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

Citation preview

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.

This page intentionally left blank 

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.

This page intentionally left blank 

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

ix

This page intentionally left blank 

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.

This page intentionally left blank 

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.

2

Women’s Health in Canada

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

3

4

Women’s Health in Canada

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.

5

6

Women’s Health in Canada

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

7

8

Women’s Health in Canada

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/

9

This page intentionally left blank 

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).

14

Olena Hankivsky

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

Women’s Health in the Twenty-First Century

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

15

16

Olena Hankivsky

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

Women’s Health in the Twenty-First Century

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.

17

18

Olena Hankivsky

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

Women’s Health in the Twenty-First Century

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

19

20

Olena Hankivsky

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

Women’s Health in the Twenty-First Century

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)

21

22

Olena Hankivsky

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.

Women’s Health in the Twenty-First Century

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).

23

24

Olena Hankivsky

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

Women’s Health in the Twenty-First Century

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?

REFERENCES Alexander, L. L., LaRosa, J. H., Bader, H., & Garfield, S. (2020). New dimensions in women’s health (8th ed.). Jones & Bartlett Learning. Allotey, P., & Remme, M. (2020, April 17). Gender equality should not be about competing vulnerabilities. The BMJ Opinion. https://blogs.bmj.com/bmj/2020/04/17/gender-equality-should-not-be-about -competing-vulnerabilities/ Annandale, E. (2009). Women’s health and social change. Routledge.

25

26

Olena Hankivsky Annandale, E. (2010). Health status and gender. In W. C. Cockerham (Ed.), The new Blackwell companion to medical sociology (pp. 97–112). Blackwell Publishing. Annandale, E. (2013). Gender theory and health. In W. Cockerham (Ed.), Medical sociology on the move: New directions in theory (pp. 155–171). Springer. Annandale, E. (2021). Health and gender. In W. C. Cockerham (Ed.), The Wiley Blackwell companion to medical sociology. Wiley. https://doi.org/10.1002/9781119633808.ch12 Australia. Department of Health. (2018). National strategy for women’s health, 2020–2030. https://www .health.gov.au/sites/default/files/documents/2021/05/national-women-s-health-strategy-2020-2030.pdf. Australia. Department of Health. (2019) National men’s health strategy, 2020–2030. https://www.health .gov.au/sites/default/files/documents/2021/05/national-men-s-health-strategy-2020-2030.pdf Australia. Department of Health and Ageing. (2010). National male health policy: Building on the strengths of Australian males. https://www.health.gov.au/internet/main/publishing.nsf/content/7935AC78159969 D4CA257BF0001C6B07/$File/MainDocument.pdf Baker, P., & Shand, T. (2017). Men’s health: Time for a new approach to policy and practice? Journal of Global Health, 7(1), 010306. https://doi.org/10.7189/jogh.07.010306 Baker, P. (2015). Review of the national men’s health policy and action plan, 2008–2013. Final report for the Health Service Executive. Men’s Health Forum in Ireland. http://www.mhfi.org/policyreview2015.pdf Baker, P. (2016). Men’s health: A global problem requiring global solutions. Trends in Urology & Men’s Health, 7(3), 11–14. https://doi.org/10.1002/tre.519 Baker, P. (2020), Men’s health policy: It is time for action. Trends Urology & Men Health, 11, 11–13. https:// doi.org/10.1002/tre.774 Batur, P., & Feagin, J. R. (2018). Handbook of the sociology of racial and ethnic relations (Handbooks of sociology and social research). Springer International Publishing. https://doi.org/10.1007/978-3-319-76757-4 Bauer, G. R., & Scheim, A. I. (2019). Advancing quantitative intersectionality research methods: Intracategorical and intercategorical approaches to shared and differential constructs. Social Science & Medicine, 226, 260–262. https://doi.org/10.1016/j.socscimed.2019.03.018 Benoit, C., & Shumka, L. (2009). Gendering the health determinants framework: Why girls’ and women’s health matters. Women’s Health Research Network. Betron, M., Gottert, A., Pulerwitz, J., Shattuck, D., & Stevanovic-Fenn, N. (2020). Men and COVID-19: Adding a gender lens. Global Public Health, 15(7), 1090–1092. https://doi.org/10.1080/17441692.2020 .1769702 Bird, C. E., & Rieker, P. P. (2008). Gender and health: The effects of constrained choices and social policies. Cambridge University Press. Bowleg, L. (2013). “Once you’ve blended the cake, you can’t take the parts back to the main ingredients”: Black, gay, and bisexual men’s descriptions and experiences of intersectionality. Sex Roles, 68(11–12), 754–767. Brittle, C., & Bird, C. E. (2007). Literature review on effective sex-and gender-based systems/models of care. U.S. Office on Women’s Health. Broom, A., & Tovey, P. (Eds.). (2009). Men’s health: Body, identity and social context. John Wiley & Sons. Bustreo, F., Ponchia, A. G., Rocco, C., & Hinton, R. (2021). Strengthening the transformative potential of gender mainstreaming in global health. EClinicalMedicine, 34, 100858. https://doi.org/10.1016 /j.eclinm.2021.100858 Central Statistics Office. (2015). Irish life tables, 2010–2012. http://www.cso.ie/en/releasesandpublications /er/ilt/irishlifetablesno162010-2012/ Canadian Institute of Health Research-Institute of Gender and Health. (2012). What a difference sex and gender make: A gender, sex and health research casebook. http://www.cihr-irsc.gc.ca/e/documents/What_a _Difference_Sex_and_Gender_Make-en.pdf Canadian Institute of Health Research-Institute of Gender and Health. (2016). Team grant: Advancing boys’ and men’s health research (2014–2019). http://www.cihr-irsc.gc.ca/e/49638.html

Women’s Health in the Twenty-First Century Canadian Institutes of Health Research-Institute of Gender and Health. (2018). Science is better with sex and gender: Strategic plan, 2018–2023. http://www.cihr-irsc.gc.ca/e/51310.html Clayton, J. A., & Collins, F. S. (2014). Policy: NIH to balance sex in cell and animal studies. Nature News, 509(7500), 282. https://doi.org/10.1038/509282a Clow, B., Pederson, A., Haworth-Brockman, M., & Bernier, J. (2009). Rising to the challenge: Sex and gender-based analysis for health planning, policy and research in Canada. Atlantic Centre of Excellence for Women’s Health. Connell, R. W. (2000). The men and the boys. University of California Press. Cooke, M., Waite, N., Cook, K., Milne, E., Chang, F., McCarthy, L., & Sproule, B. (2017). Incorporating sex, gender and vulnerable populations in a large multisite health research programme: The Ontario Pharmacy Evidence Network as a case study. Health Research Policy and Systems, 15(1), 20. https://doi.org /10.1186/s12961-017-0182-z Daniel, H., Erickson, S. M., Bornstein, S. S., for the Health and Public Policy Committee of the American College of Physicians. (2018). Women’s health policy in the United States: An American College of Physicians position paper. Annals of Internal Medicine, 168, 874–875. https://doi.org/10.7326 /M17-3344 Darmstadt, G. L., Heise, L., Gupta, G. R., Henry, S., Cislaghi, B., Greene, M. E., Hawkes, S., Hay, K., Heymann, J., Klugman, J., Levy, J. K., Raj, A., & Weber, A. M. (2019). Why now for a series on gender equality, norms, and health? The Lancet, 393(10189), 2374–2377. https://doi.org/10.1016/S0140-6736(19)30985-7 Davidson, P. M., Glass, N. E., & DiGiacomo, M. (2016). Global women’s health issues: Sex and gender matter. Medical Journal of Australia, 205(8), 346–348. https://doi.org/10.5694/mja16.00904 Douglas, F. C., Greener, J., Van Teijlingen, E., & Ludbrook, A. (2013). Services just for men? Insights from a national study of the well men services pilots. BMC Public Health, 13(1), 425. https://doi.org/10.1186 /1471-2458-13-425 Echo. (2013). Echo: Improving women’s health in Ontario: Sharing the legacy – Supporting future action, 2009–2012. Women’s College Hospital. http://womenscollegehospital.ca/assets/pdf/echo_improving _womens_health_in_ontario.pdf Edwards, L. V., Dennis, S., & Weaks, F. (2013). The WHISK (Women’s Health: Increasing the Awareness of Science and Knowledge) Pilot Project: Recognizing sex and gender differences in women’s health and wellness. Global Advances in Health and Medicine, 2(5), 54–58. https://doi.org/10.7453/gahmj .2013.053 Einstein, G., & Shildrick, M. (2009). The postconventional body: Retheorising women’s health. Social Science & Medicine, 69(2), 293–300. https://doi.org/10.1016/j.socscimed.2009.04.027 El-Noush, H., Silver, K. L., Pamba, A. O., & Singer, P. A. (2015). Innovating for women’s, children’s, and adolescents’ health. BMJ, 351, h4151. https://doi.org/10.1136/bmj.h4151 Esmailzade, H., Mafimoradi, S., Mirbahaeddin, S. E., Rostamigooran, N., & Farshadfar, F. (2016). Devising a national men’s health policy document: The current challenges to men’s health in Iran. International Journal of Men’s Health, 15(2), 174–193. Etherington, N. (2015). Race, gender, and the resources that matter: An investigation of intersectionality and health. Women Health, 55(7), 754–777. https://doi.org/10.1080/03630242.2015.1050544 Etienne, C. (2015). A new agenda for women’s health in the Americas. American Journal of Public Health, 37(4–5), 195–196. https://www.scielosp.org/pdf/rpsp/2015.v37n4-5/197-198/en European Commission. (2013). Gendered innovations: How gender analysis contributes to research. Report of the Expert Group Innovation through Gender. https://ec.europa.eu/research/science-society/document_library /pdf_06/gendered_innovations.pdf European Commission. (2020). The impact of sex and gender in the COVID-19 pandemic. https://rm.coe.int /2020-06-02-studie-eu-ki0420271enn-en/16809f056f Every Women Every Child. (2015). The global strategy for women’s, children’s and adolescents’ health (2016–2030). http://www.everywomaneverychild.org/wp-content/uploads/2016/06/EWEC_GS_BROCHURE_ENG _WEB_newlogo_v02.pdf

27

28

Olena Hankivsky Fausto-Sterling, A. (2012). The dynamic development of gender variability. Journal of homosexuality, 59(3), 398–421. https://doi.org/10.1080/00918369.2012.653310 Frohard-Dourlent, H., Dobson, S., Clark, B. A., Doull, M., & Saewyc, E. M. (2017). “I would have preferred more options”: Accounting for non-binary youth in health research. Nursing inquiry, 24(1), e12150. https://doi.org/10.1111/nin.12150 Gahagan, J., & Bryson, M. (2021) Sex- and gender-based analysis in public health. Springer. Galdas, P. M., Johnson, J. L., Percy, M. E., & Ratner, P. A. (2010). Help seeking for cardiac symptoms: Beyond the masculine–feminine binary. Social Science & Medicine, 71(1), 18–24. https://doi.org/10.1016 /j.socscimed.2010.03.006 Garfield, C. F., Isacco, A., & Sahker, E. (2013). Religion and spirituality as important components of men’s health and wellness: An analytic review. American Journal of Lifestyle Medicine, 7(1), 27–37. https://doi .org/10.1177/1559827612444530 Gatrell, C. J. (2011). “I’m a bad mum”: Pregnant presenteeism and poor health at work. Social Science & Medicine, 72(4), 478–485. https://doi.org/10.1016/j.socscimed.2010.11.020 Gausman, J., & Langer, A. (2020). Sex and gender disparities in the COVID-19 pandemic. Journal of Women’s Health, 29(4), 465–466. https://doi.org/10.1089/jwh.2020.8472 Gebhard, C., Regitz-Zagrosek, V., Neuhauser, H. K., Morgan, R., & Klein, S. L. (2020). Impact of sex and gender on COVID-19 outcomes in Europe. Biology of Sex Differences, 11(1), 29. https://doi.org/10.1186 /s13293-020-00304-9 Geller, S., Pomerov, C., & Thomas, P. A. (2013). Women’s health research: Road map to the future. Global Advances in Health and Medicine, 2(5), 5–6. https://doi.org/10.7453/gahmj.2013.069 Gender and Health Alliance’s Research Working Group. (2015). Gender and health knowledge agenda. Netherlands Organisation for Health Research and Development. https://www.researchgate.net /publication/280941666_Gender_and_Health_Knowledge_Agenda Gendered Innovations. (2011). What is gendered innovations? http://genderedinnovations.stanford.edu/what -is-gendered-innovations.html GENDER-NET. (2013). Promoting gender equality in research institutions and integration of the gender dimension in research contents. https://cordis.europa.eu/project/id/618124/reporting George Institute for Global Health India. (2016, May). Framing women’s health issues in 21st century India – A policy report. George Institute for Global Health. http://www.georgeinstitute.org/sites/default/files /framing-womens-health-issues-in-21st-century-india.pdf The gendered dimensions of COVID-19. (2020). The Lancet, 395(10231), 1168. https://www.ncbi.nlm.nih .gov/pmc/articles/PMC7146664/pdf/main.pdf. https://doi.org/10.1016/S0140-6736(20)30823-0 Ghebreyesus, T. A., Miambo-Ngcuka P., Malone, D. (2020, October 27). Recommitting to women’s health 25 years after the Beijing Platform for Action on Women: what must governments do?. The BMJ Opinion. https://blogs.bmj.com/bmj/2020/10/27/recommitting -to-womens-health-25-years-after-the-beijing-platform-for-action-on-women-what-must -governments-do/ Giorgianni Jr, S. J., Porche, D. J., Williams, S. T., Matope, J. H., & Leonard, B. L. (2013). Developing the discipline and practice of comprehensive men’s health. American Journal of Men’s Health, 7(4), 342–349. https://doi.org/10.1177/1557988313478649 Global Action on Men’s Health. (2017a). The problems: The scale of the global challenge in men’s health. http:// gamh.org/the-facts/the-problems/ Global Action on Men’s Health. (2017b). About us. http://gamh.org/about-us/ Gochfeld, M. (2010). Sex-gender research sensitivity and healthcare disparities. Journal of Women’s Health, 19(2), 189–194. https://doi.org/10.1089/jwh.2009.1632 Government of Western Australia Department of Health. (2017). Western Australian women’s health strategy, 2018–2023. https://www.kemh.health.wa.gov.au/~/media/Files/Hospitals/WNHS/Our%20Services /State-wide%20Services/WHSP/WAWomensHealthStrategyFinal.pdf

Women’s Health in the Twenty-First Century Greaves, L. (2012). Why put gender and sex into health research? In J. Oliffe & L. Greaves (Eds.), Designing and conducting gender, sex & health research (pp. 3–14). SAGE. Greaves, L. (2015). Women, gender, and health research. In P. Armstrong & J. Deadman (Eds.), Women’s health: Intersections of policy, research and practice (pp. 9–30). Women’s Press. Griffith, D. M. (2012). An intersectional approach to Men’s Health. Journal of Men’s Health, 9(2), 106–112. https://doi.org/10.1016/j.jomh.2012.03.003 Griffith, D. M. (2016). Biopsychosocial approaches to men’s health disparities research and policy. Behavioral Medicine, 42(3), 211–215. Griffith, D. M. (2020). Achieving men’s health equity. In K. B. Smalley, J. C. Warren, M. I. Fernández (Eds.), Health equity: A solutions-focused approach (pp. 197–215). Springer. Griffith, D. M., Metzl, J. M., & Gunter, K. (2011). Considering intersections of race and gender in interventions that address US men’s health disparities. Public Health, 125(7), 417–423. https://doi.org /10.1016/j.puhe.2011.04.014 Gupta, J., Betron, M., Brown, J., & Morgan, R. (2020). Mainstreaming gender into global health programming to improve women’s health. Health Care for Women International, 41(4), 476–488. https:// doi.org/10.1080/07399332.2019.1608209 Gupta, G. R., Oomman, N., Grown, C., Conn, K., Hawkes, S., Shawar, Y. R., Shiffman, J., Buse, K., Mehra, R., Bah, C. A., Heise, L., Greene, M. E., Weber, A. M., Heymann, J., Hay, K., Raj, A., Henry, S., Klugman, J., & Darmstadt, G. L. (2019). Gender equality and gender norms: framing the opportunities for health. The Lancet, 393(10190), 2550–2562. https://doi.org/10.1016/S0140-6736(19)30651-8 Hall, K. S. (2021). Advancing intersectional approaches for integrated women’s health care and health equity: The unrealized potential of family planning settings. Journal of Women’s Health, 30(9), 1213–1215. https://doi.org/10.1089/jwh.2020.9005 Hammarström, A., Johansson, K., Annandale, E., Ahlgren, C., Aléx, L., Christianson, M., Elwér, S., Eriksson, C., Fjellman-Wiklund, A., Gilenstam, K., Gustafsson, P. E., Harryson, L., Lehti, A. Stenberg, G., & Verdonk, P. (2014). Central gender theoretical concepts in health research: The state of the art. Journal of Epidemiology and Community Health, 68(2), 185–190. https://doi.org/10.1136/jech-2013-202572 Hankivsky, O. (2007). Gender based analysis and health policy: the need to rethink outdated strategies. In M. Morrow, O. Hankivsky, & C. Varcoe (Eds.), Women’s health in Canada: Critical perspectives on theory and policy (pp. 143–168). University ofToronto Press. Hankivsky, O. (Ed.). (2012). Intersectionality-based policy analysis framework. Institute for Intersectionality Research and Policy, Simon Fraser University. Hankivsky O. (2014). Intersectionality 101. Institute for Intersectionality Research and Policy, Simon Fraser University. Hankivsky O. (2021). Understanding pandemics through a sex- and gender-based analysis plus (SGBA+) lens. In J. Gahagan & M. K. Bryson (Eds.), Sex- and gender-based analysis in public health. Springer, https://doi.org/10.1007/978-3-030-71929-6_10 Hankivsky, O., & Christoffersen, A. (2008). Intersectionality and the determinants of health: A Canadian perspective. Critical Public Health, 18(3), 271–283. https://doi.org/10.1080/09581590802294296 Hankivsky, O., & Cormier, R. (2009). Intersectionality: Moving women’s health research and policy forward. Women’s Health Research Network. Hankivsky, O., Doyal, L., Einstein, G., Kelly, U., Shim, J., Weber, L., & Repta, R. (2017). The odd couple: Using biomedical and intersectional approaches to address health inequities. Global Health Action, 10(Suppl 2), Article 1326686. https://doi.org/10.1080/16549716.2017.1326686 Hankivsky, O., & Jordan-Zachery, J. (Eds.). (2018). The Palgrave handbook of intersectionality in public policy. Palgrave-McMillian. Hankivsky, O., & Kapilashrami, A. (2020). Beyond sex and gender analysis: An intersectional view of the COVID-19 pandemic outbreak and response. https://www.qmul.ac.uk/media/global-policy-institute/Policy -brief-COVID-19-and-intersectionality.pdf

29

30

Olena Hankivsky 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(1), 5. https://doi.org/10.1186/1475-9276-9-5 Hankivsky, O., Leeuw, S. D., Lee, J. A., Vissandjée, B., & Khanlou, N. (Eds.). (2011). Health inequalities in Canada: Intersectional frameworks, and practices. UBC Press. 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(1), 6. https://doi.org/10.1186/s41073 -018-0050-6 Hawkes, S., Allotey, P., Elhadj, A. S., Clark, J., & Horton, R. (2020). The Lancet Commission on Gender and Global Health. Lancet (London, England), 396(10250), 521–522. https://doi.org/10.1016 /S0140-6736(20)31547-6 Hawkes, S., & Buse, K. (2013). Gender and global health: Evidence, policy, and inconvenient truths. The Lancet, 381(9879), 1783–1787. https://doi.org/10.1016/S0140-6736(13)60253-6 Hearn, J. (2015). Men’s health and well-being: The case against a separate field. International Journal of Men’s Health, 14(3), 301. 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(1), 2. https://doi.org/10.1186/s41073-016-0007-6 Heise, L., Greene, M. E., Opper, N., Stavropoulou, M., Harper, C., Nascimento, M., & Zewdie, D. (2019). Gender inequality and restrictive gender norms: Framing the challenges to health. The Lancet, 393(10189), 2440–2454. https://doi.org/10.1016/S0140-6736(19)30652-X Holden, K. B., McGregor, B. S., Blanks, S. H., & Mahaffey, C. (2012). Psychosocial, socio-cultural, and environmental influences on mental health help-seeking among African-American men. Journal of Men’s Health, 9(2), 63–69. https://doi.org/10.1016/j.jomh.2012.03.002 Homan, P., Brown, T. H., & King, B. (2021). Structural intersectionality as a new direction for health disparities research. Journal of Health and Social Behavior, 62(3), 350–370. https://doi.org/10.1177 /00221465211032947 Institute of Medicine. (2001). The future of research on biological sex differences: Challenges and opportunities. In Exploring the biological contributions to human health: Does sex matter? (pp. 173–84). National Academies Press. Institute of Medicine. (2010). Women’s health research: Progress, pitfalls, and promise. National Academies Press. http://dx.doi.org/10.1080/07399332.2011.562837. Ireland. Department of Health and Children. (2008). National men’s health policy, 2008–2013: Working with men in Ireland to achieve optimum health and wellbeing. http://www.mhfi.org /menshealthpolicy.pdf Ironstone-Catterall, P., McDonough, P., Robertson, A., Payne, B., Rahder, B., Shaver, F., & Wakewich, P. (1998). Feminist research methodology and women’s health: A review of literature. National Network on Environments and Women’s Health. Johnson, J. L., Greaves, L., & Repta, R. (2007). Better science with sex and gender: A primer for health research. Women’s Health Research Network. Johnson, J., Sharman, Z., Vissandjee, B., & Stewart, D. E. (2014). Does a change in health research funding policy related to the integration of sex and gender have an impact? Public Library of Science ONE, 9(6), Article e99900. https://doi.org/10.1371/journal.pone.0099900 Kapilashrami, A. (2018). How serious are global health leaders about gender equality? BMJ, 361, Article k1462. https://doi.org/10.1136/bmj.k1462 Kim, E. M. (2017). Gender and the sustainable development goals. Global Social Policy, 17(2), 239–244. https://doi.org/10.1177/1468018117703444 Klinge, I. (2008). Gender perspectives in European research. Pharmacological Research, 58(3–4), 183–189. https://doi.org/10.1016/j.phrs.2008.07.011

Women’s Health in the Twenty-First Century Koehler, G. (2016). Tapping the sustainable development goals for progressive gender equity and equality policy? Gender & Development, 24(1), 53–68. https://doi.org/10.1080/13552074.2016.1142217 Kontis, V., Bennett J. E., Mathers, C. D., Li, G., Foreman, K., & Ezzati, M. (2017). Future life expectancy in 35 industrialised countries: Projections with a Bayesian model ensemble. Lancet, 389, 1323–1335. https://doi.org/10.1016/S0140-6736(16)32381-9 Kuhlmann, E., & Annandale, E. (2012). Mainstreaming gender into healthcare: A scoping exercise into policy transfer in England and Germany. Current Sociology, 60(4), 551–568. https://doi.org/10.1177 /0011392112438339 Langer, A., Meleis, A., Knaul, F. M., Atun, R., Aran, M., Arreola-Ornelas, H., Bhutta, Z. A., Binagwaho, A., Bonita, R., Caglia, J. M., Claeson, M., Davies, J., Donnay, F. A., Gausman, J. M., Glickman, C., Kearns, A. D., Kendall, T., Lozano, R., Seboni, N., Sen, G., Temin, M., & Frenk, J. (2015). Women and health: The key for sustainable development. Lancet, 386(9999): 1165–1210. https://doi.org/10.1016/S0140-6736(15)60497-4 Lee, Y.S., Behn, M., & Rexrode, K. M. (2021) Women’s health in times of emergency. We must take action. Journal of Women’s Health, 30(3), 289–292. Levant, R. F., & Wimer, D. J. (2014). Masculinity constructs as protective buffers and risk factors for men’s health. American Journal of Men’s Health, 8(2), 110–120. https://doi.org/10.1177/1557988313494408 Levy, J. K., Darmstadt, G. L., Ashby, C., Quandt, M., Halsey, E., Nagar, A., & Greene, M. E. (2020). Characteristics of successful programmes targeting gender inequality and restrictive gender norms for the health and wellbeing of children, adolescents, and young adults: a systematic review. The Lancet. Global Health, 8(2), e225–e236. https://doi.org/10.1016/S2214-109X(19)30495-4 Luy, M., & Minagawa, Y. (2014). Gender gaps: Life expectancy and proportion of life in poor health. Health Reports, 25(12), 12. https://www150.statcan.gc.ca/n1/en/pub/82-003-x/2014012/article/14127-eng.pdf MacDonald, J. (2016). A different framework for looking at men’s health. International Journal of Men’s Health, 15(3), 283. http://handle.uws.edu.au:8081/1959.7/uws:37791 Macedonia, C. R., Johnson, C. T., & Rajapakse, I. (2017). Advanced research and data methods in women’s health: Big data analytics, adaptive studies, and the road ahead. Obstetrics & Gynecology, 129(2), 249–264. https://doi.org/10.1097/AOG.0000000000001865 Manitoba Health. (2011). Manitoba women’s health strategy, 2011. https://www.gov.mb.ca/health/documents /strategy.pdf Mastroianni, A. C., & Henry, L. M. (2020). Closing the gap: Improving women’s health through research inclusion. In A. S. Iltis & D. MacKay (Eds.), The Oxford handbook of research ethics. Oxford. https://ssrn .com/abstract=3750399 Matud, M. P. (2017). Gender and health. In A. Alvinius (Ed.), Gender differences in different contexts (pp. 57–77). InTech. Mauvais-Jarvis, F., Bairey Merz, N., Barnes, P. J., Brinton, R. D., Carrero, J. J., DeMeo, D. L., De Vries, G. J., Epperson, C. N., Govindan, R., Klein, S. L., Lonardo, A., Maki, P. M., McCullough, L. D., RegitzZagrosek, V., Regensteiner, J. G., Rubin, J. B., Sandberg, K., & Suzuki, A. (2020). Sex and gender: modifiers of health, disease, and medicine. Lancet (London, England), 396(10250), 565–582. https://doi .org/10.1016/S0140-6736(20)31561-0 McCarthy, L., Milne, E., Waite, N., Cooke, M., Cook, K., Chang, F., & Sproule, B. A. (2017). Sex and gender-based analysis in pharmacy practice research: A scoping review. Research in Social and Administrative Pharmacy, 13(6), 1045–1054. https://doi.org/10.1016/j.sapharm.2016.11.007 Mena, E., Bolte, G., & 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), 199. https://doi.org/10.1186/s12939-019-1098-8 Meryn, S., & Shabsigh, R. (2009). Men’s health: past, present and future. Journal of Men’s Health, 6(3), 143–146. https://doi.org/10.1016/j.jomh.2009.08.191 Mobasheri A. (2021). Women’s health: A revised global agenda in the COVID-19 era? Case Reports in Women’s Health, 30, e00292. https://doi.org/10.1016/j.crwh.2021.e00292

31

32

Olena Hankivsky Montesanti, S. R. (2015). The role of structural and interpersonal violence in the lives of women: A conceptual shift in prevention of gender-based violence. BMC Women’s Health, 15(1), 93. https://doi.org /10.1186/s12905-015-0247-5 Morgan, R., George, A., Ssali, S., Hawkins, K., Molyneux, S., & Theobald, S. (2016). How to do (or not to do) … gender analysis in health systems research. Health Policy and Planning, 31(8), 1069–1078. https:// doi.org/10.1093/heapol/czw037 Morrow, M. (2007). “Our bodies our selves” in context: Reflections on the women’s health movement in Canada. In M. Morrow, O. Hankivsky, & C. Varcoe (Eds.), Women’s health in Canada: Critical perspectives on theory and policy (pp. 33–63). University of Toronto Press. Morrow, M., & Malcoe, L. (Eds.). (2017). Critical inquiries for social justice in mental health. University of Toronto Press. Mosca, L., Barrett-Connor, E., Wenger, N. K. (2011). Sex/gender differences in cardiovascular disease prevention: what a difference a decade makes. Circulation, 124(19), 2145–2154. https://doi.org/10.1161 /CIRCULATIONAHA.110.968792 Moseson, H., Zazanis, N., Goldberg, E., Fix, L., Durden, M., Stoeffler, A., Hastings, J., Cudlitz, L., LesserLee, B., Letcher, L., Reyes, A., & Obedin-Maliver, J. (2020). The imperative for transgender and gender nonbinary inclusion: Beyond women’s health. Obstetrics and Gynecology, 135(5), 1059–1068. https://doi .org/10.1097/AOG.0000000000003816 Mwangi, E. W., & Constance-Huggins, M. (2019). Intersectionality and Black women’s health: Making room for rurality. Journal of Progressive Human Services, 30(1), 11–24. https://doi.org/10.1080/10428232 .2017.1399037 Nagle, C., Skouteris, H., Morris, H., Nankervis, A., Rasmussen, B., Mayall, P., & Kennedy, R. L. (2013). Primary prevention of gestational diabetes for women who are overweight and obese: A randomised controlled trial. BMC Pregnancy and Childbirth, 13(1), 65. https://doi.org/10.1186/1471-2393-13-65 National Academies of Sciences, Engineering, and Medicine. (2016). Improving the health of women in the United States: Workshop summary. The National Academies Press. https://doi.org/10.17226/23441 National Institute of Health. (2016). Sex and gender: How being male or female can affect your health. https:// newsinhealth.nih.gov/2016/05/sex-gender National Institute of Health, Office of Research on Women’s Health. (2010). Moving into the future with new dimensions and strategies: A vision for 2020 for women’s health research. https://orwh.od.nih.gov /resources/pdf/ORWH_StrategicPlan2020_Vol1.pdf National Records of Scotland. (2016). Life expectancy for areas within Scotland, 2013–2015. https://www .nrscotland.gov.uk/files//statistics/life-expectancy-areas-in-scotland/2013-2015/1315le.pdf Neale, J. (2004). Gender and illicit drug use. The British Journal of Social Work, 34(6), 851–870. https://doi.org /10.1093/bjsw/bch105 Neale, J., Tompkins, C., Marshall, A., Treloar, C., & Strang, J. (2018). Do women with complex alcohol and other drug use histories want women-only residential treatment? Addiction, 113(6), 989–997. https://doi .org/10.1111/add.14131 New South Wales Ministry of Health. (2019). NSW women’s health framework. https://www.health.nsw.gov .au/women/Publications/womens-health-framework-2019.PDF Nieuwenhoven, L., & Klinge, I. (2010). Scientific excellence in applying sex-and gender-sensitive methods in biomedical and health research. Journal of Women’s Health, 19(2), 313–321. https://doi.org/10.1089 /jwh.2008.1156 Norton R. (2016). Women’s health: A new global agenda. Oxford Martin School. Office for National Statistics. (2016). Statistical bulletin: National life tables, UK: 2013–2015. https://www .ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/lifeexpectancies/bulletins /nationallifetablesunitedkingdom/20132015 Organisation for Economic Co-operation and Development. (2017). Health at a glance 2017: OECD indicators. OECD Publishing.

Women’s Health in the Twenty-First Century Oksuzyan, A., Juel, K., Vaupel, J. W., Christensen, K. (2008). Men: Good health and high mortality. Sex differences in health and aging. Aging Clinical and Experimental Research, 20(2), 91–102. https://doi.org /10.1007/BF03324754 Oliffe, J. L., Robertson, S., Frank, B., McCreary, D. R., Tremblay, G., & Goldenberg, S. L. (2010). Men’s health in Canada: A 2010 update. Journal of Men’s Health, 7(3), 189–192. https://doi.org/10.1016/j.jomh .2010.07.001 Payne, S. (2011). Beijing fifteen years on: The persistence of barriers to gender mainstreaming in health policy. Social Politics: International Studies in Gender, State & Society, 18(4), 515–542. https://doi.org /10.1093/sp/jxr019 Pederson, A., Greaves, L., & Poole, N. (2014). Gender-transformative health promotion for women: A framework for action. Health Promotion International, 30(1), 140–150. https://doi.org/10.1093/heapro /dau083 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 Pinn, V. W. (2013). Women’s health research: Current state of the art. Global Advances in Health and Medicine, 2(5), 8–10. https://doi.org/10.7453/gahmj.2013.063 Pinn, V. (2018). Perspectives from a pathologist: My journey on the path to women’s health research, sex and gender policy, and practice implications. Annual Review of Pathology: Mechanisms of Disease, 13(1), 1–25. https://doi.org/10.1146/annurev-pathol-020117-044020 Plank-Bazinet, J., Kornstein, S., Clayton, J., Mccaskill-Stevens, W., Wood, L., Cook, N., Tajuddin, S. M., Brown, G. M., Harris, T., Evans, M. K., Begg, L., Brooks, C. E., Miller, L. R., Mistretta, A. C., & Cornelison, T. (2016). A report of the women’s health congress workshop on the health of women of color: A critical intersection at the corner of sex/gender and race/ethnicity. Journal of Women’s Health, 25(1), 4–10. https://doi.org/10.1089/jwh.2015.5666 Racine, M., Tousignant-Laflamme, Y., Kloda, L. A., Dion, D., Dupuis, G., & Choinière, M. (2012). A systematic literature review of 10 years of research on sex/gender and experimental pain perception– part 2: Do biopsychosocial factors alter pain sensitivity differently in women and men? Pain, 153(3), 619–635. https://doi.org/10.1016/j.pain.2011.11.026 Read, J. G., & Gorman, B. K. (2010). Gender and health inequality. Annual Review of Sociology, 36, 371–386. https://doi.org/10.1146/annurev.soc.012809.102535 Restar, A. J., Sherwood, J., Edeza, A., Collins, C., & Operario, D. (2021). Expanding gender-based health equity framework for transgender populations. Transgender Health, 6(1), 1–4. https://doi.org/10.1089/trgh.2020.0026 Richardson, N., & Carroll, P. C. (2009). Getting men’s health onto a policy agenda – Charting the development of a national men’s health policy in Ireland. Journal of Men’s Health, 6(2), 105–113. https:// doi.org/10.1016/j.jomh.2009.03.004 Richardson, N., & Smith, J. A. (2011). National men’s health policies in Ireland and Australia: What are the challenges associated with transitioning from development to implementation? Public Health, 125(7), 424–432. https://doi.org/10.1016/j.puhe.2011.04.015 Richardson, N., Smith, J. A., Robertson, S., & Baker, P. (2019). Global men’s health policy. In D. M. Griffith, M. A. Bruce, & R. J. Thorpe (Eds.), Men’s health equity: a handbook (pp. 203–224)). Routledge. Ritz, S. A., Antle, D. M., Côté, J., Deroy, K., Fraleigh, N., Messing, K., Parent, L., St-Pierre, J., Vaillancourt, C., & Mergler, D. (2014). First steps for integrating sex and gender considerations into basic experimental biomedical research. The Federation of American Societies for Experimental Biology, 28(1), 4–13. https://doi.org/10.1096/fj.13-233395 Rosche, D. (2016). Agenda 2030 and the sustainable development goals: Gender equality at last? An Oxfam perspective. Gender & Development, 24(1), 111–126. https://doi.org/10.1080/13552074.2016.1142196 Roseboom, T. J. (2020). Why achieving gender equality is of fundamental importance to improve the health and well-being of future generations: a DOHaD perspective. Journal of Developmental Origins of Health and Disease, 11(2), 101–104. https://doi.org/10.1017/S2040174419000734

33

34

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

35

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,

Overhauling Life Course Approaches to Women’s Health

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).

37

38

Olena Hankivsky and Cole Etherington

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

39

40

Olena Hankivsky and Cole Etherington

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

41

42

Olena Hankivsky and Cole Etherington

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.

43

44

Olena Hankivsky and Cole Etherington

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,

45

46

Olena Hankivsky and Cole Etherington

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.

48

Olena Hankivsky and Cole Etherington

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.

49

50

Olena Hankivsky and Cole Etherington

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

51

52

Olena Hankivsky and Cole Etherington to women’s health in the post-2015 agenda. Bulletin of the World Health Organization, 91(9), 704–706. https://doi.org/10.2471/BLT.13.117622 Bastos, J. L., Harnois, C. E., & Paradies, Y. C. (2018). Health care barriers, racism, and intersectionality in Australia. Social Science & Medicine, 199, 209–218. https://doi.org/10.1016/j.socscimed.2017.05.010 BC Provincial Health Services Authority. (2013). Promoting health equity – Choosing appropriate indicators: Literature scan. http://nccdh.ca/resources/entry/promoting-health-equity-choosing-appropriate -indicators-literature-scan Bekker, M. H. J. (2003). Investigating gender within health research is more than sex disaggregation of data: A multi-facet gender and health model. Psychology, Health & Medicine, 8(2), 231–243. https://doi.org /10.1080/1354850031000087618 Bird, C. E., & Rieker, P. P. (2004, June). Rethinking gender differences in health: What is needed to integrate social and biological perspectives? [Conference presentation]. Health Inequalities Across the Life Course Conference, State College, PA, United States. Bird, C. E., & Rieker, P. P. (2008). Gender and health: The effects of constrained choices and social policies. Cambridge University Press. Brah, A., & Phoenix, A. (2004). Ain’t I a woman? Revisiting intersectionality. Journal of International Women’s Studies, 5(3), 75–86. Braveman, P. (2014). What is health equity and how does a life-course approach take us further toward it? Maternal and Child Health Journal, 18(2), 366–372. https://doi.org/10.1007/s10995-013-1226-9 Brown, T. H., & Hargrove, T. W. (2013). Multidimensional approaches to examining gender and racial/ ethnic stratification in health. Women, Gender, and Families of Color, 1(2), 180–206. https://doi.org /10.5406/womgenfamcol.1.2.0180 Brown, T. H., Richardson, L. J., Hargrove, T. W., & Thomas, C. S. (2016). Using multiple-hierarchy stratification and life course approaches to understand health inequalities: The intersecting consequences of race, gender, SES, and age. Journal of Health and Social Behavior, 57(2), 200–222. https://doi.org /10.1177/0022146516645165 Bustreo, F., Knaul, F. M., Bhadelia, A., Beard, J., & Carvalho, I. A. D. (2012). Women’s health beyond reproduction: Meeting the challenges. Bulletin of the World Health Organization, 90(7), 478–478A. https://doi.org/10.2471/BLT.12.103549 Cable, N. (2014). Life course approach in social epidemiology: An overview, application and future implications. Journal of Epidemiology, 24(5), 347–352. https://doi.org/10.2188/jea.JE20140045 Caiola, C., Docherty, S., Relf, M., & Barroso, J. (2014). Using an intersectional approach to study the impact of social determinants of health for African-American mothers living with HIV. Advances in Nursing Science, 37(4), 287. https://doi.org/10.1097/ANS.0000000000000046 Canadian Institutes of Health Research-Institute of Gender and Health. (2009). Institute of gender and health strategic plan 2009–2012. http://www.cihr-irsc.gc.ca/e/38770.html Canadian Institutes of Health Research-Institute of Gender and Health. (2017). Shaping science for a healthier world. http://www.cihr-irsc.gc.ca/e/48633.html Canadian Institutes of Health Research-Institute of Gender and Health. (2018). Science is better with sex and gender: Strategic plan, 2018–2023. https://cihr-irsc.gc.ca/e/documents/igh_strategic_plan_2018-2023-e.pdf Choo, H. Y., & Ferree, M. M. (2010). Practicing intersectionality in sociological research: A critical analysis of inclusions, interactions, and institutions in the study of inequalities. Sociological Theory, 28(2), 129–149. https://doi.org/10.1111/j.1467-9558.2010.01370.x Collins, P. H. (1990). Black feminist thought: Knowledge, consciousness, and the politics of empowerment (1st ed.). Routledge. Collins P. H. (2000). Black feminist thought: Knowledge, consciousness and the politics of empowerment (2nd ed.). Routledge. Corna, L. M. (2013). A life course perspective on socioeconomic inequalities in health: A critical review of conceptual frameworks. Advances in Life Course Research, 18(2), 150–159. http://linkinghub.elsevier.com /retrieve/pii/S1040260813000038. https://doi.org/10.1016/j.alcr.2013.01.002

Overhauling Life Course Approaches to Women’s Health Correa-de-Araujo, R. (2004). A wake-up call to advance women’s health. Women’s Health Issues, 14(2), 31–34. https://doi.org/10.1016/j.whi.2004.03.005 Couto, M. T., Oliveira, E. D., Separavich, M. A. A., & Luiz, O. D. C. (2019). The feminist perspective of intersectionality in the field of public health: a narrative review of the theoretical-methodological literature. Salud Colectiva, 15, e1994. https://doi.org/10.18294/sc.2019.1994 Dhamoon, R. K. (2011). Considerations on mainstreaming intersectionality. Political Research Quarterly,  64(1), 230–243. https://doi.org/10.1177/1065912910379227 Dhamoon, R. K., & Hankivsky, O. (2011). Why the theory and practice of intersectionality matter to health research and policy. In O. Hankivsky (Ed.), Health inequities in Canada: Intersectional frameworks and practices (pp. 16–50). University of British Columbia Press. Douglas, J., & Watson, N. (2013). Resistance, resilience and renewal: The health and well-being of black women in the Atlantic Diaspora – Developing an intersectional approach. Critical Public Health, 23(1), 1–5. https://doi.org/10.1080/09581596.2013.760724 Dressel, P., Minkler, M., & Yen I. (1997) Gender, race, class, and aging: Advances and opportunities. International Journal of Health Services, 27(4), 579–600. https://doi. org/10.2190/7XAY-PYBN-AA5L-3DRC Elder, G. H. (1974). Children of the great depression: Social change in life experiences. University of Chicago Press. Elder, G. H., Johnson, M. K., & Crosnoe, R. (2003). The emergence and development of life course theory. In M. J. Shanahan, J. T. Mortimer, & M. Kirkpatrick-Johnson (Eds.), Handbook of the life course  (pp. 3–19). Springer. Elder, G. H., & O’Rand, A. (1995). Adult lives in a changing society. In K. S. Cook, G. A. Fine, & J. S. House (Eds.), Sociological perspectives on social psychology (pp. 452–475). Allyn and Bacon. Etherington, N. (2015). Race, gender, and the resources that matter: An investigation of intersectionality and health. Women & Health 55(7), 754–777. http://www.tandfonline.com/doi/full/10.1080/03630242 .2015.1050544. https://doi.org/10.1080/03630242.2015.1050544 Etherington, N. (2016a). Gender and health over the life course: Temporal, contextual, and intersectional considerations [Doctoral dissertation, University of Western Ontario]. Electronic Thesis and Dissertation Repository. http://ir.lib.uwo.ca/etd/3750 Etherington, N. (2016b). Re-evaluating gender differences in self-rated health: The importance of cohort. Journal of Women & Aging. Advance online publication. https://doi.org/10.1080/08952841.2016. 1108737 Etherington, N., & Baker, L. (2018). From “buzzword” to best practice: Applying intersectionality to children exposed to intimate partner violence. Trauma, Violence, & Abuse, 19(1), 58–75. https://doi.org /10.1177/1524838016631128 Every Women Every Child. (2015). The global strategy for women’s, children’s and adolescents’ health (2016–2030). http://www.who.int/pmnch/media/events/2015/gs_2016_30.pdf Fausto-Sterling, A. (2000) Sexing the body: Gender politics and the construction of sexuality. Basic Books. Fausto-Sterling, A. (2005). The bare bones of sex: Part 1 – Sex and gender. Signs: Journal of Women in Culture and Society, 30(2), 1491–1527. https://doi.org/10.1086/424932 Fausto-Sterling, A. (2012). The dynamic development of gender variability. Journal of Homosexuality, 59(3), 398–421. https://doi.org/10.1080/00918369.2012.653310 Ferraro, K. F., & Shippe, T. P. (2009). Aging and cumulative inequality: How does inequality get under the skin? The Gerontologist, 49(3), 333–343. https://doi.org/10.1093/geront/gnp034 Ferrer, I., Grenier, A., Brotman, S., & Koehn, S. (2017). Understanding the experiences of racialized older people through an intersectional life course perspective. Journal of Aging Studies, 41, 10–17. https://doi.org /10.1016/j.jaging.2017.02.001 Fussell, E., Gauthier, A. H., & Evans, A. (2007). Heterogeneity in the transition to adulthood: The cases of Australia, Canada, and the United States. European Journal of Population/Revue européenne de démographie, 23(3–4), 389–414. https://doi.org/10.1007/s10680-007-9136-4

53

54

Olena Hankivsky and Cole Etherington Gee, G. C., Walsemann, K. M., & Brondolo, E. (2012). A life course perspective on how racism may be related to health inequities. American Journal of Public Health, 102(5), 967–974. https://doi.org/10.2105 /AJPH.2012.300666 George, L. K. (1993). Sociological perspectives on life transitions. Annual Review of Sociology, 19(1), 353–373. Giesbrecht, M., Wolse, F., Crooks, V. A., & Stajduhar, K. (2015). Identifying socio-environmental factors that facilitate resilience among Canadian palliative family caregivers: a qualitative case study. Palliative & Supportive Care, 13(3), 555–565. https://doi.org/10.1017/S1478951513001028 Government of Canada. (1999). Women’s health strategy. https://www.canada.ca/en/health-canada/corporate /about-health-canada/reports-publications/women-health-strategy.html Hagestad, G. O., & Dykstra, P. (2016). Structuration of the life course: Some neglected aspects. In M. J. Shanahan., J. T. Mortimer., & M. K. Johnson (Eds.), Handbook of the life course (pp. 131–157). Springer. Halfon, N., Larson, K., Lu, M., Tullis, E., & Russ, S. (2014). Lifecourse health development: past, present and future. Maternal and Child Health Journal, 18(2), 344–365. https://doi.org/10.1007/s10995-013 -1346-2 Hankivsky, O. (2007). More than age and biology: Overhauling lifespan approaches to women’s health. In M. Morrow, O. Hankivsky, & C. Varcoe (Eds.), Women’s health in Canada: Critical perspectives on theory and policy (pp. 64–93). University of Toronto Press. Hankivsky, O. (2012). Women’s health, men’s health, and gender and health: Implications of intersectionality. Social Science and Medicine, 74(11), 1712–20. https://doi.org/10.1016/j.socscimed.2011.11.029 Hankivsky, O. (2014). Intersectionality 101. Institute for Intersectionality Research & Policy, SFU. http:// vawforum-cwr.ca/sites/default/files/attachments/intersectionallity_101.pdf Hankivsky, O., Cormier, R., & De Merich, D. (2009). Intersectionality: Moving women’s health research and policy forward. Women’s Health Research Network. Hankivsky, O., Doyal, L., Einstein, G., Kelly, U., Shim, J., Weber, L., & Repta, R. (2017). The odd couple: Using biomedical and intersectional approaches to address health inequities. Global Health Action, 10(Suppl 2), Article 1326686. http://www.ncbi.nlm.nih.gov/pubmed/28641056 Hankivsky, O., & Grace, D. (2016). Understanding and emphasizing difference and intersectionality in multimethod and mixed methods research. In S. N. Hesse-Biber, & R. B. Johnson (Eds.), The Oxford handbook of multimethod and mixed methods research inquiry, (pp. 110–128). Oxford University Press. 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(1), 5. https://doi.org/10.1186/1475-9276-9-5 Hardy, R., Potischman, N., & Kuh, D. (2013). Life course approach to research in women’s health. In M. Goldman, R. Troisi, & K. Rexrode (Eds.), Women and health (pp. 119–129). Academic Press. Harnois, C. E. (2015). Age and gender discrimination: Intersecting inequalities across the lifecourse. In V. Demos & M. T. Seglar (Eds.), At the center: Feminism, social science and knowledge (pp. 85–109). Emerald Group. Health Canada & Canadian Institute for Health Information. (2003). Women’s health surveillance report: A multi-dimensional look at the health of Canadian women. https://secure.cihi.ca/free_products/CPHI _WomensHealth_e.pdf Hesse-Biber, S. (2013). Feminist research practice: A primer (2nd ed.). Sage Publications. Hogan, V. K., de Araujo, E. M., Caldwell, K. L., Gonzalez-Nahm, S. N., & Black, K. Z. (2018). “We black women have to kill a lion everyday”: An intersectional analysis of racism and social determinants of health in Brazil. Social Science & Medicine, 199, 96–105. https://doi.org/10.1016/j.socscimed.2017 .07.008 Holman, D., & Walker, A. (2020). Understanding unequal ageing: towards a synthesis of intersectionality and life course analyses. European Journal of Ageing, 18(2), 1–17. Advance online publication. https://doi .org/10.1007/s10433-020-00582-7

Overhauling Life Course Approaches to Women’s Health Hopkins, P., & Pain, R. (2007). Geographies of age: Thinking relationally. Area, 39(3), 287–294. https://doi .org/10.1111/j.1475-4762.2007.00750.x Hulko, W. (2016). LGBT individuals and dementia: An intersectional approach. In S. Westwood & L. Price (Eds.), Lesbian, gay, bisexual and trans* individuals living with dementia: Concepts, practice, rights (pp. 35–51). Routledge. Hunting, G. (2014). Intersectionality-informed qualitative research: A primer. Criminology, 4(1), 32–56. https://studylib.net/doc/10714283/intersectionality-informed-qualitative-research--a-primer Hunting, G., Grace, D., & Hankivsky, O. (2015). Taking action on stigma and discrimination: An intersectionality-informed model of social inclusion and exclusion. Intersectionalities: A Global Journal of Social Work Analysis, Research, Polity, and Practice, 4(2), 101–125. https://journals.library.mun.ca/ojs/index .php/IJ/article/download/916/1240 Institute for Intersectionality Research and Policy. (2013). An intersectionality based policy analysis of Taking Action on Stigma and Social Inclusion in British Columbia. Simon Fraser University. Johnson, J., Repta, R., & Kalyan, S. (2012). Implications of sex and gender for health research: from concepts to study design. Designing and Conducting Gender, Sex & Health Research, 39, 64. https://doi.org /10.4135/9781452230610.n3 Johnstone, K. (2001, February). A life cycle approach to women’s health data collection: Development and application [Conference presentation]. 4th Australian Women’s Health Conference, Australia. Kapilashrami, A., Bisht, R., & Ravindran, S. (2016). Feminist movements and gender politics: Transnational perspectives on intersectionality. The Delhi University Journal of the Humanities and the Social Sciences, 3, 171–184. http://journals.du.ac.in/humsoc/pdf/Kapilashrami_etal_Final_11.pdf Kattari, S. K., Lavery, A., & Hasche, L. (2017). Applying a social model of disability across the life span. Journal of Human Behavior in the Social Environment 27(8), 865–880. https://www.tandfonline.com/doi /full/10.1080/10911359.2017.1344175. https://doi.org/10.1080/10911359.2017.1344175 Kendig, H., & Nazroo, J. (2016). Life course influences on inequalities in later life: Comparative perspectives. Journal of Population Ageing, 9(1-2), 1–7. https://doi.org/10.1007/s12062-015-9138-7 Kertzer, D. (1991). Household and gender in a life-course perspective. In E. Masini & S. Stratigos (Eds.), Women, households and change (pp. 18–29). United Nations University Press. Krekula, C. (2007). The intersection of age and gender: Reworking gender theory and social gerontology. Current Sociology, 55(2), 155–171. https://doi.org/10.1177/0011392107073299 Krieger, N. (1994). Epidemiology and the web of causation: has anyone seen the spider? Social Science & Medicine, 39(7), 887–903. https://doi.org/10.1016/0277-9536(94)90202-X Likis, F. E. (2016). Women’s health across the lifespan: A continuing education theme issue. Journal of Midwifery & Women’s Health, 61(3), 304–305. https://doi.org/10.1111/jmwh.12495 Macintyre, S., Hunt, K., & Sweeting, H. (1996). Gender differences in health: Are things really as simple as they seem? Social Science & Medicine, 42(4), 617–624. https://doi.org/10.1016/0277-9536(95)00335-5 McDonough, P., & Walters, V. (2001). Gender and health: Reassessing patterns and explanations. Social Science and Medicine, 52(4), 547–559. https://doi.org/10.1016/S0277-9536(00)00159-3 McGibbon, E., & McPherson, C. (2011). Applying intersectionality & complexity theory to address the social determinants of women’s health. Women’s Health & Urban Life, 10(1), 59–86. https://tspace.library .utoronto.ca/bitstream/1807/27217/1/10.1_mcgibbon_mcpherson.pdf Meleis, A. I., Caglia, J., & Langer, A. (2016). Women and health: Women’s dual roles as both recipients and providers of healthcare. Journal of Women’s Health, 25(4), 329–331. https://doi.org/10.1089/jwh.2015.5717 National Institutes of Health. (2019). Advancing science for the health of women: The trans-NIH strategic plan for women's health research, 2019–2023. https://orwh.od.nih.gov/sites/orwh/files/docs/ORWH _Strategic_Plan_2019_508C_0.pdf Nicolau, B., & Marcenes, W. (2012). How will a life course framework be used to tackle wider social determinants of health? Community Dentistry and Oral Epidemiology, 40, 33–38. https://doi.org/10.1111 /j.1600-0528.2012.00717.x Office of Research on Women’s Health. (2004). FY 2004 NIH research priorities for women’s health.

55

56

Olena Hankivsky and Cole Etherington O’Rand, A. M. (2006). Stratification and the life course: Life course capital, life course risks, and social inequality. In R. H. Binstickk, L. K. George, S. J. Cutler, J. Hendricks, & J. H. Schulz (Eds.), Handbook of aging and the social sciences (6th ed., pp. 146–158). Elsevier. Pinn, V. W. (2003). Sex and gender factors in medical studies. Journal of the American Medical Association, 289(4), 397–400. https://doi.org/10.1001/jama.289.4.397 Raphael, D., & Bryant, T. (2015). Power, intersectionality and the life-course: Identifying the political and economic structures of welfare states that support or threaten health. Social Theory & Health 13(3–4), 245–266. http://link.springer.com/10.1057/sth.2015.18. https://doi.org/10.1057/sth.2015.18 Reading, J. (2009). A life course approach to the social determinants of health for Aboriginal peoples. Senate of Canada. https://sencanada.ca/content/sen/Committee/402/popu/rep/appendixAjun09-e.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. http://lfs-ubcfarm.sites.olt.ubc. ca/files/2018/02/Reading-C.L.-Wien-F.-2009.pdf. Requejo, J. H., & Bustreo, F. (2016). Putting maternal health in perspective with a life course approach to women’s health. Journal of Women’s Health, 25(3), 211–212. https://doi.org/10.1089/jwh.2016.5783 Richardson, L. J., & Brown, T. H. (2016). (En)gendering racial disparities in health trajectories: A life course and intersectional analysis. SSM-Population Health, 2, 425–435. https://doi.org/10.1016/j.ssmph.2016 .04.011 Rossi, A. S. (Ed.). (1985). Gender and the life course. Aldine. Settersten Jr, R. A., & Hagestad, G. O. (2015). Subjective aging and new complexities of the life course. In M. Diehl., & H. Wahl (Eds.), Annual review of gerontology and geriatrics: Vol. 35. Subjective ageing: New developments and future directions (pp. 29–53). Springer. Shuey, K. M., & Willson, A. E. (2017). Trajectories of work disability and economic insecurity approaching retirement. The Journals of Gerontology: Series B. https://doi.org/10.1093/geronb/gbx096 Smith, G. D. (2003). Health inequalities: Lifecourse approaches. The Policy Press. 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 Steel, A., Frawley, J., Dobson, A., Jackson, C., Lucke, J., Tooth, L., Brown, W., Byle, J., & Mishra, G. (2013). Women’s health in NSW – A life course approach: A rapid review. https://www.researchgate.net/profile /Jane_Frawley/publication/256129001_Women’s_health_in_NSW_-_a_life_course_approach_a_rapid _review/links/02e7e521dd3a916f6c000000.pdf Taylor, G. (2015). Why health programming and policy must respond to the reality of women’s lives. http:// healthpartners-int.co.uk/why-health-programming-and-policy-must-respond-to-the-reality-of-womens-lives/ Temmerman, M., Khosla, R., Laski, L., Mathews, Z., & Say, L. (2015). Women’s health priorities and interventions. British Medical Journal, 351, h4147. https://doi.org/10.1136/bmj.h4147 Tobiasz-Adamczyk, B., Galas, A., Zawisza, K., Chatterji, S., Haro, J. M., Ayuso-Mateos, J. L., Koskinen, S., Leonardi, M. (2017). Gender-related differences in the multi-pathway effect of social determinants on quality of life in older age-the COURAGE in Europe project. Quality of Life Research, 26(7), 1865–1878. https://doi.org/10.1007/s11136-017-1530-8 United Nations. (1996). Platform for action. In Report of the Fourth World Conference on Women. United Nations. (2007). Women and health. https://www.un.org/womenwatch/daw/beijing/beijingat10/index.html United Nations. (2015). The world’s women 2015: Trends and statistics. Department of Economic and Social Affairs. https://unstats.un.org/unsd/gender/downloads/worldswomen2015_report.pdf United Nations General Assembly. (2016). Report of the working group on the issue of discrimination against women in law and in practice [Data file]. https://digitallibrary.un.org/record/1637427/files/A_HRC_38 _46-EN.pdf Versey, H. S. (2017). Caregiving and women’s health: Toward an intersectional approach. Women’s Health Issues, 27(2), 117–120. https://doi.org/10.1016/j.whi.2017.01.009

Overhauling Life Course Approaches to Women’s Health Walsemann, K. M., Goosby, B. J., & Farr, D. (2016). Life course SES and cardiovascular risk: Heterogeneity across race/ethnicity and gender. Social Science and Medicine, 152, 147–55. https://doi.org/10.1016 /j.socscimed.2016.01.038 Warner, D. F., & Brown, T. H. (2011). Understanding how race/ethnicity and gender define age-trajectories of disability: An intersectionality approach. Social Science & Medicine 72(8), 1236–1248. http://www .pubmedcentral.nih.gov/articlerender.fcgi?artid=3087305&tool=pmcentrez&rendertype=abstract. https:// doi.org/10.1016/j.socscimed.2011.02.034 Weber, L., & Messias, D. K. H. (2012). Mississippi front-line recovery work after Hurricane Katrina: An analysis of the intersections of gender, race, and class in advocacy, power relations, and health. Social Science and Medicine, 74(11), 1833–1841. https://doi.org/10.1016/j.socscimed.2011.08.034 Weber, L., & Parra-Medina, D. (2003). Intersectionality and women’s health: Charting a path to eliminating health disparities. In M. T. Segal, V. Demos, & J. J. Kronenfeld (Eds.), Gender perspectives on health and medicine (pp. 181–230). Emerald Group. World Health Organization. (2015). The Minsk Declaration: The life-course approach in the context of health 2020. WHO Regional Office for Europe. World Health Organization. (2016a). Strategy on women’s health and well-being in the WHO European Region. WHO Regional Office for Europe. World Health Organization. (2016b). Promoting health across the life course – Regional director annual report 2016. WHO Regional Office for the Eastern Mediterranean. http://www.emro.who.int/annual-report /2016/health-promotion.html Williams, D. R., Mohammed, S. A., & Shields, A. E. (2016). Understanding and effectively addressing breast cancer in African American women: Unpacking the social context. Cancer, 122(14), 2138–2149. https://doi.org/10.1002/cncr.29935 Wright, K. (2016). Intergenerational transfers over the life course: Addressing temporal and gendered complexities via a human well-being approach. Progress in Development Studies, 16(30), 278–288. https:// doi.org/10.1177/1464993416641582 Wyn, R., & Solis, B. (2001). Women’s health issues across the lifespan. Women’s Health Issues, 11 (3), 148–159. https://doi.org/10.1016/S1049-3867(01)00081-0

57

This page intentionally left blank 

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

62

Marina Morrow and Christabelle Sethna

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

Historical and Contemporary Reflections on the Women’s Health Movement

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

63

64

Marina Morrow and Christabelle Sethna

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

65

66

Marina Morrow and Christabelle Sethna

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

67

68

Marina Morrow and Christabelle Sethna

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

Historical and Contemporary Reflections on the Women’s Health Movement

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

69

70

Marina Morrow and Christabelle Sethna

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).

71

72

Marina Morrow and Christabelle Sethna

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,

73

74

Marina Morrow and Christabelle Sethna

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

Historical and Contemporary Reflections on the Women’s Health Movement

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

75

76

Marina Morrow and Christabelle Sethna

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

Historical and Contemporary Reflections on the Women’s Health Movement

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

77

78

Marina Morrow and Christabelle Sethna

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”

79

80

Marina Morrow and Christabelle Sethna

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

Historical and Contemporary Reflections on the Women’s Health Movement

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.

REFERENCES Abrahams, J. (2017, August 14). Everything you wanted to know about fourth-wave feminism but were afraid to ask. Prospect. https://www.prospectmagazine.co.uk/magazine/everything-wanted-know-fourth -wave-feminism Ackerman, K. R. (2012). “Not in the Atlantic Provinces”: The abortion debate in New Brunswick, 1980–1987.  Acadiensis, 75–101. Ackerman, K., & Stettner, S. (2019). “The public is not ready for this”: 1969 and the long road to abortion access. Historical Perspectives, 100(2), 239–256. Agger, E. (1976). Lesbians fight to keep kids. Body Politic, 29, 3–8. Agnoito, R. (Ed.). (1977). History of ideas on women. Pedigree Books. Ahmed, S. (2000). Strange encounters: Embodied others in postcoloniality. Routledge. Alaimo, S., & Heckman, S. (Eds.) (2008). Material feminisms. Indiana University Press. Alcoff, L. (2006). Visible identities, race, gender, and the self. Oxford University Press. Al Jishi, T., & Sergi, C. (2017). Current perspective of diethylstilbestrol (DES) exposure in mothers and offspring. Reproductive Toxicology, 71, 71–77. https://doi.org/10.1016/j.reprotox.2017.04.009 Anzaldua, G., & Moraga, C. (Eds.). (1981). This bridge called my back: Writings by radical women of colour. Kitchen Table Press. Armstrong, L. (1978). Kiss daddy goodnight: A speak-out on incest. Hawthorne Books. Armstrong, P. (1998). Women and health: Challenges and changes. In N. Mandell (Ed.), Feminist issues: Race, class and sexuality (2nd ed., pp. 249–263). Prentice Hall, Allyn and Bacon Canada.

81

82

Marina Morrow and Christabelle Sethna Armstrong, P., Amaratunga, C., Bernier, J., Grant, K., Pederson, A., & Wilson, K. (2002). Exposing privatization: Women and health care reform in Canada. Garamond Press. Armstrong, P., Boscoe, M., Clow, B., Grant, K., Pederson, A., Wilson, K., Hankivsky, O., Jackson, B., & Morrow, M. (2003). Reading Romanow: The implications of the final report of the Commission on the Future of Health Care in Canada for Women. National Coordinating Group on Health Care Reform and Women. Armstrong, P., Grant, K., Amaratunga, C., Boscoe, M., Pederson, A., & Wilson, K. (Eds.). (2004). Caring for/caring about women, home care and unpaid caregiving. Garamond Press. Aronson, J., & Neysmith, S. M. (1997). The retreat of the state and long-term care provision: Implications for frail elderly people, unpaid family carers and paid home care workers. Studies in Political Economy, 53(1), 37–66. https://doi.org/10.1080/19187033.1997.11675315 Austen, I., & Bilefsky, D. (2021, June 24). Hundreds more unmarked graves found at former residential school in Canada. New York Times. https://www.nytimes.com/2021/06/24/world/canada/indigenouschildren-graves-saskatchewan-canada.html Bacchi, C. (1983). Liberation deferred? The ideas of the English-Canadian suffragists, 1877 1918. University of Toronto Press. Backhouse, C. (1991). Petticoats and prejudice: Women and the law in nineteenth-century Canada. Women’s Press. Backhouse, C. (1994). Racial segregation in Canadian legal history: Viola Desmond’s challenge, Nova Scotia, 1946. Dalhousie Law Journal, 17(2), 299–362. Baele, S. J., Brace, L., & Coan, T. G. (2019). From “incel” to “saint”: Analyzing the violent worldview behind the 2018 Toronto attack. Terrorism and Political Violence, 1–25. https://doi.org/10.1080/09546553.2019 .1638256. Bailey, J., & Steeves, V. (2015). e GIRLS, eCITIZENS. University of Ottawa Press. Baillargeon, D. (1999). Praticiennes et patientes: Les femmes et la santé dans l’historiographie Québécoise. Revue d’histoire de l’Amérique française, 53(1), 47–59. https://doi.org/10.7202/005319ar Baillargeon, D. (2014). A brief history of women in Quebec (W. Donald Wilson, Trans.). Wilfred Laurier University. Baillargeon, D. (2019). To be equals in our own country: Women and the vote in Quebec (K. Roth, Trans.). UBC Press. Bannerji, H. (1987). Introducing racism: Notes towards an anti-racist feminism. In B. Crow & L. Gotell (Eds.), Open boundaries: A Canadian women’s studies reader, 2000 (pp. 26–32). Prentice Hall Allyn & Bacon. Bartky, S. L. (1993). The feminine body. In A. Jagger &. S. Rothenberg (Ed.), Feminist frameworksalternative theoretical accounts of the relations between women and men (pp. 454–461). McGraw Hill. Bashevkin, S. (1998). Women on the defensive. University of Chicago Press. Baylis, F., & Downie, J. (2013). The tale of assisted human reproduction Canada: A tragedy in five acts. Canadian Journal of Women and the Law, 25(2), 183–201. https://doi.org/10.3138/cjwl.25.2.183 Bégin, M. (1992). The Royal Commission on the Status of Women in Canada: Twenty years later. In C. Backhouse & D. H. Flaherty (Eds.), Challenging times: The women’s movement in Canada and the United States (pp. 21–38). McGill-Queen’s University Press. Benoit, C., Carroll, D., & Westfall, R. (2007). Women’s access to maternity services in Canada: Historical developments and contemporary challenges. In M. Morrow, O. Hankivsky, & C. Varcoe (Eds.), Women’s health in Canada: Critical perspectives on theory and policy (pp. 507–527). University of Toronto Press. Bernstein, J., Morton, P., Seese, L., & Wood, M. (1972). Sisters, brothers, lovers, listen. In Women unite! An anthology of the Canadian Women’s Movement (pp. 31–39). Canadian Women’s Educational Press. Biggs, C. L. (1983). The case of the missing midwives: A history of midwifery in Ontario from 1795–1900. Ontario History, 65(2), 21–35. Bindy, H., & Kang, K. (2016). Sex-selective abortion and the politics of race in multicultural Canada. In S. Stettner (Ed.), Without apology: Writings on abortion in Canada (pp. 289–305). Athabasca University Press. Biss, E. (2014). On immunity: An inoculation. Greywolf Press.

Historical and Contemporary Reflections on the Women’s Health Movement 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 Bland, L. (1983). Purity, motherhood, pleasure or threat? Definitions of female sexuality 1900-1970. In L. Bland (Ed.), Sex and love: New thoughts on old contradictions (pp. 8–29). Women’s Press. Boehnert, J. (1993). The psychology of women. In S. Burt, L. Code & L. Dorney (Eds.), Changing patterns: Women in Canada (pp. 452–487). McClelland & Stewart. Bogic, A. (2018). “The import problem”: The travels of our bodies, ourselves to eastern Europe. In C. Sethna & G. Davis (Eds.), Abortion across borders: Transnational travel and access to abortion services (pp. 252–277). Johns Hopkins University Press. Boni, T. (2017). Why is woman the other? In L. Hengehold & N. Bauer (Eds.), Companion to Simone de Beauvoir (pp. 174–184). John Wiley & Sons. Bordo, S. (1993). Unbearable weight: Feminism, western culture and the body. University of California Press. Bornstein, Kate (1994). Gender outlaw: On men, women, and the rest of us. Routledge. Boscoe, M. (1994). The strength of links: Building the Canadian Women’s Health Network – Report on the Canadian-Wide Consultation Meeting Held in Winnipeg, Manitoba May 21-24, 1993. Canadian Women’s Health Network. Boscoe, M., Basen, G., Alleyne, G., Bourrier-Lacroix, B., & White, S. (2005). The women’s health movement in Canada: Looking back and moving forward. Canadian Woman Studies Journal, 24(1), 7–13. http://www.cwhn.ca/sites/default/files/resources/cwhn/cwhn-cws04.pdf Bourassa, C., McKay-McNabb, K., & Hampton, M. (2004). Racism, sexism and colonialism: The impact on the health of Aboriginal women in Canada. Canadian Woman Studies, 24(1), 23–29. https://cws.journals .yorku.ca/index.php/cws/article/download/6172/5360 Bourne, P. (1993). Women, law and the justice system. In R. Roach Pierson, M. Griffin, Cohen, P. Bourne, & P. Masters (Eds.), Canadian women’s issues: Volume one: Strong voices 25 years of women’s activism in English Canada (pp. 321–348). James Lorimer and Company. Brandt, G. C., Black, N., Bourne, P., & Fahrni, M. (2011). Canadian women: A history (3rd ed.). Nelson Education. Bridgen-Lennie, L. (2018). Women and children first: The role of Black women and children in southwestern Ontario’s temperance movement, 1840–1899. In N. Reid-Maroney, B. E. de B’béri, & W. T. Bernard (Eds.), Women in the “promised land”: Essays in African Canadian history (pp. 75–97). Women’s Press. Brier, J. (2007). Locating lesbian and feminist responses to AIDS, 1982–1984. Women’s Studies Quarterly, 35(1/2), 234–248. Briggs, L. (2000). The race of hysteria: “Overcivilization” and the “savage” woman in late nineteenth-century obstetrics and gynecology. American Quarterly, 52(2), 246–273. Bristow, P., Brand, D., Carty, L., Cooper, A., Hamilton, S., & Shadd, A. (1994). “We’re rooted here and they can’t pull us up:” Essays in African Canadian women’s history. University of Toronto Press. Brodie, J., & Bakker, I. (Eds.). (2008). Postscript: The Harper government and the end of equity. Where are the women? Gender equity, budgets and Canadian public policy (pp. 113–120). Canadian Centre for Policy Alternatives. Brodie, J. M., Gavigan, S. A., & Jenson, J. (1992). The politics of abortion. Oxford University Press. Brownmiller, S. (1975). Against our will: Men, women, and rape. Simon & Schuster. Buettgen, A., Hardie, S., & Wicklund., E., Jean-François, K. M., & Alimi, S. (2018). Understanding the intersectional forms of discrimination impacting persons with disabilities. Government of Canada’s Social Development Partnerships Program – Disability Component. Canadian Centre on Disability Studies. Burnett, K. (2014). “The rattlesnake and the otter: Anthropology, gender, and contraception among the Niitsitapi (Blackfoot) in the 1930s. In E. Gemi-Iordanou, S. Gordon, R. Matthew, E. McInnes, & R. Pettitt (Eds.), Medicine, healing and performance (pp. 106–119). Oxbow Books.

83

84

Marina Morrow and Christabelle Sethna Burstow, B. (1992). Radical feminist therapy: Working in the context of violence. Sage. Burt, S., & Mitchell, C. (1998). What’s in a name? From sheltering women to protecting communities. In L. Pal (Ed.), How Ottawa spends 1998–99 balancing act: The post-deficit mandate (pp. 271–291). Oxford University Press. Butler, J. (1999). Gender trouble: Feminism and the subversion of identity. Routledge. Butler, J. (2004). Undoing gender. Routledge. Cade, T. (Ed.). (1970). The Black woman: An anthology. New American Library. Calliste, A. (1993). Women of exceptional merit: Immigration of Caribbean nurses to Canada. Canadian Journal of Women and the Law, 6(1), 85–102. Campbell, D. A. (1992). The evolution of sexual harassment case law in Canada. Queen’s University Industrial Relations Centre. Campbell, L. (2020). A great revolutionary wave: Women and the vote in British Columbia. UBC Press. Canadian Advisory Council on the Status of Women. (1994). What women prescribe: Report and recommendations from the national symposium “Women in partnership: Working towards inclusive, gendersensitive health policies.” Canadian HIV/AIDS Legal Network. (2017). Indigenous women, HIV and gender-based violence. Canadian HIV/AIDS Legal Network. Canadian Women’s Health Network. (2007). HPV, vaccines, and gender: Policy considerations. http://www .cwhn.ca/sites/default/files/PDF/CWHN_HPVjuly30.pdf Caplan, P. (1985) The myth of women’s masochism. University of Toronto Press. Catherine White Holman Wellness Centre. (2019). Providing low-barrier wellness services trans and gender diverse people. https://cwhwc.com Cavanagh, S. L. (2010). Queering bathrooms: Gender, sexuality, and the hygienic imagination. University of Toronto Press. Chakraborty, M. N. (2004) Wa(i)ving it all away: Producing subject and knowledge in feminisms of colour. In S. Gillis, G. Howie, & R. Munford (Eds.), Third-wave feminism: A critical exploration (pp. 205–215). Palgrave MacMillan. Chamberlain, P. (2017). The feminist fourth wave: Affective temporality. Palgrave Macmillan. Chenoweth, L. (1996). Violence and women with disabilities: Silence and paradox. Violence against women, 2(4), 391–411. https://doi.org/10.1177/1077801296002004004 Cherneski, J. (2020). Evidence-loving rockstar chief medical officers: Female leadership amidst COVID-19 in Canada. Gender, Work and Organization, 1-28. https://doi.org/10.1111/gwao.12494. Chesler, P. (1972). Women and madness. Avon Books. Chisholm, C. (2016). The curious case of thalidomide and the absent eugenic clause in Canada’s amended abortion law of 1969. Canadian Bulletin of Medical History, 33(2), 493–516. https://doi.org/10.3138 /cbmh.33.2.162-26062015 Chouinard, V. (1999). Body politics: Disabled women’s activism in Canada and beyond. In R. Butler & H. Parr (Eds.), Mind and body spaces: Geographies of illness, impairment and disability (pp. 269–294). Routledge. Chow, R. (2006). The age of the world target: Self-referentiality in war, theory, and comparative work. Duke University Press. Ciliska, D., & Rice, C. (1989). Body image/body politics. Healthsharing, 10, 3–13. Clark, L., & Lewis, D. (1977). Rape: The price of coercive sexuality. Women’s Press. Cleary, K. (2016). Feminist theories of the body. In N. Naples (Ed.), The Wiley Blackwell encyclopedia of gender and sexuality studies (1st ed., pp. 1–6). Wiley Blackwell. Cleverdon, C. L. (1974). The woman suffrage movement in Canada. University of Toronto Press. Cohen, M. G. (1993). The Canadian women’s movement. In R. R. Pierson, M. G. Cohen, P. Bourne, & P. Masters (Eds.), Canadian women’s voices: Volume I: Strong voices: Twenty-five years of women’s activism in English Canada (pp. 1–31). James Lorimer Press.

Historical and Contemporary Reflections on the Women’s Health Movement Cohen, M. G., & Cohen, M. (2004). A return to wage discrimination: Pay equity losses through the privatization of health care. Canadian Centre for Policy Alternatives, BC Office. Cole, S. (1993). Pornography and the sex crisis. Second Story Press. Cole, D. (2020). The skin we’re in: A year of Black resistance and power. Canada: Doubleday Canada. Combahee River Collective. (1977). The Combahee River Collective statement. https://www.blackpast.org /african-american-history/combahee-river-collective-statement-1977/ Comacchio, C. (1993). Nations are built of babies: Saving Ontario’s mothers and children, 1900–1940. McGillQueen’s University Press. Commission on the Future of Health Care in Canada. (2002). Building on values: The future of health care in Canada. https://publications.gc.ca/collections/Collection/CP32-85-2002E.pdf Connell, J. (2006). Medical tourism: Sea, sun, sand and… surgery. Tourism management, 27(6), 1093–1100. https://doi.org/10.1016/j.tourman.2005.11.005 Cook, S. A. (1995). Through sunshine and shadow: The woman’s Christian temperance union, evangelicalism, and reform in Ontario, 1874–1930. McGill-Queen’s University Press. Cook, K. (2007). Environmental Justice: Woman is the First Environment. In Reproductive justice briefing book: A primer on reproductive justice and social change. http://www.september28.org/reproductive-justice -briefing-book-a-primer-on-reproductive-justice-and-social-change/ Cooper, A. (2005). The hanging of Angelique. HarperCollins Canada. Cope, A., & Darke, J. (2002). Trans inclusion manual for women’s organizing: A report for the trans/women dialogue planning committee and the trans alliance project. Trans/Women Dialogue Planning Committee and the Trans Alliance Project. Cossman, B., Bell, S., Gotell, L., & Ross, B. (1997). Bad attitude/s on trial: Pornography, feminism, and the Butler decision. University of Toronto Press. Coulling, R., & Johnston, M. S. (2018). The criminal justice system on trial: Shaming, outrage, and gendered tensions in public responses to the Jian Ghomeshi verdict. Crime, Media, Culture, 14(2), 311–331. https:// doi.org/10.1177/1741659017715059 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 Danica, E. (1988). Don’t: A Woman’s Word. Gynergy Books. Davis, A. (1981). Women, race and class (2nd ed.). Random House. Davis, K. (2007). The making of our bodies, ourselves: How feminist knowledge travels across borders. Duke University Press. de Beauvoir, S. (1952). The second sex. Bantam Books. Deckha, M. (2015). Situating Canada’s Commercial surrogacy ban in a transnational context: A postcolonial feminist call for legalization and public funding. McGill Law Journal/Revue de droit de McGill, 61(1), 31–86. https://doi.org/10.7202/1035385ar Deibert-Turner, S. (2013). The golden speculum: A history of the Vancouver Women’s Health Collective, 1970–1983 [Master’s thesis, Simon Fraser University]. Summit Institutional Repository. https://summit.sfu.ca/item/13699 Deonandan, R., & Rahman, T. (2011). Implications and reflections on the 2010 Supreme Court ruling on Canada’s AHR Act. International Journal of Women’s Health, 3, 405–408. https://doi.org/10.2147/IJWH .S27145 Desmarais, L. (1999). Mémoires du̕ne bataille inachevée: la lutte pour la̕vortement au Québec, 1970-1992 (Vol. 35). Éditions Trait d’Union. Dijkstra, S. (1980). Simone de Beauvoir and Betty Friedan: The politics of omission. Feminist Studies, 6(2), 290–303. https://doi.org/10.2307/3177743 Dinnerstein, D. (1975). The mermaid and the minotaur: Sexual arrangements and human malaise. Harper and Row. DisAbled Women’s Network. (1988). DAWN Toronto fact sheet on reproductive rights. In R. Roach Pierson, M. G. Cohen, P. Bourne, & P. Masters, (Eds.), Canadian women’s issues: Volume I: Strong voices twenty-five years of women’s activism in English Canada (pp. 131–132). James Lorimer & Company.

85

86

Marina Morrow and Christabelle Sethna DisAbled Women’s Network. (2013). Factsheet: Women with disabilities and violence. Dobbin, M. (2010, February 8). Harper’s attack on women’s rights and equality: Remember all he’s done to thwart hard-won progress. The Tyee. https://thetyee.ca/Opinion/2010/02/08/HarperWomensRights/ Dodd, D. (1983). The Canadian birth control movement on trial, 1936-1937. Histoire sociale/Social History, 16(32), 411–428. Dodd, D., & Gorham, D. (Eds.). (1994). Caring and curing: Historical perspectives on women and healing in Canada. University of Ottawa Press. Doe, J. (2004). The story of Jane Doe: A book about rape. Vintage Canada. Doucette, J. (1991). The DisAbled Women’s Network: A fragile success. In J. Wine & J. Ristock (Eds.), Women and social change: Feminist activism in Canada (pp. 221–236). James Lorimer & Company. Dowbiggin, I. R. (1997). Keeping America sane: Psychiatry and eugenics in the United States and Canada, 1880–1940. Cornell University Press. Drees, L. M. (2013). Healing histories: Stories from Canada’s Indian hospitals. University of Alberta Press. Driedger, D. (1989). The last civil rights movement: Disabled Peoples’ International. Hurst & Company. Dua, E., FitzGerald, M., Gardner, L., Taylor, D., & Wyndels, L. (Eds.). (1994). On women healthsharing. Women’s Press. Dua, E., & Robertson, A. (Eds.). (1999). Scratching the surface: Canadian anti-racist feminist thought. Women’s Press. Duarte, M. E. (2017). Connected activism: Indigenous uses of social media for shaping political change. Australasian Journal of Information Systems, 21, 1525. https://doi.org/10.3127/ajis.v21i0.1525 Dubinsky, K. (1985). Lament for a “patriarchy lost.” Anti-feminism, Anti-abortion and REAL Women in Canada. Feminist Perspectives; Canadian Research Institute for the Advancement of Women. Dubois, E. C., & Gordon, L. (1983). Seeking ecstasy on the battlefield: Danger and pleasure in 19th century feminist sexual thought. Feminist Studies, 9(1), 7–25. https://doi.org/10.2307/3177680 Dudley-Shotwell, H. (2020). Revolutionizing women’s healthcare: The feminist self-help movement in America. Rutgers University Press. Duffin, J. (2010). The social history of medicine: A scandalously short introduction. University of Toronto Press. Dumont, M. (2012). Feminism à la Québécoise (N. Kennedy, Trans). Feminist HistorySociety. Dummitt, C., & Sethna, C. (Eds.). (2020). No place for the state: The origins and legacies of the 1969 Omnibus Bill. UBC Press. Dunphy, C. (1996). Morgentaler: A difficult hero: A biography. Random House Canada. Durst, D., & Bluechardt, M. (2004). Aboriginal people with disabilities: A vacuum in public policy. The Saskatchewan Institute of Public Policy, 6. Dyck, E. (2013). Facing eugenics: Reproduction, sterilization, and the politics of choice. University of Toronto Press. Dyck, E., & Lux, M. (2016). Population control in the “global North?” Canada’s response to Indigenous reproductive rights and neo-eugenics. Canadian Historical Review, 97(4), 481–512. https://doi.org /10.3138/chr.Dyck Dyck, E., & Lux, M. (2020). Challenging choices: Canada’s population control in the 1970s. McGill-Queen’s University Press. Egan, C., & Gardner, L. (1994). Race, class and reproductive freedom: Women must have real choices! Canadian Woman Studies, 14(2). Ehrenreich, B., & English, D. (1978). For her own good: 150 years of expert’s advice to women. Anchor Press; Doubleday. Ending Violence Association of Canada. (2017, November 19). How can you be more than a bystander. https://endingviolencecanada.org/program/be-more-than-a-bystander/ Erickson-Schroth, L. (Ed.). (2014). Trans bodies, trans selves: A resource for the transgender community. Oxford University Press. Errington, J. (1993). Pioneers and suffragists. In S. Burt, L. Code & L. Dorney (Eds.), Changing patterns: Women in Canada (2nd ed., pp. 59–91). McClelland & Stewart.

Historical and Contemporary Reflections on the Women’s Health Movement Erevelles, N., & Minear, A. (2010). Unspeakable offenses: Untangling race and disability in discourses of intersectionality. Journal of Literary and Cultural Disability Studies, 127–146. Fainman, J., & Penner, R. (2011). They shoot doctors, don’t they? A memoir. Great Plains Publications. Faludi, S. (2010). American electra. Harper’s Magazine. http://susanfaludi.com/americanelectra.pdf Farha, L., & Schwan, K. (2020). The front line defence: Housing and human rights in the time of COVID-19. In C. M. Flood, V. MacDonnell, J. Philpott, S. Thériault, & S. Venkatapuram (Eds.), Vulnerable: The law, policy and ethics of COVID-19 (pp. 355–366). University of Ottawa Press. Fausto-Sterling, A. (1994). Gender, race, and nation: The comparative anatomy of “Hottentot” women in Europe, 1815–1817. In J. Terry & J. Urla (Eds.), Deviant bodies: Critical perspectives on difference in science and popular culture. Indiana University Press. Fausto-Sterling, A. (2000). The five sexes: Why male and female are not enough. The Sciences, 33(2), 20–25. https://doi.org/10.1002/j.2326-1951.1993.tb03081.x Findlay, D. A., & Miller, D. L. (2002). Through medical eyes: The medicalization of women’s bodies and lives. In B. S. Bolaria & H. D. Dickinson (Eds.), Health, illness and health care in Canada (3rd ed., pp. 185–210). Nelson. Firestone, S. (1970). The dialectic of sex: The case for the feminist revolution. Williams & Morrow. Flood, C., MacDonnell, V., Philpott, J., Thériault, S., Venkatapuram, S. (Eds.). (2020). Vulnerable: The law, policy and ethics of COVID-19. University of Ottawa Press. Flynn, K. (2004). Experience and identity: Black immigrant nurses to Canada, 1950–1980. In M. Epp, F. Iacovetta & F. Swyripa (Eds.), Sisters or strangers? Immigrant, ethnic and racialize women in Canadian history (2nd ed., pp. 381–398). University of Toronto Press. Ford, A. R. (1990). Working together for women’s health: a framework for the development of policies and programs. Federal/Provincial/Territorial Working Group on Womenís Health. Ford, A. R. (2016). The healthsharing connection. Canadian Women’s Health Network. http://www.cwhn.ca /en/node/46098 Forestell, N. (2005). Mrs. Canada goes global: Canadian first-wave feminism revisited. Atlantis, 30(1), 1–20. https://journals.msvu.ca/index.php/atlantis/article/view/855/848 Forestell, N. (2019). Historical feminisms in Canada to 1940: Further reflections on the so-called first wave. In N. Janovicek & C. J. Nielson (Eds.), Reading Canadian women’s and gender history (pp. 171–202). University of Toronto Press. Fournier, C., & Oakley, R. (2018). Conversions and erasures: Colonial ontologies in Canadian and international traditional, complementary, and alternative medicine integration policies. In C. Brosnan, P. Vuolanto, & J. A. Brodin Danell (Eds.). Complementary and alternative medicine: Knowledge production and social transformation (pp. 217–245). Palgrave Macmillan. Frager, R. (1992). Class, ethnicity, and gender in the eaton strikes of 1912 and 1934. In F. Iacovetta & M. Valverde (Eds.), Gender conflicts: New essays in women’s history (pp. 189–228). University of Toronto Press. Fraser, S. (1989). My father’s house: A memoir of incest and of healing. Harper & Row. Freeman, B. M. (2001). The satellite sex: The media and women’s issues in English Canada, 1966–1971. Wilfred Laurier University Press. Friedan, B. (1963). The feminine mystique. Norton. Furi, M., & Wherrett, J. (2003) Indian status and band membership issues: Background paper. Library of Parliament. Garland-Thomson, R. (1997). Extraordinary bodies: Figuring physical disability in American culture and literature. Columbia University Press. Garland-Thomson, R. (2002). Integrating disability, transforming feminist theory. Feminist disability studies, 14(3), 1–32. https://doi.org/10.2979/NWS.2002.14.3.1 Garland-Thomson, R. (2005) Feminist disability studies. Signs: Journal of Women in Culture and Society, 30(2), 1557–1587. https://doi.org/10.1086/423352 Gill, R., & Norman, W. V. (2018). Telemedicine and medical abortion: Dispelling safety myths, with facts. MHealth, 4(3), 1–4. https://doi.org/10.21037/mhealth.2018.01.01

87

88

Marina Morrow and Christabelle Sethna Gillis S., Howie G., & Munford, R. (2004). Introduction. In S. Gillis, G. Howie, & R. Munford (Eds.), Third-wave feminism: A critical exploration (pp. 1–6). Palgrave Macmillan. Gilman, S. L. (1985). Black bodies, white bodies: Toward an iconography of female sexuality in late nineteenth-century art, medicine, and literature. Critical Inquiry, 12, 204–242. Goldberg, J. (2004). First year report transgender health program. Transgender Health Program; Three Bridges Community Health Centre; Vancouver Coastal Health. Gonzalez-Arnal, S., Jagger, G., & Lennon, K. (2012). Embodied selves. Palgrave. Gordon, L. (1976). Woman’s body, woman’s right: Birth control in America. Grossman/Viking. Gordon, L. (1988). Heroes of their own lives: The politics and history of family violence: Boston 1880–1960. Viking. Government of Canada. (1997). Canada health action: Building on the legacy, Volume 1- The final report. https://www.canada.ca/en/health-canada/services/health-care-system/reports-publications/health-care -renewal/canada-health-action-building-legacy-volume1.html Gratzer, D., Torous, J., Lam, R. W., Patten, S. B., Kutcher, S., Chan, S., Vigo, D., Pajer, K., & Yatham, L. N. (2021). Our digital moment: Innovations and Opportunities in digital mental health care. Canadian Journal of Psychiatry. Revue canadienne de psychiatrie, 66(1), 5–8. https://doi.org/10.1177 /0706743720937833 Greaves, L. (Ed.). (2018). Personal and political: Stories from the women’s health movement 1960-2010. Second Story Press. Greaves, L., et.al. (1999). CIHR 2000: Sex, gender and women’s health. British Columbia Centre of Excellence for Women’s Health. Greer, G. (1970). The female eunuch. Paladin Press. Grekul, J. (2011). A well-oiled machine: Alberta’s eugenics program, 1928–1972. Alberta History, 59(3), 16–24. Griffin, S. (1978). Woman and nature: The roaring inside her. Harper and Row. Grosz, E. (1994). Volatile bodies: Toward a corporeal feminism. Indiana University Press. Gruben, V., & Cameron, A. (2014). Quebec’s constitutional challenge to the Assisted Human Reproduction Act: Overlooking women’s reproductive autonomy? In S. Paterson, F. Scala, & M. K. Sokolon (Eds.), Fertile ground: Exploring reproduction in Canada (pp. 125–152). McGill-Queen’s University Press. Gruben, V., Cattapan, A., & Cameron, A. (Eds.). (2018). Surrogacy in Canada: Critical perspectives in law and policy. Irwin Law. Guttman, F. M., & Wright, A. (2018). The Sir Mortimer B. Davis Jewish General Hospital. Jewish General Hospital Foundation. Hall, R. M., & Sandler, B. R. (1982). The classroom climate: A chilly one for women? Association of American Colleges. Halseth, R. (2013). Aboriginal women in Canada: Gender, socio-economic determinants of health, and initiatives to close the wellness gap. National Collaborating Centre for Aboriginal Health. Hammond-Callaghan, M. (2015). Bridging and breaching cold war divides: Transnational peace building, state surveillance, and the voice of women. In L. Campbell, M. Dawson, & C. Gidney (Eds.), Worth fighting for: Canada’s tradition of war resistance from 1812 to the War on Terror (pp. 134–45). Between the Lines Press. Hankivsky, O., & Morrow, M. (2004). Trade agreements, homecare and women’s health. Status of Women Canada. Hankivsky, O., Varcoe, C. (2007). From global to local and over the rainbow: Violence against women. In M. Morrow, O. Hankivsky, & C. Varcoe (Eds.), Women’s health in Canada: Critical perspectives on theory and policy (pp. 477–506). University of Toronto Press. Harding, A.S. (Ed.). (2005). Surviving in the hour of darkness: The health and wellness of women of colour and Indigenous women. University of Calgary Press. Haraway, D. (1985). Manifesto for cyborgs: Science, technology, and socialist feminism in the 1980s. Socialist Review, 80, 65–108. Haraway, D. (1989). Primate visions: Gender, race and nature in the world of modern science. Routledge.

Historical and Contemporary Reflections on the Women’s Health Movement Harding, S. (Ed) (1993). The “racial” economy of science: Toward a democratic future. Indiana University Press. Health Canada. (1999). Women’s health strategy. Health Canada. Hill, L. (1996). Women of vision: The story of the Canadian Negro Women’s Association, 1951–1976. Umbrella Press. Hite, S. (1976). The Hite report: A nation-wide study of sexuality. Dell Publishing. Hoffman-Goetz, L., & Donelle, L. (2007). Chat room computer-mediated support on health issues for Aboriginal women. Health Care for Women International, 28(4), 397–418. https://doi.org/10.1080 /07399330601180057 Hogarth, R. A. (2017). Medicalizing Blackness: making racial difference in the Atlantic world, 1780-1840. UNC Press Books. hooks, b. (2015). Feminist theory: From margin to center. Routledge. Humphries, M. O. (2013). The last plague: Spanish Influenza and the politics of public health in Canada. University of Toronto Press. Iacovetta, F. Swyripa, F., & Epp, M. (2004). Sisters or strangers: Immigrant, ethnic and racialized women in Canadian history. University of Toronto Press. Irving, D., & Raj, R. (Eds.). (2014). Trans activism in Canada: A reader. Canadian Scholars’ Press. Jaggar, A. M., & Rothenberg, P. S. (1984). Feminist frameworks. McGraw-Hill. James, C. L. (1999). Women’s history on film: Requiem for Studio D. The Canadian Historical Review, 80(1), 93–96. https://doi.org/10.3138/CHR.80.1.96 Jamieson, K. (1979). Multiple jeopardy: The evolution of a Native women’s movement. Atlantis: Critical Studies in Gender, Culture & Social Justice, 4(2), 157–170. Janovicek, N. (2007). No place to go: Local histories of the battered women’s shelter movement. UBC Press. Jeffreys, S. (1997). Transgender activism: A lesbian feminist perspective. Journal of Lesbian Studies, 1(3–4), 55–74. https://doi.org/10.1300/J155v01n03_03 Johnston, R. M., Mohammed, A., & van der Linden, C. 2020. Evidence of exacerbated gender inequality in child care obligations in Canada and Australia during the COVID-19 pandemic. Politics & Gender, 16,1131–1141. https://doi.org/10.1017/S1743923X20000574 Johnstone, R. (2017). After Morgentaler: The politics of abortion in Canada. UBC Press. Jordan, T. (2010). Branching out: Second-wave feminist periodicals and the archive of Canadian women’s writing. ESC: English Studies in Canada, 36(2), 63–90. https://doi.org/10.1353/esc.2010.0033 Kang, H. B. K. (2016). Sex-selective abortion and the politics of race in multicultural Canada. In S. Stettner (Ed.), Without apology: Writings on abortion in Canada (pp. 289–304). AU Press. Kaplan, L. (1995). The story of jane: The legendary underground feminist abortion service. University of Chicago Press. Karpinski, E. C. (2014). Onco-filmographics: The politics and effects of the Canadian breast cancer documentary. Tulsa Studies in Women’s Literature, 32/33(2/1), 163–187. Kaufman, M. (2012). The day the White Ribbon campaign changed the game: A new direction in working to engage men and boys. In C. J. Greig & W. J. Martino (Eds.), Canadian men and masculinities: Historical and contemporary perspectives (pp. 139–159). Canadian Scholars Press. Kealy, L. (1979). A not unreasonable claim: Women and reform in Canada 1880–1920. Women’s Educational Press. Kelly, L. (1988). Surviving sexual violence. Polity Press. Kinsey, A., Pomeroy, W., Martin, C., & Gebhard, P. (1953). Sexual behavior in the human female. Indiana University Press. Kinsman, G., & Gentile, P. Queer Canada: National security as sexual regulation. UBC Press. Klein, N. (2019). On fire: the (burning) case for a green new deal. Simon & Schuster. Koedt, A. (1970). The myth of the vaginal orgasm. In S. Firestone & A. Koedt (Eds.), Notes from the second year: Women’s liberation – Major writings of the radical feminists (pp. 37–41). Radical Feminism. Kolodny, A. (2000). “A sense of discovery, mixed with a sense of justice”: Creating the first women’s studies program in Canada. NWSA Journal, 12(1), 143–164. https://doi.org/10.2979/NWS.2000.12.1.143 Korinek, V. J. (2000). Roughing it in the suburbs: Reading Chatelaine magazine in the fifties and sixties. University of Toronto Press.

89

90

Marina Morrow and Christabelle Sethna Korinek, V. J. (2018). Prairie fairies: A history of queer communities and people in western Canada, 1930–1985 (Vol. 46). University of Toronto Press. Koivusalo, M. (2003). Assessing the health policy implications of WTO trade and investment agreements. In K. Lee (Ed.), Health impacts of globalization: Towards a global governance (pp. 161–175). Palgrave Macmillan. Koyama, E. (2001). The transfeminist manifesto. http://eminism.org/readings/pdf-rdg/tfmanifesto.pdf Kruks, S. (2010). Simone de Beauvoir: Engaging discrepant materialisms. In D. H. Coole & S. Frost (Eds.), New materialisms: Ontology, agency, and politics (pp. 258–281). Duke University Press. Labonté, R., Runnels, V., Packer, C., & Deonandan, R. (Eds.). (2013). Travelling well: Essays in medical tourism. Vol. 4: Transdisciplinary Studies in Population Health Series. Institute of Population Health, University of Ottawa. LaFree, G. D. (1989). Rape and criminal justice: The social construction of sexual assault. Wadsworth. Laquer, T. (1990). Making sex: Body and gender from the Greeks to Freud. Harvard University Press. Larkin, J. (1994). Sexual harassment: High school girls speak out. Second Story Press. Lavallée, J. (2018) Women and the Quiet Revolution. The Canadian Encyclopedia. https://thecanadianencyclopedia .ca/en/article/women-and-quiet-revolution Laughlin, K. A., Gallagher, J., Cobble, D. S., Boris, E., Nadasen, P., Gilmore, S., & Zarnow, L. (2010). Is it time to jump ship? Historians rethink the waves metaphor. Feminist Formations, 22(1), 76–135. Lavigne, M., Stoddart, J., Dumont, M., & Jean, M. (1982). Histoire des femmes au Quebec depuis quatre siecles. Les Quinze. Lévesque, A. (2010). Making and breaking the rules: Women in Quebec, 1919–1939 (Y. M. Klein, Trans.). University of Toronto Press. Levine-Rasky, C., & Kowalchuk, L. (Eds.). (2020). We resist: Defending the common good in hostile times. McGill-Queen’s Press. Lippman, A. (1999). Choice as a risk to women’s health. Health, Risk & Society, 1(3), 281–291. https://doi .org/10.1080/13698579908406317 Little, M., Marks, L., Beck, M., Paszat, E., & Tom, L. (2020). Family matters: Immigrant women’s activism in Ontario and British Columbia, 1960s–1980s. Atlantis, 41(1), 105–123. https://doi.org/10.7202 /1074022ar Little, M. H. (1998). No car, no radio, no liquor permit the moral regulation of single mothers in Ontario, 1920. Oxford University Press. Lord Dalhousie Panel. (2019). Report on Lord Dalhousie’s history of slavery and race. https://dalspace.library. dal.ca/bitstream/handle/10222/77950/Lord%20Dal%20Panel%20Final%20Report_web.pdf Lorde, A. (1984). Age, race, class, and sex: Women redefining difference. In A. Lorde (Ed.), Sister outsider: Essays and speeches (pp. 114–123). Crossings Press. Luby, B. (2020). Dammed: The politics of loss and survival in Anishinaabe territory. Univerity of Manitoba Press. Luxton, M. K. (2001). Feminism as a class act: Working-class feminism and the women’s movement in Canada. Labour/Le Travail, 63–88. Lux, M. K. (2016). Separate beds: A history of Indian hospitals in Canada, 1920s–1980s. University of Toronto Press. Lysnes, B. (1986). Side effects: A dramatic prescription. Healthsharing. 7(4), 13–17. MacMurchy, H. (1994). Popular midwifery and maternity services for Canadian pioneer women. In D. Dodd & D. Gorham (Eds.), Caring and curing: Historical perspectives on women and healing in Canada (pp. 135–161). University of Ottawa Press. MacKinnon, C. A. (1979). Sexual harassment of working women: A case of sex discrimination (No. 19). Yale University Press. Magalhaes, L., Carrasco, C., & Gastaldo, D. (2010). Undocumented migrants in Canada: A scope literature review on health, access to services, and working conditions. Journal of Immigrant and Minority Health, 12(1), 132. https://doi.org/10.1007/s10903-009-9280-5

Historical and Contemporary Reflections on the Women’s Health Movement Mahal, I. (2020). Coronavirus has sped up Canada’s adoption of telemedicine. Let’s make that change permanent. The Conversation. https://theconversation.com/coronavirus-has-sped-up-canadas-adoption -of-telemedicine-lets-make-that-change-permanent-134985 Mann, B., & Ferrari, M. (Eds.). (2017). “On ne naît pas une femme; on le devient”: The life of a sentence. Oxford University Press. Marvel, S. (2016). Laws of conception: queer genealogy of Canada’s assisted human reproduction act. FIU Law Review, 12(1), 81–116. https://doi.org/10.25148/lawrev.12.1.8 Mason, C. L., & Magnet, S. (2012). Surveillance studies and violence against women. Surveillance & Society, 10(2), 105–118. https://doi.org/10.24908/ss.v10i2.4094 Masson, D. (1999–2000). Constituting “post-welfare state” arrangements: The role of women’s movement service groups in Quebec. Resources for Feminist Research, 27(3/4), 49–69. Masters, W. H., & Johnson, V. E. (1966). Human sexual response. Bantam Books. Mathieson, C. (2007). Negoitating sexualities in women’ health care. In M. Morrow, O. Hankivsky & C. Varcoe (Eds.), Women’s health in Canada: Critical perspectives on theory and policy (pp. 272–296). University of Toronto Press. McCallum, M. J. L. (2014). Indigenous women, work and history, 1940–1980. University of Manitoba Press. McCaughey, M. (1997). Real knockouts: The physical feminism of women’s self-defense. New York University Press. McInturff, K. (2017, December 13). A deficit worth worrying about: The gendered and racialized wage gap. Canadian Women’s Foundation. https://canadianwomen.org/blog/deficit-worth-worrying-gendered -racialized-wage-gap/ McIvor, S. D. (1999). Self-government and Aboriginal women. In E. Dua & A. Robertson (Eds.), Scratching the surface: Canadian anti-racist feminist thought (pp. 167–186). Women’s Press. McLaren, A. (1990). Our own master race: Eugenics in Canada, 1885–1945. McClelland and Stewart. McLaren, A., & McLaren, A. T. (1986). The bedroom and the state: The changing practices and politics of contraception and abortion in Canada, 1880–1980. McClelland and Stewart. McPherson, K. (2003). Bedside matters: The transformation of Canadian nursing, 1900–1990. University of Toronto Press. Mendes, K., Ringrose, J., & Keller, J. (2019). Digital feminist activism: Girls and women fight back against rape culture. Oxford University Press. Mental Health Commission of Canada. (2007). Changing directions, changing lives: The mental health strategy for Canada. Mental Health Commission of Canada. https://www.mentalhealthcommission.ca/sites /default/files/MHStrategy_Strategy_ENG_0_1.pdf Millet, K. (1970). Sexual politics. Double Day and Company. Mills, S. (2010). The empire within: Postcolonial thought and political activism in sixties Montreal (Vol. 23). McGill-Queen’s Press. Mills, S. (2016). A place in the sun: Haiti, Haitians, and the remaking of Quebec. McGill-Queen’s University Press. Mitchell, M. A. (2007). No laughing matter: Adventure, activism & politics. Granville Island Pub. Mitchinson, W. (1991). The nature of their bodies: Women and their doctors in Victorian Canada. University of Toronto Press. Mitchinson, W. (1993). The medical treatment of women. In S. Burt, L. Code & L. Dorney (Eds.), Changing patterns: Women in Canada (2nd ed., pp. 391–421). MClelland & Stewart. Mitchinson, W. (2013) Body failure: Medical views of women, 1900–1950. University of Toronto Press. Mlambo-Ngcuka, P. (2020). Violence against women and girls: The shadow pandemic. UN Women. https://www.unwomen.org/en/news/stories/2020/4/ statement-ed-phumzile-violence-against-women-during-pandemic Mohanty, C. T., Russo, A., & Torres, L. (Eds.). (1991). Third world women and the politics of feminism. Indiana University Press.

91

92

Marina Morrow and Christabelle Sethna Monnais, L. (2016). Médicine(s) et santé: Une petite histoire globale-19e et 20e siècles. Les Presses de l’universitié de Montreal. Montpetit, J. (2019, May 16) Religious symbols ban pits Quebec feminists against each other. Hearings into Quebec’s secularism bill wrapped Thursday with a feminist group calling it “sexist.” CBC News. https://www.cbc.ca /news/canada/montreal/bill-21-quebec-feminists-on-opposite-sides-of-religious-symbols-ban-1.5139422 Moore, N. (2015). The changing nature of eco/feminism: Telling stories from Clayoquot Sound. UBC Press. Morgen, S. (2002). Into our own hands: The women’s health movement in the United States, 1969–1990.Rutgers University Press. Morrow, M. (1997). Feminist anti-violence activism: The struggle towards multi-centred politics [Doctoral dissertation, Ontario Institute for Studies in Education of the University of Toronto]. TSpace Repository. https://tspace.library.utoronto.ca/bitstream/1807/10969/1/NQ27701.pdf Morrow, M. (2017). “Women and madness revisited”: The promise of intersectional and mad studies frameworks. In M. Morrow & L. Halinka Malcoe (Eds.), Critical inquiries for social justice in mental health (pp. 33–59). University of Toronto Press. Morrow, M., Hankivsky, O., & Varcoe, C. (2004). Women and violence: The effects of dismantling the welfare state. Journal of Critical Social Policy, 24(3), 358–384. https://doi.org/10.1177/0261018304044364 Moss, E., Henderikus, L., Stam, J., & Kattevilder, D. (2013) From suffrage to sterilization: Eugenics and the women’s movement in 20th century Alberta” Canadian Psychology, 54(2), 105–114. https://doi.org /10.1037/a0032644 Moynagh, M., & Forestell, N. (Eds.). (2012). Documenting first-wave feminisms. Vol. 1: Transnational collaborations and crosscurrents. University of Toronto Press. Murphy, M. (2012). Seizing the means of reproduction: Entanglements of feminism, health, and technoscience. Duke University Press. Myers, T. (2006). Caught: Montreal’s modern girls and the law, 1869–1945. University of Toronto Press. Namaste, V. (2019). Savoirs Créoles: Leçons du SIDA pour l’histoire de Montréal. Mémoire d’encrier. Naples, N., & Desai, M. (Eds.). (2002). Women’s activism and globalization: Linking local struggles and transnational politics. Routledge. National Inquiry into Missing and Murdered Indigenous Women and Girls. (2019, June 4). Reclaiming power and place: The final report of the National Inquiry into Missing and Murdered Indigenous Women and Girls. Volume 1a. https://www.mmiwg-ffada.ca/wp-content/uploads/2019/06/Final_Report_Vol_1a.pdf Native Women’s Association of Canada. Sisters in spirit: Grandmother Moon. https://www.nwac.ca/wp -content/uploads/2015/05/NWAC_Voices-of-Our-Sisters-In-Spirit_2nd-Edition_March-2009.pdf Nelson, A. (2011). Body and soul: The Black Panther Party and the fight against medical discrimination. University of Minnesota Press. Nelson, C. A. (2004). The fruits of resistance: Reading Portrait of a Negro Slave on the sly. Public, 30, 13–23. https://public.journals.yorku.ca/index.php/public/article/view/30054/27617 Nelson, J. (2015). More than medicine: A history of the feminist women’s health movement. NYU Press. Nopper, S., & Harley, J. (1986). How society’s obsession with thinness is consuming women. Herizons: Women’s News and Feminist Views, 4(7), 24–27. Norman, W. V., Guilbert, E. R., Okpaleke, C., Hayden, A. S., Lichtenberg, E. S., Paul, M., O’Connell White, C., & Jones, H. E. (2016). Abortion health services in Canada: Results of a 2012 national survey. Canadian Family Physician, 62(4), e209–e217. https://www.ncbi.nlm.nih.gov/pmc/articles /PMC4830677/pdf/062e209.pdf O’Neill, B. (2003, March 5. The Royal Commission on the Status of Women: Looking back, looking forward [Keynote address]. International Women’s Day Dinner sponsored by AESES and the Office of the President, University of Manitoba, Canada. Ostroff, J. (2016). Teen consent activists Tessa Hill and Lia Valente win Toronto Women of Distinction Award. HuffingtonPost. https://www.huffingtonpost.ca/2016/03/08/we-give-consent-tessa-hill-lia-valente _n_9411044.html

Historical and Contemporary Reflections on the Women’s Health Movement Oxfam Canada. (2017, March 4). Time to turn feminist words into action. Feminist Scorecard 2017: Tracking government action to advance women’s rights and gender equality. https://www.oxfam.ca/publication/time -to-turn-feminist-words-into-action/ Owram, D. (1996). Born at the right time: A history of the baby boom generation. University of Toronto Press. Parr, J. (1990). The gender of breadwinners: Women, men, and change in two industrial towns, 1880–1950. University of Toronto Press. Patton, C. (1990). Inventing AIDS. Routledge. Patton, C., & Richter, B. (2007). Selling “the change”: A comparison of the dangers of hormone replacement therapies in profit vs national health care delivery systems. In M. Morrow, O. Hankivsky, & C. Varcoe (Eds.), Women’s health in Canada: Critical perspectives on theory and policy (pp. 434–455). University of Toronto Press. Paul, P. (1994). The contribution of the Grey Nuns to the Development of Nursing in Canada: historiographical issues. Canadian bulletin of medical history = Bulletin canadien d’histoire de la medecine, 11(1), 207–217. https://doi.org/10.3138/cbmh.11.1.207 Peach, I., & Ladner, K. (2010). Missing out and missing: Connecting the Economic and political marginalization of women to the phenomenon of disappearance. In B. Anderson, W. Kubik, & M. R. Hampton (Eds.)., Torn from our midst: Voices of grief, healing and action from the Missing Indigenous Women Conference, 2008 (pp. 86–103). CPRC Press. Penfold, S., & Walker, G. (1983). Women and the psychiatric paradox. Eden Press. Perreault, I., & Thifault, M. (2012). Les Soeurs de la Providence et les psychiatres modernistes: enjeux professionnels en santé mentale au Québec, 1910–1965. Études d’histoire religieuse, 78(2), 59–79. Perkins Gilman, C. (1899). The yellow wallpaper. Small and Maynard. Petro, A. M. (2015). After the wrath of God: AIDS, sexuality, and American religion. Oxford University Press. Pizzey, E. (Ed.). (1993). Feminism and the mastery of nature. Routledge. Prentice, A., Bourne, P., Brandt, G. C., Light, B., Mitchinson, W., & Black, N. (1988). Canadian women: A history (p. 231). Harcourt Brace Jovanovich. Price, J., & Shildrick, M. (Eds.). (1999). Feminist theory and the body: A reader. Routledge. Puar, J. K. (2012). “I would rather be a cyborg than a goddess”: Becoming-intersectional in assemblage theory. PhiloSOPHIA, 2(1), 49–66. http://jasbirkpuar.com/wp-content/uploads/2018/08/JKP_Cyborg -Goddess.pdf Puri, N., Coomes, E. A., Haghbayan, H., & Gunaratne, K. (2020). Social media and vaccine hesitancy: new updates for the era of COVID-19 and globalized infectious diseases. Human Vaccines & Immunotherapeutics, 16(11), 2586–2593. https://doi.org/10.1080/21645515.2020.1780846 Quiney, L. (2013). “Rendering valuable service”: The politics of nursing during the 1918–19 Influenza crisis. In M. Farhni & E. W. Jones (Eds.). Epidemic encounters: Influenza, society, and culture in Canada, 1918–20 (pp. 48–69). University of Toronto Press. Quiney, L. (2018). This small army of women Canadian volunteer nurses and the First World War. UBC Press. Raby, R., Caron, C., Théwissen-LeBlanc, S., Prioletta, J., & Mitchell, C. (2018). Vlogging on YouTube: The online, political engagement of young Canadians advocating for social change. Journal of Youth Studies, 21(4), 495–512. https://doi.org/10.1080/13676261.2017.1394995 Raymond, J. G. (1979). The transsexual empire: The making of the she-male. Beacon Press. Razack, S. H. (2000). Gendered racial violence and spatialized justice: The murder Pamela George. Canadian Journal of Law & Society/La Revue Canadienne Droit et Société, 15(2), 91–130. https:// doi.org/10.1017/S0829320100006384 Razack, S. H. (2016). Gendering disposability. Canadian Journal of Women and the Law, 28(2), 285–307. https://doi.org/10.3138/cjwl.28.2.285 Rebick, J. (2005). Ten thousand roses: The making of a feminist revolution. Penguin Canada. Rebick, J. (2018). The heroes in my head. House of Anansi. Redfern, C., & Aune, K. (2010). Reclaiming the F word: The new feminist movement. Zed.

93

94

Marina Morrow and Christabelle Sethna Reger, J. (2014). Micro-cohorts, feminist discourse, and the emergence of the Toronto SlutWalk. Feminist Formations, 26(1), 49–69. https://doi.org/10.1353/ff.2014.0005 Reid-Maroney, N., de B’béri, B. E., & Bernard, W. T. (Eds.). (2018). Women in the “promised land”: Essays in African Canadian history. Women’s Press. Rentschler, C. A. (2014). Rape culture and the feminist politics of social media. Girlhood studies, 7(1), 65–82. https://doi.org/10.3167/ghs.2014.070106 Reverby, S. (2003). Thinking through the body and the body politic: Feminism, History, and health-care policy in the United States. In G. Feldberg, M. Ladd-Taylor, & A. Li (Eds.), Women, health, and nation: Canada and the United States since 1945 (pp. 404–420). McGill-Queen’s University Press. Revie, L. (2006). More than just boots! The eugenic and commercial concerns behind AR Kaufman’s birth controlling activities. Canadian Bulletin of Medical History, 23(1), 119–143. https://doi.org/10.3138 /cbmh.23.1.119 Rhodes, J. (1999). Mary Ann Shadd Cary: The Black press and protest in the nineteenth century. Indiana University Press. Rich, A. (1980). Compulsory heterosexuality and lesbian existence. Signs: Journal of Women in Culture and Society, 5(4), 631–660. https://doi.org/10.1086/493756 Riessman, C. K. (2010). Women and medicalization: A new perspective. In R. Weitz (Ed.), The politics of women’s bodies: Sexuality, appearance, and behavior (3rd ed., pp. 46–63). Oxford University Press. Rivers, N. (2017). Postfeminism(s) and the arrival of the fourth wave. Palgrave Macmillan. Roach Pierson, R. (1993). The politics of the body. In M. G. Cohen, R. Roach Pierson, P. Bourne & P. Masters (Eds.), Canadian women’s issues. Volume I: Strong voices twenty five years of women’s activism in English Canada (pp. 98–185). James Lorimer & Company. Robbins, W., Luxton, M., Eichler, M., & Descarries, F. (Eds.). (2008) Minds of our own: Inventing feminist scholarship and women’s studies in Canada and Québec, 1966–76 (pp. 1–39). Wilfred Laurier Press. Rodgers, S. (2006). Abortion denied: Bearing the limits of the law. In C. Flood (Ed.), Just medicare: What’s in, what’s out, how we decide (pp. 107–136). University of Toronto Press. Roht-Arriaza, N. (1996). Of seeds and shamans: The appropriation of the scientific and technical knowledge of Indigenous and local communities. Michigan Journal of International Law, 17(4), 919–965. https:// repository.law.umich.edu/mjil/vol17/iss4/2 Rosenberg, D. G. (1996). Integrating sectors in the platform for action: Relationships for feminist action. Canadian Woman Studies, 16(3), 82–86. https://cws.journals.yorku.ca/index.php/cws/article/view /12103/11186 Ross, L. J., & Solinger, R. (2017). Reproductive justice: An introduction. University of California Press. Ross, B. (1995). The house that Jill built: A lesbian nation in formation. University of Toronto Press. Rotenberg, C. (2017, October 26). From arrest to conviction: Court outcomes of police-reported sexual assaults in Canada, 2009 to 2014. Juristat, 1–57. https://www150.statcan.gc.ca/n1/en/pub/85-002-x /2017001/article/54870-eng.pdf Royal Canadian Mounted Police (RCMP). (2014, August 5). Missing and murdered Aboriginal women and girls: A national operational overview. https://web.archive.org/web/20160510113547/http:/www.rcmp -grc.gc.ca/pubs/mmaw-faapd-eng.htm Rubin, G. (1982). Thinking sex: Notes for a radical theory of the politics of sexuality. In C. S. Vance (Ed.), Pleasure and danger: Exploring female sexuality (pp. 267–293). Pandora Press. Ruddick, S. (1983). Maternal thinking. In J. Trebilcot (Ed.), Mothering: Essays in feminist theory (pp. 213–230). Rowan and Allanheld. Runnels, V., Tudiver, S., Doull, M., & Boscoe, M. (2014). The challenges of including sex/gender analysis in systematic reviews: a qualitative survey. Systematic Reviews, 3(1), 33. https://doi.org/10.1186/2046 -4053-3-33 Rutherdale, M. (Ed.). (2010). Caregiving on the periphery: Historical perspectives on nursing and midwifery in Canada. McGill-Queen’s University Press.

Historical and Contemporary Reflections on the Women’s Health Movement Salem, S. (2018). Intersectionality and its discontents: Intersectionality as traveling theory. European Journal of Women’s Studies, 25(4), 403–418. https://doi.org/10.1177/1350506816643999 Sampasa-Kanyinga, H., & Lewis, R. F. (2015). Frequent use of social networking sites is associated with poor psychological functioning among children and adolescents. Cyberpsychology, Behavior, and Social Networking, 18(7), 380–385. https://doi.org/10.1089/cyber.2015.0055 Sangster, J. (2001). Regulating girls and women: Sexuality, family, and the law in Ontario, 1920–1960. Oxford University Press. Sangster, J. (2018). One hundred years of struggle: The history of women and the vote in Canada. UBC Press. Saurette, P., & Gordon, K. (2016). The changing voice of the anti-abortion movement: The rise of “pro-woman” rhetoric in Canada and the United States. University of Toronto Press. Schiebinger, L. (2004). Feminist history of colonial science. Hypatia 19(1), 233–254. https://doi. org/10.1111/j.1527-2001.2004.tb01276.x Seager, J. (2003). Rachel Carson died of breast cancer: The coming of age of feminist environmentalism. Signs: Journal of Women in Culture and Society, 28(3), 945–972. https://doi.org/10.1086/345456 Seaman, B. (1995). The doctors’ case against the pill (25th anniversary ed.). Hunter House. Sethna, C. (2006). The evolution of the Birth Control Handbook: From student peer education manual to feminist self-empowerment text, 1968–1975. Canadian Bulletin of Medical History/Bulletin canadien d’histoire de la médecine, 23(1), 89–118. https://doi.org/10.3138/cbmh.23.1.89 Sethna, C. (2010). Animal sex: Purity education and the naturalization of the abstinence agenda. Sex Education, 10(3), 267–279. https://doi.org/10.1080/14681811.2010.491636 Sethna, C., & Doull, M. (2013). Spatial disparities and travel to freestanding abortion clinics in Canada. In Women’s Studies International Forum (Vol. 38, pp. 52–62). Pergamon. Sethna, C., & Hewitt, S. (2009). Clandestine operations: The Vancouver women’s caucus, the abortion caravan, and the RCMP. Canadian Historical Review, 90(3), 463–496. https://doi.org/10.1353/can.0.0189 Sethna, C., & Hewitt, S. (2018). Just watch US: RCMP surveillance of the women’s liberation movement in Cold War Canada. McGill-Queen’s University Press. Sethna, C., Palmer, B., Ackerman, K., & Janovicek, 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 Sharma, N. (2008). On being not Canadian: The social organization of “migrant workers” in Canada. Canadian Review of Sociology/Revue canadienne de sociologie, 38(4), 415–439. https://doi.org/10.1111 /j.1755-618X.2001.tb00980.x Shaw, J. (2006). Reality check: A close look at accessing abortion services in Canadian hospitals. Canadians for Choice. Shingler, B. (2021, May 29). Joyce Echaquan’s death lays bare, once again, problems in Quebec’s health-care system. CBC News. https://www.cbc.ca/news/canada/montreal/quebec-joyce-echaquan-reaction-1.6044631 Shiva, V., & Mies, M. (1993). Ecofeminism. Fernwood Publications. Small, S., & Thornhill, E. M. A. (2008). Harambec!: Quebec Black women pulling together. Journal of Black Studies, 38(3), 427–442. Smith, M. C. (1999). Lesbian and gay rights in Canada: Social movements and equality-seeking, 1971–1995. University of Toronto Press. Smith, A. (2015). Conquest: sexual violence and American Indian genocide. South End Press. Snyder, R. C. (2008). What is third-wave feminism? A new directions essay. Signs: Journal of Women in Culture and Society, 34(1), 175–196. https://doi.org/10.1086/588436 Somerville, S. (1994). Scientific racism and the emergence of the homosexual body. Journal of the History of Sexuality, 5(2), 243–266. https://www.jstor.org/stable/3704199 Sordi, A. (2011) Violence against women with disabilities: Violence prevention review. Vecova Centre for Disability Services; Canadian Women’s Foundation. Spieldoch, A. (2001). GATS and healthcare – Why do women care? International Gender and Trade Network Secretariat.

95

96

Marina Morrow and Christabelle Sethna Spitzer, D. (Ed.). (2011). Engendering migrant health: Canadian perspectives. University of Toronto Press. Stanko, E. (1986). Intimate intrusions: Women’s experiences of male violence. Routledge & Kegan Paul. Stanley, H. (2019). Unsex me here! Gender as a barrier to female practice: A historical introduction to women doctors in Canada and professionalism in Canada: A timeline. In E. Waugh, S. Ross, & S. Schipper (Eds.), Female doctors in Canada: Experience and culture. University of Toronto Press. Stasiulis, D. K., & Bakan, A. B. (2003). Negotiating citizenship: Migrant women in Canada and the global system. Palgrave Macmillan. Status of Women Canada. (1995). Setting the stage for the next century: The federal plan for gender equality. https://publications.gc.ca/collections/Collection/SW21-15-1995E.pdf Steedman, M. (2008). Angels of the workplace: Women and the construction of gender relations in the Canadian clothing industry, 1890–1940. University of Toronto Press. Stettner, S. (2012). “He is still unwanted”: Women’s assertions of authority over abortion in letters to the Royal Commission on the Status of Women in Canada. Canadian Bulletin of Medical History, 29(1), 151–171. https://doi.org/10.3138/cbmh.29.1.151 Stienstra, D. (2003). “Listen, really listen, to us”: Consultation, disabled people and governments in Canada. In D. Stienstra & A. Wight-Felske (Eds.), Making equality: History of advocacy and persons with disabilities in Canada (pp. 33–47). Captus Press. Stote, K. (2015). An act of genocide: Colonialism and the sterilization of Aboriginal women. Fernwood Publishing. Strange, C. (1995). Toronto’s girl problem: The perils and pleasures of the city, 1880–1930. University of Toronto Press. Strong-Boag, V. J. (1976). Parliament of women: The National Council of Women of Canada, 1893–1929. University of Ottawa Press. Sullivan, R. (2014). Bonnie Sherr Klein’s “Not a love story.” University of Toronto Press. Thobani, S. (1992). Making the links: South Asian women and the struggle for reproductive rights. Canadian Woman Studies, 13(1), 19–22. Toman, C. (2015). Sister soldiers of the Great War: The nurses of the Canadian Army Medical Corps. UBC Press. Treichler, P. A. (1987). AIDS, homophobia and biomedical discourse: An epidemic of signification. Cultural Studies, 1(3), 263–305. https://doi.org/10.1080/09502388700490221 Truth and Reconciliation Commission of Canada. (2015). Honouring the truth, reconciling for the future: Summary of the final report. http://www.trc.ca/assets/pdf/Honouring_the_Truth_Reconciling_for_the _Future_July_23_2015.pdf Tuana, N. (2006). The speculum of ignorance: The women’s health movement and epistemologies of ignorance. Hypatia, 21(3), 1–19. https://doi.org/10.1111/j.1527-2001.2006.tb01110.x Tuana, N. (2010). Engendering philosophy of science. In R. Rosenberger (Ed.), Philosophy of science: Five questions. VIP Press. Tunney, C. (2019). Trudeau says deaths and disappearances of Indigenous women and girls amount to “genocide.” CBC News. https://www.cbc.ca/news/politics/trudeau-mmiwg-genocide-1.5161681 United Nations. (1995). The Beijing platform for action, report on the Fourth World Conference on Women. https://www.un.org/en/events/pastevents/pdfs/Beijing_Declaration_and_Platform_for_Action.pdf United Nations. (2021). Promotion and protection of the human rights and fundamental freedoms of Africans and of people of African descent against excessive use of force and other human rights violations by law enforcement officers. https://undocs.org/A/HRC/47/53 Urla, J., & Terry, J. (1995). Introduction: Mapping embodied deviance. In J. Urla & J. Terry (Eds.), Deviant bodies (pp. 1–18). Indiana University Press. Valiante, G. (2019, May 16). Quebec’s secularism bill is a direct attack on women’s bodies, president of feminist organization says. The Globe and Mail. https://www.theglobeandmail.com/canada/article -archbishop-fears-quebec-governments-secularism-bill-will-erode-2/ Valverde, M. (1991). The age of light, soap and water: Moral reform in English Canada, 1885–1925. McClelland & Stewart.

Historical and Contemporary Reflections on the Women’s Health Movement Valverde, M. (1992). “When the mother of the race is free:” Race, reproduction, and sexuality in first-wave feminism. In F. Iacovetta & M. Valverde (Eds.), Gender conflicts: New essays in women’s history (pp. 3–26). University of Toronto Press. Vancouver Police Department. (2011, June). The tragedy of missing and murdered Aboriginal women in Canada: We can do better. A Position Paper by Sisterwatch Project of the Vancouver Police Department and the Women’s Memorial March Committee. https://vpd.ca/police/assets/pdf/reports-policies /missing-murdered-aboriginal-women-canada-report.pdf Vanstone, G. (2007). D is for daring: The women behind the films of Studio D. Sumach Press. Vickers, J. (1992). The intellectual origins of the women’s movements in Canada. In C. Backhouse & D. H.Flaherty (Eds.), Challenging times: The women’s movement in Canada and the United States (pp. 39–60). McGill-Queen’s University Press. Vissandjée, B., Thurston, W., Apale, A., & Nahar, K. (2007). Women’s health at the intersections of gender and experience of international migration. In M. Morrow, O. Hankivsky, & C. Varcoe (Eds.), Women’s health in Canada: Critical perspectives on theory and policy (pp. 221–243). University of Toronto Press. Waldron, I. (2018). There’s something in the water: Environmental racism in indigenous and black communities. Fernwood Publishing. Walia, H. (2010). Transient servitude: Migrant labour in Canada and the apartheid of citizenship. Race & Class, 52(1), 71–84. https://doi.org/10.1177/0306396810371766 Walker, G. (1990). Family violence and the women’s movement: The conceptual politics of struggle. University of Toronto Press. Walker, R. (Ed.). (1995). To be real: Telling the truth and changing the face of feminism. Anchor Books. Walkowitz, J. R. (1980). Prostitution and victorian society: Women, class, and the state. Cambridge University Press. Warner, D. F., & Brown, T. H. (2012). Understanding how race/ethnicity and gender define age-trajectories of disability: An intersectionality approach. Social Science & Medicine (1982), 72(8), 1236–1248. https:// doi.org/10.1016/j.socscimed.2011.02.034 Wendell, S. (1996). The rejected body: Feminist philosophical reflections on disability. Routledge. Wells, K. (2020). The Abortion Caravan: When women shut down government in the battle for the right to choose. Second Story Press. Wells, S. (2008). Our bodies, ourselves: Reading the written body. Signs: Journal of Women in Culture and Society, 33(3), 697–723. https://doi.org/10.1086/523710 Wertheimer, S. (2007). The infectious continent: Africa, disease, and the western imagination. In T. Falola & M. M. Heaton (Eds.), HIV/AIDS, illness, and African well-being (pp. 28–44). Rochester University Press. White, M. (2001). GATS and women. Foreign Policy in Focus, 6(2). White, C., & Goldberg, J. (2007). Expanding our understanding of gendered violence: Violence against trans people and their loved ones. Canadian Woman Studies/Les chaiers de la femme, 25(1/2), 124–127. Wiebe, S. M. (2017). Toxic matters: Vital and material struggles for environmental reproductive justice. In S. Stettner, K. Burnett, & T. Hay (Eds.), Abortion: History, politics, and reproductive justice after Morgentaler (pp. 313–333). UBC Press. Williams, M. L. (2017). I don’t belong in here! A social media analysis of digital protest, transgender rights and international restroom legislation. In K. Langmia & T. C. M. Tyree (Eds.), Social Media: Culture and Identity (pp. 27–48). Lexington Books. Williams, L., & Fletcher, A., Hanson, C., Neapole, J., & Pollack, M. (2018). Women and climate change impacts and action in Canada: Feminist, Indigenous, and Intersectional perspectives. Canadian Research Institute for the Advancement of Women; Alliance for Intergenerational Resilience. Women and Health Protection. (2010). About us: The working group. http://www.whp-apsf.ca/en/about.html Yee, J., Apale, A. N., & Deleary, M. (2011). Sexual and reproductive health, rights, and realities and access to services for First Nations, Inuit, and Métis in Canada. Journal of Obstetrics and Gynaecology Canada, 33(6), 633–637. https://doi.org/10.1016/S1701-2163(16)34914-3

97

98

Marina Morrow and Christabelle Sethna Young, I. M. (1989). Throwing like a girl: A phenomenology of feminine body comportment, motility and spatiality. In J. Allen & I. M. Young (Eds.), The thinking muse: Feminism and modern French philosophy (pp. 51–70). Indiana University Press. Young, L. (1999). Racializing femininity. In J. Arthurs, & J. Grimshaw (Eds.), Women’s bodies: Discipline and transgression (pp. 67–90). Cassell. Zalta, E., Nodelman, U., Allen, C., & Anderson, L. (Eds.). (2014). Feminist perspectives on the power. Stanford Encyclopedia of Philosophy. https://eltalondeaquiles.pucp.edu.pe/wp-content/uploads/2016/05 /feminist-power_sc.pdf Zawilski, V. (Ed.). (2021). Body studies in Canada: Critical approaches to embodies experiences. Canadian Scholars Press. Zywert, K., & Quilley, S. (Eds.). (2020). Health in the Anthropocene: Living well on a finite planet. University of Toronto Press.

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

100

Sepali Guruge and Atsuko Matsuoka

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

Elder Abuse as a Health Issue

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

101

102

Sepali Guruge and Atsuko Matsuoka

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

Elder Abuse as a Health Issue

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

103

104

Sepali Guruge and Atsuko Matsuoka

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

Elder Abuse as a Health Issue

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

105

106

Sepali Guruge and Atsuko Matsuoka

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

Elder Abuse as a Health Issue

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.

107

108

Sepali Guruge and Atsuko Matsuoka

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

Elder Abuse as a Health Issue

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.

109

110

Sepali Guruge and Atsuko Matsuoka

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

Elder Abuse as a Health Issue

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

111

112

Sepali Guruge and Atsuko Matsuoka Choudhry, U. K., Jandu, S., Mahal, J., Singh, R., Sohi-Pabla, H., & Mutta, B. (2002). Health promotion and participatory action research with South Asian women. Journal of Nursing Scholarship, 34(1), 75–81. https://doi.org/10.1111/j.1547-5069.2002.00075.x Citizenship and Immigration Canada. (2013). Backgrounder – Action plan for faster family reunification: Phase 2. http://www.cic.gc.ca/english/department/media/backgrounders/2013/2013-05-10b.asp Dauvergne, M. (2003). Family violence against seniors. Canadian Social Trends, Spring, 10–14. http://www .statcan.gc.ca/pub/11-008-x/2002004/article/6496-eng.pdf Dixon-Woods, M., Cavers, D., Agarwal, S., Annandale, E., Arthur, A., Harvey, J., Hsu, R., Katbamna, S., Olsen, R., Smith, L., Riley, R., & Sutton, A. J. (2006). Conducting a critical interpretive synthesis of the literature on access to healthcare by vulnerable groups. BMC Medical Research Methodology, 6(1), 35. https://doi.org/10.1186/1471-2288-6-35 Dong, X., Chang, E., Wong, E., Wong, B., & Simon, M. A. (2011). How do US Chinese older adults view elder mistreatment? Findings from a community-based participatory research study. Journal of Aging Health, 23(2), 289–312. https://doi.org/10.1177/0898264310385931 Donnelly, T. T. (2006). The health-care practices of Vietnamese-Canadian women: Cultural influences on breast and cervical cancer screening. Canadian Journal of Nursing Research, 38(1), 82. https://pubmed .ncbi.nlm.nih.gov/16671282/ Dunn, J. R., & Dyck, I. (2000). Social determinants of health in Canada’s immigrant population: Results from the national population health survey. Social Science & Medicine, 51(11), 1573–1593. https://doi.org /10.1016/S0277-9536(00)00053-8 Employment and Social Development Canada. (2018). Social isolation of seniors. A focus on new immigrant and refugee seniors in Canada. http://www12.esdc.gc.ca/sgpe-pmps/servlet/sgpp-pmps-pub?lang=eng [email protected]&curactn=dwnld&pid=57459&did=5399 Forbat, L. (2004). The care and abused of minoritized ethnic groups: The role of statutory services. Critical Social Policy, 24(3), 312–331. https://doi.org/10.1177/0261018304044362 Gee, E. M. T., Kobayashi, K. M., & Prus, S. G. (2004). Examining the healthy immigrant effect in mid-to later life: findings from the Canadian Community Health Survey. Canadian Journal on Aging, 23(5), S55-S63. https://doi.org/10.1353/cja.2005.0032 Guo, S. (2013). Economic integration of recent Chinese immigrants in Canada’s second-tier cities: The triple glass effect and immigrants’ downward social mobility. Canadian Ethnic Studies, 45(3), 95–115. https://doi.org/10.1353/ces.2013.0047 Guruge, S. (2007). The influence of gender, racial, social, and economic inequalities on the production of and responses to intimate partner violence in the post-migration context [Doctoral dissertation, University of Toronto, Ontario, Canada]. Library and Archives Canada. https://central.bac-lac.gc.ca/.item?id =NR28053&op=pdf Guruge, S., Birpreet, B., & Samuels-Dennis, J. (2015). Health status and health determinants of older women in Canada: A scoping review. Journal of Aging Research, 2015, 1–12. https://doi.org/10.1155/2015/393761 Guruge, S., & Humphreys, J. (2009). Barriers that affect abused immigrant women’s access to and use of formal social supports. Canadian Journal of Nursing Research, 41(3), 64–84. https://pubmed.ncbi.nlm.nih .gov/19831055/ Guruge, S., & Kanthasamy, P. (2010). Older women’s perceptions of and response to abuse and neglect in the postmigration context. Wellesley Institute. http://www.wellesleyinstitute.com/wp-content/uploads/2010/04 /Older_womens_perceptions_final_report.pdf Guruge, S., Kanthasamy, P., Jokarasa, J., Wan, T. Y. W., Chinichian, M., Shirpak, K. R., Paterson, P., & Sathananthan, S. S. (2010). Older women speak about abuse and neglect in the post migration context. Women’s Health & Urban Life, 9(2). https://tspace.library.utoronto.ca/handle/1807/25498 Guruge, S., Kanthasamy, P., & Santos, J. E. (2008). Addressing older women’s health: A pressing need. In S. Guruge & E. Collins (Eds.), Working with women: Issues and strategies for mental health professionals (pp. 235–256). Centre for Addiction and Mental Health.

Elder Abuse as a Health Issue Guruge, S., & Khanlou, N. (2004). Intersectionalities of influence: Researching health of immigrant and refugee women. Canadian Journal of Nursing Research, 36(3), 32–47. https://pubmed.ncbi.nlm.nih .gov/15551661/ Guruge, S., Khanlou, N., & Gastaldo, D. (2010). The production of intimate male partner violence in the migration process: Intersections of gender, race, and class. Journal of Advanced Nursing, 66(1), 103–113. https://doi.org/10.1111/j.1365-2648.2009.05184.x Guruge, S., Tiwari, A., & Baty, M. (2010). International perspectives on family violence. In J. Humphreys & J. Campbell (Eds.), Family Violence and Nursing Practice (2nd ed., pp. 411–436). Lippincott Williams & Wilkins. Hankivsky, O. (Ed.). (2011). Health inequities in Canada: Intersectional framework and practices. UBC Press. Hankivsky, O., & Christoffersen, A. (2008). Intersectionality and the determinants of health: a Canadian perspective. Critical Public Health, 18(3), 271–283. https://doi.org/10.1080/09581590802294296 Hull, D. (1979). Migration, adaptation, and illness: A review. Social Science & Medicine. Part A: Medical Psychology & Medical Sociology, 13, 25–36. https://doi.org/10.1016/0271-7123(79)90005-1 Johnson, H. (2006). Measuring violence against women. Statistical Trends 2006 (Catalogue No. 85-570-XIE). Statistics Canada. http://www.statcan.gc.ca/pub/85-570-x/85-570-x2006001-eng.pdf Kanagaratnam, P., Mason, R., Hyman, I., Manuel, L., Berman, H., & Toner, B. (2012). Burden of womanhood: Tamil women’s perceptions of coping with intimate partner violence. Journal of Family Violence, 27(7), 647–658. https://doi.org/10.1007/s10896-012-9461-1 Kinnon, D. (1999). An overview of Canadian research on immigration and health (Catalogue No. H21-149/ 1999E). Health Canada. http://publications.gc.ca/collections/Collection/H21-149-1999E.pdf Knig, J., & Leembruggen-Kallberg, E. (2006). Perspectives on elder abuse in Germany. Educational Gerontology, 32(1), 25–35. https://doi.org/10.1080/03601270500338591 Koehn, S., Spencer, C., & Hwang, E. (2010). Promises, promises: Cultural and legal dimensions of sponsorship for immigrant seniors. In D. Durst & M. MacLean (Eds.), Diversity and aging among immigrant seniors in Canada: Changing faces and greying temples (pp. 79–102). Detselig. Kosberg, J. (Ed.). (2007) Abuse of older men. Haworth Maltreatment & Trauma Press. Lachs, M. S., Williams, C. S., O’Brien, S., Pillemer, K. A., & Charlson, M. E. (1998). The mortality of elder mistreatment. Journal of the American Medical Association, 280(5), 428–432. https://doi.org/10.1001 /jama.280.5.428 Lai, D. W. (2004). Depression among elderly Chinese-Canadian immigrants from mainland China. Chinese Medical Journal-Beijing-English Edition, 117(5), 677–683. https://pubmed.ncbi.nlm.nih.gov/15161533/ Le, Q. K. (1997). Mistreatment of Vietnamese elderly by their families in the United States. Journal of Elder Abuse & Neglect, 9(2), 51–62. https://doi.org/10.1300/J084v09n02_05 Lofters, A. K., Hwang, S. W., Moineddin, R., & Glazier, R. H. (2010). Cervical cancer screening among urban immigrants by region of origin: A population-based cohort study. Preventive Medicine, 51(6), 509–516. https://doi.org/10.1016/j.ypmed.2010.09.014 MacKinnon, C. A. (1983). Feminism, Marxism, method, and the state: Toward feminist jurisprudence. Signs: Journal of Women in Culture and Society, 8(4), 635–658. https://doi.org/10.1086/494000 Mandell, N., Borras, J., & Phonepraseuth, J. (2018). Recent Canadian immigrant seniors: A literature review of settlement experiences and services: Knowledge synthesis report. CERIS; Immigration, Refugees and Citizenship Canada. http://www.niagaraknowledgeexchange.com/wp-content/uploads/sites/2/2018/10 /IWYS-Knowledge-Synthesis-Report-Seniors-report-Sept-2018.pdf Matsuoka, A., Guruge, S., Koehn, S., Beaulieu, M., & Ploeg, J., with Lithwick, M., Manuel, L., Mullings, D., Roger, K., Spencer, C., Tyyskä, V., Walsh, C., & Gomes, F. (2012/2013). Prevention of abuse of older women in the post-migration context in Canada. Canadian Review of Social Policy, 68/69, 107–120. https://crsp.journals.yorku.ca/index.php/crsp/article/download/34745/33136 McGibbon, E. (2009). Health and health care: A human rights perspective. In D. Raphael (Ed.), The social determinants of health (2nd ed., pp. 319–339). Canadian Scholar’s Press.

113

114

Sepali Guruge and Atsuko Matsuoka McGibbon, E., & McPherson, C. (2011). Applying intersectionality and complexity theory to address the social determinants of women’s health. Women’s Health & Urban Life, 10(1), 59–86. https://tspace.library .utoronto.ca/handle/1807/27217 Mckenzie, M., Conway, E., Hastings, A., Munro, M., & O’Donnell, C. (2013). Is “candidacy” a useful concept for understanding journeys through public services? A critical interpretive literature synthesis. Social Policy & Administration, 47(7), 806–825. https://doi.org/10.1111/j.1467-9515.2012 .00864.x Montminy, L. (2005). Older women’s experiences of psychological violence in their marital relationships. Journal of Gerontological Social Work, 46(2), 3–22. https://doi.org/10.1300/J083v46n02_02 Mutta, B., Kaur, A., Singh, R., & Singh, A. (2004). Building social capital in the Punjabi community: Elder abuse research. Final report. Punjabi Community Health Centre. http://morgan.ucs.mun.ca/~asingh/new _site/files/final_elder_indcomm.pdf Newbold, K. B., & Danforth, J. (2003). Health status and Canada’s immigrant population. Social science & medicine, 57(10), 1981–1995. https://doi.org/10.1016/S0277-9536(03)00064-9 Park, H. J. (2006). Scoping the issues of elder abuse among Asian migrants. In S. Tse, M. E., Hoque, K. Rasanathan, M. Chatterji, R. Wee, S. Garg, & Y. Ratnasabapathy (Eds.), Prevention, protection and promotion. Proceedings of the Second International Asian Health and Wellbeing Conference (pp. 50–56). University of Auckland. https://www.researchgate.net/profile/Samson_Tse/publication/233919926 _Prevention_protection_and_promotion/links/0fcfd50de5a57e9f56000000/Prevention-protection-and -promotion.pdf Perez, C. E. (2002). Health status and health behaviour among immigrants: Canadian community health survey – 2002 annual report. Health Reports, 13, 89. https://www150.statcan.gc.ca/n1/en/pub/82-003 -s/2002001/pdf/82-003-s2002005-eng.pdf Ploeg, J., Lohfeld, L., & Walsh, C. A. (2013). What is “elder abuse”? voices from the margin: The views of underrepresented Canadian older adults. Journal of Elder Abuse & Neglect, 25(5), 396–424. https://doi.org /10.1080/08946566.2013.780956 Provincial Health Services Authority. (2011). Towards reducing health inequities: A health system approach to chronic disease prevention. http://www.bccdc.ca/pop-public-health/Documents/TowardsReducing HealthInequitiesFinalDiscussionPape.pdf Raphael, D. (2004). Strengthening the social determinants of health: The Toronto charter for a healthy Canada. In D. Raphael (Ed.), The social determinants of health: Canadian perspectives (pp. 361–365). Canadian Scholar’s Press. Sanchez, Y. M. (1999). Elder mistreatment in Mexican American communities: The Nevada and Michigan experiences. In T. Tatara (Ed.), Understanding elder abuse in minority populations (pp. 67–78). Braun-Brumfield. Sinha, M. (2011). Family violence in Canada: A statistical profile (Catalogue no. 85-002-X). Statistics Canada. https://www150.statcan.gc.ca/n1/en/pub/85-002-x/2013001/article/11805-eng.pdf Spencer, C. (1996) Diminishing returns: An examination of financial abuse among seniors. Summit Institutional Repository. http://summit.sfu.ca/item/504 Spencer, C. (1999). Exploring the social and economic costs of abuse in later life. Health Canada; Family Violence Prevention Unit. Spencer, C. (2009). Environmental scan and critical analysis of elder abuse screening, Assessment and intervention tools for Canadian health-care providers. Public Health Agency of Canada. Statistics Canada. (2011). Canadian community health survey 2009 annual component. http://www23.statcan .gc.ca/imdb/p2SV.pl?Function=getSurvey&SDDS=3226 Statistics Canada. (2016a). Focus on geography series, 2016 census. https://www12.statcan.gc.ca/census -recensement/2016/as-sa/fogs-spg/Facts-can-eng.cfm?Lang=Eng&GK=CAN&GC=01&TOPIC=7 Statistics Canada. (2016a). Focus on Geography Series, 2016 Census. https://www12.statcan.gc.ca/census -recensement/2016/as-sa/fogs-spg/Facts-can-eng.cfm?Lang=Eng&GK=CAN&GC=01&TOPIC=7

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

115

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

Indigenous Women’s Health in Canada

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

117

118

Billie Allan and Janet Smylie

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).

Indigenous Women’s Health in Canada

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.

119

120

Billie Allan and Janet Smylie

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

121

122

Billie Allan and Janet Smylie

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

Indigenous Women’s Health in Canada

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

123

124

Billie Allan and Janet Smylie

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.

125

126

Billie Allan and Janet Smylie

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

127

128

Billie Allan and Janet Smylie

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

Indigenous Women’s Health in Canada

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

129

130

Billie Allan and Janet Smylie

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

131

132

Billie Allan and Janet Smylie

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

Indigenous Women’s Health in Canada

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

133

134

Billie Allan and Janet Smylie

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

Indigenous Women’s Health in Canada

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.

135

136

Billie Allan and Janet Smylie

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).

137

138

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.

Indigenous Women’s Health in Canada Arriagata, P. (2016). First Nations, Métis and Inuit women (Catalogue No. 89-503-X). Statistics Canada. https://www150.statcan.gc.ca/n1/pub/89-503-x/2015001/article/14313-eng.htm Association of Ontario Midwives. (2015). Report to the Ministry of Health and Long Term Care from the June 22, 2015 meeting regarding the extension of funding for Aboriginal midwives in Ontario. Submitted to the MOHLTC on October 15, 2015. http://docplayer.net/59441901-The-extension-of-funding-for-aboriginal -midwives-ams-in-ontario.html. Association of Ontario Midwives. (2019). Indigenous midwifery. https://www.ontariomidwives.ca/indigenous -midwifery Atlantic Centre of Excellence for Women’s Health. (2009). Aboriginal women and obesity in Canada: A review of the literature. https://cdn.dal.ca/content/dam/dalhousie/pdf/diff/ace-women-health/live /ACEWH_aboriginal_women_obesity_canada_lit_review_July_09.pdf Bartlett, J. G., Iwasaki, Y., Gottlieb, B., Hall, D., & Mannell, R. (2007). Framework for Aboriginalguided decolonizing research involving Métis and First Nations persons with diabetes. Social Science & Medicine, 65(11), 2371–2382. https://doi.org/10.1016/j.socscimed.2007.06.011 Baskin, C. (2007). Aboriginal youth talk about structural determinants as the causes of their homelessness. First Peoples Child & Family Review, 3(3), 31–42. https://doi.org/10.7202/1069395ar Billson, J. (2006). Shifting gender regimes: The complexities of domestic violence among Canada’s Inuit. Etudes/Inuit/Studies, 30(1), 69–88. https://doi.org/10.7202/016150ar Blondin-Perrin, A. (2009). My heart shook like a drum: What I learned at the Indian mission schools, Northwest Territories. Borealis Press. Bombay, A., Matheson, K., & Anisman, H. (2014). Origins of lateral violence in Aboriginal communities: A preliminary study of student-to-student abuse in Indian residential school. Aboriginal Healing Foundation. http://www.ahf.ca/downloads/lateral-violence-english.pdf Bourassa, C., & Peach, I. (2009). Reconceiving notions of Aboriginal identity. Institute on Governance. Bourassa, C., McKay-McNabb, K., & Hampton, M. (2005). Racism, sexism and colonialism: The impact on the health of Aboriginal women in Canada. Canadian Woman Studies, 24(1), 55–58. https://cws.journals .yorku.ca/index.php/cws/article/viewFile/6172/5360 Bourgeois, C. (2020, February 13). Indigenous health policy practice: The Toronto Birth Centre [Guest lecture]. SOCW554: Indigenous policy and practice. University of Victoria, Victoria, BC. Boyer, Y. (2006). First Nations, Métis and Inuit women’s health. Discussion paper series in Aboriginal health: Legal issues (No. 4). Native Law Centre; University of Saskatchewan/National Aboriginal Health Organization. Brennan, R. J. (2012, June 29). Inuit communities finally get compensation for dog slaughter. The Toronto Star. https://www.thestar.com/news/canada/2012/06/29/inuit_communities_finally_get_compensation _for_dog_slaughter.html Browne, A., Smye, V., Rodney, P., Tang, S., Mussell, B., & O’Neil, J. (2011). Access to primary care from the perspective of Aboriginal patients at an urban emergency department. Qualitative Health Research, 21(3), 333–348. https://doi.org/10.1177/1049732310385824 Canadian Aboriginal AIDS Network (2011). Fact sheet on HIV and AIDS Aboriginal women and girls in Canada. http://caan.ca/wp-content/uploads/2012/05/Womens-Fact-Sheet-EN.pdf Canadian Aboriginal AIDS Network & University of Ottawa. (2014, January 29). Visioning health – Kinaajiwimi: The essence of who we are is beautiful [Video]. YouTube. https://www.youtube.com/watch?v=verecSN6x_A Canadian Feminist Alliance for International Action (CFAIA). (2003). Canada’s failure to act: Women’s inequality deepens: Submission of the Canadian Feminist Alliance for International Action to the United Nations Committee on the Elimination of Discrimination Against Women on the occasion of the Committee’s review of Canada’s 5th report. http://www.iwrp.org/pdf/fafia_report.pdf Castellano, M. B. (2000). Updating Aboriginal traditions of knowledge. In B. L. Hall, G. J. Sefa Dei, & D. Goldin Rosenberg (Eds.), Indigenous knowledges in global context: Multiple readings of our world (pp. 21–37). OISE; University of Toronto Press. Castellano, M. B. (2004). Ethics of Aboriginal research. Journal of Aboriginal Health, 1, 98–114. https://doi .org/10.3138/ijih.v1i1.28935

139

140

Billie Allan and Janet Smylie Centre de Santé Inuulitsivik. (n.d.). Midwives. https://www.inuulitsivik.ca/healthcare-and-services /professional-services/midwives/?lang=en Clark, N. (2013). Perseverance, determination and resistance: An Indigenous intersectional policy analysis of violence in the lives of Aboriginal girls and women. In O. Hankivsky (Ed.), Intersectional-based policy analysis framework (pp. 133–158). Institute for Intersectionality Research and Policy; Simon Fraser University. Clark, N. (2016a). Shock and awe: Trauma as the new colonial frontier. Humanities, 5(1), 14. https://doi .org/10.3390/h5010014 Clark, N. (2016b). Red intersectionality and violence-informed witnessing praxis with Indigenous girls. Girlhood Studies, 9(2), 46–64. https://doi.org/10.3167/ghs.2016.090205 Clarkson, A. (2009). The Cedar project: Exploring the health related correlates of child welfare and incarceration among young Aboriginal people in two Canadian cities [Master’s thesis, University of British Columbia]. Collections Canada. https://www.collectionscanada.gc.ca/obj/thesescanada/vol1/BVAU/TC-BVAU -12564.pdf Crenshaw, K. (1989). Demarginalizing the intersection of race and sex: A Black Feminist critique of antidiscrimination doctrine, feminist theory and the antiracist politics. University of Chicago Legal Forum, 1989(1), Article 8. https://chicagounbound.uchicago.edu/uclf/vol1989/iss1/8 Crenshaw, K. (1991). Mapping the margins: Intersectionality, identity politics, and violence against women of color. Stanford Law Review, 43(6), 1241–1299. Crowder, J. (2014, Nov 7). Private Members’ business: Bill C-626: An Act to amend the Statistics Act (appointment of chief statistician and long-form census). Canada. Parliament. House of Commons. Hansard, 141, 41st Parliament, 2nd Session. http://www.parl.gc.ca/HousePublications/Publication.aspx ?Language=E&Mode=1&Parl=41&Ses=2&DocId=6771190 Cunningham, M. (2009). Health. In United Nations (Ed.), State of the world’s Indigenous peoples (pp. 155–187). United Nations. Czyzewski, K. (2011). Colonialism as a broader social determinant of health. The International Indigenous Policy Journal, 2(1), Article 5. http://ir.lib.uwo.ca/iipj/vol2/iss1/5. https://doi.org/10.18584/iipj.2011.2.1.5 Dei, G. J. S., & Asgharzadeh, A. (2001). The power of social theory: The anti-colonial discursive framework. The Journal of Educational Thought ( JET), 297–323. https://doi.org/10.11575/jet.v35i3.52749 Denison, J., Varcoe, C., & Browne, A. (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 Dewailly, É., Ayotte, P., Bruneau, S., Lebel, G., Levallois, P., & Weber, J. P. (2001). Exposure of the Inuit population of Nunavik (Arctic Quebec) to lead and mercury. Archives of Environmental Health: An International Journal, 56(4), 350–357. https://doi.org/10.1080/00039890109604467 Dion Stout, M., & Kipling, G. (2003). Aboriginal people, resilience and the residential school legacy. Aboriginal Healing Foundation. http://www.ahf.ca/downloads/resilience.pdf Dion Stout, M., Kipling, G. D., & Stout, R. (2001). Aboriginal women’s health research synthesis project: Final report. Canadian Women’s Health Network. Epoo, B., Stonier, J., Van Wagner, V., & Harney, E. (2012). Learning midwifery in Nunavik: Communitybased education for Inuit midwives. Pimatisiwin: A Journal of Aboriginal and Indigenous Community Health, 10(3), 283–299. https://journalindigenouswellbeing.com/wp-content/uploads/2013/02 /03EpooStonier.pdf Epoo, B., & Van Wagner, V. (2005, July). Bringing birth back to the community: Midwifery in the Inuit villages of Nunavik [Keynote address]. ICM 27th Congress, Brisbane, Australia. Ernst, J. (2013). Brief review of threats to Canada’s groundwater from the oil and gas industry’s methane migration and hydraulic fracturing. Ernst Environmental Services. http://www.ernstversusencana.ca/wp -content/uploads/2013/06/Brief-review-of-threats-to-Canadas-groundwater-from-oil-gas-industrys -methane-migration-and-hydraulic-fracturing-v4.pdf

Indigenous Women’s Health in Canada Evans-Campbell, T., Fredriksen-Goldsen, K. I., Walters, K. L., & Stateley, A. (2007). Caregiving experiences among American Indian Two-Spirit men and women. Journal of Gay & Lesbian Social Services, 18(3–4), 75–92. https://doi.org/10.1300/J041v18n03_05 Fiske, J., & 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 Fournier, S., & Crey, E. (1997). Stolen from our embrace: The abduction of First Nations children and the restoration of Aboriginal communities. Douglas & McIntyre. Ghosh, H., & Gomes, J. (2012). Type 2 diabetes among Aboriginal Peoples in Canada: A focus on direct and associated risk factors. Pimatisiwin, 9(2), 245–275. http://www.pimatisiwin.com/uploads/jan_20112 /01GhoshGomes.pdf Goodman A., Fleming, K., Markwick, N., Morrison, T., Lagimodiere, L., Kerr, T., & Western Aboriginal Harm Reduction Society. (2017). “They treated me like crap and I know it was because I was Native”: The healthcare experiences of Aboriginal peoples living in Vancouver’s inner city. Social Science & Medicine, 178, 87–94. https://doi.org/10.1016/j.socscimed.2017.01.053 Government of Canada. (2013). Backgrounder: Aboriginal offenders – A critical situation. Office of the Correctional Investigator. http://www.oci-bec.gc.ca/cnt/rpt/oth-aut/oth-aut20121022info-eng.aspx Government of Canada. (2018). Map – Tuberculosis in Inuit Nunangat. https://www.sac-isc.gc.ca/DAM/DAM -ISC-SAC/DAM-HLTH/STAGING/texte-text/diseases-tuberculosis-map-inuit-nunangat _1570715734594_eng.pdf Government of Canada. (2019). Reducing the number of Indigenous children in care. https://www.sac-isc.gc.ca /eng/1541187352297/1541187392851 Government of Nunavut. (2008). Developing healthy communities: A public health strategy for Nunavut, 2008–2013. Department of Health & Social Services. https://www.gov.nu.ca/sites/default/files/files /Public%20Health%20Strategy%20-%20English%20final.pdf Grace, S. L. (2003). A review of Aboriginal women’s physical and mental health status in Ontario (Commentary). Canadian Journal of Public Health, 94(3), 173–175. https://doi.org/10.1007/BF03405060 Gracey, M., & King, M. (2009). Indigenous health part 1: Determinants and disease patterns. The Lancet, 374(9683), 65–75. https://doi.org/10.1016/S0140-6736(09)60914-4 Graham, H., & Stamler, L. L. (2010). Contemporary perceptions of health from an Indigenous (Plains Cree) perspective. International Journal of Indigenous Health, 6(1), 6–17. https://doi.org/10.18357/ijih61201012341 Greenwood, M., & de Leeuw, S. (2012). Social determinants of health and the future well-being of Aboriginal children in Canada. Paediatrics & Child Health, 17(7), 381–384. https://www.ncbi.nlm.nih .gov/pmc/articles/PMC3448539/ Greenwood, M., de Leeuw, S., Lindsay, N. M., & Reading, C. (Eds.). (2015). Determinants of Indigenous health: Beyond the social. Canadian Scholars’ Press. Halseth, R. (2013). Aboriginal women in Canada: Gender, socio-economic determinants of health, and initiatives to close the wellness-gap. National Collaborating Centre for Aboriginal Health. https://www.ccnsa-nccah .ca/docs/determinants/RPT-AboriginalWomenCanada-Halseth-EN.pdf Hanson, E. (2009). Marginalization of Aboriginal women: A brief history of the marginalization of Aboriginal women in Canada. First Nations & Indigenous Studies, University of British Columbia. http:// indigenousfoundations.web.arts.ubc.ca/marginalization_of_aboriginal_women/. Hanson, Y. (2011). Recipes for food insecurity: Women’s stories from Saskatchewan. Prairie Women’s Health Centre of Excellence. http://www.pwhce.ca/pdf/recipesForHunger.pdf Haworth-Brockman, M. J., Bent, K., & Havelock, J. (2009). Health research, entitlements and health services for First Nations and Métis women in Manitoba and Saskatchewan. International Journal of Indigenous Health, 4(2), 14–23. https://doi.org/10.3138/ijih.v4i2.28969 Healey, G. (2008). Tradition and culture: An important determinant of Inuit women’s health. International Journal of Indigenous Health, 4(1), 25–33. https://doi.org/10.18357/ijih41200812312

141

142

Billie Allan and Janet Smylie Healey, G. (2016). (Re)settlement, displacement, and family separation: Contributors to health inequality in Nunavut. Northern Review, (42), 47–68. https://doi.org/10.22584/nr42.2016.004 Healey, G., & Meadows, L. M. (2007). Inuit women’s health in Nunavut, Canada: A review of the literature. International Journal of Circumpolar Health, 66(3), pp. 199–214. https://doi.org/10.3402/ijch.v66i3.18256 Health Canada. (2003). Arthritis in Canada: An ongoing challenge. http://www.acreu.ca/pdf/Arthritis_in _Canada.pdf Houd, S., Qinuajuak, J., & Epoo, B. (2004). The outcome of perinatal care in Inukjuak, Nunavik, Canada 1998–2002. International Journal of Circumpolar Health, 63(Suppl. 2), 239–241. https://doi.org/10.3402 /ijch.v63i0.17909 Hunt, S. (2016). An introduction to the health of Two-Spirit people: Historical, contemporary and emergent issues. National Collaborating Centre for Indigenous Health. https://www.ccnsa-nccah.ca/docs /emerging/RPT-HealthTwoSpirit-Hunt-EN.pdf Huseman, J., & Short, D. (2012). “A slow industrial genocide”: Tar sands and the Indigenous peoples of northern Alberta. The International Journal of Human Rights, 16(1), 216–237. https://doi.org/10.1080 /13642987.2011.649593 Indian Act, Revised Statutes of Canada (1985, c. I-5). http://www.canlii.org/en/ca/laws/stat/rsc-1985-c-i-5 /latest/rsc-1985-c-i-5.html Inuit Language Protection Act, SNu 2008, c 17. https://www.canlii.org/en/nu/laws/stat/snu-2008-c-17/latest /snu-2008-c-17.html Inuit Tapiriit Kanatami. (1999). 5000 years of heritage and history. https://www.itk.ca/wp-content/uploads /2016/07/5000YearHeritage_0.pdf Inuit Tapiriit Kanatami. (2014). Social determinants of health in Canada. https://www.itk.ca/wp-content /uploads/2016/07/ITK_Social_Determinants_Report.pdf Inuit Tapiriit Kanatami. (2018). Inuit statistical profile 2018. https://www.itk.ca/wp-content/uploads/2018 /08/Inuit-Statistical-Profile.pdf “Kimberlé Crenshaw on intersectionality, more than two decades later” (2017, June 8). Columbia Law School News & Stories. https://www.law.columbia.edu/news/archive/kimberle-crenshaw-intersectionality-more -two-decades-later King, M., Smith, A., & Gracey, M. (2009). Indigenous health part 2: The underlying causes of the health gap. The Lancet, 374(9683), 76–85. https://doi.org/10.1016/S0140-6736(09)60827-8 Kirmayer, L. J., Brass, G. M., Holton, T., Paul, K., Simpson, C., & Tait, C. (2007). Suicide among Aboriginal people in Canada. Aboriginal Healing Foundation. Knockwood, I., & Thomas, G. (1992). Out of the depths: The experiences of Mi’kmaw children at the Indian Residential School at Shubenacadie, Nova Scotia. Roseway. Kornelsen, J., Kotaska, A., Waterfall, P., Willie, L., & Wilson, D. (2010). The geography of belonging: The experience of birthing at home for First Nations women. Health & place, 16(4), 638–645. https://doi .org/10.1016/j.healthplace.2010.02.001 Kuniliusie, M. (2015). Arctic cotton and the stratified identity of an Inuk educational leader. In. F. Walton & D. O’Leary (Eds.), Sivumut: Towards the future together. Inuit women educational leaders in Nunavut and Nunavik (pp. 57–70). Women’s Press. Kurtz, D. L., Nyberg, J. C., Van Den Tillaart, S., & Mills, B. (2008). Silencing of voice: An act of structural violence urban Aboriginal women speak out about their experiences with health care. International Journal of Indigenous Health, 4(1), 53–63. https://doi.org/10.18357/ijih41200812315 Kusugak, A. (2013). Pijunnautitaaqpaalliqsimaliqtut: Building confidence through cultural and literacy kill development [Master’s thesis, University of Prince Edward Island]. Island Scholar Robertson Library. https://www.islandscholar.ca/islandora/object/ir%3A10613/datastream/PDF/download Lalonde, A., Butt, C., & Bucio, C. (2009). Maternal health in Canadian Aboriginal communities: Challenges and opportunities. Journal of Obstetrics & Gynaecology Canada, 31(10), 956–962. https://doi .org/10.1016/S1701-2163(16)34325-0

Indigenous Women’s Health in Canada Lambden, J., Receveur, O., Marshall, J., & Kuhnlein, H. V. (2006). Traditional and market food access in Arctic Canada is affected by economic factors. International Journal of Circumpolar Health, 65, 331–340. https://doi.org/10.3402/ijch.v65i4.18117 LaRoque, E. (1994). Violence in Aboriginal communities. Health Canada. http://publications.gc.ca/collections /Collection/H72-21-100-1994E.pdf Latimer, J., & Foss, L. C. (2004). One-day snapshot of Aboriginal youth in custody across Canada: Phase II. Research and Statistics Division, Department of Justice Canada, Government of Canada. https://www .justice.gc.ca/eng/rp-pr/cj-jp/yj-jj/yj2-jj2/index.html Lawford, K., & Giles, A. R. (2012). Marginalization and coercion: Canada’s evacuation policy for pregnant First Nations women live on reserves in rural and remote regions. Pimatisiwin: A Journal of Aboriginal Health, 10(3), 327–340. https://journalindigenouswellbeing.com/wp-content/uploads/2013/02/06 LawfordGiles.pdf Lawford, K. M., Giles, A. R., & Bourgeault, I. L. (2018). Canada’s evacuation policy for pregnant First Nations women: Resignation, resilience, and resistance. Women and Birth, 31(6), 479–488. https://doi.org /10.1016/j.wombi.2018.01.009 Leason, J. (2017). Exploring the complex context of Indigenous women’s maternity experiences in the Okanagan Valley, British Columbia by expanding on Aboriginal women’s responses to the Canadian Maternity Experiences Survey [Doctoral dissertation, University of British Columbia]. Open Collections. https://open.library .ubc.ca/media/download/pdf/24/1.0342345/2 Legacy of Hope Foundation. (n.d.). Where are the children? Reclaiming history: The residential school system in Canada. http://wherearethechildren.ca/en/timeline/research/ Malakieh, J. (2018, June 19). Adult and youth correctional statistics in Canada, 2016/2017 (Catalogue No. 85002-X). Statistics Canada. https://www150.statcan.gc.ca/n1/en/pub/85-002-x/2018001/article/54972 -eng.pdf?st=Pm4Vt1PR Matthysen, I. (2011). Ending violence against Aboriginal girls and women: Empowerment – a new beginning. A report of the Standing Committee on the Status of Women. House of Commons. http://publications.gc.ca /collections/collection_2011/parl/XC71-1-411-01-eng.pdf McComber, L., & Partridge, S. (Eds.). (2010). Arnait Nipingit: Inuit women in leadership and governance. Language and Culture Program of Nunavut Arctic College. McDermott-Levy, R., Kaktins, N., & Sattler, B. (2013). Fracking, the environment and health. AJN American Journal of Nursing, 113(6), 45–51. https://doi.org/10.1097/01.NAJ.0000431272.83277.f4 Midwifery Act, 1991, S. O. 1991, c. 31. Miller, J. (1996). Shingwauk’s Vision: A history of Native residential schools. University of Toronto Press. Morgan, C. (2008). The Arctic: Gender issues. InfoSeries (PRB 08-09E). Library of Parliament. http:// publications.gc.ca/collections/collection_2010/bdp-lop/prb/prb0809-eng.pdf Mowbray, M. (Ed.). (2007). Social determinants and Indigenous health: The International experience and its policy implications. World Health Organization Commission on Social Determinants of Health. National Aboriginal Council of Midwives (NACM). (2012). Mission and values. https://indigenousmidwifery .ca/mission-vision-values/ National Collaborating Centre for Aboriginal Health. (2012). The state of knowledge of Aboriginal health: A review of Aboriginal public health in Canada. 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, Volume 1a. https://www.mmiwg-ffada.ca/wp-content/uploads/2019/06/Final_Report_Vol_1a.pdf Native Women’s Association of Canada. (2007). Violence against Aboriginal women and girls: An issue paper. http://caid.ca/VioAboWom2007.pdf Nettle, D. (1999). Linguistic diversity of the Americas can be reconciled with a recent colonization. Proceedings of the National Academy of Sciences of the United States of America, 96(6), 3325–3329. https:// doi.org/10.1073/pnas.96.6.3325

143

144

Billie Allan and Janet Smylie Northern Ontario Women’s Services Outreach & Partnership Enhancement. (2011). Aboriginal women’s initiative literature review: A review of literature on intergenerational trauma, mental health, violence against women, addictions and homelessness among Aboriginal women of the North. YWCA Sudbury/YWCA Canada. https://www.deslibris.ca/ID/231481. O’Donnell, V., & Wallace, S. (2014). First Nations, Métis and Inuit women. Women in Canada: A gender-based statistical report (Catalogue No. 89-503-X). Statistics Canada. https://www150.statcan.gc.ca/n1/en/pub /89-503-x/2010001/article/11442-eng.pdf?st=188R0JWA O’Driscoll, T., Kelly, L., Payne, L., St. Pierre-Hansen, N., Cromarty, H., Minty, B., & Linkewich, B. (2011). Delivering away from home: The perinatal experiences of First Nations women in northwestern Ontario. Canadian Journal of Rural Medicine, 16(4), 126–130. https://pubmed.ncbi.nlm.nih.gov/21955339/ O’Neil, J. D., Reading, J. R., & Leader, A. (1998). Changing the relations of surveillance: The development of a discourse of resistance in Aboriginal epistemology. Human Organization, 57(2), 230–237. https:// doi.org/10.17730/humo.57.2.b7628vwvg7q127m8 Osborn, S. G., Vengosh, A., Warner, N. R., & Jackson, R. B. (2011). Methane contamination of drinking water accompanying gas-well drilling and hydraulic fracturing. Proceedings of the National Academy of Sciences, 108(20), 8172–8176. https://doi.org/10.1073/pnas.1100682108 Oxford Dictionaries. (n.d.). Colonize. In OxfordDictionaries.com dictionary. Retrieved 2014 from http://www .oxforddictionaries.com/definition/english/colonize Pauktuutit Inuit Women of Canada. (2006). The Inuit way: A guide to Inuit culture. Pauktuutit Inuit Women of Canada. (2005, April 30). Nuluaq project: National Inuit strategy for abuse prevention. Research report: Applying Inuit cultural approaches in the prevention of family violence and abuse. https://www.pauktuutit.ca/wp-content/uploads/InuitAbusePrevention_e.pdf Pauktuutit Inuit Women of Canada. (2019). Understanding the needs of urban Inuit women. Final report. https://www.pauktuutit.ca/wp-content/uploads/358996508-Final-Report-UAS-Urban-Research -April-2017.pdf Pauktuutit Inuit Women of Canada. (2019). Study of gender-based violence and shelter service needs across Inuit Nunangat, Final Report March 2019. https://www.pauktuutit.ca/wp-content/uploads/PIWC-Rpt-GBV -and-Shelter-Service-Needs-2019-03.pdf Pelletier, D. (2016). Meaning engagement of HIV-positive Indigenous women in research – they have to want to be there! Canadian Aboriginal AIDS Network Newsletter, Summer. caan.ca/en/meaningful -engagement-of-hiv-positive-indigenous-women-in-research-they-have-to-want-to-be-there/ Phillips-Beck, W. (2010). Development of a framework of improved childbirth care for First Nation women in Manitoba: A First Nation family centred approach [Master’s thesis, University of Manitoba]. Phoenix Sinclair Commission. http://www.phoenixsinclairinquiry.ca/exhibits/exhibit132.pdf Price, J. (2007). Tukisivallialiqtakka: The things I have now begun to understand: Inuit governance, Nunavut and the kitchen consultation model [Master’s thesis, University of Victoria]. UVicSpace. https://dspace.library .uvic.ca/handle/1828/987 Public Health Agency of Canada. (2010a). HIV/AIDS epi update. http://www.phac-aspc.gc.ca/aids-sida /publication/epi/2010/8-eng.php Public Health Agency of Canada. (2010b). Current evidence on factors that impact Aboriginal peoples’ resiliency and vulnerability to HIV/AIDS. In Population-specific HIV/AIDS status report: Aboriginal peoples (pp. 33–56). https://www.catie.ca/sites/default/files/26344.pdf Putulik, M. (2015). Piniaqsarniq: Practice to achieve. In F. Walton & D. O’Leary (Eds.), Sivumut: Towards the future together. Inuit women educational leaders in Nunavut and Nunavik (pp. 71–87). Women’s Press. Qikiqtani Inuit Association. (2010). QTC final report: Achieving Saimaqatigiingniq. Qikiqtani Truth Commission thematic reports and special studies 1950–1975. Inhabit Media. https://www.qtcommission.ca /sites/default/files/public/thematic_reports/thematic_reports_english_final_report.pdf Reading, J. (2009). A life course approach to the social determinants of health for Aboriginal Peoples. In W. J. Keon & L. Pépin (Eds.), A healthy, productive Canada: A determinant of health approach (pp. A1–144). Senate Subcommittee on Population and Health.

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

145

146

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

147

CHAPTER SIX

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

Reproductive Politics

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.

149

150

Holly A. Mckenzie

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

Reproductive Politics

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

151

152

Holly A. Mckenzie

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.

154

Holly A. Mckenzie

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

155

156

Holly A. Mckenzie

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

157

158

Holly A. Mckenzie

• 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

159

160

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/

161

This page intentionally left blank 

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.

166

Colleen Varcoe and Holly A. Mckenzie

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.

Decolonizing Research

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

167

168

Colleen Varcoe and Holly A. Mckenzie

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

Decolonizing Research

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

169

170

Colleen Varcoe and Holly A. Mckenzie

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

Decolonizing Research

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

171

172

Colleen Varcoe and Holly A. Mckenzie

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).

Decolonizing Research

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.

173

174

Colleen Varcoe and Holly A. Mckenzie

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

Decolonizing Research

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

175

176

Colleen Varcoe and Holly A. Mckenzie

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.

Decolonizing Research

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

177

178

Colleen Varcoe and Holly A. Mckenzie

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?

NOTE 1 The term trans* recognizes the multiple ways people embody and express transgenderism and gender variance (Halberstam, 2016). REFERENCES Absolon, K. E. (2011). Kaandossiwin: How we come to know. Fernwood Publishing. Abramsky, T., Watts, C. H., Garcia-Moreno, C., Devries, K., Kiss, L., Ellsberg, M., Jansen, H. A. F. M., & Heise, L. (2011). What factors are associated with recent intimate partner violence? Findings from the WHO multi-country study on women’s health and domestic violence. BMC Public Health, 11(1), 109–125. https://doi.org/10.1186/1471-2458-11-109 Adam, B. A. (2015, November 17). Saskatchewan women pressured to have tubal ligations. Saskatoon StarPhoenix, p. A1. Anderson, K. (2000). A recognition of being: Reconstructing native womanhood. Second Story Press. Anderson, K. (2011). Life stages and Native women: Memory, teachings, and story medicine. University of Manitoba Press. Ashley, F. (2018). Don’t be so hateful: The insufficiency of anti-discrimination and hate crime laws in improving trans well-being. University of Toronto Law Journal, 68(1), 1–36. https://doi.org/10.3138/utlj.2017-0057 Auditor General of Canada. (2008). First Nations child and family services program – Indian and Northern Affairs Canada report of the Auditor General of Canada to the House of Commons. http://www.oag-bvg.gc.ca/internet /English/parl_oag_200805_04_e_30700.html

Decolonizing Research Auditor General of Canada. (2011). Programs for First Nations reserves. Status report of the Auditor General of Canada to the House of Commons. http://www.oag-bvg.gc.ca/internet/English/parl_oag_201106_04_e_35372.html Barrett, B. J., & Sheridan, D. V. (2017). Partner violence in transgender communities: What helping professionals need to know. Journal of GLBT Family Studies, 13(2), 137–162. https://doi.org/10.1080 /1550428X.2016.1187104 Barrett, B. J., & St. Pierre, M. (2013). Intimate partner violence reported by lesbian-, gay-, and bisexualidentified individuals living in Canada: An exploration of within-group variations. Journal of Gay & Lesbian Social Services, 25(1), 1–23. https://doi.org/10.1080/10538720.2013.751887 Baydala, A., Placsko, C., Hampton, M., Bourassa, C., & McKay-McNabb, K. (2006). A narrative of research with, by, and for Aboriginal peoples. Pimatisiwin: A Journal of Aboriginal & Indigenous Community Health, 4(1), 47–65. https://journalindigenouswellbeing.com/a-narrative-of-research-with-by-and-for -aboriginal-peoples-2/ Beaumonis, Z., & Bond-Theriault, C. (Eds.). (2017). Queering reproductive justice: A toolkit. National LGBTQ Task Force. Berman, H., Mulcahy, G. A., Forchuk, C., Edmunds, K. A., Haldenby, A., & Lopez, R. (2009). Uprooted and displaced: A critical narrative study of homeless, Aboriginal, and newcomer girls in Canada. Issues in Mental Health Nursing, 30(7), 418–430. https://doi.org/10.1080/01612840802624475 Bingham, B., Leo, D., Zhang, R., Montaner, J., & Shannon, K. (2014). Generational sex work and HIV risk among Indigenous women in a street-based urban Canadian setting. Culture, Health & Sexuality, 16(4), 440–452. https://doi.org/10.1080/13691058.2014.888480 Bird, S. E. (1999). Gendered construction of the American Indian in popular media. Journal of Communication, 49(3), 61–83. https://doi.org/10.1111/j.1460-2466.1999.tb02805.x 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 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 _BoyerandBartlett_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 Browne, A. J., Smye, V. L., & Varcoe, C. (2005). The relevance of postcolonial theoretical perspectives to research in Aboriginal health. Canadian Journal of Nursing Research, 37(4), 16–37. https://cjnr.archive.mcgill .ca/article/view/1969 Brownridge, D. A. (2008). Understanding the elevated risk of partner violence against Aboriginal women: A comparison of two nationally representative surveys of Canada. Journal of Family Violence, 23(5), 353–367. https://doi.org/10.1007/s10896-008-9160-0 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. (2007). CIHR guidelines for health research involving Aboriginal people (2007–2010). http://www.cihr-irsc.gc.ca/e/29134.html Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, & Social Sciences and Humanities Research Council of Canada. (2012). Tri-council policy statement: Ethical conduct for research involving humans. https://ethics.gc.ca/eng/policy-politique_tcps2-eptc2_2018.html Cano, J. K., & Foster, A. M. (2016). “They made me go through like weeks of appointments and everything:” Documenting women’s experiences seeking abortion care in Yukon territory, Canada. Contraception, 94(5), 489–495. https://doi.org/10.1016/j.contraception.2016.06.015 Castellano, M. B., & Reading, J. R. (2010). Policy writing as dialogue: Drafting an Aboriginal chapter for Canada’s Tri-Council policy statement: Ethical conduct for research involving humans. The International Indigenous Policy Journal, 1(2). https://doi.org/10.18584/iipj.2010.1.2.1

179

180

Colleen Varcoe and Holly A. Mckenzie Caxaj, C., Berman, H., Restoule, J. P., Varcoe, C., & Ray, S. L. (2013). Promises of peace and development: Mining and violence in Guatemala. Advances in Nursing Science, 36(3), 213–228. https://doi.org/10.1097 /ANS.0b013e31829edd21 Caxaj, C., Berman, H., Varcoe, C., Ray, S. L., & Restoulec, J.-P. (2014). Gold mining on Mayan-Mam territory: Social unravelling, discord and distress in the western highlands of Guatemala. Social Science & Medicine, 111, 50–57. https://doi.org/10.1016/j.socscimed.2014.03.036 Cender, L. M. (2018). Prenatal screening and the diagnoses of fetal anomalies: A deconstruction of power/ knowledge, discourse and agency in antenatal care [Doctoral dissertation, University of British Columbia]. Open Collection. https://open.library.ubc.ca/soa/cIRcle/collections/ubctheses/24/items/1.0375796 Chilisa, B. (2012). Indigenous research methodologies. SAGE Publications. Clark, N. (2016a). Red intersectionality and violence-informed witnessing praxis with Indigenous girls. Girlhood Studies, 9(2), 46–64. https://doi.org/10.3167/ghs.2016.090205 Clark, N. (2016b). Shock and awe: Trauma as the new colonial frontier. Humanities, 14(5). https://doi.org /10.3390/h5010014 Clark, N. (2017). Cu7 me7 q’wele’wu-kt. “Come on, let’s go berry-picking.” Revival of Secwepemc wellness approaches for healing Indigenous child and youth experiences of violence [Doctoral dissertation, Simon Fraser University, Vancouver]. Summit Institutional Repository. http://summit.sfu.ca/system/files/iritems1 /18083/etd10563_NClark.pdf Clark, N., & Hunt, S. (2011). Navigating the crossroads: Exploring rural young women’s experiences of health using an intersectional framework. In O. Hankivsky (Ed.), Health inequities in Canada: Intersectional frame-works and practices (pp. 131–146). UBC Press. Code, L. (2003). Encyclopedia of feminist theories. Routledge. Connell, R. (2015). Meeting at the edge of fear: Theory on a world scale. Feminist Theory, 16(1), 49–66. https://doi.org/10.1177/1464700114562531 Cook, E. D., & Howe, D. (2004). Aboriginal languages of Canada. In W. O’Grady & J. Archibald (Eds.), Contemporary linguistic analysis (5th ed., pp. 294–309). Addison Wesley Longman. Cotera, M. (2010). Standing on the middle ground: Ella Deloria’s decolonizing methodology. In M. E. Cotera (Ed.), Native speakers: Ella Deloria, Zora Neale Hurston, Jovita Gonzalez, and the poetics of culture (pp. 41–69). University of Texas Press. Coulthard, G. (2014). Red skin, white masks: Rejecting the colonial politics of recognition. University of Minnesota Press. Daoud, N., Smylie, J., Urquia, M., Allan, B., & O’Campo, P. (2013). The contribution of socio-economic position to the excesses of violence and intimate partner violence among Aboriginal versus non-Aboriginal women in Canada. Canadian Journal of Public Health, 104(4), e278–283. https://doi.org/10.17269/cjph .104.3724 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 Dell, C. A., & Kilty, J. M. (2012). The creation of the expected Aboriginal woman drug offender in Canada: Exploring relations between victimization, punishment, and cultural identity. International Review of Victimology, 19(1), 1–18. https://doi.org/10.1177/0269758012447215 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 Devries, K. M., Mak, J. Y. T., García-Moreno, C., Petzold, M., Child, J. C., Falder, G., Lim, S., Bacchus, L. J., Engell, R. E., Rosenfeld, L., Pallitto, C., Vos, T., Abrahams, N., & Watts, C. H. (2013). The global prevalence of intimate partner violence against women. Science, 340(6140), 1527–1528. https://doi.org /10.1126/science.1240937

Decolonizing Research Driskill, Q. L., Finley, C., Gilley, B. J., & Morgensen, S. L. (Eds.). (2011). Queer Indigenous studies: Critical interventions in theory, politics, and literature. University of Arizona Press. Dyck, E. (2013). Facing eugenics: Reproduction, sterilization, and the politics of choice. University of Toronto Press. Emberley, J. (2001). The bourgeois family, Aboriginal women, and colonial governance in Canada: A study in feminist historical and cultural materialism. Signs, 27(1), 59–85. https://doi.org/10.1086/495670 Ermine, W. (2007). The ethical space of engagement. Indigenous Law Journal, 6(1), 193–203. https://jps .library.utoronto.ca/index.php/ilj/article/view/27669 Evans-Campbell, T., Friedriksen-Goldsen, K. I., Walters, K. L., & Stately, A. (2007). Caregiving experiences among American Indian two-spirit men and women. Journal of Gay & Lesbian Social Services, 18(3–4), 75–92. https://doi.org/10.1300/J041v18n03_05 First Nations Child and Family Caring Society of Canada. (2005a). Wen:de We are coming to the light of day. https://fncaringsociety.com/sites/default/files/docs/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/publications/wende-journey-continues-national-policy-review-first-nations-child-and-family-services First Nations Child and Family Caring Society et. al. v Attorney General of Canada (Representing the Minister of Indian and Northern Affairs), 2016 CHRT 2 C.F.R. (2016). Fornssler, B., McKenzie, H. A., Dell, C. A., Laliberte, L., & Hopkins, C. (2014). “I got to know them in a new way” Rela(y/t)ing rhizomes and community-based knowledge (brokers’) transformation of western and Indigenous knowledge. Cultural Studies? Critical Methodologies, 14(2), 179–193. https://doi.org /10.1177/1532708613516428 Foster, A. M., LaRoche, K. J., El-Haddad, J., DeGroot, L., & El-Mowafi, I. M. (2017). “If I ever did have a daughter, I wouldn’t raise her in New Brunswick:” Exploring women’s experiences obtaining abortion care before and after policy reform. Contraception, 95(5), 477–484. https://doi.org/10.1016 /j.contraception.2017.02.016 Goudreau, G., Weber-Pillwax, C., Cote-Meek, S., Madill, H., & Wilson, S. (2008). Hand drumming: Healthpromoting experiences of Aboriginal women from a northern Ontario urban community. International Journal of Indigenous Health, 4(1), 72–83. https://doi.org/10.18357/ijih41200812317 Grabe, S., Grose, R. G., & Dutt, A. (2015). Women’s land ownership and relationship power: A mixed methods approach to understanding structural inequities and violence against women. Psychology of Women Quarterly, 39(1), 7–19. https://doi.org/10.1177/0361684314533485 Greenwood, M., de Leeuw, S., Lindsay, N. M., & Reading, C. (Eds.). (2015). Determinants of Indigenous peoples’ health in Canada: Beyond the social. Canadian Scholars Press. Gurr, B. (2015). Reproductive justice: The politics of health care for Native American women. Rutgers University Press. Guruge, S., Ford-Gilboe, M., Varcoe, C., Jayasuriya-Illesinghe, V., Ganesan, M. M., Sivayogan, S., Kanthasamy, P., Shanmugalingam, P., & Vithanarachchi, H. (2017). Intimate partner violence in the post-war context: Women’s experiences and community leaders perceptions in the eastern province of Sri Lanka. Plos One, 12(3), e0174801. https://doi.org/10.1371/journal.pone.0174801 Guruge, S., Roche, B., & Catallo, C. (2012). Violence against women: An exploration of the physical and mental health trends among immigrant and refugee women in Canada. Nursing Research & Practice, 1–15. https://doi.org/10.1155/2012/434592 Halberstam, J. (2016). Trans* – Gender transitivity and new configurations of history, memory and kinship. Parallax, 22(3), 366–375. https://doi.org/10.1080/13534645.2016.1201925 Holmes, C. (2009). Destabilizing homonormativity and the public/private dichotomy in North American lesbian domestic violence discourses. Gender, Place & Culture: A Journal of Feminist Geography, 16(1), 77–95. https://doi.org/10.1080/09663690802574837 Hoover, E. (2017). Environmental reproductive justice: Intersections in an American Indian community impacted by environmental contamination. Environmental Sociology 4(1), 8–21. https://doi.org/10.1080 /23251042.2017.1381898

181

182

Colleen Varcoe and Holly A. Mckenzie 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 Hopkinson, R. A., Keatley, E., Glaeser, E., Erickson-Schroth, L., Fattal, O., & Nicholson Sullivan, M. (2017). Persecution experiences and mental health of LGBT asylum seekers. Journal of Homosexuality, 64(12), 1650–1666. https://doi.org/10.1080/00918369.2016.1253392 Hunt, S. (2015). Embodying self-determination: Beyond the gender binary. In M. Greenwood, S. de Leeuw, N. M. Lindsay, & C. Reading (Eds.), Determinants of Indigenous peoples’ health in Canada: Beyond the social (pp. 104–119). Canadian Scholars’ Press. Hunt, S., & Holmes, C. (2015). Everyday decolonization: Living a decolonizing queer politics. Journal of Lesbian Studies, 19(2), 154–172. https://doi.org/10.1080/10894160.2015.970975 Johnstone, R. (2017) After Morgentaler: The politics of abortion in Canada. UBC Press. Kiss, L., Schraiber, L. B., Heise, L., Zimmerman, C., Gouveia, N., & Watts, C. (2012). Gender-based violence and socioeconomic inequalities: Does living in more deprived neighbourhoods increase women’s risk of intimate partner violence? Social Science & Medicine, 74(8), 1172–1179. https://doi.org/10.1016 /j.socscimed.2011.11.033 Kovach, M. (2009). Indigenous methodologies: Characteristics, conversations, and contexts. University of Toronto Press. Landertinger, L. C. L. (2011). The biopolitics of Indigenous reproduction: Colonial discourse and the overrepresentation of Indigenous children in the Canadian child welfre system [Master’s thesis, Queen’s University, Kingston, Ontario]. https://qspace.library.queensu.ca/bitstream/handle/1974/6587 /Landertinger_Laura_CL_201106_MA.pdf Lavallée, L. F. (2009). Practical application of an Indigenous research framework and two qualitative Indigenous research methods: Sharing circles and Anishnaabe symbol-based reflection. International Journal of Qualitative Methods, 8(1), 21–40. https://doi.org/10.1177/160940690900800103 Lee, E. O. J. (2018). Tracing the coloniality of queer and trans migrations: Resituating heterocisnormative violence in the global south and encounters with migrant visa ineligibility to Canada. Canada’s Journal on Refugees (0229-5113), 34(1), 60–74. https://doi.org/10.7202/1050855ar 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 MacManus, V. B. (2015). We are not victims, we are protagonists of this history. International Feminist Journal of Politics, 17(1), 40–57. https://doi.org/10.1080/14616742.2013.817847 Manning, E. (2009). Relationscapes: Movement, art, philosophy. MIT Press. Martin-Hill, D. (2008). The Lubicon Lake Nation: Indigenous knowledge and power. University of Toronto Press. Martin-Storey, A., Paquette, G., Bergeron, M., Dion, J., Daigneault, I., Hébert, M., & Ricci, S. (2018). Sexual violence on campus: Differences across gender and sexual minority status. Journal of Adolescent Health, 62(6), 701–707. https://doi.org/10.1016/j.jadohealth.2017.12.013 McDonald, R. J., & Ladd, P. (2000). First Nations child and family services joint national policy review: Final report. Assembly of First Nations; First Nations Child and Family Service Agency; Department of Indian Affairs and Northern Development. https://fncaringsociety.com/sites/default/files/docs/FNCFCS _JointPolicyReview_Final_2000.pdf 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 Milloy, J. S. (1999). “A national crime:” The Canadian government and the residential school system, 1879 to 1986. University of Manitoba Press. Native Youth Sexual Health Network, & Action Canada for Sexual Health and Rights. (2016). Joint submission to expert mechanism on the rights of Indigenous peoples: Study on the right to health and Indigenous

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.

183

184

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.

185

CHAPTER EIGHT

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:

187

188

Olena Hankivsky and Gemma Hunting

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).

189

190

Olena Hankivsky and Gemma Hunting

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,

191

192

Olena Hankivsky and Gemma Hunting

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

From Gender Mainstreaming towards Mainstreaming Intersectionality

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

193

194

Olena Hankivsky and Gemma Hunting

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

195

196

Olena Hankivsky and Gemma Hunting

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

From Gender Mainstreaming towards Mainstreaming Intersectionality

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

197

198

Olena Hankivsky and Gemma Hunting

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

From Gender Mainstreaming towards Mainstreaming Intersectionality

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

199

200

Olena Hankivsky and Gemma Hunting

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.

201

202

Olena Hankivsky and Gemma Hunting Carson, M., Johannessen, Å., Beyene, A., Remling, E., Ruben, C., & Peter, S. (2013). Institutionalizing gender equality in disaster risk reduction. MSB. Castañeda, H. (2009). Illegality as risk factor: A survey of unauthorized migrant patients in a Berlin clinic. Social Science & Medicine, 68(8), 1552. https://doi.org/10.1016/j.socscimed.2009.01.024 Center for International Forestry Research. (2015). At the intersection of inequities: Lessons learned from CIFOR’s work on gender and climate change adaptation in West Africa [Gender Climate Brief no. 4]. Centre for Research & Education on Violence Against Women & Children. (2015). Learning network: Intersectionality [Research bulletin]. University of Western Ontario. http://www.vawlearningnetwork.ca /our-work/issuebased_newsletters/issue-15/index.html. Chisholm, E., & Howden-Chapman, P. (2017, June 30). Health as a critical enabler and outcome of achieving the SDGs. https://sustainabledevelopment.un.org/hlpf/blog2017/week16Health Cho, S., Crenshaw, K. W., & 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 City for All Women Initiative. (2015). Advancing equity and inclusion: A guide for municipalities. http://www .cawi-ivtf.org/sites/default/files/publications/advancing-equity-inclusion-web_0.pdf City for All Women Initiative. (2019). Women reducing poverty together: An invitation to participate. http:// www.cawi-ivtf.org/sites/default/files/invitation_women_reducing_poverty_together.pdf Clark, N. (2012). Perseverance, determination and resistance: An Indigenous intersectional-based policy analysis of violence in the lives of Indigenous girls. In O. Hankivsky (Ed.), An intersectionality-based policy analysis framework (pp. 133–159). Institute for Intersectionality Research & Policy; Simon Fraser University. Clayman Institute. (2017, January 30). Why gender research matters more than ever. Stanford University. https:// gender.stanford.edu/news-publications/gender-news/why-gender-research-matters-now-more-ever Clayman Institute. (2019). Mission. Stanford University. https://gender.stanford.edu/about/mission Collins, P. H. (2015). Intersectionality’s definitional dilemmas. Annual Review of Sociology, 41, 1–20. https:// doi.org/10.1146/annurev-soc-073014-112142 Crespi, I. (2009). Gender differences and equality issues in Europe: Critical aspects of gender mainstreaming policies. International Review of Sociology 19(1), 171–188. https://doi.org/10.1080/03906700802614010 Davies, A. A., Basten, A., & Frattini, C. (2009). Migration: A social determinant of the health of migrants. EuroHealth, 16(1), 10–12. Development Alternatives with Women for a New Era. (2016). The “Health SDG”: Some progress, but critical concerns remain. In Spotlight on Sustainable Development: Report by the Reflection Group on the 2030 Agenda for Sustainable Development (pp. 39–43). https://neu.globalpolicy.org/sites/default/files/contentpix /spotlight/pdfs/spotlight_ch2_3.pdf Development Studies Network. (2015). Women, gender and development in the pacific: Key issues - women and gender mainstreaming. https://crawford.anu.edu.au/rmap/devnet/devnet/gen/gen_mainstream.pdf Dhamoon, R. K. (2011). Considerations on mainstreaming intersectionality. Political Research Quarterly, 64(1), 230–243. https://doi.org/10.1177/1065912910379227 Enarsson, J. (2015, November 30). Re-politicising intersectionality: How an intersectional perspective can help INGOs be better allies to women’s rights movements. Oxfam Policy and Practice. https://policy -practice.oxfam.org.uk/publications/re-politicising-intersectionality-how-an-intersectional-perspective -can-help-in-594583 Etherington, C., & Baker, L. (2018). From “buzzword” to best practice: Applying intersectionality to children exposed to intimate partner violence. Trauma, Violence & Abuse, 19(1), 58–75. https://doi.org/10.1177 /1524838016631128 European Evaluation Society & Latin American and Caribbean Evaluation Network. (2015). Guide to including a gender + perspective in VOPEs: Innovating to improve institutional capacities. https://evalpartners .org/sites/default/files/documents/evalgender/Gender_Guide_def_en.pdf

From Gender Mainstreaming towards Mainstreaming Intersectionality European Institute for Gender Equality. (2019). What is gender mainstreaming. http://eige.europa.eu/gender -mainstreaming/what-is-gender-mainstreaming European Parliament. (2016, March). Gender aspects of migration and asylum in the EU: An overview [Briefing]. http://www.europarl.europa.eu/RegData/etudes/BRIE/2016/579072/EPRS_BRI(2016) 579072_EN.pdf Eveline, J., & Bacchi, C. (2005). What are we mainstreaming when we mainstream gender? International Feminist Journal of Politics 7(4), 496–512. https://doi.org/10.1080/14616740500284417 Fischer, C. (2012). Intersectional mainstreaming and Sightsavers’ Lady Health Workers Programme in Pakistan. Gender & Development, 20(3), 563–571. https://doi.org/10.1080/13552074.2012.731743 Fleischman, Y., Willen, S. S., Davidovitch, N., & Mor, Z. (2015). Migration as a social determinant of health for irregular migrants: Israel as case study. Social Science and Medicine, 147, 89–97. https://doi.org /10.1016/j.socscimed.2015.10.046 Gender and Development Network. (2017). Intersectionality reflections from the Gender & Development Network. https://static1.squarespace.com/static/536c4ee8e4b0b60bc6ca7c74/t/5a130e9d53450a0abd9c0f8f /1511198367912/Intersectionality+GADN+thinkpiece+November+2017.pdf Gender and Development Network. (2018). Who we are. http://gadnetwork.org/who-we-are/ Ghafournia, N., & Easteal, P. (2018). Are immigrant women visible in Australian domestic violence reports that potentially influence policy? Laws, 18(7), 32. Gilles, K. (2015). Gender equality, inside and out: Gender mainstreaming in international development organizations. http://www.prb.org/Publications/Reports/2015/gender-mainstreaming.aspx Gkiouleka, A., Huijts, T., Beckfield, J., & Bambra, C. (2018). Understanding the micro and macro politics of health: Inequalities, intersectionality & institutions – A research agenda. Social Science & Medicine, 200, 92–98. https://doi.org/10.1016/j.socscimed.2018.01.025 Hancock, A. M. (2011). Solidarity politics for millennials: A guide to ending the oppression Olympics. Palgrave Macmillan. Hankivsky, O. (2007). Gender mainstreaming in the Canadian context: “One step forward and two steps back.” In M. Orsini & M. Smith (Eds.), Critical policy studies (pp. 111–137). University of British Columbia Press. Hankivsky, O. (2005). Gender mainstreaming vs. diversity mainstreaming: A preliminary examination of the role and transformative potential of feminist theory. Canadian Journal of Political Science, 38(4), 977–1001. https://doi.org/10.1017/S0008423905040783 Hankivsky, O. (2008). Gender mainstreaming in Canada and Australia: A comparative analysis. Policy and Society, 27(1), 69–81. https://doi.org/10.1016/j.polsoc.2008.07.006 Hankivsky, O. (Ed.). (2012). An intersectionality based policy analysis framework. Institute for Intersectionality Research and Policy, Simon Fraser University. Hankivsky, O. (2013). Gender mainstreaming: A five-country examination. Politics and Policy, 41(5), 629–655. https://doi.org/10.1111/polp.12037 Hankivsky, O. (2014). Intersectionality 101. Institute for Intersectionality Research and Policy, Simon Fraser University. Hankivsky, O., Grace, D., Hunting, G., Ferlatte, O., Clark, N., Fridkin, A., Giesbrecht, M., Rudrum, S., & Laviolette, T. (2012). Intersectionality-based policy analysis. In O. Hankivsky (Ed.), An intersectionalitybased policy analysis framework (pp. 33–210). Institute for Intersectionality Research and Policy, Simon Fraser University. Hankivsky, O., Grace, D., Hunting, G., Giesbrecht, M., Fridkin, A., Rudrum, S., & Clark, N. (2014). An intersectionality-based policy analysis framework: Critical reflections on a methodology for advancing equity. International Journal for Equity in Health, 13(1), 119. https://doi.org/10.1186/s12939014-0119-x Hankivsky, O., & Jordan-Zachery, J. (Eds.). (2019). The Palgrave handbook of intersectionality in public policy. Palgrave Macmillan Press.

203

204

Olena Hankivsky and Gemma Hunting Hankivksy, 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 Henry, S. K., Sandler, J., Passerini, L., Darmstadt, G. L. (2017). Taking on the gender challenge in organisations: What does it take? Global Public Health, 12(7), 846–857. https://doi.org/10.1080/17441692 .2015.1094110 Hill, P. S., Buse, K., Brolan, C. E., & Ooms, G. (2014). How can health remain central post-2015 in a sustainable development paradigm? Globalization and Health, 10(18), 1–5. https://doi.org/10.1186/1744 -8603-10-18 Hunt, G., & Antin, T. (2019). Gender and intoxication: From masculinity to intersectionality. Drugs (Abingdon, England), 26(1), 70–78. https://doi.org/10.1080/09687637.2017.1349733 Hunting, G., Grace, D., & Hankivsky, O. (2015). Taking action on stigma and discrimination: An intersectionality-informed model of social inclusion and exclusion. Intersectionalities: A Global Journal of Social Work Analysis, Research, Polity, and Practice, 4(2), 101–125. https://journals.library.mun.ca/ojs/index .php/IJ/article/download/916/1240 Hunting, G., & Hankivsky, O. (2020). Cautioning against the co-optation of intersectionality in gender mainstreaming. Journal of International Development, 32(3), 430–436. Include Gender. (2014). Intersectionality. http://www.includegender.org/facts/intersectionality/ Ingleby, D. (2012). Ethnicity, migration and the “social determinants of health” agenda. Psychosocial Intervention, 21(3), 331–341. https://doi.org/10.5093/in2012a29 Ingleby, D. (2014, April 10–12). On walking and chewing gum at the same time: Why intersectionality is important to health equity [Conference presentation]. Fifth European Conference on Migration and Ethnic Minority Health, Granada, Spain. http://www.academia.edu/8258786/On_walking_and_chewing _gum_at_the_same_time_why_intersectionality_is_important_to_health_equity International Organization for Migration. (2009). Migration: A social determinant of the health of migrants [Background paper]. https://migrationhealthresearch.iom.int/migration-social-determinanthealth-migrants International Organization for Migration. (2013). International migration, health and human rights. http:// www.ohchr.org/Documents/Issues/Migration/WHO_IOM_UNOHCHRPublication.pdf International Organization for Migration. (2017). Health of migrants: Resetting the agenda. Report of the 2nd Global Consultation. https://www.iom.int/sites/default/files/our_work/DMM/Migration-Health/GC2 _SriLanka_Report_2017_FINAL_22.09.2017_Internet.pdf Johnson, J., Sharman, Z., Vissandjée, B., & Stewart, D. E. (2014). Does a change in health research funding policy related to the integration of sex and gender have an impact? PLoS ONE, 9(6), e99900. https://doi .org/10.1371/journal.pone.0099900 Jordan-Zachery, J. S. (2018). Lost tribes: An intersectionality-based policy analysis of how U.S. HIV/AIDS policy fails to “rescue” Black orphans. In J. S. Zachery & N. G. Alexander-Floyd (Eds.), Black women in politics (pp. 97–111). State University of New York Press. Kantola, J. (2010). Gender and the European Union. Palgrave MacMillan. Kapilashrami, A., & Hankivsky, O. (2018). Intersectionality and why it matters to global health. The Lancet, 391(10140), 2589–2591. https://doi.org/10.1016/S0140-6736(18)31431-4 Kawar, M. (2004). Gender and migration: Why are women more vulnerable? In F. Reysoo, & C. Verschuur (Eds.), Women in movement (pp. 71–87). Graduate Institute Publications. Korea Center for Women in Science, Engineering and Technology. (2016). The role of gender-based innovations for the UN Sustainable Development Goals. Toward 2030: Better science and technology for all. https://gender-summit.com/images/GS6Docs/SDG_Report_FINAL.Jan13.pdf Krizsan, A., Skjeie, H., & Squires, J. (Eds.). (2012). Institutionalizing intersectionality the changing nature of European equality regimes. Palgrave Macmillan.

From Gender Mainstreaming towards Mainstreaming Intersectionality Lamprell, G., & Braithwaite, J. (2017). Mainstreaming gender and promoting intersectionality in Papua New Guinea’s health policy: A triangulated analysis applying data-mining and content analytic techniques. International Journal of Equity in Health, 16(65), 1–10. https://doi.org/10.1186/s12939-017 -0555-5 Lenhardt, A., & Samman, E. (2015, October). In quest of inclusive progress: Exploring intersecting inequalities in human development. Overseas Development Institute. Lombardo, E., Meier, P., & Verloo, M. (Eds.). (2009). The discursive politics of gender equality: Stretching, bending and policy-making. Routledge. Lombardo, E., Meier, P., & Verloo, M. (2017). Policymaking from a gender + equality perspective. Journal of Women, Politics & Policy, 38(1), 1–19. https://doi.org/10.1080/1554477X.2016.1198206 Magar, V. (2015). Gender, health and the Sustainable Development Goals [Research bulletin]. World Health Organization. https://doi.org/10.2471/BLT.15.165027. Mangubhai, J. P. & Capraro, C. (2015). “Leave no one behind” and the challenge of intersectionality: Christian Aid’s experience of working with single and Dalit women in India. Gender & Development, 23(2), 261–277. https://doi.org/10.1080/13552074.2015.1054206 Marmot, M. (2016). Society and health of migrants. European Journal of Epidemiology, 31(7), 639–641. https:// doi.org/10.1007/s10654-016-0174-2 Mckenzie, J., & Kesner, C. (2016, May). Mental health funding and the SDGs: What now and who pays? Overseas Development Institute http://www.afro.who.int/sites/default/files/2017-05/Mental.pdf Mendell, A., Dyck, L., Ndumbe-Eyoh, S., & Morrison, V. (2012). Tools and approaches for assessing and supporting public health action on the social determinants of health and health equity. http://www.ncchpp.ca /docs/Equity_Tools_NCCDH-NCCHPP.pdf Mills, E. (2015). IDS Evidence Report 154 – “Leave no one behind”: Gender, sexuality and the Sustainable Development Goals. Institute of Development Studies. https://opendocs.ids.ac.uk/opendocs/bitstream /handle/123456789/7104/ER154_LeaveNoOneBehindGenderSexualityandtheSDGs.pdf Morgan, R., George, A., Ssali, S., Hawkins, K., Molyneux, S., & Theobald, S. (2016). How to do (or not to do) gender analysis in health systems research. Health Policy and Planning, 31(8), 1069–1078. https://doi .org/10.1093/heapol/czw037 Morris, S., & Pin, L. (2020, September 7). New legislation greatly increases the rights of Ontario’s landlords at the expense of tenants, opening the door to mass evictions during a pandemic. Policy Options. https:// policyoptions.irpp.org/magazines/september-2020/ontarios-bill-184-and-the-myth-of-tenant-protection/ Mulé, N. J. (2015). The politicized queer, the informed social worker: Dis/Re-Ordering the social order. In B. J. O’Neill, T. A. Swan, & N. J. Mulé (Eds.), LGBTQ people and social work: Intersectional perspectives (pp. 17–35). Canadian Scholars’ Press. Mulinari, D., Keskinen, S., Irni, S., & Tuori, S. (2012). Introduction: Postcolonialism and the Nordic models of welfare and gender. In S. Keskinen, S. Tuori, S. Irni, & D. Mulianri (Eds.), Complying with colonialism: Gender, race and ethnicity in the Nordic region (pp. 1–16). Ashgate Publishing. National Collaborating Centre for Healthy Public Policy. (2015). Health inequalities and intersectionality. Nunes, A. R., Lee, K., & O’Riordan, T. (2016). The importance of an integrating framework for achieving the Sustainable Development Goals: The example of health and well-being. BMJ Global Health, 1(3), e000068. https://doi.org/10.1136/bmjgh-2016-000068 Our Watch. (2015, May 29). Getting serious about change: The building blocks for prevention of men’s violence against women. Palència, L., Malmusi, D., & Borrell, C. (2014, October). Incorporating intersectionality in evaluation of policy impacts on health equity: A quick guide. SOPHIE. http://www.sophie-project.eu/pdf/Guide_intersectionality _SOPHIE.pdf Parpart, J. L. (2014). Exploring the transformative potential of gender mainstreaming in international development institutions. Journal of International Development, 26(3), 382–395. https://doi.org/10.1002/jid.2948

205

206

Olena Hankivsky and Gemma Hunting Paterson, S. (2010). What’s the problem with gender-based analysis? Gender mainstreaming policy and practice in Canada. Canadian Public Administration, 53(3), 395–416. https://doi.org/10.1111/j.1754-7121 .2010.00134.x Paz Arauco, V., Gazdar, H., Hevia-Pacheco, P., Kabeer, N., Lenhardt, A., Quratulain Masood, S., Naqvi, H., Nayak, N., Norton, A., Sadana Sabharwal, N., Scalise, E., Shepherd, A., Thapa, D., Thorat, S., Hien Tran, D., Vergara Camus, L., Woldehanna, T., & Mariotti, C. (2014). Strengthening social justice to address intersecting inequalities in the post-2015 agenda. Overseas Development Institute. Public Policy and Governance Review. (2017). Unpacking equity: “Equal” policies are not always fair. Report provided by the Public Policy and Governance Review and the Gender, Diversity and Public Policy Initiative (GDPP) at the School of Public Policy and Governance. https://ppgreview.ca/2017/10/31/unpacking-equity -equal-policies-are-not-always-fair/ Razum, O., & Spallek, J. (2014). Addressing health-related interventions to immigrants: migrant-specific or diversity-sensitive? International Journal of Public Health, 59(6), 893–895. https://doi.org/10.1007/s00038 -014-0584-4 Rechel, B., Mladovsky, P., Ingleby, D., Mackenbach, J. P., & McKee, M. (2013). Migration and health in an increasingly diverse Europe. Lancet, 381(9873), 1235–1245. https://doi.org/10.1016/S0140 -6736(12)62086-8 Re: Gender. (2016). A gender lens on affordable housing. https://www.icrw.org/wp-content/uploads/2016/11 /gender_lens_on_affordable_housing_by_regender_final-1.pdf Rodriguez, A., & Leralta, O. (2015). Module 1: Sensitivity and awareness of cultural and other forms of diversity. Training packages for health professionals to improve access and quality of health services for migrants and ethnic minorities, including the Roma. European Commission. http://ec.europa.eu/chafea/documents /health/migrants/M1_U2-Intercultural-Competence-and-Sensitivity-to-Diversity-.pdf Seeleman, C., Essink-Bot, M, L., Stronks, K., & Ingleby, D. (2015). How should health service organizations respond to diversity? A content analysis of six approaches. BMC Health Services Research, 15(510), 1–18. https://doi.org/10.1186/s12913-015-1159-7 Siim, B., & Stoltz, P. (2013). Nationalism, gender and welfare: The politics of gender equality in Scandinavia. Feminist Research Center in Aalborg; Institute for Culture of Global Studies. FREIA’stekstserie, No. 84. https://doi.org/10.5278/freia.76431843 Standing Committee on the Status of Women. (2016). Implementing GBA+ in the Government of Canada. Report of the Standing Committee on the Status of Women. http://www.ourcommons.ca/Content/Committee /421/FEWO/Reports/RP8355396/feworp04/feworp04-e.pdf Status of Women Canada. (2017). What is GBA+? SWC; Government of Canada. http://www.swc-cfc.gc.ca /gba-acs/index-en.html Stuart, E., & Woodroffe, J. (2016). Leaving no-one behind: Can the Sustainable Development Goals succeed where the Millennium Development Goals lacked? Gender & Development, 24(1), 69–81. https://doi.org /10.1080/13552074.2016.1142206 Swedish Secretariat for Gender Research. (2014). Gender mainstreaming with an intersectional perspective. https://www.includegender.org/wp-content/uploads/2015/06/Gender-Mainstreaming-with-an -Intersectional-Perspective-pdf.pdf Theobald, S., Morgan, R., Hawkins, K., Ssali, S., George, A., & Molyneux, S. (2017). The importance of gender analysis in research for health systems strengthening. Health Policy and Planning, 32(Suppl 5), v1–v3. https://doi.org/10.1093/heapol/czx163 Tolhurst, R., Leach, B., Price, J., Robinson, J., Ettore, E., Scott-Samuel, A., Kilonzo, N., Sabuni, L. P., Robertson, S., Kapilashrami, A., Bristow, K., Lang, R., Romao, F., & Theobald, S. (2012). Intersectionality and gender mainstreaming in international health: Using a feminist participatory action research process to analyze voices and debates from the global south and north. Social Science & Medicine, 74(11), 1825–1832. https://doi.org/10.1016/j.socscimed.2011.08.025

From Gender Mainstreaming towards Mainstreaming Intersectionality United Nations. (2016). The Sustainable Development Goals Report 2016. https://unstats.un.org/sdgs/report /2016/The%20Sustainable%20Development%20Goals%20Report%202016.pdf United Nations. (2017, March13). Intersectionality – An inclusive and effective approach to gender equality [Video]. http://webtv.un.org/watch/intersectionality-an-inclusive-and-effective-approach-to-gender -equality/5357986063001 United Nations. (2019). Goal 10: Reduce inequality within and among countries. https://www.un.org /sustainabledevelopment/inequality/ United Nations Development Programme. (2013a). Powerful synergies: Gender equality, economic development and environmental sustainability. http://www.undp.org/content/dam/undp/library/gender/f_Powerful Synergies2013_Web.pdf United Nations Development Programme. (2013b). Interplay between gender and ethnicity: Exposing structural disparities of Romani women. http://www.undp.org/content/dam/rbec/docs/Exposing-structural -disparities-of-Romani-women.pdf United Nations Development Programme. (2014a). Fast-forwarding gender equality and women’s empowerment? Reflections on measuring change for UNDP’s thematic evaluation on gender mainstreaming and gender equality 2008–2013. http://web.undp.org/evaluation/documents/articles-papers/occasional _papers/Occasional%20Paper_Gender_Pittman%20.pdf United Nations Development Programme. (2014b). Gender equality: Women’s participation and leadership in governments at the local level Asia and the Pacific 2013. http://www.th.undp.org/content/dam/thailand /docs/publications/RBAP-DG-2014-Gender-Equality.pdf United Nations Division for Social Policy and Development Disability. (2016). Expert group meeting on advancing the rights and perspectives of women and girls with disabilities in development and society. https:// www.un.org/development/desa/disabilities/about-us/expert-group-meetings/egm2016_women_chile.html United Nations High Commissioner for Refugees. (2011). Age, gender and diversity policy: Working with people and communities for equality and protection. http://www.unhcr.org/cgi-bin/texis/vtx/home /opendocPDFViewer.html?docid=543b922a6&query=gender United Nations High Commissioner for Refugees. (2016). Regional refugee and migrant response plan for Europe Eastern Mediterranean and western Balkans route. http://www.unhcr.org/577220cf7.pdf United Nations International Children’s Emergency Fund. (2017). Gender Pro: Credentialing & capacity building program. https://www.ungm.org/Public/Notice/63446 United Nations Social Development Network. (2017). Intersectionality and working together to achieve the SDGs. http://unsdn.org/2017/07/13/intersectionality-and-working-together-to-achieve-the-sdgs/ United Nations Women. (2015). Progress of the world’s women 2015–2016: Transforming economies, realizing rights. http://progress.unwomen.org/en/2015/pdf/UNW_progressreport.pdf United Nations Women. (2016). UN women and the International Organization for Migration call on world leaders to make migration policies that work for women. http://www.unwomen.org/en/news/stories/2016/9 /statement-un-women-and-iom-call-on-world-leaders-to-make-migration-policies-that-work-for -women United Nations Women. (2017). Virtual dialogue on addressing intersectionality in training for gender equality: A conversation for gender trainers. Final Report. UN Women Training Centre. Urbanek, D. (2009). Towards a processual intersectional analysis. QUING. U.S. Agency for International Development. (2015). Piloting intersectional gender assessments in Malawi: Challenges and lessons learned [Technical report]. https://docs.google.com/a/ccrdproject.com/viewer ?a=v&pid=sites&srcid=Y2NyZHByb2plY3QuY29tfGNjcmR8Z3g6MzkyZjM2ODAyMmFlNDhiZA. Verloo, M. (2013). Intersectional and cross-movement politics and policies: Reflections on current practices and debates. Signs: Journal of Women in Culture and Society, 38(4), 93–915. https://doi.org/10.1086/669572 Walby, S. (2011). The future of feminism. Polity Press. White, A., Seims, A., Cameron, I., & Taylor, T. (2018). Social determinants of male health: A case study of Leeds, UK. BMC Public Health, 18(1), 160. https://doi.org/10.1186/s12889-018-5076-7

207

208

Olena Hankivsky and Gemma Hunting Witter, S., Govender, V., Ravindran, T. K., & Yates, R. (2017). Minding the gaps: Health financing, universal health coverage and gender. Health Policy and Planning, 32(Suppl. 5), v4-v12. https://doi.org/10.1093 /heapol/czx063 Women’s Legal Education and Action Fund. (2016), January 22). Re: Closing the gender wage gap. http:// www.leaf.ca/wp-content/uploads/2016/02/2016-01-22-LEAF-Submission-Gender-Wage-Gap -Consultation.pdf Woodward, A. E. (2008). Too late for gender mainstreaming? Taking stock in Brussels. Journal of European Social Policy, 18(3), 289–302. https://doi.org/10.1177/0958928708091061 World Health Organization. (2008, May 24). Health of migrants [Sixty-First World Health Assembly – Agenda Item 11.9]. http://apps.who.int/iris/bitstream/10665/23533/1/A61_R17-en.pdf World Health Organization. (2010). Poverty, social exclusion and health systems in the WHO European Region. http://www.euro.who.int/__data/assets/pdf_file/0004/127525/e94499.pdf World Health Organization. (2012). Positioning health in the post-2015 development agenda: WHO discussion paper. http://www.who.int/topics/millennium_development_goals/post2015/WHOdiscussionpaper _October2012.pdf World Health Organization. (2017a). Women on the move: Migration, care work, and health. http://apps.who .int/iris/bitstream/10665/259463/1/9789241513142-eng.pdf. World Health Organization. (2017b). Promoting the health of refugees and migrants: Framework of priorities and guiding principles to promote the health of refugees and igrants. http://www.who.int/migrants/about /framework_refugees-migrants.pdf. World Health Organization. (2017c). Proposed health component global compact for safe, orderly and regular migration. http://www.who.int/migrants/about/health-component-GCM.pdf. World Health Organization. (2017d). Promoting the health of refugees and migrants: Draft framework of priorities and guiding principles to promote the health of refugees and migrants. http://www.who.int/migrants /news-events/A70_24-en.pdf. World Health Organization. (2020). Incorporating intersectional gender analysis into research on infectious diseases of poverty: A toolkit for health researchers. World Health Organization Europe. (2016). Strategy and action plan for refugee and migrant health in the WHO European Region. http://www.euro.who.int/__data/assets/pdf_file/0004/314725/66wd08e _MigrantHealthStrategyActionPlan_160424.pdf Yousefi, N. (2017). Intersectionality-based policy analysis: A necessary tool for policy work. https://ppgreview.ca /2017/11/09/intersectionality-based-policy-analysis-a-necessary-tool-for-policy-work/ Zalewski, M. (2010). ‘I don’t even know what gender is:’ A discussion of the connections between gender, gender mainstreaming and feminist theory. Review of International Studies, 36(1), 3–27. https://doi.org /10.1017/S0260210509990489 Zimmerman, C., Kiss, L., & Hossain, M. (2011). Migration and health: A framework for 21st century policy-making. PLoS Medicine, 8(5), e1001034. https://doi.org/10.1371/journal.pmed.1001034 Zufferey, C. (Ed.). (2017). Social policy and homelessness. In C. Zuffrey (Ed.), Homelessness and social work: An intersectional approach (pp. 67–95). Routledge.

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/).

210

Olena Hankivsky, Kristen W. Springer, and Gemma Hunting

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

211

212

Olena Hankivsky, Kristen W. Springer, and Gemma Hunting

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?

213

214

Olena Hankivsky, Kristen W. Springer, and Gemma Hunting

✓ 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

217

218

Olena Hankivsky, Kristen W. Springer, and Gemma Hunting

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.

220

Olena Hankivsky, Kristen W. Springer, and Gemma Hunting

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).

221

222

Olena Hankivsky, Kristen W. Springer, and Gemma Hunting

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

223

224

Olena Hankivsky, Kristen W. Springer, and Gemma Hunting

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

225

226

Olena Hankivsky, Kristen W. Springer, and Gemma Hunting

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

227

228

Olena Hankivsky, Kristen W. Springer, and Gemma Hunting Bowleg, L. (2008). When Black + lesbian + woman ≠ Black lesbian woman: The methodological challenges of qualitative and quantitative intersectionality research. Sex roles, 59(5–6), 312–325. https://doi.org /10.1007/s11199-008-9400-z Bowleg, L., & Bauer, G. (2016). Invited reflection: Quantifying intersectionality. Psychology of Women Quarterly, 40(3), 337–341. https://doi.org/10.1177/0361684316654282 Brown, T. H., & Hargrove, T. W. (2013). Multidimensional approaches to examining gender and racial /ethnic stratification in health. Women, Gender, and Families of Color, 1(2), 180–206. https://doi.org/10.5406 /womgenfamcol.1.2.0180 Canadian Institutes of Health Research. (2013). Sex, gender and health research guide: A tool for CIHR applicants. http://www.cihr-irsc.gc.ca/e/32019.html Canadian Institutes of Health Research. (2016). How to integrate sex and gender into research. http://www .cihr-irsc.gc.ca/e/50836.html Canadian Institutes of Health Research-Institute of Gender and Health. (2012). IGH gender, sex and health research casebook. http://www.cihr-irsc.gc.ca/e/44082.html Canadian Institutes of Health Research-Institute of Gender and Health. (2017). Online training modules: Integrating sex & gender in health research. http://www.cihr-irsc.gc.ca/e/49347.html Canadian Institutes of Health Research & Social Sciences and Humanities Research Council. (2015). Healthy and productive work, SPOR networks in chronic disease. http://cihr-irsc.gc.ca/e/47706.html Choo, H. Y., & Ferree, M. M. (2010). Practicing intersectionality in sociological research: A critical analysis of inclusions, interactions, and institutions in the study of inequalities. Sociological Theory, 28(2), 129–149. https://doi.org/10.1111/j.1467-9558.2010.01370.x Clayton, J. A. (2015). Studying both sexes: A guiding principle for biomedicine. The FASEB Journal, 30(2), 519–524. https://doi.org/10.1096/fj.15-279554 Clayton, J. A., & Collins, F. S. (2014). Policy: NIH to balance sex in cell and animal studies. Nature News, 509(7500), 282. https://doi.org/10.1038/509282a Del Boca, F. K. (2016). Addressing sex and gender inequities in scientific research and publishing. Addiction, 111(8), 1323–1325. https://doi.org/10.1111/add.13269 European Association of Science Editors. (2015, March 22–25). Making visible the invisible: Development of the guidelines on sex and gender equity in research (SAGER) [Conference presentation]. Sixth World Congress on Women’s Mental Health, Tokyo, Japan. http://www.ease.org.uk/sites/default/files/ease_gpc _wcwmh_s.heidari_2015-03-01_v1.pdf European Commission. (2009). The gender challenge in research funding: Assessing the European national scenes. https://ec.europa.eu/research/swafs/pdf/pub_gender_equality/gender-challenge-in-researchfunding_en.pdf European Commission. (2011). Toolkit: Gender in EU-funded research. https://web.infn.it/CUG/images /alfresco/Risorse/EC/2011ToolkitGenderEuFundedResear ch.pdf European Commission. (2014). Analysis of the state of play of the European research area in member states and associated countries: Focus on priority areas. Final Report. http://ec.europa.eu/research/era/pdf/era -communication/analysis_of_the_state_of_play_of_era_vf20140826.pdf 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 Geller, S. E., Koch, A., Pellettieri, B., & Carnes, M. (2011). Inclusion, analysis, and reporting of sex and race/ethnicity in clinical trials: Have we made progress? Journal of Women’s Health, 20(3), 315–320. https://doi.org/10.1089/jwh.2010.2469 Geller, S., Pomeroy, C., & Thomas, P. A. (2013). Women’s health research: Road map to the future. Global Advances in Health and Medicine, 2(5), 5–6. https://doi.org/10.7453/gahmj.2013.069 GENDER-NET. (n.d.). Promoting gender equality in research institutions and integration of the gender dimension in research contents. http://www.gender-net.eu

Beyond Sex and Gender Differences in Funding and Reporting of Health Research Hammarström, A., & Annandale, E. (2012). A conceptual muddle: An empirical analysis of the use of “sex” and “gender” in “gender-specific medicine” journals. PLoS One, 7(4), e34193. https://doi.org/10.1371 /journal.pone.0034193 Hankivsky, O. (Ed.). (2011). Health inequities in Canada: Intersectional frameworks and practices. UBC Press. 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 Hankivsky, O., Doyal, L., Einstein, G., Kelly, U., Shim, J., Weber, L., & Repta, R. (2017). The odd couple: Using biomedical and intersectional approaches to address health inequities. Global Health Action, 10(Suppl. 2), 1326686. https://doi.org/10.1080/16549716.2017.1326686 Hankivsky, O., Springer, K. W., & Bates, L. M. (2015). Response to Johnson and Beaudet’s commentary: Moving beyond sex and gender reporting in health research. Health, 14(12). https://doi.org/10.17269 /CJPH.106.5042 Hawkes, S., & Buse, K. (2013). Gender and global health: Evidence, policy, and inconvenient truths. The Lancet, 381(9879), 1783–1787. https://doi.org/10.1016/S0140-6736(13)60253-6 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 Heidari, S., Karim, Q. A., Auerbach, J. D., Buitendijk, S. E., Cahn, P., Curno, M. J., Hankins, C., Katabira, E., Kippax, S., Marklink, R., Marsh, J., Marusic, A., Nass, H. M., Montaner, J., Pollitzer, E., Ruiz-Cantero, M. T., Sherr, L., Sow, P. S., Squires, K., & Wainberg, M. A. (2012). Gender-sensitive reporting in medical research. Journal of the International AIDS Society, 15(1), 11. https://doi.org/10.1186/1758-2652-15-11 Hinze, S. W., Lin, J., & Andersson, T. E. (2012). Can we capture the intersections? Older Black women, education, and health. Women’s Health Issues, 22(1), e91–e98. https://doi.org/10.1016/j.whi.2011.08.002 Hunting, G., & Hankivsky, O. (2020). Cautioning against the co-optation of intersectionality in gender mainstreaming. Journal of International Development, 32(3), 430–436. Institute of Medicine Board on Population Health and Public Health Practice. (2012). Sex-specific reporting of scientific research: A workshop summary. National Academies Press. International Committee of Medical Journal Editors. (2018). Recommendations for the conduct, reporting, editing, and publication of scholarly work in medical journals. http://www.icmje.org/icmje-recommendations.pdf Irish Research Council. (2016). Irish Research Council policies and practice to promote gender equality and the integration of gender analysis in research [Progress update]. http://research.ie/assets/uploads/2016/06/final -_progress_report_on_gender.pdf Johnson, J. L., & Beaudet, A. (2013). Sex and gender reporting in health research: why Canada should be a leader. Canadian Journal of Public Health, 104(1), e80–e81. https://doi.org/10.1007/BF03405660 Johnson, J., Sharman, Z., Vissandjee, B., & Stewart, D. E. (2014). Does a change in health research funding policy related to the integration of sex and gender have an impact? PloS One, 9(6), e99900. https://doi .org/10.1371/journal.pone.0099900 League of European Research Universities. (2015). Gendered research and innovation: Integrating sex and gender analysis into the research process. https://www.leru.org/files/Gendered-Research-and-Innovation-Full-paper.pdf Marmot, M., & Allen, J. J. (2014). Social determinants of health equity. American Journal of Public Health, 104(S4), S517–S519. https://doi.org/10.2105/AJPH.2014.302200 National Institutes of Health (NIH). (2015). Consideration of sex as a biological variable in NIH-funded research. https://grants.nih.gov/grants/guide/notice-files/not-od-15-102.html National Institutes of Health (NIH). (2001). NIH Policy and guidelines on the inclusion of women and minorities as subjects in clinical research. https://grants.nih.gov/policy/inclusion/women-and-minorities /guidelines.htm National Institutes of Health (NIH) Office of Research on Women’s Health. (n.d.). How sex and gender influence health and disease. https://orwh.od.nih.gov/sex-gender/sexgender-influences-health-and-disease /infographic-how-sexgender-influence-health

229

230

Olena Hankivsky, Kristen W. Springer, and Gemma Hunting Patsopoulos, N. A., Tatsioni, A., & Ioannidis, J. P. (2007). Claims of sex differences: An empirical assessment in genetic associations. Jama, 298(8), 880–893. https://doi.org/10.1001/jama.298.8.880 Pinn, V. W. (2013). Women’s health research: Current state of the art. Global Advances in Health and Medicine, 2(5), 8–10. https://doi.org/10.7453/gahmj.2013.063 Putting gender on the agenda [editorial]. (2010). Nature, 465(7299), 665. https://doi.org/10.1038/465665a Research Council of Norway. (2014). Gender balance and gender perspectives in research and innovation: Policy for the Research Council of Norway 2013–2017. https://genderedinnovations.stanford.edu/Norway2014Policy.pdf Richardson, L. J., & Brown, T. H. (2016). (En) gendering racial disparities in health trajectories: A life course and intersectional analysis. SSM-Population Health, 2, 425–435. https://doi.org/10.1016/j.ssmph.2016.04.011 Ritz, S. A., Antle, D. M., Côté, J., Deroy, K., Fraleigh, N., Messing, K., Parent, L., St-Pierre, J., Sharman, Z., & Johnson, J. (2012). Towards the inclusion of gender and sex in health research and funding: an institutional perspective. Social Science & Medicine, 74(11), 1812–1816. https://doi.org/10.1016 /j.socscimed.2011.08.039 Schiebinger, L., Klinge, I., Paik, H. Y., Sánchez de Madariaga, I., Schraudner, M., & Stefanick, M. (Eds.). (n.d.). Sex and gender analysis policies of major granting agencies. Gendered Innovations in Science, Health & Medicine, Engineering, and Environment. http://genderedinnovations.stanford.edu/sex-and-gender -analysis-policies-major-granting-agencies.html Schulz, A. J., & Mullings, L. E. (2006). Gender, race, class, & health: Intersectional approaches. Jossey-Bass. Shim, J. K. (2014). Heart-sick: The politics of risk, inequality, and heart disease. NYU Press. 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 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 Stronks, K., Wieringa, N. F., & Hardon, A. (2013). Confronting diversity in the production of clinical evidence goes beyond merely including under-represented groups in clinical trials. Trials, 14(1), 177. https://doi.org/10.1186/1745-6215-14-177 Swedish Research Council. (2015). A gender neutral process? A qualitative study of the evaluation of research grant applications 2014. https://www.vr.se/english/analysis/reports/our-reports/2015-04-03-a-gender -neutral-process.html Tannenbaum, C., Ellis, R. P., Eyssel, F., Zou, J., & Schiebinger, L. (2019). Sex and gender analysis improves science and engineering. Nature, 575(7781), 137–146. Tannenbaum, C., Greaves, L., & Graham, I. D. (2016). Why sex and gender matter in implementation research. BMC Medical Research Methodology, 16(1), 145. https://doi.org/10.1186/s12874-016-0247-7 Welch, V., Doull, M., Yoganathan, M., Jull, J., Boscoe, M., Coen, S. E., Marshall, Z., Pardo, J., Pederson, A., Petkovic, J., Puil, L., Quinlan, L., Shea, B., Rader, T., Runnels, V., & Tudiver, S. (2017). Reporting of sex and gender in randomized controlled trials in Canada: A cross-sectional methods study. Research Integrity and Peer Review, 2(1), 15. https://doi.org/10.1186/s41073-017-0039-6 White, J., Tannenbaum, C., Klinge, I., Schiebinger, L., & Clayton, J. (2021). The integration of sex and gender considerations into biomedical research: Lessons from international funding agencies. The Journal of Clinical Endocrinology & Metabolism, 106(10), 3034–3048. https://doi.org/10.1210/clinem/dgab434 Vaillancourt, C., & Mergler, D. (2014). First steps for integrating sex and gender considerations into basic experimental biomedical research. The Federation of American Societies for Experimental Biology Journal, 28(1), 4–13. https://doi.org/10.1096/fj.13-233395 Veenstra, G. (2013). The gendered nature of discriminatory experiences by race, class, and sexuality: A comparison of intersectionality theory and the subordinate male target hypothesis. Sex Roles, 68(11–12), 646–659. https://doi.org/10.1007/s11199-012-0243-2 ZonMw. (2020). General relevance criteria. https://www.zonmw.nl/en/news-and-funding/funding/relevance -criteria/

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,

232

Morrow, Reid, Landy, Chatterjee, Frisby, Holmes, and Yap

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

Engaging Communities

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

233

234

Morrow, Reid, Landy, Chatterjee, Frisby, Holmes, and Yap

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).

235

236

Morrow, Reid, Landy, Chatterjee, Frisby, Holmes, and Yap

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

Engaging Communities

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

237

238

Morrow, Reid, Landy, Chatterjee, Frisby, Holmes, and Yap

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.

Engaging Communities

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

239

240

Morrow, Reid, Landy, Chatterjee, Frisby, Holmes, and Yap

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.

Engaging Communities

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).

241

242

Morrow, Reid, Landy, Chatterjee, Frisby, Holmes, and Yap

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

Engaging Communities

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

243

244

Morrow, Reid, Landy, Chatterjee, Frisby, Holmes, and Yap

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

Engaging Communities

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.

245

246

Morrow, Reid, Landy, Chatterjee, Frisby, Holmes, and Yap

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

Engaging Communities

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

247

248

Morrow, Reid, Landy, Chatterjee, Frisby, Holmes, and Yap

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).

Engaging Communities

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.

249

250

Morrow, Reid, Landy, Chatterjee, Frisby, Holmes, and Yap REFERENCES Anderson, J. M., Khan, K. B., & Reimer-Kirkham, S. (2011). Community research from a post-colonial feminist perspective: Exemplars from health research in Canada and India. In G. Creese & W. Frisby (Eds.), Feminist community research: Case studies and methodologies (pp. 16–36). UBC Press. 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 Bauer, G. R., Hammond, R., Travers, R., Kaay, M., Hohenadel, K., & 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), 348–61. https://doi.org/10.1016/j.jana.2009.07.004 Borda, F. O. (2006). Participatory (action) research in social theory: Origins and challenges. In P. Reason & H. Bradbury (Eds.) Handbook of action research (pp. 27–37). SAGE. Bowleg, L. (2012). The problem with the phrase women and minorities: Intersectionality—an important theoretical framework for public health. American Journal of Public Health, 102(7), 1267–1273. https:// doi.org/10.2105/AJPH.2012.300750 Brackmann, S. M. (2015). Community engagement in a neoliberal paradigm. Journal of Higher Education Outreach and Engagement, 19(4), 115–146. https://openjournals.libs.uga.edu/jheoe/article/view/1235/1232 Browne, A. J., Smye, & V. L., Varcoe, C. (2007). Postcolonial-feminist theoretical perspectives and women’s health. In M. Morrow, O. Hankivsky, & C. Varcoe (Eds.), Women’s health in Canada (pp. 124–142). University of Toronto Press. Brydon-Miller, M., Greenwood, D., & Maguire, P. (2003). Editorial: Why action research? Action Research, 1(1), 9–28. https://doi.org/10.1177/14767503030011002 Cahill, C. (2007). The personal is political: Developing new subjectivities through participatory action research. Gender, Place & Culture: A Journal of Feminist Geography, 14(3), 267–292. https://doi.org/10.1080 /09663690701324904 Carstensen-Egwuom, I. (2014) Connecting intersectionality and reflexivity: Methodological approaches to social positionalities. Erdkunde, 68(4), 265–276. https://doi.org/10.3112/erdkunde.2014.04.03 Clark, N. (2016). Shock and awe: Trauma as the new colonial frontier. Humanities, 5(1), 14. https://doi.org /10.3390/h5010014 Coghlan, D., & Brydon-Miller, M. (2014). The Sage encyclopedia of action research. SAGE. Collins, P. H. (1990). Black feminist thought: Knowledge, consciousness, and the politics of empowerment. Unwin Hyman. Collins, P. H. (2004). Learning from the outsider within: The sociological significance of Black feminist thought. In S. Harding (Ed.), The feminist standpoint theory reader (pp. 103–127). Routledge. Collins, P. H., & Bilge, S. (2016). Intersectionality: Key concepts. Polity Press. Costa, L. M., & Leong, K. J. (2012). Introduction critical community engagement: Feminist pedagogy meets civic engagement. Feminist Teacher, 22(3), 171–180. https://doi.org/10.5406/femteacher.22.3.0171 Costa, L., Voronka, J., Landry, D., Reid, J., Mcfarlane, B., Reville, D., & Church, K. (2012). “Recovering our stories”: A small act of resistance. Studies in Social Justice, 6(1), 85. https://doi.org/10.26522/ssj.v6i1.1070 Creese, G., & Frisby, W. (Eds.). (2011). Feminist community research: Case studies and methodologies. UBC Press. Crenshaw, K. (1991). Mapping the margins: Intersectionality, identity politics, and violence against women of color. Stanford Law Review, 1241–1299. Crenshaw, K. (1989). Demarginalizing the intersection of race and sex: A Black feminist critique of antidiscrimination doctrine, feminist theory, and antiracist politics. In Feminist legal theory (pp. 57–80). Routledge. Davis, K. (2008). Intersectionality as buzzword: A sociology of science perspective on what makes a feminist theory successful. Feminist Theory, 9(1), 67–85. https://doi.org/10.1177/1464700108086364

Engaging Communities de Leeuw, S., Cameron, E. S., & Greenwood, M. L. (2012). Participatory and community-based research, Indigenous geographies, and the spaces of friendship: A critical engagement. The Canadian Geographer, 56(2), 180–194. https://doi.org/10.1111/j.1541-0064.2012.00434.x Dhamoon, R. K. (2011). Considerations on mainstreaming intersectionality. Political Research Quarterly, 64(1), 230–243. https://doi.org/10.1177/1065912910379227 Fernández-Aballí Altamirano, A. (2016). Where is Paulo Freire? International Communication Gazette, 78(7), 677–683. https://doi.org/10.1177/1748048516655722 Forde, S. D., Lee, D. S., Mills, C., & Frisby, W. (2015). Moving towards social inclusion: Manager and staff perspectives on an award winning community sport and recreation program for immigrants. Sport Management Review, 18(1), 126–138. https://doi.org/10.1016/j.smr.2014.02.002 Freire, P. (1968). Pedagogy of the oppressed. Seabury Press. Frisby, W., Alexander, T., & Taylor, J. (2010). Play is not a frill: Poor youth facing the past, present, and future of public recreation in Canada. In M. Gleason, T. Myers, L. Paris & V. Strong-Boag (Eds.), Lost kids: Vulnerable children and youth in Canada, the US, and Australia, 1900 to the present (pp. 215–229). UBC Press. Frisby, W., Maguire, P., & Reid, C. (2009). The “f ” word has everything to do with it: How feminist theories inform action research. Action Research, 7(1), 13–19. https://doi.org/10.1177/1476750308099595 Guta, A., Flicker, S., & Roche, B. (2013). Governing through community allegiance: A qualitative examination of peer research in community-based participatory research. Critical Public Health, 23(4), 432–451. https://doi.org/10.1080/09581596.2012.761675 Guta, A., Strike, C., Flicker, S., Murray, S. J., Upshur, R., & Myers, T. (2014). Governing through communitybased research: Lessons from the Canadian HIV research sector. Social Science & Medicine, 123, 250–261. https://doi.org/10.1016/j.socscimed.2014.07.028 Gutiérrez, J. (2016). Participatory action research (PAR) and the Colombian Peasant Reserve Zones: The legacy of Orlando Fals Borda. Policy and Practice: A Development Education Review, 22(Spring), 59–76. Hall, B. L. (2005). In from the cold? Reflections on participatory research from 1970-2005. Convergence, 38(1), 5. http://www.niace.org.uk/Publications/Periodicals/Default.htm Hancock, A. M. (2016). Intersectionality: An intellectual history. Oxford University Press. Hankivsky, O. (Ed.). (2012) An intersectionality based policy analysis framework. Institute for Intersectionality Research and Policy; Simon Fraser University. https://www.ifsee.ulaval.ca/sites/ifsee.ulaval.ca/files /Intersectionality_Hankivsky_Intersectionality-BasedPolicyAnalysis.pdf Hankivsky, O. (2014). Intersectionality 101. http://vawforum-cwr.ca/sites/default/files/attachments /intersectionallity_101.pdf Hankivsky, O., & Christoffersen, A. (2008). Intersectionality and the determinants of health: A Canadian perspective. Critical Public Health, 18(3), 271–283. https://doi.org/10.1080/09581590802294296 Harding, S. G. (1986). The science question in feminism. Cornell University Press. Harding, S. G. (Ed.). (2004). The feminist standpoint theory reader: Intellectual and political controversies. Routledge. Holmes, C. (2016). Exploring the intersections between violence, place and mental health in the lives of trans and gender nonconforming people in Canada. In M. Giesbrecht & V. Crooks (Eds.), Place, health and diversity: Learning from the Canadian perspective (pp. 53–75). Routledge. hooks, b. (1994). Teaching to transgress: Education as the practice of freedom. Routledge. hooks, b. (2000). Feminist theory: From margin to center. Pluto Press. Horowitz, C. R., Robinson, M., & Seifer, S. (2009). Community-based participatory research from the margin to the mainstream: Are researchers prepared? Circulation, 119(19), 2633–2642. https://doi. org/10.1161/CIRCULATIONAHA.107.729863 Hunt, S. (2015). The embodiment of self-determination: Beyond the gender binary. In M. Greenwood, S. de Leeuw, N. M. Lindsay, & C. Reading (Eds.), Determinants of Indigenous peoples’ health in Canada: Beyond the social (pp. 104–119). Canadian Scholars’ Press. Hunt, S., & Holmes, C. (2015). Everyday decolonization: Living a decolonizing queer politics. Journal of Lesbian Studies, 19(2), 154–172. https://doi.org/10.1080/10894160.2015.970975

251

252

Morrow, Reid, Landy, Chatterjee, Frisby, Holmes, and Yap Janes, J. E. (2016). The “will to participate”: Governmentality, power, and community-based participatory research. Intersectionalities: A Global Journal of Social Work Analysis, Research, Polity, and Practice, 5(1), 110–125. https://journals.library.mun.ca/ojs/index.php/IJ/article/view/1419/1275 Josewski, V. (2017). A “third space” for doing social justice research. In M. Morrow & L. H. Malcoe (Eds.), Critical inquiries for social justice in mental health (pp. 60–86). University of Toronto Press. Kliewer, B. W. (2013). Why the civic engagement movement cannot achieve democratic and justice aims. Michigan Journal of Community Service Learning, 19(2), 72–79. https://files.eric.ed.gov/fulltext/EJ1013498.pdf LeBaron, M., & Pillay, V. (2006). Conflict across cultures: A unique experience of bridging differences. Intercultural Press. Lee, S. M. (2005). Physical activity among minority populations: What health promotion practitioners should know – A commentary. Health Promotion Practice, 6(4), 447–452. https://doi.org/10.1177 /1524839904263818 Lee, D., Frisby, W., & Ponic, P. (2014). Promoting the mental health of immigrant women by transforming community physical activity. In L. Greaves, A. Pederson, & N. Poole (Eds.), Gender transformative health promotion for women (pp. 111–128). Canadian Scholars Press. Longino, H. (1989) Feminist critiques of rationality: Critiques of science or philosophy of science? Women’s Studies International Forum, 12 (3), 261–269. https://doi.org/10.1016/S0277-5395(89)80004-4 Maguire, P. (1987). Doing participatory research: feminist approach. NWSA Perspectives, 535–538. https:// scholarworks.umass.edu/cgi/viewcontent.cgi?article=1005&context=cie_participatoryresearchpractice McTaggart, R. (1991). Principles for participatory action research. Adult Education Quarterly, 41(3), 168–187. https://doi.org/10.1177/0001848191041003003 Minkler, M., & Wallerstein, N. (Eds.). (2008). Community-based participatory research for health: From process to outcomes (2nd ed.). Jossey Bass. Morrow, M., & Malcoe, L. H. (Eds.). (2017). Critical inquiries for social justice in mental health. University of Toronto Press. Olssen, M., & Peters, M. A. (2005). Neoliberalism, higher education and the knowledge economy: From the free market to knowledge capitalism. Journal of Education Policy, 20(3), 313–345. https://doi.org /10.1080/02680930500108718 Palacios, L. (2016). Challenging convictions: Indigenous and Black race-radical feminists theorizing the Carceral State and abolitionist praxis in the United States and Canada. Meridians: Feminism, Race, Transnationalism, 15(1), 137–165. https://doi.org/10.2979/meridians.15.1.08 Reid, C., & Frisby, W. (2007). Continuing the journey. Articulating dimensions of feminist participatory action research. In P. Reason & H. Bradbury (Eds.), Handbook of action research: Participative inquiry and practice (2nd ed., pp. 93–105). Sage Publications. Reid, C., & Gillberg, C. (2014). Feminist participatory action research. In D. Coghlan & M. B. Miller (Eds.), The SAGE encyclopedia on action research. Vol. 1 (pp. 343–346). SAGE Publications. Ristock, J., & Pennell, J. (1996) Community research as empowerment: Feminist links, postmodern interruptions. Oxford University Press. Robinson, T. (2000). Dare the school build a new social order? Michigan Journal of Community Service Learning, 7(1). http://hdl.handle.net/2027/spo.3239521.0007.116 Rossiter, K., & Morrow, M. (2011). Intersectional frameworks in mental health: Moving from theory to practice. In O. Hankivsky (Ed.), Health inequities in Canada: Intersectional frameworks and practices (pp. 312–330). UBC Press. 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. Journal of Aboriginal Health, 1(1). https://doi.org/10.3138/ijih.v1i1.28934 Sharpe, E., Mair, H., & Yuen, F. (2016). Community development: Applications for leisure, sport and tourism. Venture Publishing.

Engaging Communities Shultz, L., & Kajner, T. (Eds.). (2013). Engaged scholarship: The politics of engagement and disengagement. Springer Science & Business Media. Smith, L. T. (1999). Decolonizing methodologies: Research and Indigenous peoples. Zed Books. Sohng, S. S. L. (1996). Participatory research and community organizing. Journal of Sociology and Social Welfare, 23(4), 77–97. https://scholarworks.wmich.edu/jssw/vol23/iss4/6/ Spade, D. (2011). Normal life: Administrative violence, critical trans politics and the limits of law. South End Press. Strand, K., Marullo, S., Cutforth, N., Stoecker, R., & Donohue, P. (2003). Principles of best practice for community-based research. Michigan Journal of Community Service Learning, 9(3). http://hdl.handle.net /2027/spo.3239521.0009.301 Taylor, C., & Ristock, J. L. (2011). “We are all treaty people”: An anti-oppressive research ethics of solidarity with Indigenous LGBTQ people living with partner violence. In J. L. Ristock (Ed.), Intimate partner violence in LGBTQ lives (pp. 301–319). Routledge. Travers, R., Pyne, J., Bauer, G., Munro, L., Giambrone, B., Hammond, R., & Scanlon, K. (2013). “Community control” in CBPR: Challenges experienced and questions raised from the Trans PULSE project. Action Research, 11(4), 403–22. https://doi.org/10.1177/1476750313507093 Tremblay, M. S., Bryan, S. N., Perex, C. E., Ardem, C. I., & Katzmarzyk, P. T. (2006). Physical activity and immigrant status: Evidence from the Canadian Community Health Survey. Canadian Journal of Public Health, 97(4), 277–282. https://doi.org/10.1007/BF03405603 Tuck, E., & Guishard, M. (2013). Uncollapsing ethics: Racialized sciencism, settler coloniality and an ethical framework of decolonial participatory action research. In T. M. Kress, C. Mallot, & B. Porfilio (Eds.), Challenging status quo retrenchment: New directions in critical qualitative research (pp. 3–27). Information Age Publishing. Turner, D., & Moosa-Mitha, M. (2005). Challenge for change: An anti-oppressive approach to conflict resolution. University of Victoria Press. Vissandjee, B., Thurston, W., Apale A., & Nahar, K. (2007). Women’s health at the intersection of gender and the experience of international migration. In M. M. Morrow, O. Hankivsky, & C. Varcoe (Eds.), Women’s health in Canada: Critical perspectives on theory and policy (pp. 221–243). University of Toronto Press. Voronka, J., Harris, D. W., Grant, J., Komaroff, J., Boyle, D., & Kennedy, A. (2014). Un/helpful help and its discontents: Peer researchers paying attention to street life narratives to inform social work policy and practice. Social Work in Mental Health, 12(3), 249–279. https://doi.org/10.1080/15332985.2013.875504 Wang, C., & Burris, M. A. (1997). Photovoice: Concept, methodology, and use for participatory needs assessment. Health Education & Behavior, 24(3), 369–387. https://doi.org/10.1177/109019819702400309 White, C., & Goldberg, J. (2006). Expanding our understanding of gendered violence: violence against trans people and their loved ones. Canadian Women’s Studies Journal, 25(1–2), 124–128. https://cws.journals .yorku.ca/index.php/cws/article/view/5968/5157 Winslade, J., & Monk, J. W. (2000). Theoretical and philosophical issues in narrative mediation. Narrative mediation: A new approach to conflict resolution (pp. 31–56). Jossey-Bass.

253

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

Intersectionality-Based Quantitative Health Research and Sex/Gender Sensitivity

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.

255

256

Emily Mena and Gabriele Bolte

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

257

258

Emily Mena and Gabriele Bolte

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/

259

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.

261

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

Physical Activity

Smoking

b

c

d

e

f

g

h

i

j

k

l

m

n

o

p

✓

✓

✓

✓

✓

✓

✓

✓

✓

✓

OPERATIONALIZATION Binary

✓

✓

✓

✓

✓

Binary: only women

✓

✓

✓

✓

✓

✓

✓

✓

DATA COLLECTION Self-reported/self-identified

✓

✓

Register (clinical, official)

✓

✓

Not specified

✓

✓

✓

✓

✓

✓

✓

INDICATION OF FORCED CHOICE Forced choice

✓

✓

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

b

c

d

e

Employment

Education

Physical Activity

Smoking f

g

h

i

j

k

l

m

n

C d C

C

C

p

C D d

C

C

C

+

d

o

d

∆ d

d

d

d

d

C

C

C

C

d

d

d

d

C D ∆ d

D « d

d

d

C D d

C

Available income Family constellation

Financial responsibilities Care responsibilities Housework responsibilities Stress level/management

(d)

Social support/conflict

(d)

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

Smoking

Physical Activity

a

b

c

d

e

f

g

h

i

j

k

l

m

n

o

p

… test hypotheses

✓

✓

-

-

-

✓

✓

-

-

-

-

✓

-

-

✓

-

… be integrated in various parts of the paper

✓

✓

-

-

-

✓

✓

-

-

✓

-

✓

-

✓

✓

✓

-

-

-

-

-

-

-

-

-

-

-

-

-

-

-

-

… interpret empirical findings

✓

✓

✓

✓

-

✓

✓

-

-

-

-

-

✓

✓

✓

… understand health problems

✓

✓

✓

✓

-

✓

✓

-

-

✓

-

✓

-

-

✓

✓

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

-

-

-

-

-

-

-

-

-

-

-

-

-

-

-

-

… be integrated in traditional gender-blind theories

-

-

-

-

-

-

-

-

-

-

-

-

-

-

-

-

… criticize other feminist theories

-

-

-

-

-

-

-

-

-

-

-

-

-

-

-

-

… develop gender concept and models

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

263

264

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

a

b

c

d

e

GENDER (intra-individual)

✓

✓

✓

-

-

Psychological/cognitive

✓

✓

-

-

Physical/biological

-

-

-

Behavioural

-

-

-

Privilege/resource

-

-

GENDER (inter-individual)

✓

Gender norms

f

Physical Activity

g

h

i

j

k

✓

-

-

-

✓

-

-

✓

-

-

-

-

-

-

-

-

-

-

-

✓

-

-

✓

-

-

-

✓

-

-

-

-

-

-

✓

✓

✓

-

✓

✓

-

-

✓

✓

✓

-

✓

✓

Sociocultural

✓

✓

-

-

-

✓

Discrimination

-

✓

✓

✓

-

Social networks/capital

✓

✓

-

-

Privilege/resource

-

-

-

Socioeconomic

-

-

Environmental

-

GENDER EQUALITY

-

GENDER EQUITY EMBODIMENT

l

m

n

o

p

✓

-

-

✓

✓

✓

-

-

✓

-

-

✓

-

-

-

-

✓

-

-

-

-

-

✓

-

-

-

-

-

-

-

-

✓

-

✓

-

✓

✓

✓

-

-

-

-

-

-

✓

✓

✓

✓

-

-

✓

-

✓

-

-

✓

-

-

-

-

-

-

-

-

-

-

✓

✓

-

-

-

-

-

-

-

-

-

-

✓

-

-

-

-

-

-

-

✓

-

-

-

✓

-

-

-

-

-

-

-

-

-

-

-

-

-

✓

-

✓

-

-

-

-

-

-

-

-

✓

-

-

-

-

-

-

✓

-

-

-

✓

-

-

-

-

-

-

-

✓

-

✓

-

-

-

✓

-

-

-

-

-

-

-

✓

-

-

-

-

-

-

✓

✓

-

-

✓

-

✓

-

-

-

-

Eco-social

-

-

-

-

-

-

-

-

-

✓

-

-

-

-

-

-

Social (behavioural)

-

-

-

-

-

✓

✓

-

-

✓

-

-

-

-

-

-

Psychobiological

-

-

-

-

-

-

-

-

-

-

-

✓

-

-

-

-

SEX

-

-

-

✓

✓

-

-

-

-

-

-

✓

-

-

-

-

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

265

266

Emily Mena and Gabriele Bolte

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

267

268

Emily Mena and Gabriele Bolte

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?

REFERENCES Aldrich, M. C., Hidalgo, B., Widome, R., Briss, P., Brownson, R. C., & Teutsch, S. M. (2015). The role of epidemiology in evidence-based policy making: A case study of tobacco use in youth. Annals of Epidemiology, 25(5), 360–365. https://doi.org/10.1016/j.annepidem.2014.03.005 Annandale, E., & Hunt, K. (2000). Gender inequalities in health. Open University Press. 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 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, 12(5), e0178043. https://doi.org/10.1371/journal.pone.0178043 Bauer, G. R., & Scheim, A. I. (2019). Advancing quantitative intersectionality research methods: Intracategorical and intercategorical approaches to shared and differential constructs. Social Science & Medicine, 226, 260–262. https://doi.org/10.1016/j.socscimed.2019.03.018 Bauer, G. R., & Scheim, A. I. (2019). Methods for analytic intercategorical intersectionality in quantitative research: Discrimination as a mediator of health inequalities. Social Science & Medicine, 226, 236–245. https://doi.org/10.1016/j.socscimed.2018.12.015 Berkman, L. F., & Kawachi, I. (2000). A historical framework for social epidemiology. In L. F. Berkman & I. Kawachi, (Eds.), Social epidemiology (pp. 3–12). Oxford University Press. https://doi.org/10.1093 /ije/30.3.635-a

Intersectionality-Based Quantitative Health Research and Sex/Gender Sensitivity Bolte, G., & Lahn, U. (2015). Geschlecht in der Public-Health-Forschung zu gesundheitlichen Ungleichheiten: Potenziale und Begrenzungen des Intersektionalitätsansatzes. Gender, 2, 51–67. https://doi.org/10.3224 /gender.v7i2.19312 Bowleg, L. (2012). The problem with the phrase women and minorities: Intersectionality—an important theoretical framework for public health. American Journal of Public Health, 102(7), 1267–1273. https:// doi.org/10.2105/AJPH.2012.300750 Crenshaw, K. W. (1994). Mapping the margins: Intersectionality, identity politics, and violence against women of color. In R. Mykitiuk & M. A. Fineman (Eds.), The public nature of private violence (pp. 93–118). Routledge. Dubrow, J. K. (2008). How can we account for intersectionality in quantitative analysis of survey data? Empirical illustration for Central and Eastern Europe. ASK. Research & Methods, 17, 85–100. Evans, C. R. (2019). Modeling the intersectionality of processes in the social production of health inequalities. Social Science & Medicine, 226, 249–253. https://doi.org/10.1016/j.socscimed.2019.01.017 Evans, C. R., & Erickson, N. (2019). Intersectionality and depression in adolescence and early adulthood: A MAIHDA analysis of the national longitudinal study of adolescent to adult health, 1995-2008. Social Science & Medicine, 220, 1–11. https://doi.org/10.1016/j.socscimed.2018.10.019 Fisk, S. A., Mulinari, S., Wemrell, M., Leckie, G., Perez Vicente, R., & Merlo, J. (2018). Chronic obstructive pulmonary disease in Sweden: An intersectional multilevel analysis of individual heterogeneity and discriminatory accuracy. SSM Population Health, 4, 334–346. https://doi.org/10.1016/j.ssmph.2018.03.005 Galea, S., & Link, B. G. (2013). Six paths for the future of social epidemiology. American Journal of Epidemiology, 178(6), 843–849. https://doi.org/10.1093/aje/kwt148 Hammarström, A., & Hensing, G. (2018). How gender theories are used in contemporary public health research. International Journal for Equity in Health, 17(1), 34. https://doi.org/10.1186/s12939-017-0712-x Hammarström, A., Johansson, K., Annandale, E., Ahlgren, C., Aléx, L., Christianson, M., Elwér, S., Eriksson, C., Fjellman-Wiklund, A., Gilenstam, K., Gustafsson, P. E., Harryson, L., Lehti, A., Stenberg, G., & Verdonk, P. (2014). Central gender theoretical concepts in health research: the state of the art. Journal of Epidemiology and Community Health, 68(2), 185. https://doi.org/10.1136/jech-2013-202572 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 Harawa, N. T., & Ford, C. L. (2009). The foundation of modern racial categories and implications for research on black/white disparities in health. Ethnicity & Disease, 19(2), 209–217. Heise, L., Greene, M. E., Opper, N., Stavropoulou, M., Harper, C., Nascimento, M., Zewdie, D., Darmstadt, G. L., Greene, M. E., Hawkes, S., Heise, L., Henry, S., Heymann, J., Klugman, J., Levine, R., Raj, A., & Rao Gupta, G. (2019). Gender inequality and restrictive gender norms: framing the challenges to health. The Lancet, 393(10189), 2440–2454. https://doi.org/10.1016/S0140-6736(19)30652-X Hidalgo, B., & Goodman, M. (2013). Multivariate or multivariable regression? American Journal of Public Health, 103(1), 39–40. https://doi.org/10.2105/AJPH.2012.300897 Johnson, J. L., Greaves, L., & Repta, R. (2007). Better science with sex and gender: A primer for health research. Women’s Health Research Network. Keyes, K., & Galea, S. (2015). What matters most: quantifying an epidemiology of consequence. Annals of Epidemiology, 25(5), 305–311. https://doi.org/10.1016/j.annepidem.2015.01.016 King, D. (1988). Multiple jeopardy, multiple consciousness: The context of a black feminist Ideology. Journal of Culture and Society, 14(1), 42–72. https://doi.org/10.1086/494491 Krieger, N. (1990). Racial and gender discrimination: Risk factors for high blood pressure? Social Science & Medicine, 30(12), 1273–1281. https://doi.org/10.1016/0277-9536(90)90307-E Lemon, S. C., Roy, J., Clark, M. A., Friedmann, P. D., & Rakowski, W. (2003). Classification and regression tree analysis in public health: Methodological review and comparison with logistic regression. Annals of Behavioral Medicine, 26(3), 172–181. https://doi.org/10.1207/S15324796ABM2603_02

269

270

Emily Mena and Gabriele Bolte Lizotte, D. J., Mahendran, M., Churchill, S. M., & Bauer, G. R. (2019). Math versus meaning in MAIHDA: A commentary on multilevel statistical models for quantitative intersectionality. Social Science & Medicine, Article 112500. https://doi.org/https://doi.org/10.1016/j.socscimed.2019.112500 Lofters, A., & O’Campo, P. (2012). Differences that matter. In P. O’Campo & J. R. Dunn (Eds.), Rethinking social epidemiology: Towards a science of change (pp. 93–109). Springer. https://doi.org/10.1007/978-94 -007-2138-8_5 March, D., & Susser, E. (2006). The eco- in eco-epidemiology. International Journal of Epidemiology, 35(6), 1379–1383. https://doi.org/10.1093/ije/dyl249 McCall, L. (2005). The complexity of intersectionality. SIGNS: Journal of Women in Culture and Society, 30(31), 1771–1802. https://doi.org/10.1086/426800 Mena, E., & Bolte, G., on behalf of the ADVANCE GENDER Study Group. (2019). Intersectionalitybased 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; https://doi.org/10.1186/s12939-019-1098-8 Merlo, J. (2003). Multilevel analytical approaches in social epidemiology: Measures of health variation compared with traditional measures of association. Journal of Epidemiology and Community Health, 57(8), 550. https://doi.org/10.1136/jech.57.8.550 Meyer, I. H. (1995). Minority stress and mental health in gay men. Journal of Health and Social Behaviour, 36(1), 38–56. https://doi.org/10.2307/2137286 O’Campo, P., & Dunn, J. R. (2012). Introduction. In P. O’Campo & J. R. Dunn (Eds.), Rethinking social epidemiology: Towards a science of change (pp. 1–19). Springer. https://doi.org/10.1007/978-94-007 -2138-8_5 O’Neill, J., Tabish, H., Welch, V., Petticrew, M., Pottie, K., Clarke, M., Evans, T., Pardo Pardo, J., Waters, E., White, H., & Tugwell, P. (2014). Applying an equity lens to interventions: using PROGRESS ensures consideration of socially stratifying factors to illuminate inequities in health. Journal of Clinical Epidemiology, 67(1), 56–64. https://doi.org/10.1016/j.jclinepi.2013.08.005 Östlin, P., Schrecker, T., Sadana, R., Bonnefoy, J., Gilson, L., Hertzman, C., Kelly, M. P., Kjellstrom, T., Labonté, R., Lundberg, O., Muntaner, C., Popay, J., Sen, G., & Vaghri, Z. (2011). Priorities for research on equity and health: Towards an equity-focused health research agenda. PLOS Medicine, 8(11), Article e1001115. https://doi.org/10.1371/journal.pmed.1001115 Pelletier, R., Ditto, B., & Pilote, L. (2015). A composite measure of gender and its association with risk factors in patients with premature acute coronary syndrome. Psychosomatic Medicine, 77(5), 517–526. https://doi.org/10.1097/PSY.0000000000000186 Pöge, K., Rommel, A., Mena, E., Holmberg, C., Saß, A.-C., & Bolte, G. (2019). AdvanceGender – Verbundprojekt für eine geschlechtersensible und intersektionale Forschung und Gesundheitsberichterstattung. Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz, 62(1), 102–107. https://doi.org/10.1007/s00103-018-2855-3 Purdie-Vaughns, V., & Eibach, R. P. (2008). Intersectional invisibility: The distinctive advantages and disadvantages of multiple subordinate-group identities. Sex Roles, 59(5), 377–391. https://doi.org /10.1007/s11199-008-9424-4 Schwartz, S., Susser, E., & Susser, M. (1999). A future for epidemiology? Annual Review of Public Health, 20(1), 15–33. https://doi.org/10.1146/annurev.publhealth.20.1.15 Sen, G., & Östlin, P. (2010). Gender equity in health: the shifting frontiers of evidence and action (Vol. 5). Routledge. Seng, J. S., Lopez, W. D., Sperlich, M., Hamama, L., & Reed Meldrum, C. D. (2012). Marginalized identities, discrimination burden, and mental health: Empirical exploration of an interpersonal-level approach to modeling intersectionality. Social Science & Medicine, 75(12), 2437–2445. https://doi.org/10.1016 /j.socscimed.2012.09.023

Intersectionality-Based Quantitative Health Research and Sex/Gender Sensitivity Shields, S. A. (2008). Gender: An intersectionality perspective. Sex Roles, 59(5), 301–311. https://doi.org/10.1007 /s11199-008-9501-8 Simon, P. (2012). Collecting ethnic statistics in Europe: A review. Ethnic and Racial Studies, 35(8), 1366–1391. https://doi.org/10.1080/01419870.2011.607507 Tate, C. C., Ledbetter, J. N., & Youssef, C. P. (2013). A two-question method for assessing gender categories in the social and medical sciences. The Journal of Sex Research, 50(8), 767–776. https://doi.org/10.1080 /00224499.2012.690110 Tricco, A. C., Lillie, E., Zarin, W., O’Brien, K. K., Colquhoun, H., Levac, D., Moher, D., Peters, M. D. J., Horsley, T., Weeks, L., Hempel, S., Akl, E. A., Chang, C., McGowan, J., Stewart, L., Hartling, L., Aldcroft, A., Wilson, M. G., Garritty, C., Lewin, S., Godfrey, C. M., Macdonald, M. T., Langlois, E. V., Soares-Weiser, K., Moriarty, J., Clifford, T., Tuncalp, O., & Straus, S. E. (2018). PRISMA extension for scoping reviews (PRISMA-ScR): Checklist and explanation. Annals of Internal Medicine, 169(7), 467–473. https://doi.org/10.7326/M18-0850 Veenstra, G. (2011). Race, gender, class, and sexual orientation: Intersecting axes of inequality and self-rated health in Canada. International Journal of Equity in Health, 10, 3. https://doi.org/10.1186/1475-9276-10-3 Whittle, K. L., & Inhorn, M. C. (2001). Rethinking difference: A feminist reframing of gender/race/class for the improvement of women’s health research. International Journal of Health Services, 31(1), 147–165. https://doi.org/10.2190/FKJA-CXD7-V4G6-U4W9

271

This page intentionally left blank 

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

276

Benoit, Jansson, Phillips, Hallgrímsdóttir, and Vallance

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

277

278

Benoit, Jansson, Phillips, Hallgrímsdóttir, and Vallance

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

Social Influences on Injection Drug Use among Sex Workers

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

279

280

Benoit, Jansson, Phillips, Hallgrímsdóttir, and Vallance

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.

281

282

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

283

284

Benoit, Jansson, Phillips, Hallgrímsdóttir, and Vallance

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 an