Women’s Health in Canada: Challenges of Intersectionality, Second Edition [2 ed.] 9781442623958

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WOMEN’S HEALTH IN CANADA Challenges of Intersectionality, Second Edition Edited by Marina Morrow, Olena Hankivsky, and Colleen Varcoe

Women’s Health in Canada considers the challenges relating to the conceptualization of women’s health. While emphasizing the importance of taking an intersectional approach to women’s health care, this book also focuses on the social and structural determinants at play. This revised and updated second edition brings together a collection of new chapters and contributors who collectively shed light on the problems and risks involved in perceiving women’s health care using a strictly “gender”- or “sex”-based lens. Contributors foreground an understanding of power as it is mediated through a range of social relations based on gender, race, culture, ethnicity, sexuality, ability, class, and geography and the ways in which privilege and oppression intersect to shape health and system responses to health. This new edition includes updates on what is currently known about women’s health nationally and internationally and situates the chapters in the current Canadian health care and policy context. Scholarship is foregrounded in new developments in gender and intersectional health research and policy. Collectively, this volume explores the important histories and contemporary realities in women’s health experiences. marina morrow is a professor and chair in the School of Health Policy and Management at York University. olena hankivsky is a professor in the School of Public Policy at Simon Fraser University. colleen varcoe is a professor and associate director in the School of Nursing at the University of British Columbia.

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S E C O N D

E D I T I O N

WOMEN’S HEALTH IN CANADA CHALLENGES OF INTERSECTIONALITY EDITED BY

MARINA MORROW

·

OLENA HANKIVSKY

·

COLLEEN VARCOE

UNIVERSITY OF TORONTO PRESS Toronto Buffalo London

©  University of Toronto Press 2022 Toronto Buffalo London First edition published in 2007 utorontopress.com Printed in the U.S.A. ISBN 978-1-4426-5049-7 (cloth)    ISBN 978-1-4426-2396-5 (EPUB) ISBN 978-1-4426-2847-2 (paper)   ISBN 978-1-4426-2395-8 (PDF) All rights reserved. The use of any part of this publication reproduced, transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, or stored in a retrieval system, without prior written consent of the publisher – or in the case of photocopying, a licence from Access Copyright, the Canadian Copyright Licensing Agency – is an infringement of the copyright law. Library and Archives Canada Cataloguing in Publication Title: Women’s health in Canada : challenges of intersectionality / edited by Marina Morrow, Olena Hankivsky, and   Colleen Varcoe. Names: Morrow, Marina Helen, 1963– editor. | Hankivsky, Olena, editor. | Varcoe, Colleen, 1952– editor. Description: Second edition. | Previous edition had subtitle: Critical perspectives on theory and policy. Identifiers: Canadiana (print) 20210369132 | Canadiana (ebook) 20210369175 | ISBN 9781442628472 (softcover) |   ISBN 9781442650497 (hardcover) | ISBN 9781442623965 (EPUB) | ISBN 9781442623958 (PDF) Subjects: LCSH: Women – Health and hygiene – Canada. | LCSH: Women's health services – Canada. |   LCSH: Medical policy – Canada. | LCSH: Women – Health and hygiene – Sociological aspects. Classification: LCC RA564.85 .W68 2022 | DDC 613/.042440971 – dc23 We welcome comments and suggestions regarding any aspect of our publications – please feel free to contact us at [email protected] or visit us at utorontopress.com. Every effort has been made to contact copyright holders; in the event of an error or omission, please notify the publisher. We wish to acknowledge the land on which the University of Toronto Press operates. This land is the traditional territory of the Wendat, the Anishnaabeg, the Haudenosaunee, the Métis, and the Mississaugas of the Credit First Nation. 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.

As editors and contributors, we are thrilled that our intellectual engagement and friendship with one another has continued to evolve since the first edition of Women’s Health in Canada. We are fortunate to have been able to sustain our conversations about “women’s health” and to contribute to the ongoing discussions and debates that are shaping the field. As we write this, the world is undergoing a global COVID-19 pandemic that is laying bare social and structural inequities that raise critical questions about the importance of intersectionality and about how health and “women’s health” are shaped through intersecting systems of power based on colonialism, sexism, racism, heterosexism, and ableism. We want to dedicate this book to everyone engaged in social justice activism. We hope this volume will support you in challenging the ongoing oppression of people globally and working towards social conditions that support health and well-being for all.

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Contents

List of Figures, Tables, and Text Boxes Acknowledgments Introduction. Women’s Health in Canada: Critical Intersectional Perspectives on Theory and Policy olena hankivsky, marina morrow, and colleen varcoe

xi xiii

1

Part One. Conceptual Foundations   1  Women’s Health in the Twenty-First Century olena hankivsky

13

  2 Overhauling Life Course Approaches to Women’s Health: Towards an Intersectional Approach36 olena hankivsky and cole etherington

Part Two. Historical Foundations   3  Historical and Contemporary Reflections on the Women’s Health Movement in Canada 61 marina morrow and christabelle sethna

  4 Elder Abuse as a Health Issue: Barriers Faced by Older Immigrant Women in Accessing Services sepali guruge and atsuko matsuoka

99

viii

Contents

  5  All Our Relations: Indigenous Women’s Health in Canada

116

  6  Reproductive Politics: Reproductive Choice to Reproductive Justice

148

billie allan and janet smylie holly A. mckenzie

Part Three. Methodological Foundations: Operationalizing Social Justice and Social Change  7 Decolonizing Research

165

  8  From Gender Mainstreaming towards Mainstreaming Intersectionality

186

  9  Beyond Sex and Gender Differences in Funding and Reporting of Health Research

209

10  Engaging Communities: Intersectional Participatory Action Research

231

11 Intersectionality-Based Quantitative Health Research and Sex/Gender Sensitivity: A Scoping Review

254

colleen varcoe and holly A. mckenzie olena hankivsky and gemma hunting

olena hankivsky, kristen w. springer, and gemma hunting

marina morrow, colleen reid, ania landy, sabina chatterjee, wendy frisby, cindy holmes, and audrey yap

emily mena and gabriele bolte, on behalf of the advance gender study group

Part Four. Exemplifying Change (Health Policy and Practice) 12 Social Influences on Injection Drug Use among a Community Sample of Sex Workers: Intersections of Structure and Agency across the Life Course

275

13  Towards a Broader Conceptualization of Trans Women’s Sexual Health

291

14 “Women and Madness” Revisited: The Promise of Intersectional and Mad Studies Frameworks

311

cecilia benoit, mikael jansson, rachel phillips, helga k. hallgrímsdóttir, and kate vallance greta R. bauer and rebecca hammond

marina morrow

Contents

15 The Intersecting Social and Structural Contexts of Navigating HIV Risk and Access to Care among Women

331

16 Social Transformation and Urban Regeneration: Well-Being and Women’s Marginalization in Community Contexts

348

17  Violence against Women: Intersections of Health and Justice

371

18 Evolving Disability Scholarship and Activism in Canadian Contexts: Making Room for Intersectionality

391

19 Understanding Migrant Women’s Health: Looking through Intersectional, Gendered, and Human Rights Lenses

409

20  An Intersectional Analysis of the Ontario Dementia Strategy

423

21 Prioritizing Non-communicable Diseases at the Intersections: Global Action in the Canadian Context

436

List of Contributors

453

andrea krüsi and kate shannon

judith sixsmith, ryan woolrych, and mei lan fang kate rossiter

christine kelly

bilkis vissandjée and ilene hyman ngozi iroanyah

olena hankivsky, claire sommerville, and mary manandhar

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Figures, Tables, and Boxes

Figures 2.1

Conceptual framework for women’s health  47

7.1

A decolonizing team  167

6.1 9.1 9.2

9.3 12.1

Jayda Delorme’s bodypainting of Kayla Ward, dedicated to MMWG2S  153 Health journal search  215

Funding agency search  216

Considerations of sex/gender and diversity by country  219

Photo from Hot Pink 2019, a fundraiser for Peers Victoria, an organization that provides support for sex workers  284

16.1 and 16.2 Meaningful places in the local community  362

16.3 and 16.4 Environmentally dilapidated sites of social well-being  363 16.5 and 16.6 Barring community from community spaces  363 17.1

Sadness 377

21.1

Example of cause-effect relationship of drivers and risk factors for noncommunicable diseases  439

20.1

21.2

Ngozi Iroanyah with her dad, Felix Iroanyah, sharing a tender moment  432

Conceptual framework for a life course approach to health  447

Tables 11.1 Intersectionality Theoretical Framework or Terminology and Definition and Function of Intersectional Variables in Multivariable Analysis  260

xii

Figures, Tables, and Text Boxes

11.2 11.3 11.4 11.5 12.1 13.1 13.2 13.3

Operationalization of Sex/Gender and Information about Data Collection  262 Use of Solution-Linked Sex/Gender Variables  262 Use of Sex/Gender Theories in Intersectionality-Based Quantitative Analyses  263 Use of Central Sex/Gender Theoretical Concepts and Processes for Explanation of Intersectional Sex/Gender Differences  264 Influences on Injection Drug Use  282 Sexual Orientation of Trans Women in Ontario, Canada  296 Sexual Activities and Concerns of Trans Women in Ontario, Canada  297 Suggestions for Research, Practice, and Supporting Trans Women’s Sexual Health  306

Boxes 9.1 9.2 9.3 9.4 21.1

Instructions for Authors and Peer Reviewers  212 Sex and Gender Equity in Research (SAGER) Guidelines: General Principles  213 Authors’ Checklist for Gender-Sensitive Reporting  213 Recommendations for Sex/Gender and Health Research  224 Actions to Promote Gender-Transformative Approaches in the Sustainable Development Goals to Improve Health  443

Acknowledgments

The second volume of Women’s Health in Canada had many helping hands. We would especially like to thank our editors at the University of Toronto Press for suggesting a second edition and for guiding us through the process, our anonymous peer reviewers for their thoughtful comments and suggestions, and Katie di Pierdomenico for her excellent support in preparing the final manuscript.

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INTRODUCTION

Women’s Health in Canada: Critical Intersectional Perspectives on Theory and Policy Olena Hankivsky, Marina Morrow, and Colleen Varcoe

“The very idea of women’s health is a ‘concept’ in the making (Anderson, 2004).” So began the first volume of Women’s Health in Canada: Critical Perspectives on Theory and Policy, which was released in 2007. More than a decade later, this statement remains relevant. Indeed, we gave pause to the very notion of producing another edition of a book focused on women’s health. While gender is undeniably an important social position, we were concerned that an ongoing focus on women and women’s health could run counter to our current intentions in at least four interrelated ways. First, we were concerned that such a focus would reinforce the tendency to privilege gender as the most important category of analysis in health and health research, policy, and practice. Second, we were concerned that the focus on women implicitly supports a binary understanding of gender and hetero-cis-normativity bias. Third, we felt that a focus on gender has the potential to overshadow the multiple interacting identities and social locations that shape the lives of all people. Fourth, taken together, these dynamics can foster the Western liberal tendency to individualize health, not fully taking into account the social, economic, political, historical, and ideological contexts that shape people’s experience of health. With this pause, we determined to undertake this edition with an explicit intention to tackle and counter these propensities. Merely invoking an intersectional perspective is not a sufficient corrective to these dynamics. Indeed, some of the ways in which ideas related to intersectionality are taken up are problematic and, often, inherently flawed. Frequently, those that take up intersectionality fail to acknowledge its historic roots (in the activism and scholarship of Black and Indigenous feminists and feminists from the global South) or properly define its use in research with sensitivity to geographic location and specific contexts. Especially for those working in the areas of women’s health and gender and health, the tendency is to conflate different types of gender analyses with intersectionality, in part because of the practice of giving primary attention – without exception – to gender (see Hankivsky and Hunting, chapter 8, this volume), and because of the very dynamics that sustain racism, classism, and heteronormativity, and multiple other dynamics that sustain privilege.

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Hence, we endeavoured to create a collection that not only challenges the privileging of gender and the treatment of gender in a binary matter, individualizing and decontextualizing health, but also deepens and extends intersectional theorizing and analysis. The result is a collection of contributions that represent the most contemporary thinking related to health from an intersectional perspective. Intersectionality as a theoretical framework, methodological approach, and framework for policy development and analysis is gaining traction in many domains of health scholarship and activism and in health practice. Women’s Health in Canada: Challenges of Intersectionality is an important contribution to this growing body of work. Although we challenge the concept of “women’s health,” we are keenly aware that many material urgencies exist in the realities of women’s everyday lives and impact their health. Thus, intersectionality is not just of theoretical importance but an essential tool for activism and solidarity across the many diverse inequities that shape people’s lives. For example, the final report of the National Inquiry into Missing and Murdered Indigenous Women and Girls (MMIWG, 2019) clearly articulated the need for action at multiple intersections, concluding that “these violations amount to nothing less than the deliberate, often covert campaign of genocide against Indigenous women, girls, and 2SLGBTQQIA people” (p. 5). While the MMIWG and the report from the Truth and Reconciliation Commission of Canada (2015) mark two important historical moments in Canada’s recognition of the ongoing harms of colonial violence, Indigenous women and girls continue to experience disproportionate levels of violence, and many Indigenous communities still lack the basics for health (clean water and secure housing and income); Indigeneity and gender must be considered in the context of other intersecting influences, including access to basic necessities of life. To take another example, reproductive justice, which is under attack from all sides south of the border, and to a great extent in Canada, requires intersectional approaches to activism and solidarity across multiple identities and positionalities. In Canada, women continue to lack access to abortion and contraception, and racialized women, women living in poverty, and women with disabilities still fight for the right to be recognized as legitimate mothers. Indigenous women continue to be subjected to coercive contraception and irreversible sterilizations (McKenzie, 2019) and to having their children forcibly removed from their families in unprecedented numbers by the Canadian state (McKenzie et al., 2016), constituting a crisis in Indigenous parenting and child rearing. The health of people coming to Canada as refugees, people who are often marginalized by multiple intersecting inequities, is particularly at risk because of cuts made to the Interim Federal Health Program in 2012 and policy reforms passed that same year under Bill C-31 (Marwah, 2014). Despite the infusion of new funds in 2019, the system is mired in confusing bureaucracy. Globally, people of colour, immigrants, and refugees are increasingly under attack by right-wing white nationalist movements and growing Islamophobia. Although transgender people have made important political gains in health (see Bauer and Hammond, chapter 13, this volume), for example, obtaining coverage in most Canadian jurisdictions for at least basic surgical procedures for gender transitioning (Vander Wier, 2019), they continue to experience high levels of violence, stigma, discrimination, and unemployment. Similarly, women with disabilities – and especially those who reside in rural and remote areas – continue to fight for basic rights, such as access to health care, and this has been especially amplified by the COVID-19 crisis, despite gains in universal design in the built environment and inclusive education. As these examples show, there is much

Introduction

work to be done for equity, and thus the health of the Canadian population, and this work needs to be done from an intersectional understanding.

GROWTH IN INTERSECTIONAL RESEARCH AND POLICY Since the publication of the first volume of this book, a plethora of publications and policy developments have contributed to the advancement of the field, including attention to issues of diversity and intersectionality (for more detailed exploration, see Hankivsky, chapter 1, this volume). For example, in the Canadian context, guidance for advancing intersectionality in the context of women’s health has been published (Hankivsky & Cormier, 2009; Hankivsky et al., 2010) and in the wider field of equity (e.g., Hankivsky et al., 2011). In 2012 in a special volume of Social Science and Medicine focused on gender and health, Springer et al. (2012) set out three cutting-edge strategies for understanding sex/gender in the context of health research – relational, biosocial, and intersectional approaches – and featured intersectionality-informed gender research being conducted internationally. In that issue Hankivsky (2012) explored intersectionality in the context of women’s health, men’s health, and gender and health, including the methodological feasibility of intersectionality and the wide-ranging benefits of decentring gender through intersectional analyses. Reluctance to engage with intersectionality, however, has been fairly long-standing in leading policy and research initiatives. For example, in a widely cited 2007 primer Better Science with Sex and Gender: A Primer for Health Research ( Johnson et al., 2007), there is no mention of intersectionality. In the first edition of Women’s Health in Canada (Morrow et al., 2007) only a handful of contributing authors used intersectionality in their analysis. The Institute of Gender and Health Strategic Plan, 2009–2012 made no reference to intersectionality (Canadian Institutes of Health Research, 2009). In Designing and Conducting Gender, Sex and Health Research (Oliffe & Greaves, 2011), intersectionality is absent in the overall framing and introduction of the volume. In 2013 Pederson et al. (2013) argued that it is “too early to assess the extent to which this concept [intersectionality] can and will be used to design and deliver healthy living policies and programs.” A more recent key document in which intersectionality is completely absent is the 2016 Women’s Health: A New Global Agenda (­Norton et al., 2016) produced by the Oxford Martin School at the University of Oxford and the George Institute for Global Health. This agenda calls for redefining women’s health as more than sexual and reproductive health and to extend the definition to include the leading causes of death and disability for women, especially non-communicable diseases (see Hankivsky, Sommerville, and Mandhar, ­chapter 21, this volume), and to promote the value of a gendered approach to the collection and analyses of health data so as to identify and better understand both the biological (sex) and the sociocultural (gender) factors associated with differences and disparities in the occurrence and outcomes of health. The agenda proposes that a gendered analysis should facilitate improvements in health care and health outcomes not only for women but for all individuals, but it makes no mention of intersectionality and offers no attention to the ways in which gender intersects with multiple social factors. At the same time, in the last decade there has been a counter explosion of research in Canada and beyond using intersectionality and crossing the fields of women’s health and gender and health, proving the growing interest and, indeed, value-added of this perspective for advancing health

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equity. This includes, for example, Intersectionality: Moving Women’s Health Research and Policy Forward (Hankivsky & Cormier, 2009); Health Inequities in Canada: Intersectional Frameworks and Practices (Hankivsky, 2011), which explored pioneering intersectionality-informed health research in Canada; the development of an intersectionality-based policy analysis framework (Hankivsky et al., 2012); a special edition on gender and health for Social Science and Medicine that explicitly takes up intersectionality (Springer et al., 2012); a Canadian collection showcasing intersectional approaches in mental health (Morrow & Halinka Malcoe, 2017); a study of how intersectionality analysis can be combined with welfare state analysis to explain the distribution of economic and social resources among the population with attention to the situation and health of women occupying vulnerable social locations (Bryant & Raphael 2018); and the 2019 Palgrave Handbook of Intersectionality and Public Policy (Hankivsky & Jordan-Zachary, 2019), which includes numerous examples from the health field internationally and from Canada. In terms of relevant international policies drawing on intersectionality, select recent examples include the recently released World Health Organization (WHO) European Region’s Strategy on Women’s Health and Well-Being in the WHO European Region (WHO, 2016) and Strategy on the Health and Well-Being of Men in the WHO European Region (WHO, 2018). In the women’s health strategy, intersectionality is referenced, albeit using gender as the anchoring place. Namely, the report specifies that “consideration must be given to how gender intersects with other axes of social inequalities, such as ethnicity and place of residence, and the unequal distribution of social determinants of health such as income, education and employment” (WHO, 2016, p. 5). The 2016 report also urges, as an action point, “analysing and addressing intersections between biology, gender and social determinants of the mental health and well-being of girls and women from childhood to older age” (WHO, 2016, p. 9). The men’s health strategy (WHO, 2018), states that “the focus on men’s health has also been driven by a growing body of evidence that provides a better understanding of how gender intersects with other social, economic, environmental, political and cultural determinants influencing exposure to risk factors and interactions with health systems” (p. 3). Australia is also moving forward with similar strategies. The Australian Government Department of Health (2018a, 2018b) released drafts for public consultation of the National Men’s Health Strategy and National Women’s Health Strategy in October 2018. In the final report, National Women’s Health Strategy, 2020–2030 (Australian Government Department of Health, 2019a), it acknowledged that “the context of women’s lives – including gender, age, ethnicity, sexuality, disability, geography, education and literacy, socioeconomic status, employment status and work conditions – can shape health outcomes by influencing access to health care and experiences of health, wellbeing, illness and death” (p. 10). However, the only explicit mention of intersectionality is in the context of ­explaining that a life course approach should “acknowledge and respond to the intersectionality of health care and the determinants of health across the life span, and how this influences the health behaviours and outcomes for women and girls” (p. 19). The only explicit reference to intersections of experience/identity/oppression is the following: “Priority areas are inter-related and the Strategy recognizes the intersections between them. For example, mental health is considered a chronic condition, but given its prevalence as a health issue both among priority populations and also across the life course of women and girls in Australia; it receives specific attention as a separate priority area. Similarly, healthy ageing can only be achieved

Introduction

if health improvements are made in all of the priority areas” (Australian Government Department of Health, 2018a, p. 12). In the Men’s Health Strategy, 2020–2030 (Australian Government Department of Health, 2019b), it is acknowledged the diversity among men and boys and that the Strategy “coincides with an increased international focus on men’s health and on how gender intersects with social, economic, environmental, political and cultural determinants of health, influencing exposure to risk factors and interactions with the health system” (p. 6). In the United Kingdom, the Department of Health and Social Care released The Women’s Mental Health Taskforce Final Report in December 2018. Regarding diversity, the report specifies that “the Taskforce would like to see [gender-informed and gender-specific holistic] support accessible in every area, providing specialist treatment for women including those from diverse groups e.g. BAME, LBTQ+” (Department of Health and Social Care, 2018, p. 10). Regarding intersectionality, the report urges the use of an intersectional approach: “Wider experiences of inequality and discrimination can increase the risk of mental illness so the Taskforce took, and encourages others to take, an intersectional approach considering the overlap of social identities” (Department of Health and Social Care, 2018, p. 15). Regarding data, the report recommends, “Further research into whether there is sufficient ‘gender-sensitivity’ in research commissioning and/or through intersectional approaches to take account of women’s unique biochemistry, along with the multiple identities and range of experiences women have” (Department of Health and Social Care, 2018, p. 53). For further discussion of the use of intersectionality in mental health see Morrow, chapter 14, this volume. Most recently in 2021, Scotland became the first country in the UK to have a Women’s Health Plan, which outlines ambitious improvement and change in many areas, including menopause, heart health, and menstrual health, including endometriosis, and sexual health. Importantly, the Plan explicitly recognizes intersectionality: “The Women’s Health Plan aims to take an intersectional approach which recognises that many women and girls in Scotland will face multiple, and often overlapping, disadvantages and barriers to accessing good healthcare” (Scottish Government, 2021, p. 19) and states that “healthcare provision should be intersectional, gendercompetent and culturally competent” (p. 19) Canada has not had a national women’s health strategy since 1999. There is a National Action Plan on Gender Equality (Government of Canada, 2017), which references women’s health, but it is international in scope. It emphasizes that its focus is “challenging the discrimination women and girls face – recognizing that inequalities exist along intersectional lines – and designing our programs and policies accordingly” (p. 8). It also discusses gender-based analysis plus (GBA+), acknowledging that the “plus” goes beyond sex and gender (p. 18) and that is used to assess how “diverse” groups experience initiatives (p. 13) and provides detail on “multiple and intersecting discrimination” (p. 19). In Women and Gender Equality Canada’s 2020–21 (formerly Status of Women Canada) Departmental Plan (WAGE, 2020), WAGE (the lead federal department responsible for advancing gender equality, including with respect to sex, sexual orientation, and gender identity and expression) asserts that Canada is now both the single largest investor in sexual and reproductive health and rights and the single largest investor in women’s organizations at home and around the world, and it emphasizes the importance of an intersectional gender lens in all programs and initiatives, especially in relation to gender-based violence and the budget.

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Most work touching on women’s health explicitly is advanced by the Canadian Institutes of Health Research Institute of Gender and Health (IGH). The IGH focuses on examining how sex and gender influence health, and in the last decade, it has expanded from prioritizing funding women’s health research to addressing health challenges facing men, women, girls, boys, and gender-diverse people (for more in-depth discussion of recent policy development in the IGH see Hankivsky and Hunting, chapter 8, this volume). The only provinces that have released women’s health plans are BC (British Columbia Centre of Excellence for Women’s Health & BC Women’s Hospital and Health Centre, 2008), Manitoba (Manitoba Health, 2011), and Ontario (Ontario Government, 2011). The Report on the Women’s Health Strategy for BC, 2004–2008 (British Columbia Centre of Excellence for Women’s Health & BC Women’s Hospital and Health Centre, 2008) references diversity and implies an intersectional approach: “Important differences exist among British Columbian girls and women including variations in age, sexual orientation, language, ability, geographic location, education, and income. These differences affect women’s capacity to participate fully in society and experience optimal health” (p. 9). Manitoba’s Women’s Health Strategy (Manitoba Health, 2011) references diversity: “Manitoba’s women are diverse. Gender, race, ethnicity and culture, disability, age, income, geography and sexual orientation have an impact on women’s health status. All Manitoba women need access to health services that take this diversity into account” (p. 3). It also recommends the province “improve capacity for gender and diversity analysis for policy and program planners across government and in the regions” (p. 12). The Ontario Women’s Health Framework (Ontario Government, 2011) acknowledged under its first priority area for action that Ontario should reduce health inequities resulting from women’s social roles and status, acknowledging that sexual orientation, (dis)ability, ethnicity, and English language skills are significant factors that affect women’s health and influence whether they seek out health services. The framework also explicitly highlighted that Indigenous women are among the most disadvantaged because of the significant history of cultural interference and oppression that they have experienced. None of these reports explicitly mentions intersectionality. Compared to what is transpiring internationally, Canada is lagging behind in terms of producing both provincial or territorial and national health strategies. And there is certainly much work to be done to advance intersectionalityinformed examinations of women’s health. As long as “women’s health” is tackled without an intersectional lens, the diversity of women will remain undertheorized, and inequities will be perpetuated.

OVERVIEW OF THIS VOLUME The book is divided into four parts. In Part One (Conceptual Foundations), Hankivsky leads in chapter 1 with “Women’s Health in the Twenty-First Century,” which considers key issues and challenges related to how women’s health is conceptualized. Provocatively, Hankivsky suggests that an exclusive focus on women’s health or gender and health are limited in their ability to understand and respond to the complexities of health and health inequities in the twenty-first century. In chapter 2, “Overhauling Life Course Approaches to Women’s Health: Towards an Intersectional Approach,” Hankivsky and Etherington posit that life course approaches, properly conceptualized, are critical for understanding and responding to health inequities. They look at how life course frameworks for

Introduction

women’s health have evolved, with a specific focus on how to improve and strengthen intersectional approaches to inform strategies for advancing health equity across women’s life course. In Part Two (Historical Foundations), Morrow and Sethna set the stage in chapter 3 with an overview of the history of the women’s health movement. Using the ways in which women’s bodies (as sexed, gendered, racialized, and classed) have been conceptualized in Western intellectual history as a way of grounding the impetus for each activist wave of women’s health, they explore how feminists have worked to contest medicalization and the ways in which poverty, sexism, racism, ableism, and colonialism have impacted women’s health throughout history. They highlight the many activist strategies that have raised awareness about women’s health issues and supported women’s access to reproductive justice and access to specialized care. The next two chapters animate critically important histories and contemporary realities in women’s health related to the experiences of older immigrant women and abuse, and Indigenous women’s health. Guruge and Matsuoka, in “Elder Abuse as a Health Issue: Barriers Faced by Older Immigrant Women in Accessing Services” (­chapter 4), review the literature on the health of immigrant women with a focus on the impact of elder abuse. They recommend targeted strategies that use intersectional and social determinants of health frameworks for developing effective health promotion programs and policies. Allan and Smylie, in “All Our ­Relations: Indigenous Women’s Health in Canada” (chapter 5), foreground an Indigenous relationality and decolonizing lens in examining women’s health, theory, and policy, and demonstrate the key contributions of Indigenous women’s knowledge to health using the revitalization of Indigenous midwifery as an example. Following this in chapter 6, “Reproductive Politics: Reproductive Choice to Reproductive Justice,” McKenzie explores the limitations of a “pro-choice” position, illustrating how it delimits the conversation on reproductive rights and ignores the concerns that Indigenous, two-spirited, and transgender women, and women of colour bring through their lived experiences. McKenzie offers reproductive justice as a more compelling and inclusive framework for understanding intersecting forms of oppression as these are played out in the arena of reproduction. In Part Three (Methodological Foundations: Operationalizing Social Justice and Social Change), chapter 7, Varcoe and McKenzie in “Decolonizing Research,” explore the roots of decolonizing approaches to research and argue that these are needed to attend to the ways in which colonialism continues to shape the health and well-being of all, not just as a defining feature of the lives and health of Indigenous peoples; thus they consider decolonial approaches as essential to all intersectional research. In chapter 8, “From Gender Mainstreaming Toward Mainstreaming Intersectionality,” Hankivsky and Hunting expose the problematic ways in which intersectionality is being taken up, added into, and conflated with gender mainstreaming tools for policy and program development, and argue for an “intersectionality first” approach. In chapter 9, “Beyond Sex and Gender Difference in Funding and Reporting of Health Research,” Hankivsky, Springer, and Hunting systematically document the extent to which national health funding agencies and scholarly journals require attention to sex/gender, the conceptual explanations and guidance given for inclusion, and whether sex/gender is seen as inseparable from other social inequities. The authors provide recommendations that can be taken up to ensure that contemporary and intersectional understandings of gender are being used to advance excellence in health research. Morrow, Reid, Landry, Chatterjee, Frisby, Holmes, and Yap, in chapter 10, “Engaging Communities: Intersectional Feminist Participatory Action Research,” advance the concept of Intersectional Participatory Action Research (IPAR) as

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a research practice that explicitly adopts an intersectional theoretical framework that seeks to understand the complex and intersecting role of multiple oppressions and how these are structurally embedded in society. Mena and Bolt in Chapter 11, “Intersectionality-Based Quantitative Health Research and Sex/Gender Sensitivity: A Scoping Review, undertake a review and analysis of the literature on the use of intersectionality in quantitative studies to ascertain whether and how intersectionality is operationalized in the three distinct yet related health fields of diabetes, smoking, and physical activity. Finally, Part Four (Exemplifying Change (Health Policy and Practice)) offers 10 exemplars of intersectional scholarship that promise to transform the understanding of women’s health and cover diverse topics, such as the social determinants of injection drug use in the lives of sex workers, HIV, violence against women, transgender health and wellness, mental health and madness, migration and health, aging, and non-communicable diseases.

REFERENCES Anderson, J. M. (2004). Lessons from a postcolonial feminist perspective: Suffering and a path to health. Nursing Inquiry, 11(4), 238–246. https://doi.org/10.1111/j.1440-1800.2004.00231.x Australian Government Department of Health. (2018a). Establishing a national women’s health strategy, 2020–2030 (public consultation). https://consultations.health.gov.au/population-health-and-sport-division -1/establishing-a-national-womens-health-strategy/ Australian Government Department of Health. (2018b). Establishing a national men’s health strategy, 2020–2030 (public consultation). https://consultations.health.gov.au/population-health-and-sport-division-1/online -consultation-for-the-national-mens-health-s/ Australian Government of Health. (2019a). National women’s health strategy, 2020–2024. https://www.health .gov.au/resources/publications/national-womens-health-strategy-2020-2030 Australian Government Department of Health. (2019b). National men’s health strategy, 2020–2024. https:// www.health.gov.au/resources/publications/national-mens-health-strategy-2020-2030 British Columbia Centre of Excellence for Women’s Health & BC Women’s Hospital and Health Centre. (2008). Report on the women’s health strategy for 2004–2008: Further advancing the health of girls and women. British Columbia Centre of Excellence for Women’s Health. http://www.bcwomens.ca/healthinfo-site /Documents/Further-Advancing-the-Health-of-Girls-and-Women.pdf. Bryant, T., & Raphael, D. (2018). Intersectionality analysis, the welfare state and women’s health. Women’s Health & Urban Life: An International and Interdisciplinary Journal, 13(2), 3–17. https://ojs.scholarsportal. info/ontariotechu/index.php/cs/issue/download/13_2/36 Canadian Institutes of Health Research. (2009). Institute of gender and health strategic plan, 2009–2012. https://cihr-irsc.gc.ca/e/38770 Government of Canada. (2017). Gender equality: A foundation for peace. Canada’s national action plan 2017– 2022 for the implementation of the UN Security Council Resolution on women, peace and security. https:// www.international.gc.ca/world-monde/assets/pdfs/cnap-eng.pdf Hankivsky, O., & Cormier, R. (2009). Intersectionality: Moving women’s health research and policy forward. Women’s Health Research Network. Hankivsky, O., Reid, C., Cormier, R., Varcoe, C., Clark, N., Benoit, C., & Brotman, S. (2010). Exploring the promises of intersectionality for advancing women’s health research. International Journal for Equity in Health, 9, 5. https://doi.org/10.1186/1475-9276-9-5 Hankivsky, O. (Ed.). (2011) Health inequities in Canada: Intersectional frameworks and practices. University of British Columbia Press.

Introduction Hankivsky, O. (2012). Women’s health, men’s health, and gender and health: Implications of intersectionality. Social Science & Medicine, 74(11), 1712–1720. https://doi.org/10.1016/j.socscimed.2011.11.029 Johnson, J. L., Greaves, L., & Repta, R. (2007). Better science with sex and gender: A primer for health research. Women’s Health Research Network. Manitoba Health. (2011). Manitoba’s women’s health strategy. Marwah, S. (2014). Refugee health care cuts in Canada system level costs, risks and responses. Wellesley Institute. McKenzie, H. A. (2019). Indigenous women’s reproductive (in)justice(s) and self-determination: Envisioning futures through a collaborative action-based research project [Doctoral dissertation, University of British Columbia]. UBC Open Collection, http://hdl.handle.net/2429/73316 McKenzie, H. A., Varcoe, C., Browne, A. J., & Day, L. (2016). Disrupting the continuities among residential schools, the “sixties scoop” and child welfare: An analysis of colonial and neocolonial discourses, policies and practices and strategies for change. International Indigenous Policy Journal, 7(2), 1–24. https://doi.org /10.18584/iipj.2016.7.2.4 Morrow, M., Hankivsky, O., & Varcoe, C. (Eds.). (2007). Women’s health in Canada: Critical perspectives on theory and policy. University of Toronto Press. Morrow, M., & Halinka Malcoe, L. (Eds.). (2017). Critical inquiries for social justice in mental health. University of Toronto Press. National Inquiry into Missing and Murdered Indigenous Women and Girls. (2019). Reclaiming power and place: The final report of the National Inquiry into Missing and Murdered Indigenous Women and Girls (Vol. 1a). Privy Council Office. https://www.mmiwg-ffada.ca/wp-content/uploads/2019/06/Final_Report _Vol_1a.pdf Norton, R., Peters, S., Vivekananad, J. H. A., Kennedy, S., & Woodward, M. (2016). Women’s health: A new global agenda. Oxford Martin School at the University of Oxford; George Institute for Global Health. Oliffe, J., & Greaves, L. (2012) Designing and conducting gender, sex, & health research. Sage. Ontario Government. (2011). Improving women’s health in Ontario: Sharing the legacy, supporting future action 2009–2012. ECHO. Pederson, A., Haworth-Brockman, M. J., Clow, B., Isfeld, H., & Liwander, A. (2013). Rethinking women and healthy living in Canada. British Columbia Centre of Excellence for Women’s Health. Scottish Government. (2021). Women’s health plan: A plan for 2021–2024. https://www.gov.scot/publications /womens-health-plan/documents/ Springer, K. W., Hankivsky, O., & Bates, L. M. (2012). Gender and health: relational, intersectional, and biosocial approaches. Social Science & Medicine (1982), 74(11), 1661. https://doi.org/10.1016/j.socscimed .2012.03.001 Women and Gender Equality Canada. (2020). 2020–21 Department plan. https://women-gender-equality .canada.ca/en/transparency/departmental-plans/2021-2022/dp-pm-en.pdf World Health Organization. (2016). European region strategy on women’s health and well-being in the WHO. World Health Organization. (2018). Strategy on the health and well-being of men in the WHO European region. Truth and Reconciliation Commission of Canada. (2015). Honouring the truth, reconciling for the future: summary of the final report. Vander Wier, M. (2019). Gender affirmation coverage a win for diversity: Experts Extended health benefits support transitioning workers. Canadian HR Reporter. https://www.hrreporter.com/compensation-and -benefits/39931-gender-affirmation-coverage-a-win-for-diversity-experts/

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CHAPTER ONE

Women’s Health in the Twenty-First Century Olena Hankivsky

The field of women’s health has been developing over several decades and has progressed through what Varcoe et al. (2007) described as four overlapping trends: challenging the gender neutrality of research, policy, and practices; disrupting the linkage between women’s health and reproductive functioning; developing sex and gender analyses; and developing intersectional analyses. Today’s approach to women’s health research includes a number of identified priorities. These include women’s health across the lifespan; illnesses and diseases that most affect women globally, namely non-communicable diseases (NCDs); universal health coverage; the biological, behavioural, or other factors that result in health disparities; personalized medicine; translation research; implementation science; climate change; and most recently COVID-19 (Alexander et al., 2020; Etienne, 2015; Langer et al., 2015; Lee et al., 2021; Mobasheri, 2021; National Academies of Sciences, Engineering, and Medicine, 2016; Norton, 2016; Peters et al., 2016; Pinn, 2018; Sorensen et al., 2018; World Health Organization [WHO], 2018). At the same time, the women’s health agenda is being referred to as unfinished (Ghebreyesus et al., 2020). Calls have been made to innovate how women’s health is conceptualized (El-Noush et al., 2015; Every Woman Every Child [EWEC], 2015; Hankivsky, 2012; Geller et al., 2013; Greaves, 2015; Temmerman et al., 2015; Women’s Health Innovation Coalition, 2020) and to craft new conceptual tools, methods and approaches to capture the complexity of women’s health (Annandale, 2013; Hall, 2021; Institute of Medicine [IOM], 2010; Macedonia et al., 2017; Mastroianni & Henry, 2020; Pederson et al., 2014; George Institute for Global Health India, 2016). For example, Mobasheri (2021) has argued that the current pandemic is disrupting the ongoing efforts to improve women’s health and highlighting the need for a revised global women’s health agenda in the COVID-19 era. Such calls, however, contain some irreconcilable tensions. For example, the need for more attention to sex and gender in research, scientific reporting, and policy priorities is consistently emphasized (e.g., Canadian Institutes of Health Research-Institute of Gender and Health [CIHR-IGH], 2018, 2019; Davidson et al., 2016; Gahagan & Bryson, 2021; Heidari et al., 2016; IOM, 2010; National Institute of Health, 2016; Spagnolo et al., 2020; Tannenbaum et al. 2021; WHO, 2018).

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Simultaneously, there is acknowledgment that systematic attention is required to the broader range of social and environmental factors and structures beyond sex and gender that affect women’s health and the differences that these create among women (Ghebreyesus et al., 2020; Hankivsky et al., 2017; Hankivsky et al., 2018; Montesanti, 2015; Sarto et al., 2013; ­Vardeman-Winter, 2017). The harms of gender-exclusive language in women’s health, which creates norms and priorities around cisgender women’s experiences, and the needs of transgender and gender non-binary persons are also being recognized (Mosesen et al., 2020). Arguably, women’s health has been and continues to be at a crossroads. The objective of this chapter is to consider key issues and challenges in terms of how women’s health is conceptualized at this important juncture. This includes a brief discussion of the relationship between women’s health, men’s health, and gender and health, which are inextricably linked. The bulk of the analysis focuses, however, on the state of art in conceptualizing women’s health (and for that matter, men’s health and gender and health). At present, three dominant but often contradictory framings are used by researchers and policymakers in the field: some continue to focus exclusively on sex and gender; others explore, without losing a separate foci on sex and gender, how social and environmental contexts shape these variables and locations; and some have gone further to examine alternative frameworks, such as intersectionality, in which to situate sex and gender. Despite acknowledgments of differences and diversity among women, however, most existing approaches are still quite fixed in prioritizing sex and gender, and this chapter discusses the limitations and challenges of such framings. The chapter puts forward the argument that if researchers, policy actors, and health care professionals are serious about advancing productive approaches towards comprehensive understandings and satisfactory responses to the complexities of human lives, the categorization of health inequities within a distinct and coherent field of women’s health may need to be rethought. The examination ends with a provocative proposition that this author has alluded to previously (Hankivsky, 2012) – that a sustained focus on women’s health (or for that matter, men’s health or gender and health) may be fundamentally limiting and limited for tackling the complexities of health and health inequities in the twenty-first century. Rather, what is required are further innovations informed by an intersectionality framework that can assist researchers, policymakers, and activists to better understand differential effects of illness, disease, and health experiences that transcend categorizations of “women” or “men.” Such an approach captures the nuances and significance of within group differences and similarities – across the life course and in relation to different illnesses and diseases – that cut across intersecting social locations, such as gender, race/ethnicity, socio-economic status, geographic location, disability, and sexuality, in the context of broader structures and barriers to health.

Women’s Health, Men’s Health, and Gender and Health In comparison to women’s health, which developed in parallel to the second wave of the women’s movement (Clow et al., 2009; Morrow, 2007; see also Morrow and Sethna, chapter 3, this volume) and is now well established internationally and with work at the levels of policy, planning, and research, the men’s health field is in its nascent stages. At the same time, men’s health has made

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considerable progress moving from the margins to the centre of health discourse, especially in the last decade (Baker, 2015, 2020; Betron et al., 2020; Giorgianni et al., 2013; Hearn, 2015; Richardson et al., 2019; Shabsigh, 2013; The Lancet, 2019). Today, research in the field is burgeoning. Men’s health is also of increasing interest and concern to health policymakers and practitioners. The WHO European Region (WHO-EURO) published a men’s health strategy for its 53 member states in 2018. Brazil (2014), Australia (2020), and Ireland (2016) have developed national men’s health policies to highlight the need for a specific focus on men as service users with particular requirements and for improving the health of all males. The growth of men’s health challenges firmly entrenched notions that gender disadvantage in health affects only or primarily women. Despite their different historic contexts and trajectories, women’s health and men’s health share a number of similarities. Both fields draw on epidemiological data to underscore sex-based differences, and each uses gender-based research to highlight the unique life experiences, concomitant health care needs, and morbidity and mortality outcomes of women and men, respectively. As one example, each field rationalizes itself by drawing on mortality and morbidity data. Epidemiological evidence is used by proponents of women’s health and men’s health to highlight different sides of the gender and health paradox – women’s health proponents emphasize that women live longer than men but have higher morbidity rates while men’s health proponents underscore the shorter life expectancy of men (Global Action on Men’s Health [GAMH], 2017a; Luy & Minagawa, 2014). Additionally, the two fields highlight the implications for men and women of different behaviours, social roles, gender norms, and responsibilities, although men’s health often focuses on individual and high-risk behaviours linked to traditional masculinity that undermine health, and women’s health has concerned itself with the lived experiences of women and how their social positioning affects health experiences, interactions with the health care system, and health outcomes (Daniel et al., 2018; Darmstadt et al., 2019; Edwards et al., 2013; Gupta et al., 2019; Heise et al., 2019; Levant & Wimer, 2014; MacDonald, 2016). A focused interest in women’s health has also been justified on the grounds that women come into contact more with the health care system, have been under-researched in clinical trials, face different and distinct health risks and outcomes, are prescribed the most medication, provide more health care for their families and close relations, and continue to have unmet health needs and unequal access to resources (Allotey & Remme, 2020; Langer et al., 2015; Pinn, 2013; WHO Europe, 2016b; Women’s Health Action, 2014). Importantly, however, revelations of gendered inequities in health experiences and access to and use of health services for men (Esmailzade et al., 2016; Griffith, 2020; Holden et al., 2012; James et al., 2012) have challenged common assumptions within the women’s health field that health care systems fail only women. Approaches to health in which men and women have in the past often been compartmentalized into opposing categories can create competition for research, policy attention, public sympathy, and concomitant financial resources (Annandale, 2009; Gatrell, 2011; Hankivsky, 2012; LagroJanssen, 2007; Oliffe et al., 2010). For example, reflecting on the developments in Australia, Broom and Tovey (2009) wrote that because men’s health initially emerged from a complaint based on discrimination against men, the relationship between the two constituencies was poisoned and continues to be adversarial. It has cemented in place “a language of competitive victimization on which to base claims for funds, positioning the sexes in a notional hierarchy of suffering” (p. 270). This type of “competitive victims discourse” (Connell, 2000, p. 65) can impede investigations of

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relational interconnections, such as the effects of “men’s health behaviour and situations on the health of women and vice versa” (Varanka, 2008, p. 190). In addition, despite the fact that there is growing awareness to the contrary, women’s and men’s health fields often fall prey to promoting the idea that men and women are homogenous and contrasting social groups. Such drawbacks have no doubt opened the door to the emergence and growing popularity of gender and health. The gender and health field developed as both an outgrowth of women’s health and an area of research that is able to bridge the concerns of women’s and men’s health researchers. The field has also evolved through efforts to bring it more in line with the developments within gender theory that promote the interrogation of gender constructions and power within the interdependent gender relations that shape and determine differential health outcomes (Annandale, 2013; Hammarström et al., 2014; Springer et al., 2012). Thus, gender and health is thought to be broader and more encompassing than either the women’s or the men’s health field in that it prioritizes a focus on the wide-ranging differences and gender relationships within and between both men’s and women’s health with a view of advancing gender equality, which is seen widely as a necessary foundation for healthier future generations (e.g., Baker, 2020; Roseboom, 2020). Accordingly, gendered approaches to health research and policy are thought to have a number of distinct advantages and strengths. To begin, a “gender as relational” approach is seen as able to reduce the competition and tensions that are often present between women’s and men’s health and thus allow for the exploration of their intersections for the benefit of all in society (Springer et al., 2012). In the words of Annandale (2010): “The more inclusive approach to gender and health encourages us to question assumptions that particular health problems belong to either men (e.g., heart disease, workplace stress) or to women (e.g., postnatal depression, anorexia and other weight problems)” (p. 99). At the level of policy, this is exemplified by the use of gender mainstreaming, an internationally recognized strategy established in 1995 by the UN as part of the Beijing Platform for Action for integrating women’s and men’s concerns into the development, implementation, and evaluation of policies and programs. More than 25 years later, mainstreaming gender into women’s health programming and policies continues to be called for at global and national levels (Bustreo et al., 2021; Gupta et al., 2020). In Canada, it is evidenced by the establishment of the Institute of Gender and Health (IGH), within the Canadian Institutes of Health Research (CIHR), the first and only research funding organization of its kind internationally. Also important are initiatives such as the Gendered Innovations Project, an international collaboration to provide scientists and engineers with practical methods for sex and gender analysis (Gendered Innovations, 2011), and the European-based GENDER-NET Plus, which advances gender mainstreaming and sex and gender analyses within transnational research projects.

The Growing Focus on Diversity As the field of women’s health has evolved, more and more attention has been paid to the challenge of diversity. In 2021, the WHO called for concrete action to ensure women and girls in all their diversity can enjoy the right to health. In Australia, the National Women’s Health

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Strategy 2020–2030 (Australia, Department of Health, 2018) takes a broad inclusive approach to the topic of “women’s” health, recognizing that individuals may identify and be recognized within the community as a gender other than the sex they were assigned at birth or as a gender that is not exclusively male or female, and that there is diversity in bodies, sex characteristics, sexualities, and gender identities (p. 16). The New South Wales Women’s Health Framework (New South Wales Ministry of Health, 2019) recognized a need to focus efforts “to support some women and girls who are more likely to have additional health and wellbeing vulnerabilities” (p. 12). The framework identifies priority populations as including women and girls who are Aboriginal, culturally and linguistically diverse, socio-economically disadvantaged, living with a disability, carers for other people, living in rural and remote areas, and lesbian, bisexual, transgender, intersex, and queer. In addition, the Government of Western Australia Department of Health’s (2017) Women’s Health Strategy, 2018–2023 highlighted that achieving health equity between and among women and men requires tailored solutions that respond to the diversity of Western Australia’s population. And in A Case for a National Women’s Health Strategy in Aotearoa New Zealand by Women’s Health Action (2014), the statement was made that “health policy must be designed to meet the needs of women of all ages and backgrounds and take into account the diversity of cultural and ethnic backgrounds and be culturally and linguistically appropriate” (p. 7). Similarly, within the men’s health field, questions have been asked about the usefulness of men’s health, especially in relation to broader determinants of health (Griffith, 2012; Smith, 2007) and the perpetuation of essentialist notions of masculinity (Douglas et al., 2013; Galdas et al., 2010; MacDonald, 2016; Smith et al., 2009; Wilkind & Savoye, 2009). The real challenge to embrace the diversity within the category of “men” and the breadth and diversity of health issues that pertain to different sub-populations of men has been recognized (Baker, 2020; Bowleg, 2013; Garfield et al., 2013; Griffith, 2016, 2020; Springer & Mouzon, 2011; Vandello et al., 2019). As the Australian National Men’s Health Strategy (2020–2030) acknowledges: “Australian males are diverse in age, social and economic circumstances, culture, language, education, beliefs and a range of other factors that influence health behaviours and outcomes, exposure to risk factors and access to health care. These factors, as well as biological differences, mean that the health experiences of males can be quite different to females and some groups of males experience poorer health than others.” And as Hankivsky (2012) argued elsewhere, proponents of gender and health claim that the field is responsive to the challenge of diversity. This is exemplified in the growing acceptance of the fluid and flexible nature of sex and gender (especially in relation to transgender or gender-fluid or non-binary individuals), acknowledgment of the multiplicity of women and men, and the recognition that sex and gender are shaped by and in constant interaction with other determinants of health (Annandale, 2021; Benoit & Shumka, 2009; Fausto-Sterling, 2012; Hawkes et al.; 2020; Levy et al., 2020; Morgan et al., 2016; Restar et al., 2021; Schiebinger, 2021; Springer et al., 2012; WHO, 2015). Regardless of the strides that have been made to explicitly acknowledge and address diversity, the prioritization of sex and gender, and often rigid notions of sex and gender, continues to dominate. Arguably, the field of women’s health – as well as men’s health and gender and health – have not come to terms fully with the internal inconsistencies and resulting limitations linked to such practice, which are outlined below.

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The Limitations of Centring Gender and Sex First – and this is perhaps quite well rehearsed in the literature – is the practice of conflating gender with women (Annandale, 2013; Baker et al., 2014; Hankivsky, 2012; Richardson & Carroll, 2009; Wanner & Wadham, 2015; Wilkins & Savoye, 2009). Often, this then translates into women’s needs and health being elevated as a special area of pressing importance and priority for society more generally, which overshadows other groups. For example, the landmark US IOM (2010) report Women’s Health Research: Progress, Pitfalls, and Promise concluded that “the considerable investment in women’s health research of the past two decades has yielded much to improve the health and well-being of women in the U.S. Despite the important investment, much work remains in all aspects of research. Given the multiple and significant roles women play in our society, maintaining support for women’s health research and enhancing its impact are not only in the interest of women, they are in the interest of us all” (p. 4). Historically and contemporarily, maintaining support resulted in an over-focus on reproductive and sexual health and issues of violence against women (Baker, 2016; Peters et al., 2016), to the exclusion of other health concerns for both women and people of all genders. More recently, this tendency towards conflation is also reflected in the UN’s (n.s.) Sustainable Development Goals where Goal 5 makes an explicit commitment to gender equality and to the empowerment of all women and girls. This goal covers a number of targets, such as discriminatory laws; harmful practices, such as child/early/forced marriage and genital mutilation; violence against women and girls; sexual and reproductive health; reproductive rights; recognition of unpaid and domestic care work; equal access to economic resources; and women’s participation in full and effective leadership and decision making. The focus here is on women and girls to the exclusion of men and boys (Kim, 2017; Koehler, 2016; Rosche, 2016). Some changes in foci are, however, emerging. In 2003, the Movember Foundation, a multinational charity that raises awareness around men’s health, was founded. As highlighted above, some countries have developed national policies centred on men’s health, with explicit attention to differences among men. In 2014, the CIHR-IGH launched a five-year funding initiative in boys’ and men’s health in response to increasing interest in health disparities among men and boys, as well as calls for action to improve their health (CIHR-IGH, 2016). In addition to these national strategies, 2013 saw the establishment of a major international public health initiative called Global Action on Men’s Health (GAMH). This international network of men’s health organizations is focused on ensuring that global health organizations and national governments address the health and well-being needs of men and boys; health practitioners take greater account of the specific needs of men and boys in service delivery, health promotion, and clinical practice; and sustained multidisciplinary research into the health of men and boys continues (GAMH, 2017b). In 2018, WHO Europe developed a Strategy on the health and well-being of men in the WHO European Region. Nevertheless, gender disparities experienced by men are not always fully addressed in existing health policies and programs (Baker, 2020; Baker & Shand, 2017; Hawkes & Buse, 2013; The Lancet, 2019). Second, the emphasis placed on sex and gender is often motivated by arguments about why these are such important variables, the lack of attention to these variables (CIHR-IGH, 2018; European Commission, 2013; Gausman & Langer, 2020; Geller et al., 2013; Gochfeld, 2010; Johnson et al., 2007; Mauvais-Jarvis et al., 2020; Nieuwenhoven & Klinge, 2010), and a lack of clarity about

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sex and gender and the relationship between sex and gender in health research (Hankivsky, 2007; Klinge, 2008; Pinn, 2013; Springer et al., 2012). In Canada, the CIHR-IGH, established in 2000, has consistently fostered research that explores how sex and gender influence health. For example, in the most recent strategic plan – Science Is Better with Sex and Gender: Strategic Plan, 2018–2023 – the CIHR-IGH (2018) emphasized the following: Sex and gender shape us inside and out – influencing everything from our biology to our behaviour. From the washrooms we use and the clothes we wear to the boxes we check on a form at the doctor’s

office. Sex and gender permeate our lives, while being difficult to recognize and define. Putting simple

boxes around the complex and interconnected concepts of sex and gender is not easy; however, doing so can help researchers apply the two concepts consistently and distinguish between the many different ways in which sex and gender shape our lives – including our health. (p. 6)

According to the CIHR-IGH (2018), “Every cell is sexed and every person is gendered,” and, moreover, “the more we understand about how sex and gender affect health, the more we can improve health and well-being for everyone” (p. 3). For more than a decade now, the focus on understanding sex- and gender-based similarities and differences between men and women has become more firmly rooted in health research design and policy, promoting the acceptance of women and men as important populations for examination. In addition, Sex and Gender Equity in Research (SAGER) guidelines have been developed by the European Association of Science Editors’ Gender Policy Committee to support comprehensive reporting of sex and gender information within research processes, from study design to interpretation of findings (Heidari et al., 2016). National-level health research funding agencies have also increasingly required considerations of sex and gender (Hankivsky et al., 2018; Johnson et al., 2014; see Hankivsky et al., chapter 9, this volume). Since the outbreak of COVID-19, the call for governments and global health institutions to consider sex and gender have increased (e.g., European Commission, 2020; Gausman & Langer, 2020; Spagnolo et al., 2020; “The Gendered Dimensions,” 2020; Walter & McGregor, 2020; Wenham et al., 2020). Such emphasis often leads to focusing on broadly defined sex and gender differences between women and men. Consequently, there is a long body of work that reviews sex-based and gender differences right up to the COVID-19 crisis (Bird & Rieker, 2008; Brittle & Bird, 2007; Gebhard et al., 2020; Gochfeld, 2010; Matud, 2017; Mosca et al., 2011; Oksuzyan et al., 2008; Racine et al., 2012; Read & Gorman, 2010; Rosenfield & Mouzon, 2013; Walter et al., 2020), and many tend to present, in a fairly static fashion, how these differences contribute to health risks, distinct behaviours, access to and use of services, and outcomes between women and men. Shield’s (2008) observation, made 10 years ago, was that the question of “in what ways do women and men differ?” (p. 303) never seems to go away. Linked to this are strong messages that better science will be produced by using the particular lens of a sex and gender analysis. As Geller et al. (2013) argued elsewhere, “Accounting for sex and gender differences in health research not only provides new knowledge, it improves the questions we ask and answer, advances our research approaches, and increases the usefulness of the insights gained” (p. 5). Centring sex and gender conceptually and analytically, however, also tends to reinforce binary comparisons between men and women. Annandale (2013) has argued that there is a need to keep

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gender binaries in our theoretical toolkit because they retain significant meaning in both medical and popular thinking. This position reflects a fairly wide perception among researchers and other key stakeholders of the pragmatism and political expedience of staying within an analytic framework that focuses on sex and gender differences between men and women. Such a position has been especially prevalent in responses to COVID-19, as evidenced by a recent Lancet commentary arguing that “recognising the extent to which disease outbreaks affect women and men differently is a fundamental step to understanding the primary and secondary effects of a health emergency on different individuals and communities, and for creating effective, equitable policies and interventions” (Wenham et al., 2020, p. 846). In the Canadian context, there is some indication of a loosening of sex and gender binary thinking. To illustrate, within its 2018–23 strategic plan, the CIHR-IGH (2018) explicitly notes “variation in the biological attributes that comprise sex and how those attributes are expressed,” and acknowledges “considerable diversity in how individuals and groups understand, experience and express gender through the roles they take on, the expectations placed on them, relations with others and the complex ways that gender is institutionalized in society” (p. 6). Moreover, there is a recognition of gender diverse people and a statement that “research organizations are increasingly aware that good science must not only account for sex and gender but must do so in a way that is transgender- (trans-) inclusive” (CIHR-IGH, 2018, p. 19). However, there is little indication, in the actual goals of the strategic plan – integration, innovation, and impact – of any accounting for non-traditional sex and gender expressions. So, despite the acknowledgement of needing to be trans-inclusive, a tendency towards gender binaries continues and, as in previous IGH strategies, “the specific experiences of non-binary people have yet to be fully integrated [emphasis added] into these efforts” (Frohard-Dourlent et al., 2017, p. 4). This lack of follow-through demonstrates the inertia in moving beyond two definable sexes and genders (despite the existence of intersex and transgender persons) to destabilize the primacy of sex and gender in research and policy (Hankivsky, 2012) or to make space for integrating the theoretical shifts regarding understandings of sex and gender as fluid and dynamic. Third, while there is movement in all the fields to incorporate other variables in addition to sex and gender, because of habit, ease of analysis, or ideological or political agendas, prominence continues to be assigned to gender or sex. This generates a type of additive approach, relegating other factors and variables to being secondary in importance (if at all) and not necessarily mutually interdependent and interactive in relation to sex and gender (Hankivsky, 2012; Hankivsky et al., 2010). In Canada, the focus on women’s health can be observed in the kinds of policies and tools that have been developed over the years to capture differences and similarities between women and men. Initially, the dominant approach was sex- and gender-based analysis (SGBA). While recognizing variation among women and men, as well as between them (Clow et al., 2009; Cooke et al., 2017; McCarthy et al., 2016), the framing questions of SGBA assumed the influence of sex and gender, and promoted questions about similarities and differences among women and men, such as: “Do women and men have the same susceptibility to lung disease from smoking? Are women at the same risk as men of contracting HIV/AIDS through heterosexual intercourse? Are the symptoms of heart disease the same in women and men?” (Clow et al., 2009, p. 1). In 2018, the CIHR-IGH formally announced the promotion of SGBA+ (sex- and gender-based analysis plus) in health research. According to the CIHR-IGH (2018), the “SGBA+ policy aligns

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with the Government of Canada’s commitment to the integration of sex and gender throughout its policies and programs –including the way government-funded research is conducted. The plus in SGBA+ points to the many other factors that can intersect with sex and gender to influence health” (p. 5). The CIHR-IGH (2018) Strategic Plan, 2018–2023 emphasized that “our strategic plan places sex and gender science at the heart of experimental design, measurement, analysis, reporting and implementation” (p. 5), but with the exception of one priority action under the “Impact” goal – “promote the evidence-based integration of sex, gender and intersectional factors into health related policies and programs” (p. 29) – there is no indication of any systematic integration of SGBA+ within the institute’s strategic activities. Consequently, even the most evolved and diversity-sensitive approaches – whether in women’s health, men’s health, or gender and health – “inadvertently mask the real and complex interplay of other intersecting factors that shape and determine health outcomes” (Hankivsky, 2012, p. 1715) because the assumed primacy of sex and gender has not been adequately interrogated or challenged (Hankivsky, 2021). Not surprisingly, intersectionality has taken hold in the last decade, opening up new spaces for innovative understandings of the intersecting factors in women’s health research and in policy and policy analysis innovation. These understandings, advanced by an intersectionality perspective, have profound implications for the future of women’s health.

Intersectionality-Informed Developments and Challenges for Women’s Health Within health literature, definitions of intersectionality vary. In general, Intersectionality promotes an understanding of human beings as shaped by the interaction of different

social locations (e.g., “race”/ethnicity, Indigeneity, gender, class, sexuality, geography, age, disability/

ability, migration status, religion). These interactions occur within a context of connected systems and

structures of power (e.g., laws, policies, state governments and other political and economic unions, religious institutions, media). Through such processes, interdependent forms of privilege and oppression shaped by colonialism, imperialism, racism, homophobia, ableism and patriarchy are created and maintained. (Hankivsky, 2014, p. 2)

Attention to intersectionality can be observed in a number of high-level national documents. In Canada, the CIHR-IGH (2018) noted, for example, While it is important to clearly distinguish between sex and gender, we also need to understand the dynamic relationship between these and other factors that influence health and well-being. Inter-

sectional factors – like income, social status and supports, Indigeneity, sexual orientation, education, employment, ability, ethnicity, social and physical environments, geographical location, genetics and

personal health practices – contribute to varied experiences and outcomes for men, women, girls, boys and gender-diverse people. (p. 6)

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Another progressive example can be found in the Netherlands Organisation for Health Research and Development (Gender and Health Alliance’s Research Working Group, 2015) report, Gender and Health Knowledge Agenda. The report underscored the dynamic and co-constitutive nature of factors and forces that shape individual and group health differentially: There are in fact sub-categories of sub-categories. The many distinctions that can be drawn (malefemale, homo-hetero, high-low socioeconomic status) can also be regarded as continuums rather than divisions. All these factors can also be mutually influencing. An intersectional approach is based on continuums that can have an impact on each other. (p. 9)

This report highlights that research must move beyond assumedly fixed or dichotomous categories (i.e., looking at differences between men and women) and towards reflecting “the variation in the significance and health effects of sex/gender categories within differences in ethnicity, age, class, sexual preference” (p. 90). Similarly, in Priorities for Victorian Women’s Health, 2015–2019 (Victorian Women’s Health Services, 2015), the following argument was made: Gender-based stratification intersects with other deep and underlying structural mechanisms, such as racial privileging or hetero-normativity. Thus, the distribution of power, prestige and resources is not only unequal between women and men but within women as a group, with some women experiencing the effects of compounded inequities because of their positioning through multiple axes of social stratification and systemic hierarchies. (p. 15)

Further, in the WHO Europe (2016b) women’s health strategy, there was specific recognition that Women are not a homogeneous group. Their health opportunities and risks vary according to social, economic, environmental and cultural influences throughout their lifetime. Consideration must be given to how gender intersects with other axes of social inequalities, such as ethnicity and place of

residence, and the unequal distribution of social determinants of health such as income, education and employment. The effects on women’s vulnerability to ill health from specific processes, such as social

exclusion and discrimination, climate change, conflict situations, humanitarian crises, economic crises and responses, migration and human trafficking, should also be assessed. (p. 5)

In the field of women’s health, a number of intersectionality-informed interventions have been made. One of the first was Intersectionality: Moving Women’s Health Research and Policy Forward (Hankivsky & Cormier, 2009). The purpose of this primer is to explore how health researchers, policy analysts, program and service managers, decision makers, and academics can effectively apply an intersectional perspective in their day-to-day work. The authors claimed that for those working in the area of women’s health, intersectionality can be used for studying, understanding, and responding to the ways in which sex and gender intersect with other variables and how these intersections contribute to unique experiences of health. The goal of the primer is to demonstrate how intersectionality can change the way in which women’s health is framed.

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In 2010, drawing on emerging intersectionality research in the Canadian women’s health context, Hankivsky et al. (2010) explored the promises and practical challenges of the processes involved in applying an intersectionality paradigm. The case studies highlighted in this publication were intended to show important shifts in the women’s health field, demonstrating the potential of intersectionality for examining the social context of women’s lives, developing methods that elucidate power, and creating new knowledges that can inform appropriate action to bring about positive social change. Simultaneously, the authors of this 2010 publication suggested that intersectionality may, in fact, “challenge the utility of examining health experiences within the category or field of women’s health and instead to move towards fields of examination that capture the true complexities of people’s lives that include but are not limited to gender” (p. 12). This line of thinking has continued. In 2012, Hankivsky explicitly questioned the utility of women’s health as a category (as well as men’s health and gender and health) because of the primacy it gives to sex and gender and the implications this focus has for distorting the reality of complex lives and for impeding the advancement of understanding and responding to the challenges of diversity. There is growing evidence to support this line of argument. At the very basic level, the significant variation in male/female comparative mortality rates between one country and another are now well documented. For example, female life expectancy at birth exceeds male life expectancy in Russia by approximately 11 years whereas in the Netherlands the difference is less than 4 years (Organisation for Economic Co-operation and Development, 2017). Moreover, the often-cited life-expectancy (LE) gap in mortality between females and males seems to be narrowing in many countries. For example, in Scotland, the difference between males and females in LE at birth was 6.2 years in 1981–3, falling to 4 years in 2013–15 (National Records of Scotland, 2016). Males are catching up with females in terms of LE in Scotland. Overall, the gap in LE at birth between boys and girls in the UK has narrowed from 6 years in 1980–2 to 3.7 years in 2013–15 (Office for National Statistics, 2016). A recent study of LE in industrialized nations predicts that the gender gap for LE will likely shrink by 2030 in 34 of the 35 countries under study (Kontis et al., 2017). Similar trends can be found in New Zealand (Statistics New Zealand, 2015), Canada (Statistics Canada, 2014), and Ireland (Central Statistics Office, 2015). Baker et al. (2014) reported that in low- and middle-income countries, male life expectancy will be seven years shorter than female life expectancy by 2030. Essentially, such data point to the importance of the multiple dimensions of human lives and raises the question of whether using single, often homogenous categories, such as “women,” even makes sense when discussing fundamental health inequities, such as mortality differences. Those framing research and policy by using an intersectionality framework are seriously interrogating its relationship to sex and gender across various areas of research and policy. For example, in 2012, Greaves raised the important question “What influence do intersectional-type analyses have on the way sex and gender are integrated into health research?” (p. 12). Since then, an explosion of research has demonstrated the extent to which intersectionality influences understandings of sex and gender and, similarly, of difference and diversity in relation to health more broadly (e.g., Batur & Feagin, 2018; Bauer, 2019; Etherington, 2015; Fore, & Parra-Medina, 2018; Hankivsky, 2021; Hankivsky et al., 2017; Hankivsky & Jordan-Zachery, 2018; Hankivsky et al., 2018; Homan et al., 2021; Mena et al, 2019; Morrow & Malcoe, 2017; Plank-Bazinet et al., 2016; Sen & Iyer, 2012; Serrant, 2020; Weber et al., 2018).

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For example, studies have shown the very diverse needs and experiences of women who use substances and that similarities between women and men who use substances – in terms of their life problems and vulnerabilities – often outweigh gender-related differences. Such findings have led to questioning, for instance, the perceived universal tendencies of women-centred health interventions (Neal et al., 2018). Comparing poorer health outcomes related to breast cancer, diabetes, HIV/AIDS, and heart disease among Black women, as compared to their white counterparts, in the United States, Mwangi and Constance-Huggins (2017) critiqued approaches focused on gender for “masking the unique experiences of various women based on other social categories” (p.1) and called for intersectionality as the desired approach for health research and practice. Further, Hankivsky et al. (2018) produced evidence to show how funding agencies and scientific journals, which are key to guiding the production and dissemination of research, are not fulfilling their potential as change agents in terms of reflecting and advancing the most accurate understandings of interlocking inequities and dimensions, which are informed by intersectionality. Most recently, Hankivsky and Kapilashrami (2020) have illustrated why simply prioritizing women and building in a sex-and-gender focus won’t paint the full picture of COVID-19’s impact or provide us with enough information to fully address it: When only impacts on “women” or “men” are considered, there is a risk of homogenizing otherwise diverse experiences and reducing analysis to the simplistic messaging that “pandemics affect women

and men differently.” A narrow gender focus can reinforce binary and competing understandings of the

burden posed by COVID-19 on women versus men. An analysis of COVID-19 reduced to sex and gender differences can exclude or not adequately account for critical factors such as age, geography, dis-

ability, race/ethnicity and Indigeneity, migration/refugee status, class, and other structural conditions, including precarious housing, employment, and political and environmental stressors. (p. 1)

So, while the salience of the raison d’être of a women’s (and men’s) health field persists, it is increasingly questionable. Indeed, “inherent in the concept of women’s health is the paradoxical challenge that differences among women are often greater than the differences between women and their implied binary opposite, men” (Varcoe et al., 2007, p. 12). Most importantly, the diversity of women, in the way intersectionality reveals, poses special problems for women’s health because it challenges the political strategy that has been used for generating change: the foregrounding of inequities based on sex and gender (Hankivsky et al., 2010; Ironstone-Catterall et al., 1998). On this point, Weber et al. (2018) suggested a progressive way forward. They argued that transformation of existing health inequities can be achieved only through coalitions and alliances that bring together various social justice agendas that address race/ethnic, gender, socioeconomic, and sexual health inequities, as opposed to political efforts that narrowly focus on any one segment of the population – such as women’s health.

Conclusion In the first edition of this book, we collectively acknowledged the need to expand on the meaning and boundaries of women’s health but nevertheless concluded that “women” is a reasonable and defendable social category within the field of women’s health (Varcoe et al., 2007). As research has

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progressed, the need to better understand diversity has been acknowledged, and intersectionalityinformed research and policy has evolved, it is time to ask the fundamental question of whether “women’s health” is an adequate and sustainable generic category for research and policy. Not only does intersectionality bring to light the multiple dimensions of a so-called singular category, such as women, making it difficult to sustain the evidence it produces, but it also clearly shows the inherent shortcomings, potential pitfalls, and research errors that can occur when women’s health researchers centre sex and gender in their work, instead of moving to an analysis that captures interactions between broader social locations and structures of power. As a growing body of research evidence demonstrates, such interactions have profound effects on how the biological and social combine to create different experiences and outcomes of health. Questioning or enumerating biological and social differences between men and women and how they relate to a specific health problem or experience produces partial slices of reality – more partial than we are currently capable of producing. Further, categorizing health inequities across groups that may not have any coherence (e.g., women or men) can be misleading and even dangerous. Moreover, overwhelming evidence now shows that health inequities are never the result of any one set of primary explanatory factors (e.g., sex and gender) but instead are the outcome of intersections of different social locations, power relations, and experiences. Recently, the CIHR-IGH (2018) noted that “our understanding of sex and gender and how they intersect with other factors will continue to evolve as research advances” (p. 6). My prediction is that as this work evolves, it will not only be a critical test but also most likely an insurmountable obstacle vis-à-vis a viable future for the field of women’s health as we have known it.

DISCUSSION QUESTIONS 1 What is to be gained by resisting or undermining an intersectional analysis? 2 What are the advantages and disadvantages of approaching health through the lenses of “women’s health,” “men’s health,” and “gender and health”? Why do we need to be using these different ways to categorize health experiences and inequities? 3 Is there a viable future for women’s health or do we need alternative framings for understanding the diversity of experiences of women, men, girls, and boys?

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Olena Hankivsky Rosenfield, S., & Mouzon, D. M. (2013). Gender and mental health. In C. S. Aneshensel, J. C. Phelan, & A. Bierman (Eds.), Handbook of the sociology of mental health (2nd ed., pp. 277–296). Springer. Salganicoff, A. (2013). The future of women’s health: Using data and research to shape policy and programs. http:// publichealth.lacounty.gov/owh/docs/DR-future.pdf Salganicoff, A., Ranji, U., Goodwin, A., & Duckett, P. (2012). Putting men’s health care disparities on the map: Examining racial and ethnic disparities at the state level. Henry J. Kaiser Family Foundation. Sarto, G. E., Brasileiro, J., & Franklin, D. J. (2013). Women’s health: Racial and ethnic health inequities. Global Advances in Health and Medicine, 2(5), 50–53. https://doi.org/10.7453/gahmj.2013.052 Schiebinger, L. (2021). Gendered innovations: integrating sex, gender, and intersectional analysis into science, health & medicine, engineering, and environment. Tapuya: Latin American Science, Technology and Society, 4:1, 1867420. https://doi.org/10.1080/25729861.2020.1867420 Sen, G., & Iyer, A. (2012). Who gains, who loses and how: Leveraging gender and class intersections to secure health entitlements. Social Science & Medicine, 74(11), 1802–1811. https://doi.org/10.1016 /j.socscimed.2011.05.035 Serrant, L. (2020). Silenced knowing: An intersectional framework for exploring Black women’s health and diasporic identities. Frontiers in Sociology, 5, 1. https://doi.org/10.3389/fsoc.2020.00001 Shabsigh, R. (2013). A new multidisciplinary approach to men’s health. Journal of Men’s Health, 10(1), 1–2. Shields, S. A. (2008). Gender: An intersectionality perspective. Sex Roles, 59(5–6), 301–311. https://doi.org /10.1007/s11199-008-9501-8 Smith, J. A. (2007). Beyond masculine stereotypes: Moving men’s health promotion forward in Australia. Health Promotion Journal of Australia, 18(1), 20–25. https://doi.org/10.1071/HE07020 Smith, J. A., & Robertson, S. (2008). Men’s health promotion: A new frontier in Australia and the UK? Health Promotion International, 23(3), 283–289. https://doi.org/10.1093/heapro/dan019 Smith, J. A., White, A. K., Richardson, N., Robertson, S., & Ward, M. (2009). The men’s health policy contexts in Australia, the UK and Ireland: Advancement or abandonment? Critical Public Health, 19(3), 427–440. https://doi.org/10.1080/09581590903074944 Sorensen, C., Murray, V., Lemery, J., & Balbus, J. (2018). Climate change and women’s health: Impacts and policy directions. PLoS Medicine, 15(7), e1002603. https://doi.org/10.1371/journal.pmed.1002603 Spagnolo, P. A., Manson, J. E., & Joffe, H. (2020, September). Sex and gender differences in health: What the COVID-19 pandemic can teach us. Annals of Internal Medicine. https://www.acpjournals.org/doi /10.7326/M20-1941 Springer, K. W., & Mouzon, D. M. (2011). “Macho men” and preventive health care: Implications for older men in different social classes. Journal of Health and Social Behavior, 52(2), 212–227. https://doi.org /10.1177/0022146510393972 Springer, K. W., Stellman, J. M., & Jordan-Young, R. M. (2012). Beyond a catalogue of differences: A theoretical frame and good practice guidelines for researching sex/gender in human health. Social Science & Medicine, 74(11), 1817–1824. https://doi.org/10.1016/j.socscimed.2011.05.033 Statistics Canada. (2014). Health at a glance: Ninety years of change in life expectancy. http://www.statcan.gc.ca /pub/82-624-x/2014001/article/14009-eng.pdf Statistics New Zealand. (2015). New Zealand period life tables: 2012–14, key facts. http://www.stats.govt.nz /browse_for_stats/health/life_expectancy/NZLifeTables_HOTP12-14.aspx Temmerman, M., Khosla, R., Laski, L., Mathews, Z., & Say, L. (2015). Women’s health priorities and interventions. BMJ, 351, Article h4147. https://doi.org/10.1136/bmj.h4147 The Lancet. (2019). Raising the profile of men’s health. Lancet (London, England), 394(10211), 1779. https:// doi.org/10.1016/S0140-6736(19)32759-X Trapence, G., Collins, C., Avrett, S., Carr, R., Sanchez, H., Ayala, G., Diouf, D., Beyrer, C., & Baral, S. D. (2012). From personal survival to public health: A community leadership by men who have sex with men in the response to HIV. Lancet, 380(9839), 400–410. https://doi.org/10.1016/S0140-6736(12) 60834-4

Women’s Health in the Twenty-First Century United Nations. (n.d.). Sustainable development goals. https://sdgs.un.org/goals Vandello, J. A., Bosson, J. K., Lawler, J. R. (2019). Precarious manhood and men’s health disparities. In D. M. Griffith, M. A. Bruce, & R. J. Thorpe (Eds.), Men’s health equity: A handbook (chapter 3). Routledge. Varanka, J. J. (2008). Mainstreaming men in gender sensitive health policies. Journal of Men’s Health, 5(3), 189–191. https://doi.org/10.1016/j.jomh.2008.07.004 Varcoe, C., Hankivsky, O., & Morrow, M. (2007). Introduction: beyond gender matters. In M. Morrow, O. Hankivsky, & C. Varcoe (Eds.), Women’s health in Canada: Critical perspectives on theory and policy (pp. 3–30). University of Toronto Press. Vardeman-Winter, J. (2017). The framing of women and health disparities: A critical look at race, gender, and class from the perspectives of grassroots health communicators. Health Communication, 32(5), 629–638. https://doi.org/10.1080/10410236.2016.1160318 Victorian Women’s Health Services. (2015). Priorities for Victorian women’s health, 2015–2019. Women’s Health Association of Victoria. https://womenshealthvic.com.au/resources/WHV_Publications /Position-Paper_2015.03.12_Priorities-for-Victorian-womens-health-2015-2019_(Fulltext-PDF).pdf Walter, L. A., & McGregor, A. J. (2020). Sex- and gender-specific observations and implications for COVID-19. Western Journal of Emergency Medicine, 21(3), 507. https://doi.org/10.5811/westjem.2020 .4.47536 Wanner, T., & Wadham, B. (2015). Men and masculinities in international development: ‘Men-streaming’ gender and development? Development Policy Review, 33(1), 15–32. https://doi.org/10.1111/dpr.12090 Weber L., Zambrana R. E., Fore M. E., & Parra-Medina D. (2018). Racial and ethnic health inequities: An intersectional approach. In P. Batur & J. Feagin (Eds.), Handbook of the sociology of racial and ethnic relations (pp. 133–161). Springer. Wenham, C., Smith, J., & Morgan, R. (2020). COVID-19: The gendered impacts of the outbreak. The Lancet, 395(10227), 846–848. https://doi.org/10.1016/S0140-6736(20)30526-2 White, A., Mckee, M., Richardson, N., Visser, R., Madsen, S. A., Sousa, B. C., Hogston, R., Zatoński, W., & Makara, P. (2011). Europe’s men need their own health strategy. British Medical Journal, 343, Article d7397. https://doi.org/10.1136/bmj.d7397 Women’s Health Innovation Coalition. (2021). Homepage. https://www.womens.health. World Health Organization. (2002). Mainstreaming gender equity in health: The need to move forward – Madrid statement. http://www.euro.who.int/__data/assets/pdf_file/0008/76508/A75328.pdf World Health Organization. (2015). Gender. Fact sheet N°403. http://www.who.int/mediacentre/factsheets /fs403/en/ World Health Organization. (2018). Gender equality must be at the core of “health for all.” http://www.who.int /mediacentre/news/statements/2018/gender-equality-health-for-all/en/ World Health Organization. (2021). Six priorities for women and health. https://www.who.int/news-room /spotlight/6-priorities-for-women-and-health World Health Organization Europe. (2016a). Women’s health and well-being in Europe: Beyond the mortality advantage. http://www.euro.who.int/__data/assets/pdf_file/0006/318147/EWHR16_interactive2.pdf World Health Organization Europe. (2016b). Strategy on women’s health and well-being in the WHO European region. http://www.euro.who.int/__data/assets/pdf_file/0003/333912/strategy-womens-health-en.pdf World Health Organization Europe. (2018). Strategy on the health and well-being of men in the WHO European Region. http://www.euro.who.int/__data/assets/pdf_file/0010/394894/MHR_strategy_Eng _online.pdf Wilkins, D., & Savoye, E. (Eds.). (2009). Men’s health around the world: A review of policy and progress across 11 countries. European Men’s Health Forum. Women’s Health Action. (2014). A case for a national women’s health strategy in Aotearoa New Zealand by Women’s Health Action. https://www.womens-health.org.nz/wp-content/uploads/2014/08/Womens _Health_Strategy_A4_web.pdf

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CHAPTER TWO

Overhauling Life Course Approaches to Women's Health: Towards an Intersectional Approach Olena Hankivsky and Cole Etherington

A large and rapidly accumulating scientific literature indicates that a life course approach to health is crucial for understanding health in general and, especially, for understanding and responding to health inequities (Braveman, 2014, p. 371). As a result, on a global scale, this approach is a leading theoretical and methodological way to approach women’s health (Hardy et al., 2013; Meleis et al., 2016; Taylor, 2015). In our first edition of Women’s Health in Canada, examining the life course lens highlighted shortcomings such as the disproportionate focus on age (temporal foci), biomedical hegemony, and inadequate attention to contextual and social determinants of health factors. We argued that these shortcomings generated incomplete and incorrect conceptualizations of women’s health (Hankivsky, 2007). In response, Hankivsky (2007) proposed intersectionality as an explanatory resource for health researchers interested in developing life course frameworks. At the same time, it was suggested that the current challenge in applying an intersectional framework was translating the “conceptual approaches to intersectionality to inform the practical requirement of [life course] frameworks” (Hankivsky, 2007, p. 81). Over the last decade, life course conceptions and approaches have changed quite substantially with much more attention being paid to the contextual factors that shape human health across each stage of life (Halfon et al., 2014; Kendig & Nazroo, 2016). Moreover, there has been a proliferation of practical applications of intersectionality to women’s health research and policy (Caiola et al., 2014; Hankivsky et al., 2009; Hankivsky et al., 2010; Hogan et al., 2018; McGibbon & McPherson, 2011; Versey, 2017), including applications of intersectionality to life course approaches and frameworks (e.g., Brown et al., 2016; Etherington, 2016a; Ferrer et al., 2017; Richardson & Brown, 2016). In this chapter, we provide a brief overview of how the life course field has evolved, including developments specific to women’s health. We focus on examples of intersectionality-informed frameworks, assessing their significant contributions to creating new life course paradigms that can “further understandings of how health disparities are produced,

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exacerbated or mitigated, and perpetuated across lifetimes and generations” (Braveman, 2014, p. 317). Finally, we make specific recommendations on how existing intersectionality approaches can be further developed and strengthened in the context of life course models to inform effective strategies for advancing greater health equity among differently situated women across the life course.

THEORETICAL BACKGROUND The life course perspective1 arose in sociology and psychology in the 1960s and since then has been used by economists, demographers, anthropologists, geographers, gerontologists, historians, epidemiologists, and women’s health researchers (Cable 2014; Elder & O’Rand, 1995; Johnstone, 2001; Kertzer, 1991). Recent research has shown that across disciplines, the life course can be conceptualized in five distinct ways: (a) as time or age; (b) as life stages; (c) as events, transitions, and trajectories; (d) as lifespan human development; and (e) as early life influences (and their cumulative effects) on later adult outcomes (Alwin, 2012). Though the life course perspective shares many similarities with other “life” concepts, such as lifespan and life cycle, it is important to avoid conflating these approaches (see Alwin, 2012, for a detailed discussion). Accordingly, the perspective is characterized by five key principles: (a) human development and aging are lifelong processes, (b) individuals make choices within the constraints of structure/history, (c) human lives are interdependent, (d) individuals are situated in time and place, and (e) the timing of events can significantly determine their impact (Elder et al., 2003). In the context of health, the explanatory power of the life course perspective has typically been its ability to locate individuals by chronological and physiological age, organized by period (i.e., eras of ubiquitous historical/social change) and by cohort (i.e., birth year) (Elder et al., 2003). At the same time, specific stages within an individual’s life are now increasingly recognized as only one part of life experiences. Equally important is the systematic account of social and economic factors that affect health at each life stage and at later stages as well (Braveman, 2014; Ferraro & Shippe, 2009; O’Rand, 2006). As Braveman (2014) elaborated: The life-course lens focuses our attention on understanding how social factors—representing risks and opportunities—can create vulnerability or resilience at each stage of life, and how they accumulate across lifetimes and generations. It directs us to consider issues such as how the trans-

mission of wealth and/or educational attainment across generations may contribute to health disparities, and conversely, how experiencing favorable material and social conditions from pre-

conception to old age can contribute to better health in an individual’s lifetime and in subsequent generations. (p. 368)

A life course lens includes not only taking such social and economic factors into account but also considering how they intersect and are influenced by interacting domains (e.g., social structures and institutions) and multiple interlocking forms of oppression (e.g., patriarchy, racism, colonialism, homophobia, ageism) (Etherington, 2016a; Ferrer et al., 2017; George, 1993; Hankivsky, 2007).

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In the Context of Women’s Health An international push to conceptualize women’s health across the life course started in the 1990s, and this framework in the context of women’s health has been evolving for almost 30 years. In the beginning, a life course approach was described, for example, as an innovative mechanism to inform and structure policies that address “specific circumstances and problems women face at various stages of their lives, as well as issues that are universal among women” (Wyn & Solis, 2001, p. 148). It was thought to be particularly effective for expanding notions of women’s health beyond a focus on reproductive and gynecological health (Correa-de Araujo, 2004; Pinn, 2003; Requejo & Bustreo, 2016) and for bringing to light how and why women’s health risks and concerns change over time. Early life course conceptualizations of women’s health tended to compare and contrast the experiences of women and men, including the higher morbidity of women in specific areas of health and the differential health problems experienced by women (Allen & Phillips, 1997; ­Macintyre et al., 1996; McDonough & Walters, 2001). The promise of the life course approach continues to be recognized, and it is now seen as essential for accurate documentation of, comprehension of, and response to the specific challenges and contributing factors that influence girls’ and women’s lives from birth to death (Bustreo et al., 2012; Likis, 2016; Rossi, 1985; Temmerman et al., 2015; World Health Organization [WHO], 2015; United Nations [UN], 2009). Further, the life course approach is viewed as necessary in ensuring that appropriate policies and programs are developed, monitored, and evaluated to “reduce health inequities for women throughout the life course” (WHO, 2016a, p. 1).

International Context Internationally, different interpretations of the life course approach in relation to women’s health have been embraced by organizations and countries. For example, according to the Fourth World UN Conference on Women (United Nations, 1996): Women’s right to the enjoyment of the highest standard of health must be secured throughout the whole life

cycle [emphasis added] in equality with men. Women are affected by many of the same health conditions as men, but women experience them differently. The prevalence among women of poverty and economic

dependence, their experience of violence, negative attitudes towards women and girls, racial and other

forms of discrimination, the limited power many women have over their sexual and reproductive lives and lack of influence in decision-making are social realities which have an adverse impact on their health. Lack

of food and inequitable distribution of food for girls and women in the household, inadequate access to safe water, sanitation facilities and fuel supplies, particularly in rural and poor urban areas, and deficient

housing conditions, all overburden women and their families and have a negative effect on their health. Good health is essential to leading a productive and fulfilling life, and the right of all women to control all

aspects of their health, in particular their own fertility, is basic to their empowerment. (section C, para. 92)

More recent UN examples include Women and Health (2007), which reiterated the global commitments made to date, such as the Beijing Platform for Action’s “holistic and life-cycle approach

Overhauling Life Course Approaches to Women’s Health

to women’s health,” including the strategic objective of increasing women’s access to health care, information and services throughout their lives (UN, 2007, p. 1). Further, The World’s Women 2015: Trends and Statistics (UN, 2015) covers critical policy areas, including health, emphasizing the “experiences of women and men during different periods of life—from childhood and the formative years, through the working and reproductive stages, to older ages” (p. v). Finally, the United Nations General Assembly’s (UNGA, 2016) Report of the Working Group on the Issue of Discrimination against Women in Law and in Practice of the 32nd Session of the Human Rights Council Working Group stated that “substantive equality in the area of health and safety requires differential treatment ... from childhood to old age, women have health needs and vulnerabilities that are distinctively different from those of men” (sect. 3.A.16). It recommends adopting “a holistic approach towards women’s health and safety, [conceptualizing] childhood to old age as interconnected phases with distinct considerations and needs” (UNGA, 2016, section B.105). Other noteworthy examples include The Global Strategy for Women’s, Children’s, and Adolescent’s Health (2016–2030) (Every Women Every Child [EWEC], 2015), which took “a life-course approach that aims for the highest attainable standards of health and w ­ ell-being—physical, mental and social—at every age” (p. 11). It further states “a person’s health at each stage of life affects health at other stages and also has cumulative effects for the next generation” (p. 11). A recent article written by a collaboration of international health organizations entitled “Recommendations towards an Integrated, Life Course Approach to Women’s Health in the post-2015 Agenda” (Azenha et al., 2013) underscores the need for a life course approach, particularly in the context of non-communicable diseases. Further, the mission of the WHO’s (2016a) Strategy on Women’s Health and Well-Being in the WHO European Region is “to inspire governments and stakeholders to work towards improving the health and well-being of women and girls beyond maternal and child health, ensuring that policies and health systems are gender-responsive and based on a life-course approach” (p. 5). The strategy’s adoption of a life course approach aligns with the Minsk Declaration, endorsed at the WHO European Ministerial Conference on the Life-course Approach in the Context of Health 2020, which states that such an approach across government “would improve health and well-being, promote social justice, and contribute to sustainable development and inclusive growth and wealth in all our countries” (WHO, 2015, p. 3). Promoting health through the life course is a key focus area of WHO across all levels, regions, and program areas. This focus includes “the health of women before, during and after pregnancy, and of newborns, children, adolescents, and older people, taking into account environmental risks, social determinants of health, gender, equity and human rights” (WHO, 2016b, para. 1). While the life course perspective is becoming increasingly popular at the international level, three countries in particular have historically taken a leadership role in applying the framework to women’s health. These countries, namely, the United States, Australia, and Canada, have often been the focus of studies comparing similarities and differences in life course transitions within national contexts (e.g., Fussell et al., 2007). Further, the importance of taking a life course approach to women’s health has been recognized by governing bodies in each country, although differences can be found in the application of this approach. For example, the life course approach has been popularized in the United States and accepted by the National Institutes of Health [NIH], Office of

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Research on Women’s Health [ORWH], as an overarching theme for research on women’s health: “The health of girls and women is affected by developmental, physiological, and psychological age. Women’s lives are marked by continuum from intrauterine life to the elderly years: infancy, childhood and adolescence, menarche, reproductive life, the menopausal transition, postmenopausal years, the elderly and frail years” (ORWH, 2004, p. 1). The ORWH recently led the development of the 2019–2023 Trans-NIH Strategic Plan for Women's Health in which there is an explicit acknowledgment that "research to improve the health of women requires a comprehensive consideration of the many factors that influence women’s health, such as sex and gender, race and ethnicity, and a host of other internal and external factors. Moreover, it is critical to consider these factors and their potential interactions across the life course" (NIH, 2019, p. 4). In Australia, the Australian Women’s Health Network (AWHN) released Women’s Health: Meaningful Measures for Population Health Planning in 2013, which provides a conceptual framework for women’s health, which includes a life course approach “to show how the causal relationships between the structural drivers and the second, third and fourth dimensions of women’s health are experienced by women throughout the life course and in different ways” (AWHN, 2013, p. 5). The importance of the life course perspective for women’s health was again echoed by the New South Wales Ministry of Health, which stated: “Adopting a life course framework for women’s health ... provides opportunities for timely preventive healthcare” (Steel et al., 2013, p. 7). And, as part of Australia's National Women's Health Strategy, 2020–2030, a life course to health appears as a key guiding principle. Specifically, the strategy calls for the acknowledgment and response to the intersectionality of health care and the determinants of health across the lifespan, and how this influences the health behaviours and outcomes for women and girls (p. 18). In Canada, historically, there has been notable attention to critical life stages and women’s health. For example, Health Canada’s Women’s Health Strategy (Government of Canada, 1999) aimed at improving women’s health by making the health system more responsive to women and operationalizing their health within a population health framework.2 This framework prioritized three life stages of childhood and adolescence, early to mid-adulthood, and later life. It reflects Health Canada’s overall missions and recognition that “throughout their lives –as children, in middle adulthood and as seniors – women face life conditions and health issues specific to their biology and social circumstances” (Government of Canada, 1999, sect. 1). In 2003, a Health Canada funded report, Women’s Health Surveillance Report, concluded that “our understanding of women’s health would benefit from increased knowledge in this area, and more emphasis should be placed on health across life stages” (Health Canada & Canadian Institute for Health Information, 2003, p. 70). In the last 15 years, however, attention to life course framing has waned. While a decade ago it seemed that both the Canadian Institutes for Health Research-Institute of Gender and Health (CIHR-IGH) and Health Canada were working toward action plans on women’s health with a focus on the life course, this particular framing of women’s health is no longer front and centre. For example, while the IGH 2009–2012 Strategic Plan included a mission to “foster research excellence regarding the influence of gender and sex on the health of women and men throughout life” (CIHR-IGH, 2009, p. 8), no further allusions to the life course were made. In particular, a life course perspective on women’s health remains absent from the Institute’s 2017 Strategic Plan (CIHR-IGH, 2017) and the 2018–2023 Strategic Plan (CIHR-IGH, 2018).

Overhauling Life Course Approaches to Women’s Health

AT ISSUE In the 2007 edition of Women’s Health in Canada, critiques of life course frameworks focused on the dominance of biomedical hegemony, the undervaluation of social determinants, the marginalization of gender, and the inadequate attention to differences among women across all life stages. All these components, as we briefly review below, need to be acknowledged and addressed for any life course framework to be transformed into an effective approach to understanding and responding to women’s health in its diversity. This includes life course approaches to women’s health in policy, which have primarily focused on life stages to the neglect of other axes of inequality beyond sex and age. To illustrate, while biological sex and age matter for health, favouring age- and sex-specific explanations – even when others may be noted or considered – does not provide a sufficient analytic frame for examining women’s health across the life course. In fact, it leads to a number of problematic assumptions and interventions starting with an overly individualistic focus on responsibility for health (Hankivsky et al., 2017). This occurs as sex typically draws attention to individual-level characteristics without situating women’s health in the broader gendered social context. There is a real danger in presenting all choices that women make in their lives as freely determined personal choices. Using this individualistic approach can lead to blaming women for apparent lifestyle choices and concomitant behaviours over which they may have little or no control. Health inequalities cannot simply be reduced to “the unconstrained adoption of insalubrious lifestyle choices” (Smith, 2003, p. xvi). Recognizing the effects of narrowly defined lifestyle factors may be important but ineffectual if these factors are not properly situated in a broad social context (Corna, 2013; Williams et al., 2016; Settersten & Hagestad, 2015). Further, numerous factors may not be modifiable by the individual but instead require attention to the breadth of socioeconomic factors that affect women’s health and predispose many women to disease throughout their lives. Choices are rarely autonomous but instead are shaped by our interdependent and relational existence in society. As Bird and Rieker (2004) explained: “Women’s opportunities and choices are to a certain extent constrained by decisions and actions taken by families, communities, and government policies” and, moreover, “these connections between broader social contexts and individual choices are rarely transparent and their health consequences are often underestimated and overlooked” (p. 23). What any life course framework therefore requires is an explicit incorporation of the determinants of health that inform the context of all women’s lives and health (Nicolau & Marcenes, 2012). As noted above, life course frameworks are now increasingly recognizing the importance of social and economic factors. And yet, until recently, gender has been neglected in comparison to other determinants. Like both age and sex, gender and specifically gender inequality are fundamental dimensions of women’s health throughout the life course (Hagestad & Dykstra, 2016; Hankivsky, 2012; Tobiasz-Adamczyk et al., 2017). While understandings of gender continue to evolve, the way in which gender is accounted for within life course frameworks – as illustrated by the examples above – still lean towards essentialist and deterministic ideas about women’s health. For example, studies that advance a life course approach often observe constant gender effects on health across age groups. Identifying

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age-related patterns in women’s health may be of some value, but on balance, this approach does not attend to differences among women in any sufficient way. Thus, women’s health across the life course cannot be properly explained by appealing solely to gender. Gender must remain an important category; however, its relationship to other categories of analysis must be acknowledged and further interrogated to fully recognize the diversity in women’s lives (Corna, 2013; Hankivsky, 2012). Moreover, the practice of conflating gender with sex should also be avoided as it negates the diversity of both gender and sex and excludes transgender and intersex women, for example. Writing in the Canadian context 25 years ago, Anderson (1993) argued, “As we speak about women’s health across the lifespan ... we need to be clear about who these women are, and we need to keep reminding ourselves of the diversity within this nation” (p. 1). For any life course framework to be inclusive, it is essential that the diversity and variation within age cohorts be made front and centre. Indeed, while biological explanations need to be enjoined by social explanations of gendered health disparities, it cannot be assumed that all women will experience similar patterns of health over their lifetimes. There is a need to interpret age and developmental considerations in a way that is meaningful for the diverse situations of women. This necessitates investigating the ways that women of different backgrounds with different life opportunities and experiences may have unique risks, health conditions, and health outcomes. Just as women’s health researchers have shed light on the differences in health status between women and men, it is equally important to acknowledge that there are both similarities and crucial differences in experiences of health among women based on race, class, and other social divisions (Etherington, 2015; Hankivsky, 2012; Kapilashrami et al., 2016; Walsemann et al., 2016). This is why intersectionality is such an important explanatory resource for life course frameworks and why, as described below, it is becoming increasingly incorporated into life course research, approaches and models.

INTERSECTIONALITY Emerging from Black, global South feminism, and queer and postcolonial theory, intersectionality, as introduced in Chapter 1, uses interactive analyses of several categories of experience and their operation in specific cultural and social contexts. This approach has inspired the development of new conceptual frameworks and methodologies to understand the implications of diversity and the construction of power and privilege, including intersecting domains of inclusion, exclusion, and inequality. Incorporating an intersectional approach within the life course perspective brings attention to the whole person beyond the temporal foci of chronological age, birth cohort, or historical period (Etherington 2016a; Wright 2016). In this way, intersectionality requires us to contend with certain tensions, such as individuals’ simultaneous occupation of both advantaged and disadvantaged positions (Collins, 2000; Hankivsky, 2014; Weber & Messias, 2012). It further rejects essentialist assumptions about gender and other social categories, drawing attention to the importance of intragroup differences and multiple dimensions of stratification. Thus, an intersectional life course approach is most in line with women’s lived experiences of health and well-being.

Overhauling Life Course Approaches to Women’s Health

Research Applications of Intersectionality to Life Course Investigations of Health In the field of health, intersectionality (and interlocking approaches) has been emphasized especially by those working on the life course and issues of aging (Dressel et al., 1997; Holman et al., 2021; Hopkins & Pain, 2007; Hulko, 2016; Krekula, 2007; Richardson & Brown, 2016). Our review of this work suggests that researchers have typically focused on the health implications of age and one other dimension of inequality, such as disability (Kattari et al., 2017), race (Bastos et al., 2018; Gee et al., 2012), socioeconomic status (Shuey & Willson, 2017), and gender (Etherington, 2016b). Much of this work also highlights the dynamic nature of inequality, noting, for example, that experiences of disability can change over time (Kattari et al., 2017) and that experiences of racial discrimination can have cumulative effects on health over the life course (Bastos et al., 2018; Gee et al., 2012). While this integration of intersectionality and life course processes of health is promising, there is still a need to move beyond two-factor explanations and to examine how these intersections result not only in between group inequities but also in differences within groups. Some researchers have been more explicit about multiple grounds of inequality and have started to highlight intragroup differences among women. For example, Brown and colleagues (2016) examined the simultaneous impact of race/ethnicity, gender, socioeconomic status, and age on health. The authors find increased vulnerability to poor health among Mexican ­American and Black women with low levels of education, while highly educated white men experienced the best health. Among women, racial/ethnic inequality in health was also found to be greater at higher income levels than at lower levels (Brown et al., 2016). In another recent study, ­Walsemann and colleagues (2016) found upward socioeconomic mobility reduces risk of cardiovascular disease for white women but not for white men, Black women, or Black men. Specific calls have been made to better understand the interaction between age and gender, which can be viewed as “­intertwined systems” that also interact with other social inequalities over the life course within micro, meso, and macro contexts (Hagestad & Dykstra 2016; Harnois, 2015). From these findings and others (e.g., Brown & Hargrove, 2013; Warner & Brown, 2011), it is clear that intersectional life course frameworks are key to understanding the mechanisms leading to heterogeneity in women’s health outcomes.

Intersectional Life Course Health Models As intersectional life course frameworks are increasingly applied to the study of women’s health outcomes, models combining intersectionality and the life course may be of value in offering explanations for current findings and for generating new hypotheses. Key aspects of existing models may also be used to inform the development of intersectional life course models intended specifically for women’s health. Currently, women-specific models are quite limited. We provide an overview of existing intersectional life course health models below, followed by one existing model for women’s health. Each of these approaches has useful elements that may be integrated in future work to advance the field of intersectional life course approaches to women’s health.

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INTEGRATED LIFE COURSE AND SOCIAL DETERMINANTS MODEL OF INDIGENOUS HEALTH Although intersectionality is not explicitly a principle of the integrated life course and social determinants model of Indigenous health, it does state that multiple forces interact to shape health. Specifically, the model is proposed as a response to the need to capture the “complex, intersecting and interrelated determinants and contexts of Aboriginal health” (Reading & Wien 2009, p. 26). These determinants of health are classified as distal (e.g., historic, political, social and economic contexts), intermediate (e.g., community infrastructure, resources, systems and capacities), and proximal (e.g., health behaviours, physical and social environment) components (BC Provincial Health Services Authority, 2013, p. 19). It is also suggested that the model enables potential trajectories of factors influencing health across the life course to be explored (Reading & Wien, 2009). Prior to this model, Reading (2009) proposed a life course approach to the social determinants of health for Aboriginal Peoples for the Canadian Senate Subcommittee on Population Health. The stated goal of the approach was to “optimize the developmental trajectory over the entire life course” and specifically “address the complex interaction of health determinants across the dimensions of context and history which has led to modern day circumstances, in particular Aboriginal contexts, over the life course” (Reading, 2009, sect. A-2). It is worth noting that many articles on Indigenous health do not use “life course” as a term or perspective but do argue for the recognition of historical and intergenerational understandings of health. This, of course, implies notions of time and life course, and explicitly emphasizes the central life course concept of “linked lives.” According to the notion of linked lives, experiences and events that affect one generation also influence the development of succeeding generations (Elder, 1974). Where the life course perspective often falls short in its application of this concept, however, is in its tendency to focus on one of the linked lives at a time. For example, it considers the impact of parents’ previous experiences on children’s current life trajectories. Here, children’s individual biographies are the focus rather than giving simultaneous consideration to the ways in which each generation moves together through time iteratively affected by historical circumstances (e.g., traumas) and intersecting axes of inequality. Consequently, applications of intersectionality and the life course perspective may benefit from considering multigenerational biographies. In turn, this may serve as a useful approach to understanding Indigenous people’s health and, in particular, Indigenous women’s health.

INTERSECTIONAL LIFE COURSE PERSPECTIVE Though not specific to the health of any one group, Ferrer et al. (2017) proposed an “intersectional life course perspective” (ILCP) as a theoretical lens to facilitate a deeper understanding of how structural forces shape everyday experiences for older people at racialized and marginalized social locations. The ILCP proposes four elements of focus: (a) life events and the timing and structural

Overhauling Life Course Approaches to Women’s Health

forces related to these events, (b) local and globally linked lives, (c) identities and categories and processes of difference, and (d) agency, domination, and resistance. In bridging key components of both intersectionality and the life course, the ILCP allows for personal stories and individual life trajectories to be situated within larger social contexts to better understand how difference, differentiation, and power shape the life course. According to Ferrer et al. (2017), the ILCP presents an important analytical lens to focus on the heterogeneous experiences of aging, to offer a

richer consideration of the complex biographies of communities, to consider a broader and more detailed analysis of the dynamics of power, and to account for the fluid nature of identity that is embedded within particular times, contexts and spaces/places. (p. 15)

The ILCP may therefore be a useful framework within which to situate future research on women’s health.

POWER, INTERSECTIONALITY, AND THE LIFE COURSE Like the ILCP, the model proposed by Raphael and Bryant (2015) combines elements of intersectionality and the life course perspective to understand the nature of health inequalities. Both the intersection of specific social locations (e.g., class, disability, gender) and their latent pathway, and the cumulative effects throughout the life course are positioned within the macro-level context of the welfare state. The model illustrates how the power and influence of organized labour, businesses and corporations, and civil society act in concert with the welfare state to shape public policy and, in turn, the distribution of the social determinants of health across the life course. For example, individuals situated in multiple social locations are hypothesized to be at increased or decreased risk of poor health “as a result of specific public policies at particular periods of the life course” (Raphael & Bryant, 2015, p. 11). Given the particular relevance of public policy to women’s lives (Bird & Rieker, 2008; Corna, 2013), understanding this interaction may prove to be critical in ameliorating health inequity among women and between women and men.

Intersectionality-Informed Frameworks for Understanding Women’s Health over the Life Course At present, there are currently a limited number of frameworks to inform investigations of women’s health from an intersectional life course perspective, though they are certainly valuable. One of the earliest examples is the lifecycle framework developed by Women’s Health Victoria (Australia), which aligns with the life course perspective in its longitudinal view of women’s lives, organized by age. The framework includes subsections within each life cycle stage that “allow for the organization of diverse data on a range of health issues and for a range of different population groups” ( Johnstone, 2001, p. 6). These include socioeconomic correlates and indicators, women in rural and remote regions, Indigenous women, women from culturally and linguistically diverse backgrounds,

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pregnancy and childbirth, sexual and reproductive health, sexuality, mental and emotional health, physical health, disability and chronic illness, violence against women, and behaviours adversely affecting health and caring responsibilities. Another illustrative example is that of the AWHN (2013), which published a conceptual framework for women’s health informed by the life course and intersectionality (see figure 2.1). The framework incorporates four dimensions illustrating the complexities of women’s health: 1 Structural drivers of social stratification, hierarchies, and inequities along the axes of gender, race, ethnicity, sexuality, ability, nationality, rurality, and Indigeneity – and all their intersectionality 2 Women’s lived experiences: social and economic circumstances and their daily living conditions (e.g., gender-based violence, unpaid work, financial insecurity) 3 Health behaviours and risk factors for poor health (e.g., insufficient physical activity, obesity, self-harm) 4 Health issues experienced by women (e.g., mental health issues, chronic diseases, high blood pressure) Intersectionality appears explicitly within the first dimension. It is postulated that intersecting axes of social stratification influence all other dimensions within the model, including the health issues that women ultimately experience (AWHN, 2013). The framework also includes four life stages: girls (0–11 years), young women (12–24 years), mid-life women (25–54 years), and older women (55–74 years; 75+ years). These stages are “located between the first and second dimensions to show how the causal relationships between the structural drivers and the second, third and fourth dimensions of women’s health are experienced by women throughout the life course and in different ways (depending on the stage)” (AWHN, 2013, p. 14).

REFLECTIONS AND RECOMMENDATIONS It is clear from the review of life course frameworks that numerous important developments have the potential to offer better understanding of the diversity of women’s health experiences at each life stage and over the life course. However, important issues need to be addressed and further developed in relation to the potential of intersectionality in this specific context. Based on assumptions that there are inherent tensions between biological and intersectional understandings of life, researchers from biomedical backgrounds may perceived intersectionality as daunting (e.g., Johnson et al., 2012; Couto et al., 2019). However, as Hankivsky et al. (2017) have illustrated, synergies between biomedicine and social science increasingly have been recognized, and interdisciplinary collaboration has become more common, particularly emphasizing how social inequalities become embedded in our biology (Bekker, 2003; Bird & Rieker, 2008; Fausto-Sterling 2000, 2005, 2012; Springer et al., 2012). Most studies resulting from these collaborations have focused on integrating sex and gender but have paid far less attention to how to address issues of diversity beyond gender. One important exception to this

Dimension 1: Structural drivers of social stratification, hierachies and inequities along the axes of gender, race, ethnickty, sexuality, ability, nationality, rurality and Indigeneity -and all their intersectionality

Unequal distribution of power, presitge and resources between women and men especially in relation to: Key requisites for a healthy life e.g. social participation, civic participation, political representation, social connection, economic participation, freedom from violence and dicrimination

Girls 0-11 years* Transition from childhood to puberty and the adolescent years

Young women 12-24 years Transition from adolescence to adulthood Education completion Entry into workforce Relationship and family

Mid-life women 24-54 years Relationship and family Work and life Transtion to the older years Changes in health, social identity

Older women 55-74 years: Ongoing changes in health and social identity 75+ years: Decline in heatlh and end of life

Dimension 2: Women’s lived experiences (social and economic circumstances and their daily living conditions)

Gender-based violence, sexualisation, caring/care giving, casualised work, unequal pay, poor work conditions, low paid occupations/industries, the ‘double day’ unpaid work, lone parenting, medicalisation, inappropriate treatment, not being valued And as women progress through mid-life increasing employment and financial insecurity, increasing housing insecurity, decreasing social capital, increasing social isolation

Gender-based violence, caring/care giving, medicalisation and inappropriate treatment, increasing financial insecurity, entrenched poverty, increasing housing insecurity, increasing social isolation, decreasing social capital, not being valued

Dimension 3: Health behaviours and risk factors for poor health

Stress, self harm, unsafe sexual practices, unwanted pregnancies, problematic use of alcohol and other drugs (including prescription medications), poor diet and nutrition, insufficient physical activity, tobacco smoking, overweight/obesity, poor health screening (or non-screning), poor health literacy

As with young and midlife women but without unwanted pregnancies and poor health screening in later years

Dimension 4: Health issues experienced by women

Sexually transmitted infections, psychological and emotional distress, body image problems and eating disorders, mental health issues (e.g. anxiety, depression), physical and mental health impacts of gender-based violence, high blood pressure/cholesterol/glugose, chronic disease, chronic pain, gynaecological condtions

As with young and mid-life women... and add age-related morbidities e.g. dementia, Alzheimer’s osteoporosis, chronic diseases, injuries (and less gynaecological conditions)

*Girls aged 0-11 years are shown in this conceptual framework for women’s health to indicate that the structural drivers are at work throughout the life course. The conceputal framework, however, focuses on the causal linkages between the four dimensions and their effects on young women, mid-life women and older women.

Figure 2.1  Conceptual framework for women’s health

Source: Australian Women’s Health Network. (2013). Women’s health: Meaningful measures for population health planning. http://awhn.org.au/wp-content/uploads/2015/03/145_AWHNMEANINGFULMEASURESREPORTWEB.pdf, page 13.

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is Nancy Krieger’s (1994) eco-social framework, which captures how health is shaped over the life course by different forms of social inequality operating at multiple levels. Recently researchers have argued that the addition of intersectionality to the eco-social approach can enhance its explanatory capacity further (Agénor et al., 2014). So, the precedent is there to engage with this approach for life course frameworks, even if more work needs to be done to weave together biology/biomedicine with a social science approach that is explicitly intersectional (Hankivsky et al., 2017). To date, in the context of intersectional life course approaches to health and women’s health in particular, many researchers have put forth “age + 1” or “gender + 1” analyses. In other words, the investigation is structured around age or gender and one other social status. Where both age and gender are considered, other critical identities often remain absent. For example, Bastos et al. (2018) referenced intersectionality but modelled gender and racial discrimination as separate variables, reflecting an additive rather than intersectional approach. Etherington (2016b) included interactions between age and gender, as well as gender and socioeconomic status, but never an interaction between age, gender, and socioeconomic status. Of course, existing data limitations may inhibit the feasibility of including every possible dimension on which a person can vary. At minimum, however, at least three categories of identity should be considered (Etherington & Baker, 2016). Of course, this has implications for study design (e.g., adequate sample size, complex statistical analyses) and requires continued methodological advancement within the life course field. It is certainly possible to achieve, as demonstrated by Brown et al. (2016) and Walsemann et al. (2016). In fact, Brown et al. (2016) examined the intersection of four axes of inequality on health (race/ethnicity, gender, socioeconomic status, and age), quantitatively demonstrating that these four social locations simultaneously influence intra-cohort health inequality over time. Future work may choose to build on Brown and colleagues’ (2016) multilevel, mixed-model framework and the use of panel data. Life course frameworks may also be further challenged by having to avoid essentialist or simplified assumptions about the categories of analysis being used. Gender, for example, is not a static category but one that is fluid and diverse (e.g., think transgender persons and different forms of gender identity) that extend beyond, for example, male and female gender classifications. When selecting dimensions of inequality to examine, researchers should also choose carefully and “acknowledge how this selection as well as the collapsing of other categories may alter findings and their interpretation” (Etherington & Baker, 2016, p. 11). Brown et al. (2016) both justified their focus on the dimensions (race/ethnicity, gender, socioeconomic status, age) examined and acknowledged that they did not investigate “a wider array of social factors” (p. 17). Still, this limitation is postulated as a consideration for future research, with no discussion of how including or excluding specific categories may have affected their results. Even intersectional life course policy frameworks, which explicitly state dimensions of social stratification, should at the very least acknowledge that their list is not exhaustive. A good example of this is found within Raphael and Bryant’s (2015) model of power, intersectionality, and the life course, where their list of social locations is followed by the words “among others.” Though not perfect, these words at least suggest that the authors are conscious of the many social locations that exist but may not be listed in their model. Conversely, the AWHN’s (2013) conceptual framework for women’s health lists several

Overhauling Life Course Approaches to Women’s Health

key dimensions of inequality but does not acknowledge that other intersectional drivers of health inequity among women may be at play. An intersectional lens shows that while health is experienced at the level of the individual, individual health outcomes and inequities, manifested in the body, are inextricably linked to interacting processes and structures of power at multiple levels. This line of interrogation is evident in the life course model of the AWHN (2013) and Ferrer et al. (2017) and their attention to structural drivers of social stratification. To get at these structural forces, an intersectionality-informed life course model should, for example, consider the following at each step of analysis: • Women are shaped by the interaction of different social locations such as gender, race/­ ethnicity, age, sexual orientation, and socioeconomic status. • These realities occur within a context of systems and structures of power, including laws, policies, media, government institutions, and international governance structures • These realities change and take on different types of importance according to geographic location and historic periods of time (Hankivsky, 2014). Ultimately, analyses that include multiple layers and levels of inequality are not only more sophisticated and comprehensive but also more accurately capture the ways in which women experience heterogeneity in health outcomes across the life course (Hankivsky et al., 2009; Hankivsky, 2012). As quantitative methods continue to develop novel approaches to best estimate the impact of intersectionality on health within a life course framework, the utility of a mixed-method approach appears ideal (Hankivsky et al., 2009; Hankivsky & Grace, 2016). With supplemental qualitative analyses, researchers may be able to get at the nuances of identities they were not able to assess with quantitative data. For example, qualitative research can facilitate an in-depth exploration of power, which is central to understanding the role intersectionality plays in patterns of health over the life course. That being said, quantitative researchers must continue to advance statistical methods to adequately capture the effect of women’s multiple social positions on health and should engage in intersectionality-informed primary data collection so that future work will have the capacity to consider women as more than two-, three-, or even four-dimensional. Any framework committed to understanding and addressing issues of diversity would also recognize and prioritize the voices of differently situated women – that is, narratives of lived experiences – including beliefs, perspectives, and experiences of health. Lived experiences should inform the generation of knowledge used in life course approaches. Women who are at the intersection of multiple systems of inequality are, after all, in a unique position from which to understand systems of oppression and the meaning and interpretations of different social categories (Brah & Phoenix, 2004; Choo & Ferree, 2010; Collins, 2000; Dhamoon, 2011; Hankivsky et al., 2009; Hankivsky et al., 2010). Their insights can be derived from a variety of research methodologies that incorporate humanistic and social science techniques and collect data using approaches such as open-ended interviews, participant observation, and life histories (Kertzer, 1991; Hesse-Biber, 2013; Weber & Parra-Medina, 2003). The result of such engagement can reveal often overlooked socially constructed life stages and role transitions (Holman et al., 2021) for different subgroups of women.

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Finally, understanding and addressing inequity across the life course necessitates a focus on resistance and resilience, a key principle of intersectionality. As described elsewhere (Institute for Intersectionality Research and Policy [IIRP], 2013), this principle acknowledges the following: The operation of resistance and resilience can disrupt processes of power and oppression. Similarly, policies and discourses that label groups of people as inherently marginalized or vulnerable undermine the

reality that there are no “pure victims or oppressors” (Collins, 1990; Dhamoon & Hankivsky, 2011). Thus, even from so-called “marginalized” spaces and locations, oppressive values, norms and practices can be

challenged. For instance, one principle [sic] mechanism of resistance from subordinated groups has been

collective actions to destabilize dominant ideologies (Dhamoon, 2011). Categorical policy approaches

obscure similarities between groups and their shared relationships to power. It also prevents coalitional work by reinforcing conceptions of difference based upon specific categories. (IIRP, 2013, p. 47).

Considering resistance and resilience is central if we are to move from a common focus on marginalization and vulnerability experienced by populations towards understanding how people navigate and disrupt various forms of power and oppression. Intersectionality-informed understandings of resilience importantly move beyond approaching resistance or resilience as linked to personal capability or capacity alone to seeing it as occurring at multiple levels (e.g., from individuals to communities) and as inextricable from structures and processes of power (Douglas & Watson, 2013; Giesbrecht et al., 2015; Hunting et al., 2015). Accounting for the dynamics of resistance and resilience provides more complete understandings of the operation and effects of power, as well as supporting the identification of strategies that promote resilience and resist oppression. For instance, participatory and qualitative approaches that allow for individuals to speak to these experiences can better highlight particular differences and commonalities within and across groups (Hunting, 2014).

CONCLUSION In conclusion, a life course approach offers a conceptual framework for organizing the study of health and for developing policy interventions that are intended to be responsive to women’s health needs at each life stage. To be effective, however, any framework must synthesize the insights about women’s lives to create some sense of “whole knowledge” about the complexities of women’s health. Understanding women’s health across the lifespan requires an age and biological focus but it also requires more than just a focus on age and biology. An interdisciplinary approach, which enables dialogue between biomedical and social scientists, is necessary (Hankivsky et al., 2017). In particular, drawing on the growing body of literature on intersectionality can provide a way to break new ground regarding the complexities and differences in women’s lives and their experiences of health. As this chapter illustrates, there have been important developments in both acknowledging and operationalizing intersectionality in the context of life course framing. More sustained and sophisticated work therefore will be needed to understand the interactions between age, sex, health determinants, gender. and other social axes of discrimination

Overhauling Life Course Approaches to Women’s Health

and disadvantage within a life course framework to know how to develop effective interventions, when they should be introduced, and for whom they may be most useful. To be consistent with an intersectional paradigm, research must do more than further knowledge; it must also lead to social changes in women’s health.

DISCUSSION QUESTIONS 1 What does a life course approach to health offer for advancing understandings of women’s health? 2 What is the difference between intersectionality-informed and intersectional life course approaches? 3 What important insights have applications of intersectionality to life course thinking generated? What should be the focus of future applications of intersectionality in the context of life course approaches and research?

NOTES 1 The life course perspective is also known as the life course paradigm, framework, or theory (Alwin, 2012). 2 This approach concerns itself with the entire population or large subgroups and rests on a body of research demonstrating that a combination of personal, social, and economic factors, in addition to health services, plays an important role in achieving and maintaining health. REFERENCES Agénor, M., Krieger, N., Austin, S. B., Haneuse, S., & Gottlieb, B. R. (2014). At the intersection of sexual orientation, race/ethnicity, and cervical cancer screening: Assessing pap test use disparities by sex of sexual partners among black, Latina, and white U.S. women. Social Science and Medicine, 116, 110–118. https://doi.org/10.1016/j.socscimed.2014.06.039 Allen, K. M., & Phillips, J. M. (1997). Women’s health across the lifespan: A comprehensive perspective. Lippincott. Alwin, D. F. (2012). Integrating varieties of life course concepts. The Journals of Gerontology: Series B, 67(2), 206–220. https://doi.org/10.1093/geronb/gbr146 Anderson, J. M. (1993, October). Reflections on women’s health in a pluralistic society. [Conference presentation]. Women’s Health Across the Lifespan Conference, Vancouver, BC, Canada. Australian Government. (2010). National women’s health policy 2010. Department of Health and Ageing. https://www.health.gov.au/internet/main/publishing.nsf/Content/3BC776B3C331D5EECA257 BF0001A8D46/$File/NWHP.pdf Australian Women’s Health Network. (2013). Women’s health: Meaningful measures for population health planning. http://awhn.org.au/wp-content/uploads/2015/03/145_AWHNMEANINGFULMEASURESREPORT WEB.pdf Azenha, G. S., Parsons-Perez, C., Goltz, S., Bhadelia, A., Durstine, A., Knaul, F., Torode, J., Starrs, A., McGuire, H., & Kidwell, J. D. (2013). Recommendations towards an integrated, life-course approach

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CHAPTER THREE

Historical and Contemporary Reflections on the Women’s Health Movement in Canada Marina Morrow and Christabelle Sethna

While some attention has been paid to documenting the history of the women’s movement in Canada, there has been less of a concerted effort to chronicle one of its key features: attention to women’s health. By the early 1970s, an identifiable women’s health movement had emerged, overlapping substantially with key events and issues raised by the women’s movement and expanding the definition of what is commonly understood as health. Throughout the following discussion, the women’s health movement will be treated both as a distinct field of theory and activism and as integrally related to and embedded in the larger women’s movement. Historically, both movements are interconnected in terms of their politics and personnel, and both share a common aim: to challenge dominant paradigms related to gender, race, sexuality, ability, age, and class while at the same time building strategies and practices to influence policies related to women’s concerns. The history of the women’s health movement in the Western world is tied closely to philosophical debates about the nature of truth and critiques about essentialism that question what constitutes a “woman”; thus, the very idea of women’s health continually evolves and changes (Mitchinson, 2013; see Hankivsky, Morrow, and Varcoe, Introduction, this volume). This chapter begins with a brief discussion about the ways in which women’s bodies and the ­notion of embodiment itself have variously been conceptualized throughout Western intellectual history. This discussion sets the stage for understanding the impetus for the women’s health movement by emphasizing the ways in which each wave of feminism raised awareness about women’s health, educated health professionals about women’s bodies, and enhanced women’s access to specialized care. The waves metaphor has been critiqued for obscuring the continuity of the women’s movement, oversimplifying the diversity of opinion in each wave, and privileging a ­Eurocentric subject. As well, there are differences of opinion about periodization (Chakraborty, 2004; ­Gillis et al., 2004; Laughlin et al., 2010). However, we use the wave metaphor in this chapter to spotlight peak periods of women’s movement and health activism in Canada. The development of feminism and the women’s health movement in francophone communities and specifically in Quebec w ­ arrants its own analysis. Although we touch upon some important developments in the

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francophone women’s movement, we urge readers to explore references specifically dedicated to Quebec and francophone women (e.g., Lavigne et al., 1982; Lévesque, 2010; Masson, 1999–2000; Mills, 2016; Monnais, 2016; Baillargeon, 1999, 2014, 2019). Concluding the chapter is a brief discussion of women’s health trends and transnational feminist activism.

WOMEN AND THE BODY Throughout Western history, beliefs about the body – particularly those beliefs about the fundamental differences between women’s and men’s bodies – have greatly influenced the development of contemporary Western science and medical practice. Regarded as the “site of unruly passions and appetites that might disrupt the pursuit of truth and knowledge,” the transcendence of the mind over the body is a vaunted goal in the Western tradition (Price & Shildrick, 1999, p. 2). Women’s roles as nurturers and caretakers and their putative messy bodies that menstruate, gestate, give birth and lactate have led to a gendered association of women with the body, nature, and the monstrous, and of men with wisdom, rationality, academic prowess, and culture (Bordo, 1993; Dinnerstein, 1975; Grosz, 1994). Consequently, women have been understood as less capable than men of reason and of achieving higher intellectual and spiritual states of being. Somatophobia, or “fear of the body,” was heightened in discussions about women’s bodies, which were positioned as uncontrollable and in need of regulation, or in Mitchinson’s (2013) terms as “failures.” One historical example of the ways in which female bodies have been marked by irrationality is the ancient association of hysteria with the womb (Laquer, 1990; Price & Shildrick, 1999). In contrast, the male body was understood as orderly and self-contained and viewed as the normative standard against which women’s bodies should be compared. Feminists were concerned not only with the relationship between female and male bodies but also with the complex links between gendered embodiment and the understanding of the self and subjectivity. Importantly, their analysis extended to the racialization of bodies and other markers of biological, social, and cultural “difference.” The rise of scientific racism in the late nineteenth century played a key role in this endeavour, reaffirming colonial narratives that positioned women, as well as Indigenous people, people of colour, people with disabilities, and the working classes, as inferior, uncivilized, and “embodying deviance” in mind and body (Briggs, 2000; Harding, 1993; Schiebinger, 2004; Smith, 2015). Women and racial minorities in general, and expressly Black people, were seen as biologically closer to animals and subjected to scientific examination; blackness itself was medicalized to offer scientific support for slavery (Fausto-Sterling, 1994; Gilman, 1985; Hogarth, 2017; Urla & Terry, 1995; Young, 1999). The fascination with difference also coincided with emerging classifications of bodies as “heterosexual” or “homosexual” (Somerville, 1994), illustrating the ways in which ideologies about race, gender, class, ability, and sexuality together shaped the perception of women’s bodies, health, and disease. Therefore, while the ability to reason and effect transcendence of the mind over the body has been gendered as male, only certain kinds of men (white, heterosexual, able-bodied, middle class) are said to attain it (Garland-Thomson, 1997). Feminists have theorized and understood women’s bodies in a variety of ways over time, and this, in turn, has influenced their understanding of women’s health. Generally speaking, Western feminism

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has moved from an initial desire to transcend the body, to an affirmation of the body and a recognition of body politics, through to a concentration on the relationship between embodiment, fluidity, power, and knowledge (Cleary, 2016; Price & Shildrick, 1999; Bartky, 1993; Reverby, 2003). Current feminist perspectives on the body are far reaching and focused on making sense of the multiplicity of ways that corporeality, subjectivity, and identity intersect through relations of gender, race, class, age, sexual orientation, ability, and migrant status and through health and illness (Ahmed, 2000; A ­ lcoff, 2006; Butler, 2004; Dudley-Shotwell, 2020; Erickson-Schroth, 2014; Garland-Thomson, 1997; Gilman, 1985; Spitzer 2011; Wendell, 1996; Zawilski, 2021). Feminist discussions of the body have revolved around the idea that the biological body “is always historically and politically ‘inscribed’ and shaped” (Bordo, 1993, p. 288). However, while naturalized accounts of embodiment have been contested, feminists have also sought to engage with the corporeal or biological body to validate women’s lived experiences (see Alaimo & Hekman, 2008; Fausto-Sterling, 2000; Haraway, 1985; Tuana, 2010).

THE IMPETUS FOR THE WOMEN’S HEALTH MOVEMENT IN CANADA The women’s health movement arose out of Western intellectual traditions, and also as a result of identifying societal inequities. One of the key defining features of the women’s health movement is that it is “about much more than particular reproductive organs and secondary sex characteristics ... It is defined by, and shaped in, social, psychological, and economic environments and r­ elationships ... This means that health is a social issue and a social contract rather than simply a medical and technical problem to be addressed by experts” (Armstrong, 1998, p. 249). Moreover, the women’s health movement, precisely because it developed both parallel to and as part of the women’s movement, can also be seen as an “epistemological resistance movement geared at undermining the production of ignorance about women’s health and women’s bodies in order to critique and extricate women from oppressive systems often based on this ignorance, as well as creating liberatory knowledges” (Tuana, 2006, p. 2). Women’s health issues have differed during each feminist wave, yet several overarching themes are consistent throughout. These include women’s reproductive health, women’s roles as caregivers, and women’s labour in the health professions. As such, the women’s health movement has engaged with grassroots community-based organizations, universities, hospitals, labour unions, and government institutions. Likewise, it has pursued strategies including direct action and protest, lobbying to influence government health and social policy, and the development of public health education. In what follows, a more detailed analysis of the first (1880s–1940s), second (1960s–1980s), third (1980s–2000s) and fourth (2012– ) waves of the women’s movement is provided, with attention paid to the corresponding social context.

First Wave (1880s–1940s) Studies of the first wave traditionally focused on the concerns of nineteenth-century white middleclass women in English Canada. However, feminist scholars have since developed a more e­ xpansive understandings of the first wave as deeply rooted in colonial politics of race, migration, and

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citizenship (Dua & Robertson, 1999; Forestell, 2005, 2019; Iacovetta et al., 2004; Nelson, 2004). For most of the nineteenth century, the prevailing belief was that white women were by nature’s design the weaker sex, both mentally and physically. White femininity became almost synonymous with mental fragility, and psychiatry would later emerge as a primary tool to pathologize women who did not conform to their prescribed gender roles. Their physical and mental ill health was routinely attributed to malfunctioning reproductive organs, and the goal of the medical profession was to uphold white women’s roles as wives and mothers (Boehnert, 1993; Chelser, 1972; Penfold & Walker, 1983; Perkins Gilman, 1899). Racialized women’s bodies were subjected to sexual violence and viewed in contrast to the established norms of white femininity (Razack, 2000; Smith, 2015). In particular, poor, immigrant, and racialized women, Indigenous women, and women with disabilities were held responsible for overbreeding and contributing to the spread of poverty, criminality, and disease (McLaren, 1990). Customarily, women were considered responsible for their own health and the health of their families and communities. However, the idea that biology dictated women’s destiny meant that they were usually blocked from the pursuit of higher education, political participation, and other civic and social functions outside marriage and child rearing. Medical science solidified men’s control over women. Bodily processes and conditions were medicalized under the management of physicians, effectively undermining women’s own traditional knowledge about matters such as childbirth, sexuality, and menopause but also providing advantages, such as pain relief during labour (Agnoito, 1977; Biggs, 1983; Comacchio, 1993; Duffin, 2010; Ehrenreich & English, 1978; Findlay & Miller, 2002; Riessman, 2010). The medical monopoly was an integral part of European colonization; it displaced women, and Indigenous women in particular, from their roles as midwives and healers (Benoit et al., 2007). In Indigenous communities, women played key roles as health care providers, and their knowledge of medicinal plants was critical to managing various afflictions (Burnett, 2014). Indigenous knowledge about the use of such plants would eventually be appropriated by the pharmaceutical and medical sectors and incorporated into alternative healing therapies (Fournier & Oakley, 2018; Lux, 2016; Roht-Arriaza, 1996). The poor health of Indigenous communities, often marked by rampant tuberculosis, has been attributed to the introduction of European pathogens and colonial-era policies and medical practices; segregated health care emerged because of the perception that Indigenous bodies were threats to public health (Drees, 2013; Lux, 2016; McCallum, 2014). No organized women’s health movement appears to have existed in Canada during the first wave but women reformers grew concerned about health-related issues they associated with a rapid increase in industrialization, immigration, and urbanization, and popular health advice manuals warned against “racial degeneration” and “race suicide” (McLaren, 1990; Mitchinson, 1991; Sethna, 2010; Strange, 1995; Valverde, 1991). First-wave feminists had an international reach well into the 1920s and 1930s, with women’s organizations tackling matters such as world peace, alcohol abuse, female employment, birth control, and the “woman question,” shorthand for vociferous debates about women’s political emancipation (Kealy, 1979; Moynagh & Forestell, 2012; Strong-Boag, 1976). The Women’s Christian Temperance Union (WCTU), with branches in several countries, became one of the mainstays of a Canadian moral reform campaign believed essential to improving public health (Cook, 1995). Racialized women were often foundational to moral reform; for

Historical and Contemporary Reflections on the Women’s Health Movement

example, Black women played key roles in advancing women’s status in their homes, churches, businesses, and communities (Backhouse, 1994; Bristow et al., 1994; Cooper, 2005; Flynn & Aladejebi, 2019; Reid-Maroney et al., 2018; Rhodes, 1999; Small & Thornhill, 2008). Although WCTU members primarily were white and middle class, Black women also participated in temperance activism connected to older anti-slavery work to protect their families (Bridgen-Lennie, 2018). The investment in temperance was in keeping with the strong maternal feminist bent of many first-wave feminists who held that women, in their roles as wives and mothers, had significant contributions to make. They countered medical establishment warnings against women’s participation in higher education and woman suffrage (the right to vote in political elections and stand for political office), insisting that educated women involved in the political life of the nation made for good mothers, robust children, and healthy families. Although racialized women participated in suffrage activism, suffrage was built upon the racial superiority of white women of British origin (Campbell, 2020; Valverde, 1992). Women won the right to vote in provincial elections between 1916 and 1940 and in federal elections between 1917 and 1918. However, the franchise was historically associated with property ownership, thereby limiting the suffrage rights of many women and men (Bacchi, 1983; Cleverdon, 1974; Errington, 1993; Sangster, 2019; Valverde, 1992). Some first-wave feminists took a socialist tack and were involved in improving labour and housing conditions, chiefly for single and immigrant women who worked as domestic servants or in the retail and garment industries. Gains made were resisted, mostly in the realm of paid employment for married women (Frager, 1992; Parr, 1990; Steedman, 2008). The concept of moral reform itself was deeply skewed towards nativism and threaded through with the pseudoscience of eugenics that racialized concepts of health and disease (Dyck, 2013; Moss et al., 2013). The commitment of most white, middle-class first-wave feminists, including the most prominent, such as Emily Murphy,1 to their own race and class interests and loyalty to the British Empire in English Canada meant that they directed their eugenicist efforts most often towards regulating the behaviour of women on the margins of society, including a preoccupation with their physical, mental, and moral hygiene (McLaren, 1990; Myers, 2006; Sangster, 2001; Valverde, 1992). First-wave feminists took issue with the negative health impact of repeated childbearing, violence against women and children, prostitution, and sexually transmitted infections. A closer look suggests a budding analysis of male dominance that supported a woman’s sense of bodily integrity and the right to reject unwanted sexual advances, even from her own husband, couched in the rhetoric of maternal and child welfare (Bland, 1983; Gordon, 1988; Stanko, 1986; Valverde, 1991). Some of this activism took the form of protesting against tacit tolerance of the sex trade (Backhouse, 1991; Dubois & Gordon, 1983; Walkowitz, 1980). In other cases, it promoted sexual abstinence before marriage and, significantly, periodic sexual abstinence within marriage to prevent unwanted pregnancies. “Voluntary motherhood” was considered an acceptable form of birth control particularly when the sale, advertisement, and dissemination of birth control and the practice of abortion were criminalized, contraceptives were unreliable and associated with the sex trade, and ovulation patterns were not yet understood (Gordon, 1976; McLaren & McLaren, 1986; Valverde, 1991). While abortion was used most often as a backup method of birth control, it was frowned upon and practiced covertly.  A small birth control movement supported by some feminists and eugenicists emerged only in the 1920s and 1930s (McLaren & McLaren, 1986). It favoured incarceration

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in asylums and compulsory sterilization to prevent the birth of the “feeble-minded,” with ­Alberta and British Columbia passing compulsory sterilization acts in 1928 and 1933, respectively (­Dowbiggin, 1997; Dyck, 2013; McLaren, 1990). Compulsory sterilization disproportionately targeted racialized populations and is viewed as one of many state policies that continued to undermine ­Indigenous women and Indigenous land claims (Stote, 2015; Dyck & Lux, 2016). In the late 1930s, the trial of a social worker hired by the Parents Information Bureau to distribute contraceptives in a poor francophone Ottawa neighbourhood led the court to rule that contraception could be used if it were in the “public good.”  This significant legal decision was couched in ­arguments about supposed francophone and working-class overbreeding (Dodd, 1983; Revie, 2006). There were also attempts to expand the scope of practice and professionalization of nursing (Dodd & Gorham, 1994). Women in religious orders had typically been at the forefront of health care provision in hospitals, asylums, and missions (Paul, 1994; Perreault & Thifault, 2012). The Victorian Order of Nurses was founded by the National Council of Women of Canada (NCW) in 1897 in order to aid women in rural communities with limited access to physicians. This care was originally meant to include midwifery but physicians vehemently opposed it (­Mitchinson, 1991, ­ nglish-speaking 1993). Branches of the NCW, which also emerged in Quebec, were dominated by E Protestant women, and Montreal religious authorities banned Catholic groups from joining the organization, limiting the participation of French-speaking Catholic women. In 1907, Catholic women in Quebec launched a feminist organization, the Fédération nationale Saint-Jean-Baptiste. Members concerned themselves with several matters, among them the prohibition of alcohol, ­infant mortality, milk pasteurization, and woman suffrage, the last eliciting much opposition from religious, political, and medical figures (Baillargeon, 2014; Dumont, 2012; Lévesque, 2010). Faced ­ ontreal with discrimination against Jewish physicians and nurses, the Jewish community in M opened its own charitable health service, the Herzl Dispensary, in 1912 and in 1934, the Jewish General Hospital (Guttman & Wright, 2018). Women who wanted to train as physicians met with resistance from the medical profession; it was argued that women were not physically or mentally equipped to be physicians, and ­university medical schools were reluctant to admit female students (Backhouse, 1991; Duffin, 2010; ­Mitchinson, 1993; Stanley, 2019). Nursing became one of the primary occupations for women, especially after many volunteered on the front lines during World War I and provided care at home to those stricken by the 1918 global influenza epidemic when public health care systems were undeveloped (Humphries, 2013; Quiney, 2013, 2018; Toman, 2015). Nursing wages, mobility, and respectability attracted many women, but hospital quotas and bans kept women of colour out of the profession. Public health nurses, who had more autonomy than did nurses who worked in hospitals, were expected to transmit white middle-class values to the Indigenous and immigrant communities they served (Brandt et al., 2010; McPherson, 2003; Rutherdale, 2010).

Second Wave (1960s–1980s) The most systematic refutation of the idea that differences between men and women can be attributed to some eternal “feminine essence” came from French intellectual and existential philosopher Simone de Beauvoir, author of The Second Sex (1952).2 Her contention that “one is not born,

Historical and Contemporary Reflections on the Women’s Health Movement

but rather becomes a woman” led the way for understanding women’s particular circumstances through a social rather than biological lens and showed how women collectively were considered the “Other.” The Second Sex also marks the beginning of feminists’ discussions (alongside phenomenologists) about the relationship of the body to the self, positing that bodily existence is lived differently for men and women (Kruks, 2010). Ten years after the English translation of The Second Sex appeared, Betty Friedan, the American author of The Feminine Mystique (1963), disputed the media portrayal of marriage and motherhood as emotionally fulfilling to women, arguing that these roles generated deep psychological unhappiness. In Canada, the popular women’s magazine Chatelaine tackled the malaise of the suburban housewife even before the appearance of Friedan’s bestseller. Such ideas contributed toward a groundswell of second-wave feminist theorizing and activism (Dijkstra, 1980; Freeman, 2001; Korinek, 2000; Mann & Ferrari, 2017). Whereas some women’s postwar organizations focused on matters like peace and nuclear disarmament (Hammond-Callaghan, 2015), price controls on consumer goods (Guard, 2019), and education for Black students (Hill, 1996) women’s liberation groups, initially the most public facet of second-wave feminism, focused on women’s equality. The emergence of the women’s liberation movement coincided with a rise in women’s employment outside the home, a baby boom, major reforms to divorce, contraception, abortion and homosexuality laws, the growing secularization of society, and intense sociopolitical upheaval (Baillargeon, 2014; Cohen, 1993; Dummitt & Sethna, 2020; Owram, 1996; Prentice et al., 1988). Women’s liberation was significantly influenced by the New Left; decolonization; opposition to the Vietnam War; movements for civil, student, ­Indigenous, and gay rights; and, in Quebec, the Quiet Revolution. Disenchanted with the ways in which male-dominated political protest fostered sexism, women held consciousness-raising meetings to speak about their experiences as women, question gender role stereotypes, and contest state control of their bodies. The popular second-wave feminist slogan, “The personal is political,” accurately encapsulated this awareness for the women’s liberation and women’s health movements. (Bernstein et al., 1972; Brodie et al., 1992; Morgen, 2002; Nelson, 2015; Sethna & Hewitt, 2018; Vickers, 1992). Critics have suggested that some early second-wave feminists held on to the belief that women’s bodies were somehow “troublesome” and that equality would be achieved when women could move beyond them (Firestone, 1970; Young, 1989). However, alongside the inclination to escape female embodiment, existed the push to value women’s unique bodily experiences, unmediated by the medical profession, with a concentration on how the maternal body, in particular, could be of positive value to women and society (Rich, 1980; Ruddick, 1983). The reclamation of the maternal body was also regarded as buoying anti-militarism and respect for the natural world – indeed, some feminist ecologists used maternalist politics to anchor their environmental claims (Griffin, 1978; Seager, 2003). Unsurprisingly, the “politics of the body,” encompassing menstruation, contraception, abortion, pregnancy, breastfeeding, violence against women, and issues related to women’s work in the health care sector were some of the main flash points for the second wave (Roach Pierson, 1993). The second wave is now often characterized as a period dominated by the narrow viewpoint of white, middle-class, able-bodied, heterosexual women, a reproach that has also been levied against the work of de Beauvoir and Friedan (Boni, 2017; hooks, 2015). This is somewhat true, but

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second-wave feminists also took diverse and highly contested political and theoretical positions ( Jaggar & Rothenberg, 1984). Furthermore, Indigenous, working-class, and immigrant women; lesbians; women with disabilities; and women of colour confronted exclusionary practices and critiqued notions of a universal shared “sisterhood” by pointing to inequities among women (Bannerji, 1987; Davis, 1981; Dua & Robertson, 1999). Later, Kimberlé Crenshaw (1991), drawing upon the earlier work of Black, Latinx, and Indigenous feminists in the United States (e.g., Anzaldua & Moraga, 1981; Cade, 1970; Combahee River Collective, 1977; Davis, 1981; Lorde, 1984), would go on to coin the term intersectionality, theorizing that oppression based on gender interlocks and overlaps with social positions like race and class. Some scholars have argued that Indigenous feminist activism constituted its own social movement against patriarchy and colonialism and is tied closely to demands for Indigenous ­self-government ( Jamieson, 1979; McIvor, 1999). One of the key issues animating this activism during the second wave was the ongoing struggle for women to receive equal status under the Indian Act in Canada. Indian Rights for Indian Women (IRIW) was formed in 1967, and one of its key members, Mary Two-Axe Earley, was pivotal in fighting for Indigenous women’s rights, including property rights. She and other Indigenous women, such as Jeannette Lavell, Yvonne ­Bedard, and Sandra Lovelace, made human rights arguments in the 1970s that led to the amendment of the Indian Act in 1985 with Bill C-31. It allowed for the return of Indian status to those who had lost it, thereby reinstating property rights and other social entitlements to women who had lost status by marrying out of their Indigenous communities. However, their status could not be passed on to their grandchildren (Bourassa et al., 2004; Furi & Wherrett, 2003).3 During this time, women’s movement infrastructure grew rapidly. Women’s studies courses and programs were introduced into universities and colleges, generating innovative research methodologies and pedagogies (Kolodny, 2000; Robbins et al., 2008). Feminist magazines, newspapers, newsletters, bookstores, and presses thrived ( Jordan, 2010). Studio D, the feminist filmmaking arm of the National Film Board of Canada, was founded in 1974 (Vanstone, 2007). Organizations proliferated, including the establishment of rape crisis centres, women’s shelters, and centres specific to women’s health (for example, the Vancouver Women’s Health Collective, the Regina Immigrant Women’s Centre, Naissance Renaissance Outaouais, DES4 Action, the Fredericton Women’s Centre). The “do-it-yourself ” ethos of second-wave feminists was a response to a distrust of the male-dominated medical profession and pharmaceutical industry. That distrust was later captured in a popular play, Side Effects, which emerged out of a collaboration between ­Canadian and ­Bangladeshi women and toured across Canada (Lysnes, 1986). It was also manifested in the development of women’s health centres and self-help groups to support women with mental health problems, breast cancer, and endometriosis and provide alternative approaches to health care, including ­instruction in gynecological self-examinations and menstrual extraction – itself an early abortion method – and abortion referral services (Boscoe et al., 2005; Deibert-Turner, 2013; Greaves, 2018; Kaplan 1995; Murphy, 2012). Autonomous organizing of immigrant women, women of colour, Indigenous women, and women with disabilities also led to organizations ­designed to address their specific concerns (e.g., the Toronto-based Centre for Spanish Speaking Peoples and the Congress of Black Women of Canada in 1973, Women Working with Immigrant Women and the Native Women’s Association of Canada in 1974, the DisAbled Women’s Network [DAWN] in 1985, and

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Women’s Health in Women’s Hands in 1988) (Boscoe, 1994; Little et al. 2020; Morrow, 1997; Small &Thornhill, 2008; Tuana, 2006). The circulation of inexpensive self-help grassroots publications about women’s health was an important part of the women’s health movement (Greaves, 2018). A student initiative against illegal abortion at McGill University led to the notable Birth Control Handbook (1968) and later spawned the feminist Montreal Health Press, which produced numerous health-related works. Subsequent editions of the Handbook critiqued state population-control policies as racist and ­eugenicist. A French-language version espoused Québécois women’s access to contraception and abortion, as well as Quebec independence and community-run health care clinics (Sethna, 2006). In the United States, the Black Panthers, a Black Power organization, established such clinics to counter the racism of the “medical-industrial complex” (Nelson, 2011), and the Boston Women’s Health Book Collective researched, wrote, and published Our Bodies, Our Selves (1970) to address the sexism of the medical profession.5 The text discouraged the medicalization of women’s bodies and provided up-to-date information about pregnancy, childbirth, contraception, abortion, sterilization, menopause, sexually transmitted infections, and lesbianism (Wells, 2008). It would be updated over the decades, translated into multiple languages, and adapted to suit local women’s health needs (Bogic, 2018; Davis, 2007). Between 1979 and 1993, a collective of women in Toronto published Healthsharing, a magazine that highlighted the ways in which women were discriminated against in the medical system and addressed health issues specific to marginalized women (Dua et al., 1994). It shored up support for the founding of the Canadian Women’s Health ­Network (CWHN) in 1993. The network’s mission was to develop a Canada-wide database identifying groups and resources on women’s health issues (Boscoe, 1994; Ford, 2016). At a policy level, pressure from women’s organizations resulted in the establishment of the Royal Commission on the Status of Women in 1967. The commission was charged with documenting the situation of Canadian women and putting forth recommendations that would boost women’s equality. Although health was not its explicit focus, the commission provided women with an opportunity to express their views on pregnancy and abortion; however, in their 1970 report, commissioners remained divided in their opinion about abortion (Bégin, 1992; O’Neill, 2003; Stettner, 2012). To ensure that the commission’s recommendations were implemented, the National Action Committee on the Status of Women was launched, as well as other regional ­advisory councils. The need to create inter-regional ties was recognized, and a number of local and provincial groups were founded (e.g., le Regroupement des Centres de Santé des Femmes du Québec). As part of this conversation, in 1986, women attending a health and welfare conference on women and addictions, proposed the formation of a women’s health network. This proposal resulted in federal support from Health Canada for CWHN. Until its closure because of government cutbacks in 2017, the CWHN’s mission was to develop a Canada-wide database identifying groups and resources on women’s health issues (Boscoe, 1994). The need for an organized health movement during second-wave feminism was sparked by several scandals that affected women’s reproductive health negatively, such as the revelation of the harmful side effects of drugs like thalidomide,6 DES, and the first generation of oral contraceptives (Al Jishi & Sergi, 2017; Chisholm, 2016; Seaman, 1995). Illegal abortion came to be acknowledged as a major public health problem. The passage of a new abortion law in 1969, which

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gave hospital-based therapeutic committees the power to determine whether the pregnancy risked the life or health of the woman, proved restrictive and arbitrary in practice. Consequently, many women were compelled to carry an unwanted pregnancy to term, go abroad or to another province for abortion services, or continue to seek illegal abortions (Sethna et al., 2013). Protest against this law lay behind the decision of the Vancouver Women’s Caucus to travel from Vancouver to Ottawa in 1970 in an Abortion Caravan, calling for abortion law repeal (Rebick, 2005; Sethna & Hewitt, 2009; Wells, 2020). Several pro-choice organizations emerged, such as the Canadian Abortion Rights Action League/Association Canadienne pour le Droit a l’Avortement (CARAL/ ACDA),7 dedicated to protecting safe, legal, affordable, and accessible abortion services and to backing Montreal-based Dr. Henry Morgentaler’s battles against the 1969 law (Desmarais, 1999; Dunphy, 1996). Significantly, racialized women, Indigenous women, lesbians, and women with disabilities began moving beyond the pro-choice model, developing a “reproductive justice” framework that analyses how population-control policies, poverty, racism, ableism, and environmental degradation curtail women’s choices to have and raise their children (Ackerman & Stettner, 2019; DAWN, 1988; Egan & Gardener, 1994; Lippman, 1999; Yee et al., 2011). Some Indigenous women and women with disabilities reported being forcibly sterilized and lesbians were generally barred from being able to adopt children, with some losing custody of their own children after divorce (Agger, 1976; DAWN, 1988; Dyck & Lux, 2020; Bourne, 1993; Little, 1998; Stote, 2015). Feminist activists also took up the issue of new reproductive technologies (NRTs) that became more available in the 1980s. They concentrated on the potential dangers of fertility drugs and the invasive procedures involved, and they acknowledged that health resources were directed towards helping infertile women while ignoring some of the common causes of infertility, such as chlamydia. A call to investigate the physical and moral repercussions of NRTs resulted in the 1987 Canadian Coalition for a Royal Commission on the New Reproductive Technologies. Its final report in 1993 was divisive, with critics charging that the commissioners had been biased in favour of medical professionals and pharmaceutical companies, and many feminists who originally called for the commission later protested against it (Baylis & Downie, 2013; Pierson, 1993). Second-wave feminists tended to disparage “compulsory heterosexuality” as an institution that oppressed women and declared women’s sexual pleasure to be unique and apart from that of men’s (Rich, 1980). Drawing on the work of feminists who rejected psychiatric notions of women’s sexual frigidity (Greer, 1970; Koedt, 1970; Millet, 1970), and bolstered by the release of several important research studies on sexuality (Hite, 1976; Kinsey et al., 1953; Masters & Johnson, 1953), a more complex understanding of women’s sexual responses surfaced. Workshops by women about women’s sexuality became popular, and lesbian feminists contested the pathologizing of lesbian sexuality, succeeding, with some gay male allies, in pressuring the psychiatric establishment into removing homosexuality as a diagnosis from the Diagnostic and Statistical Manual of Mental ­Disorders in 1972. Some feminists insisted that a lesbian relationship was the most valid expression of sisterhood and called for lesbian separatism and the development of a visible lesbian culture. Some lesbians allied with gay men to resist police harassment and violence and build queer communities (Kinsman & Gentile, 2010; Korinek, 2018; Ross, 1995; Smith, 1999). Other feminists saw pornography and sex work as abusive to women, a point reinforced in the Studio D 1981 documentary

Historical and Contemporary Reflections on the Women’s Health Movement

by Bonnie Sherr Klein, Not a Love Story: A Film About Pornography. They clashed with those who insisted that restrictions placed on women’s sexual expression in the name of feminism smacked of the first-wave feminist campaign for moral reform and placed individuals at the mercy of Canada’s obscenity laws (Sullivan, 2014). These fierce “sex wars” positioned feminists as either pro- or anti-sex (Cole, 1993; Cossman et al., 1997; Rubin, 1982). The sex wars took place against the backdrop of a global AIDS pandemic. We now know that AIDS is a sexually transmitted illness caused by HIV that can be managed effectively with a combination of antiretroviral drugs. Initially, AIDS was stigmatized as a “gay plague” (Treichler, 1987, p. 32) and racialized as African in origin, as evidenced in research on the dual impact of AIDS and racism on Montreal’s Haitian community (Namaste, 2019; Wertheimer, 2007). In some right-wing circles, it was also seen as divine punishment for sexual immorality (Petro, 2015). As AIDS deaths skyrocketed worldwide, local, national, and international grassroots activism by queer communities raised awareness about the disease and pressured governments to respond effectively (Brier, 2007; Patton, 1990). Research showed that women’s physiology, in combination with their lower socioeconomic status and vulnerability to sexual violence, makes it easier for them to become infected with HIV, with Indigenous women having higher rates of infection than non-Indigenous women. These higher rates are interpreted as an outcome of regulatory statebased mechanisms, such as the Indian Act and ongoing colonial oppression (Bourassa et al., 2004; Canadian HIV/AIDS Legal Network, 2017; Halseth, 2013). Connected to the exploration of women’s sexuality was a growing acknowledgement of the ubiquity of men’s violence against women. Second-wave feminists developed new frameworks of analysis and worked vigorously to identify it as a serious social problem and public health threat (Hankivsky & Varcoe, 2007). Rape came under concerted scrutiny. Some feminists asserted that rape was an act of power, not an expression of sexual desire, arguing that most rapists were not strangers but known to the women they raped and that women who reported rape were often disbelieved (Brownmiller, 1975; Clark & Lewis, 1977). Although large-scale sexual violence against Indigenous and Black women by white men was integral to colonizing the Americas, it was downplayed. By contrast, the rape of white women was highly politicized, with white women portrayed as the innocent victims of Black or Indigenous male rapists (Davis, 1981; Smith, 2015). Women participated in annual Take Back the Night marches and took self-defence classes (McCaughey, 1997). “Jane Doe,” attacked by a serial rapist in her own Toronto apartment in 1986, successfully sued the Board of Commissioners for the Metro Toronto Police for negligence and for violating her equality rights and infringing upon her right to security of the person under the Canadian Charter of Rights and Freedoms (Doe, 2004). Despite some positive legislative changes, conviction rates for those accused of rape remain low and racialized men are still more harshly penalized by the criminal justice system than white men for similar sexual crimes against women (LaFree, 1989; Rotenberg, 2017). Activism on violence against women also included a budding sense of the role of the media in promoting images of women that normalized sexual violence. MediaWatch was formed in 1981 to monitor the media for offensive images of women (Roach Pierson, 1993). Some second-wave feminists linked the media’s sexualization of women’s bodies to dissatisfaction with their physical appearance and a jump in eating disorders and cosmetic surgery (Bordo, 1993; Ciliska & Rice, 1989; Nopper & Harley, 1986; Wolf, 1991).

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When Canadian member of Parliament Margaret Mitchell first raised the topic of husbands beating their wives in the early 1980s, she was greeted with derisive laughter from her parliamentary colleagues (Mitchell, 2007). Undaunted, feminists took on the issue of domestic violence, temporarily housing women and children away from their abusers in women’s shelters (Pizzey, 1974).8 However, then as now, shelter outreach to rural, immigrant, and Indigenous women; women with disabilities; and women who speak neither English nor French is limited ( Janovicek, 2007; Walker 1990). Incest and child sexual abuse also appeared on second-wave feminists’ radar after the publication of American author Louise Armstrong’s (1978) groundbreaking Kiss Daddy Goodnight: A Speak-Out on Incest, and memoirs about childhood sexual abuse (Fraser, 1989; Danica, 1989; Rebick, 2018). With increasing numbers of women employed outside the home, sexual harassment in the workplace received considerable attention as a form of sex discrimination (Mackinnon, 1979). Legal cases expanded upon this approach, indicating that sexual harassment includes a range of conduct that can “poison” the work environment and violate human rights (Campbell, 1992). Studies of sexual harassment in universities and high schools – dubbed “the chilly climate” – highlighted its tendency to short circuit women’s work performance and career opportunities (Hall & Sandler, 1982; Larkin, 1994). Men’s violence against women came to be seen as existing on a continuum (Kelly, 1988), but some second-wave feminists went further, turning toward a wider analysis of state violence that acknowledged how state policy, practice, and inaction constitute structural violence. The ongoing legacy of colonial oppression, including the impact of intergenerational trauma resulting from residential schooling and the “Sixties Scoop,”9 coincided with activism related to land rights and political sovereignty (Truth and Reconciliation Commission of Canada [TRC], 2015). Using the work of anti-psychiatry activists, some second-wave feminists critiqued the “psychiatric paradigm” and raised the alarm over abuses of psychiatry (see Morrow, Chapter 14, this volume). Feminists also noted professional collusion in pathologizing female victims of violence through the tools of psychiatry and psychiatric diagnosis (Burstow, 1992; Caplan, 1985; Chesler, 1972; Morrow, 2017; Penfold & Walker, 1983). The 1980s ended with the shooting of 14 women in Montreal’s École Polytechnique by a man who blamed feminists for his rampage. Their murders led to the promotion of women in engineering, action on gun control laws, and a White Ribbon campaign in which men pledged never to commit or condone violence against women (Kaufman, 2012).

The Third Wave (1990s–2012) Third-wave feminism is often perceived as a generational conflict, with younger women refusing any prescription for the “right” way to be a feminist or indeed, a “woman” (Faludi, 2010; Snyder, 2008; Walker, 1995). Second-wave feminists may have argued that gender is a cultural configuration that is often misunderstood as natural, but no one doubted that biological sex existed ­independent of culture. Judith Butler (1999) threw this assumption into question, however, arguing that sex and gender belong to the realm of discourse. Just as earlier feminists tried to deconstruct gender, Butler’s aim was to deconstruct sex. In effect, third-wave feminists came to appreciate that much of biological “science,” as well as our very experience of the body, is filtered through language and metaphor, while at the same time continuing to debate the materiality of the body (Zalta et al.,

Historical and Contemporary Reflections on the Women’s Health Movement

2014). The result is feminist health scholarship that takes apart the language of science to expose the ways in which it constructs illness, disability, and disease (Patton & Richter, 2007). Third-wave feminist activists were greatly influenced by poststructuralism, overturning familiar oppositional binaries, such as man versus woman and nature versus culture, that have shaped the structure of Western thought. They saw their task as reclaiming the marginalized female/feminine body without reinstating it as a closed, unified, and universal category or policing the boundaries of sexual expression (Butler, 1999; Gillis et al., 2004). As well, the concept of intersectionality was increasingly used to identify interlocking forms of oppression in the context of health (see Hankivsky, chapter 1, this volume) and the work of Indigenous feminists on decolonizing methodologies and health research extended into the health care field (see Varcoe and McKenzie, c­ hapter 7, this volume). While poststructuralists were jettisoning the notion of the stability of the body, some feminist activists in the disability movement returned to the notion of the “weightiness of the body” drawing attention to its materiality and to embodied experiences (Gonzalez-Arnal et al., 2012), such as the case of breast cancer survivors, who documented on film the impact of medical treatment on their minds and bodies (Karpinsky, 2014). The flowering of “queer theory,”10 which posits sexual orientation and gender identity as unstable rather than static, resulted in greater attentiveness to the bodies of transgender people. Trans Pulse in Ontario was founded in 2004 partially because of discrimination transgender individuals encountered from health care providers (Cope & Darke, 2002; Goldberg, 2004; Mathieson, 2007).11 Trans Pulse aimed to educate health providers about hormone treatment, gender-affirming surgery, and reproductive needs. Later, in Vancouver, the Catherine White Holman Wellness Centre (2019), a group of physicians and trans allies, also dedicated itself to support the health needs of transgender individuals. Transgender issues within feminism have been fraught with controversy, with some feminists asserting that only biological women could claim experiences of gender oppression (Grosz, 1994; Jeffreys, 1997; ­Raymond, 1979). ­Nevertheless, transgender activists began to make a case for transgender feminism (­Bornstein, 1994; Koyama, 2001), and organizing around transphobic violence, gender-neutral bathrooms, and costs associated with specialized medical care (Cavanagh, 2010; Irving & Raj, 2014; White & Goldberg, 2007; see also Bauer and Hammond, chapter 13, this volume). During the third wave, feminist activism and scholarship took on issues related to neoliberal globalization, analysing how migration, trade in goods and services, privatization of many services in the public health care sector, and governance of international bodies were affecting women’s health and health policy in Canada (Hankivsky & Morrow, 2004; Koivusalo, 2003; ­Spieldoch, 2001; White, 2001). Women’s health activists took up labour concerns within the health care professions themselves, questioned women’s concentration in health care jobs with the least s­ tatus and remuneration, and were also highly active in labour unions, promoting women’s roles in n ­ on-traditional jobs (Luxton, 2001). Concerns encompassed the unpaid labour of women who provide the majority of care for children, the elderly, and the sick. Much of this labour has a­ lways been performed by poorly compensated, new immigrant women who were often subjected to ­racism on the job (­Calliste, 1993; Flynn, 2004; Namaste, 2019). The discovery that the health of immigrant women declines after arrival in Canada, combined with their preponderance in low-paid and ­unskilled jobs, despite often having professional credentials, led feminists to document such injustices (Spitzer,

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2011; Vissandjée et al., 2007). The poor health and labour conditions of undocumented migrant women in agriculture and other economic sectors were also examined (Stasiulis & Bakan, 2003; Sharma, 2008; Magalhaes et al., 2010; Walia, 2010) and so too was the negative impact of racism on personal health and the health care system itself (Harding, 2005). Activism and lobbying, workshops, and reports by women’s health organizations regarding women’s health research and health policy intensified (e.g., Canadian Advisory Council on the Status of Women, 1994; Ford, 1990; Health Canada, 1999).12 In the mid-1990s, Health Canada established the Centres of Excellence in Women’s Health Program in five provinces (BC, Ontario, Manitoba, Quebec and Nova Scotia). The work conducted at the centres was policyoriented and comprised partnerships with academics, researchers, health care providers, and community-based women’s health organizations. A number of national groups came together under the centres, ­including the National Coordinating Group on Health Care Reform and Women and the Women and Health Protection Working Group (2010), which continue to monitor Canada’s prescription drug regulations and lobby for more transparency about adverse side effects.13 In 2000, the federal government established the Canadian Institutes of Health Research (CIHR) as part of its plan to make Canada one of the top research nations in the world. The CIHR is an arms-length organization that reports to the minister of health. Leading up to the establishment of the 13 institutes that compose the CIHR, a group of women’s health researchers and activists began lobbying for the establishment of a women’s health research institute and for the CIHR to integrate the health concerns of women into each of its institutes (Greaves et al., 1999). The result was the inclusion of an Institute of Gender and Health (IGH) that prioritizes a lifespan approach to women’s health (see Hankivsky and Etherington, chapter 2, this volume). Although the IGH does not have an explicitly feminist agenda, it arguably has increased the capacity of researchers to investigate questions related to gender and health, including attention to masculinity and men’s health. The IGH’s influence has been felt across all of the other 12 institutes, which require researchers to include statements about how they address sex- and gender-based analyses in their research as a condition of funding. Feminists also played a role in critiquing task force reports on health and mental health care for ignoring gender and other social inequities and urged governments to integrate a gender-and intersectionality-informed policy lens in their work (e.g., Armstrong et al., 2003). The CWHN (2007) took the federal government’s rollout of an anti-HPV vaccination program for girls and young women to task, urging watchfulness, a risk-benefit assessment of the vaccine, and more access to routine Pap tests to detect cervical cancer. On the other hand, many of the initiatives, like Studio D ( James, 1999) established during the feminist second wave saw their funding drop or stop as part of a neoliberal trend toward less social spending (Bashevkin, 1998; Burt & Mitchell, 1998; Morrow et al., 2004). Under Stephen Harper, Conservative Party leader and prime minister between 2006 and 2015, the federal government nearly decimated several long-standing feminist health-related organizations (Dobbin, 2010). Budget cuts to the Status of Women’s Program meant that dozens of women’s organizations were no longer eligible for financial support, including many women’s shelters (Dobbin, 2010). The Court Challenges program, lauded for its innovative promotion of human rights, was eliminated, as was funding for the Law Commission of Canada, which advised the federal government (Dobbin, 2010), and the

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National Child Care Program. Deep cuts to Statistics Canada hampered the collection of data on women and socioeconomic inequality and stalled progress on pay equity (Brodie & Baaker, 2008; Dobbin, 2010). These cutbacks occurred in tandem with other social and health care services restructuring in the 1990s and into the 2000s; for example, the regionalization of most health care systems in the country was accompanied by other changes like controlling public expenditures on health care,14 the closure of public hospitals and the shift to community and home-based care, and the adoption of private sector management practices in the public health systems (Armstrong et al., 2002). The implications were enormous, compromising women’s ability to access public health care services and lengthening wait times for medical services (Armstrong et al., 2002; Armstrong et al., 2004; Aronson & Neysmith, 1997; Cohen & Cohen, 2004). In some instances, Canadians began participating in the lucrative transnational medical tourism industry, going to the United States or countries in the global South that provide private medical care specifically for foreign patients (Connell, 2006; Labonté et al., 2013). The cutbacks coincided with a right-wing Christian backlash, brewing since the 1980s, mainly against abortion rights (Dubinsky, 1985). The 1988 Supreme Court’s landmark decision, R v. ­Morgentaler, struck down the 1969 abortion law, making Canada one of the very few nations without a federal law regulating abortion. As abortion services remain concentrated in urban centres, women from rural, northern, and Eastern Canada must journey long distances (Norman et  al., 2016; Rodgers, 2006; Sethna & Doull, 2013; Shaw, 2006). Legal change did not necessarily r­ esolve the problem of uneven abortion access, contravening the Canada Health Act’s five principles (­public administration, accessibility, comprehensiveness, universality, and portability), but they did animate a number of violent attacks against abortion clinics and abortion providers in the 1990s (Fainman & Penner, 2011). Additionally, feminist health and queer activists became mired in the medical, legal, and ethical fallout of the 2004 passage of the Assisted Human Reproduction Act, ­Q uebec’s constitutional challenge to the act, and a 2010 Supreme Court ruling that wrestled with the act’s relationship to federal and provincial jurisdiction (Deonandan & Rahman, 2011; Gruben & Cameron, 2014; Gruben et al., 2018). The act criminalized cloning and the commercialization of human gametes and gestational surrogacy. Although it prohibited discrimination based on sexual orientation or marital status, it was criticized for underserving those who did not fit the normative nuclear family stereotype (Marvel, 2016). As well, women of colour feminists panned the feminist focus on “choice” in terms of abortion and NRTs as narrow and white-identified and cautioned against the exploitation of transnational commercial gestational surrogacy arrangements (Deckha, 2015; Kang 2016; Thobani, 1992). Ecofeminism, a feature of the second wave, expanded in the third, fostering international coalitions for peace, human rights, and forest conservation, and linking chemical pollutants to breast cancer and birth defects (Shiva & Mies, 1993; Goldin Rosenberg, 1996). Ecofeminism has been criticized for universalizing women and nature and appropriating Indigenous culture, but white women and Indigenous women have joined together in acts of civil disobedience, like blocking logging roads, and developing transnational feminist analyses of colonialism, environmental destruction, and women’s reproductive health (Cook, 2007; Mohanty et al., 1991; Moore, 2015). Building similarly upon second-wave feminist efforts (Doucette, 1991; Driedger, 1989), disability

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theorizing and activism accelerated in the third wave (Chouinard, 1999; Garland-Thomson, 2002, 2005; Stienstra, 2003; Wendell, 1996). Feminist activists and disability scholars illuminated the specific forms of oppression experienced (Buettgen et al., 2018; Naidu et al., 2005), finding that women with disabilities are more vulnerable to violence, poverty, and unemployment, and that racialized and Indigenous people have higher rates of disabilities (Chenoweth, 1996; DAWN, 2013; Durst & Bluechardt, 2004; Erevelles & Minear, 2010; Gilborn, 2015; Sordi, 2011; Warner & Brown, 2012). For decades, Indigenous women had called attention to missing and murdered women; those ages 25–44 were five times as likely to die a violent death as other women (­Vancouver Police Department, 2011). The crisis was attributed to structural racism, state v­ iolence, colonial oppression, and, increasingly, economic marginalization (Peach & Ladner, 2010; Razack, 2016). In 2002 the Native ­ anada, ­KAIROS, Elizabeth Fry Women’s Association of Canada (NWAC), Amnesty International C ­ ­ oalition for Our Stolen Sisters, Society, and the Anglican Church of Canada formed the National C in order to raise awareness. In 2005 Sisters in Spirit was founded as a research, education, and policy program that tracks the names of murdered and missing women. A number of public art projects have also sprung up to commemorate Indigenous women, including the REDress P ­ roject (https:// www.facebook.com/REDressProject) and Walking with Our Sisters (http://walkingwithoursisters. ca/about). Murdered and missing Indigenous women have also been taken up by grassroots protest movements such as Idle No More,15 which sprang up to protest the legislative abuses of Indigenous treaty rights under the Harper government.

The Fourth Wave (2012– ) Among the most striking features of the feminist fourth wave is the use of social media technologies to discuss a range of local and global social justice issues, from violence against women to pay equity, LGBTQ2 and Indigenous rights, racism, and climate change (Abrahams, 2017; Chamberlain, 2017; Naples & Desai, 2002; Raby et al., 2018; Rivers, 2017; Williams, 2017). The proliferation of feminism through these glocal routes has raised the women’s movement profile but has also exaggerated debate about the body, including the co-optation of feminist discourses and the individualization of women’s issues. One salient example is the evolution of anti-abortion strategies. Other than demanding that abortion be defunded as a non-essential medical service, and introducing parliamentary motions or bills that appeal to fetal personhood, opponents of abortion target sex-selection abortion as harmful to racialized women (Bindy & Kang, 2016) and maintain that rejecting abortion is the best health care choice a woman can make, borrowing deliberately from the lexicon of the woman’s movement, women’s health movement, and pro-choice activism ( Johnstone, 2017; Saurette & Gordon, 2016). Another example is the 2019 passage of Quebec’s Bill 21 (Valiante, 2019). It prohibits public servants in positions of authority – primary and secondary school teachers, police officers, Crown prosecutors, and prison guards – from wearing religious symbols on the job, including the niqab, a face covering for Islamic women. The Fédération des femmes du Québec decried the bill for its sexism (Valiante, 2019), but some Quebec feminist o­ rganizations, like Pour les droits des femmes du Québec supported it, arguing that it enhances gender equality (Montpetit, 2019). This conflict

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pitted those feminists who see Bill 31 as part of the international rise of racism and Islamophobia against those who hold that religion and religious symbolism in any form are oppressive to women. What’s more, the growth of individualized self-empowerment discourses in the form of “sexy feminism”  in popular culture has spawned reactions by more radical fourth-wave feminists who insist that women should see their self-worth apart from their perceived “sexiness,” igniting controversy about women’s sexual self-presentation and the degree to which attention to ­self-empowerment obscures underlying structural power imbalances (Redfern & Aune, 2010). The prevalence of student psychological distress on university campuses – variously attributable to economic b ­ urdens, academic pressures, racism, sexism, and problematic engagement with social media technologies – tests concepts of self-empowerment (Flatt, 2013). Social media, being both individualist and communitarian, can empower and disempower women. Some studies show a correlation b ­ etween the use of social media technologies and poor self-image, anxiety, and depression, especially in youths (Sampasa-Kanyinga & Lewis, 2015). However, many feminists have mobilized social media technologies as health activist tools, building online health communities to provide emotional and informational support, notably for those living in social or geographical isolation (Hoffman-Goetz & Donelle, 2007). The rise of telemedicine might also assist women living in rural and remote areas, with online consultations and prescriptions for drugs like Mifegymiso, an abortion pill effective in the first trimester of pregnancy and approved by Health Canada in 2015 (considerably later than in other countries) (Gill & Norman, 2018). Significantly, young feminists have entered the online “manosphere” to confront cyber bullying, sexual harassment, and body shaming through “digital media activism,” although ironically, social media are also employed by men to exploit and stalk women (Bailey & Steeves, 2015; Mason & Magnet, 2012; Mendes et al., 2019) and, in the case of the incel community, to encourage misogyny and celebrate their worldwide terror attacks (Baele et al., 2019). Feminists have had some success in harnessing the power of social media technologies to highlight rape culture and the need to take sexual violence seriously (Rentschler, 2014). SlutWalk is a protest that went international after the first march took place in Toronto in 2011 in response to a police officer’s comment about rape (Redfern & Aune, 2010; Reger, 2014). Preceding the popular #MeToo campaign in the United States, the 2016 trial of CBC media icon Jian Ghomeshi for sexual assault spurred online testimonials from women who explained why they did not contact police after their assaults with #BeenRapedNeverReported (Coulling & Johnston, 2018). We Give Consent was the brainchild of two Toronto Grade 8 girls who petitioned online to place sexual consent into Ontario’s sex education curriculum (Ostroff, 2016). University students continue to play a key part in organizing social media campaigns that denounce campus sexual violence (Quinlan et al., 2017). Activism in the fourth wave has been set against the backdrop of changing government priorities. Justin Trudeau, leader of the Liberal Party, won the Canadian federal election in 2015 (and, subsequently, a second term in 2021), partly on a political platform that promised strong measures for women’s rights and reconciliation with Indigenous peoples. The Trudeau cabinet was praised for its racial diversity and gender parity; however, critics suggest that the government has disregarded the care work performed by women and has done little to advance universal childcare, pay equity, or Indigenous rights (McInturff, 2017; Oxfam

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Canada, 2017). However, in the wake of the COVID-19 pandemic, in 2021 the Liberal government announced a first early learning and childcare agreement designed to improve access to early learning and child care programs and services (see https://pm.gc.ca/en/news /news-releases/2021/07/08/canada-announces-historic-first-early-learning-and-child-care). Former prime minister Harper’s parliamentary apology on behalf of the federal government and Canadians for residential schools set the stage for the 2008 striking of the TRC to examine systemic residential school abuses. The TRC’s final report drew more public attention to missing and murdered Indigenous women. It recommended that the federal government set up a national inquiry on the matter (TRC, 2015). The inquiry also took violence against LGBTQ and TwoSpirit people into consideration. The final report from the inquiry stated that violations against Indigenous peoples amounted to an “often covert campaign of genocide” (National Inquiry into Missing and Murdered Indigenous Women and Girls, 2019, p. 5), a finding with which Trudeau eventually concurred (Tunney, 2019).

CHALLENGES FOR THE FUTURE The feminist fourth wave is still unfolding but it will likely become more intertwined with transnational activism, expressly in relation to environmental and racial injustices, and with the use of social media platforms. Concern over the climate crisis and its consequences for the health of the planet is escalating, spurred by environmental degradation, species extinction, extreme weather events, and resource extraction industries that continue to infringe upon Indigenous lands (Luby, 2020; ­Zywert  & Quilley, 2020). Much of the momentum to combat climate change has come from Indigenous activists in the global North and South, often connecting via social media to promote global environmental protection agendas (Duarte, 2017; Klein, 2019; Waldron 2018; ­Williams, 2018). Simultaneously, a Black Lives Matter movement originating in the United Sates has gone global, exposing on social media incontrovertible proof of police brutality against Black, ­Indigenous, and racialized individuals. This movement has shone a light on systemic racism, destructive colonial legacies, and the mainstreaming of right-wing nationalism and white supremacy. It has also fuelled discussions about reparations for slavery (Cole, 2020; Levine-Rasky, Kowalchuk, 2020; Lord Dalhousie Panel, 2019; UN, 2021). Similarly, social media have been crucial to publicizing the maltreatment of Indigenous peoples. The online dissemination of a graphic video taken by an Indigenous patient who recorded nursing staff at a Quebec hospital insulting her shortly before her death has led to calls for Indigenous-led health care services (Shingler, 2021). As well, following social media coverage of the discovery of unmarked graves that include the remains of hundreds of children on the grounds of former residential schools run by the Catholic Church, Indigenous activists have demanded that the federal government speed the implementation of the TRC recommendations and insisted upon an apology from Pope Francis (Austen & Bilefsky, 2021).16 Undoubtedly, the women’s health movement will be marked by the COVID-19 pandemic in ways we cannot as yet comprehend. The pandemic underscored almost immediately a pressurized public health care system, the racialization of the SARS-CoV-2 virus as Asian, and the vulnerability of specific bodies to viral infection, likely because of longstanding structural inequities rather

Historical and Contemporary Reflections on the Women’s Health Movement

than because of personal biological susceptibility alone. Initially, fatalities were concentrated among those connected to essential services, long-term-care homes, prisons, and the meat and agriculture sectors, thereby affecting mainly women, racialized peoples, and migrants (Flood et  al., 2020). Several women public health officials, including Dr. Teresa Tam, Canada’s chief medical ­officer, have received accolades for their frontline leadership in managing the pandemic (­Cherneski, 2020). However, prolonged lockdown periods mandated by public health officials to reduce the spread of COVID-19 have weighed heavily on women’s work-life balance and mental and physical health. Early data indicate that in addition to loss of income, food insecurity, and childcare responsibilities, domestic violence – dubbed the “shadow pandemic” – has placed women and girls at serious risk, particularly when faced with a lack of affordable housing options and the inadequacy of shelter services (Fahra & Schwann, 2020; Johnston et al., 2020; ­Mlambo-Ngcuka, 2020). Accelerated dependence on the Internet during lockdowns probably means that women will become even more reliant on it for health information, primary health care delivery by telemedicine, and even online mental health counselling (Mahal, 2020). On the one hand, these avenues could democratize health care for women who live in remote areas or have physical mobility issues. On the other, the availability and affordability of Internet services and technological devices plus privacy concerns are barriers to equitable access (Gratzer et al., 2020). Social media platforms that proved so useful to public health communications about rapidly developing vaccine protocols for COVID-19 also tell a cautionary tale. Fears about vaccines are not new (Biss, 2014). However, social media platforms have been used to disseminate misinformation about vaccines, including those for COVID-19, contributing to “vaccine hesitancy,” a phenomenon identified by the World Health Organization as one of the top 10 threats to global health (Puri et al., 2020). The women’s health movement has been based upon the work of feminists who reclaimed the centrality of the material body in Western thought and raised issues related to violence, poverty, disability, gender, class, and race as critical determinants of women’s health. Feminists still struggle with many of the same key issues that prompted the women’s health movement – the medicalization of women’s bodies, the failure of medical science to include consistently sex and gender as part of their analyses, and the implementation of health care policies by governments that fail to recognize adequately women’s roles as caregivers. Despite impressive evidence illustrating the tightly wound relationship between the biological and the social, women’s health advocates find themselves up against a medical system that is biomedical in focus and increasingly concentrated on genetics and medical technologies over the social context of health and well-being. Just how these considerations, along with neoliberal globalization and its negative effects on public health care systems, will continue to provoke the women’s health movement in the wake of the COVID-19 pandemic remains to be seen. Intersectionality can theoretically be used to counteract those negative effects. However, the integration of sex and gender variables into health research, analysis, and policy has always been slow (Runnels et al., 2014), and concerns have been raised about the loss of intersectionality’s critical feminist potential as it travels into different spaces and is influenced by neoliberalism (Puar, 2012; Salem, 2018). Furthermore, some critics suggest that intersectionality has ironically reified sex and gender differences and the subject position of white women (Puar, 2012). Other critics (e.g., Chow, 2006; Grosz, 1994; Haraway, 1989) have leveraged the work of the theorist Gilles Deleuze to declare that bodies are unstable “assemblages”

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that cannot be “seamlessly disaggregated into identity formations” (Puar, 2012, p. 56). As such, feminist analytic constructions for understanding structural forms of oppression and women’s bodies, health, and identities remain in flux.

DISCUSSION QUESTIONS 1 How and why has the women’s health movement sought to expand and complicate the definition of what is understood conventionally as “health”? 2 What links can be drawn between Western philosophical understandings of concepts like the “body” and women’s health? 3 How can history help us understand the ongoing debates related to reproductive choice and reproductive justice? 4 How do contemporary activist movements like Black Lives Matter and Idle no More contribute to feminist understandings of health? 5 What lessons can we learn from the ways in which COVID-19 disproportionately ­impacts people based on gender, race, class, and immigration status?

NOTES 1 Emily Murphy is known as one of “The Famous Five” – a group of Canadian women who, in 1927, launched the Persons Case, which stated that women could be “persons” under Canadian law and were eligible to sit in the Senate. The Supreme Court of Canada rejected the case, but it won upon appeal to the Judicial Committee of the British Privy Council (Prentice et al., 1988). Emily Murphy has subsequently been criticized for her anti-immigrant sentiments and her role in the Alberta Sexual ­Sterilization Act, which gave the province the power to sterilize people with intellectual disabilities and was disproportionately used against Indigenous and Métis women, single women, and other marginalized groups (Grekul, 2011). 2 The accuracy of the 1953 English translation by H. M. Parshley of The Second Sex has become the ­subject of much controversy. See Toril Moi. (2004). While we wait: Notes on the English translation of The Second Sex. In Emily R. Grosholz (Ed.), The Legacy of Simone de Beauvoir (pp. 37–68). Oxford ­University Press. 3 See also Indian Act and women’s status discrimination via Bill C31 and Bill C3. (2012, July 9). Working Effectively with Indigenous Peoples. https://www.ictinc.ca/indian-act-and-womens-status-discrimination -via-bill-c-31-bill-c-3 4 DES is diethylstilbestrol, a synthetic estrogen prescribed to women between 1938 and 1971 to prevent miscarriages and avoid other pregnancy problems. Children born to women exposed to DES have suffered from a range of problems including vaginal cancer in women and non-cancerous testicular growth in men. 5 This book was re-released up until 2011 in print and then online. There is now a website that continues its legacy, see https://www.ourbodiesourselves.org. 6 Thalidomide was a treatment for morning sickness that resulted in the birth of babies with severe damage to their limbs. Although thalidomide was pulled from the Canadian market in 1962, it is still used

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7 8 9 10 11 12

13 14 15 16

in developing countries as a treatment for leprosy and is being tested for a variety of medical uses in ­Canada and the United States, including in the treatment of AIDS. By 2005 CARAL was no longer operative, and other organizations like Abortion Rights Coalition of Canada/Coalition pour le Droit à l’Avortement au Canada, the National Abortion Rights Federation, and a reproductive health resource group, Canadians for Choice, were established. The first women’s shelter in the world was set up in London, England, in 1971 by Erin Pizzey. The “Sixties Scoop” refers to the practice of state-sanctioned child welfare agencies removing Indigenous children from their homes and families and placing them with non-Indigenous families (see Blackstock et al., 2004). Queer theory emerged in the 1990s and is attractive to feminists because of its focus on sex, sexual ­orientation, and gender identity. See the Trans Pulse website: http://transpulseproject.ca/about-us/project-history. For example, the Canadian Charter of Rights and Freedoms (1982); Setting the Stage for the Next ­Century: The Federal Plan for Gender Equality (1995), Canada Health Action: Building on the Legacy, ­Volume 1: The final report (1997), The Beijing Platform for Action, Report on the Fourth World Conference on Women (UN, 1995), and The Women’s Health Strategy (Health Canada, 1999). See the Women and Health Protection website: http://www.whp-apsf.ca/en/about.html. In 1995, the federal government substantially reduced federal transfers for health care, education, and social services. The result was cutbacks to health services; increased private payment like user fees, d ­ eductibles, and co-payments; and the de-listing of some health services by removing them from public coverage. See the Idle No More website: http://www.idlenomore.ca. While Indigenous leaders told the Canadian government in the 2015 TRC report that many children had died while attending state- and church-sanctioned residential schools, the first evidence of the widespread practice of these children being buried in unmarked graves was first put forth by the Tk’emlúps te Secwépemc First Nation in Kamloops, where the remains of 214 children buried at the former Kamloops Indian Residential School were discovered in May 2021. As of June 2021, ground-­ penetrating radar has located an additional 933 unmarked graves of Indigenous children in BC and ­Saskatchewan. See, for example, https://www.bbc.com/news/world-us-canada-57674682.

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CHAPTER FOUR

Elder Abuse as a Health Issue: Barriers Faced by Older Immigrant Women in Accessing Services Sepali Guruge and Atsuko Matsuoka

The population of older adults in Canada is increasing, and immigrants compose a significant proportion of this group. Given the growth in the population of older immigrants, researchers have begun to focus more on addressing their health. This chapter reviews the literature on the health of older immigrant women with a particular focus on elder abuse, which has emerged as a key public health concern in Canada. We incorporated elements from feminist intersectionality theory and the social determinants of health model, as well as the synergies of oppression model and the candidacy model, to explore issues related to access to services among older immigrant women experiencing elder abuse. We found that improving access to services will require targeted strategies that address the social determinants of health inequities. The findings will be beneficial for planning and implementing effective health promotion programs and policies. Older adults (65 years of age or older) are the fastest-growing age group in Canada. This trend is expected to continue over the next few decades, mainly because of a below-replacement fertility rate, increased life expectancy, and the aging of the baby boomers (Canadian Institute for Health Information, 2011). In 2011, an estimated five million Canadians were ages 65 or older, and this number is expected to double over the next 25 years. By 2050, about one in four Canadians will be 65 or over (Statistics Canada, 2011). Women outnumber men with age. For example, in 2011, 52 per cent of those ages 65–74 years were women, and 68 per cent of those ages 75–84 years were women (Statistics Canada, 2011). Immigrants compose a large proportion of the growing population of older adults in ­Canada. For example, from 2001 to 2006, approximately 30 per cent of the population ages 65–84 were immigrants. This proportion is even higher in major cities across Canada: 63 per cent, 51 per cent, and 38  per  cent of the populations in Toronto, Vancouver, and Montreal, respectively, were 65 or older (Turcotte & Schellenberg, 2007). Older immigrants to Canada come from various countries and cultural backgrounds. For example, as of 2016, most older immigrants in Canada came from Asia and the Pacific region (48.0 per cent), followed by Africa and the Middle East (29.2 per cent), E ­ urope (12.2 per cent), South and Central America (7.3 per cent), and the United

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States (2.8  per  cent) (Mandell et al., 2018). As a collective, immigrants are significantly older than their Canadian-born counterparts: the median age of the total immigrant population is 48.6, whereas the median age for the Canadian-born population is 41.2 (Statistics Canada, 2016a, 2016b). According to 2016 statistics, nearly two in three older immigrants who arrived in Canada between 2012 and 2016 were unable to speak either official language (Employment and Social Development Canada, 2018). The increase in the population of older adults has attracted attention from community leaders, health care professionals, researchers, administrators, and policymakers (e.g., Carefirst, 2002; ­Carstairs & Keon, 2009; Provincial Health Services Authority, 2011). Certain aspects of older adults’ health have received even more attention. For example, Butler-Jones (2010) identified elder abuse as a major Canadian public health issue in light of the growing number of older adults and the persistent ageism among professionals and the public. This chapter explores how older immigrant women experience access to services to address elder abuse, which can help increase resilience and reduce social isolation and vulnerability – all significant key measures to address elder abuse. We will begin by discussing the health of older immigrants in Canada, and older immigrant women’s health in particular, by applying elements of feminist intersectionality theory and the social determinants of health (SDH) model. We will explore barriers to accessing services by using the synergies of oppression model, and then by applying the candidacy model of eligibility for health care, we will examine access to services for older immigrant women experiencing elder abuse. The findings will demonstrate that improving older immigrant women’s access to services for elder abuse will require developing strategies to address the interactions between various SDH inequities faced by older immigrant women.

A SUMMARY OF THE CONCEPTUAL MODELS AND THE RELATIONSHIPS AMONG THEM This chapter uses several conceptual models to analyse older immigrant women’s access to, and use of, services to address elder abuse. Specifically, it incorporates elements of feminist intersectionality theory, as well as the SDH model, the synergies of oppression model, and the candidacy model. According to feminist intersectionality theory, individual and group health is the result of a variety of intersecting factors. It examines how “intersections of gender, race, ethnicity, class and other axes of difference have an impact on women’s health” (Guruge et al., 2008, p. 24). It also recognizes that interactions between the various dimensions of social identity that give rise to social inequities are embedded within broader systems of power, domination, and oppression (Guruge & Khanlou, 2004; Hankivsky, 2011; McGibbon 2009). The synergies of oppression model can help reveal oppression that arises out of intersecting dimensions of social identity and social inequities (­McGibbon & McPherson, 2011). SDH are the conditions in which people are born, grow, live, work, and age, including the health system (World Health Organization [WHO], 2008a). Income and income distribution, lack of access to education, sexism, and geographic isolation are all examples of SDH. These conditions are shaped by the distribution of money, power, and resources at global, national, and local levels, which are themselves influenced by policy choices (WHO, 2008a). The interaction

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of various SDH give rise to the synergies of oppression that feminist intersectionality theorists ­investigate (Guruge & Khanlou, 2004; Hankivsky, 2011; Hankivsky & ­Charistoffersen, 2008). Some scholars have demonstrated the importance of pre-and ­post-immigration factors, as well as the role of culture and ethnicity in immigrant integration and adaptation and their short- and longterm health (Guruge, 2007; Kinnon, 1999). McGibbon (2009) suggested that health i­ nequities can be described as intersections of three areas: the SDH as laid out in the ­Toronto ­Charter (­Raphael, 2004), “isms” (e.g., sexism, racism, and ableism) affecting the SDH, and g­ eographic or spatial ­contexts of oppression affecting the SDH. McGibbon and McPherson (2011) referred to such intersections as “synergies of oppression.” This chapter examines such synergies. The final conceptual model employed in this chapter is the candidacy model, according to which eligibility for health care services is determined neither by the individual seeking help nor the service provider, but rather by the interaction between the two. Dixon-Woods et al. (2006) proposed this model, and it has gained attention among scholars focusing on health, public, and social services. For example, Mckenzie et al. (2013) reported that the candidacy model is a useful analytical tool to explore public services. Candidacy refers to “the ways in which people’s eligibility for medical attention and intervention is jointly negotiated between individuals and health services. Candidacy is a dynamic and contingent process, constantly being defined and redefined through interactions between individuals and professionals, including how ‘cases’ are constructed” (Dixon-Woods et al., 2006, p. 7). The candidacy model is closely linked with the conceptual models presented above, because it acknowledges that access to health care is the result of numerous interacting SDH and that these interactions can create synergies of oppression that prevent individuals from accessing or adequately using health care services. The model is a useful tool for exploring the interrelated oppressions of abuse experienced by older immigrant women and can be used as a framework of engagement at the micro, meso, and macro levels to examine how intersecting oppressions emerge and how they can be addressed.

THE HEALTH OF OLDER IMMIGRANTS IN CANADA The term healthy immigrant effect is used to capture an interesting phenomenon: recent immigrants tend to be healthier than their Canadian-born counterparts, but over time this health status advantage decreases (Gee et al., 2004; Kinnon, 1999; Newbold & Danforth, 2003; Vang et al., 2015). Many researchers have attributed this decline to the adoption of mainstream Canadian beliefs, attitudes, and lifestyle behaviours (e.g., dietary changes, increased alcohol consumption) by ­immigrants, resulting in a convergence in health status between foreign- and Canadian-born populations (Ali, 2002; Chen et al., 1996; Hull, 1979; Perez, 2002; Zambrana et al., 1997, as cited in Gee et al., 2004). The synergies of oppression model can also be used to identify structural conditions as key influences. For example, Gee et al. (2004) found that unlike other age groups, older immigrants arriving in Canada may not be healthier than Canadian-born older adults. Immigration is stressful, and uprooting and resettlement processes are more difficult for older immigrants (Choudhry et al., 2002). Dunn and Dyck (2000) examined the relationship between time since immigration and health status in mid- to later-life individuals and suggested that “the most important antecedents

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of human health status are not medical care inputs and health behaviours (smoking, diet, exercise, etc.), but rather social and economic characteristics of individuals and populations” (p. 1573). Lai (2004) also noted that various adjustment challenges and sociocultural barriers affect the health of older immigrants in Canada. Inability to secure professional employment and a general downward social mobility, which has been attributed to a general devaluation of foreign credentials and work experience (Guo, 2013) – often linked with racism and discrimination – are among the numerous social-structural barriers affecting older immigrants’ health.

OLDER IMMIGRANT WOMEN’S HEALTH Older women represent a significant proportion of all international immigrants. They tend to be more vulnerable than their younger or male counterparts as a result of various factors, including gendered and ageist expectations, norms, and policies as well as a lack of information, opportunities, and rights in the countries of origin and destination. The effects of these inequalities on their health have been largely ignored in scholarly research, public policy, and health service design and practices. A recent scoping review (Guruge et al., 2015) of refereed health sciences literature published within the last 24 years revealed only 20 Canadian-based articles that focused on older immigrant women’s health. The findings suggest that there is a relationship between SDH inequities and health problems (Guruge et al., 2015). For example, several studies that focused on early detection of cancer and health outcomes revealed lower rates of mammography screening among older East Asian immigrant women in Canada (Sun et al., 2010) and lower screening rates of cervical cancer among older women from South Asia than among Canadian-born women (Lofters et al., 2010); these lower screening rates among older immigrant women are related to SDH inequities. ­English-language proficiency and the lack of language-specific services were identified as key predictors for colon and breast cancer screening among older Chinese women (Todd et al., 2011) and for regular breast and cervical cancer screening among older Vietnamese immigrant women (Donnelly, 2006). Research has also demonstrated the critical importance of examining power relationships with health care professionals, considering that limited official language proficiency already creates barriers to access to resources for health. Scholars including Choudhry et al. (2002), Donnelly (2006), and Todd et al. (2011) have suggested that the best way to address these power imbalances is to ­incorporate the perspectives and values of older immigrant women. Together, these findings highlight the importance of understanding and applying intersectionality, SDH, and synergies of oppression lenses, and the critical need to examine power relationships between health care professionals and older immigrant women in addressing barriers to accessing services for those experiencing abuse.

ELDER ABUSE AS A HEALTH ISSUE Abuse of older adults is defined as “a single or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust which causes harm or distress to an older person” (WHO, 2008b, p. 1). This definition includes physical, psychological, material, and

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sexual violence; mistreatment; isolation, abandonment, and social exclusion; violation of legal and medical rights; neglect; and deprivation of choices, decisions, status, finances, and respect. In other words, elder abuse is shaped by threats to power and resources among older individuals, as well as inequalities in the SDH. Elder abuse encompasses both intimate partner violence (IPV) (which may begin in, or continue into, older age) as well as other types of abuse noted above. It can take place in the home or other non-institutional, as well as various institutional, settings and contexts. This chapter focuses on abuse that takes place within the home. Few countries have implemented national reporting and monitoring systems to assess the prevalence of abuse of older adults. According to the WHO (2008b), the global prevalence rates of ­elder abuse vary from 1 to 35 per cent. Differences in rates may be due to reporting biases, variations in definitions, measurements, inclusion criteria, and sampling methods (Guruge, Tiwari, & Baty, 2010). According to WHO (2008b), elder abuse may be underreported by as much as 80 per cent. Additionally, women, including older women, experience violence and abuse at disproportionately higher rates than men worldwide (Montminy, 2005; Statistics Canada, 2011; Straka & Montminy, 2006, 2008; WHO, 2008b). According to Johnson (2006), both young and old experience abuse at the hands of someone known to them, but almost half of older victims are abused by a family member, compared to about 35  per  cent of their younger counterparts. While no prevalence rates are available for abuse of older immigrant women, Canadian research indicates that older immigrant women are subjected to emotional, physical, sexual, and financial abuse, as well as threats and controlling behaviour from their husbands, children, and children-in-law (e.g., Guruge & Kanthasamy, 2010; Tam & Neysmith, 2006; Tyyska et al., 2013; Walsh et al., 2007). Additionally, the levels of care, respect, and status for older women within the family often diminish after immigrating to Canada, largely because of changes in their level of dependency on their husbands, adult children, or children-inlaw who may have been in the country longer or have more proficiency in English and knowledge about Canadian society (Guruge & Kanthasamy, 2010; Ploeg et al., 2013; Tam & Neysmith, 2006; Walsh et al., 2007). Within this context, factors that are not usually considered forms of abuse, such as the use of silence (not talking to older individuals or ignoring them) (Tam & Neysmith, 2006), institutionalization, and the Canadian government’s sponsorship requirements (which make older sponsored immigrants more vulnerable to sponsors) (Koehn et al., 2010; Ploeg et al., 2013) can all have negative effects on older immigrant women. These factors also make it particularly problematic to estimate the prevalence of elder abuse in this population. The available literature about the health effects of elder abuse consistently reports profound effects on victims’ physical and mental health and quality of life (Dauvergne, 2003; Lachs et al., 1998; Spencer, 1999). Studies also report that abuse can lead to earlier mortality among older adults (Spencer, 1996, and exacerbate existing health problems (Beaulieu et al., 2003; Sinha, 2011). Older adults in general are substantially less physically resilient (e.g., older bones break more easily and take longer to heal), have less physical strength, and are less able to defend themselves compared with younger adults. Thus, physical abuse that might cause minor harm or injury among younger adults may lead to death or life-altering situations (e.g., disability or fractures requiring additional health and housing supports) among older adults. Financial abuse may reduce the ability of older adults to maintain their health with nutritious food and healthy activities or to seek timely

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treatment for health problems (Beaulieu et al., 2003; Spencer, 2010). Overall, abuse of older adults has significant effects on the individual, family, and community, and involves costs to the health care system, community services, and the justice system (Knig & Leembruggen-Kallberg, 2006). Gender differences appear in the rates, types, and experiences of elder abuse and its effects, as well as in the reporting of abuse. Within the family and home context, older women experience domestic abuse at a rate almost twice that of older men (Statistics Canada, 2011), which may ­reflect the influence of societal (macro-level) factors, such as patriarchy, at the family (micro) level (Beaulieu et al., 2003). In the context of IPV in old age, women are more at risk for physical assault by a spouse (Kosberg, 2007). Some research indicates that older women are more likely than older men to classify economic exploitation as a form of abuse (Beaulieu et al., 2003) and to classify psychological abuse as a severe form of abuse (Spencer, 2010). One important aspect of elder abuse among immigrant women is the post-migration context. Immigration affects social supports, gender roles, and socioeconomic status in the context of various other stressors, such as language differences, racism, and discrimination (Guruge, Khanlou, & Gastaldo, 2010; Tyyska et al., 2013). Changes and stresses following migration to a country such as Canada can lead to family conflict and can also influence whether families seek help from formal services (Guruge & Humphreys, 2009; Guruge & Khanlou, 2010; Guruge, Khanlou, & Gastaldo, 2010). Older immigrant women are faced with more disadvantages in the post-migration context, especially when they are sponsored through the Family Reunification program in Canada. Under the current policy, sponsors are financially responsible for their older family members (i.e., parents or grandparents) for 20 years, and sponsored older adults are not eligible to receive social assistance or federal benefits during the sponsorship period (­Citizenship and Immigration Canada, 2013). Such a socially constructed financial dependency limits older adults from securing adequate housing and health care support outside of families, preventing them from escaping abusive relationships. These conditions apply to all sponsored older adults, but the gendered ways in which these conditions are applied make older women even more vulnerable.

ACCESS TO SERVICES RELATED TO ELDER ABUSE BY OLDER IMMIGRANT WOMEN This section applies the candidacy model to explore elder abuse in terms of SDH inequities and synergies of oppression. The candidacy model includes seven dimensions: identification, navigation, permeability of services, appearances at health services, adjudications, offers and resistance, and local operating conditions.

Identification of Candidacy The identification of candidacy is “a process by which individuals come to view themselves as legitimate candidates for particular services” (Mckenzie et al., 2013, p. 809). For victims of elder abuse to access care and treatment, they must first realize that they are legitimate candidates for services and that they need and deserve attention, help, or intervention. However, research

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on elder abuse among older adult immigrants has revealed that many immigrants may not share mainstream definitions of elder abuse (e.g., Matsuoka et al., 2012/2013; Ploeg et al., 2013; WHO, 2008b). They may be more likely to use the term mistreatment instead of abuse. Older immigrants may not ­recognize abusive situations as instances of abuse or mistreatment at all. For example, what is considered financial exploitation according to mainstream definitions may be seen by older immigrants as sharing or as a necessary redistribution of income and other resources expected of family m ­ embers in a certain culture and community to nurture and maintain the family unit. ­Intergenerational transmission of resources (income, housing, knowledge, etc.) is an expected family norm. Such contributions to the family unit are gendered. Older immigrant women are particularly susceptible to financial exploitation, given that a lack of affordable childcare for grandchildren, coupled with economic necessity (e.g., both parents may have to maintain multiple, precarious jobs) and gendered norms, often means that grandmothers provide or are coerced into providing childcare and household labour. Both Le (1997) and Sanchez (1999) found that a woman’s social location within the family and the differences in expectations concerning priorities for the use of scarce family resources (e.g., grandchildren versus grandparents) can potentially create situations of mistreatment of older women. Because such situations of abuse are embedded within the ‘traditional’ family structure, older immigrant women may not recognize themselves as being legitimate candidates for services. To restate this in terms of synergies of oppression, definition of elder abuse is constructed on intersections of SDH based on immigrant older women’s status within their ­family structure and immigrant families’ positions within the hierarchical Canadian society. In addition to commonly recognized situations of abuse, such as blatant financial abuse (appropriation or exploitation of older adults’ pensions and other incomes or assets), physical abuse, verbal abuse, psychological abuse, and spiritual abuse (e.g., not being allowed to worship or attend services), scholars have identified a number of abusive behaviours and circumstances experienced by older adults that are not commonly recognized as abuse. For example, older adults may be subjected to the “silent treatment,” may be expected to babysit or take care of household chores, and may not be provided with appropriate diet or medical attention. Dong et al. (2011) and Yan et al., (2002) found that Chinese older adults tend to report mistreatment or abuse only if it is criminal in nature. While such understandings are not necessarily unique to older immigrants, and there is diversity within communities, older immigrants in general have a tendency to underreport such instances. Additionally, older immigrant women may be especially prone to underreporting their experiences of abuse owing to gendered expectations of tolerance and maintaining family harmony. Many older immigrants, men and women, want to avoid bringing shame to their families to maintain or ensure their family’s good social standing (Guruge, Kanthasamy, et al., 2010; Park, 2006; Tyyska et al., 2013) and to protect them from being subjected to racism in criminal and legal systems (Tam & Neysmith, 2006). However, concerns about avoiding bringing shame to the family may be more heightened among older immigrant women. Kanagaratnam et al. (2012) found that women tend to see themselves as being responsible for maintaining family unity and that this deters them from seeking professional services. Finally, older immigrant women may fail to identify their candidacy because they are ashamed of the abuse or think they deserve it as a mother or wife. Shame is a common phenomenon among victims of abuse and is not unique to older immigrant women. Intersections of a range of factors that are specific to immigrant status and gendered status in the family and community may prevent

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older immigrant women from recognizing their candidacy. When shame and self-blame are coupled with fears of deportation, loss of sponsorship, isolation, institutionalization, abandonment, and family breakups (Guruge & Kanthasamy, 2010), as well as racism and discrimination, older immigrant women may be prevented from identifying themselves as candidates for interventions. Even when they are aware that they are being mistreated, they are often discouraged from identifying themselves as candidates for social and health services (Guruge & Kanthasamy, 2010).

Navigation of Services After older immigrant women identify as candidates, they must navigate the system, which can be difficult. Navigation is defined as “knowing how to make contact with appropriate services in relation to identified candidacy” (Mckenzie et al., 2013, p. 809). The first step in navigating the health care system is to identify available services. A study involving Tamil women in Canada (including participants over 65 years of age) who had experienced IPV and sought support identified various barriers to navigating services (Guruge & Humphreys, 2009). These included lack of knowledge about services, lack of information available in their own language, lack of ability to navigate information systems, lack of access to Internet services, lack of proficiency in an official language, lack of income, lack of transportation, and geographical isolation. These barriers intersect with one a­ nother and thereby exacerbate the problem. For example, being geographically isolated (e.g., living in a rural community) can make it difficult to attend health care appointments; it may also make it difficult to access the Internet or attend language classes to enable better navigation. Other factors make it difficult for both older immigrant women and their Canadian-born counterparts to navigate health care services. For example, time constraints for those involved in paid or unpaid (e.g., childcare) work can limit time to find appropriate services, and cold ­Canadian winters can limit mobility. Also, Canadian radio and television programs generally do not provide linguistically and culturally appropriate and age-specific information about health, health promotion, illness, care, treatment, and available services (Guruge, 2007; Guruge & ­Kanthasamy, 2010). While some programs and services are directed at older adults from various ethnocultural groups (e.g., ­social gatherings, educational activities, conferences), these tend to be mainly available in large urban centres and to be offered by agencies as short-term projects. Long-term government funding for these services is rare (Guruge et al., 2008). Together, these structural inequalities and other intersections of “isms” present hidden – and uneven – barriers to navigation. They are more pronounced for certain groups of older immigrant women who may be primary caregivers and childcare providers, have limited English language skills, and be precariously employed and underpaid.

Permeability of Services Older women, especially older immigrant women, who have made contact with appropriate services are likely to experience issues related to permeability. Dixon-Woods et al. (2006) defined permeability as “the ease with which people can use services ... the extent to which people feel

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comfortable with the organisational values of the service” (p. 12). They identified services needing referrals, having restricted access hours, or requiring appointments as examples of services with “low permeability” for socioeconomically disadvantaged people. With regard to situations of domestic abuse, Mckenzie et al. (2013) wrote, “The notion of candidacy and citizenship whereby one’s rights to services are related to one’s citizenship status ... [is] such that women seeking asylum have no recourse to public funds” (p. 816). Similar findings were reported by Guruge and Humphreys (2009). The commonly proposed solution to elder abuse and neglect within the family is to move out of a residence shared with the abuser (often a family member); however, a lack of available and appropriate housing and financial support means that permeability is low for those in this situation. This is especially so for older immigrant women. For example, Matsuoka et al. (2012/2013) identified a lack of agency responsiveness and outreach to older immigrant women because of limited resources to communicate and work with them. While ethno-specific services can increase the permeability of services (Mutta et al., 2004), the structural inequalities in funding for such agencies limit the permeability and long-term ­maintenance of services.

Appearing at Services (and Asserting Candidacy) To obtain services, older immigrant women must first assert their candidacy during a meeting with a service provider. A study involving older Vietnamese immigrants in the United States revealed that the participants tended to present with insomnia or back pain instead of claiming abuse and neglect, “because the abuse can be subtle, in addition to the elder’s attempt to conceal it, it is not always easy to detect” (Le, 1997, p. 59). A study with Chinese Canadian older adults reported that service providers encountered a minimal to sub-minimal level of care by families, which meets basic needs but denies access to familiar food or Chinese television, for example (Carefirst, 2002). These cannot be considered as abuse and needing intervention as their situations meet basic needs (Carefirst, 2002), unless older immigrant women themselves assert so. Older individuals must interact with health care professionals to access services. However, one Canadian study about the abuse of marginalized older adults (women and men) found that reporting abuse (i.e., claiming candidacy) can be futile: few options are available, and health care professionals may not always take older adults seriously; ageism is rampant in the health care system, so older individuals may feel “belittled or ignored” (Walsh et al., 2011, p. 27). As discussed above, even appearing at services involves a complex set of decisions, so service providers need to both encourage and facilitate access to services. With regard to older immigrant women, a key requirement is paying attention to power dynamics during interactions and how these may impede access and use of services. Even asking health care professionals to listen presents a considerable challenge, especially for those who may not be able to assert their case in health care professionals’ language, and in the context of increasing commodification of health care and social services and aging bodies. The system can actually work to preserve abusive situations (Walsh et al., 2011) when older immigrant women face synergies of oppression mediated through social, economic, and political discourses that maintain age, race, gender, ability, and class-power differentials.

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Adjudications by Professionals Adjudication refers to “the judgments and decisions made by professionals which allow or inhibit continued progression of candidacy” (Dixon-Woods et al., 2006, p. 12). Mckenzie et al. (2013) noted that real candidacy is measured against what professionals consider an ideal candidate; for example, in a situation of abuse, an ideal candidate is one who leaves and does not return, despite pressure, to the abuser or the abusive home context. However, this ideal reflects the values held by professionals and may not be congruent with the values of older immigrant women. Matsuoka et al. (2012/2013) identified the need to train professionals in reflective anti-oppressive practices to help them work beyond stereotypes and misconceptions about the families of older immigrant women (e.g., that immigrant families are respectful and take care of older family members, that it is their culture, and that elder abuse does not take place in these communities). Understanding racism is also a necessary component of understanding abuse of immigrant older adults (Tam & Neysmith, 2006; Tyyska, et al., 2013). Adjudications by health care professionals can perpetuate institutional racism and abuse, rather than helping older immigrant women. Forbat (2004) also questioned the current interpersonal-relation-based definition of elder abuse, ­arguing for the inclusion of institutional (systemic) abuse and oppression in the definition, ­especially in ­relation to older immigrant women. In other words, understanding abuse of immigrant older women requires considering intersectionality and “isms” (e.g., racism, sexism, ageism).

Offers of and Resistance to Services Some scholars have found that older individuals may refuse offers of services, so non-use of services is not always a result of them not being offered (Dixon-Woods et al., 2006). For example, many older people decline to press charges of abuse after the police have laid them (Sinha, 2011). Tam and Neysmith (2006) found that older immigrant Chinese women may decline services or refuse to lay charges because they prefer to protect their families “from the racial violence and discrimination experienced outside the family than from abuse that occurs from within it” (pp. 142–143). The authors explained that this may reflect “fear of re-victimization, based on known or anticipated experiences of systemic racism in the social, health, or criminal justice systems” (Tam & Neysmith, 2006, p. 143).

Local Operating Conditions and Production of Candidacy Accessing and using services are not simply determined by “encounters between users and professionals  ... but always happens within specific, localized cultural, organizational and political contexts” (Mckenzie et al., 2013, p. 819). Since 2013, a sponsor must provide financial support for 20 years for those who come to Canada under the parent and grandparent sponsorship agreement. This means an older immigrant with deteriorating health may need assisted living, a special care home, or skilled nursing care, but if the sponsoring family cannot afford such care and are told that they will be required to cover the costs, they will likely keep their family member at home. This not only results in inequitable access to health care but also leads to family stress and the potential

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for passive neglect (Koehn et al., 2010). Other social factors can delay seeking professional help, such as patriarchy (Ahmad et al., 2009; MacKinnon, 1983). Ageism in Canada sets a tone for local operating conditions combined with the current neo-liberal ideology in Canada, which promotes individualism and supports policies that promote family responsibilities before state responsibilities. These make it more difficult for older immigrant women to access and use services. By applying the candidacy model when reviewing access to services for elder abuse for immigrant women, it becomes clear that the candidacy journey has a cyclical nature (Mckenzie et al., 2013, p. 820). Micro-level service-user/service-provider relationships lie at the centre of a set of mutually reinforcing contextual meso- and macro-level layers: “It is the interactions between these layers which help to explain the social construction of the ‘ideal candidate,’ the socio-political and economic patterning of depressed or refuted candidacy as well as that which remains unresolved” (Mckenzie et al., 2013, p. 820). Analyses incorporating elements of feminist intersectional theory and the “isms” also reveal synergies of oppression.

DISCUSSION Application of the candidacy model, along with elements of intersectionality theory, helps clarify access to services for elder abuse in terms of SDH inequities. The analysis presented above suggests that improving access to services will require strategies targeting various aspects of SDH inequities as identified by the synergies of oppression model. For example, at the identification stage, it is important to examine how strategies directed at intersections of identity (the “isms’” can improve awareness of what abuse actually is and the context within which it takes place – not only for service users but also for service providers. It is also important to explore social identity in combination with intersections of SDH. For example, if the silent treatment is to be included as a form of elder abuse, then it is assessed in relation to social exclusion (an intersection of SDH) and age or (dis)ability (intersections of SDH identity). Older immigrant women face even more barriers to accessing services than younger immigrant women and Canadian-born women. For example, some are involuntarily taking care of grandchildren and household chores, or not getting medical attention, because of power relationships and a lack of funds caused by family sponsorship agreements (set forth by the federal government) and lack of income owing to, for example, ageism, sexism, and racism. They may also be unwilling to identify these situations as abusive, and these situational factors should be addressed in the identification stage. At the navigation and permeability stage, it is important to examine not only the intersections of SDH but also the intersections of social identities and geographies. For example, improving navigation will require addressing time constraints, paid/unpaid work, and public transportation, in relation to age, gender, and immigration status, as well as the individual’s/family’s geographical location. At the permeability stage, it is important to improve agency responsiveness and outreach of health and other services (in intersections of SDH) in light of language, culture, social class, and immigration status (intersections of identity), as well as where people are geographically located (intersections of geographies). At both navigation and permeability stages, the synergy of SDH is closely linked with structural issues – for example, a lack of policy to redistribute funds and promote coordination.

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At the appearing at services, adjudication, and offer and resistance stages, it is important to ­explore intersections of SDH and intersections of social identities. Access to services at the appearing at services stage can be improved by being open to hearing and recognizing the different ways in which abuse is expressed and understood, and by being open and flexible to provide services that might help alleviate the situation. For example, older immigrant women might request seniors’ housing (indicating intersections of age and housing) instead of disclosing abuse or mistreatment because of concerns for family and fear of further oppression (outcomes of intersections of the “isms”). To improve access at the adjudication and offer and resistance stage, providers must overcome misconceptions and stereotypes about who is deserving of service and/or the ideal candidate. For example, when they are working with older immigrant women who do not want to leave an abusive situation or refuse to press charges against the abuser, service providers should still provide as many resources/supports as possible to improve their situations. In other words, the solution is not about the individual but about the family or the collective (addressing intersections of social identities). To promote such solutions, policy directions need to be less individualistic and instead focus on addressing the intersections of SDH. In terms of local operating conditions, it is important to address intersections of SDH, intersections of social identity, and geographies. At the local operating conditions stage, especially promoting candidacy, service providers must apply elements of intersectional theory to explore how larger systemic forces affect access. Policy directions should move beyond a particular sector, such as immigration, income security, education, and health and social services, to overcome the compartmentalized approach to services/solutions and critically address the patriarchy and ideologies within the neoliberal context that places responsibility on the family. This review of access and use of services related to elder abuse, based on the synergies of oppression model and the candidacy model has revealed the critical need to examine the complex relationships between synergies of oppressions. Additionally, policies and programs should address these factors. For example, in contrast to the WHO definition of elder abuse as the result of interpersonal relationships (WHO, 2008b), our analysis, which focused on the home context, has revealed that relationships that cause harm or distress are located within community and state contexts, and that access to prevention/intervention services is strongly influenced by structural relationships. Therefore, policies and programs for elder abuse must address these serious structural inequalities.

CONCLUSION Neoliberalism emphasizes individual responsibility over societal or community responsibilities and generally leads to reduced funding for social services. Within such a context, promoting elements from intersectionality theory and the synergies of oppression model within policy and program development is vital to improve older immigrant women’s access to prevention and intervention services related to elder abuse. This chapter explored the health of older immigrant women as it relates to elder abuse and their access to and use of services related to elder abuse. The analysis presented in this chapter has demonstrated that complex intersections of SDH influence each stage of candidacy to access services. This indicates helping professionals need to critically reflect on whether their action or inaction, and the social context where they provide services, in fact enables what older immigrant women identify as mistreatment/abuse/acceptable and thus maintain

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intersectional systems of oppression. Policies and services must encourage older immigrant women’s access to services – to neglect to do so would clearly be a form of oppression. Older immigrant women deserve to be treated with respect and dignity.

DISCUSSION QUESTIONS 1 What makes elder abuse a health issue? 2 How can the dimensions of the candidacy model inform our understanding of the ­impacts of COVID-19 on older immigrant women who face abuse? 3 How do the “synergies of oppressions” influence impacts of COVID-19 on older ­immigrant women who face abuse? 4 What are possible strategies for each dimension to counter these intersectional ­oppressions faced by older immigrant women experiencing elder abuse? 5 What can service providers, service organizations (including hospitals), and communities and societies do to address elder abuse? More importantly, what is your role and what steps can you take to reduce the barriers faced by older immigrant women in accessing services to address elder abuse? What policy changes can you recommend?

REFERENCES Ahmad, F., Driver, N., McNally, M. J., & Stewart, D. E. (2009). “Why doesn’t she seek help for partner abuse?” An exploratory study with South Asian immigrant women. Social Science & Medicine, 69(4), 613–622. https://doi.org/10.1016/j.socscimed.2009.06.011 Ali, J. (2002). Mental health of Canada’s immigrants. Health Reports, 13(Suppl.), 1-11. https://www150 .statcan.gc.ca/n1/en/pub/82-003-s/2002001/pdf/82-003-s2002006-eng.pdf?st=YDL4DG9M Beaulieu, M., Gordon, R., & Spencer, C. (2003). An environmental scan of abuse and neglect of older adults in later life in Canada: What’s working and why. Federal/Provincial/territorial Committee of Officials (Seniors). https://www.seniorscouncil.net/uploads/files/For_Service_Providers/Senior%20Abuse%20 Enviromental%20Scan.pdf Butler-Jones, D. (2010). The chief public health officer’s report on the state of public health in Canada: Growing older – Adding life to years. Public Health Agency of Canada. https://www.canada.ca/en/public-health /corporate/publications/chief-public-health-officer-reports-state-public-health-canada/annual-report -on-state-public-health-canada-2010.html Canadian Institute for Health Information. (2011). Health care in Canada, 2011: A focus on seniors and aging. https://www.homecareontario.ca/docs/default-source/publications-mo/hcic_2011_seniors_report_en.pdf Carefirst. (2002). In disguise: Elder abuse and neglect in the Chinese community. Carefirst Seniors and Community Services Association. Carstairs, S., & Keon, W. J. (2009). Special senate committee on aging final report – Canada’s aging population: seizing the opportunity. https://sencanada.ca/content/sen/Committee/402/agei/rep/AgingFinalReport-e.pdf Chen, J., Wilkins, R., & Ng, E. (1996). Health expectancy by immigrant status, 1986 and 1991. Health Reports-Statistics Canada, 8, 29–38. https://www150.statcan.gc.ca/n1/en/catalogue/82-003-X19960033016

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Elder Abuse as a Health Issue Statistics Canada. (2016b). Census profile, 2016 census. https://www12.statcan.gc.ca/census-recensement /2016/dp-pd/prof/details/Page.cfm?Lang=E&Geo1=PR&Code1=35&Geo2=&Code2=&Data=Count &SearchText=Ontario&SearchType=Begins&SearchPR=01&B1=All&GeoLevel=PR&GeoCode=35 Straka, S. M., & Montminy, L. (2006). Responding to the needs of older women experiencing domestic violence. Violence Against Women, 12(3), 251–267. https://doi.org/10.1177/1077801206286221 Straka, S. M., & Montminy, L. (2008). Family violence: Through the lens of power and control. Journal of Emotional Abuse, 8(3), 255–279. https://doi.org/10.1080/10926790802262499 Sun, Z., Xiong, H., Kearney, A., Zhang, J., Liu, W., Huang, G., & Wang, P. P. (2010). Breast cancer screening among Asian immigrant women in Canada. Cancer Epidemiology, 34(1), 73–78. https://doi.org/10.1016 /j.canep.2009.12.001 Tam, S., & Neysmith, S. (2006). Disrespect and isolation: Elder abuse in Chinese communities. Canadian Journal on Aging, 25(2), 141–151. https://doi.org/10.1353/cja.2006.0043 Todd, L., Harvey, E., & Hoffman-Goetz, L. (2011). Predicting breast and colon cancer screening among English-as-a-second-language older Chinese immigrant women to Canada. Journal of Cancer Education, 26(1), 161–169. https://doi.org/10.1007/s13187-010-0141-7 Turcotte, M., & Schellenberg, G. (2007). A portrait of seniors in Canada (Catalogue No. 89-519-XIE). Statistics Canada. http://publications.gc.ca/Collection/Statcan/89-519-X/89-519-XIE2006001.pdf Tyyska, V., Dinshaw, F. M., Redmond, C., & Gomes, F. (2013). “Where we have come and are now trapped”: Views of victims and service providers on abuse of older adults in Tamil and Punjabi families. Canadian Ethnic Studies, 44(3), 59–77. https://doi.org/10.1353/ces.2013.0004 Vang, Z., Sigouin, J., Flenon, A., & Gagnon, A. (2015). The healthy immigrant effect in Canada: A systematic review. Population Change and Lifecourse Strategic Knowledge Cluster Discussion Paper Series, 4. Walsh, C. A., Olson, J. L., Ploeg, J., Lohfeld, L., & MacMillan, H. L. (2011). Elder abuse and oppression: Voices of marginalized elders. Journal of Elder Abuse & Neglect, 23(1), 17–42. https://doi.org/10.1080 /08946566.2011.534705 Walsh, C. A., Ploeg, J., Lohfeld, L., Horne, J., MacMillan, H., & Lai, D. (2007). Violence across the lifespan: Interconnections among forms of abuse as described by marginalized Canadian elders and their care-givers.  British Journal of Social Work, 37(3), 491–514. https://doi.org/10.1093/bjsw/bcm022 World Health Organization. (2008a). Closing the gap in a generation: Health equity through action on the social determinants of health: Final report. Commission on Social Determinants of Health. http://www.who.int /social_determinants/thecommission/finalreport/en/ World Health Organization. (2008b). A global response to elder abuse & neglect: Building primary health care capacity to deal with the problem worldwide: Main report. http://www.who.int/ageing/publications/ELDER _DocAugust08.pdf Yan, E., So-Kum Tang, C., & Yeung, D. (2002). No safe haven: A review on elder abuse in Chinese families. Trauma Violence and Abuse, 3(3), 167–180. https://doi.org/10.1177/15248380020033001 Zambrana, R. E., Scrimshaw, S. C., Collins, N., & Dunkel-Schetter, C. (1997). Prenatal health behaviors and psychosocial risk factors in pregnant women of Mexican origin: the role of acculturation. American Journal of Public Health, 87(6), 1022–1026. https://doi.org/10.2105/AJPH.87.6.1022

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CHAPTER FIVE

All Our Relations: Indigenous Women’s Health in Canada Billie Allan and Janet Smylie

In this chapter we apply an Indigenous relationality lens to Indigenous women’s health theory, policy, and practice in the lands currently known as Canada. This relationality lens is by definition decolonizing and critical of unauthorized, externally imposed theory, policy, and practice. We aim to respect, demonstrate, and support the ongoing application of Indigenous knowledge(s) and practices in promoting and revitalizing the health and well-being of First Nations, Inuit, and Métis women’s health and well-being. We begin by articulating the importance of telling our own stories as ­Indigenous peoples and describing the foundational notion of relationality as it applies to knowledge and practices of Indigenous health broadly and to Indigenous women’s health specifically. This includes the need to acknowledge our respective social locations and experiences and how they fit within the much broader landscape of First Nations, Inuit, and Métis worldviews. We then briefly examine the relationship between colonization and Indigenous women’s health and well-being; the ways in which Indigenous women have both embodied and resisted colonial policies and practices; and the implications for the current and future state of Indigenous women’s health. The revitalization of I­ ndigenous midwifery is presented as an exemplar to demonstrate how Indigenous women in Canada continue to lead themselves and their families, communities, and nations to health and well-being. The importance of Indigenous women’s contributions to the revitalization of individual, family, and community health is relevant well beyond the domains of Indigenous health. The health knowledge and practices of Indigenous women, which include innovative programs and services, offer significant knowledge contributions for the transformation of mainstream Canadian health care systems and professional health training programs to better meet the health needs of all Canadians. With respect to terminology, we apply the term Indigenous to recognize the many globally ­diverse nations of peoples who share continuities of kinlines and land-ties pre-dating ­European colonization and the rights inherent to this legacy. The terms First Nations, Inuit, and ­Métis ­recognize and assert the unique rights, interests, and circumstances of these distinction-based groups, who are Indigenous to the lands now known as Canada. Aboriginal is used sparingly in this chapter to reflect the language used in legislation and programming, or the wording of authors

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we have engaged with. Where possible we share specific, nation-based, or localized examples to demonstrate the distinct contexts and diverse approaches of First Nations, Inuit, and Métis women and their respective communities, settlements, and nations.

TELLING OUR OWN STORIES Fundamentally, the story of Indigenous women’s health in Canada needs to be framed in our own visions and told through our own voices. This act of reclaiming and revitalizing knowledge about our health and well-being is in fact an act of healthfulness itself. Framing and describing ­Indigenous women’s health through Indigenous perspectives underscores our agency, capacity, and leadership, and disrupts racist stereotypes and pathologizing discourses that often employ our health disparities as evidence of our inability to care for ourselves (Fiske & Browne, 2006; O’Neil et al., 1998). It challenges the reality that the stories of Indigenous women are still much more commonly told by others, particularly in academia and public media, and centres our Indigenous right to ­self-determination. In the words of scholar and Grandmother Marlene Brant Castellano (2004): “Fundamental to the exercise of self-determination is the right of peoples to construct knowledge in accordance with self-determined definitions of what is real and what is valuable” (p. 102). This chapter is not intended to homogenize or speak for all Indigenous women. We represent only two voices among the millions of Indigenous women’s voices across Turtle Island and around the world that require space and freedom for expression and agency. In keeping with the relational approach detailed below, we speak from what we know and have experienced as one Anishinaabe and one Cree-Métis woman, both of whom identify as Two-Spirit yet each of us on our own unique and specific life path and each with our own web of relations, which have intersected for the purposes of writing this chapter. What we know and share represents but two small pieces of a very large and complex puzzle. We describe what we perceive to be underlying themes and ­patterns that are shared by some, but certainly not all, Indigenous women. We do not aim to represent the broad and diverse interests and experiences of Indigenous women, but rather share some of our current understandings of the landscape of Indigenous women’s health from our perspectives as helpers (in  social work and medicine, respectively) and as knowledge gatherers (researchers). When examples are clearly distant from our own knowledge and experiences, we have attempted, where possible, to directly reference the narratives of Indigenous women who have lived knowledge and experience of the specific Indigenous context being referenced. In recognition of our specific ­inability to satisfactorily represent Inuit women, we additionally sought out review and feedback from Inuit women scholars and understand the implicit responsibility to advocate for ­Inuit-specific, Inuit-led scholarship moving forward. More generally, we anticipate and welcome Indigenous knowledge and experiences that differ from what we have shared. Indigenous individuals, communities, and nations have always held a rich and respected diversity of values, beliefs, knowledge, and skills. The web of relationality as we perceive it is limitless in its ability to accommodate knowledge and practice – be it similar or different. There are complex protocols built into many Indigenous societies that support the linkage of diverse ideas and perspectives in ways that allow the retention of integrity while at the same time contributing to the

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collective. In the words of Elder Maria Campbell (as cited in Smylie et al., 2016): “There is no such thing as no culture, story, language – it’s not lost – it’s out there and everyone has a piece of it ... when we put the pieces together at first the puzzle does not make sense, but eventually it will, we will rebuild it together” (p. 17). We draw heavily on the work of our many teachers, including our kin past, present, and future; the Elders, Indigenous Knowledge Keepers, and Indigenous community members who have shared with us; the broader circle of community and academic mentors who have taken us under their wing; the lands on which we were born and raised and those on which we have had the gift to be a guest; the plants and animals we share these lands with; and the grandmothers and grandfathers of the spirit world and all their helpers.

ALL MY RELATIONS: INDIGENOUS RELATIONALITY AS A FOUNDATIONAL APPROACH TO UNDERSTANDING INDIGENOUS WOMEN’S HEALTH The Context Our health as Indigenous women is inextricably held in our relations: our relations to self; to each other and our families, communities, and nations; and to our Ancestors and the little faces yet to come. Our health is held in our relations to the lands that sustain us and to the waters, plants, and animals of these lands. Our health has further been shaped by our relations to s­ettlers and the processes of colonization that have and continue to affect our families and nations. The policies and practices of colonization have enormously impacted our ways of knowing, being, and doing, including our understandings and practices related to identity, citizenship, and nationhood; our ­relationship to the land; our traditional governance structures; and our understandings of ­gender and sexuality. Colonialism has also impacted our relationships with each other as ­Indigenous ­peoples (Bombay et al., 2014; Bourgeois, 2020). Moreover, the colonial agenda has informed what is considered knowledge and what knowledge is considered valid, resulting in the marginalization and denigration of Indigenous knowledge systems, including Indigenous health knowledge (­ Adelson, 2005; Ahenakew, 2011; Cunningham, 2009; Reading, 2013). Western, biomedical ­approaches to health have been critiqued for their emphasis on pathology, illness, disease, deficits, and individual health behaviours (Cunningham, 2009; King et al., 2009). This largely lies in contrast to I­ ndigenous approaches, which emphasize well-being, interconnectedness, and interrelatedness and favour ­collectivist approaches that view the health of the individual as deeply connected to that of the f­ amily, community, and nation (King et al., 2009; Walters & Simoni, 2002). There is a ­growing common ground between dominant health and public health discourses and I­ ndigenous approaches with the advent of socioecological frameworks, such as the social ­determinants of health and the ­Ottawa Charter for Health Promotion (World Health Organization [WHO], 1986), which mirror ­Indigenous health knowledge frameworks (Graham & Stamler, 2010), and the convergence of these in the emergent literature on Indigenous determinants of health, notably and importantly, led by Indigenous scholars (see, for example, Greenwood & de Leeuw, 2012; Greenwood et al., 2015; Reading, 2009; Reading & Wien, 2009; Smylie, 2009).

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The role of colonization as a fundamental determinant of Indigenous health has been extensively documented and described both domestically (Czyzewski, 2011; Greenwood & de Leeuw, 2012; Greenwood et al., 2015; Reading & Wien, 2009; Smylie, 2009) and globally (Gracey & King, 2009; King et al., 2009; Mowbray, 2007). The necessity and importance of transforming what is “known” or understood about Indigenous women’s health requires more than an understanding of the impacts of colonization. It requires acknowledgement and use of the tremendous wealth of health knowledge and practices held by Indigenous women not only in our historical, pre-contact experiences, but in the here and now. The incorporation of decolonizing and anti-colonial theoretical frameworks into the curriculum of health professional, health research, and social service training programs is necessary to interrupting views of Indigenous women’s health that fail to account for the ways in which current disparities in health status, social determinants of health, and health care access have been shaped by historical and persisting social and economic exclusion, violence, sexism, and racism. Such frameworks play a key role in making visible the impact of colonization in the lives, health, and well-being of Indigenous peoples, and in uplifting, revitalizing, restoring, and centring the role of Indigenous ways of knowing, being, and doing (see for example, Bartlett et al., 2007; Dei & Asgharzadeh, 2001; Clark, 2013, 2016a, 2016b; Smylie et al., 2009). They also challenge oversimplified and/or distorted understandings of Indigenous knowledge and practice. Relationality emerged as a key underlying framework in our community-based consultations regarding urban Indigenous reproductive, maternity. and family health assessment. In our efforts to identify meaningful and relevant indicators, we have been encouraged by our Indigenous health service provider research partners, the Seventh Generation Midwives Toronto, to identify ways of gathering information regarding relationships with self, relationships with care providers, familial relationships, relationships to culture and cultural resources, relationships to community, and relationships to land and environment (Smylie et al., 2013). This work, along with the growing body of decolonizing and anti-colonial Indigenous scholarship, has nurtured our emerging lens of Indigenous relationality, which we will now describe.

Conceptualizing the Lens of Indigenous Relationality Our notions of relationality recognize the interconnections between all things embodied in the phrase “All my relations” or, offered collectively, “All our relations.” In the context of Indigenous women’s health, relationality acknowledges that our health is not separate from that of our families, communities, or nations, nor from our environment, histories, or visions for the future. For example, for many Indigenous people(s), understandings of infant health are embedded within the context of the entire lifecycle so that an assessment of the health needs of infants is foundationally linked to the health of grandparents. Understanding health with a focus on relationships between elements can initially ­appear to be in tension with an approach that compartmentalizes elements into discrete c­ ategories (i.e., biomedical approaches to body systems) and age groups, resulting in medical specialties that focus on a particular system (e.g. cardiology) or age group (e.g., pediatrics, geriatrics). However, the emergence in health sciences of more complex models of health, such as the holistic WHO definition of health1 or the life cycle approach to population health begins to bridge these gaps.

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Relationality not only includes the interconnectedness and interrelatedness of all worldly things but also encompasses the metaphysical universe, which is not seen as distinct from the secular. There is an innate sacredness in and subsequent respect for everyday things. Take, for example, our relationship to water; we require water to sustain our lives; our bodies are substantially made of water, and we are carried in and birth through the waters of our mothers or lifegivers. For the authors, our own Anishinaabe and Cree traditions and ceremonies remind us both of the sacredness of water, as well as its very practical requirement for our sustenance. So important is our need for and relationship to water that the United Nations Committee on Social, Economic and Cultural Rights and the United Nations General Assembly have both recognized water as a human right. But how are we in relation to water on a daily basis? How do our daily activities contribute to ensuring that we will have clean and safe water, and that we will sustain and protect our waters for those generations yet to come? Do we attend to the ways in which Canadian society is constructed that necessitate degradation of this sacred life source? For example, the mass movement of goods on our water ways, or the ways in which new energy technologies, including fracking, damage local water sources (Ernst, 2013; Osborn et al., 2011) and are implicated in the development of illness and disease (Huseman & Short, 2012; ­McDermott-Levy et al., 2013). Relationality also encourages and supports our awareness and ability to hold the tension of recognizing how our lives, stories, and well-being as Indigenous women are both distinct and interconnected. It encourages us as Indigenous women to honour the magnificent diversity of our identities, histories, languages, geographies, and ways of knowing and being; to recognize the beauty and transformative power of the knowledge we carry; and to understand how this power is heightened through our relations with one another. It emphasizes the importance of understanding our specific local geo-social contexts in order to understand our health and wellbeing. Indigenous relational understandings of health do not view the health of women as separate from that of men, children, or Elders, or from their families, communities, and nations. At the same time, the inextricable ties between the health of Indigenous women and men are not restricted to, or a simple re-inscription of, heteronormativity and the gender binary. This is demonstrated in the revitalization of diverse Two-Spirit teachings across many nations and communities that are pulling forward ways of knowing, being, and doing in relation to ­pre-colonial Indigenous understandings of gender and sexuality, as well as building on the knowledge and lived experiences of contemporary Two-Spirit peoples (Evans-Campbell et al., 2007; Hunt, 2016; Sparrow, 2018; Wilson, 2013). The revitalization of these teachings and efforts to better understand and address the health needs of Two-Spirit peoples elucidate the complexity of the interconnectedness and interrelatedness of the health of Indigenous peoples of all genders and the importance of using Indigenous worldviews to understand Indigenous health needs and challenges. Moreover, these teachings remind us that the health and w ­ ell-being of Two-Spirit peoples are not separate from that of our siblings, parents, or caregivers, aunties, uncles, or grandparents, nor from that of our partners, children, or grandchildren. Two-Spirit is used here as a “basket term” to hold space for the diverse Indigenous ways of understanding, naming, and embodying gender and sexuality beyond the imposition of the gender binary and heteronormativity.

Indigenous Women’s Health in Canada

Our intention in applying the relationality lens described above is to interrupt problematic portrayals of Indigenous women and our health and well-being by insisting that our lives, knowledge, and practices are understood in context. Specifically, it insists upon understanding the health of Indigenous women in the context of (a) our past, present and our future; (b) our relations with our families, communities, and nations; and (c) Canadian policy practices and the social ills of contemporary Canadian society, including colonialism, racism, sexism, classism, ableism, homophobia, and transphobia. In this way we hope to challenge pathologizing discourses that incorrectly attribute the causes of health and social inequities solely to the Indigenous women and girls who experience them rather than examining the root determinants of these inequities, including the political, economic, and social contexts of Indigenous health in Canada broadly and Indigenous women’s health specifically. Equally, employing a relationality lens forces a deeper memory of who and how we are, a recognition that the stories of our peoples and our health and well-being do not begin within colonization but instead long precede it. How does this relational lens connect to the broader focus on intersectionality in this text? We aim for our relationality lens to walk in theoretical sisterhood with the scholarship of ­Natalie Clark (2013, 2016a, 2016b), whose work in advancing Red intersectionality and Indigenous intersectional-based policy analysis (IIBPA) aligns with ours in its emphasis on the importance of an anti-colonial analysis of the impact of colonial violence on the lives of Indigenous girls, women, and peoples more broadly, including an understanding of policy as colonial violence. F ­ urther alignments with Clark’s (2013, 2016a, 2016b) intersectional theorizing include the situating of ­individual experiences within the context of family and community histories; the application of (w)holistic frameworks of health that reflect the diversity of Indigenous health knowledges and traditions; and the centring of the agency, resistance, and self-determination of Indigenous women and girls not only in response to colonial violence but in the reclamation and resurgence of our well-being. We also stand in the light of the scholarship of Kimberlé Crenshaw (1989, 1991), a Black feminist legal scholar who coined the term intersectionality as a way to articulate the uneven distribution of in/equality and to contextualize the violence and oppression faced by Black women. Intersectionality illustrates “where power comes and collides, where it interlocks and intersects” (“Kimberlé Crenshaw on Intersectionality,” 2017, para 5), making visible “the way in which various forms of inequality often operate together and exacerbate each other” (Crenshaw as cited in Steinmetz, 2020, para. 3). We recognize that Indigenous women’s lives are shaped by a multitude of intersections of systems of structural violence including but not limited to racism, sexism, ableism, classism, homophobia, and transphobia. At the same time, we recognize that these systems of oppression were and remain critical operating systems for settler colonialism to justify domination in the name of securing access to land and normalize the exploitation of resources and uneven accrual of wealth, opportunity, and freedom. Like Clark (2016a, 2016b), for us this means employing intersectionality in a manner that refuses separation of the violence and inequities experienced by Indigenous women from, for example, the violence enacted on the lands through pipeline and dam construction, environmental degradation through both illegal and state-sanctioned toxic dumping, and vile methods of exploitation of natural resources such as fracking and monocropping. It requires recognition that no amount of equity work fostered through an intersectional lens is truly decolonizing

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unless it addresses matters of land, Indigenous sovereignty and our collective responsibilities to the world of relations (all our relations) that exists beyond humans and human interactions. At the nexus of intersectionality and an Indigenous relational approach to Indigenous women’s health lies the hard work of excavating truths about how colonial systems of harm and oppression have come to live in our own families, communities, and nations such that we will be able to recognize all of our relations and refuse to enact these harms upon ourselves and each other. Readers are likewise invited into this work to consider how the stories they have been told about themselves, Indigenous women, and Indigenous health inform their interactions with the knowledge shared within this chapter and the stories they themselves will tell as a result.

ALL OUR RELATIONS: UNDERSTANDING WHO WE ARE AND WHERE WE ARE  FROM Indigenous women living in what is now known as Canada represent tremendously diverse ­nations and traditions; we carry within us the memories of our ancestors and dreams of our f­ uture. ­Indigenous women have been and continue to be health leaders, Knowledge Keepers and vision keepers, protecting and ensuring the health and well-being of our families, communities, and ­nations (­Anderson, 2008), even if these contributions are commonly obscured by persistent societal devaluation and misunderstandings. Indigenous women and Indigenous peoples2 as a whole represent the youngest and fastestgrowing population in Canada (Arriagata, 2016; Statistics Canada, 2018). According to the ­National Household Survey, approximately 1 in 19 women in Canada is Indigenous (Statistics Canada, 2019a), although any Indigenous population estimates based in Statistics Canada census data should be understood as an undercount.3 Nearly half (42 per cent) of the Indigenous female-identified population is composed of children and youth under the age of 25, of which an estimated 16 per cent are ages 15–24 (Statistics Canada, 2019b) and approximately 26 per cent are ages 14 and under (Statistics Canada, 2019c). The history of Canada is commonly told as starting with the arrival of European settlers, completely discounting the thousands of years of existence and diverse histories of Indigenous peoples before these events. Our lifeways, knowledge, and governance systems were sophisticated, diverse, and complex; indeed, the linguistic diversity of the Indigenous peoples of the Americas, if one considers root language density, was ten-fold that of Eurasia before the arrival of Europeans (Nettle, 1999). A multitude of Indigenous histories exist, reflecting the heterogeneity of experiences among and between Inuit, First Nations, and Métis peoples; this includes less frequently told histories of family-making among Indigenous and African diasporic communities (Royer-Burkett, 2019) and Indigenous and Asian communities (Yoshizawa, 2016). Despite the diversity of our histories, the roles and respect of all Indigenous women have been significantly impacted by colonization. A fuller picture of the historic and contemporary contexts and realities of Indigenous women and peoples lies beyond the scope of this chapter and can be explored in further depth in additional readings. We have tried to present as much contextualizing information as possible to locate our

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discussion of Indigenous women’s health within the web of all our relations and the broader social determinants of our health.

COLONIZATION AS A SOCIAL DETERMINANT OF INDIGENOUS WOMEN’S HEALTH To better understand the current realities of Indigenous women’s lives and the ways in which these realities impact and shape our health and well-being, it is necessary to examine our relations with settlers and colonization. Colonization has been defined as “the act of settling in a place and establishing political control over it and the Indigenous peoples that live there” (Oxford Dictionaries, n.d.). In Canada, colonization is commonly framed as a historic, integrated, and monolithic event. In actuality, colonial policies and practices have unfolded over hundreds of years since the arrival of the first European settlers and continue to be actively upheld and implemented to this day. For example, the Indian Act still defines who the federal government considers to be an “Indian” and continues to control Indigenous territories despite more than 500 outstanding Indigenous land claims to these territories (Indian Act, RSC 1985; Standing Committee on Indigenous and Northern Affairs, 2017). Thousands of specific policies are intended to control Indigenous peoples, with wide ranging impacts and diverse jurisdictional and temporal purview. These policies share the colonial goals of appropriating and economically exploiting Indigenous lands and gaining ­political control over Indigenous peoples. The practices have historically included forced relocation, the outlawing of Indigenous cultural practices, legally enforced abduction of Indigenous children to residential schools, mass apprehension and transracial adoption of Indigenous children by child welfare agents, and purposeful economic control and deprivation. Contemporarily, the control of Indigenous life in so-called Canada is enacted in many forms including continued invasive child welfare intervention, over-policing and under-protection by law enforcement evident in the disproportionate rates of incarceration of Indigenous peoples (Government of Canada, 2013), and the generally apathetic systems-level and political response to the epidemic rates of missing and murdered Indigenous women and violence against Indigenous women (Amnesty International, 2004; Canadian Feminist Alliance for International Action, 2003). The structural violence and social challenges faced by Indigenous women are mirrored in the lives of Indigenous girls who, for example, accounted for 60 per cent of young women incarcerated in provincial and territorial facilities in 2016–17, more than doubling the rate of incarceration of Indigenous girls in 2006–07 (29 per cent) (Malakieh, 2018). Colonial policies, past and present, have been ineffective in undermining the unique and diverse social values of Indigenous peoples and our desires to be recognized as distinct and self-determined nations. Despite this remarkable resistance, the direct and indirect impacts on the health determinants and health status of Indigenous women have unfortunately been persistent and pervasive. As Indigenous scholars, one of our Elders, Grandmother Maria Campbell, has challenged us to specifically name and examine the multiple and complex threads of colonial policy rather than refer to colonization generically. It is in the examination of each specific colonial insult and its impacts

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that the roots of resistance, reconciliation, and restitution lie. While we are limited by the scope of this chapter in this task, in this section we will describe some of the key ways in which specific colonial policies have impacted the roles, health, well-being, and livelihood of First Nations, Inuit, and Métis women and their families, communities, and nations.

Undermining the Leadership of Indigenous Women through Imposed Patriarchal Policies Before contact, Indigenous women were socially, politically, and economically powerful actors and key decision makers in matters of family, governance, and relationship to land (Anderson, 2008; Boyer, 2006; LaRoque, 1994; National Inquiry into Missing and Murdered Indigenous Women and Girls, 2019; Walters & Simoni, 2002). The valuing of and respect for the knowledge and roles of Indigenous women were systematically undermined through the process of colonization, which imported patriarchal practices embedded in European and Christian worldviews, values, and norms (Boyer, 2006; National Inquiry into Missing and Murdered Indigenous Women and Girls, 2019; Wesley-Esquimaux, 2009). Undermining the roles and respect of Indigenous women is a critical and pervasive element of colonial policies and practices (Allan, 2013; Armstrong, 1996; Boyer, 2006; Wesley-Esquimaux, 2009). This was enacted through the creation and perpetuation of racist, sexist stereotypes and the institutionalization of policies and practices that curtailed ­Indigenous women’s leadership and participation in governance and decision making. From fur traders and treaty makers who refused to deal with women (Boyer, 2006; Stevenson, 2011) to the sexist provisions of the Indian Act that prevented women from participating in the imposed ­political structures of Band Councils, Indigenous women have faced intentional and systematic political, economic, and social exclusion.

Ruptured Relations: Residential Schools and Invasive Child Welfare Policies and Practices The roles of women as lifegivers, caregivers, and keepers and conduits of traditional knowledge for future generations was disrupted, first by the advent of residential schools and then through invasive child welfare practices that continue to result in the mass removal of Indigenous children from their families and communities (Clark, 2016a; Hanson, 2009; Northern Ontario Women’s Services Outreach & Partnership Enhancement, 2011). There has been extensive documentation of the physical, emotional, mental, sexual, and spiritual abuses experienced by vast numbers of Indigenous children who attended state-sanctioned, church-run residential school for more than 100 years (see, for example, Blondin-Perrin, 2009; Dion Stout & Kipling, 2003; Knockwood & Thomas, 1992; Miller, 1996; Royal Commission on Aboriginal Peoples, 1996). Most recently, this has included a tremendous undertaking by the Truth and Reconciliation Commission of Canada to gather oral histories of survivors and to share these in an attempt to transform relationships ­between Indigenous and non-Indigenous peoples in Canada by promoting a greater awareness of the devastating, intergenerational effects of residential schooling on Indigenous families, communities, and nations (Truth and Reconciliation Commission of Canada, 2015a). At this particular

Indigenous Women’s Health in Canada

moment, we are witnessing a stark reality about Canada’s truth and reconciliation efforts as many non-Indigenous Canadians express shock and moral outrage in response to the revelation of ­unmarked graves surrounding residentials schools from coast to coast. For many Indigenous peoples, these graves do not represent shock or surprise but rather affirmation of the painful truth survivors have spoken of or silently suffered with across lifetimes and generations. We offer prayers of love and respect for every survivor who was told they wouldn’t be believed and for every survivor who wasn’t. We lovingly acknowledge all of the little ones being uncovered as their remains are rematriated to their homelands and their spirits honoured by the families, communities, and nations from which they were stolen. The abuses suffered by those who survived residential schools impacted the immediate health and well-being of generations of Indigenous children and that of their families and communities, creating a massive rupture in parenting practices and the intergenerational transmission of knowledge. As residential schools began to close,4 invasive child welfare practices began to ravage Indigenous communities with mass apprehensions of children beginning in the late 1950s. Between 1960 and 1970, approximately one in three Indigenous children was apprehended into the custody of child welfare authorities in what is now known as the Sixties Scoop (Fournier & Crey, 1997; Sinclair, 2004, 2007). The continual removal of Indigenous children to present day is often referred to as the millennial or millennium scoop and more recently has been powerfully and poignantly described as the Indigenous child removal system, a system in urgent need of dismantling (Sinclair, 2017). Child welfare surveillance and intervention remain a central concern in the lives of Indigenous families: in 2016, Indigenous children represented 7.7 per cent of the child population of Canada and 52.2 per cent of all children currently in the care of child welfare authorities (Government of Canada, 2019). The role and impact of child welfare has been so profound in the lives of Indigenous peoples that it has, in fact, been asserted as a social determinant of Indigenous health (Tait et al., 2013). Removal from the care of one’s parents to foster care or transracial adoption has been linked to homelessness and incarceration of Indigenous youth and adults (Baskin, 2007; Latimer & Foss, 2004; Sinclair, 2007; Saewyc et al., 2008). The Cedar Project, a cohort study of Indigenous youth who use substances5 in Vancouver and Prince George, British Columbia, has identified removal from parental care to be associated with increased likelihood of having ever self-harmed, having seriously considered or attempted suicide, and having been diagnosed with a mental health disorder or hospitalized for a mental health issue (Clarkson, 2009). For participants using injection drugs, removal from parental care was also associated with injection with used needles, overdose, and self-harm (Clarkson, 2009). It is a painful challenge to try to report some of the harms associated with child welfare involvement without also contributing to a stigmatizing image of Indigenous children and youth in care; we recognize the limitations of deficit- or problem-based data in that they do not simultaneously emphasize the agency, knowledge, gifts, strengths, beauty, and humanity of Indigenous children, youth, and adults who have survived child welfare involvement. Nor do they adequately honour the stories of those for whom child welfare involvement was a helpful or positive experience. However, we also recognize that these data were gathered with, and much of it by, Indigenous peoples with the aim of illustrating the impact of the Indigenous child removal system on the lives of those it touches, an aim that we share.

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Despite shared realities of historic and contemporary colonial policies and practices, such as child welfare, it is critical to hold space for the diversity of experiences of Indigenous peoples and, in the context of this chapter, the diversity among Indigenous women specifically.

Acknowledging the Distinct Context of Inuit Women’s Health The challenging circumstances facing Inuit women and their health are numerous; however, literature examining these context and processes through which health is affected is practically non-existent. In addition, there is little if any literature examining the positive aspects of women’s health including their strengths, community involvement, family, relationships, wisdom and knowledge. (Healey & Meadows, 2007, p. 211)

To understand the contemporary health challenges and needs of Inuit women, it is imperative to carefully and critically examine the context and histories of Inuit in the lands currently known as Canada. The particular attention to the unique context of Inuit women’s health here is twofold: (a) because this chapter is predominantly influenced and framed by the First Nations and Métis worldviews of the authors, and (b) the unique needs and circumstances of Inuit women are too often subsumed under the broader topic of “Aboriginal women’s health,” where there tends to be a substantial focus on First Nations and Métis women and approaches to health and well-being (Healey & Meadows, 2007). There are notable challenges in fostering meaningful understandings of Inuit histories and contemporary realities without critical reflection on the ways in which Inuit and their ways of knowing and doing have been framed by outsiders using Western epistemologies. For example, there should be considerable caution in interacting with the accounts of missionaries and anthropologists and trying to understand the degree to which they accounted for their Western worldviews and attendant values and beliefs regarding such things as religion, gender norms and ideals, marriage, sex, and sexuality. Likewise, it is necessary to attend to how language informs epistemology and ontology and to account for the ways in which discussions of Inuit life (and Indigenous life generally) in the English language can be understood as a continued and often unmarked insertion of Western norms and values in framing and assessing Indigenous ways of knowing, being, and doing. For ­example, discussions of gendered relations in an Inuit context may be construed through Westernized notions of feminism or patriarchy readily associated with the English word gender in the West, rather than through Inuit traditional knowledge and ways of being, failing to account for the complexity and flexibility in Inuit understandings of and practices relating to gender (see, for example, Williamson, 2006).6 Indeed, Inuit understandings of gendered roles have been described as viewing gender as pliable (accounting for the change of gender or the holding of multiple genders), situational, and deeply associated with traditional naming practices (Moore, 2008; Tagalik, 2009/2010; Trott, 2006; Williamson, 2006). We recognize that our own attempt to respectfully contextualize the uniqueness of Inuit women’s health and well-being is limited not only by our positionality but by the use of English and, further, that the “good intentions” of aiming to resist the homogenization of Indigenous women’s health does not erase or mitigate the limitations inherent in our efforts.

Indigenous Women’s Health in Canada

We assert that it is necessary to distinguish the specificity of Inuit histories, ways of knowing and doing, and contemporary realities (Healey & Meadows, 2007) while simultaneously seeking to understand the common colonial determinants of health that have created and sustained a poorer level of health among First Nations, Inuit, and Métis peoples. Finally, decolonizing knowledge about Inuit health requires drawing on literature and resources developed by Inuit themselves or, where knowledge has been gathered by outsiders, to prioritize the use of research that centres Inuit voices and has been demonstrably driven, shaped, and governed by Inuit. While we have made our best efforts to locate and centre the work and voices of Inuit authors, we also struggled with the volume of research about rather than by or with Inuit peoples. We sought the review and feedback of Inuit women scholars as a means of relational accountability and in recognition of the limitations of our knowledge and perspectives. While Inuit experienced colonial incursion over a prolonged period by whalers, fur traders, missionaries, government, and the Royal Canadian Mounted Police7 (Inuit Tapiriit Kanatami, 1999; National Inquiry into Missing and Murdered Indigenous Women and Girls, 2019), mass disruption of traditional roles, knowledge, and practices resulting from colonization occurred rapidly over a relatively short period of time (Healey, 2008, 2016). In the 1950s, as the federal government instituted a program of resettlement, Inuit peoples’ relationship to the land, and their traditional lifeways, self-sufficiency, and well-being were dramatically impacted through a shift from a migratory lifestyle based in small camps of family groupings generally composed of a maximum of 40 to 50 people, to permanent settlements of hundreds and in some cases thousands of people (Billson, 2006). Federal government interference in Inuit life was further compounded in the 1950s and 1960s by policies enabling the removal of Inuit children from their families and communities to residential schools (Healey, 2016). Before contact and resettlement, Inuit lifeways relied upon a balance of gendered roles, collaboration, and social cohesion within and among families (Kuniliusie, 2015). The gendering of roles and responsibilities has been described as pliable and reflective of this. For example, the extremely skilled sewing of Inuit women created housing8 and clothing that ensured the safety and survival of their families, with well-made clothing essential for Inuit men to survive while hunting. The successful hunting by Inuit men ensured food security, the provision of animal hides and furs for clothing and lodging, and seal and caribou oil to feed the qulliq.9 All roles were critical to the collective survival of Inuit. Billson (2006) describes the gendered impact of resettlement in the Pangnirtung area when Inuit women were able to bring their sewing tools and ulus (traditional knives) with them while Inuit men were told they must leave behind their dog teams, sleds, harpoons, and other hunting tools as they could not fit on the RCMP planes. While Inuit women were able to hold onto tools needed to continue traditional practices, Inuit men faced a shift to motorized boats and rifles – new hunting tools that immediately presented significant financial barriers to being able to continue traditional hunting practices (Billson, 2006). The undoing of a hunting culture and a sudden shift to settlement life dramatically affected the balance of Inuit family roles, with serious impact on health and well-being. The transition to settlement life, the introduction of formal schooling (and removal to residential schools), a wage economy, drugs and alcohol, and imposed restrictions and quotas on hunting and fishing have contributed to poor health outcomes through the creation of poverty, food insecurity, decreased consumption of country foods,10 increased violence, ruptures in intergenerational language and

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knowledge transmission, and an undermining of traditional roles, social structures, and norms (Healey, 2008; Inuit Tapiriit Kanatami, 2014; Pauktuutit Inuit Women of Canada, 2006, 2010). These changes were further aggravated by additional colonial interference through practices of medical relocation to health care facilities in the south for treatment of tuberculosis (causing protracted family separations or loss) (National Inquiry into Missing and Murdered Indigenous Women and Girls, 2019; Qikiqtani Inuit Association, 2010) and the systematic slaughter of qimmit (Inuit sled dogs)11 (Brennan, 2012). Moreover, environmental degradation and resource e­ xtraction have created health risks through the contamination of food and water sources (Dewailly et al., 2001; Healey & Meadows, 2007; Inuit Tapiriit Kanatami, 2014). In addition to the alarming issue of contamination, environmental violence and climate change can also impact physical and mental health through further disruption of traditional lifeways (including hunting and harvesting of country foods) as a result of decreased sea ice and snow cover (Inuit Tapiriit Kanatami, 2014). Inuit face serious health challenges, including cancer, the second-leading cause of death among Inuit, who also experience the highest rates of lung and colorectal cancer in Canada (Government of Nunavut, 2008; National Collaborating Centre for Aboriginal Health, 2012). In 2016, the ­recorded rate of tuberculosis among Inuit was more than 300 times that of non-Indigenous people born in Canada (Government of Canada, 2018). Inuit have also faced elevated rates of suicide in comparison to data available for Canada as a whole; in 2018, across the four regions of Inuit Nunangat, the rate of suicide ranged from 5 to 25 times the national average (Inuit ­Tapiriit ­Kanatami, 2018). In response, Inuit peoples have and continue to restore their health and ­well-being through efforts to strengthen self-determination, including the successful settlement of four Inuit land claims and efforts to create Inuit models of governance within imposed Western models of government (Price, 2007), and the protection and revitalization of Inuktitut, Inuit Qaujimajatuqangit (Inuit way of knowing) and traditional Inuit practices (Inuit Language Protection Act, SNu 2008; Kusugak, 2013; Putulik, 2015; Tulloch et al., 2013). Inuit women have experienced role expansion, with greater participation in formal education and the wage economy, while also tending to carry the primary or sole responsibility for children and family well-being (Billson, 2006; Morgan, 2008). They have also made and continue to make tremendous advances and contributions through political and educational leadership and community organizing (McComber & Partridge, 2010; Walton & O’Leary, 2015). At the same time, they experience a gendered impact of colonization and resettlement, including elevated risk and rates of violence associated with poverty, overcrowded housing, the introduction of alcohol and substances in Inuit communities and ruptures in traditional Inuit lifeways and gender roles (Healey & Meadows, 2007; Pauktuutit Inuit Women of Canada, 2019). While violence is a threat to the health and well-being of all Inuit, it disproportionately impacts Inuit girls and women (Pauktuutit Inuit Women of Canada, 2019). Notably, Inuit women are also leaders in calling for awareness and developing responses to family and community violence: Pauktuutit, the national Inuit women’s organization, has continually advocated for and supported comprehensive efforts to address high rates of abuse and violence against Inuit women and children for the 35 years since its inception (Pauktuutit Inuit Women of Canada, 2005, 2019). Sexual and reproductive health are also key areas of concern for Inuit women who face elevated rates of sexually transmitted infections and cervical cancer, as well as continued structural and policy barriers to local, culturally safe reproductive and

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maternal/child health care despite transformative advances in revitalizing Inuit midwifery (Healey & Meadows, 2007; Wilson et al., 2013). The work of Inuit midwives as a model of excellence in Indigenous women’s health leadership is further discussed later in this chapter. While this section has presented a brief snapshot of the context of Inuit women’s health, the imperative of attending to diversity previously articulated in this chapter remains. For ­example, ­although we have largely focused on situating Inuit women’s health in the context of Inuit ­Nunangat, a growing number of Inuit are living outside these territories, with a notable increase in the population of those living in urban centres (including Ottawa-Gatineau, Edmonton, and Montreal) (Statistics Canada, 2017). Such shifts in where Inuit live requires concurrent changes in urban and Indigenous health research, policy, and practice to ensure that the needs, realities, and concerns of Inuit are addressed. An exciting example of the shifting awareness in urban health care may be found in recent research with urban Inuit in Ottawa that helped to inform the development of the Akausivik Inuit Family Health Team (Smylie et al., 2018). Inuit-specific services like the Akausivik and Inuit-specific cultural safety training are needed in urban environments (Smylie et al., 2018) to address what Pauktuutit (2017) describes as the burden of “double cultural marginalization” faced by urban Inuit women when accessing mainstream and Indigenous services that exclusively serve First Nations and Métis women or fail to acknowledge and address the unique historical and cultural context of Inuit women (p. 25). In the following section, we address the state of Indigenous women’s health as a whole, emphasizing shared determinants of health and health outcomes among First Nations, Inuit, and Métis women.

Indigenous Women’s Health and the Embodied Impact of Colonial Policies and Practices Racism and sexism were fundamental structures in the colonization of what is now known as North America and of colonial policies and practices in Canada. Indigenous women continue to experience the intersection of racism and sexism in their lives in the form of violence, pain, and political, economic, and social exclusion, manifested in a greater likelihood of experiencing poverty, marginal housing, underemployment, food insecurity, and extraordinary rates of incarceration and child welfare surveillance and apprehension (Bourassa et al., 2005; Government of Canada, 2019; Hanson, 2011; Lambden et al., 2006; Malakieh, 2018; O’Donnell & Wallace, 2014; ­Statistics ­Canada, 2013a; Wesley, 2012; Willows et al., 2009). The embodied impacts of colonization are reflected in shorter life expectancy, higher infant mortality rates, and the severity of the health disparities Indigenous women face, including disproportionate rates of obesity, hypertension, cardiovascular disease, type 2 and gestational diabetes, arthritis, cervical cancer, and suicide (Atlantic Centre of Excellence for Women’s Health, 2009; Ghosh & Gomes, 2011; Grace, 2003; Halseth, 2013; Health Canada, 2003; Kirmayer et al., 2007; Smylie et al., 2010). Indigenous women face epidemic threats to their health on multiple fronts, including violence and HIV/AIDS. Not only are Indigenous women in Canada more likely to be victims of homicide than their non-Indigenous counterparts (Statistics Canada, 2013b), but they also report higher rates of spousal and non-spousal violence and far more severe forms of violence, including being sexually assaulted, choked, beaten, or threatened with a knife or gun (Matthyssen, 2011; Statistics

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Canada, 2013b). The undermining of Indigenous women’s roles and responsibilities and the tremendous respect accorded to them before colonization was heavily based in efforts to dehumanize them through stereotypes that portrayed Indigenous women as immoral, hypersexual, dirty, and uncivilized (Anderson, 2004; Native Women’s Association of Canada, 2007). These stereotypes have also been employed to minimize and justify violence against Indigenous women; this is most evident in the appalling numbers of missing and murdered mothers, aunties, grandmothers, sisters, nieces, daughters, and granddaughters, compounded for decades by the structural violence of the federal government’s failure to meaningfully respond, despite pleas from international bodies such as ­Amnesty International (2004, 2009), Human Rights Watch (Rhoad, 2013), and the United ­Nations Convention on the Elimination of All Forms of Discrimination against Women (­CEDAW, 2015). Indigenous families, communities, leaders, and political and service organizations spent ­decades organizing for safety, searching for loved ones, creating networks of support, and repeatedly calling for an inquiry into missing and murdered Indigenous women and girls – a call echoed in the 2015 Truth and Reconciliation Commission of Canada Calls to Action (Truth and Reconciliation Commission of Canada, 2015b). Finally, in December 2015, the Trudeau federal government announced the launch of the National Inquiry into Missing and Murdered Indigenous Women and Girls, which recently released its final report and Calls for Justice. One of the central findings and contributions of the Inquiry is the recognition of the multiple forms of violence levelled at Indigenous women, girls, and 2SLGBTQQIA peoples as acts of genocide (National Inquiry into Missing and Murdered Indigenous Women and Girls, 2019). While movement by the federal government to address the Calls for Justice has been slow, Indigenous women- and youthled networks like Families of Sisters in Spirit, No More Silence, the Native Youth Sexual Health Network, and It Starts With Us continue to support families and communities in honouring the lives of missing and murdered Indigenous women, girls, and Two-Spirit peoples through community organizing and the development and sharing of resources for violence prevention and healing. HIV/AIDS represents another serious threat to the health and well-being of Indigenous peoples broadly and Indigenous women specifically. Indigenous women account for approximately half of all new diagnoses within the Indigenous population, as well as nearly half of all new ­diagnoses among women in Canada (Archibald & Halverson, 2013; Public Health Agency of Canada, 2010a); they are also more likely to be diagnosed at a younger age than non-Indigenous women. Indigenous women and Indigenous peoples in general face significant barriers to health care on numerous fronts, including geographic isolation (for those living in rural or remote communities) and racism; these barriers are significantly compounded by the societal stigmatization associated with HIV and AIDS (Public Health Agency of Canada, 2010b), which likely contributes to more Indigenous women being diagnosed with later-stage HIV and AIDS (Canadian Aboriginal AIDS Network, 2011). However, to speak only of the risk or impact of HIV/AIDS on I­ ndigenous women can inadvertently contribute to what Tuck (2009) referred to as a “damage-centred” knowledge work that obscures the wisdom, joy, beauty, and leadership of HIV-positive Indigenous women in gathering and sharing knowledge, advocating for change, creating relational networks of support, and visioning for and embodying well-being. The Visioning Health and Visioning Health II projects are two powerful illustrations of this leadership (Canadian Aboriginal AIDS Network & University of Ottawa, 2014; Peltier, 2016).

Indigenous Women’s Health in Canada

The marginalization and structural violence of colonialism have created alarming inequities not only in the social determinants of health and health status of Indigenous women but also in access to health care as alluded to above. Health care access for Indigenous women varies not only by geographic location but also by state-imposed constructions of Indigenous identity that have created and sustained uneven access to Indigenous-specific health entitlements and services for Métis and non-status First Nations (Bourassa & Peach, 2009). For example, only status First ­Nations and Inuit peoples registered with a recognized Inuit Land claim organization are eligible for n ­ on-insured health benefits (NIHB), a federal program that supports access to medical goods and services, i­ncluding prescription medications, dental and vision care, short-term m ­ ental health and crisis ­intervention services, medical supplies, and transportation. However, simply ­being eligible for NIHB does not necessarily ensure adequate access to care and services for status First ­Nations and registered ­Inuit because of an ever changing roster of approved services and medications, ­on-reserve residency ­requirements for some services, prolonged timeframes for ­reimbursement, and significant challenges in the organization and distribution of medical transportation, particularly for those residing in far North and fly-in communities (Allan & Smylie, 2015; Haworth-Brockman et al., 2009). Past negative experiences with health care providers and the resultant anticipation of poor treatment are significant barriers to health care for Indigenous women, including fear of being ignored, discounted, or belittled because of racist assumptions that they narcotics-seeking, under the influence of alcohol, or otherwise undeserving of care (Allan, 2013; Browne et al., 2011; Goodman et al., 2017; Kurtz et al., 2008). Indigenous women who have children may also avoid seeking health care for fear of having their children apprehended as a result of health care providers operating within a racist stereotype that Indigenous mothers are “bad mothers”; a fear founded in the historic and ongoing invasive role of child welfare in the lives of Indigenous peoples (Allan, 2013; Denison et al., 2014; Kurtz et al., 2008; Leason, 2017). Efforts to transform the health status and health care access issues facing Indigenous women must fundamentally involve Indigenous women and be grounded in their voices, vision, knowledge, and experience (Allan, 2013; Dion Stout et al., 2001; Fiske & Browne, 2006; Kurtz et al., 2008).

REKINDLING THE FIRE: INDIGENOUS WOMEN’S APPROACHES TO HEALTH AND WELL-BEING The knowledge that will support [our] survival in the future will not be an artifact from the past. It will be a living fire, rekindled from surviving embers and fuelled with the materials of the twenty-first century. (Castellano, 2000, p. 34)

Despite the impacts of colonization and the persistent burden of health disparities, Indigenous women have continued to pick up, pass on, and revitalize their roles as leaders in ensuring and protecting the health and well-being of their families, communities, and nations. Whether we come from Inuit communities or Métis settlements, whether we grew up on reserves or among

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the concrete towers of an urban centre, we are central to transforming the impact of colonization on our communities and revitalizing the health and well-being of our families and communities. The following section illustrates the revitalization of Indigenous women’s health leadership roles, focusing on the resurgence of Indigenous midwifery. The focus on midwifery here is not meant to infer in any way that women’s health is equated only or foremost with reproductive health. I­ nstead, we focus on the work of our phenomenal midwives because it represents one of our greatest points of resistance to colonial policies and practices and demonstrates the exemplary leadership and transformative capacity of Indigenous women and communities. Further, it acknowledges the key role our midwives play in restoring Indigenous health not only in the provision of care from the conception of life to first breath but as Knowledge Keepers of health and well-being teachings across the lifecycle.

INDIGENOUS MIDWIVES AS HEALTH LEADERS Before colonization, midwives held sacred roles in Indigenous communities, not only in ushering in new life to our communities, but as bearers of health knowledge across the lifecycle. The medicalization of birth displaced the role of midwives and the practice of birthing at home in favour of physicians and hospitals, which were seen as better equipped to manage the “risks” and complications of birth (Smylie, 2001). For Indigenous women in northern and remote communities, the effects of this shift were compounded by the implementation of a medical evacuation policy that institutionalized the routine evacuation of pregnant women at 36 weeks’ gestation to medical centres, typically in southern urban centres and far from their families, homes, and communities (Lawford & Giles, 2012; Lawford et al., 2018; Van Wagner et al., 2007). For these women, medical evacuation means weeks and sometimes months away from their support systems, with significant implications for their health and well-being and that of their families (e.g., older children, partners). Until recently, Indigenous women faced tremendous financial barriers to being accompanied by a partner or family member as the NIHB program would cover the transportation cost of a support person only if a pregnant woman was under the age of 18 or if there were medical complications (O’Driscoll et al., 2011). In fall 2017, then federal health minister Dr. Jane Philpott announced that NIHB policy would be amended to allow funding for a travel companion for pregnant Indigenous women facing medical evaluation to birth their babies. Research examining Indigenous women’s experiences of medical evacuation has identified emotional impacts, including feelings of fear, anger, frustration, sadness, boredom, and loneliness, as well as physical impacts, including high blood pressure, loss of appetite. and subsequent weight loss (Phillips-Beck, 2010; O’Driscoll et al., 2011). Moreover, women have reported experiencing significant amounts of worry about their families at home, especially older children left behind, as well as financial worry (e.g., long distance telephone costs, cost of childcare for older children left behind, or funds for transportation to have a partner or family member attend the birth) and worry about reintegration into their families and communities after a prolonged absence (Kornelsen et al., 2010; Lalonde et al., 2009; O’Driscoll et al., 2011). The removal of birth from communities also impedes the intergenerational transmission of birthing knowledge, affecting the cultural integrity

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of communities (Lalonde et al., 2009), and ignores the importance of the relationship between Indigenous peoples and their land base.

Bringing Birth back to Communities: Key Examples of Indigenous Midwifery Leadership Indigenous midwives have been leading efforts to return birth to our communities and to restore traditional midwifery and birthing practices; we highlight some key examples of the health leadership of Indigenous midwives in the following section. Housed within the Inuulitsivik Health Centre in Puvirnituq, Nunavik, Quebec, the Inuulitsivik midwifery service and education program was developed in 1986 out of frustration with federal medical evacuation policies that had for decades required all Inuit women to leave their communities at 36 weeks of pregnancy and travel to southern hospitals (i.e., Montreal or Moose Factory) for childbirth. The development of the maternity service (birth centre) and midwifery education program culminated from the leadership efforts of Inuit women and community activism towards cultural revitalization, self-government, and healing from the ongoing effects of colonization; this fundamentally included reclaiming and returning birth to Inuit communities (Houd et al., 2004; Epoo & Van Wagner, 2005; Van Wagner et al., 2007). The Inuulitsivik program has long been internationally recognized as a benchmark example of community-controlled, midwife-led maternity care in remote communities (Epoo et al., 2012; Smylie, 2001); following the success in Inuulitsivik, two additional birth centres were opened in community health centres in Nunavik, Inukjuak, in 1998 and Salluit in 2004. Collectively these programs have yielded transformative results, including a significant decrease in the number of women evacuated to southern medical facilities to approximately 8 per cent of births (Centre de Santé Inuulitsivik, n.d.). The midwifery education integrates Inuit and non-Inuit knowledge and practices, creating academic and clinical curricula tailored to the needs and context of the North and grounded in Inuit pedagogy (Van Wagner et al., 2007). As of 2012, the program had graduated 13 midwives with another 10 students undergoing the process (Epoo et al., 2012). The Tsi Non:we Ionnakeratstha Ona:grahsta’ Maternal Child Health Centre opened on Six Nations of the Grand River Territory in 1996; it was the first birth centre to open in Ontario12 and the only on-reserve birth centre in the province. Tsi Non:we Ionnakeratstha Ona:grahsta’ not only facilitates the restoration of birthing to the territories of the Six Nations of the Grand River, it also contributes to the revitalization of traditional midwifery through its Aboriginal ­Midwifery ­Training Program. The centre provides not only midwifery care for expectant women and their families but also free programming that supports health and wellness for and is open to the whole community; this includes prenatal classes, a Moms and Tots group, Woman in All Her Seasons (addressing and providing teachings in women’s health across the life cycle – e.g., rites of passage, childbearing, menopause, and grandmothers), male self-care workshops, traditional parenting workshops, sessions on traditional foods and medicines, a gardening program, and a family/­ maternal resource library (Six Nations Council, 2008). The midwives who graduate from this program practise under a legislative exemption within the Midwifery Act (1991) of Ontario that acknowledges Aboriginal midwives and allows them to legally

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practise under the title of “Aboriginal midwife” to provide care to Aboriginal persons or members of an Aboriginal community. This practice exemption acknowledges the right of ­Aboriginal midwives to learn and practise traditional midwifery as opposed to training within a mainstream university-based midwifery education program and registering with the College of Midwives of Ontario (CMO). However, midwives practising under the exemption have long faced significant barriers to returning birth to their respective communities as they have not been eligible for the standard billing and fees structure of the Ministry of Health and Long-Term Care used to fund midwifery care provided by midwives registered with the CMO. While funding remains a critical challenge for Aboriginal midwives and communities in Ontario seeking to set up Aboriginal ­midwifery practices and/or develop birthing centres on-reserve, the province has recently begun to offer a pocket of funding for the development of Indigenous midwifery programs as a result of advocacy work by Indigenous midwives and community members, the National ­Aboriginal Council of Midwives (NACM), and the Association of Ontario Midwives (Association of O ­ ntario ­Midwives, 2015, 2019). Aboriginal midwifery exemptions are available in Nunavut, ­British ­Columbia, and ­Q uebec, but on a much more restrictive basis. To be eligible for an exemption in British C ­ olumbia and Nunavut, Aboriginal midwives must demonstrate that they were already practising traditional midwifery before the legislated regulation of midwifery; Aboriginal midwives in Quebec may practise without registering if the Aboriginal community, group, or nation they seek to work with has entered an agreement with the Quebec government (Robinson, n.d.). The NACM has also offered important leadership in the work of returning birth to community and revitalizing Indigenous midwifery. NACM is part of the broader Canadian Association of ­Midwives (CAM) and includes Indigenous midwives, student midwives, and midwife Elders striving towards a vision of having Indigenous midwives working in every Indigenous community (NACM, 2012). In addition to supporting the professional development of Indigenous midwives, NACM is also an ­important advocate in advancing Indigenous midwifery education, access to midwifery care, and choice of birthplace for Indigenous women, their families, and communities (NACM, 2012). The organization has developed a toolkit providing information about Indigenous midwifery and maternal, newborn, and infant health, and setting out a framework and activities for communities seeking to reclaim and return birth to their communities. The toolkit includes information about how to assess maternal health needs, birth rates, and the history of birth in the community, and it provides a guide for hosting a community asset mapping workshop to assess existing strengths, capacities, and gaps in services. For communities seeking to develop their own midwifery practice, the toolkit provides important information and resources in planning for and navigating issues of governance, the development of a business plan, and the evaluation of services, as well as the various provincial and territorial legislations addressing midwifery and, where applicable, the specific regulations regarding Indigenous midwifery. The vision and work of reclaiming birth and Indigenous midwifery is not restricted to r­ural, remote, or on-reserve communities but also lies in our urban centres as more than half of Indigenous women in Canada reside in urban centres (Urquijo & Milan, 2011). The Seventh G ­ eneration ­Midwives of Toronto (SGMT) is an urban Indigenous midwifery practice that serves and aims to improve the health and well-being of women and families from diverse cultures in ­Toronto through the provision of holistic care that accounts for the emotional, mental, physical, and spiritual ­experiences of a woman during the childbearing years (SGMT, 2014). The practice especially works

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to improve access to maternity care for Indigenous women and to support Indigenous women in reclaiming control of birth, which includes the choice to integrate traditional teachings and ceremonies (SGMT, 2014). In 2014, SGMT also led the development of the Toronto Birth Centre (TBC), one of the first birth centres to open in Ontario. While the TBC is open to all pregnant people in Toronto who are in the care of a midwife registered with the TBC, the space reflects an Indigenous aesthetic in its design, meant to create a welcoming space for all and especially for Indigenous families who face significant barriers to accessing maternity care. Most notably, the TBC functions under an Indigenous model of governance representing a significant innovation in governance practices of a mainstream health centre. For example, this model includes an Indigenous majority in representation and leadership across multiple governing bodies (i.e., the board of directors, community council), a centring of awareness of the histories of Indigenous peoples in Canada (including intergenerational effects of colonization), a commitment to supporting I­ ndigenous peoples’ reclamation of identity and culture, and efforts to resist colonization by attending to positionality, power, and privilege (TBC, n.d.). While the language used to describe the revitalization of Indigenous midwifery largely centres women given the stated focus of this chapter, it is important to note that the resurgence work of Two-Spirit peoples and the revitalization of Indigenous gender knowledges are reflected in the daily work of practices like SGMT and organizations like the TBC that operate within expansive understandings of what it means to be a lifegiver and recognition that pregnancy, birthing, and the need for midwifery care are not restricted to those who self-identify as women. “Each time a child is born it represents not only the birth of an individual but an opportunity to rebirth our families, communities and nations.” Grandmother Jan Kahehti:io Longboat

These examples of Indigenous midwifery leadership are all grounded in the inherent agency of Indigenous women, families, and communities and reflect our efforts to strive towards ­self-determination in birthing and in sexual and reproductive health more broadly. The resurgence of Indigenous midwifery recognizes that birth is not separate from the work of cultural revitalization or from our relationships to the land, waters, ancestors and future generations. Reclaiming birth is an act of collective and cultural healing; restoring birth and midwifery practices in our communities allows for intergenerational witnessing of and sharing knowing in relation to pregnancy, birthing, aftercare, and the roles and practices of midwifery. It allows for families and communities to revive and maintain traditional knowledge and practices through learning by seeing – by bearing witness to uninterrupted pregnancy, birthing, and childrearing – and through learning by doing – by practising what they know and what they have shared and witnessed. It seeks to transform the damage caused by centuries of policies and practices that have systematically separated Indigenous peoples from their knowledge, customs, traditions, languages, and lands; separated Indigenous children from their families and communities; and attempted to separate Indigenous lifegivers and their families from the ceremony of birth. The resurgence of Indigenous midwifery and the work of returning birth to communities and returning sexual and reproductive health knowledge to Indigenous lifegivers and their families are foundational to restoring and promoting Indigenous health and well-being for this generation and generations to come.

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CONCLUSION: LOOKING AND MOVING FORWARD IN RELATION For Aboriginal people the challenge is to translate the well-honed critique of colonial institutions into initiatives that go beyond deconstruction of oppressive ideologies and practices to give expression to Aboriginal philosophies, world views, and social relations. For non-Aboriginal people the challenge is to open up space for Aboriginal initiatives in schools and colleges, work sites, and organizations so that Indigenous ways of knowing can flourish and intercultural sharing can be practised in a spirit of coexistence and mutual respect. (Castellano, 2000, p. 23)

This chapter is part of our efforts to contribute to the vision and direction of Grandmother Marlene Brant Castellano to step beyond the work of deconstructing and critiquing oppressive and imposed constructions of Indigenous peoples, our lifeways, health, and well-being, and to direct our attention to articulating our own understandings and ways of knowing and doing related to supporting and revitalizing our health and well-being. We recognize the limitations and imposition of assumptions embedded in the use of zhaagaanaashmowin (English) in trying to describe ­Indigenous worldviews and in naming or addressing gender and gendered experiences and have tried our best to honour our relations, responsibilities, and teachings in spite of these challenges. We acknowledge the need for further examination of both the damage to Indigenous gender identities and knowledge through the imposition of colonial languages, Western gender binaries, and epistemic racism and the resurgence of Indigenous gender knowledges articulated through Indigenous languages, and, more specifically, how this knowledge can be further integrated into the training and practice of health researchers, practitioners, and policymakers (see, for example, Hunt, 2016). The knowledge shared here is meant to encourage both us and readers to carefully hold the realities of the historic and ongoing colonialism experienced by Indigenous peoples evident in the gross disparities in health outcomes and health care access, with the realities of our tremendous strength, wisdom, beauty, creativity, adaptability, and resilience, and in particular, the resurgence of Indigenous women’s health knowledge and leadership. Holding these realities together allows us to see ourselves in relation to our individual and collective past, the contested grounds on which Canada has been built, to the profound challenges to Indigenous health that require transformative thinking and doing, and to our collective future, which we are all actively creating in our day-to-day choices, actions, and interactions. Even though it cannot possibly reflect all Indigenous peoples, employing a relationality lens as a means to understand and discuss Indigenous women’s health and health leadership is meant to honour Indigenous ways of knowing, being, and doing and to alleviate the burden of having to first locate and know ourselves through imposed Western epistemologies and theoretical frameworks. It compels a recognition of our selves as more than the subject of colonial violence, as more than the racist stereotypical images of despair, dependence, and dysfunction ever present in Canadian society. It allows us, as we have been directed by G ­ randmother Jan Kahehti:io Longboat, to tell our own stories, to tell full stories, not only of the original harms of colonization and the persisting inequities that ensued, but of our strength, insistence, resilience, and capability to re-create and sustain our health and well-being.

Indigenous Women’s Health in Canada

Relationality invites non-Indigenous peoples to see themselves and their lives in relation to I­ndigenous peoples and to a deeper story of our existence, histories, and ways of knowing, being, and doing. Here, in this deeper understanding, in this place where our voices and visions are witnessed and acknowledged, where our Indigenous knowledge systems are not only recognized as valid but no longer inferior to Western ways of knowing, here lie the seeds of truth and reconciliation. We offer our gratitude to all the Indigenous midwives who are carefully tending these seeds by working to ensure Indigenous lifegivers and their families can have care that honours their voices, choices, and ways of knowing, being, and doing in the context of their unique histories and contemporary realities. We also offer gratitude for their collective efforts to return birth to our communities so that we can restore our peoples’ health from the first breath of life. ACKNOWLEDGMENTS We humbly acknowledge our colleagues in Inuit Nunangat and Prince Edward Island, Dr. Gwen Healey Akearok and Dr. Julie Bull, for their review and feedback on this chapter and for their generosity of spirit in sharing their knowledge and insights to enrich and enhance the content shared here.

DISCUSSION QUESTIONS 1 How would you describe some of the contributions of Indigenous women to advancing health knowledge and practice in the lands presently known as Canada? 2 How might an Indigenous relational theoretical lens apply in your own area of study or practice? 3 What stories have you been told about Indigenous women and Indigenous health through your education and mainstream media and in your own family and c­ ommunity? How do these stories shape your understanding of the knowledge shared in this chapter? 4 Are there tensions between the content or framing of the stories you had heard ­before reading this chapter and what you learned in the chapter? What stories will you tell as a result of your learning? 5 How does the information shared in this chapter contribute to your understanding of the unique needs, concerns, and realities of Indigenous women in navigating public health crises such as the COVID-19 pandemic?

NOTES 1 The World Health Organization (2006) defines health as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity” (n.p.), a definition it has used since 1948. 2 For a brief overview and explanation of terms used to describe Indigenous peoples in the lands currently known as Canada, please refer to Textbox A in Allan and Smylie (2015).

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Billie Allan and Janet Smylie 3 Any Indigenous population estimates developed by Statistics Canada should be understood as an undercount given the non-participation by multiple on-reserve First Nations communities and the temporary loss of the mandatory long-form census, which have significant implications for the quality of data available for non-Status Indians, Status Indians living off-reserve, Métis and Inuit peoples (Smylie, as cited in Crowder, 2014). 4 The last federally run residential school (Gordon Indian Residential School) closed in 1996 on George Gordon First Nation in Saskatchewan; the school was in operation for 107 years (Legacy of Hope Foundation, n.d.). 5 The Cedar Project included Indigenous youth ages 14–30 who self-reported having smoked or injected an illicit drug within the past month. 6 Williamson (2006) highlighted variations in gendered roles and responsibilities in Inuit families and communities, offering examples of the ways in these more complex understandings of gender intersected with sexuality, childrearing, and spiritual beliefs and practices. 7 Initially known as the Royal Northwest Mounted Police. 8 Summer tents were sewn from hides and also used to line igloos. 9 A small stone stove used for light, heat, and cooking. 10 The protective health benefits of country foods (e.g., seal, whale, caribou) have been demonstrated through research in Inuit communities, echoing what was already known by Inuit peoples. Country foods are increasingly suggested as an important determinant of Inuit health and one important means of addressing food insecurity. See, for example, Owen et al. (2012). 11 While denied by the RCMP and federal government, the government of Quebec has officially acknowledged and offered compensation for its role in the slaughter of qimmit. 12 The Toronto Birth Centre and Ottawa Birth and Wellness Centre opened in 2014. REFERENCES Adelson, N. (2005). The embodiment of inequity: Health disparities in Aboriginal Canada. Canadian Journal of Public Health, 96(2), S45–S61. https://doi.org/10.1007/BF03403702 Ahenakew, C. (2011). Birth of the “Windigo”: The construction of Aboriginal health in biomedical and traditional Indigenous models of medicine. Critical Literacy: Theories and Practices, 5(1), 14–26. http:// criticalliteracy.freehostia.com/index.php?journal=criticalliteracy&page=article&op=download&path %5B%5D=78&path%5B%5D=56 Allan, B. (2013). Rupture, defragmentation and reconciliation: Re-visioning urban Indigenous women’s health in Toronto [Doctoral dissertation, University of Toronto]. TSpace Repository. https://hdl.handle.net/1807 /68986 Allan, B., & Smylie, J. (2015). First Peoples, second class treatment: The role of racism in the health and well-being of Indigenous peoples in Canada. The Wellesley Institute. Amnesty International. (2004). Stolen sisters: A human rights response to discrimination and violence against Indigenous women in Canada. https://www.amnesty.ca/sites/amnesty/files/amr200032004enstolensisters.pdf Amnesty International. (2009). No more stolen sisters: The need for a comprehensive response to discrimination and violence against Indigenous women in Canada. https://Amnesty.ca/sites/default/files/amr200122009en.pdf Anderson, K. (2004). A recognition of being: Reconstructing native womanhood. Canadian Scholars’ Press. Anderson, K. (2008). Notokwe Opikiheet – “Old lady raised”: Aboriginal women’s reflections on ethics and methodologies in health. Canadian Woman Studies, 26(3). https://cws.journals.yorku.ca/index.php/cws /article/view/22106 Archibald, C., & Halverson, J. (2013). The current state of women and HIV in Canada: An overview of HIV/AIDS epidemiology in Canada. In J. Gahagan (Ed.), Women and HIV prevention in Canada: Implications for research, policy, and practice (pp. 5–14). Women’s Press. Armstrong, J. (1996). Invocation: The real power of Aboriginal women. In C. Miller & P. Chuchryk (Eds.), Women of First Nations: Power, wisdom, and strength (pp. ix–3). University of Manitoba Press.

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Indigenous Women’s Health in Canada Reading, C. (2013). Social determinants of health: Understanding racism. National Collaborating Centre for Aboriginal Health. https://www.nccih.ca/docs/determinants/FS-Racism1-Understanding-Racism -EN.pdf Reading, C. L., & Wien, F. (2009). Health inequalities and the social determinants of Aboriginal peoples’ health (pp. 1–47). National Collaborating Centre for Aboriginal Health. Robinson, K. (n.d.). The professional framework for midwifery practice in Canada. In E. K. Hutton, B. Murray-Davis, K., Kaufman, E. Carty, & M. Butler. (Eds.), Comprehensive midwifery: The role of the midwife in health care practice, education, and research date of publication. Open Library/PRESSBOOKS. https://ecampusontario.pressbooks.pub/cmroleofmidwifery/chapter/the-professional-framework-for -midwifery-practice-in-canada/ Royal Commission on Aboriginal Peoples. (1996). Volume 1: Looking forward, looking back. Report of the Commission on Aboriginal Peoples. Canada Communication Group. http://data2.archives.ca/e/e448 /e011188230-01.pdf Royer-Burkett, K. (2019, December 5). Erased no more: This project is documenting Canada’s Black Indigenous history. https://byblacks.com/ news/2440-erased-no-more-this-project-is-documenting-canada-s-black-indigenous-history Saewyc, E., Smith, A., Dixon-Bingham, B., Brunanski, D., Hunt, S., Simon, S., Northcott, M., & Matheson, M. (2008). Moving upstream: Aboriginal marginalized and street-involved youth in BC. McCreary Centre Society. http://epub.sub.uni-hamburg.de/epub/volltexte/2011/8979/pdf/moving_upstream _aboriginal_marginalized_streetinvolved_youth_in_bc.pdf Seventh Generation Midwives Toronto. (2014). About us. http://www.sgmt.ca/about/ Sinclair, R. (2004). Aboriginal social work education in Canada: Decolonizing pedagogy for the seventh generation. First Peoples Child & Family Review, 1(1), 49–61. https://doi.org/10.7202/1069584ar Sinclair, R. (2007). Identity lost and found: Lessons from the sixties scoop. First Peoples Child and Family Review, 3(1), 65–82. https://doi.org/10.7202/1069527ar Sinclair, R. (2017). The Indigenous child removal system in Canada: An examination of legal decisionmaking and racial bias. First Peoples Child & Family Review, 11(2), 8–18. http://journals.sfu.ca/fpcfr /index.php/FPCFR/article/view/310 Six Nations Council. (2008). Birthing centre. http://www.snhs.ca/bcPrograms.htm Smylie, J. (2001). SOGC Policy statement: A guide for health professionals working with Aboriginal peoples: Cross cultural understanding. Journal of the Society of Obstetricians and Gynaecologists of Canada, 100, 157–200. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3653841/ Smylie, J. (2009). The health of Aboriginal peoples. In D. Raphael (Ed.), Social determinants of health: Canadian perspectives (2nd ed., pp. 280–304). Canadian Scholars’ Press. Smylie, J., Fell, D., & Ohlsson, A. (2010). The Joint Working Group on First Nations, Indian, Inuit, and Métis Infant Mortality of the Canadian Perinatal Surveillance System. A review of Aboriginal infant mortality rates in Canada – Striking and persistent Aboriginal/non-Aboriginal Inequities. Canadian Journal of Public Health, 101(2), 143–148. https://doi.org/10.1007/BF03404361 Smylie, J., Kaplan-Myrth, N., & McShane, K. (2009). Indigenous knowledge translation: Baseline findings in a qualitative study of the pathways of health knowledge in three indigenous communities in Canada. Health Promotion Practice, 10(3), 436–446. https://doi.org/10.1177/1524839907307993 Smylie, J., Snyder, M., Allan, B., Booth, S., & Senese, L. (2013). Gathering and applying reproductive, maternity, and family health information to support Aboriginal maternity services in the GTA: Aboriginal health data collection [Aboriginal community engagement project summary report]. Well Living House. Smylie, J., Wolfe, S., & Senese, L. (2016). For seven generations: Visioning for a Toronto Aboriginal birth centre [Community meeting report]. Well Living House. http://www.welllivinghouse.com/wp-content/uploads /2018/09/Visioning-For-a-Toronto-Aboriginal-Birth-Centre-Report.pdf Smylie, J., Firestone, M., Spiller, M., & Tungasuvvingat Inuit. (2018). Our health counts: population-based measures of urban Inuit health determinants, health status, and health care access. Canadian Journal of Public Health, 109(5/6), 662–670. https://doi.org/10.17269/s41997-018-0111-0

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Billie Allan and Janet Smylie Sparrow, C. (2018). Reclaiming spaces between: Coast Salish Two Spirit identities and experiences [Master’s thesis, University of Victoria]. UVicSpace. https://dspace.library.uvic.ca//handle/1828/9993 Standing Committee on Indigenous and Northern Affairs. (2017, October 17). Minutes of proceedings. House of Commons. https://www.ourcommons.ca/DocumentViewer/en/42-1/INAN/meeting-75/evidence Statistics Canada. (2013a). Aboriginal peoples in Canada: First Nations people, Métis and Inuit. National Household Survey, 2011 (Catalogue No. 99-011-X2011001). Minister of Industry. http://www12.statcan .gc.ca/nhs-enm/2011/as-sa/99-011-x/99-011-x2011001-eng.cfm Statistics Canada. (2013b). Measuring violence against women. http://www.statcan.gc.ca/pub/85-002-x /2013001/article/11766-eng.pdf Statistics Canada. (2017). The Daily: Aboriginal peoples in Canada: Key results from the 2016 census. https:// www150.statcan.gc.ca/n1/daily-quotidien/171025/dq171025a-eng.htm Statistics Canada (2018). First Nations People, Métis and Inuit in Canada: Diverse and growing populations (Catalogue No. 89-659-X). https://www150.statcan.gc.ca/n1/pub/89-659-x/89-659-x2018001-eng.htm Statistics Canada. (2019a). Aboriginal peoples highlight tables, 2016 census. Aboriginal identity population by female, total – Age, 2016 counts, Canada, provinces and territories, 2016 Census – 25% Sample data. https:// www12.statcan.gc.ca/census-recensement/2016/dp-pd/hlt-fst/abo-aut/Table.cfm?Lang=Eng&S=99 &O=A&RPP=25 Statistics Canada. (2019b). Aboriginal peoples highlight tables, 2016 Census. Aboriginal identity population by female, age 15 to 24, 2016 counts, Canada, provinces and territories, 2016 Census – 25% Sample data. https:// www12.statcan.gc.ca/census-recensement/2016/dp-pd/hlt-fst/abo-aut/Table.cfm?Lang=Eng&S=99&O =A&RPP=25 Statistics Canada. (2019c). Aboriginal peoples highlight tables, 2016 Census. Aboriginal identity population by female, age 0 to 14, 2016 counts, Canada, provinces and territories, 2016 Census – 25% Sample data. https:// www12.statcan.gc.ca/census-recensement/2016/dp-pd/hlt-fst/abo-aut/Table.cfm?Lang=Eng&S=99&O =A&RPP=25 Steinmetz, K. (2020, February 20). She coined the term “Intersectionality” over 30 years ago. Here’s what it means to her today. Time magazine. https://time.com/5786710/kimberle-crenshaw-intersectionality/ Stevenson, W. (2011). Colonialism and First Nation women in Canada. In M. J. Cannon & L. Sunseri (Eds.), Racism, colonialism and indigeneity in Canada: A reader (pp. 44–52). Oxford University Press. Tagalik, S. (2009/2010). Inunnguiniq: Caring for children the Inuit way. National Collaborating Centre for Aboriginal Health. https://www.nccah-ccnsa.ca/docs/health/FS-InunnguiniqCaringInuitWay -Tagalik-EN.pdf Tait, C. L., Henry, R., & Loewen-Walker, R. (2013). Child welfare: A social determinant of health for Canadian First Nations and Metis children. Pimatisiwin, 11(1) 39–53. https://research-groups.usask.ca /taitresearchgroup/child-welfare-a-social-determinant-.pdf Toronto Birth Centre. (n.d.). Indigenous framework: Toronto Birth Centre. https://torontobirthcentre.ca/wp -content/uploads/2021/05/Indigenous-Framework-Pamphlet-Update-2018.pdf Trott, C. G. (2006). The gender of the bear. Étudies/Inuit/Studies, 30(1), 89–109. https://doi.org/10.7202 /016151ar Truth and Reconciliation Commission of Canada. (2015a). The Survivors speak: A report of the Truth and Reconciliation Commission of Canada. http://www.trc.ca/assets/pdf/Survivors_Speak_English_Web.pdf Truth and Reconciliation Commission of Canada. (2015b). Truth and Reconciliation Commission of Canada: Calls to Action. http://trc.ca/assets/pdf/Calls_to_Action_English2.pdf Tuck, E. (2009). Suspending damage: A letter to communities. Harvard Educational Review, 79(3), 409–427. https://doi.org/10.17763/haer.79.3.n0016675661t3n15 Tulloch, S., Kusugak, A., Uluqsi, G., Pilakapsi, Q., Chenier, C., Ziegler, A., & Crockatt, K. (2013). Stitching together literacy, culture and well-being: The potential of non-formal learning programs. Northern Public Affairs, 2(2), 28–32. http://www.northernpublicaffairs.ca/index/wp-content/uploads/2014/09/NUNAVUT -LITERACY-COUNCIL.pdf

Indigenous Women’s Health in Canada United Nations Convention on the Elimination of All Forms of Discrimination against Women. (2015). Report of the inquiry concerning Canada of the Committee on the Elimination of Discrimination against Women under article 8 of the Optional Protocol to the Convention on the Elimination of All Forms of Discrimination against Women. United Nations. tbinternet.ohchr.org/Treaties/CEDAW/Shared%20 Documents/CAN/CEDAW_C_OP-8_CAN_1_7643_E.pdf Urquijo, C. R., & Milan, A. (2011). Women in Canada: A gender-based statistical report (Statistics Canada Report No. 89-503-X). Minister of Industry. http://www.statcan.gc.ca/pub/89-503-x/2010001/article /11475-eng.pdf Van Wagner, V., Epoo, B., Nastapoka, J., & Harney, E. (2007). Reclaiming birth, health, and community: Midwifery in the Inuit villages of Nunavik, Canada. The Journal of Midwifery & Women’s Health, 52(4), 384–391. https://doi.org/10.1016/j.jmwh.2007.03.025 Walters, K. L., & Simoni, J. M. (2002). Reconceptualizing Native women’s health: An “indigenist” stresscoping model. American Journal of Public Health, 92(4), 520–524. https://doi.org/10.2105/AJPH.92.4.520 Walton, F., & O’Leary, D. (Eds.). (2015). Sivimut: Towards the future together. Inuit women educational leaders in Nunavut and Nunavik. Women’s Press. Wesley, M. (2012). Marginalized: The Aboriginal women’s experience in federal corrections. Public Safety Canada. Wesley-Esquimaux, C. (2009). Trauma to resilience: Notes on decolonization. In E. Guimond, G. Guthrie Valaskakis & M. Dion Stout (Eds.), Restoring the balance: First Nations women, community and culture (pp. 13–34). University of Manitoba Press. Williamson, L. (2006). Inuit gender parity and why it was not accepted in the Nunavut legislature. Études/ Inuit/Studies, 30(1), 51–68. https://doi.org/10.7202/016149ar Willows, N. D., Veugelers, P., Raine, K., & Kuhle, S. (2009). Prevalence and sociodemographic risk factors related to household food security in Aboriginal peoples in Canada. Public Health Nutrition, 12(8), 1150–1156. https://doi.org/10.1017/S1368980008004345 Wilson, A. (2013). How we find ourselves: Identity development and two-spirit people. In S. Ferguson (Ed.), Race, gender, sexuality and social class: Dimensions of inequality (pp. 198–206). Sage. Wilson, D., de la Ronde, S., Brascoupe, S., Apale, A. N., Barney, L, Guthrie, B., Horn, O., Johnson, R., Rattray, D., & Robinson, N. (2013). Health professionals working with First Nations, Inuit, and Métis sonsensus guideline. Journal of Obstetrics & Gynaecology Canada, 35(6, Suppl. 2), S1–S52. https://doi.org /10.1016/S1701-2163(15)30915-4 World Health Organization. (1986, November 21). Ottawa Charter for Health Promotion: First international conference on health promotion ottawa. https://www.who.int/healthpromotion/conferences/previous/ottawa/en/ World Health Organization. (2006). Constitution. https://www.who.int/about/who-we-are/constitution Yoshizawa, A. (Director). (2016). All our father’s relations [Film]. Right Relations Productions. Additional Recommended Readings Dion Stout, M., Kipling, G. D., & Stout, R. (2001). Aboriginal women’s health research synthesis project: Final report. Canadian Women’s Health Network. Healey, G., & Meadows, L. M. (2008). Tradition and Culture: An important determinant of Inuit women’s health. Journal of Aboriginal Health, 4(1), 25–33. https://doi.org/10.18357/ijih41200812312 Métis Centre of the National Aboriginal Health Organization. (2011). Métis women and disease: A preliminary examination. National Collaborating Centre for Aboriginal Health. Smylie, J. (2001). SOGC policy statement: A guide for health professionals working with Aboriginal peoples: Cross cultural understanding. Journal of the Society of Obstetricians and Gynaecologists of Canada, 100, 157–200. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3653841/Wilson, D., de la Ronde, S., Brascoupe, S., Apale, A. N., Barney, L, Guthrie, B., Horn, O., Johnson, R., Rattray, D., & Robinson, N. (2013). Health professionals working with First Nations, Inuit, and Métis consensus guideline. Journal of Obstetrics & Gynaecology Canada, 35(6), P550–P553. https://doi.org/10.1016/S1701-2163(15)30915-4

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Reproductive Politics: Reproductive Choice to Reproductive Justice Holly A. McKenzie

INTRODUCTION Reproductive-rights organizing in the United States and Canada has long focused on securing women and girls’ rights and access to abortion and contraceptives, or reproductive choice. However, reproductive justice activists and theorists are disrupting and complexifying reproductive politics (Shaw, 2013; Silliman et al., 2004; Solinger, 2013). For over 20 years, Indigenous women and women of colour have been articulating and activating reproductive justice, a framework grounded in intersectionality that considers a diversity of interconnected rights to determine (a) whether or not to have children, including whether to prevent, terminate, or continue a pregnancy; (b) birthing conditions, including whether to have a physician- or midwife-attended birth; and (c) how to raise children in safe and healthy ways, free from institutional and interpersonal violence (Ross & ­Solinger, 2017). This chapter begins with a brief history of the movement to secure legal and ­accessible contraceptives and abortion services in Canada and discusses this movement’s shift from one that diverse radical, materialist, and liberal feminists worked on together to one that is dominated by the liberal feminist “pro-choice” position, which offers a limited/limiting framework for analysis. I argue that when we centre choice, issues and concerns crucial to many people’s reproductive freedoms and dignity are marginalized. The continuing interrelated violations of the reproductive freedoms of women and Two-Spirit and trans people make a shift in organizing, thinking, and action critical. Reproductive justice as a framework fosters complex, robust analyses, with a strong reciprocal relationship between theory and action. I engage a reproductive justice framework, informed by Indigenous feminist theories, to briefly explore the over-involvement of the Canadian child welfare system in Indigenous children’s lives. This analysis, as brief as it is, highlights the potential of reproductive justice as an analytical and activist framework. I further explore reproductive justice work and analysis, relating the guiding principles of reproductive justice work that Ross (2017) recently offered, and exploring the relationship between reproductive rights, reproductive health, and reproductive justice. I argue

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that if people working in health services and law employ reproductive justice principles and analyses in their work, they will further foster reproductive freedom and dignity for all. Last, I discuss how the reciprocal relationship within reproductive justice between activism and theorizing, and reproductive justice organizers’ and theorists’ leadership in anti-appropriation can inform intersectionality research, activism, and theorizing.

REPRODUCTIVE “CHOICE” A Brief History Reproductive rights organizing emerged in response to the criminalization of abortion and contraceptives in North America and gained considerable momentum during the second wave of the feminist movement (Rebick, 2005; also see Morrow and Sethna, chapter 3, this volume). In the United States and Canada, the struggle for women’s rights to birth control and abortion services is viewed as the first issue that brought together members of the women’s movement organizing for radical, socialist, and liberal goals (Rebick, 2005; Solinger, 2013). However, at times feminists also aligned themselves with eugenicists and population control proponents or espoused these politics themselves (Dyck, 2013; Silliman et al., 2004; Solinger, 2013). For instance, Margaret Sanger, founder of the American Birth Control League, argued for the use of birth control to limit the children of “unfit” mothers (Davis, 2008). In Canada, abortion was criminalized in 1869 and ­liberalized in 1969, when section 251 of the Criminal Code allowed women abortions under certain conditions (Rebick, 2005). However, even then, abortion was not accessible for most women, nor was it their decision to make. From 1969 until 1988, women could legally obtain an abortion (a) if their general practitioner referred them for an abortion; (b) if they were able to access care at a hospital that had a Therapeutic Abortion Committee (TAC) (most hospitals did not set up TACs); and (c) if these committees, predominantly comprising male doctors, decided that continuing a pregnancy put their health in danger (Rebick, 2005; Sethna et al., 2013). In 1970, 17 Vancouver Women’s Caucus members formed the abortion caravan and travelled to Ottawa (where they were joined by many other women and men) to protest the restrictions under this 1969 law (Rebick, 2005), but the restrictions were not lifted. In the United States, the 1973 Supreme Court Decision Roe v Wade legalized abortion, determining that women’s right to terminate a pregnancy is protected under the constitutional principle of privacy (Solinger, 2013). Many Canadian women who were unable to access a termination in Canada travelled to the United States for abortion services after the Roe v. Wade decision (Sethna et al., 2013). The feminist struggle to attain (and maintain) legal and accessible abortion continued through the mid- to late 20th century. During the 1970s and 1980s in Canada, the project of decriminalizing abortion largely played out through the Henry Morgentaler clinics, first in Quebec and then later in Toronto and Winnipeg. In 1967, Morgentaler, a Holocaust survivor who immigrated to Canada in 1950 and became a physician, publicly stated that he supported women’s right to legal abortions. Following this statement, he was contacted by numerous women seeking pregnancy terminations (Sethna et al., 2013). In the 1970s, Morgentaler began providing abortions in his Montreal clinic.

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He was arrested, charged, but later acquitted by Quebec juries three times. This, in effect, legalized abortion in Quebec in 1976 (Rebick, 2005; Sethna et al., 2013). On invitation from local women’s health workers, Morgentaler opened clinics in Toronto and Winnipeg during the 1980s, which were also raided. Again, Morgentaler was arrested and charged (along with other staff members and women who had just had abortions). In 1988, the Supreme Court reached a decision on R v Morgentaler (1988) 1 SCR 30 when five of the seven justices ruled that the abortion provision in the Criminal Code was unconstitutional. This ruling effectively decriminalized abortion federally, and Canada is one of the few countries that does not have a federal law regulating abortion (­Rebick, 2005; Halfman, 2011; also see Morrow and Sethna, chapter 3, this volume).

Pro-choice: Reified as a Liberal Feminist Position In the 30 years since R v Morgentaler, dominant reproductive-rights organizing has become synonymous with the pro-choice position and grounded in liberal feminism. This ideological shift, from an issue that diverse radical, materialist, and liberal feminists worked on together to a liberal feminist position, was signified (and further enabled) by the discursive reorientation from “abortion on demand” to the “right to choose” (Rebick, 2005; Solinger, 2013). As Ruhl (2002) explained: Part of the success of defenses of reproductive freedoms on the grounds of “choice” has been the thoroughgoing liberalness of such claims. Choice is a quintessentially liberal idea; it is inherent in liberal

philosophy where the individual human is a “free agent” who exercises her or his rational capacity in

making choices. It is also inherent in liberal views of rights: the individual right to autonomy is all too readily reduced to choice. (p. 37)

Ruhl (2002) went on to explain that because of how contemporary liberalism understands individuality and personhood, pregnant women are not conceptualized as legitimate subjects, either philosophically or practically (pp. 37–38). Liberalism holds that subjects have both rights and responsibilities. Liberal ideologies depend on binaries, such as social/natural and public/private, binaries that pregnancy transgresses. Within this framework pregnant women and fetuses ­exist simultaneously as “one liberal subject in two bodies” (Ruhl, 2002, p. 39). The naturalized relation between pregnant women and fetuses dictates that all of the rights belong to the fetus, while the pregnant woman fulfils all necessary obligations. In summary, the political efficacy of the ­pro-choice paradigm is undermined by (a) liberalism’s inability to view pregnant women as liberal subjects; (b)  pregnancy’s transgression of liberal binaries; and (c) the conceptualization of the pregnant woman as one subject with two bodies, within which women are expected to take on all of the subject’s obligations and to make decisions in the best interest of the fetus. While pro-choice activists dispute these traps of liberal thought, liberalism as a theoretical ground for analysing reproductive politics remains shaky. Next, I explore how a pro-choice framework, grounded in liberal thought, enables and limits certain modes of organizing and activism. As long as choice remains the central concept in reproductive rights, issues and concerns that are crucial to many people’s reproductive future remain marginalized. Analysis and activism that robustly address inaccessible abortion services, abusive abortion practices, and the over-involvement of Canada’s

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child welfare system in Indigenous children’s lives is necessary to foster reproductive freedom and dignity. These issues may all be recognized by reproductive choice organizers as important, but they do not all garner significant attention or resources. This is not to deny the significance of accessible abortion services and contraceptives to women living in situations of low income, women of colour, Indigenous women, and Two-Spirit and trans people. In 1992, an enquiry was ordered into Yellowknife Stanton Hospital’s procedures after Indigenous and non-­Indigenous women complained of being denied anaesthesia during abortions. Women were given only analgesics and muscle relaxants during the procedure. The doctor also made derogatory comments to women having the procedures (Cernetig, 1992; Walsh, 1992). This violence is particularly concerning for Indigenous women, as they constitute the majority of women in the Northwest Territories. At that time, the Stanton Hospital was also the only hospital in Arctic and sub-Arctic Canada where abortion procedures were carried out (Walsh, 1992). While diverse forces continue to broaden conversations about reproductive politics, legal and accessible abortion services are under threat from the anti-choice movement’s attempts to further regulate, limit, and criminalize abortions. For instance, in Canada, Stephen Woodworth introduced Private Member’s Bill Motion 312 in 2012 that would have struck a special committee to review Criminal Code subsection 223(1), which states that a child’s life begins at complete birth (­Woodworth, 2012). However, the House of Commons defeated the motion 203 to 91. The threats to legal and accessible abortion and contraceptives are felt more intensively in the United States, where, between 2011 and 2013, different states enacted 205 anti-abortion measures, more than in the previous 10 years (Boonstra & Nash, 2014). Similarly, in 2017, Congress passed legislation under which states can decide to “ban organizations that perform abortion services for reimbursement for providing services unrelated to abortion” (Goodwin, 2017, p. 1), in effect punishing organizations that provide abortion services. We require a broad reproductive politics that pays attention to threats to legal and accessible abortion services and contraception, and other forms of reproductive violence.

DEVELOPMENT OF THE REPRODUCTIVE JUSTICE MOVEMENT IN NORTH AMERICA Indigenous women and women of colour have a long history of determining their reproductive ­futures within constraining conditions and working to transform these conditions (Anderson, 2011; Lavell-Harvard & Lavall, 2006; Ross, 2017; Silliman et al., 2004; Suzack, 2010). While securing legal and accessible abortion and birth control is a part of this work, it is neither the sum total nor the central focus of it. Rather, this work also addresses other diverse reproductive violations, including, but not limited to, sterilization abuse; misuse of long-term contraceptives; inaccessible and unsafe reproductive health services; harms of environmental toxins on maternal and child health; lack of services for (and in some states criminalization of ) pregnant and parenting women dealing with problematic substance use; limited rights for queer parents; limited access to midwifery and doula care; unsafe housing; over-involvement of the child welfare system in ­Indigenous families in ­Canada; the relationship between violence on Indigenous lands and violence on Indigenous bodies; and police violence against Indigenous and Black people, as well as the over-incarceration of Indigenous peoples in Canada (Beaumonis & Bond-Theriault, 2017; Hoover et al., 2012; Hui et al, 2017; Indian Treaty

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Council Joint Statement, 2013; Native Youth Sexual Health Network & International Trust Black Women, 2018; Nelson, 2003; Ross, 2017; Silliman et al., 2004; Williams, 2014; Women’s Earth Alliance & Native Youth Sexual Health Network, 2016; Yee, 2011). As such, the community work and activism of women of colour and Indigenous women addresses interconnecting reproductive violations that are shaped by how settler-colonialism, classism, racism, and heteropatriarchy ­position certain bodies as ideal mothers/parents and deviant mothers/parents within the nation-state. The first robust articulation of a reproductive justice framework came in 1994, when a group of women of colour from the United States participated in the International Conference on ­Population and Development in Cairo, Egypt (Ross, 2006). At this conference, women from global South countries pushed governments to go beyond committing to human rights in the abstract to creating the conditions (through services, supports, policies, and laws) in which those rights can be exercised. Shortly afterwards women of colour in the United States theorized and defined ­reproductive justice grounded in their experiences of reproductive violence and in their vision of reproductive freedom and dignity (Ross, 2006). Grounded in human rights and intersectionality, reproductive justice focuses on three interconnected human rights (Ross, 2017): 1 The right to have a child under the condition of one’s choosing; 2 The right not to have a child using birth control, abortion, or abstinence; and 3 The right to parent children in safe and healthy environments free from violence by individuals or the state. (p. 290) As a framework, reproductive justice has shifted in response to emerging conditions and issues over the past 20 years and is now articulated and activated by different communities in various ways, which highlights its liberatory potential and power (Beaumonis & Bond-Theriault, 2017; Ross, 2017; Silliman et al., 2004; Yee, 2011). For instance, reproductive justice work within ­Indigenous organizations, such as the Native Youth Sexual Health Network, centres Indigenous self-­determination and decolonization. Colonial forces have used, and continue to use, reproductive and sexual violence to try to control Indigenous peoples (e.g., apprehension of Indigenous children and coercive sterilization of Indigenous women) (McKenzie, 2020; Million, 2013; Stote, 2017; ­Women’s Earth ­Alliance & Native Youth Sexual Health Network, 2016). Through decolonizing reproductive and sexual ­relations and practices, Indigenous women and Two-Spirit people are fostering their own, their families’, and other Indigenous peoples’ reproductive and sexual justice (McKenzie, 2020). Recent work by the Women’s Earth Alliance & Native Youth Sexual Health Network (2016) documented Indigenous women’s and young people’s experiences living within the context of resource extraction and environmental violence across North America, and illustrated the relationship between violence on Indigenous lands and violence on Indigenous bodies. This relationship between systematic and individual violence is visible in many women’s, Two-Spirit people’s, and trans people’s reproductive lives, and Indigenous women and women of colour have led the way in articulating this relationship, the material impacts of systematic oppressive forces, as well as visions of reproductive just futures (­Crenshaw, 1991; Maracle, 1990; Silliman et al., 2004; Women’s Earth Alliance & N ­ ative Sexual Health Network, 2016). See for instance, Jayda Delorme’s bodypainting dedicated to missing and murdered Indigenous women, girls, and Two-Spirit people (MMWG2S) in figure 6.1. In 2014 the

Figure 6.1.  Jayda Delorme’s bodypainting of Kayla Ward, dedicated to MMWG2S. Every element of this piece holds much symbolic meaning, which emphasizes the strength, power, and resilience of Indigenous women, girls, and Two-Spirit people, and love and honour for the families of MMWG2S. Photographer: Bill Stevenson. Model: Kayla Ward. Artist: Jayda Delorme. Artwork created and photographed on the homelands of the Métis Nation and Treaty Four Territory. Jayda Delorme is Nêhiyaw from Treaty Four Territory.

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National Aboriginal Council of Midwives and the National Youth Sexual Health N ­ etwork ­released an Aboriginal midwifery toolkit “­developed to provide concrete knowledge and tools for First ­Nations, Inuit and Métis communities looking to bring birth and ­midwifery care closer to home” (para 1). Indeed, bringing Indigenous births and midwifery closer to ­Indigenous communities is an act of resurgence and self-determination (Lavell-Harvard & Lavall, 2006; ­National ­Aboriginal Health Organization, 2008), as well as a form of reproductive justice.

EXPLORING THE OVER-INVOLVEMENT OF THE CANADIAN CHILD WELFARE SYSTEM IN INDIGENOUS CHILDREN’S LIVES THROUGH A REPRODUCTIVE JUSTICE FRAMEWORK In order to illustrate how engaging reproductive justice frameworks foster complex analyses, I will examine the over-involvement of the child welfare system in Indigenous children’s lives in Canada through a reproductive justice framework informed by Indigenous feminist theorizing (Green, 2007; Million, 2013; Native Youth Sexual Health Network & First Nations Child and Family ­Caring Society of Canada, 2012; Silliman et al., 2004; Suzack, 2010). Through this frame, the ongoing apprehension of Indigenous children from their families and communities is situated as a practice with a long history, first through the Indian Residential School System and more recently through the child welfare system during the Sixties Scoop and continuing today (Blackstock, 2007; Johnston, 1983; McKenzie & Hudson, 1985; McKenzie et al., 2016; Million, 2013; Sinclair, 2007). This practice has not only continued, it has grown. Blackstock et al., (2004) estimated that three times as many children were in the care of the state in 2004 than at the height of residential schools in Canada. Recent studies show that this trend continues, and as a result many Indigenous children continue to live away from their families (Sinha et al., 2011; Trocmé et al., 2010). This reproductive injustice cannot be flattened into any single cause or even combination of causes. Rather, each factor intersects with the others in complex ways to place Indigenous children at risk of apprehension within a punitive system grounded in white-settler ideals. These intersecting factors, which have been illuminated in many cases by the work of Indigenous activists, feminists, and scholars, include (a) chronic underfunding of First Nations child welfare agencies in relation to provincial child welfare agencies (with recent efforts to rectify this disparity) (Ballingall, 2018;Canadian Child Welfare Research Portal, n.d., First Nations Child and Family Caring Society of Canada, 2005a, 2005b); (b) Euro-Western notions of family and individuals that inform child welfare legislation (de Leeuw et al., 2010; Walkem, 2015); (c) forces that push Indigenous women and families into conditions of low income (Aboriginal Affairs and Northern Development Canada, 2013; G ­ overnment of Canada, 1996; Hughes, 2013); and (d) widespread stereotypes of Indigenous women and families (Browne & Fiske, 2001; Denison et al., 2014; Fiske & Browne, 2006; McKenzie, 2012; Tait, 2009). Reproductive justice also highlights the interconnections between over-involvement of child welfare in Indigenous families’ lives and other reproductive injustices to which Indigenous women have been, and continue to be, subjected, that is, coercive sterilization, coercive practices related to long-term contraceptives and abortion services, and underfunding of social services to First Nations (Blackstock, 2007; Boyer & Bartlett, 2017; McKenzie, 2020; Native Youth Sexual Health

Reproductive Politics

Network & Action Canada for Sexual Health & Rights, 2016; Stote, 2015, 2017), as well as the larger colonial project to assert Canadian sovereignty over Indigenous lands. As this is a complex issue bound by history, it does not come with one recommendation or solution. Indigenous activists and their allies advocate for a number of material changes to foster the care of Indigenous children in their families and communities, which include (a) respecting and supporting Indigenous communities rights to self-determination; (b) transforming child welfare legislation, standards of practice, assessment models, and funding models so they reflect Indigenous world views and community realities; (c) increasing the availability of culturally safe programming and services for families; and (d) increasing affordable and safe housing (Caring for First Nations Children Society & Nota Bene Consulting Group, 2009; First Nations Child and Family Caring Society of Canada, 2005a, 2005b; McKenzie et al., 2016; Native Youth Sexual Health Network & First Nations Child and Family Caring Society of Canada, 2012). ­Different organizations and bodies are pressuring Canada to address the over-involvement of child w ­ elfare in the lives of Indigenous children with some response from the Canadian government. For ­instance, in the 2016 First Nations Child and Family Caring Society of Canada et al. v. Attorney General of Canada (for the Minister of Indian and Northern Affairs Canada) case, the Canadian ­Human Rights Tribunal found that Canada was racially discriminating against First Nations children through underfunding First Nations child and family services, and ordered Aboriginal Affairs and Northern Development Canada, now Department of Indigenous Services Canada to cease this discriminatory practice. In 2019, the Canadian government passed Bill C-92: An Act respecting First Nations, Inuit and Métis children, youth and families (2019), which facilitates First Nation, Métis, and Inuit communities’ development and implementation of child welfare policies. In 2021, Cowessess First Nation became the first Indigenous government to sign a coordination agreement with the Canadian and Saskatchewan governments under Bill C-92. This agreement recognizes and materially supports Cowessess First Nation’s inherent rights to s­ elf-determination over their children and youth (Djuric, 2021). While this recent development is promising, ­Indigenous peoples and allies must continue to press the government to transform services and programming, and Indigenous–settler relations. The time to foster the care of Indigenous children in their families and communities is now.

CURRENT CONVERSATIONS ABOUT THE NATURE OF REPRODUCTIVE JUSTICE WORK My brief analysis above exemplifies the complexity that engaging reproductive justice offers. ­Indeed, reproductive justice work and the use of its framework have grown in the United States and, to a lesser degree, in Canada (Native Youth Sexual Health Network & Action Canada for Sexual Health & Rights, 2016; Ross, 2017; Shaw, 2013). Although most of the diverse work ­engaged under the umbrella of reproductive justice is evidence of the flexibility and complexity of the framework, some activists and organizations are misusing the term, resignifying reproductive choice work as reproductive justice, without doing the deep, reflexive work necessary to transform their approach. Shaw (2013) wrote that activists working under the label of reproductive justice in

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Canada are focused on the ongoing struggle for women’s right to, and access to, abortion services. This trend continues. There are very real concerns that activists and organizations using the term in this way will effectively resignify the framework as well (Luna, 2011). To prevent the flattening of reproductive justice into reproductive choice, activists and theorists have highlighted guiding principles of reproductive justice work. As Ross (2017) articulated: • Intersctionality-issues must be inter-connected • Connects the local to the global

• Based on the human rights framework

• Makes the link between the individual and community • Addresses government and corporate responsibility • Fights all forms of population control (eugenics)

• Commits to individual/community leadership development that results in power shifts

• Puts marginalized communities at the center of the analysis

• Understands that political power, participation of those impacted, and policies changes are ­necessary to achieve reproductive justice

• Has its own intersectionality of involving theory, strategy and practice, and • Applies to everyone. (p. 301)

With these guidelines in mind, I examine the relationship between reproductive rights, reproductive health, and reproductive justice. Luna (2011) and Ross (2017) articulated reproductive rights (as a legal framework) and reproductive health (the provision of health services) as necessary and distinct from reproductive justice organizing and advocacy. I argue that these distinctions may be more limiting than useful, as reproductive rights and reproductive health services can and should be informed by principles and analyses of reproductive justice. For instance, reproductive health practitioners can (and do) develop relationships with organizations that provide services for queer parents, parents who problematically use substances, and young parents. They can also connect women, girls, and TwoSpirit and trans people who become pregnant to relevant services. Further, organizations can do the deep, reflexive work necessary to make sure their organizations’ mission, goals, and values align with and support reproductive justice and engage intersectional analyses. Similarly, those working within the legal framework can use reproductive justice analyses to highlight interconnecting reproductive violations and ensure that legal efforts aim to mitigate and ameliorate as much reproductive violence as possible. Indeed, the breadth of reproductive oppression demands that organizers, theorists, practitioners, and lawyers ensure we work effectively towards reproductive freedom and dignity for all.

HOW REPRODUCTIVE JUSTICE CAN INFORM INTERSECTIONALITY As discussed throughout this chapter, reproductive justice is grounded in intersectionality. Meanwhile, reproductive justice work can, in turn, inform intersectionality research, activism, and theorizing in various ways. First, reproductive justice highlights connections between different

Reproductive Politics

oppressive forces affecting people’s reproductive lives, as well as different aspects of reproductive violence people deal with. Reproductive justice also fosters analyses of what conditions people need to materially exercise their reproductive freedoms. Developing work that focuses on interconnecting issues and concerns, as well as interrelated oppressive forces, fosters complex analyses crucial to envisioning transformative possibilities. Second, reproductive justice activists’ and theorists’ work and writing is particularly attuned to appropriation (however intentional). They are keenly aware of how often the work of Indigenous women and women of colour is misused and have taken steps to mitigate this risk, for instance, through intersectionality scholarship and activist work that (a) defines and conceptualizes diverse strands of intersectionality activism and scholarship and (b) grounds intersectionality within the activism and writing of women of colour and Indigenous women. This leadership provides an example of an anti-appropriative stance that other intersectional thinkers can turn to. This is especially pressing in a time when the Canadian Institutes of Health Research is mainstreaming sex and gender analysis, and intersectionality is increasingly being evoked within various disciplines (Canadian Institutes of Health Research, 2018; Cho et al., 2013). Third, the reciprocal relationship between theory and activism and their responsiveness to emerging and shifting conditions within reproductive justice work is a model of praxis that many intersectionality theorists and activists can learn from. The deep, entrenched nature of interrelated oppressive forces must be analysed, but their shifts over time provide us with opportunities to theorize and act in ways that lend themselves to transformation. Working closely with activists (or being involved in actions) often highlight shifts in oppressive forces, shifts that at times provide openings to dismantle oppressive formations. Indeed, some of these lessons from reproductive justice organizing and activism are applicable to those outside of intersectionality scholarship and activism, and I gladly offer them to those who are looking for tools for analysis and action.

DISCUSSION QUESTIONS 1 What are three interconnected human rights that reproductive justice focuses on? How does this focus differ from a reproductive choice framework? 2 What are some of the reasons that reproductive choice and reproductive justice focus on different concerns and issues? 3 In this chapter’s analysis of the over-involvement of the Canadian child welfare system in Indigenous children’s lives, what does the author say are the factors that place Indigenous children at risk of apprehension? 4 What are some of the solutions Indigenous activists and their allies advocate for? What is one thing you can do personally to contribute to these solutions? 5 In early 2020, provincial and territorial governments enacted various public health measures to limit the spread of COVID-19. These varied by provinces and territories, but here are a few examples of common measures: • closing elementary and secondary schools for the remainder of the 2019/2020 school year, with some distance learning opportunities

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• closing school-based daycares • closing many public-facing businesses and services • limiting the size of public and private gatherings to 10 people in most cases • limiting international travel The federal government and provincial and territorial governments also introduced ­programs to mitigate the harms of these measures. Through a reproductive justice ­framework, analyse a few of these measures (and government responses). How might these measures impact various people’s reproductive freedom and dignity?

REFERENCES Aboriginal Affairs and Northern Development Canada. (2013). Aboriginal income disparity in Canada. https://publications.gc.ca/site/eng/9.697121/publication.html An Act respecting First Nations, Inuit and Métis children, youth and families. SC 2019, c. 24. https://laws.justice .gc.ca/eng/acts/F-11.73/page-1.html#h-1150615 Anderson, K. (2011). Life stages and Native women: Memory, teachings, and story medicine. University of Manitoba Press. Ballingall, A. (2018, February 1). Ottawa commits to new First Nations child welfare funding. The Star. https://www.thestar.com/news/canada/2018/02/01/ottawa-commits-to-new-first-nations-child-welfare -funding.html Beaumonis, Z., & Bond-Theriault, C. (Eds.). (2017). Queering reproductive justice: A toolkit. National LGBTQ Task Force. Blackstock, C. (2007). Residential schools: Did they really close or just morph into child welfare? Indigenous Law Journal, 6(1), 71–78. https://jps.library.utoronto.ca/index.php/ilj/article/view/27665/20396 Blackstock, C., Trocmé, N., & Bennett, M. (2004). Child maltreatment investigations among Aboriginal and non-Aboriginal families in Canada. Violence Against Women, 10(8), 901–916. https://doi.org/10.1177 /1077801204266312 Boonstra, H. D., & Nash, E. (2014). A surge of state abortion restrictions puts providers—and the women they serve—in the crosshairs. Guttmacher Policy Review, 17(1), 9–15. https://www.guttmacher.org/gpr /2014/03/surge-state-abortion-restrictions-puts-providers-and-women-they-serve-crosshairs Boyer, Y., & Bartlett, J. (2017). External review: Tubal ligation in the Saskatoon health region: The lived experience of Aboriginal women. Saskatoon Health Region. https://www.saskatoonhealthregion.ca/DocumentsInternal /Tubal_Ligation_intheSaskatoonHealthRegion_the_Lived_Experience_of_Aboriginal_Women_Boyerand Bartlett_July_22_2017.pdf Browne, A. J., & Fiske, J. A. (2001). First Nations women’s encounters with mainstream health care services. Western Journal of Nursing Research, 23(2), 126–147. https://doi.org/10.1177/019394590102300203 Canadian Child Welfare Research Portal. (n.d.). Canadian Human Rights Tribunal on First Nations child welfare. https://cwrp.ca/canadian-human-rights-tribunal-first-nations-child-welfare Canadian Institutes of Health Research. (2018). How to integrate sex and gender into research. http://www .cihr-irsc.gc.ca/e/50836.html Caring for First Nations Children Society & Nota Bene Consulting Group. (2009). Starting from a traditional place: Aboriginal operational and practice standards-practice standards redesign. https://icwrn.uvic .ca/wp-content/uploads/2013/08/Aopsi.pdf Cernetig, M. (1992, April 2). NWT orders abortion inquiry: Hospitals used no anesthetics. The Globe and Mail.

Reproductive Politics Cho, S., Crenshaw, K., & McCall, L. (2013). Toward a field of intersectionality studies: Theory, applications, and praxis. Signs: Journal of Women in Culture and Society, 38(4), 785–810. https://doi.org/10.1086 /669608 Crenshaw, K. (1991). Mapping the margins: Intersectionality, identity politics, and violence against women of color. Stanford Law Review, 43(6), 1241–1299. https://doi.org/10.2307/1229039 Davis, A. (2008). Racism, birth control, and reproductive rights. In N. Ehrenreich (Ed.), Reproductive rights reader: Law, medicine, and the construction of motherhood (pp. 86–93). New York University Press. de Leeuw, S., Greenwood, M., & Cameron, E. (2010). Deviant constructions: How governments preserve colonial narratives of addictions and poor mental health to intervene into the lives of Indigenous children and families in Canada. International Journal of Mental Health and Addictions, 8, 282–295. https://doi.org /10.1007/s11469-009-9225-1 Denison, J., Varcoe, C., & Browne, A. J. (2014). Aboriginal women’s experiences of accessing health care when state apprehension of children is being threatened. Journal of Advanced Nursing, 70(5), 1105–1116. https://doi.org/10.1111/jan.12271 Djuric, M. (2021, July 9). How Cowessess First Nation’s historical child welfare agreement with Canada and Saskatchewan works. CBC News. https://www.cbc.ca/news/canada/saskatchewan/how-cowessess-first -nation-child-welfare-agreement-works-1.6095470 Dyck, E. (2013). Facing eugenics: Reproduction, sterilization, and the politics of choice. University of Toronto Press. First Nations Child and Family Caring Society of Canada. (2005a). WEN:DE We are coming to the light of day. https://cwrp.ca/sites/default/files/publications/en/WendeReport.pdf First Nations Child and Family Caring Society of Canada. (2005b). WEN:DE The journey continues: The national policy review on First Nations child and family services research project: Phase three. https:// fncaringsociety.com/sites/default/files/docs/WendeJourneyContinues.pdf First Nations Child and Family Caring Society of Canada et al. v. Attorney General of Canada (for the Minister of Indian and Northern Affairs Canada) (No. T1340/7008). (2016). Canadian Human Rights Tribunal. Fiske, J. A., & Browne, A. J. (2006). Aboriginal citizen, discredited medical subject: Paradoxical constructions of Aboriginal women’s subjectivity in Canadian health care policies. Policy Sciences, 39(1), 91–111. https://doi.org/10.1007/s11077-006-9013-8 Goodwin, M. (2017). Troubling legislative agendas: Leveraging women’s health against women’s reproductive rights. https://www.acslaw.org/wp-content/uploads/2018/04/Troubling_Legislative_Agendas.pdf Government of Canada. (1996). Report of the Royal Commission on Aboriginal Peoples. http://publications .gc.ca/site/eng/9.819007/publication.html Green, J. (Ed.). (2007). Making space for Indigenous feminism. Fernwood Publishing. Halfman, D. (2011). Doctors and demonstrators: How political institutions shape abortion law in the United States, Britain, and Canada. University of Chicago Press. Hoover, E., Cook, K., Plain, R., Sanchez, K., Waghiyi, V., Miller, P., Dufault, R., Sislin, C., & Carpenter, D. O. (2012). Indigenous peoples of North America: Environmental exposures and reproductive justice [Commentary]. Environmental health perspectives, 120(12), 1645–1649. https://doi.org/10.1289/ehp.1205422 Hughes, T. (2013). The legacy of Phoenix Sinclair: Achieving the best for all our children. http://www .phoenixsinclairinquiry.ca/rulings/ps_volume1.pdf Hui, K., Angelotta, C., & Fisher, C. E. (2017). Criminalizing substance use in pregnancy: Misplaced priorities. Addiction, 112(7), 1123–1125. https://doi.org/10.1111/add.13776 Johnston, P. (1983). Native children and the child welfare system. Canadian Council on Social Development; James Lorimer & Company. Lavell-Harvard, D. M., & Lavall, J. C. (2006). “Until our hearts are on the ground”: Aboriginal mothering, oppression, resistance and rebirth. Demeter Press. Luna, Z. T. (2011). “The phrase of the day”: Examining contexts and co-option of reproductive justice activism in the women’s movement. Research in Social Movements: Conflict and Change, 32, 219–246. https://doi.org /10.1108/S0163-786X(2011)0000032013

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Holly A. Mckenzie Maracle, L. (1990). Bobbi Lee: Indian rebel. Women’s Press Literary. McKenzie, B., & Hudson, P. (1985). Native children, child welfare, and the colonization of Native people. In K. Levitt (Ed.), The challenge of child welfare (pp. 125–141). UBC Press. McKenzie, H. A. (2012). The different stories of Cree woman, Daleen Kay Bosse (Muskego), and Dakota-Sioux woman, Amber Tara-Lynn Redman: Understanding their disappearances and murders through media re-presentations and family members’ narratives [Master’s thesis, University of Regina]. oURspace Repository. http://hdl.handle.net/10294/3807 McKenzie, H. A. (2020). Indigenous women’s reproductive (in)justices and self-determination: Envisioning futures through a collaborative research project [Doctoral dissertation, University of British Columbia]. Open Collections. http://hdl.handle.net/2429/73316 McKenzie, H. A., Varcoe, C., Browne, A. J., & Day, L. (2016). Disrupting the continuities among residential schools, the sixties scoop, and child welfare: An analysis of colonial and neocolonial discourses. The International Indigenous Policy Journal, 7(2), 4. https://doi.org/10.18584/iipj.2016.7.2.4 Million, D. (2013). Therapeutic nations: Healing in an age of Indigenous human rights. University of Arizona Press. National Aboriginal Health Organization. (2008). Celebrating birth—Aboriginal midwifery in Canada. https://www.hhr-rhs.ca/index.php?option=com_mtree&task=viewlink&link_id=7780&lang=en National Aboriginal Council of Midwives, & Native Youth Sexual Health Network. (2014). NACM and NYSHN launch toolkit [Press release]. http://www.nativeyouthsexualhealth.com/may282014.pdf Native Youth Sexual Health Network, & Action Canada for Sexual Health & Rights. (2016). Joint submission to expert mechanism on the rights of Indigenous peoples in response for study on the right to health and Indigenous peoples, with a focus on children and youth. https://www.ohchr.org/Documents/Issues/IPeoples/EMRIP /Health/ActionCanadaSexualHealth%20Rights_NativeYouthSexualHealthNetwork.pdf Native Youth Sexual Health Network, & First Nations Child and Family Caring Society of Canada. (2012). Submission for Canada’s 2nd United Nations universal period review. http://www.nativeyouthsexualhealth .com/pressreleases.html Native Youth Sexual Health Network, & International Indian Treaty Council Joint Statement. (2013). Agenda item 7 (b) dialogue with the special rapporteur on the rights of Indigenous people. http://www .nativeyouthsexualhealth.com/nyshn7specialerapporteur.pdf Nelson, J. (2003). Women of color and the reproductive rights movement. New York University Press. R v. Morgentaler, (1988). 1 SCR 30, 19556 C.F.R. . Rebick, J. (2005). Ten thousand roses: The making of a feminist revolution. Penguin Canada. Ross, L. J. (2006). The colour of choice: White supremacy and reproductive justice. In INCITE, women of color against violence (Ed.), Color of violence: The INCITE! anthology (pp. 53–66). South End Press. Ross, L. J. (2017). Reproductive justice as intersectional feminist activism. Souls, 19(3). https://doi.org /10.1080/10999949.2017.1389634 Ross, L. J., & Solinger, R. (2017). Reproductive justice: An introduction. University of California Press. Ruhl, P. L. (2002). Disarticulating liberal subjectivities: Abortion and fetal protection. Feminist Studies, 28(1), 37–60. https://doi.org/10.2307/3178494 Sethna, C., Palmer, B., Ackerman, K., & Jonavicek, N. (2013). Choice, interrupted: Travel and inequality of access to abortion services since the 1960s. Labour/Le Travail, 71, 29–48. http://www.lltjournal.ca/index .php/llt/article/view/5689 Shaw, J. (2013). Full-spectrum reproductive justice: The affinity of abortion rights and birth activism. Studies in Social Justice, 7(1), 143–159. https://doi.org/10.26522/ssj.v7i1.1059 Silliman, J., Fried, M. G., Ross, L., & Gutiérrez, E. R. (2004). Undivided rights: Women of color organize for reproductive justice. South End Press. Sinclair, R. (2007). Identity lost and found: Lessons from the sixties scoop. First Peoples Child & Family Review, 3(1), 65–82. https://doi.org/10.7202/1069527ar

Reproductive Politics Sinha, V., Trocmé, N., Blackstock, C., MacLaurin, B., & Fallon, B. (2011). Understanding the overrepresentation of First Nations children in Canada’s child welfare system. In K. Kufeldt & B. McKenzie (Eds.), Child welfare: Connecting research, policy, and practice (pp. 307–322). Wilfred Laurier Press. Solinger, R. (2013). Reproductive politics: What everyone needs to know. Oxford University Press. Stote, K. (2015). An act of genocide: Colonialism and the sterilization of Aboriginal women. Fernwood Publishing. Stote, K. (2017). Decolonizing feminism: From reproductive abuse to reproductive justice. Atlantis, 38(1), 110–124. https://journals.msvu.ca/index.php/atlantis/article/view/4767 Suzack, C. (2010). Indigenous women and feminism: Politics, activism, culture. UBC Press. Tait, C. (2009). Disruptions in nature, disruptions in society: Aboriginal peoples of Canada and the “making” of fetal alcohol syndrome. In L. J. Kirmayer & G. G. Valaskakis (Eds.), Healing traditions: The mental health of Aboriginal peoples in Canada (pp. 196–218). UBC Press. Trocmé, N., Fallon, B., MacLaurin, B., Sinha, V., Black, T., Fast, E., Felstiner, C., Hélie, S., Turcotte, D., Weightman, P., Douglas, J., & Holroyd, J. (2010). Canadian incidence study of reported child abuse and neglect 2008 (CIS-2008): Major findings. https://cwrp.ca/sites/default/files/publications/en/CIS-2008-rprt-eng.pdf Trust Black Women. (2018). Solidarity statement with Black Lives Matter. https://trustblackwomen.org /solidarity-statement Walkem, A. (2015). Wrapping our ways around them: Aboriginal communities and the Child, Family and Community Service Act (CFCSA) Guidebook. https://cwrp.ca/publications/wrapping-our-ways-around -them-aboriginal-communities-and-child-family-and-community Walsh, M. W. (1992, April 3). Abortion horror stories spur inquiry: Canada: Questions raised after women allege hospital denied them anesthesia as punishment. Los Angeles Times. https://www.latimes.com /archives/la-xpm-1992-04-03-mn-273-story.html Williams, K. (Writer). (2014, July 1). Criminalization of Indigenous peoples and reproductive justice [Audio podcast episode]. In Migrant Matters Radio. Rabble.ca. http://www.rabble.ca/podcasts/shows/migrant -matters/2014/07/criminalization-indigenous-peoples-and-reproductive-justice Women’s Earth Alliance, & Native Youth Sexual Health Network. (2016). Violence on the land, violence on our bodies: Building an environmental response to environmental violence. http://landbodydefense.org /uploads/files/VLVBReportToolkit2016.pdf Woodworth, S. (2012, April 26). M-312: Special committee on subsection 223(1) of the Criminal Code. Canada. Parliament. House of Commons. Hansard 111, 41st Parliament, 1st session. https://www .ourcommons.ca/DocumentViewer/en/41-1/house/sitting-111/hansard#Int-7539857 Yee, J. (2011). Making the connections at the Native Youth Sexual Health Network: Sexual violence and sex education. Ending Violence Association of BC, Spring, 19–24. https://endingviolence.org/publications/eva -bc-special-edition-journal-national-victims-of-crime-awareness-week-spring-2011/

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CHAPTER SEVEN

Decolonizing Research Colleen Varcoe and Holly A. McKenzie

The roots of decolonizing research are embedded in Indigenous people’s efforts to counter the ­oppressive and colonizing processes that accompany much research. Colonial processes and ­discourses were and continue to be used to affect Indigenous communities and bodies in multiple and complex ways that are racialized, gendered, and classed. Colonial processes also underpin much of global migration and are integral to diverse interests such as resource extraction industries, pharmaceutical industries, arms manufacturing, and the illegal drug trade. Research often is a tool of, or at least complicit with, colonial processes. The implication, then, is that all research concerned with human well-being should be scrutinized for how processes reproduce and sustain inequities and injustices, and foster researchers’ efforts to decolonize practices. In this chapter, we argue that while employing intersectional approaches allows us to attend to how multiple oppressive forces intertwine, decolonizing approaches are required to attend to how health is shaped by historical and ongoing conquest, and is interwoven with othering processes, such as those based on gender, race, religion, and class. First, we provide a brief overview of the genealogy of decolonizing research. Second, we c­ onsider the complementary nature of intersectional theoretical perspectives and decolonizing approaches. Using examples from our research on violence against women and reproductive justice, we critically analyse the imperative for and challenges of taking a decolonizing stance within community and academic research contexts. We offer ideas for negotiating and meeting these challenges and consider how engaging decolonizing approaches can strengthen intersectionality theory and research. We argue that intersectional and decolonizing approaches are interrelated and that e­ ngaging both approaches together in theory and praxis is productive. Decolonizing approaches are imperative to and should be foregrounded in research involving Indigenous people and are useful to any research with intentions towards social justice because they integrate attention to colonizing and racializing processes. In other words, regardless of whether research is explicitly focused on ­Indigenous people, all intersectional research should engage decolonizing approaches because such approaches bring historical and ongoing colonizing processes into the analysis. Thus, decolonizing and decolonization are relevant to all research oriented to social justice and transformative visions and actions.

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DECOLONIZING RESEARCH In analysing historical and ongoing colonial processes many people have employed such labels as decolonizing, anti-colonial and postcolonial. The label and definition of postcolonial has been heavily contested. Some theorists take the position that postcolonial theorizing is only applicable where colonizers “went home” and is not adequate to address the dynamics of ongoing settler-colonialism in locations such as Canada, the United States, Australia, and New Zealand (Code, 2003). Further, a number of Indigenous scholars have critiqued the term postcolonial for implying colonization is in the past rather than ongoing, shifting in formation depending on context (Smith, 2012). The turn to decolonizing responds to the risk of postcolonial analysis being construed as implying that colonization is past, despite the clear intention of most postcolonial thinkers to analyse both historical and ongoing colonizing processes, and to the risk of theorizing colonizing process without a commitment to transformation. This latter risk is not mitigated simply because research is labelled decolonizing; as Tuck and Yang (2012) wrote, “decolonization is not a metaphor” (p. 1). Consequently, many researchers articulate decolonizing research to be research that both analyses and seeks to dismantle colonial structures and relations and as a lens oriented towards reclaiming or asserting Indigenous ways of knowing to analyse, make meaning, and take action (Holmes, 2009; Smith, 2012). Some Indigenous researchers have claimed the label and praxis of ­Indigenous research, fashioning research frameworks grounded in Indigenous principles and values with ­decolonizing aims (Kovach, 2009; Wilson, 2008). To avoid colonial tendencies to strict segmentation and categorization, we will not stringently define and separate decolonizing, anti-colonial, and postcolonial from Indigenous research, if this is even possible (Manning, 2009). Instead, we offer what we consider are key tenets of decolonizing research, recognizing the central contributions of Indigenous theorists. We consider decolonizing research to be research that reveals, challenges, and seeks to disrupt/ transform colonial structures and relations. In contrast to much of public discourse that views colonialism to be in the past, epitomized by residential schools (Coulthard, 2014), decolonizing research makes visible how past colonial violence continues to reverberate through discourses and processes today. As such, present colonial violence and the impacts of historical colonial violence are made visible. Further, racialization and racist processes are understood in relation to colonialism and disrupted through decolonizing approaches. Familiar and emerging forms of racializing and racism, intertwined with other processes (such as the contemporary Western anti-Islam movement) are understood critically in relation to power within corporate, national, and global structures and processes. Decolonizing research is a transformative praxis, with aims to contribute to the larger goal of decolonizing relations, processes, and institutions. As such, it is action-oriented, involves Indigenous people, and engages Indigenous knowledges. We draw on our decades of research with both Indigenous and non-Indigenous people and communities to illustrate. For example, as shown in figure 7.1, the Rural Aboriginal Maternity Care Project was a full partnership with Indigenous women from diverse communities that demanded attention to where and on whose territory the research was conducted, with whom, and how it was conducted (Varcoe et al., 2011; Varcoe et al., 2013). With this understanding of decolonizing research in mind, we trace a brief genealogy of decolonizing research.

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Figure 7.1.  A decolonizing team.The Rural Aboriginal Maternity Care Project was a full partnership among Indigenous women leaders and academic researchers. Photo Credit: Colleen Varcoe

A GENEALOGY OF DECOLONIZING RESEARCH Smith (2012) made visible the problematic relationship between colonial ideologies, research, and policy, identifying the danger of “creeping policies that intruded into every aspect of our lives, ­legitimated by research, informed more often by ideology” (p. 3). Indigenous people have met these dangerous conditions with resistance, intervening into colonizing research as long as colonizers have been doing research. For instance, during the nineteenth and early twentieth centuries, many Indigenous people provided limited or misinformation when trained and untrained anthropologists hurried to document and describe the “vanishing Indian”’ in North America (Bird, 1999; Cotera, 2010). Further, Indigenous people working on academic research teams and working with academic researchers have been using decolonizing and Indigenous approaches long before such practices were named. During the early twentieth century, a university-educated Dakota woman, Ella Deloria, worked with leading anthropologists, Franz Boas, Ruth Benedict, and Margaret Mead. Through this work, she challenged misrepresentative texts and employed a methodology “that embraced the rules of kinship and capitalized on her identity as a Dakota,” while dealing with suspicion towards her objectivity and her precarious position as a non-PhD Indigenous woman working in academic research (Cotera, 2010, p. 51). During the latter twentieth century global shifts (a) away from race-based science and (b) towards establishing ethical codes to prevent abuse within research interacted with a burgeoning number of Indigenous academic researchers, along with feminists, people of colour, queer, and other critical scholars, questioning and critiquing

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standard research practices to foster decolonizing, critical, and Indigenous research praxis (Smith, 2012). All the while, Indigenous people have sustained and protected their own techniques to gather, generate, and translate knowledge in the face of colonial policies (Absolon, 2011). In her text Decolonizing Methodologies: Research and Indigenous Peoples, Smith (1999) analysed the relationship between research and colonial processes, in particular how colonial views of Indigenous people have permeated research and been used to justify colonial policies, as referenced above. As well, Smith offered examples of Indigenous research projects and approaches. The first edition of her text was followed by an exponential growth in literature regarding decolonizing and Indigenous methodologies in theory and practice (e.g., Absolon, 2011; Anderson, 2000, 2011; Baydala et al., 2006; Chilisa, 2012; Fornssler et al., 2014; Goudreau et al., 2008; Kovach, 2009; Lavallée, 2009; Martin-Hill, 2008; Simpson, 2004, 2007, 2014; Smith et al., 2005; Smye & Varcoe, 2005; Tait, 2008; Walter & Anderson, 2013; Walters et al., 2009; Wilson, 2008). Since Decolonizing Methodologies was first published, researchers and communities have continued to negotiate the shifting terrain of decolonizing and Indigenous scholarship. For instance, who can do decolonizing, ­anti-colonial, and Indigenous research? Researchers such as Kovach (2009) and Smith (2012) suggested that non-­Indigenous and Indigenous researchers can engage together in these processes; however, some ­Indigenous scholars argue that only Indigenous scholars can “do” decolonizing research. Our stances, as an Indigenous person (Varcoe), not by virtue of my cultural upbringing but because my biological father was Indigenous, and by virtue of my own experiences of race-based discrimination, and as a white-settler (McKenzie), who grew up on Treaty Four territory homeland of the Métis, are that the responsibility for decolonization lies with both Indigenous and non-Indigenous people. Spurred by such work in diverse academic and non-academic organizations and communities, policies and practices have begun to slowly shift. For example, in Canada First Nations people first articulated a set of principles that applies the concept of community self-determination to research practices and processes in a 1998 National Steering Committee of the First Nations Regional Longitudinal Health Survey meeting (Schnarch, 2004). These principles, now known by the acronym OCAP, indicate that Indigenous communities own, control, access, and possess research processes, data, and knowledge generated from research. These principles are not prescriptive rules. Research teams work with communities to determine how to practise these principles in specific research and community contexts (Baydala et al., 2006; Schnarch, 2004). Indigenous communities in various locations across Canada have also created ethics boards, processes, and guidelines to govern ­research done in their territories with their community members. These processes are designed (a) for communities to protect themselves from objectifying and exploitative colonial practices, (b) to reflect local contexts, knowledges, and ways of relating, and (c) to insure the relevance, utility, and application of the knowledge developed through research to Indigenous communities and people. Further, academic institutions have created ethical guidelines specific to working with Indigenous communities (University of Victoria Faculty of Human & Social Development, 2003). Notably, the Canadian Institutes of Health Research (2007) Institute of Aboriginal ­People’s Health developed a policy to guide funding entitled “CIHR Guidelines for Health Research I­ nvolving Aboriginal People” through consultation with Indigenous communities and researchers, which were in effect from May 2007 until December 2010. In a parallel process, the Interagency Panel on Research Ethics developed Chapter 9, “Research Involving the First Nations, Inuit and Métis Peoples of

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Canada” of the Tri-Council Policy Statement: Ethical Conduct for Research Involving ­Humans, which came into effect in 2010 (Canadian Institutes of Health Research, Natural Sciences & Engineering Research Council of Canada, & Social Sciences and Humanities Research Council of Canada, 2018). Both Chapter 9 and the CIHR’s former guidelines emphasize building community engagement, following community processes, and creating an “ethical space” where Indigenous communities and academic researchers with different life experiences and worldviews can come together and engage respectfully (Castellano & Reading, 2010; Ermine, 2007). Increasingly, Indigenous scholars are asserting explicitly Indigenous theoretical and methodological approaches, and adapting frameworks so they reflect Indigenous people’s realities and knowledge, critical interventions that can be seen as inherently decolonizing. An emerging example is the work of Clark who offers Red intersectionality as a framework for addressing the complex challenges related to the intersection of colonial gender-based violence in the lives of Indigenous children and youth. Clark and Hunt (2011) developed an approach to research that foregrounds Indigenous ­sovereignty/ nationhood and theorizes how colonialism, including reserve policies and politics, lateral violence, and identity politics, shape the lives of children and youth. Clark built upon this to develop a Red ­intersectionality-based approach to policy analysis to highlight the role of gendered colonialism (Clark, 2016a, 2016b) and used this approach in combination with methodological framework of Steseptekwle-Secwepemc storytelling to study Indigenous healers’ work with young people experiencing violence. Importantly, in doing so, “the stories reveal and amplify Indigenous agency while refusing the colonial gaze, which assumes and demands Indigenous p ­ eople are in need of help or saving” (Clark, 2017, p. iv). Similarly, Greenwood et al.’s (2015) edited collection effectively reconceptualizes determinants of I­ ndigenous health. Throughout this text, Indigenous and non-Indigenous allies (a) foreground ongoing colonization as the primary determinant of Indigenous people’s health in settler-colonial ­societies, and (b) ground their understandings of Indigenous health within Indigenous ways of knowing and being. In doing so, contributors expand understandings of determinants of Indigenous health “beyond the social,” a­ ddressing the important interconnected roles of spirituality, relationships to land, geography, history, culture, language, and knowledge systems. This complex framework fosters further understandings of, and relevant responses to, Indigenous people’s (ill)health. In spite of this burgeoning body of work and the actions Indigenous people and communities have taken to educate researchers, change policies, and lead ethical research, much research continues to perpetuate colonial myths, practices, and processes, explicitly and implicitly. Thus, it is necessary to continue to analyse research processes to determine whether and how they reproduce and sustain inequities and injustices, and foster researchers’ aims to decolonize relations and practices. Further, it is critical to situate research projects and processes in relation to transformation and Indigenous self-determination.

DECOLONIZING RESEARCH AND WOMEN’S HEALTH As Hankivsky (chapter 1, this volume) has argued, challenges to the primacy of gender and the binary of men/women call into question the very foundations of the field of “women’s health.” The particular case of Indigenous women’s health exemplifies these issues. While Indigenous women’s

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experiences are, of course, gendered, they are simultaneously racialized and classed within historical and ongoing raced-based colonial domination of Indigenous people. Colonial processes and discourses have and continue to affect Indigenous communities and bodies in multiple and complex ways that are racialized, classed, and gendered, but these influences are inseparable. For instance, Hunt (2015) showed how colonial institutionalization of hetero-patriarchy has marginalized Indigenous women, disrupted Indigenous women and men’s relations, and erased traditional and contemporary Indigenous identities that do not “fit” this gender binary, including trans*1 and Two-Spirit people. Thus, an intersectional theoretical perspective that makes visible these interrelationships is needed when considering Indigenous women’s health. An intersectional approach, however, does not necessarily imply a decolonizing approach. The oppressive forces and social locations considered within an intersectional lens are variable. Indeed, in keeping with mainstream approaches to the social determinants of health and the social determinants of inequity, which identify “Aboriginal status” as a “determinant,” Indigeneity is sometimes framed as a social location without attention to what determines this social location and what ­determines the health inequities experienced by Indigenous people. The category Indigenous refers to peoples who are original inhabitants of specific lands and are subjected to diverse colonizing experiences. For instance, among Indigenous people of Canada, there is at least as much diversity within such a category as between those within and those without such a category. For example, the term Indigenous in Canada encompasses over 50 different language groups (Cook & Howe, 2004; Grabe et al., 2015; Norris, 2008). Critically examining the framing of “Aboriginal status” as a health determinant that “explains” health inequities between Indigenous and ­non-Indigenous ­people living in Canada, it becomes apparent that determinants of Indigenous people’s health are more accurately identified as colonial processes and policies, racism, and Euro-centric systems, including social ­services, criminal justice, and health care systems. As Reading (2015) explained, not only must the interconnections among the proximal (e.g., health behaviours, income, social status), distal (e.g., ­systemic discrimination; the imposition of the reserve system, with consequent poverty; lack of ­access to drinking water; and historical and ongoing apprehension of Indigenous children through the residential school system and more recently child welfare,), and intermediate determinants (such as health care, lack of access to quality education, labour markets, and the social services that connect them) be understood, but colonial erosion of the philosophical, political, ideological, economic, and social foundations (which includes the world views, spirituality and self-determination that sustained Indigenous people for millennia) must also be stopped and attenuated. Thus, a decolonizing approach is essential for intersectional research meaningfully involving Indigenous people. Further, a decolonizing approach is required within all intersectional scholarship, regardless of whether Indigenous people or “racialized others” are the explicit focus of enquiry, because it serves to decentre gender by foregrounding the intertwined dynamics of racism, conquest, and appropriation. It fosters a more thorough analysis of the relationship between imperialism and other interlocking forces of oppression that intersectional scholarship considers. In particular, Stoler (1995) articulated how imperial discourses not only divide colonizer and colonized but also divide “metropolitan observers from colonial agents, and bourgeois colonizers from their subaltern compatriots designated certain cultural competencies, sexual proclivities, psychological dispositions

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and cultivated habits. These in turn defined the hidden fault lines—both fixed and fluid—along which gendered assessments of class and racial membership were drawn” (p. 8). Further, conducting research with an eye towards decolonization prompts researchers and scholars to think through (and work to create the conditions for) meaningful transformation of institutions, processes, and relations that disrupt and undermine oppressive conditions, including colonialism. So, bringing a decolonizing approach to research not initially conceptualized as either decolonizing or specific to Indigenous people serves a critical purpose. For example, engaging with a decolonizing approach within the study of communication between health care providers and women during prenatal diagnoses of fetal anomalies can highlight both the inequities Indigenous women face and how colonizing processes privilege particular women and marginalize others (Cender, 2018). Thus, ­intersectionality scholarship is enhanced by decolonizing approaches; decolonizing approaches are enhanced by intersectional theories – we argue that they are inseparable. Thus, scholars, researchers, and practitioners with a concern for gender, equity, and social justice should engage them both.

CONTEMPORARY APPROACHES TO INTEGRATING INTERSECTIONALITY AND DECOLONIZING APPROACHES As outlined in previous chapters of this book, intersectional approaches displace gender as a primary category of analysis and focus analysis on interlocking forms of social and structural o­ ppression and on the body and identity. In what follows, we offer two exemplars that illustrate the importance of and possibilities for integrating intersectionality and decolonizing approaches, suggesting that doing so is reciprocally beneficial.

Exemplar 1: Interpersonal Violence Concern for violence against women has brought much needed attention to gender-based violence. It is without question that women often are violated because they are women, and that those who are positioned as women bear the greatest burden of interpersonal violence globally (Palermo et al., 2014; Romito & Grassi, 2007; Venis & Horton, 2002). It continues to be clear that gender inequality and gender norms are central to sustaining and perpetuating violence against women (­Abramsky et al., 2011; Devries et al., 2013; VanderEnde et al., 2012). However, the o­ ver-determinant use of gender as a primary category of analysis, while much critiqued, continues to have pernicious effects. For example, those involved with women’s shelters often struggle with how to provide service to trans* women. The limitations to approaching violence primarily through the lens of gender are illuminated by an intersectional approach. First, the field of violence against women has tended to homogenize women’s experiences, overlooking the diverse experiences of women as they are simultaneously positioned within oppressive forces, such as racism, (hetero)sexuality, ableism, classism, and so on. Second, while attention to women’s experiences of violence within research, policy, and practice has brought much needed resources to support some women, women who are in greatest need are often least served. Again, Indigenous women exemplify this situation. Canada has a particularly

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grievous record, with Indigenous women experiencing higher rates of intimate partner violence (IPV) (Daoud et al., 2013; Pedersen et al., 2013) than the general population and with hundreds of Indigenous women either murdered or missing at rates at least 4.5 times as high as for the general population (Royal Canadian Mounted Police, 2015). Similarly, trans* persons experience both hate crimes and IPV at rates far higher than the general population (Barrett & Sheridan, 2017; Barrett & St. Pierre, 2013; Martin-Storey et al., 2018). The emphasis on women and the conflation of gender with women have overshadowed the effects of patriarchal gender norms that enforce strict gender binaries on men, women, and Two-Spirit and trans* people. Further, it has overshadowed the horrendous interpersonal violence suffered by people of all genders because of their social positioning at the intersection of multiple forms of oppression. Indigenous people often experience significant interpersonal violence because they are Indigenous, and such racialized victimization intersects with vulnerabilities that arise from policy-enforced poverty and other forms of disadvantage. Similarly, trans* people often experience violence because of their gender identities and expressions. While an intersectional lens draws attention to intersecting forms of oppression, such a lens may be taken up in ways that are insufficient to understanding the complex dynamics underpinning ­violence against women. For instance, trans* people’s experiences of violence in Canada are shaped by both homophobic and transphobic violence across the globe, queer and trans* m ­ igrations from the global South to Canada, and the inadequacies of domestic immigration law and antidiscrimination law (Ashley, 2018; Hopkinson et al., 2017; Lee, 2018). An intersectional approach that does not pay specific attention to decolonizing and colonial relations often marginalizes Indigenous queer and trans* people’s experiences within anti-violence discourse. Bringing a decolonizing analysis into conversation with intersectionality can disrupt the marginalization of Indigenous queer and trans* people and lead to “critical questions about non-Indigenous queer and trans claims for safe space, rights and belonging in the context of ongoing colonial dispossession” (Hunt & Holmes, 2015, p. 155). Further, a decolonizing approach draws explicit attention to how material conquest and other colonial processes harm people of all genders in various ways. Although attention to socioeconomic status is important, a recent analysis of the World Health Organization (WHO) multi-country study illustrates the need for a complex understanding. Kiss et al. (2012) examined gender-based violence and socioeconomic inequalities, finding that w ­ omen’s risk of IPV did not vary across neighbourhood socioeconomic conditions and their risks were not influenced by individual socioeconomic characteristics, leading the researchers to conclude that while poverty reduction will improve women’s lives in many ways, violence prevention efforts should focus on gender norms. In a Canadian context, Daoud et al. (2013) examined the contribution of socioeconomic position (SEP) to the higher levels of violence against Indigenous women versus non-Indigenous women. Although they found that SEP was a significant contributor to the difference, SEP did not fully explain the disparity, thus supporting the need for attention to the colonial processes and related factors such as racism and community social resources. A decolonizing approach is required to deepen attention to complexity. When Indigenous women experience gendered violence, it is embedded in racist colonial processes and policies, with analyses showing that higher levels of violence against Indigenous women are attributable to those policies and processes (Brownridge, 2008; Daoud et al., 2013; Pedersen et al., 2013).

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Similarly, those who are refugees experience high levels of violence, but this violence must be understood at the confluence of material conquest and racialization as these intersect with gender. That is, refugees fleeing the violence of war, often conducted in pursuit of control over material resources, experience violence in gendered ways shaped by the racism that often accompanies such war. For example, women in Sri Lanka and those who are refugees from Sri Lanka to Canada experience IPV within the context of the racialized violence of war (Guruge et al., 2012; Guruge et al., 2017). To simply examine gender-based violence or to do so employing an intersectional lens at the level of the individual (considering individual socioeconomic status, race, and so on) without an analysis of the colonial processes that depend on racism (in this case Tamil, Sinhalese) risks u ­ nder-analysing the contributions of structural violence to gender-based violence. Thomas and Kamari Clarke (2013) called for scholars to go beyond articulating the intersections among ethnicity, gender, and sexuality, with attention to racializing processes and to “the way that ­economic and political processes not only have been managed through ideas about race but also have played out in relation to pre-existing social relations of inequality, poverty, and global exclusion” (p. 305). Similarly, MacManus (2015), drawing on the experiences of women in Argentina and Mexico, called for attention to the historical, economic, and geopolitical realities within which violence occurs. A decolonizing approach brings such analytical possibilities to understanding violence against women and most importantly mitigates against dangerous tendencies to individualize ­experiences of violence, including constructing “men’s violence” as individual pathology, and d ­ rawing impermeable distinctions between intimate interpersonal violence and violence in its myriad structures and forms. Countless examples from Canada (Berman et al., 2009; Bingham et al., 2014; Varcoe & Dick, 2008) and around the globe (e.g., Caxaj et al., 2013; Caxaj et al., 2014; Grabe et al., 2015) ­illustrate that understanding and addressing violence against women must encompass understanding the social structures that perpetuate gendered hierarchies and maintain women’s susceptibility to ­experiencing violence worldwide. Decolonizing approaches draw attention to how colonial processes continually disrupt gender dynamics and impose patriarchal social order. Whether examining the historical dispossession of Indigenous women in what is now Canada, or the contemporary dispossession of Indigenous women in resource-extraction communities around the globe, or the experiences of racialized diaspora fleeing wars (which invariably involve material conquest), the intersection of wealth appropriation and racializing processes requires understanding to reveal how women are rendered vulnerable to violence and how that vulnerability might be best mitigated. Feminist activists and their allies have long fought against the simplistic challenge of “men are abused too.” Intersectionality adds complexity to the analysis of violence, helping to refuse the male/female binary and to consider how individuals and groups are positioned in multiple ways that include but are not restricted to various gender positions. By fostering complex analyses of power, intersectionality offers ways to do research without putting the focus on the spectacle of individual suffering. Instead, intersectionality shifts our attention to how social structures and processes shape individual experiences and facilitates an accounting of the gendered nature of violence without essentializing women or men (Žižek, 2008) or excluding those who do not align with the gender binary. Engaging decolonizing approaches deepens our analysis of contexts of history, conquest, and racializing processes.

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Exemplar 2: Reproductive Justice Reproductive rights and “choice” research and organizing requires a fundamental reconceptualization informed by intersectionality and decolonizing theory and the work of reproductive justice activists and organizers. Conversations within government, policy, media, and research r­egarding reproductive choice and rights in North America continue to focus on legalization and ­access to birth control and abortion services (Ross, 2006a; Saurette & Gordon, 2013; Shaw, 2013; ­Silliman, Fried, Ross, & Gutiérrez, 2004; Smith, 2009). Luna (2011) argued that “the language of the r­ eproductive rights [or reproductive choice] has cultural resonance with many women who have evidence that, but for their gender, they could participate fully in society” (p. 234). Women of colour have long pointed to the limits of these conversations, illustrating how the economic, ­social, and discursive conditions that (partially determine) choice are rendered invisible. Further, women of colour have long theorized the relationship between white supremacy, colonization, and the mainstream reproductive rights movement and services. For instance, reproductive technologies such as the birth control pill and inter-uterine devices (IUDs) were first tested on racialized women living in poverty. Further, some of the early advocates for women’s access to abortion and birth control were also proponents of eugenics, an ideology that has had material consequences for many ­Indigenous women; women of colour; Two-Spirit, trans*, and queer people; people living in poverty; and people who are differently abled. During the early and mid-twentieth century in North America, doctors deemed many Indigenous women unfit to parent and subjected them to coercive sterilizations. Coercive sterilizations were facilitated by some provincial and state legislation, as well as eugenic attitudes among doctors, scientists, government officials, and other community members (Dyck, 2013; Stern, 2005; Stote, 2015). Reproductive injustices informed by eugenic ­ideology continue (Boyer & Bartlett, 2017; Native Youth Sexual Health Network & Action Canada for Sexual Health & Rights, 2016), and historical and contemporary stories of coercive sterilization of ­Indigenous women within state institutions continue to emerge (Adam, 2015; Boyer & Bartlett, 2017; Ross, 2006a; Silliman et al., 2004; Smith, 2002; Stote, 2012, 2015). Women’s rights to mother, and Two-Spirit, trans*, and queer people’s right to parent, have not been a focal point within reproductive choice organizing, policy discussions, and research, largely because white, middle-class, heterosexual women are encouraged to mother within Euro-Western Canadian society, and therefore this right has largely been taken for granted. Reproductive rights organizing, community work, and research by women of colour does not take this right for granted and instead recognizes the interrelationships between reproductive violence that denies women’s right to mother and violence that denies women’s rights to prevent and terminate pregnancies. Some advocacy and community work by women of colour has centred on decriminalizing abortion and increasing access to abortion, ending sterilization abuses, increasing access to midwifery, ending and mitigating environmental violence and its effects on maternal and child health, ending criminalization of pregnant women dealing with addictions, and ending colonial, racist, and sexist child welfare processes and policies (Hoover et al., 2012; Native Youth Sexual Health Network & International Indian Treaty Council Joint Statement, 2013; Nelson, 2003; Silliman et al., 2004; Yee, 2011; ­Women’s Earth ­Alliance & Native Youth Sexual Health Network, 2016). As part of this ongoing work, a small group of women of colour from the United States have been participating in international

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and global feminist events, conferences, and conversations, one of these being the ­International ­Conference on ­Population and Development (ICPD) in Cairo, Egypt. ICPD is viewed as a landmark for reconceptualizing human rights and moving beyond liberal notions of abstract human rights with which a state should not interfere. At the ICPD, states were held responsible for creating the conditions (through services, supports, other policies, and laws) in which women and girls can materially ­exercise their reproductive rights. Informed by their experience attending the ICPD and witnessing the advocacy work by women from various locations (Ross, 2006a), women of colour articulated and defined reproductive justice shortly afterwards, grounded in a human rights framework and intersectionality feminism. Ross 2006(b), one of the founding members of S ­ istersong: Women of Color Reproductive Justice Collective, articulated three commonly cited principles of reproductive justice (see, for instance, Hoover, 2017; Johnstone, 2016; Stettner, 2016): For Indigenous women and women of colour it is important to fight equally for (1) the right to have

a child; (2) the right not to have a child; and (3) the right to parent the children we have, as well as to control our birthing conditions, such as midwifery. We also fight for the necessary enabling conditions to realize these rights. (p. 14)

Reproductive justice continues to be rearticulated in relation and response to the shifting political landscape. For instance, Beaumonis and Bond-Theriault (2017) recently released a report and toolkit exploring the relationship between the reproductive justice and LGBT movements. As Beaumonis and Bond-Theriault (2017) stated, “There exists a ‘natural alliance’” between these two movements, and these movements can work together to foster everyone’s rights to sexual health and bodily autonomy, including the right to parent free from violence (p. 6). Using a reproductive justice framework in research not only makes visible particular people’s experiences and how these experiences are shaped by interlocking oppressive forces and conditions, but also how a particular system (e.g., child welfare) and the supports and services available within that system interrelate with and shape people’s experiences or choice to engage with or avoid other systems (e.g., health care) (Boyer & Bartlett, 2017; Denison, Varcoe, & Browne, 2014). For instance, while safe haven laws in the United States are often discursively framed as saving infants from “bad mothers” and delivering them to “good mothers,” Oaks (2015) pointed out these dominant discourses do not “acknowledge the complexities of pregnancy and motherhood experiences and unequal ­social support available to women and girls within our society” (p. 5). As another example, many ­researchers continue to analyse particular women’s, girls’, and Two-Spirit and trans* people’s access to, and ­experience with, abortion and birth control as discrete issues or in relation to sexual health ­education resources and community views of abortion and birth control (see, for instance, Cano & Foster, 2016; Foster et al., 2017; Sentha & Doull, 2013; Sentha et al., 2013). However, the relationships among access to birth control, abortion, and sexual violence are often unexamined, as are the supports for parenting available to women, girls, and Two-Spirit, and trans* people (Gurr, 2015). Grounding our research in intersectionality-informed reproductive justice means making these connections; centring women of colour, Indigenous women, other marginalized women, and TwoSpirit and trans* people within this work; and addressing the interlocking oppressive factors that shape whether people can materially exercise their reproductive rights. Decolonizing theory can

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foster researchers’ understanding of how ongoing colonial processes continue to shape women’s, girls’, and Two-Spirit and trans* people’s reproductive self-determination and different pathways to work towards meaningful transformation. Analysing how women’s right to mother has been and continues to be denied highlights the necessity of decolonizing approaches within reproductive justice work. Indeed, using a decolonizing lens foregrounds the interconnections between coercive practices related to sterilizations, abortion procedures, birth control (Boyer & Bartlett, 2017; Stote, 2012), the state-sanctioned apprehension of Indigenous children through residential schools, the Sixties Scoop, the over involvement of the child welfare system in Indigenous families today, and Canadian claims of sovereignty over ­Indigenous lands (Blackstock, 2007; Landertinger, 2011; McKenzie et al., 2016; Sinha et al., 2011; Sinha et al., 2013; Native Youth Sexual Health Network & First Nations Child & Family C ­ aring Society of Canada, 2012). In particular, the enduring over-involvement of the child welfare system in ­Indigenous families must be understood in relation to colonial policies and relations, in particular the apprehension of Indigenous children through residential schools and other colonial policies (Milloy, 1999; Truth & Reconciliation Commission of Canada, 2015); chronic underfunding of First ­Nations child welfare and family service agencies and social services (Auditor General of Canada, 2008, 2011; Canadian Child Welfare Research Portal, n.d.; Canadian Human Rights ­Tribunal, 2016; First Nations Child & Family Caring Society of Canada, 2005a, 2005b; ­McDonald & Ladd, 2000); the eurocentrism of provincial legislation and risk assessment tools (de Leeuw et al, 2010; McKenzie et al., 2016; Walkem, 2015); and stereotypes that frame Indigenous mothers as irresponsible and prone to addictions (Browne & Fiske, 2001; de Leeuw et al., 2010; Dell & Kilty, 2012; Tait, 2009). Employing a decolonizing lens shifts our analytic approach within reproductive justice research in numerous ways, two of which are key. First, as Silliman et al. (2004) related, for Indigenous women “reproductive rights struggles are part of the struggles for sovereignty and land” (p. 123). Indeed, a decolonizing lens brings into focus the relationship between violations of Indigenous people’s rights to free, informed, and prior consent over decisions related to Indigenous lands and Indigenous bodies, including Indigenous women’s, girls, and Two-Spirit and trans* people’s reproductive decisions (Women’s Earth Alliance & Native Youth Sexual Health Network, 2016). For instance, the Native Youth Sexual Health Network work with the Women’s Earth Alliance (2016) demonstrated multiple ways the resource extraction industries across North America ­impact ­Indigenous women’s and young people’s safety and health. Second, a decolonizing lens makes visible how colonial relations locally and globally shape ­heterosexist, classist, ableist, and racialized notions of who is an “ideal mother” and who is ­positioned as a “deviant mother” within a nation-state. This binary of ideal/deviant motherhood hinges on the notion of the ideal or “natural” (nuclear and bourgeois) family, which further naturalizes hetero-­patriarchal government structures and appropriation of Indigenous lands (Emberley, 2001; Landertinger, 2011; Stoler, 1995). As such, the erasure and marginalization of Two-Spirit and LGBT identities, caregiving roles, and kin relations within and beyond Indigenous communities is part of the colonial project (Driskill et al., 2011; Evans-Campbell et al., 2007; Hunt, 2015). These constructs of ideal motherhood, ideal (nuclear and bourgeois) families, and ideal citizens all constrain reproductive justice for Indigenous women, women of colour, and Two-Spirit and trans* people, along with many others.

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These examples underscore how decolonizing approaches and intersectional approaches are both necessary and should be held as inseparable. Transforming research is a long process through which we need to continually ask difficult questions about whether we are producing new exclusions or reaffirming old ones, as well as whether we are reproducing or disrupting local and global colonial relations, institutions, and practices.

SUMMARY AND CONCLUSIONS In summary, a decolonizing approach to women’s health research deepens the attention to complexity offered by intersectional approaches, draws continual attention to social structures and processes, particularly those of appropriation and conquest, attends to how those structures and processes are integral to and intertwined with racializing and varied othering processes, fosters reconceptualizing ideas central to social justice, and foregrounds action. We argue that all research concerned with human well-being should be scrutinized with a decolonizing intent, hence all those engaged in research should “do” decolonizing research. Such research invariably should be done in partnership with those most affected. In the case of explicit attention to or involvement of Indigenous people, Indigenous people must be in a leadership role. This requires new structures and processes – Indigenous people cannot provide leadership without appropriate recompense, and contemporary mechanisms are not yet designed for this. When Indigenous people are not meaningfully involved, then that lack of involvement should be scrutinized. We offer the following considerations when conducting any research with an equity or social justice intent: • Meaningfully engage with all relevant communities, including the Indigenous people on whose land research is being conducted, even when they are not directly involved otherwise, and analyse racializing, colonial processes. • Examine our own practices for exclusive, marginalizing, and settler-colonial processes, ­including appropriation. • Foster repatriation and reconciliation as defined by Indigenous communities, or the ­communities involved. • Continue to ask critical questions about the practices we are engaging in and the “solutions” we are offering, such as: ○ What divisions and segmentations serve colonial purposes? ○ What alignments would mitigate settler-colonial hegemony? Connell (2015) called for feminist theory to be reshaped based on an “understanding of the coloniality of gender, seeing the gender dynamic in imperialism and the significance of global processes for the meaning of gender itself ” (p. 49). Decolonizing approaches offer direction to this effort. Intersectionality and decolonizing approaches complement each other, and when held in tension together can enhance critical analyses at all levels: intersectionality locates and positions subjects in complex ways; decolonizing approaches draw attention to systemic processes of

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conquest and domination, structural determinants of inequity, and structural violence. Through engaging intersectionality and decolonizing approaches, we can reimagine possible equitable decolonial futures and take actions to make them material.

DISCUSSION QUESTIONS 1 How can the risks of seeing colonialism as a thing of the past be mitigated in ­intersectional research? 2 In this chapter, it is argued that research is often a tool of or at least complicit with colonial processes – research can function to entrench the status quo and justify the ongoing exploitation of certain groups and resources. What are blatant and not-so-obvious examples of this, and how might an intersectional analysis lessen these tendencies? 3 Smith has challenged who should be involved in decolonizing research. What ought to be the role in research of people who experience white and colonial privilege? 4 Using the substantive issue addressed in any one of the chapters in Part Four of this book as an exemplar, how would the suggestions at the end of this chapter apply and be operationalized within that substantive area?

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Decolonizing Research peoples, with a focus on children and youth. https://www.ohchr.org/Documents/Issues/IPeoples/EMRIP /Health/ActionCanadaSexualHealth%20Rights_NativeYouthSexualHealthNetwork.pdf Native Youth Sexual Health Network, & First Nations Child and Family Caring Society of Canada. (2012). Submission for Canada’s 2nd United Nations universal period review. http://www.nativeyouthsexualhealth .com/canadassecondupr2012.pdf Native Youth Sexual Health Network, & International Indian Treaty Council Joint Statement. (2013). Agenda item 7(b) Dialogue with the Special Rapporteur on the rights of Indigenous people. http://www .nativeyouthsexualhealth.com/nyshn7specialerapporteur.pdf Nelson, J. (2003). Women of color and the reproductive rights movement. New York University Press. Norris, M. J. (2008). Aboriginal languages in Canada: Emerging trends and perspectives on second language acquisition (Catalogue 11-008). http://www.learnalberta.ca/content/aswt/culture_and_language /documents/aboriginal_languages_in_Canada.pdf Oaks, L. (2015). Giving up baby: Safe haven laws, motherhood and reproductive justice. New York University Press. Palermo, T., Bleck, J., & Peterman, A. (2014). Tip of the iceberg: Reporting and gender-based violence in developing countries. American Journal of Epidemiology, 179(5), 602–612. https://doi.org/10.1093/aje /kwt295 Pedersen, J. S., Malcoe, L. H., & Pulkingham, J. (2013). Explaining Aboriginal/non-Aboriginal inequalities in postseparation violence against Canadian women: Application of a structural violence approach. Violence Against Women, 19(8), 1034–1058. https://doi.org/10.1177/1077801213499245 Reading, C. (2015). Structural determinants of Aboriginal peoples’ health. In M. Greenwood, S. de Leeuw, N. M. Lindsay, & C. Reading (Eds.), Determinants of Indigenous peoples’ health in Canada: Beyond the social (pp. 3–15). Canadian Scholars Press. Romito, P., & Grassi, M. (2007). Does violence affect one gender more than the other? The mental health impact of violence among male and female university students. Social Science & Medicine, 65(6), 1222–1234. https://doi.org/10.1016/j.socscimed.2007.05.017 Ross, L. (2006a). The colour of choice: White supremacy and reproductive justice. In INCITE! Women of Color Against Violence (Ed.), Color of violence: The INCITE! Anthology (pp. 53–66). South End Press. Ross, L. (2006b). Understanding reproductive justice: Transforming the pro-choice movement. Off Our Backs, 36(4), 14–19. https://www.law.berkeley.edu/php-programs/centers/crrj/zotero/loadfile.php?entity _key=6NK5BUG9 Royal Canadian Mounted Police. (2015). Missing and murdered Aboriginal women: 2015 update to the national operational overview. http://www.rcmp-grc.gc.ca/en/missing-and-murdered-aboriginal-women-2015 -update-national-operational-overview Saurette, P., & Gordon, K. (2013). Arguing abortion: The new anti-abortion discourse in Canada. Canadian Journal of Political Science, 46(1), 157–185. https://doi.org/10.1017/S0008423913000176 Stettner, S. (2016). Without apology: Writings on abortion in Canada. Athabasca University. Schnarch, B. (2004). Ownership, control, access, and possession (OCAP) or self-determination applied to research: A critical analysis of contemporary First Nations research and some options for First Nations communities. International Journal of Indigenous Health, 1(1), 80–95. https://doi.org/10.1037 /e509012013-037 Sentha, C., & Doull, M. (2013). Spatial disparities and travel to freestanding abortion clinics in Canada. Women’s Studies International Forum, 38(2013), 52–62. https://doi.org/10.1016/j.wsif.2013.02.001 Sentha, C., Palmer, B., Ackerman, K., & Jonavicek, N. (2013). Choice, interrupted: Travel and inequality of access to abortion services since the 1960s. Labour, 71(Spring 2013), 29–48. http://www.lltjournal.ca /index.php/llt/article/view/5689 Shaw, J. (2013). Full-spectrum reproductive justice: The affinity of abortion rights and birth activism. Studies in Social Justice, 7(1), 143–159. https://doi.org/10.26522/ssj.v7i1.1059 Silliman, J., Fried, M. G., Ross, L., & Gutiérrez, E. R. (2004). Undivided rights: Women of color organize for reproductive justice. South End Press.

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Colleen Varcoe and Holly A. Mckenzie Simpson, A. (2007). On ethnographic refusal: Indigeneity, “voice” and colonial citizenship. Junctures, 9, 67–80. https://junctures.org/index.php/junctures/article/view/66 Simpson, A. (2014). Mohawk interruptis: Political life across the borders of settler states. Duke University Press. Simpson, L. (2004). Anticolonial strategies for the recovery and maintenance of Indigenous knowledge. The American Indian Quarterly, 28(3 & 4), 373–384. https://doi.org/10.1353/aiq.2004.0107 Sinha, V., Trocmé, N., Blackstock, C., MacLaurin, B., & Fallon, B. (2011). Understanding the overrepresentation of First Nations children in Canada’s child welfare system. In K. Kufeldt & B. McKenzie (Eds.), Child welfare: Connecting research, policy, and practice (pp. 307–322). Wilfred Laurier Press. Sinha, V., Trocmé, N., Fallon, B., & MacLaurin, B. (2013). Understanding the investigation-stage overrepresentation of First Nations children in the child welfare system: An analysis of the First Nations component of the Canadian Incidence Study of Reported Child Abuse and Neglect 2008. Child Abuse & Neglect, 37(10), 821–831. https://doi.org/10.1016/j.chiabu.2012.11.010 Smith, A. (2002). Better dead than pregnant: The colonization of Native Women’s reproductive health. In J. Silliman & A. Bhattacharjee (Eds.), Policing the national body sex, race, and criminalization (pp. 123–146). South End Press. Smith, A. (2009). Beyond pro-choice versus pro-life: Women of color and reproductive justice. In S. V. Rosser (Ed.), Diversity and women’s health (pp. 42–63). Johns Hopkins University Press. Smith, L. T. (1999). Decolonizing methodologies: Research and Indigenous people. University of Otago Press. Smith, L. T. (2012). Decolonizing methodologies: Research and indigenous peoples (2nd ed.). Zed Books. Smith, D., Varcoe, C., & Edwards, N. (2005). Turning around the intergenerational impact of residential schools on Aboriginal people: Implications for health policy and practice. Canadian Journal of Nursing Research, 37(4), 38–60. https://cjnr.archive.mcgill.ca/article/view/1970 Stern, A. M. (2005). Eugenic nation: Faults and frontiers of better breeding in modern America. University of California Press. Stoler, A. L. (1995). Race and the education of desire: Foucault’s history of sexuality and the colonial order of things. Duke University Press. Stote, K. (2012). The coercive sterilization of Aboriginal women in Canada. American Indian Culture and Research Journal, 36(3), 117–150. https://doi.org/10.17953/aicr.36.3.7280728r6479j650 Stote, K. (2015). An act of genocide: Colonialism and the sterilization of Aboriginal women. Fernwood Publishing. Tait, C. (2008). Simmering outrage during an “epidemic” of fetal alcohol syndrome. Canadian Woman Studies, 26(3/4), 69–76. https://cws.journals.yorku.ca/index.php/cws/article/view/22115 Tait, C. (2009). Disruptions in nature, disruptions in society: Aboriginal peoples of Canada and the “making” of fetal alcohol syndrome. In L. J. Kirmayer & G. G. Valaskakis (Eds.), Healing traditions: The mental health of Aboriginal peoples in Canada (pp. 196–218). UBC Press. Thomas, D. A., & Kamari Clarke, M. (2013). Globalization and race: Structures of inequality, new sovereignties, and citizenship in a neoliberal era. Annual Review of Anthropology, 42, 305–325. https:// doi.org/10.1146/annurev-anthro-092412-155515 Truth and Reconciliation Commission of Canada. (2015). Honouring the truth, reconciling for the future: Summary of the final report of the Truth and Reconciliation Commission of Canada. http://www.trc.ca/assets /pdf/Honouring_the_Truth_Reconciling_for_the_Future_July_23_2015.pdf Tuck, E., & Yang, K. W. (2012). Decolonization is not a metaphor. Decolonization: Indigeneity, Education & Society, 1(1), 1–40. https://jps.library.utoronto.ca/index.php/des/article/view/18630 University of Victoria Faculty of Human and Social Development. (2003). Protocols & principles for conducting research in an Indigenous context. https://www.uvic.ca/hsd/research/igovprotocol.pdf VanderEnde, K. E., Yount, K. M., Dynes, M. M., & Sibley, L. M. (2012). Community-level correlates of intimate partner violence against women globally: A systematic review. Social Science & Medicine, 75(7), 1143–1155. https://doi.org/10.1016/j.socscimed.2012.05.027

Decolonizing Research Varcoe, C., Brown, H., Calam, B., Buchanan, M., & Newman, V. (2011). Capacity building is a two-way street: Learning from doing research in Aboriginal communities. In G. Creese & W. Frisby (Eds.), Feminist community research: Case studies and methodologies (pp. 210–231). UBC Press. Varcoe, C., Brown, H., Calam, B., Harvey, T., & Tallio, M. (2013). Help bring back the celebration of life: A Community-based participatory study of rural Aboriginal women’s maternity experiences and outcomes. BMC Pregnancy and Childbirth, 13(26). https://doi.org/10.1186/1471-2393-13-26 Varcoe, C., & Dick, S. (2008). Intersecting risks of violence and HIV for rural and Aboriginal women in a neocolonial Canadian context. Journal of Aboriginal Health, 4, 42–52. https://doi.org/10.18357 /ijih41200812314 Venis, S., & Horton, R. (2002). Violence against women: A global burden. The Lancet, 359(9313), 1172. https:// doi.org/10.1016/S0140-6736(02)08251-X Walkem, A. (2015). Wrapping our ways around them: Aboriginal communities and the Child, Family and Community Service Act (CFCSA) guidebook. https://cwrp.ca/publications/wrapping-our-ways-around-them -aboriginal-communities-and-child-family-and-community Walter, M., & Anderson, C. (2013). Indigenous statistics: A quantitative research methodology. Left Coast Press. Walters, K. L., Stately, A., Evans-Campbell, T., Simoni, J. M., Duran, B., Schultz, K., & Guerrero, D. (2009). “Indigenist” collaborative research efforts in Native American communities. In A. R. Stiffman (Ed.), The field research survival guide (pp. 146–173). Oxford University Press. Wilson, S. (2008). Research is ceremony: Indigenous research methods. Fernwood. Women’s Earth Alliance & Native Youth Sexual Health Network. (2016). Violence on the land, violence on our bodies: Building an environmental response to environmental violence. http://landbodydefense.org Yee, J. (2011). Making the connections at the Native Youth Sexual Health Network: Sexual violence and sex education. Ending Violence Association of BC, 1(Spring), 19–24. https://endingviolence.org/files/uploads /BC_NL_SpecialEdition_April2011_Online_vFINAL.pdf Žižek, S. (2008). Violence. Picado.

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From Gender Mainstreaming towards Mainstreaming Intersectionality Olena Hankivsky and Gemma Hunting

INTRODUCTION For over 20 years gender mainstreaming (GM)1 has been an accepted international strategy to advance gender equality. GM is intended to ensure that all policy areas and sectors integrate (“mainstream”) gender in a meaningful and transformative way.2 At the same time, critiques of GM have reached a critical mass (Bacchi & Eveline, 2009; Crespi, 2009; Hankivsky, 2013; Henry et al., 2017; Kantola, 2010; Tolhurst et al., 2012; Walby, 2011; Zalewski, 2010), largely because it has been judged as failing to produce transformative change across organizations, governments, and policy sectors. In response, most examinations of GM have focused on generating solutions geared towards ­improving implementation. And yet, as Parpart (2014) has correctly observed, “Solutions have brought little new to the table ... they call for more of the same in terms of improving implementation: more resources, stronger institutions, more accountability and greater commitment” (p. 382). Arguably, it is easier to focus on implementation mechanisms of GM than to interrogate what might be lacking in terms of the substance and content of GM approaches, or as Eveline and Bacchi (2005) so eloquently questioned more than 10 years ago: What are we mainstreaming when we mainstream gender? (p. 496). This question takes on new meaning at a time when ­increasingly heterogeneous societies and diverse populations are prompting a growing number of ­international organizations and nation states to re-evaluate GM initiatives, which have primarily focused on ­gender as a key explanatory factor of inequity, including health inequities, and have often ­constructed gender as binary or fixed (e.g., “male,” “female”) and unrelated to diversity. More and more, conventional approaches to GM are seen as inadequate and out of step with developments both in feminist theory and in empirical research. Recently, for example, Lamprell and Braithwaite (2017) argued that “GM will have little effect as an emancipatory project if ... it fails to take account of the cross-cutting variables it needs to effect” (p. 2). In light of growing acknowledgment that gender relates to and interacts with other structural and social factors that shape inequity, in Canada and elsewhere, calls are being made with increased frequency for more evolved

From Gender Mainstreaming towards Mainstreaming Intersectionality

mainstreaming approaches, informed by intersectionality. Intersectionality is well established across disciplines and takes a multilevel approach to capture intersecting dimensions of inequity and privilege to understand the diversity of human lives and experiences (e.g., Bustelo, 2009; Hankivsky, 2012; Lamprell & Braithwaite, 2017; Tolhurst et al., 2012). As Tolhurst et al. (2012) argued: We have reached a critical point where the failures of GM demand a new strategic approach. This

revised approach needs to address the disconnect with contemporary feminist theory by opening up categories beyond the static male/female binary, acknowledging the diversity of gender and its intersection with other societal axes of power. (p. 1831)

The dominant overall approach to date has been to integrate intersectionality into existing a­ pproaches to gender inequality and gender analysis (e.g., Carson et al., 2013; Development S ­ tudies Network, 2015; Morgan et al., 2016; Theobald et al., 2017; Witter et al., 2017; United ­Nations [UN], 2017). This is captured, for example, by the question posed by Bianco (2017): How do we examine gender inequities through an intersectional framework that encompasses the lived realities of all women? (p. 10). However, strategies of integration have not been critically reflected upon within GM literature (Hunting & Hankivsky, 2020; Lombardo et al., 2017), and arguably much work is required to fully appreciated the transformational consequences of intersectionality for gender and other inequities in all aspects of mainstreaming (Bustelo, 2017; Gilles, 2015). In this chapter we build on observations made by Hankivsky (2007) in the first edition of ­Women’s Health in Canada in the chapter entitled “Gender-Based Analysis and Health Policy: The Need to ­Rethink Outdated Strategies” and provide a brief overview of intersectionality. The focus of the chapter is on examining current strategies of integrating intersectionality within GM efforts. We argue that, with few exceptions, strategies to date, exemplified by approaches within international organizations and within the Canadian Institutes of Health Research (CIHR) – specifically the CIHR-­ Institute for Gender and Health (IGH) (e.g., intersectional gender analysis, sex- and gender-based analysis plus) – represent a disturbing trend because they operationalize an improper understanding of intersectionality. This occurs because, primarily, they engage in what we argue is a “gender-first”3 approach, where gender is consistently the factor – and often viewed as inherently static – with which the analysis begins, reflecting a sense of its importance over all other considerations. And yet, according to an intersectionality perspective, there is no such thing as a ­pre-determined, most significant factor in determining inequity. In so doing, these kinds of approaches are resulting in the misinterpretation and co-optation of intersectionality, arguably reducing it to a buzzword and ultimately removing it from its original intent and transformational potential. In response, we argue that GM cannot be improved, overlaid, bent, or stretched (Lombardo et al., 2009) to integrate or accommodate intersectionality. At the same time, we do point to promising openings in this chapter, including developments within the United Nations and specifically in relation to the UN Sustainable Development Goals (e.g., recognition of intersecting factors and discrimination in advancing equity), that can be harnessed in a way that would lead to the most effective applications of intersectionality. We thus propose what can be framed as an intersectionality-first, rather than a gender-first approach. It is our position that to properly engage with an intersectionality perspective requires an alternative question (as opposed to the one above), namely:

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How can we examine inequities through an intersectional lens to deepen our understanding of the lived realities of differently situated persons, which includes, but is not limited to, an analysis of gender? To demonstrate the difference this reframing has in the area of health, we close the chapter by drawing on a framework for intersectionality-based analysis, using an example of migrant health.

BACKGROUND In the above noted chapter in the first volume of Women’s Health in Canada, Hankivsky (2007) argued that a typical gender-based analysis (GBA) approach would not necessarily provide the contextual understanding of all the social, economic, and cultural variables shaping health, many of which can be more important than gender. She argued that “what is needed is an altogether new conceptual framework that combines intersecting axes of discrimination but does not privilege gender over all other determinants of health” (p. 159). Indeed, proper GM – whether in health or in other areas of application – requires a theoretical base, along with conceptual and methodological tools that are able to capture and examine the interaction of distinct factors at individual, familial, communal, sectoral, and global levels that generate inequalities for women and men. Relatively few efforts, however, have been made to interrogate the theoretical bases of GM. Nevertheless, emerging investigations have generated important insights, including the lack of attention to boys and men (as opposed to girls and women), which is concerning, given evidence of differential impacts of the social determinants of health on men and boys (White et al., 2018). Parpart (2014) has observed in the development field that: The current focus on women and girl power in mainstream development agencies suggests that gender

equality can be achieved by women and girls alone ... This assumption allows a focus on men as devel-

opment “problems” associated with HIV/AIDS and gender based violence, unrelated to the goals of GM. (pp. 387–388)

Moreover, for Parpart (2014), a focus on men as development problems that can be fixed “sidesteps discussions about the structural consequences of the intersection between gendered practices and cross-cutting identities based on class, race, ethnicity, and sexuality” (p. 390). In addition, as Hankivsky et al. (2018) observed, the inadequate treatment of diversity and differences, including across gender (and sex) within GM frameworks and tools is being increasingly acknowledged. There is more pressure to identify mainstreaming strategies and methods that challenge the status quo and more accurately respond to the myriad interacting social locations and structures that shape inequalities, including but not limited to gender (Bacchi & Eveline, 2009; Hankivsky, 2005, 2007, 2008, 2013; Krizsan et al, 2012; Lombardo et al., 2009; Mulinari et al., 2012; Paterson, 2010; Siim & Stoltz, 2013; Urbanek, 2009; Woodward, 2008). Specifically, as Henry et al. (2017) so aptly explained, there is now an interest in how gender analysis can be ­employed to differentiate between “women and men, young and old, rich and poor, urban and rural” (p. 849). Central to this interest is the application of intersectionality to GM.

From Gender Mainstreaming towards Mainstreaming Intersectionality

INTERSECTIONALITY Intersectionality is widely viewed as a robust method for understanding the significance and e­ ffects of intersections – the intersections of social locations, institutions, and structures that reveal how power creates and perpetuates differences that result in oppression and privilege (Cho et al., 2013; Collins, 2015; Dhamoon, 2011; Hankivsky, 2014). Intersectionality is viewed as an invaluable ­resource for precisely identifying and capturing inequities and for informing intervention strategies that are relevant across specific populations because they better reflect inequities as they are lived by individuals and groups (Hancock, 2011; Verloo, 2013). In sum, intersectionality posits that inequities are not the outcome of single, distinct factors, but rather the outcome of intersections – intersections of differing social locations, power relations, and experiences. Though taken up in varying ways, the key tenets of intersectionality include the following: • Human lives cannot be explained by taking into account single categories, such as gender, race, or socioeconomic status. People’s lives are multi-dimensional and complex. Lived realities are shaped by multiple and varied factors and social dynamics operating together. • When analysing social problems, the importance of any category, structure, or stratifier cannot be predetermined; the categories and their importance must be discovered in the process of investigation. • Relationships and power dynamics between social locations and processes (e.g., racism, ­classism, heterosexism, ableism, ageism, sexism) are linked. They can also change over time and vary depending on geographic settings. • People experience privilege and oppression (and resist and reinforce forces of inequity) simultaneously. This depends on what situation or specific context they are in. • Multi-level analyses that link individual experiences to broader structures and systems are ­crucial for revealing how power relations are shaped and experienced. • Researchers, policymakers, and activists must consider their own social positions, roles, assumptions, and power when taking an intersectional approach. This reflexivity should be in place before setting priorities and directions in research, policy work, and activism. • Intersectionality is explicitly oriented towards transformation, building coalitions among ­different groups, and working towards social justice (Hankivsky, 2014, p. 3). Importantly, intersectionality resists assuming that any single factor or process (e.g., gender or gender inequity) has a priori significance in any given issue or situation. As Gkiouleka et al. (2018) emphasized: “There are no sociological categories (e.g. race, gender) that have an a priori greater significance in shaping individual experience. Rather, social positioning is shaped through an interplay that involves multiple categories within specific socio-historical contexts” (p. 93). An intersectional approach does not mean that gender is lost or not sufficiently interrogated in analysis, as it is still a critical intersection shaping experience. Gender is instead captured in ways that reflect how it is “mediated by additional factors” (Gkiouleka et al., 2018, p. 94).

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INTERNATIONAL AND NATIONAL TRENDS Global Responses to the Intersectional Challenge Global trends in which intersectionality has been seen as complementary to or strengthening GM are reflected in a range of similar terms, including “intersectional gender mainstreaming” (Women’s Legal Education and Action Fund, 2016), “intersectional gender lens” (Clayman Institute, 2017; Re: Gender, 2016), “intersectional gender analysis” (Center for International Forestry ­Research, 2015; City for All Women Initiative [CAWI], 2019; Our Watch, 2015; U.S. Agency for International Development, 2015; World Health Organization [WHO], 2020), a “gender+ perspective” (Bustelo, 2017; European Evaluation Society & Latin American and Caribbean Evaluation Network, 2015; Lombardo et al., 2017), and “­gender mainstreaming with an intersectional perspective” (Swedish Secretariat for Gender Research [SSGR], 2014). Intersectionality is also considered a key component of expertise and ­capacity training required for improved gender analysis and GM (e.g., United Nations International ­Children’s Emergency Fund, 2017; United Nations Women [UN Women], 2017). What follows are illustrative national and international examples – across research, policy, and practice – of how intersectionality has been taken up in relation to gender equality initiatives and GM. These examples are not intended to be representative of all work in this area, nor comprehensive examinations of a particular organization’s or institute’s work. However, they are consistent in the prioritization they give to gender, and this may be largely understood as motivated by political expediency – in terms of working within existing paradigms or a genuine concern that gender may be lost and/or marginalized within an intersectionality framework.

1) “an intersectional gender lens” The Clayman Institute for Gender Research at Stanford University works to create knowledge and implement change to promote gender equality nationally and internationally. It offers many programs that seek ways to address barriers to women’s advancement and to advance gender equality, including preventing sexual assault and promoting the participation of women in technology. The institute promotes a broad research agenda and interdisciplinary network, offers research fellowships and events, and seeks to empower women’s voices and educate students (Clayman Institute, 2019). A recent article by the Institute argues for an examination of societal issues through an “­intersectional gender lens,” asking questions central to gender equality and women’s advancement such as “How do we examine gender inequities through an intersectional framework that encompasses the lived realities of all women?” (Clayman Institute, 2017, par. 3). The gender lens it uses is ­described as: inherently intersectional because it shines a light on the voices and perspectives that have been historically overlooked and marginalized in discussions of gender. This particular lens fosters both more

comprehensive research on gender discrimination and more inclusive pathways for evidence-based solutions. Expanding our gender lens enables us to see the world more fully and to better account for diversity in race, ethnicity, sexuality, ability, and economic status of women. (Bianco, 2017, p. 10)

From Gender Mainstreaming towards Mainstreaming Intersectionality

Employing an “expanded” gender lens is thus considered here to be inclusive and encompassing of intersectionality, in that by applying a broad gender lens, an intersectional analysis inherently occurs.

2) “it is not just gender” The Gender and Development Network (GADN) consists of leading United Kingdom–based non-governmental organization staff, practitioners, academics, and consultants working on gender, development, and women’s rights issues. GADN is a platform for members to share information, lobby government and international bodies on gender and development issues, and provide expert input on policies and projects, including GM. Its members work in collaboration with development and advocacy organizations internationally (GADN, 2018). Intersectionality is seen as a central concept to the work of GADN (2017) and is said to assist its assessment of: how particular constellations of identities and social positions impact on access to rights and opportuni-

ties, and how policies, programmes, services and laws affect people in different, context-specific or even unexpected ways. Understanding different intersecting systems of oppression enables us to recognize the different experiences of women, and how gender inequality is shaped by these intersections. (p. 3)

Although the primary focus of the network is said to be “patriarchy, gender inequality and the abuse of women’s rights” (GADN, 2017, p. 1), it is argued that intersectionality allows for gender inequality to not be understood or confronted in isolation from other forms of discrimination and oppression women experience (GADN, 2017). Ways in which intersectionality can inform its work include being reflexive, prioritizing diverse knowledges, and building intersectional alliances. It also highlight that a key challenge in integrating intersectionality is the risk of losing a focus on women’s rights, gender equality, and a recognition of patriarchy (GADN, 2017).

3) intersecting factors, intersecting discrimination At the UN level, there is greater attention to intersectional discrimination and intersecting factors shaping inequity in relation to GM and gender analysis (United Nations Development Programme [UNDP], 2013a, 2013b, 2014a; United Nations Division for Social Policy and Development Disability [UNDSPD], 2016; UN Women, 2015). For instance, a recent UNDP (2014a) evaluation of measuring change related to GM and gender equality underscores that GM implementation requires exploring if and how gender is approached in siloed ways, including asking questions such as these: Does gender analysis and integration of gender primarily rest in the hands of staff with specific gender

roles, such as gender focal points or gender teams? Are intersectional analyses looking at how gender and with other factors affect development results in programmes and projects? (p. 20)

Another UNDP (2014b) report acknowledges intersectional discrimination as a key concern shaping women’s leadership in local government and describes an intersectional approach as capturing multiple vulnerabilities of women “on account of multiple identities due to their class,

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caste, ethnicity, religion or belief, political identity, nationality, health, status and age” (p. 54). This ­intersectionality “makes women suffer from overlapping forms of discrimination, multiplying their burden and resulting in a substantial underrepresentation and exclusion of women in the political decision-making process” (p. 54). And this way of thinking has also been accepted by the WHO. For example, a 2010 report on poverty, social exclusion, and health systems in the WHO European Region argued: Inequalities intersect and are mutually reinforcing. Inequalities in one domain are interlinked with, are influenced by and exert an influence on other social and economic inequalities ... Addressing health inequities therefore requires addressing inequalities across a range of economic and social domains and at the intersections of these inequalities (p. 4).

A recent WHO editorial on gender, health, and the Sustainable Development Goals also ­emphasized that: Gender must be understood within a complex and specific local context. By capturing the different

experiences of men and women, gender can be understood as dynamic and layered with a range of multiple, intersecting social determinants that impact on health. (Magar, 2015, p. 743)

Indeed, the cornerstone of the Sustainable Development Goals (SDGs) is a commitment to “leave no one behind” – an explicit position that the SDG Agenda Goals and targets must be met for “all nations and people and for all segments of society,” requiring reaching out first to “those who are furthest behind” (UN, 2016, p. 11). Health has taken centre stage in the agenda, via the specific goal of SDG 3 – to “ensure healthy lives and promote well-being for all at all ages” (UN, 2016, p. 4) – and in its recognition as essential for all aspects of sustainable development, as well as a precondition indicator and outcome of successful sustainable development (Buse & Hawkes, 2015; Chisholm & Howden-Chapman, 2017; Hill et al., 2014; Nunes et al., 2016; WHO, 2012). The SDG Agenda supports the pledge to leave no one behind in key ways. First, it commits ­governments to consider a broad range of health and social inequities. For example, SDG 10(2) sets out the following target: “By 2030, empower and promote the social, economic, and political inclusion of all, irrespective of age, sex, disability, race, ethnicity, origin, religion or economic or other ­status” (UN, 2019, Goal 10 Targets section). At the same time, Goal 5 of the SDGs on gender equality focuses exclusively on the empowerment of women and girls. Little attention has been paid to how to reconcile the broader equity aims of the SDGs with the prioritization of ­gender equality. Stuart and Woodroffe (2016) have suggested for example, that SDG 10(2) implies a ­requirement not just to mainstream a gender analysis (or any other single factor or priority) across all goals but to find strategies able to capture groups marginalized by income, race, age discrimination, disability, and other areas. Indeed, those most likely left behind are those facing “intersecting inequalities” resulting from membership in two or more marginalized groups (­Mangubhai & Capraro, 2015; Paz Arauco et al., 2014; Stuart & Woodroffe, 2016). This is illustrated, for e­ xample, in SDG Target 3.8 of achieving universal health coverage. The impediment to such access is framed

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as more than just economic but “reinforced by such factors as gender, caste, race, ethnicity, disability, gender identity or sexual orientation to name some” (Development Alternatives with Women for a New Era, 2016, p. 41). Focusing on intersecting inequities within the SDGs offers a pivotal opportunity to bring group-based inequalities into relief at an international level (Lenhardt & Samman, 2015). At the same time, any group-based focus must also reflect how different forms of marginalization overlap, layering disadvantage upon disadvantage within such groups (Mills, 2015). Achieving the SDGs, including those focusing on health, requires attention to relationships between complex inequities, which can be advanced through intersectionality (Korea Center for Women in Science, ­Engineering and Technology, 2016; United Nations Social Development Network, 2017). While the opening is there for such consideration, this potential has not yet been fully explored or operationalized (see, for example, Kapilashrami & Hankivsky, 2018).

BRINGING INTERSECTIONALITY INTO GENDER MAINSTREAMING: CANADA CIHR and IGH Since 2010, the CIHR, which houses the only specific funding institute dedicated to gender, sex, and health research in the world – the IGH - has distinguished itself internationally by implementing a mandatory requirement that all applicants indicate whether and how they are taking sex and gender into account in their research. A recent evaluation of the mandatory policy for applicants shows an overall increase in the proportion of CIHR-funded researchers incorporating sex and gender in their research designs ( Johnson et al., 2014). In 2017, CIHR continued its work in the field by developing an equity strategy. Dr. Jane E. Aubin, chief scientific officer and vice-president, research, knowledge translation and ethics, at CIHR, explained the rationale behind such a development in the following statement: Beyond the obvious reality that all researchers should have equitable access to funding for their r­ esearch, equity also allows for diversity in the system. There have been countless studies that show that ­diversity – not just of scientific expertise, but of the people conducting and participating in the ­research – leads to more creativity, more innovation, and more meaningful outcomes. (CIHR, 2017, p. 1)

According to CIHR, the equity strategy aligns with the Government of Canada’s broader g­ ender-based analysis plus (GBA+) initiatives. The official federal strategy of GBA+ was first introduced in 2012. The “plus” in GBA+ acknowledges that GBA goes beyond biological (sex) and sociocultural (gender) differences (Status of Women Canada [SWC], 2017). GBA+ is designed to consider many factors – in addition to gender – like race, ethnicity, religion, age, and mental or physical disability. It has been described as the federal government’s response to the growing diversity of Canada’s population and the need for an evolution in GBA that could address gender, along with other identity factors for diverse groups of women and men, girls and boys (Standing

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Committee on the Status of Women, 2016). Indeed, as SWC (2017) described it, once a policy issue has undergone the GBA+ process, gender may emerge as the most important factor, while in other cases it might be any or a combination of factors that influence a person’s experience of a government policy, program, or initiative. Significantly, the plus in GBA+ is an explicit attempt to integrate intersectionality into gender-based analysis (SWC, 2017). Specifically, CIHR identified three main areas in which alignment with GBA+ is being pursued: • SGBA (sex- and gender-based analysis in research), which focuses on the research that CIHR funds, aims to ensure that sex and gender considerations are taken into account in the design, conduct, and reporting of all funded research projects. • Equity in CIHR’s funding system, which focuses on individuals who apply for CIHR funding and those who are awarded CIHR funding, aims to ensure equitable access to CIHR funds across all eligible individuals. • Equity in how CIHR conducts its business internally (e.g., hiring practices). The scope of CIHR’s equity strategy is described as ensuring equitable access to CIHR funds based on the following variables: gender, career stage, official languages, Indigenous status, and size and location of the institution. At the same time, the CIHR equity strategy stated that “while we will conduct in-depth investigations on all variables ... in the immediate term, we are focusing on gender equity” (CIHR 2019). For example, the goal of CIHR’s gender equity framework is to address gender equities in competition success rates, gender inequities in the amount of grant funding, and gender inequities in the broader research enterprise including hiring, promotion, and nomination processes. Importantly, the CIHR recognizes the role of unconscious biases that can influence success rates and has made the completion of an unconscious bias module for all peer reviewers mandatory. More intervention examples include targeted solutions for program-specific problems, assessment of peer review recruitment processes, procedure and literature, and raising awareness of gender biases that exist in the health research ecosystem, including in the internal operations of CIHR and institutions with which the CIHR interacts. In terms of IGH, according to its newest strategic plan – Science Is Better with Sex and Gender: Strategic Plan 2018–2023 (CIHR, 2018) – the institute is taking a sex- and gender–based analysis plus approach (SGBA+), which recognizes intersecting factors in addition to sex and gender and aligns with the broader government of Canada strategy, GBA+, discussed above. And there are questions on intersectionality in the IGH training modules and references in many of its publications. However, CIHR as a whole through its equity strategy continues to focus on gender, and the IGH with SGBA+ follows the model of the federal government, which despite its intention to integrate intersectionality into GBA+, continues to prioritize sex/gender in such a way that other factors are seen as having additional, additive effects that are not consistent with an intersectionality approach (for more detailed discussion of the limitations of such an approach, see Hankivsky, chapter 1, this volume). Beyond Canada, the Swedish SSGR (2014) report Gender Mainstreaming with an Intersectional ­Perspective explicitly stated what is often overlooked in other gender approaches that incorporate

From Gender Mainstreaming towards Mainstreaming Intersectionality

intersectionality, including the need to recognize people who may not identify as a woman or man (e.g., gender diversity) and not to assume that “all women are subordinate to all men” (and thus bring more attention to possible shared experiences across women and men), as well as the ways in which experience is shaped by power structures that confer privilege and disadvantage (p. 6). Also, in the Swedish context is the Includegender.org initiative, a national resource with tools and examples for GM and gender equality.4 The site articulates intersectionality as a central theory to gender equality, outlining that women and men must not be considered homogenous groups, that gender relations alone cannot explain inequalities or how power is exercised, that we need to focus on how social categories affect each other rather than treat categories as separate or additive, and that relevant categories of analysis might change depending on the particular analysis (Include Gender, 2014).

KEY PROBLEMS AND MOVING FORWARD All the examples above demonstrate the broadening perspectives required to fully address the dynamics of inequality and inequity. They reflect a growing consensus that focusing on a single factor or dimension of inequity (i.e., gender) is insufficient in addressing the range of inequalities experienced by diverse groups of men and women. Promisingly, this shows a move towards better ­recognition of the multiplicity of gendered experiences and how gender intersects with diverse factors and ­processes to shape inequalities. However, the examples also remain limited in capturing the key ­tenets and ­intentions behind intersectionality approaches, which can constrict comprehensive understandings of how inequity operates. Specifically, they demonstrate key limitations that interrelate: • Sex and gender (and most often, women) and gender inequity are the a priori focus (versus men, gender-diverse people, or other axes of inequity). • Discrimination and vulnerability tend to be the focus, with assumedly static and cumulative identity/individual-level factors shaping these experiences (e.g., race, ethnicity, SES). • An overall assumption exists that adding intersectionality equates to better gender analysis. Overall, as these examples illustrate, intersectionality is being increasingly positioned as complementary and necessary to GM as it can better inform how gender is conceptualized and addressed. For instance, Lamprell and Braithwaite (2017) argued that a singular approach to gender inequality is insufficient, and a “synthesis of the two approaches” that combines the strengths of each is an important direction for policies and strategies to reflect local realities (p. 9). Similarly, Tolhurst et al., (2012) argued that GM needs “re-framing to enable effective strategies to address gender as an intersecting component of wider structural inequalities” and “inform the development of an intersectional approach to pursuing gender equity” (p. 1831). Despite these movements to add or integrate intersectionality in GM work, the fact remains that for most organizations GM work is based on a conviction that gender is the logical entry point for acknowledging and openly discussing multiple forms of inequity. Yet, as mentioned, intersectionality does not assume gender or gender inequity as most significant to individual experience but instead recognizes that experiences of inequity are shaped by gendered

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forces and factors that intersect and are co-constituted by other diverse factors. These ­dynamics change across time and place; thus, gender inequity may not be most salient in a given context for an individual or group. Therefore, starting with gender or women a priori in m ­ ainstreaming or analysis may overlook more salient factors influencing inequity in a given situation or context. As the examples below illustrate, when inequities are understood as not being restricted to gender but as inseparable from other factors such as class, race/ethnicity, sexuality, immigration status, geography, and ability – without any presumption of ranking – this has profound implications for understandings of human lives, experience and concomitant inequities.

INTERSECTIONALITY-FIRST APPROACHES Many organizations internationally and nationally, as demonstrated by the examples below, are overcoming the aforementioned limitations and are employing intersectionality in ways that strengthen and broaden mainstreaming efforts.

Example 1:  Age, Gender, and Diversity Policy One promising development can be found in the United Nations High Commissioner for ­Refugees’ (UNHCR, 2011) Age, Gender, and Diversity Policy, introduced in 2011. This policy pays explicit ­attention to age, gender, sexual orientation and gender identity, disability, and belonging to a n ­ ational or ethnic, religious, and linguistic minority or Indigenous group, and looks at the relationship ­between these, consistent with an intersectional approach. The UNHCR Operations Portal database also features a resource looking at how to apply intersectionality to research, policy and program processes, entitled the Intersectionality-Based Policy Analysis Framework (Hankivsky et al., 2012).

Example 2:  Advocating Equity in Municipalities In Canada, CAWI – which works with municipalities, women’s organizations, academics, and local and national organizations in Canada to advance gender equality – produced a guide called Advancing Equity and Inclusion for municipalities (2015). This guide uses an intersectional a­ pproach “to peel back the many layers that make up people, places, and power relations” and in turn create “policies, practices, and procedures that are responsive to the needs of diverse communities and groups” (CAWI, 2015, p. 12). One justification provided for using this approach is to “move beyond single identities or group-specific concerns, which are ineffective in explaining the nuances and dynamics of human lives” (Hankivsky 2014, as quoted in CAWI, 2015, p. 15).

Example 3:  An Intersectionality Toolkit The Canadian Research Institute for the Advancement of Women (CRIAW) – an institute that provides tools for organizations to advance social justice and equality for women – underscored the

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need for an intersectionality-informed framework to advance equality for all women. For example, its Toolkit for Applying Intersectionality (CRIAW, 2009), explicitly underscores the risk of overlooking diverse groups of women in gender equality initiatives (e.g., racialized women, LGBT women, women with disabilities) and the need for a more “holistic approach” offered by intersectionality. Intersectionality is said to look at various factors together and not in isolation, allowing for the focus to be on experiences and identities rather than fixed categories: “We can’t just apply a strictly anti-racist or anti-homophobic or gender equality perspective ... we all have our own unique histories and experiences that determine our social location” (CRIAW, 2009, p. 8).

AN INTERSECTIONALITY-BASED POLICY ANALYSIS FRAMEWORK (IBPA) The IBPA Framework (Hankivsky et al., 2012) is recognized as a promising example of flexible and practical guidance on how to integrate intersectionality into equity-informed program and policy analysis and policy processes (Centre for Research & Education on Violence Against Women & Children [CREVAWC], 2015; Hankivsky, 2014, Hankivsky & Jordan-Zachery, 2019; Hankivsky et al., 2014; Hunting et al., 2015; Mendell et al., 2012; National Collaborating Centre for Healthy Public Policy [NCCHPP], 2015; Palència et al., 2014; Yousefi, 2017). The framework seeks to enable better understandings of who is benefiting and who is excluded from policy goals, priorities, and related resource allocation. The overall purpose of IBPA is to build upon and improve strategies for evaluating the differential effects of policy and program processes on populations, while providing an encompassing and effective method for understanding the varied equity-relevant implications of policy. The guidance provided by IBPA directly responds to a critique that there is an absence of resources on how to integrate intersectionality and its key tenets into policy-related processes. For instance, Lamprell and Braithwaite’s (2017) recent article on the conceptual limitations inherent in GM argued that “intersectionality offers a more complex, far-reaching framework for a conceptualization of gender and the societal factors that impacts upon it, yet struggles to successfully articulate strategies for effective policy making” (p. 9). Importantly, IBPA is explicitly grounded in a set of guiding principles that ­reflect intersectionality’s key tenets and inform the framework’s guiding questions.5 These principles and questions foreground and maintain conceptual clarity throughout policy processes and analyses to ensure work is intersectionality-informed. Doing this can help address what GM critics have argued to be a “watering down” or “conceptual narrowness” of gender within GM (Fischer, 2012; Lamprell & Braithwaite, 2017; Tolhurst et al., 2012). The IBPA principles and questions help bring about an intersectionality-informed shift in how policy actors understand social issues, social categories, and their interactions. This includes considerations often overlooked in GM frameworks, including relationality, reflexivity, social justice, processes of power creating differential health, and resilience (Hankivsky et al., 2012). In recent years IBPA has been widely recognized and applied, including for example, as a promising equity tool by the NCCHPP and the National Collaborating Centre for D ­ eterminants of

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Health (Mendell et al., 2012); a key resource by the UNHCR in 2015 (https://data2.unhcr.org); a guiding framework for the European project SOPHIE (­Evaluating the Impact of Structural Policies on Health Inequalities) (Palència et al., 2014) and for the NCCHPP (2015); and for informing various forms of interdisciplinary and collaborative policy work (e.g., Public Policy & Governance Review, 2017). The IBPA tool has been applied across a wide range of social policy issues and fields, including violence (CREVAWC, 2015; Etherington & Baker, 2018; Ghafournia & Easteal, 2018), mental health and substance use (Campeau, 2020; Hunt & Antin, 2019; Hunting et al., 2015), architecture (Bachman & Bachman, 2017), social work (Mulé, 2015), and housing and homelessness (Morris & Pin, 2020; Zufferey, 2017). HIV/AIDS policy ( Jordan-Zachery, 2018); Indigenous policies (Clark, 2012; Hankivsky & Jordan-Zachery, 2019); and the representation of women who are minority-group members in STEM fields (Armstrong & Jovanovitch, 2015). All of the applications demonstrate the importance intersecting inequalities that occur at multiple levels. The following example on migrant health demonstrates the application and value-added of this approach, particularly with respect to GM-related approaches.

EXAMPLE: APPLYING IBPA TO MIGRANT HEALTH Migration is a recognized determinant of health (Ingleby, 2012; International Organization for Migration [IOM], 2009; Fleischman et al., 2015; Mckenzie & Kesner, 2016; Marmot, 2016). Health-related issues that have been linked to migration and displacement include mental and reproductive health issues, nutrition disorders, and addiction and exposure to violence (World Health Organization Europe [WHO EURO], 2016). In addition, many migrants face barriers to accessing health services. There is also evidence that many are relatively healthy upon arrival in a destination country but that their health can deteriorate over time (Rechel et al., 2013). The urgency of improving migrant health and migrant health care has been highlighted by WHO and its partner organizations (e.g., IOM, 2013, 2017; WHO, 2008, 2017a, 2017b, 2017c, 2017d; WHO EURO, 2016; UNHCR, 2016), and key framings for moving forward include ensuring gender-, culture-, and migrant-sensitive services. And a recent WHO report on women, migration and care work incorporated an intersectional approach to extend gender analysis by allowing for a “nuanced understanding of how migration to care affects individual women” and how “the identity of migrant women care workers can affect their own experience of the costs and benefits of migration” (WHO, 2017a, section 1.6). Below we discuss some of the limitations of the current focus on gender-sensitive services for migrants, and how intersectionality can potentially address them.

Gender-Sensitive Services: Key Limitations Ensuring gender-sensitive care is a top priority within migrant health strategies and initiatives (e.g., European Parliament, 2016; IOM, 2013; WHO, 2008, 2017b, 2017c, 2017d; WHO EURO, 2016). This is to respond to what are often framed as gender-specific needs and primarily discussed with respect to particular challenges faced by migrant and refugee women and girls

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in relation to health and health care. These challenges relate to maternal, newborn, and child health, sexual and reproductive health, and violence (WHO EURO, 2016). Policies and strategies are recognizing, for example, that women can experience high levels of discrimination, exploitation, and abuse during the migration process, are more vulnerable than men at all points of the process (Kawar, 2004), and experience barriers to accessing health services, including but not limited to reproductive and sexual health (Davies et al., 2009; UNHCR, 2016; UN Women, 2016). Addressing the gender-related needs of migrant populations has been argued to be central to improve migrant health, along with meeting cultural, linguistic, and religious needs (e.g., IOM, 2017; WHO, 2017d). Despite the clear need to address such concerns, there are limitations in focusing on gender alone or prioritizing gender as an a priori entry point to improve migrant health. A key p ­ rinciple of IBPA – “Intersecting Categories” – underscores that social categories such as gender or women (and other categories including “race”/ethnicity, Indigeneity, gender, class, gender identity, sexuality, geography, age, disability/ability, migration status, religion) interact and ­co-constitute one another to create unique social locations that vary depending on time and place. These interactions occur within systems and structures of power (another key IBPA principle), that shape experiences of privilege and oppression (Hankivsky et al., 2012). Migrant health can be seen as situated within these intersections. These principles make clear that a primary focus on gender or women and girls reduces a d ­ iverse migrant population to singular, distinct categories via which their experiences are understood. Even when other factors or categories are examined (e.g., gender + culture + religion), the t­endency to see them as having cumulative or independent individual-level effects overlooks how, for ­example, gendered relations are structured by a multitude of intersecting factors and processes of power, including geography, migration trajectories, racialization, heterosexism, national and transnational policies and laws, and poverty. This is important to emphasize, given the focus has tended to ­remain on individual-level characteristics that make migrants vulnerable, overlooking the social positions and structural conditions of certain migrant groups (e.g., asylum seekers) (Castañeda, 2009; S ­ eeleman et al., 2015). Overall, an IBPA can advance understandings of and responses to migrant health through the following: • Moving beyond an a priori focus on gender and/or women and girls, which can also bring greater attention to populations that are often excluded with such a focus (e.g., gender-diverse groups, men, boys). • Allowing for other salient and perhaps more important intersecting factors that shape migrant health (including women’s and girl’s health) to be identified; this includes interrogating which groups are being discussed (and which are not), why, and whether factors such as disability, sexual orientation, or migrant status are being considered. • Bringing attention away from assumedly static vulnerable or at-risk groups (e.g., women or cultural groups) towards processes of power – within and beyond health care – that can both privilege and disadvantage migrants differentially within and across groups, such as xenophobia, heterosexism, transnational institutions, and discriminatory policies. This can better

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contextualize what makes some people more vulnerable or confers more advantage than others across migration trajectories. • Promoting more multidimensional and comprehensive understandings of and responses to migrant health, both within and beyond health care systems, that align with the experiences of migrants. The broader scope that intersectionality brings to the table can thus inform both gender-sensitive and other dominant approaches to improving migrant health in policies, including culturally sensitive and migrant-sensitive health services that reflect migrant heterogeneity. In addition, it can help answer the call for more diversity-sensitive (e.g., Rodriguez & Leralta, 2015; Razum & Spallek, 2014; Seeleman et al., 2015), cross-sectoral, and equitable approaches to address the health implications of modern migration (IOM, 2017; Zimmerman et al., 2011). As migrant health expert David Ingleby (2014) recently underscored, there is a need to overcome fragmentation and siloed approaches to addressing migrant health inequity (e.g., focusing on separate factors and sources of inequity) and an imperative to “join forces to develop an intersectional approach” (p. 1).

CONCLUSION While it is promising to see the transformative potential of intersectionality taking root in the world of mainstreaming and especially in health, both internationally and in Canada, there is a need for caution regarding the conceptual confusion and partial or incorrect interpretations of intersectionality, which can create significant limitations with respect to mainstreaming or promoting equity across diverse groups. It is critical that intersectionality is not considered an add-on to traditional gender equality or GM approaches, but rather an explicit rejection of the concept of “gender-first.” Tools, including IBPA, that are intersectionality-first approaches can allow for exploration of inequities of diverse populations, including and beyond examinations of gender and gender inequity. Moving forward, it is also important that the key tenets of intersectionality, as articulated in this chapter, are made explicit throughout any intersectional approach, to avoid its misappropriation or misuse as a “tool” void of structural considerations or socially transformative intentions (as has ­often occurred with GM) (Enarsson, 2015). Further, there is a need to position gender and ­gendered processes as inextricable from other intersections of inequity – in this, gender does not get lost in intersectional inequity, but rather is complicated and understood in greater nuance.

DISCUSSION QUESTIONS 1 What are the key differences between a gender analysis and an intersectionality analysis? 2 What are the problems with how intersectionality has been brought into the discussions and applications of gender analyses? 3 What are the strengths and limitations of SGBA+? 4 What are the critical steps to ensuring that there is no conflation between a gender and an intersectionality approach to women’s health?

From Gender Mainstreaming towards Mainstreaming Intersectionality NOTES 1 As stated by the European Institute for Gender Equality (2019), gender mainstreaming has been embraced internationally as a strategy towards realizing gender equality. It involves the integration of a gender perspective into the preparation, design, implementation, monitoring, and evaluation of policies, regulatory measures, and spending programs, with a view to promoting equality between women and men and combating discrimination. 2 The mainstream can be understood as the centre of analyses and policy decisions, reaching key institutional structures and processes of power that affect policy decisions and policy priorities. 3 In the area of health, we would add that it is often both a sex- and gender-first approach. 4 Includegender.org is a cooperative venture that involves the European Social Fund, the SSGR, the County Administrative Board, the Swedish Association of Local Authorities and Regions, the Swedish Gender Equality Agency, and the Swedish Governmental Agency for Innovation Systems. For more ­information, see http://www.includegender.org/about-us/includegender-org. 5 The framework consists of a set of 12 descriptive and transformative overarching questions, grounded by the principles, which act as a flexible and practical guide for policy actors to understand the equity-­ relevant implications of policy processes at multiple levels. For more information, please see Hankivsky et al. (2012). Intersectionality-based policy analysis. In O. Hankivsky (Ed.), An intersectionality-based policy analysis framework (pp. 33–45). International Institute for Restorative Practices; Simon Fraser University. REFERENCES Armstrong, M. A., & Jovanovic, J. (2015). Starting at the crossroads: Intersectional approaches to institutionally supporting underrepresented minority women STEM faculty. Journal of Women and Minorities in Science and Engineering, 21(2), 141–157. https://doi.org/10.1615/JWomenMinorScienEng.2015011275 Bacchi, C., & Eveline, J. (2009). Gender mainstreaming or diversity mainstreaming? The politics of “doing.” NORA – Nordic Journal of Feminist and Gender Research 17(1), 2–17. https://doi.org/10.1080 /08038740802689133 Bachman, L., & Bachman, C. (2017). Intersectionality, oppression, and opportunity in architecture: Claiming the social complex [Conference presentation]. ARCC 2017 Conference, Salt Lake City, UT, United States. https://www.brikbase.org/content/intersectionality-oppression-and-opportunity-architecture-claiming -social-complex Bianco, M. (2017). Why gender research matters more than ever. UpRising: News from the Michelle R Clayman Institute for Gender Research at Stanford University, 5(2017). https://gender.sites.stanford.edu /sites/g/files/sbiybj5961/f/uprisingfinal.pdf Buse, K., & Hawkes, S. (2015). Health in the Sustainable Development Goals: Ready for a paradigm shift? Globalization and Health, 11(1), 13. https://doi.org/10.1186/s12992-015-0098-8 Bustelo, M. (2009). Spain: Intersectionality faces the strong gender norm. International Feminist Journal of Politics, 11(4), 530–546. https://doi.org/10.1080/14616740903237491 Bustelo, M. (2017). Evaluation from a gender + perspective as a key element for (Re)gendering the policymaking process. Journal of Women, Politics, and Policy, 38(1), 84–101. https://doi.org/10.1080/1554477X.2016.1198211 Campeau, K. (2020). Medicalized definitions of severe mental illness: a qualitative analysis of Nova Scotia’s mental health policies, strategies & legislation. https://scholar.acadiau.ca/islandora/object/theses:3480 Canadian Institutes of Health Research. (2017, March 24). Statement from Dr. Jane Aubin: Promoting equity and excellence in health research. http://www.cihr-irsc.gc.ca/e/50272.html Canadian Institutes of Health Research. (2018). Science is better with sex and gender: Strategic plan 2018–2023. CIHR Institute of Gender and Health. http://www.cihr-irsc.gc.ca/e/documents/igh_strategic_plan_2018 -2023-e.pdf Canadian Research Institute for the Advancement of Women. (2009). Everyone belongs: A toolkit for applying intersectionality.

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CHAPTER NINE

Beyond Sex and Gender Differences in Funding and Reporting of Health Research Olena Hankivsky, Kristen W. Springer, and Gemma Hunting

Scholars, policymakers, and health care providers worldwide have argued that improving the ­quality and rigour of scientific evidence requires taking into account sex and gender as key factors in health research (Gahagan et al., 2015; Geller et al., 2013; Hammarström & Annandale, 2012; Hawkes & Buse, 2013; Heidari et al., 2012; Pinn, 2013; Ritz et al., 2014; Sharman & ­Johnson, 2012). The inclusion of sex/gender1 is considered essential for addressing knowledge gaps and producing more accurate and comprehensive information about gendered health experiences, ­interactions with the health care system, unequal/unfair health outcomes, and the meaning (and measurement) of health itself. Most recently, significant attention has shifted to funding agencies and scientific journals and how they can be harnessed to require researchers to address sex/gender in their research (­Canadian Institutes of Health Research [CIHR], 2013, 2016; Clayton & Collins, 2014; Del Boca, 2016; ­Gahagan et al., 2015; Geller et al., 2011; Heidari et al., 2012; Institute of Medicine Board on Population Health and Public Health Practice, 2012; Johnson et al., 2014; League of European Research Universities, n.d., 2010, 2015; Schiebinger et al., n.d.; European Association of S ­ cience Editors, 2015; Tannenbaum et al., 2019; Welch et al., 2017; White et al., 2021). To date, a number of attempts have been made to highlight promising practices of national-level funding agency policies (e.g. Johnson & B ­ eaudet, 2013; J­ ohnson et al., 2014; Schiebinger et al., n.d.; Sharman & Johnson, 2012), to report on North A ­ merican and ­European Union (EU) national-level funding agency trends in relation to sex/­gender (e.g.,­ European Commission, 2011, 2014), and to review and respond to existing sex/gender policies within academic journals (Gahagan et al., 2015; Heidari et al., 2016). However, we know of no systematic analysis documenting to what extent both national

The original version of this chapter appeared in Hankivsky, O., Springer, K. W., & Hunting, G. (2018). Beyond sex and gender difference in funding and reporting of health research. Research Integrity and Peer Review, 3, 6. https://doi .org/10.1186/s41073-018-0050-6. The chapter was published originally under Creative Commons Attribution License 4.0 International Licence (https://creativecommons.org/licenses/by/4.0/).

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health funding agencies and scholarly journals require attention to sex/gender, what conceptual explanations and practical guidance are given for such inclusion, and, finally, whether existing practices reflect the reality that sex/gender cannot be separated from other axes of inequality. Our research addresses this gap by systematically examining official statements about sex/­ gender inclusion from 45 national funding agencies that fund health research across 36 countries (covering the regions of the EU and associated countries, North America, and Australia), and from 10 top-ranking general health and 10 sex- and/or gender-related health journals. The purpose of the study is two-fold: to determine the extent to which key agencies and select journals require any inclusion of sex/gender considerations and to what extent existing strategies reflect state of the art understandings of sex/gender, including how sex/gender interact with a myriad of other factors (e.g. race, ethnicity, socio-economic status, age) to shape health. Investigating funding organizations and journals in tandem is logical because they are inextricable. As Del Boca (2016) explained: “Sex/gender issues in the conduct of scientific studies are mirrored in the scholarly journals that publish that research” (p. 1). At the same time, we place special emphasis on funding agencies as they are instrumental in generating research – knowledge production – which then, in turn, scholarly journals report. Based on our findings, we provide recommendations and supporting questions that journals, agencies, and scholars can use to ensure scholarship is more consistent with contemporary understandings of sex/gender. Specifically, our intervention is aimed at improving the conceptualization and application of sex/gender to better capture the plethora of interacting and complex factors that shape health and that can inform the efforts of funding agencies and journals to advance scientific excellence in the production and reporting of health research.

CONTEMPORARY FRAMINGS OF SEX/GENDER While the importance of understanding biological and social factors associated with the health of men and women is widely acknowledged, conceptual and methodological approaches for actually doing this have evolved significantly. Understandings have deepened about the complex relationship between sex and gender (Tannenbaum et al., 2016), and new insights have emerged about how sex/gender interfaces with other determinants of health, including socioeconomic status, race, ethnicity, sexuality, and geographic location. In using the term sex/gender we are arguing, despite the reality that they are often separated in research and policy applications, that there are very few cases of stand-alone “sex biology,” and instead discussion and analyses of “sex” should proceed with the assumption of sex/gender interconnectedness unless proven otherwise.2 One can imagine the concept of gender without links to specific biological factors, and we therefore talk about gender, not sex/gender, when discussing social factors not linked to biology. We also highlight, as elaborated below, that discussions of social factors in the field have extended beyond static and standalone considerations of gender (Springer et al., 2012). For example, in a 2012 special issue of gender and health for Social Science and Medicine, Springer et al., (2012) outlined two cutting-edge strategies for understanding sex/gender in the context of health research: relational and intersectional approaches. Relational constructions of gender recognize gender as dynamic and situational, prioritize attention to differences among women and

Beyond Sex and Gender Differences in Funding and Reporting of Health Research

men, and understand gender as a property of social norms, relationships, structures, ideologies, and so on, rather than something a person embodies. For example, understanding gender in this way could include exploring the gendered health effects of family leave policies or understanding the consequences of the male breadwinner norm. Understanding gender as structural/relational also means that gender is so deeply embedded in social life that it is rarely (if ever) possible to separate sex from gender in human beings, and therefore sex/gender should be modelled and explored ­together as the default. When the intersection of sex/gender cannot be empirically investigated, it is essential that the intersection be theorized and used as a lens to articulate any “sex” effects. One incredible benefit of acknowledging and modelling “sex” as integrally intertwined with gender is the necessary conclusion that any male/female difference is not a “sex” (read biological) difference. Indeed, rigorous sex/gender analyses require taking the biological (as well as social structural aspects) of male/female health differences very seriously. Accordingly, it is imperative to understand that sex is not a mechanism. If the proposed male/female health differences are (in part) biological differences – then model those biological differences. This is good science. For ­example, if the proposed male/female health difference results from body fat differences, then study body fat differences and not “sex.” Be specific about the biological mechanisms and study those – or at the very least theorize and articulate those mechanisms if they cannot be directly studied (see Springer et al., 2012, for further explication and more examples). Intersectionality prioritizes the interaction of various factors and structures in the construction of health, such as sex/gender, age, race/ethnicity, and socioeconomic status, and in so doing, decentres the prioritization of sex/gender in health research and policy analysis to allow for more nuanced, diversity-sensitive, and complete understandings of the plethora of health determinants. Intersectionality also goes beyond a simple additive approach (e.g., sex/gender plus attention to other factors). Instead, the perspective advances an understanding of how various factors, including but not limited to sex/gender, relate and interact with one another at a group, process, and structural level (Choo & Ferree, 2010; Hankivsky, 2012; Hankivsky et al., 2015; Hankivsky et al., 2017). Intersectionality can be applied to understanding individual level experiences but always in the context of attention to broader social divisions. Focusing on a broad set of interacting factors produces evidence that more accurately captures the complexity and diversity of health (Hankivsky et al., 2017; Hawkes & Buse, 2013; Marmot & Allen, 2014). Accordingly, intersectionality is now well established as a key and leading framework for accurately understanding and responding to health inequities and for improving health (Ailshire & House, 2011; Bauer, 2014; Blom et al., 2016; Bowleg, 2008; Bowleg & Bauer, 2016; Brown & Hargrove, 2013; Hankivsky, 2011, 2012; Hinze et al., 2012; Hunting & Hankivsky, 2020; Marmot & Allen, 2014; Richardson & Brown, 2016; Schulz & Mullings, 2006; Shim, 2014; Veenstra, 2013). In sum, relational and intersectional approaches reflect the most recent theoretical developments in the field and have the potential to disrupt a number of problematic trends in sex/gender research, including binary constructions of sex (male versus female) and gender (masculine versus feminine), the treatment of sex and gender as easily separable, and the disconnection of sex/gender from other health-influencing factors. As the research articles in the Springer et al. (2012) special issue persuasively illustrate, relational and intersectional approaches capture sex/gender complexities and highlight the need to capture intersections of biological factors and other forms of social

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differences – including but not limited to sex/gender. In sum, these approaches can better and more accurately illuminate the diverse health of men and women and, in so doing, produce better science and ultimately improved health outcomes.

EXISTING GUIDANCE FOR INTEGRATING SEX/GENDER IN HEALTH RESEARCH AND JOURNAL REPORTING Funding agencies and journals have been referred to as change agents because they have the ­potential to improve the accuracy and rigour of knowledge production and reporting on current and emerging health challenges across populations ( Johnson & Beaudet, 2013). Not surprisingly, there has been increased attention to how improvements can be made in the way sex/gender is approached in research, reporting, and the peer review process. For example, in box 9.1 below, ­Gahagan et al. (2015) have produced instructions intended to support researchers and peer reviewers by directing them towards relying on important tools and resources.

BOX 9.1 INSTRUCTIONS FOR AUTHORS AND PEER REVIEWERS Journals can offer the following to authors and peer reviewers: • Examples of sex and gender definitions on journal websites to ensure accuracy • Resources for authors about best practices on sex and gender analysis in their research field • Online resources for training of new peer reviewers on the roles of sex and gender in both basic science and health research • Links to existing training materials for health researchers and peer reviewers that have been or are being developed by organizations such as CIHR, National Institutes of Health (NIH), GENDER.NET, and others. Source: Created by authors, with information from Gahagan, J., Gray, K., & Whynacht, A. (2015). Sex and gender matter in health research: Addressing health inequities in health research reporting. ­International Journal for Equity in Health, 14, Article 12. https://doi.org/10.1186/s12939-015-0144-4.

More recently, Heidari et al. (2016) published SAGER (sex and gender equity in research) guidelines (box 9.2) that include general principles and prompts to help standardize sex and gender reporting in scientific publications. These guidelines are intended to be applicable to all research with humans, animals, or any material originating for humans and animals (e.g. organs, cells, tissues). Also included in the SAGER guidelines is an authors’ checklist for gender-sensitive reporting (box 9.3).

Beyond Sex and Gender Differences in Funding and Reporting of Health Research

BOX 9.2 SEX AND GENDER EQUITY IN RESEARCH (SAGER) GUIDELINES: GENERAL PRINCIPLES • Authors should use the terms sex and gender carefully to avoid confusing both terms. • Where the subjects of research comprise organisms capable of differentiation by sex, the research should be designed and conducted in a way that can reveal sex-related differences in the results, even if these were not initially expected. • Where subjects can also be differentiated by gender (shaped by social and cultural circumstances), the research should be conducted similarly at this additional level of distinction. Source: Created by authors with information from Heidari, S., Babor, T. F., De Castro, P., Tort, S., & Curno, M. (2016). Sex and gender equity in research: rationale for the SAGER guidelines and recommended use. Research Integrity and Peer Review, 1, Article 2. https://doi.org/10.1186/s41073-016-0007-6

BOX 9.3 AUTHORS’ CHECKLIST FOR GENDER-SENSITIVE REPORTING Research Approaches ✓ Are the concepts of gender and/or sex used in your research project? ✓ If yes, have you explicitly defined the concepts of gender and/or sex? Is it clear what aspects of gender and/or sex are being examined in your study? ✓ If no, do you consider this to be a significant limitation? Given existing knowledge in the relevant literature, are there plausible gender and/or sex factors that should have been considered? If you consider sex and/or gender to be highly relevant to your proposed research, the research design should reflect this. Research Questions and Hypotheses ✓ Does your research question(s) or hypothesis/es make reference to gender and/or sex, or relevant groups or phenomena (e.g., differences between males and females, differences among women, seeking to understand a gendered phenomenon such as masculinity)? Literature Review ✓ Does your literature review cite prior studies that support the existence (or lack) of significant differences between women and men, boys and girls, or males and females? ✓ Does your literature review point to the extent to which past research has taken gender or sex into account? Research Methods ✓ Is your sample appropriate to capture gender- and/or sex-based factors? ✓ Is it possible to collect data that are disaggregated by sex and/or gender?

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✓ Are the inclusion and exclusion criteria well justified with respect to sex and/or gender? (Note: this pertains to human and animal subjects and biological systems that are not whole organisms) ✓ Is the data collection method proposed in your study appropriate for investigation of sex and/or gender? ✓ Is your analytic approach appropriate and rigorous enough to capture gender and/or sex-based factors? Ethics ✓ Does your study design account for the relevant ethical issues that might have particular significance with respect to gender and/or sex? (e.g., inclusion of pregnant women in clinical trials) Source: Heidari, S., Babor, T. F., De Castro, P., Tort, S., & Curno, M. (2016). Sex and gender equity in ­research: rationale for the SAGER guidelines and recommended use. Research Integrity and Peer ­Review, 1, Article 2. httsp://doi.org/10.1186/s41073-016-0007-6. Adapted by Heidari et al. from ­Canadian Institutes of Health Research (2013).

The first problem in directing researchers to existing approaches, resources, and training materials is that they simply replicate the status quo. Second, the general guidelines proposed by Heidari et al. (2016) emphasized the importance of proper conceptualization of sex/gender but provided definitions in the appendix that place researchers at risk for replicating approaches that fail to capture the fundamentally interconnected relationship of sex/gender. And, in the more ­detailed instructions to authors regarding “recommendations per section of the article,” a statement is made that “authors should consider all possible explanations for sex- and gender-related phenomena including social, cultural, biological and situational factors, recognizing that many sex-related ­behaviours might result from either cultural factors or biological factors” and doing so subsumes the importance of other factors to sex/gender (Heidari et al., 2016, p. 4). While these efforts are an important start, they do not sufficiently incorporate contemporary conceptualizations of sex/­ gender and provide little guidance on how to situate sex/gender in relation to other factors that shape and influence health.

METHODS Our research focused on two distinct areas of research enquiry: peer-reviewed scientific journals and national-level public funding agencies (see figures 9.1 and 9.2 for details of the search strategies). For our search of peer-reviewed scientific journals (see figure 9.1), we focused on two overarching sets of journals – health-research journals more generally and health-research journals focused

ii) Identify top 10 gender or sex focused health journals

i) Identify top 10 health research journals

Identify top 5 health journals

Identify top 5 health journals

Identify all health journals

from Science Edition (SCIE) Database in Thomson Reuters

from Social Science Edition (SSCI) Database in Thomson

relevant to SCIE and SSCI

Journal Citation Reports

Reuters Journal Citation

Database based on Eigenfactor rating

Reports Database based on

database searches combined

First 500 titles reviewed to gender, diversity and/or inclusion.

Eigenfactor rating

Identify top 10 relevant journals with search criteria based on Eigenfactor rating

Export list of all journal titles found into an excel sheet and search titles for women* OR men* OR gender using search

Website Review

function

a. Go to journal website b. Review author guidelines (and linked documents/sites if applicable) for information c. mentioning: sex, gender, diversity, inclusion, etc.

Record Findings

Review journal descriptions for the above criteria

Record relevant information related to sex, gender, and diversity found on the journal websites

1. Science Edition (SCIE) database search for health research journals used the following broad categories: Health Care Sciences and Services; Medicine,

3. to compile health research journals.

General and Internal; Primary Health Care; Nursing; and Public, Environmental, and Occupational Health. These categories were used based on author

4. This scan occurred to assess which search keywords would be appropriate to

either database search as their inclusion produced results predominantly

journal titles were potentially relevant (e.g., Maternal and Child Health

focused on these areas.

Journal, Disability & Health Journal, Journal of Urban Health, etc.) the authors

2. Social Science Edition (SSCI) database search for health research journals used the following broad categories: Health Policy and Services; Nursing; Public, Environmental, and Occupational Health; and Social Sciences, Biomedical. These categories were used based on author consensus.

decided to limit the journal title search terms scope to sex and/or gender. Note: No relevant titles contained ‘diversity’, ‘inclusion’, or ‘sex’. 5. Guidelines and journal descriptions were manually searched for words relating to axes of diversity, including sex, gender, diversity, inclusion, age, ability, sexual orientation or sexuality, race, ethnicity, culture, dis/ability, and socioeconomic status.

Figure 9.1.  Health journal search

Source: created by chapter authors. First cited in: Hankivsky, O., Springer, K. W., & Hunting, G. Beyond sex and gender difference in funding and reporting of health research. Research Integrity and Peer Review, 3, 6. https://doi.org/10.1186/s41073-018-0050-6.

Identify national-level public funding agencies via recent reviews

Gendered Innovations Website Agencies

Gender-Net EU Website

EC 2009 & 2014 reports

Identify further agencies via Google search : (government OR national) AND funding AND (guide* OR strateg* OR framework* OR policy OR policies)

Agencies were excluded if they: - were not publicly funded - did not encompass health research

Record Findings

Website Review

phase and focus on N. America, EU and associated country agencies, and Australia for the purposes of this review.

a. Go to their websites b. With funding website search function, look for “sex OR gender OR diversity OR inclusion”; c. manually explore results

Record relevant information related to sex, gender, diversity and/or inclusion found on the agency websites

1. The Gendered Innovations Project Website: “Sex and Gender Analysis Policies of Major Granting Agencies”, recently updated in 2015 (http://genderedinnovations.stanford.edu/sex-and-gender-analysis-policies-major-granting-agencies.html). Countries included: Austria, Canada, France, Germany, Ireland, Norway, Spain, US 2.

der-net.eu/spip.php?rubrique27&lang=en). Countries included: Belgium, Canada, Cyprus, France, Ireland, Israel, Norway, Slovenia, Spain, Switzerland, UK and US

Record relevant information found in reviews of funding agencies (sources 1-3) that is not evident on the websites

Excluded if site has no information available in English (i.e., Mexican National Council for Science & Technology (CONACYT))

Excluded information related to EU-wide initiatives

4. Australia and Mexico 5. This search term was used to locate potentially relevant results. Potential results were manually searched for diversity-related terms. If no search function found on agency website (i.e., Czech Republic), the funding agency site was explored manually. In the cases where a Boolean operator combined term search produced no results (possibly indicative of a limited search function), each term was searched separately and results reviewed. 6. Government ministries were only included if directly responsible for health

3. European Commission Reports: (i) “The Gender Challenge in Research Funding: Assessing the European National Scenes” (2009); and (ii) “Analysis of the state of play of the European Research Area in Member States and

research umbrella agency, this larger body was also included.

4 “Adoption of measures relating to the gender dimension in research programmes” pp. 44-53. For both reports, countries under study included: all 28 EU member states and 5 associated countries.

Figure 9.2.  Funding agency search

Source: Created by chapter authors. First cited in: Hankivsky, O., Springer, K. W., & Hunting, G. Beyond sex and gender difference in funding and reporting of health research. Research Integrity and Peer Review, 3, 6. https://doi.org/10.1186/s41073-018-0050-6.

Beyond Sex and Gender Differences in Funding and Reporting of Health Research

on gender and/or sex more specifically. Journals were located using Thomson Reuters ­Journal ­Citation Reports database. To identify the top 10 health-research journals, we chose the top five journals in the Science Edition (SCIE) database for 2014 and the top five journals in the Social Science Edition (SSCI) database for 2014.3 Journal ranking was based on Eigenfactor ratings. To identify the top 10 gender- and/or sex-focused journals, we examined top health journals relevant to both databases combined that contained (women* OR men* OR gender) in the title.4 For all journals, the author guidelines on each journal website (and any other documents that were linked to guideline information) were reviewed. This review involved a search for information mentioning sex, gender, diversity, inclusion, and/or factors related to diversity (e.g., race, ethnicity, age). Our search of key funding agencies (see figure 9.2) involved a review of existing m ­ ulti-country inventories, including (a) the Gendered Innovations Project website (Schiebinger et al., n.d.), which contains information related to major granting agencies from across the United States, EU member states, and Canada on existing methods for sex and gender analysis;5 (b) the ­GENDER-NET (n.d.) EU website, a European Research Area Network composed of 13 national program owners from the EU and associated countries and North America working to promote gender equality through structural change in research institutions and the integration of sex and gender into ­research analyses; (c) two key European Commission reports: The Gender Challenge in Research Funding: Assessing the European National Scenes (European Commission, 2009), and Analysis of the State of Play of the European Research Area in Member States and Associated Countries: Focus on ­Priority Areas (European Commission, 2014); and (d) a Google search for national-level public funding bodies that may have been missed in the aforementioned inventories.6 Funding agencies differed in their range and scope. We used the framework of the Gendered Innovations Project as the foundational template for our assessment of funding organizations, and then expanded on this excellent foundation by systematically searching each identified agency’s website for content relevant to sex, gender, diversity, and/or inclusion (including race, ethnicity, sexuality, age, ability, etc.).

RESULTS Research Journals The top 10 health research journals demonstrated differences between the social science and science groupings. Among the top five journals in the SSCI category, only the American Journal of Public Health contains a directive about using “non-discriminatory language” (which includes sexist language). In terms of sex/gender or attention to diversity, the only direction provided to authors is the following instruction from the American Journal of Public Health (2017) author guidelines: “If race/ethnicity is reported, the authors should indicate in the methods section why race/ethnicity was assessed, how individuals were classified, what the classifications were, and whether the investigators or the participants selected the classifications” (p. 22). Among the top five journals in the SCIE category, the situation is somewhat different. Except for the New England Journal of Medicine, all of the journals include some directions to authors

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about addressing sex/gender in reporting, including a section on “reporting sex” in the Journal of the American Medical Association (JAMA). There is also attention to factors in addition to sex/gender, most notably race/ethnicity (Lancet and JAMA) and also age (the British Medical Journal), and in the case of the Cochrane Database of Systematic Reviews, explicit attention to the factors that contribute to disadvantage, including residence, race/ethnicity, occupation, sex/gender, religion, education, socioeconomic position, and social capital. This is in line with the International Committee of Medical Journal Editors (2018), which has explicitly recognized the importance of age and race and ethnicity (in addition to sex/gender) for the conduct, reporting, editing, and publication of scholarly work in medical journals. In terms of the top 10 sex- and/or gender-focused journals that also discuss health, none have explicit reporting guidelines regarding sex/gender or diversity.

National Research Funding Organizations Across 36 countries, 20 countries had at least one funding agency that included some discussion of sex/gender on its website and/or secondary sources (see figure 9.3 for a map reflecting considerations of sex/gender and diversity by country and figure 9.2 for search methods). This accounted for 28 out of 45 funding agencies. The majority of these agencies focus on how to improve the underrepresentation of women in scientific research, including creating mechanisms for advancing male/female parity in research teams, organizational structures and funding success outcomes. For example, the Austrian Science Fund (FWF, n.d.) reports: “Since 2010, therefore, the FWF has prescribed a target quota of 30% female principal investigators/faculty members, and applicants are required to provide reasons in cases where this target level is not reached.” In comparison, less attention is paid to the actual sex/gender-related content of research in funding applications, specifically knowledge production. For example, only 15 agencies (in ­Austria, Canada, Germany, Ireland, the Netherlands, Norway, Spain, Sweden, Switzerland, United ­Kingdom, and United States) recognize the importance of sex/gender in research content. Further, only six funding agencies (in Canada, the Netherlands, Sweden, and the United States) specifically pay attention to factors of health beyond sex/gender in a way that would be consistent with an approach that responds to intersectionality – at least for some of their research programs.

DISCUSSION Our research findings, summarized above, show that there is no consistency in whether sex/gender is even mentioned in funding and publications guidelines, and this is even the case with scientific journals that are specifically focused on sex/gender. Our data also reveal that requirements that have been institutionalized within funding agencies tend to prioritize greater male/female equality in research teams and funding outcomes over considerations of sex/gender in research content and knowledge production. As we detail below, within these areas, there is wide variation in how sex/ gender are conceptualized and how researchers are asked to address the inclusion/exclusion of

Iceland

Finland Norway Estonia Latvia

Denmark Ireland

Lithuania

Netherlands UK Poland

Germany

Belgium

Czech Rep.

Luxembourg

Austria

France

Slovakia

Hungary Romania

Slovenia Switzerland

Croatia Portugal

Bulgaria

Italy Spain

Turkey Greece

Cyprus Malta

Considerations of sex/gender and diversity

Israel Considerations of sex/gender in knowledge production Considerations of sex/gender in any way Considerations of sex/gender not evident

Canada

Australia

US

Figure 9.3.  Considerations of sex/gender and diversity by country

Source: created by chapter authors. First cited in: Hankivsky, O., Springer, K. W., & Hunting, G. Beyond sex and gender difference in funding and reporting of health research. Research Integrity and Peer Review, 3, 6. https://doi.org/10.1186/s41073-018-0050-6.

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sex/gender in their research. Further, with very few exceptions, guidelines and criteria in both funding agencies and journals fail to recognize the real complexity of sex/gender, including the intersection of sex/gender with other key factors that shape health.

Knowledge Production in National Funding Agencies: Sex/Gender Treatment and Limitations One key finding in our research is that even when sex/gender knowledge production is addressed by national funding agencies, this does not mean that the agencies are modelling best practices for how sex/gender should be conceptualized and operationalized to best generate information and evidence to inform policy and practice. For example, in some agencies such as the NIH, the focus on sex as a biological variable is emphasized. To illustrate, starting in 2016, grant applicants have been asked to “explain how relevant biological variables, such as sex, are factored in to research designs and analyses for studies in vertebrate animals and humans” (NIH, 2015, p. 1). Although NIH acknowledges and encourages attention to gender issues in health, as well as biological factors, the focus is clearly on sex as a biological variable. Such an approach runs contrary to contemporary understandings of sex/gender and health that emphasize the fact that it is not possible to identify a pure “sex” (i.e., p ­ hysiologic) effect that is not influenced by “gender” (social and structural factors) (Springer et al., 2012). ­However, it may be possible to have gender not shaped by sex, as articulated earlier. Therefore, it is inaccurate and misleading to routinely and unquestionably report “sex” effects or “sex” differences as if to imply they operate independently of social construction. Second, other agencies conflate gender and sex, rather than seeing them as intertwined. For example, although the Research Council of Norway (2014) states that gender is a mandatory criterion in the assessment of grant applications, it provides the following definition, which subsumes sex into gender: “Gender as a perspective implies that biological and social gender is reflected in research content. A growing number of studies show that diversity, including gender balance and gender perspectives, helps to enhance the scientific quality and social relevance of research” (p. 4). Moreover, while it directs research to ensure that men and women must be represented in the groups being studied, the Council directs researchers to consider “whether the significance of the research results will be different for women and men,” minimizing the important possibility that similarities could also be discovered (Research Council of Norway, 2014, p. 10). Statements, guides, and toolkits that advance this difference framing lack nuance and risk essentializing difference. Sex/gender may have relevance for an array of outcomes but such statements may lead researchers to miss important similarities between men and women while also leading to high rates of statistically false “positives” for difference (Hankivsky et al., 2015; Patsopoulos et al., 2007; Springer et al., 2012). Among those agencies that pay attention to sex/gender, with very few exceptions (e.g., CIHR, Irish Research Council, FWF, NIH), little guidance is provided for how to conceptualize or actually integrate sex/gender in the work. Agencies often state the importance of a “gender perspective,” “gender dimension,” “social differences between men and women in health research,” “biological

Beyond Sex and Gender Differences in Funding and Reporting of Health Research

sex,” or “sex/gender” without actually demonstrating what this would entail in a research application or how it would transform the design of a research application. Within the agencies that actually focus on sex/gender in knowledge production, the dominant approach is to distinguish between sex and gender – as if separable, such as those found in CIHR and in Toolkit: Gender in EU-Funded Research (European Commission, 2011), used by the Irish Research Council and Austrian FWF. For example, since 2010, the CIHR (which houses the only specific funding institute dedicated to gender, sex, and health research in the world – the Institute of Gender and Health [IGH]) has also distinguished itself internationally by implementing a mandatory requirement that all applicants indicate whether and how they are taking sex/gender into account in their research by answering the following questions: • Are sex (biological) considerations taken into account in this study? Yes/No • Are gender (socio-cultural) considerations taken into account in this study? Yes/No • If YES please describe how sex and/or gender considerations will be considered in your ­research design. • If NO please explain why sex and/or gender considerations are not applicable in your research design. CIHR applicants can refer to the Gender, Sex, and Health Research Guide: A Tool for CIHR Applicants to assist in answering these questions (CIHR, 2013). The tool is divided into distinct steps in the research process: research questions and hypotheses, literature review, research questions, research methods, and ethics. The tool primarily focuses on sex and/or gender but does direct ­researchers to consider in their research questions or hypotheses differences within men and women. Further, the Irish Research Council (2016) “requires all applicants to indicate whether a ­potential sex and/or gender dimension may be present or could arise in the course of their proposed research and, if so, outline how sex/gender analysis will be integrated in the design, implementation, evaluation, interpretation and dissemination of the results” (p. 16). The Council directs researchers to fill out a sex-gender dimension statement and the Austrian FWF explains how to account for gender in all phases of the research cycle by referring to the Toolkit: Gender in EU-Funded Research (European Commission, 2011), which includes similar questions to those found in the CIHR research guide. The FWF divides its questions for taking gender into account in research content into categories of research ideas phase, proposal phase, research phase, and dissemination phase. Some offices of the NIH – such as the NIH Office of Women’s Health – provide useful guidance, including an infographic defining sex and gender, along with providing examples of how both sex and gender affect particular health conditions. This is an important and encouraging start, especially as the graph acknowledges that “while sex and gender are distinct concepts, their influence is often inextricably linked” (NIH Office of Research on Women’s Health, n.d., para. 1). NIH has also produced recommendations for incorporating sex/gender in health research, emphasizing the necessity of reporting: “One overarching feature of considering sex (and gender) in biomedical research is the essentiality of reporting at every stage” (Clayton, 2015, p. 2).

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Sex/Gender Interactions with Other Axes of Inequality In terms of journals, as was noted in the findings above, there is some acknowledgment of factors beyond sex/gender, but these are predominantly limited to age and race/ethnicity, thus excluding consideration of a more comprehensive possibility of health-affecting influences. Moreover, none of the journals we examined acknowledge complex relations and interactions between factors in a manner that would be considered consistent with an intersectional approach. Instead, different factors are treated in a more additive, grocery list fashion. When sex/gender are specifically addressed by funding agencies, they tend to present sex/gender as primary and dominant influences on all domains of health. Importantly, these approaches fail to properly contextualize the interactions of sex/gender with other axes of inequality and can therefore fail to advance understandings of critically important differences among women and men. Exceptions include the Swedish Research Council (2015), which explicitly states that it strives “to take into account how categories other than gender can also lead to an evaluation bias or create status hierarchies that interact with the gender power structure” (p. 8). Another important exception is the Netherlands Organization for Health Research and Development (ZonMw), which exists under the Netherlands Organization for Scientific Research. According to the agency, it is important to pay attention to diversity and target group differentiation by characteristics such as sex, age, socio-economic situation, educational level, migratory and cultural backgrounds, and sexual inclination, inasmuch as these are relevant to the theme of the project. (ZonMw, 2020, section 4)

At the same time ZonMw does note that “we are currently looking to develop more specific guidelines for assessment of grant applications in terms of considerations of diversity, as well as checklists to help researchers better integrate gender and other forms of diversity in their research” (ZonMw representative, personal communication, July 2016). The final European example is that of the UK Research Council, which probes applicants to consider the following: Which individuals or groups are likely to be affected by this policy/project/initiative? What is the likely impact on these groups, and how have you arrived at this judgement? If there is potential for a negative impact, what actions can be taken to mitigate the effect? Can this policy/project/initiative be used to help promote equality and diversity? And, importantly, the Council encourages public participation in relevant research projects to ensure that there is an opportunity for a wide range of voices to be involved in the research. There are also indications that within some quarters of the NIH and CIHR in North America, important shifts are occurring – albeit slowly. For example, the NIH requires reporting sex/gender, race, and ethnicity inclusions information for clinical research (as required by the NIH Policy on the Inclusion of Women and Minorities in Clinical Research) and the format does ask scholars to report the sex/gender and race/ethnicity together, showing progress towards being able to identify groups of people with multiple marginalized identifiers. However, only applications for applicable Phase III clinical trials must go beyond reporting inclusions and must include a “description of plans to conduct valid analyses” of sex/gender and/or race/ethnic differences (NIH, 2001, section II.B.1).

Beyond Sex and Gender Differences in Funding and Reporting of Health Research

In 2015 the CIHR and SSHRC (Social Sciences and Humanities Research Council) in ­ anada developed guidelines for integrating sex/gender (specifically called Healthy and Productive C Work, SPOR Networks in Chronic Disease) in which some outcomes for diverse patient population subgroups are emphasized and social determinants (ethnicity, income, occupation) are recognized (Canadian Institutes of Health Research & Social Sciences and Humanities Research Council, 2015). Problematically, however, these are reduced to social determinants of gender, rather than important factors in their own regard. The CIHR-IGH (2012) has also introduced on-line training modules. While they focus on sex and/or gender, there are a few places that additional ­factors are highlighted. For example, in the module “Sex and Gender in Primary Data Collection with Humans,” an important point is made that measuring and profiling participants on variables that interact with sex or gender will lead to better understanding of what works for whom and ­under which circumstances (CIHR-IGH, 2017). The module on “Sex and Gender in Biomedical ­Research” trains scholars about why it is important to think about biologically based “sex” characteristics in health research, with a focus on training application reviewers. While nominally about sex/gender, the attention to gender is almost non-existent with the exception of defining the terms sex and gender (CIHR-IGH, 2017). While such developments are promising, they are not systematic across funding agencies nor are they always consistently applied within agencies. Moreover, few agencies have actually developed specific guidance on how to operationalize an approach that properly contextualizes sex/gender within an intersectionality framework.

Recommended Paradigmatic Shifts for Funding Agencies and Scientific Journals Taking into account the research findings and shortcomings discussed above, we propose an alternative, more comprehensive, and arguably more accurate description of criteria and concomitant lines of interrogation that can be used by researchers, funding agencies, and peer-reviewed journals. In proposing such guidance, we draw on the inclusive approach of the NIH (e.g., NIH, 2001), the diversity-focused approach of ZonMw (e.g., ZonMw, 2020), recommendations of the International Committee of Medical Journal Editors (2018), and critical insights from academic literature (e.g., Hankivsky, 2012; Springer et al., 2012; Stronks et al., 2013) that clarify sex/gender and their interactions with other social locations and equity variables in health research contexts. A short time ago, Gahagan et al. (2015) raised the need for such focus, concluding that the importance of considering the overlapping and intersecting nature of other key modifiable determinants of health (e.g., income, housing) and non-modifiable determinants of health (e.g., genetics, race) has been less well recognized, integrated, and formalized into research funding processes and publication policies (p.140e). As laid out in box 9.4, we believe there are two central paradigmatic shifts, operationalized by six questions, that if adopted by journals and funding agencies, would fundamentally improve the quality of sex/gender and health research. Using these questions as guidance, we improve upon what currently exists within funding agencies and journals and, moreover, extend beyond the principles, guidelines, and checklists that we

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BOX 9.4 RECOMMENDATIONS FOR SEX/GENDER AND HEALTH RESEARCH Two paradigmatic shifts are needed to fundamentally improve the quality of sex/gender and health research: • Sex/gender should not only be recognized but also understood as intersecting with other axes of inequality such as race, ability, socioeconomic status, geographic location, sexual orientation, and age. • Gender should be conceptualized as a structural/social determinant of health and should accompany any investigation of “sex” differences – in other words, research should not assume or proceed with the idea that “sex” can be separated from gender. Six questions can help operationalize these paradigmatic shifts: 1 Does the study automatically give primacy to sex/gender? Does it move beyond asking whether sex/gender considerations are taken into account to explaining what relevant factors are taken into account to understand a particular illness, disease or health experience? 2 How does the study (biomedical, clinical, health systems, or population health focused) identify relevant factors that shape and determine health (e.g., ethnicity/race, sex/­ gender, age, socio-economic status, geographic location, sexual orientation)? What are the inclusion/exclusion criteria in relation to this question? 3 How does the research design (data collection and analysis) capture the relationships and interactions (e.g., using a multi-level analysis linking individual experiences to broader social structures) among pertinent health determinants and factors, including, but not limited to, sex/gender? Is the sample size adequate for capturing diversity between and within groups often treated in a homogeneous manner (e.g., women, men)? 4 Does the study conceptualize and/or model gender as a social/structural determinant of health? a If yes, how? b If no, has a strong rationale been provided for how/why a gender conceptualization is not needed—even if the researcher was not able to directly test the gender mechanism? 5 Does the study assert male/female differences in health related to biological mechanisms? a If yes, how are those biological mechanisms specifically explained and/or tested? Also, has it been explicitly described how gender and other intersecting factors are intertwined with these biological mechanisms? b If no, does the study specifically state/demonstrate that intersecting social ­processes can cause the same biological mechanisms leading to male/female ­differences in health?

Beyond Sex and Gender Differences in Funding and Reporting of Health Research

6 Where relevant, does the study contextualize research findings undertaken with human subjects within broader social structures and processes of power? Source: Authors. Originally published in Hankivsky, O., Springer, K. W., & Hunting, G. (2018). Beyond sex and gender difference in funding and reporting of health research. Research Integrity and Peer ­Review, 3, 6. https://doi.org/10.1186/s41073-018-0050-6..

detailed above and are considered best and promising practices in the field. Most importantly, these alternatives raise important considerations that are at the heart of understanding the complexities, interactions, and processes among different factors, structures, and processes inherent in how health inequities are created and sustained.

Limitations This study has a number of limitations. First, categories chosen to pinpoint health journals were broad in scope but may have excluded potentially relevant journals; sex and gender health journals were chosen based on title (see figure 9.1 for exclusion criteria details). Second, the research captured national-level government funded/public research funding agencies in North America, EU/ associated countries, and Australia (see figure 9.2 for exclusion criteria details), excluding those outside these geographic regions. Agencies analysed were limited to these regions as no relevant agencies beyond these regions were found via our search methodology, including recent agency reviews and an online search (see figure 9.2). Agencies were also excluded if information was not available in English. Further, our analysis was limited to information available within existing reports and websites; we did not investigate specific contexts to understand general trends that may be affecting the priorities of national research agencies nor did we conduct interviews with agency staff or journal editors. These would be important future steps to deeper understandings of the interworking, complex, and political nature of funding agencies and journals. Nevertheless, the findings capture important trends in relation to sex/gender and reveal significant limitations in how both key journals and funding agencies conceptualize and guide the production and dissemination of research.

CONCLUSION The findings of our study demonstrate that both funding agencies and scientific journals are not fulfilling their potential as change agents in terms of reflecting and advancing the most accurate and contemporary understandings of sex/gender, including how sex/gender interact with myriad other factors. Health research and reporting needs to better capture interlocking inequities and dimensions of difference, including socioeconomic status, race/ethnicity, sexual orientation, and geographic

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location, and in the process, decentre sex and gender as the preferred axes through which to frame all research. This does not mean that sex/and or gender cease to be relevant or significant, but rather that they should be interpreted within a more comprehensive framework, informed by intersectionality and prioritizing diversity. The paradigmatic shift and guiding questions we propose in this article are intended to contribute to this change. Such changes will need to be supported by further education, training, resources, and supports – similar to initial efforts that have brought attention to the importance of sex/gender in health research and reporting. However, aligning what is already known to be state-of-the-art knowledge to accurately position sex/gender is essential for continuing the process of improving scientific quality and rigour, improving efficiencies, reducing potential harm from incomplete evidence, and ultimately improving health for all.

DISCUSSION QUESTIONS 1 How might funding agencies and scientific journals enact their roles as change agents in terms of reflecting and advancing the most accurate and contemporary understandings of sex/gender, including how sex/gender interact with myriad other factors? 2 Why is it challenging to develop consistent language and approaches across ­international funding bodies and peer-reviewed journals? 3 What might be the resistance to taking up the six guiding questions laid out in this chapter for advancing intersectionality in health research funding and reporting?

NOTES 1 In this chapter, we use the term sex/gender throughout to represent the inextricable interconnected nature of ­biology (usually thought of as sex) and social environment/structures (usually thought of as gender). Importantly, we understand gender not as something people are, but rather as part of norms, interactions, and behaviours, as well as embedded in institutions, policies, and organizations. We refer to sex or gender or sex and/or gender to reference issues when they are used separately and when others specifically use these terms independently. 2 Male/female birthweight differences in Jordan is one example of seemingly “pure” sex-based differences that are very much affected by gender. Specifically, girl babies in Jordan (a country with a strong male child preference) have lower birthweight than boy babies, but this difference is in part due to the fact that mothers who know they are carrying a female fetus seek significantly less prenatal care than women who know they are carrying a male fetus (see Al-Akour, 2009; Al-Qutob et al., 2010). 3 Note: 2014 was the most recent database year available. 4 Health journals included the top five SSCI database journals (American Journal of Public Health, Health ­Affairs, Social Science & Medicine, Epidemiology, and Medical Care) and the top five SCIE database journals (New England Journal of Medicine, Lancet, Journal of the American Medical Association, B ­ ritish Medical Journal, and Cochrane Database of Systematic Reviews). Sex/gender focused health journals ­included the top 10 relevant journals from both databases (Journal of Women’s Health, Women’s Health Issues, Journal of Midwifery & Women’s Health, Gender Medicine: The Journal for the Study of Sex & Gender Differences (formerly Women’s Health & Gender-Based Medicine), BMC Women’s Health, Women & Health, American

Beyond Sex and Gender Differences in Funding and Reporting of Health Research Journal of Men’s Health, Health Care for Women International, Women & Birth, and Journal of Men’s Health (formerly known as the Journal of Men’s Health & Gender). 5 This website provides brief summaries of national, international, and private granting agency policies ­related to the integration of gender analysis in research. The information is continually updated. The ­information that we included in our analysis was from May 2016. 6 Key funding agencies included 45 agencies across 36 countries: Australian Research C ­ ouncil, ­National Health and Medical Research Council (Australia); Austrian Research Promotion Agency, ­Austrian Science Fund (Austria); Agency for Innovation by Science and Technology – in Flanders, the ­Research Foundation – Flanders (FWO), Fund for Scientific Research – FWO (Belgium); ­National ­S cience Fund (Bulgaria); Canadian Institutes of Health Research (CIHR) (Canada); Croatian Science ­Foundation (Croatia); Cyprus Research Promotion Foundation (­Cyprus); Czech Science ­Foundation (Czech ­Republic); the Danish Council for Independent Research (­Denmark); Estonian Research ­Council ­Estonia); the Academy of Finland (Finland); Centre ­national de la ­recherche ­scientifique, French ­National Research Agency (France); German Research ­Foundation; the National Council for ­Research and Technology (Greece); Hungarian Scientific Research Fund (Hungary); the Icelandic Centre for ­Research (Iceland); Irish Research Council, Science ­Foundation Ireland (­Ireland); Israel ­S cience ­Foundation (Israel); Ministry of Education, ­Universities and ­Research (Italy); Latvian Council of ­S cience (Latvia); Research Council of Lithuania ­(Lithuania); National Research Fund (­Luxembourg); Malta Council for Science and Technology (Malta); ­Netherlands ­Organization for Scientific ­Research, ­Netherlands Organization for Health ­Research and ­Development (Netherlands); Research ­Council of Norway (Norway); National ­Centre for ­Research & Development, National Science Centre (­Poland); Foundation for Science and ­Technology (­Portugal); Executive Agency for Higher Education and ­Research Funding (­Romania); Slovak ­Research and ­Development Agency (Slovakia); Slovenian ­Research Agency (­S lovenia); Secretary of State of Research, Development and Innovation (Spain); Swedish R ­ esearch Council (Sweden); Swiss National Science Foundation (Switzerland); Scientific and ­Technological Research Council of Turkey (Turkey); Research Councils UK , Medical Research Council (United Kingdom); and US National Institutes of Health (NIH) (United States). REFERENCES Ailshire, J. A., & House, J. S. (2011). The unequal burden of weight gain: An intersectional approach to understanding social disparities in BMI trajectories from 1986 to 2001/2002. Social forces, 90(2), 397–423. https://doi.org/10.1093/sf/sor001 Al-Akour N. (2009). Relationship between parental knowledge of fetal gender and newborns’ birthweight among Jordanian families. International Journal of Nursing Practice, 15(2), 105–111. https://doi.org /10.1111/j.1440-172X.2009.01734.x Al-Qutob, R., Mawajdeh, S., Allosh, R., Mehayer, H., & Majali, S. (2004). The effect of prenatal knowledge of fetal sex on birth weight: A study from Jordan. Health Care for Women International, 25(3), 281–291. https://doi.org/10.1080/07399330490272769 American Journal of Public Health. (2017). Instructions for authors. http://ajph.aphapublications.org/userimages /ContentEditor/1432646399120/authorinstruc tions.pdf Austrian Science Fund. (n.d.). Fix the knowledge with regard to gender in scientific research. https://www.fwf .ac.at/en/about-the-fwf/gender-issues/fix-the-knowledge/fix-the-knowledge-detail/ Bauer, G. R. (2014). Incorporating intersectionality theory into population health research methodology: Challenges and the potential to advance health equity. Social Science & Medicine, 110, 10–17. https://doi .org/10.1016/j.socscimed.2014.03.022 Blom, N., Huijts, T., & Kraaykamp, G. (2016). Ethnic health inequalities in Europe: The moderating and amplifying role of healthcare system characteristics. Social Science & Medicine, 158, 43–51. https://doi .org/10.1016/j.socscimed.2016.04.014

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CHAPTER TEN

Engaging Communities: Intersectional Participatory Action Research Marina Morrow, Colleen Reid, Ania Landy, Sabina Chatterjee, Wendy Frisby, Cindy Holmes, and Audrey Yap

In recent years the concept of community engagement has been taken up by government, the nonprofit sector, and the academy as a strategy for increasing relevance and social accountability and contributing to social change agendas. Yet fostering engagement towards social change is not a new phenomenon. Its predecessors, many of which have a long history, include citizen participation, public involvement, and community consultation. In the field of women’s health, the practice of community engagement has been used for decades to advance feminist agendas and has led to the emergence of research approaches and organizing practices driven by the principles of equitable participation and social change. In women’s health, there is a long history of using community engagement to promote movement goals and advance issues related to women’s health, women’s rights, and women’s sexuality. The uptake of feminist participatory action research (FPAR) and community-based research (CBR) was inspired by scholar activists wanting to ensure that their research was informed by collaborative models that could reflect the agendas and needs of communities in ways that traditional research paradigms failed to do. Along the way many different engagement models have emerged, with varying degrees of community input, involvement, and uptake. Scholars and activists working explicitly with intersectional research and activist paradigms are less common, although there is increasing recognition that women’s health research and the women’s health movement must respond to the realities of women’s lives and recognize the ways in which multiple forms of inequity based on race, ethnicity, gender, age, class, ability, sexuality, and geography intersect to structure women’s experiences of health and health care systems. As feminist researchers variously positioned in the academy, we, like others, have come to adopt FPAR frameworks with explicit activist agendas to engage with communities and foster progressive change. We argue that this work is often stymied or stunted by the way universities and funding bodies operating in neoliberal contexts define engagement. In this chapter we advance the concept of intersectional participatory action research (IPAR) as a research practice that explicitly adopts an intersectional theoretical framework that seeks to understand the complex and intersecting role of multiple oppressions and how these are structurally embedded in society. We argue that,

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despite the proliferation of terminology already crowding the field of CBR, this linguistic shift is crucial to move the field forward and to address the ways in which FPAR has tended to prioritize gender over other forms of oppression. To this end we use case studies, from scholar/activists who are using participatory approaches that incorporate the use of intersectionality, and then reflect on how these case studies illuminate the promises and challenges of IPAR.

BACKGROUND Historical Roots of Community-Based Research (CBR) and Feminist Participatory Action Research (FPAR) CBR and FPAR1 share close links with the concepts of citizen participation, community engagement, public participation, and community consultation. Although the somewhat distinct trajectories of these traditions are beyond the scope of this chapter, they all essentially derived from citizen participation and community engagement, which are broadly defined as the active engagement of community members to transform traditional roles and systems of power that influence their lives (Coghlan & Brydon-Miller, 2014). The theory and practice of citizen participation are rooted in the pioneering work of Paulo Freire on adult literacy among oppressed communities in Brazil, and Orlando Fals Borda’s (2006) work with peasant communities in Latin America (­Coghlan & Brydon-Miller, 2014; Fernández-Aballí Altamirano, 2016; Gutiérrez, 2016). Freire argued that members of ­disenfranchised communities can improve their situation by engaging in critical ­reflection and ­dialogue (a process he referred to as “conscientization”) and acting against oppressive systems (Freire, 1968). Similarly, Borda (2006) highlighted how linking local knowledge and ­social enquiry with community mobilization efforts could create positive social change (Coghlan & Brydon-Miller, 2014). Social movements of the 1970s, such as the women’s and civil rights movements, further advanced citizen rights issues and solidified the political role of citizen participation (Cahill, 2007; Coghlan & Brydon-Miller, 2014). These movements also proffered critiques of earlier models by exposing inequities between intellectuals and the subjects they sought to empower (Cahill, 2007; Sohng, 1996). The values of citizen participation serve as guiding principles of action-oriented approaches to research aimed at addressing social justice issues and creating social change at the community, organizational, or societal levels. These approaches include action research, participatory research, and participatory action research, among others. While these research traditions have different historical contexts, they respond to the dominant positivist view of the world (Brydon-Miller et al., 2003) and value organizational or social change, equal partnerships, democratic decision making, collaboration, and capacity building (Coghlan & Brydon-Miller, 2014). CBR arose in response to calls for research approaches that clarify and emphasize the role of community in research, including community needs, strengths, and contributions. CBR has roots in the traditions of action and participatory action research and has been developed and promoted by public health scholars in Canada and the United States (Guta et al., 2014; Minkler & Wallerstein, 2008). Feminist approaches, including FPAR, underscore the historical bias towards

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engagement with communities of men and their concerns over women and theirs. They also point to the importance of understanding structural forms of discrimination and oppression based on gender (Maguire, 1987) and intersectionality (Reid & Gillberg, 2014).

“Engaging the World:” The Co-optation of Community Engagement and CBR In the context of research, CBR and FPAR approaches are experiencing a revitalization. “Engagement” has become a trend across for-profit, non-profit, and government sectors, including health care and higher education. By virtue of their influence, human capital, research knowledge, and skills, universities are well positioned to act as anchors for community engagement. Moreover, ­colleges and universities are being pushed towards forms of community engagement by their need to remain relevant in the wake of declining public support and neoliberal economic trends and attendant funding models (i.e., increasingly private) and managerial structures. These ascendant structures also lead to increased demands for learning institutions to produce “good” neoliberal citizens who fit the requirements of the economy (Olssen & Peters, 2005) and steer away from challenging the status quo (Fernández-Aballí Altamirano, 2016). Thus, the language of engagement proliferates in university branding campaigns (such as Simon Fraser University’s “Engage the World” campaign), shapes requirements for community partnerships in federal grant applications, and drives a push for translational knowledge (Shultz & Kajner, 2013). On the one hand, it could be argued that this trend is indeed making the university more relevant to the communities it should serve, but on the other hand, it has also meant that in the rush to engage with communities, especially in the context of research, many of the foundational principles of community engagement as articulated in CBR and FPAR frameworks have been ignored or co-opted. What often result are forms of engagement that fit the needs of university agendas and research funding models rather than the authentic needs of communities. Indeed, the underlying neoliberal values of engagement trends within universities present significant challenges for communities, as universities play a key role in accessing research grants, and most of the research skills reside in universities. Accordingly, work needs to be done to support funding structures that prioritize community initiatives and ensure knowledge exchange between universities and communities. CBR, in these more recent manifestations, has been criticized on several fronts. These criticisms have come from the ways in which the concepts and ideas behind CBR have been interpreted in disciplines or locations that do not have deep experience with participatory methods or familiarity with the history of the development of CBR and its key debates. Researchers have noted that CBR changes as it “travels” into different disciplines and spaces (Guta et al., 2014), which can lead to its cooptation through, for example, demands by funders for researchers to work in community partnerships. In the context of their work in Indigenous communities, de Leeuw et al. (2012) saw frequent discrepancies between funding and institutional expectations to meet tight timelines, and researchers’ hopes of building long-term, meaningful relationships with communities. They questioned how these conflicting demands affect engagement. This speaks to the issue of the sustainability of relationships and partnerships in communities, which often deteriorate once academics have met their funding and professional requirements. The gap between theoretical values

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and real-world implementation of CBR projects can entrench the very oppressive structures and relationships that researchers are trying to undo. For example, there is a danger of relying solely on engagement of community members in research as the means to disturb the status quo, rather than working to ensure community perspectives are present throughout the research process (de Leeuw et al., 2012). Further, community engagement and the voices of research participants are often used in ways that disrespect people’s life stories. For example, community-based researchers writing in the context of mental health argue that the stories of people with lived experience of mental distress have often been used for organizational or marketing purposes by organizations (Costa et al., 2012; Voronka et al., 2014). These scholar-activists challenge researchers and practitioners to think about how narratives of lived experience are being “consumed” by audiences in ways that strip personal stories of mental health struggles of their social meaning. Some claim that community engagement initiatives and CBR located in the academy have become politically sanitized; that is, such engagement neglects a discussion of broader structural and political issues and the role of neoliberalism. This de-politicization undermines social justice agendas and communities themselves (Brackmann, 2015; Kliewer, 2013; Robinson, 2000), and ultimately inhibits scholars’ capacity to take on political agendas (Brackmann, 2015). If we hope to transform universities into “a source of social critique and progress” (­Robinson, 2000, p. 143), we must take these critiques seriously and ground community engagement a­ pproaches to research, including CBR and FPAR, in their theoretical and social justice orientations. While the context provided so far sets the stage for our discussion, arguably it also provides a rationale for the importance of taking a deep look at grassroots approaches rooted in feminist activism and intersectionality theory to guide social justice-oriented engagement research, such as the intersectional approach of IPAR that we are proposing here. IPAR is best positioned to speak back to the co-optation of community engagement frameworks in the context of the growing neoliberal trends in universities. Indeed, for CBR and FPAR initiatives to realize their goal of social change, they must not only examine broader socio-political issues but also embrace political activism itself. The role of scholar-activist has the potential to take on social justice agendas and contribute to transforming universities’ agendas.

FEMINISM’S CONTRIBUTIONS TO COMMUNITY-BASED RESEARCH Positioning women’s lived experiences at the centre of enquiry, FPAR merges central aspects of feminist theory and research with fundamental elements of participatory action research to transform research and practice and the relationship between the two (Reid & Gillberg, 2014). FPAR has a long history, beginning in the first wave of feminism and embedded in the activities of countless women. Reid and Gillberg (2014) asserted that: the praxis of FPAR goes much further back in time to the early pragmatists and feminist pragmatists such as Jane Addams, where the need for action and reciprocity, rather than charity and one-dimensional

Engaging Communities models of knowledge, were practiced in her Hull House community project and peace projects, for which she would be awarded the Nobel Peace Prize in 1931. Indeed, significant work in the spirit of

FPAR has been carried out in the USA and Europe by women for far longer than what is generally known. Class, race, ethnicity, religion, women’s issues, (illegal) immigration/migration, and global peace were taken into consideration and acted upon in social change projects in the USA, Europe and other parts of the world more than 100 years ago. (p. 343)

Despite this early history, FPAR did not become a widely used methodology until the ­second wave of feminism, when scholar-activists critiqued the dominance of the positivist paradigm in ­research and questioned why knowledge development often proceeded based on the perspectives and lives of men (e.g., Harding, 1986; Longino, 1989). These critiques extended to emerging ­participatory approaches in research (Maguire, 1987; McTaggart, 1991). Maguire (1987) argued that words such as “marginalized” or “oppressed” did not reflect women’s experiences and called for feminist approaches to participatory action research (PAR) (Coghlan & Brydon-Miller, 2014; Hall, 2005). Thus, critical feminist theory combined with PAR gave rise to FPAR (Maguire, 1987). Feminist scholars began to use community participatory methods and to write extensively and critically about their own work, with a focus on power dynamics and ethical approaches to community participation (e.g., Creese & Frisby, 2011; Ristock & Pennell, 1996). In response to calls to clarify the role of community participation in FPAR, Reid and Frisby (2007) developed guiding principles of FPAR. These principles included prioritizing gender, acknowledging women’s diverse voices and experiences, recognizing different forms of action and representation, exploring the role of intersectionality, and making a commitment to reflexivity (Frisby et al., 2009; Reid & Frisby, 2007). More recently, Reid and Gillberg (2014) have identified the four central concepts of FPAR – feminism, participation, action, and research – to guide new ways of community engagement and knowledge creation (Reid & Gillberg, 2014). According to Reid and Gillberg (2014), researchers who use FPAR need to be willing to expose their own faulty assumptions, adjust research processes, and shift existing power dynamics to create more inclusive, equitable, and action-oriented collaborations with community members. Critical questions, such as “for whom knowledge is generated, by whom, and for what purpose?” encourage those adopting a FPAR approach to seek community participation and to critically reflect on and adjust their processes (Reid & Gillberg, 2014). Today, FPAR researchers are increasingly taking up the concept of intersectionality to guide their participatory projects. The term intersectionality was first coined by Crenshaw (1989, 1991) in the 1980s in the context of critical feminist legal scholarship as a way of understanding intersecting and overlapping forms of oppression. This work, in turn, drew on the many Black and Indigenous US scholars who had challenged white feminists to more deeply explore racism in their theorizing of women’s oppression (Collins, 1990; hooks, 2000; Palacios, 2016; Smith, 1999). Intersectionality focuses on the intersections of social locations, interrogates what intersections tell us about power relations, and analyses how power is structured through systemic forms of oppression. In research, intersectionality allows for an ongoing critique of the research process and the outcomes of power relations (Dhamoon, 2010). Intersectionality has more recently been taken up as a theoretical and methodological framework for policy analysis and research in health and mental health (see Bauer, 2014; Hankivsky, 2014; Morrow & Malcoe, 2017; Rossiter & Morrow, 2011).

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Alongside intersectional approaches, feminists have adapted Indigenous and postcolonial theories to decolonize participatory research (Anderson et al., 2011; Brown et al., 2007; Clark, 2016; de Leeuw et al., 2012; Hunt & Holmes, 2015; Smith, 1999). These approaches centre the experiences of Indigenous and colonized peoples and create a space for the agency of disenfranchised people and subjugated knowledges (Anderson et al., 2011, p. 23). They pay attention to how social locations are structured by history and place, and call for researchers to “acknowledge intersectional oppression, to sustain critical reflexivity regarding their privilege, and to respond to a concern for representation” (Anderson et al., 2011, p. 23). Postcolonial approaches also problematize the notion of community, especially as this has been understood through feminist approaches that have tended to homogenize and essentialize (Anderson et al., 2011). As Anderson et al. (2011) put it, community is “a fluid social construct that has political, social, religious, and cultural relevance at different points in time” (p. 26). Some scholars and activists have critiqued the use of post-colonial frameworks, reacting to the idea that one can talk about a post-colonial period when colonialism is an ongoing structural ­determinant of health and a day-to-day reality for Indigenous and racialized peoples globally. These scholars argue for the use of decolonial approaches. While the post-colonial tradition ­addresses all colonized peoples historically, decolonial approaches centre the lives and experiences of Indigenous populations and work to redress the harms of colonialism in these contexts (Browne et al., 2007; de Leeuw et al., 2012; Hunt & Holmes, 2015; Smith, 1999). The use of multiple community engagement frameworks by feminist researchers has allowed for theoretical and methodological flexibility. However, as we demonstrate in the following sections, using intersectionality as FPAR’s analytic lens and methodology, that is, transforming FPAR to IPAR, best elucidates structural forms of power and how these operate in people’s daily lives to constrain emancipation and social justice. IPAR is thus best positioned to speak back to the cooptation of community engagement frameworks.

PRINCIPLES OF INTERSECTIONAL PARTICIPATORY ACTION RESEARCH Given the variety of labels that have been adopted to illustrate distinctions between different types of FPAR, an equally diverse number of ways exist with respect to how engagement is operationalized in research. In this section we outline the key principles of IPAR: lived experience, critical reflexivity, and social justice. These principles are aligned with intersectional theory and analysis (Carstensen-Egwuom, 2014; Collins & Bilge, 2016; Hancock, 2016; Hankivsky, 2012) and with earlier iterations of values and principles for FPAR (Frisby et al., 2009; Reid & Frisby, 2007; Reid & Gillberg, 2014). Distinctly and importantly, these IPAR principles must be enacted with the understanding that systems of oppression are overlapping and interconnected. Academics and community-based researchers/activists employing intersectionality believe that human experience cannot be explained through the lens of a single social category, such as gender, race, or socioeconomic status (Bowleg, 2012). Rather, they seek to reveal and understand the intersections of these categories, identities, structures, and systems of oppression and privilege that contribute to health

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inequities and poorer health outcomes (Hankivsky & Christoffersen, 2008). Building on and moving beyond understandings of FPAR that prioritized gender, IPAR recognizes that gender can never be understood separately from other forms of social hierarchy and privilege. In the current context of recent criticisms of CBR and FPAR and their cooptation by neoliberalist academic agendas, IPAR must pay explicit attention to researchers’ faulty assumptions and their willingness to shift research processes to create more inclusive, equitable, and action-oriented approaches (Reid & Gillberg, 2014). The principles of IPAR that we outline are best understood not as abstract values, but rather as practices that live in research and activism. They are meant to be continually enacted and reflected on. Lived experience is the first-hand account of living as a member of a particular community. Lived experience is significant both practically and epistemologically. The practice of using subaltern or disenfranchised knowledges to critically reflect on dominate social processes is key (e.g., Collins, 1990, 2004; Harding, 2004; hooks, 1994). Thus, central to understanding lived experience are the multiple and intersecting axes of privilege and oppression that intersectionality reveals, including gender, race/ethnicity, income, ability, age, gender identity, sexual orientation, migrant status, and so on (Collins & Bilge, 2016; Crenshaw, 1991; Hancock, 2016; Hankivsky, 2012). Attention to lived experience means including the leadership of communities at all stages of the research and grounding the research in the voices and experiences of people that the research represents and most impacts. Narratives of lived experience are embraced because they can interfere with larger powers and systems of oppression in which the project is embedded (Strand et al., 2003). In IPAR, researchers are meant to be particularly attentive to the intersections that communities themselves identify as significant for them. Critical reflexivity includes the values and practices of critical analysis, self-reflexivity and active participation, with the goal of highlighting dimensions of social power in the research process. In the context of intersectionality, “reflexivity includes continuous attention and reflection upon the social practices of positioning and differentiation in the field (including the positioning of the researcher), as well as analytic reflection upon the importance of academic knowledge and processes for social and political struggles” (Carstensen-Egwuom, 2014, p. 265). Critical reflexivity as it is enacted in IPAR has the potential to reveal the complex relations of power that shape the production of knowledge. Critical reflexivity must be practised throughout the research process to continually critically reflect on power relations and accomplish social good (Costa & Leong, 2012). The practice of critical reflexivity in the context of intersectionality can often lead to changes or adaptations in the research process as it unfolds, as researchers and community members strive to make evident both power and privilege. Social justice involves a commitment to addressing inequitable power relations. Like Josewski (2017), writing in the context of mental health, we think a critical relational conception of social justice is most compatible with intersectionality approaches. In practice, this means understanding that intersections between social identity categories reveal important information about systems of power, such as poverty, sexism, racism, ableism, and heterosexism. Accordingly, “intersectionality contributes to the understanding that redressing of inequities in mental health requires ­multi-factorial and multi-level strategies along the lines of (re)distribution, recognition and parity of participation” ( Josewski, 2017, p. 77). Social justice can and should be enacted on multiple

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levels – the individual, the community, and systemic or societal levels – and it should include a variety of tactics and approaches. This can include changes to practices and systems, as well as adaptations to the research process itself, to better enable opportunities for communities to engage in counter-hegemonic practices and counter-conduct (Guta et al., 2014; Janes, 2016). It can also include the formation of new alliances and coalitions to work for change. Drawing on these principles, the case studies we explore below represent three different participatory approaches that incorporate intersectionality in ways that deepen our understanding of how to actualize the principles of IPAR.

CASE STUDIES antidote: Multiracial and Indigenous Girls and Women’s Network Sabina Chatterjee & Audrey Yap In our first case study, Sabina and Audrey explore what they learned from their project Critical Thinking Inside and Outside the Academy, which focused on outreach training for young racialized and/or Indigenous women. In their writing they weave together reflections by two of the project participants and co-creators, Kaymi and Carissa, as a way of foregrounding their voices and experiences. In 2013 we received a grant2 for a community-based project called Critical Thinking Inside and Outside the Academy to fund outreach training for racialized and/or Indigenous young women.3 The purpose of the grant was to provide facilitation training for young women who had recently completed (or were about to complete) high school and to create and facilitate workshops on critical thinking from a social justice perspective. It was our hope that, by building on the participants’ lived experience as racialized young women, the project would increase their critical thinking and group facilitation skills. The school-based workshops would be geared towards other high school students and would mainly consist of facilitated discussions about critical thinking and bias. We believed that it was important to provide the opportunity for young women whose lives hold the complexities of racialization, gender, sexual orientation, disability, and other marginalizations to explore what critical thinking meant to them. Having both been involved in antidote,4 we felt that a campus/community research project rooted in social justice could encourage young racialized and Indigenous women to gain confidence to engage in critical thinking leadership roles. KAYMI – Mentorship between women of colour is a vital part of surviving in this world! To be under the guidance of people that know what it is like to move through the world as women of colour was extremely valuable.

CARISSA – Being that I’m a woman of colour myself, I think it was nice to have representation of other women of colour co-facilitating the project, because it can be easier to discuss topics such as “race” and all that it encompasses with individuals who are similar to ourselves and who might have a better understanding of our experiences.

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As researchers, we were mindful of our own social locations as we built the foundation of this project. This stance of critical reflexivity was one that we discussed among ourselves when we planned the project’s timeline, allowing enough flexibility to ensure that we did not impose too much of our own agendas on the participants. To remain conscious of the power differences between us, and also between us and the participants, we created processes through which any conflict or disagreements could be addressed using narrative and anti-oppressive dispute resolution story-sharing methods (LeBaron & Pillay, 2006; Turner & Moosa-Mitha, 2005; Winslade & Monk, 2000). The need to conform to funding requirements shaped some of our methodological approach, since we needed to ensure that our final report for the funding agency showed that we met the goals and deliverables. Nevertheless, we wanted to approach our project as fundamentally collaborative, mitigating potentially silencing power differentials between researchers and between researcher(s) and participants. Participants shaped the project’s development: we collaboratively created a name (Truth Tellers and Trouble Makers), a skills-building and workshop development schedule, and an implementation plan. The project participants planned and facilitated highschool-based workshops. The feedback we received from the students and their teachers was extremely positive, and there was a great deal of interest in follow-up sessions. KAYMI – Since participating in this project, I have become more and more comfortable with workshop facilitation and creation. I think that Truth Tellers and Trouble Makers played a key role in how I

became interested in facilitating and creating anti-oppressive and intersectional workshops with the intent of educating and engaging youth in difficult and important topics.

While these workshops were the main funding-based outcomes of the project, the less tangible impacts, such as the relationships we built with each other, were much more significant for all of us. Our discussions connected with many parts of our lives, as we were able to weave together stories of struggle and celebration as women of colour. Many of us were also survivors of violence and sexual abuse, identified as queer, and navigated health-related complexities. Story-sharing was an integral part of our critical thinking skills building, as we explored how critical thinking is a part of survival for multiply-minoritized people. Another intention with this project was to trouble what mainstream research language, such as “knowledge mobilization” and even “research,” means and how these terms are understood in community. Rather than “teaching” participants to use academic terms, the (ongoing) relationships and discussions proved far more impactful for us. KAYMI – As a queer mixed-race woman of colour, this was a space where I felt comfortable to learn

and explore with other folks who value intersectional understandings of our lives. I feel that all of

the different ways each of us brought our own lived experiences of marginalization and oppression

made a difference in how we engaged with each other, the work we were doing, and the participants in our workshops.

We wanted to avoid a perspective on research that privileged our knowledge, which would imply treating the participants as objects of knowledge rather than as knowledge holders and producers with whom we could build a reciprocal relationship. Relationships and social roles were in fact

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at the centre of our thinking about this project. After all, even our appropriation of the term critical thinking felt like an attempt to reclaim a concept that we, as women of colour, are often denied as a result of social stigmas. Therefore, placing women and girls of colour at the front of the classroom, positioned as educators, constituted an important statement. It was also important for us to ensure that the participants had a significant amount of input into the ways they learned, as well as how they planned and delivered the workshops. This enabled us to provide embodied counterexamples to the lack of rationality and over-reliance on emotion so often attributed to women. Women of colour, in particular, do not always conform to social stereotypes of critical thinkers, since traditional frameworks of critical thinking have been created primarily within white patriarchal settings, into which our stories do not easily fit. Fortunately, however, the increasing visibility of research on implicit bias and the extent to which stereotypes shape our thinking is making it easier to find a language with which we can communicate our experiences as critical thinkers to those who occupy different social positions. Our project was intentionally intersectional, but this was likely inevitable as a result of who we all are in the first place, each occupying a variety of social roles related to our gender identity, race, disability status, sexual orientation, and so on. KAYMI – The work we did was intersectional. If the project had been created through a mainstream

organization, I think we might have lost the ways in which we were able to make all of the decisions collaboratively. The intimate settings where we spent time working together (meetings at people’s

homes, knitting while talking, cozy coffee shops, etc.), allowed for our work together to progress in ways that might not have been possible in a mainstream organization.

CARISSA – I’ve definitely become more aware of my own thoughts and bias that I might be holding.

I’ve also been more conscious of the fact that everybody is their own individual with their own life struggles, and it helps to try to see things from their perspective sometimes.

Because many of the project participants had been a part of previous antidote projects, there was already an understanding of the value and rarity of having a space in which young racialized and queer women could talk openly about the struggles they faced in other institutional settings. This meant that we had established an antecedent relationship of trust in which disagreements and misunderstanding would be a source of growth rather than struggle. The narrative mediation approach to dispute resolution that we used enabled us to incorporate conflict more seamlessly into the learning process. These methods allowed conflict or disagreement to be articulated in ways that permitted them to be heard and honoured rather than resisted. During the workshops, there were times at which students who were participating challenged the project participants in their role as workshop leaders – this was especially true of students who were not used to having to reflect on their own privilege and felt uncomfortable with being decentred within the discussions. The use of relational mediation methods allowed the project participants to navigate these situations and also helped us to support participants both during and after the event took place. This collaborative project has deeply impacted how both of us teach, strengthening our own articulations of critical thinking. Additionally, the project has provided important insights into the role FPAR can play in bringing young women of colour together to engage in resistive practices that have social justice aims with respect to challenging racism and sexism.

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The Immigrant Women’s Health and Wellness Project Wendy Frisby In the second case study, Wendy Frisby describes the experiences of immigrant women in a health and wellness project developed by a large public recreation department in Canada. The project has since been honoured with a provincial award of excellence. While the project was designed for all immigrants, the focus was on immigrant women because previous research has shown they participate less in physical activity than male immigrants and non-immigrants, and suffer more from the “healthy immigrant effect,” whereby their health status tends to decline upon immigration (Lee, 2005; Tremblay et al., 2006). In terms of the context for the case study, public recreation has a long history in Canada and has, at times, used a community-development approach to encourage engagement through consultation with diverse citizens to determine what types of programs would best suit their needs and interests (Sharpe at al., 2016). However, a shift from a social welfare to a neoliberal ideology in local government has resulted in the offering of more recreation programs developed directly by professional staff to maximize efficiencies and bolster revenues, often with little or no input from community members (Frisby et al., 2010). The purpose of our case study was to examine the lived experiences of women to determine if and how migration and participation in the Health and Wellness Project affected their physical and mental health, and to obtain staff perspectives on how the project was working. In addition to recognizing that social categories of difference are complex, fluid, and flexible, intersectionality theory focuses on the power dynamics that underpin social practices and institutional arrangements (Davis, 2008). This is why we wanted to examine both the women’s experiences and how community recreation was being offered. We interviewed 30 women from 10 different countries in the language they preferred, who had immigrated to Canada within the last five years. We also interviewed 10 managers and staff who were involved in the development or implementation of the project. Our research team consisted of me and five multilingual graduate students so that we could engage non-English-speaking immigrant women who spoke Farsi, Korean, Mandarin, and Cantonese. While this was a strength of the case study design, a major limitation was that the experiences of women who spoke other languages or who lived in the community but had not participated in the Health and Wellness Project were not captured. We learned from managers and staff that the Health and Wellness Project was not a new program per se, because no investments had been made in terms of additional recreation activities or resources. Rather, based on their experience working with immigrants, staff made some operational changes designed to increase newcomer participation in existing recreational programs. The components of the project that staff thought were exemplary and that led to the provincial award of excellence included translating marketing materials into eight different languages based on the demographics of the community and using a one-on-one leisure counselling approach, where one staff member (who was an immigrant herself ) met with newcomers and directed them into activities based on their interests. In addition, staff developed partnerships with a multicultural service group and other organizations where they made outreach presentations to encouraged newcomer participation (Forde et al., 2015).

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While the project received provincial recognition for paying attention to immigrants, including women, we have argued elsewhere (Forde et al., 2015) that an assimilationist approach was adopted, whereby women new to Canada were encouraged to participate in traditional recreation activities already offered by the department. Our research showed that engagement could have been better fostered by finding ways to involve women in recreation program planning and delivery using a community-development approach. For example, several women described recreational activities they enjoyed in their home countries, and some expressed interest in teaching these activities to others in the community, but they found no opportunities to do so within the existing structure. At the same time, it is important to consider that this type of involvement would have been too onerous for some of the women, who had encountered numerous difficulties since arriving in Canada. While we do not claim that all elements of our study were participatory (for example, the ­research team determined the study’s purpose when applying for funding), we did adopt several principles of FPAR (Reid & Frisby, 2007). In addition, following Vissandjee et al. (2007), we considered both immigration and gender to be social determinants of health, and our findings illustrated how these determinants intersected with social class, race, age, marital and family situation, employability, and other factors to influence the stressfulness of the migration process, along with barriers and benefits of participating in the Health and Wellness Project (Lee et al., 2014). For example, immigrant women who spoke English and who were able to find employment shortly after moving to Canada did not experience declines in their physical and mental health and found it easier to afford community programs. In contrast, non-English speakers who encountered marital and financial difficulties experienced high levels of stress, depression and social isolation (Lee et al., 2014). Several of the women were concerned about their children’s integration into a new society and therefore prioritized their children’s participation in community activities over their own. It became very clear that a one-size-fits-all Health and Wellness Project was not going to be equally beneficial to all the women who had recently moved into the same community from different countries, as they differed in so many other ways. Thus, elements of intersectionality supported our FPAR approach and helped to unpack gender-blind and stereotypical assumptions underpinning the label immigrant. Participatory and action research elements were combined through a series of meetings with the immigrant women following data collection to determine how to best communicate the findings and recommendations to managers and staff along with community partners. Five of the women ultimately felt comfortable enough to co-present the findings and recommendations with the research team during a three-hour workshop. Two of the women were fluent in English, one wanted to practise her English-speaking skills, and two others asked for translation assistance from the graduate students. The women offered three main recommendations (Lee et al., 2014). The first was that the recreation department should create opportunities for leadership among newcomers as staff, volunteers, or advisers within the department and partnering organizations, in part because the women’s previous experiences and credentials were not being recognized, making it very difficult for many to find employment. In addition, the women had valuable input to provide on how programs could be diversified, delivered, and marketed to better meet their needs. Second was to create integrated programs that better address the complex issues diverse immigrant women face, such as financial instability, declining mental health, social isolation, and unfamiliarity with Euro-Canadian customs. Third was to facilitate meaningful social relationships both within and outside of

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newcomers’ ethno-linguistic groups. The women saw this last recommendation as especially crucial to their settlement and health – more important than participation in recreational activities in and of themselves (Lee et al., 2014). This illustrates how crucial it is to consider whose voices are being heard when deciding on meanings and practices of social change. While the health program staff and researchers may have good intentions, they will miss the mark if they do not have discussions with immigrant women about what social change means to them in the context of their daily lives. While this dialogic approach to research had the potential to promote inclusion and social change if the managers, staff, and community partners acted upon the immigrant women’s recommendations, it also raised concerns about how power relations operated. For example, in our meetings, expectations had been raised among the women that improvements to the Health and Wellness Project would be implemented, in part because some assumed that the combination of hearing from community members and the research team would have an impact. However, project leaders were ultimately accountable to the director of the recreation department, who was responsible for hundreds of programs and dozens of recreation facilities. In addition, the recreation department director reported to local politicians on city council, who in turn were responsible for dozens of other municipal services during a time of budget cutbacks. Many of the immigrant women were unfamiliar with community structures and how the underlying power relations operated, and some assumed that our research team had more power to influence change than we actually did. We did our best to explain why we could not guarantee that the recommendations would be implemented, even though workshop attendees appeared to be supportive. At the same time, bringing the women’s recommendations forward to those who had power in the community was an important step in the action process. Another issue that required critical reflexivity was that our funding for the case study did not include tracking whether change actually occurred following the workshop. As the research team moved onto other projects, it felt like we were abandoning the immigrant women who had contributed so much of their time and knowledge to the case study, along with the staff who had championed the Health and Wellness Project. In the future, we plan to consider how the action phase of FPAR projects could be better assessed and budgeted for. Nonetheless, we found that by incorporating some elements of intersectionality into our FPAR approach, we were able to move beyond simplistic assumptions that ignore or essentialize immigrant women by developing more nuanced understandings of the factors affecting their health following immigration, and understanding the role that community health and wellness programs can play in easing their settlement.

The Trans,Two-Spirit, and Gender Nonconforming Community Safety and Wellbeing Photovoice Project Cindy Holmes In our final case study, Cindy Holmes discusses a community-based photovoice project called The Trans, Two-Spirit, and Gender Nonconforming Community Safety and Wellbeing Photovoice Project. Community engagement for social change is a central goal in the community-based participatory action research project I have been coordinating with a diverse team of 11 community

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collaborators on the ancestral and unceded Coast Salish territories of the Musqueam, Squamish, and Tsleil-Waututh people in Vancouver, BC.5 In this study, we have been examining connections between safety, belonging, well-being, and place in the lives of trans, Two-Spirit, and gender nonconforming (T2SGNC) people. This project was developed and conducted in collaboration with T2SGNC community members to address community health concerns and identify strategies for action. The purpose was to (a) understand the intersections between violence, safety, well-being, belonging, and place; (b) highlight resiliency; and (c) nurture community empowerment and strategies for social change. The research grew from my personal experience as a loved one of trans and gender nonconforming people, and a long history of working as a community advocate and educator in lesbian, gay, bisexual, trans, queer, and Two-Spirit anti-violence and health movements. Yet as a white, queer, cisgender academic, my research praxis has necessarily required a commitment to ongoing critical self-reflexivity about power relations, accountability, and practices of allyship. We used photovoice, a PAR method that combines photography, storytelling, and social action (Wang & Burris, 1997). Co-researchers took photos to document the realities of their lives and then shared a story about the photo, which they then circulated among other co-researchers in a group. Afterwards, the group chose to share their research for social change through photo exhibits, community presentations, and conferences for the purpose of social change. Our team developed these framing questions to guide co-researchers when taking photos: (a) What makes a place feel safe and that I belong? (b) What does well-being look like to me? and (c) What needs to change to create more safety, belonging, and well-being for trans, Two-Spirit, and gender nonconforming people in our community? Co-researchers could also share images and reflections of places or ­experiences that represent the absence of safety, belonging, and well-being. Our research approach was informed by critical trans, intersectional, decolonial ,and Indigenous theories, methodologies, and social movements (Holmes, 2016; Hunt, 2015; Smith, 1999; Spade, 2011; Taylor & Ristock, 2011; Travers et al., 2013; Tuck & Guishard, 2013; White & Goldberg, 2006) that foreground analyses of interlocking systems of oppression, Indigenous knowledges, and a commitment to reciprocity and accountability (Holmes, 2016).6 We also attempted to move beyond community engagement to community control and ownership of the research (Schnarch, 2004; Travers et al., 2013). An extended community-engagement phase was implemented early on to deepen community ownership of the project and build a diverse community advisory group. This process highlighted the need for clear guidelines to implement anti-racist strategies in the research design, for example, following OCAP (ownership, control, access, and possession) principles (Schnarch 2004), to prioritize selection of T2SGNC co-researchers who experience multiple forms of marginalization, and to have a majority of co-researchers who are Indigenous and people of colour. As well, in dialogue with people of colour and Indigenous advisory committee members and co-researchers, we implemented various decolonial principles and practices including centring Indigenous team members’ knowledge; including the word Two-Spirit in all project materials, rather than subsuming it under the umbrella of trans; acknowledging unceded Indigenous territories in all gatherings and publications; engaging Two-Spirit knowledge keepers and activists to lead ceremonies at all research meetings; offering gifts and tobacco to Indigenous knowledge keepers and elders; recognizing the

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importance of feasting for community-building and health; and critically examining connections between colonialism, racism, transphobia, and heterosexism, and how non-Western and Indigenous knowledge about gender and health has often been systemically erased from view through the violence of colonialism (Hunt, 2015). Our implementation of these practices also included fostering separate knowledge-sharing initiatives led by Indigenous team members to highlight the stories and photos of Indigenous trans and Two-Spirit people. In some cases, this was in response to an invitation or call for Indigenous presentations, but in other cases, we created opportunities to promote our Indigenous team members’ work.7 Ensuring meaningful and accessible participation has also meant responding to the everyday realities of poverty and systemic discrimination in housing and employment. For example, we decided to narrow the scope of the project and reallocate funds to increase both the cash honoraria for co-researchers and the project’s food budget for feasting. It also meant challenging classist and colonial assumptions about who has access to phones, computers, stable and safe housing, food, and transportation by, for example, asking co-researchers which modes of communication would work best for them and providing transit tickets, meals, and cash honoraria. A commitment to practices of allyship and decolonization in community engaged research also requires “straddling two worlds: research ‘versus’ community development” but this is not always easy or clear (Travers et al., 2013, p. 417). At times, this meant helping people connect with resources for their health and well-being, including employment, housing, culturally safe health care, and counselling, and providing advocacy on refugee and immigration issues. Decolonial and intersectional trans research methodologies must honour and support healing for those who have survived intergenerational colonial, transphobic, and hetero-patriarchal violence, including the violence of land theft, residential schools, the Sixties Scoop, racist police violence, violence experienced by refugees in their home countries, and racist violence in Canada. This requires an understanding of violence-informed community-engaged research, yet sustaining this work means having sufficient resources to support all researchers in the project, which may be challenging and may not always be feasible. Standard research ethics guidelines do not adequately address the many complexities for decolonial and intersectional ethical community engagement, and further work is needed to expand our theories and practices for decolonial, intersectional, queer, and trans community-engaged research. The development of guidelines or policies for conflict resolution are not always part of the terms of reference in participatory action research projects, and these should be created collaboratively during the early research design phase in all community-engaged research projects. These should be informed by decolonial and intersectional politics and combined with clear anti-racism and equity policies. As many scholars have noted, doing this work well requires more financial resources and time than most traditional research methodologies, and this must be addressed early on with clear parameters about what level of engagement and control is feasible and ethically wise. While intentions and principles may be clear, “questions remain about who is really in control of the agenda in community-based participatory research” (Travers et al., 2013, p. 2). Despite our intentions to have the research be community controlled, we also need to declare our different stakes and interests in the research rather than hiding these power differentials and agendas.

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CASE STUDY REFLECTIONS The case studies above illustrate how feminist researchers are embracing intersectional approaches and are providing nuanced accounts of how power is manifest in social and structural arrangements and how these manifestations constrain women’s lives but also inspire resistance and social activism. Each of the researchers described how they responded to neoliberal constraints, whether these were the inspiration for the research (cutbacks and social policy changes) or placed restrictions on the research itself through funding requirements and demands. Here we summarize some of the key themes and principles that the case studies used, with a view towards illustrating what IPAR practices look like as animated in different communities and locales. Each of the case studies used intersectionality to surface the ways in which women’s diverse social positioning shaped their experiences and access to resources and knowledge production. In the antidote case study, intersectionality was embodied in the multiple identities and social locations (race, ethnicity, gender, sexual orientation, migration, and ability) that the researchers and participants brought to the project. Intersectionality in this instance revealed the multiple ways multiracial and Indigenous girls thought about social justice and how this thinking could be harnessed to develop workshops on critical thinking. Here intersectionality was used to redefine the meaning and uses of critical thinking from the perspective of multi-racial and Indigenous girls. In the Immigrant Women’s Health and Wellness Project, the research illustrated that understanding multiple experiences of “immigration” shaped experiences of “settlement” and engagement in community. This meant unpacking intersectional social locations related to gender, immigration status, socioeconomic status, and education. Intersectionality in this instance also revealed the role of social connection in experiences of health and inclusion for new immigrant women. Placing the lived experience of ­immigrant women at the centre of analysis forced the researchers to re-examine their project objectives. In the case of the Community Safety and Wellbeing Photovoice project, an intersectional, ­decolonial methodology was used in collaboration with trans and Two-Spirit community members to surface the meanings and processes of colonialism, racialization, and whiteness, and the interlocking nature of multiple forms of domination in the context of trans peoples’ lives. Specifically, the adoption of intersectionality allowed the participants to explore their own experiences of safety and well-being and to challenge harmful practices in gender and health research. Central to all of the case studies was the foregrounding of lived experience of the research participants as a way to reveal intersectional forms of power and oppression. In antidote, the young multi-racial and Indigenous girls helped to redefine critical thinking and were active in developing and delivering the workshops on critical thinking that were subsequently given in some high schools. In the Immigrant Women’s Health and Wellness Project, researchers were hoping to identify promising social inclusion practices to increase health promoting activities for women. Their willingness to listen to the critiques of the women who participated in the project allowed the researchers to identify weaknesses in the project and to better understand the women’s own experiences and ideas about what social change meant to them vis-à-vis their own health. From this came the recognition that women’s involvement in the wellness project was really a route for them towards becoming engaged in their new communities and in settings where they could meet new people and obtain employment. In the Community Safety and Wellbeing Photovoice

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project the participants were not only directly involved in carrying out the research but also shared ­decision-making processes and mechanisms for community ownership of the process and products. The aim was to place decolonial methodologies, analyses of intersecting systems of oppression, and a commitment to reciprocity and accountability at the heart of the research. A critical component of intersectional approaches is the recognition of one’s own social location vis-à-vis the communities with which one is working. However, beyond recognition is the need for a critical reflexivity that demands an ongoing process of interrogating the operation of power in the research process. Critical reflexivity is central to IPAR because unexamined participatory research can result in further marginalization of disenfranchised communities (Guta et al., 2013; Horowitz et al., 2009). In the antidote project, the researchers discussed how they were mindful of their social locations and used narrative and anti-oppressive dispute resolution methods in their process. In the Immigrant Women’s Health and Wellness Project, engaging in ongoing critical reflexivity allowed the researchers to gain important insights into how new immigrant women experience health and inclusion, and how dominant notions of social inclusion do not reflect the needs of new immigrant women. In the Community Safety and Wellbeing Photovoice project, the researcher explicitly acknowledged her position as a white, queer, cisgender academic and how, for her, a commitment to critical reflexivity meant an openness to criticism, accountability, and the practice of allyship. True to IPAR, all of the case studies were motivated by the desire to make positive social change, and specifically to redress historical injustices in the communities with which the researchers worked. The antidote project was designed to rethink how young racialized women are seen as critical thinkers and to challenge and transform power relations in the classroom. In this instance adopting intersectional FPAR countered racialized and gendered stereotypes about who can be a critical thinker. In the case of the Immigrant Women’s Health and Wellness Project, the original social justice goal was to help recent immigrant women connect to recreational facilities in their new communities, yet through the research process the women challenged this aim and put forward their own social justice goal as a broader one of wanting to increase their social engagement more generally. Finally, in the Community Safety and Wellbeing Photovoice project, participants helped shape the social justice goals around the specific lived experiences of trans and Two-Spirit people with respect to wellness, safety, and a sense of belonging. In all of the case studies a commitment to intersectionality helped to centre the lived experiences of the communities that were involved and allowed for a better understanding of people’s lives that then led to more concrete and meaningful social justice aims. Underpinning this was the commitment to critical reflexivity, which allowed for a deeper level of enquiry to occur that surfaced flaws in the research process. These flaws were taken seriously – that is, researchers demonstrated humility, admitted to not knowing, let go of being an expert, and, in that process, allowed for a better understanding of and engagement of power differences.

IMPLICATIONS AND CONCLUSION Mindful of de Leeuw et al.’s (2012) caution that participatory methods are not appropriate in all situations, and especially that normalizing participatory research as a best practice might discourage critical examination, we suggest that the explicit adoption of IPAR frameworks

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that adhere to the key principles and practices of foregrounding lived experience, engaging in critical reflexivity, and maintaining the goals of social change for social justice is necessary to preserve the feminist/activist history of FPAR and to build on and develop better and more nuanced IPAR practices. These principles and practices are intended to be documented, shared, and added to; they are not fixed understandings but rather emergent, iterative, and responsive. As a community of intersectional participatory action researchers, we hope to foster an ongoing conversation about these practices, how they look in different contexts, and how they must be adjusted or changed to be responsive to contextual changes and challenges. Indeed, this is particularly important in the context of neoliberal university agendas and funding bodies, which are increasingly putting emphasis on engagement with communities as a way of justifying the relevance of research in the context of decreased public funding and increased market control over the enterprise of knowledge production. This emphasis has increased the use of participatory methods, but often without ethical attention to the needs and concerns of communities, and without the resources and academic incentives to build meaningful and lasting relationships. To this end we leave you with the following questions for continued exploration and discussion: • If engaging in IPAR, do you have ○ a clear understanding of the lived experience of the communities in which you’re working? ○ the necessary resources to support the meaningful and sustained involvement of people? ○ strategies in place to sustain the critical reflexivity of the research team? ○ a clear understanding of the social justice and change goals of the communities involved? ○ enough experience and humility to be responsive to community needs and changes in the research process?

DISCUSSION QUESTIONS 1 As discussed in the chapter, CBR and FPAR approaches are experiencing a revitalization, while at the same time these methods are being co-opted in ways that water down their intent. What do you think are some of the biggest threats to CBR and FPAR approaches? 2 CBR and FPAR rely on building close relationships between academics and community members. Often, these relationships are built through activities carried out in person. How do you think the COVID-19 pandemic is changing CBR and FPAR research? Is it still possible to develop the relationships needed to carry out participatory research? How can the application of intersectionality help us better understand forms of privilege/disadvantage as they are playing out in the pandemic and the use of CBR (e.g., access to technology, ability to physically distance).

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3 What have been the key contributions of feminists to the landscape of CBR? What have been the key contributions of community-based researchers to feminist research? 4 The authors argue for the need to more explicitly incorporate the use of intersectionality into community-based participatory research. What do you think are the key promises and challenges of IPAR? In your discussion consider a current case study such as the Black Lives Matter movement. 5 In the chapter several case studies of IPAR research are presented. Choose one case study and discuss the three key insights you find useful.

NOTES 1 We recognize the multiplicity of ways that scholars and community researchers name their research approaches. We identify CBR as an umbrella term for research frameworks, including action research, participatory action research, participatory research, collaborative research, and so on. Similarly, we position FPAR as an umbrella term for CBR approaches that pay explicit attention to gender and, in some instances, to gender’s intersections with other forms of oppression. 2 The project we describe was funded through a Social Sciences and Humanities Research Council (SSHRC) grant. 3 Please note that our project welcomed people who identified as women in a way that was significant for them (including trans women, genderqueer women, cis women, and non-binary people). 4 antidote is a network of multiracial girls and women based in Victoria, BC. It is volunteer-run and based on principles of grassroots community organization. 5 The research was funded through a three-year Michael Smith Foundation for Health Research Postdoctoral Fellowship in the Faculty of Health Sciences at Simon Fraser University. The co-researchers are Daniel, Bon Fabian, Abby Hipolito, Liz “Raven” James, Wade Janzen, Sandy Lambert, Cherese Reemaul, Velvet Steele, Ann Travers, Stefan de Villiers, and Chase Willier. More than 15 community advisory group members initially guided the development of the project, and a group of five advisory members remain involved: James Kelly, Kimberly Nixon, Kyle Shaughnessy, Chase Willier, and Caroline White. 6 While T2SGNC communities have often been erased in knowledge production and generally understudied, research that has included these communities has frequently been unethical – for example, collecting data without consent, neglecting to report research findings back to communities, and failing to disseminate the research in meaningful ways that are useful for communities (Bauer et al., 2009; Hunt, 2015; Travers et al., 2013). As well, cisnormativity, transphobia, racism, and white settler colonialism have been pervasive problems within feminist studies and social movements, despite the long-standing leadership of trans and anti-racist scholars and activists within these spaces. For these reasons, FPAR is not a term that I use for this research project or our methodology. Decolonial and intersectional feminism and critical trans theories inform our work, and I would describe our approach to CBPR in this project as decolonial (DPAR) and intersectional (IPAR). 7 This included Two-Spirit presentations for the Native American and Indigenous Studies Association, the Indigenous Speakers Series at Simon Fraser University, and the Canadian Professional Association of Transgender Health. Additionally, the full team of co-researchers shared their photos and stories at numerous municipal, provincial, and national conferences and photo exhibits to educate community members, students, health care and social service providers, academic researchers, and policymakers.

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CHAPTER ELEVEN

Intersectionality-Based Quantitative Health Research and Sex/Gender Sensitivity: A Scoping Review Emily Mena and Gabriele Bolte, on behalf of the ADVANCE GENDER Study Group

INTRODUCTION Social epidemiologists put particular emphasis on the effects of socio-structural factors, such as gender inequality, on states of health (Berkman & Kawachi, 2000) and are often motivated by the purpose of contributing to solving problems rooted in social injustice (O’Campo & Dunn, 2012). This stance is well reflected in applied epidemiology, which has a long-established tradition of generating evidence to advance positive social change (O’Campo & Dunn, 2012). The development and implementation of policies that are based upon robust results from intersectionality-informed and gender-sensitive quantitative data analyses could strengthen women’s health and gender equality. It may therefore not seem surprising that the implementation of a theoretical intersectionality framework into quantitative data analyses is gaining popularity in health research (Bauer, 2014; Bauer et al., 2019; Evans, 2019; Fisk, 2018; Merlo, 2003; Seng et al., 2012). Beyond that, bridging the gap between research and policies might also be encouraged by embedding the whole research process into central gender-theoretical concepts such as gender equality. As a consequence, more reliable findings, as well as more profound interpretations of results from quantitative data analyses, could serve as a fertile ground to support policymakers’ understanding of and actions related to health, gender, and its intersections with other social categories.

BACKGROUND It has been suggested that understanding the complex causes and mechanisms leading to health inequalities will be improved by integrating an intersectionality framework into health research (Bauer,

A version of this article originally appeared as Mena, E., & Bolte, G., on behalf of the ADVANCE GENDER Study Group. (2019). Intersectionality-based quantitative health research and sex/gender sensitivity: a scoping review. International Journal for Equity in Health, 18(1), 1–11. https://equityhealthj.biomedcentral.com/articles/10.1186/s12939-019-1098-8

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2014). To date, intersectionality theory has been extensively considered only in qualitative health research (Bauer, 2014; Dubrow, 2008; Seng et al., 2012; Veenstra, 2011). In contrast, discussion on how intersectionality theory could be implemented in quantitative health research just started recently (Bauer, 2014; Bauer & Scheim, 2019). Seng et al. (2012) proposed to operationalize intersectionality from an eco-social perspective and to model demographic characteristics across different levels, capturing the macro, exo-, meso, and micro system. A recent development, although criticized (Lizotte et al., 2019), is based on Merlo’s (2003) multilevel analytical approach in social epidemiology and expands the multilevel analysis of individual heterogeneity and discriminatory accuracy (MAIHDA) into an intersectional framework (Evans, 2019; Evans & Erickson, 2019; Fisk et al., 2018). Moreover, to reduce health inequities, the consideration of modifiable societal and contextual factors is increasingly called upon (Lofters & O’Campo, 2012; Östlin et al., 2011). Against the background of the fundamental impact of sex/gender on health (­Annandale & Hunt, 2000; Heise et al., 2019; Sen & Östlin, 2010) and the debate among intersectionality scholars about whether gender should be the starting point of theory and analysis (Shields, 2008; Whittle & Inhorn, 2001) or not (Veenstra, 2011; Hankivsky, 2012), Hammarström et al. (2014) recommended studying dynamics of sex/gender, complex intersections, social context, and power relations. Health monitoring and reporting, one important source for evidence-based policymaking, relies on valid epidemiological research (Aldrich et al., 2015). Consideration of sex/gender, at least as binary individual characteristics, is today a standard approach in health reporting (Pöge et al., 2019). Using statistical methods from an intersectionality perspective to more comprehensively assess interrelations and dynamics at several levels in epidemiological health research could further improve health reporting and its sex/gender sensitivity. Implementing an intersectionality framework in quantitative health research offers the possibility to further inter-categorical analyses (McCall, 2005) and to explore a variety of possibly interacting social dimensions. The theoretical concept of intersectionality originated from feminist scholarship (Hammarström et al., 2014), but it is not clear, if the focus on sex/gender is currently part of implementing intersectionality into quantitative data analyses as well. Efforts to implement intersectionality in quantitative health research might differ with regard to sex/gender being considered as a master category or not, in terms of the theoretical embeddedness of the research question and results, and regarding the choice of modelling strategy. Therefore, the aim of our scoping review was to assess whether and how recent studies, conducted by authors that explicitly refer to intersectionality, operationalized and considered sociocultural, socioeconomic, and demographic aspects; quantitatively analysed interactions; and integrated gender theoretical concepts and explanations. Within three selected thematic fields relevant for health reporting, the following case studies were chosen: diabetes as a frequent chronic disease, smoking as one of the most important behavioural health determinants, and physical activity as one of the most relevant targets for health promotion.

METHODS This scoping review was carried out following the PRISMA Extension for Scoping Reviews – PRISMA-ScR (Tricco et al., 2018) within the research project AdvanceDataAnalysis. This project is part of the collaborative research project AdvanceGender (Pöge et al., 2019) and aims to promote sex/gender-sensitive and intersectional quantitative health research and health reporting.

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Search Strategy The PubMed database was searched on May 14, 2019, using the following three search strategies with no restrictions regarding language or publication date: Diabetes: (intersect*[Title/Abstract]) AND (diabet*[Title] OR “metabolic syndrome”[Title]) Smoking: (intersect*[Title/Abstract]) AND (smok*[Title] OR to-bacco [Title]) Physical activity: (intersect*[Title/Abstract]) AND (physical activi*[Title] OR exercis*[Title] OR sport*[Title] OR walk*[Title] OR active commut*[Title] OR sedentary behavio*[Title] OR physical inactivi*[Title] OR cycling [Title])

Study Selection and Inclusion Criteria We included studies on adults within the three defined thematic fields that conducted quantitative data analysis and at least referred to intersectionality in the title or abstract. There was no restriction of the research question. Studies that did not explicitly mention intersectionality but nevertheless used intersectionality terminology, especially using terms like intersection for the combination of two demographic, sociocultural, and/or socioeconomic variables (in the following termed intersectional variables), were additionally regarded as intersectionality-based and included in the review. Title/abstract screening was performed by two reviewers independently; any disagreements were solved by discussion with a third reviewer. Following the title/abstract screening, we included only full-text articles that reported results on any kind of analyses, such as interaction terms in regression analyses, stratified models, or risk/resource profiles. Included studies that did not investigate a particular population subsample a priori were defined as analyses with an inter-categorical approach. McCall (2005) defined inter-categorical complexity as a comparative and multigroup approach in intersectionality-related research that uses categorization strategically and is suitable for application of quantitative methods. For better comparability, we defined studies restricted to a population subsample characterized by at least one intersectional variable from the start as analyses with an intra-inter-categorical approach. Full-text articles with an inter-categorical approach were not excluded if at least two intersectional variables for modelling interaction were considered and multivariable or multivariate analyses (Hidalgo & Goodman, 2013) were used as the main methodological procedure. Articles applying an intra-inter-categorical approach were not excluded if at least one other intersectional variable was considered in multivariable or multivariate analyses (hereinafter referred to as multivariable analyses). Since analyses with an intra-inter-categorical approach were restricted to a certain (intersectional) population s­ ubsample a priori, interaction analyses were defined from a theoretical perspective; therefore, studies conducting main effect analyses with an intra-inter-categorical approach were not excluded.

Data Extraction Data were extracted by one reviewer and completely checked by the second reviewer. Any disagreements were solved by discussion. Data extracted from full-text included first authors, publication

Intersectionality-Based Quantitative Health Research and Sex/Gender Sensitivity

year, title, study location, database, study population, research design, inter-categorical or intra-­ inter-categorical approach, and main methodological multivariable analyses. First, we assessed and rated how analyses were embedded in the intersectionality theoretical framework (TFW) (1 = Intersectionality TFW is stated as theoretical background for conducting analysis or mentioned and discussed somewhere throughout the paper; 2 = Intersectionality TFW terminology is used, without specifically referring to an intersectionality TFW). Second, we compared the statistical strategies applied when modelling interaction by assessing the use and function of the intersectional variables when calculating effect estimates. For this purpose, relying on the progress-plus framework (O’Neill et al., 2014) we defined intersectional ­variables at the individual level (age, sex/gender, race/ethnicity, income, education, employment ­status, ­professional status, socioeconomic status/class-indicator (SES indicator), marital/­partnership ­status, children, single-parent household, immigration, religion, dis/ability, sexual orientation, ­region of residence, urbanity/rurality) and area level (age, sex/gender, race/­ethnicity, immigration, income, education, employment status, SES indicator, marital/partnership status, social capital, urbanity/rurality), and regarding contextual inequality indices (gender inequality, indices of multiple deprivation) and occupational segregation (sex/gender, race/ethnicity). Potential use and functions of intersectional variables within multivariable analyses were confounder (in part without reporting effect estimates), independent determinant for the analysed outcome (e.g., mutually adjustment for several independent variables), stratification, being part of an interaction term, use for risk/ resource factor profiling (e.g., CART-analysis, MAIHDA), and modelling as an intermediate variable. Moreover, results of interaction analyses at the additive scale might be reported as synergy index, RERI (relative excess risk due to interaction) or attributable proportion. Third, we assessed the operationalization of sex/gender and available information about respective data collection, as well as any other additional information regarding operationalization of sex/gender. Fourth, we defined criteria for assessment of gender sensitivity following a solution-based approach, which incorporates modifiable societal and contextual factors accountable for marginalization of socially defined groups because of unequal power relations (Lofters & O’Campo, 2012). Correspondingly, “solution-linked variables,” which are variables that actually drive heterogeneity across social dimensions (Bauer, 2014; Lofters & O’Campo, 2012) and therefore are relevant for explaining sex/gender differences, were defined. Relying on a gender concept that to a large extent was derived from the Canadian Institutes of Health Research ( Johnson et al., 2007) and was used to develop a composite measure of gender (Pelletier et al., 2015), we defined the following solution-linked variables: employment status, education, personal income, family constellation, financial responsibilities, care responsibilities, housework responsibilities, stress level or management, and social support or conflict. Discrimination was additionally defined as a solution-linked variable since it is an important mediating process regarding outcome inequalities from an intersectionality perspective (Bauer & Scheim, 2019; Krieger, 1990). We compared if and how these solution-linked variables were accounted for in the models by comparing their use and function in the included studies, as done with the intersectional variables. In addition, we checked whether solution-linked variables were presented descriptively. Fifth, relying on Hammarström and Hensing’s (2018) investigation on how gender theories are used in contemporary public health research, we assessed whether gender theories were used to test

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hypotheses, to be integrated in various parts of the paper, to develop gender concepts and models, to interpret empirical findings, to understand health problems, to illustrate the validity of theories with health status or health-related behaviour as examples, to be integrated in traditional gender blind theories, and/or to criticize other feminist theories. Sixth, sex/gender sensitivity was assessed by identifying text passages aiming at explaining sex/ gender differences and assigning the text passages to respective central theoretical sex/gender concepts (Hammarström et al., 2014) (see Additional file 1 in the original publication, Mena and Bolte, 2019). Our understanding of sex/gender differences within an intersectionality framework included comparisons between men and women, but also comparisons of subgroups characterized by any further intersectional variable within one gender group comparison (e.g., of Black women versus white women, white men, or Black men). Accordingly, we did not define intersectionality as one of the central theoretical sex/gender concepts defined by Hammarström et al. (2014), but as an overarching analytical frame applicable to the other identified central theoretical sex/­ gender concepts in health research: Gender, Gender Equality, Gender Equity, Embodiment, and sex. We further differentiated if explanations referring to the theoretical concept Gender described ­intra-individual and/or inter-individual processes and sorted the extracted text passages into thematic categories. The theoretical concept of Embodiment was divided into three conceptualizations summarized by Hammarström et al. (2014): the epidemiological perspective describes bodily changes caused by the material and social world, thus constituting different population patterns of health and disease. Social embodiment focuses on the interrelationship between bodies, social relations, and social structure as a collective and reflexive process. Phenomenology relates to the “lived body” and the mind-body-world as an inseparably interwoven entirety.

RESULTS The search strategies led to the identification of 484 possibly relevant articles (diabetes = 141; smoking = 80; physical activity = 263). Excluded studies mostly did not refer to intersectionality (n = 438) or did not conduct multivariable analysis (n = 25) (see Additional file 2 in the original publication, Mena and Bolte, 2019). Overall, 21 articles met our inclusion criteria at the title/ abstract level (diabetes = 6; smoking = 11; physical activity = 4). All studies were published in English. ­Exclusion of publications not mainly focusing on the adult population (four studies) or not conducting interaction analyses (e.g. interaction terms in regression analyses, stratified models, risk/resource profiles) (one study) resulted in a total of 16 included studies (diabetes = 5; ­smoking = 8; physical activity = 3). For bibliography data see Additional file 3 in the original publication Mena and Bolte (2019). Of the 16 articles meeting eligibility criteria (from now on referred to with the letters a–p), 12 were conducted in the United States (a, d, e, f, g, h, i, j, k, l, m, o), two in Canada (c, n), one in Spain (b), and one in Sweden (p). Ten out of the 16 included studies followed an inter-categorical approach (a, c, d, f, g, h, i, k, l, n,); six, an intra-inter-categorical approach. ­Intra-inter-categorical approaches focused at baseline on women (e, j), on young adults (m, p), on immigrants (b), or on participants holding at least a bachelor’s degree and living in (sub-)urban ­areas (o). With the exception of two included studies (c, f ) all other studies reported

Intersectionality-Based Quantitative Health Research and Sex/Gender Sensitivity

regression-based methods as the main methodological approach in multivariable analyses (a, b, d, e, g, h, i, j, k, l, m, n, o, p) (see Additional file 4 in the original publication, Mena and Bolte, 2019). Table 11.1 shows whether the studies used only certain terminology (e.g., using the word ­intersect in combination with at least two intersectional variables) or referred to the intersectionality theoretical framework. Furthermore, it gives an overview with respect to the function of intersectional variables in multivariable analyses. Five studies referred to an intersectionality framework at the title/abstract level (a, c, j, n, o); all other studies used only intersectionality-related terminology (b, d, e, f, g, h, i, k, l, m, p) (information on title/abstract not shown in table 11.1). At the full-text level overall, 11 articles referred to intersectionality as the theoretical framework for conducting analyses (a, b, c, f, g, j, k, m, n, o, p) and five studies continued using only intersectionality-related terminology (d, e, h, i, l) (table 11.1). Age was included in most studies (a, b, c, d, e, f, g, h, i, j, k, l, m, o, p), mainly as a confounder. Sex/gender was considered in every included publication. Race/ ethnicity was addressed in most studies (a, b, c, d, e, f, h, i, j, k, l, m, n, o). Sex/gender and race/ ethnicity were predominantly used for stratification. Sex/gender and race/ethnicity were primarily used jointly as subgrouping variables (a, b, c, d, e, f, h, k, l, m, o) and parts of interaction terms (a, c, f, l, n). Other intersectional variables like education (b, c, e, f, h, k, m, p), marital/partnership status (b, c, e, k, o), income (d, h, k, m, o, p), or immigration (b, c, e, k, p) were considered in about half or less of the included studies, for the most part as confounders. Employment (o), professional status (p), SES-indicator (a), and single-parent household (p) were rarely used in multivariable analyses. If applied, they were used in mutually adjusted models (a, e, j, m, o, p). Area-level intersectional variables (j, o) and contextual inequality indices (g) were infrequently considered. Intersectional variables regarding occupational segregation variables were not regarded at all. Measures of interaction at the additive scale, such as synergy index and attributable proportion, were applied in one paper on interactions between sex/gender and immigration (p). Risk/resource profiling was used with two studies conducting CART-Analysis (i, m). Conclusions regarding differences in use and function of intersectional variables when comparing inter-categorical or intra-inter-categorical approaches cannot be drawn. None of the included studies modelled intersectional variables as intermediate factors. Table 11.2 presents operationalizations of sex/gender and gives insight about information provided by the authors regarding sex/gender data collection. All 14 studies that were not following an intra-inter-categorical approach regarding one sex/gender (a, b, c, d, f, g, h, i, k, l, m, n, o, p) operationalized sex/gender consistently as binary (men versus women). The two studies investigating only women (e, j) also did not further categorize sex/gender (e.g. different categories of sex/ gender identity) and thus relied on the binary view, too. More than half of the included studies did not specify how data about sex/gender was gathered (b, c, d, g, i, k, n, o, p). Two studies used and reported information about sex/gender retrieved from register data (e, j), five studies provided information about sex/gender being self-reported or self-identified by the participants (a, f, h, l, m), and two studies indicated forced choice (f, l). Table 11.3 shows the use of solution-linked sex/gender variables. None of the included studies considered further solution-linked variables that were not already reported with respect to intersectional variables (employment, education, family constellation). The respective variables were all presented descriptively. Most of the studies referring to family constellation used marital/

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Table 11.1.  Intersectionality Theoretical Framework or Terminology and Definition and Function of Intersectional Variables in Multivariable Analysis Diabetes

(1) Framework (2) Terminology

Smoking

Physical Activity

a

b

c

d

e

f

g

h

i

j

k

l

m

n

o

p

1

1

1

2

2

1

1

2

2

1

1

2

1

1

1

1

C D

C

C

C D

C

+

+

INDIVIDUAL-LEVEL VARIABLE Age

C D

C

C

C

C

C

C +

+

∆

Sex/gender + «

+

+ «

+

+ «

+

+

+ ∆

+ «

C D +

«

+

∆ si ap

Race/ethnicity

C + «

Immigration

+ « C

+

C

Income

C D +

+ «

C D

+ ∆

C

+

«

+ «

C D + ∆

+ «

C

C

C

C

C D si ap C

C D

+ « Education

C

C

∆ C

C

C

∆ C

+ ∆ Employment

«

C D ∆

C D « C D

Professional status SES indicator Marital/partnership status Single-parent household Religion (Dis-)ability

C D

C D C D C

C

C

C

C D C

Intersectionality-Based Quantitative Health Research and Sex/Gender Sensitivity

Diabetes a

b

Smoking c

d

e

f

g

Physical Activity h

i

j

Sexual orientation

k

l

m

n

o

p

C D ∆

Region of residence

C D ∆

« C D

Urbanity/rurality AREA-LEVEL VARIABLE Age Sex/gender Race/ethnicity

D + «

Immigration Income Education Employment status SES indicator

C D «

Marital/partnership status Social capital Urbanity/rurality

C D + CONTEXTUAL-INEQUALITY INDEX

Gender inequality Multiple deprivation (IMD) OCCUPATIONAL SEGREGATION Sex/gender Race/ethnicity Notes. + = stratification, C = confounder, D = determinant, « = interaction term, ∆ = risk/resource profiling, = application, si = synergy index, ap = attributable proportion, () = outcome related, and = intra-inter-categorical approach.

partnership status (b, c, e, k, o), one article referred to children living in the home (o), and one study addressed dual- or single-parent household (p) to operationalize family constellation. Regarding all other solution-linked variables that were not concurrently conceptualized as intersectional variables, only one study provided additional descriptive information about outcome-related distress and social support (b). Comparing inter-categorical or intra-inter-categorical approaches, no conclusions regarding differences in operationalization, information provided about data collection, and the use of solution-linked sex/gender variables can be drawn.

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Table 11.2.  Operationalization of Sex/Gender and Information about Data Collection Diabetes a

Physical Activity

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OPERATIONALIZATION Binary

✓

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Binary: only women

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✓

DATA COLLECTION Self-reported/self-identified

✓

✓

Register (clinical, official)

✓

✓

Not specified

✓

✓

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✓

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INDICATION OF FORCED CHOICE Forced choice

✓

✓

Table 11.3.  Use of Solution-Linked Sex/Gender Variables Diabetes a

b

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D « d

d

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C D d

C

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Financial responsibilities Care responsibilities Housework responsibilities Stress level/management

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Discrimination Notes. + = stratification, C = confounder, D = determinant, « = interaction term, ∆ = risk/resource profiling, = intra-inter-categorical approach. d = descriptive, ( ) = outcome related, and

Intersectionality-Based Quantitative Health Research and Sex/Gender Sensitivity Table 11.4.  Use of Sex/Gender Theories in Intersectionality-Based Quantitative Analyses Sex/gender theories were used to Diabetes

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… test hypotheses

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… be integrated in various parts of the paper

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… interpret empirical findings

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… understand health problems

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… illustrate the validity of theories with health status as an example

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… be integrated in traditional gender-blind theories

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Table 11.4 shows how sex/gender theories where used in the articles. In five out of the 16 included studies (e, h, i, k, m) none of the predefined strategies for the use of sex/gender theories were applied. Only four of eight defined strategies were used in the included publications. The strategies applied were to interpret empirical findings (a, b, c, d, f, g, l, n, o, p), understand health problems (a, b, c, d, f, g, j, l, o, p), to integrate gender theories in various parts of the paper (a, b, f, g, j, l, n, o, p), and to test hypotheses (a, b, f, g, l, o). The number of strategies for use of sex/gender theories in the studies varied between two and four. Table 11.5 provides information about which central sex/gender theoretical concepts are referred to when aiming to explain intersectional sex/gender differences and specifies thematically which intra- and inter-individual processes are considered when relying on Gender as a theoretical concept. For four of the 16 included publications, we could not extract a single text passage aiming to explain sex/gender differences. Eleven out of the remaining 12 articles used Gender as a central theoretical concept (a, b, c, d, f, g, j, l, n, o, p). Less than half of the included studies providing explanations for sex/gender differences referred to the other central gender theoretical concepts: Gender Equality (b, e, g, o, p), Gender Equity (b, e, g, o), Embodiment (f, g, j, l), and/or Sex (d, e, l). The number of central gender theoretical concepts addressed within one paper varied between one and four. Regarding the further classification of the theoretical concept Gender into intra-and inter-individual processes, we found psychological/cognitive (a, b, f, l, o), physical/ biological (j, l), ­behavioural (f, j, p), and privilege/resource-related (c) aspects as intra-individual

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Emily Mena and Gabriele Bolte Table 11.5.  Use of Central Sex/Gender Theoretical Concepts and Processes for Explanation of Intersectional Sex/Gender Differences. Diabetes

Smoking

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f

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processes referred to, when explaining sex/gender differences. Inter-individual processes within the theoretical concept Gender were gender norms (b, c, d, f, g, n, o, p), sociocultural (a, b, f, g, j, l, o), discrimination (b, c, d, o, p), social networks/social capital-related (a, b, o), privilege/resource-­ related (j, n), socioeconomic (n, p ), and environmental factors (j). Comparing inter-categorical or intra-inter-c­ategorical approaches, no conclusions regarding differences in use of sex/gender theories and explanations of intersectional sex/gender differences can be drawn.

DISCUSSION The objective of our scoping review was to assess how intersectionality-based approaches are realized in quantitative data analyses and how sex/gender sensitivity is accounted for. Most studies are based on data retrieved from the US population. Sex/gender was the only intersectional variable

Intersectionality-Based Quantitative Health Research and Sex/Gender Sensitivity

used in every study without exception. None of these studies considered other sex/gender dimensions beyond male or female (e.g. gender identity). Information about how data about sex/gender was retrieved were rarely provided. None of the included studies integrated available income, financial responsibilities, care responsibilities, housework responsibilities, stress level/management, social support/conflict, or discrimination as solution-linked sex/gender variables into their description or analysis. The most common methodological approach for analysis of interaction at the multiplicative scale were regression-based methods, mainly with stratified analysis and/or use of interaction terms. Both strategies primarily considered sex/gender and race/ethnicity jointly as intersectional variables. Most studies applying interaction terms referred to intersectionality as a theoretical framework and used between two and four of the defined strategies for applying gender theories. Our results regarding the use of strategies for applying gender theories are in line with Hammarström and Hensing (2018), who found the same four out of eight strategies used in health research studies that conducted quantitative analyses. Bowleg (2012) advised intersectionality scholars to use the word intersectionality in titles, keywords, abstracts, or articles to further a coherent development in this research area. Regarding the included studies applying interaction terms in regression models, all studies without exception referred to intersectionality as a theoretical framework. This might reflect a tendency towards a more profound examination of the research question within an intersectionality framework, when interaction terms in regression models are considered as the main methodological approach. Many aspects of analysis strategies based on an intersectionality framework are already part of modern social epidemiology (Bolte & Lahn, 2015; Galea & Link, 2013; O’Campo & Dunn, 2012). Thus, by focusing on the term intersectionality in this review, other relevant studies might have been missed. It would be worthwhile to further analyse how intersectionality-based studies and modern social epidemiological studies, respectively, use interaction analyses and other more sophisticated methods to investigate, for example, processes of discrimination and power relations as causes of health inequalities in contrast to studies relying on the risk factor paradigm in conventional epidemiology (March & Susser, 2006; Keyes & Galea, 2015; Schwartz et al., 1999). The high proportion of studies referring to intersectionality and thereby primarily focusing on the intersection between sex/gender and race/ethnicity seems best explained by the origin of intersectionality, which is rooted in Black feminism (Crenshaw, 1994). The very frequent consideration of race/ethnicity as an intersectional variable in combination with sex/gender might be a consequence of “the false notion that hierarchical racial categories reflect biological realities” (Harawa & Ford, 2009, p. 214), which is particularly pronounced in the United States as part of its historical development. As a result, the objectively unjustifiable categorization, demarcation, and discrimination of citizens because of unbalanced power relations and power exercise (Crenshaw, 1994) may have led to the popularity of the intersectionality concept in the United States, including the focus on the intersection between sex/gender and race/ethnicity. Furthermore, differences regarding available data in light of the history of race/ethnicity measurement in various countries (e.g., in a European context) (Simon, 2012) might be another reason for researchers outside the United States not to focus explicitly on the intersection between sex/gender and race/ethnicity. The only studies that did not model race/ethnicity as an intersectional variable were two of four studies conducted outside of the United States and are thus broadening the scope of the intersectionality

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framework towards the consideration of different intersectional variables simultaneously. Of note, theories like, for example, minority stress theory (Meyer, 1995), that could be suitable for theorizing intersectionality from a simultaneous perspective, that is, not preferring one intersectional-­ variable over another a priori (Veenstra, 2011), were rarely mentioned in the studies of this review. Only few papers referred to multiple jeopardy (c, n) (King, 1988), theories of social stratification (j), or acute social invisibility (n) (Purdie-Vaughns & Eibach, 2008), terms that might be linked to ­intersectionality-related theories from a simultaneous perspective. Looking at intersectionality from a simultaneous perspective, we could not find an equivalent to the review of central theoretical sex/gender concepts in health research by Hammarström et al. (2014), who aimed at contributing to greater conceptual stringency and provision of a sound conceptualization for gender research in health sciences. A review of theories linked to intersectionality from a simultaneous perspective might enhance the implementation of intersectionality into population health research – with respect to theory and methodology. Even though our results can only be interpreted cautiously, it does stand out that the two studies conducting CART-analysis (i, m) are two out of five studies that did not refer to any gender theories (e, h ,i, k, m) or any other intersectionality-related theory. In addition, both studies used almost none of the defined solution-linked sex/gender variables. “Although theory development is relatively uncommon in the health sciences compared with other disciplines, it is vital to have clear and well-developed concepts in order to develop well-specified and appropriate research questions” (Hammarström et al., 2014, p. 189). However, CART-Analysis is a non-parametric procedure, which allows for simultaneous consideration of multiple intersectional-variables and makes no assumptions about data distribution or independence (Lemon et al., 2003). Therefore, from a methodological perspective, CART-Analysis might be suitable for statistical modelling of the concept of intersectionality by considering different intersectional variables simultaneously. The majority of included studies are based on data analyses of national surveys. In contrast, only one relevant intervention study was found. This finding is not surprising since interaction analyses in general rely on data retrieved from large surveys that can provide sufficient statistical power. In turn, the choice of a modelling strategy could be impacted as well. A key lever for implementation of intersectionality-informed studies would be standardized data collection, especially with a f­ ocus on national surveys, that allows to capture a wide variety of sociocultural, socioeconomic, and demographic dimensions. Even though implementation, especially on a national level, might need time, following recent recommendations to collect survey data about, for example, current gender identity in addition to sex assigned at birth (Bauer et al., 2017; Tate et al., 2013) would allow health researchers to analyse sex/gender dimensions beyond the standardized binary classification. A more differentiated understanding of sex/gender and its interwovenness with other intersectional variables might have the potential to enhance equity in population health. The defined criteria for evaluating the included studies in this scoping review might also be used as groundwork for conducting and reporting intersectionality-based and sex/gender-sensitive quantitative analyses: embedding research questions into an intersectionality-informed framework might be enhanced by linking the theoretical background to more profound intersectionality-­ related theories (e.g., minority stress) by deciding and describing which and why certain intersectional variables are considered important for analysis and by clarifying why the selected statistical

Intersectionality-Based Quantitative Health Research and Sex/Gender Sensitivity

strategy is most suitable for conducting intersectionality-based data analysis. For sex/gender sensitivity, it might be productive to allocate the research question to one of the central theoretical sex/ gender concepts and continually integrate the perspective in various steps of the research process (e.g., to test hypotheses and to interpret empirical findings). Reflecting on how data about sex/ gender were retrieved and what dimensions of sex/gender are actually operationalized, as well as including solution-linked variables into multivariable analysis, could eventually facilitate the further development and implementation of a gender mainstreaming strategy. We relied on the term intersect* used in the title or abstract of the publications to identify relevant studies. This might be conceived as one limitation of our review, since researchers could be using intersectionality approaches without explicitly mentioning intersectionality as a framework or using the respective terminology. The reason most of the included papers originated from the United States might also reflect on how academics in the United States are more likely to use the term compared to scholars in other countries doing similar work without explicitly referring to the intersectionality framework. However, we are not aware of any other explicit term that could be used to detect intersectionality-informed studies. Another concomitant limitation of our review is the low number of studies that fulfilled the inclusion criteria. Therefore, comparisons across the three thematic fields were not possible. This might be because the theoretical intersectionality framework has only recently been introduced into quantitative health research. One strength of our scoping review is the consideration of three distinct health-related thematic fields: diabetes, smoking, and physical activity, which all play an important role in epidemiology and public health. Finally, the in-depth analysis regarding theories, operationalization, and statistical methods can be seen as another strength of our review.

CONCLUSION Quantitative studies with an intersectionality-based approach in the thematic fields of diabetes, smoking, and physical activity focus mainly on the intersection between sex/gender and race/­ ethnicity by using them jointly as subgrouping variables and as parts of interaction terms in regression analyses. Despite the fact that sex/gender was the only intersectional-variable considered in every study, it was exclusively operationalized as a binary. Solution-linked sex/gender variables were rarely considered. The theoretical sex/gender concept of Gender was by far the most frequent gender theory referred to, even though the perspective of Gender Equality and Gender Equity might be more strongly linked to the development and implementation of interventions and policies to reduce health inequalities. To promote sex/gender-sensitive and intersectional quantitative health research and health reporting from a non-simultaneous intersectional perspective, with sex/gender as the main category of theory and analysis, health research will need to go beyond a mainly explorative approach to systematically integrate solution-linked variables indicating modifiable aspects of sex/gender-related living conditions and disadvantages. Furthermore, intersectionality-based sex/gender sensitivity in quantitative data analysis might be advanced by consequently considering multiple sex/gender dimensions and their interrelationship with other intersectional variables. Accordingly, we would like

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to suggest to also further the theoretical development of Gender, Embodiment, Gender Equality, Gender Equity, and Sex as central theoretical sex/gender concepts in health research, with intersectionality as an intrinsic perspective, to better theorize and explain between- or within-group differences based on the entanglement of sex/gender with other intersectional variables.

DISCUSSION QUESTIONS 1 What interacting social dimensions are primarily considered in quantitative health ­research that incorporates an intersectionality framework? 2 How is sex/gender operationalized in intersectionality-informed quantitative health research? 3 How are modifiable societal and contextual factors that may stand for marginalization of socially defined groups considered in quantitative analyses? 4 What role do central gender-theoretical concepts play in intersectionality-informed quantitative health research? 5 Which central gender-theoretical concepts are referred to when interpreting results about sex/gender differences retrieved from intersectionality-informed quantitative data analyses?

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C H A P T E R T W E LV E

Social Influences on Injection Drug Use among a Community Sample of Sex Workers: Intersections of Structure and Agency across the Life Course Cecilia Benoit, Mikael Jansson, Rachel Phillips, Helga K. Hallgrímsdóttir, and Kate Vallance On December 6, 2014, the Conservative-led Canadian government passed into law Bill C-36, the Protection of Communities and Exploited Persons Act (PCEPA). The expressed purpose of PCEPA is to discourage, and ultimately eliminate, prostitution, which is characterized as “an inherently exploitative form of discrimination against women and children.” Underlying this new punitive law is the assumption that sex workers are of one gender – cis women – and that their experiences are homogeneous – that is, all are victims of the wrongdoings of others (Benoit et al., 2014; Benoit, Smith, Jansson, Healey, & Magnuson, 2019). However, research on people working in the sex industry in Canada and most other high-income countries shows that they come from diverse backgrounds, encompassing a range of ages, sexual orientations, gender expressions, education and income levels, and racial and ethnic backgrounds (Benoit, Ouellet, & Jansson, 2016; Benoit, Smith, et al., 2016; Benoit, Ouellet, et al., 2017). Indigenous people are overrepresented in sex work, ranging from 14 to 60 per cent of sex workers across various regions in Canada (Canadian Public Health Association, 2014). While there are no accurate estimates of the gender breakdown of sex workers, most research indicates the industry is highly gendered, with the overwhelming majority of sex workers identifying as cis women (Weitzer, 2009). Nevertheless, approximately 20 per cent of workers identify as cis men or trans people (McCarthy et al., 2012). Moreover, while many studies equate most sex work with street-level work, some research indicates that the visible street industry represents only a minority of sex workers (Benoit, Ouellet, et al., 2017; Benoit, Jansson, et al., 2017; Jeal & Salisbury, 2007). In metropolitan areas of countries such as Canada, the United States, and New Zealand, as many as 70 to 90 per cent of sex workers work in off-street venues that include their homes, massage parlours, strip bars, and peep shows, and as agency-based or independent private escorts (Abel et al., 2010; Benoit & Millar, 2001; Bungay et al., 2011; Bungay et al., 2012; Hanger, 2006; Lowman & Atchison, 2006; Sanders, 2004; Vanwesenbeeck, 2001; Weitzer, 2010). Another dominant theme in the literature, and also underlying the PCEPA, is that sex work is inherently exploitative, and individuals become involved because of childhood trauma, economic

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desperation, and coercion (Farley, 1998, 2005; Stoltz et al., 2007). Yet other research shows that people begin and remain working in the sex industry for a wide array of reasons (Benoit, Ouellet, et al., 2017; Benoit, Smith, Jansson, Healey, & Magnuson, 2019; McCarthy et al., 2014). Although periods of financial need or outright poverty are often key drivers, these are not the only ones. Many choose this work for the autonomy and flexibility it affords – that is, the ability to choose when and where to work, with whom they work, and how much money they earn each week (Murphy & Venkatesh, 2006). Still others see the sex industry as an opportunity to explore their sexuality, to validate their desirability, and to be a part of something that defies social-sexual norms and values (Bernstein, 2007; Benoit, Ouellet, et al., 2017; Weinberg Shaver, & Williams., 1999). Physical and sexual violence against sex workers is also widely reported in the research literature. A recent review examining the prevalence of violence against cis women and transgender sex workers reported rates of nearly 100 per cent in one study to as little as 3 per cent in another study (Shannon et al., 2009). As has been seen in Vancouver’s Downtown Eastside, Indigenous women are more likely to be involved in street-based sex work, to be affected by personal histories of trauma and neglect, and to experience extreme poverty, as well as increased morbidity and mortality, in comparison to non-Indigenous sex workers living and working in the same area (Benoit et al., 2003; Benoit, Smith, et al., 2016; Lowman, 2000; Shannon et al., 2007; Shannon et al., 2008; Spittal et al., 2003). In comparison to street-based workers, cis women working in indoor contexts report less physical and sexual violence overall, have far lower homicide rates, and are better able to avoid harassment from police and residents because of their lack of visibility. Given indoor sex workers’ ability to control and put in place safety protocols, several studies have found that they experience less physical and sexual violence from buyers/clients, in terms of both intensity and frequency (Bungay et al., 2011; O’Doherty, 2011). Yet indoor workers are not free from sexual violence (Benoit & Millar, 2001), and certain groups of indoor workers are more vulnerable than others (Lewis et al., 2005). A final assumption underlying the literature, one that is pertinent to this chapter, is that substance use is widespread among sex workers and especially among those identifying as cis women and Indigenous people who work at the street-level. This group is more often identified as being involved in problematic drug use, particularly injection drug use (IDU), than those working indoors. Sex workers who are drug-involved are believed to be at elevated risk of human immunodeficiency virus (HIV) infection because they may use condoms less consistently and, because of often being in poverty, may agree to unprotected sex for more money (Church et al., 2001). Yet to our knowledge, there is no research exploring the intersections of IDU among sex workers of diverse backgrounds working in different work locations. Moreover, the research on the influences on IDU among sex workers tends to focus on only a small number of variables, especially childhood abuse and neglect, with inconsistent results (Stoltz et al., 2007). Although it is commonly understood that childhood maltreatment, poverty, and early trauma are associated with various adverse health outcomes, including substance abuse disorders (e.g., Anda et al., 2006; Brief et al., 2004; Gupta et al., 2007; Klein et al., 2007; Markowitz et al., 2011), a study by Kerr and colleagues (2009) illustrated the importance of considering how distinct forms of maltreatment can have differential impacts on adolescent initiation into IDU. The authors’ multivariate regression analysis of childhood trauma and IDU among 560 street-involved youth found that only childhood physical abuse was associated with increased likelihood of IDU in adulthood; gender,

Social Influences on Injection Drug Use among Sex Workers

Indigenous status, and emotional forms of abuse and neglect were not significantly associated with IDU in the fully adjusted model (Kerr et al., 2009). While this more recent research on the likelihood of engaging in IDU has included investigation of association with social influences on health such as Indigenous status, homelessness, childhood maltreatment, and neighbourhood poverty (e.g., Kerr et al., 2009; Nandi et al., 2010; Roy et al., 2011), one factor that is rarely included is a childhood history of government care – which includes living in foster care, group homes, and other state-funded institutions (Benoit et al., 2008; Butler & Benoit, 2015; Magnuson et al., 2015). Even though foster care is meant to be a protective intervention against maltreatment and harmful or inadequate caregiving conditions, many studies have suggested that out-of-home placement may actually increase vulnerability. Much of the foster care literature suggests that taking children from their families of origin and placing them in government care has a negative impact on their well-being, increasing the likelihood of behavioural, psychological, developmental, and academic problems (Curtis et al., 1999; Lawrence et al., 2006). A history of government care is also associated with underemployment, homelessness, use of illegal drugs, and involvement with the legal system (Daining & DePanfilis, 2007; Geenen & Powers, 2007; Reid & Dudding, 2006; Tweddle, 2007). Although persons with a history of government care have significantly poorer outcomes when compared to both those who experienced maltreatment but remained at home and those with similar risk characteristics but no history of maltreatment or foster care (Lawrence et al., 2006), it is unclear whether or not government care itself contributes to adverse outcomes for youth or whether these adverse outcomes are related to prior risk factors (Berger, 2009; Daining & DePanfilis, 2007; Fantuzzo & Perlman 2007). Intersectionality echoes some of the arguments of life course and lifespan theories (Elder et al., 2003). These theories maintain that many adult experiences are the products of people’s current, as well as past, conditions and experiences. These approaches emphasize that recognizing agency is essential for understanding behaviours, but they underscore that agency is circumscribed by people’s life histories. Thus, they draw attention to the opportunities and constraints that influence people’s decisions, as well as to the consequences of the chronology of events and experiences that constitute their work and personal lives and efforts to mobilize to improve their circumstances (Benoit et al., 2018; Benoit, Maurice, et al., 2020; Hallgrimsdottir & Benoit, 2007). In particular, early events and experiences can have long-term consequences that may only be realized in adulthood (Anda et al., 2002; Arnett, 2000; Avison, 2010; Hertzman et al., 2001; Magnuson et al., 2021). We employ a combined intersectional and life course framework to shed light on the link between traumatic early life events and other stressors, including ever being in government care before adulthood, current sex work venue, and IDU. There is no evidence of a universal pattern of sex and gender differences, and both factors intersect with Indigeneity, social class, and other relevant influences to cause particular health behaviours and health outcomes that vary across time and place. We use the term intersect here purposefully to refer to intersectionality, which is both a theory and a method that explicitly focuses on differences among groups and seeks to illuminate various and interacting social factors that affect individuals’ lives, including social locations, health status, and quality of life (Hankivsky, 2005; Hankivsky & Christoffersen, 2008). Intersectionality thus seeks to understand what is created and experienced at the intersection of two or more axes of

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diversity, on the basis that it is precisely at an intersection that a completely new social location, one that is more than simply the sum of its individual parts, is formed (Hankivsky et al., 2010; Morrow et al., 2008). The essential insight of intersectionality theory is that various dimensions of social stratification, including sex and gender, but also socioeconomic status, ethnicity, race, and so on, can add up to or culminate in greater disadvantage for some categories of people. Thus, an individual’s genetic endowment and biological heritage interact with their sex and gender statuses, as well as their location in society’s stratification system, to produce their particular health status (Benoit et al., 2009). Intersectionality is also an advancement in that it starts to reveal the true complexity of people’s lives and how social locations interact with each other (instead of simply layering or prioritizing) (Iyer et al., 2008).

THE STUDY The data presented below were collected by the first author, graduate student research assistants, and experiential research assistants (persons with a history of sex industry involvement) in faceto-face interviews. The authors have reported on this unique methodological design elsewhere (Benoit & Millar, 2001; Benoit et al., 2005; Benoit et al., 2015a, 2015b; Jansson et al., 2010). The experiential research assistants were hired and trained as part of a community-academic collaboration that included the authors and a local social welfare service organization staffed in large part by former sex industry workers. Several strategies were used to gather contact information on potential participants – key informants, snowballing, and advertising. These recruiting methods are common to research on marginalized groups and help overcome the limitations associated with having no sampling frame (Heckathorn, 1997). Although the research sample is relatively large (given the hidden nature of the population) and purposely includes cis women and men working in a wide array of sex industry venues, it is nevertheless difficult to estimate the biases inherent in the sample. Thus, the findings cannot be considered generalizable, even within the local setting of the research. The research instrument consisted of 135 closed-ended questions covering background information and early childhood experiences, factors precipitating entrance into the sex industry, working conditions across the various venues, health and safety at work and in personal life, and challenges and benefits of staying/leaving the sex industry. The closed-ended research instrument was completed by 201 participants, 54 of whom had left the industry by the time of the interview. In addition, 27 open-ended interview questions were administered to a subsample (n = 79) of purposively recruited cis women and men participants, all of whom had experience working in indoor venues. These unstructured questions focused on participants’ early childhood experiences, experiences in the sex industry, the social context of their work, the health risks they associate with their work, their health and use of local health services, and future training and career prospects. The reason for administering the open-ended interviews to persons with experience in indoor venues was to broaden knowledge on the more elusive body of indoor workers who are less frequently represented in academic literature than streetbased workers. However, in the course of conducting the research it became apparent that it

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is difficult to neatly categorize workers based on venue, primarily because mobility within the industry is quite common, and the distinctions between different types of work may be permeable, with some workers performing more than one service out of a single venue (Lewis et al., 2005), and others working in more than one venue at a time or over time (Benoit, Ouellet, et al., 2017; Benoit, Jansson, et al., 2017). Therefore, although the open-ended data presented here are informed by at least some experience in indoor venues, such as escort agencies and home-based escort services, both the larger sample and the subsample contain participants representing a multitude of sex industry work experiences. The descriptive data are derived from the closed-ended survey portion of the interview and were analysed using the Statistical Package for the Social Sciences (SPSS). Because the data set is relatively rich in descriptive information, only those data that are relevant to the specific topic of our chapter are presented. Following this, data on participants’ self-reported health are presented to help contextualize the data on IDU. This chapter illustrates the utility of combining intersectionality and life course perspectives for illuminating the complex influences on health issues.

RESULTS Background, Work, and Health A relatively wide age group is covered in this study, with the average age being 35 years. The minimum age was 18 and the maximum 62 years. The majority of participants identified as cis women (80  per cent), and a significant minority (14.9  per cent) of participants declared Indigenous heritage. The percentages of cis women and Indigenous participants are considerably higher than we would expect, based on census statistics from this geographical area around the time of the interview, where 49.5 per cent of the labour force ages 15 to 64 are women and only 2.5 per cent were of Indigenous background (Statistics Canada, 2004a). Just under 40 per cent of participants had completed high school, which was considerably lower than expected based on census statistics (Statistics Canada, 2004b). Over half of participants reported having lived in government care at some point before age 18, a stark comparison to the 1 per cent of children in government care from the same research district in 2005 (Phillips & Benoit, 2005). Almost half of all participants also answered “usually” or “always” to the question of whether their guardian(s) had “throw[n] something at you . . . Slap[ped], kick[ed], [bit] or hit you with a fist . . . . Hit you with object(s).” The median age of entry into the sex industry was 18 years among the sample as a whole. Women participants were slightly younger at age of entry in the sex industry (18 years) than men participants (19 years). The median age of entry into the sex industry was younger for Indigenous participants (17 years). There was substantial variation in reported income depending upon whether participants worked full-time or part-time, but there was little reported variation in income across venues. In fact, one of the benefits of working independently was that all earnings were kept, which was not the case among the escort workers who took home only a portion of the

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money they earned after managers had taken their fees. Just over 16 per cent of the participants who were actively working in the sex industry at the time of the interview were concurrently working outside the sex industry in a mainstream job, suggesting that for the majority of the participants, sex industry work was the main source of income (notwithstanding those who were also collecting income assistance benefits from the provincial government). These income data mirror broader patterns of economic inequities in personal service workers in Canadian society at large (Benoit & Hallgrimsdottir, 2011). Participants mentioned a variety of circumstances that precipitated their entry into this line of economic activity. Just over one-third said that they entered because they were enticed by a presenting opportunity such as having peers who were involved, seeing an employment ad, or having someone approach them with an offer of money for sex. For over one-quarter of participants, however, financial duress – “unable to find a job,” “on welfare with small children,” “living on streets with no income,” “had bills to pay” – was the main motivating factor, and in many cases, economic need overlapped with acting on a presenting opportunity. In addition to opportunity-based and economic reasons, a minority of participants cited their dependency on illicit drugs and alcohol as a motivating factor. A few participants reported that they had been “turned out” by an individual representing a power position such as a “pimp” or by a relative, and some participants said that they had become involved in the sex industry because of an earlier experience of childhood sexual abuse. Reasons for entering sex industry work also varied by gender: whereas women were more likely to enter for economic reasons, men were more likely to enter because of enticement or curiosity, followed by reasons involving drug and alcohol use. The majority of participants had been involved in the sex industry for more than five years at the time of the interview. Among the sample as a whole, the average length of involvement in the sex industry was eight years. Four out of ten participants declared that the street was their current main work location. This is slightly higher than has been estimated elsewhere (Benoit, Smith, et al., 2020) and is a reflection of the study’s design to oversample street-level sex workers to improve comparative analytical options. Finally, one-third of participants reported they had injected drugs in the past six months. While some participants in this study reported relatively high annual incomes from selling sex services (maximum reported was $84,000, including tips) and others reported virtually no income at all, the median income was a modest $18,000 ($20,000 per year for women and $10,000 for men, many of whom worked fewer hours than the women in the sample). Among those who completed the open-ended portion of the interview, the median reported income was slightly lower than that of the participant group as a whole. A minority of participants reported that they were dependent on the use of illicit drugs and/or alcohol. Those who were frequent drug and alcohol consumers, including those who reported injection drug uses (27.7 per cent of cis men and 36.8 per cent of women), reported additional health concerns that may be influenced by the confluence of sex work and substance use. Many of those reporting a history of injection substance use had acquired hepatitis C and a few had acquired HIV. Overall, 36 per cent of women and 28 per cent of men reported having hepatitis C. Similarly, among the seven (3.5 per cent) participants who reported HIV, the majority had a history of IDU, and none attributed HIV infection to sex industry work. In sum, the participants in this sample

Social Influences on Injection Drug Use among Sex Workers

reported a high prevalence of sociodemographic characteristics related to structural disadvantage compared to other Canadians and are generally more disadvantaged than sex workers in our more recent cross-city study (Benoit, Ouellet, et al., 2017; Benoit, Jansson, et al., 2017; Benoit et al. 2018; Benoit, Smith et al., 2020).

MULTIVARIATE REGRESSION ANALYSIS Measures Sociodemographics: Background variables included age (years), gender (1 = woman, 0 = other) and Indigenous status (1 = Indigenous, 0 = other). Injection drug use: This dichotomous variable measured injection of cocaine/crack, heroin, or other drugs during the preceding six months (1 = yes, 0 = no). In care: This dichotomous variable indicated whether the participant had any history of being in the care of the government: (1 = yes, 0 = no or don’t know). Abuse measures: To capture information on past sexual abuse the participants were asked: “When you were at home, did one of your guardians (mother, step-mother, father, step-father, etc.) or other family members ever have sex with you (including touching or attempting to touch you sexually)?” (1 = yes, 0 = no). For physical abuse, a series of questions were asked about the quality of the interaction between the participants and the male and female parent or guardian “with whom they lived the longest while at home.” Three questions for each parent or guardian were used to construct an indicator of physical abuse: “ . . . how often did your [parent or guardian] do the following?  . . . Throw something at you . . . Slap, kick, bite or hit you with a fist . . . . Hit you with object(s).” Participants could choose from five responses, ranging from “never” up to “always.” Those who responded that this was a behaviour of either parent or a guardian “usually” or “always” were coded as having been abused. We chose that cut-off because these categories were most likely to indicate a consistent pattern of abuse—23 per cent of the sample indicated physical abuse by father and 29 per cent reported physical abuse by mother (1 = yes, 0 = no). Over half of the respondents were also victims of sexual abuse while growing up, with women respondents (55.3 per cent) much more likely than men in the sample (33.3 per cent) to have been victimized. In an overwhelming number of these cases, the perpetrator of the sexual abuse was a father/male guardian or other male relative. Educational achievement: Level of education was measured as a dichotomous variable indicating whether or not the participant had completed high school (1 = yes, 0 = no). Street-based location of work: This dichotomous variable was based on a question which asked the participant to indicate the type of venue where they were currently working (street = 1, all others = 0). Independent variables were entered hierarchically, with variables considered to be more distal influences entered first, followed by variables considered to be more proximate influences of IDU entered last. We chose multivariate logistic regression because it allowed us to examine the influence of demographic factors, childhood experiences, educational attainment, and work location on our dependent variable – injection drug use.

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Benoit, Jansson, Phillips, Hallgrímsdóttir, and Vallance Table 12.1.  Influences on Injection Drug Use

Age in years Gender Indigenous identification In care Sexual abuse Physical abuse Yes, high school Street work location Nagelkerke R2

Equation 1

Equation 2

Equation 3

Equation 4

1.021 2.011 1.138

1.036 2.257 0.945 4.147** 0.774 0.607

1.039* 2.212 0.921 3.816** 0.774 0.602 0.710

0.034

0.148

0.154

1.044* 2.025 0.836 3.814** 0.801 0.592 0.695 2.806** 0.213

* p < .05; ** p < .01. Source: Printed by authors.

As shown in table 12.1, basic demographic variables such as age, gender, and Indigenous status were entered first and were without statistical significance at conventional levels. In the second step, we entered having lived in government care, experienced sexual abuse, and experienced physical abuse, and high school completion. While sexual and physical abuse were not significant, a significant relationship between having been in care and IDU emerged; those who have been in government care are more than four times as likely to inject drugs as those who have not been in care. The inclusion of education in the third step was not significant. In the fourth model, age is significantly related to the probability of injecting drugs when controlling for level of education (and all other variables in the model), with the older sex workers having a higher probability of recently injecting drugs. Finally, location of sex work is significantly related to IDU, with street-based sex workers almost three times as likely to report IDU. Government care status remained significant throughout as we developed the model with additional variables.

DISCUSSION Our findings show that one-third of our community sample of sex workers had injected cocaine/ crack, heroin, or other drugs during the six months before being interviewed. This finding suggests that, while significant, IDU is not a universal risk factor in sex work, as some other researchers studying sex work have also found (Benoit et al., 2018; McCarthy et al., 2014; Vanwesenbeeck, 2001; Weitzer, 2010), but it is a major health problem for a significant minority of participants. While we expected that gender, Indigenous status, lower education, and sexual and physical abuse would be significant predictors of IDU, our data do not support this assumption. Confirming part of our results, Bingham et al. (2014) also found that Indigenous women street-based sex workers were no more likely to report IDU drug use than non-Indigenous counterparts. Once we control for other factors, older sex workers are slightly more likely to report injecting one or more substances in the last six months. One interpretation of this finding is that sex workers who inject drugs remain in the industry longer than those who do not inject drugs because they have fewer

Social Influences on Injection Drug Use among Sex Workers

employment options because of their substance use. The cross-sectional design of this study precludes substantial tests of this and alternative hypotheses, a limitation that longitudinal analyses could correct (see, for example, Benoit et al., 2015a; Benoit, Ouellet, et al., 2016; McCarthy et al., 2014). Controlling for the other variables entered in the model, including physical and sexual abuse, we found sex workers who spent part of their childhood in government care are more likely to report recent injection drug use. Other life course researchers have found that stresses in childhood and adolescence have a long-term impact on health behaviour and opportunities (Elder et al., 2003; Evans, McCarthy, Benoit, & Jansson, 2017; Hertzman et al., 2001; Magnuson et al., 2015; ­W heaton, 1990). It appears that for sex workers, having been in government care during childhood and/or adolescence is fundamental to adult IDU (McCarthy et al., 2014). One limitation of this analysis is that we did not include measures of other types of abuse or adverse childhood experience, preventing us from measuring the cumulative childhood stress experienced by some of our participants that other life course researchers have documented. Future research should include the Adverse Childhood Experience (ACE) measure to get a more in-depth understanding of the enduring effect of different types of abuse and neglect on adult IDU (see Anda et al., 2002, 2006). Finally, again controlling for other factors, our analysis shows that street-based sex workers are more likely to report recent IDU than their indoor counterparts. This finding was expected based on the current sex work literature that presents persons working in street-based environments as the most marginalized subpopulation of sex workers (Abel, 2011; Seib et al., 2009; Weitzer, 2009). The cross-sectional design makes causal claims difficult, particularly regarding the relationship between IDU and age. While our relatively large heterogeneous sample is an improvement over homogeneous samples found in most studies of sex workers, our study population was selected in a deliberative and non-random fashion to achieve a diverse group of participants. Despite the findings that childhood abuse was not linked to IDU, it still could be the case that government care is related to childhood abuse. This would suggest a possible collective experience of stress over childhood as documented by other life course scholars (Widom et al., 2005). Although our findings do not indicate a link between gender and IDU, the relatively smaller groups of cis men and trans sex workers could be seen as a limitation in that it underestimates or overshadows the relevance of gender. Finally, our results cannot be generalized to sex worker populations in other metropolitan areas and are additionally limited by the lack of comparison with other groups of service workers and over time. Notwithstanding these limitations, our sampling techniques, diverse measures, and comparison between cis women and men sex workers and across varying work locations are notable strengths. Our findings generally support a combined social influences, intersectionality, and life course framework that explicitly focuses on health differences among groups over time and across space, and seeks to illuminate various and interacting social factors that affect individuals’ lives, including their early childhood experiences, social locations, work experiences, health status, experiences of stigma, and quality of life (Arnett, 2000; Avison, 2010; Benoit et al., 2009; Benoit et al., 2015a, 2015b; Benoit, Jansson, et al., 2019; Benoit, Smith, et al., 2019; Hankivsky & Christoffersen, 2008; Iyer et al., 2008). Our study approached sex work as a form of economic activity that shares many of the habitual, ordinary qualities of other service work in the formal economy. The position that sex work is work is shared by sex worker organizations and ally agencies in Canada and internationally (see fi ­ gure 12.1). Our combined framework made it possible for us to examine the biographical and social factors

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Figure 12.1  Photo from Hot Pink 2019, a fundraiser for Peers Victoria, an organization that provides support for sex workers. Photo credit: Rachel Phillips. Peers Victoria Resource Society.

operating at different levels of society that play a hand in shaping the trajectory of peoples’ occupational lives. We were able to identify not only how these factors individually impact health within a population but also the reasons there are differences in health outcomes across the life course and, further, how these differences are shaped by unequal access to health care and other key resources and result in different risk behaviours, including IDU (Magnuson et al., 2021). The essential insight of our combined intersectional and life course framework is that various dimensions of social stratification, including socioeconomic status, sex, gender, ethnicity, race, age, occupation, and others, not least of all family disruption and involvement in government care in early life, can add up to or cumulate in greater disadvantage for some groups of people and result in significant variation in health equity, even within highly stigmatized groups such as adult sex workers (Benoit et al., 2009; Benoit et al., 2015a, 2015b; Benoit, Ouellet, et al., 2016; Benoit, Jansson, et al., 2019; Benoit, Smith, et al., 2019; Evans et al., 2017; McCarthy et al., 2014). These social patterns have continued to play out during the ongoing COVID-19 pandemic (Benoit, 2020).

POLICY IMPLICATIONS Our study indicates that having lived in government care during childhood or adolescence was a significant predictor of current IDU, which in turn was closely linked to street-based sex work. Understanding the link between living in care, IDU, and work location later in life is important conceptually, not only because these factors are associated with exposure to other health risks (Rekart, 2005) but also because it allows for more targeted interventions aimed at supporting marginalized families struggling with poverty and other challenges, and aimed at young people in government care, where there are tremendous opportunities to develop evidence-based policies and services to improve lifespan outcomes (Lawrence et al., 2006). Whether the persons in our sample’s health experiences were in part determined by their experiences of government care, or prior risk factors such as childhood trauma, which preceded government care, our findings lend evidence to the need to consider both proximal and distal risk factors (Evans et al., 2017; Link and Phelan, 2006; McCarthy et al., 2014). In addition, the study highlights the ongoing need to prioritize the availability of a full complement of treatment and support services, alongside peer-informed harm reduction services, for those experiencing problematic substance use (Belle-Isle et al., 2014). While enhancing the service continuum available to families and those affected by substance use is an important priority, there is also an urgent need to understand the health equity impact of Canada’s most recent punitive laws aiming to repress adult sex commerce. Based on the findings presented above, this policy intervention will further undermine the capacity of sex workers to earn a living and achieve their potential.

Social Influences on Injection Drug Use among Sex Workers

DISCUSSION QUESTIONS 1 What are some of the common misconceptions around people working in the sex industry and how does stigma and systemic racism come into play? 2 Why are government emergency financial responses to the COVID-19 pandemic, such as the Canada Emergency Response Benefit (CERB), out of reach for most sex workers? 3 How does a combined intersectionality and a life course framework help improve understanding of the diversity and complexity of experience among sex workers in relation to their health outcomes? 4 How do Canada’s current criminal laws governing sex work negatively impact the health and safety of sex workers, especially those most disadvantaged by early life circumstances? 5 How can a reframing of sex workers’ rights in the context of health equity lead to meaningful policy change?

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Benoit, Jansson, Phillips, Hallgrímsdóttir, and Vallance Shaver, F., Lewis, J., & Maticka-Tyndale, E. (2011). Rising to the challenge: Addressing the concerns of people working in the sex industry. Canadian Review of Sociology, 48(1), 47–66. https://doi.org/10.1111 /j.1755-618X.2011.01249.x Spittal, P. M., Bruneau, J., Craib, K. J., Miller, C., Lamothe, F., Weber, A. E., Schechter, M. T. (2003). Surviving the sex trade: A comparison of HIV risk behaviours among street-involved women in two Canadian cities who inject drugs. AIDS Care, 15(2), 187–195. https://doi.org/10.1080 /0954012031000068335 Statistics Canada. (2004a). Labour force activity (Catalogue No. 97F0012XCB2001007). Statistics Canada. (2004b). Industry – 1997 North American Industry Classification System (422A), Census – 20% Sample Data (Catalogue No. 97F0012XCB2001046). Stoltz, J. A., Shannon, K., Kerr, T., Zhang, R., Montaner, J. S., & Wood, E. (2007). Associations between childhood maltreatment and sex work in a cohort of drug-using youth. Social Science & Medicine, 65(6), 1214–1221. https://doi.org/10.1016/j.socscimed.2007.05.005 Tweddle, A. (2007). Youth leaving care: How do they fare? New Directions for Youth Development, 113, 15–31. https://doi.org/10.1002/yd.199 Vanwesenbeeck, I. (2001). Another decade of social scientific work on sex work: a review of research 1990–2000. Annual Review of Sex Research, 12(1), 242–289. https://pubmed.ncbi.nlm.nih.gov/12666742/ Varcoe, C., Brown, H., Calam, B., Harvey, T., & Tallio, M. (2013). Help bring back the celebration of life: A community-based participatory study of rural Aboriginal women’s maternity experiences and outcomes. BMC Pregnancy and Childbirth, 13(1), 26. https://doi.org/10.1186/1471-2393-13-26 Weinberg, M. S., Shaver, F. M., & Williams, C. J. (1999). Gendered sex work in the San Francisco Tenderloin. Archives of Sexual Behavior, 28(6), 503–521. https://doi.org/10.1023/A:1018765132704 Weitzer, R. (2009). Sociology of sex work. Annual Review of Sociology, 35, 213–234. https://doi.org/10.1146 /annurev-soc-070308-120025 Weitzer, R. (Ed.) (2010). Sex work: Paradigms and policies. In Sex for sale: Prostitution, pornography, and the sex industry (2nd ed., pp. 1–43). Routledge. Wheaton, B. (1990). Life transitions, role histories, and mental health. American Sociological Review, 55(2), 209–223. https://doi.org/10.2307/2095627 Widom, C. S., Dutton, M. A., Czaja, S. J., & DuMont, K. A. (2005). Development and validation of a new instrument to assess lifetime trauma and victimization history. Journal of Traumatic Stress: Official Publication of the International Society for Traumatic Stress Studies, 18(5), 519–553. https://doi .org/10.1002/jts.20060

C H A P T E R T H I RT E E N

Towards a Broader Conceptualization of Trans Women’s Sexual Health Greta R. Bauer and Rebecca Hammond

This chapter presents our 2015 paper on trans women’s sexual health (Bauer & Hammond, 2015), along with a new introduction to situate this work within the broader contexts of women’s health and intersectionality. Cognizant of the fact that this will be the only chapter on transgender (trans) women’s health, we wanted to take the opportunity to provide some comments with regard to our paper and the situation of trans women in the field of women’s health more broadly. Women’s health, as it has been historically practised and conceptualized, has conflated sex and gender. For example, a major focus has been on the female reproductive system, something trans women do not possess. This focus on the “female” in women’s health extends from the historical conflation of sex and gender and, while certainly not unique to women’s health, this has led to cisnormative ­theories and practices that exclude trans women and erase trans bodies from the purview of “women’s health.” This erasure can have significant health implications (Bauer et al., 2009). At its root, this conflation can be traced back to gender essentialism, which presupposes a set of limitations and expectations on what a woman is and can be (Bohan, 1993). While often the subject of feminist critique for their regulation of gender expression, essentialist ideas of gender also underpin the notion that being a woman is tied to being born female and thus explicitly excludes trans women (Serano, 2007; Jourian, 2015). Another related pitfall has been the adherence to binary conceptualizations of gender. The idea that there are two discrete genders, and that these genders are intrinsically related to sex (all men are males; all women are females), has long been entrenched in women’s health and in health ­research broadly. This belief has led to the systemic erasure of trans people from research (Bauer et al., 2009), which in turn has left providers and policy makers without important data, as the size and diversity of trans communities has been obscured in most data sets. Whereas trans men and

The original version of this chapter appeared in Bauer, G. R., & Hammond, R. (2015). Toward a broader conceptualization of trans women’s sexual health. Canadian Journal of Human Sexuality, 24(1), 1–11.

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trans women may be hidden in study data (included as women or men, categories that are assumed to be monolithically cis – i.e., non-trans), binary notions of gender function to completely erase those who identify outside of the girl/boy or woman/man binary. Since the time of our original Trans PULSE study in 2009–2010 (upon which this chapter is based), there has been an increase in non-binary or agender identities. While “non-binary” was not an identity in broad use at the time, Trans PULSE estimated that about one in five trans people identified only as genderqueer or had identities other than woman/girl or man/boy. This represented a significantly smaller proportion compared with the 48 per cent of 2019 Trans PULSE Canada survey participants who selected non-binary identities as their primary identity (Trans PULSE Canada Team, 2020). It is important to note that non-binary and trans are overlapping categories. Some non-binary persons also would consider themselves to be trans or as an identity under the trans umbrella; others identify as non-binary but very explicitly not as trans (Bauer et al., 2017). To sum, as a consequence of sex/gender conflation and binary conceptions of gender, the field of women’s health has historically not examined trans women (those assigned male at birth who identify as women or something similar) as part of the broader community of women. In a similar vein, men’s health has excluded trans men (those assigned female at birth who identify as men or something similar) from analysis and service provision. Taken as a whole, the entire endeavour of exploring relationships between gender and health has often failed to examine gender diversity through explicit and meaningful inclusion of trans women, trans men, and non-binary people. Moreover, this erasure of trans and non-binary people is symptomatic of an underlying lack of complexity regarding the relationship between the multiple dimensions of sex (e.g., birth assignment, hormones, anatomy) and gender (e.g., identity, expression, role) in shaping health. From an intercategorical intersectionality perspective (McCall, 2005), these may be seen as interacting both with each other and with other social identities or positions that represent axes of social power. In response to the erasure of trans people from research (and the data it produces), the majority of data we have about these communities come from trans-specific research studies, including those we have undertaken such as Trans PULSE and Trans PULSE Canada. While such work has been made necessary in this social context of historically pervasive binary gender essentialism, the broader goal should be to find ways to better surface trans and non-binary people in all forms of research in women’s health and other fields. Thus, while there are instances where it is appropriate (sometimes necessary) to do research with, or provide services to, trans women as a separate group apart from cis women, an intersectional approach that understands the intra-categorical complexity within the classification “women” suggests that working to make women’s health research and services inclusive of trans women is preferable to reinforcing difference. Separate research and service provision strategies can further marginalize the non-dominant group while placing that group at risk for problematic research and has negative health impacts (Gamble, 1997, as an extreme example). Moreover, not working towards trans-inclusiveness in our work serves to reinforce differences between cis and trans women, lets us ignore within-group variation among women, and in the end serves to further retrench essentialist notions of gender (Serano, 2007). While our paper did not take on an explicitly intersectional statistical analysis, it was in many regards fundamentally intersectional because of its assertions that trans women are women (rather than some sort of third gender apart from women), and that knowledge on trans women’s sexual

Towards a Broader Conceptualization of Trans Women’s Sexual Health

health can be situated within women’s sexual health frameworks, supplemented with an understanding of cisnormativity. In so doing, it reflects McCall’s (2005) approach of intra-categorical complexity, here complicating the cisnormative way that the category of “women” has historically been seen as synonymous with “cis women.” We also are attendant to how trans women’s sexual orientation shapes sexual health for trans women. Further analysis of ethno-racial background, socioeconomic status, and other social determinants of health would strengthen an analysis that considers the multitude of factors that intersect to shape our health. Analyses from the larger survey sample in Trans PULSE Canada will examine how these variables intertwine to shape health for trans and non-binary people. Since 2011, Canadian government policy has mandated a gender-based analysis plus (GBA+) approach to research and policy, wherein the “plus” indicates an extension of the government’s longstanding GBA policy to include “multiple characteristics that intersect and contribute to who we are ... , like race, ethnicity, religion, age, and mental or physical disability” (Women and ­Gender Equality Canada, 2021). Within public health, this is expanded to a sex-and gender-based analysis plus (SGBA+) approach to acknowledge the complexity of sexes and genders (Gallagher et  al., 2018). Thus, even at the highest levels of government we now see a commitment to a more complex approach that breaks from the limitations of the gender binary and allows for diversity in the ways that gender affects people’s lives. To ensure an appropriate evidence base for policy and practice, Statistics Canada established new data collection standards on gender and sex in 2018, and launched a new Centre for Gender, Diversity and Inclusion Statistics, explicitly tasked by the federal government with ensuring an intersectional approach to data. Trans health does not render obsolete the notion of women’s health; rather, it directs us to consider its complexities, in terms of both biological and social or intersectional factors that frame different populations of women. In writing about trans women’s sexual health for an audience that includes sex therapists and sex educators, we assure them that much of what they need to do to support the sexual health of trans women can be drawn from what they already know about women’s sexual health. However, this knowledge alone is not sufficient. It becomes clear through our community-based research survey development and analysis that the specifics of sexual health for trans women are shaped not only by differences in biology (or biological history) but also by different social forces. The focus of this chapter is on the sexual health of trans women. More specifically, it is a critical analysis of the available literature and a consideration of the social forces that shape the possibilities for trans women’s sexual identities and experiences. It goes without saying that trans women’s health extends beyond the realm of sexual health, into every other facet of health. Thus, moving towards an integrative approach to trans health must not be limited to sexual health but also consider other areas of health care, public health, and health prevention and wellness. Finding ways to be inclusive of trans women in the context of health care need not be an arduous endeavour. The focus on differences between cis and trans women has distracted from the reality that there are far more similarities than differences. We can adapt existing resources and practices to make them inclusive of all women. A great example are the Sherbourne Health ­Centre’s primary care checklists, appendices in its Guidelines for Gender-Affirming Primary Care with Trans and Non-Binary Patients (2019). Sherbourne Health has taken the profoundly cisnormative checklists (for “men” and “women”) originally published by the College of Physicians and Surgeons of Ontario and made subtle adaptations to make them relevant to trans women and trans men, respectively (Sherbourne Health Centre, 2019).

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We hope that you find this introduction and the rest of our chapter both stimulating and thought-provoking. Many have commented that trans issues represent the next frontier for social justice in the twenty-first century (Hines, 2019). If this is the case, its intersections with women’s health will reshape our work in many ways moving forward.

TOWARDS A BROADER CONCEPTUALIZATION OF TRANS WOMEN’S SEXUAL HEALTH: BAUER AND HAMMOND, 2015 Research on the sexual health of transgender and transsexual (trans) women has focused almost exclusively within three areas of enquiry: postoperative orgasmic potential and sexual satisfaction among trans women who have undergone vaginoplasty (surgical construction of a vagina) as part of a medical transition (e.g., Klein & Gorzalka, 2009), sexual desire and function among those on feminizing hormone regimens (e.g., Wierckx et al., 2014), and HIV-related risk among trans women who are sexually involved with cisgender (cis or non-trans) male sex partners, either through commercial sex or personal relationships (e.g., Baral et al., 2013). While important, this limited focus ignores the sexual health needs of the majority of trans women at most points in their lives. It also reinforces conceptualizations that all trans women medically transition through hormones and/or surgeries and are heterosexual with cis man partners. In response to this limited research, our own work with the Ontario-based Trans PULSE ­Project uses community-based research to orient to trans women as a community with unique ­experiences. We showed that only 15 per cent of trans women have undergone vaginoplasty; among those who indicated they had completed a medical transition, this rose to only 59 per cent (Scheim & Bauer, 2015). Moreover, only 23 per cent reported having a cis man sex partner in the year prior to data collection (Bauer et al., 2012). In fact, half had not had partner sex that year, reinforcing what we had heard in our earlier community soundings: that it can be very difficult to find a good lover and relationship for trans women. What do we know then about sexual health and satisfaction for trans women who have not yet had (or do not intend to have) a vaginoplasty? Those not on feminizing hormones? Those who have not (yet) socially transitioned to live full-time in their felt gender? What about lesbian trans women? Those with trans partners? Those whose recent sexual experiences are exclusively solo ones? These questions are rhetorical, as research has not yet been undertaken on most of these themes. In this paper we draw on our data, existing research, and our community knowledge to explore a broader range of issues regarding trans women’s sexualities.

Understanding Trans Women’s Sexuality:Theoretical Framework Many sexual health issues for trans women will be already familiar to sexual educators and therapists: body image and self-esteem, prior trauma, sexual negotiation and disclosure, reproduction and contraception, preventing infection, identifying personal desires, coming to terms with sexuality, or the need for partners to change sexual activities to accommodate changing bodies. To

Towards a Broader Conceptualization of Trans Women’s Sexual Health

understand what is unique for trans women’s sexual health, we must start by understanding the social contexts of trans women’s lives. Barriers to healthy sexuality can be complicated by a range of trans-specific factors, including beauty and body standards that favour cis bodies, structural barriers to transition, traumatic interpersonal experiences, and the internalization of all these by trans women over the life course. Underlying these barriers to healthy sexuality are systemic beliefs that trans women must always be different from cis women and the related historical (by some sexologists, psychiatrists and feminists) and ongoing (potentially by family, providers, partners, or potential partners) belief that trans women are actually “men,” a notion that can cause great harm. To this end, a central component of this paper will be in understanding how the emerging concepts of cisnormativity and cissexism function to shape and constrain the sexual experiences of trans women and their current or potential partners. Cisnormativity, a term we first introduced ­regarding trans people’s participation in health care systems (Bauer et al., 2009), can also have a profound impact in more intimate contexts. It is the rarely voiced assumption that all domains of sex and gender are consistent within individuals and across the life course: that a human who currently lives as a woman will identify as one and be feminine; that she was raised as a girl and will grow old as a woman; that she has a vagina and ovaries, is penetrated during sex, and has given birth to any children she has. Thus, in a cisnormative society, there is but one way to be (and become) a woman, which begins with being labelled “girl” at birth based on genital appearance. ­Cisnormative expectations are so pervasive that they lead to the common conflation of sex and gender. While cis women can bump up against cisnormative assumptions (e.g., that they have a uterus, though they may not), for trans women it is a continual occurrence. Related to cisnormativity is the concept of cissexism, developed and explicated by Serano (2007). It comprises the set of beliefs and resulting actions that privilege, validate, and essentialize cis identities to the exclusion of trans identities; cissexism formulates trans identities and trans bodies as less real, valid, and ­desirable than cis identities or bodies.

On the Trans PULSE Project We have worked together on Trans PULSE, a broad community-based study of the health of trans people in the province of Ontario. In its published work to date, Trans PULSE explored sexual health in a limited way, with a focus on HIV-related sexual risk. However, we also included survey items created from community experience to reflect concerns trans people had in sexual situations. For this commentary, we have conducted additional data analysis on sexual orientation, ­sex-related body worries and, among those who had socially transitioned, whether one’s sex life had improved, gotten worse, or stayed the same since transition. We offer these as a contribution towards broadening the discussion. We also draw on prior work by our team and others, integrated with discussion of processes affecting sexual health. We explore how cisnormativity and cissexism take shape in the sexual (experienced or desired) lives of trans women, and how they create challenges to developing a positive body image, avoiding sexual anxieties, having good sex, and forming stable healthy relationships.

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Greta R. Bauer and Rebecca Hammond Table 13.1.  Sexual Orientation of Trans Women in Ontario, Canada By Current Hormone Use On Feminizing Hormone All Trans Woman Spectruma Therapy (n = 205) (n = 114)

No Hormone Therapy (n = 81)

%

95% CIb

%

95% CIb

%

95% CIb

Sexual orientation identityc Bisexual/pansexual Gay Lesbian Asexual Queer Straight/heterosexual Two-Spirit Not sure or questioning

40 2 23 8 14 26 15 15

29, 51 0, 4 15, 31 2, 14 7, 20 16, 36 5, 25 8, 23

41 1 35 9 20 22 8 18

27, 56 0, 3 22, 47 0, 18 9, 31 11, 32 0, 17 6, 30

39 4 13 7 6 27 21 11

21, 56 0, 9 2, 24 0, 17 1, 11 10, 45 5, 36 1, 22

Sexual attractionc Trans men Cis men Trans women Cis women Genderqueer persons None of the above

37 48 46 57 31 14

27, 47 37, 59 36, 57 46, 67 21, 41 5, 23

44 58 60 70 38 8

30, 58 45, 72 46, 74 58, 82 24, 51 1, 16

30 41 32 46 25 16

14, 46 22, 59 16, 48 29, 64 10, 41 1, 30

Sex partners, past yearc Trans men Cis men Trans women Cis women Genderqueer persons

4 23 14 24 3

0, 7 14, 32 6, 22 15, 32 1, 5

3 19 18 18 4

0, 6 8, 30 7, 30 9, 27 1, 7

4 28 10 31 2

0, 10 13, 44 0, 21 16, 46 0, 4

Notes: Bold = p < .05 (Rao-Scott chi-square test) a “Trans woman spectrum” includes those labelled male at birth who do not identify as men but identify as women or as another gender. b 95% CI = 95% confidence interval c Survey items were “check all that apply.” Responses will sum to more than 100%.

We draw on findings from the first two phases of Trans PULSE. The first involved a series of community soundings (n = 85) in three cities. Grounded theory was used to develop a model of how erasure functions to render trans people and communities invisible (Bauer et al., 2009). ­Methods for the second phase are described in detail elsewhere (Bauer et al., 2012). Briefly, in 2009 and 2010 we conducted a survey of 433 trans participants age 16 and older, including 205 on the trans woman spectrum. We used a network-based sampling method, respondent-driven sampling, to systematically sample through social networks (Heckathorn, 1997; Heckathorn 2002), and used data on network size to weight by the probability of recruitment (Volz & Heckathorn, 2008). Thus, our results can be interpreted to apply to the population of trans people in Ontario who know at least one other trans person. New results are displayed in table 13.1 and table 13.2. As we used RDS II weights for this analysis, a few results may vary slightly from our earlier result that used RDS I weights (­Wejnert, 2009). We present results for trans women overall, also broken down

Table 13.2.  Sexual Activities and Concerns of Trans Women in Ontario, Canada By Current Hormone Use All Trans Woman Spectruma (n = 205)

On Feminizing Hormone Therapy (n = 114)

No Hormone Therapy (n = 81)

%

95% CIb

%

95% CIb

%

95% CIb

Sex partner number, past year 0 1 2-4 5+

51 25 13 12

40, 62 16, 34 6, 19 4, 19

50 33 12 5

36, 64 20, 47 5, 18 1, 9

50 17 14 19

32, 68 6, 27 2, 26 5, 34

Sexual activities, past yearc Received oral sex Gave oral sex Receptive partner in anal sex Insertive partner in anal sex Receptive partner in vaginal sex Insertive partner in vaginal sex

36 45 30 15 16 29

26, 47 34, 57 20, 40 8, 23 8, 24 20, 39

32 45 22 10 22 26

20, 44 30, 59 11, 33 4, 17 10, 34 14, 38

43 48 39 22 9 35

26, 61 30, 67 22, 57 7, 37 0, 20 17, 52

Worry about physical safety in sexual situationsd Not at all Slightly or somewhat Moderately or very much

30 39 31

19, 42 27, 51 19, 42

31 45 24

17, 44 30, 60 13, 36

30 32 39

12, 48 13, 50 19, 59

Worry that when naked, partner will not see as true genderd Not at all Slightly or somewhat Moderately or very much

20 23 57

10, 30 13, 32 46, 69

14 32 54

6, 21 18, 46 40, 69

27 12 61

8, 47 2, 21 42, 80

Worry that few will want to have sex because transd Not at all Slightly or somewhat Moderately or very much

15 29 56

7, 23 18, 40 45, 68

14 27 59

6, 22 14, 40 45, 73

16 31 53

1, 30 13, 50 33, 73

Worry that people only want to have sex because transd Not at all Slightly or somewhat Moderately or very much

34 41 25

21, 46 29, 53 15, 35

21 49 30

11, 32 34, 63 17, 43

50 32 18

28, 71 13, 51 3, 34

Worry cannot have sex desired until a(nother) surgeryd Not at all Slightly or somewhat Moderately or very much

43 16 41

30, 56 7, 24 29, 54

38 16 46

24, 53 5, 27 31, 61

49 15 36

27, 70 5, 26 15, 56

Change in quality of sex life with transition or coming oute Improved Worsened No change Not applicable

37 29 22 12

24, 49 17, 42 12, 33 5, 19

38 33 21 8

24, 52 18, 48 8, 35 1, 15

36 22 25 17

11, 61 0, 46 7, 43 3, 31

Notes: Bold = p < .05 (Rao-Scott chi-square test) “Trans woman spectrum” includes those labelled male at birth who do not identify as men but identify as women or as another gender. b 95% CI = 95% confidence interval c Survey items were “check all that apply.” Responses will sum to more than 100%. d Limited to those who have ever had sex (n = 174) e Limited to those who have ever had sex and who socially transitioned to live part- or full-time in felt gender (n = 147) a

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by whether they were on feminizing hormone regimens (i.e., estrogens and/or anti-androgens). ­Hormone treatment is often (but not always) concurrent with social transition and can affect libido, produce changes to secondary sex characteristics (e.g., breasts), and have positive effects on mental health.

Who Are Trans Women? The trans women spectrum group in Trans PULSE is diverse in gender and sex. While all were assigned a male sex at birth, 7 per cent indicated they had been diagnosed with a “medically recognized intersex condition” (Scheim & Bauer, 2015). Although 73 per cent identified as “women” or primarily feminine, 27 per cent did not and may hold traditional (e.g., [Indigenous]) identities or identify as bigender, agender, or genderqueer (Scheim & Bauer, 2015). Among trans women, 70 per cent had socially transitioned to live full- or part-time in their felt gender. Hormone therapy was used by 46 per cent. Only 25 per cent had “completed” a self-defined medical transition which could involve different combinations of hormones and/or surgeries, while 32 per cent indicated they were in process and 15 per cent were planning to but had not begun. Not all indicated a need to transition; 11 per cent reported that the concept of “transitioning” did not apply to them. In our study, trans women as a whole were younger than the broader Ontario population (Bauer et al., 2012). A trend that has been widely noted, but not yet quantitatively confirmed, is that trans women are transitioning younger. Today many socially transition as children or youth. In ­Canada, referrals of trans youth to endocrine clinics have increased dramatically over the past decade (­unpublished data), and puberty-delaying drugs are being used to prevent unwanted secondary sex c­ haracteristics (e.g., voice change, growth spurt, facial hair) from developing in these young women before initiating hormone therapy (Khatchadourian et al., 2014). We do not yet know how the earlier reinforcement of their gender identities nor how different social, medical, or family experiences of these younger transitioners might shape their later sexual lives in ways that are different than the current generation of trans women, many of whom transitioned at later ages or have not transitioned. Within the world of sexual health, trans women may be sexual education participants and sex educators, counsellors and counselling clients, researchers and research participants, sexual beings and partners to sexual beings. Trans women can be lesbian, bi, or straight, members of religious groups, racialized, experience disability, or be survivors of trauma or sexual assault. Together these may give rise to experiences that shape their sexual lives just as much as being trans does. While trans identities have historically been pathologized (e.g., gender identity disorder (APA, 2000) and to perhaps a lesser extent now with gender dysphoria in the DSM-V (APA, 2013), in this paper we orient to trans women as a diverse community of women, not as a diagnostic category.

Sex, Gender, and Sexual Orientation To some degree, the routine use of the acronym LGBT to refer to sexual minorities perpetuates the misconception that trans people constitute a sexual orientation. While LGB (lesbian, gay, bisexual) persons constitute minority sexual orientations, “T” (trans) refers instead to a gender

Towards a Broader Conceptualization of Trans Women’s Sexual Health

minority. Physical sex and social gender are not necessarily neatly aligned. Everyone has, in addition to a sex assigned at birth (male or female or intersex), a hormonal sex (based on a preponderance of estrogen or testosterone), genital sex (based on morphology of genitalia), chromosomal sex (XX, XY, XXY, XO), lived gender (male; female; sometimes male, sometimes female; or something else), gender identity (their internal sense of being a woman, man, both, neither, or something in between), and a gender vector (their gender identity’s relationship to sex assigned at birth: i.e., being cis or trans). Moreover, everyone (cis or trans) has a sexual orientation based on attraction, behaviour, or identity, domains, which are not necessarily concordant (Laumann, 1994). Just as cis people’s sexual orientation varies along a spectrum but is typically cleaved off into separate categories, so does the sexual orientation of trans people. Trans women’s sexuality is understood in relation to their gender identity. Thus, if they are attracted predominately to other women (cis or trans), trans women typically self-identify as “lesbian,” “queer,” or a related identity. Conversely, trans women who are attracted primarily to cis or trans men will identify as “straight” or “heterosexual.” We had previously found that most trans men were not straight (Bauer, Redman, et al., 2013). Our data bear out that most trans women also do not identify as straight, nor report attraction exclusively to cis or trans men; 48  per  cent indicated attraction to cis men and 37  per  cent to trans men (it was possible to select both). Among trans women in our analysis, the most common identity was bisexual or pansexual, reported by 40 per cent. Lesbian identity was reported by 23 per cent, straight by 26 per cent, and asexual by 8 per cent. The frequency of asexual identity may be higher than population estimates (Bogaert, 2004; Poston & Baumle, 2010). An asexual orientation for trans women may indicate a lack of sexual attraction, or it may result from, as one of our participants said, the feeling that “as a trans person, sex wasn’t a realm I was allowed to exist in” (Bauer, 2013). We do not know what proportion of asexual-identified trans women are aromantic. Trans women reported attraction to multiple genders of partners, ranging from 31 per cent attracted to genderqueer persons to 57 per cent attracted to cis women. Sexual orientation identity and attraction differed by hormone status, though genders of sex partners did not. Trans women on feminizing hormone treatments were more likely to identify as lesbian or queer and report attraction to trans and cis women. We note that the proportions appeared higher for attractions to all genders among those on hormones, though not always statistically significant; it is possible that, as hormone therapy allows for greater comfort in one’s own body, it increases self-esteem and opens up feelings of attraction to others. While stereotypes and clinic-based or HIV research convey expectations of cis men sex partners, only 23  per  cent had a cis man sex partner in the past year. Half (51  per  cent) had no partners while 24 per cent had a cis woman sex partner, 14 per cent a trans woman, 4 per cent a trans man, and 3 per cent a genderqueer person. Much sexual research on trans women, however, implicitly assumes heterosexuality (and a cis male partner), whether it is research on vaginal depth post-vaginoplasty, research on libido that assumes lack of erectile function is desirable, or research on HIV-related risk that assumes a trans woman having anal sex without a condom is the receptive partner in a semen-exposed activity. As such, identities and experiences of trans lesbians and bi women, asexuals, and trans women with trans partners are rendered invisible in academic literature.

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Sexual Behaviours and Experiences of Trans Women We have produced data on HIV-related risk (Bauer et al., 2012; Bauer, Redman, et al., 2013), some of which relates more broadly to sexual health. For example, among trans women, 15 per cent had engaged in commercial sex work, with 2 per cent indicating current sex work employment (Bauer et al., 2012). While we previously examined past-year sex partner numbers, we can now see that they differ based on hormone treatment status as those on hormones had fewer past-year sex partners. We asked about specific sexual behaviours, which could involve flesh genitals, toys, prosthetics (in the case of trans men partners), or hands/fingers. While individual trans women may have specific sexual activities they are not interested in or do not find pleasurable, trans women as a group engaged in the full range of activities. The most common were oral sex (36 per cent had received, 45 per cent had given). While there were no statistically significant differences in sexual behaviours related to hormone therapy status, 41 per cent worried moderately or very much they could not have the kind of sex they wanted until they had a (or another) surgery. Some trans women feel an aversion to the genitals they were born with, not involving them in any way in sexual situations; one US study found that 11.5  per  cent of trans women with a partner did not allow them to touch their genitals (Iantaffi & Bockting, 2011). Others are either content with this anatomical configuration or do not experience enough genital-specific dysphoria to undergo a painful and potentially risky surgical process. Some trans women choose to have an orchiectomy as an intermediary step before vaginoplasty or as the sole gender-confirming surgery. Many may experience genital dysphoria but be unable to access surgical treatment due to age, contraindications to surgery, or access barriers. Even for those who choose not to have surgery, some level of disconnect may need to be ­addressed in sexual situations. While specific sexual behaviours may be familiar activities (e.g., insertive “penis” in vagina sex), with trans women these activities can take on a different meaning as a type of queer or lesbian sex (akin to cis lesbians using strap-ons). Trans women often will use gender-affirming words rather than “penis,” such as “clit,” or “strapless” and may experience orgasms differently after hormone therapy, both physiologically (absence of, or change to, ejaculate) and subjectively (e.g., multiple orgasms). For trans women post-vaginoplasty, most but not all may be interested in having receptive sex either with flesh penises (with cis men or trans women), fingers, or sex toys. Some trans women may prefer wearing dildos with strap-on harnesses themselves, including some who have not had vaginoplasty. Actual sexual activities can be more creative than those captured in survey data and may be better understood through qualitative research.

Transition and Sexuality There is often a prolonged delay between recognition of one’s felt gender and social and/or medical transition. This is because while 60 per cent of trans women are aware that their bodies did not match their gender before the age of 10 (83 per cent by age 14) even today most do not transition until significantly later. In addition to unwanted physical changes, messages about one’s gender identity, expression, and gendered self-worth may be internalized. Moreover, many trans

Towards a Broader Conceptualization of Trans Women’s Sexual Health

children (pre-transition) learn that it is unacceptable to voice their identities and an extended ­period of ­secret-keeping has the potential to affect mental health and self-image, reinforcing shame. ­Moreover, potential future sex partners (whether trans or cis) internalize these same societal norms, which may require unlearning later in life. “Identity actualization,” as it relates to trans people, involves this work of figuring out that one’s gender is distinct from their sex and from externally imposed expectations, subsequently deciding what modifications to one’s physical body one needs, and figuring out one’s sexuality (Hammond, 2010). This introspective consideration and crystallization of trans women’s sexuality and sexual identity is similar in many respects to queer cis women’s formation of identity and gender expression, but there are some unique challenges that trans women must confront to achieve healthy sexualities; these challenges relate to gender dysphoria, pervasive cisnormative expectations, and internalized and external cissexism. An approach to addressing sexual health for trans women would need to consider different issues over the life course, including for youth and elders, and (for those who transition) over the course of social and medical transition at different ages. We have shown that those who were planning to medically transition but who had not begun the process were at elevated risk for psychological distress, including suicide attempts (Bauer, Pyne, et al., 2013), which may have implications for relationships, sexual partnering, and sex-related worries. Moreover, because cross-sex hormones and genital surgeries are contingent on accessing medical care, barriers to access can prolong this precarious period. Assessment of the effects of transition or coming out on quality of one’s sex life were mixed in our results, with 37 per cent indicating their sex lives had improved, and 29 per cent had worsened. Anecdotally, transition may open up a new period of sexual exploration, including changes in sexual orientation, which may be related to hormone treatment, increasing bodily comfort, constriction or relaxation, of homophobia around partner choice, or other factors. Our results showing that attraction differed by hormonal treatment status support this. Moreover, transitioning while maintaining a relationship will, in many cases, change the public representation of the sexual orientation of the couple. While it is possible that bisexual partners may adapt more readily in this regard, going from a relationship perceived as straight to gay, or gay to straight, can be a challenge for both partners. Thus, periods of social or medical transition should also be considered as transitional periods for sexuality and may be aided with an open attitude, patience, and exploration of sexual desires and response.

Representations of Trans Women’s Sexuality Further complicating issues of sexuality for trans women are the often conflicting expectations and stereotypes about what trans women are “supposed” to do and not do sexually, and what sex “means” with regard to one’s gender. These overlap with broader expectations placed on cis women, but there are also some aspects specific to trans women. Because certain theories and representations (e.g., autogynephilia, “shemale” porn) have been culturally pervasive, and because trans women are likely to come across them, we have to question how they might impact one’s sense of sexual normalcy and well-being, and to what extent these ideas, and the continued pathologizing of trans identities more broadly, may promote internalization of a negative self-image and complicate sexuality.

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Sexuality for trans women can be complicated by a history of research and theory that ties sexual orientation to the etiology of transsexualism. In particular, largely discredited psychopathological theories tie male or female sexual partner choice to two pathways in the development of transsexualism (Blanchard, 1989). Under autogynephilia theory (Bailey, 2003), trans women attracted to men are so gay they become women to attract straight men, and trans women attracted to women are so fetishistic that they become women in response to their own attraction to the idea of themselves as women. Within trans communities, these theories are considered extremely problematic and pathologizing as they reinforce cisnormative and heteronormative understandings of sexuality, and resonate with very few trans women (Serano, 2007). They have been critiqued for positioning all trans lesbians or bi women as fetishists and for sexualizing a not-necessarily-sexual part of one’s identity (gender). Moreover, the theory of autogynephilia has been critiqued for ignoring that ­behaviours such as dressing up for sex or masturbation are also common among cis women (Moser, 2009) and for ignoring that most people imagine themselves based on internal identity or understanding when fantasizing about sex (Serano, 2007). Thus, for trans women who have not medically transitioned, sexual fantasies will often involve imagining themselves with breasts or a vagina, and such fantasies are consistent with sexual fantasy more broadly. In an age in which accessible internet porn increasingly shapes sexual expectations for all women, confronting the “shemale” stereotype can be a challenging process for trans women. Ubiquitous in porn made by and for cis men, shemale stereotypes project a monolithic eroticized image of trans women as having large (often enhanced) breasts but no vagina, using their flesh penises to penetrate partners, and ejaculating. This same anatomic and physiologic combination is what is marketable to cis male clients in sex work and strip bars. Related is the prevailing stereotype that many trans women are themselves sex workers. While we found a significant number in our study had done sex work (15 per cent), it was a minority. While sex work for trans women can be a validating and empowering experience, the linking of trans women with sex work can contribute to perceptions that trans women are suitable for occasional sex but not long-term intimate partnerships. When one sees representations of trans women who are valued primarily for their flesh ­penises and has to juxtapose them with theories that asserts that “real” trans women must abhor this very same body part, it can be difficult to figure out how to relate to one’s genitals, let alone the totality of one’s sexuality. What makes this work additionally challenging is the way that one’s seeming v­ alidity as a “proper” trans woman (and thus as a "real” woman) gets wrapped up in sexuality and also the internalization of sexist ideals regarding female sexuality more broadly (e.g., ­passivity, receptivity, femininity). Particularly in the absence of exposure to alternative resources (e.g., trans-positive theory, trans erotica, feminist porn), it can be difficult and time-consuming for trans women to parse apart their own interests and desires from these representations and ideals.

Trans Women and Potential Partners There are likely multiple factors affecting the high proportion of trans women (51 per cent) who have not had a sex partner within the past year. While researchers note a prevalence of hypoactive sexual desire disorder in trans women post-hormone treatment (Wierckx, et al., 2014) or genital surgery (Klein & Gonzalka, 2009), this is similar to cis women (20 to 30 per cent), other factors are

Towards a Broader Conceptualization of Trans Women’s Sexual Health

likely related to difficulties in finding good partnerships, short or long term. Portrayals in r­ esearch, porn, and popular culture of trans women as fetishists or sex workers can reinforce dynamics wherein potential partners (cis men, in particular) may be interested in sex with trans women as a fetish or in an attempt to have sex they believe is adventurous or kinky. Among trans women, 66 per cent worried that people might only want to have sex with them because they are trans. Conversely, 85 per cent also worried that few people would want to have sex with them because they are trans. These twin concerns represent the two sides of a cissexist coin. While it is easy to see how fear of or aversion to trans women as partners is a direct product of cissexism, the fetishization of trans women is also a function of the way cissexism makes sense of trans bodies as different and therefore “kinky.” Finding sexual partners can be, at times, dangerous. Cisnormativity creates pressures related to disclosure of one’s trans status or history in intimate relationships. Cissexism further complicates this and is evidenced, at its extreme, by the “trans panic” that can occur when a cis partner learns that they are attracted to (or may have had sex with) a trans woman. Trans women who have ­socially transitioned experience the same risks of sexualized violence cis women, do as well as the potential backlash that can occur if they do not disclose (and sometimes even when they do). In sexual situations, 31 per cent of trans women worried moderately or very much about their physical safety; another 39 per cent worried slightly or somewhat. While many cis people may accept trans women to be women in many contexts, for example as co-workers, when it comes to sex and sexuality, they may not. This is evident in our data, wherein the majority of trans women worried that, when naked, their partners would not see them in their true gender. While trans advocates have helped make visible the exclusion of trans women as desirable partners and the stigma that partners of trans women may experience (e.g., Deveaux, 2012), some responses to such advocacy efforts have been vitriolic, in particular by trans-exclusionary radical feminists who equate trans women with men and sex with rape (e.g., Jeffreys, 2014). While Jeffreys and others actively oppose trans equality, for most, cissexist schemas are reflexively incorporated into their own understanding of who they consider to be desirable, akin to how other normative schemas shape desire and beauty standards. The impact of this is that trans women in the process of seeking out potential partners have to continually risk experiencing invalidation and rejection. Trans people themselves are not immune from the impacts of cissexist standards of desirability. We found that trans women were more likely to be attracted to cis men or women than to trans men or women by a difference of approximately 10 per cent. While analogous research on sexual attraction has not yet been undertaken with an exclusively cis population, it is likely that a preference for cis partners (as opposed to trans partners) would be greater in the broader cis population.

Current Partners of Trans Women An under-studied and little-understood population are partners of trans women. They may be lesbian women or straight men who make a choice (either before or after having met a particular trans woman) to include trans women within their broader attraction to women. Others may identify as bi or pansexual, and simply not care whether their partner is cis or trans. Others still may be attracted to gender non-normative people, and yet others were partnered with a trans woman pre-transition, maintaining the relationship through changes in lived gender. While we draw

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on the experience of trans researchers, partners, and community, the fact remains that very little knowledge exists about partners of trans women, why they choose to enter into or remain in sexual relationships with trans women, and what factors impact the quality of their sexual partnerships. It is reasonable to assume that trans women’s partners internalize some of the same messages as trans women and are confronted with some of the same challenges regarding the views of others. For example, cis men or women partnered with trans women may be labelled by others as fetishists. Others may find the legitimacy of their own sexual orientation identities called into question, with cis male partners questioned as to whether they are really gay, and cis lesbian partners viewed as illegitimate lesbians. Long-term partners who choose to stay with trans women as they transition from male to female (or to genderqueer) may have to confront assumptions that they will end their relationship or questions as to why they did not. While it does not explicitly address sex, a recent study of trans women and their cis male partners found that relationship stigma impacted the mental health of both partners as well as relationship quality (Gamarel et al., 2014), and additional research is needed to understand the effects of cissexism and relationship stigma on trans women and their partners of all genders.

Sexual Health Basics: Infections, Screening, Fertility, Contraception Sexually transmitted infections, bacterial vaginosis (BV), cancer screening, fertility, and contraception are common considerations within sex education and clinical care for all women, including trans women. Hormones change volume and composition of sex fluids, yet it is not known how these may or may not impact viral loads for fluid-borne infections (e.g., HIV) or sperm counts and fertility. Cases of human papillomavirus-associated lesions (Weyers et al., 2010) as well as bacterial infections (e.g., gonorrhoea) (Bodsworth et al., 1995) have been documented in the neovaginas of trans women. BV may be common in trans women and can have symptoms that affect one’s sexual well-being (e.g., odour, discharge). One study (Weyers et al., 2009; n = 50) found that nearly all participants lacked neovaginal lactobacilli and most evidenced a complex microflora similar to BV. A recent trial suggests that supplementation with oral probiotics may help trans women achieve a more balanced microflora and reduce BV-like symptoms (Kaufmann et al., 2014). While trans women who have had vaginoplasty will generally not have a cervix, and may have a lower risk than cis women for gynaecological and breast cancers, general screening guidelines can be applied to trans women (Canadian Cancer Society, 2014; Sherbourne Health Centre, 2014). This includes vaginal vault Pap smears, and breast and prostate cancer screening, although risk for the latter is likely low if on hormone treatment. Fertility can be a concern; 24  per  cent of trans people are parents while 32  per  cent want (­additional) future children (Pyne et al., 2015). Alternatively, some trans women may be trying to avoid an unintended pregnancy. It should not be assumed that hormone treatment provides contraception for trans women partnered with fertile cis women or trans men (for whom testosterone is also not a reliable contraceptive). Discussion of sperm banking should always precede hormone treatment to permit the future possibility of biological children with a cis woman or trans man, or via surrogate (T’Sjoen et al., 2013).

Towards a Broader Conceptualization of Trans Women’s Sexual Health

Moving Forward: From Transsexuality to Trans Sexualities To begin to understand trans women’s sexuality, we need to recognize that sexual orientation and gender identity are separate and distinct and dispatch the notion that sexuality is linked to the etiology of transgenderism. We must shift our focus from using sex to try to understand transsexuality to making sense of trans sexualities. Sexuality educators and counsellors can draw on their skills and knowledge of cisgender sexual health, aided by consideration of how the cisnormative context of our social world and cissexist experiences may impact the intimate lives of trans women and their partners. Trans women may need support to unravel internalized ideas of how sex “should be” for women generally, or for trans women specifically, and to explore and embrace a sexuality unencumbered by stereotypes and expectations. Current resources for counselling trans women and couples rarely address the sexual aspects of relationships in any depth and more sexual health resources are needed. Recent work from the trans community has provided the first realistic representations of how trans women have sex and relate to their bodies. For example, Trans Bodies, Trans Selves (2014) includes a chapter on intimate relationships by Sarah E. Belawski and Cary Jean Sojka and a chapter on sexuality by Tobi Hill-Meyer and Dean Scarborough. Internet-available sexuality and infection-prevention resources include Brazen: Trans Women’s Safer Sex Guide (Page, 2013), Trans Women: Trans Health Matters (Terrence Higgins Trust, 2012) and Fucking Trans Women: A Zine about the Sex Lives of Trans Women (Bellwether, 2010). Books of trans erotica including multiple short stories (Blank & Kaldera, 2002; Taormino, 2011) can aid trans people and their partners to explore sexual desire. Trans women’s sexuality is also represented in varying forms within the feminist queer porn movement of the past decade. Directors such as Courtney Trouble, Shine Louise Houston, and Tobi Hill-Meyer have actively represented a diversity of women’s bodies in their work, including trans women who have, and have not, had vaginoplasty. New cancer screening materials have been developed for trans women. In particular the ­Canadian Cancer Society’s “Get Screened” campaign provides cancer prevention information for trans women and health providers (Canadian Cancer Society, 2014). Trans-specific resources such as these, while of value, do little to combat the broader systemic erasure of trans women’s sexuality. Thus, it is also important to consider trans inclusion when developing programs or carrying out research with the broader population so that trans women are actively included. Considerations in identifying and including trans participants in survey research have been published (Bauer, 2012), but trans women are often still not identified in research. For example, Ontario’s HIV epidemiological tracking is limited to two sex/genders (“male” or “female”) but also includes gender-related “risk factors” (i.e., “sex with men” and “sex with women”) that base risk on cisnormative assumptions. While “best practices” for trans inclusion in programming are not clear, some good examples exist, such as sexuality retailer and educator Good For Her (2014) in Toronto, which makes explicit “that when women is indicated, this includes trans women” in its advertising of limited-attendance workshops. Drawing from our research and community knowledge, we offer specific suggestions for research and practice with trans women in the fields of sexuality research, education, health care delivery, and counselling, which we have summarized in table 13.3. More generally, they encompass a few key themes. First, avoid cisnormative assumptions and recognize that research participants,

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Table 13.3.  Suggestions for Research, Practice, and Supporting Trans Women’s Sexual Health Sector

Information or Practice Needs

Sexuality Research

• Avoid assumptions that research participants will be cis. • Avoid making assumptions about sexual activity, preferences, or orientation of trans women or their partners. • Collect data in a way that permits identification of trans women. • If talking about cis women, use cis rather than biological, natal, or normal women. • Involve trans people as researchers, if possible, as well as participants. • Describe the partners of trans women, including those who partner before, during, or after social or medical transition. • Develop a deeper understanding of the relationship of trans women to their body (including but not limited to their genitals), and how this impacts sex. • Describe sexual health of trans women and their partners of all genders. • Identify factors that impact the sexual health and relationship quality of trans couples. • Explore the sexuality and sexual health of trans women who have chosen to not (or not yet) transition, but who identify as female or primarily feminine. • Explore the sexuality of trans women who have not recently engaged in partner sex, including asexual women. • Explore impacts of transition on sexuality at different ages, different life points, and in different eras (regarding relative levels of social acceptance). • Explore how a young age of transition (before or during puberty) shapes sexual identity and experience. • Identify trans women in existing HIV and sexually transmitted infection surveillance studies, to more accurately estimate risk and prevalence. • Quantify the impacts of hormone treatment on fertility. • Quantify cancer risks (i.e., prostate, neovaginal, penile, breast) for trans women.

Sex Education

• Avoid assumptions that clients, participants, or their partners are cis. • Develop sexual health education for trans youth within school curricula. • Incorporate varied trans bodies into sexually transmitted infection prevention and safer sex information. • Develop and use sex education materials (video and print) on sexual activities for trans women and their partners of varying sexes/genders, including for those with disabilities or who are aging. • Avoid making assumptions about the sexual activity, preferences, or orientation of trans women or their partners.

Clinical Care

• Avoid assumptions that patients or their partners are cis. • Recognize that not all medical issues relate to a client’s gender identity or hormone treatment. • In primary care, consider using established protocols to provide hormone therapy to trans clients in uncomplicated cases, particularly as not receiving transition care when needed increases distress and suicide risk. • Provide counselling on fertility preservation options prior to initiating hormone treatment. • Provide clear contraceptive information for trans women with fertile cis women or trans men partners. • Assist with access to reproductive assistance services. • Provide trans-competent testing and treatment for sexually transmitted infections. • Provide support and care after vaginoplasty (post-surgical and long-term). • Screen for cancer, sexually transmitted infections, and bacterial vaginosis as appropriate. • Screen for sexual or physical violence in relationships. • Avoid making assumptions about sexual activity, preferences, or orientation of trans women or their partners.

Counselling

• Avoid assumptions that clients or their partners are cis. • Offer couples counselling, including sexual issues, for trans women and their partners of all genders. • Ensure that counselling on body image and self-esteem considers the impacts of cisnormativity and cissexism. • Support trans women in exploring and understanding their sexuality, and in developing language to discuss sexuality, sexuality disclosure, and negotiating sexual situations. • Avoid making assumptions about sexual activity/preferences/orientation of trans women or their partners. • Provide support for how sexuality may change over the course of social and/or medical transition, and over the life course.

Towards a Broader Conceptualization of Trans Women’s Sexual Health

clients, patients, and program participants may be trans or have trans partners. Second, identify and develop information and resources for trans women, their partners, and professionals. This works to counter the systemic erasure of trans women in research and practice contexts (Bauer et al., 2009). Third, confront cisnormativity and cissexism in research and practice – for example, through affirming trans women’s gender or recognizing potential need for contraception within a lesbian couple. Working with trans women is not as daunting as it may seem. Trans women are, fundamentally, women, and those who understand women’s health and their experiences will have a good foundation. In addition, beginning to think through the concepts of cisnormativity and cissexism and how these intertwine in the everyday lives of trans women and their partners will help provide a basis from which to empathize with trans women and help them develop healthy sexualities. Including trans women in research and practice is not just a matter of equity and human rights but can also be a profoundly important and rewarding experience.

DISCUSSION QUESTIONS 1 Choose one of the following topics: body image, sexual negotiation and disclosure, ­prevention of sexually transmitted infections. In what ways might this issue be similar or different for trans women and cis women? Where would you look for information to better understand this issue? 2 How might the field of women’s health look different if conceptualized as sex, gender, and health? What are the challenges and the opportunities in this reconceptualization? 3 How might you go about designing a research survey that captured the full diversity of gender identities? What would be some challenges to achieving this? What are some ways in which adding a “trans woman” category might be inadequate? 4 What data have you seen about trans women during the COVID-19 pandemic, or about trans and non-binary people in general? What problems could the erasure of trans and non-binary people create? 5 If you are cisgender, what types of privilege do you think you experience by being ­cisgender? How do these intersect with or differ from other types of privilege you have (or do not have) access to?

ACKNOWLEDGMENTS This work was supported by an operating grant from the Canadian Institutes of Health Research, Institute of Gender and Health [Funding Reference #MOP-106478]. Partners in Trans PULSE included the Sherbourne Health Centre (Toronto), The 519 Church Street Community Centre (Toronto), The University of Western Ontario (London), Wilfrid Laurier University (Waterloo), and Rainbow Health Ontario. The Trans PULSE Steering Committee members were Greta Bauer, Robb Travers, Rebecca Hammond, Anjali K, Matthias Kaay, Jake Pyne, Nik Redman, Kyle Scanlon (deceased), and Anna Travers. The authors wish to acknowledge the 16 Community Engagement Team members and other Trans PULSE contributors who worked to develop and promote the survey, and all of our participants who shared their sometimes very personal information.

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Greta R. Bauer and Rebecca Hammond REFERENCES American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., Text Revision). American Psychiatric Association. (2013). The diagnostic and statistical manual of mental disorders (5th ed.). Bailey, J. M. (2003). The man who would be queen: The science of gender-bending and transsexualism. Joseph Henry Press. Baral, S. D., Poteat, T., Strömdahl, S., Wirtz, A. L., Guadamuz, T. E., & Beyrer, C. (2013). Worldwide burden of HIV in transgender women: A systematic review and meta-analysis. Lancet Infectious Diseases, 13(3), 214–222. https://doi.org/10.1016/S1473-3099(12)70315-8 Bauer, G. R. (2012). Making sure everyone counts: Considerations for inclusion, identification and analysis of transgender and transsexual participants in health surveys. In S. Coen & E. Banister (Eds.), What a difference sex and gender make: A gender, sex and health research casebook (pp. 59–67). canadian Institutes of Health Research, Institute of Gender and Health. Bauer, G. (2013). It’s all in the context: Structural and psychosocial challenges to HIV prevention with transgender women. In J. Gahagan (Ed.), Women and HIV prevention in Canada: Implications for research, policy, and practice (pp. 157–174). Women’s Press. Bauer, G. R., Braimoh, J., Scheim, A. I., & Dharma, C. (2017). Transgender-inclusive measures of sex/gender for population surveys: Mixed-methods evaluation and recommendations. PLoS ONE, 2(5), e0178043. https://doi.org/10.1371/journal.pone.0178043 Bauer, G. R., & Hammond, R. (2015). Toward a broader conceptualization of trans women’s sexual health. Canadian Journal of Human Sexuality, 24(1), 1–11. https://doi.org/10.3138/cjhs.24.1-CO1 Bauer, G. R., Hammond, R., Travers, R., Kaay, M, Hohenadel, K. M, & Boyce, M. (2009). “I don’t think this is theoretical; this is our lives”: How erasure impacts health care for transgender people. Journal of the Association of Nurses in AIDS Care, 20(5), 348–361. https://doi.org/10.1016/j.jana.2009.07.004 Bauer, G. R., Pyne, J., Francino, M. C., & Hammond, R. (2013). Suicidality among trans people in Ontario: Implications for social work and social justice / La suicidabilité parmi les personnes trans en Ontario: Implications en travail social et en justice sociale. Revue Service Social, 59(1), 35–62. https://doi.org/10.7202/1017478ar Bauer, G. R., Redman, N., Bradley, K., & Scheim, A. I. (2013). Sexual health of trans men who are gay, bisexual, or who have sex with men: Results from Ontario, Canada. International Journal of Transgenderism, 14(2), 66–74. https://doi.org/10.1080/15532739.2013.791650 Bauer, G. R., Travers, R., Scanlon, K., & Coleman, T.A. (2012). High heterogeneity of HIV-related sexual risk among transgender people in Ontario, Canada: A province-wide respondent-driven sampling survey. BMC Public Health, 12, 292. https://doi.org/10.1186/1471-2458-12-292 Belawski, S.E., & Sojka, C. J. (2014). Intimate relationships. In L. Erikson-Schroth (Ed.), Trans bodies, trans selves (pp. 335– 354). Oxford University Press. Bellwether, M. (2010). Fucking trans women: A zine about the sex lives of trans women. http://fuckingtranswomen .tumblr.com/ Blanchard, R. (1989). The concept of autogynephilia and the typology of male gender dysphoria. The Journal of Nervous and Mental Disease, 177(10), 616–623. https://doi.org/10.1097/00005053-198910000-00004 Blank, H., & Kaldera, R., (Eds.) (2002). Best transgender erotica. Circlet Press. Bodsworth, N. J., Price, R., & Davies, S. C. (1995). Gonococcal infection of the neovagina in a male-to-female transsexual. Sexually Transmitted Diseases, 21(4), 211–212. https://doi.org/10.1097/00007435-199407000-00005 Bogaert, A. F. (2004). Asexuality: Prevalences and associated factors in a national probability sample. Journal of Sex Research, 41(3), 279–287. https://doi.org/10.1080/00224490409552235 Bohan, J. S. (1993). Regarding gender: Essentialism, constructionism, and feminist psychology. Psychology of Women Quarterly, 17(1), 5–21. https://doi.org/10.1111/j.1471-6402.1993.tb00673.x Canadian Cancer Society. (2014). Get screened: Trans women and people on the spectrum. http://convio.cancer .ca/site/PageServer?pagename=SSL_ON_TW_Home

Towards a Broader Conceptualization of Trans Women’s Sexual Health Deveaux, D. (2012, January). Introducing the cotton ceiling - Keynote address at no more apologies: A trans-cis women’s dialogue. Erickson-Schroth, L., ed. (2014). Trans bodies, trans selves: A resource for the transgender community. Oxford University Press. Gallagher, G., DesMeules, M., & Chultem, M. (2018, February 27). Sex-and gender-based analysis plus (SGBA+) at the Public Health Agency of Canada. Gamarel, K. E., Reisner, S. L., Laurenceau, J-P., Nemoto, T., & Operario, D. (2014). Gender minority stress, mental health, and relationship quality: A dyadic investigation of transgender women and their cisgender male partners. Journal of Family Psychology, 28(4), 437–447. https://doi.org/10.1037/a0037171 Gamble, V. N. (1997). Under the shadow of Tuskegee: African Americans and health care. American Journal of Public Health, 87(11), 1773–1778. https://doi.org/10.2105/AJPH.87.11.1773 Good for Her. (2014). Sexuality workshops. http://www.goodforher.com/catalog/sexuality_workshops Hammond, R. (2010). The social organization of health care for trans youth in Ontario [Master’s thesis, Dalhousie University]. DalSpace. http://hdl.handle.net/10222/13105 Heckathorn, D. D. (1997). Respondent-driven sampling: A new approach to the study of hidden populations. Social Problems, 44(2), 174–199. https://doi.org/10.2307/3096941 Heckathorn, D. D. (2002). Respondent-driven sampling II: Deriving valid estimates from chain-referral samples of hidden populations. Social Problems, 49(11), 11–34. https://doi.org/10.1525/sp.2002.49.1.11 Hill-Meyer, T., & Scarborough, D. (2014). Sexuality. In L. Erikson-Schroth (Ed.), Trans bodies, trans selves (pp. 355–389). Oxford University Press. Hines, S. (2019). The feminist frontier: On trans and feminism. Journal of Gender Studies, 28(2), 145–157. https://doi.org/10.1080/09589236.2017.1411791 Iantaffi, A., & Bockting, W. O. (2011). Views from both sides of the bridge? Gender, sexual legitimacy, and transgender people’s experiences of relationships. Culture, Health & Sexuality, 13(3), 355–370. https:// doi.org/10.1080/13691058.2010.537770 Jeffreys, S. (2014). Gender hurts: A feminist analysis of the politics of transgenderism. Routledge. Jourian, T. J. (2015). Evolving nature of sexual orientation and gender identity. New Directions for Student Services, 2015(152), 11–23. https://doi.org/10.1002/ss.20142 Kaufmann, U., Domig, K. J., Lippitsh, C. I., Kraler, M., Marschalek, J., Kneifel, W., Kiss, H., & Petricevic, L. (2014). Ability of an orally administered lactobacilli preparation to improve the quality of the neovaginal microflora in male to female transsexual women. European Journal of Obstetrics & Gynecology and Reproductive Biology, 172, 102–105. https://doi.org/10.1016/j.ejogrb.2013.10.019 Khatchadourian, K., Amed, S., & Metzger, D. L. (2014). Clinical management of youth with gender dysphoria in Vancouver. Journal of Pediatrics, 164(4), 906–911. https://doi.org/10.1016/j.jpeds.2013.10.068 Klein, C., Gorzalka, B. B. (2009). Sexual functioning in transsexuals following hormone therapy and genital surgery: A review. Journal of Sexual Medicine, 6(11), 2922–2939. https://doi.org/10.1111/j.1743-6109 .2009.01370.x Laumann, E. O. (1994). The social organization of sexuality: Sexual practices in the United States. University of Chicago Press. McCall, L. (2005). The complexity of intersectionality. Signs, 30(3), 1771–1800. https://doi.org/10.1086/426800 Moser, C. (2009). Autogynephilia in women. Journal of Homosexuality, 56(5), 539–547. https://doi.org /10.1080/00918360903005212 Page, M. M. (2013). Brazen: Trans women’s safer sex guide. The 519 Church Street Community Centre. https://web.archive.org/web/20160417105918/http://librarypdf.catie.ca/pdf/ATI-20000s/26424.pdf Poston D. L., & Baumle, A. K. (2010). Patterns of asexuality in the United States. Demographic Research, 23, 509–530. https://doi.org/10.4054/DemRes.2010.23.18 Pyne, J., Bauer, G. R., & Bradley K. (2015). Transphobia and other stressors impacting trans parents in Ontario, Canada. Journal of GLBT Family Studies, 11(2), 107–126. https://doi.org/10.1080/1550428X.2014.941127

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Greta R. Bauer and Rebecca Hammond Scheim, A. I., & Bauer, G. R. (2015). Sex and gender diversity among trans persons in Ontario, Canada: Results from a respondent-driven sampling survey. Journal of Sex Research, 52(2), 1–14. Advance online publication. https://doi.org/10.1080/00224499.2014.893553 Serano, J. (2007). Whipping girl: A transsexual woman on sexism and the scapegoating of femininity. Seal Press. Sherbourne Health Centre. (2014). Guidelines and protocols for trans care. Sherbourne Health Centre. (2019). Guidelines for gender-affirming primary care with trans and non-binary patients. https://www.rainbowhealthontario.ca/product/4th-edition-sherbournes-guidelines-for-gender -affirming-primary-care-with-trans-and-non-binary-patients/ T’Sjoen, G., Van Caenegem, E., & Wierckx, K. (2013). Transgenderism and reproduction. Current Opinion in Endocrinology, Diabetes and Obesity, 20(6), 575–579. https://doi.org/10.1097/01.med.0000436184 .42554.b7 Taormino, T. (Ed.). (2011). Take me there: Trans and genderqueer erotica. Cleis Press. Terrence Higgins Trust. (2012). Trans women: Trans health matters. https://www.rainbowhealthontario.ca /resource-library/trans-women-trans-health-matters/ Trans PULSE Canada Team. (2020). Health and health care access for trans & non-binary people in Canada: National, provincial, and territorial results. Trans PULSE Canada. https://transpulsecanada.ca/results /report-1/ T’Sjoen, G., Van Caenegem, E., & Wierckx, K. (2013). Transgenderism and reproduction. Current Opinion in Endocrinology, Diabetes and Obesity, 20(6), 575–579. https://doi.org/10.1097/01.med.0000436184.42554.b7 Volz, E. & Heckathorn, D. D. (2008). Probability-based estimation theory for respondent driven sampling. Journal of Official Statistics, 24(1), 79–97. Wejnert, C. (2009). An empirical test of respondent-driven sampling: Point estimates, variance, degree measures, and out-of-equilibrium data. Sociological Methodology, 39(1), 73–116. https://doi.org/10.1111/j.1467-9531 .2009.01216.x Weyers, S., Lambein, K., Sturtewagen, Y., Verstraelen, H., Gerris, J., & Praet, M. (2010). Cytology of the “penile” neovagina in transsexual women. Cytopathology, 21(2), 111–115. https://doi.org/10.1111/j.1365 -2303.2009.00663.x Weyers, S., Verstraelen, H., Gerris, J., Monstrey, S., dos Santos, G., Santiago, L., Saerens, B., De Backer, E., Claeys, G., Vaneechoutte, M., & Verheist, R. (2009). Microflora of the penile skin-lined neovagina of transsexual women. BMC Microbiology, 9, 102. https://doi.org/10.1186/1471-2180-9-102 Wierckx, K., Elaut, E., Van Hoorde, B., Heylens, G., De Cuypere, G., Monstrey, S., Weyers, S., Hoebeke, P., & T’Sjoen, G. (2014). Sexual desire in trans persons: Associations with sex reassignment treatment. Journal of Sexual Medicine, 11(1), 107–118. https://doi.org/10.1111/jsm.12365 Women and Gender Equality Canada. (2021). What is gender-based analysis plus? https://women-gender -equality.canada.ca/en/gender-based-analysis-plus/what-gender-based-analysis-plus.html

C H A P T E R F O U RT E E N

“Women and Madness” Revisited: The Promise of Intersectional and Mad Studies Frameworks Marina Morrow

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, amid 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 (Beackman & 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 anti-psychiatry 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 forms of oppression – sexism, racism, colonialism, and, notably, sanism. I draw examples from several Canadian jurisdictions to illustrate how these discourses have shaped mental health and social policy decisions that have negatively affected diverse groups of women. I end by advocating for a merger of intersectional and

The original version of this chapter appeared in Morrow, M., & Halinka Malcoe, L. (Eds.). (2017). Critical Inquiries for Social Justice in Mental Health. University of Toronto Press, pp. 33–59.

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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, Appignanesi, 2007; Burstow, 1992; Caplan & Cosgrove, 2004; Penfold & Walker, 1983; Smith & David, 1975; Ussher, 1991). Alongside these critiques were writings by women of their personal accounts of mental distress3 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 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 deinstitutionalization 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,

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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, webzines, and formal networks dedicated to critically evaluating psychiatry and broader mental health care systems (for example, Mad in Canada, MindFreedom, and Mad in America in the United States, the Critical Psychiatry Network in Britain and the International World Network of Users and Survivors of Psychiatry) and to preserving the history of deinstitutionalization and psychiatric survivors (Madness Canada, https://madnesscanada.com, and the Toronto Psychiatric Survivors’ Archives, https:// pubhist.info.yorku.ca/institution/psychiatric-survivor-archives-of-toronto/). 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). 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 (as 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

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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 et al., 2005; Metzl, 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 framework 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 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. 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 and culture” (for example, Bayer, 1987; Busfield, 1996; Fernando, 2010; Shaw & Proctor, 2005, as cited in British Psychological Society, 2013, p. 3). This DCP declaration has been followed by UN reports that underscore the ways in which a strict adherence to a biomedical model in mental health undermines a social understanding of mental health and human rights approaches (Pūras, 2019). Thus, internationally the debate about the relative role of the biological and the social in mental health continues to unfold and to be fuelled by revisions to the DSM and discussions about mental health system compliance

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with international human rights mechanisms and initiatives (i.e., the UN Convention on the Rights of Persons with Disabilities and the WHO Quality Rights Initiative4). 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 of 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, US war veterans and the diagnosis of post-traumatic stress disorder) and those that argue for a broader, more inclusive understanding of the brain (for example, the neurodiversity movement spawned by people diagnosed with autism and by 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 deinstitutionalization 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 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 et al., 2011).5 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

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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’”6 (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. 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 review of this literature suggests that evidence about the role of inequities in mental health falls into several overlapping categories (Ingram et al., 2013). These categories include literature that utilizes a social determinants framework (for example, Alegría et al., 2003; Candy et al., 2007; Li et al., 2009; World Health Organization, 2013); 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 et al., 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; Burstow, 2015; Burstow et al., 2014; Caplan, 1995; Caplan & Cosgrove, 2004; Daley et al., 2019; LeFrançois et al., 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, postcolonial, 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

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(Morrow & Halinka Malcoe, 2017; 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 (Burstow, 2015; Burstow et al., 2014; Ingram, 2011; LeFrançois et al., 2013; O’Hagan, 2014; Perlin, 2000). Specific to postcolonial and decolonizing approaches is the goal of investigating colonialism and its ongoing damaging effects on mental health and exposing the ways in which psychiatry has historically been used as a tool of colonization (Mills, 2014; Summerfield, 2012; Ibrahim, 2017). Decolonizing approaches therefore value the contributions of Indigenous knowledge and Indigenous practices (see Allan and Smylie, chapter 5, this volume; see Varcoe and McKenzie, chapter 7, this volume). Scholars using critical sociological, Mad studies, feminist, postcolonial, 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) 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 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 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;

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National Collaborating Centre for Methods and Tools, 2012; Pederson et al., 2003; Status of Women C ­ anada, 2014; Whitehead et al., 2004). Indeed, there is an emerging international body of evidence on ­community-based supports that foster equity and human rights (WHO, 2021). 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 et al., 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 et al., 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 30 years. I argue that biomedicalism and neoliberalism mutually reinforce individualistic 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 et al., 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 et

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al., 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”),7 the increased use of market mechanisms in health-and mentalhealth-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 et al., 2009). In the Canadian social policy context neoliberalism has been actualized through massive cuts to social programs and through substantial policy changes in the health and social service sectors (Finkel, 2009). These changes have had deleterious effects on mental health care systems and, especially, on housing, income supports, and employment programs (Morrow et al., 2006; Morrow et al., 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 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 historical and contemporary 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 had implications for people with mental health problems with respect to income security and employment opportunities (Morrow et al., 2009). While neoliberalism plays out in a variety of ways regardless of the ruling provincial political party, liberal and conservative governments have historically instituted more cuts to social services while social democratic governments have generally tried to preserve or bolster social supports. For example, in British Columbia changes were 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 et al., 2006; Morrow et al.,

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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 system-wide 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 percent, and instituted some of the deepest cuts to social programs in Canadian history (Morrow et al., 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 by the Employment and Assistance for Persons with Disabilities Act) (Morrow et al., 2006). These two policy changes were particularly devastating for people with mental health problems because they triggered a massive reassessment of people on disability assistance. In the wake of several highly publicized suicides by people who were in the midst of this reassessment, the BC government was forced to halt the process for applicants with diagnoses of mental illness to receive disability benefits (Auditor General, 2004; Morrow et al., 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. With the election of the New Democratic Party in 2017, there was a reinfusion of resources into mental health (it is the only province with a Ministry of Mental Health and Addictions) with a focus on supports for youth (BC Ministry of Mental Health and Addictions, 2019) and on supports to address the growing number of deaths caused by a toxic illicit drug supply (BC Government, 2017). The establishment of the First Nations Health Authority in 2013 has also meant more recognition of the impact of colonization on Indigenous mental health and further resources for Indigenous-led supports. Similarly, in Ontario when the Conservatives defeated the Liberals in 2018, many policy changes and cuts ensued as well as massive health care restructuring, the impact of which on mental health is still not fully known (Van der Zwan, 2019). Federally, there has been some recent reinvestments in supports such as housing (a National Housing Strategy, see Government of Canada 2016a) and mental health supports for Indigenous communities (see Government of Canada, 2016b) and related to the COVID-19 pandemic (see, for example, Government of Canada, 2020). However, community-based mental health programs, especially those that focus on peer support or specialized supports for certain populations (for example, new immigrants, refugees, LGBTQ, and women) continue to be cut in favour of funding more medicalized forms of support (for example, Assertive Community Treatment). Considering fewer and fewer community-based supports, biomedical approaches often accompanied by increased police involvement in the community are becoming the default form of mental health treatment for most people (Van Veen et al., 2018). This dominant 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, 2015; Chammartin et al., 2011; Fabris, 2011; Van Veen et al., 2019; Van Veen et al., 2018; Pũras, 2019). Policy changes have occurred alongside an intensified governmental discourse that promotes individualism and independence through, for example, an illness self-management discourse (Teghtsoonian, 2008) and the discourse of recovery (Morrow, 2013). The increased dominance of these

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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, the 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 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, we 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 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

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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; Morrow & Halinka Malcoe, 2017; 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 peoples’ experiences of the mental health care system. For example, in the work of Clark et al. (2013) (and see Allan and Smylie, chapter 5, this volume; see Varcoe and McKenzie, chapter 7, 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 Indigenous 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 (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 et al., 2014). An 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 et al., 2017). 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 et al., 2017; 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 et al., 2013).

The Promise of Intersectional and Mad Studies Frameworks

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 et al., 2013). Described as an “interdisciplinary and multi-vocal” praxis (LeFrançois et al., 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. 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.

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DISCUSSION QUESTIONS 1 The relationship between the feminist movement and the psychiatric survivor movement has sometimes been described as uneasy. What concerns have been raised by psychiatric survivors about the role of feminists? 2 What role has the American Psychological Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5) played in medicalizing mental health? 3 What are the central tenets of biomedicalism? Of neoliberalism? How do they reinforce each other? 4 In the chapter, several examples are given of how neoliberalism has shaped policy with respect to mental health. Cite two of these examples and describe their implications for people with lived experiences of mental distress. 5 How might intersectional and Mad Studies frameworks help to counter narrow biomedical understandings of mental health?

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 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. 4 The World Health Organization’s Quality Rights initiative is designed to improve mental health care and promote the rights of people with psychosocial, intellectual, and cognitive disabilities. See https:// qualityrights.org. 5 Some Mad activists eschew an illness framing altogether in favour of an understanding of madness as productive (Fabris, 2011; O’Hagan, 2014). 6 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. 7 Responsibilization is a “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, 2008, p. 276).

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CHAPTER FIFTEEN

The Intersecting Social and Structural Contexts of Navigating HIV Risk and Access to Care among Women Andrea Krüsi and Kate Shannon

While there is a substantial body of research on the clinical, biological, and individual-level ­determinants of access to the continuum of HIV care among women living with HIV (WLWH), far less is known about the intersecting social, structural, and policy drivers that shape negotiation of HIV prevention and uptake along the HIV continuum of care among cisgender and transgender women in Canada. In 2016, about one in five people living with HIV in Canada were women. ­Racialized women are disproportionately affected by HIV in Canada. In 2016, 36.5 and 36.2  ­percent of all HIV incidents among women were among Black and Indigenous (including First Nations, Métis, and Inuit) women, respectively (Bourgeois et  al., 2016). In 2016 among women in Canada, heterosexual contact accounted for the majority (63.5 per cent) of HIV cases, followed by injection drug use (27.3 per cent) (Bourgeois et al., 2016). Previous research has identified that WLWH in ­Canada are more likely than men to be unaware of their HIV status and to have experienced d ­ elays in accessing HIV treatment, and they have been documented to have lower rates of adherence to HIV treatment (Aziz & Smith, 2011, 2012; Hull et al., 2012). In British Columbia, women living in poverty, women with a history of illicit substance use, and women living in rural areas consistently have suboptimal access to HIV care, including late initiation of treatment, and lower adherence (Carter et al., 2013; Tapp et al., 2011; Wang et al., 2013). The differences in HIV outcomes by sex and gender are embedded partly in sex-based biological differences: the possibility of heterosexual HIV transmission from male to female is twice as high as the risk of female-to-male transmission (Loutfy et al., 2014). However, the differences in HIV outcomes by sex and gender need to be conceptualized as firmly rooted in intersecting social, economic, and power imbalances. Also, national and regional statistics are based on biological sex as binary (male/female), and thus specific to cisgender women and men, with substantial gaps in the reporting of HIV burden and access to care among transgender individuals. This is particularly concerning given that global estimates of HIV burden among trans women are approximately 20-fold higher than among cisgender women and men (Poteat et al., 2015). Traditional epidemiological conceptualizations of HIV risk and outcomes among women often ignore how gender

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intersects with other social and structural drivers across race, culture, and economic status (East et al., 2011; Shannon & Csete, 2010). The concepts of structural violence or vulnerability have previously been useful in framing poor health and HIV risks experienced by marginalized populations (Argento et al., 2011; Katsulis, 2008; Shannon, et al., 2008; Simić & Rhodes, 2009). This more expansive definition of violence includes consideration of how social and structural forces embedded in the organization of society – for example, laws, policing, welfare and child protection policies, racism, stigma, and gender inequalities – render particular groups of people, such as WLWH, disproportionately vulnerable to interpersonal violence and harm (Quesada et al., 2011). More recent iterations of structural ­violence or vulnerability have been expanded to further emphasize the role of positionality in ­social suffering (Quesada et al., 2011). Intersecting structural positioning frames choices, influences ­decision ­making, and shapes opportunities. Vulnerability to poor health is produced as the outcome of position in a hierarchical social order and a network of power relationships that shape agency (Quesada, et al., 2011). To elucidate the intersecting and constitutive relationships between marginalized social identities and structurally embedded violence that shape the lived experiences of women affected by and living with HIV, we will draw on a number of case study vignettes from our extensive qualitative and ethnographic work with marginalized women in Metro Vancouver (Krüsi et al., 2012; Krüsi et al., 2014; Krüsi et al., 2016; Krüsi et al., 2017; Krüsi et al., 2018; Lyons et al., 2015; Shannon et al., 2008). All names and some potentially identifying details of the women’s circumstances have been changed to maintain their confidentiality. The case vignettes presented here are based on diverse ethnographic methods, including participant-observation, in-depth interviews, and focus groups, that aimed to examine how social and structural factors, such as stigma, gender inequality, racism, punitive sex work and HIV non-disclosure legislation, and policing, intersect to shape health inequities, sexual health, and HIV/AIDS among marginalized populations. This work was conducted in the context of two large community-based research projects led by the Centre for Gender and Sexual Health Equity in partnership with community, academic, and policy experts since 2004 (e.g., Goldenberg et al., 2017; Shannon et al., 2009). Both projects include interview, outreach, and nursing staff with a range of experiential assets to reflect the affected communities including sex workers, WLWH, Indigenous women, trans women, and women with a migration background. Qualitative and ethnographic data collection runs alongside two longitudinal cohorts. One is known as the AESHA cohort (An Evaluation of Sex Workers Health Access) following on- and off-street sex workers (Shannon et  al., 2007), and the other is the SHAWNA cohort (­Sexual Health and HIV/AIDS: Women’s Longitudinal Needs Assessment) following cisgender and transgender women living with HIV. Both research projects are community-based longitudinal studies with bi-annual follow-up, focused on evaluating the physical, social, and policy environments shaping sexual health, violence, HIV vulnerability, and access to care among self-identified cisgender and transgender women (Shannon et al., 2007). AESHA is guided by a large community advisory board, which was established in 2004, comprising sex work organization representatives and health and policy experts. The SHAWNA project is guided by two advisory boards: a broader stakeholder advisory board of HIV care and support service providers and policy experts, and a positive women’s advisory board of more than 15 WLWH who provide critical guidance and input on research and knowledge translation activities. Drawing on previous research and ethnographic

The Intersecting Social and Structural Contexts of Navigating HIV Risk and Access to Care

and qualitative data from the AESHA and SHAWNA projects, we will use case study vignettes to elucidate the intersecting relationships between marginalized social identities and the structurally embedded violence that shape HIV risk and access to care among women in Metro Vancouver.

HOMELESSNESS AND HOUSING Previous research has highlighted the importance of housing and residential instability in shaping both the negotiation of HIV risk and treatment outcomes (Buchanan et  al., 2009). The role of homelessness and unstable housing in shaping interpersonal HIV risks, such as unprotected sex and receptive syringe sharing, are well documented (Duff et al., 2011; Feng et al., 2013). Much of the research on homelessness, housing instability, and HIV has been conducted with limited consideration of how gender and experiences of homelessness and residential instability intersect. The structurally embedded violence of homelessness and residential instability must be contextualized to understand how gender and power relations shape the negotiation of HIV risk and health outcomes (Bourgois et al., 1997; Lazarus et al., 2011; Maher & Curtis, 1992). For example, fleeing domestic violence has been cited as one of the strongest contributors to women’s homelessness, especially when intertwined with economic instability and poverty (Pavao et al., 2007; Tutty et al., 2014). Accordingly, poverty and gender-based violence can form a “downward spiral” that can increase women’s housing instability (Tutty et al., 2014). Regarding risk of violence, HIV, and housing, a growing body of research has focused on sex workers. Sex workers, especially those who are racialized, are living in poverty, or identify as transgender, have been disproportionately affected by the HIV epidemic (Baral et al., 2012; Bingham et al., 2014; Poteat et al., 2015). Homelessness and marginal housing are known to increase sexual risk among sex workers through higher levels of unprotected sex and a greater number of clients refusing to wear condoms (Surratt & Inciardi, 2010). Additionally, homelessness is associated with increased risk for workplace physical and sexual violence (Shannon et  al., 2009) and sexual violence by primary non-commercial partners (Argento et  al., 2014). Previous qualitative work in Vancouver has identified privately owned single-room occupancy hotels (the main housing options available to women living in poverty in Vancouver) as marked by fear of violence and sexual abuse for many women (Lazarus et al., 2011). Curfews and restrictive guest policies were found to negatively impact women’s lives by alienating women from their support networks and impeding their ­income-generation activities by restricting sex workers from bringing clients into their rooms. These policies force sex workers to service clients in outdoor public spaces, previously associated with elevated violence (Shannon et al., 2009) and reduced control over condom negotiation with clients (Shannon et al., 2008), and thus increase women’s risk of HIV and sexually transmitted diseases. The continued emphasis on prohibitive legislative approaches to the regulation of sex work intersects with the establishment of safer sex work environments in the context of housing (Krüsi et al., 2012). Indeed, prohibitive legal frameworks and police enforcement have consistently been linked to elevated risks for violence and reduced ability to negotiate safer sex transactions among sex workers (Decker et al., 2014; Shannon & Montaner, 2012), with a disproportionate burden of police scrutiny and violence falling on racialized and gender minority sex workers (Krüsi et al.,

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2016; Lyons et al., 2015). It has been estimated that the decriminalization of sex work in Canada could reduce as much as 39 per cent of new HIV infections among female sex workers and their clients over the next decade (Shannon et al., 2015). Restrictive legislative approaches, policing, and economic constraints, all shape and interact with the social, policy, and physical features of particular sex work environments, including pervasive social inequalities, restrictive and insufficient social assistance policies, and the lack of safe and affordable housing. To illustrate how intersecting physical, social, and policy features of a specific sex work environment shape the risk of violence and HIV, we draw on an excerpt from an interview with Ashlee in 2010, which focused on sex work and housing (Krüsi et al., 2012). Ashlee is a cisgender, middle-age, white woman who supports herself financially through sex work and has a history of criminalized substance use. She lives in a non-profit run low-barrier housing program for marginalized women in Vancouver. Before moving to this particular building Ashlee had lived in a privately operated co-ed single-room occupancy building where she had often felt unsafe ­because of an atmosphere marked by intimidation and violence. During that time, she had to service her sex work clients mainly in cars, where she felt she had limited control over negotiating sexual transactions, including price, customer condom use, and services offered. Her current ­cisgender- and transgender-women-only building’s guest policy allows residents to bring clients into their room for transactional sex encounters, despite the criminalized status of sex work in Canada. The building provides a number of environmental-structural supports, including the support of other residents or staff in removing violent or non-paying clients, and security cameras. For Ashlee, these sex work policies in the context of her housing program afforded an increased level of control over sexual transactions and enhanced her sense of safety, which allowed the refusal of unwanted risky services, such as unprotected sex (see also Krüsi et al., 2012). I like to do it [a sex work transaction] on my territory. You know that you’ve got people around you

that you can count on. You can stop when you want to ... Out there you’re like a hostage almost. You

feel almost that bad if you were out there. You’re going to settle or you’re going to put yourself in a bad position maybe. If it’s not going good you’re stuck and that’s not a good feeling. You don’t want to be

isolated then you might be willing to hurt yourself in order to maybe get home. You maybe have to do extra things just so that you can get home and that’s not cool.

Ashlee’s narrative suggests that, despite the lack of formal legal support, the ­environmentalstructural supports afforded by unsanctioned indoor sex work environments in the context of supportive housing, including surveillance cameras, direct access to “bad date” reports, and support from other residents and staff in removing violent clients, facilitated women’s control over sex work transactions. This highlights how intersecting physical, social, and policy features of a specific sex work environment shape the negotiation of safety and HIV/STI risk reduction in sex work transactions (Krüsi et al., 2012). It also highlights the structurally embedded stigma and violence of legal approaches that prohibit the broader implementation of such programs and disallow sex workers to work together in creating safer sex work environments. Housing and homelessness are also linked to poorer health outcomes, reduced adherence to medication, and reduced engagement in HIV care and support. For example, people living with HIV

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(PLWH) who lack stable housing are more likely to delay entry into HIV care, have poorer access to primary care, are less likely to receive antiretroviral therapy, and are less likely to be able to adhere to HIV treatment regimens (Aidala et al., 2016; Kidder et al., 2007; Leaver et al., 2007). Similarly, homeless PLWH receiving HIV treatment are more likely to have stopped taking these medications compared to PLWH who are stably housed (Kidder et  al., 2007). ­Concerningly, among homeless women ages 18 to 42, HIV has been identified as a leading cause of death (Cheung & Hwang, 2004).

STIGMA AND DISCRIMINATION To elucidate how the intersection of housing instability, violence, and stigma can shape access to HIV treatment we draw on Claire’s story. Claire is a cisgender woman in her late 20s, has been using criminalized drugs since her teenage years, and has been struggling with mental health issues for about the same time span. Claire is a white woman who identifies as bisexual. Over the years, Claire has supported herself through various informal and often illegal sources of income generation, including selling illicit substances. When AK (first author) first met Claire in the context of ethnographic work on HIV seroconversion over a decade ago Claire was involved in a lower level criminalized drug dealing operation that constituted a relatively stable income. However, her work in selling drugs, because of its illegality and lack of workplace regulation, was marked by numerous stressors, including long hours, exposure to violence, and limited freedom of movement, as she had to be present in a particular location so customers could find her. Claire, during that time, had already been diagnosed with HIV and her doctor visited her in the place where she worked and lived to provide care. However, because of the limited freedoms, ongoing violence, and long hours of work, Claire quit and was later accused of stealing a significant amount of money. This compromised her safety substantially through violent threats of retribution. Leaving her place of work also contributed to Claire becoming homeless, couch surfing, no longer being connected to care, and the discontinuation of her HIV medication. In an effort to conceal her HIV status from the people she was staying with, Claire had discarded all her antiretroviral medications. [I was worried] people are gonna see me taking pills and then wonder what I’m taking them for so I threw out a bunch of them cause I was scared that my friend [who she was staying with] would find out. I just kept my mood pills. ’Cause I know I need those more than I need the ARV’s ’cause I get

fucking crazy. Well I’ve told like two or three people [about my HIV]. That I trust and, I know they

won’t say anything. But there’s such a stigma. Down here it’s worse than in the real world, man. Because, everybody has it down here and nobody will admit it.

Over the next six months AK met with Claire frequently and discussed getting back on ARVs and finding housing. Claire did not want to get back on medication before she had found a stable and private place to live. Claire was also clear that she would not visit an HIV-specific clinic or support services for fear of stigma and being outed as living with HIV. Claire’s story highlights the complex intersection of HIV-related stigma, violence, the war on drugs, and housing instability in shaping access to HIV care and adherence to medications, which is often not captured by research

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on women’s access to HIV treatment and care. It also highlights how interventions to support WLWH need to address not only HIV-related issues but also intersecting structural factors, such as housing stability, substance use, and violence related to the criminalization of substance use. Stigma and discrimination are key factors contributing to the HIV epidemic globally and in C ­ anada (Loutfy et al., 2012; Rueda et al., 2011). As described by Claire’s narrative above, HIV-related stigma can constitute a significant barrier to accessing HIV specific care, support, and housing because of fear of inadvertently being exposed as living with HIV. Indeed, findings from Metro Vancouver indicate that involuntary HIV disclosure is widespread, affecting approximately half of WLWH who access care in Metro Vancouver, and is linked to increased risk of experiencing HIV-related violence (Barreto et al., 2017). HIV-related stigma has been linked to barriers to HIV testing and health care services by deterring women from accessing sexual health services and treatment (Govindasamy et al., 2012; Wong, 2013). Supports and services that are specifically targeted at PLWH may not be accessible for some because of the ongoing stigma and fear of inadvertent disclosure of their HIV by accessing services. Overwhelmingly, in the literature on HIV-related stigma, stigma has been understood predominantly in individualistic terms as “negative feelings” towards PLWH that justify discrimination and coercive legislation. However, Parker and Aggleton (2003) highlight that HIV-related stigma should be understood in relation to broader notions of culture, power, and difference, and is thus not merely an expression of individual attitudes or cultural values but is central to the constitution of the social order and in perpetuating social and health inequalities. As such, HIV-related stigma should be conceptualized as a form of structural violence that is intimately linked to the reproduction of social difference and as reinforcing and reproducing existing inequalities of class, race, gender, and sexuality (Parker & Aggleton, 2003). HIV-related stigma intersects with other forms of stigma and oppression, including racism, colonialism, sexism, and transphobia. The negative effects of HIV-related stigma are amplified for women who live in poverty; sex workers; women of racial, gender, and sexual minority communities; and for those who use criminalized substances (­Logie et al., 2011; Loutfy et al., 2012). Understanding HIV-related stigma at the structural level and as intersecting with various other forms of oppression allows for the conceptualization of interventions that go beyond the individual level to address the broader social and structural context of HIV.

RACIALIZATION AND MIGRATION A previous Canadian study identified experiences of higher levels of HIV-related stigma among Black WLWH (Loufty et al., 2012). This reveals the embeddedness of racist stereotypes with HIV related stigma and highlights how HIV discourses are intimately intertwined with racist stereotypes that ­position Black women as promiscuous, dangerous, and a threat to society (Farmer, 2001; Patton, 2002). Moreover, WLWH from African and Caribbean communities face the consequences of stigma within their own communities, in part because of the stigma associated with HIV and how this is perceived to shape the marginalization of African and Caribbean newcomers to Canada more broadly (Greene et al., 2010; Krüsi et al., 2017). Ayomide’s story brings to light the complex intersection of HIV-related stigma, race, poverty, gender, and the negotiation of HIV disclosure in intimate relationships in shaping the lives of

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newly immigrated and racialized women in Canada (Krüsi et al., 2018). Ayomide is a woman in her early 40s who had moved to Canada from West Africa after living through years of civil war and displacement. She came to Canada with her child, who is unaware of her diagnosis. At the time of our interview they were still getting used to life in Canada and Ayomide and her child faced significant economic hardship because of high housing costs, which resulted in Ayomide often not being able to afford food, especially not the foods her child was used to eating in their home country, or warm clothes for winter. Ayomide lives with her child in shared accommodation to save on rent. Ayomide faces significant barriers to employment that are related to racism, being a single parent, and her health status. On top of the costs of daily living for her and her child, Ayomide is now also faced with the prospect of repaying the immigration loan provided by the Canadian government that covered the travel and medical exam costs accumulated as part of her immigration to Canada. Additionally, the intersection of social isolation and HIV-related stigma and discrimination make it very hard for Ayomide to build a support network (Krüsi et al., 2017). She is worried that her roommates will discover her HIV status by finding her antiretroviral medications. Ayomide does not want her roommates to know that she is living with HIV because she fears stigma and discrimination. She made explicit reference to the colour of her skin and how the combination of being racialized in Canada and living with HIV would expose her to significant discrimination among her small group of acquaintances and beyond and pose further barriers to employment and discrimination towards her child in school. Indeed, on the day of our interview, HIV disclosure was at the forefront of Ayomide’s mind. Her partner of a few weeks had recently found her HIV medications and threatened her with disclosing it to her roommates. Ayomide, on the advice of a nurse, had not yet disclosed her HIV status to her partner. As required by law, her HIV viral load was low and they had used condoms. Regardless, she felt very scared because of the abuse and threats by her partner after he discovered her HIV status. Well he [my partner] caught me with the medicine ... He asked, I explained, but he got so annoyed. He threatens me every day. It’s not good ... He abused me too much ... So he wants to do something bad to me because I didn’t tell him. So I said, “Well we were using condoms” ... He told me that he was

going to tell my friends [Ayomide’s roommates] ... So I don’t sleep, it’s today, you see ... He said he will disclose the secret to my friends. All this stuff. Insulting me every day and night: “Prostitute – Are you

a stripper? How did you get the sickness?” So that’s it. So this, I’m experiencing in Canada, here now, it’s not easy. It’s not easy for me now, no.

Because Ayomide was able to negotiate condom use and her viral load is undetectable she is not required by law to disclose her HIV status to her partner. However, the law that criminalizes HIV non-disclosure, except when a condom is used and the person has a low viral load, nonetheless exerts significant pressure and fear in relation to the negotiation of male condom use, as well as far beyond a sexual encounter by evoking fear about prosecution, child custody loss, and eviction from her shared apartment (see also Krüsi et al., 2018). The nurse gave me almost half bag [of condoms]. You see, because she knows I’m a Black, and maybe

she don’t want me to get a partner here. I have to be very careful. She told me that. She told me that

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Ayomide interpreted the nurse’s advice about the legal duty to disclose her HIV status to sex partners unless a condom is used and her viral load is low, as a warning not to seek out a sexual partner in Canada. Recent Canadian research has highlighted the association between sexual inactivity and dissatisfaction among WLWH in the context of growing social, legal, and public health surveillance (Kaida et al., 2015). However, more work is needed to tease out how these contextual factors shape the sexuality of WLWH. Ayomide, in this context, also references the colour of her skin, indicating that she interpreted the nurse’s information regarding the legal context of HIV disclosure in Canada also in the context of racial stereotypes (Farmer, 2001; Patton, 2002), thereby highlighting the importance of understanding how this law may differentially shape the experiences of various subpopulations, such as newly immigrated, racialized WLWH (Krüsi et al., 2017).

CRIMINALIZATION OF HIV NON-DISCLOSURE The criminalization of HIV non-disclosure exemplifies one clear way in which HIV-related stigma is operationalized at a structural level. Canada stands out globally in its assertive approach to criminalizing HIV non-disclosure, where using a condom or having a low or undetectable viral load is not sufficient in itself to exclude criminal liability for not revealing one’s HIV status to a sexual partner. This is the case, despite the fact that the risk of HIV transmission, ­under these circumstances, is extremely low (Milloy et al., 2012; Loutfy et al., 2014). In Canada, HIV non-disclosure is most commonly prosecuted as aggravated sexual assault. This constitutes one of the most severe charges in the Canadian Criminal Code and carries a maximum sentence of imprisonment for life and mandatory registration as a sexual offender. In a positive development, the Canadian government in December 2018, issued a federal prosecutorial directive limiting HIV non-disclosure prosecutions if the person maintained a suppressed viral load, used a condom, engaged in oral sex only, or was taking anti-retroviral medication as prescribed (Department of J­ustice Canada, 2018). However, it is only binding in territories under federal jurisdiction including Yukon, Nunavut and Northwest Territories. A parliamentary committee recently r­ eleased a report that recommends limiting HIV prosecutions to actual transmission only (House of C ­ ommons Canada, 2019). If implemented promptly, this would reduce the number of HIV prosecutions in Canada but stops short of criminalizing intention to transmit HIV, which UNAIDS recommends (Timberlake & Eba, 2014). The existing social science and epidemiological research on the criminalization of HIV non-­ disclosure has focused primarily on PLWH experiences and understandings of criminal laws related to HIV exposure or transmission and the relationship between such laws and sexual risk behaviours (Burris et al., 2007; Dodds, 2008). Other work has highlighted that the application of the criminal law disproportionately impacts marginalized PLWH, and that the criminalization of HIV non-disclosure can exacerbate HIV-related stigma (Adam et al., 2014), interfere with access to HIV testing (O’Byrne et al., 2013), and complicate relationships between health

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care providers and PLWH (Mykhalovskiy, 2011; Patterson et al., 2015). Despite frequently being represented as a law that protects women, the criminalization of HIV non-disclosure constitutes a form of gendered structural violence that exacerbates risk for interpersonal violence and fear of prosecution among WLWH, and changes the power dynamics in sexual relationships (Dodds & Koegh, 2006; Galletly & Dickson-Gomez, 2009; Krüsi et al., 2018). For example, when a male partner refuses to use a condom, WLWH find themselves in a double bind where they either risk violence and rejection if they disclose their HIV status, or they break the law and make themselves vulnerable to prosecution (Krüsi et  al., 2018). Given these significant shortcomings, HIV disclosure should be framed as a social justice and public health rather than a criminal issue, and laws should focus on the protection of the rights of WLWH, promote equality, guarantee sexual and reproductive rights, and ensure access to essential services and privacy (­Allard & Symington, 2014).

VIOLENCE AGAINST INDIGENOUS WOMEN AND THE ONGOING LEGACIES OF COLONIALISM As noted above, Indigenous women bear a disproportionate burden of HIV risk in Canada. In 2016, over 30 percent of all HIV cases among women were among Indigenous women (Bourgeois et al., 2016). This is the case despite the fact that Indigenous women make up only 1 to 2 per cent of the general Canadian population (Statistics Canada, 2016). The complex vulnerabilities to HIV that Indigenous women in Canada face are closely linked to the historical context of Indigenous peoples in Canada, including the legacy of colonialism, racialized policies, forced removal and displacement from their land and home communities, and the devastating impact of disconnection from traditions, spirituality, and culture (Browne & Fiske 2001; Bourassa et al., 2004; Varcoe & Dick, 2008). In Canada, the structural violence of colonial policies and historical trauma, including the residential school system and child welfare policies, continues to shape the lived experiences of Indigenous women and shape their vulnerability to and lived-experiences of HIV (Bourassa et al., 2004; Culhane, 2003; Duff et al., 2014). Jane’s story exemplifies some of the struggles many Indigenous WLWH face and how relationship conflict, violence, and child welfare policies can shape the health and well-being of WLWH. Jane has been living with HIV for over a decade and came to British Columbia soon after she was diagnosed with HIV while living in her rural home community. For the first six years of living in Vancouver, Jane was homeless and was not connected to HIV care. She is now living in a supportive housing program. Jane’s Indigenous roots form an important part of her current physical, emotional, and spiritual well-being. She smudges her place regularly, a ritual used to purify or cleanse negative energy from a place. Jane would like to attend more sweat lodge ceremonies (ceremonial steam baths and prayers), which currently are hard to access for her because of a lack of transportation. While growing up, Jane was not allowed to learn her traditional language, and she is now contemplating finding a way to learn the Indigenous language of her parents. For Jane, taking her HIV medications is a continual struggle. At the time of our interview Jane was not taking HIV medications and her viral load had crept up again. For Jane, adhering to her

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medications is difficult when there is emotional turmoil and conflict. Currently, Jane told us that conflict in the relationship with her partner plays an important role in shaping her adherence to HIV medications and focusing on her own health. Below is an excerpt from a qualitative interview with Jane in the summer of 2015. A: So you’re saying that you have stopped taking your meds. Was there anything in particular going on that contributed to that?

J: Yeah, I was stressed out for a bit. Some relationship problems ... I was fighting all the time with my

boyfriend. Yeah, my mind wasn’t ... there. I’m too busy thinking about how to make things better

with my boyfriend. Not thinking about my own health. I shouldn’t do that, right. Because ... I’m my number one. If I’m not well, then chances are nothing is going to be well, right.

Intimate partner violence has consistently been linked to HIV risk among women (Li et al., 2014). Similarly, relationship conflict and intimate partner violence have also been demonstrated to impact the biological outcomes and engagement in care for PLWH, where being threatened by a partner was associated with a lower CD4 count, a detectable viral load, and reduced engagement in HIV care (Schafer et al., 2012). In Canada, Indigenous women experience rates of violence 3.5 times the rate for non-Indigenous women (Amnesty International, 2014). The violence against Indigenous women has deep roots in colonial policies, racism, marginalization, and poverty (Oliver et  al., 2015; Varcoe & Dick, 2008). Decades of government policy have impoverished and broken apart Indigenous families and communities, leaving many Indigenous women at increased risk of violence and murder. Deep inequities in living conditions and the structural violence of discrimination in the provision of government services, such as child welfare services and the criminal justice system, have pushed many Indigenous women and girls into precarious situations (Bingham et al., 2014; Duff et al., 2014; Oliver et al., 2015) and lie at the root of the grossly elevated numbers of missing and murdered Indigenous women and girls in Canada (National Inquiry into Missing and Murdered ­Indigenous Women and Girls, 2017). A few years earlier, Jane had stopped taking her HIV medications and struggled with criminalized substance use after Child and Family Services apprehended her newborn baby. When Jane became pregnant, she had not been using drugs for a number of years and was taking her HIV medications regularly as prescribed. After her baby was apprehended, Jane stopped taking her HIV medications and started using criminalized substances again to cope with her loss. A: And what were some of the reasons you stopped [ARVs] after you had [the baby]?

J: I just stopped taking them. I lost custody of [the baby] while I was in the hospital. I was just ready to

go home and the father came in and he was drunk, and he was supposed to be our ride home and I

just picked our daughter up out of the car seat, and he kicked the car seat. And the child and family services were right there, so they looked at me, and they’re like, “No, no, you’re not taking that baby home,” so I just stopped taking them [ARVs] after that.

A: That must have been really traumatic.

J: Yeah. [Pause] And I relapsed. After years clean. They put [the baby] up for adoption

The Intersecting Social and Structural Contexts of Navigating HIV Risk and Access to Care

In Canada, 48 per cent of children and youth in foster care are Indigenous, even though Indigenous peoples account for only 4.3 per cent of the Canadian population (Aboriginal Children in Care Working Group, 2015). In British Columbia one in five Indigenous children will be involved with child welfare at one point during their childhood (Aboriginal Children in Care Working Group, 2015). This disproportionate representation of Indigenous children in government care points to the continuation of racism and colonial policies in the treatment of Indigenous families in Canada. So for Jane, her status as an Indigenous woman and her violent and substance-using partner, in conjunction with a child welfare system that has historically been racially biased, significantly contributed to shaping her health and adherence to HIV medications. Previous work has indicated that motherhood for WLWH, given adequate social and structural support where needed, can be a positive experience, positively impact women’s self-­ realization and self-esteem, and give rise to a sense of normalcy (Barnes & Murphy, 2009; ­Finocchario-Kessler et al., 2010; Kennedy et al., 2014). Many WLWH have described motherhood as a reason to live and implement healthy life-sustaining behaviours, including adhering to HIV medication (Boehme et al., 2014). Jane’s experience characterizes how the intersection of colonial violence, partner violence, relationship conflict, and child welfare policies can shape the health and well-being of WLWH and can take away the potentially positive effects of mothering on the lives of WLWH. Her story highlights the importance of reforms to child protection services in Canada, guided by culturally restorative child welfare practices that support family-based care and provide enhanced support for parents to sustain the health and well-being of family units and communities.

CONCLUSION Overlapping systems of discrimination and subordination intersect to shape the lived experiences of women affected by and living with HIV. The presented case vignettes, based on our qualitative and ethnographic work, highlight the mutually constitutive relationships between marginalized social identities and structurally embedded violence that shape social and health inequities among women living with and affected by HIV. Biomedical advances alone have been unable to desocialize and depoliticize HIV (Moyer & Hardon, 2014). The vignettes bring to the forefront the multiple, dynamic, and interconnected ways in which subordination shapes women’s ability to negotiate HIV risks and their lived experiences with HIV. The understanding of HIV as shaped by intersecting social and structural forces is particularly important in the current funding context; many community-based HIV organizations have experienced significant funding cuts because of the conceptualization of HIV as a manageable chronic condition like any other that can be handled primarily through biomedical interventions. Funding and implementing community-led interventions and ensuring liveable social assistance rates and affordable, safe housing, as well as law reform to address the multidimensional and relational nature of overlapping systems of oppression, subordination, and criminalization, are the next crucial steps in increasing access to the HIV cascade of care among cisgender and transgender women in Canada.

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DISCUSSION QUESTIONS 1 Given the ongoing stigma associated with HIV, how can the important work of showing inequities (for example, for Black and Indigenous women) be balanced with the risk of deepening stigma for racialized groups? 2 Given the move to online sex work, the COVID-19 pandemic, and rising awareness of racism and racial violence, what key new challenges to navigating HIV risk and access to care do you anticipate? 3 What are the key social systems that require reform for more equitable approaches to HIV prevention and care? How do these systems interface and what are the related challenges?

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CHAPTER SIXTEEN

Social Transformation and Urban Regeneration: Well-Being and Women’s Marginalization in Community Contexts Judith Sixsmith, Ryan Woolrych, and Mei Lan Fang

The concept of well-being is ambiguous and multifaceted, proving difficult to conceptualize and measure, and being variously viewed as happiness, satisfaction, life fulfilment, and engagement. Despite conceptual confusions, well-being is integral to the UK Happiness Agenda, an agenda that is paralleled across Canada. Improving health and well-being has formed a central tenet of UK urban regeneration policy, whereby enhancing well-being through improvements to the environment, housing, and community is highlighted. Yet social transformations in health and well-being are difficult to achieve, particularly through urban renewal in areas of social disadvantage. This is problematic for women living at the margins of society, particularly at the intersections of gender, socioeconomic status, and ethnicity. The research presented here explores the well-being consequences of urban regeneration for women living in disadvantaged community circumstances, asking: In what ways can urban regeneration praxis transform the social and personal well-being of marginalized women in community contexts? An intersectional lens is applied, with the focus on three mid-life women of different ethnic origins, residency periods, and situations of social and financial disadvantage. Using a participatory approach, interviews, video diaries, and photo-voice methods were used to capture data, enabling the generation of rich, participant-led, nuanced information. Findings highlight how urban regeneration challenged the women’s sense of home and community. The intricacies, routines, and simple pleasures of everyday life grounded the women as members of their communities, reaffirming their identities and local social value. Faced with the power imbalances and professional elitism inherent in the regeneration, the women resisted social and environmental transformations that reduced their sense of personal and social well-being, and re-appropriated those places in their communities for themselves and their families. The research concludes that well-being is embedded in women’s experiences of home and community and is imposed on by the socio-structural progress of regeneration and structured through the lens of time and place. Lessons learned from this UK research are considered within the Canadian policy context.

Social Transformation and Urban Regeneration

BACKGROUND Well-being forms a central tenet of both UK and Canadian urban regeneration policy, whereby projects and initiatives aim to enhance well-being through improvements to the physical environment, housing quality/availability, and community (via social integration and inclusion processes) (Dickinson, 2005). Yet positive social transformations that are inspired by local community members and benefit those that are the most marginalized are often difficult to achieve, particularly in areas characterized by social inequities. Such inequities often progress along, among others, gendered, class, and ethnic lines and are characterized by difference whereby life chances for different women are compromised by the oppressive mechanisms of disadvantage. The creation of opportunities for both health and well-being through urban regeneration is a key aim, but without the financial, psychological, and social resources to realize such opportunities, achievement of opportunities for marginalized women can be unrealistic. Such achievements can be hampered by a lack of understanding of the multi-layered issues that affect women’s health and how health and well-being are impacted by the social, environmental, and political spaces in which women live their lives (Ussher, 2000). This is particularly the case for women in mid-life since much research effort to understand women’s health has historically, and more recently, focused on reproductive health (Gay, 2018; Usscher, 2000) leaving middle-older women’s health issues relatively under-researched (Koblinsky et al., 2018). Where women’s health has been centralized, research has tended to progress around specific illnesses, particularly women’s cancers (Gay, 2018), neglecting broader physical, mental health, and well-being issues. This means that everyday concerns of health, well-being and quality of life are not well understood, making it difficult to support women of lower socioeconomic class to develop or maximize their potential. This is important, as Sixsmith and Boneham (2004) argued, because women are often located as the health and well-being experts in their families and communities, ministering and guiding children, relatives and neighbours with advice and support. As such, women’s health and well-being occupy a wider social and political location and, as Roberts (1992) suggests, are a matter of public interest in shaping the health of the nation. However, it may be that the social status of marginalized women and their everyday life within the household can confine women’s ability to either access health care (Gay, 2018) or to live healthy lives within spaces and places characterized by poverty, poor education, and gender bias. Generally, such women are excluded from the decision-making forums, the policy debates, and the power domains that can better secure people’s health and well-being (Boneham & Sixsmith, 2006). Indeed, women shape neither the questions asked nor the answers given, which ensure equitable development and distribution of health and well-being resources, leaving women’s diverse health and well-being needs “unheard and unattended” ( Jacobson, 2018). In this context, it is particularly problematic to imagine ways in which transformations of the urban environment can be used as a force to improve health and well-being. New ways of thinking about and “doing” urban regeneration are required if such opportunities are to be maximized for all people, no matter gender or disadvantage, who live in areas of regeneration (Fang et al., 2018). To address this, the UK research presented here asks: How can urban regeneration praxis be transformative of social and personal well-being in community contexts for marginalized women?

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This is examined through a participatory case study approach using an intersectional lens in conjunction with the concept of place to explore how best to generate positive social transformation and increase women’s well-being through the urban regeneration process. Here, taking an intersectional lens refers to engaging with complexity, understanding the nuances and dynamics of social positionality, identity, and belonging and with respect to experienced inequalities (Sixsmith et al., 2019). This research offers lessons learned in the United Kingdom for the Canadian context. To facilitate cross-national learning, a brief review of UK and then Canadian policy in relation to urban regeneration is presented.

URBAN REGENERATION POLICY IN THE UNITED KINGDOM In the United Kingdom, historically, the concept of “regeneration” developed during the post-war period from 1945 to the 1960s where there was an urgency to rebuild war-torn towns and cities, in particular, inner cities and areas of financial and social deprivation (Bailey, 2012). Poverty within inner city areas was particularly problematic, signalled by damp, dilapidated housing, rising crime figures, and limited financial opportunities for many working-class families. A widely accepted and pioneered approach to regeneration stemmed from the white paper “Inner City Policy” (Spencer, 1979) and involved partnership building between different sectors, centred on fluid relationships and collaborative working. Regeneration focused on reducing social exclusion, improving housing and well-being, and reducing crime and anti-social behaviour; streamlining project and mainstream budgets; and expanding urban regeneration strategies beyond the inner city as much as possible (Bailey, 2012). To achieve positive social transformation grounded in principles of inclusivity and improved well-being, much emphasis was placed on active community involvement and engagement at local and neighbourhood levels, principles that herald community “empowerment” (Bailey, 2012). According to Bacque and Biewener (2013), “empowerment came to be firmly established within public policy discourse in the 1990s and is associated with reinventing government, social capital, communities, equal opportunity, responsibility, employment, inclusion, and citizenship” (p. 2198). In 2003, UK government policy incorporated the concept of “empowerment” in urban regeneration strategies as a way of promoting community-driven enterprises through various initiatives and mechanisms to redistribute the power of change from professionals to community residents (Communities and Local Government [CLG], 2008), as indicated and funded through the UK Empowering Communities Programme (Scottish Government, 2019–2020). What was less well articulated was how the notion of empowerment could work in the context of social and economic disadvantage, concerning people who view authority with some suspicion and who have never been placed in positions of negotiation with powerful officials. In short, in-depth consideration of the impact of socio-structural disadvantage and multiple years of marginalization on local communities and the people who lived in them was not fully articulated. Despite this, local communities were encouraged to contribute as partners in this transformative process through the adoption of roles such as strategic and planning consultants, members of regeneration boards, and participants facilitating the delivery of projects and other services.

Social Transformation and Urban Regeneration

Unsurprisingly, tensions around community participation and partnerships became apparent, and regeneration professionals contested the distribution and dynamics of power, the roles and responsibilities of residents, and the value of community involvement in achieving regeneration objectives (Evans, 2008). Despite challenges over the last decade, UK community organizations have persevered and supported community groups to translate local knowledge into regeneration practice, influencing local councils and other local forums. At the political level, neoliberal parties such as New Labour continued to locate grassroots community participation as a platform for social inclusion and civic mobilization (Bailey, 2012). The political agenda advocated, despite professional resistance, strong community involvement in urban regeneration projects to facilitate locally acceptable financial decision-making processes and to contribute substantially to program evaluation (Dargan, 2007). Undoubtedly, urban regeneration initiatives have positively transformed some highly disadvantaged areas across the United Kingdom (Tallon, 2010), moving further towards achievement of United Nations Sustainable Development Goals (SDG’s) on health and wellbeing (SDG, 3), gender equality (SDG, 5) and sustainable cities and communities (SDG, 11) (Gov.UK, 2021). However, the translation of policy into practice has been difficult to achieve. This has been hampered by the difficulties of inter-professional dynamics and difficulties in redistributing real power to local people in regeneration areas (Woolrych & Sixsmith, 2013a, 2013b, 2017), often resulting in an agenda for urban regeneration that has progressed without effective community involvement and has pitted professionals against community members. This situation has continued in the face of more recent place-based policy pushing the localism agenda (Alcock, 2010; Kisby, 2010) in which volunteerism and local involvement were heralded as the cornerstones of inclusive communities built to develop and sustain well-being. Largely leaving community residents out of regeneration processes has produced a physical and an entrepreneurial focus on regeneration that emphasizes the beatification of the environment, erection of iconic monuments, renewal of housing stock, and incentives for new businesses. What has been less attended to is the mobilization of local knowledge to create community spaces and places to ensure that regeneration creates positive well-being outcomes for local people. In fact, physical and economic regeneration has been emphasized at the expense of social and community well-being (Woolrych & Sixsmith, 2013b, 2017).

URBAN REGENERATION POLICY IN CANADA In comparison with the United Kingdom, Canada has a relatively new urban regeneration history with a thin policy record (Bradford, 2004). During the 1990s, when British and American regeneration innovations became mainstream, Canadian federal and provincial governments were criticized for the lack of investment in policies that integrated community perspectives and understandings (Andrew et al., 2003). Criticisms emphasized the top-down unilateral decision-making process, which lacked sufficient engagement with local and community challenges (Organisation for Economic Cooperation and Development (OECD), 2002). Without community involvement, opportunities to develop quality city living were reduced, constituting a problem when 80 per cent

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of the Canadian population lived in cities (almost 82 per cent by 2020) and 51 per cent in major metropolitan areas (Bradford, 2004). The structure of the Canadian economy has shifted dramatically over the years, leaving major social problems rooted within larger cities and growing class and income disparities within urban labour markets (Bradford, 2004). Such problems were thought to have stemmed from increasing discrepancies between municipal responsibilities and the necessary and available policy resources to act or contribute to resolving these issues on a macro scale via federal government mandates (Andrew, 2001; Federation of Canadian Municipalities, 2001). Paralleling the situation in the United Kingdom, there were growing concerns of poor partnership working between sectors, and scarce evidence of a coherent agenda, integrated workings, and the recognition of the significance of space and place in relation to well-being ( Jenson & Mahon, 2002; Roy &Langford, 2008). Research highlights the importance of supplementing community-based public policy actions with macro-level measures to enable essential social and financial supports (such as employment, health, education, childcare, and housing) for individuals and families ( Jenson & Mahon, 2002). These actions demand socially and culturally sensitive and holistic approaches, which include grassroots strategies based on local knowledge built from the ground up (Alonso et al., 2020). Again, as in the United Kingdom, and despite scrutiny of the lack of community integration and input by upper-level governments (Bradford, 2002), community-based organizations struggled for acknowledgment of their contributions to improved physical inner-city spaces and to have their voices heard in social policy initiatives (Phillips, 2006). Even when community perspectives were integrated, their voices were not influential within policy developments and the design phases of regeneration projects. These were highlighted as major limitations to place-based policy in Canada (Bradford, 2004). In the early 2000s, urban regeneration initiatives have shifted towards “new localism research, municipal and community sector advocacy, and policy experimentation at all levels of the federation” (Bradford, 2004, p. 4). Here, in Canadian policy, communities are seen to have the capacity and knowledge to formulate their own place-based frameworks that offer combined national guidance and support in conjunction with local priorities and community-driven projects. Furthermore, at the federal level, the government introduced initiatives that were noted as “the most ambitious Canadian experiments in place-based policy,” which included, “vertical and horizontal collaborations; simultaneous attention to the four pillars (economic, social, environmental, cultural) of place quality; and context-sensitive application of the big macro policy levers” (Bradford, 2008, p. 6). Similar to the UK development of place-based policy and its link to well-being, the location of well-being in ground up development of community places is clearly envisioned if not yet fully achieved.

Regeneration, Gentrification, and Inequity In reflecting on shifts in social transformation, policies, and initiatives in both the United Kingdom and Canada, the key point identified is the importance of including local communities in all stages of urban development. This strategy was designed to ensure democratic mandates for

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transformation and avoid regenerations that exacerbate disparities between areas and people based on class, race, gender, age, ability, religion, and sexuality. According to Walks and Maaranen (2008): Gentrification in the form of “neighborhood revitalization” is increasingly touted as one way of decreasing the social exclusion of residents of poor inner-city neighborhoods and of increasing levels of social mix and social interaction between different classes and ethnic groups. (p. 293)

However, rather than focus on the development of social and personal well-being through revitalization of urban areas, urban regeneration has focused primarily on the restoration of physical and business environments. Indeed, there is evidence to suggest that regeneration has increased difference and inequity between social groups by enhancing commerce and housing values (Bélanger, 2012). In this way, such transformations facilitate increased fiscal revenues, which can result in those with less financial resources being unable to continue to live in the local area, and a process of gentrification occurs whereby expensive shops and wealthier residents become the norm (Bélanger, 2012). As local areas become more attractive to private investors, tourists, and more affluent residents, there are, frequently, negative consequences for long-term residents and socially disadvantaged persons – namely, loss of affordable housing, income gaps, decreased levels of social diversity (Barnes & Hutton, 2009; Rose, 2010; Skaburskis, 2012), disrupted social networks (Atkinson & Wulff, 2009), and challenges to sense of community and cultural identity (e.g., where cultural enclaves have been broken up by forms of gentrification) (Alexander, 2011). Processes of urban regeneration and linked gentrification have the potential to disproportionately affect working-class women who typically experience lower salaries and exclusion from the labour force, depend on their social networks for practical and emotional support and spend much time in their local community (as a setting to support both their livelihood and their everyday family-oriented roles). For example, for working-class women in the United Kingdom, urban regeneration policies and initiatives can destabilize and devastate existing local community networks and supports that some women rely on to help manage their marginalized positions (Gosling, 2008). On the other hand, the revitalization of urban areas can bring women new opportunities for employment, social enhancement, and independent lifestyles. Either way, urban regeneration can have a strong impact on the lives of women as Kern (2010) argued, Home ownership, condominium security, and the interconnectivity and freedom of choice found in

city life are held up as ways for women to achieve independence and autonomy. Women’s freedom in

the central city is thus reified as a symbol of successful revitalisation, a symbol that blinds us to other pressing concerns about inequality, poverty, and marginality in the city. (p. 375)

Moreover, research has indicated that processes of urban regeneration have privileged the male perspective (Fainstein, 2014). Frequently, regeneration schemes and subsequent development efforts ignore spaces and surrounding environments (e.g., parks, playgrounds, schools), as well as those social infrastructures where lower income women’s lives are focused. Research in the United Kingdom and Canada also indicates that urban regeneration policies often fail to consider the ways in which women experience poverty and social exclusion. For example,

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the synergetic effect of gender, age, poverty, and social exclusion are profound, with lone mothers and older women often situated at the core of poverty, yet regeneration policies have continually neglect the differential experiences of women (Flaherty et al., 2004). One explanation is that regeneration policies and decision-making processes continue to be dominated by men in positions of power who prioritize the economy and labour market rather than social welfare issues of working class women, some of which pertain to childcare services and housing (Brownhill, 2000). The research presented in this chapter problematizes the ways in which urban regeneration praxis can be transformative of the social and personal well-being in community contexts for marginalized women of lower income, working class, and ethnic origin. Here, three middle-age women of different ethnic identities construct their understandings of well-being in the context of a disadvantaged UK community undergoing urban regeneration. An intersectional lens (Collins, 2000; Collins & Bilge, 2020) is applied in the analysis where gender, class, ethnicity, and disadvantage, viewed through hierarchies of power and oppression, are seen to structure experiences of regeneration. In addition, research suggests that “place” is important to consider if understandings of experience are to be fully contextualized (Sixsmith et al., 2019). People form meaningful attachments to places based on the histories and events associated with the place and time spent there (Lewicka, 2008). Taking this further, Proshansky et al., (1983) argue that identities and places are mutually constitutive through physical and emotional attachments. Since people’s identities are bound up in place and because people develop different senses of place and place attachments, places can act to structure social and cultural divides and hierarchies, and these can be made visible in the disruptions characteristic of regeneration areas (Foroudi et al, 2020; Jones & Evans, 2012). The interlinking of place, history, identity, and power relations and the propensity of places to entrench historical and cultural forms of oppression creates an interesting backdrop to the ways in which urban regeneration can operate to reinforce socio-structural oppressions (Sixsmith et al., 2019). Such identities, positionalities, and oppressions are grounded in the lived experiences of residents in areas of urban regeneration, where their experiences and voices are at times prioritized or (most often) silenced with respect to decisions made concerning the regeneration of their communities. Such decisions and the action based on them to regenerate places can have far-reaching effects on well-being. In the current study, well-being is understood from the perspective of three women participants in a participatory case study project, framed through the intertwined notions of hedonic and eudemonic well-being (Shah & Peck, 2005). Hedonic well-being draws upon the field of positive psychology, which promotes the pursuit of pleasure and experiences that generate positive affect (Kahneman et al., 1999). Eudemonic well-being suggests that people are motivated by the desire to actualize human potential, through personal fulfilment and development (Ryff & Singer, 2000). This framework was used to help position well-being with respect to the women’s accounts of everyday life but did not overshadow the nuances of experience expressed in their stories of the emplaced regeneration that changed their lives.

THE PARTICIPATORY CASE STUDY DESIGN The area of regeneration was located in the North of England in some of the most socially deprived communities in the country, undergoing various phases of regeneration and change between 1999

Social Transformation and Urban Regeneration

and 2014. Local residents were recruited through relationships that the project team developed within the regeneration area. During the course of the research, the researchers operated on the principle of proximity and familiarity to encourage residents to interact with researchers on a daily basis. Co-author Woolrych worked from an office space in the community and spent time engaging with resident groups in various community locations. This principle of “being there” in the community (Sixsmith et al., 2003) provided rich observational data while generating local trust in the research. All participants lived within the area of regeneration, and length of tenure varied (4 to 72 years, mean 14.2 years). In all, 107 residents were involved in the overall project, including the completion of well-being and quality-of-life questionnaires, semi-structured interviews, focus groups, and observations within public spaces. Nine residents were keen to engage in more participatory ways with the research team, including by joining a research advisory board. The three women who constituted the case studies here were drawn from a wider sample of residents interested in capturing their daily lives and experience of community. While not suggesting the representativeness of women in the community, these women’s lives are typical of women’s lives in such communities, being built around family and located in neighbourhood spaces. The three women had not engaged with research before and it was imperative to enable their voices to be heard through the data generation instruments. This necessitated participatory working with the women to design the research in ways they understood and felt comfortable with. All three women were keen to capture their experiences using visual methods. They documented their sense of place and well-being using video diaries and/or photography in conjunction with interview sessions to make sense of their visual data. In recent years the application and development of visual approaches (especially photography and video) has gained credibility with social scientists as a way of capturing individual perspectives and experiences (Pink, 2020). Visual methods create possibilities for new forms of expression and interpretation, going beyond traditional qualitative research techniques, where imagery provides a medium for people to reflect upon their everyday experiences and articulate the taken-for-granted experiences of everyday life. As a participatory tool, visual methods offer the potential to empower individuals or groups who traditionally feel voiceless, disenfranchised, or excluded from mainstream activity (Pink, 2013) and people to tell their stories in ways they may not be able to put into words (Reavey & Johnson, 2008). All participants were provided the freedom to choose how (video/camera), where, and when to document their everyday experiences of living in the regeneration. Portability, functionality, and usability of the equipment was discussed, and issues of comfort and inconspicuousness drove their choices. This was important given Prins (2010) findings that use of visual methods in a troubled community can engender singling out residents for suspicion and rejection. Data collection took place over a six-month period, during which one-to-one meetings with the researcher were undertaken every two weeks to feedback on progress and upload data from the recording devices. No limits were placed on the data collected. (time/duration/ location). The research yielded an average of 63 minutes of video time and 24 photographs per participant. The collaborative approach was applied to the interpretation of the visual imagery, and the participants were asked to document their own stories. The women took the lead in explaining how

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well-being and sense of place were interlinked and disrupted through regeneration processes while the researchers asked questions adapted from a study by Radley and Taylor (2003): 1 What is in the image/video? 2 What is the focus of the image/video? 3 Why has this scene be pictured/filmed? In what way is it important to you regarding sense of place and/or well-being? 4 Explain the feelings that this image/video sequence evokes. 5 Explain the memories that this image/video sequence evokes. As such, the women played their video, pausing where appropriate and discussing their thoughts and feelings about what they had captured. In addition, photographs were laid out, simultaneously visible, on a flat surface, and the women talked through the meaning of each photograph in an order of their own choosing while critically applying their experience to research notions of regeneration and well-being. The sessions were recorded and later transcribed. A narrative approach to data analysis was used in which the video and images were translated into an account of the regeneration process and its impact on well-being. This approach is akin to the Wang et al.’s (2000) photovoice approach, which emphasizes critical dialogue, empowerment, and participation. Reavey and Johnson (2008) described the process as fundamental to the development of an external and contextual understanding of the data in which the visual is “never concrete and cannot stand alone, outside of the meanings and reasons given by participants as to the way the image has been made visible in the first place” (p. 311). Participants were freed to create their own focus, generate meanings, and co-construct with the researcher interpretations of the images in relation to their lived experience (Radley et al., 2005). Fifteen face-to-face analytical sessions (1–3 hours in duration) were conducted with the three women in their own homes until they were satisfied with the imagery and accompanying narrative. These case studies are presented in the following sections of this chapter.

Ethics Ethical approval was granted through the Manchester Metropolitan University ethics committee. All participants were provided with an information sheet and asked to sign a consent form. Data storage and handling followed the principles outlined in the British Sociological Association of Ethical Practice guidelines provided by the Visual Sociology Group (British Sociological Association, 2006). Participant identity has been protected with the use of pseudonyms, and participants were briefed and debriefed before and after their participation in the research. The notion of protection from harm was attended to, and the researchers supported participants if any upsets or difficult issues arose. Where this required more support than researchers could offer, they sought to connect participants with professional support organizations. Researchers were also protected through the development of a buddying system and a lone researcher policy. An exit strategy was produced so that participants were considered when the research terminated. This ensured that participants were given their visual and verbal data and a summary of the findings, and were able to take part in future research where requested.

Social Transformation and Urban Regeneration

FINDINGS Sue’s story: Sue is a 42-year-old woman who has lived in the regeneration area for over 25 years. Sue is employed part-time, has been married for 16 years, has two grown up children, and lives in a rented property in the centre of the regeneration area. Sue chose to document the impact of the regeneration on her sense of well-being through video diaries and photography, which captured images of housing change in the local area. Three years previously, Sue had moved house as a result of the regeneration’s housing market renewal program, the aim of which was to replace old housing stock with new homes. At 42, Sue felt that the enforced process of removal failed to support her as a “middle-aged woman” who was already “set in her ways” and who had built community routines to help manage the important relationships in her life. We used to have parties in each other’s back garden, take turns you know. We would go and have our

hair done at Margaret’s, maybe just go around for a cup of tea. Sometimes there would be a group of us. We’d do it at the same time every week. It was something to look forward to.

Sue felt simultaneously “stretched” financially and socially and that her sense of home as haven and refuge was challenged by the move. The lifetime of symbolic and meaningful events (childhood, marriage, divorce) associated with her former home elicited feelings of emotional attachment. Sue felt that this intimate connection with place was stripped from her when she was forced to relocate as part of the compulsory purchase orders brought about by the regeneration process. For Sue, home was deeply rooted in personal memories and shared experiences, fundamental to identity and belonging: The house was a place we grew up. It was passed from generation to generation. It was a place where things happened. Birthdays ... people got married. Memories ... good memories. Positive experiences.

Moreover, a strong sense of home was reflective of having opportunities for social participation, the ability to sustain collective identity, and feelings of safety and security. Here, the context of activities, historical connections, and the identifications and sense of belonging within the street were important in linking her as a person to her community, a familiar protective environment which was constructed through strong social interdependencies between local residents. Sue deemed the matrix of social networks particularly important in her community as they represented the reciprocal and trustful relationality, which gave her a sense of security, as well as social status. In her street and among her family, friends, and neighbours, Sue felt that she had a certain social standing and influence, a social wealth that stood in marked contrast to her lack of material wealth and the external stigmatization of living in a deprived community. This social wealth provided a source of agency and “visibility” within the community: Home means you feel a bit more secure, if you know your neighbours then you know that “Yeh, if I’m gonna be out all day” there’s a good chance that my neighbours gonna look over my house and make sure everything is ok. You don’t feel invisible.

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Sue spoke of mutual support networks of friends and neighbours who acted as a buffer against threats brought about by physical ill health, substituting for formal care supports. Her networks acted as a protection against poor health, social isolation, and social exclusion: That social stuff was important in my life. It is that neighbourliness. It is about one neighbour going over to another neighbour when they are poorly and saying, “Look, I’m going to the shops, do you want me to pick up some shopping for you?”

The regeneration practices failed to engage with the notions of local identity, the social status in disadvantaged communities, and relational support that Sue highlighted as important to her well-being. Rather, the focus of regeneration was placed on physical transformation. Unsightly old housing stock was erased in favour of bright new builds: aesthetic beauty was touted as the way to improve personal, social, and community well-being. For Sue, the new housing stock failed to articulate the everyday ways in which she, as a woman, negotiated home and community. Moreover, her lack of voice within the process left her feeling lost, placeless within the community she had lived in for much of her life. The emotive language used to describe this underpins her sense of disempowerment: They just came in and bulldozed our homes. The council thought that change was for the better, that because we were getting a new home but no actually. Well it disrupted all these friendships and community networks. People were displaced around the city. Some people we didn’t even see again. Some chose to hang on and hope for the best. None of us knew what to do.

For Sue, meaningful places in the neighbourhood were transformed into meaningless spaces leading to a reordering of community in ways that did not reflect her or other local residents’ personal experience or social needs. Sue suggested that the lack of involvement of residents in the design and consultation process highlighted disregard for local knowledge in preference for professional regeneration expertise. This positioned Sue and fellow residents as inferior beings with little to offer, and their homes and community were seen as secondary to the performance indicators used by professionals to drive the regeneration: They [regeneration professionals] just fobbed us off. They don’t tell us anything. I think they must think

that we’re stupid or daft. It’s just ticking boxes for the regeneration team. They have been told that they

have to build so many thousand homes so they just sit there and tell us what is good for us. They’re building it and that is the end of it.

The regeneration are not listening to what we say. They come in, tell us one thing and then do

another. We sent them a letter detailing our complaints. We know where that is. It’s in the bin. I don’t think they’re listening to people today.

Sue recognized the power hierarchies through which community regeneration was structured, clearly outlining how managerial decision making was disconnected from the realities of community living translated through regeneration professionals whose roles were to action such decisions,

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not work with residents to build better communities. Resident knowledge and desire were subjugated to the machinery of local government. Without a voice in the process and experiencing a disregard for local knowledge, a lack of understanding of the meaning of home and community, and a mistaken belief that transforming unsightly physical environments would translate into heightened well-being meant that some local communities “hunkered down,” gave up trying to give voice to their experiences, and became socially distanced: People around here have turned in on themselves a lot more. They think they can’t do anything because everything in the past has just been shouted down. They don’t want to go out of their front doors.

The community used to be a lot more responsive. Now people just operate within their own homes.

People are more isolated and don’t bother. I don’t think people feel that they can change things as much as they used to. There are no opportunities and I think there’s the feeling that it won’t make any difference.

What is interesting here is the way in which Sue contrasts a more active, engaged and collective pre-regeneration social environment with the current fragmented, passive, and disempowered situation. This is certainly counter to regeneration objectives to create places that provide more social and economic opportunities and improve well-being. However, Sue also talked of the motivation of such experiences of disempowerment and how these could be translated into solidarity and collective action. She described how resistance to imposed injustices developed into “communities of resilience”; challenging the threat they saw to their everyday lives, their homes, and their social ties. This activist, cohesive community re-created the supportive ties Sue had lost in the regeneration process to maintain valued places within the local area: It is hard not to feel a sense of injustice when we are being ignored. We are not valued by the people that are responsible for bringing about change. That’s why we have to do the things ourselves and group

together in order to get things done. We are not praised for coming together, 20 of us women to get things done in the local community.

Action, in Sue’s terms, was not based on demonstrations of solidarity, marches, or resistance campaigns. Instead, resistance was located in cooperative “doing.” Local women taking the initiative to sort out the “little” things in their communities that make a difference to living in the street, walking to the shops, and enjoying clean and tidy parkland. We keep it nice ’round this area. We know that nobody will help us. It wouldn’t be so bad if they [regen-

eration professionals] said we are looking into it [redeveloping social ties] but we never heard another thing. They are not going to do it so it’s left to [residents names] and myself. We work together and we get things done.

Without the financial wherewithal to mount large-scale resistance, these financially disadvantaged women banded together to make a difference to the things they cared about at their location as middle-age in the life course: family, the local streets and services, and leisure facilities. The emergence

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of stronger support networks in adversity confirms that women marginalized within the regeneration system can resist social injustice to craft more cohesive communities despite their lack of social and material advantage. In this case, resistance spawned personal and social agency to effect change. In this way, local women, Sue included, challenged the power imbalances and oppressions formally imposed on them and became more enabled to change their life in positive ways.  Souadd’s story: Souadd is a 45-year-old female migrant from Iraq who had lived in the regeneration area for 18 months with her 16-year-old son. A key objective of the regeneration was to attract different ethnic groups into the regeneration area to create a “social mix.” Souadd discussed the impact of integrating into the regeneration area on her and her family’s well-being, describing the intersections between gender, perceived class, and immigrant status. Souadd described the difficulties she experienced in terms of integrating into the regeneration area, feeling disengaged from community life, and experiencing being “othered” as a recognized and recognizable “outsider.” Her experience of living within the regeneration area (captured in her video imagery) was almost entirely dominated by her home environment. Souadd felt threatened by the outside environment, her vulnerability reinforced by experienced victimization: I have had problems when I walk around ... people make it very difficult for me ... I have hijab, you see

(points to hijab) ... and the (local) boys pull on (my) hijab. You see its open (pulls open hijab to reveal

face and hair) ... and they come and open. And so I call the police and the police come and speak and blah, blah, blah ... Another day somebody came with a ... stone ... and broke my window. Police come

and tell me to take picture ... what can I do? They are mean people. I am a woman. If you say bad word it is painful to me.

Frightened and vulnerable in a hostile community, Souadd curtailed her own freedom, venturing out only during limited daytime hours and for short periods. This sense of fear and isolation reduced her physical and mental well-being as she refrained from engaging in outdoor activities: After 4 or 5 in the evening I do not walk. I do not go out. I will not go out. Cannot go out. I know that there might be on the streets. I am not sleeping.

Socially isolated, unhappy, and fearful, she described her sleeplessness in terms of the regeneration whereby the deteriorated physical street emphasized her feelings of personal threat. Souadd’s photographs and video diary data captured the isolation of her life where she would look out from behind her curtains; home became a source of comfort and ontological security and her “place to hide.” Souadd contrasted her current experience of lack of community and the oppressions experienced in her hostile dealings with local people, with the kindness and mutual ties based on trust and reciprocity she experienced in Iraq: Here, everybody closes their house, nobody speak with nobody. Here, nobody says hello or hi. Back home (in Iraq), if I need anything, I go to my neighbours and “So sorry I have no ... can you give me

Social Transformation and Urban Regeneration tomatoes or potatoes or water or...,” they say, “No problem.” This is normal. Very kind. If I have no

money and my money is finished, you say, “Can you borrow me 5 pound or 100 pound,” they say “Yes.” Here, no.

Souadd felt that community ties were vital to the creation of strong and vibrant places, and important in sustaining psychological and emotional well-being by providing support in times of need and buffering stress. Here, the notion of community “as family” contrasts starkly with the regeneration community “of fear”: Over there (in Iraq)  ... all the streets and all the roads are family ... everybody know you ... and you

have them in the home when you are eating and you have party ... if you have sad day, everybody help you but not here.

Confronted with an outside environment perceived as unfamiliar and unsafe, Souadd constructed strong attachments within her home with specific objects, particularly those reflecting cultural, religious, and family ties. These anchored Souadd to happy times and places and enabled her to retain a positive sense of identity. Souadd used familial and religious components of her life to counteract the negative aspects of well-being encountered in the regeneration area. In this, she did not passively accept the current negativity in her life, not defining herself by other’s “meanness.” Rather she acknowledged the boundary between herself and community both psychologically and physically in the permeable boundary of her home. Her home as a meaningful and purposeful place for developing a sense of security and safety enabled her to preserve and celebrate important elements of life.  Janet’s story: Janet is an unemployed 55-year-old woman who has lived in a one-bedroom apartment in the regeneration area for six years with her husband. Janet’s family lived locally and she identified close relationships with neighbours and resident groups in the community. Janet chose to document (in photographs) her daily routines in the community, including visits to the local shops, post office, and marketplace. These represent “third places,” those informal gathering places, hubs of social life, that foster interaction between community residents. Her confined home living space echoed an emptiness in her life while third places (see figures 16.1 and 16.2) offered her an escape from home and social isolation together with mental stimulation and a regular routine that structured her life: Sometimes people can just be looking at the four walls at home. Nowhere to go. Nothing to do. Nothing to keep them stimulated. A trip to the (shopping) precinct gave them the opportunity to talk with other people rather than just being stuck in their home. The chance to get out of their house if they feel a bit depressed.

Janet described her routine as a traversing of time and space interspersed with conversations about family, health and wellness, and community issues. These, she felt, bolstered her sense of being a family woman, responsible for the health and wellness of her family and community.

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Figure 16.1. and 16.2.  Meaningful places in the local community

Community belongingness came, for Janet, with community responsibility shared with other approachable women like her; women looking after each other in a very direct way: You know you can come here and they (other women) are not bothered what you say. You can tell them

anything and you know that they won’t go telling anybody and they will give you some good advice. Things that you would not tell your family and ... not everybody likes going to the doctors because you are scared.

Janet recounted the restorative quality of the marketplace, providing a setting to excuse herself from the pressures of domestic life: These were places where you came back (home) feeling really positive. I have nothing against my husband, but sometimes you just need to get out of the house. You would be going mad. Then you would

head down to the café and have a break, have a few cups of tea, in fact you used to be swimming in tea. Then you would go back home and realize that everything is OK. In fact, you would forget about why you went out in the first place. To no longer have those places, then you have nowhere to escape to.

When examined within the context of regeneration and change, Janet feared for her well-being once restorative community hubs had been repurposed. Janet’s fears were realized as the demolition of “her” 20-year-old local shopping precinct took place. To Janet, the regeneration stripped her community of its comforting permanence and social embeddedness, an embeddedness that located her and others in her community in both space and time. Being personally known on the streets and in local places was not simply about being part of a social network; it connected past and present in very intimate ways: We used to know who owned what. The chippy was owned by Brian and had been for 40 years. The café had been in the Sivori family for 40 years. As soon as you went in, it was “oh hello.” They knew

about you, about your family and asked how you were. We would go in and have a coffee and a natter. We enjoyed that. But it was more than that. If you were having problems, you knew you could go in there and there would be someone to talk to. They would give you advice and you would do the same.

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Figure 16.3. and 16.4.  Environmentally dilapidated sites of social well-being

Figures 16.5. and 16.6.  Barring community from community spaces

Janet contrasted the well-being function of such places with the monumental structures of the regeneration, the statues and large-scale public art. These, she felt, were really for visitors or outsiders to her community, simply to be looked at rather than to support the community: These places (community hubs) just started shutting down. One minute they were up and one minute they were down. Some people just stopped coming out all together after that café closed. If those places

are no longer there then you are no longer going to meet people are you? Why do we want to look at the Big Bang (Public Art)? That’s for other people, not for us.

In this, a sense of infiltration, a displacement of local people can be felt. Loss of the local cafe prompted the creation of a new community owned café, financed through local fundraising events, staffed by volunteers, and located in a dilapidated building. Old routines were then re-established (see figures 16.3 and 16.4). Janet’s account points to the importance of community ownership where local people challenged the regeneration through conscious and deliberative reconstruction of places of well-being. Here, the dynamic appropriation and cultivation of third places is crucial to bridge the regeneration gulf between community needs and physical regeneration, between professional control and local power and between passivity and resistance. Janet’s photographs in figures 16.5 and 16.6 encapsulate how local places were taken from the community and made inaccessible, effectively “barring” local residents from their community:

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Judith Sixsmith, Ryan Woolrych, and Mei Lan Fang There used to be a community centre on that site. It was well used. Bit of an old building but it was OK. They [regeneration professionals] said they were knocking it down. Then they put these signs up and

these things are right across the neighbourhood. We don’t know when we are going to see something

up and when we are going to be able to start using it again. What are we going to do in the meantime?

This might be interpreted as a step beyond dislocation; this constitutes a betrayal of local people, but in that betrayal lies the motivation to fight for well-being.

DISCUSSION The three case studies provide vivid understandings of the ways in which urban regeneration praxis can transform the social and personal well-being of marginalized mid-life women in disadvantaged communities. These women struggled to manage the everyday life of their families and themselves, found, in different ways, the inner strength to preserve their well-being. They transcended the sense of “othering” (Phoenix, 2009) they experienced through racialization (in the hostility directed towards the body inside the hijab), as well as their positioning as invisible middle-age women (no longer at the centre of societal gaze), voiceless and “unknowing” in the context of the regeneration. They spoke openly about being positioned as “idiots” by professionals whose agenda was alien and uncertain. Nonetheless, they coped with such “othering” experiences by diminishing the actions of the regeneration as “bureaucratic nonsense” and framing themselves as privileged knowledge holders, much as Johnson et al. (2004) found in their study of “othering” in the health services. These women recognized the entangled meshes of privilege and power (from managerial decision making to professional enactments) while bolstering their own capacity for agency in adopting a “them and us” perspective. They know how power is structured within the regeneration and seek to operate outside of those structures. While this more antagonistic stance seemed to preclude integrated working with professionals to jointly produce a socially and culturally sensitive regeneration process, it did help to improve social and personal well-being, both in terms of hedonistic (asocial events) and eudemonic (purposeful and worthwhile community transformations) experiences. In different ways, the women faced situations of displacement and betrayal, social isolation and landscapes of fear, yet demonstrated personal and social agency in the ways they resisted the very real impact of oppressive regeneration practices which pervaded both their home life and community interactions. Such resistances were framed not only in their gendered understandings of community life but simultaneously in their current life course and place-based locations where family, home, and community were the substance of their everyday actions. As their communities were transformed and gentrified, they used local knowledge to reclaim the complex and changing places that made up the texture of their lives. As such, the gendering of place could be seen in their choices to re-create space for social life to flourish. In their overt enabling of sociality in their re-created communities, these women focused not on seeing themselves as regenerated people, lifted from social disadvantaged by the good works of the regeneration professionals, but on keeping their families together and safe, and sustaining social networks of support where they could. In terms of well-being, hedonism was not the main priority of the women; well-being was seen more

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in the purposive sustaining of home, family, and community. These women knew what they wanted, quite simply a home, family, and community in which they belonged. Therein lay their well-being. Indeed, they created places (such as the community café) and communities of resistance and resilience and in doing so repositioned themselves as valuable and valued within their communities. As regeneration praxis operated to render them invisible and excluded from regeneration decision making, they fought to achieve visibility using the tacit knowledge held as women, articulating the need for social connectedness to maintain well-being. The women prioritized social connectedness over aesthetic developments and refused to accept the “bulldozing” tactics evident all around them. They remind us that it is in relationality that power lies, not in individual struggles. Local “faces” and “places” provided opportunities for “small-step” activism that can ultimately change lives. Here, women’s opportunities were indeed enhanced by the regeneration, not in terms of employment, financial benefits, and independent lifestyles that Kern (2010) suggested, but in the social spaces of resistance and the power that comes with knowing “you” can make a difference. Moreover, the women resurrected the everyday routines that confirmed their identities as local women, meeting in the café and hairdressers to discuss family, health, and community issues. The power of everyday routinization has been identified in O’Brien and Rodden’s (1997) work and more specifically in Tolmie et al.’s (2003) exposition of routine in domestic life. The women stabilized their lives by reconstituting the routines that maintained them as homemakers and health experts within their families (Sixsmith & Boneham, 2004). Tolmie et al. (2003) argued that routines are highly significant, yet their meaning is largely invisible in home and community life. Their significance, however, lies in their structuring of “unremarkable” power; the power to demand the “doing” of certain things in specific times and places. What is interesting here is the almost conscious embedding of old routines in new places, disrupting social and cultural hierarchies of power intended by the regeneration by the “implicativeness” of the taken-for-granted unnoticed routine. The discussion so far has presented some interpretations of the voice of middle-age women living in a disadvantaged yet transitional community; however, further interpretations can be made which highlight silences in the data. The women were curiously silent about their low-income status and their financial struggles. This is not to say that being “poor” was of little consequence to them or had little bearing on their well-being. Rather, such a silence highlights the importance they place on family and home, on local action rather than passivity. They sought to act within their financial means, rarely looking to further their own economic standing. The small-scale differences they created to improve their own lives were similarly of value to other local residents. Once again, the very social outlook of the women is reinforced on a local community level. The findings of this study are limited to three case studies and so population generalization is not possible. However, the richness of the data points to conceptualizations of oppression, power, and identity that provide new insights into the transformation of experiences of disadvantage and exclusion to empowerment and agency. Having acknowledged the limitations and strengths of the data, there are some implications for policy that cannot be overlooked. First, a more nuanced understanding of the intersecting structures of gender, age, and place could revitalize policy on regeneration and the involvement of local communities by ensuring that regeneration is more comprehensively grounded in the real-life, complex circumstances of local residents. Second, the notion of regeneration was not something they connected with. What they saw was more in line with destruction of place.

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Because regeneration professions were perceived to locate them as “idiots,” there was little chance of working together for the benefit of all. The decision-making powers of the resident community were subverted, as regeneration sought more visible forms of change through transformation of the physical infrastructure. As the views of the community were “traded off,” there was little understanding of the ways in which marginal groups experience regeneration, a by-product of ineffective processes of planning and governance. The training of professionals to undertake informed and culturally sensitive partnerships with residents is of paramount importance to ensure that resident involvement in the design and governance of their communities really does place a premium on well-being.

LESSONS FOR CANADA Experiences of “othering” may well be a product of urban regeneration as can been seen in different global contexts; yet places embed the social and historical structures through which people are “othered.” Within the Canadian context, its place histories are unique and situated in colonial rule, a process that has disfigured the lives of particular groups, such as Indigenous women, across generations through historical violence and trauma. In major metropolitan cities across Canada, particularly in Vancouver, marginalized persons are concentrated in impoverished areas and experience multiple psychosocial oppressions, from substance use to malnutrition. Women in their situations, in parallel with the women in the case studies, can be “othered” through their gender, through their location in place that inscribes their social worth, and through their age. This does not mean, however, that they are totally disempowered. Rather, a closer look at the social resistances and resilience they undertake is warranted. Nevertheless, experiences of gentrification in Vancouver are very different to the stories voiced by the women from the three case studies. In Canada, immigration structures and policies that favour wealthy migrants determine where local people live. To gain residency in Canada, wealthy migrants must invest a substantial sum of money, and many opt to purchase property, spaces that remain empty and unlived in. Meanwhile, as living spaces in the city become occupied by transient persons, local residents become displaced and forced to live in areas with higher crime rates and fewer employment opportunities. Yet, despite such differences, lessons from the UK case studies have a resonance in the Canadian and the Vancouver milieu; the UK women were, after all, forcibly relocated but in their own community. They endured psychological and social fragmentation and distancing and their financial circumstances were not improved. The systematic exclusion of Indigenous peoples, women, persons of colour, gay people, and migrant groups in Canada, “has rendered a crisis of citizenship, which remains entrapped within white settler notions of identity” (Ahluwalia, 2001, p. 63), since, “identity formation is tied inextricably to a process of othering” (p. 70). Consequently, and much as in the United Kingdom, when attempting to understand well-being in place and the sense of place belonging it is important to explore the interstitial social and cultural space in which marginalized people are located through the interrogation of crucial histories and how these influence individual experiences. But when we do so, we need to really “see what we are looking at” rather than see what we expect to be there, in that way we can identify the myriad of everyday ways in which privilege and hierarchical power structures are subverted and power reclaimed.

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DISCUSSION QUESTIONS 1 What are the dynamics of social transformation and urban regeneration in your own communities, and what lessons might be applied from this chapter? 2 What do the case studies suggest about the notion of well-being? 3 How do the social, environmental and political contexts of the United Kingdom and Canada shape urban regeneration differently, and how might they compare with lowand middle-income countries? Would the lessons learned apply in such contexts?

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Judith Sixsmith, Ryan Woolrych, and Mei Lan Fang Sixsmith, J., Fang, M. L., Woolrych, R., Canham, S., Battersby, L., Ren, T. H., & Sixsmith, A. (2019). Aging-in-place for low-income seniors: Living at the intersection of multiple identities, positionalities, and oppressions. In O. Hankivsky, & J. Jordan-Zachery (Eds.), The Palgrave handbook of intersectionality in public policy (pp. 641–664). Palgrave MacMillan. Skaburskis, A. (2012). Gentrification and Toronto’s changing household characteristics and income distribution. Journal of Planning Education and Research, 32(2), 191–203. https://doi.org/10.1177 /0739456X11428325 Spencer, K. M. (1979) Inner city policy. Local Government Studies, 5(2), 59–62. https://doi.org/10.1080 /03003937908432786 Tallon, A. (2010). Urban regeneration in the UK. Routledge. Tolmie, P., Pycock, J., Diggins, T., MacLean, A., & Karsenty, A. (2003). Towards the unremarkable computer: Making technology at home in domestic routine. In R. Harper (Eds.), Inside the smart home: Ideas, possibilities and method (pp. 183–206). Springer. Ussher, J. M. (Ed.). (2000). Women’s health: Contemporary international perspectives. British Psychological Society. Walks, R. A., & Maaranen, R. (2008). Gentrification, social mix, and social polarization: Testing the linkages in large Canadian cities. Urban Geography, 29(4), 293–326. https://doi.org/10.2747/0272-3638.29.4.293 Wang, C. C., Cash, J. L., & Powers, L. S. (2000). Who knows the streets as well as the homeless? Promoting personal and community action through photovoice. Health Promotion Practice, 1(1), 81–89. https://doi .org/10.1177/152483990000100113 Woolrych, R., & Sixsmith, J. (2013a). Mobilising community participation and engagement: The perspective of regeneration professionals. Journal of Urban Regeneration and Renewal, 6(3), 309–321. Woolrych, R., & Sixsmith, J. (2013b). Placing well-being and participation within processes of urban regeneration. International Journal of Public Sector Management, 26(3), 216–231. https://doi.org/10.1108 /IJPSM-09-2011-0119 Woolrych, R., & Sixsmith, J. (2017). Place, space and displacement: Gentrification, regeneration and the legacy of the Commonwealth Games in East Manchester. In A. Portella & G. Pereira (Eds.), Insights on favelas (pp. 137–168). UFPel Publishing.

CHAPTER SEVENTEEN

Violence against Women: Intersections of Health and Justice Kate Rossiter

Violence against women is a violation of human rights (García-Moreno & Watts, 2011; Hankivsky & Varcoe, 2007), is a form of gender discrimination ( Johnson & Colpitts, 2013), and was declared by the World Health Organization to be “a global public health problem of epidemic proportions” (García-Moreno et al., 2013, p. 3). Not only does violence impact women’s health and well-being, but it is also implicated in women’s education, employment, poverty, housing instability, and homelessness (Baker et al., 2003; Barata & Stewart, 2010; Ministry of Citizenship and Immigration, 2005; Moe & Bell, 2004; Ponic et al., 2011; Sev’er, 2002; Tolman & Wang, 2005). These intersecting social problems that stem from violence against women in turn have important implications for women’s health (Rollins et al., 2012). Violence against women was defined in the United Nations Declaration on the Elimination of ­Violence Against Women as “any act of gender-based violence that results in, or is likely to result in, physical, sexual or mental harm or suffering to women, including threats of such acts, coercion or arbitrary deprivation of liberty, whether occurring in public or in private life” (United Nations General ­Assembly, 1993, ­Article 1). Gender-based violence includes multiple forms of violence and abuse, including i­ntimate partner violence, criminal harassment, sexualized violence (including sexual assault in the context of intimate partner violence and war), trafficking of girls and women for the purposes of sexual e­ xploitation, forced pregnancy and abortion, female genital ­mutilation/cutting,1 and femicide, including intimate partner femicide and culturally framed f­emicide2 (­Aujla  & Gill, 2014; Johnson & Colpitts, 2013; ­Johnson & Dawson, 2011). All of these forms of violence are gendered in that they are perpetrated predominantly by men against women and girls and are rooted in gender inequity (Hankivsky & Varcoe, 2007; Johnson & Dawson, 2011). Yet experiences of violence are not only gendered; because of women’s diversity, the risks, nature, and impacts of gender-based violence vary significantly. Violence against women is often described as a social and public health issue that impacts women regardless of race, ethnicity, socioeconomic status, sexual orientation, age, and ability. ­However, women who are marginalized by intersecting inequities based on the interaction of gender and other social categories, such as race, ethnicity, class, sexuality, age, and disability, experience higher levels of risk and face unique barriers when accessing health care and justice ( Johnson & ­Dawson, 2011).

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For example, research has found that transgender individuals are at increased risk of violence and discrimination and face a multitude of barriers when accessing services in what have been d ­ escribed as “cisnormative systems” (Bauer et al., 2009). In a Canadian study of female street-based sex workers, structural factors, including homelessness, criminalization, and limited access to drug treatment services, were found to independently increase women’s risk of gender-based violence (Shannon et al., 2009). A study of sexual violence against men and women with a variety of physical, mental, and learning disabilities found that women with disabilities were the group of participants most likely to have experienced sexual violence in their lifetime (Mitra et al., 2011). However, men with disabilities were more likely than women without disabilities to have experienced sexual violence, illustrating that gender is not always the primary, or most important, social category with respect to violence risk. Women who occupy various specific social locations may experience violence in unique ways as a result of their unequal access to power and layered experiences of stigma and discrimination ( ­Johnson & Dawson, 2011). For example, intimate partner violence against queer and trans women may include threats to “out” them to family, friends, employers or co-workers; humiliating comments about their gender identity and/or gender expression; isolation from the queer and trans communities; and the denial of access to gender-affirming health care, all of which are forms of violence perpetrated within the context of heterosexism and homophobia/transphobia (Badenes-Ribera et al., 2015; Baker et al., 2013; Yerke & DeFoo, 2016). For Indigenous women in Canada, violence is intricately linked to racism and poverty, and often compounded by the intergenerational impacts of trauma, stemming from colonization, the legacy of the Indian residential schools and day schools, the Sixties Scoop, and the continued overrepresentation of Indigenous people in the child welfare and criminal justice systems (Barker et al., 2014; Johnson & Dawson, 2011; McKenzie et al., 2016; Truth and Reconciliation Commission of Canada, 2015). This chapter will provide an overview of violence against women in Canada and describe the ways in which violence against women is minimized and ignored, particularly in the lives of women who experience intersecting forms of oppression, stigma, and discrimination. The chapter discusses the issues of naming and framing the problem of violence against women; addresses the challenges in measuring violence against women in Canada; and outlines the health, social, and economic costs associated with violence against women. I then report on the findings of an unpublished doctoral dissertation exploring the intersections of violence against women, mental health, and justice to illustrate the ways in which experiences of violence and trauma are rendered invisible in the lives of women involved in the forensic mental health system. I emphasize the importance of a trauma-informed, intersectional approach to address experiences of violence and trauma in the lives of women in the health and justice systems and conclude the chapter with suggestions for improving the response to violence against women in Canada.

NAMING AND FRAMING THE PROBLEM OF VIOLENCE AGAINST WOMEN Feminist scholars and activists have played a critical role in naming the problem of violence against women and shifting the focus from individual-level risk factors and remedies to the social and structural causes and consequences of gender-based violence ( Johnson & Dawson, 2011). Early

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feminist theories examined the role of patriarchy in creating and sustaining gender inequality and gender-based violence (de Beauvoir, 1989; Morgan, 1984). Yet many early theories focused on women’s “sameness,” essentializing women’s experiences and obscuring women’s differences based on intersecting forms of oppression (Burgess-Proctor, 2006; Johnson & Dawson, 2011). Women were often constructed as “raceless, classless, albeit gendered human beings” (Collins, 1999, p. 276), perpetuating the inaccurate notion of a “universal” female experience (Grillo, 1995). Some scholars have suggested that this framing of violence against women as an issue that affects all women has been important in bringing much needed attention to the issue of gender-based violence (Nixon & Humphreys 2010); however, this framing also unintentionally privileged some women’s experiences and rendered invisible the experiences of women marginalized by multiple intersecting forms of oppression and discrimination. Black feminists and women of colour challenged the notion of a universal female experience, arguing that gender could not be experienced separately from race and that these forms of ­oppression were interlocking and mutually reinforcing (Collins, 1999; Crenshaw, 1991; Davis, 1981; hooks, 1984). Indigenous scholars and activists have highlighted the intersecting impacts of colonization, racism, sexism, and poverty, challenging the essentialism of women and illustrating the multiple, intersecting oppressions that impact Indigenous women’s lives (Cardinal & Gilchrist, 2014; L ­ aRocque, 1994; Monture-Angus, 2006). The term intersectionality was later popularized by Crenshaw (1991) and Collins (1999) and has since been heralded as one of the most important contributions to feminist theory and scholarship (Burgess-Proctor, 2006; Dill et al., 2007). It has been taken up by women’s health researchers and feminist criminologists to better understand the diverse needs and experiences of women and to illustrate how the intersection of gender and other social inequities shape women’s experiences of violence and their access to resources (­Burgess-Proctor, 2006; Davis, 2008; Dill et al., 2007; Erez et al., 2009; Sokoloff & Dupont, 2005; Varcoe et al., 2007). By dislodging gender as the key analytical framework, intersectionality allows for a more nuanced understanding of violence against women and illuminates the complexity of women’s lived experiences of violence and oppression. For example, women who have immigrated to Canada do not necessarily experience violence at higher rates than other women, but they are less likely to access formal (e.g., anti-violence) services or informal (e.g., family) supports (Barrett & St. Pierre, 2011; Brennan, 2011; Perreault & Brennan, 2009). Research exploring the intersections of violence against women and immigration status in Canada reveals that the availability of safe, affordable housing and access to ­multi-lingual, culturally responsive services are critical to immigrant and refugee women’s ability to leave abusive relationships (Thurston et al., 2013). Yet immigrant and refugee women face a multitude of unique barriers to support and protection because of precarious legal status, language barriers, limited knowledge about Canadian laws, a mistrust of authorities (e.g., police), and/or the limited availability of culturally appropriate services (Barrett & St. Pierre, 2011; BC Provincial Office of Domestic Violence, 2014). Women with a wide variety of physical, mental, sensory, and learning disabilities report higher rates of violence and abuse than women without disabilities, and they are more likely to seek formal supports such as shelters and police services (Barrett & St. Pierre, 2011; Mitra, et al., 2011). They may experience violence in unique ways depending on the specific disabilities they live with and the degree to which those disabilities affect their activities and functioning (Barrett & St. Pierre, 2011).

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For women with mental health–related disabilities in abusive relationships, partners may control their access to psychiatric medications that help maintain their safety and well-being, tell them they are imagining the abuse, or threaten to have them institutionalized or have their children taken away if they attempt to leave or report the abuse (BC Association of Specialized Victim Assistance & Counselling Programs, 2007; BC Society of Transition Houses, 2011). Additionally, and importantly, for individuals (especially older women) with physical and mental disabilities, abuse is more likely to be perpetrated by caregivers and people in positions of trust and power (BC Society of Transition Houses, 2011; Cotter, 2018; Mitra et al., 2011). Applying an intersectional framework to the problem of violence against women encourages a focus on the interlocking systems of oppression that sustain social inequities (Nixon & ­Humphreys, 2010). This framing of gender-based violence allows for a deeper understanding of multiple forms of oppression, and the ways in which power and privilege impact on women’s risk and experience of violence, as well as policy responses to the issue of violence against women (Nixon & Humphreys, 2010). Academics and advocates have long been concerned about language in the field of violence against women and continue to be concerned in light of backlash against feminism and a growing body of research claiming gender symmetry in intimate partner violence (see, for example, research from the Partner Abuse State of Knowledge Project, as reported in five consecutive issues of the journal Partner Abuse). This research relies on measures, such as the Conflict Tactics Scale, that de-contextualize women’s experiences of violence, artificially disconnect violence against women from broader social issues such as discrimination and inequality, and contribute to the “degendering” of the problem (DeKeseredy & Dragiewicz, 2014; DeKeseredy & Swartz, 2011; Johnson & Colpitts, 2013). Yet there is strong evidence that the health and social impacts of intimate partner violence are unequally distributed, with women – and their children – bearing the greatest burden (Artz et al., 2014; García-Moreno & Watts, 2011). For example, research consistently reveals that women remain at greater risk than men of experiencing multiple victimizations or repeated violence over the life course and more serious forms of intimate partner violence (Brennan, 2011; Burczycka & Conroy, 2018). They are more likely to experience emotional suffering and injuries, require medical attention, and take time off work as a result of intimate partner violence ( Johnson & Colpitts, 2013). Women are also more likely to experience chronic violence, fear, coercion, intimidation, and threats within intimate relationships, and are more likely to be killed by an abusive partner (Burczycka & Conroy, 2018; Sinha, 2013b).

MEASURING VIOLENCE AGAINST WOMEN IN CANADA Rates of violence against women in Canada remain unacceptably high, with incidents of intimate partner violence accounting for over one quarter (28  per  cent) of all violent crimes reported to police (Burczycka & Conroy, 2017; McInturff, 2013). Of course, the way in which violence against women is defined and measured can have a significant impact on the resulting rates (­Alhabib et al., 2010; Nixon & Humphreys, 2010), and some argue that violence against women in ­Canada remains poorly defined and measured (Clark & Du Mont, 2003; Johnson & Colpitts, 2013;

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McInturff, 2013). As such, violence against women continues to be significantly underreported, and estimates based on national survey data should be considered conservative. Police-reported incidents of violence against women are limited, and self-reported data suggest that approximately 70  per  cent of people who have experienced intimate partner violence never report the violence to police, while it is estimated that only 5  per  cent of sexual assault cases are reported to police, making it the most underreported violent crime in Canada (­Brennan & ­Taylor-Butts, 2008; Burczycka & Conroy, 2017; Conroy & Cotter, 2017; McInturff, 2013; ­Rotenberg, 2017). The General Social Survey (GSS) victimization cycle is a self-report measure administered by Statistics Canada every five years. The strength of this survey is that it records those incidents of violence against women that have not been reported to police. However, it ­remains limited because it is conducted by telephone (thereby excluding women who are without access to a landline) in English and French only (thereby excluding women with limited proficiency in these languages), and women experiencing violence may not disclose because of stigma, shame, guilt, lack of trust in the interviewer, or personal safety concerns ( Jiwani, 2000). The Violence Against Women Survey (VAWS), conducted in 1993, was the most comprehensive survey of self-reported violence against women in Canada, and was unique in that a wide range of stakeholders were consulted in the development of the survey (Statistics Canada, 1993). It gathered information about intimate partner and sexual violence dating back to age 16 and captured not only the experiences of violence against women but also the impacts of gender-based violence ­( Johnson & Dawson, 2011). However, the survey has never been replicated; instead, a less comprehensive set of questions exploring recent intimate partner violence and sexual violence was incorporated into existing national crime victimization surveys ( Johnson & Dawson, 2011). It is encouraging that, in 2018, Statistics Canada launched a new Survey of Safety in Public and Private Spaces, which includes questions about violent victimization, sexual assault, and intimate partner violence and abuse, and draws on questions from the Composite Abuse Scale (Ford-Gilboe et al., 2016). Statistics Canada has produced an annual report on family violence since 1993, which compiles and synthesizes data on various types of family violence, including intimate partner violence, from a number of sources, including police- and self-reported measures. The most recent publication indicates that, despite reports that the rate of intimate partner violence against women in Canada has declined overall, the rate of police-reported intimate partner sexual assault has increased since 2010 (Burczycka & Conroy, 2017, 2018; Sinha, 2013a). Another publication revealed that, while the rate of violent and non-violent crimes has declined, self-reported sexual assault rates have remained stable (Conroy & Cotter, 2017). Yet, the rate of police-reported sexual assault has decreased, suggesting that fewer women who have experienced sexual assault are choosing to report this violence to the police (McInturff, 2013; Sinha, 2013a). While both police-reported and self-reported measures of violence against women have strengths and limitations, together they provide a more complete picture of violence against women, and the status of women, in Canada (McInturff, 2013). Data from other sources help to fill important gaps in knowledge about violence against women who are marginalized by intersecting inequities. For example, the Sisters in Spirit initiative has drawn attention to the systemic factors that contribute to violence against Indigenous women and girls, including the intersection of racism and sexism, the ongoing impacts of colonization, and the intergenerational impacts of trauma,

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which have led to the loss of language and cultural identity, socioeconomic exclusion, and increased risk for substance use, depression, complex trauma, suicide, and intimate partner violence in Indigenous communities (Bombay et al., 2009; Byrne & Abbott, 2011; Native Women’s ­Association of ­Canada, 2010). Indigenous women in Canada continue to experience violence at higher rates than ­non-Indigenous women and, although Indigenous people compose only 5 per cent of the population in Canada, they account for 25 per cent of all homicide victims, with Indigenous women estimated to represent 10 per cent of all women killed in Canada (Brownridge, 2008; Mulligan et  al., 2016; Native Women’s Association of Canada, 2009, 2010, 2015). The homicide rate for Indigenous women is five times that of non-Indigenous women (David, 2017), and a report by the Royal ­Canadian Mounted Police (2014) reported over 1180 police-recorded cases of missing and murdered Indigenous women in Canada. These figures underscore the reality of continued colonization of Indigenous people in Canada, the impacts of intergenerational trauma and intersecting forms of oppression, and the devaluing of the lives of Indigenous women and girls (National ­Inquiry into Missing and Murdered Indigenous Women and Girls, 2017).

HEALTH AND SOCIAL COSTS OF VIOLENCE AGAINST WOMEN Violence against women has significant health and social costs for women and their children. The health impacts of gender-based violence range from physical and mental health concerns to sexual and reproductive health issues; some emerge in the immediate aftermath of violence and may be relatively short-lived, whereas others may develop more gradually and persist over the life course (Dillon et al., 2013; World Health Organization & Pan American Health Organization, 2012). The physical health effects of violence against women include physical injuries (e.g., bruises, broken bones, head injuries), chronic pain, chronic health conditions, disability, and death, while mental health outcomes include depression, sleep disturbances, anxiety, post-traumatic stress disorder, and self-harm (World Health Organization, 2013). Women also experience sexual and reproductive health outcomes i­ncluding ­unintended pregnancy, unsafe abortion, sexually transmitted infections (e.g., HIV), and gynaecological problems (Black, 2011; World Health Organization, 2013). Given the wide range of negative health outcomes associated with violence against women, it is not surprising that women ­experiencing intimate partner violence have been found to use health services, including emergency and mental health services, at a higher rate than non-abused women (Black, 2011; Bonomi et al., 2009). Women who experience multiple forms of violence or repeat victimization are at risk of more serious health problems because of the cumulative impacts of violence (Cavanaugh et al., 2014; Davies et al., 2015; Scott-Storey, 2011) (see figure 17.1). According to García-Moreno & Watts (2011), “when the cumulative impacts on mortality and morbidity are assessed, the health burden [of violence against women] is often higher than for other, more commonly accepted, public health priorities” (p. 2). There is also growing evidence of the harmful effects of violence against women on children who witness, hear, or are otherwise exposed to violence against women, particularly when that violence is directed towards women caregivers (Bair-Merritt et al., 2006). While this body of literature is still developing, research, including the Adverse Childhood Experiences (ACE) study, suggests that children exposed to intimate partner violence are at an increased risk of experiencing

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Figure 17.1.  Sadness.This image reflects the cumulative impacts of gender-based violence and trauma. Image credit: iStock / yezik

developmental consequences, social and behavioural challenges in childhood and adolescence, and lasting negative physical and mental health outcomes (Artz et al., 2014; Bair-Merritt et al., 2006; Bair-Merritt et al., 2008; Dube et al., 2002; Evans et al., 2008).

ECONOMIC COSTS OF VIOLENCE AGAINST WOMEN There is also a growing body of research on the economic costs of violence against women in Canada (e.g., McInturff, 2013; Tang et al., 2006; Varcoe et al., 2011; Zhang et al., 2012). The first Canadian study to estimate the cost of violence against women determined that the health-related costs in one

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year were $1.5 billion (Day, 1995). Another study published the same year (Greaves et  al., 1995) estimated the health, legal, employment, and social service costs of violence against women to be $4.2 billion annually. More recent research suggests that, even after women have left violent relationships, the costs of violence remain high. Varcoe et al., (2011) found that the costs incurred by women, third parties, and society remained high three years after leaving a violent relationship, amounting to a national annual cost of $6.9 billion. This estimate reflected both health (e.g., hospitalization, sexual assault services, prescription medication, lost wages or school days lost because of health problems) and non-health (e.g., crisis lines, shelter use, victim services, advocacy, legal aid, social assistance, child care, food bank use) costs that were either directly or partially attributable to intimate partner violence. Drawing on the per woman cost of $13,162.39 estimated by Varcoe et al., (2011), researchers in Alberta estimated that more than $600 million was spent on health care and other supports for women and children who had experienced domestic violence in that province alone over the past five years (Wells et al., 2012). The authors noted that this estimate did not include criminal justice system costs, employment costs, and the costs associated with the impact of domestic violence exposure for children and youth, all of which are likely to increase the cost estimates substantially. Given the challenges associated with measuring the incidence of intimate partner violence in Canada and developing costing models, most estimates of the economic costs of violence against women are considered to be conservative (Wells et al., 2012). And yet, even with conservative estimates, the costs of violence against women in Canada are staggering. In the 2011–2012 fiscal year, the federal government invested $79.9 billion in programs and services to address violence against women (McInturff, 2013); however, until recently, efforts to address the conditions that sustain gender inequality and gender-based violence, and improve the status of women in C ­ anada, have been limited (Ad Hoc F/P/T Working Group, 2003; Wells et al., 2012; World Health ­Organization, 2002). Thus, women have continued to experience high rates of gender-based violence and many end up in the mental health and criminal justice systems.

“THE WALKING WOUNDED”: INTERSECTIONS OF VIOLENCE, MENTAL HEALTH, AND CRIMINAL JUSTICE Violence against women and the effects of trauma are intricately linked to women’s pathways to mental health services and the criminal justice system. It has been well established in the literature that women in the mental health, correctional, and forensic psychiatric systems have extensive histories of violence and abuse (Gearon et al., 2003; Moloney et al., 2009; Mueser et al., 2002; Nicholls et al., 2011; Simpson & Penney, 2011). Women who have been marginalized by intersecting forms of oppression not only are at greater risk of violence but are also especially likely to be criminalized, as evidenced by the disproportionate representation of Indigenous women, women of colour, women experiencing poverty, women who do sex work, and women with serious mental health concerns in the Canadian correctional system (Balfour, 2012; Comack, 2006). Critical and feminist scholars have shed light on the complex ways in which women’s responses to violence, and attempts to cope with the effects of violence, have been pathologized and criminalized (Chesney-Lind, 2002; Davis, 1999; Gilfus, 1992; Humphreys & Thiara, 2003; Kilty, 2006; Pollack, 2005).

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Women experiencing multiple, intersecting forms of oppression and discrimination may not be considered by the police, courts, and government to be “legitimate,” “deserving,” or “credible” ­victims. As a result, once involved in the mental health and/or criminal justice systems, these women may find that their experiences of violence and trauma are overlooked or dismissed. Here, I discuss findings from an unpublished qualitative doctoral study (Rossiter, 2012) that explored the intersections of violence against women, mental health, and criminal justice. The study focused on the role of violence in women’s pathways to forensic mental health services and shed light on the ways in which women’s experiences of violence were obscured, and their voices silenced, at the interface of the mental health and criminal justice systems. Forensic mental health services are specialized mental health services provided to individuals with mental health diagnoses who have come into conflict with the law. At the time this study was conducted, women composed approximately 15–20 per cent of British Columbia’s forensic mental health population and were most often referred to these services as a condition of a probation order or as a result of being found not criminally responsible on account of mental disorder under Part XX.1 of the Canadian Criminal Code (1985). International research with forensic inpatients has revealed rates of childhood physical and sexual abuse between 15 per cent and 81 per cent ­(Adshead, 1994; Bland et al., 1999; Spitzer et al., 2006; Timmerman & Emmelkamp, 2001). However, few studies have focused on violence and trauma in the lives of women receiving forensic mental health services and rarely from the perspectives of women themselves (Adshead, 1994; Bland et al., 1999; Jasper et al., 1998). Existing research suggests that violence and trauma are often overlooked in psychiatric and criminal justice populations where women’s emotions and behaviours may be interpreted as symptoms of mental illness or indicators of risk, rather than as responses to violence and trauma (Humphreys & Thiara, 2003). Being labelled mentally ill and/or criminal casts doubt on women’s credibility and “victim” status (Adshead, 1994; Heney & Kristiansen, 1998). In forensic settings, women bear a double stigma as a result of their involvement in both the mental health and criminal justice systems, with their reports of violence and trauma unlikely to be believed or taken seriously (Lloyd, 2006). The mental health effects of violence and abuse are also frequently misdiagnosed among women, particularly when they are also using substances to cope with the effects of violence and trauma (Brunet et al., 2007; Frueh et al., 2000; Morrow, 2002; Mueser et al., 1998; Mueser et al., 2002; Walsh et al., 2003). The limited attention given to violence and trauma in the lives of women at the interface of the mental health and criminal justice systems is especially troubling given that coercive and punitive settings are sites where the dynamics of abuse may be replicated, contributing to women’s powerlessness (Bill, 1998; Dirks, 2004; Girshick, 2003). The experience of powerlessness is especially common in forensic settings, where clients have limited autonomy and staff have power over legal and clinical decisions that directly impact their lives (Livingston & Rossiter, 2011; Livingston et al., 2011). In the study reported here (Rossiter, 2012), interviews were conducted with 16 women receiving forensic mental health treatment services and 13 forensic mental health staff. The research revealed that the lives of women involved in the forensic mental health system were replete with experiences of violence and trauma, which they described as closely linked to their mental health, substance use, and criminal behaviour. The women described multiple and layered experiences of violence

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and trauma throughout their lives, including childhood abuse, intimate partner violence, the witnessing of violent death, the loss of children, intrusive psychiatric symptoms, and the perpetration of violence. Although some women considered trauma to be a consequence of their involvement in the mental health, criminal justice, and/or forensic systems, many perceived their experiences of violence and trauma to be the root cause of their mental health concerns and substance use and their pathways to forensic mental health services. According to one woman who participated in the study: “Secrets keep you sick. So if you’ve got secrets about sexual abuse, and you’ve got secrets about people you see murdered, and you’ve got secrets about what your parents or child welfare or all these people did to you, it keeps you ill.” Women clients were described by forensic mental health staff as “disenfranchised,” “underserved,” and “prejudged,” and were characterized as experiencing multiple disadvantages and ­barriers, including limited education, poverty, homelessness, involvement in sex work, serious health concerns, physical disabilities, intellectual or developmental disabilities, and extreme isolation, which rendered them even more marginalized. As a result of these intersecting experiences, they were perceived by service providers to be “harder to engage,” “complicated,” “challenging,” and “difficult” – characterizations that served to minimize the impacts of violence and trauma, stigma and discrimination, and inequality, and obscure their complex needs ( Jacob et al., 2009; ­Peternelj-Taylor, 2004; Williams & Paul, 2008). Indeed, staff noted that women’s experiences of violence and trauma remained largely invisible in the forensic mental health system owing to a lack of awareness and training among forensic staff, women’s own concerns about disclosing experiences of violence to forensic staff, women’s lack of a voice in the forensic mental health system, and a fear among staff of doing further harm by responding inappropriately to disclosures of violence and trauma. Forensic staff participants described violence against women as an issue that was often “glossed over,” “ignored,” or “swept under the rug,” which some acknowledged could do more harm than good to women who were living with the impacts of violence. Staff participating in the study indicated that their colleagues were especially likely to ignore or minimize violence against women who were using substances, living in poverty, experiencing housing instability, or doing sex work. For example, a staff participant explained that in one case, a client who disclosed being sexually assaulted was not believed because she used substances and did sex work. Women experiencing intersecting forms of oppression and discrimination appeared to have little credibility as survivors of violence and abuse, despite the fact that the intersection of gender and other social inequities may significantly reduce women’s safety (White et al., 2006). The study also found that women’s experiences of violence were rendered invisible for women with more severe mental health symptoms, or when women had been diagnosed with a personality disorder such as borderline personality disorder. Forensic staff considered psychiatric diagnoses to be gendered, with the ongoing impacts of violence and trauma often interpreted by health professionals as “symptoms” rather than coping strategies. Staff suggested that, in the forensic mental health system, the focus was on women’s symptoms and behaviours, rather than on root causes or underlying issues. The stigma surrounding mental illness meant that clients who reported violence and trauma were not always believed, and their stories were sometimes interpreted as delusions, with psychiatrists holding the power to define what was and was not “real.” Forensic mental

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health professionals expressed concern about validating and reinforcing experiences of violence and trauma that were considered to be delusions, contributing to the further silencing of women with lived experiences of violence and trauma. One staff participant, reflecting on women involved in the forensic mental health system, said: “When I think of forensic and trauma, I just think of basically the walking wounded. People whose lives have been affected by the abuse that they’ve experienced or traumas that they’ve had and they’re coping as best they can and wandering through services, or through life, and end up in our service.” This sentiment underscored the need for trauma-informed mental health, criminal justice, and forensic psychiatric services as a key strategy in improving the response to violence against women in Canada.

IMPROVING THE RESPONSE TO VIOLENCE AGAINST WOMEN IN CANADA Canada’s international ranking in the area of gender equality dropped significantly in the decade that the Conservative Party was in power because of a lack of strong leadership in the area of women’s equality. Indeed, some scholars argued that the federal government had become increasingly “sympathetic to anti-feminist initiatives” (DeKeseredy & Dragiewicz, 2014, p. 231). This perception was evidenced by the failure of the Canadian government to develop a national violence against women action plan and in its dismissal of repeated calls for an inquest into the country’s more than 1180 missing and murdered Indigenous women (McInturff, 2013). However, in 2015, the Liberal Party formed the government and, in 2016, the Government of Canada launched a ­National Inquiry into Missing and Murdered Indigenous Women and Girls, an independent public enquiry to examine the systemic factors underlying violence against Indigenous women and girls in Canada. In 2017, Status of Women Canada announced It’s Time: Canada’s Strategy to Prevent and Address Gender-Based Violence, the first initiative of its kind, focusing on prevention, support for survivors and their families, and promoting responsive legal and justice systems. Improving the response to violence against women in Canada requires all levels of government to acknowledge the epidemic of gender-based violence and invest in prevention and response e­ fforts that specifically address the needs of women whose lives have been impacted by intersecting forms of oppression and who remain most at risk of experiencing gender-based violence. While important advancements and investments have been made by the federal government in recent years, violence against women in Canada continues to be a significant health and social issue that demands ongoing attention because of the significant social, health, and economic costs to women, their children, and society. Intersectionality-based policy analysis offers a method for governments and decision makers in the health, justice, and social service systems, to analyse the impacts of various policies on women with diverse backgrounds as the policies are developed (Hankivsky, 2012). This process encourages governments to move beyond gender as the primary category of analysis and to carefully consider the impacts of policies on women at specific social locations. By doing so, policymakers are better able to consider the diverse experiences and needs of women when developing policy solutions. This approach also assists decision makers in considering and addressing the gender and social inequities that are at the root of gender-based violence.

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Improving the response to violence against women also requires a reframing of the issue by front-line responders from one where women’s experiences of violence are minimized and overlooked to one where experiences of violence against women are acknowledged and addressed. The movement towards trauma-informed practice, which call on service providers across service systems to be more aware of the impacts of violence and trauma and reduce re-traumatization, has been an important step in improving the response to violence against women in Canada (Elliott et al., 2005; Harris & Fallot, 2001; Miller & Najavits, 2012; Muskett, 2014). However, trauma-­informed approaches must also be informed by an intersectional analysis such that women’s experiences of violence and trauma are understood within the contexts of their lives. In this way, service providers and policymakers alike can address not only violence against women but also the gender and social inequities in women’s lives that perpetuate gender-based violence.

DISCUSSION QUESTIONS 1 What are the strengths and limitations of the language of violence against women and gender-based violence in framing the issues raised in this chapter? 2 How can an intersectional analysis help to illuminate the underlying conditions and ­systemic inequities that contribute to violence against women? 3 What steps could be taken to dismantle the barriers to accessing health and justice for women experiencing violence and intersecting forms of oppression? 4 How might intersectionality-informed and trauma-informed approaches in the health and justice systems contribute to women’s healing from violence and trauma, and the prevention of violence against women? What are the limitations of the health and ­justice systems in addressing violence against women? 5 In what ways do you think the COVID-19 pandemic has affected the risk, nature, and impacts of violence against women and access to support and safety?

NOTES 1 The terms female genital cutting (FGC), female genital mutilation (FGM), female genital mutilation/cutting (FGM/C), and female circumcision have all been used to describe this practice; however, there is ongoing debate about the most appropriate terminology. While the World Health Organization uses the term FGM, many researchers and agencies prefer the term FGC as it does not condemn this cultural practice. I use the hybrid term FGM/C, as does UNICEF and the United Nations, to highlight this practice as a human rights violation and a form of violence against women, while also respecting that this framing remains controversial (UNICEF, 2013). 2 The term culturally framed femicide is used by the Canadian Femicide Observatory for Justice and ­Accountability (https://www.femicideincanada.ca) to refer to femicides, such as so-called honour killings and dowry-related femicides, that are framed as occurring within a particular cultural context.

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Violence against Women Statistics Canada. (1993). Violence Against Women Survey (VAWS). https://www23.statcan.gc.ca/imdb/p2SV .pl?Function=getSurvey&SDDS=3896 Statistics Canada. (2018). Survey of Safety in Public and Private Spaces. https://www23.statcan.gc.ca/imdb /p2SV.pl?Function=getSurvey&SDDS=5256 Status of Women Canada. (2017). It’s time: Canada’s strategy to prevent and address gender-based violence. https://publications.gc.ca/collections/collection_2017/cfc-swc/SW21-172-2017-5-eng.pdf Tang, B., Jamieson, E., Boyle, M., Libby, A., Gafni, A., & MacMillan, H. (2006). The influence of child abuse on the pattern of expenditures in women’s adult health service utilization in Ontario, Canada. Social Science & Medicine, 63(7), 1711–1719. https://doi.org/10.1016/j.socscimed.2006.04.015 The Truth and Reconciliation Commission of Canada. (2015). Honouring the truth, reconciling for the future: Summary of the final report of the Truth and Reconciliation Commission of Canada. https://nctr.ca/records /reports/#trc-reports Thurston, W. E., Roy, A., Clow, B., Este, D., Gordey, T., Haworth-Brockman, M., McCoy, L., Beck, R. R., Saulnier, C., & Carruthers, L. (2013). Pathways into and out of homelessness: Domestic violence and housing insecurity for immigrant women. Journal of Immigrant and Refugee Studies, 11, 278–298. https:// doi.org/10.1080/15562948.2013.801734 Timmerman, I. G., & Emmelkamp, P. M. (2001). The relationship between traumatic experiences, dissociation, and borderline personality pathology among male forensic patients and prisoners. Journal of Personality Disorders, 15(2), 136–149. https://doi.org/10.1521/pedi.15.2.136.19215 Tolman, R. M., & Wang. H. C. (2005). Domestic violence and women’s employment: Fixed effects models of three waves of women’s employment study data. American Journal of Community Psychology, 36(1-2), 147–158. https://doi.org/10.1007/s10464-005-6239-0 UNICEF. (2013). Female genital mutilation/cutting: A statistical overview and exploration of the dynamics of change. http://data.unicef.org/wp-content/uploads/2015/12/FGMC_Lo_res_Final_26.pdf United Nations General Assembly. (1993). Declaration on the elimination of violence against women. https:// undocs.org/en/A/RES/48/104 Varcoe, C., Hankivsky, O., Ford-Gilboe, M., Wuest, J., Wilk, P., Hammerton, J., & Campbell, J. (2011). Attributing selected costs to intimate partner violence in a sample of women who have left abusive partners: A social determinants of health approach. Canadian Public Policy, 37(3), 359–380. https://doi.org/10.3138/cpp.37.3.359 Varcoe, C., Hankivsky, O., & Morrow, M. (2007). Introduction: Beyond gender matters. In M. Morrow, O. Hankivsky, & C. Varcoe (Eds.), Women’s health in Canada: Critical perspectives on theory and policy (pp. 3–30). University of Toronto Press. Walsh, E., Moran, P., Scott, C., McKenzie, K., Burns, T., Creed, F., Tyrer, P., Murray, R. M., & Fahy, T. (2003). Prevalence of violent victimisation in severe mental illness. British Journal of Psychiatry, 183, 233–238. https://doi.org/10.1192/bjp.183.3.233 Wells, L., Boodt, C., & Emery, H. (2012). Preventing domestic violence in Alberta: A cost savings perspective. The School of Public Policy – SPP Research Papers, 5(17), 1–16. Calgary, AB: University of Calgary. https://doi .org/10.2139/ssrn.2088960 White, M. C., Chafetz, L., Collins-Bride, G., & Nickens, J. (2006). History of arrest, incarceration and victimization in community-based severely mental ill. Journal of Community Health, 31(2), 123–135. https://doi.org/10.1007/s10900-005-9005-1 Williams, J., & Paul, J. (2008). Informed gender practice: Mental health acute care that works for women. https:// webarchive.nationalarchives.gov.uk/ukgwa/20110512085708/http:/www.nmhdu.org.uk/silo/files /informedgenderpractice.pdf World Health Organization. (2002). World report on violence and health. http://whqlibdoc.who.int/publications /2002/9241545615_eng.pdf?ua=1 World Health Organization. (2013). Global and regional estimates of violence against women: Prevalence and health effects of intimate partner violence and non-partner sexual violence. http://apps.who.int/iris /bitstream/10665/85239/1/9789241564625_eng.pdf?ua=1

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CHAPTER EIGHTEEN

Evolving Disability Scholarship and Activism in Canadian Contexts: Making Room for Intersectionality Christine Kelly

In January 2016, graduate student Navi Dhanota became the face of a precedent-setting h ­ uman rights case after months of mediation. Dhanota was a PhD student in critical disability studies at York University, a large Canadian university in Toronto. She had a long history of interacting with student services throughout her studies. In the media, Dhanota commented on being “diagnosed with six possible DSM diagnoses, none of which I identified with” to get exam-related ­disability accommodations while doing her undergraduate degree (Moore, 2016). Faced with a similar ­arduous process at York University, Dhanota filed an application with the Ontario Human Rights Commission against the school (Zlomislic, 2016). The complaint was settled – Dhanota worked with the ARCH Disability Law Centre, York University, and the Commission to collaboratively rewrite university guidelines pertaining to academic accommodations. As a result, “the required medical documentation [at York University] simply confirms that there is a diagnosed mental health disability without providing the specific diagnostic label” (York University, 2016). This application was decided on the basis of protecting students’ privacy and their right to disclose. Dhanota’s case was criticized by some conservative media figures for potentially stigmatizing disability (Gomes, 2016; Mallick, 2016). This legal decision recognizes that disability is already stigmatized and students with disabilities face numerous barriers to education because of inaccessible environments and the constant need to educate their educators. Yet in media interviews, Dhanota herself expressed discomfort with having to frame this case as a privacy issue. Dhanota (2016) (as cited in Moore, 2016) is quoted as saying, I refused to be forced into identifying my experiences using the medical model, which sees my require-

ment for accommodations as being a result of my own deficiencies. Instead, I was of the opinion that

there are external factors which could create disablement, and a psychiatric label only pathologized my experiences. (para. 7)

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For the case to succeed, Dhanota was forced to alter her frame of reference, a frame informed by critical disability politics. The subtext to Dhanota’s case, found mostly in media interviews, reveals a different analysis of the issue of medical diagnosis than merely privacy. As stated in her quotation above, Dhanota was motivated by an effort to reduce the medicalization of mental health and to disconnect accommodations from specific diagnoses. Dhanota publicly used the phrase “none of which I identified with” in relation to her assigned diagnoses (Moore, 2016). Self-identification is a key tool in disability studies and activism to prevent disabled experiences from being wholly framed in individualistic, medical ways. The legal decision relating to Dhanota’s case helps to limit the reach of the medical industry in the daily lives of students. Self-identification is premised on the notion that identities are socially mediated, multiple, and complex. Later in the same interview, Dhanota, tellingly, and like many of her contemporaries, references the phrase intersectional analysis to capture the complex interface of her experiences with disability, gender, and racialization. This term is integral to current disability politics and other social justice movements but difficult to incorporate into traditional legal and policy-style interventions. The application brought forward by Dhanota represents the old and the new of disability ­politics in Canada. Like many Canadian activists before her, Dhanota led the way through focusing on policy change and using the legal system with support from a disability organization. This approach included challenges under the Canadian Charter of Rights and Freedoms and characterized Canadian disability activism for much of the late 1980s and into the 1990s. In evaluating the legacy of Charter challenges, Vanhala (2011) found favourable court-based decisions can garner substantive media attention, but they do not necessarily create the broad systematic change many hope for. Further, as indicated by the tension related to disclosure revealed in Dhanota’s case, legal and policy channels often do not make space for the articulation of the principles that motivate an individual to launch a case in the first place. Dhanota’s case and media coverage show the ways in which the field of disability studies has undergone immense transformation in response to the challenges and opportunities presented by intersectionality. Here I seek to further document these shifts in Canada. This chapter begins by describing the changing context surrounding disability non-profit organizations and provides a general overview of disability studies and activism. Following a summary of these changes, the chapter introduces and draws on examples from a qualitative, participatory study on disability organizations and youth engagement that took place in 2014–2015. In light of the central role non-profit organizations have played in the history of Canadian disability activism, this study sought to explore how disability organizations are faring and to document ideas and experiences of diverse disabled youth that often take place outside of the non-profit infrastructure. Two case studies are detailed (an HIV organization and a disability arts organization), and themes from the youth focus groups related to disability identity and activism are outlined. The examples in this chapter present the expanding reach and forms of disability politics in Canada, highlighting the new spaces for intersectional frameworks. The attempts to de-medicalize experiences of disability and the intersectional approach to understanding gender, embodiment. and other identities highlight a complex, contemporary politics that inform (and challenge) the concept of women’s health.

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POLICY CONTEXT Non-profit organizations have new roles and challenges in Canadian (and other) contexts, conditions that accelerated during the shift to neoliberal and austerity governance models (Scott; 2003; Laforest, 2011). The descriptions here seek to capture a snapshot of the climate leading up to and during the time of the study (2014–2015), a climate that is actively evolving under new federal, provincial, and territorial leadership. Most notably, organizations with equity-seeking agendas had a very difficult time surviving (Smith, 2005) and faced high levels of scrutiny from the ­Canada Revenue Agency (CRA) for engaging in activities deemed to be “political” (Canada Revenue Agency, 2011). The Harper Government allocated a special budget to the CRA to carry out audit activities directed at charitable organizations in 2012. In a highly publicized case in summer 2014, the CRA challenged Oxfam Canada’s mandate to “prevent poverty,” suggesting Oxfam should instead reorient to only “alleviate” poverty (“‘Preventing Poverty’ not a Valid Goal,” 2014). This seemingly minor shift in wording would have substantive implications for the mission and programming of the organization as it indicates a fundamental difference about the nature of poverty and how it is reproduced. From a financial perspective, Canadian non-profit organizations historically have relied on government sources of funding. At the time of the study, opportunities to secure core funding had been reduced in comparison with previous years and often eliminated. Core funding is steady and reliable funding that covers overhead costs and that organizations autonomously allocate. Instead, neoliberal funding mechanisms prefer project-based funding. By using narrowly defined eligibility criteria and priorities, this type of funding shapes the activities of non-profit organizations and often limits advocacy and social justice activities. Project-based funding is associated with “new public management” discourses that include high levels of auditing and reporting, causing administrative burden especially among sparsely staffed organizations (Baines, 2015). These shifts profoundly affected disability organizations, especially national, cross-disability groups. From 2012 to 2014, the Social Development Partnerships Program-Disability (SDPP-D), the federal program that provided the majority of national grants and contributions related to disability, underwent a “transformation” towards a competitive funding model. This meant core funding for national disability organizations was phased out entirely in April 2015 (Council of Canadians with Disabilities, 2012; Employment and Social Development Canada, 2014). Although out of the time period of this study, the Trudeau government renewed the SDPP-D in 2017. SDPP-D is now a two-step, competitive call exclusively for national organizations “whose primary mandate is on the inclusion of people with disabilities” (Employment and Social Development Canada, 2017). Ultimately, this competition should reinstate operating funds for national disability organizations. As non-profit organizations have been behind key historic moments of disability politics in Canada, it is essential to explore how these organizations fared in this context (Neufeldt, 2003). Furthermore, the category of disability is expanding in both scholarly and policy realms, and the alternative frameworks for approaching disability are cross-fertilizing (Shakespeare, 2006), thus it is also important to explore how organizations that may not have a politicized history fared. This context provided the impetus for the study on disability organizations. The perspectives of youth were incorporated to explore disability activism happening outside the non-profit sector

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(Kelly, 2013) and address concerns about lack of leadership in Canadian disability movements (Hutchison et al., 2007).

DISABILITY STUDIES AND ACTIVISM Disability studies as an academic discipline, like other critical social disciplines, emerged alongside disability activism in a number of contexts. There are a number of central “origin stories” that have been well documented. In the United States, the Independent Living Movement is attributed to Ed Roberts and the “Rolling Quads” attending University of California at Berkeley in the 1960s and 1970s. There is also the famous sit-in in 1977 that took place in regional government offices across the United States to protest the lack of enforcement of section 504 of the Rehabilitation Act, which aimed to prevent exclusion on the basis of disability (Longmore, 2003). In the United Kingdom, the Union of Physically Impaired Against Segregation and the “social model” of disability also emerged in the 1970s (Campbell & Oliver, 1996). In Canada, a number of organizations formed in the 1980s, and the inclusion of physical and mental disabilities in the Charter of Rights and Freedoms is widely regarded as a pinnacle moment (Peters, 2003; Chivers, 2007). There were also actions taking place in groups representing mental health consumers, anti-psychiatry and other Mad movements (Reville & Church, 2012), groups of people labelled with intellectual disabilities (Park, Monteiro, & Kappel, 2003), and d/Deaf people (Skelton & Valentine, 2003), as well as health-social movements linked to specific conditions (Orsini, 2002), but it took time for the breadth of disability to move beyond a focus on physical disabilities. A number of trends demarcate the more contemporary contexts in Canada from these early ­examples. Importantly, the pressures on the non-profit sector outlined above had a significant impact on the ability of organizations with rights-based or social justice orientations to mobilize, or even survive in some cases. As with feminist movements, there have been tensions around the exclusion of people with overlapping identities (e.g., women with disabilities, disabled people of colour). While policy-based advocacy continues, new forms of disability activism are emerging that address these concerns (Prince, 2009). For example, new opportunities and avenues for disability, d/Deaf, and Mad art are emerging (Kelly & Orsini, 2016). Many disabled people and organizations are involved in broad-based social movements such as the Quebec student movement in 2012 (Blouin-Genest, 2016), Occupy Toronto in 2012 (Graham & Jackson, 2016), and the protests surrounding the G20 Summit in Toronto in 2010. Finally, the growth and maturation of the academic field of disability studies is another key trend. The social model emerging from the United Kingdom is regarded as a foundational concept in the field of disability studies (Oliver, 2004). This model distinguishes impairment (physical, biological, or mental differences) from disability (social or physical barriers), arguing physical and social barriers are what disable people. This is an important way to disrupt medically based and individualized understandings of disability, as it subverts conventional reflexes to define disability by symptoms and to treat disability as an individual tragedy without social context. While the social model helped found the field and continues to play a defining role for some scholarship and teaching, it has been critiqued on a number of fronts. Some argue it creates a false binary, ignores

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intersecting identities, does not adequately address pain, does not fully address invisible disabilities and/or people with intellectual disabilities, and overlooks the ways in which material environments and political frameworks cause disability in ways that disproportionately affect people living in poverty and the global South (Swain & French, 2000; Shakespeare & Watson, 2002; Dewsbury et al., 2004; Gabel & Peters, 2004). Indeed, the social model is but one tool (Oliver, 2004) to frame disability, and the field has evolved to add several more. Other trends in disability scholarship include the “cultural turn,” largely emanating from the United States where scholars draw on critical cultural theory to explore questions of representation, art, and embodiment (e.g., Davis, 2002; McRuer, 2006; Quayson, 2007). Of relevance to women’s health, a coherent field of scholarship that can be considered feminist disability studies has emerged. The term was coined by Garland-Thomson (2001, 2002) in pivotal works and represents a response to critiques of the social model. Feminist disability studies is associated with intersectional feminist theory (Hankivsky, 2012), wherein social inequalities are understood as interlocking oppressions (Hall, 2011). That is, sexism cannot be addressed without addressing ableism, racism, and so forth. One oppression sustains other oppressions, and experiences of these intersections cannot be teased apart. Feminist disability studies make room for embodied experiences by framing disability as material semiotic (Schriempf, 2001), where embodied experiences cannot be divided into social and biological categories. A material-semiotic approach to disability enables an exploration of pain, invisible disabilities, and other aspects of disability. Using these conceptualizations, feminist disability scholars explore topics at the intersections of disability, gender, and other identities, including reproductive rights, care and care work, sexuality, and exclusions within existing disability scholarship (Kafer, 2013). Alongside these developments in academic disability studies, there have been developments in disability activism that reflect this drive towards complexity. A group of activists from C ­ alifornia has helped to demarcate the concept of disability justice (Mingus, 2011). Disability justice builds on and responds to other frameworks in disability studies, including Independent Living. ­Disability justice centres the experiences of queer disabled people, people of colour, people living in poverty, and individuals who were previously, or continue to be, marginalized by Independent Living movements that are typically associated with white, educated men with physical disabilities. ­Disability justice pushes back against overvaluing the concept of independence and incorporates the social, political, economic, and global structures that both cause and exacerbate experiences of disability. There is a strong solidarity base to disability justice that argues all social justice movements are ­interdependent. Efforts for prison abolition, union rights, access to health care, environmental justice, Indigenous autonomy, and so forth, are inextricable from disability justice. Similar demonstrations of complexity and solidarity can be seen in evolutions of disability rights in the United Kingdom. Disabled People Against Cuts, or DPAC, came to prominence around the 2012 Paralympic Games when its direct action protests helped to educate the general public that one of the key sponsors for the games, ATOS, was also the company contracted to implement austerity cuts to health and social services. This deep irony shows how promises of inclusion embedded in Paralympic sport contrast with the material reality of life for many disabled people. Interestingly, DPAC also protested not just in front of the ATOS offices during the games but on a different occasion alongside ATOS Information and Technology workers, who were striking for a pay increase

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(“Atos Strike for Pay Increase,” 2013). This example demonstrates the nuance of contemporary, intersectional disability politics that refuse to pit marginalized groups against one another. Disability activism in Canada is also transforming in relation to multiple embodiments and ­sociopolitical barriers that limit the non-profit sector from enacting social change in traditional ways. This chapter now turns to a qualitative study to demonstrate this changing nature of disability politics in Canada. Within this context and understanding, this study considered how disability and health-related organizations in Ottawa are faring and how they engage youth. The study reveals an intersectional disability politics that can inform, and challenge, the concept of women’s health.

EXAMPLES FROM RESEARCH A participatory, qualitative study of disability organizations in Ottawa, Canada, was conducted in 2014–2015. The study included three key stages. The first was an exercise in locating and mapping disability organizations in Ottawa; 84 organizations were identified for this study. In the second stage, 25 executive directors or employees in leadership roles participated in key informant interviews between October 2014 and July 2015. In the third stage, completed simultaneously (from January to March 2015), there were five focus groups with 46 diverse youth with disabilities recruited through colleges, universities, and a social group for people with intellectual disabilities. Some of the recruitment for the youth portion took place through campus student groups, likely attracting more politicized participants. There was also a community knowledge mobilization event associated with this project that included a youth advisory committee. It is beyond the scope of this chapter to present the complete findings of the study (see Kelly, 2018, for other findings), but examples will be used to help demonstrate the changing nature of disability activism and to highlight the new spaces for intersectionality. The cases were purposively selected to demonstrate the expanding influence of disability politics (i.e., the HIV organization) as well as the shifting emphasis of disability movements (i.e., the disability arts organization), with each emphasizing various tensions and approaches. Interestingly, the cutting edge of disability politics is most apparent in the world of art instead of in rights-based organizations, perhaps indicating the limited capacity of the rights-based organizations during this time period. The youth themes help demonstrate how the perceptions and experiences of disabled youth interface with the activities and politics of the non-profit sector.

Case Study I – HIV organization HIV organizing has its own dynamic history, and one group that participated in this research study illustrates an emerging willingness of such organizations to engage with disability politics. Disability scholars such as Bell (2012) made efforts to link HIV scholarship to disability scholarship, and more recently, critical HIV scholar-activists are looking to connect with disability studies (McClelland & Whitbread, 2016). This study included a service organization for people living with, affected by, and at risk of contracting HIV that endorses a social justice orientation. The organization expanded its scope to

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work around the prevention of other blood-borne infections such as hepatitis C, reflecting political coalitions and research developments. The organization serves 400 to 450 people annually, employs 16 full-time staff, and has 75 to 100 active volunteers. The organization does public education, peer support, clinical services, and community organizing, and uses a model where people living with HIV are involved in all aspects of the organization as staff, board executives, volunteers, and service recipients. This is rare in the organizations explored in this study in terms of the strength of commitment to involving people who they serve. The organization operates with a budget of just over one million dollars, approximately 95 per cent of which is core funding from the Ontario government. It is an anomaly to have core funding that is not tied to specific programming or that does not have time constraints. The organization also receives some municipal funding and corporate and private donations, but these sources of funding are not guaranteed year to year. The organization in this study is highly intersectional in a response to reflections on early HIV activism. The organization is attuned to geopolitics by making space and programming for people living with HIV coming from African countries and other countries with high transmission rates. It is also attentive to racialization and of sexuality in terms of groups with higher risks of becoming infected. Beyond mere inclusion of diverse identity categories, the organization frames their work with a systemic analysis. For example, when discussing the concept of priority populations, the executive director commented, Our focus is definitely on HIV, but we look at the various social determinants of health. We address issues around housing, around treatment, around immigration, around racism, violence against women, homophobia. Because those are all the root causes of HIV. What puts somebody at risk are those things.

Rather than reducing individuals to biology or relying on stereotypes about populations, the executive director connects transmission risk to larger social structures. The emphasis on intersectionality and social justice is likely linked to having core funding, a model that makes space for complex mandates to evolve iteratively. At the time of the study, the organization had begun to incorporate disability as a relevant intersection to its work. This is connected to the dramatic shift in available treatments, transforming HIV for many people from a terminal, short-term illness to a chronic illness or long-term disability. This shift resulted in literal overlaps in terms of people living with HIV acquiring physical and mental disabilities related to their illnesses. The incorporation of the concept of disability is a new turn in the HIV organization. The executive director had to be convinced to participate in the research, and it is not clear if umbrella disability organizations are reaching out to include people living with HIV or their organizations. As made apparent in the interview, the organization anticipated the necessity of wheelchair access to the primary service areas when seeking a new location for their office and had future plans for improved accessibility for the entire office. The executive d ­ irector also spoke about how a number of members of the organization received provincial disability income support, demonstrating the ways in which HIV is formally recognized in policy mechanisms as a chronic illness and perhaps presenting an opportunity for coalition-building among more conventional disability categories.

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Beyond physical disability and a nascent opening to disability politics, the organization has a longer, more nuanced history of recognizing the relationships among HIV and mental health, specifically the links among stigma, depression, and anxiety. The executive director explains: When we are talking about HIV stigma, if you are someone living with HIV who has experienced what it’s like to be rejected, ostracized, beaten up, whatever it might be, because you are HIV positive and you disclose your status, that can be absolutely crippling. That’s a huge form of disability and you may not

see it in someone, but just think about the level of disability that it creates inside someone. Right? So, yes we definitely feel we are a disability organization, and we support people with disabilities regardless of whether it’s a physical disability in terms of wheelchair accessibility or not.

This brief foray represents an initial willingness to engage with disability politics, as indeed, the executive director was unaware the term “crippling” would be loaded to those engaged in disability activism. The executive director occasionally fell back on an understanding of disability as only wheelchair users rather than a broad cultural category and intersectional identity that implicates people living with HIV. Overall, this organization demonstrated a willingness to incorporate disability into the many intersections that it already accounted for in its work.

TANGLED ART + DISABILITY Tangled Art + Disability is a Toronto-based organization that features and fosters artistic excellence among people with disabilities. While this organization was not included in the Ottawa-based study introduced above, it was included as a keynote address as part of the knowledge mobilization event linked to this study. Formerly Abilities Arts Festival, the organization underwent an overhaul in 2013 which resulted in the name change (Chandler, 2015). One of the key recommendations arising from this review was to put disabled people in leadership positions, leading to the hiring of Eliza Chandler as artistic director (Chandler, 2015). It is noteworthy that Chandler is a key figure and emerging scholar in disability studies (Chandler, 2007; Chandler & Rice, 2013), demonstrating the ongoing overlaps between disability politics, art and scholarship in Canadian contexts. In its new form, Tangled centres many identities previously on the margins or even excluded from disability communities, including Mad- and Deaf-identified artists, people labelled with ­intellectual disabilities, and people with chronic illnesses. Part of the success at engaging these individuals and groups is due to Tangled’s commitment to accessibility, including financial accessibility. Access is a baseline and an ongoing line of enquiry throughout all aspects of the organization, from exploring access to events, access to non-disabled art spaces, and access in curatorial practices. In addition to diversifying who counts as disabled, Tangled also makes space for queer, racialized, and Indigenous intersections. With this approach to the audience and membership, Tangled hosts exhibits, houses an artistin-residence, has a prominent public education role related to disability and art, and, perhaps most uniquely, provides workshops for disabled artists to learn and hone their artistic practices. This

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latter aim recognizes that art programs and apprenticeships can be physically, socially, and economically inaccessible to many disabled people. In an interview with CanadianArt, Chandler (2016) (as cited in Sandals, 2016, emphasis in original) comments, If I’m disabled and I produce something it’s like, incredible, or it’s a spectacle. There is no sort of thought

that I should or I could improve my work. And maybe I can’t [do that] in the same way as somebody else—but that doesn’t mean I couldn’t or shouldn’t improve my art. (para. 14)

The skills-building efforts also challenge tendencies to frame disabled art as therapy or evidence of overcoming models, which devalues disabled artists and their creations. Tangled faces many of the same challenges as other disability organizations in terms of ­relying on project-based funding, but has had increasing opportunities because of a new interest in disability art at both the national and provincial level. Chandler’s approach is to pursue and a­ ccept as many opportunities as possible during this generous moment for disability and d/Deaf arts. Tangled has hosted numerous events and successfully infiltrated the non-disabled art scene as a ­well-regarded artist collective. It has also managed to secure gallery space (Tangled Art Gallery, or TAG), an unusual achievement in a context that limits access to infrastructure. Like many disability and Mad artists working before and outside of Tangled, disability politics are interwoven in the art, creating a distinctive and effective platform for delivering aesthetic ­political statements. For example, on 7 March 2015, Tangled collaborated with DisAbled Women’s Network Canada to host an exhibit, Bodies of Light, to celebrate International Women’s Day. This event showcased a number of short films produced by disabled women filmmakers from Canada, the United Kingdom, the United States, and Australia and featured a panel discussion. The programming included an impressive variety of intersectional identities, with the curators attentive to including racialized women, psychiatric survivors and other Mad people, francophone women, and GLBTQ people, with overlaps among these identifications. The inclusion of such diversity is a message in and of itself, showing who makes claim to disability and how disability is recrafted in the public sphere. Tangled is a paramount example of how disability politics are changing in Canada. The organization resonates with the work of disability activists as its work takes place through a non-profit organization, it seizes opportunities, and it maintains close and overlapping relationships with academia. A number of features set Tangled apart, however. Tangled works to both integrate disability into the mainstream and generate dedicated disability spaces. It is expanding what access means by pursuing intersectionality as a goal and attending to socioeconomic status. Tangled asks us to imagine disability in all contexts, in all forms, to expect people with disabilities as audience members, artists, and curators. Tangled refuses to remove or soften the radical politics and aesthetics that it represents and engages in more conventional activist work when confronted with problems in the system (e.g., it is working to change the requirements of the Ontario Disability Support Program to allow for artists to receive stipends without losing health benefits). The existence and rising prominence of Tangled serves as an interruption of the status quo both in and beyond disability politics.

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Youth: New Contexts, Similar Issues Five focus groups were held with 46 youth with disabilities in Ottawa, ages 17 to 25 (mean and median age of 22). Participants with disabilities were recruited through flyers and email announcements circulated by university and college accessibility student service offices and student groups, and through an organization serving people with intellectual disabilities. The assembled focus groups had diverse participants. There were 17 who identified as men, 26 as who identified as women, and 3 who reported other identities. Participants self-identified with a range of impairments, with the biggest representation from individuals with learning or attention impairments. Unfortunately, there were no d/Deaf participants in the focus groups, representing a gap in the recruitment techniques. Twelve participants identified as GLBTQ, 10 as members of visible ­minorities, and 5 as Indigenous (with possible overlap among these identifications). Participants were given refreshments and an honorarium for contributing to the research. The participants were asked to reflect on their experiences of disability, their awareness and involvement in disability organizations, and relevant topics that came up in the group discussion. Two themes help demonstrate how the youth who participated in these focus groups fit (or do not fit) into broader trends shaping the landscape for disability organizations and movements in Canada.

Disability and Identity Even though participants learned about the study by responding to an email or a social media post seeking “youth with disabilities,” many were uncomfortable identifying with the concept of disability, especially those with learning disabilities. This is consistent with literature exploring disabled identity among young adults (Watson, 2002). The participants with physical and sensory disabilities were the most likely to express comfort with the term disability, while the individuals with mental health concerns and learning and intellectual disabilities distanced themselves from the concept. The idea of an umbrella term of disability that encompasses a wide range of experiences was reflected by very few of the participants, although it did come up in each focus group. In fact, in responding to the questions, some participants gave examples about friends rather than their own personal experiences with disability. For example: “During high school I had this friend who had you know Down syndrome, which I am sure you all know what that looks like.” At another focus group, “I have a friend, well I am like acquaintances with this girl, who she is in a wheelchair ... I can’t actually remember what her disability is.” This dynamic is interesting for two reasons. First, it suggests distancing as a coping mechanism to keep disability separate from the self-narratives that they presented publicly in the focus group. Second, as there were approximately 18 examples of the youth participants talking about disabled friends, or attending the focus group with a disabled friend, it may suggest a broader social and cultural opening to, and de-stigmatization of, disability. The lack of exposure to a broader social and cultural category of disability did not necessarily mean participants were not open to it, as evidenced by responses to the questions that we asked towards the end of each focus group: “Do you see yourself as part of a disability community?” and “Do you relate to other people with disabilities, even if those disabilities are different from yours?” The responses to these questions were often thoughtful and differed from earlier statements in the

Evolving Disability Scholarship and Activism in Canadian Contexts

discussions. One person gave a detailed example about trying to understand someone else’s unusual accommodation request, saying “I can empathize with someone else who is in that same position. Even if the specifics of their disability are super-different from mine.” Another example from a young woman who identified as a mental health consumer: When I was in the psych ward, I met this girl who was convinced that her parents were dead most of

the time. She had a hard time understanding that when people left the room or when they went to sleep

that they were going to wake up again. At first I kind of shied away from that because I thought, okay, well it’s kind of scary. I still kind of had that signal maybe she would be violent. But then after I talked

to her more I realized she is a person that she is just as scared and confused as everyone else is here. And I can imagine how scary that would be.

Another focus group participant was recently made aware she is on the autism spectrum. She mused: PARTICIPANT: I didn’t think I was [a part of a disability community] before, but I am starting to realize that is just from coming to here, that I kind of am. There is a community, but I just got told I had this [impairment] in January.

CK: Very recent.

PARTICIPANT: Very recent. So I have been kind of like distancing myself from it. Because going to all

the appointments, [which] is stressing me out. But now I am realizing, no, I am not alone, it is kind of a community. I can relate to people.

Similarly, the majority of the youth participants were not very involved or aware of disability ­organizations in Ottawa, representing a substantive gap in efforts to incorporate youth perspectives. Part of this may have to do with changing norms around acceptability of disability and the limited capacity of struggling organizations. The youth participants recounted experiences of discrimination, exclusion and physical and social barriers, but had not turned to disability organizations to address these issues. The youth participants reported an array of issues related to disability, including difficulty obtaining proper accommodations in classroom settings throughout their education, having to interact with able-bodied friends or family members who did not understand and, at times, even believe them about their disabilities, bullying, and difficulty with romantic and sexual relationships. There were also narratives around fear of disclosure if the disability is invisible, shame, medicalization, and individualization of experiences – examples that are frustratingly similar to issues raised by previous generations. The youth participants typically dealt with these issues individually, or with help from supportive family and friends, and rarely sought support from disability organizations. In fact, the most common engagement with disability organizations was as volunteers, again contributing to the sense that disability is other to the self. Specific barriers were most often addressed through individual self-advocacy rather than collective action. The groups demonstrated a nascent sense of community, perhaps nurtured directly by the focus group discussions, with a few exceptions. Broader and previous histories of disability

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activism did, however, form the backdrop to these efforts. Participants referenced the law and knew that they were entitled to accommodations at school and work, achievements of activists who came before. The youth with disabilities continue to face numerous barriers in their daily lives and in multiple contexts, and they used self-advocacy that draws upon a broader history of disability activism to address these situations. Like third wave feminists (Bromley & Ahmad, 2006; Mitchell & Karaian, 2005; Pinterics, 2001), they also engaged in new forms of activism that reflect their context.

Disability Movements, Activism, and Advocacy The youth participants ranged from openly identifying as activists in a broader disability justice movement to less open identifications. Likely because some recruitment was through student groups with a strong sense of radical politics, some participants had a clearer sense of disability activism. One participant noted: I mean self-advocacy and just like that individual thing is super important. Then I also consider myself

part of a larger more, I guess politically structured, disability movement and that came pretty naturally out of my involvement with queer activism and stuff like that ... I have been involved with leftist pro-

gressive groups and things like that. I have done work in that kind of thing. And just in general working to talk about ways in which people are discriminated against and marginalized. And for me disability

is a big part of that. When I am in a different group talking about oppression and I feel like they aren’t

acknowledging disability as part of that. I very much make sure to push disability into the conversation. So I guess I am part of a political or activist disability movement.

And another, “I am part of an intersectionalist activist movement, to use the big theory phrase.” Some participants identified ways that they contributed for justice for disabled people but didn’t have such an explicit affiliation with a movement. For example, one young woman explained how she saw her individual actions linked to broader goals: PARTICIPANT: I think movement would be interpreted a little differently as well. Just if you are vocal

about even among a group of us like explain your situation with disabilities or problems. Then those people understand and that will slowly trickle outwards.

CK: So, you are making a change? Without necessarily being in a big group somewhere?

PARTICIPANT: Yeah, you make those little changes, like end stigma in small circles and eventually allow other people [to] understand, oh don’t make that joke, and then that person will understand, and then that person, and another friend, and it will go outwards. I think that is just another way of being part of movement.

Another participant commented, “High school is what showed me because I have ADD I feel a bit of a responsibility to help other people with more severe disabilities like in my volunteering and my career choice.” There were examples about “speaking up” and “saying something” when witnessing a distressing situation related to themselves or another person with a disability.

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This was a difficult question in the focus group with people with intellectual disabilities. When looking at a picture of a protest march, one man commented: “I sit in a protest downtown all the time,” while the other three indicated that they did not. With further explanation and discussion, another woman indicated, “I treat people equal,” and a third young woman said: PARTICIPANT: I can see me being an advocate. CK: Okay, in what way?

PARTICIPANT: Telling everybody about me.

In this small group, the participants with intellectual disabilities had a strong sense of community and were more engaged with disability organizations than the university and college-based groups, but perhaps had even less exposure to a politicized notion of disability. This could be ­attributed to the prominence of student politics in college and university settings, helping to create a frame of reference that makes disability politics possible, although perhaps not popular. There were, of course, participants who did not identify as activists or as part of a movement, and even further, sought to hide their disabilities when possible. One participant said, “In terms of [being] part of the movement. I don’t think I am. Just in the sense that I worked in an organization in which I sort of silence myself on it. I silence it and keep it close; no one knows.” The participants represented a range of engagements – from involvement in broad-based, ­intersectional student politics to individual actions online or in-person seeking change for other people with disabilities to those who distanced themselves from politicized notions of disability. This differs from previous generations in one notable way. None of the 46 participants articulated a sense of being a part of a distinct disability movement that is separate from other axes of justice and oppression. None were involved in, and very few were even aware of, the national disability rights organizations that led precedent-setting challenges under the Charter of Rights and Freedoms and other important disability actions. Indeed, the participants in this study suggest a renewal of disability activism in Canada characterized by individual self-advocacy and/or involvement in intersectional disability justice activities.

INTERSECTIONAL AND INTERGENERATIONAL POLITICS As we piece together these histories, contexts, and case studies, a distinct picture begins to emerge: disability activism is transforming in light of current socioeconomic realities. As historic organizations struggle, there is a rise in individual, radical, arts-based, and other forms of action outside these organizational structures (see also Kelly, 2013). These cases highlight new spaces for ­expressions of gender and intersectionality within and outside of disability and health-related o­ rganizations. Further, the cases help to demonstrate how the precarity that characterizes disability organizations in contemporary contexts also generates creative responses to disability outside of this sector, and such creativity is embedded in intersectional approaches to disabled embodiments. As the category of disability expands in both theoretical and policy definitions, other groups are finding room to consider and express disability politics, as was the case with the HIV group.

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This was also the case with some of the disabled youth participants, many of whom have learning disabilities, mental differences, and autism, previously underrepresented groups at the forefront of an image of “disability” predicated on wheelchair users. Tangled perhaps best encapsulates the changes taking place in Canada and elsewhere, demonstrating the links among disability studies, the non-profit sector, art, and intersectionality. The openness that characterizes Tangled is an ­essential feature to capture the activities and complex identities of young people with disabilities. The youth in this study did not have much awareness or engagement with disability organizations yet still expressed politicized moments of self-advocacy against barriers linked to disability and even moments of intersectional politics through student groups. It is understandable why the activities of youth are often overlooked and excluded from our accounting of Canadian disability movements because it is more difficult to locate them. It is much easier to focus on organizations with websites, public figures, and media presence rather than individual stories of advocacy, blog posts, or other activism interwoven in people’s lives. As with any movement, there remain tense moments of exclusion and uncomfortable examples of de-politicizing disability. This chapter focused on two of the most promising disability organizations that help represent a space for disability grounded in intersectional politics of inclusion. There were other organizations in this study that followed historic legacies of disability rooted in a charity model. There were organizations that are intrinsically involved and even at the forefront of advocacy and policy consultation related to disability, representing and shaping disability in the public sphere. One organization, for example, sometimes included disabled people and covered policy topics in nuanced ways but was funded heavily through charitable donations. Charitable donations are not in themselves problematic, but the mechanisms used to gather funding in this case relied on marketing around messages of pity and cure. In moving forward documenting disability movements in Canada, it becomes essential to consider the role of intergenerational relations as the activists who won many key challenges in an earlier era quite literally age, and as many older people age into disability in later life ( Jönson & Larsson, 2009). The interplay among youth and older people with disabilities in activist settings is a frontier that requires more attention but suggests a potential for an intergenerational, coalitional embodied politics of transformation. Reville and Church (2012) provide an important example of this type of work through their reflections on a photo of Toronto-based Mad activists of various ages, histories, and social locations. Reville and Church (2012) describe a generational shift in the psychiatric survivor movement, as the ’60s-era strategies yield to younger

activists. While the dominance of psychiatric knowledge and the poverty of community life remain

disturbingly unchanged, four decades of activist work has enriched – and complicated – the movement in terms of leaders and their subjectivities, languages, issues, organizations, and allies. (pp. 199–200)

The authors highlight the role of Mad studies and the university as a renewed site of political mobilization and education for the younger activists. Notably, Reville and Church (2012) do not present a utopian documentation of a community without tensions and disagreements. In fact, they carefully comment on a number of divides around language, identification, and tactics and outline how these tensions indicate a maturation of Mad activism.

Evolving Disability Scholarship and Activism in Canadian Contexts

The transformation and tensions outlined by Reville and Church (2012) in the context of Mad activism are reflective of the trends observed through this study in relation to a broader notion of disability activism. In reflecting on the examples in this chapter, it is clear that we can find disability politics in people and places that we may not expect – among individual youth, HIV activists, and artists; online; amid broad-based movements; and in the spaces in between. The new tactics show us the creative possibilities that arise from embracing a complex, intersectional, and coalitional politic, a politic that will continue to transform the meanings and experiences of disability, health, and identity in Canada.

DISCUSSION QUESTIONS 1 Had you heard of Navi Dhanota before? What do you think of her human rights ­application? Why do you think her settlement was criticized by some? 2 Kelly describes how disability studies has “undergone immense transformation in ­response to the challenges and opportunities presented by intersectionality.” What does the author mean by this? How do these changes mirror and diverge from ­evolutions in other areas of health? 3 The study in this chapter reports on a wide array of non-profit organizations included as disability and health-related organizations. How did this challenge your definition of disability? 4 What are the advantages and disadvantages of social movement activity through the non-profit sector in Canada? What are the advantages and disadvantages of the ­individual style of activism and advocacy represented by the youth participants? 5 How do you think disability activism will fare in a COVID-19 context?

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Evolving Disability Scholarship and Activism in Canadian Contexts Kelly, C., & Orsini, M. (Eds.). (2016). Mobilizing metaphor: Art, culture and disability activism in Canada. UBC Press. Kelly, C. (2013). Towards renewed descriptions of Canadian disability movements: Disability activism outside of the non-profit sector. Canadian Journal of Disability Studies, 2(1), 1–27. http://cjds.uwaterloo. ca/index.php/cjds/article/view/68. https://doi.org/10.15353/cjds.v2i1.68 Laforest, R. (2011). Voluntary sector organizations and the state: Building new relations. UBC Press. Longmore, P. K. (2003). The Disability Rights Moment: Activism in the 1970s and Beyond Why I burned my book and other essays on disability (pp. 102–115). Temple University Press. Mallick, H. (2016, January 15). Why keep mental disability a secret? Toronto Star. https://www.thestar.com /news/gta/2016/01/15/why-keep-mental-disability-a-secret-mallick.html McClelland, A., & Whitbread, J. (2016). PosterVirus: Claiming sexual autonomy for people with HIV through collective action. In C. Kelly & M. Orsini (Eds.), Mobilizing metaphor: Art, culture and disability politics in Canada (pp. 76–97). UBC Press. McRuer, R. (2006). Crip theory: Cultural signs of queerness and disability. New York University Press. Mingus, M. (2011). Changing the framework: Disability justice. https://leavingevidence.wordpress. com/2011/02/12/changing-the-framework-disability-justice/ Mitchell, A., & Karaian, L. (2005). Third wave feminisms. In N. Mandell (Ed.), Feminist issues: Race, class, and sexuality (pp. 58–82). Prentice Hall Canada. Moore, R. (2016, January 6). Psychiatric labels get tossed with new academic accommodations criteria. Excalibur. https://www.excal.on.ca/uncategorized/2016/01/06/ psychiatric-labels-get-tossed-with-new-academic-accommodations-criteria/ Neufeldt, A. H. (2003). Growth and evolution of disability advocacy in Canada. In D. Stienstra & A. Wight-Felske (Eds.), Making equality: History of advocacy and persons with disabilities in Canada (pp. 11–32). Captus Press. Oliver, M. (2004). The social model in action: If I had a hammer. In C. Barnes & G. Mercer (Eds.), Implementing the social model of disability: Theory and research (pp. 18–31). The Disability Press. Orsini, M. (2002). The politics of naming, blaming and claiming: HIV, Hepatitis C and the emergence of blood activism in Canada. Canadian Journal of Political Science, 35(3), 475–498. https://doi.org/10.1017 /S0008423902778323 Park, P., Monteiro, A., & Kappel, B. (2003). People first – The history and the dream. In D. Stienstra & A. WightFelske (Eds.), Making equality: History of advocacy and persons with disabilities in Canada. Captus Press. Peters, Y. (2003). From charity to equality: Canadians with disabilities take their rightful place in Canada’s constitution. In D. Stienstra & A. Wight-Felske (Eds.), Making equality: History of advocacy and persons with disabilities in Canada (pp. 119–136). Captus Press. Pinterics, N. (2001). Riding the feminist waves: In with the third? Canadian Woman Studies, 21(4), 15–21. https://doi.org/10.1108/rr.2001.15.7.21.376 “Preventing poverty” not a valid goal for tax purposes, CRA tells Oxfam Canada. (2014). CBC News. http://www.cbc.ca/news/politics/preventing-poverty-not-a-valid-goal-for-tax-purposes-cra-tells-oxfam -canada-1.2717774 Prince, M. J. (2009). The Canadian disability community: Five arenas of social action and capacity. Absent citizens: Disability politics and policy in Canada (pp. 112–133). University of Toronto Press. Quayson, A. (2007). Aesthetic nervousness: Disability and the crisis of representation. Columbia University Press. Reville, D., & Church, K. (2012). Mad activism enters its fifth decade: Psychiatric survivor organizing in Toronto. In A. Choudry, J. Hanley, & E. Shragge (Eds.), Organize! Building from the local for global justice (pp. 189–201). PM Press. Sandals, L. (2016). 8 things everyone needs to know about art and disability. CanadianArt. http:// canadianart.ca/features/7-things-everyone-needs-to-know-about-art-disability/ Schriempf, A. (2001). (Re)fusing the amputated body: An interactionist bridge for feminism and disability. Hypatia, 16(4), 53–79. https://doi.org/10.1111/j.1527-2001.2001.tb00753.x

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Christine Kelly Scott, K. (2003). Funding matters: The impact of Canada’s new funding regime on nonprofit and voluntary organizations. https://www.ccsd.ca/index.php/evidence/research/funding-matters Shakespeare, T. (2006). Disability rights and wrongs. Routledge. Shakespeare, T., & Watson, N. (2002). The social model of disability: An outdated ideology? Research in Social Science and Disability, 2, 9–28. https://doi.org/10.1016/S1479-3547(01)80018-X Skelton, T., & Valentine, G. (2003). Political participation, political action and political identities: Young D/deaf people’s perspectives. Space & Polity, 7(2), 117–134. https://doi.org/10.1080/1356257032000133892 Smith, M. (2005). A civil society? Collective actors in Canadian political life. Broadview Press. Swain, J., & French, S. (2000). Towards an Affirmation Model of Disability. Disability & Society, 15(4), 569–582. https://doi.org/10.1080/09687590050058189 Vanhala, L. (2011). Making disability rights a reality? Disability rights activists and legal mobilization in Canada and the United Kingdom. Cambridge University Press. Watson, N. (2002). Well, I know this is going to sound very strange to you, but I don’t see myself as a disabled person: Identity and disability. Disability & Society, 17(5), 509–527. https://doi.org/10.1080 /09687590220148496 York University. (2016). New documentation guidelines for accommodating students with mental health disabilities [Press release]. https://news.yorku.ca/2016/01/06/new-documentation-guidelines-for-accommodating -students-with-mental-health-disabilities/ Zlomislic, D. (2016, January 12). York University student wins mental-health fight. Toronto Star. https:// www.thestar.com/news/gta/2016/01/12/york-university-student-wins-mental-health-fight.html

CHAPTER NINETEEN

Understanding Migrant Women’s Health: Looking through Intersectional, Gendered, and Human Rights Lenses Bilkis Vissandjée and Ilene Hyman

This interactive journey is important in order to truly feel and appreciate the range of gendered challenges related to migrants’ expectations and opportunities ... We hope that it will open up space for multi-stakeholder actions and partnerships that address the gender, migration and development nexus ... But most importantly, we hope it will provide an opportunity to individually reflect on the large impact that gender has on people’s experiences of migration. – Theodora Suter, International Organization for Migration (IOM). Gender Coordination Unit. March 8th, 2017

INTRODUCTORY REMARKS: UNDERSTANDING MIGRANT WOMEN’S HEALTH Canada’s commitment to humanitarian values and its need to sustain social and economic bases in face of declining rates of natural population growth will ensure that migration will continue to play a major role in its evolution. Given the diversity of risks and needs that women may encounter on migratory journeys, this chapter discusses the intersectional determinants of migrant women's health, highlighting the roles of gender as one of these determinants of health, human rights, and social and health policies in the pathways for coherent and sensitive integration. In this chapter, we use the term migrant women to include any women born in a country other than the one in which they reside. While this term is meant to encompass all immigration statuses, we acknowledge the fact that migrant women are neither a homogenous nor a monolithic group. An understanding of the dynamics and interactions that promote access to health and social justice with respect to migration experiences is necessary in order to define and better understand

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individual women’s trajectories, situations of vulnerability, and resilience capabilities. We use a gendered sociopolitical lens that recognizes the contributions of intersectionality and larger systems of oppression in shaping migrant women’s social identities and experiences (Bonmati-Tomas et al., 2016; Hinze et al., 2012). Social and health policies aimed at eliminating systemic barriers to economic, political, and social integration are indispensable prerequisites for migrant women’s health and well-being. We adhere to the view that migration and the adaptation processes are not gender-neutral phenomena. These processes do not account for equity in access to resources with potential conflicts engendered by exposure to differing sociocultural norms. We argue that sociopolitical, gendered, social determinants of health (SDOH) and human-rights approaches are essential to address and respond to migrant women’s health issues. They allow for a focus on intersecting structural factors, determined by economic and social policies and inequalities with a considerable health impact (Hankivsky, 2014; Goicolea et al., 2017). This chapter begins with an overview of the health of migrant women in Canada and describes the high risk of declining health status and adverse health outcomes, often related to their newcomer status or a limited understanding of the language spoken in the host society. Two specific examples of migrant women’s health issues are provided. The first relates to the exposure to intimate partner violence (IPV) of some women and illustrates the effect of selected government policies on the risks and responses to IPV in presence of challenges related to migration trajectories, differing cultural values, and language barriers. The second refers to the perceptions of health care and social service providers and their discomfort in addressing adequately and coherently the complex needs of women who have undergone female genital cutting (FGC). Such knowledge gaps may lead to limited access to care in a timely manner, with potential deleterious health outcomes. We conclude by acknowledging the need to recognize and address migrant women's experiences as a distinct SDOH. We also highlight the gaps in migrant health research that need to be addressed to properly consider migration as a SDOH and thus to better understand the challenges and risks to health faced by migrant women during their migration process.

THE EXPERIENCE OF MIGRATION: THE “HEALTHY IMMIGRANT EFFECT” Migration is a constant in human history. It is related to livelihoods, culture, and disastrous events, as well as exile (McAuliffe et al., 2018). Central to any discussion of migration are the people who migrate – who they are, how they migrate, and why they migrate, issues often deeply connected to the circumstances in which they find themselves and the degree of choice they have in contemplating and undertaking migration (McAuliffe et al., 2018). There is increasing recognition of the importance of understanding how migrants contemplate migration options (including not migrating) and undertake migration journeys. The notion known as the healthy immigrant effect is believed to result from, in part, a self-selection process in which people who are able and motivated to move do so, while those who are sick or disabled, or who reside in institutions, do not (Hyman, 2007; Omariba et al., 2014; Vang et al., 2015). The healthy immigrant effect does not usually apply to refugees. While voluntary migration occurs mainly in pursuit of opportunities regarding education,

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employment, or a higher standard of living, forced migration tends to occur in circumstances of natural disaster or sociopolitical conflict. However, this group of population is at higher risk of past exposure to trauma, harmful living conditions, precarious financial status, disease exposures, and limited access to health care services (Pottie et al., 2011). Depending on the category of entry as a migrant person and associated social determinants of health, stress related to the process of settlement in a new environment tends to vary. These experiences and migration trajectories will likely affect integration capacities, which might result in poorer health outcomes (Becker & Ferrara, 2019). Sustained exposure to a stressful environment, such as precarious conditions related to migration, has been documented as one of the predictors of depression (Vissandjée et al., 2004; Wallace et al., 2017). The healthy immigrant effect may also be related to the increased reports of chronic diseases after five to ten years in the host society. It may also be partly the result of procedures that may exclude immigrants with serious medical conditions while encouraging those with higher education, language ability, and job skills. The latter characteristics are associated with social and economic integration and positive health outcomes (Omariba et al., 2014; Vang & al., 2015; Vissandjée & Battaglini, 2010). It is important to highlight that while medical examination is a mandatory component of the Canadian immigration selection process, refugees are protected from exclusion or deportation under the Immigration and Refugee Protection Act proposed in 2002 (Pottie et al., 2011).

THE SOCIOPOLITICAL CONTEXT OF MIGRATION Social and cultural rights are long entrenched in Canadian history, including several Acts of Parliament protecting selected groups at risk of discrimination. In 1970, the Royal Commission on the Status of Women enshrined women’s rights within the Canadian Constitution, a cornerstone from which a framework of legal and legislative advancements has been built. The Canadian Human Rights Act of 1985 identified 11 grounds for discrimination in Canada, including national or ethnic origin, skin colour, religion, age, sex, sexual orientation, marital status, family status, disability, and a conviction for which a pardon has been granted or a record suspended. In 2016, the government of Prime Minister Justin Trudeau amended the Act to add and include “gender identity or expression.” In 1988, the Canadian Parliament voted for its Multiculturalism Act, thereby providing a legal framework and federal responsibilities towards promoting intercultural relations and social inclusion to the diverse fabric of the Canadian population. It also included a provision for funding to mainstream institutions such as police forces, hospitals, and schools to implement multiculturalism policies and programs aimed at reducing barriers to access (Policy Research Initiative, 2009). Though the Canadian health care system has evolved, the principles behind it remain unchanged: to provide “universal coverage for medically necessary health care services ... on the basis of need, rather than the ability to pay” (Health Canada, 2019). Quebec’s law on health and social services places its population at the centre of care and enumerates their rights (LégisQuébec, 1991), ensuring that informed consent is obtained before providing care. A major upturn of the healthcare system concerning migration was the amendment, in 2008, of Quebec’s legislation, “to

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foster, to the extent allowed by the resources, access to health services and social services in their own languages for members of the various cultural communities of Québec” (LégisQuébec, 1991, revised in 2008). Successful immigrant integration and inclusion in Canada remains challenging to policymakers, as well as institutional and community-sector players. The literature describes integration as a two-way interactional process between a host society and “migrant populations” (regardless of generation) influenced both by institutional structures and societal attitudes on the one hand, and migration factors such as human and collective social capital on the other. Good to excellent health status of migrants is both a requisite and an outcome of successful integration and inclusion. However, while migrant populations try to navigate the challenges of creating a life in a new country, they may face multiple barriers, such as language, precarious life conditions, or limited health literacy, which can limit access to health services (Clarke & Vissandjée, 2019; Vang et al., 2015). While health care policies are essential in maintaining and promoting the health and well-being of migrants, they may lead to increased health disparities. Sensitive practice will enhance the use and benefits of health resources to migrant populations, especially if values, cultural beliefs, language, and health literacy, among other issues, are simultaneously addressed (Clarke & Vissandjée, 2019; Goicolea et al., 2017; Wickramage et al., 2018; Vissandjée et al., 2014).

IMMIGRATION EXPERIENCE: A CRUCIAL SOCIAL DETERMINANT OF HEALTH It is well established that health is largely influenced by a wide range of social and economic factors, and thus health promotion and policy must not be limited to biomedical- and behaviouralrisk-factor approaches (Aroian et al., 2016; Hyman & Jackson, 2010; Vissandjée & Battaglini, 2010). The World Health Organization’s (WHO) Commission on the Social Determinants of Health (CSDH) further distinguishes between structural and intermediary determinants. The former includes government policies (macroeconomic, social, and public) that give rise to a set of unequal socioeconomic positions that intersect with a variety of identities to affect equity in health and well-being. Research on migration and health identifies the dynamic intersection of economic, sociocultural, linguistic, and political determinants on migrant women’s health and barriers for help seeking. Selected sociocultural determinants include length of stay in the host country, language, social networks, discrimination, and stressful events affecting the very experience of migration ­(Aroian et al., 2016; CSDH, 2008). The interlinked nature of determinants such as gender roles and socioculturally dictated responsibilities, an inherent part of an integration process to a new country, can be uplifted through a sense of resilience and empowerment (Ponic et al., 2014). Challenges associated with inequalities do not necessarily preclude women from responding to and embracing opportunities to improve their living conditions, thereby empowering themselves and strengthening their capacities to become the primary agents of their own lives (Clarke & Vissandjée, 2019). Advancing health promotion requires a better understanding of such intersecting gendered SDOH with a particular focus on education, health literacy, and employment as overlapping factors leading to successful integration experiences.

Understanding Migrant Women’s Health

Canadian immigration policy increasingly selects “flexible” immigrants based on their human capital, which can lead to strategy and decision making that result in inequalities within the selection process of immigrants. This was reported in Quebec through the adoption of Bill 9 in 2018. This Act aims to increase socioeconomic prosperity and to better address labour market needs through the successful integration of immigrants (National Assembly of Quebec, 2019). Applicants for permanent residency in Canada who speak French or who have specific, in-demand qualifications and skills could then be favoured, as they would better integrate into Quebec’s society. Given that Canadian immigration policy tends to favour immigrants with high levels of experience and education, particularly in certain in-demand industries, there is a potential for increased risk of discrimination and inequality in the selection processes, which may negatively impact family reunification. As such, for migrant women employed in low-skilled jobs transitioning to a new country with limited or no social protection, technological advances may be more of a threat than an opportunity; at any point, they may find themselves competing with the current era of increased automation for their livelihood. A prominent gender-based barrier to employment for internationally educated immigrants is limited financial capacity compounded by limited knowledge of professional resources available to them according to their previous training and of the credential verification process (Covell et al., 2016). Language barriers remain a prime obstacle to accessing and receiving adequate health care services and have been associated with declining health outcomes. Because knowledge of English or French is one of the immigrant selection criteria in Canada, women with refugee status are often more vulnerable than immigrant women to the effects of limited language proficiency (CIC, 2018; Pottie et al., 2011; Vissandjée & Battaglini, 2010). For quality of care in all settings, verbal communication is essential. Language is an important vehicle to ensure discussions of informed consent and respect for patient dignity. Language is a crucial medium for understanding one’s needs, especially those relating to personal identity, as well as being the basic means through which emotions, complex thoughts, beliefs, and values are experienced and expressed (Wolz, 2015). Considerable efforts have been made using language to improve health care access, such as increasing interpreter services across Canada. However, those services show inconsistent use of interpreters, a lack of knowledge among service providers regarding use of interpreters and inconsistent policies to support adequate, coherent, and timely access. These strategies should go beyond a simple translation of technical words as it has been documented that language cannot be fully understood without addressing cultural specifics. Cultural values, ways of thinking and living may affect the understanding or interpretation of a word, therefore acting as a barrier to effective communication. The discrepancies in the interpretation of selected vocabulary within the languages pose an extra challenge to health care providers, and linguistic distance can compromise the “need to understand each other,” a vital imperative that stems directly from health care providers’ ethical norms and codes of conduct (Vissandjée et al., 2014; Wolz, 2015). These barriers, particularly in primary and preventive care, have been associated with stressful situations for both users and caregivers. Examples include increased overall cost of care associated with the need for higher-intensity services and longer clinical encounters, which have not necessarily resulted in satisfactory care (Vissandjée et al., 2014; Wolz, 2015). These barriers can also lead to misdiagnosis, noncompliance to treatment,

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dissatisfaction regarding the quality of care, and delays in seeking care with the consequent worsening of the health condition, thereby increasing health inequalities. This attests to a form of discrimination based on language and, as such, a violation of human rights (Clarke & Vissandjée, 2019; Wolz, 2015).

IMMIGRATION: INTERSECTING GENDERED AND HUMAN RIGHTS PERSPECTIVES Newcomers to Canada generally fall into two broad classifications: permanent residents and temporary residents. The former group comes to Canada with the objective of resettling, while the latter comes to visit, study, or work. Permanent residents in Canada fall into different categories – economic class, family class, and refugees – depending on their reasons for immigrating. Refugees have usually fled their home countries because of serious human rights abuses such as conflicts, wars, and persecutions (Citizenship and Immigration Canada [CIC], 2018). The gendered nature of migration is increasingly apparent in the diversity of countries of origin. Immigrant selection policies may act to reinforce gendered norms and male hegemony, creating and/ or reinforcing patriarchy in ways that disadvantage and harm women post-migration ( Jayasuriya-Illesinghe, 2018). The use of a points-based system in the selection of skilled migrants has economic interests at its core, meant to favour individuals with qualities believed to be associated with economic success (i.e., formal education and work experience), certain specified, preferred occupational skills, and English- or French-language competency. Ascribing commodity values to women and men based on their potential contribution to the economy sustains a certain form of exclusion and differential treatment of individuals who are deemed less valuable to the labour market, thereby failing to eliminate the very biases that it sought to eliminate from the immigration system (Dobrowolsky, 2010). From a human rights perspective, one should have access not only to health care but also to the underlying determinants of good health (Singer et al., 2017), such as rights that are (a) universal, they belong to all humans by virtue of being human; and (b) inalienable, they have not been granted by a particular source and hence cannot be revoked by any agency whatsoever (United Nations Population Fund [UNFPA], 2005). The Canadian government has signed the Universal Declaration of Human Rights, the International Covenant on Civil and Political Rights, and the International Covenant on Economic, Social, and Cultural Rights and has continually endeavoured to reduce health inequities and social injustices by alleviating health care barriers, especially for vulnerable populations such as migrant women (Braveman, 2014; Eleftheriadis, 2012; Galea & Annas, 2016). A rights-based approach takes into consideration the social, political, and structural determinants that contribute to health inequities, benefits clinicians, public health professionals, civil society actors, and, most importantly, members of vulnerable groups by providing several instruments to diminish the existing health inequities. Benefits include (a) an increased awareness of the contribution of social, political, and structural determinants to health; (b) findings that point to the need for researchers and health care professionals to intervene in people’s lives through innovative

Understanding Migrant Women’s Health

interventions; and (c) collaborative work at multiple levels that seeks to change structures and institutions that heighten health inequities (Singer et al., 2017). In fact, if questions of SDOH, cultural beliefs, intersectionality, and heterogeneity of the migration experience are not addressed adequately, any health encounter may increase the chances of vulnerability, resulting in the violation of human rights (Goicolea et al., 2017; Hankivsky & Christoffersen, 2008; Vissandjée & Hyman, 2011). While health care providers defend access based on human rights values, political and institutional regulations limit it (Ruiz-Casares et al., 2013). Although Canada’s health policy promotes a universal health system, public health insurance is available only for Canadian citizens and permanent residents, resulting in inequitable access to health resources. A nuanced conception of human rights simultaneously argues for a universal human right to health without compromising the acknowledgement of variations in needs and the perceptions of these rights across SDOH (CSDH, 2008; Human Rights Journal, 2017). If the ultimate aim is to derive, implement, and sustain optimally pragmatic, accommodative, and relevant policies supporting migrant women and their health care needs, a human rights-based approach that accords due importance to the intersectional dynamics is crucial.

IMMIGRATION AND THE RISK OF INTIMATE PARTNER VIOLENCE The WHO (2002) defines violence as the intentional use of physical force or power, threatened or actual, against oneself, another person, or against a group or community, that either results in or has a high likelihood of resulting in injury, death, psychological harm, mal-development, or deprivation. Studies have consistently shown that women, compared to men, experience higher rates of disability and illness, battery and sexual assault, depression, post-traumatic stress disorder (PTSD), and suicide attempts. These gender differences reflect, in part, differences between women and men in the predisposition to some mental illnesses, as well as differences in social conditioning. Findings suggest that the risk of IPV among immigrant women in Canada increases with length of stay (Hyman et al., 2006). A study of Ethiopian immigrants in Toronto identified post-migration changes, including loss of social support, income, and status, and changes in gender roles as affecting marital relationships both positively and negatively (Hyman et al., 2008). Prevailing community norms that perpetuate gender inequality and male domination and post-migration stresses were identified as key determinants of IPV in the Tamil community (Hyman et al., 2011). Government policies that tie a woman’s immigration status to her male partner’s status, such as the former two-year conditional permanent residency rule in which women’s residency in Canada was conditional on remaining in a conjugal relationship and living with their sponsor, (CIC, 2013) contributed to the risk of IPV in migrant communities. This policy allowed abusive male sponsors to exert control over women by threatening to withdraw their sponsorship. IPV, physical, emotional, sexual, verbal, or economic abuse, have been identified as major threats to immigrant women sponsored by their spouses and admitted through the family class immigration pathway. Stress experienced during the process of integration to a new society may exacerbate marital tensions

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and contribute to violent behaviour ( Jayasuriya-Illesinghe, 2018). Migrant women experiencing IPV face multiple barriers in seeking help, including lack of knowledge on their social and legal rights, fear of being deported if sponsored by an abusive spouse, and lack of awareness of available resources (Guruge, 2012; Okeke-Ihejirika, 2018). They are at a high risk of economic dependency and poverty because they may only be able to access temporary, unskilled, and precarious work. The complexity of post-migration contexts, which may lead to shifts in power dynamics in the relationship, can increase migrant women’s vulnerability to IPV. However, we consider that beyond women’s post-migration conditions, pre-migration and border-crossing experiences can also significantly influence how women will define, experience and respond to any form of abuse. Selected women’s perceptions of IPV may be shaped by their home country’s anchored cultural beliefs and socially assigned gender roles, which can result in decisions such as staying in an abusive relationship for fear of bringing shame on their family. Pre-migration or border-crossing traumas such as rape or torture in a context of conflict or war can highly increase women’s vulnerability to further acts of violence and lead to an absence of help-seeking behaviours. Such situations require a sensitive understanding of how pre-migration, border-crossing, and post-migration experiences interact and act together to shape migrant women’s vulnerability and resilience to IPV (Guruge, 2012; Hyman & Vissandjée, 2020; Lapierre et al., 2020; Okeke-Ihejirika, 2018). Considering that not all women experience, perceive, and respond to violence equally and to the same extent, a “focus on diversity within and between groups, shared experiences within and across groups, and the intersections of multiple sites of privilege and oppression” is essential to reduce health inequalities (Guruge, 2012, p. 42; Hankivsky, 2014).

IMMIGRATION AND WOMEN WHO HAVE UNDERGONE FEMALE GENITAL CUTTING The practice of FGC varies from extracting blood from the clitoris or hood to an extensive process in which tissues are removed and the vaginal orifice is narrowed. Variations of FGC are reported as being practiced in at least 29 countries in Africa, parts of the Middle East (such as Iraq and Yemen), and Asia (such as India, Indonesia, and Malaysia) (Costello, 2015; Johansen et al., 2018). It is most often performed on girls between the ages of five and eight but can be performed as early as the first week of life and as late as the time of marriage (usually in the teens). FGC practices hold many cultural meanings, including but not limited to the preservation of group identity, a rite of passage ensuring social transition from one status level to another, preservation of virginity and family honour, and the furthering of marriage goals such as the enhancement of sexual pleasure for men (Costello, 2015). Depending upon the type of FGC performed, the expertise of the practitioner, and the conditions under which it was performed, short- and long-term health risks can occur, such as chronic genital and urinary tract infections, pain during menstruation or sex, increased risk of encountering complications in childbirth, and depression and PTSD ( Johansen et al., 2018). As a result, health care and social service providers are exposed to a diversity of lived experiences associated with the physiological, psychological, and socioeconomic impacts of FGC. Failure to properly address and understand this practice, in terms of both its medical impacts and

Understanding Migrant Women’s Health

its cultural motivations, is a significant barrier to the health care of migrant women and leads to health inequities. Ongoing migration to Canada from a wide variety of countries has led to an increased number of women and girls who may have undergone FGC or who are at risk of undergoing such procedures. FGC constitutes an extreme form of discrimination against women and girls and is recognized worldwide as a human rights violation. To this extent, FGC has been outlawed and considered a criminal offence under the Canadian Criminal Code since 1997 (Vissandjée et al., 2014). This practice is often understood in Canada as a form of gender-based violence that often results in unjustifiable consequences among girls and women. Yet these practices are culturally engrained in traditions with complex sociocultural meanings and attributed to a combination of contextual factors stemming from gender inequality. FGC is a complex experience that raises ethical, cultural, legal, and medical challenges for health care providers in providing safe, gender sensitive, and nonjudgmental care (Costello, 2015; Vissandjée et al., 2014). Limited knowledge among health care providers regarding the practice itself and the delicate and complex nature of care required have been documented. Those gaps in knowledge can result in the discomfort of health care providers, limited understanding of cultural nuances and complexities, and feelings of stigmatization and uneasy experiences regarding the quality of care available (Vissandjée et al., 2014). Thus, when clinical interactions yield limited sensitivity, women and girls with FGC tend to not seek future help in a timely manner, resulting in poor care long term and aggravated health conditions, many of which are otherwise preventable (Kalengayi et al., 2016; Vissandjée et al., 2014). The role of migration and gender-related considerations in and around the practice of FGC cannot be underscored enough. In Canada, there is a rising influx of women and their daughters seeking asylum for having undergone or fearing FGC. The grounds which are presented include fear of persecution related to the risk of FGC (Middelburg & Balta, 2016). However, many of these cases are being dismissed, mostly because of the women’s perceived lack of credibility. Selected asylum cases are rejected because regulations and laws criminalizing FGC in home countries are deemed sufficient to ensure women’s and girls’ protection, thereby underestimating the risk faced upon return to the home country. The history of FGC as grounds for claiming asylum reveals a certain level of misunderstanding, limited awareness regarding gender-related dimensions, thereby perpetuating a risk of denying women and girls protection against human rights violations (Middelburg & Balta, 2016).

CONCLUDING REMARKS: UNDERSTANDING MIGRANT WOMEN’S HEALTH Immigration constitutes a transition that has considerable impacts on the health and well-being of women. We have argued that the health of migrant women is best understood using a sociopolitical context framework that takes complex and intersecting SDOH into consideration. Intersectionality conceptualizes intertwined social categories as interacting with and co-constituting one another to create unique social locations that vary according to time and place (Hanskivsky, 2014; Hinze et

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al., 2012; Ferrer, 2019). Such a paradigm captures the complexity of lived experiences and concomitant, interacting factors of social inequity, which in turn are key to understanding health inequities (Hankivsky & Christoffersen, 2008; Ferrer, 2019). With an intersectional framework, one recognizes the multiple influences and facets of women’s health, while carefully accounting for the migration experience as a true SDOH. Additional work is needed to demonstrate the following: (a) evidence for considering the immigration experience itself as a health determinant and (b) systematic sex and gender analysis in immigration and health research (Gomez, 2019; Lacasse et al., 2019). While being an immigrant is not in and of itself a health risk, it requires an intersectional lens from prevention to higher level care. On a global level, the 2030 SDGs clearly articulate how gender and equity should be reflected in policies, programs, and practices. This chapter has contributed to highlight the necessity of strengthening health policies that integrate such sensitivity to fully address the lived experiences at the interface of sex, gender, and migration experiences of immigrant women in Canada.

DISCUSSION QUESTIONS 1 The COVID-19 pandemic has dramatically worsened the wellbeing of migrant women, particularly refugees. Using an intersectional perspective, what can be done at local, national, and global levels to improve the situation? 2 What are the risks associated with using the terminology ‘FGM’ in a public health context? Please elaborate on how an intersectional framework may help in this regard. 3 What challenges can you identify with respect to international justice and the rights of women who have been exposed to gender-based violence and claiming asylum in Canada? 4 How can gender and migration be accounted for as intersecting social determinants of health (SDOH) in an effort to redress inequities?

ACKNOWLEDGMENTS

The authors wish to acknowledge the contribution of Isabel Fernandez, Master's student at the Université de Montréal, for updating and revising the references. REFERENCES Adu, P., Ukah, U., & Palmer, S. (2017). Association between recency of immigration and mammography uptake: Results from a Canadian national survey. Journal of Immigrant and Minority Health, 19(1), 228–235. https://doi.org/10.1007/s10903-015-0298-6 Aroian, K., Uddin, N., & Blbas, H. (2016). Longitudinal study of stress, social support, and depression in married Arab immigrant women. Health Care for Women International, 38(2), 100–117. https://doi.org /10.1080/07399332.2016.1253698

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Understanding Migrant Women’s Health Lapierre, J., Lessard, G., Hamelin-Brabant, L., Lévesque, S., Vissandjée, B., & Moubarak, N. (2020). Violence conjugale et pratique infirmière : reconnaître les experiences des femmes, soutenir les decisions, conseiller, aiguiller et faciliter l’accès vers les ressources. Perspective Infirmière, 17(3), 24-40. https://www .oiiq.org/w/perspective-infirmiere/revue-PI-vol17-no3.pdf#page=24 LégisQuébec. (1991). Chapter S-4.2 Act Respecting Health Services and Social Services. http://legisquebec .gouv.qc.ca/en/ShowDoc/cs/s-4.2 McAuliffe, M., Kitimbo, A., Goossens, A. M., & Ullah, A., A. (2018). Understanding migration journeys from migrants’ perspectives. In World Migration Report 2018 (chapter 7). International Organization of Migration. https://publications.iom.int/system/files/pdf/wmr_2018_en_chapter7.pdf Middelburg, A., & Balta, A. (2016). Female genital mutilation/cutting as around for asylum in Europe. International Journal of Refugee Law, 28(3), 416–452. https://doi.org/10.1093/ijrl/eew056 National Assembly of Quebec (2019). Projet de loi n°9. http://m.assnat.qc.ca/en/travaux-parlementaires /projets-loi/projet-loi-9-42-1.html Okeke-Ihejirika, P., Yohani, S., Muster, J., Ndem, A., Chambers, T., & Pow, V. (2018). A scoping review on intimate partner violence in Canada’s immigrant communities. Trauma, Violence & Abuse, 21(4), 788–810. https://doi.org/10.1177/1524838018789156 Omariba, W. R., Ng, E., & Vissandjée, B. (2014). Differences between immigrants at various durations of residence and host population in all-cause mortality, Canada 1991–2006. Population Studies: A Journal of Demography, 68(3), 339–357. https://doi.org/10.1080/00324728.2014.915050 Policy Research Initiative. (2009). Understanding Canada’s “3M” (multicultural, multi-linguistic and multireligious) reality in the 21st century. Ponic, P., Greaves, L., Pederson, A., & Young, L. (2014). Power and empowerment in health promotion for women. In L. Greaves, A. Pederson, & N. Poole (Eds.), Making it better: Gender-transformative health promotion (pp. 42–57). Canadian Scholars’ Press. Pottie, K., Greenway, C., Feightner, J., Welch, V., Swinkels, H., Rashid, M., Narasiah, L., Kirmayer, L. J., Ueffing, E., MacDonald, N. E., Hassan, G., McNally, M., Khan, K., Buhrmann, R., Dunn, S., Dominic, A., McCarthy, A. E., Gagnon, A. J., Rousseau, C., & Tugwell, P. (2011). Evidence-based clinical guidelines for immigrants and refugees. CMAJ, 183(12), E824–E925. https://doi.org/10.1503/ cmaj.090313 Rivera, B., Casal, B., & Currais, L. (2015). Length of stay and mental health of the immigrant population in Spain: Evidence of the healthy immigrant effect. Applied Economics, 47(19), 1–11. https://doi.org /10.1080/00036846.2014.1002895 Ruiz-Casares, M., Rousseau, C., Laurin-Lamothe, A., Rummens, J. A., Zelkowitz, P., Crépeau, F., & Steinmetz, N. (2013). Access to health care for undocumented migrant children and pregnant women: The paradox between values and attitudes of health care professionals. Maternal and Child Health Journal, 17(2), 292–298. https://doi.org/10.1007/s10995-012-0973-3 Singer, M., Bulled, N., Ostrach, B., & Mendenhall, E. (2017). Syndemics and the biosocial conception of health. The Lancet, 389(10072), 941–950. https://doi.org/10.1016/S0140-6736(17)30003-X United Nations Population Fund. (2005). Human rights principles. http://www.unfpa.org/resources/human -rights-principles Vang, Z., Sigouin, J., Flenon, A., & Gagnon, A. (2015). The healthy immigrant effect in Canada: A systematic review. Population Change and Lifecourse Discussion Papers Series, 3(1), 1–41. https://ir.lib.uwo .ca/cgi/viewcontent.cgi?article=1012&context=pclc Vissandjée, B., Desmeules, M., Cao, Z., Abdool, S., & Kazanjian, A. (2004). Integrating ethnicity and migration as determinants of Canadian women’s ealth. BMC Women’s Health, 4(Suppl. 1), S32-S32. https://doi.org/10.1186/1472-6874-4-S1-S32 Vissandjée, B., Thurston, W., Apale, A., & Nahar, K. (2007). Women’s health at the intersection of gender and the experience of international migration. In M. Morrow, O. Hankivisky, & C. Varcoe (Eds.),

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CHAPTER TWENTY

An Intersectional Analysis of the Ontario Dementia Strategy Ngozi Iroanyah

In 2016, the Canadian national census revealed two emerging and significant shifts in the country’s demographic landscape. A rapidly aging population, alongside a simultaneous increase in immigration from source continents like Asia and Africa that are more racially and culturally diverse than traditional Caucasian source countries in Europe, is reshaping the structure of the Canadian population (Statistics Canada, 2017a). Together, these two trends intersect, along with other ­positions of prevailing social hierarches, following lines of power organized by race, culture, gender, class, sexuality, physical ability, and immigration status, and coming together to form a unique lived ­experience for older immigrant populations whose aging process can differ from that of their Canadian-born counterparts. One configuration of these intersections is the health and aging of racialized immigrants in Canada. According to Statistics Canada (2017b), older adults compose approximately 16.8 per cent of the national population. This carries significant health and social implications; as populations age, the risk of age-related mental health issues, cognitive disorders, and complications also rises, resulting in an increased need for mental health care and social service supports. Combined with the larger waves of immigration, the result is an aging, foreign born, often racialized, cohort whose unique cultural, social, and political needs necessitate health policies that not only acknowledge these intersections but also incorporate them into policy development. This chapter provides an analysis of the consultation questions in the 2016 Ontario dementia care strategy’s discussion paper (Ontario Ministry of Health and Long-Term Care, 2016) using an intersectionality-based policy analysis framework, outlined by Hankivsky et al. (2014), to identify equity dimensions and determine (if any) the differential impacts on racialized, visible minority, older, immigrant adults and consider recommendations where gaps exist. The discussion paper was based on a series of public consultations to identify the dementia-related issues of most concern. These consultations informed the development of the Ontario dementia strategy in its strategic funding and operationalization. As the most populous and racially diverse province in Canada, and the most popular destination for newcomers, Ontario offers advantages in the development and provision of a dementia care strategy that can be both equitable and prosperous. This analysis will

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focus on the Ontario provincial strategy, which at the time of this writing, had only the consultation questions available to the public. This chapter will discuss the current demographic climate that contributes to a need for an intersectional lens in health policy as it pertains to immigrant seniors. Following an introduction of intersectionality in health policy, this chapter will employ an ­intersectional-based policy analysis to investigate the Ontario dementia strategy to determine gaps in the policy that disproportionally affects racialized immigrant seniors and offer recommendations.

BACKGROUND In 2016, the Canadian census revealed that for the first time that the number of Canadians ages 65 and older outnumbered those 14 years and younger (5.9 million people to 5.8 million people) (­Statistics Canada, 2017b). The difference in these numbers is not only alarming but also signifies the rapid increases and decreases in portions of populations that have occurred since the 2011 census. In the intervening five years, there was an approximate 20 per cent yearly increase in the number of people who were 65 years and older, compared to the average yearly growth rate of 5.0 per cent for the general population and the yearly 4.1 per cent increase for the 0- to 14-year-old population (Statistics Canada, 2017b). Ontario, the country’s most populous province, experienced similar trends: the number of 0- to 14-year olds had increased more slowly than those ages 65 and older, 2.2 million compared to 2.4 million between 2011 and 2016 (Statistics Canada, 2017c). Cultural demographic changes in immigration patterns had also occurred after the 2011 census. In the 2016 census, one in every five Canadians self-identified as foreign born. This amounted to 7,540,830 people, or 21.9 per cent of the population, who claimed another country as their place of birth, compared to 19.8 per cent of the population in the 2006 census and 20.6 per cent in the 2011 ­National Household Survey (Statistics Canada, 2017a). The numbers of newcomers seen in the 2016 census was the second-largest immigration trend since Confederation following the immigration trends of 1921. Statistics Canada projects that these immigration rates could increase to between 24.5 and 30 per cent of the Canadian population being foreign born by 2036 (Statistics Canada, 2017a). Of the approximately 22 per cent of people who identified as foreign born, more than half were from Asian countries, followed by those born in African countries, which, also for the first time, had become the second-largest continent source of new immigrants after Europe. Of the Canadian population, 22.3 per cent identified as being a member of a visible minority group (Statistics Canada, 2016). As a long-established popular destination for immigrants, Ontario saw a 6.7 per cent increase in the foreign-born population between 2011 and 2016, attracting 39 per cent of the 1.2 million new immigrants to Canada or 472,172 people, which made up approximately 29 per cent of the province’s population (Statistics Canada, 2016). The age of those who immigrate also has significant implications for Ontario’s population in later years. Between 2011 and 2016 there were over 31,490 immigrants 65 years and older who had made Ontario their home (Statistics Canada, 2016). The Ontario Ministry of Finance projects that Ontario will continue to be the most popular destination province leading into 2041, with 41 per cent of the country’s immigrant population. The projection of age demographics also follows current trends, with those ages 65+ making up 24.8 per cent of the population by 2041 (Ontario

An Intersectional Analysis of the Ontario Dementia Strategy

Ministry of Finance, 2016). With the average age of immigration to Canada being 30 years old, the cohort of Canadian citizens born between 1997 and 2001 will see an increase in their senior population by the mid-2060s. Immigration rates have also influenced the aging demographic of the 1967–1971 cohort, a period of declining birth rates, resulting in a more diversified age group by up to 36 per cent when this group turns 60 by the mid-2030s (Carriere et al., 2016). These concurrent phenomena will result in an increasing cohort of aging immigrants to Ontario and adults who have immigrated in earlier years that will present unique opportunities and challenges for policymakers to devise policy that not only operates in culturally appropriate frameworks but is developed with equity as a central feature. . Within immigrant populations, their health status as the healthy immigrant effect (Kennedy et al., 2015; Kobayashi & Prus, 2011; Newbold, 2006; Ng, 2011), has been widely studied. ­However, there is a paucity of research in mental health for immigrant seniors and even less research on mental health in racialized immigrant senior populations, including the experience of dementia. In this emerging field of study, scholars have offered insights into the experiences of this group in accessing dementia services and the gaps that have resulted from a lack of ongoing research on the impact of their intersectional status and its relationship with health systems (Hulko, 2009, 2011; Kalich et al., 2016; Lawrence et al., 2010; Persuad et al., 2013; Torres, 2015; Uppal & Bonas, 2014). Statistics on dementia in Ontario and Canada offer a view into current rates of the disease and its projection. In 2016, there were an estimated 175,000 people living with dementia in Ontario and approximately 564,000 people across Canada. The numbers for the Canadian population are expected to increase to 937,000 by 2031. In addition to the toll on the health and well-being of those who experience dementia, it also carries a significant economic toll. Dementia is poised to cost over $10.4 billion to care for those living with it (Chambers et al., 2016). As immigration trends continue, the result will be a growing, aging, racially and culturally diverse population, ­requiring governments at all levels to address and accommodate the dementia care needs of this emerging demographic through policy and programs. For current and potential research on ­dementia in immigrant senior populations to appropriately inform health policy, an intersectional perspective is required to account for the multiple simultaneous locations occupied by these groups and how these locations in tandem engage with dominant epistemological power structures that govern health and health care. This chapter will use an intersectionality-based health policy analysis framework (Hankivsky et al., 2014) to challenge the epistemological foundations that define and dominate health policies that are rooted in Western ontological notions of health and dementia. This framework promises to elucidate how the power dynamics in political and social structures influence what is constructed and reconstructed in health discourse and their resulting impacts on the relationship between the individuals, the health care system, and the community.

Intersectionality and Health Policy While health care policy has moved beyond a biomedical model as its dominant underpinnings to include behavioural change and determinants of health that have influenced its frameworks, it falls short of considering the multiplicity of the social locations of those to whom these policies are

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directed. The complexity of these identities, their relationship to power structures that have shaped these identities, and their positionality to social and political institutions that render them subordinate and peripheral are minimally politicized and thus remains largely unexamined, unchallenged, and reproduced. In response to this, within health policy and health policy research, the paradigm of intersectionality has been adopted beyond a Black feminist approach to become more visible in public policy and health policy (Bauer, 2014; Carbado et al., 2013; Dhamoon & Hankivsky, 2011; Green et al., 2017; Hankivsky, 2014; Hankivsky & Cormier, 2011). The paradigm helps to identify inequities and inequalities experienced by non-mainstream groups in their relationships with health systems. An intersectional approach to policy helps to ensure that policy does not negate or ignore the inequities experienced through simultaneous social location, either through a manifest or latent intent. In this way, intersectionality is a way of understanding and analyzing the complexity in the world of people in human experiences. The

events and conditions of social and political life and the self can seldom be understood as shaped by one factor. They are generally shaped by many factors in diverse and mutually influencing ways. When it comes to social inequality, people live 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)

INTERSECTIONALITY-BASED POLICY ANALYSIS Intersectionality as a tool for policy analysis can offer significant benefits in informing all stages of the policy cycle and can shape research, and data collection and analysis with an ultimately transformative and wide-reaching impact. Intersectionality’s disruptive effect broadens health policy, requiring it to consider the constitution of the beneficiaries beyond binary or multiple additive approaches to the inclusion of their simultaneous multiple social locations, the complexities of identities, and their relationship to power structures that shape them and their positionality vis-à-vis social and political institutions (Hancock, 2007). The impacts of these policies on the health status of marginalized groups have been well documented (Kalich et  al., 2016; Koehn et al., 2011; Lawrence et al., 2010; Mullings & Gien, 2013; Van Mens-Verhulst & Radtke, 2006; Viruell-Fuentes et al., 2012; Williams et al., 2016). These asymmetrical power dynamics have resulted in health inequities with implications can begin at conception and continue throughout all life stages (Kobayahi & Prus, 2011). The consequences of these dynamics form perceptions and knowledge of health and well-­being, including what constitutes disease, patient identity, acceptable treatment-seeking ­behaviour, access to health and health care services, and forms of treatment, diagnosis, and prognosis. All of these are congruent with dominant Western ontologies of health that reinforce existing social narratives and cleave social groups into subordinate positions, legitimizing hierarchies that sanction the complicity in health policymaking that results in adverse outcomes for marginalized groups that may have alternative views of these perceptions and forms of knowledge of health.

An Intersectional Analysis of the Ontario Dementia Strategy

In response, Hankivsky et al. (2014) developed an intersectionality-based policy analysis framework to confront these tensions and promote the inclusion of alternative social narratives that will lead to more equitable health outcomes. The intersectionality-based policy analysis (IBPA) framework was devised to close the gaps in policy where intersectionality has been a challenge to operationalize. Tasked with moving policymakers beyond singularly defined equity approaches, IBPA operates to consider the complex relationship between the simultaneousness of social locations and their power dimensions, drawing out the structural inconsistencies and disadvantages within policy itself to advance and reconceptualize determinants of equity in health and well-being (Hankivsky et al., 2014). The framework has two core components that work in tandem to inform the critical analysis of policy. The first component is a set of guiding principles that anchor the second component: 12 determining questions divided into descriptive and transformative categories. The nature of the questions, when combined, ensures that policy problems are understood in a more concise way that emphasizes equitable recommendations and responses (Hankivsky et al., 2014). When analysing policy, the IBPA framework uses the elements of structural innovation and transformative effects in its interrogation of policy. Structural innovation comprises three elements, designed to problematize the covert and overt assumptions underwriting policy, contextualize the historical and contemporary conceptions of social issues on which these policies are based, and the ­self-reflexive mechanism through which to understand these complex relationships that shape lived realities. The transformative effects of IBPA can introduce new ways to approach policy that will result in equitable outcomes (Hankivsky et al., 2014). Through this, IBPA not only provokes policymakers to do policy differently but also stands as an agent for social justice.

METHODOLOGY In analysing the Ontario dementia strategy, this chapter will employ the IBPA framework to problematize the discussion questions upon which the strategy is based. This involves examining the ways in which people living with dementia and their families have been constructed through policy discussions. For more information on the consultation questions in the Ontario dementia strategy, see Ontario Ministry of Health and Long-Term Care (2016). When using the IBPA framework, 12 questions help guide the analysis. The questions are divided into two categories, descriptive and transformative, and together they push the boundaries of the ways policy is understood and analysed and offer areas for transformation. The five descriptive questions offer an opportunity to critically contextualize policy problems, including the processes of how policy problems are determined. In this chapter, I apply just one of the d ­ escriptive questions, “How are groups differentially affected by this representation of the problem?” (Hankivsky et al., 2014, p. 4), to get at how power dimensions construct the relationships between health care and their consumers. The seven transformative questions encourage the exploration of new policies and how these alternatives can be used to constitute policy that is equitable in meaningful ways and in the ways in which equitable outcomes are evaluated. In this analysis, I use just one of the transformative questions, “What inequalities actually exist in relation to the problem?” (Hankivsky et al., 2014, p. 4), to assess how these relationships impact the health status and general experiences

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of patients and their family members. These two questions help to pull the strategy into clearer view to reveal its hidden assumptions about who people with dementia are and what their experiences with dementia care services are like. I illustrate how these assumptions create an inequitable distribution of care and can result in lower health status. Applying the IBPA to the Ontario dementia strategy consultation questions offers opportunities to investigate how certain kinds of assumptions about aging and dementia shape and influence public consultations in ways that unwittingly obscure the experiences of racialized immigrant seniors and their families and render these experiences invisible in resulting policy and strategies. At the time of this review, the only public-facing document related to the strategy was the consultation questions. At the time of this writing, neither the methodology nor a detailed outline of the strategy has been made available, including any statistics or results on who responded. This analysis will highlight the ways in which the multifaceted identities and needs of ethnic minority immigrant seniors will be addressed and enhanced. The Ontario dementia care strategy was envisioned as part of Patients First: A Roadmap to Strengthen Home and Community Care, a 2015 initiative of the Ontario Ministry of Health that aimed to redefine health care from a patient-centred perspective and provide a framework for improving health care experiences and patient outcomes. The Ontario dementia care strategy was designed as a three-year strategy to better support the aging populations of Ontario who were living with or affected by dementia. As part of the strategy, $100 million was allocated to improve the amount and quality of at-home and community services and to better support those living with dementia, their family members, and their care partners. The dementia care strategy was developed through a series of online and in-person consultations throughout Ontario with people living with dementia and their care partners, family members, friends, and health care professionals, and others who work with or are impacted by people with dementia. The consultations were guided by six key areas identified through the ministry’s research and work on dementia: (1) supports for people living with dementia, (2) the accessing of dementia services, (3) coordinated care and support for care partners, (4) a well-trained dementia workforce, (5) awareness and stigma, and (6) brain health. Each area was introduced with a short description of its relevance to dementia care. The set of consultation questions were then provided whose answers would inform the final strategy. The themes reflected current understanding and discourse on the state of dementia and dementia care in Ontario politically, economically, and individually. These questions were an attempt to target the needs and wants of those affected by dementia in an equitable way

RESULTS When applying the two questions from the IBPA framework: (a) How are groups differently affected by the representation of the problem? (b) What inequities actually exist in relation to the problem? – the findings revealed three broad themes. These themes encapsulate the tensions inherent in the strategy that operate as exclusionary practices against racialized immigrant seniors: (a) dominant Western frameworks about health and dementia that marginalize alternative understandings and experiences, (b) engagement with the health care system, and (c) social determinants of health for racialized immigrant seniors.

An Intersectional Analysis of the Ontario Dementia Strategy

Theme 1: Dominant Western Medical Ideologies and Frameworks In the analysis of the consultation questions, the construction of dementia as a Western medical disease highly influences the formation of all the consultation questions and the subsequent relationship with the participants in answering them. This dominant framework leads with a set of assumptions about dementia that is rooted in a Western ideology about health and disease and presupposes the participants possess and subscribe to this. This framework and ideology are inadequate for understanding the diverse cultural and social conceptions of mental health and wellness that racialized immigrant seniors might have and can negatively impact their health seeking behaviour, health status, and experience. An example is seen in the consultation questions from Theme 1. Question 1 from the IBPA framework illuminates a set of monolithic assumptions about a universal understanding and experience of dementia and its related care and support that may not be as generalizable to all those affected by it. To begin, the questions start with the assumption of a common understanding and conception of what dementia is and how it presents. Dementia is constructed as a medical condition in the Western framework that requires medical interventions and services, including the need for a nursing home. Memory loss and cognitive degeneration hold different meanings and conceptions in different cultures. These differences reflect how dementia care is constructed in various social, political, cultural, and health contexts. These varying perspectives may impact what someone might consider to be an essential service or support for someone living with dementia and may impact what high-quality programs should consist of for some patients and their family members. These varying considerations can also be seen most in the types of services and supports provided by agencies and the gaps that may result. These considerations are also necessary when determining the best types of support for the management of responsive behaviours. Differing conceptions of what dementia is can lead to different ideas of what a behavioural issue is, which can then influence how it is addressed. Westernoriented frameworks of aging and dementia-related behaviour may conflict with other cultural practices and perceptions of aging and related behaviours. They may inadvertently exclude people with alternative behavioural views and create barriers to engagement to those experiencing ­dementia, including getting an early diagnosis, accessing supporting, and having treatment options. When applying the two questions from the IBPA framework – (a) How are groups differently affected by the representation of the problem? and (b) What inequities actually exist in relation to the problem? – these assumptions are challenged.

Theme 2: Engagement with the Health Care System Other implicit assumptions made in the consultation questions on behalf of the patients and their care partners answering these questions are of a universal knowledge and experience of navigating the Ontario health system for dementia care services. An example is illustrated in the consultation questions from Area 2 of the strategy, “Accessing Dementia Services.” There is an assumption that that participants have already or are going to access dementia care services. Literature has shown, however, that racialized immigrant seniors face additional language and cultural barriers when accessing the health care system, which impacts their accessing dementia care services as well. These

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initial assumptions can unintentionally negate the lived experience of this population and create gaps in service delivery. Other questions asking participants for input on how to improve access to dementia care through “best practices and initiatives” place the onus on the participants to have a basis of understanding and level of engagement with the health care system that has not yet been determined. It is misleading to assume that every participant, or most of them, would know what a “best practice and initiative” is in a health service context. The use of terminology that assumes an understanding of health research, quality, and process shows a bias towards individuals who have already been engaged in the system and have a prior understanding of its language and processes. The language caters to this group, invariably excluding those and their family members who don’t have those experiences or access to such information. Questions 2 through 4 in Area 3: “Coordinated Care” also illustrate this bias. The questions posed were about how to enhance coordinated care for patients and providers alike. These questions were positioned in Western frameworks and used medical lexicon to describe coordinated care that for some is not always understood and may involve different models of interaction, or not, with providers. The language used denotes a pre-existing relationship with the health care system, that discusses concepts like “seamless, well-coordinated” care, though these terms are not explained and may be confusing and exclusionary. These questions place a burden of responsibility on those living with dementia and their family supports to address or fix elements in the system. For racialized immigrant seniors with limited exposure to dementia care pathways, the intricacies of the most effective ways to follow these pathways may not be known. These questions, rather than being inclusive, stand to exclude these seniors’ voice in decision making and programming, causing greater inequities and lower health status and experiences.

Theme 3: Social Determinants of Dementia Care for Racialized Immigrant Seniors Current allied dementia care services are meant to support people living with dementia and their caregivers. Questions around how to better support care partners reinforce existing hegemonic paradigms of Western medicine and health care that may not resonate with different cultural perspectives. The IBPA framework helps to question which groups are included and which are not. In the consultation questions from Area 4: “Support for Care Partners,” when asking what services or supports are effective in assisting care partners to dementia patients, two assumptions are made. First, the assumption is made that home care services and adult day programs are accessible to everyone. Both services are expensive and involve transportation costs that may be out of reach for people living with dementia and their families who may have limited budgets. Day programs may not cater to the cultural needs of racialized immigrant seniors in structured, program-oriented ways. People with Alzheimer’s who grew up in different cultures or speak more than one language may regress to those earlier way of speaking and exhibit behavioural patterns that may be incompatible with Western approaches to conducting dementia care. Second, services and supports that are offered from a Western perspective may not consider how health and health care are framed in different cultural contexts. Having home services may not be an option for those who regard their home as a place away from outside interventions and systems or who feel that care for elder members is to be done by family members or close

An Intersectional Analysis of the Ontario Dementia Strategy

friends only and may not want to open their home to strangers. This reality may impede policy and program developers from including these participants in a meaningful way.

CONCLUSION Dementia is poised to soon become one of the most significant public health concerns in Canada. Aging populations combined with steady waves of immigration will result in an aging immigrant population that will require policies that are inclusive of their diverse and unique social positioning to best meet their health-related needs. Racialized immigrant seniors are a cohort of Ontario society whose social construction are at the intersection of age, ethnic groups, race, immigration and/or citizenship status, and culture. Together, these categories form a collective of “othered” person(s) living with dementia outside the dominant Western framings of who someone living with dementia is: white, male, Canadian born, cisgender, able bodied, heterosexual, English speaking, highly educated, with a high socioeconomic status, who subscribes to the Western philosophy of health and medicine, and is familiar with the health care system and its components. Immigrant seniors’ social position informs their cultural, linguistic, and social relationships and interactions with Western medicine and health frameworks, which can result in misaligned perspectives of dementia and acceptance of its definitions, causes, symptoms, and treatments. Western health systems are founded on biomedical models of health and wellness, though they are increasingly being amended to include other social determinant frameworks that also influence health status. Dementia as a medical health issue has been framed in a Western culture where its causes, symptoms, and treatment pathways are clearly defined. In this, however, there has been little room for the reality of the lived experiences of racialized immigrant seniors who may have different conceptions of mental health and its social determinants. Intersectionality as a framework for health policy has been used as a conceptual model alongside the social determinants of health model; both emphasize the impact that social location has on health status. Intersectionality in health policy goes further to emphasize how the simultaneous occupation of co-existing multiple locations i­nteracts with power structures that define policy. This can reveal the adverse impacts on the health status of certain groups. Health policies are constructed with beneficiaries at the centre of their development. Intersectionality considers that the social constructions of some beneficiaries are not made from a single social position, or even from multiple ones in an additive sequence; rather they are an integration of all the constituting social identities that then interacts with the power systems inherent in society that are reflected in policies. It is at this level of interaction that seemingly politically neutral and inclusive policies have inherent inequities built into them. Racialized immigrant seniors have a constellation of race, age, and culture as part of their identity. Gender, class, and ableism are other social locations that impact health status alongside the aforementioned locations. The Ontario dementia strategy, while earnest in intention to capture the average experience of all dementia patients and their caregivers in Ontario, was designed from public consultation questions based on assumptions of a universal understanding of dementia, dementia care programs, and treatment options; the Ontario health system; Ontario health workers; and best practices in dementia care. The IPBA framework challenges these assumptions, which have moved the lived experience

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Figure 20.1.  Ngozi Iroanyah with her dad, Felix Iroanyah, sharing a tender moment. His diagnosis led her to pursue her PhD in race and dementia in Canada.

and reality of some racialized immigrant seniors and their care partners to the periphery of discourse about their own dementia-related needs and ways to best culturally support them. From the strategy questions, there is little room evident for cultural accommodations in the making of new policy. The resulting policy will largely represent and reaffirm existing social dynamics and relationships that privilege Western thinking about dementia and its care and the universal patient. This implies that any cultural accommodations for racialized immigrant seniors may need to be carried out at the local level or on an individual basis. This may result in systemic gaps and inconsistencies in care that are not sustainable or wide reaching and that may have more negative aspects than positive gains for racialized immigrant seniors with dementia and their families. These consultations were a reflection of the taken-for-granted cultural dominance of Western medical thought that has inherent within its conception barriers for effective programming. Intersectionality as a framework would help to illuminate these blind spots and include the voices and lived experiences of a growing and aging population. Recommendations for future policies or iterations of this one must incorporate an intersectional lens and move beyond the notion of inclusivity as the inclusion of underrepresented or alternative voices and experiences at the consultation phase. It must start with the design of policy, at its inception, to problematize the dominant conceptions of health and wellness and the universal patient that are currently invoked as standards within the Ontario dementia strategy. We need to move to creating policies with mechanisms that allow for the accommodation of alternative conceptions of mental health and wellness and that reflect these lived experiences other than reproducing dominant, exclusionary one.

An Intersectional Analysis of the Ontario Dementia Strategy

DISCUSSION QUESTIONS 1 What are the experiences of racialized immigrant seniors with the health care system concerning dementia care? 2 How can health care providers be better supported in attending to the dementia-­ related needs of their immigrant senior patients and their families? 3 How can city-led or province-led age-friendly approaches consider the diverse needs of the immigrant senior population with dementia? 4 In what ways can dementia care policies be more responsive to unforeseen challenges, like COVID-19, where service delivery is affected? 5 How can culturally specific community organizations become better integrated with the health care system to support models of dementia care at clinical and social ­support levels?

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An Intersectional Analysis of the Ontario Dementia Strategy Statistics Canada. (2017c). Ontario [Province] and Canada [Country] (table) (Catalogue No. 98-316-X2016001). https://www12.statcan.gc.ca/census-recensement/2016/dp-pd/prof/details/Page.cfm?Lang=E&Geo1=PR &Code1=35&Geo2=PR&Code2=35&Searc hText=Ontario&SearchType=Begins&SearchPR=01&B1 =All&GeoLevel=PR&GeoCode =35&type=0 Torres, S. (2015). Expanding the gerontological imagination on ethnicity: conceptual and theoretical perspectives. Ageing & Society, 35(5), 935–960. https://doi.org/10.1017/S0144686X14001330 Uppal, G., & Bonas, S. (2014). Constructions of dementia in the South Asian community: A systematic literature review. Mental Health, Religion & Culture, 17(2), 143–160. https://doi.org/10.1080/13674676 .2013.764515 Viruell-Fuentes, E. A., Miranda, P. Y., & Abdulrahim, S. (2012). More than culture: structural racism, intersectionality theory, and immigrant health. Social Science & Medicine, 75(12), 2099–2106. https://doi .org/10.1016/j.socscimed.2011.12.037 Williams, A., Sethi, B., Duggleby, W., Ploeg, J., Markle-Reid, M., Peacock, S., & Ghosh, S. (2016). A Canadian qualitative study exploring the diversity of the experience of family caregivers of older adults with multiple chronic conditions using a social location perspective. International Journal for Equity in Health, 15(1), 40. https://doi.org/10.1186/s12939-016-0328-6 Van Mens-Verhulst, J., & Radtke, H. L. (2006). Intersectionality and health care: support for the diversity turn in research and practice. http://www.vanmens.info/verhulst/en/wp-content/Intersectionality%20and%20 Health%20Care-%20january%202006.pdf.

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Prioritizing Non-communicable Diseases at the Intersections: Global Action in the Canadian Context Olena Hankivsky, Claire Sommerville, and Mary Manandhar

NCDs (non-communicable diseases), including cardiovascular diseases, cancers, chronic respiratory diseases, and diabetes, are the major cause of health problems and death globally. Despite this, within Canada and internationally, NCDs have not received adequate political or financial attention. For example, NCDs were absent from the Millennium Development Goals (Mamudu et al., 2011), and before 2005 (and the introduction of The Integrated Strategy on Healthy Living and Chronic Disease, Public Health Agency of Canada), minimal attention was paid to NCDs in the Canadian context. Importantly, the situation is slowly shifting. The World Health Organization (WHO) developed the Global Action Plan for the Prevention and Control of Noncommunicable Diseases 2013–2020 (WHO, 2013). NCDs were included in the 2030 Sustainable Development Agenda (of which Canada is a signatory) with its 17 Sustainable Development Goals (SDGs) (United Nations, 2016), including a commitment to reduce premature mortality from NCDs by one third by the year 2030. Also important has been a significant mobilization and alignment of international civil society movements, such as the NCD Alliance – with other geopolitical stakeholders and regional groupings – that have successfully raised the significance of NCDs in the global health agenda. Despite such developments, improved national and global responses that require political will and funding are still needed (Horton & Sargent, 2018; Nugent et al., 2018; WHO, 2018b). This is especially true with the focus on COVID-19, when non-communicable diseases have been increasingly neglected, which is adding a burden to the health care system. Recently, it was noted that “as the world continues to navigate the pandemic, governments must prioritize smart and strategic investments to reduce the growing burden of NCDs” (Vital Strategies, 2021). For such responses to be effective, they also need to be able to capture the complex nature of NCDs and their relation to global health inequities. For example, citing inequality as one of the most important drivers of NCDs, Wepner and Giesecke (2018) have argued that “the traditional tools of policy making can no longer be used to govern the increasingly diverse aspects attached to NCDs” (p. 9).

Prioritizing Non-communicable Diseases at the Intersections

As one response to this situation, attention to the gendered effects of NCDs has increased. As more gender-disaggregated data become available, it is clear that NCDs are shaped by more than gender alone. Different groups of women and men with widely varying social, economic, and ­educational status face different and inequitable NCD-related burdens. While highlighting gender as a determinant of health and defining gender as a relational concept, the strategies would further benefit from situating gender at its intersection with the many other social determinants of health and wider societal structures and processes that drive health inequities. An impressive body of ­research now exists, for example, showing the importance of an intersectionality approach for more precisely capturing how a variety of social locations, together with the structures and processes of power that shape them, affect risk factors and outcomes for health inequities. We thus argue in this chapter that there is a pressing need to develop policy approaches, both within Canada and internationally, that contextualize gender within an intersectionality framework to best understand – which women, and which men, in which contexts and influenced by which determinants – are most affected by NCDs. In so doing, we also provide examples and suggestions for how intersectionality can be applied to further intersectionality-informed thinking in the field of NCDs.

BACKGROUND NCDs kill 41 million people annually and are responsible for 71 per cent of all deaths globally (WHO, 2021). ­Cardiovascular diseases, cancers, respiratory diseases, and diabetes alone account for over 80 per cent of all premature NCD deaths. Further, 77 per cent of these premature deaths occur in low- and middle-income countries (WHO, 2021). For instance, this can be observed by looking at the variations within regions – in the eastern part of the European region, 37 per cent of NCD-related deaths occur before the age of 60, compared to 13 per cent in western Europe (WHO EURO, 2018). Moreover, across Europe, WHO observes up to a 17-year difference between the lowest (64.7 years in Turkmenistan) and highest (81.2 years in Switzerland) ranking countries in male mortality with further large differences within countries and between different groups of men (WHO EURO, 2018). In Canada, NCDs are the cause of 65 per cent of all deaths each year (Government of Canada, 2017). NCDs are influenced both directly and indirectly by gender – a social construction shaped by forces of power and privilege. Specifically, gender influences and is influenced by behaviours, relations, opportunities, and life chances for all people, as well as their health outcomes (Manandhar et al., 2018). Empirical evidence of inequities in the distribution of disability-adjusted life years, burden, and mortality rates between men and women in all regions highlight a broad generalization: NCDs tend to exert a higher burden on men than on women (Wang et al., 2017; WHO EURO, 2020a). At the same time, 6.2 million women ages 30 to 70 years die each year because of NCDs, making this by far the largest cause of premature mortality in women globally, in Europe, in low- and middleincome countries, and in Canada (WHO, 2018b). Importantly, the available evidence base shows that women and men have different levels of exposure and vulnerability to NCD risk factors, as well as different manifestations of NCD symptoms (Pan-American Health Organization [PAHO], 2012; WHO EURO, 2020a).

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Drivers and risk factors (see figure 21.1) include biological factors, genetics, social and economic conditions, commercial determinants (e.g., food and drink, alcohol, and tobacco) and concomitant social inequities that shape behaviours (e.g., tobacco use, harmful use of alcohol) and constrain ­individual choices and opportunities (e.g., access to health literacy, healthy diets and physical activity) (Kickbusch et al, 2016; Marmot & Bell, 2019; Wepner & Gieseke, 2018; WHO, 2019). Gender influences pathways of care, leading to different experiences and use of health services by men and women (Manandhar et al., 2018; Redondo-Sendino et al., 2006; Thompson et  al., 2016; WHO EURO, 2020a, 2020b). This includes both curative and preventive services, and tends to result in lower rates of service use by men (Das et al., 2018; Pattyn et al., 2015; Wilkins et al., 2008). Also worth highlighting is that out-of-pocket expenditure for health care particularly impacts women’s use of services (Manandhar et al., 2018; Onah & Govender, 2014; Saikia & Bora, 2016), and after engaging with health systems, gender influences the intensity and effectiveness of the care received – with a noted negative impact on women’s health outcomes in the case of cardiovascular disease ( Jarvie & Foody, 2010; Khamis et al., 2016).

POLITICAL AND POLICY DEVELOPMENTS The policy seeds of the pending epidemiological transition from acute and infectious diseases to chronic and non-communicable disease were sown in the late 1980s, well before geopolitical strategizing gave rise to the 4×4 risk factor–disease matrix that resulted from the alignment of disease-specific civil society movements that conjoined in the early 2000s and the adoption of the acronym NCDs. In 1981, the publication of WHO’s Global Strategy for Health for All by the Year 2000 created clear strategic inroads to prevent and control NCDs by addressing lifestyles and the physical environment, acknowledging that half of all deaths in “developed countries” were due to cardiovascular disease. The interlinkage of the environment, industrialization, urbanization, and socioeconomic problems, as well as education and literacy and extreme inequalities in per capita gross national product, were well established areas of concern for WHO in the early 1980s; gender did not to appear until the mid-1990s. Following the 1981 global strategy came the 1985 World Health Assembly Resolution 38.30 on the Prevention and Control of Non-Communicable Diseases. But in the face of the persistent challenge of infectious disease in the Global South, coupled with the start of the global HIV/AIDS epidemic, NCDs once again slid from the agenda. And so, despite an early start at the tipping point of the epidemiological transition, global policy approaches became once again disease specific for a further decade, with several WHA resolutions but no concerted effort to align the diseases as a global challenge with common drivers. Yet all of the policy developments pointed to the multiple and complex interactions of social and economic axes of power, privilege, and access. It was not until the 1997 World Health Report that attention once again was paid to the data. The report described the phenomenon of the “double burden” threat to “global health” as chronic non-communicable diseases (WHO, 1997, p. v) emerged at alarming rates in poorer regions of the world, causing a b ­ urden in suffering, disability, and growing co-morbidities. Confronting chronic conditions and the crisis of suffering that accompany them was the theme of the 1997 report, which highlighted that chronic

Prioritizing Non-communicable Diseases at the Intersections

drivers

risk factors

NCDs

heart diseases, stroke inequality chronic respiratory diseases

medical innovation patient empowerment

diabetes urban development demographic change climate change workplace education, health literacy

tobacco, alchohol, fat, salt, sugar, lack of physical acitvity, obesity, hypertension

breast cancer

colon cancer

depression musculoskeletal disorders

agriculture, food production

Figure 21.1.  Example of cause-effect relationship of drivers and risk factors for non-communicable diseases. Some drivers help to contain risk factors while others have a leverage effect. Source: Giesecke S, Guiffrè G et al. (2015) Horizon Scanning report with annotated short list of drivers. FRESHER Deliverable D 3.1. (not available online)—cited in: Wepner, B., & Giesecke, S. (2018). Drivers, trends and scenarios for the future of health in Europe. Impressions from the FRESHER project. European Journal of Futures Research, 6(1), 2 (page 5). Used with permission.

diseases killed 24 million people a year – almost half of all deaths worldwide. C ­ ompared to today’s data, these seem slight as it is now estimated that NCDs are responsible for at least 71 per cent of all deaths globally. As the millennium turned, attention to NCDs increased, although not enough to warrant inclusion in the Millennium Development Goals, something of a missed opportunity given the trends evident in the epidemiological data. The year 2000 did, however, mark the passing of a coherent global strategy (WHA Resolution 53.17) that certainly pushed the agenda on research, prevention, and the need for collaboration and capacity building. But this was for the second time followed by a period of disease-specific approaches that eschewed the commonalities of these diseases while also perpetuating a siloed approach in the activities of WHO. That was until 2008 when the first WHO action plan for NCDs was published: the 2008–2013 Action Plan for the Global Strategy for the ­Prevention and Control of Non-communicable Diseases. Here, the emphasis was placed on the ­impact of NCDs on poor and disadvantaged people in low- and middle-income countries. The plan

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called for attention to diseases that affect women to promote women’s health and g­ ender equality; ­national policies and plans that pay attention to gender, ethnic, and socioeconomic ­inequalities, together with the needs of persons with disabilities; and the collection of data disaggregated by age, gender, and socioeconomic groups. Lifting and sustaining health issues on the global stage is not something WHO can do alone; as the HIV/AIDS movement so successfully illustrated, the role of civil society and its networks in catalyzing efforts is critical to all global health prioritizations; most especially, their political prioritization enables the release of resources and a global platform of engagement (Shiffman & Smith, 2007; Shiffman, 2016). In May 2009, this happened for NCDs. The otherwise siloed international federations of each of the four primary NCDs of concern (International Diabetes Federation [IDF], Union of International Cancer Control, World Heart Federation [WHF], and the International Union Against Tuberculosis and Lung Disease) formed the NCD Alliance, a strategic civil society move that would propel NCDs on to the world’s political stage and leverage their collective geopolitical stakeholders to lobby at the highest levels. The Alliance has been active in raising ­attention to the needs of women and girls and collaborating with global efforts advancing maternal, newborn, and child health and women’s health, rights, and well-being. Notably, the Alliance has stated that without such specific attention, “the impact of NCDs threatens to ... u ­ ndermine future efforts to ensure gender equity and healthy lives for all” (NCD Alliance, 2017, p. 2). By May 2010, and largely in part to civil society efforts, the United Nations General A ­ ssembly under resolution 64/265 approved the High-Level Summit on NCDs for September 2011, only the second time in history that a health issue had made this level of impact at the United ­Nations ­General Assembly. UN Political Declarations on NCDs in 2011 and 2014 mentioned, albeit briefly, the differential effects of NCDs on women and men and called for gender-based approaches. ­Further, WHO has also recognized gender as a determinant influencing NCDs and NCD risk factors, and gender is a required consideration in designing NCD interventions (program budget ­description, and progress report for SDG 70/35). As a means of addressing the SDG agenda ­target of reducing premature mortality from NCDs through prevention and treatment (3.4), WHO (2013) developed a Global Action Plan for the Prevention and Control of NCDs 2013–2020 (adopted at WHA, 2013), which includes nine global targets that are said to have the greatest impact on global NCD mortality (WHO, 2013). To support implementation of the action plan, in 2014 WHO established a Global Coordination Mechanism on the Prevention and Control of NCDs (GCM/NCD). The GCM/NCD has focused on women and NCDs as an important thematic topic, with an emphasis on dispelling myths and raising awareness about women and NCDs. In September 2015, The Global Strategy for Women’s, Children’s and Adolescents’ Health (2016– 2030) (Every Woman Every Child [EWEC], 2015) was introduced, which includes a commitment to a one-third reduction in premature mortality from NCD). In 2017, WHO Regional Office for Europe, Division of Non-Communicable Disease established an expert group to produce the first regional report to support a gender-responsive approach to the excess burden and premature mortality of men in the region (WHO EURO, 2017). It culminated in the first WHO strategy dedicated to the health of men that also advocates, even in its title, “better health through a gender approach” (WHO EURO, 2018).

Prioritizing Non-communicable Diseases at the Intersections

By 2018, the Third UN High-Level Meeting on NCDs was held in New York during the ­ eneral Assembly, resulting in the UN Political Declaration on the Prevention and Control of NCDs G (United Nations General Assembly, 2018, sec. 14), which acknowledges that “mainstreaming a gender perspective into the prevention and control of NCDs is crucial for addressing the health risks of women and men of all ages, giving particular attention to the impact of NCDs on women in all settings.” While not quite reaching an intersectional framing the declaration gives at least full support to the social determinants and is inclusive of a human rights approach to health. Importantly, more recent developments include a WHO EURO (2020b) report titled Why Using a Gender Approach Can Accelerate Noncommunicable Disease Prevention and Control in the WHO European Region, which recognizes that women and men are not homogeneous groups, that their health opportunities and risks vary according to social, economic, environmental, and cultural influences throughout their lifetime, and that to understand these requires considering how gender intersects with other factors behind social inequalities, such as sexual orientation, gender identity, ethnicity, disability, or place of residence.

CANADA To strengthen national efforts and international cooperation in addressing the burden of NCDs, Canada has made a commitment to the WHO Global Action Plan for the Prevention and Control of Noncommunicable Diseases (2013), as well as to the 2030 SDGs agenda. At a national level, it has introduced a number of other initiatives, including the Preventing Chronic Disease Strategic Plan 2013–2016 (driven by the Public Health Agency of Canada’s Centre for Chronic Disease Prevention). The strategic plan was approved April 4, 2013, and included priorities, performance measures, and improved financial tracking for activities supporting healthy living, chronic disease prevention, and injury prevention. This plan, however, made no mention of issues related to gender. More recently, Improving Health Outcomes: A Paradigm Shift (2016–2019) was introduced, with again no mention of the differential effects of NCDs on the population or prioritizing any form of gender analysis. Another important development to address NCDs is the Canadian Institutes of Health ­Research Healthy Life Trajectories Initiative (HeLTI), introduced in 2017, which follows a developmental origins of health and disease (DOHaD) approach. DOHaD is a field based on the notion that environmental factors interact with genes during conception, fetal life, infancy, and early childhood, and that this programming affects the individual’s health later in life. The goals of HeLTI initiative are to generate evidence that will inform national policy and decision making for the improvement of health and the prevention of NCDs and position Canada as a global leader in the DOHaD field. As part of this initiative, interdisciplinary teams, focused on men, women, boys, and girls have been funded. The goal of the interdisciplinary teams is to improve health through an increased understanding of how biological, social, and environmental exposures impact human health and development. Each multi-disciplinary team engages both basic and social scientists and includes a focus on sex and gender outcomes. While promising, this focus does not extend to all activities of the Canadian Institutes of Health Research – Institute of Gender and Health (CIHR-IGH). To illustrate, in the new

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IGH strategic plan, Science Is Better with Sex and Gender: Strategic Plan 2018–2023 (CIHR-IGH, 2018), there is only one mention of chronic illness and no specific priority actions focused on NCDs.

CALLS FOR GENDER-FOCUSED ACTION In June 2015, the Lancet Commission on Women and Health noted that the global response to NCDs was not commensurate with their burden among women (Langer et al. 2015). Three enduring myths have been proposed for the neglect of NCDs in relation to women: (a) the persistent view that women’s health-related issues are defined through their reproductive capacity, (b) the misperception that NCDs primarily affect men, and (c) the notion that only women in high-income countries are affected by NCDs because of lifestyle choices (Madurawala, 2017; Peters et al., 2016). However, as evidenced by a number of key publications about sex-specific risk factor prevalence rates, time trends, associations of risk factors with health outcomes, and population-attributable risks, sex and gender play a major role in the context of NCD risk factors, mental health, and occupational health. For the most part, however, sex differences and gender disparities are still under-recognized (Peters et al., 2016). Moreover, they are not taken into consideration in peer review journal discussions or in recommendations or guidelines, and they are insufficiently taken into account in relation to interventions and their evaluations (European Gender Medicine Network, 2015). Indeed, until recently, the key messages of a global report on NCDs did not move beyond stating differences in prevalence between women and men (e.g., WHO, 2014) and many highlevel NCD studies, materials, guidelines, and policies on NCDs remain gender neutral (Australian Women’s Health Network, 2014). Increasing recognition exists now of the need for, and potential benefits of, undertaking gendered analyses that can capture NCD-related sex- and gender-related differences (e.g., NCD A ­ lliance, 2010; Norton et al., 2016; Pinkerton et al., 2015; Valson & Kutty, 2018). For instance, before the 2018 UN high level Commission on NCDs, Buse and Hawkes (2018) made the case that gender influences NCD rates in three interlinked ways: through interaction with the social, political, and economic determinants of disease (poverty, education, public policies, occupation, etc.); through influences on health behaviours (including the behaviours that put people at NCD risk – smoking tobacco, drinking alcohol, eating a healthy diet, and exercising – as well as the norms and expectations of care-seeking behaviours); and through gendered pathways of care in health services (the intensity of investigation, effectiveness of treatment, and experience of stigma). In turn, they urged the UN Commission to take the following actions: generate sex-disaggregated data that informs gender analysis and enables better understanding and action on the gendered dimensions of NCDs prevention and control, including the gendered determinants of exposure to NCDs risks, gendered health behaviours, and gendered health services responses and pathways to care; adopt specific measures to ensure more gender-equitable career pathways for providers of prevention and care of NCDs; and recognize and address inequitable gender norms governing patterns of NCDs care and support in which women undertake the bulk of this unpaid task (Buse & Hawkes, 2018). To date, the international efforts that do focus on NCDs and gender look mostly at women and girls and not men and boys. This can be observed, for example, in a 2016 paper published by the

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Oxford Martin School and the George Institute for Global Health at the University of Oxford: “Focus on NCDs to Save Millions of Women from Premature Death: Call for a New Global Agenda for Women’s Health.” The School and Institute argued that “it is imperative that global stakeholders consistently recognize, promote and allocate resources to address a broader health agenda for women and adolescent girls, with a focus on the established leading causes of death and disability for women and adolescent girls, namely NCDs” (Norton et al., 2016, p. 22). This focus has significant consequences. Neglect of gender relations, or the specific needs of men and boys in relation to health concerns such as NCDs, can worsen health inequity and harmful gender norms (Baker & Shand, 2017). A notable exception can be found in the first (of three) gender-focused goals to address NCDs put forward by PAHO (pro-poor and gender-sensitive policies), which mention both men and women, and address the different NCD prevention and treatment needs of women and men, with the aim of early diagnosis of and responses to NCDs (PAHO, 2012). Nevertheless, the remaining two goals – use of ­ revention and control and investment in girls, women, and primary health care for NCD p their health – make no mention of men or the gender relations in which women experience their lives and health. Further, while international efforts and commitments to addressing the particular needs of women and girls in relation to NCDs are increasing (e.g., Alzheimer’s Disease International, 2015; EWEC, 2017; IDF, 2017; NCD Alliance, 2016; WHF, 2017; WHO, 2020), more effort needs to be paid to the significant diversity among women, men, and gender-­diverse people. This must involve examining trends both within and between countries in ways that move beyond merely recognizing diversity and towards concrete transformative actions responding to diverse needs.

COMPLICATING A GENDER APPROACH AND THINKING TOWARDS INTERSECTIONALITY Important shifts are, however, starting to take place in the larger field of health and development, which reflect more nuanced thinking about gender, and the explicit recognition that gender intersects with other factors that result in health inequities. This is evident, for example, in the actions shown in box 21.1, suggested by WHO (Manandhar et al., 2018), on how to bring gender-­ transformative approaches to the UN 2030 SDG agenda.

BOX 21.1 ACTIONS TO PROMOTE GENDER-TRANSFORMATIVE APPROACHES IN THE SUSTAINABLE DEVELOPMENT GOALS TO IMPROVE HEALTH 1 Move beyond equating gender with women. Global, national, and local health policy needs to take account of how the roles, behaviours, activities, attributes, and opportunities of males and females are based on different levels of power. This understanding of gender

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as a social and relational construct of power amplifies inequities in health for everyone and intersects with other drivers of inequities. Adopt a holistic approach to analysis and action on gender. This approach will intersect with three domains of health: social determinants, health-seeking behaviour, and service delivery and health-system responses, and hence reach across the 2030 agenda for sustainable development. Applying gender to one of these domains alone will fail to ­address inequities in health efficiently. Invest in more gender analysis of sex-disaggregated data, alongside other stratifiers of social and health inequity. Global health journals should encourage authors to include a gender analysis of sex-disaggregated data, including how the social construction of masculinities and femininities shape men’s and women’s health. Acknowledge and act on the gendered nature of the health workforce. Formulate ­gender-sensitive policies and health professional regulations through all levels of health governance to ensure gender parity, more leadership roles for women, and decent conditions of work for all. Break down the isolated policy structures between different government sectors and program areas and build a broad multi-stakeholder coalition for gender in global health. Such a coalition will aim to transcend narrow disease-focused approaches and engage more with civil society and with policymakers beyond ministries of health. Support transparency and accountability mechanisms at the country level. This can be done through strengthening a gendered health focus in voluntary national reviews, United Nations development assistance frameworks, and national health sector plans and programs, building on the approach developed by Global Health 50/50 (2018).

These actions are important precursors not only to address and expand notions of gender but arguably to broaden the way in which inequities are conceptualized and broaden understandings as to what is required to capture individuals and groups of differently situated persons who are at the intersection of multiple social identities. This movement is part of a growing trend to shine light on how existing frameworks and tools that are used to interrogate and respond to health equities (including gender analyses) need to better recognize and analyse a diversity of experiences (Bauer, 2014; Beckfield et al., 2017; Hankivsky, 2012; Hankivsky & Jordan-Zachery, 2019). So while sex and gender differentially affect experience, NCDs are caused by a complex combination of factors, including but not limited to sex and gender, originating at many levels, from individual behaviour to global wealth distribution. Gender intersects with other drivers of ­inequality – ­including socioeconomic status, education attainment. and others – to amplify vulnerability to poor NCD health outcomes. Evidence shows that NCDs disproportionately affect people from low socioeconomic backgrounds (e.g., Wepner & Giesecke, 2018) and that there is significant cross-national heterogeneity concerning educational inequalities in the experience of NCDs (McNamara et al., 2017). Further, populations most vulnerable to NCDs are not limited to

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women but include Indigenous peoples, the elderly, ethnic minorities, people with low socioeconomic status, immigrants, and young people (Propel Centre for Population Health Impact, 2015; Yeates et al., 2015). Thus, a gender lens needs to be broadened to capture individuals and groups that are at interactions of multiple social locations. Such recognition is taking hold and those working to advance issues on gender and NCDs are responding. For example, one response to the proposal of Buse and Hawkes (2018, discussed above) came from the leader of the Gender, Equity, Rights Team at WHO, Veronica Magar, who called for a gender-intersectionality research agenda. According to Magar (2018), this would entail collecting, analysing, and reporting reliable and timely information on health status, social determinants of health, and health system performance broken down by sex, age, and other equity stratifiers and using mixed methods, including participatory approaches, to explore the role of gender power relations. Collecting and reporting of sex disaggregated data alongside data on other key drivers of health inequities, such as age, geographical location, socioeconomic status, and ethnicity and Indigenous status, is essential. It is also the case that statistical presentation of sex-disaggregated data is insufficient if it is not accompanied by additional, more nuanced qualitative gender analysis of the influence of gender in their specific contexts. There is increasing and urgent need to undertake systematic gender analysis on NCD data to fully understand the complexity of context and nuances of intersectional determinants, including gender, to respond both appropriately and effectively to these rising challenges. But understanding the importance of how gender intersects and is shaped and modified by other factors in the context of NCDs is not limited to an analysis of individual social locations. Reflecting back to Buse and Hawkes (2018), they argue that gender influences NCD through interaction with the social, political, and economic determinants of disease (poverty, education, occupation, etc.). And here, intersectionality can be particularly informative. As Kapilashrami et al. (2015) noted, intersectionality can offer a framework to help researchers look beyond social categories towards social and power dynamics, and thus investigate structural forces shaping inequalities rather than only individual-level behaviours and risk factors. Specifically, intersectionality provides a framework for understanding how the different processes and structures of inequity interact with one another to create the context in which individual persons are able to make choices about their health, and in terms of whether they are able to access appropriate and responsive health services (e.g., Kapilashrami & Hankivsky, 2018; Hankivsky et al., 2014). This is especially salient for the NCDs field, where there is a shift from solely focusing on telling individuals to make healthier choices to acknowledging the broader structures and processes that create environments in which choices can be made. In relation to NCDs, this includes paying attention to, for example, unhealthy commodity industries (e.g., tobacco, alcohol) as structural drivers of health inequalities (Collin & Hill, 2016) and broader policies that extend beyond health care systems. And yet, with few exceptions (e.g., Fisk et  al., 2018; Eikemo et  al., 2018; Hankivsky, 2020; Hernández-Yumar et al., 2018; Rai et al., 2020; Rijal et al., 2019), an intersectionality approach remains on the periphery of NCDs research and international and national policy responses. For instance, in their recent examination of NCDs, Rijal et al. (2019) observed that the intersectionality of gender and age from the perspectives of health financing and coping strategies among households has not been studied yet in low- and middle-income countries (Rijal et  al., 2019).

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Further, Eikemo et al., (2018), have argued that “the relationship between the multiple intersecting dimensions of social positioning and non-communicable diseases (NCDs) is not adequately examined in the European context” (p. 38). They call for all future research on social inequities in NCDs to adopt an intersectional approach and take into consideration the interplay between multiple dimensions of individual positions (e.g., ethnicity, gender, migration experience) and institutional factors such as labour market regulations and employment initiatives (Eikemo et al., 2018). In addition to these new research directions examining intersectionality in relation to NCDs, another promising opportunity lies in exploring how to integrate intersectionality through a life course approach to NCDs. A life course framing is effective for a number of reasons. It can help to capture how the risk of ill health can accumulate across life stages and generations. For instance, 70 per cent of preventable deaths in adults from NCDs have been linked to behaviours that started in and risks encountered in adolescence. Notably, 50 per cent of mental health–related issues are established by 14 years of age and 75 per cent by the age of 24 (Kuruvilla et al., 2018). Further, a life course approach can facilitate a holistic integration of individual, social, economic, and environmental considerations (Kuruvilla et  al., 2018; Peters et  al., 2016). According to Kuruvilla et al. (2018), properly applied, a life course approach can help realize the vision of SDG 3 (ensure healthy lives and promote well-being for all at all ages), ensure universal health coverage (UHC), and achieve health and well-being for all at all ages, including in relation to NCDs. To this end, they propose the conceptual framework for a life course approach to health shown in figure 21.2. Central to this framework is the focus on desired health outcomes as being achieved by applying human rights-based, gender-responsive, and equity-driven approaches to policymaking and program implementation. And yet the authors do not adequately define each of these or explicate the relationship between gender and equity, nor do they explicitly discuss intersectionality in the context of the life course approach and UHC, even though this connection is so relevant. As Mishra (2018) argued in her recent analysis of universal health coverage, “the most marginalised are persons and groups who are at the intersection of multiple social identities – their stories of exclusion and discrimination being due to the compounding effects of such multiple social identities” (para. 1). One challenge of applying intersectionality – and to build on what exists, including the WHO conceptual framework discussed above – is to clarify the relationship between concepts like genderdriven and equity-responsive, and specifically gender analysis and intersectionality, which are often conflated and not properly understood within both health and international development literature (for a useful in-depth discussion of the conflation that often occurs between these two approaches see Hankivsky and Hunting, chapter 8, this collection). Here the point is simply that intersectionality opens the possibility for disrupting the primacy of sex and gender in any analysis of NCDs, and instead sees these as inextricably linked to other factors. This may be a difficult direction to advance, especially given the focus on women, sex, and gender in much of the NCDs advocacy and policy directions developed thus far, and more specifically in relation to the gender-responsive focus of WHO conceptual framework. Nevertheless, important sources are emerging for exploring how intersectionality can be applied to life course thinking and even NCDs (e.g., Salma et al., 2018; see also Hankivsky and Etherington, chapter 2, this volume, for an in-depth discussion of the relationship between intersectionality and life course and intersectionality-informed life course frameworks). For example, Salma et  al. (2018), in their examination of Arab immigrant women’s experiences

Individual health outcomes

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Functional ability

Functional ability and intrinsic capacity vary across a range throughout life

Intrinsic capacity Birth, neonatal period and infancy

Early and later childhood and adolescence

Youth and adulthood (main employment and reproductive years)

Older adulthood

Life stage Social and environmental determinants of health Families and communities, heatlh services and systems and multisectroal factors related to sociocultural norms, economics, politics, physical environments and sustainable development Principles in practice for the realization of rights Apply a human rights-based, gender-responsive and equity-driven approach

Figure 21.2.  Conceptual framework for a life course approach to health Source: Kuruvilla, S., Sadana, R., Montesinos, E.V., Beard, J.,Vasdeki, J. F., de Carvalho, I. A.,  ... & Koller, T. (2018). A lifecourse approach to health: synergy with sustainable development goals. Bulletin of the World Health Organization, 96(1), 42–50. doi: 10.2471/BLT.17.198358. Licence: Creative Commons BY 3.0 IGO. (p. 43). Used with permission.

of managing health in the context of stroke prevention in Canada, used intersectionality in their data collection and analysis methods to reveal the fluid and interrelated social locations, shaped by structures of power, that women occupy across their life course and to point to more effective interventions for reducing the risk of stroke. Others have also noted that people living with NCDs need a platform for sharing their stories so that policy actors can understand the experiences and reality of persons from ethnic, disability-based, or other groups. Fully and directly involving diverse groups of people living with NCDs in all public health policy development, program planning, and implementation can work to ensure responses address the full range of intersecting challenges they face.

CONCLUSION While at the global level, policy recommendations, WHA Resolutions, and action plans all widely acknowledge the complex intersection of the drivers behind NCDs, including gender and increasingly gender and its intersections, none yet have found a way to build a robust intersectionality framework. The discussions swing between state level and broad sweeping policies to address some key commercial determinants and then back again to the individual level of risk taking and

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behaviour change. And yet there is so much more that can be achieved by examining the collective intersections that are shared among different groups whose disease burden and responses vary. Even a simple intersectional analysis of gender disaggregated data would render visible the groups facing the highest burden of NCDs. With growing awareness of the diversity of NCDs experiences and outcomes within and between countries globally, intersectionality provides a powerful, yet largely uninvestigated, conceptual handle for understanding the complicated phenomenon of NCDs and for starting the process of generating new knowledge and evidence for more effective interventions through health and health-shaping public policies at national and international levels.

DISCUSSION QUESTIONS 1 Why has the area of NCDs traditionally been neglected in the field of women’s health? 2 What insights have gendered approaches to NCDs shown, and how might an intersectionality approach advance these? 3 Why is an intersectionality approach to NCDs essential for mitigating the prevention and control of COVID-19 among those with the most precarious health? How can an intersectionality approach help advance understandings of the connection between communicable and non-communicable diseases among differently situated people of all genders?

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Olena Hankivsky, Claire Sommerville, and Mary Manandhar Khamis, R. Y., Ammari, T., & Mikhail, G. W. (2016). Gender differences in coronary heart disease. Heart, 102(14), 1142–1149. https://doi.org/10.1136/heartjnl-2014-306463 Kickbusch, I., Allen, L., & Franz, C. (2016). The commercial determinants of health. The Lancet Global Health, 4(12), e895–e896. https://doi.org/10.1016/S2214-109X(16)30217-0 Kuruvilla, S., Sadana, R., Montesinos, E. V., Beard, J., Vasdeki, J. F., de Carvalho, I. A., ... & Koller, T. (2018). A life-course approach to health: synergy with sustainable development goals. Bulletin of the World Health Organization, 96(1), 42. https://doi.org/10.2471/BLT.17.198358 Langer, A., Meleis, A., Knaul, F. M., Atun, R., Aran, M., Arreola-Ornelas, H., ... & Claeson, M. (2015). Women and health: the key for sustainable development. The Lancet, 386(9999), 1165–1210. https://doi .org/10.1016/S0140-6736(15)60497-4 Madurawala, S. (2017). The gendered face of NCDs: Can Sri Lanka beat the odds? https://www.ips.lk/talkinge conomics/2017/10/03/the-gendered-face-of-ncds-can-sri-lanka-beat-the-odds/ Magar, V. (2018, May 14). Re: Gender and NCDs—benign neglect in the face of a gaping window of opportunity [Comment on the blog post Gender and NCDs—benign neglect in the face of a gaping window of opportunity]. PLOS Blogs Network. https://blogs.plos.org/blog/2018/05/14/gender-and -ncds-benign-neglect-in-the-face-of-a-gaping-window-of-opportunity/ Manandhar, M., Hawkes, S., Buse, K., Nosrati, E., & Magar, V. (2018). Gender health and the 2030 agenda for sustainable development. https://www.who.int/bulletin/volumes/96/9/18-211607.pdf Marmot, M., & Bell, R. (2019). Social determinants and non-communicable diseases: Time for integrated action. BMJ, 364, l251. https://doi.org/10.1136/bmj.l251 McNamara, C. L., Balaj, M., Thomson, K. H., Eikemo, T. A., Solheim, E. F., & Bambra, C. (2017). The socioeconomic distribution of non-communicable diseases in Europe: Findings from the European Social Survey (2014) special module on the social determinants of health. The European Journal of Public Health, 27(Suppl. 1), 22–26. https://doi.org/10.1093/eurpub/ckw222 Mishra, M. (2018). Can intersectionality get us closer to universal health coverage? http://www .futurehealthsystems.org/blog/2018/4/6/can-intersectionality-get-us-closer-to-universal-health-coverage Naghavi, M., Abajobir, A. A., Abbafati, C., Abbas, K. M., Abd-Allah, F., Abera, S. F., ... & Ahmadi, A. (2017). Global, regional, and national age-sex specific mortality for 264 causes of death, 1980–2016: a systematic analysis for the Global Burden of Disease Study 2016. The Lancet, 390(10100), 1151–1210. https://doi.org/10.1016/S0140-6736(17)32152-9 NCD Alliance. (2010). NCDs: A priority for women’s health and development; global status report on noncommunicable diseases. World Health Organization. NCD Alliance. (2017). A call to action: Women and non-communicable diseases. https://www.womenandncds. org/content/dam/microsites/taskforce-on-women-and-non-communicable-diseases-ncds/resources /women-and-non-communicable-diseases-brochure.pdf Norton, R., Peters, S., Jha, V., Kennedy, S., & Woodward, M. (2016). Women’s health: A new global agenda [Oxford Martin policy paper]. Oxford Martin School. Nugent, R., Bertram, M. Y., Jan, S., Niessen, L. W., Sassi, F., Jamison, D. T., ... & Beaglehole, R. (2018). Investing in non-communicable disease prevention and management to advance the Sustainable Development Goals. The Lancet, 391(10134), 2029–2035. https://doi.org/10.1016/S0140 -6736(18)30667-6 Onah, M. N., & Govender, V. (2014). Out-of-pocket payments, health care access and utilisation in southeastern Nigeria: A gender perspective. PLoS One, 9(4), e93887. https://doi.org/10.1371/journal.pone.0093887 Pan-American Health Organization. (2012). NCDs and gender. https://www.paho.org/en/file/31559 /download?token=eR3xE009 Pattyn, E., Verhaeghe, M., & Bracke, P. (2015). The gender gap in mental health service use. SocialPpsychiatry and Psychiatric Epidemiology, 50(7), 1089–1095. https://doi.org/10.1007/s00127-015-1038-x Peters, S. A., Woodward, M., Jha, V., Kennedy, S., & Norton, R. (2016). Women’s health: A new global agenda. BMJ Global Health, 1(3), e000080. https://doi.org/10.1136/bmjgh-2016-000080

Prioritizing Non-communicable Diseases at the Intersections Pinkerton, K. E., Harbaugh, M., Han, M. K., Jourdan Le Saux, C., Van Winkle, L. S., Martin, W. J., Kosgei, R. J., Carter, E. J., Sitkin, N., Smiley-Jewell, S. M., & George, M. (2015). Women and lung disease. Sex differences and global health disparities. American Journal of Respiratory and Critical Care Medicine, 192(1), 11–16. https://doi.org/10.1164/rccm.201409-1740PP Propel Centre for Population Health Impact. (2015). Chronic disease prevention primer. Rai, S. S., Syurina, E. V., Peters, R., Putri, A. I., & Zweekhorst, M. (2020). Non-communicable diseasesrelated stigma: A mixed-methods systematic review. International Journal of Environmental Research and Public Health, 17(18), 6657. https://doi.org/10.3390/ijerph17186657 Rijal, A., Adhikari, T. B., Khan, J. A., & Berg-Beckhoff, G. (2018). The economic impact of non-communicable diseases among households in South Asia and their coping strategy: A systematic review. PloS One, 13(11), e0205745. https://doi.org/10.1371/journal.pone.0205745 Redondo-Sendino, Á., Guallar-Castillón, P., Banegas, J. R., & Rodríguez-Artalejo, F. (2006). Gender differences in the utilization of health-care services among the older adult population of Spain. BMC Public Health, 6(1), 155. https://doi.org/10.1186/1471-2458-6-155 Saikia, N., & Bora, J. K. (2016). Gender difference in health-care expenditure: Evidence from India human development survey. PloS One, 11(7), e0158332. https://doi.org/10.1371/journal.pone.0158332 Salma, J., Hunter, K. F., Ogilvie, L., & Keating, N. (2018). An intersectional exploration: Experiences of stroke prevention in middle-aged and older Arab Muslim immigrant women in Canada. Canadian Journal of Nursing Research, 50(3), 110–119. https://doi.org/10.1177/0844562118760076 Shiffman, J. (2016). Network advocacy and the emergence of global attention to newborn survival. Health Policy and Planning, 31(Suppl_1), i60-i73. https://doi.org/10.1093/heapol/czv092 Shiffman, J., & Smith, S. (2007). Generation of political priority for global health initiatives: a framework and case study of maternal mortality. The Lancet, 370(9595), 1370–1379. https://doi.org/10.1016/S0140 -6736(07)61579-7 Thompson, A. E., Anisimowicz, Y., Miedema, B., Hogg, W., Wodchis, W. P., & Aubrey-Bassler, K. (2016). The influence of gender and other patient characteristics on health care-seeking behaviour: A QUALICOPC study. BMC Family Practice, 17(1), 38. https://doi.org/10.1186/s12875-016-0440-0 United Nations General Assembly. (2018). Political declaration of the third high-level meeting of the General Assembly on the prevention and control of non-communicable Diseases [Resolution adopted by the General Assembly on 10 October 2018: A/RES/73/2. United Nations General Assembly, Seventy-third session]. World Health Organization. https://www.un.org/en/ga/search/view_doc.asp?symbol=A /RES/73/2. Valson, J. S., & Kutty, V. R. (2018). Gender differences in the relationship between built environment and non-communicable diseases: A systematic review. Journal of Public Health Research, 7(1). https://doi.org /10.4081/jphr.2018.1239 Vital Strategies. (2021). Investing in health: NCD prevention and COVID-19 recovery. https://www .vitalstrategies.org/investing-in-health-ncd-prevention-and-covid-19-recovery Wang, H., Abajobir, A. A., Abate, K. H., Abbafati, C., Abbas, K. M., Abd-Allah, F., Abera, S. F., Abraha, H. N., Abu-Raddad, L. J., Abu-Rmeileh, N. M. E., Adedeji, I. A., Adedoyin, R. A., Adetifa, I. M. O., Adetokunboh, O., Afshin, A., Aggarwal, R., Agrawal, A., Agrawal, S., Ahmad Kiadaliri, A., Ahmed, M. B., Aichour, A. N., Aichour, I., Aichour, M. T. E., Aiyar, S., ... & Murray, C. J. L. (2017). Global, regional, and national under-5 mortality, adult mortality, age-specific mortality, and life expectancy, 1970–2016: a systematic analysis for the Global Burden of Disease Study 2016. The Lancet, 390(10100), 1084–1150. https://doi.org/10.1016/S0140-6736(17)31833-0 Wepner, B., & Giesecke, S. (2018). Drivers, trends and scenarios for the future of health in Europe. Impressions from the FRESHER project. European Journal of Futures Research, 6(1), 2. https://doi.org /10.1007/s40309-017-0118-4 Wilkins, D., Payne, S., Granville, G., & Branney, P. (2008). The gender and access to help services study: Final report. Department of Health: Men’s Health Forum.

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Contributors

Billie Allan, MSW, PhD, is a Two-Spirit Anishinaabe-kwe person from Sharbot Lake, Ontario, and a humble visitor on territories of the Lekwungen-speaking peoples. Billie is currently an assistant professor in the School of Social Work at the University of Victoria and the chair of the ­Thunderbird Circle – Indigenous Social Work Educators’ Network. Greta R. Bauer is a professor in the Department of Epidemiology and Biostatistics in the Schulich School of Medicine and Dentistry, and an affiliate member of Gender, Sexuality, and Women’s Studies at Western University. She holds a CIHR Sex and Gender Science chair. Dr. Bauer came to Western after completing her PhD at the University of Minnesota School of Public Health and brings a strong public health focus to her work. Her primary research interests are in social marginalization and health, particularly as related to sexual and gender minority communities, and in quantitative research methodology for studying communities that experience marginalization. Her ongoing methods research seeks to incorporate intersectionality and m ­ ultidimensionality frameworks into population health research. For more than a decade, she has been a leader in ­community-based research on LGBT2SQ health, with a strong focus on trans health. Her work has been used in legislative and court processes regarding blood donation policies for gay and ­bisexual men, the addition of gender identity and expression to federal and provincial human rights codes, and legal challenges in multiple provinces regarding restrictive criteria changing sex designations on identity documents. Cecilia Benoit, PhD, of Mi’kmaw and French ancestry, is currently a scientist at the Canadian Institute for Substance Research and professor emeritus of sociology at the University of Victoria, BC, Canada. Across her three-decade career, she has been instrumental in making known the knowledge held by Indigenous midwives and birthing women in pre-settler and settler communities, and she worked diligently to change medical practices so that Indigenous and non-Indigenous

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Contributors

midwives can legally work and have their services reimbursed by the public purse. Cecilia’s other research has shed light on the forces that create social inequities for a variety of marginalized groups, all of which are overrepresented by Indigenous peoples, including women in Vancouver’s Downtown Eastside; street-involved youth in transition to adulthood; pregnant women and their families dealing with poverty, substance use, and other challenges; and people who sell sexual services. Using a community empowerment and transformative learning methodology that honours relational accountability, researcher reflexivity, and Indigenous worldviews, she works closely with those in need of services, front-line service providers, and other stakeholders to develop innovative interventions to promote equity, dignity, and human rights care for the disadvantaged groups she is privileged to work with. Cecilia has received many accolades, including from the Royal Society of Canada, the Canadian Academy of Health Sciences, and the governor general. In 2020 she received the Killam Prize for the Social Sciences. Gabriele Bolte holds a diploma and a PhD in theoretical medicine and a master’s in public health. She was appointed professor of social epidemiology at the University of Bremen, Germany, as well as head of the Department of Social Epidemiology of the Institute of Public Health and Nursing Research (IPP) in 2013. In 2014, she also became managing director of the IPP. Since 2019 she has been the head of the WHO Collaborating Centre for Environmental Health Inequalities at the IPP. Her main areas of research are urban health, environmental justice, equity impacts of public health interventions, and methods of gender-sensitive health research. Currently, she leads, among others, the collaborative research projects INGER (Integrating Gender into E ­ nvironmental Health Research: Building a Sound Evidence Basis for Gender-Sensitive Prevention and ­Environmental Health Protection) and DIVERGesTOOL (Toolbox for Operationalization of Sex/Gender ­Diversity in Research on Health Care, Health Promotion and Prevention), and she is responsible for the project AdvanceDataAnalysis (development of methods for gender-sensitive multivariable data analysis) within the collaborative research project AdvanceGender (Advancing Gender-­ Sensitive Health Reporting to Improve Prevention: Methods for a Gender-Sensitive Research Process of Population Studies). Sabina Chatterjee is an artist, a scholar, and a community facilitator. She had the privilege of working with street-involved youth for many years and was the director of antidote: Multiracial and Indigenous Girls and Women’s Network. Sabina is committed to honouring lived experiences and engaging in community research grounded in respect, relationship, and resilience. Decolonization and social justice are woven deeply into her activism and scholarship, and her commitment to anti-colonial, critical disability, and critical race praxis continues in her work with community organizations as a curriculum development and program design consultant. Cole Etherington is a senior research associate in the Clinical Epidemiology Program at the Ottawa Hospital Research Institute. Dr. Etherington’s current research applies an intersectional lens to knowledge translation in acute care. Her work focuses primarily on the multilevel factors shaping teamwork, provider occupational well-being, and patient outcomes and the implications of these factors for practice-changing interventions.

Contributors

Mei Lan Fang is a lecturer/assistant professor in health gerontology, located in the School of Health Sciences at the University of Dundee. Mei holds a master’s in public health, specializing in social and health inequities, and a PhD in urban studies, focused on environmental gerontology. Her postgraduate research progresses community-based participatory research concepts, theory, and methods for designing age-friendly environments and she was nominated for the MacFarlane Award for most outstanding doctoral research contribution at Heriot-Watt University. In the past 10 years, Mei has worked as a transdisciplinary research scientist and health sciences methodologist where she both uses and builds intersectional theory, methods and practice in critical public health, ethnic and migration studies, environmental gerontology, aging and technology, and global health promotion. Her current research aims to co-create intergenerational, age-friendly places and spaces with and for people of all ages across cultures and global contexts. As part of Mei’s work, she has produced a range of peer-reviewed publications and unpublished knowledge translation outputs, consisting of journal articles, books, book chapters, method protocols, published conference proceedings, guidelines, briefing notes, and conceptual models that all stem from a broad spectrum of completed and ongoing community-oriented and participatory projects. Wendy Frisby, PhD, is a professor emerita in the School of Kinesiology and former chair of ­Women’s and Gender Studies at the University of British Columbia. She received several grants and awards for her community-based health promotion research with immigrant women and women living on low incomes. Sepali Guruge, RN, is a professor at the Daphne Cockwell School of Nursing at Ryerson University. She has over 25 years of experience in immigration- and settlement-focused, c­ ommunity-based, collaborative, and interdisciplinary research that involves academic, public, and not-for-profit service sectors, advocacy groups, and ethnocultural communities. Sepali’s research and community involvement with immigrant populations in Canada has spanned that same 25 years, and within these diverse ethnocultural immigrant communities, she has worked with youth, older adults, women, men, and families. Over the last 15 years, Sepali has focused on the intersections of aging and immigration. Her research findings have been disseminated in various formats in over 15 languages, making her work accessible beyond English-speaking audiences. In recognition of her contributions to nursing and social sciences, she has received numerous awards and recognitions. Her work can be found at https://www.immigranthealthresearch.com. Helga K. Hallgrímsdóttir, PhD, is a professor in the School of Public Administration at the University of Victoria and research associate with the University of Victoria Centre for Global Studies. She is an interdisciplinary scholar who works across the fields of health, governance and politics, and social justice. Her research, which bridges questions around citizenship, especially barriers and opportunities for citizen participation, and intersectional approaches to understanding vulnerability and precarious/marginalized populations, has been funded by the Social Sciences and Humanities Research Council of Canada, the Canadian Institute of Health Research, and the EU Erasmus+ Jean Monnet Program.

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Contributors

Rebecca Hammond is a registered nurse with a MSc in community health and epidemiology. She has worked in both clinical and research contexts for over 15 years and has been a fierce advocate for trans rights, particularly around access to health services. She is the longest-serving ­co-investigator with Trans PULSE Canada and was a member of the original Trans PULSE project in Ontario – projects she has worked on with Dr. Greta Bauer. As a nurse, Rebecca has worked in primary care settings, including at Sherbourne Health and Planned Parenthood Toronto, in sexual health clinics such as the Hassle Free Clinic, and in women’s health, where she currently is a proud provider of abortion care services. She believes strongly in the principles of autonomy, ­self-determination, equity, and harm reduction and approaches her work with these always in mind. Her work with Sherbourne Health in Toronto includes helping to draft the most recent editions of the Trans Primary Care Guidelines. These are used widely to deliver inclusive and comprehensive care to trans people across Ontario and beyond. To help combat the COVID-19 pandemic, she is presently also working with Toronto Public Health to carry out its ambitious contact tracing work to help save lives across the city. She is happy to self-identify as a trans woman, provided cis women also place a descriptor in front of their gender. Olena Hankivsky is a professor, School of Public Policy, and director of the Institute for ­Intersectionality Research and Policy at Simon Fraser University, Vancouver. Dr. Hankivsky is trained as a political scientist. She is an internationally recognized expert in gender mainstreaming, ­gender-based analysis, and intersectionality-based analysis. Dr. Hankivsky has 20+ years’ ­experience working across academic, government, NGO, and international organizations, including the World Health Organization, United Nations, and OECD. Her publications have been featured in Lancet, BMJ, and Social Science and Medicine, and she has recently completed The Palgrave ­Handbook of Intersectionality in Public Policy with Dr. Julia Jordan Zachery (2019). In 2020, she was appointed as a commissioner to the Lancet Commission on Gender and Global Health. Cindy Holmes is an assistant professor in the School of Social Work at the University of ­V ictoria. Cindy’s interdisciplinary scholarship grows out of over 25 years of community work and is ­informed by decolonial and anti-racist feminist, queer, and trans theories, and the grassroots social justice movements from which these theories emerges. Her research and teaching interests include ­lesbian, gay, bisexual, queer, trans, and Two-Spirit (LGBTQ2S) well-being and health; colonization and decolonization; violence and trauma; geography, place, and identity; food stories and food security; intergenerational storytelling; participatory action research; and, photovoice and artsbased research. Cindy is a queer, cisgender, white settler of English, Scottish, and Irish ancestry raised in the traditional territory of the Mississaugas of the Credit First Nation in Guelph, Ontario, and currently lives with her family in Lekwungen territories in Victoria BC. Gemma Hunting is an international health equity consultant working to promote intersectionality-informed analysis within health research, policy, and practice. She has worked for national and international government bodies, organizations, and universities, including the Gender, Equity and Human Rights Team and Mental Health Team (WHO), the International Institute for Global Health (UN University), UN Women, the ­National Collaborating Centre for Determinants of

Contributors

Health in Canada, the Canadian Centre on Disability Studies, and the Public Health Agency of Canada. She has been published across a wide range of journals, including Journal of International Development, International Journal for Equity in Health, BMC Health Services Research, Women’s Health and Urban Life, and Research Integrity and Peer ­Review. Of note, Gemma authored Intersectional Qualitative Research: A Primer (2014) and co-developed the Intersectionality-Based Policy Analysis Framework (2012), which has been taken up across various global sectors and disciplines. She has also facilitated workshops and trainings in Canada and internationally on intersectionality-informed analysis and its value-added in addressing health inequities. Ilene Hyman is a social epidemiologist and an adjunct professor in the Dalla Lana School of ­Public Health, University of Toronto, where she sits on several university committees, supervises graduate students, and guest lectures. She is also an adjunct professor in the Graduate Health Program at York University, research affiliate at the Centre of Excellence in Immigration and Settlement, ­research affiliate at the Ryerson Centre for Immigration and Settlement, and director of evaluation at Endeavour Consulting for Non-Profits. The vast majority of Ilene’s work explores health and ­social equity among under-researched and equity-seeking communities in Canada (e.g., transgender, newcomer, racialized, low income, Indigenous). She has conducted dozens of qualitative, quantitative and mixed-methods studies exploring immigrant and refugee mental health, gender-based violence, cancer screening, diabetes management and control, and the effectiveness of settlement programs, intersectoral partnerships, and policy initiatives for immigrant integration and inclusion. Ngozi Iroanyah is a PhD student in health policy and equity studies at York University. Her research focuses on dementia-care policies and their impacts on immigrant seniors. She is most ­interested in theoretical frameworks of intersectionality, critical race theory, feminist political economy, and mixed methods approaches. Her research interests also include access and barriers to health for marginalized communities and resultant health status, with a strong emphasis on social justice and power dimensions. She currently lives in Toronto, where she helps with the care of her father, who has dementia. Mikael Jansson, PhD, is a scientist at the Canadian Institute for Substance Research at the ­University of Victoria, BC, Canada. Over his 25-year career, he has transitioned from discoveries derived from analyzing large aggregate population-based data sets to smaller data sets that include both quantitative and qualitative data. He is the author of 10 books and monographs, 50 referred ­articles and book chapters, 30 monographs and reports, and more than 100 conference and public presentations. He and members of his research teams have collected quantitative and qualitative data in more than 500 interviews with sex workers throughout North America and in Africa; more than 500 interviews with street-involved youth in Victoria, BC; and thousands of interviews with randomly selected youth in the Victoria, BC, area. Mikael is widely cited in the fields of selfharm, research methods, substance use, research ethics, stigma, and policy analysis. He is currently involved in research with people who sell sexual services, with a particular focus on stigma. This research shows that one of the most important determinants of health and well-being identified by research participants is the condemnation and discrimination that they report based on their

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interactions in private and public with individuals and institutions. His many years on the University of Victoria’s Human Research Ethics Board, including his time as chair of the board, ensure that the research teams that he is involved with conduct research that conforms to high ethical standards from start to finish. Christine Kelly, PhD, is an associate professor in community health sciences and a research ­affiliate with the Centre on Aging at the University of Manitoba. Informed by feminist and critical disability scholarship, Dr. Kelly uses qualitative methods to explore the politics of care, aging, and Canadian disability movements. She is co-editor of the collection The Aging —Disability Nexus (2020), co-editor of Mobilizing Metaphor: Art, Culture and Disability Activism in Canada (2016), and author of Disability Politics and Care: The Challenge of Direct Funding (2016), all published by UBC Press. Dr. Kelly is recognized for her expertise on directly funded home care in Canada. Andrea Krüsi, PhD, is an assistant professor of medicine at the University of ­British Columbia and a research scientist with the Centre for Gender and Sexual Health Equity. Dr. ­Krüsi’s work focuses broadly on the criminalization of sexuality, with a particular focus on how intersecting social and structural contexts, such as laws and policies, shape the health, safety, and well-­being of marginalized women. Dr. Krüsi leads a community-based participatory qualitative and arts-based research program focused on evaluating the impact of evolving legislative frameworks and criminal sanctions on the health and well-being of marginalized women. The aim is (1) to document the intersecting gendered lived experiences of evolving legislative frameworks (e.g., Protection of Communities and Exploited Persons Act and the criminalization of HIV ­non-disclosure) on health and social inequities among marginalized women and (2) to characterize trajectories of incarceration and community reintegration of women living with or affected by HIV to identify factors that influence access to social supports and HIV prevention and care during and after incarceration. This research is guided by a peer advisory board, as well as long-standing collaborations with a wide variety of community organizations including Sex Workers United Against Violence, Canadian Aboriginal AIDS Network, YouthCo, the Canadian HIV/AIDS Legal Network, and Pivot Legal Society. Ania Landy is a project manager at UBC in the School of Nursing and a contract faculty at Douglas College in the Department of Therapeutic Recreation. Ania has experience in collaborating with diverse communities on research initiatives, working within the public health care sector and within the non-profit community sector and is passionate about supporting innovative community work that aims to address critical social and community issues. Her research interests include an intersectional approach to understanding health inequities and participatory approaches to health research, with an emphasis on a critical exploration of community engagement in mental health and dementia research. Mary Manandhar holds a first degree (human sciences) from the University of Oxford and a master’s degree (human nutrition) and a research PhD from the London School of Hygiene and Tropical Medicine. She has lived and worked in many countries across South and South East Asia and East Africa for over 15 years, covering broad areas of population health, nutrition, and the life course. Much of her work contributed to building intersectional contextual evidence and analysis

Contributors

within health systems using qualitative methods and participatory approaches, often related to remote areas or to marginalized population groups, including Indigenous minorities, asylum seekers and refugees, islanders, and lesbian, gay, and bisexual people. Mary joined the WHO in headquarters in 2017 as technical officer for the Gender, Equity and Rights team. She joined the Ageing and Life Course team at the end of 2018 to support the Decade of Healthy Ageing. Atsuko Matsuoka is a professor in the School of Social Work, York University, Canada. Her research has addressed the importance of understanding intersectionality of oppression among immigrants, ethnic and racialized older adults, and animals. In addition to her interest in elder abuse and ethnic and racialized older adults, she is promoting consideration for animal-human relationships in social work. Her current research, which is supported by the Social Sciences and Humanities Research Council of Canada, examines trans-species social justice (­social justice beyond human animals) and social work. With John Sorenson, she co-edited Dog’s Best Friend?: Rethinking Canid-Human Relations (McGill & Queen University Press, 2019), Critical Animal Studies: Toward Trans-Species Social Justice (Rowman & Littlefield International, 2018), D ­ efining Critical Animal Studies: An Intersectional Social Justice Approach (Peter Lang Publishing, 2014) and Ghosts and Shadows: Constructions of Identity and Community in an African Diaspora (University of Toronto Press, 2001). Holly A. McKenzie is a Banting postdoctoral fellow with the University of Saskatchewan’s ­Department of Sociology on the homelands of the Métis and Treaty Six territory. Her community-­ engaged research program explores wellness from critical, decolonizing, and feminist frameworks. She e­ngages diverse quantitative and qualitative approaches to promote meaningful change to policy and practice. During her doctorate at the University of British Columbia, Holly facilitated a Canadian Institutes of Health Research funded study with urban Indigenous women living on the homelands of the Métis and Treaty One (Winnipeg), Treaty Four (Regina), and Treaty Six (Saskatoon) territories. This project focused on reproductive (in)justice(s) and highlighted that (1)  ­self-determination is central to Indigenous women’s reproductive and sexual justice; (2) ­Indigenous women continue to experience patterns of reproductive coercion when ­interacting with health care and social service providers; and (3) supportive and responsive practices foster ­Indigenous women’s wellness. Holly’s postdoctoral research will build on these findings through examining a holistic, responsive support: therapy dog visits. She is working with Dr. Colleen Dell and a multidisciplinary team to explore the question “What supports P ­ AWSitive interactions among therapy dog–handler teams and patients experiencing concerns related to mental health and/or substance use?” Holly is a white settler who grew up on her family farm on the homeland of the Métis and Treaty Four territory. She now lives in Saskatoon with her partner and Great Dane, Opal, and enjoys dog sports, reading, and camping. Emily Mena is a research associate at the Department of Social Epidemiology at the I­nstitute of Public Health and Nursing Research. She obtained a bachelor’s and master’s degree in public health. As a social epidemiologist, she is currently entrusted with the contextual development of the project AdvanceDataAnalysis within the collaborative research project AdvanceGender (­Advancing Gender-Sensitive Health Reporting to Improve Prevention: Methods for a

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­ ender-Sensitive ­Research Process of Population Studies). Her primary research focus is on stratG egies for ­intersectionality-informed and gender-sensitive quantitative data analyses. As a lecturer at the Faculty of Human and Health Sciences at the University of Bremen in Germany, she works in the fields of scientific working methods and epidemiology. Marina Morrow is professor and chair of the School of Health Policy and Management in the ­Faculty of Health at York University. Before coming to York she was the director of the CHIRfunded Centre for the Study of Gender, Social Inequities and Mental Health at Simon Fraser University. In her work, Marina is interested in better understanding the social, political, and institutional processes through which health and mental health policies and practices are d ­ eveloped and how social and health inequities are sustained or attenuated for different populations. ­Marina strongly supports public scholarship and collaborative research partnerships with community-based organizations, service users, health care practitioners, advocates, and policy decision makers. M ­ arina’s research interests are in critical health policy with foci on the following themes: (1) mental health reform, service provision, and access to health services, (2) mental health and social inequity, (3) mental health, citizen engagement, human rights, and social ­justice, (4) neo-liberal reforms and health, and (5) intersectional theoretical and methodological approaches in mental health. Marina is the lead editor of Critical Inquiries for Social Justice in Mental Health (University of Toronto Press, 2017). Rachel Phillips, PhD, is the executive director of Peers Victoria Resources Society, a peer led organization that provides a wide range of services to people currently or formerly in the sex industry in Victoria, BC. She has a background in health sociology, and her research interests focus on gender, sex work, social determinants of health, substance use, and stigma. Rachel is keenly interested in applying research evidence to policy and practice contexts and is a research affiliate of the Canadian Institute for Substance Use Research. Colleen Reid is faculty in the Department of Therapeutic Recreation and coordinator of the Research and Innovation Office at Douglas College. Colleen uses community-based participatory research approaches, including practitioner research, applied research, and feminist participatory action research, to study and promote health in the contexts of oppression, suffering, and stigma for marginalized groups. She has conducted research with low income women, women struggling with employability, individuals with lived experience of mental illness, and individuals with ­dementia. In her research and teaching Colleen focuses on critical social research methods, community d ­ evelopment, the determinants of health, and leisure and recreation. To her work she brings a strong commitment to social justice and participatory and inclusive approaches. Kate Rossiter, PhD, is a queer white settler living on the unceded territory of the Qayqayt First Nation. She is a researcher and educator in the field of gender-based violence and health, and works to improve supports and system responses for victims and survivors of intimate partner violence and sexual violence. She is the senior manager of provincial services at the Ending Violence Association of BC (EVA BC), a provincial community-based anti-violence organization in British Columbia, Canada, and was coordinator of the Safe Choices LGBT2SQ+ Support and Education

Contributors

Program. Kate collaborated with colleagues at BC Women’s Hospital + Health Centre, the BC Ministry of Health, and EVA BC to develop the online learning series Gender-Based Violence: We All Can Help – Improving the Health Sector Response and worked with Vancouver Coastal Health to develop an in-person intimate partner violence curriculum for primary health care providers in Vancouver’s Downtown Eastside that aligned with the provincial online learning series. Kate is an adjunct professor in the School of Criminology at Simon Fraser University, with the FREDA Centre for Research on Violence Against Women and Children, and co-investigator with the Canadian Domestic Homicide Prevention Initiative with Vulnerable Populations. Christabelle Sethna is a historian and professor in the Institute of Feminist and Gender Studies, University of Ottawa. She publishes on sex education, contraception, and abortion history. With Steve Hewitt, she is the co-author of Just Watch US: RCMP Surveillance of the Women’s Liberation Movement in Cold War Canada (McGill-Queen’s University Press, 2018). With Gayle Davis, she is the co-editor of Abortion Across Borders: Transnational Travel for Abortion Services ( Johns Hopkins University Press, 2019). Her most recent publication, co-edited with Christopher Dummitt, is No Place for the State: The Origins and Legacies of the 1969 Omnibus Bill (UBC Press, 2020). She is currently principal investigator of a SSHRC-funded project on international travel for abortion services. Kate Shannon, PhD, MPH, (she/her), a white settler, is a professor in Social Medicine and Canada research chair in gender equity, sexual health, and global policy at University of British Columbia. She is also current executive director of the Centre for Gender and Sexual Health Equity (https:// www.cgshe.ca) and holds a CIHR sex and gender science chair in advancing Canada’s agenda on gender-transformative sexual health. She brings over a decade of experience in community-based research, population health intervention research, and policy evaluation focused on gender equity, sexual health, and reproductive justice for women and gender diverse communities marginalized based on social, economic, and political disadvantages. She is strongly committed to research that affects change in policy and practice and meaningful engagement of communities. Judith Sixsmith is professor of health-related research at the School of Health Sciences at the University of Dundee, UK. Her research interests lie in the areas of health and well-being, where she explores the ways in which people, particularly older people, living in disadvantaged communities experience processes of marginalization within existing health, social, and cultural systems. She has substantial experience in directing research in the area of health and aging. Her current research includes projects on placemaking with older people, including issues of age-friendly cities and communities, aging and technology, intergenerational design, housing for cultural and religious minorities, and aging well in the right place. An expert in qualitative methodologies, Judith prioritizes the involvement of participants in the design, implementation, interpretation, and dissemination phases of her ­research, including co-researchers from highly marginalized groups, such as asylum seekers, refugees, and older frail people, within qualitative frameworks. Judith has also conducted survey and questionnaire studies, again reaching seldom-heard-from groups. She has published widely in the fields of aging, health, and community/environmental psychology, alongside publications concerning the use of visual methodologies and participatory processes.

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Janet Smylie is the director of the Well Living House Action Research Centre for Indigenous Infant, Child, and Family Health and Wellbeing, Tier 1 Canada research chair in Advancing Generative Health Services for Indigenous populations in Canada, and professor at the Dalla Lana School of Public Health, University of Toronto. Dr. Smylie’s research focuses on addressing Indigenous health inequities in partnership with Indigenous communities. She is particularly focused on ensuring all First Nations, Inuit, and Métis peoples are counted into health policy and planning wherever they live in ways that make sense to them, addressing anti-Indigenous racism in health services, and advancing community-rooted innovations in health services for Indigenous populations. She maintains a part-time clinical practice at Seventh Generation Midwives Toronto and has practised and taught family medicine in a variety of Indigenous communities, both urban and rural. A Métis woman, Dr. Smylie acknowledges her family, traditional teachers, and ceremonial lodge. Claire Somerville is a medical anthropologist and currently executive director of the Gender ­Centre at the Graduate Institute of International and Development Studies in Geneva, where her teaching includes courses on sex, gender, and the body in global health. Claire’s research explores the biosocial dimensions of disease, illness, and well-being, as well as the gendered governance and politics of global health policy and practice. Kristen W. Springer is associate professor of sociology at Rutgers University, the state u ­ niversity of New Jersey. Dr. Springer has a PhD in sociology, a master’s degree in public health, a bachelor’s degree in chemistry, and postdoctoral training in health inequalities from Columbia U ­ niversity. Her research centers on gender and health inequalities, with a focus on examining the ­interactive influence of biology and social environment. Some of her recent scholarship documents how ­masculinity leads to men’s poorer health through avoiding doctor visits and through increased cardiovascular and neuroendocrine stress reactions. Her current research explores how parents, children, and health care providers navigate medical transition services for non-binary youth and how these medical decisions have the potential to dramatically (re)shape the meaning of gender. She has published over 30 academic articles in a wide range of leading health and gender journals, has co-edited a special issue of Social Science and Medicine on gender and health, and has been featured in national and international news sources, including ABC News, LA Times, The New York Times, US News & World Report, Wall Street Journal, and USA Today. Kate Vallance, MA, is a research associate at the Canadian Institute for Substance Use Research (CISUR) at the University of Victoria in BC, Canada. She has worked in coordination and management of a wide variety of alcohol and other drug research projects at both the local and the national level during her time at CISUR. These projects have included the BC Alcohol and Other Drug Monitoring Project, the Canadian Managed Alcohol Program Study, the Canadian Alcohol Policy Evaluation Project, and most recently, the Northern Territories Alcohol Study examining the effectiveness of alcohol warning labels in Canada’s north. Kate completed her master of arts degree in sociology at the University of Victoria in 2009 and is currently undertaking doctoral research with the Centre for Alcohol Policy Research at La Trobe University, Melbourne. She has published nearly 50 research papers and book chapters on alcohol and other drug use during her career.

Contributors

Colleen Varcoe, RN, PhD, is a professor in the University of British Columbia School of Nursing. Her work aims to decrease inequity and violence, including interpersonal and structural forms of violence such as racism and poverty. She uses critical, decolonizing, antiracist, and intersectional approaches in her teaching, research. and service. Her completed research includes studies of risks and health effects of violence and how to promote health for women who experience violence, e­ specially Indigenous women. She has studied how to promote equity-oriented health care (­cultural safety, harm reduction, and trauma- and violence-informed care) at the organizational level and worked with various Indigenous communities, organizations, and issues, including in health care and criminal justice contexts. Bilkis Vissandjée PhD, is a professor in the School of Nursing and adjunct professor at the School of Public Health at the University of Montreal, Canada. She is a researcher at the SHERPA University Institute, the Quebec Population Health Research Network, the Public Health Research Centre, and the Centre for International Studies and Research of the University of Montreal Networks. She works with national and international partners to enhance public health research uptake, as well as conducting collaborative research on issues such as tuberculosis, diabetes type 2, gender-based violence, and women’s health in the context of migration and diversity. Bilkis sits on a number of committees, such as the Advisory Committee on Equity, Diversity and Inclusion Policy of the Canada Research Chairs Program, within which she champions the inclusion of equity, gender, and diversity in public health, academia, research, and practice. She currently leads a team grant funded by the Canadian Institute of Health Research and the European Commission on addressing the complex experiences related to female genital mutilation/excision in migrant-host countries. Recently, in collaboration with community workers, she has been involved in activities to address COVID-19-related safety measures and the risks of domestic violence for newcomers in the greater region of Montreal, with intersectional and equity perspectives. Bilkis has received many awards and recognitions for her work, including by the Canadian Women in Global Health Network, which nominated her in 2020 for the Canadian Women in Global Health List. The Women in Global Health Network also nominated her in 2018 as one of the Francophone Women Leaders in Global Health. Ryan Woolrych is director of The Urban Institute and professor in Urban Studies at Heriot-Watt University. He has expertise in health and well-being, social sustainability, age-friendly cities, and sense of place. His research works across a range of scales, including the street, neighbourhood, and city, to examine place-based supports for active and healthy aging. Dr. Woolrych applies principles of participatory research in his work, bringing together academics, practitioners, policymakers, and community groups to deliver social change. Audrey Yap is an associate professor in the Philosophy Department at the University of ­V ictoria, in Canada, which stands on unceded Lekwungen territory. She teaches logic and feminist p ­ hilosophy but works primarily in feminist epistemology, and in anti-oppressive philosophy more generally. She writes on issues around epistemic injustice and gendered violence and thinks a lot about how we can take an anti-carceral approach to dealing with violence.

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