Critical Inquiries for Social Justice in Mental Health 9781442649200, 9781442626621

Table of contents :
Cover
Copyright
Contents
Preface
Introduction: Science, Social (In)Justice, and Mental Health
Part One: Foregrounding Social Justice Theorizing
1 “Women and Madness” Revisited: The Promise of Intersectional and Mad Studies Frameworks
2 A “Third Space” for Doing Social Justice Research
3 Global Psychiatrization and Psychic Colonization: The Coloniality of Global Mental Health
Part Two: Decolonizing Research and Practice
4 Mental Health in Africa: Human Rights Approaches to Decolonization
5 Dancing with Complexity: Decolonization and Social Justice Dialogues
6 Melq’ilwiye (Coming Together): Re-imagining Mental Health for Urban Indigenous Youth through Intersections of Identity, Sovereignty, and Resistance
Part Three: Gendering, Discourse, and Power
7 Is It Normal or PMS? Women’s Strategies in Negotiating And Resisting Negative Premenstrual Change
8 Depression in Workplaces: Governmentality, Feminist Analysis, and Neoliberalism
9 Gender Non-conformity or Psychiatric Non-compliance? How Organized Non-compliance Can Offer a Future without Psychiatry
Part Four: Media as a Site of Social (In)Justice
10 (De)Pathologization: Transsexuality, Gynecomastia, and the Negotiation of Mental Health Diagnoses in Online Communities
11 “One in Five”: The Prevalence Problematic in Mental Illness Discourse
12 Madness in the Media: An Intersectional Analysis of Educational Films and Television Programming, 1940–69
Part Five: Refashioning Research for Social Justice Praxis
13 Ethics, Research, and Advocacy: The Experiences of the NAOMI Patients Association in Vancouver’s Downtown Eastside
14 Using Arts-Based Methods to Create Research Spaces That Encourage Meaningful Dialogue
15 Disrupting Dominant Discourses: Rethinking Services and Systems for Women with Experiences of Abuse
16 An Intersectionality Approach to Resilience Research: Centring Structural Analysis, Resistance, and Social Justice
Contributors
Index

Citation preview

CRITICAL INQUIRIES FOR SOCIAL JUSTICE IN MENTAL HEALTH Edited by Marina Morrow and Lorraine Halinka Malcoe

An exceptional showcase of interdisciplinary research, Critical Inquiries for Social Justice in Mental Health presents various critical theories, methodologies, and methods for transforming mental health research and fostering socially just mental health praxis. Marina Morrow and Lorraine Halinka Malcoe have brought together a diverse group of scholars, activists, and practitioners whose work exposes and disrupts the biomedical, neoliberal, and individualistic practices that permeate contemporary mental health research, policy, and practice. The contributors employ a variety of methodologies including intersectional, decolonizing, Mad studies, feminist, post-structural, transgender, queer, and critical realist to interrogate how power relations manifest in local to global mental health systems and their impact on people with mental distress. By privileging the voices of people with lived experiences of emotional distress and psychiatry, the collection encourages the reader to envision systems and supports designed from the bottom up, in which the people most affected have decision-making authority over their formations. Critical Inquiries for Social Justice in Mental Health demonstrates why and how theory matters for knowledge production, policy, and practice in mental health, and it creates new imaginings of decolonized and democratized mental health systems, of abundant community-centred supports, and of a world where human differences are affirmed. is professor and chair of the School of Health Policy and Management at York University. m a r i n a m o r ro w

is associate professor of social epidemiology in the Joseph J. Zilber School of Public Health at the University of Wisconsin–Milwaukee, and adjunct professor in the Faculty of Health Sciences at Simon Fraser University. lorraine halinka malcoe

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Critical Inquiries for Social Justice in Mental Health

EDITED BY MARINA MORROW AND LORRAINE HALINKA MALCOE

UNIVERSITY OF TORONTO PRESS Toronto Buffalo London

© University of Toronto Press 2017 Toronto Buffalo London www.utppublishing.com Printed in Canada ISBN 978-1-4426-4920-0 (cloth)   ISBN 978-1-4426-2662-1 (paper) Printed on acid-free paper. Library and Archives Canada Cataloguing in Publication Critical inquiries for social justice in mental health / edited by Marina Morrow and Lorraine Halinka Malcoe. Includes bibliographical references and index. ISBN 978-1-4426-2662-1 (paper).  ISBN 978-1-4426-4920-0 (cloth) 1. Mental health services – Research.  2. Social justice – Research.  I. Morrow, Marina, 1963–, author, editor  II. Malcoe, Lorraine Halinka, 1962–, author, editor RA790.5.C75 2017   362.2072   C2017-900530-8 University of Toronto Press acknowledges the financial assistance to its publishing program of the Canada Council for the Arts and the Ontario Arts Council, an agency of the Government of Ontario. University of Toronto Press acknowledges the financial support of the Government of Canada through the Canada Book Fund for its publishing activities.

Funded by the Financé par le Government gouvernement du Canada of Canada

Contents

Preface  ix Introduction: Science, Social (In)Justice, and Mental Health  3 l o r r a i n e h a l i n k a m a l c o e a n d m a r i n a m o r ro w

Part One: Foregrounding Social Justice Theorizing 1 “Women and Madness” Revisited: The Promise of Intersectional and Mad Studies Frameworks  33 m a r i n a m o r ro w

2 A “Third Space” for Doing Social Justice Research  60 viviane josewski

3 Global Psychiatrization and Psychic Colonization: The Coloniality of Global Mental Health  87 china mills

Part Two: Decolonizing Research and Practice 4 Mental Health in Africa: Human Rights Approaches to Decolonization 113 mohamed ibrahim

5 Dancing with Complexity: Decolonization and Social Justice Dialogues 138 ru b y p e t e r s o n a n d s a b i n a c h at t e r j e e

vi Contents

6 Melq’ilwiye (Coming Together): Re-imagining Mental Health for Urban Indigenous Youth through Intersections of Identity, Sovereignty, and Resistance  165 nata l i e c l a r k , pat r i c k wa lt o n , j u l i e d ro l e t , ta r a t r i bu t e , g e o rg i a j u l e s , ta l i c i a m a i n , a n d m i k e a r n o u s e Part Three: Gendering, Discourse, and Power 7 Is It Normal or PMS? Women’s Strategies in Negotiating and Resisting Negative Premenstrual Change  197 ja n e m . u s s h e r a n d ja n e t t e p e r z 8 Depression in Workplaces: Governmentality, Feminist Analysis, and Neoliberalism  229 k at h e r i n e t e g h t s o o n i a n

9 Gender Non-conformity or Psychiatric Non-compliance? How Organized Non-compliance Can Offer a Future without Psychiatry 255 jemma tosh

Part Four: Media as a Site of Social (In)Justice 10  (De)Pathologization: Transsexuality, Gynecomastia, and the Negotiation of Mental Health Diagnoses in Online Communities  285 t. garner 11 “One in Five”: The Prevalence Problematic in Mental Illness Discourse 312 ta n ya t i t c h ko s k y a n d k at i e au b r e c h t

12 Madness in the Media: An Intersectional Analysis of Educational Films and Television Programming, 1940–69  333 w e n dy c h a n a n d d o ro t h y e . c h u n n Part Five: Refashioning Research for Social Justice Praxis 13 Ethics, Research, and Advocacy: The Experiences of the NAOMI Patients Association in Vancouver’s Downtown Eastside  365 s u s a n b oy d , dav e m u r r ay , a n d n ao m i pat i e n t s a s s o c i at i o n

Contents vii

14 Using Arts-Based Methods to Create Research Spaces That Encourage Meaningful Dialogue  386 i n d r a n i m a rg o l i n , t e r ry k ru pa , s e a n k i d d , da r r e l l bu r n h a m , daw n h e m i n g way , m i c h e l l e pat t e r s o n , and denise zabkiewicz

15 Disrupting Dominant Discourses: Rethinking Services and Systems for Women with Experiences of Abuse  413 l o u i s e g o da r d a n d v i v i a n e j o s e w s k i , w i t h j i l l c o ry , a l e x x a a b i - jao u d é , l o r r a i n e h a l i n k a m a l c o e , and victoria smye

16 An Intersectionality Approach to Resilience Research: Centring Structural Analysis, Resistance, and Social Justice  443 s a r a h c h ow n a n d lo r r a i n e h a l i n k a m a lc o e

Contributors  475 Index  487

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Preface

Books typically have a long period of gestation, arising from multiple influences, intellectual encounters, and conversations. This collection is no exception. Critical Inquiries for Social Justice in Mental Health began to germinate during several years of exciting national and international collaborations among scholars, practitioners, and activists who have been on the cutting edge of researching and redressing social inequities in mental health. These collaborations were nurtured through the Centre for the Study of Gender, Social Inequities, and Mental Health (2009–15),1 which included thirty-two scholars2 from Canada, the United States, the United Kingdom, and Australia, as well as an advisory committee and multiple knowledge brokers with representation from a wide range of community organizations, government departments, and social justice advocates. The centre quickly rose to the forefront of developing research methodologies to investigate how social inequities, and the oppressive systems that sustain them, operate in mental health. From its inception the centre foregrounded the contributions of people with lived experiences of mental distress and psychiatry. It fostered dialogue across differences in mental health experiences, scholars from diverse disciplinary backgrounds, and people working in different sectors of mental health. The centre was committed in its operations to finding ways to ensure that people who had experienced psychiatrization could engage with the centre without having to assume psychiatric labels or identities. In hiring research assistants and in adjudicating competitive trainee fellowships, the centre encouraged applicants who could bring their experiences of psychiatry and the mental health system to their work, as well as those who had lived experiences of resisting other forms of social marginalization. The centre had research teams in five related theme areas: violence, mental health, and substance use; mental health reform and policy; criminalization,

x Preface

mental health, and addictions; recovery and housing; and reproductive and sexual mental health. All centre teams were multidisciplinary and multisectoral in their composition. The centre supported a peer-reviewed, seed grant program, which resulted in numerous original research projects and knowledge exchange activities. Annually from 2011 to 2014 all centre affiliates convened in Vancouver, British Columbia, for a series of “Critical Inquiries” workshops in which investigators presented and discussed their emerging research that linked theoretical developments related to social inequities and social justice to research, policy, and practice in mental health. These events also showcased the innovative work of scholars, activists, and artists from outside the centre’s immediate circle, thus enhancing international exchanges about critical scholarship in mental health. The centre also hosted a yearly summer training institute to advance critical theory and practice in mental health; these covered, for example, dialoguing decolonizing and Mad studies approaches in mental health, and exploring the concept of burn-out in the context of social activism. Overall the centre’s body of work has advanced the development of critical theory and methodological approaches – including feminist, intersectional, post-structuralist, critical realist, and decolonizing – for understanding and addressing structural forms of oppression, and power relations manifested in mental health and other systems that govern and regulate the lives of people experiencing mental distress. Acknowledgments The idea for this book collection was inspired by the incredibly productive exchanges that the Centre for the Study of Gender, Social Inequities, and Mental Health afforded and the numerous relationships that were built in the process. We would first like to thank the centre’s core staff (Brenda Jamer, Lupin Battersby, and, in the early years, Renée Cormier), other staff on projects (Julia Weisser), the graduate students and communitybased researchers who received centre research traineeships (Thanya AlSaadoon, Quinn Bennett, Sabina Chatterjee, Althea Crawford, Meilan Fang, Mohamed Ibrahim, Viviane Josewski, Nathalie Lozano-Neira, Ruby Peterson, and Jake Pyne), and the centre’s post-doctoral fellows (Benita Bunjun, Susan Hardie, Cindy Holmes,3 and Richard Ingram) – several of whom are contributors to this book, and all of whom made important intellectual contributions to the centre. We would like also to appreciate several individuals who worked on the centre’s advisory committee or as knowledge brokers: Cecilia Benoit, Madeline Boscoe, Beth Jackson, Cat Omura, Susan White, Jennie Williams, and branwen Willow; they made

Preface xi

significant contributions, especially to our discussions about policy and practice. We thank the many non-centre members who pushed centre collaborators’ thinking on social inequities and mental health by sharing their work and perspectives at the annual workshops and training institutes: Marion Allaart, Gord Bruyere (Amawaajibitang), Khatidja Chantler, Natalie Clark, Elizabeth Cole, Megan Davies, Parin Dossa, Eric Fabris, Adrianne Fitch, T. Garner, Rachel Gorman, Sharalyn Jordan, Mary Ellen Kelm, JoAnne Lee, Farah Mawani, Siobhan McCarthy, Zarina Mulla, Cindy Patton, Vikki Reynolds, Sara Scott, Ann Travers, Gursharan Virdee, Jijian Voronka, and Jie Yang. We also thank the centre’s research team members (see note 2 to the preface); this book would not exist without their many contributions towards creating new knowledge that promotes more socially just understandings of and responses to mental health. Finally, we thank Marguerite Pigeon for her fine editing and advice, Janine Farrell who assisted in identifying contributors, Sapna Singh for careful formatting of the manuscript, Kara Mannor for detailed proofreading, and the manuscript reviewers for their suggested revisions. From University of Toronto Press we thank our editors: Eric Carlson, Lisa Jemison, Stephen Shapiro, and Angela Wingfield. Eric believed in our ideas from the start, and Stephen and Lisa shepherded the book through its final stages. The book would not have been possible without the financial support of the Institute for Gender and Health, Canadian Institutes for Health Research, and the Simon Fraser University Publication Fund. A Note on Language Mental health and mental illness are concepts that reflect how psychiatric discourse has become naturalized. Many, ourselves included, contest their uncritical use, which (re)produce relations of power, where psychiatry is understood as the “ruling regime” (Burstow, 2013; Smith, 1987). Well aware of the importance of power in language, we struggled with how best to recognize critiques of dominant mental health discourse while engaging both individuals who radically critique psychiatry and individuals who work in mental health care, services, and supports. In addition, although this book emphasizes the role of the social in mental health, we maintain space for considerations of the complex and dynamic interrelationships among bodies, biology, and society in ways that do not dictate or favour biomedical responses. Thus, in the introduction to this volume we use a variety of terms, sometimes referring to the common language of psychiatry, but more often using terms such as mental distress, emotional distress,

xii Preface

emotional suffering, or mental difference to disrupt the power of psychiatry and, in the latter case, to signal that not all people experience changes in consciousness as distressing, and, indeed, they might see these as productive (see Fabris, 2011; O’Hagan, 2014). Likewise, contributors to this book use the language of mental health and mental illness in various ways, each according to the aims of their work. Social justice, as noted by Viviane Josewski in chapter 2, is often a poorly and inconsistently defined concept, especially in its pairing with mental health. Most discussions of mental health, and even of mental health equity, do not adequately interrogate the values or underlying epistemological and ontological assumptions guiding scholarship in this field. In our use of the term we follow Josewski in rejecting a purely distributive justice paradigm and instead promoting a critical relational concept of social justice grounded in the politics of recognition (Young, 2011), (re)distribution (Rawls, 1971), and parity of participation (Fraser, 2003). Looking Forward This book is an important contribution to the field of mental health. The collection highlights the original work of centre affiliates and others who start by recognizing that dominant research and practice paradigms in mental health are inadequate for understanding and responding to the wide array of experiences that are currently labelled and diagnosed as mental illness. Moreover, they share a concern with how government, professional, and health system values, guiding approaches, and models of care can serve to re-inscribe, rather than ameliorate, existing social and health inequities. In response, they explicitly apply emerging critical theories and methodological frameworks to knowledge production in mental health as a means of shifting the field towards social justice praxis. We intend Critical Inquiries for Social Justice in Mental Health to speak to multiple audiences – to people who have lived experiences of psychiatrization and who may be working as advocates on the front lines of the mental health system, or outside of it; to scholars and graduate students who are developing alternatives to dominant approaches in mental health; and to practitioners and policy actors who are working to create more socially just mental health systems and supports based on self-determination for people with mental distress/difference. Distinguishing this book from the outstanding radical critiques of psychiatry and the mental health care system published in recent years in the Canadian context (for example, Burstow, 2015; Burstow, LeFrançois, &

Preface xiii

Diamond, 2014; LeFrançois, Menzies, & Reaume, 2013) is its predominantly intersectional approach and its emphasis on anti-colonial critiques and decolonizing praxis, as well as transgender perspectives. Its focus is on the application of a range of critical theories, methodologies, and methods for producing knowledge that will advance social justice in mental health research, policy, and practice in Canada, other Western nations, and the global South. Critical Inquiries for Social Justice in Mental Health showcases a diverse collection of scholars, activists, and practitioners whose work intentionally exposes and disrupts normative institutional and organizational practices in mental health, such as in social and professional discourses, diagnostic practices, and media representations. Contributors not only provide critiques of the status quo but also offer cogent strategies to resist the harmful practices they document, thus charting a path to social justice in mental health. About the Editors As editors of this book who are committed to intersectional and self-­ reflexive praxis, we want to briefly situate ourselves and make visible our social positions, experiences, and commitments, which may inform the ways in which readers take up our work. Marina Morrow is a Canadian-born, White settler with European roots. Marina came to social justice work through her engagement with feminist anti-violence activism as an agitator and a front-line worker in rape crisis centres and shelters in British Columbia and Ontario. She returned to graduate school in order to make sense of the stories of the women that she had witnessed, which often included abuse at the hands of psychiatry, and to understand better the social and structural origins of oppression. These early experiences laid the foundation for the next two decades of her research, which have focused on interrogating the social, political, and institutional processes through which health and mental health policies and practices are developed, and on tracking mental health reforms in the context of neoliberal political regimes. Marina was pivotally involved in the genesis of the Centre for the Study of Gender, Social Inequities, and Mental Health and, as its director, played a key role in the centre’s development. Lorraine Halinka Malcoe was reared in a working-class, non-traditional, bi-racial family in the United States; she is racialized as White, the granddaughter of immigrants, and a reluctant re-settler of Turtle Island. Trained as a social epidemiologist, she has increasingly become dismayed with the limited theoretical, epistemological, and ethical foundations of

xiv Preface

research, education, and practice that are dominant in the fields of public health and mental health. In her research Lorraine has collaborated with Indigenous nations, community-based researchers, community organizations, and activists to address health inequities, child health, mental health, mass incarceration, and violence against women. She develops social justice–centred approaches to her work and activism by drawing on critical race, intersectional, and decolonial scholarship and on social movements and community knowledge, and by listening to those who have experience in resisting multiple forms of marginalization. From its inception Lorraine was integrally involved in the Centre for the Study of Gender, Social Inequities, and Mental Health, and she served as the director of training and as a co-leader of the Violence, Mental Health, and Substance Use team.

NOTES 1 The Centre for the Study of Gender, Social Inequities, and Mental Health (2009–15) was funded by the Institute for Gender and Health of the Canadian Institutes of Health Research. Marina Morrow was the centre’s director and principal investigator. For more detail on the centre’s activities see http://www .socialinequities.ca. 2 For a list of the centre’s co-investigators see http://www.socialinequities.ca/ about/team-and-bios/. 3 Cindy Holmes was funded separately through the Michael Smith Foundation for Health Research. REFERENCES Burstow, B. (2013). A rose by any other name: Naming and the battle against psychiatry. In B.A. LeFrançois, R. Menzies, & G. Reaume (Eds.), Mad matters: A critical reader in Canadian Mad studies (pp. 79–90). Toronto: Canadian Scholars’ Press. Burstow, B. (2015). Psychiatry and the business of madness. New York: Palgrave Macmillan. http://dx.doi.org/10.1057/9781137503855 Burstow, B., LeFrançois, B.A., & Diamond, S. (Eds.). (2014). Psychiatry disrupted: Theorizing resistance and crafting the (r)evolution. Montreal: McGill-Queen’s University Press. Fabris, E. (2011). Tranquil prisons: Chemical incarceration under community treatment orders. Toronto: University of Toronto Press.

Preface xv Fraser, N. (2003). Social justice in the age of identity politics: Redistribution, recognition, and participation. In N. Fraser & A. Honneth (Eds.), Redistribution or recognition? A political-philosophical exchange (pp. 7–88). London: Verso. LeFrançois, B.A., Menzies, R., & Reaume, G. (Eds.). (2013). Mad matters: A critical reader in Canadian Mad studies. Toronto: Canadian Scholars Press. O’Hagan, M. (2014). Madness made me: A memoir. Wellington, New Zealand: Open Box. Rawls, J. (1971). A theory of justice. Cambridge, MA: Harvard University Press. Smith, D. (1987). The everyday world as problematic: A feminist sociology. Toronto: University of Toronto Press. Young, I.M. (2011). Justice and the politics of difference (2nd ed.). Princeton, NJ: Princeton University Press.

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CRITICAL INQUIRIES FOR SOCIAL JUSTICE IN MENTAL HEALTH

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Introduction: Science, Social (In)Justice, and Mental Health lorraine halink a malcoe and marina morrow

Social injustice abounds in mental health1 policy and practice. In far too many societies – past and present – it has been commonplace and socially acceptable for people labelled as mentally ill to be treated as non-persons. People with emotional distress or mental difference have been feared, derided, stigmatized, criminalized, and brutalized; their behaviours, mobility, and life chances have been routinely restricted and blighted through institutional and interpersonal discrimination and coercive practices (including in housing, employment, education, policing, and courts) and through paternalistic and forced medical and psychiatric “treatments,” including institutionalization, imprisonment, and compulsory community treatment (Appignanesi, 2007; Burstow, 2015; Chapman, Carey, & Ben-Moshe, 2014; Fabris, 2011; Foucault, 1961/2006; Foucault, 1965/1988; Gomory, 2002; Porter, 2002; Warme, 2013). Indeed, in many Western countries, including Canada, mental health inequities continue to be actively promoted by the state, its institutions, and the “helping” professions – purportedly in the best interests of the “mentally ill” – through myriad laws, social policies, and practices that severely restrict the rights, freedoms, and capabilities of people with (presumed) mental illness diagnoses (Burstow, 2015; Chammartin, Ogaranko, & Froese, 2011; Metzl, 2009; Morrow, Wasik, Cohen, & Perry, 2009; Perlin, 1992; Shimrat, 2013). Despite the pervasiveness of mental health injustices, not all people who have been labelled as mentally ill experience the same kind or degree of societally induced harms. Their positions in prevailing social hierarchies – organized by shifting boundaries of race, gender, social class, sexuality, physical ability, age, etc. – profoundly shape those experiences. For example, mental illness diagnosis has long been used as a form of social control against women, lesbian, gay, transgender, working-class, and Black communities

4  Lorraine Halinka Malcoe and Marina Morrow

(Caplan, 1987; Caplan & Cosgrove, 2004; Metzl, 2009; Tosh, 2011; Ussher, 1991). Children and elderly people have also been subjected to disproportionate diagnoses and psycho-pharmaceutical treatments (LeFrançois & Coppock, 2014; Mills, 2014; Olfson, King, & Schoenbaum, 2015). For example, electroconvulsive therapy (ECT, formerly known as electroshock therapy), which has been clearly shown to cause permanent brain damage and memory loss, is most often used on elderly women (60–65 years and older) and even on children (Burstow, 2015; van Daalen-Smith, Adam, Breggin, & LeFrançois, 2014; Weitz, 2013). Moreover, Indigenous people with emotional suffering have experienced severe and disproportionate state violence – including death – due to processes of settler colonialism enacted through law and medicine. As Razack’s (2013) analysis of Indigenous deaths in custody has shown, a presumed diagnosis of alcoholism, “a problem that began in colonialism” (p.  359), is used to explain away the excessively high numbers of Aboriginal people who die in police custody in British Columbia, “with the inevitable consequence that [these deaths] cannot be connected to the violence of an ongoing colonialism” (p. 352). Science – or what has stood for science – has produced the knowledge, the “evidence,” that undergirds and enables these injustices. Although understandings of mental health and illness are generated across a range of disciplines – including sociology, anthropology, Indigenous studies, philosophy, literature, and history – only certain kinds of evidence are mobilized by professionals, media, governments, academics, and policymakers who most influence the development of mental health systems (Thachuk, 2011). In particular, biomedicine – including the “psy-” sciences (Rose, 1998), neurobiology, pharmacology, and epidemiology – has essentially driven out other explanatory frameworks of mental health, especially within academic knowledge production and knowledge that emerges from the state (including the police, the criminal legal system, and the child welfare system) (Burstow, 2015; Chan, Chunn, & Menzies, 2005; and see in this volume Boyd, Murray, & NAOMI Patients Association, and also Morrow). Attention to biomedical evidence production that shapes mental health policy and practice reveals that much of it serves to maintain status quo power relations, thereby sustaining and deepening social inequities (Mills, 2013; Morrow, 2013). In contrast to mainstream knowledge production, Critical Inquiries for Social Justice in Mental Health produces counter-knowledge. As a whole the collection demonstrates that experiences of emotional suffering and mental difference occur within wider historical, structural, cultural, and political contexts – locally and globally – that fundamentally influence how mental

Introduction 5

health issues are framed, named, and studied; how mental health treatment, care, and supports are conceived and implemented; and how all of these are experienced by individuals, their families and friends, and society at large. Contributors elucidate theory-driven research and analysis grounded in new applications of Mad studies and intersectional, feminist, decolonial, poststructural, queer, transgender, and other critical methodologies that interrogate power relations among societal actors, the state, and other oppressive systems. They tackle the foundations of biomedicine through analyses of diagnostic regimes, discourses, historical and new media, and institutional and organizational practices. They document diverse strategies for resisting the dehumanizing and harmful practices embedded in mental health research, service delivery, and policy. As well, contributors offer new ways to reimagine the research process, including methodologies for decolonizing mental health on local and global scales, and participatory, arts-based, and intersectional methods for producing knowledge that advances socially just mental health praxis. In what follows we provide a deeper analysis of dominant approaches to mental health research and clarify key critical theories taken up by contributors. We then provide an overview of the book’s organization and chapters. We end by detailing three tangible social justice strategies – illuminated across chapters – for transforming mental health research so that the knowledge produced fosters equity for all people who experience mental distress/difference. Dominant Ideologies, Epistemologies, and Praxis in Mental Health Mental health has been receiving unprecedented public and policy attention in Canada and other Western nations (Friedli, 2009; Hogan, 2003; Kirby & Keon, 2006; Mental Health Commission of Canada [MHCC], 2009; MHCC, 2012). Worldwide there have been strong calls to action from professional sectors – such as editorials in The Lancet and via policy statements and reports of the World Health Organization (WHO) (Horton, 2007; Thornicroft, 2007; World Health Organization [WHO], 2013) – and competing calls from scholars deeply critical of the WHO and biomedical global mental health approaches (see Mills and also Ibrahim in this volume). The official story of mental health being told by biomedicine increasingly claims that all forms of emotional suffering are “disorders” (Thachuk, 2011; Whitaker, 2010) and that “mental illness” is a major contributor to the total global burden of disability and disease (Bloom et al., 2011). Biomedicine

6  Lorraine Halinka Malcoe and Marina Morrow

claims further that it has developed effective methods of screening, diagnosis, and treatment for these disorders (Thachuk, 2011) and thus calls for psychiatric and especially pharmaceutical mental health “services,” including in institutionalized “community” settings (Pearson, Janz, & Ali, 2013; Sunderland & Findlay, 2013; Thornicroft, 2007; WHO, 2001, 2013). Absent from this official story are perspectives and forms of evidence that start with an analysis of power and consider the social, political, cultural, and economic production of mental health problems and solutions. Absent too are the diverse voices of experience – psychiatric survivors and others who have lived with various forms of social marginalization and (not unrelated) emotional suffering and thus have important knowledge regarding the utility of mental health reforms, supports, treatment, and care (for example, Burstow, LeFrançois, & Diamond, 2014; Capponi, 1992; Millet, 1990; Nana-Ama Danquah, 1999; Shimrat, 1997). The limits of biomedicine are largely due to its adherence to reductionism, biological determinism, individualism, and unfounded notions of objectivity. As Krieger (2011) has explained, a fundamental postulate of biomedicine is that “the parts” explain “the whole,” which is both an “ontological and epistemological” stance because it “makes claims about both how the world works and how it can be known” (p. 136). In terms of understanding population-level distributions of disease, Krieger argues that biomedicine is premised on a set of three underlying ideological commitments: “it emphasizes biological determinants of disease amenable to intervention through the health-care system, considers social determinants of disease to be at best secondary (if not irrelevant), and views populations simply as the sum of individuals …” (p. 137). Under biomedicine the question of population distributions of disease becomes “a question of disease in individuals, which in turn is reduced to a question of biological malfunctioning” (Krieger, 2011, p. 137). In the mental health field, mental illness is seen and presented as an objective material biological problem, located within the individual, and separate from culture and society. The solutions to mental illness – and even to social inequities in mental illness – are likewise confined to the individual and the biomedical. As Krieger further explicates, “this biologic substrate, divorced from its societal context, thus becomes the optimal locale for interventions, which chiefly are medical in nature” (p. 137). Yet, the social matters deeply. Historical analyses demonstrate that our understanding of – and labels for – human experiences and responses have not only varied dramatically across socio-cultural contexts but too often have been in support of dominant oppressive structures (Appignanesi, 2007;

Introduction 7

Foucault, 1961/2006; Foucault, 1965/1988; Metzl, 2009; Shorter, 1998, 2008; Ussher, 1991; Watters, 2010). For example, in the United States during the rise of the Black Power movement in the 1960s, diagnoses of schizophrenia shifted away from women to being applied primarily to Black men as a way of blunting and punishing social activism (Metzl, 2009). As well, a host of ­diagnoses have been applied specifically to women to describe a range of responses to sexism and life transitions like menopause (Appignanesi, 2007; Ussher, 1991; see Morrow and also Ussher & Perz in this volume). One exemplary case study concerns largely working-class young women and adolescent girls at the State Training School in Illinois in the late 1800s and early 1900s: enacting notions of sexual purity based on eugenics ideology and social divisions of gender, race, class, and sexuality, (mostly) women reformers and professionals labelled these women as “sex delinquents” and “mentally defective” and then disciplined them via involuntary commitment laws (Rembis, 2011). The effects of biomedical thinking are simultaneously pervasive and largely unnoticed, extending far beyond the boundaries of biomedicine: “biomedicine speaks … through the implicit ways that it teaches us to interpret ourselves, our world, and the relationships between humans, nature, self, and society. It draws upon and projects cosmology (ways of ordering the world), ontology (assumptions about reality and being), epistemology (assumptions about knowledge and truth), understandings of personhood, society, morality, and religion (what is sacred and profane) [all italics in the original]” (Gordon, 1988, p. 19). Despite the profound ways that biomedicine shapes society, far beyond what it can demonstrate scientifically, biomedicine still claims objectivity for itself. As Gordon (1988) articulates, “although biomedicine both constitutes and is constituted by society, this interdependency is nevertheless denied by biomedical theory and ideology which claim neutrality and universality” (p. 19). These claims to scientific objectivity are directly related, within mental health, to biomedicine’s upholding of scientists, academics, and physicians as the sole experts capable of defining disease (or health), framing research, and proposing solutions. Still, the claimed benefits of biomedical understandings and solutions in mental health are increasingly being questioned, including from within the “psy-” disciplines. For example, there is mounting evidence of the iatrogenic harms of its most heavily promoted approach – the use of psychiatric medications (Bielefeldt, Danborg, & Gøtzsche, 2016; Gøtzsche, 2015; Moncrieff, 2009). Clinical studies show the limited long-term effectiveness of pharmaceutical solutions and indicate that anti-psychotics (often used

8  Lorraine Halinka Malcoe and Marina Morrow

to treat diagnoses of schizophrenia), benzodiazepines (used to treat diagnoses of anxiety), and anti-depressants too often cause dependence, impede people’s functioning and recovery, and lead to worse long-term outcomes (for example, Barker, Greenwood, Jackson, & Crowe, 2004; Gøtzsche, 2015; Nielsen, Hansen, & Gøtzsche, 2012; Whitaker, 2004). Moreover, attempts to even agree on the cluster of symptoms that warrant a diagnosis of mental illness have been hotly debated, as evidenced in the historical and current debates surrounding the successive revisions to the Diagnostic and Statistical Manual of Mental Disorders (DSM) that practitioners use to inform diagnosis and treatment (British Psychological Society, 2013; Caplan, 1987; Caplan & Cosgrove, 2004; Frances, 2013; see in this volume Morrow, Tosh, and also Garner). Evidence production and responses to mental distress are also shaped within particular social policy contexts (Morrow, 2013; Morrow et al., 2009; see also Morrow in this volume). In Canada substantive social policy changes over the past twenty years (Finkel, 2006), coupled with the ongoing erosion of community-based and peer-run mental health supports, have entrenched clinical and biomedical responses to mental health concerns (Morrow, Frischmuth, & Johnson, 2006; Morrow, Wasik, Cohen, & Perry, 2009). In the global context – where austerity measures and the expansion of neoliberal political paradigms have promoted individualistic understandings of complex social problems – capitalism and market domination, through the will of corporations, call on individuals to assume the roles and risks of the state (Braedley & Luxton, 2010; Brodie, 2007). Under neoliberalism, people with lived experiences of mental distress – especially those simultaneously marginalized by multiple oppressive systems – are pathologized, criminalized, and disempowered by the state and medical care systems (Metzl, 2009; Morrow, 2013). Neoliberalism also erodes social justice in mental health by severely limiting access to mental health care systems and supports, while buttressing pharmaceutical solutions (Morrow et al., 2009; Whitaker, 2010; also Morrow in this volume). Critical Theories for Social Justice in Mental Health In this book we do not limit the term critical theory to its classical philosophical articulation, which arose out of the neo-Marxist focus of the Frankfurt School, but rather consider it a set of ideas that “views thinking critically as being able to identify, and then to challenge and change, the process by which a grossly iniquitous society uses dominant ideology to convince people this is a normal state of affairs” (Brookfield, 2005, p. viii).

Introduction 9

Thus, critical theory is explicitly tied to social justice aims. It analyses power and power relations, as well as the shared assumptions, problem formations, and commitments of disciplinary discourses. Of importance to mental health research, critical theoretical approaches disrupt and eschew binaries (for example, sex/gender, ability/disability, objective/subjective) that serve to reinforce dominant ideologies and reproduce injustices. As well, we include non-Western epistemologies, such as Indigenous knowledges and decolonizing methodologies, under the umbrella term of critical theory because of their fundamental concerns with undoing both the ideological and the material harms of colonialism, and with promoting the self-determination and sovereignty of Indigenous Peoples (Smith, 2012). In accordance with the book’s emphasis on exposing and disrupting dominant relations of power, we employ Josewski’s critical relational conception of social justice (chapter 2 herein), which she argues is most applicable to the forms of justice called for by Indigenous, Mad, and disabled people’s movements. Josewski develops this concept, drawing on Young’s (2011a) articulations of the politics of difference and of recognition and on Fraser’s (2003) notion of “parity of participation,” which locates justice in social arrangements that remedy both misrecognition and maldistribution. As Josewski explains, Fraser (2003) argues that material resources must be distributed “to ensure participants’ independence and ‘voice’” and that “the institutionalized cultural patterns of interpretation and evaluation [must] express equal respect for all participants and ensure equal opportunity for achieving social esteem” (p. 5). Adding to Young and Fraser, Josewski employs intersectional analysis and praxis to operationalize the critical relational nature of social justice in mental health policy, practice, and research and to advance critical scholarship directed at eliminating structural inequities in mental health. In defining social injustice in mental health, we turn to Young’s (2011b) notion of structural injustice. As she delineates, structural injustice occurs when “many policies, both public and private, and the actions of thousands of individuals acting according to normal rules and accepted practices contribute to producing [unjust] circumstances” (Young, 2011b, pp. 47–8). Thus, the realization of social justice in mental health requires exposing (a) the specifics of how socio-structural processes – enacted by multiple oppressive systems and the individuals within them – stigmatize and constrain the choices of people diagnosed with mental illness; (b) how these processes (re)produce and maintain inequitable life chances across socially defined populations; and (c) how medical, pharmaceutical, legal, and criminal systems, as well as the media, create hegemonic discourses

10  Lorraine Halinka Malcoe and Marina Morrow

that construe social problems as the fault and responsibility of individuals. Contributors to Critical Inquiries for Social Justice in Mental Health take up this call for an analysis of structural injustice by applying a range of critical theories to elucidate socio-structural processes operating within mental health research and across state institutions and mental health systems, to imagine alternatives to dominant biomedical and neoliberal discourses and practices, and to provide strategies for developing equity-enhancing individual, societal, and community-level mental health responses. The study of sanism is likewise important for understanding social (in)justice in mental health. Sanism has been defined as “the irrational prejudices that cause, and are reflected in, prevailing social attitudes toward mentally disabled persons, and those so perceived” (Perlin, 1999, p. 4). The concept has been used to draw “attention to a broad set of values associated with the idea of sanity, and unsettl[e] the status of those values as self-evidently superior” (Ingram, 2011, p. 2). Scholars who use sanism as their starting point often identify with the Mad movement and Mad studies, both of which seek to challenge medicalized, individualized models of mental health and to reclaim the idea of madness as a positive and productive identity (Burstow, 2015; LeFrançois, Menzies, & Reaume, 2013). Through the paradigm of intersectionality, sanist ideology and practices are seen to be intimately interconnected with other oppressive systems. Intersectionality as a concept emerged most recently from the writing and social justice activism of U.S. Black women, especially during the second wave of feminism in the United States (Collins, 1986, 2000; Combahee River Collective, 1977; Davis, 1981). In part, Black women proponents of intersectionality were contesting the claims from many White feminists that gender should hold an exalted place (both as an analytic tool for understanding oppression and as a rallying point for activism) over other forms of oppression arising from racism and capitalism. The term intersectionality was coined by Kimberlé Crenshaw in the context of legal studies and the development of critical race theory (Crenshaw, 1989, 1991) to elucidate how oppressive systems and institutions are mutually reinforcing. However, without naming it as such, intersectionality has been theorized by Indigenous women activists and activists in the global South since at least the nineteenth century (Clark, 2016; Collins & Bilge, 2016, p. 3). Central to intersectional theorizing is that, “when it comes to social inequality, people’s lives and the organization of power in a given society are better understood as being shaped not by a single axis of social division, be it race or gender or class, but by many axes that work together and influence each other” (Collins & Bilge, 2016, p. 2).

Introduction 11

Many feminist scholars and activists have embraced intersectionality for its analytic power in explaining interlocking “processes of differentiation” (such as racialization and gendering) (Dhamoon, 2011) and the resulting penalties and privileges produced by systems of domination – colonialism, racism, sexism, heterosexism, ableism, capitalism, and sanism (for example, De Leeuw & Greenwood, 2011; McCall, 2005; Morris & Bunjun, 2007; Roberts & Jesudason, 2013; Viruell-Fuentes, Miranda, & Abdulrahim, 2012). Seen as essential for understanding oppression in its multiple forms, intersectionality foregrounds lived experience – that is, people’s own descriptions and understandings of their lives. In mental health, applying intersectionality requires that our analyses begin from the diverse knowledges of people who have experienced psychiatrization, emotional suffering, and/or mental difference and who have resisted – individually and collectively – societal and institutional stigmatization, discrimination, disempowerment, and dehumanization. However, even lived experience can be co-opted. Indeed, the stories of psychiatric survivors have been appropriated by mental health organizations and professionals to legitimate their work – what Costa et al. (2012) refer to as “patient porn” because of the ways in which these practices exploit survivors for the careers and aims of professionals. Thus, intersectionality also foregrounds bottom-up decision-making processes – what Spade (2011) has labelled “trickle-up social justice” – that are wholly accountable especially to those who are experiencing the worst manifestations of intersecting oppressive systems. There is now a burgeoning intersectional scholarship emerging in mental health and Mad studies (Burman & Chantler, 2003; Gorman, 2013; Rossiter & Morrow, 2011; Tam, 2013). For example, Kanani (2011), in her review of U.S. and Canadian literature on race and madness, illustrates how the co-construction of these social concepts has justified historical and ongoing colonialism and racism, including slavery and exclusionary immigration policies. Her close reading of the literature reveals the historical “relationship between colonization, psychiatry and the construction of the abnormal, racialized, other” (p. 3), as well as how diagnostic practices, ECT, and other seriously harmful psychiatric treatments have been used to socially control and punish people of colour. In another example, this one on the intersections of age, sexism, and sanism, Burstow documents the contemporary disproportionate use of ECT in the “treatment” of elderly (mostly middle-class, White) women diagnosed with depression, despite clear evidence of its long-term and permanent harms (Burstow, 2006, 2015; van Daalen-Smith, 2011). Indeed, a

12  Lorraine Halinka Malcoe and Marina Morrow

comprehensive multi-site, multi-instrument prospective study of the cognitive effects of ECT found that women suffered greater and more persistent cognitive damage than did men following ECT, and that “adverse cognitive effects … characterize routine treatment with ECT in community settings” (Sackeim et al., 2007). Burstow (2006) argues that “ECT constitutes … state-sponsored violence against our most vulnerable sisters … [it is] an act of violence in a web of violence committed both by a total institution [psychiatry] authorized by the state and by patriarchal society more generally” (pp.  119–20). Linking this scholarship to social justice praxis, many scholars and anti-psychiatry activists, including Burstow, have called for a ban on ECT (Burstow, 2006, 2015; Weitz, 2013). As intersectionality theory and praxis have travelled away from their roots in feminist activism and scholarship by women (and queer people) of colour, their potential for advancing social justice has been muted, particularly in some formulations taken up by academic feminism (Bilge, 2013). To avoid “doing intersectionality in ways that undo it [italics in original],” Bilge (2013, p. 411) argues that intersectionality must be reconnected with “the political subjectivities and struggles [of] less powerful social actors facing multiple intertwined oppressions.” Reconnecting intersectionality to its politicized roots requires understanding intersectionality not only as an analytic lens and methodology for research but also as “a powerful tool to build more effective alliances between movements to make them more effective at organizing for social change” (Roberts & Jesudason, 2013, p. 313). Several book contributors take up this challenge by linking their intersectional analyses of mental health systems, policies, and practice to social movements and to organizing for social justice. Organization and Chapters Critical Inquiries for Social Justice in Mental Health is organized into five sections: (1) Foregrounding Social Justice Theorizing; (2) Decolonizing Research and Practice; (3) Gendering, Discourse, and Power; 4) Media as a Site of Social (In)Justice; and (5) Refashioning Research for Social Justice Praxis. As a whole the collection demonstrates why and how theory matters for knowledge production, policy, and practice in mental health, and it offers a multitude of critical research approaches for producing knowledge beyond the biomedical and neoliberal status quo. The book begins by delving into critical theory and its intimate connections to grassroots struggles for social justice in mental health, and ends by elucidating specific methods for integrating theory, research, and practice to achieve socially just mental

Introduction 13

health praxis. In between, contributors delineate approaches for decolonizing mental health, discursive methods for illuminating the politics of mental health policy and practice across the gender spectrum and diversity of people who experience emotional distress, and media analyses that illustrate the dynamic workings of power, including the power to resist.

Foregrounding Social Justice Theorizing Part 1 presents the theoretical foundation of the book. Contributors provide new articulations of major critical theories – intersectionality, feminist, Mad studies, social justice, and decolonial – for the purpose of reframing mental health scholarship and practice to foreground social justice and to produce evidence in support of transformational social change. Using multiple critical theoretical lenses, part 1 allows the reader to reimagine the possibilities of equity-oriented mental health research and praxis that could be truly inclusive of all peoples and communities, locally and globally, who experience mental distress/difference, and especially those with interlocking disadvantaged positions in social hierarchies based on race, social class, indigeneity, gender, citizenship, sexuality, ability, and age. In chapter 1 Marina Morrow explores the parallel histories, theories, and tensions arising from early feminist critiques of psychiatry and the antipsychiatry and mental patients’ liberation movements. Drawing from the Canadian context, she interrogates the discursive regime in mental health within the current neoliberal political climate, illustrating how biomedicalism and neoliberalism have enabled systemic oppressions. Morrow advocates for a new and more socially just approach for naming and responding to mental distress – that of combining the frameworks of intersectionality and Mad studies. In the face of the power invested in psychiatry, Morrow argues that an intersectional Mad studies approach holds the best theoretical potential for producing liberatory knowledge, social change, and social justice in mental health. In chapter 2 Viviane Josewski delves deeply into social justice theorizing. She asks, “Which dimensions and whose social justice claims are underexamined in the analysis, why, and to what effect?” Her critical reading of multiple, competing social justice theories reveals the limits – and potential harms – of conceptualizing the root causes of (and remedies to) mental health inequities solely through a (re)distributive justice paradigm. She turns to intersectionality and a critical relational understanding of social justice in mental health that addresses issues of redistribution and recognition through Fraser’s (2003) notion of “parity of participation.”

14  Lorraine Halinka Malcoe and Marina Morrow

Josewski emphasizes our ethical and political responsibilities for generating action-oriented knowledge that addresses the relational and intersectional nature of the multiple injustices undergirding structural inequities in mental health. China Mills (chapter 3) takes on a crucial – and too often ignored – analysis of the entanglements of psychiatry and colonialism: how the colonies were central to the development of “global psychiatrization” – the “universalization, pathologization, and biologization of distress” – and not only how psychiatry was, and is, a key tool of colonialism but also how psychiatry itself can colonize. She delineates the processes through which psychiatrization and colonialism have sought to destroy and erase diverse ways of “knowing, being, and doing” and of understanding distress, while naturalizing oppression and pacifying resistance. She traces the ongoing efforts by the World Health Organization and the Movement for Global Mental Health to reconfigure and diagnose the effects of global social injustices as “mental illness” requiring medical, psychiatric, and pharmaceutical solutions. Mills ends by highlighting ongoing resistance to the hegemony of psychiatric knowledge systems, in the form of local knowledge and in userand survivor-led movements worldwide.

Decolonizing Research and Practice Across the globe Western-centric, colonizing, and racist practices are embedded in the mental health systems that are supposed to support people with mental distress, and in the research that disregards the histories and knowledges of Indigenous communities. Part 2 takes up this challenge by providing methodological approaches for decolonizing mental health systems, research, and everyday social justice praxis. The contributions build on the works of other Indigenous activists, scholars, and allies who are striving to restore traditional healing practices and Indigenous worldviews as these relate to mental wellness (Browne et al., 2009; Mussel, Cardiff, & White, 2004; Tait, 2008; Williams & Mumtaz, 2008), and on the works of those who are bringing Indigenous knowledges to the practice of research (for example, Tuhiwai Smith, 2012). Mohamed Ibrahim (chapter 4) examines colonial psychiatry across the African continent and the decolonizing efforts to resist and replace it. Referencing his own practice as a psychiatric nurse in Kenya, Ibrahim compellingly traces the historical and ongoing practices and effects of biomedicine and psychiatry as agents of the colonization, oppression, and racialization

Introduction 15

of Africans. He thereby illustrates the ongoing legacy of colonialism, where Indigenous spiritual and health practices have been actively undermined and replaced by Western psychiatric practices, leading to harmful practices and, too often, to gross human rights violations. Ibrahim calls for indigenizing, decriminalizing, and de-stigmatizing mental health. He ends by describing the galvanizing work of Africa-wide and global movements of consumer and psychiatric survivor activists to decolonize and democratize mental health systems. In chapter 5 Ruby Peterson and Sabina Chatterjee tap into the powerful legacy of open discussion and storytelling in Indigenous knowledge traditions. Rooted in their multiple identities, including as allies (Peterson as an Indigenous woman, and Chatterjee as a mixed – Indian and German – woman of colour), they use a dialogical approach to convey the benefits and costs of structural violence and colonial oppression, while engaging decolonization as everyday practice. Through their shared stories and conversations they highlight the strengths of dancing with complexity – a means of honouring Indigenous history, cultures, and Peoples while holding different standpoints and identities. Drawing on Indigenous teachings of connectedness – where “wholeness is the foundation” (italics in original) – they show how this dance helps them stay committed to social justice advocacy while operating within “structurally violent silencing systems.” Natalie Clark, Patrick Walton, Julie Drolet, Tara Tribute, Georgia Jules, Talicia Main, and Mike Arnouse (chapter 6) present methods for decolonizing research in their exploration of identity, culture, and mental health among urban Indigenous youth in Canada. The authors worked with Elders, urban Indigenous youth, community partners, and Indigenous university faculty and allies, using a participatory action research design informed by an Indigenous intersectional framework and Indigenous ethics. Their findings unsettle fixed concepts of indigeneity, gender, and sexuality and demonstrate how mental health systems based on Western value systems can damage the bodies and identities of Indigenous youth. By centring the voices of their participants, Clark et al. created new research and knowledge, including new narratives about mental health that avoid illness as a starting point.

Gendering, Discourse, and Power Part 3 presents critical theory approaches for analysing how people both contest and make use of pathologizing discourse, how gender formations

16  Lorraine Halinka Malcoe and Marina Morrow

and responses to emotional distress and mental difference are governed in medical and workplace contexts, and how they intersect with other categories of marginalization and difference (such as disability and citizenship). Feminist and transgender perspectives are absent from most mental health research, policy, and service design. Contributors in part 3 use critical realist, feminist, Foucauldian, and transgender approaches to reveal how medical and psychiatric diagnostic categories (including “gender dysphoria” and “premenstrual dysphoric disorder”), and neoliberal business and government initiatives on workplace depression, surveil bodies, reify sex/gender binaries, and maintain inequitable social hierarchies. As well, contributors discuss possibilities for advancing social justice in mental health policy and practice. Jane Ussher and Janette Perz (chapter 7) adopt a critical realist epistemology to explore diverse women’s lived experiences of menstruation, premenstrual change, and premenstrual distress. Their material-discursive-intrapsychic model allows for an understanding of women’s embodied and psychological experiences of premenstrual syndrome (PMS) within the material and relational context of their lives. They contrast two empirical studies (one of primarily Anglo-Australian women and one of Assyrian and Karen women who came to Australia as refugees). Their findings show that, for Anglo-Australian women, the pathologized view of PMS negated not only women’s strategies for coping with cyclical bodily changes but also the sometimes-positive effects of premenstrual change. In contrast, the Assyrian and Karen women did not always associate negative premenstrual change with biomedical diagnoses like PMS; rather, their experiences of premenstrual change were shaped by gender, class, and migration. In chapter 8 Katherine Teghtsoonian supplements Foucault’s analytic of governmentality with a feminist approach in order to analyse business and government responses to depression in the workplace and, in particular, their relationships to “neoliberalism as a governing ethos” and to the production and effects of systemic inequities. Teghtsoonian argues that Foucault’s concept of governmentality can reveal how governing practices in the workplace become aligned with neoliberal policy orientations and government goals, to frame workplace distress as a problem of individuals’ lack of adjustment to their work environments. Yet, drawing on Li (2007), Teghtsoonian contends that governmentality fails to provide insight into the relationships among political-economic processes, neoliberalizing policies, and mental distress as these operate in the workplace and, especially, in motivating activism and social change.

Introduction 17

Jemma Tosh (chapter 9) applies a critical feminist approach – which draws on transgender, critical psychology, post-structuralist, and intersectionality perspectives – to provide a critical historical overview of the pathologization of gender non-conformity by psychiatry. She then extends these critiques to current psychiatric diagnostic practices. Tosh discursively analyses the current DSM diagnostic category of gender dysphoria, showing how it can be seen as a form of organized psychiatric non-compliance. Although psychiatry pathologizes non-compliance (with medical gender assignments), Tosh illustrates its liberatory potential for all who are excluded by psychiatry. She details how feminist, trans, intersex, and queer activists have organized around non-compliance to increase accessibility for gender-affirmation procedures, to depathologize transgender identities, and to envision trans-led medical systems and “a future for gender nonconforming individuals without psychiatry.”

Media as a Site of Social (In)Justice in Mental Health Many critics have analysed mass media as a site for reproducing dominant social discourses about mental distress that reinforce power structures and limit the lives of people experiencing distress (for example, Olstead, 2002; Ward, 1997). Now, with the emergence of new media landscapes, the rules are changing; there are openings to disrupt negative portrayals of people with mental distress, but there are also avenues for corporations (including Big Pharma), government, and others in power positions to shore up status quo ideas about mental illness. Part 4 exposes the power of traditional and new media (including online forums, multi-platform campaign materials, and archival educational documentaries) to shape societal understandings of and responses to emotional distress and mental difference. It also explores how individuals and activists can harness media for social justice aims. T. Garner (chapter 10) contrasts online narratives describing the lived experiences of two groups of men who seek chest surgery to remove unwanted breast tissue – cis men (whose bodily sex aligns with their gender identity) and men who are medically defined as transsexuals. Exploring how these men use online communities to negotiate, perpetuate, and resist medical and psychological understandings of their experiences, Garner’s analysis offers new ways to understand how access to these surgeries is governed by medicine. Medicine acknowledges the distress of cis men with “excess” breast tissue, but only trans men’s distress and desire for chest surgery are pathologized through a mental illness diagnosis of gender

18  Lorraine Halinka Malcoe and Marina Morrow

dysphoria. Garner shows how experiential narratives generate important knowledge, which can promote social change that upholds “difference as difference” rather than “difference as deviance.” In chapter 11 Tanya Titchkosky and Katie Aubrecht use an interpretive sociology lens to ask, “What images of people, problems, and adequate responses are entering the lives of those targeted by awareness campaigns through the ubiquitous mental illness discourse on prevalence?” Using content analysis of publications about mental health that are circulated by global organizations, national governments, agencies, and corporations, Titchkosky and Aubrecht illustrate the pedagogical intent of this material as convincing the public that mental illness is an omnipresent problem that is poorly addressed. They contest this discourse and reveal how it is implicated in processes of social exclusion and in the rationalization of social inequality. They invite examination of assumptions about prevalence and the ways that this discourse operates within the context of public health to justify particular interventions. Wendy Chan and Dorothy Chunn (chapter 12) apply an intersectional analysis to documentary films and television programming between 1940 and 1969. They examine the social construction of madness and mental illness portrayed in films that target the clinical education of mental health professionals and experts, and in public educational films that target ­middleand working-class parents and their children. Chan and Chunn’s analysis illustrates the dominance, during the post–Second World War period, of the eugenics notion of “mental hygiene,” as well as the competing beliefs in the social causes of “deviant” behaviour and in the “psy-” or medical model of mental illness. They reveal how both the social and the “psy-“ approaches are premised on the unwavering faith in experts and their ability to determine what constitutes “normal” behaviour. This chapter demonstrates the value of intersectional and historical analyses for contemporary struggles that seek to deconstruct common-sense images of people with mental distress or mental difference.

Refashioning Research for Social Justice Praxis In the final section, authors develop and apply critical methodologies for conducting ethical research that produces knowledge and evidence for advancing social justice in mental health. Although much criticism has been levelled at the dominance of biomedical knowledge production in mental health, less scholarship has focused on developing new research strategies to counter its dominance. Here contributors draw on multiple critical theories (including

Introduction 19

intersectionality and queer theory) to detail evolving research approaches such as participatory and arts-based methods, feminist critical discourse analysis, and a new conceptual framework designed to shift knowledge production in mental health so that it is informed by and responsive to the direct experiences and activism of people whose lives are most negatively affected by powerful decision makers operating within oppressive systems. Feminist participatory action research has long been seen as one way to enact social change through the research process (Creese & Frisby, 2011). However, projects that are genuine collaborations between researchers and social activists are rare. Susan Boyd, Dave Murray, and the North American Opiate Medication Initiative (NAOMI) Patients Association (NPA) illustrate the power of this bottom-up approach (chapter 13). The NPA, an advocacy and support group comprising former research participants in the high-profile NAOMI clinical trial of heroin-assisted treatment in Vancouver’s Downtown Eastside, invited Boyd (an academic) to join its members in designing research to foster ethical drug policy changes. Their findings are an indictment of current drug-substitution studies and research approaches that ignore the lasting impacts on communities. The work of NPA illustrates how communities who experience extreme marginalization can come together to support one another; connect to kindred local, national, and international organizations; push for change in how governments and academics conduct research; and generate new knowledge and evidence to advocate for progressive social policy. Indrani Margolin, Terry Krupa, Sean Kidd, Darrell Burnham, Dawn Hemingway, Michelle Patterson, and Denise Zabkiewicz (chapter 14) make the case that arts-based research methods are well suited to capture the little-understood aspects of mental health recovery that are based on gender, age, and racialization. They use arts-based mediums to engage three groups of women (older women, racialized women, and young women) living in three different locales in Canada to address the question, “What are the important moments, people, places, events, activities, and milestones in your recovery?” Key themes that emerge relate to personal identity, the importance of relationships and family, and the fulfilment of meaningful roles. The research reveals that differences in the recovery experience vary based on social identity and place. Margolin et al. argue that arts-based methods can be used in ways that are consistent with intersectional approaches to restore our understanding of the vital role of social experience in mental health recovery. Louise Godard and Viviane Josewski, with Jill Cory, Alexxa Abi-Jaoudé, Lorraine Halinka Malcoe, and Victoria Smye (chapter 15), critically

20  Lorraine Halinka Malcoe and Marina Morrow

re-analyse focus-group data of women with experiences of violence and mental health and/or substance use concerns. They use critical feminist discourse analysis guided by an intersectional lens and show how services and systems that are intended to support women end up negatively affecting their ongoing experiences of vulnerability and oppression. The authors’ findings illuminate the discursive and structural constructions of the problem of violence against women and the ways in which these constructions shape the harms and benefits experienced by women accessing services and supports in health, mental health, legal, and social service systems. The authors advocate for improved responses to women by revaluing women’s knowledge and adopting a violence- and trauma-informed approach that not only “situates women’s experiences of violence within multiple oppressions” but also ensures that women have adequate supports, social assistance, and safe, stable, and affordable housing. In the final chapter, Sarah Chown and Lorraine Halinka Malcoe draw on emic notions of resilience rooted in gay men’s activism, as well as on intersectionality and queer theory, to propose a new conceptual framework for resilience research in gay men’s health based on five principles. This research should, they argue, incorporate historical and structural analysis; foreground interlocking systems of domination at work in producing health inequities among diverse gay men; affirm resistance; centre knowledge production by gay men who experience and resist multiple forms of marginalization; and engage researchers in self-reflexive praxis. After elucidating each of these complementary principles, Chown and Malcoe apply them to an analysis of research articles on resilience among gay men to show how their framework can guide future resilience research towards explicit social justice aims. Critically Inquiring: Cross-Cutting Strategies for Social Justice in Mental Health Mental health is a key site for social justice action. Critical Inquiries for Social Justice in Mental Health illuminates various critical theory approaches to mental health research, all of which explicitly link knowledge and evidence production to social justice praxis. The book is organized into five sections based on common critical methodologies and topical areas of inquiry. Yet, across these sections, we wish to highlight here three common strategies that emerge for transforming mental health research so that it fosters elimination of inequitable power relations in society and in mental health systems, and it supports the full humanity and potential of all people experiencing mental distress/difference.

Introduction 21

First, central to the application of critical theories is the emphasis on challenging dominant epistemologies. Every chapter herein challenges dominant epistemologies as one means to achieve social justice in mental health. Contributors do this work by employing critical epistemologies (such as feminist, Indigenous, and critical realist) and making visible the ideologies, assumptions, aims, and commitments of powerful actors and institutions (including psychiatry, medicine, media, government, and business). They expose these underpinnings, in part, through illumination of normative thinking and other socio-structural processes rooted in dominant discourses and practices (for example, DSM diagnostic categories), and by employing epistemologies that privilege the vantage points and perspectives of people and communities who have experienced – and resisted – the greatest harms from inequitable power relations. Thus, contributors do not assume that academics are the exclusive – or even primary – holders of expert knowledge. Many contributors draw on experiential, activist, and Indigenous knowledges to explore experiences of – and responses to – mental distress and mental difference, not as problems of individuals but as produced by complex relations of power, ideologies, and socio-­structural processes that maintain interlocking systems of domination. For example, authors unpack how dominant epistemologies present categories of mental illness, indigeneity, sex, gender, and sexuality as ahistorical, binary, and fixed concepts, and they instead reveal the fluidity and contested production of these concepts. As well, several contributors interrogate colonialism as a fundamental determinant of individual and community health and wellness. The value of applying critical theories to the study of mental health inequities is not limited, as Teghtsoonian (chapter 8) has clarified (regarding Foucauldian approaches), to “criticism as an analytic practice of unsettling the taken-for-grantedness of how things are” (italics in original). Rather, contributors employ intersectional ethics and approaches to give rise to an explicit social justice stance in their research. Thus, a second common research strategy is contributors’ emphasis on conceptualizing, designing, and interpreting their research in relation to people’s resistance against coercion, domination, and injustice. Contributors use research to document both individual acts of resistance and social movements (including psychiatric user- and survivor-led, gay men’s, feminist, and anti-­colonial movements), they connect their theories and methodologies to these forms of resistance, and they reshape research agendas to build power in marginalized communities and to affirm resistance. For example, contributors document the historical and contemporary role of social movements in contesting the abuses of psychiatry and forcing attention onto the histories, lives, and stories of individuals and communities who have experienced

22  Lorraine Halinka Malcoe and Marina Morrow

colonial violence, and onto the damaging effects of diagnostic categories and other psychiatric practices. In an effort to illustrate that oppressive systems are rarely monolithic, contributors delineate a multiplicity of ways in which individuals resist psychiatrization, criminalization, and normalization in their day-to-day actions and reactions to unjust social policies, research and institutional practices, and mental health systems. Building on resistance in its multiple forms, a final cross-cutting strategy employed by contributors is that of using critical research methodologies to reimagine, wholescale, mental health systems and supports. Contributors imagine anew systems and supports designed from the bottom up, based on local and Indigenous knowledges, and on structural and intersectional analyses rooted in the positions of people experiencing emotional suffering or mental difference (and especially those multiply marginalized by interlocking oppressive systems). Crucially, they imagine entirely new structures in which the people most affected by the systems, supports, and services that are designed to meet their needs have decision-making authority over their formations. Documented in this volume are anti-psychiatry, Mad, and anti-colonial movements in North America and the global South; trans-led mental health initiatives; gay men’s activism; and unions and other advocacy organizations led by people who use criminalized drugs. By tracing research to people’s movements, resistance, and activism, by highlighting new applications of critical theories (including intersectional, decolonial, feminist, transgender, and post-structural), by centring knowledge production in social justice ethics, and by extending critical research methodologies (including participatory action, Indigenous, and arts-based) to support the leadership and knowledge of people with lived experiences of psychiatrization and marginalization, Critical Inquiries for Social Justice in Mental Health creates new imaginings of decolonized mental health praxis, of an abundance of people- and community-centred supports, of mental health systems free of punishment and coercion, and of a world where human differences are affirmed. We hope this collection inspires further research, resistance, imaginings, and action for social justice in mental health.

NOTES 1 Please see the preface, pp. xi–xii, for a discussion of the usage of the terms mental health, mental illness, emotional suffering, emotional distress, mental distress, and mental difference.

Introduction 23 REFERENCES Appignanesi, L. (2007). Mad, bad and sad: A history of women and the mind doctors from 1800 to the present. London: Virago Press. Barker, M.J., Greenwood, K.M., Jackson, M., & Crowe, S.F. (2004). Cognitive effects of long-term benzodiazepine use: A meta-analysis. CNS Drugs, 18(1), 37–48. Medline:14731058 http://dx.doi.org/10.2165/00023210-200418010-00004 Bielefeldt, A.Ø., Danborg, P.B., & Gøtzsche, P.C. (2016). Precursors to suicidality and violence on antidepressants: Systematic review of trials in adult healthy volunteers. Journal of the Royal Society of Medicine, 109(10), 381–92. Bilge, S. (2013). Intersectionality undone: Saving intersectionality from feminist intersectionality studies. Du Bois Review, 10(2), 405–24. http://dx.doi.org/10 .1017/S1742058X13000283 Bloom, D.E., Cafiero, E.T., Jané-Llopis, E., Abrahams-Gessel, S., Bloom, L.R., Fathima, S., … Weinstein, C. (2011). The global economic burden of noncommunicable diseases. Geneva: World Economic Forum. Braedley, S., & Luxton, M. (Eds.). (2010). Neoliberalism and everyday life. Montreal: McGill-Queen’s University Press. British Psychological Society. (2013). Division of Clinical Psychology position statement on the classification of behaviour and experience in relation to functional psychiatric diagnoses: Time for a paradigm shift. Retrieved from http://dxrevisionwatch. files.wordpress.com/2013/05/position-statement-on-diagnosis-master-doc.pdf Brodie, J. (2007). Reforming social justice in neoliberal times. Studies in Social Justice, 1(2), 93–107. Brookfield, S.D. (2005). The power of critical theory: Liberating adult learning and teaching. San Francisco: John Wiley & Sons. Browne, A.J., Varcoe, C., Smye, V., Reimer-Kirkham, S., Lynam, M.J., & Wong, S. (2009, July). Cultural safety and the challenges of translating critically oriented knowledge in practice. Nursing Philosophy, 10(3), 167–79. Medline:19527438 http://dx.doi.org/10.1111/j.1466-769X.2009.00406.x Burman, E., & Chantler, K. (2003). Across and between: Reflections on researching “race,” gender and mental health. Feminism & Psychology, 13(3), 302–9. http://dx.doi.org/10.1177/0959353503013003004 Burstow, B. (2006). Understanding and ending ECT: A feminist imperative. Canadian Woman Studies, 25(1,2), 115–22. Burstow, B. (2015). Psychiatry and the business of madness. New York: Palgrave Macmillan. http://dx.doi.org/10.1057/9781137503855 Burstow, B., LeFrançois, B.A., & Diamond, S. (Eds.). (2014). Psychiatry disrupted: Theorizing resistance and crafting the (r)evolution. Montreal, Kingston: McGill-Queen’s University Press.

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Introduction 27 Metzl, J. (2009). The protest psychosis: How schizophrenia became a Black disease. Boston: Beacon Press. Millet, K. (1990). The loony bin trip. New York: Simon & Schuster. Mills, C. (2013). Decolonizing global mental health: The psychiatrization of the majority world. New York: Routledge. Mills, C. (2014). Psychotropic childhoods: Global mental health and pharmaceutical children. Children & Society, 28(3), 194–204. http://dx.doi.org/10.1111 /chso.12062 Moncrieff, J. (2009). The myth of the chemical cure: A critique of psychiatric drug treatment. London: Palgrave MacMillan. Morris, M., & Bunjun, B. (2007). Using intersectional feminist frameworks in research. Ottawa: Canadian Research Institute for the Advancement of Women. Morrow, M. (2013). Recovery: Progressive paradigm or neoliberal smokescreen? In B.A. LeFrançois, R. Menzies, & G. Reaume (Eds.), Mad matters: A critical reader in Canadian Mad studies (pp. 323–33). Toronto: Canadian Scholars Press. Morrow, M., Frischmuth, S., & Johnson, A. (2006). Community-based mental health services in BC: Changes to income, employment and housing security. Vancouver: Canadian Centre for Policy Alternatives. Retrieved from https:// www.policyalternatives.ca/publications/reports/community-based-mental -health-services-bc Morrow, M., Wasik, A., Cohen, M., & Perry, K.E. (2009). Removing barriers to work: Building economic security for people with psychiatric disabilities. Critical Social Policy, 29(4), 655–76. http://dx.doi.org/10.1177/026101 8309341904 Mussel, B., Cardiff, K., & White, J. (2004). The mental health and well-being of Aboriginal children and youth: Guidance for new approaches and services. A report prepared for the British Columbia Ministry of Children and Family Development. Chilliwack, BC: Sal’i’shan Institute. Retrieved from http:// childhealthpolicy.ca/the-mental-health-and-well-being-of-aboriginal-children -and-youth-guidance-for-new-approaches-and-services/ Nana-Ama Danquah, M. (1999). Willow weep for me: A Black women’s journey through depression. New York: Ballentine Publishing Group. Nielsen, M., Hansen, E.H., Gøtzsche, P.C. (2012). What is the difference between dependence and withdrawal reactions? A comparison of benzodiazepines and selective serotonin re-uptake inhibitors. Addiction, 107(5), 900–8. Olfson, M., King, M., & Schoenbaum, M. (2015, October). Antipsychotic treatment of adults in the United States. Journal of Clinical Psychiatry, 76(10), 1346–53. Medline:26528641 http://dx.doi.org/10.4088/JCP.15m09863 Olstead, R. (2002). Contesting the text: Canadian media depictions of the conflation of mental illness and criminality. Sociology of Health & Illness, 24(5), 621–43. http://dx.doi.org/10.1111/1467-9566.00311

28  Lorraine Halinka Malcoe and Marina Morrow Pearson, C., Janz, T., & Ali, J. (2013). Mental and substance use disorders in Canada. Ottawa: Statistics Canada. Perlin, M.L. (1992). On sanism. SMU Law Review, 46, 373–407. Perlin, M.L. (1999). “Half-wracked prejudice leaped forth”: Sanism, pretextuality, and why and how mental disability law developed as it did. Journal of Contemporary Legal Issues, 10, 3–36. Porter, R. (2002). Madness: A brief history. Oxford: Oxford University Press. Razack, S.H. (2013). Timely deaths: Medicalizing the deaths of Aboriginal people in police custody. Law, Culture and the Humanities, 9(2), 352–74. http://dx.doi .org/10.1177/1743872111407022 Rembis, M.A. (2011). Defining deviance: Sex, science, and delinquent girls, 1890–1960. Urbana: University of Illinois Press. Roberts, D., & Jesudason, S. (2013). Movement intersectionality: The case of race, gender, disability, and genetic technologies. Du Bois Review: Social Science Research on Race, 10(2), 313–28. http://dx.doi.org/10.1017 /S1742058X13000210 Rose, N. (1998). Inventing our selves: Psychology, power, and personhood. Cambridge: Cambridge University Press. Rossiter, K., & Morrow, M. (2011). Intersectional frameworks in mental health: Moving from theory to practice. In O. Hankivsky (Ed.), Health inequities in Canada: Intersectional frameworks and practices (pp. 312–30). Vancouver: UBC Press. Sackeim, H.A., Prudic, J., Fuller, R., Keilp, J., Lavori, P.W., & Olfson, M. (2007, January). The cognitive effects of electroconvulsive therapy in community settings. Neuropsychopharmacology, 32(1), 244–54. Medline:16936712 http:// dx.doi.org/10.1038/sj.npp.1301180 Shimrat, I. (Ed.). (1997). Call me crazy: Stories from the Mad movement. Vancouver: Press Gang. Shimrat, I. (2013). The tragic farce of “Community Mental Health Care.” In B.A. LeFrançois, R. Menzies, & G. Reaume (Eds.), Mad matters: A critical reader in Canadian Mad studies (pp. 144–57). Toronto: Canadian Scholars Press. Shorter, E. (1998). A history of psychiatry: From the era of the asylum to the age of Prozac. New York: Wiley Press. Shorter, E. (2008). Before Prozac: The troubled history of mood disorders in ­psychiatry. New York: Oxford Press. Smith, L.T. (2012). Decolonizing methodologies: Research and Indigenous peoples (2nd ed.). London and New York: Zed Books. Spade, D. (2011). Normal life: Administrative violence, critical trans politics, and the limits of the law. Brooklyn, NY: South End Press. Sunderland, A., & Findlay, L. (2013). Perceived need for mental health care in Canada: Results from the 2012 Canadian Community Health Survey–Mental

Introduction 29 Health. Ottawa: Statistics Canada. Retrieved from http://www.statcan.gc.ca /pub/82-003-x/2013009/article/11863-eng.htm Tait, C.L. (2008). Ethical programming: Towards a community-centred approach to mental health and addiction programming in Aboriginal communities. Pimatziwin, 6(1), 29–60. Retrieved from http://www.pimatisiwin.com /uploads/445206868.pdf Tam, L. (2013). Whither indigenizing the Mad movement? Theorizing the social relations of race and madness through conviviality. In B.A. LeFrançois, R. Menzies, & G. Reaume (Eds.), Mad matters: A critical reader in Canadian Mad studies (pp. 281–97). Toronto: Canadian Scholars Press. Thachuk, A. (2011). Stigma and the politics of biomedical models of mental illness. International Journal of Feminist Approaches to Bioethics, 4(1), 140–63. http://dx.doi.org/10.2979/intjfemappbio.4.1.140 Thornicroft, G. (2007, September 8). Most people with mental illness are not treated. Lancet, 370(9590), 807–8. Medline:17826153 http://dx.doi.org /10.1016/S0140-6736(07)61392-0 Tosh, J. (2011). Zuck Off! A commentary on the protest against Ken Zucker and his treatment of childhood gender identity disorder. Psychology of Women Section Review, 13(1), 10–14. Ussher, J. (1991). Women’s madness. Hemel Hempstead, UK: Harvester Wheatsheaf. van Daalen-Smith, C.L. (2011). Waiting for oblivion: Women’s experiences with electroshock. Issues in Mental Health Nursing, 32(7), 457–72. Medline:21736469 http://dx.doi.org/10.3109/01612840.2011.583810 van Daalen-Smith, C., Adam, S., Breggin, P., & LeFrançois, B. (2014). The utmost discretion: How presumed prudence leaves children susceptible to electroshock. Children & Society, 28(3), 205–17. http://dx.doi.org/10.1111/chso.12073 Viruell-Fuentes, E.A., Miranda, P.Y., & Abdulrahim, S. (2012, December). More than culture: Structural racism, intersectionality theory, and immigrant health. Social Science & Medicine, 75(12), 2099–106. Medline:22386617 http://dx.doi .org/10.1016/j.socscimed.2011.12.037 Ward, G. (1997). Mental health and the national press. London: Health Education Authority. Warme, G. (2013). Removing our civil rights: How dare we? In B.A. LeFrançois, R. Menzies, & G. Reaume (Eds.), Mad matters: A critical reader in Canadian Mad studies (pp. 210–20). Toronto: Canadian Scholars Press. Watters, E. (2010). Crazy like us: The globalization of the American psyche. New York: Free Press. Weitz, D. (2013). Electroshock: Torture as “treatment.” In B.A. LeFrançois, R. Menzies, & G. Reaume (Eds.), Mad matters: A critical reader in Canadian Mad studies (pp. 158–69). Toronto: Canadian Scholars Press.

30  Lorraine Halinka Malcoe and Marina Morrow Whitaker, R. (2004). The case against antipsychotic drugs: A 50-year record of doing more harm than good. Medical Hypotheses, 62(1), 5–13. Whitaker, R. (2010). Anatomy of an epidemic: Magic bullets, psychiatric drugs, and the astonishing rise of mental illness in America. New York: Random House. Williams, L., & Mumtaz, Z. (2008). Being alive well? Power-knowledge as a countervailing force to the realization of mental well-being for Canada’s Aboriginal young people. International Journal of Mental Health Promotion, 10(4), 21–31. http://dx.doi.org/10.1080/14623730.2008.9721773 World Health Organization (WHO) (2001). World health report 2001 – Mental health: New understanding, new hope. Geneva: Author. Retrieved from http:// www.who.int/whr/2001/en World Health Organization (WHO) (2013). Mental health action plan 2013–2020. Geneva: Author. Retrieved from http://apps.who.int/iris/bitstream/10665/89966 /1/9789241506021_eng.pdf ?ua=1 Young, I.M. (2011a). Justice and the politics of difference (2nd ed.). Princeton, NJ: Princeton University Press. Young, I.M. (2011b). Responsibility for justice. New York: Oxford University Press. http://dx.doi.org/10.1093/acprof:oso/9780195392388.001.0001

PART ONE Foregrounding Social Justice Theorizing

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1 “Women and Madness” Revisited: The Promise of Intersectional and Mad Studies Frameworks marina morrow

Introduction When Persimmon Blackbridge and Sheila Gilhooly launched their Still Sane exhibit in Vancouver in 1984, the second wave of the feminist movement was well underway. The exhibit comprised moulded casts of Sheila Gilhooly’s body, crafted by Persimmon, on which were inscribed Sheila’s powerful story of being committed to a psychiatric hospital for being a lesbian (Blackbridge & Gilhooly, 1985). Still Sane marks a powerful moment in feminist history when women who had survived abuse at the hands of psychiatry began to speak and write about their experiences. Indeed, amidst the rapidly changing social landscapes in Canada, the United Kingdom, Australia, and the United States feminists were developing an analysis of patriarchy that included critiques of heterosexism, imperialism, racism, and psychiatry (for example, Cade, 1970; Chesler, 1972; Combahee River Collective, 1977; Davis, 1981; Greer, 1970; Millet, 1970; Morgan, 1970; Smith & David, 1975). Concomitant with the feminist movement were two new forms of social mobilization: a burgeoning mental patients’ liberation movement,1 led by people who had been harmed by psychiatry (Beckman & Davies, 2013; Chamberlin, 1990), and an anti-psychiatry movement, led by activists who highlighted the abuses of psychiatry from within the psychological professions2 (Breggin, 1979, 1983, 1991; Laing, 1960; Morrison, 2005; Szasz, 1961). In what follows I revisit early feminist critiques of psychiatry and their relationship to both the mental patients’ liberation movement and the antipsychiatry movement. This history sets the stage for an interrogation of the current discursive regime in mental health, with a focus on biomedicalism and neoliberalism and the ways they support intersecting structural

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forms of oppression – sexism, racism, colonialism, and, notably, sanism. I draw examples from the province of British Columbia to illustrate how these discourses have shaped mental health and social policy decisions that have negatively affected diverse groups of women.3 I end by advocating for a merger of intersectional and Mad studies frameworks as the most productive way forward for activists and academics who are pushing for social change and social justice in mental health. Revisiting History Feminists during the second wave criticized psychology and psychiatry for naturalizing and essentializing women as members of a weaker, more mentally fragile sex (Caplan, 1987). In the ensuing decades these critiques intensified, and feminists sought to illustrate how patriarchal understandings of sex and gender were manifest in the professional practice of psychiatry (for example, Burstow, 1992; Caplan & Cosgrove, 2004; Penfold & Walker, 1983; Smith & David, 1975; Appignanesi, 2007; Ussher, 1991). Alongside these critiques were writings by women of their personal accounts of mental distress4 and experiences with psychiatry (for example, Blackbridge & Gilhooly, 1985; Capponi, 1992, 1997, 2003; Millet, 1990; Nana-Ama Danquah, 1999; Shimrit, 1997). Collectively these works illustrated how psychiatry had bolstered patriarchal power to censure lesbians, blame women for their experiences of physical and sexual abuse at the hands of men, and reinforce racism and narrow social and cultural understandings of femininity. Notably, feminist science studies introduced epistemological frameworks that valued women’s lived experiences and challenged androcentric science practices and the objective-subjective binary (for example, Haraway, 1988; Harding, 1987, 1991; Martin, 1991). These developments gave epistemic privilege (hooks, 1984) to the first-hand narratives emerging from the front lines of psychiatric institutions. Of course, feminists were not alone in their critiques of psychiatry. Chamberlin (1990) makes a distinction between the mental patients’ liberation movement and the anti-psychiatry movement. Mental patients’ liberation was a grassroots movement of people who had experienced the harms of psychiatry and institutionalization. Its participants used many of the same tools and frameworks that had emerged from other liberation movements in the 1960s and 1970s in North America, such as consciousness-raising to address internalized oppression and what Chamberlin (1990) calls “mentalism” (now more commonly referred to as sanism). As Chamberlin (1990) notes, “the struggle against internalized oppression and

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mentalism generally was seen as best accomplished in groups composed exclusively of patients, through the process of consciousness-raising (borrowed from the women’s movement)” (p. 324). The anti-psychiatry movement was “largely an intellectual exercise of academics and dissident mental health professionals” (Chamberlin, 1990, p. 323). Psychologists and psychiatrists, disenchanted with the direction of their professions, highlighted the abuses of psychiatry and attempted to persuade their colleagues to change their practices (Breggin, 1979, 1983, 1991; Laing, 1960; Morrison, 2005; Szasz, 1961). In this way the anti-­psychiatry movement and feminist academic critiques of psychiatry were similar. Both emerged primarily (though not exclusively) from the perspectives of professionals (either academics or clinicians), and neither necessarily made space for the voices and experiences of people who had actually lived institutionalization and the harms of psychiatry. However, feminist critiques were distinct in their criticism of the way in which psychiatry was shaped by sexism. The intensification of psychiatric de-institutionalization in the 1970s fuelled the growth of the mental patients’ liberation movement, as people emerged from mental hospitals with vivid survival stories of abusive practices (Blackbridge & Gilhooly, 1985; Capponi, 1992, 1997, 2003; Millet,­1990; Shimrit, 1997). They channelled their activism towards the development of organizations and programs run by former patients (for example, the Mental Patients Association and the West Coast Mental Health Network in Vancouver, and Judi Chamberlin’s (1978) work in the United States); the development of magazines (for example, Phoenix Rising in ­Toronto, In a Nutshell in Vancouver, and Asylum: An International Magazine for Democratic Psychiatry and the Icarus Project in New York); and, more recently, the launch of websites, blogs, conferences, and formal networks dedicated to critically evaluating psychiatry and broader mental health care systems (for example, MindFreedom and Mad in America in the United States, the Critical Psychiatry Network in Britain, the International World Network of Users and Survivors of Psychiatry, and the Mad Society of Canada)5 and to preserving the history of de-­institutionalization and psychiatric survivors (History of Madness, http://www.historyof madness.ca/, and the Toronto Psychiatric Survivors’ Archives, http://www .psychiatricsurvivorarchives.com). Thus, by the 1980s large cities in Canada, the United States, and the United Kingdom had become hubs of activism against psychiatry and had begun to advance the history and perspectives of people who had been the subjects of psychiatry (Capponi, 1992, 2003; Crossley, 2006; Shimrit, 1997).

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The feminist movement, the anti-psychiatry movement, and the mental patients’ liberation movement have all played pivotal roles in critiquing the psychiatric paradigm and the medical model of mental illness, exposing the abuses of psychiatry and challenging its claims to objective knowledge. Although feminist academic critiques overlapped with and sometimes ran parallel to mental patients’ liberation, the two movements have not always had an easy relationship. Indeed, as Chamberlin (cited in Harris, 2003) has rightly observed, “when you talk to women who identify as feminists, and you mention that you’re involved with mental health issues, they always mention Phyllis Chesler’s book Women and Madness. But Phyllis Chesler’s a psychologist and it’s a book in which somebody else talks for us. And this comes from a movement that says that women should speak for themselves, but somehow they think it’s OK that a psychologist should talk for women who are ‘mentally ill’ and getting locked up.  She gets it so wrong in that book, and it really hurts me when that’s considered a feminist classic” (p. 1). Thus, psychiatric survivors have often distanced themselves from the feminist movement, viewing it as elitist and academic (Burstow, 2005), and critiques of psychiatry have not always been a priority of feminist agendas. Instead feminist clinicians and academics turned towards the development of women-specific mental health services and resources (Morrow, 2007, 2008). Although women-centred services have helped to keep the structural causes (for example, sexism, violence, racism, poverty) of women’s mental distress in the public spotlight and have disrupted strictly biomedical understandings of mental health, what has been lost is a more radical critique of psychiatry; that is, the feminist political urgency around the rights of women diagnosed with mental illness has dissipated. This urgency has been retained by Mad activists and by the emergence of Mad studies in the academy, which has been spearheaded largely by people with lived experience of psychiatrization. Despite the work of feminists and Mad activists, since the 1990s the structural causes of mental distress have further receded from public awareness. Within the psychological professions some have argued that there is now a firmly entrenched biomedical paradigm, if not always in practice, at least within contemporary psychiatric discourse (Luhrmann, 2000; Martin, 2007; Rose, 2007). In this context, maintaining structural (as opposed to individually focused) analyses of issues like violence, poverty, colonialism, racism, and gendered discrimination in their intersections with mental distress has proven difficult. Furthermore, feminist and anti-racist scholars and activists who write against biopsychiatry while also trying to make meaningful social change (Chan, Chunn, & Menzies, 2005; Metzl,

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2009; Ussher, 1991, 2011) struggle with the limited conceptual frameworks available to describe mental states and experiences of mental distress. Ussher (2005), in her articulation of a “material-discursive-intrapsychic” (MDI) approach, has perhaps come closest to providing a theoretical frame­ work that captures the tension between wanting to acknowledge women’s individual experiences of psychic pain and not wanting to reinforce strictly biomedical understandings of the origins of this pain. Ussher’s MDI model (described in more detail in chapter 7) uses a critical realist epistemology that recognizes the materiality of the body while understanding that this materiality is mediated through language, culture, and social and political contexts. MDI thus recognizes the interconnections between the body, the psyche, and material reality. In order to develop better conceptual frameworks for acknowledging individual distress without compromising our understanding of the social and political origins of this distress, we first must unpack the powerful discursive and political functions of biomedicalism and neoliberalism, the task to which I now turn. The Knowledge-Power Nexus: Biomedicalism and Psychiatry On the eve of the 2013 publication of the most recent version of the American Psychological Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5), the British Psychological Society’s division of clinical psychology (DCP) released a powerful statement calling for a major overhaul in the way mental illness is understood: “The DCP is of the view that it is timely and appropriate to affirm publicly that the current classification system as outlined in DSM and ICD [international classification of disease], in respect of the functional psychiatric diagnoses, has significant conceptual and empirical limitations. Consequently, there is a need for a paradigm shift in relation to the experiences that these diagnoses refer to, towards a conceptual system not based on a ‘disease’ model” (British Psychological Society, 2013, p. 1). The statement goes on to discuss how diagnostic classification minimizes both the role of psychosocial factors in mental health, and the links between people’s experiences of distress and their social, cultural, familial, personal, and historical contexts, leading to over-emphasis on biological interventions, such as medication. Perhaps most importantly, the DCP claims that the diagnostic system is “embedded in a Western worldview. As such, there is evidence that it is discriminatory to a diverse range of groups and neglectful of areas such as ethnicity, sexuality, gender, class, spirituality

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and culture” (for example, Bayer, 1987; Busfield, 1996; Fernando, 2010; Shaw & Proctor, 2005, as cited in British Psychological Society’s DCP position statement, 2013). This declaration contextualizes my argument within the current political climate, where debates internationally about the relative role of the biological and the social in mental health have been fuelled by revisions to the DSM. It is important to foreground psychiatry, the pharmaceutical industry, and psychiatric practices as key points on the knowledge-power nexus and to highlight the DSM as psychiatry’s primary modus of operation. Psychiatry and psychiatric practices have been the target of scholarship and activism grappling with the divide between the dominant science of mental illness and people’s subjective experiences of distress and mental health care treatment. Indeed, an understanding of psychiatry and its reach is necessary for grasping the relationships between “scientific knowledge, biomedical institutions, social action and subjective experience” (Pickersgill, 2012, p. 328). To this end, Pickersgill (2012) reminds us that psychiatry is a complex entity. For example, his review of critical sociological discourse on psychiatry illustrates how the dominant functions of psychiatry (standardization of subjectivity, medicalization, and the recourse to neurobiology) are shaped in their interactions with clinical practice and shifting attitudes about mental illness. Further, Pickersgill illustrates the successful mobilization of medicalization and biomedical discourses by activist patients seeking a cause for their mental distress (for example, U.S. war veterans and the diagnosis of post-traumatic stress disorder), and those arguing for a broader, more inclusive understanding of the brain (for example, the neurodiversity movement spawned by people diagnosed with autism and their allies). Key to my argument is Pickersgill’s claim that psychiatry is multidimensional and that “‘science’ and ‘society’ mutually constitute and legitimate one another” (p. 330). Thus, for Pickersgill (2012), the idiom of co-production is a better way to understand this dynamism. Such complexity and co-production are evident in an examination of the tensions in the discursive field in which psychiatry and its practices are actively engaged. Although these tensions have long historical trajectories, it is with the advent of psychiatric de-institutionalization that governments and those in the psychological sciences (psychology, psychiatry, and criminology) have been pushed to figure out how best to support people experiencing mental distress in communities. As the psychological sciences have moved away from psychoanalytic explanations of mental illness in favour of biomedical understandings and pharmaceutical interventions, tensions have emerged from within these fields regarding what constitutes mental illness and how best to understand its etiology. These tensions are played

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out in scholarship but more saliently in the day-to-day practices in mental health, as well as in the activism that resists psychiatric practices and proffers alternatives. Tensions over etiology are currently framed within debates about whether mental illness should be understood primarily through the biomedical lens of illness or through models that understand the contributions of both the biological and the social in mental health. The former comes primarily from the psychological professions, the latter from public health and mental health promotion (Goldner, Jenkins, Prairie, & Bilsker, 2011).6 However, in the context of dominant professional debates even the dichotomy of biological versus social is somewhat simplistic. While most biological scientists would agree that the causes of mental distress are complex and interact with social factors (that is, they would support more multidimensional models), Thachuk (2011), drawing on the work of Rose (2007), argues that, “while in theory no one might explicitly endorse such a reductive approach, in practice the biomedical model of mental disorder informs a broad range of institutional practices. The disproportionate amount of attention that biogenetic variables receive within psychiatric research and practice, coupled with the extent to which these theories are promoted by special interest groups and how this moulds (and distorts) public perception, is at least enough to suggest that biological psychiatry represents what Nikolas Rose refers to as a ‘style of thought’”7 (p. 147). Indeed, the brain itself is embodied and exists in a social context, a fact that Rose (2014) suggests must be emphasized by social scientists; that is, “if you take something like the understanding of the human brain, it’s impossible to understand it unless you recognize that the brain is embodied, and unless you recognize that the embodied brain is intrinsically, not just extrinsically, enmeshed in its social and cultural and experiential world – and that’s not just an add on” (p. 3). Mindful of insights by Pickersgill and others into how biomedical dominance may not translate into purely biomedically driven practices at the clinical level (Lester, 2007; Light, 1980; Pickersgill, 2012), I nonetheless argue that the dominant public health and policy discourse in mental health today is biomedical and has become reductive, in part, because of the exigencies of mental health care systems in neoliberal policy contexts. Further, biological understandings of mental illness emerge from different disciplinary traditions than do social explanations, and the siloing of these forms of knowledge means that a deep understanding of the relationship between the biological and the social in mental health does not yet exist. In instances when the two lines of explanation are brought together, the biomedical dominates.

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Yet, experiences of the mind can never be understood outside of social, cultural, and historical contexts, which influence both the way a person’s experiences and behaviours are understood and the kinds of interventions, treatments, or supports that are offered or, too often, forced upon the individual. As these contexts are imbued with inequities that further complicate social responses, it is useful to examine the literature that does take up the social aspects of mental health. A recent review of this literature suggests that evidence about the role of inequities in mental health falls into several overlapping categories (Ingram, Wasik, Cormier, & Morrow, 2013). These categories include literature that utilizes a social determinants framework (for example, Alegría, Pérez, & Williams, 2003; Candy, Cattell, Clark, & Stansfeld, 2007; Li, Mattes, Stanley, McMurray, & Hertzman, 2009); literature that focuses on specific social locations or processes (for example, gender and ethnicity) to establish relationships between mental health and social context (for example, Harris, 1997; U’Ren, 2011); literature that addresses equity in the context of access to services (for example, Marmot, Friel, Bell, Houweling, & Taylor, 2008); literature that focuses on using a critical sociological lens to understand inequities and mental health; and finally, Mad studies, post-colonial, and intersectional literatures (and, I would add, decolonizing frameworks) that challenge psychiatry as a problematic Western construct, thus troubling the whole concept of mental illness (for example, Adelson, 2008; Caplan, 1995; Caplan & Cosgrove, 2004; LeFrançois, Menzies, & Reaume, 2013; Metzl, 2009; Tait, 2008; Tang & Browne, 2008). All of these approaches acknowledge the role that the social environment plays in mental health; however, only some (for example, critical sociological, Mad studies, intersectional, feminist, post-colonial, and decolonizing frameworks) give explicit attention to power and social justice as these play out in psychiatric practices (Ingram et al., 2013). The latter also pay explicit attention to the structural underpinnings of social inequities (for example, discriminatory laws, ideologies that prop up racism and sexism), and, in the context of feminist scholarship, place particular emphasis on gender and race and, in some instances, on categories of difference and processes of differentiation (Rossiter & Morrow, 2011). What sets Mad studies apart is its attention to the role of sanism, which is used to understand the discrimination against people diagnosed with mental illness but goes further in its aim to unsettle assumptions about rationality, normality, and madness (Ingram, 2011; LeFrançois, Menzies, & Reaume, 2013; O’Hagan, 2014; Perlin, 2000). Specific to post-colonial and decolonizing approaches is the goal of investigating colonialism and its ongoing damaging effects on mental

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health, and exposing the ways in which psychiatry has historically been used as a tool of colonization (Mills, 2014; Summerfield, 2012; see Mills and also Ibrahim in this volume). Decolonizing approaches therefore value the contributions of Indigenous knowledge and Indigenous practices (see Peterson and Chatterjee and also Clark et al. in this volume). Scholars using critical sociological, Mad studies, feminist, post-colonial, and decolonizing frameworks offer critiques of dominant paradigms in mental health and develop and enhance frameworks for understanding social inequities and their role in mental health. Many studies also empirically apply frameworks to generate new evidence about how inequities function (Burman & Chantler, 2003; Morrow et al., 2010). Another key feature of this literature is that social and structural processes that undergird people’s experiences of mental distress are seen as inseparable from the contributions of the biological and the genetic in shaping these experiences. That is, the social environment not only contributes to mental illness but also surrounds all of its treatment and policy responses; indeed, the environment shapes knowledge production itself. Given the diversity of the frameworks outlined above, what is striking is that only a very limited range of this scholarship has been actively understood as evidence by policymakers, governments, and the psychological professions, namely that arising from biomedicine, neurobiology, and pharmacology (Thachuk, 2011). Thornicroft and Rose (2005) have referred to this as the “epistemological crisis on the status of evidence” (p. 2) in order to illustrate the historical privilege placed by psychiatry and medicine on evidence validated by randomized controlled trials and other forms of quantitative evidence, over that generated from more sociologically oriented studies through qualitative research that supports and includes people with lived experience of mental distress. The point here is not to pit qualitative and quantitative approaches against each other but to recognize that certain forms of evidence have held more sway for no good scholarly reason. Thus, the serious tensions that exist with respect to understanding the etiology of mental illness have an impact on what are seen as the most effective frameworks and policies for supporting and caring for people experiencing mental distress. In addition, debates over what constitutes evidence stymie the translation of diverse forms of knowledge from research into policy (for example, Hankivsky, Blackwood, et al., 2007; Kingdon, 2010; Waddell et al., 2005). Although dominant biomedical understandings of mental illness have meant that state resources and policies have been concentrated on medical forms of care (for example, psycho-pharmaceutical interventions and

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hospital beds) rather than on community resources (for example, housing and income supports), there is also evidence to suggest that some mental health practitioners and policy decision makers recognize the importance of qualitative forms of evidence and do find ways to attenuate strictly biomedical understandings of mental health to attend to equity issues and social context (Gamble & Stone, 2006; Jackson & Haworth-Brockman, 2007; National Collaborating Centre for Methods and Tools, 2012; Pederson, Hankivsky, Morrow, & Greaves, 2003; Status of Women Canada, 2014; Whitehead et al., 2004). Scholars and practitioners have also worked to provide for the basic social needs of people experiencing mental distress. One example is the housing first model (Tsemberis, Kent, & Respress, 2012). Housing first recognizes housing as foundational to mental wellness and puts forward the idea that people must have housing before any kind of treatment and support can be successful (Tsemberis, Kent, & Respress, 2012). However, within housing first models, biomedical treatment still plays a central role; that is, inequities are not foregrounded over an illness model. Programs that completely de-emphasize biomedicine are rare but do exist. One such example is the Finnish program out of Keropudas Hospital called “Open Dialogue,” which treats people experiencing their first episode of psychosis through a process of dialogue, most often without (or with very minimal) use of anti-psychotic medications (Seikkula et al., 2006). Research has shown that 80 per cent of people going through this program do not show any active psychosis after five years, and 85 per cent are able to return to active employment (Seikkula et al., 2006). Yet this model and others like it have not been widely adopted in mental health systems, illustrating the bias against any evidence that does not serve to prop up biomedicalism and the pharmaceutical industry. In summary, the way we come to understand mental illness is co-­ constructed through a range of scholarship, discourses, and practices, though it is clear that some of these have more salience in the current knowledge production, practice, and policy context than do others. Biomedicalism, Neoliberalism, and Contemporary Policy and Practice Biomedicalism is reinforced through the shift towards neoliberalism, which has dominated governmental practice and policy development in Canada, the United States, and the United Kingdom over the last thirty years. I argue that biomedicalism and neoliberalism mutually reinforce individualistic

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understandings of social problems, and blunt the scholarship and activism that point to complex interactions between the biological and the social (Morrow, 2013; Morrow, Wasik, Cohen, & Perry, 2009). Broadly understood, neoliberalism “is a set of practices centred on an increased role for the free market, flexibility in labour markets and a reconfiguration of welfare state activities” (Willis, Smith, & Stening, 2008, p. 1). As a set of economic policies that centre the “free market,” deregulation, and privatization, neoliberalism allows economics and the free market to dominate all spheres of government (Armstrong, 2010; Connell, 2010). As Connell (2010) writes, “the debate is about how to get the market working better, not about what should replace the market” (p. 22). Thus, neoliberalism has effectively shut down debates about socialism because governments from all parties now adhere to neoliberal values. For Braedley and Luxton (2010), this narrowing of debate has one crucial outcome: “neoliberalism is no longer an alternative to hegemonic political thought as it was in the mid-twentieth century. It is hegemonic political thought” (p. 10). Neoliberalism has particular implications for social justice, both with respect to how neoliberal policies have deepened inequities and how social movements have organized to resist it (Smith, Stenning, & Willis, 2008). Neoliberalism can also be understood as a form of governmentality (Foucault, 2008) and as constitutive of discursive practices that influence the understanding of our social world. Thus, neoliberalism has been said to be responsible for creating new identities, with a shift from collective forms of identity to more individualized ideas about what constitutes subject formation (Rose, 1996). Indeed, one cornerstone of neoliberalism is its promotion of the autonomy of individuals from the state (Braedley & Luxton, 2010; Teghtsoonian, 2008; Yalnizyan, 2005). When translated into policy, neoliberalism promotes individualistic understandings of complex social problems (“responsibilization”),8 the increased use of market mechanisms in health- and mental-health-care delivery (“managerialism”), and welfare state retrenchment in favour of self-reliance and volunteerism. Consequently, neoliberalism dovetails with biomedicalism because both are focused at the individual level, rather than the social and structural levels. In a neoliberal climate individuals are increasingly asked to assume the roles and risks of the state, while governments avoid addressing systemic problems, resulting in, for example, increased unemployment and poverty (Braedley & Luxton, 2010; Morrow, Wasik, Cohen, & Perry, 2009). In the Canadian social policy context neoliberalism has been actualized through massive cuts to social programs and through substantial pol­ icy changes in the health and social service sectors (Finkel, 2009). These

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changes have had deleterious effects on mental health care systems and, especially, on housing, income supports, and employment programs (Morrow, Frischmuth, & Johnson, 2006; Morrow, Wasik, Cohen & Perry, 2009). Policy changes and cuts to social programs are particularly concerning in the wake of the closure of large psychiatric institutions, where funds have not typically been reallocated to community-based supports (Morrow et al., 2010). The result is mental health care systems that are plagued by the lack of resources, making access to publicly funded care virtually contingent on DSM diagnostic criteria, and seriously delimiting the provision of preventative care and supports. By prioritizing psychiatric and acute mental health care, the mental health system, under neoliberal regimes, has assured that biomedical understandings of mental distress have prevailed over paradigms that emphasize the role of equity and social supports in mental health (Morrow et al., 2009). Although the forms taken by neoliberalism differ in different contexts, several examples from the Canadian provinces illustrate my point. Through the 1990s and into the present day some provincial governments (notably British Columbia, Ontario, and Alberta) introduced work-for-welfare programs (Ontario), tightened access to disability and employment insurance programs (British Columbia), failed to raise social assistance rates to meet climbing costs of living (British Columbia), and stressed self-reliance and volunteerism (Alberta). These changes have had implications for people with mental health problems with respect to income security and employment opportunities (Morrow, Wasik, Cohen, & Perry, 2009). In British Columbia changes have been documented following the shift in government in 2001 from a social democratic party, concerned with implementing a proactive and equity-informed approach to mental health, to the Liberal Party (for example, Morrow, Frischmuth, & Johnson, 2006; Morrow et al., 2009). Under the Liberal government, mental health services were decentralized to the provincial health regions, and the province abandoned its leadership role in mental health reforms that had begun to take root in the form of policies related to a recovery-oriented system and the appointment of an advocate who could help document systemwide problems (Morrow et al., 2009). The Liberal government quickly disposed of the position of the provincial advocate, reduced the staff in the mental health division of the ministry by 70 per cent, and instituted some of the deepest cuts to social programs in Canadian history (Morrow, Frischmuth, & Johnson, 2006). The cuts to income-assistance programs were accompanied by a tightening of eligibility for income assistance and the repeal of the Disability Benefits Program Act (which was replaced

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by the Employment and Assistance for Persons with Disabilities Act) (Morrow, Frischmuth, & Johnson, 2006). These two policy changes were particularly devastating for people with mental health problems because they triggered a massive re-assessment of people on disability assistance. In the wake of several highly publicized suicides by people who were in the midst of this re-assessment, the BC government was forced to halt the process for applicants with diagnoses of mental illness and allow them to continue receiving disability benefits (British Columbia Auditor General, 2004; Morrow, Frischmuth, & Johnson, 2006). Nevertheless, the government continued on its course, and the new criteria were systematically integrated into the system, resulting in unduly arduous practices and procedures for people trying to access disability assistance, which continue until today. In terms of employment programming, funding was provided for new, performance-based models that favoured large, cross-­disability, business-oriented organizations over small community-based initiatives tailored to the needs of people experiencing mental distress. Although the results of this policy change have not been systematically tracked, evidence suggests that people who are experiencing mental distress and trying to access employment supports are being squeezed out in favour of less stigmatized applicants (Morrow et al., 2009). In the ensuing years, although some funds have been reinvested into supports (for example, housing), the community-based mental health programs, especially those that focus on peer support or specialized supports for certain populations (for example, new immigrants, women) have continued to be cut in favour of funding more medicalized forms of support (for example, assertive community treatment, ACT). Cutbacks are particularly evident in British Columbia in the wake of the 2012 closure of Riverview Hospital (the province’s only large psychiatric hospital). Closing Riverview did not result in any new funds going to community-based mental health supports for people transitioning out of a hospital setting. In light of fewer and fewer community-based supports, biomedical approaches are becoming the default form of treatment for most people. This default use of biomedical treatment has resulted in deepening concerns about the rights of people diagnosed with mental illnesses and the role of the state in enforcing treatment (Boyd & Kerr, 2016; Chammartin, Ogaranko, & Froese, 2011; Fabris, 2011; Van Veen, Teghtsoonian, & Morrow, forthcoming). Policy changes have occurred alongside an intensified governmental discourse in British Columbia that promotes individualism and independence through, for example, an illness self-management discourse (Teghtsoonian, 2008; also Teghtsoonian in this volume) and the discourse of recovery

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(Morrow, 2013). The increased dominance of these discourses undermines the possibility of understanding the social context in which people live and the structural barriers they face. The foregoing examples, though not exhaustive, illustrate how neoliberal ideology has influenced economic and social policy to substantially shape the design of services and supports for people experiencing mental distress. Governmental practices that are informed by neoliberalism and embrace biomedicalism prop up, rather than ameliorate, structural and systemic forms of oppression like sexism, sanism, colonialism, racism, ableism, and poverty and hinder people’s ability to participate as full and active citizens in community life. Thus, the twin ideologies of biomedicalism and neoliberalism militate against the integration of frameworks in mental health that would help to understand and address inequities better. In this climate, biopsychiatry dominates, and structural understandings of human suffering are abandoned in the call for “better” diagnoses, pharmaceutical solutions, and neurobiological research, rather than the radical systemic change envisioned by feminists, mental patients’ liberation movement, and anti-psychiatry activists of the 1970s and 1980s. From this perspective, the continuing and changing role of intersectional and Mad studies interventions is both essential and fraught with challenges. Theoretical, Policy, and Practical Potential of Intersectionality and Mad Studies In order to respond to the diverse understandings of mental health and mental illness that have come about through activism, governmental policy and practice, and academic discourses, one must first acknowledge the range of discursive practices at play and the tensions inherent in them. By naming the diverse knowledge base, including (and centring) lived experience, we can make visible the way in which, despite the dominance of biomedicine and psychiatry, other explanatory frameworks are being used to understand the complexity of mental distress. Visibility is the first step towards shifting the power balance and the discursive landscape. Intersectional and Mad studies frameworks have the potential to foreground the structural contexts in which mental distress occurs and to stretch our understanding of what is considered acceptable human experience. Intersectionality comes to us from the work of women of colour and Indigenous feminist activists and scholars (for example, Combahee River Collective, 1977; Crenshaw, 1991; Davis, 1981). Intersectionality as an analytic approach or a methodology brings to the forefront an

“Women and Madness” Revisited  47

understanding of power as it is mediated through a range of social relations based on, for example, gender, race, culture, ethnicity, sexuality, ability, and class. Intersectional scholars are interested not just in intersections, per se, but also in what these intersections have to say about power (Dhamoon, 2011). Central to intersectionality is the foregrounding of lived experience, that is, people’s own descriptions of living various intersections. People’s understandings and experiences of their lives, especially when affected by poverty, racism, colonialism, and other systems of power, are seen to offer key epistemological contributions to the understanding of social inequities (Rossiter & Morrow, 2011). Thus, intersectionality has the potential to more cogently mine social inequities as they pertain to mental health. Intersectionality can also factor in the specific forms of discrimination experienced by people diagnosed with mental illnesses; that is, it can lead to a fuller understanding of sanism in its intersections with other systems of oppression (Gorman, 2013; Legghio, 2013). A burgeoning scholarship on intersectional approaches to mental health research and policy is emerging (for example, Burman & Chantler, 2003; Clark et al., 2013; Rossiter & Morrow, 2011), illustrating its powerful potential as an analytic framework that can produce a better understanding of how relations of power are structured and how these relations have an impact on people’s experiences of the mental health care system. For example, in the work of Clark et al. (2013) (and Clark et al. in this volume) the use of decolonizing methods in conjunction with intersectionality shows how culturally safe practices that are based on Indigenous traditions and knowledge can enhance the lives and well-being of Aboriginal youth. Another example can be found in the intersectionality-informed work of Burman and Chantler (2003) on service responses to South Asian women who attempt suicide or self-harm. Their research reveals that race and culture are often privileged over gender by mental health providers in the development of culturally “sensitive” responses to the mental health concerns of women. This has led to an increased trend in the United Kingdom towards using traditional healers in the context of South Asian mental health services; however, Burman and Chantler (2003) found that these interventions (like many in mainstream mental health services) sometimes reinforced heterosexism and sexism and, thus, oppressive practices against South Asian women. Furthermore, though still in its nascent stages, intersectionality is beginning to be used to guide policy development, analysis, and implementation (for example, Hankivsky, 2012; Parken, 2010). Examples of policy applications include the Intersectionality-Based Policy Analysis Framework

48  Marina Morrow

(IBPA) (Hankivsky, 2012) and the multi-strand method (Parken, 2010), both of which have been used in the Canadian context by policymakers and providers seeking to apply intersectionality to their work (Hankivsky, 2012; Morrow, Battersby, Cook, & Hardie, 2014). A recent example can be found in the use of the multi-strand method in British Columbia to examine the policy of self-directed care in mental health. In self-directed care, people experiencing mental distress get financial supports to choose the kind of services and supports they can access, including non-medical supports (Alakeson, 2008; Cook et al., 2010; Cook, Morrow, & Battersby, in press). The multi-strand method involves convening an “evidence panel,” comprising policy actors and service providers that represent different equity groups (“strands”). The panel then undergoes a series of workshops designed to help develop equitable social policies (Parken, 2010). One group in British Columbia that used the multi-strand method came to understand the structure of mental health care payments in the Canadian public health care system, the way in which these favoured particular kinds of services (psychiatric) over others (psychological or social services), and the role that successive governments have played with respect to the retrenchment of the welfare state and the proliferation of neoliberal ideologies (Cook, Morrow & Battersby, in press; Morrow et al., 2014). Thus, the multi-strand method surfaced numerous systemic barriers that were consistent with an intersectional understanding of the role of power and its distribution in the mental health care system (Morrow et al., 2014). Meanwhile, the emerging field of Mad studies is a project dedicated to the study of madness and psychiatrization, and the oppression and agency of Mad subjects (LeFrançois, Menzies, & Reaume, 2013). Mad studies emerged historically from the work of Mad activists (following on the legacy of the mental patients’ liberation movement) who were protesting the abuses of psychiatry and documenting their lived experiences of what was labelled mental illness. As this activism merged with the work of academics, Mad studies began to coalesce into a distinct field, drawing some of its ideas from the field of critical disability studies, which is dedicated to exploring the role of the social and the political in defining disability and in deconstructing what constitutes the “normal” body (Corker & Shakespeare, 2002; Davis, 1998; LeFrançois, Menzies, & Reaume, 2013). Described as an “interdisciplinary and multi-vocal” praxis (LeFrançois, Menzies, & Reaume, 2013, p. 13), Mad studies brings activists, scholars, and people with lived experience together to push the boundaries of what we understand as mental illness and to challenge the complex power relations at play in mental health.

“Women and Madness” Revisited  49

Although there are some interesting historical convergences between the development of intersectionality and the theorizing of sanism as a form of discrimination against people diagnosed with mental illness (Ingram, 2011; Perlin, 2000), Mad studies activists and scholars are only just beginning to adopt intersectional frameworks in their work (for example, Gorman, 2013; Legghio, 2013; Tam, 2013). Thus, intersectional Mad studies scholars are beginning to name sanism as a form of oppression akin to sexism and racism, and to explore the implications of this for understanding experiences of madness, as well as for policy and practice in mental health (Gorman, 2013; Ingram, 2011; Ingram et al., 2013; Morrow & Weisser, 2012; Perlin, 2000). Gorman (2013), for example, discusses the politics of the current Mad movement and cautions against an emerging “Mad nationalism,” which can fall into the trap of essentializing madness and blunt the wider intent of anti-oppression work that seeks to draw connections between madness and other forms of oppression. The integration of an intersectionality paradigm in Mad studies has the potential to attend to interacting forms of oppression and privilege, including through analyses of the power vested in psychiatry, the structure of mental health care, and the lived experiences of Mad people. An intersectional Mad studies approach can provide a framework that is attentive to both the lived experiences of mental distress and the structural contexts in which that distress emerges and is experienced. This approach can also provide us with new language and ways of understanding these experiences that do not re-inscribe strictly biomedical understandings of mental distress. Although clearly feminists are key contributors to Mad studies’ theorizing and activism, the concept of sanism has not yet been fully explored for its contributions to intersectional theorizing. Thus, intersectional scholars must begin to think about the ways in which sanism constitutes a form of oppression, and to work on theorizing sanism as it manifests in conjunction with other social processes. Currently a tension is at play between intersectional scholarship and Mad studies scholarship, a tension that must be exploited to a productive end: a more cogent analysis of the structural foundations of social inequities as they play out in the lives of people subject to psychiatric interventions. Intersectional Mad studies approaches have the ability to inform current Mad activism and to reignite feminist activism surrounding the lived experience of mental distress. Finally, these approaches can powerfully speak back to biomedicalism and neoliberalism by mobilizing activism that resists the state’s attempts to isolate and individualize human experiences.

50  Marina Morrow NOTES 1 The terms used to describe this movement have varied. Groups forming in the early 1970s tended to use mental patients’ liberation, mad liberation, and insane liberation (see Chamberlin, 1990, and Chabasinski, 2014). In the 1980s and 1990s psychiatric survivor movement began to be used (Capponi, 2003). Currently, psychiatric survivor, Mad activism, Mad pride, and Mad politics are all in use. 2 It should be noted that the actual individuals who participated in these various forms of activism sometimes overlapped; that is, some feminists were also anti-psychiatry activists, and some anti-psychiatry activists were also mental health professionals. 3 Although the author uses examples from her own research and that of others in Canada and British Columbia, they have relevance to other jurisdictions. 4 As discussed in the introduction, the language used to describe various mental states is highly political and often contested (see Burstow, 2013, for a discussion of terminology in mental health). In this chapter I favour the term mental distress because it de-emphasizes the biological connotations of more traditional terms like mental health and mental illness. I retain the use of the terms mental health and mental illness when they are being used to describe a context in which these terms are routinely used. 5 Many conferences have offered a critical perspective on psychiatry. Three recent ones in the Canadian context are the Madness, Citizenship, and Social Justice Conference in Vancouver, 12–15 June 2008 (http://www.sfu.ca/ madcitizenship-conference/); Psych Out: A Conference for Organizing Resistance against Psychiatry, in Toronto, 14 October 2009; and the annual Critical Inquiries workshops organized by the Centre for the Study of Gender, Social Inequities, and Mental Health, in Vancouver (2009–2014) (http://www .socialinequities.ca). 6 It should be noted that some Mad activists eschew an illness framing altogether in favour of an understanding of madness as productive (Fabris, 2011; O’Hagan, 2014). 7 By “style of thought” Rose is suggesting that biological psychiatry is so normalized as the dominant discourse that it becomes a routine way of thinking about mental health and mental illness. 8 Responsibilization is “a term developed in the governmentality literature to refer to the process whereby subjects are rendered individually responsible for a task which previously would have been the duty of another – usually a state agency – or would not have been recognized as a responsibility at all” (O’Malley, 2009, p. 276).

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56  Marina Morrow Morrison, L. (2005). Talking back to psychiatry: The psychiatric consumer/ survivor/ex-patient movement. New York: Routledge. Morrow, M. (2007). Critiquing the “psychiatric paradigm” revisited: Reflections on feminist interventions in mental health. Resources for Feminist Research / Documentation sur la recherche féministe, 32(1/2), 8–14. Morrow, M. (2008). Women, violence and mental illness: An evolving feminist critique. In C. Patton & H. Loshny (Eds.), Global science/women’s health (pp. 147–74). New York: Cambria Press. Morrow, M. (2013). Recovery: Progressive paradigm or neoliberal smokescreen? In B.A. Lefrançois, R. Menzies, & G. Reaume (Eds.), Mad matters: A critical reader in Canadian Mad studies (pp. 323–33). Toronto: Canadian Scholar’s Press. Morrow, M., Battersby, L., Cook, J., & Hardie, S. (2014). Policy tools for advancing equity in mental health (unpublished paper). Morrow, M., Frischmuth, S., & Johnson, A. (2006). Community-based mental health services in BC: Changes to income, employment and housing supports. Vancouver: Canadian Centre for Policy Alternatives. Morrow, M., Smith, J., Pederson, A., Battersby, L., Josewski, V., & Jamer, B. (2010). Relocating mental health care in British Columbia: Riverview hospital redevelopment, regionalization and gender in psychiatric and social care. Vancouver: Centre for the Study of Gender, Social Inequities and Mental Health. Morrow, M., Wasik, A., Cohen, M., & Perry, K.-M.E. (2009). Removing barriers to work: Building economic security for people with mental illness. Critical Social Policy, 29(4), 655–76. http://dx.doi.org/10.1177/0261018309341904 Morrow, M., & Weisser, J. (2012). Towards a social justice framework of mental health recovery. Studies in Social Justice, 6(1), 27–43. Nana-Ama Danquah, M. (1999). Willow weep for me: A Black women’s journey through depression. New York: Ballentine Publishing. National Collaborating Centre for Methods and Tools (2012). Conducting a health equity impact assessment (HEIA): MOHLTC tool. Hamilton, ON: McMaster University. Retrieved from http://www.nccmt.ca/registry/view/eng/146.html O’Hagan, M. (2014). Madness made me: A memoir. Wellington, New Zealand: Open Box. O’Malley, P. (2009). Responsibilization. In A. Wakefield & J. Fleming (Eds.), The SAGE dictionary of policing (pp. 276–8). London: Sage. Parken, A. (2010). A multi-strand approach to promoting equalities and human rights in policy making. Policy and Politics, 38(1), 79–99. http://dx.doi.org/ 10.1332/030557309X445690 Pederson, A., Hankivsky, O., Morrow, M., & Greaves, L. (2003). Exploring concepts in gender and health. Ottawa: Health Canada. Penfold, S., & Walker, G. (1983). Women and the psychiatric paradox. Montreal: Eden Press.

“Women and Madness” Revisited  57 Perlin, M. (2000). The hidden prejudice: Mental disability on trial. Washington, DC: American Psychological Association. http://dx.doi.org/10.1037/ 10379-000 Pickersgill, M. (2012, November). What is psychiatry? Co-producing complexity in mental health. Social Theory & Health, 10(4), 328–47. Medline:23226975 http://dx.doi.org/10.1057/sth.2012.9 Rose, N. (1996). Governing “advanced” liberal democracies. In A. Barry, T. Osborne, & N. Rose (Eds.), Foucault and political reason: Liberalism, neoliberalism and rationalities of government (pp. 37–64). London: UCL Press. Rose, N. (2007). The politics of life itself: Biomedicine, power and subjectivity in the twenty-first century. Princeton, NJ: Princeton University Press. http:// dx.doi.org/10.1515/9781400827503 Rose, N. (2014). Five minutes with Nikolas Rose: “The imperative to make exaggerated promises about impact is damaging to the science itself” (interviewed by C. Gilson). Retrieved from http://blogs.lse.ac.uk/impactofsocialsciences/2014/ 02/06/five-minutes-with-nikolas-rose/ Rossiter, K., & Morrow, M. (2011). Intersectional frameworks in mental health: Moving from theory to practice. In O. Hankivsky (Ed.), Health inequities in Canada: Intersectional frameworks and practices (pp. 312–30). Vancouver: UBC Press. Seikkula, J., Aaltonen, J., Alakare, B., Haarakangas, K., Keränen, J., & Lehtinen, K. (2006). Five-year experience of first-episode non-affective psychosis in open-dialogue approach: Treatment principles, follow-up outcomes, and two case studies. Psychotherapy Research, 16(2), 214–28. http://dx.doi.org/10.1080/ 10503300500268490 Shaw, C. & Proctor, G. (2005). Women at the margins: A critique of borderline personality disorder. Feminism and Psychology, 15, 483–90. Shimrit, I. (Ed.). (1997). Call me crazy: Stories from the Mad movement. Vancouver: Press Gang. Smith, A., Stenning, A., & Willis, K. (2008). Social justice and neoliberalism: Global perspectives. London: Zed Books. Smith, D., & David, S. (Eds.). (1975). Women look at psychiatry. Vancouver: Press Gang. Status of Women Canada. (2014). A guide to building organizational capacity for gender-based analysis plus (GBA+). Ottawa: Status of Women Canada. Retrieved from http://www.swc-cfc.gc.ca/gba-acs/framework-cadre-en.html Summerfield, D. (2012, July). Afterword: Against “global mental health.” Transcultural Psychiatry, 49(3-4), 519–30. Medline:23008353 http://dx.doi .org/10.1177/1363461512454701 Szasz, T. (1961). The myth of mental illness: Foundations of a theory of personal conduct. New York: Harper & Row.

58  Marina Morrow Tait, C.L. (2008). Ethical programming: Towards a community-centred approach to mental health and addiction programming in Aboriginal communities. Pimatziwin, 6(1), 29–60. Retrieved from http://www.pimatisiwin.com/ uploads/445206868.pdf Tam, L. (2013). Whither indigenizing the Mad movement? Theorizing the social relations of race and madness through conviviality. In B.A. LeFrançois, R. Menzies, & G. Reaume (Eds.), Mad matters: A critical reader in Canadian Mad studies (pp. 281–97). Toronto: Canadian Scholars Press. Tang, S.Y., & Browne, A.J. (2008, April). “Race” matters: Racialization and egalitarian discourses involving Aboriginal people in the Canadian health care context. Ethnicity & Health, 13(2), 109–27. Medline:18425710 http://dx.doi .org/10.1080/13557850701830307 Teghtsoonian, K. (2008). Managing workplace depression: Contesting the contours of emerging policy in the workplace. In K. Teghtsoonian & P. Moss (Eds.), Contesting illnesses: Processes and practices (pp. 69–89). Toronto: University of Toronto Press. Thachuk, A. (2011). Stigma and the politics of biomedical models of mental illness. International Journal of Feminist Approaches to Bioethics, 4(1), 140–63. http://dx.doi.org/10.2979/intjfemappbio.4.1.140. Thornicroft, G., & Rose, D. (2005, January). Health services research: Is there anything to learn from mental health? Journal of Health Services Research & Policy, 10(1), 1–2. Medline:15667695 http://journals.sagepub.com/doi /full/10.1177/135581960501000101 Tsemberis, S., Kent, D., & Respress, C. (2012, January). Housing stability and recovery among chronically homeless persons with co-occuring disorders in Washington, DC. American Journal of Public Health, 102(1), 13–16. Medline:22390393 http://dx.doi.org/10.2105/AJPH.2011.300320 U’Ren, R. (2011). Social perspective: The missing element in mental health practice. Toronto: University of Toronto Press. Ussher, J. (1991). Women’s madness. Hemel Hempstead, UK: Harvester Wheatsheaf. Ussher, J. (2005). Unravelling women’s madness: Beyond positivism and constructivism and towards a material-discursive-intrapsychic approach. In W. Chan, D.E. Chunn, & R. Menzies (Eds.), Women, madness and the law: A feminist reader (pp. 19–40). London: GlassHouse Press. Ussher, J. (2011). The madness of women: Myth and experience? New York: Routledge. Van Veen, C., Teghtsoonian, K., & Morrow, M. (forthcoming). Enacting violence and care: Neoliberalism, knowledge claims and resistance. In A. Daley, L. Costa, & P. Beresford (Eds.), Madness, violence and power: A radical anthology. Toronto: University of Toronto Press.

“Women and Madness” Revisited  59 Waddell, C., Lavis, J.N., Abelson, J., Lomas, J., Shepherd, C.A., Bird-Gayson, T., ... Dan Offord, D.R. (2005, October). Research use in children’s mental health policy in Canada: Maintaining vigilance amid ambiguity. Social Science & Medicine (1982), 61(8), 1649–57. Medline:16029772 http://dx.doi.org/10 .1016/j.socscimed.2005.03.032 Whitehead, M., Petticrew, M., Graham, H., Macintyre, S.J., Bambra, C., & Egan, M. (2004, October). Evidence for public health policy on inequalities: 2, Assembling the evidence jigsaw. Journal of Epidemiology and Community Health, 58(10), 817–21. Medline:15365105 http://dx.doi.org/10.1136/jech .2003.015297 Willis, K., Smith, A., & Stening, A. (Eds.) (2008). Introduction: Social justice and neoliberalism. In A. Smith, A. Stenning, & K. Willis (Eds.), Social justice and neoliberalism: Global perspectives (pp. 1–15). London: Zed Books. Yalnizyan, A. (2005). Canada’s commitment to equality: A gender analysis of the last ten federal budgets (1995–2004). Ottawa: Canadian Feminist Alliance for International Action (FAFIA). Retrieved from http://www.policyalternatives .ca/sites/default/files/uploads/publications/National_Office_Pubs/2005/Canada_ Commitment_To_Equality.pdf

2 A “Third Space” for Doing Social Justice Research viviane josewski

The recognition that systematic differences in health outcomes within and across populations are largely determined by social factors and, hence, are remediable through social and political action has moved the concern for health equity and social justice high on national and global research agendas (World Health Organization [WHO], 2008, 2013). Thus, the goal to reduce inequities in health has become a major public health priority; yet, “how to best achieve this goal is not well understood” (Smith, Smith, Harper, Manuel, & Mustard, 2014, p. 384). To date, Canada, like many other countries, has not made significant strides in advancing equity and social justice. Developing effective responses to inequities in health is challenging given the complex nature of social inequities in health and the multiple injustices associated with them (Hankivsky, 2011). This is particularly true for inequities in mental health,1 which, though embedded within “the context of specific social and structural determinants of health,” have been said to “operate distinctly and are overlaid with the additional stigma and discrimination that often accompanies a mental illness diagnosis” (Ingram, Wasik, Cormier, & Morrow, 2013, p. 6). Social justice–oriented research that sheds light on the ways in which multiple systems of oppression and domination are linked and operate within different contexts is thus especially important. At the same time there remains a significant degree of ambiguity within the literature on health inequities when it comes to defining the meaning of social justice (Braveman, 2014; Ingram et al., 2013). This observation highlights the little interest that the field has shown until recently in engaging the work of ethical and political philosophy and thus its potential relevance, and indeed “criticality,” for improving the understanding of and responses to social inequities in health (Peter & Evans, 2001).

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The uncritical reliance on poorly defined and inadequately theorized conceptions of social justice and equity must not be mistaken for an absence of ethical discourse. As inequities in health refer to those differences in health that are deemed to be “unfair and unjust” (Whitehead & Dahlgren, 2006, p. 4), any engagement with the matter is thus bound to involve some value judgment, whether or not the underlying ethical reasoning is made explicit (Peter & Evans, 2001). This means that it is not always clear which discourse informs which theoretical approach and framework for addressing inequities in health (Kirkham & Browne, 2006). Moreover, while common agreement exists on the values of equality and fairness underpinning the notion of social justice, there are growing concerns that these common-sense agreements may have “obstructed rigorous scrutiny and obscured significant tensions in its [social justice’s] application to policy,” as well as practice and research (Kirkham & Browne, 2006, p. 324; Sherwin, 2012; Varcoe, Pauly, & Laliberte, 2011). Such concerns have to be understood within the context of multiple, competing social justice discourses, which are in turn informed by numerous and at times contradictory ethical and social theories (Pauly, 2008; Young, 2011). To engage in any meaningful discussion about social justice in mental health, it is therefore critical to push further into the ethical and moral domain. In this chapter I undertake a critical reading of social justice discourses in relation to mental health inequities to consider more explicitly the ways in which theories of ethics, society, and social change inform contemporary conceptions of social justice, and their application in mental health research, policy and practice. Starting with a brief survey of the major frameworks for theorizing inequities in mental health, I explore how different understandings of, and responses to, studying and redressing inequities in mental health interface with different ethical theories and justice paradigms. This is not intended to be a comprehensive review of social justice theories and frameworks; rather, it is meant to illuminate the underlying values, beliefs, and assumptions and to enhance understanding of the potential weaknesses, strengths, and possibilities of different ethical frameworks and notions of social justice for theorizing social inequities in mental health and enacting social justice agendas. Pursuing this line of thought further in the next section of the chapter, I explore the policy, research, and practice implications of adopting a health equity lens that is informed by a critical relational conception of social justice in mental health. I begin by offering some thoughts on what mental health service delivery and policy would look like if a value was placed on

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a critical relational understanding of mental health inequities. I then shift the gaze to critically reflect on the meaning of a relational ontology for social justice as a fundamental starting point for research, explicating epistemological and methodological compatibilities and discrepancies with what might be considered disparate theoretical traditions and research paradigms. While I want to be cautious to not discount the importance of the research undertaken from any particular research paradigm, a core argument of this chapter is that the way in which we conceive of the relationship between society and its individual constituents has implications not only for the explanatory methodology but also for the version of social justice that is, and in consistency can be, endorsed. In keeping with this view, I conclude by endorsing intersectionality as a research paradigm that is particularly fitting to, and able to accommodate, a critical relational conception of social justice in mental health. Frameworks for Understanding Inequities in Mental Health From a review of the literature, it quickly becomes apparent that the various theoretical frameworks for conceptualizing inequities in mental health lead to differences – some subtle, others less so – that carry important implications for framing research problems and methods and for understanding the causes and outcomes of, and interventions for, inequity in mental health. A dominant approach to examining inequities in mental health utilizes a social determinants framework. This perspective emerges primarily from the field of population and public health, and links social factors as defined by socio-economic position, race or ethnicity, gender, and so on, to differences in health outcomes between and within different populations (Raphael, 2006). Within the burgeoning literature on the social determinants, the predominant moral concerns are the inequitable distribution of resources, such as income, housing, and access to health services, and the unfairness in the social patterning of health outcomes according to such differences as gender, race, class, and disability (Graham, 2004). Frictions exist within this social determinants approach, however (Graham, 2004; Raphael, 2006). Both Graham (2004) and Raphael (2006) criticize social determinants frameworks for inadequately theorizing and responding to the structural determinants that drive inequities in mental health. Moreover, as a growing cadre of critical mental health scholars contend, “although the context and specific social and structural determinants for health can overlap with mental health, inequities in mental health also operate distinctly and are overlaid with the additional stigma and

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discrimination that often accompanies a mental illness diagnosis” (Ingram et al., 2013, p. 6). For example, unlike for most other physical illnesses, treatment for mental illness sees people with psychiatric diagnoses routinely stripped of their rights (for example, involuntary hospitalization) on the basis of mental health laws. Reflecting the perspectives of people with lived experiences of mental health diagnoses, Mad and psychiatric survivor movements argue that sanism and psychiatrization are key axes for understanding the social justice claims arising from inequities in mental health. Sanism denotes the structural forms of discrimination produced through hegemonic assumptions about rationality, normality, and madness that affect people with a mental health diagnosis (Diamond, 2013; Perlin, 2003). Psychiatrization is a structural form of oppression and inequity that, along with other forms of oppression, systematically pathologizes, stigmatizes, and discriminates against people diagnosed with mental illness (Liegghio, 2013). In keeping with a characterization of social justice in terms of oppression and domination, another burgeoning approach to studying mental health inequities emerges from intersectional and post-colonial frameworks. Building on the foundational work done by Black and Indigenous feminists, intersectional scholars foreground understandings of mental health in its multiple and simultaneous intersections with social inequities, including racism, classism, and genderism (Collins, 2004; Hankivsky, 2011; hooks, 1989). Taking an explicit focus on colonialism2 and ongoing manifestations of neocolonialism, post-colonial feminist perspectives draw attention to unequal relations of power that are the legacy of the colonial past and the neocolonial present, and other forms of unequal relations embedded within mental health policy, programming, and practice (Anderson, 2004; Browne, Smye, & Varcoe, 2005). As the preceding examination of contemporary approaches illustrates, there is little doubt that the concept of social justice is central to current scholarship and policy development. Nonetheless, rather than providing substantive direction for research, policy, and practice, current conceptualizations of social justice tend to be fragmented and incoherent (Daniels, 2006; Peter, 2001). Social Justice at the Crossroads: The Intersections of Ethical Theory and Mental Health Inequities To date, little interdisciplinary dialogue has occurred regarding the interface between ethical theories and the theorizing of mental health and social

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inequities. While the paradigm shift from a predominantly biomedical understanding towards a broader social understanding of health and illness has been instrumental in establishing a growing interdisciplinarity between health sciences and social sciences, such critical interdisciplinary exchange has rarely been extended to questions of applied moral philosophy (Ruger, 2010). Meanwhile, theories of social justice within the literature on moral and political philosophy have historically been silent on the topic of health (Peter, 2001). Exploration of the merits of different ethical theories and approaches to social justice in relation to the multiple frameworks for understanding, studying, and addressing mental health inequities is thus an important starting point for the discussion of equity in mental health. Turning to the literature on moral and political philosophy, I begin by reviewing some traditional philosophies of social justice and their implications for conceptualizing inequities in mental health, their root causes, and their remedies. I then offer an alternative view of social justice that promotes a relational theorizing of social justice claims to encompass matters of recognition and participation, and inequities in mental health.

The (Re)Distributive Paradigm, Social Justice, and Mental Health Historical and contemporary theories of social justice have often revolved around the (re)distributive justice paradigm (Beauchamp & Childress, 2001). At the core of this paradigm is a concern with the “morally proper distribution of social benefits and burdens among society’s members” (Young, 2011, p. 16). In determining what constitutes a fair distribution, however, social justice discourses within the (re)distributive paradigm draw on different ethical theories, including utilitarian, libertarian, and egalitarian theories (Beauchamp & Childress, 2001), each proposing different criteria, applications, and justifications for conceiving social justice in mental health. u t i l i ta r i a n a p p r o a c h e s

Interested only with maximizing the common good, utilitarian judgments about social justice place a distinct premium on social utility to the exclusion of any concern about the distribution of benefits and burdens – apart from consequences for the aggregate welfare (Beauchamp & Childress, 2001). Nevertheless, utilitarian thought remains deeply entrenched in public policy (Venkatapuram & Marmot, 2009) and, in particular, mental health policy (Ibell, 2004). For example, as Wodak (2007) highlights, utilitarian arguments bear strongly on current discussions about harm-reduction

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approaches to substance use, showing little or no ethical concern for the injustices and structural inequities that make up the social context of substance-use and harm-reduction practices (Pauly, 2008). Instead, current political debates about the harms and the costs of harm reduction tend to be dominated by individualistic decontextualized understandings of addictions and by a conception of social justice that is concerned only with the harms of drug use pertaining to the aggregate welfare of society. Drawing attention to the increased surveillance of individuals accessing methadone maintenance treatment, as well as to the ongoing stigma and discrimination they face, Smye et al. (2011), for example, argue for more nuanced inquiries into the complex intersections of harm-reduction practices with mental illness, stigma, and other forms of discrimination and social exclusion. These are ethical issues that a purely utilitarian-informed ethics can neither capture nor problematize. l i b e r ta r i a n r i g h t s - b a s e d a p p r o a c h e s

As libertarianism “endorse[s] individual rights, individual freedom, and the liberal idea that people ought to be free to determine their conduct and lives as they see fit, so long as they do not violate others’ rights,” it is often referred to as a strand of liberalism (Palmer, 2009, p. 123). In keeping with this view, libertarian theories of social justice emphasize a rightsbased approach to social and economic liberty (Beauchamp & Childress, 2001). Similar to human rights–based approaches, which are increasingly evoked by health inequities scholars to portray inequities in health as human rights violations (see for example Ibell, 2004, and Tarantola, 2007), a libertarian view focuses on rights as the relevant unit of social justice, which are understood to be equally applicable to “every human being, regardless of gender, color, religion, language, family, or other accidental feature” (Palmer, 2009, p. 18). However, there are a number of distinguishing features of libertarianism, which include the moral superiority that it places on individual property and negative rights, in particular the right to non-interference, and on the rule of law rather than the political authority of the state (that is, the idea of the minimal state) (Freeman, 2001). A libertarian discourse is thus commensurate with the tenets of neoliberal ideology (for example, individualism, free market) and its contemporary policy manifestations (for example, dismantling of the welfare state, privatization, deregulation) (Larner, 2000), wherein positive obligations of governments are almost never considered reliable prima facie and thus tend to become indirectly subject to legal rather than moral interpretations of obligations (Minkler, 2008). For example,

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as Macfarlane (2013) argues, in Canada government responses to access cases raised through the Canadian Charter of Rights and Freedoms have been truncated to delegating responsibility to the judicial system, especially in controversial cases, such as access to abortion or supervised injection facilities. This is problematic because courts too are generally reluctant to enforce positive obligations (Macfarlane, 2013). Similarly, it is easy to say that freedom from coercive and often abusive treatment practices, such as forced sedation, seclusion, and restraint, has ­intrinsic value and that it is a prerequisite for redressing institutional retraumatization of people with mental health and substance use issues. However, without attending to the structural and social conditions for freedom to exercise autonomy in matters that affect peoples’ lives, this ethics promotes an “impoverished conception” of social justice (Wildeman, 2012, p. 267). Building upon Susan Sherwin’s (2012) and Jennifer Nedelsky’s (2012) concepts of relational autonomy and judgment respectively, Wildeman (2012), for example, unpacks the liberal ideal of autonomy and the associated ideal of rationalist liberal individualism, which underpin the pathologizing, explanatory model of psychiatric assessments of decision-making capacity as a basis for involuntary psychiatric treatment. Psychiatrized people enter a double bind when facing a “forced choice between negative freedom and psychiatric paternalism” (Wildeman, 2012, p. 280). Thus, “to truly support the autonomy of oppressed patients and research subjects, what is often required is serious change in the social circumstances in which the choice is being made” (Sherwin, 2012, p. 18). e g a l i ta r i a n t h e o r i e s

Egalitarian theories of distributive justice acknowledge that people’s life opportunities are not utterly under their control and that it is therefore up to the state to equalize differences in advantage and disadvantage that lead to unfair distributions of opportunities and outcomes (Beauchamp & Childress, 2001). For example, according to Rawls’s theory of justice as fairness (1971) – regarded by many as a milestone in twentieth-century political philosophy – social inequalities are “inevitable in the basic structure of any society” (p. 7) and arise from both the “social” and the “natural lottery” of life (p. 72). Owing to this presumably random distribution of primary social and natural goods, for Rawls, social justice resides in the ways in which social institutions “distribute [or, more precisely, redistribute] fundamental rights and duties and determine the division of advantages from social cooperation” (Rawls, 1971, p. 7).

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Within this conception, issues of inequalities in health are firmly placed within the category of natural goods – that is, outside the disposition of society and the realm of social responsibility. Rawls’s theory thus does not easily translate into a right to health, although this “does not necessarily apply to health care, which is a social benefit that resides considerably more in our power to distribute equitably through external and potentially enforced or enforceable means” (Van Niekerk, 2005, p. 85). Moreover, in keeping with the assumption that most adults are healthy, able bodied, and autonomous, Rawls’s development of social justice as fairness centres on the individual rights and duties of independent or autonomous moral agents. As feminists and care ethicists have pointed out, such morality is problematic because it implicitly construes dependency as a difference measured against a standard of normal, as in “normal mental health” or a “normal healthy body,” and fails to take into account the realities of human interdependence and “the kinds of needs [and responsibilities] that arise from these experiences” (Hankivsky, 2004, p. 42; Sherwin, 2002, 2012). According to Morris (2001) and others, this is particularly relevant to social justice issues experienced by people with physical, mental, and/or cognitive impairments because it systematically effaces their voices and experiences of vulnerability as recipients of care (Liegghio, 2013). To address this, Morris (2001) argues for a stance that acknowledges that “independence is not about doing everything for yourself but about having control over how help is provided” (p. 8). In a similar but somewhat different critique, Amartya Sen (1999) argues that what really matters is the substantial freedoms of individuals to convert goods and services (means) into capabilities to live well (ends). According to Sen’s proposed capability approach, such variations in people’s substantial freedoms arise from personal and socio-environmental factors; some of these differences will be individual, while others will be structural, related to gender, class, race, caste, and so on. Conceptually, Sen’s framework has been lauded for helping to put human agency, coupled with a concern for context, at the centre of the stage of social justice claims. Yet, as critics of Sen have pointed out, his capability approach lacks substantive direction for determining the how and the why of social justice claims (Deneulin & McGregor, 2010; Robeyns, 2003). This is not to say that capabilities-informed approaches have not been useful to some critical scholars in interrogating how structural inequities in mental health operate (see for example the work of Kim Hopper, 2012), but their criticality and analytical leverage, as it pertains to advancing the understanding of

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social justice in mental health, will depend on the particular features of theorizing applied. Read together with the preceding evaluation of other distributive justice theories, such a critique points to a more general limitation: “the distributive paradigm implicitly assumes that social judgments are about what individual persons have, how much they have, and how the amount compares with what other persons have” (Young, 2011, p. 25). As a result, Young (2011) argues, (re)distributive theories view individuals as passively positioned consumers of services and interventions, and preclude an understanding of the social, political, and ethical meaning of human differences that arise from gender, class, race, ethnicity, sexuality, ability, and geographic location. This is problematic because, as illustrated above, to morally assess the complex inequalities experienced by people with mental health concerns, social justice theories must be able to address the intersecting issues of voice, institutionalized patterns of cultural valuing, and unequal power relations that give rise to people’s profound experiences of discrimination, suffering, and oppression. For this reason (re)distributive justice claims aimed at advancing equity in mental health are at best weak and at worst precarious because of the inherent risk they present for reifying descriptions of positionality as attributes of individuals, rather than as socially constructed markers of unequal relations of power (Young, 2011). Take, as an example, the case of increased rates of poverty among people with both mental and physical impairments. Rather than studying the disabling and discriminatory environments that deny people labelled with disability access to adequate educational and employment opportunities, the (re)distributive social justice approach, because of its insensitivity to questions about the structural forces that shape the organizational and distributional practices of societies, tends to conceive of mental illness itself as the impeding factor in people’s ability to become educated or economically productive members of society. As Brock (2000) and others have claimed, such impoverished accounts of social justice and equity in the health sector have led to a tendency to “focus on healthcare to the exclusion of other factors that have greater impact on health and health inequalities” (p. 286). Thus, if we can agree that “we are concerned not just with health care but also with health outcomes, and if there are serious social inequalities in health outcomes that cannot be traced back to differential access to health care, then conceptions of health equity have to go beyond health care” (Peter, 2001, p. 160).

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Towards a Critical Relational Understanding of Social Justice in Mental Health In response to the shortfalls in theorizing social justice within the redistributive justice paradigm, a number of alternative ethical frameworks have been proposed. One such framework centres on an ethics of care, which originally emerged from a recognition of women’s experiences of caring responsibilities, and of interdependent relationships as being significant spheres of moral practices in the reality of most women’s lives (Hankivsky, 2004; Llewellyn & Downie, 2012; Sherwin, 2002, 2012). In this context some feminists and care ethicists have argued for the moral superiority of particular types of relationships, including mother-child and friendship, demanding their adoption as exclusive models for moral reasoning. However, more recent approaches converge on the need to expand this focus and find a meaningful relationship between the two distinct ethics of justice and care (Hankivsky, 2004; Sherwin, 2002). Feminist relational theorists begin from this insight. Informed by the postmodern recognition of group differences as fluid, multiple determined, and relationally mediated, relational approaches to social justice emphasize the heterogeneity of experiences (Gewirtz, 1998). As Koggel (2012) elucidates, a distinguishing feature of relational accounts of social justice is thus that “liberal theory’s cherished notions of autonomy, justice, or equality are not relinquished, but, instead, they are reinterpreted in and through the network of complex and ever-changing relationships in which each of us is situated” (p. 71). In so doing, Llewellyn and Downie (2012) explain, “their starting point facilitates a revision of dependence, independence, and interdependence and an approach with which to evaluate and consider these relationships and their implications” (p. 7). social justice as a politics of recognition

In keeping with this relational understanding, Iris Marion Young (2011) proposes a politics of difference as an alternative, politicized foundation for social justice theorizing. Such politics attend to the “importance of social group differences in structuring social relations and oppression” and help to shed light on economic, cultural, and political forms of injustices that arise when certain groups of people are systematically denied recognition and voice to participate as full citizens (p. 27). Drawing on critical social movements and, in particular, on the Mad and disabled people’s movements, this moral focus on recognition makes Young’s framework

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particularly relevant to social justice issues that compromise the lives and life opportunities of people with psychiatric (and non-psychiatric) disabilities. Echoing Young’s call for recognition as a matter of social justice, Mad activism, for example, explicitly embraces “madness” as a legitimate state of being (LeFrançois, Menzies, & Reaume, 2013). As Liegghio (2013) explains, non-recognition of “psychiatrized people as legitimate knowers with legitimate knowledge and ways of being” in the form of epistemic violence constitutes a major form of injustice for people labelled with mental illness (p.  129). Recognition of “difference as legitimate” is therefore key to effecting a shift in the institutionalized patterns of cultural valuing that continue to pathologize, silence, and dehumanize people with various experiences of mental distress (Liegghio, 2013, p. 127), and ultimately to enabling “the forming of a positive identity” (Wildeman, 2012, p. 270). In a similar vein but with a different voice, Indigenous scholars have reiterated the need for recognition as a central dimension of collective and individual healing and recovery from trauma, mental health, and addictions problems (Clark, 2012). The historical tendency of the mental health care system in Canada has been to exclude the perspectives of First Nations, Métis, and Inuit peoples from mental health policy and programming (Josewski, 2012; Smye, 2004). Thus, though diverse, Indigenous scholarship collectively calls for social justice to be addressed through recognition and implementation of Indigenous self-determination, which as a goal of social justice “is expressed through and across a wide range of psychological, social, cultural and economic terrains” (Smith, 1999, p. 116). However, critics of Young’s framework have argued that by privileging difference Young’s approach fails to establish a normative grounding for determining social justice claims and adequately addressing the looming essentialism of identity politics (Fraser & Honneth, 2003b; Kirkham & Browne, 2006). Moreover, Fraser (2003), in particular, has challenged the subordinate position of (re)distributive justice in Young’s examination of social justice, asserting that issues of (re)distribution and recognition are equally imperative to an analysis of social justice. In response to such critiques, postmodern feminists have argued that, in keeping with an understanding of the contingency of knowledge and truth, the emphasis of a feminist ethics is not so much on fixing in place the “form or content of responsibility” but rather on enabling “the conditions of its possibility” (Shildrick, 2003, p. 188). As Shildrick (2003) puts it, this means that “the question of responsibility cannot be settled in advance, and it cannot – without loss – be assigned to any external and normative order” (p. 189). In that reading, the task of a responsible ethics must then

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be that “of exploring the possibilities of new connections that continually evolve across the terrain of unassimilable differences … [and] to negotiate the encounter between differences that have no fixed place and no foreseeable end” (Shildrick, 2003, pp. 190–1). In this vein, Young recognizes group identities and differences as multiple, contingent, unstable, and contradictory, and uses these as starting points for outlining a relational ontology of groups as fluid dynamics embedded within an ever-changing network. Analogously, social group differences, such as disparities in mental health, are, according to Young (2001), better understood as expressions of “structural inequality [that is] as a set of reproduced social processes that reinforce one another to enable or constrain individual actions in many ways” (p. 2). Thus conceived, oppression does not neatly fit the traditional dichotomous model of power, where an oppressed group needs to have a correlate oppressing group; rather, as Young suggests, oppression, like power in the Foucauldian sense, cannot be localized but is diffused, “employed and exercised through a net-like organization” (Foucault, 2000/1976, p. 98). The contribution of a politics of difference as a framework for social justice is to make visible and challenge those relations by allowing for group difference, dissent, and antagonisms in decision-making processes. By so doing, Young’s understanding of ethics allows for an open-ended, evolving, interactional, and negotiated process of making meaning of difference and its social, political, and economic implications. Moreover, Young’s model highlights the obligations, in the form of collective action, that diverse agents have because of their participation in structural social processes with unjust outcomes, and thereby offers new possibilities for discussing the interconnections of moral responsibility that diverge from standard models of moral and legal responsibility (that is, the liability model) (Young, 2006). Ultimately, Young’s alleged shortcoming of neglecting to specify universal normative notions for social justice may thus be more accurately described as an illustrative approach to “tak[ing] contingency seriously and accept[ing] the impossibility of fully determining the nature and parameters of any event in advance” (Shildrick, 2003, p. 192). Moreover, in taking up and further developing a relational ontology of social groups, Young’s model produces an affirmative feminist politics that approaches boundar­ ies as provisional and strategic, at the same time contesting the essential­ ism of identity politics and the assimilationist Western ideal of liberation that continuously seeks to transcend group differences. Outside the norma­ tive parameters of mainstream philosophy, Young’s politics of difference as a framework for social justice thus emerges as radical alternative to the

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individualistic foundationalism of a (re)distributive justice paradigm. And yet, it is precisely on this point that Young’s model can be challenged. ( r e ) d i s t r i b u t i o n , r e c o g n i t i o n , a n d pa r i t y o f pa r t i c i pat i o n Returning to Fraser’s insight into the subordinate place of redistributive justice in Young’s model, the fuller argument is that “justice today requires both redistribution and recognition” (Fraser, 2003, p. 9). While conceding with Young (2011) that “it is a mistake to reduce social justice to distribution” (p. 15), Fraser critiques social justice frameworks that conflate issues of maldistribution and misrecognition, epiphenomenalizing either class structure or status order to one another, and rendering it impossible to explore the intersections between them. This is problematic because insensitivity to the mutual imbrications of institutionalized relations of socio-­cultural status subordination and economic ordering “can give rise to unintended effects” that risk re-inscribing social and economic inequities (Fraser, 2003, p. 64). Academic and activist accounts (LeFrançois et al., 2013) of the roots of inequities faced by people with diagnoses of mental illness and/or disabilities in both misrecognition and misdistribution help illustrate this point. For this exercise it is useful to begin by separating out the analytically distinct types of impediments that psychiatric and other disabilities impose on participatory parity. One approach is to “disentangle the limitations associated with disabilities that are medical problems from those that are social problems, as well as from those disabilities that should not be considered problems at all but instead are manifestations of the inevitable unevenness of opportunities available at various stages of life” (Silvers, 2001, p. 58). Central to this is the conceptual differentiation of impairment from disability, as premised by the social model of disability (Morris, 2001). According to Morris (2001), experiences of impairment refer to “the functional limitations of our bodies and minds,” while the term disability is better understood as the disabling social barriers of discrimination, social stigma and prejudice that are reinforced and maintained through institutional discourses and practices (p. 2). In rethinking these concepts through Fraser’s lens of social justice, the concept of impairment invokes social justice issues associated with maldistribution, while that of disability constitutes a matter of misrecognition. To elaborate, a capitalist society oriented towards “optimal economic results” prioritizes efficiency (Hankivsky, 2004). People with functional impairments of their bodies and/or minds have been largely excluded or

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marginalized from the wage economy (Oliver, 1990), contributing to a systematic economic (and social) “devaluing of the ‘unproductive’ Mad bodies” (Tam, 2013, p. 285). As a result, people with psychiatric and non-psychiatric disabilities – especially chronic conditions – face significant barriers to employment (Morrow, Wasik, Cohen, & Perry, 2009). These structural inequities of economic arrangements function to systematically deny people with physical, mental, and/or intellectual impairments the means and resources they need to participate in public life as full citizens. As Morrow et al. (2009) discuss, a disproportionate number of people with disabilities, including psychiatric disabilities, are unemployed or underemployed, live in poverty, and are dependent on ongoing income and social supports, often in the form of welfare. This makes people with disabilities “particularly vulnerable to the caprices of welfare state restructuring” and suggests that any effective solutions for redressing these inequities must improve “access to a wide range of economic and employment supports” (Morrow et al., 2009, p. 669). Yet, despite international research evidence that establishes the conducive role of income supports and employment participation by people with psychiatric disabilities for mental health recovery, within Canada many opportunities to enact these strategies are missed. Overall responses by governments at both federal and provincial levels remain inadequate, and the relations to questions of difference as presented by diverse critical voices of and on behalf of psychiatrized people and people with disabilities remain undertheorized (Morrow et al., 2009; Tam, 2013). While substantive literature has challenged the conventional binaries of sanity-insanity (ability-disability) and criticized their discursive reproduction and oppressive consequences for people with mental illness and/ or disabilities (LeFrançois et al., 2013; Morris, 2001; Perlin, 2000; Silvers, 2001), the ethical framing of implications for mental health care has been predominantly centred on social justice claims for recognition, reflecting a discursive “decoupling of claims for recognition from claims for redistribution” (Fraser & Honneth, 2003a). For example, as Morrow et al. (2009) note, although the implications of welfare-state restructuring for health and well-being have been examined within the literature, “almost no documentation of the implications for mental health care exists in the Canadian context” (p. 656). As well, to date little attention has been paid to the ways in which different employment models intersect with the particularities of different impairments and diverse social locations that shape the lives of people with psychiatric disabilities (Morrow et al., 2009).

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This signals a crucial gap in understanding how the political economy of madness produces relational differences between people across sociopolitical and cultural contexts, with varying effects (Tam, 2013). Arguably, this gap also results in a structural barrier to effective support for the social justice goals of progressive recovery models and the practice of citizenship for people with psychiatric disabilities (Morrow et al., 2009). In this vein, Morrow et al. (2009) argue that to remove barriers to meaningful occupation, employment, and income security for people living with psychiatric disabilities requires “a move beyond the divide between employment and welfare, common to both neo-liberal and Keynesian/social democratic welfare regimes,” as well as a recognition of psychiatrized people as “deserving” (p. 670). Their differing needs would not then be pathologized but be seen as ethical entitlements for equitable involvement in decision-making in private and public matters that concern their lives. In much the same way, Fraser (2003) contends that any approach to social justice “must [therefore] allow for the full complexity of these relations” (p. 48); that is, it must account for the differentiation and “mutual irreducibility of maldistribution and misrecognition, as well as their practical entwinement with each other” (Fraser, 2003). To this end, she asserts, it is imperative to conceive of maldistribution and misrecognition as two analytically distinct yet interrelated dimensions of social justice. To integrate these dimensions into a single normative framework, Fraser (2003) adds the notion of parity of participation as the normative nexus of her conception of social justice. According to this norm, “justice requires social arrangements that permit all (adult) members of society to interact with one another as peers” (p. 36). Two conditions are prerequisite for participatory parity: “First, the distribution of material resources must be such as to ensure participants’ independence and ‘voice.’ Second, the institutionalized cultural patterns of interpretation and evaluation express equal respect for all participants and ensure equal opportunity for achieving social esteem” (p. 5). As taken up by a growing cadre of critical health scholars, such an integrated normative framework offers analytic leverage for analysing and reframing social inequalities in health and mental health by refocusing us to consider the intersecting impact of historically and socially mediated patterns of cultural valuing, as well as economic and political dimensions of distribution and representation, respectively, on health and human suffering (Kirkham & Browne, 2006; Morrow et al., 2009; Varcoe et al., 2011).

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Operationalizing a Critical Relational Interpretation of Social Justice in Mental Health Policy, Practice, and Research As different conceptions of social justice foreground certain dimensions of inequities and champion different, and at times conflicting, solutions for how to remedy these, by making explicit the particular conception of social justice employed, one not only “enhance[s] understanding of potential theoretical approaches to underpin action for addressing inequities” (Sherwin, 1999, as cited in Pauly, 2008, p. 7), but also maintains ethical integrity at each level of policy, practice, and research. For instance, if the objectives of social justice in mental health are interpreted through the normative lens of parity of participation for people living with mental health problems and/or diagnoses, the policy initiatives and interventions would have to address the multiple systems of oppressions that shape the lives and life opportunities of those people – ranging from concerns for inclusion in decision-making processes, to initiatives to decrease stigma, to the creation of a wide array of services, such as supportive and independent housing, educational opportunities, mechanisms for meaningful occupation, and income security. Thus, if a critical relational understanding of social justice were valued, then mental health service delivery and policy would be organized in ways that reflected a relational understanding of social inequities in mental health, which situates the lived experience of people with mental health issues within the context of multiple intersecting systems of oppression. Policymakers and service providers alike would need to acknowledge the ways in which they themselves, their actions, and institutions are implicated in the reproduction of structural violence3 – through the culture of the mental health care system that reinforces negative stereotypical conceptualizations of the Other through the practice of psychiatric labelling, as one example – and the moral obligations that spring from this. The explication of these moral obligations requires taking a number of proactive steps to realize a philosophy of care that extends beyond the boundaries of biomedicine and custodial models to relational and contextualized models of care that are grounded in the diverse perspectives and experiences of people with mental health issues and that are concerned with the economic, cultural, spiritual, and political dimensions of mental well-being. While the specific articulation of these steps depends on the particular community context, the creation of an empowerment council – an independent organization run by current or former clients of mental health

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and addictions services – and the introduction of the Bill of Client Rights at the Canadian Centre for Addiction and Mental Health (CAMH), for example, may offer some insight into the ways in which an organization can begin to change the organizational culture of mental health care systems by building on the philosophical foundations of the recovery model of care and the social justice principles of parity of participation, of recognition, and of redistribution. In the context of research, an explicit commitment to social justice and praxis that derives from such a critical relational interpretation of social justice directs us to turn the reflexive gaze inward and critically analyse whether our theoretical positioning and resulting methodological frameworks for studying inequities (such as those associated with mental health) are endorsed by our espoused social justice orientation and vice versa. In this regard, Kirkham and Browne (2006) point out that certain theoretical perspectives tend to promote different types of readings of social justice. Sharing a deep-rooted propensity to perceive reality as individualistic and static, empiricism and its attendant positivist or post-positivist methodologies and epistemologies, for example, are apt to prop up distributive aspects of social injustice, which, as an objective condition, can be accurately measured and diagnosed across diverse populations. One of the most contentious effects of this tendency is towards “upwards conflation” (Archer, 1995), which, in the field of theorizing mental health inequities, denotes the focus of the analytic gaze on inequalities in social position and an insufficient attention to the processes that shape this distribution (Graham, 2004). Such truncated models of the origins of health inequities, often masked by the language of the social determinants of health, not only prop up competing biomedical and behavioural explanations for inequalities in health, “thereby perpetuating myths and stereotypes about individuals with mental illness” (Rossiter & Morrow, 2011, p. 323), but also further the wider depoliticization of current policy-making approaches and frameworks. Within this depoliticized environment, government is demarcated from the public, and the role of policy is confined to determining the best way to distribute goods and allocate sparse resources to competing interest groups (Varcoe et al., 2011). Concerned with praxis-based notions of social change and explicitly oriented to analysing power differences between groups, inequities analyses from the paradigmatic stance of critical theory, however, appear to provide a better articulation and more complex appreciation of social justice along the lines of redistribution, recognition, and parity of participation. As Denzin and Lincoln (2011) sum up, diverse, contemporary critical

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theoretical approaches share a concern with moral discourse and have “become sites for critical conversations about democracy, race, gender, class, nation-states, globalization, freedom, and community” (p. 3). Broadly aligned with a relational understanding of social justice, critical theoretical perspectives might thus offer useful directions to researchers of health inequities. Having begun such theoretical work in the area of nursing, Kirkham and Browne (2006), for example, bring forward an argument for the value of post-colonial feminism as a critical theory distinctly concerned “with disrupting the history of ‘race-thinking’ and the social-structural inequities that have ensued as a result of racialized relations” (p. 335). This concern, they argue, makes post-colonial feminism useful for operationalizing a critical relational interpretation of social justice grounded in the notions of redistribution, recognition, and parity of participation. Undertaking a similar analysis in the field of health policy, Varcoe et al. (2011) argue for the relevance of intersectionality as a framework for conceptualizing both distributive and social questions of justice and equity and for addressing social inequities in health. According to Browne, Varcoe, and Fridkin (2011), “intersectional analyses are inherent to research that draws on post-colonial feminist theories” (p. 297). Recently intersectionality has been reframed, however, as an alternative research paradigm (Hancock, 2007; Hankivsky, De Leeuw, Lee, Vissandjee, & Khanlou, 2011) – one that is particularly pertinent to Fraser’s call for a non-conflationary theorizing of social justice. Intersectionality, Social Justice, and Mental Health Inequities Analytically oriented to explicating the relationality of different systems of domination, processes of differentiation, and social categories of difference and identities (Hankivsky, Grace, Hunting, & Ferlatte, 2012, p. 16), intersectional analyses draw attention to the ways in which social inequities in mental health are created through the interlocking effects of institutionalized patterns of culture valuing and/or economic structure, wherein some members of society are denied participation as full partners in life. In so doing, intersectionality contributes to the understanding that the redressing of inequities in mental health requires multi-factoral and multi-level strategies along the lines of (re)distribution, recognition, and parity of participation. For example, by drawing an analytical distinction between identities of individuals or social groups, and categories of difference (Dhamoon & Hankivsky, 2011), intersectional models offer researchers a useful lens

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through which to analyse the intersecting dynamics that exist between ­aspects of social difference (for example, mental illness, gender) and identity (for example, being a woman with a psychiatric history) within the broader context of structural oppression (for example, sanism, genderism, and the dominance of biopsychiatry). Foregrounding traditionally marginalized voices, such situated analyses can be directly applied to critiques of power (for example, Western Eurocentric perspectives as universal centre) and generate knowledge that adds important texturing to our understanding of the imbrications of subjective, structural, and social  levels of differentiation of cultural reproductions of inequities in mental health. Moreover, as Hancock (2007) notes, “recognition of interactions in multiple domains may reveal additional options for non-traditional coalition building among groups” (p. 74), which begs us to consider novel ways of operationalizing abstract notions of recognition and participation. A further distinguishing feature of intersectionality is that although intersectional theory emerges from critical theory and deconstructionist tradition, as a normative and empirical paradigm, “it does not remain there” (Hancock, 2007, p. 74). Ontologically speaking, intersectionality is positioned “between reductionist research that blindly seeks only the generalizable, and particularized research so specialized that it cannot contribute to theory” (Hancock, 2007, p. 74). It thus supports a moderate realism that underpins Fraser’s three-dimensional theory of social justice as critical and relational and that derives from the subjective notion of “lived experience” as a legitimate form of knowing, at the same time as it acknowledges the validity of some realist epistemological positions. According to Thorne and Varcoe (1998), such an epistemological position “balances absolute claims in the postmodern context and a respect for individual subjective reality that balances ideological primacy within critical social theory” (p. 491). In other words, within the larger project of generating knowledge for promoting equity and social justice, we can neither ignore the insights that can be drawn from inquiry into the construction of subjective truths (intersubjective condition) nor disregard the potential for quantitative or empirical science (objective condition) (Fraser & Honneth, 2003b). For example, while the insights from epidemiological research regarding the conducive role of income supports and employment participation by people with psychiatric disabilities for mental health recovery are generalizable across certain contexts and populations, we require specific knowledge that has been contextualized in local frames of meaning in order to

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understand issues of access to these types of services; the political, economic, and social conditions shaping their distribution; and their use and effectiveness for promoting mental health and well-being. Operating in this way, intersectional researchers can take on a role similar to that referred to by Denzin and Lincoln (2011) as the “researcher-asbricoleur” (p. 4). Taken up by Kincheloe, McLaren, and Steinberg (2011), the notion of bricolage refers to the process of engaging in a “dialectic of disciplinarity” by bringing together diverse schools of thought and an appreciation of the research context and nature of the social problem under investigation (p. 170). On this account, tensions between different schools of thought are neither conceptually reduced to methodological issues nor bound to lead to what has been traditionally labelled a “paradigm war.” Instead, in search for new, action-oriented knowledge for creating a more just and equitable society, the bricoleur views “incongruities between such cultural modes of inquiry … [as] quite valuable, for within the tensions of difference rest insights” (Kincheloe et al., 2011, p. 169). Researchers thus minded must eclectically choose and even construct their methods and methodologies by employing “a deep interdisciplinarity” (Kincheloe et al., 2011). Drawing on Homi Bhabha’s notion of the “Third Space,” research done from within such a discursive space “opens up the possibility of articulating different, even incommensurable cultural practices and priorities” (Bhabha as cited in Rutherford, 1990, p. 211) by directing attention to the ways in which different epistemologies and ontologies can intersect productively when normative judgment or interpretation is guided by a critical, relational reading of social justice along the lines of redistribution, recognition, and parity of participation. Conclusion Conscious consideration of the theoretical material presented here is a foundation for advancing a critical scholarship on mental health inequities and a critical dialogue about the meaning of the concept of social justice and the ways in which it can or should be applied in research, policy, and practice. For example, in raising a set of morally significant questions regarding the what, how, and who of social justice, Fraser’s three-dimensional conception of social justice offers a critical interpretative and reflexive lens that highlights the need for ethical and political responsibility. Such responsibility starts with – but does not end with – turning the gaze of researchers and policymakers inward to explicitly consider such questions as: How well do our current research practices, frameworks, and interventions

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fit with the values of a relational conception of social justice and equity, or are they at odds with them, given the current socio-political environment? What kind of knowledge is needed to effectively address the intersecting political, economic, and cultural spheres of inequities? Which dimensions and whose social justice claims are under-examined in the analysis, why, and to what effect? Inherently dialogical, such judgments are aimed at disrupting the grammar of hegemonic ethical frameworks; they involve weighing the relative merits of alternative interpretations of the what, the who, and the how of social justice by bringing into the open the contested nature of these concepts, and rendering explicit the power disparities in which they are embedded (Fraser, 2009). Intersectionality as a burgeoning research paradigm is pertinent to operationalizing critical relational conceptions of social justice and to mobilizing ethical response and counter-politics directed at advancing social justice in mental health. Yet, intersectionality is not a methodological or political panacea (May, 2015). Rather, recognizing the irreducibility of multiple knowledges, and their internal relations to normative reflection, will require that any outcomes of such dialogue be looked at as provisional, without expectation of final closure.

NOTES 1 I use the notion of mental health to refer to a wide range of experiences, including mental illnesses, trauma, substance abuse and addictions, suicide, and violence. 2 Colonialism here refers to the historical, socio-political, and economic processes and practices that are constituted by and are constitutive of colonial systems of oppression and domination (Browne, Smye, & Varcoe, 2005). 3 Structural violence describes the systematic ways in which structural arrangements exert violence and harm individuals and populations (Farmer, Nizeye, Stulac, & Keshavjee, 2006). REFERENCES Anderson, J.M. (2004, December). Lessons from a postcolonial-feminist perspective: Suffering and a path to healing. Nursing Inquiry, 11(4), 238–46. Medline: 15601412 http://dx.doi.org/10.1111/j.1440-1800.2004.00231.x Archer, M.S. (1995). Realist social theory: The morphogenetic approach. Cambridge: Cambridge University Press. http://dx.doi.org/10.1017/CBO9780511557675

A “Third Space” for Doing Social Justice Research  81 Beauchamp, T.L., & Childress, J.F. (2001). Principles of biomedical ethics. New York: Oxford University Press. Braveman, P. (2014, January–February). What are health disparities and health equity? We need to be clear. Public Health Reports, 129(Suppl 2), 5–8. Medline: 24385658 Brock, D.W. (2000, March). Broadening the bioethics agenda. Kennedy Institute of Ethics Journal, 10(1), 21–38. Medline:11658153 Browne, A.J., Smye, V.L., & Varcoe, C. (2005, December). The relevance of postcolonial theoretical perspectives to research in Aboriginal health. Canadian Journal of Nursing Research, 37(4), 16–37. Medline:16541817 Browne, A., Varcoe, C., & Fridkin, A. (2011). Addressing trauma, violence and pain: Research on health services for women at the intersections of history and economics. In O. Hankivsky (Ed.), Health inequities in Canada: Intersectional frameworks and practices (pp. 295–311). Vancouver: UBC Press. Clark, N. (2012). Perseverance, determination and resistance: An Indigenous intersectional-based policy analysis of violence in the lives of Indigenous girls. In O. Hankivsky (Ed.), An intersectionality-based policy analysis framework (pp. 133– 58). Vancouver: Institute for Intersectionality Research and Policy (IIRP). Collins, P.H. (2004). Black sexual politics: African American, gender and the new racism. New York: Routledge. http://dx.doi.org/10.4324/9780203309506 Daniels, N. (2006, July–August). Equity and population health: Toward a broader bioethics agenda. Hastings Center Report, 36(4), 22–35. Medline:16898358 http://dx.doi.org/10.1353/hcr.2006.0058 Deneulin, S., & McGregor, J.A. (2010). The capability approach and the politics of a social conception of wellbeing. European Journal of Social Theory, 13(4), 501–19. http://dx.doi.org/10.1177/1368431010382762 Denzin, N.K., & Lincoln, Y.S. (2011). Introduction: The discipline and practice of qualitative research. In N.K. Denzin & Y.S. Lincoln (Eds.), The SAGE handbook of qualitative research (pp. 1–20). Thousand Oaks, CA: Sage. Dhamoon, R.K., & Hankivsky, O. (2011). Why the theory and practice of intersectionality matter to health research and policy. In O. Hankivsky (Ed.), Health inequities in Canada: Intersectional frameworks and practices (pp. 16–50). Vancouver: UBC Press. Diamond, S. (2013). What makes us a community? Reflections on building solidarity in anti-sanist praxis. In B.A. LeFrançois, R.J. Menzies, & G. Reaume (Eds.), Mad matters: A critical reader in Canadian Mad studies (pp. 64–78). Toronto: Canadian Scholars Press. Farmer, P.E., Nizeye, B., Stulac, S., & Keshavjee, S. (2006, October). Structural violence and clinical medicine. PLoS Medicine, 3(10), 1686–91. Medline: 17076568 http://dx.doi.org/10.1371/journal.pmed.0030449

82  Viviane Josewski Foucault, M. (2000). The politics of health in the eighteenth century. In J.D. Faubion (Ed.), Power (R. Hurley and Others, Trans.) (pp. 90–105). New York: New Press. (Original work published 1976). Fraser, N. (2003). Social justice in the age of identity politics: Redistribution, recognition, and participation. In N. Fraser & A. Honneth (Eds.), Redistribution or recognition? A political-philosophical exchange (pp. 7–88). London: Verso. Fraser, N. (2009). Scales of justice: Re-imagining political space in a globalizing world. New York: Columbia University Press. Fraser, N., & Honneth, A. (2003a). Introduction: Redistribution or recognition? In N. Fraser & A. Honneth (Eds.), Redistribution or recognition? A politicalphilosophical exchange (pp. 1–5). London: Verso. Fraser, N., & Honneth, A. (2003b). Redistribution or recognition? A politicalphilosophical exchange. London: Verso. Freeman, S. (2001). Illiberal libertarians: Why libertarianism is not a liberal view. Philosophy & Public Affairs, 30(2), 105–51. http://dx.doi.org/10.1111/j.10884963.2001.00105.x Gewirtz, S. (1998). Conceptualizing social justice in education: Mapping the territory. Journal of Education Policy, 13(4), 469–84. http://dx.doi.org/10.1080/ 0268093980130402. Graham, H. (2004). Social determinants and their unequal distribution: Clarifying policy understandings. Milbank Quarterly, 82(1), 101–24. Medline:15016245 http://dx.doi.org/10.1111/j.0887-378X.2004.00303.x Hancock, A.M. (2007). When multiplication doesn’t equal quick addition: Examining intersectionality as a research paradigm. Perspectives on Politics, 5(01), 63–79. http://dx.doi.org/10.1017/S1537592707070065 Hankivsky, O. (2004). Social policy and the ethic of care. Vancouver: UBC Press. Hankivsky, O. (Ed.). (2011). Health inequities in Canada: Intersectional frameworks and practices. Vancouver: UBC Press. Hankivsky, O., De Leeuw, S., Lee, J., Vissandjee, B., & Khanlou, N. (2011). Introduction: Purpose, overview, and contribution. In O. Hankivsky (Ed.), Health inequities in Canada: Intersectional frameworks and practices (pp. 1–15). Vancouver: UBC Press. Hankivsky, O., Grace, D., Hunting, G., & Ferlatte, O. (2012). Introduction: Why intersectionality matters for health equity and policy analysis. In O. Hankivsky (Ed.), An intersectionality-based policy analysis framework (pp. 7–30). Vancouver: Institute for Intersectionality Research and Policy (IIRP). hooks, b. (1989). Talking back. Boston: South End Press. Hopper, K. (2012). Reframing early psychiatric crises: A capabilities-informed approach. Journal of Human Development, Disability, and Social Change, 20(2), 23–39.

A “Third Space” for Doing Social Justice Research  83 Ibell, B.M. (2004). An analysis of mental health care in Australia from a social justice and human rights perspective, with special reference to the influences of England and the United States of America: 1800–2004 (Unpublished doctoral dissertation). Melbourne: Australian Catholic University. Retrieved from http://cert3comcoonara2014.coonarahouse.com.au/file/view/an+analysis+ of+mental+health+care+in+Australia.pdf Ingram, R., Wasik, A., Cormier, R., & Morrow, M. (2013). Social inequities and mental health: A scoping review. Vancouver: Centre for the Study of Gender, Social Inequities and Mental Health. Retrieved from http://www .socialinequities.ca/knowledge/ Josewski, V. (2012). Analysing “cultural safety” in mental health policy reform: Lessons from British Columbia, Canada. Critical Public Health, 22(2), 223–34. http://dx.doi.org/10.1080/09581596.2011.616878 Kincheloe, J.L., McLaren, P., & Steinberg, S.R. (2011). Critical pedagogy and qualitative research: Moving to the bricolage. In N.K. Denzin & Y.S. Lincoln (Eds.), The SAGE handbook of qualitative research (pp. 163–77). Thousand Oaks, CA: Sage. Kirkham, S.R., & Browne, A.J. (2006). Toward a critical theoretical interpretation of social justice discourses in nursing. Advances in Nursing Science, 29(4), 324–39. Koggel, C.M. (2012). A relational approach to equality: New developments and applications. In J. Downie & J.J. Llewellyn (Eds.), Being relational: Reflections on relational theory and health law and policy (pp. 89–108). Vancouver: UBC Press. Larner, W. (2000). Neo-liberalism: Policy, ideology, governmentality. Studies in Political Economy, 63(1), 5–25. http://dx.doi.org/10.1080/19187033.2000.11675231 LeFrançois, B.A., Menzies, R.J., & Reaume, G. (Eds.). (2013). Mad matters: A critical reader in Canadian Mad studies. Toronto: Canadian Scholars Press. Liegghio, M. (2013). A denial of being: Psychiatrization as epistemic violence. In B.A. LeFrançois, R.J. Menzies, & G. Reaume (Eds.), Mad matters: A critical reader in Canadian Mad studies (pp. 122–9). Toronto: Canadian Scholars Press. Llewellyn, J.J., & Downie, J. (2012). Introduction. In J. Downie & J.J. Llewellyn (Eds.), Being relational: Reflections on relational theory and health law and policy (pp. 1–10). Vancouver: UBC Press. Macfarlane, E. (2013, April–May). Positive rights: It’s time our government take ownership over how rights are protected. National. Retrieved from http://www .nationalmagazine.ca/Articles/April_-_May_2013/Positive_rights.aspx May, V.M. (2015). Pursuing intersectionality, unsettling dominant imaginaries. New York: Taylor & Francis. Minkler, L. (2008). Integrity and agreement: Economics when principles also matter. Ann Arbor: University of Michigan Press. http://dx.doi.org/10.3998/ mpub.222273

84  Viviane Josewski Morris, J. (2001). Impairment and disability: Constructing an ethics of care that promotes human rights. Hypatia, 16(4), 1–16. http://dx.doi.org/10.1111/j.15272001.2001.tb00750.x Morrow, M., Wasik, A., Cohen, M., & Perry, K.-M.E. (2009). Removing barriers to work: Building economic security for people with psychiatric disabilities. Critical Social Policy, 29(4), 655–76. http://dx.doi.org/10.1177/0261018309341904 Nedelsky, J. (2012). The reciprocal relation of judgment and autonomy: Walking in another’s shoes and which shoes to walk in. In J. Downie & J.J. Llewellyn (Eds.), Being relational: Reflections on relational theory and health law and policy (pp. 35–62). Vancouver: UBC Press. Oliver, M. (1990). The politics of disablement: Critical texts in social work and the welfare state. London: Macmillan. http://dx.doi.org/10.1007/978-1-349-20895-1 Palmer, T.G. (2009). Realizing freedom: Libertarian theory, history, and practice. Washington, DC: Cato Institute. Pauly, B.B. (2008, June). Shifting moral values to enhance access to health care: Harm reduction as a context for ethical nursing practice. International Journal on Drug Policy, 19(3), 195–204. Medline:18467086 http://dx.doi.org/10.1016 /j.drugpo.2008.02.009 Perlin, M. (2003). “You have discussed Lepers and Crooks”: Sanism in clinical teaching. Clinical Law Review, 9(2), 683–730. Perlin, M.L. (2000). The hidden prejudice: Mental disability on trial. Washington, DC: American Psychological Association. http://dx.doi.org/10.1037/10379-000 Peter, F. (2001). Health equity and social justice. Journal of Applied Philosophy, 18(2), 159–70. Medline:11785544 http://dx.doi.org/10.1111/1468-5930.00183 Peter, F., & Evans, T. (2001). Ethical dimensions of health equity. In T. Evans, M. Whitehead, F. Diderichsen, A. Bhuiya, & M. Wirth (Eds.), Challenging inequities in health: From ethics to action. Toronto: Oxford University Press. http://dx.doi.org/10.1093/acprof:oso/9780195137408.003.0003 Raphael, D. (2006). Social determinants of health: Present status, unanswered questions, and future directions. International Journal of Health Services, 36(4), 651–77. Medline:17175840 http://dx.doi.org/10.2190/3MW4-1EK3-DGRQ -2CRF Rawls, J. (1971). A theory of justice. Cambridge, MA: Harvard University Press. Robeyns, I. (2003). Is Nancy Fraser’s critique of theories of distributive justice justified? Constellations (Oxford, England), 10(4), 538–54. http://dx.doi.org /10.1046/j.1351-0487.2003.00352.x Rossiter, K., & Morrow, M. (2011). Intersectional frameworks in mental health: Moving from theory to practice. In O. Hankivsky (Ed.), Health inequities in Canada: Intersectional frameworks and practices (pp. 312–30). Vancouver: UBC Press.

A “Third Space” for Doing Social Justice Research  85 Ruger, J.P. (2010). Health and social justice. Oxford: Oxford University Press. Rutherford, J. (1990). The third space: Interview with Homi Bhabha. In J. Rutherford (Ed.) Identity, community, culture, difference (pp. 207–21). London: Lawrence & Wishart. Sen, A. (1999). The possibility of social choice. American Economic Review, 89(3), 349–78. http://dx.doi.org/10.1257/aer.89.3.349 Sherwin, S. (2002). The importance of ontology for feminist policy-making in the realm of reproductive technology. Canadian Journal of Philosophy, 32(sup1), 273–95. http://dx.doi.org/10.1080/00455091.2002.10717590 Sherwin, S. (2012). Relational autonomy and global threats. In J. Downie & J.J. Llewellyn (Eds.), Being relational: Reflections on relational theory and health law and policy (pp. 13–34). Vancouver: UBC Press. Shildrick, M. (2003). Relative responsibilities. Women, a Cultural Review, 14(2), 182–94. http://dx.doi.org/10.1080/09574040310104 Silvers, A. (2001, Summer). A neutral ethical framework for understanding the role of disability in the life cycle. American Journal of Bioethics, 1(3), 57–8. Medline:11954602 http://dx.doi.org/10.1162/152651601750418125 Smith, B.T., Smith, P.M., Harper, S., Manuel, D.G., & Mustard, C.A. (2014, April). Reducing social inequalities in health: The role of simulation modelling in chronic disease epidemiology to evaluate the impact of population health interventions. Journal of Epidemiology and Community Health, 68(4), 384–9. Medline:24363409 http://dx.doi.org/10.1136/jech-2013-202756 Smith, L.T. (1999). Decolonizing methodologies: Research and Indigenous peoples. London and New York: Zed Books. Smye, V. (2004). The nature of the tension and disjunctures between Aboriginal understandings of and responses to mental health and illness and the current mental health system (Unpublished doctoral dissertation). University of British Columbia, School of Nursing. Smye, V., Browne, A.J., Varcoe, C., & Josewski, V. (2011, June 30). Harm reduction, methadone maintenance treatment and the root causes of health and social inequities: An intersectional lens in the Canadian context. Harm Reduction Journal, 8(17), 1–12. Medline:21718531 http://dx.doi.org/10.1186/1477-7517-8-17 Tam, L. (2013). Whither Indigenizing the Mad movement? Theorizing the social relations of race and madness through conviviality. In B.A. LeFrançois, R.J. Menzies, & G. Reaume (Eds.), Mad matters: A critical reader in Canadian Mad studies (pp. 281–97). Toronto: Canadian Scholars Press. Tarantola, D. (2007). The interface of mental health and human rights in Indigenous peoples: Triple jeopardy and triple opportunity. Australasian Psychiatry, 15(s1 Suppl 1), S10–S17. Medline:18027129 http://dx.doi.org/10.1080 /10398560701701130

86  Viviane Josewski Thorne, S., & Varcoe, C. (1998, November–December). The tyranny of feminist methodology in women’s health research. Health Care for Women International, 19(6), 481–93. Medline:9849194 http://dx.doi.org/10.1080/073993398246052 Van Niekerk, A.A. (2005). Principles of global distributive justice and the HIV/ AIDS pandemic: Moving beyond Rawls and Buchanan. In A.A. Van Niekerk & L.M. Kopelman (Eds.), Ethics and AIDS in Africa: The challenge to our thinking (pp. 84–110). Claremont, South Africa: David Philip Publishers. Varcoe, C., Pauly, B., & Laliberte, S. (2011). Intersectionality, justice and influencing policy. In O. Hankivsky (Ed.), Health inequities in Canada: Intersectional frameworks and practices (pp. 331–48). Vancouver: UBC Press. Venkatapuram, S., & Marmot, M. (2009, February). Epidemiology and social justice in light of social determinants of health research. Bioethics, 23(2), 79–89. Medline:19531161 http://dx.doi.org/10.1111/j.1467-8519.2008.00714.x Whitehead, M., & Dahlgren, G. (2006). Concepts and principles for tackling social inequities in health: Levelling up Part 1. Copenhagen: World Health Organization Europe. Wildeman, S. (2012). Insights revisited: Relationality and psychiatric treatment decision-making capacity. In J. Downie & J.J. Llewellyn (Eds.), Being relational: Reflections on relational theory and health law and policy (pp. 255–86). Vancouver: UBC Press. Wodak, A. (2007). Ethics and drug policy. Psychiatry, 6(2), 59–62. http://dx.doi .org/10.1016/j.mppsy.2007.01.001 World Health Organization (WHO). (2008). Closing the gap in a generation: Health equity through action on the social determinants of health. Final Report of the Commission on Social Determinants of Health. Geneva: Author. World Health Organization (WHO). (2013). Closing the health equity gap: Policy options and opportunities for action. Geneva: Author. Young, I.M. (2001). Equality of whom? Social groups and judgments of injustice. Journal of Political Philosophy, 9(1), 1–18. http://dx.doi.org/10.1111/1467 -9760.00115 Young, I.M. (2006). Responsibility and global justice: A social connection model. Social Philosophy & Policy, 23(01), 102–30. http://dx.doi.org/10.1017 /S0265052506060043 Young, I.M. (2011). Justice and the politics of difference (2nd ed.). Princeton, NJ: Princeton University Press.

3 Global Psychiatrization and Psychic Colonization: The Coloniality of Global Mental Health china mills

Introduction This chapter takes as its point of departure the multiple and strange entanglements between psychiatry and colonialism. In many different parts of the world, at different times, psychiatry and colonialism have been entangled and intertwined. The work in this chapter emerges from the uncomfortable question of whether psychiatry (and the “psy-” disciplines) can be both a tool and a form of colonialism. I explore the role that psychiatry has played in colonialism and that colonialism has played in psychiatry. While it may be important to retain distinctions between colonization (in its many forms) and psychiatrization, it may be informative (particularly when thinking about resistance) to explore the similarities between these projects. First, I trace the role that psychiatrization has played in some forms of colonial governance and specifically in its reconfiguration of resistance to colonialism as individual pathology or madness, foreclosing a structural analysis of dissent. Second, I explore the ways in which this rewriting of resistance and distress continues today through global psychiatrization, which, by telling a single universalizing story about suffering as individual pathology and about distress as “mental illness,” erases a multitude of alternative ways of understanding distress in diverse contexts. I explore whether a central tenet that colonialism and psychiatry have in common is the destruction and erasure of alternative ways of knowing, being, and doing – what is known differently in different literatures as cognitive injustice (Santos, 2012), cognitive enslavement (Dhareshwar, 2010), and the colonization of the mind (Nandy, 1983). Told through the lens of two famous letters of resignation (from different continents and different decades), the writing in this chapter hinges on

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two current realities in India – the discrediting and demonization of traditional forms of healing, and the high numbers of suicides by farmers – to try and glimpse the psychiatrization at work within colonialism and the coloniality of (global) psychiatrization. Colonization and Psychiatrization Before exploring the entanglements of global psychiatrization and colonialism, we need to unpack and unpick some terms. Colonialism is generally understood to be the “conquest and control of other people’s land and goods” (Loomba, 1998/2009, p. 8), constituting a form of cultural exploitation specifically linked to the expansion of Europe over the last four hundred years. Colonialism comes in different forms across time and place, often underscored by distinct yet not unrelated logics of the creation of dependency through the reform of the “natives,” and a genocidal logic of erasure of Indigenous peoples and worldviews. It involves the subjection of colonized peoples, a process constructed as natural, where Indigenous peoples are cast as “genetically predetermined to inferiority” (Ashcroft, Griffiths, & Tiffin, 2000, p. 41). Thus, colonialism involves more than the extraction of goods from colonized lands; it is an encounter embedded within relations of domination and exploitation; and it exports technologies and worldviews, restructures economies, and draws them into relationships of dependency that create markets for European goods (Loomba, 1998/2009). Often domination continues even after formal colonial administrations have ended, meaning that colonialism survives the “demise of empires” (Nandy, 1983, p.  xi), thus pointing to an important distinction between colonialism and global coloniality – which continues, sometimes invisibly, in the current “modern/colonial capitalist/patriarchal world system” (Grosfoguel, 2010, p. 73; Grech, 2011). While psychiatry served as a tool for many colonial administrations, it is perhaps coloniality that is most relevant to global psychiatrization. Psychiatry was one of the technologies exported to colonized lands and is a colonial legacy in many parts of the global South (Fernando, 2010). It became a key agent of colonialism and a tool of empire by legitimizing colonial oppression in the name of scientific progress (Ernst, 1997). Thus, psychiatric asylums constructed as “citadels of European progress” were an important part of the civilizing mission of colonialism (Ernst, 1997, p. 172). While psychiatry formed a key tool of the colonial project, the colonies were also central to the development of psychiatry, with the discovery that the natives – previously thought too uncivilized to experience madness

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– could also develop mental illness, thus allowing the development of a universalizing biological language of psychiatry (Jilek, 1995). This universalization, pathologization, and biologization of distress has enabled a global psychiatrization, whereby more and more of our lives come to be seen, globally, as concerns for psychiatry (Mills, 2014a; Rose, 2006). This global psychiatrization is currently being promoted by diverse and powerful agents, including the World Health Organization (WHO, 2013), and the Movement for Global Mental Health (Patel, Boyce, Collins, Saxena, & Horton, 2011). (For a detailed discussion of the role played by these actors in the construction of mental health as a global priority, see Fernando, 2014, and Mills, 2014a.) Psychic Colonization That psychiatrization and colonization are so intricately and historically entangled suggests a need to retain their conceptual separation in order to explore their continuing relationship today. However, if psychiatry was, and is, a key agent of colonialism, then can psychiatry itself be colonizing or, specifically, a form of continued coloniality? More than material domination, colonialism is also a system of representation that generates images of the West as superior. This system extends the reach of colonialism into people’s heads (Smith, 1999). Thus, by framing the psychological limits of resistance, by altering cultural priorities, and by inducing colonized peoples to accept new cognitive categories, the West as a concept changes from being a geographical location to being a psychological category – “the West is now everywhere, within the West and outside; in structures and in minds” (Nandy, 1983, p. xi). Here the more formal colonization of land makes possible specific forms of psychic life – what we might call the “psychic life of colonial power” (Butler, 1997; Hook, 2012, p. 18) or “the psychological contours of colonialism” (Nandy, 1983, p. 2). This form of psychic life is dehumanizing and objectifying because the colonized are cast either as instruments of production, even as the colonizer imposes onto them Western accounts of subject formation, or as non-persons that need to be erased (Loomba, 1998/2009). In this way it is possible for colonized peoples to come to understand themselves in foreign terms, meaning that “colonialism colonises minds in addition to bodies” (Nandy, 1983, p. xi; Thiong’o, 1981). Colonization may also circumscribe and shape the contours of resistance to colonialism and psychiatry. Therefore, the move to rethink global psychiatrization within this chapter does not have to be anti-psychiatry

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– just as resistance to colonialism, according to Nandy (1983), was sometimes more powerful when it was not burdened by a desire to be perfectly non-Western. Bearing this in mind, this chapter seeks to acknowledge that Western psychiatry is not monolithic, it comes in various diverse forms (from the biopsychiatry mainly discussed here to transcultural and critical psychiatries), and it is itself a local system of knowledge – one of many ethno-psychiatries (Gaines, 1992, p.  3; Summerfield, 2008) – embedded within the history of a particular culture and inevitably threaded throughout with assumptions that are ableist, classed, gendered, and racialized. Yet, psychiatry, like modern science and the current neoliberal capitalist system, is a “globalised localism” (Santos, Nunes, & Meneses, 2007, p. xxxix) that is seen outside of the West as a form of “Western particularism whose specificity consists of holding the power to define as particular, local, contextual, and situational all knowledges that are its rivals” (Santos et al., 2007, p. xxxv). To recognize this is not to completely reject biomedical psychiatry; it enables an understanding that “we might employ biomedicine as a partial frame, useful at times, but incomplete and inadequate for much of what we want to accomplish” (McGruder, 2001, p. 77). A key reason for tracing the entanglements of psychiatry and colonialism is to come to know them differently, a form of resistance enacted against the “cognitive injustice” (Santos, 2014) that is made possible through the dominance of any one approach to understanding distress or well-being that claims to be universal – an approach that is currently dominated by the “psy-” disciplines and particularly biopsychiatry. A Stranger, an Alien, a Resignation Let us now turn to two letters of resignation, which provide our lens for this chapter. In 1956 Frantz Fanon, an anti-colonial revolutionary and a psychiatrist from colonial Martinique, resigned from his post at a psychiatric hospital in colonial Algeria. His resignation letter stated that “if psychiatry is the medical technique that aims to enable man to no longer be a stranger to his environment, I owe it to myself to affirm that the Arab, permanently an alien in his own country, lives in a state of absolute depersonalization” (Fanon, 1967/1986, as cited in Bulhan, 1985, p. 249). For Fanon (1967/1986), psychiatry as a therapeutic means of restoring those alienated from their environments was impossible in the colonial situation. Fanon (1963) gives the example of how, during colonization, “the lay-out of the cerebral structures of the North African” were seen as

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responsible for their supposed laziness, inaptitude, and impulsivity, meaning that such acts came to be read as “biologically organised” (p. 245). Specifically, a central way in which psychiatrization has functioned alongside colonial projects has been to pacify resistance (and naturalize oppression) through reconfiguring dissent and distress as mental illness. The dominant evolutionary explanations of colonialism and madness drew comparisons between primitivity and psychopathology, comparing “psychotic patients” with “primitive people” and framing social and racially coded hierarchies as biological (Heinz, 1998). For example, in British colonized East Africa, to imagine a future free of the colonizers was framed as a fantasy – a symptom of illness. This reconfiguration of distress is a thing not only of the colonial past; it continues today under settler colonialism and occupation, as Shalhoub-Kevorkian (2014) documents in Palestine: “Palestinian suffering has been apoliticized, individualized, and psychologized. This shift toward individual, psychological pain masks its collective underpinning, which is promoted by a racial logic of elimination and dispossession” (p. 2). In this way, those who resist (historically and today) are psychologized and psychiatrized – meaning that analyses of oppressive social conditions were and are overshadowed by concern with the psychology of the “natives” (Mahone, 2006; Vaughan, 1993). Thus, disease was and is used as both metaphor and condition (Marks, 1997), for “illness is a powerful political metaphor, and the abusive use of terms like ‘mad’ or ‘retarded’ is a common way of discrediting individuals or societies to whom we are opposed” (Littlewood, 1993, p. 257). So it might be that the common goal shared by colonialism and psychiatry was and is the (re)articulation and (re)location of outside structures to being inside people, and so, in this logic, colonial hierarchies are genetic; poverty is a problem of mentality (Mills, 2015); and criminality, rebellion, and resistance are located in psyches and brains. While it is possible to trace how psychiatry was used as a colonial tool, a different question arises as to whether psychiatry can itself colonize, just as “medicine served as an instrument of empire, as well as an imperializing cultural force in itself ” (MacLeod & Lewis, 1988, p. x). Some critiques of psychiatry and of global psychiatrization are rooted in the idea of psychiatry itself as a form of colonialism or imperialism, or as a colonial discourse (Mills, 2014a; Summerfield, 2008). Psychiatry could be said to colonize in numerous ways. It may colonize through translation: translating local ways of speaking distress into psychiatric categories, from local languages to the tongues of the colonizers (Addlakha, 2008). Psychiatry may colonize

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through labelling and diagnosing experiences that may be personally and politically meaningful as symptoms of a mental illness in need of treatment and by attributing distress as within brains and not due to societal and geopolitical structures. Further, psychiatry’s coloniality may also lie in developing markets for “psy-” expertise and psychotropic medications in the global South. Fanon (1963) makes clear, then, that instead of depoliticizing resistance – for example labelling it as “laziness” and claiming that it is caused by faulty brains – it is possible to read such acts as symbols of defiance, where laziness is “the direct product of the colonial situation” (p. 250) and marks “the conscious sabotage of the colonial machine” by the colonized (p. 239). Through the lens of Fanon’s writing, what psychiatry calls mental illnesses might be read as products of social inequality or alienation. Fanon’s insight is that distress and resistance are cast as biological by the colonizer, who calls upon many types of medicine, including psychiatry, to strategically locate resistance in pathological cerebral structures. Fifty years later we might extend this insight: today the biopsychiatry that underlies much of global psychiatrization may itself be understood as a form of coloniality, as it also locates distress and arguably resistance within faulty brain chemicals. “Molecule Conglomerates” For some authors, it is the pharmaceutical industry that uses psychiatry as a tool of colonization: psychiatry provides the networks for the pharmaceutical “industry to colonize more and more areas of modern life in order to expand the market for psychotropic drugs” (Moncrieff, 2007, p. 192). The concern that the pharmaceutical industry uses psychiatry to locate problems in brains and not in contexts led to another resignation letter, thirty years after Fanon’s, on a different continent. On 4 December 1998, Loren Mosher, a U.S. psychiatrist and member of the American Psychiatric Association for nearly three decades, resigned, saying: Psychiatry has been almost completely bought out by the drug companies ... Psychiatrists have become the minions of drug company promotions ... No longer do we seek to understand whole persons in their social contexts – rather we are there to realign our patients’ neurotransmitters ... keeping our distance from the molecule conglomerates we have come to define as patients. We condone and promote the widespread use and misuse of toxic chemicals that we know have serious long-term effects ... [it] is my belief I am actually resigning from the American Psychopharmacological Association.

Global Psychiatrization and Psychic Colonization  93 Luckily, the organization’s true identity requires no change in the acronym. (Mosher, 1998)

Constructing patients as “molecule conglomerates” could be read, through Fanon, as illustrating the way in which psychiatry, like colonialism, dehumanizes and objectifies – a process of “thingification” (Césaire, 1972, p. 21). If distress results from faulty brains, then the implication is that the solution to the problem is to intervene at the level of the brain, for example to act on neurochemistry through the use of psycho-­pharmaceuticals. Even as the long-term harmful effects of psychiatric drugs are being increasingly recognized in high-income countries of the global North (Breggin, 2008; Moncrieff, 2007), there is a simultaneous call to increase access to psycho-pharmaceuticals in the global South, for example by the World Health Organization (2013). Through the construction of mental illness as located within people’s brains, this kind of advocacy arguably enacts Mosher’s fears on a global scale, reconfiguring populations of the global South as potentially flawed “molecule conglomerates,” as faulty things that need fixing by psychiatry. However, here we need to be cautious because we are entering a quagmire of multiple colonialisms, where psychiatry colonizes minds and the pharmaceutical industry colonizes psychiatry, and I am left wondering whether everything could be said to be colonial in some way or another. Critiques of psychiatry that mobilize colonialism do a number of things. Some make reference to the way in which psychiatry works as a site of colonial power through the pathologization and individualization of resistance and suffering; other critiques draw direct comparisons between colonialism and psychiatrization, where psychiatry is framed as either being like colonialism or being a form of colonialism. To speak of global psychiatrization as colonialism is to use colonialism as a metaphor. This is a move that the 2013 Mad People of Colour Manifesto warned us against: “White people’s experiences of psychiatry are not ‘like colonialism.’ Colonialism is like colonialism” (Gorman, saini, Tam, Udegbe, & Usar, 2013). Similarly, Fanon maintained that “the colonial environment is like no other,” that it is an unprecedented situation marked by extreme asymmetries of power (as cited in Hook, 2004, p. 11). Colonialism, in this argument, should not be used as a metaphor for other forms of oppression (for example, psychiatric oppression), because colonialism has specific meanings, which can be evaded if turned into metaphor (Tuck & Yang, 2012). Importantly, the claim that all who are psychiatrized are simultaneously colonized can marginalize the realities of those populations who have

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experienced both colonization and psychiatrization – whether in post-­ colonial contexts such as India or in settler colonies such as Canada or Palestine. Furthermore, these evasions constitute “settler moves to innocence” that “problematically attempt to reconcile settler guilt and complicity, and rescue settler futurity” (Tuck and Yang, 2012, p. 1). This analysis draws attention to the need to grapple with the “normalizing connections” between psychiatrization, colonialism, and multiple other “-isms” (LeFrançois, 2013, p. 108), particularly as these produce different effects among differently oppressed groups (Diamond, 2014). Thus, while it may be problematic to use colonialism as a metaphor to describe psychiatrization, it is relevant to trace how both colonialism and psychiatrization are deeply historically implicated and mutually reinforcing, while also tracing how psychiatrization may currently enact forms of global coloniality (even after formal colonialism has ended in some places) (Grosfoguel, 2010). Making Mental Health for All a Reality The Movement for Global Mental Health is an increasingly influential international network of individuals and organizations that, alongside the World Health Organization, aims “to make mental health for all a reality” (Patel, Collins et al., 2011, p. 90) by increasing “the coverage of services for mental disorders in all countries, but especially in low-income and middle-income countries” (Lancet Global Mental Health Group, 2007, p. 87). The “knowledge” produced by the Movement for Global Mental Health, or what it calls its “scientific evidence base” (Patel, Saraceno, & Kleinman, 2006, p. 1312), includes the points that distress is a “mental illness” and a “neuropsychiatric disorder” that is “chronic and very disabling” (Patel et al., 2007, p. 48). As a key proponent of the movement, the World Health Organization argues that distress has a “physical basis in the brain ... can affect everyone, everywhere [and] can be treated effectively” (WHO, 2001b, p. x). Thus it is in the above language that mental health is to be made a “reality” for all (Patel, Collins et al., 2011, p. 90), enabling mental illnesses to enter into the circuits of global capital alongside the drugs that claim to treat them. If, for Fanon, colonialism was alienating because it located the source of distress within brain structures; if, for Moncrieff (2007), the pharmaceutical industry colonizes everyday life through psychiatry; and if psychiatry has become redefined as psycho-pharmacology, as suggested by Mosher (1998), then we might wonder whose interests are shaping the agenda of Global Mental Health and its claims that mental illness is universal.

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Reconfiguring Agrarian Crisis as Mental Illness Fanon was a stark opponent of a colonial psychiatry that located distress in brain structures and overlooked the socio-historical-colonial context in which that distress arose. Employing Fanon’s socio-diagnostics, one cannot understand psychological problems or distress outside of the conditions of oppression that lead to them, nor can one overlook the power of the oppressor to re-articulate distress as pathology. In Fanon’s time, colonizers of the global South rewrote people’s resistance as faulty biology, and today we see some proponents of global psychiatrization rewriting and diagnosing the effects of socio-economic injustices as mental illness. This reconfiguration of economic crisis as mental illness is starkly evident in the high number of farmers who swallow pesticides to commit suicide in India. There have been over 200,000 farmer suicides in India since 1997 (Lerner, 2010), and there are estimates of 300,000 deaths a year in the Asia-Pacific region alone due to self-poisoning with pesticides (Patel et al., 2007). Many critics attribute the cause of this crisis to economic and agricultural reforms that have opened up cotton farming to the world market, making farmers dependent on purchased inputs and genetically modified seeds, and leading to an over-reliance on credit from private money lenders. This reliance on credit puts farmers in a precarious position, as they become particularly vulnerable to crop failure or to price fluctuation of crops in the world market (Perspectives, 2009). As a result, thousands of Indian farmers have resorted to suicide, swallowing the very pesticides that have in part led to the degradation of their land (Perspectives, 2009). Some farmers have made visible the political and economic role in their suicides, with “an increasing number of suicide notes today directly address[ing] the Prime Minister … taking the form of a public statement accusing the state of betrayal” (Perspectives, 2009, p. 2). Yet the Indian government has responded to farmer suicides by sending out teams of psychiatrists, making anti-depressants more widely available (Sharma, 2004), and launching a study that looks deep inside farmers for genetic factors linked to suicide (Arya, 2007). Similarly, Patel (2007) proposes specific medical and psychiatric solutions to the global problem of farmer suicides, including the reduction of access to pesticides, the improvement of medical care for pesticide poisoning, the improvement of treatment for depression, and the increased availability of anti-depressants. Thus, it would seem that by locating the source of distress within the brain or within genes, “psychiatry and epidemiology

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can be used as a tool to mute important issues that underlie social suffering” (Aggarwal, 2008, p. 27). Such an approach also fails to acknowledge fully the role of the wider agrarian crisis and the way in which this comes to be inscribed on bodies – for example, how volatile economic markets may lead to substance abuse or family conflict, which may then lead to suicide. The high number of farmer suicides signifies the need to understand distress within the context and reality of diverse forms of colonialism and to be always alert to the play of social dynamics and power relations in and on bodies – how bodies and minds bear the mark of colonial relations and how this becomes an embodied reality, or what Meekosha and Soldatic (2011) call a “global social embodiment” (p. 1390). It is this recognition of the embodied reality of all colonialism that is overlooked and foreclosed in the process of global psychiatrization. Thus, “as colonized societies around the world struggle to reclaim their histories and articulate the complexity of their political resistance against a tradition of intellectual power, Eurocentric narratives of suffering intervene, and rewrite some of these (selected) stories” (Shalhoub-Kevorkian, 2014, p. 3). These rewritings impose a single narrative of psychological suffering that individualizes, ahistoricizes, and apoliticizes pain and distress. Weeding Out Alternatives That psychiatry may be exported to the global South “by economic and political forces allied to western power” (such as the pharmaceutical industry) (Fernando, 2010, p. 113) has led to a major critique of the Movement for Global Mental Health: that it is colonial, a form of psychiatric imperialism. Here global mental health is seen as “a top-down, imperial project exporting Western illness categories and treatments that would ultimately replace diverse cultural environments for interpreting mental health” (Bemme & D’Souza, 2012). These concerns parallel those of Thomas et al. (2005), who see WHO global initiatives as rooted in neocolonial power relationships and as “medical imperialism, similar to the marginalization of indigenous knowledge systems in the colonial era” (Summerfield, 2008, p. 992). In fact, a key move in making mental health a global reality seems to lie in delegitimizing and removing alternative realities. This is evident in the development of the WHO’s Mental Health Gap Action Program (mhGAP) guidelines – specifically developed to aid treatment decisions in non-­specialized health care settings in low- and middle-income countries. According to advocates of the Movement for Global Mental Health, the guidelines are the route forward and “should become the standard approach for all countries

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and health sectors; irrational and inappropriate interventions should be discouraged and weeded out” (Patel, Boyce et al., 2011, p.  1442). Here the guidelines are not only constructed as preferable but put forward as a new standard by which alternative approaches should be judged (and ultimately replaced). This “weeding out” has historical roots in colonization. For example, towards the late nineteenth century in India, Western medicine began a “process of elbowing out the indigenous systems of medicine to help western medicine consolidate itself and thereby maintain its hegemony” (Poornima, 1995, pp. 36, 97). Western medicine, promoted as modern and rational, was set up against Indigenous healing systems, which “were condemned for their ‘irrationality’ and ‘superstition’” (Poornima, 1995, pp. 38–9), with asylums functioning as “symbolic strongholds of Western reason standing up against the maddening abyss of Eastern irrationality” (Ernst, 1997, p. 172). That the language of irrationality in reference to traditional and Indigenous healing persists today could be said to demonstrate the continuing links between coloniality and current efforts to increase psychiatry’s reach. In fact, this push to consolidate the hegemony of psychiatry continues in contemporary India, where psychiatrization has been taken up as a governmental project, with the Indian supreme court demanding that many traditional and spiritual healing sites (including dargahs) be shut down, that they display banners outside healing sites to tell people who are mentally distressed to go to the psychiatric hospital, and that, in some states, people be forcibly removed from healing sites and involuntarily admitted to state psychiatric facilities (Davar & Lohokare, 2009; Siddiqui, 2016). In one case the state took legal action against a dargah because it was seen as violating the Mental Health Act (1987). The Indian government demanded the handover of “mentally ill” “patients” from the dargah for psychiatric treatment (Davar & Lohokare, 2009). However, in a letter sent to the Indian government the healers stated that a dargah was not a mental hospital and there were no “patients” in it; thus the issue of handing over the patients to the medical authorities could not arise (Davar & Lohokare, 2009). This statement is of central importance. If there are no patients in a dargah, then might there be no mental illness in a dargah? Do dargahs function as spaces in which psychiatric diagnostic categories may not be an available identity, where being mentally ill is not a way of being a person? Exploring this example is not to romanticize traditional healing sites; it simply recognizes them as one potential site of resistance to Western biopsychiatry. This is in part because they constitute a space that psychiatry and the global North does not know, and thus they function as

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a site for knowing distress differently. However, with increasing emphasis on integrating some forms of traditional healing with psychiatry, including training healers to administer psychotropic medications, the potential for resistance may be under threat (Incayawar et al., 2009). To export psychiatry globally is to begin to reframe an enormous variety of expressions of personal and social distress into an illness model, treatable by drugs. That psychiatry is developed in a culture that is alien to much of the world, for Fernando (2010), marks a form of psychiatric imperialism that is “less obvious” than military domination because it is swallowed in the form of a pill, but it is “no less powerful and ... destructive to the vast majority of people in the world” (p. 115). This destructiveness is documented by Higginbotham and Marsella’s (1988) findings that in many South Asian cities psychiatric classification systems have begun to break with and discredit local understandings of distress, yet provide little to replace them. Furthermore, they appropriate many of the resources made available for mental health, leading to “deleterious … after-shocks” within cultural systems (Higginbotham & Marsella, 1988, p. 557). By focusing on the brain and on a “global norm for mental health,” the Movement for Global Mental Health overlooks the global complexity of lived experiences and alternative sources of support (Shukla et al., 2012, p. 292). The discrediting and, in India, the current demonization and attempts to prohibit traditional and Indigenous forms of healing (Davar, 2014) may be deleterious by the very fact that they reduce multiplicity in understandings of distress, even as pluralism has been identified by Halliburton (2004) as a factor in better outcomes for those who are distressed in India. For Santos (2014) the “failure to recognise the different ways of knowing by which people across the globe provide meaning to their existence” is a form of “cognitive injustice” (p. 111). This injustice is followed by attempts to destroy epistemological diversity through a monist framework – a single story – that claims to be universal: a form of epistemicide (Santos, 2014). This constitutes a colonization of the imaginary, of our capacities to imagine alternatives (Gruzinski, 1988, as cited in Rahnema & Bawtree, 1997). Both colonial discourse and psychiatric discourse permeate consciousness and operate to constitute the conditions through which people come to see themselves, ways that sometimes clash with alternative worldviews (Ashcroft, Griffiths, & Tiffin, 2000). Both discourses – through invoking civilizing missions and humanitarianism – conceal the often economic benefits to those in power that underlie (or advantageously, for some, coincide with) their interventions. They also conceal or claim to justify the dependencies they create, economically and pharmaceutically. Furthermore, both

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conceal, under the rubric of civilizing, the material, symbolic, and epistemological violence that they enact through a politics of reductionism that denies and attempts to erase alternative worldviews (Shiva, 1990). Indissoluble Ties For Dhareshwar (2010), “colonialism is destructive of the very integrity of experience. It is deep because it immediately brings up the question of what constitutes a form of life and what conditions are needed for its continued existence and flourishing” (p. 51). Psychiatry too can destroy or occlude experience, and it too is deep, because it constitutes what counts as a life worth living, while acting through chemicals on people’s brains. While colonization rarely destroys all creativity and resistance, for Gruzinski (1988) “it does succeed more than often in weaving indissoluble ties between indigenous cultures and the imported ones” (as cited in Rahnema & Bawtree, 1997, p.  169). Similarly, we might understand the globalization of psychiatry as weaving indissoluble ties between people labelled as mentally ill, and “psy-”expertise, and medication – ties that dissolve on tongues in the form of a pill, yet create dependencies that are socially and biologically hard to break. In this regard, we can recall Mosher’s (1998) resignation, because it rallied people against a psychiatry that reinforces a society dependent on drugs. Furthermore, this increasing dependence on (often addictive) psychiatric drugs (Timimi, 2002) is reminiscent of the dependencies created by more formal colonialism that sought to make colonized countries dependent on the exports of the colonizers. Thus through the creep of psychiatrization there comes into being “an international protectorate whose remit encompasses the supervision of the psychological state of the population [and] entails a far more extensive and intrusive foreign presence than past colonial administrations” (Pupavac, 2002). For Nandy (1998), “one of the most damaging legacies of colonialism,” and yet one that attracts little attention, is the “dominance of the cultural language in which dialogue among nonwestern cultures takes place. Even when we talk to our neighbours, it is mediated by western categories, western assumptions and western frameworks. We have learnt to talk to even our closest neighbours through the West” (p. 144). With many non-governmental organizations acting as distribution channels for psychiatric medication and knowledge (teaching local populations “mental health literacy”) in many countries of the global South, increasing numbers of people are coming to understand and encounter their neighbours and themselves through psychiatry.

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Mahatma Gandhi’s critique is useful here, for he does not (as cited in Dhareshwar, 2010) mobilize against modernity but tries to resist structures that occlude and to create structures that preserve the integrity of experience. Applying this to a critique of global psychiatrization as a form of psychic colonization or psychic coloniality, we might explore the possibilities of not rejecting outright all psychiatric or Western understandings of mental health, but attempt to identify how these may operate to occlude experience in both the global South and the global North. The imposition of these structures that occlude experience is, thus, an ethical issue. It poses for Summerfield (2008) an ethical challenge around the issue of consent because it could be argued that people cannot consent to treatments that are alien (and alienating) and irrelevant to their understanding of the world. Decolonizing Psychiatry So far we have explored the multiple entanglements of psychiatrization and colonialism: psychiatry’s role in colonial governance as a tool to psychologize resistance; and more contemporary forms of global psychiatrization as potentially enacting forms of coloniality. We have explored how psychiatry has been constituted through colonialism and so is always a colonial practice, and how psychiatry and colonialism (even when seemingly operating apart from one another) use similar tools, tools that constitute and are built upon the interlacing categories of madness and savagery or primitivity. Thus, “madness and savagery were/ are co-constituted through a confluence of ideas that rationalized forms of violence on bodies of difference deemed worthy of harm or exclusion. They serve together to shore up notions of civility and incivility; they do not now nor have they ever existed without one another” (Joseph, 2015, p. 1037). These categories and tools have been central for colonialism and psychiatry in their shared projects of the (re)articulation and (re)location of external structures to the internals of people’s bodies – the naturalization and biologization of colonial, racist, sexist, homophobic, and ableist hierarchies. However, while psychiatrization and colonialism may have at their heart the co-constituting analogies of madness and savagery, it is important not to equate decolonization with anti- or de-psychiatrization. It may also then (to rethink my own previous formulations, see Mills, 2014a) be impossible to de-psychiatrize colonialism or to decolonize psychiatrization.

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Within a Fanonian reading, colonialism is “a disease that distorts human relations and renders everyone within it ‘sick’” (Loomba, 1998/2009, p. 122). It makes people sick because colonialism is inherently alienating, and it makes people sick because it constructs their resistance as sickness, as pathology – psychiatrizing alternative worldviews and recoding them as mental illness. As described from the outset of this chapter, it is useful to consider that, in a parallel way, the current globalization of psychiatry also classifies and diagnoses increasing numbers of people as sick – as mentally ill. This naming is evident in the WHO’s framing of psychiatric disorders as a public health emergency, and in its estimations that over 450 million people worldwide are suffering from a “mental or brain disorder” at any given time (WHO, 2001a, p. 6). Thus, it would seem that Fanon’s argument is still relevant today and can assist us in studying the expansion of psychiatry at the global level. Yet Fanon may not have agreed with this reading of the similarities between colonialism and psychiatry as diseases that render those within them sick. While Fanon opposed psychiatry as a tool of colonialism, he did not seem to suggest that psychiatry itself is colonizing, and although he moved away from Algeria, he continued to practise psychiatry. Thus, while Fanon called for an end to colonialism, he did not call for an end to psychiatry. For Fanon it was possible to reconfigure psychiatry in non-colonial ways (contrasting with the above attention to psychiatry as always being colonial) and, more widely, to rethink global psychiatrization, because of his insistence on a historical grounding of theory – an opposite move to the universalizing tendencies of psychiatry. To Fanon, distress is “a pathology of liberty,” and thus psychiatric intervention has a political role in restoring liberty (as cited in Hook, 2004). Thus, Fanon pioneered a “psychiatry of liberation” embodied in his call for the establishment of day hospitalization in Tunisia (Bulhan, 1985, p. 232) and, in doing so, seemed to draw a parallel between liberty for the colonized and liberty for psychiatric patients. For this reason Bulhan (1985) rejects the popular idea that Fanon abandoned psychiatry for politics. Instead it was “his ability to connect psychiatry to politics or private troubles to social problems and, having made the connection conceptually, to boldly act that made him a pioneer of radical psychiatry and of psychopolitics” (p. 240). It is worth repeating that while Fanon was critical of the cultural and racist biases within psychiatry and its extension to North Africa, he was not calling for the abandonment of psychiatry. Thus, in Bulhan’s reading of Fanon, “the paramount tasks of psychology and psychiatry [should be]

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to unravel the relation of the psyche to the social structure, to rehabilitate the alienated, and to help transform social structures that thwart human needs” (1985, p. 195), and to transform individual pain into political action (Vaughan, 1993, p. 46). This is to imagine a different kind of psychiatry as well as multiple alternatives to psychiatry, that is, alternatives that do not see distress and those who experience it as “molecule conglomerates” (Mosher, 1998). Other ways of knowing distress can come from those who know it well – those who have experienced it first-hand. Multiple user and survivor-led initiatives and movements are growing worldwide in response to global psychiatrization.1 Organizations from the global South, such as the South African–based Pan African Network of People with Psychosocial Disabilities (PANUSP) (see Ibrahim, chapter 4 of this volume), make clear that “services and support must be delivered in non-paternalistic and non-patriarchal frameworks with choices available outside of the medical framework” and should include “the choice not to use western medical ‘solutions’” (PANUSP, 2012, pp. 2–3). To call upon people’s rights to non-medical interventions into distress serves as a reminder that these alternatives do exist, even if they are often eclipsed (or actively demonized) by the dominance of psycho-­ pharmaceutical approaches. Another key reason, then, to read colonialism alongside psychiatrization is to allow a more nuanced reading of resistance to psychiatry. For as psychiatry travels, so do the networks, initiatives, and movements that fight against psychiatric hegemony, including alternative frames of reference that do not treat distress as an illness and that name multiple realities in locally and Indigenously meaningful terms, not in the alien (and alienating) technical idioms of psychiatry (some of the myriad forms that this resistance takes are discussed in detail in Mills, 2014b). For Nandy (1987), Indigenous and traditional systems of medicine (and of agricultural practices, spiritualties, non-capitalist forms of exchange, etc.) are “indicators of a spirit which defies the power of a way of life which seeks to cannibalize all other ways of life” (p. 45). Thus there is a need to be always alert to the danger of a single story – the subtle ways that one perspective becomes definitive (Akomolafe, 2013). Such defiance is akin to speaking another language, “a language of dissent which would not make sense – and will not try to make any sense in the capitals of the global knowledge industry” (Nandy, 1983, p. xiii). For Thiong’o (1981), to speak in a language different from the colonizers is a step in “decolonizing the mind” (p. xiv). This approach has implications for potential action between otherwise

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incommensurate groups to come together to oppose forms of cognitive injustice and epistemicide enacted through single-story narratives of all kinds. The story told by those who promote global psychiatrization, such as the World Health Organization, is not the only one. It is important to tell other stories – stories that understand distress as locally and contextually embedded, historically specific, or entangled with global relations of inequality, because “the understanding of the world by far exceeds the Western understanding of the world” (Santos, 2012). Fanon urges the colonized to “work out new concepts” (Fanon, 1963, p. 255). Nandy has concrete suggestions in this regard: “the first concept ... has to be the victims’ construction of the West, a West which would make sense to the non-West in terms of the non-West’s experience of suffering” (1983, p. xii). This suggestion would enable a (re)configuration of experience in ways that make sense to people in terms of their grounded experiences of distress and that would not impose a single narrative of suffering, whether psychological, biomedical, or otherwise. This approach stakes out another space that does not fit the needs of colonialism. Such a space is the realization of the colonizers’ fear that the colonized will discover “an alternative frame of reference within which the oppressed do not seem weak” (Nandy, 1983, p. 11). Moving from charting the psychiatric reconfiguration of resistance to colonialism, to thinking through the more wide-scale coloniality and epistemicide at work through global psychiatrization, this chapter has aimed to resist telling a single story of the multiple realities of distress and to make visible the alternatives to the hegemony of psychiatric knowledge systems from the global North. This is important because to see that alternatives do exist in the present in the form of local knowledge and in counter-­hegemonic movements worldwide forms a key aspect of dissent. In tracing the many entanglements of psychiatry and colonialism – the psychiatrization at work within colonialism and the coloniality of psychiatrization – I have aimed to illustrate that there are many stories to tell of distress and dissent and that these stories have many beginnings and more than one end.

NOTE 1 See Korste (2012) for a review of recovery and peer- and user-led projects worldwide. For international mobilizations around mental health, and sometimes against psychiatry, see the work of Bapu Trust, the World Network

104  China Mills of Users and Survivors of Psychiatry, European Network of (ex) Users and Survivors of Psychiatry, and MindFreedom International. REFERENCES Addlakha, R. (2008). Deconstructing mental illness: An ethnography of psychiatry, women and the family. New Delhi: Zubaan. Aggarwal, N. (2008, July). Editorial: Farmer suicides in India; The role of psychiatry and anthropology. International Journal of Social Psychiatry, 54(4), 291–2. Medline:18720889 http://dx.doi.org/10.1177/0020764007088396 Akomolafe, A.C. (2013). Decolonizing the notion of mental illness and healing in Nigeria, West Africa. Annual Review of Critical Psychology, 10, 726–40. Arya, S. (2007, 27 September). Govt to study DNA link to suicides. Times of India. Ashcroft, B., Griffiths, G., & Tiffin, H. (2000). Post-colonial studies: The key concepts (2nd ed.). Abingdon, UK: Routledge. Bemme, D., & D’Souza, N. (2012). Global mental health and its discontents. Somatosphere. Retrieved from http://somatosphere.net/2012/07/global-mentalhealth-and-its-discontents.html Breggin, P.R. (2008). Brain-disabling treatments: Drugs, electroshock, and the psychopharmaceutical complex. New York: Springer. Bulhan, H.A. (1985). Frantz Fanon and the psychology of oppression. Boston: Boston University Press. http://dx.doi.org/10.1007/978-1-4899-2269-4 Butler, J. (1997). The psychic life of power: Theories in subjection. Stanford, CA: Stanford University Press. Césaire, A. (1972). Discourse on colonialism. New York: Monthly Review Press. Davar, B. (2014). Globalizing psychiatry and the case of “vanishing” alternatives in a neocolonial state. Disability and the Global South: An International Journal, 1(2), 266–84. Davar, B.V., & Lohokare, M. (2009). Recovering from psychosocial traumas: The place of dargahs in Maharashtra. Economic and Political Weekly, 44(16), 60–8. Dhareshwar, V. (2010). Politics, experience and cognitive enslavement: Gandhi’s Hindi swaraj. Economic and Political Weekly, XLV(12), 51–8. Diamond, S. (2014). What makes us a community? Reflections on building solidarity in anti-sanist praxis. In B.A. LeFrançois, R. Menzies, & G. Reaume (Eds.), Mad matters: A critical reader in Canadian Mad studies (pp. 64–78). Toronto: Canadian Scholars Press. Ernst, W. (1997). Idioms of madness and colonial boundaries: The case of the European and “native” mentally ill in early nineteenth-century British India. Comparative Studies in Society and History, 39(1), 153–81.

Global Psychiatrization and Psychic Colonization  105 Fanon, F. (1963). The wretched of the earth (C. Farrington, Trans.). London: Penguin Books. Fanon, F. (1967/1986). Black skin, white masks. London: Pluto Press. Fernando, S. (2010). Mental health, race and culture. London: Palgrave. Fernando, S. (2014). Mental health worldwide: Culture, globalization and development. New York: Palgrave Macmillan. http://dx.doi.org/10.1057/9781137329608 Gaines, A.D. (1992). Ethnopsychiatry: The cultural construction of psychiatries. In A.D. Gaines (Ed.), Ethnopsychiatry: The cultural construction of professional and folk psychiatries. Albany: State University of New York Press. Gorman, R., saini, a., Tam, L., Udegbe, O., & Usar, O. (2013). Mad people of color: A manifesto. Asylum, 20(4), 27. Grech, S. (2011). Recolonizing debates or perpetuated coloniality? Decentring the spaces of disability, development and community in the global South. International Journal of Inclusive Education, 15(1), 87–100. http://dx.doi.org /10.1080/13603116.2010.496198 Grosfoguel, R. (2010). The epistemic decolonial turn: Beyond political-economy paradigms. In D. Mignolo & A. Escobar (Eds.), Globalization and the decolonial option (pp. 65–77). London: Routledge. Halliburton, M. (2004, March). Finding a fit: Psychiatric pluralism in south India and its implications for WHO studies of mental disorder. Transcultural Psychiatry, 41(1), 80–98. Medline:15171208 http://dx.doi.org/10.1177/1363461504041355 Heinz, A. (1998). Colonial perspectives in the construction of the psychotic patient as primitive man. Critique of Anthropology, 18(4), 421–44. http://dx.doi .org/10.1177/0308275X9801800404. Higginbotham, N., & Marsella, A.J. (1988). International consultation and the homogenization of psychiatry in Southeast Asia. Social Science & Medicine, 27(5), 553–61. Medline:3227362 http://dx.doi.org/10.1016/0277-9536(88)90379-6 Hook, D. (2004). Fanon and the psychoanalysis of racism. In D. Hook (Ed.), Critical psychology (pp. 115–38). Lansdowne, South Africa: UCT Press. Hook, D. (2012). A critical psychology of the post-colonial: The mind of apartheid. London: Routledge. Incayawar, M., Wintrob, R., Bouchard, L., & Bartocci, G. (Eds.). (2009). Psychiatrists and traditional healers: Unwitting partners in global mental health. London: Wiley http://dx.doi.org/10.1002/9780470741054 Jilek, W.G. (1995). Emil Kraepelin and comparative sociocultural psychiatry. European Archives of Psychiatry and Clinical Neuroscience, 245(4–5), 231–8. Medline:7578286 http://dx.doi.org/10.1007/BF02191802 Joseph, A.J. (2015). The necessity of an attention to Eurocentrism and colonial technologies: An addition to critical mental health literature. Disability & Society, 30(7), 1021–41.

106  China Mills Korste, R. (2012). Empowerment, identity and hope: Recovery and peer/user-led models in global mental health. Retrieved from http://in2mentalhealth.wordpress .com/2012/09/03/empowerment-identity-and-hope-recovery-and-peeruser-ledmodels-in-global-mental-health/ Lancet Global Mental Health Group. (2007). Scale up services for mental disorders: A call for action. The Lancet, 370(9594), 1241–52. Medline:17804059 http:// dx.doi.org/10.1016/S0140-6736(07)61242-2 LeFrançois, B.A. (2013). The psychiatrization of our children, or, an autoethnographic narrative of perpetuating First Nations genocide through “benevolent” institutions. Decolonization, 2(1), 108–23. Lerner, G. (2010, 5 January). Activist: Farmer suicides in India linked to debt, globalization. CNN. Littlewood, R. (1993). Ideology, camouflage or contingency? Racism in British psychiatry. Transcultural Psychiatry, 30(3), 243–90. http://dx.doi.org/10.1177 /136346159303000304 Loomba, A. (1998/2009). Colonialism / Post-colonialism: The new critical idiom. London: Routledge. MacLeod, R. & Lewis, M. (Eds.). (1988). Disease, medicine and empire: Perspectives on Western medicine and the experience of European expansion. London: Routledge. Mahone, S. (2006). The psychology of rebellion: Colonial medical responses to dissent in British East Africa. Journal of African History, 47(2), 241–58. http:// dx.doi.org/10.1017/S0021853706001769 Marks, S. (1997, August). What is colonial about colonial medicine? And what has happened to imperialism and health? Social History of Medicine, 10(2), 205–19. Medline:11619493 http://dx.doi.org/10.1093/shm/10.2.205 McGruder, J. (2001). Life experience is not a disease or why medicalizing madness is counterproductive to recovery. Occupational Therapy in Mental Health, 17(3-4), 59–80. http://dx.doi.org/10.1300/J004v17n03_05 Meekosha, H., & Soldatic, S. (2011). Human rights and the global South: The case of disability. Third World Quarterly, 32(8), 1383–97. http://dx.doi .org/10.1080/01436597.2011.614800 Mills, C. (2014a). Decolonizing global mental health: The psychiatrization of the majority world. London: Routledge. Mills, C. (2014b). Sly normality: Between quiescence and revolt. In B. Burstow, B.A. LeFrançois, & S. Diamond (Eds.), Psychiatry disrupted: Theorizing resistance and crafting the (r)evolution (pp. 208–24). Montreal: McGill-Queen’s University Press. Mills, C. (2015). The psychiatrization of poverty: Rethinking the mental health– poverty nexus. Social and Personality Psychology Compass, 9(5), 213–22. http:// dx.doi.org/10.1111/spc3.12168

Global Psychiatrization and Psychic Colonization  107 Moncrieff, J. (2007, July–September). Co-opting psychiatry: The alliance between academic psychiatry and the pharmaceutical industry. Epidemiologia e Psichiatria Sociale, 16(3), 192–6. Medline:18020190 Mosher, L. (1998). Letter of resignation to the American Psychiatric Association. Retrieved from http://www.moshersoteria.com/articles/resignation-from-apa/ Nandy, A. (1983). The intimate enemy: Loss and recovery of self under colonialism. Oxford: Oxford University Press. Nandy, A. (1987). Traditions, tyranny and utopias: Essays in the politics of awareness. Oxford: Oxford University Press. Nandy, A. (1998). Defining a new cosmopolitanism: Towards a dialogue of Asian civilisations. In C. Kuan-Hsing (Ed.), Trajectories: Inter-Asia cultural studies (pp. 142–52). London: Routledge. Pan African Network of People with Psychosocial Disabilities (PANUSP). (2012). Press Package. Retrieved from http://www.panusp.org/wp-content /uploads/2011/10/Press-Release-WHO-Launch-Toolkit-28-June-2012.pdf Patel, V. (2007). Mental health in low- and middle-income countries. British Medical Bulletin, 81–82(1), 81–96. Medline:17470476 http://dx.doi.org/10.1093/bmb/ldm010 Patel, V., Araya, R., Chatterjee, S., Chisholm, D., Cohen, A., De Silva, M., ... van Ommeren, M. (2007, 15 September). Treatment and prevention of mental disorders in low-income and middle-income countries. Lancet, 370(9591), 991–1005. Medline:17804058 http://dx.doi.org/10.1016/S0140-6736(07)61240-9 Patel, V., Boyce, N., Collins, P.Y., Saxena, S., & Horton, R. (2011, 22 October). A renewed agenda for global mental health. Lancet, 378(9801), 1441–2. Medline:22008422 http://dx.doi.org/10.1016/S0140-6736(11)61385-8 Patel, V., Collins, P.Y., Copeland, J., Kakuma, R., Katontoka, S., Lamichhane, J., ... Skeen, S. (2011, February). The movement for global mental health. British Journal of Psychiatry, 198(2), 88–90. Medline:21282777 http://dx.doi .org/10.1192/bjp.bp.109.074518 Patel, V., Saraceno, B., & Kleinman, A. (2006, August). Beyond evidence: The moral case for international mental health. American Journal of Psychiatry, 163(8), 1312–15. Medline:16877638 http://dx.doi.org/10.1176/ajp.2006.163 .8.1312 Perspectives. (2009). Harvesting despair: Agrarian crisis in India. Delhi: Perspectives. Poornima, S. (1995). Medicine in colonial Andhra: A study in the production of medical knowledge systems, 1880–1930 (Unpublished master’s thesis). Pune, University of Hyderabad. Pupavac, V. (2002). Pathologizing populations and colonizing minds: International psychosocial programs in Kosovo. Alternatives, 27(4), 489–511. http://dx.doi .org/10.1177/030437540202700404

108  China Mills Rahnema, M. & Bawtree, V. (Eds.). (1997). The post-development reader. London: Zed Books. Rose, N. (2006). Disorders without borders? The expanding scope of psychiatric practice. Biosocieties, 1(4), 465–84. http://dx.doi.org/10.1017/S1745855206004078 Santos, B.S. (2012). Spaces of Transformation: Epistemologies of the South; Reinventing Social Emancipation. Retrieved from http://www.tate.org.uk/whats -on/tate-modern/talks-and-lectures/spaces-transformation-epistemologies -south Santos, B.S. (Ed.) (2014). Epistemologies of the South: Justice against epistemicide. Boulder, CO: Paradigm. Santos, B.S., Nunes, J.A., & Meneses, M.P. (2007). Introduction: Opening up the canon of knowledge and recognition of difference. In B.S. Santos (Ed.), Another knowledge is possible: Beyond northern epistemologies (pp. xix–lxii). London: Verso. http://dx.doi.org/10.1057/9780230590908_1 Shalhoub-Kevorkian, N. (2014). Human suffering in colonial contexts: Reflections from Palestine. Settler Colonial Studies, 4(3), 277–90. http://dx.doi.org/10.1080 /2201473X.2013.859979 Sharma, D. (2004). India’s agrarian crisis: No end to farmers’ suicides; Share the world’s resources (SWTR). Retrieved from http://www.stwr.org/food-security -agriculture/the-collapse-of-green-revolution.html Shiva, V. (1990). Reductionist science as epistemological violence. In A. Nandy (Ed.), Science, hegemony and violence: A requiem for modernity (pp. 232–56). Tokyo: United Nations University. Shukla, A., Philip, A., Zachariah, A., Phadke, A., Suneetha, A., Davar, B., ... Shatrugna, V., & CEHAT. (2012, October–December). Critical perspectives on the NIMH initiative “grand challenges to global mental health.” Indian Journal of Medical Ethics, 9(4), 292–3. Medline:23099610 Siddiqui, S. (2016). Religion and psychoanalysis in India: Critical clinical practice. London: Routledge. Smith, L.T. (1999). Decolonizing methodologies: Research and Indigenous peoples. London and New York: Zed Books. Summerfield, D. (2008, 3 May). How scientifically valid is the knowledge base of global mental health? BMJ: British Medical Journal, 336(7651), 992–4. Medline:18456630 http://dx.doi.org/10.1136/bmj.39513.441030.AD Thiong’o, N. (1981). Decolonizing the mind: The politics of language in African literature. Nairobi: East African Educational Publishers. Thomas, P., Bracken, P., Cutler, P., Hayward, R., May, R., & Yasmeen, S. (2005). Challenging the globalisation of biomedical psychiatry. Journal of Public Mental Health, 4(3), 23–32. http://dx.doi.org/10.1108/17465729200500021

Global Psychiatrization and Psychic Colonization  109 Timimi, S. (2002). Pathological child psychiatry and the medicalization of childhood. Hove, UK: Brunner Routledge. Tuck, E., & Yang, K.W. (2012). Decolonization is not a metaphor. Decolonization, 1(1), 1–40. Vaughan, M. (1993). Madness and colonialism, colonialism as madness: Rereading Fanon; Colonial discourse and the psychopathology of colonialism. Paideuma: Mitteilungen zur Kulturkunde, 39, 45–55. Retrieved from http://www .jstor.org/stable/40341656 World Health Organization (WHO). (2001a). Mental health: A call for action by world health ministers. Ministerial Round Tables, 54th World Health Assembly. Geneva: Author. World Health Organization (WHO). (2001b). World health report 2001: Mental health; New understanding, new hope. Geneva: Author. World Health Organization (WHO). (2013). Mental health action plan 2013–2020. Geneva: Author.

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PART TWO Decolonizing Research and Practice

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4 Mental Health in Africa: Human Rights Approaches to Decolonization mohamed ibrahim

Introduction Contemporarily the discourse that shapes African approaches to psychosocial disability1 is substantially influenced by the continent’s colonial history. In most African countries, laws pertaining to mental health have been inherited from colonial governments, which drafted them, in part, as a powerful mechanism for controlling the African population politically and socially, perpetuating oppression and protecting White settler rule. In effect, these laws promoted gross human rights violations, social exclusion, and excessive restriction of personal liberties. Yet, currently less than half of African countries have undertaken meaningful legal reforms rid themselves of this legacy (Edgar & Sapire, 2000; Fournier, 2011; Ibrahim, 2014; McCulloch, 1995; Westbrook, 2011). Across the continent mental health services are woefully lacking, and people labelled as mentally ill face long-term institutional confinement in stand-alone, colonial-built psychiatric hospitals, where chemicals, physical restraints, and punishment are still widely administered. Unfortunately, independent African governments have done little to redress these human rights violations. Indigenous and spiritual healings were curtailed and criminalized during colonial times. Moreover, upon reaching independence, most nations ignored mental health and retained the Western biomedical approach, which is not only under-resourced but of questionable effectiveness and appropriateness; worse still, it has been a tool of ongoing colonialism (Ibrahim & Morrow, 2015; Mkize, 2009; Nevin, 2006; Robb, 2012; Whitaker, 2010). Those living with psychosocial disabilities face widespread stigma and violence at institutional and community levels; social and political exclusion;

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and unparalleled discrimination in terms of access to economic opportunities, health services, justice, and every other important facet of life (Robb, 2012). This violence and stigma, coupled with the criminalization that arose through the colonial legacy, results in a triple tragedy for those with psychosocial disabilities in Africa and requires much more than the biomedical approach of “pill pushing.” This chapter focuses on three interconnected issues or themes: the historical and contemporary effects of colonial psychiatry in Africa; the emerging political role played in Africa by persons with psychosocial disabilities in addressing mental health from a human rights perspective; and the need to decolonize, indigenize, and democratize practice, research, and training such that they align with socio-cultural and economic realities on the continent and with a social justice framework. Along the way I will also share my own educational and clinical experiences from years of practice in the East African nation of Kenya. To highlight more constructive ways of addressing mental health, I describe current efforts on behalf of continentwide consumer and survivor organizations to enhance human rights and social justice for mental health in Africa and, more important, to resist continued colonization. In particular, I focus on the Pan African Network of People with Psychosocial Disabilities (PANUSP), formerly known as the Pan African Network of Users and Survivors of Psychiatry, a network of organizations in Africa for and by persons with psychosocial disabilities – that is, persons with lived experience and who wear the label of mental illness. PANUSP is a member of the World Network of Users and Survivors of Psychiatry (WNUSP, http://www.wnusp.net), a global movement with representatives in over fifty countries (PANUSP, 2011). PANUSP has come into existence at a very critical time, when persons living with psychosocial disabilities face another round of Western psychiatrizing hegemony in the twenty-first century in the name of the global mental health campaign. The global mental health campaign is driven by the biomedical model and supported by the World Health Organization (WHO) and its global ally, the Movement for Global Mental Health. PANUSP and its global partner WNUSP, among others, have come out strongly against this global mental health campaign, which they argue is another attempt to medicalize a social phenomenon that requires broader social, economic, and human rights solutions (Robb, 2012). Historically, the Western biomedical psychiatric paradigm was not a benevolent form of medicine aimed at healing Africans who were struggling with mental distress, but rather an important tool of the colonial powers to justify colonialism, oppression, and gross human rights abuses (Keller,

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2007; Mahone & Vaughan, 2007). For this reason, decolonizing African mental health systems should be the first natural step in moving the mental health debate forward and in humanizing the sector. Those with lived experience should be welcomed as equal members of society and treated with respect and dignity. Not Yet Independent In 2013 Africa rejoiced. The African Union, which in 2001 had replaced the Organization of African Unity (OAU), celebrated its fiftieth anniversary. Many African countries celebrated or planned grand jubilee events to mark their freedom from colonialism (African Union, 2013). But those with psychosocial disabilities may not have been in the mood to join in the freedom parties just yet, because in most African nations mental health laws retained their colonial form in both policy and practice. Headlines covering mental health from major news outlets in different parts of Africa told stories of neglect and unspeakable violence against those with psychosocial disabilities. For example, Bariga (2013) of Human Rights Watch summarized the sad situation in Ghana’s psychiatric hospitals as “Involuntary treatment: The invisible health care crisis,” and the headline by Olingo (2013) of the Daily Nation of Kenya expressed the unfortunate situation in Kenya’s foremost mental health hospital: “45 mentally ill patients escape from Kenya’s mental hospital.” Meanwhile, two recent human rights reports, Silenced Minds: The Systemic Neglect of the Mental Health System in Kenya by the Kenya National Commission on Human Rights (KNCHR, 2011) and Like a Death Sentence: Abuses against Persons with Mental Disabilities in Ghana by Human Rights Watch (2012), highlight the gross and systemic institutional and communal violence against those with psycho­social disabilities. In Africa now, as then, psychiatry is often colonial, repressive, abusive, and detrimental to the health and recovery of those whom it purports to treat, many of whom are confined to colonial-era, stand-alone institutions. Independent African nations inherited many unjust laws and policies from European colonial powers, but few of them remain as intact and oppressive as those found in the current mental health systems across the continent. Mental Hospitals as Centres of Psychiatric Racism During colonial times, medicine in Africa, especially psychiatry, had a very active role as an agent of colonization, oppression, and racialization of

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Africans. In this section I expand on this argument, which has been put forward by multiple critics (see Campbell, 2007; Edgar & Sapire, 2000; Keller, 2007; Mahone &Vaughan, 2007; McCulloch, 1995; Metzl, 2009) through an examination of the role played by scientific racism in the colonial project. Further, I argue that medicine and psychiatry played an even more regressive role than did colonial governments in instituting and upholding racist and degrading practices. It is important to recognize the historical role that Western science has played in Africa. It was by establishing false “scientific grounds” (especially in psychiatry and psychology) that colonial powers claimed that the natives – be they Blacks in sub-Saharan Africa, or Arabs in North Africa – were less intelligent and mature than their White counterparts and needed to be treated as sub-humans, firmly kept in their rightful place as colonial subjects, servants, labourers, and slaves (Campbell, 2007; Jackson, 2005; McCulloch, 1995; Vaughan, 1991). In a 1933 address to a medical conference in Rabat, Hubert Lyautey, the French conqueror of Morocco, North Africa, was explicit about the role of doctors in advancing colonial interests when he said, “The physician, if he understands his role, is the primary and the most effective of our agents in penetration and pacification” (Mahone & Vaughan, 2007, p. 32). With the establishment of the East African and Algiers Schools of Psychiatry in Kenya and Algeria, respectively, in the early 1900s, psychiatrists lived up to Lyautey’s call. Both schools, as well as other psychiatric institutions across the continent, became powerful scientific mouthpieces for the abnormalization of the African mind and intellect, with the intent to “other and delegitimize their being” (Jackson, 2005; McCulloch, 1995). The most vocal colonial psychiatrists were those practising in countries with significant established White settler communities such as Kenya, Algeria, South Africa, and Zimbabwe (Sadowsky, 1999). Leaders at hospitals in these countries ensured that their institutions played a crucial role as centres for eugenics research and testing of new treatments that later became available to European patients, both in Africa and Europe (Jackson, 2005; Keller, 2007; McCulloch, 1995). In most cases the deaths and complications among native patients that arose from these procedures did not matter to the authorities. For instance, in 1942 the death toll from electroconvulsive therapy (ECT) rose dramatically to an average of six per month in the Ingutsheni Lunatic Asylum in Zimbabwe. A commission of inquiry was formed to investigate, among other complaints, the indiscriminate use of ECT for non-psychiatric conditions like tuberculosis, tumours, and syphilis among African patients (McCulloch, 1995, pp. 38–9). Despite

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evidence tabled against the hospital’s physician, the commission ruled out ECT as the cause of the deaths and failed to sufficiently address the high mortality among the African in-patients, demonstrating the insignificance of African lives to the colonial administration. Similar or even more harmful treatments have been extensively used in North Africa where French colonial psychiatrists used ECT, insulin coma therapy, and other untested interventions on North African Muslims on a large scale, while their counterparts in France followed proper scientific protocols of testing new treatments on animals first and then gradually scaling up to human trials (Keller, 2007). Psychiatric colonization and its strong link with slavery was transatlantic in nature as was evident with the happenings in North America when in 1851, Dr Samuel Cartwright, a leading American pro-slavery psychiatrist, popularized a racist psychiatric diagnosis for enslaved blacks called “Dysaethesia Aethiopica,” or “hebetude of the mind and obtuse sensibility of the body,” a condition he claimed was characterized by laziness and lesions (Jackson, 2001, p. 9). He also coined the term Drapetomania, a category he used to diagnose slaves who attempted to escape captivity. For both conditions he recommended whipping as the treatment of choice (Jackson, 2001; Metzl, 2009). Seventy years later, following in Cartwright’s footsteps, Dr H.L. Gordon suggested racially demeaning psychiatric labels such as “bradyphysis” (backwardness) and amentia (lack of intelligence), which he claimed were common conditions among Kenyan natives. Gordon also doubted the “educability of Africans” (Campbell, 2007; Mahone & Vaughan, 2007), arguing that native Africans’ intelligence level was equivalent to that of a lobotomized European and that educating Africans was a waste of time and resources. He advocated for continued colonization. In fact, he hypothesized that a higher incidence of dementia praecox would result among educated Africans and warned of the perils of educating them (Mahone & Vaughan, 2007; McCulloch, 1995). This hypothesis even stirred tension among the colonialists, with the then education administrator H.S. Scott in Kenya stating that “according to Gordon, I am engaged in preparing Africans for dementia praecox” (Mahone & Vaughan, 2007, p. 45). In fact, physicians were far more effective as political agents than those in other disciplines, such as anthropologists, when it came to justifying oppression of colonized citizens by shifting the discussion from a sociopolitical, justice, or economic issue to an individualized pathological one. Such was the case during the uprising of the Mau Mau (a movement credited with the achievement of Kenyan independence). Colonial physicians

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such as John Wilkinson and Michael Kirby, in 1954 and 1957 respectively, were the first to expertly write on the resistance movement from a psychopathological view (McCulloch, 1995). In contrast, Louis Leaky, an anthropologist, though sympathetic to the colonial establishment, disagreed with the medical explanatory model and hypothesized that prevailing economic and socio-political issues were contributory factors in the rebellion (McCulloch, 1995). In North Africa, psychiatric interventions – or torture, to be precise – became useful during the Algerian independence war when unmodified ECT (ECT administered without anaesthesia) become a tool of interrogation and intimidation to counter the rebellion (Keller, 2007). Such were the extremes of Western psychiatry as practised on the African continent: a free African, or one trying to be free, was regarded as deviant or abnormal by the medical establishment and the colonial government. No wonder that at the height of the Mau Mau rebellion the colonial government sought the advice of Dr J.C. Carothers, a well-known colonial psychiatrist in Africa and former chief psychiatrist at Kenya’s Mathari Lunatic Asylum (McCulloch, 1995). As an expert on “African mentality,” Carothers provided a detailed analysis of the troubled mind of the Kikuyu, one of the largest ethnic groups in Kenya, from which the Mau Mau drew most of its support. In his landmark article “The Psychology of the Mau Mau” he created a pathologized “kikuyu personality” and almost entirely ignored the underlying issue of occupation, exploitation, and racism, recommending forceful and coercive ways to deal with the uprising and the community at large (Mahone & Vaughan, 2007). Although known for his racist inclinations, Carothers was nevertheless hired by the WHO as a mental health consultant in Africa, which served to legitimize his views and transform them into a knowledge base for African mental health. Carothers’s monograph The African Mind in Health and Disease, series no. 17, was published by the WHO in 1953 (Carothers, 1970). The book discussed the anatomical, physiological, and skin colour differences of natives vis-à-vis Blacks and Europeans and on the inferiority of Africans owing to such differences (Carothers, 1970). In addition to the pathologization of the masses in Africa, criminalization of those psychiatrized was achieved by the penal code and the mental health laws. Mental health institutions were largely part of the prisons department during most of the colonial era, especially in sub-Saharan Africa, and this institutional association established the current deep-rooted, prevailing stigma and criminalization of those on the continent with psychosocial disabilities. The Lunacy Act and later the Mental Health Act were widely in place across the continent, especially in the British colonies of

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West, South, and East Africa, and used politically to suppress rebellion and detain individuals or groups who appeared to be a threat to the colonial establishment. This was the case for Nonthetha Nkwenkwe, the South African spiritual leader who was committed to a psychiatric facility in 1922 because of her influence and the threat she posed to White minority rule (Edgar & Sapire, 2000). The political reason for psychiatrizing Nonthetha was made plain when the presiding judge alluded to the fact that a judgment of insanity would help to deflate her movement. She eventually died in Pretoria Mental Hospital in 1935 (Edgar & Sapire, 2000). In another notable example of the psychiatrization of Africans to delegitimize their quest for freedom, Somalia’s hero and freedom fighter Mohamed Abdullah Hassan was labelled the “Mad Mullah” by the British colonial government in Northern Somalia for his strong leadership between 1920 and 1940 against the British and Italians occupying his native country (Lewis, 2003). Likewise, in many parts of Africa, colonial governments, through the Witchcraft Suppression Act, restricted or outlawed African healing systems and threatened healers with arrest and punishment as a way of both colonizing and depriving Africans of their sacred and important cultural healing and educational systems. The Witchcraft Suppression Act was effective in demonizing freedom fighters like the Mau Mau as evil and superstitious oath takers who were hell bent on destroying the White race and therefore deserved to be lethally suppressed. It is estimated that more three hundred thousand Kenyans, mainly of Kikuyu ethnic group, were killed during the Kenyan emergency period of 1952–62 at the height of the Mau Mau uprising (Hasian, 2013). To this day, such laws still exist and are enforced in some countries, including Zimbabwe and Uganda (Abbo, 2011; Nevin, 2006). Independent Africa and Mental Health Services From slavery and colonialism to independence wars, endless post-­ independence conflicts, and natural calamities, Africa, the second-largest continent, with more than fifty independent nations and one billion people, has had more than its fair share of problems. Sadly, mental health issues have largely remained on the margins (Farah, Kiamba, & Mazongo, 2011). Beyond these socio-economic and political challenges, the continent is also bedevilled by a significant physical health burden, with high mortality and morbidity rates arising from HIV/AIDS, malaria, tuberculosis, and maternal and childhood diseases, all of which take a toll on the psychological well-being of the people (Fisher & Baum, 2010; Njenga, 2002).

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Unfortunately, independent African governments and scholars have done little to address the psychological impact of long-standing, intergenerational societal trauma and have intentionally or unintentionally maintained the colonial status quo, an action that is mostly responsible for the current dismal situation (Njenga, Nguithi, & Kang’ethe, 2006). From Blida (Algeria) to Ingutsheni (Zimbabwe) to Mathari (Kenya) to Kissy (Sierra Leone) to Zomba (Malawi), colonial-built, stand-alone psychiatric hospitals across the continent remain the sole mental health service providers in many twenty-first-century independent African states, with few changes in building structures, attitudes, policy, or treatment protocols (KNCHR, 2011; McCulloch, 1995). In Nigeria, and indeed in many other African countries, the cruelty of the colonial psychiatric system is still in place, as is evident in the use of unmodified ECT, during which patients are forcefully pinned to the floor by strong men to prevent them from being physically hurt due to the powerful seizures induced by the electric shock (James, Omoaregba, Igberase, & Oloto, 2009). As a student nurse at some of the biggest hospitals in Kenya, namely Machakos General Hospital and Nakuru Provincial General Hospital in 1996 and 2004, respectfully, I witnessed direct ECT treatments and saw the anguish and terror in the eyes of patients who were forcibly taken down and given electric shocks while they were conscious. Many suddenly lost consciousness and violently shook owing to the strong seizures induced by the electric current. If this is not outright torture, or torture as treatment, then I do not know what torture really means. In a country with a tainted political history, where political prisoners have been physically and psychological tortured, and where this has been recognized as torture by so-called respected bodies such as the Kenya National Commission on Human Rights (KNCHR), I do not understand why the same would not apply to direct ECT. In fact, as signatories to the United Nations Convention on the Rights of Persons with Disabilities, Kenya, India, and other countries still allowing direct ECT are in clear contravention of the treaty, which calls for the abolition of inhumane, degrading, and harmful treatments (Minkowitz, 2007). This lack of questioning of severely harmful Western biomedical treatments, especially by the political and medical elite, is a clear indication of the superior positionality of the Western biomedical paradigm in Kenya and across the global South. Mills (2013) discusses the similar hegemonic positioning of Western treatments in the Indian context, where direct ECT is widespread, and psychiatrists conduct mobile clinics and administer ECT even to children. In my own experience, while on an educational visit

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to a psychiatric department in a busy Mumbai hospital in India in 2009, I was appalled by the number of patients undergoing ECT on any given day; one of the psychiatrists gave a rough estimate of thirty to sixty patients per day. It is time that the KNCHR and other human rights organizations declare direct ECT as torture, and call for outlawing its use as a psychiatric treatment. If African mental hospitals are the physical and clinical manifestation of colonialism in relation to mental health, the continent’s health care education represents a systemic legacy. Health care education is deeply rooted in the colonial educational system, as most academic institutions have maintained Western forms and shunned African traditional educational systems. Kreitzer (2012) noted the lack of local content in the social work curriculum in the University of Ghana, West Africa, and the enthusiasm of the faculty and students in embracing the Western model in its entirety, in a country where the prevailing cultural, socio-economic, and political systems differ from those in the West. In fact, universities across post-­independent Africa stubbornly remain “black outside and white inside” (Kreitzer, 2012), as the preference for a purely Western form of education is apparent throughout the continent. When I was training as a registered psychiatric nurse at the country’s premier medical institute, the Kenya Medical Training College, our curriculum was devoid of African perspectives on mental health or illness. I vividly remember a lecturer demonstrating her ignorance by a glib response to my question regarding the lack of African knowledge about mental health, calling local cultural responses “primitive” and therefore unworthy of being part of the curriculum. After relocating to North America, first to the United States and then Canada, I realized how much easier it was for me to practise as a mental health clinician in North American clinical settings than in Kenya because my training was purely biomedical and more relevant to the Western explanatory model than to the various local Kenyan cultures. This bias towards a Western education can be viewed historically through the lens of the dichotomy of “modern” Western versus “primitive” African knowledge, which was originally introduced by the colonial forces, and, contemporarily in economic terms, as assuring greater employability for graduates, as well as transnational emigration to developed nations. This brain drain immensely benefits Western countries, an issue that has been called one of the biggest threats to Africa in addressing its many and complex health needs, including HIV/AIDS, malaria, and tuberculosis, which claim millions every year (Kirigia et al., 2006). A significant percentage

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of African-trained health professionals emigrate to Western countries for economic reasons (Kirigia et al., 2006; Ndetei & Szabo, 2011), with the bulk ending up in English-speaking countries. For instance, by some estimates, more Ghanaian psychiatrists practise in Canada than in the entire country of Ghana, with its twenty million people, and more than half of the 340 Nigerian psychiatrists are based in the United Kingdom (Gureje & Alem, 2000). Another study estimated that at least 25 per cent of Nigerian psychiatrists move to the Western world within five years of finishing their residencies (Oyelere, 2007). Thus, we can conclude that African health care education – still colonial in its preference for Western styles of learning – and the resulting movement of trained health workers from Africa to the Western world in the globalized era constitute an outcrop of ongoing colonization that continues to benefit the health care systems and economies of Western countries, as well as multinational drug companies mostly operating from the global North. But the story of being “white inside” starts much sooner, at kindergarten age, where African spaces of learning are hostile to many things Indigenous, and where speaking your ethnic language in the school compound leads to corporal punishment. Many of today’s health professionals across the continent grew up knowing that learning the White man’s language and knowledge was not only a way to join the burgeoning African elite but also a strategy to escape punishment, shame, and guilt at school (Ndura, 2006). These youngsters were taught and systematically conditioned to dislike and devalue their African culture, knowledge, and ways of life. They are the ones who take over the political and professional positions of the newly independent nations, thus perpetuating the same systemic and structural oppression inherited from colonial powers (Ndura, 2006). Ndura (2006), an education scholar, in describing the educational system in French-speaking, Belgium-colonized Burundi, argued that “the entire educational system, from the boarding schools to the curriculum, was set up to bring shame to native cultures and aspiration for and honor to European or Western cultures” (p. 91). Ndura described her experience in boarding school, where she was subjected to corporal punishment for speaking her native language, and where the French language became a “symbol of safety, power and social advancement” (p.  90). In my own life, growing up and attending a local school in a rural village in northern Kenya in the early 1980s, where Western-educated individuals represented about 1 per cent of the population, speaking English was strictly enforced. Public shaming in front of peers, and corporal punishment, was standard for those who broke the language rules.

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Meanwhile, apart from assaults by Western colonial biomedical professionals and services, traditional African healers were, from colonial times, condemned as evil, malevolent, satanic, and ungodly by Christian missionaries, who worked hand in hand with colonial powers to Christianize and “civilize” Africans. Since most health professionals in colonial times had to embrace Christianity to attend at mission schools, African healing systems had no chance of legitimacy in post-independent Africa and still struggle fifty years later (Abbo, 2011; Mahone & Vaughan, 2007; Ndura, 2006). It is insulting to the African people for African mental health professionals to follow the policies of colonial psychiatrists like J.C. Carothers, a man known for his essentializing and racist views of the continent and its people and who, even while acknowledging the usefulness of traditional healing systems, argued that traditional healers should not be formally recognized by the mainstream health sector. Now, sixty years after colonial psychiatry called for the marginalization of traditional health care, sadly such marginalization remains in force in many parts of Africa (Hillenbrand, 2006; Sadowsky, 1999). Two important health incidents, which occurred separately in 2011 and 2013 in the East African nations of Tanzania and Kenya, and which captured the world’s attention, underscore the overt – and covert – policy and attitude towards health care, including mental health with respect to the complete dominance of biomedical over Indigenous health perspectives. In 2011 a retired priest-turned-herbalist, Ambilikile Mwasipile, also known as Babu, from Loliondo in northern Tanzania, claimed that he could heal and cure people’s various illnesses using a combination of herbal medicine and spiritual healing. Babu was such a phenomenon that his fame spread like bushfire through the entire region. People of all walks of life – poor, rich, and the mighty – came from the neighbouring countries and as far as South Africa, by road and air, with lines stretching up to seven kilometres, to see him (Ramachandran, 2011). The story of Babu was well covered by the Kenya media, as thousands of Kenyans from every corner of the country flocked to his clinic across the border in Tanzania. There were genuine public health concerns about his claim, however, as people with infectious conditions such as HIV and other chronic illnesses opted for his medicine rather than their daily dose of regular pills, and both the Tanzanian and the Kenyan government had a duty to protect their citizens. But the call for Babu’s arrest by Kenya’s health minister, without investigating his claims, for the simple reason that he was a mganga (traditional healer, Swahili), was telling of the pervasive hostility towards Indigenous healers (Muiruri, 2011). Although the call for his arrest was inconsequential because Babu

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was Tanzanian and practised his craft in his homeland, the message was all too clear: Kenyan healers should worry about their government’s continued criminalization of African healing systems. Interestingly, the Tanzanian government’s earlier ban on Babu’s treatment was reversed due to popular demand. The government was actually obliged to provide security support to Babu because of the extremely high number of patients thronging the small village, which lacked the capacity to handle such multitudes. However, when, in the summer of 2013, a large number of patients forcefully escaped from Mathari hospital, Kenya’s largest national referral psychiatric hospital, with serious complaints of human rights violations, poor living conditions, and the use of ineffective psychotropic medications, there were no calls for arrest, resignation, or investigation into the quality of treatment at the facility, and the only official to speak on the issue was a police inspector, who called for the re-arrest of the escapees (Mwaniki, 2013). In North Eastern Province of Kenya where I come from, successive independent Kenyan governments have perpetuated the colonial legacy of suppressing Indigenous healing systems. To this day the police and provincial administration, under the direction of the powerful Ministry of Internal Security, maintain a ban on Ayana or Mingis, a popular folkloric healing system that is widely used for mental distress across northern Kenya and the Horn of Africa (Somalia, Djibouti, and Ethiopia). Security officers regularly track down and arrest healers, confiscate their properties, and leave many people without any alternative form of treatment or healing. The province remains the only one with no formal mental health services. Yet the national government, which is constitutionally mandated to provide health care services to all its citizens, not only denies the province’s residents mental health services but deprives them of their Indigenous healing system (Ibrahim, 2014; KNCHR, 2011). All of these examples highlight the continuing marginalization and undermining of African healing systems, and the privileging of Western biomedical practices, even when the latter are clearly harmful, as in the case of the Mathari mental hospital. Global Mental Health With mental health gaining global prominence as an issue in the past few years, especially in low-income and lower-middle-income countries, Africa is in the spotlight because of the lack of modern mental health services, owing to a lack of commitment by African governments and a severe shortage of mental health professionals (World Health Organization [WHO], 2008). As a result, the WHO and its allies, especially the Movement for

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Global Mental Health, have been pushing for an ambitious project to increase mental health services by making psychotropic drugs more accessible and by training more mental health professionals (Abbo, 2011; Oyelere, 2007; WHO, 2008). This movement, which targets the global South, is based on a 2004 WHO study called the Global Burden of Disease and on a series of articles published in 2007 by the Lancet journal, which reported mental illness to be a leading cause of disability around the globe. The movement claims that 75 per cent of those affected by mental, neurological, and substance abuse (MNS) disorders live in low-income and lower-middle-income countries without access to mental health services (WHO, 2008). The WHO (2010) therefore produced a framework dubbed the Mental Health Gap Action Program to guide governments and health service providers in scaling up treatments for MNS. The WHO study used a metric system called Disability-Adjusted Life Year (DALY) to quantify the total years of lives lost to mortality and morbidity for each given disease. In their findings, mental illness was projected to be at the top of the list of most disabling diseases by 2020 – hence the global significance and the rationale for Western biomedical interventions (Patel & Prince, 2010; WHO, 2008). However, the WHO’s campaign for the Mental Health Gap Action Program has faced fierce criticism from not only global and pan-African survivor groups but also prominent scholars and authors (see Fernando, 2011; Mills, 2013; Summerfield, 2008; Watters, 2011) who joined the fray and questioned or outright criticized the WHO study with respect to the validity of the tools used to measure mental illness across cultures, as most of these were developed for Western populations. Another concern about the campaign is the centrality of psychopharmacology as the main driver for scaling up mental health treatments in the global South (Mills, 2013; PANUSP, 2011; Patel, 2011; WHO, 2008). In addition, critics also claim that, if left unchecked, the current campaign will globalize the Westernization of distress in the form of the biomedical psychiatric paradigm, thus suppressing diverse understandings of human distress and feelings and eventually erasing culturally appropriate ways of coping with those challenges. Although, as mentioned above, the campaign is geared primarily towards the global South, the debates are happening primarily in Western metropolises and among Western experts. By approaching African mental health from an imperial Western perspective, the WHO and its allies are perpetuating the ongoing colonization of African mental health services. In so doing, they are inflicting the same kind of damage that they did fifty years ago when, as described earlier, the

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organization hired the known racist J.C. Carothers as their consulting mental health expert for Africa (Carothers, 1970;Summerfield, 2008). With all the hype about scaling up to address mental health in Africa, less attention is being paid to the significant role played by complementary, alternative, and traditional healing systems, even though studies have found that 80 per cent of the continent’s population still prefer traditional healers for their health needs (Abbo, 2011; Abdullahi, 2011). For the most part, traditional medicine remains the only accessible and affordable option on a continent where poverty is rampant, and in most countries in sub-Saharan Africa where half the population makes less than a dollar a day (Abbo, 2011; Abdullahi, 2011). Traditional African health care was meant to be communal and non-commercialized. Payments were symbolic, in kind or non-monetary, and sustainability was guaranteed, as opposed to modern medicine, which becomes more expensive by the day (Abdullahi, 2011). African healing systems are holistic in nature and deeply rooted in local cultures and beliefs in health and illness – attributes that fit well with the WHO’s definition of health as the complete state of physical well-being, and not just freedom from illness. In fact, a biopsychosocial and spiritual approach to health and illness has been practised in African societies for centuries, and it is only recently that the value of this approach has  been appreciated by Western health care systems (Ataudo, 1985; Kubukeli, 1999). Other bodies of literature support the effectiveness and culturally appropriate nature of traditional healing methods, with many researchers calling for these methods to be developed and systematized in order to achieve sustainable health equity (Abbo, 2011; Abdullahi, 2011; Hillenbrand, 2006; Mkize, 2009). In a foreword to the work of Incayawar, Wintrob, and Bouchard (2009), Prince (2009, p.  ix) discussed his research and experience of practising psychiatry in colonial Nigeria in 1958, noting how the treatments offered by traditional healers in that country were as effective as those proposed by the colonial biomedical health care system. He further alluded to the fact that African herbalists were treating their patients with herbs like Rauwolfia vomitoria, which has tranquilizing effects similar to those of psychotropic medications. Prince interacted closely with one healer who had travelled as far as England in 1925 to treat a Nigerian official with psychosis (p. xii). This was long before chlorpromazine, one of the first psychotropic medications, was introduced into Western medicine. Prince regretted the opportunities lost by Western doctors when they simply ignored African healers and labelled them “witch-doctors” and

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“primitives,” rather than collaborating with them for mutual benefit. Other forms of remedies for mental disorders that are employed by healers include, but are not limited to, family therapies, psychotherapies in different forms, and even psychosurgery, as practised by the Kisii ethnic group in Kenya, to treat neurological and mental illnesses (Mbwayo, Ndetei, Mutiso, & Khasakhala, 2013). In Tanzania, in their study of East African folk psychotherapy, Rappaport and Dent (1979) pointed out that the traditional psychotherapeutic techniques used by Tanzanian healers could be more effective than Western psychotherapeutic methods. Efforts have been made in the past in some African countries to mainstream traditional and alternative treatments alongside modern medicine. However, this mainstreaming has had no great success owing to the existing governmental and institutional structures embedded in a colonial system and the hostility of the Western-trained professionals described earlier in this chapter, who feel superior to their traditional counterparts (Abbo, 2011; Abdullahi, 2011; Hillenbrand, 2006; Nevin, 2006). Meanwhile, the current push for global mental health will further alienate traditional healers because it takes a biomedically oriented and top-down approach and is backed by powerful forces, primarily from Western countries (Summerfield, 2008). Nevertheless, most rural Africans are still disposed towards their Indigenous forms of treatment. During my eight years of nursing practice in rural Kenya, I seldom saw individuals with mental health issues at the health facilities. The majority of the locals preferred to consult traditional healers. For this reason, Africa needs to address psychosocial issues in its own way, taking into account historical and colonial issues, as well as current socio-cultural and political dynamics, in order to achieve a sustainable and culturally appropriate form of care that indigenizes, decriminalizes, and de-stigmatizes mental health. Mental Health Research in Africa Mental health research in Africa has remained minimal and entirely biomedical thanks to the lack of human and financial resources, the total absence of traditional health experts in the formal health care system, and the fact that, in cases of exploring traditional medicine, African researchers, who are Western trained, face conceptual and methodological challenges and/or dilemmas when attempting to understand systems that operate from a non-Western epistemological and ontological paradigm (Amer & Ahmed, 2012).

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Most African countries spend less than 5 per cent of their health budget on mental health, which has had a negative impact on the expansion of this field (Mkize, 2009). However, one of the few and promising projects is the African Health Care System based at the Nelson Mandela School of Medicine, Kwazulu-Natal University, in South Africa. The project aims to bring African traditional and Western health care systems together and enhance research, education, and training by integrating the two paradigms or fostering collaboration between them (Mkize, 2009). This is in line with the South African government’s attempt to bring traditional medicine on a par with its biomedical counterpart by enacting an act of parliament to legitimize and eventually regulate the sector (Nevin, 2006). Another notable centre that is expanding research on African health care systems is the African Mental Health Foundation, based in Nairobi, Kenya, which is conducting extensive research within the larger Eastern and Great Lakes regions of Africa (AMHF, 2012). From a global perspective the continent has seen increased research activity, albeit still minimal, in the past five years, chiefly due to the current global mental health campaign and the role of international aid organizations. Since the publication in 2004 of the Global Burden of Disease by the WHO, which placed mental illness as a leading cause of mortality and morbidity, there have been concerted efforts to increase treatments, especially in developing countries (WHO, 2008). These efforts have led to increases in funding from major donors, primarily based in the Western world, with Canada leading the way in providing big money for research through Grand Challenges Canada. Since its inception in 2010, this funding body has provided over twenty-five million dollars to thirty-five projects in lowand lower-middle-income countries as a response to the global burden of disease (Grand Challenges Canada, 2013). Grand Challenges Canada is open to bold and innovative ideas and as a result has funded projects that address human rights abuse in public psychiatric units and hospitals in the state of Gujarat, India; another project, in Kenya, explored collaboration between traditional and biomedical health systems. When evaluating the contribution of these positive steps, however, it is important to recall the vital role of traditional medicine as it is still practised in Africa. As the study by Abbo (2011) has shown, there is already at least one traditional healer in every village in Uganda, or one for every two hundred people across the continent. This statistic stands in stark contrast to the severe shortage of Western-trained professionals, who are far scarcer, thus making the strengthening of the traditional system more realistic, economically affordable, and sustainable in the long run.

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The Role of Mental Health Users’ and Survivors’ Associations in Shaping Mental Health in Africa Change is in the wind, thanks to the synergy created by the United Nations Convention on the Rights of Persons with Disabilities, the emergence of mental health consumer organizations, and the awareness created by global mental health campaigns. Of importance is the work currently undertaken by PANUSP and affiliate groups, who are resisting the status quo and engaging civil societies, governments, citizens, and the media to educate, to illuminate the gross human rights abuses taking place, and to work with relevant stakeholders in addressing policy and legal frameworks that perpetuate such violations (PANUSP, 2011). Of course, the development of psychiatric users’ and survivors’ associations on the continent cannot be understood without taking a broader look at the history and development of liberation movements in Africa during colonial times and at the student associations, trade unions, and political and religious groups that have played significant roles in the decolonization process (Webster, 2007). However, it is striking that, despite the power and the breadth of these movements, the voices of people who have been psychiatrized have been absent until very recently, through the establishment of PANUSP and its affiliates in a few countries (PANUSP, 2011). Meghan Vaughan, a historian and critic of colonial psychiatry (cited by Edgar & Sapire, 2000), spoke accurately to this situation when she said, “For the most part … the voices of the mad cannot be heard by us at all. Historians of Africa search constantly for the authentic ‘African voice’ in the colonial archives and find it hard to uncover. Hearing the authentic voice of the mad African in written documentation really does involve straining the ears” (pp. ix–x). But those voices are finally being heard, loud and clear, not from archives but from real people, breathing and shouting for their rights and place in African societies. Their premier organization, PANUSP, formed in 2005, is the first independent political movement for persons with psychosocial disability in Africa (PANUSP, 2011). The history of psychiatric users’ associations dates back to the late 1960s and early 1970s, especially in the context of the Western world, but they are a fairly new phenomenon in the African continent. Specifically, PANUSP was inspired by the World Network of Users and Survivors of Psychiatry, headquartered in Denmark (PANUSP, 2011). In the mid-2000s PANUSP and its affiliate members played an active role as part of the global disability networks in drafting the UN Convention

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on the Rights of Persons with Disabilities (United Nations, 2006, art. 18). The convention was adopted by the United Nations General Assembly on 13 December 2006 and is heralded as the single most important human rights treaty of the twenty-first century. It is considered a landmark in reframing the needs and concerns of those living with disabilities with respect to human rights, and it represents an overarching human rights framework that broadly and specifically addresses issues of discrimination, torture, social and economic justice, access to health, and education for the largest minority in the world: the disabled community (Kayess & French, 2008). Specifically, regarding those living with psychosocial disabilities, the convention declares that disability is not an individual medical tragedy but rather an evolving concept and a social phenomenon that arises due to the interaction between persons with impairments and the attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others. Solutions, therefore, lie in addressing those barriers. The accord is also clear about individual consent to treatments and the avoidance of harmful, torturous, and degrading treatments of persons living with disabilities (or any other persons, for that matter) (Minkowitz, 2007). The convention obligates governments around the world to uphold the dignity and human rights of all people with disabilities. Today PANUSP is a nascent and emerging political and social force with representatives in nine African countries (and it is still growing). It embraces a human rights– based approach as a foundation and a tool for advocacy and development. The network functions as a mouthpiece for under-represented and stigmatized persons at all levels of African societies (PANUSP, 2011). Although the organization is still young, with limited resources and membership in only nine of the fifty-three African countries, its input in terms of policy and advocacy is already being felt locally, regionally, and globally. On the international front PANUSP is actively collaborating with the World Network of Users and Survivors of Psychiatry and other global allies in providing a strong voice for persons with psychosocial disabilities and in campaigning for the ratification at the global level of the UN Convention on the Rights of Persons with Disabilities (Robb, 2012). In the local and regional African context, PANUSP is bringing much-needed fresh ideas to a sector that has remained largely unchanged since colonial times and in which mental health professionals have been the sole voice for those with lived experience (PANUSP, 2011). Guided by the convention and with a core focus on human rights and social justice, the organization is calling for a change in policies and practices around mental health and for a shift away from a biomedical paradigm.

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Specifically, PANUSP’s use of psychosocial disability discourse aims to address the socio-economic exclusion, stigma, and human rights abuses that have dogged the sector since colonial times. In an attempt to redefine and decolonize mental health practices, PANUSP is calling for the elimination of mental health legislation across the continent, terming the Acts punitive, colonial, and unnecessary. Through PANUSP, multiple voices are demanding mental health policy and services that democratize mental health. They also question the legitimacy of biomedicine as the de facto voice for those with psychosocial disabilities (PANUSP, 2011). Owing to the active role of PANUSP and its affiliated disability networks in addressing human rights abuses, the continent has seen increased media coverage on this issue in the last five years. Of note are the award-winning documentaries Locked Up and Forgotten (by CNN), about the ill treatment of psychiatric patients in Kenya’s notorious Mathari Mental Health Hospital, and Condemned, a short documentary by independent journalist Robin Hammond about the plight of mentally ill individuals in psychiatric hospitals, penitentiaries, and homes in several African countries. Both films graphically attest to the abuses taking place in psychiatric and penitentiary institutions (Hammond, 2010; McKenzie, 2011). In response to CNN’s documentary, the Kenya National Commission on Human Rights audited the country’s mental health system from a human rights perspective. In its final audit, Silenced Minds: The Systemic Neglect of the Mental Health System in Kenya, the commission decried the archaic and colonial nature of the institutions, and the country’s lack of mental health policy, which is partly responsible for the current sorry state. The audit further called on the government to address these failings by employing a human rights framework (KNCHR, 2011). Changes to colonial mental health Acts are taking place in some countries thanks to the advocacy of users’ and survivors’ agencies, as in Zambia where the Mental Health Users Network of Zambia succeeded, with the support of other disability and civil rights movements, in repealing the colonial Mental Health Act of 1951, which had basically encouraged and legalized violence against those perceived as having or living with mental illness. The network is currently working with the Zambian Ministry of Health and other stakeholders to draft new mental health legislation based on human rights, better treatment, and social inclusion, a huge achievement for a nascent organization (Power International, 2013). Such encouraging developments are slowly being felt in some parts of the continent where the voices and opinions of those with lived experiences are heard and appreciated. The Kenyan chapter of Users and Survivors of Psychiatry

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(USP) is currently collaborating with local and international human rights organizations and disability networks to provide civic education on human rights, capacity building, and a platform for those with lived experience of mental illness. They are also actively involved in advocacy, engaging the legislature on laws and bills that are of concern, and in monitoring any activities that are detrimental to the well-being of those with psychosocial disabilities (USP Kenya, 2013). However, the liberation journey is not without challenges as evidenced in the case of Nigeria, where the Mental Health Bill (2003) failed to garner enough support in parliament. Nigeria, the most populous African country, still maintains the colonial Lunacy Act of 1958 (Westbrook, 2011). Importantly, PANUSP has made a strong political statement by linking the historical nature of colonial psychiatry and the current global mental health campaigns in an attempt to politicize and reframe the psychosocial debate away from an individualized, pathological syndrome to a psychosocial disability discourse in order to address mental health from wider socio-economic and human rights perspectives. Likewise, the powerful statement “nothing about us without us” (Kayess & French, 2008, p. 4) proclaimed by disability advocates during the drafting and ratification of the UN Convention on the Rights of Persons with Disabilities, underscores the active role played by persons with psychosocial disabilities in charting and redefining a new progressive course for their well-being. PANUSP and other psychosocial disability networks in Africa have shown that they are up to the task of working collaboratively with stakeholders on the continent to address mental health appropriately from a socioeconomically informed, human rights framework to decolonize mental health policy, practice, and education.

NOTE 1 Psychosocial disability, as stated by the United Nations Convention on the Rights of Persons with Disabilities (United Nations, 2006, art. 18) and the World Network of Users and Survivors of Psychiatry (WNUSP), refers to those who live with mental, intellectual, or sensory impairments that in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others (Robb, 2012). In this chapter I will use the term psychosocial disability interchangeably with mental illness to characterize the status of psychiatric survivors and users of mental health or psychiatric services.

Mental Health in Africa  133 REFERENCES Abbo, C. (2011). Profiles and outcome of traditional healing practices for severe mental illnesses in two districts of Eastern Uganda. Global Health Action, 4, 1–15. Medline:21845144 http://dx.doi.org/10.3402/gha.v4i0.7117 Abdullahi, A.A. (2011). Trends and challenges of traditional medicine in Africa. African Journal of Traditional, Complementary, and Alternative Medicine, 8(5 Suppl),115–23. Medline:22754064 Africa Mental Health Foundation. (2012). Who we are. Retrieved from http:// www.africamentalhealthfoundation.org/about-amhf/ African Union. (2013). AU in a nutshell. Retrieved from http://www.au.int/en /about/nutshell Amer, M., & Ahmed, S. (2012). Counselling Muslims: Handbook of mental health issues and interventions. London: Routledge. Ataudo, E.S. (1985). Traditional medicine and biopsychosocial fulfillment in African health. Social Science & Medicine, 21(12), 1345–7. Medline:4095589 http://dx.doi.org/10.1016/0277-9536(85)90441-1 Bariga, S., (2013). Involuntary treatment: the invisible health care crisis. Retrieved from http://www.huffingtonpost.com/shantha-rau-barriga/involuntary -treatment-the_b_2812605.html Campbell, C. (2007). Race and empire: Eugenics in colonial Kenya. Manchester, UK: Manchester University Press. Carothers, J.C. (1970). The African mind in health and disease: A study in ethnopsychiatry. New York: Negro University Press. Edgar, R., & Sapire, H. (2000). The African apocalypse: The story of Nontetha Nkwenkwe; A twentieth-century South African prophet. Johannesburg: Witwatersrand University Press. Farah, I., Kiamba, S., & Mazongo, K. (2011). Major challenges facing Africa in the 21st century: A few provocative remarks. International Symposium on Cultural Diplomacy. Retrieved from http://www.culturaldiplomacy.org /academy/content/pdf/participant-papers/africa Fernando, S. (2011). A “global” mental health program or markets for big pharma? Open Mind Issue, 168, 22. Fisher, M., & Baum, F. (2010). The social determinants of mental health: Implica­ tions for research and health promotion. Australian and New Zealand Journal of Psychiatry, 44(12), 1057–63. Medline:20973623 http://dx.doi.org/10.3109 /00048674.2010.509311 Fournier, O. (2011). The status of mental health care in Ghana, West Africa, and signs of progress in the Greater Accra area. Berkeley Undergraduate Journal, 24(3).

134  Mohamed Ibrahim Grand Challenges Canada (2013). Global mental health: Integrated innovations to improve treatments and expand access to care. Retrieved from http://www .grandchallenges.ca Gureje, O., & Alem, A. (2000). Mental health policy development in Africa. Bulletin of the World Health Organization, 78(4), 475–82. Medline:10885166 Hammond, R. (2010). Condemned: Mental health in African countries in crisis. Retrieved from http://www.robinhammond.co.uk/category/video/ Hasian, M., Jr., (2013, September). The deployment of ethnographic sciences and psychological warfare during the suppression of the Mau Mau rebellion. Journal of Medical Humanities, 34(3), 329–45. Medline:23728849 http://dx.doi .org/10.1007/s10912-013-9236-6 Hillenbrand, E. (2006). Improving traditional-conventional medicine collaboration: Perspectives from Cameroonian traditional practitioners. Nordic Journal of African Studies, 15(1), 1–15. Human Rights Watch. (2012). “Like a death sentence”: Abuses against persons with mental disabilities in Ghana. Human Rights Watch. U.S.A. Ibrahim, M. (2014). Mental health in Kenya: Not yet uhuru. Disability and the Global South, 1(2), 393–400. Ibrahim, M., & Morrow, M. (2015). Weaning off colonial psychiatry in Kenya. Journal of Ethics in Mental Health, 1, 1–6. Jackson, L. (2005). Surfacing up: Psychiatry and social order in colonial Zimbabwe, 1908–1968. Ithaca, NY: Cornell University Press.. Jackson, V. (2001). Protected: In our own voice: African-American stories of oppression, survival and recovery from mental health systems. Retrieved from http://dulwichcentre.com.au/product/in-our-own-voice-african-american-stories -of-oppression-survival-and-recovery-in-mental-health-systems-vanessa-jackson/ James, B.O., Omoaregba, O.J., Igberase, O.O., & Olotu, S.O. (2009, December). Unmodified electroconvulsive therapy: Changes in knowledge and attitudes of Nigerian medical students. African Health Sciences, 9(4), 279–83. Medline: 21503182 Kayess, R., & French, P. (2008). Out of the darkness and into the light? Introducing the Convention on the Rights of Persons with Disabilities. Human Rights Law Review, 8(1), 1–34. http://dx.doi.org/10.1093/hrlr/ngm044 Keller, R. (2007). Colonial madness: Psychiatry in French North Africa. Chicago: University of Chicago Press. http://dx.doi.org/10.7208/ chicago/9780226429779.001.0001 Kenya National Commission on Human Rights (KNCHR). (2011). Silenced minds: The systemic neglect of the mental health system in Kenya. Retrieved from http://www.knchr.org/Publications/ThematicReports /EconomicSocialandCultural.aspx

Mental Health in Africa  135 Kirigia, J.M., Gbary, A.R., Muthuri, L.K., Nyoni, J., & Seddoh, A. (2006). The cost of health professionals’ brain drain in Kenya. BMC Health Services Research, 6(89), 1–10. Medline:16846492 http://dx.doi.org/10.1186/1472 -6963-6-89 Kreitzer, L. (2012). Social work in Africa. Calgary, AB: University of Calgary Press. Kubukeli, P.S. (1999). Traditional healing practice using medicinal herbs. Lancet, 354(Supplement 4), SIV24. Medline:10691435 http://dx.doi.org/10.1016/ S0140-6736(99)90367-7 Lewis, I. (2003). A modern history of the Somali: Nation and state in the horn of Africa. Athens, OH: Ohio University Press. Mahone, S., & Vaughan, M. (Eds.). (2007). Psychiatry and empire. London: Palgrave Macmillan. http://dx.doi.org/10.1057/9780230593244 Mbwayo, A.W., Ndetei, D.M., Mutiso, V., & Khasakhala, L.I. (2013, March). Traditional healers and provision of mental health services in cosmopolitan informal settlements in Nairobi, Kenya. African Journal of Psychiatry, 16(2), 134–40. Medline:23595533 McCulloch, J. (1995). Colonial psychiatry and “the African mind.” London: Cambridge University Press. http://dx.doi.org/10.1017/CBO9780511598548 McKenzie, D. (2011, February 25). Kenyan’s mentally ill locked up and forgotten. CNN World Untold Stories. Retrieved from http://www.cnn.com/2011/ WORLD/africa/02/25/kenya.forgotten.health/index.html Metzl, J. (2009). The protest psychosis: How schizophrenia became a Black disease. Boston: Beacon Press. Mills, C. (2013). Decolonizing global mental health: The psychiatrization of the majority world. London: Routledge. Minkowitz, T. (2007). United Nations Convention on the Rights of Persons with Disabilities and the right to be free from nonconsensual psychiatric interventions. Syracuse Journal of International Law and Commerce, 34, 405–28. Mkize, D. (2009). Bringing together indigenous and western medicine in South Africa. In M. Incayar, R. Wintrob, & L. Bouchard (Eds.), Psychiatrist and traditional healers: Unwitting partners in global mental health (pp. 207–14). West Sussex, UK: Wiley-Blackwell. http://dx.doi.org/10.1002/9780470741054 .ch16 Muiruri, M. (2011). Governments should guide citizens on Loliondo wonder. Retrieved from http://www.standardmedia.co.ke/?articleID=2000032522& story_title=governments-should-guide-citizens-on-loliondo-wonder Mwaniki, M. (2013). Patients escape from Mathari hospital. Retrieved from http:// www.nation.co.ke/news/Patients-escape-from-Mathari-hospital-/1056-1851600 -2c9fdvz/index.html

136  Mohamed Ibrahim Ndetei, D.M., & Szabo, C.P. (2011). Contemporary psychiatry in Africa: A review of theory, practice and research. Nairobi: Acrodile Pub. Ndura, E. (2006). Western education and African cultural identity in the Great Lakes region of Africa: A case of failed globalization. Peace and Change, 31(1), 90–101. http://dx.doi.org/10.1111/j.1468-0130.2006.00345.x Nevin, T. (2006). South Africa: Sangomas step out of the shadows. African Business Journal, 321, 44. Njenga, F. (2002, October). Focus on psychiatry in East Africa. British Journal of Psychiatry, 181(4), 354–9. Medline:12356672 http://dx.doi.org/10.1192 /bjp.181.4.354 Njenga, F.G., Nguithi, A.N., & Kang’ethe, R.N. (2006, February). War and mental disorders in Africa. World Psychiatry: Official Journal of the World Psychiatric Association (WPA), 5(1), 38–9. Medline:16757994 Olingo, A. (2013). Inside Kenya’s most depraved hospital. Retrieved from http:// www.nation.co.ke/news/Inside-Kenyas-most-depraved-hospital-/1056-1862090 -14194d1z/index.html Oyelere, R.U. (2007). Brain drain, waste or gain? What we know about the Kenyan case. Journal of Global Initiatives, 2(2), 113–29. Pan African Network for People with Psychosocial Disabilities (PANUSP). (2011). The history of Pan African Network for Persons with Psychosocial Disabilities. Retrieved from https://www.facebook.com/pg/PANPPD/about /?ref=page_internal Patel, V. (2011). Traditional healers for mental health care in Africa. Global Health Action, 4(00), 7956. Medline:21845145 http://dx.doi.org/10.3402 /gha.v4i0.7956 Patel, V., & Prince, M. (2010, 19 May). Global mental health: A new global health field comes of age. Journal of the American Medical Association, 303(19), 1976–7. Medline:20483977 http://dx.doi.org/10.1001/jama.2010.616 Power International. (2013). Breaking the poverty and disability circle. Retrieved from http://www.powerinternational.org/Human-Rights.html Prince, R.H. (2009). Foreword. In M. Incayawar, R. Wintrob, & L. Bouchard (Eds.), Psychiatrists and traditional healers: Unwitting partners in global mental health (pp. xi–xii). West Sussex UK: Wiley-Blackwell. Ramachandran, A. (2011). Faith healing in Tanzania. Journal of Global Health, 1, 1. Rappaport, H., & Dent, P.L. (1979, March). An analysis of contemporary East African folk psychotherapy. British Journal of Medical Psychology, 52(1), 49–54. Medline:486343 http://dx.doi.org/10.1111/j.2044-8341.1979.tb02493.x Robb, A. (2012). Towards strengthening the rights of persons with psychosocial disabilities in Africa. A publication of PANUSP, Cape Town, South

Mental Health in Africa  137 Africa. Retrieved from http://www.panusp.org/wp-content/uploads/2013/02 /Strengthening-the-Rights-of-People-with-Psychosocial-Disabilities-in-Africa .pdf Sadowsky, J. (1999). Imperial bedlam: Institution of madness in colonial South West Nigeria. Oakland: University of California Press. Summerfield, D. (2008, 3 May). How scientifically valid is the knowledge base of global mental health? British Medical Journal, 336(7651), 992–4. Medline:18456630 http://dx.doi.org/10.1136/bmj.39513.441030.AD United Nations. (2006, December). Convention on the Rights of Persons with Disabilities. Treaty Series, 2515, 3. Users and Survivors of Psychiatry, Kenya Chapter (USP Kenya). (2013). Studies on human rights violation of persons with psychosocial disabilities. Retrieved from https://www.scribd.com/document/199590360/USPKENYA-Reviewed -Human-Rights-Violation-Users-Mental-Health-Kenya-Report-2013 Vaughan, M. (1991). Curing their ills: Colonial power and African illness. Cambridge: Polity Press. Watters, E. (2011). Crazy like us: The globalization of the American psyche. New York: Free Press. Webster, E. (2007). Trade unions and political parties in Africa: New alliances, strategies and partnership. International Trade Union Corporation. Briefing papers. Retrieved from http://library.fes.de/pdf-files/iez/04961.pdf Westbrook, A.H. (2011). Mental health legislation and involuntary commitment in Nigeria: A call for reform. Washington University Global Studies Law Review, 10(2), 397–418. Retrieved from http://openscholarship.wustl.edu/ law_globalstudies/vol10/iss2/7 Whitaker, R. (2010). The anatomy of an epidemic: Magic bullet, psychiatric drugs, and the astonishing rise of mental illness in America. New York: Broadway Books. World Health Organization (WHO). (2008). [M]hGAP, Mental Health Gap Action Programme: Scaling up care for mental, neurological, and substance use disorders. Geneva: Author. World Health Organization (WHO). (2010). [M]hGAP, Mental Health Gap Action Program: Scaling up care for mental, neurological and substance use disorders. Geneva: Author.

5 Dancing with Complexity: Decolonization and Social Justice Dialogues r u by p e t e r s o n a n d s a b i n a c h at t e r j e e

Introduction In recent years much has been written about the destructive impacts of colonization and the need for decolonization in Canada. Rooted in resistance movements and taken up in academic circles, the meaning and work of decolonization has at times shifted uncomfortably between inspiration and appropriation. This chapter brings together the voices of Ruby, an Indigenous woman from the Kwakwaka’wakw Nation, and Sabina, a mixed (Indian / German) woman of colour, as we share our perspectives on decolonization in Canada. Our stories and teachings will demonstrate how we strive to uphold our cultural values and beliefs in our practice of community wellness, advocacy for social justice, and healing for marginalized people. We will show how the deep social justice components of decolonization can act to restore connection and respect in the areas of knowledge production, community wellness, and mental health practices, thereby restoring wholeness. This is significant because in Indigenous teachings wholeness is the foundation; there is an understanding that everything is connected (Hart, 2002; Kelm, 1998; Lane, Bopp, Bopp, Brown, & Elders, 1985). As Shiva writes, “human beings are part of Vasudhaiva Kutumkam or the earth family. As a part of the earth family, one participates in the democracy of all life” (Mies & Shiva, 1993, p. 265). We find wholeness in knowing that we are connected and “interact in harmony with [nature’s] rhythms and patterns, intellectually and emotionally” (p. 265). There is a strong correlation between honouring the decolonization of practice and praxis and having community wellness for all involved: “Connections emerge through acceptance, respect, understanding, love and compassion” (Marsh, 2010).

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We have chosen to write about decolonization as a complex dance in order to offer insight into the shifting roles that we take on as we strive to restore health and wellness to ourselves and to our practices as community members, social service providers, colleagues, and scholars. To us, working together has truly been like dancing. Knowing when to follow one another’s lead, when to find a rhythm to which we can both move in our dialogues and in our long-distance collaborations, and when it is time to dance individually has been an amazing part of this process. Both of us come from traditions of storytelling through dance and know the power that is held in the embodiment of complex history through sacred movement. Grief, trauma, hopefulness, and celebration are held in our stories, in our bodies, hearts, and minds. We are sharing our stories of how we stay committed to social justice advocacy and the continued creation of safe or safer spaces for people to speak of the history of pain and injustice. We offer the ways in which we maintain our own mental health and motivation while effecting change in structurally violent silencing systems. By sharing these stories we aim to inspire hope and determination for many more to speak up and be supported in their efforts to ensure that active participation in decolonization and social justice is always a part of academic and community health and wellness practices. As part of our process we are choosing to use language that may differ at times from a Western academic style, and we have instead chosen to speak in ways that hold home for ourselves in our stories. By sharing stories in this way we are recentring our own knowing and experiences and offering them to our loved ones who are also on this journey. Who do we mean by “our loved ones”? We certainly do not mean only those who are known to us in this moment. These stories are shared for other Indigenous and racialized people who are also finding their way and their voices within the challenging work and amazing possibilities of decolonization. Holding in our hearts the people for whom – and to whom – we are writing this chapter has helped give it a far more personal shape and meaning for us and has provided its own profound healing even as we write. What do we mean by decolonization? We recognize that this term is used in many different ways. According to Waziyatawin (2008), “colonization, by its very nature, is antithetical to justice. Therefore, complete decolonization is a necessary end goal in a peaceful and just society. This would entail overturning the institutions, systems, and ideologies of colonialism that continue to affect every aspect of Indigenous life. In a nutshell, we all must rethink our ways of being and interacting in this world to create a

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sustainable, healthy, and peaceful coexistence with one another and with the natural world” (p. 13). Decolonization has been understood as bringing about “the repatriation of Indigenous land and life; it is not a metaphor for other things we want to do to improve our societies and schools” (Tuck & Yang, 2012, p. 1). In this way Tuck and Yang remind us of the danger of dilution and misuse of the word decolonization. Decolonization is an act of understanding the layers of losses ranging from land to language and culture to place and purpose in the world (Brown, McPherson, Peterson, Newman, & Cranmer, 2012). It is knowing the value of one’s own soul, feeling the resonance, and learning to listen to it again. It is the reclaiming of trusting our knowing. Tuck and Yang emphasize that decolonization truly should not be understood or used as a metaphor to depoliticize and minimize the systemic change needed, because to do so comes at immense cost to all. We encourage readers of this chapter to hold this framing of decolonization in mind. Decolonization must involve changing systems to make space for all knowing. It makes room for understanding wellness as the connection between all things, not just the relationship connections between human beings (Lane et al., 1985, p. 26). It means intentionally remembering and restoring the teachings on the way to be in relationship with all of life, which is sacred (Duran, 2012) Decolonization is complex, holding many nuances of being and understanding. This chapter is written from the perspective that prior to colonization we all lived with a wisdom of sacred reverence to the interconnectedness of all life (Lane et al., 1985), and in balance and harmony with all the elements (air, earth, fire, water, and ether). In Hinduism these are referred to as the Pancha Mahabhutas, or five great elements, that hold the interconnectedness of all of life (though this needs to be troubled, given the larger structures of caste that permeate Hinduism)1. These teachings of natural law are present in all our ancient cultures (Duran, 2000, 2006, 2012). They are woven into many values and daily practices of First Nations’ culture, traditions, and relations in Canada because colonization here is only hundreds of years old – younger than in most other parts of the world. Pre-colonial wisdom is still present in Indigenous songs, dances, and traditional languages. In this chapter we explore the ways in which we can call on this knowing to address issues of mental health and social justice and actively contribute to decolonization, with the intention of reconnecting our bodies and minds to our spirits and hearts (Archibald, 2008; Duran, 2000, 2006; Duran & Firehammer, 2017; Kelm, 1998).

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Located in the traditional lands of the First Peoples of Canada, we both feel the need to centre our stories within this land-based context. The repatriation of lands and the honouring of Indigenous history, cultures, and peoples must be at the centre of how we work for change, and this is where the complexity resides. This does not mean erasing other stories. This means laying our stories bare and being mindful of our variously situated histories and relationships to colonization. We all come from different backgrounds. For the First Peoples of Canada the land has continued to hold our stories since time immemorial. For those of us who are nonIndigenous the roots of our hearts stretch back elsewhere; some of us are the first generation of our families to be born here, others’ stories may reach back generations, while still others have only just arrived. Some of us know so much about our histories and families, and others have histories that have been buried deeply under colonization, enslavement, warfare, and other forms of violence. For those of us who are not Indigenous to this land there is an inherent responsibility to honour the knowledge, resilience, and claims to sovereignty of Canada’s First Peoples. Whether we are Indigenous or we or our ancestors came here by force or by choice, or some combination thereof, each of us holds within us stories of what it means to be here in this colonized land. Ruby’s understanding of decolonizing practices comes from years of lived experience, education, and research. Having a personal stake in understanding, she has asked many questions to understand the individual, family, and community story of colonization and intergenerational trauma. She also researched Indigenous traditional knowledge for healing teachings and practices (Marshall, Peterson, Coverdale, Etzel, & McFarland, 2014). This was not always popular in her workplaces or academic environments. She experienced ostracism, minimization, and sometimes outright hostility for questioning or challenging Western notions of counselling theories and practice. There were times when her professionalism and abilities were brought into question. She was banned from properties for speaking up about historically damaging systemic policies that are still played out in systems today. However, she is not the first to experience this. In a foreword to Freire (2004), Donald Marcedo identifies how Ann Berthoff denounces Friere’s ideas, saying that he “went on and on about pedagogy of the oppressed, without a clue about the role of dialogue” (p. xiv). Ruby also recalls conversations within the academic environment minimizing as “controversial” the writing of Indigenous psychologist Eduardo Duran on post-colonial psychology and decolonizing practices.

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During her graduate studies in the University of Victoria’s Aboriginal Community Counselling Program Ruby engaged in specific efforts to develop her decolonizing practices, learning, and research. With the guidance of teachers she and her cohort established a means of Indigenous-centred learning (ICL) and ways to incorporate traditional knowledge into counselling practice (Marshall et al., 2014), developing their Indigenous and cultural lens to critically examine Western theories and their usefulness in Indigenous communities. They began identifying which Western approaches correlated with Indigenous culture and wellness, and as an intentional act of decolonization Ruby “married” these Western theories with Indigenous traditional knowledge to develop a culturally appropriate counselling model.2 “We learned to intuitively connect to our traditional knowledge. We were challenged to embrace a sacred learning process, where we call on more than just our thinking knowledge to learn, using our heart and spirit knowledge as well. This became the foundational learning” (Ruby, in discussion with Sabina, July 2013). As a woman of mixed race and the daughter of immigrants to Canada, Sabina has worked to ensure that she and other community service providers, activists, students, and scholars trouble the systemic and structural normalization of colonization. Through more than twenty years of community service provision and thirty years of activism, it has become clear that challenging ourselves to disrupt colonial narratives and systems through our own reflective and reflexive work, and changing how we learn and understand the history of this country, is central to the work of decolonization. Decolonization must be at the centre of everything we do. Many of us come from traditions of balancing thought, spirituality, and action. We must remind ourselves that this knowing is crucial when we commit to decolonization. To hold ourselves accountable and to continue to work for decolonizing change necessitates grounding ourselves in our own traditional teachings (and critiquing those teachings when they oppress others) so that we stop supporting and contributing to systems based on greed, violence, and genocide. These are guiding principles in Sabina’s work in community, activism, and scholarship. This chapter has been organized into three parts. In the first part we share a dialogue focused on why it feels important for us to write this together, what it means for our own well-being, and how our connection offers support for our work. In the second part we reflect on what draws us to this work by sharing some of our stories. Ruby explores the importance of reclaiming healing and community wellness in a way that honours and upholds the values and principles of Indigenous traditional knowledge and

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dedication to self-reflection and action. Sabina speaks to the responsibility of non-Indigenous racialized people to hold themselves accountable – for how they benefit from and contribute to colonization – in order to truly engage in decolonization and social justice. Her reflective piece includes some insights from community-of-practice discussions held with other people of colour who were exploring the ways in which they actively contributed to decolonization. Finally, in the third part we share a second dialogue in which we explore what is at stake for individuals and communities who are engaged in decolonization. Knowing that what we believe has an impact on how or what we do, we invite readers to reflect on how they decolonize their values and beliefs and to re-search what they know. Thank you for joining us on this journey. Gilaks’la / Dhonnobad (We share one breath / Thank you). Part 1 The work of creating social change can be isolating and emotionally difficult. As we implied in the introduction, committing to decolonization and social justice has often resulted in confrontation3 – open or covert – or dismissive reactions. The work of decolonization and social justice thus requires great strength and resolve. When we first met, we instantly recognized the common intersections within our work and began supporting each other. This support has often felt like a lifeline. We hope that by sharing some of our stories about how we strengthened our own mental health by creating a mutual support system, we will bring to light the need for creating safety and community when doing the work of decolonization and social justice in the academic community and in organizational settings.

Ruby My ancestry includes ‘Namgis, Kwagiutl, Katzie, and Mohawk on my mother’s side and Irish on my father’s. I was raised in the ‘Namgis traditions and territory of Alert Bay, British Columbia. My work is centred in Indigenous knowledge and focuses largely on the healing of grief, trauma, and abuse, through counselling and community wellness. For me, the purpose of research is to learn how to make space for incorporating sacred work into my practice. My work developed from my own healing and learning, which all began when I came to understand the depths of wounding that the residential schools and Canada’s assimilation policy have had, and still have, on me, my family, my community, and the people of Canada. This

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knowledge led me to keep searching deeper, to seek healing. As I learned, I began to see a disconnection in the counselling methodologies and healing for Indigenous people. Digging further, I began to focus on understanding the ways in which Indigenous cultural teachings could help. As I learned, I shared, with the intentional goal of giving space and valid voice to Indigenous traditional knowledge. In the metaphor taught to me by two of my Elders and teachers, Wa’ta (Christine Joseph) and Larry Emerson, traditional knowledge became the foundation for housing4 the knowledge, values, and beliefs that I carry within myself and into my life and work. In my learning and experience I hold the intention of bringing in the voices of the teachings that were in place for Indigenous people prior to colonization, from the location of my own Kwakwaka’wakw teachings.5

Sabina I am a woman of colour whose parents are Bengali and Bavarian. I was born in the traditional lands of the Anishinaabe, Haudenosaunee, and Huron-Wendat peoples. As the daughter of immigrants, I have been very aware of the complex space of being a woman who benefits from colonization, whose parents came to Canada believing it to be a country in which their mixed-race children could live free of judgment and harassment, and of the responsibility of actively participating in decolonization, which has been woven into my social justice activism and my academic research. My own navigation of discrimination and inequity based on gender, orientation, race, and ability has resulted in a clear commitment to research and community-development initiatives that respect and value the lived experiences of people who have been multiply marginalized and minoritized. I have spent much of my adult life exploring the true meaning of solidarity within social justice movements. This is especially important as we navigate the different moments or positions of privilege that we have within colonization. As non-Indigenous people, we must work intentionally and intensively to support and contribute to decolonization. We cannot challenge structural violence and create substantive change without addressing the deeply embedded and destructive impact of colonization on every aspect of education, public policy, and community-service provision. For this reason, I am strongly committed to contributing to decolonization in my actions, community work, and public scholarship.6 Throughout this chapter the term settlers, when used to refer to people of colour or to racialized people, is used tenuously, as a place holder, because it is a term that does not fully convey our diverse relationships

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to colonization as well as the specifically anti-Black, white-supremacist frameworks that are an inherent part of settler colonialism. As will be seen in the chapter, these relationships are subject to continuing communitybased discussions. The work of decolonization continues to grow and will always require new ways of articulating the diversity of our connections and relationships to colonization.

Developing Connection for Our Own Well-Being In the past few years we have found renewed strength from working together. Through that strength we have been able to speak more confidently about burning issues, especially in environments where these conversations are not welcome. In preparation for writing this chapter, we recorded some of our conversations during the summer of 2013. The following dialogue holds our reflections on what it was like to connect in this work. RUBY: Both of us share a passion for really looking at the trauma in our

communities and its connection to structures and colonization. That’s what made us go “yeah!” when we first met – we have been advocating­ for being able to tell the story within the context of our history and our environment. SABINA: I think that we share a real desire to work respectfully and tirelessly for change. That means that we have had to be strong. We have been truth seekers and truth speakers in hard environments. We tried to work with intentionality and integrity. And we have shared the stories we have longed to hear, stories about hopefulness, courage, and truth telling. RUBY: I think the other thing we share is that sense of learning by teaching. We have embraced the challenges of making space for a different voice. We are coming from different places, but we both made a promise somewhere along the way in our lives to step up and hold space for voices that are often silenced.

Stories and Complexity Our dialogue led to discussion of the complexity that life holds and, specifically, that we hold in opening awareness in ourselves and in the world around us. SABINA: One of the real joys in working with you is that there is a deep

understanding of complexity – not as an inconvenience but as the part

146  Ruby Peterson and Sabina Chatterjee of every story and every person that makes them shine. It is a strength and a necessity. I have really appreciated talking with you about what happens when that complexity is simplified, erased, silenced. RUBY: And the pain of that. SABINA: And the violence that happens when our identities are torn apart within other people’s sense making. RUBY: Or are dismantled. SABINA: When people don’t live with lots of complexity, or they cannot identify it in themselves, it makes our stories and experiences seem to be something that they want to control to understand. RUBY: We all walk with a lot of complexity – depth of knowing ourselves, and the purpose and gifts they hold – but not everyone is awake to it. It is about a deeper awareness that requires us to slow down and listen not just with our mind. This deeper awareness can scare people sometimes, and they feel uncomfortable.

Being Silenced, and Self-Doubt The minimizing and doubt of our knowledge deeply affects us. SABINA: If we have to silence parts of ourselves, it deeply affects the work

we can do. It affects how we can breathe together. It affects our ability to be hopeful, and our mental health. And it certainly affects how we can respond to, plan for, and effect change. Silence and division are such powerful colonizing tools. It is heart-breaking when we are in places where people talk the talk of decolonization or intersectionality but don’t seem to understand systemic violence and how they actively contribute to it – as if it is only something that exists in theory or is removed from their own privilege or complicity. It is important to be aware of how much space I take up, and the difference between taking up space and holding space. RUBY: That feels like a really core piece of the work that is being done here – that lifelong commitment to reclaim space for our voices, and knowing when to hold spaces open so others who would not otherwise claim their place can feel they have a right to be heard, seen, acknowledged, and accepted as valid.

Grounding Our Work SABINA: It is so important to recognize how people hold space differently.

We believe that there is abundance, and we try to avoid a model of

Decolonization and Social Justice Dialogues  147 scarcity and competition. Being able to connect with one another has helped to strengthen our commitment to do things differently – even when we have met huge resistance from others. The work of service provision, activism, and working for change in our communities needs to be filled with joy and hopefulness. RUBY: And a little bit of fun! And that creativity for holding sacred space for us to have meaningful connection goes beyond the mind. It goes to the soul, to our spirit, to our physical wellness and integrates all of who we are, not just our mental health.

Self-Reflection and Accountability SABINA: We must understand that there is much more to mental health

and wellness than what is captured by a Western medical model. Having people see us, truly see us, without having our spirits or selves erased or silenced is a deep part of this work. As a person of colour, it is essential to be aware of the space I take up when working for change, and to think deeply about my own position, what influences my actions and opinions, and how my social interactions are constructed. As someone who is affected by colonization very differently than someone who is Indigenous, the work in contributing to decolonization that is most appropriate for me to do is that of an ally – to listen and support a vision of how things can change, and what needs to be challenged, and to find ways to come to action that do not subvert or take leadership away from Indigenous people. We cannot simply claim to be allies and expect people to welcome us and place their trust in us.7 We must earn it through our actions, by proving that we are committed and that we are holding ourselves accountable, especially through challenging and changing big, overriding systems. RUBY: How I understand decolonization practice is best said by Axu Alfred: “What is it that we have lost? It is that which we need to restore” ­(community discussion, n.d.). As colonized people we have forgotten many cultural teachings and meaningful connections, and with it our confidence, our voices, and our place in the wheel of life.8 These things we must restore. It is my intention to create safe, sacred space for us to learn and grow these gifts and abilities and to “remember to remember” the teachings that are within our culture, language, songs and dances, and bring it forward to be relevant for loved ones in today’s world. SABINA: How I understand my role in decolonization is based on key ­issues: we are uninvited people on stolen land; we have benefited and continue to benefit from the genocide and violence inherent in both

148  Ruby Peterson and Sabina Chatterjee historic and ongoing colonization; Indigenous sovereignty must be realized; and we bear a responsibility to participate in the dismantling of colonial s­ ystems while respecting, acknowledging, and never displacing Indigenous leadership. RUBY: One of the other pieces that is really important for us to acknowledge in this is the importance for us of how, in connecting with one another, we became one another’s allies. It really addressed the issue of isolation for both of us: to have a kindred spirit in the room, to know that you can speak and be heard by someone. SABINA: Neither of us is invested in being an “expert” – we certainly don’t have all the answers, but we certainly have some good questions to ask. RUBY: We may not be the experts, but neither do we need to invest in the idea that others are. Our voices need to be heard. That is the dance that we all need to be engaged in: seeing and honouring complexity, holding space, and speaking out. For you and me, the strength of our connection lies in our agreement that both the academic and the practical work of community and mental health services need to be further troubled to ­understand decolonization processes. It is well intended, some say, but the truth is that any effort to look deeper is met with resistance, because the reality is that being in a position of “helping” the less fortunate maintains the helper in the position of the more fortunate, a position of privilege. What would happen if we were to help from a position of naming the privilege and the social injustice of colonial policy? The “lesser” would be empowered. The powerful would have to share. It is easier to maintain the sense that a person is “broken” (a term I have heard numerous times in the field), and we are the ones to come in and fix them. Decolonization is to tell the story within the context of our history. A way to explain the normal and natural responses to systemic violence and trauma, and the brilliance of people who develop defence mechanisms to defend themselves from the crippling pain that soul wounds instil. This is a decolonized approach.

Support through Deep Meaningful Dialogue Great strength and well-being is gained when we connect with another person or group to have deep meaningful dialogue about the challenges, struggles, hopes, triumphs, and dreams that we all share. It reminds us that we are not alone, and it challenges us to stay in this place of deep soul searching and justice- and peace-making. When we use connection to help build ourselves up, to support one another, and not to tear one another

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down, we are able to find different ways of challenging and resisting structural and systemic violence. Part 2 In writing this chapter, we were very aware of all the languages and spaces we were navigating. We each speak from different spaces and in very different ways and still find great comfort, strength, and inspiration in one another’s stories. As we move into this section, we shift the focus to our individual work and stories and hope that each of our voices will be heard more clearly as a result.

Ruby Years of practice and research have helped me develop my skills to my present-day approach, which is centred in my Indigenous traditional knowledge. However, this drive to learn began with personal experience: visiting my grandmother and grandfather, picking berries, hearing stories by Elders, and attending many ceremonies. This vernacular learning has guided my life. It is one of the privileges of having been raised within my own cultural community. But it was not all loving and nice. I learned about poverty, violence, addiction, and the pain of shame for being Indigenous. And, like many, I experienced great shame about who I am. I left my community, with a vow to never return. I joined the military and travelled extensively, and I was living and working in Ontario when I learned about Indian residential schools. This was a time of intense unravelling of what I believed to be true.9 I grew up right across the street from St Michael’s Indian Residential School. I played in it and attended school there myself after it had closed and our ‘Namgis Nation re-opened its doors as a band school.10 However, it was the movie Where the Spirit Lives (Haldane & Jordan, 1989) that changed everything for me. I returned home to my family, my culture, and myself. I took a job at the U’mista Cultural Centre11 where they were presenting an exhibition about residential-school survivors. They had found hundreds of photographs of children whom they could not identify, so if anyone identified a child to us, we were asked to interview the person who recognized the child (in most cases these people had also attended the school or were a family member). During the exhibition I heard many painful stories. What haunted me was the theme of adult survivors saying that they did not know how to parent their children because they themselves had not had the parenting they had needed. Often

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we sat together, crying at the painful stories. Their stories and my own are the reason I do this work with passion and commitment today. There are many survivors of that residential school who went on to advocate for community healing, who worked in schools, prisons, and courthouses. They became teachers, leaders, and advocates. They showed me that one can have a wounded soul and still offer healing, and they taught me that there is great strength and healing in our culture. On 18 February 2015 the St Michael’s Indian Residential School in Alert Bay was torn down. It was not an easy process, and there were differing views about it (Kurbis, 2015). It brought up many painful memories, and emotions ran high once again throughout our community. The ones who attended the school and died in pain and suffering, those who attended and fought back to reclaim a good life, those who did not attend but feel the reverberations of the pain that ripples through our generations, and those who are still to come and will need the support to continue to heal from the devastating impact of a violent policy aimed at assimilating Indigenous people to “get rid of the Indian Problem” (Royal Commission on Aboriginal Peoples, 1996) – I pray your voices will be heard. It is also a reminder that we have not gone! We are not dead! We are alive and resilient, and our culture and teachings are still here. It is for this I speak, I walk, I advocate, with as much love and compassion – and ferocity when needed – that I am able. I know I am not the only one. I am one of many. And my prayerful intention in writing this is to offer the teaching of Galgalpotla (“hold one another up,” a word taught to me by Elder Peggy Svanvik). Our culture and teachings matter; it makes a difference when our loved ones reclaim our knowing. Having loved ones share with me has helped me immensely. I pray that more of us will reclaim our knowing and bring it into our everyday practices. Regardless of whether or not others understand it or find validity in what we do, we know that it is making a difference, and we must continue and support one another in this continuing. This is what I humbly offer in my life, my practice, and my writings as my commitment to decolonization. In the words of teacher Teresa Marsh (2010), “we need to feel connected to others in order to love, understand, grow, give, receive, and heal. Hence, my ancestors sat around that sacred fire in their healing circles with the knowledge that we are all connected to the hoop of life. On that hoop of life there is a place for everyone, enough for everyone, and healing for all. We need those circles. We need to connect at levels on which the spirit can be nourished and sustained” (p. xvi).

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If the antithesis of colonial trauma and violence is decolonization – through acts of re-integrating connection, peace, and harmony into our lives, families, communities, and structures – we need to reclaim the knowing that we had prior to colonization (Duran, 2006; Duran & Duran, 1995; Marshall et al., 2014; McCormick, 2009; Wilson, 2008). Therefore, it makes sense for us to actively engage in intersecting with Indigenous traditional knowledge in the advancement of health and wellness (Duran, 2006; Marshall et al., 2014; McCormick, 2009) because it offers the deep connection that we seek in our practice (Duran, 2012; Marsh, 2010). Today many of us are reclaiming this depth of knowing that spans the mind and moves into heart, body, and spirit. Still, as a student, researcher, and counsellor, I did not always know or understand how our Indigenous traditional knowledge fit into the vision of helping our loved ones heal and rejuvenate, and to learn it took tenacious research – academic, experiential, and vernacular (Marshall, Emerson, Williams, et. al., 2017). It is a journey that has not always been graceful, as I relearn the dance of complexity, of bringing our Indigenous traditional knowledge into modernity. This is my commitment to decolonization and social justice.

Sabina I cannot remember a time when I did not identify as an activist. Growing up in a house with two very different cultures, Indian (Bengali) and German (Bavarian), I learned that stories did not have to compete to be true; that is, the filters through which my parents, my siblings, and I saw the world could diverge greatly and yet still feel as though they held truth. I learned about the necessity of complexity. I am grateful to my parents for their prioritizing of travel to India and Germany to ensure that we formed strong connections to our families, histories, and cultures there, and for ensuring that we also travelled across Canada so that we developed a great appreciation and love of the country in which we were growing up. I am deeply indebted to the writings of Indigenous and racialized people, as well as some white12 settler scholars, about the responsibility that we all have in challenging and ending the ongoing colonization of this country. However, the discourse of settler responsibility in Canada focuses almost exclusively on white settlers, erasing the role of racialized settlers in both the continued colonization and the decolonization of Canada. Where, then, are the voices of people of colour within discussions of settler responsibility? How do we acknowledge our roles in colonial sense-making and the

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land theft, displacement, and disenfranchisement of Indigenous peoples? What work of social justice solidarity is necessary for people of colour to actively participate in and contribute to the work of decolonization? In some ways it has been “natural” for people of colour in Canada to be drawn to post-colonial theories as a way to contextualize and position themselves and their work within anti-racist frameworks in Canada. However, this positioning obscures the fact that colonization has not ceased in Canada, and it provides racialized settlers with a sense of commonality with Indigenous people that belies our role in, and complicity with, the Canadian colonial narrative. Linda Tuhiwai Smith (1999) wrote that decolonization must entail “taking apart the story, revealing underlying texts, and giving voice to things that are often known intuitively” (p. 3). We too need to take apart the stories of immigration and human rights protection that have helped shape, explain, and, ultimately, depoliticize racialized settler identities in Canada. Lawrence and Dua (2005) posit that, instead of challenging colonization, Canadian anti-racist theory and action have actually reinforced colonial agendas and practices. By focusing on common and shared experiences of racism, anti-racist frameworks have unintentionally created spaces in which those commonalities overshadow the ways in which people of colour benefit from colonization. This has served the colonial narrative well because it relies on an assumption that history starts with us/our immigration or arrival, which negates the history, the prior claim to land and citizenship, and the very existence of Indigenous peoples. The division and ruling of minoritized and marginalized people is a common mechanism of the colonial agenda. In fact, a key aspect of the ongoing colonization of Canada is the way in which racialized people have had to compete and distance themselves from other communities – especially those treated most poorly by white settlers – in order to survive. Chazan et al. (2011) posit that “in Canada, particularly, multiculturalism is itself a politics of settlement – a story tied closely to the appropriation and settlement of space and meaning, and to securing the material and symbolic contours of the state” (p. 1). The 1969 White Paper articulated clearly that the policies of the P.E. Trudeau government were meant to assimilate Indigenous people and render them “just another chip in the [Canadian] cultural mosaic” (Miller, 2004, p. 258). Our own resistance to assimilation should not lead us to believe that it is the same as the forced assimilation of Indigenous people. Rather, it should make us fully aware of the need to speak out against this assimilation, to see how our identities have been

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shaped in relation to both white settlers and Indigenous peoples, and to work for change. As Walia (2012) writes, “being responsible for decolonization can require us to locate ourselves within the context of colonization in complicated ways, often as simultaneously oppressed and complicit.” Too often, common experiences of poverty, racist attack, and marginalization have resulted in a “bifurcated consciousness” (Wollford, as cited in Regan, 2010), in which settlers of colour have spoken out about our own oppressions while not recognizing or articulating our participation, in turn, in colonial mandates that should be abhorrent to us. Settlers of colour cannot afford to linger in a liminal space of complacency in not being white, nor can we allow our own experiences of racism and social exclusion to suggest that we are not also implicitly responsible for continued colonization and colonial violence in Canada. As Tuck and Yang (2012) have written, “there are white settlers and brown settlers, and peoples in both groups make moves to innocence that attempt to deny and deflect their own complicity in settler colonialism” (p. 10). Whether within activism, the academy, or the ongoing work of social justice solidarity and decolonization, we must find ways to disrupt, challenge, and change the stories, legislation, and policies that hold colonization so firmly in place in Canada. c o l l a b o r at i v e i n q u i ry

I have been able to engage in collaborative inquiry with people whose lived experience of marginalization helped bring diverse perspectives to the discussion group: Indigenous people; people of colour; lesbian, gay, bisexual, trans, intersex, queer, two-spirited (LGBTIQ2S) people; and people whose lives hold other complexities. The purpose of these discussions was to explore the ways in which people enact a practice of active decolonization and to create a space in which we could talk about social justice solidarity and decolonization. For the purposes of this chapter I will focus on reflections about the discussions that were specifically organized for people of colour (who were also/always carrying complex stories of other marginalizations into the conversations). The people who shared their stories within these gatherings were amazing and brought unique insights into anti-oppressive community development, and scholarship. Slam poets, truck drivers, sex workers, therapists, academics, crisis support workers, artists, labour organizers, teachers, or combinations thereof – each participated deeply in our discussions. We explored

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what it means to be or to need an ally, and how, as a result of interlocking oppressions, people have experienced both situations, sometimes simultaneously. There was such fierce joy in coming together. It was clear that discussions like these are a necessary, albeit rare, part of our work. Some of our discussions have explored the following questions: How do we, as racialized people, lay our stories bare while being mindful of our different histories, struggles, and relationships to colonization and enslavement? How do we understand our stories in the context of settler colonialism? Settler logics and violence affect us all in different ways – especially given the connections between colonization and anti-Black racism. How do we honour our different standpoints, stories, and struggles as we contribute to decolonization?13 By sharing space and stories and breathing together (conspiring) we can create the foundations for profoundly important work. The work we do as individuals is strengthened by holding one another to a high measure of compassion, accountability, and action. But what does this high measure look like? Through collaborative inquiry and ongoing community conversations, the following are some of the key issues that keep emerging for racialized people engaged in decolonization. We must not usurp Indigenous leadership.  If there are leadership positions in organizations and movements that should be filled by Indigenous people, we should choose not to apply for them. If the positions are not filled, it may be useful to explore why that might be. We know how crucial this kind of support has been for us; we must hold ourselves to an even higher standard because of that knowing. This is how change can happen, and how solidarity can take shape. We are not owed gratitude or acknowledgment for simply doing what is right. We know this but must remember to live it too. We must not compare our own stories with Indigenous peoples’ stories of struggle, survival, and resistance. Comparisons, even when offered as commonalities, often serve to silence and diminish the voice of the speaker. Instead it is important to listen to the stories and honour the sharing. This can be difficult because we are taught to make sense of things in dialogue. There may be times when the sharing back and forth of stories is valuable and enriching, but it is important to be mindful that it is not always warranted or welcomed. We must examine our own stories. To do that, we must neither deny our histories nor only focus, teach, or gather around assumed commonalities. We must recognize that we are deeply complicit in colonization and are not free to turn away and claim that our own suffering erases that complicity.

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We must find ways to hold our own struggles and histories without diminishing or minimizing those of Indigenous peoples. Decolonization must be at the centre of every activist movement – whether it be focused on women’s rights to safety, LGBTQ2S community rights, environmental protection, or labour reform. In doing so, we will hopefully be far more effective in challenging structural and systemic violence. We must find hopefulness, joy, and inspiration. We must talk with people, learn more, reflect, and then find more hopefulness, joy, and inspiration so that we can keep doing this important work. Part 3 This final section is structured as a dialogue to show how we hear, interpret, and honour our different approaches to a similar passion. We present what is at stake in engaging decolonization and social justice, the challenges of systemic violence, and the need to participate in challenging these systems. RUBY : As an Indigenous woman, I have been given teachings that remind

us that we all have gifts to offer this world and that we are here for a purpose. We are part of a greater circle; to exclude anyone weakens our community. Our values are communal – we are part of a far greater experience, and our connectedness is what gives life meaning; and everyone’s gifts are valuable. These principles guide my life and practice. It is my responsibility to honour these teachings by sharing them. Our traditional knowledge is closely tied to the wellness of our communities. As Indigenous people, we have endured deep intergenerational wounding from colonial policies and practices. The violence of being told we are not professional when we incorporate sacred ceremony into our work with community is profound. I have witnessed highly respected community members being humiliated in ­public by service providers, and upon reporting these actions, I was ostracized in my workplace for demanding accountability. We watch ­helplessly while our loved ones die from addiction, abuse, and violence on themselves or others; we see health wane due to poverty and overcrowding. I have fought, become tired, felt my spirit drained, and even begun to question my own knowledge while bringing this voice to community organizations and academic structures and to people within my own practice as a counsellor. This is the effect of structural violence that colonial oppression has created. I have been ostracized, excluded, labelled a “trouble-maker,” and minimized as not understanding the system

156  Ruby Peterson and Sabina Chatterjee or process of “how things are done.” Many times I have had to withdraw in order to rejuvenate and re-evaluate who I am and what I am willing to do. Today I pray that this chapter will inspire others like us, we who are working towards social justice from a decolonizing and an empowering approach, to understand that they are not alone and that there are ways we can care for ourselves and each other in this process. For me, social justice is all about taking action when loved ones ask for help or when glaring injustice is taking place. In this work there is a time for being a warrior and a time for being a healer, and while my gift is largely as nurturer, there certainly are times when it is crucial for me to take a warrior stance; it is a part of each one’s journey to figure out her or his own balance in these two roles. Today I spend less time convincing others to practise decolonization and am learning, for my own well-being, to lead more by example. I had to stop asking others to do this work, and I just do what I can, taking guidance directly from the community I serve. I have stepped aside so that other warriors can step forward. SABINA: For me, social justice has always been rooted in responsibility, accountability, and compassion. When I was growing up, there was a poster on my wall that read “Silence = Complicity.” I think that was one of the biggest teachings for me. If I don’t speak out, then I am saying it’s okay. If there is injustice, we have to speak out and act, otherwise we are causing harm. Social justice has to be a part of what we do. For me, that means foregrounding compassion. When I work with people in service provision or community facilitation, I really challenge myself to hear their stories. That means being aware of what my own filters emphasize, and resisting the urge to make assumptions, so I can truly listen to what they are sharing. RUBY: These are the teachings, and sometimes we just pick them up. This one time I saw this necklace, and all it said on it was “Inspire.” I made a commitment to wear that every day for a year, and I wore it to remind myself that that was what I was intending to do – inspire myself and others. Through simply noticing a little one or a loved one who is walking with their head down, I made a point to acknowledge them by saying hello, so they look up to see the world around them and experience being seen and acknowledged by another. T. Richard Baker, who is Haida and Squamish, taught me a Haida saying that means “I feel you, hear you, sense you, my loved one.” I embody these words by really being present when engaging children – including my own – to pass on the teaching. SABINA : That was one of the big things in working with street-involved youth – that if we didn’t know their names, some of them would go for weeks

Decolonization and Social Justice Dialogues  157 and weeks without having anyone actually use their names. So often we render people invisible, especially in times of deep trauma and crisis. It is interesting because I use that quite a bit, the “I see you.” And when I feel that people can see me, not just one tiny part of me, but actually see me, that’s an entirely different sense of belonging or sense of being loved. RUBY: That is wholistic healing. To be seen in the wholeness of who we are – in all our beauty, our grace, our ugliness, our fear – because we are never only one thing. We are this magnificent compilation of complexity. SABINA : So often in service provision the way we ask people for information, or offer issue-specific support, splinters people. We only look at one piece or another. We do that with substance use, with mental health, and with people’s stories. We decide what parts of their healing need to come first. Because of rules that are imposed, people have to leave big parts of their stories – themselves – at the door. For me, part of having dignity and integrity as a service provider means being able to say, “Come. All of your stories are important to us. You don’t have to tell us. You don’t have to bleed in front of us. But if you want to be here, then we will do our very best to see and support you.” RUBY: Recently my colleagues and I were talking about how people won’t come into counselling unless they are doing badly. But who says they can only come in then? I would love it if they felt they could come in singing and dancing and sharing a good day! SABINA : We end up caught in reactive crisis-based service provision. If we treat support the way we treat eating –if good options are there all of the time – we can grow strong in our hearts and our bodies and our spirits. Shouldn’t we have support in celebration and hopefulness? Shouldn’t that be there in the same way that it would if we were crying and our hearts were breaking? I think that is part of resilience. RUBY: This speaks to having to silence the Indigenous traditional knowledge we bring. Our medicine bundle is a metaphor for this – having to bring our half-selves when we enter the room because all of who we are cannot be acknowledged by Western ideologies. And to put down our bundles – our gifts – so we go in naked and bleeding to be validated as one who is deserving of support. The same thing comes with education. We have to put down our Indigenous traditional knowledge to step in and learn this Western notion of what health and wellness is. In order to learn from these Western concepts of counselling or health, we have to take an “expert” role, lest we be considered simplistic or unprofessional. But this just doesn’t fit with our teachings. It just doesn’t fit!

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bodies and minds. The whole colonizing structure is held in place by brutally violent systems that have been intent on genocide. The “science of the mind” hasn’t been around for that long and is used as a tool for control, to silence and punish difference. It is easy for people in power to silence others by saying, “You are not being good enough,” or, “You are being too simplistic.” Years ago I spent time with my family in India, and I interviewed women who had been involved in three different waves of political and social action – the independence movement, the Naxalite movement, and the modern political movement. I explored the role of music as an entry point to activism. When I handed in my paper, my professor questioned the fact that I hadn’t referenced Foucault, rendering all of my references from Indian feminist theorists less valid than the writings of a French (white, male) theorist. Often professors cling so deeply to their idea of who the experts and knowledge holders are that they completely dismiss most of the world’s knowing. RUBY: Unless you are quoting Freud and Rogers and all of these popular mental health “experts,” your work is devalued. Indigenous traditional knowledge that we walk with and speak about – this medicine bundle – it is thousands of years old. Not 150 but thousands of years old! At what point do we stop trying to convince somebody of the obvious and just follow our knowing? That is the social activism that I am engaging in now, and it is easier on my sense of well-being at all levels. I am seeing the results within our community engagement. SABINA : I think that is how we have to keep doing the work. The work is hard and can be daunting. Lots of people will yell at us when we speak. So we must have soft spaces to land, where there are folks who will hold us accountable and also inspire us to keep learning. RUBY: Yes, rather than silencing us. SABINA : Even if we don’t do the same work, I believe we can create those softer spaces where we can be hopeful and honour one another’s resilience, and figure out new ways of doing things together. We must find ways to acknowledge the hard, heart-breaking pieces and also find inspiration and joy. It calls to mind the Buddhist teaching “No mud, no lotus”14 – beauty comes as a result of hard work, and there needs to be balance. RUBY: We have a lot of words to explain a small part of the complex dance that we call life. Perhaps that is why our Elders remind us that we have two ears and one mouth, and we were purposefully built that way. No one of us (or two, for that matter) can offer all the complexities. We are simply offering some deeper ways to consider how we all share space,

Decolonization and Social Justice Dialogues  159 and our intention is for us to ask ourselves to be open to how we honour diversity of knowledge. This is part of the process of decolonization. It is not always easy. How do we resist using colonizing words and actions to shame and silence those we do not agree with? Elder Willie Walkus would remind me to give a silent prayer of blessing and remove myself from the violent mind frame when respectful dialogue is not obtained. I did not understand it at first, but as time went on I came to understand the importance of knowing where to put our energy, and that not everyone has to be a warrior all the time. SABINA : Often it feels like there is too much at stake when we do not speak. We need to consider the costs of speaking and not speaking, and follow that wisdom. RUBY: There is silence built into the systems that are not meeting the needs of our loved ones. While we cannot give details because of the nature of our work, the result of systemic violence is increased addiction, suicide attempts and completions, sexual assaults, domestic violence. Many people do not get support because they do not have a connection to the Western notion of mental health. These are normal trauma-based responses – how can people be expected to trust the systems and institutions that have been at the root of their trauma? Connection, community, voice, confidence – these are the things that need to be rebuilt. This is the practice of decolonization. Communities need to have the difficult conversations to let go of the oppressive models that continue to hurt and silence. Why are we still encouraged to speak softly by our Elders and teachers? There is a conflict of practice here. How can we reconcile the teachings of Ikilan (to walk gently with all things of life) when our very teachings are treated with disdain or as dead, meant only for the museum, to be viewed from a distance and romanticized. On the one hand, we want to scream from the rooftops, “We are not dead! Our culture, values, and beliefs are still alive!” On the other hand, to follow our teachings, we Galgalpotla (hold one another up). How do we decolonize ourselves when to hold space means that we need to be at odds with Western philosophy? Yet by degrading, minimizing, or otherwise belittling Westernized philosophical structures that denigrate our way of knowing, we also engage in the same colonial framework to which Duran and Duran (1995, p. 176) refer. But how do we uphold and give blessings to ones who render invalid our ways of knowing?

This is why it is a dance of complexity –there are no easy, cut-and-dry answers. There are ways of resisting and refusing that stay centred in

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colonial frameworks, cutting criticizing and silencing, and there are ways of centring and grounding in our own ways that honour the holding up. If we choose the latter, we can be warriors and healers at the same time. It is the resistance on Western terms that perpetuates colonial frameworks. Resisting on our own terms creates opportunities for us to grow and nurture and build new possibilities. Final Words (for Now) As we have said, there are no easy, cut-and-dry answers. Perhaps that is the best note on which to close this chapter. Both of us feel as though we could write so much more about this. However, we will save those stories for other days to come. We have learned and gained so much from each other, and we hope that this chapter has spoken to our readers in some way and that it may deepen their commitment to their role in decolonization, and to caring for themselves and seeking support as they do this work. Our stories and our work have different focus points to address the issues of decolonization and social justice in Canada. These differences are necessary and needed. It is an important factor in dancing with complexity, and we honour this in each other. It is important to recognize that many people have been advocating for hundreds of years against colonial oppression and will continue to do so. We are not alone. And it is normal and natural for us to feel that the progress is too slow. We see our loved ones suffering from the ongoing violence of colonization, and we see its resistance to hearing our voices, but we are still here, still doing what we set out to do. Although the process of tearing down St Michael’s Indian Residential School in Alert Bay, British Columbia, began in February 2015, the process of healing will be ongoing for generations to come. May the voices of the existing survivors be heard. We must not allow history to be covered up again and again. We must redefine, regenerate, and recentre ourselves by re-searching our own stories and practices as a part of our healing. We cannot allow the violence and genocide of colonization to continue. We must do better than that – together. Ruby’s Dedication: I dedicate my work to my teachers and knowledge keepers; my husband, Wayne Peterson; my children, Cedarus, Sophia, Xaydan, and Autumn (I pray the voice of this writing will continue through your hearts, minds, and spirits – you are my Gwa’layu [reason for living]); the many survivors of residential schools who have entrusted me with their stories; my family who walk this earth with their stories still; and my loved ones no longer here, especially my mom, Granny, and Grandpa, whose

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stories still live in me. And this is dedicated to our children still to come … your voices matter, my loved ones. Sabina’s Dedication: I dedicate my work to the people who work tirelessly to create change, to listen and honour and learn, and whose fierce hearts inspire us to dig deeper and be stronger.

NOTES 1 While many teachings within Hinduism have been important to consider, it is necessary to be critical of the casteism and the anti-Indigenous and anti-Black racism embedded in some Hindu institutions, practices, and beliefs. 2 Rather than competing on which “house” of thought was more legitimate than the other, we were encouraged to explore the possibility of developing a third neutral “house” where each view can be welcomed equally. 3 Open confrontation has included comments like “Get over it, it was a long time ago!”; and outright hostile outbursts by someone in a group saying that a speaker who talks about being oppressed in a public setting, such as a meeting or a conference, is oppressing other people. Such statements are silencing and diminish the efforts to honour diverse engagement. Our work and our employment have been challenged, and we have faced emotional, physical, and verbal violence. 4 Housing my values and practice means looking at everything from the teachings that come from this “house” of traditional knowledge, rather than from the “house” of Western theories to see if Indigenous traditional knowledge can fit. It was no longer an afterthought, but a central premise. 5 I have learned about decolonization from a combination of academic learning from people like Paulo Friere, bell hooks, Gregory Cajete, Vine DeLoria Jr., Mary-Ellen Kelm, Lee Maracle, Jo-Ann Archibald, and Eduardo Duran, and of learning from Elders and teachers of my own community and from other Indigenous nations, such as Mary McQuillen (Makah), Wa’ta Joseph (Kwagiutl), Willie Walkus (Gwa’Sala ‘Nakwakda’xw), Larry Emerson (Navajo), Teresa Marsh (South African), Gloria King (Beausoleil Ojibway), Ed Loutit (Cree), and ‘Namgis teachers Wedlidi Speck, Al West, Eva Dick, Arthur Dick, Pewi Alfred, and Vera Newman, who have carried knowledge forward. Not all of these individuals, who are my teachers, will be quoted here. 6 I am deeply indebted to the writers, theorists, and activists whose words have created possibilities, foundations, and a sense of home for me. From the scholarship and writing of Anzaldúa, Moraga, Friere, Maracle, Spivak, Bhabha, Hall, Smith, Mohanty, Dua, Lawrence, Tuck, Yang, Simpson,

162  Ruby Peterson and Sabina Chatterjee Ahmed, and others; to the youth and staff at Change Now, Inner City/Youth Skills Zone, and antidote – Multiracial and Indigenous Girls and Women’s Network; to my family (chosen and blood); and to Amanda Engen, Ruby Peterson, Claude Boulanger, Johl Ringuette, and Harshita Yalamarty – I am grateful for the ways in which your strength and words deepen my understanding of and commitment to decolonization. 7 We have experienced the disconcerting and offensive ways in which people have demanded that we “accept” them as “allies,” saying that we should be “grateful” for any support they give to us, even when they are committing violence and silencing us. 8 Teacher Eva Dick talks about the fact that each of us, like a spoke in a wheel, has an important role: if one is missing, the wheel is weakened (personal discussion, November 2010). 9 Elders, friends, and teachers at the Barrie Native Friendship Centre, I will always be grateful for your loving kindness. 10 Our present-day T’lisalagi’lakw school started in the St Michael’s Residential School building. 11 Kwakwaka’wakw museum and cultural centre, www.umista.ca 12 The decision to use a lower case w in white is one that we have made as a part of our ongoing, always-unfolding decolonial dialogues and practices – especially around race, naming, and the power embedded in words. The socially constructed language of race and privilege is seldom questioned until a shift is made. This shift into lower case w is to create awareness of how this is accepted without question. Our hope is that this small act will encourage deeper reflection about the power of language in the process of decolonization. 13 These questions were co-written by Sabina Chatterjee, Maïmouna YounglaiCase, Harshita Yalamarty, and Sayaka Yajima during the Laying Our Stories Bare project in 2014–15. 14 As Thich Nhat Hanh (2010) says, “we are making life more beautiful and meaningful because of the power of understanding and compassion in us” (p. 86). REFERENCES Archibald, J. (2008). Indigenous storywork: Educating the heart, mind, body, and spirit. Vancouver: UBC Press. Brown, H.J., McPherson, G., Peterson, R., Newman, V., & Cranmer, B. (2012). Our land, our language: Connecting dispossession and health equity in an Indigenous context. Canadian Journal of Nursing Research, 44(2), 44–63. PubMed:22894006

Decolonization and Social Justice Dialogues  163 Chazan, M., Helps, L., Stanley, A., & Thakkar, S. (2011). Home and native land: Unsettling multiculturalism in Canada. Toronto: Between the Lines. Duran, E. (2000). Buddha in redface. USA: Writers Club Press. Duran, E. (2006). Healing the soul wound: Counselling with American Indians and other native peoples. New York: Teachers College Press. Duran, E. (2012). Historical Trauma Research Seminar, New Zealand. Retrieved from http://mediacentre.maramatanga.ac.nz/content/historical-trauma -research-seminar-dr-eduardo-duran Duran, E., & Duran, B. (1995). Native American postcolonial psychology. Albany: State University of New York Press. Duran, E., & Firehammer, J. (2017). Injury where blood does not flow. In S.L. Stewart, R. Modley, & A. Hyatt (Eds), Indigenous cultures and mental health counselling (pp. 107–24). New York: Routledge. Freire, P. (2004). Pedagogy of indignation. Boulder, CO: Paradigm Publishers. Haldane, H., & Jordan, E. (Producers), Pittman, B. (Director). (1989). Where the spirit lives [Motion picture]. Canada: CBC. Hart, M.A. (2002). Seeking mino-pimatisiwin: An Aboriginal approach to helping. Halifax: Fernwood Publishing. Kelm, M. (1998). Colonizing bodies. Vancouver: UBC Press. Kurbis, G. (Reporter). (2015, 28 January). CTV. http://vancouverisland.ctvnews .ca/mobile/video?clipId=540658&binId=1.1180928&playlistPageNum=1 Lane, P., Bopp, J., Bopp, M., Brown, L., & Elders. (1985). The sacred tree. Lethbridge, Alta: Lotus Press. Lawrence, B., & Dua, E. (2005). Decolonizing antiracism. Social Justice (San Francisco, Calif.), 32(4), 120–43. Marsh, T.N. (2010). Enlightenment is letting go: Healing from trauma, addiction and multiple loss. Bloomington, IN: Authorhouse. Marshall, A., Emerson, L., Williams, L., Antoine, A., MacDougall, C., & Peterson, R. (2017). A'tola'nw: Indigenous-centred learning in a counselling graduate program. In S.L. Stewart, R. Moodley, & A. Hyatt (Eds.), Indigenous cultures and mental health counselling: Four directions for integration with counselling psychology (pp. 182–98). New York: Routledge. Marshall, A., Peterson, R., Coverdale, J., Etzel, S., & McFarland, N. (2014). Learning and living community-based research: Graduate student collaborations in Aboriginal communities. In C. Etmanski, B. Hall, & T. Dawson (Eds.), Learning and teaching community-based research: Linking pedagogy to practice (pp. 206–25). Toronto: University of Toronto Press. McCormick, R. (2009). Aboriginal approaches to counselling. In L. Kirmayer & G. Valaskakis (Eds.), Healing traditions: The mental health of Aboriginal peoples in Canada (pp. 337–54). Vancouver: UBC Press.

164  Ruby Peterson and Sabina Chatterjee Mies, M., & Shiva, V. (1993). Ecofeminism. Halifax, NS: Fernwood Publishing. Miller, J. (2004). Lethal legacy: Current Native controversies in Canada. Toronto: McClelland & Stewart. Nhat Hanh, Thich. (2010). Together we are one: Offering our diversity, celebrating our connection. Berkeley, CA: Parallax Press. Regan, P. (2010). Unsettling the settler within: Indian residential schools, truth telling, and reconciliation in Canada. Vancouver: UBC Press. Royal Commission on Aboriginal Peoples. (1996). Final report. Vol. 1. Looking forward looking back. Ottawa: Supply and Services Canada. Smith, L.T. (1999). Decolonizing methodologies: Research and Indigenous Peoples. London and New York: Zed Books. Tuck, E., & Yang, K.W. (2012). Decolonization is not a metaphor. Decolonization, 1(1), 1–40. Retrieved from decolonization.org/index.php/des/article /download/18630/15554 Walia, H. (2012). Decolonizing together: Moving beyond a politics of solidarity toward a practice of decolonization. Briarpatch Magazine. Retrieved from http://briarpatchmagazine.com/articles/view/decolonizing-together Waziyatawin. (2008). What does justice look like? The struggle for liberation in Dakota homeland. St Paul, MN: Living Justice Press. Wilson, S. (2008). Research is ceremony: Indigenous research methods. Black Point, NS: Fernwood Publishing.

6 Melq’ilwiye (Coming Together): Re-imagining Mental Health for Urban Indigenous Youth through Intersections of Identity, Sovereignty, and Resistance n ata l i e c l a r k , pat r i c k wa lt o n , j u l i e d r o l e t , ta r a t r i b u t e , g e o r g i a j u l e s , ta l i c i a m a i n , and mike arnouse

Introduction Melq’ilwiye is a Secwepemc word that means “coming together.” Our work together began with a story told by Secwepemc Elder, knowledge keeper, and co-author Mike Arnouse, who assisted and guided our Indigenous participatory action research project: It was mainly my uncle Tommy who told me about a journey that was the message to young kids going out on a journey in their life. It was like a person was walking through the woods, and he really has to look at everything from tiniest creatures to bright-coloured plants, whether they are medicinal or beautiful, and stop and look at them – especially the landmarks. You have to go around and look at everything – keep the picture in your mind and your own story of what you seen – but that sometimes takes a lot of work – your mind, heart, body, and spirit … So sit down and find a comfortable place on a rock and rest and look back at what you have just seen as you walked on the path, and when you have rested enough, you can get up and go again and continue to do the same thing. Because if you don’t do that – to look back where you came from and to remember all the landmarks in your life – you get lost and you lose the vision of your goal. It’s a short little story that means a whole great deal. My uncle told me that one time when I was tired and whining away, and he told me that story … “Make some tea,” he said, “and sit down and visit with me.” When I was rested, I was laughing and on my way again. It was so easy when I would get stuck I could go … [to] uncle. I have to rely on my memory now and my own trail.

The story provided a template and guide for our work, which attempts to decolonize and centre Indigenous research and writing with and for

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Indigenous communities. It reminds us to take time to consider both where we have come from – in this case, the real harm and violence that have been done through past research conducted in and on Indigenous communities – and where we are going. Our goal is to centre Indigenous research and ethics in our work together. Our work together began in 2009 and took the form of an Indigenous, community-based exploratory study with two aims: to determine how urban Indigenous youth in Kamloops identify their health needs, including mental health needs, within a culturally centred and holistic model of health and wellness; and to create new knowledge and research capacity by and with urban Indigenous youth and urban Indigenous health care providers. The project was intended to address the need, identified by the National Association of Friendship Centres (NAFC), for more effective ways to promote health among urban Indigenous youth. It also addressed the recommendation of the Senate Standing Committee on Aboriginal Peoples (2003) to promote “urban First Nations health research initiatives that could provide valuable information on the needs, experiences and priorities of First Nations youth living in urban centres under a First Nations controlled design” (p. 3). The research took place in the interior region of British Columbia through a partnership between the Kamloops Aboriginal Friendship Society (formerly the Interior Indian Friendship Society) and Thompson Rivers University, both of which are located on the unceded and traditional territories of the Secwepemc peoples in Tk’emlúps, the city of Kamloops. Our research team comprised Elders, Indigenous youth, community partners, Indigenous faculty, and allies for this particular project. The Kamloops Aboriginal Friendship Society is part of a network of 118 Friendship Centres in Canada and is a member of the NAFC. Friendship Centres are often the first point of contact and the primary providers of culturally enhanced programs and services to urban Indigenous people. As described by the NAFC, “For over half-a-century, Friendship Centres have been facilitating the transition of Indigenous people from rural, remote and reserve life to an urban environment” (NAFC, n.d.). The study contributes to decolonial and Indigenous mental health research through the creation of new narratives about the health and wellness of Indigenous youth within a holistic understanding of Indigenous health. By centring Indigenous ideas of health and wellness, the research acknowledges the importance for Indigenous youth of strong connections to their Indigenous lands, languages, and traditions, while also recognizing the spaces between which they move.

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Context Recent research offers a range of ways to view Indigenous health, from studies that locate health narrowly, defining it as the absence of disease (Devries, Free, Morison, & Saewyc, 2009; Kaufman et al., 2007; Perry & Hoffman, 2010); to more complex and holistic analyses of health, including social determinants frameworks (Mehrabadi et al., 2008); to collective health concepts that are Indigenous centred (Anderson, Smylie, Anderson, Sinclair, & Crengle, 2006; Burack, Blidner, Flores, & Fitch, 2007; Ungar, 2006). Holistic approaches to Indigenous health are decolonizing in and of themselves because they remind us that even our definition of health and the methodologies that flow from this are rooted in our worldview. Institutional racism and systemic racism in Canada negatively affect health, and studies demonstrate the need for increased research in this area to consider specific health determinants, the physiological health impacts of racism, and inadequate access to or isolation from health care (Anderson et al., 2006; Ungar, 2006; Veenstra, 2009; Wexler, 2006). Poverty, racism, violence, and assimilation pressures all contribute to the increased vulnerability of urban Indigenous children and youth, as do the history of colonization and the subsequent colonialism that persists to this day (Justice Institute of British Columbia, 2002, 2006).1 Many studies have identified disproportionately severe mental health challenges for Indigenous youth (British Columbia Children’s Commission, 1999; McCreary Centre Society, 2005; Saewye et al., 2008). However, much of the research does not place the issues within the context of colonization and ongoing colonialism or within a strengths-based and Indigenous youth–centred understanding of Indigenous youth health. As part of our team’s commitment to decolonizing research we sought to resist these narratives of risk – what Indigenous scholar Eve Tuck (2009) calls “damagecentred” research. Thus, in our writing and research we avoid the replication and centring of these statistics because within mental health policy there is a great danger that “framing the problem purely in terms of mental health issues may deflect attention from the large scale, and, to some extent, continuing assault on the identity and continuity of whole peoples” (Kirmayer, Brass, & Tait, 2000, p. 597). To truly create Indigenous and decolonial mental health policy, then, practice and research must begin with a recognition that Indigenous health and mental health are often framed and addressed through health programs and interventions that are based on Western value systems that serve to further colonize and pathologize Indigenous youth and their bodies

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(Clark, 2016). A focus on mental health as an individual health problem prevents and obscures a more critical, historically situated focus on social problems within the context of a neocolonial state that contributes to mental health issues. There is widespread recognition, within both Indigenous and non-Indigenous critical scholarship, of the need for a radical re-visioning of theoretical and practical approaches to intervention and training in Indigenous mental health (Gone, 2010; Hart, 2010; Hill, Lau, & Sue, 2010). The current failure of Western models of intervention for Indigenous mental health and trauma – in spite of the additions of cultural competency, evidence-based practice, and trauma-informed care – has been well documented (Clark, 2016; Gone, 2008; Waldram, 2001).2 There is a need for research that centres the voices of Indigenous youth, supports Indigenous researchers who ground their work in Indigenous epistemologies, and resists the discourse and construction of Indigenous youth as “at risk.” The literature that does exist in this area indicates that healthiness among Indigenous youth is promoted by aspects of cultural continuity, such as cultural identity and pride, awareness of colonization and its influence on the present, the ability to speak one’s Indigenous language, and the sharing of a collective identity (Anderson et al., 2006; Chandler & Lalonde, 1998; Croll, Neumark-Sztainer, Story, & Ireland, 2002; Jacono & Jacono, 2008; Kaufman et al., 2007; Mehrabadi et al., 2008; Ungar, 2006; Wexler, 2006). Research has already established a link between life in reserve communities in which strong cultural components have been promoted, and positive mental health outcomes among Aboriginal youth, including decreased suicide (see Chandler & Lalonde, 1998). However, the link between cultural continuity, holistic health, and urban Indigenous youth health in smaller cities has not yet been examined. In Kamloops, the site of the present study, nearly half (48 per cent) of the Indigenous population in 2006 was under the age of twenty-five, compared to 32 per cent of the non-Aboriginal population (Statistics Canada, 2010). Cultural strength, identity, and pride, in particular, have been found to be protective of health among rural youth (Clark & Hunt, 2011; Smith, Leadbeater, & Clark, 2010). This type of health promotion includes developing a politicized identity, developing resistance, engaging in social action against discrimination, and building knowledge about the impact of colonization (Chandler & Lalonde, 1998; Croll et al., 2002; Ungar, 2006). Many studies point to the need for specific health promotion strategies for youth that centre Indigenous culture and wisdom. They also indicate a need for Nation-specific and culturally specific health strategies, such as having Elders teach youth, involving family members, focusing on interdependence,

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and using culturally based Indigenous community research to develop health intervention and prevention strategies and culturally safe health services (Anderson et al., 2006; Chansonneuve, 2006; Clark & Hunt, 2011; Majumdar, Chambers, & Roberts, 2004; Steenbeek, 2004; Teufel-Shone, Siyuja, Watahomigie, & Irwin, 2006). The present research project used an Indigenous intersectional framework (Clark et al., 2013) that shifted the focus away from the individual as the problem towards assisting Indigenous youth in understanding and locating their “mental health” and coping abilities as responses to larger structural and systemic forces, including racism, poverty, sexism, colonialism, and a culture of violence and trauma. This type of research also centres the voices and experiences of Indigenous youth as co-researchers and knowledge keepers. One of the two Indigenous youth peer researchers described interest in the role as follows: “Being an urban Aboriginal youth, I could relate to how they would feel and how we could engage other urban Aboriginal youth. I thought it was a great idea to have youth representatives on the team. It was easier for us to explain the questions to the youth. It was easier for us to engage the other youth. I have sat on many youth councils related to health. I always wanted to be a youth advocate and put a youth view and ideas onto projects like this.” The other youth peer researcher also described her experience: “Very educational! Being a part of the project helped me to grow many strengths through interviewing others, putting myself out there in the community, and learning to work and be accountable. It also helped with my self-­ confidence, and it was really interesting to learn about different aspects of various youth. It also expanded my view on how we can help others through research and focus group conversations. Presenting the findings in Toronto at the conference made me feel proud and helped me to know that I am valued and that I can make a difference for my Aboriginal people.” These researchers are not alone in viewing the project as a means of connection and growth. The team was altogether less focused on discussions of illness and disease and more interested in holistic health and centring the voices and experiences of Indigenous youth in part by recognizing the impact of colonialism. This shift in focus is crucial; it is by definition decolonial. The study thus contributes to Indigenous research and to the decolonizing of mental health research in that it resists the narratives of dis(ease) put forth through neocolonial research paradigms; instead it considers past and current forms of colonization. “The rusty cage may be broken,” writes Taiaiake Alfred (1999), “but a new chain has been strung around the neck” (p. xiii). Indigenous and decolonial scholarship is

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necessary because it can theorize not only historical forces of colonialism but also current forces. Examples of ongoing colonialism can be found in the research and the discourse about Indigenous youth mental health that construct narratives of disease and risk, are not based in the strengths and resistance of Indigenous cultures and peoples, and do not recognize the diversity of Indigenous youth. Many Indigenous scholars acknowledge that a theory is needed for the multiplicity of indigeneity that has emerged from colonization – Métis, full-blood, half-blood, and community member (Ermine, Sinclair, & Jeffery, 2004; Grande, 2004, 2008; Simpson, 2003). Intersectionality is a conceptual framework that is often cited as arising out of the lives and resistance of Black feminist and lesbian activists (Combahee River Collective, 1983). However, since colonization, there has been a long history of Indigenous women activists who have written about the impact of the intersections of colonialism, capitalism, and gender on children, youth, and communities (Clark, 2016; Hopkins, 1883/1994; Zitkala Sa, 2003). The term intersectionality was coined by the critical race scholar Kimberlé Crenshaw (1989) to describe the oppression that is structurally produced and simultaneously experienced and resisted individually and collectively through and across diverse social categories of identity. To Indigenous peoples, however, intersectionality is not a new concept. Prior to colonization many Indigenous communities had strong matrilineal traditions, multiple categories of gender, and holistic understandings of and approaches to health (Clark, 2016; Clark et al., 2013; Yee, 2009). There is increasing recognition that the concept of intersectionality “complements growing discussions about the complexity and multiplicities involved in being Indigenous, in the category of indigeneity, and in Indigenous people’s health and well-being” (De Leeuw & Greenwood, 2011, p. 54). While many studies with Indigenous and urban youth may consider one axis of difference, such as gender, most leave unexamined other key aspects of identity, such as age, place, and class. An Indigenous intersectional lens facilitates the decolonization of mental health research, policy, and practice through the recognition of the diversity of Indigenous youth and the examination of issues that affect youth, including dichotomous Western notions of urban-rural and male-female (Clark, 2012). With regard to place, the health literature has increasingly focused on Indigenous youth in large cities (MacKay, 2005). However, few studies have adopted an intersectional framework or acknowledged the health impacts of the multiple intersecting factors that address space, place, or location in a small city, and still fewer utilize an Indigenous intersectional, community-based, participatory action approach (see de Finney, 2014, 2010). Indigenous scholar

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Sandrina de Finney, in her research with Indigenous girls in Victoria, British Columbia, describes how Indigenous “girls’ everyday acts of presence – avoiding, protecting, contesting, laughing, hoping, dreaming, connecting, documenting, imagining, challenging – are not singular, simplistic examples of rational agency; they are messy, contradictory, inherently diverse” (2014, p. 11). De Finney’s work demonstrates that the decolonizing of our research requires resistance to Western notions of place and, instead, the centring of the voices and experiences of Indigenous children and youth. The present study was conducted by an intersectional research team (Clark & Hunt, 2011) comprising Indigenous youth and Elders; Indigenous community practitioners, who participated through a partnership with the Kamloops Aboriginal Friendship Society; Aboriginal health leaders from the Interior Health Authority; and Indigenous and non-Indigenous university researchers. Intersectional research teams chose to create research spaces that asked about everyone’s agenda in doing the work and utilized all of the different knowledges in the room (Clark, Hunt, Jules, & Good, 2010). Through this process we were able to resist research questions focused on risk, in favour of Indigenous and decolonial questions. As a group the team developed four research questions: (1) Which cultural components are linked to the health needs of urban Indigenous youth? (2) Will the identified Indigenous cultural components differ by the intersection of factors such as gender, ability to speak one’s Indigenous language, knowledge and practice of Indigenous ceremonies and healing approaches, and type of school attended (high school, alternative school, university)? (3) What are the holistic health priorities identified by urban Indigenous youth in meeting their health and wellness needs? (4) What supports do Indigenous students and the Indigenous community need to facilitate their health? Additional Theoretical Framing This exploratory study was guided by an Indigenous research paradigm, which focuses on relationships and accountability to these relationships (Aluli-Myer, 2008; Kovach, 2009; Wilson, 2008). It was also guided by the concept of looking in one direction, a term provided to us by our Secwepemc Elder Mike Arnouse and by Vicki Michaud, a Secwepemc communitybased researcher from the Friendship Centre to remind us that we will do good work if we are all looking in one direction – in this case, the direction of healthy outcomes for our children and youth and the next seven generations. Furthermore, while building on the knowledge and wisdom

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of the youth and Elders who were involved in the project and who shared a commitment with us to all look the same way, the study placed urban Indigenous youth in a central role as peer researchers and collaborators. Moreover, this project observed Indigenous ethics and guiding principles (Alderman, Balla, Blackstock, & Khanna, 2006; Smith, 2001) and used a checklist (see appendix 6.1) developed by Natalie Clark and Sarah Hunt that reflects a number of ethical guidelines, including human rights; the four R’s – respect, relevance, reciprocity, and responsibility (Clark et al., 2010; Kirkness & Barnhardt, 1991); ownership, control, access, and possession (OCAP) principles (Schnarch, 2004); and ethics as determined by the Indigenous community (Justice Institute of British Columbia, 2002, 2006). According to Clark et al. (2010), “researchers who are connected to the community are therefore accountable to the community for the ethics, practice and outcomes/action of the research. The findings are more than data, but are stories and actions in relationship with people and communities” (p. 250). Ethics approval was obtained from the community and the university, and our team followed Tri-Council Research Ethics Guidelines. Finally, in keeping with the concept of Indigenous knowledge translation (Estey, Smylie, & Macaulay, 2009), the findings were presented by the Indigenous youth-peer researchers at an Indigenous youth health conference organized in Kamloops by the research team and attended by more than two hundred Indigenous youth from rural and urban communities within British Columbia. In addition, the findings were presented in 2011 by the youth researchers, together with members of the team, in Toronto at Fostering Biimaadiziwin (the good life), the first national conference on urban Indigenous health sponsored by the National Association of Friendship Centres. The theoretical and applied framework guiding this project built on the work of Irihapeti Ramsden, a Maori nurse, and of Dianne Wepa (2003, 2005), a Maori social worker, who both, together with Maori national organizations, developed the concept of cultural safety. Cultural safety focuses on power relationships between the colonizer and the colonized and is linked to Indigenous self-determination (Chansonneuve, 2006). The emphasis is on the experience of the service user or client in defining the experience as culturally safe, thus shifting power relationships. In addition, the research team focused on culturally safe research within an intersectional research team and grounded in Indigenous methodology and Indigenous ethical protocols (see appendix 6.1). Ermine, Sinclair, and Jeffery (2004), in their review of research with Indigenous people, identify participatory action research as one of the best

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methods for addressing the complexity of the issues currently facing Indigenous communities: “The participatory action research approach to community issues is a culturally relevant and empowering method for Indigenous people in Canada and worldwide as it critiques the ongoing impact of colonization, neocolonialism and the forces of marginalization” (p.  9). Other Indigenous scholars echo this view, such as Eve Tuck (2007) who writes of the “radical possibilities of PAR spaces as spaces in which sovereignty can be recognized, practiced, theorized, and cultivated” (p. 163). Furthermore, community-based participatory action research invites youth to “critically investigate the social policies that construct and constrict their lives, interrogating policies that ravage their communities and threaten their imaginations” (Torre, Fine, Alexandra, & Genao, 2007, p. 238). Research Methods The community-based participatory action research study was carried out in Kamloops, British Columbia, using an Indigenous research paradigm that involved mixed methods, including four talking circles with approximately forty participants, and seventy-eight surveys completed by urban Indigenous youth (60 per cent self-identified girls and women; 40 per cent self-identified boys and men) aged twelve to twenty-five. The data were collected in 2008–9 and analysed in 2010. Our team recruited participants from three types of educational sites: an alternative Indigenous high school program, a number of mainstream high schools, and a university campus. All survey and talking-circle questions were developed in consultation with the project’s advisory board, comprising community partners, Elders, and Indigenous youth. The original items for the survey and the talking circle were piloted, revised, and then reviewed again by the research team. The survey items were then divided into questions that could be answered on a Likert scale and items that required further explanation. Consistent with an Indigenous, holistic view of health, the survey and talking-circle items included questions from the physical, cognitive, emotional, and spiritual domains. Four talking circles were conducted, two with girls and women and two with boys and men. Team members trained two Indigenous youth researchers to collect the data, and they were part of developing the survey. The talking circles were audio recorded and transcribed. The research team shared and read the transcripts using Indigenous storywork methods that facilitated the identification of key themes and issues (Archibald, 2008). Indigenous scholar Jo-ann Archibald describes her Indigenous method of storywork as “synergistic interaction between storyteller, listener, and

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story” (2008, p. 3). Community partners, Elders, and Indigenous youth then used a collaborative analysis approach because “collaborative analysis allows the results to be encircled within a set of ideas and relationships and therefore become hermeneutic … [A]ll participants in the research are part of analyzing these relationships and are needed to ensure that the concepts are properly encircled” (Wilson, 2008, p. 122). University-based members of the team also conducted training sessions on Indigenous research methods with the Indigenous youth members of the research team, and mentoring was ongoing. Urban Indigenous youth members of the team also administered the survey at the three types of educational sites. The whole team together analysed the survey results and the transcripts from the talking circles. The team gained greater insight into the quantitative survey data by considering the qualitative data emerging from the talking circles, as the two complemented one another. We were conscious that in using a quantitative method we could become trapped in a numbers game. Often, resource allocation occurring via policy decisions is based on “hard facts” and the economic “bottom line,” whereas much of the evidence surrounding the experiences of Indigenous communities is qualitative in nature. As observed in a study commissioned by the Cariboo Tribal Council, personal experiences are not more “truthful” when there are numbers attached to them, nor is research likely to uncover information that could not be obtained from comprehensive personal narratives. However, when research supplements such information sources, those experiences or narratives cannot be dismissed as “merely stories” (Chrisjohn & Young, 1997). Findings The Indigenous youth reported connections across a wide range of factors related to their health needs, including identity, Indigenous culture, knowledge about and resistance to colonialism, and recommendations for culturally safe health care. Our findings are organized under four headings: “Indigenous Identity and Resistance,” “Indigenous Sovereignty and Cultural Connectedness,” “Colonialism and Structural Racism,” and “Culturally Safe Health Care.” The results are consistent with those of the limited research that has been conducted to date reporting that young speakers of Indigenous languages cite culture-based spirituality and traditional Indigenous healing methods as important for their health (First Nations Centre, 2005; MacKay, 2005).

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Indigenous Identity and Resistance The overwhelming majority (96 per cent) of Indigenous youth reported that they were proud of their ancestry. This finding resists narratives of Indigenous youth as having low self-esteem or as struggling with mental health (narrowly defined, and including depression) linked to low self-worth. Self-descriptions by participants in the talking circles captured the tremendous diversity among Indigenous youth. Some called themselves “short,” “tough,” “tall,” “brown,” “nice,” “outgoing,” “pretty,” “non-­judgmental,” “random,” “honest,” “athletic,” “not racist,” “joyful,” “happy,” “not a Christian,” “two-spirited,” and “Christian”; others included a “singer,” a “dancer,” “fun,” a “pothead,” “jud”; and still others described themselves as “someone that drinks all the time,” a “stud magnet,” “another Native,” “another Chilcotin,” a “baller”; one said, “I introduce myself with my full name”; others said that they were “awesome,” “wonderful,” “courageous,” “curious,” “creative,” and “mean.” The youth who were interviewed and surveyed also expressed strong resistance to the labelling of Indigenous youth by mental health services, as well as to the resulting stigma. Youth strongly resisted colonial spaces of mental health. As one youth described it, “putting signs on an office saying Mental Health Counsellor … is not where we want to be seen going, because we don’t want to be labelled, we do not want to go to certain labelled services [mental health]. But school counsellors’ office, FNEW [First Nations Education Workers] office, hospital, clinic – they’re not embarrassing offices to access – Friendship Centres.” Many youth echoed this view, stating that the community should “stop young people from going to counselling because it labels us.” Related to this concern with stigma, issues of trust and cultural safety were key in Indigenous youth recommendations with respect to seeking help for mental health issues. The youth expressed sophisticated ideas about when it would be safe to ask for help, and from whom. As one youth shared, “If you’re suicidal, then it’s hard to trust people. I have a friend who cuts. She was picked up hitch hiking and threatened with her life, so, instead of reporting the incident, she cut! Go to someone you feel comfortable to talk to – not easy to find, but you could ask someone at school (like a counsellor or First Nations education worker), grandparents, emergency help phone lines; go to an Elder or introduce a friend (who is in need of advice) to an Elder, church people, Phoenix Centre if you’re not in school.”

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In addition to challenging mainstream notions of Indigenous youth identity and mental health, participants challenged dichotomous notions of urban-rural in terms of Indigenous youth identity. A number of youth were currently urban but had moved on and off reserves throughout their lives. Both of the peer researchers identified as urban currently, but had also lived on reserves, and helped the research team to understand the movement of many of the participants on and off reserves. Few participants identified as uniquely urban, and many described living in multiple localities and moving back and forth to see family, to access supports, or to take part in ceremonies. For many participants, distance from Elders was an issue in their wellness: “I only see my grandma … once a month, when she comes to town, but it’s important for my health.” “I don’t see my grandma much, but when I do it makes me happy. My grandma lives in [another city], so distance is an issue.” Challenging dichotomous Western categories of who is urban results in a more nuanced understanding of the resources available and the barriers to “urban” Indigenous health. For example, one of our peer researchers moved between her home reserve and the city of Kamloops, and her challenges in accessing health care were compounded by her mobility because her doctor resided in the small town near her home reserve. It is important in our services for Indigenous youth that we consider the many spaces that they move in and between.

Indigenous Sovereignty and Cultural Connectedness In response to a separate question, 42 per cent of participants indicated that their Indigenous nation-based spirituality was the foremost influence in their health and the way they lived their lives. In our search for links between health and Indigenous culture we asked participants if they could speak their Indigenous language. Although we did not assess language competency, 32 per cent reported that they could speak their Indigenous language. Further analysis found that youth who could speak their language participated more in traditional Indigenous ceremonies. Most (64 per cent) of the twenty-five Indigenous-language speakers reported significantly more participation in Indigenous ceremonies for health than did nonspeakers (17/53; 32%; F[1,7] = 5.16, p = .026). This result speaks to the interconnectedness and holism of health within an Indigenous worldview, which, in turn, points to the value of language programs for urban Indigenous youth as part of decolonizing efforts for their mental health, and supports calls for Indigenous language revitalization in the broader

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community. It also resists pan-Indigenous ideas and notions of culture as healing, as indicated by the importance of the languages and cultural ceremonies of specific nations, while recognizing the shifting spaces through which Indigenous youth move from rural to urban. Participants were also asked if they had used traditional Indigenous healing approaches. Surprisingly, 48 per cent indicated that they had done so, and 52 per cent reported that Indigenous ceremonies were important to their health. This finding raises questions about what healing approaches they were accessing, where they were accessing them, and whether these should be made more widely available to youth. One participant contrasted Western medicine with Indigenous healing approaches as follows: “I want to learn how to make Indian medicine, because one time I was heating up and I felt like I was cold to being really hot. I had to go to the hospital for a day, but I felt better after taking the Indian medicine.” Another spoke of the importance of sweats: “I wish more sweats were accessible. I haven’t been in one since I was little, but I found it helpful. I felt better physically, emotionally, mentally, and spiritually.” Access and connection to Elders were also important to the health of participants, and mental health in particular. In the talking circles Elders were described as “comforting”: “They are just like parents, but they are your grandparents … sometimes I can connect better with them because they’re not as strict as my parents.” Another respondent said, “I have a great relationship with my grandparents. I see them … every weekend. Meals together are important. They are hilarious.” Relationships with Elders were also central to the holistic health of the youth. Participants identified a range of things they would want to learn from an Elder; one stated, “I would want to know how to get an Indian name, how culture started, tradition, history, to speak my traditional language, and cooking.”

Colonialism and Structural Racism Participants indicated that they understood the impact of colonization and ongoing colonialism. Although 82 per cent agreed or strongly agreed that they understood how residential schools affected Indigenous people, this percentage included significantly more girls and women (45/47; 91%) than boys and men (21/31; 68%): F(1,76) = 6.98, p = .010. We were interested in whether the youth experienced instances of racism and if this affected their health. Of the participants, 23 per cent reported that racism had had a negative impact on their health. The

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talking circles provided powerful examples of racism, and the impact was multigenerational. I was at [a restaurant] with some friends and an Elder, and we were so angry because they put us in a corner. The server was ignoring us because we were Native, and when I finally asked him if we were going to get some service, he directed a female server to serve us, but he was serving other White people. Later, during our meal, there was a hockey team being really loud, and they asked our table to be quiet, but they didn’t say anything to the hockey team. The Elder that was with us got so mad too, and she cried.

Another Indigenous youth described how colonial stereotypes and racism continued to operate in settler-colonial Canada: “We were in [a supermarket] gas bar, and the guy said, ‘You should get those Native people to do the rain dance,’ and it was totally sunny out.” Youth also identified the impact of the intersection of race with gender and gender identity: “People won’t hire because of race and sexual orientation,” said one participant. This quote is an important example of how colonialism continues to have an impact on the bodies and opportunities of two-spirit and queer youth. Gender differences were also linked with speaking up about racism, with 68 per cent of boys and men indicating that they spoke up, compared to 36 per cent of girls and women: F(1,76) = 6.10, p = .010. One young man said, “I get discriminated [against] all the time, but I just speak up and say, ‘Is it because I’m brown that you’re staring at me?’”

Culturally Safe Health Care One quarter of participants stated that they encountered difficulties accessing health care. Health care centres such as the Kamloops Aboriginal Friendship Society health centre were identified in the focus groups as important alternatives to mainstream health service provision points. Furthermore, youth did not believe that having an Indigenous health care provider was as important as having all health care providers educated and able to practise in a culturally safe way with the skills needed to work with Indigenous youth: “Non-Aboriginal health care providers should be skilled to work with Aboriginal youth. All health providers should be skilled to work with First Nations youth. [I should not be] pawned off to an Aboriginal worker because White people don’t know how to deal with me.” This

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view was echoed by another participant who said, “I go to anyone that will acknowledge my culture, grandparents, Elders.” Further analysis found that having Indigenous health care providers was more important to girls and young women than to boys and young men: F(1,75) = 6.54, p = .013. Approximately 49 per cent of participants used the Internet to find health information. This highlights the importance of making mental health information available online and presenting it in ways that are friendly to Indigenous youth. Discussion Key findings of this study provided preliminary answers to our four research questions, including that a strong Indigenous identity was in fact very important to youth and their relationship with their health; that they self-identified as having a strong Indigenous and nation-based connection; and that, with regard to structural racism and colonialism, their awareness was clear and nuanced. Finally, consistent with the literature, the findings have implications for Indigenous-centred and culturally safe health care, including mental health, and imply that health care services need to involve Elders, families, communities, and traditional healing methods (Anderson et al., 2006; Majumdar et al., 2004; Skye, 2002; Steenbeek, 2004; TeufelShone et al., 2006). More importantly, the findings support the call by Secwepemc Elders, and recent work by Secwepemc scholars, for a return to nation-specific cultural teachings and language (Billy, 2009; Manuel & Posluns, 1974; Michel, 2012). As described by the international Indigenous rights activist and Secwepemc chief George Manuel, co-author of the 1974 book The Fourth World, “residential schools were the laboratory and production line of the colonial system” (quoted in Billy, 2009, p.  63). Manuel’s father, a traditional medicine man, came to believe that learning about his Indigenous culture and speaking his language were a detriment to his son: “Things are going to be different from here on in. I don’t think it is wise for me to teach you to go into the mountains. I think it will be a detriment rather than an asset for you” (p. 68). Manuel’s father told him to be “White” but then later, on his deathbed, said, “My son, I made a mistake. You raise your children and your grandchildren as Indians” (p. 68). For her doctoral dissertation Janice Billy, a Secwepemc woman, interviewed Secwepemc Elders, who not only lamented the devastation of colonization but pointed to language and sovereignty as the way forward; the late Elder Irene Billy

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describes attending Kamloops residential school for nine years, from eight to seventeen years of age, and now, at age eighty-two, “as grandmother and great grandmother I can pass on my language but not much of our culture. I am learning about our medicines and other things I didn’t learn when I was young” (Billy, 2009, p. 90). The exploratory study applies an intersectional, Indigenous, and culturally safe framework to tell the story of Indigenous youth mental health. The urban Indigenous population (54 per cent in 2006) is the fastest-growing segment of the Canadian Indigenous population (Statistics Canada, 2009). Yet in Kamloops, as in other cities across Canada, there remains a temporal component to one’s location and identification as “urban Indigenous,” which varies according to the person’s life history and story. This research tells the story of the importance of strong connections to one’s Indigenous lands, languages, and traditions, while also recognizing the spaces that Indigenous youth move between and around in navigating the process of growing up. MacKay (2005), in a study with urban Indigenous youth in Saskatoon, draws on the work of Norris and Jantzen (2003), who report that urban-rural mobility “is motivated by people moving to maintain family and cultural relationships” (p. 111). MacKay (2005) notes that ideas of identity and belonging are not contained within the boundaries of cities or reserves. Our research illustrated similar results. One of the youth researchers in our study put it as follows, describing the relationship between mobility, identity, and health care: “What health means to me is being physically and mentally healthy, to have balance in your life by staying in touch with your culture and family. When I moved from a ... town to a city, I found it hard to find health services. I do still go back to my small town to get my health needs met, because that is all I know. So I do find it hard to find some services. I have moved out of my home for a few years now and I do feel a loss of home and family. I would have to make time to see them.” While clearly appreciating the advantages of her new urban environment, this youth describes the challenges of leaving her reserve and her need to stay connected to family and culture. Furthermore, in our analysis of the interviews the youth-peer researcher helped to make meaning of the movement of the participants. For the youth researcher and her friends, a move back to the reserve often coincided with a need to seek extra support or with a life transition. These findings remind us that Indigenous presence in cities is a direct challenge to colonialism. As Cannon and Sunseri (2011) challenge, “indigeneity and urbanity are by no means incompatible to one another, nor do they stand in a dichotomous, either/or relation[ship]. The assumption is that we [Indigenous peoples] do not belong in cities” (p. 58).

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The participants in our study also expressed pride in their Indigenous identity, a keen interest in learning their traditions, and the value of traditional medicines for their own health. One of the few Indigenous youth health surveys conducted in Canada, which was designed specifically to examine health information issues, reported that youth are interested in learning about and using traditional medicines (First Nations Centre, 2005). Furthermore, previous research with urban Indigenous youth (Belanger, Barron, & McKay-Turnbull, 2003) found that Indigenous identity is formed through a wide circle of activities, including access to Elders, language, First Nations education, community health spaces such as Friendship Centres, and the Internet. Tradition is thus inclusive of modern technology. In our study 49 per cent of youth accessed the Internet for health information. The research team has since considered how the Internet might be used for health promotion purposes, such as reviewing existing websites, suggesting changes to these sites, and finding ways to integrate culture into technology. Further research on health promotion and intervention by and with urban Indigenous youth is an area to be investigated. Youth were aware of the structural factors that affected their health, in particular colonialism, sexism, and ongoing racism. However, gender differences were noted in this question, with women and girls giving a higher rating to their knowledge of residential schools. In contrast, men and boys were more likely to speak up when encountering racism. Furthermore, speakers of an Indigenous language rated their health higher than those who did not speak an Indigenous language, and also indicated that their Indigenous spirituality was the most important factor in how they lived their lives. The study not only sheds light on the experiences of urban Indigenous youth who long to sustain and build on their Indigenous nation-specific teachings, but also invites us to consider the relationships between mobility, identity, and health care. It underlines the need for further theorizing about Indigenous identity and health, and about the markers of colonial identity, flowing from the Indian Act, that are represented in mixed, urban, status, and non-status categories. As Bonita Lawrence (2003) reminds us, “for Native people, individual identity is always being negotiated in relation to collective identity, and in the face of an external, colonizing society” (p. 4). These findings contribute to Indigenous and decolonizing scholarship that resists narratives of disease. They provide new, more nuanced, and complex stories about urban Indigenous youth. Future research could examine the complexity of the ways in which racism has an impact on the mental health of urban Indigenous youth, and how the gender differences,

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gender identity, and sexuality noted in the present study affect health. For example, we found that boy and men participants spoke up more often about racism. The impact of speaking up for boys and men, and of silence for girls and women requires further exploration. An Indigenous intersectional analysis of the impact of racism and other forms of structural violence on the lives of Indigenous girls does not centre the colonizer, nor does it replicate the erasure of two-spirit and trans people in our communities; rather, this analysis attends to many intersecting factors including gendered forms of colonialism and the dispossession of Indigenous lands (Clark, 2016). There are ways in which this research also extends colonial narratives. Of the participants in our study seven self-identified as two-spirit, one as gay, and one as bisexual. Similar to the challenges of determining who is urban Indigenous, binary analyses of sex and gender preclude an understanding of the spiritual role encompassed within a two-spirit identity and neglect the diversity of Indigenous nations’ understandings of this role and the ways in which it bridges this dichotomy. As described by Indigenous scholar and activist Sarah Hunt in an interview for the Nexus newspaper (Wedel, 2014), the term two-spirit is “not just about being gay, or being bi, or trans, necessarily; it’s a term that is both about cultural identity and sexual or gender identity. It’s a term that in some ways defies those colonial categories.” Indigenous intersectional scholarship calls on us to move beyond the binary constructs of gender found in the categories of men and boys and women and girls. Qwo-Li Driskell (2011), a Cherokee two-spirit academic, reminds us that gender itself is a colonial construct. Driskell points out that prior to colonization some communities had up to twelve genders and that colonization has altered our memory of gender. Colonialism and patriarchy need a gender binary system because colonial domination is impossible without binary constructs. Driskell notes that, while relearning Cherokee, she-he has been reminded that Indigenous languages were always multifaceted and multidimensional, as suggested in references to two-spirit people as having “a different heart” or having “two hearts.” According to Driskell, “unless two-spirit people are listened to we won’t achieve” decolonization. Given the key role accorded to Elders by the Indigenous youth in our study with respect to their health, we need research that listens to the unique experiences of two-spirit Indigenous youth and Elders and is grounded in specific nations and lands, such as the work of Secwepemc two-spirit academic and activist Jeffery McNeilSeymour (2015).

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Conclusions Urban Indigenous youth are living histories born of “a context of concrete social, political, and historical struggles and success” (Downe, 2006, p. 14). Although their identities and health needs are framed within experiences of colonization (ongoing), residential schooling, and removal by child-welfare authorities, they are inheritors of rich narratives and histories of resistance and strength. Mental health programming based on Western value systems only serves to further colonize the bodies and identities of Indigenous youth. The health of urban Indigenous youth must be addressed using models that are based on the vast diversity of Indigenous traditions, belief systems, and local knowledge and that incorporate spiritual, emotional, mental, and physical health. Let us not promote any one model with a fixed concept of Indigeneity, gender, sexuality, or other aspects of identity. Programs that can respond to the unique needs and experiences of diverse urban Indigenous youth will be able to foster more meaningfully holistic mental health, healthy resistance and resilience, and community connectedness. According to the Indigenous youth activist Jessica Danforth (formerly Jessica Yee; 2009), resistance lies in finding “practical ways to translate all of this into modern terms for our young people to use so they can recover what past generations may have lost, and re-assert themselves as the resilient, fierce, and knowledgeable young people who were once upon a time the most sacred in many of our cultures” (pp. 3–4). Appendix 6.1: Wise Practices in Campus and Community Partnerships The following checklist can be used by staff, students, faculty, and other members of the community to ensure that their project addresses the following principles in developing a learning and research partnership and agenda that meet the needs of urban Indigenous youth, families, and individuals in Kamloops.3

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Question

Determination of group’s own research needs and priorities

Have Indigenous communities determined the development and needs of this project? Who wants this research to occur? Who will benefit from it?

Indigenous sovereignty

How are the values, perceptions, and expectations of the Indigenous communities included to respect the principles of Indigenous sovereignty?

Participation of Indigenous students and community members

Are students and community members given leadership roles in our project? How are students and community members supported in taking leadership positions in our project? Does our project have an advisory committee? To what extent are students and community members involved in decisionmaking about the research in which they are participating? Are students and community members considered key stakeholders during evaluation of the project?

Social justice and collective responsibility

Has our project created working partnerships with members of the community, including Elders? Do we attempt to educate the broader community about social justice issues affecting the Indigenous community? Do we work with partners from other sectors? Is our project informed about larger systems of power in society, such as law, education, and colonization?

Equity

Do Indigenous and non-Indigenous communities and individuals feel that they can approach our project without being judged? Do students and community members have voluntary participation in our research project? How is an Indigenous perspective centred in our strategies for accessibility by Indigenous students and community members? Do our research practices create barriers to accessing our project? How do people know about our research project? Are there any gaps in our communication? Are we aware of all the Indigenous nations, including urban Indigenous communities, in our area? How are we engaging with them in an accessible manner? How does our project make students and community members feel welcome? How is training and mentoring built into the project to create opportunities for everyone to participate?

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Question

Intersectional, Indigenous, and culturally safe research processes and methodologies

How do we ensure that our project is free from judgment? How do we train our researchers to ensure cultural safety for the diverse needs of participants? How do we address racism and other interlocking forms of discrimination in our research project? Do we offer Indigenous nation-specific and localized opportunities to participants? Are we conducting our research project in a manner that addresses the specific cultural needs of diverse communities?

Relational and decolonizing perspective

Is there room in our project for workers to get to know the participants and to maintain contact with them? Does the project work to foster decolonization of research and naturally evolving relationships? Does our project honour the relationships that participants already have within their peer groups, families, and communities? How do we deal with conflict between individuals involved in the project?

Respecting Indigenous nations and communities

Have Indigenous communities been given an opportunity to collaborate on the research in their community? Have Indigenous communities been adequately engaged in outreach for participation in the research project?

Protecting Indigenous knowledge

Have Indigenous communities had the opportunity to organize the Indigenous knowledge to be shared, and the format in which it will be shared, used, and stored? How is the research meaningful to students and community members? Has the meaning of “informed consent” for sharing knowledge been determined by the Indigenous communities? Is consent treated as a process rather than an event, in order that participants can leave the research if they so decide? Is the research led within Indigenous communities? Are Indigenous communities involved in all aspects of the project?

Reflexive practice

Does the project allow for continued reflexivity, evaluation, and critique on the part of community researchers? Have individual members answered the questions: Why am I doing this research? How do I benefit in this research? What are my trespasses and privileges, if any?

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Acknowledgments We would like to hold our hands up to Indigenous youth, Elders, and Indigenous health professionals for their guidance, contributions, encouragement, and vision of action for future work. Co-author Talicia Main gave birth during the course of the project, yet participated in all of the research meetings throughout; the other members of the team applaud Talicia for her contribution and commitment to the project. We would also like to acknowledge the participation of Bradley Anderson, Director of Aboriginal Health, Interior Health Authority, in all phases of the research project, including data collection; and the support, throughout the study, of Dr Colleen Varcoe of the University of British Columbia, and Christopher Phillips, Executive Director, Kamloops Aboriginal Friendship Society. The authors received financial support for the research project and the writing of this article in the form of an Interior Health Authority Research Award through Thompson Rivers University.

NOTES Some material in this chapter first appeared in 2013 in “Melq’ilwiye: Coming Together — Intersections of Identity, Culture, and Health for Urban Aboriginal Youth,” Canadian Journal of Nursing Research, 45(2), 36–57. The original article, copyright by McGill Library and Archives, is available under the CC-BY-3.0 licence. 1 For a discussion of colonization or the “invasion and eventual domination of North America by European Americans,” and the subsequent ongoing colonialism experienced by Indigenous communities, see Alfred (2009). 2 Cultural competency is defined as “skills and behaviours that help a practitioner to provide quality care to diverse populations” (see National Collaborating Centre for Aboriginal Health, 2013, for definitions of terms including cultural awareness, cultural sensitivity, cultural competence, and cultural safety). For resources on evidence-based practice or using evidence and implementing best practices, see the Centre for Addiction and Mental Health’s document Knowledge Exchange: Evidence-Based Practice (2014a). For more on trauma-informed care or promoting the implementation of traumainformed practices in programs and services, see the Centre for Addiction and Mental Health’s Knowledge Exchange: Trauma-Informed care (2014b). 3 This checklist was created by Sarah Hunt and Natalie Clark for the Justice Institute of British Columbia, Social Services and Community Safety Division (Justice Institute of British Columbia, 2002).

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PART THREE Gendering, Discourse, and Power

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7 Is It Normal or PMS? Women’s Strategies in Negotiating and Resisting Negative Premenstrual Change Jane M. Ussher and Janette Perz

Introduction Since the time of Aristotle and Plato Western medical explanations for women’s reproductive distress have centred on the body, with medicine laying the blame for many forms of distress on wandering wombs and, more recently, on raging hormones and neurotransmitter imbalances (Ussher, 1989). Contemporary Western medicine categorizes negative premenstrual change as premenstrual syndrome (PMS) or premenstrual dysphoric disorder (PMDD), a fixed and unitary pathology within the woman deemed to be caused by biomedical or psychological factors (Ussher, 2011) and estimated to be of the same magnitude as major depressive disorder in reducing women’s quality of life and economic functioning (Halbreich, Borenstein, Pearlstein, & Kahn, 2003). However, disparities between and within cultures in the reporting of premenstrual distress – and in the positioning of premenstrual change as pathology – raise questions about the validity of individualizing biomedical and psychological theories of premenstrual change (Cosgrove & Caplan, 2004). For example, researchers have found lower rates of reported premenstrual symptoms in many non-Western locales and cultures, such as China, Hong Kong, Thailand, Sri Lanka, Pakistan, and India (Chang, Holroyd, & Chau, 1995; Dennerstein et al., 2010; Hoerster, Chrisler, & Rose, 2003). Other studies have shown that people in some non-Western cultures are less likely to see premenstrual change as a serious problem that warrants medical attention (Chandraratne & Gunawardena, 2011; Wong & Khoo, 2011). Rates of premenstrual distress also vary significantly across Western cultures, suggesting that cultural factors influence the awareness of symptoms or the perceptions of symptom severity (Dennerstein, Lehert, Bäckström,

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& Heinemann, 2009). Even within some Western cultures PMS is not universal. For example, a study that compared immigrant and United States– born women who identified as Asian, Black, or Latina found that the likelihood of reporting premenstrual distress increased with the duration of U.S. residence, suggesting that exposure to mainstream U.S. culture is associated with the diagnosis of PMDD (Pilver, Kasl, Desai, & Levy, 2011). Such a finding troubles the generalizability of assumptions that are based on PMS research conducted with White, educated, middle-class women, and draws attention to the erroneous assumption that Western women are all middle class and of European origin. The research challenging Western medical notions of PMS has led feminist social constructionists to argue that PMS and PMDD are socially constructed labels or culture-bound syndromes (Chrisler, 2004). They point out that within the medical paradigm women monitor premenstrual moods and behaviour in relation to often unrealistic dominant feminine ideals of calmness, consistency, and capability (Brooks, Ruble, & Clark, 1977; Ussher, 2004), and blame themselves, or their bodies, for perceived transgressions. In this way, women take up the subject position of “PMS sufferer” (Chrisler & Caplan, 2002). Feminist social constructionists counter this scenario by conceptualizing premenstrual change as a normal part of women’s experience, one that has been positioned as PMS or PMDD because Western cultural constructions promote a view of the menstruating woman as labile or dysfunctional, and the premenstrual phase of the cycle as a time of pathology (Chrisler & Johnston-Robledo, 2002; Ussher, 2006). To be clear, a social constructionist view of PMS does not deny the reality of premenstrual change. There is convincing evidence that during the premenstrual phase of the cycle some women experience embodied and psychological change accompanied by an increased sensitivity to emotions or to external stress (Sabin Farrell & Slade, 1999; Ussher & Wilding, 1992). Emotions, such as anger, sadness, and irritability, as well as creativity and sexual desire can also feel more powerful than usual during the premenstrual phase (Chrisler, Johnston, Champagne, & Preston, 1994; King & Ussher, 2013). Meanwhile, the multitasking that is a normal part of many women’s lives can be more difficult (Slade & Jenner, 1980), and distress can result when the responsibilities of home and work cannot be accommodated simultaneously (Ussher & Perz, 2010). There is also a growing body of research reporting an association between relationship strain and reports of PMS, with evidence that, premenstrually, relationship satisfaction can deteriorate (Clayton, Clavet, McGarvey, Warnock, & Weiss, 1999) and that married women experience greater disruption of daily living as

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a result of premenstrual symptoms (Dennerstein et al., 2010). This finding suggests that the most commonly reported psychological symptoms of PMS and PMDD – anger and irritation – can be conceptualized as a legitimate response to the material circumstances of women’s lives, including over-responsibility, lack of support, and relationship tension (Figert, 2005; Ussher, 2004). However, women are not passive sufferers of premenstrual change, despite their characterization as such within biomedical discourse. Women report positive premenstrual changes, either alongside negative ones or instead of them (Chaturvedi & Chandra, 1990; King & Ussher, 2013), and some self-identified PMS sufferers accept premenstrual change as a normal part of experience, embracing access to the “deeper energies” and emotions they experience at this time (Ussher & Perz, 2013). There is also evidence that women can experience negative premenstrual changes in emotion, behaviour, or embodiment without discursively constructing these as PMS or experiencing any associated distress (Cosgrove & Riddle, 2003). Indeed, women who resist the PMS moniker can be seen to be “rewriting ideologies of gender” by creating “alternative” or “counter discourses” (Day, Johnson, Milnes, & Rickett, 2010, p. 238) that subvert the pathologization of premenstrual change. One central aspect of this pathologization begins with the Western conceptualization of emotion as stable, consistent, and under control. As Joan Chrisler (2008) points out, PMS is an archetypal example of a “disorder” that positions as illness the failure to self-regulate – in this case, women’s inability to control expressions of anger. A “menstrual monster” threatens to overwhelm women; women are socialized to believe that they “need to work at self-control in every waking hour” (p. 2). Chrisler argues that gender-role socialization and beliefs about femininity affect women’s sense of whether they can (or should) regulate emotional or physical changes that are experienced premenstrually. This socialization includes several processes: the internalization of unrealistic standards against which women measure successful self-regulation; an obscuring of the impact of selfobjectification, self-sacrifice, and over-responsibility on self-monitoring of internal sensations and needs; and the social construction of gendered perceptions of power and self-efficacy that can affect self-regulatory strength. Chrisler suggests that more research is required to understand how and why women fear losing control and “how to help them to leave that fear behind” (p. 2). The research we present in this chapter addresses this aim by examining the experiences of women who resist the common descriptor of the PMS self as “out of control” (Chrisler, 2008, p. 1; Ussher & Perz,

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2010, p. 440), by rejecting a biomedical diagnosis of premenstrual change or by claiming agency in negotiating premenstrual distress. We adopt a critical realist epistemology in order to examine how women resist biomedical discourse associated with PMS and negotiate negative premenstrual experience. Critical realism recognizes the materiality of the body and other aspects of experience but conceptualizes this materiality as always mediated by culture, language, and politics (Bhaskar, 1989). Critical realist epistemology does not reduce materiality to discourse or claim that material experience is without meaning unless discursively interpreted. Rather, “material practices have an ontological status that is independent of, but in relation with, discursive practices” (Sims-Schouten, Riley, & Willig, 2007, p. 102). From this epistemological standpoint, then, we move beyond a realism-constructionism (or mind-body) divide and avoid unnecessary distinctions between subjective and objective or mental and physical aspects of experience. From a critical realist viewpoint, premenstrual change is accepted as a real phenomenon, but the lived experience of the change must be understood within a cultural or relational context, with meaning provided by the discursive and linguistic resources available to women. Within this framework a material-discursive-intrapsychic (MDI) model (Ussher, 1999) provides a multidimensional analysis of the interconnections among several aspects of premenstrual change, including women’s embodied and psychological experience of it; the material and relational context within which women live; the impact of PMS and PMDD as socially constructed categories; and the psychological negotiation in which women engage to make sense of their experience. Drawing on two recent research studies for which the co-authors were co-lead investigators, we use the MDI model to examine how relational and cultural constructions of negative premenstrual change influence women’s lived experience of premenstrual distress. Reproduction and Resistance of Dominant Discourses of Premenstrual Pathology We begin by presenting findings from our research conducted in 2006–9, which used mixed methods, including interviews with sixty women, to examine the construction and experience of premenstrual change among self-diagnosed PMS sufferers (Perz & Ussher, 2009; Ussher & Perz, 2010, 2013). The participants were Australian women aged twenty-two to fortyeight (average age of thirty-five) – 80 per cent of whom had a partner – who were recruited through advertisements placed in social media and through

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local reproductive health care services. Forty-six women identified as heterosexual, the remainder as lesbian. The 47 per cent who reported having children all indicated that their children lived with them. Of the 82 per cent who reported being employed, 52 per cent worked full-time. Most participants were Anglo-Australian and residents of Australia’s largest city, Sydney. We conducted one-to-one, semi-structured interviews lasting forty-five to ninety minutes. Interviews took the form of a discussion between the interviewer and the participant; we avoided leading participants, by keeping interview questions open and general. The interviewer began by asking women to describe a typical experience of PMS and how this varied across relational contexts – that is, with partners, family, friends, or colleagues. The discussion then moved to exploring coping strategies. We adopted the approach of a feminist, Foucauldian discourse analysis, which examines the role of discourse in the constitution of subjectivity and social practice while acknowledging the material conditions that influence such experiences and the role of discourse in wider social processes of legitimation and power (Ussher & Perz, 2014). We also drew on thematic decomposition (Stenner, 1993), which separates text into coherent themes that reflect the subject positions allocated to, or taken up by, a person (Davies & Harre, 1990), where it is assumed that narratives do not simply mirror a world “out there” but are constructed, creatively authored, rhetorical, replete with meaning, and interpretive (Potter & Wetherall, 1986; Reissman, 1993). All of the interviews were transcribed verbatim. A subset of interviews was independently read and reread by both authors and a research assistant to identify first-order codes – such as “embodied changes,” “emotional distress,” “relational issues,” “PMS at work” – and “triggers for premenstrual distress.” The entire dataset was then coded, using NVivo, a computer package that facilitates organization of coded qualitative data. Coded data were then read independently by both authors. Codes were grouped into higher-order themes, a careful and recursive decision-making process, which involved checks for emerging patterns and for variability and consistency, and judgments about which codes were similar and dissimilar. The thematically coded data were then collated and reorganized through reading and rereading, allowing for further refinement and review of themes, where a number of themes were collapsed into each other, and a thematic map of the data was developed. In this final stage we developed a core category of “coping with negative premenstrual change,” which essentially linked many of the themes. In the presentation of the results below we use pseudonyms to maintain participants’ anonymity.

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PMS as Pathology versus Awareness and Acceptance of Premenstrual Change All of the women we interviewed described PMS as being characterized by heightened premenstrual irritability, intolerance of others, and oversensitivity. Women described their premenstrual selves with terms such as irritable, cranky, short-tempered, snappy, confrontational, bitey, impatient, grumpy, stroppy, frustrated, stressed, annoyed, and teary, and leaving them with a “short fuse” (Ussher & Perz, 2013). Perceptions of embodied changes, including “bloating,” “pimples,” and feeling “swollen” or “fat,” also led many women to say that they felt “unattractive,” “ugly,” or “uncomfortable in my own skin.” However, while the definition of PMS was consistent, we found greater variety in how women accounted for these interpersonal and embodied experiences. The majority of interviewees adopted the dominant discourse of premenstrual change as pathology, positioning their feelings as “out of control”: “I physically feel like I can’t stop it. It’s just this physical feeling of, I don’t know, anger inside” (Melanie); “I can’t help it” (Leah); “It’s feeling out of control” (Joan); “I don’t have control over how I feel at all” (Penny). These accounts of PMS can be characterized as a rupture in the self-silencing that many of the women implied they enact for three weeks of the month; the feminine ideal of caring compliance is temporarily replaced by anger and assertiveness (Perz & Ussher, 2006; Ussher, 2004; Ussher & Perz, 2010). However, this expression of premenstrual irritation or anger was invariably followed by guilt and self-criticism, suggesting that self-positioning as a PMS sufferer does not exonerate women from “bad” behaviour, as has been previously suggested (Elson, 2002). Thus, Rachel told us, “You feel horrible about it the next week … it makes you feel sick.” Stephanie said she feels “really upset” and “angry” with herself. In these remarks Rachel and Stephanie exhibit what another participant, Casey, described as her “inner critic,” the surveillant, judging self that is most vigilant when women express anger or discontent within intimate relationships (O’Grady, 2005). Indeed, for the majority of the women interviewed, both lesbian and heterosexual, it was the impact of their premenstrual moods on others that ignited self-castigation. As Leah commented, “I feel remorse, because it’s like, ‘Oh, I’m really sorry,’ because I’ve visibly hurt somebody’s feelings, and I don’t like to do that; that’s not who I am as a mature, loving person.” In these accounts women adopt the subject position of the menstrual monster. They also accept the medical narrative of premenstrual change as illness, which they categorize as PMS.

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The above self-descriptions stand in stark contrast to the acceptance of the premenstrual self that is evident in Tracy’s account: “As human beings, it’s good to have enforced emotional periods, I suppose ... I suppose I’ve been aiming at being a bloke, to some extent, trying to keep everything sane. But now I think I embrace it as an opportunity to just rest and be more in tune with myself and be emotional. I think I was probably fighting being emotional in the past, and that’s what caused so much discomfort and stress.” Tracy explicitly resists the premise that underwrites biomedical conceptualizations of PMS: normal emotions are constant, and fluctuations in mood, sensation, or reactions to others are a failing or pathology (Chrisler, 2008; Ussher, 2003b). In Tracy’s statement, premenstrual changes are acknowledged and accepted. The predictability of her changes facilitates understanding. Monica echoed this insight: “I kept a note of my cycle regularly so that I would know when I was going to start feeling tired so I could explain to myself what was happening.” Olivia told us, “Sometimes I actually look at it in advance and say, ‘Well, my periods are due around here, so my PMS would probably be due around here, so I’ll be more aware around that time.’” Sophia, meanwhile, said that being aware of premenstrual change “has really helped me understand it more. It’s helped me normalize it.” For a number of our participants, normalization resulted in a strategy of tolerance of negative premenstrual change, which was recognized to be temporary. As Helena told us, “I would just go with it and go, ‘Oh, look, in two days [laughs] this will be fine’ [laughs].” Judith said, “You just sort of have to keep going.” A primary function of awareness of premenstrual change among participants appeared to be to allow premenstrual emotions to be judged as reasonable and, therefore, to resist the discursive positioning of the premenstrual woman as mad, bad, or dangerous (Chrisler & Caplan, 2002). Olivia told us, “It’s a weight off my mind. ’Cause at first I used to think I was going a little crazy … it’s helped me deal with – ‘those are PMS feelings.’” Similarly, Danni said she told herself, “Oh, okay, I know now, you’re not actually the wicked witch.” Participants in the present study who did not describe anticipatory awareness of negative premenstrual change were more likely to self-pathologize, describing themselves, when they were premenstrual, as “crazy” or “mad” (Stephanie); a “nut case,” “absolute psycho,” or “schizo” (Sandra); “out of my mind” or “a complete loony” (Joanne). Even those in the study whose self-understanding resisted the biomedical positioning of PMS as pathology did not necessarily embrace premenstrual mood change, however. All of the women adopted the diagnostic

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category of PMS to explain their premenstrual experiences. Yet, PMS was not universally understood as an illness. Rather, some saw PMS as “natural” or a reflection of “true feelings” about domestic, relationship, or work issues. For example, Olivia said her premenstrual anger was about “housework, and my role as a woman, and why do I have to do all of this. Things that I kind of repress ... come out to the surface.” Caitlin told us that “the only time I ever see people as being incompetent is when I have PMS! [laughs] Otherwise I keep blaming myself for everything.” In these accounts women not only avoid taking up a sick role – wherein their bodies (or minds) warrant medical treatment – but also subvert the practices of acquiescent femininity in which they engage during the remainder of the month. PMS thus signifies rebellion and resistance, rather than weakness and pathology, and breaks in self-silencing become a sign of women’s agency. Recognition and acceptance of negative premenstrual change can also give women permission to engage in coping strategies to avoid or reduce premenstrual distress. For example, Merrin told us, “I’ll actually give myself permission to actually go and lie down for half an hour. Even half an hour will make a substantial amount of difference.” The discourse of PMS as normal or natural, then, can facilitate agency in relation to premenstrual change through care of the self, avoidance of stress and conflict, and escape from the materiality of relational demands and responsibilities. Below we discuss each of these strategies in greater detail.

Resisting Pathologization: Facilitating Coping with Premenstrual Distress av o i d a n c e o f s t r e s s a n d c o n f l i c t

Biomedical constructions of PMS leave women with only one coping mechanism for negative premenstrual change: pharmaceutical interventions. Currently, serotonin reuptake inhibitors (SSRIs) are the medical treatment of choice (Steiner & Born, 2000). Resistance of a pathologizing discourse opens up the possibility of alternative coping strategies that focus on altering the woman’s environment and addressing the triggers of premenstrual distress. The premenstrual coping strategy most commonly reported by participants was avoidance of people or situations that had the potential to provoke anger and irritation, in which Joan felt “rile[d] up,” and Judith as “trapped” and like a “caged tiger or something, pacing,” when she was premenstrual. Judith said, “[Though] I love my children to death, [it is]

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probably the only time that I ever feel that I would just want to get up and walk away and go away by myself for a couple of days.” Successful planning can lead to the execution of this desire to avoid stress. For example, Rachel reported, “If I can avoid something on that week, I will,” and Sophia told us, “The kids … I try not to get into conflict, into confrontation with them.” While accounts of premenstrual avoidance were most commonly reported in a family or couple context, a number of participants gave accounts of avoidant coping in a work context. For example, Melanie said, “[I feel] more annoyed by other people, or what they say affects me more, so I guess I sort of withdraw a bit, especially at work,” and Kathryn said that she “just diverted [her] phone” if she felt on “an uneven keel” premenstrually. Avoidance has been described as “maladaptive” and a reflection of “trait anxiety” in previous research conducted with women who report PMS (Kuczmierczyk, Johnson, & Labrum 1994, p. 304) – judgments that explicitly pathologize this style of coping. However, participants in the present study described diminishing negative emotional experiences through anticipatory awareness and subsequent avoidance of situations that might provoke anger or distress. This suggests that such avoidance involves effective self-regulation (Folkman, Lazarus, Dunkel-Schetter, DeLongis, & Gruen, 1986), rather than reflecting maladaptive or neurotic tendencies in the woman. Anticipation or avoidance of stressful situations was not always possible, however, and many participants gave accounts of experiencing unexpected situations that elicited premenstrual anger or irritation. As a result, they described coping with negative premenstrual emotion by exerting self-control and leaving a situation to avoid escalation of conflict when they had become angry. For example, Katie described being in the kitchen, “and … I can remember just getting so cranky, I just went in and sat down in our formal lounge room just to stay away from everyone, because I was just so angry.” Similarly, Lillian described being angry with her two boys but feeling “all right” once she “got away from the situation.” This exertion of self-control was not without emotional effort for women, as Casey reported: “It’s taken every ounce of energy and sort of restraint that I’ve got.” In some ways the emotional cost of the self-control exerted by participants is reminiscent of the pattern of self-silencing that Jack (2001) has associated with women’s depression, where women repress their own feelings, in particular their anger, and put the needs of others first in order to avoid relationship conflict or loss. Many participants in the present study were overt in their descriptions of self-silencing as a premenstrual coping strategy. Thus, Melanie told us, “PMS time I’ll start to think, ‘Oh, tummy’s

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blowing up, right, I’m feeling a bit irritable, just try and keep a lid on it’”; Jill talked about training herself to “step back and chill” so that she didn’t “explode”; and Rachel said, “I might just keep it in and just be like angry within myself about the situation.” In some accounts self-control was positioned as necessary for the protection of others, a result that conforms with Jack’s (2001) description of selfsilencing. For example, Alice described “hibernating” because of a fear of being unable to “rein [herself] in” and wanting to avoid “hurting people with words,” because “it’s not their fault.” However, commonly, participants said they used premenstrual self-silencing and avoidance of contact with others to protect the self. As Fiona reported, “I will avoid having contact with other people or putting myself in situations where I know that I’m going to be vulnerable.” Similarly, Kathryn said, “I just wanted to really minimize anything that would impact on me ’cause I knew I was really sensitive.” These responses suggest that in accounts of premenstrual change self-protection can be a motivation for self-silencing, a finding that challenges the assessment of self-silencing as simply a manifestation of policing the self in the name of regulating the boundaries of acceptable femininity (see Ussher, 2004). In our study women manifested awareness of their own sensitivity or reactivity during the premenstrual phase of the cycle and adopted the discourse and material practice of care of the self. ca r e o f t h e s e l f

While many participants reported wanting to be alone premenstrually to avoid difficult situations or people, women also craved solitude to care for the self. As Jill told us, “solitude is wonderful, being by yourself, doing your own thing.” A number of women described wanting time out in order to be “comfortable” (Joan) or to engage in “self-preservation” (Jackie). As Jackie continued, “you just need rest, you know. And you don’t feel like being cheered up, because you’re just … just want, you know, a bit of peace.” Joan described the premenstrual phase as a time when she would go to the ocean, as “the best, most calming thing that I can do for myself.” Katie described spending a long time in the shower “listening” to herself and allowing herself to forget that she should be “doing things in the kitchen, and the kids are at you.” A number of women also described a combination of timeouts and exercise as management strategies to avoid or reduce premenstrual distress. Jocelyn achieved this through gardening: “I’ve got a really big garden that I maintain and I like to take myself out there … and yeah I suppose I do like to be a little more alone around that time.” Maggie described going for a walk for similar reasons: “Sometimes I just like to go

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out and go for a walk and just put the headphones on, I find that helps; getting out by yourself makes a difference.” These accounts are evocative of the “room of one’s own” that Virginia Woolf identified as being so important to women’s creativity as well as to their sanity (Woolf, 1957). The women’s descriptions of the benefits of being alone also resonate with more recent descriptions of alone time as an essential “health promoting resource for women” (Forssén & Carlstedt, 2006, p. 175). However, in accounts of coping with negative premenstrual change, women did not report that they literally needed a room of their own in order to take time out from others; they could achieve solitude and divest themselves of responsibilities by engaging in gardening, watching television, reading a book, taking a long shower, or exercising. While exercise has previously been acknowledged to be an effective coping strategy for premenstrual distress (Kirkpatrick, Brewer, & Stocks, 1990), these accounts suggest that the absence of interaction with others and the ability to focus on care of the self through exercise also allow women to regulate negative premenstrual change and avoid premenstrual distress. Many participants also described using rest and a healthy diet as proactive coping strategies for self-care and reducing premenstrual distress. Melanie told us, “I try to get more sleep and make sure that I eat well,” and Amy said, “What I’m trying to do around those physical symptoms [is] just really try and eat very well and get rest.” Tracy had a similar approach: “Not drinking caffeine beverages. Alcohol. Avoiding alcohol. Sugars. Avoiding sugars. And eating sort of a clean diet really makes a massive difference. To me, anyway.” A number of women also described controlling food cravings as an active coping strategy: “I really, really want to be eating all the chocolate and all the pizza in the world, but if I do, it’s going to make me feel crappier. So you’ve got to do these things yourself” (Shona). “I think I’m more aware of that, and so I don’t go for the chocolate and whatever. I go for something that’s warm or, yeah, that’s healthy. And then I’d feel better” (Nina). In the context of coping with negative premenstrual change these approaches can be framed as a positive strategy of self-regulation, reflecting self-awareness of the negative impact on premenstrual emotions of a diet high in caffeine, alcohol, fat, sugar, or carbohydrate (Bussell, 1998). However, these strategies can also be conceptualized as examples of bodily regulation influenced by the cultural construction of women as needing to be slim and in control of their eating (Bordo, 1993), suggesting that there is a fine line between self-surveillance of eating behaviour and self-care. A substantial proportion of women also reported taking self-prescribed herbs (such as St John’s Wort, Vitex, or evening primrose oil) and vitamins

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or minerals (in particular B-complex and magnesium) as part of their premenstrual self-care. The majority reported satisfaction with such remedies. However, as Jacinta commented, “I don’t know whether it’s a placebo, or whether it’s actually doing anything.” A small minority of women had also been prescribed the contraceptive pill and, in the case of one participant, anti-depressants to reduce premenstrual distress. However, all of these dietary-supplement or pharmaceutical coping strategies were also accompanied by psychological or behavioural strategies, demonstrating that coping is complex and multifaceted (Folkman & Lazarus, 1985). e s c a p i n g r e l at i o n a l d e m a n d s a n d r e s p o n s i b i l i t i e s

Participants also described escape from relational demands and responsibilities as a means of coping with premenstrual changes. As Eleanor told us, “I guess that’s the time where I feel, ‘Hey, I’m just not feeling a hundred per cent and I just want you all to stop putting demands on me,’ you know? The son, the dog, the work, everybody.” Merrin described taking time premenstrually to rest and contrasted this with the ways in which she coped with family responsibilities during the rest of the month, when she paid little attention to her “own bodily state” and prioritized the needs of her children. “I’ve got three children, and they’re a little bit older now, but my attentiveness [is] to their needs, and I might deny things like realizing I need to go to the toilet, for example – I can carry that for a long period of time – or even my own hunger or whatever ... You just become by nature more outwardly focused, so, just being attentive to my own bodily state, even very basic functions, I think I’ve lost my capacity to sort of pay attention to those things.” Feminists have pointed out that the materiality of the mothering role, combined with the predominant cultural representation of the mother as “ever-bountiful, ever-giving, [and] self-sacrificing” (Bassin, Honey, & Kaplan, 1994, p.  2), is a factor in premenstrual distress (Ussher, 2011). Merrin implicitly understood this when she legitimized taking time out for herself through recognizing premenstrual change. She was thus temporarily absolved from responsibility to care for others, even if only for “half an hour,” which allowed her to self-regulate her premenstrual emotions and reduce distress. Many women were only able to legitimize time out from responsibilities when they were premenstrual. For example, Eleanor told us that her premenstrual week was the only time she allowed herself to “veg out in terms of not doing the washing up after dinner, or not bothering to do the ironing and then pay the consequences of ironing as we go.” Similarly, Olivia

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said, “I’ll try and take things easy in the house a bit ... I’ll ask for a bit more help,” and Jackie said, while she normally worried about housework, “I just don’t care. Don’t cook dinner and things like that.” In their accounts the women reveal the critical self-surveillance in which they engage for three weeks of the month, wherein they judge themselves against the standard of the self-renunciating, competent, and capable good wife and mother (O’Grady, 2005) for whom having “a lazy day” violates standards of idealized femininity (Chrisler, 2008, p.  8). Participants described being premenstrually “a little easier on myself … being a little kinder” (Olivia), “gentler on myself ” (Celia), “a little bit nicer to myself ” (Danni), and “self-indulgent and precious” (Nancy), and “cutting myself a little bit of slack” (Merrin), suggesting that critical self-surveillance is relaxed at this time. This relaxation serves to further legitimate engagement in coping strategies that function to care for the self in order to avoid or reduce premenstrual distress. Feminist writing invariably casts women’s self-silencing and self-policing of emotion as a reflection of internalized archetypal discursive representations of the calm, controlled, and capable woman (Jack, 1999; O’Grady, 2005). As self-policing is normalized, the boundaries of idealized femininity are maintained and regulated, as are the behaviour and emotions of individual women, who fear being positioned as “other” if they fail to conform. However, a more complex and nuanced picture of self-regulation emerged from our participants’ stories. While all of our participants positioned their negative premenstrual emotions as PMS, thereby adopting idealized constructions of femininity and a biomedical discourse, they attributed premenstrual reactivity, anger, or the desire to be alone to relational factors or to stresses and responsibilities in their lives. Therefore, the women could engage in active coping to reduce distress. Equally, while premenstrual dietary control can be conceptualized as adherence to misogynistic beauty ideals of thinness (Jeffreys, 2005), and consumption of dietary supplements and medication as acceptance of the pharmaceutical industry’s “disease mongering” through the active encouragement of the pathologization of “ordinary ailments” (Moynihan, Heath, & Henry, 2002, p. 324), participants positioned both as self-care practices that were part of a broader range of strategies for premenstrual coping. Their constructions, which imply agency, are analogous to what Sue McKenzie-Mohr and Michelle Lafrance call the “tight-rope talk” (McKenzie-Mohr & Lafrance, 2011), wherein women construct themselves as both “agents and patients: both active and acted upon” (p. 64). This double-edged talk enables women to take credit for agency in coping and

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to deflect blame for having PMS. For McKenzie-Mohr and Lafrance (2011, p. 66), this “both/and” position enables the re-authoring of emancipatory counter-stories that challenge oversimplifying either-or binaries that cast women as “agent or patient,” “powerful or powerless,” or, in the case of PMS, premenstrual sufferer or non-sufferer or coper. As Catrina Brown (2007) has argued, the “both/and” position “honors women’s agency and power while not minimizing the impact of oppressive social discourses and social relations” (p. 275). “Both/and” allows acknowledgment of the materiality and intra-psychic consequences of premenstrual distress and the women’s agency and power in anticipating and coping with premenstrual change. Adopting the subject position “PMS sufferer” thus evokes connotations of the monstrous feminine and makes meaning of the distress of women by legitimizing their experiences as real. From this perspective, reproduction and resistance of discourse overlap rather than remaining discrete and separate processes (Day et al., 2010).

The Inter-subjective Construction and Experience of PMS Consistent evidence points to PMS as an inter-subjective experience, with the constructions and responses of partners affecting women’s experience of premenstrual change. Supportive partners can alleviate premenstrual distress, and unsupportive partners can exacerbate it (Jones, Theodos, Canar, Sher, & Young, 2000; Ussher & Perz, 2013). In the present study, responses by partners, children, and close friends had an impact on the women’s ability to resist the pathologization of premenstrual emotion and to engage in coping strategies to reduce premenstrual distress. A number of participants gave accounts of family members facilitating time out. For example, Joan told us, “I don’t know quite what do to with myself sometimes, and by saying, you know, ‘I need to withdraw,’ he [partner] understands.” Similarly, Susannah said, “We both realize it’s a very good thing to have your own time.” Caroline described her children as saying to her, “Mum, do you think you should go for a run today?” if she was in a “cranky mood,” and Fiona said, “I will sort of go off and shut myself in the toilet and cry! [laughs] And usually I feel better after that, you know. And my husband knows how to deal with it … He’ll sort of go, ‘Well, give her some space and she’ll get over it.’” Support for negative premenstrual change (what some women call PMT, or premenstrual tension) can also consist of spending time with a premenstrual woman and facilitating her self-care. For Sheridan this took the form a “pyjama and TV night” with her friend: “I’ll say, ‘Okay, I’ve got PMT. Do

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you want to come over here?’ And it’s pyjama and TV night. So we’ll have doonas [bed covers] ready, and it’s a very kind of comforting understanding that we’re just going to be sitting around and trying to keep warm.” Single women reported that it was easier to engage in self-care, as they did not need to negotiate having their “own space.” Celia told us, “Yeah. I want more of my own space. So they feel like they’re intrusive.” When asked, “Is that something that isn’t easy to get?” she replied, “My own space? It is when you’re single.” Single women’s ability to take time out may partly explain the previously observed finding that women who are single are less likely to report premenstrual distress (Dalton, 1977). While there were no notable differences between accounts by heterosexual and lesbian women of premenstrual change and coping, all of the interviewees who were in lesbian relationships reported that their partners were supportive and able to empathize with and understand premenstrual change, thus facilitating premenstrual coping (Ussher & Perz, 2008). Shea commented, “In terms of the response … it’s just really understanding and, I guess, supportive … It’s just like, ‘This is how I’m feeling. That’s okay.’” Similarly, Linda told us, “I’m extremely lucky that Helen [partner] is an extremely understanding person, and so I get what I need at that time.” Women in lesbian relationships were also more able to divest themselves premenstrually of responsibilities in the home, with greater support from their partners. For example, Jocelyn said that her partner was “very understanding” and that her partner would do the “housework on those days (and) doesn’t expect too much from me.” Bec described worrying about household finances when she was premenstrual, and her partner saying, “Don’t worry about it, I’ll fix it up, and we’ll work it out later.” Casey described how her partner would “take some of the responsibility,” cook dinner, and run her a bath when she was premenstrual, allowing Casey to “just be.” In contrast, only about half of participants in heterosexual relationships reported supportive reactions from male partners. This support was most common in contexts where women were able to name PMS and articulate their premenstrual needs. Joan said of her relationship with her husband, “We have ways of dealing with it and supporting each other for actually being able to recognize what’s going on and that we know that it will pass, and maybe eventually it will get better.” Only a small proportion of the heterosexual women who asked, premenstrually, for practical support in the home received it. For example, Janice told us, “On my anxious day … he is really supportive, like, he’ll do the housework, or dinner, and all kinds of stuff.” Merrin described “a couple of occasions where I’ve felt so

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unwell, when I was so exhausted, that I’ve just said that I can’t cook dinner tonight, and I just sort of left him to it, with very little notice, and he mobilized take-away” because “he’s not a good cook.” These descriptions support previous research showing that PMS is an inter-subjective experience and that supportive partners can alleviate premenstrual distress, and unsupportive partners can worsen it (Jones et al., 2000; Ussher, Perz, & Mooney-Somers, 2007). Partners who recognize premenstrual distress and support women in taking time for themselves challenge gendered discourses of the self-renunciating good woman, thus allowing women’s self-policing to be relaxed at this time of the month. Our finding that this was more common in lesbian relationships can be linked to previous research reporting that women in same-sex relationships conform less often to traditional feminine gender roles (Bailey & Zucker, 1995) and experience more often an egalitarian relationship structure (Green, Bettinger, & Zacks, 1996) that is manifested in a capacity for mutual empathy, empowerment, and relational authenticity (Mencher, 1990), as well as an adaptability in dealing with both relational needs and domestic tasks (Connolly, 2005, p. 270). The positive impact of a same-sex relationship on women’s premenstrual changes suggests that the construction of femininity within (or outside of) a heterosexual matrix influences women’s ability to exert agency in relation to premenstrual change. Gender, then, is not something that we are but something that we do (Butler, 1990), a performance invariably negotiated differently outside of a heterosexual matrix, where different role expectations, opportunities, and constraints apply. Resisting Diagnosis as a PMS Sufferer: The Cultural Context of Premenstrual Change Constructions of menstruation and premenstrual change can vary across cultures, further illustrating the socially constructed nature of reproductive syndromes. The importance of cultural context was illustrated by the findings from our research conducted in 2010 into the constructions and experiences of sexual and reproductive health among Assyrian and Karen women who had arrived in Australia as refugees (Ussher et al., 2012). Forty-two women participated in five focus groups each made up of between seven and nine women. Participants were recruited through local community organizations. The Assyrian community is made up of Syriac-speaking Christians who identify as the Indigenous population of Iraq, and whose migration to Australia was precipitated by conflict in the region from the late 1980s. The majority of Karen community members had migrated to

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Australia from Burma-Thailand border camps, where they had sought shelter from persecution in Burma; they are primarily Christian, with a small number identifying as Buddhist. In two of the focus groups, one Karen, and one Assyrian, the average ages were twenty-five and twenty, respectively, and the majority of participants were unmarried. In the remaining Assyrian group, the average age was forty-five, and all women were married or widowed. Similarly, in the remaining two Karen groups, the average ages were forty-one and thirtyfive, and the majority were married. The Assyrian participants had arrived in Australia 7.5 years before, on average, having spent three to five years as refugees in Syria or Jordan. The Karen participants had arrived 3.5 years before, on average, having spent between ten and eighteen years as refugees in Thai border camps. Overall, participants had two children, on average, and had completed ten years of schooling. In preparation for the focus groups we sought cultural insight, advice, and guidance on the research method and questions from four key informants, two from each community. To facilitate stakeholder involvement and wider feedback on the study, we also formed a steering group that included colleagues and community members who had worked in relevant areas of health or health psychology. The focus-group interviews were semistructured and lasted between one and one-and-a-half hours. The interview schedule included open questions on women’s experiences of sexuality and sexually transmissible inflections; fertility; post-natal depression; abortion; contraception; menstruation; and help-seeking behaviour. In addition to the participants, the groups included two facilitators (the authors), an interpreter, and a community health worker who organized the group, with childcare provided. The English-spoken sections of the interviews, including participant comments and translator interpretations, were professionally transcribed verbatim. The transcripts were integrity checked by listening to the audio recording and reading through the written text. We used thematic decomposition (Stenner, 1993) to analyse the data, as described above. When asked about negative premenstrual change, all groups of women acknowledged its existence, but only the women under age twenty-five identified the experience as “PMS.” This finding is illustrated in the following account emerging from one of the Assyrian focus groups: INTERVIEWER 1: Women, some women, talk about feeling different before

their periods, so can feel angry, or irritable, or sad – PARTICIPANT 8: Yeah. Not so stable.

214  Jane M. Ussher and Janette Perz INTERVIEWER 1: Is that an experience any of you have had? PARTICIPANT 4: Yes, yeah, I am like that.

[Participants talking in the background] PARTICIPANT 3: Tired, just a bit tired, and sick, and irritable. PARTICIPANT 5: Yeah, yeah.

[Participants talking in first language – 16 seconds] INTERVIEWER 1: So you’ve had that experience? PARTICIPANT 1: Yeah, yeah. INTERVIEWER 2: Do you have a word or a way of describing that to your

friends or to your family? [Interpreter talking in first language –11 seconds] INTERPRETER: You mean, what do you mean, a word to describe – INTERVIEWER 2: Yeah, do you call those feelings something?

[Interpreter talking in first language – 4 seconds] PARTICIPANT 8: No. PARTICIPANT 1: No, doesn’t have a name.

In this exchange women acknowledge premenstrual change, describing both physical and psychological changes, but agree that there is no name for it within their cultural group. A similar account emerged from the interviews with Karen women: INTERVIEWER 1: In Australia some women experience what they call

premenstrual syndrome or PMS. Have you heard of this? [Interpreter and participants talking in first language – 29 seconds] PARTICIPANT: Never heard of that. [laughs] INTERVIEWER 1: What this is, some women say before their periods they

feel different in themselves in their moods, so they can feel tense or angry or depressed – PARTICIPANT ?: Oh, yeah.

Is It Normal or PMS?  215 INTERVIEWER 1: Is that something you have ever experienced? Yes? PARTICIPANT ?: Yeah.

[Interpreter and participants talking in first language – 11 seconds] PARTICIPANT ?: Yeah, we experience this. INTERVIEWER 1: You have that? INTERVIEWER 2: Do you have a word or a way of describing that to other

people? [Interpreter and participants talking in first language – 6 seconds] PARTICIPANT ?: So, yeah, no name for that. [laughs]

Only one of the younger Assyrian women, participant 1, reported labelling her premenstrual change as “PMS.” PARTICIPANT 1: Well, when I get my period I get frustrated [chuckles]

and that – PARTICIPANT 2: She PMSs. PARTICIPANT 1: PMSing a lot, sometimes, not all the time. So I like to stay

away from people so I won’t yell at them, so that’s why they know when I have my period – my mum doesn’t talk to me.

These accounts support the view that PMS is a culture-bound syndrome. The majority of Karen and Assyrian women reported premenstrual change in the interview, but only the younger women, who were educated and acculturated in Australia, described this change as PMS. None of the women described premenstrual change as a concern that would warrant comment or medical attention. This finding was illustrated by the laughter that accompanied the discussion of premenstrual change, as well as by women’s quizzical expressions when we raised the subject of PMS. The study demonstrates that the lived experience of premenstrual change involves an interaction among several dimensions, including materiality (emotional and physiological changes); discourse (language used to describe such changes); and the intrapsychic (women’s negotiation of premenstrual change and levels of distress). None of these dimensions can be conceptualized without the others. In the accounts of study participants, menstruation was a “normal” experience and a taken-for-granted aspect of womanhood. However,

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menstruation did have significance in women’s lives. All of the participants were in agreement that coital sex did not happen during menstruation, positioning such sex as “dirty,” “not clean” (Karen), “not in our beliefs,” or as a risk of “infection” (Assyrian). These descriptions support previous reports that taboos associated with sex during menstruation originate in hygienic, health, aesthetic, or moral beliefs (World Health Organization, 1981). However, one Assyrian participant said, “It’s a very good [chuckles] – it’s a very good excuse so they won’t touch us at that time,” a comment that was met with laughter within the group. This suggests that some women also utilize cultural taboos associated with menstruation (Ussher, 2006) to exert agency in relation to coital sex, allowing them to say no without confrontation with their husbands or conflict with cultural constructions of marital sex as unquestioned (Ussher et al., 2012). Such agency stands in contrast to Western feminist theories of the impact of menstrual taboos, which are deemed to be detrimental to women’s experience of the reproductive body (Fahs, 2011). This contrast further demonstrates that we must conceptualize the meaning of menstruation and negotiation of menstrual practices within a cultural context. Conclusions The findings of these two studies support the conclusion that self-diagnosis as a PMS sufferer and resistance of such diagnosis are material-discursiveintrapsychic phenomena made up of a combination of embodied and psychological changes experienced premenstrually; of discursive constructions of such change as pathology (or as normal); and of women’s intrapsychic negotiation of both experience and discourse. In the first study, in response to Joan Chrisler’s (2008) call for more research on how and why women fear losing control, and “how to help them to leave that fear behind” (p. 2), we examined the experiences of Australian women who self-diagnose as having PMS. Biomedical and broader cultural constructions of negative premenstrual emotion as pathological provide an explanation of why women fear loss of control premenstrually. However, the majority of participants we interviewed reported a consistent pattern of negotiation and management of premenstrual distress, suggesting that they were able to leave this fear behind. From their responses we can surmise that PMS is not a fixed unitary illness but rather an ongoing process of negotiation. Distress levels are associated with women’s particular construction of premenstrual change and with the strategies they engage in order to cope, within the context of culture and relationships.

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PMS is thus not the underlying pathology that causes distress, but is the distress itself – a diagnostic label given to describe negative premenstrual change (Jones et al., 2000). Women’s resistance and coping in the context of negative premenstrual change is also a material-discursive-intrapsychic process, with each of these aspects of experience irrevocably interconnected. The women in our studies engaged in a range of psychological coping strategies, including selfawareness; recognition and acceptance of premenstrual change; resistance of a pathologizing discourse; and strategies to avoid or reduce premenstrual distress. In addition, it was clear from this research that the material context of women’s lives, including over-responsibility, partner support, and the presence of relational or social stressors, plays a significant part in both distress and women’s ability to adopt coping strategies. While many Western women, particularly those with children, position anger or irritation about burden of care as a premenstrual symptom (Ussher, 2003a), we can reframe these emotions as a legitimate reaction to over-responsibility or absence of partner support in the home. This interpretation is reminiscent of a cartoon described by Figert (2005) of “an obviously worn-out woman holding a screaming child and telling her husband (sitting in the lounge chair and reading the paper) that ‘this is stress, not PMS’” (p. 110). Figert concludes that we need a “return to a menstrual hut … and its monthly release from traditional women’s roles of cooking, cleaning and family duties” (p. 110). This release is something that some of the participants in the first study (of self-diagnosed PMS sufferers) gave themselves permission to take, adopting the discursive construction of PMS as a time when self-care is permissible. Their legitimization of taking time out from daily stress or responsibility demonstrates psychological resistance to gendered discourse that emphasizes women’s self-renunciation (Jack, 1991) and women’s selfcare at other times of the month as selfish (O’Grady, 2005). The “resource accumulation” (Aspinwall & Taylor, 1997, p. 420) required to enact resistance and engage in coping strategies is also gendered. However, some women interviewed in this first study, in particular women in heterosexual relationships, did not have the material resources or social support needed to avoid stress or engage in self-care premenstrually (Ussher & Perz, 2013). These women may not appear to have the “willpower … skillpower … and self-efficacy” that Chrisler (2008, p. 2) deems essential to self-regulation. On the surface at least, they pathologize premenstrual anger or the desire to be alone and see their inability to emulate the ideals of the competent, coping superwoman as a failure. However, rather than positioning these

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women’s self-descriptions as evidence of individual psychological traits or limitations, we can conceptualize them as reflections of the absence of material support or the internalized gendered constructions of femininity in which the superwoman is the norm (Chrisler, 2008) and it is considered that there is something wrong with women who are angry, unapproachable, or inward turning (Chrisler & Johnston-Robledo, 2002). Many of the women whom we interviewed about sexual and reproductive health in the study of recent Assyrian and Karen women immigrants to Australia also described lives within which there was little freedom from responsibility. For these women, this finding reflects inequities in social class, culture, and gender that have been associated with the development of women’s psychological distress generally (Ussher, 2010) and draws attention, once more, to the material context of women’s lives, and to the intersection of gender and other identities in the shaping of women’s subjectivity. Our interviews in this second study demonstrate that not all women associate the lived experience of negative premenstrual change with a diagnosis of PMS, confirming previous research conducted with women living in a range of Asian cultures (Chandraratne & Gunawardena, 2011; Dennerstein et al., 2010; Wong & Khoo, 2011). This finding may be the result of the absence of discursive resources to describe premenstrual change; that is, in some cases, women’s lack of awareness of the diagnostic category of PMS, combined with cultural practices that do not encourage women to attribute distress to the reproductive body, results in different lived experiences. In this vein, many of the women whom we interviewed described experiencing distress after the birth of a child but had little knowledge of the diagnostic category of post-natal depression. There was general acceptance that women should soldier on rather than express post-natal distress. This may, in turn, influence the lived experience of change or distress associated with the reproductive life cycle. As Edward Shorter (1992) argues, symptoms that are accepted as legitimate signs of illness or madness, what he deems the “symptom pool,” are particular and peculiar to a specific culture at a particular point in time. By deeming certain symptoms “illegitimate,” cultures discourage patients from developing them, as few enjoy being positioned as “undeserving” or as not having a “real” medical problem. In this scenario Shorter finds “great pressure on the unconscious mind to produce only legitimate symptoms” (p. x). Cultural context, then, and the cultural regulation of women’s distress may serve to reduce the very existence of negative premenstrual change and obviate attribution of such change to the reproductive body if it does occur. The symptoms

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of PMS reported by many Western women may be experienced as embodied or psychological changes by non-Western acculturated women, but they may not be deemed signs of sickness or legitimate reasons for self-care or treatment and may not lead to self-diagnosis as a PMS sufferer. In our research we did not ask our Assyrian and Karen interviewees how they engaged in self-care or how they expressed psychological distress. These questions need to be explored in further research. Similar arguments about the cultural construction of distress have been made in relation to the diagnostic category of depression, which is also very much a Western cultural concept. There is no word for “depression” in many non-Western cultures (Marsella, 1981), and many so-called symptoms of Western depression are not expressed, or positioned as signs of distress, in many non-Western contexts (Jadhav, 1996). Rather, suffering is signified by bodily or psychological complaints as varied as a failed or painful heart (India) (Fenton & Sadiq, 1991), snakes biting or crawling on the body (Javed, 2004), chest pains (China), burning on the soles of the feet (Sri Lanka), semen loss (India), ants crawling inside the head (Nigeria), or soul-loss (Hmong) (Marecek, 2006, p. 289). Indeed, one explanation for the differences in reported rates of depression between White and South Asian or African American women is that distress is more likely to be somatized in the non-White groups (Brown, Schulberg, & Madonia, 1996; Wilson & MacCarthy, 1994) or at least presented as physical problems to medical general practitioners, because physical problems may be seen as having greater legitimacy within some non-White cultures (Burr & Chapman, 2004). Depression is therefore less likely to be formally diagnosed. The very meaning and construction of emotional states has also been reported to vary across cultures. Many emotions commonly described by English speakers have no parallel in other languages (Russell, 1991). For example, anger and sadness are not distinguished in many African languages (Leff, 1973), and fear and shame are not differentiated by the Australian Gidjingali people (Pilgrim & Bentall, 1999). If we can question the very existence of emotions outside of language and culture, we can certainly question the existence of a uniform pathology, such as depression or PMS. Discursive constructions of gender and of PMS are implicated in the very awareness among women of premenstrual change as a phenomenon worthy of categorization, leading to self-diagnosis as a PMS sufferer or to resistance of pathologization. These discursive constructions include the contemporary Western construction of change, in particular premenstrual change, as pathology; constructions of “good” women as self-sacrificing,

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self-controlled, and caring; and constructions of roles within heterosexual relationships. The frames we use to understand women’s lived experiences of premenstrual change are thus similar to those that help us account for women’s madness and for multiple pathologizations of women’s reproductive bodies (Ussher, 2006, 2011). Excavating the genealogy of the cultural and historical discourses and discursive practices that inform embodied experiences (following Foucault) is a means of validating complex physical and emotional phenomena reported by women across cultures in relation to their reproductive lives. The findings of these two studies have implications for the resistance of dominant cultural discourses about premenstrual change in the wider social context. While some women interviewed in this research were engaging in resistance of premenstrual pathologization on an individual basis, there is a need for the development of resources that can facilitate this process on a collective level. Supports for shared resistance could include widely available health information that challenges myths about PMS – including the notion that it is a universal concept – and yet informs women, and their partners, about potential variability across the menstrual cycle. This educational material would challenge the stigma of PMS as madness, through normalizing the range of women’s experiences and opening channels of communication that allow women to receive support or take time out when they are premenstrual. At the same time it is important to avoid creating distress by pathologizing premenstrual changes that may not be noticed, and not pathologized, as we saw in the case of the Assyrian and Karen women we interviewed. The public naming of premenstrual distress as a culture-bound reaction to stresses in women’s lives can serve a similar purpose. The circulation of information about positive aspects of premenstrual change would also serve to challenge negative discourse about PMS: information about premenstrual increases in creativity and energy, as well as the notion that the premenstrual phase can be a time to access emotions that are repressed during the remainder of the month. The development of premenstrual art, cartoons, and YouTube videos can also serve to parody negative discourse about PMS, with recent research suggesting that young Western women who are informed by such media celebrate their premenstrual anger as a strength and embrace positive aspects of premenstrual change (King & Ussher, 2013). These findings also have implications for therapists and health psychologists who work with women who present with PMS or PMDD. Rather than positioning women’s premenstrual management strategies as maladaptive avoidance (Kuczmierczyk, Johnson, & Labrum, 1994) or as failure to cope with daily

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living, they could be reframed as effective coping strategies, and women encouraged to gain control through internalizing notions of the self as an “expert coper” who is developing strategies to effectively manage negative premenstrual change.

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Is It Normal or PMS?  223 Dalton, K. (1977). The premenstrual syndrome and progesterone therapy. London: William Heineman Medical Books. Davies, B., & Harre, R. (1990). Positioning: The discursive production of selves. Journal for the Theory of Social Behaviour, 20(1), 43–63. http://dx.doi.org /10.1111/j.1468-5914.1990.tb00174.x Day, K., Johnson, S., Milnes, K., & Rickett, B. (2010). Exploring women’s agency and resistance in health-related contexts: Contributors’ introduction. Feminism & Psychology, 20(2), 238–41. http://dx.doi.org/10.1177 /0959353509359761 Dennerstein, L., Lehert, P., Bäckström, T.C., & Heinemann, K. (2009, September). Premenstrual symptoms: Severity, duration and typology; An international cross-sectional study. Menopause International, 15(3), 120–6. Medline:19723682 http://dx.doi.org/10.1258/mi.2009.009030 Dennerstein, L., Lehert, P., Keung, L.S., Pal, S.A., & Choi, D. (2010, December). Asian study of effects of premenstrual symptoms on activities of daily life. Menopause International, 16(4), 146–51. Medline:21156851 http://dx.doi.org /10.1258/mi.2010.010035 Elson, J. (2002). Menarche, menstruation, and gender identity: Retrospective accounts from women who have undergone premenopausal hysterectomy. Sex Roles, 46(1/2), 37–48. http://dx.doi.org/10.1023/A:1016085501729 Fahs, B. (2011). Sex during menstruation: Race, sexual identity, and women’s accounts of pleasure and disgust. Feminism & Psychology, 21(2), 155–78. http://dx.doi.org/10.1177/0959353510396674 Fenton, S., & Sadiq, A. (1991). Asian women and depression. London: Commission for Racial Equality. Figert, A.E. (2005, April–June). Premenstrual syndrome as scientific and cultural artifact. Integrative Physiological and Behavioral Science, 40(2), 102–13. Medline:17393679 http://dx.doi.org/10.1007/BF02734245 Folkman, S., & Lazarus, R.S. (1985, January). If it changes it must be a process: Study of emotion and coping during three stages of a college examination. Journal of Personality and Social Psychology, 48(1), 150–70. Medline:2980281 http://dx.doi.org/10.1037/0022-3514.48.1.150 Folkman, S., Lazarus, R.S., Dunkel-Schetter, C., DeLongis, A., & Gruen, R.J. (1986, May). Dynamics of a stressful encounter: Cognitive appraisal, coping, and encounter outcomes. Journal of Personality and Social Psychology, 50(5), 992–1003. Medline:3712234 http://dx.doi.org/10.1037/0022-3514.50.5.992 Forssén, A.S.K., & Carlstedt, G. (2006). “It’s heavenly to be alone!”: A room of one’s own as a health-promoting resource for women; Results from a qualitative study. Scandinavian Journal of Public Health, 34(2), 175–81. Medline:16581710 http://dx.doi.org/10.1080/14034940510032428

224  Jane M. Ussher and Janette Perz Green, R.J., Bettinger, M., & Zacks, E. (1996). Are lesbian couples fused and gay male couples disengaged? Questioning gender straightjackets. In J. Laird & R.J. Green (Eds.), Lesbians and gays in couples and families: A handbook for therapists (pp. 185–230). San Francisco: Jossey Bass. Halbreich, U., Borenstein, J., Pearlstein, T., & Kahn, L.S. (2003, August). The prevalence, impairment, impact, and burden of premenstrual dysphoric disorder (PMS/PMDD). Psychoneuroendocrinology, 28(Suppl 3), 1–23. Medline:12892987 Hoerster, K.D., Chrisler, J.C., & Rose, J.G. (2003). Attitudes toward and experience with menstruation in the US and India. Women & Health, 38(3), 77–95. Medline:14664306 http://dx.doi.org/10.1300/J013v38n03_06 Jack, D.C. (1991). Silencing the self: Women and depression. Cambridge, MA: Harvard University Press. Jack, D.C. (1999). Silencing the self: Inner dialogues and outer realites. In T.E. Joiner & J.C. Coyne (Eds.), The interactional nature of depression: Advances in interpersonal approaches (pp. 221–46). Washington, DC: American Psychological Association. http://dx.doi.org/10.1037/10311-008 Jack, D.C. (2001, June). Understanding women’s anger: A description of relational patterns. Health Care for Women International, 22(4), 385–400. Medline:11813786 http://dx.doi.org/10.1080/07399330121599 Jadhav, S. (1996, Winter). The cultural origins of Western depression. International Journal of Social Psychiatry, 42(4), 269–86. Medline:9023609 http://dx.doi.org/10.1177/002076409604200403 Javed, N. (2004). Clinical cases and the intersection of sexism and racism. In P.J. Caplan & L. Cosgrove (Eds.), Bias in psychiatric diagnosis (pp. 77–9). Northvale, NJ: Jason Aronson, Inc. Jeffreys, S. (2005). Beauty and misogyny: Harmful cultural practices in the West. London: Routledge. Jones, A., Theodos, V., Canar, W.J., Sher, T.G., & Young, M. (2000). Couples and premenstrual syndrome: Partners as moderators of symptoms? In K.B. Schmaling (Ed.), The psychology of couples and illness: Theory, research, & practice (pp. 217–39). Washington, DC: American Psychological Association. http://dx.doi.org/10.1037/10360-008 King, M., & Ussher, J.M. (2013). It’s not all bad: Women’s construction and lived experience of positive premenstrual change. Feminism & Psychology, 23(3), 399–417. http://dx.doi.org/10.1177/0959353512440351 Kirkpatrick, M.K., Brewer, J.A., & Stocks, B. (1990, March). Efficacy of self-care measures for perimenstrual syndrome (PMS). Journal of Advanced Nursing, 15(3), 281–5. Medline:2332550 http://dx.doi.org/10.1111/j.1365-2648.1990.tb01814.x

Is It Normal or PMS?  225 Kuczmierczyk, A.R., Johnson, C.C., & Labrum, A.H. (1994, May). Coping styles in women with premenstrual syndrome. Acta Psychiatrica Scandinavica, 89(5), 301–5. Medline:8067267 http://dx.doi.org/10.1111/j.1600-0447.1994.tb01519.x Leff, J.P. (1973, September). Culture and the differentiation of emotional states. British Journal of Psychiatry, 123(574), 299–306. Medline:4746107 http:// dx.doi.org/10.1192/bjp.123.3.299 Marecek, J. (2006). Social suffering, gender, and women’s depression. In C.L. Keyes & S.H. Goodman (Eds.), Women and depression: A handbook for the social, behavioral and biomedical sciences (pp. 283–308). Cambridge: Cambridge University Press. http://dx.doi.org/10.1017/CBO9780511841262.014 Marsella, A. (1981). Depressive experience and disorder across cultures. In H. Triadis & J. Draguns (Eds.), Handbook of cross cultural psychiatry (pp. 237–89). Boston: Allyn & Bacon. McKenzie-Mohr, S., & Lafrance, M. (2011). Telling stories without the words: “Tight-rope talk” in women’s accounts of coming to live well after rape or depression. Feminism & Psychology, 21(1), 49–73. http://dx.doi.org/10.1177 /0959353510371367 Mencher, J. (1990). Intimacy in lesbian relationships: A critical re-examination of fusion. In J.V. Jordan (Ed.), Women’s growth in diversity: More writings from the Stone Center (pp. 311–30). New York: Guilford Press. Moynihan, R., Heath, I., & Henry, D. (2002, 13 April). Selling sickness: The pharmaceutical industry and disease mongering; Commentary: Medicalisation of risk factors. British Medical Journal, 324(7342), 886–91. Medline:11950740 http://dx.doi.org/10.1136/bmj.324.7342.886 O’Grady, H. (2005). Women’s relationship with herself: Gender, Foucault, therapy. London: Routledge. http://dx.doi.org/10.4324/9780203341988 Perz, J., & Ussher, J.M. (2006). Women’s experience of premenstrual syndrome: A case of silencing the self. Journal of Reproductive and Infant Psychology, 24(4), 289–303. http://dx.doi.org/10.1080/02646830600973883 Perz, J., & Ussher, J.M. (2009). Connectedness, communication and reciprocity in lesbian relationships: Implications for women’s construction and experience of PMS. In P. Hammock & B.J. Cohler (Eds.), Life course and sexual identity: Narrative perspectives on gay and lesbian identity (pp. 223–50). Oxford: Oxford University Press. http://dx.doi.org/10.1093/acprof:oso/9780195326789.003.0010 Pilgrim, D., & Bentall, R. (1999). The medicalisation of misery: A critical realist analysis of the concept of depression. Journal of Mental Health (Abingdon, England), 8(3), 261–74. http://dx.doi.org/10.1080/09638239917427 Pilver, C.E., Kasl, S., Desai, R., & Levy, B.R. (2011, April). Exposure to American culture is associated with premenstrual dysphoric disorder among

226  Jane M. Ussher and Janette Perz ethnic minority women. Journal of Affective Disorders, 130(1-2), 334–41. Medline:21055829 http://dx.doi.org/10.1016/j.jad.2010.10.013 Potter, J., & Wetherall, M. (1986). Discourse and social psychology. London: Sage. Reissman, C.K. (1993). Narrative analysis: Qualitative research methods (Vol. 30). London: Sage. Russell, J.A. (1991, November). Culture and the categorization of emotions. Psychological Bulletin, 110(3), 426–50. Medline:1758918 http://dx.doi.org/10 .1037/0033-2909.110.3.426 Sabin, R., & Slade, P. (1999). Reconceptualizing pre-menstrual emotional symptoms as phasic differential responsiveness to stressors. Journal of Reproductive and Infant Psychology, 17(4), 381–90. http://dx.doi.org/10.1080/02646839908404603 Shorter, E. (1992). From paralysis to fatigue. New York: Free Press. Sims-Schouten, W., Riley, S.C.E., & Willig, C. (2007). Critical realism in discourse analysis: A presentation of a systematic method of analysis using women’s talk of motherhood, childcare and female employment as an example. Theory & Psychology, 17(1), 101–24. http://dx.doi.org/10.1177/0959354307073153 Slade, P., & Jenner, F.A. (1980). Performance tests in different phases of the menstrual cycle. Journal of Psychosomatic Research, 24(1), 5–8. Medline:7381805 http://dx.doi.org/10.1016/0022-3999(80)90068-9 Steiner, M., & Born, L. (2000, November). Diagnosis and treatment of premenstrual dysphoric disorder: An update. International Clinical Psychopharmacology, 15(15 Suppl 3), S5–S17. Medline:11195269 Stenner, P. (1993). Discoursing jealousy. In E. Burman & I. Parker (Eds.), Discourse analytic research (pp. 114–34). London: Routledge. Ussher, J.M. (1989). The psychology of the female body. London, New York: Routledge. Ussher, J.M. (1999). Premenstrual Syndrome: Reconciling disciplinary divides through the adoption of a material-discursive-intrapsychic approach. In A. Kolk, M. Bekker, & K. Van Vliet (Eds.), Advances in women and health research (pp. 47–64). Amsterdam: Tilberg University Press. Ussher, J.M. (2003a). The ongoing silencing of women in families: An analysis and rethinking of premenstrual syndrome and therapy. Journal of Family Therapy, 25(4), 388–405. http://dx.doi.org/10.1111/1467-6427.00257 Ussher, J.M. (2003b). The role of premenstrual dysphoric disorder in the subjectification of women. Journal of Medical Humanities, 24(1/2), 131–46. http:// dx.doi.org/10.1023/A:1021366001305 Ussher, J.M. (2004). Premenstrual syndrome and self-policing: Ruptures in self-silencing leading to increased self-surveillance and blaming of the body. Social Theory & Health, 2(3), 254–72. http://dx.doi.org/10.1057/palgrave.sth .8700032

Is It Normal or PMS?  227 Ussher, J.M. (2006). Managing the monstrous feminine: Regulating the reproductive body. London: Routledge. http://dx.doi.org/10.4324/9780203328422 Ussher, J.M. (2010). Are we medicalizing women’s misery? A critical review of women’s higher rates of reported depression. Feminism & Psychology, 20(1), 9–35. http://dx.doi.org/10.1177/0959353509350213 Ussher, J.M. (2011). The Madness of women: Myth and experience. London: Routledge. Ussher, J.M., & Perz, J. (2008). Empathy, egalitarianism and emotion work in the relational negotiation of PMS: The experience of women in lesbian relationships. Feminism & Psychology, 18(1), 87–111. http://dx.doi .org/10.1177/0959353507084954 Ussher, J.M., & Perz, J. (2010). Disruption of the silenced-self: The case of premenstrual syndrome. In D.C. Jack & A. Ali (Eds.), The depression epidemic: International perspectives on women’s self-silencing and psychological distress (pp. 435–58). Oxford: Oxford University Press. Ussher, J.M., & Perz, J. (2013). PMS as a gendered illness linked to the construction and relational experience of hetero-femininity. Sex Roles, 68(1–2), 132–50. http://dx.doi.org/10.1007/s11199-011-9977-5 Ussher, J.M., & Perz, J. (2014). Discourse analysis. In P. Rohleder & A. Lyons (Eds.), Qualitative research in clinical and health psychology (pp. 226–37). London: Palgrave MacMillan. Ussher, J.M., Perz, J., & Mooney-Somers, J. (2007). The experience and positioning of affect in the context of intersubjectivity: The case of premenstrual syndrome. Journal of Critical Psychology, 21, 145–65. Ussher, J.M., Rhyder-Obid, M., Perz, J., Rae, M., Wong, W.K.T., & Newman, P. (2012). Purity, privacy and procreation: Constructions and experiences of sexual and reproductive health in Assyrian and Karen women living in Australia. Sexuality & Culture, 16(4), 467–85. http://dx.doi.org/10.1007 /s12119-012-9133-6 Ussher, J.M., & Wilding, J.M. (1992). Interactions between stress and performance during the menstrual cycle in relation to the premenstrual syndrome. Journal of Reproductive and Infant Psychology, 10(2), 83–101. http://dx.doi .org/10.1080/02646839208403941 Wilson, M., & MacCarthy, B. (1994, February). GP consultation as a factor in the low rate of mental health service use by Asians. Psychological Medicine, 24(1), 113–19. Medline:8208876 http://dx.doi.org/10.1017/S003329170002688X Wong, L.P., & Khoo, E.M. (2011, September). Menstrual-related attitudes and symptoms among multi-racial Asian adolescent females. International Journal of Behavioral Medicine, 18(3), 246–53. Medline:20440593 http://dx.doi.org /10.1007/s12529-010-9091-z

228  Jane M. Ussher and Janette Perz Woolf, V. (1957). A room of one’s own. New York: Harcourt, Brace & World. World Health Organization (1981, January). A cross-cultural study of menstruation: Implications for contraceptive development and use. Studies in Family Planning, 12(1), 3–16. Medline:7466889 http://dx.doi.org/10.2307/1965859

8 Depression in Workplaces: Governmentality, Feminist Analysis, and Neoliberalism k at h e r i n e t e g h t s o o n i a n

During the past fifteen years the public profile of depression1 among employed Canadians as a significant issue requiring urgent attention has heightened dramatically. Alongside claims regarding the widespread and growing prevalence of this problem, discussions in the media, scholarly research, and a massive grey literature have emphasized the enormous financial burden it has imposed. Commentators often note the costs to employers of providing sick leave and long-term disability benefits to employees who have been diagnosed with depression. The effects of depression are also depicted as reverberating within – and outward from – specific workplaces in myriad other ways, generating annual costs that add up to billions of dollars. Michael Wilson, a former federal minister of finance, evocatively conveyed these concerns with his claim that “depression is draining productivity from our economy like an unseen leak in a ship at sea” (Global Roundtable, 2006, p. 8).2 Although arguments about the negative economic impact of depression among Canadian workers on both individual employers and the national economy have circulated widely, policy responses to this problem can best be characterized as indirect and relatively limited. The federal government’s approach has reflected, in part, the division of powers within the Canadian federal system, which assigns responsibility for health, including mental health, to the provinces. Rather than taking a direct role in the development and delivery of services, Ottawa has supported efforts to address workers’ mental health through the activities of the Mental Health Commission of Canada (MHCC), which was established by the Harper government in 2007 as an arm’s-length agency with $130 million in funding and a ten-year mandate to serve as “a catalyst for improving the mental health system and changing the attitudes and behaviours of Canadians

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around mental health issues” (MHCC, 2013). Within the province of Brit­ ish Columbia, as at the federal level, government engagement with the problem of depression in the workplace has been reflected primarily in the provision of funding to support relevant initiatives developed by researchers and non-profit agencies, accompanied by calls for employers and employees to ensure that the issue is addressed effectively (British Columbia, 2010, pp. 15, 21–3; Goldner et al., 2002; Teghtsoonian, 2009).3 While government policy responses have been limited, we have nevertheless witnessed a proliferation of texts, tools, websites, and workshops that are intended to address depression in the workplace and have been developed by organizations and individuals outside the formal sphere of the state: business executives, insurance companies, non-profit organizations, researchers, and practitioners. In this chapter I draw on two different conceptual frameworks – an analytic of governmentality and feminist analysis – in order to consider several of these efforts and their relationship to the neoliberal political context within which they have emerged. Following a brief overview of recent initiatives, both federal and within British Columbia, I introduce governmentality as a conceptual framework and employ it to consider the linkages between, on the one hand, the governing practices and subjectivities that these initiatives seek to foster and, on the other, neoliberalism as a governing ethos. Governmentality proves useful in identifying resonances between neoliberalism and practices that are at some distance from the state even when – as is the case with depression among employed Canadians – there is little by way of explicit government policy to address the issue. It does not, however, offer much insight into why efforts to respond to this problem have met with so little success. In considering this particular shortcoming, I argue that feminist analysis provides insights into the relationships between neoliberalism, systemic inequities – such as those constituted around gender, racialized identity, and sexual orientation – and mental distress among employees, that governmentality is not equipped to provide. For the purposes of this chapter I use a simplified understanding of feminist analysis as a research approach that is attentive to the systemic features of economic, social, organizational, and political life that disadvantage women and men who are marginalized along various dimensions (including, for example, gender, racialized identity, disability, sexual orientation, experience of colonization, and class), and to the accounts that members of marginalized groups provide about their circumstances and experiences. In contrast to the governmentality literature, such scholarship generally reflects a strong commitment to informing activism in the service of social justice. In the final section of the

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chapter I consider this difference between the two conceptual frameworks and reflect more generally on the contributions and limitations of each research approach. Depression in the Canadian Workplace: Actors, Discourses, and Strategies Formed and sustained by a group of Canadian business executives, the Toronto-based Global Business and Economic Roundtable on Addiction and Mental Health (hereafter Global Roundtable) rapidly moved to the forefront of efforts to address the problem of depression in the workplace in Canada following its establishment in 1998 (for an account see Wilson & Wilkerson, 2011).4 Supported by Great-West Life Assurance Company, the Great-West Life Centre for Mental Health in the Workplace, and Bell Canada (a major telecommunications firm), the Global Roundtable crafted and promoted the business case for addressing depression in the workplace, facilitated discussion and networking among senior executives, served as a clearinghouse for relevant information, and developed written materials intended to provide guidance for those involved in all levels of organizational management – from chief executive officers to senior management to line supervisors – in responding to depression among employees. The strategies advocated in documents produced by the Global Roundtable reflect the managerial experience and orientations that its members bring to the issue. For example, these documents argue that employers must put in place accounting systems that systematically track costs associated with depression among their employees, must set goals for reducing these costs, and must hold managers and supervisors accountable for achieving these goals. Because its own analysis revealed that the costs of disability benefits are substantial and are driven primarily by the length of time that an employee is off work, the Global Roundtable consistently placed strong emphasis on ensuring an early return to work by employees who are on short-term sick leave or long-term disability benefits because of depression. It also insisted that when mental health issues begin to crop up across an organization, or at particular institutional locations within it, such developments should be understood as a “canary in the mineshaft,” signalling the likely presence of problematic organizational practices needing to be addressed. Depression in the workplace has also received significant attention within the province of British Columbia. Here university-based researchers and practitioners in the fields of clinical psychology and occupational health have been centrally involved in promoting this issue in various ways. For

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example, they have made significant contributions to the BC government’s approach to depression as a public health issue (Goldner et al., 2002), outlined strategies for responding to depression in the workplace (for example, Bilsker, Gilbert, Myette, & Stewart-Patterson, 2004), and developed a web-based resource designed to encourage and support employers in fostering a psychologically healthy and safe workplace (Guarding Minds @ Work, 2013). As was the case with the Global Roundtable’s initiatives, these strategies for prevention and response reflect the professional training and interests of the individuals who developed them. They have focused primarily on the psyches and behaviours of individual employees, directing attention to methods of adjusting individuals to their work environments rather than problematizing features of the workplace that may undermine workers’ well-being. For example, one key initiative undertaken at the request of BC’s Provincial Health Services Authority was the development of Antidepressant Skills at Work (Bilsker, Gilbert, & Samra, 2007), a self-help manual designed to support employees with depression, using the therapeutic techniques of cognitive behavioural therapy (CBT). This manual has been made widely available through the Internet and has been promoted at a number of relevant conferences and workshops, as well as in publications directed at staff in human resources departments. In addition to these efforts by business executives and researchers, over the past decade the BC division of the Canadian Mental Health Association (CMHA-BC), a national non-profit organization, has championed depression in the workplace as an issue. For example, since 2002 CMHABC has organized and hosted an annual conference in Vancouver on this topic. Known as the Bottom Line Conference, a title that nods to the business concerns that the event is intended to address, this annual gathering brings together employers, human resource professionals, practitioners, and union representatives in order to raise awareness about depression in the workplace. Like the Global Roundtable, it has worked to interest employers in taking steps to address the issue by drawing their attention to the ongoing costs that they would incur by not doing so, that is, by showing how it harms their bottom line. CMHA has also supported and promoted Mental Health Works, a training program offering workshops as well as print and digital materials that are designed to educate employers and employees about mental health issues and ways of addressing them effectively within a workplace context. Insurance companies have been strong supporters of the conference, which has been sponsored by both Great-West Life and Pacific Blue Cross since its inception.

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Most recently there has been a shift in how the problem requiring attention is identified, away from “managing depression in the workplace” to a more general focus on the need for employers to ensure a “psychologically healthy and safe workplace.” This development was prompted by several research reports written under the auspices of the MHCC that have noted, among other things, a series of legal decisions that found employers liable for the psychological harm to employees resulting from their failure to provide a psychologically healthy working environment (Lippel, 2011; Shain, 2009, 2010; for a more detailed discussion see Teghtsoonian, 2013). The tenor of these reports is manifest in the title of one of them, Tracking the Perfect Legal Storm: Converging Systems Create Mounting Pressure to Create the Psychologically Safe Workplace, which carries forward the “disaster” motif embedded in earlier characterizations of the problem of depression as an “epidemic,” a “time bomb,” or “an unseen leak in a ship at sea.” In the wake of these reports an extensive consultation process was carried out, culminating in the January 2013 release of a new national standard for fostering psychological health and safety in the workplace, which Canadian employers have been invited to adopt and implement on a voluntary basis (CSA Group–BNQ, 2013). Funding for this work was provided by the federal government and Bell Canada with support from the MHCC (MHCC, 2011). The 2013 Bottom Line Conference, organized around the theme of “Celebrating a New Era in Workplace Mental Health: Putting National Standards into Practice,” was centrally concerned with the discussion and promotion of this new standard. Governmentality, Neoliberalism, and Governing Practices Originally discussed by Foucault in his lectures at the Collège de France (Foucault, 2007, 2008), governmentality has been developed subsequently by researchers working in a number of disciplines into a conceptual framework for analysing the linkages between everyday subjectivities and governing programs that seek to shape them (see, for example, Bröckling, Krasmann, & Lemke, 2011; Miller & Rose, 2008; Rose, 1999; Walters, 2012). While the eclectic nature of empirical research using governmentality as an approach reflects the variability in Foucault’s own account and use of the concept, it generally decentres the state as a privileged site and focuses analytic attention on the specific practices (“technologies”) through which variously situated actors – frequently those who possess some form of recognized expertise – seek to “conduct the conduct” of others. As Peter

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Miller and Nikolas Rose argue, “we need to study the humble and mundane mechanisms by which authorities seek to instantiate government: techniques of notation, computation and calculation; procedures of examination and assessment; the invention of devices such as surveys and presentational forms such as tables; the standardizing of systems for training and the inculcation of habits; the inauguration of professional specialisms and vocabularies; building designs and architectural forms – the list is heterogeneous and in principle unlimited” (Miller & Rose, 2008, p. 63). As this list suggests, and as Bröckling, Krasmann, and Lemke (2011) have noted, “technologies of government ... unfold their effects straight across the usually distinct fields of state, society, and the economy. Studies of governmentality do not assume that everything is a political activity, but political activities are also not reducible to the trinity of politics, policy, and polity”5 (p. 13). This does not mean, however, that the normative commitments, policy orientations, and governing programs of those elected to public office should be ignored. Rather, their relevance and particulars are to be discovered empirically. For example, mapping out the initiatives that have emerged around the problem of depression in workplaces – including the Bottom Line Conference, the various tools for supporting CBT, and the recently released national standard – reveals that these are funded in part by the federal and provincial governments or have been developed in collaboration with agencies within them. Although such linkages can be understood as instances of the practice of “governing at a distance,” to which the literature on governmentality draws our attention (Miller & Rose, 2008, pp. 33–5; and see below), they should not be understood as a matter of state authorities smoothly engineering plans to implement their goals by manipulating unwitting agents located within civil society. While governing ambitions and practices often do originate in formal political structures, they also regularly arise in many other locations. For example, experts of various types argue “that the personal capacities of individuals can be managed in order to achieve socially desirable goals – health, adjustment, profitability, and the like. They have latched on to existing political concerns, suggesting that they have the capacity to ameliorate problems and achieve benefits. They have allied themselves with other powerful social authorities, in particular business people, translating their ‘lay’ problems into expert languages and suggesting that rational knowledges and planned techniques hold the key to success. They have problematized new aspects of existence and, in the very same moment, suggested that they can help overcome the problems that they have discovered” (Miller & Rose, 2008, pp. 42–3; see also Li, 2007, pp. 7–8).

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Such practices are visible in a May 2008 press release in which the CMHA urges Canadian employers “to accept greater responsibility for the mental health of their employees.” In addition to suggesting that employers harm their own bottom line when they fail to promote a healthy work-life balance, the press release argues that “mentally unhealthy workplaces place another burden on an already-stressed healthcare system. Research shows that depression is linked to heart disease, diabetes, and autoimmune disorders” (CMHA-BC, 2008). Here, the CMHA is articulating a formulation of various problems to which it can offer practical solutions through its conferences and training programs, solutions that it argues will be of interest to both business executives and the government of the day. A similar process is unfolding in relation to the new national standard on psychological health and safety in the workplace, that is, a proliferation of training workshops, seminars, conferences, and webinars designed to interest employers and employees in, and educate them about, the standard and how to implement it. Although governmentality as a conceptual framework does de-privilege the state, it nevertheless invites us to explore how governing practices such as those noted above – as well as the subjectivities and choices that they invite – have come to be aligned in various ways with the policy orientations and goals of provincial and federal governments. In the contemporary period in Canada these have been informed significantly by neoliberalism. Neoliberalism has been taken up within governmentality research primarily as a “political rationality” rather than as a coherent set of public policies or as an obfuscatory ideology that works to mask an underlying reality (see, for example, Larner, 2000; Ong, 2007). Thomas Lemke (2001) describes neoliberal forms of government as involving “the strategy of rendering individual subjects ‘responsible’ (and also collectives, such as families, associations, etc.) [which] entails shifting the responsibility for social risks such as illness, unemployment, poverty, etc., and for life in society into the domain for which the individual is responsible and transforming it into a problem of ‘self-care.’ The key feature of the neo-liberal rationality is the congruence it endeavours to achieve between a responsible and moral individual and an economic-rational actor. It aspires to construct prudent subjects whose moral quality is based on the fact that they rationally assess the costs and benefits of a certain act as opposed to other alternative acts” (p. 201). In other words, neoliberalism involves the translation of marketized processes, relationships, and values into arenas previously considered social and/or political, rather than economic. It also involves “responsibilization,”

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that is, the discursive practice of locating responsibility for problems and their solutions in individuals and institutions at some distance from the state. As Bröckling et al. (2011) note, these mechanisms involve “creating lines of force that make certain forms of behavior more probable than others,” rather than “direct command and control” (p. 13), practices that Rose and others have referred to as “governing at a distance.” We can see in this account the policies and priorities conventionally associated with neoliberalism (for example, private rather than public funding and delivery of services; cost efficiency and competition as privileged values), but analytic emphasis is placed on the specific practices through which these are enacted (see Miller & Rose, 2008, pp. 58–83). This somewhat abstract discussion can be made more concrete through examples drawn from the initiatives relating to depression and psychological health and safety in the workplace that were described earlier. To do so, I present three examples of governing practices that are visible in these initiatives: (1) discourses of responsibilization that constitute both employees and employers as “enterprising selves” who assume responsibility for the well-being of their person and/or organization by acting in appropriate, prescribed ways; (2) disability case management as a calculative managerial technology for governing ill employees and their treating medical practitioners; and (3) the research funding program as a mechanism for enrolling both researchers and employers in the project of governing depression in the workplace.

Discourses of Responsibilization In many of the initiatives noted above there has been a strong emphasis on responsibilizing strategies that identify individuals – their attitudes, beliefs, and behaviour – as the appropriate focus of preventive or remedial action intended to reduce the incidence and costs of depression in the workplace. For example, resilience training is proposed as a useful preventive strategy that can be implemented within the workplace; it involves teaching “skills for dealing with work stressors so that employees have greater resilience when faced with changing patterns of workplace stress” (Bilsker et al., 2004, p. 51). The suggestion is that by working on their abilities in areas such as problem solving, time management, goal setting, and mood management, employees will become better equipped to cope with the problematic features of their work environment. Employees are also urged to take up, in their lives away from the workplace, practices that will enhance their resilience within it. Thus, proponents of this view argued that “it is important

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that employees take an active role in maintaining their own health. Routine exercise, good nutrition and weight control, adequate sleep, sufficient leisure time, stress management, and avoidance of illicit drugs and excessive alcohol are all beneficial to both mental and physical health” (Bilsker et al., 2004, p. 52). Alongside resilience training, strong support has also been expressed for cognitive behavioural therapy as a treatment modality for workers struggling with depression. CBT frames depression as a problem of faulty thinking that individuals can learn to correct by replacing negative self-talk with more positive and “realistic” views of the world. Both researchers and the BC provincial government, through its depression strategy (Goldner et al., 2002), have argued for group-based CBT as the best treatment strategy for workers with depression, on the grounds that it is both cost minimizing and evidence based. Strategies such as resilience training and CBT focus on adjusting employees to their working environment rather than on identifying and remediating inequitable, marginalizing, or otherwise harmful features of that environment. They invite us to become agents actively engaged in the project of working on ourselves in order to become more capable, enterprising subjects, fit to make a productive contribution to our workplace and the wider economy. While directed at individuals in their capacity as employees, these practices also constitute a particular type of citizen; they encourage individuals to look to themselves for solutions to their problems, rather than to the public sphere, and implicitly endorse this as a norm to which others ought to be held as well. The individualized subjectivity that is fostered fits nicely with an array of policy commitments associated with neoliberalism. Interestingly, recent initiatives promoting a psychologically healthy and safe workplace direct responsibilizing imperatives towards employers rather than employees. We see this in the language on the Guarding Minds @ Work website, where an extensive set of tools designed to walk employers through the process of assessing and improving their organizational practices is introduced with the following statement: “GM@W is a response to current and emerging legal requirements in Canada for the protection of employee mental health and the promotion of civility and respect at work. Legal standards increasingly require employers to develop comprehensive strategies for ensuring a psychologically safe workplace. Prudent employers need to develop policies and programs that meet these new legal standards” (Guarding Minds @ Work, 2013). Although the language here refers to “meeting” legal standards, it is clear from discussions elsewhere that proponents of the national standard

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view it as initiating a process of continuous improvement that is unlikely ever to culminate in a specific outcome. Presumably, significant legal protection will nevertheless accrue to employers who can demonstrate that they are making an effort – as a good enterprising subject should – even if the scope of improvements actually achieved is less than expansive.

Disability Case Management The second set of practices revolves around disability case management. As noted above, the Global Roundtable strongly advocated identifying and tracking costs associated with depression-related work absences, and identified disability case management as a tool to reduce those costs. In general, disability case management involves ongoing engagement with the employee who is sick and off work by human resources personnel and/or an insurance company case manager, with a view to ensuring as early a return to work as possible. Documents published by the Global Roundtable suggest that this outcome can be achieved by ensuring that practitioners paid for by the employer monitor the employee’s recovery trajectory and guide decisions made by the employee’s physician about treatment. Key goals are to ensure that an early return to work is accepted as a priority by the treating physician and that the employee fully cooperates with this understanding and with the treatment deemed necessary to achieve it. General practitioners are presented as needing considerable assistance in order to facilitate these processes. They are framed as ill equipped to judge an employee’s readiness to return to work, both because they lack an understanding of the workplace and because they inappropriately privilege full symptom remission over occupational functioning in their decision-making. Early integration into a case management process and the development and implementation of standardized treatment protocols are recommended as tools for guiding physicians’ treatment plans in desired directions (Teghtsoonian, 2008). These discursive practices are intended to foster a calculative subjectivity among managers and senior executives so that, however else it might be taken up, the problem of employees’ illness-related absence from work is always approached with a view to minimizing costs. They are also intended to subordinate the medical expertise of the physician to the financial imperatives of the prudently managed business. Both the employee who is unwell and perhaps depression itself are reconstituted through these discussions and the technologies they propose, in ways that are congruent with neoliberal orientations and rationalities. Distressed employees emerge as underperforming investments rather than as ill citizens with entitlements to care supported with public funds.

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Another way of stating this is that rather than being constituted as rightsbearing subjects, persons experiencing depression are constituted instead as employees upon whom employers have claims because they are imposing avoidable financial burdens on the employer rather than contributing as productively as they could. Depression itself is arguably transformed from an illness to be treated into a limitation on productivity to be managed. In all of this we see strong points of contact with key elements of neoliberalism, including the calculative subjectivity that is incited among managers and senior executives through these prescriptions for how they ought to engage with employees who are unwell (Miller, 1994).

The Research Funding Opportunity Since 1998, when the Global Roundtable was established, depression in the workplace has secured a more prominent place in the hierarchy of research priorities in Canada than it had previously occupied.6 This trend has been reflected in, among other developments, the establishment of research funding opportunities by the Canadian Institutes of Health Research (CIHR), the national body through which federal government funding for health research in Canada is made available. During the mid-2000s the CIHR organized a series of workshops and conferences that brought together researchers and interested stakeholders to identify areas in which research was needed. One funding opportunity, launched in 2007, invited applications for a “Catalyst grant: Planning and development in mental health and addiction in the workplace,” intended to “build capacity for research in the area of mental health.” In the background discussion provided in this request we learn that “workplace mental health is strongly aligned with federal government priorities. For example, from the CIHR perspective, the organization is mandated to promote economic development through health research, and to engage private sector organizations in complementary research interests. Research that will improve employee mental health and ultimately productivity, and that will help build strong relationships between researchers and workplace organizations will help to fulfill these mandates” (CIHR, 2007, p. 2). Here, the Global Roundtable’s commitment to addressing depression in the workplace finds a point of contact with the goals of the federal government. And through the funding opportunity, members of the research community and individual workplaces are being enlisted as well. Designed to meet the perceived need for “greater engagement between the business and research communities,” the funding program requires the participation of workplace partners at all stages of the proposed research.

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We are told that through this sort of collaboration “business partners gain valuable knowledge about the factors that impact … on the mental health of their workforce, while researchers gain an understanding of the perspective of the employer that is necessary to developing an appropriate study design, interpreting findings and drawing practical conclusions” (CIHR, 2007, p. 2). The examples of relevant research topics that are provided are closely aligned with the list of employers’ research priorities provided elsewhere by the Global Roundtable, along with its explicit endorsement of the CIHR’s research agenda in this area (Global Roundtable, 2006, pp. 38–9). Thus, through the particulars of funding requirements, researchers and workplaces are being directed towards research agendas oriented to the federal government’s concern with productivity and competitiveness, and the business community’s articulated needs and interests. Limits to Governing, Limits to Governmentality Although significant time and energy have been devoted over the past decade to developing strategies for addressing depression in workplaces, the problem appears to be tenacious. A national poll conducted in 2012 “found that 22 per cent of Canadian workers are experiencing depression, which is a similar percentage to what earlier studies have found in the population at large” (Mayer, 2012). This state of affairs would not come as a surprise to those analysts of governmentality who emphasize that governing ambitions are frequently stymied in their encounter with the empirical world of people and things. As Miller and Rose (2008) argue, “we do not live in a governed world so much as a world traversed by the ‘will to govern,’ fuelled by the constant registration of ‘failure,’ the discrepancy between ambition and outcome, and the constant injunction to do better next time” (p. 71; see also Walters, 2012, pp. 75–6). This is a useful insight, but, beyond positing failure as inevitable, governmentality as a conceptual framework provides us with little assistance in understanding the reasons for it. Li (2007) offers a useful way to think about this “discrepancy between ambition and outcome” through her compelling ethnographic analysis of what happens when the “will to improve” that animates the work of international development agencies is brought to life through specific projects implemented within local communities in Indonesia. She argues that the development projects of interest to her fall short of their aspirations because they are confounded by political-economic processes that they do not acknowledge and therefore cannot address. Instead, the development experts who structure and implement these projects constitute the problems

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that they seek to address as technical rather than political in nature, amenable to resolution via the knowledge and expertise that they themselves can bring to bear (see also Miller & Rose, 2008, discussed above). As Li (2007) suggests, “for the most part, experts tasked with improvement exclude the structure of political-economic relations from their diagnoses and prescriptions. They focus more on the capacities of the poor than on the practices through which one social group impoverishes another” (p. 7). Since “questions about control over the means of production, and the structures of law and force that support systemic inequalities” lie outside the expert discourses informing development projects, they also lie outside the reach of the strategies and initiatives promoted through them (p. 11). Li notes that these limits to the governing practices that she explores have also alerted her as a researcher to “the limits of governmentality as an analytic” (p. 19), which, in her view, arise from the manner in which its conceptual parameters preclude attention to either the production and effects of systemic inequities or the processes through which people mobilize politically to contest these. She argues that, in order to do justice to what she has observed on the ground, she must supplement the insights afforded by governmentality with an analysis of capitalism and class relations that builds on Marx and Gramsci. Doing so allows her to integrate into her discussion the political-economic processes that she views as central to what she has observed, but that are kept out of view both by the governing practices of those seeking to improve the communities where she was doing her research and by the conceptual tools offered by governmentality. Arguably, a similar move is necessary in order to develop some analytic purchase on the failure of contemporary governing programs to remediate the problem of depression in the workplace. In what follows, I mobilize feminist analysis in ways similar to the uses that Li makes of a Marxist political-economy framework. First, I revisit the initiatives discussed above, which, as we have seen, draw significantly on technical expertise (for example, of psychologists, disability case managers, and business executives) with the goal of improving the capacities and practices of individuals in workplace settings. A feminist analysis highlights the failure of these initiatives to problematize political-economic processes or systemic inequities relating to various dimensions of marginalization, such as gender and racialized identity, that could be limiting their effectiveness and/or contributing to mental distress among workers. Second, I draw on examples of feminist scholarship to illustrate how it broadens our field of vision beyond a focus on individual employees and their capacities, to address these features of the broader context. In so

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doing, feminist analysis illuminates linkages between systemic inequities, policy developments associated with neoliberalism, and workers’ experiences that are not adequately captured within the conceptual framework offered by governmentality. Feminist Analysis, Depression, and Neoliberalism Feminist scholars and activists have insisted on the importance of identifying and responding to the needs and interests of diverse groups of women in thinking about mental health issues and in designing appropriate services and support (see, for example, Ad Hoc Working Group on Women, Mental Health, Mental Illness, and Addictions, 2006; Morrow, 2003). However, there appears to be a disconnect between these arguments and the initiatives considered in this chapter, which address in only limited ways the circumstances of women who are marginalized along various social dimensions. For example, the Global Roundtable’s 2006 Business and Economic Plan consistently uses gender-neutral terms (for example, men and women) in referring to workers affected by depression. Similarly, young people and young adults are identified as populations of particular interest, but without any comment on whether young women in the workplace might experience systemic and gendered challenges to their mental and emotional well-being that are distinct from those facing young men. Women workers as a group are visible to some extent in one of the texts published in British Columbia, which invokes the frequently cited statistic that women are twice as likely as men to be diagnosed with depression and argues that, because of this gendered distribution of the diagnosis, it might make sense to focus prevention initiatives on workplaces dominated by women employees (Bilsker et al., 2004, p. 38). However, the particular strategies that are most strongly advocated in this document – resilience training and encouraging employees to adopt a healthy lifestyle – are resolutely focused on individual workers rather than on (gendered or racialized) organizational policies and practices that may contribute to high levels of stress and depression (for a more detailed discussion see Teghtsoonian, 2008). Moreover, such recommendations are presented in this text and elsewhere as if the activities they prescribe are equally available to women and men. The problematic effects of this oversight are reflected in the example that the Global Roundtable (2006) provides of the steps taken by “one young mother and wife as she prepares to return to work full-time,” after having been off work with a diagnosis of bipolar disorder. These include: “get at least 7 hours of sleep … exercise at least 30 minutes per day

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at least five times per week … [and] take time to read daily (this is time for relaxation)” (p. 85). While these activities would undoubtedly deliver important health benefits, being able to undertake them on a consistent basis requires personal and economic resources that are unavailable to many young mothers, whether they are raising children with partners or on their own. Indeed, feminist scholars have identified any number of gendered barriers to leisure time that constrain women’s ability to exercise regularly, relax, or enjoy adequate sleep (Fullagar, 2003). Without acknowledging and addressing these barriers, it is unclear whether resilience-building programs or strategies for promoting healthy lifestyle choices will be able to achieve what they set out to accomplish. In contrast to the individualizing framings that have pervaded many discussions of depression in workplaces and of how best to respond to it, the Global Roundtable consistently emphasized the importance of attending to the ways in which organizational policies and practices may be undermining the health and emotional well-being of employees. Thus, it argued that “in order to go beyond band-aid approaches, the organization must address root causes when developing approaches to meet employee needs. The organization’s strategy must look at more than just programs targeting lifestyle behaviours, as root causes are often found in systemic factors, such as the negative impact of management practices that aggravate or precipitate mental health problems” (Global Roundtable, 2006, p. 138). However, here and elsewhere the discussion fails to acknowledge how organizational policies or managerial practices might play out differently for workers who depart from a male, able-bodied, heterosexual, White norm. Nor do these documents address the possibility that organizational policies and working environments that are experienced as unproblematic by workers who conform to this norm may nevertheless have discriminatory and harmful effects on their colleagues (see, for example, Acker, 1990, 2006; Buddel, 2011; Creese, 2007; Lynk, 2007). Gay and lesbian employees, for example, report significant stress associated with having to work in heteronormative organizational environments and with a wide array of negative experiences attendant on disclosure of their sexual orientation to their coworkers and supervisors (see, for example, Bowring & Brewis, 2009). These gaps in the Global Roundtable’s analysis sit oddly juxtaposed with the growing body of evidence demonstrating the negative impacts that experiences of discrimination and marginalization have on both physical and emotional well-being (see, for example, Buddel, 2011; Das Gupta, 2009; Silverstein, 2013).

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The newly released National Standard (CSA Group–BNQ, 2013) does gesture towards such issues by including a section on “diversity” and references to discrimination in lists of problematic behaviours that undermine psychological health and safety within a workplace. However, the manner in which these and related topics are taken up within the document conveys an individualized and depoliticized framing of issues that might arise from differences among workers. Thus, we learn that “an organization with good civility and respect would be able to state that ... workers from all backgrounds are treated fairly in our workplace” (CSA Group– BNQ, 2013, p. 20). As in the Global Roundtable document, the operation of hetero­sexism, racism, and sexism go unmentioned. Similar silences permeate the discussion of work-life balance. The Global Roundtable (2006) identified work-life balance as an important support for employees’ mental health that employers should foster through their policies since it is one of “ten building blocks of human productive capacity … in a brain-based economy” (p. 25). Discussions in British Columbia also gesture to work-life balance, with one document citing a survey in which a majority of workers “reported significant imbalance in their lives related to increased and competing work and family demands. Those individuals with the greatest degree of role overload and work/family interference reported the highest levels of depressed mood” (Bilsker et al., 2004, p. 28). However, there is no exploration in these discussions of the gendered dimension of the “imbalances” and “interferences” that undermine the emotional well-being of employees, not the least of which is the gendered division of caregiving responsibilities in the domestic sphere that has been so well documented by feminist scholars and activists (Brady, 2008). More recently, the National Standard has included “balance” as one of thirteen “workplace factors affecting psychological health and safety.” Balance is understood to be “present in a work environment where there is acceptance of the need for a sense of harmony between the demands of personal life, family, and work. This factor reflects the fact that everyone has multiple roles: as workers, parents, partners, etc.” (CSA Group–BNQ, 2013, pp. 19, 22). It is discussed in entirely gender-neutral terms. Feminist and other critical scholars have drawn attention to both the deterioration in the terms and conditions of paid employment and the increasing reliance on women’s unpaid work within families and communities that have resulted from the neoliberalizing policy directions that have been pursued by governments in the industrialized West since the mid-1980s (see, for example, Brodie & Bakker, 2007; Creese & Strong-Boag, 2008; Neysmith, Reitsma-Street, Baker Collins, & Porter, 2012). These trends

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have further undermined many women’s already-precarious position in the labour market. For example, Armstrong and her co-authors (2006) have drawn attention to the gendered and racialized impacts of restructuring in the health care sector intended to reduce government costs and privilege efficiency and productivity as key goals. Through privatization and contracting out, workers providing food services, cleaning, and ancillary care – occupational categories in which women (particularly those who are racialized and/or recent immigrants) are over-represented – have been exposed to heightened job insecurity, reduced control over work scheduling and pace, and cuts to wages and benefits, all of which undermine their emotional and physical well-being as well as the quality of care they are able to provide to patients (see also Shalla & Clement, 2007; Stinson, Pollak, & Cohen, 2005; Thomas, 2010; Vosko, 2006). In addition, research on workers in the public and non-profit social services sectors in a number of Canadian provinces has revealed how extensively such services rely on the contributions of staff – generally women – in the form of unpaid overtime, emotional labour, and other “invisible” work to compensate for the shortcomings that result from reduced funding and other reforms (see, for example, Baines, 2004; Kosny & MacEachen, 2010). In light of these findings it is perhaps not surprising to learn that “in the healthcare industry [sic] in British Columbia, mental disorders, of which 73% are depression, represent the fastest growing segment of long-term disability claims … In the Community Social Services sector, claims for depression are the largest segment of the active LTD claims, accounting for 27.5% of all active claims” (Bilsker et al., 2004, p. 25). Women in relatively privileged occupations have also experienced deteriorating working conditions that have resulted in an intensification of the pace and demands of their work, and a concomitant undermining of their physical and emotional well-being. For example, inadequate government funding for post-secondary education has resulted in increased class sizes and decreased staff support at the same time as demands have grown for greater “productivity” and “excellence” in research output (see, for example, Davies & Bansel, 2005; Menzies & Newson, 2007). These developments are reflected in the results of a 2007 survey conducted by the Canadian Association of University Teachers, which found that academic staff in Canada experience high levels of stress flowing from – among other things – excessive workload, having to work outside regular working hours, and work demands interfering with personal life. More than one in five survey respondents reported taking medication for stress-related illness during the twelve months prior to the survey (Catano et al., 2007,

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p. 23). Acker and Armenti (2004) encountered these issues in their research on women academics at a number of Canadian universities during the mid-1990s. In their 2004 article – aptly titled “Sleepless in Academia” – they noted that many of their research participants reported significant health problems that resulted from heavy workloads, difficulties juggling work demands with the time and energy needed to raise children, and the experience of ever-increasing expectations regarding research productivity coupled with diminishing supports. Two decades later, these issues have yet to be adequately addressed. Moreover, Aboriginal and racialized academic staff, now present in the academic workplace in greater numbers, face additional challenges in managing this unpromising configuration of demands and resources because they are also called to contribute to their communities, both within and outside the academy, and often must direct their time and energy to remediating institutional and individual racism in their classrooms and academic units (see, for example, Henry & Tator, 2009). As the discussion above suggests, such difficulties do not arise in a political vacuum, and feminist scholarship demonstrates the importance of placing into a broader context problems that may otherwise appear to be organizational or individual in nature. For example, in their analysis of the impact of health care restructuring in British Columbia on nursing practice and the quality of hospital care, Rankin and Campbell (2007) trace the connections between contemporary developments in public policy, changes to organizational policies and practices within the health care system, and the working lives of hospital nurses. They observe that some of the difficulties reported by the nurses whom they interviewed were experienced and understood as reflecting a “toxic working culture” and problematic interpersonal relationships. However, Rankin and Campbell argue, such difficulties can be traced back to managerial strategies that divert attention away from the concrete problems with patient care about which nurses have concerns, and these strategies have themselves been constituted by government policy decisions that enact neoliberal commitments. Other researchers have noted the damaging health consequences of structural and interpersonal violence experienced by nurses in various health care settings, arguing that conventional understandings of such experiences in individualized terms ignore the many ways in which they are produced and shaped by neoliberalizing policy shifts, gendered assumptions about nurses and nursing work, and racist beliefs and organizational practices (Choiniere et al., 2010, 2014; see also Das Gupta, 2009). In addition to political and economic trends, such as those noted above, that have a direct impact on working conditions, feminist research has

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demonstrated that the well-being of women workers is also shaped by the extent to which provincial and federal government policies ensure – among other things – adequate and fair wages; affordable housing; reliable, accessible, high-quality child care; and support for the care of elderly parents (see, for example, Cohen & Pulkingham, 2009). Absent such policies, women and their families are more likely to live in poverty and experience high levels of stress, both of which are associated with experiences of depression. Moreover, without adequate public policies in these and related areas, significant time and energy is required on the part of unpaid family members to provide various aspects of health and personal care to those who are ill and injured. In addition, the gendered distribution of caregiving responsibilities means that these family members are generally women, many of whom are also in paid employment. Attempting to bolster our mental well-being in the context of our workplaces, while ignoring the ways in which it is undermined through the effects of various government policies, would appear to be a Sisyphean task. Conclusion The discussion in this chapter suggests that governmentality and feminist analysis each illuminate different aspects of the problem of depression among employed Canadians. The conceptual framework offered by governmentality draws our attention to the political dimensions of what might otherwise appear to be merely technical or scientific aspects of initiatives intended to address this issue: the techniques we are urged to adopt in managing our emotional and cognitive lives; the practices of disability case managers, employers, and insurance companies; and the guidelines of research funding agencies. Governmentality provides a useful set of analytic tools for unearthing the linkages between such efforts to “conduct the conduct” of individuals and wider political rationalities such as neoliberalism, even in circumstances where relevant policy initiatives adopted by the state are rather thin on the ground. However, as Li has suggested, there are significant limits both to what governing practices such as those explored in this chapter are able to achieve, and to what the conceptual tools provided by governmentality are able to address. Building on Li’s analysis, I have argued that systemic inequities and discriminatory practices organized around gender, racialized identity, and sexual orientation go undiagnosed by the expertise-driven governing practices that target depression (or poor mental health generally) in the workplace and are central to current efforts to address this issue

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in Canada. Instead, these initiatives focus on enhancing the coping strategies of individual workers. When they do address organizational practices, they fail to acknowledge or address their differential impact on employees whose lives are marked by disparate degrees and forms of marginalization. And governmentality as a conceptual framework shares with these governing practices a disinterest in, and an inability to address, systemic inequities and the processes through which they are constituted. Feminist analysis, by contrast, allows us to see how the gendered, racialized, and heteronormative features and effects of workplace environments and practices, of caregiving and community responsibilities, and of neoliberalizing policies generate systemic inequities that can compromise in significant ways the physical and emotional well-being of Canadian workers. Such scholarship also reflects a strong commitment to developing insights that can inform activism oriented to remediating the inequitable features of workplaces and government policies. Multiple lines of potential action for addressing the problem of depression among employed Canadians are identified in the scholarly work discussed above; they include acknowledging and addressing discriminatory and marginalizing practices within workplaces and communities, as well as the development of public policies that, among other things, provide visibility and material support for caregiving work and adequate compensation for secure employment. Consistent with its lack of attention to systemic inequities, there is little in the governmentality literature that resonates with the social justice commitments that inform research conducted through a feminist lens. Those deploying an analytic of governmentality are interested in criticism as an analytic practice of unsettling the taken-for-grantedness of how things are, but shy away from prescribing courses of action or taking a normative stance on the topic of research. This position reflects, in part, an understanding of liberatory impulses as themselves implicated in the constitution of governing practices (see, for example, Rose, O’Malley, & Valverde, 2006). Li (2007) explains her own refusal to offer prescriptions for change by arguing that the work of the programmer (one who designs and pursues governing strategies) and the work of the critic “are properly distinct. A central feature of programming is the requirement to frame problems in terms amenable to technical solutions ... Under pressure to program better, they are not in a position to make programming itself an object of analysis. A critic can take a broader view” (p. 2). Of what value, then, is an analytic of governmentality to scholars and activists who are keenly interested in social justice? While space does not permit an extended consideration of this question, I would like to close

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by advancing two suggestions regarding contributions that this conceptual framework can make. The first is that its emphasis on governing programs as tenuous and incomplete, rather than as permanent and secure, provides an opening to move away from a conceptualization of neoliberalism as monolithic and all-encompassing and towards one that is more nuanced, more attuned to the uneven and tenuous nature of neoliberal accomplishments. Such a conceptualization may prove to be less politically disempowering and immobilizing than are more totalizing depictions of neoliberalism, including those that often haunt feminist accounts. The second is that the cautionary note sounded within the governmentality literature regarding the governing impetus present within liberatory or progressive political projects is worth further consideration by feminists and others interested in pursuing social justice goals. It suggests that, whatever the motivations that underlie them, efforts to conduct the conduct of others may entail the privileging of expertise and the displacement of the political by the technical. An attentiveness to this possibility could contribute usefully to practices of critical reflexivity regarding the potential for such effects within social justice–oriented policies and programs, both in relation to the problem of depression in Canadian workplaces and more broadly.

NOTES 1 The initiatives discussed in this chapter are premised on an assumption that depression is a form of mental illness. This characterization has been vigorously challenged in a variety of ways by critical scholars, practitioners, and activists. While agreeing that the conventional understanding of depression as illness is highly contestable on various grounds, I am interested in pursuing other lines of critical analysis in this chapter and so do not address this problematic assumption in my discussion. 2 This phenomenon is not confined to Canada. See, for example, the various publications produced by the Organisation for Economic Co-operation and Development, available at http://www.oecd.org/employment/mental-healthand-work.htm. 3 Provincial government policies do engage directly with workers whose mental health issues originate within the workplace through worker’s compensation legislation, but until recently such policies have defined very narrowly the type and etiology of “mental injuries” that are covered and have explicitly excluded chronic job stress and mental health challenges arising therefrom (Lippel, 2011).

250  Katherine Teghtsoonian 4 Although the Global Roundtable decided to suspend its work in 2010, its analysis remains a cornerstone of activity in this area. 5 This feature of governmentality flows from and is congruent with Foucault’s “capillary” conceptualization of power. Commentators on this aspect of Foucault’s work regularly fail to notice that feminist activists were also articulating such a view beginning in the 1960s, via their argument that the personal is political. 6 This is congruent with Foucault’s argument that the human sciences constitute, rather than discover, their objects of study. A future line of inquiry could usefully track the production of “depression in the workplace” over the past fifteen years through the myriad studies conducted by researchers in diverse locations (the university, government, the business community, the non-profit sector). The scope of “the problem” and the array of research have grown both exponentially and together. REFERENCES Acker, J. (1990). Hierarchies, jobs, bodies: A theory of gendered organizations. Gender & Society, 4(2), 139–58. http://dx.doi.org/10.1177/089124390004002002 Acker, J. (2006). Inequality regimes: Gender, class, and race in organizations. Gender & Society, 20(4), 441–64. http://dx.doi.org/10.1177/0891243206289499 Acker, S., & Armenti, C. (2004). Sleepless in academia. Gender and Education, 16(1), 3–24. http://dx.doi.org/10.1080/0954025032000170309 Ad Hoc Working Group on Women, Mental Health, Mental Illness, and Addictions. (2006). Women, mental health and mental illness and addiction in Canada: An overview. Retrieved from www.cwhn.ca/sites/default/files/PDF /womenMentalHealth.pdf Armstrong, P., Armstrong, H., & Scott-Dixon, K. (2006). Critical to care: The invisible women in health services. Toronto: University of Toronto Press. Baines, D. (2004). Caring for nothing: Work organization and unwaged labour in social services. Work, Employment and Society, 18(2), 267–95. http://dx.doi .org/10.1177/09500172004042770 Bilsker, D., Gilbert, M., Myette, T.L., & Stewart-Patterson, C. (2004). Depression and work function: Bridging the gap between mental health care and the workplace. Vancouver: Mental Health Community Consultation and Evaluation Unit. Retrieved from www.sfu.ca/carmha/publications/depression-and -work-function.html Bilsker, D., Gilbert, M., & Samra, J. (2007). Antidepressant skills at work: Dealing with mood problems in the workplace. Vancouver: CARMHA.

Depression in Workplaces  251 Bowring, M.A., & Brewis, J. (2009). Truth and consequences: Managing lesbian and gay identity in the Canadian workplace. Equal Opportunities International, 28(5), 361–77. http://dx.doi.org/10.1108/02610150910964231 Brady, M. (2008). Absences and silences in the production of work-life balance policies in Canada. Studies in Political Economy, 81(1), 99–127. http://dx.doi .org/10.1080/19187033.2008.11675074 British Columbia Ministry of Health Services and Ministry of Children and Family Development. (2010). Healthy minds, healthy people: A ten-year plan to address mental health and substance use in British Columbia. Retrieved from http://www.health.gov.bc.ca/library/publications/year/2010/healthy_minds _healthy_people.pdf Bröckling, U., Krasmann, S., & Lemke, T. (2011). From Foucault’s lectures at the Collège de France to studies of governmentality: An introduction. In U. Bröckling, S. Krasmann, & T. Lemke (Eds.), Governmentality: Current issues and future challenges (pp. 1–33). New York: Routledge. Brodie, J., & Bakker, I. (2007). Canada’s social policy regime and women: An assessment of the last decade. Ottawa: Status of Women Canada. Buddel, N. (2011). Queering the workplace. Journal of Gay & Lesbian Social Services, 23(1), 131–46. http://dx.doi.org/10.1080/10538720.2010.530176 Canadian Institutes of Health Research (CIHR). (2007). Catalyst grant: Planning and development in mental health and addiction in the workplace; Funding opportunity details. Retrieved from https://www.researchnet-recherchenet.ca/rnr16 /vwOpprtntyDtls.do?prog=395&view=search&terms=catalyst+grant&incArc= true&launchYear=2007&type=EXACT&resultCount=25 Canadian Mental Health Association, British Columbia (CMHA-BC). (2008). Mentally unhealthy workplaces take their toll. Retrieved from https://www .sudbury.com/lifestyle/mentally-unhealthy-workplaces-take-their-toll-219883 Canadian Standards Association and Bureau de normalisation du Québec (CSA Group–BNQ). (2013). Psychological health and safety in the workplace: Prevention, promotion, and guidance to staged implementation. National Standard of Canada no. CAN/CSA-Z1003–13/BNZ 9700–803/2013. Technical Committee on Psychological Health and Safety in the Workplace. Ottawa: Author. Catano, V., Francis, L., Haines, T., Kirpalani, H. Shannon, H., Stringer, B., & Lozanski, L. (2007). Occupational stress among Canadian university academic staff (Unpublished manuscript). Choiniere, J.A., MacDonnell, J.A., Campbell, A.L., & Smele, S. (2014, March). Conceptualizing structural violence in the context of mental health nursing. Nursing Inquiry, 21(1), 39–50. Medline:23517526 http://dx.doi.org/10.1111 /nin.12028

252  Katherine Teghtsoonian Choiniere, J.A., MacDonnell, J., & Shamonda, H. (2010, November). Walking the talk: Insights into dynamics of race and gender for nurses. Policy, Politics & Nursing Practice, 11(4), 317–25. Medline:21531967 http://dx.doi.org/10.1177 /1527154410396222 Cohen, M.G., & Pulkingham, J. (2009). Public policy for women: The state, income security, and labour market issues. Toronto: University of Toronto Press. Creese, G. (2007). Racializing work / reproducing white privilege. In V. Shalla & W. Clement (Eds.), Work in tumultuous times: Critical perspectives (pp. 192–226). Montreal: McGill-Queen’s University Press. Creese, G., & Strong-Boag, V. (2008). Still waiting for justice: Provincial policies and gender inequality in B.C., 2001–2008. Retrieved from www.bcfed.ca /fils/1670-)*bre-Still%20Waiting%s0for%20Justice_0.pdf Das Gupta, T. (2009). Real nurses and others: Racism in nursing. Halifax, NS: Fernwood Publishing. Davies, B., & Bansel, P. (2005). The time of their lives? Academic workers in neoliberal time(s). Health Sociology Review, 14(1), 47–58. http://dx.doi .org/10.5172/hesr.14.1.47 Foucault, M. (2007). Security, territory, population: Lectures at the Collège de France, 1977–1978. New York: Palgrave Macmillan. Foucault, M. (2008). The birth of biopolitics: Lectures at the Collège de France, 1978–1979. New York: Palgrave Macmillan. Fullagar, S. (2003). Governing women’s active leisure: The gendered effects of calculative rationalities within Australian health policy. Critical Public Health, 13(1), 47–60. http://dx.doi.org/10.1080/0958159031000100206 Global Business and Economic Roundtable on Addiction and Mental Health (Global Roundtable). (2006). 2006 Business and economic plan for mental health and productivity. Retrieved from http://www.mentalhealthroundtable.ca /20060328/2006BusinessPlan.pdf Goldner, E.M., Bilsker, D., Waraich, P., Paterson, R., Jones, W., & Lanting, S. (2002). British Columbia’s provincial depression strategy: Phase 1 report. Victoria, BC: Ministry of Health Services. Retrieved from http://www.health services.gov.bc.ca/mhd/pdf/depressionstrategy.pdf Guarding Minds @ Work. (2013, February 29). Homepage. Retrieved from http:// www.guardingmindsatwork.ca/info/index Henry, F., & Tator, C. (2009). Racism in the Canadian university: Demanding social justice, inclusion, and equity. Toronto: University of Toronto Press. Kosny, A., & MacEachen, E. (2010). Gendered, invisible work in non-profit social service organizations: Implications for worker health and safety. Gender, Work and Organization, 17(4), 359–80.

Depression in Workplaces  253 Larner, W. (2000). Neoliberalism: Policy, ideology, governmentality. Studies in Political Economy, 63(1), 5–25. http://dx.doi.org/10.1080/19187033.2000.11675231 Lemke, T. (2001). The birth of bio-politics: Michel Foucault’s lecture at the Collège de France on neo-liberal governmentality. Economy and Society, 30(2), 190–207. http://dx.doi.org/10.1080/03085140120042271 Li, T.M. (2007). The will to improve: Governmentality, development, and the practice of politics. Durham, NC: Duke University Press. http://dx.doi.org/10.1215 /9780822389781 Lippel, K. (2011). Law, public policy and mental health in the workplace. Health­ care Papers, 11(Sp), 20–37. Medline:24917254 http://dx.doi.org/10.12927 /hcpap.2011.22408 Lynk, M.S. (2007). Disability and work: The transformation of the legal status of employees with disabilities in Canada. http://dx.doi.org/10.2139/ssrn.1068403 Mayer, A. (2012, 11 October). Employers alone can’t fix workplace depression. Retrieved from http://www.cbc.ca/news/canada/employers-alone-can-t-fix -workplace-depression-1.1210294 Menzies, H., & Newson, J. (2007). No time to think: Academics’ life in the globally wired university. Time & Society, 16(1), 83–98. http://dx.doi.org/10.1177 /0961463X07074103 Mental Health Commission of Canada (MHCC). (2011, 23 June). National Stan­dard of Canada for psychological health and safety in the workplace – Backgrounder. Retrieved from http://www.mentalhealthcommission.ca/English/media/3045 Mental Health Commission of Canada (MHCC). (2013, 1 March). Vision and mission of the MHCC. Retrieved from http://www.mentalhealthcommission.ca Miller, P. (1994). Accounting and objectivity: The invention of calculating selves and calculable spaces. In A. Megill (Ed.), Rethinking objectivity (pp. 239–64). Durham, NC: Duke University Press. Miller, P., & Rose, N. (2008). Governing the present: Administering economic, social and political life. Cambridge: Polity Press. Morrow, M. (2003). Mainstreaming women’s mental health: Building a Canadian strategy. Vancouver: BC Centre of Excellence for Women’s Health. Neysmith, S., Reitsma-Street, M., Baker Collins, S., & Porter, E. (2012). Beyond caring labour to provisioning work. Toronto: University of Toronto Press. Ong, A. (2007). Neoliberalism as a mobile technology. Transactions of the Institute of British Geographers, 32(1), 3–8. http://dx.doi.org/10.1111/j.1475-5661.2007.00234.x Rankin, J.M., & Campbell, M.L. (2007). Managing to nurse: Inside Canada’s health care reform. Toronto: University of Toronto Press. Rose, N. (1999). Powers of freedom: Reframing political thought. Cambridge: Cambridge University Press. http://dx.doi.org/10.1017/CBO9780511488856

254  Katherine Teghtsoonian Rose, N., O’Malley, P., & Valverde, M. (2006). Governmentality. Annual Review of Law and Social Science, 2(1), 83–104. http://dx.doi.org/10.1146/annurev .lawsocsci.2.081805.105900 Shain, M. (2009). Stress, mental injury and the law in Canada: A discussion paper for the Mental Health Commission of Canada. Retrieved from http://www .mentalhealthcommission.ca/English/media/3043 Shain, M. (2010). Tracking the perfect legal storm: Converging systems create mounting pressure to create the psychologically safe workplace. Retrieved from http://www.mentalhealthcommission.ca/English/media/3051 Shalla, V. & Clement, W. (Eds.). (2007). Work in tumultuous times: Critical perspectives. Montreal: McGill-Queen’s University Press. Silverstein, J. (2013, 12 March). How racism is bad for our bodies. The Atlantic. Retrieved from http://www.theatlantic.com/health/archive/2013/03/how -racism-is-bad-for-our-bodies/273911/ Stinson, J., Pollak, N., & Cohen, M. (2005). The pains of privatization: How contracting out hurts health support workers, their families, and health care. Vancouver: Canadian Centre for Policy Alternatives, BC Office. Retrieved from http://www .cwhn.ca/en/node/26361 Teghtsoonian, K. (2008). Managing workplace depression: Contesting the contours of emerging policy in the workplace. In P. Moss & K. Teghtsoonian (Eds.), Contesting illness: Processes and practices (pp. 69–89). Toronto: University of Toronto Press. Teghtsoonian, K. (2009, July). Depression and mental health in neoliberal times: A critical analysis of policy and discourse. Social Science & Medicine, 69(1), 28–35. Medline:19427730 http://dx.doi.org/10.1016/j.socscimed.2009.03.037 Teghtsoonian, K. (2013). Mental health, workplaces, policy: Discursive practices and governing technologies in Canada. Unpublished paper presented at the International Conference on Public Policy, Grenoble, France. Thomas, M. (2010). Neoliberalism, racialization, and the regulation of employment standards. In S. Braedley & M. Luxton (Eds.), Neoliberalism and everyday life (pp. 22–36). Montreal: McGill-Queen’s University Press. Vosko, L.H. (Ed.). (2006). Precarious employment: Understanding labour market insecurity in Canada. Montreal: McGill-Queen’s University Press. Walters, W. (2012). Governmentality: Critical encounters. New York: Routledge. Wilson, M., & Wilkerson, B. (2011, 8 December). Brain health + brain skills = brain capital. Global Business and Economic Roundtable on Addiction and Mental Health. Retrieved from http://www.mentalhealthroundtable.ca/report /MHR_FinalReport.pdf

9 Gender Non-conformity or Psychiatric Non-compliance? How Organized Non-compliance Can Offer a Future without Psychiatry j e m m a to s h

Gender non-conformity has been pathologized by psychiatry for well over a century, and critiques of this pathologization are numerous (Ansara & Hegarty, 2012; Langer & Martin, 2004; Lev, 2006; Tosh, 2015, 2016; Winters, 2009a). I add to this body of analysis by drawing on feminist, transgender, and critical psychology perspectives to critique current psychiatric diagnostic approaches to gender. I also foreground the role of power in psychiatry’s defining of gender normality by interweaving post-­structuralist and intersectionality theory (Crenshaw, 1991; Foucault, 1977), including a discursive analysis of the criteria for “gender dysphoria”1 (Parker, 2014). In conducting this analysis, I illustrate how the diagnosis of gender dysphoria can represent a form of psychiatric non-compliance, which is considered problematic by psychiatry but offers a useful way of resisting psychiatric power when the non-compliance is organized. There has been a wide range of “organized noncompliance” (Emke, 1992) directed at psychiatry, and at the diagnosis of gender dysphoria in particular. This has included a variety of collaborative activist strategies that address multiple intersecting issues, such as sexism, cisgenderism, and sanism. As illustrated by the organized non-compliance of feminism and psychiatric survivor organizations, a key aim of this resistance is the transformation of oppressive medical and psychiatric systems. This range of perspectives provides opportunities to reflect on possible alternatives to psychiatric treatment for gender non-conforming individuals, as well as on the tension between campaigns that focus on equal rights and those that focus on social justice. Critical Perspectives on Gender Dysphoria In 1980 the American Psychiatric Association (APA) introduced gender identity disorder2 into the third edition of the Diagnostic and Statistical

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Manual of Mental Disorders (DSM). In 2013 the fifth edition of the DSM renamed the diagnosis gender dysphoria. The diagnosis is applied to those who experience incongruence between their gender identity and their body or those who have “a strong desire to be of the other gender” (APA, 2013, p.  452). When the diagnosis is applied to children, it includes a broader definition, such as: “In boys (assigned gender), a strong preference for cross-dressing or simulating female attire; or in girls (assigned gender), a strong preference for wearing only typical masculine clothing and a strong resistance to the wearing of typical feminine clothing” (APA, 2013, p. 452).3 The diagnosis is most often applied to transgender and gender non-­conforming adults, adolescents, and children. It is also increasingly applied to intersex individuals (Tosh, 2013). Transgender is a non-medical term that is often used interchangeably with several others (such as gender non-conformity, gender creativity). For the purposes of this chapter I use the word to refer to a diverse group of individuals whose gender identity does not match either their body or Western society’s narrow definition of gender “norms.”4 Some choose to undergo genderconfirmation surgery and/or hormonal interventions, while others do not. Intersex is a term used to describe individuals who are born with genitalia that are considered ambiguous by medical professionals; the genitalia do not correlate with the binary of “male” and “female.” It is important to note that the appropriation of intersex identities within trans contexts can result in the erasure of intersex issues (Organization Intersex International [OII] Australia, 2011). While there are areas of commonality for both groups, there are also distinct differences, such as transgender communities campaigning for access to body-modification surgery, which contrasts with intersex activism that seeks to protect children from non-consensual genital surgery (Chase, 2006). As OII Australia (2011) concludes, “intersex and trans people should be strong allies, but should not speak for each other” (para. 10). Likewise, the use of official third-gender categories (such as “x”) can remove the autonomy of intersex individuals to self-define (OII Australia, 2011). A law introduced in Germany in 2013 specifies that the label of intersex is mandatory for those who cannot be categorized as either male or female; thus, there is no choice for the parents or individual, despite many celebrating the third gender option. Many laws apply only to men and women (such as marriage laws), and therefore a third gender legal category can grant to intersex individuals fewer rights than to other genders, including placing children at an increased risk of non-consensual surgery (Viloria, 2013). These additional consequences illustrate that social changes can be beneficial to some communities but result in further oppression for others. This is one example

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of the tensions between campaigns for equal rights and those for social justice (Spade, 2011), as the (legal) redefining of gender can change the system of discrimination and oppression in place for trans people; however, this law change also has the potential to reduce the rights of intersex people. Consequently, interventions and research regarding gender non-conformity require researchers to use an intersectional lens. The use of the gender dysphoria diagnosis within the professions of psychology and psychiatry enables therapeutic intervention, which for some therapists includes aims of preventing transgender identities and discouraging gender non-conformity, what Winters (2009a) terms “gender reparative approaches.” Others within the profession help individuals with the distress associated with gender dysphoria, as well as the social ostracism that can result from living within a culture of cisgenderism, a context described by Kennedy (2013) as “a systemic erasure and problematizing of trans people, an essentializing of gender as binary, biologically determined, fixed at birth, immutable, natural and externally imposed on the individual” (p. 4). Psychiatry has a long history of framing gender non-conformity as pathological, which includes a vast array of diagnostic categories that are a result of numerous changes stemming from disagreement and uncertainty­ within the profession (Tosh, 2014, 2016). Controversy and criticism have­ followed the overarching concept of gender dysphoria through its many changes (for example, Bryant, 2006, 2008; Hegarty, 2009; Hird, 2003; Isay, 1997; Kennedy, 2013; Langer & Martin, 2004; Lev, 2006; Tosh, 2015; Winters, 2011), yet fundamental issues remain, including that (1) it assumes a “natural,” “normal,” and “healthy” gender binary based on stereotypical notions of gender; (2) it pathologizes expressions of gender that do not fit into this narrow framework; (3) it positions gender diversity as pathological, which creates barriers for those who are experiencing genderrelated distress and seeking support; (4) it is culturally specific, in that these ideas of gender norms are deeply embedded in Western ideals of masculinity and femininity; (5) it is victim blaming when it frames those who experience victimization as inciting abusive actions from others through their gender non-conforming behaviours or appearance; and (6) it individualizes the social problems of cisgenderism and transphobia, rather than promoting gender diversity through social change.

Assuming a “Natural,”“Normal,” and “Healthy” Gender Binary In her infamous Feminine Mystique (1963) Friedan highlighted the unhappiness experienced by White middle-class women when they were trying

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to live within the boundaries of a 1950s homemaker role. More recently, Ussher (2010) has highlighted how conformity to restrictive gender roles can lead to feeling depressed, which can subsequently be individualized and pathologized through the diagnosis of major depressive disorder (APA, 2013). In addition, many have observed the issues related to expectations of needing to be a “real man,” including victimization, abuse, and physical violence, when “failing” to meet the social requirements of “real” masculinity (for example, Gregorio-Godeo, 2006; Kimmel & Mahler, 2003; Messner, 1992). Therefore, the assumption that conformity to hegemonic masculinity or femininity is not only “normal” but also healthy neglects the wealth of criticism regarding these concepts, as well as the distress and problems that one can experience in expressing gender within these rigid confines (Ussher, 2010).

Pathologizing Gender Diversity Framing gender non-conformity as an aspect of psychiatric abnormality pathologizes those who do not conform to the rigid categories of feminine and masculine and to Western gender “norms.” This pathologization continues despite the change from a diagnosis of gender identity disorder to one of gender dysphoria in 2013. Dysphoria means “distress”; as Fisk (1974) described it, “a dictionary definition of dysphoria includes dissatisfaction, anxiety, restlessness and discomfort” (p.  387). Therefore, this new diagnostic label emphasizes gender-related distress (Starcevic, 2007; Winters, 2011). However, it is only the name that reflects this change, as the DSM-5 criteria still retain their focus on gender non-conforming behaviours in childhood as follows: “A strong preference for the toys, games, or activities stereotypically used or engaged in by the other gender … In boys (assigned gender), a strong rejection of typically masculine toys, games, and activities and a strong avoidance of rough-and-tumble play; or in girls (assigned gender), a strong rejection of typically feminine toys, games, and activities” (APA, 2013, p. 452). Pathologizing gender non-­conformity, then, continues to be the most prominent way of describing trans individuals within psychology and psychiatry (Ansara & Hegarty, 2012).

Creating Barriers for Those Seeking Support The diagnostic criteria of the DSM have been frequently criticized for being too broad and for misdiagnosing individuals. However, diagnostic criteria can simultaneously exclude those who seek medical support, by creating

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a variety of barriers to body-modification procedures (Garner, 2011; Lev, 2006). This is the case despite the ease with which those who choose similar procedures for gender-conforming purposes can access them, such as the reduction of “man-boobs” or vaginal-tightening procedures (Braun, 2005; Tiefer, 2008). Garner (2014) addresses this issue through a comparative analysis of masculine-identified men and trans men seeking “breast”/ breast reduction surgery. Garner (2014) argues that assuming particular bodies are “natural” (such as those categorized as male or female at birth) positions change from this state as “disordered.” Subsequently, individuals who want surgical procedures that conform to medical perspectives of “normal” gender face fewer obstacles than those who challenge them, who are then labelled as “mentally ill.”

Being Culturally Specific Framing gender as a binary fails to consider the range of cultures that exist with more than two genders. These alternatives to a gender binary have frequently been undermined as “unscientific,” “delusions” (for example, Baklinski, 2013), or “not a feasible option” in “industrialized society” (Ahmed, Morrison, & Hughes, 2004, p. 849). However, Australia recently announced a third gender option of “x” (indicating indeterminate, intersex, or unspecified) on official documents, including passports (Nelson, 2013).5 In India the hijra also represents a gender expression that is “neither male nor female, man nor woman” (Nanda, 1993, p. 373), and two-spirited individuals exist within a more nuanced understanding of gender in Aboriginal communities. The latter gender expression was harshly punished during European colonization (Tafoya, 2003). As Cameron (2005) describes, “prior to European contact, many (but not all) Aboriginal groups had two-spirit members who were integral parts of the community, occupying positions of honour and communal value. Sabine Lang states that two-spirit people were ‘seen as being neither men nor women, but as belonging to genders of their own within cultural systems of multiple genders’” (pp. 123–4). It is important to note, however, that this term is also highly contested:6 “As Snow Owl reports, ‘In the Aboriginal community, Two-Spirit is debatable. There is still a lot of dialogue going on. Some people refuse Two-Spirit because it is an English term, [and] to the other extreme, people embrace the term because of homophobia within Canadian society. Because of ostracization from our families and our communities” (Greensmith & Giwa, 2013, p. 136). The introduction of a rigid two-gender system and the devaluing of femininity and gender non-conformity were part of the colonial and patriarchal

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process.7 Thus, the examination of these issues includes important intersections between gender and culture.

Blaming the Victim Equally problematic is the framing of psychiatric intervention and treatment as prevention for “social ostracism” (Zucker, Wood, Singh, & Bradley, 2012). This frames the individual who expresses gender non-conformity as inciting victimization, much like the victim-blaming discourses regarding sexual violence and how women dress or behave as “asking for it” (Lea, 2007). As an interviewee in Burke’s (2011) Gender Shock explains, “[gender identity disorder] doesn’t really separate stress a person feels about their gender from stress based on social problems people experience because they are gender variant. It’s all kind of lumped together, so gender variant people end up being responsible for the way other people treat them” (p. 193). Critics argue that interventions should target those who victimize, not the victimized (Langer & Martin, 2004; Tosh, 2013). Menvielle, Tuerk, & Jellinek (2002) describe a therapeutic approach that is an example of such interventions, where therapists facilitate a parenting support group to help families adapt to a gender non-conforming child, rather than encouraging the child to conform to a rigid gender system. This method is more in line with the recommendations of the World Professional Association for Transgender Health (WPATH), which state that changing a child’s gender identity is no longer considered ethical practice (WPATH, 2011).

Individualizing Social Problems The diagnosis of gender dysphoria, then, detracts attention from the role of victimization and social inequalities; that is, feeling distressed by the actions of others forms not only part of the criteria but also the justification for psychiatric intervention. This turns our focus towards individuals who are sitting separately in private therapeutic rooms, describing experiences of victimization, rather than towards creating awareness of systemic discrimination. Cisgenderism and transphobia are two ways that gender non-conforming people can experience social ostracism, discrimination, and victimization. Cisgenderism (Ansara & Hegarty, 2012) is the discrimination and exclusion that can result from making assumptions that there are two gender expressions: it is “a prejudicial ideology, rather than an individual attitude, that is systemic, multi-level and reflected in authoritative cultural discourses” (p. 5). Transphobia is the conscious maltreatment and

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victimization of trans individuals based on fear, hatred, or disgust (Hill & Willoughby, 2005; Kennedy, 2013). Therefore, the discussion of transphobia and cisgenderism as a systemic social problem is essential in redirecting our focus from individual pathologies to social justice and social change. Psychiatric Power Moving away from individualized pathologies to social justice requires consideration of the role of psychiatric power in the diagnosis, treatment, and experiences of those categorized as “mentally ill.” Under the authority of mental health legislation and the legitimizing discourse of medicine and science (Boyle, 1999), psychiatrists have the ability to commit individuals, physically restrain them, drug them, and perform treatments on them without their consent (Breggin, 1993; Pescosolido et al., 1999; Sailas & Wahlbeck, 2005; Szasz, 2007; Winick, 1997). Acting on others from a position of authority is the predominant understanding of power – a top-down approach in which powerful individuals oppress the vulnerable or powerless. Szasz’s (2007) approach to understanding psychiatric power was to foreground the role of coercion and consent. He described voluntary and involuntary psychiatry, framing only the latter as coercive. Within voluntary psychiatric practice, Szasz highlighted the role of consent by comparing it to other situations, such as the medical treatment of physical illnesses. He argued that “typically, physically ill persons accept the patient role and are cared for without being subjected to coercive social control. In contrast, many mentally ill persons reject, or would like to reject, the role of mental patient; this is one of the main reasons why they are subjected to coercive social control” (p. 23). However, this understanding of consent underestimates the role of coercion within medical settings, particularly when individuals are socially disadvantaged because of a range of axes of power and privilege (Collins, 1990). In addition, the non-consensual medical interventions on intersex children have been well documented (Ehrenreich & Barr, 2005; Kessler, 2000; Reis, 2011), as have the barriers to gender-confirmation surgery for transgender individuals who have such procedures done (Garner, 2011, 2014; Lev, 2006). This is due to not only the coercive form of psychiatry but also the intersecting social inequalities of gender, age, and psychiatrization (Cole, 2009; LeFrançois, 2013) within a context of (privileged) medical authority. The specific social location of each individual influences the different experiences of medical and psychiatric authority. For instance, although the perspectives of intersex children are dismissed because of their

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age, and the perspectives of trans adults are superseded because they are pathologized, both lose the ability to make decisions regarding their body because of a narrow, medicalized definition of gender identity and biological sex that is used to justify the decisions made by the medical profession and parents. These social inequalities of sexism, ageism, and sanism function to disempower particular groups in their ability to make decisions about their physical or mental health. For example, the predominant focus on issues related to intersex and transgender children infantilizes intersex and transgender people through a lack of representation of adults (OII Australia, 2011). This, in conjunction with the framing of children as fundamentally unknowledgeable and incompetent (Alderson, 2005; Burman, 1996, 2011), and the psychiatrization of these individuals, which also assumes mental incompetence (Szasz, 2007), positions intersex and transgender individuals as incapable of making decisions for themselves. Such positioning privileges the accounts and decisions of the “rational” and knowing others, that is, doctors and psychiatrists. The combination of top-down sovereign power (Foucault, 1978) and intersecting social inequalities results in the application of psychiatric and medical coercion against socially disadvantaged groups. As Parker et al. (1995) describe, psychiatric systems are imbued with power regardless of the intentions of the individual psychiatrists. The power of psychiatry also lies in its ability to define what is normal. As Caplan (1995) identifies, “if we allow others to decide whether or not we are normal, we lose the power to define ourselves” (p. 1). When transgender individuals draw on psychiatric discourse to define their experiences, the result can be shame, self-blame, and self-loathing. This is illustrated by Wyss’s (2004) research on the victimization of transgender youth, during which one interviewee stated, “… like I deserved all of it because I wasn’t normal, like I was sick, bad, wrong, diseased ... and also, something I can’t explain further than to say it made me feel like I was somehow a perpetrator – because I knew that the nature of what was ‘wrong’ with me was sexual / about my sex, I felt like I was criminal in some way, or I was perpetrating unwholesomeness on all of the normal people around me, just by being there” (p. 719). Psychiatry defines what is normal through an overabundance of definitions of abnormality. As Derrida (1978) describes, concepts are defined by what they are not. Thus, the definition of abnormality is dependent on that of normality. The meanings of these two concepts (abnormality and normality) are connected in a conceptual binary. For this reason the definitions of abnormality within psychiatry, whether related to sexuality, gender, or childhood, also define “normal” sexuality, gender, and childhood precisely

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because these “normal states” are not included in the infamous DSM. If individuals are not pathologized through a diagnostic label, they are impelled to live according to these unspoken (but known) expectations of normality. Owing to the vast accumulation of psychiatric diagnoses since the inception of the DSM in the early 1950s, several critics have argued that the concept of normality has become so constrained that it represents an idealized form of White, middle-class, heterosexual, cisgender masculinity that is impossible to attain (Ali, 2004; Caplan & Cosgrove, 2004; Cermele, Daniels, & Anderson, 2001; Metcalfe & Caplan, 2004; Tosh, 2013; Ussher, 1991), and that “the very idea of normality or mental health is at stake” (Rose, 2006, p. 474). The way in which psychiatry categorizes and defines normality constitutes a form of power that is less visible than top-down sovereign power but more pervasive. This idealized concept of normality functions “like surveillance, and with it normalization becomes one of the great instruments of power at the end of the classical age. For the marks that once indicated status, privilege and affiliation were increasingly replaced – or at least supplemented – by a whole range of degrees of normality indicating membership of a homogeneous social body but also playing a part in classification, hierarchization and the distribution of rank. In a sense, the power of normalization imposes homogeneity” (Foucault, 1977, p. 184). Through self-surveillance we moderate our own behaviour because of the potential reactions of others, thus reducing the need for coercion. This is the internalization of the disciplinary gaze (Foucault, 1977) that Feder (1997) describes in relation to transgender children and the diagnosis of gender dysphoria. He explains how the collaboration between school, family members, and psychiatrists positions the gender non-conforming child as “deviant” and thus gives (conforming) children “a particular kind of power” (p. 200) through teasing, name calling, harassment, and general social ostracism. These combined strategies act as deterrents, supporting other children in not deviating from gender norms and encouraging conformity through the internalization of other people’s expectations of gender through careful monitoring. As Feder (1997) asserts, a child never stops being part of the family unit and therefore is always subject to regulation and the disciplinary gaze (Tosh, 2011a). Gender Non-conformity or Psychiatric Non-compliance? It is important, then, to consider the role of power in the latest changes made to the gender dysphoria diagnosis. In 2013 the APA released the fifth edition of the DSM. The diagnosis of gender identity disorder had undergone

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extensive critique and criticism, and the DSM-5 (APA, 2013) embodied significant changes to the concept, such as the aforementioned name change to gender dysphoria. Another of these changes is the explicit inclusion of intersex as a key feature of the gender dysphoria category (see also Tosh, 2013); this inclusion occurred through the addition of a specifier for clinicians to indicate whether or not the individual had gender dysphoria with “a disorder of sex development” (APA, 2013). Disorder of sex development is a medical term applied to intersex individuals, but it is controversial because of its framing of intersexuality as pathological (see Diamond, 2009). The merging of transgender and intersex into a single psychiatric category related to gender identity and biological sex has subtler influences as well – most notably, the inclusion of the term assigned gender in the diagnostic criteria. Intersex individuals are often assigned a gender based on the decision of medical practitioners and surgeons (Boyle, Smith, & Liao, 2005). The term assign relates to categorization and groupings; it is frequently used within psychiatry (and many other disciplines) when individuals are assigned to groups for randomized controlled trials (for example, Bergh et al., 2002; Cohen et al., 2007). Therefore, individuals with this diagnosis have been assigned to a gender group. In assigning gender, medical professionals assume authority in decisions that are often based on heteronormative and phallocentric understandings of sexuality. For instance, in decisions regarding vaginal surgery on intersex infants, professionals can prioritize the role of penetration based on the assumption that as an adult the individual will want to participate in heterosexual intercourse (Reis, 2009). The assigning of gender disempowers those whom it categorizes, by privileging psychiatric discourse. Therefore, the latest DSM diagnosis of gender dysphoria, with its emphasis on assigned gender, does not describe an incongruence between gender identity and physical anatomy; it describes an incongruence between the way gender is expressed by an individual and the gender that has been assigned to them by others. This is a notable difference from the DSM definition of gender identity disorder, which focused on incongruence within the individual. The criteria for gender dysphoria incorporate a more adaptable concept of biological gender and therefore have the potential to be compatible with social constructionist approaches to sex (for example, Kitzinger, 1999). However, by allowing gender assignment by clinicians to hold such an important place, these criteria simultaneously remove the power from individuals to define their own gender, particularly silencing those who contradict dominant discourses or develop alternative concepts.

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Consequently, in addition to their perceived non-conformity with hegemonic constructions of masculinity and femininity, individuals are seen to be refusing to comply with the gender that has been assigned to them by those in a position of (medical or scientific) authority. This frames gender non-conformity as psychiatric non-compliance. Emke (1992) identifies several assumptions within medicine regarding compliance, such as “doctor knows best” and the duty of the “patient” to comply as part of the role of being “sick.” The medical monopoly compounds these assumptions by making it appear that there is only one way to formulate emotional distress and subsequent treatment (Conrad, 1992; Emke, 1992). Within psychiatry there is only one diagnostic text, which encourages compliance rather than individual decision-making. Compliance is of great concern to the profession of psychiatry (and the pharmaceutical industry), with an immense amount of research dedicated to finding out why individuals do not comply with psychiatric treatment and to creating ways to encourage compliance (for example, Fleischhacker, Meise, Günther, & Kurz, 1994; Hack & Chow, 2001; Lysaker et al., 1994). For example, O’Donnell et al. (2003) describe “compliance therapy” based on cognitive behavioural therapy (CBT), and motivational interviewing that is used to “improv[e] adherence to prescribed drug treatment” (p. 1). However, as Playle and Keeley (1998) outline, non-compliance and psychiatry form a more entangled phenomenon that includes issues around power, personal choice in therapy, and the construction of non-compliance as “deviant” or a “symptom” of mental illness. Ergo, it is not only the gender non-conformity but also the non-compliance that is considered pathological by mainstream psychiatry. Social Change: Organized Non-compliance Although psychiatry pathologizes non-compliance and frames it as an undesirable treatment outcome, others have found the concept useful when resisting and transforming oppressive institutions and practices. Emke (1992) defined organized non-compliance as “the organized, conscious actions of patient groups – in light of the theoretical assumption that such activity is a political and therapeutic strategy for reclaiming power over the medicalized body” (p. 58). He used the case of the feminist health movement stemming from the book Our Bodies, Ourselves as an example of how to produce an alternative to the mainstream approaches that misunderstand the needs of women, that control resources and decision-making, and that

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dominate the way in which the system is structured. As Emke, (1992) stated, “the women’s health movement of 1970s to the present is the clearest modern example of organized non-compliance. It represents more than simply a questioning of the medical orthodoxy, but also involves setting up alternative clinics, supporting unique therapies, and democratizing medical knowledge. This more pro-active stance did not automatically reject all therapy, but reevaluated it and attempted to strip the ideology from the therapy. This movement was aided by the publication of Our Bodies, Ourselves in 1969 and the establishment of two clinics by 1970 (in Chicago and Minneapolis)” (p. 66). Critiques of the psychiatric diagnosis of gender dysphoria thus draw on feminism as well as campaigns and perspectives from critical psychology, psychiatric survivors, and transgender and intersex scholars and activists. Gender dysphoria simultaneously represents a long history of problematic psychiatric diagnoses, the pathologization of femininity, cisgenderism, and the categorization of bodies into two distinct sexes. Efforts at organized non-compliance, then, can draw on a range of resources to challenge current practice and promote social change. Emke’s (1992) statement also illustrates that organized non-compliance requires going beyond critique, or, as Tiefer (2011) puts it, in order to promote social change, campaigns need to involve resistance and transformation in addition to their criticism of the status quo. There has been varied resistance to the pathologization of gender nonconformity over several decades. This has included a wide range of strategies from diverse communities who are affected by the ever-changing diagnostic category now known as gender dysphoria. When the diagnosis was first put forward, members of the American Psychiatric Association’s Committee on Women flooded the chair of the DSM taskforce, Robert Spitzer, with letters outlining their objections, an action that had “considerable impact on the final diagnosis” (Bryant, 2006, p. 33). Public protests directed at the American Psychiatric Association have also been a consistent feature of resistance. In 1996 during the revisions of the fourth edition of the DSM (eventually producing the DSM-4-TR in 2000), the organizations Transsexual Menace and GenderPAC (Gender Public Advocacy Coalition) carried out protests at an APA conference in Chicago (InYourFace, 1996), aiming to “challenge the APA’s use of Gender Identity Disorder (GID) to diagnose a disease and stigmatize individuals who transcend gender norms” (“Inhumane Psychiatric Diagnosis Met with Protest,” 1996, para. 1). Protests had also occurred at previous APA conferences as well as at the APA’s Washington headquarters (GenderTalk, 1996).

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In 1996 the National Gay and Lesbian Taskforce released a statement directly challenging the gender identity disorder diagnosis (Lobel, 1996), and the organization GID Reform Advocates was set up to campaign for reform of the diagnosis, rather than its removal, owing to the system of insurance reimbursement in the United States8 (GenderTalk, 1996). In 2009 individuals representing a range of challenges to the DSM and the APA protested the organization’s annual conference in San Francisco, creating a “Festival of Resistance” (MindFreedom, 2009). Protesters included psychiatric survivors, transgender individuals, and advocates, all spearheaded by GID Reform Advocates to “protest how the American Psychiatric Association (APA) is handling revisions to ‘gender identity disorder’ and related diagnoses in their fifth edition of the ‘Diagnostic and Statistical Manual of Mental Disorders’ (DSM-V)” (Winters, 2009b, para. 2). This protest included a variety of speakers, such as Madeline Deutsch, who said, “I am a queer, transgender woman … my identity is not pathological. My identity does not belong miscategorized in your book. We live in a society based on individual liberties and informed consent. Each individual should be allowed to make decisions about how to live their own life” (Burke, 2011, p. 194) The DSM-5 was rejected by several organizations following the release of its proposals in 2010, including the British Psychological Society (2011), the Society for Humanistic Psychology (Division 32) of the American Psychological Association (n.d.), and the National Institute of Mental Health (Insel, 2013). Condemnation of the diagnostic manual related particularly “to potentially stigmatizing medical labels being inappropriately applied to normal experiences and also to the unnecessary use of potentially harmful interventions” (British Psychological Society, 2011, para. 6). In addition to these general criticisms aimed at the APA and the DSM, in 2010 several subsections of the British Psychological Society worked with feminist, trans, intersex, and queer activists and academics to specifically challenge psychiatric interventions on gender non-conforming children, interventions that are made possible by the diagnosis of gender dysphoria in childhood. This challenge addressed Dr Ken Zucker, due to his keynote presentation at the society’s Division of Clinical Psychology Conference in Manchester, United Kingdom, as well as his positions as the chair of the Sexual and Gender Identity Work Group of the DSM-5 Revisions, and the head of the gender identity disorder clinic at the Centre for Addiction and Mental Health. Zucker’s (2006) approach to treatment of gender nonconforming children aims “to make youngsters comfortable with their gender identity (to make it correspond to the physical reality of their

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biological sex)” (p. 550), with the prevention of transsexualism in adulthood as a treatment goal – albeit, one that Zucker et al. (2012) argue needs to be contextualized in terms of “a better psychosocial adjustment” for the child (p. 392). This approach is considered controversial and has attracted criticism from academics, clinicians, and activists over many years (Burke, 1996; Hird, 2003; Langer & Martin, 2004; Lev, 2006; Winters, 2009a). It also contrasts with approaches that embrace gender diversity (Tosh, 2016), and consequently, there remains much disagreement within the profession regarding psychological interventions with gender non-conforming children. The Manchester protest was part of a larger, academic-activist intervention that embraced complexity, contradiction, and intersectionality. It brought together several long-standing areas of criticism: activist feminist and LGBT communities, and those from within the profession who condemn approaches that discourage gender non-conformity. This involved building trust between those from the professions of psychology and psychiatry and those who had been pathologized and oppressed by them. There were also many who were both activists and academics working within psychology. The protest, and the ongoing campaign, occurred alongside an accumulation of public criticism and increasing media interest, as well as the criminalization in several areas in the United States and Canada of LGBT reparative therapies (Capehart, 2015; Ling, 2015; Steinmetz, 2015). The protest itself emerged after frequent meetings in which feminist, trans, lesbian, gay, and intersex individuals discussed complexities and debates related to trans activism and the gender dysphoria diagnosis. The tense relationship between feminism and transgender communities (due to trans-exclusionary radical feminism) also made for a cautious beginning; however, over time, feminist group members showed themselves to be trans-inclusive. Through the sharing of personal experiences, concerns, and perspectives the meetings educated those who were unfamiliar with transgender issues. Some feminists talked about the difficulties and pressures of compulsory femininity; others in the group discussed the pain of not being able to express their femininity without fearing for their safety. Listening to the experiences of others enabled critical discussion of different forms of activism and of the often-exclusionary terms of feminism, queer, and trans. People also discussed the conflicting perspectives regarding the diagnosis itself. Those who did not rely on the diagnosis for support or medical interventions were exposed to the experiences of those who needed it – that is, of those who needed the “golden ticket” of belonging to a medically sanctioned diagnostic category to access gender identity services (Lev, 2006). This required those with feminist perspectives to consider the diagnosis

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beyond its gender stereotyping and the proposed solution of removing the diagnosis altogether from the DSM. Thus, despite different perspectives, the meetings enabled collaborative campaigning through a commitment to valuing multiple (and often contradictory) points of view (Tosh, 2014). In other words, these events can be described as intersectional activism, which has been defined as “activism that addresses more than one structure of oppression or form of discrimination” (Doetsch-Kidder, 2012, p. 3). Prior to Zucker’s presentation, participants of these meetings promoted their objections through an online petition (iPetitions, 2010) and a statement supported by the Psychology of Women and Psychology of Sexualities sections of the British Psychological Society (Tosh, 2011b), in addition to some local and international media coverage (“Intersex in Australia,” 2010; Lockhart, 2010). Copies of the statement were provided to those who attended the keynote presentation, and Zucker was introduced as both an “inspiring” and “controversial” individual by the chair of the Division of Clinical Psychology prior to his presentation. This critical introduction and the availability of the statement were the result of several discussions with members of the division’s central committee (see Tosh, 2011c). While more than sixty people were physically present on the freezing winter’s day of the keynote address and stood outside the Lowry Hotel in Manchester, the statement and the online petition showed that many more people supported the objections of the protesters (Tosh, 2011a). In addition, Natacha Kennedy, who had organized a protest against gender-­reparative approaches in London in 2008, and the present author were invited to the conference to debate the issues regarding gender dysphoria treatment in childhood, evidence that the views of protesters were being taken seriously (Tosh, 2011d). Similarly, public protests were organized in 2013 in response to another presentation regarding the DSM-5 and gender dysphoria that took place at a conference in Cambridge, United Kingdom, where professional and academic objections were also heard, and trans activist perspectives included (see Davy, 2013). In 2015 the gender identity clinic at the Centre for Addiction and Mental Health (where Zucker was the clinical and research lead) underwent what some described as a “damning” external review (“‘Conversion Therapy’ Controversy at CAMH Transgender Clinic,” 2015; Rushowy, 2015; Ubelacker, 2015; Zinck & Pignatiello, 2015) and was subsequently closed.9 Caplan (1995) argues that public protest can be helpful to those who have been harmed by diagnosis. The importance of speaking out and transforming “silence into language and action” (Lorde, 1978, p. 40) is an essential aspect of resistance and promoting social change. As Chase (2006)

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describes in relation to intersex activism, “I started telling my story indiscriminately to everyone I met.” She goes on to describe how sharing her story enabled her to meet others who had been through similar experiences, and that the development of the Intersex Society of North America and the Hermaphrodites with Attitude newsletter10 both provided opportunities for sharing stories and peer support. This mirrors feminist consciousnessraising and the similar methods of psychiatric survivor movements (Lindow, 1999). Sharing these stories through public protests, pamphlets, websites, blogs, books, and so on breaks the silence and provides a counter (or reverse) discourse to the hegemonic psychiatric and medical narrative that dominates in discussions of gender non-conformity. Trans-formation: The Formation of a Trans System? The fundamental goal of changing the way individuals are treated by medicine (and psychiatry) is a common one, shared by many communities that are invested in campaigning against pathologization. As Chamberlain (cited in Caplan, 1995) states, “people who have been patients know from their own experience that warmth and support … were helpful and that being thought of and treated as incompetent were not” (p.  285). Chase (2006) highlights the importance of publicizing “the emotional and physical carnage resulting from medical interventions” (p. 306), in achieving the fundamental goal of changing the medical treatment of intersex children. The difficulty arises from the professional dismissal of the voices of those who are labelled. Like consciousness-raising and the health collectives that began with the publication of Our Bodies, Ourselves, starting with the experiences of those in need of health services provides a system based on “the expressed needs of people in crisis or those who have survived crises, rather than downwards from legal requirements and state policy” (Lindow, 1999, p. 220). Building a system from the ground up requires services to be led by transgender and intersex individuals and others who are better qualified to understand the needs of those experiencing gender-related distress, much like psychiatric survivor alternatives to mainstream psychiatry (for example, the Hearing Voices Network). A socially just system requires the questioning of mainstream approaches (Caplan, 1995), examination of the role of social inequality in the education and training of those who aim to reduce emotional distress (Williams, 1999), and the valuing of first-hand experiences and subjectivity over atheoretical and reductive approaches (Boyle, 1999). Examples of such trans-led initiatives include drop-in clinics

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that provide information on issues such as transphobia and discrimination based on gender identity (for example, TransgenderNI),11 information and advice services (for example, Scottish Transgender Alliance),12 community groups, clubs, and organizations (for example, Gendered Intelligence, Transforum Manchester, Catherine White Holman Wellness Centre),13 organizations lobbying for professional and political change (for example, Press for Change, GID Reform Advocates),14 and attempts to change media representations (for example, Trans Media Watch).15 However, like the health initiatives stemming from Our Bodies, Ourselves, these changes need to be incorporated into the medical system because of the need to provide access to gender-confirmation procedures. Rather than debate the need for the DSM and a diagnosis to secure access to medical care and support (which is required work in the short term), discussion on the development of a trans-led system that holds the issues of access to bodymodification interventions and the depathologization of trans identities at its centre is essential in planning long-term support for gender non-­conforming individuals. This is an important area for intervention, not only to gain access to support and surgery but also to challenge the role that psychiatry plays in promoting the pathologization of gender non-conforming people; stigma and oppression form part of the wider issue of psychiatrization. However, psychiatry should not be the sole focus of activism and resistance. Gender-confirmation surgery is a privilege for some transgender individuals, but safety, food, and shelter are a struggle for others. Homelessness, violence, racism, and financial difficulties can take precedence over surgical interventions for many who are struggling with multiple oppressions (Mottet & Ohle, 2006; Roen, 2002; Singh, 2013; Wyss, 2004). Therefore, social justice initiatives need to reflect the diversity of gender non-­conformist communities, in addition to targeting the numerous intersecting oppressions faced by gender non-conformists. Campaigns for change need to also consider other oppressed groups and social inequities and the ways in which interventions could affect them. It is important to get to know those who participate in the campaigning, to reach out to those who are not represented, and to listen to and incorporate those who feel excluded from (or further oppressed by) the campaign. Conclusions Trans issues and activism are complex and contain a range of debates and conflicts (Burke, 2011), including disagreement on whether trans activism

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should aim for equal rights or justice (Spade, 2011). Aiming for equal rights would include campaigns such as access to health care, whereas working for social justice would involve general attempts to depathologize transgender identities. Equal rights goals require activists to work with the systems already in place, such as the DSM and the diagnosis of gender dysphoria. This may include reforming processes to make gender-confirmation procedures more accessible for transgender individuals. Depathologization of transgender identities has included approaches aimed at removing the gender dysphoria diagnosis. However, activists have had to strike a difficult balance between that goal and keeping medical procedures available. In this chapter I have highlighted the role of power in the process of psychiatric diagnosis and treatment, as well as the ways in which noncompliance is viewed as problematic within psychiatry but offers useful possibilities for social change and justice. Therefore, while access to health care is required work in the short term to enable those experiencing distress to access support and procedures, long-term strategies of organized non-compliance, including the development of trans-led medical systems, are also required to provide a future for gender non-conforming individuals without psychiatry.

NOTES 1 I use quotation marks here to illustrate that I am referring to a discursive concept, rather than trans individuals or their experiences. These quotation marks are not used as scare quotes to undermine or invalidate the experiences of trans people but to indicate that my analysis in this chapter refers to the concept produced by psychiatry and psychology. 2 This was in addition to the diagnosis of “transsexualism,” which was initially applied to adults but later dropped as a disorder. The DSM-4 (APA, 1994) defined transsexualism as “severe gender dysphoria” (p. 771). 3 As can be observed from these quotations, the DSM assumes that the child is a “girl” or “boy” based on their assigned gender, rather than acknowledging pronouns that better suit the gender identity of the child; in this way, the profession often misgenders individuals (also see Ansara and Hegarty, 2012). 4 This is not given as a universal definition of transgender; rather it is a description of my use of the term in this chapter. The word itself is not without controversy, and it is not used by all who fit the definition I have provided here (see Tosh, 2016).

Gender Non-conformity or Psychiatric Non-compliance?  273 5 This is also problematic; see earlier in this chapter. 6 Note that this controversy is related to the term used, not to the existence of multiple gender expressions. 7 While these examples illustrate the possibility of structuring gender in many ways, they also show how the appropriation of such concepts can lead to further oppression for some communities. For instance, the cultural appropriation of First Nations’ gender identities and concepts within nonNative queer spaces (Cameron, 2005) strips the concept of its context and continues the taking of cultural symbols from oppressed groups, or, as Uwujaren (2013) states, “Westerners are used to pressing their own culture onto others and taking what they want in return” (para. 11). Cultural appropriation, then, “is an exercise in privilege” (para. 20). 8 In the United States a diagnosis is required in order for individuals to receive insurance payments to cover their medical care costs. 9 There have been calls to reopen the clinic based on arguments that its closure was “politically motivated” due to pressure from “transgender activists” (Bancroft et al., 2016, para. 1–-2). There has also been support for the clinic closure from those who called for “more services to better support gender diverse children and their families through an affirming and trans-positive model of care” (Ansara et al., 2016, para. 4). 10 See www.isna.org for more details about this publication. 11 See www.transgenderni.com. 12 Visit www.scottishtrans.org. 13 See http://genderedintelligence.co.uk; www.transforum.org.uk; and www.cwhwc.com. 14 See www.pfc.org.uk; and www.gidreform.org. 15 See www.transmediawatch.org. REFERENCES Ahmed, S.F., Morrison, S., & Hughes, I.A. (2004, September). Intersex and gender assignment: The third way? Archives of Disease in Childhood, 89(9), 847–50. Medline:15321864 http://dx.doi.org/10.1136/adc.2003.035899 Alderson, P. (2005). Designing ethical research with children. In A. Farrell (Ed.), Ethical research with children (pp. 27–36). Maidenhead, UK: Open University Press. Ali, A. (2004). The intersection of racism and sexism in psychiatric diagnosis. In P. Caplan & L. Cosgrove (Eds.), Bias in psychiatric diagnosis (pp. 71–6). Oxford: Rowman & Littlefield.

274  Jemma Tosh American Psychiatric Association (APA). (2013). Diagnostic and statistical manual (5th ed.). Washington, DC: Author. Ansara, G., Bouchard, G., Brill, S., Bryson, M., Clement, K., Craig, A., et al. (2016). Support affirmative care for trans and gender diverse kids! Retrieved from http://www.ipetitions.com/petition/support-affirmative-care-for-trans-kids Ansara, G., & Hegarty, P. (2012). Cisgenderism in psychology: Pathologising and misgendering children from 1999 to 2008. Psychology and Sexuality, 3(2), 137–60. http://dx.doi.org/10.1080/19419899.2011.576696 Baklinski, T. (2013, 15 January). Psychiatry expert: “Scientifically there is no such thing as transgender.” Life Site News. Retrieved from http://www .lifesitenews.com/news/psychiatry-expert-scientifically-there-is-no-such -thing-as-transgender/ Bancroft, J., Blanchard, R., Brotto, L., Friedman, R., Graham, C., Lalumière, M., et al. (2016). Open letter to the Board of Trustees of CAMH. Retrieved from http://www.ipetitions.com/petition/boardoftrustees-CAMH Bergh, C., Brodin, U., Lindberg, G., & Södersten, P. (2002, 9 July). Randomized controlled trial of a treatment for anorexia and bulimia nervosa. Proceedings of the National Academy of Sciences of the United States of America, 99(14), 9486–91. Medline:12082182 http://dx.doi.org/10.1073/pnas.142284799 Boyle, M. (1999). Diagnosis. In C. Newnes, G. Holmes, & C. Dunn (Eds.), This is madness: A critical look at psychiatry and the future of mental health services (pp. 75–90). Ross-on-Wye, UK: PCCS Books. Boyle, M.E., Smith, S., & Liao, L.M. (2005, July). Adult genital surgery for intersex: A solution to what problem? Journal of Health Psychology, 10(4), 573–84. Medline:16014393 http://dx.doi.org/10.1177/1359105305053431 Braun, V. (2005). In search of (better) sexual pleasure: Female genital “cosmetic” surgery. Sexualities, 8(4), 407–24. http://dx.doi.org/10.1177/1363460705056625 Breggin, P. (1993). Toxic psychiatry: Drugs and electroconvulsive therapy, the truth and better alternatives. London: Harper Collins. British Psychological Society (2011, 12 December). Society statement on DSM-5. Retrieved from http://www.bps.org.uk/news/society-statement-dsm-5 Bryant, K. (2006). Making gender identity disorder of childhood: Historical lessons for contemporary debates. Sexuality Research & Social Policy, 3(3), 23–39. http://dx.doi.org/10.1525/srsp.2006.3.3.23 Bryant, K. (2008). In defense of gay children? “Progay” homophobia and the production of homonormativity. Sexualities, 11(4), 455–75. http://dx.doi.org /10.1177/1363460708091744 Burke, M. (2011). Resisting pathology: GID and the contested terrain of diagnosis in the transgender rights movement. In P. McGann & D. Hutson (Eds.), Sociology of diagnosis (pp. 183–210). Bingley, UK: Emerald Group Publishing. http://dx.doi.org/10.1108/S1057-6290(2011)0000012013

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Gender Non-conformity or Psychiatric Non-compliance?  279 Messner, M. (1992). Power at play: Sports and the problem of masculinity. Boston: Beacon Press. Metcalfe, W., & Caplan, P. (2004). Seeking “normal” sexuality on a complex matrix. In P. Caplan & L. Cosgrove (Eds.), Bias in psychiatric diagnosis (pp. 121–6). Oxford: Rowman & Littlefield. MindFreedom (2009, 17 May). Successful protest of psychiatric meeting. Retrieved from http://www.mindfreedom.org/kb/old-gateways/apa/apa-protest-report Mottet, L., & Ohle, J. (2006). Transitioning our shelters: Making homeless shelters safe for transgender people. Journal of Poverty, 10(2), 77–101. http:// dx.doi.org/10.1300/J134v10n02_05 Nanda, S. (1993). Hijras: An alternative sex and gender role in India. In G. Herdt (Ed.), Third sex, third gender: Beyond sexual dimorphism in culture and history (pp. 373–418). New York: Zone Books. Nelson, S. (2013, 14 June). Male, female or intersex? “Third gender” will be official in Australia next month. Retrieved from http://www.huffingtonpost .co.uk/2013/06/14/male-female-intersex-third-gender-australia_n_3442123.html O’Donnell, C., Donohoe, G., Sharkey, L., Owens, N., Migone, M., Harries, R., … O’Callaghan, E. (2003, 11 October). Compliance therapy: A randomised controlled trial in schizophrenia. British Medical Journal, 327(7419), 834–8. Medline:14551096 http://dx.doi.org/10.1136/bmj.327.7419.834 Organization Intersex International Australia (OII Australia). (2011, 22 May). “ISGD” and the appropriation of intersex. Retrieved from http://oii.org.au /13651/isgd-and-the-appropriation-of-intersex/ Parker, I. (2014). Discourse dynamics: Critical analysis for social and individual psychology. Hove, UK: Routledge. Parker, I., Georgaca, E., Harper, D., McLaughlin, T., & Stowell-Smith, M. (1995). Deconstructing psychopathology. Thousand Oaks, CA: Sage. Pescosolido, B.A., Monahan, J., Link, B.G., Stueve, A., & Kikuzawa, S. (1999, September). The public’s view of the competence, dangerousness, and need for legal coercion of persons with mental health problems. American Journal of Public Health, 89(9), 1339–45. Medline:10474550 http://dx.doi.org/10.2105 /AJPH.89.9.1339 Playle, J.F., & Keeley, P. (1998, February). Non-compliance and professional power. Journal of Advanced Nursing, 27(2), 304–11. Medline:9515640 http:// dx.doi.org/10.1046/j.1365-2648.1998.00530.x Reis, E. (2009). Bodies in doubt: An American history of intersex. Baltimore, MD: John Hopkins University Press. Reis, E. (2011, April). Intersex, fetal sex, and the disordered medical world. Paper presented at the Medicalization of Sex Conference, Vancouver, BC.

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PART FOUR Media as a Site of Social (In)Justice

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10 (De)Pathologization: Transsexuality, Gynecomastia, and the Negotiation of Mental Health Diagnoses in Online Communities T. GARNER

Imagine two groups of people who identify as men and have breast tissue that they want to have surgically removed. For one group, access to surgery is freely granted, with minimal restrictions, while, for the other, access is dependent on a mental health diagnosis and multiple other circumscriptions. The former are cis1 men with gynecomastia, medically defined as “excess” breast tissue, while the latter are medically defined as transsexuals through a perceived misalignment between their assigned sex at birth as female and their self-identity as male. Both groups are recognized in the medical literature as experiencing psychological discomfort, but it is only in relation to transsexuals that this psychological discomfort is pathologized through a mental health diagnosis. The latter group is marked with gender dysphoria in the most recent version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) (APA, 2013), a shift in terminology from gender identity disorder, which had been the term used in the previous edition (APA, 1994).2 For men with this diagnosis, the discomfort experienced in relation to unwanted breast tissue is seen as part of a larger set of psychological problems. In contrast, for men with gynecomastia, the often-severe levels of discomfort are entirely normalized as the “natural” response to “excess” breast tissue. This divergence has significant consequences for these two sets of bodies. The discursive framing within the two separate medical contexts has the effect of rendering unnatural the transsexual who desires surgical modification, while maintaining the naturalness and normalcy of men with gynecomastia who want the same. Bringing these groups together analytically through a comparative interrogation allows me to explore this inconsistency and interrogate its material and political implications.

286  T. Garner

Much of the critical academic literature on “sex-reassignment surgery” critiques the mental health diagnosis of transsexuals and challenges pathologization. However, this approach is complicated by the fact that, in many jurisdictions, access to the hormonal and surgical procedures that constitute sex-reassignment surgery is dependent on this diagnosis, as is the health insurance coverage that makes the procedures financially accessible. In contrast, chest surgery for men with gynecomastia is medically defined as cosmetic surgery, and the financial cost is borne by the individual patient. Rather than entering this debate directly, my own analysis takes a new direction. I examine narratives of the lived experience of the distinction between sex-reassignment and cosmetic surgeries; in particular, I focus on how the online communities that are formed around the two groups of men negotiate, perpetuate, and resist these markings of health and disease. My analysis is less concerned with the practical issue of access to surgeries than with the medical context through which access is delimited and how that context affects our understandings of the nature of the body. Considering the experiential narratives on their own terms is critical in evaluating mental health ideology and practice. Internet discourse is currently a central site through which bodies are constituted, particularly in relation to the bodily practices under consideration in this chapter. Given the extent to which we are “plugged in,” we have become networked bodies. According to tracking surveys of the Pew Research Center’s Internet and American Life Project, 86 per cent of American adults now use the Internet, a number that has grown steadily since their first recording in 1995, when only about 14 per cent of American adults used the Internet.3 Of further significance, 72 per cent of Internet users have searched online within the past year for “health information of one kind or another,”4 the third-highest activity after checking email (92 per cent) and using a search engine for general information (92 per cent).5 Not only are people searching the Internet for health information, but they are becoming “online diagnosers.”6 Thus, the Internet is more than a primary communication device; it has become a significant site through which the markings of health and disease are negotiated. One form of the Internet in particular, online communities, has the potential to provide a critical space for both maintenance of and resistance to dominant biomedical framings that structure current beliefs about the body and the mind and the relations between them. Online communities can also provide a reconceptualization of harmful medical understandings and, given the current technological era in which online activity can spark community organizing, have the potential to change medical practice. Thus, the interrogation

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I conduct in this chapter is a way to incorporate a social justice perspective into mental health debates, and my analysis can be considered an exploration of the ways in which people with diagnoses of mental disorder resist the stigmatization and dehumanization of this biomedical process and reimagine new ways of being. Rheingold (2000) uses the term virtual community to describe “social aggregations that emerge from the Net when enough people carry on those public discussions long enough, with sufficient human feeling [italics added], to form webs of personal relationships in cyberspace” (p. xx). Thus, I focus on specific web forums that operate as virtual support groups, because support groups are a form of social organization that lends itself to community formation due to the feelings that emerge during people’s interactions there. As noted by Rheingold (2000), the level of connection felt among members is the most significant condition for community formation online. This sense of connection is strong within both forums dedicated to transgender lives and those focused on men with gynecomastia. Transgender people or those with gynecomastia may never have talked to anyone in person about their bodily discomfort; they may be “closeted,” frightened, unaware of anyone else with their “condition,” or they may live in an isolated place. So, for both groups, recognizing themselves in others online and hearing their own experiences reflected back can be the basis for immediate associations that can lead to important social relationships. Through these web platforms, friendships are made, older generations pass on wisdom to the young, and people celebrate each other’s achievements in the good times and provide support during the bad; in short, online support groups become sites of community – sometimes even family. This level of connection and sense of responsibility towards each other is what makes these online forums significant as potential sites of conceptual and corporeal resistance to and maintenance of biomedical discourse. Exploring the narratives within these online groups from a social justice perspective is highly relevant to the lives of transgender people because the conceptions of the body identified within these narratives have the potential to challenge harmful attributions of mental illness and dominant notions of binary sex and gender. The analysis that follows is situated within a larger project I conducted from 2008 to 2010 that compared the medical discourse of gynecomastia surgery and transsexual chest surgery. Detailing the practical similarities and discursive divergences within the medical context represents a particularly strong challenge to the conception of transsexuality as mental instability; although this conception and attendant diagnostic labels potentially provide access to sex-reassignment

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surgery, they are fundamentally harmful attributions that contribute significantly to the exclusion of transsexual people from social and political life, including discrimination in housing, employment, and health care. Com­paring discourses in the medical context also allows a reconceptualization of chest surgery that does not pathologize patients, yet still maintains the necessity of the surgery. This reconceptualization is often asserted within the online discourse, where the transsexual body is associated with the gynecomastic body, and vice versa. The nature and implications of this association are at the heart of this exploration: how does it allow resistance to the pathologization and disempowerment of the mental health diagnosis associated with transsexuality? Given the social and economic harm of the diagnosis, as outlined above, this form of resistance has the potential to promote meaningful inclusion, as well as to challenge notions of binary sex and gender that underpin current mental health discourse. Binary Sex, Mental Health, and Transition Before the online analysis is presented, it is useful to provide a more detailed overview of the discursive differences between the medical literatures describing the two groups of men under consideration, and the context within which these medical knowledges exist. Despite numerous challenges from multiple arenas (or perhaps because of these threats), it is abundantly clear that the current Western social landscape continues to be marked by the logic of sexual difference; the notion of the binary sexed body remains in force, structuring public space, state legislation, medical knowledge, and cultural institutions (Currah & Moore, 2009; Currah & Spade, 2007; Spade, 2006, 2008). That the body is sexed as male or female is so much taken for granted that it is not considered an idea but a biological given, a natural fact, a material foundation. Contemporary Western society is grounded upon the belief that male and female are stable, incommensurable sexes separated by distinct corporeal differences (Fausto-Sterling, 1992, 2000; Laqueur, 1990; Oudshoorn, 1994; Shildrick, 1997). However, according to Thomas Laqueur (1990), in Making Sex: Body and Gender from the Greeks to Freud, this “two-sex model” is historically contingent. He describes how “the old model, in which men and women were arrayed according to their degree of metaphysical perfection, their vital heat, along an axis whose telos was male, gave way by the late eighteenth century to a new model of radical dimorphism, of biological divergence. An anatomy and physiology of incommensurability replaced a metaphysics of hierarchy in the representation of woman in relation to man” (pp. 5–6).

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Despite the relative newness of the idea of sexual difference, however, it persists as an ahistorical and transcultural phenomenon, or, in other words, a “natural” fact of life. Although in the old model the transition between men and women was more readily imaginable, the new model effectively disallows transition, as the notion of binary sex is grounded in the idea of the incommensurability of the sexes (Shildrick, 1997). Transsexuals may undergo the procedures of “sex-reassignment surgery,” but they never fully embody the “opposite” sex in the dominant social imaginary (Stryker, 2006). To a great extent the mental health diagnosis associated with transsexuality is based on the assumption of the absolute distinction of the sexes and the impossibility of transition, or at least the recognition of the immense scale of the transition (APA, 1994, 2013). In contrast, gynecomastia surgery is not associated in the medical discourse with transition; there is no crossing of the bodily boundary between sexes that is assumed to be impermeable. Gynecomastia surgery is merely understood to be a “correction,” a “restoration” of the “natural” male body, which is assumed to be always already there (Letterman & Schurter, 1969). This difference has a significant impact on the way the underlying conditions are framed within the medical discourse. While both conditions are identified as a “disorder,” the location of the disorder is fundamentally different. Despite the fact that these groups share psychological discomfort with their bodies and an insistent desire for surgical transformation, for transsexuals the disorder is located in the mind, while for men with gynecomastia it is in the body. Thus, with regard to the former, the following definition is found in the introductory pages of the most recent “Standards of Care for the Health of Transsexual, Transgender, and Gender Non-conforming People”7 (Coleman et al., 2011), produced by the World Professional Association of Transgender Health (an international, multidisciplinary “professional organization devoted to transgender health)8: “Gender dysphoria refers to discomfort or distress that is caused by a discrepancy between a person’s gender identity and that person’s sex assigned at birth (and the associated gender role and/or primary and secondary sex characteristics) … Some people experience gender dysphoria at such a level that the distress meets criteria for a formal diagnosis that might be classified as a mental disorder” (p. 5). In contrast, gynecomastia is simply described as the “excessive” development of breast tissue in men. The construction of gender dysphoria is grounded in the notion of distress, but the distress of men with gynecomastia, although frequently acknowledged, is rarely included as an element of the disorder. Consider this excerpt from a foundational article by

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Webster (1946) in the medical field of gynecomastia surgery: “The psychic trauma caused by the ‘reproach of effeminacy’ is the main reason for operative interference in gynecomastia of the benign type. In modern life when exposure to the body is so frequent, and this is particularly the case in military life, the gynecomastia patient is subjected to jibes and teasing from his fellows. The repeated ridicule may bring about changes in the individual’s behavior patterns. He hesitates to undress before others in the gymnasium or on the beach, and he refrains from going in swimming. He may even shrink from exposing himself in a thin undershirt. Thus, a complex is started which may lead to severe psychotic disturbances” (p. 560). Here, “psychic trauma” is not pathologized in relation to gynecomastia but is, in fact, taken explicitly as an indication for surgery. Within the online communities under consideration these distinct medical configurations are taken up in different ways, with transition being downplayed within the transsexual forum and emphasized in the gynecomastia forum. As I explicate in the analysis below, it is primarily through these techniques that the mental health diagnosis is resisted in the former and welcomed in the latter. Online Community as Discourse I read the text of these online communities using Foucauldian discourse analysis and thus consider discursive formations not as representations of some external reality but on their own terms and according to their specific internal characteristics. This form of analysis does not interpret statements but questions them about their modality of existence – that is, what it means that these particular statements appear, and not others (Foucault, 1970, p.  109). The question is not what a statement implies or what an author’s intention is, but why some statements are sayable while others are not. I am concerned not with judgment, whether it be condemnation or celebration, but with meaning; I am interested in reading the text for those discursive practices and figures that become intelligible within these communities. As Jonathan Sterne (1999) recognizes in Thinking the Internet, it is not about the “determination of what a given event on-line means for its participants (although this may be part of it), but how the possibilities for meaning are themselves organised” (p. 262). Foucault’s aim is not to exclude materiality from analysis, as many of his critics worry; rather, in this framework, discourse is inseparable from materiality. Discourse is not merely representation of materiality; it makes possible those forms of embodiment that are assumed to be prior to discourse,

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defining the contours of our bodies and the borders in between. As such, this form of discourse analysis has the potential to reveal the material implications of these textual configurations. It is fundamentally a political endeavour because it makes visible the corporeal markings of power and resistance. In the online communities under consideration I identify and interrogate the discursive operations through which the bodies that are marginalized and marked within the medical discourse – through the mental health diagnosis of gender dysphoria – resist this pathologization, and how men with gynecomastia paradoxically attempt to empower themselves through claiming some form of pathologization. While other texts are written by one author, or, if there are more, at least offer a relatively singular perspective, online forums are texts written by multiple authors, competing or collaborating over issues, which makes them very fertile sites for exploration. The online sites on which I focus are FTM Forum9 (a LiveJournal community) and gynecomastia.org10 (the largest online resource for information about gynecomastia). There are a vast number of transsexual online groups – many more than those dedicated to the issue of gynecomastia – covering topics ranging from fitness to family. In order to circumscribe my exploration, I have concentrated on FTM Forum because it is one of the most established general support groups; it has more members than have other groups of a similar nature; and, more significantly, it has more traffic, which signals an engaged and interactive membership. Finally, it has a more open membership call than that of many trans forums: “ftm is a forum for all self-identified female-to-male individuals or FTM-questioning individuals, as well as our friends, partners and supporters. In the context of this community, FTM is a blanket term referring to anyone who was assigned female at birth and who feels that that is an incorrect or incomplete description of their gender. There is no identity policing here – if you self-identify as an FTM or as a friend or ally, then you are welcome here.”11 This broad definition of FTM allows for multiple embodiments, identities, and perspectives to be represented within this space. As such, much debate centres on the negotiation of this multiplicity in relation to conceptions of FTM and trans, which makes FTM Forum a rich site for investigating the meaning of FTM embodiment. In contrast to the proliferation of transgender presence on the Internet, gynecomastia has a much more centralized existence online, with gynecomastia.org being the most significant hub of peer support. This narrower range is evident in the extent to which the journeys through cyberspace that are directed towards gynecomastia lead back to this one

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website, as well as in the large number of members it boasts – over 24,619, in comparison to only 3,109 on FTM Forum.12 Of course, while both of these web forums contain a large number of comments from a variety of participants, providing a multiplicity of perspectives, the Internet is far from being the ideal paradigm of communication. The online world is circumscribed to the extent that access to computers is structured by power configurations, such as race, class, and ability, as well as by the operation of these relations within cyberspace, though in different forms. For instance, some descriptions of what it means to be a man, the very embodiment under question within these communities, are criticized by some participants for their reliance on an unspoken White masculinity; the definition of maleness can never be separated from other intersecting power relations. After in-depth exploration of both forums this analysis focuses on two or three threads within each that I consider to be rich sites for reading the negotiation of these communities with the medical discourse that attempts to define them. Ethical Considerations As I have said, I consider online forums as text. This is not self-evident and has specific implications, so I want to spend some time here outlining my ethical approach to the Internet. The majority of ethical perspectives on Internet research assume the use of human subjects and the ethical considerations that go along with that approach (Frankel & Siang, 1999; King, 1996; Waskul & Douglass, 1996). However, Bassett and O’Riordan (2002) contest the human subjects research model, arguing that the realism underlying this perspective is constructed through an uncritical figuration of space in relation to the Internet. They emphasize that the Internet “is not simply a virtual space in which human actors can be observed: it is a medium through which a wide variety of statements are produced” (p. 234). I find this approach more productive, as it takes online forums as sites of conceptual and corporeal formation rather than as mere spaces for conversation between previously formed bodies and selves. Bassett and O’Riordan (2002) acknowledge that the human subjects model is appropriate in some contexts, but they are concerned that the dominance of this approach leads to a failure to engage with the “significant textuality of Internet media” (p. 234). My analysis attempts to address their concern and provide more balance to research approaches to the Internet through an exploration of this “significant textuality” and the nature of embodiment that is formed within it. Following Bassett and O’Riordan (2002), I attempt to apply “a hybrid model of relational ethics that incorporates text, space and bodies” (p. 247).

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For King (1996), there is a very real danger of psychologically harming “cyberspace participants” who operate on the Internet with a sense of “perceived privacy,” through research that considers Internet discourse to be available for public quoting and merely subject to copyright regulations. However, I have tried to balance considerations of harm, in all its multiplicity and diversity, with my research objectives. As such, I take into account the public and private nature of the selected online forums in terms of access, membership, and other relevant factors. In part due to the public nature of the forums, in the sense that they are (to a varying extent) accessible without membership, I did not gain informed consent for data collection from any of the online forums I analysed. Another significant reason for not gaining informed consent pertains to the fact that I felt that doing so would affect the discourse being studied. I am interested in the stories that we in our communities tell each other in the construction of our selves and our bodies, not the stories that we tell researchers; I am interested in the questions we ask, not the answers we give to a standard set of research questions. In reporting my research, I refer to the forums by name, not pseudonym. Nor do I use pseudonyms in place of user names, because I consider user names (and avatars) to be a significant part of the “constructed and performative aspects of Internet characters” (White, 2002, p. 261), and to erase them would be to invest in an “indexical relationship between an Internet character and the user’s body” (p. 258); user names are an important feature of the text, not a direct reference to the author. Ultimately, I sincerely believe in the broader political implications of the larger project from which this chapter is drawn, which is driven by the recognition of the harm done to trans bodies in the name of the natural. I give this real harm, experienced daily and often brutally, more weight in my ethical considerations than the potential harm to online authors, and I believe that this project has the potential to provide an intervention into that violence. Online Analysis

Transman or Trans Man In the terms trans man and transman the space or lack of it may seem insignificant to the uninitiated, but it takes on huge importance in the context of the FTM Forum and involves the relation between non-trans men13 and trans men. This becomes clear through the specific examples below, but, in general, some trans men (although this term is precisely what is at stake) assert their similarity to non-trans men in order to challenge the notion

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that they transitioned from female to male, instead asserting that they already were male. Here the redefinition of the relation between non-trans men and trans men is focused on the “difference” of transsexuality and on whether or not this difference is emphasized, which in turn determines how transition is understood. The debate around this issue produces the objects of trans man and transman. The former downplays difference from non-trans men and therefore challenges transsexuality as a form of transition, framing it as similar to “correction,” as in the gynecomastia medical discourse; the latter, transman, is more invested in emphasizing the distinction between trans and non-trans. (The line is not absolute between these identities, or in my characterization of them, but in general holds true in this context.) These alignments, as trans man or transman, were made especially evident in a thread started on 7 May 2010, which generated ninety-one comments and much heated debate.14 The user fruit_ing opens the conversation with the following: fruit_ing: Sometimes I feel like an alien among men raised as men.

What other guy spent 6 years bleeding out their genitals? Maybe part of it is due to my being a feminist.. but part of it seems like, due to my upbringing, and the reality of my body, I will never be able to see the world the way male raised males do. And..I’m okay with that, because hell if most of the differences I see aren’t ones that m.r.m.’s [male-raised males] come off worse by comparison. Just curious to hear some other thoughts.. and how y’all think of yourselves – transguys? Just plain ole guy? Why?15

Here, fruit_ing primarily marks the difference between non-trans men and “transguys” in “the reality” of his (female) body, reduced in this instance to menstruation (which is later acknowledged as a way to “sum up the differences in a compact way,” though not a “definite barometer”). Poster fruit_ ing seems to espouse a form of bodily essentialism, to the extent that he is accused by smilesweetirony of replicating the “womyn-born-womyn crap.” In the following interaction ftmny supports fruit_ing in the assertion of binary bodily difference, while prettyboicris vehemently disputes the grounding of difference in the body. Although prettyboicris acknowledges a bodily “condition,” he does not recognize it as necessarily the site of difference. ftmny: we have to accept that there are things about us.. that are always go-

ing to be different no amount of wishing is going to change how we were

The Negotiation of Mental Health Diagnoses in Online Communities  295 born.. surgery can do a good enough job with some things but the mere fact that surgery was necessary makes us different.. that doesn’t mean we can’t socialize and consider ourselves just another guy.. i do most of the time myself.. our history however does make us different.. prettyboicris: Please speak for yours. If YOU want to be different and view yourself as such because of a transition history then go right ahead. I see myself as different from other men because I am an individual with unique experience. The history of my body is not the difference. Also your statement “the mere fact surgery was necessary makes us different.” That is like telling a child born with some other medical condition (Blindness, genetic disorders and so on). It doesnt matter what treatment you get you will be different and accept it! If I wanted to “accept” having been born with a different physical body I wouldn’t have had surgery. I refused to accept the hand dealt to me so I made the necessary changes FOR ME! That has lead me to be just another guy PERIOD!

Not only does ftmny emphasize the history of the sexed body in marking the difference between non-trans men and transmen, he also highlights the necessity of surgical transition as a divergent factor. In contrast, prettyboicris downplays the transitional nature of transgender body modification by defining transsexuality as a “medical condition,” similar to others such as “blindness, genetic disorders, and so on” that may need “treatment” but which do not necessarily imply difference from other non-trans men. Taking this point further, sin_nombre describes medical conditions that may cause non-trans men to have bodies with female sexual characteristics, and transprose asserts that non-trans men with such bodies may seek treatment that would mirror treatment for the medical condition of transsexuality: sin_nombre: There are men and male-assigned individuals who’ve bled out

their genitalia, often due to CAH [congenital adrenal hyperplasia]. There are men and male-assigned individuals who’ve grown breasts without having taken exogenous estradiol. There are non-trans men who have larger than ‘normal’ hips and asses and there are non-trans men who were born with ovaries. I’m sure there are non-trans men who’ve dealt with all or most of the above because those conditions aren’t that uncommon. transprose: i don’t see my body as meaningfully different from males who were male-assigned-at-birth.

296  T. Garner i don’t think that there is any experience that i have had, or will have, that a cissexual male somewhere, at some point hasn’t had. HRT [hormone replacement therapy], chest reconstruction, genital surgery…

Of particular relevance to this analysis, in these comments the topic of non-trans men with gynecomastia and the surgical modification they may undergo is included in an attempt to undermine the assumed distance between the trans body and the non-trans body. The appeal to gynecomastic conditions is used as a way to assert the similarity of trans men and nontrans men and to challenge the idea of transition and, by implication, the mental health diagnosis that in part rests on it. In contrast, fruit_ing, moving beyond the body, also emphasizes upbringing as a significant factor that sets transmen apart from non-trans men, asking later in the thread, “What guys were raised as women for 18 years? Isn’t that bound to make a difference?” Poster algomuyraro agrees with fruit_ing on the basis of not knowing “how to play football, or tie a tie, or change a tire.” However, prettyboicris emphasizes that fruit_ing and algomuyraro essentialize “male raised males” by disavowing the extent to which cultural assumptions of race and class intersect with what it means to be “manly.” In response to algomuyraro, prettyboicris says: prettyboicris: I think some of these conversations focus more on American

culture and does not take into consideration other cultures. I guess I have a different view on this stuff because I have a specific cultural I was raise in and also have different cultures that I interact with that do not subscribe to any of the things mentioned. In my culture Football = Soccer not pigskin! Also Men are supposed to know how to cook, clean, sew, iron, take care of the basic needs of children and do these regularly. Tying a tie is not necessarily a skill to be mastered depending on what type of work you do and where you work.

Here prettyboicris challenges the singular notion of man and makes visible the assumption of middle-class, American whiteness that grounds these ideas of “normal” sex and gender. Also challenging fruit_ing’s argument, doctorrobotnik rejects the notion that he had a “female childhood” that marks him as distinct from nontrans men: doctorrobotnik: i think the actual impact that for those of us who were “raised

as female” can be overrated. speaking for myself, i tend to fit the “typical

The Negotiation of Mental Health Diagnoses in Online Communities  297 trans narrative.” i knew i was a boy from a very young age and although i didn’t know what trans was, or if it was even possible to transition until i was WAY older, i always had an internal sense of being male. because of this, though i was raised/socialized female, a lot of it didn’t “stick.” when i was given messages by family or society that “girls should do this/be this/ whatever,” part of me always knew that i wasnt a girl and those messages weren’t for me. so i may have “played the role” but never truly internalized much of the stuff directed at me. similarly, general social messages and ideas directed at guys, though not me, were things i would pick up on and pay attention to. i’m certainly not claiming to have been socialized as male, but i dont feel like i had a “female childhood” either. i mean, most little girls don’t grow up knowing that they’re really boys, but happen to be in the wrong body. i guess i would say i had a “trans childhood,” as always knowing i was male gave me a different perspective on messages i was being given. does that make me different than most non trans guys? sure. did i miss out on learning a lot of things that most guys do? sure. but again, there is no “typical” male childhood and a lot of guys are raised in different ways, and learn certain things and not others. i guess that while my history is certainly different, it doesnt mean i have no basis to relate to non trans guys and i did go through some of the same stuff, including male puberty, deciding what kind of man i wanted to be, etc. so while i admit that i am different, i dont think the way i was raised deserves as much weight as many people want to give to it.

The denial of a female childhood is another way of downplaying transsexuality as a form of transition. In this way, continuity is maintained through the surgical, hormonal, and social modifications, as these are located within an uninterrupted male identity, from boy to man (which is often attributed to male-oriented neurobiology). As such, chest surgery is not understood as part of the transition from woman to man because there is no sense of being “a girl” in the first place; instead, chest surgery becomes a confirmation of self through the alignment of sex characteristics. While doctorrobotnik does not deny his difference, he also emphasizes the variety of ways in which non-trans men are raised. In other similar arguments, difference, if any, is associated with uniqueness – the fact that everyone is different from one another. For users like mercurychaos, below, it is a claim of difference among both non-trans men and trans men, not difference between those groups. In contrast to fruit_ing’s argument, from this perspective the declaration of difference is a technique of claiming the sameness of trans men and non-trans men; as prettyboicris

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says, “we are different in the sense that all men are different.” As such, there is no separate category of “transguys,” because there is no definitive way to mark a distinction between non-trans men and trans men. mercurychaos: I’m a trans man – the “trans” part is an adjective, which I

could replace with a lot of other adjectives if I wanted to. I feel “just like any other man” in the sense that I am male. Everything else will inevitably vary, and this would still be true even if I were not trans.

The constitution of trans men as “just men who happened to transition” (prettyboicris) within these debates through the various techniques described operates to downplay transsexuality as transition in order to undermine the presupposed distance between the “natural” male body of non-trans men and the “constructed” body of trans men; it is, in effect, a way of saying “we are all equally (un)natural.” I give the final word from FTM Forum to varanus, one of the moderators and a well-respected member of the FTM Forum community, because he sums it up so well. varanus: Obviously my history affects my present, as does anyone’s. But you

know, men of trans experience aren’t the only ones who’ve had alienated childhoods and adolescences (those of us who did, of course). We’re not the only group of men who felt incompetent or like we missed something. We’re not even the only men who have secrets (those of us who are stealth) or non-normative genitals that need surgical correction (those of us who do).

In contrast to the construction within medical discourse, transsexuality does not define these men. Within medical discourse the mental health diagnosis of gender dysphoria, which rests on an incongruence of mind and body, is applied to the whole; the “transsexual patient” effectively becomes the disorder. Or, in Foucault’s terms, the transsexual is a species, entirely distinct from “normal” men and women. In this medical formation the FTM pre-surgical body is rendered absolutely female, and the notion of transsexual transition is always emphasized and remains the foundation of the literature, despite the fact that the transition is never considered to be complete. Further, within medical discourse the disorder of transsexuality is situated in the mind, while within online discourse the difference is located in parts of the body that can simply be corrected. These online narratives resist the medical formations and assert the FTM as simply man, not through a denial of difference but through an assertion of the difference

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of all, including notably the difference of a group of men who have breasts but are still considered men – those with gynecomastia.

The Suffering of Gynecomastia In contrast to the medical understanding of gynecomastia surgery as merely correction or restoration, as outlined above in the section on binary sex, gynecomastia surgery is reconfigured within gynecomastia.org as a lifechanging transition. Members of the online community describe being “born again” and “becoming whole.” While members of this community recognize that the surgery provides a significant physical change, they emphasize the mental transformation that it brings, to the extent that the transition is largely considered to constitute a shift from mental illness (depression, withdrawal, anxiety, lack of confidence, shame) to mental health (happiness, assertiveness, confidence). In part, members stress the mental anguish because insurance coverage for the procedure may be provided on the indication of pain and on the evidence that surgery is necessary to alleviate that pain. However, the mental pain is also very real, deep, and long lasting, and this suffering is largely taken to be the foundation of the community. The psychological stress of gynecomastia is especially evident in the thread of “What is your worst gynecomastia memory:’)[sic]” – a conversation that clearly resonates with the community, given that it began in September 2008 and continues to grow, reaching 307 comments seven years later, a significant number for a forum in which most threads are fewer than ten comments long. In this thread non-trans16 men with gynecomastia echo each other’s stories of a lifetime spent unable to hug freely, to run or swim without inhibition, to have sex without shame, and much more, particularly in relation to restriction of movement in space and limitation of personal growth. Poster ellington7 shares his story in the following excerpt: ellington7: The worst experience I’ve had with gyne can’t be nailed down

to a specific moment, but it was the everyday struggle of trying to hide it from everyone. I’d feel petrivide just walking down the street without a coat on. I’d worry about certain wind gust hitting my chest the wrong way, or being around a cute girl I was interested in, sparking a great conversation with her, getting to a point where it was obvious that we had a huge connection, only to know that I’d have to end the relationship once it started to get intiment, due to the possibility of having to be naked around her. I couldn’t go anywere without heavy shirts or coats in warm or cold

300  T. Garner weather, and had to deal with the mental agony of having to explain to people why I wouldn’t take them off. Or knowing that I was a alright looking dude, but because I couldn’t be myself that people would feel wierd around me due to the vibe I was sending out.17

ellington7 locates the suffering of gynecomastia not in the physical condition itself but in the “everyday struggle” of living with it. The weight of bodily discomfort is not limited to those moments in which the breasts are made visible through the hurtful words or actions of others, though those situations are multiple; rather, the shame of gynecomastia is so debilitating because it remains constant. Although there is harassment from others that highlights the policing and regulation of sexed and gendered bodies within social space, the constant suffering is largely due to the breasts becoming the object of self-surveillance, the most powerful technique of normalization. As headheldhigh01, a regular and well-respected poster, says, “i was thinking sometimes it’s not just the big nasty stories, though they’re the worst and we all have them, sometimes it’s death by a thousand paper cuts too.” In contrast to the medical classification of gynecomastia, which focuses on the physical size of the breasts, within this online forum the severity of gynecomastia is measured more in relation to the level of suffering. Despite the frequent appeals to “rate my gynecomastia” based on user photos, members agree with headheldhigh01, who declares in his signature, “If it screws up your life the same, is there really any such thing as ‘mild’ gyne?” Although many of the worst gynecomastia memories cited by members involve situations in which they had to reveal their bodies, such as in locker rooms or swimming class, Wedvilla and others reiterate the extent to which gynecomastia affects their whole life. Wedvilla: I’d say that I’ve underachieved significantly in my life, always

tantalisingly close to “normal” things like wife and family and career, but they remained elusive, lost in the fug of depression and misery and daily compensation / hiding strategies G necessitates. I think we all learn to strategise our G from an early age, but what I only realised not so long ago was that it was this daily grind of misery and strategising that had stunted me, my life was the bird to its cage, so to speak. The more I thought about it, I realised / remembered that my life, and particularly my young 10/11 year old life onwards, had contained countless little incidences that cumulatively caused my adult dysfuntionality…

The Negotiation of Mental Health Diagnoses in Online Communities  301 I’m finally facing up to it and getting it sorted next month, but the one thing I’d like to say to any youngsters reading this and these pages, is whatever you do don’t waste your twenties and thirties by not facing up to it, do whatever you can as soon as possible to get the cash together, and get it sorted and give yourself a chance of a fulfilling life.

Wedvilla was forty-two at the time of writing and was about to have chest surgery, which he imagines as a technology through which he will transition from “dysfuntionality [sic]” to fulfilment, reclaiming the life lost to gynecomastia for all those years through the achievement of those “‘normal’ things like wife and family and career.” On gynecomastia.org it becomes clear that gynecomastia surgery not only removes the glandular breast tissue but also, more significantly, the stress and anxiety associated with that tissue; the joke often cited by members is that it is a “weight off your chest,” in reference to the dual action of surgery in addressing the physical condition and the “mental scars” (steveo40) caused by it. Drawing on Jessica Cadwallader’s study “Suffering Difference: Normali­ sation and Power” (2007), in which suffering is taken as an object of analysis and a technique of power, not merely a natural expression of bodily injury or disorder, we can view the discursive operation of suffering on gynecomastia.org as a central normalization technique in the production of the “natural” male body. In distancing the gynecomastic body from the natural male body, the online expression of suffering asserts the necessity of surgical modification, not only to “correct” the body but, more significantly, to restore mental health. While I do not discount the level of suffering, or unsympathetically advocate living with it in the struggle against ideas of the normal, one elides the political nature of the experience of suffering by taking suffering to be a natural and neutral response to the biological “mishap” of gynecomastia. Drawing on Foucault’s notion of “biopower,” which refers to a culturally and historically contingent form of power that operates through knowledge formations of the body and population, Cadwallader (2007) emphasizes that suffering is more appropriately understood as an “anatamo-political technique of power that plays a critical role in biopower’s normalisation of both the individual and species body” (p. 389). Put another way, we must keep in mind the larger role that suffering plays in the normalization of sex and gender within society. However, just because the nature of bodily discomfort is to a great extent contingent on social, cultural, and economic conditions does not mean that it is a weight anyone should have to bear in order to change those conditions. This argument was used by second-wave feminist Janice Raymond against transsexuals in

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The Transsexual Empire: The Making of the She-Male (1994), and it is not one I want to repeat. However, along with Cadwallader, I do hope that the deconstruction of suffering may provide a space in which “the normal has been so thoroughly placed in question that difference may be able to be difference rather than deviance” (2007, p. 392). This is expressed in the FTM Forum, where the online discourse challenges the perceived distinctiveness of trans suffering and the demarcation of deviance, and instead asserts difference as normal.

Becoming a Man Much of the suffering of gynecomastia is caused by the fact that breasts are marked as female. Within the contemporary Western social imaginary, which, as mentioned earlier, figures male and female as “stable, incommensurable, opposite sexes” grounded in “sharp corporeal distinctions” (Laqueur, 1990, pp. 5–6), the appearance of breasts on a body previously understood to be male threatens both body and self. This perceived divergence is at the heart of the mental anguish experienced by men with gynecomastia and the reason that horror is generally considered the appropriate response to the presence of breasts. On the thread referenced previously, the comments and taunts aimed at men with gynecomastia constantly assert the femaleness of the breasts. One girl told EJ1990 he had “baggage like a girl,” while another said to impervious, “Your boobs are bigger than mine.” By extension, the femaleness of the body itself is asserted, as kevinrex’s narrative demonstrates: kevinrex: as of late my worst is probably when i was talking to one of my

female co workers. we got into a conversation about pregnancy. she told me i should never get pregnant because it will make my boobs get bigger. some of my coworkers who were eavesdropping laughed.

The appeal to pregnancy here highlights the extent to which gynecomastia “females” the body. As such, gynecomastia is represented as a barrier to the achievement of manhood, which within gynecomastia.org is associated primarily with success with the “opposite” sex and in sports. In relation to the “opposite” sex, success is often defined as sexual intercourse, with many members blaming their virginity on gynecomastia, and those who have engaged in sexual relations emphasizing the extreme self-consciousness that makes the experience uncomfortable. Poster mthatch1 writes in the thread referenced above, “During sex, I make every effort to lie flat and avoid being

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seen,” a description that shows that, although he has technically engaged in sex, manhood is not achieved through it because he is unable to take up the role stereotypically associated with maleness within sexual intercourse, that of being in a position of dominance in terms of both being physically on “top” and leading the sexual interaction. However, success is not only about intercourse. It is also identified with a level of intimacy that fosters love, which to some extent undermines the masculinized narrative of an absolute obsession with sex above all else. The same story about losing a great love resurfaces time and time again on gynecomastia.org, particularly as a “worst gynecomastia memory” in the thread under consideration. Poster gyne-be-gone’s rendition follows: gyne-be-gone: Having gynecomastia also destroyed my relationship with

the one and only girl I have ever really loved. We had dated for once as sophmores in high school but it wasn’t very serious. Then as juniors we became really good friends again and decided to date again. It became very serious but I was terrified to have sex with her because I didn’t want to take my shirt off. I always was thinking of reasons not to have sex even though I really REALLY wanted to! Because of this she thought I was a big fat pussy who “wasn’t ready” and it just killed me inside. it was a lose-lose situation. She eventually dumped me, and this was a major reason why. A later found out she was cheating on me with another “friend” of mine since I was to afraid to have sex with her I fucking hate gyne, it ruined my teenage years. I finally got the surgery done, I”m 29 but its to late, that girl is gone forever along with all the great care free teen age years that I missed because of hiding my chest and worrying about my appearance.

For many participants on gynecomastia.org the presence of breasts undermines heterosexual masculinity, because heterosexuality is perceived as being grounded in the bodily difference between male and female. In their comments the gynecomastic body is represented as unable to achieve heterosexual masculinity because it is situated in such close proximity to the female body. In a description by helloHELLO, a girl felt his chest and said, “Oh whats that...looks like we can get bras together”; here, the assertion of bodily similarity derailed sexual intimacy. In general, the breasts are an “obstacle,” a physical barrier that prevents men from entering into sexual relations with women, and, within this understanding, gynecomastia surgery becomes necessary in order to accomplish heterosexuality. The achievement of heterosexuality (as well as sports success) is identified as a significant rite of passage of the teenage and early-adult years. As such, online users of

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the forum put much emphasis on undergoing surgery as early as possible. Many of the members on gynecomastia.org appear to be young,18 and the overwhelming advice from older members (see Wedvilla’s comment cited earlier), and even from mothers participating in the forum, is to act fast in addressing the condition of gynecomastia through surgical modification. In direct contrast to both the medical literature on FTM chest surgery, in which regret is firmly associated with the post-surgical body, and the medical discourse on gynecomastia surgery, where regret does not feature at all, the regret expressed on gynecomastia.org is aligned with the pre-surgical body – the body with breasts. In the former, for example, Bowman and Goldberg (2006) precede their descriptions of transsexual surgical procedures with a discussion of regret, warning that “primary care providers are often concerned that their transgender patients will experience regret following SRS [sex reassignment surgery]” (pp. 4–5). The fact that regret is never considered in relation to the pre-surgical body highlights that regret is not merely an object; rather, it operates in ascribing harm to the surgical procedures that transsexual individuals may undergo. Its association with the post-surgical body only fails to acknowledge the harm that may be caused by not going through this process.19 In the medical literature, the focus remains on bodies unable to go back, and excludes the consideration of bodies not able to move forward; meanwhile, at gynecomastia.org the opposite is the case, with contributors emphasizing their inability to move forward and the regret that goes along with that. The notion of regret is decidedly absent from the medical discourse on gynecomastia surgery; regret is just something that does not cross anyone’s mind – there are clearly no “concerned physicians” here. This absence highlights the distinctions between the ways in which sex and gender are discursively figured in each medical domain. Gynecomastia surgery is merely thought to “restore” the male body to its natural state; the procedure is naturalized to such an extent that it allows no space for the consideration of harm or regret. Not only is it taken for granted that there is no regret associated with the post-surgical body, but posing the question of regret makes no sense in this context because of the distance maintained between the natural sexed body and the notion of regret. The absence of the association of regret with the post-surgical body is one of the devices through which the post-surgical body is characterized as natural, and the male body is maintained as one without breasts. Within gynecomastia.org the representation of manhood as the achievement of heterosexuality, although the “natural” male body is still considered a necessary ground, supports a social constructivist approach to sex

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and gender. It would appear that the experience of gynecomastia provides for an understanding of the extent to which, to quote Simone de Beauvoir (1993), “one is not born, but rather becomes” a man. Within the online forum, chest surgery is rarely taken as a threat to the natural; rather, it is considered necessary in the realization of the natural male body. However, surgical modification is only the beginning of becoming a man through providing the bodily grounds for achieving heterosexuality and physical prowess, which then makes the man. Thus, within this context, chest surgery is imagined as a significant part of the transition to becoming a man. Conclusion The overlaps within these forums in relation to lived experience are striking. In particular, both FTMs and men with gynecomastia share the suffering of being in the “wrong body.” However, the response to this suffering by those experiencing it is different, due in part to the ways in which the two “conditions” are medicalized. Transsexualism is pathologized, and so FTMs declare their “normalcy”; gynecomastia is described as benign, so men with breasts pathologize themselves. To a great extent FTMs and men with gynecomastia achieve this positioning by situating themselves as the other group. Both groups refer to themselves as men with a “medical condition,” but in relation to FTMs this “medical condition” is imagined to be gynecomastia, and in relation to gynecomastia it echoes the “disorder” of transsexualism. This alignment generally occurs indirectly, but occasionally explicitly as demonstrated in the following excerpts, the first from the FTM Forum (also quoted earlier), and the second from gynecomastia.org: sin_nombre: There are men and male-assigned individuals who’ve grown

breasts without having taken exogenous estradiol. There are non-trans men who have larger than “normal” hips and asses and there are nontrans men who were born with ovaries. I’m sure there are non-trans men who’ve dealt with all or most of the above because those conditions aren’t that uncommon. snowstorm: At the end of the day, looking at myself in the mirror, I just felt so bummed out about my body. I compare it almost to a transgender person feeling uncomfortable in the body they were living in. I was a man yet had these features that made me feel so unmanly. Finally, after years of dissociating myself from my body and feeling crappy about myself, I finally contacted some plastic surgeons…I just wanted to look like an normal guy with a flat chest. Simple.20

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Poster sin_nombre associates FTMs with men with gynecomastia (and other “medical conditions”) in an attempt to undermine the presupposed distance between the trans and non-trans body. From the other side, snowstorm associates men with gynecomastia with transgender folks, highlighting the experience of intense discomfort, to the extent of disassociation, of living in the body of gynecomastia. As well as aligning themselves with one another, these two groups appropriate each other’s clinical narrative. Some of the discursive techniques within gynecomastia.org echo the medical discourse, which does acknowledge the psychological discomfort of gynecomastia and the subsequent psychological satisfaction gained through surgical modification, as well as the association of manhood with sport and heterosexuality. However, the significant difference is that within the medical discourse gynecomastia is limited to a part of the body, and within the online community discourse gynecomastia is clearly experienced as a “disease” that undermines the whole of the body. Thus, within the medical discourse gynecomastia surgery is simply considered a removal of breast tissue, while on gynecomastia.org it is reconceptualized as a significant transition. Although men with gynecomastia have not become a “species” within the medical discourse, they are at least to some extent asserting themselves as one within online space and forming a community on the basis of the bodily difference of being “gynecomasts.” In part, this naming is an attempt to access coverage for surgical modification, a way to assert its medical necessity on the basis of a threatening “medical condition,” which on gynecomastia.org is largely defined by suffering in the absence of pathological tissue. This turn towards medicalization highlights the extent to which participants recognize that funding is contingent on mental health diagnoses. The emphasis on gynecomastic difference is also due to the fact that the gynecomast community has a shorter history than that of the transgender community. The transgender community has moved beyond this classic narrative of the assertion of bodily difference or identity. However, this assertion is largely due to the intensity with which men with gynecomastia feel their bodily difference and their mental pain. In contrast, FTMs challenge the medical framing of “transsexual” as species and the pathologization of their psychological discomfort, declaring themselves to be simply men with breasts who need surgery. Within gynecomastia.org the necessity of surgery is rarely questioned. There is an Acceptance forum within the site in which members accept their breasts and do not assert the necessity of surgery, but this forum exists in tension to the online community, which defines itself by the suffering

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caused by gynecomastia. Thus, within this online discourse the binary of the male and female body is maintained (where the former is defined without breasts and the latter with breasts), as is the alignment between sex and gender identity. In FTM Forum there is more space for challenge to this dominant biomedical paradigm, as evidenced in the description of the forum quoted earlier, which allows for the incongruence between assigned sex and gender identity to be “incorrect or incomplete”; the term incorrect implies opposite – either right or wrong – while incomplete implies a space beyond the binary of sex and gender and their alignment. However, in both online communities the man with breasts is rarely identified as a self-identity, or the breasted male body as a viable embodiment. Breasts remain associated absolutely with the female body, and, just as in the medical discourse, norms of sex and gender are largely maintained. Narratives of lived experience are often marginalized within the medical domain and given little authoritative power. Analysing these online communities has the potential to provide grounds for meaningful reflection on and change to current mental health policy and practice. The number of possibilities for change include shifting the mental health framework from diagnosis to counsel and health care provision, including body modification, independent of diagnosis; inclusion of transsexuality and gynecomastia within this mental health domain; consideration of the potential regret involved in not transitioning, for FTMs, and of the potential regret involved in transitioning, for gynecomasts; consideration of acceptance in relation to the breasted body; challenges to norms of sex, gender, and sexuality through future medical research and practice, and avoidance of cisgenderism, that is, the assumption that normal and natural embodiment is grounded in alignment between sex and gender binaries; engagement in advocacy on these issues; and, finally, at the foundation of all of these, promotion of the idea that “difference may be able to be difference rather than deviance” (Cadwallader, 2007, p. 392).

NOTES 1 Cis (or cis-sex or cisgender) refers to the alignment of bodily sex and gender identity. The term has been taken up by transgender scholars, activists, and community members in response to the marginalization associated with using trans man, versus simply unmarked man. 2 This is a significant shift, which I explore in “Chest Surgeries of a Different ‘Nature’” (2014). Here I will note only that in response to the calls by trans

308  T. Garner activists and scholars for more recognition of the non-binary nature of sex and gender, the language of the latest DSM attempts to avoid the notion of “opposite sex.” 3 “Internet Use Over Time,” Pew Research Internet Project, 14 February 2014, http://www.pewinternet.org/data-trend/internet-use/internet-use-over-time 4 S. Fox and M. Duggan, “Health Online 2013,” Pew Research Internet Project, 15 January 2013, http://www.pewinternet.org/2013/01/15/health-online-2013 5 K. Purcell, “Search and Email Still Top the List of Most Popular Online Activities,” Pew Research Internet Project, 9 August 2011, http://www .pewinternet.org/2011/08/09/search-and-email-still-top-the-list-of-most -popular-online-activities 6 See note 5 above. 7 “Standards of Care for the Health of Transsexual, Transgender, and Gender Non-conforming People,” World Professional Association for Transgender Health, 10 January 2013, https://s3.amazonaws.com/amo_hub_content /Association140/files/Standards%20of%20Care%20V7%20-%202011%20 WPATH%20(2)(1).pdf 8 “Home,” World Professional Association for Transgender Health, 10 January 2013, http://www.wpath.org 9 http://ftm.livejournal.com 10 https://www.gynecomastia.org 11 “Community Profile,” FTM Forum, 29 July 2013, http://ftm.livejournal.com /profile 12 The nature of online groups changes over time, so these figures reflect the membership as of 4 September 2015. 13 I use the term non-trans men here instead of cismen to acknowledge the problems that are articulated in relation to the latter term in other threads of the FTM Forum, including the lack of access to the discourse surrounding the term cis. I consider this issue in more detail in the larger project from which this piece is drawn. 14 “A recent argument with someone who *was,*” 7 May 2010, FTM Forum, retrieved on 10 June 2010 from http://community.livejournal.com/ftm /6175390.html. This thread has since been deleted. 15 In order to represent the text as it appears on the forums under consideration, I make no attempt to correct the spelling and grammar of the original. 16 In reference to the above discussion I continue to include this modifier in order to undermine the structural privilege that is generally accorded nontrans men by simply referring to them as men while marking trans men as trans men.

The Negotiation of Mental Health Diagnoses in Online Communities  309 17 “What is your worst gynecomastia memory:’),” 4 September 2008, Your Stories, gynecomastia.org. Retrieved on 25 June 2010, https://www.gynecomastia.org /smf/index.php?topic=15539.0/ 18 This is borne out by the 2009 Cosmetic Surgery National Data Bank Statistics, compiled by the American Society for Aesthetic Plastic Surgeons, which reveals that the majority of gynecomastia procedures are undergone by nineteen- to thirty-four-year-olds (58 per cent), and a significant percentage are carried out on those who are eighteen and under (9.6 per cent), a far larger figure than for most other cosmetic procedures in that age group, surpassed only by surgery on the ear or nose (p. 10). 19 Julia Serano, in a post entitled “transsexual regrets” on her personal blog, Whipping Girl: The Blog with the Trans Feminine Touch!, acknowledges this in the following reconfiguration of regret: “While taking hormones or having surgery is an irreversible, life-altering change, one that is sometimes followed by regrets, so too is puberty when you’re a young trans person,” http:// juliaserano.livejournal.com/2168.html 20 “24-year-old guy’s Surgery Experience,” 11 July 2010. User Diaries, gynecomastia.org. Retrieved on 25 September 2010, http://www.gynecomastia .org/smf/index.php?topic=21079 REFERENCES American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.) (DSM-4). Washington, DC: Author. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.) (DSM-5). Washington, DC: Author. Bassett, E.H., & O’Riordan, K. (2002). Ethics of internet research: Contesting the human subjects research model. Ethics and Information Technology, 4(3), 233–47. http://dx.doi.org/10.1023/A:1021319125207 Beauvoir, S. de. (1993). The second sex. H.M. Parshley (Ed.). New York: Alfred A. Knopf. Bowman, C., & Goldberg, J. (2006). Care of the patient undergoing sex reassignment surgery (SRS). Vancouver, BC: Vancouver Coastal Health Transgender Health Program, Transcend Transgender Support & Education Society, Canadian Rainbow Health Coalition. Cadwallader, J. (2007). Suffering difference: Normalisation and power. Social Semiotics, 17(3), 375–94. http://dx.doi.org/10.1080/10350330701448702 Coleman, E., Bockting, W., Botzer, M., Cohen-Kettenis, P., DeCuypere, G., & Feldman, J., … Zucker, K. (2011). Standards of care for the health of

310  T. Garner transsexual, transgender, and gender-nonconforming people (7th ed.). International Journal of Transgenderism, 13, 165–232. Currah, P., & Moore, L.J. (2009). “We won’t know who you are”: Contesting sex designations in New York City birth certificates. Hypatia: A Journal of Feminist Philosophy, 24(3), 113–35. http://dx.doi.org/10.1111/j.1527-2001.2009.01048.x Currah, P., & Spade, D. (2007). Introduction to Special Issue: The state we’re in; Locations of coercion and resistance in trans policy, part 1. Sexuality Research and Social Policy: Journal of NSRC, 4(4), 1–6. http://dx.doi.org/10.1525 /srsp.2007.4.4.1 Fausto-Sterling, A. (1992). Myths of gender: Biological theories about women and men (2nd ed.). New York: BasicBooks. Fausto-Sterling, A. (2000). Sexing the body: Gender politics and the construction of sexuality. New York: BasicBooks. Foucault, M. (1970). The archaeology of knowledge and the discourse on language (A.M. Sheridan Smith, Trans.). New York: Pantheon. Frankel, M.S., & Siang, S. (1999). Ethical and legal aspects of human subjects research on the Internet: A report of a workshop June 10–11, 1999. Retrieved from https://www.aaas.org/sites/default/files/migrate/uploads/report2.pdf Garner, T. (2014). Chest surgeries of a different “nature.” Annual Review of Critical Psychology, 11: Gender and Sexuality, 337–56. King, S. (1996). Researching Internet communities: Proposed ethical guidelines for the reporting of results. Information Society, 12(2), 119–28. http://dx.doi .org/10.1080/713856145 Laqueur, T. (1990). Making sex: Body and gender from the Greeks to Freud. Cambridge, MA: Harvard University Press. Letterman, G., & Schurter, M. (1969, May). The surgical correction of gynecomastia. American Surgeon, 35(5), 322–5. Medline:5782230 Oudshoorn, N. (1994). Beyond the natural body: An archaeology of sex hormones. London: Routledge. http://dx.doi.org/10.4324/9780203421529 Pew Internet. Internet Users Do on an Average Day. (2011). Retrieved from http://pewinternet.org/Trend-Data/Online-Activites-Total.aspx Raymond, J.G. (1994). The transsexual empire: The making of the she-male (2nd ed.). New York: Teachers College Press. Rheingold, H. (2000). The virtual community: Homesteading on the electronic frontier (2nd ed.). Cambridge, MA.: MIT Press. Shildrick, M. (1997). Leaky bodies and boundaries: Feminism, postmodernism, and (bio)ethics. London: Routledge. Spade, D. (2006). Mutilating gender. In S. Stryker & S. Whittle (Eds.), The transgender studies reader (pp. 315–32). New York: Routledge. Spade, D. (2008). Documenting gender. Hastings Law Journal, 59, 731–842.

The Negotiation of Mental Health Diagnoses in Online Communities  311 Sterne, J. (1999). Thinking the Internet: Cultural studies versus the millenium. In S. Jones (Ed.), Doing internet research: Critical issues and methods for examining the net. Thousand Oaks, CA: Sage Publications. http://dx.doi.org/10.4135 /9781452231471.n13 Stryker, S. (2006). My words to Victor Frankenstein above the village of Chamounix: Performing transgender rage. In S. Stryker & S. Whittle (Eds.), The transgender studies reader (pp. 244–56). New York: Routledge. Waskul, D., & Douglass, M. (1996). Considering the electronic participant: Some polemical observations on the ethics of on-line research. Information Society, 12(2), 129–40. http://dx.doi.org/10.1080/713856142 Webster, J.P. (1946). Mastectomy for gynecomastia through a semicircular intraareolar incision. Annals of Surgery, 124(3), 557–75. http://dx.doi.org/10.1097 /00000658-194609000-00011 White, M. (2002). Representations or people? Ethics and Information Technology, 4(3), 249–66.

11 “One in Five”: The Prevalence Problematic in Mental Illness Discourse ta n ya t i t c h ko s k y a n d k at i e au b r e c h t

1 in 5 Canadians will experience a mental illness in their lifetime. The remaining 4 will have a friend, family member or colleague who will.1

One in five will suffer a mental illness, they say; despite our fear we need to talk about this, they say; today we need to begin to raise awareness about the prevalence of mental illness, about how it is affecting millions of people and is one of the most pressing burdens in the workplaces, communities, homes, and schools in Canada and around the globe. To all of this, they say, we need to respond – or at least we need to respond better than we have been. So a discourse of the troubling presence of mental illness as a costly social problem to which the non-expert responds inadequately enters the lives of more and more people in Canada, the United States, and the rest of the world in general, and does so more and more often. This chapter focuses on representations of the prevalence of mental illness in the mainstream media, the primary way in which Western(ized) people are encouraged to consider what is troubling themselves and others.2 What images of people, problems, and adequate responses are entering the lives of those targeted by awareness campaigns through the ubiquitous mental illness discourse on prevalence? Who is targeted, and what role do awareness campaigns play in shaping the form of social justice that appears within the context of mental illness?3 What consequences do conceptions of prevalence hold for how people who experience mental anguish – and other differences in consciousness – make sense of themselves, others, and their relationships, especially in times of distress? What, in short, is prevalence discourse doing? First of all, though, a few words on prevalence. The term prevalence is typically used to indicate the measurable presence of an entity of concern. The prevalence of such an entity is typically

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bounded by a time frame. For example, in this week, this year, or over a lifetime there is an amount, a rate, or a quantity of something of specific interest to and within a population. Awareness campaigns of mental health and illness typically use prevalence in this way: “In any given year, one in five people in Canada experiences a mental health problem or illness, with a cost to the economy of well in excess of $50 billion. Only one in three people who experience a mental health problem or illness – and as few as one in four children or youth – report that they have sought and received services and treatment. Of the 4,000 Canadians who die every year as a result of suicide, most were confronting a mental health problem or illness” (MHCC, 2013c).4 Prevalence discourse typically says that illness, suffering, and even death are prevalent, whereas seeking and receiving treatment is not. This sense of prevalence is also used in awareness campaigns involving crime, gambling, drug use, illiteracy, violence, bullying, and smoking.5 Although prevalence is a primary way to describe and encounter a wide array of social problems, this chapter is most concerned with the social, political, and pedagogical significance of the pervasive use of prevalence discourse within mental health and illness awareness campaigns in Canada and around the globe. In order to draw attention to the critical role that notions of prevalence play in shaping encounters with mental illness as an issue of social justice, we examine the regular and oft-repeated articulation of mental illness prevalence in Canada as it is accomplished within educational material and public awareness or anti-stigma campaigns. We focus on how prevalence discourse frames the meaning of people and problems as opportunities to reaffirm the value of normalcy, while also making mental illness appear as a primary form of the “global burden of disease” (WHO, 2001). Our analysis focuses on publically available depictions of mental illness in which the sense of prevalence is produced, authorized, and circulated by global organizations, national governments, agencies, and corporations. Through this analysis we demonstrate that public articulations of the omnipresence of mental illness have the pedagogical aim of teaching friends, family members, colleagues, and other non-experts that “we,” that is, the non-expert, are responding poorly to this problem. We call this takenfor-granted link between the prevalence of mental health issues and the inadequate response to them the “prevalence problematic.” It is the function and meaning of the prevalence problematic that this chapter aims to reveal, de-naturalize, and address. We do so also as a way to remind ourselves and others that it could be otherwise; there are many and various ways to describe mental health issues, potentiating different political consequences.6

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Our analysis, based in interpretive sociology and informed by cultural and disability studies, reveals the assumptions behind the constitution of the extraordinary normalcy of mental illness that is achieved via prevalence discourse. Our approach is situated in a body of work that critically examines the hegemony of Western professional disability knowledge (organized by what many refer to as the “psy-” sciences) in the contemporary processes of normalization and social control. Central to this examination is consideration of how psychiatric knowledge and practice, including public awareness programs, are employed as tactics of public governance and used to frame interpretations of difference and to authorize social processes of “in/exclusion” (Ware, 2004). This governance authorizes exploitative treatment on the basis of individuals being “included as excludable type[s]” (Titchkosky, 2007), which includes those who are regarded as mentally ill, maladjusted, or disordered. Thus, we address public depictions of the ubiquity and proximity of mental illness with a view to uncovering the way in which mental illness is put into play in the rationalization of social inequality. We do not argue that mental illness is a myth or a fact, and we do not debate the validity of the measures used to map mental illness as a key contributor to the global burden of disease (WHO, 2001). Instead, we explore unexamined assumptions about the meaning of prevalence as it operates within population-level interventions, and how these assumptions regulate the ways in which the consciousness of people is framed as problems. The Prevalence Problematic There are at least two intertwined interpretive moves within the prevalence problematic. First, unexamined relations to prevalence tend to treat it as an obvious sign of a need for intervention – to notice prevalence is to notice a problem. Second, public articulations of the omnipresence of mental illness typically connect the non-expert public to an issue as worrisome as the vast numbers of suffering people; namely, that we (friends, family members, and colleagues) are all responding poorly to this problem and thus contributing to the prevalence of mental illness. The consequence of this poor response is the reproduction of stigma, which presents a significant barrier to individuals acknowledging mental illness and accessing professional help. The commingling of prevalence as a taken-for-granted sign of the need for intervention, with the professional judgment that most everyday interventions are inadequate, represents two key, yet typical, moves that are accomplished within various mental health campaigns. We regard

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this specific intertwining of the presence of a problem, and inadequate response, as the prevalence problematic. Let us consider what other meanings are made through the prevalence problematic, which consistently depicts the ubiquity of mental illness as both a threat to an increasing number of people and a threat to which the non-expert fails to respond adequately. Consider this typical example: “Breaking the stigma of mental illness: Everyone knows someone who is affected, experts say, and we must educate ourselves to deal with it properly” (Winston, 2013). It seems reasonable enough to argue that dealing properly with mental illness entails breaking the stigma, because whatever else mental illness is, it is understood as unwanted and thus easily stigmatized. The phrase “everyone knows” suggests that mental illness can be known in a quantitative fashion. The assertion that stigma can be broken through education suggests that what everyone knows is that mental illness is something unwanted that obviously affects many people. Finally, there is the implication that mental illness is something that non-experts deal with inadequately. Thus, the prevalence problematic knots together great numbers of people within a single conception of mental illness, tied up with various forms of inadequate response by the non-expert. Still, what does it mean to move people from noting that there is mental distress, anguish, or difference, towards accepting the fact of the non-expert’s failure to respond adequately, while also assuring the non-expert of the availability of efficacious expert help? The prevalence problematic moves its non-expert target population to accept that the knowledge claim that “1 in 5 Canadians will …” is, in fact, sensible as a moral claim that aims to elicit more appropriate responses. The logic displayed in box 11.1 appears repeatedly throughout mental illness educational and awareness literature across Canada and elsewhere. In this literature many people are said to suffer a disorder, and these people are depicted as a cost to the economy, even though only “one in three” receives the needed help. Millions of people are suffering, at least according to Bland, Orn, and Newman’s 1988 statistical rendering of the one-infive configuration of mental illness in Canada, and millions more do not respond appropriately to this suffering. Indeed, the public are depicted as not even knowing the true extent of the problem or of the stigma faced by those who have mental health issues. Thus, the ubiquitous appearance of prevalence discourse symbolically serves as a question: “Did you know?” Central to anti-stigma campaigns is an interest in addressing and even normalizing what have hitherto been perceived as “undesired differences” (Goffman, 1963, p.  5). As Goffman has detailed, the “stigma processes­

316  Tanya Titchkosky and Katie Aubrecht Box 11.1. Normalcy and the nature of the many Did You Know? • “During their lifetime about one in ten people in Canada will experience an episode of major depressive disorder (the diagnosis given to those suffering from depression)” (MDAO, 2013). • “In any given year one in five people in Canada experiences a mental health problem or illness, with a cost to the economy of well in excess of $50 billion” (MHCC, 2013b). • “Only one in three people who experience a mental health problem or illness – and as few as one in four children or youth – report that they have sought and received services and treatment” (MHCC, 2013b). • “If you or a family member is experiencing a mental health issue, you are not alone. It’s troubling that only one in three people get the help they need” (Bell Canada, 2013). • “As many Canadians suffer from major depression as from other leading chronic conditions, including heart disease, diabetes or a thyroid condition, according to new data on mental health and well-being from the Canadian Community Health Survey” (CCHS, 2003). • “One in five adult Canadians (21.3 per cent) will suffer a mental disorder in their lives. This figure translates into 4.5 million people. Anxiety disorders and depression are the most common. Approximately 2.5 million Canadian adults or over 10% of the population 18 and older will have a depressive disorder” (Bland, Orn, & Newman, 1988). • “Of the 4,000 Canadians who die every year as a result of suicide, most were confronting a mental health problem or illness” (MHCC, 2013b).

seem to have a general social function – that of enlisting support for society among those who aren’t supported by it” (p.  138). Anti-stigma campaigns reframe the undesired difference that is assumed to reside in individuals with mental illness as a “desired difference” for expert medical help (Titchkosky & Michalko, 2009, p. 43). The differences of expert treatment regimens are differences that are held up as desirable through the prevalence problematic. That is, the acknowledgment of a significant number of people suffering an undesired problem requires more public acknowledgment. Through this wider public acceptance of the extent of the problem, as well as the acknowledgment that the non-expert does not know how to do the right thing in the face of mental difference or suffering,

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we (the non-experts) should come to desire the difference that professional help and treatment is assumed to offer. Once conceived as prevalent yet poorly addressed, the ascribed differences attributed to people who are labelled mentally ill become something about which we no longer have to wonder. Instead, mental illness becomes an occasion to display the power of normalcy to “make right.” That is, personal and public acceptance of the illness serves as an occasion on which many can perceive and reaffirm both the normal order of things, including the mind, and the best way to deal with those who depart from normalcy. In other words, the prevalence problematic in public educational material on mental health can be read as a mechanism to regulate social belonging. This regulation of social belonging moves its targets quickly away from questions concerning the quality of suffering or difference and towards, first, the sheer recognition of the great numbers of people who suffer and, second, a growing awareness of the inadequate response of non-experts and thence the unity of a solution – professional help. The “one” in the “one in five” is not the actual focus. Instead, the “one in five” ratio organizes perception of mental illness as a quantifiable problem. Mental illness is constructed as a sequence of events with a predictable ending. Individual responses to mental illness count, which demonstrates the potential of knowledge to change the courses of action in order to produce other, more desirable, yet no less predictable, endings. Through the “one in five” ratio, responses to mental differences are framed as part of the prevalence equation and thus as isolatable things that can be measured and deemed prevalent. Most people are not mentally ill (four in five). Articulations of prevalence (“one in ten,” “one in five,” “one in three,” “many Canadians,” “you or a family member,” “everyone knows someone who …”) normalize the “fact” of mental illness as a major problem – while simultaneously establishing that people with mental illness diagnoses are different from everyone else – and the subsequent “fact” that many others do not know how to respond appropriately. Thus, the prevalence problematic makes normal a problem’s prevalent presence while making more evident and less normal the quality of responses to the problem, especially because most people are not dealing with it adequately. How mental difference, illness, or anguish manifests outside of this prevalence problematic needs never make an appearance. More than merely accounting for the numbers of people who depart from health, public education efforts turn the identification of difference into an instrument of normalcy. According to the logic of the prevalence problematic, not only is it normal not to have a mental illness, but it is also

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commonplace for the normal, or, in Garland Thomson’s (1997) term, “the normate” (p. 8), to respond poorly to those who do. As stigma is depicted in these campaigns, it is an occasion to develop a new normal – that is, to teach others to respond well, instead of poorly, to mental health conditions that are taken as a given. Public sharing of medical knowledge, statistics, and health facts in the form of prevalence is supposed to jumpstart this new response. This project is also animated by what Conrad (2001) refers to as a “genetic optimism frame” (p. 230), which became dominant in news media in the mid-1980s. The frame suggests a genetic basis for mental disorders and locates the solution to the problem and the “problem people” through the identification of problem genes. In so far as the meaning of mental illness prevalence is established as a given, we can rapidly move past this phenomenon because we are moving on to the question of appropriate treatment or of better access to treatment as currently defined by Western medicine. Documenting prevalence represents one way of addressing suffering, albeit in a controlled fashion. Mental illness is fixed in time, space, and number. In 1988 in Canada the number of mentally ill people became fixed, became one in five (Bland, Orn, & Newman, 1988). Once the number has been made into a known quantifiable thing, the work of fixing and repairing potentially damaged relations can begin. The work involves turning away from the qualitative character of differences, in the interest of preserving a sense of unity for a solution; or the need for a solution trumps an exploration of self and Other in scenes of suffering. But what sort of unity is this? Is it unity grounded in social justice? The Utility and Unity of the Prevalence Problematic There is a paradoxical kind of unity in the utility of prevalence discourse. For example, prevalence discourse (“one in five”) can be read as an answer to a question that we already expect but have not yet asked: What is going on with her? What happened to him? What’s going on with me? Something strange, but what? We do not ask, because we may not have the time, the know-how, or the inclination. Perhaps we do not have the capacity, or we might think it is not our place. Perhaps we will do more harm than good; maybe we will add insult to injury; maybe such questioning will be stigmatizing. A leading premise of the repetitive publication of the prevalence problematic is that the non-expert lacks specific knowledge and skill – of this we are to be convinced. Indeed, the only certainty offered through the robust use of the prevalence problematic in educational materials is that the other four of the one in five do not know how to respond appropriately

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(even who is the one and who are the other four is uncertain). The very uncertainty of belonging unites us in a common need for professional assistance, as well as giving us a common way to conceptualize the problems and their solutions. The prevalence problematic allows mental health issues to be naturalized as a statistic, a “fact of life” about which experts have knowledge and nonexperts do not, though they should be taught (Aubrecht 2012b; Voronka, 2009). The appearance of prevalence even encourages non-experts to be united in their sense of concern about a disturbing difference, as well as in their and our response to it; moreover, the non-experts are told that we do little beyond stigmatizing an already difficult and disadvantageous condition. All non-experts, like the ones identified as having trouble, are coached to turn to experts for assistance. When one person appears different from the other four, these four are called upon to mind their relations, to stop stigmatizing others by regarding the problems of these others as medical conditions in need of medical assistance. Difference is framed as differentness and tends to appear as damage, which is understood as the effect of an untreated condition; thus, professional health measures are to be sought (Titchkosky & Aubrecht, 2015). Within this interpretive chain, the suggestion of expert assistance uniformly serves as a sign that stigmatization has stopped. Suggesting or seeking expert help is both expressed and governed as the most reasonable and productive response within the literature of mental illness prevalence. Consider this extreme but not atypical example. The World Health Organization asserts: “The point we are trying to make this year: for societal advancement, mental health services are essential. The lack of mental health services is not just negligent; in economic terms, it is irrational” (WHO, 2011, p. 3). A focus on prevalence makes it possible to manage this risk, to act rationally, suspend judgment, bracket emotion, and thus manage the uncertainty of whether we are contributing to the problem of suffering in our attempts to resolve it (Grech, 2011). The move from noting difference to charting its prevalence to diagnosing inappropriate stigmatizing responses to highlighting the need to seek appropriate expert assistance leaves everyone little room to consider whether this interpretive chain might actually produce what it aims to solve. Maybe it will be different in treatment, but on the path to treatment there is little room to consider the actual forms of interaction that have occurred in the face of a disturbed or disturbing sense of another person. The fact of mental illness, once established, makes any question as to what is actually going on into an either/or situation: you are either facing or producing stigma; you

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are either receiving or suggesting expert professional help (Smith, 1978). Even if you are not perceived, and do not experience yourself, as mentally ill, chances are that you know someone who is. We are united, then, in an exclusive focus on the assumed utility of expert assistance and united also in a shared desire for relief from uncertainty and ambivalence. Once mental illness is known as prevalent, social relations with it can be framed as technical problems that have ready-made solutions, and mental illness is made meaningful as an opportunity to show the many that the one knows what to say, where and when, in order to seek professional help; this is illustrated in box 11.2, which includes passages from the Bell Let’s Talk campaign and other websites: Box 11.2. Blueprints for Change Blueprints for Change “Talking about mental health is the first step in making a difference in the lives of all Canadians. Get the conversation started with our Bell Let’s Talk Toolkit that’s full of telling facts, compelling information, and simple tools from some leading health experts. Show your support for mental health and spread the word about Bell Let’s Talk Day 2013. You can download individual parts of the 2013 toolkit below, or download it all by clicking here” (Bell Canada, 2013). “Mental health issues are all too common, and seeking help to overcome them is a sign of courage and strength. Social, emotional and behavioural problems affect individuals from all walks of life, all income levels, and all ages. Services provided by mental health professionals are an integral part of one’s complete health care” (Clean Living Recovery, 2013). “Mental health concerns us all. Mother, father, neighbour, friend … And many people either don’t seek or can’t get the services and supports they need to recover a meaningful life” (MHCC, 2013b).

Through the prevalence problematic the public is encouraged to not only accept the enormity of the problem but also accept a single solution: seek expert help. Awareness campaigns invoke the need for strength and courage in seeking help. In the interest of preserving a sense of unity in the face of an extensive problem, this utilitarian recommendation acts as a “turning away” from qualitative engagement with differentness. Unity is forged by accepting, and even welcoming, an expert rendering of both the problem

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of mental illness and its solution. The solution: services and supports as currently developed within the Western medical industry. This solution, however, is also tied up with a united belief in an unquestioned divide between the help of the expert and the stigma of the layperson. Given the vastness of the medical and pharmacological industry, alongside the great numbers of people involved in the helping professions, such a divide can only be a myth. Prevalence discourse glosses any conversation about the potentially social and political character of the prevalence problematic and its routine use. A focus on prevalence protects us from having to have that conversation. To say “one in five …” moves one individual into a group of millions of others who are interpreted as a point for treatment, as mental health projects; the one is to be “protected, enclosed, folded-in” (McGuire, 2016, pp. 134–5). The prevalence problematic is part of a ready-made solution to the social and ethical fact that people suffer the suffering of others (Michalko, 2002, p. 103). The complex array of responses to another’s mental anguish, including offering assistance or suggesting that one seek expert assistance, constitutes, among other things, ways to address our suffering of the other’s suffering. Prevalence discourse keeps at bay what current Western treatment regimens also keep at bay (albeit implicitly) – namely, the need to engage what comes prior to rendering the number of individuals who will be identified as people with mental health problems in need of treatment. What comes prior is perception, that is, the recognition that someone’s troubles are troubling. Before a quantifiable problem (one in five) can appear, there is the quality of our interrelations; there is interactional group life tied to the sense that a person, perhaps our self, is disruptive to everyday group expectations. Simply put, the sense of a problem must precede the social capacity to enumerate those problems. This sense of a problem originates and situates people in the realms of daily life, even as its objectification as a condition of one or another allows us to sidestep this social fact. Focusing on prevalence enables the objectification of the relations to mental anguish and difference by more or less removing the subjects who did the noticing and by focusing the non-experts on how they represent either stigmatization or a bridge to expert help. The discourse of public health prevalence assumes that everyone is united in moving away from how we come to notice problems, away from how experts and non-experts alike are engaged in the identification of mental illness. Instead, a focus on prevalence moves people towards the call for professional treatment and the fact of mental illness being understood as the need for such treatment. For example, it

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would be a step backwards, from the point of view of prevalence, and perhaps a re-entry into stigma and blame, to consider that our relations between self and other are difficult to handle under neoliberal rule guided by profit motives, where one’s “work-ability” is routinely used as a measure of health. Similarly, it would be a step backwards to consider the relationship between corporate profit and its reiteration and the promotion of the prevalence problematic (Illich et al., 1977). The prevalence problematic encourages a move forward; all non-experts are addressed as lacking adequate professional knowledge, and some (the one in five) suffer this more intensely than do others (the four in five). Despite a focus on the self and the provision of information to support individuals in implementing professional regimes of self-help, any expression of self-reflexivity is noticeably absent from the literature. There is no mention of the historical emergence of the concept of prevalence as it developed within the context of psychiatry, or of the conditions of the contested ascendance of psychiatric epidemiology within authoritative public health perspectives (Lovell, 2014). Readers are left with a belief of mental illness as a problem condition, objectively given, with which individuals live, and a conception of prevalence as a condition of the problems that the professional application of medical science is believed to solve. These problems take the form of personal properties that are enumerated and now in need of non-stigmatizing recognition in the form of professional medical treatment. Further, through the terms and conditions of the prevalence problematic a peculiar notion of equity arises. Within this context equity becomes knowable as a measurable goal of timely access to treatment and services. Equity becomes future oriented and not oriented to the assumptions, practices, and routines that lie behind the recognition of people as needing expert help. Prevalence discourse acts to make sure that more people are included in the campaign’s purview at a time when austerity measures and notions of scarcity abound, and the inevitability of cutbacks to programs and services is also being regularly articulated. A right to necessary services, supports, and programs becomes a social justice issue, which is highlighted through the public use of the prevalence problematic. Prevalence discourse provides a language for the discursive production of the Other (the one in the five). But this Other, who has a right to help, is framed as already outside the normative order of the other four. This is the achievement of the “Other within” – a figure whose appearance can provoke new interpretations of the social and political significance of stigma in mental health educational materials.

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The Stigmatized Other Within Stigma appears as a primary target of concern in descriptions of prevalence. The term brings together a welter of beliefs and interactions that block or stop people from receiving the help they need. Stigma lies between health and illness, between the many and the one, and is a key difference between the expert and the layperson. Simultaneously, a focus on stigma prevents greater knowledge of the grounds of people’s suffering, even as it shifts our collective attention to the need for services and supports that are deemed difficult to access because of the effects of stigma. Along with being an umbrella term for anything that blocks diagnosis and support for appropriate medical treatment, stigma implies an activity, and the act of stigmatization is framed by the prevalence problematic as irrational. When professional diagnosis and expert help are framed as necessary and appropriate, that which blocks access is framed as irrational. Stigmatization is something that no rational person would willingly enact. The logic of the prevalence problematic makes stigma a primary target of concern by treating it as a source of social oppression and, as such, some “thing” that is itself in need of prevention and cure, rather than as a description of the normative order of everyday life and its basis in ableism.7 Ignoring the socially established sense of stigma permits its eradication without ever having to address the structural inequalities and interactional norms that organize perceptions of an “undesired differentness that we did not anticipate” (Goffman, 1963, p. 5). The many different beliefs and practices that are put under the label of stigma are now diagnosed and managed as if they can be removed by a single-minded focus on access to professional supports and medical services. The awareness and eradication of stigma becomes the solution to the problem of too many “ones,” and a means of anticipating the undesired differentness embodied in the “ones,” thus providing for the appearance of a new non-stigmatizing “we” (see also McGuire, 2010), a “we” who knows that expert help is needed (Aubrecht, 2012a). Prevalence discourse treats stigma as a social evil that can be prevented, avoided, or eliminated through coming to know that some people’s behaviours, actions, and thoughts are “in fact” symptoms – symptoms of mental illness – and thus a call for professional help. Such a reading requires the tricky personal task of bracketing the lay understanding that people’s behaviours, actions, and thoughts are embedded and responsive to each other within some version of a shared social reality. Hence the emergence of anti-stigma campaigns and public educational materials featuring national and international iconic figures, such as the

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popular Opening Minds campaign established in 2009 and organized by the Mental Health Commission of Canada. Its website claims that people do not seek help because they fear being labelled. The paradox is that, in order to seek help, one must first identify with a diagnostic category that is, for all intents and purposes, a label (La Monica & Chouinard, 2013). Even as anti-stigma campaigns appear to challenge labels, they rely on and reproduce the legitimacy of labelling and reinforce a natural distinction between those labelled as ill and those labelled as stigmatizers. Labels certified by the authority of medical expertise and supported by systems of credentials are deemed legitimate and necessary to the survival of “some people” (one in five). Consider, for example, the following statement: “Ultimately, the goal of Opening Minds is to cultivate an environment in which those living with mental illness feel comfortable seeking help, treatment and support on their journey toward recovery” (MHCC, 2013a). As the literature for Opening Minds asserts, the struggle against the stigma of mental illness rests on “improving understanding” of the “true reality” of mental illness. Processes of typification that operate through prevalence discourse rationalize suffering, transforming the messy embodied experiences of trouble, anguish, and distress into clearly defined symptoms of a disorder that can anticipate and lead to the proliferation of mental illness treatment. Having an “open mind” involves cultivating an understanding of the prevalence of mental illness, its symptoms and causes, their pervasiveness, and the specific populations that feel their impact most acutely. Being open minded also involves suspending any interpretations that might challenge or contradict a medicalized understanding of situations and relations (Aubrecht, 2012b). Prevalence discourse categorizes mental illness in terms that organize a sense of people, problems, and their resolutions. Importantly, prevalence discourse functions in a semi self-sufficient fashion by identifying a condition that is supposed to be unrelated to the context of its appearance, namely, daily life with others. The condition can appear anywhere, in anyone, and at any time. Mental illness does not discriminate. Moreover, the prevalence discourse is very powerful as a categorical containment of difference – of thought, behaviour, appearance, emotion, comportment, and movement – by mental illness diagnoses. It is possible to re-imagine injustices now as the symptom of failed individuality that is decontextualized. According to the logic of prevalence, injustice can potentially happen to anyone, and the struggle to carry on in an expected fashion is something that we all experience, though to varying degrees. Here it is important to note the long and complex history of mental illness and of intellectual capacity, as these diagnoses have been used to manage, sort, and control people in racialized,

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gendered, and economic terms (Illich et al., 1977; Morrow, 2004; Reaume, 2002; Ussher, 2010; Ware, 2004). Through the prevalence problematic we have a unique situation in which structural inequalities are included as a variable in the determinants of health that influence access to adequate treatment; at the same time these determinants are negated as part of the contextual grounds of the apparent growth and expansion of the mental health and illness industry. This growth is visible in the surge of  psychopharmaceutical regimes and also in the rising popularity of self-help books that frequently sit at the top of bestseller lists (Philip, 2009). The dilemma of the one and the many thus makes mental illness stand out as a question regarding the problem of the one and of the nature of the many who do not respond appropriately – and not as a question regarding the social organization of the educational and treatment regimes for mental health and illness. The one-in-five prevalence problematic represents mental illness as a problem in need of a solution, which provides the back-drop against which individuality can appear (Titchkosky & Michalko, 2012). The prevalence problematic is a form of interpersonal address that structures relations to consciousness of human difference and suffering, while producing a sense of division between a “touched” individuality (the one in need of help) and a productive individuality by those untouched but capable of receiving education about professional help. In all cases the prevalence problematic as used and distributed by the mental health and illness industry gives non-expert populations the task of addressing their individuality. Individuality becomes, as Bauman (2004) has shown, an urgent “call” and a task from which no person today can escape, because the “modern state did whatever it took to make such a duty obligatory for all people inside its territorial sovereignty” (p. 20). Individuality can now be understood as the duty to know better the way in which medical experts diagnose what we do and do not know, experience, and perhaps suffer. One consequence of this is the reproduction of a normative order that is informed by and reproduces the primacy of a medicalized version of human suffering as well as our responses to it. Shifting the Frame and the Collective Gaze This chapter demonstrates that prevalence discourse is doing much more than representing objective and measurable states of illness or suffering. Understood as a prevalence problematic, the use of numerical depictions of human conditions (for example, “1 in 5 Canadians will experience a mental illness in their lifetime”) frames a particular way of perceiving

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problems as well as their solutions. The prevalence problematic works in mental health awareness campaigns to frame a plethora of interpersonal actions as illness meeting stigma, which has the social and political consequences of normalizing the medicalized depiction of many and various aspects of collective life. Framing human difference and suffering as this singular picture, the prevalence problematic also supports calls for a more medicalized version of daily life in the face of the assumed failure of public responses. As a form of social action, prevalence discourse helps to make perception of human suffering into an occasion for accepting and seeking professional treatment, while also minding the stigmatizing potential of the thoughts and actions of the public that may bar treatment. The use of prevalence discourse in public awareness campaigns asks us to demonstrate our healthy rational choices while witnessing the spectacular problem of mental illness, thus returning the collective gaze once again to a clear sense of the problem and its solution. This discourse not only assumes the correct shape and figure of human distress and anguish as mental illness but also rapidly propels vast numbers of people into the figure of the overwhelmed, who may be overwhelming the rest. The “one in five” is also connected in prevalence discourse to the “one in three”: “It’s troubling that only one in three people get the help they need” (Bell Canada, 2013). There is more trouble, however. The “one in three” serves to represent the notion that help is available, accessible, and, most important, effective. This troubling fact promotes the idea that the help is there; accessing it, however, is impeded for at least two in three. The impediment to help, from the point of view of the prevalence problematic, is, of course, stigma. And it is the four in five who stigmatize the one in five and have something to do with the production of only one in three getting the needed help. The full ramifications of the medicalization of everyday life now comes to light: everyone is framed as in need of expert help. Moreover, everyone should be oriented to the eradication of stigma so that people can get the required help. Taking for granted that anyone getting help is helped, expert help remains firm and unquestioned. This sense of help grounds the treatment of some and the education of many to eradicate stigma so that two in three can gain access to treatment and, even, join the team of the mental health educational campaign. The prevalence problematic draws treatment and education into a primary authoritative interrelation that can frame people’s troubled relations at work and in family, leisure, and love. More troubling still, the prevalence problematic logic, in order to remain logical, must ignore the alternative relations to help.  It must ignore, for example, the psychiatric survivor movement (Chamberlin, 1995), the Mad movement (LeFrançois, Menzies, & Reaume, 2013), the anti-­psychiatry

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movement (Cooper, 1971; Burstow, LeFrançois, & Diamond, 2014), the Indigenous studies critique of imposed expert control via Western therapy (Million, 2013), and the movement to theorize ableism (Goodley, 2014; Kumari Campbell, 2009). Those directly involved in these movements have received help and yet do not identify as part of those depicted in the one in five or the one and three of prevalence discourse. This dis-identification is not easily framed as yet another form of stigma. Psychiatric survivors, for example, are not speaking of surviving mental illness; nor are they belittling mental anguish as an insignificant experience. In stark contrast, they are speaking of surviving psychiatric treatment, of surviving help (Chamberlin, 1995). Psychiatric survivors are not easily framed by either the treatment or the educational demands supposed by the literature that makes use of the prevalence problematic and in which the survivors become almost unimaginable. The discursive erasure of these movements within and against dominant medicalized interpretations of what Goffman (1963) so infamously refers to as “undesired differences” (p. 5) should be more than troubling for any critical inquiry into mental health and illness as a question of social justice, especially given the cultural imaginary of struggle evoked by the conceptions of “mad” or “survivor” (Orgad, 2009). This chapter has engaged prevalence as a modern technology of accounting, surveilling, segregating, and controlling that is based on and reproduces a naturalized form of social marginalization and oppression. Regarding prevalence as a problematic produced by and for the current forms of governing social life, we demonstrated that a social justice reading of takenfor-granted facts is a way to cultivate a critical self-reflection of the cultural assumptions that frame some accounts of populations as factual problems. A social justice orientation includes questioning what seems beyond question and, as such, is already framing the meaning or sense of lives. We hold that there is an alternative power to be found in addressing the discourse on the prevalence of mental illness. This work can narrate the social significance of a now ubiquitous way of speaking of our contemporary troubles. A social justice lens can reframe the frame. That is, our chapter aimed to show that the powerful frame of mental health accounting and educational campaigns has itself become prevalent in contemporary life. Perhaps this is the prevalence that deserves greater attention.

NOTES 1 This is taken from Clean Living Recovery’s (2013) mental illness anti-stigma campaign. However, the notion of one in five appears often and frequently

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throughout Canadian mental illness materials and often without citation. As a taken-for-granted, “sensible sayable” (Titchkosky, 2011, p. 73), its repetitive appearance and use make it a prime site for social inquiry because it is a form of knowledge that is doing something, regardless of its truth, verifiability, or datedness. We believe that the one-in-five fact has been generated from Bland et al. (1988). 2 We would like to thank Anne McGuire for her work on prevalence, which she theorizes in chapter 3, “Act NOW: The S/Pace of Advocacy in a Temporality of Urgency,” of her War on Autism (2016, pp. 103–44). We also thank Rod Michalko for his discussions and editorial assistance on earlier drafts of this chapter. 3 For example, Davi Johnson Thornton (2010)’s examination of the Depression Is Real campaign that was introduced by the National Alliance on Mental Illness and the National Urban League, a campaign that targets racial minorities. Thornton examines how the campaign can be interpreted as an expression of a neoliberal governmentality that operates through the discursive construction of racial and cultural differences as “risks” that can only be successfully eradicated by deference to medical science and professional expertise. 4 Canada is not alone in providing mental health educational material that begins from the prevalence problematic of mental illness. For example, consider the following: United States, http://www.nimh.nih.gov/health/publications /the-numbers-count-mental-disorders-in-america/index.shtml; Europe, http:// ec.europa.eu/health/archive/ph_determinants/life_style/mental/docs /background_paper_en.pdf (p. 10); and the globe, http://jama.jamanetwork .com/article.aspx?articleid=198847. 5 Awareness campaigns are used to communicate public knowledge about a broad array of issues including crime; gambling (Responsible Gambling Council’s Stop the Chase campaign, http://stopthechase.ca); interpersonal violence (against women, children, elders; for example, YWCA’s Rose campaign, http://www.rosecampaign.ca); smoking (Health Canada’s Break It Off campaign, http://breakitoff.ca); alcohol and illicit drug use and abuse; sexually transmitted disease (for example, CATIE’s Attack of the Cursed Syphilis campaign, http://www.catie.ca/en/syphilis); and medical conditions such as obesity, cancer, heart attack, stroke, and Alzheimer’s disease and related dementias (for example, Alzheimer Society of Canada’s Forget Me Not campaign, http://www.alzheimer.ca/en/ns/About-us/About-the-Alzheimer -Society/Forget-Me-Not-Symbol). Although each campaign is recognized as distinct, they are unified in the shared objective of recognizing a problem, identifying the risk, symptoms, and spread of this problem, and taking steps to eliminate, avoid, or reduce the risk represented by the problem.

The Prevalence Problematic in Mental Illness Discourse  329 6 Creative praxis, such as poetry, offers one expression of an alternate and potentially transgressive mode of portraying the lived realities of mental health and illness. A special issue of the Journal of Progressive Human Services edited by Marcia Cohen (2013), titled “Radical Thought & Praxis,” includes poetry, such as Katie Aubrecht’s (2013) “Mo(u)rning Grief,” which depicts the experience of life on the other side of public perceptions of “problem” people. 7 For a poignant discussion of this in relation to the 2013 Bell Let’s Talk campaign, see Lucy Costa (2013). For a thorough approach to the need to theorize ableism in relation to normal orders of daily life, and for assistance in questioning the ways in which the concept of human is framed in a disturbing fashion, see Dan Goodley (2014). REFERENCES Aubrecht, K. (2012a). Disability studies and the language of mental illness. Review of Disability Studies: An International Journal, 8(2), 31–44. Aubrecht, K. (2012b). The new vocabulary of resilience and the governance of university student life. Studies in Social Justice, 6(1), 67–83. Retrieved from https://brock.scholarsportal.info/journals/SSJ/article/view/1069 Aubrecht, K. (2013). Mo(u)rning grief. Journal of Progressive Human Services, 24(3), 223. http://dx.doi.org/10.1080/10428232.2013.836037. Bauman, Z. (2004). Identity. Cambridge: Polity Press. Bell Canada. (2013). Let’s talk. Retrieved from http://letstalk.bell.ca/en/ Bland, R.C., Orn, H., & Newman, S.C. (1988). Lifetime prevalence of psychiatric disorders in Edmonton. Acta psychiatrica Scandinavica, 77(338), 24–32. Medline:3165592 http://dx.doi.org/10.1111/j.1600-0447.1988.tb08544.x Burstow, B., LeFrançois, B.A., & Diamond, S. (2014). Psychiatry disrupted: Theo­rizing resistance and crafting the (r)evolution. Montreal: McGill-Queens University Press. Canadian Community Health Survey (CCHS). (2003). Mental health and wellbeing 2002. Retrieved from http://www.statcan.gc.ca/daily-quotidien/030903 /dq030903a-eng.htm Chamberlin, J. (1995). Rehabilitating ourselves: The psychiatric survivor movement. International Journal of Mental Health, 24(1), 39–46. http://dx.doi.org /10.1080/00207411.1995.11449302 Clean Living Recovery. (2013). Clean Living Recovery Support Centre Inc. services. London, ON. Conrad, P. (2001, June). Genetic optimism: Framing genes and mental illness in the news. Culture, Medicine and Psychiatry, 25(2), 225–47. Medline:11453260 http://dx.doi.org/10.1023/A:1010690427114

330  Tanya Titchkosky and Katie Aubrecht Cooper, D. (1971). Psychiatry and anti-psychiatry. London: Paladin. Costa, L. (2013, March). Rethinking the consumption of mental health crusades. Obiter Dicta. Retrieved from http://obiter-dicta.ca/2013/03/11/rethinking-the -consumption-of-mental-health-crusades/ Garland Thomson, R. (1997). Extraordinary bodies: Figuring physical disability in American culture and literature. New York: Columbia University Press. Goffman, E. (1963). Stigma: Notes of the management of a spoiled identity. Toronto: Simon & Schuster. Goodley, D. (2014). Dis/ability studies: Theorizing disablism and ableism. London: Routledge. Grech, S. (2011). Recolonising debates or perpetuated coloniality? Decentring the spaces of disability, development and community in the global South. International Journal of Inclusive Education, 15(1), 87–100. http://dx.doi.org /10.1080/13603116.2010.496198 Illich, I., Zola, I., McKnight, J., Caplan, J., & Shaiken, H. (1977). Disabling professions. London: Marion Boyers Publishing. Kumari Campbell, F.K. (2009). Contours of ableism: The production of disability and abledness. New York: Palgrave Macmillan. http://dx.doi.org/10.1057 /9780230245181 La Monica, N., & Chouinard, V. (2013). Warning: Labels may cause serious side effects for learning disabled students. In A. Azzopardi (Ed.), Youth: Responding to lives – An international reader (pp. 193–209). Rotterdam: Sense Publishers. http://dx.doi.org/10.1007/978-94-6209-431-4_13 LeFrançois, B.A., Menzies, R., & Reaume, G. (2013). Mad matters: A critical reader in Canadian Mad studies. Toronto: Canadian Scholars Press. Lovell, A.M. (2014, August). The World Health Organization and the contested beginnings of psychiatric epidemiology as an international discipline: One rope, many strands. International Journal of Epidemiology, 43(Suppl 1), i6–i18. Medline:25031048 http://dx.doi.org/10.1093/ije/dyu125 McGuire, A. (2010). Disability, nondisability and the politics of mourning: Re-conceiving the “we.’ Disability Studies Quarterly, 30(3/4). Retrieved from http://dsq-sds.org/article/view/1282/1309 McGuire, A. (2016). War on autism: On the cultural logic of normative violence. Ann Arbor: University of Michigan Press. Mental Health Commission of Canada (MHCC). (2013a). The facts. Retrieved from http://strategy.mentalhealthcommission.ca/the-facts/ Mental Health Commission of Canada (MHCC). (2013b). The mental health strategy for Canada. Retrieved from http://www.mentalhealthcommission.ca /English/focus-areas/mental-health-strategy-canada

The Prevalence Problematic in Mental Illness Discourse  331 Mental Health Commission of Canada (MHCC). (2013c). Opening minds. Retrieved from http://www.mentalhealthcommission.ca/English/initiatives /11874/opening-minds Michalko, R. (2002). The difference that disability makes. Philadelphia: Temple University Press. Million, D. (2013). Therapeutic nations: Healing in an age of Indigenous human rights. Tucson: University of Arizona Press. Mood Disorders Association of Ontario (MDAO). (2013). Your symptoms. DepressionHurts.ca. Retrieved from http://depressionhurts.ca/en/about/ Morrow, M. (2004, Fall). Mental health reform, economic globalization and the practice of citizenship. Canadian Journal of Community Mental Health, 23(2), 39–50. Medline:16138645 http://dx.doi.org/10.7870/cjcmh-2004-0012 Orgad, S. (2009). The survivor in contemporary culture and public discourse: A genealogy. Communication Review, 12(2), 132–61. http://dx.doi.org/10.1080 /10714420902921168 Philip, B. (2009). Analysing the politics of self-help books on depression. Journal of Sociology (Melbourne, Vic.), 45(2), 151–68. http://dx.doi.org/10.1177 /1440783309103343 Reaume, G. (2002, July–August). Lunatic to patient to person: Nomenclature in psychiatric history and the influence of patients’ activism in North America. International Journal of Law and Psychiatry, 25(4), 405–26. Medline:12613052 http://dx.doi.org/10.1016/S0160-2527(02)00130-9 Smith, D. (1978). “K is mentally ill”: The anatomy of a factual account. Sociology, 12(1), 23–53. http://dx.doi.org/10.1177/003803857801200103 Thornton, D.J. (2010). Race, risk, and pathology in psychiatric culture: Disease awareness campaigns as governmental rhetoric. Critical Studies in Media Communication, 27(4), 311–35. http://dx.doi.org/10.1080/15295030903583598 Titchkosky, T. (2007). Reading and writing disability differently: The textured life of embodiment. Toronto: University of Toronto Press. Titchkosky, T. (2011). The question of access: Disability, space, meaning. Toronto: University of Toronto Press. Titchkosky, T., & Aubrecht, K. (2015). WHO’s MIND? Whose future? Mental health projects as colonial logics. Social Identities: Journal for the Study of Race, Nation and Culture, 21(1), 69–84. http://dx.doi.org/10.1080/13504630 .2014.996994 Titchkosky, T., & Michalko, R. (2009). Rethinking normalcy: A disability studies reader. Toronto: Canadian Scholars Press. Titchkosky, T., & Michalko, R. (2012). The body as the problem of individuality: A phenomenological disability studies approach. In D. Goodley, B. Hughes, &

332  Tanya Titchkosky and Katie Aubrecht L. Davis (Eds.), Disability and social theory: New developments and directions (pp. 127–42). New York: Palgrave Macmillan. http://dx.doi.org/10.1057 /9781137023001_8 Ussher, J. (2010). Are we medicalizing women’s misery? A critical review of women’s higher rates of reported depression. Feminism & Psychology, 20(1), 9–35. http://dx.doi.org/10.1177/0959353509350213 Voronka, J. (2009). Making bipolar Britney: Proliferating psychiatric diagnoses through tabloid media. Radical Psychology, 7(2). Retrieved from http:// radicalpsychology.org/vol7-2/Voronka.html Ware, L. (2004). Ideology and the politics of (in)exclusion. Counterpoints: Studies in the postmodern theory of education. Bern, Switzerland: Peter Lang Publishing. Winston, I. (2013, 8 February). Part 1 of 2: Breaking the stigma of mental illness; Everyone knows someone who is affected, experts say, and we must educate ourselves to deal with it properly. Ottawa Citizen. Retrieved from https://www .pressreader.com/canada/ottawa-citizen/20130207/282583080397929 World Health Organization (WHO). (2001). Burden of mental and behavioural disorders. The world health report, 2001: Mental health; New understanding, new hope. Retrieved from http://who.int/whr/2001/chapter2/en/index3.html World Health Organization (WHO). (2011). 2011 World Mental Health Day: The great push: Investing in mental health. Geneva: Author.

12 Madness in the Media: An Intersectional Analysis of Educational Films and Television Programming, 1940–69 w e n dy c h a n a n d d o r o t h y e . c h u n n

Introduction In this chapter we present findings from a pilot research project on documentary films and television programming about “mental illness” that were used in Canada during the period from 1940 to 1969 for public and professional education.1 The impetus for the study was the considerable research attesting to the significance of mainstream media in framing social issues and problems in liberal states, and to the increasing power of visual media in this regard during the twentieth century (Kuhn, 1985, 1988; May, 1980). While the impact of media is not homogeneous and viewers may interpret the same images differently (Hall, 1993; Schlesinger et al., 1992; Schubart, 1995; Stuart, 2006), it is still very important to examine visual representations of topics such as madness in public education and culture because for many people mainstream media are the sole source of information on these issues. Moreover, although researchers have produced a sizeable literature on the depiction of mental illness in Hollywood films (see Fleming, 1985; Harper, 2009; Wahl, 1995; Zimmerman, 2003), they have produced few analyses of documentary films on issues related to madness that were prepared expressly for public education, especially in the Canadian context (Druick, 2007; Low, 2003). Intersectional analyses of such films are particularly lacking. Our pilot project addresses these gaps. From an intersectional perspective we have attempted to answer two questions: Did the changes in the images of madness in educational media during the period between 1940 and 1969 reflect shifting conceptions of and prevailing attitudes towards people in mental distress? To what extent did educational documentaries on madness challenge or reinforce the inequalities stemming from gender, race,

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class, and other social relations during that period? Although the study findings are by no means definitive, our analysis supports the conception of mental illness as a social construction and suggests that dominant representations of madness in our sample of films did reflect changing historical and cultural contexts over time. The horrors of the Second World War, and in particular the genocide that was justified by the ideology of a master race, led to the post-war suppression, albeit not the eradication, of the idea that had been widespread in Canada and elsewhere during the interwar years that science, in the form of eugenic engineering, could breed out mental and physical “defects” (Besley, 2002; McLaren, 1990). With this temporary discrediting of hard eugenic approaches, such as sterilization, which had been advocated by the inter-war mental hygiene movement, two other perspectives on mental illness became influential in shaping public attitudes. One strongly emphasized the social causes of and responses to “deviant” behaviour (for example, juvenile delinquency, mental illness) and was premised on the belief that “bad” families, neighbourhoods, and peers, rather than innate characteristics of the individual, were the source of mental distress (Muncie, McLaughlin, & Langan, 1996; Pfohl, 1994). The second and ultimately more dominant approach to deviant behaviour in Canada post–Second World War was the “psy-” perspective, or the medical model of mental illness. This perspective was based on the belief that persons in mental distress were suffering from an illness or a personality disorder that could be prevented or diagnosed, treated, and cured scientifically (Chenier, 2008; Gleason, 1999a). The release of the first edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1952 arguably marked psychiatry’s successful establishment, in Canada as well as the United States, of a professional monopoly founded on psychiatrists’ claimed knowledge of madness and expertise to respond to it.2 Although they were ostensibly incompatible approaches, social and “psy-” perspectives overlapped in several ways during the period of our study. First, both social and “psy-” perspectives were premised on the belief that experts and professionals could accurately identify the “normal” and the “deviant.” Thus, they could scientifically differentiate mental health from mental illness. Second, in keeping with the liberal optimism that initially characterized Canada and other flowering welfare states after the Second World War, they shared an emphasis on inclusion, though each envisaged different ways of achieving it (Guest, 1997; Struthers, 1994). With respect to abnormal behaviour, then, adherents of both approaches assumed that most deviants were salvageable and could be rehabilitated and assimilated into mainstream Canadian society.

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Third, both social and “psy-” perspectives were exclusionary in the sense that their definition of normal was narrow. As Mona Gleason (1999a) puts it, the goal was “normalization of the ideal,” which was represented by the traditional nuclear family organized around marriage and a sex or gender division of labour. By that definition, however, many Canadian families were pathological and in need of normalization (Bohaker & Iacovetta, 2009; Iacovetta, 2006). Therefore, it was essential to focus on the mental hygiene of children and youth to promote their sex/gender development – socialization into normative femininity and masculinity – through the prevention or diagnosis and treatment of deviance, including homosexuality and juvenile delinquency (Adams, 1997; Low, 2003). Thus, it was primarily through children that the soft side of mental hygiene, with its emphasis on education, was resurrected in the post–Second World War era. These ideas and assumptions are evident in the educational documentaries and television programming that we analysed. The sample includes two main types of media representation, each seemingly aimed at a different audience. One category of films focuses primarily on the clinical education of mental health professionals and experts. Of greater interest, perhaps, are the films that target White middle-class and respectable working-class parents and their children. Some warn them about the dangerous consequences of deviant behaviour for adults and children who stray from normative masculinity and femininity, and emphasize the need to embrace conformity and fit into mainstream society (Adams, 1997; Gleason, 1999a, 1999b). Others underline the danger to innocent, vulnerable children and youth from mentally ill strangers – sexual predators who lurk in public spaces – and the need to protect future citizens, who are portrayed as the only guarantee that Canadian society and the status quo will continue (Chenier, 2008). After the Second World War the “psy-” construction of the pedophile as a “dangerous stranger” with an uncontrollable “sexual desire for young people” (Chenier, 2012, p. 1) entrenched the still pervasive, and demonstrably false, idea that sexual offences against children are not committed by people they know. This concern with stranger danger was especially prevalent in media representations during the 1950s in the broader context of the hysteria, both at home and abroad, about communism and the pervasive fear that the cold war between the West and the former USSR would erupt into global nuclear annihilation (Gleason, 1999b; Iacovetta, 2000; Kinsman, 1987). Although “psy-” approaches to madness became increasingly dominant during the 1940s and 1950s, it is important to keep in mind that the ascendancy of new approaches to madness does not mean that old ones,

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such as those based on genetics, disappeared. The existence of competing discourses about madness thus created possibilities for contesting the status quo. Take, for example, the competing conceptions of homosexuality. At the beginning of the time period covered by our sample of films, homosexual sexual relations between consenting adults in both public and private spaces were illegal. Increasingly, however, psychiatry categorized homosexuality as an illness, a treatable mental disorder. Canada decriminalized and helped to normalize private, consensual homosexual relations in 1969 (though the American Psychiatric Association did not remove homosexuality from the DSM until 1973) (Drescher, 2012). The reconstruction of homosexuality was due in part to the anti-psychiatry movements that emphasized the “right to be different” (Kittrie, 1971) and provided the rationale for community-based treatment and deinstitutionalization, and in part to the gay liberation movements of the 1960s. This more critical perspective on madness is also evident, but not dominant, in our film sample. In what follows we document the ways in which the perspectives and trends set out above are represented in the films analysed. We preface our qualitative analysis with a brief discussion of the study methodology and our theoretical framework, followed by a summary of quantitative findings. In subsequent sections we discuss the key themes in the film sample as well as the competing explanations of and proposed responses to madness. Finally, we examine how current representations of madness continue to be shaped by these earlier depictions, and outline the implications of our exploratory study for contesting what have become common-sense images of Mad people. Methodology The process of selecting the twenty-eight educational documentaries used for this project involved, first, conducting a systematic search and compiling a bibliography of all titles and related guides used between 1940 and 1969 for public education on madness. We used a variety of film and video databases in our search that were easily accessible, including the National Film Board (NFB) archives and online video sites (for example, Google video, YouTube), along with national and regional provincial archives. We employed a broad range of search terms related to madness and mental health to capture as many films as possible.3 We identified a total of 336  films within the specified time period. Second, we grouped the films into three categories: mental health (176), addictions (79), and crime and health (81). Since our project budget and time frame did not allow for an analysis of all

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336 films, we sampled the films that were both easily accessible (available either locally or online) and from the mental health list, because these films included the broadest range of topics from our search terms and offered a good starting point for this exploratory study.4 The development of the coding sheet drew from the relevant literature on madness and mental health, as well as the scholarly literature on intersectionality. As such, our coding categories included both quantitative themes, such as the social characteristics of authority figures (age, gender, race) in the films, or the causes and solutions mentioned, and qualitative themes, such as the language used to talk about mental health and the types of images presented in the films. Two researchers coded each of the twenty-eight documentaries to ensure consistency in the coding process.5 Theoretical Framework Our data analysis and interpretation are informed primarily by the feminist literatures on intersectionality and social regulation. With regard to the former, we draw on the work of Black feminists who developed the concept of intersectionality. As discussed earlier in this volume, Kimberlé Crenshaw is generally credited with introducing the concept. In a pivotal article Crenshaw (1989) used U.S. anti-discrimination law as an exemplar to illustrate and challenge the dominant trend in theory, politics, and law to treat race and gender “as mutually exclusive categories of experience and analysis” (p. 139). She argued that relying on a “single axis framework” in anti-discrimination cases “theoretically erased” Black women (pp. 139–40). As a result, the most privileged members of each group – Black men experiencing race discrimination, and White women experiencing sex discrimination – become the sole focus of attention (p. 140). Coming from a sociological perspective, Patricia Hill Collins (1990/2000) also concluded that additive approaches to the analysis of oppression were fatally flawed, and therefore race, class, gender, and other social relations needed to be reconceptualized as interlocking systems of subjugation. Her own significant contributions to this reconceptualization of the “social relations of domination and resistance” was to differentiate between intersectionality and what she called “the matrix of domination,” and at the same time to illuminate the linkages between them (1990/2000, pp. 225–30). “Intersectional paradigms remind us that oppression cannot be reduced to one fundamental type, and that oppressions work together in producing injustice. In contrast, the matrix of domination refers to how these intersecting oppressions are actually organized. Regardless of the particular intersections

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involved, structural, disciplinary, hegemonic, and interpersonal domains of power reappear across quite different forms of oppression” (Collins, 1990/2000, p. 18). Crenshaw and Collins launched a wave of research and publications on intersectionality during the 1990s, and their work remains influential among feminists and other critical theorists. For us, a great strength of their theorization of intersectionality is that it illuminates how people may experience multiple oppressions or privileges, yet relatively few are disadvantaged or privileged across the board. We share the interest of these theorists in revealing how intersectionality creates different kinds of lived experiences and social realities, and we are equally concerned with how diversity is denied by what passes as objective knowledge. In this chapter we draw on their insights to examine intersectionality and mental health within what has been called the “psy complex.” This complex has been defined as an intricate network of theories, professions, and practices governing “the regulation of normality” (Rose, 1990, pp. 130–3). Regulation can take the form of either coercive or seemingly non-coercive normalization. The former is imposed, while the latter is aimed at stimulating self-governance and adherence to the status quo (Brock, 2003). In post–Second World War Canada the “psy-” disciplines flourished, and psychologists and psychiatrists succeeded in gaining control over the definition of normality. As we noted earlier, Mona Gleason’s (1999a) research has demonstrated how members of these professions worked hard to entrench the “normalization of the ideal,” which, in the realm of mental health, meant adherence to a life plan organized around the traditional nuclear family unit in which both parents and children played specific roles and fulfilled age- and gender-related responsibilities. “Psy-” professionals also staked their claim as the regulators of normality, arguing that they had the expertise to determine which individuals and groups could be trusted to self-regulate through education and other non-coercive measures; to identify those who were slipping towards deviance but were salvageable through re-education; and to isolate and contain the “incorrigibles.” Both coercive and non-coercive forms of regulation are depicted in our film sample, but, as we will see, the majority of the films fall into the second category. Sample Overview A short overview of the films used in this study will help to contextualize the thematic discussion that follows. Most of the films in our sample were either documentaries or docudramas. Many were produced in the United

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States but were used for public and professional education in Canada as well. There is also a long documentary-film tradition in Canada, in which federal and provincial governments have promoted film-making about daily Canadian life to “encourage cultural consciousness at home and political and economic awareness abroad” (Hogarth, 2001, p. 123). Documentary films and docudramas provide facts about particular issues or events, with docudramas exercising some degree of artistic licence to convey the narrative. Often, opinions and specific messages for viewers are also present in these films. During the inter-war years Canadian policymakers increasingly regarded film-making as an efficient medium for documenting the nation and its national interests for public consumption and education (Hogarth, 2001). Only four films in our sample did not fit into these two categories and can instead be classified as television programs. The establishment of the National Film Board in 1939 institutionalized documentary film-making in Canada, and its purpose was overwhelmingly didactic (Roberge, 1960). The influence of a direct-address style was evident in both the NFB and the non-NFB films that we analysed, where an authoritative, usually off-screen, narrator interpreted the visuals – regarded as the Griersonian tradition (a tribute to NFB’s founder, John Grierson). Twenty-four of the films in this project employed a narrator to provide explicit, authoritative commentary for the viewer. In many cases this was complemented by the use of experts or professionals in the film’s dramatization, such as doctors, nurses, psychiatric social workers, teachers, counsellors, and police officers, to add visual images of authority. During the period in which the films were produced (1940–69) Canada was a colonial, patriarchal society, and the social characteristics of these authority figures were representative of the times (Comacchio, 1994). Figures of authority were predominantly male, White, and middle-class because women and people of colour were not at the time deemed legitimate authority figures owing to their subordinate status. However, the individuals of concern in the films included White, middle-class women and children because they were identified as vulnerable and easily influenced. Fears about women and children’s well-being for the sake of national health and the nation’s future led, as discussed previously, to the rise of mental hygiene professionals – psychiatrists, counsellors, social workers, and educators – who were staking claims for their expertise in shaping the health of Canadians (Comacchio, 2002). The racial landscape of these films, however, depicted a White society, the normalized ideal, and thus people of colour and Indigenous peoples were virtually excluded from representation. Gleason (1997) argues that

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definitions of normalcy were equated with the idealized, Anglo-Saxon, middle-class individual and family, and differences between and across ethnic or class groups were minimized. Constructive education about the ideals of national and individual life was a key strategy in the attainment of good health, and documentary films played an important role in delivering these messages. Consistent with the findings of other historians, our films depicted advice that was rooted in middle-class, racialized, and gendered ideals about what constituted a good, normal, healthy citizen. The individuals and families portrayed in the films reflected the target audience – primarily White, middle-class individuals and families whose stability after suffering through war and the 1930s Depression was seen to be in peril and in need of strengthening (Gleason, 1997). In the period of our study, public health campaigns using the media to modify public attitudes through education were an important component of legitimizing mental illness and educating the Canadian public (that is, the White working and middle classes) about their own mental health status. With the help of experts in psychology and psychiatry – people who were “scientifically trained in defining and treating social problems such as disease, immoral conduct, unemployment, feeble-mindedness, crime and pauperism” (MacLennan, 1987, p. 8) – Canadians could, voluntarily or sometimes through coercion, access a range of techniques and treatments, such as drug and shock (electroconvulsive) therapy, that were tailored for their condition (Gold, 1988). The “psy-” approach to mental illness increasingly displaced the social perspective argument that social problems stemmed from social pathologies and needed to be addressed through social reform. The “psy-” idea of individualized treatment is based on the view that social problems are largely the result of individual deficiencies (whether socially derived or innate), and therefore the solution should fit the needs of the individual. The films in our study adhere to this line of thinking. In almost half of the films (thirteen) the symptoms or causes of mental health issues were seen largely to be the result of individual deficiencies, and the proposed remedy, such as adopting a better attitude, was equally individualistic. Key Themes in Films Qualitative analysis revealed that our sample of educational documentaries can be divided into three groups, each of which captures a dominant, overarching theme. The first category of films develops the theme mentioned previously, that children can be both dangerous to others as well as endangered by others. With regard to endangerment, the films in our sample

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emphasize the external threats to (White) children, with the most serious source of potential harm emanating from male strangers who are mentally ill sexual predators (Dangerous Stranger, 1950; Say No to Strangers, 1957; The Strange Ones, 1963). In these films girls and boys are equally at risk from “strange ones” (that is, pedophiles) and need to heed the warnings of teachers, parents, police, and other adult authorities not to engage with people they do not know, regardless of how nice they may appear to be, because “the strange ones look just like anyone else” (The Strange Ones, 1963). They are indistinguishable because, among other things, they are also White and appear “normal.” Boys face the additional possibility of harm from homosexuals who hang out in public spaces, waiting for the opportunity to befriend them, a perceived threat to heteronormativity that was of great public and political concern during the period of our study (Adams, 1997; Kinsman, 1987). The demonization of homosexuality in films such as Boys Beware (1961) aimed to remove that threat to the sexual norm by instilling fear and avoidance behaviours in young men. In that film Mike M. accepts a ride from a friendly, non-threatening stranger. As the boy gets into the car, the narrator tells viewers in a sombre voice, “He probably never realized until it was too late that he was riding in the shadow of death. But sometime that evening Mike M. traded his life for a newspaper headline.”6 While children are vulnerable and easily threatened, some of the films tell us that they can also be threatening to others, and timely intervention is needed to keep them on the conformist path. Again, young men are of particular concern. For instance, several docudramas in our sample focus on White, working- and middle-class youths with bottled-up anger who seem to be drifting inexorably into juvenile delinquency (Age 13, 1955; Angry Boy, 1951; Boy with a Knife, 1956). As with the issue of “normal” sexuality, these films echoed real-life concerns about the perceived threat to social order posed by delinquent youth subcultures in the post-war decades (Hall & Jefferson, 1976; Pfohl, 1994). Some of the boys depicted in these films are in trouble at school and have already engaged in criminalized activities, such as petty theft and vandalism. One carries a knife and has threatened peers with it (Boy with a Knife), while another pulls a gun on his classmates (Age 13), creating palpable fear that the unaddressed anger of such boys could lead to serious violence. A second group of films in our sample addressed the related theme of mental, emotional, and physical fitness (hygiene) as the key to promoting conformity and social integration in post-war Canada. Some of the documentaries emphasized the use of social initiatives for promoting healthy

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citizens, and others focused, at a more micro, individual level, on the need for emotional training of adults and especially of children, who represented the future of Canadian society. Documentaries emphasizing external supports reflected both the post-war focus on building a better world and the belief that deviant behaviour such as juvenile delinquency wasted youth resources and needed to be prevented or reduced (Wastage of Human Re­ sources, 1947). One way to accomplish that goal was, for example, to provide adequate public recreational facilities (A Chance to Play, 1950). Such facilities would contribute indirectly to the prevention of delinquency by helping to maintain the community’s moral and physical health and thus “keep the American family together as a unit” (A Chance to Play, 1950). The paternalistic and criminally mistaken view of residential schools as a means of integrating “the oldest Canadians” (that is, Native children) into mainstream Canadian society is also evident in a short broadcast by the Canadian Broadcasting Corporation entitled A New Future (1955), one of the few instances in which racialized youth appear in our sample. However, although racialized people are few, race is central in our sample of films. The message is clear: Whiteness is the gold standard with respect to normality, and though racialized people can never be White, they can be integrated into society by emulating those who are. A specific emphasis on mental hygiene was evident in five of the films in this sample, in which the desire to help people with their emotional problems was a central theme. In these films medical experts and professionals drew attention to the range of symptoms and behaviours that might lead to a personality disorder or serious mental illness, and viewers were urged to seek help if they displayed the problems mentioned. The films span the period between 1951 and 1967, when the mental hygiene movement, or campaigns in “the adjustment of individuals to themselves and the world at large with the maximum of effectiveness, satisfaction, cheerfulness and socially considerate behaviours, and the ability to face and accept life’s realities” (Gleason, 1999a, p. 28), was fully underway. Problems with boredom, jealousy, anxieties, high expectations, fear, disappointment, and lack of self-confidence were highlighted in the films as emotional states that could lead to illness and therefore needed attention. Often the dramatization involved a case study of someone struggling with these emotions and the impact these struggles had on their lives and the people around them. For example, in the film Jealousy (1954) we see a wife and husband arguing about whether or not he has been unfaithful because he comes home late from work. She orders him out of the house. Only after his work colleagues have verified his explanation does she realize

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that she may have overreacted. Similarly, in Snap Out of It (1951) we are shown a group of White, middle-class students in situations that cause them to become emotionally upset. The film focuses on one male student in particular and shows how he handles the disappointment of doing poorly on his report card. Throughout the film the narrator points out that his reactions are “infantile” and that personalities can be stunted if students do not “keep their emotions in balance.” In keeping with other research findings, the films also emphasize the need for a collaborative effort to regulate normality. Jacoby (1954), writing about the role of films in mental health education during the post-war period, notes that preventing emotional illness was a priority for government, but it was also understood that psychiatrists could not do it alone. Parents, teachers, nurses, ministers, and others were recruited to help those with emotional difficulties because building positive mental health was considered an important duty. To that end, these films depicted the mental health problem as an individual attribute and laid responsibility on individuals to overcome their emotional problems by seeking help from professionals or medical experts. For example, in the film The Empty Life (1961) boredom is seen as a “bleak, needless tragedy,” which individuals were expected to manage unless it got out of hand, in which case it was their responsibility to seek specialized treatment. As the narrator states, “it depends on him, him alone. Unless he finds help soon, not just this day, but life itself has ended for him” (The Empty Life, 1961). Furthermore, consistent with this post-war period, there was a sharp, stereotypical gender divide, in which jealousy and worry were more strongly aligned with women, and boredom and high expectations were depicted as primarily male problems. Gleason (1997) points out that emotional immaturity was seen as a threat to the health of Canadians in so far as it threatened their ability to become and remain good, productive citizens. Canadians therefore needed to be educated about the importance of maintaining healthy personality development. Gleason’s research (1997) reveals that psychologists saw emotional stability, personal fulfilment, and happiness as interconnected, and the theme of emotional illness in the films illustrates the desire to promote happy, healthy individuals and families. The third and final group of films in our sample emphasized clinical training for the treatment of mental illness and highlighted the merits of institutionalization. Seven of the films provided a focused discussion on various psychiatric procedures and practices. These films spanned almost two decades, between 1940 and 1959, and offered information about identifying symptoms of schizophrenia and depression and evaluating criminal

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responsibility. They also emphasized the role of physical treatments for mental health problems and described how to administer therapies such as psychosurgery and shock therapy. Throughout these films expert medical professionals offered detailed information about symptoms, treatment options, and prognosis, along with the advantages and disadvantages of treatment approaches. The belief was that many health conditions were the result of both physical and mental health problems, and therefore both physical and psychological therapies were needed. For example, in Ulcer at Work (1957) the doctor tells the White, middle-­ aged, male patient that “ulcers breed the wrong kind of feelings” and that “you have to work on your attitude.” Similarly, in Physical Treatment (1957) the narrator points out that “emotional extremes” can sometimes only be relieved by physical therapies. The emphasis on physical treatments in many of these films, however, was an attempt to demonstrate not only that scientific treatment by medical experts was necessary to manage the problem, as claimed in the film Symptoms of Schizophrenia (1940), but also that combining psychotherapeutic approaches with physical treatments was, as the film Physical Treatment (1957) asserts, a necessary and effective approach for patients. Furthermore, in extreme cases where less invasive physical treatments would not be effective in managing mental distress, medical experts in the film Psychosurgery and Shock Treatment (1959) argued that psychosurgery was a potential option for patients. The only film that did not focus on using physical intervention as an option for patients was Faces of Depression (1958), where depression was medicalized, but treatment focused on psychological therapies. All these films take a highly medicalized approach, as evidenced in the use of technical language and medical settings, such as doctors’ offices and operating rooms, to dramatize the discussion. The dichotomy of “normal” and “abnormal” was a commonly used frame of reference in the films’ dialogues, in which, for example, hopelessness, being catatonic, compulsive behaviour, hysteria, and manic excitement were deemed pathological. At the same time, images of patients exhibiting mental illnesses – such as the scene from Recent Modifications of Convulsive Shock Therapy (1941) in which a young, White woman is pacing in a small room, throwing paper around, and laughing while alone – illustrated the medical condition being discussed. Several of the films also provided diagrams and images of the disease (Ulcer at Work, 1957) or demonstrated how to prepare patients for treatment (Mentally Ill: Psychosurgery and Shock Treatment, 1959) and then administer treatments such as injections or electroconvulsive therapy (Recent Modifications of Convulsive Shock Therapy, 1941).

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The visual images are an effective tool for education and also lend legitimacy and credibility to the practices and procedures by presenting them as a science, complete with scenes of medical textbooks and explicit images of surgery in progress. Meertens (2001) notes that psychiatry and psychology were seeking to extend their influence into the public sphere during the post-war period through an ongoing process of professionalization. While it is not always clear who the intended audiences of these films were because, arguably, they could have been used to train medical professionals as well as to highlight approaches to managing mental health issues for the general public, the films focused on problems and treatment for “serious” mental illnesses and offered the starkest example of a didactic approach. More than in the other films in this sample, the contrast between doctors as experts in white coats, and patients as passive recipients of treatment, was a common image throughout these films. In three of the films the theme of institutionalization was presented as an important option to help treat people with mental health problems. The emphasis on providing a caring and supportive environment for patients to heal was evident, although what constitutes a supportive institutional environment varies. Mental Hospital (1953) showcased a “modern mental institution, a city in itself, complete with every facility for effective treatment,” that adults with mental health illnesses could utilize to seek the help they needed. Scenes demonstrating the process of being admitted, evaluation of the patient’s condition, and treatments available were used to demystify the institution. Images show adults with a variety of deteriorating mental health conditions being admitted to the hospital and then being seen as happy and well as a result of their stay there. Institutionalization is very positively portrayed in this film, with the narrator pointing out the “favourable environment and human comforts” of the institution, along with the “atmosphere of security and calm” that allows patients “to live quietly during their period of reorientation in which they learn how to achieve a better adjustment to the world outside.” In contrast to Mental Hospital (1953), the films Jean Vanier Opens First L’Arche House (1965) and Warrendale (1967) highlight the merits of a decentralized, community-based, non-hospital setting. In particular, L’Arche houses separated people with mental disabilities from the mentally ill, and they were at the forefront of providing community-based treatment facilities. Both films depict care facilities that attempt to provide “a family atmosphere,” particularly for children and youth with mental health problems or mental disabilities, where doctors work alongside psychologists and social workers. In one film segment Jean Vanier points out that “youngsters are

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vegetating in institutions” and that L’Arche houses are superior for providing housing and employment for young adults who have been released from institutions (Jean Vanier Opens First L’Arche House, 1965). Both films also put forward the view that individuals need to be able to express themselves freely in a safe environment in order to thrive. Phelan, Link, Stueve, and Pescosolido (2000) note that public attitudes in the 1950s were “suffused with negative stereotypes, fear and rejection” of people with mental illnesses (p. 189). They argue that these attitudes about people with mental illnesses also extended to the professionals who treated them (Phelan et. al., 2000). The film Warrendale (1967), in particular, may have been an attempt not only to demonstrate that community-based care facilities are a legitimate, necessary, and humane option to help “sick” people become “well” again, but also to counter the negative attitudes about people with mental and emotional illnesses. Authority, Diagnosis, Causes, and Symptoms As our quantitative analysis revealed, the voices of authority, or those who could make authoritative diagnoses of mental health or illness, were all White, middle-class experts and professionals. In the project films they included psychiatrists, psychologists, classroom teachers and principals, nurses and family physicians, social workers, and community workers. However, the post-war discourse on collaboration and cooperation among the various authorities who dealt with adults and children exhibiting mental distress or deviant behaviour had a democratic ring that was belied by the gendered, hierarchical ordering of the various professions. Within the “psy-” complex, the White, middle-class men in the “psy-” professions were clearly ensconced at the top of the “hierarchy of credibility” (Becker, 1967, p. 241).7 For instance, in Faces of Depression (1958), a film aimed primarily at helping general physicians to recognize how depression underlies many physical complaints, a psychiatrist dressed in a suit and tie and sitting behind a desk speaks directly and authoritatively to the “lesser” professionals about the causes and symptoms of this particular mental disorder. Likewise, the films show how the growing influence of medical, scientific approaches to deviance shifted the role of law enforcement professionals from one that emphasized the punishment and deterrence of “criminal” youth to one that promoted education and prevention. Police went into classrooms to educate children and youth about stranger danger (for example, Boys Beware, 1961) and increasingly acted as gatekeepers, referring youth who seemed to be pre-delinquent or in

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mental distress to the non-legal professionals working in the expanding post-war system of juvenile and family courts and youth guidance clinics (Chunn, 1992; Gleason, 1997; Low, 2003). All of the professionals and experts shared a consensus that their mandate was to help foster good, nuclear, middle-class families in order to “normalize the ideal” (Gleason, 1997) of the traditional nuclear unit, which was seen as the key to social integration and stability (Adams, 1997). As we stated earlier, the normal family was premised on a heterosexual marital relationship and a sexual or gendered division of labour. Husbands and fathers protected and provided economically for their dependent wives and children, while wives and mothers carried out the unpaid work of social reproduction – “wifework,” “motherwork,” and “housework” (Luxton, Rosenberg, & Arat-Koc, 1990, p. 13) – including the socialization of children into normative masculinity and femininity. For their part, children were expected to assume the role of dependents. This included not acting like adults by engaging in under-age drinking, sex, or paid employment, as well as refraining from using bad language or viewing or attending obscene entertainments (Adams, 1997). The idealized nuclear family organized around separate spheres had been viewed as the norm in Canada since the nineteenth century, with periodic eruptions of concern that it was under threat (Chunn, 1992). Thus, the 1940s “crisis of the family” marked yet another period of anxiety in the wake of a world war that had seen many family breadwinners killed or physically and mentally incapacitated, large numbers of wives and mothers working outside the home, and children receiving inadequate socialization and supervision. Like their earlier counterparts, the post–Second World War politicians, policymakers, professionals, and experts, among others, all concurred that the nuclear family ideal had to be shored up even when the nuclear unit in question was broken or dysfunctional (Adams, 1997; Gleason, 1997). These assumptions underpin the diagnoses and explanations of deviant behaviour that were offered by the authoritative sources in the educational films analysed. For example, the professionals and experts in the documentaries clearly took for granted the normative expectations that virtually everyone in society can marry and wants to marry and that everyone is or could be heterosexual. At first glance, It Takes All Kinds (1950) seems to promote respect for diversity in the selection of a mate, emphasizing that most people can find a suitable partner if they set emotion aside and accept the other person as he or she really is. As the narrator tells viewers, “when you marry, you must live with a person, not a dream.” However, there is

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no acknowledgment in the film that one might choose not to marry or could be happier without marriage. To the contrary, the film implies that if individuals are willing to accept less than “perfection” in a mate, they can have “a relatively happy life,” a stance that perhaps reflected the prevailing anxiety about the need to stem the high rate of family break-down during and after the Second World War. Similarly, films about “pedophiles” and “homosexuals” increasingly portrayed them as mentally ill and potentially treatable, but never questioned the underlying assumption that heterosexuality was the only normal sexual orientation (for example, Dangerous Stranger, 1950; The Strange Ones, 1963). As previously noted, although a poor social environment with deviant peers, lack of recreational resources, and exposure to unregulated media (with, for example, obscene language and entertainments) was presented as an important cause of deviant behaviour in our sample of films, over time these sociological explanations were less dominant than individual-deficit explanations. Moreover, the focus on healthy families led to an emphasis on individual personality disorders that were the result of unrealistic expectations (Snap Out of It, 1951), boredom (The Empty Life, 1961), and the stress and inner conflict (Ulcer at Work, 1957) generated by dysfunctional or broken nuclear families. In many of the films that we analysed, defective families in which parents and step-parents failed to fulfil their sex- or gender-specific roles were viewed as the major source of deviant behaviour. The film Age 13 (1955), for instance, begins with the narrator informing viewers that thirteen-yearold Andrew is grief-stricken by the death of his biological mother. He hates her for dying and leaving him in the care of his emotionally distant stepfather. The latter is not a cruel man, but, having no biological children of his own, he “just didn’t understand” what Andrew was feeling, and cared more for his cat than his stepson. He also meets another woman who moves in with him, leaving Andrew even more neglected and alone. As a result of his “pathological” family situation, Andrew starts down the path of escalating, deviant behaviour – stealing from his stepfather and at school, skipping school, threatening other students with his stepfather’s gun, and experiencing homicidal feelings towards his stepfather. Eventually, after he runs away and comes to the attention of juvenile authorities, his school counsellor secures a referral to a woman psychologist who begins to help him work through his emotional devastation and reconstruct his personality. Another “defective family” scenario in our project films is the spousalor parental-role reversal in which the wife or mother is depicted as overbearing and the husband or father as henpecked. In Boy with a Knife (1956)

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viewers observe an unhappy home in which a domineering stepmother openly differentiates between her “good” biological son, and Jerry, her increasingly “deviant” stepson. Jerry’s father does not challenge her when she makes disparaging comparisons such as, “He’s your son, not mine … Our son turned out all right,” which suggests that he puts his wife ahead of his own son. Receiving no appropriate socialization at home, Jerry starts to carry a switch-blade knife and hang out with other boys from problematic homes, “rowdy kids” for whom “destruction and violence [is] their only outlet.” Whereas the boy in Age 13 was presumably saved from a delinquent future through individual talk therapy with a “psy-” professional, the boy with a knife is rescued by a group social worker who observes his “dangerous seething hostility” and sets out to counteract it by moving the boy and his troubled peers towards appealing, conformity-building activities in their own clubhouse. When Jerry’s stepmother announces that she wants him out of the club, his father finally stands up for him, stating firmly, “From now on everyone in my family is heard.” The apparent normalization of his family is marked symbolically when Jerry gives up his knife to Bud, the group worker and narrator who tells viewers that now “you knew that there was hope in the future.” We also noted the gendered and racialized aspects of diagnoses and explanations of mental distress presented in our film sample. The pervasive portrayal of dysfunctional family relationships as a major cause of deviant behaviour is not even-handed. Perhaps because they are seen as primary socializers of their children, mothers are more frequently represented as key contributors to the mental distress of their children than are fathers, and their poor relationships with their children are often depicted as a reflection of the way their own mothers brought them up (see Angry Boy, 1951). Moreover, the henpecked husband and father is considered arguably less blameworthy than the domineering, controlling mother or stepmother when children, especially boys, begin to exhibit deviant tendencies. The depiction of a mother or stepmother as the most powerful family member and as a source of potential dysfunction tells us a lot about the film-makers’ “preferred” meanings (Hall, 1993). Although our data do not support generalized claims, we can say that the producers of the films in our sample did not challenge the prevailing assumptions that normal families operate on the basis of consensus, with no fundamental conflicts among members; that as long as members play their assigned gender and agerelated roles, the family will be healthy; and that the main task for parents is to be on the alert for any signs that their children are deviating from the norm (Chunn, 1992; Gleason, 1999a). What is absent in these films

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is any consideration of power differentials. Far from being all-powerful, in real life even White, middle-class homemakers were in a tenuous position because of their assigned role as the economic dependents of their husbands. The ideology of separate spheres generated clear gender and class differentials between wives and husbands. Women were relegated to the unpaid work of social reproduction by virtue of their gender, and they were dependent on their husbands for a middle-class existence. Gender and race can also intersect to disqualify the motherhood skills of entire groups. Our sample contains only one short television segment that speaks to this issue (A New Future, 1955); it was produced by the CBC, Canada’s national public broadcaster, and focuses on the benefits of residential schools. The segment implies that Native Canadians per se either cannot or will not provide a healthy nuclear-family environment for the socialization of their children and that therefore the state must do it for them. This tells us a great deal about the colonial project and dominant conceptions of inclusion and exclusion at the time. Normality, equated with homogeneity and adherence to the normalized ideal, was to be achieved through either educational or overtly coercive techniques of normalization. Heterogeneity, the greatest threat to social order and the status quo, was to be actively discouraged (Brock, 2003). Consequences and Solutions In the same way that lack of attention to physical well-being can result in the deterioration of one’s overall health, the films in our project made it clear that the consequences of not addressing or of mismanaging mental health problems would be equally dire. In order to educate the public about taking responsibility for their mental health, the films highlighted the repercussions of ignoring these problems. Since they were largely directed at White, heterosexual, middle-class individuals, the films virtually ignored the mental health issues among, for example, racialized or gay and lesbian communities. We surmise that the promotion of good mental health during the period of the making of our films was quite uneven. Although it is not directly evident in the films, the scholarly literature on mental health during this period suggests that it was likely that White working- and middleclass communities received positive attention from authorities in the form of education, whereas other communities (racialized, sexualized) received negative attention, such as institutionalization and forced treatment. The project films document how a variety of individual and social problems such as juvenile delinquency and mental or physical illnesses would

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result if individuals did not seek help or treatment for their mental distress. Given the influence of the mental hygiene movement during this period, fears of people becoming more abnormal were prevalent. For example, not seeking medical attention could result in the continued deterioration of symptoms or of one’s overall mental health (Mental Hospital, 1953; Symptoms in Schizophrenia, 1940). It could also lead to continued suffering, resulting in the desire to harm oneself or others (Faces of Depression, 1958; Physical Treatment, 1957), and it could end in a “life spent in futility and frustration” (The Empty Life, 1961). Conflict and the break-down of relationships at home and at work were cited numerous times as potential hazards, with unhappiness overwhelming the individual (It Takes All Kinds, 1950; Jealousy, 1954). In extreme cases death could result. For example, in the film Ulcer at Work (1957) the viewer is shown how Steve’s colleague does not address the emotional causes of his ulcer, and consequently he dies. According to Besley (2002), such excesses, exaggerations, and distortions were not uncommon in mental health films, because they could be considered “forms of social engineering, preventative medicine and cultural indoctrination rolled into one” (p. 427). As we noted earlier, youth in particular were key targets of mental health education because prevention was portrayed as an important strategy for sorting out “difficult” young people without relying on overt coercion. Fear of social chaos in the form of juvenile delinquency, crime, and violence was highlighted in the films as a reason for intervening or “saving” youth from slipping further in a “negative direction” (Boy with a Knife, 1956). Avoiding dangerous situations was also part of the prevention program, and young boys were strongly advised in many of the films to avoid strangers and homosexuals; otherwise they might find themselves kidnapped or disappeared if they did not obey the rules and conform (The Dangerous Stranger,” 1950). Films such as Age 13, Angry Boy, and Boy with a Knife also demonstrated the obsession with ensuring that young men adhered to the Anglo, middle-class family values espoused by those same films, which claimed that young men were prone to alienation and deviancy if they were not adequately socialized. For mental hygiene professionals, stabilizing youth during their adolescence was a priority because they were the “rising generation” (Comacchio, 2002), and a whole range of professionals and lay people were expected by the state to assume a central role in supervising and preventing the emergence of illnesses or “defects” in youth. Moreover, as our analysis highlights, priority was clearly given to the well-being of boys, with no specific reference to girls. Although girls were visually present in some of the films, they were seldom the focus of

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the film, and thus they were largely invisible in the presentation of mental health concerns around youth. The films also mentioned broader social repercussions, and they reinforced the message that the harms resulting from mental distress had community impacts as well. In the film A Chance to Play (1950) a direct link is made between access to recreational facilities and the prevention of social illnesses or pathologies. We are told that “though recreation alone will not prevent delinquency, it does help to maintain the moral and physical health of the community” (A Chance to Play, 1950). Furthermore, institutionalization was a legitimate option for preventing social disorder if individuals were unable to manage their mental illness (Age 13, 1955), if they became a danger to the community (Physical Treatment, 1957), or if they became too difficult to manage (Warrendale, 1967) and could not “function in society” (Psychosurgery and Shock Treatment, 1959). In Wastage of Human Resources (1947) the social implications of not addressing emotional and mental health issues are clearly articulated: confining people in institutions is antithetical to a healthy, vibrant society. The narrator notes that “these people lost their lives, and the world lost their skill, their artistry and their services” (Wastage of Human Resources, 1947). In their highlighting of the consequences of not treating mental health problems we can clearly see that the preoccupation with guarding the overall well-being of citizens (largely understood as White and middle class) was a central factor behind the production of these films. The efforts to guide people towards making “good” choices for their mental health was as much about education as it was a means to transmit messages about socially acceptable cultural values. During the period of our study, people with mental health problems were not socially accepted, and this may have prevented many from seeking the necessary treatments they needed. As Trute and Loewen (1978) acknowledge, despite a variety of educational efforts, the public’s attitude about “the mentally ill” remained (and still remains) one of “denial, isolation and insulation of mental illness” (p. 80). At the same time, the expansion of psychiatry and psychology also meant that there were now many more medical professionals seeking to help alleviate mental distress, but such help could only be used if individuals understood the necessity of seeking treatment and support. To that end, the educational films helped to justify the presence of the “psy-” professions by manufacturing patients who needed their help. Depending on one’s condition, the films in our study offered a variety of solutions or treatment options. However, all these options were set in a context of rigid beliefs about what was normal or abnormal. Thus, the proposed solutions emphasized the language of normality along with the

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benefits that would emerge from obtaining the appropriate treatment to return to what was a narrowly defined conception of a healthy life. With regard to solutions, the films provided both individual and social recommendations. Individual solutions included having a positive attitude, following the doctor’s advice, not bottling up problems or emotions, and obtaining the necessary medical procedures. The advice was dispensed in a didactic fashion, typically with a narrator or an authority figure instructing a patient or a concerned party. For example, in Attitudes and Health (1949) the doctor tells a boy that his sister would feel much better if she were “to get the facts, make a plan in relation to the facts, and carry out the plan.” This advice is repeated three times throughout the short film to reinforce the message about how to adopt a healthier attitude. Many of the proposed social solutions in the films centred around ensuring that resources and treatment facilities were in place to provide care and attention (A New Future, 1955; Jean Vanier Opens First L’Arche House, 1965; Warrendale, 1967) or that a positive social environment was being fostered (Mental Hospital, 1953). Recognition of the role of the environment in mental illness during the early 1950s was evident in several films that offered both individual and social solutions to mental health recovery. In It Takes All Kinds (1950) the audience is told to “be realistic, know yourself and the other person, and accept them for who they are,” and the narrator also notes that “personality is fashioned in part by the environment in which you develop.” Gold (1988) observes that this was a period of optimism and innovation in the mental health field, resulting in numerous social welfare initiatives and legislation. The film A Chance to Play (1950) is the best exemplar in our sample of this approach. Yet, while a supportive social environment was important, many of the films indicated that taking individual responsibility for good mental health was vital, and, overall, individual solutions were more prevalent than social solutions in our sample – an indication that, increasingly, problems of mental distress were being individualized. Representations of Madness: Continuity and Change We view our exploratory study as a modest contribution to knowledge and as providing a jumping-off point for future researchers with an interest in media portrayals of madness. The findings tell us something about the intended audiences of these educational films and about the preferred meanings and messages of the film-makers, but nothing about the ways in which post–Second World War audiences reacted to them. However,

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following Stuart Hall (1993), we are probably safe in assuming that the impact was heterogeneous, that most viewers at the time did not contest the common-sense assumptions about madness that underpinned the films, and that only a few may have countered the preferred meanings of the film-makers with other non-critical perspectives or have openly challenged the mainstream depictions of mental illness. Still, there is a larger question of whether historical analyses of media representations of madness have any relevance in the contemporary world. We want to suggest that they do, primarily because current representations of madness in public culture and the educational media are continuous with, as well as different from, those in the films we have analysed in this chapter. If nothing else, examining historical continuities is a reminder that current perspectives on and responses to madness may not be as progressive or advanced as their adherents often maintain. The continuities between then and now include, first, the dominance of “psy-” perspectives that are based on fixed notions of conformity and deviance, and the unquestioned assumption that “psy-” experts and related professionals can do what they claim to be able to do – apply science to the diagnosis, treatment, and prevention of a wide range of human emotions and behaviours. The positivist assumption that humans can be studied objectively in the same way as the natural and physical worlds has been vigorously contested. Critiques of positivism by feminists and other critical scholars emphasize that humans are not objects, and to treat them as such is to transform social relations of gender, race, class, and sexual orientation into free-floating variables devoid of any historical and cultural context. A second continuity is the media emphasis on the provision of health and mental health education and on encouragement for people to be proactive about their health, to engage in self-diagnosis for a lengthy list of disorders or syndromes, and to seek advice and treatment from experts if they exhibit symptoms. In contemporary Canadian society the neoliberal discourses of risk and choice are more dominant than the voices of paternalism that characterized the welfare state, but the idea remains strong that individuals can be educated, or educate themselves, to become good citizens who do not question the status quo (Rose, 1998). Third, in both the post-war era and today we see a media focus on children and an emphasis on the need to produce future conforming citizens by ensuring that children are protected from harm rather than allowed to become perpetrators of harm to others. Finally, despite the emergence of feminist and other critical approaches to madness since the 1970s, the most authoritative “psy-” voices remain more or less the same today as they were in the post–Second World

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War era. Although psychologists may have supplanted psychiatrists in many areas of the “psy-” complex, White, middle-class men still sit at the apex of the “hierarchy of credibility” (Becker, 1967, p. 241) both in life and in the mainstream media. Nonetheless, we are not arguing that the dominant media constructions and representations of madness during the post-war period were identical to contemporary conceptions and representations. One of the biggest differences between then and now is the transformation of the broader context in which madness is defined and represented. During the period of our study (1940–69) we see an expanding welfare state and a growing consensus that social supports such as health care and education were needed to help level the playing field for historically disadvantaged or marginalized individuals and groups (Guest, 1997; Struthers, 1994). “Psy-” approaches to madness based on the medical model were dominant, but they were also softened by an acknowledgment of the state’s role in producing healthy citizens. In contrast, we now see the impact of an ongoing assault on the welfare state that began in the 1970s: namely, the consolidation of a neoliberal state and the suppression of “the social” that was encapsulated in Margaret Thatcher’s oft-quoted assertion that “there’s no such thing as society” (as cited in Harvey, 2005, p. 25). “Psy-” approaches to madness still dominate, but they are hardened by the replacement of the social with ideas drawn from biogenetic perspectives on madness that have facilitated the resurrection of eugenics in another guise. The past four decades have witnessed an unparalleled increase in the number of identified mental illnesses and personality disorders, as well as, unsurprisingly, the number of people who receive a “psy-” diagnosis, a phenomenon that can be likened to the syndromization of everyday life (Whitaker, 2002, 2010). Physical interventions in the human brain and neurological system, and the revival of electroconvulsive therapy, coexist with new gene and drug “therapies” created by the ever-expanding pharmaceutical industry (Fabris, 2011; Healy, 2012). While these developments point to the hegemony and impenetrability of the “psy-” complex, they are also, arguably, creating greater opportunities and spaces than ever before to challenge the status quo. Canadian universities are beginning to establish departments and centres for Mad studies and critical disability studies. A growing body of research is documenting the unscientific underpinnings of the DSM and the need for intersectional analyses of madness (Cermele, Daniels, & Anderson, 2001). Psychiatric survivors and advocates are organizing Mad Pride movements to work for social justice (LeFrançois, Menzies, & Reaume, 2013). And like their predecessors

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during the 1960s and early 1970s, some “psy-” professionals who are concerned about the dramatic expansion of the “psy-” complex are increasingly contesting the status quo (Burman, Aitken, & Alldred, 1996; Healy, 2012). Notably, the use of media to present alternate views of madness is becoming a key focus for mounting challenges to the “psy-” complex. Advocates are developing websites and blogs,8 producing documentary films (Selling Sickness [Fiske & Scott, 2004]; The Inmates are Running the Asylum: Stories from the MPA, 2013), and placing greater emphasis on representing the diversity among psychiatrized people, as well as the commonalities. Overall, then, our film project suggests that, by illuminating continuities as well as differences between past and present, historical studies can make useful contributions to the contemporary struggles to deconstruct the commonsense images of Mad people in mainstream media, especially visual media. Likewise, our project findings point to the value of intersectional analyses in illuminating who matters and who does not matter in the “psy-” complex and, more generally, in the “matrix of domination.” Appendix 12.1: List of Documentary Films Symptoms in Schizophrenia (1940) Recent Modifications of Convulsive Shock Therapy (1941) Wastage of Human Resources (1947) Attitudes and Health (1949) A Chance to Play (1950) Dangerous Stranger (1950) It Takes All Kinds (1950) Angry Boy (1951) Snap Out of It (1951) Mental Health (Keeping Mentally Fit) (1952) Mental Hospital (1953) Jealousy (1954) Age 13 (1955) A New Future (1955) Boy with a Knife (1956) Physical Treatment (1957) Say No to Strangers (1957) Ulcer at Work (1957) Faces of Depression (1958) Mentally Ill: Psychosurgery and Shock Treatment (1959) Boys Beware (1961)

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The Empty Life (1961) Evaluating Criminal Responsibility (1962) The Strange Ones (1963) Jean Vanier Opens First L’Arche House (1965) Warrendale (1967) Censored (1968) Homosexuality an “Illness” (1969)

NOTES 1 With respect to terminology, we use the terms mental health, mental illness, and mentally ill when they are used in the films that we have analysed or by authors who are quoted. Otherwise we use alternative terms, including madness, persons in mental distress, psychiatrized persons, and psychiatric survivors. 2 The DSM is compiled and disseminated by the American Psychiatric Association. It is “the standard classification of mental disorders used by mental health professionals in the United States” (retrieved from the APA website on 22 October 2013). The fifth edition of the DSM was released at the annual meeting of the APA in May 2013. It should be noted that the DSM is not founded on professional consensus. DSM-5 generated internal as well as external critique both before and after its release. 3 Our search terms were addiction, homosexuality, illicit drugs, madness, medicine and health, mental hygiene, mental illness, psychiatry/psychology, sex education, sexually transmitted diseases, social issues, and substance abuse. We did not use truncated versions of these words. 4 See appendix 12.1 for a chronological list of the films in our sample. 5 There were only a small number of inconsistencies in the coding process. They were resolved by one of the principal researchers who had coded the film, by reviewing the film again to determine where the points of difference arose and making a final decision about coding. 6 The sexuality of girls was also of concern because of their future role as mothers. For example, Girls Beware (1961), a film that is not in our sample, focused on the tragic consequences, including rape, “social diseases,” pregnancy, and murder, that could befall girls if they went out with boys who were too old for them or if they got into cars with boys or men whom they did not know. 7 Howard Becker (1967, pp. 241–2) argued that “in any system of ranked groups, participants take it as given that members of the highest group have

358  Wendy Chan and Dorothy E. Chunn the right to define the way things really are … By refusing to accept the hierarchy of credibility, we express disrespect for the entire established order.” 8 See, for example, the History of Madness website, http://www.history ofmadness.ca. REFERENCES Adams, M.L. (1997). The trouble with normal: Postwar youth and the making of heterosexuality. Toronto: University of Toronto Press. Becker, H.S. (1967). Whose side are we on? Social Problems, 14(3), 239–47. http://dx.doi.org/10.2307/799147 Besley, T. (2002). Social education and mental hygiene: Foucault, disciplinary technologies and the moral constitution of youth. Educational Philosophy and Theory, 34(4), 419–33. http://dx.doi.org/10.1111/j.1469-5812.2002.tb00517.x Bohaker, H., & Iacovetta, F. (2009). Making Aboriginal people “immigrants too”: A comparison of citizenship programs for newcomers and Indigenous peoples in postwar Canada. Canadian Historical Review, 90(3), 427–62. http:// dx.doi.org/10.3138/chr.90.3.427 Brock, D. (2003). Making normal: Social regulation in Canada. Toronto: Thomson Nelson. Burman, E., Aitken, G., & Alldred, P. (1996). Psychology discourse practice: From regulation to resistance. London: Taylor & Francis. Cermele, J., Daniels, S., & Anderson, K.L. (2001). Defining normal: Constructions of race and gender in the DSM-IV casebook. Feminism & Psychology, 11(2), 229–47. http://dx.doi.org/10.1177/0959353501011002011 Chenier, E. (2008). Strangers in our midst: Sexual deviancy in post-war Ontario. Toronto: University of Toronto Press. Chenier, E. (2012). The natural order of disorder: Pedophilia, stranger danger and the normalizing family. Sexuality & Culture, 16(2), 172–86. http://dx.doi .org/10.1007/s12119-011-9116-z Chunn, D. (1992). From punishment to doing good: Family courts and socialized justice in Ontario, 1880–1940. Toronto: University of Toronto Press. Collins, P.H. (1990/2000). Black feminist thought: Knowledge, consciousness, and the politics of empowerment. New York: Routledge. Comacchio, C. (1994). Beneath the “sentimental veil”: Families and family history in Canada. Labour, 33(Spring), 279–302. http://dx.doi.org/10.2307/25143797 Comacchio, C. (2002). The rising generation: Laying claim to the health of adolescents in English Canada, 1920–70. Canadian Bulletin of Medical History, 19(1), 139–78. Medline:11958194 http://dx.doi.org/10.3138/cbmh.19.1.139

Madness in the Media  359 Crenshaw, K. (1989). Demarginalizing the intersection of race and sex: A Black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics. University of Chicago Legal Forum, 1989, 139–67. Drescher, J. (2012). The removal of homosexuality from the DSM: Its impact on today’s marriage equality debate. Journal of Gay & Lesbian Mental Health, 16(2), 124–35. http://dx.doi.org/10.1080/19359705.2012.653255 Druick, Z. (2007). Projecting Canada: Government policy and documentary film at the National Film Board of Canada. Montreal: McGill-Queen’s University Press. Fabris, E. (2011). Tranquil prisons: Chemical incarceration under community treatment orders. Toronto: University of Toronto Press. Fiske, P. (Producer), & Scott, C. (Director). (2004). Selling Sickness [Television documentary]. Presented by Film Finance Corporation Australia. Brooklyn, NY: First Run/Icarus Films. Fleming, M. (1985). Images of madness: The portrayal of insanity in the feature film. Madison, NJ: Fairleigh Dickinson University Press. Gleason, M. (1997). Psychology and the construction of the “normal” family in postwar Canada, 1945–60. Canadian Historical Review, 78(3), 442–77. http://dx.doi.org/10.3138/CHR.78.3.442 Gleason, M. (1999a). Normalizing the ideal: Psychology, schooling, and the family in postwar Canada. Toronto: University of Toronto Press. Gleason, M. (1999b). “They have a bad effect”: Crime comics and the hegemony of the middle class in postwar Canada. In J.A. Lent (Ed.), Pulp demons: International dimensions of the postwar anti-comics campaign (pp. 129–54). Madison, NJ: Fairleigh Dickinson University Press. Gold, N. (1988). Mental health in Canada, 1947–1959. Canadian Social Work Review, 5, 206–23. Guest, D. (1997). The emergence of social security in Canada (3rd ed.). Vancouver: UBC Press. Hall, S. (1993). Encoding, decoding. In S. During (Ed.), The cultural studies reader (pp. 90–103). London: Routledge. Hall, S., & Jefferson, T. (Eds.). (1976). Resistance through rituals: Youth subcultures in post-war Britain. London: Hutchinson. Harper, S. (2009). Madness, power and the media: Class, gender and race in popular representations of mental distress. London: Palgrave Macmillan. http://dx.doi .org/10.1057/9780230249509 Harvey, D. (2005). A brief history of neoliberalism. New York: Oxford University Press. Healy, D. (2012). Pharmageddon. Berkeley: University of California Press.

360  Wendy Chan and Dorothy E. Chunn Hogarth, D. (2001). The other documentary tradition: Early radio documentaries in Canada. Historical Journal of Film. Radio and Television, 21(2), 123–35. http://dx.doi.org/10.1080/01439680120051479 Iacovetta, F. (2000). The sexual politics of moral citizenship and containing “dangerous” foreign men in Cold War Canada, 1950s–1960s. Histoire Sociale / Social History, 33(66), 361–89. Medline:16850565. Retrieved from http://hssh .journals.yorku.ca/index.php/hssh/article/view/4571 Iacovetta, F. (2006). Gatekeepers: Reshaping immigrant lives in cold war Canada. Toronto: Between the Lines. Jacoby, A. (1954). Mental health films for the ministry. Pastoral Psychology, 4(10), 45–66. http://dx.doi.org/10.1007/BF01839001 Kinsman, G. (1987). The regulation of desire: Sexuality in Canada. Montreal: Black Rose Books. Kittrie, N. (1971). The right to be different: Deviance and enforced therapy. Baltimore, MD: John Hopkins Press. Kuhn, A. (1985). The power of the image: Essays on representation and sexuality. London: Routledge & Kegan Paul. Kuhn, A. (1988). Cinema, censorship and sexuality, 1909–1925. London: Routledge. LeFrançois, B.A., Menzies, R., & Reaume, G. (Eds.). (2013). Mad matters: A critical reader in Canadian Mad studies. Toronto: Canadian Scholars Press. Low, B.J. (2003). “The new generation”: Mental hygiene and the portrayals of children by the National Film Board of Canada, 1946–1967. History of Education Quarterly, 43(4), 540–70. http://dx.doi.org/10.1111/j.1748-5959.2003 .tb00134.x Luxton, M., Rosenberg, H., & Arat-Koc, S. (1990). Through the kitchen window: The politics of home and family. Toronto: Garamond. MacLennan, D. (1987, Summer). Beyond the asylum: Professionalization and the mental hygiene movement in Canada, 1914–1928. Canadian Bulletin of Medical History, 4(1), 7–23. Medline:11621295 May, L. (1980). Screening out the past: The birth of mass culture and the motion picture industry. New York: Oxford University Press. McLaren, A. (1990). Our own master race: Eugenics in Canada, 1885–1945. Toronto: McClelland & Stewart. Meertens, A. (2001). The “New Eugenics”: Psychiatry and mental health in postWorld War II Canada (Master’s thesis). McMaster University, Hamilton, Ontario. Muncie, J., McLaughlin, E., & Langan, M. (Eds.). (1996). Criminological perspectives: A reader. London: Sage.

Madness in the Media  361 Pfohl, S. (1994). Images of deviance and social control: A sociological history. New York: McGraw-Hill. Phelan, J., Link, B., Stueve, A., & Pescosolido, B. (2000). Public conceptions of mental illness in 1950 and 1996: What is mental illness and is it to be feared? Journal of Health and Social Behavior, 41(2), 188–207. http://dx.doi.org /10.2307/2676305 Roberge, G. (1960). The National Film Board of Canada. A.L.A. Bulletin, 54(4), 301–2. Rose, N. (1990). Governing the soul: The shaping of the private self. New York: Routledge. Rose, N. (1998). Governing risky individuals: The role of psychiatry in new regimes of control. Psychiatry, Psychology and Law, 5(2), 177–95. http://dx.doi .org/10.1080/13218719809524933 Schlesinger, P., Dobash, R.P., & Weaver, C. (1992). Women viewing violence. London: BFI Publishing. Schubart, R. (1995). From desire to deconstruction: Horror films and audience reactions. In D. Kidd-Hewitt & R. Osborne (Eds.), Crime and the media: The post-modern spectacle (pp. 219–42). London: Pluto Press. Struthers, J. (1994). The limits of affluence: Welfare in Ontario, 1920–1970. Toronto: University of Toronto Press. Stuart, H. (2006). Media portrayal of mental illness and its treatments: What effect does it have on people with mental illness? CNS Drugs, 20(2), 99–106. Medline:16478286 http://dx.doi.org/10.2165/00023210-200620020-00002 Trute, B., & Loewen, A. (1978). Public attitude toward the mentally ill as a function of prior personal experience. Social Psychiatry. Sozialpsychiatrie. Psychiatrie Sociale, 13(2), 79–84. http://dx.doi.org/10.1007/BF00583864 Wahl, O.F. (1995). Media madness: Public images of mental illness. New Brunswick, NJ: Rutgers University Press. Whitaker, R. (2002). Mad in America: Bad science, bad medicine, and the enduring mistreatment of the mentally ill. Cambridge, MA: Perseus Pub. Whitaker, R. (2010). Anatomy of an epidemic: Magic bullets, psychiatric drugs, and the astonishing rise of mental illness in America. New York: Crown Publishers. Zimmerman, J.N. (2003). People like ourselves: Portrayals of mental illness in the movies. Landham, MD: Scarecrow Press.

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PART FIVE Refashioning Research for Social Justice Praxis

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13 Ethics, Research, and Advocacy: The Experiences of the NAOMI Patients Association in Vancouver’s Downtown Eastside s u s a n b oy d , d av e m u r r ay , a n d n a o m i pat i e n t s a s s o c i at i o n

Introduction CAUTION This may have the ability to attain? The path to freedom is there, if one chooses. The tools were not given readily and the road isn’t clear. Please give us a compass, a clear day, and a home. NAOMI, she was a gift of freedom, a taste, but she didn’t give me her number!!! (S., cis male NPA member)

The above poem was written by a former participant in the North Ameri­ can Opiate Medication Initiative (NAOMI), the first clinical trial of heroin-­ assisted treatment in the Downtown Eastside of Vancouver, British Columbia, Canada. The participant later became a member of the NAOMI Patients Association (NPA). The poem expresses the freedom that the participant experienced while part of the clinical trial. It also points to his dismay when the clinical trial ended and a permanent heroin-assisted treatment program had not been established. The NPA, located in Vancouver’s Downtown Eastside neighbourhood, is an independent group that formed almost three years after the NAOMI heroin-assisted treatment trial had ended. When patients exited the NAOMI trial, they were denied the medicine that had proved effective for them. The NPA began organizing former trial participants to support one another and to advocate for continued treatment. However,

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the association’s purpose quickly expanded to include original research and more. In this chapter we highlight the ways in which the NPA in the Downtown Eastside is part of a larger social movement that is pushing the boundaries of academic and mainstream understandings of drug use, treatment, and policy directions. We draw on the brainstorming sessions and writing workshops conducted by the NPA in the fall of 2011. In the first section of the chapter is a brief discussion about the social justice movement to change drug policy. The next section discusses the Downtown Eastside and ethical considerations. We then turn to the four areas of work by the NPA, including details of the group’s formation and their research results, advocacy, and recommendations for better drugtrial ethics, using the example of the group’s efforts to improve conditions within a new trial, SALOME. The chapter concludes with a discussion of ongoing advocacy efforts by the NPA, which changed its name to SALOME/NAOMI Association of Patients (SNAP) in 2013, as it strives towards social justice for its members and others who may be negatively affected by drug research, treatment, and policy. Drug Prohibition and Its Failure The emergence of a group like the NPA springs from a long history of the unjust treatment of those in Canada who use criminalized drugs. More than a century ago, in 1908, Canada passed the Opium Act with little parliamentary debate. A number of scholars argue that Canada’s first narcotic legislation was shaped by race, class, and gender fears rather than pharmacological evidence of harm, in order to support the regulation of opium (N. Boyd, 1984; S. Boyd, 2015; Comack, 1986; Giffen, Endicott, & Lambert, 1991). Within a few years, law-abiding individuals who had used these substances legally became criminals. Meanwhile, doctors were stripped of their right to prescribe narcotics for drug maintenance purposes to anyone who was addicted. Over time, the Royal Canadian Mounted Police (RCMP) became both enforcers of Canada’s new drug laws and primary knowledge producers about criminalized drugs and the people who used them. Thus, law enforcement played a significant role in shaping drug policy in Canada (Carstairs, 2005; Giffen et al., 1991; Nolan & Kenny, 2003). Harsh prison sanctions, rather than treatment, became the norm, and those labelled criminal addicts in Canada faced cold turkey in a prison cell. From 1928 to the early 1970s the RCMP’s division of narcotic control maintained case files for known “Addicts.” These files contained detailed information, including police and court records and correspondence with doctors (Carstairs, 2005;

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Giffen et al., 1991). Later, psychiatric knowledge also became instrumental in supporting the status quo of a punitive system. Rather than challenge the Division of Narcotic Control and the RCMP, psychiatry represented criminal addicts as doubly deviant – criminal and pathological – and as best treated in secure prison units (Stevenson, Lingley, Trasov, & Stansfield, 1956). However, as the medical knowledge of drug addiction grew, methadone maintenance programs were eventually established in some urban areas of Canada in the late 1950s and the 1960s. Still, since their inception, these maintenance programs have been compromised by rigid rules, shifts in policy, and ideologies that continue to represent patients as deviant. Although methadone is beneficial for some long-time opioid users, it clearly does not work for everyone, and retention is poor (Carter & MacPherson, 2013; Luce & Strike, 2011; Reist, 2011). Thus, heroin-assisted treatment continues to be advocated for some chronic opioid users (Strang, Groshkova, & Metrebian, 2012) as a more ethical and just option. For this reason, heroin-assisted treatment (HAT) became an area of greater interest among researchers seeking better ways to treat some chronic opioid users (Strang et al., 2012). The benefits of HAT are backed by a plethora of international studies demonstrating that it is safe and effective for these users (Strang et al., 2012). In Vancouver advocates felt that conventional treatments, such as methadone maintenance, and abstinence from drug use should not be the only treatments available to improve health. The NAOMI HAT clinical trial (2005–8) sought to test whether HAT was an effective treatment for some patients in Canada. In January 2011, participants who had taken part in the trial decided to form the NPA to support one another directly and also to advocate for a permanent HAT program. At the very least, they demanded that HAT trials should transition into permanent programs, as they have done in every other country, rather than abandon patients at the end of the trial without support. Their efforts marked a new point in Canada’s drug policy history: the NPA transformed former HAT patients and research subjects into knowledge producers and social justice advocates. Social Justice Movement for More Ethical Drug Policies In order to understand the many strands of the NPA’s work for ethical policy, it is vital to understand the global social justice movement to change prohibitionist drug policy and its reliance on criminal law. In Canada the first contemporary challenges to prohibitionist drug policy emerged in the 1950s in Vancouver, BC, in relation to heroin addiction, and in the 1960s

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and 1970s nationally in relation to cannabis use (Martel, 2006). However, it was not until 1981, with the establishment of the first drug users union, Junkiebond, in Rotterdam, the Netherlands, that heroin users formally came together to advocate for more ethical drug policy. Junkiebond sought change at both the local and the national levels by demonstrating against coercive treatment and establishing the first needle exchange in the Netherlands in 1984 (Friedman et al., 2007). Later, similar peerbased, drug-user organizations that demanded ethical services, treatments, and an end to drug prohibition were established in the United Kingdom, Australia, Europe, Canada, and other nations. In Canada one neighbourhood in particular became the site of many forms of contestation of the drug prohibition’s punitive framework: Down­ town Eastside in Vancouver, a diverse community and Canada’s poorest urban neighbourhood. It has a visible street scene, and homes there, for many people, consist of single-room-occupancy establishments. The street scene is directly related to gentrification and cutbacks at the federal, provincial, and local levels, which have led to poverty and a lack of social housing and private space (Culhane, 2011; Pedersen & Swanson, 2010). For women, the neighbourhood is the site of much violence, often linked to everyday life but also to the sex trade; poor and Indigenous women are most affected (Bennett, Eby, Govender, & Pacey, 2012; Bungay, Johnson, Varcoe, & Boyd, 2010). Negative outcomes of drug prohibition – police profiling and the criminalization of heroin, cocaine, and other drugs – are played out on the streets daily, rather than behind closed doors. Thus, owing to their visibility, the poor and marginalized people in the Downtown Eastside are more vulnerable to arrest, imprisonment, and occasionally drug-related violence (S. Boyd, 2015; Carter & MacPherson, 2013; Oscapella & Canadian Drug Policy Coalition Policy Working Group, 2012) – an unethical and harmful outcome. However, it would be a mistake to only describe the neighbourhood in negative terms. It has also long been the home to many families, friends, and cultural institutions and the site of a number of resistance movements highlighting issues such as gentrification and the lack of affordable housing, violence against women, drug policy, and police brutality (Bennett et al., 2012; Boyd, MacPherson, & Osborn, 2009; Howard et al., 2002; Pedersen & Swanson, 2010; VANDU, 2013). Activists in the Downtown Eastside continue to strive for improvement of the conditions of people living in the area and to advocate for structural change. The neighbourhood also has a thriving artistic community that hosts plays, poetry readings, storytelling, art shows, films, music events, and annual cultural events.

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In the mid-1990s activists came together in the Downtown Eastside to form a social justice movement for change in drug policy (Boyd et al., 2009). They demanded an end to punitive drug prohibition and campaigned for the provision of social and health supports, including more harm-­reduction services, such as a safer injection site and heroin-assisted treatment. They sought recognition and action to stem the public health emergency in the neighbourhood, which included alarming rates of drug overdose, as well as transmission of the human immunodeficiency virus (HIV) and the hepatitis C virus. Canada’s first drug users union, the Vancouver Area Net­work of Drug Users (VANDU), emerged in 1997 from this activism (Boyd et al., 2009). In response to a public health emergency in the Downtown Eastside in 1997, harm-reduction services in the neighbourhood did increase. Harm reduction seeks to reduce the harms associated with the use of drugs (both legal and criminalized) and to offer practical, non-judgmental services in which abstinence is not primary, but one option among many. Owing to the advocacy of VANDU and other key organizations and individuals, such as Bud Osborn, in 2001 the City of Vancouver recommended the establishment of safer injection sites and other harm-reduction services, such as HAT (Boyd et al., 2009). In 2005 the first HAT clinical trial, NAOMI, opened its doors in the Downtown Eastside. The Emergence of NAOMI Patients Association All NPA members were once research subjects in the NAOMI HAT trial. As mentioned previously, NAOMI was a ground-breaking clinical trial that tested whether HAT could lead to benefit for the people suffering from chronic opiate addictions who had not benefited from other treatments. Similar to earlier clinical trials outside of Canada, the NAOMI findings demonstrated that HAT was a safe and effective treatment that improved physical and psychological health among participants (NAOMI Study Team, 2008). Other improvements were also observed, including the decreased use of illicit “street” heroin, reduced criminal activity, and the spending of less money on illegal drugs. At that time, the Canadian NAOMI trial was the only heroin-assisted study that failed to continue offering HAT to its participants after the study had ended (SALOME, 2012b). This occurred despite evidence suggesting that continued HAT treatment is beneficial and that ongoing involvement by “experiential” drug users is essential in order to develop ethical drug policy. For example, the 2005 publication Nothing about Us without Us: Greater,

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Meaningful Involvement of People Who Use Illegal Drugs; A Public Health, Ethical, and Human Rights Imperative, by the Canadian HIV/AIDS Legal Network (2005), is a manifesto demanding that experiential users be invited to collaborate at all stages of research and program development. In 2011, VANDU also developed ethical guidelines for researchers who sought to work with the organization. The World Health Organization (WHO) and UNAIDS’s 2011 report Ethical Engagement of People Who Inject Drugs in HIV Prevention Trials make similar recommendations, including that the research subjects of clinical trials be provided with continued treatment at the end of the trial if the medicine or treatment is found to be effective. In fact, as early as 2006, Dan Small and Ernest Drucker wrote about these issues in relation to NAOMI. They noted that there was a large body of evidence demonstrating the effectiveness of HAT. They also noted that NAOMI failed to provide access to a permanent HAT program after patients exited the trial (even when the results of the trial were positive). They also questioned participants’ consent under duress (Small & Drucker, 2006). Responding to this failure and the needs of some participants who had been research subjects in NAOMI, Dave Murray established the NAOMI Patients Association in 2011, almost three years after the HAT trial had ended. Murray saw many NAOMI participants struggling after they exited the trial; thus, he sought to provide a place to offer them support. He and other NPA members established a group with a set of goals that are outlined in the following mission statement (Boyd & NPA, 2013): We are a unique group of former NAOMI research participants dedicated to: • Support for each other • Advocacy • Educating peers and the public • Personal and political empowerment • Advising future studies (heroin and other drugs) and permanent programs • Improvements in consent and ethics • The right to a stable life and to improvement in quality of life

NPA’s goal is to have alternative and permanent public treatments and programs, including HAT programs. These goals demonstrate the group’s commitment to ethical change in drug policy. Below, we discuss in detail the four ways in which these goals have been put into action by the association: member support, social research, advocacy, and the formulation of policy recommendations.

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Member Support From the beginning, the NPA was intended to help members. The group of (men and women) meets on Saturdays in the common meeting room at the VANDU rental space in the Downtown Eastside. Ten to forty members attend each meeting, and men outnumber women, reflecting the NAOMI study’s population. All of the members are on social assistance or disability benefits. Many have poor health, the majority live in single-room-­occupancy units or social housing in the area, and some are homeless. Because NPA has no formal outside funding, VANDU’s support has been essential. VANDU provides a safe place for NPA members to meet, small stipends for member participation, and representation on the VANDU board. NPA and VANDU are also members of provincial, national, and international organizations that advocate for the rights of people who use criminalized drugs, such as the BC-Yukon Association of Drug War Survivors, the Canadian Association of People Who Use Drugs (CAPUD), and the International Network of People Who Use Drugs (INPUD).

Research for Social Change In May 2011 the NPA decided to undertake its own research about members’ experiences as NAOMI research participants. NPA members met with co-author Susan Boyd in March 2011 and invited her to work with them. After much discussion about community-based research for social change (see Carroll, 2004) they decided to conduct qualitative research consisting of focus groups, individual interviews, brainstorming sessions, and writing workshops with NPA members. The NPA members also planned to co-author a report based on the research and their experiences (see NPA & Boyd, 2012). Below, we draw from the brainstorming sessions and writing workshops. In addition, we include other writing pieces that were submitted at NPA meetings from April to November 2011. At the NPA writing workshops, which were held during the group’s weekly meetings, members wrote poems and short essays about their lives. Sandy Cameron’s poem “Telling Stories” was adopted by the NPA to guide its research process (Cameron, 2013). The NPA writing workshops were modelled after other ongoing workshops in the neighbourhood. Many organizations in the Downtown Eastside, including VANDU, have conducted writing workshops so that the experiences of residents are heard and shared in and outside of the

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area. These workshops are also political practices that bring to light people’s activism and personal struggles, including their fight for social justice. n pa w r i t i n g w o r k s h o p s

In the writing workshops members were given a pen and paper. Workshop leaders explained to participants that any form of writing was acceptable (poetry, story, one line, etc.) and that participation was voluntary. The NPA group members surprised even themselves, and a proliferation of stories emerged. wa i t i n g , c r e at i v i t y , f r i e n d s h i p , e v e ry d ay l i f e

A number of NPA members wrote about their childhood and the human condition, often with a focus on the need for connection and self-expression. Untitled essay When I close my eyes I see a young boy with a fishing pole walking the booms on the lake. He’s surrounded by mountains, all around is clear clean water and most of all there’s LIFE all around. The water and air is busy with beings with a single purpose. That’s the point, they have a purpose. All my life I’ve wondered what my purpose was/ is. All my life I’ve tried everything I could to find out what my purpose is. I start out with my emotions on high then when I realize that what I’m doing isn’t it. I crash hard. Self-realization means that we have been consciously connected with our source of being. Once we have made this connection, then nothing can go wrong. No one can ask another to be healed but he can let himself be healed, and thus offer the other what he has received. Who can bestow upon another what he does not have? And who can share what he denies himself ? That which is injurious, loses its capacity to harm. When it is brought into the light. (L., cis male NPA member) Peaceful Sunshine Peaceful Sunshine Darkened Skies. Cloudless Sundays in July’s Days. The Sun so hot While the water so cold. Just to cool down is a wondrous way to pass the time away.

Ethics, Research, and Advocacy  373 One day at a time or until we have peace and happiness as well all should have with Every Sound with every Speech with everyone Listening to me all in tune all in time to only Bring out the Best in All of Us. (R., cis male NPA member)

Other members combined personal insights with accounts of the confines of conventional drug treatment, such as methadone maintenance. A Day in the Life The sun is shining. I’m going to the beach. There’s families here and the waves are awesome. It smells like my Nova Scotia home. Seaside odours, fish & chips, sail boats in the harbour and tankers going to trade all over the world. Oh no! I’m not feeling well, all of a sudden my nose is running, my bones are aching. It’s the liquid hand-cuffs. Methadone. I forgot because the sun was shining, and I felt free. But I’m not. It was only a dream. (D., cis female NPA member)

In Canada, and especially in the Downtown Eastside, drug use is gendered. For example, marginalized women in the neighbourhood who consume crack cocaine have less access to health care and harm-reduction services (Bungay et al., 2010). Another NPA member wrote about the conditions of her life as an adult woman living in the Downtown Eastside (DTES) for fifteen years. She writes about the impact of using criminalized drugs in this space and the effects of the prohibitionist policy: From my heart I have been a “resident” in the DTES for 15 years now and still every day I am in some way or other shocked, surprised, stunned or confused by something I either see, hear, or experience personally. Not all bad! Please don’t misunderstand – a lot of interesting, beautiful and yes sometimes flat out great things have gone on over these 15 years or so. One thing however stands out far above everything and that is how so many of us still have our “humanity” intact. Most of us have been lied to, robbed, beaten up, ripped off, blamed wrongfully, accused of, given credit for or not given credit for all sorts of stuff. Yet, here we are – still saying “Hi, how are you?’ – sharing whatever we can, trusting the next “guy” and yes – trying to get that 1 hoot of hoots. For myself, dope has somehow become less and less important – probably because it has been less and less good dope. My down habit seems to be less (amount-wise) as time goes by.

374  Susan Boyd, Dave Murray, and NAOMI Patients Association Maybe it has something to do with losing “friends” to dope or dope-related circumstances – who really knows? By the end of today (God forbid) there could be 1 less of us here. The survival instinct and skills we have acquired are amazing. We seem to be a bunch of “energizer bunnies.” I know most of us are physical survivors of massive amounts of sugar – even though the majority of us are seriously underweight. We live on the stuff. It really should be illegal too. Just joking. Joining another important survival skill we need. At the beginning, middle and end of each day, I find myself just shaking my head – usually thinking to myself what the fuck are we doing. I am reminded of a dog chasing its tail. Wow it hurts when you catch it! But usually you never do. The best I can do is to keep carrying on as best I can, trying to keep my “human” self intact. (C., cis female NPA member)

The writings that follow continue along the theme of friendships that have developed over time, loss, and living in the Downtown Eastside. They also highlight the lives of marginalized women in the neighbourhood, and the violence experienced by many; poor, racialized, and Indigenous women are vulnerable to legal and social discrimination, “structural and “every day” violence,” health problems, drug arrests, prison time, child apprehension, and stigma (S. Boyd, 2015; Bungay et al., 2010; Robertson & Culhane, 2005). Dear Sophie, Of lives and times How often do friends leave? The immediate intensity of sadness for myself and we find ourselves to face and or to cope with the horrific news of the loss of dear others that were close to an individual whose broken few and the toughness of the street wears even on our expression day to day. We’ll miss you Sophie. With love, (M., cis male NPA member) Bathroom Floor Once again I find myself alone, contemplating life while sitting on brick red tiles that make the bathroom floor. Since the

Ethics, Research, and Advocacy  375 only thing that I am wearing is a t-shirt and g-string, the cold tiles feel so great Pressed against my flushed and hot skin. Thinking, I realize that all through my life that one constant and comforting thing is the hundreds of hours that I have spent in this tiny room shutting Out every thing. The place where plans are developed, decisions made and sins confessed. Also, where I cry, laugh and apply the makeup that hides the purple/blue marks that cover most of my body, the red lines caused from tears running down my cheeks non-stop. Or the true feelings that I spend so much time trying to hide, the one place that I can be my true self and not feel the sharp hot sting of his slap. I, like so many women, have learned that hiding is the way to live. Following every word of the man that we think loves us and for that love we live like prisoners locked away. (M., cis female NPA member)1

The NPA members also wrote about their experiences as subjects of clinical research. It is important to understand that for a short while unadulterated legal heroin was available to NAOMI research subjects in a clinical setting. During that time, outside of the clinical study, heroin was not legally available elsewhere in Canada. Although heroin can be bought illegally, it is expensive, adulterated, and only available from the illegal market. Thus, users are vulnerable to arrest and to possible drug overdose

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because the quality is never certain. For many NPA members, the NAOMI clinical trial provided a respite, and they saw their lives improve (Boyd & NPA, 2013). NAOMI participants had to visit the clinic three times a day at designated time slots – morning, afternoon, and evening – to receive their medication. They were observed prior to, during, and following their dose. Thus, the participants spent a lot of their day with each other at the clinic. Whereas the focus groups highlighted some of the positive experiences of NPA members in the NAOMI trial (see Boyd & NPA, 2013), some NPA members chose to write about the negative outcome of being a NAOMI research subject. Memories at the Corners of My Mind The way we were. NAOMI Emotion = ANGER Angry at myself, sometimes reminded me of being in school, being disruptive questioning authority. (D., cis male NPA member) Untitled Poem Still down here can’t remember how many years had lots of laughs and lots of tears not sure how or when it will end know all kinds of people can’t call 1 a real friend maybe tomorrow maybe next year but when it is over don’t shed a tear ’cause the misery is over. I hope . . .

(K., cis male NPA member)

NAOMI (Trials?) How can I (we) be the lucky one? Chosen as 1st grade “A,” fresh, unquestioning meat? To be lucky enough, chosen 1st to receive, FREE grade “A” dope from places and parts unknown? Did I care? Should I care? If I didn’t care, who could care? Then: No one (seemed) to care. Now: EVERYONE (seems) to care! Raising new issues, NEVER thought of then, only thought of now?

Ethics, Research, and Advocacy  377 How can this be? Were we: so far gone, all that mattered was . . . No! Cost . . . No!! work . . . No!!! MORE DRUGS (given FREE) Back to the Grind, just like I’ve never left! So . . . Why, did I even bother to be a “trial” RAT 4 NAOMI? To be left hanging, with No rope! Thanks NAOMI. (J., cis female NPA member)

Others wrote about NPA meetings. NPA members expressed concern in their writing about the lack of an adequate exit strategy for NAOMI participants – that a permanent HAT program was not established following the clinical trial – and about the realities they faced after exiting the study: having to buy criminalized drugs once again, being vulnerable on the street, and having to participate in drug treatment programs that had already failed them (which had been one of the criteria for being a research subject in the NAOMI clinical trial in the first place). Untitled Essay I’m not sure what I’m suppose to write here, since I just occurred on the scene here late and everyone is already writing their letters I suppose you’d call this for lack of a better word. So here I sit writing. Also just got news that a girl we all knew just passed away, she was a junkie. I suppose nobody knows why she died exactly only that she did. I suppose life’s like that, you’re here one minute, gone the next. What’s it all for, what’s it all about, who knows? All I know for sure is one day we’ll all find out. (M., cis male NPA member) Untitled Essay This is my very first meeting that I decided to attend. I had completely forgotten that VANDU held a committee meeting every Saturday. The meeting time is usually held at the hours of 12:00 – 1:00 and $5.00 is awarded to people who decide to attend. (J., cis female NPA member) NICE PEOPLE USE DRUGS

(D., cis male NPA member)

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Advocacy The NPA recognizes the importance of reaching out to drug-user and harm-reduction groups, researchers, and policymakers. Its goal is to effect change so that HAT becomes a permanent program that fits the needs of people who use it; thus, they recommend advocacy on many fronts. At the end of 2011 the NPA research project, including the writing components noted earlier, neared completion; the NPA then co-authored a report to communicate its findings: NAOMI Research Survivors: Experiences and Recommendations (NPA & Boyd, 2012). They also communicated the results of their research at a number of public events in the Downtown Eastside during the winter of 2011–12, including at VANDU, and at national and international conferences. In the following years the association continued to present locally, nationally, and internationally; thus, the experiences of NPA members – being the first people in contemporary North America to receive HAT – and NPA’s recommendations for future studies and programs were heard by a wide range of audiences.

Recommendations for the Drug Trial SALOME The very existence of the NPA (and VANDU) shows that the people who use criminalized drugs in Vancouver’s Downtown Eastside do not accept their fate without fighting for more ethical drug policy. The decision by former NAOMI trial participants to hold weekly meetings at VANDU after the study had ended was a first step in allowing individuals to support each other and to express themselves and their experience. Their research and advocacy continued to connect members to a social justice movement for greater ethics in drug policy and for an end to drug prohibition. Their most recent advocacy again confirms this connection. At the end of 2012 another major clinical trial began in Vancouver’s Downtown Eastside: the Study to Assess Longer-term Opiate Medication Effectiveness (SALOME) examined whether hydromorphone (Dilaudid) was as beneficial as diacetylmorphine (heroin) for “people suffering from chronic opioid addiction who are not benefiting sufficiently from other treatments” (SALOME, 2012a). SALOME also assessed whether “those effectively treated with these two injectable medications can be successfully switched and retained to the oral formulations of the medications” (SALOME, 2012a). The SALOME website stated that Canada was the only country that terminated HAT following the NAOMI clinical trial even though the treatment showed success. Thus, SALOME researchers stated that they had applied

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“for research funding to continue investigating effectiveness of licensed injectable opioids (the SALOME trial)” (SALOME, 2012b). However, countries around the world have been testing the effectiveness of HAT, not hydromorphone. To test the researchers’ hypothesis, the SALOME trial compared the effectiveness of six months of injectable diacetylmorphine with that of six months of injectable hydromorphone; for select research subjects they also examined the effects of switching from injectable to oral medication after six months of treatment. Using a lottery system, people who registered for the trial and were deemed eligible were contacted. The clinical trial expected that research subjects would participate in the study for one year, followed by a one-month transition period in which they would be encouraged to participate, once again, in conventional treatments, such as methadone maintenance, drug-free treatments, and detox programs (treatments that had proven to be ineffective for these participants) (SALOME, 2012a). As noted earlier, the repeated failure of treatment efforts for participants is in fact part of the criteria for selection of participants in SALOME, as was the case in NAOMI. Similar to the NAOMI trial, SALOME did not include a strategy for creating a permanent HAT program following the study. Prior to SALOME opening its doors, NPA members met with SALOME researchers and provided valuable input from their experiences as NAOMI research subjects. They also shared their recommendations for future HAT trials and maintenance programs (NPA & Boyd, 2012, p. 10). NPA recommended: • that, when experimental drug maintenance programs are over, clients (research subjects), for compassionate reasons, should receive the drug they were on as long as they need it; • an umbrella of support and services, such as housing, and access to medical treatment, all under one roof; • access to welfare workers and Ministry representatives familiar with the area; • access to nutritious food for self and family; • support to move life forward through enrolment in school and trades, as well as family unification; • access to family and criminal lawyers, education/advocacy skills, and advocates; • diverse routes of drug administration for its clients: oral, smoking form, and injection; and finally • that time on site be used to support, educate, and advocate.

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Further, the NPA recommended that all future studies and programs include NPA and other heroin users in the development of the projects and that they should be part of the team from the beginning to the end (Boyd & NPA, 2013). In the future, the NPA would like to see the establishment of HAT programs that are less rigid, less medicalized, and less regulated. The NPA favours HAT models that are social and cultural spaces of inclusion rather than highly medicalized and hierarchal spaces. Although the SALOME researchers put into place some NPA recommendations, the larger issues concerning lack of an exit plan and the setting up of a permanent HAT program were not addressed at that time. This raised many concerns for NPA members. The NPA and other advocates continued to push for change in SALOME’s policy. In 2012 the NPA consulted with a drug-policy lawyer for Pivot Legal Society. The society is a non-profit organization in the Down­town Eastside that strives to “use the law to address the root causes of poverty and social exclusion” (Pivot Legal Society, 2012). By working with Pivot Legal Society and by developing other forms of advocacy, the NPA hoped to change the course of events for SALOME participants and others who would benefit from HAT programs (rather than clinical trials). In 2013 the NPA changed its name to SALOME/NAOMI Association of Patients (SNAP) to reflect its membership better. At that time many members were patients in the new HAT trial, SALOME. In early 2013, SNAP sent a community support letter to Providence Health Care, British Columbia’s health provider, and copied it to a number of prominent players in the SALOME trial and health care in the province. It was endorsed by local residents, as well as by Libby Davies, a Member of Parliament for Vancouver East at that time, and organizations in and outside of the Downtown Eastside. The community letter supported the provision of a permanent HAT program in Vancouver. It asked that SALOME and Providence Health Care immediately provide a more feasible exit strategy for its research participants and a permanent HAT program for them (Boyd & NPA, 2013). Owing to the extensive advocacy efforts on many fronts since late 2012 and early 2013, Providence Health Care has been striving for a more feasible exit strategy for clinical trial patients. For example, in 2013 some physicians who were in attendance at Providence Crosstown Clinic in the Downtown Eastside where SALOME was conducted submitted requests to Health Canada for special access to injectable heroin for individual patients. In addition, Providence Health Care began looking into other treatment options for SALOME patients exiting the clinical trial. In early 2013, patients who

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were to exit the trial were kept in an interim program at Crosstown Clinic, and Providence Health Care began to discuss the possibility of providing oral hydromorphone to some SALOME participants as a treatment option after the trial. By September that year some former SALOME patients were also receiving injections of hydromorphone at Crosstown Clinic. Also in September 2013, the Special Access Program, Health Canada, approved twenty-one HAT applications for former SALOME patients to continue to receive treatment for three months after they exited the trial. However, quickly following this landmark approval the federal government changed the rules of the Special Access Program, and the then health minister, Rona Ambrose, condemned the initial decision. In October 2013 the new rules of the Special Access Program stated that heroin, and other criminalized drugs, could no longer be requested by physicians for their patients, even when drugs had been shown to benefit the patients’ health. Advocates stressed that there was a wealth of studies demonstrating the effectiveness of HAT for chronic opioid users and, at that time, none for Dilaudid (Strang et al., 2012); thus, they argued that it was unethical to withhold HAT from SALOME patients when they exited the clinical trial. On 13 November 2013, five SALOME patients (four being long-time SNAP members), with co-plaintiff Providence Health Care of British Columbia, filed a constitutional challenge in the BC Supreme Court to overturn the federal government’s decision to prevent further Special Access requests for heroin-assisted treatment. They argued that the Special Access Program’s new regulations were unconstitutional and infringed on the Charter Rights of former SALOME patients. In May 2014 Chief Justice Hinkson of the BC Supreme Court granted an injunction for SALOME trial participants, providing an exemption from the new federal Special Access policy that prohibited doctors from prescribing heroin to patients for whom other conventional treatment options had been ineffective. Thus, it was ruled that the SALOME participants, if eligible, should receive HAT from Provi­ dence Health Care physicians until the trial was heard. However, it was not until the end of November 2014 that some former SALOME participants began to receive HAT at Crosstown Clinic. SNAP continues to meet weekly, and January 2015 marked their fouryear anniversary. A celebration honouring their tenacity and activism was held in February that year, attended by SNAP members and their supporters. In September 2016, Health Canada, under the leadership of a Liberalled federal government, announced that the former Special Access Program policy would be reinstated; thus, as this chapter goes to press, Special Access Program requests for HAT can be submitted by physicians on behalf of their

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patients. And in response to this policy shift, the Supreme Court challenge will no longer be heard. Conclusion The SALOME/NAOMI Association of Patients just celebrated its sixthyear anniversary. The association continues to advocate for ethical, socially just drug policy. Along with international, national, and local groups they challenge drug prohibition and its reliance on criminal law and punitive policy. They support efforts to legally regulate all currently criminalized drugs, the establishment of drug policy and services based on human rights, ethical research, and the inclusion and expertise of people who use currently criminalized drugs. SNAP’s immediate goal is to see HAT programs – a proven, safe, and effective treatment – established in Canada; this goal has not yet been accomplished. SNAP also challenges conventional understandings of people who use criminalized drugs, especially those who use heroin. With almost no resources except human effort, the NPA members set out to tell their stories, to conduct social research for social change, to communicate their findings and recommendations, and to be at the table advocating for drug policy reform. SNAP’s motivation is simple: it does not want to see other people suffer from failed prohibitionist drug policy and unethical drug treatment and research practices. SNAP members are part of the fabric of Canadian life; their health, social, economic, and human rights must be considered. SNAP is also part of a global social justice movement to end prohibition and the criminalization and pathologization of people who use criminalized drugs such as heroin. SNAP encourages other groups to advocate for change and to engage in creating their own community-based research to tell their own stories.

NOTE 1 This poem was printed in Megaphone’s Voices of the Street (2010), p. 20. Megaphone is a magazine sold on the streets of Vancouver by homeless and low-income vendors. It is published by the non-profit Street Corner Media Foundation. In 2010 Megaphone launched the Voices of the Street literary issue that focused on the stories of people who live in the Downtown Eastside of Vancouver.

Ethics, Research, and Advocacy  383 REFERENCES Bennett, D., Eby, D., Govender, K., & Pacey, K. (2012). Blueprint for an inquiry: Learning from the failures of the Missing Women’s Commission of Inquiry. Vancouver: B.C. Civil Liberties Association, West Coast Women’s Legal Education and Action Fund, and Pivot Legal Society. Boyd, N. (1984). The origins of Canadian narcotics legislation: The process of criminalization in historical context. Dalhousie Law Journal, 8(1), 102–36. Boyd, S. (2015). From witches to crack moms: Women, drug law, and policy (2nd ed.). Durham, NC: Carolina Academic Press. Boyd, S., MacPherson, D., & Osborn, B. (2009). Raise shit! Social action saving lives. Halifax, NS: Fernwood. Boyd, S., & NAOMI Patients Association (NPA). (2013, 18 April). Yet they failed to do so: Recommendations based on the experiences of NAOMI research survivors and a call for action. Harm Reduction Journal, 10(1), 6. Medline:23594923 http://dx.doi.org/10.1186/1477-7517-10-6 Bungay, V., Johnson, J.L., Varcoe, C., & Boyd, S. (2010, July). Women’s health and use of crack cocaine in context: Structural and “everyday” violence. International Journal on Drug Policy, 21(4), 321–9. Medline:20116989 http:// dx.doi.org/10.1016/j.drugpo.2009.12.008 Cameron, S. (2013, 19 August). Telling stories. Retrieved from http://sandy cameron.vcn.bc.ca/category/poems/ Canadian HIV/AIDS Legal Network. (2005). “Nothing about us without us”: Greater, meaningful involvement of people who use illegal drugs; A public health, ethical, and human rights imperative. Retrieved from http://www.aidslaw.ca/site/ wp-content/uploads/2013/04/Greater+Involvement+-+Bklt+-+Drug+Policy +-+ENG.pdf Carroll, W. (Ed.). (2004). Critical strategies for social research. Toronto: Canadian Scholars Press. Carstairs, C. (2005). Jailed for possession: Illegal drug use, regulation, and power in Canada, 1920–1961. Toronto: University of Toronto Press. Carter, C., & MacPherson, D. (2013). Getting to tomorrow: A report on Canadian drug policy. Vancouver: Canadian Drug Policy Coalition. Comack, E. (1986). We will get some good out of this riot yet: The Canadian state, drug legislation and class conflict. In S. Brickey & E. Comack (Eds.), The social basis of law (pp. 67–89). Toronto: Garamond. Culhane, D. (2011). Stories and plays: Ethnography, performance and ethical engagements. Anthropologica, 53, 257–74. Friedman, S.R., de Jong, W., Rossi, D., Touzé, G., Rockwell, R., Des Jarlais, D.C., & Elovich, R. (2007, March). Harm reduction theory: Users’ culture,

384  Susan Boyd, Dave Murray, and NAOMI Patients Association micro-social Indigenous harm reduction, and the self-organization and outsideorganizing of users’ groups. International Journal on Drug Policy, 18(2), 107–17. Medline:17689353 http://dx.doi.org/10.1016/j.drugpo.2006.11.006 Giffen, P., Endicott, S., & Lambert, S. (1991). Panic and indifference: The politics of Canada’s drug laws. Ottawa: Canadian Centre on Substance Abuse. Howard, T., Jackson, M., Kerr, T., Pacey, K., Richardson, J., & Tyndal, M. (2002). To serve and protect: A report on policing in Vancouver’s Downtown Eastside. Vancouver: Pivot Legal Society. Luce, J., & Strike, C. (2011). A cross-Canada scan of methadone maintenance treatment policy developments. Ottawa: Canadian Executive Council on Addictions. Retrieved from http://www.ceca-cect.ca/pdf/CECA%20MMT %20Policy%20Scan%20April%202011.pdf Martel, M. (2006). Not this time: Canadians, public policy, and the marijuana question, 1961–1975. Toronto: University of Toronto Press. NAOMI Patients Association (NPA), & Boyd, S. (2012). NAOMI research survivors: Experiences and recommendations. Retrieved from http://drugpolicy.ca /2012/03/naomi-research-survivors-experiences-and-recommendations/ NAOMI Study Team. (2008). Reaching the hardest to reach – Treating the hardest-to-treat: Summary of the primary outcomes of the North American Opiate Medication Initiative (NAOMI). Retrieved from http://www.chumontreal.qc.ca /sites/default/files//documents/Media/PDF/081017-resume-resultats-etude.pdf Nolan, P., & Kenny, C. (2003). Cannabis: Report of the Senate Special Committee on Illegal Drugs (abridged ed.). Toronto: University of Toronto Press. Oscapella, E., & Canadian Drug Policy Coalition Policy Working Group. (2012). Changing the frame: A new approach to drug policy in Canada. Retrieved from http://www.drugpolicy.ca Pedersen, W., & Swanson, J. (2010). Community vision for change in Vancouver’s Downtown Eastside. Vancouver: Carnegie Community Action Project. Pivot Legal Society. (2012). After a year on heroin: Is it ethical to terminate? Retrieved from http://atforum.com/2012/06/the-naomi-study-after-a-yearon-heroin-maintenance-is-it-ethical-to-terminate/ Reist, D. (2011). Methadone maintenance treatment in British Columbia, 1996– 2008. Victoria, BC: Centre for Addictions Research of BC. Retrieved from http://www.health.gov.bc.ca/library/publications/year/2010/Methadone _maintenance_treatment_review.pdf Robertson, L., & Culhane, D. (2005). In plain sight: Reflections on life in Downtown Eastside Vancouver. Vancouver: Talonbooks. Small, D., Drucker, E., & Editorial for Harm Reduction Journal. (2006, 2 May). Policy makers ignoring science and scientists ignoring policy: The medical ethical challenges of heroin treatment. Harm Reduction Journal, 3(16). Retrieved

Ethics, Research, and Advocacy  385 from http://harmreductionjournal.biomedcentral.com/articles/10.1186/1477 -7517-3-16 Medline:16670010 http://dx.doi.org/10.1186/1477-7517-3-16 Stevenson, G., Lingley, L., Trasov, G., & Stansfield, H. (1956). Drug addiction in British Columbia: A research survey (Unpublished manuscript). University of British Columbia, Vancouver. Strang, J., Groshkova, T., & Metrebian, N. (2012). New heroin-assisted treatment: Recent evidence and current supervised injectable heroin treatment in Europe and beyond. Luxemburg: European Monitoring Centre for Drugs and Drug Addiction. Study to Assess Longer-term Opiate Medication Effectiveness (SALOME). (2012a). About SALOME. Retrieved from http://www.providencehealthcare .org/salome/about-us.html Study to Assess Longer-term Opiate Medication Effectiveness (SALOME). (2012b). Timeline: From opium to SALOME. Retrieved from http://www .providencehealthcare.org/salome/timeline.html Vancouver Area Network of Drug Users (VANDU). (2013). Timeline. Retrieved from http://www.vandu.org/

14 Using Arts-Based Methods to Create Research Spaces That Encourage Meaningful Dialogue i n d r a n i m a r g o l i n , t e r ry k r u pa , s e a n k i d d , d a r r e l l b u r n h a m , d aw n h e m i n g way , m i c h e l l e pat t e r s o n , a n d d e n i s e z a b k i e w i c z

Introduction In this chapter we argue that arts-based research methods can capture aspects of lived experience that are frequently absent from traditional approaches to the study of mental health and recovery. The arts are a nonverbal vehicle that enables levels of expression that may not be accessible through traditional verbal methods (for example, interviews, questionnaires) and, therefore, provide more depth and nuance around the issues of social location as well as the multiple forms of oppression including gender, age, and racialization. In this way, arts-based methods address the growing critiques of traditional research methodologies that have ignored social location. Research that does not address social location will miss acquiring important knowledge about the recovery process. For example, research focused on recovery-oriented practices among service providers and service institutions typically does not acknowledge that individuals may have different experiences of these services, based on gender, race, social economic status, et cetera. The incorporation of the arts into research is additionally well suited to the requirements of intersectional research because creative engagement allows for tacit, embodied, and complex experiences of exclusion based on intersecting social locations, to be emotionally integrated, understood, and articulated more precisely by research participants. Intersectionality is a prominent theoretical lens brought forth by feminists of colour to understand how identity categories such as gender, age, and race interact and become interdependent, simultaneous forms of oppression (Hulko, 2009; Mehrotra, 2010). Intersectionality aims to name the forms of exclusion that interdependently oppress women for reasons beyond their gender, such as able-bodiedness and class (Crenshaw, 1989).

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Feminist scholars have since developed intersectional methods of research, noting that social research itself often makes invisible the social locations of its subjects by treating groups of people such as women with “mental illness” as homogeneous and disregarding the historical circumstances that cyclically produce unique forms of hardship for marginalized groups (Morris & Bunjun, 2007). Intersectional methods make power relations explicit and attempt to capture multiple axes of oppression and inequality while portraying participants as multidimensional human beings with resiliency, strengths, skills, and talents (Morris & Bunjun, 2007). In this chapter we focus on the intersecting locations of gender, age, and race to assist in filling this gap in the literature. Traditionally, research on mental health and illness among women has focused on topics such as the prevalence of certain disorders or behaviours (for example, suicide) compared to the prevalence for men. Arts-based research is one methodology that can allow greater understanding of women’s lived experience of mental health recovery. Knowles and Cole (2008) broadly defined arts-based research as “the systematic use of the artistic process, the actual making of artistic expressions in all of the different forms of the arts, as a primary way of understanding and examining experience by both researchers and the people that they involve in their studies” (p. 29). As a stand-alone methodology or a methodological enhancement to other approaches (Leavy, 2009a), ABR relocates knowing and being in the world within local, personal, everyday events where people can engage, empathize, and transform their lives. Given the privileging of professional views in the traditional approaches to studying mental health recovery, the relocation of knowledge to the people living with the actual experience is particularly important. Even when the intent is to elicit lived experiences, studies have largely been directed by professionals; they frame the research questions and are bound by traditional research procedures and standards. Thus, the inclusion of people with lived experience of mental health issues is largely predetermined, and the research designs and strategies that identify and elicit their voices are lacking. Miller and Crabtree (2000) referred to the importance of creating “research spaces” that enable both those with lived experiences and researchers to “converse at the wall” or, in other words, to find common ground and language to transform research processes so that they are consistent with human lived experience. Arts-based research has the potential to elicit an authentic understanding of the lived experience of recovery and to give voice to experiences that are not easily expressed in everyday language (Fraser & al Sayah, 2011; McNiff, 2008).

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Next, we outline the critique of current conceptualizations of recovery and review the literature on the application of arts-based research in the mental health field. Our intent is to provide a sense of the way in which this type of research is currently being developed and used, as well as a sense of its contributions to the advancement of knowledge in the mental health field. We then briefly describe the findings of a research project that was conducted by the authors using arts-based research methods to study the recovery experiences of differently positioned women, including younger, older, and racialized women with serious mental illness. Finally, we reflect on the use of arts-based research to date and consider its potential in advancing conceptualizations of recovery that are sensitive to gender and other identities. Recovery The concept of recovery has gained prominence internationally as an organizing vision for mental health service delivery. In Canada, fostering recovery among citizens with mental health problems and mental illness has been identified as one of the key directions of the country’s mental health strategy (Mental Health Commission of Canada, 2012). Emerging largely (though not exclusively) from the voices and narratives of people with lived experience of mental illness, contemporary perspectives on recovery have focused on understanding and enabling the processes by which people come to lead full lives in spite of such illness. Patricia Deegan (1987, 1988, 1996) is often credited with coining the term recovery, and she used her personal story of being diagnosed with schizophrenia to show how recovery is a process that belongs to people with mental illness; it is their struggle to awaken to possibilities, to gain control, to realize their potential, and to imagine and ultimately realize a future with meaning. From this perspective the supports, services, opportunities, and other factors external to individuals are positioned to influence the recovery process. These factors can be enabling and helpful or can act as barriers; even worse, they can become “spirit breakers” (Deegan, 1987) that are more harmful and debilitating than the illness itself. Considerable evidence now exists to show important gender variations related to serious mental illness, suggesting that a gender-based analysis of recovery is warranted. For example, the age of onset of a range of mental illnesses, including depression, bipolar disorder, and schizophrenia, tends to be later for women (Køster, Lajer, Lindhardt, & Rosenbaum, 2008) than

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for men. This has been viewed as a protective factor in that, compared to men, women have more time to establish careers, adult life skills, and relationships without the impact of acute illness. Yet, there is also evidence to suggest that women with serious mental illness are more likely to experience depression and to attempt suicide and that their self-esteem is more compromised despite better overall functional outcomes (Nordentoft et al., 2002; Thorup et al., 2007). Furthermore, the literature shows that, when aspects of social location are taken into account beyond gender, mental illness among women can lead to specific adverse outcomes. For example, women with serious mental illness are more likely to have experiences of coercive sex in the context of poverty and homelessness (Collins, Von Unger, & Armbrister, 2008) and to be victims of adult sexual abuse (Goodman et al., 2001). With regard to the recovery process and heteronormative gendered role performance, Thorup and colleagues (2007) hypothesized that women may place greater demands on themselves to meet social expectations. They suggested that the implicit value placed on autonomy in the recovery process may not adequately address the value that women place on relational dynamics. Schön (2010), meanwhile, suggested that structured gender norms may give women an advantage in the recovery process, enabling them to focus on making meaning of their situation, compared to men, who often focus more on occupational roles and independence. In this chapter we focus primarily on the analysis of gender and its intersection with racialization and age through the lens of arts-based methodologies. Our aim is to promote dialogue around the approaches and practices within recovery that are sensitive to diversity and are attentive to the factors that can produce marginalization and inequities. Review of Arts-Based Research Applied to Mental Health Arts-based research incorporates the artistic or aesthetic elements of creative arts to inform any aspect of social science research, including data collection, analysis, interpretation, and representation (Leavy, 2009b). Imaginative engagement has also been shown to nurture learning and healing (Knill, Levine, & Levine, 2005). Arts-based research includes varied art modalities such as photography, theatre, film and video, mural art, collage art, poetry, storytelling, and dance. This variety of methods can make unique contributions to mental health research; they offer an accessible means for participants to articulate

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experience, they allow a more equitable shift in power dynamics in researcher-participant relationships, and they facilitate dissemination of results to the broader community (Clements, 2012). We conducted a search of mental health, wellness, and recovery literatures that incorporated arts-based methods. We searched CINAHL, PyschInfo, Medline, Summon, Embase, Web of Science, Google, and Google Scholar, using the keywords arts, research, and arts-based research, combined with mental illness, mental disorder, and recovery. Our search was limited to the years 1995 to 2013. Although much of the literature focused on the use of arts as treatment, we found fifteen relevant studies that focused on the use of arts in the research process. These studies are discussed in detail below.

Looking at Lived Experience by Employing Photography Methods Eight of the fifteen studies used photography as a method to access participant experiences. This approach was characterized variously as photo methods, photography, photo elicitation, and “photovoice,” which combines the visual image of photographs with narratives to promote local knowledge and community building (Clements, 2012; Wang, 2006). The prevalence of photography is consistent with a scoping review of seventy-one arts-based health research articles, in which the most widely used method (in twenty-three articles) was photography (Boydell, Gladstone, Volpe, Allemang, & Stasiulis, 2012). In our review, photography was primarily used to explore participants’ lived experiences and meaning-making of recovery as well as to promote recovery-oriented services. The primary rationale provided for using photography was that people with severe mental illness can struggle cognitively to articulate their experiences, and photography provides an effective way of sharing experiences in this context (Erdner, Andersson, Magnusson, & Lützén, 2009; Erdner & Magnusson, 2011). Photography provides access to and a tacit rendering of an overwhelming and hard-to-conceptualize experience (Clements, 2012; Miller & Happell, 2006). Consequently, mental health researchers find photovoice to be an effective means to understand lived experience (Erdner & Magnusson, 2011). A second rationale is that people with mental illness are often marginalized and disempowered (Clements, 2012), and the employment of visual means, such as photovoice, empowers participants by giving them control of the captured imagery; it is then used as relevant knowledge, making them the experts of their own experience. A third rationale is that the photographs evoke emotional responses, which can move policymakers

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to empathize with the needs of individuals in recovery (Fleming, Mahoney, Carlson, & Engebretson, 2009). Photo methods offer a low-skill, low-barrier creative form of engagement for capturing and communicating lived experience. These methods are well suited for the study of inequities because they create new possibilities for participants to respond to research questions. Participants have control over the location and time in which they respond, which inevitably allows them to shape the interpretation of questions. The power differential between researchers and participants is additionally minimized (Miller & Happell, 2006; Romano, McCay, & Boydell, 2012) because, for its meaning to be understood, a photograph requires the voiced articulation of the photographer; participants become the authors of their visual and verbalized narratives. Erdner, Andersson, Magnusson, and Lützén (2009) explored the life views of eight participants diagnosed with serious mental illness, at three day centres. Having reviewed participants’ photographs, along with individual interviews, the authors reported that the use of photographs had enhanced the participants’ capacity to reflect on and converse about their life views. Similarly, Miller and Happell (2006) compared interview-only participants with interview-plus-photography participants to show that, by contemplating their own photographs, the participants were able to locate sources of hope in their lives. Furthermore, Clements (2012) used photovoice in a collaborative participatory action research project to discuss recovery with five people who had lived experience, and one staff member. Findings indicated that photovoice enabled participants to make personal meaning of their experiences in relevant, accessible language (Clements, 2012). Overall, the photo method allowed participants to voice their stories and, in the process, create meanings of recovery. It also enabled researchers to understand more precisely the participants’ internal struggles. Photography may thus be viewed as a useful mechanism within mental health research to create and disseminate local knowledge. Incorporating visual imagery as both data and findings has been increasingly incorporated in mental health research with a view to promoting empathy and dialogue among researchers, community members, service providers, and policymakers (see, for example, Fleming, Mahoney, Carlson, & Engebretson, 2009; Thompson et al., 2008). Both Thompson et al. and Fleming et al. found that participants in recovery felt misunderstood, invisible, and under-valued and suffered from stigma that led to a loss of identity in their personal and professional relationships. The collaborative

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and creative data collection process provided participants an alternative experience in which they reportedly felt that, when they explored research questions through photographs, they were more engaged and comfortable with researchers, they had knowledge to contribute, and they were viewed as individuals (Miller & Happell, 2006; Romano, McCay, & Boydell, 2012). Thompson et al. (2008) did not say whether photovoice achieved its objective of increasing empathy among care professionals. Fleming, et al. (2009), however, found that the incorporation of a photovoice exhibit communicated mental illness in an engaging way that educated, and reduced stigma among, its viewers. Romano, McCay, and Boydell (2012) engaged ten young adults, who had experienced a first episode of schizophrenia, in photographing an object that they believed symbolized their recovery, and then discussing the object’s importance during an in-depth interview. Thematic findings indicated that participants needed time for recovery, that personal interests and goals promoted recovery, and that spirituality was a non-medical support to reclaiming daily life. This coincides with Fleming, Mahoney, Carlson, and Engebretson’s (2009) work in which participants reported the need to discuss existential concerns in their recovery. In a slightly different vein, Bryant, Tibbs, and Clark (2011) undertook a photographic participatory action research study, intended to influence service development, by examining whether social networking was occurring in designated social spaces of a mental health centre. Participant-chosen findings revealed that the social lounge provided a safe space and, in that space, enabled services that fostered social networking. Their collaborative photography project showed that institutional efforts to foster social networks by designing an inviting social space among service users aided in preventing long-term isolation. The implications of these investigations are that recovery-oriented service providers should consider physical spaces that promote social engagement among users, incorporating discussion around spiritual or existential needs and concerns and engaging service users artistically to reclaim a positive sense of self.

Other Arts-Based Research Methods While photography has been the most documented arts-based research method in this context, several other methods have been examined. Parr (2007) facilitated a collaborative film-making process, consisting of twenty film-maker participants (academics and people with mental health problems) from an arts and mental health organization. Employing film-making

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as a form of arts advocacy and consciousness-raising, data collection methods included ethnographic notes taken during the film-making process and the public dissemination of the film. Parr described the process as involving “co-empowerment,” suggesting that both researchers (and their research) and study participants influenced one another. The final document was a thirty-minute piece entitled Recovering Lives: Mental Health, Gardening, and the Arts. Findings revealed that the film-making process was equally important to the film product because the required collaboration, while complex, was effective in levelling the power differential between the two groups. The process also involved negotiation of meaning among group members, which created depth and nuance around the research question. Parr’s film-making process enhanced the understanding of how this creative art form could serve as a source of self-esteem, purpose, and expression for all participants. Notably, this arts-based research method stands out in terms of rigour in that it directly addressed the inherent power differential between participants with lived experience and academics. Language-arts research methods have also been developed. Dent-Brown and Wang (2006) used story-making as a method to assist individuals with mental illness in increasing self-awareness, and to assist therapists in understanding clients’ “internal language.” Participants reportedly felt that the fictional stories they created provided relevant metaphors for their lives, even though they were instructed to create a character unlike themselves. Many participants experienced therapeutic change as they processed personal, emotionally disturbing content and felt proud of their accomplishment. Similar to Parr’s (2007) inquiry, this finding stands in contrast to mental health research that uses traditional interviewing methods that can leave participants reportedly feeling incompetent and devalued. Arts-based researchers have found that creative methods enrich the experience for both themselves and participants and bring greater insight to their focus of inquiry. For example, Vander Kooij (2009) conducted research with participants who wrote songs as part of their music therapy treatment, and found that the process highlighted the tensions in the struggle to move from illness to health. Silver and Reavey (2010), meanwhile, used mixed visual-art techniques to inquire into the experiences of embodiment, beliefs about the self, and self-esteem among males and females diagnosed with body dysmorphic disorder. The incorporation of self-­portraits as a method afforded participants a more distanced view of self and clarified that individuals with the disorder perceived themselves as looking exceptionally more attractive when they were younger than they did at the time of the study. Carless and Douglas (2009) employed poetry with males

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and found that poetic approaches produced a richer understanding of the views of participants with severe mental illness, who may not otherwise produce coherent narratives. One limitation of this work is that analysis or meaning-making of the poetry was not provided. Chung et al. (2006) conducted the only study that could be considered intersectional because it investigated multiple axes of oppression such as mental illness and race. They produced a mixed media event that combined film, a photography exhibit, poetry, and comedy in order to cultivate community dialogue and engagement about depression. This community-based participatory study brought together academics and community members from a wellness group that had been formed to use the arts to communicate with local African Americans about the stigma and treatment of depression. From the outset the researchers identified historical oppression related to race as a critical barrier to effective health communication strategies and to research processes. Thus, the aim of this study was to build on community strength and to identify environmental stressors that exacerbated depressive symptoms. The researchers used both quantitative and qualitative methods to gauge the impact of the different art forms on the audience. Findings showed that the participatory framework allowed for more culturally sensitive and inclusive evaluation methods that involved the input of both the researchers and the community group members. The arts-based research literature we surveyed reveals a promising means to access people’s experiences of mental illness, wellness, and recovery. Furthermore, the artistic methods reviewed enabled research participants to drive the knowledge being constructed. The arts foster a humane, ethical methodological approach in which individuals feel valued as the experts of their own experience. Despite these strengths, arts-based research is still in its infancy compared to other methodologies, and thus the clarity of the process and the rigour of the work needs to be strengthened. Many of the arts-based research articles reviewed did not contextualize the research enough for the reader, viewer, or listener or include a self-reflexive critique of the rigour of the research design. In addition, recalling that the goal of intersectional research methods is to produce knowledge that acknowledges and addresses multiple axes of oppression, only one of the studies directly attended to gender, race, class, and other factors as integral to understanding the experiences of recovery and of disadvantage and inequity in the recovery process. Still, issues related to inequities did emerge in the context of these studies, including, for example, access to good quality treatment. Indeed, arts-based research itself was often viewed as a strategy to reduce power

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differentials between researchers and participants, as well as the impact of mental health disability, specifically the difficulties in communication associated with impairments in cognitive processing. As a means of offering an example of arts-based research that attends to more than one aspect of social identity, we now turn to our own study. Our aim was to advance the understanding of the use of arts-based research methods to access lived experiences of recovery in a Canadian context and to evaluate these methods in order to study intersectionality and social inequities. Studying Recovery Experiences among Women with Serious Mental Illness

Method Our study was conducted at three locations across Canada (Prince George, British Columbia; Kingston, Ontario; Toronto, Ontario). Each site focused on engaging women with serious mental illness, but there were social demographic differences across the locations. One site involved Indigenous and Caucasian older women (N = 7; age range 53–71) with lengthy histories of mental illness who had been living in a small northern city for at least thirty years (Prince George). The second site focused on racialized women (N = 7; age range 31–53) living in a metropolitan urban setting (Toronto). The third site included young Caucasian women (N = 4; age under 25) who had received early intervention for psychosis services in a small city (Kingston). Although there was certainly a degree of diversity across domains in all groups, we sought to find areas of focus in order to locate the narratives better, concentrating particularly on groups that are often neglected and under-represented in the broader literature. While age and race intersect as factors of exclusion for most women at different stages in their lives, we chose to engage women who might identify to a greater extent with these locations as points of marginalization in their lives in order to gain insight into their narratives of how these factors overlapped to limit their life choices and ostracize them. Such methodological triangulation can strengthen analysis in areas where research has tended to overrepresent the experiences of particular groups, for example, middle-aged White men (Patton, 1999). Our plan was to engage a diverse sample that would allow us to study experiences of recovery and to apply an intersectional analysis based on gender, age, and racialization and other identity categories as they emerged. Participants were recruited through existing

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partnerships with consumer-survivor, housing, and mental health organizations. Institutional ethics board approval was obtained from universities or agencies at all participating sites (Queen’s University, University of Northern British Columbia, Centre for Addiction and Mental Health, Activity Centre for Empowerment, Workman Arts). Our research question was, “What are the important moments, people, places, events, activities, and milestones in your recovery?” Over three or four sessions at each site we applied creative, artistic methods to explore this question with participants. The study group with the older women was led by researchers, one having expertise in the arts. However, the group was structured so that group members emerged as leaders and assumed facilitating roles. The other two groups (the racialized women and the young women) were led by a person who had lived experience of mental illness and expertise in the arts. The older women met for three separate three-hour sessions, during which they did individual and group collage, with painting, drawing, and the use of pre-made images, along with reflective writing and guided gesture-and-body-movement work. The group involving racialized women met for three separate three-hour sessions and engaged in a variety of artistic media, including drawing, painting, poetry, collage, letter writing, movement, tableau vivant (that is, where people enact a particular incident or situation while silent and motionless), drama, sound, and voice. The young women did individual collage, also over three separate threehour sessions, which involved a structured technique to prepare canvases and to integrate painting, hobby craft objects, and magazine pictures and text. The data included investigator field notes and audio-recorded and transcribed discussions that focused on participants’ art-making process and products during a debriefing after each art-making session. These debriefings (including a beginning check-in and an ending check-out) were guided by semi-structured interview questions. The data collected through the arts was incorporated to deepen exploration of the ideas caught in the transcribed data. Our data analysis was consistent with the two-pronged, text-based approach to intersectionality proposed by Aylward (2010). This method was chosen for its overt intention to bear light on the complex interplay of structural forces imposed upon women’s identities and the way in which women navigate these forces within their unique contexts. The first prong is premised on the idea that an individual’s experiences of recovery will be based on multiple identities, some grounded in forms of inequity. The second prong focuses on a contextual analysis of these experiences and forms of inequities. In this way our analytic process focused on using a range

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of relevant data to develop a full conceptual understanding of recovery experiences. The process was also consistent with grounded theory. This included, first, becoming familiar with all data (records of verbal dialogue during the creative activities, participant’s comments about the meaning of their artwork, and investigator field notes) and then coding this data line by line; and, second, identifying the relationships between codes (for example, dimensions) and information that cut across multiple codes in a thematic manner, to develop an integrated and conceptual understanding of the data. Thematic analysis was completed at each site by local researchers. Mem­ ber checking, focusing on high-level themes, was conducted at two of the sites (Prince George and Toronto). Member checking did not occur with the younger women who had first onset psychosis, because of the logistical constraints in accessing participants. The research team conducted cross-site analyses that focused on common, cross-cutting themes as well as varying themes.

Findings Across the three sites the experience of recovery was characterized as an overall sense of well-being while being true to the “authentic self.” We identified three common and interconnected themes related to the experience of recovery. The first theme was the reconciling of changes in personal identity in order to experience the self as worthy and accomplished. The second theme was the importance of relationships and the central role of women in caring and family. The third theme was the finding of a place in the world and the fulfilling of meaningful community roles. In addition, the study revealed recovery experiences that were particular to the identities and places of the specific study groups. reconciling changes in personal identity

Participants across sites described the negotiation of new perspectives on personal identity as a response to experiencing the self as being disempowered or compromised. For one young woman, the collage method provided an avenue for demonstrating pride in her lesbian identity. A second struggled with reconciling participation in medical treatments with its negative impact on her weight and body image. For another young woman, art allowed her to show symbolically her ability to live independently from her parents. During the collage-making process she disclosed: “I thought I wasn’t going to be able to move out of my parent’s house for a very long

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time. Ten to twenty years maybe. And then, all of a sudden, as soon as I think that – there I am out on my own already. Living and kicking and being happy.” For the older women, recovery of one’s identity represented survival – survival from life experiences of stigma, loss, and institutionalization – and was expressed as a collective as well as an individual process; for example, “What I really want to stress is we are people first, intelligent, creative, wonderful people. We have a mental illness. We are not a mental illness.” For the racialized women, the response to experiencing a devalued identity was to create a valued and empowered sense of self that reflected the integration of a range of identity components, including gender, race, and illness, as illustrated by the following: I just did a drawing of myself, and I was really focusing on my face and seeing if it could look like me, but it’s not exactly what I look like … and that’s kinda how I feel about my illness. I don’t look like my illness, I don’t feel like my illness, but it’s built these symbols within me … which is why I used an ankh [Egyptian symbol] for everlasting life. Because I don’t look like my illness. I am who I am and I will look like myself again. And the star and the heart [in the drawing] are the calm feelings I have about myself. Sometimes reminds me of a star. you know. I always want to love a part of me. It’s hard because when you get diagnosed, you lose a sense of your identity, and to come to terms with the illness is finding your identity again, accepting that it is part of your cultural background, all the differences. c e n t r a l i t y o f r e l at i o n s h i p s a n d fa m i ly

For the young women, hopes for the future that included an intimate relationship in the context of a happy family life appeared in their artwork. For one member, who was dealing with the reduced custody of her children as she focused on completing her schooling, parenting was represented as a current and important role. Another participant worried that, given her current need to learn to take care of herself, marriage and parenting might not be possible, while a third looked forward to the prospects inherent in her current lesbian relationship. The older women shared stories about being abandoned by husbands and families and about the loss of children. Some women spoke of terrible loss and shame but also of finding hope in solidarity, support, and friendship with others who had also experienced mental illness. A few women spoke about leaving physically and emotionally abusive marriages. What was remarkably clear was that the diagnosis and experience of mental illness had created enormous strife within families. All the older women had experienced excessive weight gain from

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psychiatric medication, which had negatively affected their self-esteem and their partner’s level of attraction to them. Only one of these seven older women reported having received unconditional love and support from her husband and children. For the racialized women, the experiences of personal empowerment and independence that were central to their recovery often conflicted with the values and expectations of family. For some, reconnecting with children and the role of being a mother was a central feature of their recovery. Of greatest importance to all the women was the presence of relationships – core family or community relationships that would accept and nurture their emergent identities and that would respect their capacity as women to contribute meaningfully to the creation of a strong sense of community. finding place and meaningful roles

The racialized women reported valuing education and work as a means to personal achievement and autonomy, as well as being important vehicles for meaningful community participation. The young women linked involvement in school and work to future aspirations for particular careers, which were linked in turn to their desire to create a meaningful and stable home life. The older women described their activities largely in collective activism and advocacy. They noted that gender differences with respect to work, career, and family might make recovery more difficult for men who have been socialized to take on the role of family provider. g r o u p - s p e c i f i c e x p e r i e n c e s o f r e c ov e ry

The young women experiencing a first episode of psychosis used dark- and light-colour shading to symbolize elements of the self that were inconsistent with perceived social expectations of women. Descriptions of personal struggles occurring during the emergence of acute illness were often hidden from others. For example, one young woman noted that she had had thoughts of violence for several years, but that these were not pursued by others, who could not imagine that she could harbour such thoughts. The group members also indicated that while, compared to men, women might be perceived as more open to sharing and asking for help, this was highly individual. This finding reveals the need for an intersectional analysis that does not simply attach, based on gender assumptions, certain behaviours to men and women, such as help seeking, but recognizes the intersecting subjectivities that influence help-seeking behaviour, such as the notions of normalcy with regard to mental health as they interlock with age and gender.

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For the older women with lengthy histories of mental illness, the deprivation and indignities experienced during in-patient psychiatric hospitalizations contributed to the perceived trauma of mental illness. The lived experience of these deprivations and indignities was illustrated poignantly through the arts. Gender-related indignities in hospital included forced disrobing in front of male security guards, with the threat of further coercion, and disregard for sanitation and basic comfort related to menstruation. Activism, expressed in many of their artistic efforts as well as a peer-led consumer survey, became a vehicle for effecting change in these in-patient conditions and a central element of their recovery journeys. The activism and peer-led survey were not a part of this study; however, they occurred concurrently, and participants reported that the involvement in this research had fuelled further energy towards their activist efforts. For instance, the psychiatric in-patient unit was renovated to improve the environmental aesthetics, including lowering the glass wall between patients and staff; the programs, including reinstitution of an arts program; and the menu, which was altered to include a more nutritious diet. For racialized women, the creative arts sparked dialogue about oppression and the loss of power related to mental illness in general, but also specifically within cultures of origin. The women described how their roles could be highly prescribed and required sacrificing personal needs to look after family, in particular male family members; for example, “First it’s her father, then it’s her husband, then after it’s her son. She’s never free, she always looks after family rather than herself ” (Kidd, Virdee, et al., 2014). Discussion The literature review and the research study presented in this chapter emerged from our interest in learning about the potential for intersectional, gender-sensitive research that was offered by arts-based research in the area of mental health recovery. Specifically, we asked if arts-based research could provide a vehicle for gaining an intersectional understanding of the lived experience of recovery among diverse groups of women. We were also interested in learning whether arts-based research could assist in gaining a greater understanding of women’s experiences of the intersecting structural forces that have been known to affect their resilience (Morrow & Weisser, 2012). With regard to the relationship between recovery and identity, our inquiry emphasized a dynamic process of variously exploring, integrating, or rejecting aspects of identity as they interacted with social and cultural influences. Coinciding with Vander Kooij’s (2009) study,

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reconciling changes in those identities in order to experience a cohesive self as worthy and accomplished was a significant aspect of the recovery journey. With regard to the importance of context, we found that the women experienced their multiple identities within particular contexts and that there were identity differences not only across groups but within the groups. Social location in age, and cultural group affiliation, for example, were as important to the experience of recovery as was the length of time with illness. However, even beyond the richer knowledge of identity and context produced using arts-based research, we noted that the specific arts practices employed also lent particular meaning to the study results. Next, we consider this aspect of arts-based approaches to studying recovery.

Arts-Based Research Processes and Gendered Meanings of Recovery Arts educator Eisner (2002) argued that the meaning of content is shaped by, and cannot be separated from, the form in which it is created. Thus, the specific artistic avenues used to understand important events in women’s recovery process formed the type of knowledge they conveyed in their artmaking and reflection processes. For instance, particularly striking across all three sites in the research was the minimal dialogue about treatment and symptoms and the inclusion of the positive growth-promoting aspects of their lives. This stands in sharp contrast to literature governed by illness in which diagnosis, symptoms, and treatment dominate the discussion. Based on our findings, we contend that this difference is a direct result of the artistic media employed to give voice to women’s perspectives in their recovery journeys. The arts evoke passion and encourage a focus on searching for beauty in both the external world around us and the internal world within us (Eisner, 2002). Participants across sites reported feeling connected with other group members and inspired with hope through the arts process. The practice of creating offers female participants the experience of being a creator with agency rather than a powerless bystander (Ellsworth, 1992; Margolin, 2013). Women create new knowledge and images of themselves in the realm of the creative that lives between the known and the not-yet known (Fels & Belliveau, 2008). We used visual practices, collage in particular, in all three sites. Visual art invites the emotional and visceral engagement of researchers, participants, and viewers. The imagery becomes a potent tool of communication that encourages multiple meanings through the inherent symbolic nature of the art (Leavy, 2009a). In keeping with a constructivist epistemology

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(Butler-Kisber & Poldma, 2010), collage is a non-threatening visual form for novice artists to explore concepts and make tacit meaning explicit. Collage has been used in art movements as a form of social resistance to counter the oppressive structures steeped in racist, sexist, and classist ideologies, as well as to counter the modern notion of a single reality of truth (Butler-Kisber, 2008). Collage places multiple, seemingly incongruent, realities (images) side by side and invites people to view the discordance. This provocation has a resistive and transformational capability consistent with feminist and other critical epistemologies with a strong interest in social justice (Leavy, 2009a). In this study, transformation occurred in the collage-making process during which three different groups of women at separate sites were invited into new and intimate dialogue about their emotional experiences. At the site involving young women, for instance, the participants began to offer imagery that they thought might be useful to other group members. This sharing led to deeper discussion about why a particular image reflected or failed to reflect their identities. Davis (2008) claimed that “collage, created from a synthesis of shattered fragments, realized in an emergent, often randomized composition, arrives at meaning in a very different way – accidentally, capriciously, provocatively, tangentially” (p. 250). Other visual arts incorporated into our study, including painting, provided a visual representation of where the racialized women saw themselves in relation to others and how they either connected with or felt disconnected from broader systems. Through visual representation and narration of the meanings of those representations, these women used images such as being trapped within a bubble or being on a boat out on a lake to explore marginality and loneliness. Gesture and improvisational movement practices were also used in the sites involving racialized women and older women. The goal of inner-­ directed movement is to perpetually focus, without interpretive or critical thought, on feeling, sensations, and desires as they spontaneously manifest in bodily movement (Wyman-McGinty, 2007). The movement may be guided by themes and/or structural qualities. The embodied creative process, with its symbolic expression, can sufficiently invite and safely contain feelings while integrating personal narratives and illuminating people’s connections to the external world (Margolin, 2013). Participants are rapidly invited to view themselves as the primary authority on their thinking, feeling, and dancing without knowing ahead of time the forms that their impulses or intuitions might take. This expression of self, which occurs in a safe, accepting atmosphere, invites others to open themselves, and holds great potential for rich and layered responses, in group format, to inquire

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into mental health and recovery (Margolin, 2012). In the group involving older women, movement and gesture were practised as symbols of participants’ recovery experiences. Each participant posed in a position that she felt best presented a picture of the beginning point of her recovery process, followed by a pose that best represented her recovery today. These visual depictions, captured in photography, spoke profoundly to the dichotomy experienced on the journey between illness (often in the psychiatric ward) and recovery. Gestures of illness included covering the face and body with arms and crouching down, which the researchers perceived, and the participants reported, as hiding, shame, and self-soothing. Gestures of health and recovery included large, wide, reaching, bright-eyed postures that the researchers perceived, and the participants reported, as expressions of joy and confidence. The body-movement component of the sessions evoked memories and emotional responses. Although some participants were viscerally transported back to a painful time in their recovery journey, they reported that it felt cathartically necessary to continue the movement experience and ventilate their emotions, even when they were invited to stop. Many participants reported that inquiring into significant aspects of their recovery through dance provided them with “spiritual release” and a sense of “freedom.” While great care and a working knowledge of the emotional connections to the body are necessary to lead inner-directed movement in a research setting, this movement has the potential to synthesize undeveloped insights and bring them to the surface. The art-making process seemed to enhance reflection and provide new insight for participants by creating a safe space in which they could holistically and imaginatively reflect on their experience. In the process of symbolically using keywords and imagery to capture particular ideas, they made new meaning as affective aspects began to emerge. The imagery provided participants with a metaphoric language and a safe container. By making room, through creative means, for expression that is often silenced and oppressed, arts-based research allows reflexivity and reveals how social inequities for female health consumers emerge from an intersection of social factors, including gender, but also age, class, and racialization. Best practice requires that our understandings come directly from lived experience, and lived experienced cannot be understood through rational modes of language alone, such as traditional qualitative interviewing. Embodied and affective experience must be a part of making meaning that captures the ways in which intersecting social locations affect women’s lives. In our study the resulting visual data also assisted researchers in their analysis. The participants’ photographed gestures and visual art pieces were

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integrated to deepen researcher engagement with the data and to foster thematic connections.

Advancing Intersectional Conceptualizations of Recovery The findings from this multi-site study advance the understanding of the recovery experiences of women who have been diagnosed and have received mental health services for serious mental illness. Consistent with the broader scholarship, the recovery experiences of the women participating in the study reflected a process whereby individuals come to understand themselves and to live their lives beyond the confines and limitations of the mental illness. Our findings highlight the relevance of a historical perspective and suggest that recovery experiences of individuals are closely tied to the way in which recovery is understood and institutionalized within the broader community and health systems. For example, all the young women in early intervention programs had received in-patient mental health services, but, unlike the older women, they did not convey their recovery as a process of developing activism in response to long-term and oppressive forms of institutionalization. This understanding was only made possible through an intersectional approach that included age as an important dimension of inquiry. This is not to say that the experiences of young people with mental illness do not include structural experiences of powerlessness and exclusion, but rather that, in contemporary mental health systems where recovery has been embraced as a guiding vision, there is perhaps less likelihood that it will take the form of long-term institutionalization. This is not, however, a point without some complexity, because recovery-oriented­ care is not the only driving factor for deinstitutionalization; economic pressures are also involved, and questions arise about the institutionalizing of community spaces through community treatment orders (Kidd, McKenzie, & Virdee., 2014). In addition, the findings suggest the importance of a life-course perspective on recovery, in which developmental life experiences are recognized within personal experiences of mental illness and recovery. The artistic products and reflections of the younger women were focused on common developmental milestones related to the dreams for their future adult lives, including finishing high school and vocational training, establishing intimate and long-term relationships, and setting up their own homes. These were grounded, however, in very current struggles related to the newness of and lack of familiarity with their illness experiences, with respect to both

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managing the illness and understanding the meaning of these experiences for their future lives. For these younger women the trauma of the illness and the meaning of its implications might be described as rawer and more unprocessed than they were for the older and racialized women. The study also contributes to our understanding of gender-specific experiences of recovery. Findings suggest that gender-based expectations may influence recovery experiences. In the group of young women, for example, the social expectation that women are not prone to aggressive behaviours might help to explain the lack of attention that service providers and others in the social network give to their potential for aggressive thoughts. Dean and colleagues (2007), in their study of aggressive behaviours at entry to first-episode-psychosis treatment, indicated that, although male gender is linked to violence in the general population, the gender gap narrows when focusing on those with serious mental illness. Even among our participants there was surprise at the level of physicality that they could experience in the context of acute mental illness. Another intersection that emerged was that of gender and cultural group expectations. The group of racialized women highlighted that their experiences of creating a meaningful life beyond the illness included negotiating the limitations and constraints posed by the illness, the discrimination within mental health services, and, in addition, the expectations of their cultural networks and families that both defined their primary role as caring for others and controlled their opportunities and resources accordingly. Their recovery narratives in the creative-arts exercises focused on their efforts to rebel against and break free from these constraints. This refusal to be silenced was explicitly linked to recovery from mental illness. The research findings also contribute to our understanding that the disempowerment associated with gender and its intersections can be experienced within treatment settings, particularly tertiary-care treatment settings, which are purported to be places of safety, care, and effective treatment. Participants highlighted, for example, how the rules and procedures related to security and control can be applied without sensitivity to or respect for gender-related experiences of safety and dignity. Our findings are similar to those of Schön (2010), who found that, compared to men, women were more likely to experience in-patient care as coercive and as engendering feelings of helplessness. Recently it has been noted that little attention is paid to developing recovery-oriented care within tertiary-care and in-patient settings (Chen et al., 2013), and this interest is beginning to extend to the need to tailor these services so that they are sensitive to

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individual needs and experiences related to gender, ethnicity, and culture (Battersby & Morrow, 2012). Finally, the study highlights how the central role of women in creating places of family and community is compromised in the context of serious mental illness, an insight that, up to now, has been poorly developed in conceptualizations of recovery. To date, much of the dialogue related to roles and occupations in recovery has focused on work, school, community participation, and financial autonomy. Studies suggest that men in recovery are perhaps disadvantaged because of the expectations placed on them for performance in these domains, both for their own well-being and as family and social contributors (see, for example, Schön, 2010). Yet, for the women in our multi-site study, much of the discourse related to roles, and contributions focused on their sense of themselves as creators of family and community life and on the extent to which these roles and contributions were compromised in the context of serious mental illness. This damage took many forms, including the loss of children and, in some cases, actions to re-engage with adult children. Questions related to the potential for childbearing, parenting, exclusion, and even abandonment by families arose. Where cultural values placed restricting expectations on women’s participation in family, this was magnified in the context of the illness experience. For the women in our study the course of recovery involved an active process of reconciling identity and developing potential within these important and valued social roles. Several limitations to our multi-site study must be considered. Although we engaged distinct populations of women at each site, this study was limited by the lack of attention within the study design and analytic processes to the influence of place on recovery experiences and in particular to the ways in which place intersects with other aspects of identity. Another limitation is that the three groups do not capture the diversity of experience among the women with mental health problems in Canada. Additional limitations were that the young women’s group did not partake of member-checking activities, and some participants in the older women’s group may have experienced enhanced integration of their recovery experience as a result of their activism work rather than of their involvement with this research. Lastly, in the Toronto site the cultural backgrounds of the racialized women who participated were tremendously diverse and may not reflect the even greater forms of diversity that are subsumed under the moniker racialized. The only qualifier to this criticism is that services, mainstream socio-cultural contexts, and the forms of discrimination that these women faced create some

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conditions of commonality. This was reflected in the many commonalities that arose from the participant narratives in the study. It would be beneficial for future work to examine the meanings of recovery with specific ethnic groups in a more in-depth fashion, to include their histories in terms of refugee or immigrant experiences, to consider the types of mental illness faced, and to probe the experiences of race and structural inequalities. Conclusions This research provides introductory evidence in support of the less prominent but evocative and promising arts-based methods, such as collage, tableau vivant, and creative dance, as a means to understand the barriers and the resilience-promoting factors in women’s experiences of recovery. Further, this research illustrates that resilience-promoting factors are at play on both personal and structural levels and are mediated by gender, age, and ethnicity. Arts methods can capture nuanced dimensions of experience and assist participants in articulating insights that are missed by more traditional interview methods. As researchers we hope to add to the legitimacy of widening mental health research to include artistic processes, not only because it humanizes and dignifies women who live with mental illness but also because there is evidence that more meaningful data can be gleaned from arts-based methods, analysis, and representation. The authors recommend that future mental health researchers consider incorporating arts-based research in order to methodologically enhance their work, and including in the research design a peer, that is, an individual with lived experience and expertise in the arts. Arts methods can deepen researcher engagement and assist researchers in the analysis phase, an engagement that is often missing in traditional interview and analysis methods. Only by using methods that allow visceral experience can researchers and community members truly engage, empathize with, and transform the people who are recovering from mental illness. Acknowledgments The authors extend thanks to Trina Oommen, a graduate student in occupational therapy, who assisted in locating and summarizing the relevant research literature, and to Gursharan Virdee, who reviewed an earlier version of the chapter. Thanks are also extended to the many women who participated in this research.

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Using Arts-Based Methods to Create Research Spaces  409 Journal of Psychiatric and Mental Health Nursing, 19(9), 785–91. Medline: 22212193 http://dx.doi.org/10.1111/j.1365-2850.2011.01853.x Collins, P.Y., von Unger, H., & Armbrister, A. (2008, August). Church ladies, good girls, and locas: Stigma and the intersection of gender, ethnicity, mental illness, and sexuality in relation to HIV risk. Social Science & Medicine, 67(3), 389–97. Medline:18423828 http://dx.doi.org/10.1016/j.socscimed.2008.03.013 Crenshaw, K. (1989). Demarginalizing the intersection of race and sex: A Black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics. University of Chicago Legal Forum, 1989, 139–67. Davis, D. (2008). Collage inquiry: Creative and particular applications. LEARNing Landscapes, 2(1), 245–65. Dean, K., Walsh, E., Morgan, C., Demjaha, A., Dazzan, P., Morgan, K., ... Murray, R.M. (2007, April). Aggressive behaviour at first contact with services: Findings from the AESOP First Episode Psychosis Study. Psychological Medicine, 37(4), 547–57. Medline:17018170 http://dx.doi.org/10.1017 /S0033291706008920 Deegan, P. (1987). Recovery, rehabilitation and the conspiracy of hope. Retrieved from https://www.patdeegan.com/sites/default/files/files/conspiracy_of_hope .pdf Deegan, P. (1988). Recovery: The lived experience of rehabilitation. Psychiatric Rehabilitation Journal, 11(4), 11–19. http://dx.doi.org/10.1037/h0099565 Deegan, P. (1996). Recovery as a journey of the heart. Psychiatric Rehabilitation Journal, 19(3), 91–7. http://dx.doi.org/10.1037/h0101301 Dent-Brown, K., & Wang, M. (2006). The mechanism of storymaking: A grounded theory study of the 6-part story method. Arts in Psychotherapy, 33(4), 316–30. http://dx.doi.org/10.1016/j.aip.2006.04.002 Eisner, E.W. (2002). The arts and the creation of mind. New Haven, CT: Yale University Press. Ellsworth, E. (1992). Why doesn’t this feel empowering? Working through the repressive myths of critical pedagogy. In C. Luke & J. Gore (Eds.), Feminisms and critical pedagogy (pp. 90–119). New York: Routledge. Erdner, A., Andersson, L., Magnusson, A., & Lützén, K. (2009, February). Varying views of life among people with long-term mental illness. Journal of Psychiatric and Mental Health Nursing, 16(1), 54–60. Medline:19192086 http:// dx.doi.org/10.1111/j.1365-2850.2008.01329.x Erdner, A., & Magnusson, A. (2011, July). Photography as a method of data collection: Helping people with long-term mental illness to convey their life world. Perspectives in Psychiatric Care, 47(3), 145–50. Medline:21707630 http://dx.doi .org/10.1111/j.1744-6163.2010.00283.x

410  Margolin, Krupa, Kidd, Burnham, Hemingway, Patterson, and Zabkiewicz Fels, L., & Belliveau, G. (2008). Exploring curriculum: Performative inquiry, role drama, and learning. Vancouver: Pacific Educational Press. Fleming, J., Mahoney, J., Carlson, E., & Engebretson, J. (2009, February). An ethnographic approach to interpreting a mental illness photovoice exhibit. Archives of Psychiatric Nursing, 23(1), 16–24. Medline:19216984 http://dx.doi .org/10.1016/j.apnu.2008.02.008 Fraser, K.D., & al Sayah, F. (2011). Arts-based methods in health research: A systematic review of the literature. Arts & Health, 3(2), 110–45. http:// dx.doi.org/10.1080/17533015.2011.561357 Goodman, L.A., Salyers, M.P., Mueser, K.T., Rosenberg, S.D., Swartz, M., Essock, S.M., ..., Swanson, J., & the 5 Site Health and Risk Study Research Committee. (2001, October). Recent victimization in women and men with severe mental illness: Prevalence and correlates. Journal of Traumatic Stress, 14(4), 615–32. Medline:11776413 http://dx.doi.org/10.1023/A:1013026318450 Hulko, W. (2009). The time- and context-contingent nature of intersectionality­ and interlocking oppressions. Affilia: Journal of Women and Social Work, 24(1), 44–55. http://dx.doi.org/10.1177/0886109908326814 Kidd, S.A., Mckenzie, K.J., & Virdee, G. (2014,). Mental health reform at a systems level: Widening the lens on recovery-oriented care. Canadian Journal of Psychiatry, 59(5), 243–9. Medline:25007277 Kidd, S.A., Virdee, G., Quinn, S., , McKenzie, K., Toole, L & Krupa, T. (2014). Racialized women with severe mental illness: An arts-based approach to locating recovery in intersections of power, self-worth, and identity. American Journal of Psychiatric Rehabilitation, 17(1), 20–43. http://dx.doi.org/10.1080 /15487768.2013.873371 Knill, P.J., Levine, E.G., & Levine, S.K. (2005). Principles and practice of expressive arts therapy: Toward a therapeutic aesthetics. Philadelphia: Jessica Kingsley Press. Knowles, J. & Cole, A. (Eds.). (2008). Handbook of the arts in qualitative research: Perspectives, methodologies, examples, and issues. Thousand Oaks, CA: Sage. http://dx.doi.org/10.4135/9781452226545 Køster, A., Lajer, M., Lindhardt, A., & Rosenbaum, B. (2008, December). Gender differences in first episode psychosis. Social Psychiatry and Psychiatric Epidemiology, 43(12), 940–6. Medline:18574541 http://dx.doi.org/10.1007/ s00127-008-0384-3 Leavy, P. (2009a). Social research and the creative arts: An introduction. In P. Leavy (Ed.), Method meets art: Arts-based research practice (pp. 1–25). New York: Guilford Press. Leavy, P. (2009b). The visual arts. In P. Leavy (Ed.), Method meets art: Arts-based research practice (pp. 215–38). New York: Guildford Press.

Using Arts-Based Methods to Create Research Spaces  411 Margolin, I. (2012). Using arts-based research to create research spaces that encourage meaningful dialogue about gender, social inequity, recovery and mental illness. Paper presented at the Critical Inquiries in Mental Health Inequities: Exploring Methodologies for Social Justice Symposium, Centre for the Study of Gender, Social Inequities, and Mental Health, Vancouver, British Columbia. Margolin, I. (2013). Expanding empathy through dance. In B. White & T. Costantino (Eds.), Aesthetics, empathy and education (pp. 83–98). New York: Peter Lang. McNiff, S. (2008). Arts-based research. In J. Knowles & A. Cole (Eds.), Handbook of the arts in qualitative research (pp. 29–40). Thousand Oaks, CA: Sage. Mehrotra, G. (2010). Toward a continuum of intersectionality theorizing for feminist social work scholarship. Affilia: Journal of Women and Social Work, 25(4), 417–30. http://dx.doi.org/10.1177/0886109910384190 Mental Health Commission of Canada. (2012). Changing directions, changing lives: The mental health strategy for Canada. Calgary, AB: Author. Miller, G., & Happell, B. (2006, December). Talking about hope: The use of participant photography. Issues in Mental Health Nursing, 27(10), 1051–65. Medline:17050338 http://dx.doi.org/10.1080/01612840600943697 Miller, W.L., & Crabtree, B.F. (2000). Clinical research. In N.K. Denzin & Y.S. Lincoln (Eds.), Handbook of qualitative research (2nd ed., pp. 607–31). Thousand Oaks, CA: Sage. Morris, M., & Bunjun, B. (2007). Using intersectional feminist frameworks in research. Ottawa: Canadian Research Institute for the Advancement of Women; Retrieved from www.criaw-icref.ca/en/ Morrow, M., & Weisser, J. (2012). Towards a social justice framework of mental health recovery. Studies in Social Justice, 6(1), 27–43. Retrieved from https:// brock.scholarsportal.info/journals/SSJ/article/view/1067 Nordentoft, M., Jeppesen, P., Abel, M., Kassow, P., Petersen, L., Thorup, A., ... Jørgensen, P. (2002, September). OPUS study: Suicidal behaviour, suicidal ideation and hopelessness among patients with first-episode psychosis; Oneyear follow-up of a randomised controlled trial. British Journal of Psychiatry, 181(43), s98–s106. http://dx.doi.org/10.1192/bjp.181.43.s98 Parr, H. (2007). Collaborative film-making as process, method and text in mental health research. Cultural Geographies, 14(1), 114–38. http://dx.doi.org/10.1177 /1474474007072822 Patton, M.Q. (1999, December). Enhancing the quality and credibility of qualitative analysis. Health Services Research, 34(5 Pt 2), 1189–208. Medline:10591279 Romano, D., McCay, E., & Boydell, K. (2012). The use of material objects in understanding the process of recovery from a first episode of schizophrenia. Arts & Health, 4(1), 70–82. http://dx.doi.org/10.1080/17533015.2011.584882

412  Margolin, Krupa, Kidd, Burnham, Hemingway, Patterson, and Zabkiewicz Schön, U.K. (2010, September). Recovery from severe mental illness, a gender perspective. Scandinavian Journal of Caring Sciences, 24(3), 557–64. Medline:20409052 http://dx.doi.org/10.1111/j.1471-6712.2009.00748.x Silver, J., & Reavey, P. (2010, May). “He’s a good-looking chap, ain’t he?”: Narrative and visualisations of self in body dysmorphic disorder. Social Science & Medicine, 70(10), 1641–7. Medline:20202730 http://dx.doi.org /10.1016/j.socscimed.2009.11.042 Thompson, N.C., Hunter, E.E., Murray, L., Ninci, L., Rolfs, E.M., & Pallikkathayil, L. (2008, January). The experience of living with chronic mental illness: A photovoice study. Perspectives in Psychiatric Care, 44(1), 14–24. Medline:18177274 http://dx.doi.org/10.1111/j.1744-6163.2008.00143.x Thorup, A., Petersen, L., Jeppesen, P., Ohlenschlaeger, J., Christensen, T., Krarup, G., ... Nordentoft, M. (2007, May). Gender differences in young adults with first-episode schizophrenia spectrum disorders at baseline in the Danish OPUS study. Journal of Nervous and Mental Disease, 195(5), 396–405. Medline:17502805 Vander Kooij, C. (2009). Recovery themes in songs written by adults living with serious mental illnesses. Canadian Journal of Music Therapy, 15(1), 37–58. Wang, C.C. (2006). Youth participation in photovoice as a strategy for community change. Journal of Community Practice, 14(1–2), 147–61. http://dx.doi.org /10.1300/J125v14n01_09 Wyman-McGinty, W. (2007). Merging and differentiating. In P. Pallaro (Ed.), Authentic movement: Moving the body, moving the self, being moved; A collection of essays (Vol. 2, pp. 154–75). Philadelphia: Jessica Kingsley Publishers.

15 Disrupting Dominant Discourses: Rethinking Services and Systems for Women with Experiences of Abuse l o u i s e g o d a r d a n d v i v i a n e j o s e w s k i ,1 w i t h j i l l c o ry , a l e x x a a b i - j a o u d é , lo r r a i n e h a l i n k a m a l c o e , a n d v i c to r i a s m y e

Women whose lives are shaped by experiences of violence and mental health and/or substance use concerns often engage with multiple systems and agencies in their attempts to access support and safety. These include, but are not limited to, health and mental health services, child welfare services, transition houses, and the legal system. For example, as Morrow, Hankivsky, and Varcoe (2004) explain, when women attempt to leave an abusive partner and re-establish their lives, they are usually dependent on state-funded organizations and social welfare. Further, as has been documented in the literature, women with past or current experiences of abuse tend to experience significantly poorer health and mental health and to use health care services more frequently (Bonomi et al., 2006; Campbell, 2002; Campbell & Lewandowski, 1997; Wuest et al., 2008). At the same time, other studies indicate that while women with experiences of violence may indeed use more health care resources, they also more often experience significant barriers to having their needs adequately met by health and social services and supports (Bates, Hancock, & Peterkin, 2001; Tower, McMurray, Rowe, & Wallis, 2006; Varcoe, 2001; Wuest, Ford-Gilboe, Merritt-Gray, & Berman, 2003). Barriers are particularly prevalent for women whose lives are shaped by the intersecting issues of violence, mental health, substance use, and other social and structural inequities (FordGilboe et al., 2009; Morrow et al., 2004; Varcoe & Irwin, 2004). Therefore, the provision of health and social services and supports that constitute safe, responsive care for women whose lives are shaped by past and/or current experiences of abuse – particularly those living with histories of mental health and substance use issues, and trauma – presents a major concern to those who want to support them, including communitybased leaders in women’s health, health authorities, service providers, and

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community members. In response to these concerns, in 2006 the Woman Abuse Response Program (WARP), operating in British Columbia, Canada, out of B.C. Women’s Hospital and Health Centre (the major affiliation for three authors of this chapter), launched a province-wide consultation initiative entitled “Building Bridges: Linking Woman Abuse, Substance Use and Mental Ill Health.” The goals of the Building Bridges initiative were to (1) increase understanding about the intersections of violence, substance use, and mental ill health that are grounded in women’s voices and lived experiences; (2) encourage and foster cross-sectoral dialogues within and across the areas of mental health, addiction, and anti-violence; and (3) build individual and community capacity to better support women with experiences of violence and mental ill health and/or substance use. The project team collaborated with anti-violence agencies (for example, transition houses, women’s centres, community-based victim services) throughout British Columbia to invite women with past or current experiences of abuse and substance use and/or mental health concerns to participate in locally held focus groups. Self-identified women, nineteen years of age or older, were eligible to take part. The researchers conducted a series of fourteen focus groups across twelve communities in the province, with a total of 102 women. The majority of women identified as White, and a small number identified as First Nations, Inuit, or Métis, or as belonging to an ethnic minority group. There was participant representation from all regions of British Columbia, with 80 per cent of the participants living in urban communities (mid-size or large), and 20 per cent living in rural and remote communities. Following an additional consultation with over 460 service providers (representing eighty-two communities in British Columbia), findings elucidated a range of key barriers and gaps in service provision that women faced when seeking health and social supports. These barriers and gaps included the marginalization of women’s experiences of abuse, the misinterpretation of abuse and its impacts, and fragmented approaches to violence, mental health, and substance use concerns that required women to prioritize one concern or need over another (Cory, Godard, Abi-Jaoudé, & Wallace, 2010; Godard, Cory, & Abi-Jaoudé, 2008). Despite the documented links between experiences of abuse, substance use, and mental health issues, women were often denied access to services because of exclusionary policies in the anti-violence, addictions, and mental health sectors. When women did access services, they often found them to be ineffective and inappropriate in addressing the complexity of their lives, including multiple intersecting social and structural inequities such as stigma, discrimination, racism, colonialism, poverty, and housing insecurity.

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The findings of the original Building Bridges initiative support a growing evidence base that suggests that, despite the expressed intents of the legal, health, and social services systems (including the anti-violence and mental health sectors) to enhance women’s well-being and safety, these services and systems can and do cause harm (Cory et al., 2010; Elliott, Bjelajac, Fallot, Markoff, & Reed, 2005; Humphreys, Regan, River, & Thiara, 2005; Markoff, Reed, Fallot, Elliot, & Bjelajac, 2005). This harm occurs when systems elide the historical and socio-political contexts in which violence against women occurs, when they fail to address or even name the social inequities that exacerbate women’s distress, and when they overlook the capabilities and resourcefulness of women to survive and support themselves and their children productively despite tremendous ongoing adversity. In 2009 the original Building Bridges initiative was extended in order to deepen the data analysis, explore how health services and systems of support interact on the social and structural levels, and understand how these, in turn, shape women’s experiences of vulnerability and oppression. During this next phase a unique partnership and an inter-professional research team was established through a seed grant from the Centre for the Study of Gender, Social Inequities, and Mental Health. The goal of the grant was to support a secondary analysis of the original women’s focus group data in order to explore more closely the structural dimensions of women’s experiences of living with abuse and substance use and/or mental health issues, and women’s ability to negotiate these multiple relations of power. Spanning different disciplines and bridging academia, health, and community-based leadership, this partnership allowed research team members to apply feminist and critical perspectives and expertise in probing for a deeper understanding of the gathered data. In this way, we sought to put the analytic spotlight on the interplay of discourses in practice and their effects on women’s lives, health, and safety. Our team sought to address a number of questions: How do current health and social services and supports fit with women’s understandings and lived experiences of violence and safety? How are myriad social issues, such as poverty and housing insecurity, that are known to curtail the life opportunities of women with past and/or current abuse and mental health and/or substance use concerns being addressed? What structures and processes legitimate, sustain, and reinforce current approaches to policy and practice, and how do they interact? How do these structures and processes shape women’s experiences of services and support in ways that are concordant with wider forms of oppression and domination? Finally, what kind of knowledge is needed to disrupt these interlocking systems of

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structural violence and improve the understanding of, and responses to, violence against women as a social justice and equity issue? In this chapter we share selected findings from the secondary data analysis that highlight the complexity of women’s experiences of violence in relation to the intersecting issues of mental health; substance use; mothering and poverty within the context of the child welfare and legal systems; the health and mental health systems; and the anti-violence sector. We show that opportunities to improve responses to women with experiences of abuse exist through a revaluing of women’s knowledge and by adopting and implementing a violence- and trauma-informed framework at the individual, social, and structural levels of policy, practice, and education. Linking Theoretical Perspectives to Women’s Experiences Our approach to inquiry and research questions has been informed by critical scholarship that has documented the problematic nature of public policy and service delivery. Although commonly viewed as neutral and equally beneficial to all citizens, both policy and delivery are often profoundly exclusionary and embedded in social, ideological, and political forces with particular consequences for marginalized2 and vulnerable groups. Using, for example, Aboriginal women’s experiences of leaving and/or staying­ with an abusive partner as a starting point for understanding what constitutes accessible, safe, and responsive health and social services and sup­ ports, Smye and colleagues (2007–10)3 concluded that women’s experiences­ of leaving and/or staying are organized in large part by institutional policies and practices that are, in turn, informed by intersecting and oppressive ideologies and structures, including patriarchy, biomedicine, and neo­ colonialism. For example, some housing opportunities exclude women who do not have their children with them; and Indigenous women have their children removed far more often than do non-Indigenous women – yet regaining children, for all women, requires safe housing. Similarly, drawing on their long-standing work with girls and women who have experiences of abuse,4 Godard, Cory, and Abi-Jaoudé (2008) found that gender-based violence is routinely framed as an individual problem, which conceals the social and structural nature of violence against women and leads to solutions or interventions aimed at “fixing” the woman rather than challenging the powerful impact of dominant patriarchal ideologies on women. Specifically troubling the attribution of authoritative knowledge, Godard, Cory, and Abi-Jaoudé (2008) concluded that “the best outcomes for women result when women are seen as experts of their own experience and are involved in the development of the supports they receive” (p. 13).

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Thus, in rethinking forms of help for women with experiences of abuse, an analysis of power is essential; power, operating through existing systems, gives authority to some individuals to whom we attribute knowledge, including researchers and social and health care experts, while marginalizing others deemed to lack formal knowledge. Who are deemed knowledge holders and how power functions when knowledge is produced are key questions in feminist scholarship and thought (Ramazanoğlu & Holland, 2002), and these also guided our critique, revealing that those who are marginalized often include the very women who have lived through abuse. Using feminist theory to re-introduce and re-legitimize women’s lived experiences as a valid form of knowledge thus politicizes the social organization of knowledge that underpins current approaches to health and social services and supports. The alternative truths arrived at through this process produce “rupture”’ in the otherwise taken-for-grantedness of “seemingly inclusionary knowledge produced in exclusionary contexts” (Collins, 2009, p. xii). In producing these ruptures, critical feminist inquiries have been instrumental in shedding light on the ways that dominant ideologies (for example, patriarchy, biomedicine, and liberal individualism), in their intersection with a range of gendered medical and socio-political discourses, exert their influence on women’s lives and opportunities. Lavis, Horrocks, Kelly, and Barker (2005), for example, highlight the importance of the ideological role of the medical model of care and its discursive practices, which position women as individually accountable for violence-related symptoms and injuries. In this process of individualizing accountability, power and gender relations tend to remain unexamined, and women’s responses to their experiences of abuse, including depression, anger, and substance use, become misinterpreted by some service providers as “explanations for why she got into the [abusive] relationship or reasons she did not leave the relationship” (Shlonsky, Friend, & Lambert, 2007, p. 348). This has led some scholars to remark with concern on the tendency of the mental health care system to label women who have experienced violence with, for example, borderline personality disorders (Proctor, 2007; Shaw & Proctor, 2005), reaffirming long-standing harmful gendered discourses in the practice of the mental health profession (Burstow, 2003, 2005; Gilfus, 1999; Humphreys & Joseph, 2004; Humphreys & Thiara, 2003; Morrow, 2008). Attention to how these interactive processes of inequity and differentiation across levels of structure, identity, and representation operate is important to developing more responsive and safe health and social services and supports for women with experiences of abuse and mental health and substance use concerns. As supported by the theoretical literature in this

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field, analysis is needed of the various levels at which power operates and subject formation occurs. For example, the dominance of the medical model often results in the labelling of women’s behaviour as problematic (for example, attention seeking, non-compliant), which then shapes the interactions and ultimately the health care that women receive. The judgments and assumptions of health care providers create additional barriers for women in accessing relevant and safe services and supports, and further add to the stigma faced by women with histories of abuse. Method of Inquiry and Data Analysis To examine our research questions, our team applied a feminist critical discourse analysis; that is, we brought together critical discourse analysis and feminist theories with an eye to revealing the discursive social practices that currently sustain and reinforce gendered health and social inequities (Lazar, 2007). In the critical literature a discourse is commonly understood as configurations of ideas that describe the terms of reference in which a social issue or problem is defined, thought of, and discussed (Jørgensen & Phillips, 2002; Phillips & Hardy, 2002). Discourses can thus be said to contain dominant ideologies. These “ideological-discursive formations” often become “naturalized” or taken for granted in social institutions, policies, and practice (Smith, 1987). In this way, discourses (languages and practices) function as important constitutive forces of social identities, social relations, and systems of knowledge and meaning (Jørgensen & Phillips, 2002, p. 67). For example, reflecting on women’s narratives around mothering in the context of abuse, we see women being held as complicit in the abuse perpetrated against them and flagged as mothers at risk, instead of being perceived for their capabilities and for the safety strategies they utilize to protect and care for their children. Yet, although discourses play powerful roles in the construction of truth and reality, a “discourse can never be so completely fixed that it cannot be undermined and changed by the multiplicity of meaning in the field of discursivity” (Jørgensen & Phillips, 2002, p. 28). As in the example above, alternative, conflicting discourses also exist that, when they are actualized, may challenge and transform the prevailing dominant discourses. The aim of critical discourse analysis is therefore to reveal the “dynamics of power, knowledge and ideology that surround discursive processes” (Phillips & Hardy, 2002, p. 20), or, to put it differently, to explore “how some ideas, concepts, and beliefs become dominant or accepted as reality”

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and what the effects of these processes are (Irving & English, 2008, p. 108). As a theory, critical discourse has been criticized for lacking “any guidelines as to which taken-for-granted understandings are most in need of deconstruction and in terms of which political criterion” (Jørgensen & Phillips, 2002, p. 188). To invest critical discourse analysis with a clear political direction, we put forward feminist theorizing as an appropriate and relevant perspective to our research topic. Emphasizing the marginalization of women in the social construction of reality, and the need to make women and their life experiences visible, feminist theorizing directs us to use women’s lived experiences as the starting point for identifying and questioning dominant, naturalized understandings, representations, and practices that ultimately maintain and reproduce gendered inequities (Jørgensen & Phillips, 2002; Lazar, 2007; Smith, 1987). However, while gender as a discourse and a social structure is undoubtedly important for elucidating how the experiences of women and their perceptions of mental health, social services, and systems of support are shaped by and are continuous with wider ideological systems, we need not understand gender as the most important and only axis of oppression. For example, we found that many women’s experiences of oppression could not be divorced from their identity as women living in poverty, from their experiences of homelessness and housing insecurity, or from their immigration status. Rather, as informed by the notion of intersectionality (Collins, 2000; Davis, 2008), we conceive of gender as only one form of oppression that relies for its existence and operation on a multitude of other systems of power, such as capitalism, colonialism, racism, and heterosexism. Our analytical goals were thus to understand and make visible the ways in which gender oppression and inequities are relationally constituted at both the discursive and the structural levels, and how these produce relational differences for women within the context of living with past and/ or current abuse and coexistent mental health and/or substance use concerns. To achieve our goals we applied thematic analytical processes described for qualitatively derived ethnographic data (Braun & Clarke, 2006; Thorne, Kirkham, & O’Flynn-Magee, 2004). First, research team members individually coded focus group transcripts to identify preliminary concepts and illustrative examples that spoke to the factors that shaped women’s interactions with health, legal, and social service systems. Second, the research team collectively analysed these concepts using “comparative re-coding” (Anderson et al., 2003) to identify recurring, converging, and contradictory patterns of interaction, as well as higher-level key concepts and themes within and across interviews. For example, one salient theme

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that emerged throughout women’s narratives was women’s experiences of being disbelieved or seen as un-credible witnesses to their own experiences of abuse. Next, the team’s collective analysis proceeded to explore emerging concepts and themes further from the angles of our theoretical perspectives, analytically linking data and theory. Guided by critical feminist perspectives and an intersectional lens, we paid particular attention to processes of power – that is, how the problem of violence against women was differently constructed in women’s various interactions with health, legal, and social institutions, and how these constructions worked together in shaping women’s experiences of the harms and benefits of services and supports. Our team’s inter-sectoral and interdisciplinary background enabled us to engage in an ongoing reflexive dialogue and deconstruction of the inherent assumptions and taken-for-granted truths that are routinely enacted within our own professional disciplines. This varied background also helped us to recognize the workings of these assumptions in women’s accounts of their encounters with health and social services and supports. Our analysis thus engendered what Anderson (1998) describes as a dialogue between emerging theoretical perspectives and data. Analytically, this required a recursive process of examination, analysis, writing, and reflection, through which, by remaining vigilant and attentive to the issue of voice, we were able to draw distinctions among the researchers’ constructs, the participants’ constructs, the research data, and the researchers’ ideological frames. Exposing Discourses in Action: Insights Gained We focus on three distinct, albeit intersecting, discourses in the discussion of the study’s results: expert discourse, pathologizing discourse, and leaving discourse. While these discourses were central to all focus groups, they also produced relational differences in women’s experiences of vulnerability, depending on their intersection with women’s social positioning and context, such as mental health, substance use, mothering, and poverty. We elucidate how these three discourses exist institutionally and were relevant to the focus group participants in relation to their well-being, safety, and access to mental health and social resources. Rather than feeling supported, women tended to feel discredited, blamed, and silenced through the actions of the medical and social systems that heavily constrained their everyday lives. Caught in the intricate web of these institutions, women’s experiences and responses to violence were increasingly pathologized, diminished, and controlled by systems. These experiences had serious negative consequences for the women’s capacity to re-establish their lives and

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the lives of their children.We offer our detailed analysis of each of the three discourses as follows.

Expert Discourses: Whose Voices Matter? “The judge said, ‘Oh, it’s a soap opera. You’re pretending it’s a movie.’ They just didn’t believe me.”

The experience of being a discredited witness to one’s own abuse ran as a common thread through all focus groups. Women in our study reported a range of interactions with service providers in which their claims of experiencing abuse were met with deep-seated scepticism, disbelief, and doubt. These reports take on greater significance when we consider that the women routinely came into contact with experts, including health and social service providers and government and legal agents, as part of their efforts to leave their relationships and/or move towards safety. Women consistently described how their voices were silenced or marginalized, while the experts’ constructions of the women’s realities and experiences were preferred. As one participant put it, “for myself, when I dealt with health care professionals, especially when I talked about addiction, my words weren’t of value. My voice didn’t mean anything.” Similar experiences were reported by other focus group participants across various service settings, including health care, housing, and anti-violence services, with the women recounting many instances in which they were in effect dissuaded by service providers − and even prohibited − from sharing, as some women noted, their “war stories.” These interactions silenced women and placed the power in the hands of health and social service providers as the only persons equipped to speak with authority. Institutional acts of silencing reveal power differentials between service providers and the women in this study. Service providers are positioned as having full access to expert knowledge. The positioning is differently enacted depending on the distinct and fragmented expert discourses that underpin the dominant policy and practice frameworks of various sectors. In the health care context, for example, health providers, such as physicians, can and do draw on their medical expert status in defending the claim that they are not responsible for dealing with issues of abuse, “which is often seen by health providers as a non-medical or non-health issue” (GarcíaMoreno, 2002, p. 1511). Indeed, several studies show that physicians admit to shying away from asking women about experiences of abuse (D’Avolio et al., 2001; Reid & Glasser, 1997; Sugg & Inui, 1992; Sugg, Thompson,

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Thompson, Maiuro, & Rivara, 1999; Waalen, Goodwin, Spitz, Petersen, & Saltzman, 2000), citing, among other reasons, a lack of “scientifically assessed and effective interventions” and “frustration at the perceived lack of responsiveness of patients to their advice” as barriers to engaging with issues of abuse (García-Moreno, 2002, p. 1510). In other contexts, professionals capitalize on their expert power by claiming to know best what women’s needs are, even when this knowing runs contrary to what women want or believe is best for achieving or maintaining safety (GarcíaMoreno, 2002). As a result, some of the most pressing health concerns of women who have experienced abuse from a partner, including the link between experiences of violence, mental health, and substance use, often remain unacknowledged, unaddressed, and decontextualized (Humphreys et al., 2005). Similarly, interactions with experts often fail to address the multiple intersections that influence women’s lives and life opportunities, such as safe and affordable housing, poverty, lack of social support, stigmatization, and the ongoing, often increasingly intense, frequent abuse after leaving (or the risk of this) (Horrill & Berman, 2004). In our study the valuing of expert knowledge was particularly salient in women’s interactions with courts concerning issues of custody and access, as well as with the child welfare system. In these encounters women’s experiences of abuse were routinely discounted and invalidated. Their suffering was made invisible. One woman narrated her experience after having left her abusive partner: “But where I went was even worse than where I left. And the hardest part for me was they didn’t believe me … the courts didn’t believe me, the judge didn’t believe me. I had to pay for supervised visitations, because family services didn’t believe me. No one believed that what I was telling them, what was going on in my home, was true. So I had to provide the necessary steps to keep my kids safe.” Here the power of the judge to accept the woman’s “truth” rested on his expert status vis-à-vis the woman. The onus was on the victim of abuse to prove to the court the existence of violence towards her and her children. Similarly, several more women with extensive abuse histories said that it was not uncommon for them to be blamed for fabricating stories or distorting facts. This blame supports long-standing gendered representations of women that suggest that women are in some way complicit in their own abuse and/or simply irrational. Our findings thus echo other research that has shown that women are often placed in a double bind – held accountable both for the abuse they experience from their partners and for the safety and protection of their children (Strega et al., 2008; Varcoe & Irwin, 2004). In essence, this bind diminishes and ignores all perpetrator

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and societal accountability, and stigmatizes the women who in this process are often judged as “bad mothers” by child-protection workers for neglecting or failing to protect their children (Johnson & Sullivan, 2008; Kantor & Little, 2003; Mulkeen, 2012). Speaking to an experience shared by several women in our study, one participant discussed the consequences of such social and structural stigmatization as follows: “I had said to [the Ministry] ... ‘Even if you put me on a bus or whatever, I will pay everything back. Just get me and my kids out of here.’ They told me to get a job and do it on my own. ‘If you want out, you do it on your own.’ [By] the end of the relationship the Ministry had removed my children, saying that I neglected to meet their safety requirements, which [I found] was really … ignorant. They made it worse by taking my children, and it was six months that my children were in care before I got them back.” Women’s accounts of the loss of custody, and the persistent fear of having their children removed by child welfare agencies, must be understood in the context of how gendered discourses surrounding mothering become relationally re-enacted within the legal and child welfare systems through constructions of the “expert,” who, as the ultimate authority enabled to speak the truth, holds the power to discredit women as their own witnesses of abuse. Other women in the focus groups spoke of their great efforts to protect their children, even within the context of staying with an abusive partner. However, the woman’s agency tended to be grossly ignored and distorted within the narrow confines of legalistic expert discourses. These distortions exacerbated women’s experiences of social suffering and vulnerability by negating the women as competent mothers and credible witnesses to their experience. In their role as mothers, the women in our study described the institutional regulations of the child welfare and legal systems as blaming and punitive rather than supportive. In several cases a restrictive regime of control and surveillance that authorized experts to determine the capacity of a woman to mother, often without acknowledgment of her practical realities, further constrained her agency. In the accounts of these women, the felt or perceived stigma resulting from institutionalized expert discourses in intersection with other social discourses acted as an important social determinant for women’s mental health and well-being that also operated as a structural constraint on women’s ability to access resources and enact agency. One woman described the way in which her agency with regard to her sick child was constrained by perceived stigma: “My son had a hole in his stomach. When he was born he was 8.6 lbs; when we left the hospital he was 8.3 lbs. And because I had a red flag on my chart … because my girls weren’t with me, and I was overweight … they said, ‘Well, you are

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a poor parent.’ I was timid, I didn’t know what to do … None of the doctors would listen to me about my concerns about my son. He wasn’t gaining any weight. But because I had a red flag, no one believed me. [The health centre] put me in touch with another doctor who listened to what I had to say and did some tests and realized that there was a hole. If they had closed it up months and months earlier, it would have saved him and me from so much pain.” As noted by Kleinman, Das, and Lock (1997), “the trauma, pain and disorders to which atrocity [like the treatment of the woman above] gives rise are health conditions; yet they are also political and cultural matters” (p.  ix). When women are viewed abstractly, as divorced from the social forces and contexts of violence that shape their lives, expert discourses contribute to the depoliticization of violence against women. As a consequence, women’s experiences of abuse and oppression remain too often unacknowledged, their suffering invisible, and their needs unmet (Hamilton, 2010; Humphreys et al., 2005).

Pathologizing Discourse Going to my doctor, I used to break down and cry in his office, and he’d say, “You’re depressed.” “No, I’m just sad. I’m just going through a really sad time.” He said, “There’s a name for that. It’s depression.” Finally he convinced me I should go on an anti-depressant. Like that was going to stop me from being beat up.

Despite the over-representation of women who have suffered violence in the population of mental-health-service users, and their expressed need for mental health support (Bonomi et al., 2006; Golding, 1999; Humphreys & Thiara, 2003; Jones, Hughes, & Unterstaller, 2001), our findings show that the medical model on which psychology and psychiatry base their practices often alienates women. Although the women in our research spoke of severe emotional distress that often fit the pattern of symptoms associated with the diagnostic categories of depression, post-traumatic stress disorder (PTSD), and other psychiatric diagnoses, most of the women were more inclined to use non-psychological and non-medical language to describe their emotional and mental distress. They also more often ascribed the cause of these “symptoms” to abuse. When the women did use medical language, it was most often in reference to the psychiatric diagnoses that they had received as a consequence of seeking professional support in dealing with the constraints of violence on their lives. One participant said, “Myself,

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being abused, I have PTSD. I was actually diagnosed with bipolar. I had no idea.” This comment speaks to the complexity of women’s experiences with mental health diagnoses. While this woman had normalized a diagnosis of PTSD, which she saw as simply what happens to women who experience violence, her response to being diagnosed with bipolar disorder evoked, if not resistance, at least surprise. Regardless of whether or not the diagnosis was a legitimate fit within the confines of psychiatry, this woman’s experience draws attention to the findings of several authors who have noted the problematic tendency of the mental health care system to individualize social and political problems and to pathologize human conditions of social suffering (Josewski, 2012; Morrow, 2008; Morrow, Frischmuth, & Johnson, 2006; Rossiter & Morrow, 2011; Smye, Browne, Varcoe, & Josewski, 2011). In response, Humphreys and Thiara (2003) warn that “the slippage between acknowledging and intervening in the private pain created by violence and then re-constructing this as individual pathology is only a label away” (p. 219). The emerging discourse surrounding PTSD has found strong support among some feminists. For them, PSTD offers an alternative to the traditional victim-blaming stance and hegemonic clinical practices of labelling women’s responses to the traumatic experiences of violence. Unlike these traditional practices, which pathologize and stigmatize women by using labels to mark individualistic psychiatric and personality disorders (for example, borderline personality disorder), the diagnosis of PTSD makes explicit the causal relationship between women’s experiences of abuse and present mental health symptoms (Burstow, 2005; Gilfus, 1999; Humphreys & Joseph, 2004; Morrow, 2008). In this vein, Herman (1997) contends that “knowledge is power. The traumatized person is often relieved simply to learn the true name of her condition. By ascertaining her diagnosis, she begins the process of mastery. No longer imprisoned in the wordlessness of the trauma, she discovers that there is a language for her experience. She discovers that she is not alone; others have suffered in similar ways. She discovers further that she is not crazy; the traumatic syndromes are normal human responses to extreme circumstances. And she discovers, finally, that she is not doomed to suffer this condition indefinitely; she can expect to recover, as others have recovered” (p. 158). Yet, as Humphreys and Joseph (2004) remind us, “the politics of PTSD applied to women’s experiences of violence and sexual assault do not stand outside the development of PTSD as a concept recognized as a diagnostic category within the Diagnostic and Statistical Manual of Mental Disorders (DSM) framework” (p.  560). That is, although PTSD has brought the

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significance of the traumatic nature of women’s experiences of suffering violence into psychotherapeutic discourses, and while it has contributed to the normalization of trauma discourse in relation to violence against women, “the term ‘disorder’ also expresses a notion of pathology, writ large by its inclusion within the DSM framework” (Humphreys & Joseph, 2004, p. 566). For example, reflecting on her experience of being pathologized, the following participant described how the diagnosis of PTSD represented just another label in a long list of psychiatric disorders that she had had attributed to her: “I have been diagnosed with PTSD. I had been diagnosed with OCD … And at one point it was call MPD and now it’s called DID.” To borrow from Gilfus (1999), the price that women have had to pay for the benefits of DSM legitimization of PTSD has been high – some scholars say too high (Burstow, 2003, 2005; Humphreys & Joseph, 2004). Feminist sociologist Dorothy Smith (1990) argues that the institutional practice of psychiatric diagnosing must be understood as part and parcel of a regime of ruling. Within this regime the DSM functions as the key text that mediates the application of diagnoses. From this point of view the medical vocabulary through which individual pain is named, particularly when it involves DSM terminology, is not a neutral tool. Instead, the vocabulary performs an important regulatory function in the social construction and medicalization of women’s experiences and responses to violence by “organiz[ing] what can be said and done” (DeVault & McCoy, 2002, p. 765). According to Conrad (1992), medicalization occurs on the conceptual, interactional, and institutional levels, both within and beyond the medical profession; it is best understood as the process of using a medical model to order and define problems. Consistent with this biomedical ideology, which underpins psychological and psychiatric frameworks for understanding mental health problems, trauma, and substance use (for example, the DSM), the tendency of mental health systems has been to systematically marginalize ideas about social support, as well as the contextualized, culturally inclusive, and strengths-based understandings of violence against women, in favour of dominant biopsychiatric, individualistic treatment models and interventions (Burstow, 2003, 2005; Gilfus, 1999; Humphreys & Joseph, 2004). As a result, Humphreys and Thiara (2003) contend, a woman’s “mental illness” becomes the exclusive focus of treatment with little or no acknowledgment of the abuse context. The effects of this are exemplified by the description of one study participant, who said she felt perpetually inhibited in expressing the truth of her life: “I could never speak completely freely or anywhere freely about the

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relationship. All that was being dealt with was the mental health issue. But the mental health issue had so much to do with the relationship issues.” This participant’s words demonstrate the therapeutic limitations of mental health practices that seek to explain and treat the psychological aftermath of violence as a set of symptoms, which are understood out of context, using the narrow lens of psychopathology. Another participant touched on this point in the following: “But a lot of women are labelling it as depression when they’re actually grieving. And they’re grieving all the losses, they’re grieving not being with a spouse that they expected to retire with, they’re grieving because they’ve lost their children, they’re grieving because of a huge number of things. Yet, grieving after leaving a violent relationship is really not talked about out there.” Here the participant speaks to the subjugation and marginalization of women’s voices when their subjective experiences are reworked to fit a dominant script of the helping professions and systems of support. Our findings indicate that for many women psychiatric diagnoses generally do not capture women’s actual experiences and may add to a sense of vulnerability, by first seizing the women’s power and authority to name and speak about their own experiences, and then ushering them towards treatment choices that they may not want or experience as comfortable. Worse, those treatment options may invalidate women’s experiences by labelling them as individual pathology, even as their pressing needs for safety, shelter, and financial and legal assistance remain unaddressed. In addition, the impact of stigma attached to diagnoses of mental illness may compound the experiences of stigma and discrimination already faced by victims of abuse. Ultimately, being pathologized through diagnosis can re-enact what one participant described as the “abuser’s mantra,” that is, the male claim that the woman’s “craziness” caused the abuse in the first place. In this way, being pathologized can prop up both the historical discourse of mental illness as madness and the discourses of gender that define women as irrational by nature.

Leaving Discourse “They just said, ‘Okay, end the relationship, go your separate ways, and get treatment for your violence.’”

The notion of leaving as the dominant normative ideal underpinning health and social services and supports, designed to help women with experiences of violence, rests on two interrelated key assumptions. First, leaving

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is construed as the most rational choice for a woman experiencing abuse in a relationship (Baker, 1997; Barnett, 2000). Second, it is assumed that the act of leaving an abusive partner will stop the violence (Barnett, 2000; Hamilton, 2010). Although these taken-for-granted assumptions are rarely questioned, our findings show that they can and should be contested. In fact, both assumptions are decontexualized and overly individualistic (Keeling & Van Wormer, 2012; Sandel, 2003). Women in the focus groups expressed significant fear of physical harm and ongoing abuse to themselves and their children by their abusive partner if they left. As the following participant points out, this often makes leaving very difficult or impossible. “I heard people say that you make your own choice; you can do whatever you want. And to an extent I agree, but when you make that choice, you and your children could be killed if you do it, so you choose not to. To an extent that choice is made for you.” Despite the reality of the extreme dangers of leaving, women reported that access to many services and supports, such as shelters and custody rights over children, tend to be offered on the condition that the woman cease all contact with her abusive partner. She must leave and stay out of the abusive relationship. This requirement was experienced as highly problematic. Many women said they were often not in a position to control those decisions: “It’s really difficult, because I remember when I was in an active abusive relationship, it was hard to get out … It was hard to go to a place alone, where he wasn’t constantly following you or having people spy on you. Where you feel safe.” The effects of institutional practices that enforce leaving in exchange for help were often compounded among participants by a stance that constructs leaving as a moral obligation of women with children. This moral discourse trades in stereotypes of the women experiencing abuse as being mentally disordered, and legitimizes formal and informal theorizing that pathologizes women (Lapierre, 2010; Leisenring, 2006). The discourse of leaving thus becomes a common axis on which both expert and pathologizing discourses turn, to devastating effect. One woman summarized it: “Asking for help – as soon as you ask for help – boom! They take your kids.” One key finding of our analysis, then, is that the uncritical enforcement of leaving as the ideal for women in abusive relationships needs to be troubled. This finding is underscored by the intersecting social and structural constraints that women described encountering in everyday life and, in particular, when leaving. Poverty, financial dependency, housing insecurities, and unemployment all acted as significant barriers in women’s

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experiences with respect to leaving. “[Leaving]. That’s a huge thing. When you’re coming out of this ... If there was some way ... Who the hell can afford $900 a month when you are single? If there was some kind of set up [that] when you leave the transition house [you go into] low-income housing, then you can plant your family, afford your rent, get a job, get on your feet. There’s nothing like that.” Simplistic ideas about leaving thus fail to take into account the reality that women’s experiences of abuse often occur within a broader context of disenfranchisement, such as unstable housing, homelessness, and poverty, and are continuous with wider experiences of oppression and domination that are, in turn, linked to the gendered histories of patriarchy, capitalism, colonialism, and racism (Dick & Varcoe, 2004; Morrow et al., 2004; Varcoe, 2002). For many women, the experience of being poor, insecurely housed, and lacking support was decisive in returning to an abusive partner. “I am going back or I am choosing to go back to my husband. The living situation I am in is basically that there is no way I could afford any other place to go other than to live with three or four other women in a house ... But I don’t want to go through it again with a whole lot of new people. It is too emotionally draining. So I am going to try to go back with my husband and see what happens there.” Despite the range of women’s shelters that now exist in Canada, housing options for women leaving abusive relationships remain limited and transitory in nature, with long waiting lists for affordable long-term housing. As a result, several women, including the one above, felt that they were often left with no choice but to return to their abusive partner. This situation had profound consequences for their health and well-being, as another participant made clear: “I can’t even get into them [low-income housing]. I’m on the list now. And then I went back to him, and he beat me up again two weeks ago.” Several women also discussed linkages between the practical realities of leaving and the societal patterns of cultural valuation. In keeping with the findings of Varcoe and Doane (2007), we found that within a culture of victim-blaming, in which blaming is reinforced and maintained by normative claims about good mothering and individual responsibility, both single motherhood and economic dependence can produce new stigmatizing discourses and forms of discrimination. These discourses of discrimination, including the label of “welfare mom,” place mothers who leave their abusive partner in a uniquely precarious situation of vulnerability, stigma, and social exclusion. The following focus group excerpt illustrates the stigma experience of a single mother who was trying unsuccessfully to secure safe market

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housing: “I’ve had so many doors closed in my face because I was a single parent. People would not let me rent a house because I was a single parent. People would not let me rent because I was on welfare and a single parent.” Another participant provided a slightly different insight into another experience of inequity and oppression, based on the co-constitution of gender, class, social positioning, and culture: “When a woman becomes a widow or victim of domestic violence, [she] has to go through separation and divorce. Basically she is expected to become dependent on [her] brother or brother’s wife. Basically you become dependent on your own family. And … it is almost very close to becoming a slave ... Basically as a woman you don’t have the freedom to express your desires and wishes. Like you lose it. Even though you separate and all that, you lose your freedom of making your choices.” In this woman’s experience, leaving an abusive relationship was complicated by her particular socio-political and cultural context. Furthermore, leaving the relationship is not always what women want (Baker, 1997; Magen, 1999). Yet, as the following woman points out, “there’s no support that tries to keep the couple together.” Women discussed the complexity of leaving when the abuser was also the father of their child or children, particularly given the value that both women and legal institutions place on the father-child relationship. For example, one woman described making enormous personal and financial sacrifices to enable her children to stay in touch with their father: “Because the judge didn’t believe me, I had to pay for family services access. They wouldn’t do the provisions for me, so I had to go to work so I could pay for the supervision for my kids so they didn’t get hurt when they were with their dad. Paid supervision. And it was just like one obstacle after another, it didn’t stop, it didn’t stop … and I finally managed to get everything in line. And my kids to this day don’t know that their father abused me; I won’t let them. I don’t feel that it’s beneficial to tell them now; it will just cause them pain because they finally have a relationship with their dad.” Similar to findings by several authors (for example, Keeling & Van Wormer, 2012; Sandel, 2003), in our research we found that when health and social services impose leaving as the singular solution and moral imperative, reaching out for support often poses significant risks of harm. A decontextualized understanding of leaving makes invisible the ways in which the meaning and experiences of leaving intersect with the cultural and economic dimensions of women’s lives to create new forms of violence. Institutional practices, including those of service agencies that ignore the complexity of leaving, subject women to moral judgment and take their

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struggles with leaving as proof of individual failure and incompetence. As a result, depending on their social locations, the women’s experiences, behaviours, and needs are subject to complex institutional reinterpretations that legitimize paternalistic, judgmental, and often coercive treatment that ultimately undermines women’s agency and produces a myriad of negative outcomes for women and their children. Addressing the material barriers to leaving among women who experience partner abuse, such as a lack of safe and affordable housing and inadequate levels of social welfare, is not enough. We must also consider the public stigma directed at single mothers and victims of abuse, and the harms that emanate from the ways in which services and supports are offered. Implications for Policy and Practice Our research elucidates the harms that women with experiences of abuse encounter in their interactions with services – regardless of the intent of service providers and policymakers. A key finding of our research is that gender-based violence is not just an intra- or interpersonal experience; rather, harm has an ongoing presence in women’s lives that extends beyond individual relationships to the disparate power relations within health care and social systems. As our analysis illustrates, dominant discourses fail to construct violence against women in gendered social and structural terms, which results in policies and practices that define violence in individualistic and pathologizing terms and define whether women experiencing abuse are “deserving” of services, public sympathy, support, and safety. Instead of supporting women’s safety and well-being and ensuring opportunities to live violence free, these discourses inform policy and practice and lead to systems that create further harm to women, trap women in abuse, or thrust them into poverty and housing insecurity. In keeping with an understanding of gender-based violence as both a process and a multiply determined, contextually embedded, and relationally mediated outcome, we put forward a violence- and trauma-informed framework that responds better to women’s experiences of abuse and mental health and/or substance use as well as their immediate safety concerns. By adding the notion of violence to the concept of “trauma-informed,” we draw explicit attention to the intersection of women’s experiences of violence and social and structural inequities, including structural violence. Although the emerging notion of trauma-informed supports and services for women with histories of past and/or current abuse (for example, Elliott, Bjelajac, Fallot, Markoff, & Reed, 2005) promises to reshape possibilities

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for girls and women across the continuum of community-based supports and helping professions, attendance to the notion of violence is equally critical for countering the dominant tendency to entrench the focus on the individual, and particularly on her psyche, as both the problem and the solution. Without a broad understanding of violence, its myriad physical, economic, political, and social effects can be overlooked. Adopting a violence- and trauma-informed framework has important implications for policy, education, and practice. At the practice level one way to implement this framework would be to ensure that care and social supports are offered from a stance that frames women’s experiences of abuse (including leaving experiences) in relation to the contextual features of women’s lives, by understanding women’s fears about leaving an abusive partner within the context of gendered poverty, stigma, and discrimination, and by responding with a wide range of services that could be offered, versus viewing and judging those issues from an individualistic perspective. Taking such a structural lens to women’s experiences of staying in or leaving abusive relationships would also make it necessary for providers to act upon what women identify as their most immediate concerns, such as safety; securing safe and affordable housing, income assistance, or employment; and coping with issues related to child welfare, custody, and access (Dell, 2012). This would mean a re-casting of the role of professionals from experts to advocates and change agents who are willing to listen to women’s experiences and engage in collaborative and joint decision-making processes. In this way a violence- and trauma- informed model supports a strength-based approach to care that challenges practitioners to consider how to integrate into their current practice anti-oppression, feminist, and other critical approaches to conceptualizing women’s experiences and responses to violence and trauma, such as substance use and mental distress. For example, if what is valued are the approaches to service delivery that acknowledge the impact of violence (including structural violence) and trauma (meaning historical, intergenerational, emotional, and physical abuses) on women’s mental health and substance use issues, then service delivery would be organized in ways that reflect that understanding; outreach and advocacy would be a priority; and integrated services may be more highly valued (and resourced). By integrated services, we mean services that include interdisciplinary teams that build alliances between different service sectors, such as the legal system and the child welfare system; mental health and addictions; and the wider health and social service sector, including housing, anti-violence, and employment services.

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Providing integrated health and social services to women that align with the espoused values of a violence- and trauma-informed model of care, however, cannot be achieved without educational reforms and professional skills development that teach helping professionals and policymakers the ways in which often well-intended policies, programs, and practice guidelines inadvertently re-harm women, particularly those whose lives are shaped by structural inequities. Considering, for example, the experience of the woman who was told by the judge that her account of abuse was nothing but a “soap opera”; if what is valued is explicit acknowledgment of the social and structural inequities that shape women’s disproportionate experiences of gender-based violence and trauma, the “rightness” of such judicial decision-making and related policy decisions would be ethically unsustainable. Instead, a call for a transformative shift from the current emphasis on management and control to a commitment to create safety and a range of systems of support for women and their families would be warranted. Embracing relational thinking and practice is challenging because it calls for vulnerability. As Smye and colleagues (2010) explain, biomedicine, as the dominant tradition in the helping professions, continues to instil a fear in many service providers that they are vulnerable without professional boundaries and distance from their clients. In addition, many providers feel simply overwhelmed and helpless in the face of women’s experiences of abuse, mental health, and substance use. To overcome this fear, training must start from a deep understanding of women’s experiences of abuse in order to engender empathy and compassion rather than judgment and harm. Next, it would require practitioners to engage in a relational understanding of their own social positioning in intersection with social and structural systems of oppression. At an organizational level, change processes can be time consuming and difficult and may benefit from the development of a violence- and traumainformed tool-kit. Such a tool-kit would help organizations to develop, implement, and evaluate organizational change strategies for incorporating violence- and trauma-informed principles into the organization’s policies, procedures, and interactions with women and their families. Although any such tool-kit needs to be adjusted to the particularities of organizational contexts and needs, a violence- and trauma-informed tool-kit could serve as a useful road map for identifying the iterative phases and different axes of organizational transformation. For example, drawing on the work of Tina Lopes and Barb Thomas (2006) and others, organizational change requires working with members at all levels of the organization,

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including front-line staff, managers, administrators, directors, and unions. This process, broadly speaking, can be divided into three overlapping phases: (1) In keeping with a violence- and trauma-informed lens, the aim of the first phase would be to generate dialogue within the organization and provide training where needed in order to gain a better understanding of violence and trauma in women’s lives, their impact on women’s life opportunities and well-being, and the multiple ways in which women resist and cope; (2) in the second phase the focus could then shift towards promoting an organizational understanding of how dominant discourses operate in and through organizational structures and processes, and of the impact that this has on women’s experiences of care and well-being; and (3) the insights gained from such organizational self-assessment are critical for the third phase of organizational change, which is characterized by the development and implementation of specific strategies and responses that are aligned with violence- and trauma-informed principles. Overall, organizational change requires ongoing commitment to a process, which includes ongoing reflexivity, dialogue, and evaluation. To guide and facilitate this process, a violence- and trauma- informed tool-kit should offer a variety of substantive case studies that include narratives and stories told by women themselves, to link theory, practice, and lived experience. In addition it should include self-assessment tools, and critical dialogue questions to help participants clarify underlying assumptions and values. Organizations do not need to reinvent the wheel; through applied case examples of social justice work, tool-kits can offer organizations concrete examples of how to integrate violence- and trauma-informed principles into policy and practice. Although a number of trauma-informed tool-kits have been developed (see, for example, Guarino, Soares, Konnath, Clervil, & Bassuk, 2009; Institute for Health and Recovery, 2012; Jean Tweed Centre, 2013), the authors are not aware of the existence of a violence- and trauma-informed tool-kit. As we have argued, a narrow focus on trauma omits women’s experiences of systemic oppression and structural violence and thus is not enough to truly promote health and safety for women who live with histories of abuse, and may in fact risk re-traumatizing women and compounding existing harms. At a structural level a violence- and trauma-informed framework highlights the need to shift the public and institutional gaze beyond a narrow focus on the psychological effects of current and/or past experiences of abuse to a relational understanding of women’s health and support needs. With an emphasis on structural rather than atomized, private explanations

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and solutions for gender-based violence, a violence- and trauma-informed framework situates women’s experiences of violence within multiple oppressions, and highlights perpetrator and systemic social accountability for addressing violence against women as a human rights and social justice concern. In the pursuit of social justice and equity, merely recognizing that structural inequities exacerbate women’s experiences of violence and limit their opportunities to achieve safety and well-being is not enough. Ensuring that women, including those who remain in an abusive relationship, have access to a broad spectrum of supports – such as educational and employment opportunities, peer support and women’s support groups, outreach, advocacy, and ongoing material support (for example, food, transportation, childcare) – is essential to truly help, rather than harm, women and assist them in re-establishing their lives. As we have outlined, the process of leaving an abusive relationship is complex and in many cases is not a viable option, owing to increased risks, economic inequities, and housing insecurity. Access to adequate social assistance rates and safe, stable, affordable housing cannot be over-emphasized and is fundamental to women achieving safety and well-being for themselves and their children. Countering and, ultimately, shifting firmly entrenched social and political discourses within social systems may seem an ambitious task; yet by listening to the women’s voices in this study, we should realize that the solutions for enacting socially just, violence- and trauma-informed policies and practices are within reach but require our sustained collective will, effort, and advocacy.

NOTES 1 Godard and Josewski are co-first authors; they contributed equally to the chapter. 2 Our use of the term marginalization, or marginalized, refers both to the conditions and processes by which particular populations are affected by structural inequities and structural violence resulting in a disproportionate burden of ill health and social suffering, and to peoples’ agency, resistance, and resilience in the face of these challenges. 3 This work refers to a research project entitled “Aboriginal Women’s Experiences of Leaving and/or Staying with an Abusive Partner.” The project was funded by the Canadian Institutes of Health Research (2007–10). Smye served as the principal investigator, and Josewski as the research manager. Co-principal

436  Godard and Josewski, with Cory, Abi-Jaoudé, Malcoe, and Smye investigators included Annette Browne, Madeleine Dion Stout, and Colleen Varcoe. Co-investigators included Marilyn Ford Gilboe, Lorraine Davies, and Nadine Caplette. 4 See, for example, J. Cory, L. Godard, A. Abi-Jaoudé, and J. Wallace, “Building Bridges: Linking Woman Abuse, Substance Use, and Mental Ill Health,” for their introduction to the concept of violence- and trauma-informed policy practice; and L. Godard, J. Cory, A. Abi-Jaoudé, K. McAndless-Davis, and N. Armstrong, “Making Connections: Supporting Women with Experiences of Violence, Substance Use, and/or Mental Health Concerns,” as a practice example of a violence- and trauma-informed approach. REFERENCES Anderson, J.M. (1998, March). Speaking of illness: Issues of first-generation Canadian women; Implications for patient education and counseling. Patient Education and Counseling, 33(3), 197–207. Medline:9731157 http://dx.doi.org /10.1016/S0738-3991(98)00019-6 Anderson, J., Perry, J., Blue, C., Browne, A., Henderson, A., Khan, K.B., ... Smye, V. (2003, July–September). “Re-writing” cultural safety within the postcolonial and postnational feminist project: Toward new epistemologies of healing. Advances in Nursing Science, 26(3), 196–214. Medline:12945655 http://dx.doi.org/10.1097/00012272-200307000-00005 Baker, P.L. (1997). And I went back: Battered women’s negotiation of choice. Journal of Contemporary Ethnography, 26(1), 55–74. http://dx.doi.org/10.1177 /089124197026001003 Barnett, O.W. (2000). Why battered women do not leave: Part 1, External inhibiting factors within society. Trauma, Violence & Abuse, 1(4), 343–72. http:// dx.doi.org/10.1177/1524838000001004003 Bates, L., Hancock, L., & Peterkin, D. (2001). “A little encouragement”: Health services and domestic violence. International Journal of Health Care Quality Assurance Incorporating Leadership in Health Services, 14(2), 49–56. Medline:11436751 http://dx.doi.org/10.1108/09526860110386474 Bonomi, A.E., Thompson, R.S., Anderson, M., Reid, R.J., Carrell, D., Dimer, J.A., & Rivara, F.P. (2006, June). Intimate partner violence and women’s physical, mental, and social functioning. American Journal of Preventive Medicine, 30(6), 458–66. Medline:16704938 http://dx.doi.org/10.1016/j.amepre.2006 .01.015 Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Quali­ tative Research in Psychology, 3(2), 77–101. http://dx.doi.org/10.1191 /1478088706qp063oa

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438  Godard and Josewski, with Cory, Abi-Jaoudé, Malcoe, and Smye Elliott, D.E., Bjelajac, P., Fallot, R.D., Markoff, L.S., & Reed, B.G. (2005). Trauma-informed or trauma-denied: Principles and implementation of traumainformed services for women. Journal of Community Psychology, 33(4), 461–77. http://dx.doi.org/10.1002/jcop.20063 Ford-Gilboe, M., Wuest, J., Varcoe, C., Davies, L., Merritt-Gray, M., Campbell, J., & Wilk, P. (2009, March). Modelling the effects of intimate partner violence and access to resources on women’s health in the early years after leaving an abusive partner. Social Science & Medicine (1982), 68(6), 1021–9. Medline:19188012 http://dx.doi.org/10.1016/j.socscimed.2009.01.003 García-Moreno, C. (2002, 27 April). Dilemmas and opportunities for an appropriate health-service response to violence against women. Lancet, 359(9316), 1509–14. Medline:11988263 http://dx.doi.org/10.1016/S0140-6736(02)08417-9 Gilfus, M.E. (1999). The price of the ticket: A survivor-centered appraisal of trauma. Violence against Women, 5(11), 1238–57. http://dx.doi.org/10.1177 /1077801299005011002 Godard, L., Cory, J., & Abi-Jaoudé, A. (2008). Building bridges: Linking woman abuse, substance use and mental ill health; Summary Report. Retrieved from http://www.bcwomens.ca/Services/HealthServices/WomanAbuseResponse /Building+Bridges.htm Golding, J.M. (1999). Intimate partner violence as a risk factor for mental disorders: A meta-analysis. Journal of Family Violence, 14(2), 99–132. http://dx.doi .org/10.1023/A:1022079418229 Guarino, K., Soares, P., Konnath, K., Clervil, R., & Bassuk, E. (2009). Traumainformed organizational toolkit. Rockville, MD: Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, and the Daniels Fund, the National Child Traumatic Stress Network, and the W.K. Kellogg Foundation. Retrieved from http://www.nada.org.au/media/14607 /tictoolkitforhomelessservicesusa.pdf Hamilton, M. (2010). Judicial discourses on women’s agency in violent relationships: Cases from California. Women’s Studies International Forum, 33(6), 570–8. http://dx.doi.org/10.1016/j.wsif.2010.09.007 Herman, J. (1997). Trauma and recovery: The aftermath of violence – from domestic abuse to political terror. New York: Basic Books. Horrill, K., & Berman, H. (2004). Getting out and staying out: Issues surrounding a woman’s ability to remain out of an abusive relationship. Centre for Research on Violence against Women and Children, University of Western Ontario. Retrieved from http://www.learningtoendabuse.ca/sites/default/files /Final-GettingOutandStayingOutIssuesSurroundingaWomansAbilitytoRemain OutofanAbusiveRelati_000.pdf

Disrupting Dominant Discourses  439 Humphreys, C., & Joseph, S. (2004). Domestic violence and the politics of trauma. Women’s Studies International Forum, 27(5-6), 559–70. http://dx.doi .org/10.1016/j.wsif.2004.09.010 Humphreys, C., Regan, L., River, D., & Thiara, R.K. (2005). Domestic violence and substance use: Tackling complexity. British Journal of Social Work, 35(8), 1303–20. http://dx.doi.org/10.1093/bjsw/bch212 Humphreys, C., & Thiara, R. (2003). Mental health and domestic violence: “I call it symptoms of abuse.” British Journal of Social Work, 33(2), 209–26. http:// dx.doi.org/10.1093/bjsw/33.2.209 Institute for Health and Recovery. (2012). Developing trauma-informed organizations: A toolkit (2nd. ed.). Retrieved from http://healthrecovery.org/images /products/30_inside.pdf Irving, C.J., & English, L.M. (2008). Partnering for research: A critical discourse analysis. Studies in Continuing Education, 30(2), 107–18. http://dx.doi.org /10.1080/01580370802097702 The Jean Tweed Centre. (2013). Trauma matters. Retrieved from http://jeantweed .com/wp-content/themes/JTC/pdfs/One%20pager%20Systems%20Level.pdf Johnson, S.P., & Sullivan, C.M. (2008). How child protection workers support or further victimize battered mothers. Affilia: Journal of Women and Social Work, 23(3), 242–58. http://dx.doi.org/10.1177/0886109908319113 Jones, L., Hughes, M., & Unterstaller, U. (2001). Post-traumatic stress disorder (PTSD) in victims of domestic violence: A review of the research. Trauma, Violence & Abuse, 2(2), 99–119. http://dx.doi.org/10.1177/1524838001 002002001 Jørgensen, M., & Phillips, L. (2002). Discourse analysis as theory and method. Thousand Oaks, CA: Sage. http://dx.doi.org/10.4135/9781849208871 Josewski, V. (2012). Analysing “cultural safety” in mental health policy reform: Lessons from British Columbia, Canada. Critical Public Health, 22(2), 223–34. http://dx.doi.org/10.1080/09581596.2011.616878 Kantor, G.K., & Little, L. (2003). Defining the boundaries of child neglect: When does domestic violence equate with parental failure to protect? Journal of Interpersonal Violence, 18(4), 338–55. http://dx.doi.org/10.1177 /0886260502250834 Keeling, J., & van Wormer, K. (2012). Social worker interventions in situations of domestic violence: What we can learn from survivors’ personal narratives. British Journal of Social Work, 42(7), 1354–70. http://dx.doi.org/10.1093/bjsw /bcr137 Kleinman, A., Das, V., & Lock, M. (1997). Social suffering. Berkeley: University of California Press.

440  Godard and Josewski, with Cory, Abi-Jaoudé, Malcoe, and Smye Lapierre, S. (2010). More responsibilities, less control: Understanding the challenges and difficulties involved in mothering in the context of domestic violence. British Journal of Social Work, 40(5), 1434–51. http://dx.doi.org /10.1093/bjsw/bcp080 Lavis, V., Horrocks, C., Kelly, N., & Barker, V. (2005). Domestic violence and health care: Opening Pandora’s box; Challenges and dilemmas. Feminism & Psychology, 15(4), 441–60. http://dx.doi.org/10.1177/0959-353505057618 Lazar, M.M. (2007). Feminist critical discourse analysis: Articulating a feminist discourse praxis. Critical Discourse Studies, 4(2), 141–64. http://dx.doi.org/10 .1080/17405900701464816 Leisenring, A. (2006). Confronting “victim” discourses: The identity work of battered women. Symbolic Interaction, 29(3), 307–30. http://dx.doi.org/10.1525 /si.2006.29.3.307 Lopes, T., & Thomas, B. (2006). Dancing on live embers. Toronto: Between the Lines. Magen, R.H. (1999). In the best interests of battered women: Reconceptualizing allegations of failure to protect. Child Maltreatment, 4(2), 127–35. http:// dx.doi.org/10.1177/1077559599004002005 Markoff, L.S., Reed, B.G., Fallot, R.D., Elliot, D.E., & Bjelajac, P. (2005). Implementing trauma-informed alcohol and other drug and mental health services for women: Lessons learned in a multisite demonstration project. American Journal of Orthopsychiatry, 75(4), 525–39. Medline:16262512 http:// dx.doi.org/10.1037/0002-9432.75.4.525 Morrow, M. (2008). Women, violence and mental Illness: An evolving feminist critique. In C. Patton & H. Loshny (Eds.), Global science / women’s health (pp. 147–74). New York: Cambria Press. Morrow, M., Frischmuth, S., & Johnson, A. (2006). Community-based mental health services in BC. Vancouver: Canadian Centre for Policy Alternatives. Morrow, M., Hankivsky, O., & Varcoe, C. (2004). Women and violence: The effects of dismantling the welfare state. Critical Social Policy, 24(3), 358–84. http://dx.doi.org/10.1177/0261018304044364 Mulkeen, M. (2012). Gendered processes in child protection: “Mother-blaming” and the erosion of men’s accountability. Irish Journal of Applied Social Studies, 12(1), 74–88. Phillips, N., & Hardy, C. (2002). Discourse analysis: Investigating processes of social construction. Thousand Oaks, CA: Sage. http://dx.doi.org/10.4135 /9781412983921 Proctor, G. (2007). Disordered boundaries? A critique of “borderline personality disorder.” In H. Spandler & S. Warner (Eds.), Beyond fear and control: Working with young people who self-harm (pp. 105–20). Ross-on-Wye, UK: PCCS Books.

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16 An Intersectionality Approach to Resilience Research: Centring Structural Analysis, Resistance, and Social Justice sarah chown and lorraine halink a malcoe

Introduction Throughout human history, same-sex desire and relationships have existed in many forms across multiple cultural contexts. However, the birth of the term homosexual – and particularly its relationship to medicine and “the clinic” – has been the subject of ongoing scholarly debate (Wahlert, 2012). It seems clear that the term was first used in print in the late-­nineteenth century in both legal and medical texts of Austro-German, Austro-Hungarian, and Italian origin (Wahlert, 2012). Also clear is that the medical use of “homosexual” as a pathological category, including as a defined mental disorder in the Diagnostic and Statistical Manual (DSM), has caused great harm to gay men1 for more than a century (Dowsett, 2007; Wahlert, 2012). Yet, gay men and diverse communities of queer2 people have resisted the characterization of their sexual desires and personhood as sick or abnormal, advocating for de-medicalization and for equality, dignity, and justice in law, health, and social settings (Kinsman, 2001; Minton, 1997; Wahlert, 2012). Gay men’s activism beginning in the 1960s led to the removal of homosexuality as a designated mental illness from the DSM-2 in 1973 (Wahlert, 2012). However, the perception among many psychiatrists and clinicians that homosexuals are diseased individuals did not end in 1973. Indeed, pathologization of gay men surged with the emergence of HIV/AIDS in the early 1980s (Wahlert, 2012), and it persists – albeit with more coded language – into the present. Contemporary pathologization is evident in ongoing debates over psychiatric diagnoses of “gender dysphoria,” “dishomophilia,” “egodystonic homosexuality,” and “sexual conflict disorder” (Wahlert, 2012,

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p. 270) and in depictions within the public health and mental health literature of “damaged psychologies” resulting from “internalized homophobia” among gay men (Aguinaldo, 2008, p. 90). Many scholars have critiqued these conceptualizations of internalized homophobia, which individualize the societal phenomena of heterosexism. Building on these critiques, Aguinaldo (2008) argues that the extant framing of internalized homophobia “encourages health care professions to help gay men better adapt to an oppressive society and to accommodate oppression and its effects” (p. 92). Mental health research on internalized homophobia reinforces heteronormative assumptions of gay men’s deficits. Studies point to internalized homophobia as a cause of “self-compromising behaviours,” such as depression, suicidality, substance use, “sexual risk taking,” and homelessness (Aguinaldo, 2008, p. 91). This research discredits men’s agency – including the possibility that some of these actions represent political acts of resistance – and diverts attention from the social change needed to prevent all forms of homophobia. For decades, gay men and gay rights activists have opposed these and other deficit-based approaches to understanding their health because they reinforce societal beliefs that gay lives are pathological and thus an “insufficient form of personhood” (Wahlert, 2012, p. 271). More recently, gay men have proposed resilience-based approaches as an alternative. For example, Eric Rofes (2005), a leader in gay men’s health and HIV activism in the United States, has argued for resilience paradigms that “take as [their] starting point that most gay men are already happy, healthy, and successful” (p. 1). Gay men’s activism has been a key factor precipitating a marked increase in the use of the term resilience in gay men’s health literature over the past decade. Rofes sounded a call in 1999 to “transform the ways in which we think about and evaluate gay men … into a model which recognizes the tenacity, survival-skills, and overall resilience of our cultures and communities” (p. 11). However, before Rofes, in the 1980s, gay men were writing about what is understood today as resilience in their communities. Black gay men’s literature features many examples, such as these words by activist and author Joseph Beam, writing in 1984: “I dare myself to dream of us moving from survival to potential, from merely getting by to a positive getting over” (as cited in Harris, 2005, p. 30). Despite increased attention to the concept of resilience in gay men’s health (Savin-Williams, 2005, p. 50), there is no consensus definition, operationalization, or framework that informs gay men’s health resilience research. Much of the recent gay men’s health research that uses resilience approaches is based on the psychological construct of resilience (Chown

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& Malcoe, 2012) that has been commonly used within academic research since the 1980s (Ungar, 2012), rather than on emic notions proposed from within communities of gay men. Our systematic assessment of the definitions of resilience that were used in English-language (mostly U.S.-based) gay men’s health research for the twenty-five-year period from 1987 to 2012 found that the definitions closely mirrored those used in psychology and shared two characteristics: (1) resilience emerged in the context of current or former exposure to adversity; and (2) resilience required researcher-determined notions of “successful” negotiation of acute or chronic adverse circumstances (Chown & Malcoe, 2012). Recent scholarship has delineated concerns about these narrow psychology-based concepts of resilience and the resulting knowledge produced by academic-based resilience research, which have not only implications but also real life consequences for individuals and communities who experience and resist high levels of marginalization (for example, Wexler, DiFluvio, & Burke, 2009). There have been critiques of the prevailing hegemonic cultural norms that undergird current understandings and measures of resilience; of the absence of a structural analysis of factors that shape both the adversity experienced by gay men and their opportunities to achieve resilience; and of the discourse that expects resilience from gay men (for example, participant in Tooley, 2010). Our conceptual framework attempts to rectify these criticisms.

Objectives We propose a conceptual framework for resilience research that replaces dominant psychology-based approaches with a focus on structural analysis, resistance, and social justice. Our framework is informed by gay men’s ongoing health activism, as well as intersectionality and queer theory. We put forward five principles to guide resilience-based research, arguing that producers and consumers of this work should (1) incorporate historical and structural analysis, (2) foreground interlocking systems of domination, (3) affirm resistance, (4) centre in the margins, and (5) engage in self-­ reflexive praxis. We next apply these principles to an analysis of three recent research articles that explore resilience among gay men and other men who have sex with men. Through these three examples we demonstrate ways in which the five principles can inform knowledge production with an explicit social justice aim of advancing social and health equity. We hope that this framework will support the health and well-being of diverse gay men and their communities.

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Gay Men’s Health Activism For nearly a century gay and lesbian people have advocated for, and participated in, improving knowledge production about their lives as an activist strategy (Minton, 1997). As described above, during the 1990s activist academics and gay men’s health leaders in the United States (Rofes, 1999) and Canada (Ryan & Chervin, 2001) called for research to move away from pathologizing approaches to gay men’s health towards an emphasis on gay men’s strengths and successes. These initial calls for resilience research challenged heteronormative beliefs that were shaping the approach to research about gay men. Subsequently the concept of resilience has been used in Canadian gay men’s health policy documents to affirm current and past strengths of gay men’s communities (for example, Ryan & Chervin, 2001). Resilience has also been a focus of recent Canadian gay men’s health summits for practitioners, advocates, and policymakers (for example, Community-Based Research Centre, 2010). Gay men have a history of advocacy directed towards research and policy issues that affect their lives, particularly in response to HIV. Formal gay organizing in Canada emerged in the 1960s, focusing on an agenda that sought access to institutions (for example, military service) and equality under the law (for example, human rights protections, and removing homosexuality as an aggravating factor in the severity of criminal acts) (M. Smith, 2007). This initial activism leveraged the skills and experience that had been developed by the earlier women’s and youth movements (Roy, 1995; M. Smith, 2007). However, the emergence of the HIV epidemic in the United States and Canada in the early 1980s – first concentrated among gay men – shifted the focus of many gay activists (M. Smith, 2007). From the outset of the epidemic, people living with the virus or the syndrome it causes, AIDS, articulated the need for their experiences and knowledge to inform institutional responses to people living with, and at risk of, HIV. In Canada and elsewhere, governments were pushed to respond to HIV because of the advocacy efforts of people living with HIV/AIDS (PHAs)3 and the organizations they formed, such as the AIDS Coalition to Unleash Power (ACT UP) in the United States, and AIDS Action Now! (AAN!) in Canada (Roy, 1995). With PHAs in leadership positions, the activist response to HIV was framed “through a personal awareness and understanding of their experience” (Brown et al., 2004, p. 53). In the Canadian context, AAN! succeeded in securing access to HIV medications, funding for local supports and research, and a national AIDS strategy (AAN!, n.d.).

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Community responses to HIV/AIDS have expanded to include continued activism, AIDS service organizations, and an HIV research sector. All of these responses espouse – to varying degrees – the principle of greater and meaningful involvement of people with HIV/AIDS (GIPA/MIPA), which affirms the centrality of the experiences and knowledge of PHAs (Travers et al., 2008; UNAIDS, 2007). This approach prioritizes the meaningful involvement of PHAs in generating, developing, implementing, and evaluating research, policy, and programs across the domains of prevention, treatment, care, and support (OAN, 2011). In Canadian practice, GIPA/ MIPA has resulted in PHA engagement in institutions and organizations that provide funding, offer services, affect policy, and conduct research through both formal (for example, advisory committees, paid staff, peer research associates) and informal (for example, conversations, casual volunteers) channels. GIPA/MIPA is consistent with the idea of “centring in the margins,” a key tenet of intersectionality discussed in detail below.

Intersectionality The term intersectionality was first introduced to the academic literature by Crenshaw (1989), who argued that “the multidimensionality of Black women’s experience” (p. 139) in the United States required analysis of Black women’s simultaneous and intersecting experiences of racism and sexism. Crenshaw argued that these experiences were distorted and “theoretically erased” by single-axis sex or race frameworks prevalent in much of prominent feminist and anti-racist theory and activism of the day. Among its many contributions, intersectionality has disrupted the notion of homogenous group identities, such as “women” and “people of colour,” and has created new possibilities for collective social action. Intersectionality not only explains but also seeks to resist and dismantle intersecting systems of power that (re)produce unjust social relations (Dhamoon, 2011). Although intersectionality is a relatively new concept in public health and policy scholarship (Hankivsky, 2011; Schulz & Mullings, 2005), many communities have used the language and analysis of intersectionality for some time. For example, writings by men who identify as Black and as gay have considered the impacts of oppressive systems and embodied markers of exclusion/inclusion on their lives (Bowleg, 2013). In one 1986 essay, On Not Being White, U.S. poet Reginald Shepherd (2005) described the challenges of integrating multiple social identities: “I have spent years proudly and often militantly defining myself as a gay man; I am still tentatively

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moving toward equally proudly defining myself as a black man. The process of reconciling myself to each of my social identities has had much to do with how and to what extent those around me bring the two together and keep them separate … I was black before I was consciously sexual, but I was sexual long before I had the words for sex or race; and when did I become ‘I’?” (as cited in Harris, 2005, p. 56). To put this nuanced articulation into Dhamoon’s (2011) analytic rubric for intersectional research, Shepherd’s reflections illustrate the complex and shifting nature of identities marked as different (for example, gay man, Black man) as well as “categories of difference” (for example, gender, sexual orientation, race). Dhamoon uses two additional terms to capture the interrelated aspects of an intersectional analysis: “processes of differentiation” (for example, sexualization, gendering, racialization) and “systems of domination” (for example, heterosexism, patriarchy, racism). By analysing these interactive processes and systems, Dhamoon argues that we can illuminate the “doing and making of difference” (p. 235) and the dynamic workings of power. For example, quantitative health researchers typically examine outcomes associated with being a member of groups marked as different (for example, gay or Black) by using dominant group identities (for example, heterosexual, White) as the standards for comparison. This common research practice leaves the health statuses of dominant identities unmarked and unexamined (Dean, 2010) and perpetuates “the myth that identities naturally preexist and the fallacy that subjects have identities” (Dhamoon, 2011, p. 235, italics in original). This practice is thus part and parcel of societal processes of differentiation that normalize unequal power relations between groups. As Dean (2010) argues, by instead shifting the analysis to the unmarked, we can “focus our attention on how white supremacy, male domination and heteronormativity operate through their absence, omission, and unnamed status, as well as through repressive power relations” (p. 127). Dhamoon (2011) explains that drawing attention to interpersonal and institutional processes of differentiation, for example via discourses and everyday practices of gendering and sexualization, shifts the analysis away from binary notions of difference – and of oppression versus privilege – towards a structural analysis of “differing degrees and forms of penalty and privilege” (p.  234, italics in original). From this perspective, all of us, as actors in ongoing systems of domination, participate in the doing and undoing of everyday processes of inclusion and exclusion that differentially affect individuals’ rights to citizenship, material conditions of living, and participation in daily life.

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According to Dhamoon (2011), systems of domination include social and institutional processes and arrangements that distribute power to shape the lives of individuals and communities. These systems operate in mutually constituting ways at multiple levels. Kanani (2011) delineates how, at the societal level, settler colonialism and racism have been integral to oppressive practices and policies of psychiatric institutions in Canada and the United States, resulting in high levels of “surveillance and control of Indigenous people’s reproduction” through state-sanctioned, forced sterilizations of “mentally defective” First Nations women (per, for example, Alberta’s Sexual Sterilization Act), and in disproportionately high rates of psychiatric institutionalization of “violent” African Americans in the late 1880s and early 1900s by “intimidating, punishing, and controlling African Americans who did not remain docile,” in order to maintain a racist social order (pp.  8–9). At the interpersonal level, individuals and groups enact power that (re)creates, (re)produces, and/or resists these systems of domination (Cohen, 2004; Collins, 2000). This complex understanding of power affords opportunities for individuals and groups to enact resistance and agency; thus, the analysis by intersectionality scholars of mutually constituting systems of domination is integral to social justice strategies that seek to disrupt these systems (Spade, 2013). Intersectionality also emphasizes the “situatedness” of all knowledge (Collins, 2000), thereby asserting the value of multiple forms of knowledge and especially knowledge garnered from lived experience because it is so often discounted by academic research. In both types of knowledge generation, individuals’ social locations and first-hand experiences of systems of domination affect their observations of the world, and thus the understandings produced. Intersectionality encourages its practitioners to consider these limitations of knowledge production and to make them visible in their work (Dhamoon, 2011, p. 240).

Locating Ourselves in This Work In the spirit of the self-reflexive praxis we advocate for here, we offer a brief discussion of our involvement in this work. We hope that our approach to resilience research disrupts and challenges what we see as the harms caused by too much current academic work in the area of gay men’s health, especially the harms of perpetuating notions of health and wellness based on White, heterosexual, middle-/upper-class, and professional norms. Our reflections are an attempt to offer the reader some transparency about our experiences, commitments, and beliefs that affect and limit the knowledge

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we produce. As people who are not gay men, we do not purport to speak for this heterogeneous group. Sarah My approach to gay men’s health is largely informed by my experiences of working alongside gay men in Vancouver, the unceded Coast Salish Territories, and Ontario, Canada, since 2010. Through my training and professional and volunteer experiences in academic and community-based settings, I have seen gay men’s efforts to support each other and strengthen their communities, and I have sought to integrate the theoretical frameworks, such as intersectionality, that I encountered in my public health graduate studies. My ongoing experience working alongside diverse groups of gay men grounds my understanding of intersectionality and queer theory and also informs my learning about programming and research within the fields of HIV and gay men’s health. These paradigms provide a framework that helps me critique my own work; centre the voices and experiences of diverse queer men; continue to learn; and challenge, through my research and practice, the reproduction of oppression. Lorraine I have limited experience in the field of gay men’s health and in working with communities of gay men. My interests in this work stem from my struggles within and against the academic industrial complex during the past twenty-five years, particularly in the fields of public health and mental health in Canada and the United States. I have contributed to and become increasingly dismayed with the limited theoretical, epistemological, and ethical foundations of mainstream knowledge production and education in these fields. From intersecting positions of privilege and penalty, I have sought out new social justice–centred approaches based in community knowledge, as well as in critical race, feminist, and decolonial scholarship. With regard to the concept of resilience, I have been an advocate of its introduction to public health in response to community resistance to deficits-based knowledge production and have resisted its appropriation by academia in reinforcing status quo power relations.

Queer Theory Perspectives on Intersectionality Queer theory has commonalities with intersectionality: they both dialogue with feminist scholarship, offer nuanced ways of conceptualizing identity, and demand structural analysis. However, these theories emerged from

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differently situated groups and in different, but parallel contexts. As mentioned earlier, Crenshaw’s (1989) initial articulation of intersectionality centred the diverse experiences of U.S. Black women within political organizing and academic analysis. In contrast, queer theory emerged as a critique of identity-based politics and organizing within lesbian, gay, bisexual, and trans (LGBT) movements. Although queer theory seeks to be broadly applicable, it has faced criticism for upholding whiteness, erasing experiences of Indigenous people and people of colour, and reproducing settler colonialism (Driskill, 2010). Queer theory analyses categories of difference (for example, sexuality and gender) to reveal the ways in which state power governs social relations. As Marcus (2005) explains, “sexuality can mean affect, kinship, social reproduction, the transmission of property, the division between public and private, and the construction of race and nationality” (p. 206, italics in original). Using sexuality as an entry point, queer theory now examines a range of “state-sanctioned disciplinary acts concerning race, class and gender identity positions” that culminate in notions of “undesirable sexual acts” or their outcomes, such as “‘too many’ poor children” (Yekani, Michaelis, & Dietze, 2010, p. 101). Queer theory interrogates expressions of power that privilege, introduce, create, or require normalcy. Drawing from queer theory and intersectionality, Duong (2012) illustrates the benefits of transcending historically and structurally constituted identity categories. In the 2008 California same-sex marriage debate, Blacks (and, more specifically, Black churches) and queers were assumed to be in conflict. However, Duong’s more nuanced analysis underscores the limits of identity-based framings: “The problem is not with blacks or queers; it is with people who hold certain normative visions of the world, whether queers, blacks, both, or neither … [W]e should not ground the intersectional contours here exclusively on the demographic fact that these are gays, blacks, and churches … but, instead … [on] the contested worldmaking practices and posited visions of justice, which in fact underwrite political solidarities and alliances” (Duong, 2012, p. 383). Duong articulates the need to shift analysis of issues from those based on contested identity categories to nuanced understandings of individuals and groups seeking to maintain or disrupt normative ways of being. Queer theory thereby “emphasizes affinity and solidarity over identity” and connects people seeking to disrupt norms, regardless of identity (Marcus, 2005, p. 197). As other scholars have discussed, intersectionality and queer theory are complementary: “In many ways, queer intersectionality is simply the

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necessary tautology: intersectionality is inevitably disruptively queer, and queer must be analytically intersectional” (Rahman, 2010, p. 957). These two theories provide the starting point for the principles we propose to guide and strengthen resilience research in the service of social justice. Guiding Principles for Resilience-Based Approaches to Gay Men’s Health Research Drawing from the legacy of gay men’s health and social activism, and from intersectionality and queer theory, we now describe in detail our five complementary principles to guide resilience-based approaches to health research, focusing on their applicability to gay men’s health (figure 16.1).

Incorporate Historical and Structural Analysis At one time historical analysis was seen as crucial to public health research; however, in the present day its absence is salient (Chowkwanyun, 2011). Historical and structural analysis is central to understanding the changing social contexts in which health and inequities are (re)produced, and it can make visible past processes that have led to contemporary circumstances. Still, as many scholars remind us, history is often told in ways that erase the lives and stories of people who challenge dominant ways of being. Indeed, queer theory, intersectionality, sexuality studies, and Indigenous scholars all emphasize the importance of interrogating the histories of contemporary social, political, and economic structures (for example, L.T. Smith, 2012; Wahlert, 2012; Weeks, 2010). Thus it is important to evaluate historical accounts, their claims, and who benefits from these claims, and to tell histories in ways that encourage individuals and entities in the present to respond to historical injustices (Young, 2011, p. 209). Historical and structural analysis is key to interrupting unjust social relations based on inequitable distributions of power. Young (2011) uses the term structural injustice to underscore the historically contingent social processes that produce both domination and privilege. As she explains, these “social processes put large groups of persons under systematic threat of domination …, at the same time that these processes enable others to dominate or to have a wide range of opportunities for developing and exercising capacities available to them” (p. 52). Historical and structural analysis disrupts the tendency in much of contemporary health research to frame questions and approaches based on individualized notions of health and illness. For example, a historical analysis

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AFFIRM RESISTANCE CENTRE IN THE MARGINS

INTERSECTIONALITY QUEER THEORY GAY MEN’S HEALTH ACTIVISM

THEORY & ACTIVISM

INCORPORATE HISTORICAL & STRUCTURAL ANALYSIS FOREGROUND INTERLOCKING SYSTEMS OF DOMINATION

ENGAGE IN SELF-REFLEXIVE PRAXIS

RESILIENCE RESEARCH FOR SOCIAL JUSTICE AND HEALTH EQUITY

PRINCIPLES

Figure 16.1. Conceptual framework for resilience research applied to gay men’s health.

of the notion of internalized homophobia reveals that it was originally considered a problem of individual heterosexual people who were seen to have adverse reactions to homosexual people they encountered. Internalized homophobia was subsequently transformed into a description and a diagnosis for homosexual people, including gay men (Aguinaldo, 2008). This historical perspective shows how the discourse of internalized homophobia maintains heterosexism as a system of domination by focusing on select people, labelled as homophobic, who are seen as exceptions in a society that is otherwise free of homophobia. As discussed earlier, “the idea of IH [internalized homophobia] perpetuates the injustice of privatizing sociocultural problems, in this case, homophobia and heterosexism” (Tilsen & Nylund, 2010, p. 98). Applied to resilience research, historical and structural analysis draws attention to ways in which the markers used to infer and measure resilience inadvertently advance, rather than disrupt, deficit-based approaches by blaming some gay men for their poorer health outcomes. For example, remaining HIV-negative is a common indicator of resilience in gay men’s health research. Its usage ignores historically contingent structural processes that heavily influence when, how, and why HIV risk is concentrated among certain communities of gay men. Using HIV status as a marker of resilience creates new binaries of “successful” and “unsuccessful” (or “deserving” and “undeserving”) gay men, thereby reifying the notion that preventing HIV is firmly within individual control. Yet we know that a host of structural factors, including poverty, trauma, racism, and sex

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education that ignores the sexual experiences of many gay men, are all associated with increased HIV exposure (Stall, Friedman, & Catania, 2008).

Foreground Interlocking Systems of Domination Systems of domination refer to “historically constituted structures of domination such as racism, colonialism, patriarchy, sexism, capitalism, and so on” (Dhamoon, 2011, p. 234) and to the violence produced by these structures. Queer and intersectionality theory – and related activism – all emphasize that analysis of these interlocking systems is integral to struggles for a just society. Analysis of these systems is fundamentally about the workings of power “that constitute, govern, and counter difference” (Dhamoon, 2011, p. 234). The foregrounding of systems of domination, in concert with the examination of interactive processes of differentiation, enables delineation of “the specificities of power, including an analysis of what practices of differentiation do to social relations, how difference making organizes subjects in varied and changeable ways, how subjects perform and resist modes of differentiation …” (Dhamoon, 2011, p. 235). There are several examples of interlocking systems of domination in current gay men’s health practice and research, although knowledge of these systems varies, as do efforts to resist them. Dean (2010), for example, considers processes of differentiation and systems of domination that have an impact on identity practices of U.S. heterosexual men, through analysis of what he terms “racial heterosexual masculinities.” He illustrates how racism and heterosexism interlock in identity-making practices, noting that the dominant (racist, heteropatriarchical) perception of Black men as hypersexual and heterosexual means that they “can rely on their racial identity to code them as exaggeratedly heterosexual masculine men,” whereas non-Black heterosexual men “rely on strong boundaries of social distance to project a clear heterosexual masculinity” (p. 131). Dean shows how nuanced experiences of unmarked categories – such as heterosexual masculinity – can be illuminated by studying them in concert with other oppressive systems (in this case, racism). Interlocking systems of domination are also visible in sexual health work with gay men. Over the past decade gay, bisexual, and queer trans men in Ontario have organized to challenge the cissexism that erases trans men’s needs and experiences within gay men’s HIV prevention, as evidenced, for example, by the absence of sexual health and HIV prevention information pertinent to trans men’s bodies (Scheim, Ware, Redman, Marshall, & Giambrone, 2014). In many cases, gay men’s sexual health programs have

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developed without trans men, in part because of the historical practice of denying transition-related care to trans men who express sexual desire for other men (Scheim et al., 2014). In response to the needs of trans men in Ontario, the Gay/Bi/Queer Trans Men’s Working Group, composed largely of gay, bisexual, or queer trans men, was established in 2006. The working group produced the first sexual health guide for trans men whose sexual partners are men, titled Primed. This guide has since been translated into several languages and spurred the development of sexual health guides for many trans populations (Scheim et al., 2014). Despite these successes, gay, bisexual, and queer trans men have ongoing concerns about the absence of adequate supports for trans men, men racialized as non-White, Indigenous men, and bisexual men (Scheim et al., 2014). Efforts to respond to these concerns include intentionally recruiting diverse trans men within the working group itself and engaging diverse trans men as models for photographs used in the Primed resource that they developed. In the context of resilience research in gay men’s health, the foregrounding of systems of domination calls for analyses to move beyond the single category of sexuality to consider how heterosexism interlocks with other oppressive systems. Doing so shifts the focus from individual identities towards analysis of structural and interpersonal processes of identity formation, and creates new opportunities for resisting the reproduction of social inequities.

Affirm Resistance People targeted by oppressive systems are not simply dominated; they, too, exert power, and in many cases this power is intentionally enacted to resist and disrupt domination (hooks, 1989; Mullings, 2005). Often acts of resistance are criminalized or otherwise disparaged by dominant social actors and institutions (Cohen, 1997). Yet, critical social science scholars working towards social equity (for example, Mullings, 2005) regard resistance as a positive outcome within a community and as an indicator of social and political engagement. Resistance is also correlated closely with health; as Wade (1997) notes, it is “both a symptom of health and health inducing” (p. 24). Thus, resilience research is a natural opportunity to affirm resistance. Collins (2000) emphasizes that resistance takes many forms, including both the work of group survival and direct confrontations with institutional and state power. However, it is important to avoid assumptions about which actions constitute resistance (Cohen, 2004). As such, it is imperative that

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people in the margins, that is, people who most directly experience harmful impacts of systems of domination, are actively engaged in discussions of resistance within their specific communities (hooks, 1989). Affirming resistance supports the struggles of people and communities in the margins and can oppose institutional efforts to disrupt acts and voices of resistance. For example, Eric Rofes (1999) called for research to regard aspects of gay men’s communities, such as “gender play, kinship networks, and sexual cultures[,] … as adaptive survival strategies which have served us well” (p. 11). In addition, research with sexual minority youth has shown that many of their survival strategies are often negatively perceived by authority figures, such as parents or teachers, which can result in these youth being “punished or ostracized for exactly those behaviours that help them” (Harvey, 2012, p.  5). Prevailing resilience research discourages and erases these acts of resistance. Indeed, this research often uses indicators, such as school performance and relationships with authority, which classify the youth who are enacting resistance as faring poorly. Resilience research also uses assimilatory outcomes, such as developmental milestones and psychological scale measures that do not make space for the possibility of acts of resistance. Resistance can occur at individual and group levels (Collins, 2000), including group-level resistance to state-sponsored projects (Kinsman, 2001). For example, in Canada the colonial-settler project has, from its inception, violently imposed Eurocentric concepts and practices of sexuality and gender that usurped Indigenous traditions of two-spirit people. In response, Indigenous people have sought to reclaim traditional notions of sexuality and gender within their communities and to create opportunities for the celebration of contemporary two-spirit people (Kinsman, 2001, p. 224). In addition, the Royal Canadian Mounted Police in the 1950s and 1960s created “objective” scientific technology to systematically identify and subsequently fire lesbians and gay men who were working in federal public service (Kinsman, 2001, p. 211). In response, gay men and lesbians resisted these efforts by refusing to provide names of other gay men and lesbians and by altering their social behaviours so they would be harder to identify. Resistance must be affirmed; yet it is important also to be attentive to the negative health impacts of ongoing resistance – particularly those related to chronic stress – among individuals and communities who employ them (Mullings, 2005, p. 9). Resistance must be affirmed as a vital strategy used by communities that experience violence, alongside other strategies, such as providing direct help, structural analyses, and solidarity building (Spade, 2013, p. 8). In order to recognize the ways in which people and communities

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enact resistance, resilience research must create alternative indicators of success that move beyond researcher-derived assimilatory notions and are instead inclusive of gay men’s diverse lived experiences of resistance.

Centre in the Margins Western societies generally only value “knowledge” generated by professionals and researchers using purportedly objective means (Collins, 2000; Lorde, 1984/2007). Centring in the margins is a principle that asserts the necessity of knowledge generated by those who experience and resist social marginalization, where reality is seen “from the outside in and from the inside out” (hooks, 1984, as cited in hooks, 1989, p. 206). Centring in the margins recognizes embodied knowledge, which “emphasize[s] and celebrate[s] the voices, experiences, situated knowledge, and perspectives of those traditionally marginalized and erased …” (Dhamoon, 2011, p. 233). As Bannerji (2000) elaborates, knowledge generated from the margins is often most relevant to social justice aims because “the possibilities for constructing a radically different Canada emerge only from those who have been ‘othered’ as the insider-outsiders of the nation” (p. 81). Centring in the margins also emphasizes accountability to people in the margins, which dramatically shifts the focus and purpose of knowledge production. In the context of gay men’s health and HIV, centring in the margins dovetails with, and extends calls for, community-based (participatory) research and the principle of GIPA/MIPA. Both of these approaches represent the commitment of professionals to include, in knowledge production and decision-making, PHAs and people from the communities that are being researched. Although both of these ways of producing knowledge incorporate the perspectives of those most affected, too often key decisionmaking power is still concentrated among those in the centre rather than in the margins. For example, persistent barriers related to stigma and the episodic nature of HIV-related illness (Travers et al., 2008), alongside the professionalization of AIDS service organizations, have at times eclipsed the knowledge of those most directly affected by HIV (Adam, 2011). Many organizations struggle to systematically centre the needs of individuals experiencing high degrees of marginalization. The Sylvia Rivera Law Project is an organization with a decision-making structure that purposely centres in the margin. This structure helps to enact the concept of “trickle up” social justice, in which the needs of people experiencing multiple forms of marginalization are prioritized (Spade, 2011; Sylvia Rivera Law Project, 2013). Underlying this concept is the idea that the changes

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that serve the needs of groups harmed by multiple systems of domination will also trickle up to those with more privilege. For example, as a collective, the Sylvia Rivera Law Project makes major organizational decisions by giving all members – including volunteers, staff, and people who use services – an equal vote. In addition, the project supports centring in the margins via initiatives to support capacity development and opportunities for leadership and training among its members.

Engage in Self-Reflexive Praxis Research is a productive force that plays an active role in creating images of the people and groups it studies (Holt, 2013). Research shapes the interactions among institutions (for example, social welfare, health, and education systems; media; and government bodies) and the understandings of people, groups, communities, and their needs. Research has been a site of violence against populations marked as different, including Indigenous peoples (L.T. Smith, 2012) and sexual and gender minorities (Minton, 1997). Limited attention has been paid to self-reflexive praxis as a tool to prevent harm in the first place and to identify and redress harms that occur. Self-reflexive praxis is an orientation to activism, research, and professional engagement that combines theory and practice for social justice. It requires ongoing learning; personal reflection on the topics we choose to research, the people with whom we work, and the approach we take to this work; and honest conversations with our research and practice teams about whose voices, experiences, and concerns are being centred, and where the decision-making power lies. Thus, reflexive praxis acts as a form of accountability, especially to those whose experiences, social locations, and relationships with systems of power are less privileged and are different from our own (Reynolds, 2010). Self-reflexive praxis encourages us to consider the impact of our social locations and experiences of domination and privilege on knowledge production, including the knowledge that is produced, the ways in which it is produced, and the voices involved in its production (Collins, 2000; IbáñezCarrasco, 2012). When meaningfully adopted as an essential component of research, self-reflexive praxis creates opportunities to unsettle the ways in which privilege operates in the practice of research and to disrupt oppression within our daily lives. Self-reflexive praxis opens up the often overlooked questions about whether and how we are resisting hierarchies of power or inadvertently reproducing inequities, and it requires us to examine

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both our intentions and our impacts, which may or may not be consistent with our goals. In the context of community-based (participatory) research, self-reflexive praxis may help scholars to “become transparent, sincere and trustworthy to the communities we investigate” and to “accept that seemingly radical and diasporic clusters of individuals can amount to collective knowledge, skill, and experience – that they have something to teach us and they are not only sources of information” (Ibáñez-Carrasco, 2012, p. 316). This praxis enhances efforts to centre in the margins and disrupt the primacy of professionalized knowledge. It supports us to consider diversity within groups, thereby resisting homogenization of the groups of people with whom we work (for example, gay men) and increasing awareness of those whose voices are being left out of decisions, programs, and information. Engaging in self-reflexive praxis is an important strategy to first articulate and then hold oneself accountable to social justice values. In the context of our conceptual framework, engaging in self-reflexive praxis is an opportunity to revisit the other principles presented herein, identifying both their potential for the specific project being considered and the ways in which researchers have or have not implemented them throughout their work. Community-based (participatory) research, participatory action research, and Indigenous and decolonizing methodologies, as discussed in greater depth elsewhere in this volume, each have mechanisms in place to support self-reflexive praxis.

Intertwining Principles These five principles are intertwined and complement one other to emphasize important areas for consideration by people engaged in knowledge production and research. They are not presented in a definitive order here and can be applied in multiple ways to support resilience research for social justice. We intend that these principles reinforce GIPA/MIPA and create space for, and ascribe value to, the experiential knowledge of diverse sexually active people within gay men’s communities. Figure 16.1 highlights intersectionality, queer theory, and gay men’s health activism as the foundation of the five principles and illustrates the continuity among the principles. Historical and structural analysis informs understandings of the interlocking nature of systems of domination. Rec­ ognizing resistance requires the analysis of interlocking systems and their impact on people’s lives, and it requires centring the experiences of people

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in the margins. In turn, centring in the margins deepens our understanding of the simultaneous impacts of these systems and includes historical and structural analysis to identify people who have been systemically marginalized and thereby excluded from knowledge production and decision-­ making. The principle of self-reflexive praxis fosters the implementation of the other principles by encouraging their ongoing consideration. For example, centring in the margins requires a reflexive process about the systems of domination with which we are engaging and that we are reproducing in our work. This principle recognizes that we are often simultaneously subject to and complicit in various forms of violence (Lorde, 1984/2007; Spade, 2011). Taken together, the five principles inform a research process that is itself consistent with the outcomes that it desires: programming, policies, and interventions that support gay men, and diverse men who have sex with men, in living self-determined healthy lives, free of interpersonal, institutional, and structural violence. Principles in Action We chose three examples of articles from the gay men’s health resilience literature (Bruce, Harper, & Adolescent Medicine Trials Network for HIV/ AIDS Interventions, 2011; Gwadz et al., 2006; Herrick et al., 2013) to demonstrate how these principles may be applied to existing work and to inform future research. These papers are based on three separate data sets from the United States and exemplify common quantitative and qualitative approaches to resilience research. Each paper has contributed to the burgeoning scholarship on resilience among gay men, and each considers a different subgroup of gay men, uses different methods, and conceptualizes resilience in distinct ways. We offer a brief description of each paper’s objectives and methods; highlight areas where the five principles described have been taken up by the authors; and explore areas that may be strengthened by the use of the principles. We do not intend to be exhaustive in our application of the five principles to these papers. Our readings of these papers focus on four researchrelated domains, which are evident in these papers and in the broader resilience literature and have implications for the ways in which resilience is understood: conceptualization of individual and group identities; framings of health, risk, and resilience; operationalization of resilience and adversity; and reproduction of hegemonic norms and values. Throughout this section we use the language and acronyms of each paper’s authors. Many of the points we raise can be extrapolated to the wider body of

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resilience literature with gay men and, even more broadly, to gay men’s health research. It Gets Better: Resolution of Internalized Homophobia over Time and Associations with Positive Health Outcomes among MSM (Herrick et al., 2013) studies the association between internalized homophobia (IH) and health outcomes among 1,551 participants enrolled in the Multicenter AIDS Cohort Study that was conducted in four large U.S. cities. This study infers resilience in participants who resolved IH, as measured by a previously validated nine-item scale. Participants completed the IH scale with reference to two time periods in their life: upon first realization of samesex attraction and in the past twelve months. Participants were classified as “having” IH if they indicated that they strongly agreed or agreed with one or more of the nine items. Associations were examined between IH resolution (participants who indicated early IH and then no IH in the past twelve months) and several health-related variables: (1) stimulant drug use, (2) psychological distress, (3) stress, (4) intimate partner violence, (5) unprotected anal intercourse with a non-main partner in the past six months, and (6) syndemics (co-occurrence of two or more of these variables). Operating without a Safety Net and Emerging Adults’ Experiences of Marginalization and Migration, and Implications for Theory of Syndemic Production of Health Disparities (Bruce et al., 2011) presents a qualitative study of fifty-four HIV-positive gay and bisexual young men (aged seventeen to twenty-four years), predominantly African American (57 per cent) and Latino (22 per cent), across four U.S. urban centres. The authors qualitatively explore “syndemic production” of health disparities among gay men. This theory holds that gay men’s health disparities are “socially produced through … marginalization associated with early male adolescent socialization in heterosexist environments and the stressors associated with migration to large cities with sizeable gay communities” (p. 367). They examine gay and bisexual men’s experiences of “risks,” resilience, and health behaviours in relation to gay-related stigma and marginalization, and migration to gay-identified communities. The paper’s results describe men’s accounts of syndemic phases (Stall, Friedman, & Catania, 2008) and outline four themes of risk and resiliency. Resilience among Young Men Who Have Sex with Men in New York City (Gwadz et al., 2006) reports on levels of adaptive functioning among a diverse group of young men who have sex with men (YMSM), aged seventeen to twenty-eight years, who reported sexual contact with a man one or more times in the past six months in New York City. The paper, which draws on psychological concepts of resilience, evaluates differences between the

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YMSM who had experienced high childhood adversity (indicated by fosterhome placement) and those who had not, based on seven indicators: (1) formal employment, (2) stable housing, (3) school enrolment or high school completion, (4) no criminal justice system involvement, (5) no clinical depression, (6) social support, and (7) fewer than three days of hard drug use in the past month.

Conceptualization of Individual and Group Identities Both intersectionality and queer theory highlight implications of the ways communities are framed in research, how the resulting knowledge can be used, and how researchers and service providers understand the needs of these diverse populations. One such challenge within gay men’s health research is the framing of participants’ sexual identities and behaviours: the ubiquitous term MSM refers (albeit imprecisely) to sexual behaviour but does not capture the richness and diversity of the ways in which these men identify and experience their sexualities (Young & Meyer, 2005). For example, MSM who identify as gay may be socially networked in ways that are different from those who identify as two-spirit, queer, straight, or bisexual. As is common in articles based on the Multicenter AIDS Cohort Study, Herrick et al. (2013) do not report the sexual identities of their participants, and they use the terms MSM and gay and bisexual men interchangeably. In doing so, participants’ self-determined identities are erased, along with potentially important differences in social and sexual experiences of adversity and risk. These differences are shaped by experiences of marginalization and privilege related to sexual identities and their intersections with simultaneous social identities. For example, there may be important differences in the meaning of resilience across participants’ sexual and social identities and social networks. The analysis presented by Herrick et al. does not consider simultaneous aspects of men’s identities and the ways in which they may affect the resolution of IH, beyond reporting that “a greater proportion of men with current IH were younger, racial/ethnic minorities, less educated and lower earners compared to those with no IH” (p.  1426). Herrick et al. thus do not acknowledge histories of resilience (including resistance) within communities that coalesce around identity markers beyond sexuality, such as race and indigeneity. One way to account for the multiplicity of categories and systems that affect individual experiences is to include measures of chronic stress, historical trauma, and institutional and interpersonal discrimination that are grounded in intersectionality and gay men’s resistance. Including these types

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of measures would enhance the understanding of the impacts of oppressive systems and processes of differentiation on people’s experiences of resilience and their opportunity to demonstrate resilience indicators. For example, a study that captures experiences of heterosexism and colonialism could disrupt assumed homogeneity with the sexuality category and illuminate possible differences between participants’ experiences of both resilience and stress related to their sexual identity. Another challenge in gay men’s health resilience research is conceptualizing racial and ethnic identity in meaningful ways. In their introduction Bruce et al. (2011) discuss the simultaneity of sexual and ethnic identity development, yet they do not take up this issue in their aims or analyses. Indeed, they explicitly oversample African American and Latino men to address the absence of men of colour in syndemic research, and they include race/ethnicity identifiers alongside participant quotations, but they fail to provide a race-conscious analysis that asks “how racialization contribute[s] to the problem at hand” (Ford & Airhihenbuwa, 2010, p. 1391). This omission is perplexing given the paper’s rationale, stated limitations, and call for future syndemic research to “consider racial identity and responses to racial stigma among young gay men of color” (p. 376). The mere inclusion of men of colour in research does not, alone, advance our understanding of how racial identity and racism affect gay men’s marginalization, identity development, resilience, or health. Moreover, the absence of a race-conscious analysis can do harm: it advances knowledge production that erases the importance of race-related factors (most notably, racism) by leaving them unexamined (Ford & Airhihenbuwa, 2010) and makes it impossible to advance intersectional understandings that are surely important for eliminating health disparities that negatively affect gay men of colour. Alongside a race-conscious orientation towards research, a historical and structural analysis aids researchers in considering the reasons that study samples are chosen and the ways that they are described; for example, a historical analysis reveals that the category MSM was developed by medical authorities to respond to a sexually transmitted virus. Although there may be some merits to the use of the term, it is not directly transferable into the context of resilience research, which necessarily examines the social aspects of men’s lives. We recommend that researchers account for the decisions they make regarding the language they use to describe their samples, and regarding the identity categories they choose to include or exclude when reporting. It is also important to affirm self-­naming by individuals and groups, which can be an act of resistance (Collins, 2000). Lastly, self-reflexive praxis may help researchers to consider

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different approaches to classifying individual and group identity categories, and to challenge the assumptions they make about within-group diversity in these categories.

Framings of Health, Risk, and Resilience Health outcomes, including resilience, are produced, in part, by social structures that have an impact on risk contexts, health information, and health care. However, gay men’s health resilience literature often relies on notions of individual risk and resilience without a structural analysis (Chown & Malcoe, 2012). With the exception of a single reference to stigma, Gwadz et al. (2006) do not discuss the well-documented structural forces that affect the health risks experienced by YMSM, including interlocking systems of heterosexism and racism (for example, Bowleg, 2013; Collins, 2004). Instead, their paper focuses on individual behaviours as explanations for elevated rates of poor health outcomes among YMSM. Gwadz et al. also adopt an individual conceptualization of resilience, measured by the achievement or absence of individual outcomes, as described earlier. Adopting this individualistic framing leaves the reader with a one-dimensional understanding of how risk operates in the lives of YMSM, which elides the marginalization that YMSM may experience and instead portrays them as individuals who make poor behavioural choices. Gwadz et al. (2006), however, do briefly address structural considerations in their discussion, where they note that policing practices continue to disproportionately target queer people, people of colour, and queer people of colour. Gwadz et al.’s discussion of transgender YMSM also mentions some structural factors that affect the lives of transgender YMSM with regard to accessing care. The discussion section provides a few examples of structural issues, including the possibility of homophobia within families of origin that may lead to foster-care placement, and a note for future research to consider “the degree to which resilience is dependent on structural factors, and how these can be addressed” (Gwadz et al., 2006, p. 19). In contrast to the mostly individual framings implicit in Gwadz et al.’s (2006) research, Bruce et al. (2011) emphasize the structural production of risk; they conceptualize both the behaviours (for example, using substances to cope with stressful situations) and the environment (for example, elevated rates of HIV within concentrated sexual networks) within a structural context (albeit, as noted earlier, one without attention to processes of racialization). Bruce et al. also highlight participants’ own explanations of risk experiences that foreground structural factors for gay and bisexual

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men, such as the absence of support as they navigate gay men’s communities, and the variation in risk by place. Intersectionality and queer theory emphasize the value of self-­determined notions of health, risk, and resilience, and the need to account for structural contexts, including systems of domination and privilege. Centring in the margins provides researchers with an opportunity to learn with and from the populations whose health they seek to support.

Operationalization of Resilience and Adversity In the extant literature, resilience and adversity are almost always defined by academic researchers; individuals’ own experiences are not centred (Chown & Malcoe, 2012). For example, Herrick et al. (2013) categorize resilient individuals as those who previously “had” IH, yet do not report any current indicators of IH at the time of study participation. As the authors note, it is a limitation to consider IH a dichotomous variable based on presence or absence of one or more scale indicators, because “internalized feelings of shame or inadequacy are much more complex than a dichotomous variable can capture” (p. 1428). Moreover, the theorizing of IH as an individual attribute that gay and bisexual men have or resolve for themselves ignores the pervasive heterosexism that affects these men’s lives and dismisses the emancipatory potential of collective acts of resistance in overcoming heterosexism, internalized or otherwise. In contrast, Gwadz et al. (2006) adopt a concept of resilience that is not dichotomous and that includes several domains of assessment. Their concept is based on extant literature and reflects a social determinants of health model, which, as discussed, too often does little to account for structural production of risk and resilience, and may not be consistent with the values of the YMSM in their study. As Wexler et al. (2009) note, this reliance on models that potentially clash with the worldviews of study participants is a trend that characterizes much resilience research with marginalized youth. The principle of centring in the margins emphasizes a starkly different approach, encouraging researchers to engage people within the study population (or with those comparable to the study population) in order to capture emic understandings of their lives. Adopting this principle would likely produce new knowledge of resilience, including of the types of challenges that YMSM themselves feel they face. Neither Herrick et al. (2013) nor Gwadz et al. (2006) uses resilience concepts that affirm resistance. Take the case of Gwadz et al.’s use of stable housing as a marker of resilience. For YMSM, it is plausible that

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stable housing may be incompatible with other life-affirming goals. For example, leaving a family home may provide YMSM greater access to a community of their peers, or an escape from abusive home situations, as described by extant research, including participants in the Bruce et al. (2011) study. Unstable housing among YMSM is largely produced by structural injustice (Young, 2011), including an absence of social programs that provide adequate housing for people experiencing abusive family situations. For these YMSM, leaving “stable” housing situations that are violent or harmful (which results in them being classified as less resilient) may actually be an indication of positive resistance. Yet these possibilities are not addressed in Gwadz et al.’s research. Gwadz et al. also used the indicator of high school completion or attendance but did not account for the copious research suggesting that structural factors push youth, especially youth of colour, out of school, a phenomenon often referred to as “push-outs” (Dignity in Schools, 2011). People, including YMSM, may leave school to support themselves or their families financially; to avoid, for example, heterosexist, racist, and ableist school systems and curricula; and/or to enact resistance (Wexler et al., 2009). The measures in Gwadz et al.’s (2006) paper and many others like it suggest that resilience occurs among participants who achieve functioning that is deemed positive by dominant discourses, actors, and institutions. It is crucial to consider the types of norms and values that are being reinforced by these measures. Future research that centres values held by those in the margins and is conducted by researchers who engage in self-reflexive praxis as elucidated earlier may help research teams to develop measures of resilience that are consistent with men’s own understandings.

Reproduction of Hegemonic Norms and Values Herrick et al. (2013) examine the relationship between internalized homophobia (IH) resolution and “positive” health outcomes, such as no or low stressors of daily life due to job, finances, health, crime, etc.; less-thanmonthly use of stimulants; and no or low sexual compulsivity. The assumption that these behaviours are positive is based on decontextualized public health assessments of health, wellness, and risk, which are often inconsistent with the experiences of gay and bisexual men (Dowsett, 2007). Although Herrick et al. recognize that disadvantage and deficit are culturally defined, they do not extend this observation to their classification of positive and negative outcomes.

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For Herrick et al. (2013), the study of resilience is important because it can be used to identify gay and bisexual men’s successful strategies to manage or avoid negative health outcomes; these strategies can, in turn, be used “as part of interventions to support greater resiliency” (p. 1424). The authors’ approach recognizes the past and ongoing work of gay and bisexual men; however, they also suggest that academic research is needed to formally “discover” and “promote” successes. As Ibáñez-Carrasco (2012) argues, this suggestion may delegitimize gay men’s knowledge and experiences, which have not been concretized via academic research. Gay men’s health organizations, particularly in the context of the HIV epidemic but also in domains of well-being beyond HIV, have been doing this work for years, often with limited funding and in the face of multiple barriers. It is important for resilience researchers to consider how their studies may usurp community knowledge and be counter-productive in attempts to support and affirm the work of gay men (Ibáñez-Carrasco, 2012). At the outset, Herrick et al.’s (2013) paper states that it seeks to increase understanding of the ways in which gay and bisexual men avoid or resolve “negative” behaviours. The authors allude to the possibility that resolution of IH may be associated with known protective factors, such as community connection, but these are left unexamined. Further, as the authors state, their study does not explain how gay or bisexual men resolve or avoid IH, a contribution that would serve to advance current understandings of the processes by which IH is resolved. Instead, the paper validates the notably criticized (for example, Puar, 2010) assertion that “it gets better” for gay and bisexual youth, an adage coined as a suicide-prevention campaign aimed at LGBTQ youth who experience bullying as a result of their sexuality or gender. The “It Gets Better” campaign, led by Dan Savage, has been criticized for its reproduction of hegemonic values related to class, whiteness, and upward mobility (Puar, 2010). By employing selfreflexive praxis and centring in the margins, researchers can work to ensure that the participants, and groups they represent (that is, gay men), benefit from the research and that future research advances resilience knowledge in ways that could inform interventions or policy change. Conclusion and Implications As an ongoing area of activism and a burgeoning area of scholarship within gay men’s health, the concept of resilience contains many opportunities to transform practice and research in the field. This chapter presents a

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conceptual framework that provides guidance to those who are interested in exploring resilience in ways that reflect gay men’s activism and affirm diverse gay men’s lives. The framework we present challenges researchers and public health practitioners who use constructs of resilience; organizations and funders that participate in or support resilience programs and research; and journals that publish resilience research, to adopt notions of resilience that serve to support and strengthen diverse gay men’s health and well-being. The five principles we delineate provide tools to support critical analysis of existing scholarship and research in progress and to engage gay men in ongoing knowledge production relating to resilience. We hope that this writing informs further resilience-based research with gay men that will incorporate historical and structural analysis, foreground interlocking systems of domination, affirm resistance, and centre in the margins. Our chapter also illustrates the need for self-reflexive praxis and echoes calls to reconsider dominant academic forms of funding, knowledge production, and translation. Although we apply our conceptual framework to resilience research in gay men’s health, the spirit of the principles offered here might be useful in resilience research with other populations. As the public health and mental health fields continue to expand their use of this concept, the framework presented here offers key considerations that extend the potential of resilience work to advance social justice.

NOTES 1 The term MSM is commonly used as an epidemiological category to describe men who have sex with other men, where sex is undefined but assumed to be specific to penile-anal intercourse. This term diminishes attention to social aspects of men’s lives, including sexuality, gender, and culture (Young & Meyer, 2005), and assumes that anal sex is the defining behaviour of gay men’s lives. While we use the term gay men throughout, we acknowledge that it too has limitations in that it homogenizes a diverse group of men who identify their sexuality in many ways. Because the bulk of the research reviewed here focuses on men who identify as gay, and the first author’s experience has taken place largely in organizations with a primary focus on gay men’s health, we believe our work is perhaps relevant more to men who identify as gay than to other men who have sex with men and identify in other ways. Throughout this chapter the term gay is used when speaking generally; however, when discussing specific examples in the literature, we preserve the terms used in the original published works.

An Intersectionality Approach to Resilience Research  469 2 The term queer is used by a diverse group of people who do not define their sexuality and/or gender within the normative, binary categories prescribed by Western medical and state authorities. In the context of queer theory, this term “has become a compact alternative to lesbian-gay-bisexual-transgender, but it also emphasizes affinity and solidarity over identity” (Marcus, 2005, p. 197). 3 The acronym PHAs and the phrase that it represents, people living with HIV/AIDS, evolved from the earliest advocacy, in 1983, to secure a role for people diagnosed with HIV or AIDS, in response to the epidemic (OAN, 2011; Roy, 1995). In Ontario the acronym PHAs has been used within communitybased organizing and research since at least 1995 (Roy, 1995) and continues to be used by the Ontario AIDS Network (OAN, 2011) to emphasize that people living with a diagnosis of HIV or AIDS make ongoing contributions to the HIV sector in the form of activism and research. REFERENCES Adam, B.D. (2011). Epistemic fault lines in biomedical and social approaches to HIV prevention. Journal of the International AIDS Society, 14(2 Suppl 2), S2. Medline:21968038 http://dx.doi.org/10.1186/1758-2652-14-S2-S2 Aguinaldo, J.P. (2008). The social construction of gay oppression as a determinant of gay men’s health: “Homophobia is killing us.” Critical Public Health, 18(1), 87–96. http://dx.doi.org/10.1080/09581590801958255 AIDS Action Now! (AAN!). (n.d.). History. Retrieved from www.aidsactionnow .org Bannerji, H. (2000). Geography lessons: On being an insider/outsider to the Canadian nation. In The dark side of the nation: Essays on multiculturalism, nationalism and gender (pp. 63–86). Toronto: Canadian Scholars’ Press. Bowleg, L. (2013). “Once you’ve blended the cake, you can’t take the parts back to the main ingredients”: Black gay and bisexual men’s descriptions and experiences of intersectionality. Sex Roles, 68(11–12), 754–67. http://dx.doi.org /10.1007/s11199-012-0152-4 Brown, P., Zavestoski, S., McCormick, S., Mayer, B., Morello-Frosch, R., & Gasior Altman, R. (2004, January). Embodied health movements: New approaches to social movements in health. Sociology of Health & Illness, 26(1), 50–80. Medline:15027990 http://dx.doi.org/10.1111/j.1467-9566.2004.00378.x Bruce, D., Harper, G.W., & Adolescent Medicine Trials Network for HIV/AIDS Interventions. (2011, August). Operating without a safety net: Gay male adolescents and emerging adults’ experiences of marginalization and migration, and implications for theory of syndemic production of health disparities.

470  Sarah Chown and Lorraine Halinka Malcoe Health Education & Behavior, 38(4), 367–78. Medline:21398621 http://dx.doi .org/10.1177/1090198110375911 Chowkwanyun, M. (2011). The strange disappearance of history from racial health disparities research. Du Bois Review, 8(1), 253–70. http://dx.doi.org /10.1017/S1742058X11000142 Chown, S., & Malcoe, L.H. (2012, November). Intersectional perspectives on resilience in gay men’s health literature. Paper presented at Ontario HIV Treatment Network Research Conference, Toronto. Retrieved from http://conference.ohtn .on.ca/past-conferences/2012/Presentations/136.pdf Cohen, C.J. (1997). Punks, bulldaggers and welfare queens: The radical potential of queer politics? GLQ: A Journal of Lesbian and Gay Studies, 3(4), 437–65. http://dx.doi.org/10.1215/10642684-3-4-437 Cohen, C.J. (2004). Deviance as resistance: A new research agenda for the study of Black politics. Du Bois Review, 1(1), 27–45. http://dx.doi.org/10.1017 /S1742058X04040044 Collins, P.H. (2000). Black feminist thought: Knowledge, consciousness, and the politics of empowerment (2nd ed.). New York: Routledge. Collins, P.H. (2004). Black sexual politics: African Americans, gender and the new racism. Florence, KY: Routledge. http://dx.doi.org/10.4324/9780203309506 Community-Based Research Centre (2010). Impact, resistance and resilience. Proceedings of the 6th British Columbia Gay Men’s Health Summit. Retrieved from http://cbrc.net/sites/cbrc.net/files/Summit_Report_2010.pdf Crenshaw, K. (1989). Demarginalizing the intersection of race and sex: A Black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics. University of Chicago Legal Forum, 1989, 139–67. Dean, J.J. (2010). Thinking intersectionality: Sexualities and the politics of multiple identities. In Y. Taylor, S. Hines, & M.E. Casey (Eds.), Theorizing intersectionality and sexuality (pp. 119–39). Basingstoke, UK: Palgrave Macmillan. http://dx.doi.org/10.1057/9780230304093_7 Dhamoon, R.K. (2011). Considerations on mainstreaming intersectionality. Political Research Quarterly, 64(1), 230–43. http://dx.doi.org/10.1177 /1065912910379227 Dignity in Schools. (2011). School pushout story bank. Retrieved from http:// www.dignityinschools.org/our-work/school-pushout-story-bank Dowsett, G.W. (2007). Researching gay men’s health: The promise of qualitative methodology. In I.H. Meyer & M.E. Northridge (Eds.), The health of sexual minorities: Public health perspectives on lesbian, gay, bisexual and transgender populations (pp. 419–41). New York: Springer. http://dx.doi.org/10.1007 /978-0-387-31334-4_16

An Intersectionality Approach to Resilience Research  471 Driskill, Q.L. (2010). Doubleweaving Two-Spirit critiques: Building alliances between Native and queer studies. GLQ: A Journal of Lesbian and Gay Studies, 16(1–2), 69–92. Duong, K. (2012). What does queer theory teach us about intersectionality? Politics & Gender, 8(03), 370–86. http://dx.doi.org/10.1017/S1743923X12000360 Ford, C.L., & Airhihenbuwa, C.O. (2010, October). The public health critical race methodology: Praxis for antiracism research. Social Science & Medicine, 71(8), 1390–8. Medline:20822840 http://dx.doi.org/10.1016/j.socscimed.2010.07.030 Gwadz, M.V., Clatts, M.C., Yi, H., Leonard, N.R., Goldsamt, L., & Lankenau, S. (2006, March). Resilience among young men who have sex with men in New York City. Sexuality Research & Social Policy, 3(1), 13–21. Medline:18079993 http://dx.doi.org/10.1525/srsp.2006.3.1.13 Hankivsky, O. (Ed.). (2011). Health inequities in Canada: Intersectional frameworks and practices. Vancouver: UBC Press. Harris, E.L. (Ed.). (1984/2005). Freedom in this village: Twenty-five years of Black gay men’s writing. New York: Carroll & Graf. (Original work published 1984). Harvey, R. (2012). Young people, sexual orientation, and resilience. In M. Ungar (Ed.), The social ecology of resilience: A handbook of theory and practice (pp. 325– 35). New York: Springer. http://dx.doi.org/10.1007/978-1-4614-0586-3_25 Herrick, A.L., Stall, R., Chmiel, J.S., Guadamuz, T.E., Penniman, T., Shoptaw, S., ... Plankey, M.W. (2013, May). It gets better: Resolution of internalized homophobia over time and associations with positive health outcomes among MSM. AIDS and Behavior, 17(4), 1423–30. Medline:23283578 http://dx.doi .org/10.1007/s10461-012-0392-x Holt, M. (2013). Enacting and imagining gay men: The looping effects of behavioural HIV surveillance in Australia. Critical Public Health, 23(4), 1–14. hooks, b. (1989). Yearnings: Race, gender and cultural politics. Boston: South End Press. Ibáñez-Carrasco, F. (2012). Making the AIDS ghostwriters visible. In E.R. Meiners & T. Quinn (Eds.), Sexualities in education: A reader (pp. 309–20). New York: Peter Lang. Kanani, N. (2011). Race and madness: Locating the experiences of racialized people with psychiatric histories in Canada and the United States. Critical Disability Discourse, 3. Retrieved from http://cdd.journals.yorku.ca/index.php /cdd/article/view/31564 Kinsman, G. (2001). Challenging Canadian and queer nationalism. In T. Goldie (Ed.), In a queer country: Gay and lesbian studies in the Canadian context (pp. 209–34). Vancouver: Arsenal Pulp Press.

472  Sarah Chown and Lorraine Halinka Malcoe Lorde, A. (1984/2007). Sister outsider. New York: Ten Speed Press. (Original work published 1984). Marcus, S. (2005). Queer theory for everyone: A review essay. Signs (Chicago, Ill.), 31(1), 191–218. http://dx.doi.org/10.1086/432743 Minton, H.L. (1997). Queer theory: Historical roots and implications for psychology. Theory & Psychology, 7(3), 337–53. http://dx.doi.org/10.1177/0959354397073003 Mullings, L. (2005). Resistance and resilience: The Sojourner Syndrome and the social context of reproduction in central Harlem. Transforming Anthropology, 13(2), 79–91. http://dx.doi.org/10.1525/tran.2005.13.2.79 Ontario AIDS Network (OAN). (2011). Living and serving 3: GIPA engagement guide and framework for Ontario ASOs. Toronto: Ontario AIDS Network. Retrieved from http://oan.red/living-serving/ Puar, J. (2010). In the wake of “It Gets Better.” The Guardian. Retrieved from https://www.theguardian.com/commentisfree/cifamerica/2010/nov/16/wake -it-gets-better-campaign Rahman, M. (2010). Queer as intersectionality: Theorizing gay Muslim identities. Sociology, 44(5), 944–61. http://dx.doi.org/10.1177/0038038510375733 Reynolds, V. (2010). Fluid and imperfect ally positioning: Some gifts of queer theory. Context, October, 13–17. Rofes, E. (1999). Why Boulder? Why gay men’s health? Why now? Paper presented at the Gay Men’s Health Summit, 29 July–1 August 1999, Boulder, Colorado. LGBTQIA Archives, San Francisco Public Library, box 18, Articles/Writings, 1979–2005. Rofes, E. (2005, Fall). Gay bodies, gay selves: Understanding the gay men’s health movement. White Crane Journal. Retrieved from https://www.gaycity.org /uploads/PDFs/Queerituality/GayBodiesGaySelves%20ERofes.pdf Roy, C. (1995). Living and serving: Persons with HIV in the Canadian AIDS movement. Ottawa: Canadian AIDS Society. Ryan, B., & Chervin, M. (2001). Valuing gay men’s lives: Reinvigorating HIV prevention in the context of our health and wellness. Canadian Strategy on HIV/ AIDS and Gay & Lesbian Health Services of Saskatoon. Savin-Williams, R.C. (2005). The new gay teenager. Cambridge, MA: Harvard University Press. http://dx.doi.org/10.4159/9780674043138 Scheim, A.I., Ware, S.M., Redman, N., Marshall, Z., & Giambrone, B. (2014). Sexual health on our own terms: The Gay, Bi, Queer Trans Men’s Working Group. In D. Irving & R. Raj (Eds.), Trans activism in Canada: A reader (pp. 247–58). Toronto: Canadian Scholars’ Press Inc. Schulz, A.J., & Mullings, L. (2005). Gender, race, class and health: Intersectional approaches. San Francisco: Jossey-Bass.

An Intersectionality Approach to Resilience Research  473 Shepherd, R. (1986/2005). On not being White. In E.L. Harris (Ed.), Freedom in this village: Twenty-five years of Black gay men’s writing (pp. 47–64). New York: Carroll & Graf. (Original work published 1986). Smith, L.T. (2012). Decolonizing methodologies: Research and Indigenous peoples (2nd ed.). London and New York: Zed Books. Smith, M. (2007). Identity and opportunity: The lesbian and gay rights movement. In M. Smith (Ed.), Group politics and social movements in Canada (pp. 181–99). Toronto: University of Toronto Press. Spade, D. (2011). Normal life: Administrative violence, critical trans politics, and the limits of the law. Brooklyn, NY: South End Press. Spade, D. (2013). Intersectional resistance and law reform. Signs (Chicago, Ill.), 38(4), 1031–55. http://dx.doi.org/10.1086/669574 Stall, R.D., Friedman, M.S., & Catania, J.A. (2008). Interacting epidemics and gay men’s health: A theory of syndemic production among urban gay men. In R.J. Wolitski, R.D. Stall, & R.O. Valdiserri (Eds.), Unequal opportunity: Health disparities affecting gay and bisexual men in the United States (pp. 251–72). New York: Oxford University Press. Sylvia Rivera Law Project (SRLP). (2013). From the bottom up: Strategies and practices for membership-based organizations. New York: Sylvia Rivera Law Project. Retrieved from www.racialequitytools.org/resourcefiles /SRLP_From_The_Bottom_Up.pdf Tilsen, J., & Nylund, D. (2010). Heteronormativity and queer youth resistance: Reversing the discourse. In L. Moon (Ed.), Counselling ideologies: Queer challenges to heteronormativity (pp. 93–104). London: Ashgate Publishing Group. Tooley, L. (2010). New directions in gay men’s health and HIV prevention in Canada. Toronto: Canadian AIDS Treatment Information Exchange. Travers, R., Wilson, M.G., Flicker, S., Guta, A., Bereket, T., McKay, C., ... Rourke, S.B. (2008, July). The Greater Involvement of People Living with AIDS principle: Theory versus practice in Ontario’s HIV/AIDS communitybased research sector. AIDS Care, 20(6), 615–24. Medline:18576163 http:// dx.doi.org/10.1080/09540120701661690 UNAIDS: Joint United Nations Program on HIV/AIDS. (2007, March). Policy brief: The greater involvement of people living with HIV/AIDS (GIPA). Retrieved from data.unaids.org/pub/BriefingNote/2007/jc1299_policy_brief _gipa.pdf Ungar, M. (2012). Introduction. In M. Ungar (Ed.), The social ecology of resilience: A handbook of theory and practice (pp. 1–9). New York: Springer-Verlag. http://dx.doi.org/10.1007/978-1-4614-0586-3_1

474  Sarah Chown and Lorraine Halinka Malcoe Wade, A. (1997). Small acts of living: Everyday resistance to violence and other forms of oppression. Contemporary Family Therapy, 19(1), 23–39. http:// dx.doi.org/10.1023/A:1026154215299 Wahlert, L. (2012, September). The painful reunion: The remedicalization of homosexuality and the rise of the queer. Journal of Bioethical Inquiry, 9(3), 261–75. Medline:23180329 http://dx.doi.org/10.1007/s11673-012-9382-y Weeks, J. (2010). Making the human gesture: History, sexuality and social justice. History Workshop Journal, 70(1), 5–20. Medline:21137589 http://dx.doi.org /10.1093/hwj/dbq019 Wexler, L.M., DiFluvio, G., & Burke, T.K. (2009, August). Resilience and marginalized youth: Making a case for personal and collective meaning-making as part of resilience research in public health. Social Science & Medicine, 69(4), 565–70. Medline:19596503 http://dx.doi.org/10.1016/j.socscimed.2009.06.022 Yekani, E.H., Michaelis, B., & Dietze, G. (2010). “Try again. Fail again. Fail better”: Queer interdependencies as corrective methodologies. In Y. Taylor, S. Hines, & M. Casey (Eds.), Theorizing intersectionality and sexuality (pp. 78–95). Basingstoke, UK: Palgrave Macmillan. http://dx.doi.org/10.1057 /9780230304093_5 Young, I.M. (2011). Responsibility for justice. New York: Oxford University Press. http://dx.doi.org/10.1093/acprof:oso/9780195392388.001.0001 Young, R.M., & Meyer, I.H. (2005, July). The trouble with “MSM” and “WSW”: Erasure of the sexual-minority person in public health discourse. American Journal of Public Health, 95(7), 1144–9. Medline:15961753 http://dx.doi.org /10.2105/AJPH.2004.046714

Contributors

Alexxa Abi-Jaoudé is the research coordinator within the Education De­ partment, Centre for Addiction and Mental Health. She was formerly the program coordinator for the now defunded Woman Abuse Response Program, BC Women’s Hospital and Health Centre. She holds a master of public health (MPH) degree from Simon Fraser University. Her current research areas include understanding the intersection of violence against women, substance use, and mental health; improving access to mental health support and resources using eHealth interventions; and exploring ways to authentically engage clients and families in developing and delivering mental health education initiatives. Alexxa has worked on numerous participatory action research projects focused on improving supports and services for vulnerable women and youth. She co-led the British Columbia research project “Building Bridges: Linking Woman Abuse, Substance Use, and Mental Ill Health.” Mike Arnouse is a Secwepemc Elder at Thompson Rivers University, Kamloops, British Columbia. Katie Aubrecht is a postdoctoral fellow and research coordinator at the Nova Scotia Centre on Aging, Mount Saint Vincent University, Halifax. She uses intersectional, post-colonial, and interpretive sociological theories and qualitative research methods to examine the social construction of “mental life.” Her research and teaching adopts a disability studies perspective, which privileges the lived experience of disability. Katie has published in Social Identities, Review of Disability Studies, Studies in Social Justice, and Seniors Housing & Care, and in 2013 she edited a special issue

476 Contributors

of Health, Culture, and Society, “Translating Happiness: Medicine, Culture, and Social Progress.” Susan Boyd is a distinguished professor in the Faculty of Human and Social Development, University of Victoria, British Columbia. She was a member of the Criminalization, Mental Health, and Addictions team in the Centre for the Study of Gender, Social Inequities, and Mental Health. She is the author of Hooked: Drug Films in Britain, Canada, and the US; From Witches to Crack Moms: Women, Drug Law, and Policy; and Mothers and Illicit Drugs: Transcending the Myths; a co-author of Killer Weed: Marijuana Grow Ops, Media, and Justice; Raise Shit! Social Action Saving Lives; and More Harm Than Good: Drug Policy in Canada; and a co-editor of With Child: Substance Use during Pregnancy: A Woman-Centred Approach. Darrell Burnham is the chief executive officer of Coast Mental Health, a multi-service community mental health agency in the Greater Vancouver area. With its interest in enabling the recovery of people with mental illness, Coast Mental Health has participated in several important research studies focusing on a range of important issues related to community living. Wendy Chan is professor of sociology at Simon Fraser University. She was a co-leader of the Criminalization, Mental Health, and Addictions team in the Centre for the Study of Gender, Social Inequities, and Mental Health. She has published in the areas of gender and mental health, race, racialization, and the criminal justice system, and on welfare fraud and poverty in Canada. Her publications include monographs and co-edited books: Racialization, Crime, and Criminal Justice in Canada; Criminalizing Race, Criminalizing Poverty; Women, Madness, and the Law: A Feminist Reader; Crimes of Colour; Women, Murder, and Justice. Sabina Chatterjee is an activist, artist, scholar, and community facilitator. She worked with street-involved youth for twenty years and was the director of antidote: Multiracial and Indigenous Girls and Women’s Network. Sabina has a master’s degree in dispute resolution from the University of Victoria and is currently a doctoral student in gender, feminist, and women’s studies at York University. Decolonization and accountability by non-Indigenous racialized people, critical race theory, collaborative inquiry, social justice, and solidarity are deeply woven within her activist work and scholarship. Sabina is deeply indebted to the fierce determination of trouble­makers and dreamers whose tireless work to create change has

Contributors 477

made it possible for her to write about matters that are close to her heart. Whether working with fibres or words, she is grateful to be surrounded by beauty, possibility, and inspiration every day. Sarah Chown started working in sexual health during her undergraduate studies in public affairs and policy management at Carleton University, Ottawa. Since then, she has worked as a researcher, an educator, and a health promoter in Kigali (Rwanda), Iqaluit (Nunavut), Guelph (Ontario), and Vancouver (British Columbia). Sarah works as executive director at YouthCO HIV & Hep C Society, a youth-driven organization providing peer support and education around HIV and hepatitis C. She holds a master of public health degree in social inequities and health concentration at Simon Fraser University. Dorothy E. Chunn is emerita professor of sociology at Simon Fraser Uni­ versity. She was a co-leader of the Criminalization, Mental Health, and Addictions team in the Centre for the Study of Gender, Social Inequities, and Mental Health. She has published both historical and contemporary analyses in the areas of crime, madness, and social welfare; feminism, law, and social change; the regulation of lone motherhood; and media representations of social issues. Dorothy’s publications include several co-edited collections: The Legal Tender of Gender: Welfare, Law, and the Regulation of Women’s Poverty; Reaction and Resistance: Feminism, Law, and Social Change; and Women, Madness, and the Law: A Feminist Reader. Natalie Clark (Métis ancestry, and mother of Secwepemc children) is on the faculty at the School of Social Work, Thompson Rivers University in Kamloops, British Columbia, on unceded Secwepemc territory. She has focused on Indigenous and decolonizing research in partnership with community. Natalie is currently co-principal investigator of a Social Sciences and Humanities Research Council (SSHRC)–funded grant, “How Do Mothers and Caseworkers Develop ‘Care Capital’?: Testing an Asset Building Framework in Child Welfare Practice,” and of a Canadian Institute of Health (CIHR)–funded research project with the  Native Youth Sexual Health Network,  National Indigenous Youth Council on HIV/AIDS, and the Canadian Aboriginal AIDS Network entitled “Beyond ‘At Risk’: Looking Seven Generations Ahead.” She teaches front-line undergraduate and graduate courses on trauma practice. Her practice, teaching, and research over the last twenty years have focused on trauma with children, youth, and their families and communities, and on the coping responses to

478 Contributors

trauma and violence including experiences with issues of sexual exploitation; eating disorders; and addictions, youth justice, and health. Jill Cory has over thirty years of experience in the anti-violence field, working in front-line policy, training, evaluation, and research. Until 2015 she was program director of the Provincial Woman Abuse Response Program at BC Women’s Hospital and Health Centre, where she was responsible for developing policy, conducting research, establishing province-wide networks, and providing curricula and training to support health regions and communities in implementing strategies and programs to address the health impacts of violence against women and reduce women’s negative service experiences. Along with her team, Jill conducted a five-year, province-wide participatory research project entitled “Building Bridges: Linking Woman Abuse, Substance Use, and Mental Ill Health.” She is the co-author of several publications, including SHE Framework: Safety and Health Enhancement for Women Experiencing Abuse, A Toolkit for Health Care Providers and Planners; Best Practice Approaches: Child Protection and Violence against Women, A Curriculum for Child Protection Workers; and When Love Hurts: A Woman’s Guide to Understanding Abuse in Relationships. Julie Drolet is an associate professor in the Faculty of Social Work, Central and Northern Alberta Region, University of Calgary. She is principal investigator of the “Alberta Resilient Communities Project: Engaging Children and Youth in Community Resilience Post-Flood in Southern Alberta,” funded by Alberta Innovates Health Solutions (2015–18), and of “Rebuilding Lives Post-Disaster: Innovative Community Practices for Sustainable Development,” funded by a SSHRC partnership development grant (2012–16). She is co-investigator in Pathways to Prosperity, a research alliance dedicated to fostering welcoming communities that promote economic, social, and civic integration of migrants and minorities in Canada. Julie was previously a domain leader in the Settlement, Integration, and Welcoming Communities Domain with the Metropolis BC network. She has published extensively on international social work and social development with a focus on gender and development, climate change and disasters, international social protection initiatives, anti-oppressive social work field education, qualitative research, and international migration and Canadian immigration. T. Garner holds a doctorate in gender, sexuality, and women’s studies from Simon Fraser University. Their thesis, “Stitching Up the Natural:

Contributors 479

‘Manboobs,’ Pregnancy, and the Transgender Body,” focuses on the construction of the (un)natural body through a comparison of gynecomastia surgery, transgender chest surgery, and pregnancy. Garner is the community organizer for the BC Poverty Reduction Coalition, a project co-founded by the Canadian Centre for Policy Alternatives, and teaches within the Gender, Sexuality, and Women’s Studies department at Simon Fraser University, most recently teaching a course on disability studies and its intersections. Louise Godard is a community-based researcher. For the past eighteen years she has worked in various capacities in the area of violence against women, including front-line crisis work, community-based research, policy development, and international work, developing health policy for young girls trafficked and exploited in the sex trade. She holds a master of social work degree from Wilfrid Laurier University (Ontario) and was previously the project coordinator for the Woman Abuse Response Program at BC Women’s Hospital and Health Centre. Louise’s work has focused on how women’s and girls’ experiences of violence, access to services, and general health and well-being intersect with gender and other social determinants of health. Most recently, her focus has been on uncovering the ways in which services and systems can be restructured, and how innovative policy and practice solutions can be employed to foster women’s and girls’ health and safety in a meaningful way. Dawn Hemingway is associate professor and chair of the School of Social Work at the University of Northern British Columbia, with adjunct appointments in Community Health Science and Gender Studies. She was on the Recovery and Housing team in the Centre for the Study of Gender, Social Inequities, and Mental Health. Her research interests include mental health and aging; caregiving; and northern and rural health and quality of life. Dawn is co-director of Women North Network/Northern FIRE: The Centre for Women’s Health Research at the University of Northern British Columbia and serves on the board of a local women’s shelter, sexual assault centre, committee addressing homelessness, and child and youth mental health agency. Mohamed Ibrahim is on the faculty at Kwantlen Polytechnic University, Surrey, British Columbia, and a doctoral candidate in the Faculty of Health Sciences at Simon Fraser University. He has worked as a mental health clinician and educator in the United States, Canada, and East Africa. His

480 Contributors

efforts in East Africa have included teaching in the School of Nursing in Mogadishu, Somalia, and work with the Ministry of Health, Kenya, and Médecins Sans Frontières at Dadaab Refugee Camp, the largest refugee camp in the world. Mohamed is the founder of a community-based organization in northern Kenya that provides treatment and support for mental health concerns, promotes awareness, and reduces stigma. His areas of teaching and research include transnational mental health, mental health reforms, community mental health, addiction, and holistic approaches to psychosocial distress. Viviane Josewski is a doctoral candidate in the Faculty of Health Sciences at Simon Fraser University. She is a graduate of the doctoral traineeship program at the Centre for the Study of Gender, Social Inequities, and Mental Health. Her areas of interest include gender, mental health, and social inequities, with emphasis on ethical practice, policy, and research within the post-colonial context of health care reform. Viviane’s doctoral research explores how current funding environments and contractual arrangements with the Indigenous non-profit sector promote individual, family, and community mental wellness within the urban, off-reserve context of British Columbia. Georgia Jules is a youth researcher, Secwepemc Nation. At the time of the project described in chapter 6 of Critical Inquiries for Social Justice in Mental Health she was a student at Thompson Rivers University, Kamloops, British Columbia. Sean Kidd is chief of psychology in the Centre for Addiction and Mental Health and is associate professor with the University of Toronto, Depart­ ment of Psychiatry. He was a co-leader of the Recovery and Housing team in the Centre for the Study of Gender, Social Inequities, and Mental Health. Sean’s interests include examining mechanisms of resilience among marginalized persons and the effectiveness of psychiatric rehabilitation interventions. His past work has focused on Assertive Community Treat­ ment, policy and service development for homeless youth, and the delivery of recovery-oriented services. Terry Krupa is a professor in the School of Rehabilitation Therapy at Queen’s University, Kingston, Ontario. She was a co-leader of the Recovery and Housing team in the Centre for the Study of Gender, Social Inequities, and Mental Health. Terry’s work focuses on issues of social and occupational

Contributors 481

participation experienced by people with lived experience of mental illness. She has a particular interest in the design of mental health services and supports that authentically enable experiences of community participation characterized by inclusion, equity, and access to the full range of human capabilities. Talicia Main is a youth researcher, Urban First Nations. At the time of the project described in chapter 6 of Critical Inquiries for Social Justice in Mental Health she was a high school student. Lorraine Halinka Malcoe is associate professor of social epidemiology in the Joseph J. Zilber School of Public Health, University of Wisconsin– Milwaukee, and adjunct professor in the Faculty of Health Sciences, Simon Fraser University. She was a co-leader of the Violence, Mental Health, and Sub­stance Use team in the Centre for the Study of Gender, Social Inequities, and Mental Health. Her research has addressed child health, mental health, and violence against women who experience marginalization from multiple oppressive systems. Lorraine seeks to develop participatory and transdisciplinary methodological approaches for studying gender, colonial, race, and class inequities in health. Currently she is applying critical race, feminist, decolonial, and intersectional theories to examine health inequities research, with attention to the ways in which the scientific knowledge production process and resulting scholarship exacerbate existing structured inequities or promote health equity. Indrani Margolin is an associate professor in the School of Social Work at the University of Northern British Columbia. She was on the Recovery and Housing team in the Centre for the Study of Gender, Social Inequities, and Mental Health. Indrani organized and helped establish a Vancouverbased bachelor of social work program. Her research interests include girls’ and women’s wellness; arts-based inquiry; the role of spirituality in practice for social workers and clients; and Mahavakyam Meditation: The Ancient Secrets of Success system. Indrani won an award for a dance-based research program created for girls in an urban school setting and is a lead researcher with Women North Network / Northern FIRE: The Centre for Women’s Health Research at the University of Northern British Columbia. China Mills is a lecturer at the University of Sheffield, United Kingdom. She carries out research that explores the ways in which the “psy-” disciplines and psychotropic drugs function in local and global contexts of inequality,

482 Contributors

poverty, and neocolonialism and increasingly under the politics of austerity. Her book Decolonizing Global Mental Health: The Psychiatrization of the Majority World was published by Routledge in 2014. Since then she has published numerous articles and book chapters, with a particular focus on global psychiatrization and pharmaceuticalization. Marina Morrow is professor and chair of the School of Health Policy and Management at York University. She was the director of the Centre for the Study of Gender, Social Inequities, and Mental Health. Marina’s doctorate is in community psychology from the Ontario Institute for Studies in Education at the University of Toronto. Her research interests are in critical health policy with foci on the following four themes: mental health reform, service provision, and access to health services; mental health and social inequity; mental health and citizen engagement; and neoliberal reforms, gender, and health. Dave Murray and NAOMI Patients Association. Dave is the founder of SALOME/NAOMI Association of Patients, formerly the NAOMI Patients Association, and facilitates its weekly meetings. He is also a volunteer at Vancouver Area Network of Drug Users and a board member of the Downtown Eastside Neighbourhood Council, BC/Yukon Association of Drug War Survivors, Pivot Legal Society, and the Pacific Hepatitis C Network, and acting secretary of the Canadian Association of People Who Use Drugs. Michelle Patterson is a scientist and adjunct professor in the Faculty of Health Sciences at Simon Fraser University. She was on the Recovery and Housing team in the Centre for the Study of Gender, Social Inequities, and Mental Health. Her research focuses on the intersection of housing, mental illness, and addiction. She is interested in system-level integration and change within marginalized communities, and the ways in which systemic factors influence individual and collective perceptions of belonging and community. Michelle also has a part-time private clinical psychology practice in Vancouver. Janette Perz is professor and director of the Centre for Health Research at Western Sydney University, Australia. She was a co-leader of the Re­ productive and Sexual Mental Health team in the Centre for the Study of Gender, Social Inequities, and Mental Health. She conducts research in the field of reproductive and sexual health with a particular focus on gendered

Contributors 483

experiences, subjectivity, and identity. Janette has undertaken a significant research program in sexual and reproductive health, including the experience of premenstrual syndrome in heterosexual and lesbian relationships; the development and evaluation of a couple-based psychological intervention for premenstrual syndrome; sexual well-being and reproductive needs in culturally and linguistically diverse populations; sexual and psychological well-being during menopause and midlife; and sexuality and fertility in the context of cancer. Ruby Peterson (Pankwa’las) is from ‘Namgis First Nation in Alert Bay, British Columbia, where she grew up with her mother, Pauline Isaac, her grandparents, Ben and Dorothy (neé Nowell) Isaac, and her large extended family. Her work and education have centred largely around the history and impacts of Indigenous people of Canada and restoring Indigenous Knowledge healing and wellness practices. She has a private counselling and mentorship practice in the Okanagan where she lives with her husband and four children, and she teaches part time at the University of British Columbia, Okanagan Campus. Victoria Smye is associate professor and director of nursing, Faculty of Health Sciences, at the University of Ontario Institute of Technology. Her program of research focuses on addressing inequity in mental health and addictions policy and services, located at the intersections of violence, gender, poverty, and Indigenous health. For example, she is leading a SSHRC– CHIR-funded study entitled “Indigenous Men’s Narratives of Health: Reclaiming our Lives,” conducted in collaboration with other researchers, community agencies, and community members. Other recently concluded CIHR-funded research include “Aboriginal Women’s Experiences of Leaving and/or Staying with an Abusive Partner,” “Improving Primary Health Care: Lessons Learned from Two Aboriginal Health Centers,” and “The Methadone Mess (an International Project).” She is a co-investigator on several studies, including CIHR-funded health equity research in primary health care and a Masculinities and Men’s Depression and Suicide Network project, funded by the Canadian Men’s Health Network “Movember.” Katherine Teghtsoonian is a professor in the Faculty of Human and Social Development at the University of Victoria, British Columbia. She has a long-standing interest in feminist and other critical approaches to public policy and policy analysis, which is reflected in her previous research on childcare policy debates, women’s policy agencies, and gender

484 Contributors

mainstreaming initiatives within government. Her recent scholarship has involved a critical analysis of initiatives intended to address the problem of depression in workplaces and as a public health issue. Like her earlier work, this research is centrally concerned with an analysis of neoliberalizing policies, governing practices, and their effects. She has published in both discipline-based and interdisciplinary journals, including the Canadian Journal of Political Science, Critical Policy Studies, Signs: Journal of Women in Culture and Society, and Social Science & Medicine, as well as the volume Contesting Illness: Processes and Practices, which she co-edited with Pamela Moss. Tanya Titchkosky is a professor in social justice education at the Ontario Institute for Studies in Education, University of Toronto. Her teaching and research areas are tied to interpretive approaches to disability studies informed by Black, post-colonial, and queer theory that work in relationship to phenomenological traditions. Tanya has authored three books – The Question of Access; Reading and Writing Disability Differently; and Disability, Self, and Society – and co-edited, with Rod Michalko, Rethinking Normalcy: A Disability Studies Reader. Her most recent SSHRC-funded research project is titled “Reimaging the Appearance and Disappearance of Disability in the Academy.” Jemma Tosh is a researcher in the Faculty of Health Sciences at Simon Fraser University. Her research incorporates critical psychology, feminist, queer, trans, and intersex perspectives with a particular focus on gender, sexual violence, and related psychiatric diagnoses. Jemma is the author of Perverse Psychology: The Pathologization of Sexual Violence and Transgenderism and Psychology and Gender Dysphoria: Feminist and Transgender Perspectives. She has written extensively about her opposition to psychiatric treatment that discourages gender creativity in children. Tara Tribute (of Mohawk ancestry) has a master of education degree and is a First Nations counsellor in School District 73, Kamloops, British Columbia. At the time of the project described in chapter 6 of Critical Inquiries for Social Justice in Mental Health she was a youth counsellor with the Kamloops Aboriginal Friendship Society. Jane M. Ussher is professor of women’s health psychology at Western Sydney University, Australia. She was a co-leader of the Reproductive and Sexual Mental Health team in the Centre for the Study of Gender, Social

Contributors 485

Inequities, and Mental Health. She has published widely on the construction­ and lived experience of health, in particular women’s mental health, the reproductive body, and sexuality. Jane is editor of the Routledge Women and Psychology book series and is author of a number of books, including Women’s Madness: Misogyny or Mental Illness?; Managing the Monstrous Feminine: Regulating the Reproductive Body; and The Madness of Women: Myth and Experience. Her current research focuses on sexual and reproductive health, with particular emphasis on premenstrual experiences, sexuality and fertility in the context of cancer, and the sexual health of culturally and linguistically diverse women. Patrick Walton (of Métis ancestry) is a faculty member in the School of Education at Thompson Rivers University, Kamloops, British Columbia. His research focuses on the development of curricula to teach Aboriginal children pre-reading skills and reading strategies that include the use of songs and movement. Patrick is also interested in Aboriginal university retention, and his research in this area has resulted in a report to Thompson Rivers University; it will be used to assist in developing strategies that are being designed by the university. Denise Zabkiewicz is a social epidemiologist and associate professor in the Faculty of Health Sciences at Simon Fraser University. Her research focuses on the social and economic factors related to mental health among women living in poverty. Recently her work has examined issues of family fragmentation among homeless women living with mental illness, and how the role of mothering influences trajectories of mental illness and housing instability.

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Index

ableism, 11, 46, 323, 327, 329n7 abnormal/normal, 262–3, 338, 344 Aboriginal: deaths in police custody, 4; two-spirit, 259; women’s experiences, 416; youth, 168–9, 178; abuse, services and systems for women with experience of, 413–42 activism, 142, 144, 147, 153, 158, 454, 458; overview, 7, 10, 12, 16, 19, 20, 22, 230. See also gay men; Indigenous (traditional) knowledge; intersectional activism, analysis, and framework; intersex and intersexuality; LGBTIQ2S; lived experience; Mad activism, politics, and liberation; neoliberalism; responsibilization; SALOME/ NAOMI Association of Patients (SNAP); transgender; Vancouver Area Network of Drug Users (VANDU) Africa, mental health, 113–37; healing systems, 126; language and culture, 122; mental health research, 127–8; services in, 119–24; traditional knowledge, 121

African Health Care System, South Africa, 128 African Mental Health Foundation, Nairobi, Kenya, 128 African Mind in Health and Disease, The (WHO, Carothers), 118 African Union, 114 Age 13 (1955), 348, 351 AIDS Action Now! (AAN!), 446 AIDS Coalition to Unleash Power (ACT UP), 446 Alberta’s Sexual Sterilization Act, 449 Alfred, Taiaiake, 169–70 Algiers School of Psychiatry, 116 allies, 147, 154, 161n7, 256 American Psychiatric Association (APA), 255–6, 266–7 American Psychological Association, 267 Angry Boy (1951), 351 Antidepressant Skills at Work (Bilsker, Gilber, and Samra), 232 anti-psychiatry movement: about, 33, 50n2; compared to feminist academic critiques of psychiatry, 35–6; compared to mental patients’

488 Index liberation movement, 34; “right to be different,” 336. See also biomedicine; mental patients’ liberation movement arts-based methods: collage used in, 401–2; for creating research spaces, 386–412; film-making used in, 392–3; language arts used in, 393; movement (gesture and improvisational) used in, 402; photography used in, 390–2; visual arts used in, 393 arts-based research: definition, 387; lived experiences, 387; review, 389–95 Assyrian refugees: Australian study, 212–16 Attitudes and Health (1949), 353 Australia: study of Assyrian and Karen refugees, 212–16; study of PMS sufferers, Anglo-Australian, 200–12 Ayana or Mingis (folkloric healing system), 124 Bannerji, H., 457 Barrie Native Friendship Centre, 162n9 BC-Yukon Association of Drug War Survivors, 371 Beam, Joseph, 444 Beauvoir, Simone de, 305 Becker, Howard, 357n7 Bell Canada, 231, 320 Bhabha, Homi, 79 Bilge, S., 12 Bill of Client Rights, 76 Billy, Irene, 179–80 biological psychiatry. See biomedicine

biomedical psychiatry. See biomedicine biomedicine, 49, 75, 90, 416, 417; biomedicalism and psychiatry, 37–42; challenges of, 433; effectiveness of, 126; ethics and inequities, 63–4, 76; as form of oppression, 115, 117, 255, 416, 426; as harmful, 120, 123, 124; legitimacy questioned, 127–8, 131; and neoliberalism, 42–6; normalized, 39, 50n7; overview, 5, 6, 7, 13, 14, 33; rationale for, 125; versus traditional knowledge, 127–8; used to justify colonialism, 114. See also anti-psychiatry movement; mental patients’ liberation movement; ­premenstrual changes; psychiatry biopower, 301 biopsychiatry, 36, 46, 78, 90, 92, 97 Blackbridge, Persimmon, 33–4 Black feminists, 10, 63, 170, 337–8, 386, 447. See also feminism and feminist movement; people of colour; racialization; racism Bland, R.C., 315, 327–8n1 borderline personality disorders, 417, 425 Bottom Line Conference (2013), 233 Boy with a Knife (1956), 348, 351 Braedley, S., 43 bricolage, 79 British Columbia, 34, 44–5, 48, 50n3, 166–7, 172–3, 230, 244–6, 380–1, 395–6 British Psychological Society, division of clinical psychology (DCP), 37, 267 Bröckling, U., 234, 236 Browne, A.J., 76, 77

Index 489 Bruce, D., 463, 464, 466 Burstow, B., 11–12, 50n4 Business and Economic Plan (Global Roundtable), 242 Canadian Association of People Who Use Drugs (CAPUD), 371 Canadian Association of University Teachers, 245 Canadian Charter of Rights and Freedoms, 66 Canadian HIV/AIDS Legal Network, 369–70 Canadian Institutes of Health Research (CIHR), 239 Canadian Mental Health Association (CMHA), 232, 235 Canadian Standards Association, 244 Cannon, M., 180 capabilities-informed approaches to social justice, 67 capitalism: analysis of, 241; intersected with colonialism and gender, 170; and neoliberalism, 8; and political economy, 241; as system of oppression, 10, 11, 419, 429, 454 Caplan, P., 262, 269 care, ethics of, 67, 69 Cariboo Tribal Council, 174 Carless, D., 393–4 Carothers, J.C., 118, 126 Cartwright, S., 117 Centre for Addiction and Mental Health (CAMH), 76, 267, 269, 273n9 Centre for the Study of Gender, Social Inequities, and Mental Health, ix, x, 415 centre in the margins, 445, 447, 457–60, 465–8

Chamberlin, J., 34–6 Chance to Play, A (1950), 352, 353 Chantler, K., 47 Chase, C., 269–70 Chazan, M., 152 Chesler, Phyllis, 36 Chrisler, J., 199, 216, 217 cisgenderism, 255, 257, 260–1, 266, 307, 307n1 cissexism, 454 class and classism, 77, 90, 170, 230, 292, 334, 394, 451; analysis of, 241; assumptions based on, 198, 257–8, 263, 335, 339–43, 449; differences ignored, discriminatory, 37, 68, 72; different health outcomes, 62; inequities in, 218, 386, 430, 467; ­intersected with race and gender, 63, 296, 337, 402–3; legislation based on, 366; overview, 3, 7, 10, 13, 16, 18; power mediated through, 47; structural differences, 67. See also madness in the media Clean Living Recovery, 327n1 cognitive behavioural therapy (CBT), 232, 237, 265 cognitive enslavement, 87 cognitive injustice, 87 Collins, Patricia Hill, 10, 337–8, 417, 449, 455 colonialism, 87–109; versus coloniality, 88; and decolonization, 113–37, 138–64; definition, 63, 80n2; as form of oppression, 46–7, 80n2, 88, 122, 419, 429, 454; and heterosexism, 463; as metaphor, 93–4; ongoing, 40–1, 167, 170; overview, 4, 9, 11, 14, 15, 21; resistance to, 174; as structural factor, 36, 169,

490 Index 414; and structural racism, 177–82. See also Indigenous youth (urban); neocolonialism; settler colonialism colonization, 87–109, 152, 169–70. See also decolonization; psychiatrization; settler colonialism colonization of the mind, 87 community, virtual, 287 community-based (participatory) research, 171, 173, 371, 382, 394, 457, 459. See also participatory action research compliance therapy, 265 Conrad, P., 318, 426 constructivism and constructivist epistemology, 304–5, 401–2. See also social constructionism Convention on the Rights of Persons with Disabilities (CRPD), United Nations, 120, 129–30, 132n1 Crenshaw, Kimberlé, 10, 170, 337–8, 447, 451 criminalization: of drugs, 368–9; of Indigenous people, 4, 113; of psychiatrized people, 114, 118. See also drug policy in Canada critical disability studies, 48, 314, 355 critical realist epistemology and approach: discussion of, 37, 78, 200; overview, 16, 21. See also materialdiscursive-intrapsychic (MDI) approach; relational approaches to social justice critical theory, 8–9, 12, 15, 20, 76–8 cultural appropriation, 273n7 cultural competency, 168, 186n2 cultural safety and culturally safe practices, 47, 169, 172, 175, 178–80

Danforth, Jessica, 183 dargahs, 97 decolonization: human rights approaches to, 113–37; social justice dialogues, 138–64 decolonizing research and practice. See decolonization; Indigenous youth (urban) Deegan, Patricia, 388 de-institutionalization, 35, 38, 44 Denzin, N.K., 76–7, 79 depression, 219, 237, 249n1 depression in the workplace, 229–54; business response, 231; cost of, 249n2; feminist analysis, 241–7; gender, 242–3; governing practices, 236–40; government responses, 229–30, 232; in hierarchy of research, 239, 250n6; resilience training, 236; sexual orientation, 243; for women in academia, 246 Derrida, J., 262 Dhamoon, R.K., 448–9 Dhareshwar, V., 99 Diagnostic and Statistical Manual of Mental Disorders. See DSM (APA) disability: benefits, 44–5, 230–1; case management of, 236, 238–9; concepts of, 72–3; and human rights, 129–30, 132; and mental illness, 125; psychosocial, 113, 129–32, 132n1; and unemployment, 68, 73, 78 Disability-Adjusted Life Year (DALY), 124 Disability Benefits Program Act (British Columbia), 44–5 disability case management, 238–9

Index 491 discourse: definition, 418; experts versus lived experience, 421–4; leaving, 427–31; pathologizing, 424–7 discourse analysis, 201, 290–1, 418–19 discrimination, 269; effects of, 243–4; experience of, 114; within mental health services, 405; against people with psychosocial disabilities, 114; and sanism, 40, 47; structural, 36, 260, 374, 414, 462; against trans people, 270, 288; against victims of abuse, 427; working against, 168, 337. See also stigma distress: and mental health, xi–xii, 21, 34, 37–9, 50n4, 87, 89–98, 102–3, 125; premenstrual, 197–221; transsexualism versus gynecomastia, 289–90 documentaries: list of, 356–7. See also madness in the media domination: and colonialism, 88–9, 182, 186n1; interlocking systems of, 11, 337, 429, 448–9, 454–6; matrix of, 337, 356; and privilege, 452, 458, 460; and social justice, 63 Downie, J., 69 Downtown Eastside (DTES, Vancouver, BC), 365–85 Driskell, Qwo-Li, 182 Drucker, Ernest, 370 drug policy in Canada, 366–70, 378, 382 DSM (APA): about, 334, 357n2; criticism of, 8, 37–8, 258, 263, 267, 355; shift of terminology, 255–6, 263–4, 285, 307–8n2, 443 Dua, E., 152 Duong, K., 451 Duran, B., 159 Duran, Eduardo, 141, 159

egalitarian theories of social justice, 66–7 electroconvulsive therapy (ECT), 4, 11–12, 116–18, 120–1, 344, 355 Emerson, Larry, 144 Emke, I., 266 employment, 45, 340; barriers to, 68, 73–4; as indicator of resilience, 462; at L’Arche houses, 346; overview, 3; return to, 42. See also depression in the workplace; unemployment Employment and Assistance for Persons with Disabilities Act (British Columbia), 44–5 Empty Life, The (1961), 343 epistemicide, 98, 102–3 Ethical Engagement of People Who Inject Drugs in HIV Prevention Trials (UNAIDS), 370 ethical issues: drug policies, 365–85; ethics of care, 69; ethics of consent, 100; feminist ethics, 69; and gender identity, 260; guidelines, 172; Indigenous ethics, 172; theories, 60–74 ethical theory and mental health inequities: critical relational understanding, 69–74; redistributive paradigm, 64–8 eugenics, 7, 18, 116, 334, 355 experts: versus non-experts, 313–32; participants becoming, of their own lives/experiences, 390, 394, 416; versus people with lived experience, 421–4; versus traditional knowledge, 158; use of certain tools, 240 Faces of Depression (1958), 344, 346 Fanon, Frantz, 90–5, 101, 103 Feder, E., 263

492 Index female-to-male transition, 293–8 Feminine Mystique (Friedan), 257–8 femininity, idealized, 209, 347 feminism and feminist movement or perspective: and concept of power, 250, 420; critique of positivism, 354; critique of psychology and psychiatry, 33–5, 255, 266; overview, 5, 10, 11, 12, 13, 16–17, 19; and psychiatric survivors, 36; relationship to mental patients’ liberation movement and anti-psychiatry movement, 33, 50n2; support for PTSD, 425; and transgender community, 267–8. See also Black feminists; intersectionality; Mad activism, politics, and liberation; post-colonial feminism; postcolonial frameworks feminist analysis, 20, 33, 198, 201, 208–9, 230, 241–8 feminist social justice framework, 40–1, 67, 69, 402, 432, 450 feminist theories, 69–70, 158, 216, 250n5, 417–9; overview, 20, 21, 22. See also intersectionality Fernando, S., 98 film-making. See arts-based methods Finney, Sandrina de, 171 First Peoples of Canada, 141. See also Indigenous themes food insecurity, 271, 379, 435 Foucauldian discourse analysis, 201, 290–1 Foucault, M., 71, 233, 250n5, 250n6, 263, 290, 298 Fourth World, The (Manuel), 179 Fraser, N., 70, 72, 74 Freire, P., 141 Frieden, B., 257–8

Galgalpotla (hold one another up), 150, 159 Gandhi, Mahatma, 100 Gay/Bi/Queer Trans Men’s Working Group, 455 gay men: health activism and research, 446–7, 452–60; term usage, 443, 468n1. See also homosexuality; LGBTIQ2S; queer and queer theory gender: assigned, 264; assumptions of, 256, 272n3, 399; as cultural construct, 182, 257–60, 273n7, 286, 288, 307–8n2; in-patient care, 405; roles, expectations of, 212, 258, 406 gender creativity. See transgender gender dysphoria (formerly gender identity disorder), 255–61, 272n1–2, 285 gendering, discourse, and power. See depression in the workplace; nonconformity (gender) or psychiatric non-compliance; premenstrual changes gender non-compliance, 255–82 gender non-conformity. See transgender Gender Shock (Burke), 260 Ghana, 115, 121 GID Reform Advocates, 267 Gilfus, M.E., 426 Gilhooly, Sheila, 33–4 GIPA/MIPA, 447, 457, 459 Gleason, Mona, 335, 338, 339–40, 343 Global Burden of Disease (WHO), 124, 128 Global Business and Economic Roundtable on Addiction and Mental Health (Global Roundtable), 231, 242–4, 250n4

Index 493 global psychiatrization. See psychiatrization, global Goffman, E., 315–16, 323, 327 Gordon, D.R., 7 Gordon, H.L., 117 Gorman, R., 49 governing practices and policies, 236–40, 249n3. See also depression in the workplace governmentality, 43, 230, 233–5, 240–2, 247, 250n5 greater and meaningful involvement of people with HIV/AIDS (GIPA/ MIPA), 447, 457, 459 Great-West Life Centre for Mental Health in the Workplace, 231 Guarding Minds @ Work, 237 Gwadz, M.V., 464, 465, 466 gynecomastia, 285, 289, 299–305 Hall, Stuart, 354 Hancock, A.M., 78 Hankivsky, O., 67, 69 harm reduction, 64–5, 369, 373 Hassan, Mohamed Abdullah, 119 HAT, 365–85 health care systems, 39, 44, 47–8, 70, 75–6, 122–8, 246 Herman, J., 425 Hermaphrodites with Attitude, 270 heroin-assisted treatment (HAT), 365–85 Herrick, A.L., 462, 465, 466–7 heterosexism: assumption of, 264; and colonialism, 463; as form of oppression, 419, 448, 455, 466; as the norm, 263, 449; overview, 11, 16, 33, 444; and racism, 454, 464; reinforced by traditional custom, 47; in the workplace, 243–4.

See also gynecomastia; homophobia; madness in the media heterosexual: self-identified in study, 200–12, 217, 220 “hierarchy of credibility,” 346, 358n7 Higginbotham, N., 98 Hinduism, 140, 161n1 Hinkson, Chief Justice, 381 HIV/AIDS, 119, 369–70, 443–74. See also people living with HIV/AIDS (PHAs) homophobia and internalized homophobia, 259, 444, 453, 461, 464–6 homosexuality, 335–6, 341, 348, 351. See also gay men; heterosexism; lesbians and lesbianism; LGBTIQ2S; two-spirit hooks, b., 457 “house” of knowledge, 144, 161n4 housing, 42, 44, 45, 62, 75, 247, 288, 346, 421–2; housing first, 42; lack of social housing, DTES, 368, 371; overview, 3, 20; recommendations, 379; stability of, marker of resilience, 465–6 housing insecurity, 414–16, 419, 428, 429, 431, 432, 435, 466 human immunodeficiency virus (HIV). See HIV/AIDS human rights issues: addressing violence against women, 435; approaches to decolonization, 113–37; and colonization in Canada, 152; drug policies and services based on, 382, 446; equality for gay men, 446; ethical guidelines, 172; inequities in health as, 65; overview, 15, 113, 114 Human Rights Watch, 115 Hunt, Sarah, 172

494 Index Ibáñez-Carrasco, F., 459, 467 ICL (Indigenous-centred learning), 142 identity politics, 70 IH (internalized homophobia). See homophobia immigration and immigrant experiences, 11, 152, 198, 245, 407, 419. See also under Australia impairment versus disability, 72 imperialism: overview, 33; psychiatry as, 33, 96, 98 India, 95–8, 259 Indian Act (Canada), 181 indigeneity, 170, 180, 183, 462 Indigenous-centred learning (ICL), 142 Indigenous themes: colonization, 167; culture by specific nation, 177; decolonization, 167; documentaries of early nineteenth-century Canada, 339; feminists, 63; healing and health, 97, 102, 167, 174, 177; identity, 174–6, 179; importance of languages, 176, 179, 181; intersectionality, 46–7, 169; lived experiences of researchers, 169; protective factors for youth, 168, 181; scholar recognition, 70; self-determination, 70; spirituality, 176. See also colonialism; decolonization; residential schools; settler colonies and communities; two-spirit Indigenous (traditional) knowledge, 96, 141–4, 149–51, 155, 157–8, 164n4, 172, 185 Indigenous youth (urban), re-­ imagining mental health, 165–93 individualism: as dominant ideology, 417; overview, 8, 10; policy changes in BC toward, 45; reinforced by

neoliberalism, 42–3, 235; resistance to, 49; social justice theories, 64–9, 76 inequities in mental health, frameworks of: and ethical theories, 63–74; and (re)distribution, 70, 72, 77–9. See also intersectional activism, analysis, and framework; post-colonial frameworks; social determinants framework insane liberation, 50n1. See also anti-psychiatry movement; mental patients’ liberation movement; Mad activism, politics, and liberation; Mad studies institutionalization, 34–8, 336, 343–5, 350–2, 398, 404, 449 insulin coma therapy, 117 interdisciplinarity, 64, 79, 142, 161n2 internalized homophobia (IH). See homophobia international classification of disease (ICD), 37 International Network of People Who Use Drugs (INPUD), 371 Internet and American Life Project (Pew Research Center), 286 intersectional activism, analysis, and framework, 20, 62–3, 77, 146, 268, 269, 355, 386 intersectional and Mad studies frameworks, 33–59 intersectionality, 20, 419; about, 386; Black feminists, 337–8; data analysis of, 396; explanation, 46–7; and Indigenous peoples, 170; and Mad studies, 46–9; overview, 10, 11, 12, 13, 17, 18, 20; and poststructuralism, 255; queer theory perspectives, 450–2; scholarship on approach, 47; social justice,

Index 495 and mental health inequities, 77–9; term usage, 447. See also feminism and feminist movement; feminist theories; Indigenous themes; lesbians and lesbianism; post-colonial frameworks; resistance; sanism; social justice approaches intersectionality approach to resilience research, 443–74 Intersectionality-Based Policy Analysis Framework (IBPA), 47–8 intersex and intersexuality, 256–7, 261–2, 264, 266–70 Intersex Society of North America, 270 Iraq. See Assyrian refugees “It Gets Better” campaign, 467 It Takes All Kinds (1950), 347, 353 Jealousy (1954), 342 Jean Vanier Opens First L’Arche House (1965), 345 Joseph, Christine. See Wa’ta (Christine Joseph) Junkiebond (Rotterdam, Netherlands), 368 Kamloops Aboriginal Friendship Society (formerly the Interior Indian Friendship Society), 166, 171, 178 Kanani, N., 449 Karen refugees, Australian study, 212–16 Kennedy, N., 257, 269 Kenya, 114–21, 128 Kenya National Commission on Human Rights (KNCHR), 115, 120, 131 Keropudas Hospital (Finland), 42

Kirby, Michael, 118 Kirkham, S.R., 76, 77 knowledge-power nexus, 38–42. See also biomedicine Koggel, C.M., 69 Kreitzer, L., 121 Krieger, N., 6 Kwakwaka’wakw: museum and cultural centre, 162n11; teachings, 144 Lafrance, Michelle, 209–10 Lang, Sabine, 259 language arts. See arts-based methods Laqueur, Thomas, 288 L’Arche houses, 345–6 Lawrence, B., 152, 181 Laying Our Stories Bare project, 162n12 Leaky, Louis, 118 Lemke, T., 234, 235 lesbian, gay, bisexual, trans, intersex, queer, two-spirit (LGBTIQ2S). See LGBTIQ2S lesbians and lesbianism: in arts-based research, 397–8; hospitalized for, 33–4; and intersectionality, 170; in the workplace, 243, 456. See also Australia; homosexuality; LGBTIQ2S; queer and queer theory Let’s Talk campaign, 320 LGBTIQ2S, 33, 153, 268, 443, 451, 467, 469n2. See also gay men; homosexuality; intersex and intersexuality; lesbians and lesbianism; queer and queer theory; transgender; two-spirit Li, T.M., 240–1, 247 libertarian rights-based approaches to social justice, 65–6

496 Index Liegghio, M., 63, 70 Like a Death Sentence (Human Rights Watch), 115 Lincoln, Y.S., 76–7, 79 lived experience: access through artsbased research, 387; at centre of social justice frameworks, 46; legitimate or valued, 34, 78, 403, 417, 449, 457–8; women in psychiatric hospitals, 400 Llewellyn, J.J., 69 Locked Up and Forgotten (CNN), 131 Loewen, A., 352 looking in one direction (concept), 171 Lopes, Tina, 433–4 Lunacy Act (African countries), 118–19; in Nigeria, 132 Luxton, M., 43 Lyautey, Hubert, 116 Macfarlane, E., 66 MacKay, G., 180 Mad activism, politics, and liberation, 10, 22, 35–6, 50n1, 50n6, 69–70, 93, 326–7, 355 “Mad Mullah.” See Hassan, Mohamed Abdullah madness in the media, 333–61 Mad People of Colour Manifesto, 93 Mad studies, 10, 11, 33–49, 355 Making Sex (Laqueur), 288 maldistribution and misrecognition, 72–4 Manuel, George, 179 Marcedo, Donald, 141 Marcus, S., 451 marginalization, defined, 416 Marsella, A.J., 98

Marsh, Teresa, 150 masculinity, idealized, 347 material-discursive-intrapsychic (MDI) approach, 37, 200, 216, 217 Mathari Lunatic Asylum, Kenya, 118; documentary about, 131; escaped patients, 124 Mau Mau uprising, 117, 118 McKenzie-Mohr, Sue, 209–10 McNeil-Seymour, Jeffery, 182 MDI approach, 37, 200, 216, 217 media, madness in, 333–61 media as a site of social (in)justice. See madness in the media; prevalence problematic in mental illness discourse Megaphone (Street Corner Media Foundation), 382n1 mental distress versus mental health or mental illness, 36, 50n4, 349 mental health: alternate modes of portraying, 313, 329n6; awareness campaigns, 313, 328n5; decolonization of research, 169–70; frameworks of inequities, 40–1, 62–3; global, 124–7; services and supports for women, 414, 415; for urban Indigenous youth, 165–93; and worker productivity, 238–40. See also mental distress versus mental health or mental illness; mental illness Mental Health Act (African countries), 118–19 Mental Health Act (India, 1987), 97 Mental Health Commission of Canada (MHCC), 229, 324 Mental Health Gap Action Program (mhGAP), 96, 124

Index 497 mental health users’ associations, 129–32 Mental Hospital (1953), 345 mental hospitals: psychiatric racism, 115–19 mental illness: age of onset, 388; assumption of treatment, 326; context, 426; depression as, 249n1; illness versus social context, 39; need for expert, 312–25; prevalence problem, 312–32; prevalence statistics, 312, 327–8n1; “problem people,” 318; reconfiguration of dissent and distress, 91; and sexual abuse, 389; stereotypes, 346; study using arts-based methods, 395–400; term usage and alternatives, 333, 357n1. See also biomedicine; mental health; psychiatrization; psychosocial disability mental injuries, government policies on, 249n3 mentalism. See sanism mental patients’ liberation movement, 34, 35–6, 50n1, 50n2. See also anti-psychiatry movement; Mad activism, politics, and liberation; Mad studies mganga (traditional healer, Swahili), 123 Miller, Peter, 233–4, 240 Moncrieff, J., 94 Morris, J., 67, 72 Mosher, Loren, 92–4, 99 movement (gesture and improvisational). See arts-based methods Movement for Global Mental Health, 89, 93–4, 96, 98, 114, 124–5 MSM, 461–6; term usage, 443, 462, 468n1; young, transgender, 464

Multicenter AIDS Cohort Study, 461 Mwasipile, Ambilikile “Babu,” 123 ‘Namgis Nation, 143–4, 149 Nandy, A., 90, 99, 102 NAOMI Patients Association (NPA), 365–85 National Association of Friendship Centres (NAFC), 166, 172 National Film Board (NFB), 336 National Gay and Lesbian Taskforce, 267 National Institute of Mental Health, 267 National Standard, 244 Nedelsky, Jennifer, 66 neocolonialism, 63, 173, 416. See also colonialism; settler colonialism neoliberalism, 322, 354–5; activism against, 49; and biomedicalism, effect on policy, 39, 42–6; definition, 43; feminist analysis and depression, 242–7; and governmentality, 233–9; government support of, 48; and libertarianism, 65; overview, 8, 10, 12, 13, 16, 33. See also depression in the workplace New Future, A (CBC), 342 Newman, S.C., 315, 327–8n1 Nhat Hanh, Thich, 162n13 Nigeria, 120, 122, 126, 132 Nkwenkwe, Nonthetha, 119 non-compliance, 255–82, 265–6 non-conformity (gender) or psychiatric non-compliance, 255–2 non-expert help, 312–25 normal/abnormal, 262–3, 338, 344 North American Opiate Medication Initiative (NAOMI), 365–85

498 Index Nothing about Us without Us (Canadian HIV/AIDS Legal Network), 369–70 NPA. See NAOMI Patients Association (NPA) OECD, 249n2 “On Not Being White” (Shepherd), 447–8 “Open Dialogue” (Finland), 42 Opening Minds, 324 operationalizing social justice in mental health: intersectionality, social justice, and mental health inequities, 77–9 Opium Act (Canada, 1908), 366 oppression and oppressive systems or practices: and arts-based research, 400–4; experience of, 424, 429, 430; intersecting systems of, 75, 170, 269, 271, 337, 419, 447, 455; of Mad subjects, 48–9; overview, 12–15, 19, 20, 22, 113–14, 386–7; psychiatrization as, 63; and settlers of colour, 153–4; in social context, 95; and social justice theories, 66–74; stigma as social oppression, 323. See also biomedicine; capitalism; colonialism; heterosexism; patriarchy; poverty; sanism; sexism Organisation for Economic Cooperation and Development (OECD), 249n2 Organization Intersex International Australia, 256 Organization of African Unity (OAU), 114 Orn, H., 315, 327–8n1 Osborn, Bud, 369

Other, person as, 323–5 Our Bodies, Ourselves (Boston Women’s Health Collective), 265–6 Palestine, 91, 94 Pan African Network of People with Psychosocial Disabilities (PANUSP), 102, 114, 129 Pan African Network of Users and Survivors of Psychiatry. See PANUSP Pancha Mahabhutas, 140 PANUSP, 102, 114, 129 parity of participation, 74, 77–9 Parr, H., 392–3 participatory action research (PAR), 172–3, 459. See also communitybased (participatory) research Patel, V., 95 patriarchy: analysis of, 33–4; and colonialism, 182, 259–60, 339; as form of oppression, 416–17, 429, 448, 454; overview, 12; service delivery outside of, 102; structural, 88 people living with HIV/AIDS (PHAs), 446, 457, 469n3 people of colour, 143–4, 151–3, 330–1, 447, 451, 464. See also intersectionality; racialization Pew Research Center, 286 pharmaceutical industry, 92–4. See also psycho-pharmaceuticals PHAs, 446, 457, 469n3 photography. See arts-based methods Physical Treatment (1957), 344 politics of difference, 69–71 positivism, 76, 354 post-colonial feminism, 63, 77. See also feminism and feminist movement

Index 499 post-colonial frameworks, 40–1, 63, 94, 152. See also decolonization; feminism and feminist movement; intersectionality postmodern feminist theories, 69–70, 78 post-natal depression, 218 post-structuralist theory, 255 post-traumatic stress disorder (PTSD), 38, 424–6 poverty: in African countries, 126; from effect of colonialism, 167; experience of, 149, 153, 155, 235; as form of oppression, 46, 47; intersection with other structural factors, 419–20, 422, 428–9, 431–2, 453; and other risk factors, 389; psychiatric perception of, 91; responsibilization of, 235; as structural factor, 36, 43, 68, 73, 169, 368, 380, 389, 414–16 power: analysis of, 49, 76, 417–18, 452, 454; from colonialism, 63, 172; Foucault’s model, 71, 201, 250n5; making disparities visible/explicit, 80, 291, 387; perceptions of, 199; of psychiatric experts, 261–5; relations of, 46–8, 68, 96, 349–50, 415, 421–3, 448; between researchers and participants, 390–4; role in social justice, 40 premenstrual changes, 197–228; Anglo-Australian study, 200–12; Assyrian and Karen refugee study, 212–16; and care of self, 206–8; coping strategies, 204–10; descriptions of, 201–2; list of symptoms, 198; lived experience, 200; normalization of, 202–4; versus PMS, 218; positive, 199–200; and relational

responsibilities, 208–10; responses by others, 210–12; and stress/conflict avoidance, 204–6; vary across cultures, 197–8 premenstrual dysphoric disorder (PMDD), 197 premenstrual syndrome (PMS), 197, 198, 210–12, 215, 219 premenstrual tension. See premenstrual changes prevalence problematic in mental illness discourse, 312–32 Prince, R.H., 126 “processes of differentiation,” 448 psychiatric non-compliance, 255–82 psychiatric racism: mental hospitals as, 115–19 psychiatric survivors, 36, 50n1, 327, 357n1 psychiatrization: definition, 63; of gender non-conforming people, 271–2; global, 87–109, 119; of intersex and transgender children, 261–2; lived experience of, 36; and Mad studies, 48; overview, 11, 14, 22 psychiatry: alternatives to, 101; bolstered patriarchy, 34; colonial, in Africa, 113; conferences on, 50n5; decolonization of, 100–3; by early feminists, 33–7; as form of colonization, 89–92; gender non-conformity as pathological, 257; normalized, 39, 50n7; organizations against, 103n1; radical, by Mad activists, 36; redefined as psycho-pharmacology, 94. See also anti-psychiatry movement; biomedicine; colonization; mental patients’ liberation movement; psychiatrization

500 Index “Psychology of the Mau Mau, The” (Carothers), 118 psycho-pharmaceuticals, 93, 99, 102, 125 psychosocial disability, 113, 133n1 Psychosurgery and Shock Treatment (1959), 344 “psy-” disciplines. See biomedicine; psychiatrization; psychiatry public education, films on mental illness. See madness in the media qualitative versus quantitative research, 174; comparative importance of, 41 queer and queer theory, 443, 450–2, 469n2. See also gay men; homosexuality; intersex and intersexuality; lesbians and lesbianism; LGBTIQ2S; transgender; two-spirit race, 62, 68; assumptions about, 296; and drug policies, 366; effects of, 455; and indigeneity, 462; intersection with age, 395; intersection with gender, 40, 178, 337, 350, 447, 448; intersection with gender and illness, 398; and mental illness, 394; overview, 3, 7, 11, 13, 142, 333, 334, 386; as social factor, 292, 354; as structural factor, 67. See also arts-based methods; colonization; intersectionality; madness in the media; people of colour; settler colonies and communities racialization, 90–1, 115–17, 386, 389, 395, 403, 463–4; effects of, 245–8, 340–2; racialized identity, 143–4, 151–2, 230

racism: anti-racist frameworks, 152; and colonization, 154; experience of, 153; as form of oppression, 34, 46, 49; ideologies that support, 40; institutional, 167; intersected with classism and genderism, 63, 419; intersected with sexism, 447; overview, 10, 11, 33, 34; psychiatric, 115–19; and settler colonialism, 449; as structural factor, 36, 169, 414, 429, 454; in the workplace, 244 Ramsden, Irihapeti, 172 Raphael, D., 62 rationalist liberal individualism, 66 Rawls, J., 66 Raymond, Janice, 301–2 Razack, S.H., 4 Recent Modifications of Convulsive Shock Therapy (1941), 344 recognition, politics of, 69–74, 76–9 Recovering Lives (film), 393 recovery: overview, 386–92, 395–407; projects, 103n redistributive paradigm: egalitarian theories, 66–8; libertarian rightsbased approaches, 65–6; utilitarian approaches, 64–5 reductionism, 6, 78, 99 reflexivity, 185; reflexive gaze or lens, 76, 78; self-reflexivity or selfreflexive praxis, 322, 449, 458–60, 463, 467 relational approaches to social justice: discussion of, 62–3, 64, 66, 69–80, 204, 208–10, 292, 419–23, 431–4; overview, 9, 13–14, 16, 61. See also arts-based methods; critical realist epistemology and approach; MDI approach; social justice approaches

Index 501 researcher-as-bricoleur, 79 research spaces, creation of using artsbased methods, 386–412 residential schools, Canada, 143–4, 149, 160, 177, 179–80, 342, 350 resilience, definition of, 445 resilience-based approaches to gay men’s health research, 452–60; conceptual framework, 453f resilience research, 443–74; conceptual framework, 445; and race, 463 resistance, 87, 99, 138, 154, 271, 444; affirmation of, 455–7, 468; to colonization, 89, 90, 96, 147, 160; to diagnosis, 425; to dominant biomedical framings, 286–91; experience of, 147, 148, 152; to gender conformity, 256, 266, 267; and intersectionality, 337, 449; overview, 14, 20, 21, 22, 103, 216–17, 219–20; to psychiatry, 102, 255; reconfigured by psychiatrization, 91, 92, 93, 95, 98, 100, 101, 118; speaking out as essential to, 269; through arts, 402; by women with PMS, 200, 204, 210. See also intersectionality approach to resilience research; Indigenous youth (urban) responsibilization, 43, 50n8, 235–8 rest, 165 re-traumatization, 66, 434. See also trauma Rheingold, H., 287 Riverview Hospital (Coquitlam, BC), 45 Rofes, Eric, 444, 456 Rose, Nikolas, 39, 50n7, 233–4, 236, 240 Royal Canadian Mounted Police (RCMP), 366, 456

SALOME/NAOMI Association of Patients (SNAP), 366, 378–82. See also NAOMI Patients Association (NPA) sanism: definition, 10, 40, 63; intersectionality of, 47, 49; in list of oppressive systems, 11, 34, 46, 49 sanity-insanity as binary, 73 Savage, Dan, 467 schizophrenia, 343, 388, 392 Schön, U.K., 389, 405 Second World War, 334 Secwepemc peoples, 165–6, 171, 179 self-policing. See self-surveillance self-reflexive praxis. See reflexivity self-silencing. See self-surveillance self-surveillance, 146, 202–6, 209, 263. See also silenced Sen, Amartya, 67 Senate Standing Committee on Aboriginal Peoples (2003), 166 serotonin reuptake inhibitors (SSRIs), 204 settler colonialism, 4, 91, 145, 153, 154, 449, 451. See also colonialism; colonization; decolonization settler colonies and communities, 93, 116, 144–5, 153. See also Indigenous themes sexism: as form of oppression, 46, 49, 454; intersection with cisgenderism and sanism, 255; intersection with racism, 447; overview, 7, 11; shaped by psychiatry, 35; as structural factor, 36, 40, 169, 181, 262; in the workplace, 244 sexuality, 37, 47, 68, 182, 183, 213, 262, 443–4, 456; overview, 3, 7, 13, 15, 21. See also gay men; intersex and intersexuality; lesbians and

502 Index lesbianism; LGBTIQ2S; queer and queer theory; transgender; two-spirit Shalhoub-Kevorkian, N., 91 Shepherd, Reginald, 447–8 Sherwin, Susan, 66 Shildrick, M., 70 Shiva, V., 138 Shorter, Edward, 218 silenced: because of difference, 70, 145–6, 154; by biomedical system, 115, 131, 158, 421–4. See also self-surveillance Silenced Mind (KNCHR), 115, 131 Small, Dan, 370 Smith, Dorothy, 426 Smith, Linda Tuhiwai, 152 Snap Out of It (1951), 343 social class. See class and classism social constructionism: approaches to sex/gender, 264; feminist, 198. See also constructivism and constructivist epistemology social determinants framework, 40, 62–3, 167, 465 social engineering. See madness in the media social justice: definition, xii, 9; operationalizing social justice in mental health, 75–80; theory, 60–86. See also intersectional and Mad studies frameworks social justice approaches. See capabilities-informed approaches to social justice; critical relational approach to social justice; decolonization; feminist analysis; intersectionality; libertarian rights-based approaches to social justice; material-discursiveintrapsychic (MDI) approach;

utilitarian approaches to social justice social justice dialogues and decolonization, 138–64 social justice praxis, research refashioning for. See NAOMI Patients Association (NPA); research spaces; resilience research; women with experience of abuse, services and systems social policy, cuts to government funding, 43–5 Somalia, 119 South Africa, 119, 128 Spade, D., 11 Spitzer, Robert, 266 Sterne, Jonathan, 290 stigma, 45, 130, 323–6, 422, 464; accompanying a mental health ­diagnosis, 60, 62–3, 175, 287, 314– 15, 327, 391, 392, 398, 418, 425; from association with prisons, 118; creation of, from socio-­structural processes, 9; decrease of, 75, 118, 313, 315–16, 392; experienced by gay men, 461, 463; institutionalized, 11, 72, 113, 422–3, 429, 431; layperson accused of creating, 318–19, 321–2, 326; overview, 3, 15, 65; from pathologization of gender difference, 266–7, 271; of PMS (as madness), 220. See also discrimination Still Sane (art exhibit) (Gilhooly, Blackbridge), 33–4 St Michael’s Residential School, 149, 150, 162n10 storytelling through dance, 139 storywork, 173–4 stranger danger, 335, 340–1, 346

Index 503 structural racism, 36, 40, 46, 67, 169, 174, 177, 179, 181, 414. See also race; racism; racialization structural violence, 75, 80n3, 155, 246 Study to Assess Longer-Term Opiate Medication Effectiveness (SALOME), 378–82 substance use, harm-reduction approaches, 64–5 suicide, 95–6 Summerfield, D., 96, 100 Sunseri, L., 180 surgery, for gynecomastia or for sex-reassignment, 286, 303, 304, 309n18 survivors’ associations, 129–32 Sylvia Rivera Law Project, 457–8 Symptoms of Schizophrenia (1940), 344 Szasz, T., 261 Tanzania, 123, 127 Thachuk, A., 39 Thinking the Internet (Sterne), 290 Thiong’o, N., 102 Thomas, Barb, 433–4 Thompson Rivers University, 166 Thomson, Garland, 318 Thorne, S., 78 Tiefer, L., 266 Tk’emlúps, the city of Kamloops, 166 T’lisalagi’lakw school, 162n10 Tracking the Perfect Legal Storm (MHCC), 233 trans. See transgender transgender, 256, 271, 287, 272n4. See also gay men; intersex and intersexuality; lesbians and lesbianism; LGBTIQ2S; queer and queer theory; two-spirit

trans man: versus transman or cisman, 293–8, 308n13 transphobia, 260–1 Transsexual Empire, The (Raymond), 302 transsexualism, 272n2 transsexuality, gynecomastia, and mental health diagnoses in online communities, 285–311 Transsexual Menace and GenderPAC (Gender Public Advocacy Coalition), 266 trauma, 151, 157, 416; from colonization, 141, 145, 148, 168–9; embodiment of, 139; from gynecomastia, 290; psychiatry, 424; psychological impact of, 120, 400, 405, 462–3; recovery from, 70, 143; responses to, 159, 425–6, 432; as structural factor, 453; term usage, 80. See also re-traumatization; violenceand trauma-informed framework/ toolkit trauma-informed care, 168, 186n2 trauma-informed framework. See violence- and trauma-informed framework/toolkit Trute, B., 352 Tuck, E., 140, 153, 167, 173 two-spirit, 182, 259, 273n6, 273n7. See also Indigenous themes; LGBTIQ2S Uganda, 128 Ulcer at Work (1957), 344, 351 U’mista Cultural Centre, 149, 162n11 unemployment: as barrier, 428–9; decrease in insurance, 44; increase in, 43–4. See also depression in the workplace; employment

504 Index urban-rural contexts, 176, 180 Users and Survivors of Psychiatry (USP), 131–2 utilitarian approaches to social justice, 64–5 Vancouver Area Network of Drug Users (VANDU), 369, 371 Varcoe, C., 77, 78, 413, 429 victimization, 257–8, 260–2, 425, 429 violence against women, 413–42 violence- and trauma-informed framework/toolkit, 20, 416, 431–5. See also re-traumatization; trauma visual arts, used in arts-based research, 393 Voices of the Street / Megaphone, 382n1 Wade, A., 455 Walia, H., 153 Warrendale (1967), 345, 346 Wa’ta (Christine Joseph), 144 Waziyatawin, 139 Wepa, Dianne, 172 Where the Spirit Lives (Haldane and Jordan), 149 White settlers. See settler colonies and communities Wildeman, S., 66 Wilkinson, John, 118 Wilson, Michael, 229

Winters, K., 257 “Wise Practices in Campus and Community Partnerships” (Clark, Hunt), 183–5, 186n3 Witchcraft Suppression Act, 119 Wodak, A., 64–5 Woman Abuse Response Program (WARP), 414 Women and Madness (Chesler), 36 women with experience of abuse, services and systems, 413–42 women with mental illness: arts-based methods, 395–400 Woolf, Virginia, 207 World Health Organization (WHO), 89, 93–4, 101–2, 114, 370 World Network of Users and Survivors of Psychiatry (WNUSP), 114, 129, 132n1 World Professional Association for Transgender Health (WPATH), 260, 289 Yajima, Sayaka, 162n12 Yalamarty, Harshita, 162n12 Yang, K.W., 140, 153 Yee, Jessica, 183 Young, I.M., 9, 68, 69–70, 71, 452 Younglai-Case, Maïmouna, 162n12 Zambia, 131 Zimbabwe, 116