chang ing thing " (193). Psychiatr ists, s o m e of w h o m only s e e spirituality a s support ive at best and delus ional at worst, could s e e his convers ion from surviving a near death exper ience a s a symptom of psychopathology. Authors in t ranspersona l psychology draw attention to the fact that life threatening exper i ences c a n trigger a reaction which may appea r to be a mental health problem but is in fact a spiritual emergency . It is extremely important for those helping to "agree that the difficulties are not manifestat ions of a d i sease , but of a p rocess that is heal ing and transformative" (Grof & Graf, 1989, p. 194). With the correct gu idance this cr is is c an lead to a spiritual transformation. Th is gu idance can involve bodywork, therapies to help the express ion of emot ions , adv ice f rom spiritual teachers and the support of those who respect the heal ing w i sdom of the transformative p rocess (1989). S o m e cr ises require 24 hour support which is 106 difficult to f ind. Often these people end up in the psychiatr ic sys tem drugged and their potential for transformation b locked. J a m e s has roots in both First Nat ion and G e r m a n heritages which left him with a foot in both groups and a member of none. He is able to work and soc ia l ize well with consumer/surv ivors be cause he identifies with being an outcast. H is position a s outcast, his history of t rauma, and his deve lopment of spirituality have all affected his menta l health. Whe the r he suffers f rom pathology, problems based in soc ia l and e conomi c d isadvantage , discr imination, or f rom a spiritual emergency , J a m e s w ishes to now seek help. The s e c o n d narrative tells how J a m e s b e c a m e involved with psychiatry. He sa id that b e c a u s e he w a s too old and too poor he had no alternative but to s e e k help f rom the mental health sys tem. Alternative or non-conventional therapies are expens i ve and not easi ly a c c e s s e d by consumer/surv ivors . J a m e s has been able to find security with the disability pens ion and relief f rom his depress ion with medicat ion. H e has accep ted the d iagnos is g iven him and bel ieves he will have to take medicat ion for the rest of his life. Howeve r he has c h o s e n this help and fee ls self-efficacy from the cho i ce he made . H e a l so is act ive in creat ing a p lace for himself working with the S H G and in peer support . A quest ion that can be m a d e is, w a s his ins istence on independence honoured and was he less insistently adv i sed to use serv ices , be cause he w a s ma le ? W o m e n ' s exper ience from research , and in this smal l samp le , as J ane relates, "...If you're a woman. . .you are more than twice a s likely to get medicated if you go to your doctor than men are..." This shows that they often receive too much , unwanted treatment. The dif ferences in the type and amount of treatment received by m e n and w o m e n would be another interesting topic to research . Wha t J a m e s has learned in his years of car ing for himself still support his recovery today. H e knows the va lue of body work, appropriate nutrition and supp lements , the worth of meditation 107 and the heal ing powers of work. But especial ly he knows how important it is for his own mental health to m o v e out of worrying about himself into car ing for others. If there 's no one to take care of, why live, why eat, why have a house , why have anything, why have anything...? Right, right? S o that's my big secret, eh ! (834-837) J a m e s , with his des i re to train and work full-time a s a peer counsel lor and using his wealth of knowledge and exper ience, will be invaluable to consumer/surv ivors on their road to recovery. 108 Chapter 7 Interview with Valerie Valer ie is a w o m a n in her forties, w h o both works a s a volunteer and a s a paid part-time employee . S h e began by identifying barriers to her recovery. I think the thing that has been the hindrance for me has been the mental ,health sys tem itself. It has been a big barrier...in my way all the t ime to getting better and to seek ing a c c e s s to getting the kind of help I need to recover f rom, quote , being labelled mentally ill. (11-16) S h e sa id that she rece ived improper d iagnos is and treatment when she first entered the psychiatr ic sys tem and for a long t ime after. I got into more trouble after I was. . .given treatment...! got into all sorts of trouble with al! sorts of difficulties...And...my doctor tells me now that I didn't get proper treatment when I first went in...(I was) misd iagnosed. . .g iven, lots and lots and lots of medicat ion and basical ly neglected. (678-692) S h e told severa l stories of her exper iences with the staff of mental health serv ices . Her stories were about those w h o m she exper ienced as being good , as well a s bad ; those who created barriers and those who he lped c lear the way to her recovery. The first narrative descr ibes s o m e of these workers . " ...Just see what I've been through..." Abstract: P e rhaps the good ones have more c o m p a s s i o n to others, ...kinder than the ones who don't know what they're doing.. . a n d they're just there for the power. I figure they get really twisted out of shape... (99-103) Orientation: A n d another incident that happened at Venture was.. . A n d this has happened dozens , and d o z e n s of t imes with staff. Complicating Action: Is, uh , I had a friend c o m e a n d , uh, visit me at Venture and we went into one of their little rooms.. . just having a conversat ion and this nurse wa lked in and she sa id someth ing to me, and she w a s deliberately cruel , m e a n to me. A n d I just sat there while she went into the d ispensary , got something out of the d ispensary . . .And after she left the room, I just started crying, and my friend was comfort ing me. A n d she s a i d , " O h wow ! That w a s so de l ibera te ! " A n d I s a i d , " S e e what I've been through, that's happened to me , multiply that by a hundred thousand t imes, just s e e what I've been through " (105-121) Resolution:...This t ime I actually have a witness to this...(106) 109 Coda: S o that kind of abuse , it doesn ' t show on the body, that kind of psychologica l abuse . (121-123) S h e had many stories of abus i ve encounters with mental health staff. O n e nurse told her, a s Valer ie w a s in fr iendl iness explaining s h e w a s going out to eat and when she would be back, "You have a psychiatric d isorder and you're being manipulat ive." (50-51) S h e desc r ibes the mental health workers , reflecting that, ...it's a mixed bag...you can't c h o o s e who you get to work with...If you're lucky you get a good worker, and it you're not lucky you get one that...can really give a hard time. (135-140) ...a lot of the staff are mixed-up people... (364) ...that s ys tem, the way it's set up, is such an unnatural sys tem, it twists-it takes the staff and twists them around. They get twisted really quick, really quick, you know. (698-700) Another narrative descr ibes how she w a s able to stand up for herself against an oppress i ve mental health worker. "...You know it never gets anywhere but—I stood UP for myself." Orientation: A n d another incident I had , I think it w a s the s a m e time I w a s there... S o I went into Venture and Action: there w a s a staff person there and I m a d e a sarcast ic remark to them. Abstract: I don't usually go around making sarcast ic remarks, but I resent what they did to me... Action: S o he sa id , " O n e more comment like that and we're going to kick you out. Y o u know we're going to have you leave." Evaluation: A n d I had nowhere to go . I was ready to...literally jump off a bridge. I was just s o d is t ressed , Action: I started to cry...(65-78) ...I went a round the corner and I just like, made. . .a phone call to a friend who came. . . A n d then I confronted the worker... Evaluation: you know it never gets anywhere but... Resolution: I s tood up for myself. (85-93) Coda: I c an be really quite assert ive, or if l have to be, and they don't like that be cause you talk back to them. (62-64) O n e worker ha rassed Valer ie , m a d e inappropriate c o m m e n t s about her weight, and , "...he'd say different things every t ime I went there" (156). S h e a s k e d to change workers , and "...they wouldn't give me one at first and then I just kept (asking)...but finally they gave me another worker..." (158-162). 110 Valer ie ta lked about the chi ldhood sexua l a b u s e she exper ienced . We l l It started early on in my life. I gues s like when I w a s really young...I must have been eight, s e ven or eight...But I never told my parents, so , which is probably a good thing. S o I think that's probably part of the reason why I had mental health difficulties when I w a s older. (383-387) S h e a lso d isc losed that she suffered " s o m e bad , terrible bad abuse " (436) in her t eenage years a s well . That w a s a very terrible t ime for me. I mean it w a s good like in s o m e ways , it w a s good 'til this a b u s e started happening, and that w a s sort of let go , you know, and it just t rashed me, at least that w a s my experience.. . (445-449) In reply to the quest ion of whether anyone a s k e d her about these traumatic exper iences in her treatment s h e sa id , O h no, oh no not at all, no not at all...(397) They take the person away...out of their env i ronment and what 's going on around them and say well this is your problem. It doesn ' t matter if they are starving to death and.. .committ ing suic ide. A n d another reason.. . is they are being p laced in such awful situations...they can't s e e any way out. (403-412) Valer ie w a s angry at the way she w a s treated after being hospita l ized. They 'd just put me in the hospital and then they would dump me out in the street, like I w a s a p iece of d i sposab le t rash. (221-223) They would d u m p m e out and put m e back in the s a m e situation over and ove r aga in . It was terrible, it w a s terrible. (465-468) After Valer ie was ' d u m p e d ' out into the community again s h e faced the difficulties of unsafe hous ing in the a rea she could afford to rent, the downtown easts ide. "...I was easy prey, easy prey for people..." Coda: ...I was easy prey, e asy prey for people, you know. Abstract: A n d my mind wasn' t functioning at that t ime. It wasn't my fault, but...I certainly paid the price for it...(231-233) Orientation: Wel l for example . I g u e s s I must have been about 28.. . I rented a little room in a boarding home...(not) a government . . .home, but it w a s a real dive, but that's all I could afford. ...The third day I w a s there s o m e o n e k icked down my doo r ...it was about 4 o 'c lock in the morning and Plot: all of a sudden I heard this noise and I got up and looked in my kitchen, and my door w a s being kicked down...I was this skinny little kid off the street... my door 's being k icked down and my mind's not functioning properly. S o I w a s just standing there thinking, "What a m I going to do? " I l l ...So this guy c o m e s in and I thought, "He 's go ing to rape me! " ...So I sa id to him, "What are you doing here?" He says , "I'm looking for so and so. " S o I just ac ted really tough, I sa id , "He ' s not here. Get out now!" Resolution: A n d he just turned around and wa lked , wa lked out. Evaluation: He 'd been drinking. But...it could have been a really dicey... hav ing your door (kicked down)...it w a s a really strong door. It w a s like...survival, it w a s a totally instinctual reaction. (237-264) But there were t imes where s h e didn't avoid becoming prey; "...difficulties, mostly with men.. .stor ies that would m a k e your toes cur l " (377-379). T h e s e were stories s h e would not tell in the interview. Y a , it w a s a really terrible t ime. I can't bel ieve I m a d e it through, it's amazing... I don't even tell that part of my story, I tell other parts of my story to people and they go , "It's amaz ing you're still alive...". (372-377) W h e n there was s o m e attention to her hous ing, Va ler ie would be put into a group home. I think everybody just thought I w a s a hope less case. . . we'll just stuff her in a home and leave her there. (1082-1085) S h e ment ioned s o m e h o m e s that were pleasant with support ive staff. A few were as bad as the rooming houses she descr ibed in the last narrative. ...They were awful, this w a s like twenty years ago...I m e a n they are bad now, they were really bad back then. They put m e in a house with people that were hooking and drug addicts and you know I w a s very suicidal . . .and the co-ordinator*s boyfriend used to tell m e all the different k inds of ways to kill myself every night.(335-342) It w a s a turning point in her recovery when she w a s able to find k indness , s o m e o n e who "...was impressed with me..." (638) and took the t ime to help her with her self-destructive behaviour. "...that vou were worth it." Orientation: I started to see a really good therapist who helped me out a lot...a private therapist, (631-637) I've been see ing her probably for 15 years now...(644-645) Abstract: S h e just ta lked to me.. . l istened to m e talk... and she 'd give me advice. . . A n d I'd say just tell me what to do to get better I sa id and I'd do it. A n d she a lso didn't b lame me for being sick. "But you are responsib le for getting better..." W h e n she sa id that I w a s happy to take on the responsibil ity for my recovery. 112 Evaluation: . . .because you have it taken away from you . A n d you don't know how to take it on after a while, you just b e c o m e totally he lp less , just like you 've no s e n s e o f— I just lost all s e n s e o f—too, limits...(1054-1072) Complicating action: I used to hurt myself a lot, cut myself a lot, because I had a lot of pain inside. Th is therapist I went to s ee 15 years ago , we went into in-depth d i scuss ions around that. Resolution: I eventually got out of doing that, and I haven't cut myself in years. (1077-1082) Coda: S o I think people in my recovery have been important to me. Peop le that have respected you, and have s e e n that you could recover, that you were worth it.(1072-1075) Valer ie a lso d i s cussed her current psychiatrist at the community mental health t eam w h o m she has found to be a helpful profess ional . S h e s e e s him only once every six months and finds that, He ' s very good because he l istens. A lot of them don't listen to you. You ' re just s o m e c razy w o m a n , that...they don't l isten to. (184-187) But e ven so she doesn' t trust h im, I never tell him anything. I would never be s o fool ish, pardon my s a r c a s m , but...I've had a lot of bad experiences. (172-175) He would.. .help me more, but I don't feel very comfortable. (181-183) S h e apprec iates that he responds when she w ishes to change the medicat ion because of side-effects or to raise or lower the dosage . He has sugges ted she try to do without drugs altogether, however s h e is too afraid of deteriorating to try it yet. S o I got a lot of my decis ions. . . ! like him, he 's a good guy, he 's a good guy, he has a good reputation, he 's a good doctor. (205-213) T h e good mental health profess ionals , the group h o m e staff and other workers have helped Valer ie to love aga in . T h e staff were really good to me , they just g a v e m e lots of love, they treated m e with respect and I just blossomed.. . I just b lossom when people give me love...(512-517) S o now I c an give love ' c ause I'm more able, s o that m a k e s me feel good . (531-533) 113 N o w that Valer ie l ives in a beautiful apartment and rece ives a disability pens ion supp lemented by her volunteer and paid work, she has the bas ics for recovery. There are d rawbacks . Her apartment is in a supported building for consumer/surv ivors run by a mental health organizat ion. W h e n one of her male neighbours b e c a m e d is t ressed , banging on her door and sc reaming in his apartment, Va ler ie had to leave for a while b e c a u s e she b e c a m e too fr ightened. The heal ing relationships with the good profess ionals and from peers at the Self He lp Group give her the support to work on her recovery. For her well-being Valer ie m a k e s sure s h e has good nutrition, exerc ise , and exp resses herself through her creative writing. S h e has deve loped her spirituality and credits her beliefs and pract ices as another strong support for recovery. Va ler ie found s o m e help in a twelve-step program and at a codependents group which a lso enr iched her spirituality. Another important aspec t for her health is her soc ia l life, being surrounded by people she likes and who like her. S h e bel ieves the work of the Self He lp G roup is very va luable, and s e e s the need for more peer counse l lors . I think that's definitely very important be cause you need s o m e o n e around you to say I feel the s a m e way and this is how I got through this, or I've exper ienced the s a m e thing. (959-962) I think when I w a s younger , I w a s just starving to find s o m e o n e who w a s going through what I w a s going through. B e c a u s e it w a s really, really intense, really, really heavy. Peop le out in the communi ty couldn't handle it. (916-921) Valer ie has had a long t ime deal ing with the effects f rom the t rauma of ch i ldhood and adult abuse , the inappropriate treatments, and the lack of proper housing and funding. S h e has now found the help that she needs to increase her well-being and recover her mental health. My exper ience with the mental health sys tem w a s it's basical ly like "One F lew Ove r the C u c k o o ' s Nest ' . . .This was not a two-hour mov ie but...like...a 1 2 , 1 5 , 17-year exper ience and it's enough to really m e s s you up. S o it's taken m e a lot of years to get where I a m and I still suffer quite a bit emotionally... Discussion Valer ie is a w o m a n who has surv ived. S h e has resil iency, and the strength to confront, stand up to and refuse to be the victim of oppress ion . 114 T h e mental health sys tem appears to have failed Valer ie ; with inappropriate treatments; not taking into account or even finding out about her history of t rauma; not giving the support that s h e needed to avoid more victimization and a fall into subs tance abuse ; and not providing the heal ing relat ionships which she needed . In the first narrative it c an be seen that Va ler ie is in a vulnerable soc ia l position a s a marginal ized a n d st igmatized person who c an be revict imized in this sys tem. S h e is power less in this situation, a s she needs a p lace to go when she is in crisis. S h e shows her resi l ience in how s h e is ab le to confront the worker in the s e c o n d narrative. S h e may be opp re s sed but will not be a silent victim and it gets her into trouble with the ' twisted' workers who are only there for the power. The third narrative again shows Valer ie a s resilient a s she "...just acted really tough.. . " (255) avo id ing becoming a victim to the drunk who broke down her door. But s h e had a terrible hous ing situation and poverty such that she s tood in s o u p lines to avoid more harmful ways of feed ing herself. E v e n though s h e doesn ' t tell all of what happened in her life o n the downtown easts ide , it may be inferred that she suffered from sexua l , and/or physical , and/or emotional abuse , "...difficulties with men.. . " , wh ich she m a n a g e d to live through. O n e of the factors for her recovery w a s the support of s o m e o n e who " respected y o u " , saw, "that you cou ld recover" and "that you were worth it." (1074-1075) The attitude of the mental health professional shown in the fourth narrative contrasts greatly to the first two. T h e in-depth d i scuss ions , the respect and long-term commitment f rom this therapist c h a n g e d Valer ie 's self-image, and enab led her to stop hurting herself and move toward health. Her narrative tells of the support for her to take responsibil ity for getting better, another major factor for recovery. She , "...talked to me and l istened to me talk..."; a d ia logue between w o m e n , she e ven , "...gave advice . " Th is w o m a n was a private therapist, she w a s not a part of the public psychiatric sys tem with its coerc ion and control. 115 A l s o in this narrative, Valer ie reveals the negat ive self-identity s h e deve loped in the psychiatr ic sys tem which takes away responsibil ity and engenders dependency to the extent that, "...you don't know how to take it on . . .become totally helpless.. . l ike you've... lost all s e n s e of...limits" (1069-1072). This dependency on a paternalistic sys tem is one of the key e lements of a psychiatr ized identity (Smith, 1990). Va ler ie 's story is an example of the difficulties faced by w o m e n who have histories of t rauma, who are not identified as having a post- traumatic s t ress r esponse and who are then revict imized by the lack of appropriate treatments and care a s well as the oppress ion and abuse found in the sys tem. Her story is consistent with the results of a research study on women ' s mental health, part of which f o cused on w o m e n who had exper ienced t rauma, conduc ted here in British Co lumb ia by Morrow and Chappe l l (1999). The lack of communi ty supports led Valer ie to more abuse , unsafe housing and eventually drug and a lcohol use to "...stop the pain...". A s Valer ie s a y s herself, what s h e exper ienced , "...was really, really intense, really, really heavy. P eop l e out in the communi ty couldn't handle it" (919-921). Th is type of distress is difficult for profess ionals to dea l with (the self-mutilation, etc.), and medicat ions do not m a n a g e this behav iour as well a s they would like. It is only in a long-term heal ing relationship that traumatized people like Valer ie c an deve lop trust, al low themse l ves to feel , exp ress themse l ves and learn to love aga in . Wha t Valer ie could a lso have used a s a young w o m a n w a s the support of people who had similar problems. S h e now w i shes to provide that type of support to others in the Self Help Group . 116 Chapter 8 Interview with Ray In his interview Ray , a man in his late thirties, gave a chronologica l account of his exper iences with the psychiatr ic sys tem and his subsequent recovery. T h e first narrative desc r ibes what he cal ls his first "real" treatment which inc luded severe side-effects f rom his medicat ion. "It's like being tortured or something, slow torture." Orientation: In 1989,1 really received the first...real treatment for my il lness. I was , ah , taken into St. Pau l s Hospita l in the s u m m e r of that year... Complicating Action: I was g iven Haldol . (19-22) ...I was told that, you know, I had a ser ious mental i l lness and that I cou ld expect to be on these medicat ions for the rest of my life. (37-39) ...I b e c a m e tired...at all t imes.. .during the day I would feel a restlessness... It 's known as Aka thes ia . ( 67-68) Coda: It's like being tortured or someth ing , s low torture. (71) Complicating Action: A n d , ah , the whole time, the whole period during the day, from getting up 'till night t ime, I had a seve re tens ion in my body, which was , ah , I couldn't relieve in any way. The only way to relieve it was to move around, shak ing yourself a bit or someth ing like that, right. (105-108) I thought of suic ide in those days . Not out of the i l lness but just be cause of the side effects. (110-111) Evaluation: S o it w a s a very, ah , tough experience.. . (109) And.. . the care t eam didn't really add ress this problem. I'd say, "You know I'm having s o m e problems." and they sa id , "You know you have to stay on your medicat ions. " (69-74) ...No one. . .ment ioned (even at the team)... that there might be any options regarding medicat ions. (30-35) Resolution: ...But it w a s s o m e months before anyone provided an alternative. (81-82) Evaluation: A n d , ah , that w a s a real failing of the sys tem. Coda: Y o u know they should make you aware that there are alternatives at all t imes. (83-86) After being d ischarged R a y found housing he could afford. He gave examp les of what happened in the cheap rooming house that he found in the downtown easts ide (DES ) in the next narrative. 117 "...The housing was a pretty atrocious-.a pretty terrible experience." Orientation: ...After I left the hospital(48). . .When I w a s first on Haldol...(560) I rented...the cheapes t room I cou ld find in the downtown eastside...(50-51) Plot: There w a s a guy down the hall w h o w a s sch izophren ic and a ex-welder and.. .he drank like a f ish. (561-563) I had a person attack me.. .he threw a g lass at my door which shattered on hitting it.(570-572) He. . .was, urn, a bad character.. . ...I went over to...his room and a s k e d what t ime it w a s and he got very upset. A n d I went back to my room and he c h a s e d me, threw himself against the door. . .So I s l a m m e d the door on his hand. . . it didn't c lose complete ly but he w a s pretty badly bloodied by that. There were fights in my rooming house . (575-581) U m , s o m e of the people were taking drugs there. (584) There 's racial tens ion, there 's thefts and break-ins due to drugs. . .people out of jail there... . . . Someone c a m e to my door with a knife and w a s stabbing at the door. (590)...He was calling me white boy, I'm going to get you white boy. I think he w a s just trying to sca re me.(593-596) Resolution: A h , it w a s m a d e known to M P A (Mental Patients Assoc iat ion) that I was , I w a s in need of better hous ing. (92-93) Evaluation: S o there 's s o m e strange things go on in that ne ighbourhood. ...It's not a great ne ighbourhood to be in, a lot of problems. (598-603) A n d the housing w a s a pretty atrocious...(53) Coda: S o it was a pretty terrible exper ience . A n d if you add to that the side-effects...(57-58) Next Ray talked about what it w a s like to take on a psychiatr ized identity. It's a real, ah , ordeal a person goes through when they b e c o m e psychiatr ized you know.. .when they first get into the sys tem. ...You lose rights, civil rights, you're incarcerated ah , you know you can't move , go out for a cigarette let's say , you can't l eave the (hospital)...you know you're impr isoned. ...So, you know that, that is a sort of, a kind of assault . (683-693) He corrected the v iew that he w a s hope less and help less at the onslaught of his psychos is . It w a s not necessar i ly when I was ill that I w a s feel ing helpless. W h e n I w a s ill I had enough conf idence . W h e n I w a s first medicated that w a s when I w a s feeling he lp less . (679-681) Whi le attending a day center Ray w a s fortunate to meet an old high schoo l friend who w a s an intern at the hospital . After hearing about the unbearable side-effects Ray w a s exper ienc ing the intern w a s able to have the medicat ion changed and reduced to a low dose . It made an incredible difference, he no longer had Aka thes i a and his s ymptoms were manageab le . 118 After R a y inquired about hous ing he was directed to the Mental Pat ients Assoc ia t ion (MPA) . Subsequent l y he m o v e d to an M P A group home . S o o n a s he cou ld , he went off the new medicat ion, feel ing that he w a s no longer in need of it. H e avo ided the psychiatr ic sys tem a s much as poss ib le (two short hospital izations) for the next four years. R a y w a s living in a group home, then a private apartment, both part of M P A hous ing , when he went back to university. He m o v e d out of the supported hous ing because of a personality conflict with the apartment coordinator and from what he cal led, "...my antipathy towards the psychiatr ic communi ty " (169). Ray sa id in 1995 he deteriorated, w a s failing s o m e courses and w a s unable to keep up with the work-load. He then went for help to the hospital at U B C . T h e next narrative desc r ibes the treatment he received in the emergency ward . "—Without any warning I was set on by three or four security guards..." Coda: A n d I had an exper ience that to this day bothers me a little bit. Orientation: A n d , ah , I w a s in the emergency , ah , p lace of U B C hospital . Prologue: I w a s quite ill, ah , but I conta ined myself. A n d , ah , I w a s just, ah , sitting waiting for a treatment with a doctor, for a psychiatrist to s ee me, or ah , maybe I had seen a psychiatrist (194-201)...! wasn't caus ing a disturbance. I might have been behav ing a little strangely, you know looking around a little too much or facial express ions but no real d isturbance and...(230-234) I wasn't threatening anybody. (241) Action: But ah , you know, without any warning I w a s set on by three or four security guards and brought into a s ide room, and , ah , then I w a s given s o m e medication.(202-206)... they held me down (211) and that, ah , you know, ah , they didn't m a k e any effort to tell m e what they were doing to me. (223-225) They just c a m e in with, ah , the needle and stuck it in me . (227) I didn't know what the medicat ion was . (210) I w a s afraid it w a s Haldol , which was...I'd had a bad exper ience with...(215-216) Resolution: S o I got very upset.(220) Evaluation: Y o u know, I could have been whee led away to e lectroconvuls ive therapy and I wouldn't have known. (250-252) Coda: S o you know I have an i ssue with the emergency ward there...(222) I think a patient has a right to know.. .even if they s e e m ill, there shou ld , there should be an effort made to tell t hem what 's happen ing to them. (246-249) I a s k e d Ray if he had compla ined about this treatment. 119 Y a I did, I wrote a letter to U B C hospital , rece ived a reply to the effect that the records show that you were quite ill at the t ime and the treatment w a s necessa r y a n d that w a s the end of it. (256-259) After this R a y b e c a m e a compl iant patient who attended a communi ty care t eam. H e moved into a fraternity house and found work as a painter. ...But I w a s still feel ing s o m e s ide effects and , ah , you know, it w a s pretty tough getting up in the morning and hav ing the s tamina to carry through the day at my work. H e sa id that he was , "...very d i scouraged" at this t ime, "...there s e e m e d to be no future". He w a s then thirty-four, he had fai led his university cou rses but still had debts f rom his student loans (which he still has), had no real r esume having no recent work, and had lost contact with his fr iends. Looking back at the t ime before his assaul t he now say s that, "...I w a s severe ly ill during this t ime. I m e a n I was able to function, but I was still carrying around this i l lness with me" (139-141). He w a s briefly hospital ized twice in the four years he w a s off medicat ion but rece ived no other treatment. R a y desc r ibes his treatment by the psychiatr ic sys tem a s on the whole good . H e felt he was treated at the community care t eam as a whole person but, "I don't think they really covered all the b a s e s in informing m e in what w a s going on and what I cou ld do . S o I think there are s o m e fail ings there" (465-467). Ray ' s turning point in his recovery w a s his a t tendance at a vocat ional training program which, "...got m e doing someth ing, looking towards the future" (348-349). He ga ined conf idence in himself and after a pract icum as a computer office ass istant landed a job with a mining company . He w a s laid off but still maintained his conf idence and found on-call work at a mental health agency . A s those hours were reduced he found another part-time position a s a C o n s u m e r P rogram Organ izer/Advocacy Ass istant , head ing a committee of c o n s u m e r s created to provide advocacy for their peers and input to a care t eam, but who presently organize events and speakers . H e is a lso paid to do c a m e r a work video-taping a monthly coffee house . R a y has never been on disability benefits. He has been maintained through welfare payments , although he would like to find full-time work as a consumer provider of mental health serv ices . He has been trained to be a peer support worker and is now taking courses as a mental health worker. However he is not confident of finding enough work, . . .because a lot of the work is unionized, and the unions don't want people being hired just on the bas is of just being consumers , and ah , s o there is a big problem with that. (454-456) R a y a lso volunteers as a m e m b e r of a committee which funds c o n s u m e r projects, a s a board m e m b e r of the vocat ional training society, as t reasurer on the board of the Self Help Group and sits on an editorial board for a c o n s u m e r newsletter. H e is in many ways a mode l c o n s u m e r trying to help a s much a s he can within the sys tem. W h e n it w a s said that he had a lot of irons in the fire he replied, "You know it's funny, I do a lot of stuff in that way. But I don't bring in enough i ncome every month" (444-445). Ray bel ieves that the peer communi ty is very important for people 's recovery. ...They understand where.. .you're coming f rom, you don't have to explain to them about your i l lness, and.. .we all h ave someth ing in c o m m o n in that we're conce rned about, ah , how the sys tem is working and where it can be improved and that sort of thing...(492-496) They ' re all potential activists. But, no, the community is good , I've made s o m e good fr iends in the communi ty . (502-503) H e notes that there are many people who because of their situations do not use peer support to the extent that they cou ld . But, ah , a lot of them don't really participate that m u c h because , a h , they're d i scouraged , they're overmedica ted and that sort of thing. (499-501) Ray thought the Self He lp G roup w a s va luable in compar i son to other mental health agenc ies or organizat ions because : ...it's smal l enough to...allow a person to...not be intimidated, or feel uneasy because there's s o m e mental health professional looking over their shoulder. (654-656) ...Being...a smal ler organizat ion is a good thing...It's a draw back too, you don't get the word out to a s many people as you could...(658-662) R a y ta lked about the men ' s support group, their outings to shoot pool , share a smal l mea l or coffee, a n d their d i s cuss ions about their, " . . . i l lnesses a n d i s sues and things like that." (620) T h e 121 men reported that they enjoyed the support group and were very support ive of the work of the Self-Help Group . . R a y d i s cussed the dif ferences between consumer s and anti-psychiatry, and that consumer s like him have found the sys tem works for them. He found other people who had difficulty functioning under high d o s e s of drugs, and "...the medicat ions were changed and they c a m e to life aga in , they c a m e b a c k . . . S o I do think the medicat ions do make a difference." (711-712, 714) . H e added that he ag rees with psychiatr ic surv ivors on s o m e points, "...forcing people to take medicat ions, say out in the community , is the wrong thing to do..." (766-767). Not only d o e s it set up a distrust of se rv i ces but it a lso den ies the fact that the medicat ions c an be extremely debilitating. I've compared being ill and on Haldol and I think I'd rather be ill. That 's a tough dec is ion to make too. . .When I w a s ill I was able to hold onto a little bit of reality but you know (with the wrong drugs or dosage ) everything goes down the tubes , really you can't function properly. (768-773) H e made the point that e ven though there is a bill of rights at the care t eam that s a y s every person should be treated with respect , be well informed and participate in his own treatment, this ideal has not yet been real ized. . . .People a lso have a right to treatment but they shou ld be well-informed about what treatment is avai lable, they should participate in their treatment. (756-759) R a y has faith in medicat ion but a lso real izes that others don't for var ious reasons ; either they don't work for them, they, "...still hear vo ices and things like that" (540) or, " a lot of people . . . seem to be overmed ica ted" (544-545) and , "there is the odd person who doesn ' t have an i l lness and ends up getting medicated. . . " (536). Ray m a d e s o m e suggest ions of what the Self Help G roup could do to help people recover. He sa id it would be useful to provide information about how the psychiatr ic s ys tem works, what resources are avai lable, how to find hous ing, what opt ions there were for medicat ions, and how 122 to begin gr ievance procedures . It could offer educat ional workshops , and deve lop "...a deeper understanding of psychiatry a n d how it c an potentially help people" (873-875). ...I think that's one of the big d rawbacks in...entry into the psychiatr ic s ys tem, when you first get ill, the first t ime you get medica ted , you don't know a lot. It would be really helpful to have people w h o could inform you about what 's go ing on , where you c a n go , what are your options. Y a , it would be important. (1005-1010) H e s p o k e of the importance of deve lop ing alternative serv ices , such a s a sa fe house , a p lace people c an go to for peer support when feeling unable to cope but not in need of hospital care. ...I e ven think government should fund it b e cause we need alternatives avai lable to the people... if we are eve r going to find out what works . (904-907)...If there are alternatives then there 's an opportunity for growth to occur , maybe where we don't expect it. But if we are just going with one mode l then we are, ah , shutting out a lot of opportunity. (910-913) Discussion R a y d i s cussed the onslaught to his self-image and identity with the loss of rights that c a m e from an initial hospital ization and psychiatric d iagnos is . The negat ive c h a n g e to an identity of a person with a psychiatric d iagnos is was c o m p o u n d e d by the "assault" of being " impr isoned" and the he lp l essness that he felt after be ing medicated . H e was outraged that information was withheld from him, suffering as much as he was , a s well a s by the indifference to his living situation. Hospital ization m e a n s becoming an object of the medica l g a z e with its focus on the pathological a spec t s of a person . The miss ion of s ymptom a n d behav iour managemen t does not allow a person-to-person relationship where a concern and empathy for the patient could be deve loped and where it cou ld b e c o m e apparent that the side-effects a re more harmful than the i l lness itself. Ray s a y s he had conf idence and w a s not hope less or help less while ill. He b e c a m e hope less and he lp less b e c a u s e of his unsafe living situation, the demoral izat ion of being seen a s a d iagnosis , under the ever-present threat to his f reedom, and with a treatment that w a s like "s low torture". In a book about the effects of psychiatr ic drugs (Breggin & C o h e n , 1999), the side-effect akethis ia is a lso reported a s torture. A n "...individual is virtually tortured 123 from inside his or her own body a s feel ings of irritability and anxiety compe l the person into constant motion..."(P 78) and which, "...in the extreme c a s e , can lead people to suic ide or to homic ide" (Putten & Marder in Breggin & C o h e n , 1999, p.78); Ray exper ienced the oppress ion of the sys tem in that he w a s not l istened to, important information about alternative medicat ions w a s kept from him and the socia l and e conomi c determinants of his health, his living situation, were not looked into. For example , he would not have been helped with his hous ing unless he had initiated it. "...There was no effort to do anything about my hous ing" (88-89). The debilitation that Ray felt f rom the medicat ion, the lack of dia logue, "...no one really ta lked to me about the i l lness" (29-30), his history not l istened to, and his terrible living condit ions all had a negat ive effect on his self-image. H e w a s reduced to the identity of a defect ive h u m a n being living amongs t other outcasts of the socia l s ys tem in the downtown easts ide. He s a w suic ide as a poss ib le option, offering potential relief f rom his suffering. R a y sa id that the lack of information about alternative drugs was a real failing of the sys tem. H e felt betrayed and distrustful of a sys tem that without his connect ion to s o m e o n e in authority would have left him in that unbearable situation. Th is distrust lead to his avo idance of the mental health sys tem for the following four years . There were no alternative serv i ces that he knew of that he could a c c e s s . The assaul t at the U B C hospital emergency room, c o m p o u n d e d by Ray ' s fear of re-exper ienc ing the horrors of being on Haldol , w a s a traumatic event. Wha teve r rationalizations they had about Ray ' s level of dange rousness , the results of this ' s h o w of power" w a s a convers ion ; from the mental health professionals ' v iewpoint he had s e e n the light, had insight into his i l lness, and after that would comply with taking medicat ions. He now be l ieves that he will have to take medicat ions the rest of his life. I'm quite confident that if I g o off t hem I'll get ill aga in . (734) ...You could go off, if you were see ing a psychiatrist, ah , every week or so . T h e thing is if you get ill you get de lus ional , if you have Sch izophren ia , this is crazy. 124 Go ing to s e e the psychiatrist they're going to put me back on eventually. (740-743) Ray has accepted the medica l vers ion of what he can expect from his life, particularly be cause he w a s shown that he couldn't e s c ape . H e has been a cooperat ive compliant client at his care t e am; At his retirement party, Ray 's psychiatrist told him, "Wel l you know you have a great future" (479-480). In talking about his extens ive work and volunteer posit ions, Ray w a s d i scouraged that even with all this work he still does not make sufficient income. Many consumer/surv ivors have worked a lot within agenc ies , until they burn out, b e c a u s e they have a miss ion to help their peers , but who still live in poverty despite their proven capabil it ies. Ray ' s position that the dramat ic improvement from switching medicat ions proves that medicat ions work has a similar logic to there being a great improvement when a person s tops hitting her head against a wal l . Ray did not have alternative treatments, other ways to reduce the effects of his symptoms , to measure the good medicat ion against. The soc ia l approval of be ing a compl iant client and the encouragement that he has a great future ba l ances the side-effects that he still exper iences . If he left psychiatric ' ca re ' and resisted taking medicat ion he knows he would potentially risk another t rauma from coerc ive treatment. Ray ' s suggest ions are useful to provide direction for the Self-Help Group . His v iews on alternatives touched on an important aspec t of the nar rowness of providing only biological treatments. By "...just going with one model . . . " and "shutting out a lot of opportunity" (912-913) how are we "...ever going to find out what works (906-907)...There's an opportunity for growth to occur , maybe where we don't expect it" (910-911) R a y m o v e s beyond his c o n s u m e r position when he heralds such possibil it ies and hope for the opportunities of exploring alternative treatments, and by support ing the Self Help Group which could be instrumental in providing them. 125 Chapter 9 Interview with Kanti Kanti is a w o m a n in her early fifties who w a s raised in India. After her Eu ropean father left, her mother married an Indian man and had five more chi ldren. Her mother died when Kanti w a s a young w o m a n . Kanti jo ined her aunts in C a n a d a and the rest of her family fol lowed soon after. The interview is reported chronological ly following how Kanti moved from one subject to another and back and forth in t ime. Kanti had only one exper ience with the psychiatric sys tem before she had a heart attack. After one of her sisters died in 1970, Kanti w a s worried that instead of grieving she had shut down, that she 'b lanked out' everything. For about six w e e k s she went to a psychiatrist who "...just sat and didn't say much. . .he didn't draw me out.. .and we talked about everything except my sister" (19-20). A n d so s h e dec ided to miss her last appointment without telling the psychiatrist why a s a way to express her anger at his inadequate treatment. A n d then...I didn't have anything to do with the psychiatr ic sys tem. I kept telling people that my father had raped me , molested , (and) a b u s e d (me)... (27-29) I w a s telling my peers , my sibl ings a n d there w a s no response , a s if I hadn't sa id anything.. .So I just sort of mudd led a long. (34-36) Kanti w a s not encouraged to find counsel l ing ass i s t ance before or after this attempt with psychiatry. S h e finally a c c e s s e d help from a twelve s tep self-help group, Codependen t s A n o n y m o u s ( C O D A ) after s h e found herself in an abus ive relationship. The twelve-step group helped her to m o v e from focus ing solely on her partner to looking at her unreso lved i ssues . Their support gave her the courage to leave the relationship. In the group she found it wonderful to be with others who had similar exper iences . ...I just cr ied because s o m e o n e e lse w a s say ing they had been abused . . . O h G o d , it was like a relief (264-266)... A n d there was this eno rmous understanding and these were strangers.. . " (275-276) Ref lect ing on the f reedom to talk about her a b u s e in this group, Kanti next descr ibed the effect on her sexuality of her stepfather 's unwanted attentions. Her first sexua l encounter felt good at t imes and she has to dea l with this fact. "I still resent the fact this man imprinted certain things on me..." (282-283) A n d Kanti 's sexuality is still not free from the effects of this abuse . S o I'm cel ibate, it's eas ier but I don't want to be. (291) I've never really had a relationship where I c an just enjoy sex without hang-ups. (294) Throughout her life Kanti had m a n a g e d to avoid address ing the i s sues of her ch i ldhood abuse by throwing herself into work, becoming a workahol ic , and ignoring the s ymptoms she exper ienced . S h e worked a s an administrator in bus iness for many years . Then s h e opened up her own family daycare . Before her heart attack s h e was working, going to schoo l for early ch i ldhood educat ion, and storytelling using puppets which she made , all without any rest. ". . .No Saturdays , no Sundays , just nothing, just keep going whatever it is" (57-58). A round this time s h e a c c e s s e d s o m e crisis counsel l ing from a socia l worker at a ne ighbourhood clinic who helped her again to add ress the i ssues of her abuse . ...She w a s really good.. .there w a s s o m e exchange taking p lace not this man sitting over there...(216-218) I phoned my stepfather, cal led him an assho le . S o yeh, s h e w a s a lot of good. . . (209-210). W h e n Kanti was hospital ized for her heart attack she could not use her usua l cop ing mechan i sms . ...I couldn't do anything and all my body was concentrat ing on this physical pain and keeping me alive. (65-67) I w a s just crying...I w a s nervous , (I had a ) needle phobia...(68-70) I was a very difficult patient and then finally the psychiatrist c a m e to s ee me . (73-74) Kanti began by shouting at the hospital psychiatrist. Wha t are you going to d o ? A r e you going to s e e me for 15 minutes and write my life in one s e s s i on , you know, so lve the problem of being a b u s e d and having all that? (84-86) S h e burst into tears and couldn't s top crying. Another psychiatrist arr ived, the two conferred and she w a s left a lone. After s h e w a s d ischarged s h e w a s sent for a psychiatric a s ses smen t . S h e related that she real ized that "...all men are not Ted (her stepfather), you know like Ted is not all m e n " (102-103), but still s h e found difficulty with the a s s e s s m e n t be cause it w a s conducted by two men even though s h e found them to be compass iona te . 127 S o o n after Kanti left hospital , her be loved compan ion , her cat Puffa, died and then s h e lamented, "...I w a s a lone, I had a heart attack, I w a s sca red and I couldn't walk" (95-96). Her fear of another heart attack w a s s o great that s h e could not exert herself e ven with walking. Her doctor, a male phys ic ian, prior to her heart attack had not l istened to Kanti 's concerns . I kept telling him for a year before that there is someth ing wrong with my heart. (He said) that it was m e n o p a u s e or da , da , da , da , da , but I'd say heart, heart, heart...He w a s not a very good doctor other than he did take instructions well to a point. Espec ia l ly after I had a heart attack. Then he l istened. (183-189) After s h e left the hospital he prescr ibed Paxi l and At ivan to help her quit smok ing and relieve her anxiety. Luckily s h e avo ided becoming addicted to At ivan. Her doctor heard through the ne ighbourhood clinic about a psychiatrist who provided a twelve week program preparing people with anxiety disorders to return to work. H e referred her to this w o m a n psychiatrist who told Kanti to give herself permiss ion to look after herself. ...She w a s wonderful. . .very wonderful grac ious w o m a n . (134).. .She s aw my goodness you know...(139).. .She did help me. . .saying things like I don't have to do anything that I don't want to do, that it's OK , all I wanted to do w a s read, s leep and watch TV. . . she sa id ...that's what you're s u p p o s e d to do when you're healing.(197-202) S h e a l so attended a healthy heart exerc ise program at a hospital where the w o m e n who ran the program "...were just incredible" (151) with their pat ience, understanding and c o m p a s s i o n . After I a s k e d why s h e was crying while she was being ass i s ted to walk at her first exerc ise sess ion , Kanti sa id it w a s from fear and that this fear w a s not a new thing for her. ...Before it was bad , like going to the hairdresser I wou ld a lways think that I would die. Th is is part of being a b u s e d and not treated, it's extreme.. . Th ings are going too good , I'm going to die, things are not going good , I'm going to die. B e c a u s e it is the worst thing that c an happen , it's obl ivion. A n d yet at the s a m e time...the act of dying is very scary but once you're dead well nothing can hurt you right? S o I wouldn't actively do someth ing , but passively...I don't know. (162-172) F rom the special ist on anxiety d isorders, the w o m a n psychiatrist, Kanti learned that ...I had very good reasons to feel this way. I had a right to feel this way. (491-492) A n d I a lso had the right to feel another way you know and that w a s my cho ice and when I w a s ready to c h o o s e to feel another way I would do it. (494-496) 128 T h e psychiatrist referred Kanti to an anxiety disorder clinic where s h e met other people who exper ienced anxiety. ...(It) w a s s o wonderful to hear that there were other people who thought they were going to die if they have their hair cut...It w a s like wow! (239-241) There s h e learned techn iques to help her cope , l ike breaking down activities into manageab l e s teps and writing up a transcript in a book that she would carry with her. After the anxiety d isorder clinic Kanti was able to return to counsel l ing with the soc ia l worker at her ne ighbourhood clinic. S h e dealt with her a b u s e and the anger s h e felt towards those w h o discr iminated against her b e c a u s e s h e was illegitimate and half-caste. Kanti was a l so angry at her mother w h o m after her d isc losure no longer treated her with the love that s h e exper ienced before. T h e following narrative tells how Kant i d i s c losed her stepfather 's abuse , how she left home, and why she returned. "I just wanted to go back to being a little girl 'cause that's what I was." Orientation: A n d my mother, when I told her, I was ten years o ld. Complicating Action: . . .And she kept quest ioning me whether it w a s one finger or two and I sa id well it wasn' t his penis b e c a u s e I w a s really upset with her.. A n d then she sa id , "Why, why w a s he going to you w h e n he had his wife next door? " S h e confronted him, he sa id , "No " of course , but s h e didn't bel ieve him, s h e bel ieved me ' cause I w a s really a good chi ld. Explanation: I w a s a good chi ld, I hadn't been beaten or a b u s e d and my grandparents looked after me with mum.. . I didn't know fear...that w a s my sanity, I a lways knew (that my grandparents loved me) and I did ( love them). (308-326) Complicating Action: I wrote to them.. .and my aunt.. .a G.P. . . .she c a m e , and. . . my g randpa and g randma just sat there that even ing with my m u m and dad . They sa id , "We're taking her." and they cal led me and they said. . . " D o you want to c o m e with u s ? " and I sa id , "Yes . " "Do you want to stay here? " and I sa id , "No. " That 's how I left. (345-352) Resolution: ...They c a m e and took me away. I didn't tell them why but they just insisted. (334-335) Coda: I just wanted to go back to being a little girl c a u s e that's what I was . (313-314) Epilogue: But then I went back (to my family). Y e h , be cause this w a s my mother... 129 Coda: S o that whole thing too is the co ldness of my mother who tortured me a s the other w o m a n and I w a s only ten years old. (352-356) E v e n with the anger that s h e feels, Kanti s a y s she m i s se s her mother who died when she was forty-two years of age . "I...miss the relationship that I could have had with her maybe.. ." (360-361) Just before her mother 's death Kanti b e c a m e pregnant. S h e s a y s s h e would have kept the baby and not had an abortion if her mother had not d ied. I 'm...sometimes still angry with my family...they ignored me ...except for my grandparents , there was s o much pressure. It was pressure to have this abortion you know and for why ? ...That it w a s like the s h a m e you know. I was a bastard having a bastard sort of thing, like, O h h ! (370-378) The c o m m o n course of heart d i sease is that people often have another attack in a year or two, but Kanti told herself, "No fuck way!" (398). S h e changed her diet reducing the level of cholesterol , she quit smok ing , she exerc i sed and then took two sess i ons of art therapy " . . .because I real ized that there w a s still a lot of s a d n e s s in me...that needed to be let go o f " (408-410). S h e w a s s a d but often covered it up by mak ing people laugh. ...It's a way of keeping myself safe . . .You make people laugh and they like you s o you're safe . . .And that's how I've coped... (423-427) If they're laughing at you they're not going to hit you. ..(445-446) they're not going to put their f ingers on your private parts if you laugh. (448-449) Kant i w a s fortunate to meet the leader of one of the support groups of the Self He lp G roup ( SHG ) in a shared house which she m o v e d into. This group that she eventual ly jo ined was especia l ly for South East A s i a n w o m e n . T h e s e w o m e n found it difficult to work in a group. They were very affected by their culture's expectat ions for them to marry and have chi ldren. Kanti sa id s h e w a s different b e c a u s e s h e w a s already an outcast, s o in a way she w a s freer of those expectat ions, but a lso s h e wasn't . S h e had a tubal ligation at around 27 years of age. S h e has three sisters left al ive and one brother and none of them have chi ldren. S o in a way we are free but at the s a m e time, you know...it kept... all of us in this thing where children...aren't a joy. Obv ious ly that's what we exper ienced right? A n d we 'd been told, "Your mother a lmost died giving birth to you. " (But I reply)...didn't you have 6 more ? Y o u know, like, god ! Oh I m e a n it wasn't her it w a s him. (616-622) 130 Kanti volunteered a s a board m e m b e r at a communi ty center, participating on commit tees , and in a project cal led ' You r O w n Backyard ' . N o w s h e is the leader of another of the women ' s groups of the S H G . Kanti has recognized her progress through working on her i s sues and joining with others. A s a group facilitator she is able to listen to the w o m e n then ask quest ions to bring out ideas, rather than trying to control the p rocess and impose her ideas onto them. "It was a l so really good to hear people say, "Thank you, we had a good meet ing." "(730-732). Kanti has a l so contributed by writing an article about her recovery in the S H G newsletter. Kanti wants to continue with art therapy a s it comb ines both her interest in deve loping her artistic s ide and freeing herself from the effects of t rauma. "I real ized that there w a s someth ing that needs to c o m e out" (808-809). S h e is able to open up, explore her feel ings and express herself from "...my d e e p inside of me, f rom s o m e lonely realm...of the shadows of my soul...(805-806) This outlet is important, as Kanti s ays , "I wouldn't be able to go on without it" (838). The art therapy is affordable s ince it is conduc ted in a group and provided in a communi ty program which subs id izes half of the cost for Kanti . In talking about s t igma, s h e relates how people can't understand her difficulties. S h e s a y s that yes she is 'wounded ' , she cal ls it a "mental disability' " . . .because I don't know what else to use " (893). Peop le don't understand that Kanti is not just making an e x c u s e not to go to rallies and large groups, she really cannot. ...There are people who say well... I g u e s s you are making a cho ice about where you want to go... I say, "No , listen to me, I don't have a cho ice . I w ish I d id, but I don't...I cannot do it. I have a condition for reasons that I'm not going to go into with you but don't lay this guilt trip on me..." (906-912). ...Or people will say that, "You don't look (d isabled) . . . " (915). A l s o in relating to st igma, Kanti recounted her exper iences with men who have exp ressed interest in her. ...then I let them know that I have a mental disability and these are my condit ions, agoraphob ia , panic disorder. A n d my god , man , I don't hear from them. (939-941) 131 The "...anxiety and panic disorder. . .has kept me safe from a lot of things