The Oxford Handbook of the Sociology of Body and Embodiment 9780190842475, 9780190842499, 9780190842505, 0190842474

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T h e Ox f o r d H a n d b o o k o f

T H E SO C IOL O GY OF BODY A N D E M BODI M E N T

The Oxford Handbook of

THE SOCIOLOGY OF BODY AND EMBODIMENT Edited by

NATALIE BOERO and

KATHERINE MASON

1

1 Oxford University Press is a department of the University of Oxford. It furthers the University’s objective of excellence in research, scholarship, and education by publishing worldwide. Oxford is a registered trade mark of Oxford University Press in the UK and certain other countries. Published in the United States of America by Oxford University Press 198 Madison Avenue, New York, NY 10016, United States of America. © Oxford University Press 2021 All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, without the prior permission in writing of Oxford University Press, or as expressly permitted by law, by license, or under terms agreed with the appropriate reproduction rights organization. Inquiries concerning reproduction outside the scope of the above should be sent to the Rights Department, Oxford University Press, at the address above. You must not circulate this work in any other form and you must impose this same condition on any acquirer. Library of Congress Cataloging-in-Publication Data Names: Boero, Natalie, 1974– editor. | Mason, Katherine, editor. Title: The Oxford handbook of the sociology of body and embodiment / edited by Natalie Boero and Katherine Mason. Description: New York, NY : Oxford University Press, [2021] | Summary: “The Oxford Handbook of the Sociology of Body and Embodiment challenges the view that bodies belong to the category of “nature” and are biological, essential, and pre-social. It argues instead that bodies both shape and get shaped by human societies. As such, the body is an appropriate and necessary area of study for sociologists. The Handbook works to clarify the scope of this topic and display the innovations of research within the field. The volume is divided into three main parts: Bodies and Methodology; Marginalized Bodies; and Embodied Sociology. Sociologists contributing to the first two parts focus on the body and the ways it is given meaning, regulated, and subjected to legal and medical oversight in a variety of social contexts (particularly when the body in question violates norms for how a culture believes bodies “ought” to behave or appear). Sociologists contributing to the last part use the bodily as a lens through which to study social institutions and experiences. These social settings range from personal decisions about medical treatment to programs for teaching police recruits how to use physical force, from social movement tactics to countries' understandings of race and national identity. Many chapters throughout the book offer extended methodological reflections, providing guidance on how to conduct sociological research on the body and, at times, acknowledging the role the authors’ own bodies play in developing their knowledge of the research subject”—Provided by publisher. Identifiers: LCCN 2020018279 (print) | LCCN 2020018280 (ebook) | ISBN 9780190842475 (hardback) | ISBN 9780190842499 (epub) | ISBN 9780190842505 Subjects: LCSH: Human body—Social aspects. | Marginality, Social. Classification: LCC HM636 .O94 2020 (print) | LCC HM636 (ebook) | DDC 306.4—dc23 LC record available at https://lccn.loc.gov/2020018279 LC ebook record available at https://lccn.loc.gov/2020018280 1 3 5 7 9 8 6 4 2 Printed by Integrated Books International, United States of America.

Contents

About the Editorsix About the Contributorsxi

1. Toward a Sociology of the Body Katherine Mason and Natalie Boero

1

2. Methodologies for Categories in Motion Maxine Leeds Craig

21

3. Pregnant Embodiment and Field Research Jennifer Randles

37

4. Sensory Experience as Method Kelvin E. Y. Low and Noorman Abdullah

53

5. Mixed Methods in Body and Embodiment Research Samantha Kwan and Trenton M. Haltom

69

6. YouTube Vlogs as Illness Narratives: Methodological Consideration Natalie Kay Fullenkamp

87

7. Representations of Fatness by Experts and the Media and How This Shapes Attitudes Abigail C. Saguy

105

8. Health at Every Size (HAES™) as a Reform (Social) Movement within Public Health: A Situational Analysis Natalie Ingraham

121

9. Fat as a Floating Signifier: Race, Weight, and Femininity in the National Imaginary Sabrina Strings

145

10. Animal, Mechanical, and Me: Organ Transplantation and the Ambiguity of Embodiment Gill Haddow

165

vi   contents

11. Aging, Gender, and the Body Laura Hurd

183

12. Beyond Binary Sex and Gender Ideology Cary Gabriel Costello

199

13. Male Breast Cancer in the Public Imagination Piper Sledge

221

14. Good-Looking Men Require Hard-Working Women: The Labor of Consumption in the Grooming Industry Kristen Barber 15. Feeding and Fasting Bodies Jaita Talukdar

239 257

16. Contrasting Scientific Discourses of Skin Lightening in Domestic and Global Contexts Celeste Vaughan Curington and Miliann Kang

273

17. Unruly Bodies: Figurative Violence and the State’s Responses to the Black Panther Party Randolph Hohle

293

18. Race, Phenotype, and Nationality in Brazil and the United States Tiffany D. Joseph

309

19. The Aesthetic Labor of Ethnographers Kjerstin Gruys and David J. Hutson

327

20. Bodies That Don’t Matter, but Labor That Does: The Low-Wage Male Migrant in Singapore and Dubai Laavanya Kathiravelu 21. Embodied Spatial Practices and the Power to Care Elise Paradis, Warren Mark Liew, and Myles Leslie 22. Contesting New Markets for Bodily Knowledge: When and How Experts Draw the Line Rene Almeling 23. Managing Risky Bodies: From Pregnancy to Vaccination Jennifer A. Reich

345 361

379 397

contents   vii

24. The Artificial Pancreas in Cyborg Bodies Anthony Ryan Hatch, Julia T. Gordon, and Sonya R. Sternlieb

413

25. Contesting Lyme Disease Sonny Nordmarken

431

26. “Laying Hands” and Learning to Touch and Grab in the Police Academy Brian Lande

447

27. The Place of the Body in Resistance to Intimate Partner Violence: What Do We Know? Valli Rajah and Meg Osborn

469

Index

491

About the Editors

Natalie Boero is a Professor of Sociology at San Jose State University in San Jose, California. Her work focuses on body size, health care inequalities, and qualitative methodology. Her current research focuses on illness narratives of dialysis patients with end-stage renal disease. Her work has appeared in journals such as Body and Society, Qualitative Sociology, Critical Public Health, and Fat Studies. Her first book, Killer Fat: Media, Medicine, and Morals in the American “Obesity Epidemic,” was published by Rutgers University Press in 2012. Katherine Mason is an Assistant Professor of Sociology and Women’s & Gender Studies at Wheaton College in Massachusetts. Her research focuses on health and body inequalities, with a particular focus on how people’s care and cultivation of their bodies serves as a vector for the reproduction of social stratification. Her work has appeared in journals such as Social Problems, Social Politics, Fat Studies, and Sexuality Research and Social Policy, and she is developing a book with NYU Press on the body-care practices of working- and middle-class mothers.

About the Contributors

Noorman Abdullah  is Senior Lecturer at the Departments of Sociology and Malay Studies, National University of Singapore. His core research interests are religion and society, particularly in relation to spirit possession and everyday religiosity, deviance and social control, and sensory studies. He has also been Secretary-Treasurer of TG07 Senses and Society, International Sociological Association (ISA) since 2012. Rene Almeling  is a sociologist at Yale University with research and teaching interests in gender and medicine. She is the author of Sex Cells, an award-winning book that offers an inside look at the American market for egg donors and sperm donors. Her second book, GUYnecology: The Missing Science of Men’s Reproductive Health, is being published in 2020 by University of California Press. Her articles have appeared in American Sociological Review, Annual Review of Sociology, Journal of Health and Social Behavior, and Gender & Society. She is a recipient of the Arthur Greer Memorial Prize for Outstanding Scholarly Research, one of Yale’s highest honors, and holds courtesy appointments in American Studies, the Yale School of Public Health (Health Policy), and the Yale School of Medicine (History of Medicine). Kristen Barber is Associate Professor of Sociology and Director of the Women, Gender, and Sexuality Studies Program at Southern Illinois University, Carbondale. She received her PhD from University of Southern California and joined the SIUC faculty in 2011. Her research expertise lies in gender, organizations, work, and culture, with a focus on what everyday boundary-crossing behavior can teach us about complex systems of inequality. Barber is Editor of the journal Men and Masculinities, has served as an elected member of the American Sociological Association’s council for the section on Sex and Gender, is past council member for the ASA section on Sociology of the Body & Embodiment, and is Chair for the ASA section on Race, Gender, and Class. She is author of Styling Masculinity: Gender, Class, and Inequality in the Men’s Grooming Industry (Rutgers University Press, 2016), coauthor of Gendered Worlds, fourth edition (Oxford University Press, 2019), and her articles have appeared in Gender & Society, Contexts, Journal of Contemporary Ethnography, and others. Cary Gabriel Costello is Associate Professor of Sociology and Director of the LGBTQ+ Studies Program at the University of Wisconsin, Milwaukee. Costello engages in research in embodied experience and interventions into embodied identity. In one line of research, Costello studies the regulation of sex and gender through medical interventions into the bodies of intersex and transgender people. In another, ze

xii   about the contributors examines embodiment in virtual settings. In a longitudinal study of avatar embodiment in the virtual world of Second Life, Costello studies how identification with the avatar body facilitates sensation in virtual flesh, and the ways in which avatar identification impacts people’s real-life experiences. Maxine Leeds Craig  is Professor in the Sociology Department at the University of California, Davis. She studies everyday embodied practices to investigate social for­ mations of race, gender, and class. She received her doctorate in Sociology from the University of California, Berkeley. She is the author of Sorry I Don’t Dance: Why Men Refuse to Move (Oxford University Press 2014) and Ain’t I a Beauty Queen? Black Women, Beauty, and the Politics of Race (Oxford University Press, 2002). Celeste Vaughan Curington  is Assistant Professor of Sociology at North Carolina State University. She is an intersectional researcher whose several lines of sociological inquiry examine race, class and gender through the lens of care labor and migration, family, and interracial/intra-racial intimacy, using both qualitative and quantitative methods. She has forthcoming and published works in a variety of academic outlets, including the American Sociological Review, Sociology of Race and Ethnicity, Du Bois Review: Social Science Research on Race, Contexts, Race and Social Problems, and Symbolic Interaction. She has a forthcoming co-authored book, The Dating Divide: Race and Desire in the Era of Online Romance, with University of California Press. Her most current book project analyzes Cape Verdean eldercare workers’ struggles and resiliencies as paid and unpaid caregivers, migrants, mothers, and racialized workers in a former colonial metropole in Portugal. Natalie Kay Fullenkamp  is a PhD student in the Department of Sociology at the University of New Mexico. She studies the mutual shaping of visual, discursive practices and medico-scientific work. Her research investigates cultural representations of health and illness, as well as constructions of expertise that undergird knowledge transmission. Julia  T.  Gordon  received her BA with honors from Wesleyan University in Biology and Science in Society in 2018. She worked as a clinical research intern at The Mount  Sinai Hospital Inflammatory Bowel Disease Center in New York and has coauthored several peer- reviewed clinical publications in the areas of IBD psychosocial management, biologic drug therapy, and quality improvement. Her research examines the role and impact of external medical devices and personalized drug therapies on the physician–patient relationship and the lived experiences of patients with chronic noncommunicable diseases. Kjerstin Gruys  is Assistant Professor of Sociology at the University of Nevada, Reno. Her research broadly explores the relationship between physical appearance and social inequality, with a particular focus on gender as it intersects with race/ethnicity, class, sexuality, age, and body size. Her research—empirically grounded in ethnography, indepth interviews, content analyses, and the occasional experiment—has been published in Social Problems, Gender & Society, Sex Roles, and Social Science & Medicine, among

about the contributors   xiii others. She is currently developing a book manuscript that explores the history and social repercussions of “vanity sizing” in the US ready-to-wear fashion industry. Gill Haddow is a Senior Lecturer, based in Science, Technology, and Innovation Studies at the University of Edinburgh, UK. Her recent Wellcome Trust funded project, “Animal, Mechanical and Me: The Search for Replaceable Hearts,” was a sociological research project that explored people’s views and experiences of different procedures that might repair, replace, or regenerate the body. She is currently writing a book based on these findings, called Embodiment and the Everyday Cyborg: Technologies of Altered Subjectivity. Trenton M. Haltom  is a PhD student in the Department of Sociology at the University of Nebraska–Lincoln. His work focuses on men and masculinity, sexuality, the body, work and occupations, and the sociology of sport. Trenton’s research can be found in the Journal of Men’s Studies, Journal of College Student Development, and online in “The Society Pages” and MEL Magazine. His book chapter, “Give Us a Twirl: Male Baton Twirlers’ Embodied Resistance in a Feminized Terrain,” is in press in Body Battlegrounds: Transgressions, Tensions, and Transformations (Vanderbilt University Press), edited by Chris Bobel and Samantha Kwan. Anthony Ryan Hatch is Associate Professor of Science in Society at Wesleyan University, where is he also affiliated with the Department of African American Studies, Department of Sociology, and Environmental Studies. He is a sociologist who studies the production of knowledge about health and the uses of technology in medicine and is currently investigating the environmental causes of type 1 and type 2 diabetes. He is the author of Blood Sugar: Racial Pharmacology and Food Justice in Black America (University of Minnesota, 2016) and Silent Cells: The Secret Drugging of Captive America (University of Minnesota, 2019). Randolph Hohle  is Associate Professor of Sociology at Fredonia (SUNY), where he researches and teaches on the topics of racism and neoliberalism, embodiment and citizenship, urban development, and the rust belt. He is author of Racism in the Neoliberal Era: A Meta History of Elite White Power (Routledge, 2017), Race and the Origins of American Neoliberalism (Routledge, 2015), and Black Citizenship and Authenticity in the Civil Rights Movement (Routledge, 2012), as well as coauthor of The New Urban Sociology, sixth edition (Routledge, 2019). His work has also appeared in The Sociological Quarterly, Sociology Compass, Sociological Forum, and others. Laura Hurd  is Professor in the School of Kinesiology at the University of British Columbia. Her work examines how older adults’ perceptions and experiences of their aging bodies are shaped and constrained by age, gender, and health norms. She is the author of Facing Age: Women Growing Older in Anti-Aging Culture (2011) and has published numerous articles on the impact of ageism, ableism, gender ideals, healthism, heterosexism, sexuality, and social position on older men’s and women’s body image, appearance management practices, everyday embodiment, and engagement in selfcare and health promotion.

xiv   about the contributors David J. Hutson  is Assistant Professor of Sociology at Penn State University–Abington. His research investigates health and fitness culture in the United States through the lens of gender, medical sociology, and the body. He has recently published a content analysis exploring historical categories of body weight in the nineteenth century (Social Science History) and a qualitative study on how “bodily capital” is used to negotiate status differences between personal trainers and clients (Qualitative Sociology). Currently, he is conducting interviews with pregnant and recently pregnant women to explore the experience of putting on and trying to take off “baby weight.” Natalie Ingraham  is an Assistant Professor of Sociology at California State University, East Bay. She earned her PhD in Sociology from UC San Francisco in 2016. Her research examines the intersections of body size, gender, sexuality, and health. She has also conducted qualitative research on gender and reproductive health as a staff research associate at UCSF and UC Berkeley. She holds a BS in Psychology from University of Science and Arts of Oklahoma and earned a Master of Public Health degree from Indiana University. Tiffany  D.  Joseph  is Associate Professor of Sociology and International Affairs at Northeastern University. She completed her PhD in Sociology at the University of Michigan and was a Robert Wood Johnson Foundation Health Policy Scholar at Harvard University. Her research interests explore race, ethnicity, and migration in the Americas; immigrants’ health and health care access; immigration and health policy; and the experiences of minority faculty in academia. She is the author of Race on the Move: Brazilian Migrants and the Global Reconstruction of Race (Stanford University Press, 2015), and her research has also been published in various peer-reviewed journals. Miliann Kang is Associate Professor in Women, Gender, Sexuality Studies and affiliated faculty in Sociology and Asian/Asian American Studies at the University of Massachusetts, Amherst. She also serves as Director of Diversity Advancement for the College of Humanities and Fine Arts. She is the author of The Managed Hand: Race, Gender and the Body in Beauty Service Work (University of California Press, 2010), which won awards from the American Sociological Association and the National Women’s Studies Association. In 2017–2018, she was a Fulbright Senior Scholar with Ewha University, and a Korea Foundation Fellow with Seoul National University, researching work and family issues for Asian and Asian American women in transnational contexts. Her writing has been published in Gender and Society, Contexts, Meridians, Newsweek, The Conversation, Women’s Review of Books, Huffington Post, and the Korea Times. Laavanya Kathiravelu is Assistant Professor in the School of Social Sciences at Nanyang Technological University. She received her PhD in Sociology from Macquarie University (Sydney). Her research focuses on the nexus of contemporary migration and cities and how they interact with each other in social and spatial terms. Her work aims to disrupt the victimhood discourse surrounding marginalized migrants and broaden understandings of contemporary cities with a focus on more embodied and affective modes of everyday life.

about the contributors   xv Samantha Kwan  is Associate Professor of Sociology at the University of Houston. Her research focuses on the social construction of bodies, embodied resistance, and body modification practices. She is coauthor of Framing Fat: Competing Constructions in Contemporary Culture (Rutgers University Press, 2013), coeditor of Body Battlegrounds: Transgressions, Tensions, and Transformations (Vanderbilt University Press, forthcoming), The Politics of Women’s Bodies, Fourth Edition (Oxford University Press, 2014), and Embodied Resistance: Challenging the Norms, Breaking the Rules (Vanderbilt University Press, 2011). Brian Lande  earned his PhD in sociology from UC Berkeley in 2010. Lande has been an active-duty police officer since 2007, in both rural and urban law enforcement agencies. While working as a police officer, Lande has continued to actively conduct research on decision making and social interaction. Lande is the cofounder and Chief Science Officer of Polis Solutions, Inc. Lande’s current research on police decision making and human performance, police use of force, and applications of natural language processing to the study of the police has been funded by the Bureau of Justice Assistance and the National Institute of Justice. Myles Leslie,  PhD, is Associate Director of Research, and Assistant Professor in the School of Public Policy at the University of Calgary. An institutional ethnographer focused on health care, Dr. Leslie has conducted research in Canada, the United States, England, and Saudi Arabia. Research carried out while he was a faculty member at Johns Hopkins Medicine, and in collaboration with Dr. Paradis, resulted in a Health Services Research paper describing technology policy in action on intensive care units. Since returning to Canada, Dr. Leslie has begun examining the roles technology and policy play in supporting the growing cohort of unpaid caregivers who have taken responsibility for our older adults. He is also leading research on policy implementation challenges in an era of primary health care reform. Warren Mark Liew,  PhD, is Assistant Professor in the English Language and Literature Academic Group at the National Institute of Education, Nanyang Technological University. His research interests lie at the intersections of curriculum theory, English literacy studies, performance studies, and cultural anthropology. He graduated from Stanford University in 2010. Kelvin  E.  Y.  Low  is Associate Professor and Deputy Head at the Department of Sociology, National University of Singapore. His research interests include sensory studies, migration and transnationalism, social memory and heritage, and food and foodways. Recent authored/edited books include Senses in Cities: Experiences of Urban Settings (Routledge, 2017) and Remembering the Samsui Women: Migration and Social Memory in Singapore and China (UBC Press, 2014; NUS Press, 2015). Other articles have appeared in such journals as Pacific Affairs, Ethnic and Racial Studies, Journal of Historical Sociology, and The Sociological Review. Sonny Nordmarken is a Postdoctoral Fellow in Women’s, Gender, and Sexuality Studies at the University of Houston, and he will join Georgia State University’s

xvi   about the contributors Sociology Department as Assistant Professor in 2021. His research investigates The relational processes that maintain complex inequalities in the lives of transgender people and people with chronic illness, and the strategies social actors use to resist and, in some cases, transform these operations of power. His work is published or forthcoming in Feminist Studies, Qualitative Inquiry, Transgender Studies Quarterly, the Journal of Lesbian Studies, The Research Companion to Transgender Studies, and Health Care Disparities and the LGBT Population. Meg Osborn  is a PhD student studying criminal justice at John Jay College of Criminal Justice and the CUNY Graduate Center. Her research focuses on vulnerable populations within the justice system, with an emphasis on LGBTQ+ people, women, and survivors of abuse. Elise Paradis, PhD, holds a Canada Research Chair in Collaborative Healthcare Practice and is Assistant Professor at the University of Toronto, in Pharmacy, Medicine, Sociology, and Public Health. Her research is funded by the Canadian Institutes of Health Research and the Social Sciences and Humanities Research Council of Canada, and has been published in a range of journals that includes Social Science & Medicine, Body & Society, Health Services Research, and Academic Medicine. Her research group aims to understand the rise of what she calls the “collaborative imperative” in health care delivery using historical and empirical methods, and it hopes to transform how teams work together and improve patient outcomes. She graduated from Stanford University in 2011. Valli Rajah  is an Associate Professor of sociology at John Jay College/City University of New York. Using qualitative and mixed-method designs, her research focuses on individuals’ experience of suffering and victimization, and the ways in which powerful institutions manage—or do not manage—to exert control over sufferers’ identities and practices of self-care. Much of her research concerns members of groups that defy easy categorization as either “victims” or “criminal offenders,” such as drug-involved women who suffer partner violence, individuals arrested in domestic disputes, and juveniles who were jailed while waiting for case adjudication. Her research, which is situated in feminist criminology, cultural sociology, and medical anthropology, has appeared in sociology, criminology, and public health journals. Jennifer Randles  is Associate Professor of Sociology at California State University, Fresno. Her research examines how US policies shape class, race, and gender inequalities that affect family life. Her recent work has been published in Gender & Society, the Journal of Contemporary Ethnography, the Journal of Policy Analysis and Management, Qualitative Sociology, and Sociological Perspectives. She is the author of Proposing Prosperity: Marriage Education Policy and Inequality in America (Columbia University Press, 2017). Jennifer A. Reich  is Professor of Sociology at the University of Colorado Denver. She is author of two award-winning books, Fixing Families: Parents, Power, and the Child Welfare System (2005) and Calling the Shots: Why Parents Reject Vaccines (2016); is

about the contributors   xvii coeditor of the book Reproduction and Society (2014); and has written thirty articles and book chapters that explore gender and inequality in child welfare, childhood vaccinations, reproduction, multiracial families, and public assistance. Abigail C. Saguy  is UCLA Professor of Sociology, with a courtesy appointment in the Department of Gender Studies. She is the author of What Is Sexual Harassment? From Capitol Hill to the Sorbonne (University of California Press, 2003), What’s Wrong with Fat (Oxford University Press, 2013), Come Out, Come Out, Whoever You Are (Oxford University Press, forthcoming 2020), and numerous scientific journal articles and opeds. She is currently studying—with Juliet  A.  Williams and with support from the National Science Foundation—how lawyers, activists, and journalists invoke the principle of gender neutrality to advance (or oppose) women’s rights or LGBTQ+ rights. Piper Sledge  is Assistant Professor of Sociology at Bryn Mawr College. Her research interests include gender, race, and health. Her current book project is a comparative study showing how ideologies of gendered bodies shape medical care and the ways in which patients respond to these ideologies through decisions about their bodies, using three cases: transgender men seeking preventative gynecological care, cisgender men diagnosed with breast cancer, and cisgender women with breast cancer who elect not to pursue reconstructive surgery. Sonya R. Sternlieb  received her BA from Wesleyan University in Biology and American Studies in 2018. A member of Phi Beta Kappa, she is interested in issues of public health, the intersection of science and society, and ways in which technology can ameliorate or enhance issues of access and equity. Sabrina Strings,  PhD, is Assistant Professor of Sociology at the University of California, Irvine. Her research examines how race, sex(uality), and class are inscribed on the body, such that the body itself can be marshaled to maintain social hierarchies. Her articles and essays are featured in venues including Signs: Journal of Women in Culture and Society, Feminist Media Studies, and The Feminist Wire. Her book Fearing the Black Body: The Racial Origins of Fat Phobia is forthcoming with NYU Press. Sabrina teaches courses on Feminist Theory, Sociology of the Body, Sociology of Gender, and Social Inequalities. Jaita Talukdar  is an Associate Professor in the Department of Sociology at Loyola University, New Orleans. Her research lies at the intersection of gender, culture, globalization, body, and health. In her projects, she focuses on how modern individuals interpret and, in the process, modify social and cultural meanings about body and eating. Her writing has appeared in journals such as Qualitative Sociology, Sociological Focus, Women’s Studies, International Forum, American Journal of Sociology, and Contemporary Sociology, as well as in the Routledge Handbook of Science, Technology, and Society (2014). Currently, she is investigating how the advent of American-styled gyms is transforming nationalist institutions of physical culture in the city of Kolkata.

chapter 1

Towa r d a Sociol ogy of the Body Katherine Mason and Natalie Boero

Introduction Since the 1990s, sociologists have turned, with increasing interest, toward examining the body and the social experience of embodiment. Bodies once viewed as merely the biological and material vehicles of social actors—the necessary, albeit uninteresting, fleshy conveyances that housed the self—are now being taken seriously by social scientists interested in both the social construction of various bodies as well as the experience of embodiment (Shilling  1993,  2005; Turner  1997). This growing interest led to the founding of the UK-based journal Body & Society, which published its first issue in 1995. And in 2008, the American Sociological Association recognized a new section (a subdisciplinary interest group) on Body and Embodiment. Prior to that time, Chris Shilling (1993) writes, the body was an “absent presence” throughout much of the history of sociology. Although everyone has a body, sociologists had tended to act as though our bodies are merely biological, not social. And thus, from the perspective of sociology, bodies have been largely inconsequential—we are laborers and political subjects, we have social roles and consciousnesses—but rarely are we treated as bodies. There are, of course, exceptions. When Friedrich Engels, one of sociology’s foundational thinkers, wrote about the living conditions of the British working-class people during the Industrial Revolution, he attended to the bodily experience of visiting urban slums with unusually vivid detail. He wrote, A vegetable market is held in the street, baskets with vegetables and fruits, naturally all bad and hardly fit to use obstruct the sidewalk still further, and from these, as well as from the fish-dealers’ stalls, arises a horrible smell. The houses are occupied from cellar

2   Katherine Mason and Natalie Boero to garret, filthy within and without, and their appearance is such that no human being could possibly wish to live in them . . . Heaps of garbage and ashes lie in all directions, and the foul liquids emptied before the doors gather in stinking pools. Here live the poorest of the poor, the worst paid workers with thieves and the victims of prostitution indiscriminately huddled together, the majority Irish, or of Irish extraction, and those who have not yet sunk in the whirlpool of moral ruin which surrounds them, sinking daily deeper, losing daily more and more of their power to resist the demoralizing influence of want, filth, and evil surroundings.  ([1845] 2010, 46)

Engels lingered on these physical, sensory details to evoke readers’ disgust; while he did not explicitly theorize the body, he invoked the bodily to underline his materialist critique of capitalism. Similar references to the body pop up in sociological theory across the twentieth century. In the work of authors like Georg Simmel (1997), Erving Goffman (1963), Pierre Bourdieu (1984), and Norbert Elias (1939) 1978, we see flickers of the notion that the body is more than just a vessel for the mind; it is constituted by—and constitutive of—social life. Still, for many decades the body remained in the background for sociologists—even when, during the latter half of the twentieth century, scholars from other disciplines began to produce increasingly interesting work in theorizing the body. Feminist scholars interested in sex, reproduction, body image, beauty work, and other issues often centered the female body in their analyses of women’s oppression at home and in wider society (Pitts-Taylor  2015). Although some feminists in the 1970s and 1980s raised questions about the inevitability of biological, presocial sex differences in bodies (Fausto-Sterling [1985]  2008,  1993; Lorber  1993; West and Zimmerman  1987), most focused instead on what they called gender: the cultural meanings and restrictions overlaid on what Gayle Rubin (1975, 165) calls the “biological raw material of human sex” (see also Chodorow 1978; Firestone 1970; and MacKinnon 1982). Scholar-activists seeking to understand racial oppression and disability justice, too, brought critical perspectives on topics like scientific racism and medicalization (e.g., Baynton  2013; Gilman  1985; W.  E.  B.  DuBois’s work, as described by Taylor [1981]). These writers, mobilizing analyses of culture, institutional structures, and social inequality, have challenged the supposed neutrality of science and medicine to show how these fields have historically assigned more value—indeed, more personhood—to some bodies than to others. These scholars and activists have done significant work to advance our theoretical understandings of bodies in society. They hail from interdisciplinary fields such as gender studies, disability studies, and critical race studies, as well as from a wide range of humanities disciplines like literature, history, philosophy, and more. This in­ter­dis­ci­pli­ nary approach is critical to studies of the body, yet there remains a need for a scholarly articulation of the main topics, trends, and methods in sociological approaches to the body. This volume addresses what is distinct about the sociology of the body and embodiment: its particular focus on empiricism and method.

Toward a Sociology of the Body   3

Why Bodies? The Case for Body and Embodiment Studies in Sociology The body and its study are already implicitly embedded in multiple sociological traditions (Collins 1994). For symbolic interactionists like Erving Goffman, bodies (and how we fashion them through gesture and adornment) represent one of the most important sign-bearing resources human beings bring to face-to-face interaction. He notes, for example, the difficulties of a middle-class hostess who is unsure about the social status of her guests and how she should signal her relative social position: should she wear “her best afternoon dress or her plainest evening gown” (Goffman 1963, 29)? And for Pierre Bourdieu, class cultural differences are embodied as taste, which “is an incorporated principle of classification which governs all forms of incorporation, choosing and modifying everything that the body ingests and digests and assimilates, physiologically and psychologically” (1984, 190). In this way, all social actors “read” the bodies of others they encounter as a critical first step in determining how the interaction should proceed. As Engels’s earlier quotation illustrates, within the conflict tradition, too, bodies offer a useful object of analysis as a primary target upon which power acts. For example, in Arlie Hochschild’s ([1983] 2003) study of flight attendants’ emotional labor, she describes how airlines in the 1960s and 1970s set not only strict limits on women flight attendants’ weight, docking their pay and refusing to let them board flights unless they came in under weight; they also subjected these employees to “girdle checks” (to ensure that they were wearing them), “wig checks” (to determine if women’s hair met regulations), and regulations governing the color of everything from eye shadow to underwear. These rules and their enforcement targeted women’s bodies in particular, subjecting them to strict oversight and control by employers while linking the value of their labor to the management of their bodies. More recently, sociologists interested in the intersections of bodies, power, and control have examined the social regulation of fat bodies, gender nonconforming bodies, disabled bodies, and racially “othered” bodies. In these ways, the body itself becomes a focus of sociological investigation, what we call the sociology of the body. Critically, a sociology of the body must recognize bodies as both cause and consequence of societal forces. The bodies we inhabit shape the ways people react to us, the social and physical habitats we may access; yet the social and cultural spaces where our bodies develop and reside teach us how to carry ourselves, shape our daily habits of health maintenance and grooming, even influence the way our bones grow and our genes express. Biologist Anne Fausto-Sterling, describing the hesitancy with which second-wave feminists addressed the body, writes, Feminists assigned biological (especially reproductive) differences to the word sex and gave to gender all other differences. “Sex,” however, has become the Achilles’ heel of 1970s feminism. We relegated it to the domain of biology and medicine, and biologists

4   Katherine Mason and Natalie Boero and medical scientists have spent the past thirty years expanding it into arenas we firmly believed to belong to our ally gender.  (2005, 1493)

Put another way, the feminist social constructionist model of gender has tended to treat sexed bodies as innate, unchangeable, and presocial, while treating “gender” as the social overlay of learned behaviors, roles, and meanings ascribed to “natural” sexed bodies. Fausto-Sterling challenges feminists—and social constructionists more generally— to push past this unidirectional model wherein nature/the body precedes culture and to examine the ways “our bodies physically imbibe culture” (Fausto-Sterling 2005, 1495). Taking this challenge to heart, a sociology of the body must investigate how bodies change in response to their surroundings: not just through the centuries-long proc­ess of evolution but within a single individual’s lifetime. Questions such as who, within a society, is more likely to receive adequate nutrition or to engage in strenuous physical activity can help us understand wide variations in bone structure and density. More recently, research on toxic chemical exposures and chronic stress (e.g., MacKendrick 2018) has shown that these influences—which are often a product of class stratification and other social inequalities—affect gene expression within the body through a process known as epigenetics. However, we also suggest (and in the second half of the handbook, focus on) not only a sociology of the body but also the body in sociology. This approach holds that consideration of bodies—including both the body of the researcher as well as that of the researched—can help to enrich sociological understandings of a wide range of social dynamics and institutions. In sociological subfields ranging from law to labor, and from medicine to migration, attending to the social body has the potential to newly illuminate the mechanisms that underlie our social institutions. This position—calling for the infusion of the bodily into sociological inquiry—has been championed by Loïc Wacquant and others as “carnal sociology,” which Wacquant describes has having the goal of “re-incarnat[ing] society” (Wacquant 2015, 4). Victoria Pitts-Taylor disagrees with Wacquant’s assessment that bodies have been absent from sociological work—she points to the many decades of body-aware work by feminist social scientists like Dorothy Smith (1988) and Patricia Hill Collins (1990)—but shares his view that sociology as a whole would benefit from more carefully considering bodies in social life (Pitts-Taylor 2015).

Why Sociology? The Case for a Disciplinary Approach to an Interdisciplinary Field As noted earlier, body studies has existed in disciplines and interdisciplinary fields (literary studies, feminist theory, disability studies, and more) even as sociology as a whole has paid relatively little attention to the body. At the same time, sociological

Toward a Sociology of the Body   5 perspectives—both the work of individual sociologists and the influences of sociological scholarship on writers in other disciplines—have, we suggest, already made important contributions to body studies. With this volume, we aim to identify and advance those contributions. Taken together, the chapters in this handbook elaborate an agenda for the sociology of the body and embodiment by (1) showcasing theoretically informed empirical work and the research methods sociologists use to gather data; and (2) infusing intersectional analyses of race, class, gender, and more throughout the volume (rather than cordoning off one section of the handbook to deal with “difference”). The first sociological intervention into body studies—emphasizing the empirical— both draws on one of sociology’s greatest strengths and remedies one of existing body and embodiment studies’ most visible weaknesses. Much of the existing work on body studies focuses on theories of the body and embodiment. Most notably, Bryan Turner’s (2012) edited volume, The Routledge Handbook of Body Studies, engages ontological questions about the nature of human bodies and how they have been conceptualized across multiple theoretical traditions. While Turner’s handbook serves as an important point of reference on these issues, it is also largely nonempirical. The present volume aims to build on these theoretical insights by centering theoretically informed empirical work on bodies and embodiment. Shilling (2013) notes that the greatest weakness of theories of the body is that they tend to reify the body as either a distinct and static material object, or an infinitely malleable cultural phenomenon. Sociological methods help avoid this false dualism through empirical research in which scholars grapple with both the representation and construction of bodies and the experience of embodiment. Additionally, many authors in this volume write at length about the methods with which they gather data about embodied social life, offering reflections on the affordances and shortcomings of their chosen method(s) as well as practical advice for scholars new to the field. The second intervention, infusing intersectional analyses of race, class, gender, and more, derives in large part from feminist sociological principles that urge attention to multiple vectors of power and inequality as they combine to shape the lives of individuals and communities. In line with these principles, we seek to decenter the assumption that “othered” bodies should be cordoned off from more “general” work on bodies unmarked by racial, sexual, and ability-based deviations from the norm. Simply put, empirically engaging with the body makes it virtually impossible to ignore that every body is sexed (or, as West and Zimmerman [1987] would argue, every body has characteristics that we learn to read as evidence of a person’s membership in a sex category); every body has characteristics that signify membership in a racial group; every body has a particular size, height, skin tone, ability to navigate physical obstacles, and more. And these features of every body carry consequences for the ways we are received by others, for our own sense of identity, and for the physical and social spaces we can access.

Method This handbook’s early chapters focus primarily on method, debating and elaborating the method(s) that the authors find most useful for studying the body in society. Subsequent

6   Katherine Mason and Natalie Boero chapters shift focus toward the presentation of empirical findings and analysis, but with a continuing focus on detailing their methodological choices and innovations. A more detailed chapter outline appears later in this chapter. But, given the significance of method and methodology throughout the entirety of the volume, we offer a more indepth elaboration of that theme here. Several guiding principles motivate this focus on method. First, many chapters in this volume emphasize methodological reflexivity; that is, they consider the bodies of researcher and researched alike, asking how those lived, socially situated bodies shape each person’s experience and understanding, as well as how they might shape the research relationship. This principle derives from the feminist epistemological concept of “standpoint theory.” Standpoint theory holds that no researcher is ever perfectly objective—nor should that be the goal—but, rather, that researchers’ and actors’ social realities are always grounded in their embodied and social location (or, standpoint): to what phenomena and experiences does someone’s standpoint give them particular access, and what areas of social life might they be less able to see clearly? Disability scholar Rosemarie Garland-Thomson (2002), building off of the work of Nancy Mairs (1996), ties this epistemological insight to the body even more clearly by arguing in favor of something she calls “sitpoint theory”—that is, the recognition that living in a wheelchair-using body gives one not a standpoint, but a “sitpoint,” which shapes one’s worldview and social interactions. In this view, the social locations in which the scholar or the subject of study are “natives” shape the kinds of insights they can offer about the social world, and those standpoints are tied to the bodies they inhabit. Other sociologists—particularly those who hail from the tradition of carnal sociology described by Wacquant (2015)—may not be “native” to some area of social life or bodily practice. But by immersing their bodies in a particular place and/or activity through intensive ethnography, they come to experience it as second-nature. Building off of Mills’s (2000) injunction that sociologists should “make the strange familiar”— and Weber’s view that sociologists should seek deep understanding (verstehen) of research subjects on their own terms—carnal sociologists use their bodies to learn from the techniques and the visceral feeling of participating in a particular social activity. This practice, they hope, will give them access to a set of experiences and understandings distinct from what they could learn about simply by asking participants to report back. Whereas Wacquant (2015) and others focus on ethnographic methods in particular— where the researcher can come “to know his [sic] object by body,” becoming a “vulnerable observer” and embodied participant in social processes (4–5), the present volume expands its reach to other methods within sociology. Empirical research on the body and embodiment in sociology most commonly uses qualitative techniques like ethnography, in-depth interviewing, and qualitative content analysis. The reasons for this tendency are likely multiple: on one hand, body and embodiment scholars often come to the field through their engagement with feminist sociology, a tradition that has historically viewed quantitative methods with some suspicion (seeing them as overly reductive or positivist). Qualitative methods, which prioritize understanding the construction of meaning and experience, are particularly useful when attending to the experience of

Toward a Sociology of the Body   7 having and living in a body. In this volume, however, we make no a priori judgments about the appropriateness of one methodological approach versus another when it comes to studying the body in society. Indeed, Samantha Kwan and Trenton Haltom (in this volume) show some of the analytical power that quantitative and mixed-methods approaches can bring to studies of the body, and recent sociologically informed queer methods volumes (Compton, Meadow, and Schilt 2018; Ghaziani and Brim 2019) have, more broadly, been working to radically reimagine the uses of quantitative methods for use in illuminating the lives and challenges of diverse social groups.

Multiply Situated Bodies The second unifying thread of this handbook is its attention to “multiply situated bodies,” our term recognizing that bodies inhabit and display numerous, intersecting group memberships at once. Textbooks and edited volumes—in sociology and other fields— frequently address “identity” or “diversity” concerns by dedicating one discrete unit or chapter to issues of race, gender, sexuality, and other such social categories. This approach, while highlighting work that deals with diverse bodies and lived experiences, runs the risk of letting the remainder of the book focus on unmarked, universalized bodies and experiences. We wish to be clear: there are no universal experiences, no bodies unmarked by culturally specific attributions of racial categorization, gender, and more. There are only people whose bodies and identities are treated as normal or unproblematic within a society, and those whose bodies and identities are viewed as a problem. With these considerations in mind, we asked all of our contributors to explicitly consider and name the socially significant attributes of the bodies they studied—chapters that deal with (for example) white, male bodies and experiences should be just as attentive to the potential influences of racial and gender norms as those that deal with the bodies and experiences of women of color. Other chapters address the contributing influences of age, sexuality, class, body size, and more.1 This approach to designing the volume is a product of our engagement with the feminist concept of intersectionality. Intersectionality, as defined by feminist legal scholar Kimberlé Crenshaw (1989), describes the ways identity groups and characteristics combine to shape different people’s experiences and, particularly, the types of opportunities and disadvantages they face in society as a result. Intersectionality is not additive—that is, there is not one constant cost of being Black that we would then add to the cost of being female, of being queer, fat, disabled, and so on. Rather, intersectionality suggests that (for example) Blackness fundamentally shapes Black women’s experiences with womanhood and femininity, just as their personal and social identification as women may cause their experiences of race and racism to differ from Black men’s. Inherent, if rarely made explicit, in the concept of intersectionality is the fact that intersectionality is embodied. We use the term “multiply situated bodies” to highlight this fact. Whereas “identity” can tend toward the abstract, we wish instead to emphasize

8   Katherine Mason and Natalie Boero the corporeal presence of bodies. People do not just adopt identities by choice; instead, the advantages and disadvantages they face, particularly within face-to-face interaction, are shaped by the bodies they present to the world and the way other social actors respond to them. Following from the insights of intersectional feminist scholarship, we argue that bodies are multiply situated within different social identity groups and hierarchies. One’s body is not either white or fat, disabled or female. Instead, bodies exhibit multiple types of characteristics all at once, thus causing them to be read by onlookers as members of a variety of social groups. At the same time, bodies are multiply situated within diverse physical and cultural spaces. While our bodies carry a variety of characteristics from one place to the next as we move through our daily lives—from home to work or school, via public or private modes of transit—those characteristics’ salience shifts based on our context. Our bodies matter differently in different physical spaces (for example, being a wheelchair user in a space that has well-maintained ramps and sidewalks versus one that does not; being larger-bodied in a classroom where desks are affixed to chairs versus one where chairs can be pulled up to tables so as to accommodate multiple body sizes and shapes). So, too, do our bodies matter differently within different social contexts: the skin tone and other “racial” body characteristics that mark a person as a visible minority in their workplace might become unremarkable in another setting—perhaps a neighborhood or a family gathering—where members of their racial group form the majority. Likewise, in the doctor’s office, a disabled or chronically ill body becomes a problem to be cured; in disability activist settings, that same body could function as a resource for expertise, legitimacy, and political clout. It would be a mistake, however, to assume that the multiply situated body is unchanging. As our bodies move through various physical and social settings, the shifting meanings that attach to us may compel our bodies to change, too: to go on a diet when we see a parent restricting their eating; to cut our hair or dress differently to fit in with a subcultural group we’ve begun to identify with; or to medicate a disorderly body to win our doctor’s (or teacher’s, or partner’s) approval. Such changes may be unconscious, as when we emulate the bearing and mannerisms of those we admire; they usually reflect a mixture of personal desires and societal expectations. In short, our multiply situated bodies influence the social meanings and reception given to our bodies, the “fit” between our bodies’ shape and ability and the physical spaces we inhabit, and, indeed, our physical well-being and appearance. Notably, for the sociologist interested in understanding multiply situated bodies, it is not only the body of the research subject that is situated. Rather, the researcher’s body is multiply situated, too. They inhabit multiple racial, gender, sexual, class, and dis/ability identities simultaneously. Their body—in particular, their legibility (or illegibility) as a member of particular groups—may become a resource or a liability when performing face-to-face research with participants (see, for example, the chapters by Barber; Gruys and Hutson; Low and Abdullah; and Randles); the body and appearance work that ­certain research sites demand may pose physical or economic barriers to some researchers;

Toward a Sociology of the Body   9 and, as Nordmarken points out, illness and disability can further impact researchers’ ability to conduct research and writing in line with disciplinary standards. Lastly, the norms of academic writing generally, and sociology specifically, enable researchers to make their body and its relationship to their work invisible if they so choose (what Donna Haraway calls “the God trick of seeing everything from nowhere” [1988, 581]). Like Haraway, we have urged authors in this volume to reject the “God trick” of disembodied knowledge claims in favor of “embodied objectivity . . . [which] means quite simply situated knowledges” (1988, 581). In moving on to the organization of the book, we recognize that asking all authors to attend to multiply situated bodies in their work—and explicitly rejecting an ­organizational model in which articles are divided by single categories like race, class, and gender—can make it difficult for readers to locate chapters that centrally theorize those or other specific identities. Thus, while the organization of the book itself reflects our desire to focus on “multiply situated bodies,” in the section summaries that follow, we also highlight those chapters and sections that have a sustained focus on particular aspects of race and ethnicity, sex and gender, and social class. Additionally, because bodies are always situated within specific national and cultural contexts—and because a great deal of the English-language scholarship on bodies is US- and UK-based—we highlight chapters dealing with bodies outside of those two countries.

Organization of the Book Part I: Bodies and Methodology in Sociology The second chapter in this handbook, Maxine Leeds Craig’s “Methodologies for Categories in Motion,” sets the stage for subsequent chapters by developing the ­concept of “categories in motion” as a way to move beyond identitarian or additive approaches to intersectional analysis within sociology. In line with this volume’s focus on methods and methodology, Craig uses examples from a wide range of sociological studies of bodies and embodiment to show how, by not assuming static ­contexts, identities, and bodies, these various methodologies reveal “categories in motion,” which then allow for a more dynamic and embodied usage of intersectionality within sociology. As noted earlier, a particular focus of this volume is on methodology: how do scholars utilizing a wide range of sociological methods design empirical projects to capture important data about the bodies and embodiment of their research subjects? The first section Chapters 3–5 of the handbook offer case studies and descriptions of research design across a range of methods: qualitative approaches like ethnography and in-depth interviewing, mixed-methods approaches (especially combining qualitative and

10   Katherine Mason and Natalie Boero quantitative elements), and content analysis. In addition to providing descriptions of their research design and implementation, these authors also discuss the pros and cons of each approach: what kinds of data about bodies might each particular method be particularly well-suited to provide? These and other methods will then be demonstrated across a range of empirical topics in the second section of the handbook. Face-to-face qualitative methods like ethnography and in-depth interviewing have long been favored by sociologists studying bodies and embodiment. In this section, the chapters by Jennifer Randles and by Kelvin E. Y. Low and Noorman Abdullah parse some of the potential benefits of these methods. Ethnography and in-depth interviewing frequently bring the researcher face to face with research subjects, granting the researcher access to the physical characteristics of their subjects and, in many cases, the physical settings—schools, gyms, workplaces, and so on—where subjects conduct their daily activities. The richly detailed data that can result from such methods are often critical for bringing the materiality and specific lived experiences of subjects’ bodies to life in writing. In “Sensory Experience as Method,” Low and Abdullah describe the uses of researchers’ sensing—and sensed—bodies in ethnographic research. In two of the cases they present, Low and Abdullah examine research participants’ reactions to the researcher’s own body. These cases—eliciting participants’ interpretations of the researchers’ accents, bodily gestures, racial phenotypes, and scents—allow Low and Abdullah to study the sensory, embodied aspects of social interaction: how do our often-subconscious perceptions of another person’s body lead us to label them as similar to or different from us, as well-socialized or deviant? The third case, describing Low’s participant observation alongside hikers on Singapore’s historical heritage trails, examines how subjects drew on sensory memories of the smells and tastes of their childhoods to assess the authenticity of foods offered along the trail. This chapter also focuses on bodies and embodiment in a non-US/UK context. In “Pregnant Embodiment and Field Research,” ethnographer Jennifer Randles, who was visibly pregnant during much of the time she spent observing state-sponsored “responsible fatherhood” classes for low-income men in the United States, notes that her body could easily have posed a challenge in the research encounter. As a young, white, highly educated woman, Randles was demographically different from her subjects, who tended to be low-income men, often of color. Yet Randles discovered that her pregnant body became a topic of interest when interviewing her participants: occasionally as a distraction or a painful reminder to some participants (such as those who had lost custody of a child), but more often as a means of building rapport. Specifically, Randles’s pregnant embodiment—and her admission that it was her first child—offered subjects a chance to connect with Randles as experts, offering her empathetic advice and stories from their own experiences as parents that revealed rich details about their parenting values and beliefs. Not all researchers’ bodies and topics will align in this fashion, but Randles urges qualitative researchers to consider what impact their embodied presence might have on research subjects and to think about how, if at all, that embodiment might serve as a resource for collecting high-quality data. In this chapter, Randles pays

Toward a Sociology of the Body   11 particular attention to the raced and classed elements of her interactions with her participants. While both Randles’s and Low and Abdullah’s chapters represent a more traditional qualitative approach to studying embodiment, in “YouTube Vlogs as Illness Narratives,” author Natalie Fullenkamp develops a method for performing body-focused content analysis online. Looking at YouTube video blogs (vlogs) created by chronic illness sufferers to document their bodies’ symptoms, Fullenkamp describes procedures for building a sampling frame for web content, sampling within that population, and coding and analyzing the dense audiovisual content that resulted. Bodies filmed and displayed online—or in other media—do not provide the full array of sensory data that a body encountered in face-to-face interaction would, but they do offer some unique opportunities to study vloggers’ self-presentation and narrativization of their illnesses in the absence of the presence of a researcher. Lastly, in “Mixed Methods in Body and Embodiment Research,” Samantha Kwan and Trenton M. Haltom review the uses of mixed-methods research for studying bodies and embodiment (where “mixed methods” refers specifically to a combination of quantitative and qualitative elements). Using examples both from Kwan’s research on body weight and from elsewhere in the literature, the chapter discusses various options for combining particular qualitative and quantitative methods (e.g., content analysis, indepth interviews, and statistical analysis of quantitative survey results), as well as different options for the order in which to conduct each piece of the study. While qualitative methods remain an important part of Kwan and Haltom’s approach to studying bodies in society, their chapter should serve as an invitation to quantitative sociologists who are interested in studying the body. Chapters with a significant focus on race/ethnicity or class/caste in this part include those by Randles and Craig. Gender-focused chapters include Randles and Craig. And the chapter by Low and Abdullah has with a non-US/UK focus.

Part 2: Marginalized Bodies Chapters 6–16 present research on the bodies most often studied by sociologists of the body: nonnormative bodies. These bodies make perceptible the social norms and expectations for how bodies should look and behave by violating those norms. The chapters on fat bodies, gender nonconforming bodies, and ill and aging bodies confront social norms that implicitly assume all bodies will be slender, binary/cisgender, young, and healthy. The chapters on modifiable bodies examine the widespread social expectation that people will manage their bodies to better meet the norms for people of their gender, class, or cultural background. In short, these chapters—and the sociological traditions they represent—offer insight into the often-unspoken social rules for embodiment that govern all members of a society, normative and nonnormative alike. Chapters with a central focus on race/ethnicity or class/caste in this part include those by Strings; Curington and Kang; Talukdar; Haddow; and Barber. Gender-focused

12   Katherine Mason and Natalie Boero chapters include those by Strings; Hurd Costello; Sledge; Barber; Curington and Kang; and Talukdar. And chapters with a non-US/UK focus include Costello; Curington and Kang; and Talukdar.

Fatness and Body Size In the last twenty years, fatness and body size have become an increasingly popular focus for studies of bodies and embodiment (e.g., the Fat Studies journal, founded in 2012). At the same time, the emergence of Fat Studies as an interdisciplinary field has further advanced the study of fatness and fat bodies (Braziel and LeBesco  2001; Rothblum and Solovay  2009). Sociological research, theory, and methodology have been central to the growth of both of these projects (Boero  2012; Farrell  2011; Saguy 2014). The chapters in this section both interrogate and elaborate the historical and contemporary construction of fat bodies and embodiment. In her chapter, “Representations of Fatness.” Abigail  C.  Saguy critically reviews the literature on “fat frames” while also offering a methodological reflection on her own mixed-method work within this literature. This literature maps the various framings of fatness historically, but more predominantly in the context of the American “obesity epidemic.” This work largely finds that while multiple framings of fatness exist, for various reasons, medical framings that posit obesity as a social problem and an individual and public health crisis have become and remain dominant. Studies of fatness and embodiment have been critiqued for not paying enough attention to race and ethnicity. In her chapter, “Fat as a Floating Signifier,” Sabrina Strings uses historical data to show how the growth of anti-fat prejudice and “fear of racialized others” came together such that in nineteenth-century America, fatness became a “floating signifier” and, as such, perceptions of fat bodies varied significantly by race. By showing the centrality of race to historical framings of fatness, Strings offers a critical intersectional lens through which to understand the contemporary framings of fatness outlined by Saguy. Natalie Ingraham’s chapter, “Health at Every Size (HAES™) as a Reform (Social) Movement within Public Health,” uses a situational analysis to elucidate the tensions within the HAES movement between more radical/political and reform-oriented efforts to change the ways in which public health views and creates policy around fatness and fat bodies.

Aging and Death In a rapidly changing biomedical and technological landscape, the promise of new interventions into the challenges associated with aging bodies has forced a re-examination of cultural norms around aging and death which rely on taken-for-granted concepts of binary gender and rigid boundaries between what is human, animal, or technological. In her chapter, “Aging, Gender, and the Body,” Laura Hurd offers methodological reflections on how cultural norms around masculinity, femininity, and sexuality intersect with ageism in ways that make interviewing older people about the embodied experience of aging fraught for both interviewee and interviewer. Hurd suggests that

Toward a Sociology of the Body   13 greater attention to the diversity of experience and social position of older adults combined with deeper researcher reflexivity may relieve some of these methodological challenges. This chapter will also be of particular interest for those interested in gender. In her ­chapter, “Animal, Mechanical, and Me,” Gill Haddow explores how both older and younger adults think about current and future options in the arena of organ transplantation and the anticipated consequences of these options in terms of both bodies and subjectivities. Together, these two chapters raise questions about methodology, bodies, and embodied subjectivity central to understanding the experiences of a rapidly aging population in an era of rapid technological and social change.

Bodily Sex beyond Binaries As with race, class, and gender, sexuality and sex are threaded throughout numerous chapters in this volume. Indeed, scholars of gender, sexuality, and sex have long been among those most explicitly theorizing and studying bodies and embodiment. Thus, explicitly sociological work in this area is an important part of this volume. In particular, the two chapters in this section explore how the historical and contemporary imposition of binary sex and gender shape how people navigate their own embodiment within this context. In “Beyond Binary Sex and Gender Ideology,” Cary Gabriel Costello offers a broad overview of many ways different societies have understood and organized sex and gender into nonbinary categories, with particular attention to the key role of the European colonial project in the imposition and naturalization of our own contemporary binary understandings of both. Costello then brings this broad history to bear in elucidating the contemporary bodily experiences of four intersex and/or trans people by exploring how these people navigate and negotiate binary sex/ gender ideologies in their own experiences and understandings of sex variance and gender transition. In critiquing Western sex/gender binaries and the European colonial project, Costello focuses intensively on both sex and gender in non-Western or European contexts. As with much of body and embodiment studies, work on sex, gender, and embodiment has also been heavily weighted toward the theoretical. Thus, Costello’s attention to experience meshes well with this volume’s focus on empirically driven, sociological body and embodiment scholarship. Central to understanding embodied experience is understanding how ideologies of binary sex and gender solidify into normative expectations of sexed and gendered bodies. In “Male Breast Cancer in the Public Imagination,” Piper Sledge uses narratives of trans and cisgender men with breast cancer to highlight the normative expectations of femininity and female embodiment that dominate both popular and medical constructions of breast cancer. Sledge’s data point to the presence and impact of rigid boundaries around gendered embodiment, which render only some bodies with breast cancer as intelligible and treatable within current biomedical models. Both Costello and Sledge’s chapters point to the importance of furthering an understanding of nonbinary bodies and embodiment rooted in an empirical understanding of nonbinary and trans people.

14   Katherine Mason and Natalie Boero

Modifiable Bodies Central to both the sociocultural construction of bodies and the experience of embodiment are the various ways in which people choose to, are encouraged to, or are expected to modify their bodies. Chapters in this section offer empirical investigations into the contexts in which various groups modify—or help others modify—their bodies. In “Good-Looking Men Require Hard-Working Women,” Kristen Barber covers both levels, using ethnographic observation and interviews with employees and clients at two high-end men’s salons to show how the embodied practices of women in these salons reinforce a gender binary and gendered power relations. Further, Barber points out how women employees’ embodied practices in these salons negate the potential of men’s consumption of beauty products and services to subvert hegemonic and binary conceptions of masculinity and femininity. Like Barber, in their chapter, “Contrasting Scientific Discourses of Skin Lightening in Domestic and Global Contexts,” Celeste Vaughn Curington and Miliann Kang look beyond the consumers of body modification products and services to instead study the social structures that underlie the creation and distribution of such products. Curington and Kang’s chapter examines the contrasts in how skin-lightening products are framed by scientists and marketed differently in the United States and abroad. In looking at how these products are framed, not by those using them but by those studying them, Curington and Kang offer new insight into the racialized and gendered constructions and modification of bodies. In “Feeding and Fasting Bodies,” Jaita Talukdar undertakes a Bourdeusian analysis of the dieting and fasting practices of forty-eight women in Kolkata, India. Talukdar highlights that body modification through reduced food consumption does not always represent a capitulation to neoliberal, feminized weight loss culture. Indeed, she suggests that the individualized dieting of women looking to benefit from India’s rapidly changing economy must be differentiated from the more collectively oriented religious fasting engaged in by less privileged women, contradicting a narrative that sees fasting as only the result of globalized Western ideals of beauty and bodies.

Part 3: Embodied Sociology Whereas the previous part’s chapters dealt with bodies as the object of analysis, this part treats bodies and embodiment as an analytic lens for sociological analysis. Specifically, Chapters 17–27 serve as models for sociologists in a wide range of subfields and specialties to consider the bodily as they explore how various social traditions, institutions, and structures work. Readers looking for research with a central focus on race/ethnicity or class/caste should attend to the chapters by Hohle; Joseph; and Kathiravelu; gender plays a key role in the chapters by Gruys and Hutson; Lande; Rajah and Osborn; and Reich. Chapters focusing on bodies in a non-US/UK context include those by Joseph and Kathiravelu.

Toward a Sociology of the Body   15

Bodies and States The sociological study of states, state violence, and citizenship presents another opportunity to move bodies and embodiment to the analytical center of a subfield in which they have been implied but have remained largely on the margins. The two chapters in this section consider the role of racialized bodies in shaping the experience and construction of nationality and citizenship. Furthermore, they attend to the importance of bodies in the formation of political knowledge as well as understanding state responses to social movements. In “Unruly Bodies,” Randolph Hohle brings bodies and embodiment to historical and political sociology by using the case of the Black Panther Party to explore the impact of bodies on political outcomes. Specifically, Hohle engages the concept of “figurative violence” to understand how movements themselves consciously deploy different embodiments to garner support from allies and instill fear in their foes—in the case of the Black Panther Party, the state. This fear then inspires an embodied and racialized response from states in order to legitimate state violence and criminalization and to shape political discourse and outcomes. Shifting from state violence and social movements to questions of migration and national identity, in “Race, Phenotype, and Nationality in Brazil and the United States,” Tiffany Joseph uses in-depth interviews to show how bodies are central to the construction of race and racialized identities in two transnational contexts. Together, these chapters point to the importance of bodies to the construction of and response to racialized citizens and states.

Bodies and Labor As the quotation from Engels at the beginning of this chapter suggests, bodies and embodiment have always been relevant to understanding work and labor under capitalism. The two chapters in this section sharpen a focus on the relationship between bodies and labor by understanding the conscious emotional and aesthetic labor of employees in retail clothing and retail fitness environments as well as the everyday embodied oppression faced by migrant workers in the hypermodern city states of the Global South. In their chapter, “The Aesthetic Labor of Ethnographers,” Kjerstin Gruys and David J. Hutson use autoethnographic methods to demonstrate not only that embodiment and aesthetic labor are topics for ethnographic research but also that embodied aesthetic labor is part and parcel of the research process itself. Using data from the authors’ work in different customer service environments, Gruys and Hutson argue for an expanded intersectional analysis of the aesthetic labor of ethnographers with an eye to both the power dynamics and ethical considerations endemic to the method. In her chapter, “Bodies That Don’t Matter, but Labor That Does,” Laavanya Kathiravelu uses ethnographic data to articulate and understand the contradiction between the intensely visible embodiment of Indian migrants in Singapore and Dubai as laborers and the lack of visibility of these same workers during the times they are not working. Kathiravelu explains this contradiction as the result of a number of “body tropes” in

16   Katherine Mason and Natalie Boero which these laborers come to be viewed as pieces of technology which require maintenance as pieces of capital. The consequences of these tropes is that employers and nonmigrant citizens view these migrant workers as disposable and less than human with no need for down time, social integration, or decent living conditions. Together, both of these chapters point to the centrality of bodies and embodiment in understanding the conditions of work in areas as disparate as retail, construction, and academic labor in a transnational capitalist system.

Bodies and Institutions Understanding the place of institutions in social life is a core analytical focus of sociology as a discipline. Thus, the study of institutions is a critical entry point when considering how an embodied sociology can provide a new analytic lens within extant sociological subfields. The chapters in this section employ the lens of embodied sociology to the institutions of science and medicine, specifically clinician practices within hospital Critical Care Units, and the development of new markets for bodily knowledge via direct-to-consumer genetic testing. In “Embodied Spatial Practices and the Power to Care,” Elise Paradis, Warren Mark Liew, and Myles Leslie use ethnographic methods to analyze the spatial practices of health care delivery. In particular, Paradis et al. are attentive to how embodied spatial practices reflect and reinforce relations of power and hierarchy in medical encounters with an eye to how this knowledge can contribute to greater equity in health care delivery. In “Contesting New Markets for Bodily Knowledge,” Rene Almeling moves beyond the embodied spatial relations of health care delivery to the professional and scientific contestations around the validity and dissemination of bodily knowledge via genetic testing. Using textual analysis methods, Almeling looks at how bodily knowledge continues to be claimed and guarded by experts even as it is both democratized and increasingly monetized by for-profit, direct-to-consumer genetic testing. As Almeling shows, these new markets for bodily knowledge have direct consequences for individuals’ access to their own genetic information, given the rapid expansion of both the availability and uses of new forms of genetic knowledge.

Bodies and Medicine The chapters in our section on Bodies and Medicine all in some way question of how patients and caregivers bring their own embodied knowledges and experiences into the encounter with health professionals and technologies. Jennifer A. Reich’s chapter, “Managing Risky Bodies,” draws on in-depth qualitative interviews to understand the personal and structural factors that lead parents—mostly mothers—to reject vaccination and other forms of medical intervention for their children. Reich’s insights derive from a larger study of thirty-four Colorado parents (discussed in her 2016 book, Calling the Shots), but this chapter focuses on representative case studies of two mothers: Lauren, a white Evangelical Christian homeschooling mother of four, and Katie, a white, politically progressive mother of two whose children are in private school. Reich’s analysis pulls together the macrosocial and the microso-

Toward a Sociology of the Body   17 cial, examining how widespread discourses of biomedical risk and mother blame create conditions where women come to feel personally responsible for managing their children’s health risks, including (but not limited to) refusing some or all vaccinations. By attending to these two women’s stories in close detail, Reich challenges readers to recognize these women’s motivations as considerably more complicated than simply being “anti-science” or anti-vaccine; instead, these women’s choices result from the interplay of structural privilege (that enables them to challenge medical orthodoxy), embodied experiences of medical mistreatment or overtreatment, and social/medical norms that demand that they be responsible consumers of health on behalf of their children. Anthony Ryan Hatch, Julia  T.  Gordon, and Sonya  R.  Sternlieb’s chapter on “The Artificial Pancreas in Cyborg Bodies” uses a “biohistory” approach to studying the development of the artificial pancreas. This device is an insulin delivery pump system for type 1 diabetics, worn on the outside of the body, which seeks to streamline and improve diabetes management by automating the processes of blood glucose monitoring and insulin injection (not requiring much active oversight by the patient/user, in contrast to earlier technologies). In particular, Hatch and colleagues contrast the flows of information and user agency enabled by the “closed-source” artificial pancreas marketed by biomedical technology companies to the information and agency associated with do-it-yourself “open-source” software that some technologically savvy type 1 diabetics have developed to run their own artificial pancreases. Sonny Nordmarken’s chapter, “Contesting Lyme Disease,” uses autoethnography to examine the author’s own embodied experiences of fighting to get a diagnosis of Lyme disease. Like research subjects in the other two chapters in this part, Nordmarken describes how medical control over his body, as well as medicine’s failure to resolve his health problems, led him to begin trusting his body’s own knowledge more and to use that embodied knowledge as a resource for seeking a better diagnosis and more responsive treatment. Nordmarken argues that living with chronic illness has also conferred him with an “epistemic advantage”—insights that attest to the realness of his bodily symptoms even as medical providers wedded to conventional diagnostic measures questioned whether he was “really” sick (and, thus, the ability to better comprehend the social construction of medical expertise and certainty). This chapter also outlines, at length, the place of autoethnographic research methods in social science research and demonstrates how to combine personal narrative with sociological analysis.

Bodies and Violence Making the implicit place of bodies in sociology explicit identifies another critical thread running through core sociological topics like violence and crime. The two chapters in this section both look at bodies and embodiment as critical elements of both the experience of violence and efforts to resist and prevent violence. In Brian Lande’s chapter, “Laying Hands,” he moves past a more conventional focus on rules, norms, and attitudes in police training and looks at the “sensorial and tactile education” in workplace socialization of police recruits at a police academy. With recent attention to police violence, Lande’s centering of the bodies of officers and the various

18   Katherine Mason and Natalie Boero ways they are taught to “lay hands” on suspects and others gives deeper insight into how recruits come to embody an identity as officers and the implications of that process for understanding policing more generally. In “The Place of the Body in Resistance to Intimate Partner Violence,” Valli Rajah and Meg Osborn use textual analysis to explore the role of body and embodiment in research on intimate partner violence (IPV). More specifically, Rajah and Osborn look at the extant IPV literature to query how this literature frames women’s embodied resistance to male violence and understand what this can tell us about embodiment and IPV. Rajah and Osborn conclude with a discussion of how this research can inform policy and result in more equitable outcomes for victims. Taken together, these chapters offer a new and novel articulation of the sociology of the body and embodiment centered on the empirical insights that result from using multiple sociological methods. In building on the theoretical insights of earlier body scholars, the data presented in these chapters also bring into high relief the importance of attending to multiply situated bodies in articulating both a sociology of the body and an embodied sociology. Yet this volume does not represent a comprehensive sociology of the body and embodiment; instead, it sets the stage for a sociological approach to bodies that prioritizes the empirical and methodological while always seeing the body as central to an intersectional understanding of, in Maxine Craig’s words, “categories in motion.”

Note 1. One very important aspect of bodily experience and identity—ability/disability—receives less coverage in this volume than we would have liked. Chapters by Fullenkamp, Hatch et al., Nordmarken, and Sledge deal, in different ways, with the embodiment of chronic and acute illness. But by unfortunate coincidence, other authors we had invited to contribute chapters on disability had to pull out late in the publication process.

References Baynton, Douglas. 2013. “Disability and the Justification of Inequality in American History.” In The Disability Studies Reader, edited by Lennard J. Davis, 17–34. New York: Routledge. Boero, Natalie. 2012. Killer Fat: Media, Medicine, and Morals in the American “Obesity Epidemic.” New Brunswick, NJ: Rutgers University Press. Bourdieu, Pierre. 1984. Distinction: A Social Critique of the Judgement of Taste. Cambridge, MA: Harvard University Press. Braziel, Jana Evans, and Kathleen LeBesco, eds. 2001. Bodies Out of Bounds: Fatness and Transgression. Berkeley: University of California Press. Chodorow, Nancy. 1978. The Reproduction of Mothering: Psychoanalysis and the Sociology of Gender. Berkeley: University of California Press. Collins, Patricia Hill. 1990. Black Feminist Thought: Knowledge, Consciousness, and the Politics of Empowerment. New York: HarperCollins.

Toward a Sociology of the Body   19 Collins, Randall. 1994. Four Sociological Traditions. New York: Oxford University Press. Compton, D’Lane, Tey Meadow, and Kristen Schilt, eds. 2018. Other, Please Specify: Queer Methods in Sociology. Berkeley: University of California Press. Crenshaw, Kimberlé. 1989. “Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory and Antiracist Politics.” University of Chicago Legal Forum 1989, no. 1: 139–167. Elias, Norbert. (1939) 1978. The Civilizing Process. New York: Urizen Books. Engels, Friedrich. (1845) 2010. Condition of the Working Class in England. Marxists.org. Farrell, Amy Erdman. 2011. Fat Shame: Stigma and the Fat Body in American Culture. New York: New York University Press. Fausto-Sterling, Anne. (1985) 2008. Myths of Gender: Biological Theories about Women and Men. New York: Basic Books. Fausto-Sterling, Anne. 1993. “The Five Sexes: Why Male and Female Are Not Enough.” The Sciences 33: 20–25. Fausto-Sterling, Anne. 2005. “The Bare Bones of Sex: Part 1—Sex and Gender.” Signs: Journal of Women in Culture and Society 30, no. 2: 1491–1527. Firestone, Shulamith. 1970. The Dialectic of Sex: The Case for Feminist Revolution. New York: William Morrow and Company. Garland-Thomson, Rosemarie. 2002. “Integrating Disability, Transforming Feminist Theory.” NWSA Journal 14, no. 3: 1–32. Ghaziani, Amin, and Matt Brim. 2019. Imagining Queer Methods. New York: New York University Press. Gilman, Sander  L. 1985. “Black Bodies, White Bodies: Toward an Iconography of Female Sexuality in Late Nineteenth-Century Art, Medicine, and Literature.” Critical Inquiry 12, no. 1: 204–242. Goffman, Erving. 1963. Stigma: Notes on the Management of Spoiled Identity. New York: Simon & Schuster. Haraway, Donna. 1988. “Situated Knowledges: The Science Question in Feminism and the Privilege of Partial Perspective.” Feminist Studies 14, no. 3: 575–599. Hochschild, Arlie. (1983) 2003.The Managed Heart: Commercialization of Human Feeling. Berkeley: University of California Press. Lorber, Judith. 1993. “Believing Is Seeing: Biology as Ideology.” Gender & Society 7, no. 4: 568–581. MacKendrick, Norah. 2018. Better Safe Than Sorry: How Consumers Navigate Exposure to Everyday Toxics. Berkeley: University of California Press. MacKinnon, Catharine A. 1982. “Feminism, Marxism, Method, and the State: An Agenda for Theory.” Signs: Journal of Women in Culture and Society 7, no. 3: 515–544. Mairs, Nancy. 1996. Waist-High in the World: A Life among the Nondisabled. Boston: Beacon Press. Mills, C. Wright. 2000. The Sociological Imagination. New York: Oxford University Press. Pitts-Taylor, Victoria. 2015. “A Feminist Carnal Sociology?: Embodiment in Sociology, Feminism, and Naturalized Philosophy.” Qualitative Sociology 38, no. 1: 19–25. Reich, Jennifer. 2016. Calling the Shots: Why Parents Reject Vaccines. New York: New York University Press. Rothblum, Esther, and Sondra Solovay, eds. 2009. The Fat Studies Reader. New York: New York University Press.

20   Katherine Mason and Natalie Boero Rubin, Gayle. 1975. “The Traffic in Women: Notes on the ‘Political Economy’ of Sex.” In Toward an Anthropology of Women, edited by Rayna Reiter, 157–210. New York: Monthly View Press. Saguy, Abigail. 2014. What’s Wrong with Fat? New York: Oxford University Press. Shilling, Chris. 1993. The Body and Social Theory. London: Sage. Shilling, Chris. 2005. “The Rise of the Body and the Development of Sociology.” Sociology 39, no. 4: 761–767. Shilling, Chris. 2013. “Afterword: Embodiment, Social Order, and the Classification of Humans as Waste.” Societies 3, no. 3: 261–265. Simmel, Georg. 1997. Simmel on Culture: Selected Writings. Edited by David Frisby and Mike Featherstone. Thousand Oaks, CA: Sage. Smith, Dorothy  E. 1988. The Everyday World as Problematic: A Feminist Sociology. Boston: Northeastern University Press. Taylor, Carol  M. 1981. “W.  E.  B.  DuBois’s Challenge to Scientific Racism.” Journal of Black Studies 11, no. 4: 449–460. Turner, Bryan S. 1997. “What Is the Sociology of the Body?” Body & Society 3, no. 1: 103–107. Turner, Bryan S., ed. 2012. Routledge Handbook of Body Studies. New York: Routledge. Wacquant, Loïc. 2015. “For a Sociology of Flesh and Blood.” Qualitative Sociology 38, no. 1: 1–11. West, Candace, and Don H. Zimmerman. 1987. “Doing Gender.” Gender & Society 1, no. 2: 125–151.

chapter 2

M ethodol ogies for Categ or ies i n Motion Maxine Leeds Craig

One of the ways in which mobile life may become immobilized on the sociological page is through writers’ use of the shorthand language provided by identity categories. In responses to surveys, in the boxes checked on the demographic questionnaires that accompany interviews, in fieldwork’s quick notations, sociologists render social locations that are mobile and intertwined in lives as a race, a gender, and a class. Sociological methods and the conventions used in sociological writing risk freezing the flow of lives into timeless, static, and isolated objects. Such an outcome is not inevitable. This chapter identifies methodologies and writing strategies that, in various ways, attempt to treat identity categories as intersectional and always in motion. The examples of research in this chapter are all drawn from studies in which bodies and embodiment have an important place. They are, for example, studies of the ways in which economic shifts are registered in bodies, and of how social transformations bring new forms of embodiment into being. The foundational insight of the concept of intersectionality was that neither gender nor race operates in isolation. Therefore, intersectional methodologies are important tools for sociologists who study the ways in which social inequalities are embodied. Intersectionality has had and continues to have great influence in sociology. Its impact has been in the discipline’s recognition of the inadequacy of analyses that singularly focus on race, class, or gender. Single-axis analyses that were common in sociology before the late 1980s appear inadequate now. Still, the concept of intersectionality has been the subject of critique. Critics have commonly built their arguments as critiques of examples of intersectional scholarship that reveal intersectionality’s pitfalls. In this chapter I attempt to do the opposite: to look for examples of scholarship that employ methodologies that come closer to realizing intersectionality’s promise. My approach follows Sumi Cho’s, Kimberlé Crenshaw’s, and Leslie McCall’s suggestion that those who evaluate the concept should focus on “what intersectionality does rather than what intersectionality is” (2013, 795). The examples presented here employ strategies of data

22   Maxine Leeds Craig collection, analysis, and writing to reveal social processes, make the co-constitution of multiple structures visible, and complicate identity categories. The studies are drawn from research on bodies and embodification and were selected for what they could show about conducting intersectional research. They are attempts to think with categories of social location without reducing “the messiness of identity” (Puar 2007, 212). Bodies are very good places to view the disorderliness of identity. The experience of embodiment is change. People grow, age, transition among genders, become disabled, are recognized and misrecognized, and begin to think of themselves in new ways, develop new desires and abandon earlier ones, and reshape themselves. As individuals physically change and as the meanings socially attached to their bodies shift across time and space, their lived experiences defy the neatness of categories. Sociology of the body has both activist and academic roots. When feminists critiqued the medicalization of pregnancy, the harm produced by the beauty industry, and the pervasive cultural disregard for women’s sexual pleasure, they brought attention to the body as a site in which gendered inequality is both experienced and resisted. Michel Foucault (1978,  1979), Iris Marion Young (1980), Pierre Bourdieu (1984), and Susan Bordo (1993), and others provided frameworks for theorizing the ways in which socially constructed categories and the inequalities that undergird them are made to appear natural when they are embodied. Equipped with theoretical frames for analyzing bodies as social phenomena, sociologists turned their attention to bodies to study processes that relentlessly, yet inconsistently mapped race, gender, class, and other social positions to anatomies, appearance, dress, emotions, and physical movement. Much of the foundational theoretical work that addressed bodies and embodiment focused on a single dimension of structure, such as gender or class. However, increasing numbers of sociologists brought the concept of intersectionality to studies of bodies and embodiment, and employed a variety of methods to examine patterns of inequality that could not adequately be explained in terms of one dimension of social structure.

Three Critiques Before considering methodologies employed in intersectional scholarship on bodies and  embodiment, I will briefly outline debates that have surrounded the concept. Intersectionality entered the lexicon of feminist theory in 1989 when legal scholar Kimberlé Crenshaw used the term to critique the one-dimensional structure of anti-discrimination laws and the singular focus of much feminist and anti-racist activism, which, like ­anti-discrimination laws, too often addressed either gender or race but not both. Crenshaw argued that the consequences of race and gender could not be separated in black women’s lives. Black women are located at the intersection of race and gender, a location, Crenshaw argued, “that resists telling” (Crenshaw 1991, 1242) via a single-axis account. The concept of intersectionality, coined in a critique of inadequate legal remedies and insufficient social movements, has become fundamental to the practice of feminist sociology, enriching over two decades of research. It has also been the subject of critiques.

Methodologies for Categories in Motion   23 A cluster of critiques have focused on the ways in which the concept has traveled across and beyond academic disciplines, where, critics have argued, intersectionality ceased to be an instrument for progressive social change. These critiques address intersectionality’s wide circulation. In the same way that feminism as an activist framework is undermined when images of women’s empowerment are used to market products, frequent use of the term intersectionality in journalism and political campaigns has led some to disdain it as a meaningless political buzzword. Jasbir Puar has written of the ease with which the concept has been taken up “as a tool of diversity management and a mantra of liberal multiculturalism,” a process through which “intersectionality colludes with the disciplinary apparatus of the state-census, demography, racial profiling, surveillance—in that ‘difference’ is encased within a structural container that simply wishes the messiness of identity into a formulaic grid” (2007, 212). In the introduction to a special issue of Du Bois Review devoted to the travels of intersectionality, Crenshaw and her coeditors cautioned against “anthropomorphiz[ing] the concept as its own agent.” Intersectionality does not collude. It is a concept, not an actor. If we put aside the issue of intersectionality’s agency, Puar’s critique nonetheless speaks to the capacity of states, corporations, and indeed, anyone to appropriate, misconstrue, and reverse the intent of elements of radical theory. The concept of intersectionality, if not the term itself, originated among black feminist activists, some of whom introduced it into academic discourse. Intersectionality became an established concept within several disciplines and then disseminated widely beyond academia. The term’s meaning inevitably drifted as it circulated. The very abstraction of the term intersectionality, whose earliest appearance was in mathematical set theory (Oxford English Dictionary 2007), facilitates its movement, expansion, and perhaps misuse. Nothing in the word intersectionality inherently binds it to race or gender. It signals only a phenomenon of connection or coincidence. The concept’s broad dispersal and adoption may be considered a measure of its inherent utility. As intersectionality travelled from Critical Race Studies in Law to Sociology and other fields, the race/gender intersection that was fundamental to its conception was routinely expanded to consider class along with either or both race and gender. Increasingly scholars expand it further, using the concept of intersectionality to study the co-construction and interactions of some combination of race, gender, class, sexuality, nation, citizenship, or ability, and to study processes of social inequality by examining privileged social locations (Carbado 2013, 814). Intersectionality has been carried beyond its origins in the work of black feminists in the United States via studies that examine the transnational circulation of categories of identity and configurations of intersecting inequalities beyond the United States (Candelario 2007; Casanova 2004; Mohanty 2013). Some have criticized the travels of intersectionality away from its origins in US black women’s experience, activism, and theory. Brittney Cooper’s response to this critique has been: “Do we really want to argue that theories about black women should only travel limited amounts?” (2015, 14). bell hooks has argued that the margin is a powerful vantage point from which to understand the structure of a society (2000, xvi). Often finding themselves pushed to the margins of social movements and academic disciplines, black feminists were well positioned to see the need for the concept of intersectionality.

24   Maxine Leeds Craig A second set of critiques concerned the relationship of intersectionality to identities. Concepts are devices that point. They say “look here!” and by pointing, give us the questions we need to ask about the world. The concept of intersectionality is an imperative to consider more than one dimension of social structure. Intersectionality points in an open-ended way that demands that we consider what we have overlooked. Or more accurately, social movements have alerted researchers to what was previously ignored and led theorists to expand their conceptions of intersectionality. Every good idea that ever landed in social theory began in a social movement. The concepts that travel to sociology from social movements carry their baggage with them. The troubles (and strengths) of identity politics have accompanied the concept of intersectionality as it has been taken up by sociology and other disciplines. The troubles have to do with the tendency of identity politics to neglect intragroup difference, a trouble that gave birth to the concept of intersectionality in the first place. Critics have characterized intersectionality as an inherently flawed concept because of its reliance on identity categories. Viewing intersectionality as fundamentally an “identitarian project,” Jennifer C. Nash cautioned that the concept of intersectionality was at risk of being “reduced to a relic” because of the frequent challenges made to identity politics (2011, 5). Within sociology there are no signs that intersectionality is at risk of becoming a superseded concept. Years after Nash expressed her concern, the Race, Gender, Class section, intersectionality’s primary institutional home within the American Sociological Association (ASA), is among the largest of the ASA’s fifty plus sections. Contemporary sociologists routinely consider two intersections, for example race and gender, or three intersections, for example race, gender, and class, or race, sexuality, and gender. A smaller number of sociologists incorporate a sustained analysis of four or more dimensions of structure and identity into research. Nash has argued that “intersectionality is inextricably linked to the production and maintenance of identity categories. Its primary intervention . . . is to add complexity to existing identity categories, not to jettison identity categories altogether” (Nash 2011, 5). Others have countered that, on the contrary, intersectionality is primarily concerned with structures (Cho, Crenshaw, and McCall,  2013, 797). Debates about whether intersectionality is primarily about identities or about structure make little sense if we consider the durable relationship between structures and identity. Identities arise from structures, have meaning in relation to structures, and are themselves components of structures. Intersectionality is inextricably linked to identity categories, and identity categories are inextricably linked to social structures. A third set of critiques contends that much intersectional research gathers different dimensions of inequality into the same study but does not bring them together into a unified analysis. The adoption of the concept of intersectionality in sociological work has led to the standard use of the triad of race, class, and gender in sociological writing. Characters in sociological narratives, including those employing intersectional analyses, continue, in most sociological writing to be identified through the blunt instruments provided by the routine categories of social location. The actors in sociological accounts regularly enter pages introduced by categorical adjectives separated by c­ ommas

Methodologies for Categories in Motion   25 and followed by a noun. Throughout the sociological literature this takes the form of a list of race and class followed by a gender. The words we use in these introductory strings may appear to be the foundations of our analyses. However, in at least some sociological scholarship, rather than a foundation, they are a necessary reference to conventions of representation that are an important part of explaining social worlds. The mere presence of identity categories in research should not be the basis for characterizing and dismissing it as an identitarian project. Instead, one should ask how the categories are used. Critics have argued that in its applications sociologists reify and separate the categories of race, gender, and class, treating each dimension of structure as analytically separate (Puar 2007, 212). Feminist efforts to encourage intersectional approaches that do not devolve into layers of single-axis analysis have inspired the development of new metaphors. When Crenshaw introduced intersection as a metaphor, she asked readers to envision an accident victim harmed in the collision of automobiles at the intersection of two roads. The grid of intersecting streets has seemed too rigid a metaphor for many who nevertheless find intersectionality to be an essential approach for studying social inequalities. Patricia Hill Collins’s Black Feminist Thought, which was published within a year of Crenshaw’s (1989) “Demarginalizing the Intersection of Race and Sex,” used “interlocking” as the word to describe the ways in which race, class, and gender joined as systems of oppression to form a “matrix of domination” (Collins  1990, 225). Collins offered the image of interlocking forces to move beyond additive models of oppression. Interlock suggests a more enduring engagement than the mere meeting that occurs at an intersection. The term matrix has a variety of meanings in physical, mathematical, and computer sciences, all of which suggest a substance whose structure is more complex than the meeting of right angles. Ivy Ken departed from grids and matrices entirely when she proposed that processes of race, class, and gender be thought through culinary metaphors. Like sugar, butter, eggs, and flour, which do not simply “interlock” or “intersect,” combinations of race, class, and gender intermingle like flavors in our mouths. We taste them. We experience them. Race, class, and gender’s meanings transform when they come in contact with those who taste them, who enact them, who need them, who rely on them, who hate them, who are oppressed by them, who get advantages from them, who do not realize they are there, who do them, who use them. (Ken 2008, 164)

In Ken’s culinary metaphor, race, class, and gender are like mutually transformative ingredients in dough, deliberately produced by chefs who have updated old recipes to bake cookies that may taste differently to individuals raised in dissimilar food cultures. While not entirely escaping the view of race, gender, and class as analytically separated components (i.e., butter, sugar, and flour), Ken’s metaphor emphasizes processes through which the elements are produced and become inextricably fused. New metaphors are attempts to realize the vision of intersectionality through images that resist lapses into single-axis analyses or additive or reductive approaches. These metaphors

26   Maxine Leeds Craig ask us to look beyond patterns to processes, and beyond static categories to social locations that are perpetually in formation. Sociologists conducting research on the body have used ethnography, autoethnography, interviews, archival research, interpretation of texts, survey research, and combinations of methods with the aim of writing multi-axis analyses that do not reify categories. Beginning with ethnographies, the remainder of the chapter will discuss methods of research and strategies for writing that attend to the complications of intersecting social structures and their corresponding identity categories. It considers studies that apply intersectionality as an analytical framework and employ methodological strategies to increase the chance of keeping in view the inexact fit and mobility of identity categories in individual lives and across time and place. Keeping categories in motion within sociology of the body entails accounting for individual bodily change, contextual and historical change in the available identity categories, and change in the meanings that are socially attached to forms of embodiment.

Identities in the Context of Structures Ethnographies are generally anchored in locations such as workplaces or schools, where individuals spend significant portions of their time and which substantially impact individuals’ self-concepts and their social trajectories. Julie Bettie situated her research in a public high school (2014). In a study that is theoretically nuanced and empirically rich, intersecting categories of race, class, gender, and sexuality are shown to be simultaneously material, embodied, performative, and discursive. In Bettie’s Women without Class, categories are always in formation. In the introduction to the second edition, Bettie wrote that she wanted sociologists to imagine “noncategorical” intersectionality (2014, xxvii). This does not mean that Bettie abstained from using conventional categories of race, class, and gender as she wrote the book. Rather than obliterating categories, she worked to expand the way readers would conceive of them. Bettie described categories as “politically, historically, and situationally” created, rather than “essentially there” (2014, 35). Class, even if it was rarely named as such by students or teachers, and more visibly, race and ethnicity, structured the peer hierarchy of the school. Embodiment was central to the ways in which students engaged racialized and gendered class structures at school. Bettie asked, “What are the cultural gestures involved in the performance of class . . . and how is [class] imbued with racial/ethnic, sexual and gender meaning?” (2014, 55). The cultural gestures Bettie described were embodied acts. For example, the young women Bettie studied positioned themselves in terms of race, ethnicity, and class by wearing shades of lipstick that signaled to their peers their intersecting gendered race, ethnic, and class affiliation. Teachers’ misinterpretations of the meanings of students’ use of style led them to reproduce inequality by steering Chicanas away from college. Women

Methodologies for Categories in Motion   27 without Class used the potentially static language of race, class, gender, and sexuality to show how fluid racialized, class-located, gendered, and sexual meanings and practices contributed to enduring inequalities. Bettie explained that she used the hyphenated phrase “race-class performances of femininity” to show how race was read through class, and class through race, but “could just as well [have written] ‘gender-class performances of race’ or ‘race-gender performances of class’ ” (2014, 56). Performance is central to these phrases and signals the importance of embodiment to social structures. By keeping her analytical focus on performance, Bettie enabled readers to see race, class, and gender as co-constituting categories that are perpetually remade through embodiment, from moment to moment in schools by students and teachers acting within larger structures of social inequality. If class was the point of departure for an intersectional analysis in Bettie’s Women without Class, gender had a similar place in Eileen Otis’s Markets and Bodies (2012). Otis studied young women workers employed by luxury hotels in China’s emerging service economy and demonstrated that the relationships among markets and bodies are multiple and multidirectional. The study revealed gender as an embodied category in motion shaped by local and transnational discourses of gender, sexuality, race, class, corporate strategies for profit, economic need, and state policies regarding labor and migration. In a comparative study of two luxury hotels, one oriented toward international customers and the other toward domestic elites, Otis showed how and why women hotel workers acquired new ways of embodying femininity. The meanings of the femininities that were promoted in their workplaces were not natural or enduringly cultural but rather contingent upon the broader political economy, demands of employers, and were co-constructed with, among other things, class, urban or rural residency, and race and ethnicity in relation to foreign elites. Like Bettie, Otis approached gender and its relationship to class as puzzles to be solved and categories in motion, rather than as pre-existing categories. The divide between intersectionality as a theory of identity and intersectionality as a theory of structures rests upon a false separation between identities and the structures that produce, reproduce, and transform them. Both Bettie and Otis used ethnographic observation to reveal processes through which subjectivities and habits of deportment were formed in institutional contexts. These studies are examples of what Bonnie Thornton Dill and Marla Kohlman have characterized as “strong intersectionality.” “ ‘Strong intersectionality,’ ” they wrote “may be found in theoretical and methodological rubrics that seek to analyze institutions and identities in relation to one another. . . . On the other hand, ‘weak intersectionality’ explores differences without any true analysis” (2014, 24). Both Women without Class and Markets and Bodies present identities in relation to institutions. The broad contexts of intersecting class, race, and gender inequality and specific organizational contexts (i.e., a public school and luxury hotels) are joined in these studies. Intersectional scholarship has been faulted for reifying the categories of race, gender, and sexuality. In these critiques, identities are conceived as distinct from social structures. Approaches that consider identities in close relation to institutions reveal the ways in which identities and related embodied practices are structured by social institutions and are therefore contingent and mobile.

28   Maxine Leeds Craig Ethnography is not the only way to uncover the relationships among social categories, bodies, and institutions. Analysis of the literature of a profession provides another entry point. Sabrina Strings traced a pseudoscientific ideology of “black female sensualism” (2015, 108) in medical literature from the nineteenth century to the present day. Rather than focusing on embodiment, Strings examined the meanings that get attached to bodies. Strings demonstrated a pattern across time, in which black women were identified as public health menaces in medical literature. The pattern persisted despite shifts in the focus of public health concerns. In the early twentieth century, medical authorities characterized black women as carriers of syphilis. Later in the century black women were described as carriers of tuberculosis. Current public health literature characterizes black women as willfully and dangerously obese, and as having unconstrained appetites that drain public resources. Pointing to the lack of evidence for the earlier associations of black women with disease and the conflicting evidence that underlies the current moral panic regarding obesity, Strings argues that a discourse of black female sensualism shifts the blame for health disparities from structural inequalities to individual black women. Strings’s research illuminates the ways in which public health discourse repeatedly reinvented a pathologized identity category at the intersections race, gender, and class.

Intersecting Identities as Relational The studies described earlier highlight the value of seeing identities in relation to structuring institutions. Perhaps what is most important about their methods is contained in the three words “in relation to.” In a historical study of paid domestic labor published within a few years of the emergence of the concept of intersectionality, Evelyn Nakano Glenn conceptualized race and gender as relational constructs that take shape and produce gendered, racialized, and class subjectivities and naturalized hierarchies within broader political and economic contexts. Her focus on naturalization—that is, how certain racialized and gendered categories of person were seen to be naturally suited for low-wage work—places bodies at the center of her analysis. Like Strings, Glenn called attention to the ways in which meanings become attached to bodies. Glenn explained, “by ‘relational’ I mean that . . . categories (e.g., male/female, Anglo/Latino) . . . gain meaning, in relation to each other . . . .Thus, to represent race and gender as relationally constructed is to assert that the experiences of white women and women of color are not just different but connected in systematic ways” (1992, 34). Glenn analyzed archival sources and census data to chart the “the racial division of reproductive labor” (1992, 3). She framed the study as an advance beyond existing studies of reproductive labor that theorized gender but ignored race, and studies of race in the labor market that “either take for granted or ignore women’s unpaid household labor and fail to consider whether this work might also be racially divided” (1992, 3). Glenn found that as patterns of migration changed, different groups of racialized women were

Methodologies for Categories in Motion   29 positioned in dominant discourse as “naturally” suited to perform paid domestic labor or lower paid nursing work. In the absence of sufficient numbers of racialized women, the logic of subordination could also be applied to racialized men. In nineteenth- and early twentieth-century Hawaii and California, Chinese and Japanese men were relegated to the position of the group most suited to perform paid domestic labor. The “racial division of reproductive labor” produced an unstable gendered and racialized class hierarchy. Different groups were moved into the bottom of that hierarchy as patterns of migration and employment shifted. White identity, a category whose boundaries were not stable, was defined by its location at the top and its distance from the dirty work performed by the racialized workers at the bottom. Emphasizing the relational nature of social identities, Glenn used the metaphor of interlocking systems, in which the movement of one piece of a system has consequences for any other piece.

Filling in the Blanks and Opening the Categories When Strings analyzed pathologizing representations of black women and Glenn traced the racialized division of gendered labor, they made connections across categories that had been separated in historical records. Strings identified a recurring racialized gender pattern across time. Glenn placed previously separated labor histories of white women, women of color, and men of color into the same frame. Regardless of method, sociologists are ultimately studying and writing about human lives. In our efforts to make sense of those lives, our conventions can move us far away from those people, erase their bodies, and reduce the complexity of their lives. Doing intersectional sociology is about resisting tendencies to separate race, class, gender, and other categories of difference. Those tendencies are pervasive, institutionalized, and grow out of long social movement and disciplinary histories. Separating the categories of race, class, and gender is a methodological convention and, as a result, in the course of conducting research, sociologists often move into and out of intersectional methods. Sociologists frequently collect data on identities via separate questions and then bring those artificially separated pieces together again in their analyses. It is becoming more common for sociologists using qualitative methods to ask demographic questions in open-ended ways in order to avoid channeling respondents’ answers into limited identity categories. This is a strategy that permits researchers to stay closer to the complexity of embodied experience. In an interview-based study of middle-class men’s dress, Erynn Masi de Casanova asked men, “In terms of race or ethnicity, how do you identify yourself?” They responded with over a dozen combinations of color, nations, ethnicities, and religions (2015, 215). Casanova asked men about their sexualities in a similarly open-ended way. Men were included in the study as middle

30   Maxine Leeds Craig class on the basis of their occupations. Though various professional positions placed these men in the middle class, Casanova’s interview questions about their fathers’ dress provided information about her interviewees’ class trajectories. Casanova incorporated what she learned about class trajectories into her analysis. Inviting respondents to choose the words to situate themselves in racial, gender, and sexual categories has become an increasingly common approach within qualitative sociology. The strategy opens up research to recording the broad array of ways in which people name their racial, ethnic, and sexual identities. As a research strategy, the openended demographic question has the limitations of interviews generally. Responses researchers receive may express good-natured compliance with perceived expectations or, alternatively, respondents’ engagements with the politics of social classification through their circumvention of categories into which they feel they are placed by others. Rather than avoiding these issues, Casanova directly addressed the tension between self-representations, racial and ethnic heritage, appearance, and US conventions of racial classification in her research. She used self-reported language in her descriptions and noted when men who would likely be identified by strangers as white ­classified themselves in ethnic terms. In this way she reminded readers of the relevance of appearance and how self-identification exists in the context of how a person is perceived by others. Conventional questions, even in open-ended forms, tend to ask respondents to consider their identities along a single axis of structure such as race or gender. It is worth considering what is lost and how what we know is altered when we collect selfidentifications along a single component of identity. One of Casanova’s respondents gave an intersectional answer to a single-axis question. Asked about his race, he responded that he was a “white dude” (2015, 92). His response suggests that sociological research might be enriched if we asked questions that encouraged rather than limited intersectional expressions. Open-ended questions could be constructed to expand the number of “blanks” a person may fill in when she responds. Open-ended questions shift the power dynamic that exists between researchers and their informants. Barbara Sutton devised a method that went beyond open-ended questions by enabling the women she interviewed to set an interview’s agenda. Sutton was studying the ways in which women in Buenos Aires experienced economic crisis and interpersonal and social violence through their bodies. Sutton presented individual women with a pile of tens of “concept cards,” most of which were printed with a word or two. Some words specifically referenced bodies (i.e., appearance, menopause, skin color). Others (i.e., economic crisis, law) were less immediately connected to bodies. “Class” and “race” were among the cards, and blank cards were included so that women could add a word to shift the conversation according to their interests. Sutton invited women to select cards that had personal relevance. Initially, Sutton imagined that women would discuss their lives by moving in a linear fashion from card to card. Within her interviews, however, several of the women “exhibit[ed] a preference for piling, intertwining, lumping, linking, mixing, and cross-referencing bodily concepts and experience” (2011, 185). They needed clusters of interconnected concepts to tell how they lived

Methodologies for Categories in Motion   31 through Argentina’s crisis. Concept cards provided a mechanism for women to define the priorities of the interview, to order concepts in ways that made sense to them, and to show the relationships among them. Both open-ended questions and concept cards are ways of interviewing that provide more space for interviewees to express their lives in their own terms and to shape the narratives they tell about themselves. Identities are produced socially and relationally as individuals place themselves and are placed amid culturally meaningful categories. The interview setting may encourage subjects to present coherent stories about themselves that rely on stable identities. It is not uncommon, however, for interviewees to shift their self-characterizations during the course of an in-depth interview as they recall themselves in different contexts. Interviews record nothing more, nor less, than the account a person constructs when given the opportunity to speak about oneself. These accounts, often repeat formulations told before in other settings. Telling stories about the self occurs in many settings beyond interviews. Interviews record a presentation of self, “reflecting many of the cultural conventions from the society in which they are embedded” (Sutton 2011, 183). Women have developed these accounts because they are the terms through which they have made sense of their lives. The women in Sutton’s study used the cards to express the connections they saw among seemingly distinct terms. For example, a woman linked a sense of citizenship to a class position and linked both to racial phenotype. In these cases women used the cards to express the ways in which race, gender, and class were interconnected in their lives and to place their identities in broader contexts. The methods discussed to this point involve researchers studying others, either through observations, or subjects’ responses to questions or through examination of archival sources that contain traces of lives or of the way groups have been represented. Autoethnography reverses the gaze. The author is her own subject, yet as a form of sociology, autoethnographies situate the author within social contexts. Autoethnography has the potential to be what Dill and Kohlman characterized as “strong intersectionality” by presenting identities as they are produced in interaction in social contexts. Salvador Vidal-Ortiz (2004) recorded reactions to his light skin color and to his accent to explore the racialization of Puerto Ricans. Vidal-Ortiz traced the shifting perceptions of his race as reflected in others’ responses to him as he moved into different contexts. His research is primarily focused on racial schema, yet there are glimpses of how his sexuality and class contributed, in different interactions and settings, to his racialization. Autoethnographic methods can be incorporated into ethnography. Processes of “­recognition and misrecognition” (2016, 38) amid relationships characterized by sexual, racialized, gendered, and class difference and similarities are vividly conveyed in Jessica Fields’s account of her participatory action research study of intimacy, HIV/AIDS, and violence. Fields’s account richly conveys the ways in which interactions are framed by appearance and experienced through physically felt and expressed emotion. Reviewing her field notes and interview transcriptions, Fields found that the transcriptions, which recorded her nervous laughter and attempts to step back from fraught conversations,

32   Maxine Leeds Craig revealed the intensity of intersectional subjectivities. Fields’s methodology is characterized by the “insistently alive personhood” of everyone involved in the research (2016, 45). For Fields, staying attuned to alive personhood meant refusing to ignore the ways in which an “embodied history of U.S. racism” was active in her research (2016, 45). As a commitment to learning from feelings of awkwardness, failed questions, and misunderstandings that occur during the research process, attentiveness to alive personhood keeps categories in motion. Sociologists may be most successful when they learn from the instances when respondents refuse the categories presented to them, when they remain attuned to when and how categories change within the course of an interview, and when they do not ignore the discomforts and disappointments of ethnographic fieldwork. Noncompliant interviewees can save research from the exclusions of researchers’ methods.

Mixing Methods A researcher using any method will encounter its limitations. Ethnography provides rich accounts of the present but cannot recall the past. Archival methods capture only the parts of pasts that were, for some reason, recorded. Interviews can be structured to focus precisely on the interest of a researcher but suffer from an absence of institutional context beyond the artificial one created by the research itself. Researchers use mixed methods to reach beyond such limits. Susan Kaiser and Denise Green combined survey research, interviews, critical media studies, and participant observation to examine how race, class, gender, sexuality, and urban or rural residence shaped men’s relationships to fashion and dress. They used the insights gleaned from an initial set of interviews to inform their design of subsequent methods. Kaiser and Green found that each methodological component of the study raised unanswered questions. “When we reach the limitation of one method,” they explained, “another method dovetails and therefore enables researchers to continue a line of inquiry” (2016, 174). All of their methods, however, were focused on the present, and so, at the conclusion of the project, they reflected on the limits of present-oriented methodologies. They still had questions “about age and generational subject positions (when individuals are not only in their minds and bodies, but also in their locations in time and fashion history). Ultimately methods that embrace intersectionalities across time are needed: longitudinal studies of cultural discourse, preferably combined with individuals’ orientations toward style-fashion-dress” (2016, 176). The challenge of tracing intersectionalities across time requires mixing presentand past-oriented methodologies. In a study of masculine embodiment, I used the approach of mixing archival research and interviews to study changing intersectionalities across time. Sorry I Don’t Dance (2014) asked how and when it became ordinary for white, middle-class, heterosexual men to claim that they cannot dance. I was interested in the meaning of dance for contemporary men and how dancing, or avoiding dance, was connected to intersecting

Methodologies for Categories in Motion   33 racialized, gendered, sexual, and class-located forms of embodiment. Through interviews I learned that a man’s intersecting identity affected the social cost of being a nondancer. For example for many white, middle-class men, being a nondancer was normative. They could avoid situations where they would be called upon to dance, especially as adults. By interviewing men about their lifelong histories with dance, I learned how some men became dancers and others settled into dance avoidance. Through interviews I was able to learn about the many factors, all of which involve race, gender, class, and sexuality, which contributed to making men dancers or sitters-out. These factors included the lessons men absorbed about embodiment by watching their fathers and other male relatives, the presence or absence of dancing at home, patterns for adolescent and young adult amusement, and the kind of music men listened to, and whether it was considered dance music. These diverse experiences produced embodiments and a set of meanings about dance and dancers. Interviews could tell me about recent practices and meanings, but they could not let me know how these practices and meanings had changed over time. To learn how and when it became ordinary for white, middle-class, heterosexual men to avoid dance, I turned to archival and literary sources. I sought sources that would provide glimpses of men who danced, men who refused, and the ways in which such men were viewed. I wanted to know if, in the first half of the twentieth century in the United States, the assumptions about who ought to dance, who was likely to dance, and which groups were likely to be natural dancers were the same as they are today. To uncover the history of men enjoying or avoiding dance and of being praised for dance or being ridiculed or vilified for it, I turned to high school yearbooks, criminal cases about raids on gay bars, newspaper reports of nightlife, trade literature written for social dance instructors, periodicals published for soldiers, and military documents on soldiers’ recreation. I also read best-selling fiction that was popular with boys and men. Fiction could not tell me about men’s experiences on the dance floor, but it did provide insight into the meanings that circulated regarding men who danced. I discovered that throughout the twentieth century dancing or avoiding dance has been a way in which men performed intersecting race, gender, class, and sexual identities. From the beginning of the twentieth century to the present day, dance has had the capacity to position a man in intersecting structures of race, gender, sexuality, class, and nation. Though dance has been a meaningful signifier and practice, what it has said about men has changed substantially in a century’s time. A few examples can illustrate those changes. At the beginning of the twentieth century, dance was a well-accepted practice for white upper-class men. They were expected to be leaders on the dance floor. The current stereotype that white men cannot dance did not exist. Dance increased in popularity in the first two decades of the twentieth century as the growth in urban nightlife, and the construction of large ballrooms, made dancing an extremely popular activity across gender, race, and class categories. Around 1914 a moral panic arose that stigmatized southern European men for their association with sensual dancing. Contemporary stereotypes about who can and cannot dance have roots in the post–World War II era when multiple forces, including suburbanization, the proliferation of highly differentiated

34   Maxine Leeds Craig radio stations, and intensified homophobia, pushed many white men away from dancing. By tracing masculine embodification from the perspective of a dancefloor, I was able to view gender, racial, class, and sexual categories intersect and transform. Interviews permitted me to hear men’s accounts of how they were encouraged to accept that they were naturally awkward. As I listened to recollections of awkward and thrilling school dances and drunken forays to dance at clubs, I learned how men gained racialized, sexual, and class forms of embodiment. Men developed forms of embodiment via practice that took place in the context of racialized, class-located meanings about masculinity. That discourse has changed over time. Archival sources and fiction helped me to reconstruct a record of the change.

Writing about the Mess The history of men’s relationship to dance is a messy story in which the boundaries surrounding whiteness and masculinity expand and contract, and in which the racial, class, and sexual meanings attached to popular dance genres and to the act of dancing itself have changed over time. The story is messy because none of the intersecting categories that structure it are stable. Critics of the artificial and obscurant neatness of some applications of intersectionality contrast those depictions to the “messiness” of social life (Browne and Nash 2010, 14), the “messiness of subjectivity” (Nash 2008, 4), and “the messy-yet-unified experiential realm” (Ferguson 2016, 44). Puar suggests that the concept of “messy networks” is more apt than intersections for expressing the “messiness of identity” (2007, 211–212). What is the best way to describe a mess when the intent is to expose the systematic, yet not simply organized or coordinated, processes that sustain multiple inequalities? Sutton handed women stacks of concept cards so that they could show her the connections among experiences, social forces, and discursive categories in their lives. Sutton explained that she gathered “diverse women’s accounts about their bodies—their pain, hunger, fear, exhilaration, sexual pleasure, psychosomatic symptoms, and political resistance—[in order to] unravel the workings of intersecting inequalities” (2011, 180). For Sutton the intersecting inequalities form a dense fabric. The sociological work of unraveling involves pulling threads of the fabric to illuminate the ways in which particular intersections had consequences in women’s lives. What words can be used to describe lives structured by multiple forces of social inequality? Bettie demonstrated that sociologists must use identity categories even as we strive to write with noncategorical intersectionality. Language that names race, class, gender, and sexuality is part of what constitutes social structures. For Bettie, “race and gender and sexuality are some of the languages through which we talk about class, class and gender and sexuality are some of the languages through which we talk about race” (2014, xxxiv). Introduced in the late 1980s, the concept of intersectionality encouraged the telling of more complicated narratives. The studies discussed earlier suggest ways of grasping dynamic multidimensionality. They describe worlds in which race, class,

Methodologies for Categories in Motion   35 g­ ender, sexuality, and citizenship as material and discursive forces have infinitely different consequences in individual lives. To describe this, we must not resort to a Borgesian “Library of Babel” that maps all possibilities through every alphabetical permutation. Instead, working with imperfect categories, these scholars have contributed to what we know about how racialization, poverty and wealth, gender as a structure, sexuality, nations, and other structures broadly and in concert shape lives. Perhaps their shared focus on the body aided the work of writing intersectional accounts because bodies are the place where the effects of social forces inevitably meet. Yet methods are only as u ­ seful as the theoretical frames and concepts with which they are put to work. Intersectionality reminds researchers to think of what they have overlooked.

References Bettie, Julie. 2014. Women without Class. 2nd ed. Berkeley: University of California Press. Bordo, Susan. 1993. Unbearable Weight: Feminism, Western Culture and the Body. Berkeley: University of California Press. Bourdieu, Pierre. 1984. Distinction: A Social Critique of the Judgement of Taste. Cambridge, MA: Harvard University Press. Browne, Kath, and Catherine J. Nash. 2010. Queer Methods and Methodologies: Intersecting Queer Theories and Social Science Research. Surrey, UK: Ashgate. Candelario, Ginetta E. B. 2007. Black behind the Ears: Dominican Racial Identity from Museums to Beauty Shops. Durham, NC: Duke University Press. Carbado, Devon. 2013. “Colorblind Intersectionality.” Signs 38, no. 4: 811–845. Casanova, Erynn Masi de. 2004. “No Ugly Women: Concepts of Race and Beauty among Adolescent Women in Ecuador.” Gender & Society 18, no. 3: 287–308. Casanova, Erynn Masi de. 2015. Buttoned Up: Clothing, Conformity, and White-Collar Masculinity. Ithaca, NY: Cornell University Press. Cho, Sumi, Kimberlé W. Crenshaw, and Leslie McCall. 2013. “Toward a Field of Intersectionality Studies: Theory, Applications, Praxis.” Signs 38, no. 4: 785–810. Collins, Patricia Hill. 1990. Black Feminist Thought. New York: Routledge. Cooper, Brittney. 2015. “Intersectionality.” In The Oxford Handbook of Feminist Theory, edited by Lisa Disch and Mary Hawkesworth. New York: Oxford University Press. Craig, Maxine Leeds. 2014. Sorry I Don’t Dance: Why Men Refuse to Move. New York: Oxford University Press. Crenshaw, Kimberlé Williams. 1989. “Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory, and Antiracist Politics.” University of Chicago Legal Forum 1989, no. 1: 139–167. Crenshaw, Kimberlé Williams. 1991. “Mapping the Margins: Intersectionality, Identity Politics, and Violence against Women of Color.” Stanford Law Review 43, no. 6: 1241–1299. Dill, Bonnie Thornton, and Marla Kohlman. 2014. “Intersectionality: A Transformative Paradigm in Feminist Theory and Social Justice.” In Handbook of Feminist Research: Theory and Praxis, edited by Sharlene Nagy Hesse-Biber, 154–174. Thousand Oaks, CA: Sage. Ferguson, Susan. 2016. “Intersectionality and Social-Reproduction Feminisms: Toward and Integrative Ontology.” Historical Materialism 24, no. 2: 38–60. Fields, Jessica. 2016. “The Racialized Erotics of Participatory Research.” WSQ: Women’s Studies Quarterly 44, no. 3/4: 31–50.

36   Maxine Leeds Craig Foucault, Michel. 1978. The History of Sexuality. Vol. 1. New York: Vintage. Foucault, Michel. 1979. Discipline and Punish: The Birth of the Prison. New York: Vintage. Glenn, Evelyn Nakano. 1992. “From Servitude to Service Work: Historical Continuities in the Racial Division of Paid Reproductive Labor.” Signs 18, no. 1: 1–43. hooks, bell. 2000. Feminist Theory: From Margin to Center. Cambridge, UK: South End Press. Kaiser, Susan  B., and Nicole Denise Green. 2016. “Mixing Qualitative and Quantitative Methods in Fashion Studies: Philosophical Underpinnings and Multiple Masculinities.” In Fashion Studies: Research Methods, Sites and Practices, edited by Heike Jenss, 160–180. London: Bloomsbury. Ken, Ivy. 2008. “Beyond the Intersection: A New Culinary Metaphor for Race-Class-Gender Studies.” Sociological Theory 26, no. 2: 152–172. Mohanty, Chandra Talpade. 2013. “Transnational Feminist Crossings: On Neoliberalism and Radical Critique.” Signs 38, no. 4: 967–991. Nash, Jennifer C. 2008. “Re-thinking Intersectionality.” Feminist Review 98: 1–15. Nash, Jennifer  C. 2011. “Practicing Love: Black Feminism, Love-Politics, and PostIntersectionality.” Meridians 11, no. 2: 1–24. Otis, Eileen M. 2012. Markets and Bodies: Women, Service Work and the Making of Inequality in China. Stanford, CA: Stanford University Press. Oxford English Dictionary. 2007. Intersectionality. Oxford, UK: Oxford University Press. http://www.oed.com Puar, Jasbir. 2007. Terrorist Assemblages. Durham, NC: Duke University Press. Strings, Sabrina. 2015. “Obese Black Women as ‘Social Dead Weight’: Reinventing the ‘Diseased’ Black Woman.’ ” Signs 41, no. 1: 107–130. Sutton, Barbara. 2011. “Playful Cards, Serious Talk: A Qualitative Research Technique to Elicit Women’s Embodied Experiences.” Qualitative Research 11, no. 2: 177–196. Vidal-Ortiz, Salvador. 2004. “On Being a White Person of Color: Using Autoethnography to Understand Puerto Ricans’ Racialization.” Qualitative Sociology 27, no. 2: 179–203. Young, Iris Marion. 1980. “Throwing Like a Girl: A Phenomenology of Feminine Body Comportment, Motility, and Spatiality.” Human Studies 3: 137–156.

chapter 3

Pr egna n t Em bodim en t a n d Field R esea rch Jennifer Randles

Field research is an inherently embodied experience. Researchers are not objective observers; they are active, situated subjects whose bodies are texts upon which social meaning is projected and through which cultural analysis is produced. Empirical attention to embodiment in fieldwork engages a unique kind of critical methodology, one that takes reflexivity beyond analytic consideration of how the researcher’s social position, values, and perspective shape the research process, to one that considers how bodies themselves are implicated in fieldwork (Coffey 1999; Turner 2000). Previous research has analyzed how researchers’ social and bodily characteristics—including gender, race, class, sexuality, and age—shape the collection of qualitative data (Warren and Karner 2015). Yet little of the methodological literature on reflexivity and researcher standpoint has meaningfully analyzed how embodiment can be an important source of data and utilized to facilitate rapport and mediate social distance in research encounters. Just as there is a need for the methodological literature to consider more carefully the role of embodiment in fieldwork, the embodiment literature would also benefit from a greater focus on method. Both require careful attention to how bodies and their at­tend­ant meanings shape fieldwork encounters and data collection and analysis. In this chapter, I draw on my experience as a visibly pregnant, middle-class white woman studying low-income men of color who participated in a US governmentfunded “responsible fatherhood” program. As a private experience with a particularly public nature, pregnancy invites social commentary and questioning in ways that other embodied statuses rarely do. This presented a unique opportunity to explore what psychologist Maree Burns (2003, 1643) termed embodied reflexivity, which entails “interrogating the impact of the body on the knowledge and meanings produced” through research. As an important case of how researcher standpoint can influence field research, I show how I strategically deployed my pregnant embodiment to facilitate greater trust, empathy, and insight in studying disadvantaged men.

38   Jennifer Randles I conducted in-depth interviews with fifty fathers, beginning when I was barely showing, 4 months pregnant, and ending with the last interview 10 days before my daughter was born at full term. Despite significant social differences between respondents and me, my pregnant embodiment evoked memories of their transition to parenthood and the meanings they attached to parental responsibility. This provided an important window into how marginalized fathers narratively construct their paternal identities. My pregnancy was an embodied state—and an analytic text—onto which fathers projected their own parenting successes, challenges, and aspirations. It encouraged respondents to disclose important messages about why they were good fathers and the need to challenge stereotypes that they were lesser parents because of their race, class, or gender. It ultimately created a unique kind of rapport, one that allowed me to negotiate a key aspect of insider status with otherwise socially dissimilar individuals. Using this case, I analyze how embodied reflexivity can be an illuminating standpoint from which to better understand those we study—not just as observers recording information about social processes, but as embodied participants in the co-construction of social meanings.

Embodiment in Fieldwork: From Presentation of Self to Site of Knowledge The body is often an “absent presence” in qualitative research (Davis 1997). It is there in a corporeal sense, but often missing from investigation and analysis. Qualitative researchers typically receive methodological training about how embodied social characteristics shape their role, status, and incorporation in the field. A researcher’s access to and rapport with respondents can depend significantly on how these characteristics shape the behavioral and relational expectations respondents bring to fieldwork encounters (Warren and Karner 2015). How much researchers are able to conform to these expectations influences their abilities to establish trust and reciprocity with respondents (Coffey 1999). Field researchers are therefore generally attentive to their presentations of self and seek to manage bodily impressions through deliberate choices about dress, speech, and mannerisms (Goffman 1956). They are also usually aware of how embodied characteristics, such as those related to gender or race, can facilitate or impede field access and rapport (Schwalbe and Wolkomir 2002; Warren and Karner 2015). Alas, analytic attention to embodiment in fieldwork is largely relegated to peripheral methodological discussions of appearance and shared or disparate embodied social ­statuses (Coffey  1999). Those who offer more thoughtful and extensive analyses of embodiment in field research tend to assume fieldwork roles that directly depend on the performance of particular physical skills or activities, such as Wacquant’s (2004) turn as an apprentice boxer or Hoang’s (2015) work in Vietnamese hostess bars. Most methodological discussions therefore tend to miss the full significance of how the body is ­central

Pregnant Embodiment and Field Research   39 to all fieldwork encounters and social analyses, which fundamentally involve the observation and interpretation of bodies and meanings attached to them. As Wacquant (2004, vii) argued, the body is more than a collection of social statuses; it is a set of bodily sensations, “a being of flesh, nerves, and senses.” These sensations are analytically significant in fieldwork. Even for research that does not explicitly focus on bodies or embodiment, in crafting an acceptable fieldwork persona, a researcher must respond to and negotiate bodily norms of the field site, rendering the body a key site of inquiry (Coffey 1999). Given the interpretive nature of qualitative research, attention to embodiment is a particularly important consideration in qualitative methodology. An interpretive approach assumes that social knowledge is neither objective nor subjective, but rather intersubjective and based on the shared meanings and understandings between respondents and researchers (Warren and Karner 2015). Findings from qualitative research are therefore co-constructed representations of the social world that mutually reflect the lived experiences of those being studied and the interpretations of those doing the studying (Turner 2000; Warren and Karner 2015). This element of qualitative methodology means that qualitative researchers must be reflexive about how they contribute to the intersubjective construction of research accounts and representations (Turner 2000). This necessitates a type of reflexivity that engages the researcher as more than a thinking intellectual subject with a particular social position and presentation of self. It positions the researcher as an embodied object of analysis with symbolic significance in the intersubjective construction of meaning. Feminist social scientists have long argued for a broad conceptualization of reflexivity that incorporates embodiment. Guided by feminist standpoint theory highlighting how the researcher’s social identity shapes ethnographic encounters, data, and analysis (Collins 1990; Harding 1991; Smith 1991), feminist scholars emphasize how the researcher is always a “positioned subject” (Rosaldo  1989) who creates “situated knowledge” (Haraway  1988). Situated knowledge is embodied knowledge, as it is only through direct  embodied experiences that we study, analyze, and interpret the social world (Smith  1988,  1991). Feminist epistemology therefore assumes the body as a primary source and subject of knowledge creation (Pitts-Taylor 2014). Drawing on legal scholar Kimberlé Williams Crenshaw’s concept of intersectionality (1989), sociologist Patricia Hill Collins (1990) theorized how different embodiments of race and gender create distinct epistemic grounds for situated knowledge claims about lived experience. That is, how we embody various social statuses is central to knowledge—especially what we know and how we come to know it. Yet reflexivity in qualitative research tends to be limited to researchers taking account of themselves with only limited attention to how those selves are embodied, as if reflexive inquiry is something that occurs only in the mind (Sandelowski 2002). A full embodied reflexivity (Burns  2003) involves attention to “embodied intersubjectivity” (Finlay 2005), or how the bodies of respondent and researcher are intertwined into an empathic connection forged through a reciprocal exchange of bodily experiences. Sharma, Reimer-Kirkham, and Cochrane (2009) argued specifically for an “epistemology of embodiment” that attends to researchers’ emotional awareness and bodily states

40   Jennifer Randles and what they reveal about research encounters. This kind of embodied reflexivity adheres to feminist standpoint theories, which are less concerned with an individual’s account of her role in the research process, and more with what a reflexive analysis of the researcher’s experiences can teach us about the social processes and relations of power under investigation (Hartsock 2006). The researcher’s embodiment per se is not analytically noteworthy; what it can tell us about the social issues we seek to elucidate is. Bodies are created through relationships of power and bear the marks of social signification. They therefore exist as windows into the power relations and meanings researchers want to understand.

The Belly Effect: Embodied Reflexivity and Pregnancy Embodied reflexivity entails recognizing that embodiment is largely social performance involving the management of the body in line with cultural conventions (Butler 1993; Foucault 1978; Grosz 1994). This is particularly evident with the pregnant body, which like all bodies is both a personal site of lived experience and an external inscriptive surface upon which others impose meanings and performative expectations (Grosz 1994). Women’s bodies (Bordo 1993), especially pregnant women’s bodies (Upton and Han 2003), are subject to myriad forms of social control. As sociologist Elena Neiterman (2012, 372–373) argued, just as women are expected to “do gender” (West and Zimmerman 1987) by performing femininity, pregnant women are expected to “ ‘do’ pregnancy [by] actively performing socially established practices that signify the status of the body as pregnant.” More than just a bodily state, pregnancy is a symbolic performance, a text and medium of culture. Few types of bodies are subjected to such heightened social surveillance informed by public discourses regarding health, motherhood, gender, class, race, and sexuality (Nash 2012). As with gender, the “right” way of doing pregnancy depends on situated social scripts negotiated in interactions with the audience to whom the performance belongs (Neiterman 2012). Unique challenges and opportunities arise when that performance belongs to research participants. Some researchers have written about the ramifications of conducting field research while pregnant, including physical challenges, effects on access and rapport, and how respondents invest pregnant bodies with particular meanings of parenting and families (Reich 2003; Salisbury 1994; Schrijvers 1993). Sociologist Jennifer Reich (2003) studied the US child welfare system as a pregnant researcher, including ethnographic observations of child removal. She experienced trepidation about how pregnancy would interfere with her access and ability to collect data, a concern primarily fueled by well-founded anxieties about how pregnancy is often viewed negatively in academia. Understandably, many researchers prefer to remain professionally unmarked by the gendered, maternal, and disabled social status that pregnancy denotes. Reich (2003) reflexively described how being publicly pregnant meant having her body become part

Pregnant Embodiment and Field Research   41 of research encounters, rendering her more participant than objective observer. She explained: “I realized that while I was in the field to study other people’s reproduction and families, my own were equally present and observable. . . . I was particularly aware of how my body invoked awareness of my gender, my sexuality, and my marital status” (Reich 2003, 356, 362). Her pregnancy became a source of data, an opportunity to study the social expectations associated with parenthood, especially mothering. Pregnant bodies elicit a strong public gaze; people are more apt to touch, evaluate, and talk about them (Bordo 1993; Nash 2012; Reich 2003). This tendency to talk openly in response to a visible pregnancy can be a rich, if invasive and discomfiting, source of data. Political theorist Iris Marion Young (2014, 46–47) theorized the pregnant body as “decentered, split, or doubled in several ways” and the pregnant person as “experienc[ing] her body as herself and not herself,” as a set of shifting bodily boundaries. Likewise, the pregnant ethnographer can experience herself as a set of shifting analytic boundaries, a splitting into both observer and participant. She is simultaneously a body doing analysis and a body under investigation revealing meanings central to that analysis. Rather than a liability, pregnancy and parenthood can be grounds for credibility in the field, facilitating access and rapport by invoking common sources of situated knowledge (Neiterman 2012; Reich 2003). Neiterman (2012, 375) explained: “My own experiences of pregnancy and childbirth gave me credibility not only as a researcher, but also as a mother to engage my participants in conversations about pregnancy and childrearing.” Moreover, pregnant bodies are typically perceived as nurturing and nonthreatening, which can facilitate access and rapport by reducing respondents’ discomfort (Reich 2003). Depending on the context and topic, a researcher’s pregnancy can be pleasing or painful for respondents. Reich (2003) described interacting with other mothers involved in the child welfare system, some for whom her pregnancy was a source of solace, others for whom it was a stark reminder that their children were being taken away. In each case, her pregnancy offered insight into the politics of reproduction, both as a way of accessing others’ experiences of parenthood and as an analytic tool with which to understand them. The sociologist Amanda Coffey (1999) also described how the physical and social experiences of pregnancy as a field researcher studying mothers and mothering can generate a unique kind of empathy for respondents. Yet, as Neiterman (2012) noted, social distance can constrain this kind of empathic connection, especially when researchers and respondents do not share characteristics associated with “good” mothering. Widely known social norms surrounding pregnancy and parenting that characterize white, married, and affluent women as proper mothers mean that “Women are usually well aware of their position on the social ladder of motherhood” (Neiterman 2012, 376). Researchers do not always sit on the same rung of that ladder as their respondents. This also raises the question of how pregnant embodiment may shape fieldwork encounters about parenting when respondents have never directly experienced pregnancy.

42   Jennifer Randles

Pregnant Embodiment and Studying Fathers Less has been written about being pregnant while conducting field research on fatherhood. This was the position in which I found myself when, in 2014, I began research on men who participated in fathering programs. In 2010, the US Congress approved federal funding for “responsible fatherhood” programs to support education, job training, and family skills classes for disadvantaged fathers. I studied participants in one of these programs I pseudonymously call “DADS.” Founded in 2012, it served fathers 16–45 years old and offered access to a high school completion program, paid vocational training, and relationship and parenting education. I conducted in-depth interviews with fifty fathers from September 2014 to March 2015, which coincided with my first pregnancy. I asked the men about their routes to fatherhood, why they enrolled, their views of fathering, and their experiences in the program. All the interviewees identified as cisgender fathers of color, and most were living in poverty and had little formal education. Thirty-two self-identified as Black or African American; twenty-three as Hispanic, Latino, or Mexican; eight as multiracial or multiethnic; and one as Native American. Forty were employed, most by the DADS program, and they earned $200–$600 per month. Only one respondent had a 2-year college degree. Sixteen had a high school diploma or its equivalent, and the remaining fortyseven had not yet graduated from high school. Forty-two were attending the DADSaffiliated high school at the time of the research. Despite significant social dissimilarities in terms of gender, race, and class, my embodiment as a pregnant person seemed to activate my parental role in the field in crucial ways that facilitated rapport between the men and me. Central to methodological considerations of researcher positionality and reflexivity is whether the researcher shares social statuses with respondents. Previous writings on pregnant embodiment in fieldwork have focused on women studying other women and using their common experiences of pregnancy and/or mothering to establish credibility and shared ep­i­ste­mic grounds of situated knowledge. In these cases, researchers were, in many if not all ways, insiders who shared status group memberships and experiences with those they studied. There are both costs and benefits associated with insider and outsider status. Insider status can facilitate acceptance and access; it can also impede ethnographic detail when respondents assume similarity and neglect to fully explain their individual experiences (Dwyer and Buckle  2009; Schwalbe and Wolkomir  2002). Schwalbe and Wolkomir (2002) described how “bonding ploys”—such as “You know what I mean” responses from interviewees—are more likely to arise when researchers and respondents share characteristics. This risks losing crucial elaboration from a respondent’s unique perspective. Alternatively, outsider status can hinder the trust more easily enabled by a sense of common ground. Yet a researcher’s outsider status can also generate more nuanced data when respondents go to greater lengths to explain their experiences to someone assumed to lack insider knowledge.

Pregnant Embodiment and Field Research   43 These considerations of shared or disparate status group memberships have profound implications for embodiment in field research and embodied reflexivity. Researchers can strategically deploy embodiment in the field to facilitate rapport and empathy in research encounters. Because any social status and the meanings attached to it are contextual, field researchers can engage in what Mazzei and O’Brien (2009) call “active positioning.” This is an interactive and negotiative process that involves reading which characteristics matter most in field encounters, how scripts about these characteristics operate, and then using this knowledge to build rapport. Active positioning entails recognizing that social roles and the meanings attached to embodied characteristics are malleable and can be used to one’s analytic advantage. This happens not by drawing false equivalencies or by glossing over fundamental differences, but by making shared experiences more salient. It also involves acknowledging that rapport is not just about sameness or insider status, but about identifying points of empathic connection between researchers and informants that can be activated in fieldwork. Successfully utilizing these avenues of connection in the field entails recognition of common experiences without erasing how social distinctions, such as gender, race, and class, differentially and profoundly shape those experiences. This quickly became evident to me during my study of the DADS program.

Pregnant Embodiment in Fathering Spaces: Negotiating Insider/Outsider Status Staff viewed the DADS fathering classes as a “men’s space” where a woman’s presence could be disruptive and interfere with fathers’ abilities to talk openly and honestly about their fathering insecurities and experiences. I too was apprehensive about attending a class. Given that lessons included “What It Means To Be a Man” and “The Father’s Role,” I worried that being neither a man nor a parent would cause participants to question my reasons for being there. During the one class I could access, I was nearing the start of my fifth month of pregnancy and had begun to show. Taught by Manesh, a 39-year-old, Asian American DADS case manager, this session brought together five fathers—two African American, two Latino, and one Native American, all in their 20s and 30s—on a fall Friday afternoon in a homeless shelter to talk about how they could be better dads. The fathers and I sat together at a rectangular table in the middle of a small meeting room for 10 minutes waiting for class to start. They chatted with one another, but said little to me, despite my strained efforts to make small talk. I sat between two fathers on one side of the table that barely concealed and bumped up against my just visible belly. Upon asking if I was a new instructor, I disclosed that I was a professor studying fatherhood programs. They responded with affirmative nods, but my status as a researcher invited neither interest nor further comment. Manesh started the class by asking people to introduce themselves and tell everyone about their children—how many they had, what their names were, and their favorite activities. Manesh motioned for the father sitting to my right, Caleb, a 39-year-old, Native American father of three, to begin. After Caleb shared that he was there to regain

44   Jennifer Randles custody of his youngest child, it was my turn. Initially thinking Manesh might introduce me as a researcher, he simply deferred to me to answer the same three questions. It was the first time during my fieldwork that I mentioned my pregnancy without being asked, and I was nervous about how revealing it would affect my credibility. I noted that I did not yet have any children, but that I was expecting my first in the spring. The group immediately offered a collective and enthusiastic congratulation, and one father excitedly exclaimed: “Good for you! It’s the best thing you could ever do.” Once they knew I was pregnant, they eagerly spoke to me with a sense of familiarity and accepted me into the group. The remainder of the class focused on experiences with our own fathers, discipline styles, and setting parenting goals. During the break, fathers inquired about my due date, if I knew the baby’s sex, possible names, and if I was nervous or excited. When before my presence as a woman seemed to silence and disrupt what the men might have otherwise said about fathering in these men-only spaces, upon learning of my pregnancy, the shared parenting status it signaled became a preferred topic of discussion. My pregnancy was its own kind of fieldwork disruption, but one that inspired detailed conversations about parenting and gender instead of having a chilling effect on research encounters. After first seeing me as a researcher with whom they had little in common, fathers accepted me as a fellow parent who was relatively inexperienced and in need of advice and support. This revealed as much about how they saw me as it did about how they saw themselves. After that class and the response my pregnancy announcement created, I was more forthright about disclosing my pregnancy during interviews. Similar to what Reich (2003) experienced, I found that, rather than undermining my credibility as a researcher, my pregnancy lent me greater authority and trustworthiness. My pregnant embodiment also revealed normative assumptions about parenthood and gender that might not have come up otherwise in the interviews. Questions about my baby’s sex invariably led to discussions of fathers’ views about essential differences between girls and boys and how one should parent to account for these differences. Questions about whether I had picked out a name segued into explanations about how fathers named their own children. Questions about what type of mother I thought I would be prompted men to poign­antly describe their own parenting skills and aspirations. With each interview, my pregnant body grew, and with it seemed to grow respondents’ interest in my pregnancy and their tendency to reference it in interviews. It encouraged them to show me pictures of their children on their phones, tattoos of children’s names and initials, and gifts they had recently purchased for upcoming holidays and birthdays. Being pregnant also presented some practical challenges, such as the need for frequent trips to the restroom carefully timed so as not to be necessary during interviews. Especially in my third trimester, fathers clearly noticed my constant fidgeting and readjustments. During an interview conducted when I was 8 months pregnant, the respondent noticed the baby’s fist making movements under my snug-fitting ­maternity shirt. Asking if that was the baby’s hand, I humorously replied that she was particularly interested in what he was saying and wanted to know more. A similar

Pregnant Embodiment and Field Research   45 s­ ituation prompted another expectant father to show me a video on his phone of how his girlfriend’s belly moved with the undulations of the baby’s “dancing.” My pregnant belly became a third entity in these research encounters. Men’s responses to me as a pregnant researcher gave me valuable insight into how they perceived parenting and its importance in their overall identity. My pregnancy signaled a “master status” of parent. Conceptualized by sociologist Everett Hughes (1945), “master status” refers to the demographic characteristic most central to a person’s identity and behavior and the trait most influential for how others perceive and treat that person. In many ways that I did not anticipate, my pregnancy and the discussions it prompted became a primary way I negotiated the liminal space I occupied between insider and outsider status. Respondents and I were so unalike according to the key demographic characteristics that shape one’s life chances and experiences of parenting. They all identified as men of color; I am a white woman. Most of them had not yet finished high school, and few had ever stepped foot on a college campus; I am a college professor with a PhD. They were living in poverty and struggling daily to make financial ends meet; I am comfortably middle class. Most were younger or older than me by at least 5 years. In almost all ways, I was a far removed outsider to their social worlds and lived experiences. My pregnancy presented an embodied opportunity to relate to them as an insider to the world of parenting. Though I knew that their parenting challenges were far removed from my own—they struggled to provide food for their children, while I worried about how to manage family leave from my stable, well-paying job—I gained credibility as an insider by actively positioning myself as a future parent. Most important, I recognized them as fellow parents. I embodied all the characteristics normatively associated with “good” parenting—femininity, whiteness, affluence—while their bodies bore the gendered, racialized, and classed marks associated with the stereotype of the absentee father. In a society that vilifies poor men of color as “deadbeat dads” who care little for their children and shun parenting responsibilities (Edin and Nelson 2013), acknowledging respondents foremost as parents was key to developing and maintaining rapport and reciprocity. Fathers described enrolling in DADS to challenge racist and classist assumptions that they were uncommitted to being responsible parents. Much of their narratives offered during the interviews were expository attempts to cast off the “deadbeat dad” label by explaining how they were dedicated to “being there” for their children financially, emotionally, and relationally. They wanted to be better “providers,” but not only of money; most were equally dedicated to providing children with more time, care, and opportunities. Outside the program, they were typecast as absentee dads because they were not white, high-earning, residential, married fathers. Inside the program, they were viewed, including by me, as who they believed they truly were: men trying to overcome significant social and economic disadvantages to become better parents. Douglas, a 23-yearold, African American father of one told me: “Especially with minorities, you hear a lot of things like, ‘Oh, you Black or Mexican, you don’t raise your kids. . . . [DADS] is like a trophy. This is something we did as fathers. We’re learning, we’re becoming good fathers.

46   Jennifer Randles Can’t nobody put us in the minor league right now.” Similarly, Cayden, a 24-year-old, African American father of two, explained: You got to wonder how it feels to wake up in this skin every day. . . . You already ster­ e­o­typed. I might get shot in the neighborhood I’m walking through, but I’m still taking that risk to get to work, get my kid some diapers. . . . The program let me get out of the game, get me a job, so that part of my life my son doesn’t even know about. All I want him to see is me hanging my certificates I get from here on the wall.

Most respondents likewise described DADS as a unique situated space where they were treated as parents, not as other stigmatized statuses—gang member, ex-convict, dropout—that undermined their identities as hard-working, responsible fathers. Respondents described participating in the program primarily to strengthen their master status as worthy parents and to encourage others to see them in this way. To them, my pregnancy signified my presumed efforts to do the same. Though our lived experiences of parenting were unfolding in highly unequal socioeconomic circumstances, fathers sensed that we shared a commitment to our children’s well-being. This was grounds for a collective experience and prompted fathers to offer me advice about how to be a good parent. Marcus, a 21-year-old, African American father of one, recommended that: You have to hold, nurture, and rub the head. I like that part, cuddling my son. But oh, the late nights and mornings trying to figure out what’s wrong, and you don’t know if he’s hungry. That took a lot of learning. After a while, you get to know your child. I could sit there, and when [son’s name] was 8 months, I could tell when he was about to wake up. He would wake up, look around, and be looking for me.

This account, embedded in Marcus’s advice to me about becoming a new parent, was central to his narrative about how committed he was to “being there” for his son. He concluded: “Noticing all that is about being here because my dad, he wouldn’t have noticed stuff like that. You don’t unless you’re there. I spend a lot of time with my son.” In acknowledging me as a future parent and offering this advice, he presented himself as a responsible father who defied the absentee Black dad stereotype. In this and many other field encounters, my pregnant body became an important tool for negotiating a shared master status with fathers. It also became an important analytic text upon which fathers projected meanings about gender and parenting.

“Doing” Gender and Pregnancy in Field Research That I was exclusively interviewing men made my pregnancy particularly relevant. Schwalbe and Wolkomir (2002, 203) explained why researchers should be attuned to how men perform gender and engage in “efforts to signify, in culturally prescribed ways, a creditable masculine self ” during interviews. Men’s verbal responses, bodily

Pregnant Embodiment and Field Research   47 comportment, and reactions to the embodied characteristics of others are part of this signification process and therefore become valuable sources of data, especially in interviews about gender-related topics. These “masculinity displays” (Schwalbe and Wolkomir 2002) are invariably embodied as part of the performative and interpretive nature of gender enactment and tailored to the specific interviewer and interview situation at hand. Because informants respond to researchers’ identity work, researchers’ embodiment must be treated as data too. The interview encounter is potentially threatening to a respondent’s masculine self because it challenges a core component of normative masculinity in US culture: being an authority figure who is in control (Schwalbe and Wolkomir 2002). This may be pronounced among men who do not have the social characteristics typically associated with hegemonic displays of masculinity, such as low-income men of color (Connell 2005). One way of reducing the perceived threat to men’s masculine sense of self is to encourage them to take charge as experts, of both their own experiences and the research topic (Schwalbe and Wolkomir 2002). By seeing past taken-for-granted gender enactments and mining them as useful sources of data about men’s lived experiences, researchers’ attention to embodiment can be a lens into how gender is a joint accomplishment in the interview encounter. As part of their masculinity displays as successful providers, broadly defined, the fathers I studied were invested in performances as responsible fathers committed to being there for their children. My first interviewee, Jonathan, 23 and Hispanic, explained in poignant detail his financial and emotional commitment to his two young sons and his desire to pass on to them his love for gardening. Jonathan’s response to my pregnancy was also a masculine display. After asking me if I had seen a sonogram of my baby, Jonathan described how, as a man, he found it “kind of weird to see the baby on the screen with all its little fingers and toes.” In asking if I had finished decorating the nursey, he explained how “women really get into all that stuff,” and that, while he did let his girlfriend take charge of the décor, he proudly made and hung on his newborn’s nursey wall a wooden nameplate made with this eldest son. My pregnant embodiment also evoked responses that allowed fathers to position themselves as masculine caregivers and sexual beings. Many respondents asked questions of concern about my pregnancy, including if I was tired or if I needed a break. One father disclosed near the end of our interview that he had a fetish for pregnant women, but that he was able to keep his composure. Otherwise, my pregnancy reduced the tendency for men to sexualize me in ways that invited flirtation. To the extent that fathers used bonding ploys with me, it was obviously not to signal shared experiences of gender, class, or race. Rarely did respondents reply with “You know what I mean” in our interviews, likely because they rightly assumed that I did not know what their parenting experiences were truly like. Following Schwalbe and Wolkomir’s (2002) advice to situate men as experts, I positioned interviewees as experienced parents by asking what advice they had for me as someone on the verge of becoming a new parent. Respondents saw me as someone in need of parenting advice they felt qualified to give. Just as fathers were performing gender, I was “doing” pregnancy in socially normative ways by asking for and accepting this advice (Neiterman  2012).

48   Jennifer Randles Interviews thus revealed co-constructed meanings that emerged from the intersubjective performance of gender and pregnancy as embodied characteristics. Reflexively reflecting on this allowed me to understand how fathers’ advice was an important lens into key aspects of their paternal identities, including what they thought responsible parents do, feel, and say regarding their children. Fathers told me to “be open and teachable,” recognize that parenting is a “learning experience,” and not to assume that I “had all the answers.” Justin, a 34-year-old, African American father of three, explained in acknowledging my pregnancy: “New parents, we think we’re ready, and we’re going to know what to do, but parenting is a learning experience. You learn as you go.” Because most of the fathers had more than one child, they shared how parenting changes when you have multiple kids. Some told me it got easier with two or more, while others explained how it got more difficult with subsequent children. Taylor, a 24-yearold, African American father of two, warned me to “be patient” because “You’re going to lose a lot of sleep. Stay strong because it can get stressful at times.” Most fathers likewise warned me about the sleep deprivation that typically happens while caring for a newborn. Many also gave me relationship advice, offering a window into fathers’ own co-parenting successes and challenges, especially involving issues of what mothers expected of them because of gender stereotypes about breadwinning and masculinity. Presciently predicting the greatest challenge during my transition to parenthood—the constant balancing of paid work and caregiving—Cayden told me earnestly: “Just stick through it with your man. There’s going to be a lot of ups and downs. . . . You’ve got to cut your time short, and sometimes, it’s just the scheduling of it all. You know you love each other, but it’s the schedule. That’s the hardest part. Changing diapers and stuff like that, it’s pretty simple.” Jeremiah, a 24-year-old, African American father of one, similarly advised: “The person you’re with, make sure that’s what both of you guys want, not just one, because it takes two. Make sure you communicate well. Stay loyal and support each other, be a good mother, and make sure you have a good baby’s father that loves you for who you are, not because of your job, not because of your income.” Jeremiah echoed other fathers who feared that their children’s mothers were only interested in them for the money they could make and would keep their children away when they could not provide a lot. Much advice also pointedly revealed gendered understandings of who was primarily responsible for childcare. Udell, a 23-year-old, Latino father of two, told me that, as a mother, I needed to give constant attention to my child. He explained: “My girlfriend, she’ll go to work at a night shift, and she’ll come home in the morning, and that’s when the kids are waking up. She’s just laying right there, not giving them any attention. Kids, just have good conversations with them, play with them, make them laugh, smile, or if they feel sad, talk to them.” Easily assuming the roles of experienced parent and masculine authority, fathers were especially eager to share advice about parenting a newborn and assuage any anxieties I had about becoming a parent. They challenged common misperceptions about having a baby, offered health advice, and shared tips for sleep training and discipline. Owen, a

Pregnant Embodiment and Field Research   49 20-year-old, Black/Latino father of three, told me: “The first one is the easiest. . . . Some say they’re harder, but they’re lying to you. You’re going in to this expecting all types of things. The next one you’re going to be, ‘Oh, this is going to happen.’ But it might not happen. Watch what you eat because I think whenever moms get diabetes, it’s bad. It’s not good for the babies or the moms. Just eat healthy.” Elias, a 21-year-old, Latino father of two, informed me about an app I should download on my phone to track my baby’s due date and what was happening week by week in my pregnancy. In a fitting turn, Harris, an 18-year-old, African American father of one, recommended the DADS program to me, noting that “This is a nice program. They teach you a lot. They taught me a lot, and I’m pretty sure it could teach you a lot too.” These responses to my pregnant body were crucial data. I learned a lot about their experiences of parenting by listening to and understanding what they anticipated for mine. For the most part, my pregnancy was a positive aspect of the interviews. But for some my pregnant embodiment was a painful symbol of nonexistent or strained relationships with their children. In the most challenging interview I conducted for the project, Emmett, 24 and African American, described through tears the trauma and pain he experienced after losing his only child when she was four weeks old to sudden infant death syndrome (SIDS). He described in our interview, conducted only a few months after her passing, how he was estranged from his daughter’s mother throughout her pregnancy. Emmett congratulated me several times while longingly looking at my large belly, a visible reminder to him that his baby was gone. Other fathers commented on how my pregnancy reminded them of their difficult or tenuous routes to parenthood. Several men described not knowing they were fathers until after the babies were born. Some were still unsure of biological paternity at the time of the interviews. My pregnant embodiment recalled for many men their unstable relationships with their children’s mothers during pregnancy and how they wished it had been otherwise. These interviews clearly revealed how respondents invested my pregnancy with significant meaning around issues of parenthood, co-parenting, and what it means to be a good father.

Conclusion Challenging the simplistic insider/outside dichotomy, Dwyer and Buckle (2009) argued that researchers should inhabit a conceptual “space between” that recognizes how we are simultaneously like and unlike those we study. An individual’s social position sits at the intersection of one’s gender, sexuality, race, ethnicity, class, age, family status, and so on, but is not reducible to any one of these characteristics. Occupying the space between insider and outsider in qualitative research foremost entails appreciation for those we study, openness and authenticity, and the commitment and ability to adequately engage and represent their experiences (Dwyer and Buckle 2009). This is ultimately more important than whether researchers are members of the groups they study and prevents unnecessarily drawing boundaries between researcher and respondent. Embodied reflexivity

50   Jennifer Randles (Burns  2003)—understanding how bodies shape research and the co-construction of intersubjective knowledge—is central to navigating this liminal space in field research. Embodied reflexivity is equally important in data analysis. Critically reflecting on how men responded to me as a pregnant person during the data collection phase shaped how I analyzed the data. After the birth of my daughter a little over a week after conducting the final interview, I took a 6-month break from the project. My views and experiences of parenting changed radically in that half year. I was no longer the pregnant person who conducted the interviews. I was the sleep-deprived and stressed-out parent of an infant who now empathized more with the fathers who shared their stories with me. I could relate more, if only in a limited way, with the identity and relational shifts fathers described as part of their transitions to parenthood. As I went back through the interviews in audio recordings and written transcripts a second and third time, my ­analysis was refracted through this transformation. Their narratives about the desire to become better fathers had a different resonance, and I felt closer to them as an insider to the lived experience of parenting. In other ways I became more of an outsider to their social worlds as low-income men of color struggling to become and have others see them as responsible parents. This too occurred largely through embodied experiences. While changing my daughter, I recalled men’s stories of scrounging for money to buy diapers. While feeding her, I reflected on their explanations of why they enrolled in DADS, if only to earn a minimum wage that would enable them to buy food for their children. The day my daughter turned four weeks old, I recalled my interview with Emmett, the father who lost his daughter 28 days after her birth. This is not to suggest that those who do not have children could not empathize equally with these experiences. Moreover, other researchers unlike me in terms of gender, race, and class might have embodied social statuses that would likely have allowed them to connect with the men I interviewed in other fundamental ways. What it does suggest is that embodied reflexivity necessitates reflecting on how my pregnancy shaped the data I was able to collect and ultimately how I analyzed it. Most researchers will not be visibly pregnant while in the field. All researchers, however, embody social statuses and lived experiences onto which respondents project meaning and intent. This analysis of pregnant embodiment illustrates the importance of bringing analytic attention to the bodies conducting research—and especially the meanings those bodies signify to those we seek to connect with and understand.

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Pregnant Embodiment and Field Research   51 Collins, Patricia Hill. 1990. Black Feminist Thought: Knowledge, Consciousness, and the Politics of Empowerment. New York: Harper Collins. Connell, R. W. 2005. Masculinities. 2nd ed. Berkeley: University of California Press. Crenshaw, Kimberlé Williams. 1989. “Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory and Antiracist Politics.” University of Chicago Legal Forum 140, no. 1: 139–167. Davis, Kathy. 1997. “Embody-ing Theory: Beyond Modernist and Postmodernist Readings of the Body.” In Embodied Practices: Feminist Perspectives on the Body, edited by Kathy Davis, 1–23. London: Sage. Dwyer, Sonya Corbin, and Jennifer L. Buckle. 2009. “The Space Between: On Being an InsiderOutsider in Qualitative Research.” International Journal of Qualitative Methods 8, no. 1: 54–63. Edin, Kathryn, and Timothy J. Nelson. 2013. Doing the Best I Can: Fatherhood in the Inner City. Berkeley: University of California Press. Finlay, Linda. 2005. “ ‘Reflexive Embodied Empathy’: A Phenomenology of ParticipantResearcher Subjectivity.” The Humanistic Psychologist 33, no. 4: 271–292. doi:10.1207 /s1547333thp3304_4. Foucault, Michel. 1978. The History of Sexuality, Volume 1: An Introduction. New York: Random House. Goffman, Erving. 1956. The Presentation of Self in Everyday Life. New York: Anchor. Grosz, Elizabeth. 1994. Volatile Bodies: Towards a Corporeal Feminism. Indianapolis: Indiana University Press. Haraway, Donna. 1988. “Situated Knowledges: The Science Question in Feminism and the Privilege of Partial Perspective. Feminist Studies 14, no. 3 (Fall): 575–599. Harding, Sandra. 1991. Whose Science? Whose Knowledge? Thinking from Women’s Lives. Ithaca, NY: Cornell University Press. Hartsock, Nancy C. M. 2006. “Experience, Embodiment, and Epistemology.” Hypatia 21, no. 2 (Spring): 178–183. Hoang, Kimberly Kay. 2015. Dealing in Desire: Asian Ascendancy, Western Decline, and the Hidden Currencies of Global Sex Work. Oakland: University of California Press. Hughes, Everett Cherrington. 1945. “Dilemmas and Contradictions of Status.” American Journal of Sociology 50, no. 5 (March): 353–359. doi:10.1086/219652. Mazzei, Julie, and Erin E. O’Brien. 2009. “You Got It, So When Do You Flaunt It?” Building Rapport, Intersectionality, and the Strategic Deployment of Gender in the Field.” Journal of Contemporary Ethnography 38, no. 3: 358–383. doi:10.1177/0891241608330456. Nash, Meredith. 2012. Making “Postmodern” Mothers: Pregnant Embodiment, Baby Bumps and Body Image. New York: Palgrave Macmillan. Neiterman, Elena. 2012. “Doing Pregnancy: Pregnant Embodiment as Performance.” Women’s Studies International Forum 35: 372–383. doi:10.1016/j.wsif.2012.07.004. Pitts-Taylor, Victoria. 2014. “A Feminist Carnal Sociology?: Embodiment in Sociology, Feminism, and Naturalized Philosophy.” Qualitative Sociology 38, no. 1 (December): 19–25. doi:10.1007/s11133-014-9298-4. Reich, Jennifer A. 2003. “Pregnant with Possibility: Reflections on Embodiment, Access, and Inclusion in Field Research.” Qualitative Sociology 6, no. 3 (September): 351–367. doi:10.1023/A:1024018326659. Rosaldo, Renato. 1989. Culture and Truth: The Remaking of Social Analysis. Boston, MA: Beacon Press.

52   Jennifer Randles Salisbury, Jane. 1994. “Becoming Qualified: An Ethnography of a Post-Experience Teacher Training Course.” PhD diss., University of Wales, Cardiff. Sandelowski, Margarete. 2002. “Reembodying Qualitative Inquiry.” Qualitative Health Research 12, no. 1 (January): 104–115. Schrijvers, Joke. 1993. “Motherhood Experienced and Conceptualized: Changing Images in Sri Lanka and the Netherlands.” In Gendered Fields: Women, Men and Ethnography, edited by Diane Bell, Pat Caplan, and Wazir Jahan Karim, 143–158. New York: Routledge. Schwalbe, Michael  L., and Michelle Wolkomir. 2002. “Interviewing Men.” In Handbook of Interview Research: Context and Method, edited by Jaber F. Gubrium and James A. Holstein, 203–219. Thousand Oaks, CA: Sage. Sharma, Sonya, Sheryl Reimer-Kirkham, and Marie Cochrane. 2009. “Practicing the Awareness of Embodiment in Qualitative Health Research: Methodological Reflections.” Qualitative Health Research 19, no. 11 (October): 1642–1650. doi:10.1177/1049732309350684. Smith, Dorothy  E. 1988. The Everyday World as Problematic: A Feminist Sociology. Boston, MA: Northeastern University Press. Smith, Dorothy E. 1991. The Conceptual Practices of Power: A Feminist Sociology of Knowledge. Boston, MA: Northeastern University Press. Turner, Aaron. 2000. “Embodied Ethnography: Doing Culture.” Social Anthropology 8, no. 1 (February): 51–60. doi:0.1111/j.1469–8676.2000.tb00207.x. Upton, Rebecca L., and Sallie S. Han. 2003. “Maternity and Its Discontents: ‘Getting the Body Back’ after Pregnancy.” Journal of Contemporary Ethnography 32, no. 6 (December): 670–692. doi:10.1177/0891241603257596. Wacquant, Loïc. 2004. Body & Soul: Notebooks of an Apprentice Boxer. New York: Oxford University Press. Warren, Carol  A.  B., and Tracy Xavia Karner. 2015. Discovering Qualitative Methods: Ethnography, Interviews, Documents, and Images. New York: Oxford University Press. West, Candace, and Don H. Zimmerman. June, 1987. “Doing Gender.” Gender & Society 1, no. 2: 125–151. doi:10.1177/0891243287001002002. Young, Iris Marion. 2014. On Female Body Experience: “Throwing Like a Girl” and Other Essays. New York: Oxford University Press.

chapter 4

Sensory Ex per ience AS M ethod Kelvin E. Y. Low and Noorman Abdullah

Fieldwork encounters are both sensorial and corporeal. The researcher’s body and sensory faculties are actively and experientially involved in such interactional contexts. In this chapter, the authors reflect upon their earlier research vis-à-vis extant debates on the centrality of the body and senses in qualitative research. By focusing on three sensory encounters—“sensing race,” “sensing gender,” and “sensing heritage”—the authors foreground the ways through which bodily and sensory experiences work as method in the generation and theorization of data. This analysis is anchored upon embodied reflexivity, thereby recognizing and engaging with the authors’ own subjectivities as researchers and intersubjectivities with others (Pink 2009; Turner and Norwood 2013). This endeavor is key toward underlining a range of sensory methodologies that have gained traction over the last two decades (Ellingson 2006; Low 2013a; Sandelowski 2002; Vannini, Waskul, and Gottschalk 2012; Waitt 2014). Building on extant debates, three main lines of contention frame the discussion: (1) the importance of the senses and the body in qualitative and ethnographic research; (2) shifting relations between researcher and respondents in fieldwork encounters; and (3) the issue of researcher positionality and shifting stances when the body and senses are involved in the research process. The body of the researcher—far from being passive or neutral—undergoes processes of sensory learning and calibration, responding to social interactions in collectively generating data along with respondents. The authors pay careful attention to “the embodied experience of research—the feel, sight, [smell] and sound of it” (Turner and Norwood 2013, 696). Given that the authors are “corporeally present” as researchers, the body is a site of knowledge production as they research through the body (Vannini, Waskul, and Gottschalk 2012; Wacquant 2004; Wainwright, Marandet, and Rizvi 2018). Wacquant (2015, 5) makes a clear distinction between “carnal sociology” and “sensual ethnography,” with a lineage traced to phenomenology. Where the former refers to a sociology from the body, the latter has to do with the “field study of the senses.” For present purposes, this chapter concurs with Pink’s (2009) argument concerning bodily emplacement

54   Kelvin E. Y. Low and Noorman Abdullah and senses in combining these two strands. The body as an agent of knowledge and experience—a position shared by both Pink and Wacquant—occupies an integral role in the production of a sensory ethnography via corporeal intentionality (Merleau-Ponty [1945] 2012). Researching through the body and its sensory faculties would also mean confronting one’s respective ontological awareness with regard to ethnicity and gender, as well as emotional subjectivities. This chapter serves as an empirical and conceptual exploration of carnal sociology (Wacquant 2015) that concomitantly reveals how corporeal and sensory experiences interweave with social structure and social order. Experience in this respect is an ongoing temporal flow of reality received by consciousness, which involves not only cognition, but feelings, expectations, and bodily states (Bruner 1986; Merleau-Ponty [1945] 2012). These experiences are thereby rendered meaningful. Studies on the body, sensory experiences, and data collection in qualitative research span such fields as work and organization (Plourde 2017; Strati 2007), sports and other physical cultures (Allen-Collinson and Hockey  2011; Allen-Collinson et al.  2016; Vannini 2017), and migration and urbanity (Feliciantonio and Gadelha 2017; Low 2013b; Stevenson 2017). These works collectively highlight the pertinence of sensory research that fieldworkers deploy, usually alongside their respondents. This chapter shares Pink’s (2009) position in that it takes sensory approaches to ethnography as a methodology rooted in the anthropology of the senses. Sense perception is both physical and cultural, governed by culture which varies across different parts of the world; members of a particular culture assign meaning to the senses (Classen 1997; Howes 1991). The senses of smell and sight, for example, are invested with different approaches to social reality and sociocultural values. Developing from these arguments, the key principles of sensory ethnography as methodology require reflections on “multisensorial embodied engagements with others” and with their sociocultural and sensory milieu (Pink 2009, 25). Connecting embodiment with ethnographic approaches implies that the researcher’s body forms part of the process of knowledge acquisition and production. The researcher’s corporeal presence influences both the research relationship with respondents and the data collection process (cf. Wainwright, Marandet, and Rizvi 2018). As a corollary, issues of shifting power relations and positionality in research contexts warrant a brief discussion. To grasp the significance of the embodied researcher’s role, one has to move beyond simply placing the researcher in a position of power and at the same time position the researcher as a “neutral, cognitive instrument that is somewhat removed from the situation” (Turner and Norwood 2013, 697). Bodily and sensory co-presence in research contexts needs to be acknowledged and reflected upon. This is especially the case because researchers “do not readily admit discomfort and concern . . . [and particularly] when it is deeply personal and related to our own embodied presence” (Wainwright, Marandet, and Rizvi 2018, 284). Such embodied and sensorial presence requires a calibration of positionality in relation to gender, race, and age, and it also demands attention to various other bodily experiences. Wainwright, Marandet, and Rizvi (2018) engaged in their respective research on aromatherapy massage, hairdressing, and full body massage. In analyzing training and embodied learning processes in these various corporeal contexts, the authors undertook research through their bodies.

Sensory Experience as Method   55 They shifted from being “detached observer-researchers” to “participant-researchers” (2017, 3). Adopting “guinea-pig positions,” they each came into close bodily contact with their respondents and presented themselves as “un-groomed bodies.” Such embodied presentation was accompanied by a sense of “visceral shame/embarrassment” (2017, 4). The trio thereafter reflected upon their experiences: This closeness and familiarity with research participants in an immediate and embodied sense has a bearing on power dynamics. Having our research participants either run their hands through our hair or over our semi-naked bodies, or see this being done to us, did make us reflect on the dynamism of power relations in the research process as we were no longer detached observer-researchers. . . . The usual distance and hierarchy between the researcher and the researched, which often persists despite our best efforts, was changed and narrowed in the later interviews, enabling easier research connections to form and discussions on the intimacies/ uncertainties of touch in body-training.  (2017, 6)

Ostensibly, negotiating one’s own positionalities goes beyond the routine of being reflexive of one’s demographic and social positions. These positions include such given attributes as nationality, race, and gender, as well as biographical experiences (Turner and Norwood  2013). Such reflexivity must also engage with unseen or not readily upfront characteristics that importantly feature sensory behavior and emotional states of mind. Additionally, how respondents relate to these attributes is addressed in the current chapter through analyses of qualitative data after the fieldwork phase. Through the course of their research, the authors of this chapter had to moderate their own sense of gender and emotional subjectivities. Such moderation transpired in ways that were more similar than different from respondents. In other words, the researchers’ bodies and sensorial faculties were clearly part of the research and analytical processes. The position on subjectivity as relayed in this chapter is congruent with Pink’s (2009) delineation of two concepts related to sensory knowing and strategies. The first, “sensory subjectivity,” relates to how researchers reflect upon their own role or positioning in the course of producing ethnographic work. How fieldworkers employ the senses in terms of both knowledge and practice is conceived as a “form of subjectivity.” This form consists of comprehending the world through a culturally specific lens, which is shaped in relation to other identity markers, including ethnicity, gender, sexuality, and age (Pink 2009, 53). One’s self-identity therefore becomes continuously reconstituted vis-à-vis embodied ways of knowing. The second, which Pink calls “sensory intersubjectivity,” has to do with how one’s researcher identity undergoes constant negotiation based on intersubjective ties with social actors. Such negotiation importantly includes the sensory and material environment. Deploying these two concepts of subjectivity, this chapter is thus consonant with the theoretical and methodological concerns of recent scholarship on the body, the senses, and qualitative studies. In reflecting upon their own bodily and sensory experiences in ethnographic research, the authors draw attention to ontological episodes where how their bodies behave, are presented, and respond to different research contexts that overlay the sociocultural phenomena that the authors examine.

56   Kelvin E. Y. Low and Noorman Abdullah

Sensory Encounter I—“Sensing Race” The first sensory encounter engages with Abdullah’s (2011) work. He scrutinized how Malay practitioners in Singapore and Malaysia perceived misfortune as an outcome of supernatural agency. He interrogated how they meaningfully managed and negotiated their ethnic and religious identities during episodes of spirit affliction and their pursuit for relief from such distress. The phenomenon of spirit affliction is connected intimately with the emotions, perceptions, sensorial feedback, and feelings of individuals and their extended kin. Throughout the research process, he relied upon different methods to gather data. His study was primarily based on ethnographic fieldwork, informal conversations, and in-depth narrative interviews. Abdullah’s own biographical history and professional location in Singapore influenced his eventual choice of studying spirit possession among Malays and selecting Singapore as a field site. Despite the familiarity and knowledge a researcher has in relation to the social context and the field languages spoken, many scholars have reported problems studying their own societies (Dragadze 1987; Greenhouse 1985; Kang 2000; Kondo 1990). They describe such experiences as having “to learn another language in the words of [their] mother tongue” (Okely 1984, 5). The ethnographer in her “own” society must therefore first rediscover the “strangeness” of “[t]he adventure [that] begins just around the corner” (Honer 2004, 114). This is to avoid the problems associated with total immersion or “going native.” In Abdullah’s case, this included learning and reappraising different bodily and sensory scripts and knowledge. Abdullah was born into a multireligious and multiethnic household with a migrant historical background. He later converted from Roman Catholicism into his Malay mother’s religion, Islam, at a relatively young age in Singapore after his Chinese father and Malay mother divorced. His kinship relations included Christian, Muslim, Buddhist, Taoist, and Jewish aunts, uncles, and cousins. However, merely speaking the same language, sharing similar histories, and believing the same religious faith did not translate into “sameness.” There were numerous social encounters during fieldwork that positioned Abdullah both as a “stranger” and “insider,” thereby highlighting the complexity of ways of belonging and distance in the field. This ambivalent experience of being situated both “inside” and “outside” partly reflects the tensions of simultaneously belonging and not belonging. On several occasions, Abdullah was regarded as not “fully” Malay, particularly in regard to his perceived incompetence of “doing Malay” or demonstrating competent “Malay knowledge.” These included how others read his body, gestures, and sensory knowhow. In this respect, he was often positioned by others in the field as “campuran” (mixed), “kacukan” (hybrid), “setengah Melayu” (halfMalay), or “halfie,” to borrow Abu-Lughod’s (1991) term. Therefore, he needed to make sense of the boundaries that marked him off as being both “Malay” and yet also a particular sort of “Malay.” This was because he had initially assumed that a somewhat “similar” ethnic and religious background would help enhance his relations with research participants intersubjectively.

Sensory Experience as Method   57 In many of these social encounters in the field, Abdullah’s respondents—whether they were those afflicted with spirit incursions, spirit mediums, or religious scholars— often invoked and foregrounded various threads of his entangled, multiplex identities. These strands could both draw him closer to his respondents or thrust him further apart from them. The extent of rapport depended on the context of interaction and the different bodily and sensory knowledge he was familiar with. Correspondingly, certain facets of his racial identity have also been de-emphasized in the field. During these episodes, he clearly felt uncomfortable and at times even apologetic. These aspects had been underscored by his respondents, particularly in situations of bodily, gestural, and sensory gaffes, which included his visual, aural, and olfactive know-how within the Malay community. His experience of discomfort and awkwardness is illustrated through the following sample from his field notes: We were all seated on the floor in the living room. Two elderly men were at the corner of one end of the room, discussing very intently the case of Nurul’s affliction. I wanted to hear what they were discussing about more clearly, so I stood up and crossed over the outstretched legs of the person next to me and proceeded to sit next to the two elderly men. Later, I was pulled aside by one of the older men who reminded me gently: “Have you not learnt your manners? You just can’t cross over a person’s legs like that, what more an elderly man like him? It’s not polite. At the very least, you should have also slightly arched your back while walking past people already seated. . . . I thought you would have known this as a Malay, as a mark of respect . . .” I then suddenly recalled the incident, and knew my gaffe immediately. At that moment, because I was so excited to hear what the two men had to say, I forgot this and felt really embarrassed after that. I apologized profusely and never have I forgotten to slightly arch my back while walking past elders after this incident.

The episode described earlier shows how Abdullah was expected to know how to behave appropriately through the use of his body. During his interaction with the two elderly respondents, they delineated to him the expectations for social behavior according to Malay conventional norms. In other encounters during his fieldwork, several respondents have similarly expressed appropriate sensory behavior that he was expected to know and adopt. While attending a funeral, I was suddenly so overwhelmed that I cried loudly, but was nevertheless admonished by the rest: “Don’t cry! You can’t cry or the body can’t leave in peace. And you cried so loud! This is inappropriate. God has taken her away. We can’t do anything about it but accept that fate, and she’s gone to a better place.” At the very most, you should do it quietly. It was around the time of Maghrib (sunset) and I distinctly noticed a strong fragrant odor. I remarked on this scent to Rosmah and Sumiati if they had smelled this as well. Both of them immediately rebuked me for mentioning this and told me to remain quiet. I was confused and asked them why, but they refused to let me know there and then. It was only the very next morning when Rosmah chided me that

58   Kelvin E. Y. Low and Noorman Abdullah I should have known that I should not have commented about such scents at night since this was indicative of the presence of malevolent spirits and that such spirits would feel threatened by the acknowledgment of their presence when one remarks on these scents. She expressed how surprised she was that I did not know such knowledge as a Malay.

In these short bodily and sensory encounters reflected in his field notes, Abdullah could not fully comprehend and appreciate these Malay practices, and bodily and sensory subjectivities, such as aural and olfactive sensibilities. He had forgotten important sensory cues: that it was impolite to cry loudly or to express emotions openly in public, as well as to comment on scents that were construed as “dangerous.” At the same time, his ethnic “Chinese” background was often accentuated. This was sometimes read favorably, but at other times disapprovingly. A brief portion of Abdullah’s field notes detailing a conversation between two middle-aged women respondents illustrates this point: I was sitting in the living room on the floor with a group of Mirna’s relatives, some of whom I did not know, while waiting for the spirit medium to arrive to check on Mirna’s deteriorating condition. The air in the room was still and the discomfort in the room was palpably stifling, though there were murmurs around speculating the possible outcomes of the upcoming healing session. One of these was a conversation in Malay between Haziaton, whom I was sitting beside, and her elder sister, Jumilah: jumilah:  (whispers) Eh, who is that budak Cina (Chinese boy) next to you? He can speak Malay ah? haziaton:  Chinese boy? Ohhh . . . don’t you know him? He’s Noorman lah. The one I told you about before you came here. Not Chinese boy, our boy lah. Jumilah:  Oh . . . that’s why I thought who this Chinese boy is. He looks and also sounds Chinese. That was why I was confused. Abdullah:  Yes, my parents are from different ethnic groups. My father is Chinese and my mum is Malay, but I am Muslim and even though my racial group as reflected on my identity card is Chinese, this is because, as you know, the government only recognizes my father’s race which determines my racial group.

In the preceding interaction, Jumilah drew attention to his visual physical and aural features. In his encounters with other respondents, they also made reference to his purportedly small “Chinese” eyes (mata Cina) and “flat” nose (hidung pesek), as well as his accented voice when he spoke to them in Malay. At the same time, his oral Malay was admittedly not excellent, according to his respondents. He could easily converse with them, but this was often perceived by his respondents as heavily accented. These aural inflections could easily be captured as “nonnative.” In many of Abdullah’s initial conversations that he had with his respondents in Malay, they often positioned him as a Chinese from neighboring Malaysia or Indonesia, given their ability to converse in the Malay language. Abdullah therefore had to explain his background to those who did not know him well, or even among those to whom he was introduced by distant relations such as in the case of Haziaton and Jumilah earlier.

Sensory Experience as Method   59 These brief fieldwork vignettes are not intended to suggest that ethnographers in other settings and studying other social phenomenon do not experience similar encounters in the field. These encounters also include sensory knowledge within the community they are ostensibly “part of ” and “native to.” Given the heterogeneity of any society and the multiplicity of social boundaries and group memberships erected, individuals can belong and not belong to different social categories and groups. In both professional and personal contexts, there is often a misplaced notion that an ostensibly “native” researcher will command a priori “insider” bodily and sensory knowledge such as sight, olfaction, and aurality. As such, she may be more easily accepted in the field, given that she has a more nuanced perspective regarding the context, as compared to other ethnographers. Scholars also suggest that this concept of “native” and the data she collects are typically charged with notions of “authenticity” (Appadurai 1988, 37) or “authority” (Kang 2000, 45). This, we contend, also includes different corporeal and sensory experiences and knowledge that we bring to the field and how these reconfigure social relations. A “native” social researcher is thus assumed to be an “insider” who will forward an “authentic” point of view of her respondents intersubjectively. There is likewise an assumption that the “native” researcher’s familiarity with her “insider” context would affect her objectivity in observing and perceiving the settings in which she is located. This could inadvertently affect her research findings and observations. However, as demonstrated through Abdullah’s brief fieldwork encounters, the positions of “insider” and “outsider” are not as clear-cut as they are made out to be. This also includes the everyday, banal sensory sensibilities taken for granted by the community such as sight, sound, and olfaction. Moreover, the contention that respondents may position “native” researchers as “one of them” at certain times, and not at other times, generally means that higher expectations and obligations may be placed on their social performances and knowledge. They may correspondingly not profit from the allowances made to other “outsider” researchers. Given the diversity within cultural domains and across groups, even the most experienced of social researchers cannot know everything about her own society, or any society for that matter. In this regard, using the case of differential sensory and bodily knowledge in the field, the act of researching one’s “own” society thus imposes various impediments and problems. However, these are often negotiated in the field and are more complex than a straightforward dichotomy of “insider” and “outsider.”

Sensory Encounter II— “Sensing Gender” The second sensory encounter involves Low’s work (2009), theoretically informed through the sociology of everyday life. It focused on the sociocultural significance of smell in historical and contemporary Singapore that included unpacking gendered

60   Kelvin E. Y. Low and Noorman Abdullah meanings associated with olfaction. Low attempted to explain how respondents deployed smells as an intermediary through which social actors are delineated using social categories as “masculine” and “feminine.” These categories were occasionally coupled with other associated categories of sexuality—heterosexuality, homosexuality, and bisexuality. In other words, respondents constructed their own varied olfactive configurations of sex, gender, and sexuality “with smell as a medium of sensorial recognition and placement” (Low 2009, 85). Breaching experiments were carried out to problematize and unpack how everyday practices (Garfinkel 1967) of gender were accomplished, in addition to the conduct of narrative interviews. Low’s sensory body was therefore employed both as a research tool and elicitor of responses. The approach was based on breaching experiments employed under the framework of ethnomethodology (Garfinkel 1967). Breaching dichotomous gender norms meant transgressing socially “acceptable” gender behavior. This was not without a good measure of embodied reflexivity on the part of both himself and his respondents. Low wore fragrances that were marketed for female consumers as a target group. He wanted to test whether these smells would engender reactions from his respondents. He then asked respondents what they thought of the fragrance. A combination of both physical and conversational breaches were undertaken, beginning first with Low’s body that had been presented as emitting “feminine” scents. This was followed by Low probing respondents further if, where, and how they ascribe gendered qualities to olfaction. Most respondents held polarized views on gender and scents: “Masculine scent should be strong . . . it should give the user a feeling of confidence and charm . . . in contrast, a feminine scent should be gentle in nature. . . . It probably fits in with society’s image of what an ideal man and woman should be . . . ”; “I’m strongly against male applying female fragrance or vice versa” and “I would definitely not wear a fragrance marketed for men. . . . As a woman, I wear things intended for women. . . . Would you wear scents marketed for women? If so, good luck to you” (Low 2009, 115–116, emphasis in original). There were others, however, who were equally critical of the dichotomy: “If a [female] friend can get away with wearing a male perfume and smell nice, I don’t see what’s wrong” and “I would say a nonsensical need to differentiate men and women based on smell because you have scents that define femininity and particular smells that represent masculinity . . . I think these smells are in the first place learnt. . . . You just need marketing agencies to do that . . .” (Low 2009, 118). Where some of these interlocutors were categorically associating gendered values with scent, others criticized such forms of gender essentialism as well. How Low’s respondents sensorially experienced and rationalized gender subjectivities, related to, or resisted gendered norms of behavior were also issues that he confronted as a researcher. How Low olfactorily experienced his own gender identity as a male researcher, depending on the scents that he deliberately put on before meeting respondents, conjointly become embroiled in the ways through which respondents sensed him. Low failed in his first attempt to elicit responses, as he was hesitant to smell “feminine” himself and thus applied a modicum amount. In subsequent attempts, he put on greater doses of perfumes. In effect, Low was repositioning himself in embodied terms

Sensory Experience as Method   61 with gendered norms in mind, and how to transgress them more explicitly. He was ­recalibrating his body and its sensory properties in order to prepare it in later attempts as a methodological instrument of data collection. By deliberately applying copious amounts of fragrances marketed for female consumers in round two, Low wanted to find out if such bodily transgression might elicit reactions from respondents with regard to olfactory evaluations of gender norms and behavior. When one of his female respondents queried if he had been wearing a new perfume, Low asked what she thought of it. She responded by saying: “How come it smells so sweet and fruity? Erm . . . (she falters for a while) . . . I don’t think it really suits you. . . . Maybe you shouldn’t wear it.” He then prodded her by querying what in her view would suit him as a male person, to which she replied: Well, what you are wearing now is perhaps more . . . erm . . . suitable for females, since so sweet and fruity. Guys should wear something musky, like tobacco? Kinda funny to smell that off of you, because it seems out of place. Just like how men can’t wear skirts . . . must be strong not weak. Or . . . like . . . pork roast smells nice by itself but not on a person . . . not appropriate.  (Low 2009, 116)

Her response reflects a tacit understanding of gendered norms that translates into how male and female scents are regarded. Low’s sensory demeanor brought forth responses from those whom he studied. These responses thereby made it pertinent first to be aware of how his own sensory experiences were also harnessed as a method in exploring scents through the lens of gender. As much as he was interested in unraveling the sociocultural meanings of smell in everyday life, he was also a part of the sensory landscape in this research context. Being aware of discourses surrounding gendered mores and norms meant that Low was subjected to these accompanying notions of “masculine” and “feminine” scents and traits. In addition, and given his election of employing sensory breaching experiments as a method, Low had to first prepare his body before a research setting. This is similar to his respondents, who shared their daily olfactory routines before stepping out of the house. What would be appropriate smells that ought to emanate from him as a male person? How could he then elicit responses using breaching experiments if he had at first not breached gender norms and olfaction? These were the questions—related to Low’s own sensory subjectivity (Pink  2009)—that weighed on his mind. He had to first address these concerns before presenting his own body in front of respondents. Such awareness elucidates a reminder that sociocultural discourses construct the body and are “worked through the materiality of the body” (Wainwright, Marandet, and Rizvi 2018, 286). Preparing his body in olfactory ways before conducting fieldwork, as well as calibrating his embodied behavior during research, was therefore crucial in employing sensory experiences as a method and in acknowledging bodily co-presence. Reflecting upon one’s own sensory experiences produced before and during research encounters illustrates sensory intersubjectivity, which is crucial work required in producing a sensory ethnography. Pink elaborates (2009, 50):

62   Kelvin E. Y. Low and Noorman Abdullah It is a collaborative process through which shared understandings (to the extent that they can be shared) are produced. . . . The self-conscious and reflexive use of the senses in this process is an important and strategic act. By attempting to become similarly situated to one’s research participants and by attending to the bodily sensations and culturally specific sensory categories . . . through which these feelings are communicated and given value, ethnographers can come to know other people’s lives in ways that are particularly intense.

In so doing, researchers as gendered, ethnicized, and moral beings are also deeply involved in presentations of self, and they, in turn, study respondents’ presentations from the onset. Researchers’ presentation of self, as in Low’s case here, corresponds broadly to Wacquant’s (2015) notion of enactive ethnography where fieldwork comprises researchers who also perform the phenomenon under study. The difference, however, is that Low performed in the opposite direction on the basis of deploying breaching experiments as an ethnomethodological undertaking. His approach and results of breaching are consonant with the work of Wainwright, Marandet, and Rizvi (2018), in which their bodies became guinea pigs in the course of research. The researcher’s body in both studies adopted simultaneously the roles of subject and object in embodied fieldwork that clearly evidences corporeal intersubjectivity and the body as knowing.

Sensory Encounter III— “Sensing Heritage” The third and final sensory encounter pertains to Low’s recent work on heritage. If the researcher’s body is affected in fieldwork settings in all its physicality and sensorial materiality, the present sensory encounter extends such embodied presence alongside discursive textuality. Low (2017) examined how the senses operate in producing everyday heritage in Singapore, framed through actor network theory. By studying heritage trails vis-à-vis content analysis of trail brochures, media reports, and trail walkabouts, Low made a case for how such trails provided an avenue for users to engage with the past in embodied and sensory ways. He participated in heritage trail walkabouts with both locals and tourists, and also interviewed them to comprehend their experiences as her­it­ age consumers. This approach is commensurate with the idea that walking as method offers possibilities to examine “spatialized, lived, sensually experienced deviations” from distant and abstract historical narration (Aoki and Yoshimizu 2015, 274). Heritage trails in Singapore are marked out both by the National Heritage Board (NHB) as well as members of the public. These trails present a combination of sensory encounters and personal biographies, and global events and collective histories. Buildings, shop houses, and various other historically important locales are denoted as important heritage outfits of such trails, accompanied by narratives and accounts of the past recorded in trail brochures. Collectively, they are sites that reflect upon how

Sensory Experience as Method   63 ­ er­it­age production is an amalgamation of both “grand narratives and localized experih ences that together lend more nuanced meanings and draw further on embodied ­experiences of heritage and history” (Low 2017, 286). As an example, the NHB officially launched its Queenstown heritage trail in 2007. The significance of Queenstown lies in it being the very first satellite estate where the Housing Development Board built the first government flats in the 1950s. Responses to the trail, however, were not favorable, as many landmarks and memories which were of significance to residents were not included. A civic group called “My Community” later came up with five heritage trails in the estate that comprised the personal recollections of numerous Queenstown residents. This is an example of how residents’ mobilization of memories remedies the displacement of aspects of the past by official heritage choreography that mattered more intimately and meaningfully to them. We contend that language and text are important resources through which sensory encounters and experiences can be articulated and/or analyzed (Low  2015; cf. Waitt 2014). Where such texts include a whole spectrum ranging from memoirs, newspaper articles (Montanari 2017), and poetry (Waskul and Van der Riet 2002) to letters, religious texts, and travel diaries, Low added brochures as another text form to this inventory. He explicated how heritage is recorded through sensory reflections and nostalgic recollections for heritage trail participants. These trails, he noted, were “invested with sensory cues that conjure the past, textured with individual stories and experiences that have transpired on site” (Low 2017, 276). While walking on such trails, participants concurrently referred to these brochures wherein narratives of the past have been documented. Low’s sensory co-participation with trail participants is one of the now more commonly employed sensory methods in urban qualitative research. These methods include smell walks (Low  2009), sound walks (Butler  2006), or participant walkthroughs (Imai  2010), among others. Such sensory walkabouts reflect upon sensory intersubjectivity (Pink 2009) in that experiences of place, and in the present encounter, embodied heritage, are co-produced between the researcher and participants. Researchers “get into the experience of the participants and see it as they see it” (Grosz 1998, 47). Furthermore, we return to the issue of power in the researcher–researched relationship in that sensory methodologies of walking come in multiple forms. The researcher may do the walk on her own, together with her research participants, or along with family or friends (Low 2015). Differentiating these forms is imperative as researchers and their respondents may, through direct participation, constitute “copresent interlocutor[s]” (Crang 2003, 499) and thereby reconfigure positionalities in the field. Such co-presence or co-research process translates the researcher and her body as active participants beyond detached observation. In their walking tours conducted in Japan and Canada on sex work, Aoki and Yoshimuzu (2015, 274) note that their multiple subjectivities as “mother, lover, friend, student, researcher, writer, are with [them] in the field and intervene in [their] research.” Walking as methodology avails a more critical engagement with urban space vis-à-vis embodied and sensory experiences. It offers embodied ways of comprehending how social actors relate to place and history,

64   Kelvin E. Y. Low and Noorman Abdullah i­ncluding how their bodily movements and recollections conjunctionally imagine and materialize space (Aoki and Yoshimuzu 2015). An example of how heritage trails form depositories of both official and grassroots commemoration is drawn from the Jalan Besar Community Trail. The trail provides a depiction of the history of Jalan Besar, which literally means “big or wide road” in Malay. This is one of the first roads built in Singapore, which cut through a fruit orchard and a betel nut plantation. Owners of the land bought it from the British East India Company in the 1830s (Jalan Besar Community Trail Brochure, NHB and URA 2006). The trail brochure also focused attention on sports—a stadium in the area that has become an important landmark is noted: To most Singaporeans, Jalan Besar is synonymous with the Jalan Besar Stadium, a landmark in the area for almost a century. It was here that many an exciting soccer match was played and a place that also bonded Singaporeans through sports.

Trail participants shared with Low their vivid memories of the stadium. They found it to be “such a nostalgic place where [they] all used to go watch matches and cheer together.” Another participant articulated the following sensory recollection: “I can recall the excited atmosphere . . . cheering, shouting and booing at those soccer matches. . . . I think it was one of the Malaysia Cup of . . . where we were all supporting our favorite team that was playing, taking in all the noise, heat and excitement . . . ” (Low 2017, 287–288). Here the shared sensory experiences of soccer fans reflect how the sport serves as a social glue to bond people together. This response illustrates how the senses serve as an intermediary toward reliving the past through embodied socialities. Built in 1932, the stadium was where the Malaya Cup (1932–1966) and later the Malaysia Cup (1967–1973) were held before soccer matches were moved over to the National Stadium. Apart from personal narratives provided by trail participants, the brochure also raised similar embodied experiences: If you were to take a closer look at the older trees along King George’s Avenue, you will find wooden structures and planks on top of the trees used by children of the area as spectator benches to watch the football matches going on in the stadium. (Jalan Besar Community Trail Brochure 2006)

Drawing attention to both visual and material evidence of the past—comprising wooden structures and planks—promotes visceral familiarity highlighted in such her­it­ age trails. Trail walkabouts, furnished by an array of embodied and sensory information provided in trail brochures, prompt both the researcher and researched (trail participants) to actively engage in intersubjective walking. Embodied and sensorial experiences of the past are either corroborated through personal narratives or visually “checked” while venturing on such trails—some participants were keeping a lookout for spectator fixtures on those trees. Another example of sensory and embodied corroboration of trail walks and brochure presentation is seen through the following account of gastronomical heritage. Food

Sensory Experience as Method   65 ­ istory has been documented in the Jalan Besar trail brochure, promoted as must-trys h for trail participants. One such example is “Swee Choon Dim Sum,” located at 191 Jalan Besar, which is well known for its “fresh and handmade bao (bun) as well as the back lane dining experience” (Trail brochure, 2006). Visitors are prompted to try the restaurant’s “big meat bao which is a Chinese bun filled with minced pork, a piece of chicken, egg and half a shitake mushroom” (Trail brochure, 2006). Low quote at length some participants’ responses to such culinary promotion, after having eaten at this establishment: Some local trail participants followed the trail brochure and ate at this restaurant, remarking that “the taste hasn’t changed,” egging me to try one so that I could also relive the past through eating. As one of them said to me afterwards: “I have eaten at this restaurant for a long time . . . the tastes and smells of their food hasn’t changed a bit . . . my family used to dine here a lot when we were younger and I will always remember how delicious and moist the bun is . . . my father also used to buy those home from time to time.  (Low 2017, 289–290)

This quote illustrates how the participant still remembers the unchanging tastes and smells of the particular restaurant’s food, connecting such sensory fondness to familial experiences. Food heritage, family life, and embodied experiences intersect through sensory recollections of the past. At this point, one ought to note also that experiences such as the ones reflected here would differ, depending on the trail participants’ background, be they locals or foreign visitors. For each group, their ways of experiencing gastronomic heritage comprised either a reliving of the past or a taste testing of the present as invited by the brochure. For the former, food histories that encompassed family relations, identity, and commensality were vivified through such sensory encounters of eating so that gastronomic memories resonated more poignantly with this group of trail participants. Verifying the authenticity of such foods arose from both textual (brochure) and lived (familial) experiences. For the latter group who were foreigners visiting the country, some remarked that the brochure has piqued their curiosity when they followed the food recommendations. Others were keen to check if the smells and tastes of local food lived up to its promise as invocated in the brochure. In these respects, heritage wielded contrasting purposes for its different consumers. More pertinently, different bodies and sensory biographies extemporized heritage in multivalent ways. A collocation of sensorial and embodied experiences here reflects upon how the body and senses are conduits in the production and consumption of heritage. Social actors agentically harnessed their bodily and sensory knowledge toward receiving and producing heritage in their own terms. Sensing heritage conjoined both official and bottom-up levels of recollecting the past in relevant and meaningful ways. Such recollections are facilitated by varied embodied and contextual viscerality through brochure texts and trail walks. Some measure of agency may therefore be exercised by social actors toward responding to both historiographical inclusions and exclusions.

66   Kelvin E. Y. Low and Noorman Abdullah

Conclusion—Sensing Research Sensory experience as method produces “sensible knowledge” in that it encompasses “what is perceived through the senses, judged through the senses, and produced and reproduced through the senses.” Furthermore, sensory experience also “generates dialectical relations with action and close relations with the emotions” of social actors (Strati 2007, 62). In other words, the senses serve as crucial intermediaries in the course of research and data generation. In the process, researchers and interlocutors are intersubjectively connected through different configurations of sociality. The approach to sensible knowledge is anchored upon Simmel’s (1908; cited in Strati 2007) contention that we perceive our fellow interlocutors through sensory lens comprising both appreciation and comprehension. Engaging with our own bodies and senses over the course of fieldwork means opening up further possibilities toward providing embodied insights of social phenomena that we study. By exercising sensory intelligence—where all of our senses are mobilized in reflexive and skillful ways to develop sensuous scholarship in appreciation of one’s own and others’ senses (Vannini, Waskul, and Gottschalk 2012)— the initially unfamiliar social life that researchers, at first as sideline observers (Contreras 2015), study may potentially become more familiar as a result of doing what respondents do. Such familiarity, in turn, ought to inform and further meliorate the research questions, theoretical framing, and analytical directions that are subsequently undertaken (Contreras 2015). If the goal of ethnographic research, among others, is to uncover how social structure and individual and collective identities are influenced and shaped by embodied and sensory knowledge and practices, researchers who begin from the body “do not assume the uniformity of either the body or epistemic experience” (Pitts-Taylor 2015, 23). More pertinently, embodied insights, when appropriately yoked to reflexivity, unveil heterogeneous ways of knowing through the body and the senses. Such heterogeneity can clearly cut across not only the three domains of social inquiry that have been presented herein. It potentially encompasses a broad range of issues, themes, and social categories that form the nuts and bolts of everyday life and lived experiences of embodiment. Learning to know, perceive, and orientate one’s lifeworld through the lens of the body and the senses would mean privileging sensory-bodily analysis. Such approaches aim at improving social scientific inquiry engaged through the body of both the researcher and respondents.

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68   Kelvin E. Y. Low and Noorman Abdullah Low, Kelvin E. Y. 2013b. “Sensing Cities: The Politics of Migrant Sensescapes.” Social Identities: Journal for the Study of Race, Nation, and Culture 19, no. 2: 221–237. Low, Kelvin E. Y. 2015. “The Sensuous City: Sensory Methodologies in Urban Ethnographic Research.” Ethnography 16, no. 3: 295–312. Low, Kelvin E. Y. 2017. “Concrete Memories and Sensory Pasts: Everyday Heritage and the Politics of Nationhood.” Pacific Affairs 90, no. 2: 275–295. Merleau-Ponty, Maurice. [1945] 2012. Phenomenology of Perception. London: Routledge. Montanari, Andrea. 2017. “The Stinky King: Western Attitudes toward the Durian in Colonial Southeast Asia.” Food, Culture & Society 20, no. 3: 395–414. Okely, Judith. 1984. “Fieldwork in the Home Countries.” Royal Anthropological Institute Newsletter (RAIN) 61: 4–6. Pink, Sarah. 2009. Doing Sensory Ethnography. London: Sage. Pitts-Taylor, Victoria. 2015. “A Feminist Carnal Sociology? Embodiment in Sociology, Feminism, and Naturalized Philosophy.” Qualitative Inquiry 38: 19–25. Plourde, Lorraine. 2017. “Sonic Air-Conditioning: Muzak as Affect Management for Office Workers in Japan.” The Senses and Society 12, no. 1: 18–34. Sandelowski, Margarete  J. 2002. “Re-embodying Qualitative Inquiry.” Qualitative Health Research 12: 104–115. Stevenson, Andrew. 2017. “Arrival Stories: Using Participatory, Embodied, Sensory Ethnography to Explore the Making of an English City for Newly Arrived International Students.” Journal of Contemporary Ethnography 46, no. 5: 544–572. Strati, Antonio. 2007. “Sensible Knowledge and Practice-Based Learning.” Management Learning 38, no. 1: 61–77. Turner, Paaige K., and Kristen M. Norwood. 2013. “Body of Research: Impetus, Instrument, and Impediment.” Qualitative Inquiry 9, no. 9: 696–711. Vannini, Phillip. 2017. “Making Sense of the Primal Scream: Sensory Peak Performance and the Affective Drama of Athletic Competitions.” In Seeking the Senses in Physical Culture, edited by Andrew C. Sparkes, 25–41. London: Routledge. Vannini, Phillip, Dennis Waskul, and Simon Gottschalk. 2012. The Senses in Self, Society, and Culture. New York: Routledge. Wacquant, Loic. 2004. Body and Soul: Ethnographic Notebooks of an Apprentice-boxer. New York: Oxford University Press. Wacquant, Loic. 2015. “For a Sociology of Flesh and Blood.” Qualitative Sociology 38: 1–11. Wainwright, Emma, Elodie Marandet, and Sadaf Rizvi. 2018. “The Body-Space Relations of Research(ed) on Bodies: The Experiences of Becoming Participant Researchers.” Area no. 2: 283–290. Waitt, Gordon. 2014. “Bodies That Sweat: The Affective Responses of Young Women in Wollongong, New South Wales, Australia.” Gender, Place & Culture 21, no. 6: 666–682. Waskul, Dennis, and P.  Van der Riet. 2002. “The Abject Embodiment of Cancer Patients: Dignity, Selfhood, and the Grotesque Body.” Symbolic Interactionism 25: 487–513.

chapter 5

M i x ed M ethods i n Body a n d Em bodi m en t R esea rch Samantha Kwan and Trenton M. Haltom

The blurring of the quantitative-qualitative divide is a unique feature of twenty-firstcentury research (Denzin and Lincoln 2018). A distinct third methodological movement or paradigm—mixed methods—now brings together both qualitative and quantitative research (Johnson and Onwuegbuzie 2004; Tashakkori and Teddlie 2010). While rates of published work using mixed methods vary across disciplines (Alise and Teddlie 2010), researchers have documented a steady increase in mixed methods publications (Ivankova and Kawamura 2010). A push from funding agencies, evaluators, and other stakeholders to use mixed methods to explore social policies may account for their increased use (Hesse-Biber 2014). Researchers who use mixed methods ostensibly do so because of their value. A core assumption is that it increases the credibility of research because “the weaknesses in each single method will be compensated by the counter-balancing strengths of another” (Jick 1979, 604). Methodologists point out that quantitative research is weak in understanding context and setting, as well as giving voice to participants—purported strengths of qualitative research (Creswell and Plano Clark 2011). At the same time, they express concerns that qualitative research is interpretive and has small ­nonprobability samples that lead to ungeneralizable findings—purported shortcomings quantitative research (based on probability sampling) addresses (Creswell and Plano Clark 2011). The use of mixed methods thus allows researchers to offset weaknesses, leading to results that provide a better understanding of a research problem (Plano Clark and Ivankova 2016). As such, it can serve as an important tool for body scholars, especially those attuned to a multiplicative understanding of embodied experiences. In this chapter, we share the basic concepts associated with mixed methods research. We hope this primer will assist scholars in determining the value of mixed methods for

70   Samantha Kwan and Trenton M. Haltom their own projects. We begin with a brief history and how leading methodologists ­conceptualize this term. To illustrate mixed methods in practice, including its benefits, drawbacks, and relevance to intersectionality research, we turn to the first author’s research on body weight (Kwan 2007, 2009a, 2009b, 2010; Kwan and Graves 2013). We then consider two additional studies that examine social processes related to the body and employ mixed methods—England and colleagues’ (2016) study on young women’s contraceptive use, and Weinberg and Williams’s (2010) study on nude embodiment. We select these cases to illustrate further the range of applications of mixed methods research. We conclude that, while mixed methods research comes in different forms, this research exhibits a common goal. On the one hand, researchers use quantitative methods to document specific statistical, including causal or correlational, trends in a population. On the other hand, they use qualitative methods to illuminate multidimensional social experiences and to show linkages in social processes. Investigating how various social categories intersect simultaneously to shape identity and experiences of the body demands qualitative methods. Thus, if researchers of the body desire to describe embodiment-related characteristics in a population, as well as thoroughly understand lived experiences of embodiment, then mixed methods would serve them well.

A Brief History Methodological paradigm wars began around the 1980s (Teddlie and Tashakkori 2003). Critical theorists, among others, began to attack the objectivity-driven positivism paradigm (Gage 1989; Johnson and Onwuegbuzie 2004) that dominated the methodological landscape of the social sciences since the 1930s (Crothers and Platt 2010). It was about this time that qualitative approaches grew in popularity (Meriam and Tisdell 2016). The emergence of grounded theory (see Glaser and Strauss 1967) also provided a new epistemological foundation for qualitative research. While purists on both sides of the quantitative-qualitative divide espoused the incompatibility thesis—that is, that the two paradigms are so philosophically, epistemologically, and methodologically different they should not be blended—advocates of the third paradigm were more flexible, maintaining both approaches are useful to social inquiry (Howe 1988; Johnson and Onwuegbuzie 2004). Interestingly, some argue that what might be labeled mixed methods research today has occurred for almost a century. For example, in the 1920s, Chicago School case studies of inner-city urban life involved both qualitative and quantitative methods (see Hesse-Biber  2014). Pelto (2015) contends that this early research was not labeled mixed methods because the quantitative-qualitative divide was “generally not significant or special. They were all doing ‘science’ ” (741).

Mixed Methods in Body and Embodiment Research   71

Conceptualizing Mixed Methods Today researchers use a number of terms to describe studies characteristic of this third methodological movement, including blended research, integrative research, multimethods, and mixed research. The oft-cited term triangulation refers to “the combination of methodologies in the study of the same phenomenon” (Denzin 1978, 291). According to Denzin (1978), triangulation can occur within-methods, when a researcher uses multiple techniques that are either quantitative or qualitative to collect and interpret data. In contrast, between-method triangulation uses both quantitative and qualitative methods. However, the literature indicates strong agreement that mixed methods contains both quantitative and qualitative elements (Johnson, Onwuegbuzie, and Turner 2007). Hence, “mixed methods” typically refers to between-method rather than within-methods blending; the latter is often termed “multimethods” or “multiple methods.” Conceptualizations of mixed methods research further differentiate the extent to which a study has more quantitative or qualitative leanings. Mixed methods research can be categorized along a continuum (Johnson et al. 2007). At the two poles are Pure Qualitative and Pure Quantitative, with Pure Mixed as a midway point. Between Pure Qualitative and Pure Mixed lies Qualitative Mixed (qualitative dominant), and between Pure Mixed and Pure Quantitative lies Quantitative Mixed (quantitative dominant). Notably, much body scholarship that involves more than one method would be labeled multimethods and qualitative dominant. This is likely because sociologists in this subfield often endeavor to capture the rich and multifaceted elements of lived embodiment. This goal necessarily involves qualitative methods such as participant observation in a natural setting or in-depth qualitative interviews to capture life narratives. To be sure, there are many examples of multisited ethnographies, along with studies that blend participant observations, interviews, and qualitative analysis of text. These include Casper and Moore’s (2009) study of missing bodies, Han’s research (2015) on gay Asian men, Talley’s (2014) research on facial cosmetic surgery, and Whitesel’s (2014) research on fat gay men. Here, researchers’ use of multiple qualitative methods, as well as secondary statistical data, enables them to paint a vivid picture of embodied lives. Another consideration is when or how mixing occurs. Creswell (2015) identifies three basic mixed methods designs that acknowledge research purpose, as well as the timing of mixing. In a convergent design, a researcher collects and analyzes quantitative and qualitative data and then merges the results with the purpose of comparison. In contrast, sequential designs exhibit more clearly distinct phases. In an explanatory sequential design a researcher begins with quantitative methods and then turns to qualitative methods to help explain in greater depth the quantitative results. In an exploratory sequential design, a researcher first explores a little understood problem with qualitative methods. They then use these findings to design a second quantitative phase, which is then implemented in a third data collection and analysis phase (Creswell 2015).

72   Samantha Kwan and Trenton M. Haltom For example, in the work we examine more closely in this chapter, Weinberg and Williams’s (2010) wave-one research phase involves the collection of closed and openended data, thereby exhibiting characteristics of a convergent design. Kwan’s (2007) use of qualitative interviews in part to make sense of survey data among a population exhibits characteristics of an explanatory sequential design. Finally, England et al.’s (2016) study, where they first conducted qualitative interviews and then created quantitative data, can be characterized in part as a sequential design. These are only a few key distinctions in conceptualizing mixed methods. There is ample debate about mixed methods typologies (see Guest 2012), along with what philosophy of science best partners with mixed methods research (e.g., Kroos 2012). In light of these multiple conceptualizations, Mertens and colleagues (2016) aptly maintain that mixed methods are “practiced in many different ways, under different names and/or without definition as such at all, in different disciplines and countries” (4).

Mixed Methods in the Sociology of the Body and Embodiment Since the 1980s, the sociology of body and embodiment subfield has seen parallel growth alongside studies on gender, sexuality, intersectionality, and feminism (Shilling 2007). According to Shilling (2007), growing interest in the body was influenced by multiple factors, including new meanings about personal consumption, the rise of second wave feminism, and technological advances that contributed to uncertainty about the body. Specifically, the subfield developed in the last 40 years in part because of the need to interrogate a number of dualisms within sociology and to uncover body-relevant work within the sociological tradition. Indeed, the body was recognized in and of itself as a legitimate object of sociological inquiry. Today, as scholars have observed (e.g., Adelman and Ruggi 2012), the subfield cuts across disciplinary boundaries, exhibiting diversity in philosophical, empirical, and methodological approaches. Scholars of embodiment today examine a plethora of topics, including disability, sport, body size, health, and sexuality, using an array of methods. Mixed methods can provide scholars an important tool for understanding embodied lives. The use of quantitative methods, such as a survey with, say, a probability sample, enables researchers to document broader statistical (including causal or correlational) trends in a population, whether these trends are about the use of cesarean section delivery rates in United States by race, ethnicity, and socioeconomic status (e.g., Roth and Henley 2012) or correlates of aging women’s attitudes toward cosmetic surgery (e.g., Slevec and Tiggemann 2010). At the same time, the use of qualitative methods enables researchers of the body to flesh out lived embodiment practices and social-psychological processes. For example, qualitative analysis of open-ended questions about cesarean deliveries documents the distressing nature of these surgeries on women’s psychological well-being, thereby ­paving the way for new policies to improve women’s satisfaction with birthing (Porter

Mixed Methods in Body and Embodiment Research   73 et al. 2007). Similarly, qualitative interviews with women who have consciously opted in or opted out of cosmetic surgery take us beyond the numbers, revealing the life course circumstances that shape life-changing decisions about one’s aging body (Brooks 2017). Combining quantitative and qualitative approaches potentially provides a more comprehensive picture, illuminating both population trends (and its correlates) and lived social experiences. Although sociology has been slow to embrace mixed methods (Pearce 2012), there are nevertheless examples of mixed methods research in this subfield. To illustrate these methods in practice, we begin first with the first author’s work on body weight.

Competing Cultural Meanings about the “Overweight” Body: Complementing, Triangulating, and Developing The first author’s dissertation project (Kwan 2007), as well as published work produced from dissertation data (e.g., Kwan 2009a, 2009b, 2010; Kwan and Graves 2013), explores the contested field of body weight and how individuals make sense of these contested meanings in their everyday lives. Specifically, Kwan’s early research agenda addressed the following: How do cultural producers (who have a stake in public understandings about the body) frame messages about the “overweight” body?1 Moreover, do these messages resonate, and what do these messages mean in everyday lives, particularly in the lives of people of size? She was interested in these questions because, as sociologists have established, many social issues involve framing competitions—struggles over the production of ideas and meanings (Benford and Snow 2000). Framers compete to have their version of reality become an authoritative version (Hilgartner and Bosk  1988). Moreover, as scholars have long pointed out, situations perceived as real are real in their consequences (Thomas and Thomas 1928). To address her research questions, Kwan conducted qualitative content analysis of beauty and weight loss industry advertisements, public health fact sheets, organization websites, and more. This content analysis allowed her to document how cultural producers such as the Centers for Disease Control and Prevention and the National Association to Advance Fat Acceptance promulgate cultural frames to shape public understandings of the overweight body. To understand the resonance of these frames, she conducted quantitative ­surveys (n = 456) with individuals of all body sizes. Finally, to understand the meanings of these cultural messages in the lives of those who are especially impacted by these messages, Kwan conducted in-depth qualitative interviews (n = 42) with individuals who self-identify as overweight.2 Her research was especially attuned to intersections—how gender, race and ethnicity, class, and body size come together to shape bodily experiences. Several motivations drove her use of mixed methods. These motivations reflect the benefits of mixed methods discussed in the literature. Specifically, methodologists ­document how mixed methods add value to projects through complementarity,

74   Samantha Kwan and Trenton M. Haltom t­ riangulation, and development (see Collins, Onwuegbuzie, and Sutton 2006; Creswell and Plano Clark  2011; Greene, Caracelli, and Graham  1989; Plano Clark and Ivankova  2016; Rossman and Wilson  1985; Sechrest and Sidana  1995; Small  2011). Because Kwan sought and received funding through a National Science Foundation (NSF) Doctoral Dissertation Improvement Grant, complementarity, triangulation, and development were intended to boost the research’s credibility and, subsequently, funding appeal. Moreover, she was interested in understanding both general patterns about cultural frames (hence, the quantitative component), as well as the lived embodiment of individuals using an intersectional lens (hence, the qualitative component).

Complementarity With complementarity, a researcher uses qualitative and quantitative methods to meas­ ure different facets of a phenomenon, resulting in an enriched understanding (Greene, Caracelli, and Graham 1989). For example, Plano Clark and Ivankova (2016) argue that researchers may need to use qualitative methods to explore a process and a complementary quantitative method to examine outcomes from that process. Or they may use quantitative methods to describe general trends about a social phenomenon and then turn to complementary qualitative methods to explicate these trends. Kwan’s core questions examine different aspects of a social phenomenon, necessitating the use of complementary methods. The first research question focuses mainly on cultural producers, while the second focuses mainly on cultural consumers. While Kwan’s qualitative content analysis described the cultural logic of these frames and their discursive consequences, it did not reveal the meanings of these frames in everyday lives. Examining this required the use of additional methods. First, descriptive statistics and regression analysis of survey data enabled the documentation of how cultural frames work in a general population. The use of in-depth interviews then enabled explication of these trends by tapping into the meanings of these frames in the everyday lives of people of size.

Triangulation Triangulation is about seeking “convergence, corroboration, [and] correspondence of results from the different methods” (Greene, Caracelli, and Graham 1989, 259). The logic is that comparing results from one method with another will result in more valid conclusions about the social phenomenon. For example, a researcher could compare the statistical ­findings obtained from a questionnaire with the themes arising from qualitative interviews. When there is agreement across these findings, researchers can be more confident about their results; when discrepancies emerge, they should take steps to reconcile their results (Creswell and Plano Clark 2011; Plano Clark and Ivankova 2016; Wagner et al. 2012). To provide a simple illustration, Kwan (2009b) found that survey participants generally support free-market policies and an emphasis on personal responsibility consistent with the food industry frame. So, when asked about the use of warning labels to identify

Mixed Methods in Body and Embodiment Research   75 unhealthy foods taxes, 70.6 percent of survey participants agree with the use of these labels. Qualitative interviews shed light on the reasoning behind this number. In this case, they illustrate how labels might serve an effective deterrent function. As John, one interview participant, said: “That might not be a bad idea. The only reason why I say that is because for someone who does have a weight problem, it might guilt me into not eating, not taking the bite or whatever. Yeah, I could go for that I guess. It’d be kind of a humorous read [laughs]” (Kwan  2009b, 487). Here, qualitative data corroborate descriptive statistics, illustrating the preponderance of views in a large sample, as well as flesh out some of the meanings behind the numbers.

Development Development occurs when researchers use the results from one method to develop or inform another (Plano Clark and Ivankova 2016). Here the use of mixed methods is sequential (Plano Clark and Ivankova 2016). As Greene, Caracelli, and Graham (1989) point out, development is broadly construed. A researcher could use information derived from one method to inform decisions at a second phase about, say, sampling, measurement, instrument development, or implementation. For example, a researcher could use the results of a quantitative survey to shape questions asked in a follow-up qualitative interview. In Kwan’s (2007) research, development occurred at two points. First, the initial qualitative content analysis laying out the cultural frames provided the foundation for developing both the survey questionnaire and the interview guide. Kwan needed an understanding of the tenets and rhetorical devices deployed by each cultural producer to develop the survey and interview questions. Second, the quantitative surveys served as a qualitative interview recruitment tool. Specifically, the survey instrument was administered to undergraduate students at a public university and community college. The questionnaire contained closed-ended items that tapped into demographics, along with participants’ perspectives on each frame. The final page of the survey asked participants if they would be willing to participate in a paid follow-up face-to-face interview. If so, they were instructed to provide their name and contact information. The governing Institutional Review Board approved the project so long as procedures protected the identity of survey participants. As such, Kwan removed the final page of the survey immediately upon survey data collection. She then securely stored these pages containing identifiers in a location separate from the survey data.

Intersections, Mixed Methods Research, and Lived Embodiment Mixed methods research holds special promise for scholars interested in understanding intersections. Developed by black feminist scholars in the 1980s, intersectionality is a framework for understanding human experiences that moves beyond a single category

76   Samantha Kwan and Trenton M. Haltom of analysis such as race or class or gender (Collins 1990; Crenshaw 1989). It acknowledges that various social categories interact simultaneously to shape identity and experiences of oppression, domination, and privilege. This entails a rejection of an additive approach that assumes social inequality increases with the addition of each disadvantaged category. An intersectionality framework further assumes the constructed nature and fluidity of social categories, and it recognizes the dynamic role of social processes and structures at any particular time and place (see Hankivsky 2012). Intersectionality research attempts to give voice to “the multidimensional lived experiences of people in the full context of their social lives” (Hankivsky and Grace 2015, 8; see also Choo and Ferree 2010 for a critique of this approach), and qualitative research is well suited to this goal. As Narvaez et al. write: Open-ended qualitative approaches have strength when assessing processes and temporality and allowing respondents to talk about idiosyncratic identity constellations. Group-oriented techniques, such as focus groups, and individualized ­techniques, such as in-depth interviews, life histories, personal narrative, and autoethnography, can capture, overall, the intersection of identities and their relationship to context.  (2009, 4, citations removed)

Thus, not surprisingly, most intersectionality research to date has been qualitative (Choo and Ferree 2010; Hankivsky and Grace 2015; Hunting 2014). Indeed, as aforementioned, this holds true of the work in the sociology of the body, which exhibits strong qualitative leanings. Returning to our first case study, because Kwan was interested in understanding how race, gender, and body size intersect to influence everyday experiences about body weight, her project required a qualitative component. Thus, she turned to qualitative interviews largely to understand meaning-making and how cultural frames shape the lives of individuals who self-identified as overweight. Simply put, survey methods are inadequate in attaining this goal. Moreover, she purposefully obtained a diverse interview sample comprised of 23 women and 19 men, about half of whom identified as white, about a quarter as Hispanic, and about 15 percent as African American. She also intentionally sought participants who might find it difficult for financial reasons to achieve aesthetic and health norms. Interview participants typically had annual household incomes less than $30,000. Her analysis revealed that aesthetic body ideals impact everyday lives differently depending on social location. Specifically, it revealed a body privilege continuum d ­ istinctly patterned by gender and race. While almost all interview participants expressed a level of discomfort and body consciousness (i.e., awareness of nonconformity to hegemonic body norms) in public spaces (e.g., when using public transit or at work, school, or shopping), this was especially the case for white and Hispanic women. These women exhibited heightened body consciousness and, consequently, would implement a number of psychological and physical body management strategies to either cope or pass as thin (Kwan 2010). For example, Brittany, a 24-year-old Latina, described how she was so self-conscious about her body that she physically postured herself to minimize the fat under her chin. She shared: “In

Mixed Methods in Body and Embodiment Research   77 public situations, I’m really uncomfortable. I went with my boyfriend’s family [to a restaurant] and I was just—Oh my God—you know, I’m sitting there and I had a little skirt on and a shirt. I sat up straight and I’d try and keep my head up so you can’t see my chin. You know what I mean? So it’s always there. It’s always, always there!” (Kwan 2010, 152). In contrast is Kirk’s experience of body consciousness. He is 26 and white. He reflected on a shopping incident where he was unable to fit into a pair of size 44 pants. Here is how he reacted: “When have you ever gotten this mad about being the way you are? . . . Well, oh God, you’re an idiot” (Kwan 2010, 154). Kirk stormed out of the store and vowed to be unapologetic about his size. White men and African American women, she found, are more alike insofar as they occupy one end of a body privilege continuum, while white and Hispanic women occupy the opposite end (for further details, see Kwan 2010). Only revealed through indepth qualitative interviews and an intersectional approach to lived embodiment, Kwan’s research illustrates how multiple social locations shape experiences of body consciousness, as well as the body management strategies that follow. She explains these counterintuitive findings in light of an intersectional approach that acknowledges male privilege and hegemonic masculinity, as well as more flexible conceptions of beauty in the black community (see Kwan 2010). While lived embodiment and intersectionality are best captured through qualitative methods, it is important to point out that in recent years quantitative scholars have begun to apply an intersectionality framework (e.g., Dubrow 2008). Unlike traditional additive quantitative analysis that examines in isolation the effect of various identity measures such as race, gender, sex, income, and age on a social outcome, intersectionalityinformed quantitative research does not consider identity categories mutually exclusive. A multiplicative approach, at a minimum, includes “two-way and three-way (or more) interaction terms of demographic categories to account for the conditional effects of intersecting categories on a social outcome” (Rouhani 2014, 3; see also Dubrow 2008). While the relationship between mixed methods and intersectionality is currently in its infancy stage (Hankivsky and Grace 2015), leading methodologists acknowledge: “Both methods are needed to produce a full and complete portrait of intersectionality, and to test its main assumptions” (Dubrow 2013, 164). For this reason, among other theoretical reasons, Kwan included interaction terms in her regression analyses.

Drawbacks and Challenges of Mixed Methods Research While mixed methods provide researchers the ability to enrich, corroborate, and raise the credibility of their findings, researchers using mixed methods face a number of unique challenges. The first challenge is a matter of skill. As Creswell and Plano Clark (2011) maintain, researchers should have a firm grasp of the logic of hypothesis testing, the use and interpretation of statistics, issues of reliability, validity, experimental control, and generalizability. They also recommend that researchers have the ability to pose qualitative meaning-oriented research questions, consider participants as experts, code and interpret qualitative data, and understand issues of credibility, trustworthiness, and

78   Samantha Kwan and Trenton M. Haltom common validation strategies. Simply put, a mixed methods researcher must be competent in the logic and execution of both methods. Second, mixed methods can involve substantial expenses. Researchers should be prepared, for instance, to acquire both statistical and qualitative software programs, compensate both survey and interview participants, print quantitative surveys, and transcribe qualitative interviews. Finally, scholars often work with tight timelines. Given dissertation deadlines, the tenure clock, and publication goals, the time required to conduct thoroughly a mixed methods study may not always be feasible. These considerations were real in Kwan’s project. Because the graduate program she was matriculating in focused mainly on quantitative methods, Kwan sought additional training in qualitative methods by participating in American Sociological Association didactic seminars on qualitative research, as well as training on Atlas.ti—a workbench for qualitative data analysis. She was grateful to receive NSF funds that enabled the purchasing of this software and the funding of several full-day Atlas.ti workshops. NSF funds further enabled her to compensate interview participants and transcribers. This sped up the recruitment process and reduced the data preparation time. Kwan admits that completing a mixed methods dissertation in light of graduation deadlines and a pending tenure-track job created inordinate pressure. As such, she cautions others to consider seriously the time commitment involved with a mixed methods study.

Efficacy and Contraceptive Use: Making Quantitative Data out of Qualitative Interviews We now turn to two additional studies to illustrate further the use of mixed methods. Both studies may be useful to body scholars because they not only show the application of mixed methods, but because the topics studied are particularly touchy or uncomfortable—often the case with body-related topics. Moreover, both studies illustrate well the use of mixed methods to understand causal or correlational statistical trends about the body, alongside elements of lived embodiment. In both studies, quantitative and qualitative data come together to create a more comprehensive picture of embodied lives. The first study by England and colleagues (2016) examines why unmarried women in their 20s who do not want to get pregnant are inconsistent with contraceptive use, and the role of efficacy in this process. In their sequential design, they first conducted qualitative interviews (n = 99) with women on four college campuses. They then numerically coded their interview data into quantitative data using textual fields in NVivo—a software program that supports qualitative and mixed methods research. Their main independent variable—a three-category efficacy scale (low, medium, and high)—came from their coded transcripts of interview participants’ self-reported behaviors such as planfulness, self-regulation, assertiveness, and belief in the ability to

Mixed Methods in Body and Embodiment Research   79 take action that affects outcomes (unrelated to contraceptive use). The authors give an example of “high” efficacy if a woman worked ahead in school, did not procrastinate, confidently addressed topics other than contraception with partners and friends, and had a positive outlook toward achieving goals (6–7). The opposite received a “low” efficacy score. They also created a dichotomous contraceptive consistency variable based on whether or not a participant indicated in her interview that every act of intercourse was protected. Along with these independent and dependent variables, the researchers coded socio-demographics such as class and race, as well as partnership characteristics such as partnership length and cohabitation. Their logistic regression results show a statistically significant relationship between high efficacy and the likelihood of consistent contraceptive use. In their full statistical models, England et al. (2016) find that, compared to women with low efficacy, women with high efficacy are five to eight times more likely to use contraception consistently. These models also find no significant relationship between class and consistent contraceptive use. An unweighted full model (that gives every partnership the same importance regardless of length), however, reveals differences by race. Specifically, compared to black women, white women and women of other races are about twice as likely to use contraception consistently. Such findings allow for theorizing about the relationship between efficacy and the body, such as how low efficacy may lead to pregnancy due to lower likelihood of consistent contraceptive use. England and colleagues use their initial qualitative data to highlight the “linkages between efficacy and consistent contraception work” (2016, 10). In this way, mixed methods serve an offsetting function in their study; they use the strengths of qualitative data to expound social lives and processes—something quantitative data are incapable of doing. That is, the researchers turn to qualitative interviews to capture lived embodiment. For example, they describe the case of Carolina, a young Latina from a workingclass background who reports three pregnancies. Carolina exhibits low efficacy and inconsistent contraceptive use. Regarding the use of condoms, she admits: “I think the first couple of times we were [using] and after that it all kind of left” (England et al. 2016, 10). In reference to the pill, she concedes, “I wasn’t really good at taking it” (England et al. 2016, 10). England et al. point out further evidence of Carolina’s lack of efficacy. She discloses that her study habits are “really bad” and that “I don’t think there’s a right time for anything: it’s just—it happens . . . because . . . it’s gonna happen . . . I’m not a person that really like tries to plan that far ahead because you never know what happens” (England et al. 2016, 10). In contrast to those with low efficacy, England and colleagues use qualitative interviews to show the link between high planfulness and self-regulation (indicators of efficacy) and contraceptive consistency. For example, they describe the case of Jane, a young queer-identified, middle-class Asian attending Stanford who studies for exams over 3 days in advance and always uses the pill or condoms (or both) with her male partner. Overall, the use of mixed methods by England et al. sheds light on how the organization of social lives (efficacy) affects the body (consistent contraceptive use). The authors’ construction of an efficacy scale via qualitative data put both methodological approaches

80   Samantha Kwan and Trenton M. Haltom in conversation with each other and allowed for nuanced results that may not have been produced otherwise. Interestingly, England et al. use their qualitative data for a further purpose—to make sense of negative cases. Thus, they use mixed methods not only to help develop the quantitative portion of their study and to provide details about contraceptive use in the lives of women who are differentially socially located, but also to explain findings that contradict their high efficacy–high contraceptive consistency thesis. For example, they discuss how two black students at Stanford from poor backgrounds exhibit efficacy in academic matters, but they do not use condoms consistently because their partners do not like the physical feel of them. In this way, mixed methods can also help researchers make sense of discrepant findings.

Nude Embodiment: Closed and OpenEnded Questionnaire Items Unlike England et al. (2016) who use qualitative data to develop quantitative measures, Weinberg and Williams (2010) collect mixed methods data in two distinct phases to understand how feelings about nude embodiment affect sexual intimacy and pleasure. In wave one, Weinberg and Williams invited participants for a personal interview, collecting both closed and open-ended data (n = 121). Their initial analysis of wave-one data revealed a relationship between discomfort with nudity and sexual inhibitions. This prompted the researchers to conduct a second wave of data collection consisting of two short self-administered, open-ended questions. They asked participants to describe how they felt about being nude in the presence of others, as well as the effect of these feelings on what they would like, or not like, sexually. Second-wave data collection resulted in 63 additional participants (total n = 184). From the first wave of data collection, the researchers created a “comfort-with-beingnude” scale. This first-of-its-kind scale consisted of items that evaluated participant comfort level (from not uncomfortable to very comfortable) in a variety of situations someone might find themselves naked in front of others (e.g., being examined by a doctor, posing nude for an art class, or being at a nude beach). They also used closed-ended items to create sexual profiles of participants. Weinberg and Williams (2010) present their statistical findings (by gender) mainly in the form of beta weights. They find that, over their lifetime, higher positive nude embodiment scores for women are statistically related to the higher frequency of, among other things, self-masturbation, performing and receiving oral-genital activity, and coitus. For men, the quantitative data point to a relationship between the degree of comfort with nude embodiment and a positive evaluation of a variety of sexual practices, such as watching others have sex, using a vibrator on a partner, and having less guilt over self-masturbation. However, Weinberg and Williams find no statistically significant relationship between nude embodiment and actual sexual behaviors among

Mixed Methods in Body and Embodiment Research   81 men, as they find for the subsample of women. Their quantitative data thus allowed them to describe sexual behaviors among a population and differentiate statistically comparison groups (in this case, by gender). They then use qualitative data to support their survey responses, “which, in addition, elaborated the link between their experience of nude embodiment and subsequent sexual pleasure” (Weinberg and Williams 2010, 55). For example, one woman comments on how comfort with her nude body allows to her to produce sexual pleasure: “Since I am comfortable with my body and being nude, I can focus on other things rather than worrying about being nude. For example, when having sex I do not feel like I need to stay under a sheet or blanket to cover my body, which would limit you to only a couple of positions” (Weinberg and Williams 2010, 56). They also use qualitative data to corroborate the statistical finding that nude embodiment for men is not related to actual sexual practices. As one male participant plainly put it, “I’ve never had sexual experiences where I felt pressure that I was being judged about my body” (Weinberg and Williams 2010, 61). In sum, Weinberg and Williams use open-ended questionnaires, which allow for richer data collection about sensitive topics such as nudity, to enhance the credibility of, as well as elaborate upon, their quantitative findings.

Moving Forward Despite an increase in rates of published articles that involve mixed methods (Ivankova and Kawamura 2010), rates of published research using mixed methods in sociology remains low. A study by Alise and Teddlie (2010) suggests that the prevalence rate for pure disciplines such as sociology is about 6 percent, compared to 16 percent in applied disciplines such as nursing. Pearce’s (2012) review of the top-three sociology journals and two sociology methods journals between 1990 and 2010 found only three items that used the term mixed method. However, she did find 27 articles using both qualitative and quantitative data where the authors did not identify their research as a mixed methods study. Ironically, this lack of mixed methods research in sociology exists alongside an abundance of sociological research falling under the multimethods label. England et al.’s (2016) conversion of qualitative data to quantitative is instructive of how researchers can innovate in their mixed methods designs. The coding of qualitative data for future Qualitative Comparative Analysis also provides another window of opportunity (see Ragin 2014). Kazyak et al. (2016) do what might be described as a reverse of England et al.’s strategy by creating narratives from quantitative data using a technique they label “survey-driven narrative construction.” New cross-platform ­applications such as NVivo and Dedoose can further expand data analysis possibilities, while the use of online methods to understand social life provides a new spin to this third methodological movement (see Hesse-Biber and Griffin 2013 on the benefits of going online). Notably, while there seems to be a draw toward the quantitative survey-qualitative interviews combination, researchers can blend a range of methods such as experimental design,

82   Samantha Kwan and Trenton M. Haltom audit studies, sequence analysis, quantitative and qualitative content analysis, observational and participatory methods, and more. While all these approaches are relevant to scholars regardless of the area of sociology, they may be especially helpful to scholars of the body who examine sensitive topics (such as disability, sexuality, and health-related matters), as the phenomenon of inquiry is broached from various vantage points. In close, we encourage researchers of the body who desire to describe specific embodimentrelated characteristics and processes in a population, as well as thoroughly understand lived experiences of embodiment, to consider mixed methods (and to identify their work as such). After several decades, mixed methods designs are now well developed, yet they remain an untapped tool for scholars to better understand body politics.

Notes 1. Overweight is in quotes in its first usage (in the main text) to reflect the contested nature of the term. In public health discourses, it is a medical category; however, the term holds multiple, including stigmatized, meanings (e.g., Wann 1998). 2. I (the first author) conducted interviews face to face and thus my positionality and embodied subjectivity at the time of the research are noteworthy. Specifically, I am a visible ethnic minority of East Asian descent. I am thin by cultural standards with a youthful appearance. I dressed conservatively when I met with participants (i.e., in middle-class business attire). While I do not share the corporeal embodiment of my participants, I do not think my embodied subjectivity posed a validity threat to data collection. I clearly communicated to participants my role as a nonjudgmental active listener. Many of my interviews were longer than 2 hours, suggesting participants felt comfortable. Moreover, several men explicitly thanked me for the opportunity to discuss body weight—a topic that is often seen as exclusively women’s terrain. I readily acknowledge my body privilege and have written about this topic (see Kwan 2010). Indeed, I approach my research from a constructionist standpoint, acknowledging that meanings about body weight are historically, geographically, and contextually contingent. Moreover, I recognize that power infuses social relationships and that social constructions ultimately shape how individuals see themselves, act, and make life decisions.

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chapter 6

You Tu be V l ogs as Illn ess Na r r ati v e s Methodological Consideration Natalie Kay Fullenkamp

It is April 2005 and a young man stands in front of two elephants at the zoo. We do not know if he is on a school trip, a vacation, or just a quick excursion to see these tusked mammals. What we do know is that someone made a 19-second video of him saying that elephant trunks are cool. This short clip became the first video uploaded to YouTube by the website’s co-founder. It encapsulates the often-quirky nature of videos made available on YouTube, which is now the second-most-visited website in the world (Alexa 2017). Today, YouTube presents video content ranging from the news, to music, to do-ityourself advice. But at its core, it is still known for offering up unexpected glimpses into daily lived experiences—glimpses that would otherwise go uncaptured and unnoticed by a larger public. It provides a medium for people to tell their deeply personal stories to a virtual audience, thereby delving into meaning-making processes of significant sociological import. Indeed, the stories that people tell on YouTube are no longer confined to the innocuous observations of techies turned day-trippers; but also include sobering accounts of ordinary people, coming to terms with profound life events. YouTube videos that present individuals’ experiences with illness are a case in point. In these videos (also known as vlogs), their creators present a range of topics linked with their illness: symptomatology, side effects from medication and treatment, interactions with medical professionals, and all things pertaining to daily functioning and sicknessrelated modifications. As this list suggests, video diaries are information-sharing vehicles. Beyond information sharing, vlogs also constitute a new form of illness narrative. Illness narratives represent a cornerstone of scholarly work examining the illness experience (Charmaz 1991; Kleinman 1988; Riessman 1990; Williams 1984). More specifically, illness experience scholars look to illness narratives as a means of exploring the subjective experience of illness, including the myriad ways individuals enact their ­illness

88   Natalie Kay Fullenkamp and endow it with meaning (Conrad and Barker 2010). Illness narratives operate as a cultural framework for working out “biographical disruptions” that arise when “the structures of everyday life and the forms of knowledge that underpin them are disrupted” (Bury 1982, 169). Illness narratives thus become an active way of reclaiming the sick person’s “voice,” her capacity for rearticulating a self-identity, which is intertwined with cultural expectations and medical prognoses (Frank 1995). In sum, illness narratives have broad import and serve as resources for navigating new routines, adapting to daily life, and asserting selfhood. Social science scholars have largely relied on in-depth interviews and the illness narratives they generate to study the subjective experience of illness (Barker  2005; Charmaz 1991; Schneider and Conrad 1983). Interviews are an effective means by which to capture how individuals construct and manage their illness (Conrad and Barker 2010). But the advent and growth of the Internet has expanded the ability of researchers to collect chronicles of previously private and solitary experiences of illness (Conrad and Stults 2010). When individuals come together in online illness platforms to exchange support and information, they leave a trail of electronic illness narratives that can be studied by those interested in the illness experience. Most sociological research concerning the online illness experience has relied on textual narrations (Barker 2008; Dumit 2006; Foster 2016); and even research charting the ways visual bodies are used to create self-concepts and authenticate membership in online communities relies empirically on static pictures in tandem with text (Boero and Pascoe 2012). As illness narratives, YouTube vlogs represent a new way to both document and study the illness experience. For example, the visual presence of the body and embodiment are inseparable from vlog illness narratives themselves; and, in turn, these embodied narratives are presented to an unknown public audience. Vlogs project the physical body into cyberspace in ways that shape how “wounded storytellers” (Frank 1995) convey, indeed perform (Butler 1990; Goffman 1959; Riessman 1990) their illness. Beyond the specifics of our empirical case, therefore, a study of illness vlogs is relevant to body scholars interested in the representation and construction of bodies in online spaces. We will address these points in some detail; however, the central goal of this chapter is to lay some methodological groundwork for the social scientific study of illness vlogs.

Vlogs as Data Existing scholarly work on YouTube has primarily focused on the vlogger’s spoken words. In the field of health communication, scholars have examined the dissemination of health information on YouTube (Madathil et al. 2015). In this vein, researchers have focused on the degree to which the vlogs are purveyors of “misinformation” (Briones et al. 2012). Other researchers eschew concerns about the accuracy of health information in favor of approaching YouTube as a medium for storytelling. For instance, Chou et al. (2011) employ narrative analysis to understand the linguistic elements of cancer

YouTube Vlogs as Illness Narratives   89 s­ urvivorship videos, such as dramatic tension and emotional engagement, which contribute to highly captivating stories. Even as Chou et al. (2011) provide a compelling example of how researchers can use vlogs to understand the subjective experience of illness as narrative, the scope of their analysis is limited to verbal content and omits YouTube’s visual aspects. A few health researchers take greater advantage of the empirical riches of YouTube vlogs. Liu et al. (2013) note critical distinctions between textual accounts of illness and video accounts. They describe various “affordances” of video, including nonverbal cues such as pauses, exhibitions of the body, crying, and facial expressions, as well as aspects of the recordings themselves. Such affordances, according to Liu et al. (2013), can convey significant meaning and forge connections between vloggers and their viewers. In addressing video affordances, Huh et al. (2014) study how props are used to create a show-and-tell effect, as an illustration of the visual potency of vlogs. And, in a study of YouTube videos made by individuals recounting their experiences with the genetic testing company 23andMe, Harris and colleagues (2014) address different layers of meaning conveyed via vlogs. Specifically, they use a narrative approach to focus on the material conditions of storytelling (e.g., bedrooms), the embodied aspects of storytelling (e.g., facial expressions, salivating, exhibiting the body), and performativity (e.g., how the storyteller presents herself to the audience). Communication studies scholars also emphasize the empirical layers of vlogs beyond the spoken word. For instance, researchers can analyze the gaze of the video creator (Molynuex et al. 2008). In a similar vein, Horak (2014) considers how transgender vloggers serve as “talking heads”—using their bodies from their chest upward—to assume an expert role that combines the corporeal body with stagecraft to draw in the audience. These and other visual aspects of vlogs can enhance a narrative’s intensity and intimacy. We build on many of these insights concerning the qualities of YouTube vlogs as data for researchers interested in the illness experience. Of consequence to body scholars: vloggers’ observable bodies and embodiment are part and parcel of their illness narratives. It can be said that illness sufferers use their body to tell stories, in addition to telling stories about the body; or, drawing on Leder’s (1990) important assertion, illness vlogs are about bodies and require bodies. Illness vlogs also represent and construct particular bodies. In the floxie vlogs we studied, the once well but now medically damaged body is a social location with exacting life chances.

The Case of Floxies We examined the case of fluoroquinolone (FQ) toxicity as presented by YouTube vloggers. Fluoroquinolone toxicity is a constellation of symptoms that some individuals report in the wake of taking synthetic antibiotics known as fluoroquinolones. There is no dispute that there are adverse drug reactions (ADRs) to fluoroquinolones. There is a dispute about the type, severity, and chronicity of these ADRs (Cohen 2001). On one

90   Natalie Kay Fullenkamp side of the divide are regulators, medical providers and the pharmaceutical industry, all of whom acknowledge a limited set of ADRs. During the last several years, the Food and Drug Administration (FDA) has issued several black-box warnings to fluoroquinolones, including one in 2016 that recommended against the use of these drugs for routine infections, on grounds that they are associated with some musculoskeletal and central nervous system side effects.1 On the other side of the divide are individuals who report a vast collection of severe, widespread, and long-lasting fluoroquinolone side effects that far exceed the formal warnings of the FDA. For some, FQ toxicity becomes debilitating, resulting in the loss of former professional and social roles. For well over a decade, FQ toxicity sufferers, who identify as floxies, have made their private struggles public in online illness forums. They have also actively lobbied the FDA to further restrict and ultimately ban fluoroquinolone use. Now, YouTube provides a platform for floxies to make their voices heard and their suffering visible to a vast public audience. A key goal of our study of floxies is to extend scholarly work on the illness experience by examining YouTube illness narratives. What distinguishes YouTube illness narratives, as compared to those generated via in-depth interviews or those available as textual narratives in online patient groups?2 Do vlogs provide new insights into the processes through which individuals enact their illness and endow it with meaning? Are there distinctive ways vlogs serve as a platform for imparting “uncomfortable bodies” (Leder 2016) and encouraging “empathetic witnessing” (Kleinman 1988)? We address these questions in detail elsewhere (Barker and Fullenkamp 2018). For now, we bracket these concerns and turn our attention to presenting a methodological roadmap for the social scientific study of vlogs.

A Methodological Roadmap Despite their empirical promise, there are few specific guidelines for how to go about using vlogs as data. Even after pooling some of the tactics used by YouTube researchers cited earlier, we still had many unanswered questions concerning data selection, coding, and analysis of vlogs.3 Given this dearth of methodological guidance, we describe a template for the use of YouTube vlogs as data. This template is but a modest step and is by no means intended to serve as a definitive exemplar of vlog analysis. Rather, we describe our process and discuss some of the benefits and limitations of our approach. Our hope is that this template will provide guidance for future research. Along with other scholars, we seek to collectively contribute to building methodologies for the use of vlogs as data.

Development of Sampling Frame The first step in our research process involved finding our data. It is rarely possible for social scientists to study every instance of the phenomenon in which they are interested.

YouTube Vlogs as Illness Narratives   91 Instead, they study a sample of those instances. There are different theories of sampling, but all of them point toward the careful and informed selection of a smaller number of data units (i.e., a sample) from a larger collection of data units (i.e., the population) (Ritchie & Lewis 2003; Weber 1990). Our unit of analysis is the posted video. In our study we selected a sample of forty-nine videos produced by twenty-eight individuals (eighteen men; ten women). A sample of this size is well within the norm for qualitative research, given that the emphasis is on interpretive analysis rather than estimates of statistical significance (Wilmot 2005). Before we began the selection process, we first had to develop a sampling frame, which is a list of all the data units in the population used to select the sample. One of the key challenges in developing a sampling frame comprised of YouTube videos is the fact that although data are publicly available on the website itself, they are not available in a thematically organized location. While online forums often have discussion boards dedicated to a specific illness or to topics related to an illness, this kind of categorization does not exist on YouTube. Thus, researchers need to start with keyword searches to find videos in line with their substantive interests. One potential pitfall is that researchers may impose their own vocabulary to describe a searchable phenomenon, rather than using the terminology of YouTube users. For instance, it was necessary to use the terms “floxies” and “floxed” in addition to “fluoroquinolone toxicity” to capture relevant vlogs. Additionally, we found that FQ toxicity vloggers would often misspell the word “fluoroquinolone” or would use a brand name such as “Cipro.” These discoveries led us to retool and expand our search criteria with the goal of making our sampling frame as comprehensive as possible. Yet even with an awareness of terminology-generated barriers, we realized that keyword searches would pick up extraneous videos and omit clearly relevant ones. To counter these problems, we used a feature of YouTube—the right rail—to find other pertinent videos. When you do a keyword search and select a YouTube video, similar videos are displayed along the right rail. Clicking on one of these videos will then yield another display of similar or recommended videos, which may also be apt, given your research topic. Thus, the right rail serves as an important tool for hunting down relevant videos to build a comprehensive sampling frame. In our study, we quickly realized that some vloggers posted numerous videos related to our topic, some posted a handful of videos, and others posted only one. But once an individual posted a single video that allowed us to identify him or her as an FQ toxicity sufferer, we were able to search all of the videos created by that individual, using the person’s YouTube user profile. Especially for those vloggers who had a sizable number of YouTube video uploads, who we call super-vloggers, it was effective to search for and make a record of their videos by using individual YouTube user profiles. Searching for videos is but an initial step in creating a sampling frame. Once you have searched for and identified videos using a combination of the three methods described earlier (i.e., keyword, right-rail, and known-vlogger searches), the next step is to determine if each identified video meets the study’s pre-established criteria for inclusion. We decided that videos had to meet the following criteria: be posted by an individual who reported experiencing FQ toxicity; be about the experience of FQ toxicity; be spoken in

92   Natalie Kay Fullenkamp English; be audible and intelligible; have no advertising; and be no longer than 2 hours. Videos were excluded if produced by social movements and charitable or news organizations. As a next step, we found that it was important to screen videos that met these criteria to ensure their suitability for inclusion in our sampling frame. Screening was especially important for videos produced by super-vloggers, because they posted many vlogs about topics other than FQ toxicity. One individual posted a video with the title of his favorite online game. At first blush, it appeared that this video was not related to FQ toxicity. However, screening the video revealed that it met our criteria, because it discussed the symbolic import of online games and the vlogger’s lack of social connection due to his illness. In general, we found that we could not rely on user-imposed video descriptions as indicators of content. Ultimately, one of us screened each video to determine if it met our study criteria. Although this was a time-consuming step, it helped us create a sampling frame that included those videos that met the study’s criteria, while excluding those that did not. Once researchers determine the criteria for sampling frame inclusion and build a log of relevant videos, the next step is to compile details about each video into an enumerated list. For videos that fit our criteria, we recorded the username of the uploader, the name of the video, the URL, the length (in minutes and seconds), the date of upload, and the number of views. We assigned each of these videos an ID and developed a master list of all videos within our sampling frame.

Sample Selection After we made a record of each video within our sampling frame, we moved to select our final sample. Initially, we considered creating a sample of videos posted only by the three super-vloggers. After all, these three individuals dominate the floxie vlog genre. Moreover, because they upload videos on a semiregular basis, their vlogs allow us to chart the unfolding of their illness experience. Taken together, super-vloggers’ videos have a thickness to them, imbricated with layers of detail set against the shifting backdrop of their emotional landscape and identity search. Often posted in real time, supervloggers supply a detailed chronology that is less dependent on the faded memory of events. The existence of a series of videos recorded and uploaded over time also offers data on the visual state of the body—underscoring its fluidity or even its stability. Finally, when individuals post multiple videos, they tend to showcase banalities and the routine character of illness in their everyday lives. These are, in fact, foundational aspects of the chronic illness experience (Bury 1982; Charmaz 1999). Ideally, researchers interested in detailed accounts of the illness experience as portrayed on YouTube would have multiple videos, created over time, from a substantial number of individual vloggers. In our case, however, we had only three super-vloggers. Simply put, we wanted our sample to include vlogs produced by a larger number of individuals. Doing so would allow us to better distinguish between experiences that are more idiosyncratic and particular—such as a video in which a vlogger tries to capture

YouTube Vlogs as Illness Narratives   93 his eyebrow twitch—versus those that are somewhat more general in nature and which follow a standard narrative arc involving the discovery and response to FQ toxicity. This sampling strategy also permits comparisons between illness narratives as synopsis (i.e., summarized in one or two videos) and illness narrative as detailed chronicle, as captured by super-vloggers. By including the accounts of as many floxies as possible, we were able to identity commonalities across cases and illuminate the myriad ways in which YouTube videos expand our understandings of these publicly performed illness narratives—not least of which is the performative body. After deciding to create a sample from both the super-vloggers and additional vloggers, we had other matters to address. As noted, the super-vloggers’ videos comprise the overwhelming majority of the sampling frame. Research that uses YouTube (and Internet content generally) faces the challenge that the data cannot be deemed representative in any larger sense. Yet there is a tussle between acknowledging that a purposive sample cannot be representative and applying a logic for selection that best captures the sample in terms of breadth, user diversity, length of video, chronological staging, and the number of total videos posted per user. We wanted the sample to be reflective of the parameters of our sampling frame, and, that included, in different ways, both types of YouTube floxies: the super-vloggers and the one- or few-time vloggers. Our sample was purposively selected with an eye toward considering certain characteristics of the videos (Ritchie and Lewis 2003). We started with the vlogs created by super-vloggers. In an effort to take advantage of the detailed information in these vlogs, and to capture their disproportionate presence in our sampling frame, we opted to select ten videos from each of the three super-vloggers. We randomly selected five videos from each super-vlogger from a list of their vlogs organized by the upload video date. This random selection was done to capture the chronological unfolding of their documented illness experience. We also included the first video posted by these three vloggers. Our logic: the first posted video often provides a rationale for chronicling the experience. We also selected their five most viewed videos. We opted to use “number of views” because this metric represents one distinction of YouTube in terms of documenting the illness experience, and it also acts as an extension of previous scholarship that highlights the interactive capacity of the online illness experience. Illness vlogs are created explicitly for public consumption by a general audience. The number of views reveals this intent, and its realization or lack thereof. For one of the super-vloggers, his first video was also one of his most viewed videos. This sampling technique yielded thirty-two videos. We then replicated this logic for the other sixteen vloggers with videos in our sampling frame. That is, for these individuals who had posted more than one video, we chose their most viewed video and their first video. For some, their most viewed video was also their first video and therefore we included only one video in the sample. This approach yielded eighteen videos from sixteen individuals, with our total sample including fifty videos produced by nineteen vloggers. However, in the course of our research, we met an impasse, because one of our three super-vloggers decided to remove all but one video from YouTube, thus leaving us with only two super-vloggers. While we cannot intuit the motivations behind this decision

94   Natalie Kay Fullenkamp

Table 6.1.  Sampling Method Details Vlogger Type

First super-vlogger Second super-vlogger Other vloggers One-time vlogger Two-time vlogger Three-time vlogger Four-to-twelve-time vlogger Total

Sampling Frame

Final Sample

Sampling Frame

Final Sample

Number of Videos

Number of Videos

Number of Minutes

Number of Minutes

325 34 63 17 6 8 32 422

11 10 28 17 3 2 6 49

2,221 285 863

111 84 486

3,369

681

Source: https://www.youtube.com/

on behalf of the super-vlogger, we believed this vlogger’s decision posed an ethical dilemma regarding the use of what was previously public data. Further, this vlogger’s decision reflects how the public status of all online data is temporary and may exist in the public domain for a short-lived shelf life. Ultimately, we felt we could no longer consider this vlogger’s retracted online material as a viable part of our sample. As such, we removed all deleted vlogs from our sampling frame and final sample. In doing so, we reviewed our current sample, and decided that one of our one-time vlogger’s did not fit our sample criteria. We then pivoted to conduct a second wave of sampling to generate a more robust sample. Our renegotiated process reveals how sample determination can be fluid and must be re-evaluated over the course of research, particularly given the potentially transient nature of online data. In the second wave of sampling, we repeated keyword searches and followed our previously established criteria for sample inclusion. It should be noted that we conducted the second wave close to two years after our initial sampling search. This time lapse meant that more vloggers had posted stories of floxing to YouTube following the lead of our initial sample. We initially watched these vlogs with an eye toward consistency between the narratives in the first and second waves of our study. Despite concerns about the possibility that the temporal difference might yield distinct kinds of floxie experiences presented in vlogs, we found that vlog content from our second search paralleled our existing sample vlogs. Our second round of sampling yielded a total of 26 videos created by 7 men and 4 women. As with our previous vloggers we selected vloggers’ first or most-viewed vlog, yielding a total of 11 vlogs, which we added to our sample. Our final sampling frame, summarized in Table 6.1, comprised 422 vlogs and 28 vloggers (18 men; 10 women). Illness narratives generated through in-depth interviewing are usually derived via purposive or convenience sampling techniques and are thus not representative samples as such (Barker 2005; Charmaz 1991). Likewise, we cannot claim that the vlogs in our

YouTube Vlogs as Illness Narratives   95 sample were produced by individuals who represent floxies broadly. Research reveals, for example, that vloggers tend to be disproportionately white and male (Horak 2014; Molyneux et al. 2008; Raun 2016). Our analytic focus, however, is on the experience of floxies as presented on YouTube. Our sample includes at least one video from every floxie who posted to YouTube. In this regard, our sample is robust. Once we selected our sample and had the audio portion of the video transcribed we worked with NVivo, a computer-assisted qualitative data analysis software (CAQDAS). Using NVivo, we were able to simultaneously view each video and its transcription for purposes of coding and analysis. There are many free YouTube video tutorials, which can help researchers navigate the technical aspects of managing audio and visual content in NVivo. We opted to use NVivo because of our existing familiarity with the software, but ATLAST.ti also allows for video analysis and provides different utilities for consideration. As a final note on sample selection, we submitted a research protocol to our university institutional review board, which they formally evaluated as not human subjects research. Because we were interested in online content, the vlog, as our unit of analysis, we did not individually contact the vloggers. We follow the lead of other scholars who assert that the well-understood “Broadcast Yourself ” ethos of YouTube rendered these ethical steps unnecessary (Harris et al. 2014). YouTube content is akin to a television broadcast wherein there are no human subjects, from a research ethics standpoint. Although some researchers may have good substantive reasons for interviewing vloggers as part of their inquiry, our research agenda, focused on vlogs as public performances, was not advanced by doing so.

Methodological Approach At the most basic level we consider YouTube vlogs as texts (Harris et al. 2014), and our methodological approach is a type of narrative analysis. As described by Riessman (2008, 11), narrative analysis is “a family of methods for interpreting texts that have in common a storied form.” Importantly, Riessman conceptualizes texts broadly, so as to include audiovisual narration. Beyond identifying what is being conveyed in a story, narrative analysis focuses on why and how a particular narrative is constructed, as well as who is telling the story and who is thought to be listening (Riessman 2008; Spencer, Ritchie, and O’Connor 2003). Video narratives introduce novel dimensions with respect to the what, why, how, and who of the stories being told (Harris et al. 2014; Liu et al. 2013; Riessman 2008). Moreover, these dimensions influence the stories themselves. Our approach is informed by the assumption that like illness narratives generally, vlogs reveal the processes through which meaning and selfhood are defined and maintained in the face of illness. But vlogs are also explicitly public performances for a general audience; and the visible body literally takes center stage. As will be seen, we bring these overlapping assumptions to the processes of coding and analyzing illness vlogs.

96   Natalie Kay Fullenkamp

Coding the Data Coding is just one way to organize qualitative data (Creswell and Poth  2018; Saldaña 2015). There are implicit analytic assumptions underlying any approach to coding, and we do our best to outline our assumptions here. Unlike grounded theory approaches (Charmaz  2006), which are commonly applied qualitative methods, our analysis hues more closely to an abductive approach (Timmermans and Tavory 2012). We came to this project with predetermined theoretical concerns but remained attuned to “observational surprises or puzzles” (Timmermans and Tavory  2012, 169). The unfolding of our coding strategy reveals a back-and-forth between more deductive and inductive approaches, which constitute the necessary interplay between an empirical and analytic undertaking. Given our theoretical predispositions and our initial review of the data, we were motivated to approach the vlogs through an analytic lens of performance/performativity. Goffman’s dramaturgical framework served as a starting point for our coding frame. Notwithstanding important differences between face-to-face interaction within concrete social settings, and nonsynchronous interactions online, Goffman’s (1959, 1961) core assertion that self-presentation is an ongoing aspect of everyday social life is literally on display in YouTube vlogs. At the base of our coding scheme we started with Goffman’s notion of the “performance” as “all the activity . . . which serves to influence in any way any of the other participants” (1959, 15). Informed by Goffman, we approached the vlogs with the following question in mind: “What do these performers do and say—what types of dramatic devices do they deploy—to create persuasive performances for their virtual audiences, and with what consequence?” We also incorporated other scholarly thinking about performativity (e.g., Barad  2003; Butler  1990; Greco  2012), including the assertion that performances have “reality-producing effects” (Greco 2012) on identities as well as bodies. Thus, we also approached the vlogs with the question, “What do these performances do in terms of the representation of bodily ‘reality,’ and with what consequence?” Guided by these general questions, both researchers watched the same five videos and then came together to compare notes and impressions. Among other things, we created a series of Goffman-inspired codes that captured some of our early thoughts. We started with a wide-ranging code, Goffman-Performance, to represent performative actions on the part of vloggers. As an example, we wanted to address dramaturgical aspects of ill patients’ bodily performances—which included visual expressions of suffering aligned with Goffman’s “sign vehicles” (i.e., appearance and manner). We developed a schema using this loose framework of “concept codes” (Saldaña 2015), which allowed us to home in on the sign vehicles and performative aspects of the vlogs, while also providing room to make new observations. Also based on our early impressions, we created concepts codes for different narrated scripts, including cautionary tale, symptom litany, treatment narrative, and the like. As an illustration, we identified a cautionary tale which features a white, middle-aged man warning about the dangers inherent in fluoroquinolone antibiotics to prevent others

YouTube Vlogs as Illness Narratives   97 from being “floxed”. Coding for different types of narrated scripts was a useful technique to ensure that we paid attention to a vlog’s narrative coherence, rather than distilling the videos down to a collection of disaggregated concept codes (Bury 2001; Riessman 2008). With a preliminary coding framework in hand, we both rewatched the same five videos noted earlier. We also each watched five additional videos, for a total of fifteen ­videos. Working in NVivo with these fifteen videos, we assessed the utility of our preliminary codes. Working separately, we watched the videos, slowing them down and rewinding them as needed, while coding their audio and video content. After working through the fifteen videos, we met and discussed several ways to revise our coding frame. We discussed coding discrepancies across the five shared videos. We resolved these discrepancies and added more details to our codebook to better conceptualize and operationalize some of our fuzzier codes (see Figure 6.1). This step highlights the importance of creating and refining a detailed codebook. This is easy to do using qualitative data analysis software and helps to improve consistent coding across coders and time (Creswell and Poth 2018). Our entry for Cautionary Tale serves as an example. We also decided to create a number of additional dramaturgical codes, including impression management, backstage matters, and stagecraft as cases in point. The creation of these and other codes was aided considerably by the process of memo writing, a feature that allows researchers to insert notes that capture their thoughts and impressions as they code or otherwise interface with the data (Charmaz 1999). Fullenkamp wrote a Reflective Précis memo for each vlog. Précis memos brought several themes to our attention that we incorporated in our coding frame, including cinematic framing (i.e., use of the camera), narrator style (i.e.,

Figure 6.1.  A detailed definition of each code improves coding consistency. Source: NVivo Software

98   Natalie Kay Fullenkamp aspects of the narration), and what we dubbed uncivilized bodies (to be addressed in more detail shortly). In the iterative process of coding and refining our coding frame, we faced a seemingly insurmountable challenge. Although we wanted to code spoken and visual content, the sheer volume of audiovisual content was overwhelming. If, as the saying goes, “a picture is worth a thousand words,” even a short video contains a staggering amount of meaningful visual content. The videos in our sample range in length from 43 seconds to 1:12:29 minutes, with a mean of 14:31. The total sample included 681 minutes of video. We needed some rules of thumb to assess visual content without drowning in a sea of data and thus jointly collaborated to establish coding standards, such as how much of the visual content to code. For example, if a vlogger was in bed or otherwise immobile throughout the video, should we code the entire video as “using the body as evidence of illness” or just the first 30 seconds, or minute? We settled on coding the first minute in such cases. Likewise, we wanted to code for gestures and nonverbal cues, feel of the scene, use of props, and cinematic frame. We agreed to code 1-minute segments of the video to capture key visual content rather than coding each and every instance of these details in a single video. Similarly, because our sample of 681 minutes of video also includes silence, pauses, crying, voice volume and tonality, and additional audio embedded with dramatic intent, we made similar decisions in terms of coding nonscripted audio. These decisions were made to reduce our coding workload; but, unlike coding a section of a text in NVivo, coding a section of video automatically retrieves the entire video. This approach, therefore, did not risk disassembling a performance. Furthermore, we were not interested in knowing how many seconds or minutes of a video involved a vlogger using a cane—only that a vlogger used a cane as part of her or his performance. In jointly establishing our coding practices, we prioritized our intellectual desire to attend to the overarching feeling of the performance while also capturing constituent aspects of salient audiovisual content. Also at this stage we began to organize our coding into a hierarchal structure to bring order and some analytic clarity to an unwieldy set of independent codes. This involved both lumping and splitting (Saldaña 2015). With regard to the former, we agreed to code various aspects of embodied appearance (i.e., highly groomed, polished appearance, undressed, unbathed, disheveled, etc.) within the codes civilized and uncivilized bodies. Several vloggers appeared unconstrained by socialized modes of being customarily associated with frontstage performances. Rather, they dressed in bedraggled pajamas, did not wash or brush their hair, eschewed clothes, wept on camera, and scratched or otherwise exhibited their bodies with little attention to rules of etiquette, manners, and gender norms. Their illness journeys, presented to a broad YouTube audience, reveal not only a biographical disruption but also a new bodily normal. Importantly, both civilized and uncivilized bodies are used to add credibility to a performance and speak to the dramatic impact of the body as “expressive equipment” (Goffman 1959) in these illness performances. An example of splitting included the unpacking of our original code of GoffmanPerformance into a number of different categories and dimensions. One dimension

YouTube Vlogs as Illness Narratives   99 included performance styles. We found that vlogs tended to adhere, more or less, to either a scripted or improvisational style. On one hand, scripted vlogs frequently privileged the impartment of formal knowledge to the audience (e.g., “talking heads” (Horak 2014). Some vloggers actually read a script, sometimes sitting behind a desk to add further visual conveyance of authority. On the other hand, an in-the-moment quality of form and content marked the more improvisational performances, as was the case of a vlog created while on a bike ride. Details from our codebook for Improvisational Performances include the following: “These performances are often unscripted/rambling, and capable of catching the viewer by surprise due to a lack of coherence or banality. The persuasiveness of scripted performances resides in an authoritative presentation of self, whereas improvisational performances are persuasive by way of authenticity.” We returned to our same set of fifteen videos, making sure to code both the corresponding video and transcript using our coding frame, which by this point included a very detailed description and examples of each of our codes. We coded individually and then met to discuss and address our coding alignment. Having co-constructed and amended the coding frame through several iterations, we felt that our shared sense of the task and our well-documented codebook warranted dividing up the videos equitably and each coding roughly half. We also took on the task of classifying each video in terms of attributes we considered salient. We classified each video in terms of the vlogger’s gender, race, and age. Researcher-imposed demographic information is inherently problematic. Therefore, we used this information less as a precise measure of the sample and more as a general assessment of who vlogs about FQ toxicity using YouTube. Most of our vloggers were under age 50, and like other YouTube studies, the majority of vloggers were white (Chou et al. 2011; Horak 2014). We identified eighteen of the vloggers as men and ten as women. We collected these data points to be as explicit as possible about the social location and characteristics of our vloggers, and thus the socially situated aspects of the identities and bodies at the center of their performances. We also classified each video in terms of the presumed or intended audience. For instance, we found that the majority (over 95 percent; n = 47) of videos were made for the YouTube audience writ large, rather than to reach other floxies.

Thinking with and Past Codes With all forty-nine vlogs coded, we could readily see which of our codes were most prevalent. But we did not code to generate frequencies per se, but rather to uncover robust patterns of theoretical interest. As is commonly the case, there were some paths we pursued in the process of coding that did not pan out. For example, we entered into this project keen to explore illness affiliation on YouTube; but this exploration was a dead end given that only a few vlogs targeted fellow floxies. Conversely, although we coded many vlogs for time (e.g., time as a meaningful aspect of the illness experience [Bury 1982; Charmaz 1991]), we were unable to meaningfully address temporality given

100   Natalie Kay Fullenkamp that some our vloggers posted one short video while others post hours of content over several years. As these details attest, coding is not an end in itself. It is an intermediate stage between the raw data and analysis. The task is to determine which codes are empirically robust and theoretically potent. Thinking with our codes involves transforming coded results into theoretical concepts (Creswell and Poth 2018). This transformation partially relied on memo writing. Earlier in the chapter we addressed the use of memo writing as a tool to help researchers create codes while sifting through the data. At this stage, memo writing functions as a pivotal step between coding and analysis. Memos are used to help researchers think about their “qualitative codes as categories to analyze” and assist them in creating theoretical constructs (Charmaz 1999, 376). We turn to a description of one such example from our project. We wrote a memo in dialogue with the codes civilized/uncivilized bodies and using the body as evidence. In the process of thinking about these codes, we began to reflect on the ways they were demonstrative of “body work.” The concept of body work has different meanings (see Gimlin 2007) but in this case, we mean the management, modification, and presentation of the body and bodily appearance necessary for a social performance. In these vlogs, body work is an integral element of persuasively performing illness to an imagined audience. One super-vlogger often films himself in a shirtless state. By ignoring bodily conventions (i.e., uncivilized bodies) he shows how his illness has literally and figuratively stripped him of his ability to comply with—or even care about—social norms, consistent with audience expectations. More than an indifference to social norms, his exposed body is “Exhibit A” of his medical condition. Through body work, vloggers position the body as an “obdurate fact” (Frank 1995) and as irrefutable evidence of a chronic illness that medical authorities have been loath to treat accordingly. More broadly, body work conveys the moral status of sufferers as deserving and in need (Charmaz 1999). Body work is illustrative of one of our central claims concerning vlogs as illness narratives (Barker and Fullenkamp 2018). Specifically, body work is an aspect of what we call body exhibitions. Body exhibitions are one of vlogs’ five dramatic devices, along with stagecraft, cinematic impact, affective enactment, and narrative recital, which provide storytellers with distinctive affordances vis-à-vis constructing and conveying the illness experience. We explicate how these affordances reconfigure the lifeworld of sufferers as the social location of reality construction moves into online spaces. We also explicate the ways theses affordances yield theoretical insights concerning the lived experience of illness and embodiment.

Conclusion YouTube vlogs are a rich, free, and publicly available source of data regarding the everyday experience of illness and embodiment more broadly. Simply put, vloggers upload a video on YouTube so that other people will see it. Its mere presence on the site is an

YouTube Vlogs as Illness Narratives   101 i­ nvitation to watch and listen. Vloggers relinquish their anonymity with the expectance of a delayed and ongoing gaze. When the audience watches the video, it indicates a type of engagement and interaction in which not only are people willing to be watched, but YouTube viewers express a willingness to watch—an extension of what Ricoer has called a “willingness to listen” (Jurecic 2012). This nod to the ever-present virtual audience— one that brings a sensitivity to watching and attending to the visual story of the “wounded storyteller”—overlaps with our analytical framework, to view the video as a performance. We come to an end of this project humbled by the realization that scholars can never analyze the multiple layers of conveyed meaning in vlogs. The purpose of our discussion of sampling, coding, and analysis is to be as transparent as possible about the decisions we made so that other researchers could, at least in spirit, replicate our work. As with other qualitative research, there are limits to working with such positivist assumptions. Given how content–rich the over-700 minutes of video in our sample are, it seems certain that other scholars would see and highlight different things; but we feel that it would be unlikely that they would not also see what we have described or see notable contradictory content. Perhaps this outcome is the best we can hope for when trying to bring notions of validity to the analysis of vlog content. Going forward, we are confident that vlogs present a fruitful form of data for scholars of embodiment. Some of the outlined methodological tools should prove useful to scholars examining YouTube vlogs that implicitly or explicitly reflect on the intersection of corporality and subjectivity. To give a few examples, aspects of our methodology could be useful to study vlogs that present “coming out” stories; stories about becoming Trans, stories about abortion/pregnancy/birthing; stories that document romantic heartache; or stories about the lived experience of race. Although we opted not to include viewer comments in our analysis, doing so would provide insight into the relationships forged between vloggers and their audience and situate the study of YouTube more directly in line with an interactionist approach (Goffman 1959). Including viewer comments could also reveal information about the temporal currency that vlogs and vloggers have. That is, does the vlogger body have an Internet shelf life that is instigated by vlogger engagement with users? Of course, future researchers will want to modify our purposive sampling techniques for their particular research purposes. In consideration of the dense and meaty nature of vlogs, possible scholarly investigations are many and diverse, leaving room for creative approaches that we have not explored here. While we do not anticipate being transformed into Luddites overnight, some caveats are in order regarding the fluid nature of technology as we close our chapter. We recognize that even as we set forth this template, our guidelines may quickly begin to ossify or be carried away by the swift current of technological advancement. For instance, visible and conceptual changes in website layout may render some of our advice about building a sampling frame irrelevant. Additionally, changes that may be less apparent and visible to users, such as modifications in the algorithmic function of a search engine, could also change the nature of searching for and finding thematically related videos. Our work has relied on YouTube vlogs, but we acknowledge that videos are uploaded and shared via

102   Natalie Kay Fullenkamp other mediums and online platforms. YouTube now maintains a dominant hold as the platform of choice for vlog uploads, but its status could easily change. Video content could migrate to other sites, making, say, Facebook or some yet-to-be- developed platform a better source of vlog data than YouTube in the future. Given these limitations, we have laid out our methodological framework in the spirit of transparency and with the aim that the logic we set forth here is of use to future research using vlog content.

Notes 1. Since we conducted this research, the FDA acknowledged a rare cluster of side-effects associated with fluoroquinolones. The agency has not, however, included formal warnings about what it has called fluoroquinolone-associated disability (FQAD). 2. Barker has studied illness narratives on two popular online illness forums. Painting in broad strokes, a difference between floxie illness narratives that are represented in a textual form from those which we studied on YouTube is the performative spectacle of suffering. 3. There are methods primers for analyzing videos in naturally occurring social settings (e.g., shopping malls, museums, medical clinics) (Heath, Hindmarsh, and Luff 2010; Knoblauch et al. 2006). Given that vlogs include only one performer, we did not find these to be the right (methodological) tool for our purposes.

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YouTube Vlogs as Illness Narratives   103 Charmaz, Kathy. 1991. Good Days, Bad Days: The Self in Chronic Illness and Time. New Brunswick, NJ: Rutgers University Press. Charmaz, Kathy. 2006. Constructing Grounded Theory: A Practical Guide through Qualitative Research. Thousand Oaks, CA: Sage. Chou, Wen-Ying Sylvia, Yvonne Hunt, Anne Folkers, and Erik Auguston. 2011. “Cancer Survivorship in the Age of YouTube and Social Media: A Narrative Analysis.” Journal of Medical Internet Research 13, no. 1: 108–116. Cohen, Jay. 2001. “Peripheral Neuropathy Associated with Fluoroquinolones.” Annals of Pharmacotherapy 35, no. 12: 1540–1547. Conrad, Peter, and Cheryl Stults. 2010. “The Internet and the Experience of Illness.” In Handbook of Medical Sociology, edited by Chloe Bird, Peter Conrad, Anne Fremont, and Stefan Timmermans, 179–191. Nashville, TN: Vanderbilt University Press. Conrad, Peter, and Kristin Barker. 2010. “The Social Construction of Illness: Key Insights and Policy Implications.” Journal of Health and Social Behavior 51: S67–S79. Creswell, John, and Cheryl Poth. 2018. Qualitative Inquiry and Research Design: Choosing among Five Approaches. 4th ed. Los Angeles: Sage. Dumit, Joseph. 2006. “Illnesses You Have to Fight to Get: Facts as Forces in Uncertain, Emergent Illnesses.” Social Science & Medicine 62, no. 3: 577–590. Foster, Drew. 2016. “ ‘Keep Complaining til Someone Listens’: Exchanges of Tacit Healthcare Knowledge in Online Illness Communities.” Social Science & Medicine 166: 25–32. Frank, Arthur. 1995. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press. Gimlin, Debra. 2007. “What Is ‘Body Work’? A Review of the Literature.” Sociology Compass 1: 353–370. Goffman, Erving. 1959. The Presentation of Self in Everyday Life. New York: Anchor Books. Goffman, Erving. 1961. Asylums: Essays on the Social Situation of Mental Patients and Other Inmates. New York: Double Day. Greco, Monica. 2012. “The Classification and Nomenclature of ‘Medically Unexplained Symptoms’: Conflict, Performativity, and Critique.” Social Science & Medicine 75, no. 12: 2362–2369. Harris, Anna, Susan Kelly, and Sally Wyatt. 2014. “Autobiologies on YouTube: Narratives of Direct-to-Consumer Genetic Testing.” New Genetics and Society 33, no. 1: 60–78. Heath, Christian, Jon Hindmarsh, and Paul Luff. 2010. Video in Qualitative Research: Analyzing Social Interaction in Everyday Life. Thousand Oaks, CA: Sage. Horak, Laura. 2014. “Trans on YouTube: Intimacy, Visibility, Temporality.” Transgender Studies Quarterly 1, no. 4: 572–585. Huh, Jina, Leslie Liu, Tina Neogi, Kori Inkpen, and Wanda Pratt. 2014. “Health Vlogs as Social Support for Chronic Illness Management.” ACM Transactions on Computer-Human Interaction 21, no. 4: 2–31. Jurecic, Anne. 2012. Illness as Narrative. Pittsburgh: University of Pittsburgh Press. Kleinman, Arthur. 1988. The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books. Knoblauch, Hubert, Bernt Schnettler, Jürgen Raab, Hans-Georg Soeffner, eds. 2006. Video Analysis Methodology and Methods: Qualitative Audiovisual Data Analysis in Sociology. New York: Peter Lang. Leder, Drew. 1990. The Absent Body. Chicago: University of Chicago Press.

104   Natalie Kay Fullenkamp Leder, Drew. 2016. The Distressed Body: Rethinking Illness, Imprisonment, and Healing. Chicago: University of Chicago Press. Liu, Leslie, Jina Huh, Tina Neogi, Kori Inkpen, and Wanda Pratt. 2013. “Health VloggerViewer Interaction in Chronic Illness Management.” Proceedings of the SIGCHI Conference on Human Factors in Computing Systems 2013: 49–58. Madathil, Kapil Chalil, A. Joy Rivera-Rodriguez, Joel Greenstein, and Anand Gramopadhye. 2015. “Healthcare Information on YouTube: A Systematic Review.” Health Informatics Journal 21, no. 3: 173–194. Molyneux, Heather, Susan O’Donnell, Kerri Gibson, and Janice Singer. 2008. “Exploring the Gender Divide on YouTube: An Analysis of the Creation and Reception of Vlogs.” American Communication Journal 10, no. 2: 1–14. Raun, Tobias. 2016. Out Online: Trans Self-Representation and Community Building on YouTube. New York: Routledge. Riessman, Catherine Kohler. 1990. “Strategic Uses of Narrative in the Presentation of Self and Illness: A Research Note.” Social Science & Medicine 30, no. 11: 1195–1200. Riessman, Catherine Kohler. 2008. Narrative Methods for the Human Sciences. Thousand Oaks, CA: Sage. Ritchie, Jane, and Jane Lewis. 2003. Qualitative Research Practice: A Guide for Social Science Studies and Researchers. Thousand Oaks, CA: Sage. Saldaña, Johnny. 2015. The Coding Manual for Qualitative Researchers. Thousand Oaks, CA: Sage. Schneider, Joseph, and Peter Conrad. 1983. Having Epilepsy: The Experience and Control of Illness. Philadelphia: Temple University Press. Spencer, Liz, Jane Ritchie, and William O’Connor. 2003. “Analysis: Practice, Principles, and Processes.” In Qualitative Research Practice: A Guide for Social Science Studies and Researchers, edited by Jane Ritchie and Jane Lewis, 199–218. Thousand Oaks, CA: Sage. Timmermans, Stefan, and Iddo Tavory. 2012. “Theory Construction in Qualitative Research: From Grounded Theory to Abductive Analysis.” Sociological Theory 30, no. 3: 167–186. Weber, Robert. 1990. Basic Content Analysis. 2nd ed. Newbury Park, CA: Sage. Williams, Gareth. 1984. “The Genesis of Chronic Illness: Narrative Re-construction.” Sociology of Health & Illness 6, no. 2: 175–200. Wilmot, Amanda. 2005. “Designing Sampling Strategies for Social Qualitative Research: With Particular Reference to the Office for National Statistics’ Qualitative Respondent Register.” https://wwwn.cdc.gov/qbank/Quest/2005/Paper23.pdf.

chapter 7

R epr esen tations of Fat n ess by Ex perts a n d the M edi a a n d How This Sh a pe s At tit u de s Abigail C. Saguy

Talk of body weight is inescapable. In a typical day, you may open the newspaper to read about a new study examining what causes weight gain and why “obesity rates” are so high in the United States and other wealthy nations. On the car ride to your annual physical exam, you may tune in to National Public Radio (NPR) and catch a “This American Life” episode about women who decide to “come out as fat” by embracing their “fatness” as an integral part of their identity and to speak out against “fat phobia” (Glass 2016). In the waiting room, you may even stumble upon articles about the evils of “fat shaming,” about how women are beautiful at all sizes, or about how one can be “healthy at every size.” The first thing the nurse will have you do, however, is get on a scale and then calculate your body mass index (BMI)—weight in kilograms divided by height in meters squared. If your BMI falls above 25—the cut-off for “overweight”—you can expect a lecture on how to manage your weight. If it falls above 35, your doctor may suggest that you consider weight-loss surgery or even imply that whatever ailments you may be currently suffering—sore knees? sore throat? infertility?—are due to your elevated weight. In the course of this day, you will have been exposed to several competing “fat frames,” including fatness as a form of diversity and a basis for discrimination and fatness—or “obesity”—as a medical problem and public health crisis. The extent to which you are exposed to each of these frames depends on the power and influence of those promoting them. While public health authorities and the pharmaceutical-funded International Obesity Task Force promote medical and public health crisis frames, a small “fat acceptance movement” struggles to counter these

106   Abigail C. Saguy ­ essages with a “fat rights frame” (Saguy 2013). Meanwhile, researchers questioning m received wisdom about the obesity epidemic struggle to get their research funded (Saguy 2013). When the news media report on research findings that show health benefits of having a BMI in the overweight or obese range, they often question its validity (Saguy 2013). In contrast, the news media report on research on the hazards of excess weight without skepticism (Saguy 2013). The dominant frames—that fatness is a medical problem and public health crisis—seem obvious, even incontrovertible. This chapter examines what we have learned over the past decade and more about (1) what I (Saguy and Riley 2005), following Epstein (1996) have called “framing contests” over fatness; (2) how the news media frame fatness; and (3) the effects of these frames on social inequality and health policy. After reviewing major findings from these three closely related areas of research, this chapter discusses future areas of research.

Literature The concept of framing was first developed, over 40 years ago, by Canadian-born sociologist Erving Goffman (1974), who showed how people use conceptual frames—or definitions of situations—to organize their experiences and guide their action. Later, researchers expanded Goffman’s concept of frame to examine how social movements strategically define issues in particular ways to “mobilize potential adherents and constituents, to garner bystander support, and demobilize antagonists” (Snow and Benford 1988, 198). Communication scholars have used the concept of framing to show how news media reports construct and promote particular ways of framing social problems, which in turn have important implications for which solutions appear feasible and legitimate (Entman 1989). In my research, I have used the concept of framing to shed new light on contemporary debates over corpulence. In a first line of inquiry, I examined how researchers and activists compete to frame fatness as either a medical problem and public health crisis or, alternatively, as a form of body size diversity that can be healthy but is, unfortunately, stigmatized and forms a basis of discrimination (Saguy and Riley 2005). Building on this early work, Samantha Kwan extended the analysis of framing contests to include food industry lobbyists (Kwan 2009). My 2013 book (Saguy 2013) and Kwan’s coauthored 2013 book further expanded analyses of framing contests over fatness (Kwan and Graves 2013). Related to but distinct from questions of how individual people and groups compete to frame fatness is the question of how the news media have framed fatness. As early as 2004, political scientist Regina Lawrence found that the news media, while increasingly emphasizing environmental causation of “obesity,” nonetheless persist in stressing personal responsibility (Lawrence 2004), a finding that also emerged from later news media analyses (Boero 2007). Subsequent comparative media analysis examined how US news

Representations of Fatness by Experts and the Media   107 reporting on “overweight” and “obesity” differs from news reporting in other countries (Saguy, Gruys, and Gong 2010) and from reporting on anorexia and bulimia (Saguy and Gruys 2010). Other work examined how the US news media translates obesity research into news (Saguy and Almeling 2008) and how it evaluates different kinds of scientific claims about the health risks of “obesity” (Saguy 2013). Research on framing contests and news media framing is motivated by the belief that the way public authorities and the news media discuss body weight matters. A growing body of research has used experimental methods to test this underlying assumption, finding that exposure to different fat frames shapes people’s attitudes about health, health policy, and anti-fat stigma (Barry et al.  2009; Daníelsdóttira, O’Brien, and Ciao 2010; Frederick et al. 2016; Frederick, Saguy, and Gruys 2016; Gollust, Niederdeppe, and Barry 2013; Lee, Ata, and Brannick 2014; Saguy, Frederick, and Gruys 2014).

Methods Research on “fat frames” is part of a broader intellectual movement that critically examines prevailing social understandings of body weight—a field commonly referred to as “fat studies” (Cooper 2010; Rothblum and Solovay 2009). Much of this work has used ethnography and/or interviews to examine how people negotiate fat stigma and thin privilege in everyday interactions (e.g., Colls  2006; Degher and Hughes  1999; Gerber 2011; Gruys 2012; Monaghan 2007). In contrast, much of the research on framing relies on interviews with various experts, as well as textual analysis of news media reports, public health statements, and other published or unpublished material. Researchers have also designed experiments to try to assess the way exposure to various frames shapes attitudes. In my own approach to these questions, I have adapted a tripartite approach to culture (Griswold 1987), considering (1) the production of culture (in this case, ideas about fatness), (2) cultural texts themselves (including scientific articles and news reports), and (3) the way in which cultural texts are received, or interpreted. Whereas much work in cultural studies assumes that the meaning of texts, such as magazines, newspaper reports, novels, or film, is self-evident, cultural sociologists recognize that different people can interpret the same texts in different ways (Hunt 1999). Cultural sociologists seek to understand the social processes that produce particular accounts. To get at the ways in which particular accounts of fatness are produced, I interviewed researchers, activists, journalists, and publicists. I also conducted participant observation at fat acceptance conferences and on list servers. I informally spoke to and corresponded via e-mail with scores of additional researchers and activists to clarify specific points. As part of studying the content of these messages, I examined hundreds of journal articles, books, official documents, and news articles. To capture how different accounts of fatness are received, I asked interview respondents how they interpret and are affected by dominant and challenging accounts of fatness. In addition, social

108   Abigail C. Saguy ­ sychologist David Frederick and I designed several controlled experiments with adults p and college students to see how reading specific news accounts of fatness affected the way they responded to questions about health risks, health policy, and weight-based ­discrimination and stigma.

Formal Interviews At the start of interviews, I presented respondents with an “information sheet” that explained their rights as “human subjects,” including that they were not obligated to answer my questions and could end the interview at any time. The sheet also contained information about the purpose of the study, interview procedures, potential benefits of the research to society, that there would be no payment for participation, and that, if they were to choose to do so, all information in the interview would be kept confidential. Respondents also had the option of being identified, which was the preference of many, given their status as public figures.

News Media Sampling I analyzed several news media samples. The first three were drawn from news articles and opinion pieces of more than 300 words published in The New York Times, Newsweek, Le Monde, or L’Express that had the words obese/obesity, overweight/obesity, anorexia/anorexic, or bulimic/bulimia in the heading or lead paragraphs. This generated four separate samples. My students and I focused on two comparisons: (1) US versus French reporting on overweight/obesity and (2) US reporting on obesity/overweight versus US reporting on eating disorders. While limited to four news outlets over 10 years, these samples allowed for the examination of how the elite US and French news media discuss fat bodies over time. There is a consistently moderate level of press attention to eating disorders over this time period. The year 1995 is the first year that a sizable number of articles on obesity were published in France. The chosen publications have the methodological advantage of being available on LexisNexis for the entire 1995–2005 time period and of maximizing crossnational comparability. The New York Times and Le Monde are comparable in their readership and reputation as leading national newspapers of record. Similarly, Newsweek and L’Express are comparable leading mainstream newsmagazines (Saguy 2002, 2003). To manage the high volume of articles on overweight/obesity published in The New York Times, I eliminated the first two of every three articles in the chronological The New York Times list of articles, reducing this sample by two-thirds. To measure the extent to which this sampling strategy may bias our results, I analyzed the newspaper and newsmagazine articles separately, finding that the general patterns hold up for both. I also eliminated articles that were fewer than 300 words, since it is difficult to develop the

Representations of Fatness by Experts and the Media   109 themes of interest in such a short article, which reduced the sample further by more than one-half. Finally, I eliminated the few articles from the full sample that were completely off topic. This yielded a final sample of 262 US articles and 108 French articles on overweight/obesity, including 174 from The New York Times, 88 from Newsweek, 86 from Le Monde, and 22 from L’Express. This sampling strategy produced 70 US articles on anorexia/bulimia, including 64 from The New York Times and 6 from Newsweek. I did not systematically analyze the 17 French articles on anorexia or bulimia. Two theme issues on obesity published in the Journal of the American Medical Association (JAMA) in 1999 and in 2003 provided the basis for a second pair of news media samples. This design allowed me to examine which sorts of articles receive the most news media coverage. The ten major research reports and editorials in each theme issue were also coded using the same coding protocol, allowing for systematic comparisons between the original scientific studies and news reports. With help from student research assistants, and after experimenting with different search terms, I searched the LexisNexis database for all news articles published in the 3 months after the publication of each JAMA issue that fulfilled the following search criteria: they contained the word obesity or the word weight and the three consecutive words American Medical Association anywhere in the full text. I limited the search to the following LexisNexis categories: General News, World News, News Wires, Business News, Legal News, University News, and Medical News. I excluded articles with fewer than 500 words and peer-reviewed journal articles, generating a final news sample of 128 news articles, including 69 on the 1999 issue and 59 on the 2003 issue. The sample was heavily weighted toward the General News category (N = 66), followed by the News Wires category (N = 24) and Business News (N = 21). Relatively few articles fell into the World News (N = 8), Medical News (N = 5), and University News (N = 4) categories, biasing the sample toward US news. At 500 words or more, they are a bit longer than the articles in the three samples discussed earlier. They also include a wider range of publications. Finally, I analyzed two media samples representing news coverage of two specific scientific studies. The first, “Actual Causes of Death in the United States, 2000,” was published in 2004 (Mokdad et al. 2004). I refer to this as the Eating-to-Death study. The second study, “Excess Deaths Associated with Underweight, Overweight, and Obesity,” which I refer to as the Fat-OK study, was published in 2005 (Flegal et al. 2005). Searching the Business and Finance, Industry News, Major Papers, Magazine and Journals, Medical and Health News, All Available News Wire reports, and University Wire sources of LexisNexis, I identified all articles published within 3 months of the research study that included the term obesity and either the first author’s last name or both CDC and American Medical Association anywhere in the full text. Only news reports that actually discussed the article in question and were 500 words or more were retained. This produced a sample of thirty-five news reports on the Eating-to-Death study and sixty-one reports on the Fat-OK study. This pair of samples allowed me to examine how the news media differently represent competing claims about obesity-related health risk, published by equally reputable scientists in equally reputable journals.

110   Abigail C. Saguy

News Media Coding All of the news articles were coded for about 200 different variables or themes. I used a slightly different coding schema for the national and issue comparative news samples, on one hand, compared to the science reporting news samples, on the other. In initial “practice” coding, three researchers coded the same articles and discussed differences as a way of arriving at shared agreement. Two coders coded 10 percent of the articles to test for intercoder reliability, which was very high. The coefficient of reliability (the ratio of coding agreements to the total number of coding decisions) was more than 0.95 (Holsti 1969). In almost all cases coding required noting simply whether or not a particular aspect was mentioned at all. Using the program Microsoft Access, we entered a “1” when the aspect in question was mentioned by the journalist or a news source or a “0” if it was not mentioned. We later imported these numbers into statistical software for analysis. For instance, if the article suggested that obesity was caused by biological factors, even if it also discussed other causal factors, that article would be coded as “1” for biology. If it did not discuss biological factors, it would be coded as “0” for biology. Each article could be coded as “1” on several variables. In other words, codes are independent of one another. Coders were not asked to determine which themes dominated the article, only if they were present at all. Doing this kind of systematic coding is tedious and time consuming. Yet it allows one to systematically quantify broad patterns that are likely to be missed in a more informal reading. By reading a lot of scientific studies and news articles, one can get a sense of general patterns, but this kind of reading is likely to be influenced by selective attention to details that confirm our preexisting expectations. The systematic coding that my research assistants and I did kept us honest, in that it forced us to ask the same questions of each article and to use the same criteria in answering those questions. Based on the reading I had done and interviews I had conducted, I developed several codes. For instance, I coded each article for whether or not it suggested that obesity/ overweight was a public crisis or represented an epidemic. I also coded articles for whether they discussed weight-based discrimination or whether it was possible to be fat and healthy. To evaluate how scientific and news reports assign blame, I coded articles for whether they emphasized personal responsibility, sociocultural factors, or biological factors as causing obesity. For instance, the following article blames an individual man for his weight gain, writing “he could look back on decades of binge eating and failed diets,” and quoting him as saying, “I was killing myself ” (Feder 2005). The following would be taken as evidence of blaming sociocultural factors: “In many low-income minority neighborhoods, fried carryout is a cinch to find, but affordable fresh produce and nutritious food are not” (New York Times 2002). Cultural factors, including mainstream cultural emphasis on thinness, ethnic culinary practices, or cultural attitudes toward body size, were treated as a subset of sociocultural factors. This means that any article coded as 1 for cultural factors was also coded as 1 for sociocultural factors.

Representations of Fatness by Experts and the Media   111 Finally, to account for how, and to what extent, these issues are associated with certain groups, I coded articles for whether they explicitly mentioned specific demographic groups, including men or women; the poor, middle class, or rich; and whites, blacks, Latinos, Asians, and other races. During analyses, I computed composite variables, including “Blacks, Latinos, or the Poor.” Using statistical software, my students and I calculated the frequency that given variables are mentioned in particular articles. My students and I also coded news coverage of the Eating-to-Death and Fat-OK studies for whether they quoted outside researchers who contested the study’s validity or outside researchers who were supportive of the study’s findings. We also coded these articles for whether they suggested that the study confirmed what was already known and for whether the study’s findings were treated as surprising. In addition to the quantitative analysis, I used discourse analysis to get at the subtleties of news reports, including the choice of words and ideologies evident in news reports (Lupton 1994). I created theme sheets that included lengthy quotes that illustrated key themes, such as blame, responsibility, and moral judgment. The quantitative data allow us to test for statistical significance of differences in reporting across these issues, while the qualitative data permit us to dig deeper into the nuances of reporting.

Experiments To measure how exposure to different news media frames shapes attitudes about health, health policy, and weight-based discrimination, I conducted a series of controlled experiments with David Frederick and other collaborators. Depending on the experiment, we recruited participants on Craigslist (Saguy, Frederick, and Gruys  2014), Amazon’s Mechanical Turk (Frederick et al. 2016), or in university classroom settings (Frederick et al.  2016; Frederick, Saguy, and Gruys  2016; Saguy, Frederick, and Gruys 2014). In each experiment, participants received 5–8 minutes to read a news article that discussed fatness or a control article that did not. In some of the experiments, participants read actual news articles, which were edited only slightly (Frederick, Saguy, and Gruys 2016; Saguy, Frederick, and Gruys 2014). This maximized “external validity,” or the extent to which our findings apply to real-world situations. In other studies, participants read constructed articles (Frederick et al. 2016), maximizing “internal validity” or control of the experimental conditions. Whether real or constructed, news articles invoked a variety of frames, including public health crisis, health at every size, fat rights, personal blame, and biological determinism. After reading the news article, participants responded to a series of questions about the health risks associated with elevated body weight, health policy, and anti-fat prejudice and discrimination. Most often, we used a between-subject design, comparing how participants responses to attitudinal questions varied based on which news article they read (Frederick et al. 2016; Saguy, Frederick, and Gruys 2014). In one study, we also conducted a series of Mixed ANOVAS, with Article Type as the between-subjects in­de­ pend­ent variable and attitudes at Baseline versus attitudes at Post-Exposure as the

112   Abigail C. Saguy within-subjects independent variable, to test whether participants changed their attitudes after reading the articles (Frederick, Saguy, and Gruys 2016).

Key Findings In my early research on framing contests over fatness (Saguy and Riley 2005), I showed how “anti-obesity” researchers and activists and “fat acceptance” researchers and activists engage in framing contests over the nature and consequences of excess body weight. While “anti-obesity” researchers and activists frame higher body weight as a risky behavior akin to smoking and an epidemic, fat acceptance activists and researchers frame fatness as a natural and largely inevitable form of diversity. Fat acceptance activists and researchers argue that the focus on the “obesity epidemic” is wrongheaded and that more attention need to be paid to other weight-related social problems—including sedentary lifestyle and poor nutrition rather than body weight per se, weight-loss treatments, weight obsession, and anti-fat bias and discrimination on the part of health professionals. Drawing on Epstein (1996), I showed how, in debates over body weight and health, assessments of scientific credibility tend to focus on claimants, not just their claims. While all claimants appeal to academic prestige to affirm their own credibility and that of others in their camp, anti-obesity researchers and activists also question the academic standing of their most visible opponents. Fat acceptance activists cite their personal experiences with weight-loss treatments and fat prejudice as a form of expertise, while pointing to the fact that many anti-obesity researchers are funded by the weight-loss industry to discredit them. In turn, anti-obesity researchers and activists suggest that fat acceptance activists are simply making excuses for personal failings. In later work (Saguy 2013), I expanded my analysis of the “fat field”—a sphere of contestation over the meaning of fatness—to include, for instance, the Centers for Disease Control and Prevention (CDC), World Health Organization (WHO), National Institutes of Health, pharmaceutical companies that produce weight-loss drugs, lobbies funded by pharmaceutical companies, WeightWatchers, The Center for Consumer Freedom, the company Dove that has promoted body size diversity in its advertising campaigns, bariatric doctors, the Association to Advance Size Diversity and Health (ASDAH), the National Association to Advance Fat Acceptance (NAAFA), “Big Beautiful Women” magazines, fat acceptance blogs, and fat pornography (see also Kwan 2009; Kwan and Graves 2013). Using Pierre Bourdieu’s concept of field analysis (Bourdieu 1988), I showed how these organizations differ in how much social capital they possess and whether their social capital—which translates into influence and power—is more economic or symbolic. The fact that those promoting claims about the dangers of obesity have significant economic power (e.g., Hoffmann-La Roche, Weight Watchers, the International Obesity Task Force) and symbolic authority (e.g., CDC, WHO, doctors) than those challenging these claims (e.g., fat acceptance organizations

Representations of Fatness by Experts and the Media   113 and associations combatting eating disorders) helps explain why the idea that obesity represents a major public health crisis dominates public discourse. In subsequent work with Rene Almeling, drawing on a paired sample of two special issues on obesity in the Journal of the American Medical Association (JAMA) and news media reporting on the articles in each of these special issues, I showed that news media reporting further contributes to the dominance of the public health crisis framing of obesity by dramatizing studies on which they report (Saguy and Almeling 2008). Thus, the news media refer to the “obesity epidemic,” “the war on obesity,” and childhood obesity as a “time bomb,” even when the underlying study does not use such language. In later research, I showed that the news media scrutinize more closely research findings that question the dominant public-health-crisis framing of obesity, compared to research findings that reaffirm this dominant frame (Saguy 2013). I drew on news media reporting on two highly visible epidemiological articles that arrived at widely different estimates of the annual death toll associated with having a BMI over 25 (Flegal et al. 2005; Mokdad et al. 2004). The first—published in 2004 by CDC researchers in JAMA—estimated that there were 400,000 more deaths in the year 2000 compared to the number of deaths there would have been if everyone with a BMI of 25 or more had had a BMI in the “normal” weight range (i.e., a BMI at or above 18.5 but less than 25). I call this the “Eatingto-Death” study. The second—published by a second team of CDC researchers in JAMA—estimated the excess number of deaths associated with having a BMI over 25 as less than 26,000 (Flegal et al. 2005). I call this the “Fat-OK” study. There were several differences in methodology between the two studies, including the samples used (nonrepresentative in the Eating-to-Death study, representative in the Fat-OK study), statistical controls for gender, smoking, and age (done incorrectly in the Eating-to-Death study, correctly in the Fat-OK study), and reference category used (BMI of 23 to less than 25 in the Eating-to-Death study, full “normal weight” category of BMI 18.5 to less than 25 in the Fat-OK study). The CDC (2005) ultimately recognized the Fat-OK study as the better estimate. This was hard to square, however, with news media reporting on the two studies. The news media discussed the Eating-to-Death study as if it confirmed what we already knew— that people are eating themselves to death. In contrast, news reports suggested that the Fat-OK study was surprising, even though it was actually consistent with a large body of epidemiological literature showing that risk of mortality follows a U-shape curve, with lowest risk in the middle of the distribution (which, in the United States, falls in the overweight range) and highest risk at the high and low extremes of BMI. Specifically, 30 percent of reports on the Fat-OK study—but none of the news reports on the Eating-to-Death study, quoted outside researchers contesting the study’s validity. For instance, one news report quoted anti-obesity researcher JoAnn Manson dismissing the research findings and reaffirming the assertion that obesity is indeed a deadly epidemic: “ ‘We really can’t afford to become complacent about this epidemic of obesity and certainly not based on findings from an analysis that is flawed’ ” (Marchione  2005). Manson and her colleague Walter Willett held a one-day conference on May 26, 2005, dedicated to criticizing the Fat-OK study and conducted a poll showing that

114   Abigail C. Saguy t­ hree-fourths of Americans “rate obesity as an ‘extremely’ (34 percent) or ‘very’ (41 percent) serious public health problem in the United States.” The news media reported on the conference and on the poll, which showed that “the majority of Americans believe that scientific experts have been portraying accurately (58 percent) or even underestimating (22 percent) the health risk of being obese” and that “very few Americans reported believing that the health risks were being overestimated by scientific experts (15 percent)” (AScribe Newswire 2005). In other words, influential researchers like Manson and Willett intentionally and strategically cast doubt on the Fat-OK study in the news media. Moreover, as I argued in my book, the fact that the Fat-OK study was subject to greater skepticism than the Eating-to-Death study is probably also due to confirmation bias, which leads people to be less critical of evidence that supports their preconceptions and more critical of evidence that challenges them (Nikerson 1998). To the extent that both scientists and journalists are steeped in an obesity-crisis narrative, they uncritically accept evidence that is consistent with this narrative while being skeptical of findings that run counter to it. Among articles that present fatness as a medical problem and public health crisis, whom do the news media blame for this alleged problem? Earlier work had already shown that the news media, while increasingly emphasizing environmental causation of “obesity,” nonetheless persist in stressing personal responsibility (Lawrence  2004), a finding corroborated by others (Boero 2007). In the study with Rene Almeling mentioned earlier, we showed that one reason for this pattern is that the news media give disproportionate attention to studies that emphasize personal blame for weight (Saguy and Almeling 2008). Some might argue that the news media tend to emphasize personal blame in general and that one would find this pattern regardless of the issue. To test this hypothesis, Kjerstin Gruys and I analyzed an original database of American news reporting on eating disorders and overweight/obesity published between 1995 and 2005. We found that, in fact, while the media predominantly attribute “overweight” and “obesity” to bad personal choices and treat binge eating disorder as ordinary and blameworthy overeating, they typically discuss how a host of complex factors beyond personal control contribute to anorexia and bulimia. In that anorexics and bulimics are typically portrayed as young middle-class or wealthy white women or girls, this reinforces cultural images of young white female victims. In that the poor and minorities are more likely to be heavy, such reporting draws on and reinforces social stereotypes of fat people, ethnic minorities, and the poor as out of control and lazy. In order to see whether the news media’s focus on personal responsibility and blame for “overweight” and “obesity” was universal or specific to the United States, Kjerstin Gruys, Shanna Gong, and I analyzed an original sample of news reporting on “overweight” and “obesity” published between 1995 and 2005 in the United States and in France (Saguy, Gruys, and Gong 2010). Given that—compared to the United States— French public intellectuals and popular opinion tend to attribute a greater role to socialstructural factors such as economic inequality in shaping individual trajectories (Lamont 1992, 2000; Lamont and Thévenot 2000), we reasoned that the French press may also be more likely than the US press to discuss how social-structural factors ­contribute to “obesity,” and we did. Whereas only 27 percent of the US news sample

Representations of Fatness by Experts and the Media   115 ­ iscussed social structural contributors to “overweight” and “obesity,” 47 percent of the d French news sample did, a difference that was statistically significant at p < .001. Moreover, my research—with David Frederick and others—on the impact of news media framing has shown that how we frame body weight matters. Drawing on five separate experiments with a total N of 2,123, we examined how reading different actual news representations of obesity research influenced attitudes about health risk, support for public health policies, and attitudes towards people labeled as unhealthy or at risk for disease (Saguy, Frederick, and Gruys 2014). We found that, in four out of seven comparisons (two experiments included two different measures of anti-fat prejudice), people who read a news article presenting a public-health-crisis frame were more likely to express anti-fat prejudice. In contrast, across all five experiments, compared to controls, participants who read an article about weight-based discrimination were less likely to agree that overweight constitutes a public health crisis or to support various obesity policies. Likewise, drawing on four experiments (N = 2,187) that had people read constructed news articles, we found that, compared to people who read articles presenting fatness positively (i.e., as health, beyond personal control, and not a legitimate basis of discrimination), people who read articles that framed fatness negatively (i.e., as unhealthy, controllable, and legitimately stigmatized) were more likely to agree that it was unhealthy to be fat, that weight is controllable, and that “obese” people should be charged more for health insurance (Frederick et al. 2016). They were also more likely than people having read a positive portrayal of fat to express anti-fat prejudice, willingness to discriminate against fat people, and unwillingness to celebrate body size diversity or to say that women at the lower end of the obese range could be healthy at their weights. This study further found that, compared with a control condition, exposure to fat-positive frames generally shifted attitudes more than fat-negative frames. Drawing on three experiments (N = 506), another 2016 study found that, compared to a control condition, participants who read articles that suggested that people can be healthy at any size or condemned weight-based discrimination were less likely to express belief in the health risks of obesity or support charging fat people more for health insurance (Frederick, Saguy, and Gruys 2016). Only those who read an article condemning weight-based discrimination and advancing a fat rights frame, however, were less likely to express anti-fat attitudes and more willingness to celebrate body size diversity. Together, this research suggests that the steady drumbeat of news reporting on the so-called obesity epidemic—which tends to emphasize personal blame and responsibility—may be worsening anti-fat stigma and discrimination. It further suggests that more public condemnation of weight-based discrimination could potentially alleviate anti-fat stigma and discrimination.

Discussion and Conclusion In conclusion, research on framing fat has shown that the way we discuss fatness—as, say, a medical problem, public health crisis, or illegitimate basis of

116   Abigail C. Saguy ­ iscrimination—is an outcome of credibility struggles among researchers, activists, d and others. The news media, in turn, rely heavily on some of these frames—including the public health crisis and personal responsibility frames—while more rarely giving voice to others, such as the health at every size or fat rights frame. And this matters, since experimental studies suggest that people who read articles expressing the ­public health crisis or personal responsibility frames are more likely to express more  anti-fat stigma and to say that discrimination against fat people is justified, compared  to those who do not, whereas people who read an article presenting a fat rights frame are less likely to express anti-fat stigma or condone weight-based discrimination. These findings have implications for studies of the body more generally. Just as credibility struggles shape our understandings of fat—or thin—bodies, so they inform our understanding of disability/ability, race and ethnicity, and sex/gender, all bodily differences that are politicized and associated with social inequality (Lunt and Thornton 1994). Likewise, news reporting mediates such debates, shaping which voices are heard and discussions of bodies more generally (Bystrom, Robertson, and Banwart  2001; Haller  2006; Poindexter, Smith, and Heider  2003). As with body size, news media reporting is likely to inform attitudes about other bodily differences (Terkildsen and Schnell 1997). There is more work to be done in this area. For instance, whereas the extant literature on news media framing has used relatively small samples and a mix of quantitative and qualitative coding, some younger scholars are exploring the use of big data to ask similar questions. For instance, in a UCLA MA paper, Alina Arseniev-Koehler uses the new machine-learning method Word2Vec to quantify cultural associations in news reporting on “obesity.” Using Word2Vec models on a database of 103,581 New York Times articles from 1980 to 2016, Arseniev-Koehler has shown that New York Times news reports typically associate “obesity” with femininity, immorality, poor health, and low socioeconomic class. She has found that word “obese” is as feminized as “slender” and that health-related words in general tend to be feminized. These findings lend support to popular concerns that machine-learned algorithms may encode and reproduce negative cultural associations. Given previous research in cultural sociology showing how the reception of media or other texts is shaped by preexisting worldviews that vary by social factors like race (Hunt 1999), future work should replicate the experimental research discussed earlier with large community samples that permit a robust comparison by race. The issue of weight is not only racialized (Thompson 1994) but profoundly gendered and classed as well (Fikkan and Rothblum 2011; Saguy 2012), further suggesting the value of replicating previous studies in a sample that allows for comparisons by ethnicity, socioeconomic status, and gender of both the people participating in the study and also those depicted in the studies. It is also important that the research results discussed here be widely disseminated. Hopefully, greater awareness of the importance of fat frames and their effects will lead politicians, researchers, journalists, and others to be more self-reflective when discussing body size.

Representations of Fatness by Experts and the Media   117

References AScribe Newswire. 2005. “Despite Conflicting Studies about Obesity, Most Americans Think Problem Remains Serious, Do Not Believe Scientific Experts Are Overestimating Health Risks.” AScribe Newswire, July 14, 2005. https://www.highbeam.com/doc/1G1-134016143 .html. Barry, Colleen L., Victoria L. Brescoll, Kelly D. Brownell, and Mark Schlesinger. 2009. “Obesity Metaphors: How Beliefs about the Causes of Obesity Affect Support for Public Policy.” Milbank Quarterly 87, no. 1: 7–47. Boero, Natalie. 2007. “All the News That’s Fat to Print: The American ‘Obesity Epidemic’ and the Media.” Qualitative Sociology 30, no. 1: 41–60. Bourdieu, Pierre. 1988. Homo Academicus. Translated by P.  Collier. Stanford, CA: Stanford University Press. Bystrom, Dianne G., Terry A. Robertson, and Mary Christine Banwart. 2001. “Framing the Fight: An Analysis of Media Coverage of Female and Male Candidates in Primary Races for Governor and U.S. Senate in 2000.” American Behavioral Scientist 44, no. 12: 1999–2013. CDC. 2005. “Frequently Asked Questions about Calculating Obesity-Related Risk”. https:// www.cdc.gov/media/pressrel/r050615.htm. Colls, Rachel. 2006. “Outsize/Outside: Bodily Bignesses and the Emotional Experiences of British Women Shopping for Clothes.” Gender, Place and Culture 13, no. 5: 529–545. Cooper, Charlotte. 2010. “Fat Studies: Mapping the Field.” Sociology Compass 4, no. 12: 1020–1034. Daníelsdóttira, Sigrun, Kerry S. O’Brien, and Anna Ciao. 2010. “Anti-Fat Prejudice Reduction: A Review of Published Studies.” Obesity Facts 3: 47–58. Degher, Douglas, and Gerald Hughes. 1999. “The Adoption and Management of a ‘Fat’ Identity.” In Interpreting Weight: The Social Management of Fatness and Thinness, edited by J. Sobal and D. Maurer, 11–27. New York: Aldine de Gruyter. Entman, Robert. 1989. Democracy without Citizens: Media and the Decay of American Politics. New York: Oxford University Press. Epstein, Steven. 1996. Impure Science: Aids, Activism, and the Politics of Knowledge. Berkeley: University of California Press. Feder, Barnaby  J. 2005. “One Alternative: A Ring That Squeezes the Stomach.” New York Times, C2. Fikkan, Janna L., and Esther Rothblum. 2011. “Is Fat a Feminist Issue? Exploring the Gendered Nature of Weight Bias.” Sex Roles 66, no. 9: 575–592. doi:10.1007/s11199-011-0022-5. Flegal, K. M., B. I. Graubard, D. F. Williamson, and M. H. Gail. 2005. “Excess Deaths Associated with Underweight, Overweight, and Obesity.” Journal of the American Medical Association 293, no. 15: 1861–1867. Frederick, David A., Abigail C. Saguy, Gaganyjot Sandhu, and Traci Mann. 2016. “Effects of Competing News Media Frames of Weight on Antifat Stigma, Beliefs about Weight, and Support for Obesity-Related Policies.” International Journal of Obesity 40: 543–549. Frederick, David A., Abigail C. Saguy, and Kjerstin Gruys. 2016. “Culture, Health, and Bigotry: How Exposure to Cultural Accounts of Fatness Shape Attitudes about Health Risk, Health Policies, and Weight-Based Prejudice.” Social Science & Medicine 165: 271–279. Gerber, Lynne. 2011. Seeking the Straight and Narrow. Chicago: University of Chicago Press. Glass, Ira. 2016. “This American Life.” In Tell Me I’m Fat, edited by I. Glass. Chicago: WBEZ. Goffman, Erving. 1974. Frame Analysis: An Essay on the Organization of Experience. New York: Harper.

118   Abigail C. Saguy Gollust, Sarah E., Jeff Niederdeppe, and Colleen L. Barry. 2013. “Framing the Consequences of Childhood Obesity to Increase Public Support for Obesity Prevention Policy.” American Journal of Public Health 103, no. 11: e1–e7. Griswold, Wendy. 1987. “A Methodological Framework for the Sociology of Culture.” Sociological Methodology 17: 1–35. Gruys, Kjerstin. 2012. “Does This Make Me Look Fat?: Aesthetic Labor and Fat Talk as Emotional Labor in a Women’s Plus-Size Clothing Store.” Social Problems 59, no. 4: 481–500. Haller, Beth. 2006. “Media Labeling Versus the Us Disability Community Identity: A Study of Shifting Cultural Language.” Disability & Society 21, no. 1: 61–75. Holsti, Ole R. 1969. Content Analysis for the Social Sciences and Humanities. Reading, MA: Addison-Wesley. Hunt, Darnell. 1999. O.  J.  Simpson Facts and Fictions: News Rituals in the Construction of Reality. Cambridge, UK: Cambridge University Press. Kwan, Samantha. 2009. “Framing the Fat Body: Contested Meanings between Government, Activists, and Industry.” Sociological Inquiry 79, no. 1: 25–50. Kwan, Samantha, and Jennifer Graves. 2013. Framing Fat: Competing Constructions in Contemporary Culture. Brunswick, NJ: Rutgers University Press. Lamont, Michèle. 1992. Money, Morals and Manners: The Culture of the French and American Upper-Middle Class. Chicago: University of Chicago Press. Lamont, Michèle. 2000. The Dignity of Working Men: Morality and the Boundaries of Race, Class, and Immigration. New York: Russell Sage Foundation. Lamont, Michèle, and Laurent Thévenot. 2000. Rethinking Comparative Cultural Sociology: Repertoires of Evaluation in France and the U.S. Cambridge, UK: Cambridge University Press. Lawrence, Regina G. 2004. “Framing Obesity: The Evolution of News Discourse on a Public Health Issue.” Press/Politics 9, no. 3: 56–75. Lee, M., R. N. Ata, and M. T. Brannick. 2014. “Malleability of Weight-Biased Attitudes and Beliefs: A Meta-Analysis of Weight Bias Reduction Interventions.” Body Image 11, no. 3: 251–259. Lunt, Neil, and Patricia Thornton. 1994. “Disability and Employment: Towards an Understanding of Discourse and Policy.” Disability & Society 9, no. 2: 223–228. Lupton, Deborah. 1994. Moral Threats and Dangerous Desires: Aids in the News Media: Philadelphia: Taylor and Francis. Marchione, Marilynn. 2005. “Diet: CDC Stresses Obesity’s Woes amid Growing Criticism of Recent Study.” Associated Press, June 3, 2005. https://www.eastbaytimes.com/2005/06/03 /cdc-stresses-obesitys-woes-amid-growing-criticism-of-recent-study/. Mokdad, Ali  H., James  S.  Marks, Donna  F.  Stroup, and Julie  L.  Gerberding. 2004. “Actual Causes of Death in the United States, 2000.” Journal of the American Medical Association 291, no. 10: 1238–1245. Monaghan, Lee F. 2007. “Body Mass Index, Masculinities and Moral Worth: Men’s Critical Understandings of ‘Appropriate’ Weight-for-Height.” Sociology of Health and Illness 29, no. 4: 584–609. New York Times. 2002. “America’s Epidemic of Youth Obesity.” New York Times, November 29, A38. Nikerson, Raymond S. 1998. “Confirmation Bias: A Ubiquitous Phenomenon in Many Guises.” Review of General Psychology 2, no. 2: 175–220. doi:10.1037/1089-2680.2.2.175.

Representations of Fatness by Experts and the Media   119 Poindexter, Paula  M., Laura Smith, and Don Heider. 2003. “Race and Ethnicity in Local Television News: Framing, Story Assignments, and Source Selections.” Journal of Broadcasting & Electronic Media 47, no. 4: 524–536. Rothblum, Esther D., and Sondra Solovay, eds. 2009. The Fat Studies Reader. New York: New York University Press. Saguy, Abigail C. 2002. “Sexual Harassment in the News: The United States and France.” The Communication Review 5, no. 2: 109–141. Saguy, Abigail  C. 2003. What Is Sexual Harassment? From Capitol Hill to the Sorbonne. Berkeley: University of California Press. Saguy, Abigail C. 2012. “Why Fat Is a Feminist Issue.” Sex Roles 68, no. 9: 600–607. Saguy, Abigail C. 2013. What’s Wrong with Fat? New York: Oxford University Press. Saguy, Abigail C., and Kevin W. Riley. 2005. “Weighing Both Sides: Morality, Mortality and Framing Contests over Obesity.” Journal of Health Politics, Policy, and Law 30, no. 5: 869–921. doi:10.1215/03616878-30-5-869. Saguy, Abigail  C., David Frederick, and Kjerstin Gruys. 2014. “Reporting Risk, Producing Prejudice: How News Reporting on Obesity Shapes Attitudes about Health Risk, Policy, and Prejudice.” Social Science & Medicine 111: 125–133. Saguy, Abigail C., Kjerstin Gruys, and Shanna Gong. 2010. “Social Problem Construction and National Context: News Reporting on ‘Overweight’ and ‘Obesity’ in the U.S. and France.” Social Problems 57, no. 4: 586–610. Saguy, Abigail C., and Kjerstin Gruys. 2010. “Morality and Health: News Media Constructions of Overweight and Eating Disorders.” Social Problems 57, no. 2: 231–250. doi:10.1525 /sp.2010.57.2.231. Saguy, Abigail C., and Rene Almeling. 2008. “Fat in the Fire? Science, the News Media, and the ‘Obesity Epidemic.’ ” Sociological Forum 23, no. 1: 53–83. Snow, David A., and Robert D. Benford. 1988. “Ideology, Frame Resonance and Participant Mobilization.” International Social Movement Research 1: 197–217. Terkildsen, Nayda, and Frauke Schnell. 1997. “How Media Frames Move Public Opinion: An Analysis of the Women’s Movement.” Political Research Quarterly 50, no. 4: 879–900. Thompson, Becky W. 1994. A Hunger So Wide and So Deep: A Multiracial View of Women’s Eating Problems. Minneapolis: University of Minnesota Press.

chapter 8

Hea lth at Ev ery Size (H A ES ™ ) as a R efor m (Soci a l) Mov em en t w ithi n Pu blic H e a lth A Situational Analysis Natalie Ingraham

Introduction When approaching the social “problem” of fat bodies, we mainly hear the voices of public health and medical professionals discussing the “obesity epidemic”—the idea that American society in particular is getting larger and that this national weight gain is a health crisis. Fat activism opposes these views, arguing for body size as a civil right and identity, and against the notion that fat bodies are a problem to be solved. In this chapter, a particular embodied health movement is considered: Health at Every Size (HAES™). This movement occupies a position as an “unhappy middle” embodied social movement between public health and fat activism. HAES maintains a weight-neutral perspective on health that departs from usual weight-centered, if not weight-focused, medical models of health. HAES advocates for self and size acceptance, enhancing emotional, physical, and spiritual health without a focus on an “ideal weight,” eating based on internal cues of hunger and individual nutritional needs, the joy of movement, and an end to weight bias (Bacon 2010; Burgard 2009). This chapter shows how HAES leverages its advocates (both practitioners and scholars) and relative privileges (including education level, class, and race) and strategizes within advocates’ social worlds to support a position on body size and health more often closely aligned with activism than public health practice. A sociological examination of the HAES movement is provided, including a brief history of the movement and its key players, and a social worlds/arenas analysis that situates HAES in relation to public health, medicine, and fat politics (both fat studies and fat activism).

122   Natalie Ingraham

Health at Every Size (HAES) Healthy Weight Journal (2005–2007)

Association for Size Diversity & Health (ASDAH)

Listservs: Think Tank, Show Me the Data (SMTD)

AHELP

Fat Politics Fat Studies (books, journals, listservs, social media) NAAFA NOLOSE

APHA

HAES Professionals: Researchers, Authors, Clinicians (mental & physical health)

Civil Rights

Fat Activism

Public Health

Registered Dieticians (RDs) Obesity

Medicine

Scientific Authority

Mental Health/Psychology

Eating Disorders

LGBTQ Activism

Figure 8.1.  HAES social worlds map.

Figure 8.1 illustrates connections between the social worlds of public health, medicine, and fat politics with HAES at the center. This figure provides a framework for this chapter, which explores how HAES is situated vis-à-vis these related fields and internal critiques of HAES, with particular focus on segments that point to HAES as a reform movement within public health. In each section that follows, I detail the relationships between the primary players in this social arena: the relationship between HAES and public health, between HAES and fat politics, and the contentious relationship between fat politics and public health. HAES is situated purposively in the map as overlapping with both public health and fat politics and as an extension of these two social worlds. I show how HAES acts as a social movement in its work and, in particular, as an embodied health social movement focused on the body and shifting medical practices. In my conclusions, I return to the social movements literature to discuss how HAES’s position as a reform movement within public health is a strategic position that should be both critiqued and upheld because it is doing the hard but necessary work of shifting public health to think differently about body size.

Background: Framing Fatness (and Obesity) Social and cultural framing of fatness and large body sizes has increased substantially in the last 30 years (Cooper 2016). Both HAES and fat activism emerged at times when scholars and activists wanted a different way to understand the fat body beyond the obesity framework offered by mainstream public health or medical authorities. The research

Health at Every Size (HAES™)   123 that emerged from this desire to shift understandings of the fat body addresses the social meanings of fatness and the obesity epidemic using quantitative analysis (Puhl and Heuer 2009) and qualitative methods such as media studies (Farrell 2011; Kwan 2009; Saguy and Gruys 2010), ethnography (Boero 2012), and interview-based studies focused on the lived experience of fat people (Meleo-Erwin 2011). A few key works explicitly connect HAES to sociological dialogues about fatness. The rise of fat studies as an interdisciplinary academic field is reflected in the 2009 publication of The Fat Studies Reader. This reader outlines HAES and its connections to the academic discipline of fat studies as an “alternative public health model for people of all sizes” (Burgard 2009, 42). Amy Farrell’s book Fat Shame (2011) draws on historical perspectives and introduces HAES as a countermovement to conventional medical and public policy which asks not how to make fat people thin, but how to make fat people healthy. Boero (2012) also discusses HAES as an alternative paradigm to traditional public health assumptions that lower weight equals better health; these models are presented in most of her fieldwork. Finally, Abigail Saguy’s book, What’s Wrong with Fat (2013), highlights HAES as an alternative paradigm, but places it squarely within the public health framework. All four of these books discuss varying levels of “blame” for obesity (e.g., individual bad choices versus harmful food policy), but most describe the common public health frame as one that places the onus of obesity onto individuals and their lifestyle choices.

Embodied Health Movements and Health Social Movements Embodied health movements mobilize through politicized collective identities. These movements turn personal struggles into social problems in “boundary movements” by blurring the boundaries between lay people and experts in attempts to ­create fluidity and influence the meaning of certain health issues in society (Brown et al. 2004, 64). HAES and fat politics can both be considered health social movements (HSMs), a particular subtype of embodied health movement that centers on the body and challenges medical practice through collaborations between activists, scientists, and professionals (Brown et al. 2004). HSMs challenge existing biomedical hegemonies and offer structural challenges to powerful professional authority to make social change around specific health issues. Fat studies challenges many of the dominant biomedical theories of fatness and most certainly challenges government and public health messages about obesity, which emphasize fatness as a modern crisis of health and morality. Fat studies incorporates perspectives from the social sciences and humanities to investigate a range of topics related to fatness, including the lived experiences of fatness, fatness in popular culture and media, and fat embodiment and health (Lupton  1995; Petersen and Lupton  2000). This chapter is focused on analysis of HAES as a particular type of embodied HSM at the nexus between public health and fat politics.

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Methods I used situational analysis (Clarke 2005; Clarke, Friese, and Washburn 2018) to map HAES as a profession-based social movement and detail its segments, drawing from both a social worlds/arenas framework (Strauss  1993) and situational analysis (Clarke 2005). Strauss describes social worlds as entities of social action that share sites of activity, with fluid boundaries where properties and activities within worlds vary greatly, often resulting in disputes about boundaries. Social arenas are then where interactions between social worlds occur around specific issues, “where actions concerning these are being debated, fought out, negotiated, manipulated and even coerced within and among the social worlds” (Strauss 1993, 226). For example, in Figure 8.1, the social worlds of individual organizations like ASDAH or fields of study like fat studies are contained within social arenas of HAES and fat politics, respectively. You can also see in Figure 8.1 how social worlds like those of HAES professionals cross and blur boundaries between and within different social arenas, in this case all four arenas presented in the figure (HAES, Fat Politics, Public Health, and Medicine). Situational analysis is a postmodern blend of theory and methods that builds on grounded theory (Corbin, Strauss, and Strauss  2008; Strauss and Corbin  1991) and Strauss’s social worlds/arenas framework by emphasizing reflexivity. SA tries to answer the question, “Whose knowledge counts to whom and under what conditions?” (den Outer, Handley, and Price 2013, 5). Situational analyses offer three main analytic mapping approaches. This chapter focuses on social worlds/arenas mapping, a meso-level analysis that shows relationships between collective actors and emphasizes the focus of social worlds/arenas maps on collective social action. Thus, situational analysis is ideal for studying collective social action like embodied social movements such as HAES since it can account for and describe multiple layers of the same issue: people, organizations, discourses, and all the intersections between them.

Data Sources To create the social worlds map, I drew from a combination of ethnographic notes1 on obesity conferences (both national and regional), HAES and fat acceptance conferences and meetings, and qualitative, longitudinal analysis (2005–2007) of the HAES journal. The ethnographic notes included extensive field notes of conference proceedings and meetings as well as autoethnographic reflections on the role of my fat body in interactions with panel presenters and fellow attendees. I drew from 10 years of informal observations from my experiences in all of the communities described here: (1) as an activist and member of a fat dance performance troupe since 2012 (Big Moves 2013, 2); as a participant in HAES communities in professional social science research circles, for example, attending the Association for Size Diversity and Health (ASDAH) trainings; and (3) as a member of public health communities via my MPH and subsequent involvement in

Health at Every Size (HAES™)   125 public health research projects (Ingraham et al.  2016; Ingraham, Roberts, and Weitz 2014). I also conducted a longitudinal content analysis of the HAES journal, a short-lived scholarly journal focused on interdisciplinary HAES work. This analysis focused on article titles for key themes as well as detailed thematic analysis of articles related to HAES meetings and organizational structures. These combined data describe the collective social action of the idea of HAES, the HAES movement, and its linked movements of public health and fat politics. Although situational analysis can be used with traditional interview-based ethnography, I found analyzing the texts and public presentation of knowledge produced by actors within HAES, the field of public health, and the field of fat politics to be the most useful in generating these maps. Clarke (2003) says that situational analysis should be used to uncover sites of silence in data. She asks us to consider “What seems present but unarticulated?” (561). In this case, I asked what about HAES seems assumed, but was not yet articulated in descriptions of its work. Asking what was assumed meant that I needed to read about HAES from both internal and external descriptions and critiques; thus, document content analysis and conference field notes were the best approach for this analysis. In the following sections, I analyze how HAES emerged via analysis of historical documentation of the HAES movement and outline the various social worlds attached through it from the beginning. I show how HAES occupies an uncomfortable space between the two social forces of health attainment and civil rights within the fields of public health and fat studies.

HAES History as Reform Movement in Public Health In the following sections, I apply Bucher and Strauss’s (1961) reform movement framework to describe various segments of the HAES movement as it attempts to “reform” public health, drawing from related social movements of fat politics and LGBTQ activism. Bucher (1962) explored fluidity and change within social worlds by extending social movements analysis to frame these as reform movements within professions, disciplines, or other work organizations. I draw from Bucher for this particular analysis because HAES functions primarily through health-focused professional organizations and workplaces, where it acts as a reform movement attempting to change dominant perspectives on the relationship between fatness and health. HAES has no single clear origin story, but it can be understood as a social movement (Diani 1992; Scambler and Kelleher 2006) and, as discussed earlier, a health social movement (Brown et al. 2004). HAES qualifies as a health social movement because it centers the body and challenges medical practices through collaborations between activists and professionals. ASDAH, the primary HAES professional organization, started in 2003 as a modified “2.0 form” of existing groups doing related work such as AHELP (Association for Health Enrichment of Large People). AHELP held six conferences (1991–1996) and then dissolved due to a number of factors, including personality conflicts and philosophical differences about social justice versus the realities of health profession work. HAES

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1969: NAAFA Bylaws signed.

1970s: Fat Underground & other fat activism groups are formed.

1997: AHELP holds three conferences before imploding. First organized national gathering of what will become HAES practitioners.

1970s

1980s

1990

1980s: Fat activist theater groups (Fat Lip) & movement groups formed (We Dance). Fat health included in Our Bodies, Ourselves 1984 edition.

1995 1998 Deb Burgard starts Health At Any Size webring

1998–1999: Discussions about Health At ANY Size vs Health At EVERY Size

2000

2001: Deb Burgard starts the Show Me the Data listserv

2004: Marilyn Wann starts the Fat Studies

2005

May 2003: Deb Burgard and Ellen Shuman start Health At Every Size Special Interest Group within the Academy for Eating Disorders May 2003: ASDAH organizational meeting held at Bowling Green State University

2011: ASDAH trademarks Health At Every Size

2010

2015–2016: ASDAH organizes its first antioppression training to address racism concerns.

2015 2008: Linda Bacon publishes Health At Every Size

2014: Linda Bacon & Lucy Amphraor publish Body Respect

Figure 8.2.  HAES history timeline.

groups and online resources that still exist today, including the Think Tank and Show Me the Data, emerged at that time as well. The Think Tank is a small group of HAES professionals who use the listserv to organize regular meetings for professional and personal socialization, while Show Me the Data focuses on circulating and critiquing mainly mainstream obesity research. After the dissolution of AHELP, a combination of health care providers and some activists then decided to start ASDAH. ASDAH was turbulent from its inception, with friction between activists and health professionals in the group over how far to extend arguments for bodily autonomy and civil rights for fat people compared to professionals’ goal of advancing health for a wider array of fat bodies. In a workshop at the 2010 NOLOSE conference (an intersectional organization focused on LGBTQ fat people), fat activist and author Charlotte Cooper organized collective efforts to create a fat, queer activism timeline (eventually published in 2012). These milestones in Figure  8.2 are included with some edited text from the original timelines. Deb Burgard, a psychologist specializing in eating disorders, emerged as a well-documented leader in this social movement. In personal correspondence about HAES history, she noted that she learned about the core ideas of HAES (body ac­cept­ ance, the move away from dieting) as a college student in the late 1970s and found colleagues with whom to pursue the work in the 1980s in the San Francisco Bay Area. She wrote that it was: Activists, therapists, nutritionists, fitness professionals, nurses, physicians, health educators, etc., who had either our own personal experiences of the medical biases against higher-weight people and/or our own experiences as clinicians that these

Health at Every Size (HAES™)   127 interventions were not helpful in the 1- to 5-year long run. We came together to figure out what the evidence said about the practices and environments that support health across the spectrum of weight.  (personal communication, March 15, 2015)

Herb (2007) also supports this history and timeline, tracing ASDAH to Burgard’s Show Me the Data listerv and to The Think Tank, which was started by Pat Lyons in the 1980s, though under several different names. Burgard further noted that the name of HAES was settled upon in the early 1990s, with Joanne Ikeda, a prominent nutrition scholar at UC Berkeley and longtime Think Tank member, and Francie Berg, a nutrition scholar and editor for the Healthy Weight Journal, claiming credit for it (Burgard  2015). While Cooper’s timeline plants HAES in fat activist contexts more firmly, Burgard’s account is the more typical HAES origin story: like-minded public health professionals seeking others who want to reform existing beliefs and interventions on and about the health implications of large body size. The HAES name was eventually trademarked in 2011 by the board members of ASDAH as a way to prevent coopting of the HAES name or model by organizations or companies that promote weight loss. This direct challenge to the medical authority often given to weight loss companies that cite public health and medical research on obesity is an example of how HAES acts an embodied health social movement. However, trademarking of HAES by ASDAH has not been without critique from fat activists and scholars (Gingras and Cooper 2012). Gingras and Cooper argue that trademarking HAES creates insider/outsider statuses and that the trademarking “highlights one of the tensions that exists when aspects of social movements become professionalized” (2012, 4); not only does it promote a strict division between professionalism and activism, but it also presumes a transparency in how the professionals “speak” for the activists that, the authors argue, does not exist. I argue that both the history of HAES itself and its new iterations offer evidence that HAES is an example of a reform movement operating in part from within public health, and intersecting with larger social justice movements centered on fatness.

The Social World(s) of HAES The situational analysis map created for this study (see Figure 8.1) details the segments of the HAES social world. Individuals and groups within each segment can and often do overlap or are hidden from certain segments, and actions are often taken across segments. HAES does the work of making health a weight-neutral enterprise. HAES is committed to talking to and within public health venues to change how the relationship between health and body size is understood. The presence of HAES is largely online, though the Bay Area of California serves as a hub for many HAES professionals. While there are a number of print books, articles, and curricula, much of the daily work of asking and providing advice on how to “do” HAES is performed through listservs and groups on social media websites such as Facebook.

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HAES: Public Health Segment HAES is firmly connected to the field of public health, both in its membership and its shared goal of health for individuals. This is represented in Figure 8.1 as the two social arenas of public health and HAES overlapping. This part of the figure illustrates how HAES strongly overlaps with public health, specifically public health action on “obesity” or large body size. But the field of public health as a whole takes on the work of striving for health for individuals, communities, and society and is a huge social world with thousands of factions. Public health social worlds are collectively committed to ideals of health based largely in medical and epidemiological knowledge. Public health appreciates that HAES values health and prioritizes individuals seeking out proper nutrition and physical activity but also utilizes HAES to address public health priorities like diabetes or other chronic illnesses. Public health and HAES share external critiques of their purpose, especially the charge of healthism and reinforcing existing inequalities like racism and classism (Petersen and Lupton 2000). “Healthism” describes the notion that individuals have a social responsibility to maintain good health and strive for the perfect, in this case thin, body (Mansfield and Rich 2013; Petersen and Lupton 2000; Welsh 2011). Nutter et al. (2016) argue that healthism and its focus on individual responsibility also obscures social determinants of health like socioeconomic status, employment status, or education level that impact access to healthy spaces and health care. HAES practitioners occasionally recognize the healthism critique, especially in more critical spaces (e.g., HAES meetings within National Association to Advance Fat Acceptance conferences), noting the goal of clarifying what “health” means within HAES to promote wellness without “succumbing to healthism” (Ingraham, field note, NAAFA HAES meeting 2012). Both public health and HAES acknowledge health as a multifaceted set of indicators (physical, mental, and spiritual well-being), but HAES removes thinness from the central conception of what a healthy body looks like in ways that public health does not. Here again we see HAES as an embodied health social movement challenging biomedical hegemonies in their understanding of what it means to have a “healthy” body. It is important to note that these conversations about “healthism” took place at a special HAES workshop day in the middle of a NAAFA conference, an activist space dedicated to supporting fat bodies. I was invited to NAAFA as an HAES scholar but blended in easily with the majority white and majority female crowd of attendees, allowing easy access to conference spaces and fellow HAES professionals who were eager to engage in discussion around public health critiques. However, the factions of public health most concerned with body size (overweight and obesity specifically) do not share this concern about “succumbing,” but rather find the valorization of health to be their purpose. The conferences I attended dedicated to obesity were filled mainly with white women and few women of color and white men, though HAES conferences and meetings tended to have more fat-identified women in attendance. At both a local obesity symposium at the University of California, San Francisco, and at a national conference for obesity (Weight of the Nation) in 2012, I found myself

Health at Every Size (HAES™)   129 hyperaware of my own large body size as speakers joked about “the most important thing” of the conference being lunch during a plenary introduction or how it felt like another panel speaker describing “individual choices [that led to] obesity” were visible on my own fat body as evidence of my own individual choices, understood to be bad ones. The bodies involved in this work matter because they visibly represent either the medical vision of health (thinness) or the medical vision of ill health (fatness), and this can impact the validity of their arguments. Thin bodies advising others in a professional context how to attain bodies like theirs is taken more seriously than fat bodies advocating for a disruption of the assumed relationship between fatness and (ill) health. Many advocates in HAES are fat and exist in bodies that challenge public health norms around body size before they even open their mouths to describe data or make policy arguments. This possibly influences why their arguments are taken less seriously in “obesity” conferences like the one described earlier. Thus, the bodies and body size of HAES advocates directly relate their involvement in the embodied health social movement. Importantly, the Weight of the Nation 2012 conference did host a session on reducing weight bias titled “Weight Bias and Discrimination: Treat Thy Neighbor as Thy Self.” Before I attended the session, I thought its inclusion hinted toward a move in the direction of HAES and weight neutrality, or at least common ground in the harms of weight bias, the term used more often in public health to describe a bias or discriminatory attitude held toward fat people (rather than, say fatphobia, more common in fat politics). The speakers, including Rebecca Puhl (Puhl, Peterson, and Luedicke 2012) from the Rudd Center,2 nodded along during descriptions of research on the negative health effects of weight bias, but continued to frame the importance of battling weight bias alongside the public health “battle to overcome and prevent obesity,” reinforcing a medical framework where obesity is a problem to be treated, and an obese person is in body in need of solving. Critics have noted this overwhelming drive of public health researchers to regress to the mean of the obesity epidemic as the default reasoning for positive health change. This is starting to change, slowly, through HAES advocates organizing panels at the American Public Health Association (APHA) conference from 2010 to 2014 and ASDAH having its first-ever APHA convention appearance in 2013. ASDAH members who worked the booth, myself included, contributed to a blog post about their experiences, with Sonya Satinsky noting that she “can say with great confidence that I can see a slow paradigm shift towards weight neutrality happening before [my] eyes” (ASDAH  2012). While I agree with Satinsky that shifts are slowly taking place, the overwhelming support for the fight against obesity rages on within most public health communities.

HAES: Fat Politics Segment Fat studies and fat acceptance movements appreciate that HAES comes from a size and body acceptance framework, and it advocates for removing weight from definitions of health. They support the enjoyment of food and physical activity as pleasurable pursuits

130   Natalie Ingraham without the goal of weight loss, and they support a notion of holistic health and body acceptance as key to happiness. However, this does not translate into complete endorsement of HAES by fat activists or fat politics more broadly. Michelle Allison (2013), “The Fat Nutritionist,” describes the relationship between HAES and fat politics in a blog post here: In truth, [HAES] does intersect with both fat politics and weight science, and yet it is neither of these things. It incorporates parts of both to form a bridge between them. [HAES] developed as something of a response, or corollary, to fat politics. The principles of HAES arise from a foundation of (personal, and maybe political) fat acceptance, while not actually being the fat acceptance movement. It is a different, but attached, thing.  (Allison 2013)

J. Eric Oliver (2006),3 a political scientist not explicitly aligned with HAES, writes about the intersections of fatness, health, and privilege, highlighting that the worry over fatness is less about health and more about social standing. He argues that Americans accept obesity as a problem because it primarily impacts those with the least social power, especially women, racial/ethnic minorities, and people at the intersections of both (e.g., fat women of color). While this framing is not present in most day-to-day or practical HAES work, it does reflect the foundation of HAES as a social justice movement focused on body acceptance and health for all. Oliver’s framing of obesity as a problem primarily of those without social power and privilege may also reflect the tendency of HAES fat activist spaces to be primarily filled with fat white women. Detailed in the internal conflicts that follow, fat (often middle-class professional) white women were described by one person of color as flocking to HAES and fat activists spaces to address the “one area” of privilege they lacked—thinness. However, this ignores other intersections of power such as disability. Many HAES advocates I interacted with also had some type of disability—physical, mental, or both. Cooper (2016) considers HAES under what she calls an obesity and health “proxy” for fat activism rather than a type of fat activism itself. She distances HAES from fat activism because of its central focus on health, which leaves it pushing back against the obesity frame of fatness rather than centering fat activism alone. For Cooper, fat activism does not center health and well-being, but rather centers rights and pushback against discrimination or mistreatment of fat individuals. By centering health, HAES is, by definition, continuously engaging directly with obesity discourse, unlike fat activism that attempts to distance itself from obesity discourse altogether. It is this challenge and continuous engagement with obesity discourse that marks them as an embodied health social movement. Cooper also importantly highlights the way that the professionals within HAES reproduce hierarchies (race, class, gender) due to their elite status as highly educated professionals, making some of its knowledge—such as published academic materials— closed off or unable to access without fees, distancing HAES from the free flow of information central to fat activism (2016, 176). Fat politics and HAES have both moved in more intersectional directions in recent years. Fat activism has a longer history and

Health at Every Size (HAES™)   131 overlap with disability rights movements, but an intersectional focus on race and racism is more recent and more prominent among radical fat activists4 while being a source of internal critiques by HAES advocates, especially people of color in the movement.

HAES: Internal Segments and Critiques Because HAES was formed from several divergent groups and epistemological understandings of the body (medicine, psychology, nutrition, fat activism), it follows that critiques from within the movement abound. This is especially true for the ways in which HAES addresses commonly accepted social determinants of health, such as race and class. This is most notable in critiques of the lack of leadership positions held by people of color with ASDAH, the primary face of HAES and its trademarking organization, or authors of the most widely circulated HAES writing being predominantly white academics. HAES tends to get boiled down to individually focused recommendations by both HAES professionals and popular media for health behaviors prescribed as “better” than dieting, but because whiteness has been centered in the creation and proliferation of HAES, it implicitly centers white individuals rather than acting on health concerns of broader communities or communities of color specifically. Although several authors have tackled the intersection of fatness and race in fat studies (Kwan 2009; PattersonFaye 2018; Strings 2019) and in sociology of the body more broadly (Fausto-Sterling 1995; Roberts 1999), there has been little examination of race and the HAES social movement. ASDAH was described to me by practitioners as a “support group” for HAES professionals, with conferences designed for those professionals to be in community as well as helping HAES colleagues push back against the medical model rather than advancing or pushing HAES principles themselves (Ingraham, Beyond HAES field note, February 2015). This is also reflected in HAES intervention research, which, similar to most eating disorder and body image research, has been carried out on and with middle-class white women to the exclusion of women and men of color or low-income women or men (Kratina 2005; Leblanc et al. 2012; Provencher et al. 2009). The support of HAES professionals indicates that it may sometimes lack the lay people perspectives that make up health social movements, but the central challenge to current medical practice remains true. One group that was working to address race-related critiques of HAES was Beyond HAES—a collection of health professionals and fat activists that met primarily in Oakland, California, from late 2014 until 2016.5 In one meeting of Beyond HAES, a participant noted that “White people are drawn to HAES because it must help them access their (often only) missing privilege,” that is—thinness (Ingraham, Beyond HAES field note, February 2015). This group eventually disbanded in order to form a new collective that centered queer women of color in anti-oppression work that included body size. Gingra and Cooper (2012) note in their critique of the ASDAH HAES trademark that patenting the name “fails to interrogate broader misuses of power” or “build an intersectional movement that is able or ready to engage with a multiplicity of social justice issues” (4). These internal and external critiques specific to race and racism within

132   Natalie Ingraham ASDAH have sparked some action. The 2015 ASDAH conference in Boston, “Difficult Conversations: Building Relationships in the HAES™ Community and Beyond,” explicitly focused on starting anti-oppression, social justice–focused trainings, noting to members that the “difficult conversations” required at these workshops promise “rewards of intersectionality” and a move forward for the movement (ASDAH 2015). In the beginning of 2016, ASDAH organized a 4-hour anti-oppression web-based workshop for members that included review of intersectionality and particular focus on antiracist work and the work of white “allies” (field notes). ASDAH has continued this work by centering anti-racist work in its annual conferences. However, other intersectional concerns remain, including ableism, the preference for nondisability, and discrimination toward people with disabilities (Friedman and Owen 2017; Loja et al. 2013). Ableism concerns within HAES have not been addressed as directly by ASDAH in its conferences and membership educational materials despite decades of overlap between fat politics and disability rights movements (Cooper 2016). I noted no discussion of ableism during my observation of ADSAH and other HAES-focused events, where the ability or disability of certain bodies to engage with HAES concepts was not questioned. Presenters never asked what it means to center health in their work if bodies are already chronically ill or disabled and situations where core tenets of HAES, like pleasurable physical activity, simply are not possible due to disability. Internal critiques of HAES have also been based on what public health practice looks like in day-to-day interactions between individuals. Using the HAES name without adherence to its stated principles, such as treating HAES as a new diet program for weight loss, has sometimes led to the coopting of HAES language by corporations shilling weight loss products. Currently, ASDAH members have a long checklist they must agree to use to truly represent the mission and values of HAES. But members have argued that this version of HAES is largely behaviorally focused, drawing mainly from Linda Bacon’s first HAES book (Bacon 2010), to the exclusion of both its more radical fat activism and the daily realities of medical, nutrition, or public health practices where the constant focus on the “obesity epidemic” and desire for weight loss is real and pressing for many patients.6 Bacon, and coauthor Lucy Aphramor, notably moved away from the behavioral focus on the first book in later iterations of work focused on weight science and health (Bacon and Aphramor 2014). These collective internal critiques from within HAES serve as a reminder of its tether to fat politics and fat activism specifically and ask it to move forward as a movement with intersectional intention.

HAES as a Reform Movement in Public Health: Publishing as Strategies I return to HAES history in this section to show examples of how its various segments described earlier (public health, fat politics, internal) manifest in HAES-focused

Health at Every Size (HAES™)   133 publications. I found that public health is the primary professional field of most authors in HAES journals, indicating significant overlap between these social worlds and arenas. It is this strong tether between public health and HAES that allows HAES the space to act as a reform movement from within public health as an embodied health social movement. The reform contained in these journals comes from collaborations between public health professionals and fat activists (who also publish articles occasionally) to push for changes to medical practice and policy—key elements of an embodied health social movement. I also show how HAES maintains the both/and perspective of wanting both size acceptance and health to be the focus of their work throughout its journal; publishing in academic journals was and remains a key strategy of this movement. While a few articles in fat studies have explored the history of movements associated with large body size (Cooper 2012; Spinetta 2013), little scholarship has considered HAES specifically. The “official” history from the ASDAH page documents 40 years of social history of fatness, highlighting major publications, authors, activities, and organizations that have played a role in getting to the HAES movement and organizations we have today (Bruno 2013a, 2013b, 2013c, 2013d, 2013e, 2017). Notable HAES leaders have generally been cisgender white women, while others have identified as lesbian or queer—pointing to the early intersections of LGBTQ movements and fat acceptance movements highlighted in Figure 8.1. These leaders, and HAES practitioners (represented in the box above the public health social world in Figure 8.1), all sit at the intersection of fat politics and professional identities within public health factions (e.g., psychology and dietetics).

HAES Publishing For this part of my situational analysis, I focused on The Healthy Weight Journal and its next iteration, the HAES Journal. The Healthy Weight Journal (HWJ) began in April 1986 as an 11-month free pilot newsletter, expanding to over twenty-one issues per year to reach an international audience of health professionals. The HWJ situated itself alongside and in reaction to “the rise of an obesity research industry,” including journals, obesity centers within universities, “industry-supported” conferences, and “obesity treatment” books (Berg 2009). Although the HWJ sought to reduce size-based prejudice, the inclusion of the term obesity in many of its iterations obviously conflicts with the weight-neutral language used by HAES advocates today who tend to avoid the term obesity or describe it as a medicalized term for fatness. Berg (2007) listed the main editorial influences of the journal as a combination of scientists, therapists, and (unnamed) “cutting-edge leaders” in the size activist community (a term sometimes used to describe fat activism), which led to the inclusion of a size acceptance page within the journal that routinely documented negative experiences of weight stigma. Berg’s explicit mention of size activists’ role in the journal points to HAES ties with social justice movements from the beginning—an important activist arm that gently pushed the readers of the journal to situate their world beyond the strict healthbased implications of HAES research.

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Healthy Weight to HAES The HWJ transformed into the HAES Journal, publishing eight issues from 2005 to 2006, combining articles and regular columns by various HAES leaders. Although not explicitly stated, this shift can be read as a decentering of weight in favor of health as a central organizing concept that better reflects the goals of HAES. The journal carefully notes its commitment to “reporting controversial issues from a HAES perspective” and acknowledges its (fat) activist leanings by clearly declaring that the journal is “committed to exposing deception, reshaping detrimental social attitudes, and promoting good health for people of every size and shape” (Cohn and Moors 2005, 1). In Table 8.1, taken from the first issue of the HAES Journal, the editors were clear about the distinction between HAES and the “traditional weight loss paradigm” usually found in medicine and public health literatures (Robison 2006). However, HAES still seeks recognition and respect from public health agencies. Robison demonstrated this when he explicitly stated that HAES does not mean that all people are “currently at a weight that is healthiest for their circumstances,” a direct distancing from the more “radical” fat activist arm that would argue for the removal of all links between weight and health. Robison argues that the goal of HAES is to support health professionals in helping people live “healthier, more fulfilled lives” with the bodies they currently have, where the focus on “self- and size acceptance” is considered first (2006, 7). By placing “self- and size acceptance” first and primary to professionals’ ability to help their patients be healthier, Robinson tethers the movement and the journal explicitly to activism and reform, highlighting the both/and perspective HAES practitioners engage with throughout the journal. However, this is a contested position, and many within HAES (as noted in the breakdown of HAES segments) would argue that both acceptance and health are equally important to the movement; hence, both concepts are reflected in the movement’s title. Many authors published in the HAES Journal hold degrees in nutritional science or dietetics, in part reflecting the publisher and circle of editors recruiting authors and reviewing papers. However, many authors also incorporate size-based activism into their articles. For example, Gingras (2006) self-identifies as a member of the “size ac­cept­ance movement since 1997 when she coordinated the first of many scale smashings to celebrate International No Diet Day” (Gingras 2006, 204). Gingras reflects the fluid boundary between (fat) activism and health professions that has existed in HAES from its beginnings. This fluid boundary supports the idea of HAES as a reform movement from within public health because it reflects the ways that its members straddle both activism and health professions with a desire to push the health profession side with activist beliefs and actions. Sociologist Pattie Thomas (2006) considered HAES as a potential health policy alternative to counter the framing of obesity as a social problem by public health. She notes that HAES as a “counter-social movement” is working against someone else’s agenda in “reactive mode” rather than creating its own. Thomas highlights the power struggle within HAES and asks if the movement is seeking reform or radicalism. However, other

Health at Every Size (HAES™)   135 Table 8.1.  Traditional Weight Loss versus Health at Every Size Traditional Weight Loss Paradigm

Health at Every Size

Everyone needs to be thin for good health and happiness.

Thin is not intrinsically healthy and beautiful, nor is fat intrinsically unhealthy and unappealing.

People who are not thin are “overweight” because they have no willpower, eat too much, and don’t move enough. Everyone can be thin, happy, and healthy by dieting.

People naturally have different body shapes and sizes and different preferences for physical activity. Dieting usually leads to weight gain, decreased self-esteem, and increased risk for disordered eating. Health and happiness involve a dynamic interaction among mental, social, spiritual, and physical considerations.

Source: Summarized from Robison (2006, 5).

authors within the same issue of the HAES Journal focused more directly on the ­relationship between HAES and public health, favoring the reform movement approach. Linda Omichinski (2006) noted that the HAES movement remains fractured with no unified, cohesive core in her article on a HAES-influenced health program. While Thomas and Omichinski both clearly delineated problems within HAES, both are still oriented toward the potential of HAES to push public health boundaries and conceptualizations of the relationship between health and body size. Reformers like Omichinski would be perfectly happy “to be inside” public health and try to push at its boundaries slowly, educating public health professionals primarily through evidence-based arguments. More radical approaches, such as those mentioned by Thomas, want to see an entirely new agenda with HAES, one that assumes public health is less capable of reform and more in need of an entire paradigm shift in how it views the relationship between body size and health. However, this paradigm shift seems an unlikely goal in the face of the overwhelming power of the field of public health in relation to relative power of fat activism. I argue this is why HAES’s ability to influence public health is more successful as a reform movement from within, rather than a direct confrontational movement that asks for paradigm shifts from a social force unwilling to budge from its current understandings of fatness as harmful to bodies and to the health of the public. This is evidenced by the publication of several peer-reviewed studies of HAES-based health intervention programs (Bombak 2014; Leblanc et al. 2012; Lekkas and Stankov 2014; Provencher et al. 2009). Throughout its publication, the HAES Journal strongly positioned itself in opposition to “traditional” weight loss goals often centered in public health throughout its publication history. While the movement is not presented as a united front, as we saw in Thomas and Omichinski’s articles, they are nonetheless oriented toward the potential of HAES to push public health boundaries. This ability to push public health boundaries from within is due to the fluid boundary between fat activism and health professions, as many HAES practitioners inhabit both worlds.

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Discussion In this chapter, I used situational analysis to examine Health at Every Size as a reform movement within public health and its connections to fat politics. Using situational mapping, I highlighted the vast and diverse worlds of public health and the complex intersections of fat activism and HAES, given the complicated and overlapping networks of actors that compose their social worlds. A social worlds map of HAES (Figure 8.1) delineated some key relationships within and among HAES, public health, and fat politics as well as key stakeholders within each world who have undertaken the historical and current work of the HAES movement. This analysis also solidifies the notion of HAES as a social movement, following the elements outlined by Diani (1992): (1) informal networks based on (2) shared beliefs and solidarity which (3) mobilize around conflictual issues and (4) deploy frequent and varying forms of protest (Scambler and Kelleher 2006, 220). HAES relies on both formal and informal networks based on shared beliefs about body acceptance, health, and wellbeing based on shared beliefs stemming from its fat activist roots. HAES practitioners and activists mobilize around conflicts within and between themselves and public health professionals outside of the HAES community, deploying forms of protest such as editorials, though this is perhaps the weakest area of social movement theory to HAES. Because HAES operates primarily as a reform movement within public health, HAES is best considered a health social movement. HAES seeks equitable access to care, improved provision of services, and is a “constituency-based health movement” that addresses health inequalities based on shared social characteristics and identities (Brown et al. 2004). Drawing on personal and organizational accounts of HAES that emerged and formed through pathways of existing fat political activism and health professional work allowed me to extend Bucher’s work (1961, 1962) on early reform movements within professions. Bucher and Strauss’s (1961) connection of professions to social movements is key to HAES as it navigates relationships with both public health and fat politics in a “power struggle” for places within existing institutions. In this way, many HAES segments strategically deploy both/and perspectives (Hill-Collins 1991) to be able to access the public health discipline and push it toward change. Future expansions of this analysis could extend the examination of segments within HAES itself or pursue in-depth explorations of how segments within public health professions and/or fat politics “professions” or activism extend into the world of HAES. HAES practitioners who move more within public health worlds, perhaps those in licensed or professionalized settings such as dietetics, may also engage in strategic deployment of the two main features of HAES advocacy: the focus on health and the focus on (body) acceptance. The strategic focus on health allows these practitioners to use the power and educational (and generally class) privilege originating in their professional roles to connect with other public health professionals. Centering the concept

Health at Every Size (HAES™)   137 of health connects HAES to the more socially and institutionally powerful public health world, but size acceptance is also gaining in social acceptance and support. This could mean that, in the future, HAES practitioners who engage with both public health and size acceptance advocacy tools will be able to draw from two distinct sources of social power, the professional and medical power of public health and the popular support for size acceptance, such as increasingly visible marketing campaigns that espouse body positivity. While most segments of HAES more closely aligned with public health keep both health and acceptance at the core, they also argue for HAES perspectives within public health worlds using health as the uniting concept between the two groups. By delegating size acceptance to the background, HAES advocates are free to relate to public health through a “common language of health,” without muddying the waters with explicit activist concerns. More common, however, is the “both/and perspective” that incorporates both health and size acceptance as key and inseparable pieces of HAES, presented in tandem, to provide an authentic HAES perspective. This is reflected in actions such as the ASDAH member agreements, in which members pledge to follow all the HAES tenets in the work, as HAES representatives. This both/and insistence on HAES as a combination health and body acceptance package for health professionals is one way in which HAES pushes the boundaries of public health. It may be tempting to pin down HAES as a movement focused solely on the relationship between body size and health, but some segments within HAES critique racism and ableism within and beyond HAES. These splinter segments, organizing through antioppression and social justice frameworks, push HAES into consideration as a multicausal movement. Such movements are described by Alondra Nelson (2011) in her work on the health activism of the Black Panthers. Extending Nelson’s analytic to HAES highlights how the HAES movement connects across social worlds of fat rights activism, public health, anti-racism, civil rights, and disability rights. This follows from HAES inception out of the second wave feminist movements led primarily by lesbian health professionals that initially grounded the movement more squarely within social justice activism on control of women’s bodies. While men have been involved with HAES since its early days, such as Paul Robison, it began and remains a movement largely helmed by women in the health professions with an eye toward helping women, in particular, move away from dieting and body shame, as seen in the primary targets for HAES interventions and leadership in HAES organizations. The gendered nature of this movement and its feminist origins highlight its main players (white women), the type of power or privileges they have (race, class) or have access to (professional careers, higher education), and the strategies they use to position the movement (academic publications, professional conferences, etc.). While HAES can and should be considered an international movement that continues to increase the racial, gender, and educational/professional diversity of its membership, it remains a largely white women’s movement designed to help white women achieve better health without dieting and body shame.

138   Natalie Ingraham

Conclusion This chapter offers the first sociological perspective to explore HAES as an embodied health social movement. It outlines a brief history of the HAES movement and its key players using a social worlds/arenas analysis (Clarke 2005; Strauss 1993). Further studies of HAES history may use interviews with key informants, such as HAES editors and authors listed here, which would enhance the discussion of HAES as a social movement within public health. Additionally, this research extends Bucher’s work (1961, 1962) on professional segments by using situational analysis and social worlds/arenas analytical tools to situate and describe HAES, its segments, and their relations with adjoining fields of public health and fat politics. Future studies could explore specific segments in greater depth. This is particularly important for recently emerging segments internally critical of HAES with regard to its lack of attention to intersectionality and issues of race, class, and ableism in its work on health and body acceptance. Examining HAES via a social worlds analysis allows us to see the connections across varied, and perhaps seemingly, disconnected social movements. It has the potential to expand the way we think about embodied health movements outside of those particularly concerned with health or medicine, the traditional way embodied health movements are studied. By examining the connections between HAES and other embodied social movements of fat politics and LGBTQ activism, we can see how intersecting identities and oppression can shape future, emerging embodied social movements beyond embodied health social movements alone. Many argued during and since the passage of the Affordable Care Act that health care is a human right and the ability to access good health is a civil right. However, this centering of health in the discussion of rights related to embodied citizens inherently privileges the voices of those with the most power in discussion of what health means—voices in medicine and public health. And the medical social world’s strong, consistent message about fatness is that it is an abnormality of the body in need of both treatment and prevention. HAES’s centering of health means that it will always be caught up in the same charges of healthism as public health and that other embodied health social movements around body size will share this same struggle. HAES is, in some ways, a social movement in an impossible position that it should continue to hold; an important position that does the hard, but necessary work of shifting public health perspectives on body size from within. This important position still has room for growth, and HAES can and should evolve as a health social movement based on internal critiques that address important intersections of race, class, gender, and ability level.

Notes 1. This project also draws from my larger dissertation project (Ingraham 2016), which used three different qualitative data sets to examine the intersections of body size, gender, and health. While one data set formed the basis for this chapter, the other two projects a­ nalyzing

Health at Every Size (HAES™)   139 a lesbian and bisexual women’s health program for obese women and a content analysis of a weight loss reality show, both included some aspect of HAES that informed the creation of this social worlds analysis. 2. The Rudd Center for Food Policy and Obesity (2018) has been among the most prominent producers of research related to fat/weight stigma. They began producing this research at Yale University with Kelly Brownell at the helm and are now led by Marlene Schultz and Rebecca Puhl at the University of Connecticut. The Rudd Center is a controversial research center for many fat activists and scholars, who critique their framing of weight stigma, which often focuses on how weight stigma is harmful because it prevents weight loss rather than causing harm on its own. 3. Interestingly, Oliver initially set out to explain how America was going to “deal” with obesity as a political problem in his book. However, after talking with obesity experts and fat activists, the book shifted into a critique of weight science and a framing of the social construction of the obesity epidemic (Heaney 2007.) 4. Charlotte Cooper (2013) defines a fat activist as “a person who thinks about fat in ways that challenge, question, and critique most mainstream thinking about fat. Fat activists seek social change and consider fatness a factor within already existing matrices of oppression and liberation.” 5. Beyond HAES (aka HAES’d & Confused) was founded by Jessica Wilson, MS, RD, a Black dietitian and writer. The labor and ideas of Jessica and other fat Black and Brown participants in this group helped shape my thinking around the critiques of Health at Every Size and should have been recognized and cited in the initial chapter section on HAES critiques. 6. Bacon’s later book with coauthor Lucy Aphramor (2014) offers an updated social justice framing to debunking obesity myths and promoting HAES as an alternative perspective on health and nutrition.

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142   Natalie Ingraham Lekkas, Peter, and Ivana Stankov. 2014. “Framing Obesity—Drawing on the Margins.” American Journal of Public Health 104, no. 7: E1–E2. doi:10.2105/AJPH.2014.301963. Loja, Ema, Maria Emília Costa, Bill Hughes, and Isabel Menezes. 2013. “Disability, Embodiment and Ableism: Stories of Resistance.” Disability & Society 28, no. 2: 190–203. Lupton, Deborah. 1995. The Imperative of Health: Public Health and the Regulated Body. London: Sage. Mansfield, Louise, and Emma Rich. 2013. “Public Health Pedagogy, Border Crossings and Physical Activity at Every Size.” Critical Public Health 23, no. 3: 356–370. Meleo-Erwin, Z. C. 2011. “ ‘A Beautiful Show of Strength’: Weight Loss and the Fat Activist Self.” Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine 15, no. 2: 188–205. doi:10.1177/1363459310361601. Nelson, Alondra. 2011. Body and Soul: The Black Panther Party and the Fight against Medical Discrimination. Minneapolis: University of Minnesota Press. Nutter, Sarah, Shelly Russell-Mayhew, Angela  S.  Alberga, Nancy Arthur, Anusha Kassan, Darren E. Lund, Monica Sesma-Vazquez, and Emily Williams. 2016. “Positioning of Weight Bias: Moving towards Social Justice.” Journal of Obesity 2016: 1–10. Oliver, J. Eric. 2006. Fat Politics: The Real Story behind America’s Obesity Epidemic. New York: Oxford University Press. Omichinski, Linda. 2006. “HUGS: The Journey to Building Momentum and Unity for Health at Every Size.” Health at Every Size Journal 20, no. 3: 119–132. Outer, Birgit den, Karen Handley, and Margaret Price. 2013. “Situational Analysis and Mapping for Use in Education Research: A Reflexive Methodology?” Studies in Higher Education 38, no. 10: 1504–1521. doi:10.1080/03075079.2011.641527. Patterson-Faye, Courtney. 2018. “When and Where I Always Enter: An Auto-Ethnographic Approach to Black Women’s Body Size Politics in Academia.” In The New Black Sociologists, edited by Marcus Anthony Hunter, 89–100. New York: Routledge. Petersen, Alan, and Deborah Lupton. 2000. The New Public Health: Health and Self in the Age of Risk. London: Sage. Provencher, V., C.  Begin, A.  Tremblay, L.  Mongeau, L.  Corneau, S.  Dodin, S.  Boivin, and S. Lemieux. 2009. “Health-at-Every-Size and Eating Behaviors: 1-Year Follow-up Results of a Size Acceptance Intervention.” Journal of American Dietetic Association 109, no. 11: 1854–1861. doi:10.1016/j.jada.2009.08.017. Puhl, Rebecca M., and Chelsea A. Heuer. 2009. “The Stigma of Obesity: A Review and Update.” Obesity 17 (January): 941–964. doi:10.1038/oby.2008.636. Puhl, R., J. L. Peterson, and J. Luedicke. 2012. “Motivating or Stigmatizing? Public Perceptions of Weight-Related Language Used by Health Providers.” International Journal of Obesity 37, no. 4: 612–619. doi:10.1038/ijo.2012.110. Roberts, Dorothy  E. 1999. Killing the Black Body: Race, Reproduction, and the Meaning of Liberty. New York: Vintage Books. Robison, Jon. 2006. “Health at Every Size: Antidote for the Obesity Epidemic.” Health at Every Size Journal 19, no. 1: 3–10. Saguy, Abigail Cope. 2013. What’s Wrong with Fat? New York: Oxford University Press. Saguy, Abigail C., and Kjerstin Gruys. 2010. “Morality and Health: News Media Constructions of Overweight and Eating Disorders.” Social Problems 57, no. 2: 231–250. Scambler, Graham, and David Kelleher. 2006. “New Social and Health Movements: Issues of Representation and Change.” Critical Public Health 16, no. 3: 219–231. doi:10.1080 /09581590600986440.

Health at Every Size (HAES™)   143 Spinetta, Christine. 2013. “Fat and Fit: A Culture-Centered Approach toward a New Paradigm of Health and the Body.” PhD diss., Purdue University. Strauss, Anselm L. 1993. Continual Permutations of Action. New York: Aldine de Gruyter. Strauss, Anselm L., and Juliet M. Corbin. 1991. Basics of Qualitative Research: Grounded Theory Procedures and Techniques. Newbury Park, CA: Sage. Strings, Sabrina. 2019. Fearing the Black Body: The Racial Origins of Fat Phobia. New York: New York University Press. Thomas, Pattie. 2006. “Could Health at Every Size Make a Good Public Health Policy?” Health at Every Size Journal 20, no. 1: 7–16. UConn Rudd Center for Food Policy & Obesity. 2018. “Rudd Center.” http://www .uconnruddcenter.org/. Welsh, T. 2011. “Healthism and the Bodies of Women: Pleasure and Discipline in the War Against Obesity.” Journal of Feminist Scholarship 1: 33–48.

chapter 9

Fat as a Fl oati ng Sign ifier Race, Weight, and Femininity in the National Imaginary Sabrina Strings

It could not be denied that Ann Switzer had fine, large rolling black eyes, glossy, dark hair, a well-rounded, plump little figure, the prettiest feet that ever tripped over a cowslip, and as neatly moulded an arm as was ever shaken over a milk-pail. —Godey’s Lady’s Book, “The Recorder of the Ballyopreen. An Election Record,” December 1833 If you chance to look in at the door of any of the rooms you pass, you will see . . . an entire Irish family . . . all plump, rosy, and thriving . . . on plenty of heterogeneous food, and superfluity of dirt. Did not I hear you talking on the stairs, yesterday, with some of them Irish cattle? —Godey’s Lady’s Book, “Fanny McDermot,” January 1845

In the two foregoing vignettes, there are at least two things that stand out. First are the contrasting representations of “plump” figures. In the 1833 article, the voluptuous woman was deemed an undeniable beauty, respected throughout the small farming town she inhabits for her “well-rounded” appearance. In the 1845 essay, however, the plump people, described begrudgingly as thriving in the rudimentary sense of health, are clearly plying themselves with a large share of food, while failing to observe the minimum standards of hygiene. These plump people, far from being like the undeniable beauty who floats above the local farming populace, are instead likened to the cattle the farmers have to herd.

146   Sabrina Strings Second is the role of race in the differential assessment of the robust individuals. Ann Switzer, the voluptuous beauty, is revealed in the essay to be an Anglo-American Protestant woman. Her marriage to an Irish man is treated as inexplicable. Conversely, the Irish people who form the center of the second essay are viewed as coarse, unwashed fat persons. In the eyes of the narrator, they are akin to farm animals. In this chapter, I underscore the underappreciated role of race in the disparagement of fat persons in the United States. Several scholars have considered the centrality of gender and class (Banner 1983; Bordo 2003; Friedan 1963; Klein 2001; Wolf 1991) within our fat-phobic culture. However, many fewer have interrogated the centrality of race and race-making in the chrysalis of the American anti-fat posture. I show that during the nineteenth century, the era in which scholars have shown the anti-fat sentiment in the United States was on the rise, the fear of racial Others played a critical role in the growing horror surrounding corpulence.

Background In American Beauty, a landmark study on the history of American aesthetics, Lois Banner showed that the mid-nineteenth century marked a critical moment in the reassessment of fat bodies, especially those of women. In the United States prior to the mid-nineteenth century, a plump and rounded feminine form would have been considered pleasing to many American women and men. It would have represented the ideal form in the eyes of many doctors as well as respected figures in the mainstream media (Banner 1983). But by the 1830s, rounded and curvaceous feminine bodies were increasingly a ­contested aesthetic ideal. Figures described as “ultra-attenuated . . . frail, and slight” figures were gaining esteem (Banner  1983, 45). Many women cultivated physiques deemed delicate, graceful, and slim as marks of refinement (Banner 1983, 45). As to the question of what led to the contestation surrounding voluptuousness, as well as the growing treatment of slenderness as a sign of cultivation, Banner provides a largely class-based argument. “Slim waists,” she intones, “were the luxury of a social class that did not have to live on a heavy starch diet” (1983, 53). In other words, economic changes within the nineteenth-century Industrial Revolution gave the middle and upper classes more freedom of choice where diet was concerned. In an effort to show their freedom from want, the cultured classes now chose lighter foods. The working poor, by contrast, still had to rely on heavy, cheap, and starchy foods that would keep them sated, and also cause them to grow stout. Therefore, even though fleshy figures did not immediately and entirely fall from grace, the period witnessed a growing aversion to fatness due to its association with poverty (Banner 1983). Banner’s assessment resonates with that of other scholars on the early class-based origins of the American aversion to fatness (Klein 2001). Yet, while class played a part, it is evident in the vignettes at the start of this chapter that it was also the racial identity of those persons deemed commonly corpulent that

Fat as a Floating Signifier   147 made fatness an increasingly undesirable form of embodiment for the well-to-do Anglo-Saxon woman. In other words, it was not necessarily the fatness in and of itself that proved problematic. It was the growing association between fatness, poverty, and racially Othered women. Indeed, one of the more striking revelations from Banner’s own work is that German women, deemed racially related to American Anglo-Saxons, were routinely praised for their robust figures. Frequently arriving in the United States with greater financial means than the average Irish immigrant, it was common to see German women, described as “ready to burst with plumpness . . . wholesome, handsome and agreeable” (1983, 58). At the same time, the Irish were depicted as “wild,” “unkempt,” and unrestrained in their oral appetites.1 In this chapter, I show that it was not just gender and class that were key to the contestation surrounding fat and fleshy forms in the nineteenth century but also race. That is, the plump forms of German and Anglo-Saxon women were commonly lionized. However, the putatively fat figures of Celtic Irish immigrant women, who were believed to have racial kinship with Africans, were demonized. To put this in sociological terms, I argue that fatness became a “floating signifier” of race (Hall and Jhally 1996). In other words, the meaning of fleshy female bodies varied by the race of the bearer. This made fatness unstable and politically contested among elites. In the sections that follow, I explain the meaning of my assertion that fatness was a floating racial signifier. I explain that since the meaning of fatness was floating and thus unstable, it was being used by elite white people in competing “racial projects” (Omi and Winant 1994). Next, I explain my methodology. Finally, I explain the significance of this project, in that it underscores the centrality of the combined ideas of race and weight in our inherently gendered notions of national citizenship.

Race as a Floating Signifier Social scientists have long argued that race is a social construct that is used to create ­relationships between physical embodiment, behavior, and biology. Race, in this way, functions by masquerading as if it were a natural or innate quality of persons (Cornell 1998; B. J. Fields 1990; Glenn 1999). By connecting nature and culture, making them “correspond with one another, in such a way that it is possible to read off the one against the other,” race maintains its validity and authority as an organizing principle (Hall and Jhally 1996, 13). This explanation for race as a biological fiction—or as cultural ideas attached to the bodies of various groups—helps us to grasp the staying power of the construct, as well as how it is perpetuated over time. However, it does not help us understand their transformation. In this regard, sociologist Stuart Hall added a critical element to our understanding of race. According to Hall, race is not just a construct, it is a discursive concept.

148   Sabrina Strings It is a signifier, one that implicates certain bodies (e.g., signs) and attaches to them an entire slate of characteristics (e.g., signifieds).2 Moreover, because race is based on a ­fiction, it is not fixed. It is a “floating signifier,” meaning that the bodies they comprise and the traits that attach to them are in constant motion, and “can never be finally or trans-historically fixed” (Hall and Jhally 1996, 8). Hall’s work provides critical insights into the volatility of race, noting that though it is embodied, it is never fixed. Yet we do not get from this analysis an understanding of how racializations shift and move. Under what circumstances do racializations, or the bodies and qualities attached to a particular race, change? And significantly, who changes them, and who is changed by them?3

Racial Projects, Gendered Bodies Michael Omi’s and Howard Winant’s approach, as articulated in Racial Formation in the United States, can contribute useful analytical insights to Hall’s theory of race as a floating signifier. Per the authors, racializations shift and move as a result of key actors engaging in “racial projects.” Racial projects are the efforts by one group to (re)define themselves or others, leading to new understandings of racial identities. Significantly, a crucial component of racial projects is the attempt to modify the relationship between the physical “signs” of race, including the shape, size, and form of the body and the traits to which they refer (Feagin and Elias 2013, 933). Said differently, a common goal of racial projects is to alter the meaning attached to particular forms of embodiment. This is often done in an effort to shore up or improve the racial group’s social position. The theory of racial formation can help us to understand the role of agents and their racial projects in shifting the meanings of bodily signs. In other words, we understand something about the who and how of the transformation of racial signs, signifiers and signified. But curiously, as exposed by Feagin and Elias (2013), there is little consideration of the role of power, or domination, in the racial formation perspective. That is, per Feagin and Elias, the racial formation theory obscures the power dynamic between racially dominant white people as powerful actors, and nonwhites. This, they assert, ignores the hierarchical nature of race relations as a system founded on embodied difference, “In general, mainstream and racial formation analysts neglect thoroughly and systematically studying the actual white architects and promoters of the USA’s systemic racism” (Feagin and Elias 2013, 938). Instead of jettisoning racial formation theory and the role of racial projects, it is possible to view Feagin and Elias’s work as adding a further element to the analysis. It shows that powerful actors (i.e., “white architects”) are often those engaging in racial projects that are largely responsible for the shifting bodily signs of race (Feagin and Elias 2013, 938; Hall and Jhally 1996). Hall and Jhally (1996), Omi and Winant (1994), and Feagin

Fat as a Floating Signifier   149 and Elias (2013) can help us understand how, and by whom, a particular physical feature can change meaning. This work suggests white architects challenge and attempt to shift the meaning of physical features (i.e., voluptuousness) in an effort to maintain racial hierarchies. Nevertheless, there remains an undertheorized element of herein: the role of gender. This is not for nothing. Scholars have long suggested that women are treated as “the body” (Spelman 1982). This has been the case, arguably, since the dawn of patriarchy (Lerner 1987). But significantly, women’s objectification as “the body” intensified during the eighteenth to nineteenth century, as there were a proliferating number of ways women were expected to maintain an appealing appearance (Herzig 2016). This was the same moment during which the “race-craft,” or racial projects by white architects who were attempting to (re)define the meaning of bodily signs, were at their height (Fields and Fields 2012; Stepan 1986). This suggests that attempts by elite actors to shift the racial meaning of a physical sign (e.g., plumpness) would have, historically, centrally involved women’s bodies.

Fat as Contested The contestation surrounding the racial meaning—and related aesthetic value—of voluptuous feminine figures can be partially attributed to the shifting notions of race in the nineteenth century. Carolus Linneaus had crafted one of the most widely disseminated racial cartographies in the world in the eighteenth century. In the 1758 edition of Systema Naturae, he ordered the races hierarchically, placing white people at the apex (Bohls 2013). Moreover, Linneaus made “European” and “white” synonymous, attributing to this group the qualities of pale skin, muscularity, and rationality. In the same text, Linneaus equated the terms “African” and “black.” He characterized people in this group as indolent, unintelligent, and significantly “indulgent” (Bohls 2013, 60). This purported relationship between blackness and indulgence was instantiated through repetition. It also appeared in the work of Linneaus’s protégé, Andrew Sparrman. Sparrman specifically claimed that black people were indulgent in food, as evinced in South Africa, where the “Negroes” he claimed “[have] no moderation in either eating or drinking, but whenever it is in their power, indulge themselves in either to the greatest excess (Kindersley 1777; quoted in Merians 2001, 177). Indeed, owing to the scientific racism suggesting a link between blackness and indulgence, there was a visible link made between blackness and fatness, and by the 1800s, “Africa and Africans would become closely linked with fat in the European cultural imagination” (Forth 2012, 221). But, in the early nineteenth century, in the context of conflicts between European nations (and in particular those between England and Ireland), a hierarchy within whiteness was devised. The new intrawhite hierarchy suggested that individuals of Germanic-English, or so-called Anglo-Saxon origin were the superior, “pure” white

150   Sabrina Strings group. The Irish were said to be of Celtic origin. The Celtic Irish were purportedly a “hybrid” white group, whose blood was corrupted by an ancient, if still perceptible, “Africanoid” ancestry. Importantly their black ancestry was made manifest by physical and behavioral signs affiliated with blackness, including skin color, laziness, propensity to indulgence, and body size. Esteemed British ethnologist James Cowles Prichard was one of the first race ­scientists to make such claims. In his 1841 book Researches into the Physical History of Mankind, Prichard described Anglo-Saxons as “robust” and fair-skinned. This robustness was intended to convey a vigor and strength of constitution, a firmness à la Linneaus. The Irish, by contrast, were deemed “swarthy” with “dark hair, dark eyes” (1841, 189, 391). Their stature was weak and small, as opposed to the vigorous outlines of the Anglo-Saxons. If their skin color and weak constitutions marked them as decidedly off- white, per Prichard, this was due to the fact that Celtic people are a part-white people who are racially kin to black Africans. “[W]hatever else they may be,” he writes of the Celtic Irish, “[they] are, in the first instance, African.” Other British theorists would make related claims. Scottish philosopher and essayist Thomas Carlyle, for instance, suggested that there was no racial distinction between Irish and black people. Carlyle famously lambasted the Irish for being lazy and indulgent. In his estimation, the Irish should have been “black leaded” and shipped off to work in the colonies (C. Hall 2000). Just as black people’s presumptive gluttony was believed to make them prone to ­obesity, by the nineteenth century the demi-African Irish too were thought to be unduly corpulent. One of the most revered ethnologists of Victorian England, John Beddoe, described the unruly, not “pure” white, bodies of the Celtic people. In his book The Races of Britain, Beddoe described the Anglos (English) and Saxons (Germans) separately. Nevertheless, Anglos were “tall, large, muscular” and “rounded,” and Saxons were “plump and rounded” (Beddoe 1885, 274–276). The Celtic Irish by contrast, being an “Africanoid” race, were short and lamentably “stocky” (Painter 2010, 215). Evidently, the reorganization of whiteness made the racial value of a plump form ambiguous. Racial discourse had long suggested that robust and rounded physiques were proof of white racial superiority. When Anglo-Saxonism was first articulated as a racial position, a certain robustness of outline was imputed into the category. However, “excess” in terms of eating and body size had been identified as an African trait. Therefore, the decreed stockiness of “Africanoid” Celtic Irish was used as evidence of their racial inferiority. In reality, there was no hard and fast mechanism to distinguish between a beautiful “rounded” form and gross “stocky” form. This, I argue, is how fatness itself became a floating signifier of race.4 That is, given the necessary ambiguity of the race-craft, the meaning of fatness (as beautiful or grotesque) became politically contested and unstable. In this context, various elites—those preferring what was sometimes called Anglo-Saxon affiliated robustness, and those who were averse to a fleshiness they deemed proof of racial inferiority—engaged in competing racial projects to either exalt or reject fat female bodies. The opposing racial projects, I suggest, were not inconsequential. They existed to offer further embodied proof of who could or should have access to the privileges and

Fat as a Floating Signifier   151 benefits of whiteness. As Cheryl Harris has articulated, whiteness has been “the basis for allocating societal benefits both public and private” as “the system of racial classification operated to protect entrenched power” (Harris 1993, 1709). In other words, the competing (racial) meanings of plumpness had, at its root, questions regarding the rights of citizenship, fellowship, and belonging in the American body politic (dually signified). According to Banner, the central figures implicated in the competing logics of fleshy forms as desirable or reprehensible were German (i.e., Saxon) and Irish (i.e., Celtic) immigrant women. The rounded body was used as alternately as a sign of women who were “one of us” or women who are “one of them.” Interestingly, elites on both sides of this debate, those treating plumpness as a sign of either “white” wealth and beauty or “Other” primitivity and depravity were using them as a means of consolidating the existing racial hierarchy and their position as Anglo-Saxons. In the following section, I detail my method for investigating whether and how fatness became, in the mid-nineteenth century, a floating signifier of race.

Methods To investigate whether fatness was a floating signifier of race among well-to-do Americans in the nineteenth century, I examined representations of women’s bodies in mainstream publications. Previous scholarship described Irish and German immigrant women as essential to this very contestation surrounding voluptuous forms (Banner 1983). Thus, I investigated representations of German women and Irish women from 1830 to 1890. This period encompasses the high period of contestation surrounding appropriate body size for elite American women, as well as the high-water mark for Irish and German immigration to the United States.5 I performed multiple archival searches. In the first round, I performed a keyword search for the terms “German AND plump” and “Irish AND plump” in Godey’s Lady’s Book. Godey’s Lady’s Book was the premier women’s magazine of the nineteenth century (Okker 2008). It was notable, among other things, for its advice to young middle-class women on proper appearance and comportment, which included dictates on correct diet, dress, and body size. I chose the term “plump” for the keyword search because during the nineteenth century this was commonly used when describing women’s appearance (Banner 1983). I was interested in examining any difference in frequency and or connotations in the usage of this term as it pertained to German versus Irish women. These terms yielded a total of forty-six results for all available years. I excluded from the analysis any hits in which the term surfaced in an article, but it was not used to describe the appearance of girls or women. Of these, seventeen proved relevant to the current analysis. In the second round, I performed a search of the terms “German girls AND fat OR stout,” “Irish girls AND fat OR stout” (849 hits), and for the terms “(German OR Irish) AND (fat OR stout) AND (girls OR women) AND (health OR gout OR dyspepsia6) in

152   Sabrina Strings Proquest Historical. The available newspapers for the search were San Francisco Chronicle, New York Times, Chicago Daily Tribune, The Washington Post, and Los Angeles Times. I selected to review only the first 100 hits of each search, as after this the pertinence to the topic reduced considerably. Again, I excluded from the analysis any hits in which the term emerged in an article but was not used to describe the appearance of women or girls. The Proquest searches yielded only sixteen total relevant results. The analysis that follows thus includes data from thirty-three articles.

Analysis This chapter builds on Hall’s depiction of race—and the qualities it signifies—as discursive, and therefore unstable. Therefore, I performed a critical discourse analysis of all thirty-three relevant articles. This involved reading each article carefully, attending to narratives pointing to any relationship between fatness, racial/national identity, beauty, ugliness, health, or illness. These qualities were chosen given that, as detailed earlier, there were competing views of the social value of fatness. Some believed fatness was a sign of health and/or beauty; others suggested it was sign of grotesquery and/or illness (Schwartz 1986; Stearns 1997). Thus, my objective was to examine if the qualities associated with fatness varied by the racial group under discussion. Following van Dijk’s (2015) analysis in Racism and the Press, I was primarily interested in what was being said about the connection between fat and immigrant racial minority groups during the period. I was further interested in how “white architects” (Feagin and Elias 2013) or “white in-group members tend to express and communicate their ethnic attitudes to other members of the group and how such attitudes are spread and shared in society” (Dijk 2015, 6). In terms of the who, the white elites who would have had access to the means of production during the nineteenth century would typically have been categorized as Anglo-American or Anglo-Saxon (Smedley 1993). I found the same number of articles describing the appearance of Irish women as compared German women (8 each). Of these, Irish women were much more likely to be described derisively (6 of 8, or 75 percent), whereas German women were somewhat more likely to be described positively (5 of 8, or 63 percent). Perhaps the most surprising finding was that a high number of articles describing fat women using these search terms produced results that were about the good qualities associated with fleshy AngloAmerican women (9 total). The remaining articles detail the horror of fat racial Others (black women = 1, Czech women = 1), fat American women as freaks (= 2), the beauty of English (i.e., Anglo) immigrant women (= 1), and the loveliness7 (= 2) or debility (= 2) of slender Anglo-American women. Overall, I found that that racial Others were more likely to be described negatively (8 of 10), and racial familiars positively (seventeen of twenty-three), regardless of weight. As it pertains to the specific concerns about what fatness signifies, I found the following themes to be most relevant: Fat as a sign of beauty, Fat as a sign of health, Fat as a sign of grotesquery.

Fat as a Floating Signifier   153

Fat as a Sign of Beauty The slight majority of the articles (17 of 33, or 52 percent) describe fleshiness as a sign of beauty. Of these, 15 (88 percent) describe white Anglo American or German American women. Most common were depictions of the former (9 of 15). Plump Anglo women were commonly depicted as comely and as possessing an air of gentility. Evidence of this comes from an article from Godey’s titled “Kate Leonard’s Great Match,” from 1866. The author, S. Annie Frost, says of Kate that she, [H]ad the tall, stately figure of her father’s family, rounded in the most beautifully developed proportions. Her dress was a rich garnet merino, fitting tightly over the bust, waist, and arms, and falling in full folds to her feet. A narrow collar and cuffs of lace relieved it, at throat and wrists. Her wealth of hair was made into a rich knot behind, and braided low on the glowing cheeks.

Kate’s figure is marked as attractive specifically because of its fleshiness. The fact that it is “rounded in the most beautifully developed proportions” is what provides its air of stateliness. Moreover, the exquisite garb of rich merino and delicate lace shows that Kate hails from a family of considerable means. While we do not learn much about Kate’s family outside of their apparent wealth, we do find that her last name is Leonard, a Germanic last name meaning “brave lion” that was believed to have made its way to England by the Normans.8 We can thus see how Kate Leonard’s rounded figure in this instance was a physical sign of wealth and beauty. That it is also described as “stately” and representative of her esteemed father’s family shows it also signaled their recognized status in the community. This portrayal of weight well-carried as regal was traditionally valued within the realm of elite femininity (Klein 2001). Kate’s opulent curves were described as beautiful and treated as a sign of her ­family’s wealth, Anglo-American heritage, and social standing. Indeed, in all of the  articles (9 of 9) in which the class status of attractive voluptuous women was mentioned, they were noted as being members of the cultivated classes. And, if the racial heritage was sometimes inferred, as in the Kate Leonard piece, in others it was stated outright. A case in point is a piece in Godey’s from 1849, “Falling in Love. A Bundle of Other People’s Experiences.” The author describes a “Mrs. Middleton . . . a regal-looking creature was she, with her grand figure, her pale, classic face and her languid attitude, as she half-reclined on a softly-cushioned sofa.” Mrs. Middleton’s “classic” face and “regal” frame while she lounges on a sofa clearly marks her as a member of the cultured classes. Moreover, Mrs. Middleton is lounging in the same room as a young woman “who was a short, plump, little figure, with a peculiarly English face and air—a fine bust and arm, lovely hands, a fair neck, blooming cheeks and lips, blue eyes and blonde hair.” Consider here the centrality of the young woman’s ethno-racial identity. That is, the young woman’s distinctive charms—her plump, attractive figure, lovely face, blue eyes, and blonde hair—are all connected to her “peculiar” Englishness.

154   Sabrina Strings All nine articles about fleshy, Anglo American women reveal that a rounded physique was, for these women, a physical sign, or “sign vehicle” (Goffmann 1959) for beauty. Fatness was attractive specifically when describing well-to-do women of Anglo descent, who fit seamlessly into an elite American community. It reveals a body privilege (Kwan 2009) that is patterned by gender, class, and ethno-racial belonging. And, if all nine articles lauded plump, high-class Anglo women, German women as so-called racial familiars (Painter  2010), were also frequently portrayed in a ­positive fashion. Five of eight (~63 percent) articles describing German women as fleshy viewed their proportions as praiseworthy. One noteworthy piece from 1876 published in New York Times, titled, “Beauty of German Women,” leaves no room for subtlety: German girls are often charmingly pretty, with dazzling complexion . . .[as is] the splendid matron, the sound, healthy, well-developed woman, who has lost no grain of beauty, and gained a certain magnificent maturity, such as we see daily with daughters who might well be her younger sisters.

Interestingly, the point of the piece is not just to praise the health and beauty of ­“well-developed” German women. The author is clearly invested in the racial project of promoting plump figures as the correct Anglo-American (ethno-racial and national) form of embodiment. In this way, German women are seen as potential models for their Anglo-American sisters (Banner  1983). Writing during an era in which relationship between body size and beauty was contested, he explains that when it comes to voluptuous figures, too many Anglo-American girls are falling short of the mark: “of such women the Fatherland has few specimens to show. The ‘pale, unripened beauties of the North’ do not ripen, they fade” (New York Times 1876). Godey’s too found much to praise in the curvaceous physiques of German women. In the 1833 piece included in the epigraph earlier, Ann Switzer is described as a woman with a “well-rounded, plump little figure” who comes from a local German town. But, although Ann is clearly from a rural area, and is not stated to possess the same air of refinement as the aforementioned plump Anglo-American women, she did come from a respected family, as her father was noted as a leading political figure in the town. Her plumpness, then, becomes a physical sign of beauty, given her standing in the community and racial (i.e., German-Saxon) identity. The articles in this category of analysis reveal that fatness was a “sign vehicle” for attractiveness specifically among Anglo and/or Saxon descended women. In other words, it was a facet of these women’s appearance that conveyed loveliness as a peculiarly racialized artifact. Said differently, fatness was a physical sign of beauty and a signifier of race. Attractiveness was the number-one quality signified by a plump woman of these (purportedly related) racial groups. But there was second, related, meaning to the fat female body for Anglo-Saxon women as represented in these data: good health.

Fat as a Floating Signifier   155

Fat as a Sign of Health The health of a fat woman’s body was celebrated in four of the thirty-three articles. In two of the four, the woman under discussion was an Anglo-American. In one, she was an English immigrant. In the remaining article, the woman was Irish and described in fashion that was explicitly Othering.9 In a Godey’s article from 1843 the author describes a group of country girls (seemingly native-born Anglo-Americans) who start going gaga for the new boy in town. The girls were described thusly, You always admire Rosanna Freeland and her sisters, —they have such blooming complexions, and such plump, healthful figures, which you have often told us was owing to the country air. There can be no doubt it would be much better for our health if we were to try it.  (Godey’s 1843)

In this piece, the voluptuousness of the Freeland girls was a physical sign for good health. The opulence of their physiques bespoke a dually signified “stoutness” of constitution. The linguistic unit of fat (sign), Anglo (signifier), and health (signified) deployed here represent the view of plump feminine figures that reigned prior to the mid-nineteenth century (Klein 2001). It is also worth mentioning that in this tale, these spirited country girls fall not just for any boy, but a German boy, who is described as “A young foreigner . . . German, upon my word.” In the assessment of the girls, he is “no doubt one of distinction . . . perfectly easy and gallant” (Godey’s 1843). This was an era during which there were considerable restraints regarding whom a woman might take as a partner, including those pertaining to race. The view that Germans might be not only acceptable, but sought after, speaks to their racial and social capital. There was only one article in these data that described a plump woman as healthy who was neither Anglo nor Anglo-Saxon, but in fact Irish. This piece, “Romance is Life” was from 1856 in the Chicago Daily Tribune. Per the author, “[m]ost of our citizens are acquainted with Ann Gleason, a stout, healthy, good-natured Irish woman who is frequently employed by merchants and owners of buildings to clean stores.” An Irish cleaning lady being complimented for her general affect and good health was a rare find. It was one of only two articles in the data to describe fleshiness, when found on an Irish woman, in a plauditory fashion. And yet despite this, the author places Ann outside of the imagined community of readers. The phrase “most of our citizens” marks Ann as decidedly outside the citizenry. Therefore, unlike the “perfectly easy and gallant” German boy who was a desired member of the community, the stout Ann is treated as a nonthreatening, good-natured appendage to it. Scholars have shown that a similar distancing and desexualized position attached to “Mammies,” or black housekeepers, who were commonly beloved even as they were prevented from full communal participation (Shaw 2006).

156   Sabrina Strings In the overwhelming majority of articles, positive relationships between fatness, attractiveness, and well-being applied to Anglo-Saxon American women or their supposed German kin. The individuals promoting this aesthetic were invested in the “racial project” (Omi and Winant  1994) of maintaining the association visible since at least Linneaus between whiteness, robustness,and beauty. Still, the relationship between the signs, signifiers, and signified of race are not fixed. All of the representational elements of race are unstable and constantly in motion (Hall and Jhally 1996; Omi and Winant 1994). In this way, it is not too surprising that there is some slipperiness that would allow for a rare (yet still racially Othered) Irish woman to land in the fold of a “good” fat woman. But, again, this was atypical. There were several articles written about fat Irish women found in these data. Most of them were derisive. In fact, it is the disparity between “good” Anglo/Saxon fat women and “bad” Irish and “Other” women that revealed the quality of fatness not just as a sign (with the fat body being a sign vehicle), but fatness as a floating signifier of race. That is, it is an abstract quality whose presence indicates different things, when applied to different racial groups.

Fat as Grotesque In thirteen of the thirty-three articles (39 percent), fatness was described with contempt. Eight of the articles using derogatory language (62 percent) described fat racial Others. Of these, six (6 of 8, or 75 percent) described stout Irish women, one described a big black woman, and a final described a fat Czech woman. An article exemplary of anti-fat sentiment comes from 1885. The essay “HeavyWeights: Not Fighters, but Females Whose Excess of Avoirdupois Makes Them Curiosities,” appears in the Chicago Daily Tribune (see Figure 9.1). The author profiles several women who participated in a fat women’s convention. Of the women, more than a few are marked as non-native-born or non-Anglo Americans. Two of the women are Prussian (i.e., German), and another is from Amsterdam. Yet another’s race is revealed largely through coy descriptors of her outfit and her admirers: “There is a suggestion of a verdure-clad hillock in Mrs. M. Kellogg of South Clark street. . . . She wears green in various shades and hues, and is almost certain to carry the bulk of the Irish vote.” Treating the color green as synonymous with Irishness is a well-worn trope. What may be less known to the contemporary reader is that a ­common way in which European and white American men in the nineteenth century attempted to insult racially Othered men was by the suggestion that they fetishized ­obesity, which was treated as a grotesque and primitive affectation (Forth 2012). Thus, not only is Mrs. Kellogg’s fatness treated with disdain, but her presence there and blatant attempt to win the “Irish vote” bespeaks a backward aesthetic position among Irish people generally. No other race of person received similar treatment in this article. Mrs. Kellogg’s (seemingly Irish) fatness carries meaning outside of itself. It serves as a sign of backward Irish aesthetic ideation and primitivity (Curtis 1997).

Fat as a Floating Signifier   157

Figure 9.1.  Heavy-weights: not fighters, but females whose excess of avoirdupois makes them curiosities. Source: Chicago Daily Tribune, 1885

This article is only one of the six making a connection between Irishness, barbarism, and fatness. Three of the six articles were found in Godey’s Lady’s Book. One of the Godey’s essays used in the introductory vignettes went so far as to question the humanity of fat Irish persons. In “Fanny McDermot,” the author describes an Irish family as oversized in both the number of family members and their physical proportions. She relates the scene of

158   Sabrina Strings an entire Irish family, father, mother, half a dozen children, more or less, with a due allowance of cousins, all plump, rosy, and thriving (in the teeth of the physical laws), on plenty of heterogeneous food, and superfluity of dirt.

While the multitude of Irish children is described as “thriving,” it is only in the most limited sense, or “in the teeth of the physical laws.” More to the point, they are marked as multiplying rapidly, eating a good deal, and being filthy. They are presented as not just outside of polite society, but arguably scarcely human. The titular character of the essay, Fanny, is asked, “Did not I hear you talking on the stairs, yesterday, with some of them Irish cattle?” Seemingly guilty, Fanny makes no reply. The accuser continues, “I won't have it, Fanny; you're no company for Irish, and never shall be; the Lord made ’em, to be sure, but that is all; you can scarce call them human creturs (sic)” (Godey’s 1845). The caricature of the Irish as filthy, boisterousness, enjoying food and drink, and prone to procreation has been noted by other scholars (Curtis 1997; McClintock 2013). We find within this anti-Irish medley that their corpulence (i.e., sign) is an integral part of their savagery (i.e., signified). As noted by Hasia Diner (1983) and others, Irish women were very commonly domestic servants for Anglo-Saxon women. In the present study, only one relevant article made explicit (and derogatory) reference to a fat Irish maid. In an essay in Godey’s from 1853, titled “Henry Morely. Chapter 1,” the author describes Henry’s Irish maid as such: Biddy . . . has become quite an important personage in and about the sick room of Henry. We hear of waving auburn hair, of chestnut tresses, silken, golden ringlets, and jetty masses of luxuriant hair. Now Biddy's locks were the color of a fallen, faded oak-leaf, and in flexibility resembled the wisps of a pine bough. In figure, she could scarcely be called either sylph, fairy, or seraph-like, as she was trop d'embonpoint to answer either description. Her complexion was extremely florid, and her large gray eyes shone out beyond her plump cheeks like between black clouds. (Godey’s 1853)

“Biddy” was evidently not the woman’s name, but a derogatory moniker of womanhood that was commonly applied to Irish women during the era. This “Biddy” had nothing in common with a good-looking gal. Good-looking girls had luxurious hair, while hers was “wispy.” In a move that reinscribed the slender ideal that some authors during the era challenged, we find that a pretty lady will be “either sylph, fairy or seraph-like.” This was not Biddy. She was “trop d’embonpoint” a French expression meaning “too fat.” Her entire manner was the opposite of beautiful; it was foreboding, as even her eyes “shone out beyond her plump cheeks like between black clouds.” From the texts on Irish women, we find a clear link showing the fat body as a sign for savagery. Whether identified as primitive, unattractive, and/or ominous, fatness was more likely to signify grotesquery when related to Irish women than any other group of women who appeared in these data. The authors of articles vilifying fat Irish women were invested in the competing, post-nineteenth-century “racial project” of linking fatness to an “impure,” qua ancestrally part-black, whiteness.

Fat as a Floating Signifier   159 For these reasons, I would be remiss if I did not mention the sole article on black women that materialized in the data.10 The essay appeared in the New York Times, from 1874, and was titled “Colored Women: Types of Southern Character.” The article delivers precisely what it promises: a consideration of the author’s estimation of the different forms and features of black femininity. It begins, “No close observer who visits Huntsville . . . can fail to appreciate the significance of the term ‘colored women.’ ” With an emphasis on the plural “women,” the author intends to show us how the variation among the group of “colored women.” Per the author, all “colored women,” are not created equal. They should, be, per the author, hierarchically ordered. At the lowest of end of the spectrum are fat, dark-skinned women, such as one woman he saw in Huntsville: “In one corner a fat old creature may be seen seated beside a chestnut stove her face as black as the coal she puts into the fire.” Invoking, again, the image of an agamic Mammy, this woman’s weight, age, and dark skin are yoked together in what Saussure might call a linguistic unit (Sharpe 2010; Shaw 2006). The unity of the trio is freighted with disgust. As I have tried to show throughout, the actual size of the body (the sign) is never in itself the point. It is the combination weight and race (sign and signifier) that leads racially Othered (e.g., Black and Irish) women to be grotesque and primitive. Plump Anglo/Saxon women were signified as beautiful and healthy. This text provides a useful reminder that part of the fear of the fat Irish body was that Irish people were also “Other,” and of purported low, coarse African blood. When Anglo-Saxon blood is added to the mix, even the fat Irish could be considered lovely. This is borne out in the data, as the one lonely article to depict fat Irish women as beautiful comes from an 1888 Washington Post piece titled “Artists’ Models in Boston: Many Called and Few Choses—Their Pay and Their Duties.” The column runs: The supply of young girls with really good figures who are willing to pose never equals the demand. Any young beauty can obtain employment of this sort in Boston. [Several] are Irish-American—that cross breed so productive of plump figures and pretty faces—and so on. These are the handsome women of the modern Athens. The indigenous race does not go in much for beauty.  (Washington Post 1888)

The “indigenous race” here seems to refer to the women of modern Greece. At that time, Greeks were also racial Others, being considered part of another quasi-African breed, the “Mediterranean” race, per late nineteenth- early twentieth-century race science (Brodkin 1998; Painter 2010). Per the author of this Washington Post disquisition, the addition of pure white Anglo-Saxon (i.e., “American”) blood gave the plump Irish “cross breed” their glory.

Conclusion Fatness overwhelmingly signified health and beauty when related to Anglo/Saxon women (including German women) and grotesquery when related to Irish/Other

160   Sabrina Strings women. I argue that this reveals fatness as a floating signifier of race. In other words, the fat body (as a sign) would not have any specific meaning by itself—it was roving. But, once it was applied to a particular racial group, it became imbued with positive or negative valuation (signified). Since fatness in women, during the mid-nineteenth century, only had meaning when attached to the race (signifier), and shuttles between races constantly (Saussure 2013). And, since the qualities of a linguistic unit can shift and move, we can understand how fatness itself becomes a floating signifier of race. But the intervention here is not just in the semiotic nature of the embodied elements of race, which we already knew from Hall and Jhally (1996) were changeable. We learn how, when, and by whom they shift. Here, they changed—at least in part—as a result of global dispersion of persons, which led to a rearticulation of racial categories and identities in Europe and the United States. At that historical moment, the mid- to late nineteenth century, the character of the American republic was itself shifting. And elite white persons, or per Feagin and Elias (2013), “white architects,” engaged in competing “racial projects” (Omi and Winant 1994) to promote the traditional, Old World European view of opulent beauty, or the newer fear of fatness as linked with racial primitivity. It is important to state here that racial projects are not social movements. They do not necessarily involve an organized group of actors sharing an identity, cause, or purpose, or advancing a particular goal. In this way, the unallied individual journalists and essayists, described here as “white architects,” can be identified as engaging in racial projects. Indeed, “individuals’ practices may be seen as racial projects” so long as they reflect and respond to “the broader patterning of race” in society (Omi and Winant 1994, 125). There are some limitations to this study. The first is sample size. Despite having reviewed hundreds of articles, very few related to race, weight, and beauty arose in the mainstream press. Future studies using digitized archives are needed to see if a keyword search leads to greater precision. Second was the use of two different databases. But significantly, I did not find any difference in the association between weight and race across publications. Third, there was no way to tell from these data if German or Irish women were, in fact, as Banner suggested and I am working from, all immigrants. But that may be less of a problem than it seems. Given their high level of immigration as a group, whether they were all immigrants, or only described in ways that marked them as perpetually “foreign”—as Latinx persons are commonly described in America today—nevertheless reveals them to be outside the purview of American citizenry and thereby alien (Jiménez 2010). The latter point is critical. As Banner and many other scholars have shown, by the turn of the twentieth century, the battle over the “right” look for American women had subsided. The competing projects presenting the racial value of fleshiness of the midcentury faded, ceding to the view of fatness as evidence of racial alterity. As the view that fatness (sign) was evidence of blackness (signifier) and thus grotesquery (signified) became codified by the early twentieth century, slenderness became the more favorable form of embodiment for Anglo-Saxon American women.

Fat as a Floating Signifier   161

Notes 1. Banner does recognize that there were differences in the reception of Irish and German immigrants. She argues that “in contrast to the Irish, viewed as unkempt and wild, the Germans generated a positive image” (1983, 58). But again, she describes this difference in gender and class terms. 2. In the work of Ferdinand de Saussure, there are three parts to a linguistic unit: signs, signifiers, and signified. The sign is the physical object, in this case the fat body. The signifier is the concept, in this case, the racial group. The signified are the qualities, in this case either beauty or ugliness, health or illness, self-care or self-indulgence. 3. He commented elsewhere that dominant racial groups make the effort to box-in ­subordinated groups in ways that delimit their social mobility (S.  Hall  1980; Hall and Jhally 1996). Nevertheless, we do not understand from this when and how racial categories and meanings evolve. 4. Because there is no logical relationship between physical objects and concepts, signs and signifiers are constantly shifting, or “floating,” as are the qualities that are signified. And, because the components of a linguistic unit do not have a one-way relationship, physical signs (e.g., fatness) may themselves become signifiers (Saussure 2013). 5. Germany and Ireland were the no. 1 and no. 2 immigrant-sending countries, respectively, during the nineteenth century (Painter 2010, 138). 6. During the nineteenth century, dyspepsia, typically referred to today as indigestion, was one of the most commonly discussed and treated illnesses. It was believed to be caused by immoderate eating. 7. As the codes were not mutually exclusive, one of them in this category overlapped with one in the category of fat Anglos as good, since slenderness and plumpness were both praised. 8. See https://www.ancestry.com/name-origin?surname=leonard. 9. In all of the pieces describing the relationship between fat and good health, none of them in these data described German women. This was somewhat surprising, as the health of plump German women had been praised by doctors at the time, including the eminent Dr. George Beard, as detailed by Lois Banner (1983). 10. In works currently under preparation, I explain that it was rare for black women to be discussed in nineteenth-century publications about beauty. Being that they were enslaved for much of the time in question, and confined to the South, they were not often mentioned in most northern-originating periodicals with a broad readership.

References Banner, Lois W. 1983. American Beauty. 1st ed. New York: Knopf. Bohls, Elizabeth. 2013. Romantic Literature and Postcolonial Studies. Edinburgh: Edinburgh University Press. Bordo, Susan. 2003. Unbearable Weight: Feminism, Western Culture, and the Body. Berkeley: University of California Press. Brodkin, Karen. 1998. How Jews Became White Folks and What That Says about Race in America. New Brunswick, NJ: Rutgers University Press. Cornell, Stephen E. 1998. Ethnicity and Race: Making Identities in a Changing World. Sociology for a New Century. Thousand Oaks, CA: Pine Forge Press.

162   Sabrina Strings Curtis, L. P., 1997. Apes and Angels. 2nd ed. Washington, DC: Smithsonian. Dijk, Teun A. van. 2015. Racism and the Press. New York: Routledge. Feagin, Joe, and Sean Elias. 2013. “Rethinking Racial Formation Theory: A Systemic Racism Critique.” Ethnic and Racial Studies 36, no. 6: 931–960. Fields, Barbara Jeanne. 1990. “Slavery, Race and Ideology in the United States of America.” New Left Review 181, no. 1: 95–118. Fields, Karen, and Barbara J. Fields. 2012. Racecraft: The Soul of Inequality in American Life. New York: Verso Books. Forth, Christopher. 2012. “Fat, Desire and Disgust in the Colonial Imagination.” History Workshop Journal 73, no. 1: 211–239. Friedan, Betty. 1963. The Feminine Mystique. New York: W. W. Norton. Glenn, Evelyn Nakano. 1999. “The Social Construction and Institutionalization of Gender and Race.” In Revisioning Gender, edited by M.  M.  Feree, J.  Lorber, and B.  B.  Hess, 3–43. Thousand Oaks, CA: Sage. Hall, Catherine, ed. 2000. Cultures of Empire: Colonizers in Britain and the Empire in the Nineteenth and Twentieth Centuries: A Reader. New York: Routledge. Hall, Stuart. 1980. “Race, Articulation and Societies Structured in Dominance.” In Sociological Theories: Race and Colonialism, edited by United Nations Educational Scientific and Cultural Organisation, 305–345. Paris: UNESCO. Hall, Stuart, and Sut Jhally. 1996. Race: The Floating Signifier. Northampton, MA: Media Education Foundation. Herzig, Rebecca M. 2016. Plucked: A History of Hair Removal. New York: NYU Press. Jiménez, Tomás Roberto. 2010. Replenished Ethnicity: Mexican Americans, Immigration, and Identity. Berkeley: University of California Press. Klein, Richard. 2001. “Fat Beauty.” In Bodies out of Bounds: Fatness and Transgression, edited by Jana Evans Braziel and Kathleen LeBesco, 19. Berkeley: University of California Press. Kwan, Samantha. 2009. “Framing the Fat Body: Contested Meanings between Government, Activists, and Industry.” Sociological Inquiry 79, no. 1: 25–50. doi:10.1111/j.1475-682X .2008.00271.x. Lerner, Gerda. 1987. The Creation of Patriarchy. New York: Oxford University Press. McClintock, A., 2013. Imperial Leather: Race, Gender, and Sexuality in the Colonial Contest. New York: Routledge. Okker, Patricia. 2008. Our Sister Editors: Sarah J. Hale and the Tradition of Nineteenth-Century American Women Editors. Athens: University of Georgia Press. Omi, Michael, and Howard Winant. 1994. Racial Formation in the United States: From the 1960s to the 1990s. New York: Psychology Press. Painter, Nell Irvin. 2010. The History of White People. 1st ed. New York: W. W. Norton. Saussure, Ferdinand de. 2013. Course in General Linguistics. London: A&C Black. Schwartz, Hillel. 1986. Never Satisfied: A Cultural History of Diets, Fantasies, and Fat. New York: Free Press. Sharpe, Christina Elizabeth. 2010. Monstrous Intimacies Making Post-Slavery Subjects. Perverse Modernities. Durham, NC: Duke University Press. Shaw, A. E., 2006. The Embodiment of Disobedience: Fat Black Women’s Unruly Political Bodies. Lanham, MD: Lexington Books. Smedley, Audrey. 1993. Race in North America: Origin and Evolution of a Worldview. Boulder, CO: Westview. Spelman, Elizabeth. 1982. “Woman as Body.” Feminist Studies 8, no. 1: 109–131.

Fat as a Floating Signifier   163 Stearns, Peter N. 1997. Fat History: Bodies and Beauty in the Modern West. New York: New York University Press. Stepan, Nancy Leys. 1986. “Race and Gender: The Role of Analogy in Science.” Isis 77, no. 2: 261–277. Wolf, Naomi. 1991. The Beauty Myth: How Images of Beauty Are Used against Women. New York: William Morrow.

chapter 10

A n i m a l , M ech a n ica l , and Me Organ Transplantation and the Ambiguity of Embodiment Gill Haddow

“A Czech story tells of a blind man who asked for the eyes of a young girl and was given instead, in secret substitution, the eyes of various animals. Each time, he saw what the animals saw: when he was given the eyes of fish, he saw fins and scales; when he was given the eyes of birds, he saw the sky and clouds. This story reflects the widespread folk belief that when you see with someone’s else’s eyes, you see what that creature sees; more broadly, when you are given someone else’s organs, you take on that person’s personality in some way”

(Doniger 1995, 202).

The transference of qualities between humans and animals, described in the Czech folk story above, shares similarities with the alterations in subjectivity reported by some human organ transplant recipients. Changes in gender or behavior, a resurgence of youth, or discovering new tastes and preferences are often attributed by transplant recipients to the act of taking an organ from one person and transplanting it into another (Fox and Swazey 1974, 1992; Pearsall et al. 2002; Sharp 1995; Simmons and Klein 1987; Sylvia and Novack 1997). If such an alteration is said to happen in the case of human-to-human organ transplant, could similar alterations in subjectivity happen if an organ from a pig were ever to be transplanted into a human? Would a person expect to inherit pig-like characteristics? What about mechanical implants? If an implantable device changed an individual’s body to part-machine, would it make her feel robotic as a consequence? Alternatively, what if a replacement organ could be grown from the recipient’s own cells? Would a recipient feel different after implantation of such an organ?

166   Gill Haddow While human organ transplantation from deceased or living donors is in widespread use, other kinds of transplantation are still mostly speculative. Using organs from animals—a procedure known as xenotransplantation—remains experimental and ­ largely unsuccessful. Replacing entire organs, such as the heart, with implantable devices, is a rare occurrence, used only as a stop-gap measure until a human organ can be transplanted. Use of three-dimensional (3D) bioprinted organs (made up of the patient’s own cells) has recently received publicity as a potential procedure to alleviate the shortage of human organs, but it has yet to be tested in humans. In this chapter, I discuss people’s reactions to imagined encounters with these technologies. I asked people to consider (1) what they would prefer if given a hypothetical choice between human, animal, and mechanical transplantation; (2) whether they thought changes in their ­subjectivity could happen as a result of receiving a transplant; and (3), if so, whether they felt that the change in subjectivity would vary depending on the source of the transplanted material. My intention in this chapter is to highlight how the answers to those questions illuminate the relationship that people experience with their bodies—how they experience “embodiment,” in other words. The data in this chapter are drawn from a mixed-method study conducted in 2016 in the United Kingdom, comprised of four focus groups followed by a representative survey questionnaire with young people. The focus groups helped elucidate the five options (deceased human organ donation, living human organ donation, xenotransplantation, mechanical devices, and 3D bioprinting) that were then presented to over one thousand young people in a questionnaire. The data are part of a larger Wellcome Trust–funded study called “Animal, Mechanical, and Me: The Search for Replaceable Hearts” (2013–2018). The study results demonstrate that individuals believe that using different kinds of materials to replace or regenerate human organs could cause different changes in subjectivity. Our data, both from the focus groups and the survey, suggest that xenotransplantation would be hugely unpopular. Partly, this is due to concerns about the ethical treatment of animals as well as thoughts about physiological, functional, and immunological compatibility with humans. The qualitative and quantitative findings show pigs—the species scientists most commonly cite as a candidate for growing humancompatible organs—were thought to be “dirty.” But xenotransplantation was also seen to have adverse implications for the subjectivity of the individual recipient, and more generally for human beings as a species. 3D bioprinting of organs and transplantation from a living known donor emerged as the preferred options both in focus groups and among survey respondents. The popularity of 3D bioprinting highlights the desire to maintain the borders that separate human beings from other species, as well as the boundaries of the individual’s own body—hence participants’ descriptions of 3D bioprinted organ as “your own,” “part of my body,” “part of me,” and “my own cells in my own life.” Such responses indicate that participants saw 3D bioprinting as compatible, in terms of species, biology, and identity, with maintaining boundaries that they believed would be transgressed with xenotransplantation.

Animal, Mechanical, and Me   167 The data also showed that the option of implanting mechanical devices would be less popular than the possibility of 3D bioprinted organs. Respondents were concerned at the possibility of mechanical breakage and malfunction. But they also mentioned ­potential changes in subjectivity with mechanical implants: “you’d feel like a robot or a freak,” “makes me less human,” and “because I don’t want a machine inside my body.” These anticipated changes in subjectivity differed from those associated with xenotransplantation, however. Replacing organs with a mechanical equivalent was associated with a loss of human identity, whereas the idea of xenotransplantation prompted fears that a recipient could gain animal attributes. In what follows, I first outline the current status of whole organ replacement focusing on the three real and imagined biotechnologies: xenotransplantation, implantable medical devices, and 3D bioprinting. Next, I describe the mixed-method approach taken for this study. In the third section, I present the findings, drawing out key figures, statements, and discussions from the participants’ accounts of their preferences for animal, mechanical, and human transplantation. Finally, I discuss these findings, focusing on what the imagined changes in subjectivity alterations can tell us about a person’s everyday experience of embodiment. If a person experiences herself as distinct from her body—possessing a body as she would a car say—then she does not imagine her subjectivity changing when her body is modified. If a person experiences her body as closely intertwined with her personal identity, then she is more inclined to suppose that body modification will result in a change in subjectivity. However, these categories of ­embodiment—“I have/have not” versus “I am/am not” my body—are fluid and dynamic experiences and never as static as this dichotomy suggests. I therefore argue that embodiment is an ambiguous experience—and one, moreover, that is being confronted with new techno-scientific interventions to repair, replace, or regenerate the human body in pursuit of gains in the length and quality of life (Haddow 2015a).

Organ Replacement Technologies: The Current State of Play Animal: Xenotransplantation At the moment, human organ transplantation is widely used as an effective means of repairing and replacing an individual’s failing organs. However, this effectiveness is ­limited by the shortage of human donors. Attempting to use whole animal organs, a procedure called xenotransplantation, remains a highly experimental procedure and there are no successful cases of it to date.1 Some individuals live with small amounts of ­animal-based products in their bodies (such as bio-prosthetic heart valves and porcine islet cells). But this has not proved possible with whole organs, as animal organs maintain

168   Gill Haddow their cellular structures, making them liable to attack by the recipient’s immune system. Clinical and ethical attention to xenotransplantation continues, however, driven partly by researchers’ interest in exploiting the biological similarities between human and ­animals. Pigs are preferred due to their comparable organ size, while appearing to raise fewer ethical concerns than using primates. An early report into ethical and social questions around xenotransplantation was conducted by the United Kingdom’s Nuffield Council (1996) and emphasized how clinical trials of xenotransplantation might proceed in an ethical and responsible manner (Fovargue 2007) while preserving “human dignity” (Degrazia 2007). However, the report highlighted concerns over disease control (e.g., porcine endogenous retrovirus) that would require close monitoring of individuals (Nuffield Council on Bioethics 1996). It also suggested that: It is difficult to predict how people’s views of their bodies and of their identities might be affected by xenotransplantation. On the one hand, the use of animal organs might eliminate any disturbing implications associated with receiving a human organ. On the other hand, receiving an animal transplant might cause different stresses. The response is likely to reflect the emotions of what it is to be a person, to be human, and to be an animal. These notions are not uniform for this or any other society, but vary according to social and cultural background. (Nuffield Council on Bioethics 1996)

Due to the lack of success with xenotransplantation, little is known about how modifying the body in this way might alter the identity of the recipient. Early work examined the narratives and reactions of a number of patients who received porcine islets for the treatment of diabetes, and it found a minority of patients relating anxieties about the transference of animal qualities (Lundin 1999, 2002; Lundin and Widner 2000). One diabetic patient who had received porcine islets reflected: “It feels like something big and meaty. And I am wondering what way it can change me as a person. Yes, not that I’ll develop a tail or anything like that—but that something will happen to me all the same” and “Like small piglets . . . tiny pig cells that I have no control over and that can pump something animal like into my body” (Lundin 2002, 337) although studies have also found little concern, however (Idvall 2006; Lundin 2002; Teran-Escandon et al. 2005).

Mechanical: Implantable Medical Devices Implantable medical devices are becoming smaller, cheaper, and far more advanced (Haddow et al. 2015; Harmon et al. 2015). Semiautonomous and (partially) implanted devices range from cochlear and retinal implants, neurobionics, deep brain stimulators, neuroimplants, vagus nerve stimulators, pacemakers, and left ventricular assist devices (LVADs), to artificial pancreases and implantable cardiac defibrillators (ICDs). Even the entire human heart can now be temporarily replaced with a mechanical substitute. SynCardia, an American biotechnology company, reports implanting over a thousand total artificial hearts (TAHs) as bridging devices until a human heart transplant can be

Animal, Mechanical, and Me   169 found (http://www.syncardia.com/). These TAHs are increasingly being relied upon for longer periods of time as a destination therapy, for example when a heart transplant has been ruled out. Whereas xenotransplantation has failed due to problems of organ ­rejection, implantable mechanical devices can cause infection as well as sometimes ­failing themselves: As of 2011, 47 patients had been supported with a SynCardia TAH for greater than one year worldwide. The mean support time was 554 days . . . Device failure occurred in 10% of patients. Systemic infections were observed in 53% of patients, driveline infections in 27% of patients, thromboembolic events in 19% of patients, and hemorrhagic events in 14% of patients.  (Cook et al. 2015, 2178)

In addition to these problems, there is also the inconvenience of a power supply to be carried around in a rucksack by the recipient (Standing et al. 2017). The few patient testimonials available on the SynCardia website are superficial and positive, making no mention of infection or inconvenience; for example, see https://syncardia.com/patients /home/. Despite the risk of infection and malfunction, studies report that, hypothetically at least, individuals are more likely to accept a medical device for organ replacement, ­preferring it to animal parts. Despite small numbers and selective participants, in Sharp’s study of fifty undergraduates, she found that the majority preferred human organs, followed by mechanical, with none choosing an organ from a baboon (Sharp 2006). A few of her survey respondents reflected on why they would prefer a mechanical option, declaring for instance that “Nobody’s used it before me and infected it” (Sharp 2006, 229). A few of Sharp’s respondents worried about taking on characteristics of the baboon, suggesting that “If it all worked equally well, I wouldn’t care. Though it would be a little strange to have a baboon heart. Would I start baring my teeth and ­bottom?” (Sharp  2006, 232). Sharp attributes these responses to an “aversion to . . . strangeness, monstrousness, and hybridity . . . to the imagined possibilities borne by xenotransplantation” (Sharp  2006, 240). A study of the Swedish public found that 77 percent said they would be more willing to accept an organ from a relative, 69 percent from a deceased person, 63 percent an artificial “organ,” and 40 percent an animal organ (Sanner  1998,  2001,  2006). These comparative studies showing the unpopularity of ­animal organs compared to mechanical devices are important. However, they do not identify the pig as the most likely organ source, as is currently the case. Nor do these studies include recent innovations such as 3D bioprinting as an option (Kranenburg et al. 2005).

Human: 3D Bioprint Me? Proponents argue that, if successful, 3D bioprinting could avoid the challenges of rejection and immunosuppression that xenotransplantation raises, as well as the risks of infection and malfunction that mechanical devices pose. 3D bioprinting of organs

170   Gill Haddow would take personalized medicine to a new level, offering the possibility of on-demand printing of organs grown from an individual’s own cells. Specialized printers use ­biological inks (such as differentiated-, human embryonic-, or induced pluripotent stem cells [iPSCs]) to print layers of living materials one slice at a time, one on top of another (Vermeulen et al. 2017). “[A]chieving the desired level of cell density, effective vascularization and accelerated tissue maturation are remaining challenges,” however (Mironov et al.  2011, 669). The risks of the procedure, especially using iPSCs, are unknown and have never been attempted for fear that the procedure could prove fatal (Vermeulen et al. 2017).

Methods Focus Groups and Questionnaires In 2016, we conducted four focus groups followed by a representative survey of young people, in order to explore people’s beliefs about using human, animal, or mechanical biotechnologies to replace failing human organs. The focus group study was conducted first, primarily to explore questions and issues about embodiment and biomedical ­technology that could be discussed generally, and then to identify and operationalize questions specifically for the later survey. The focus groups were purposively sampled for age, religion, sporting activity, and familiarity with technology—demographics that we believed might influence participants’ responses to the questions about the hypothetical use of animal, mechanical, or human organs. Identification of group members was based on the following primary characteristics: (1) being older and therefore pre-Internet citizens in the case of the over 65 years of age focus group; (2) “technology embracers” such as members of a computer gamer club; (3) individuals focused on body work such as the University competitive fencers who were recruited to a focus group; and finally (4) individuals with known ­religious views regarding the consumption of meat, hence inclusion of members of a University’s Islamic faith group. Individual participants’ identities did not match one to one with these chosen characteristics, varying by experiences, demographics, and ­interests. For example, Roy in the over-65 group and a “pre-Internet citizen” was also a committed lifelong vegan, which strongly affected his views of xenotransplantation. The focus group discussions took place in a mutually agreeable location generally lasting an hour and a half. On average, there were about five members in each group. Areas of discussion began with exploring ideas about the relationship an individual has with his or her body, followed by conversations about human organ transplantation and willingness to accept novel technologies such as xenotransplantation and 3D bioprinting.2 The focus groups also generated data through the unique interactions between ­participants and therefore offer important data.3 The focus group data also helped inform the next phase of data collection, elucidating the options to be offered to a ­representative survey of young adults.

Animal, Mechanical, and Me   171 A total of 1,550 young people between 11 and 17 years of age were targeted as survey respondents. We recruited young people as they are thought to be more open to technoscientific solutions given their status as Internet citizens.4 The survey question was phrased as follows: Sometimes people’s organs (e.g., their heart or their liver) can stop working properly. If this happens, they need to have that organ replaced. Imagine you needed to have an organ replaced because it wasn’t working properly, how would you want it replaced? Please rank the following options from 1 to 5 in order of preference (1 being the option you most prefer and 5 being the option you least prefer). An organ taken from a pig; A mechanical device that did the work of the organ; A spare organ taken from someone you knew who was alive; An organ grown from your own cells in a laboratory; An organ taken from a stranger who has recently died; Don’t know; Prefer not to say.

The responses to this question were analyzed using SPSS v.11.5. Survey respondents were encouraged to give additional open comments at the end of the questionnaire explaining their choice. Open comment responses were analyzed by categorizing and quantifying in Excel. The findings that follow draw on data from both the survey results and the focus group discussions.

Results All the Humans: It Has To Be Me, You, and Then Someone Else The results from the survey (see Table 10.1) demonstrate a majority of the young people in the survey suggesting the most popular choice for organ replacement was an organ grown from their own cells in the laboratory (3D bioprinting) (n = 345). All the human organ options were the most popular in the focus groups and the survey. Living donation (n = 336) and 3D bioprinting (n = 345) were far more popular than deceased organ donation (n = 179). This is surprising given the reliance on deceased human organ transplantation procedures carried out today. There appeared to be two reasons for this response. It was partly because the organ would come from a stranger and, as survey respondents suggest, “I don’t know the person or how they lived their life,” “because it seems risky and I wouldn’t know their past”; and also because the organs came from a deceased donor: “Because they are dead and that’s weird,” “I don’t like the thought of someone’s dead organs in me they wouldn’t work,” and “it would be kind of gross to have a complete stranger’s organ in your body.” For those who supported

172   Gill Haddow

Table 10.1.  How Would You Most Want the Organ Replaced?   An organ taken from a pig A mechanical device that did the work of the organ An organ taken from a stranger who has recently died A spare organ taken from someone you knew who was alive An organ grown from your own cells in a laboratory

Frequency

Percent

25 123 179 336 345

1.6 7.9 11.5 21.7 22.3

  Don’t know Prefer not to say Total

 

 

407 135

26.3 8.7

1550

100.0

deceased donation, the main reason for preferring it was “because the person was dead” and the “organs would not go to waste.” No mention was made about subjective changes due to modification of the body through deceased organ donation, either in focus groups or by survey respondents. Overall the human connection was preferred, as Muriel in the over-65 group suggests: “I would prefer to have something that is connected in some way to a human being either past or present or manufactured from something in the . . . Well, just having a connection to a human in some way, even it was made from cells cultured in the lab originally.” Indeed, 3D bioprinting was very popular. Statements in the open comments of the survey reflected the perceived importance of being human, being from “my own cells,” “it was your own,” “part of my body,” “part of me,” “my own cells in my own life,” from “my own body and not from someone else’s,” “my own body, nothing else,” “they come from me.” However, 3D bioprinting was also believed to be a future luxury and an option for only those that could afford it. Diana, in the University Islamic group, pointed out that this would be an expensive first-world option: I think I would of course prefer my own stem cell and my reason is like what I pointed out earlier, sometimes our body rejects a new organ, someone else’s stem cell might have a different reaction, there is a risk, the issue of risk, but however, going back to the initial stem cells in, yes, I would prefer that, but on the other hand I think it’s quite an exclusive option because there are many countries, we cannot afford such technology, and we have to depend on a human donor, so it’s great, but it’s very limited in how it reaches up to people, and there are a lot of people who are in need of organs, and probably people from a first-world country could develop this technology. The only thing your own stem cells do for organs that can be in turn donated to people who cannot afford it in third-world countries, I think that’s a great option, yeah.

In sum, use of 3D bioprinting and using organs from a known living individual are the most preferred imagined options, although the data overall indicate an interest in receiving an organ from any human being. Ideally, organs that are transplanted are

Animal, Mechanical, and Me   173 human, and they come from the self or as close to self as possible and a known living donor, although an organ from a deceased stranger will do. As I turn to next, animal transplantation simply will not do.

Pigs, People, and Pollution When the topic of xenotransplantation was introduced, participants in both focus groups and survey respondents made ethical statements about protecting animals from cruelty, abuse, and suffering, invoking principles of fairness and sympathy. In the survey’s open comment section, mentions about the pig’s status as dirty and unclean were numerous. Examples such as “It’s yuck, disgusting, gross, unclean” and “It’s a farm animal with a very unhealthy diet.” Words commonly used were disgusting, not natural, grim, vile, and rank. Often the response was stated baldly and simply: “It’s a pig.” No additional justification was offered, as the statement was presumed to be self-explanatory. Individuals also shared concerns about the human body’s ability to reject what it perceives as foreign. In the fencers’ focus group, Zoe discussed the greater amounts of immunosuppressants she thought would be required for the recipient’s body to accept a nonhuman animal organ: If it was a last resort, I would definitely accept an animal organ. But I would accept a human organ over an animal organ if they were both available. Because even if it was like perfectly functional, the same, but there are risks associated with animals because they are different, physiologically. So, if you get down to like cellular level with all the receptors and everything, it means you have to be on . . . I know you have to be on immunosuppressants in a human, but you have to be on more, I think, with an animal.

There was also sociocultural antipathy to xenotransplantation. Results from the survey sample showed no difference in attitudes toward xenotransplantation between those who said they ate meat and those who said they preferred not to (46 percent versus 48 percent). Some authors have argued that it is ethically acceptable for Muslims and Jews to accept pigs as substitute organ donors despite religious instruction not to eat pork (Welin and Sandrin 2006). The survey results do not support this position however. None of the young adults who identified as Muslim (n = 27), Buddhist (n = 10), Sikh (n = 3), Jewish (n = 3), or Pagan (n = 5) chose the xenotransplanted option. In the following exchange between Assad and Halima in the University Islamic Group, Assad articulates the relationship between pigs and feces: Assad:  For example, like pigs are seen in Islam as . . . so if you look like . . . I’m trying to say . . . like for example, pigs and stuff, like they also like . . . the reason why they don’t . . . I think the reason is because pigs are like . . . they play around in mud and stuff. Halima:  Lay there in fecal matter. Assad:  And they also eat their . . .

174   Gill Haddow Halima:  Fecal. assad:  Yes, and their own poo, so they’re generally seen . . . I was thinking of a way not to say that, by the way, if you didn’t get it. So yeah.

Religious instruction forbidding the consumption of pork thus appears more important than lifestyle choices when asking people to make hypothetical decisions about accepting an animal organ. This is borne out in the comments in the open sections of the questionnaire with some participants self-identifying as Muslim, suggesting that using pigs for transplantation is not halal. In the commentary section of the survey where respondents were offered space to further elaborate on their answers to the survey, the association of the pig to dirt was often made regardless of religious affiliation, however. The risks the respondents associated with using nonhuman animal organs were not only about practical, ethical, or religious issues but had to do with consequences for ­personal identity. “Making them feel different” was offered by survey and focus group participants as a reason for their rejection of xenotransplantation. In the open comments section of the questionnaire, many comments were recorded, such as “It just feels strange” and “It doesn’t sound right,” “It would especially make me feel mentally uncomfortable,” “It would creep me out,” “It’s not nice to think about,” “I don’t want a pig/animal inside me.” A recurrent theme was that having a pig organ would make someone “part-pig.” Comments included: “I would hate to have an organ from an animal,” “I wouldn’t feel right having a pig’s organ,” “I don’t wanna be part pig, cause I would be pig,” “I don’t want a pig inside me,” and “I would feel awkward about having a pig organ.” Not everyone thought that having pig’s organ would affect their identity; thus, Diana suggests: “I don’t think it affects me as a person. I think it . . . if I needed, it’s urgent, I might die without it, I think I would take it and it will not affect me as a person, I’m really sure of it.” These results suggest that, in the xenotransplantation context, pig organs invoke a “yuck” factor. This is in line with previous studies, which have found that proposals to mix animal and human materials produce public reactions of disgust or “yuck” (Brown 1999) and are possibly related to a “wisdom of repugnance” (Kass 2002). In the context of this study, “yuck” responses expressed concerns about pollution behavior, mixing up human and animal bodies, and blurring the boundaries between species. Whether or not pigs (or any other nonhuman animal) are considered unclean, their use in transplants challenges known schemata of what it is to be a “pig” and what it is to be “human.” According to Mary Douglas, “Pollution behaviour is the reaction which condemns any object or idea likely to confuse or contradict cherished classifications” (Douglas 1966, 36). By raising questions about how animals, and pigs in particular, can transgress the boundaries between animals and humans, xenotransplantation prompts pollution behavior expressed as a “yuck” response (Alter 2007; Chakrabarty 2003; Robert and Baylis  2003). In this respect, views about xenotransplantation are closer to social ­reactions regarding chimeras and hybrid animals than to vegetarianism. Despite ­widespread practices of animal breeding, the creation of chimeras and hybrids is

Animal, Mechanical, and Me   175 c­ ommonly seen as “an affront to the hierarchical superiority and separateness of the human species” (Knoppers and Joly  2007, 284). By the same token, placing animal organs inside a human body would create a hybrid entity that transgresses familiar and taken-for-granted boundaries between species (Alter 2007; Chakrabarty 2003; Robert and Baylis  2003). The use of pig organs, in particular, would further compound the problem, since the pig, Douglas suggests, is the “odium of multiple pollution” (Douglas 1972, 79). Respondents’ views on xenotransplantation thus demonstrate concerns both about policing species boundaries and—significantly—about protecting the individual’s subjective identity.

What about Machines? Study participants did not view mechanical devices as positively as human organs, nor as negatively as animal organs. Participants expressed fears that harm to the body and changes in subjectivity would result from the use of implantable devices. The reasons they gave for not wanting to use machine parts to repair the human body included that “you’d feel like a robot or a freak,” “makes me less human,” “because I don’t want a machine inside my body,” “I don’t want to be cyborg,” and “I don’t want metal inside me.” Those who selected a mechanical device as their most favored option suggested that, due to thorough testing and technological advances, technology was “smart”: “Because technology now is really smart so I would feel safe having something smart doing the work,” “I want to be like Iron Man or the Terminator eh,” “It would be cool being part robot,” “It would be cool to be Robocop.” However, others expressed concerns about the reliability of implantable devices. A few focus group participants expressed a pragmatic view that whatever kind of replacement or repair was used, its ability to function correctly overrode any clear ­preferences about where it came from or what it was made of. Carlos, in particular, was notably consistent in expressing such a view: when I asked him about his preferences between the five options, he suggested that he did not have any strong feelings. “Not really, as long as it works, I keep saying this, I know” (Carlos, Gamers Focus group, emphasis added). It is notable, in this regard, that participants’ concerns about possible malfunction—unlike issues of organic compatibility—only related to machines, raising distinctive questions of technological vulnerability: not only would implants break, but also could they be broken or hacked into by malevolent others. Although the issue of biohacking did not come up in the survey, it was mentioned frequently in the gamer focus group: Scott:  Well, I think my point was the same technology that could be used to control the misfiring of epilepsy could be used in other ways that aren’t quite as seemly . . . Dominiqua:  Also to murder people potentially just find the right frequency and you fry your brain or stop your heart.

176   Gill Haddow Assad and Diana  in the University Islamic group exchanged views around the difference between a human-made and a living thing, with Diana stating that she would prefer the human option: Assad:  And also the system, it’s a man-made thing, as in it’s not exactly . . . I say manmade . . . I mean, I think I would rather use that, yeah. Gill:  Can I push you a little bit more on the distinction between it being artificial, say, man-made, we’ll go with man-made, that’s fine, it’s okay, and animal, is there something . . . Assad:  Well, I mean, there is obviously a difference because it is not a living creature. I don’t want to go all hippy and try and like . . . Gill:  No, no . . . Assad:  But obviously it is different, it’s a completely different thing because it’s not a living thing, it’s not something that God has created, it’s just something . . . it’s not a man creation, but it’s not real, it’s not that valuable. Diana:  Quite the opposite, actually, I wouldn’t take it (machine). I would put it last (in terms of preference), simply because I think the human connection is very important. Taking an organ from a human donor to me, is the best option. I know it sounds macabre, but because I myself, I have . . . expressed earlier, when I die I would like to strip myself bare in the sense that you take everything I have for use of someone who really needs it, and I think on that note I would prefer to take from human being who is obviously deceased, but it’s not that I undermined the competency or the value of machines, but it’s just that taking something human is essentially human of me. It’s more sentimental, there’s nothing . . . I have no scientific or religious opinion on this, it’s just sentimental.

Both Assad and Diana started from the same premise: that there is something peculiarly valuable about human organs. But they reached different conclusions. Assad and Diana agreed about what is natural, and they agreed that natural (and especially human) things are more valuable than artificial things. Their disagreement was solely over whether they would choose the unnatural, less valuable implant (Assad) or the natural, more valuable one (Diana). The Nuffield Council on Bioethics (1996), mentioned in the introduction, conducted a recent analysis of the role that the concept of “natural” plays in public debate. It concluded it is a term to be avoided in a public context, because of the variability in its use over time. Embedded within the exchange between Diana and Assad, was a firm idea, not just of what is natural, but of how choices about what is thought to be natural, are being created by the way that technology is challenging what is considered as such. As Science and Technology Studies (STS) scholars have noted: The contemporary need for naturalness can be better understood as a response to the fact that technology makes reality more and more makeable and, consequently, more contingent. Advancing technology changes everything that is, into our object of choice . . . [I]f human nature itself becomes makeable, it can no longer naively be laid down as the norm.  (Swierstra et al. 2009, 274)

Animal, Mechanical, and Me   177

Conclusion The argument presented in this chapter is based upon research that was deliberately mixed method in attempting to gauge both the depth and breadth of views, as well as generating new findings about, for example, 3D bioprinting. The research suffers from a number of methodological and conceptual issues. The focus groups were difficult to recruit. Informal feedback suggested that this was partly due to people feeling they did not know enough. Indeed, in the focus group, I felt I spent too much time explaining the benefits and risks of the technologies, which restricted further opportunities for contribution from the participants. Lack of information during the survey contributed to a high number (over 25 percent) of “don’t know” responses. The methodological context is hampered by using hypothetical questions (“what if this happened?”). Posing questions about future technologies that are both conjectural (preferences for using human or animal technologies that do not exist) and rhetorical (even if they did exist, patient choices would be clinically informed and not based solely on individual choice) are demanding for participants to answer. It is reassuring, therefore, that the results from both focus groups and survey are clear overall, and are in line with previous studies. The data contribute in important ways to questions about how much and what kind of body modification would be required before a person’s subjective identity is thought to be altered. This recalls a philosophical problem called “The Ship of Theseus”: how much of a ship needs to be changed before it is no longer the same ship? In the case of organ transplantation and body modification the question is: “how much of the human body can be changed before a person becomes someone else.” In this chapter, I have focused not on how much body modification is thought needed to alter subjectivity, but what kind of modification. The protection of human boundaries from contamination by animals, in particular the pig, was a strong theme emerging from the data. Xenotransplantation challenges human identity producing “yuck”-type responses in relation to the individual’s subjectivity, to animal and human ontologies, and to a perceived threat to human beings at the species level. Using implantable medical devices to replace whole organs provokes fears of mechanical malfunction and a change in subjectivity that is imagined to be both “robotic” and unnatural. Preference for human donors can be seen as part of protecting the boundaries of the individual, as well as the species, from machines that are perceived to diminish humanity, and from animals that are imagined to contaminate identity. This research did not seek to ascertain the “truth” of the subjective consequences of modifying the body by animal, mechanical, or human means. Moreover, some comments indicate a lack of understanding of how transplantation works and thus participants might not be well positioned to assess the relative merits of different methods (e.g., in relation to comments about the importance of knowing the background of a ­living donor). Rather, it builds a narrative of what the likely effects of different sources of

178   Gill Haddow substitute organ are imagined to be. Techno-scientific advances in biomedicine such as xenotransplantation, organ transplantation, and the increasing turn to mechanical that is “implantable medical devices” can pose challenges to experiential accounts of embodiment. According to those philosophies of embodiment that presume some form of Cartesian dualism—a perspective that informs much current reflection on biomedical innovation—subjectivity is typically considered to be quite separate from the body. On this view, body modification has little or no effect on subjectivity. From more phenomenological perspectives, however—the body is the experiential basis of being in the world, and the person is inseparable from one’s body. Embodiment then can simultaneously be experienced as both having and being a body. Embodiment is thus not a static state, but an ambiguous one: a dynamic and fluid process that becomes more or less important to everyday living depending on the circumstances that bring it to the fore (Cregan 2006; Crossley 1995; Haddow 2005; Howson and Inglis 2001; Turner 2008). Given potential organ recipients’ expressed beliefs, about the ambiguity of embodiment in reaction to xenotransplantation, 3D printed organs, and implantable medical devices, such findings may be of interest to researchers determining which avenues of research to pursue.

Notes 1. Genetic modifications such as CRISPR-Cas9 show some success (Lundin and Widner 2000; Lundin 1999, 2002). Indeed, a breakthrough occurred in 2016, when it was reported that a genetically modified pig’s heart, placed inside a baboon’s abdomen, had survived for over 900 days (Mohiuddin et al. 2016). Chimeric 2C10R4 anti-CD40 antibody therapy is ­critical for long-term survival of GTKO.hCD46.hTBM pig-to-primate cardiac xenograft. The success of gene modification could be significant as it demonstrates how gene editing and immunosuppressant therapy could potentially the ability of bodies to be able to reject those organs not recognized as the person’s own. However, this success is not yet an example of a functioning heart in a human body. 2. In the focus groups, permission was sought to record and reassurances about confidentiality given (a mixture of first names and pseudonyms are widely used in the following accounts). Focus groups were transcribed verbatim and the text imported into a ­computer-aided qualitative data analysis package (Nvivo 11). A constant comparative method for generating codes from the data and themes from the interrelations between codes was used; this approach is loosely informed by grounded theory (Charmaz 2006). However, a more abductive approach to thematic generation was taken overall, that is, with a knowledge of previous research and a sensitivity that new and unanticipated data would emerge (Blaike 2007). 3. I am very grateful to Dr. Tirion Seymour for the organization, recruitment, and conduct of the focus groups. 4. The overall sample of young people comprised around three hundred state secondary schools throughout Scotland, UK. The sampling frame was stratified by local authority, school size, and urban-rural classification and a random start point ensured a representative sample of secondary schools was produced. Each school agreeing to participate in the

Animal, Mechanical, and Me   179 research was randomly allocated 2-year groups from S1 to S6. The survey was administered by class teachers, using self-completion online questionnaires in a mixed-ability class such as Personal, Health, and Social Education. The questions were generated in close collaboration with Ipsos MORI, a large UK market research company commissioned to carry out the study (https://www.ipsos.com/ipsos-mori/en-uk).

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180   Gill Haddow Howson, A. and D.  Inglis. 2001. “The Body in Sociology: Tensions Inside and Outside Sociological Thought.” Sociological Review 49: 297–317. Idvall, M. 2006. “The Xenotransplantation Narratives of Nine Type 1 Diabetic Patients with Renal Failure.” Xenotransplantation 13: 509–511. Kass, L. 2002. Life, Liberty and the Defense of Dignity: The Challenge for Bioethics. San Francisco: Encounter Books. Knoppers, B.  M., and Y.  Joly. 2007. “Our Social Genome?” Trends in Biotechnology 25: 284–288. Kranenburg, L. W., C. Kerssens, J. N. Ijzermans, W. Zuidema, W. Weimar, and J. J. Busschbach. 2005. “Reluctant Acceptance of Xenotransplantation in Kidney Patients on the Waiting List for Transplantation.” Social Science Medicine 61: 1828–1834. Lundin, S. 1999. “The Boundless Body: Cultural Perspectives on Xenotransplantation.” Ethnos 64: 5–31. Lundin, S. 2002. “Creating Identity with Biotechnology: The Xenotransplanted Body as the Norm.” Public Understanding of Science 11: 333–345. Lundin, S. and H. Widner. 2000. “Attitudes to Xenotransplantation: Interviews with Patients Suffering from Parkinson’s Disease Focusing on the Conception of Risk.” Transplantation Proceedings 32: 1175–1176. Mirononov, V., V. Kasyanov, and R. R. Markwald. 2011. “Organ Printing: From Bioprinter to Organ Biofabrication Line.” Current Opinion in Biotechnology 22: 667–673. Mohiuddin, M.  M., A.  K.  Singh, P.  C.  Corcoran, M.  L.  Thomas III, T.  Clark, B.  G.  Lewis, R.  F.  Hoyt, M.  Eckhaus, R.  N.  Pierson III, A.  J.  Belli, E.  Wolf, N.  Klymiuk, C.  Phelps, K.  A.  Reimann, D.  Ayares, and K.  A.  Horvath. 2016. “Chimeric 2C10R4 Anti-CD40 Antibody Therapy Is Critical for Long-Term Survival of GTKO.hCD46.hTBM Pig-toPrimate Cardiac Xenograft.” Nature Communications 7: 11138. Nuffield Council on Bioethics. 1996. Animal-to-Human Transplants: The Ethics of Xenotransplantation. London: Nuffield Council on Bioethics. Pearsall, P., G. R. Schwartz, and L. S. Russek. 2002. “Changes in Heart Transplant Recipients That Parallel the Personalities of Their Donors.” Journal of Near-Death Studies 20: 191–206. Robert, J. S., and F. Baylis. 2003. “Crossing Species Boundaries.” American Journal of Bioethics 3: 1–13. Sanner, M. 2001. “People’s Feelings and Ideas about Receiving Transplants of Different Origins Questions of Life and Death, Identity, and Nature’s Border.” Clinical Transplantation 15: 19–27. Sanner, M.  A. 1998. “Giving and Taking—To Whom and from Whom? People’s Attitudes Toward Transplantation of Organs and Tissue from Different Sources.” Clinical Transplantation 12: 530–537. Sanner, M.  A. 2006. “People’s Attitudes and Reactions to Organ Donation.” Mortality 11: 133–150. Sharp, L. 1995. “Organ Transplantation as a Transformative Experience: Anthropological Insights into the Restructuring of the Self.” Medical Anthropology Quarterly 9: 372. Sharp, L. 2006. Strange Harvest: Organ Transplants, Denatured Bodies, and the Transformed Self. Berkeley: University of California Press. Simmons, R., and M.  Klein, eds. 1987. Gift of Life: The Effect of Organ Transplantation on Individual, Family and Societal Dynamics. Oxford: Transaction Books. Standing, H. C., T. Rapley, G. A. Macgowan, and C. Exley. 2017. “ ‘Being’ a Ventricular Assist Device Recipient: A Liminal Existence.” Social Science and Medicine 190: 141–148.

Animal, Mechanical, and Me   181 Swierstra, T., R.  Van Est, and M.  Boenik. 2009. “Taking Care of the Symbolic Order. How  Converging Technologies Challenge our Concepts.” Nanoethics. doi:10.1007 /s11569-009-0080-0. Sylvia, C., and W. Novack. 1997. A Change of Heart: The Extraordinary Story of a Man’s Heart in a Woman’s Body. Boston: Little Brown & Co. Teran-Escandon, D., L. Teran-Ortiz, C. Ormsby-Jenkins, M. L. Evia-Viscarra, D. J. G. White, and R. Valdes-Gonzalez-Salas. 2005. “Psychosocial Aspects of Xenotransplantation: Survey in Adolescent Recipients of Porcine Islet Cells.” Transplantation Proceedings 37: 521–524. Turner, B. S. 2008. The Body and Society: Exploration in Social Theory. London: Sage. Vermeulen, N., G. Haddow, T. Seymour, A. Faulkner-Jones, and W. Shu. 2017. “3D Bioprint Me: A Socioethical View of Bioprinting Human Organs and Tissues.” Journal of Medical Ethics 43, no. 9: 618–624. Welin, S., and M.  S.  Sandrin. 2006. “Some Ethical Problems in Xenotransplantation: Introductory Remarks at Ethics Workshop.” Xenotransplantation 13: 500–501.

chapter 11

Agi ng, Gen der, a n d the Body Laura Hurd

Population aging is dramatically changing the demographic make-up of societies around the world (World Health Organization 2015). As an unprecedented number of individuals are living longer than ever before, ageism has become a ubiquitous social problem that delimits the lives of older adults, particularly in Western countries (Calasanti 2016; Nelson 2002). In this chapter, the author explores how ageism influences the research encounters and examines the methodological complexities of studying older bodies.

Ageism, Gender, and Body Image in Later Life Defined as “the systematic stereotyping of and discrimination against older adults because they are old” (Butler 1975, 12), ageism arises from and is legitimated by the use of age as an organizing principle of society. The resultant age relations privilege young and middle-aged adults and disadvantage the old, who face increasing social exclusion and cultural invisibility (Calasanti and Slevin 2001). Ageism is manifested in the discrimination that older adults face in the workplace (Harris et al. 2018; Stypinska and Turek 2017), the health care system (Ben-Harush et al. 2017; Chrisler, Barney, and Palatino 2016), and  their everyday interactions with others (Hurd Clarke and Korotchenko  2016; Vincent 2015), as well as in the way that are underrepresented and negatively portrayed in the media (Hurd Clarke 2017/2018). The body is central to older adults’ marginalization as cultural narratives of later life decline are expressed in and reinforced by ageist stereotypes that equate old bodies with obsolescence, loss of productivity, poor health, senility, dependence, asexuality, and diminishing romantic appeal (Gullette 1997; Hurd

184   Laura Hurd Clarke and Korotchenko 2011; Laws 1995). In contrast, bodies in young adulthood are assumed to be the epitome of physical attractiveness, health, sexual desirability, happiness, innovation, and social engagement (Calasanti and Slevin 2001). Age-based discrimination is not just a social problem. Rather, ageism infiltrates and often confounds the research encounter. To begin, researchers may shy away from topics they erroneously presume are of no interest or relevance to older adults as a result of their own internalization of ageist stereotypes. Certainly, in my doctoral research concerning older women’s body image, I was initially guilty of this myself, as I failed to ask my participants about their experiences of sexuality until one of the women in my study confronted me about my avoidance of the topic (Hurd Clarke 2003, 2012). Her challenge to me to ask older women about their perceptions and experiences of sex was an important turning point in my research career, leading me to consider not only societal ageism but also my own internalization of age-based discrimination. Other scholars have similarly noted that researchers often inaccurately assume that older adults are not sexually active or that they are uncomfortable and unwilling to discuss their sexual experiences (Gott and Hinchliff  2003; Hurd Clarke  2003,  2012; Thorpe et al.  2017). As well as ­reinforcing cultural norms that position sexuality as the sole purview of young and ­middle-aged adults, these assumptions are grounded in heterosexism and the equating of sexuality with partnered, heterosexual intercourse (Fileborn et al.  2015b; Thorpe et al. 2017; Thorpe, Fileborn, and Hurd Clarke 2017). Therefore, the experiences of single or lesbian, gay, bisexual, and transgendered older adults are largely absent from the existing research (Fileborn et al. 2015a; King et al. 2018; Peel and Harding 2016). Narrow definitions of what constitutes sex, combined with researcher discomfort with the topic, lead to a failure to consider how older adults perceive or experience masturbation and oral sex (Hurd Clarke 2006; Thorpe et al. 2017). While later life sexuality remains a largely unexplored topic of theorizing and research, considerable literature has examined one of the most salient ways that ageism is established and maintained in Western society, namely cultural norms and ideals related to femininity and masculinity. Gendered body ideals emphasize the importance of being youthful, albeit by emphasizing different aspects of physicality in men and women. Men are prized for their physical and social accomplishments in their bodies as idealized masculinity is equated with youthful athleticism, strength, hypersexuality, leadership, political influence, and workplace productivity (Grogan  2017; Thompson and Langendoerfer  2016). In contrast, women’s social value is assumed to primarily derive from their appearance, specifically their approximation to the feminine beauty ideal of a young adult who is healthy, toned, slim, yet voluptuous (Bordo  2003; Grogan 2017). Sontag (1997) has argued that differing body ideals for men and women reflect and reinforce a gendered double standard. Men who look older are often considered to be distinguished rather than unattractive (Sontag  1997), and those who are wealthy and influential may continue to be seen as socially desirable in their later years through their accumulation and retention of economic and political power (McGann et al. 2016; Thompson 2006). Rather than inevitably undermining their cultural currency, aging, so long as it is not accompanied by poor health and disability, may augment a

Aging, Gender, and the Body   185 man’s status as an experienced, influential, and socially esteemed leader (Hurd Clarke, Bennett, and Liu 2014). Women, on the other hand, are perceived to become older at a younger age than their male counterparts and aging is especially detrimental to their social status. The onset of physical signs of aging such as age spots, wrinkles, sagging skin, increased weight, and gray hair progressively diminishes women’s erotic capital (Hakim 2011; Hurd Clarke 2011). The perceived loss of feminine beauty that is associated with aging has everyday consequences for older women who are less likely to secure and retain employment or promotions (Bowman et al.  2017; Duncan and Loretto  2004; Jyrkinen and McKie  2012; Walker et al.  2007) or to win and retain the affections of romantic partners (Fales et al.  2016; Hurd Clarke and Griffin  2008) as compared to younger women. As well as resulting in social inequities in everyday life, gendered interpretations of the signs of aging shape men’s and women’s body image, which is defined as the ways that individuals perceive, feel about, and manage their aging bodies (Cash and Smolak 2011). Although studies that include or focus exclusively on older individuals continue to be relatively sparse, the existing body image literature reveals that many older adults view later life and their changing bodies with dissatisfaction, if not repugnance (Bytheway and Johnson 1990). That said, men’s and women’s body image dissatisfaction reflects cultural gender body ideals and norms. Related to the emphasis masculinity ideals put on the body as a tool for social action, older men identify the reduced muscularity, changes in health status, and declining physical and sexual abilities that often occur in later life as their primary sources of body image dissatisfaction (Kaminski and Hayslip 2006; Liechty et al. 2014; Meadows and Davidson 2006). Older men report that loss of strength, health, and functional abilities undermines their sense of masculine identity and cultural currency (Silver  2003; Spector-Mersel  2006; Thompson and Langendoerfer 2016). In contrast, and like their younger female counterparts, older women tend to express “normative discontent” (Rodin, Silberstein, and Striegel-Moore 1984, 267) with their appearances, specifically their weight (Allaz et al. 1998; Grogan 2017; Hurd Clarke 2002; Stevens and Tiggemann 1998). Studies have also found that older women are discontented with the signs of aging in their appearances, directing their displeasure primarily toward their wrinkles, sagging skin, and gray hair (Baker and Gringart  2009; Hurd Clarke  2011; Tiggemann  2004; Ward and Holland 2011). A number of studies have considered how body image is related to sexual orientation in later life. Although some research has found that lesbian women report body image dissatisfaction that is similar to their heterosexual counterparts (Bergeron and Senn 1998; Heffernan 1999; Huxley, Clarke, and Halliwell 2011; Slevin 2006), other studies suggest that appearance norms in lesbian communities may differ from those associated with idealized femininity (Clarke and Turner  2007; Krakauer and Rose  2002). Some lesbian women embrace masculine or butch appearances as a means of making their sexual orientation more visible (Huxley, Clarke, and Halliwell 2014; Lev 2008). Similarly, older lesbian women may adopt short hairstyles to resist gender norms or because they consider gray hair to be a means of disrupting ageist stereotypes (Ward and

186   Laura Hurd Holland 2011; Winterich 2007). In contrast, older gay men tend to report greater body dissatisfaction than their heterosexual counterparts (Lodge and Umberson 2013; Slevin and Linneman 2010; Suen 2016). Older gay men’s heightened body image dissatisfaction has been linked to their internalization of subcultural norms in the gay community that emphasize the importance of youthful and muscular appearances (Drummond 2006; Jones and Pugh 2005). Consequently, older gay men are more likely than their heterosexual counterparts to use physical activity, dieting, hair dye, cosmetic surgery, and strategic clothing choices to approximate youthful body ideals and hide their advancing years (Ryan, Morrison, and McDermott 2010; Slevin and Linneman 2010). Relatively few studies have considered the influence of race and ethnicity on body image in later life. Research with adolescent, young adult, and middle-aged African American women reveals that they collectively tend to have greater body satisfaction and acceptance of heavier body weights as well as a reduced drive for thinness (Franko and Striegel-Moore  2002; Fujioka et al.  2009; Granberg, Simons, and Simons  2009; Molloy and Herzberger 1998) as compared to Caucasian individuals. Dunkel, Davidson, and Qurashi (2010) found that older Muslim women living in the United States reported less concern for achieving the Western thin ideal than did their younger counterparts. Studies with older adults living in non-Western countries reveal similar results. A study exploring body image among Senegalese adults found that while men and women tended to be largely satisfied with their appearances, aging was associated with decreasing body satisfaction for women (Macia et al. 2017). Ando and Osada (2009) found that older women in Japan expressed body image dissatisfaction comparable to Western women, although the importance they gave to appearance declined with age. Although there has been limited research concerning the influence of culture, ethnicity, and race on later life body image, there has been some consideration of the impact of masculinity and femininity norms and ideals more broadly on the gendered interactions between study participants and interviewers (Arendell  1997; Pini  2005; Sallee and Harris 2011). It has been noted that men are often more comfortable and willing to reveal their vulnerabilities with female interviewers (Williams and Heikes 1993; Yong 2001), perhaps because of women’s traditional nurturing roles or as a result of men’s sense that they do not have to compete for authority as a result of women’s relative disadvantage in the gender hierarchy (Oliffe and Mróz 2005; Sallee and Harris 2011). Certainly, it has not been uncommon for older men to cry during my interviews with them as they have described the loss of loved ones or revealed deeply personal anxieties about their sexual dysfunction or incontinence. In line with the literature (Arendell  1997; Gailey and Prohaska 2011; Pini 2005), I have also encountered situations where older male inter­ viewees have enacted idealized masculinity by being openly flirtatious or overly emphasizing of their sexual prowess in response to interview questions. Finally, I have often found that older men have asserted their authoritative masculinity by offering unsolicited advice, expressing “fatherly interest” (Leontowitsch 2012, 116) in my career and interpersonal relationships, or highlighting their identities as business leaders by carrying briefcases, providing me with evidence that attests to their professional success, or preferring to be interviewed in their places of employment rather than their private homes.

Aging, Gender, and the Body   187 My research interviews with older women have similarly been influenced by femininity norms and ideals both in terms of the ways female participants have interacted with me but also in terms of their responses to my questions. On the one hand, I have found that older women have often engaged with me as a confidant or expert authority, seeking advice or information about everything from personal relationships to vaginal dryness (Hurd Clarke 2003). Some have also positioned me as a granddaughter or daughter, particularly when I was younger, and have offered encouragement to me as a mother or conveyed pride in and esteem for my professional accomplishments. More notably, however, have been the ways that older women have struggled to answer some of my questions about body image. My queries about what they like about the way they look have often been met with astonishment, awkward silence, or suggestions that my questions are either humorous or absurd. While they have sometimes referred to personal qualities that they equated with inner beauty or indicated that they liked aspects of their bodies insofar as they had remained largely unchanged by the passage of time, older women have rarely conveyed pleasure with how their appearances have been altered by age. In other words, the social construction of physical attractiveness as increasingly unattainable with age renders older women unable to consider wrinkles, age spots, sagging skin, or other markers of oldness as acceptable bodily changes, let alone desirable exemplars of beauty.

Embodiment, Ageism, and Healthism in Later Life Another way that researchers have considered how older adults make sense of their aging bodies is through the exploration of embodiment, which is defined as our experiences in our bodies as we move through the social and physical world (Hurd Clarke and Korotchenko 2011). The bulk of the later life embodiment research has focused on how bodily changes resulting from illness and disability impact older adults’ everyday lives and sense of self. This literature has highlighted how the onset of health issues in later life often brings the previously taken-for-granted body into a person’s awareness in unexpected and unpleasant ways (Williams 1996). In particular, the pain, functional losses, appearance changes, and/or alterations in life expectancy associated with various chronic illnesses such as arthritis (Gibbs 2008; Sanders, Donovan, and Dieppe 2002), cancer (Aoun, Deas, and Skett  2016; Hannum and Rubinstein  2016), osteoporosis (Barker, Toye, and Lowe 2016), Parkinson’s disease (Gibson and Kierans 2017; StanleyHermanns and Engebretson 2010), and stroke (Becker 1993; Kitson et al. 2013) may culminate in a “biographical disruption” (Bury 1982, 167). Bury (1982, 169) contends that “chronic illness involves a recognition of the worlds of pain and suffering, possibly even of death, which are normally only seen as distant possibilities or the plight of others.” In other words, the physical realities and social consequences of being ill threaten, if not

188   Laura Hurd displace, previously held assumptions about one’s body, self-concept, future plans and possibilities, and relationships with others (Bury 1982). However, the concept of biographical disruption is not without controversy and has been the source of ongoing debate. Some scholars have challenged the assumption that illness is universally and inevitably disruptive in later life as they have emphasized older adults’ resilience and accumulated coping resources and strategies. For example, Faircloth et al. (2004, 242) have argued that while chronic illness may initially be physically disruptive, many older adults find ways to incorporate the physical and social impacts of their health losses into their personal narratives, thereby maintaining “biographical flow.” Many studies have found that although they may experience the physical symptoms and social consequences of illness to be challenging if not dismaying, older adults often perceive later life health losses to be natural and inevitable aspects of their personal biographies and of growing older more generally (Gignac et al. 2006; Hubbard, Kidd, and Kearney  2010; Hurd Clarke, Griffin, and the PACC Research Team 2008; Husser and Roberto 2009; Llewellyn et al. 2014; Sanders, Donovan, and Dieppe 2002). In this way, older adults and scholars alike reject the tragedy narratives often associated with aging and having an older body. Whether or not aging and illness lead to biographical disruption or they are experienced in terms of biographical flow, there is much evidence to suggest that growing older challenges the relationship between the body and the self. Given the devaluation of oldness and the linking of health and gender ideals to youthfulness, it is perhaps unsurprising that older adults often distance themselves from aging and oldness as they suggest that their bodies’ appearances and physical abilities are increasingly unreflective of their identities (Hurd 1999; Minichiello, Browne, and Kendig 2000; Slevin 2006). Older women and men often point to their activities, vitality, and/or sense of purpose as evidence that they are different from those considered old by virtue of their poor health, social disengagement, or physical and social dependence on others (Hurd 1999; Minichiello, Browne, and Kendig 2000). Older individuals may also differentiate between their chronological and felt ages as they contend that they embody a youthful spirit and feel “young-at-heart” despite the passage of time (Choi, DiNitto, and Kim 2014; Furstenberg 1989; Weiss and Lang 2012). The increasing bifurcation of identity from the body over time is reinforced by cultural assumptions that being old is bad while remaining young, at least in attitude if not in appearance, health, and physical ability, is the ultimate goal. In Western culture, this sentiment is expressed in a myriad of taken-for-granted ways such as the ageist depictions of older people in the media and birthday cards or the assumption that it is a compliment to tell someone of advanced age that they look and act younger than their chronological years (Gendron, Inker, and Welleford  2018; Hurd Clarke 2017/2018). Another social norm that increasingly challenges the relationship between the body and the self in later life is healthism, or the cultural assumption that health is both a personal responsibility and the product of individual effort (Crawford  1980,  2006). Healthism leads to the social construction of poor health as the result of moral laxity on

Aging, Gender, and the Body   189 the part of individuals who are assumed to have inadequately disciplined their bodies through proper diet, exercise, and the use of other health-promoting practices and products. Healthism positions health as an active status that individuals achieve rather than a passive status that results from a combination of genetics, luck, and/or one’s social position and access to resources. The social construction of health as a personal duty and accomplishment is amplified and entrenched by theorizing, research, and health practices grounded in the concept of successful aging (Rowe and Kahn 1997), a paradigm that dominates social gerontology and has led to the medicalization of aging (Katz and Calasanti 2015). Defined as low probability of disease and disability, high functioning, and active social engagement, successful aging is believed to be attainable “through individual choice and effort” (Rowe and Kahn  1998, 37) primarily related to lifestyle. Diverting attention away from the impact of health and social inequities accrued over the life course (Crawford 1980, 2006; Dworkin and Wachs 2009), ageism, healthism, and successful aging narratives collectively situate youthfulness and health as normal, while oldness and illness are constructed as forms of social deviance to be avoided at all costs. In the context of research about later life embodiment, internalized ageism and healthism may augment the actual and perceived distance between study participants and researchers. Briggs (2003, 914) notes that the research encounter may “create and sustain power relations of modern society” and thereby mirror, if not heighten, the cultural vulnerability of study participants. For example, researchers may ask questions or behave in ways that reflect and reinforce the deeply engrained cultural assumptions that younger, healthy individuals are more socially valued than older, frail individuals (Calasanti and Slevin 2001). As a result, the rapport between interviewers and study participants may be undermined as the latter may feel compelled to respond to questions in ways that position themselves in the best possible light, thus managing potential stigma (Cook and Nunkoosing 2008). Thus, research participants may be reluctant to reveal that they dislike or avoid physical activity and other forms of health promotion for fear of being seen as morally suspect relative to their presumed social responsibility to individually manage and discipline their aging bodies. This issue is something I continually struggle against as a result of my academic location in a School of Kinesiology, an interdisciplinary department concerned with researching and promoting exercise and sport. Study participants invariably assume that I hold strong opinions about the importance of physical activity for health and thus often convey hesitance, at least initially, in disclosing negative or ambivalent attitudes about exercise and other forms of health promotion. In addition to physical activity, social norms dictate that older adults should engage in a variety of gendered body management practices. Accordingly, older men may endeavor to shore up their masculine identities and respond to or prevent the health and sexual changes that come with age by turning to exercise or the use of pharmaceuticals such as Viagra and Cialis (Calasanti et al. 2013; Marshall 2010). Older women may turn to dieting, exercise, make-up, fashion, hair dye, and/or nonsurgical and surgical ­cosmetic procedures to mask their chronological ages and more closely approximate the

190   Laura Hurd youthful, feminine, beauty ideal (Brooks  2010; Hurd Clarke and Griffin  2008; Hurd Clarke, Griffin, and Maliha  2009; Muise and Desmarais  2010; Slevin  2010; Smirnova 2012; Ward and Holland 2011). In this way, older adults not only seek to sculpt and maintain idealized bodies but also to demonstrate the “will to health” (Higgs et al. 2009, 687). Higgs et al. (2009) argue that the pursuit of health through consumption has become as important as having good health itself in today’s youth- and healthfocused society. In later life, body management practices both reflect and enable the expression of one’s membership in the third age, a stage of life equated with “an ageing youth culture” (Higgs and McGowan 2013, 22) characterized by health, choice, autonomy, leisure, self-expression, pleasure, and social engagement (Gilleard and Higgs  2013). The third age is juxtaposed against the social imaginary of the dreaded fourth age, which is associated with capitulation to ageist stereotypes of decline and decay (Higgs and Gilleard 2015, 116). In this context, body management practices not only enable older adults to retain their femininity and masculinity, they also are central to the demonstration of their agency, morality, and social citizenship. That said, the ability to use consumption to signify and maintain optimal health and aging is clearly delimited by social class and individuals’ access to financial and social resources (Calasanti et al. 2013; Calasanti and Slevin 2001). In other words, successful aging through body management practices is a privilege more readily available to the middle and upper classes. Internalized assumptions about appropriate, if not requisite, gendered body management practices frequently influence interview dynamics. On the one hand, I have often found it difficult for participants to illuminate their reasons for engaging in their chosen body management practices. While they may easily identify that they shave, dress in particular ways, or use make-up and hair dye, study participants regularly struggle to articulate why they do those things beyond saying that the process as well as the product makes them feel presentable and more masculine or feminine. Twigg (2000) explains this research conundrum by noting that our perceptions of and motives for the things that we do to and with our bodies “exist at a level that is rarely brought into conscious articulation or review” (4). The challenge of researchers is to find ways to open up conversation about and reflections on the mundane aspects of corporeality in productive and nonleading ways. Similarly, the appearances and body practices of researchers may inadvertently enhance or threaten rapport. For example, it has not been uncommon for female participants to remark on my body weight and clothing choices, make comparisons of what they perceive to be my body management choices with their own, or question me as to my views on everything from cosmetic surgery to the use of hair dye. I have also had a cosmetic surgeon slip into conversation his assessment of my apparently numerous bodily imperfections that would benefit from his skillful attention. Finding a balance between being authentic and presenting as a safe, perhaps even neutral, person with whom participants may freely confide can be a tricky endeavor at times, especially in those moments when participants are openly critical of one’s appearance and body management choices. At the same time, those interactions are perhaps among the most illuminating of participants’ as well as our own perceptions, values, and taken-forgranted assumptions about bodies, gender, and age.

Aging, Gender, and the Body   191

Moving Forward: Strategies and Avenues for Future Research The literature points to a number of fruitful avenues by which researchers may turn the challenges of internalized biases and social distance into opportunities to enhance the exchanges between interviewers and participants. Much attention has been given to the importance and role of reflexivity or “critical self-reflection of the ways in which researchers’ social background, assumptions, positioning and behavior impact on the research process” (Finlay and Gough 2003, ix). Indeed, there is a wealth of literature that explores the topic of reflexivity (see, for example, Berger 2015; Kelly et al. 2017; Underwood, Satterthwait, and Bartlett 2010) and suggests that critical self-reflection may not only minimize the impact of internalized biases on the research encounter but is also “a crucial strategy in the process of generating knowledge” (Berger 2015, 219). Similarly, social distance between the interviewer and study participants may serve to enhance rapport as researchers are positioned and experienced as acceptable outsiders (Hurd Clarke 2003; Thorpe et al. 2017). For example, younger women interviewing older adults may be perceived as individuals lacking expertise on aging who have the potential to be taught by their more knowledgeable elders (Hurd Clarke 2003; Thorpe et al. 2017). In this way, age and gender differences may facilitate sharing and participant comfort during their interactions with researchers. In the future, the research on later life body image and embodiment would benefit from greater attention to the diversity of older adults’ experiences. In particular, research is needed that more fully considers the perspectives of older lesbian, gay, bisexual, transgender, and queer adults, the experiences of members of racial and ethnic minorities, and the voices and perceptions of individuals from non-Western countries. Such research would enhance our understanding of the ways that culture, ethnicity, and race combine to influence older adults’ internalization and resistance of age and gender norms and how those norms simultaneously vary and remain the same over time and location in a globalized world. Finally, rethinking the way we report on our methods in academic journals would be helpful. Beyond writing about study design, recruitment, and analytic processes, greater attention to researcher reflexivity as well as the often messy backstage (Goffman  1959) interactions that occur and choices that are made would foster greater awareness of the social construction of knowledge as well as the role of bodies and embodiment in the research encounter.

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Aging, Gender, and the Body   195 Hurd Clarke, Laura. 2011. Facing Age: Women Growing Older in Anti-Aging Culture. Lanham, MD: Rowman and Littlefield. Hurd Clarke, Laura. 2012. “Researching the Body and Embodiment in Later Life.” In Researching Later Life and Ageing, edited by Miranda Leontowitsch, 24–40. New York: Palgrave Macmillan. Hurd Clarke, Laura. 2017/2018. “Women, Aging, and Beauty Culture: Navigating the Social Perils of Looking Old.” Generations 41, no. 4: 104–108. Hurd Clarke, Laura, and Alexandra Korotchenko. 2011. “Aging and the Body: A Review.” Canadian Journal on Aging 30, no. 3: 495–510. Hurd Clarke, Laura, and Alexandra Korotchenko. 2016. “ ‘I Know It Exists . . . But I Haven’t Experienced It Personally’: Older Canadian Men’s Perceptions of Ageism as a Distant Social Problem.” Ageing & Society 36, no. 8: 1757–1773. Hurd Clarke, Laura, and Meredith Griffin. 2008. “Visible and Invisible Ageing: Beauty Work as a Response to Ageism.” Ageing and Society 28, no. 5: 653–674. Hurd Clarke, Laura, Erica V. Bennett, and Chris Liu. 2014. “Aging and Masculinity: Portrayals in Men’s Magazines.” Journal of Aging Studies 31: 26–33. Hurd Clarke, Laura, Meredith Griffin, and Katherine Maliha. 2009. “Bat Wings, Bunions, and Turkey Wattles: Body Transgressions and Older Women’s Strategic Clothing Choices.” Ageing and Society 29, no. 5: 709–726. Hurd Clarke, Laura, Meredith Griffin, and the PACC Research Team. 2008. “Failing Bodies: Body Image and Multiple Chronic Conditions in Later Life.” Qualitative Health Research 18, no. 8: 1084–1095. Husser, Erica K., and Karen A. Roberto. 2009. “Older Women with Cardiovascular Disease: Perceptions of Initial Experiences and Long-Term Influences on Daily Life.” Journal of Women & Aging 21, no. 1: 3–18. Huxley, Caroline  J., Victoria Clarke, and Emma Halliwell. 2011. “ ‘It’s a Comparison Thing, Isn’t It?’: Lesbian and Bisexual Women’s Accounts of How Partner Relationships Shape Their Feelings About Their Body and Appearance.” Psychology of Women Quarterly 35, no. 3: 415–427. Huxley, Caroline J., Victoria Clarke, and Emma Halliwell. 2014. “A Qualitative Exploration of Whether Lesbian and Bisexual Women Are ‘Protected’ from Sociocultural Pressure to Be Thin.” Journal of Health Psychology 19, no. 2: 273–284. Jones, Julie, and Steve Pugh. 2005. “Ageing Gay Men: Lessons from the Sociology of Embodiment.” Men and Masculinities 7, no. 3: 248–260. Jyrkinen, Marjut, and Linda McKie. 2012. “Gender, Age and Ageism: Experiences of Women Managers in Finland and Scotland.” Work, Employment and Society 26, no. 1: 61–77. Kaminski, Patricia L., and Bert Hayslip. 2006. “Gender Differences in Body Esteem among Older Adults.” Journal of Women & Aging 18, no. 3: 19–35. Katz, Stephen, and Toni Calasanti. 2015. “Critical Perspectives on Successful Aging: Does It ‘Appeal More Than It Illuminates?’ ” The Gerontologist 55, no. 1: 26–33. Kelly, Martina, Joy de Vries-Erich, Esther Helmich, Tim Dornan, and Nigel King. 2017. “Embodied Reflexivity in Qualitative Analysis: A Role for Selfies.” Forum: Qualitative Social Research 18, no. 2: 1–21. King, Andrew, Almack, Kathryn, Suen, Yiu-Tung, and Sue Westwood, eds. 2018. Older Lesbian, Gay, Bisexual and Trans People: Minding the Knowledge Gaps. New York: Routledge. Kitson, Alison L., Clare Dow, Joseph D. Calabrese, Louise Locock, and Asa M. Athlin. 2013. “Stroke Survivors’ Experiences of the Fundamentals of Care: A Qualitative Analysis.” International Journal of Nursing Studies 50, no. 3: 392–403.

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chapter 12

Beyon d Bi na ry Sex a n d Gen der Ideol ogy Cary Gabriel Costello

In the contemporary West, sex and gender are framed as binaries. The first thing we are told when a baby is born is if it is a boy or a girl, and a binary sex designation must be listed on the birth certificate. Our school textbooks teach us that humans are either males (with phalli, XY chromosomes, and a testosterone-dominant hormone profile) or females (with vulvas, XX chromosomes, and an estrogen-dominant hormone profile). Genitals are understood to determine binary gender, a social characteristic so fundamental that it structures everything from the built environment to language to what advertising algorithms show us in social media. Sex/gender binarism is so pervasive that it seems inevitable and universal. But this is ideology. In fact, each element of physical sex—genitals, gonads, chromosomes, and hormones—can vary independently, producing a broad spectrum of physical sex configurations (Dea  2016; Dreger  1998; Fausto-Sterling  2000; Kessler  1998; Reis 2012). Intersex statuses are found in all animal species, including humans. As this chapter will discuss, throughout world history, societies have sorted the sex spectrum into three, four, five, or more categories. And many societies have had culturallyrecognized pathways for people to move from one category to another. Most people in the contemporary West are unaware of this history and embodied reality because they have been systematically erased—first by European colonialists imposing binary sex/gender on colonized peoples in the name of “civilization” and eradicating sin, and then by the medicalization of sex variance as a disorder to be surgically eliminated and hidden. Presumptions that sex and gender are inherently binary have long infused Western lay understandings, religious prescriptions, and scientific theories. Within the social sciences, such theories are usually referred to as “essentialist” (Carastathis 2019). Essentialist theories hold that binary physical sex, “traditional” gender roles, and heterosexual orientation naturally align. Today, such theories are often asserted by evolutionary psychologists and sociobiologists who assert that binary, patriarchal gender relations are naturally compelled by an interaction between universal

200   Cary Gabriel Costello binary sex differences and a Darwinian imperative to reproduce (e.g., Buss  1995; Peterson 2018). Theories that oppose sex/gender essentialism, generally termed “social constructivist,” hold that sex/gender understandings are socially produced and performed, and thus are malleable and will vary between cultures (e.g., Butler  1990; Connell 2002; Fine 2011; West and Zimmerman 1987). A simplistic summary of the debate between sex/gender essentialist and constructivist theorists frames essentialists as socially conservative and constructivists as socially progressive. Indeed, most constructivists lean toward progressivism, and many essentialists hold reactionary sex/gender ideologies—for example, celebrity evolutionary psychologist Jordan Peterson refuses to recognize gender transitions as valid, frames nonbinary gender identity as mental illness, and describes feminism as in dangerous conflict with biological reality (Murphy 2016). But there are feminist gender essentialists (e.g., Fisher 1992), and today many trans-exclusionary radical feminists identify as feminist progressives while asserting a sex-essentialist ideology that rejects the possibility of gender transition and views gender identity itself as a delusion that endangers (cisgender) women (e.g., Goude 2016). So essentialists are a diverse group—but almost all hold in common a belief in an immutable, embodied binary sex division that determines binary gendered behavior. In disputing essentialist theory, key evidence relied upon by constructivists is that of documented historical variation in sex categories, gender roles, and sexual behavior. And a survey of world history reveals both great variation in sex/gender understanding—and the imposition of binary sex/gender by force—that we should review.

A Brief History of the Imposition of Binary Sex/Gender Ideology Before we engage in a brief overview of nonbinary sex/gender understandings in world history, it’s important that we delineate errors to avoid. Within the disciplines of anthropology and history, as Towle and Morgan (2002) note, nonbinary sex/gender understandings are often lumped together under the framework of a “third gender.” This framing erases great diversity in world-historical cultural understandings by presenting them all as one unified third category added to binary sex/gender. The “third gender” approach makes the fundamental error of ignoring intersectionality (Collins and Bilge 2016) and its insight that gendered experiences always vary—not just between cultures, but within them, by race/ethnicity, class, sexuality, disability, and many other social positions. In addition, this third gender category is posited as some “primitive,” exotic concept that exists outside Western experience. This is not just ethnocentric, it ignores nonbinary experiences within Western histories. Another error we must avoid is the one that comes out of Western LGBTQIA+ advocacy-related scholarship. This is an error of essentialism: one that treats whatever understanding of sex, gender, and sexuality that is held by the scholar-advocate writing

Beyond Binary Sex and Gender Ideology   201 at that time as eternal and universal. This misrepresents other cultures in an effort to appropriate them to mobilize support for the authors’ particular advocacy movements (such as “gay liberation” in the 1970s, trans rights in the 2000s, etc.). And a final error to avoid is that of romanticization. Romanticized visions of cultures that have granted social recognition of nonbinary sex/gender(s) presume they must be free of patriarchy, stigma, and/or rigid gender categorization. This is false; cultures that recognize nonbinary sex/gender categories have often still been patriarchal and/or have stigmatized sex/ gender variance outside the categories recognized by that culture. These caveats having been stated, a survey of world sex/gender systems reveals that nonbinary figures and roles have long existed, providing evidence that binary sex/gender is socially constructed. In fact, nonbinary sex/genders are recorded from the earliest historical records (Peled 2016). In ancient Egypt, for example, a major divinity was Hapi, god/dess of the Nile, an intersex divinity depicted with breasts and a phallus.1 Children born intersex might serve at a temple of Hapi, their physical form seen as divinely inspired, not “disordered” as it is under contemporary Western sex ideology. In ancient Greece, the god/dess Hermaphrodite (whence came the contemporary term “hermaphrodite”) was viewed as embodying the physical perfection of unsundered sex, and much revered. The ancient Greeks produced not only numerous statues and paintings of Hermaphrodite, but of real intersex adults and children, whose bodies were much admired. Ancient Greece also bequeaths us a number of classic stories of gender transition, such as that of Tiresias.2 Nor was gender transition limited to mythic stories; the worship of a number of Greek goddesses was recorded as being led by priestesses who were raised as boys, but gender transitioned out of male status to serve in the temples. Older Western histories refer to these individuals as eunuchs (Roller 2002), and contemporary ones may refer to them as trans women (Ball 2017), but both of these are projections backward of the historians’ understandings. It seems most accurate to say that these priestesses did not understand themselves as castrated men or as typical women, but as a possessing a liminal, sacred sex. The Western ideology of imperative binary sex/gender did not exist in the ancient past, nor indeed did it arise initially with the Judeo-Christian tradition, despite the existence of the phrase “male and female created He them” in Genesis. Under traditional Jewish halacha, or religious rules, the birth of intersex individuals was recognized under an array of four birth sexes: male, female, androgyne (both), and tumtum (neither), with androgynes responsible for carrying out the religious duties of both men and women, and tumtums responsible for no gendered religious duties (Cohen 1999).3 Arising from Judaism, Christianity initially followed the four-sex system of halachic birth sex assignment. It was not until the Middle Ages that Christian doctrine turned away from recognizing nonbinary sex/gender. Over the course of this era, the phrase “male and female created He them” came to be understood as an imperative, and what we now term sex/ gender essentialism was consolidated in European societies. So at the time European colonialism emerged, binary sex/gender ideology held sway in Europe. European colonists encountered indigenous peoples around the world who differed from them in many ways, one of these being that they often recognized physical

202   Cary Gabriel Costello sexes and gender roles beyond the binary. But core to the European belief system that justified colonialism was the trope that the Europeans were bringing the “gift of civilization” to benighted peoples—converting them to Christianity; bringing them knowledge of rational thought and science; reforming them of “native sloth”; teaching them about “civilized” dress, habits, and comportment. Part of this “civilizing” agenda involved reforming indigenous sex, gender, and sexual cultures (Cleves 2014). Throughout the Americas, European colonists encountered what are now collectively referred to as “two-spirit” systems of sex and gender. This term is an English translation from the Ojibwe niizh manidoowag, but different Native nations had their own names for nonbinary sex/gender(s) (the Navaho nádleehí, the Zuni lhamana, etc.) (Brayboy 2017). Visibly intersex children would be presumed two-spirit from birth, but indigenous American cultures also allowed individuals to self-identify as nonbinary and transition to this status regardless of birth anatomy. Some nations recognized one nonbinary sex/ gender, and others two or more. The First Nations’ cultural roles for those of nonbinary sex/gender varied just as those did for the binary men and women among their societies (Pruden and Edom 2016). In many, two-spirit individuals were seen as having special, valued spiritual roles due to having a liminal gender. For the European colonists in the Americas, however, nonbinary sex/gender was viewed very negatively. French colonists named two-spirit individuals berdache, a term believed to derive from the Arabic bardaj, meaning “slave” (Brayboy 2017). In French at this time the term berdache was used to denote a boy kept by a man for sexual purposes—a cultural concept having nothing to do with two-spirit indigenous social roles. Nevertheless, Euro-American anthropologists continued to use the term berdache to refer to nonbinary Native genders until the end of the twentieth century. In English, colonists often referred to two-spirit individuals as “sodomites” or “transvestites”—both pejorative terms for what the colonists viewed as sinful behavior, rooted in binary sexessentialist ideology, that misapprehend nonbinary indigenous understandings of bodies and behavior. This same pattern of cultural imposition took place in other locales around the globe. In South Asia there is a long tradition commonly referred to in Euro-American scholarship using the term hijra, though there are many variations on this sex/gender category in terms of practices and the names under which it is known in different languages (Reddy  2005). Once revered as occupying a special spiritual role,4 the hijra suffered greatly under British colonialism. Their very existence was outlawed under the Criminal Tribes act of 1871, as British colonial authorities framed the hijra through a binary sex/ gender lens as male “sodomites,” and as men indecently dressed as women (Gannon 2009). A similar story can be told regarding European colonialism in other areas. Polynesian societies once had prominent nonbinary sex/gender roles—the Hawai’ian mahu, Samoan fa’afafine, Cook Islands akavaʻine, and so on (Besnier and Alexeyeff  2014). These were repressed under Western colonialism as “sodomites,” “homosexuals,” or “transvestites.” But in some areas of the globe that were lightly colonized, nonbinary sex/ gender roles persisted with little change. In South Sulawesi, Indonesia, for example, the

Beyond Binary Sex and Gender Ideology   203 Bugis people have upheld their ancient, quintic gender system, recognizing a spectrum of complete men, quasi men, intersex people, quasi women, and complete women (Davies 2006). Their intersex category, bissu, is the gender from which shamans are drawn. Even in this isolated area of the globe, however, the contemporary era of social media has arrived, and today traditional social gender understandings are being displaced by the medicalized Western paradigm of gender transition. This may be framed as positive evidence of individual gender agency, or negatively as cultural imperialism; it’s likely that both are simultaneously true in the encounters between once-isolated indigenous peoples and the West today. Finally, we should note that despite the “official” religious and scientific insistence on binary sex/gender from the Middle Ages through the contemporary period, European traditions that flouted this ideology always persisted. Examples include English mollies, Italian femminielli, Albanian sworn virgins, and Byzantine eunuchs (Vincent and Manzano 2017). Some of these groups, such as the English mollies, faced constant persecution, but others, such as the sworn virgins, were widely socially respected despite the general policing of binary sex/gender in other local contexts at the time. So binary essentialist notions, while hegemonic for centuries of Western history, were never universal.

Nonbinary Sex and Gender in the Contemporary Context Today we see both a flowering of nonbinary sex and gender understandings, and a continued imposition of binary sex/gender ideology. Around the world, decolonizing movements of indigenous peoples are recovering traditions, languages, and practices that were suppressed by European colonizers. In some areas, traditional nonbinary groups have secured legal recognition—for example, hijra individuals in India, Bangladesh, and Pakistan can receive passports classifying them as neither men nor women but as members of another gender. But most institutions in the West—legal, medical, and religious—continue to insist upon recognizing only binary sex/gender. Catholic and Evangelical Christian organizations today, no less than in the colonial period, claim that the biblical phrase “male and female created He them” is not a poetic general statement, but a divine declaration of policy and imperative for human embodiment and behavior. This insistence centers on patriarchy, framed as “complementarianism” as it justifies gender inequality as simply a matter of innate, divinely–intended difference between complementing dominant men and nurturing women united in heterosexual marriages. Heteropatriarchy being understood as God’s plan for human nature, same-gender relationships, gender transition, nonbinary gender identities, and intersex statuses are all framed as disorder and “unnatural.”5 Pope Francis has stated that the very idea of “gender theory” (i.e., that sex and

204   Cary Gabriel Costello gender are distinct phenomena and that gender identity exists) is as dangerous to human survival as nuclear weapons, and decried medical transition techniques as evil (Brammer 2017; Saul 2015). Meanwhile, the American white evangelical Christian ideology of sex, gender, and sexuality was recently codified in the Nashville Statement (Council on Biblical Manhood and Womanhood 2017). It summarizes complementarian binary sex/gender ideology and declares as sinful same-gender relationships, gender transition, and failure to seek a binary sex assignment as an intersex person or parent of an intersex child. While religious descriptions of nature are often perceived as being in conflict with scientific ones, in the arena of sex/gender ideology, the two align fairly closely today. It is true that they aligned more perfectly in the 1950s–1970s, when “homosexuality” and “transvestism” were both considered mental illnesses to be cured through such drastic therapies as shock treatments and painful aversion therapies (e.g., Callahan and Leitenberg 1973). It was in this context in the mid-twentieth century that intersex “repair” surgeries became the standard of care, and “sex change clinics” emerged in the United States (Stryker  2017). Intersex genital reconstructions were obviously intended to enforce the ideology that bodies of nonbinary sex are unacceptable. And the initial “sex change clinics” were also founded by medical practitioners who viewed them as serving binary sex/gender ideology, as they were conceived of as “curing effeminate homosexuals” by transforming them into gender-conforming women (Hausman 2012). In the twenty-first century, conversion therapies for LGBT people are no longer mainstream American medical practices (though they persist, particularly in evangelical communities), and same-gender marriage is legally protected. But contemporary trans people continue to struggle for embodied autonomy and acceptance. Access to therapies that can alter physical sex characteristics is controlled by the medical profession, and conflict with medical gatekeepers is a common issue—particularly for those who are transgressive in their gender expression or have nonbinary gender identities, those who are poor or of color, and those who are minors or elders (Spade 2003; Sumerau and Mathers  2019). And many trans people also suffer from the sometimes-violent policing of binary physical sex expectations by members of the general public. Transfeminine individuals who do not wish or are unable to access genital reconstructive surgery are particularly vilified, with their nonconformity to binary genital sex expectations being framed as making them sexually dangerous and deceptive (Lee and Kwan 2014). The myth that trans women are really cis men posing as women in order to peep at them in binary-gender-segregated spaces like bathrooms is regularly drawn upon to generate opposition to the social acceptance of gender transitioners—and propaganda deploying this trope typically stereotypes a trans woman as a hairy, muscular, square-jawed person in poorly-applied makeup. Thus, having a body that fails to conform to binary, cisgender expectations is portrayed as threatening. This image and linked myth of sexual danger are deployed to oppose covering the costs of medical transition as well as to assert that trans people must be segregated out of gendered public spaces such as bathrooms (Schilt and Westbrook 2015).

Beyond Binary Sex and Gender Ideology   205 Meanwhile, physical conversion therapies in the form of what amount to unconsentedto infant sex-reassignment surgeries remain the mainstream standard of care for intersex children in the United States and most wealthy industrialized nations (Davis 2015). This remains the case despite its being declared a human rights violation by the United Nations (2016), after decades of intersex advocacy opposing unconsented-to genital reconstructions. Intersex advocates decry the imposition of genital “normalizing” surgery upon intersex children as it sometimes assigns a child to a binary sex with which they do not mature to identify, and even for that majority who do grow in our social context to accept their binary assignment, often destroys some or all capacity for sexual sensation, reduces fertility, requires multiple painful revisions, impairs relationships, and causes other harms (Costello 2019, Karkazis 2008). And many more people deal with the sequelae of genital “normalizing” surgeries than are generally assumed. One reason most people in the contemporary West are unaware of the commonplace nature of sex variance is the array of efforts being made to erase it physically via medical interventions to treat “disorders of sex development,” and the training of intersex people and their parents to keep intersex status closeted (Viloria 2017). Another reason is simply diagnostic sleight of hand. Apparently in an effort to protect fragile masculinity, most children born genitally sex variant and assigned male at birth today are diagnosed as having “hypospadias,” and the intersex nature of this diagnosis is obfuscated. Parents are told their children are “boys with penile malformations,” not “intersex infants,” and that the “condition” is easily cured via necessary surgery. In the United States, 1 in 125 children assigned male on their birth certificates are diagnosed at birth with hypospadias (Paulozzi, Erickson, and Jackson 1997). This number may seem surprisingly high, given that most popular writing on intersex issues cites a 1-in-2,000 figure (see, e.g., James 2011). But consider this: when urologists studied photographs of the penises of 500 adult men who had never been diagnosed with any genital disorder, they classified a full 45 percent as hypospadiac (Fichtner et al. 1995). Of course, a study of rates of intersex traits in people assigned male at birth based solely on visual assessments of photographs of external genitalia cannot be definitive of the total prevalence of intersexuality in this population. A person determined by a urologist to have a penis that appears typical in a photograph could still have an intersex genotype (such as XXY), possess one or more ovotestes or ovaries, have a uterus or substantial prostatic utricle, etc. But what this means is that the estimate in this study that 45% of men are at least to some degree intersex is an underestimate, contrasting dramatically with the 1-in-2000 figure so commonly cited. How can it be that medical estimates of how many people are intersex range from 0.05 percent to 45 percent—a figure 900 times larger? The answer is that sex really is a spectrum. In order to be classified as “normal,” urology textbooks say the urethra should open at the very tip of the penis. In endosex vulva, the urethra opens at the level of the pelvic floor. In intermediate genitalia, the opening may be in any position between the tip of the phalloclitoris6 and its base at the pelvic floor. So, when the urethra opens on a penis at some point below the tip on the penile head or shaft, a person is on the intersex spectrum. If the opening is just a few millimeters below the tip, they are just a tiny bit

206   Cary Gabriel Costello intersex, and nobody—doctor or penis-possessor—is likely to care, because the individual will not face any stigma. If the opening is on the shaft of the phalloclitoris, a child will definitely be diagnosed with hypospadias and surgery advised. How far the urinary opening needs to be from the exact top of a phallus before the child is diagnosed with a “disorder of sex development” or “DSD” is a subjective matter. Technically speaking, 45 percent of all male-assigned people have hypospadias as it is medically defined. Pragmatically speaking, it’s 0.8 percent of babies given a male assignment who get such a diagnosis at birth. The idea that people could happily flourish in bodies of visibly nonbinary sex seems to strike most contemporary Western doctors as incomprehensible—they debate the timing and types of surgical “correction,” but not the practice itself (see, e.g., Mouriquand et al. 2016). And this same perspective deeply influences the medical gender transition paradigm. Like intersex “corrective” surgeries, medical hormonal and surgical gender transition procedures are described by medical authors as normalizing trans bodies to binary sex expectations, which is framed as necessary for the mental health and safety of the patient (Talley 2014). This is the so-called “passing” narrative—a highly problematic term in that it implies a “successful” trans person is one who deceives others by looking like a cis person of their identified gender. After all, in other contexts, the phrase “passing as X” is used to mean “pretending to be X”: someone “passing as a straight woman” is not actually straight (Pfeffer 2014), and someone “passing as a nonJew” is actually Jewish (Daalder 2016). One problem with this framing of gender transition as centered on medical interventions allowing a patient to “pass” as cisgender members of their identified gender is that the risks visibly trans people may face—harassment, assault, discrimination, social and romantic rejection—are not medical but social. By analogy, it’s as if doctors were claiming that the existence of racism requires them to treat babies of color with surgery and medications to try to make them appear white to reduce their risk of suffering discrimination. Such an approach naturalizes bigotry and leaves it unchallenged. It blames the victim of discrimination or harassment by framing their body as the problem (Sumerau and Mathers 2019). This paradigm of framing as “necessary” trans conformity to cisgender physical expectations also blatantly ignores those who have a nonbinary gender identity or are agender. Its narrative of “successful transition” excludes people with nonbinary identities, who do not wish to simply switch binary checkboxes. This makes negotiating medical transition services difficult for many nonbinary gender transitioners.7 And while trans demographics are severely understudied, it appears that currently perhaps a third of US young people who do not identify with their birth-assigned sex today have nonbinary gender identities (Rider et al. 2018). In sum, today both intersex and trans individuals struggle with issues of autonomy over the sexed body in the context of medical practice. But the direction from which harm comes for the two groups is reversed: intersex people struggle today for freedom from forced infant sex-reassignment surgeries. Meanwhile trans people struggle to gain access to medical treatments they desire (while simultaneously battling a social

Beyond Binary Sex and Gender Ideology   207 ­ rejudice held by doctors and laypeople that frames trans people who do not access p hormones and surgeries as not being “real” members of their identified genders).

Case Studies I will now illustrate how factors discussed earlier play out in contemporary sex/gender minority communities by presenting several case studies of people who are intersex and/or transgender. These case studies come out of a longitudinal qualitative research project examining how people embody in avatars in the virtual world of Second Life. One aspect of this research has been examining how people use Second Life to explore their sex/gender, both through avatar expression and via support groups in the virtual world. The body of data I have collected during a decade of research includes 134 semistructured interviews of a mean length of 2.25 hours, and over 6,000 hours of participant observation. In the course of the project, I have interviewed individuals in a series of Second Life support and social groups, including those for trans, nonbinary, and/or intersex people. Seventy-eight of my interviewees to date are members of one or more of these groups. Many people are drawn to virtual worlds because they allow for easy, low-risk exploration of sex and gender. Unlike the highly constrained avatar embodiment choices allowed for in video games, Second Life allows for almost infinite avatar customization, and one can change from being a two-foot-tall winged faerie girl into an eight-foot-tall, hypermuscled man and then into a sexless silver cyborg as easily as one changes shoes in real life. This makes Second Life very appealing to trans people (binary and non), gender transgressors, kinksters fond of genderplay, artists, and curious people of all stripes. My interviewees often contrasted gender dysphoria they experienced in real life with gender euphoria they experienced while embodied in their Second Life avatars. They spoke of the ease and safety of changing sex/gender characteristics in Second Life, distinguishing it from the expense and difficulty of real-life transition. If someone reacts negatively to one’s avatar, one can instantly teleport away and block the harasser from being able to make further contact. Furthermore, since Second Life profiles are not required to contain any information about the real-life person behind a given avatar, bigots can’t cause a person with a gender-transgressive avatar trouble with their real-life careers, families, and so on. And Second Life has numerous support groups and clubs within its world to meet the needs of various communities organized around sex, gender, and sexuality. These conditions make it an excellent setting in which to find and interview sex- and gender-variant people. I have already used data from my Second Life study to illustrate commonalities and tensions between intersex and trans communities (Costello  2016). In that research I focused on the typical narratives shared widely by my trans and intersex interviewees, centering a desire for autonomy over physical sex characteristics and for social acceptance.

208   Cary Gabriel Costello Here I will instead present case studies of several atypical interviewee narratives, because they usefully delineate the boundaries between what is considered normative or unacceptable in such communities today. These case studies reveal deep fissures and tensions within contemporary sex and gender minority communities regarding ideas about binary sex and gender. I will first present two brief case studies where interviewees express regrets regarding conformity to binary sex and gender expectations that currently strongly shape gender transition. The first case study, that of Cam,8 a trans man, illustrates feeling forced into a more binary appearance and gender expression than desired. The second, employing interview material from Zeta, an intersex trans woman, relates to feeling constrained from questioning genital reconstruction as the culmination of gender transition. Where most of my interviewees discussing gender transition shared a straightforward narrative of gender transition as liberating and finally allowing full self-expression, Cam and Zeta discussed feeling in some ways silenced by a binarist narrative.

Cam Cam was a trans man in his mid-thirties. He presented as a very androgynous man: wearing outfits that exposed a smooth, pale, and hairless midriff, he favored eyeliner and sparkly bangle bracelets, and employed feminine, dramatic avatar animations. Cam had begun his real-life gender transition 7 years prior to our interview and had accessed a series of medical procedures commonly recommended to trans men: hysterectomy, chest reconstructive surgery, and hormone replacement therapy with testosterone. He said, I knew I wasn’t a girl. I definitely wanted the top surgery and T, and just, you know, went with the program. I got a crewcut. I grew a little beard. My hairline receded. I wore the most guy clothes I could get. But at some point my body changed more than I wanted. And the macho dude thing just seemed too much . . . Why couldn’t I grow my hair long, swish it around? Wear a skirt sometimes? But I couldn’t say these things to the guys in my support group or my therapist. To them, you were a trans guy because you hated girly stuff.9

So Cam’s trans support networks enforced binary gender conformity. And when he tested the waters, bringing up the case of a supposed acquaintance who wanted to reverse some of his body changes, the reaction was powerfully negative. They said that that person must be an idiot. Insane. Totally confused. And not only that, dangerous. Because he’d just be giving ammo to the [trans]phobes who say we regret our transitions so we shouldn’t be allowed to do them. So, you know. I don’t regret gender transitioning. I just wish there was a middle place I was allowed to get off on. But I can’t say that. So I do the dudely thing in real life. I’m just glad I found the femboy community here [in Second Life] and can wear a skirt and have zero body hair on my avatar.

Beyond Binary Sex and Gender Ideology   209 Cam’s experience shows that in social milieux where trans conformity to binary gender norms is strong, nonbinary identities, and desires for some kind of intermediate physical gender transition, may be secretly held, kept silent by community pressures that frame androgyny as undermining the legitimacy of the trans community.

Zeta Another variety of resistance to transition narratives was brought up by Zeta, a bright, sharp-tongued woman fond of dark, cyberpunk avatar aesthetics. Zeta, intersex by birth, was surgically assigned male in infancy and began her transition as soon as she reached her legal majority and could make medical decisions for herself. She found support both as an intersex person and trans woman in Second Life. Having started on her own transition path more than a decade before coming into Second Life, she helped support a number of Second Life residents as they negotiated how to start a medical transition. One of these was Kori. Many trans women lead socially marginal lives, but Kori was lucky. Her cis wife reacted well to her coming out, reconceptualized her partnership as a lesbian one, and supported Kori in her transition process. Kori had a job with high pay and status, and her place of employment had a nondiscrimination policy and helped Kori transition at work. So unlike many, Kori was in a place where she could methodically and very swiftly tick off every box on formulaic transition guidelines one by one. And these culminate in genital reconstructive surgery. Following these guidelines, a little more than a year after coming out, Kori began to lay plans for genital reconstruction and asked her social networks for help. One of the people she had regularly turned to for advice during her transition was Zeta. And Zeta confided to me that what she really wanted to do was tell Kori not to rush into something like this, but to seriously weigh the cons as well as pros of surgery. Many intersex people, like Zeta herself, have lost some or all capacity for sexual sensation due to genital reconstruction—though Zeta recognized there was a difference between surgeries imposed on tiny, unconsenting babies and surgeries sought out by adults who wanted them. Zeta wanted to push back against the narrative that a successful transition required genital reconstruction to conform to cisgender, endosex bodily norms. But Zeta did not voice her concerns to Kori. She told me, It’s just not the done thing. Trans women face a wall of objections, second-guessers and nay-sayers. There’s a world of cis people out there ready to gender police us, tell us we are choosing to ruin our lives, that we are crazy. That’s why we turn to other trans women with our near desperate need for support. And unfortunately, we don’t always get it. There are a lot of trans women who are pretty broken by all the [abuse] they’ve encountered. They’re drowning in need to feel less awful about themselves, and drowning people will pull you down with them. I’ve felt my share of boots in the face from other trans women trying to climb up to the promise of air, freedom, cispassability. I don’t want to seem like one of those people you reach out to and they kick you down. And to critique the practice of GRS—well, to many people, that

210   Cary Gabriel Costello looks like attacking the foundation of gender transition. It’s our holy grail, the pot of gold at the end of our parade of rainbow pride flags. We’re all supposed to dream of getting “the surgery.” I just feel I need to stay silent.

Kori went into the hospital for her surgery floating on a cloud of anticipation and the support of her wife and friends like Zeta. She was pleased with the aesthetic outcome. Unfortunately, as Zeta feared, Kori’s reconstructed genitalia were largely insensate. Kori came to reconceptualize herself as asexual and separated from her wife. Kori seemed content with the outcome. Zeta, however, told me she wished she’d spoken up—but also that she still didn’t see it as possible. She mused: We’re allowed to renounce GRS for ourselves. But as trans women, we are not allowed to critique it generally. That’s the prerogative of trans men, who get a trumpet fanfare for refusing to buy into phallic authority. For us, though, critiquing GRS will be read as proof we’re really men, unwilling to relinquish our dangerous penises, insisting we be allowed to bring implements of violence into women’s locker rooms. We have to speak in reverent tones of vaginoplasty.

Zeta’s narrative reveals that the pressure to conform to binary sex/gender expectations is particularly high for trans women, due to the force of transmisogyny, leading some to silence their own critiques of those expectations. These first two case studies reveal how trans people can feel silenced and constrained by binary conceptions of gender transition. I will next turn to two longer case studies in which trans interviewees consider intersexuality—and come up with diametrically opposed conclusions about the nature of gender. These two interviewees were fascinating to me, not because they were typical—they were atypically savvy in their deployment of gender theories and adhered to rather extreme ideologies. But they are illustrative of trends in different branches of trans community advocacy that reach very different conclusions—while sharing in common a deep commitment to gender essentialism. In so doing, each commits lateral violence against people like the other.10 In the usual understanding of social scientists who study gender, essentialism is associated with misogyny and transmisogyny. Essentialism is understood as basically a claim that universal physical sex binarism underlies immutable patriarchal gender relations. Social constructionism is framed as permitting liberation from this ethnocentric fallacy: gender inequality is socially produced and can be eliminated; gender roles and identities change over time. So social scientists and academic gender scholars tend to presume advocates for those of variant sex/gender will hold a constructivist view. But in fact, there is a substantial history of LGBT+ advocacy that takes an essentialist perspective. This is well illustrated by the “born this way” motto deployed to support same-gender relationships. Against a claim that “homosexuality is an immoral choice,” sexual ­orientation essentialists deploy the argument that sexual orientation is innate, somehow biologically determined, and impossible to change.

Beyond Binary Sex and Gender Ideology   211 The two individuals I will now discuss spoke of gender identity in this way: as innate and immutable and therefore requiring respect. But the essentialist stories they told were diametrically opposed in their vision of the nature of sex and gender, which they fascinatingly illustrate when describing intersex people and how they should be treated. I will refer to them here by the pseudonyms Nora and Baily.

Baily Baily was a nonbinary individual who embodied in a variety of colorful avatars in Second Life, many of them of anime or cartoon appearance. On the day of our interview, they appeared as a youthful, androgynous, pale blue anime humanoid with a unicorn horn and rainbow colored hair. Baily described themself as lacking a gender identity. It’s common for people in Baily’s position to describe themselves as agender, but Baily preferred the term “gender atheist,” a term they had encountered through an online community network. Baily explained, I dont like the word nonbinary because it has the word binary in it. I dont like the word agender because its saying gender is real, and Im missing one like some people are missing a leg or something. I dont have a gender identity because they arent real, they are socially constructed . . . Gender is a myth. People believe in it like they believe in god and get all offended if you say it isnt real. But it isnt. And it always harms women. So trans people today are putting all this energy into a system that is always patriarchal. Its not progressive at all. But critique the cult of gender and trans people jump all over you.

In Baily’s worldview, in an enlightened world in which patriarchy were eliminated, everyone would be like them, having no gender identity. They would dress and behave androgynously and be pansexual, because this was, in their view, humanity’s natural state. These beliefs put Baily in an odd position vis-à-vis the entire LGBTQ+ community. Essentially, Baily viewed all sexual and gender identities as fallacies, taking the essentialist position that social constructs, unlike biological phenomena, are not “real.” Thus, identifying as a man or as two-spirit, or as lesbian or gay, was delusional according to Baily’s theory. But in critiquing sex, gender, and sexual minorities for what they viewed as being wedded to delusions, Bailey focused their comments on critiquing a particular group: binary trans women. Baily’s critiques of trans women followed classic transmisogynist tropes: they presented trans women as hyperfeminine and as insisting that women be understood as passive, decorative, and submissive. That cis women regularly wear dresses and cosmetics was excused by their being forced into identifying with their own oppression through childhood socialization. But for someone to choose feminine womanhood, which Baily equated with objectification and sexual display for men’s patriarchal pleasure,11 was not

212   Cary Gabriel Costello to be forgiven in the same way. Baily believed trans women’s gender identity and expression reflected “what happens when you are socialized as a boy—you think patriarchy is fine, and you tell women that.” Baily’s position was transmisogynist in its portrayal of trans women as uniformly hyperfeminine, clueless about feminism, and as seeking to entrench regressive gender roles. It’s notable that Baily raised no critique of trans men as hypermasculine, as clueless about feminism, or as benefitting from patriarchy and seeking to retrench regressive gender roles. Baily followed the trans-exclusionary radical feminist (TERF) line of social-media argument that gender socialization takes place significantly only in youth and is based on genitals. This links binary sex essentialism with a sort of childhood gender socialization essentialism. Thus, because they were born with penises, trans women are presumed to have been permanently socialized as oppressors and held to benefit from patriarchy, no matter how many years they live in their identified gender and are treated as women by others. Meanwhile, having been born without penises, and thus presumed socialized as victims of patriarchy, trans men are absolved from being viewed as patriarchal oppressors, no matter how long they live as men, how they act, and how they are treated by others.12 Baily saw gender identities as myths produced by gender socialization, and gender socialization as destiny. This begs the question of how Baily could have escaped this destiny to achieve what they viewed as an enlightened freedom from having a gender identity. Fascinatingly, Baily attributed what they viewed as an escape from the trap of having a gender identity in part to learning about intersexuality. (As one line of my research involved relating intersex and trans narratives in Second Life sex/gender minorities, I asked my intersex interviewees their thoughts on gender transition and my trans interviewees their thoughts on intersexuality.) Baily expressed great sympathy for intersex children who are subjected to forced medical interventions to try to make their bodies conform to binary sex expectations. For them, intersex people’s experiences revealed the artificiality of binary gender for all. It really opened my eyes when I learned about [the sex spectrum]. Our society tries to hide that with surgeries on intersex babies. But really there is no binary sex. Not for anyone. Its a myth. Its like we’re all intersex, really. And this is where I feel dysphoria. Intersex bodies shouldnt be erased. And Im taking T and I dont think of it as making me a man somehow because binary sex is a lie. And I dont think its bad at all that my body will never look like people think a mans body should. It will be more like looking intersex and thats great.

Baily presented themself as having their consciousness raised by learning that sex is by nature a spectrum, allowing them to escape all ideology about gender that others were trapped into via their socialization. And Baily presented themself, not as gender transitioning based on a gender identity (which they saw as a fallacy), but as changing their body to look intersex in a way that would reveal binary sex as a lie. In essence, Baily

Beyond Binary Sex and Gender Ideology   213 presented binary gender transitioners, especially trans women, as dupes, but themself as enlightened, because Baily was transitioning out of an illusion of binary sex, into what they perceived as the reality of universal intersex status.

Nora Nora, a trans woman in her thirties, presented as a professional white woman with long brown hair and unusually conservative dress by Second Life standards—a sort of business casual look featuring skirt suits with feminine, tailored jackets. Nora interested me because she too spoke a lot about intersexuality. Not only did she, like Baily, relate intersex experience to herself, she spoke about intersex appropriation as a problem—and that problem as she saw it was precisely people like Baily. Nora and Baily were polar opposites, each of whom saw trans people like the other as dangerous and delusional. Whereas Baily saw binary sex as a myth and gender identity as akin to a cultish religious faith, Nora saw binary sex as a “biological fact of nature you can’t ignore.” Nora followed the orthodox scientific belief that evolutionary biology requires binary sex. However, Nora acknowledged that sometimes children are born intersex. Like Baily, she spoke with great sympathy for intersex children, whom she framed as facing stigma due to something beyond their control. And also like Baily, Nora identified with intersex people. But her vision of what that meant was very different: We all have genitals, chromosomes, and a brain sex. Those line up for most people. But sometimes they don’t. Someone might have XY chromosomes but female genitals. Scientists call that intersexed. Well, the same is true for me. My brain sex is female, but it didn’t match my genitals. And scientists now know that brain sex is set by hormones before you are born. The mistake people used to make was thinking that when [sex characteristics] don’t all line up, genitals were the thing you should use to decide someone’s real sex. But now scientists say brain sex is the most important factor. So, when someone is intersexed, you have to figure out what their brain sex is to know if they should be treated as a man or a woman. And trans people are really just one kind of intersexed people. Our brain sex determines the sort of treatment we should get.

According to Nora, trans people suffer from a medical disorder because they are intersex, and thus require medical interventions to correct their disordered bodies. This medicalized line of argument is strongly rejected by intersex advocacy, because of the way it posits interventions into intersex children’s bodies as necessary and good. This argument is commonly termed “trans misappropriation of intersex experience” by intersex advocates. But when I asked Nora if she had ever heard of the phrase “intersex appropriation,” she vigorously agreed—but raised a very different issue. “Oh,” she said, “you’re talking about transtrenders.”

214   Cary Gabriel Costello Nora distinguished between “true trans” people and what she called “gender players.” Second Life, she complained, was full of gender players, outnumbering true trans people by a hundred to one. Nora bitterly bemoaned the dominance of Second Life clubs and spaces that called themselves “trans” by people she saw as cis men engaging in fetish play. These individuals labeled themselves “shemales,” “futa,”13 “traps,”14 and “trannies,” sporting avatars that combined outsized breasts and penises for sexual kink purposes.15 In parallel to viewing virtual worlds as overrun by cis men engaging in genderplay as sexual kink, Nora viewed the Internet as overrun by cis women and girls engaging in genderplay in the realm of trendy politics, “claiming they have all sorts of silly gender identities.” For Nora, real gender identities were binary. All nonbinary gender identity claims were foolish fantasies. Actual, real trans people are women or men. We have female brains, or male ones, just like cis women and men. It’s simple. And then along come these transtrenders with their million different special snowflake things they want you to call them. You know, boydyke. Or whatever. And it boils down to they’re all just kind of tomboys. They’re assigned female at birth. They don’t identify as men. They just somehow got the idea that it’s not cool to be a woman, or that if you like sports or like girls you can’t really be a woman.

Like Baily, Nora voiced assertions typically associated with TERFs—here, that gender-transgressive young people are brainwashed by trendy gender ideology into believing they should become gender-conforming by transitioning. Both Baily and Nora mobilized what could be termed “gender memes”—phrases circulating in social media, deployed in very different ways by parties with differing ideological agendas. When it came to the idea of appropriation of intersex experiences, Nora said: So these transtrenders will tell you that everything they say is justified by intersex people existing. They say sex isn’t really binary, gender isn’t really binary, because intersex people exist. But I’ve actually done my homework. I’ve read what actual intersex people say. And they say they’re sick of radicals who think real intersex people must have nonbinary identities. But really, the vast majority of intersex people identify as women, or men.

In fact, Nora’s claim does reflect the writings of some prominent intersex advocates— a level of knowledge unusual among my endosex interviewees. But I’d note that the assimilationist school of intersex advocacy Nora’s claim reflects is often associated with transmisogynist statements, which she omitted. Nora seemed unusually well-versed in contemporary gender debates, and she cherry-picked from them phrases and partial arguments she deployed with practiced ease. One of the themes that unites the positions of both Baily and Nora is that they seek to bolster their advocacy for their positions by equating themselves with intersex people, positioning themselves as endosex allies in so doing. But Baily frames intersex people

Beyond Binary Sex and Gender Ideology   215 who identify as men or women (or really, as having any gender identity at all) as dupes who have failed to understand the message of their own bodies. And Nora frames intersex people as all having binary gender identities, determined by hormonal exposures in utero that set a binary “brain sex.” So both wind up telling intersex people what their experience “should be,” which is presumptuous. Another commonality of the two narratives is that Baily and Nora both seek to police the boundaries of trans identities and communities, in ways that would exclude the other. For Baily, all people are by nature agender, and all gender identity claims are false consciousness—but those of trans women are particularly suspect. For Nora, nonbinary gender identity claims are ludicrous, and only binary gender transitions are legitimate. Nora is a binary sex/gender essentialist who just locates essential sex/gender in a “brain sex” rather than genitals. Baily is a nonbinary essentialist. Both of them position social constructs as “fake”—rather than as the fundamental reality of human experience that sociology shows them to be. The world history reviewed in this chapter shows us that multiple sex and gender categories pervade human history. What is ironic is that both Baily and Nora would frame all this history as “false consciousness,” in order to shore up their identities in a world that views them as deviant for failing to adhere to the ideology of “natural” binary genital sex essentialism. The extremity of their opposing positions, and the way each commits lateral violence on others suffering from similar marginalization, result as each of them seeks to justify their legitimacy in a world that stigmatizes them. This is sad, but theoretically useful to understand, as Baily and Nora illustrate contrasting contemporary views of binary sex and gender.

Conclusion Throughout world history, intersex people have been born. Many traditional societies accommodated such people via three, four, or more social sex/gender categories, and had socially recognized ways to move into those categories. But binary sex/gender ideology became entrenched in Europe, and then exported and imposed on much of the rest of the world via colonialism. Then, in the twentieth century, new medical procedures enabled two opposing phenomena: the erasure of intersex variance, and the “sex change”—both deployed by doctors seeking to “cure” sex and gender variance. Today, movements have grown to resist physical enforcement of binary sex/gender ideology. We see intersex advocates arguing for the right to retain variant bodies, binary trans people asserting that the legitimacy of their transitions should never be deemed dependent on accessing any particular medical service, and nonbinary trans people seeking to relegitimate identities like theirs. These advocacy movements are resisted— not only by transphobic conservatives, but by people who are themselves trans and/or intersex, who fear that positions asserted by others in the community will worsen their oppression. As illustrated by the case studies of Cam and Zeta in this chapter, this leads

216   Cary Gabriel Costello some people with nonbinary sex/gender statuses to self-censor, lest they be viewed as threatening their fellow travelers. Others, like Nora and Baily, appear to feel that the best defense is a good offense, and freely attack others for “transing wrong.” Yet Nora and Baily both recognize nonbinary sex—in fact, they seek to frame themselves as intersex, and as thus justified by nature in asserting their self-understandings (though they come to opposite conclusions about that nature being one of binary gender identities or nonbinary essentialism). These case studies illustrate a changing landscape, in which nonbinary sex and gender understandings repressed by European colonialism are re-emerging in forms old and new today.

Notes 1. Embodiment of this variety is associated in the contemporary Western imagination with trans women, but it is a body form that naturally arises without medical intervention in various intersex statuses. 2. The myth of Tiresias, blind prophet of Apollo, involves Tiresias’s transformation from man into woman, then 7 years later, back into a man. 3. Halacha also recognized additional genders for those born appearing typically male or female: aylonit—one who appears female at birth but develops a beard at puberty, and saris—one who appears male at birth but feminizes at puberty, or who is castrated by accident, force, or choice. 4. As religious devotees of the goddesses Bahuchara Mata, Shiva, or other deities, hijra perform important social rites such as dancing for the fertility of a new couple at their ­wedding, or to bless a newborn baby. 5. Of course, truly unnatural phenomena by definition cannot occur, which is why there is no religious campaign against humans choosing to reproduce by budding like yeasts. 6. The phalloclitoris is the name of the intermediate genital form all humans start out with in the womb, and it is an umbrella term for the full range of genital forms—phallic, vulvic, or intermediate. 7. The contemporary paradigm of legitimating gender transitions is explicitly founded upon a presumption of gender binarism, which makes the nonbodily aspects of transition more complicated for nonbinary transitioners as well. Examples of these challenges include the lack of nonbinary gender markers on most legal identification and resistance to respecting nonbinary people’s identified pronouns, such as the singular “they.” 8. Chosen names used in virtual worlds, games, and social media name can be quite identifying, so I employ pseudonyms to protect subjects’ confidentiality. 9. In accordance with the textual communication norms in Second Life, the interviewee block quotes appearing here were actually transmitted as a series of short statements, usually a single sentence or clause in length. I have for clarity “translated” this convention of synchronous textual communication into a continuous paragraph of text and have eliminated my interstitial textual nodding to indicate I was following the conversation. 10. Lateral violence is a problem in many marginalized communities, and it is hardly unique to trans contexts. But it is definitely an ongoing problem within trans communities; as Second Life resident Maren noted, “It is easier to fight with your sisters and brothers and others than with those oppressing you.” 11. I was frankly surprised when Baily voiced this femmephobic position, as their avatars gave me a femme-of-center impression. Addressing this later in the interview, I learned

Beyond Binary Sex and Gender Ideology   217 that Baily appreciated feminine expression when it was understood as subversive of gender norms (as in drag), pitied it when earnestly expressed by cis women, and objected to it when expressed earnestly by trans women. 12. This worldview is extremely phallocentric, which is one of the strange things about TERF theory, which decries phallocentrism while constantly talking about penises and how despicably powerful they are. While it seems especially strange that a nonbinary person who rejected binary sex ideology should espouse such a position, Baily is hardly unique in holding it. A nonbinary interviewee of mine who was assigned male at birth spoke about being single in real life, and thinking it unlikely that they would become partnered. They spoke very deferentially about the nonbinary community they interacted with in real life being made up of predominantly people assigned female at birth who would reject them as a potential partner, because they had a penis. They said they understood that this rejection was inevitable, as so many people were victims of sexual harassment and violence, which they’d experienced themselves. They did acknowledge that accepting the idea that experiencing patriarchal violence produces inevitable and eternal triggering by penises reinscribed a binary in a community that was supposed to be nonbinary. They treated this as sad, but something they must respect as a good feminist who defers to the experiences of trauma bearers. 13. Short for futanari, a genre of Japanese anime erotica featuring women with penises. 14. From the Western pornography genre in which a straight man believes he is being seduced by a cis woman, and by the time he discovers she is trans has been “trapped” by his lust into having a sexual encounter with her. 15. I can affirm from my own searches for Second Life interviewees that the number of Second Life residents describing themselves as “trannies,” “dickgirls,” or “futa” far outnumbers those describing themselves as “trans women” or “transgender girls.” This was a source of consternation for a good number of Second Life residents who were real-life gender transitioners.

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Beyond Binary Sex and Gender Ideology   219 Lee, Cynthia, and Peter Kwan. 2014. “The Trans Panic Defense: Masculinity, Heteronormativity, and the Murder of Transgender Women.” Hastings Law Journal 66, no. 77: 77–169. Mouriquand, Pierre  D.  E., Daniela Brindusa Gorduza, Claire Lise Gay, Heino  F.  L.  MeyerBahlburg, Linda Baker, Laurence  S.  Baskin, Claire Bouvattier, Luis  H.  Braga, Anthony A. Caldamone, Lise Duranteau, Alaa El-Ghoneimi, Terry W. Hensle, Piet Hoebeke, Martin Kaefer, Nicolas Kalfa, Thomas F. Kolon, Gianantonio Manzoni, Pierre-Yves Mure, Agneta Nordenskjöld, Joao Lius Pippi Salle, Dix Philip Poppas, Philp  G.  Ransley, Richard  C.  Rink, Rodrigo Romão, Leon Sann, Justine  M.  Schober, Hisham Sibai, Amy Wisniewski, Katja P. Wolffenbuttel, and Peter A. Lee. 2016. “Surgery in Disorders of Sex Development (DSD) with a Gender Issue: If (Why), When, and How?” Journal of Pediatric Urology 12: 139–149. Murphy, Jessica. 2016. “Toronto Professor Jordan Peterson Takes on Gender-Neutral Pronouns.” BBC News, November 4, 2016. https://www.bbc.com/news/world-us-canada-37875695. Paulozzi, L.  J., J.  D.  Erickson, and R.  J.  Jackson. 1997. “Hypospadias Trends in Two US Surveillance Systems.” Pediatrics 100, no. 5: 831–834. Peled, Ilan. 2016. Masculinities and Third Gender: The Origins and Nature of an Institutionalized Gender Otherness in the Ancient Near East. Münster: Ugarit-Verlag. Peterson, Jordan. 2018. 12 Rules for Life: An Antidote to Chaos. New York: Penguin Random House. Pfeffer, Carla  A. 2014. “’I Don’t Like Passing as a Straight Woman’: Queer Negotiations of Identity and Social Group Membership. American Journal of Sociology 120, no. 1: 1–44. Pruden, Harlan, and Se-ah-dom Edom. 2016. “Two-Spirit People: Sex, Gender & Sexuality in Historic and Contemporary Native America.” National Congress of American Indians Policy Research Center. http://www.ncai.org/policy-research-center/initiatives /Pruden-Edmo_TwoSpiritPeople.pdf. Reddy, Gayatri. 2005. With Respect to Sex: Negotiating Hijra Identity in South India. Chicago: University of Chicago Press. Reis, Elizabeth. 2012. Bodies in Doubt: An American History of Intersex. Baltimore: Johns Hopkins University Press. Rider, G.  Nicole, Barbara McMorris, Amy Gower, Eli Coleman, and Marla Eisenberg. 2018. “Health and Care Utilization of Transgender and Gender Nonconforming Youth: A Population-Based Study.” Pediatrics 141, no. 3: e20171683. doi:10.1542/peds. 2017-1683. Roller, Lynn. E. 2002. “The Ideology of the Eunuch Priest.” Gender & History 9, no. 3: 542–559. Saul, Heather. 2015. “Pope Francis Compares Arguments for Transgender Rights to Nuclear Arms Race.” The Independent, February 21, 2018. https://www.independent.co.uk/news /people/pope-francis-compares-arguments-for-transgender-rights-to-nuclear-arms-race -10061223.html. Schilt, Kristen and Laurel Westbrook. 2015. “Bathroom Battlegrounds and Penis Panics” Contexts 14, no. 3: 26–31. Spade, Dean. 2003. “Resisting Medicine/Remodeling Gender.” Berkeley Women’s Law Journal 18, no. 15: 15–37. Stryker, Susan. 2017. Transgender History: The Roots of Today’s Revolution. 2nd ed. Berkeley, CA: Seal Press.

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chapter 13

M a le Br east Ca ncer i n the Pu blic I m agi nation Piper Sledge

Breast cancer is the locus of some of the most visible biopolitical activism today. Second only to heart disease as a leading cause of death (National Heart, Lung, and Blood Institute  2010), cancer has an extraordinary degree of visibility in the United States. Of these cancers, female breast cancer has the highest incidence rate (Cronin et al. 2018). Our collective fear of cancer generally, as well as the strong presence of breast cancer in the media, affords breast cancer a central role in health policy, individual health behaviors, and cultural life. Broadly, gender-specific cancers1 have been taken up by sociologists to explore the ways that hegemonic gender norms shape how women and men respond to their diagnosis and treatment options as well as public discourse about these diseases (see, for example, Casper and Carpenter 2008; Hesse-Biber 2014; Oliffe 2009; Sulik 2011). These cancers, their diagnosis and treatment, and the activism connected to them highlights the link between ideologies of gender, health, and the body. A great deal of scholarship has attended to the biopolitical culture of breast cancer activism, querying why the movement became so successful and what such activism means for knowledge, agency, and the body (see, for example, Kasper and Ferguson 2000; King 2006; Klawiter 2008). Contrary to the image presented in public discourse, breast cancer is not only diagnosed in women. Male breast cancer is a small portion of the breast cancer experience with only 1 percent of cases diagnosed in men, although that number has been on the rise (Speirs and Shaaban 2009; Speirs et al. 2010; White et al. 2011). While breast cancer in cis men is slowly gaining traction within public discourse, transgender people remain firmly on the outskirts. Fenway Health, one of the oldest health centers dedicated to LGBTQ health care provision, research, and awareness, state in their public health pamphlet on breast cancer in transgender patients that “the risk of breast cancer in transgender and transsexual individuals is not well known.

222   Piper Sledge There have been no studies of breast cancer incidence in transgender and transsexual individuals” (Fenway Health n.d.). For both transgender and cisgender men, the lack of medical knowledge about breast cancer for these individuals can have serious consequences.2 Given the relative inconceivability of male breast cancer and the centrality of ideologies of femininity to breast cancer activism, treatment, and recovery support, what resources do men have to make sense of their diagnosis? The emphasis of normative femininity in popular, political, and professional discourse about breast cancer relegates cis and trans men to the margins of popular and medical discourses of breast cancer. These men do not fit the gendered scripts of breast cancer deployed in the media, much to the disadvantage of individuals in these populations. When this disease occurs in bodies that are outside the dominant frame of breast cancer discourse, the relative invisibility of breast cancer outside cisgender female bodies is challenged. Because hegemonic femininity is ubiquitous in media coverage of breast cancer, representations of the disease in men call into question the ways in which cultural ideas about gender, bodies, and identity intersect in discourses of disease awareness. In this chapter, I argue that in order to manage breast cancer in men, ideologies of masculinity are deployed in the service of increasing awareness, rendering treatment accessible, and reducing the potential for gender disruption for men with breast cancer, although this differs for transgender and cisgender men. Importantly, this differential deployment of masculinity sets up barriers to care for transmen while promoting means of access for cis men.

The Culture of Breast Cancer The dominant public narrative of breast cancer, as well as other reproductive cancers,  frames the disease in terms of normative gender ideologies (see Broom  2001; Clarke  2004; Kasper and Ferguson  2000; King  2006; Klawiter  2008; Phillips  2009; Sulik 2011). As Adele Clarke argues, “to be a ‘feminine’ woman is to be vulnerable to breast cancer and to be a ‘masculine’ man is to be vulnerable to testicular cancer” and that “the threat of the disease seems to be less a threat to life itself than a threat to the proper, i.e. gendered enactment of life” (2004, 549). Not only is vulnerability to cancer linked to gendered enactment, so too are the processes by which individuals and the public at large make sense of a cancer diagnosis and recover from this disease. Gayle Sulik argues that this emphasis on the binary gender system is used in the media “to recast the uncertainty of illness into something more manageable and valued” (2011, 74). In other words, because gender is so salient in social life generally and in the experience of breast and testicular cancers specifically, awareness campaigns and celebrity spokespeople rely on masculinity and femininity in their efforts to restore normalcy to those diagnosed with these diseases rather than focusing on these diseases as organic failures. Breast cancer narratives, whether in the media or as told by cisgender women, emphasize the disruption of femininity. Relying on normative conceptions of f­ emininity

Male Breast Cancer in the Public Imagination   223 based in a binary gender system serve to “to recast the uncertainty of illness into something more manageable and valued” (Sulik  2011, 74). As a result, representations of breast cancer tend to highlight normative conceptions of gender identity and the restoration of femininity through bodily practices as a key means by which women reconcile their sense of themselves as women in light of a breast cancer diagnosis. Breast cancer activism positions breasts as “the principal symbol of womanhood, motherhood, and female sexuality” (Sulik 2011, 14–15). These aspects of femininity are thus disrupted by a breast cancer diagnosis. Recovering from the disease then includes the recovery of femininity symbolized by breasts. Laura K. Potts’s (2000) study of autobiographical writings of women with breast cancer notes that women make sense of their experience by turning to mainstream conceptions of feminine beauty. Julia Ericksen’s interview study (emerging from her own experience of breast cancer) notes that most women with breast cancer view the “disease as an attack on her identity as a woman” (2008, 159). This was the case because the breast is crucial to womanhood. Ericksen writes, “No matter how they responded to breast cancer diagnosis or how much authority they gave doctors, women found the reality of a deformed or absent breast traumatic” (2008, 156). This perception of disruption combined with fears about mortality is central to Dorothy Broom’s understanding of breast cancer. Broom argues that not only is the fear of death and disease a central frame for the experience of breast cancer, but also that fears about sexuality and femininity shape the experience, decision-making processes, and narratives told about breast cancer. Broom identifies four discourses common to the breast cancer experience: morbid fear of death and disability, infiltrating destruction from within, femininity deranged, and the destruction of heterosexual availability. Research on women’s experiences of breast cancer tends to affirm hegemonic notions of femininity. Mimi Schippers’s theoretical approach to hegemonic femininity is a response to, and extension of, the concept of hegemonic masculinity. Central to conceptualizations of hegemonic masculinity and hegemonic femininity is the role of relationality between and among various masculinities and femininities. As both R. W. Connell and Schippers make clear, masculinities and femininities are not synonymous with men and women. Rather, masculinities and femininities are social locations and practices that are embodied by individuals. Schippers argues that hegemonic femininity “consists of the characteristics defined as womanly that establish and legitimate a hierarchical and complementary relationship to hegemonic masculinity and that, by doing so, guarantee the dominant position of men and the subordination of women” (Schippers 2007, 94, emphasis in original). The brief discussion of dominant narratives of breast cancer in this section indicates the pervasiveness of hegemonic femininity in framing breast cancer. Contrasting this framing with narratives of the presentation of this disease in men provides an empirical context for examining the relationality of hegemonic femininity and hegemonic masculinity as well as providing an opportunity to explore the ways in which men can be ­complicit in perpetuating hegemonic femininity. Focusing on public discourse about men with breast cancer also opens what Catherine Connell (2010) terms “collective

224   Piper Sledge c­ ontestation of gendered inequality” because representations of men with breast cancer require a process of making sense of a disconnect between our assumptions about breast cancer, the bodies in which it occurs, and the knowledge required to prevent, detect, and treat the disease.

Hegemonic Masculinity, Bodies, and Health Hegemonic masculinity is a concept that sets out to explain the relations between dominant ideas about masculinity, femininity, and subordinate masculinities (Connell 1987). Importantly, hegemonic masculinity exposes the deeply entrenched relationship between a cultural ideal about what masculinity is and institutional power which serves to maintain a hierarchical gender order. Although not specifically addressed in Connell’s work on hegemonic masculinity, she asserts in other work that the body is essential to the social practices that uphold or challenge gender structures. Her agentic approach to the body stresses that the social world and bodily practices are mutually constitutive (2005, 64). The idealized expectations of the body embedded within hegemonic masculinity shape how individuals perceive their bodies and, in the case of cancer, experience their disease. Moss E. Norman argues that through hegemonic masculinity men are under pressure to “both achieve culturally privileged bodies at the same time that they are interpellated to maintain a functional, aloof, and distanced relation to their bodies” (2011, 432). One of the key sites for reproducing hegemonic masculinity and particularly messages about the embodiment of hegemonic masculinity is through the media. According to Carrigan, Connell, and Lee, “hegemony means persuasion, and one of its important sites is likely to be the commercial mass media” (1985, 594). Rosalind Gill, Karen Henwood, and Carl McLean also attend to media messages, arguing that normative masculinity is increasingly the subject of “a new kind of representational practice in mainstream popular culture” (Gill et al. 2005, 38, emphasis in original). Individuals commonly turn to the media, and particularly the Internet, after a breast cancer diagnosis (Eysenbach  2003; Pautler et al.  2001; Sutterlund, McCaul, and Sandgren 2003; Tang and Ng 2006; van de Poll-Franse and van Eenbergen 2008; Ziebland et al. 2004). Given that the bodies of men are increasingly visible in media culture, the various shifts in media representations can indicate the ways in which hegemonic masculinity is challenged, contested, and ultimately changed. Media representations of breast cancer in men serve as a place to identify “new strategies in gender relations and new configurations of hegemonic masculinity” (Messerschmidt 2012, 67) precisely because the normative expectations of hegemonic femininity and hegemonic masculinity come into direct contact through the bodies of men diagnosed with the disease.

Male Breast Cancer in the Public Imagination   225

Methods This chapter grew out of a larger narrative study on breast and gynecological cancers in which I argue that medical interactions reproduce and legitimate cultural ideologies of gender through patient bodies while patients both resist and rely on gender ideologies to make sense of their treatment decisions and medical care (Sledge forthcoming). For this project, I interviewed fifty-seven individuals whose bodies and gender identities don’t match the medical and social expectations for gynecological and breast cancer care: transgender men who seek out preventive gynecological care, cisgender men diagnosed with breast cancer, and cisgender women diagnosed with breast cancer or BRCA mutations who then choose prophylactic bilateral mastectomies. Interview participants consistently voiced their unsolicited opinions about the feminization of breast cancer coverage in the media. The cisgender men with breast cancer I interviewed described a difficult relationship with the “Pink Culture” of breast cancer and the ways in which men were typically left out of the public narratives. Trans and cis men described experiences of cancer care that left them feeling out of place in medical spaces and interactions designed to support women who fit into particular normative categories of feminine embodiment. The similarities and differences in their experiences combined with the continual critiques of breast cancer culture by cis men led me to explore the public narratives about these two groups of men. As the incidence of breast cancer in cisgender men rises and transgender men become more publicly visible, new activist groups are calling for attention to be paid to these experiences. Because cisgender men in my research unequivocally expressed concern about being left out of the story of breast cancer so entrenched in the public imagination and the importance of celebrities to raising awareness about health issues in general and cancer in particular, I began collecting publicly available stories about the only two celebrity male breast cancer survivors, Richard Roundtree and Peter Criss. Celebrities are constantly in the media for personal and professional reasons. As ideal types, the ways these individuals are represented in the news media speaks to the social meanings attached to gender in social life more generally (Rahman 2004). Celebrity spokespeople are particularly effective when they speak publicly about their experiences with cancer. Transgender men have no such celebrity role models to raise awareness and public interest. For the purposes of comparison, I extended my Internet search to include blogs and public health websites to gain a broader range of representations of breast cancer in men.3 I initially selected seven articles about Peter Criss and Richard Roundtree for analysis. These articles represented major news outlets (such as the New York Times, USA Today, the LA Times, and transcripts from major television news networks). Although a simple Google search of either Roundtree or Criss in connection with breast cancer yields far more results than this, the majority repeat the same information as it was generated by outlets such as the Associated Press. The seven articles selected are unique articles and interviews rather than recycled stories.

226   Piper Sledge Famous for his portrayals of “Shaft,” Roundtree represented a hypermasculinity in the 1970s that drew on stereotypes of black male heterosexuality. Shaft is described as “the womanizing, leather clad, maverick P.I. [who] was a symbol of hard-edged masculinity for a generation” (Shipp 2009). As a founding member of the band KISS, Criss was also an icon of rebellious and youthful hypermasculinity. An early article in Rolling Stone describes the band as “four guys who have stepped out of their mundane bodies altogether and simultaneously wallow in those disgusting urges your parents would rather forget. It is pagan religion for adolescents” (Young 2010). These men were both paragons of masculinity that embraced some aspects of hegemonic masculinity while challenging others by virtue of race (Roundtree) and through the use of makeup and costumes (Criss). In order to identify common themes in the media and individual portrayals of male breast cancer, I conducted a general Internet search to identify additional news stories and websites that any man searching for information on male breast cancer would likely encounter. For this reason, I avoided academic search tools such as LexisNexis that are commonly used in media research. I examined two popular online forums for male breast cancer (breastcancer.org and cancercompass.com), the blogs of seven men with breast cancer, and articles written by men with breast cancer for news websites such as The Huffington Post and Mother Jones. When combined with the popular media stories of male breast cancer, these additional online sources represent the constellation of narrative tools men might use to understand their disease and show the ways in which hegemonic masculinity is reinforced and contested in the context of breast cancer. While the results of my search on breast cancer in cisgender men were small, basic Internet searching using a popular search engine yielded even fewer results for trans men with cancer. The coverage of breast cancer among transgender men in the mass media (i.e., websites for major news networks like NBC or The New York Times) typically told the stories of transgender men who were diagnosed with breast cancer and who had not undergone double mastectomy as part of their transition process. In addition to telling their stories, Internet stories about these men tend to emphasize the general discrimination against trans patients within the medical community. Three major news media outlets each published a single story about breast cancer in transgender men: The New York Times, NBC, and Newsweek. Eli Oberman’s story was featured in The New York Times. Jay Kallio was the subject of the Newsweek story. An anonymous man, SK, was the center of the NBC article. Aside from these three human interest stories, the other websites are public health organizations geared toward transgender individuals (Fenway Health and the University of California–San Francisco Center for Excellence for Transgender Health). Eli Oberman’s story was also the subject of a page on the FORCE (Facing Our Risk of Cancer Empowered) website. This website is geared toward families with high likelihood of hereditary breast and gynecological cancers. Given the lack of information available to the public and the fact that these websites highlight the levels of discrimination faced by transgender individuals in health care,

Male Breast Cancer in the Public Imagination   227 I also turned to the medical literature to determine comparative levels of discussion of breast cancer in cisgender and transgender men. In the New England Journal of Medicine (NEJM), I searched the terms men and breast cancer. This generated 896 results. This is a false number, however; often the articles compared breast cancer in women with prostate cancer in men, thus providing an inflated number of results. In the first 200 results, sorted by relevance, 21 were actually focused on breast cancer in men. When I changed the search term to male breast cancer, I received 25 results from 1980 to 2016. In contrast, searching transgender and breast cancer in the NEJM yielded 2 results; a case study of a transgender woman (Gooren  2011) and a book review (Gornick 2007). A search of transgender breast cancer yielded 0 results. The NEJM has the highest impact rating among medical research journals. One case study of breast cancer in a transgender man was published by the journal Breast Cancer (Katayama et al. 2016). Katayama et al. claim that only one other case study exists and cite three articles concerning breast cancer in transgender people. In short, if you are a cisgender man diagnosed with breast cancer, it may seem that there is very little available information. If you are a transgender man diagnosed with breast cancer, there is almost nothing to guide you or your physician. My overall analytic process is reflective of inductive qualitative document analysis, as described by Altheide et al. (2013). In this method, the researcher employs a flexible approach to data with “an emphasis on discovery and description, including searching for contexts, underlying meanings, patterns, and processes” (Altheide et al. 2013, 128). During multiple readings of each source, I incorporated methods from both conventional and directed qualitative content analysis. In my initial reading of Internet sites, I focused on the latent and emergent themes in the various data sources along with the relationships among these themes. I then used this first round of analysis to return to the literature on hegemonic masculinity and doing gender in order to further explore the potential implications of these media sources for gendered embodiment (Hsieh and Shannon 2005). Emergent themes included explicit mentions of masculinity or femininity (i.e., phrases like “macho” and “tough guy”). Although sexuality is implicated in the overall discourse on breast cancer, I focus primarily on gender in this chapter because media representations of male breast cancer remain relatively silent on the matter of sexuality.

Results Although limited, representations of male breast cancer tend to incorporate three key narratives: (1) the disruptive nature of male breast cancer, (2) the reassertion or reclaiming of embodied masculinity, and (3) the creation of some discursive distance from norms of hegemonic masculinity due to the implicit connection between hegemonic masculinity and poor health. These narratives set men apart from the hyperfemininity

228   Piper Sledge present in most breast cancer discourse while reaffirming normative ideologies of masculine embodiment.

Embodied Gender Disruption Contemporary masculinity requires increased attention to the body, yet this attention includes a paradox when it comes to health. Normative masculinity can include a concern for style and body composition (i.e., the desire to build up muscle), yet health is still cast in the literature as somewhat at odds with normative masculinity and even pathologized as a health risk (Rosenfeld and Faircloth 2006, 1). The connection between hegemonic masculinity, health risks, and adverse health outcomes is a common theme in masculinities scholarship (see Courtenay 2000; Doucleff 2013; Oliffe 2009; Stibbe 2004; Watson  2000). Hegemonic masculinity is, in part, about invincibility and strength. Much of the public framing of men with breast cancer works to solidify the norms of hegemonic masculinity while also incorporating a concern for health that has previously appeared firmly entrenched under the normative limits of femininity. One discursive response to the threat of gender disruption presented by male breast cancer is to reinforce the idea that men with breast cancer remain highly masculine despite their diagnosis. Media coverage of Richard Roundtree’s experience attends to the possibility of gender disruption resulting from breast cancer. Roundtree tells interviewers that he “thought [the doctor] was questioning my manhood because women die from this, not men” (Roundtree  2009). As a result of this physical threat to his masculinity, initially Roundtree chose to hide his diagnosis (Gammon  2007). As an actor, Roundtree depended on the visibility of his body and his ability to embody masculinity for his livelihood. In discussing his experiences with cancer, Roundtree was candid about a particular scene for a television show in which he was supposed to take off his shirt. In an interview, Roundtree explained that “you never really get used to having a scar . . . if it necessitates me taking off my shirt, it’s pretty daunting to deal with” (Roundtree 2009). In this case, the scars resulting from mastectomy were a visible marker that Roundtree thought would disrupt his ability to be perceived as a hypermasculine character. While it’s unclear if the scar disrupted Roundtree’s identity, it is apparent that the scars led Roundtree to believe that the perceptions of others would be. In a comment on a male breast cancer forum, 1NippledBandit shares Roundtree’s experience of breast cancer as disrupting gender. He writes, “Any cancer diagnosis can be overwhelming but a breast cancer diagnosis in a man can also be confusing. I was in shock for a few weeks after being diagnosed. I was only 37 and had no idea that men could get this ‘womans’ [sic] disease. It felt very de-masculating [sic]!” (1NippledBandit  2012). This emasculinization underpins the general silence about men with breast cancer. Shame and embarrassment can prevent a man from seeing a doctor or even talking about a concerning lump with close friends and family. One blogger and male breast cancer advocate tries to explain the fact that he

Male Breast Cancer in the Public Imagination   229 avoided s­ eeing a doctor or telling his wife about his concerns for 6 months: “Being a man in his mid-40s probably makes it even easier to ignore. I mean, what are the odds? . . . Then as a guy, you also feel slightly awkward about this area of your body. Let's just be honest—it is not the kind of cancer men have. We have testicular cancer, prostate cancer, and the others” (Bogler 2012). These comments exemplify the distancing between femininity and masculinity that is essential to hegemonic masculinity. By reducing this distance, a breast cancer diagnosis in a man has the potential to disrupt a fundamental component of masculinity. Prior to a breast cancer diagnosis, these men understood themselves to be distinct from women in a number of ways, most important being the physical distinction of women having breasts and men not having breasts. A breast cancer diagnosis fundamentally shakes this most basic distinction between men and women. Given the relationship between hegemonic masculinity and emphasized femininity, to be diagnosed with a disease that occurs in feminized body parts thus triggers a crisis of masculinity. In response, representations of breast cancer in cis men reassert that masculine men can be diagnosed with breast cancer while also creating a new narrative that incorporates breast cancer into the list of possible health risks for men. The potential for gender disruption for men with breast cancer is tied to the reduction of differences in men’s and women’s bodies. Although it is clear that masculinity and femininity can be embodied by individuals of any gender, normative expectations of gender create a false and purportedly natural link between masculinity, men, and particular body parts. The same can be said about femininity, women, and particular body parts. While a breast cancer diagnosis may be disruptive to any individual’s sense of gender identity, male breast cancer as a whole disrupts the taken-for-granted nature of the links between body parts and gender, thus creating a disruption of gendered embodiment in the media. Just as norms of femininity shape the culture of breast cancer activism in response to this disruption, norms of masculinity play into the ways in which male breast cancer is presented in the media. The media narrative suggests that breast cancer causes gender disruption in all individuals, and ideologies of masculinity or femininity, according to the gender identity of the person diagnosed, are the most useful ways in which to help individuals recover from their diagnosis.

Claiming and Asserting Masculinity In the previous section, I showed how ideas about masculine bodies might lead to a disruption of masculinity. However, some public stories of male breast cancer refute the narrative of gender disruption resulting from a breast cancer diagnosis as a man. Journalist Charles Pelkey writes, A lot of people want to know if there is any embarrassment or concern about whether I would be viewed as being less of a man, having been diagnosed with what is generally regarded as a “woman’s cancer.”

230   Piper Sledge Nope. Not one bit. First off, given that modern cancer treatments usually involve the surgical removal of the offending body part, I'm actually pretty happy I didn't get a more “manly” cancer. If I had to give up something, my middle-aged moobs4 are the first thing I’d offer on the sacrificial altar.  (Pelkey 2012)

Here, there is no possibility of gender disruption from breast cancer because aging has already diminished Pelkey’s embodiment of masculine ideals. While breast cancer is not threatening, “moobs” are. That is, the physical changes that can occur as part of the aging process are the real threat of emasculation. By removing breast tissue, the treatment for breast cancer is recast as reinforcing masculinity rather than threating it. Similarly, the prolific forum commenter 1NippledBandit, attempted to lift the morale of a man newly diagnosed by writing, “[I] define all other males as feminine because they have two mamory [sic] glands. By default, I am more manly than 99% of the men out there” (1NippledBandit  2013). Here Pelkey and 1NippledBandit used hegemonic masculinity to make sense of their diagnosis and to distance themselves from women in general and women with breast cancer more specifically. Sacrificing one’s moobs renders one more masculine than other men or at least allows one to retain a connection to hegemonic masculinity because this sacrifice prevents the further feminine encroachment that occurs in middle age and is tangible in the growth of moobs. Public commentary on transmen diagnosed with breast cancer follows this narrative of reinforcing the individual’s masculinity through cancer treatment. For both Eli Oberman and Jay Kallio, a breast cancer diagnosis opened the possibility for the removal of breasts that for Oberman wasn’t desired and for Kallio had been financially out of reach. In Oberman’s case, media coverage of his story reinforced normative assumptions about male bodies; chiefly that they are free of or would prefer to be free of body parts associated with femininity. Although he was not interested in top surgery (the surgical removal of breast tissue), he “felt guilty, able to get free surgery I didn’t want because I had cancer and so many others want it and can’t get it” (Grady 2016). Given that he did not want to remove his breasts, Oberman positioned himself as outside the realm of expectations about normative masculine embodiment. This distance from hegemonic norms of gendered embodiment confused Oberman’s physicians. His physicians recommended an oophorectomy (the removal of the ovaries) in order to counter the production of excess estrogen resulting from testosterone use.5 Oberman reported that one physician told him that “[removing the ovaries is] a slam dunk for someone like you, taking away all your female parts. . . . We thought you’d eat that up. A transgender gift” (Grady 2016). This association of breasts and ovaries with gender as well as the assumption that an individual would not want to have a body with nonnormative parts reiterates the physical embodiment of normative gender identities. Ovaries are female and are thus feminizing. An appropriately masculine man should be happy to be rid of these parts. This is exactly the type of narrative that is supported by the representation of cis men with breast cancer in the media. Oberman’s disinterest in both top surgery and oophorectomy suggests that gender identity cannot be reduced to the presence or lack of certain body parts and highlights the ways in which medical

Male Breast Cancer in the Public Imagination   231 professionals draw on norms of masculine embodiment in the provision of health care for male identified patients. While Oberman interacted with physicians who accepted his identity and attempted to use their assumptions about masculine bodies to convince Oberman to pursue particular types of treatment, Kallio’s story shows the limits of this normative gender ideology. In seeking care for breast cancer, he faced physicians who were unable to reconcile his identity as a man with the body they were meant to treat. After being diagnosed, Kallio was told by his physician that the physician had a “real problem with [Kallio’s] transgender status” and wanted to refer him for psychiatric care rather than to treat his breast cancer (Buxton 2015). This is not an experience that is unique to trans men. In my research with individuals whose choices about their bodies trouble the medical protocols for treating breast cancer, some cisgender women who choose to forego breast reconstruction report similar experiences with their physicians. That is, choosing to embody one’s gender in ways that are counter to normative gender expectations may cause some physicians to question the mental health of their patients and to refuse care (Coutinho-Sledge 2016). In each of these cases, the breakdown or lack of adherence to normative expectations about gender may create a barrier to necessary medical care. If medical practitioners are able to see trans men as men, then they may attempt to use normative expectations of masculine embodiment to convince trans patients to accept certain treatments. This is similar to medical practitioners’ use of masculinity to make cis men more comfortable with a breast cancer diagnosis. These ideologies fail to facilitate treatment and instead create barriers when physicians see trans patients as completely outside the norms of gendered embodiment.

Discursive Distance from Hegemonic Masculinity Masculinity is not uniformly used to open possibilities for the diagnosis and treatment of breast cancer in men. One common narrative in male breast cancer media is one of a rebellious distance from hegemonic masculinity. While Roundtree’s public persona was one that adhered to certain norms of masculinity (i.e., rugged, muscular, normatively heterosexual), Peter Criss’s image as a member of KISS reflects a hybrid masculinity in which elements of subordinated and marginalized masculinities and femininities are incorporated in ways that reinforce systems of power associated with masculinity (Bridges and Pascoe 2014). In speaking out about his experience of breast cancer, Criss implores cisgender men to forget the “macho crap” and pay attention to their bodies (Park 2009). Additionally, he instructs cis men not to “sit around playing Mr. Tough Guy. Don't say ‘It's going to go away’ . . . It’s just important, just go get checked out. It’s not like you’re going to lose your manhood” (Rolling Stone 2009). In these comments, Criss both rejects hegemonic masculinity in his disdain for macho nonsense while also playing on the power of norms of masculinity in shaping men’s lives through his conviction that one’s manhood will not be threatened by diagnostic testing

232   Piper Sledge for breast cancer or the disease itself. Hegemonic masculinity is also recast as incorporating a concern for health and risk prevention. This is an example of drawing on norms of femininity (i.e., paying attention to health) as a masculine behavior. In reconfiguring hegemonic masculinity, media representations at once minimize the distance between male and female bodies (because men can have breasts, too) but reinforce the discursive distance between these bodies by reinforcing normative assumptions about how masculinity is to be embodied.

Conclusion: Alternative Possibilities for Breast Cancer Care Public discourses of cis and trans men with breast cancer share some similarities in their reconstruction of normative assumptions about masculinity and male bodies. While it may seem common sense to link together normative ideologies of gender with breast cancer, Juanne Clarke wonders specifically why “breast, testicular, and prostate cancers [are] portrayed as threats to masculinity, femininity, and sexuality rather than as mechanical and organic failures” (quoted in Casper and Moore 2009, 161). Certainly, these ideologies have proven effective in shifting discourse about these particular diseases provided they are diagnosed in bodies that fit neatly into normative categories of gendered embodiment. However, the strong influence of femininity in both popular and medical discourse on breast cancer pushes men (both trans and cis) to the margins. The framing of breast cancer as a woman’s disease and healing as a process of recovering femininity places clear boundaries on gendered embodiment and on which bodies are visible and treatable within the realm of biomedical cancer knowledge. The respective cases of transgender and cisgender men represented in public discourse reinforce basic assumptions about gendered embodiment yet include a paradox about this embodiment. The bodies of men and the bodies of women are not as disparate as normative expectations of gender would have us believe. Yet these bodies are or should be different enough for men to reject the idea of having breasts, thus turning breast cancer into an opportunity to reinforce one’s claims to masculinity even as public discourse reminds the public that men have breasts, too. The limited representations of trans men suggest the possibility of a departure from these conventional discourses about gender and the body. Not only do some men have breasts, but some don’t necessarily desire to remove them. The inclusion of this ­narrative runs counter to the dominant tale of transgender people being born in the wrong body. Instead, the stories of trans men with breast cancer who do not necessarily desire the removal of their breasts opens up the possibility of multiple gendered embodiments. Additionally, the contrast between the intense masculinization of men with breast cancer and the more mechanistic narrative pushed by health professionals with respect to transgender people and breast cancer stands in direct conversation with Casper and

Male Breast Cancer in the Public Imagination   233 Moore’s question at the start of this section. Casper and Moore suggest that the tendency to focus on gender in these cancers is a product of the fact that the anatomical structures affected by reproductive cancers are markers of gender identity. When these body parts can no longer be seen as uniquely masculine or feminine, discourse about the cancers that affect them requires new narratives. A mechanistic narrative is one way to reduce stigma and discomfort in medical interactions to treat these cancers. Of course, this is not a perfect solution. Dominant structures of gender remain as such as new behaviors are incorporated into acceptable patterns of gendered embodiment and as old narratives are deployed in new ways to raise awareness about the disease. The representations of men with breast cancer in the media illustrate both how hegemonic masculinity can be reinforced in the face of a feminizing influence but also how gendered embodiment can expand to include new practices, patterns, and body parts.

Notes 1. Gender-specific cancer is an umbrella term for gynecological, breast, prostate, and testicular cancers. It is imprecise because breast cancer occurs in both men and women. However, this term does indicate the common assumption that these diseases only occur in specific bodies. As such, it is a useful frame for exploring how some individuals are interpreted as having the wrong body for cancer care. “Gender-specific cancer” is not used in any official context but does appear in several journal articles (for example, see Baker et al.  2009; Mercadante et al. 1997; Orsi et al. 2007). This term is also used in lay information. The website for the Cancer Treatment Centers of America (www.cancercenter.com), an important resource for individuals seeking treatment, also employs this term. 2. Lack of medical awareness of male breast cancer contributes to cis men being diagnoses at later stages of the disease, thus leading to higher mortality rates (Greif et al. 2012). In the case of transgender men, top surgery (i.e., the removal of most of the breast tissue) and testosterone supplementation can lead some men and their physicians to overlook the potential for breast cancer. 3. It should be noted that this study does not include all media representations of male breast cancer. I focus here on news coverage of cis and trans men with breast cancer rather than fictionalized and dramatized narratives because such accounts tend not to be the sort of media that men would turn to in order to gain information about their risks for breast cancer and/or treatment options. Although such examples may turn up in a basic Internet search for male breast cancer, individuals seeking information are much more likely to first see sites linked to news media or health care organizations. Examples of these additional forms of media include season 2 of the HBO series Oz in which a male prison inmate is treated for breast cancer and season 5 of the Bravo reality series Vanderpump Rules in which a central male character has a breast cancer scare. 4. The term “moobs” is shorthand for “man boobs,” a slang phrase used to distinguish breasts on men from breasts on women and serves to demarcate breasts as something only women ought to have. 5. Hormone therapy, including the use of synthetic testosterone, is one form of medical intervention utilized by transgender men to alter their physical appearance. Some breast cancers are estrogen positive, and high estrogen levels promote the growth and spread of these cancers.

234   Piper Sledge

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chapter 14

G ood -L ook i ng M en R equ ir e H a r d Wor k i ng Wom en: Th e L a bor of Consumption i n the Groomi ng I n dustry Kristen Barber

British journalist Mark Simpson coined the term “metrosexual” in 1994 to describe heterosexual men’s consumer investment in fashion and beauty. Popular rhetoric has since circulated around the belief that men are becoming like women in a new way. This belief has served both to strike fear into people concerned with maintaining clear distinctions between men and women and as evidence of growing gender parity. Feminist scholar Susan Bordo (1999), in her book The Male Body, even said, “I never dreamt that ‘equality’ would move in the direction of men worrying more about their looks rather than women worrying less” (14). While highlighting that men are indeed embodied, this idea overlooks men’s long relationships to beauty. It also assumes there is something socially progressive about men who purchase expensive lotions, pay for trendy haircuts, or like slim-fit jeans. Rhetoric is an important unit of analysis for understanding how people are making sense of—and trying to influence—the world around them, but whether men are indeed worrying more about how they look is an empirical question. We have to ask: In what sort of aesthetic-enhancing practices are men participating? What sort of men? Are these practices indeed feminizing for men? And what does all of this say about the role of beauty in shaping contemporary gender relations? This chapter addresses these questions, focusing on high-service men’s salons that specialize in haircuts and hair coloring, body waxing, facials, and manicures and ­pedicures for men. Miliann Kang (2003), who studied Korean nail salons, defined

240   Kristen Barber “high-service body labor” as involving both “physical pampering” and “emotional attentiveness” (827). White, class-privileged women, she found, most often expect this sort of affirming consumer experience. Luxury hotels similarly emphasize a high-serv­ice, personalized experience that guests frequently take for granted (Sherman 2007). High service is not bare-bones. People who prefer or can only afford a quick, cheap haircut at chain salons like Supercuts are also purchasing an experience—one with little formality. But the high-service salon spotlights the great deal of time and money some consumers spend on their appearances. These are places where we assume people indulge their inclinations toward vanity. And so, men at the high-service salons in this study—Adonis and The Executive—reported having to explain to friends and family why it is they invest so much in how they look. Whether they tell friends they go to their salon to interact with the “blonde with the big boobs” or to watch the “ball games,” it is clear these men are not allowed to engage a discourse of vanity. Their complicated relationship to beauty, to their bodies, and to contemporary expectations of privileged masculinity creates a contradiction for men that the salons themselves help to resolve. Just as Kang found in her research, focusing on high-service consumer spaces means that many of the men at Adonis and The Executive were white. It was also clear the salons catered to well-to-do men. This was especially the case at The Executive, whose customers were largely college-educated, white-collar men. This reflects how salons (in addition to barbershops and beauty shops) continue to be segregated along the lines of gender, race, and class. Commercial spaces like these often incorporate symbols and practices that signal they are still for some people and not for others, and Adonis and The Executive are no exception. Barbershops in the United States are dwindling in number,1 but they continue to serve important economic, political, and social functions in communities of color (Harris-Lacewell  2006; Wright II and Calhoun  2001). This is not surprising when considering the history of racial segregation in the United States and the different politics of black, brown, and white bodies. Men of color have a history of “looking good” in ways that repudiate racial and ethnic marginalization. Zoot suits, for example, were an ethnically specific style used by Black and Mexican American men to reject white, middle-class norms of “respectability” (e.g., Alvarez 2009). In contrast, white wealthy men’s legacies with beauty and fashion have been tied to the preservation of their privilege (Entiwstle 2000; Luciano 2001). This was true in seventeenth-century Western Europe, when wealthy men donned silk, lace, and heels, and it is true now. The men’s salons in this study support such ongoing preservation efforts, while also appearing as if they are places for “new”2 progressive men.

Making Beautiful Men While studying men’s beauty consumption, I learned that it is not enough to talk about their purchase of commercial beauty services without regard to the people filing away

Good-Looking Men Require Hard-Working Women   241 their callouses. Doing so only perpetuates researchers’ long-held tendencies to overlook women and women’s work (Harding 1991; Smith 2004). Critical masculinities research all but ignores the role women play in helping men to become “men.” So, when talking about what it takes to shore-up men’s appearances, it is important to focus on women’s labor as stylists, estheticians, nail technicians, massage therapists, and receptionists at Adonis and The Executive; as well as on the work the owners do to make their salons “guy friendly.” There are indeed men in these jobs, with the U.S.  Bureau of Labor Statistics (2018) reporting 209,042 men in cosmetology or other personal appearance work, including barbering,3 and three male stylists in this study of men’s salons. Yet this is a women-dominated occupation; and so social and organizational power is very much reflected in the way women labor on men’s bodies, laugh at their jokes, and reassure clients that they are men not despite but because of their corporeal investments. And while both men and women working in these salons act as confidants that clients may be otherwise missing in their lives, they do so differently. The women also serve as identity resources through which men can engage directly in “girl watching” (Quinn 2002) to project heterosexuality—just in case their presence at a high-service salon raises any eyebrows. All of these practices reveal an informal, masculinizing labor shouldered by beauty providers and shaping the consumer experience at these salons. They aren’t just cutting hair, here; as Roxy, a licensed barber at The Executive, put it: “We’re more than just stylists.” Women at Adonis and The Executive operate by formal and informal organizational rules, as well as by larger cultural recommendations about who privileged white men are and how they should be created at the point of purchase. Men who worked at these salons had to navigate clients’ potential homophobic fears about being groomed by other men; yet it was the women who bore the weight of making men through both physical and emotional pampering. This work captures the role of the body in what I refer to as the labor of consumption. The labor of consumption highlights the work involved in creating consumer environments, experiences, and identities, and consequently in reproducing larger webs of power. It is a symbolic project with social consequences. Much scholarly literature on consumption looks solely at the customer, client, passenger, or guest. But this would be quite an impartial story if it were told from only the men’s perspectives. As mentioned in Styling Masculinity (Barber 2016a): I advocate an approach that we cannot fully understand the social processes of consumption without taking into account labor processes. Consumption and labor emerge in tandem to produce our economic life, social hierarchies, and everyday identities. A focus on consumption that ignores labor reproduces the impression that these things emerge and operate separately.  (17)

Talking about men who “have their nails buffed” evokes the passive voice, making invisible both the work and the worker. This invisibility is political: it overlooks the systematic, multiple inequalities pillaring men’s beauty consumption. Consequently, we

242   Kristen Barber don’t see women laboring on the bodies of men. We don’t see how they cultivate their own bodies to fit organizational images and contemporary style standards so that they can be trusted beauty providers. We don’t see how women’s emotional, physical, and socio-psychological labor makes men feel like men during a pedicure or a facial. And we don’t see how places that seem like havens for liberated bodies and progressive gender relations are in the business of maintaining the status quo.

The Study The data discussed herein come from a larger research project exploring the impact that men’s increasing beauty consumerism (IBIS 2010, 2015) has on the organization of serv­ ice work within the “grooming industry.” Scholarly literature has focused largely on how women beauty workers and women clients interact to reproduce raced and classed gender identities; and so this work aimed to fill an empirical gap while also theorizing shifts in the gender order. This meant talking with clients and salon employees about how they came to Adonis or The Executive, and it meant observing how they negotiated gender expectations and brand efforts in real time. I conducted fifty interviews and spent 9 months collecting ethnographic fieldnotes at the Southern California salons. Talking directly with stylists, clients, nail technicians, and other salon employees, as well as with the salons’ owners, allowed me to gather narratives about why they decided to work in men’s grooming, how they understood their relationships with clients, and how they related to Adonis or The Executive as workplaces that organized their bodies and their interactions with clients. I spent time watching men at The Executive read the newspaper while sticks of wax protruded from their ears and noses, hardening before a stylist ripped away the unwanted hair. And I sat in reception at Adonis, watching clients avoid each other and watching stylists greet their clients. Studying men’s salons was no easy task. This is because studying elites is not easy; people with intersecting social privileges might have a hard time understanding how participating in research will benefit them. And they’re right, it probably won’t. At least not in the same way poor mothers might hope that supporting research might have policy implications that better their lives. Elites also feel entitled to their time and space; and the salons were invested in providing clients a pampered experience that did not include being solicited for research. In an earlier study (see Barber 2008), one salon client told me that this research is “dumb” and that he didn’t see the value in studying men’s relationships to their bodies or to the beauty market. Although Southern California is a cosmetic mecca (with high rates of plastic surgery, plenty of specialty salons for eyebrow threading, for example, and an intense celebrity culture), it was still hard for many of these men to talk about their investment in their appearances. Taken together, these things made it more difficult to solicit and interview salon clients. I turned to studying women and their work, and to including online salon reviews and surveys in the research design (see Hallett and Barber 2013).

Good-Looking Men Require Hard-Working Women   243 It took months to secure the two field sites, with the owner of Adonis granting access as an extension of his familiarity with journalists interested in his salon. Veronica, owner of The Executive, was a proponent of education and research. But neither wanted anyone scaring away their clients with requests for interviews. Veronica eventually allowed me to hand out customer surveys, at the bottom of which men could leave their contact information if they were willing to participate later in an interview. The salons’ employees were happy to talk. It was clear they had a lot to say about working in men’s salons, which they understood people find curious. It merits consideration how much pressure workers might have felt to talk with me, given that I was at their workplace, where being accommodating is part of their jobs. I also experienced corporeal pressure while conducting this research, finding myself cultivating an appearance that matched each salon’s aesthetic (see Gruys and Hutson, 2020 this volume, “The Aesthetic Labor of Ethnographers”). As a woman who does not otherwise put much time into preparing for the day, I found myself anxious to appear stylish, aesthetically competent, and as though I belonged in these spaces. This, as well as being white and a cis gender woman, advantaged me in this research; but it also made me realize that the embodied pressures researchers experience and the effects of these pressures on entrée and data are understudied. My aesthetic efforts helped to legitimize me as intelligible and thus as legitimate in my interactions with the mainly women interviewees. I interviewed all thirty-six employees of the two salons, as well as Veronica, owner of The Executive. Employees were more racially and ethnically diverse than the clients, with two Southeast Asian and one Latin stylist at The Executive, and three Latin employees at Adonis. There were three men, and all but one employee identified as heterosexual. Clients were mostly white and heterosexual, with few exceptions during both the thirteen client interviews and the field observations; but Adonis’ clients were often younger, in their twenties and early thirties, while there were many more men in their fifties at The Executive. This reflected location—Adonis was in a hip beach community, while The Executive was located in a tickytacky county filled with office buildings. Narratives about the marketplace value of beauty services for men were thus more prevalent at The Executive, where khaki-clad clients often came during their lunch breaks.

The Labor of Consumption in Men’s Grooming Introducing Men to Beauty We often think women are clearly embodied—emotional, vain, leaky—while white men are discursively disembodied—rational, stoic, contained (see Crossley  2011). Masculinities scholar Harry Brod claimed that men’s suits reinforce this idea, cutting off

244   Kristen Barber the head at the tie so they become symbolic brains, or “apparatus[es] of the public sphere” (Kirkham 1996, 157). This perspective shapes who we think is most adept at different jobs. White men become ideal political leaders, for example, who are presumably unemotional and unbiased. Women should conversely stay away from decision-making roles. And presumptions about women’s vanity make them “naturally” suited to style clothes and hair. Straight men are not expected and really shouldn’t care about how they look in a society where women (and gay men) are conflated with vanity. Finn, a 32-yearold regular client at The Executive, said that he prefers women stylists because “women know what they’re doin’ a little bit more when it comes to haircuts.” Dan, a 61-year-old client, described men as so oblivious to what looks stylish that women beauty providers might as well be veterinarians, whose patients “can’t tell [them] what the pain is or what he doesn’t like about his hair.” Women working at Adonis and The Executive overwhelmingly appreciated that ­clients saw them as experts. This is because if men turned their trust over to stylists, then they did not have to fight clients on the haircut and could more easily convince clients that men “like them” need manicures to appear trustworthy in the boardroom. “I just love the ones that trust me and say, ‘Ok, yeah, do whatever.’ It just makes it really easy,” said Emily, a 21-year-old stylist at Adonis. At the same time being beauty experts eased serv­ice negotiations and made the women feel appreciated by clients, it also created additional labor for them. The women were responsible for cultivating men’s “cultural capital” (Bourdieu 1984), turning supposedly naïve men into competent beauty consumers, and this took a great deal of work. The women in this research saw themselves as educators who taught men how to navigate the salon. With their help, men learned the ropes of a luxurious, pampering experience often associated with femininity but always associated with class privilege. There were three heterosexual men in this study; two of whom were licensed barbers and one a cosmetologist. None of them talked about having to educate clients on how to navigate the salon experience. The women, however, spoke at length about ushering men into the high-service grooming industry—what one stylist referred to as the “men concept” of beauty. The women acted as cultural mediators who bridged men’s identities as white, heterosexual, and professional class with the potentially feminizing beauty services they purchased at Adonis and The Executive. The women explained that clients are often uncertain of what to do once they walk into the salons, especially for the first time. They recalled stories that showed people have to learn how to be salon clients. One stylist at The Executive laughed while describing a first-time client who did not know what to do with the black smock she gave him at the beginning of the appointment. While smocks wrap around clients’ necks to protect their clothing from bits of falling hair, this client changed out of his clothes completely as if he were putting on a hospital gown. When he emerged from the Locker Room, where men could store their wallets and keys, the stylist hoped that he was still wearing his underwear and quickly led him back to the Locker Room to put on his pants. Corey, a 35-year-old owner-stylist of a small competing salon, shared another story about a client who did not know how to sit at the shampoo bowl:

Good-Looking Men Require Hard-Working Women   245 I had one guy, and he must have been, like, late thirties or forties, and I think he had been going to a Supercuts since time immemorial. When I said, “We’re going to shampoo your hair,” and we went to the back, he actually got on his knees and stuck his head in the bowl. He had never had his hair shampooed, so he didn’t know how you’re supposed to sit at the shampoo bowl. So it was like, “No, no, you’ve got to sit down and you lean back. It’s not like washing your hair in the kitchen sink.”

While these are particularly colorful examples, they show how everyday cultural repertoires are learned. And Casey represents an exception to men stylists taking on the task of acculturation—as the only stylist at his salon and the only gay stylist in my study. He and the women at Adonis and The Executive show that experience goes a long way. It is often the lack of experience in particular spaces, like the football field, and with particular practices, like changing diapers, that make people appear more or less competent at certain tasks. But we often use widespread, existing assumptions about gender dichotomies to frame these competencies as sex linked. This logic justifies the ghettoization of women into unpaid domestic labor and into lower paying, service jobs like beauty work, and men into culturally celebrated professional sports, for example. The heterosexual men frequenting these high-service salons are freed from the pressures of beauty expertise, strengthening their associations with hegemonic, ideal definitions of masculinity (Connell 1995). These ideals rely on the repudiation of femininity and continue to val­or­ ize heterosexuality as dominant in the gender order (Connell 1987); they also reveal the power of rhetoric even when we are presented with contradictions. Stylists teach men the differences between clipper and scissor cuts. Most men are familiar with electric clippers favored by barbershops and wielded by chain store stylists in an effort to get clients in and out of their chairs quickly. At The Executive, women said they used clippers only for “cleaning up necklines.” Scissors are their tool of choice for discerning clients, and the men, they said, pick up on this. Men’s salon clients mentioned this in their online reviews. One man praised his salon for providing “No hack jobs with electric clippers . . . but only scissor.” Another particularly admired “precision scissor cuts”; and a third said: “When I’m paying this kind of money for a haircut, I expect the stylist to actually cut my hair with scissors. Needless to say I won’t be making an appointment with her again.” “Sometimes I’ll pick up my clippers to use them,” Faith, a 29-year-old stylist at Adonis, said, “and [clients will] be like, ‘I don’t want you to use them.’ ” She has assured clients that she is using them solely to even out their necklines. Clients learn that 30-minute scissor cuts provide them with supposedly “superior,” more “stylish” hair, separating them from “grease monkey” mechanics at the barbershop whom they believe don’t care—and don’t need to care—about how they look (see Barber 2008, 471). Not all men can afford to pay $40 for a haircut, let alone the cost of coloring away the gray. And not all men can get away with looking like they care. Bluecollar men, for example, may value calloused, laboring hands as signs of “real” masculinity (see Paap 2006). Clipper cuts are also the tool of choice in Black men’s hair, and so prioritizing scissors reflects the privileging of a largely white clientele and the institutionalization of a racialized corporeal aesthetic.

246   Kristen Barber Part of educating men on “style” involved discouraging them from adopting combovers to hide their thinning hair. Stylists advised men to toss the gel in favor of styling wax and introduced them to pricey lotions, washes, astringents, and exfoliants. The women taught men that not all products are formulated “for men,” and so they shouldn’t be dipping into their wives’ or girlfriends’ face creams and shampoos. Alfred, a 52-year-old client at The Executive, explained: “I understand from Veronica [the salon’s owner] that [women’s salons] don’t put the right—they’re used to mixing the chemicals for a woman’s pH-balance of their hair, where a male is different.” This is just “another thing between women and men that are [sic] different,” he said. Such biologized language sets men and women up as distinctly, inherently different. It seems intuitive because we can see corporeal differences. Evolutionary biologist Anne Fausto-Sterling (2000), however, reminds us that while there are biological realities, we use existing social frameworks to create and emphasize differences along neat lines. Taken together, for example, genes, organs, and hormones are more diverse than a twosex system allows. But instead of expanding our conceptions of sex and gender, we throw out variation as “abnormal.” And our obsession with such biological explanations of difference allows marketers to convince people they have unique needs that require a unique consumer answer. Men’s skin is particularly oily, they might say, and so men need a special lotion. Or men get sweatier than women—thus men need special “extra strength” deodorant. And while women athletes are growing in number, the adage that men are naturally more athletic supports The Executive’s efforts to sell men hair product as “sports cream.” “You can wear it while you’re playing basketball,” Veronica explained. There isn’t any real science behind the idea that men need special hair dye. But packaging products as “for men” and “for women” allows manufacturers and retailers to double-dip, creating demand for more products within heterosexually coupled households. Gendering products means that men might accept the idea that their “face scrub” is indeed different from their girlfriends’ exfoliant, so that there should be two bottles of this product in the bathroom cabinet. This repackaging—or regendering—of products supported a 2.9 percent growth rate in men’s product sales to $6.3 billion from the years 2014 to 2015 (Euromonitor International 2015). Packaging products in masculine and masculinizing ways, so as to create men at the point of purchase, depends a great deal on language (also see Barber and Bridges 2017). At Adonis and The Executive, this is no exception. Manicures were labeled “MANicures” at Adonis and “hand detailing” at The Executive—as if men were tuning up their bodies like cars. The salons did not even refer to themselves as “salons.” Vicky, a new hire at The Executive, told me: “Veronica calls it a ‘grooming lounge,’ ” so “it’s not really a ‘salon.’ ” Many employees referred to The Executive as a “salon” during our interviews, anyway; but they were careful not to do this while interacting with clients. They thought “beauty” and “salon” might conjure up for men the presumably intimidating image of a place with rows of women sitting under hairdryers. Veronica required her employees to use what she referred to as “masculine verbiage.” “My staff is trained in how to speak to a man,” she told me. Stylists were supposed to call “bangs” simply “the front.” “Fringe” was “layers.” When I asked her why she

Good-Looking Men Require Hard-Working Women   247 i­nstitutionalized this language, Veronica explained: “Using terms like ‘linear,’ keeping it masculine and referencing—like a ‘neckline’ for us, we have three: ‘tapered,’ ‘deconstructed,’ and ‘deemphasized.’ So things like that, so men go, ‘Oh, yeah, I know what that word means.’ It’s like speaking their language.” In addition to drawing from gendered stereotypes about men’s propensity for engineering, stylists’ use of “linear” and “tapered” taught men how to think about this consumer practice as masculine. They provided men language with which they could frame their salon-going to skeptical family and friends. This language does its job, which is to reinforce the idea that men and women are so inherently different that men need spaces like Adonis and The Executive—and that nothing about their experiences in these spaces make them like women. Instead, they are engaging in practices appropriate for white, educated men.

Caring for Men The stereotype of the ditzy, bubblegum-smacking, gossipy beautician proliferates in the media; and the women interviewed for this study were aware others might judge them by this image. Pushing back against the idea that hair work is for brainless “bimbos,” they explained their therapeutic work. In Ursula Sharma and Paula Black’s (2001) research on “beauty therapists,” they found that making clients feel better was more important to workers than making clients look better. This is not the case at Adonis and The Executive, where women saw shaping men’s hair and clipping men’s cuticles as key to their clients’ flannel-suited success. But they didn’t want to be seen as “simply” cosmetologists, either. Instead, they emphasized their roles as emotional pillars to clients, likening themselves to “cheap therapists”—or what 2008 Shear Genius reality show contestant, Janine, called “hairapists.” Isabel, a 31-year-old stylist at The Executive, is proud to be a sort-of “psychologist” for her clients: [A] lot of people, they don’t respect our job or our title, because it’s a hairdresser, they think, “OK, they cannot use their brain more than that.” So they don’t respect too much about being a stylist. But they don’t think, like, every time that they sit in the chair, you start being a psychologist. . . . as soon as they sit in the chair, most of the people, they start talking about their problems.

Isabel and others highlighted the “emotional labor” (Hochschild 1983) they did for their clients; and instead of only creating happy consumers, the salon employees used emotional labor to support their identities as professionals. This is gendered work, though. Since hegemonic ideologies say that women are instinctively more nurturing than men, they become unequally responsible for emotionally supporting the people in their lives, and corporations trade on this expectation to fatten their bottom lines. Behaving “like a girl” means demonstrating care as a natural propensity, so that this sort of commercialization goes unrecognized and thus uncompensated. At the men’s salons

248   Kristen Barber in this study, caring for clients was indeed part of women’s work in a way that it wasn’t for the men who cut hair; and it meant acting as confidants who boost men’s masculine egos. Clients complained to the women hairstylist, estheticians, nail technicians, and massage therapists about personal troubles. Sometimes they even cried. Trish, the 29-year-old massage therapist at Adonis, said: “I’ve had people, like, cry in there, where it’s really obvious, like, ‘OK,’ you have to tell them everything’s gonna be fine.” At The Executive, some stylists described themselves as the “other women” in their clients’ lives—women to whom men could turn for judgment-free emotional support. Trish explained: “The guys will come in with issues that maybe they don’t want to talk to their girlfriends about or their wives. Like, I’m their therapist, mentally and physically.” Masculine “feeling rules” (Hochschild 1983) that instruct men not to care too much, emote too much, or talk too much about their feelings are a “cost” of trying to live up to hegemonic masculinity (see Messner 1997). These costs have real consequences for men in terms of discouraging intimate relationships with others. “Don’t cry.” “Be a man.” “Man up.” These are reprimands for acting too much like a girl or woman. Research on men’s relationships shows these narrow expectations translate into “shoulder-to-shoulder” friendships for men rather than “face-to-face” friendships (Greif 2009, 6). Men can sit shoulder to shoulder yelling at the television during a football game, but it is women, scholar Geoffrey Greif (2009) argues, who are freer to confide in each other. Since homophobia still informs hegemonic masculinity (see Pascoe 2007), men are culturally discouraged from crying on each other’s shoulders. Some research suggests this is changing, especially for so-called millennial men (e.g., Risman 2018). Whether or not this is indeed a larger cultural shift in masculinity, Adonis and The Executive are spaces in which men can rely on women to provide them emotional support without risking their associations with the standards of stoic manhood. In fact, this labor reinforces clients’ masculine privilege by having women do the heavy emotional lifting and hiding men’s emotional needs neatly within private interactions. Masculine feeling rules operate differently for two of the men who cut hair at Adonis and The Executive. Ryan and Randy did not invest in emotional support work but instead built relationships with clients based on a “bro” discourse of sports and heterosexual pursuit. Having overheard Randy’s conversations with some of his clients at The Executive, Bridget, a 41-year-old nail technician, said the men “sit there talking about women they slept with, and these are men with wives. And [they say], ‘What happens in Vegas stays in Vegas.’ ” Randy reportedly nodded along to his clients’ descriptions of sexy dates. Bonding over the mutual sexual objectification of women is key to men’s dominance, and objectifying women, especially as a group, is part of the “problem of masculinity.” As sociologist Sharon Bird (1996) notes in her research on men’s homosocial interactions, individual men join in on belittling women even when they don’t want to because they are afraid of being on the outs with other men. This makes them complicit in a sexist system that privileges them as presumably heterosexual, virile men. Joshua, a 31-year-old barber at Adonis who also worked as a youth minister, described his relationships with clients differently than Ryan and Randy. He told me that he had

Good-Looking Men Require Hard-Working Women   249 become a barber partly to connect with other men, forming what he called “brotherly” bonds. Recognizing that heteromasculine entitlement limits the types of relationships his women colleagues can build with their clients, he explained: “There’s no contingency upon [my relationship with clients]. It’s not where, ‘My hair stylist is this cute girl,’ or whatever.” This freed him up to create close, confidential interactions with regular clients over time. He wanted to care for these men, to provide them with advice, and to hopefully help them mend their relationships with others. On more than one occasion, clients had invited Joshua and his wife to backyard barbeques. Joshua showed that there are subversive possibilities for men to build “face-to-face” relationships in contexts otherwise built around upholding heteromasculine identities, and that men’s investment in corporeal care is an unexpected avenue for developing these relationships. Interpersonal bonds between men also form in the barbershop, but research on the Black barbershop shows these bonds emerge as mentorship relationships and within larger communities rather than in closed interactions (e.g., Harris-Lacewell  2006; Wright II and Calhoun 2001). Men working at Adonis and The Executive also got out of performing masculinizing “ego work” (O’Brien 1994) that provides men with socio-psychological support. When men expressed insecurities around their thinning or graying hair, women working at the salons eased their worries. Isabel told me that “ . . . when the guys are like, ‘Oh, my gray hair,’ it’s like, ‘Oh, no, that’s sexy.’ They start talking about their receding hairline, and you’re complimenting them.” These stylists sometimes drew comparisons between their clients and celebrities, such as People Magazine’s two-time Sexiest Man Alive, George Clooney, who sports salt-and-pepper hair. Beauty brings men’s presumed heterosexuality under suspicion, and so having an attractive woman compliment their appearances helped to make the salon experience heteromasculinizing. Finn explained: “If you tell your friends where you get your hair cut . . . they assume it’s a little bit sideways or maybe you lean that way.” Online reviews noted the “female affirmations” some men received even after they left the salon. “There might be something to this place,” one man wrote. And while heterosexual men may be used to capitalizing on women’s emotional labor in this way, the salon provides all men—gay men included—with an opportunity to associate with heterosexual privilege, even if only momentarily.

Pampering Men Being a cosmetologist or barber means you touch people. It’s part of the job. Barbershop barbers tend to touch less than those working in high-service salons. They often spray down clients’ hair instead of providing deep scalp shampoos and use small brooms instead of their hands to brush off bits of freshly cut hair from clients’ neck. There are rarely complimentary facials; whereas stylists at Adonis rubbed clients’ foreheads with exfoliant and draped steaming towels over their faces. Barbershop manicures for wellheeled men have largely gone by the wayside (Barlow 1996; Jones 1999), but at Adonis and

250   Kristen Barber The Executive, manicures and pedicures came with creamed hand and foot massages. And while you might be able to get a hot, straight razor shave at some new hipster barbershops,4 these shaves are reminiscent of a nostalgic—not a progressive—masculinity. This sort of touch is supposed to pamper clients. However, because pampering is culturally conflated with women and “women’s salons”—and with “feminine” bodily practices—the stylists in my study found themselves introducing sometimes uncomfortable men to commercial caressing. “You’re basically in charge of making [clients] feel really good when they leave,” Roxy said. Part of making clients “feel really good” involved shoring up their masculinity so they could enjoy the complimentary facial, pedicure, or scalp massage. Cosmetology is a women-dominated occupation, and these men’s salons took advantage of this; they hired attractive, heterofeminine-appearing women with long hair and who wore makeup and high-heeled shoes (see Barber  2016b). These women were allowed to really touch men, to “get in there and do the job,” as one stylist described it. After all, men are supposed to want to be caressed by heterosexual, conventionally attractive women, and they can meet this expectation at Adonis and The Executive. These women saw themselves as fulfilling a “human need” for touch that men are especially likely to miss out on. Homophobia operates to suppress touch between men, and the heterosexual imaginary, whereby heterosexuality is assumed (Ingraham 1994), suppresses public touch between men and women. Elsie, a 23-year-old stylist at Adonis, explained: “This is the only place, the beauty industry, that you actually get to be touched and relaxed and pampered. . . . As humans, we don’t touch each other enough.” Pampering provides a “healing” touch, Connie told me. And Gabrielle, a 31-year-old stylist at Adonis, was adamant that her clients wanted to be touched, or “healed,” by a woman: “They’re like, ‘I just need your touch. I’m single. I need a woman to touch me.’ ” She went on: “ ‘I just need a woman to touch my hair. Play with it a little bit, relax my skull . . .’ ” Gabrielle and others framed heterosexual men’s desires to be touched by women as a want and a need, but men are not really allowed to be touched by just anyone. This is because like masculine feeling rules that limit men’s abilities to get emotionally close to each other, masculine touching rules restrict men’s physical interactions. Touching rules are culturally agreed-upon norms that tell us who can touch who, how so, under what conditions, and how people are supposed to feel about this touch. Masculine touching rules rooted in homophobia make it difficult for heterosexual men to relax into a hug with another man. This shaped men’s interactions with each other at Adonis. Ryan, for example, greeted his clients with a high-five or a “man hug,” where he slapped hands with a client and yanked him in for a one-handed pat on the back while keeping their arms between them so their chests didn’t touch. “Hi, dude!” he would say. Women never greeted their clients with a high-five and rarely with a handshake. Instead, they hugged their clients, an informal expectation that 30-year-old new hire, Ruth, was uncomfortable with at The Executive. “Veronica does encourage that we hug our clients,” she said. “I have a big problem with that. But that’s only because I feel that’s outside my job duties . . .” While many of the women described themselves as “naturally touchy,” Ruth’s comments suggested there was an acculturation period during which the

Good-Looking Men Require Hard-Working Women   251 women came to accept this part of the job. They had to learn to make their bodies available to men. In his work on professional football players, sociologist Michael A. Messner (1992) showed that male athletes are allowed to get naked in front of each other and to even slap each other on the buttocks, but only because they do so within the context of a historically masculine institution: sports. Sports is so heterosexualizing, he said, that men’s association with football crowns them straight until proven otherwise, even serving as a sort of closet for gay athletes. These men meet expectations for aggressive, competitive, hegemonic masculinity. The salon is not a masculine institution that provides men de facto protection from the feminization of intimate touch. As a result, Ryan, Randy, and Joshua got out of having to pamper clients—they could skip or shorten the shampoo, for example. Noah, a 34-year-old client at Adonis, admitted that he “wouldn’t be as relaxed” having his hair shampooed by a man. “I don’t think it’s an overly sexual thing,” he said, “but there’s definitely a sexual element to it.” For this reason, he chose women stylists. Men who wanted clients had to play by masculine touching rules. They could rarely touch men for the amount of time necessary for it to be considered pampering. The women beauty providers, though, had to sink their nails deep into men’s hair and keep quiet when clients moaned in pleasure, making the stylists uncomfortable. The women explained that to make men comfortable with pampering, they had to appear as confident touchers. Clients should not be self-conscious about being touched, they said. Vicky was adamant that how beauty providers touch their clients can “make or break” the consumer experience. Even when a client has greasy hair, women can’t hesitate to touch them. Doing so would reveal the touch is indeed unnatural, an occupational requirement rather than women’s innate, feminine inclination. Men want the women to want to touch them, Maribel, a 20-year-old stylist at Adonis, suggested. “If you just did a quick shampoo, whatever, it shows that you don’t care. But if you’re giving an extra minute or two to give a massage, they’re like, ‘OK, this person isn’t rushing me out of here. They want to take their time.’ ” In this way, the work involved in pampering men is supposed to be invisible—nonwork that women want to do. “Women,” Corey said, “[are] used to being pampered. Men are not.” While men might go to a women’s salon to access elaborate, pleasurable shampoos, Corey believed men also feel like and are treated by stylists as “second-class citizens” in these places. Contemporary men’s salons, like his own, are designed for heterosexual white-collar men, offering clients the chance to be “pampered like women” while also being “catered to” as men, he said. Part of being “catered to” as a man at Adonis and The Executive meant having women continually normalize the discomfort of beauty. This became clear when women described having to soothe men’s masculine egos during the sometimes painful and potentially feminizing touch accompanying services. Jackie, the sole esthetician at Adonis, turned men’s expressions of pain into nonissues during waxing sessions. Clients sometimes screamed when she applied hot wax and later ripped the hair from their thighs. She regularly assured them: “ ‘Anyone would be hurt getting waxed.’ It’s not so much, ‘Oh, you’re a guy, it shouldn’t hurt. It should tickle.’ ” In a private room at the back of the salon, she helped clients reimagine masculine feeling rules in a

252   Kristen Barber way that allowed for both pampering and pain, that reassured them their masculine credentials remained intact when they cried out. Pampering distinguishes high-service men’s salons from the more economical barbershop and chain salons. Barbershops, some clients expressed, are for “young boys” who don’t have anyone to impress and for “old men” with little hair. They are for auto mechanics who can go to work with dirt under their fingernails. The pampered, highservice salon experience becomes an avenue to white-collar manhood; these are men who have to persuade their own clients that they are trustworthy financial brokers or architects. The men’s salon feels like “entering the man’s world of primp and pampering and . . . leaving the boyish haircut comfort zone behind,” one online reviewer said. In other words, the “right” kind of men can indeed be made at the salon.

Conclusion Adonis and The Executive are places in which we cannot be blamed for thinking something progressive is happening. If heterosexual men are going to salons to look stylish and beauty has been linked to the reproduction of femininity, then there must be something equalizing about men’s presence in these spaces. The line between masculinity and femininity, which is integral to a hierarchical gender order, is being blurred. This research shows that this is not the case; not at high-service men’s salons, anyway, which offer the appearance of a seismic shift in masculinity but actually repackage gender inequality. Salons like these are built on the notion that especially white well-to-do men will buy into beauty if it shores up professional class heterosexual masculinity—if it reinforces the experiences of multiple privileges with which these men are well acquainted. In this way, this boots-on-the-ground research suggests we should be careful about popular rhetoric that too easily assuages feminist angst about continuing inequalities. Claims that gender equality is reflected in some men’s beauty consumerism became suspect in this study the moment I refused to engage the passive voice. I realized early on the importance of studying women to better understand the politics of men’s bodies. After all, beautifying men is largely women’s work: the work of personal care workers as well as mothers, wives, and girlfriends. My own mother-in-law recently told me that I needed to tidy up my spouse’s dark, thick eyebrows. As a woman, I was supposed to be responsible for his corporeality, and I was supposed to both care about his eyebrows and be skilled at trimming them—the expert. Whether women trim men’s eyebrows at home or in the salon, doing so is the reproductive labor5 upon which heteromasculine entitlement is built. So, to answer the question: What does it take to make men beautiful? It takes women—it takes conventionally feminine, presumably heterosexual women who have long served as pillars of men’s power, who are culturally responsible for men’s ­well-being, and who are culturally required to be available to men. And it takes organizations capitalizing on a whole lot of informal, masculinizing labor from women.

Good-Looking Men Require Hard-Working Women   253 Clients of Adonis and The Executive are not progressive “new men” committed to undermining unequal gender arrangements between men and women. And Adonis and The Executive are not subversive spaces. In fact, the “new man” is a problematic concept because it emphasizes fleeting displays of gender while overlooking shifts in structural positions of power. Men doing the dishes or dyeing away the gray are not necessarily unsettling existing social hierarchies. The meaning people give to these practices and the social arrangements making them possible are important in determining their progressive potential. In fact, conceptions of the “new man” are more ideological than actual (also see Bridges and Pascoe 2014; Demetriou 2001). This research is a cautionary story urging us to avoid assuming that shifts in what men do or how they look automatically diminish (or exaggerate) hierarchies. Instead, we have to consider when rhetoric serves as tool of domination—redirecting feminist critique to blue-collar men as the real problems—and when exactly it reflects tangible shifts toward more egalitarian relationships.

Notes 1. According to 2016 Census data, there was a 23 percent decrease in barbershops in the United States from 1992 to 2012, with a slight uptick in 2013. 2. See Hondagneu-Sotelo and Messner (1994) for more on the “new man.” 3. Women make up 92.1 percent of 834,000 “hairdressers, hairstylists, and cosmetologists,” as  well as 83.6 percent of 449,000 “miscellaneous personal appearance workers” and 21 ­percent of 132,000 barbers. 4. Journalists argue barbershops are making a comeback in gentrifying urban neighborhoods. See Thomas Page McBee’s 2015 Playboy article, “What the Barbershop Renaissance Says about Men,” and Sam Harnett’s  2018 piece, “Is Masculine Anxiety Fueling the Rise of Nostalgic Barbershops?,” KQED San Francisco Public Radio. 5. Socialist feminists highlighted women’s reproductive labor as key to upholding capitalism, whereby they help to create new workers, work for lower wages, stabilize the economy as consumers, and serve patriarchal structures as wives and mothers (see Eisenstein  1990; Hartmann 1976; Smith 2004).

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Good-Looking Men Require Hard-Working Women   255 IBISWorld. February 2015. Hair Salons in the US—IBISWorld Industry Report 0D4410. Los Angeles. Ingraham, Chrys. 1994. “The Heterosexual Imaginary: Feminist Sociology and Theories on Gender.” Sociological Theory 12, no. 2: 203–219. Jones, Christian R. 1999. Barbershop: History and Antiques. Atglen, PA: Schiffer. Kang, Miliann. 2003. “The Managed Hand: The Commercialization of Bodies and Emotions in Korean Immigrant-Owned Nail Salons.” Gender and Society 17: 820–839. Kirkham, Pat. 1996. The Gendered Object. Manchester, UK: Manchester University Press. Luciano, Lynne. 2001. Looking Good: Male Body Image in Modern America. New York: Hill and Wang. McBee, Thomas Page. 2015. “What the Barbershop Renaissance Says About Men.” Playboy, December. Messner, Michael. A. 1992. Power at Play: Sports and the Problem of Masculinity. Boston: Beacon Press. Messner, Michael. A. 1997. The Politics of Masculinities: Men in Movements. Oxford: AltaMira Press. O’Brien, Martin. 1994. “The Managed Heart Revisited: Health and Social Control.” Sociological Review 42: 393–413. Paap, Kris. 2006. Working Construction: Why White Working Class Men Put Themselves—And the Labor Movement—in Harm’s Way. Ithaca, NY: Cornell University Press. Pascoe, C.  J.  Dude. 2007. Dude, You’re a Fag: Masculinity and Sexuality in High School. Berkeley: University of California Press. Quinn, Beth A. 2002. “Sexual Harassment and Masculinity: The Power and Meaning of ‘Girl Watching’.” Gender & Society 16, no. 3: 386–402. Risman, Barbara. 2018. Where the Millennials Will Take Us: A New Generation Wrestles with the Gender Structure. New York: Oxford University Press. Sharma, Ursula, and Paula Black. 2001. “Look Good, Feel Better: Beauty Therapy as Emotional Labour.” Sociology 35: 913–931. Sherman, Rachel. 2007. Class Acts: Service and Inequality in Luxury Hotels. Berkeley: University of California Press. Simpson, Mark. 1994. “Here Come the Mirror Men: Why the Future Is Metrosexual.” The Independent, November 15. Smith, Dorothy  E. 2004. “Women’s Perspectives as a Radical Critique of Sociology.” In Feminism and Methodology: Social Science Issues, edited by Sandra Harding, 84–96. Bloomington: Indiana University Press. U.S. Census Bureau. 2016. “Statistics of U.S. Businesses.” http://www.census.gov. Wright II, Earl, and Thomas  C.  Calhoun. 2001. “From the Common Thug to the Local Businessman: An Exploration into an Urban African American Barbershop.” Deviant Behavior: An Interdisciplinary Journal 22: 267–288.

chapter 15

Feedi ng a n d Fasti ng Bodies Jaita Talukdar

Food is a gendered, social institution. After all, gender is implicated in social processes that underlie the production, distribution, and consumption of food, as food moves from the farm to the table. It is women across cultural contexts in their social roles as homemakers and caretakers of their families and communities that are responsible for food, both their own and that of others. For embodiment scholars, however, “food femininities” or how women use food to enact feminine roles (Cairns and Johnston 2015) signify a key intellectual puzzle in the field: Are bodies the loci of social control, or are they mediums that enable self-actualization? Bodies are invariably templates of selfexpressions (Turner 1996), as they happen to be our most intimate possessions. It is the medium through which practices of the self (Winchester 2008) become possible. Yet, when using Foucauldian logic, it is easy to see how bodies are often subjected to societal rules and regulations to ensure the automatic functioning of power. Current scholarship on food practices of modern women points to a similar tension underlining feeding and fasting practices of women who use food or bodies as templates of self-expression. This is because, on one hand, modern women customizing their meal plans to lead healthy lives or to have thinner bodies can be viewed as self-affirming practices of the body (Gimlin 2002). If material bodies are indeed our most “intimate possessions,” then what we feed them is an equally intimate and personal act. On the other hand, there is strong scholarly evidence that food choices that seemingly help modern women nurture and grow are not precluded from patriarchal dictates of ideal feminine bodies or gendered definitions of good mothering practices (Bordo 1993; Bruch  1973; Brumberg  1997; Orbach  1986; Seid  1991; Thompson  1996). This body of scholarship infers that women primarily have a negative relationship with food. For instance, while socially expected to bear the labor of producing, preparing, and cooking food, women are more likely to be held responsible for not meeting cultural, nationalist, or ethnic definitions of how good mothers sustain their communities (BeauboeufLafontant  2005). Or, while expected to find pleasure in making choices about food

258   Jaita Talukdar (Moore 2013), women are also asked to regulate their eating to manage health and body weight out of considerations of meeting the thinness ideal of feminine beauty (Hesse-Biber 1996, 2007). As a theoretical model, food femininities have kept the questions of how women use food to define gender roles open-ended, swinging on a negative-positive pendulum depending on how individuals understand their relationship with food. For instance, the research discussed in this chapter on dieting and religious fasting practices of fortyeight women living in a rapidly globalizing context, India, spanning a little over a decade, shows that the relationships women form with their food and bodies are neither only about enacting learned feminine roles in society, nor are they quintessentially about self-gratification or self-loathing. Instead, women in this study constantly made dialectical choices about food. At varying degrees, the women did a cost-benefit analysis of following one eating practice over the other, and to an extent they engaged in both. Furthermore, when using a food femininities approach, this study found that for some women dieting, or administered weight loss practices, was an expression of their new identity as engaged, modern women of the world. However, for other women, the Hindu religious fasting, which has a purported goal of bestowing benefits to family members, was a way for the women to show their commitment to their social roles as homemakers. Seemingly, eating practices are then only extensions of the choices women make about which gender roles to adopt in their day-to-day lives. In this chapter, however, it is argued that food femininities, as a field of study, stands to benefit from an embedded approach that squarely locates the ways bodies are lodged in social hierarchies. Such an approach, or Bourdieu’s theory of the habitus that gives analytical priority to the “socially informed body,” when applied to this study, revealed that women who dieted were typically from privileged social classes and in positions to project their bodies onto the public sphere to secure the benefits that the new economic order could bestow, while religious, familial fasts represented the embodied collective, material struggles that less privileged women in the study encountered on a daily basis. Treating women as helpless victims of social conventions or as neoliberal, postmodern subjects to understand “food femininities” does not account for the fact that eating and dieting practices are closely linked to how bodies are situated in social hierarchies. Nor does it account for the social functions and roles that are tied to the female body. In other words, the choices Indian women in this study made about eating practices were in reality “embedded choices” that must be contextualized in the immediate social class milieus in which the women belonged, and from where they sought both meaning and recognition of their practice.

Feeding and Fasting Bodies of Modern Indian Women Contemporary India offers fascinating insights into feeding and fasting practices of modern women. Analyzing feeding and fasting practices of women in contemporary

Feeding and Fasting Bodies   259 India, particularly focusing on comparing modern dieting and religious fasting, requires a complicated understanding of food femininity or the embodied act of eating to express feminine roles in society. While neoliberalism has enabled a global culture on fitness and dieting to mobilize and consolidate its hold on Indian society, religious fasting as a family-oriented, communal practice has been able to maintain its stronghold against market forces. At the center of these intersecting cultural institutions of eating practices are women’s bodies. In this chapter, I evaluate the use of food femininities as a theoretical framework to understand varied eating practices of Indian women. On one hand, food femininities as a theoretical framework allowed me to see the cultural logic that privileged women in the study applied to their eating practices, who framed their understanding about food as conscious, educated choices they were making in their lives. On the other hand, when applied to understand eating practices of working-class women, the absence of the “I am making good choices” about food argument ran the risk of being interpreted as personal failures of these women. Later it will be discussed how the field of food femininities would benefit from a more embedded approach if its moves away from the choice argument toward an approach that looks into how bodily functions tied to gendered roles bring about a difference in how women make sense of their eating practices. Neoliberalism has ushered in a massive flow of global capital into the country of India (Chaudhuri 2001; Thapan 2009) that tends to target women’s bodies to sell products, including providing an array of market solutions of how to eat healthy food and lead robust lives (Butcher 2017). Modern dieting in India has followed a similar trajectory as the Western context; what used to be an isolated practice followed by urban, elite women, or those women who were exposed to Western cultures, became commonplace when the country relaxed its protectionist policies and opened up its markets to multinational companies. A new global standard of beauty—the thin and toned body—soon emerged and overturned the cultural appeal of well-rounded bodies. A thin body became the best representation of the modern, globally oriented, feminine identity. The fashion and beauty industry also played a significant role in popularizing the role of diets and celebrating the thin look, but its broader appeal had to do with broader workings of neoliberalism on the individual body. Scholarship on beauty cultures in Brazil and China has shown that neoliberalizing contexts do indeed foster body projects that are believed to enhance the aesthetic and economic value of the material body (Edmonds 2010; Otis 2011). A thin, fit body for Indian women, similarly, now signals freedom from religious-familial constraints that women experienced in previous generations, and a way to foster intimate relationships with their bodies and develop a robust self (Rose 2007). The advent of a market economy means that now Indian women can rely on an abundance of choices to create a repertoire or a “tool kit” of meanings about food that will enable them at the very least to diversify their experience, and at the most be successful in creating self-gratifying experiences in the face of patriarchal dictates of the female body. This has been the case for women in the West. For instance, Cairns and Johnston (2015) found that Canadian women engage in a process of reconciliation that entails acknowledging that they are indeed overexposed to cultural dictates of the body, but then going on to show disdain

260   Jaita Talukdar of “overly perfect performance of femininity” (157), and bracketing their own practices as choices they have made as informed, moral, and free subjects. Or, as Cronin et al. (2014) argue, women’s ability to resolve conflict over food choices should be merited to the postmodern feminine subject who has aced the skill of managing “paradoxical juxtapositions” that characterize living in consumerist cultures. Based on the aforementioned discussions, in order to apply a food femininities approach in its current form of theorizing to understand eating practices such as dieting and religious fasting practices of Indian women would mean to conceptualize her as a “postmodern subject” capable of expeditiously maneuvering her way through a field of choices. This analysis sees women primarily as agents of a market economy, who readily deploy a discursive rhetoric to manage contradictory choices. Typically such an approach allows us to see how women with purchasing power make negotiations about food and body types through the lens of “freedom of choice through consumption,” but it simultaneously creates an appeal for a disembedded approach that prioritizes market-enforced narratives of self-work. This also means that applying food femininities as a theoretical tool to understand food choices made by women who lead lives of limited economic means has a converse effect. Inability to economically engage with endless cultural choices about food or the body runs the risk of being discounted as personal failings of the women who are unwilling or incapable of such an engagement (Guthman and Dupuis 2006). Additionally, food femininities in its current rendition cannot account for eating institutions that have not been commodified and still function outside of the market-driven or neoliberal rhetoric of self-growth and personal responsibility. What follows is a discussion of the challenges food femininities would face when trying to understand the popular practice of Hindu fasting of Indian women, which has existed through centuries and has not waned in its importance as a religious institution. The religious fasting Indian women engage in falls under the realm of household chores and family responsibilities; it is inextricably tied to women’s obligatory roles as daughters, mothers, and wives (Khare 1976), and hence often referred to as a form of familial fast. This is because women’s role in maintaining eating institutions that cement and foster regional or nationalist bonds between family and community members, commensurate with her traditional identity of a homemaker, continues to maintain its stronghold in society. Successful completion of a fast, for Hindu women, means not only claiming a higher state of consciousness, but also demonstrating, through her fast, an unwavering commitment to her role as a caretaker. Abstinence from preparation or consumption of food—which is heavily interlinked with gendered responsibilities—is not a way to break free of their feminine identity (Brumberg 1988; Bynum 1987), but a means to further anchor it to its familial settings. The line between religious and consumerist aspects of fasting often gets blurred in the case of devotional diets in neoliberal societies. For instance, in the United States we have seen a rise in “devotional diets” or “Christian diets” that mobilize religious metaphors and faith-driven rationales for people to buy dieting products in the marketplace and get into fit shapes (Griffith 2004; Stinson 2001). Religious fasting in the Indian context,

Feeding and Fasting Bodies   261 in contrast, remains situated in domestic, religious, and inner worlds of women that have not yet been subjected to the rationale of market-driven discourses of self-growth or personal gratification. While the good homemaker ideology lies at the heart of Hindu religious fasting as practiced by women, the women also perform a type of ritual labor when they fast. Religious fasts in Hindu communities are an integral part of religious ceremonies centered on Hindu deities. Traditionally, women of the household have attended to the details of preparing for religious offerings and ensured that offerings are made in accordance with “rules of purity” characterizing Hindu lives (Madan 1991), and the deity and the place of worship are protected from any kind of profane contamination. Hindu women, in addition to keeping the fast, are responsible for specific ways of cleaning, cutting, and cooking the food and collecting the flowers being offered to the deity (Menzies 2010; Ray 1961). Being in this pure state of mind entails refraining from eating or drinking fluids, including staying away from the place of worship when menstruating (Nagarajan 2007). In this sense, a “pure” and “clean” body of the female practitioner is an offering in itself to a higher deity, at the crux of which, however, lies the desire for someone else’s well-being. This is to not suggest that Indian women do not reconfigure doctrinal practices of religious fasting in ways that benefit and aid their personal self-growth as they cultivate the virtues of perseverance, resolve, and spiritually cleansing their minds. But those virtues are firmly located in spiritual, nonmaterial domains of life and have not been subjected to the rigors of a neoliberal ethic of life. The cultural and social logic underlying religious fasting practices of Indian women thus seems to be antithetical to some of the basic arguments of the food femininities approach that has so far restricted itself to seeing eating as a form of market behavior. Here, an embedded approach that employs Bourdieu’s theory of habitus allows a reading of the “socially informed body” (Bourdieu 1977, 124), where bodies are irreducible elements of experiences that ground individual lives in particular structural arrangements. When it comes to analyzing feeding and fasting practices of women, intentionally linking them to their gendered roles and responsibilities, as determined by their social class location, illuminates the material and ideological resources available to women to successfully enact their food femininities. More specifically, this study links dieting and religious fasting practices of forty-eight women in the city of Kolkata to the habitus they live in; or how they are forms of embodied practices or structurally rooted dispositions that informs rules of engagement surrounding eating. An embedded approach allows us to move away from a consumerist interpretation of eating practices that treats women as market entities making decisions about food choices in a social vacuum, and instead locates eating practices in the structural contexts in which they unfold. Through this analysis, what will become clear is that in the lived realities of Indian women, bodily acts of religious fasting and dieting were means to secure and maintain social locations. Self-starvation practices, whether religious fasting or modern dieting, were used either to facilitate self-growth or to redeem hope and become resilient in the face of failing circumstances that were tied to class dispositions and aspirations. In other

262   Jaita Talukdar words, fasting and dieting practices of the women were embodied practices that consolidated their position in their immediate social class milieus.

Methodology The author’s interest in the topic began in the year 2005 as part of a dissertation project, which has blossomed into a long-term research that documents how the influx of neoliberal, market-driven wellness principles interface with traditional, endogenic ideologies of bodily well-being. This study is situated in Kolkata, a rapidly globalizing city of India, which like every other major metropolis in the country, and Third World contexts, has deeply entrenched, traditional institutions. For instance, the streets of Kolkata have American-styled gyms and dieting and wellness centers sprouting next to neighborhood temples and decrepit religious centers that have existed for decades. On auspicious days of the Hindu calendar, one can easily spot long lines of women gathered around temples to culminate their fasts, while also in plain sight are billboards planted atop buildings and bridges with pictures of women working out in gyms or exhibiting slim bodies to announce the arrival of a new weight loss centers or a gym in the city. Both practices of dieting and religious fasting are robust practices. An embedded approach, methodologically speaking, entails combining in-depth interviews and participant observation to understand how women explained their practices of fasting and dieting. More important, however, this study analytically prioritized how class location intersected with gender identities to influence practices of fasting and dieting, and employed a gender-class-body analysis. Accounting for one’s social class location means looking for dispositions that more than just organize our lives, but work at an intimate level to produce a “structure of feelings” (Skeggs 1996, 6) constitutive of varied bodily emotions of fear, anxiety, and conviction that shape experiences and self-subjectivities. Keeping social class as the main analytical category, the author sought women from different social class positions and asked them questions about their fasting and dieting practices. The purpose was to see which practices of self-starvation the women engaged in, and how their responses varied by social class location. Three social classes of women were identified—the new middle class, lower middle class, and the working class— based on existing scholarship on the class structure of contemporary India (Fernandes 2006). Though these class groups were categorized according to income levels, occupation, and education, there were also substantive material differences that characterized the lives of these women. The interviews were conducted in Bengali, the vernacular language of the city and state where the study was conducted. However, the educated women in the study, especially the women in the new middle classes, often responded in English. The author both transcribed and translated the interviews. The women in the “working class” (twelve women) were mostly rural migrants with little or no formal education and worked as domestic helpers. Their lives were marked

Feeding and Fasting Bodies   263 by a lot of financial instability, as their work and living arrangements were dependent on the whims of their employers. Some of them lived in squatter settlements, and others lived in low-income housing complexes. In sharp contrast to the working-class women were the women in the “new middle class” (twenty-two) of India who had very high educational and technical qualifications, spoke fluent English, and through their cell phones and other electronic means were cued into the affairs of the world. Even though these women were not all employed, they had professional degrees and hoped to be gainfully employed in the future. In other words, they represented the new, liberalized India and enjoyed a higher social status than the other women in the study. The women in the “lower middle class” (fourteen) were not as educated as women in the new middle class, though they all had high school diplomas. They had relatively stable lives, when compared to the working-class women in the study, as they lived in ancestral properties and were economically dependent on the men in the family who either owned small business or worked in low-end government jobs. The author entered the field with some expectation that women who claimed modern identities would align themselves with dieting, while women who espoused to the traditional ideology that women’s primary role in society is to be caretakers of family members would be fasting. The questionnaire also included questions that required respondents to reflect on the nature of their practice, especially the extent to which they their practices were self-affirming or regressive. During the author’s fieldwork, however, it became clear that social class was a more powerful indicator of how women interpreted practices of dieting and fasting. For the women in the privileged classes, dieting to attain a thin, fit body was a way to bodily mark their material status, while for the working-class women, religious fasting was a direct embodiment of the struggles they endured to provide for their family. This is not to suggest that there was a neat divide between women who fasted and women who dieted, but that the way they interpreted these practices depended on the bodily functions they fulfilled.

Dieting Bodies Similar to their Western counterparts, Indian women in the privileged classes took on an egalitarian stance on dieting and argued that healthy and conscious eating was a necessary practice to keep up with the rigors of leading rapidly changing, global lives. There was an acute sense of a newness surrounding dieting plans in the market, and the thin, fit body that pervaded all aspects of society, but then the women also believed that dieting was a natural development and the next destination in embodying the values of a modern and free woman. In sharp contrast, the women in the working class and in the lower middle class thought of dieting as an isolated, self-centered practice that did not yield any benefits to them or to the extended members of their family or community. To the working-class women, dieting was a practice of privileged women who were unbound to the physical effort and time it took to labor for others. Prior to the country’s

264   Jaita Talukdar move to economic liberalization, dieting as a practice of weight loss or managed eating was associated with affluent lifestyles of celebrity performers or elite women. However, since the country liberalized and employment opportunities for women multiplied, a thin, fit body started enjoying the same symbolic value as educational degrees or proficiency in the English language that were deemed necessary to succeed in the new economy. The urgency surrounding losing weight to attain this thin, fit body, thus, was most evident in the women in the new middle class and some lower-middle-class women who enjoyed familial support to pursue independent, professional careers. The women in the new middle classes explicitly linked their dieting practices to seeking employment in the fields of sales and personnel relations, or in becoming productive employees, as a body free of fat meant adding more “mileage” (Tina, 28 years old, new middle class) to their body to delay aging and fatigue. Tina also referred to her dieting practices as an “investment in her health,” which was a direct reference to a neoliberal ethic of the self. Typically driven by a “market rationality” (Rose 2007) of risk taking and maximizing self-interests, abiding by neoliberal values means investing heavily in the practice of self-work to build entrepreneurial selves. Admittedly, a lot of these weight loss concerns were done to “look good” and fit into Westernized clothes. However, to untangle their practice from being judged as vain, self-obsessive, or overly modernized, the thin body was projected onto the public sphere that held the promise of yielding social and economic benefits. The desire to “look good” or “feel good” was part of an emerging bodily disposition in the habitus of the privileged class who were eager and desperate to be part of a global world and distinguish themselves from the less socially mobile classes of modern India. For instance, Mita (30 years old, new middle class), who worked as a middle school teacher at the time of the interview, had a 13-month-old daughter and was struggling to lose the weight she had gained from her pregnancy. The way she understood her desire to manage her eating better to control her weight was that it was necessary to cope with the demands of work and taking care of her infant daughter. Growing up, Mita was “plump” and, unlike her sister, was not affected by the dieting frenzy that, according to her, affected most women. But only recently she realized that fat bodies pose unique problems for women responsible for both work and family. She shared: “I have gained some weight, and I have problems getting my work done. I want to be thinner, but to be thin I have to diet, and I cannot get around to doing that.” She did, however, make small changes that included giving strict instructions to her cook to use less oil in their food. Women like Mita who tended to be dismissive or amused by any talk of appearance or good looks when it came to their dieting practices became energized and animated when asked if health motives dictated their weight loss efforts. Leela (45 years old, new middle class), like Mita, had only recently felt that her body weight was a problem, but unlike Mita, she was a homemaker and mother of two grown children. Leela was regularly seeing a dietician to become thinner, which to her is the solution to overcome feelings of tiredness and exhaustion that come with raising her children. For these women, dieting not to meet aesthetic standards, but for good health and extra energy, was the path to become successful homemakers or employees.

Feeding and Fasting Bodies   265 Interestingly, both the women discussed here had live-in nannies and domestic helpers, but in their narratives they would not account for the help they had in managing their household. What became increasingly clear is the struggle that they were referring to was actually about how to project their bodies onto a public sphere. The women construed the public sphere both literally and figuratively. They recurrently spoke of feeling confident in wearing Western clothes in public when going out for family and social events, or in their daily commute to work. The transformation of women’s roles has brought an increasing number of women into public life. However, once a woman’s body crosses into the public sphere, it is open to scrutiny of others. Thus, the women spoke of dieting as a way to make sure that their bodies were free of fat, so that they could comfortably adorn Westernized cloths and cuts, and not draw too much attention to themselves. Others spoke of how once the thin, fit body was attained, it could be easily transported to other public spaces such as their annual vacations to Europe or the United States. This was a way of saying that the thin, fit body was a way to “do Westernization” right and with ease. For other women in this study, public spaces meant how others would perceive them, such as at their places of work. Saarika (24 years old, new middle class) believed that a thin, fit body would increase the chance of succeeding in the profession of “personal relations” or “human resource management” as the work requires creating favorable personalized relationships with clients. These bodily dispositions were recently learned behavior that the women were picking up from the social worlds around them such as their colleagues, and friends, but more important, the media sources that relentlessly push the idea that the modern Indian women is ambitious and determined (Chaudhuri 2001). But women like Saarika had the support of their family members in aspiring for thin, fit bodies, especially their mothers, who also believed that new times needed a new body. Hence, Saarika exclaimed, “Can you believe this that my mother who a couple of year ago would get upset if I did not eat a plate full of food, now asks me to do ‘portion control’?” Or when Mona (27 years old, new middle class) told me, “”When I see my mother going for morning walks every morning, I have to ask myself, why am I neglecting my health?” The disposition to attain and maintain a thin, fit body was taking root in the social milieus of the privileged classes, but the women ensured that I took account of the fact that they were willingly engaged in these practices, and such desires came naturally to them. Earlier I remember we used to order a full dish for ourselves; now it is almost natural that we end up sharing a dish, now it is almost the way it has become. (Lena, 28 years old, new middle class, emphasis mine)

This is not to suggest that Indian women will not bear the same scars that Western women have borne that come with extreme dieting, or develop unhealthy relationships with food and body (Pike and Dunne 2015). But for the women in this study, talking about dieting with ease was a way to demonstrate their modern, educated minds. The

266   Jaita Talukdar women who dieted were quite aware of patriarchal motives lurking in advertising and commercials surrounding the thin, fit body, and they chastised women who fell prey to cultural pressures of losing weight, often referring to them as “hungry faces” (Maya, 27 years old, new middle class) or “bag of bones” (Tina, 28 years old, new middle class). Without exception, however, the women argued that their own dieting practices were informed, educated efforts at leading robust lives. In this sense the women discussed so far were the postmodern, neoliberal subjects who had figured out how to make choices about food in ways that both fulfilled their gender roles in their lives and were selfsatisfying experiences. There were some young women, however, who knew that a thin, fit body was something that had to be actively acquired, especially since it was not expected from women in their social class. Anna (18 years, lower middle class) articulated this very well when, instead of invoking appearance concerns, she said, “I want to do something with my life” to describe her weight loss efforts. By “something,” she was referring to getting into college and finding a job for herself to assist her father in changing her family’s financial situation. While describing her weight loss efforts, she contrasted her life with her paternal aunt, who stayed in the same house as theirs but did not contribute to family finances. Anna attributed her aunt being overweight to her lack of ambition and drive in life, which Anna wanted to avoid. In recognizing that thin bodies have become indelibly linked to positions of privilege, she approached her own body as a form of capital in her ambition to climb the class ladder. Thus, the practice of dieting worked as embodied capital in the lives of these women. More than just securing their status as modern women, it also served as a marker of class and status distinction. The naturalization argument that dieting is a necessary appendage to lead ­modernized lives was starkly missing from the accounts of the working-class and lower-middle-class women in this study. This is not to say that these women did not have modern aspirations, or that they were unconcerned about developing healthy habits of eating for themselves and their families. Though subjected to the same cultural messages about dieting as women in the upper classes, the women in the lower income classes associated this practice with women who had the privilege of not manually laboring for their families. The women in the working class were dismissive of dieting practices, which they expressed through either silence or a shrug, and in some cases, a little laugh and mocking words that “they [privileged women] think they will become [fashion] models” (Malini, 18 years old, working class). Others like Sara (28 years old, lower middle class), a married woman with a young son and living with extended family members in a small house, associated dieting as a practice reserved for women with the material resources needed to engage in self-work. The women who diet are the ones who live in style and do not have to worry about household chores. . . . You need to have a family like that. We do not live in that environment; we did not get such families.

Moreover, Sara continued, “What will come out of it?” to suggest that she had little to gain from dieting as her own circumstances provided little to no scope for social

Feeding and Fasting Bodies   267 ­ obility, and dieting was not about to change it. The refrain among the women in both m the working and lower middle classes was that their lives were not privileged, where privilege was having access to material help to fulfill and uphold feminine duties and responsibilities society had placed on them. For instance, Baani (26 years old, lower middle class) said, “I am a housewife; I cannot follow any dietary restrictions. I have a child. If I fall sick, there is no one to give me a glass of water.” The difference in the dieting practices of the privileged and working-class women can be seen in how aware the women were of the material and ideological resources they had at their disposal. Privilege, for most women, whether they had it or not, typically meant being free of the domestic obligations rooted in their traditional roles as wives, mothers, and daughters-in-law, and having time for themselves and their bodies. Thus, it is not surprising that the privileged women failed to see that their ability to carve out in­de­ pend­ent eating practices separate from family practices was a result of the manual support they had in the form of nannies and cooks who were burdened with the larger share of domestic work. The women in the working classes, in contrast, who did not enjoy similar material or ideological privileges, expressed the least concern about body fat and weight loss, as it did not help them fulfill their gendered roles and responsibilities.

Fasting Bodies Liberalization of Indian society has not eroded the institution of religious fasting, and the women across social groups fasted. As predicted in research on religious fasting, the women spoke of how the physical act of starving the body made “practices of the self,” such as cultivating virtues of selflessness, introspection, and steadfastness, possible. Fasting, unlike dieting, is part of a familial, cultural tradition that is passed through generations. In this sense, fasting for religious reasons was already part of the learning environment or the habitus in which these women grew up. Differences, nevertheless, emerged in how women interpreted fasting and, more important, the extent to which the women followed the rules of fasting. The following analysis reveals that a close consideration of class statuses shows that the differences that emerged between fasting practices were linked to how involved the women were in the mundane production of daily household chores and responsibilities. As in the case of dieting, having privilege meant how free the women were from having to materially and manually provide for others, which was a direct consequence of the material resources and wealth at their disposal. The amount of privilege the women enjoyed further affected the extent to which the women followed the ritualistic dictates of female fasting that are part of Hindu culture. Maintaining religious fasts, as discussed earlier, was part of the ritual labor that the women followed on a regular basis, which encapsulated their feminine status as nurturers and caregivers of their families. The women in the new middle class were able to distance themselves from ritual labor accompanying religious fasting, while the women in the lower middle class and working class seemed to be deeply embedded in them.

268   Jaita Talukdar Religious fasting for the women in the working classes, however, was a powerful embodiment of their commitment to nurture and care for their families. The privileged women in my study were very critical of the ritualistic aspects of religious fasting, questioning the patriarchal motives underlying familial fasts, as some of them are dedicated toward the well-being of male members of the family. Their selfaccounts were focused on a symbolic distancing from the ritual aspects of keeping the fast to the point where one woman asked, “Where is the need to starve? I eat before I make my offerings” (Anita, 21 years old, new middle class). This makes sense only if we see that Anita was questioning the bounded, rigid aspects of familial fasts, which Hindu women are expected to follow. Others like Anita, representing the younger women in my study, similarly framed their ability to not engage in ritual aspects as a choice that modern women could exercise, if only they informed themselves. Radha (28 years old, new middle class, emphasis mine) said, “I like fasting; it makes me feel good—nothing else. It is something I do out of choice.” This choice was often extended to pushing fasting toward “extra-religious” goals such as cleansing the body of toxins, or re-energizing the mind. According to the class logic of the new middle-class women, unbeknownst to the less educated women, religious fasting was in reality a type of “scientific dieting” (Dora, 30 years old, new middle class). Ritual-intensive practices of familial fasts were not compatible with their status as in­de­ pend­ent, postmodern, neoliberal subjects of the modern world. Chandni (46 years old, new middle-class) referred to the fasting practice of her domestic helper as “nothing but superstition.” Their inability to see that economic motives were a driving factor underlying fasting practices of working-class women was a result of them being privileged, and more important, as Bourdieu has argued, being able to keep economic exigencies at bay. In sharp contrast, almost all the women in the lower income classes did some kind of familial fast. Though they were similar to the new middle-class women in relating fasting to subjective well-being, it also became clear that their religious fasting practices grounded their precarious existence in a familiar tradition. Particularly, for the working-class women, their bodies are “instruments of survival,” for it is through hard, manual labor as domestic helpers, or construction and factory workers, that they make ends meet. The women, however, attributed the goodness of the practice to more than just the emotional aspects of feeling perseverant and determined amid material difficulties. Fasting meant coming together as a family and neighborhood with real and fictive kin members to attend to ritual details, break the fast, and pray together at communal religious sites. Hence, more than one woman recounted, “Everybody says it (fasting) is a good thing to do, so it must be good” (Piya, 43 years old, working class). By “everybody,” they were typically referring to their mothers, mothers-in-law, and fictive kin members, but by referring to them as “everybody,” the women were invoking both imagined and actual bodies with whom they believed they had common material destinies. This became evident when the women mentioned they fasted to solve practical problems such as lack of work or illness in the family, or good school results for their children, in addition to the fact that it was a good practice to follow. The gatherings centered on

Feeding and Fasting Bodies   269 r­ itualistic details of the Hindu fast and embodied the collective struggles they encountered on a daily basis to provide and nurture for their family. The women in the lower middle class also expressed similar sentiments that fasting was a way to maintain and relive bonds of companionship they shared with other women in the family, though they enjoyed more material benefits than the women in the working class. This is not to suggest that the women in the lower income classes were not skeptical of the ability of religious fasts to transform their material realities. In a way, it is the same criticism they had levied against dieting practices, which demonstrates their ability to recognize that merely following bodily-centric practices would not help them bridge the economic gap that existed between them and the privileged classes. This realization was also a result of the women living at a time when they could witness the economic transitions that the society was undergoing, while their habitus remained motionless and unchanging. Kaveri (25 years old, lower middle class) had this to say: The woman has to fast. After all, she is the one who stays at home. Men will get up in the morning, eat, and leave the house. Women stay at home the whole day; when they see their child is sick, they have to take care of them. It is the rule of the world family that a mother takes care of her child. This is how it is.

Kaveri lived in an extended household and shared most of the physical space in the house with other members of her family. Most of her day was spent taking care of her son and her mother-in-law, while her husband worked as a helper in a neighborhood grocery store. She said she was content with her life, though at one point during the interview, she said she was envious of the rich women she saw on television. For others, like Saara, fasting for the well-being of others was a difficult reminder of the fact that their lives were so consumed in caring for others that they had “nothing to call their own.” While fasting practices dedicated to protect and serve their families were a potent source of perseverance for the women in the working and lower middle classes, it paradoxically served to remind the women, to paraphrase Skeggs (1996), their “place” in the social hierarchy. For instance, Saara (29 years old, lower middle class) had this to say about her practice: I did not do too many fasts before my marriage. That changed after I came to this house. My sister-in-law told me, “It needs to be done,” and so I do it. Everyone does the fast. Here, there is nothing to call your own.

The statement “Here, there is nothing to call your own” is indicative of a self that encountered daily struggles and probably felt expended or worn-out amid the difficult realities of a life rife with material constraints. By using the term “here,” Saara demonstrated her ability to recognize a “there,” an alternate lived position of privilege where women do not have to continuously and ceaselessly provide for others.

270   Jaita Talukdar

Conclusion In this chapter, we have seen that treating women as neoliberal, postmodern subjects or as helpless victims of social conventions to understand food femininities sidelines the fact that their bodies are situated differently in social hierarchies. Dieting and religious fasting practices, which can be both self-gratifying and strenuous experiences in the lives of women, took on very different meanings depending on how they enabled women to seek recognition and meaning in their daily lives. This analysis of fasting and dieting practices reveals that the dialectical rules of engagement when enacting feminine roles through food are intimately tied to the cultural and material bodily resources at their disposal. There is some acknowledgment in existing studies that the choices that women claim to exercise when it comes to their eating practices are not about being flexible about their diet patterns, body type preferences, or cooking preferences; rather, they involve being in positions of affluence and privilege where they can comfortably reason with or resolve contradictory options facing them. Women of actual limited economic means, however, are acutely aware not only of their inability to exercise “choice-centered consumer femininity,” but also that their practices are seen by others as a personal failing, and not that good, robust food choices come at an economic price with limited accessibility. This was evident in the present study as well, though what it brings to light are the structural contexts in which dispositions surrounding bodies and foods are formed and adapted to. The women in the lower income classes were quite aware of the material limitations they faced in engaging in practices of dieting, which was not merely about an absence of an ability or desire to make a choice, but how their bodies were planted in social contexts that required producing for others. In contrast, the women in the privileged classes were able to carve out personalized niches surrounding their eating because they were able to somewhat free or dislodge their bodies from the routine production of daily, domestic life. The women who dieted projected their bodies onto the public sphere to secure the benefits that the new economic order could bestow, while the women who engaged in familial fasts found value in dedicating their lives to the higher vocation of serving others. However, the ability of the privileged women to distance themselves from the traditional, gendered connotations of fasting was a result of not having to produce hard bodily labor to maintain their families and livelihoods. For the lower income women, there was an acute realization that though fasting consolidated their status in their immediate social milieu as selfless nurturers, the practice by itself could not be converted into viable forms of capital to change their social status. An embedded approach to understand food femininities allows for a more complicated understanding of how food femininities are enacted, where choices are not made in a vacuum but considerably shaped by the immediate cultural and material resources available to women. Future research in the field of eating institutions needs to account for how women’s bodies are planted in social hierarchies, and how intimately they are tied to the enactment of modern femininities.

Feeding and Fasting Bodies   271

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chapter 16

Con tr asti ng Scien tific Discou rses of Sk i n Lighten i ng i n Dom estic a n d Gl oba l Con texts Celeste Vaughan Curington and Miliann Kang

“There may have been no blizzards so far in New York City this winter, but there is one place where women are confronting a complete whiteout, the beauty counter.” This New York Times article, entitled “Skin Brighteners Find a Welcome,” goes on to note the increasing range of products used to address pigmentation concerns, mostly by women. Yet, while many of these products have similar ingredients and results, they are marketed very differently as skin whitening, skin brightening, anti-aging, or spot-correcting products. The article cites Christine Dagousset, an executive vice president at Chanel, who explains the company’s rationale for the different packaging of these products: “In Asia, there are a lot of whitening products, and that’s what the category is called, which is in reference to the pearl-white skin that they aspire to have. In the US, it’s different because it’s more about evening the complexion, and it’s for all ethnicities. We call it brightening. It’s not about the color of the skin” (Felder 2012, 1). The assumption that women in Asia desire whiter skin, while women in the United States seek a more even complexion is a common refrain, not only in advertising materials but in scientific studies addressing the safety and efficacy of these products. These discourses then become self-reproducing—women outside the United States buy products labeled “skin whiteners” and then are assumed to desire lighter skin, whereas women inside the United States buy similar products packaged as “brighteners” and then are seen as desiring brighter or smoother complexions. But are these product labels reflective of actual desires, or do they manufacture and inscribe these desires onto

274   Celeste Vaughan Curington and Miliann Kang c­ ertain women’s bodies? What kind of bodies are more likely to be constructed as desiring whiteness, as opposed to brightness, smoothness, youth, or other measures of skin attractiveness? And what kind of scientific evidence is invoked to support these claims? To explore these questions, in this chapter we examine scientific discourse around skin bleaching and lightening through content analysis of scientific journals, paying special attention to the framing of these practices as a social problem. We build on the feminist critiques of science that show how representation is an inherent aspect of scientific discourse (Harding 1986; Subramaniam 2009) and argue that the academic discourse on skin lightening is an instructive case to examine how scholarly focus on certain embodied practices reinscribes biological understandings of race, gender, skin color, and culture. By focusing on scientific representation, we demonstrate how regimes of socially constructed “knowledge” and “truth” are produced and disseminated across various intellectual communities. This is not saying that science has no basis in objective truth or that knowledge is merely subjective. At the same time, it raises questions about the biases that underlie scientific inquiry, and it attempts to show how they impact a particular area of study, such as the health risks associated with products designed to change skin tone. The aim is not to discredit these studies but to reveal certain invisible and potentially harmful suppositions, particularly regarding the construction of certain bodies and embodied practices as foreign and racially other. In the following, we examine how information on skin lightening is framed, discussed, and disseminated within scientific literatures and ask the following: What assumptions underpin scientific examinations of skin lightening? How do they vary according to the context and characteristics of those studying these practices and those being studied? Finally, what do these variations reveal about construction of racialized and gendered bodies through scientific discourses about skin lightening? We find that these studies often frame products in the United States and Europe somewhat contradictorily as benign cosmetics, but also as “illegal” imported or “trafficked” beauty products. In contrast, similar products in non-Western contexts, particularly in Asia and Africa, are depicted as dangerous health risks which are widely and locally sourced. This analysis thus illustrates how scientific studies of skin lightening reflect and contribute to the differentiation of diverse bodies through embodied practices and products used to alter them.

Scientific Studies of Skin Bleaching Searches of scientific databases uncover a variety of articles that provide information regarding the negative effects of skin-lightening products in medical journals. The International Journal of Dermatology, the International Journal of Cosmetic Science, the  International Journal of Molecular Science, and the American Journal of Kidney Diseases, among others, all contain a range of articles that examine the effects of skin lightening products on users from a variety of national contexts. In this health-related body of

Contrasting Scientific Discourses of Skin Lightening   275 l­ iterature, scholars focus mainly on the effects of the chemicals found in skin-lightening creams, such as hydroquinone, mercury derivatives, and topical steroids (Gabler and Roe 2010; Hamed et al. 2010; Lewis et al. 2012; Margulies n.d.; Merinville 2010). Further, many articles from these sources offer educational strategies to attenuate consumption, warning that the overuse of these products can lead to serious complications, such as infection, Cushing’s syndrome, skin atrophy, and ochronosis (skin darkening and disfiguration) (Gabler and Roe 2010; Ntambwe 2004). We argue that this literature could benefit from greater attention to the meanings given to the uses of these products and the racial, gender, and transnational contexts that shape these meanings. Indeed, Mire (2012) has used the term “scientification of skin whitening” to assert that “by using the language, technologies, and techniques of science–medicine, including medical delivery systems, the skin whitening industry becomes integrated into legitimate scientific research” (284). Her research focuses on the problematic ways that publicly funded university research projects are used to support for-profit development of cosmetics and biotechnology. Building on her concerns with the blurred boundaries between scientific research and corporate marketing, we focus on related but distinct concerns. Specifically, we address how discourses of science reinforce racial representations by constructing the figure of the “skin-whitening or lightening user” as a selfharming, uneducated, dark-skinned woman, often from the Global South. In contrast, the consumers of similar products in the Global North are depicted as self-actualizing agents who are seeking to maximize their health, youth, and attractiveness. For instance, though scholarly publications on skin lightening importantly discuss the detrimental health effects associated with continued use of cosmetics containing high levels of hydroquinone, mercury, or corticosteroids, they explicitly highlight usage in Asia, the Caribbean, or the African Continent (for examples, see Hamed et al. 2010; Merinville et al. 2012; Petit et al. 2006). This focus ignores the fact that usage rates remain prevalent in contexts like the United States and the European Union, despite regulations (Gabler and Roe 2010; Hamann et al. 2014). Further, though the European Union has banned many of the hazardous chemicals found in contemporary skin-lightening products, studies find that these products still are easily purchased in the European Union “black market” (Desmedt et al. 2013; Gaudiano et al. 2010). While sales of products containing chemicals such as mercury have been banned in the European Union, manufacture is permitted if the product is exported to non–European Union countries (Eagle, Dahl, and Low  2014). Studies have also focused on how exported lightening products are “smuggled” back into the European Union and the United States for sale within immigrant communities (Blay and Charles 2011; Gaudiano et al. 2010; Glenn 2008). What is more, in the US and European markets, lightening products are sometimes marketed as age-erasing or “brightening” products, and draw less attention, whereas the “skin lightening” or “whitening” label on similar products draws much more heightened concern (Felder  2012; Louis  2010; Shrestha  2013). Critical scholars additionally report that several of the symbols and messages disseminated via ­ ­skin-lightening advertisements are also found in cosmetic products that target white

276   Celeste Vaughan Curington and Miliann Kang audiences. Rather than referring explicitly to “whitening,” they are more likely to reference skin clarity and evenness, and utilize terms such as soft, natural, vital, and youthful (Baumann 2008; Shrestha 2013). Yet, as we will illustrate, despite the prevalent use of these products within the United States or Europe by nonimmigrant people of various racial and ethnic backgrounds, white women often escapes scientific scrutiny.

Social Sciences and the Humanities While scholars of dermatology, public health, and cosmetic science document the physical effects of skin-lightening agents, social scientists and gender scholars emphasize the structural forces that create, perpetuate, and influence a global “yearning for lightness.” Evelyn Nakano Glenn (2008) and Margaret Hunter (2011) examine how Western multinational corporations specifically target darker skinned women through the transnational dissemination of cosmetic advertisements and promotions that uphold colorized depictions of beauty, property, vitality, and progress. The supposed assets of utilizing these products capitalize not just on lighter skin, but on procurement of skin-whitening products and practices as forms of symbolic capital in and of themselves, especially for women in the Global South. Indeed, in contemporary contexts where a white cultural ideal is still pervasive, non-white individuals who possess closer to light or white features have been shown to have greater access to social and economic capital (friendships, marriage, and labor markets) (see Pierre 2008; Rondilla and Spickard 2007; Saraswati 2010). Scholars also examine how practices of skin bleaching have been driven historically by colonialism where privileges were afforded by the elite to individuals who possessed European-like features (Blay and Charles 2011; Charles 2009; Garza 2014). For example, the Dutch granted higher social status to individuals of mixed Dutch-Indonesian ancestry during the colonial period in Indonesia (Saraswati 2013). The Spanish elite developed a system in many of its former colonies referred to as “castas,” which determined one’s legal and social standing in society based on ancestry. While these systems were based on ancestry, not color, lighter skin was assumed to be a marker of more Spanish ancestry and less indigenous and/or African ancestry (Garza  2014). Transnational scholars also note that meanings of lighter skin vary across space and nation (Leong 2006; Saraswati 2010, 203; Shrestha 2013). As L. Ayu Saraswati (2013) argues, contemporary skin lightness embodies a form of “cosmopolitaness,” or the ability to be transnationally mobile. The “freedom to move transnationally,” states Saraswati, “involves proximity to whiteness—and this is the essence of a nonessentialist, ‘virtual,’ cosmopolitan whiteness” (24). These findings, again, ultimately highlight the need for an intersectional analysis of skin lightening that treats skin color as a subject of analysis in its own right, but alongside other socially significant and constructed categories such as race, gender, and nation.

Contrasting Scientific Discourses of Skin Lightening   277

Data and Methods The data for this study include thirty scholarly articles on skin lightening published between 2000 and 2017, both domestically and internationally. Interestingly, domestic journals did not focus mainly on the effects of skin lighteners on users from the United States. Instead, much of the scholarship on skin lightening that is written and published in the United States concerns regions outside of the United States. This is a useful data point in and of itself: American users of skin lighteners are seldom subjects of inquiry by domestic researchers. This method of sampling both US and international journals allows for a robust analysis of the convergences and deviations between local and global discourses on skin lightening. Articles from international journals also focus mainly outside the United States, examine the effects of skinlightening agents in “developing” countries, and recommend initiatives to inhibit the use of the products. The initiatives posed in international studies also aim to reach a broader audience outside of the academic community, particularly medical practitioners. One major limitation of this study is that articles were drawn solely from English language and electronic journals. In the future, we would like to assess whether there are significant differences between the representations of users of skin-lightening products within English and non-English language journals, as well as within electronic versus nonelectronic journals. All articles were accessed through Internet library databases such as Wiley Online Library (WOL) and Academic Search Premier (ASP). In an effort to get a broad sense of the discourse concerning skin lightening, we used various search words that refer to the use of skin-lightening agents. For the WOL and ASP search engines, we selected advanced search between January 1, 2000, to March 1, 2017, and searched for all documents that included the terms (1) skin bleaching, (2) skin whitening, (3) skin lightening, (4) mercury, (5) hydroquinine, and/or (6) corticosteroids in their title, body, or abstract. The data accessed through these keywords captured articles that used both racial and nonracial, color-coded and noncolor-coded keywords to discuss the use of cosmetic products. This strategy captured a broad sense of the scholarly discourses on skin lightening, without limiting queries to publications that explicitly sought to examine the racialized dimensions of these practices. We removed some articles from the final sample that did not have sufficient findings to fit the study.1 Throughout the data collection period, we periodically returned to WOL and ASP search engines to determine whether new publications had been made available. Several European-based or US-based articles included citations of the very international articles included in this study, thus highlighting cross-referencing within the network of scholars that are currently engaging in the skin lightening debate. Thus, a focus on either international or domestic articles alone would obscure this increasingly important, and increasingly global, dimension of scientific studies on skin lightening and their representations.

278   Celeste Vaughan Curington and Miliann Kang We used qualitative content analysis to identify words, themes, and ideas reiterated across scientific publications concerning skin lightening. The value of content analysis as a method lies precisely in its ability to enable its practitioners to detect how symbolic codes and themes relate across cultural documents (Glaser and Strauss  1967; Reinharz 1992). As such, the deconstruction of texts serves to make sense of the ways in which texts teach their audiences to “structure personal systems of meanings” (Reinharz 1992, 149). We developed coding categories both inductively and deductively. Deductive codes drew from existing studies showing that the category “non-Western woman” is often conflated with that of “skin lightening user” in several forms of discourse (Glenn 2008; Saraswati 2013; Shrestha 2013). Inductive codes were established based on recurring terms found in the data. This method did not seek to determine the representativeness of any given article or the articles as a whole, but rather to assess the main findings and interpret the dominant narratives. Thus, in line with feminist scholar Clare Hemming’s (2011) instructive work on the political grammar of feminist theory, we reference the data by citing the journal in which it appears, as opposed to specific authors. In this way, we represent the power of institutional production by highlighting the patterns in scientific discourses on skin lightening rather than singling out the arguments of a single author or study. We also aimed to use content analysis as a means to critique these discourses and open possibilities for conducting critical research (Altheide 1987). These methods also prioritized an intersectional analytical approach and feminist standpoint epistemology (Collins 1993; Harding 1986). The value of feminist standpoint epistemology is twofold. First, it grounds analyses in the lives of people under scientific scrutiny, as their subjectivities and voices are oftentimes left out of the research design. While we could not include the voices of these women directly, we emphasize the subjectivity of the women who use the products by showing how they are often constructed as lacking agency. We also seek to make more visible the specific historical, material, and ideological power structures that limit their subjectivity, specifically the discourses constructing them as “skin lightening users” in scientific studies. Mohanty (2003) insists that “race-and-gender-conscious historical materialism” (11) must inform theorizing the local in relation to the global and vice versa. Incorporating this transnational approach with an intersectional analysis, we aim to show that while meanings of skin color are socio-historically specific, the status of “skin lightener” is often essentialized based on region. To counter these essentializing discourses, we argue that the uses and users of skin-lightening products must be situated in specific formations of race, class, gender, and nation.

Findings Studies of the use of skin-lightening products reveal several recurring narratives about which individuals or groups represent the category “skin lightening user,” the reasons particular users resort to skin lightening, and their defining traits. We find that these

Contrasting Scientific Discourses of Skin Lightening   279 studies often frame products in the United States and Europe somewhat contradictorily as benign cosmetics, while similar products in non-Western contexts, particularly in the continents of Asia and Africa, are depicted as dangerous health risks. Overall, scientific studies of skin whitening and lightening practices enforce the differential valuation of bodies, as well as the products used to alter them.

Articulating US Exceptionalism Scientific articles depict women as having varying degrees of control over their own bodies, with this narrative taking on distinct meanings according to the sites of study. Specifically, dermatological studies that centered on the effects of skin lightening agents in the US and European contexts constructed the use of these products as a matter of “age,” “healing,” or “correction” of sun damage or hyperpigmentation, while the practice of skin lightening was pathologized when used in non-Western contexts or when the practice was taken up by non-white and immigrant women in Western countries. These discourses problematize the desire to change skin tone based on assumptions of internalized racism, but they fail to take into account the influence of ageism and ableism on these skin “correction” practices and even naturalize the desire to appear younger and healthier. For example, some experimental studies on the effects of skin whitening in the United States read as follows: The objective of this research was to examine lignin peroxidase melanin breakdown in a cosmetic formulation designed to improve appearance in subjects with  mild to moderate facial dyspigmentation. (Journal of the Academy of Dermatology) Solar or actinic lentigines (AL) are very frequent benign hyperpigmented lesions associated with age and chronic sun exposure. . . This single center, double-blind, randomized, placebo controlled study with intraindividual (right/left) comparison was conducted on 36 white female healthy subjects presenting ALs on the dorsal part of their hands. (Journal of the Academy of Dermatology) Through aging and skin color changes, the melanin repartition is less homogenous and some age spots can appear. In this focus, we used an in vivo confocal ­microscopy to evaluate the effect of a whitening agent on skin pigmentation. (Journal of the American Academy of Dermatology)

In this sampling of experimental studies, lightening agents are discussed in relation to “hyperpigmented lesions,” “skin pigmentation,” and “age spots.” Of course, the aim of these experimental designs was to assess the utility of lighteners to attenuate these issues, but, notably, there is no discussion in the article regarding the demographic background of the participants, nor is there discussion concerning the idealization of youth as the reason why individuals may resort to treating age spots or pigmentation of the skin. Rather, the purpose of the study is framed around the application of an

280   Celeste Vaughan Curington and Miliann Kang experimental product on unidentified skin for medical treatment. Motivations and identities are thus assumed to be neutral, without consideration of the myriad motivations and implications of body modification. In contrast, articles published domestically provided racial and ethnic demographic information about participants only when the study’s participants were identified as non-white. In other words, these studies constructed non-white gendered bodies (“Asian,” “African,” etc.) within skin lightening discourses, whereas white bodies remain invisible and unnamed, as evidenced in the following excerpt from an empirical study: This investigator-blinded, randomized, paired, controlled, split-face study enrolled 60 female subjects age 18–65 years with mild to moderate facial dyspigmentation defined as a Melasma Area Severity Index (MASI) score between 1 and 3 modified for a split-face design. (Journal of the Academy of Dermatology)

It is unclear whether the participants who suffer from “facial dyspigmentation” in the earlier study identify as white, but they are constructed as belonging to the normative category of whiteness by their race not being named. By juxtaposing the invisibility of whiteness with the hypervisibility of non-white bodies and skin, such articles attribute practices of racially unnamed subjects as based on individualized medical “needs” and personal choice in opposition to practices which are attributed to group membership defined by race or other some social category. Likewise, they focus only on racial group membership and neglect other categories of difference based on age or ability. For example, in another US-based experimental study published in the same journal, the demographic background of participants as Asian is explicitly stated: The purpose of the study was to evaluate the efficacy and tolerability of a sheet mask containing salicylic acid, sugar derivative, vitamin C derivative and ceramide when used alone and in combination with a facial serum containing salicylic acid, sugar derivative and vitamin C derivative, by a panel of Asian women presented with hyperpigmentation and dark spots. (Journal of the American Academy of Dermatology)

As illustrated earlier, readers are made aware that the participants of the experimental study were “Asian” and “women” who in fact possess “dark spots,” even while the conclusions of the study drew no conclusions based on the racial or national background of participants. Thus, the invisibility of whiteness and visibility of non-whiteness is used to construct skin treatment practices in the US context as benign, or as normative desires for youth and health, rather than based on racialized desires of attractiveness and body modification. It is important to stress, however, that some publications did include discussions of the cultural reasons why individuals resort to using skin-bleaching or skin-lightening agents in the United States. However, these publications often only referred to “dark” immigrant bodies specifically and therefore tacitly upheld the notion that problematic use of skin lighteners in the United States occurs mainly among non-Western immigrants. For example, one article provided background of one subject who entered the hospital with serious burns due to overuse of a skin-bleaching agent. As the paper explains, a “a 15-year-old healthy

Contrasting Scientific Discourses of Skin Lightening   281 Somali female, who had been living in the US with her parents for two years” was seen in an emergency room for “a progressively painful body rash.” In this same article, readers (likely doctors) are also warned to be hypervigilant of “dark-skinned” patients as prone to “deny” using such products. Individuals may deny the use of products, but physicians should consider skin lightening in any dark skinned patient presenting with skin dyspigmentation or other known complications of skin bleaching. (Journal of the American Academy of Dermatology)

The aforementioned concern to protect and accurately treat individuals who are using harmful chemicals is, of course, valid. But, again, our study is concerned not with what are the actual harmful effects of these products, but rather what the framing of the practices reveals about scientific discourses related to non-white bodies. Here, we see how dark and immigrant bodies fall under heightened scrutiny because they are assumed a priori to take up the nontherapeutic practice of skin lightening (in fact, in the earlier quote, medical practitioners are even warned that patients with dark bodies should be seen as untrustworthy). In other articles, the practice of skin lightening for nontherapeutic reasons is associated with specific non-Western contexts, such as Asia. One such article explicitly states that Asians are driven by a penchant for skin whitening: In the Philippines and in most parts of Asia, behavior favoring a lighter skin color has driven the development of a lot of skin whitening products, making it one of the most common forms of body modification practices in the world. (Journal of the American Academy of Dermatology)

In the aggregate, the narratives constructed by these domestically published journals are those of invisibility and visibility; some (white) bodies are invisible from the discourse while other immigrant and non-white bodies are hypervisible. And the ­discourse of (white) US exceptionalism is not only apparent in studies of users of skin-lightening products, but also carries over to studies examining the marketing of these products. In a study on skin-lightening products and their advertisements in India and the United States, Shrestha (2013) finds that multinational companies often rename advertisements of the same products that are sold and disseminated throughout various national contexts. Products marketed in the United States that contain equal amounts of hydroquinone as those sold outside the United States are described as eliminating unevenness and providing clarity, while comparable products sold in India racialize beauty ideals by stating that “whiteness” is the desired objective (Shrestha 2013). In this sense, the invisibility of racialized language in products targeting US consumers mirrors the invisibility of demographic information in US-based scientific studies that examine the effects of lightening chemicals on unidentified users. Furthermore, as we discuss next, this race- and gender-neutral language largely ­contrasts with the propensity of these studies to characterize use of these products outside of the United States as a dangerous menace.

282   Celeste Vaughan Curington and Miliann Kang

Articulating “Therapy” versus “Harm” While scientific studies published in international journals likewise focus on examining the harmful impacts of skin-lightening products, the notion of “harm” itself is constructed differently across articles. Greater emphasis is given to the class and education of the individuals and to the level of economic and social development in the national and regional context. Specifically, scientific studies attributed harm to a user when these products were utilized by socially disadvantaged individuals of darker complexions while studies constructed lighter and advantaged others as engaging in “treatment” or “therapy.” For example, a study that draws from survey data and examines the effects of skin-lightening products on “women from Jordan” and a select community of “Arab women” reads: Women with light skin tone use the skin-lightening products mainly to treat hyperpigmentary disorders (50%) rather than to lighten their skin tone (9.1%). As the skin tone becomes darker the driver for usage is mainly the women’s preference of lighter skin tone rather than the need to treat hyperpigmentary disorders. . . . In addition, women with low educational level appear to use the skin-lightening products mainly because of their preference of a lighter skin tone (66.7%) compared with women with higher educational level (bachelor degree); just 13.5% of them use these products solely because they prefer lighter skin tone, 33.8% use it to treat hyperpigmentary disorders, and 27% use it for both reasons. Further, women with higher income levels (more than 600 JD) are more driven by the therapeutic application of skin-lightening products (80%) rather than using them solely to lighten their skin tone (20%) compared with women with low income level whom only 24.6% of them use these products to treat hyperpigmentary problems. (International journal of Dermatology)

As illustrated in this quote, women who are highly educated, high earning, and lighter skinned are described as resorting to skin lightening for purely medical or “therapeutic” purposes to treat “hyperpigmentary disorders,” while darker skinned, lower educated, and lower earning women are seen as using skin-lightening products due to “preference of a lighter skin tone.” This characterization of the use of skin-lightening agents by highly educated consumers as “therapeutic” reveals classed assumptions that these practices are consciously chosen as an effective form of treatment. Indeed, some articles differentiated “therapy” from “mutilation” based on the class status of the users, without fully considering the multiple possible ways that class may influence perceptions and desires regarding skin tone. Wealthy and more educated women were credited with using skin-lightening products for the treatment of specific skin conditions, rather than harmfully reacting to societal proscriptions against darker skin and their attendant social inequalities. In contrast, scientific studies constructed darker, lower earning, and less educated women as victims who had internalized desire for lighter skin and, as a result, were grossly abusing lightening products and causing self-harm.

Contrasting Scientific Discourses of Skin Lightening   283 These studied thus attributed use of skin-lightening products to class and educational differences, instead of interrogating the full range of explanations for how members of different class groups accounted for their use of similar products. One possible explanation of these differences is that college-educated women know how to code their responses using therapeutic or medical terms, in order to reflect what survey researchers expected to hear or in response to the categories made available to them. Indeed, while studies report that socially advantaged women are more dissatisfied with their bodies than are socially disadvantaged women by class and education, research also finds that there are apparent classed dimensions regarding the “right” ways to present and care for one’s body (Mclaren and Kuh 2004). Whereas advantaged women may seek and adhere to medical advice regarding how to “correct” qualms with one’s own body, less advantaged women are unlikely to have access to such knowledges or resources to carry out such tasks. Differences in education therefore may account less for differences in respondents’ actual practices or motivations for using these products and more for their access to classed knowledges about “caring for” and “correcting” one’s body, and how to articulate these knowledges. Further, rather than easily attributable to class or education, it is difficult to gauge precisely how societal factors that influence a yearning for lightness are internalized and then expressed. Instead, assumptions regarding the characteristics of users of skinlightening products led in many cases to tautological explanations of internalized oppression, self-hate, and misguided “cultural” notions of beauty. Finally, even if darker skinned women from the Global South are indeed using these products more widely, and even if these practices are driven by the desire for whiteness or lightness, what factors account for this desire, other than assumptions of the women’s pathologies? A robust body of social scientific literature documents how the US system of social stratification within the labor, wage, dating, and marriage markets values lighter skin tone gradations (Herring, Keith, and Horton,  2004; Hunter  2005). Individuals who use skin-lightening products thus could be seen as responding rationally to pervasive social conditions that reward lighter skin, rather than expressing irrational or pathological longings. Thus, the criteria used to determine whether a skin-lightening procedure or product constituted a medically advisable, therapeutic treatment or the infliction of harm depended on the characterization of the user, rather than on assessment of the treatment itself or the condition being treated.

Representations of Different Bodies and Embodiment This focus on the identity of the user rather than on the condition or treatment as the basis for determining pathology reveals various scientific biases regarding the representation of bodies and embodied practices. Postcolonial feminists have criticized mainstream Western feminists, and scholars more broadly, for constructing and reinforcing imagined notions of racial, national, and gender differences that

284   Celeste Vaughan Curington and Miliann Kang s­ensationalize and ­ exotify non-Western embodied practices as uncivilized (Mohanty  1988,  2003; Narayan  2013). Binary categories of Western/non-Western, core/periphery, developed/undeveloped, or north/south relations underlie knowledge production, including scientific representations of bodies and embodiments. Similarly, we argue that scientific studies situate skin lightening not merely within certain geographical areas; rather, they map out politicized domains in which the identities of regions and peoples are understood through embodied terms, in this case, assumptions of striving for lightness. Through their hyperengagement with women users of skin lighteners outside of the United States and Europe, scientific articles articulate the notion that skin lightening is a problem of gendered bodies that are predominant in certain spaces and largely absent in others. Based on our data, the topic of skin lightening is constructed by scientific studies as a social problem unique to the non-US and non-European world, or to racial or immigrant groups within the United States or Europe. However, given the pervasiveness of colorism globally, the conflation of “skin lightening user” with “non-Western” woman is incorrect. For example, a study found that several widely used products in the United States contained levels of hydroquinone, the most concerning compound in skinlightening products, which surpassed the US Food and Drug Administration’s ­regulations (Gabler and Roe 2010). Thus, rather than being absent in the United States and Europe, it is more likely that certain users of skin-lightening products escape persistent scientific scrutiny, while others attract attention as the already presumed population that employs harmful skinlightening practices. A number of published articles articulated specific gender and nationalized depictions of exactly who the “ideal” user of skin-lightening products is—a darker skinned woman, most often from Africa, the Caribbean, or Asia. Such an emphasis, in turn, reinforces a dichotomous understanding of the United States and Europe as white-only spaces. These narratives demarcate the boundaries between an imagined “us” and “them” and perpetuate hidden power relationships at play when scholars direct their gaze upon a geographically bounded space that people are believed to “naturally” inhabit. As evidenced later, this construction of skin lightening as a “foreign” practice is further heightened in that, when focusing on the United States or Europe, users are almost always identified as immigrants: Health providers in other African cities, as well as those dealing with immigrant communities in northern countries, should be aware of this growing problem. (British Journal of Dermatology)

In this study of African immigrants to France, skin lightening is coded as a non-European or non-white practice that is being imported by foreign bodies. Health providers of northern cities are warned to maintain an awareness of a “growing problem” that presumably accompanies the simultaneous growth of African immigration. In these representations, differences in race, ethnicity, and citizenship are used to draw distinctions from those who “have control over their own bodies” (Mohanty  1988, 12). Scientific

Contrasting Scientific Discourses of Skin Lightening   285 ­ iscourses thus can simultaneously echo and articulate alarmist discourses that characd terize immigrants as outsiders in need of regulation and control. Another article based on skin-lightening products and their usage in Belgium not only constructs these practices as largely occurring outside of the nation’s own citizenry, but also as illegally penetrating the country’s borders. Discourses of illegal bodies and products are thus conflated: 163 suspected skin whitening cosmetics, collected by Belgian inspectors at high risk sites such as airports and so-called ethnic cosmetic shops, were analyzed and 59% were classified as illegal. . . . Despite extensive legislative regulations, skin whitening deploying illegal products that contain prohibited substances such as HQ, mercury and corticosteroids are still detected, and have documented health problems, especially in subpopulations like dark-skinned European immigrants. (Journal of Pharmaceutical and Biomedical Analysis)

As evidenced by this quote, the framing of the skin lightening debate produces meanings and knowledges pertaining to the kinds of bodies which legitimately or illegitimately inhabit certain spaces. “Western” countries where immigrant communities resort to body modification are discursively represented as free from internalized oppression and cultural notions of inferiority, yet vulnerable to the importation of these vices. In other words, the scientific construction of skin lightening as a problem pertaining solely to a “growing” immigrant community sheds light on how scientific studies construct European national identities through the othering of certain bodies and the simultaneous regulation of foreign beauty practices. Indeed, the earlier mention of “dark-skinned European immigrants” not only constructs users as foreign but also maps skin color, and attempts to alter it, onto political boundaries. By separating harmful practices between light citizens and dark newcomers, this discourse resolidifies a conflation between Europe and whiteness. In this context, histories of immigrant communities of color in European spaces are either ignored or their presence is characterized as growing “dark-skinned” “subpopulations” that threaten notions of a homogeneously white-skinned Europe. What is more, this discourse is naturalized through its depictions of seemingly ir­ref­u­ ta­ble scientific assessment of embodied characteristics. Several of the dermatological articles we analyzed included pictures of the actual users of lightening agents. One such article published in France contains several photos of women and men. For instance, in one image of a fully undressed Nigerian woman whose face is left out of the picture presumably for reasons of “anonymity,” the author includes the following subtitle: “A 50-year-old cushinoid housewife with exaggerated papular urticaria on steroid-damaged skin.” Another article published in Brussels includes pictures of unevenly discolored hands, feet, and bare back presumably belonging to an immigrant woman of a dark complexion. In the process of visually representing the effects of hazardous products, the objectification and simultaneous construction of a certain kind of racialized gendered body, and its risks, becomes naturalized within the medical discourse on skin lightening.

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Articulating Biological Race Finally, dermatological and cosmetological articles, while ostensibly focusing on ways that skin-lightening users put their health at risk, also reinforced ideas that skin color is the basis for racial categorization, and that desire to change skin tone is an indicator of deviation from racial norms. Such essentialist arguments are rationalized through narratives that suggest that users of skin-lightening products were rejecting their “real” racialized form, thereby misusing products that aim to defy a natural state of skin tone differentiation: Skin of Arab people is classified as ‘‘Ethnic skin’’ with pigmentation darker than that of Caucasians and classified as Fitzpatrick skin phototype. (International Journal of Dermatology)

In fact, several articles included outdated vocabulary to distinguish between the “races.” Terms such as “Asian skin” or “Mongoloid skin” or “black skin” were utilized uncritically. For instance, several articles published stated the following: In the last years, Rapid Alerts from European Medicinal Regulatory Agencies evidenced the presence of a large number of illegal and counterfeit anti-inflammatory products advertised for their whitening action on black skin in the European market. (Journal of Pharmaceutical and Biomedical Analysis) With regard to human subgroups, skin lightness then shows a rather small dynamic rangeas, from the darkest to the fairest skins, L* values, on cheek bones, range by approximately 20 units (45–65, respectively), Asian skin appearing intermediate [12]. (International Journal of Cosmetic Science) Clinical studies have demonstrated the beneficial effects of dioic acid as a skin lightening agent, at 1 or 2% in formulations and compared with arbutin (data not published), hydroquinone [16] or corresponding vehicles [17] in Asian populations (Mongoloid and dark Caucasoid). (International Journal of Cosmetic Science)

While the use of terms such as “Asian populations,” “Mongoloid and dark Caucasoid,” and “black skin” and “Asian skin” were common throughout articles, in reality these classifications are highly ambiguous and contested, rather than scientific facts. For example, “black skin” is not an “African” specific trait. Not only are there Afrodescendant Europeans and Americans who may share this phenotype, but other groups in regions ranging from South America, South Asia, the Pacific Islands, and the Middle East may share comparably dark phenotypes, as skin color does not evenly map onto socially constructed racial categories or national boundaries. Further, terms such as Caucasoid and Mongoloid presented earlier reflect histories of contested scientific racial classifications. For example, German philosopher Christoph Meiners (1787) endorsed scientific racism and stated that the world was divided into “ugly” (Negro, Asian, Native American) and “beautiful” (white) races. Philosopher Immanuel Kant (1724–1804) attributed the reasons for differences in skin

Contrasting Scientific Discourses of Skin Lightening   287 color to inherently biological dispositions among the so-called races (Eze  1997). Together, the scientific classification of bodies based on skin tone differentiation, phenotype, and notions of “beauty” became fully integrated into racialized scientific classifications spawned from an international Eugenics movement (Roberts 2011). Their presence in contemporary scientific studies on skin lightening, therefore, deserves much greater caution and interrogation. For example, Winnifred Brown-Glaude’s (2007) work on public debates around skin bleaching in Jamaica shows how scientific discourses on skin bleaching essentialize race not only “by mapping blackness onto bodies” (35) but also disciplining those bodies through media and public health campaigns. Studies of the effects of chemicals on surfaces described as “Mongoloid skin” or “Black skin” also illustrate how scientific discourses of embodied, biological differences can be used to determine race and racial hierarchies. Indeed, the mapping of certain skin-related pathologies onto distinct human bodies not only enforces notions of race based on skin color but reinforces the valuing of certain bodies over others based on skin and its treatment. The depiction of dark-skinned users of skin products and treatments as rejecting a “natural” racialized state was present throughout various scientific studies, while less research examines the effects of lightening products on white users in the United States and Europe, where these products are instead marketed as “spot removal” or “anti-aging” products.

Conclusion Scientific discourses that validate categories of “normal” and “abnormal” skin colors frame discussions of various skin products and treatments as either positive attempts to augment health or as pathological exercises in internalized racism. In turn, these normalized skin categories and practices reinforce ideas of “race” as based mainly on skin color. Furthermore, they map onto and regulate other racialized categories such as “native” or “immigrant,” “legal” and “illegal” bodies, and “normal” and “abnormal” bodily functions. Accounts of skin lightening as a global phenomenon discursively define the United States and Europe and their presumed populations of “white” women as less likely to engage in harmful body modification and beauty practices. While we did not pursue this line of investigation ourselves, an interesting comparative study would be to examine discourses of skin tanning in scientific literature. While there is strong evidence regarding the dangers and risks of these practices, a cursory look at the literature does not show the same kind of racialized assumptions of self-harm through “skin darkening” that underlies most skin lightening studies (see, for example, Dodds et al. 2018). In fact, if these studies assumed that white women were trying to become black by using these products and treatments, they would most likely be immediately discredited. However, the assumption that dark-skinned women desire to change their racial identity and categorization to white is almost taken as a given.

288   Celeste Vaughan Curington and Miliann Kang Though contributing important findings that inform debates about skin lightening, scientific studies both overstate and understate the ways that racial ideologies shape skin whitening practices and their representations. These studies often recognize the dominance of a white cultural ideal but, rather than tracing its structural and historical determinants, instead pathologize those who aspire to it. Rather than offering a more nuanced analysis of how women understand and respond to cultural ideals of light skin, many scientific studies reproduce discourses around skin whitening in the media which assume that women of color reactively strive for whiteness out of ignorance or self-hatred. Instead, our analysis illustrates how the scientific “study” of certain phenomena that are often understood as “beauty practices” construct and naturalize the differentiation and valuation of bodies and the products used to alter them and often neglect the dynamics of global white supremacy, marketing, production, and distribution in the global beauty economy. We argue that the linking of skin lightening to women exclusively from either “immigrant communities” or “developing” nations not only runs the risk of stigmatization but also homogenizes and essentializes the kinds of bodies that are assumed to inhabit these regions. Many of the scientific studies that we examined constructed the users of skinlightening products as deviant for attempting to violate static racial norms. In other words, the mere labeling of certain products and behaviors as seeking “skin lightening” is already gendered, nationalized, and racialized, as it ascribes intention and confines these practices to communities already assumed to engage in them. These assumptions run parallel to discourses on other public health issues or embodied threats. In the context of the United States, studies of embodied issues such as criminal violence, rape, sexual abuse, obesity, and drug addiction have overwhelmingly been applied to ethnic and racial minorities in both contemporary and historical contexts (e.g., “yellow peril” disease threats) (Collins 2000; Kawai 2005). These biases can also go unnoticed in scientific research, such as when the connection between preference for lighter skin and “Asian” or “African” woman is regarded as biologically determined and thus becomes a “commonsense” facet of social life (Omi and Winant 1994). Overall, what is disquieting about scientific discourses on skin lightening is not that they highlight its increasing use and potentially pernicious effects, but rather that they associate certain groups and kinds of bodies with these products. It is not simply the practice of skin lightening and its potentially harmful effects that bring it under scientific examination, but rather specific bodies are assumed to be the objects of skin lightening and thus attract greater scrutiny. This recognition is critical, as it opens the possibilities for more rigorous standards of scientific research not only regarding skin lightening, but other body alteration practices whose actual health risks may be misunderstood or distorted by assumptions based on gender, race, class, region, immigrant status, or other forms of difference.

Note 1. For example, some articles were not included because they discussed the chemical composition of hydroquinone but did not discuss the chemical as it relates to the application of the chemical on skin via consumer cosmetics/products.

Contrasting Scientific Discourses of Skin Lightening   289

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290   Celeste Vaughan Curington and Miliann Kang Hamed, Saja  H., Reema Tayyem, Nisreen Nimer, and Hatim  S.  AlKhatib. 2010. “SkinLightening Practice among Women Living in Jordan: Prevalence, Determinants, and User’s Awareness.” International Journal of Dermatology 49, no. 4: 414–420. Harding, Sandra G. 1986. The Science Question in Feminism. Ithaca, NY: Cornell University Press. Hemmings, Clare. 2011. Why Stories Matter: The Political Grammar of Feminist Theory. Durham, NC: Duke University Press. Herring, Cedric, Keith Verna, and Horton Hayward Derrick. 2004. Skin Deep: How Race and Complexion Matter in the “Color-blind” Era. Urbana: University of Illinois Press. Hunter, Margaret L. 2005. Race, Gender and the Politics of Skin Tone. New York: Routledge. Hunter, Margaret L. 2011. “Buying Racial Capital: Skin-bleaching and Cosmetic Surgery in a Globalized World.” Journal of Pan African Studies 4, no. 4: 142–162. Kawai, Yuko. 2005. “Stereotyping Asian Americans: The Dialectic of the Model Minority and the Yellow Peril.” The Howard Journal of Communications 16, no. 2: 109–130. Leong, Solomon. 2006. “Who’s the Fairest of Them All? Television Ads for Skin-whitening Cosmetics in Hong Kong.” Asian Ethnicity 7, no. 2: 167–181. Lewis, Kelly M, Navit Robkin, Amber Martin, Emily Andrews, and Justin Williams. 2012. “The Need for Interventions to Prevent Skin Bleaching: A Look at Tanzania.” Journal of Black Studies 43, no. 7: 787–805. Louis, Catherine Saint. 2010. “Creams Offering Lighter Skin May Bring Risks.” New York Times, January 10. http://www.nytimes.com/2010/01/16/health/16skin.html. Margulies, Paul. n.d. Cushing’s Syndrome: The Facts You Need to Know. https://www.nadf.us /adrenal-diseases/cushings-syndrome/. McLaren, Lindsay, and Diana Kuh. 2004. “Women’s Body Dissatisfaction, Social Class, and Social Mobility.” Social Science and Medicine 58, no. 9: 1575–1584. Meiners, Christoph. 1787. Grundriss Der Geschichte Der Menschheit. Lemgo: Verlage der Meyerschen Buchhandlung. Merinville, Eve, Adam J. Byrne, Anthony V. Rawlings, Adam J. Muggleton, & Aurelie C. Laloeuf. 2010. Original Contribution: Three Clinical Studies Showing the Anti-aging Benefits of Sodium Salicylate in Human Skin. Journal of Cosmetic Dermatology 9, no. 3: 174–184. Merinville, Eve, Adam  J.  Byrne, L.  Visdal-Johnson, G.  Bouvry, Johanna Gillbro, Anthony V. Rawlings, and Aurelie Laloeuf. 2012. “Clinical Evaluation of a Dioic Acid–Based Formulation on Facial Skin in an Indian Population.” International Journal of Cosmetic Science 34, no. 6: 575–581. Mire, Amina. 2012. “The Scientification of Skin Whitening and the Entrepreneurial UniversityLinked Corporate Scientific Officer.” Canadian Journal of Science, Mathematics and Technology Education 12, no. 3: 272–291. Mohanty, Chandra Talpade. 1988. “Under Western Eyes: Feminist Scholarship and Colonial Discourses.” Feminist Review 30: 61–88. Mohanty, Chandra Talpade. 2003. “US Empire and the Project of Women’s Studies: Stories of Citizenship, Complicity and Dissent.” Gender, Place and Culture 13, no. 1: 7–20. Narayan, Uma. 2013. Dislocating Cultures: Identities, Traditions, and Third World Feminism. New York: Routledge. Ntambwe, Malangu. 2004. “Mirror mirror on the wall, who is the fairest of them all.” Science in Africa, March. Omi, Michael, and Howard Winant. 1994. Racial Formation in the United States: From the 1960s to the 1990s. New York: Routledge.

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chapter 17

U n ru ly Bodie s Figurative Violence and the State’s Responses to the Black Panther Party Randolph Hohle

In 1959, Mike Wallace and Louis Lomax introduced the Nation of Islam to the five ­boroughs that make up New York City via a television documentary titled The Hate That Produced Hate. It was produced by the show Newsbeat and originally aired as a five-part series on Channel 13. Wallace introduced the Nation of Islam as a group dedicated to black supremacy and proponents of black racism. Images of a large congregation of black men and women listening to Louis Farrakhan, then known as Louis X, perform his play The Trial, flashed across the screen. The play put whites on trial and condemned them as murders, adulterers, and thieves. Whites were the cause of many social ­problems that disproportionately affected the black community in the mid-twentieth century. The actors in Farrakhan’s play were involved in a dual performance. They performed for the audience sitting in the chairs in the theater, and they performed for the audience sitting in front of the television set at home, many of whom were whites who felt racially threatened by the Nation of Islam. This example indicates how bodies carry meanings into different interpretative ­contexts. Social movements cannot control how dominant groups and state actors recast their embodied performances as a threat to their existing moral order. This chapter explains the importance of the body in shaping the state’s responses to social movements. More specifically, it explains how the embodied struggle for equality and civic inclusion inadvertently creates the conditions for a state backlash. Embodied performances, defined as “how the presentation of the body is a key variable in any form of protest and highlights how the body serves as a form of symbolic communication independent from its action” (Hohle 2013, 60), are a key part of every social movement. The same embodied performance necessary for recruitment and establishing a collective identity also serves as the point of state resistance to the social movement. Thus, a paradox that social movements face is that the logic of success and state opposition results from the same embodied phenomenon.

294   Randolph Hohle Social movements consciously and purposively present the body to help create a political community and communicate to others who they are and what they want. While some aspects of a social movement emphasize racially nonthreatening or gender conventional bodies to facilitate civic inclusion (Hohle 2009a; Seidman 2002), other movements use threatening bodies to challenge the status quo and empower members of a marginalized group (Hohle 2013; Klawiter 2008). I use the concept of figurative violence to refer to how social movements make threatening bodies to inspire their allies and instill fear in their adversaries (Hohle 2013, 83). Figurative violence includes two aspects of embodied violence: actual violence and symbolic violence. The Former refers to committing acts of aggression while the Latter refers to how the body is embedded with symbolic meanings associated with a threat to the dominant group’s moral framework. A body can be threatening without having to commit an act of violence by its association with a political movement. Figurative violence illustrates when members of a political group exercise power over the self, it will activate resistance from the state that is different from a nonthreatening embodied performance. As Foucault argued, the body is the site where the state inscribes power on the body, and where there is power there is resistance (Foucault 1979, 1990). Social movements also inscribe power on the body, so there is a relational aspect of power that culminates in either the state response to eliminate the threatening group or the dissolution of the group after it achieves some objective. In this regard, the interpretative context of state actors and the state’s response is the effect of a specific embodied performance. Figurative violence is embodied through specific practices, like gestures and postures, appearance, as well as through the use of emotions. Bodies emote, and the emotions of others trigger an emotional response in us. We love, cry, and feel empathy. But we also yell, scream, shout, and feel anger. The latter emotions are associated with fig­ur­a­tive violence. Bodies can reject or exaggerate gender conventional gestures and postures. The body can be fashioned in cultural threatening colors. A mask can cover the face. Specific types of facial hair, like the prisoner’s mustache, or tattoos and facial piercings, can make a body threatening via its links to a subculture or gang. Social movements use bodies to occupy spaces socially reserved for another group. The state also uses figurative violence. We can observe this through how state actors respond to social movement or protest. The state uses disciplinary power to train the military and police by making muscular bodies with the capacity to deploy violence, as well as arming and outfitting the military and riot police in uniforms, masks, and armor. What makes a body threatening depends on the assemblage of threatening embodied practices. The state does not respond to all racially threatening groups the same way. This is where the intersection of race and a normative embodied performance explains the form and degree of the state’s response and the absence of a state response. For example, white nationalists and white power groups, such as neo-Nazis or member of the Ku Klux Klan, make their white bodies threatening to others via shaved heads, swastika and iron cross tattoos, openly carrying weapons, displaying confederate symbols, or wearing white hoods. They use their bodies to communicate white solidarity with other racist whites and try to instill fear in racial minorities and immigrants. White supremacist

Unruly Bodies   295 groups used figurative violence as a method of social control over racial minorities. This differs from white “color-blind” and “respectable racism” that is based on the avoidance of direct racial statements and observable embodied links with white nationalism (Bonilla-Silva 2015). Although elite whites and state actors are not synonymous, there is significant overlap through shared white discursive structures and white frames (Feagin 2013; Hohle 2018). In turn, the state does not criminalize or use police violence toward white nationalists as it has historically done to black groups. This chapter explains how figurative violence was vital to the Black Panther Party’s (BPP) success and was the focal point for elite white and state actors to mobilize against racial equality in the post–civil rights era. There is not a uniform state response to black social movements, nor is there a uniform ideological white response to black protest (Hohle 2009b). The state’s response to blacks claims for equality is assembled by the links between the specific embodied performances, actual instances of racial integration, and threats to elite white power. Sociological analyses of the body and embodiment have to show that embodiment is important in of itself and avoid either substituting the body for identity or conflating an embodied analysis with textual and discursive analysis. Therefore, the next section specifically outlines a methodology and analytical strategy of how to study the body in historical and political sociology.

How to Study the Body in Historical and Political Sociology How do we study bodies and embodiment within political sociology and historical ­sociology? This chapter uses comparative-historical methods that is standard practice within historical sociology (Lachmann 2013). The comparative part of the methodology looks for commonalities and differences between at least two entities under study. The historical part of the methodology analyzes change over time. Comparative historical methods allow one to analyze how black nationalist groups organized around the logic of figurative violence as a way to distinguish themselves from other aspects of the civil rights movement. It also allows one to analyze the various state responses to the BPP, including how the state response came about, which captures change over time, and the relations between the movement and the state. Data for this chapter come from primary sources and secondary sources. I use primary sources, such as published interviews, first-hand accounts of events, speeches, and memoirs, and materials produced by the different organizations. Primary source data are valuable because they allow one to analyze how the actors under study made sense of an event or situation at the time. Manuals, which include things like rules of conduct, capture how they did things and wanted the group to do things. I also use secondary sources, other historical accounts, to capture the structural forces at play and as a way to verify that groups did what they said they did.

296   Randolph Hohle Studying embodiment within historical and political sociology means incorporating the body into the methodological framework noted earlier. Embodiment captures how actors and groups internalize cultural structures, and through practice or performativity, have some degree of agency. Whereas the body has been used to explain the social reproduction of power and how identities are stabilized (Bourdieu 1990; Butler 1993), I want to understand how the body exerts effects on other social actors. For our purposes here, bodies are not only the objects of state control or state violence but are also a ­contributing factor that causes the state to act. The analysis of the body within ­comparative-historical methods requires multiple analytical steps, as the body should be analyzed relationally with other cultural, noncultural, and even nonhuman entities to capture the construction of the body and the body’s impact on a given political outcome (Latour 2005). The first step involves mapping the historical context. Historical sociology uses ­historical context to explain the emergence of large-scale social phenomenon, such as the rise of capitalism, nation-state formation, or social movement mobilization (Lachmann 2013). Defining the historical context means tracing how social structure makes social action possible as well as providing the limits of social action. The formation of either a specific or general social structure is understood to be salient and enduring into the present day, and relevant to explaining current social problems. Social structure should include the spatial location of bodies as well as the social location of bodies. The spatial location is important because resources are invested and concentrated in specific places and, in turn, this creates social isolation and shapes regional cultures (Gottdiener 2019). The social location emphasizes the intersections of social group membership and socioeconomic status, such as race and class. This explains how specific groups, such as white men, acquire privilege relative to multiple marginalized groups (Crenshaw 2016; Feagin and Ducey 2017; Hill Collins 1990). The second step is analyzing how a social movement or political group constructs the body from their standpoint, being mindful of the political and interpretive context shaping group praxis. I use insights from semiotics. In its most basic use, semiotics is the study of how symbols acquire meaning (Barthes 1977). However, the body is more than a symbol, so we have to make a slight adjustment on how we analyze the body versus how we analyze text. Within semiotics, the sign is the meaning of the word or object, or for our cases here, the body. The sign is comprised of the signified and a ­signifier. The ­signifier is the actual social practice. The signified is the culturally ascribed meanings attributed to the embodied practice. Therefore, the units of analysis include the body’s actual movements (or nonmovements) such as postures, walking, speech, dialect, health and well-being, styles of dress and appearance, eating habits, sexual practices, and basically anything that would fall under the category of self-care. The emphasis should be on the how bodies are made because that is where we locate the exercise of power. For example, the how can be found by analyzing training or instruction manuals or the lessons transmitted in the backstage of embodied performances. To say that a body is socially constructed means analyzing how signifieds are linked with various corporeal practices.

Unruly Bodies   297

Table 17.1.  Sample Contingency Table to Analyze Embodiment in a Historical Context Historical Context Social Actor

Interpretive Context

Knowledge Formation

Objective, goal, Normative Body or grievance claim A. Social movement

Good: Bad:

B. State actor

Good: Bad:

Frame/ discourse

Outcome Intended political outcome

Actual political outcome

Social movements create idealized and normative categories to define group ­membership. Social movements will make and organize bodies into categories of good and bad. The normative category will not necessarily be constructed relationally between groups, such as black/white or bourgeoisie/proletariat. The category can be constructed in relation to an idealized concept like citizenship (Hohle 2013). Therefore, the coding of embodied practices should have at minimum two categories, good/bad, for each social actor under study. I have included a sample contingency table (see Table 17.1) to analyze how body captures connections and specific sites of resistance between the state and the social movement under study. Although the body has been conspicuously absent from the study of the state, embodiment imposes the contextual and interpretative conditions for state actors to interpret social movements (Hohle 2010). State actors, including political office holders, bureaucrats and administrators, and the police, as well as social groups that make up the polity, including ordinary citizens and elites, read bodies as they draw from cultural frames, narratives, and the discourse of civil society. Social actors draw from the various interpretive contexts to judge others as good and bad, worthy or unworthy, or threatening and nonthreatening (Alexander 1992; Katz 1996). However, the socially situated body within a given field can alter the meaning, desirability, and administration of social welfare programs. In particular, my work has emphasized how various racialized bodies, which includes white and black bodies, as well as important intersections between race and gender, shape and stabilize how state officials, historically elite white men, created a segregated welfare state to unfairly distribute means-tested benefits to exclude black women with children in rural areas from AFDC (Hohle 2013, 108–137). The elite white business class constructed a racially nonthreatening white body, expressed through embodied practices of moderation, and contrasted it to black bodies, which they defined as naturally inferior on the basis of physical differences, to draw ordinary white support for early neoliberal policy on the basis of good white workers (Hohle 2012; 2015, 59–62).

298   Randolph Hohle

Black Authenticity and the Civil Rights Era Local black nationalist groups began to appear in northern cities in the 1930s. Seven ­different black nationalist groups existed in Detroit, including the Nation of Islam. Sociologist Erdman Beynon called them “voodoo cults” in 1938 (Doane Beynon 1938; Lincoln 1961). Although none of the groups approached the membership levels, geographical footprint, legal victories, or political influence of the National Association for the Advancement of Colored People (NAACP), they were the originators of using black authenticity to carve out a race-first political identity. At the time the NAACP was advancing racial equality primarily through legal challenges against segregation, the black nationalists were embodying a form of black authenticity as a direct challenge to white racism and status differences within the black community. Black authenticity refers to the embodiment of an idealized “racially pure” black political agent. The logic of black authenticity is that whites cannot understand the lived experience of black people and thus are not equipped to lead and, in some cases, participate in black struggles for equality. Black authenticity switched the political struggle away from acquiring new rights to forcing the state to uphold its end of the deal and enforce existing rights. It switched the political focus away from integrating into existing social institutions that reproduce racism to creating new institutions designed to address the needs of the black community. Therefore, black authenticity included rebuilding black communities from the ground up, creating a black-owned labor market and electing black politicians to represent black people. Black authenticity is embodied. The Nation of Islam was the lone survivor of the  Detroit-based black nationalist groups, in part, because their organizational structure extended beyond the temple and religious instruction and focused on retraining and remolding the black body. The Nation of Islam formed two institutions of note, the University of Islam and the Muslim Girl Training Classes. The Muslim Girl Training Class trained black women on the Nation of Islam’s way to clean a house, sew, cook a Muslim meal, and take care of children. Black women were responsible for teaching everyday self-care and dietary practices that defined one as a member of the Nation of Islam. The University of Islam taught black history, Arabic, and trained black men in martial arts and bodybuilding to prepare black men to be a part of the Fruit of Islam, the Nation of Islam’s internal police force. The bodies of black men were made muscular to be physically intimidating. They were made to reflect, even emphasize, the black stereotypes whites feared the most. The Fruit of Islam was responsible for enforcing the organization’s moral codes, and it doled out punishments to members who misused temple funds, used narcotics, fell asleep during meetings, ate or sold pork, were overweight, or disrespected Muslim women (Lincoln  1961, 201). The punishment ranged from doing manual labor at a local Muslim temple to banishment from the group. Black authenticity was an achieved

Unruly Bodies   299 identity, accomplished through abstaining from embodied practices associated with whiteness and slavery. Malcolm X positioned black authenticity as an alternative to the ideal of good black citizenship associated with Martin Luther King and the civil rights movement. The Southern Christian Leadership Conference (SCLC) used citizenship schools to make racially nonthreatening bodies. They accomplished this through role-playing and simulated demonstrations to train young black men and women to refrain from emotional outbursts associated with negative black stereotypes (Hohle 2009a). SCLC’s Citizenship Schools provided lessons on hand writing and word pronunciation. The Student NonViolent Coordinating Committee (SNCC) trained leaders how to use their bodies to protect fellow protesters from white and police violence. Ideally, racially nonthreatening bodies would pave the way to desegregate neighborhoods, the workplace, schools, and public parks by creating alliances with sympathetic and anti-racist whites. Northern blacks remained suspicious. They could already vote and still endured discrimination in the housing and job market despite reflecting good black citizenship. Figurative violence includes the expression of emotions. Bodies emote and are moved by affective stimulations. Emotions are natural, but they are something we learn to control. Malcolm X argued that blacks should freely express emotions because it was the most natural and, in turn, the most honest response to racial discrimination. Here is Malcolm X directly addressing the value of expressing emotions in relation to remaining racially nonthreatening: Here the man has got a rope around his neck and because he screams, you know, the cracker that’s putting the rope around his neck accuses him of being emotional. You’re supposed to have the rope around your neck and holler politely, you know. You’re supposed to watch your diction, not shout and wake other people up—this is how you’re supposed to holler. You’re supposed to be respectable and responsible when you holler against what they’re doing to you. . . . He dies with a responsible image, he dies with a polite image, but he dies. The man who is irresponsible and impolite, he keeps his life.  (Malcolm X 1990, 21–22)

Malcolm X isolated black suppression of emotions as a performativity of white power. A system of racist black codes and economic sanctions enforced by the state compelled blacks to accept their inferior social position relative to whites. For Malcolm X, training blacks to not hate or lash out was preparing them to remain compliant with the white power structure. Although the expression of emotion was a rejection of white power, it also amplifies the degree that the black body is threatening to whites. Malcolm X and The Nation of Islam were not involved in electoral politics or the civil rights movement. They did not vote or participate in any marches or demonstrations. Their few real political acts targeted black imprisonment and police brutality. Nevertheless, they had a real impact on black political mobilization in the mid-1960s, as members of SNCC began organizing around the principles of black authenticity in Atlanta and Chicago. It is important to emphasize that these black nationalist groups were all

300   Randolph Hohle nonviolent. What made the various civil rights era black nationalist groups threatening to elite whites and the state was the practice of figurative violence as they rejected Jim Crow customs and racist institutions.

The Black Panthers and Figurative Violence The 1965 Voting Rights Act was both the high point of the civil rights movement and the beginning of its decline. On the one hand, King and other civil rights leaders became vocal critics of the war in Vietnam. In response, Lyndon Johnson wavered on his support for civil rights. On the other hand, other factions of the civil rights movement switched its focus from new rights to substantive issues of rising urban poverty, including residential segregation, growing inner-city slums, continued workplace discrimination, and police brutality. The shift from rights to urban issues reflected the change in where blacks lived, where they were allowed to live, and the growing problem of urban black poverty. The second great black migration, which began after World War II, and saw blacks migrate from southern rural areas to cities, included about one-third of the entire black population. By 1960, 73 percent of the black population lived in urban areas. That proportion rose to 80 percent by 1970. Cities concentrate people and resources, and thus, social problems like poverty and unemployment, crime and police brutality, and inadequate health care, are amplified in spatially concentrated areas (Massey and Denton 1998). Urban renewal strategies in the 1960s simply retraced the old racial zoning lines of the early twentieth century. A combination of legal restrictions on where blacks could live and banks redlining neighborhoods to deny loans to black homeowners created the black ghetto. Police violence and brutality was an undercurrent of everyday black life that came to the surface during the “ghetto revolts” of the mid-1960s (Feagin and Hahn 1973). The political and cultural landscape of the post–civil rights era posed new problems that could not be solved with new rights. Huey Newton and Bobby Seal formed the BPP in 1966 in relation to the emerging urban social problems in the black community, specifically police brutality. Indeed, the BPP’s original name was the Black Panther Party for Self Defense. Although the national and urban political landscapes were in transition, the two embodied representations of good black citizenship and black authenticity continued to shape how Newton and Seal would mobilize the black community. The BPP had a direct relationship with SNCC, who wanted the Oakland activists to be the military wing of SNCC. The Oakland activists declined. The Oakland Panthers took their name from SNCC’s Lowndes County Black Panther Party. Located in Alabama’s black belt, SNCC’s Black Panther Party created a tent city in 1965 after a white landlord evicted forty black families, who worked as sharecroppers, when he found out that they registered to vote. Each tent had two beds, a fire, and a gun (Tent Cities, n.d.). Thus, Newton and Seal drew from the embodied

Unruly Bodies   301 performances of black authenticity because their goal was to rebuild the black community by replacing white-centered social structures with black-centered ones. The Panthers’ embodied performance was organized around figurative violence. It was an assemblage of existing black authenticity and an expression of masculinity that exaggerated toughness and military-like disciplined bodies. The Panthers used a uniform of black leather jackets, sunglasses, rigid postures, and openly and legally carried guns. Similar to the civil rights groups that preceded them, the Panthers held training classes and produced rules of conduct for members to follow. Some aspects of the training classes included political lessons in black nationalism and socialism. They established a minimum reading time of “two hours per day” for leaders so they would remain informed of the changing political climate. However, much of the training focused on the normative embodied practices that defined the BPP. The Panthers held training sessions on how to clean a gun, load a gun, and shoot a gun. (To the best of my knowledge, the Panthers did not produce any printed manuals on how to handle a gun, as they did for their rules of conduct. Primarily because learning how to use a gun requires a few simple movements, it is information that is transmitted through handson lessons.) The rules of conduct were called “The 8 Points of Attention” and outlined how Panthers should “speak politely” and “not hit or swear at people” or “take liberties with women” (Austin and Howard 2006). The SCLC’s citizenship schools also held lessons on the speaking styles, include pace and decibel levels, as well as how to interact with other blacks and with whites in public settings. The difference is found in the logic of racial integration embedded in good black citizenship versus the logic of autonomy embedded in black authenticity. The embodiment of good black citizenship communicated a singular racially nonthreatening black political agency to blacks and whites. The Panthers explicitly rejected good black citizenship, summing up King’s political project as: “So black people may protest, but not protect. They can complain, but not cut and shoot. In short, black people must at all costs remain non-violent” (Austin and Howard 2006). The Panthers ensured that their members were good to one another to create and strengthen ingroup bonds around the ideals of black authenticity. This necessitated retracing and hardening outgroup boundaries between the black community and whites, and the black community and the state. The BPP’s embodied performance was a way of communicating a new political identity to other blacks and as a means of recruiting them into the movement. The Panthers were aware that their embodied performances were played out to two audiences. Bobby Seale noted that in the early days, Newton knew that the state and whites would call the Panthers “ ‘Thugs and Hoodlums’ but the brothers on the block . . . they’re gonna say, ‘Them’s some out-of-sight thugs and hoodlums up there’ ” (Austin and Howard 2006, 10). In part, the Panthers’ figurative violent body filled the masculinity gap created in the black community, a gap that was traditionally filled by dignity acquired through participation in the labor market, which began abandoning urban areas in the 1960s. Figurative violence also transformed the victim into the hero, as it was incorporated in Panther narrative accounts of their encounters with the police. For example, stories of Newton’s confrontation with the police circulated between party

302   Randolph Hohle members and the local black community. One story recounted a planned rally to ­commemorate the fourth anniversary of the assassination of Malcolm X. The police showed up at the building that housed Ramparts, a former literary magazine, where Newton and other BPP members gathered. The police arrived with a television camera crew. Newton walked out of the building, past Ramparts’ editor Warren Hinckle, placed an index card on the camera’s lens, and told the cameraman to turn off the camera. When the cameraman attempted to grab Newton’s arm, Newton threw him up against a wall and punched him. A police officer reached for his gun as he approached Newton. Newton taunted the officer, telling the officer to “draw it, you cowardly dog” while he pumped a cartridge into his own shotgun. The officer backed down. This prompted Cleaver to mutter that Newton was “the baddest motherfucker to shit between two shoes” (Hillard 2009). On another occasion when the police pulled over Newton while he was driving his father’s car, Newton informed the police officer that he only had to give his identification, and then refused to hand over his or any of the other passengers’ guns to the police. As the situation escalated, Newton stepped out of the car and dropped a round of ammunition into his M-1 shotgun. The police shouted at black onlookers to walk away, but Newton shouted back. He told the black onlookers that they did not have to go anywhere as long as they remained at a reasonable distance. Seale watched in awe as Newton called the police swines, sharecroppers, and dogs, prompting him to famously describe Newton as “the baddest motherfucker that ever set foot in history” (Newton 1973; Seale 1996). It was not just that Newton stood up to the police. All black civil rights groups stood up to the police. It was how he did it. By being racially threatening to the police and causing the police to back down, it established a link between figurative violence and a desired outcome. When Newton was arrested and convicted of involuntary manslaughter for killing a police officer in October 1967, instead of hurting the movement, local chapters of the BPP rallied around the “Free Huey” campaigns to increase membership (Bloom and Martin 2013). The Panthers’ embodied performances against police brutality were a direct challenge to state power. The police are an important nexus between the prison and the state, whose primary role is conducting surveillance over dangerous and unruly bodies. However, police brutality represents the power of the sovereign. (This reading of Foucault’s account of the police reflects a reading of Foucault’s analytics of power as shifting forms of power—sovereign, discipline, and biopower—rather than as linear and competing paradigms of power [Foucault 2014]). Police brutality is not rational or calculating, nor does it take place in private. Police brutality is a spectacle: it targets the body, it is done in public, has witnesses, is ritualized, and is designed to reproduce state power through fear and intimidation. However, police brutality is also an intimate form of violence that typically occurs between men. Therefore, police brutality blurred the lines between public and private as it retraced the lines between white and black men. The physical pain from the billy club was paired with humiliation, “emasculation, criminalization, and death” (Curry 2017, 4). The mythos of figurative violence is that it resists power on multiple fronts, targeting abstract state power and concrete relations between black citizens and police.

Unruly Bodies   303 The Panthers’ practice of figurative violence became the point of state opposition to the movement. The state opposition to the BPP came from the federal government and the state of California. The reason was that the BPP challenged two key state monopolies: the monopoly of violence and the monopoly of social welfare. The BPP challenged the state’s monopoly of violence by conducting surveillance on the police. Armed with guns, they followed police cars on patrol and organized defense patrols to protect black neighborhoods from white police. This prompted local Oakland Representative Don Mulford to propose a change in laws that made it illegal to carry a loaded handgun in public. The California State Legislature passed the Mulford Act in 1967. It was a direct response to the Panthers’ practice of openly carrying guns. Members of the BPP, twentyfour men and four women, traveled south to the California State House in Sacramento to protest the bill. They entered the state assembly building armed with guns and were promptly escorted to a small room. They did not do anything illegal and adhered to the Panthers’ code of conduct designed to create a protective shield between them and the police. The lasting image was of Bobby Seale, armed and wearing his black beret, black leather jacket, and black pants, standing in front of the capitol building. According to Austin, this was how the Panthers were introduced to America (Austin and Howard 2006). Why the abrupt change in gun law? When legal gun ownership was linked with black authenticity, guns became threatening and changed the meaning of guns and the image of the gun owner. While black figurative violence was intended to frighten whites and keep the police away and out of the black community, it inadvertently created a contextual and interpretative framework for white state officials to change policy and criminalize black protest. Then governor of California Ronald Reagan stated that the Mulford Law would “work no hardship on the honest citizen” (Winkler 2011). Reagan used black figurative violence to distinguish the “honest citizen,” meaning white citizen, from blacks. Like his political counterparts in the Deep South at this time, Reagan and other conservatives figured out that it was easy to deregulate unwanted laws and liberal social policy as long as they could conjure up a bad and dangerous black body. The election of Richard Nixon in 1968 changed the political climate of the post–civil rights era. Nixon openly used a southern strategy to attract whites to the Republican Party. The racist southern strategy troupe originated with George Wallace’s presidential run in the 1964 Democratic primary elections. Wallace ran on a racist platform and managed to take a small but noticeable number of white voters from Johnson in Milwaukee, Wisconsin and Gary, Indiana. The Panthers’ racially threatening body provided an optimal embodied image of criminality that Nixon capitalized on. Nixon’s rhetoric of law and order was a racist nod to the ghetto revolts of the mid-1960s, and his feigned support for the renewal of the Voting Rights Act in 1970 was because it drew whites from the Democratic Party to the Republican Party (Hohle 2018, 60). Within this new political climate, the state’s response was to rally the criminal justice system against the BPP and criminalize black poverty, the politics of black authenticity, and black protests in general. J. Edgar Hoover called the Black Panthers the “greatest threat to internal security.” The FBI directed their COINTELPRO counterintelligence

304   Randolph Hohle program to eliminate the BPP. Of the 295 COINTELPRO programs that the FBI ­admitted to conducting, 233 were aimed at the BPP (Churchill 2005). The FBI created the Ghetto Informant Program (GIP), which ran from 1967 to 1973, to collect information on urban black communities (Weiner 2012). Indeed, the state’s response to the BPP was more severe than its response to any of the groups involved in the civil rights movement. Although the FBI defined white supremacist groups like the Ku Klux Klan as terrorist groups, the FBI did not target them nor did the state criminalize racist white organizations or white poverty.

Biopolitics and the People’s Free Medical Clinics The second and perhaps more significant threat to state power was the BPP’s People’s Free Medical Clinics (PFMCs). The PFMCs were the BPP’s primary political project starting in 1972. The PFMCs provided free health care, free breakfast to children, and other social services to the black community. In the early 1970s, the US health care system was organized around private hospitals and doctors, who charged fees higher than what poor blacks could afford and were located outside of black neighborhoods. A black nationalist group that provided social welfare and health care services further shifted black loyalties away from the state to the group making the immediate impact on the community. The PFMCs ironically connected the bodies of ordinary black citizens to the BPP and the state. In contrast to their cop watch programs and collective housing endeavors that emphasized autonomy, the Panthers’ PFMCs were part of a long-term strategy to rebuild the black community working with the state. Or at least, working with available public funds for medical care. This arrangement was not without risk. As Brown noted, working with the state meant “the risk of cooptation by the very medical institutions that it criticized and confronted” (Brown 2016, 1757). In part, the PFMCs were part of a longer history of black civil rights groups providing health care services to the black community. The PFMCs were also part of the development of community health centers made possible by LBJ’s War on Poverty and the 1965 Social Security Act that gave Americans Medicaid and Medicare (Nelson 2011). Whereas Johnson turned a cold cheek to the civil rights movement, his Great Society Program created an infrastructure for groups like the Panthers to organize community health centers. It was in the PFMC’s examination room, where guns rested on the walls next to the examination tables and political posters hung on the walls, where we find how the BPP exercised biopower. One exercise of biopower was between patient and doctor during the medical inspection. The doctor provided direct observation over the body through pediatric screening and testing for sickle cell anemia. Another exercise of biopower was how the physician’s body linked the black community with the medical profession and

Unruly Bodies   305 the state. The medical volunteers were also activists. The BPP instructed their volunteer physicians to always wear white coats to link the black community with mainstream medicine. The Panthers insisted that physicians look like physicians because it enhanced the legitimacy of the PFMCs. Making doctors look like doctors weakened boundaries between the black community and medicine. It replaced feelings of mistrust with trust. In this sense, the Panthers used the embodied physician–patient relations to establish the legitimacy of the PFMCs in the black community while also creating a legitimacy crisis for the state. The Panthers’ self-defense projects’ embodied expressions of violence and masculinity have a tendency to mask the work and contributions of black women in the BPP. For sure, black men were the public faces of the movement, served in almost all the leadership positions, and made and enforced rules that prohibited black women from dating outside the organization. Nevertheless, black women still made important contributions to the BPP. As Farmer noted, black women “reimagined the roles and responsibilities” of black women in the community health centers as work that was not traditional woman’s work (Farmer 2017). To put black women’s work in context, 42 percent of black women were still employed as domestic workers in the homes of elite whites in 1970s (Branch 2011). Spencer showed that it was black women who “experimented with truly collective organizational structures for health, childcare, and education” (Spencer 2016, 4). Black women organized feminist community centers that challenged the intersection of racism and patriarchy embodied by the white male physician. The BPP’s community centers offered rape counseling, access to birth control, including abortions, and lessons in midwifery and gynecology. Black women taught these skills as a form of self-inspection: a care of the self that was mobile, private, and done outside of the medical gaze of racistpatriarchal medicine. The state’s response to the Panthers’ PFMC project differed from its response to the Panthers’ self-defense projects. For one, the embodiment of the medical workers and patients was not wholly racially threatening. Physicians and nurses and hungry black children were not necessarily threatening, so police raids placed state legitimacy at risk. Because of the increases in local and federal police surveillance designed to break up the group and discredit the black nationalist project, the BPP deemphasized the expressions of figurative violence in favor of using the collective benefits of the community health centers to attract new members. The PFMC’s only link to being racially threatening was that it was part of the BPP. It was all the state needed. So instead of using police raids, local state, county, and municipal governments used public health agencies to perform random health checks at the clinics. They used regulatory agencies to deny licenses or make constant demands on the clinics to prove that they were in regulatory compliance, which was a very expensive and time-consuming process. They also persuaded local landlords to evict clinics (Nelson 2011, 111–113). Secondly, the state shifted its own biopolitical strategy from one that sought to incorporate challenges to the health care system to one that deregulated health care in order to stop the establishment of grassroots public health clinics. To illustrate, Nixon responded to the Panthers’ demands for more testing for sickle cell anemia by calling for

306   Randolph Hohle more money directing toward sickle cell research in his 1971 health address to Congress. By 1973, after the Panthers’ PFMCs were operating in select cities across America, Nixon and other conservatives supported and helped to pass the Health Maintenance Organization Act. Whereas conservatives once viewed health maintenance organizations (HMOs) as the equivalent of socialized medicine, the BPP’s use of public funds to establish their community health centers prompted a change in how white politicians and elites viewed HMOs. HMOs further privatized medicine and provided elite white men more control over the administration of health care.

Conclusion This chapter illustrated the unique contribution of an embodied approach to sociology’s subfields of political sociology and historical sociology. Embodiment captures how political actors’ and ordinary citizens’ understanding of politics is mediated through a myriad of embodied experiences with state institutions, including the police, social welfare, education, and medicine. If our understandings of politics and social policy were disembodied, charts, empirical studies, math, and logic would suffice to fix social problems and usher in the good society. Instead, the embodied attributes of any given performance can also produce sensations of attraction, repulsion, disgust, and fear. The struggle for equality is a corporeal one more than an ideological one. The body captures the point of a real connection between mobilization and the state’s response to a social movement. As shown in this chapter, the BPP’s use of figurative violence did two things: it challenged the basis for inclusion/exclusion, and it communicated a normative political project to multiple audiences. The connection point (the body) is the site of the political struggle, and each body provides a new connection point between a social movement and the state and thus produces distinct state responses. While it is obvious that the bodies of black women project different political meanings than the bodies of black men or white women or white men, the normative aspects of black authenticity made black bodies threatening to the state. To draw a larger logical inference, if the goal of a social movement is civic inclusion, the social movement will project a nonthreatening body to weaken ingroup/outgroup boundaries to try and create a sympathetic state response. If the goal is structural change, the movement will project a threatening body to harden ingroup/outgroup boundaries, but it will also increase the probability of repressive state responses to the movement. There is a high probability that any given social movement will contain competing factions struggling for inclusion or autonomy. Scholars and students interested in embodiment can draw from my approach to study how the body effects social and economic policy. The advantage is that it takes into account historical context, the normative aspects of group struggles, knowledge formation, and political outcomes. The types of research questions one could pursue include the following: How have states historically used the intersection of racial and gendered

Unruly Bodies   307 bodies to deregulate and administer social welfare policy? How has the historical variability of the embodiment of whiteness led to changes in immigration policy? How did medical movements historically use the sick body to change or deregulate public health and health care policy?

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308   Randolph Hohle Hillard, David. 2009. Huey: Spirit of the Panther. New York: Basic Books. Hohle, Randolph. 2009a. “The Body and Citizenship in Social Movement Research: Embodied Performances and the Deracialized Self in the Black Civil Rights Movement 1961–1965.” The Sociological Quarterly 50, no. 2: 283–307. Hohle, Randolph. 2009b. “The Rise of New South Governmentality: Competing Southern Revitalization Projects and Police Responses to the Black Civil Rights Movement, 1961–1965.” Journal of Historical Sociology 22, no. 4: 497–527. Hohle, Randolph. 2010. “Politics, the Body, and Social Movements.” Sociology Compass 4, no. 1: 38–51. Hohle, Randolph. 2012. “The Color of Neoliberalism: The ‘Modern Southern Businessman’ and Postwar Alabama’s Challenge to Racial Desegregation.” Sociological Forum 27, no. 1: 142–162. Hohle, Randolph. 2013. Black Citizenship and Authenticity in the Civil Rights Era. New York: Routledge. Hohle, Randolph. 2015. Race and the Origins of American Neoliberalism. New York: Routledge. Hohle, Randolph. 2018. Racism in the Neoliberal Era: A Meta History of Elite White Power. New York: Routledge. Johnson, Andrew. 2014. “Foucault: Critical Theory of the Police in a Neoliberal Age.” Theoria 61, no. 4: 5–29. Katz, Michael B. 1996. In the Shadow of the Poor House: A Social History of Welfare in America. 2nd ed. New York: Basic Books. Klawiter, Maren. 2008. The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism. Minneapolis: University of Minnesota Press. Lachmann, Richard. 2013. What Is Historical Sociology? New York: Polity Press. Latour, Bruno. 2005. Reassembling the Social: An Introduction to Actor-Network-Theory. Oxford: Oxford University Press. Lincoln, C. Eric. 1961. The Black Muslims in America. Boston: Beacon Press. Malcolm X. 1990. Malcolm X on Afro-American History. New York: Pathfinder. Massey, Douglas, and Nancy Denton. 1998. American Apartheid: Segregation and the Making of the Underclass. Cambridge, MA: Harvard University Press. Nelson, Alondra. 2011. Body and Soul: The Black Panther Party and the Fight Against Medical Discrimination. Minneapolis: University of Minnesota Press. Newton, Huey. 1973. Playboy interview. Playboy, May. Seale, Bobby. 1996. Seize the Time: The Story of the Black Panther Party. Baltimore, MD: Black Classic Press. Seidman, Steven. 2002. Beyond the Closet: The Transformation of Gay and Lesbian Life. New York: Routledge. Spencer, Robyn. 2016. The Revolution Has Come: Black Power, Gender, and the Black Panther. Durham, NC: Duke University Press. Tent Cities. n.d. Friends of SNCC memo. Social Action Vertical File, box 47, folder 6, located at the University of Wisconsin. Weiner, Tim. 2012. Enemies: A History of the FBI. New York: Random House. Winkler, Adam. 2011. “The Secret History of Guns.” The Atlantic, September. https://www .theatlantic.com/magazine/archive/2011/09/the-secret-history-of-guns/308608.

chapter 18

R ace , Phenot y pe , a n d Nationa lit y i n Br a zil a n d the U n ited State s Tiffany D. Joseph

There have been substantial developments in sociology of the body and race in recent decades. Sociology of the body has examined the importance of the body to individuals and the larger society in terms of gender, sexuality, aging, social status, and, increasingly, race (Frank 1990; Turner 1990; Waskul and Vannini 2006). This scholarship has also argued that discourses and institutions have a profound impact on individual bodies, which are part of macro social systems (Frank  1990; Giddens  1984; Waskul and Vannini 2006). Relatedly, the sociology of race has explored how macro-level structures and institutions ascribe unequal values and discriminatory treatment to differentially racialized bodies, which have generated disparities between individuals of different races (Bonilla-Silva 1997; Feagin 2000; Omi and Winant 1994). In the last decade, sociologists of race have begun to assess “race” globally, conducting comparative studies on various continents (Bailey  2009; Balogun  2012; Hoang  2014; Hordge-Freeman  2015; Kim  2008; Loveman  2014; Telles  2004). Many studies have focused on Brazil and the United States, the Americas’ largest countries, which are considered polar opposites in their race relations. While the United States represents the global epitome of racism, Brazil’s more flexible racial boundaries and lack of de jure racial discrimination represented—by comparison—a presumed racial paradise (Bailey 2009; Joseph  2015; Telles  2004). Yet, in each country, the racialized body that one ­inhabits remains crucially important for exploring manifestations of inequality and discrimination. This chapter examines one key question: how can perceptions of the racialized body enhance our understanding of the relationship between phenotype and nationality in Brazil and the United States? To examine this question, I use interview and ethnographic data gathered from seventy-three Brazilians in Governador Valadares (GV), Brazil’s largest immigrant-sending city to the United States. I explore the role of the racialized

310   Tiffany D. Joseph body—via skin color, hair, and body shape—in influencing how respondents ­conceptualize their nationality as Brazilian and that of Americans through their transnational exposure to the United States. I also examine how racialized notions of Brazilianness and Americanness facilitate discrimination in each context. Thus, I use these perceptions to demonstrate how merging sociological scholarship on the body and race can augment scholars’ and individuals’ understanding of the ways in which racialized phenotypes structure various societies.

The Body and Race in Sociology Most classical sociological theorists did not focus as much on the body in the early twentieth century, as biology informed race-based scholarly and public debates about human bodily differences (Mason  2013; McKee  1993; Morris  2015; Turner  1990). Scientists and laypersons believed that physical differences in skin color, hair texture, and other features signified inherent biological differences between people of different races (McKee 1993). These differences were used to justify positive and negative traits about various racial groups, yielding a racial hierarchy that justified a “natural order” of societal organization with the superior white group situated above other presumed inferior races (Feagin 2000; McKee 1993). Challenging that notion, social scientists like W. E. B. DuBois (1899), Franz Boas (1911), and Charles Cooley (1909) argued that any perceived social differences between individuals in different racial groups should not be attributed solely to biology. Instead, they argued that social and environmental factors— namely substandard living conditions and lack of access to education—produced disparate social outcomes. Thus, as extensive research on human remains eventually invalidated biological notions of race, sociological theory on race as a social construction proliferated, arguing that race yielded significant stratification in the twentieth-century United States (Feagin 2000; McKee 1993, Omi and Winant 1994). Although classical sociologists considered the body to be external to larger societal processes in the early twentieth century, the body has since taken on more importance in the sociological study of gender, sexuality, health, and disability (Mason  2013; Turner 1990; Waskul and Vannini 2006). Increasingly, sociology of the body has begun to incorporate more directly physical characteristics associated with race and ethnicity in theoretical and empirical analyses. Some scholars have examined how national ideals and culture influence performance and perception of the racialized body in global contexts (Balogun  2012; Hoang  2014; Kang  2010). For example, Balogun (2012) argues that Nigerian beauty pageants transmit gendered nationalist messages that reinforce a Nigerian national identity among co-nationals while at the same time conforming to international beauty standards. Similarly, Hoang (2014) indicates that Vietnamese sex workers utilize “competing technologies of embodiment,” where women produce, transform, or manipulate their bodies to symbolize their perception of national progress (517). Just as Balogun and Hoang’s research demonstrates that gender, ethnicity, and

Race, Phenotype, and Nationality in Brazil AND THE UNITED STATES   311 nationality are important sociopolitical constructions for understanding how the body is regarded, Mason (2013) argues that race, class, and gender intersectionality influence how bodies are viewed in society. Consequently, examining bodies from an intersectional standpoint may help scholars and the general public better understand how social stratification and inequality are generated and reproduced among different types of bodies. When incorporating race as part of an intersectional framework in sociology of the body, it is important to understand that sociologists of race define race as a social construction where people are assigned to different racial groups based on shared physical features like skin color and hair texture (Bonilla-Silva  1997; Feagin  2000; Omi and Winant 1994). Furthermore, the physical features ascribed to certain racial groups can vary across national contexts, which more sociologists of race have explored in recent decades (Bailey  2009; Hordge-Freeman  2015; Joseph  2015; Kim  2008; Ocampo  2016; Roth 2012; Telles 2014).

The Body and Race in Brazil Much of the recent research examining race transnationally has explored racial relations and inequality in Brazil and the United States (Bailey  2009; Hordge-Freeman  2015; Joseph 2015; Telles 2014). Brazil, like the United States, also had a legacy of European colonization, African slavery, and Indigenous conquest. But the social construction of race operated in a more nuanced way in Brazil relative to the United States due to three factors that shaped Brazil’s phenotypically diverse demographics (Telles 2004). First, most of the Portuguese who colonized Brazil were single men, which led to interracial (coerced) sexual unions with Indigenous and African-descended women. Second, slavery lasted until 1888 and, consequently, a sizeable African population was taken to Brazil, making it the largest African-descended country outside of Africa. Third, after slavery ended, there was no government-sanctioned de jure racial segregation similar to what unfolded in the United States. These factors are important for understanding the relationship between race, mestiçagem (or race mixing), and Brazilian nationality. Although eugenicists believed race mixing was detrimental to national development, Brazil and other Latin American countries sought to prove that mestiçagem was beneficial, producing a “Cosmic” race with the best characteristics of European, African, and Indigenous populations (Loveman 2014). However, these countries also heavily encouraged European immigration to “mix” with their populations and dilute undesirable elements (FitzGerald and Cook-Martín 2014; Loveman 2014). Brazilian anthropologist Gilberto Freyre (1933) developed the “racial democracy” ideology, which argued that Brazilians of all phenotypes had African ancestry that they should embrace. Consequently, Freyre believed racism could not exist in Brazil because it was hard to separate Brazilians into distinct racial groups as done in the United States.1

312   Tiffany D. Joseph Despite the prevalence of this ideology, much research has documented extensive inequality between darker and lighter Brazilians (Bailey 2009; Telles 2004, 2014). As much as Brazilians embrace their African ancestry, the ideal body type is fair skin with light eyes and straight hair (Hordge-Freeman 2015; Joseph 2015). The importance of the body and beauty in Brazil has been exported globally through Brazilian models like Giselle Bundchen and gendered beautification processes like the Brazilian Blowout for hair straightening and the Brazilian Butt Lift for enhancing one’s derriere. Brazilian women, with their trademark light-medium brown skin, slightly curly hair, and voluptuous physiques have long been considered some of the world’s most beautiful and sexual women (Goldenberg 2010). The focus on the body—how it looks, moves, and is adorned with clothing and accessories—is important in Brazilian culture (Adelman and Ruggi 2008; Goldenberg 2010).2 Because of the racial mixture in the population, one is considered more attractive with some color in their skin, but not too much, as the black body is stigmatized (Hordge-Freeman 2015; Telles 2004). Those with less than ideal body types, especially women, utilize technologies of embodiment to enhance their features by chemically straightening and lightening their hair, spending more or less time in the sun to change their skin tone, and changing their bodies through plastic surgery (Hordge-Freeman 2015). Although racial democracy ideology—in terms of perceived racial mixing—remains prevalent in contemporary Brazil, many Brazilians now acknowledge that racism exists and creates different life chances for “pardo” (census category for brown or racially mixed persons) and black Brazilians (Bailey 2009; Joseph 2015; Paschel 2016; Telles 2004). In recent decades, this acknowledgment has led to race-based social movements where black and pardo Brazilians have advocated for more social, political, and economic inclusion (Loveman 2014; Paschel 2016).

Data and Methods Data come from semistructured interviews conducted from October 2007 to October 2008 with seventy-three Brazilians—forty-nine return migrants and twenty-four nonmigrants—in GV, Brazil, which has historically been the country’s largest ­ ­immigrant-sending city to the United States.3 Though the city has a population of 260,000 residents, an estimated 15 percent are living in the United States, and 80 percent of residents have at least one relative or friend in the United States (Joseph  2015; Margolis 1998). The objective of most GV immigrants is to temporarily migrate to work, and then earn and save money to obtain upward economic mobility after returning to Brazil. Thus, GV’s economy is heavily dependent on US remittances, with an estimated $2.4 billion being sent in 2004 (Siqueira 2009). The social, economic, and cultural ties to the United States are so well known throughout Brazil that it has been nicknamed Governador Valadolares, as in US dollars (Joseph 2015). The aim of the project was to examine how the back-and-forth movement of Valadarenses (GV residents) between

Race, Phenotype, and Nationality in Brazil AND THE UNITED STATES   313 Brazil and the United States reshaped their understanding of racial categories, relations, and inequality in both countries. While the focus was primarily on return migrants— those who emigrated and returned—I also interviewed a comparison sample of nonmigrants, typically a relative of a return migrant who never emigrated, to better assess the influence of the US migration on racial conceptions among Valadarenses. I examined returnees’ retrospective racial conceptions before, during, and after migration focusing on (1) migration profile; (2) self-ascribed racial classification before, during, and after immigration; (3) perceptions of race relations in Brazil and the United States; and (4) experiences of racism in Brazil and the United States. I conducted interviews in Brazilian Portuguese that were 60 minutes on average. Interviews with returnees’ nonmigrant relatives explored (1) self-ascribed racial classification; (2) perception of race and life in the United States and Brazil; and (3) impact of US migration on GV and their relatives. I also took field notes on respondents’ phenotypes, which allowed me to make connections between respondents’ classifications and their ­phenotypes to further understand how Brazilian racial classification norms differed from those in the United States. Conducting research on the racialized body was sometimes challenging, given respondents’ use of various racial categories, their diverse phenotypes that did not easily align with certain racial categories, and respondents’ references to my racialized body in interviews (Joseph 2015). I audio-recorded and transcribed interviews for data analysis, using an inductive grounded theory approach to obtain the findings presented (Glaser and Strauss 1967). Using NVivo qualitative software, I utilized open and focused coding, which consisted of closely reading each transcript and developing a list of recurring themes related to the mention of the body (i.e., skin color) and nationality (Emerson, Fretz, and Shaw 1995; Strauss and Corbin 1998). I then reread each interview and coded each transcript line by line, placing all words, phrases, and sentences under the specific theme that matched the particular body attribute to being perceived as Brazilian or American by the respondent (Emerson et al. 1995). The return migrant sample consisted of twenty-six women and twenty-three men (forty-nine, total) between ages 20 and 57 whose average length of stay in the United States was 7.7 years. The majority lived on the East Coast and returned to GV between 1989 and early 2008. Socioeconomically, 84 percent had at least a high school diploma and working- or middle-class origins before migrating. Most respondents worked as housecleaners, babysitters, dishwashers, restaurant table bussers, construction workers, or as a combination of these jobs while living in the United States. The majority (61 percent) spoke little or no English, and 80 percent intended to return to Brazil. Although 63 percent of returnees obtained tourist or work visas before immigrating, only 25 percent acquired a green card or US citizenship. Most legally entered the United States but became undocumented by overstaying their visas. Among nonmigrants, I interviewed fourteen women and ten men who were an average age of 30 years. The majority completed high school (at least) and worked in sales or business occupations. In terms of racial classification using Brazilian census-derived categories, Figures 18.1 and  18.2 show how respondents racially classified themselves. Most people from the

314   Tiffany D. Joseph Amarelo (Yellow) 6%

Outro (Other) 8%

Branco (White) 43%

Pardo (Brown) 25%

Preto (Black) 18%

Figure 18.1.  Return migrants’ postmigration racial classifications.

Indígena (Indigenous) 4% Amarelo (Yellow) 8%

Outro (Other) 4%

Branco (White) 42%

Pardo (Brown) 34% Preto (Black) 8%

Figure 18.2.  Nonmigrants’ racial classifications.

Race, Phenotype, and Nationality in Brazil AND THE UNITED STATES   315 state of Minas Gerais classify as pardo on the census relative to other states (Joseph 2015). Just as in the United States, racial demographics in Brazil vary depending on region of the country (Telles 2004). Southern Brazil has a large white population due to the influx of early twentieth-century European immigration. Northeastern Brazil has a large black population, as that is where most African slaves were imported. Western Brazil near the Amazon is where much of the country’s remaining Indigenous population resides. South Central Brazil, which is where Minas Gerais is located, has a sizeable pardo population. This region is regarded by Mineiros (people from Minas Gerais) and Brazilians from other states as very racially mixed (Joseph 2015). Mineiros and Valadarenses are considered to have the ideal Brazilian body type: light-to-medium brown skin and straight or slightly curly black hair. I recruited participants using snowball sampling and local contacts such as Brazilian immigration researchers and emigration organizations. I also recruited a phenotypically diverse sample to account for the different racial perceptions and experiences respondents might have had in the United States and Brazil based on their phenotypes. As these data were collected among a small sample of respondents in GV, the findings are unique to these individuals and are not intended to be generalizable beyond this sample. However, their perceptions yield important insights into how the body is regarded racially and tied to nationality in Brazil and the United States, which is valuable for drawing connections between sociology of the body and race. As a light-skinned African American who was racialized as pardo and perceived as Brazilian (and not American because I was not white) by respondents, I also incorporate ethnographic observations that highlight the relationship between the body, phenotype, and nationality where appropriate (Joseph 2015).

Findings Respondents’ interviews revealed three findings about how the racialized body shapes their perceptions of nationality in Brazil and the United States. First, respondents perceived the pardo phenotype and category as symbolic of the typical Brazilian. Second, respondents relied on phenotype to make judgements about someone’s nationality. Finally, respondents perceived that having a certain phenotype and appearance could result in racial discrimination. I discuss the findings in this order as they coincide with respondents’ US-Brazil migration experiences.

The Typical Brazilian Is Pardo Given Brazil’s history of racial mixing, many respondents, return migrants and nonmigrants alike, believed that Brazilians are not purely one race. Forty-seven of seventythree respondents explicitly referred to Brazil as a racial democracy. Although respondents self-classified using a particular color category, many discussed the racial

316   Tiffany D. Joseph mixture in their own families to exemplify Brazilians’ African, Indigenous, and European ancestry. For this reason, most Brazilians self-classify as pardo or “moreno” (colloquial category for racially mixed persons), and these categories are representative of the “typical” Brazilian (Telles 2004, 2014). The physical characteristics ascribed to the pardo/moreno categories are in the middle of what American race scholars consider a black-white binary: medium brown skin with long slightly curly or straight dark hair and dark eyes. A pardo nonmigrant named Isaac shared these exact sentiments: Because here in Brazil, there is much mixing. Because of this mixing, there exist people who are neither light nor very dark. So they’re in the middle category, a mixture of races, not on one side or the other.

Like Isaac and other respondents, a return migrant named Felipe used a common Brazilian phrase to refer to the prevalence of black ancestry among the population: “todo tem um pé na cozinha” or “everyone has a foot in the kitchen.” Felipe has medium brown skin that is similar to mine, but he self-classifies as white in Brazil: We all have a foot in the kitchen because my dad was a little lighter than you and my mom is very white. So I consider myself white, but I have a little bit, I have a foot in the kitchen.

While this phrase acknowledges the mestiçagem of Brazil, it also incorporates the historical image of black slaves as domestic laborers “hidden” in the kitchen while their white owners presided over the house (Amorim 2010; Htun 2005). The phrase also presumes that all Brazilians have black ancestry (hidden under the surface) regardless of one’s external phenotype, an idea discussed by Gilberto Freyre (1933), who conceived the racial democracy ideology: Every Brazilian, even the light skinned fair haired one carries about him on his soul, when not on soul and body alike, the shadow or at least the birthmark of the aborigine or the negro . . . in everything that is a sincere expression of our lives, we almost all of us bear the mark of that influence.  (278)

Like Freyre, some respondents—especially return migrants—felt that having racially mixed ancestry, despite looking white, made Brazilians physically different from other nationalities. Lorena, a fair-skinned return migrant with straight, dyed blonde hair and green eyes, shared: My color here in Brazil, I am classified as white. Now we know that in Brazil there is a lot of racial mixture and no one is totally white here. There are many people [who look] completely white but [have] black blood. The white [Brazilian] is very different, huh? The Brazilian has a body shape that is different, has the shape [physique]

Race, Phenotype, and Nationality in Brazil AND THE UNITED STATES   317 of the black. So I am classified as white, but I know very well that in my family we have African, black [ancestry].

Lorena attributes the “Brazilian physique” to the African ancestry that presumably many Brazilians have. This notion of Brazilianness tied to phenotype is also important for understanding how Brazilians frame their national identity based on the bodies they are in, with the pardo phenotype being the most salient. But individuals with phenotypes that fall at either end of the black-white binary are regarded differently. Lighter/whiter Brazilians are considered more attractive and more structurally advantaged than darker/blacker Brazilians who are at the opposite end (Telles  2004,  2014). Brazilians with darker phenotype are also highly stigmatized and rarely depicted in high social status positions in Brazilian movies, soap operas, or commercials (HordgeFreeman 2015; Telles 2004). For my respondents who migrated to the United States, being at the lighter end of the Brazilian black-white binary would be a rude awakening for understanding how they would be situated within the US racial hierarchy.

Phenotype and Nationality Assumptions: Brazilian, American, or Latino Migration transformed how most return migrants racially classified themselves ­pri­ma­rily because the “one-drop rule”—having one drop of black blood—functions differently in each country. Whereas in Brazil racial mixture can allow one to move out of the black category, the same mixture has historically resulted in exclusion from the white category in the United States. This was a shocking experience for many return migrants who had considered themselves to be white before migrating. Black migrants, already accustomed to experiencing marginalization and discrimination in Brazil, found that they could pass for African American. For those who were pardo, they (and their white coethnics) learned that their phenotype and nationality placed them in the interchangeably used Latino and Hispanic categories. For migrant respondents, the bodies they inhabited as Brazilians were racialized very differently in the United States. One of the biggest difficulties return migrants experienced in the United States was that the black and white categories meant different things in each country. While the white category was more fluid in Brazil, it was more exclusive in the United States. Conversely, the black category in Brazil was typically reserved for individuals with very dark skin tones. In the United States, the black category has traditionally applied to those with any African ancestry vis-à-vis the one-drop rule. Renata, a return migrant with skin slightly lighter than mine, had always thought of herself as white, but: When I arrived [in the United States], I felt that I wasn’t as white. I didn’t think I was very white, I felt like I [my skin color] was yellow.4 Because I saw that there were white people and black people. I saw that the American would not see me as white.

318   Tiffany D. Joseph When I asked Renata how she saw racially classified herself in the United States, she responded: Yellow because I was not black. You [referring to me], here in Brazil, you are mulatto. And you know what mulatto [half black and half white is for us [Brazilians]? It’s a fine/thin nose. The black [nose] is bigger.

Renata discusses her and my race as related to skin color and nose shape, making distinctions between white, black, yellow, and mulatto categories in each country. The different phenotypes attached to these categories in Brazil and the United States similarly shaped return migrants’ perceptions of Brazilianness and Americanness. Although respondents felt the white category in Brazil was more fluid, they believed the white category in the United States only applied to individuals with very pale skin, straight blonde hair, and blue eyes. In many interviews, respondents also conflated Americanness with whiteness, implying that to be American, one had to fit into this limited perception of whiteness. This is why most respondents did not believe I was American. Camila, a return migrant, expressed a very limited perception of Americans as white: I had heard [before immigrating] that the United States only had whites with blue eyes. The United States didn’t have blacks; it was a lack of information. The American race is white, and if we saw a white person, we assumed he was American. This was the image that we had of the United States.

Although Camila became more aware of the different types of people living in the United States after she migrated, her quote illustrates the pervasive perception that Americans are mostly white which is transmitted through global media outlets to other countries. This perception also had a profound impact after migration in forcing Brazilians of various colors—whites included—to realize that being in a racially mixed body and from Latin America was grounds for exclusion from the US white racial group. Another challenge Brazilian migrants experienced in terms of race, phenotype, and nationality in the United States was negotiating their positionality in relation to the Latino and Hispanic categories. The Brazilian phenotype was racialized as non-white, foreigner, and (at times) undocumented in the United States. While Brazilians are from Latin America, they are not Spanish speaking, which makes the Hispanic label inappropriate. But, given that Brazilians are Portuguese speakers and feel culturally distinct from other Latin Americans, they also have an ambivalent relationship to the Latino label, usually preferring it over the Hispanic category but not over their Brazilian nationality (Joseph 2015). Although most current immigrants have Latin American ancestry and Latinos are the largest ethnoracial minority, this group is highly stigmatized. As a result, Brazilian migrants socially distanced themselves from Latinos. Brazilian migrants also felt that white Americans treated them better after learning they were Brazilian and not Hispanic or Latino, despite the fact that Brazilians’ bodies were often racialized and placed in those categories. My interview with a morena migrant named Carolina highlights this point:

Race, Phenotype, and Nationality in Brazil AND THE UNITED STATES   319 I worked in a factory in Elizabeth [New Jersey]. Even though he [my coworker] was American, he was of a Hungarian descent. He was white, with really blonde hair and light eyes. And he never talked to me because he thought I was Hispanic. And he ignored me until he discovered that I was Brazilian. One day, I told him, “I am not Hispanic.” He asked if I was Colombian and I said, “I am not Hispanic, I am Brazilian.” That completely changed everything for me; he doesn’t like, he did not like Hispanics. So, he came and showed me some photos of Rio de Janeiro, lots of things, and became my friend.

Carolina’s quote demonstrates how her white American coworker conflated nationality and phenotype for all “Hispanics” and used judgements about this group’s physical features to influence his social affinity to this group. However, in asserting her Brazilian identity, Carolina simultaneously defies and confirms her coworker’s negative assumptions about Hispanics, using his dislike of Hispanics and admiration of Brazilians to transform his perception of her. Though her phenotype did not change in this interaction, the way her nationality was racialized by her white coworker did. He no longer saw Carolina as Hispanic and subsequently befriended her. This anecdote also illustrates how different Latin American nationalities can be perceived and treated differently from simply identifying as a different nationality. Another way that Brazilian migrants recognized that their Brazilianness distinguished them from other “Latinos” and Americans was through the hypersexualization of Brazilian culture in the United States. Respondents recounted incidents in which Americans would make references to Brazilian culture that exuded the physicality of Brazilians’ bodies, such as Carnaval do Brasil (Carnival) and soccer. Amanda, a white migrant, shared how this occurred when she was cleaning a white American’s house: Well, when you work, some people they have no idea of, what is Brazil. There was a guy, I was at his house to clean and he had a magnet. And there was a butt [on it] and there was written Rio de Janeiro, Brazil. And he said, “Oh look, Brazil, Rio de Janeiro, yes Brazil Carnaval bumbum [butt].” So, I think when they talk about Brazil, they think about sex. That’s sad.

Amanda’s anecdote illustrates how the body and nationality can be inextricably tied together through stereotypes regarding the sexuality of Brazilians—especially women— that made her uncomfortable. But my interview with Henrique revealed that despite being Brazilian, he was concerned he would be racialized as a terrorist. With light brown skin and shortly cut black curly hair, Henrique is considered white in Brazil. But he felt that this features also looked Middle Eastern in the United States: When I arrived there, I saw that, I was afraid not only because of my color, but I look more Arab, [like] people from the Middle East. And I was mistaken three times of being Moroccan there. My fear was more about looking Arab than anything else. I was fearful because Americans are very afraid of people from the Middle East, and

320   Tiffany D. Joseph I have a more Arab than Brazilian appearance. For Brazilians, Moroccans, Arabs, and Muslims are all the same. So I was afraid, three times I was mistaken for a terrorist. So I wore Latino clothing, baseball caps [that said] Puerto Rico. I would have my hair cut like Hispanics did. I learned Spanish.

Rather than socially distancing himself from Latinos, Henrique embraced that identity and culture as a protective measure to avoid being perceived as a terrorist due to the body he inhabited. He was one of the few migrants to openly embrace a Latino identity while most others resisted it.

The Importance of Boa Aparência and Discrimination in Brazil and the United States Another aspect of the relationship between the body and nationality for return migrants and nonmigrants was the importance of “aparência” or appearance in Brazil relative to the United States. Research exploring the manifestation of racism in Brazil has found that Brazilians believe social class is more important than race when it comes to discrimination (Telles 2004; Winddance Twine 1998). However, return migrant respondents used their experiences of racialization in the United States as a frame of reference for interpreting class-based discrimination in Brazil post migration. A prevalent theme among return migrants and nonmigrants in discussing this class-based discrimination was the term boa aparência, meaning to have a good appearance. Many respondents used the term to highlight how much value Brazilians place not only on phenotype or physical appearance but also on one’s aesthetic appearance as indicated by how one dresses. Brazilians use the physical and aesthetic appearance of the body to provide clues about a person’s socioeconomic status and how to treat racialized and classed bodies in Brazil. As discussed earlier, whiter Brazilians are considered more physically attractive, but they are also provided with structural advantages in the job and marital markets relative to pardo and black Brazilians (Adelman and Ruggi  2008; Hordge-Freeman  2015; Telles 2004, 2014). White physical features are most often associated with having boa aparência. In the not so distant past, employers would openly encourage applicants with boa aparência to apply for positions, while implicitly signaling that those without need not apply (Bento  2000; Damasceno  2011; Paim and Perreira  2010). While this is no longer done overtly in job advertisements, the informal practice continues ­ (Damasceno 2011; Paim and Perreira 2010). For Rosangela, a dark-skinned nonmigrant, lacking boa aparência is a reality: In terms of work, the black has more difficulty finding a good job compared to a white person. Here I can be capable, [but] between me and a blonde, the blonde will get the job even if she doesn’t have the same capability as me. Because here, appearance in the majority of places comes first. Just like the story I told you,

Race, Phenotype, and Nationality in Brazil AND THE UNITED STATES   321 they [employers] don’t put “good appearance” in the job ad, [but] at any rate between a black and a white, the white will have advantages in relation to work or anything else.

Respondents who mentioned boa aparência discussed it in terms of the intersection of race and social class in Brazil, with black Brazilians being marginalized primarily because of their class status and racial phenotype. Lorena, quoted earlier, explained that the focus on boa aparência is actually a form of racism: Regarding the news report I told you about, it is not only the question of color. I saw in this report that also used the fact that a person is poor, and lives in a favela (Brazilian shanty town). So racism can be in relation to social class, too. [But] it [race] is more visible because social class, because a well-dressed black person is well attended to in a store. But there are stores where there is not a black person working; there are companies that I worked for, where, the person has boa aparência. What’s considered boa aparência is a white person, not a black person. You will never see, in a big company, a black manager. Even today in Valadares, you will not see a black person working in a boutique.

Lorena also mentions that boa aparência can also influence the type of service a person receives in stores, particularly black Brazilians. Implied in her quote is that not being dressed well can result in a black person receiving substandard service. During my time in Brazil, I experienced this myself. When I was well dressed, had straightened hair, and asked for assistance in my foreign-accented Portuguese (which usually resulted in attendants asking about my nationality), store attendants were quick to assist me, assuming I was a well-to-do American with lots of money to spend in their establishments. However, when I went to the same establishments casually dressed with my tightly curled hair, I was often ignored, illustrating how boa aparência yields an unspoken but understood code for social treatment in various settings. Thus, respondents recognized this relationship between phenotype, social class, and appearance and how it disadvantaged black and pardo Brazilians relative to white Brazilians. But return migrants’ experiences abroad made them realize that the concept of boa aparência was more salient in Brazil than in the United States. This was also evident in returnees’ evaluations of black Americans as more attractive than black Brazilians due to black Americans’ higher socioeconomic status and visibility in US pop culture (Joseph 2015). As a result, the context where Brazilians were situated shaped how they perceived the intersection between the body, race, social class, and appearance.

Discussion and Conclusion Cumulatively, my findings show how much theoretical leverage there is to be gained from merging the literatures from sociology of the body and race. With a more explicit focus on race, sociology of the body can better demonstrate how race—like gender and

322   Tiffany D. Joseph other social constructions—is derived from and experienced in particular bodies. Likewise, minimal incorporation of the actual body in the sociology of race misses a rigorous analysis of how the physical differences used to determine one’s race shape a range of social outcomes and lived experiences. My findings regarding respondents’ perceptions of Brazilianness and Americanness as tied to phenotype illustrate how Brazilians use the racialized body to assess racial and nationality differences. This finding is tied to early twentieth-century notions of race as biologically determined, rather than as a social construction in the sociology of race literature. But a key difference between my Brazilian respondents and the early twentiethcentury scientists who believed race was biological was that Brazilians’ embraced racial mixture as a benefit, rather than a detriment, to their society. Unlike those early twentieth-century scientists, Brazilian elites and the general population also did not overtly claim the racial superiority of one group over any others. However, at the same time, Brazilian lawmakers implemented policies encouraging European immigration to whiten its racially mixed population. These unorthodox perceptions of racial mixture became the basis for anthropologist Gilberto Freyre’s racial democracy ideology in Brazil. Yet, despite Brazilians’ positive views of mestiçagem, whiter Brazilian bodies have been implicitly more valued than pardo and black Brazilian bodies (Hordge-Freeman 2015; Joseph 2015; Telles 2004). Thus, the racialized body has been important for assessing belonging and inclusion in the nation historically and in the present. Race theorists have also argued that race can be used to structure societies with social, economic, and political consequences (Bonilla-Silva 1997, 2004; Feagin 2000; Omi and Winant 1994). Omi and Winant’s (1994) “racial formations” and Bonilla-Silva’s (1997) “racialized social systems” and “Latin-Americanization thesis” (2004) posit that racialized bodies are arranged in hierarchies in societies where race-based social inequality can develop and be institutionalized. However, most race theory and scholarship does not delve into the particularities of those phenotypes and how racial categories and meanings are ascribed to those phenotypes. My findings demonstrate that nuanced distinctions in skin color and other physical features are very important for Brazilians in understanding their racialized contexts. Although more sociologists of race have started to incorporate the racialized body into their analyses, the theoretical and empirical contributions of the subfield could be enriched from bringing in the body even more, particularly in transnational contexts (Glenn 2015; Monk 2015; Roth 2012). With regard to sociology of the body literature, my findings indicate that one cannot assess race without paying close attention to the body, which is incredibly important in Brazilian culture. My interview data and ethnographic observations living in Brazil provided evidence that perceptions of race and the body are also gendered. Brazilians— women especially—were highly involved in Hoang’s “competing technologies of embodiment,” using boa aparência to determine other people’s and their own value in the social order. I also observed this practice in beauty rituals that many Brazilian women engage in in salons and aesthetician shops where women alter their bodies to improve their appearance (Hordge-Freeman  2015; Joseph  2015). For hair, this often meant chemically straightening or intensely blow-drying it to achieve straight hair with

Race, Phenotype, and Nationality in Brazil AND THE UNITED STATES   323 lots of body and no curls. This also meant dyeing one’s darker hair to make it lighter or have highlights. For the body, technologies of embodiment consisted of engaging in rigorous physical activity, “weight-loss” massages, or plastic surgery to achieve a firm voluptuous Brazilian body. Because of Brazil’s sunny tropical climate, people acknowledge that the sun will make their skin darker and correspondingly their race (Joseph 2015). But Brazilians, women with lighter skin tones especially, wear clothing that shows their tan lines so others will know what their lighter natural skin tone is. In these ways, Brazilians rely on “technologies” to manipulate how others will perceive and subsequently treat their racialized bodies. Relatedly, these technologies, or the extent to which Brazilian women of all colors can engage in them, differentially shape societal perceptions of beauty, marriageability, and sexuality for black, pardo, and white women. Overall, research suggests that despite Brazil’s reputation of mestiçagem, interracial marriage rates are around 30 percent, meaning that most Brazilians are married to people of the same color (HordgeFreeman  2015; Telles  2004). Nevertheless, Brazilians’ valuation of whiter physical features as beautiful means that Brazilians prefer to marry whiter/lighter partners if they can (Burdick 1998; Hordge-Freeman 2015; Telles 2004). White women are most privileged in the marriage market. In terms of sexuality, pardo women are exotified as “the embodiment of Brazilian sexuality and pleasure,” and black women are considered ideal sexual partners because of their “primitive sexual impulses” (Hordge-Freeman 2015, 58; Telles 2004, 190). But pardo women are highly preferred as marriage partners over black women, who are most disadvantaged in the dating and marriage market. Thus, recognizing their societal disadvantage, it can be argued that pardo and black women may employ these technologies to enhance other Brazilians’ perceptions of their beauty and their marriageability. Brazilian migrants also used these technologies in the United States to influence how Americans would perceive and then interact with Brazilian migrants, as especially indicated by Henrique, in regards to the construction of the white, black, Latino, and Hispanic categories. Henrique actively embraced the Latino category, modifying his aesthetic appearance to prevent being racialized as a Middle Eastern terrorist. Furthermore, some migrants believed living in the less sunny United States made them racially lighter, which also influenced their US racial classifications and social position relative to other Latinos (Joseph 2015). The findings also demonstrate the relevance of sociology of the body for understanding Brazilians’ perceptions of race, phenotype, and nationality with regard to intersectionality (Mason  2013). Henrique’s anecdote, read in combination with those from Carolina and Amanda, also indicates gendered reactions to navigating race, nationality, and the body. One has to wonder if Carolina and Amanda had been men and their white coworkers were women, how being in different gendered bodies would have affected those interactions. Relatedly, if Henrique had been a Brazilian woman, one also has to wonder if he still would have been racialized as Middle Eastern and adapted “Latino” culture and dress. For the women, there was more social distancing from the Latino label. My findings illustrate how Brazilian (gendered) bodies are read and interacted

324   Tiffany D. Joseph with differently based on the context (i.e., work, daily life) and country in which they are situated. In terms of race, Henrique and Amanda are considered white in Brazil, while Carolina is morena, but they were racialized in unique ways in relation to the Latino category in the United States. And that racialization was also tied to the bodies they inhabited. The findings presented also highlight the relevance of transnational research for pushing sociologists of race and the body to consider how racialized bodies are regarded in international contexts. This is very important now given prevalent migration between the Global North and South, which has led to more different types of racialized bodies and nationalities coming into contact. Situating sociology of race and the body transnationally will also be useful for understanding how race-based inequalities can develop and affect bodies differently at individual, interpersonal, institutional, and societal levels. In closing, I briefly address how the qualitative methods for this chapter provided unique insights to studying bodies in different racialized societies, particularly for understanding how nuances in phenotype influence individuals’ experiences. After entering and interacting with Brazilians in GV, I learned that race measures from previous studies could not be easily applied there. My qualitative skills and Portuguese proficiency were crucially important for learning how Brazilians ascribe meaning to the racialized body, which improved my interview protocol. My body also became part of the research: respondents used my phenotype to discuss their own. But these methods were not without challenges. It was sometimes difficult to assess consistency in respondents’ racial classifications because they changed over time and across national contexts. I also adopted Brazilian racial classification norms to better understand my respondents’ perspectives. Nevertheless, qualitative research accentuated the complexity of the social meanings ascribed to racialized bodies in transnational contexts and should be used in future studies of the body and race.

Notes 1. Freyre developed the racial democracy ideology after living in the segregated American South and seeing how black Americans were treated. Compared to the United States, he perceived Brazil’s race relations as a “democracy” (Joseph 2015). 2. Brazil was number 2 after the United States for highest number of plastic surgery ­procedures in 2015 (http://www.businessinsider.com/here-are-the-vainest-countries-in -the-world-2015-8). 3. I also refer to return migrants as “returnees.” 4. “Yellow” is the census category for Asian-descended individuals in Brazil.

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Race, Phenotype, and Nationality in Brazil AND THE UNITED STATES   325 Amorim, Laura Maia. 2010. “Dilemas Na Tradução De Muse & Drudge (‘Musa E Mula’), De Harryette Mullen: Negritude, Dissonância E Miscigenação.” Terceira Margem 23: 139–551. Bailey, Stanley R. 2009. Legacies of Race: Identities, Attitudes, and Politics in Brazil. Palo Alto, CA: Stanford University. Balogun, Oluwakemi  M. 2012. “Cultural and Cosmopolitan: Idealized Femininity and Embodied Nationalism in Nigerian Beauty Pageants.” Gender & Society 26, no. 3: 357–381. Bento, Maria. 2000. “A Raça E Gênero No Mercado De Trabalho.” In Trabalho E Gênero: Mudanças, Permanências E Deasfios, edited by M.  I.  B.  d. Rocha, 295–307. São Paulo: Editora 34. Boas, Franz. 1911. The Mind of Primitive Man. New York: MacMillan. Bonilla-Silva, Eduardo. 1997. “Rethinking Racism.” American Sociological Review 62, no. 3: 465–480. Bonilla-Silva, Eduardo. 2004. “From Bi-Racial to Tri-Racial: Towards a New System of Racial Classification in the USA.” Ethnic and Racial Studies 27, no. 6: 931–950. Burdick, John. 1998. Blessed Anastacia: Women, Race, and Popular Christianity in Brazil. London: Routledge. Cooley, Charles Horton. 1909. Social Organization. New York: Charles Scribner’s Sons. Damasceno, Caetana Maria. 2011. Segredos Da Boa Aparência: Da “Cor” À Boa Aparência No Mundo Do Trabalho Carioca (1930–1950). Rio de Janeiro: EDUR, UFFRJ. DuBois, W. E. B. 1899. The Philadelphia Negro. New York: Schocken Books. Emerson, R. M., R. I. Fretz, and L. L. Shaw. 1995. Writing Ethnographic Fieldnotes. Chicago: University of Chicago. Feagin, Joe. 2000. Racist America: Roots, Current Realities, and Future Reparations. New York: Routledge. FitzGerald, David, and David Cook-Martín. 2014. Culling the Masses: The Democratic Origins of Racist Immigration Policy in the Americas. Cambridge, MA: Harvard University Press. Frank, Arthur W. 1990. “For a Sociology of the Body: An Analytical Review.” In The Body: Social Process and Cultural Theory, edited by Mike Featherstone, Mike Hepworth, and Bryan S. Turner, 36–52. London: Sage. Freyre, Gilberto. 1933. Casa Grande E Senzala. Rio de Janeiro: Editora Record. Giddens, Anthony. 1984. The Constitution of Society. Berkeley: University of California Press. Glaser, Barney G., and Anselm Strauss. 1967. The Discovery of Grounded Theory: Strategies for Qualitative Research. Edison, NJ: Aldine Transaction. Glenn, Evelyn Nakano, ed. 2015. Shades of Difference: Why Skin Color Matters. Palo Alto, CA: Stanford University Press. Goldenberg, Mirian. 2010. “The Body as Capital: Understanding Brazilian Culture.” Virtual Brazilian Anthropology 7: 220–238. http://www.redalyc.org/pdf/4069/406941909013.pdf. Hoang, Kimberly Kay. 2014. “Competing Technologies of Embodiment: Pan-Asian Modernity and Third World Dependency in Vietnam’s Contemporary Sex Industry.” Gender & Society 28, no. 4: 513–536. Hordge-Freeman, Elizabeth. 2015. The Color of Love: Racial Features, Stigma and Socialization in Black Brazilian Families. Austin: University of Texas Press. Htun, Mala. 2005. “Racial Quotas for a ‘Racial Democracy’.” NACLA Report on the Americas 38, no. 4: 20–27. Joseph, Tiffany. 2015. Race on the Move: Brazilian Migrants and the Global Reconstruction of Race. Palo Alto, CA: Stanford University Press. Kang, Millian. 2010. The Managed Hand: Race, Gender, and the Body in Beauty Service Work. Berkeley: University of California Press.

326   Tiffany D. Joseph Kim, Nadia. 2008. Imperial Citizens: Koreans and Race from Seoul to LA. Palo Alto, CA: Stanford University Press. Loveman, Mara. 2014. National Colors: Racial Classification and the State in Latin America. New York: Oxford University Press. Margolis, Maxine L. 1998. An Invisible Minority: Brazilians in New York City. Boston: Allyn and Bacon. Mason, Katherine. 2013. “Social Stratification and the Body: Gender, Race, and Class.” Sociology Compass 7, no. 8: 686–698. McKee, James  B. 1993. Sociology and the Race Problem: The Failure of Perspective. Urbana: University of Illinois Press. Monk, Ellis. 2015. “The Cost of Color: Skin Color, Discrimination, and Health among African Americans.” American Journal of Sociology 121, no. 2: 396–444. Morris, Aldon. 2015. The Scholar Denied: W.E.B. DuBois and the Birth of Modern Sociology. Berkeley: University of California Press. Ocampo, Anthony. 2016. The Latinos of Asia: How Filipino Americans Break the Rules of Race. Palo Alto, CA: Stanford University Press. Omi, Michael, and Howard Winant. 1994. Racial Formation in the United States: From the 1960s to the 1990s. New York: Routledge. Paim, Altair dos Santos, and Marcos Emanoel Pereira. 2010. “Estereótipos, Boa Aparência, E a Secretária Executiva.” Passo Fundo 6: 29–40. Paschel, Tianna. 2016. Becoming Black Political Subjects: Movements and Ethno-Racial Rights in Colombia and Brazil. Princeton, NJ: Princeton University Press. Roth, Wendy. 2012. Race Migrations: Latinos and the Cultural Transformation of Race. Palo Alto, CA: Stanford University Press. Siqueira, Sueli. 2009. Sonhos, Successo, E Frustações Na Emigração De Retorno: Brasil/Estados Unidos. Belo Horizonte, Brazil: Argvmentvm Editora. Strauss, Anselm, and Juliet Corbin. 1998. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. New York: Sage. Telles, Edward  E. 2004. Race in Another America: The Significance of Skin Color in Brazil. Princeton, NJ: Princeton University Press. Telles, Edward, and Project on Ethnicity and Race in Latin America. 2014. Pigmentocracies: Social Science Findings from the Project on Ethnicity and Race in Latin America. Chapel Hill: University of North Carolina Press. Turner, Brian S. 1990. “Recent Developments in the Theory of the Body.” In The Body: Social Process and Cultural Theory, edited by Mike Featherstone, Mike Hepworth, and Bryan S. Turner, 1–35. London: Sage. Waskul, Dennis, and Phillip Vannini, eds. 2006. Bodies/Embodiment: Symbolic Interaction in the Sociology of the Body. Burlington, VT: Ashgate. Winddance Twine, France. 1998. Racism in a Racial Democracy: The Maintenance of White Supremacy in Brazil. New Brunswick, NJ: Rutgers University.

chapter 19

The A esthetic L a bor of Eth nogr a phers Kjerstin Gruys and David J. Hutson

Since the sociological turn toward embodiment (Turner 1984), scholars have increasingly noted how their own bodies impact (and are impacted by) the research process. Such considerations highlight how appearance, gender presentation, and perceived race or social class can influence interactions while conducting ethnography. For instance, in his study of Chicago housing developments, Venkatesh (2002) acknowledges that his clothing signaled a poverty level similar to those he was studying. As one of his participants explains: “ ‘If you struggling, you struggling. And, look at you, hair all messed up, you ain’t had no new clothes since I known you. You poor, just like us’ ” (100). This example illustrates the ways that ethnographers become conscious of their appearance, particularly if it advantages or disadvantages them as researchers. However, turning a critical eye on such moments of ethnographers’ bodies suggests that these are not only methodological considerations of access and rapport, but embodied strategies that may be conceptualized as “aesthetic labor.” The concept of aesthetic labor (Warhurst et al. 2000) describes how workers’ appearances and mannerisms are commodified in the labor market—styles of dress and pres­en­ta­tion that become incorporated as a condition of employment in hiring, retention, or promotion. As Witz, Warhurst, and Nickson (2003) explain, “distinct modes of worker embodiment are corporately produced as aesthetic labourers are ‘made up’ [. . .] to embody the aesthetics of service organization” (37). Although aesthetic labor has traditionally been studied through employer–employee relations in the interactive service sector, this description also applies to the labor of scholars conducting research— particularly in-person methods, such as during ethnography. Indeed, because research is an expected aspect of employment for most scholars in academia, alterations to appearance or style when collecting ethnographic data constitute forms of aesthetic labor. Yet few methodological discussions acknowledge how academic research specifically involves aesthetic labor.

328   Kjerstin Gruys and David J. Hutson In this chapter, we suggest that the concept of aesthetic labor captures the embodied practices of ethnographers, in particular, and highlights the multifaceted forms of labor involved in this method of research. To explore how ethnographers perform aesthetic labor, we utilize a comparative case method of autoethnographic accounts to analyze two research sites: a women’s plus-size clothing store and a coed retail gym. In the clothing store, Kjerstin (Gruys 2012) took on the role of an employee and interacted with customers on the sales floor, while in the gym, David (Hutson 2013, 2016) became a client by working out one on one with a personal trainer. These differing, but complementary, perspectives provide insight into aesthetic labor on both sides of the interactive service relationship. Through our analyses, we observe that both of us engaged in aesthetic labor prior to entering our field sites, and again throughout data collection, as we adapted to the aesthetic expectations of our sites—a process we describe as balancing blending in versus sticking out. We further observe that our successful accomplishment of aesthetic labor depended on our specific social locations and embodiment; at our field sites gender and body size were the most salient elements of our embodiment. We draw on our narratives to consider how embodiment may compound inequalities, and we argue for greater attention to the ways that ethnographic research should be conceptualized through the lens of labor—a lens that makes clearer how academic work is structured by the same intersectional inequalities prevalent in most occupational fields.

Embodiment, Aesthetic Labor, and Inequality The concept of aesthetic labor developed as an extension of Hochschild’s (1983) “emotional labor,” where employees must work to exhibit the “right” feelings in themselves and toward customers. As Hochschild’s investigation of airline stewardesses illustrates, the women she studied routinely had to “put on a smile” when dealing with passengers in order to manage surface displays of emotions. When emotion management becomes commodified, Hochschild (1979) says that it constitutes a form of emotional labor. Importantly, while everyone does some emotional management in their everyday lives, employers increasingly require this emotional control as a condition of “interactive serv­ice work” (Leidner  1993). Such an analysis reveals the inequalities inherent in this work, as some individuals may be unable to accomplish emotional labor due to race, gender, class, or other aspects of identity. For example, Harvey Wingfield (2009) finds that black male nurses report more difficulty accomplishing emotional labor compared to women and white men, largely due to stereotypes surrounding race and masculinity. More recently, scholars have paid attention to how workers are not only expected to perform emotional labor but also aesthetic labor. Building from Hochschild’s (1983) insights, Warhurst et al. (2000) coin the term “aesthetic labor” to capture the appearance,

The Aesthetic Labor of Ethnographers   329 bodily, and style requirements of employment in the service industry. Aesthetic labor includes all aspects of a worker’s embodiment, from their comportment and style to their vocal patterns and general attractiveness—what Williams and Connell (2010) call “looking good and sounding right.” Thus, accomplishing aesthetic labor requires employees to align both physical appearance and mannerisms with a company’s image of how their employees should look and act. In some cases, prospective employees are recruited because they already embody (or are close to embodying) the brand aesthetic. In other cases, new employees are instructed in grooming, attire, and affect to better fit the image, either through direct training or indirect rules governing one’s uniform. Employees who cannot successfully embody the brand image may be put to work in less visible positions, such as in the stockroom or after-hours roles (Gruys 2012), assuming they were hired at all. Conceptually, aesthetic labor is related to Bourdieu’s (1984) theory of capital, habitus, and inequality, which suggests that one’s habitus (the mannerisms and bodily styles developed in childhood) predisposes some individuals to fare better in the interactive service economy. Because a person’s habitus often relies on their social class of origin, individuals with, for example, a middle-class background may fit more seamlessly into service-oriented positions where brand and image are at the forefront of customer interactions (Witz, Warhurst, and Nickson 2003). These demands for aesthetic labor reinforce hierarchies already present in the labor market and exacerbate inequalities around gender, race, ethnicity, age, social class, ability, and body size. As Witz, Warhurst, and Nickson (2003) found in their study of hotel employees, managers hired individuals who had the potential to personify the brand, usually involving middle-class markers of education level, body size and fitness, smile and teeth, grooming and hair, and “correct” tone of voice (48). While prescreening employees in such a way amplifies class (and often racial) inequalities, it is unclear if these practices violate any laws. Indeed, scholars note that the courts generally side with employers in their right to regulate employees’ appearances (Rhode 2010), leaving individuals disadvantaged by the requirements of aesthetic labor few legal options.

Aesthetics and Ethnography Despite a growing body of research on aesthetic labor, gaps remain in the literature, including an examination of aesthetic labor among ethnographers themselves. Several ethnographers have analyzed (or at least noted) the role of their embodiment during fieldwork, but none have done so through the conceptual lens of aesthetic labor. In some cases, ethnographers have acknowledged ways in which their already-existing appearance and mannerisms facilitated access to certain field sites or research subjects. In other cases, ethnographers have noted how their aesthetics created challenges to access, often requiring appearance management (or aesthetic labor). Some researchers do not recount doing any additional “work” to manage their self-presentation, but they do consider how appearance and mannerisms may have

330   Kjerstin Gruys and David J. Hutson facilitated access to data. For example, Mears (2011) was recruited to her field site before even considering it as a potential site of study because she looked like a fashion model (see also Czerniawski’s 2015 research as a plus-size model). In another case, Rivera (2015) noted that, because she appears “ethnically ambiguous,” her research subjects could believe that she belonged to whatever racial/ethnic group they preferred. Thus, she reports: “Many of the ethnic minorities who I interviewed referenced my last name or heritage in emphasizing a sense of commonality between us,” while “many white evaluators pronounced my name ‘Riviera’ like the posh coastal areas of Europe” (25). In this way, Rivera had insider access with both ethnic minorities and among whites. To note, although the ethnographers described here seem to “naturally” fit into their field sites, we do not suggest that these scholars are not engaging in aesthetic labor. Rather, it is the everyday aesthetic management they are already doing that coincides with the norms at their chosen field site. In contrast to cases where ethnographers’ appearance facilitated access, several scholars experienced the opposite. Pascoe (2011), for example, introduced the concept of “least gendered identity” to describe the logic she employed while managing her appearance and mannerisms in a way that “muted [her] difference,” between herself and the young men she was researching. Pascoe strategically avoided wearing makeup or tight clothing, “walking with a swagger,” not giggling, and smiling less, among other things. In his study of a poor and predominantly black neighborhood, Stuart (2016) found that residents were wary of him because he looked “cop-like”: Given my own appearance—specifically my short, military-style haircut, muscular build, and phenotypical attributes—residents routinely assumed that I was a plainclothes officer. As a mixed-race man—my father is black and my mother Mexican—my skin tone is noticeably lighter than that of the majority of the ­population, more closely resembling that of the predominantly white and Latino police force.  (27)

Wacquant (2004), in his ethnography of a Chicago boxing gym, also notes how his presence as a white, French, academic required negotiation for access to the predominantly black, working-class space. Armstrong and Hamilton (2013) were similarly reflexive regarding their differing access to the undergraduate women they studied. After noting that Armstrong was presumed by their research subjects to be one of the “real adults” and therefore less trustworthy, they found that Hamilton’s “youthful appearance, style of dress, and status as a student” made her more relatable. Although, because Hamilton’s hair was “very short,” this caused some participants to be “suspicious of this departure from the femininity valued on the floor,” which motivated her to grow out her hair for a time (xiv). While it is clear from the examples here that researchers do engage in aesthetic labor, it remains an unacknowledged and understudied phenomenon. In this chapter we ask: what aesthetic labor is required of ethnographers, and what are the methodological and social implications of performing aesthetic labor in the field?

The Aesthetic Labor of Ethnographers   331

Methods We use a comparative case method (George and Bennett 2005) and autoethnography to analyze the bodily practices of ethnographers across two sites: a coed retail gym and a women’s plus-size clothing store. Broadly speaking, both of our projects involved ethnographic data collection at field sites characterized as (1) workplaces in which workers performed interactive service work, and (2) workplaces in which bodies and embodiment were highly salient. In both cases, our previous findings documented the extent to which workers’ embodiments—their appearance, style, and mannerisms— were central to doing their jobs successfully. In particular, David found that personal trainers’ fit physiques operated as “bodily capital,” granting them interactional authority over higher status clients (Hutson 2016), and allowing exercise to be seen as means of treating illness—even when trainers had no formal medical education (Hutson 2013). Similarly, Kjerstin found that, despite store branding that explicitly celebrated larger body size, store employees and customers used “fat talk” to interactively reinforce already-existing unequal power relations based on body size, workplace hierarchies, and race/ethnicity (Gruys 2012). While our prior research focused on the work experiences of other people in these field sites, the present analysis is more autoethnographic in that we analyze our own experiences as academic workers performing the labor of qualitative data collection.

Ethnography in the Gym The research site where David conducted participant observation was a coed, retail gym in the southeastern Michigan area. This gym, Fitness Central (a pseudonym), was selected because of its varied population in terms of age, gender, race, and social class, largely due to its lower prices that encouraged families, couples, and students to join. Although the pricing structure attracted a diverse clientele, individuals who received personal training spent significantly more money than their membership-only counterparts. Rates for 1 hour of personal training ranged from $45 to $75, depending on various specials that were ongoing at the time of sign-up. This encouraged clients—who were aware of this ebb and flow of package prices—to let their training lapse until a new deal was available. These situations put trainers in the position of being both fitness instructors and salespeople, as they worked to retain a regular roster of clients. Much of this effort results from how trainers are paid in gyms where they only receive $20–$25 of the session price. And, given that most trainers work part-time, seeing clients for 4–6 hours a few days per week, this suggests that personal training is likely to be one job among many that individuals hold, rather than a career. Such insight is important in understanding the interactions trainers have with clients, as it contextualizes their aesthetic and emotional labor, as well as their performance of professionalism (Maguire 2008).

332   Kjerstin Gruys and David J. Hutson Conducting participant observation as a client was necessary for integrating into the training culture at Fitness Central. Within the gym space, people were often self-divided into groups based on where they exercised (i.e., the weight machines vs. the free weight area). However, one additional subdivision was whether or not people could be identified as “clients” by personal trainers. Clients were allowed to interact with trainers and staff in ways that ordinary members were not—they could greet trainers (sometimes verbally or with a head nod), and they could speak with them at the front desk or in the offices near the entrance of the gym. Indeed, the casual, interactional opportunities increased dramatically when identified as a client, as this indicated an investment in fitness and the gym. David’s own personal training involved exercising with a trainer 1 hour per week for 14 months (except for 8 weeks when traveling or between packages). David chose his personal trainer, Mark, because he came recommended by mutual acquaintances, and because of positive interactions with him outside of the gym. Mark was a conventionally attractive man in his late 30s, white, tall, thin, and muscular. He had blonde hair that was styled, and he had been involved in the fitness industry for some time. Before becoming a trainer, he had done some modeling and acting, which he said had helped him in making connections with clients. Mark and David worked closely each session, usually in the free weights area of the gym. This allowed for interactions with other trainers and clients, and it was a primary way that people became aware of David’s study. To take notes, David would jot down words or snippets of conversations in a small notebook, allowing him to observe relatively uninterrupted, as he worked out with his trainer or on his own.

Ethnography in a Clothing Store Kjerstin conducted 10 months of participant observation as a paid sales associate at Real Style (a pseudonym), a women’s plus-size store in Los Angeles, California. Bordo (2004) has argued that plus-size clothing companies’ “flesh-normalizing” campaigns offer a “species of resistance” (xxxi) against oppressive mainstream body ideals. Saguy and Ward (2011) similarly describe the plus-size fashion industry as “the industry most invested in creating positive and glamorous images of larger female bodies.” Real Style was an ideal site for observing how brand ideology and body size combined to shape service interactions because it offered the distinctive vantage point of observing the experiences of (mostly) plus-sized women workers and customers interacting within the framework of corporate branding that celebrated larger body sizes. In Kjerstin’s first impressions of Real Style, it appeared to be an oasis of body ac­cept­ ance for plus-sized women. Mannequins in the storefront were larger and more curvaceous than typical mannequins, and the branded concept of “Real Women” appeared throughout the store and company literature. Real Style’s corporate website asserted that “Real Style customers shop for style, not just for size.” These branding and corporate materials suggested that women ought to be “confident” and “proud” of being “real” and

The Aesthetic Labor of Ethnographers   333 having “curves.” Terms like “sophisticated,” “chic,” “fashion forward,” and “feminine” further painted a picture in which the ideal Real Style “look” was presumably middleto-upper class and certainly gender conforming. The clothing offered by Real Style ranged in size from 14 to 28, with three additional sizes (12, 30, and 32) offered online for certain items. Most garments were designed to fit women of an approximate height of 5’6” with additional “petite” sizes for women 5’4” or shorter, and “tall” sizes for women 5’8” or taller. The Real Style corporate website identified its target customer as “plus-size women ages 35–55.” No corporate materials spoke to the race/ethnicity or class status of target customers, though in-store, print, and television advertisements typically featured both white women and women of color, often side by side. Customers—almost all plus-sized women—ranged in age from teenagers to seniors, and they were racially diverse. Twenty-three of Real Style’s employees were plus-sized women, along with seven standard-sized female employees (including Kjerstin) and four standard-sized male employees. Working as a paid sales associate at Real Style allowed Kjerstin to spend considerable time observing both the “front stage” of the shop floor, as well as the “back stage” break room and stockroom (Goffman 1959). She spent most of her time assisting customers, keeping the store tidy, setting up store displays, and passing the slower times by chatting with coworkers. When interacting with customers, Kjerstin’s tasks ranged from providing very basic help, such as retrieving an article of clothing from the stockroom, to more complex interactions, such as measuring women for bras or providing advice on clothing choices. Kjerstin also spent time with several coworkers outside of Real Style in a variety of contexts, including carpooling, sharing meals at the corner diner, and attending a movie, a baby shower, and a coworker’s funeral. She was open with coworkers about her status as a graduate student, and that she was conducting research on body image and the fashion industry. Kjerstin recorded field notes during her breaks at Real Style using a personal digital assistant and portable keyboard. When she could do so discretely, she scribbled a short “reminder” phrase or two on receipt paper while working. She dictated additional field notes into a digital recorder during her commute home, and then transcribed and elaborated upon these notes with remaining details in the evening or on the following day.

Data Analysis To structure our comparison, we first inductively analyzed our own data based on broad themes we discussed together, such as site selection, preparing to enter a site, clothing and appearance, and interactions while observing. Next, we shared verbatim field notes from both sites that pertained to our themes, which we combined using memos to or­gan­ize the analysis as it emerged. This process has been utilized successfully in similar studies where researchers combined data sets collected independently for a more focused comparison (i.e., Davis, Dewey, and Murphy  2016; Rupp, Taylor, and Shapiro 2010). This approach allows for novel analyses to develop from distinct, but

334   Kjerstin Gruys and David J. Hutson related, data sets. In writing our findings we lean heavily on descriptive language written in first-person narrative to faithfully center our observations within the autoethnographic nature of our data. Both studies received institutional review board (IRB) approval from their respective universities, and all names have been assigned pseudonyms to ensure confidentiality.

Findings One’s appearance, style, or body in a field site can act as a means of gaining entry, ­maintaining access, or building rapport. Accordingly, our bodies facilitated (to varying degrees) all of those things. In the sections that follow, we detail how our attempts to accomplish aesthetic labor as researchers were successful in some cases or more challenging in others. First, we describe our general appearance, as well as how we were read by others in the site. Next, we explore specific instances of performing aesthetic labor, and how this depended significantly on various social interactions. In effect, we suggest that the aesthetic labor of ethnographers is a reciprocal process of navigating site members’ expectations, structural limitations, and intersectional inequalities.

Aesthetic Labor in the Gym When meeting people for in-person interviews, David describes himself as a “stocky white guy in his thirties with a shaved head and a goatee.” This gives people enough information to pick him out of a crowded café and introduce themselves. But within that portrayal is the key descriptor of “stocky,” as David is indeed stocky. He is neither short nor tall, fat nor thin—just by appearances alone, most people describe David as “solid.” While the terms “stocky” and “solid” politely skirt the typical designations of body weight, David is officially categorized at the upper end of “overweight” based on the Body Mass Index (5'10," 200 pounds). Thus, in most clothing, he appears to be a medium-height, stocky, white man with a shaved head and a goatee in his mid-to-late thirties. His embodiment positioned him well for working out with a personal trainer, as he was clearly neither a novice nor an expert. Such considerations of how his appearance marked him as a nonexpert were quite different from the concerns of personal trainers he studied, as they often saw a direct connection between embodiment and authority. Indeed, as one trainer noted to David: “Your body is your business card” (Hutson 2013, 68). Yet for the purposes of blending in, David’s build allowed him to take on the role of a client and be trained by an expert with higher levels of bodily capital (Hutson 2016). Gaining access to the research site did not require significant changes to David’s appearance, although he did carefully consider his attire when observing. Because his goal was to blend in—or, at least, not stick out—he attempted to accomplish aesthetic labor by wearing neutral colors typically associated with men’s workout clothes: black,

The Aesthetic Labor of Ethnographers   335 blue, and gray. Not only were these the most represented colors in athletic sections of clothing stores, they were the ones worn most often by men in the gym. There were, of course, rare exceptions to this masculine clothing mandate. One younger white man always wore red sneakers and a red hat, and one muscular black man usually sported a pair of bright green headphones. But, for the most part, David adhered to the expected colors for men in the gym so as to fade into the background. He also decided to wear looser fitting black t-shirts when working out. This was a conscious decision because he did not have a muscular or defined torso and knew that black (as a color) was more slimming. This allowed him to appear as a relatively average-looking gym-goer who could be read as “not too fit”—someone who was both trying to gain muscle (in the free weights area) and lose weight (in the cardio area). Performing this aesthetic labor was intended to let him observe uninterrupted on most occasions by constructing a nondescript appearance. Yet he still learned from observations and interactions with his trainer what kinds of appearances blended into the gym, which ones stood out, and where he fell along that spectrum. Doing research as a client brought a different set of concerns regarding aesthetic labor. While ethnographers working as employees might have to follow a given uniform or dress code, the rules regulating David’s appearance were less clear. Because working out with a personal trainer involved more intimate contact than David had previously experienced at the gym, he attended to his appearance on two levels: (1) grooming and clothing (to be presentable) and (2) bodily performance (to be seen as “serious” about fitness). Primarily, this was because he knew that exercising with his trainer might lead to interactions with other trainers that could yield data. For example, he noticed that his preparation for the gym on days when he was being trained was much more extensive than usual: Since starting training, I always shower and shave because of working out with Mark. Mark often comments on this and notes that my goatee is meticulously trimmed. During today’s session, he said in a seemingly impressed tone, “How much time do you spend on your goatee!?” I told him that it only takes about a minute to trim it up using a razor in the mirror. I jokingly replied: “Well, I have to make sure it looks good from every angle because I have no idea what you’ll be making me do.” Later, Mark commented on my cologne and joked about how I’ll just sweat it off: “Wow, you smell . . . good? [laughs] You know you’ll just sweat off the cologne, right? At least you’ll smell nice for a while.” I laughed along with him, but will not be wearing cologne again.  (August 25)

These interactions alerted David to where he fell along a spectrum of acceptable and unacceptable styles. On the one hand, Mark marveled at the precision in David’s goatee, and he mused that it was for his benefit since he’d be seeing David at odd angles. But it also revealed that this level of detail was appreciated by trainers who come into close contact with clients. His comment about David’s cologne, however, suggested that some bodily efforts were less important and, in this case, ran the risk of ridicule. Because David’s purpose in the gym was data collection and making connections with trainers,

336   Kjerstin Gruys and David J. Hutson this insight into what might mark him as “not serious” was important for accomplishing aesthetic labor. Mark’s comment was reminiscent of trainers David interviewed when commenting on a woman’s make-up in the gym. As one trainer said, “Well, I can certainly tell if somebody’s putting on makeup before going into the gym. I think it’s pretty funny. I’m not a fan of it [laughs]” (as quoted in Hutson 2016, 61). These remarks revealed the gendered rules of the gym for women, and many noted how they had to negotiate expectations of “hegemonic femininity” (Schippers 2007). Often, this involved giving up some aspects of hegemonic femininity (i.e., hair, cosmetics) in order to embrace others (i.e., thinness, muscle tone). Male clients, by and large, did not need to navigate competing demands, as their expected presentations of masculinity aligned with a hegemonic masculinity that privileges a more rough, relaxed, no frills aesthetic (Hutson  2016). Personal trainers, on the other hand, saw their appearance as directly connected to their status and authority, and both men and women spent significant time performing aesthetic labor (Hutson 2013). As an ethnographer, aesthetic labor was paramount for maintaining access to the community of trainers that David had begun interacting with as a client. One conversation with Mark illustrated that David was successfully accomplishing aesthetic labor. A recurring joke while working out involved appropriate versus inappropriate attire, specifically spandex. Mark would repeat an often-heard phrase: “Spandex is a privilege, not a right.” This conveyed the idea that the skin-tight material should only be worn by some people—those men or women who were lean and well-muscled. A similar trend of wearing revealing clothing occurred among men who worked out in the free weights area. Notably, many muscular men would wear a t-shirt with cut-off sleeves and the sides removed to give more freedom of movement when exercising. While this did give them more range of motion, it also made their torsos, abs, and pectorals highly visible whenever they moved. In one interaction while working out, Mark jokingly noted this similarity while clearly indicating what was appropriate for David’s body: Mark and I are doing a combination standing shoulder press with dumbbells that continue into bicep curls. I’m performing the movements, but am hesitating midway through the exercise to wiggle my shoulders and adjust my shirt, since it requires a full range of arm movement. Mark notices this and says, “Why are you stopping in the middle?” I reply, “My shirt keeps bunching up at the shoulders. It’s annoying.” He says, “Well stop it [laughs], you’re aiming for a smoother movement from start to finish.” I exclaim, “It’s not me, it’s the shirt! That’s it, next time I’m just going to cut the sides out of my shirt like those muscle guys.” Laughing in shock, Mark says: “Oh god no! You don’t want to be like the ‘spandex guy!’ ” We both laugh. (November 19)

Although offered in a friendly and jovial manner, Mark’s comment clearly touched on the limits of David’s body for public display, setting the parameters for how much he could show off without opening himself up to embarrassment and possibly closing off future interactions with trainers. Mark’s response was not unlike clients’ reactions when

The Aesthetic Labor of Ethnographers   337 commenting on the bodily limits of personal trainers. For most clients, they believed that trainers should be in excellent physical shape. As Holly says: “I’m gonna be honest. No disrespect, but I just would not want a fat slob training me. It’s just you look at them and wonder ‘Is her diet good?’ ” (as quoted in Hutson 2013, 69). For trainers to accomplish aesthetic labor and gain a client’s trust, they needed to maintain high levels of bodily capital. Given the description of David’s body as stocky, he discovered that within the context of the gym he was considered to be both overweight and unfit. However, these two things did not necessarily always go hand in hand. While David’s weight may have stood in for a degree of unfitness, weight alone was not the sole determinant, as even thin people could be unfit if they were unable to do the exercises prescribed by the trainer. During one trainer–client interaction David observed, a trainer explains this to his client: A young, white, male trainer is working out with a middle-aged, white, male client and having him do step lunges with weights. The client says, “I don’t feel like I’m making progress—I can’t do any more than I did last week. Do you think it’s because of my weight?” I notice the client is not slim, but not overly large either. The trainer responds, “No—that’s not it. I have a client who’s thin, but he’s not strong at all. You’d look at him and think he was in shape, but he’s not. And, he doesn’t really try—he doesn’t push himself. It just takes time to develop muscles.” The client, seeming to accept the explanation, begins another set of lunges.  (February 18)

This interaction reinforces one of the unspoken rules of the gym and one of the most important currencies for gaining respect: effort. Beyond the appearance and display of David’s body, another important aspect of accomplishing aesthetic labor involved displaying effort when exercising—both with his trainer and when working out on his own. In this sense, David became a representative of his trainer’s ability. That is, David’s progress of gaining muscle or losing weight signified Mark’s skill and David’s effort, and he found himself exercising more vigorously when another trainer was nearby. For example, while he was working out on his own, a trainer who sometimes interacted with Mark during their sessions came over and (unrequested) spotted David for a few repetitions of a bench press. He encouraged David to push through the last two or three reps with a generic “Come on, you got it!” while hovering his hands just under the bar. After finishing the set, he told David: “Just making sure you got those last two in. You keep working out this hard with Mark and you’ll really start to see some results.” David thanked him and said he hoped so, and he returned to his work. About 2 weeks later that trainer approached David about being interviewed for the study after hearing about it from a colleague. While fleeting, even momentary interactions are examples of how accomplishing aesthetic labor through appearance and effort allowed for additional opportunities at data collection. Although much of David’s time was spent in the gym doing participant observation with his trainer, he also conducted observations when working out alone. While taking this position in the field required aesthetic labor in the more general sense of blending in

338   Kjerstin Gruys and David J. Hutson and not sticking out, it also involved a gendered component. To observe trainer–client interactions, David had to enter the free weights area of the gym where most training took place. “Free weights,” in contrast to weight machines, are often seen as superior for bodily conditioning because they do not isolate muscles like weight machines. The free weights area is also notoriously a “men’s space”—one of the highly gendered areas of the gym. To gain access to the free weights area, David started wearing a backwards baseball cap to appear more masculine. Although David does identify openly as a gay man, that identity is not always visible because he typically presents (and is read as) masculine, which allows him to “pass” given the stereotypical association of femininity with gay men. Additionally, he usually only entered the free weights space when training with Mark. Thus, to better blend into the free weights area by himself, David used the strategy of wearing a baseball cap to increase his masculine “gender capital” (Bridges 2009). Similar to other researchers who have noted gender dynamics in gyms (Crossley  2006; Paradis  2012; Spencer  2012), doing so allowed him to exercise in a hypermasculine space and to take field notes without notice, signaling that he was successfully accomplishing aesthetic labor.

Aesthetic Labor in the Clothing Store At the time that Kjerstin conducted her research at Real Style, she was of similar height to most Real Style customers and shoppers (5'5"), but she was noticeably smaller in girth to almost all, generally wearing a standard-sized “10” in pants, while Real Style sizing started at size 14. Although she would not typically describe her body using the term “skinny,” in the context of a women’s plus-size clothing store she clearly belonged to the class of people that Ellsworth (1989, 308) refers to as having “white-skin, middle-class, able-bodied, and thin privilege.” Much as David described in the section earlier, Kjerstin’s body is neither thin nor fat. However, unlike David’s embodiment at Fitness Central, which positioned him well to blend in with other clients being trained, Kjerstin’s thinner-than-plus-sized body frequently stood out. As she has written before, “I anticipated that my being a standard-sized employee might naturally disrupt some of the unspoken assumptions that women held about working or shopping at a ‘plus-size’ store” (2012). Because of this, and despite her efforts to “blend in” as much as possible, her embodiment had an impact on the site that somewhat resembled Garfinkel’s (1967) use of breaching experiments to tease out the unwritten rules of social interaction. However, as will be described later, having a body that was sometimes disruptive to the site was not her intention, but instead something she had to realize and then navigate. To this day, years after Kjerstin first set foot in Real Style, she vividly remembers her experience of attempting to blend in, in terms of her appearance when she applied in person to be a salesperson. Reflecting on this in her field notes, she wrote: For possibly the first time in my life, I was consciously trying to avoid looking “too thin.” Although I want my clothes to be flattering, fashionable, and interview/work

The Aesthetic Labor of Ethnographers   339 appropriate, I intentionally avoided articles of clothing that would have highlighted the “smaller” areas of my body, such as my torso (area above hips and below bust). I also wore flat shoes instead of heels. Heels would have lengthened my body. The outfit I chose was: dark blue jeans, kitten-heeled shoes (less than 1" high), boatneck white ¾ sleeve t-shirt, a leopard print cardigan. [. . .] I decided at the last minute to wear my glasses. I debated this for a while, because glasses could make me seem a bit elitist/brainy, which could be bad, but they also make me look a little nerdy or quirky, which could be good because I didn’t want to come off as being totally mainstream (i.e., so “normal middle-class thin blonde white woman” that I couldn’t relate to women who weren’t white or who were fatter).  (January 28)

Because body size was of such salience at Real Style, Kjerstin was most concerned with not seeming too slender, but these field notes also illustrate her intention to avoid styling that might have been read as upper class or elitist, as she correctly anticipated that she had a more privileged race, class, and educational status compared to the typical retail worker. Despite Kjerstin’s efforts to blend in—or at least not stand out—to the extent possible, her interactions with the hiring managers at Real Style indicated that her efforts did not actually accomplish this goal. Still, it appears that her aesthetic was at least adequate because her job application to be a salesperson was accepted. The first question she asked the manager, Joe, was whether or not there was a dress code. She learned that blue jeans and flip-flops were forbidden because they were too casual and employees “were taking it too far.” Kjerstin had plenty of shoes that weren’t flip-flops, but she had to buy a new pair of pants to follow the “no blue jeans” rule. Other than these two prohibited items, employees were expected to dress in the style of clothing sold in the store, but not necessarily in clothing from the store. Specifically, Joe told Kjerstin to “accessorize, layer, and try to look like the mannequins.” She must have looked concerned, because he then added “you shouldn’t have anything to worry about,” suggesting that her outfit had at least landed her near Real Style’s aesthetic. Although Kjerstin was not required to wear Real Style clothes to work, the fact that her body was too small to fit into the smallest sizes was problematic in other ways. For example, one night all of the sales staff were required to attend formal training on how to measure customers for bras. The training required employees to practice bra fits on each other. Kjerstin was paired with a woman named Krystol, another salesperson who was white and plus-sized. After Kjerstin measured Krystol, she turned around to measure her. Although the training suggested that employees should avoid touching clients’ bodies as much as possible, as Krystol wrapped the measuring tape around Kjerstin’s body, she cupped her hands around each side of her torso and loudly proclaimed, “God you’re bony!” Although being physically groped was unexpected and unpleasant, the experience of having her body assessed so publicly—and in a way that marked her as “different” compared to the group—was more upsetting to Kjerstin. She felt her face flush and didn’t know what to say. It wasn’t until later that evening that Kjerstin was able to view Krystol’s comment from her perspective, realizing that Kjerstin’s mere presence at Real Style was understandably upsetting to many of the women who worked

340   Kjerstin Gruys and David J. Hutson and shopped there, who viewed the space as “safe” compared to the fat phobia they ­frequently experienced in other contexts. Thus, Kjerstin’s thinner body “helped” her learn this unspoken rule, but it also caused some emotional harm to the women at the field site. Some Real Style clients had similarly negative reactions to encountering Kjerstin’s body while shopping. Because the job required her to engage in “fat talk” as an aspect of performing emotional labor, Kjerstin initially had some difficulty connecting with customers. As detailed previously (Gruys 2012), when describing a pair of pants to a customer, Kjerstin once jokingly said that the pants were “great for women like me who always get ‘muffin top’!” The customer then replied, “I don’t think you have any place to be complaining about muffin top.” Once again Kjerstin had broken the rules, not only through her body but also through her body-talk; as a thinner woman, joking about having “muffin top” to a plus-size customer was both inappropriate and insulting. This surprised Kjerstin because she’d assumed that only extremely thin women could be seen as obnoxious for making such a statement. Through these occasions of “talking out of size” (Gruys 2012), Kjerstin realized that the social terrain of gender and body size wasn’t as simple as “supermodels versus the rest of us”; rather, the boundary between women who could shop at “regular” stores and those who “had to” shop at plus-size stores was extremely meaningful. These occasions also allowed Kjerstin to see other forms of boundary work oriented around fat phobia. One of her coworkers tried to explain customers’ occasional “rude” behavior. After a customer had been impatient with Kjerstin, Laura, a middle-aged Latina coworker, tried to comfort her by explaining: “You can’t take it personally that she was rude. She’s fat. . . ” Laura paused, and I asked her to go on. “Well . . . not that I’m . . . (gesturing to herself, indicating that she isn’t skinny) . . . but these women are fat. They have low self-esteem, and they’re rude! But, you know, they bring it upon themselves! And they’re gonna be twice as rude to you . . . but don’t feel bad. They bring it on themselves. They’re fat and it’s their own fault.”  (February 14)

Later that afternoon, Laura continued the conversation as follows: l:  

“Yes, you are definitely the smallest person who works here . . . , ‘cept Joe, but he doesn’t count.” k:  “Why doesn’t Joe count?” l:    “Since he’s a guy, and so the women don’t care, but they care about you.” k:  “What do you mean?” l:    “Well, all the customers hate you, because you’re skinny.” k:  “Really? Oh, I don’t believe that. I get that some of them might prefer to be only around other plus-sized women when they’re here, but I don’t think they hate me. And I definitely don’t think that all of them hate me!” l:   “Oh, they do. I’ve worked here for 3 years, and it’s all of them. They all hate skinny women, and I know it’s messed up, but can you blame them? I mean, don’t feel bad, they’re . . . (spiraling her finger next to her head to indicate ‘crazy’) . . . and bitter.”

The Aesthetic Labor of Ethnographers   341 k:  “What do you mean?” (mimicking her hand motion) l:   “Well, you know, I mean, I know it’s hard to lose weight, gosh, I mean I’m fat, you know? But there’s something wrong with them, like, in their heads, that lets them get so big and not do anything about it . . . eating junk food all the time, and being lazy.”

Hearing Laura describe fat women using such derogatory terms and stereotypes while simultaneously acknowledging her own fat body (which she then distanced from such stereotypes) was a poignant illustration of the identity work that individuals do when they are members of a stigmatized group and also buy into the very logics that justify the stigma. Schwalbe et al. (2000) refer to this as “defensive othering”—a strategy allowing individuals to distance themselves from stigma without challenging the structural arrangements creating it. Here, Kjerstin’s body had been the first step in a chain reaction of multiple women doing boundary work around gender and body size. As shown earlier, and despite performing aesthetic labor, Kjerstin’s thinner body kept her from blending in at her site. Kjerstin could not be the “fly on the wall” she’d hoped to be, but she nevertheless had access to particular types of data. As she described in previous work (Gruys 2012), her body unintentionally became its own ethnomethodological breaching experiment, forcing some of the unspoken rules at her site to become more visible. Similar experiences have been noted by other ethnographers, including Hoang (2014), who was viewed as fatter, older, and less attractive compared to the sex workers she worked alongside. In Hoang’s case, she argued that her embodiment facilitated rapport. Despite these advantages of having a body that didn’t fit in, there are ethical considerations to keep in mind, particularly as they relate to how stigmatized research subjects might experience emotional or psychological harm by encountering an embodied “intrusion” into spaces previously viewed as “safe.”

Conclusion In this chapter, we have noted how aesthetic labor is not only studied by ethnographers, but a practice they engage in as well. By comparing two distinct sites and utilizing autoethnographic accounts, we illustrate that the aesthetic labor of ethnographers requires a negotiation of blending in and/or sticking out. In Hutson’s (2013, 2016) study of personal trainers, his ability to accomplish aesthetic labor relied on crafting a “not too fit” and masculine self-presentation to blend into the male-dominated free weights area. For Gruys (2012), her relative thinness as an employee in the women’s plus-size clothing store made her stick out in ways that—although useful for some aspects of data collection—required alterations to self-presentation. Thus, in both cases the intersections of gender and body size/shape were especially salient to the accomplishment of aesthetic labor. Although our analyses here have focused on gender and body size/shape, future work examining ethnographers’ aesthetic labor should expand the analytical lens to consider

342   Kjerstin Gruys and David J. Hutson the influence of other intersecting categories. Intersectional analyses of ethnographers’ aesthetic labor are especially important for understanding the power dynamics and ethical implications of “studying up” versus “studying down” (Wolf 1993). For example, how might Kjerstin have been treated by coworkers had she actually been another retail worker trying to scrape together a living through low-wage labor, rather than as an upper-middle-class PhD candidate? How did her relative thinness intersect with these privileges? Similarly, to what extent did David’s racial privilege impact the way his “stocky” body was perceived? Might a stocky black man have been viewed as threatening by virtue of his gender, race, and larger body? Also, how did David’s masculine appearance mark him as tacitly “straight,” and would more visibly effeminate or queer-appearing researchers have had the same access to such spaces? Clearly, as has been found in research on nonacademic workers, an ethnographer’s ability to accomplish aesthetic labor is not simply a question of effort or intention, but relies on structural positioning. However, unlike research subjects, whose aesthetic labor is primarily oriented around their individual success in a job, ethnographers must also consider the extent to which their ability to blend in or stick out reinforces alreadyexisting inequalities. Our findings also highlight the multiple forms of labor involved in research. Often, data collection, analysis, and writing are thought of as primarily intellectual endeavors. Yet ethnography requires the additional aspects of physical, emotional, and—as we have argued—aesthetic labor. While in the field, ethnographers must maintain relationships with participants through emotional labor, retain access to the site by blending in or sticking out through aesthetic labor, and manage hours of observation through physical labor. Further, ethnographic work involves bodily demands beyond the field site in the form of writing up field notes, which can take its own toll on the body or be hindered by an already-fatigued body. For example, in the course of Kjerstin’s (Gruys 2012) study, she developed cubital tunnel syndrome in both arms, while David (Hutson 2013, 2016) often could not immediately write field notes after personal training sessions due to bodily pain and, occasionally, nausea. These experiences suggest that researchers with physical limitations or (dis)abilities may be additionally restricted in what field sites they can enter, the extent to which they can participate, and how long they can sustain the physical labor of note taking. Thus, we call for future explorations of ethnographers’ labor that more explicitly problematize embodied dimensions of intersectional inequalities involving gender, body size/shape, race/ethnicity, class, sexualities, and (dis)abilities.

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chapter 20

Bodies Th at Don ’t M at ter, bu t L a bor Th at Doe s The Low-Wage Male Migrant in Singapore and Dubai Laavanya Kathiravelu

Introduction There are almost 1.4 million temporary migrant workers in Singapore today. This makes up a quarter of the total resident population of the city-state. Out of this group, the largest component is made up of low-wage migrants—the men and women who do what are perceived as the “dirty, dangerous, and demeaning” jobs that locals will not. The Gulf emirate of Dubai has an even more stark reliance on low-wage labor. Almost 90 percent of its population is composed of foreigners, the majority of whom are engaged as domestic workers in homes or as laborers in shipyards, in service industries, and in the booming construction sector. Both these postcolonial city-states are indicative of bifurcated migration regimes that are increasingly becoming the norm across the globe and that engender a mode of engagement with the host city that is often transient, partial, and contingent. In these cosmopolitan and superdiverse urban spaces, male low-wage workers’ bodies are particularly marked for exclusion, despite being the ­largest component of migrants in both cities. Seen as temporary and transient, needed but not wanted, these men are subject not just to the structural forms of discrimination that disallow family reunification or any type of permanent residency, but they also live within an everyday social and physical landscape that prevents them from being equal urban residents and having a real “right to the city” (Harvey 2003). This chapter demonstrates, through interrelated tropes, how South Asian male migrant bodies are discursively constructed by city planners, by urban residents, and by migrants themselves. In doing so, it demonstrates how their labor is integral to the everyday functioning and the

346   Laavanya Kathiravelu continued renewal of the city, but their bodies and material presence are regarded as completely peripheral. This chapter discusses the body as a relational subject and object. This perspective implies that embodiment is not just cognitively felt, but that cognition is secondary and relies on the ways in which the body and parts of the body are perceived and placed by others. In such conceptualizations, sex, race, class, and disability status must be central considerations, particularly in the ways in which they represent unequal and hierarchical power relations. The body is then not a neutral biological entity, but an immediately and inherently social one, that is always caught within multiple matrices of value and ­cultural meaning. Within this relational perspective, then, bodies within the city are significant and important actors—not just to be overlaid or constrained by material structures, laws, and policy, but who are active and dynamic co-creators of place. This reading of the urban as imbued with potential and constantly shifting draws heavily from Nigel Thrift’s conceptualizations of nonrepresentation theory (2007), which center on the creation of place through performative and affective actions, regardless of intentionality and working at more subconscious levels. The chapter also situates itself within the literature on global cities (Sassen 2001), spaces which are now widely acknowledged to have highly bifurcated populations, wherein an underclass of migrants is a significant component. Embodiment is not just a relational entity; it is simultaneously processual—one that changes according to lived embodied experiences over time. Bodies are not static: whether they change over the life course or more subtly with material enhancements and clothing, they are constantly being reified and renegotiated. This understanding informs our analysis of low-wage migrants in significant ways. Entering a new space where their bodies may be seen as markers of difference and “out of place,” they are often marked as Other and have to undertake affective and embodied labor in order to attempt to establish their positions and legitimacy within the new migrant context. For many, this desired legitimacy is never achieved. This chapter discusses some significant ways in which lowstatus migrant male bodies are interpellated within a diverse city that enables and entails segregation, stigmatization, and alienation of this “invisible” population. After an extended discussion of the methodologies utilized in this research, the rest of this chapter interrogates the migrant body through various discursive tropes. In doing so, it demonstrates how low-wage migrant lives are shaped and how they are also made sense of by migrants themselves, sometimes counter to the ways in which they are perceived by a socially distant public.

Methodology The discussions in this chapter draw primarily from extended periods of fieldwork in two city-states, namely, Singapore and Dubai. They present excellent case studies to understand the place and role of low-wage migrant bodies in the urban setting, as both

Bodies That Don’t Matter, but Labor That Does   347 city-states host large proportions of migrants and are highly urbanized and dense cityscapes. These sites are highly comparable, as both have strict labor regimes that restrict permanent settlement and other rights of low-wage labor migrants (Kathiravelu 2016; Yeoh  2006). The low-wage populations studied in both sites are also predominantly Asian migrants from parts of South and Southeast Asia, important players in the SouthSouth migration that now counts for the largest international flow of mobile people in the world. The interviews that this chapter draws from were conducted predominantly with Tamil-speaking migrants from the state of Tamil Nadu in South India and were recruited through snowball sampling. The duration these workers had been employed in either Singapore or Dubai ranged from a few months to more than a decade. The main criterion for selection was that they were employed in occupations that qualified them as low-wage migrants—earning below a certain wage category. In each of these cities, this means that they are not eligible to migrate with dependent family members, and that their eventual return to the home country is guaranteed, as they are on visas that need to be periodically renewed, rendering their immigration status permanently temporary and making them ineligible for any kind of permanent residence. The interviews  quoted here were undertaken in mid-2017; however, the chapter draws from the author’s engagement with low-wage migrants over the past ten years. This extended length of engagement with informants allows for the emergence of a more dynamic and processual understanding of their place in the city.

Embodied Methodologies In attempting to understand the place and quotidian lives of marginalized migrants in the city, the author utilized methods that involved accessing the more sensorial and mobile elements of everyday life. In addition to in-depth interviews and participant observation in work and leisure spaces that low-wage migrants occupied, more flexible methods such as spot interviews, transect walks, and photo and video elicitation were employed (Pink 2007). Transect walks involved “walking with” informants on their daily routines to and from work, as well as understanding how they accessed leisure spaces, utilized public transport networks, and navigated the spaces of mixed and diverse neighborhoods (see, e.g., Kathiravelu 2015). These walks were also instructive in drawing out reflections about particular spaces, incidents, and ways of inhabiting the body in specific spaces. Much of this type of embodied knowledge is often seen as unimportant by migrants and goes unarticulated in interviews or more formal conversations. Observing, stopping, and walking (Brown and Shortnell 2016; Pink 2007) through migrant neighborhoods in the city was also a technique that allowed for a less intrusive form of ethnography to be carried out. This enabled the observation of affective “atmospheres” of place (Swanton 2010) that were not just of histories and hierarchies that marked bodies but also left traces on physical spaces and objects. Photo and video elicitation enabled the author as researcher to access spaces and experiences that would not have otherwise been possible. These included the social gatherings between men over smuggled alcohol and spicy food within the rooms of a

348   Laavanya Kathiravelu worker dormitory, or the camaraderie between colleagues on the worksite of a high-rise tower block. These candidly shot photos and videos provided insight into the everyday ways in which migrant workers interacted with each other, but also how they inhabited particular spaces, especially those not under the gaze of supervisors or a middle-class Other. In using such multimedia technology, migrants were instructed to loosely film or photograph everyday life, enabling more informant-oriented data collection. While generating less “directed” data, this was an important means through which the author was made aware of activities and relationships that did not come up in interviews. In working with low-wage migrant populations, foregrounding the researcher’s own body and engaging face to face in affective ways emerged as imperative in building trusting relationships, as well as in accessing in-depth understandings of research participants. In the author’s attempts to build affinity with informants, she drew upon her South Asian heritage: dressing in kurtas and salwaar kameez when meeting with informants, eating and cooking South Asian meals together, and speaking in shared tongues. Sharing language and cultural affinity also made it easier for many of them to ask for help in translations or navigating bureaucracy related with their employment. Despite acknowledging that she had not been born in India, her shared heritage marked her as a partial insider. The author exchanged photographs of her children regularly on social media platforms like Whatsapp or Facebook with key informants, and they sent greetings to each other for religious or cultural festivals. For migrants who have limited contact with the middle class and citizen population of their adopted city, sustained and embodied contact signals respect for them as individuals in their own right, not just as productive bodies or workers. Engagement with researchers conveys also that their experiences are intellectually valuable, and not just their physical labor is important. The power inequalities engendered in this relationship are, however, still problematic and attempts to “give back” or remedy the imbalance are limited and partial.

Accessing Marginal Bodies Access to marginal spaces within cities and the marginalized people who live within them often requires the negotiation of gatekeepers and a longer breaking-in period. For researchers of the urban, spaces such as labor camps, worker dormitories, and the private spaces of people’s homes where domestic workers labor can be some of the most difficult spaces to conduct research in. Given some states have reservations about how the treatment of their low-wage migrant populations is portrayed, there is also a need to be cognizant about how researchers’ access of migrant dormitories is mediated. In Singapore, for example, the author had to seek permission from an official entity linked to the Ministry of Manpower in order to access a worker dormitory or negotiate access as part of a local non-governmental organization or welfare organization making routine visits. In these places, physical barriers such as retina scans and electronic turnstiles do not just prevent the public from getting in, but also monitor migrant bodies getting out.

Bodies That Don’t Matter, but Labor That Does   349 In Dubai, however, access to “labor camps” is less fraught. The security in spaces such as Sonapur—the site of the largest labor camp in Dubai—is not officially marked or protected. Due to its distance and separation from the rest of the city, it is unlikely that anyone without an intention to access the labor camps would end up there. Because of this, camps are less subject to surveillance and restrictions on entry. The author was able to enter some camps on Fridays—the day off for most migrants in Dubai—and interact with men living there with little impediment. She also accessed labor camps in Dubai through her work with a local voluntary association. While most men questioned her presence in such a highly gendered space, this novelty also made it easy to open up conversations and immediately explain her intentions as researcher. Notions of danger are often associated with spaces such as migrant labor camps that house only men—especially for female researchers entering such spaces. However, these were some of the most welcoming and hospitable spaces for a single, middle-class female. Due to the author’s class and gender, which marked her as an obvious and visible outsider, her presence was often treated with curiosity and welcomed, as she was seen as generally nonthreatening. In Singapore, however, her presence was occasionally questioned and she was sometimes assumed to be from “the government.” In a state with high levels of surveillance (especially of low-wage migrant men) and control of its transient population, this assumption is understandable. In such instances, she was quick to reassure participants of the neutrality of the research being undertaken and the protection of informants through techniques such as usage of pseudonyms. Her own body, then, became a visible tool through which she could mark out her difference within a workingclass migrant space, but that also allowed her to then ask questions and display curiosity that would have been inappropriate for a complete “insider.” Because of her position as a middle-class South Asian female, she was seen as “out of place,” yet needing more protection from the perceived dangers of the city. Despite her more privileged class status in the city, her migrant male interlocutors took it upon themselves to act as male guardians, at times escorting her to the bus stop or warning her about potential dangers in the city. This could also be seen as a means of displaying masculinity (see Kathiravelu 2016, chapter 4, for a larger discussion of this) and performing their knowledge of the city.

The Body as Technology This section interrogates the ways in which the rationalization of the male migrant body as a form of technology allows for neglect and paternalism by employers and state ­entities responsible for migrant welfare. Much of this begins with the routinization and disciplining of the migrant through managing his time and mobility. Most low-wage migrant men live in dormitories, which are often at the edges of the city, and experience a highly regimented life in Singapore and Dubai. They are typically bussed into and out of their worksites at the beginning and end of each day, with little opportunity to

350   Laavanya Kathiravelu enter or see other parts of the city. These enforced mobilities thus effectively disaffiliate them from the rest of the metropolis and urban population. Some do not even get a day off a week, but more typically, male low-wage migrants have a day off a week, when they cook, rest, socialize, and engage in maintaining transnational links like remitting money back to their home countries and calling family. Migrant workers describe the predictable and repetitive nature of work life in the adopted city. Here, it is striking that men working in two different cities both emphasize the rigid structuring of their workday and the norms imposed on their bodies for expectations of work or rest. “My work will end by 5.30 pm. So we have to load our equipment from our worksite into our lorry. After that we will get in the lorry and move on to our office. At our office, we will unload the equipment and wait for the lorry to send us back to our dormitory. Free time starts upon our arrival to the dormitory. . . . I will take a good bath and rest. Later on I will cook a meal for myself. If I have extra time, I will watch movies. I watch downloaded movies through my hand phone. After that I will fall asleep.” (Ramesh, air-con technician) “My work usually starts at 7 am and ends by 3 pm in Dubai. I worked in Shaik complex. Those are my fixed posting. After cleaning the complex I am done. At times I have to go to my general manager’s house. My general manager is from a very educated family. They do not know how to cook and make hot drinks. They have two maids, but they are from China and Sri Lanka. So my general manager usually tells me to come to their house to make Indian coffee. My general manager has a lot of Indian clients, so he will want me to make coffee for them. Working in my general manager’s house is considered as overtime. At times I will start making coffee at 4 pm and end at 11 pm. I will keep making coffee.” (Mohammed, general maintenance worker)

As with other jobs considered low skilled, there was little variation in the types of work and jobs that migrant men were paid to do. However, they were often expected to undertake additional ad hoc labor for their employers, sometimes unpaid or paid token sums. Part of this routinization of everyday life was the inability to dictate one’s own mobility and leisure time. Work was articulated as repetitive and uninteresting, prompting comparisons with their bodies as a type of technology—specifically a machine that is programmed for only a single repeated task (see Kathiravelu 2016, where this is further developed). These statements also express a sentiment where migrants see their work as devalued—not primarily in terms of the low wages that they are paid, but because of the lack of acknowledgment by supervisors, employers, and a larger public. In this trope, only certain parts or elements of the body are noticed, acknowledged, or seen as important. These are the parts of the body capable of physical and strenuous labor. The intellectual or skilled labor that is also necessary in carrying out many of these jobs is disregarded. Within this trope where the body is seen as a technology, on par with other machines used in construction or factories, it is not regarded as needing the types of care and maintenance that a fully human (and middle-class) body requires. One of the outcomes of this discursive construction is that migrant laborers do not enjoy the same standards

Bodies That Don’t Matter, but Labor That Does   351 of living that other urban residents in Singapore or Dubai are accustomed to. A construction worker living in a worker dormitory in Singapore describes the abject conditions under which men like him live. In addition to his descriptions, migrants like him also complain of frequent infestations of bed bugs and rats within their living spaces, which employers pay no heed to. “It is bad. There are no proper facilities for cooking, eating, and resting. The kitchen and canteen area are very dirty. No one will feel like eating at that place. We end up eating on the road as it is cleaner than the canteen area. So imagine how dirty it will be? We have to queue up for using the toilet as it is overpopulated with people. Even the toilets are very dirty. We have a single fan to support ten to fifteen of us. It is very stuffy and humid. Sometimes I regret coming over to Singapore. Facilities are better in India.” (Selvom, piping and electrical worker)

The low-wage migrant’s body is also a site of neglect. Workplace injuries and accidents impact the migrant worker’s body and often render bodies less productive or unproductive. This is especially the case when working on high-rise construction projects, which form the majority of new developments in both Dubai and Singapore. In cases of injury that results in migrants being unable to continue work, employers are often unsympathetic, and workers wait months or years for appropriate compensation, which often never materializes (Chok and Ng 2017; Human Rights Watch 2009). Once unproductive, migrant bodies are considered irrelevant and an externality to be quickly discarded. Through the rationalization of the low-wage migrant body as “machine,” employers and state agencies that deal with temporary migrants’ welfare reify a dehumanizing rhetoric that allows for overwork and neglect of migrants’ bodies.

The Unproductive Body A corollary of perceiving migrant men as machines is to view their need for leisure time as unnecessary. Consequently, low-wage migrant bodies at rest are conceived purely as unproductive. This section describes how the resting migrant male body is perceived and interpellated to a space that is at the margins and away from the majority and mainstream of urban life. For many low-wage migrant workers, their daily rhythms consist of periods of intense, difficult, and dangerous work, followed by periods of enforced rest and boredom. For these migrants the city is not a space of endless possibility (or at least possibilities that they can access), but instead is a place of potential liability. Within rapidly developing cities like Singapore and Dubai, public spaces with unrestricted access to all are quickly disappearing. Instead, they are being taken over by commercial zones such as malls, theme parks, and even private beaches. This neoliberalization of public space has been acknowledged as a widespread trend, and its consequences for poor and marginalized

352   Laavanya Kathiravelu peoples have been well documented (Low 2006; Peck and Ticknell 2002). Low-wage migrant workers are doubly discriminated in these configurations; while they cannot economically afford to participate in such leisure activities, they are also socially stigmatized and seen as inappropriate within such spaces. Their perceived undesirability is not just linked to perceptions of them as dirty, smelly, and sexual predators, but it is also situated in one-dimensional understandings of them as “workers,” with only the need to accumulate capital. Within this frame, the worker’s body is seen as out of place when passive or at play, and not at work. The migrant worker’s body, when not on the worksite or visibly engaged in productive labor whether inside or outside the domestic sphere, is seen as out of place. Most Singaporeans avoid migrant enclaves like Lucky Plaza (for Filipino domestic workers) and Little India (South Asian low-wage migrant men) not just because of the discomfort of their own bodies being minorities “out of place,” but also because of the visibility of low-wage migrant bodies engaged in leisure activities, that is, being unproductive. Similarly, most middle-class residents of Dubai never enter areas of the city where labor camps are housed, or in the older parts of “old Dubai” where many low-wage migrants find cheap accommodation and where there is an associated thriving economy. The shared use of public space would force the tacit acknowledgment that migrant workers too need time off and spaces of leisure and relaxation, and that the city must also cater to them. However, this does not fit easily within the larger state discourse of them as “needed but not wanted,” to be used and discarded, and here only to accumulate capital (Yeoh 2006). This singular view is morphing slowly, with much sympathy and interest in recent years particularly over the situation of female domestic workers. This has in large part been through the work of migrant advocacy groups as well as independent media producers. Despite public acknowledgment that low-wage migrant rights must be protected in terms of payment of wages and other such issues, however, there is little agreement over the need for equal access to city spaces for these migrants as well. Unproductive, low-wage male migrant bodies are also equated with being threatening when at leisure and unsupervised. This is especially apparent in (middle-class) Singaporeans’ avoidance of Little India on Sundays, when most low-wage migrant workers get the day off and congregate in the space to meet with friends, remit money back home, and access other aspects of the ethnic economy (Chang 2000). Little India on Sundays can be read as an example of a “nervous landscape,” where an identity-based politics of containment has failed and instead produces anxiety, especially when the separation of space between bodies is minimal, and they are actually forced to touch (Bryne  2003). In fact, many Singaporeans even of Indian descent avoid Little India altogether for fear of close and embodied encounters with a lower-classed, dark-skinned male migrant Other (Henderson 2008). Here, Mohammed, an Indian man, describes the heightened humiliation he experiences when ostracized by a coethnic, someone who may look and sound like him. “Local Singaporeans will come to Little India, but they rarely talk to us; they seem to have some kind of prestige issue talking to us. . . . Local Indians and we are the same.

Bodies That Don’t Matter, but Labor That Does   353 We share the same language, race, but there is a difference [in] the way they treat us. They will not respect us when speaking. The local feels as though they lost their status when we are there. When we stand beside them, they will move away.” (Mohammed, construction worker)

Often Singaporean Indians also regard low-wage South Asian migrants as “uncivilized” and as potential threats to their physical safety. One key example of how this anxiety manifests even at a collective level can be seen in the response to the Little India riots of 2013, where several public vehicles were destroyed and riot police injured in the culturally South Asian neighborhood in Singapore. This riot was triggered by the accidental death of a low-wage migrant worker from India who was run over by a private bus that provides transportation to and from workers’ dormitories. The Singaporean state’s reaction to the riots was not just to deport without trial a large number of Indian workers suspected to have been involved in the rioting, but also to introduce an alcohol ban in the area (Lim 2013). This ruling was made ostensibly because low-wage migrants in the area became intoxicated with alcohol, lost control, and initiated riots. This ruling, in doing so, makes a decidedly normative judgment about the propensity of unproductive migrants to use their leisure time in frivolous and harmful ways. The move to ban alcohol consumption in public zones in Little India, while being coherent with the Singaporean state’s paternalism, is also one that was, first and foremost, specifically targeted at a particular group to discipline the bodies of those within that group. For low-wage migrants who must engage in “timepass” (Jeffrey 2010) without incurring substantial economic cost, this closes off an already scarce avenue of sociality and pleasure. Low-wage migrants bodies are thus not just controlled at work but also outside of it. In addition to the disciplining of their bodies and time by employers and the state, these men are also subject to the public gaze, which paints them as dangerous and delinquent, having no place within the city, except as laboring bodies.

Bodies of Simultaneous Affinity and Difference The migrant body works in spaces such as Singapore and Dubai as both a marker of difference but also, simultaneously, as a basis of affinity. While the foreign, working-class body creates an immediate distancing effect for middle-class residents, the shared experience of the racialized body is one that has potential to bring these disparate populations together. In Dubai, for instance, intraethnic communities of aid and welfare (Kathiravelu 2012) loosely formed around a shared ethnicity and language, particularly between Malayalee working-class migrants and their middle-class counterparts. On the other hand, Tamil migrants seek out Singapore as a destination because of the perceived ethnic and linguistic affinities associated with this postcolonial city. As

354   Laavanya Kathiravelu Singapore’s minority Indian population is primarily composed of ethnic Tamils, for migrants from Tamil Nadu, there is a “special” connection to the place, as the following quote illustrates. This affinity is often linked to particular spaces, where seeing similar bodies, hearing a recognizable language, and tasting familiar foods brings comfort. It is a highly embodied and corporeal affinity. Many migrants like Ramesh describe how Singapore doesn’t always feel like a completely foreign space to them: “I have this special interest . . . mainly due to the number of Indians I see at Little India. It is very heart-warming to see so many Indians at one place. In Singapore wherever you go there is a mixture of cultures. I feel secured and happy when I see fellow Indians. It is based on my personal comfort. It reminds me of India, where most of them are your fellow people. I do gain more confident in such places.” (Ramesh, thirty-seven, air-con technician)

Within the context of an expected welcome, the denial of corporeal and cultural affinity by the coethnic Other causes much emotional dissonance and feelings of rejection and exclusion that are affectively experienced. This series of interview excerpts all speak powerfully to the exclusions and affronts Indian migrant men face, despite the embodied phenotypic, linguistic, and cultural similarities that they expect will act as a basis for more inclusive interactions. “Once, I saw a vacant seat in a bus. The person sitting next to the vacant seat was an Indian guy. I felt comfortable when I saw an Indian man. When I went to sit in the vacant seat, the Indian guy moved to other available seats. The local looked down on me just because I was a foreign Indian. If non-Indians do this, I won’t get so offended. It affects me because it is a fellow Indian who did it. That was very sad . . . Local Indians and we are the same. We share the same language, race, but there is a difference the way they treat us.” (Hussein, construction worker) “Sometimes when I walk alone at night, people tend to move away from me. I just leave it as they do not disturb me. Sometimes in the MRT, I will ask directions from fellow Indians. They will give me a reply in English. So this kind of thing does happen. Some of them will communicate in Tamil if they are with their own friends but communicate in English to us. It happens.” (Raju, crane operator) “They don’t have to talk for a long duration; just a greeting and a little bit of care will make a big difference. End of the day, our ancestors are all from the same country. I really feel sad thinking about it.” (Kumar, electrician)

The initial expectations that many migrants may have about the hospitality of their host country are usually revised after arrival and encounters with the city. This eventuates in migrant men’s conceptions about the place of their own bodies within the city changing with time. One of the ways this shift manifests is in learning how to negotiate interpersonal relations within the urban. This may take the form of internalizing their marginalized status and retreating to the peripheries. Or, as in the case of Saravanan quoted next, manipulating the body becomes a way to establish connections, albeit

Bodies That Don’t Matter, but Labor That Does   355 fleeting ones. Projecting a pleasant and nonthreatening demeanor in fleeting encounters with locals is highlighted as key by one migrant man: “During the starting stage of my career, I felt awkward. I was afraid that they might not accept me, looking at my appearance. I had an inferiority complex due to the work I  was doing. Now I feel different. I have experience talking to locals. They are very friendly. The key to this problem is a smile. If you smile at the locals, they will smile.” (Saravanan, construction worker)

Beyond biological phenotype, more subtle cues such as type of clothing, hairstyles, and, of course, smell become the ways in which difference is established and perceived. The olfactory, in particular, has come to become an important marker of difference within the public domain in Singapore, particularly in relation to migrants. The significance of the olfactory came into sharpest light in 2013 during a dispute between a Singaporean Indian family and their migrant Chinese neighbors. This quarrel was centered on the fact that the non-Singaporean family had complained to local council authorities about the smells of curry emanating from the house next door and into their home. This incident, which garnered significant national and international media coverage, brought the tenuous nature of dense urban living into sharp relief. While p ­ ublic outrage was reserved for the new immigrants who were seen not to be respectful of the city’s multicultural and diverse culture, there is largely silence about the everyday forms of embodied discrimination that low-wage migrants experience. These nonverbal signals given out by a distanced public are internalized by low-wage migrants themselves as we can see from the following quote. Here, an Indian migrant describes the embodied ways in which others on the public train network show their disgust and discomfort with the presence of men who obviously engage in low-wage, “dirty” work. “When we travel in the MRT, people tend to cover their noses. I really feel very sad when this happens; at that moment I cannot wait to leave the MRT. It hurts me badly. We are normally smelly because of the hard work we do. It is human nature to sweat. We try our best to keep ourselves clean but sometimes it happen[s] without our knowledge.” (Murali, safety officer)

In racist representations, Singaporean Indians are also often depicted as foul smelling, because of the coconut oil in their hair, or because of the smell of curry emanating from the pores of their skin. However, there is little sympathy, even from coethnics, for the low-wage Indian migrant who becomes an extension of that trope. In fact, in attempting to distance themselves from the stereotype of the smelly Indian, Singaporean Indians embody a less ethnicized affect—speaking in English and expressing distaste of strong odors. In Dubai, however, where Indians are the majority ethnic group, and where a shared precarity as temporary migrants shapes everyday existence for both the middle and working class, there appears to be more co-ethnic solidarity (Kathiravelu 2012).

356   Laavanya Kathiravelu

Embodying the Ideal Urban Resident Habitus can be understood as a set of behavioral attitudes and habits that make up a social identity (Bourdieu  1990). It draws attention to the symbolic meaning of our actions. Habitus is inescapable as a marker of identity because it is ingrained and resides in the body. Thus, the corporeality of the body is an important part of the habitus that needs to be managed. The earlier parts of this chapter have discussed more visible aspects of the male Indian low-wage migrant’s corporeality. Here, this chapter discusses how the marginalized male migrant body must actively negotiate the material spaces of the city and its diversity. For many low-wage migrants from small towns or villages in their home country, migration is often the first extended experience with big-city life, as internal migration to a metropolis in India is not often a route taken prior to international mobility. Singapore and Dubai are especially known to be hypermodern cityscapes with hightech solutions embedded within the built environment. For these migrants from India, the everyday forms of technology that middle-class urban residents take for granted in the urban environment must be negotiated and learned. The use of taken-for-granted devices like the ATM must be demonstrated, often with guidance from a friend or co­worker who has had more experience in the host city. Other forms of technology are not so easily taught or observed, and they involve for some migrants overcoming an embodied hesitation and fear. This type of trepidation for many migrant men stems from the fear that their bodies are out of place within the realm of the modern metropolis, as the following quote demonstrates. “I felt nervous to get on the escalator. It is something I have never seen before. I was afraid I will fall off the escalator. I am very used to taking the staircase in India; here it was very modern.” (Kanagaraj, electrical supervisor)

Fear can also result from confrontations with embodied difference in a racially and culturally foreign Other. For low-wage migrants coming from a highly homogeneous linguistic and ethnic environment, encountering and dealing with diversity within the city is one of the key challenges that they face—not just as urban residents but also as employees attempting to fulfill job roles effectively. For migrants from Tamil Nadu, having to work alongside and closely with Bangladeshi and Chinese migrants is commonplace in the city-state of Singapore. Their work often deals with technical issues, where they have to cooperate across a worksite. These considerations are rarely taken into account by employers, and individual men have to work out their own solutions in such situations. The following quotes describe how the lack of language skills can induce an embodied feeling of fear. “Yes it was very scary. Bangladeshi workers are the majority in my ex-company. I had faced several communication problems. It was very tough at first. Day by day I learned gestures to communicate with them. It worked out, and I had no problem after that.” (Rajendran)

Bodies That Don’t Matter, but Labor That Does   357 “I felt afraid when I see a multiracial community. There are Malays, Chinese, and other nationalities living here. I was afraid to approach and talk to them as I do not know how would they judge me? It took me some time to learn the language and communication in Singapore. It was really very bad at first but as days passed, I manage to catch hold of the language. English was the most difficult though. I learnt most of my communication skills from my colleagues. They guided me through my learning journey.” (Mariappan, wiring and piping worker) “There was a lot of misunderstanding between us. The main cause was language. I had two Chinese bosses and one Indian supervisor as my superiors. Both the Chinese bosses always scold me. I get scolded almost every day. They will use Chinese words to scold me. Most of the time I don’t understand why they were scolding me. I feel very depressed during these times. It also good not to know Chinese, as this will provoke the situation further. The Indian supervisors are very friendly. We do not face any language barrier as both of us are able to speak Tamil. He helps my friends and me. He is very understanding and kind as well.” (Selvom, piping and electrical worker)

The issues of language were also present for Tamil migrants in Dubai, where the working language on sites was usually Hindi or Urdu, and Arabic was spoken by employers. Within such a space, Hussein describes how even the sight of someone who spoke the same mother tongue was a source of comfort. “I felt upset when I left my house to work abroad. I had many thoughts on leaving my family and parents behind. I had no previous experience leaving my family and parents before, not even to neighboring states within India. So going to Dubai which was considered to be very far in my understanding was very difficult to digest and overcome. While working in Dubai, I faced challenges in understanding their language. As we know, there is a lot of difference between our language and their language. Language was a major communication barrier. At that moment seeing our fellow countryman gives us a special happiness. It is really comfortable to communicate with our own people without a communication barrier” (Hussein, construction worker)

In describing the barriers that language poses, Mahen compares the working and living environment in Dubai, where he had worked before, to Singapore, where he now works. “In Singapore it was much easier. I felt it was more difficult in Dubai. In Singapore there are Tamil-speaking people. In Dubai most of them speak in Hindi and Arabic. Therefore, it was really difficult for me. I am from Tamil Nadu; we only know how to speak in Tamil. It took me months to learn Hindi. I started learning Hindi while observing people’s gestures. I even use to write notes, when people speak Hindi and Arabic. It took me six months to get used to the language.”

The affinity of a shared language (and ethnicity) often makes a city more hospitable. However, like Mahen, many low-wage migrants learn skills or languages on the job, as a means of assimilating into the host city and so that they can communicate with fellow workers. This type of labor and self-taught entrepreneurial behavior is hardly ever rewarded or even recognized by fellow residents or employers as remarkable. Migrants

358   Laavanya Kathiravelu themselves, while expressing pride in being fluent in the lingua franca of the city, also see it as a part of becoming a full urban resident, wholly embedded in the structures and flows of the city. Embodying a good urban resident involves other aspects of encountering and living with diversity as well—not just in communicating across different linguistic registers. Much of this centers on the workspace or public spaces, as we have seen from the earlier examples. But the domestic or domesticated and shared spaces of the worker dormitory are also zones where embodied forms of diversity must be encountered and negotiated. Many migrants express discomfort and even disgust at the unsanitary practices of differently raced migrant Others. “It was terrible. The environment is very dirty and unhygienic; no one cares about cleanliness. There are people from different nationalities; they have their own way of living. Some are not acceptable. Some will spit betel leaf on the ground. It is very disgusting. The toilet stinks; sometimes I even regret going to the toilet. It was very bad last time; now it has improved a lot.” (Kanagaraj, electrical supervisor)

These practices of learning to use technology and strategies to live and work with diverse Others are constitutive of “learning” the city. They are part of the embodied knowledge that migrants take with them, but that, together with learning new languages, is also not given recognition as part of the difficult path to becoming well-integrated urban residents. Low-wage migrants do this kind of “diversity work” that necessarily involves sustained embodied interactions without any support from human resource departments or state agencies. This is yet another way in which the embodied but also intellectual labor the low-wage migrants undertake is marginalized.

Disembodied Practices of Friendship and Kinship With the rise of information communication technology (ICT) and social media, many migrants rely on social networks that are more “virtual” than “real” for emotional, as well as more tangible, support (Vertovec 2004). In fact, after the increased restrictions on movement and recreational activities in the Little India district of Singapore, many migrant men report shifting much of their contact with friends and relatives to mediums such as Facebook or Whatsapp. For men staying in outerlying labor camps in difficultto-access regions of the city, maintaining contact through social media is also a more inexpensive way to maintain social lives and connections in the host country (as well as, of course, to family back home). “It is totally different now. If I have any problem, I can use my hand phone immediately to contact my family. Previously, you need a lot of money to make calls to India.” (Hussein, construction worker)

Bodies That Don’t Matter, but Labor That Does   359 “Hand phone was important even in those days. Now it has become more important as it has more functions that support communication. WhatsApp and Facebook have really helped me to do video calls to my sister. She will then pass the phone to my parents. I feel very happy that such application can help me to see my family. It feels as though I am in India when I use such application to communicate with my family.” (Mariappan, wiring and piping worker)

These interactions on cheap Facetime and Whatsapp calls take on a different mode of embodiment, where voices and images of the self represent a larger totality in their absence. This mode of contact is, however, constant, and acts as a reminder of the more embodied and offline interactions to come. The constant rhythm of communication, however, is not wholly positive. Along with being intimately involved in the lives of their family abroad, many men also become subject to household disputes and frequent requests for remittances. Most men also did not report accessing the Internet to reach out to social services or embassies, or obtain information about their legal rights in the host country. These disembodied transnational practices can thus be seen as extending the social sphere of the marginalized migrant, rather than creating new ones—both augmenting their connections within the migrant city but also linking them to spaces back home. It allows them to live out social and emotional lives online, when offline spaces are hostile and unfriendly to their presence.

Concluding Thoughts The contradictions between the fully embodied labor that low-wage migrants undertake and the lack of the visible and tangible presence of their bodies within many spaces of the city makes these case studies of Singapore and Dubai particularly stark. Bodies here, as elsewhere, are discursively formed and also discursively make up the material and social landscape of the city, through their performative iterations and interpellations. In the case of highly authoritarian states with bifurcated migration regimes such as Dubai and Singapore, these tussles to define what bodies mean and their right to the city typically leave low-status migrants disenfranchised and disaffiliated from the larger urban commons. In addition to acknowledging the role of structural factors such as immigration policy and lack of legal protections for low-wage migrants, this chapter has sought to demonstrate that it is also everyday embodied interactions that constitute the exclusions, stigmatization, and discrimination that characterize much of low-wage migrant lives in the city.

References Bourdieu, P. 1990. “Structures, Habitus, Practices.” In The Logic of Practice, translated by Richard Nice, 52–65. Cambridge: Polity Press. Brown, E., and T.  Shortnell, (Eds.). 2016. Walking in Cities: Quotidian Mobility as Urban Theory, Method and Practice. Philadelphia: Temple University Press.

360   Laavanya Kathiravelu Bryne, D. 2003. “Nervous Landscapes: Race and Space in Australia.” Journal of Social Archaeology 3, no. 2: 169–193. Chang, T. C. 2000. “Singapore’s Little India: A Tourist Attraction as a Contested Landscape.” Urban Studies 37, no. 2: 343–366. Chok, S., and J.  Ng. 2017. Wage Theft and Exploitation among Singapore’s Migrant Workers. Retrieved from Singapore: in Fieldwork Singapore—Policies and Statistics. https:// static1.squarespace.com/static/5a12725612abd96b9c737354/t/5a1fce6f652dead776d3c970 /1512033911372/Position_Paper_Wage-Theft-Exploitation-among-Singapores-Migrant-Workers .pdf. Harvey, D. 2003. “The Right to the City.” International Journal of Urban and Regional Research 27, no. 4: 939–941. Henderson, J. 2008. “Managing Urban Ethnic Heritage: Little India in Singapore.” International Journal of Heritage Studies 14, no. 4: 332–346. Human Rights Watch. 2009. The Island of Happiness: Exploitation of Migrant Workers on Saadiyat Island, Abu Dhabi. New York: Human Rights Watch. Jeffrey, C. 2010. Timepass: Youth, Class, and the Politics of Waiting in India. Stanford, CA: Stanford University Press. Kathiravelu, L. 2012. “Social Networks in Dubai: Informal Solidarities in an Uncaring State.” Journal of Intercultural Studies 33, no. 1: 103–119. Kathiravelu, L. 2015. “Encounter, Transport and Transitory Spaces.” In Diversities Old and New: Migration and Socio-Spatial Patterns in New York, Singapore and Johannesburg, edited by S. Vertovec, 120–134. London: Palgrave. Kathiravelu, L. 2016. Migrant Dubai: Low Wage Workers and the Construction of a Global City. London: Palgrave. Lim, Y. L. 2013. “Little India Riot: Repatriation of 53 Workers Under Way.” The Straits Times. http://www.straitstimes.com/singapore/little-india-riot-repatriation-of-53-workers-under-way in Fieldwork singapore-media stuff. Low, S. 2006. “How Private Interests Take Over Public Space: Zoning, Taxes, and Incorporation of Gated Communities.” In The Politics of Public Space, edited by N.  Smith and S.  Low, 81–102. London: Routledge. Peck, J., and A.  Ticknell. 2002. “Neoliberalizing Space.” In Spaces of Neoliberalism: Urban Restructuring in North America and Western Europe, edited by N. Brenner and N. Theodore. Oxford: Blackwell. Pink, S. 2007. “Walking with Video.” Visual Studies 22, no. 3: 240–252. Sassen, S. 2001. The Global City: New York, London, Tokyo. Princeton, NJ: Princeton University Press. Swanton, D. 2010. “Sorting Bodies: Race, Affect, and Everyday Multiculture in a Mill Town in Northern England.” Environment and Planning A 42, no. 10: 2332–2350. Thrift, N. 2007. Non-Representational Theory. London: Routledge. Vertovec, S. 2004. “Cheap Calls: The Social Glue of Migrant Transnationalism.” Global Networks 4, no. 2: 219–224. Yeoh, B. 2006. “Bifurcated Labour: The Unequal Incorporation of Transmigrants in Singapore.” Tijdschrift voor economische en sociale geografie 97, no. 1: 26–37.

chapter 21

Em bodied Spati a l Pr actices a n d th e Pow er to Ca r e Elise Paradis, Warren Mark Liew, and Myles Leslie

Within the last two decades, the sociology of space has emerged as a fertile field of theoretical and empirical inquiry across the disciplines of geography, philosophy, cultural anthropology, architecture, environmental science, linguistics, cognitive science, and performance studies. From global networks (Castells 1996) and cities (Blum  2003) to cognitive processes (Levinson  2003) and sexual practices (Green et al. 2010), spatial sociologists have sought to demonstrate how individuals and groups transform physical space into social space, where human actions and symbolic interactions in turn transform physical realities (Gieryn 2000; Urry [2001] 2004; Werlen 1993). In these processes, the human body emerges as the primary locus of meaning making. At once occupying and experiencing space, bodies are both objects and subjects that constitute the core of all social practice. The body is at once what we have (i.e., flesh and blood occupying physical space), who we are (i.e., an identity or self-image imagined and ascribed), and what we do (i.e., the bodily practices that make us social beings) (Waskul and Vannini 2006). As commonplace as it now seems, the notion that bodies are creators and mediators of social space is one that has received comparatively little attention in the sociology of health care practices. With some exceptions (Angus et al.  2005; Dyck et al.  2005; Mesman 2009; Mol 2002; Mol and Law 2004), accounts of health care delivery have generally shied from considering the body in space. Instead, following modern medicine’s “clinical gaze” (Foucault 1963), bodies have been viewed through the scientific rationalism of health care systems aimed at providing biomedical “solutions” to bodily “problems” through the efficient deployment of human and technological resources. Viewed through this lens, health care spaces such as hospitals, clinics, and wards are physical settings in which patient bodies—conceived of as physical systems—are to be

362   Elise Paradis, Warren Mark Liew, and Myles Leslie sheltered, treated, and cared for. These spaces are designed accordingly to accommodate and facilitate the clinical practices of caregiving (McGann 2013). Our aim in this chapter is to interrogate the dominant discourses of the disembodied biomedical model, exploring how bodies at once shape, and are shaped by, the social spaces in which they move. To this end, we draw on the theoretical insights of French philosopher Henri Lefebvre, particularly in his wide-ranging seminal text The Production of Space (1974), to analyze a set of empirical data collected during a year-long comparative ethnographic study of team interactions and patient care in four critical care units (CCUs) in two American cities (Paradis et al. 2014). Lefebvre (1974) regards the facts of embodiment as fundamental to socio-spatial life: “Considered overall, social practice presupposes the use of the body: the use of the hands, members and sensory organs, and the gestures of work as of activity unrelated to work” (40). His theory attends to both the embodied and disembodied dimensions of social space: space perceived by living subjects and conceived as abstract objects. For Lefebvre, the dialectical links between the material and symbolic dimensions of space trace a conceptual triad of conceived space, lived space, and perceived space—concepts that transact with, even as they transcend, the categories of Cartesian dualism. Reserving a fuller definition of the spatial triad for the next section, it is worth noting for now that the intuitive usefulness of Lefebvre’s framework has led many scholars to adopt and adapt it for their analytic purposes (e.g., Buser 2012; Carp 2009; Fincher and Iveson 2008; McGann 2013; Watckins 2005). In this chapter, we explore the affordances of Lefebvre’s conceptual vocabulary for critiquing the dominant epistemological and ideological paradigms of health care delivery. Focusing on the embodied spatial practices of health care in the hospital CCU, we seek to address the following questions: How do the bodies of clinicians and patients interact within the abstract and material spaces of health care delivery? What relations of power are negotiated through the embodied spatial practices of clinicians and patients? Using Lefebvre to study health care delivery highlights the generativity of embodied spatial practices as they enact, and react to, the social orderings of bodies, thereby revealing the dialectical tensions between conceived and lived space. Our chapter aims to make visible what the body does in the clinical environment in three interpretive narratives that we call “The Fight,” “The Parade,” and “The Plan.”

Embodying Space through Lefebvre’s Theory Writing in the wake of the French student protests of the late 1960s, Lefebvre ([1974] 1991) saw space as a construct of power, embodying the social relations of production and consumption within the political economy of Western capitalism.1 Lefebvre argued that while capitalistic modes of production had subjected human bodies to a homogenizing,

Embodied Spatial Practices and the Power to Care   363 functionalist work order, human bodies nonetheless played a disruptive role in the constitutive relations between space and power (Stewart 1995). Echoing the insights of Nietzsche, Bakhtin, Foucault, and de Certeau, Lefebvre maintained that any resistance to the status quo must begin with the body. Lefebvre’s conceptualization hinges on three “moments” in the social production of space: conceived, lived, and perceived space (Lefebvre [1974] 1991).2 Conceived space is the physical space constructed by cartographers, urban planners, architects, and mathematicians. It functions as an abstract referential frame for anchoring, ordering, and controlling the messy complexities of social life. From geographic maps and architectural schemas to organizational plans and statistical operations, conceived space is the product of scientific rationality, conceived through the codifications of knowledge experts who wield epistemological authority over representations of reality. Lived space indexes a way of knowing that is more informal, personal, and embodied than the formal, detached, and abstracted languages of expertly conceived space. Lived space is created by humans through their everyday experiences, flowing from their feelings and perceptions of the multiple meanings that imbue a particular space or body. As much as it emerges from the individual’s felt and imagined experience, it is “directly lived through its associated images and symbols, and hence the space of ‘inhabitants’ and ‘users’ ” of a space (39, emphasis in original). This is not the mental space of formal abstractions and logical-mathematical concepts, but the lived space of passionate embodied experience—one that finds rich expression in symbolic representations, whether through literature, art, or other modes of creative expression. Finally, perceived space is the space of spatial practices. Spatial practices can range from interpersonal gestures at the micro level, to social practices of everyday life, to the political actions that create systems of spatial distribution such as zoning and international borders (Urry [2001] 2004) at the macro level. Lefebvre sees “gestures” as a specific social code shared by, and understood through, the body. “Gestural systems,” writes Lefebvre, “embody ideology and bind it to practice. Through gestures, ideology escapes from pure abstraction and performs action” (215). Gestural systems are socially produced, culturally situated, and individually embodied; they express the attitudes, beliefs, and values of individuals as well as those of dominant groups. The perceived space of social practices resides in the immanent tensions between conceived space and lived space, as individuals mediate between the objective frames conceived as official knowledge and the subjective realities of their own lived experiences. Implicit in these mediations are the ways in which power is both asserted and contested, reproduced and reconfigured. As Lefebvre asserts, perceived space “also serves as a tool of thought and of action; that in addition to being a means of production it is also a means of control, and hence of domination, of power” (26). Spatial practices enable both conformity and predictability on the one hand, and subversion and transformation on the other. To study embodied spatial practices is to pay attention to how bodies—whether docile or agentive—act within and against the spatial limits demarcated by those in power (Bhabha 2004; Soja 1996). In what follows, we show how Lefebvre’s spatial triad can help to elaborate the embodied relations between structure and agency, reproduction

364   Elise Paradis, Warren Mark Liew, and Myles Leslie and resistance. In particular, we seek to understand how the bodies of medical ­professionals—along with their embodied markers of race, gender, body size, and profession—interact with conceived space, create their own lived space, and enact perceived space.

Methodology Our methodological approach eschews any claim to “generalizable” findings, insofar as it draws on an interpretivist paradigm of scholarly inquiry and, more specifically, offers to flesh out the contours of Lefebvre’s theory. The first and last authors conducted all data collection and fieldwork presented in this study, which included ethnographic observations, interviews, and shadowing sessions with clinicians. They met regularly to discuss emerging concerns and understandings and to agree on further lines of inquiry. The role of bodies in structuring care processes was identified as a focal area early in the study by the first author, who had studied embodied and gendered interactions in a boxing gym (Paradis 2012). Early on, then, fieldwork attempted to document the bodily aspects of care activities. The second author was brought in for his expertise in social theory and to contribute a fresh perspective on our data. The analysis that follows draws primarily on ethnographic observations and semistructured interviews with CCU clinicians. Data analysis started with the extraction of all body-related ethnographic field notes from our dataset by the first author. After an initial selection of fifty particularly rich events (Emerson, Fretz, and Shaw 1995), we each parsed through the data excerpts and engaged in open, inductive coding independently. Convening to compare and contrast our interpretations, we then generated several working themes around the categories of “bodies” and “space,” and evaluated the potential of different social theories of space for enriching our analyses. This process of dialogic, exploratory analysis led us to consider the potential usefulness of Lefebvre’s spatial triad in making sense of the embodied, spatial dynamics of social interactions in the CCU. A second round of focused coding was then carried out on a subset of seven stories that we considered particularly evocative. The resultant write-ups, drawing on a Lefebvrean analysis of three chosen vignettes, constitute our shared interpretation of the ethnographic data. Our analysis argues for the utility of interpretive research, in critical response to the hegemony of positivist methodologies in biomedical and clinical research (Green and Thorogood 2009). Specifically, we look to a rich tradition of narrative research, which encompasses the genres of biographical writing, autoethnography, and case narratives (Clandinin and Connelly 2000; Polkinghorne 1988), for inspiration. While acknowledging long-standing debates over the “crisis of representation” in ethnographic writing and qualitative research (Geertz 1988), we invoke the postpositivist premise that all social phenomena exist as multiple, complex realities that precede and exceed the representational powers of language (Lincoln, Lynham, and Guba 2013). Notwithstanding,

Embodied Spatial Practices and the Power to Care   365 the language of written narratives construct versions of “truth” as subjective ­representations of lived experience. Under this principle, attempts at scientific objectivity through the act of interpretation are self-evidently futile, and we thus present our interpreted/interpretive data fully as our own. Featuring attempts at “thick description” (Geertz 1973), the narrative vignettes based on our ethnographic data can be read as literary exercises in fleshing out the living, lively complexity of social phenomena. Our aim is to penetrate the surface structures of plot, characters, and setting to explore the hidden narratives of human action and motivation. More trenchantly, our interpretive narratives aim to confront the twin enemies of interpretivism, which Lefebvre ([1974] 1991) refers to as the “illusion of transparency” and the “realistic illusion.” The first “illusion of transparency” purports to unveil all things hidden and symbolic through a totalizing comprehension: “[a]nything hidden or dissimulated—and hence dangerous—is antagonistic to transparency, under whose reign everything can be taken in by a single glance from that mental eye which illuminates whatever it contemplates” (28). The second, “realistic illusion” sees material surfaces as yielding more truth than their symbolic representations, a view predicated on “the mistaken belief that ‘things’ have more of an existence than the ‘subject,’ his thought and his desires” (29). Lefebvre’s critique of the illusions of empiricism—which see “truth” as an observable, unified reality—joins forces with the poststructuralist paradigms of narrative inquiry, placing the burden of proof on the creative reconstruction, rather than the mimetic representation, of reality. Implicit in our methodology for this chapter is the desire to penetrate the illusions of transparency and realism through the very act of subjective transcription, description, and interpretation. Ultimately, our intention is to move beyond questions of validity (e.g., Are our findings valid? Are our observations and observational instruments reliable?) toward questions of consequentiality (e.g., How do our interpretations resonate with the subjective experiences of our readers, rousing both judgment and sympathy? How might they move people to transform policies, programs, and practices around interprofessional collaboration and patient care?). The latter point on consequentiality (i.e., the question of “so what?”) will be taken up again in the chapter’s conclusion.

The Fight: A Nurse’s Lived Experience of Interprofessional Rounds In this first vignette, we show how a nurse, Zoe, experiences interprofessional rounds as an embodied space of contention, a fight between herself and physicians. We have described elsewhere the nature and purposes of rounds in the CCU (Paradis, Leslie, and Gropper 2016), but here it suffices to know that rounds are professionally and socially sanctioned spaces where clinicians in the CCU come together to discuss patients. Grounded in both physical and social space, rounds are the “clearing house” where senior and junior physicians meet with their colleagues in the other professions (mostly

366   Elise Paradis, Warren Mark Liew, and Myles Leslie nurses and pharmacists) to share, solicit, and analyze data about their patients. This supposedly collaborative arrangement is a ritualized effort to design more holistic care plans for patients from a multiplicity of physiological, psychological, and social perspectives. Zoe describes a common practice in the CCU: rounds, constituted by the bodies of participants and the props they carry, seem to fill most of the space available to them. These rounds counted between five and fifteen participants, each jockeying for position with one another within more or less circular huddles in the units’ hallways. Zoe is a white CCU nurse in her late 50s with decades of experience across a variety of clinical contexts. Tiny and wiry at about 80 pounds (36 kg), Zoe is always active and attentive to patients’ needs on the unit. She sees one of her key roles as advocating with physicians for her patients’ needs, and she speaks quickly, clearly, and with conviction. The assertive authority of her voice stands in seeming contrast to her physical stature. To discuss what she calls her “strong opinions” about the hospital and CCU administration, Zoe asked to meet away from the workplace. By asking to meet in a neutral space “outside”—a sunny patio near her home—she ascribes to the study hospital the idea of a limiting social space, one where her subversive views about collaboration in the CCU would not be welcome. The hospital where she works is a space where her own interests, and those of her patients, are sometimes orthogonal to other, more powerful imperatives. Elise met her over iced tea in the fall of 2013, and Zoe shared her lived experiences of rounds through expressive nonverbal gestures and language. Elise:  So one of the things that I have noticed is when they [the physicians] do their rounds, they make a circle. Zoe (RN):  Right [sharply], try and get around them, it’s close to impossible.

Zoe’s voice, clipped and animated, makes audible her frustration as she constructs her lived experience of rounds as an obstacle. For her, the physical act of navigating the space around physicians’ bodies and conversations is often “close to impossible.” The interview continues: Elise:  Anything else you notice about their circle formation? Zoe:  Well, you have to fight to get in it. As a nurse, as a person at the bedside, I will walk through the whole thing. I’ll say, “Excuse me,” and I’ll kind of go in there, and I want to hear.

Zoe sees the spatial practice of rounds as dominated by physicians’ interests and bounded by the close proximity of bodies. She must “get around” physicians to do her work, or “go in[to]” the circle to hear and be heard. Her lived space is experienced as an interprofessional “fight”—a physical battle for professional space. As part of her perceived space of embodied spatial practices, she mobilizes her body to “walk through the whole thing,” connecting her mission to “get in” with her professional identity as a nurse, someone “at the bedside” who has a real stake in the conversation about the patients she sees as hers. The tropes of “fighting” and “getting in” reflect bodily experiences of

Embodied Spatial Practices and the Power to Care   367 struggle and penetration, illustrating how metaphors play a constitutive role in our embodied perceptions of everyday experience (Lakoff and Johnson  1980; Varela, Thompson, and Rosch  1991). Here, martial metaphors underscore the lived space of conflict that Zoe inhabits as a recipient of symbolic violence within the professional hierarchy of medicine, an outsider in medicine’s conversations: Zoe:  I want to be kind of near to the attendings because they (junior physicians) are directing things toward the attending. I want to hear that information. I want to hear the attending. And sometimes it’s really hard to get in there. Sometimes they [the physicians] sit in front of you.

Since attending physicians (also known as staff or consultants outside the United States) are at the top of the medical hierarchy, junior physicians routinely direct their oral patient reports toward them. Physicians’ voices are material, and they participate in Zoe’s lived experience of rounds, shaping her embodied perception of the social spaces of interprofessional inclusion and exclusion. To be within hearing range of the conversation, Zoe must try to position herself near the attending physician in what is already a crowded space. Standing near the attending physician requires Zoe to navigate the bodies of the many clinicians who share her goal: to hear and be heard. When physicians “sit in front of [her]”, physically blocking her entry to the critical conversational zone, she is made to feel out of place, an “outsider” ­dispossessed of the care space. The spatial practices of physicians impede her work as an embodied collaborator: she cannot participate in a conversation that she ­cannot hear. Zoe further describes what she perceives to be a gendered component of this behavior, which she calls “male space”: Zoe:  And also I’m real sensitive to male space. Even though there’s a lot of women there that will do the same, but mainly I’m really sensitive to a lot of that male space because they’re like this. [Zoe stands up and uses her body to imitate the posture that she finds offensive.] And it’s like, “Are you kidding me?” You don’t really see a woman doing that. Elise [verbalizing zoe’s physical moves]:  Yeah, hands on their hips. Zoe:  Like this. Elise [still verbalizing]:  Shoulders wide. Zoe:  Yeah. The other day this guy hit me. He was twirling his stethoscope, and he hit me with it. I’m like . . .  Elise [laughing nervously]:  Wow. I’m sorry. Zoe [sitting down]:  I’m like, “For God’s sakes.” I’m like, “Hey.” And he goes, “Oh.” He didn’t say sorry or anything. And in my mind I was like, “The next time you hit me with that, you’re going to, you’re going to hear it, dude.” It’s a real thing about male space. Women don’t quite take up as much space. Elise:  Yeah. Zoe:  But if you say, “Excuse me,” and they don’t move out of the way a couple times, and I’m like, “Excuse me,” and then I’ll touch them. I generally don’t touch people, you know.

368   Elise Paradis, Warren Mark Liew, and Myles Leslie Zoe physicalizes her internalized image of “male space”: hands on hips, shoulders wide. Her experience is viscerally felt and received, and in turn vividly evoked through her bodily dramatizations. She makes visible the spatial practices of the “male” (physician) bodies that impinge on her own lived space. While Zoe realizes that some women physicians also behave in the way she describes, she nonetheless associates this enlarged posture with men’s larger physical statures—a view seemingly reinforced by the high ratio of men to women among CCU physicians. Zoe’s embodied experience of space as it intersects with gender, physical size, and professional status makes her see the spatial practices of physicians as attempts at claiming and defending a professional gendered authority. When men physicians sit in front of her, stake out space with their arms and shoulders, or hit her with their careless use of a prop, she reads these as spatial maneuvers that reinforce her sense of embodied vulnerability and marginality. Yet “as a nurse,” assigned to stand “at the bedside” of her patients within the conceived space of the hospital’s spatial division of labor, Zoe is determined to “get in” and “fight.”

The Parade: Mr. Grey Temporarily Disrupts Physicians’ Spatial Practices Mr. Grey is a white emaciated homeless man whom the CCU staff refer to as a “frequent flyer” because of his short but regular hospital admissions for a pulmonary condition. He is the kind of patient that few nurses like and many avoid (Leslie et al. 2017). Spirited and cantankerous, he refuses to play the docile sick role described by Parsons (1951), often calling for assistance and demanding high service standards in defiance of the unit’s middle-class standards of decorum. If the highly skilled Zoe was disadvantaged as a nurse during interprofessional rounds—fighting to gain space alongside her physician colleagues—the ill and socially outcast Mr. Grey could be seen as entirely powerless when it comes to influencing rounds. The conceived space of the CCU, designated by architects, infection control specialists, and information technologists, consists of a series of individual rooms that resemble “goldfish bowls” in which patients are subject to the near-perfect panoptic surveillance of nurses and physicians. Patients’ bodies are cared for in these spaces by being continuously monitored through a technological apparatus of eyes, probes, and instruments. Only hospital gowns, sheets, and a paper-thin curtain can shield patients from the gazes of CCU professionals, visitors, and ethnographers. Yet, beyond the protective veil of a gown, sheet, or curtain, probes and instruments constantly report out patients’ bodily functions to local and remote computer screens. The aggregate of these digital data, functioning as “objective” measures of a patient’s condition, become part of the conceived space of physician-initiated diagnostics, assessments, and prescriptions.

Embodied Spatial Practices and the Power to Care   369 Mr. Grey embodies a lived space of his own. Early on an October 2013 morning, a medical team of seven physicians begins rounding at Mr. Grey’s bedspace. As is typical practice on this CCU, they choose to stand outside, in the hallway. Their bodies and equipment—including a rolling chart desk and two mobile computing stations— jam the passage. This encourages all but the most determined nurses—nurses like Zoe in the previous vignette—to reroute themselves. Leaving the curtain at the doorway of Mr. Grey’s bedspace drawn, the physicians begin discussing his case, only to have him intrude upon their conversation as a disembodied voice from the other side of the yellow cloth. “Hey doc!” cries Mr. Grey, “the drugs aren’t working. I’m in a lot of pain here.” His off-stage attempt to garner more narcotics is followed up with a threat: he will discharge himself from the CCU against medical orders if his demands are not met. Eventually, a promise returns from the physicians’ side of the curtain: “Someone will stop by later, Mr. Grey.” Meanwhile, the rounding troupe moves off to an assembly point further along the hallway. While Mr. Grey’s lived space within the CCU is defined by the corporeal urgencies of a body in pain, the spatial practices of the rounding physicians reflect the professional exigencies of the clinical gaze. Mr. Grey and his fellow patients on the CCU are housed in rooms that feel like goldfish bowls—their bodies open to monitoring by eyes, probes, and instruments. Within the conceived space of official rounding schedules, doctors examine a series of disembodied data representations—vital signs, oxygen saturation levels, drug pump flow settings, radiographic images of organs and obstructions. As a troupe, they enact a professional calm that can stray into coldness as they duly, and dully, work through the data undistracted by patients, visitors, or other clinicians. Typically, interactions between physicians and patients happen either prior to rounds (when junior physicians collect data to present at rounds) and after rounds (when physicians follow up on the care plan by explaining it to the patient). In this way, rounds occupy a conceived space of official work schedules, insulated from patients’ lived spaces. Later, an unexpected parade begins. The rounding troupe has moved on to occupy the hallway outside a different goldfish bowl. The senior resident begins his presentation, reading from the screen of his mobile computing station. As he finishes outlining the admission history of the patient behind the curtain, and transitions into a head-totoe description of her condition, George (the unit’s occupational therapist) and Mr. Grey appear at the west end of the hallway. Encouraged by George, Mr. Grey is using a walker to round the corner, proceeding east along the hallway. With no apparent eye contact between George, Mr. Grey, and members of the rounding troupe, the physicians break their claim on the hallway space. They quietly roll their equipment out of the way, and what was previously a logjam thins out and spreads itself along the walls. Neither Myles nor Elise has ever seen rounds broken like this, as “crossing” rounds typically involves picking your way through the huddled crowd. In contrast, Mr. Grey proceeds like Moses through the Red Sea, walking at a stately pace and exclaiming to the rounding troupe: “Excuuuse me! Pardon Me!”

370   Elise Paradis, Warren Mark Liew, and Myles Leslie By suitably playing the sick role—that is, by agreeing to participate in treatment with George—and making a spectacle of it, Mr. Grey stages a performance of mock compliance that appears to usurp the rounding physicians’ usual claims to space, making them redistribute themselves and their furniture along the walls with reverential haste. The physicians, who have, up until this point, maintained the fiction that the senior resident’s discussion of the woman behind the curtain is continuing and at the center of their attention, are pressed against the walls with only their mobile computers separating them from Mr. Grey. As he gets to the end of the troupe with George in tow, he turns to the closest available white coat—a junior intern—and says, before moving on: “Hey doc, the drugs aren’t working! Just get me outta here.” The troupe then reassembles and continues as if nothing has happened. It is noteworthy that while Mr. Grey’s lived space is, like Zoe’s, very much dominated by the (in)attention of physicians, his brief assumption of the “good patient” mantle returns the conceived space of the CCU hallway to the intentions of its architects: a space designed for transit and movement. The interruption is clearly fleeting, and as much as Mr. Grey cares little about the architect’s conceptual vision, the infection preventionist’s vectors, or the technology provider’s schematics, he is more interested in reappropriating the physicians’ space and attention for his own means. His unimpeded passage shows how the conceived spaces of exclusion and inclusion in the CCU can be disrupted, albeit fleetingly, by the spatial practices of individual agency. While Mr. Grey succeeds momentarily in displacing the CCU’s spatial norms, his parade and his retinue—an apologetic occupational therapist—leave him with no more access to the drugs he wants than when his disembodied self was a mere voice behind the curtain. It is a victory for the Parsonian sick role—a role firmly entrenched in the conceived space of hospital medicine—rather than a triumph of the patient’s lived space of personal designs and desires. Once the parade is over, the sick patient’s usual status is reassumed, and the doctors’ monopoly over the hallway is reasserted.

The Plan: James’s Tactical Use of Bodies The contemporary rhetoric of interprofessional collaboration suggests a democratic ideal where someone’s rational arguments, supported with data, should hold power in collaborative decision making. Unfortunately, as we have seen in the case of Zoe, material and status barriers in the conceived space engendered by clinical hierarchies constrain the ability of nurses to “incorporate” themselves into the spatial practices of CCU rounds (see also Long et al. 2006). In this third vignette, we show how one male nurse, James, uses both his body and that of his patient to engage in interprofessional

Embodied Spatial Practices and the Power to Care   371 conversation and action. While we tell the story of an exceptional individual here, Myles and Elise saw similar tactics mobilized by other nurses to stage or display the complexity of their patients’ situation and thus force physicians to listen to them. James is a white CCU nurse in his late 40s, about six feet tall, broad shouldered, and quite muscular. He sports a short crew cut and wears his facial hair in a perpetual state of scruffiness. He speaks with few, carefully chosen words in a low but loud voice, and he is respected by both his nursing and physician colleagues as an experienced and knowledgeable nurse. One day in late fall 2012, Elise was observing him at work with Mr. Clark, an Asian homeless patient with a substance abuse problem. Mr. Clark was admitted because of a gastrointestinal bleed, and his alcohol withdrawal symptoms were making him belligerent and dangerous to himself and others. To manage Mr. Clark’s behavior and force him to stay on the unit, James called security twice and obtained orders from physicians to tie him to his bed using restraints. The hospital’s care and treatment policies—supported by state law—allow clinicians to confine individuals who are a danger to themselves, and thus Mr. Clark is forcibly strapped to his bed, his body held captive to the conceived space of hospital treatment regimes. Under the watchful scrutiny of the modern hospital’s clinical gaze, both his inputs (sedatives, fluids, dietician-approved foods, but no alcohol!) and his outputs (blood in the stool?) are closely monitored, first by his bedside nurse, and then by the medical team through his medical record. While restraints successfully confine the patient’s body and spatial practices, they fail to contain the corporeal and symbolic realities of the patient’s lived space. Held in place against his will, Mr. Clark continues to swear loudly, writhing and thrashing in painful protest against the hospital’s clinical protocols. Mr. Clark is still screaming as a group of four physicians in street clothes and white coats stop in front of his room for their morning rounds. He threatens to leave while tugging violently on his restraints. Meanwhile, James is sitting silently at his workstation in front of the computer, apparently unperturbed. The rounding physicians position themselves right by James, but they stand with their backs turned to him. Dr. Reddy (a second-year resident) is in charge of presenting Mr. Clark’s case to the group, and she does so while standing with one arm holding her notes and the other resting on the back of James’s chair. Her body erects a physical barrier between James and the physicians, while her nonchalant posture physically and symbolically excludes him from the circle. The attending physician and the other residents are listening intently as she presents her head-to-toe assessment, lab results, and trends. Realizing that she lacks an updated value for her presentation, she takes a step back to ask James, who is temporarily included in the circle. He answers and she steps back into the circle to repeat the value, jettisoning him from the circle again. Dr. Reddy’s bodily spatial practices assume a mediating role between the physician’s clinical expertise and the nurse’s professional understanding of the patient, acknowledging both sources of knowledge as crucial in examining the patient’s history and creating a care plan. Yet significantly, it is the physician’s voice that speaks on the nurse’s behalf, tacitly

372   Elise Paradis, Warren Mark Liew, and Myles Leslie acknowledging the latter’s authority—or at least, the authority of the data that he relays—while excluding his body from the circle. Up to this point, the power dynamic recalls what Elise and Myles have seen countless times: physicians dominating the conversation during purportedly interprofessional rounds, physically excluding other professionals and only temporarily including them to suit their own needs (Paradis et al. 2016). In this instance, a spatial interruption occurs when the physicians start discussing their care plan, which includes a gastrointestinal scope and the need to involve “psych” (i.e., psychiatry). At this point James stands up and leaves his chair, turning around to physically join the circle. He is taller than two of the physicians and certainly more physically imposing than all of them. His sudden, emphatic movement gets their attention and interrupts their planning. The materiality of his body and the contrast between his posture and his earlier passivity command a hearing. “This patient is really aggressive, very aware,” he announces, “and he knows tomorrow is Thanksgiving and he wants to go home to celebrate.” Mr. Clark is unlikely to consent to a GI scope for this reason, he continues, and since there are no surrogate decision makers on file, it is unlikely that they will be able to run the tests they need to ascertain whether his bleeding has resolved. As James speaks, Mr. Clark continues thrashing, swearing, and screaming loudly, as if to assert his spatial presence as the audible subject and object of the round’s investigations. With Mr. Clark’s palpable protestations acting the part of a chorus, James then reminds the physicians of key organizational details that they have missed in constructing their plan: “[The] GI [service physicians] will not be giving a verdict until 3 p.m., and psych will be gone then. Which means there won’t be a discharge.” He suggests that if they are to have any luck with discharging Mr. Clark for Thanksgiving, a psychiatric assessment would be necessary. In light of James’s contribution, the physicians begin to consider scheduling issues and come to agree that a rushed discharge would be counterproductive, despite encouraging signs of healing. They concur with the nurse’s prognosis that the patient, being violent and delusional through alcohol withdrawal, will likely go out to binge drink as soon as he gets out. Reflecting on Mr. Clark’s disruptive behavior after this episode, James shares with Elise how he has learned, where possible and when necessary, to delay sedating difficult patients before rounds so that the physicians can actually witness patients’ disruptive behavior. His tactic of “managing” his patient’s body by withholding medication results in a carefully timed display of resistant embodied spatial p ­ ractices, full of sound and fury, signifying the body in pain. Trapped in his bedspace, Mr. Clark’s spatial practices of agonized thrashings and anguished protests enact a drama of resistance scripted by the covert spatial practices of his wily nurse. Mr. Clark’s embodied spatial practices, mediated by James’s tactics, add weighty, ­carnal evidence to the case against an early discharge and transform the care plan. Significantly, it is through the patient’s ­resistant spatial practices, enacted within the lived space of his corporeal afflictions, that a space of authority is opened up for the nurse to influence the decisions of the rounding troupe.

Embodied Spatial Practices and the Power to Care   373

Conclusion In this chapter, we have sought to make theoretical sense of the ways in which embodied practices construct and contest the hierarchical spaces of health care delivery. Doctors, nurses, and patients do not merely occupy the spaces of health care units; they create differential spaces of power through their interactions as embodied spatial beings. Lefebvre’s framework on the social production of space allows us to conceptualize these interactions beyond the dualisms of mind and body, resistance and conformity, self and society, the better to elucidate the spatial dynamics of embodied power relations. While a Foucauldian notion of power as produced and productive underpins this interpretive framework, it is the attention to embodied and spatial dynamics that distinguishes Lefebvre’s empirically grounded theory. Accordingly, our three ethnographic vignettes illustrate the key elements of Lefebvre’s spatial triad: (1) the conceived space of biomedical health care, overseen by the clinical gaze of medical science, and organized by neoliberal capitalism’s rules of efficiency and productivity; (2) the lived space of personal bodily experience, articulated through the embodied agent’s verbal and nonverbal signs and behaviors; (3) the spatial practices of physicians, nurses, and patients as they maneuver their bodies in time and space to negotiate the power structures of the CCU. Having employed a Lefebvrean lens to interpret our narratives of care delivery, we hope to have shed theoretical light on how clinicians enact and experience health care spaces in and through their bodies. Our vignette on Zoe illustrates how her lived space as a nurse on the CCU is shaped by the spatial practices of gendered, physical, and professional power relations. While the collaborative ideal of interprofessionalism implies the equal participation of all voices in determining patient care plans, Zoe’s personal experiences suggest how spatial enactments of interprofessional collaborations work to undermine this ideal. Zoe’s sense of professional alienation is tied to her sense of spatial exclusion, and her fight to get in is, in an important way, a fight against this threat of deprofessionalization. Her fight is a set of embodied spatial practices that responds at once to the tensions between the conceived space of the CCU’s built environment, to the physicians’ exclusionary practices in perceived space, and to Zoe’s own lived space of corporeal and professional vulnerability. Fashioned by architects, infection control specialists, information technologists, and hospital administrators, the conceived space of the modern hospital constitutes a powerful apparatus for disciplining, organizing, and technologizing the work of health care providers. Within the panoptic design of the CCU’s institutionalized space, patients’ (assumed to be) docile bodies are continuously monitored through probes, wires, and machines that report out their vital signs to local and remote computer screens. Digital representations of patient bodies are thus codified in the conceived space of the hospital as part of a disembodied schema of physician-initiated diagnostics, prescriptions, and surveillance regulations (Armstrong 1995; Foucault [1963] 1973). In our second vignette,

374   Elise Paradis, Warren Mark Liew, and Myles Leslie Mr. Grey attempts to wriggle out of this institutional straightjacket and reclaim his body. However, his spatial practice of resistance—a mock-parade of the sick role and its at­tend­ant privileges—affords merely a temporary spectacle of inverted power relations within an entrenched conceived space. Indeed, Mr. Grey’s failure to participate in, let alone influence, his physicians’ monopoly over his care and treatment plan makes visible the intransigence of the CCU’s care architecture in the face of resistant spatial practices. Yet the transformative potential of resistance remains ever-present. In the setting of our final vignette, the institutional power of the hospital and its conceived space appears at first only to constrain and contain patients, treating their lived spaces of pain and sickness as mere corporeal objects, bereft of rational agency. Nonetheless, this apparently hegemonic conceived space of treatment protocols, and legal and professional strictures, can be tactically reappropriated through spatial practices that deploy the body and its lived space as rhetorical weapons. In the climax of the episode, James’s ­self-presentation as an empowered, knowledgeable, masculine agent conspires with Mr. Clark’s presentation as a disempowered, irrational, abject body, piecing together a “body” of evidence in support of an argument that persuasively informs and ultimately sways the care decisions of the physician-led rounding troupe. Echoing long-standing concerns over the tensions between physicians and nurses in interprofessional encounters, our vignettes suggest that physicians in the CCU characteristically dominate the orderings of space, dictating the terms of interaction between nurses, patients, and themselves according to the instrumentalist norms of the biomedical model of health care. While the nature of our data does not permit definitive claims about the racial and gendered dimensions of social hierarchies in the CCU, the fact that most CCU physicians in our study were white men, and a majority of the CCU nurses were women from a range of nonwhite racial backgrounds, suggests that interprofessional hierarchies favoring physicians are further bolstered by other social factors. In turn, numerous studies have shown the impact of interprofessional imbalances on mortality and morbidity rates, as well as on nurses’ morale and employment turnover (Estabrooks et al. 2005; Tourangeau et al. 2007). In a time where neoliberal ideologies in contemporary health care and social policy have eroded the significance of body work and the emotional labor of nurses and physicians (Bergum and Dossetor, 2005; Storch and Kenny  2007), scholarly attention to the ethical and practical implications of nurse–physician relations seems especially pertinent. We argue that this concern for relational ethics requires an attentiveness to the role of embodiment in situated enactments of hospital care delivery. The principle of embodiment recognizes the ecological contexts in which health care professionals live and work—namely, the spaces in which their bodies and those of others interact as they enact the ethical work of caring for the sick and dying. Melding literary descriptions with theoretical interpretations, our analysis has sought to dramatize the embodied dynamics of these ethical spaces, spaces in which bodies reflect, reproduce, and resist the prevailing structures of asymmetrical power relationships.

Embodied Spatial Practices and the Power to Care   375 Our aim in this chapter has been to show how a critical sociology of embodied spatial practices can offer health care practitioners a deeper, more humanistic account of health care delivery and the relational ethics that underlie it. Our intention is to provoke honest dialogue around how nurses and physicians can participate more effectively in the shared moral work of caring for their patients within the spatial constraints and affordances of their professional settings. To this end, we have deployed narrative inquiry as an affective tool for examining the politics and ethics of space, distancing our methods from the bloodless epistemologies of the dominant biomedical paradigm. That our ethnographic accounts might strike some readers as partial or even fictional is precisely the point: ethnography’s spatial practices themselves entail the act/art of inhabiting, through imaginative empathy, the lived and perceived spaces of others. Indeed, if art imitates life, it does so in ways that allow us to apprehend the lived realities of our embodied subjectivities.

Notes 1. Our intention in this chapter is not to impose a theory of “best fit” on our empirical data, but rather to experiment with theoretical instruments in an act of interpretive license. Theoretical framing is always an exercise in exclusion, and many social theorists have contributed to our understanding of spatial embodiment (e.g., Foucault, Bourdieu, MerleauPonty). They are theoretical alternatives to be set aside for the moment in favor of Lefebvre, whose writing appealed to us for its focus on the spatial embodiment of social practices. 2. In Donald-Nicholson’s (1991) translation of Lefebvre’s The Production of Space, this triadic schema is referred to as representational space, representations of space, and spatial practices. Throughout our analysis, we have chosen instead to use the terms lived space, conceived space, and spatial practices, respectively, for the sake of conciseness and clarity.

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376   Elise Paradis, Warren Mark Liew, and Myles Leslie Castells, Manuel. 1996. The Rise of the Network Society. Oxford: Wiley-Blackwell. Clandinin, D.  J., and F.  M.  Connelly. 2000. Narrative Inquiry: Experience and Story in Qualitative Research. San Francisco, CA: Jossey-Bass. Dyck, Isabel, Pia Kontos, Jan Angus, and Patricia McKeever. 2005. “The Home as a Site for Long-Term Care: Meanings and Management of Bodies and Spaces.” Health and Place 11, no. 2: 173–185. Emerson, Robert M., Rachel I. Fretz, and Linda L. Shaw. 1995. Writing Ethnographic Fieldnotes. Chicago: University of Chicago Press. Estabrooks, C. A., W. K Midodzi, G. Cummings, K. Ricker, and P. Giovannetti. 2005. “The Impact of Hospital Nursing Characteristics on 30-day Mortality. Nursing Research 54: 74–84. Fincher, R., and K. Iveson. 2008. Planning and Diversity in the City: Redistribution, Recognition and Encounter. Basingstoke, UK: Palgrave Macmillan. Foucault, Michel. (1963) 1973. The Birth of the Clinic: An Archaeology of Medical Perception. Translated by Alan Sheridan. New York: Pantheon. Geertz, Clifford. 1973. “Thick Description: Toward an Interpretive Theory of Culture.” Culture: Critical Concepts in Sociology 1: 173–196. Geertz, Clifford. 1988. Works and Lives: The Anthropologist as Author. Cambridge: Polity. Gieryn, Thomas  F. 2000. “A Space for Place in Sociology.” Annual Review of Sociology 26: 463–496. Green, Adam Isaiah, Mike Follert, Kathy Osterlund, and Jamie Paquin. 2010. “Space, Place and Sexual Sociality: Towards an ‘Atmospheric Analysis.’ ” Gender, Work and Organization 17, no. 1: 7–27. Green, Judith, and Nicki Thorogood. 2009. Qualitative Methods for Health Research. 2nd ed. Los Angeles: Sage. Lakoff, George, and Mark Johnson. 1980. Metaphors We Live By. Chicago: University of Chicago Press. Lefebvre, Henri. (1974) 1991. The Production of Space. Translated by Donald Nicholson-Smith. Oxford: Blackwell. Leslie, Myles, Elise Paradis, Michael A. Gropper, Michelle M. Milic, Simon Kitto, Scott Reeves, and Peter Pronovost. 2017. “A Typology of ICU Patients and Families from the Clinician Perspective: Toward Improving Communication.” Health Communication 32, no. 6: 777–783. Levinson, S. C. 2003. Space in Language and Cognition: Explorations in Cognitive Diversity. Cambridge, UK: Cambridge University Press. Lincoln, Y. S., S. Lynham, and E. Guba. 2013. “Paradigmatic Controversies, Contradictions, and Emerging Confluences.” In The Landscape of Qualitative Research, 4th ed., edited by N. K. Denzin and Y. S. Lincoln. Los Angeles, CA: Sage. Long, Debbie, Rowena Forsyth, Rick Iedema, and Katherine Carroll. 2006. “The (Im)possibilities of Clinical Democracy.” Health Sociology Review 15, no. 5: 506–519. McGann, Sarah. 2013. The Production of Hospice Space: Conceptualising the Space of Caring and Dying. Farnham, UK: Ashgate. Mesman, Jessica. 2009. “The Geography of Patient Safety: A Topical Analysis of Sterility.” Social Science and Medicine 69, no. 12: 1705–1712. Mol, Annemarie. 2002. The Body Multiple: Ontology in Medical Practice. Durham, NC: Duke University Press.

Embodied Spatial Practices and the Power to Care   377 Mol, Annemarie, and John Law. 2004. “Embodied Action, Enacted Bodies: The Example of Hypoglycaemia.” Body and Society 10, no. 2–3: 43–62. Paradis, Elise. 2012. “Boxers, Briefs or Bras? Bodies, Gender and Change in the Boxing Gym.” Body and Society 18, no. 2: 82–109. Paradis, Elise, Myles Leslie, and Michael A. Gropper. 2016. “Interprofessional Rhetoric and Operational Realities: An Ethnographic Study of Rounds in Four Intensive Care Units.” Advances in Health Sciences Education 21: 735–748. Paradis, Elise, Scott Reeves, Myles Leslie, Hanan Aboumatar, Ben Chesluk, Philip Clark, Molly Courtnay, Linda Franck, Gerri Lamb, Audrey Lyndon, Jessica Mesman, Kathleen Puntillo, Mattie Schmitt, Mary van Soeren, Bob Wachter, Merrick Zwarenstein, Michael  A.  Gropper, and Simon Kitto. 2014. “Exploring the Nature of Interprofessional Collaboration and Family Member Involvement in an Intensive Care Context.” Journal of Interprofessional Care 28, no. 1: 74–75. Parsons, Talcott. 1951. “Illness and the Role of the Physician: A Sociological Perspective.” American Journal of Orthopsychiatry 21, no. 3: 452–460. Polkinghorne, D. E. 1988. Narrative Knowing and the Human Sciences. Albany: State University of New York Press. Soja, Edward  W. 1996. Thirdspace: Journeys to Los Angeles and Other Real-and-Imagined Places. Oxford: Blackwell. Stewart, Lynn. 1995. “Bodies, Visions, and Spatial Politics: A Review Essay on Henri Lefebvre’s The Production of Space.” Environment and Planning D: Society and Space 13, no. 5: 609–618. Storch, J.  L., and N.  Kenny. 2007. “Shared Moral Work of Nurses and Physicians.” Nursing Ethics 14: 478–491. Tourangeau, A.  E., D.  M.  Doran, H.  L.  McGillis, P.  L.  O’Brien, D.  Pringle, J.  V.  Tu, and L.  A.  Cranley. 2007. “Impact of Hospital Nursing Care on 30-day Mortality for Acute Medical Patients.” Journal of Advanced Nursing 57, no. 1: 32–44. Urry, J. (2001) 2004. “The Sociology of Space and Place.” In The Blackwell Companion to Sociology, edited by Judith R Blau. Oxford: Blackwell. Varela, F.  J., E.  Thompson, and E.  Rosch. 1991. The Embodied Mind: Cognitive Science and Human Experience. Cambridge, MA: MIT Press. Waskul, Dennis  D., and Phillip Vannini. 2006. “Introduction: The Body in Symbolic Interaction.” In Body/Embodiment: Symbolic Interactionism and the Sociology of the Body, edited by Dennis D Waskul and Phillip Vannini. Aldershot, UK: Ashgate. Watckins, C. 2005. “Representations of Space, Spatial Practices and Spaces of Representation: An Application of Lefebvre’s Spatial Triad.” Culture and Organization 11, no. 3: 209–220. Werlen, B. 1993. Society, Action and Space: An Alternative Human Geography. London: Routledge.

chapter 22

Con testi ng N ew M a r k ets for Bodily K now l edge When and How Experts Draw the Line Rene Almeling

Prologue I launched this study of direct-to-consumer (DTC) genetic testing in 2009, just a few years after the first firms offering this service opened their doors. From the beginning, more so with this project than others, I have struggled with the classic sociological question: “What is this a case of?” As I attended genetics conferences and interviewed genetic counselors, all the while following breakneck changes in both the testing technology and the regulatory environment, I tried on different frames for my results: risk society, medical markets, professional jurisdiction, and now, finally, bodily knowledge. Hints of those previous approaches remain in what follows, but after receiving an invitation from the editors to contribute a chapter to this volume, I began thinking about how genetic risk might be usefully conceptualized as a form of bodily knowledge. By using that phrase—bodily knowledge—I seek to put this project into conversation with other research on bodies and embodiment. Loic Wacquant’s (2004) discussion of “bodily capital” to describe the experience of learning how to box comes to mind, as does Susan Bell’s (2009) analysis of how the health risks from diethylstilbestrol (DES), a synthetic estrogen that was widely prescribed during pregnancy in the mid-twentieth century, catalyzed an “embodied social movement” among women and their children. In this chapter, I am interested in two particular aspects of genetic risk as bodily knowledge. First, this is information about a particular individual’s body that they cannot learn on their own. It requires access to expensive technology, which historically had been available only through medical providers. With the advent of DTC testing

380   Rene Almeling firms, individuals were offered “direct” access to their own bodily information. Second, the development of a commercial market for this kind of bodily knowledge spurred controversy. As I trace the battle over who should be allowed to provide genetic risk information and under what conditions, framing this as a case of bodily knowledge allows for it to be situated in a longer history of medical control over bodily information, from mid-century physicians refusing to inform patients of cancer diagnoses (e.g., Bell 2009) to 1970s-era discussions about whether women could handle home pregnancy testing (Robinson 2016). It is within this broader historical context that the stakes of who has access to which forms of bodily knowledge become clear.

Introduction With the completion of the Human Genome Project in 2003, American scientists and clinicians heralded a new era, expressing great excitement about the promise of personalized medicine. Francis Collins, a physician-geneticist who directed the genome project and now heads the National Institutes of Health, narrated an “exciting vision” in which “personalized medicine” would usher in a “healthcare revolution.” Specifically, he referenced “the ability to use genetics . . . to do risk prediction [for illness]. . . . Increasingly, over time, this risk prediction will also allow people to choose things like appropriate diet and lifestyle practices, as well as medical surveillance and pharmacotherapy.”1 Yet, a few years later, when companies opened their doors to do just this—offer personalized genetic risk information directly to consumers (DTC)—there was an outcry from scientific and medical experts who expressed dismay about the commercialization of genetic testing. For their part, DTC genetic testing companies claimed to be fulfilling the longawaited promise of personalized medicine by “empowering” people with knowledge about their DNA.2 Funded by venture capitalists, startup firms like 23andMe and Navigenics, located in Silicon Valley, launched websites in the mid-2000s where customers could request a “spit kit” and provide credit card information. Using proprietary algorithms, the companies analyzed the saliva sample to produce a personalized report listing the customer’s genetic risks for numerous conditions, from Alzheimer’s disease to lung cancer and obesity. While the initial cost was several thousand dollars, it dropped dramatically in just a few years, to as little as $99.3 Before for-profit firms began selling genetic information directly to consumers, genetic testing was typically conducted in clinical settings by trained medical professionals. Of course, those medical professionals also earned remuneration for their services. To be able to compare and contrast what it means for genetic tests to be provided by a clinician or a company, I suggest that genetic risk information can be conceptualized as a market for bodily knowledge. In such a market, the purveyor could be a doctor or a firm, and the purchaser is an individual, who pays money in exchange for genetic risk information. I use this rendering of the transaction to make possible the questions:

Contesting New Markets for Bodily Knowledge   381 How did clinicians react to for-profit firms encroaching on their turf? What kinds of claims did they make to argue that the proper relationship for the provision of genetic information is a clinician and a patient, not a company and a customer? To answer these questions, I draw on the economic sociologist Viviana Zelizer’s theorization of relational work (2012) to analyze three kinds of data: editorials in scientific and medical journals, statements by medical professional organizations, and interviews with genetic counselors. I find that scientific and medical experts responded to the emergence of DTC genetic testing by differentiating medical genetic testing from commercial genetic testing. They did so by describing the complexity of the information, questioning the motives of for-profit firms, and underscoring their own commitment to protecting the public. In the conclusion, I offer suggestions for how to study markets for bodily knowledge, and I discuss the implications of experts’ relational work for individuals’ ability to access and control their own bodily information.

Medical Markets The relationship between medicine and commerce has been of interest to sociologists since Talcott Parsons’s The Social System (1951). Distinguishing the businessman and the physician by the institutional structures in which they operate, Parsons described business as oriented to self-interest and clinicians as oriented to the collectivity: “The ‘ideology’ of the [medical] profession lays great emphasis on the obligation of the physician to put the ‘welfare of the patient’ above his personal interests, and regards ‘commercialism’ as the most serious and insidious evil with which it has to contend” (435). Echoes of this rhetoric persist into the present. To give just one example, Arnold Relman, who famously sounded an alarm about the “medical-industrial complex” (1980), was profiled recently in The New York Times alongside Marcia Angell, another former editor of the New England Journal of Medicine, decrying the “commercial exploitation of medicine” (Zuger 2012). However, sociologists have converged on the opposite conclusion: that there is not (and has never been) a bright line separating medicine and commerce. Using different theoretical tools and analyzing a wide variety of social processes, sociologists writing in three distinct literatures have demonstrated the impossibility of separating medical practice from the marketplace, including medical sociologists writing about professionalization (e.g., Light 2010; Timmermans and Oh 2010), science and technology scholars analyzing biomedicalization (Clarke et al. 2010), and economic sociologists tracking markets for bodily goods (e.g., Almeling 2011; Healy 2006). In this chapter, I build on this research by asking a new question: how do medical professionals go about drawing the line between medicine and commerce? To zoom in on the rhetoric used by scientific and medical experts to distinguish medicine from the marketplace, I turn to Zelizer’s conceptualization of relational work in economic exchange. Zelizer has spent several decades arguing against the idea that economic processes and social processes are separable. With relational work, she offers

382   Rene Almeling a new conceptual tool for analyzing how people differentiate between social relationships and then mark those relationships with particular names and practices and forms of exchange. These are the four elements—social ties, economic transactions, media for those transactions, and meanings—that people constantly negotiate and attempt to “match” while engaging in economic action (2012, 151). While Zelizer’s original focus was on interpersonal exchange, she and others have suggested that relational work might extend to interactions between groups, such as industry and academia (Biscotti et al. 2012), or institutions, such as the state, capital, and labor (Bandelj 2012). In this chapter, I position scientific and medical experts as one such group to ask whether and how it is performing relational work in an effort to differentiate medical practice from commercial practice. Some sociological analyses of money and medicine have attended to the relational dynamics between clinicians and industry representatives, but most of these studies have  focused on the pharmaceutical industry (Doran et al.  2006; Fishman  2004; Sismondo 2009). In contrast to pharmaceutical companies, which generally seek to influence the process of medical research, medical diagnosis, and medical treatment within medical settings, DTC genetic testing companies exist outside the medical system. Although some DTC companies offer optional genetic counseling, many do not involve clinicians at all in the process of generating and reporting genetic information to clients. In this way, companies that provide personalized genetic reports directly to consumers are more akin to companies that sell home pregnancy tests or home HIV tests. Each of these tests provides bodily knowledge that is specific to a particular body, but it is not something that individuals can generate themselves. Moreover, tests for pregnancy, HIV, and genetic risk were once available only from medical professionals, and, in each case, the possibility that they would become publicly available generated controversy as clinicians debated whether people could handle this kind of information about their own bodies (see Leavitt  2006 and Robinson  2016 on home pregnancy tests; see McNeil  2012 on home HIV tests). Indeed, initial research on DTC genetic testing focused on how people reacted to learning about their own genetic risks (Almeling and Gadarian 2014; Bloss, Schork, and Topol 2011). In contrast, this analysis focuses on the response of scientific and medical experts to DTC genetic testing, revealing how this group engages in relational work (Zelizer  2012) in attempts to preserve jurisdiction (Abbott 1988) over a form of bodily knowledge.

Methods To analyze how scientific and medical experts draw the line between medicine and the market in response to DTC genetic testing, I gathered three kinds of data: editorials published in leading scientific and medical journals (n = 45), statements on DTC testing produced by major medical and genetics professional organizations (n = 8), and interviews with genetic counselors (n = 15). These different forms of data provide different

Contesting New Markets for Bodily Knowledge   383 vantage points on the broad category of “experts,” from scientists who generate genetic knowledge, clinicians who mobilize it in medical practice, and organizations that attempt to represent their interests. Statements from professional organizations are often drafted by committees and debated by members before being formally issued, so they offer an “official” view on DTC testing. In contrast, editorials are produced by individuals and thus may reveal more variation in viewpoints. And in contrast to these two published forms of data, one-on-one interviews with genetic counselors offer a more private forum for sharing opinions about DTC testing that may or may not conform to dominant views in the field. To identify editorials and organizational statements, I searched PubMed and Web of Science for several versions of the phrases “direct to consumer” and “genetic” in all fields. I restricted the search to items appearing between 2002 and 2012, the period extending 5 years before and 5 years after the first DTC genetic testing firm opened in 2007. I identified eight official statements from major medical and genetics professional organizations, including the American Medical Association (AMA) in 2004 and 2008, the American College of Medical Genetics (ACMG) in 2004 and 2008, the American Society of Human Genetics (ASHG) in 2007, the European Society of Human Genetics (ESHG) in 2010, and the National Society of Genetic Counselors (NSGC) in 2007 and 2011.4 Statements range in length from 41 words to 5,600 words (average: 1,600 words). I limited the sample of editorials to those published in top journals for science (Science, Nature), medicine (Journal of the American Medical Association [JAMA], New England Journal of Medicine [NEJM]), and genetics (Nature Genetics),5 as well as journals published by professional organizations that issued statements: ASHG’s American Journal of Human Genetics (AJHG), ACMG’s Genetics in Medicine (GiM), ESHG’s European Journal of Human Genetics (EJHG), and NSGC’s Journal of Genetic Counseling (JGC). Eight editorials appeared between 2002 and 2007, and thirteen were published in 2008, the year after two high-profile DTC companies (Navigenics and 23andMe) opened. Editorial material includes perspectives, commentaries, policy forums, and letters to the editor. Most are written by geneticists and clinicians, but a few are authored by ethicists and social scientists. Each item ranges from a few paragraphs to five pages; some focus solely on DTC testing, while others mention it briefly. In contrast to the public declarations of professional organizations and editorialists, interviews with genetic counselors offer a more informal look at the views of those who work daily with people deciding whether to take genetic tests and how to respond to the results. Genetic counselors are midlevel clinicians with a master’s degree that is equal parts molecular biology and psychosocial counseling. In 2009, I interviewed fifteen genetic counselors who worked in a variety of medical and commercial settings in the United States. Nine worked in traditional medical settings such as hospitals or clinics, three worked in medical settings that offered the personalized genetic reports produced by DTC companies (or reports that are similar), two worked for DTC companies, and one worked for a for-profit biotechnology company. Fourteen interviewees were women, which corresponds to the demographics of the profession; more than 90 percent of the approximately 3,000 genetic counselors in the United States identify as white

384   Rene Almeling women (NSGC Professional Status Survey 2009). Half of the interviewees were relatively young and new to the field, while half were more senior, including two past-presidents of NSGC. As a group, they had worked in more than thirty specialties, including prenatal screening, breast cancer genetics, and cardiovascular genetics. The hour-long interviews were designed to be pilot data for a larger project, so the open-ended questions ranged over many topics, but all interviewees were asked, “What are your thoughts about direct-toconsumer genetic testing companies?”6 The interviews were recorded, transcribed, and analyzed using Nvivo. All counselors are assigned pseudonyms.

Drawing the Line between Medicine and the Market In what follows, I examine how scientific and medical experts responded to the emergence of DTC genetic testing. I find that across a variety of domains—from editorials penned by leading scientists and clinicians to official statements issued by professional organizations and interviews with genetic counselors—experts were remarkably con­sist­ent in their opposition to the creation of a commercial market for genetic bodily knowledge. First, they emphasized the complexity of genetic information, raising concerns about whether people can understand what genetic tests do (and do not) tell them. Pointing to the myriad consequences that can stem from such misperceptions, clinicians argued that they alone are motivated by patient care and not by profit, drawing a distinct line between medicine and commerce. More than just rhetoric, though, medical professionals sought to protect the public by appealing to various regulatory agencies. In attempting to maintain their jurisdiction (Abbott 1988) over genetic testing, medical professionals engaged in relational work (Zelizer 2012) to define the appropriate social tie for the exchange of genetic information as between a clinician and a patient, not a company and a customer.

Complexity Genetic science has developed alongside an exponential increase in computing power, making it possible to generate a huge amount of data abouat DNA. Geneticists mine those data in attempts to discover associations between genetic variation and disease. While some of the most notorious genetic diseases can be traced to a single gene, such as Huntington’s disease or Tay-Sachs disease, most discoveries are now for genes that raise one’s risk of developing a particular disease, such as breast cancer or heart disease. Moreover, the amount of risk conferred by a particular gene can vary enormously, if it is known at all, especially given that such risks are often modified by environmental and lifestyle factors. These “complexities” are at the root of experts’ concerns about the uncertainty of genetic information and people’s ability to understand that information.

Contesting New Markets for Bodily Knowledge   385 In comparing genetic tests with other kinds of medical tests, medical professionals noted that genetic testing rarely provides a straightforward “yes or no” in response to whether one will become ill. The AMA made this point by referencing pregnancy tests and cholesterol tests: Genetic test results can be extremely difficult to interpret, especially without a basic background in genetics. Unlike a simple pregnancy test that yields a “positive” or “negative,” or even a more complicated cholesterol test that references a “normal range” but that is interpreted in the context of other factors, results of a genetic test can be much more challenging to interpret.  (2008)

The statement goes on to explain this is because a “positive result” does not necessarily mean the person will develop the disease, and a “negative result” does not necessarily mean the person will not. People who test “negative” for a particular genetic variant either face the same level of risk as the general population, or they might have an as-yet-undiscovered variant that does confer increased risk (AMA 2008). Medical professionals also mentioned uncertainty in contrasting contemporary genetic risk assessments with earlier forms of genetic testing. An editorial published in Science notes, “We currently face an inflection point in clinical medicine as we move from specific diagnostic tests for particular disorders to much broader assays for variants whose effects we do not yet fully understand” (McGuire et al. 2007, 1687). Stephanie Moore, a genetic counselor at a leading DTC firm, described that same “inflection point” in comparing her current job with previous jobs in traditional medical settings. [It is a] huge shift going from counseling about one disease and one gene to a preventative medicine panel, where we’re talking about probabilities. A lot of our time is spent helping people develop their action plans to mitigate risk, rather than talking about absolutes like “If you have this gene, we will want to do this surgery.” Those were the types of black and white cases that I would have counseled in clinic before, and now I counsel on a lot of gray areas.

As Moore points out, genetic testing in medical settings usually proceeds one test (or a few) at a time. In contrast, mid-2000s-era DTC genetic testing companies were running tests that attempted to predict risks for twenty or more conditions all at once. It is the uncertainty associated with those risk predictions that results in “gray areas,” which is why experts wondered whether genetic science had advanced to a point that it is ­possible to assign a particular risk number for a particular disease to a particular person. Indeed, professional organizations like the AMA expressed concerns about DTC reports both in terms of scientific validity and clinical utility. Some DTC genetic tests have no or very little scientific support, and therefore have the potential to mislead patients into thinking that test results actually mean something for their health. At best, the tests are a waste of consumers’ money, and at worst, could lead consumers to make health decisions without consulting a physician.  (2008)

386   Rene Almeling In one-on-one interviews, genetic counselors were even more blunt. Using the language of an earlier era, one senior counselor at an academic medical center likened personalized genetic reports to “snake oil,” describing them as “uninformative” and “basically commercial exploitation, you know, trying to make money.” Several other interviewees used the phrase “buyer beware,” including a past-president of NSGC. Colliding with concerns about the uncertainty of genetic information are public misperceptions about genetic determinism, that is, the belief that one’s genes foretell one’s future. Indeed, many editorials and statements referenced this cultural belief in asking whether people would be able to understand what genetic tests can (and cannot) tell them about health and disease. In particular, though, genetic counselors, whose job centers on talking with patients about genetic testing, could be quite specific about the significance of such misperceptions. Lisa Harris was the lead genetic counselor on a research project to study people’s responses to genetic reports like those offered by DTC companies. Here, she describes the source of genetic misperceptions. People often use the phrase “I have the gene for . . .” The perception is that genetics is deterministic, and it’s singular. And so those two points are really the crux of most misperceptions. People don’t realize that there are multiple genes that influence your risk, and that those don’t add up to a yes or no answer.

Even genetic counselors working at DTC companies noted how common it is for people to misunderstand genetic test results. Stephanie Moore, who had been at one of the leading firms since before its public launch, said: Every genetic counseling session, people get something out of it, something they didn’t know coming in, a question they thought they knew the answer to but they really had misunderstood. There are just so many different ways of looking at test results. Sometimes a genetic counseling session really just introduces the patient to a different way of thinking about their test results. So I do think people don’t know what they don’t know.

Yet, outside of the medical system, such counseling is optional, so even when it is offered for free, as in Lisa Harris’s nonprofit research organization or Stephanie Moore’s company, they report that only a tiny fraction of clients take advantage of it. More than just being concerned with people’s ability to grasp the complexities of genetic testing, clinicians worry about the serious consequences that could result from such misperceptions. Like the genetic counselors, the editor of Genetics in Medicine and a colleague referenced their own clinical experiences in discussing potential harms. In medical genetics, we have seen first hand in the faces of expectant mothers undergoing prenatal testing or in the families of patients with rare disorders, the power of information to disrupt emotions and lives. We both formally and viscerally understand how poorly equipped the world is to understand probabilities; we have

Contesting New Markets for Bodily Knowledge   387 directly experienced the myriad opportunities for misunderstanding that exist and the iatrogenic cost of unnecessary tests and procedures. (Evans and Green 2009, 568)

Indeed, many professional organizational statements included laundry lists of potential problems from DTC testing. NSGC warned that “individuals seeking genetic information directly from a manufacturer or supplier and without input from a healthcare provider may lack basic and essential knowledge of the purpose and appropriateness of testing, the accuracy and clinical significance of results for themselves and other family members, or the reliability of the laboratory” (2007). That same year, ASHG argued, “Exaggerated or unsupported claims may lead consumers to get tested inappropriately or to have false expectations regarding the benefits of testing. Further, consumers may make unwarranted, and even irrevocable, decisions on the basis of test results and associated information, such as the decision to terminate a pregnancy, to forgo needed treatment, or to pursue unproven therapies.” In addition to individual-level harms, some editorials posited systemic harms. Perhaps the public would lose faith in genetics because of the “premature” introduction of personalized genetic information by companies (e.g., Offit 2008, 1353). Ethicists suggested that patients wielding commercial genetic reports would place additional time pressure on already-burdened primary care physicians, one example of what they call “raiding the medical commons” (McGuire and Burke 2008, 2669). As detailed in the next section, this is the kind of line drawing between the realm of medicine (seen as a commonly held good that can be raided) and commerce (which precipitates the raiding) that appears throughout the editorials, statements, and interviews. Most of the published items, as well as many genetic counselors, mentioned at least a few potential positives from DTC testing, such as “increas[ing] access to medical testing services for some individuals” (NSGC 2007), “greater consumer autonomy and empowerment” (ASHG 2007), encouraging people to undertake preventive health behaviors (Audeh  2008, 2184), providing some medical information to adoptees (genetic counselor Anna Thomas, past-president of NSGC and director of a genetic counseling training program), “publicity” for clinical genetics and genetic counseling (genetic counselor Beth Ellis, academic medical center), and more “policy conversations” (genetic counselor Meg Johnson, academic medical center). However, in organizational statements, editorials, and interviews alike, far more attention was paid to “cons” than “pros.”

Motivation As a result of concerns about uncertainty, misperceptions, and potential consequences, scientific and medical experts argued that the proper context for the exchange of genetic information is a clinical relationship and not a commercial relationship. With just one exception, all of the professional organization statements included an explicit declaration that the provision of this kind of bodily knowledge should involve a medical professional.

388   Rene Almeling The potential for patients to be harmed by DTC genetic tests is magnified without a physician acting as a learned intermediary. Without the guidance of a physician, genetic counselor, or other genetics specialist, results could be misinterpreted, risks miscalculated, and incorrect health and lifestyle changes pursued.  (AMA 2008)

Similar sentiments pervaded the editorials and interviews. For example, Meg Johnson, a cardiovascular genetic counselor at an academic medical center, said, “I personally feel there are certain things that shouldn’t be tested for outside the setting of a clinical relationship, because of the issues around family history and interpretation and what else goes into the risk assessment.” A central component of the argument that genetic testing should occur within a “clinical relationship” involved positioning medicine and commerce as “fundamentally” opposed, particularly when it comes to the motivations of those involved in each realm. Echoing Parsons’s (1951) distinction, clinicians drew on a long-cultivated reputation as beneficent providers of health care in demarcating the practice of medicine from the pursuit of profit. As one geneticist wrote in JAMA, the implicit marketing strategy of these companies is to involve the consumer in a “voyage of genetic self-discovery,” even if some of the initial paths charted lead nowhere. . . . The incentive for financial profit in such a journey is at fundamental odds with the skeptical nature of scientific inquiry and the conservative nature of clinical translation of new biomedical technologies.  (Offit 2008, 1354)

In this rendering, scientists and clinicians are skeptical, conservative, and devoted to the careful deployment of new technology, while companies simply want to make money. Many editorials and statements focused on the advertisement of genetic tests in differentiating medicine from commerce, pointing to “market forces” and “greed” as reasons why advertisements may include misleading claims. In an early editorial that briefly mentions DTC testing, Guttmacher and Collins wrote, “The Internet has recently had a proliferation of genetic-testing sites that feature claims grounded in greed and pseudoscience, rather than in data or reality” (2003, 998). A few months later, the commentary accompanying ACMG’s 2004 statement noted, “When advertisements for genetic tests are presented on the Internet or in the media by a commercial entity . . . significant clinical information may be missing” (McCabe and McCabe  2004, 58). The implication is that medical professionals would not permit such oversights in explaining genetic testing to their patients. On several occasions, though, editorials and statements went further, suggesting that for-profit companies actively “capitalize” on genetic misperceptions to generate income. ESHG, reflecting a more collective approach to health care in much of Europe, posited, “Aggressive marketing strategies and slogans for DTC genetic testing might overstate the potential for predictive information of such tests and overrate its future health implications. All this is likely done to increase test uptake and artificially create new demands, that is, to earn money” (2010). Similarly, one of the first commentaries on DTC testing argued,

Contesting New Markets for Bodily Knowledge   389 Public understanding of genetics is characterized by misconception and exaggerated expectation, a context advertisers can use to their advantage. They capitalize on the hope and fear that genetics evokes to sell their products and perpetuate a deterministic conception of genetics, thereby exacerbating consumers’ distorted beliefs. (Gollust, Hull, and Benjamin 2002, 1766)

As in these examples, authors create rhetorical links between the complexity of genetics and the failure of for-profit firms to fully inform their customers, which serves to underscore the importance of involving a clinician in genetic testing. Given that medical professionals promote such a strict dichotomization between medicine and commerce, it is interesting to examine how they respond to DTC companies that employ clinicians. Indeed, while there are many similarities in how the leading firms operate, one of the primary differences between 23andMe and others was that 23andMe did not employ genetic counselors. This is likely due to the founder’s belief that people should have direct access to their DNA and that it is “paternalistic” to require the involvement of medical professionals.7 Most of the genetic counselor interviewees did distinguish companies based on whether they employed genetic counselors, pointing to their inclusion as evidence of “responsibility.” Mary Edwards, a counselor who had worked in nearly every area of genetics over her long career at an academic medical center, explained that “what we have to do is use the companies that are responsible. From the get-go, [DNA Direct] involved genetic counselors in the process, and that’s something that I think should be done. And most of the responsible companies do involve genetic counselors, and I think that’s what sets them apart.” Shelly Rhodes, a more junior counselor at a nationally renowned medical clinic, also used the language of responsibility in differentiating the leading companies based on their employment of genetic counselors. From a technology perspective and a data perspective, I think [Navigenics and 23andMe] are very similar. They’re testing the same types of things, and they’re providing the same types of information for people. I appreciate that Navigenics is taking more responsibility for helping people understand that information, because they employ counselors and try to work with physicians. What I don’t appreciate—I would disagree that we’re really at a point where we know that this is helpful information.

Even as she pointed to the importance of involving medical professionals in genetic testing, she still exhibited skepticism about the basic product for sale. In contrast to the genetic counselors, published statements and editorials rarely distinguished between companies on the basis of who worked there, and when they did, they exhibited little sympathy to companies with clinicians on staff. Consistent with the clear demarcation of medicine from commerce, the published items dismissed the possibility that company employees could provide unbiased counseling. “A conflict of interest may arise when the healthcare professionals involved in the counseling are employed by or are linked to the companies selling the tests. In this case impartial health advice might be compromised” (ESHG 2010). For this reason, several editorials suggested that

390   Rene Almeling clinicians involved in ordering and interpreting genetic tests be “independent” from the firms that offer such tests. The idea that “independence” is possible only in clinical practice stems from the distinction between medicine and commerce, where the latter necessarily corrupts what one would wish to do as a health care professional. Reflecting on her decision to join a nonprofit research project that was studying people’s reactions to personalized genetic reports like those offered by DTC companies, Lisa Harris exhibited this understanding of the differences between working in medical and commercial settings. I have a lot of significant questions about the utility of personalized medicine. If a position opened up at 23andMe or Navigenics, I don’t think I would have applied, because I don’t think I can sell that service. I feel like inherent in the purchase of a service, you’re paying for something that you, in theory, are getting a benefit from, and that’s what makes me feel a little bit uncomfortable with the for-profits. I don’t feel, at this point, that there is a clear benefit to receiving personalized results. That to me is the distinguishing factor: if a customer from [a company] or a participant from [my research study] asked me point blank “Is there a benefit to this?” I would say “We don’t know if there is. That’s why we’re doing a study.” I think I would probably be fired if I worked for a for-profit and said that.

In a number of venues and in a number of ways, then, clinicians consistently distinguished medical practice from market processes. There are only two editorials in the sample that blur the lines between these two realms, and tellingly, they are authored not by clinicians but by social scientists, which is in keeping with how the sociological literature has evolved. Social scientists writing in Nature point to “clear boundaries that no longer hold” including those “between academic knowledge and economic power” (Prainsack et al. 2008, 35; see also Javitt 2010, 817). Indeed, these exceptions prove the rule: that medical professionals worked to define the relationship between purveyor and recipient of genetic bodily knowledge as clinical and not commercial.

Protection By differentiating medicine and commerce based on the motivation to care for individuals, scientific and medical experts relied on a well-worn strategy of mobilizing altruistic rhetoric to assert the legitimacy of their jurisdiction (Freidson 1970; Starr 1982). More than mere rhetoric, though, experts sought to enforce their vision of the appropriate relationship between provider and recipient of genetic information by appealing to state regulators. In keeping with a long, paternalist history, medical professionals positioned themselves as “protecting” people, ensuring that they are not harmed by their own genetic information. The last lines of the AMA and ESHG statements use this language of protection: “Various medical professional organizations, patient advocacy groups, and federal agencies are working to protect consumers from the potential harms associated with DTC genetic testing” (AMA 2008), and “Legislators, regulators and policy

Contesting New Markets for Bodily Knowledge   391 makers are urged to protect the population” (ESHG 2010). Just what this protection entailed, though, changed in a few short years. In the first part of the decade, commercial firms were offering what the experts considered “pseudo-scientific” genetic tests for nutrition and cosmetics. But starting in the mid-2000s, some companies began offering genetic tests not unlike those provided in medical settings. As a result, the terrain of the jurisdictional dispute shifted, and so did medical professionals’ response to the market. Early statements calling for an outright ban on DTC testing morphed into discussions of how best to regulate such companies, a position that in and of itself acknowledges that they will continue to exist, a form of “settlement” in Abbott’s terms (1988). The shifting stance of medical professionals is apparent in the edits made to professional organization statements on DTC testing. In 2004, the AMA adopted a brief resolution that read in part: “Our AMA . . . will work with all appropriate other organizations to discourage direct-to-consumer genetic testing.” Just 4 years later, this statement was amended by deleting the language about “discouraging” DTC testing and replacing it with ways to create an appropriate regulatory environment for the advertising and provision of such tests (AMA 2008). Evincing a similar evolution in policy, the 2004 ACMG statement included the line, “genetic testing should be provided to the public only through the services of an appropriately qualified health care professional” (emphasis added). This was softened somewhat in the 2008 statement: “A knowledgeable professional should be involved in the process of ordering and interpreting a genetic test” (emphasis added). Starting in 2009, there was also a tonal shift in editorials published in scientific and medical journals. For the first time, authors began to consider the idea that DTC companies might be providing something useful. Those making this argument included some of the usual suspects, such as Craig Venter, an entrepreneurial scientist who founded Celera Genomics a decade before to race the federal government’s Human Genome Project. With colleagues, Venter wrote an opinion piece in Nature comparing test results from 23andMe and Navigenics. Although they found the accuracy of the “raw data” to be high, there was great variability in how the companies interpreted it to construct risk numbers for particular diseases. As a result, they offered specific “recommendations to improve predictions and support the continued growth of this nascent industry” (Ng et al. 2009, 724). It was not only entrepreneurs, though, who were noticing that some of the newer DTC companies were employing reputable researchers and using high-quality data. One EJHG commentary was subtitled “The Future Is Being Built Today” (Brand 2009). James Evans, editor of GiM, began an editorial by comparing the transformative power of personalized genetic testing to the Copernican Revolution and the atomic age. Following the hyperbolic introduction is this call to fellow geneticists: Perhaps, we should start by distinguishing between the DTC companies that use high-quality genetic testing and who seek to leverage published and peer-reviewed scientific evidence [. . . and those that] make pseudoscientific claims for the role of genetics in nutrition, cosmetics, and matchmaking. As an evidence-based field, we

392   Rene Almeling should indeed be at war with pseudoscience and fraud, but we should acknowledge that the leading DTC companies are using state-of-the-art SNP chips, legitimate analytic methods, comprehensive literature reviews, and advanced information technology. . . . [I]t is clear that they are fascinated by genetics and genuinely hope to harness the new synthesis of genetics and information technology to empower individual self-knowledge and promote health. Thus, our goals are closely aligned with theirs, and we should resist the urge to impugn their motives, simply because they lead for-profit companies. Although many of us may perceive their efforts as naïve from a medical standpoint, we must acknowledge that we are at the very start of the “genetic revolution” and admire their willingness to plunge into this new science. (Evans and Green 2009, 568)

Not only was Evans one of the first clinicians to call for a fair appraisal of the DTC companies, he went on to write several editorials pondering the appropriate role of medical professionals in relation to these companies. One can trace his changing perspective by the different adjectives that precede the term “paternalism” in his editorials. He concludes a 2009 piece by writing, “It is critical that the genetics community not be driven by excessive paternalism, a wish to inappropriately limit public access to information or simply by fear of change” (569, emphasis added). In a 2010 NEJM editorial titled “Preparing for a Consumer-Driven Genomic Age,” he asked: “How can we encourage patients’ involvement and autonomy yet establish appropriate safeguards while avoiding inappropriate paternalism?” By 2011, writing in JAMA, he concluded, “medicine is, to at least some extent, an inherently paternalistic endeavor simply because of an inevitable asymmetry in knowledge and because those who practice medicine are pledged to avoid causing harm” (2377, emphasis added). It is precisely this link between beneficent motivations and paternalism that clinicians use to undergird claims about protecting people. Thus, by the end of the decade, “protection” had come to mean regulating DTC companies, rather than insisting that medical professionals have full jurisdiction over this form of bodily knowledge. Pointing to the “fragmented” and “inadequate” regulatory environment, clinicians called on federal agencies to take action. They turned to the Federal Trade Commission (FTC) to regulate the claims made in DTC marketing materials, the Food and Drug Administration (FDA) to regulate the genetic tests themselves, and the Centers for Medicaid and Medicare Services to ensure that companies use certified labs. Clinicians also raised concerns about privacy protections for personal health information that do not extend beyond the health care system, particularly since some companies aggregate and sell customers’ genetic data to researchers. In addition, both houses of Congress held hearings on DTC testing, and the General Accounting Office investigated DTC firms in 2006 and 2010 (Wagner 2010). The FTC issued a consumer alert in 2006, and the FDA issued a cease-and-desist order to 23andme in 2013 (which it later rescinded in 2017, developments that are outside the scope of this chapter). From 2002 to 2012, then, scientific and medical experts evinced an evolving view of DTC genetic testing, moving from a stance of complete opposition to an interest in regulating those companies engaged in “state-of-the-art” science. This evolving stance reveals that where and how experts draw the line between medicine and commerce in

Contesting New Markets for Bodily Knowledge   393 markets for bodily knowledge changes over time. In this case, as the technologies of genetic testing changed, so too did the practices of commercial firms, altering the terms of the jurisdictional dispute and requiring new forms of relational work.

Conclusion In the first decade of the genomic era, scientific and medical experts reiterated a wellestablished rationale for retaining control over personalized genetic information: they alone are motivated by the goal of caring for people, not simply profiting from them. Decrying the commercialization of medicine, experts mobilized altruistic rhetoric and turned to regulators to enforce what they considered the only appropriate relationship between provider and recipient of genetic bodily knowledge: a clinician and a patient, not a company and customer. A central element of this relational work is the clear demarcation of medicine from commerce, a move that both reinscribes and legitimizes medicine’s jurisdiction over genetic testing. While the overall contours of this narrative will sound familiar to sociologists of medicine, a detailed examination of precisely how it is that medical professionals engage in relational work to fend off jurisdictional challenges reveals that this is not a static process. Even within this single case, medical professionals’ line-drawing shifted in response to changes in the kinds of tests for sale and the kinds of companies selling them. Traditionally, when medical sociologists study markets, they concentrate on large-scale macro dynamics between governments, citizens, and corporations (e.g., Light 2010). In contrast, Zelizer’s concept of relational work forges links between economic activities and cultural processes to allow for a meso-level analysis of how larger market dynamics can shape interactions, either among groups or individuals. This is one reason why Zelizer’s work has proved so useful for scholars studying the role of scientific and medical experts in “contested markets,” such as those in organs, eggs, and sperm (Almeling 2011; Healy 2006). Markets for bodily goods raise fundamental questions about what kinds of things should be for sale and who should be allowed to sell them, not unlike markets for bodily knowledge. Indeed, for decades, there have been ongoing battles between clinicians and patients for control over bodily knowledge, including who has the authority to produce it, who should have access to it, and what kinds of “education” need accompany it. Inherent in questions of relationality are questions of power. As when two individuals negotiate the form and meaning of economic exchange, shifting the focus to the relational work done by groups makes such questions all the more pressing, as groups influence the lives of many people. This is certainly true of the medical profession, which uses its legitimating connection with science (Freidson 1970) to generate detailed information about individual bodies, from blood tests to throat cultures and magnetic resonance imaging (MRI). In addition to the debate over personalized genetic testing, examples of medical markets for bodily knowledge include the appearance of home pregnancy tests in the 1970s and the lengthy struggle for an at-home HIV test. In contrast, DTC testing was not

394   Rene Almeling limited to any one demographic, and yet experts still made arguments about complexity and protection. Bringing medical sociology into closer conversation with Zelizer’s brand of economic sociology would allow for more fine-grained analyses of how medical professionals define and maintain their dominion over bodily knowledge. The category of “bodily knowledge” emerges in this analysis as an important kind of knowledge that deserves further comparative research. What kinds of bodily knowledge do experts seek control over and why? Which forms of bodily knowledge are controversial and why? What leads people to seek (or ignore) particular forms of bodily knowledge, and what are the norms for responding to such information? Is there a useful distinction to be made between bodily knowledge and bodily information? What is the relationship between technologically derived bodily knowledge and lived experience? And importantly, what are the political implications of how bodily knowledge can travel, between individuals and corporations, governments and employers? When it comes to tracking the development of new markets for bodily knowledge, sociologists will need to pay particular attention to how scientific and medical experts draw the line between medicine and commerce, making claims about what should be sold (or not) and by whom. While much has changed since the doctor-knows-best days of the mid-twentieth century, it remains crucial to examine when and how medical professionals’ relational work impinges on people’s access to their own bodily information, however uncertain that information may be.

Acknowledgments For comments on previous versions, I thank Nina Bandelj, Laura Carpenter, Dan Dohan, Joanna Kempner, Joanna Radin, Jennifer Reich, Sarah Richardson, Sara Shostak, and Fred Wherry. The Robert Wood Johnson Foundation Scholars in Health Policy Research Program provided funding for the research but had no involvement in study design, data collection and analysis, or writing the manuscript.

Notes 1. Quotes are from video and slides of Collins’s 2005 National Press Club presentation (https://www.genome.gov/13514107/personalized-medicine-how-the-human-genome -era-will-usher-in-a-health-care-revolution/). 2. The press release announcing one such company headlines “23andMe Launches WebBased Service Empowering Individuals to Access and Understand Their Own Genetic Information” (press release available from author). 3. Initially, 23andMe charged $999, dropped the price to $399, and charged $99 as of 2011. The fee for Navigenics was initially set at $2,500. Navigenics was bought by a biotechnology company and ceased offering DTC testing just a few years after opening. 4. Statements are available from the author. The American Congress of Obstetricians and Gynecologists, the American College of Clinical Pharmacology, and the American Society of Clinical Oncology also issued statements about DTC testing but are not included in the sample because of their limited focus (e.g., reproductive health, cancer).

Contesting New Markets for Bodily Knowledge   395 5. Rankings are based on 5-year impact factors from Journal Citation Reports. 6 . This project received approval from the University of California, Berkeley IRB. 7. Quote from a 23andMe board member in Time’s article naming “the retail DNA test” the top invention of 2008 (Hamilton 2008).

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chapter 23

M a nagi ng R isk y Bodies From Pregnancy to Vaccination Jennifer A. Reich

Increasingly, risk is perceived to be calculable and subsequently mitigatable. This logic emerges as new technologies identify patterns between the conditions of bodies and negative health outcomes. With new ways to surveil the body, risk can be calculated in hopes of enacting change that might treat, manage, or lower risk (Lupton 1999). We see examples of this in health education campaigns, home health testing, or commercial genetic screening (Annas and Elias 2014). Genetic evaluation may identify pre-existing risks, while lifestyle or environment may introduce new kinds of risks, depending on the behaviors and exposures of bodies (Shostak 2013). These new ways to calculate risk and surveil aspects of behaviors and bodies provide a means of judging, classifying, and disciplining bodies in hopes of normalizing them (Foucault 1995). These dynamics take health management out of the hospital, clinic, or even the doctor–patient relationship (Armstrong 1995) and place it within individuals’ daily lives and homes. There, health and the proper management of illness and risk become individual moral responsibilities (Crawford 1980) “to be fulfilled through improved access to knowledge, self-surveillance, prevention, risk assessment, the treatment of risk, and the consumption of appropriate self-help/biomedical goods and services” (Clarke et al. 2003, 162). Health no longer then is a state of wellness or illness, but rather, is something to continually work toward, manage, and control (Conrad 1992). As individuals become vigilant against risk, they transform into what Timmermans and Buchbinder (2012) call “patients in waiting” or what others term “the worried well” (Wagner and Curran 1984). Even when healthy, disease risk is omnipresent, requiring vigilance and active management of the body.

398   Jennifer A. Reich

Pregnancy, Parenting, and Risk Management The discourse of perpetual risk is universal in the United States, woven tightly into the fabric of education, health care systems, and public health promotion efforts. It is also in many ways most evident among women and children. Parents are defined as responsible for children’s outcomes and well-being, with the majority of responsibility falling on mothers. Cultural expectations are that parents generally and mothers specifically intensively invest in their children in ways that are labor intensive, financially expensive, wholly child centered, and self-sacrificing (Elliott, Powell, and Brenton 2013; Hays 1996). These expectations are policed by professional organizations and state programs, which have, since the inception of pediatrics, focused on monitoring children’s health and development and providing feedback to parents on how to manage their care better (Apple 2006; Halpern 1988). Yet, as seen in much scholarship, mothers are held responsible for children’s outcomes and are uniquely blamed for children’s illness, disability, or shortcomings (Blum  2007; Ladd-Taylor and Umansky  1998). Women’s decisions and choices before, during, and after pregnancy all present risk to their future children, with medical management and self-control the touted remedies (Flavin 2008; Waggoner 2013). What to eat or how to sleep, for example, become not just lifestyle choices but also health optimization strategies for women’s own bodies and for their fetuses. Ideologies and practices of parenting also reflect class privilege. If experts argue that raising children to become successful adults requires active management and adult intervention, often with the investment of significant resources, then some parents— those with time and money—are better situated to appear to be good parents, committed to their children’s success (Lareau 2003). Yet parental efforts to manage risk and protect children can also be seen as excessive. When parents are perceived as working too hard to protect their children or continue to intensively intervene as their children enter adulthood, they will be criticized for presenting different risks to their children’s growth, maturity, and resilience, as they are labeled “helicopter parents,” “snowplow parents,” or blade-wielding “lawnmower parents” (Hyman and Jacobs 2010). Parents’ consumption choices on behalf of their children represent their desire to adopt strategies they believe best protect their children from potential harm or, alternatively, improve their children’s health and bodies, which they see as pure and uncontaminated at birth. Technologies can be used in ways parents feel manage, support, or improve the natural state of the body (Turner 2007), or can be perceived as presenting risk of damage to the body (MacKendrick 2018; Reich 2016). Sometimes the same technologies are at different times imagined to be risk generating and risk mitigating, depending on context. For example, medical interventions in birth can be seen as disempowering to women or increasing risk to women and babies. Critiques of the medicalization of birth often highlight how births with lower technological intervention often end more “naturally” and with lower rates of surgical birth

Managing Risky Bodies   399 than are highly monitored technological births (Malacrida and Boulton  2013). Simultaneously, medical intervention into birth can reduce maternal mortality and has allowed for many newborns to survive conditions that might have otherwise been fatal (Hallgrimsdottir and Benner 2014). For women with low-risk pregnancies, home birth is no riskier than hospital birth (de Jonge et al. 2009), even as proponents of medically managed birth argue that technologies that monitor and assess risk allow those who might otherwise experience deleterious outcomes to survive (Grünebaum et al. 2015). Similarly, parents may imagine vaccines at different times to be beneficial or risky. When risk of infection is high, parents often seek out vaccines, while at other times, parents may see vaccines as presenting an unknowable long-term health risk, which when stacked against perceived low risk of infection, seems unnecessary (Reich 2016). These constructions of risk and intervention are powerful and ubiquitous, making them simultaneously omnipresent and invisible in their daily machinations. They also illustrate how risk is embodied and contextual. In the chapter, I explore specifically the intertwined meanings of embodied risk and medical management to show how they emerge and are managed by women in their daily lives. Specifically, I use the stories of two mothers to discuss the processes of evaluating risk and making decisions about pregnancy, birth, and childhood vaccines. Throughout, I illustrate how meanings of risk are contextual and emotional, and result from evaluation of bodies themselves.

Methods Qualitative data used in this chapter were collected during in-depth interviews with parents who oppose vaccines. These data are taken from a larger study that includes data from ethnographic observations and interviews with health care providers and other key informants (Reich 2016). I interviewed 34 parents who live in Colorado (29 mothers and 5 fathers) who challenge expert recommendations on vaccines for their children, either by opting out completely or by providing consent to some vaccines on a schedule of their own devising. Colorado has among the lowest rates of vaccination in the United States, and it remains one of the states with the highest rates of parents claiming nonmedical exemptions (CDPHE 2015). Despite epidemiological data that treat parental rejection of vaccines as dichotomous, in reality it is less clear. Parents constantly reassess whether vaccines are necessary based on shifting perceptions of need and risk. They consider each child in the family differently, at different ages. They may opt out entirely or consent to vaccines on a schedule other than that recommended by federal advisory bodies, state law, and physician organizations. Parents may consent to vaccinate their first child but not their other children, or they might deliberately choose vaccines that protect against a disease they perceive as serious while rejecting others. These strategies demonstrate how parents dynamically assess risk and benefit and make vaccine decisions based on their experience, research, or perceived needs of each child.

400   Jennifer A. Reich Parents who opt out of vaccines are different from those whose children are undervac­ cinated because of lack of resources or access to a regular care provider. Children with significant delays in receiving all vaccines are more likely to have mothers who are unmarried, don’t have a college degree, are black, and rely on publicly funded vaccine providers (Luman et al. 2005). In contrast, those who are unvaccinated by choice are most likely to be white, college educated, and have a family income over $75,000 (McNutt et al. 2016; Smith, Chu, and Barker 2004). These patterns underscore the ways resources shape parental strategies. Participants for the larger study were recruited using convenience sampling: by email, on listservs, or by others familiar with the study. Semistructured interviews lasted between 1 and 4 hours and were recorded and transcribed verbatim. Questions were open ended and explored a wide range of topics, including parental history, education, employment, health care experiences, relationship and family formation, family planning and pregnancy, parenting practices, interactions with health care providers and schools, sources of information and care for children’s health and vaccines, process of coming to question vaccines, and views of vaccination in general. Transcripts were initially coded and analyzed thematically, and then as patterns were identified, I employed what Charmaz (2002) calls constructivist grounded theory where data are collected and analyzed “to learn participants’ implicit meanings of their experiences to build a conceptual analysis of them” (678). In aiming to elucidate the ways these parents understand and manage risk and embodiment, I have chosen two cases for this chapter that are illustrative of broader themes that emerged throughout the interview data from parents. Like nearly all of the participants of the larger study, both women featured here are white. They are politically and religiously different, with one identifying as an Evangelical Christian who homeschools her children and the other as a self-identified political progressive who seeks out a private elementary school focused on an experiential child-guided curriculum. Yet in discussing risk, parenting, and vaccines, both women described their parental strategies in similar ways and draw on shared understandings of their children’s worlds and their ways to manage them. All names are pseudonyms.

Managing Risky Bodies and Motherhood Lauren Tate is a white married mother with four children. She identifies her Christian faith as important to her and as a driving force in her decision making. As a former home health care worker, Lauren feels comfortable with medical terms and systems. However, she opts not to consent to any vaccinations for her children and rejects medical interventions in favor of more natural remedies whenever she perceives it is possible. Her experience with four complicated pregnancies illustrates how she evaluates and manages risk in and out of health care systems. Lauren’s first pregnancy, she explains, was fine until 30 weeks (of the 40 weeks of pregnancy). “And then I just went into full-blown preterm labor. They couldn’t stop the

Managing Risky Bodies   401 c­ ontractions—they were every 2 minutes. And they couldn’t stop them. They gave me shot after shot after shot of Terbutaline,” a muscle relaxer used to stop contractions.1 After 24 hours of contractions, the obstetrical team noted that her cervix showed no signs of dilating. Realizing that further testing might increase risk of amniotic rupture, they sent Lauren home. Lauren endured painful contractions and unpleasant medications for those last 10 weeks of pregnancy, trying to manage risk of preterm labor on her own. “It kind of would ebb and flow. I was on complete bed rest and I was in and out of the hospital. I had to go to the hospital many times and get shots of Terbutaline and I couldn’t sleep so I was just basically delirious.” She remembers those weeks as agonizing, but ultimately successful: “The contractions were so painful they woke me up every 2 minutes forever and ever, but he made it full term.” Her first son was born healthy at a hospital after 1 hour of labor. Despite the physical misery she experienced, Lauren never questioned the importance of managing her body with the use of medical interventions and indeed takes pride in having successfully done so. She also sees herself and her treatment team as collaborators in her birth of a healthy baby. Her second pregnancy 2 years later was worse than her first. She again had contractions, but this time starting at 20 weeks, 10 weeks earlier than with her son, and before viability. Unlike in her first pregnancy, she was beginning to dilate. Filled with fear and facing the inability to manage the risk as well as she had with her first pregnancy, she recalls that she and her health providers identified their shared goal as simply getting to 28 weeks of pregnancy when the fetus would have a higher chance of survival. She again opted for high levels of medical management to get there. To maintain that pregnancy, Lauren was again physically miserable, “in and out of the hospital, on Terbutaline the whole time, bed rest the whole time.” Her husband who worked nights and weekends as the sole earner was able to manage a flexible schedule to care for their toddler son. Toward the end of that pregnancy, her mother came to help. She again remained on bed rest until 28 weeks, and then, when she did not go into labor, was cautious until she ultimately delivered a full-term baby. Her daughter was born after only 30 minutes of labor but spent 10 days in the neonatal intensive care unit (NICU) with trouble breathing. Disappointed and concerned, she accepted this technological intervention was necessary. After two difficult and medically managed pregnancies, Lauren came to see how health care providers perceived her body, not as facing risk, but as the source of risk, and as presenting inevitable risk to future offspring. She remembers physicians and nurses insisting, “ ‘Don’t have anymore.’ ” No one asked her what her reproductive goals might be, which included a commitment to having a large family. She felt pressured by medical staff. “Every doctor, every nurse [asked], ‘Well you’re never gonna have another baby, are you?’ ” Owing in large part to these admonitions, she decided she would not have another baby in a hospital. Instead, Lauren hired a midwife to plan a home birth for her third pregnancy, even as she describes it as “definitely a scary decision.” In choosing a midwife, she felt scared “because that means bucking the whole system and not using the Terbutaline because [midwives] can’t get prescriptions for Terbutaline.” Yet it also meant feeling supported and respected for her knowledge of her own body.

402   Jennifer A. Reich Lauren’s midwife, referred through her church, provided her prenatal care. She reportedly came to her house and “still did all the blood work and sonograms, [and] did the normal 20 week sonogram—where they measure everything.” Without access to prescriptions, the midwives used herbs, which she says worked, though she began experiencing contractions at 16 weeks, much earlier than in the prior pregnancies. With particularly strong contractions one night, Lauren chose to go to the hospital for help, a choice she regrets. “It was so bad, I went to the hospital and they just, like, freaked out on me.” Lauren understands that the staff perceived her to be someone who had not had reliable prenatal care, who had ignored medical advice by again becoming pregnant, and whose pregnancy they saw as too risky for home birth. Lauren explained to disapproving staff that despite contractions, neither of her children had actually been born premature. However, she felt the doctors and nurses refused to take her own assessment of her care seriously—her embodied sense of pregnancy—or to see her as capable of making informed decisions about how to manage risk. Having been through two complicated pregnancies, Lauren felt capable of evaluating what she most needed; they did not. At the hospital she received medications that temporarily stopped the contractions long enough to be discharged. Unlike many other women who voice certainty (Klassen 2001), Lauren was unsure that home birth was the right decision. She explains, “I was not comfortable with it, I was very nervous about it, and I felt like I was like stuck, you know? Between a rock and a hard place by making a decision.” She elaborates that on one side was a home birth, without access to medical interventions she might need, while on the other side, a hospital birth “meant going with doctors who were going to do nothing but just say, ‘Your baby’s gonna die, your baby’s gonna die.’ ” It seemed she could not have both medical tools to manage risk and emotional supports that might do the same. Lauren says she understood the risk of a preterm birth without medical intervention but felt she could manage it. She explains, “You know, I have faith and—there’s nothing I could do. It’s out of my control and if I’m panicking it’s going to make it worse.” Lauren’s third child was born healthy and 2 weeks late, at 42 weeks gestation, at home after a 20-minute labor. Lauren was committed to having a fourth child, which did not feel particularly risky after her success in her first three pregnancies. Yet this pregnancy carried different challenges. During the first month, Lauren was diagnosed with Celiac disease. Managing it seemed to prevent preterm labor, and this pregnancy progressed easily to 37 weeks. One night, Lauren had just finished putting her three young children to bed when she tripped on a toy and fell. Initially, she didn’t think much of it and went to bed. When she woke up several hours later, she thought her water had broken but discovered she was soaked in blood. Panicked, she went to the hospital. “I just thought the baby was dead at that point. And I go to [the hospital] and they’re like ‘No, your baby’s fine.’ ” The emergency room physician conducted an ultrasound, which he said did not show anything out of the ordinary. Knowing she had used a midwife for her prenatal care, the doctor told her, “You’re in early labor. Go home and have the baby.”

Managing Risky Bodies   403 Lauren explained that she knew something was wrong. Claiming credibility by invoking her experience as a home health care aide, she insisted, “No, you don't understand how much blood came out. I used to work in health care. I’m not exaggerating the amount of blood.” She told the doctor in the emergency room, “I just have a really bad feeling. You need to get the baby out. I’m 37 weeks.” Lauren requested that her midwife fax over all of her records “so that they could see that my due date was right. I had the 20-week ultrasound, I had all the paperwork in line.” The doctor, unconvinced, sent her home. Reflecting on how little credibility she had with the emergency room staff, she explains that medical providers seem to hold “the opinion that if you’re having a home birth you’re stupid [or] you’re trying to hide something.” In these interactions, Lauren’s lived experience with preterm contractions, her prior birth experiences, and her certainty something was wrong were devalued. Instead, she understands that medical providers viewed her as someone whose behaviors or choices increase risk and jeopardize their goals for a healthy baby. After leaving the hospital, Lauren’s midwives came over. She recalls their sense of panic as they felt certain she had suffered a placental abruption, where the placenta separates from the wall of the uterus, depriving the fetus of oxygen and nutrients and causing severe and potentially life-threatening bleeding in the pregnant woman. They debated whether to wait for a shift change or send her to a different hospital, but the bleeding stopped and the sense of urgency faded. One week later, the bleeding started again and Lauren returned to the emergency room only to find the same doctor working. She remembers him telling her, “You do not have a placental abruption. . . . Don’t come back unless you’re sitting in a pool of blood.” Lauren begged to be admitted to the hospital, where she could be induced. Unsuccessful, she called doctors who provided care during her first two pregnancies. As she recalls, “They all told me basically, ‘You’ve decided on a home birth. That’s your choice. You’re stuck with it.’ ” It is worth noting here that obstetricians face intense pressure for good fetal outcomes and have among the highest rates of malpractice insurance of all medical specialties, which underscores expectations they must manage fetal risk perfectly (Morris 2013). Although we cannot know why they approached Lauren as they did, these pressures logically predict against them welcoming a patient late in pregnancy who believes she is experiencing a serious complication. According to Lauren, none agreed to take her case. At 40 weeks of pregnancy, Lauren again began bleeding heavily. When she could not immediately reach her husband by phone, she panicked and called for an ambulance, an action she now describes as “the worst mistake ever.” When she arrived at the hospital, she was told that the baby was in distress and needed to come out. Already at 6 centimeters and caked in blood, she was told she was having contractions she could not feel. After a hospital delivery she had not planned, the obstetrician told Lauren that she had suffered a 25 percent placental abruption, where 25 percent of the placenta had detached from the uterus. Although she was relieved the baby was healthy, she felt persecuted as hospital staff confronted her in hopes she would confess how she had caused the abruption. In these

404   Jennifer A. Reich interactions, she could feel competing definitions of risk and blame. She recalls one nurse who rejected Lauren’s accounts, noting, “The only way that this could happen is for you to use cocaine or get in a car accident. You can’t get this by tripping and falling on the carpet.” Underscoring the nurse’s perception of risk, Lauren and her newborn son were drug tested, which, although negative, was noted in their medical records. Friends tried to convince Lauren that the test results exonerated her, but she felt humiliated. She remembers that the nurses “were watching me like a hawk because I’m sure they thought, you know, ‘She’s totally guilty. She’s gonna bolt,’ and they didn’t even leave me alone basically.” The baby was large for gestational age and his blood sugars were aggressively monitored, which is another form of risk management. Lauren had lost a significant amount of blood and was unable to stand unassisted but wanted to breastfeed. She objected to them taking the baby out of the room for several hours at a time or offering him formula. Once her baby’s pediatrician arrived and said he was well and could go home, Lauren in her weakened state discharged herself against medical advice. Lauren reflects on her experience: “It confirmed all my fears about hospitals.” Lauren’s relationship with medical care and physicians structures how she approaches vaccinations. In general, Lauren trusts her judgment more than she trusts the views of experts. Just as she identified what she needed in pregnancy and found medical providers dismissive of her self-assessment, she expects that they will disapprove of her health care choices so she only seeks care when she perceives it as essential for her children’s well-being. She has rejected all vaccines for her children, except the vaccine against tetanus because she believes that since the bacteria that causes the disease is in the environment, it presents a real risk. In contrast, other vaccines seem unnecessary, particularly since she homeschools her children, limiting their social contacts—and possible infection risk. She most particularly objects to the Hepatitis B vaccine, a disease transmitted through blood and bodily fluids, since she can’t see how her children who she is raising to share her Christian beliefs and lifestyle will face risk of infection. Lauren does not wholly object to medical care. She has taken her children for myriad procedures, including adenoid removal, casting of a broken arm, treatment for a scratched cornea, ear infections, strep infections, and digestive problems. Each of these conditions, like the demand for intervention when she perceived fetal distress in pregnancy, presents a risk she sees as legitimate and manageable with medical technologies. In each, she assesses risk and decides the correct course of action, which as a mother she feels uniquely qualified to determine. Even having refused virtually all vaccines for her children, she says she is open to revisiting that decision as information or circumstances change. She explains, “We are not, definitely not anti-, you know, we fall on the spectrum that we kind of see, ‘Well, what’s going to happen as the kids get older? Do we need to do something and vaccinate them?’ ” In these ways, vaccine decisions, like other health care decisions, require careful risk assessment and deployment of technologies as they are necessary to manage that perceived risk.

Managing Risky Bodies   405

Managing Future Risk and Present Uncertainty Katie Reynolds is a white mother of two who works hard to manage risk in her children’s lives. She describes herself as someone who reads everything to make decisions and, as a freelance writer, has the time and flexibility to do so. For example, when it took 6 or 8 months to conceive her first pregnancy, she decided she needed to become more deliberate in her efforts. Identifying her body (and not necessarily her partner’s) as the barrier to conception, she recalls, “I had the books out about, like, timing everything and I was like, ‘Okay, scientifically I should be able to do this in a month. So of course I was reading.” In her first pregnancy with her son Julian, she remembers working hard to educate herself. “I did everything, like, went out and bought What to Expect When You’re Expecting.” She followed the lead of friends who already had babies and sought care from the obstetrician they used. During her pregnancy, Katie says she read “a lot and researched a lot on childbirth” and began questioning the medical care she was receiving. Despite her efforts to gather formal information, she trusted her intuition more: “Intuitively it seemed to me that there’s—I felt like there’s way too much intervention and women didn’t have enough power in the process or enough say over what was happening to them and so I was sort of questioning some of the practices.” She hired a doula, a lay birth attendant, in hopes of having as “natural, as unmedicated of a birth as possible.” Despite voicing her rejection of medical interventions, Katie gave birth in a hospital. This choice represents both her resentment of medical systems, which she feels do not place women in control of their care, and her desire to access medical technologies and experts if a complication were to arise. In the former, she sees medical practitioners as imposing excessive assessments of risk and unnecessarily managing her body, and in the latter, sees those same practitioners and having skills and technologies to manage significant and unexpected risk. Her description of her labor experience illustrates her resentment of restrictions in the hospital she chose: Everything was fine, but it was like, I was in the bathroom sneaking things to eat during labor because I wasn’t supposed to be eating . . . so it was just kind of like a lot of sneaking around; they wanted to give me Pitocin to speed up my labor, and I didn’t want it, and there was a lot of people trying to intervene when I really didn’t want intervention.

In these examples, Katie sees medical efforts to manage risk—of long labors or ingested food that could create challenges should a caesarean section delivery become necessary—to be excessive and restrictive. As such, she challenged them, even as she chose to be in a hospital in case other risks became compelling to her. Katie works hard to make informed decisions. When she doesn’t conduct her own diligent reading, she sees those subsequent decisions as inferior ones. For example, Katie consented to have her son circumcised because her husband was insistent they do

406   Jennifer A. Reich so, a decision she regrets. “To me that was an example of where I sort of didn’t make a decision, let somebody else make the decision for me, and it didn’t turn out right.” A similar decision was made immediately after Julian was born. As she remembers, a medical care provider at the hospital informed her that her immunity against measles, mumps, and rubella was low and recommended a booster, given in one injection as the MMR vaccine, to protect her and her baby, as well as future pregnancies that could be devastated by exposure to measles and rubella. Katie did not hesitate. “I didn’t question that at all. I just sort of was like, ‘Oh, okay. Give me the shot so I can leave.’ ” Katie did not think about that vaccine until just before her son’s first pediatric appointment when she would be asked to consent to the first round of routine vaccines against childhood illnesses. “So then 3 months passed and . . . it was like the night before he was getting his first round of immunizations and I thought, ‘Oh, I should probably . . . I just felt like I had made a lot of decisions without really researching them.’ ” Katie turned to Mothering Magazine and its accompanying website, a publication that self-references as “the home for natural family living.” There she came across information that concerned her. I was always really worried about autism to begin with. There was some study that was done where children whose mothers had received the MMR vaccine while they were nursing, the child went on to develop autism in like 20 out of 25 cases in some study in England. . . . So I was freaking out about that, because I thought, here I am worrying about his vaccines and I totally agreed to do that and didn’t think twice about it.

She sees this decision as an example of a having failed to identify and manage risk. She explains, “Here I won’t take an aspirin while I’m nursing, but I did that, you know? So I was really freaking about it and calling everybody I knew . . . so at that point I was like, ‘I’m not getting him the shots.’ ” Katie’s mother attended that first appointment with her and, insisting that she worries too much, convinced her to consent to the first round of vaccines. Julian did not have an adverse reaction, which quelled her fears. Yet as Julian’s first birthday approached, Katie became increasingly concerned about the upcoming MMR vaccine. As she recalls, Now around this time one of my friends who was sort of into all these questions too told me she had read something and I guess the crucial thing with this study with the MMR booster and the mother was the child developed autism after receiving their own MMR booster. So that was sort of like the trigger. . . . At that point I said to my husband, “If I get hit by a bus tomorrow, the one thing you have to remember is do not give Julian the MMR booster” because I kept thinking, to me that was gonna be, that would be the trigger.

Katie believes her MMR booster carelessly introduced risk and, as a result, she must be vigilant. “Maybe if it hadn’t been for me getting the MMR, I would have done all [vaccines] and not questioned it.” As Katie perceives it, this intervention into her body introduced risk to her son’s body, as pregnancy and breastfeeding link their health and well-being.

Managing Risky Bodies   407 Katie works to manage her son’s health. However, his health issues suggest some are beyond her control. Julian developed “a lot of allergies, eczema, definite immune system issues,” all of which made Katie more cautious. He also, she explains, “has sensory processing dysfunction and potentially is on the spectrum for Asperger’s—for autism, although we haven’t really pursued a diagnosis.” As she considers his health, she notes, “He’s very high functioning, but he’s got some quirks.” These health issues, she imagines, place him at increased risk for autism, so she guards against a possible trigger. Katie’s description of her son communicates both affection and sadness. “My son is very, he’s probably ahead for his age intellectually or cognitively, but you know his language skills, his motor skills, and other things are a little behind.” She continues, noting the times he struggles. “Like, when he’s the only kid who doesn’t get invited to a birthday party at school or when people say, ‘Oh, why does he drool all the time?’ Or, you know, stuff like that.” Katie agonizes about how to make sure her son succeeds and perceives she is responsible for his well-being. She visited more than fifteen preschools before choosing one. She conscientiously manages her family’s diet and nutrition. She consults a variety of specialists, including a pediatrician who touts holistic care, an allergist, a craniosacral practitioner, and a homeopath. “I’ve tried everything to try to help him because he doesn’t—because he kind of falls through the cracks in terms of understanding what’s going on with him. Nobody can quite put their finger on it so that’s why I’ve tried different routes.” Katie’s perception that her son’s health is difficult to understand is notable in light of her resistance to having him diagnosed by pediatricians or special education service providers. Rather, she sees her son as a complex person and thus resents how diagnostic processes might place him in a proverbial box that masks his uniqueness. Evaluating situations to decide how to best manage risk for her son is, as Katie sees it, her responsibility. She explains, “I feel like I have to be his advocate and figure out what situation’s gonna work for him.” This extends to his education, diet, services, and health care. She fears vaccines could present risk to him but also fears some infectious diseases, which she understands are prevented through collective strategies to vaccinate. My preference would have been not getting any of them, granted understanding that that’s a purely selfish decision. But the decision I made is that, “Yeah, pertussis is dangerous, but if my child gets the measles it’s not the end of the world.” So it was not just weighing the risk of the vaccine, but weighing the risk of the vaccine versus the risk of [infection].

Katie describes her efforts to manage her son’s health to be all-encompassing and exhausting. She spends countless hours gathering information and expending significant emotional energy. Katie compares herself to her sister, who follows expert recommendations “by the book.” She describes the difference. “Every vaccine she got I had to agonize about it, agonize about what should I do? What should I not do?” She admits, “I feel like I get burned out.”

408   Jennifer A. Reich Some of this exhaustion emanates from her decision to take Julian to different providers who, she says, each ask for her son’s history in an effort to evaluate risk and find possible explanations for his challenges. In these efforts, they often focus on whether Katie created or failed to manage risk. She explains with exasperation, “I don’t want to hear anybody else, I don’t want to tell—or have to talk to anybody else or talk about his birth again or—‘Did you have a long labor? Did he have any birth trauma? Um, what did you do wrong when you were pregnant?’ You know, just going on and on, and usually it involves something I did wrong.” These lines of inquiry remind Katie that children’s outcomes are mothers’ fault (or occasionally, credit) with obligations to manage risk starting even before they have become mothers—during pregnancy or even before conception. These questions over time have shaken Katie’s confidence, making her wonder whether she did unknowingly introduce risk to her son. “When people are always asking you questions about it all too . . . you start thinking, ‘Well, maybe I—I thought I had a really easy pregnancy, but maybe I didn’t; let me think. Maybe I ate a lot of tuna at the beginning of the pregnancy. Maybe that was it.’ I think about the mercury in the tuna, you know?” Katie’s willingness to accept blame extends to her emotional state during pregnancy, which she fears may have primed her son for challenges. “One of the things I wonder with my son too is he was born a month after 9/11, and I was just a basket case the whole month before he was born.” Katie says she better managed emotions during her pregnancy with her daughter, born 4 years later, which may have contributed to her easygoing nature. “I tried to do so much yoga and stuff when I was pregnant with her. Maybe that did something.” Katie accepts that her behaviors, decisions, and feelings could have causally shaped her children’s health and well-being. As such, she insists on remaining vigilant and examining each decision closely. Yet she finds decisions do not become easier to make over time. You would think by that point I would have a clear view one way or the other, but I still haven’t a clue. I mean, I sit there and question, like, cod liver oil or fish oil, you know? What should I get? But what about the pollution of the oceans? I sit there and second-guess everything.

Katie’s laborious efforts to manage risk and her inability to do so perfectly are palatable and are most visible when she questions whether she could do more for her son. Yet she also seems certain that her intense efforts to make good decisions are important. Despite her uncertainty about the outcomes of her decisions, Katie nonetheless advises other mothers to trust their instincts, as she aims to do. She insists mothers should claim ownership of decisions and trust these decisions become easier over time. “Like for all the experts who will tell you what to do, just don’t do it. Do what works best [for you]. I feel like I’m much more intuitive about the way I make decisions now than I was [when Julian was born].” Katie sees herself as making good decisions, even as she agonizes over them, fearing that a bad decision will introduce risk to her children that she can’t manage. Yet she reiterates that mothers are best able to make these decisions for their children and should do so.

Managing Risky Bodies   409

Making Sense of Embodied Risk and Parenting Perceptions of risk are subjective, even as they are co-constructed by medical experts. Prenatal care, pregnancy, birth, and parenting are moments that demand calculations of risk and intense calls for bodily management. Women face scrutiny; they also demonstrate a willingness to evaluate their own choices and behaviors in terms of the degrees to which they manage or invite risk—both alongside and against medical guidelines. The experiences of both Lauren and Katie illustrate willingness to seek expert input and also an insistence on a right to reject expert opinions when they don’t resonate with their own perceptions and embodied experiences of risk, need, and benefit. Vaccines are a technology to protect against a hypothetical future exposure to bacteria or viruses that can cause disease. Children’s bodies are perpetually at risk of the most serious outcomes of exposure. In making vaccine decisions, mothers estimate the chance of encountering a disease that could have been prevented, the seriousness of the disease, and their ability to manage that illness should their children become infected. They then stack that against perceptions of vaccines as causing other health risks that may not be fully anticipatable. Despite volumes of evidence that vaccines are safe, parents often feel uncertain about those claims. As they see themselves as uniquely able to assess necessity and risk for their children, they sometimes reject vaccines. Lauren’s story illustrates how women trust their own embodied experience just as Katie’s story demonstrates the importance of mothers’ knowledge of their children’s needs, vulnerabilities, and risks that emerge within their bodies. From pregnancy through parenting, mothers, who are disproportionately responsible for health care decisions and almost entirely blamed for children’s illnesses, consider how to manage their own bodies and those of their children. Yet their choices are situated within larger understandings of medicine, health, risk, and necessity. Medical knowledge increasingly measures risk, beginning before conception (Waggoner 2013), and suggests innumerable ways to mitigate that risk through individual management, even as much disease risk is in fact environmental and beyond individual control (MacKendrick 2018; Shostak 2013). The result is that the body becomes not just susceptible to risk (and the beneficiary of management strategies) but the source of risk itself. In considering how the body carries these dual meanings, it is important to focus on how they are indelibly connected to perceptions of mothers as managers of risk, filtered through systems of gender, race, class, religion, and embodiment. Women’s increasing willingness to challenge health care providers and rely on their own judgment or intuition illustrates how expert knowledge becomes democratized and contested (Barker  2008). This often leads to competing understandings of the relationship between risk and the body and conflict in care strategies. Ironically, these tensions arise from public health education campaigns, which increasingly insist on greater individual responsibility for health and patient self-advocacy.

410   Jennifer A. Reich As children’s health outcomes are attributed to mothers’ behaviors, women will increasingly accept responsibility and make decisions independent of experts. Katie’s fears of autism and her perception that she is solely responsible for her child’s health illustrate this, as does Lauren’s efforts to manage pregnancy and birth outside medical systems, even as they both want medical systems to be available should they decide they need intervention. Yet the ability to move in and out of medical management highlights how those with the greatest amounts of social capital will be most able to define their own goals and exercise them to the limits of their resources. Katie and Lauren both had families in which they did not need to work for wages, giving them more time and resources with which to manage their children’s care. Vaccine refusal and demedicalization of pregnancy are two examples of how this manifests. While more privileged women may experience disapproval from providers, those with the greatest access to resources are still best situated to refuse medical expertise. For some with less capital, refusal will result in more formal social sanctions, including referral to criminal or civil systems of punishment (Flavin  2008; Reich  2005). In these ways, risky bodies—in ­definition and management—inevitably reflect individual social location and will thus be viewed, assessed, and managed unequally. Yet for all, the willingness to refuse the disciplinary gaze, which aims to measure and manage risk, will reveal the tensions between expert knowledge, power, and individual autonomy.

Note 1. Terbutaline is an asthma medication that causes muscle relaxation and has been used to limit contractions. In 2011, the FDA issued guidelines about its off-label use for preterm labor. See http://www.healthline.com/health/pregnancy/preterm-labor-terbutaline.

References Annas, George J., and Sherman Elias. 2014. “23andMe and the FDA.” New England Journal of Medicine 370, no. 11: 985–988. Apple, Rima. 2006. Perfect Motherhood: Science and Childrearing in America. New Brunswick, NJ: Rutgers University Press. Armstrong, David. 1995. “The Rise of Surveillance Medicine.” Sociology of Health & Illness 17, no. 3: 393–404. Barker, Kristin K. 2008. “Electronic Support Groups, Patient-Consumers, and Medicalization: The Case of Contested Illness.” Journal of Health and Social Behavior 49, no. 1: 20–36. Blum, Linda. 2007. “Mother-Blame in the Prozac Nation: Raising Kids with Invisible Disabilities.” Gender & Society 21, no. 2: 202–226. CDPHE. 2015. Colorado Kindergarten Immunization Survey (2013–2014). Denver: Colorado Department of Public Health and Environment. Charmaz, Kathy. 2002. “Qualitative Interviewing and Grounded Theory Analysis.” In Handbook of Interview Research: Context and Method, edited by J.  Gubrium and J. A. Holstein, 675–694. Thousand Oaks, CA: Sage. Clarke, Adele E., Janet K. Shim, Laura Mamo, Jennifer Ruth Fosket, and Jennifer R. Fishman. 2003. “Biomedicalization: Technoscientific Transformations of Health, Illness, and U.S. Biomedicine.” American Sociological Review 68, no. 2: 161–194.

Managing Risky Bodies   411 Conrad, Peter. 1992. “Medicalization and Social Control.” Annual Review of Sociology 18: 209–232. Crawford, Robert. 1980. “Healthism and the Medicalization of Everyday Life.” International Journal of Health Services 10, no. 3: 365–388. de Jonge, Ank, Birgit  Y.  van der Goes, Anita  C.  J.  Ravelli, Marianne  P.  Amelink-Verburg, Ben W. Mol, Jan G. Nijhuis, J. Bennebroek Gravenhorst, and Simone E. Buitendijk. 2009. “Perinatal Mortality and Morbidity in a Nationwide Cohort of 529, 688 Low-Risk Planned Home and Hospital Births.” BJOG: An International Journal of Obstetrics & Gynaecology 116, no. 9: 1177–1184. Elliott, Sinikka, Rachel Powell, and Joslyn Brenton. 2013. “Being a Good Mom: Low-Income, Black Single Mothers Negotiate Intensive Mothering.” Journal of Family Issues 36, no. 3: 351–370. Flavin, Jeanne. 2008. Our Bodies, Our Crimes: The Policing of Women’s Reproduction in America. New York: NYU Press. Foucault, Michel. 1995. Discipline and Punish: The Birth of the Prison. Translated by A. Sheridan. New York: Vintage Books. Grünebaum, Amos, Laurence  B.  McCullough, Birgit Arabin, Robert  L.  Brent, Malcolm I. Levene, and Frank A. Chervenak. 2015. “Home Birth Is Unsafe: FOR: The Safety of Planned Homebirths: A Clinical Fiction.” BJOG: An International Journal of Obstetrics & Gynaecology 122, no. 9: 1235. Hallgrimsdottir, Helga Kristin, and Bryan Eric Benner. 2014. “ ‘Knowledge Is Power’: Risk and the Moral Responsibilities of the Expectant Mother at the Turn of the Twentieth Century.” Health, Risk & Society 16, no. 1: 7–21. Halpern, Sydney Ann. 1988. American Pediatrics: The Social Dynamics of Professionalism, 1880–1980. Berkeley, CA: University of California Press. Hays, Sharon. 1996. Cultural Contradictions of Motherhood. New Haven, CT: Yale University Press. Hyman, Jeremy  S., and Lynn  F.  Jacobs. 2010. “10 Reasons Parents Should Never Contact College Professors: ‘Lawn-mower Parents’ Can Make Matters Worse for Their Kids at College.” U.S. News & World Report, May 12. Klassen, Pamela. 2001. Blessed Events: Religion and Home Birth in America. Princeton, NJ: Princeton University Press. Ladd-Taylor, Molly, and Lauri Umansky, eds. 1998. “Bad” Mothers: The Politics of Blame in Twentieth-Century America. New York: NYU Press. Lareau, Annette. 2003. Unequal Childhoods: Class, Race, and Family Life. Berkeley: University of California. Luman, Elizabeth  T., Lawrence  E.  Barker, Kate  M.  Shaw, Mary Mason McCauley, James W. Buehler, and Larry K. Pickering. 2005. “Timeliness of Childhood Vaccinations in the United States: Days Undervaccinated and Number of Vaccines Delayed.” Journal of the American Medical Association 293, no. 10: 1204–1211. Lupton, Deborah. 1999. Risk. New York: Routledge. MacKendrick, Norah. 2018. Better Safe Than Sorry: Precautionary Consumption in Everyday Life. Berkeley: University of California Press. Malacrida, Claudia, and Tiffany Boulton. 2013. “The Best Laid Plans? Women’s Choices, Expectations and Experiences in Childbirth.” Health 18, no. 1: 41–59. McNutt, Louise-Anne, Cristina Desemone, Erica DeNicola, Hassan El Chebib, Jessica A. Nadeau, Robert A. Bednarczyk, and Jana Shaw. 2016. “Affluence as a Predictor of Vaccine Refusal and Underimmunization in California Private Kindergartens.” Vaccine 34, no. 14: 1733–1738.

412   Jennifer A. Reich Morris, Theresa. 2013. Cut It Out: The C-section Epidemic in America. New York: NYU Press. Reich, Jennifer A. 2005. Fixing Families: Parents, Power, and the Child Welfare System. New York: Routledge. Reich, Jennifer A. 2016. Calling the Shots: Why Parents Reject Vaccines. New York: NYU Press. Shostak, Sara. 2013. Exposed Science: Genes, the Environment, and the Politics of Population Health. Berkeley, CA: University of California Press. Smith, Philip J., S. Y. Chu, and L. E. Barker. 2004. “Children Who Have Received No Vaccines: Who Are They and Where Do They Live?” Pediatrics 114, no. 1: 187–195. Timmermans, Stefan, and Mara Buchbinder. 2012. Saving Babies? The Consequences of Newborn Genetic Screening. Chicago: University of Chicago Press. Turner, Bryan S. 2007. “Culture, Technologies and Bodies: The Technological Utopia of Living Forever.” The Sociological Review 55, no. S1: 19–36. Waggoner, Miranda 2013. “Motherhood Preconceived: The Emergence of the Preconception Health and Health Care Initiative.” Journal of Health Politics, Policy and Law 38, no. 2: 345–371. Wagner, Peggy  J., and Pat Curran. 1984. “Health Beliefs and Physician Identified ‘Worried Well.’ ” Health Psychology 3, no. 5: 459.

chapter 24

The A rtifici a l Pa ncr eas i n Cy borg Bodie s Anthony Ryan Hatch, Julia T. Gordon, and Sonya R. Sternlieb

Introduction: Cyborg Bodies in Diabetic Biomedicine People living with insulin-dependent diabetes—commonly known as type 1 diabetes—are carefully trained in the arts of disease self-management: how to administer the glucosemetabolizing hormone insulin, how to count carbohydrates and pay close attention to the nutritional content of foods, and how to monitor their own blood sugars. Managing type 1 diabetes requires constant vigilance. The body’s demand for insulin varies from moment to moment, reflecting the tumultuous interplay between blood sugar levels and the practices that make up a human’s life, including eating, exercising, sleeping, and getting sick. Uncontrolled blood sugars create the mortal threat of long-term diabetes complications such as heart disease, kidney disease, blindness, and amputation, making life with diabetes very difficult. The additional psychological burdens of diabetes in everyday life can be just as consequential as the long-term physical effects. Although a biologic cure for diabetes that might alleviate these demands exists in a promissory and still distant future, a cybernetic cure, of sorts, for diabetes is already here. This potential cybernetic cure is the artificial pancreas. In September 2016, nearly 96 years after the discovery of insulin, Medtronic Diabetes, Inc., a global leader in diabetes biotechnology, became the first corporation to obtain Food and Drug Administration (FDA) approval for what is described as a closed-loop diabetes management system— an artificial pancreas. According to the FDA press release, “The MiniMed 670G hybrid closed-looped system, often referred to as an ‘artificial pancreas,’ is intended to adjust

414   Anthony Ryan Hatch, Julia T. Gordon, and Sonya R. Sternlieb insulin levels with little or no input from the user.”1 Three distinct biotechnologies together make up the artificial pancreas: a blood sugar sensor, an insulin pump, and a control algorithm that links the first two together in a closed-loop. It works by measuring glucose levels every 5 minutes through a subcutaneous sensor and automatically administering or withholding insulin from an externally worn insulin pump based on the sensor’s biofeedback. According to Dr. Jeffrey Shuren of the FDA’s Center for Devices and Radiological Health: “This first-of-its-kind technology can provide people with type 1 diabetes greater freedom to live their lives without having to consistently and manually baseline glucose levels and administer insulin.”2 As a group of prominent diabetes researchers claim, “the substantial advantage of closed loop control in the treatment of T1D [type 1 diabetes] is the opportunity to decouple the treatment from the patient’s life.”3 One key assumption undergirding this approach to diabetes treatment is that the day-to-day clinical labor of managing type 1 diabetes can and should be performed by machines and their software, thus temporarily liberating diabetics from the responsibility of disease management. The new 670G is composed of a body-attached blood glucose sensor that tracks glucose levels, a worn insulin infusion pump that communicates with the sensor, and features new software that integrates the two systems, which, until now, operated as independent albeit complementary technologies. The hardware of the 670G takes the form of a chic, black, hand-held smartphone-like device. The 670G holds insulin in a user-refillable syringe and delivers it into the body through a 18- to 43-inch plastic tube that connects to a short plastic cannula that is user-inserted subcutaneously using a separate (and mildly torturous) insertion device.4 The artificial pancreas relies on advanced computer hardware and software algorithms to function more autonomously from users. The 670G is the first device not to utilize a continuous basal rate, that is, a preset amount of insulin that is programmed to release every hour, as the basis for blood glucose regulation. Instead, the device automatically adjusts basal insulin delivery every 5 minutes in response to the biofeedback received from the glucose sensor. Users will only be responsible for inputting the amount of carbohydrates consumed into the “bolus wizard” of the closed-loop system, and for approving bolus correction recommendations made by the microcomputer. Aside from its unique basal algorithmic system, there are several other features that distinguish the 670G system from its open-loop predecessors. These include a new lowsuspension feature, which automatically stops insulin 30 minutes before a user reaches their preselected low blood glucose limit, then automatically restarts insulin when glucose levels recover—all without user alerts. The 670G hybrid system (see Figure 24.1) also features an updated glucose sensor (the Guardian Sensor 3) that Medtronic boasts as “the first and only continuous glucose monitoring sensor FDA approved and trusted to control insulin dosing.”5 The glucose sensors work through a user-inserted electrode under the skin that precisely measures the user blood sugar level every 5–15 minutes and transmits this data onto a wireless receiver, circumventing the need for routine finger-stick blood sugar tests. These sensors have the ability to project blood sugar trends and trajectory in real time (i.e., notifying a

The Artificial Pancreas in Cyborg Bodies   415 Figure 24.1. The Medtronic Minimed 670g hybrid closed-loop “artifical pancreas.” Note that the transmitter is not pictured here. Source: Julia Gordon (author).

patient whether and at what rate their blood glucose level is rising and/or falling). As listed on Medtronic’s website, this sensor, called the Guardian sensor 3 CGM, is “easy to insert,” “worn up to 7 days,” embodies a “flexible design that moves with your body for ultimate comfort,” and “knows at all times where your glucose levels are trending.”6 The hope is that the artificial pancreas will help free diabetics from the heavy burden of diabetes self-management and improve their quality of life by making it seem as if they did not have diabetes, at least for the time that the artificial pancreas is doing its work on and with their bodies. Already, several clinical trials have shown the benefits of using the artificial pancreas as compared to other methods of insulin delivery.7 The main outcome measures for blood sugar (glycemic) control in people with type 1 diabetes are the Hemoglobin A1C test, which reflects an individual’s average blood glucose levels over a 3-month period, and continuous glucose monitoring (CGM) metrics, which include data about the average time spent and percentage of glucose sensor readings observed within a desired target range.8 According to a trial presented by Medtronic in the American Diabetes Association Scientific Sessions, compared to a 2-week, “openloop” phase, adolescents and adults spending 3 months on the hybrid closed-loop system saw a 0.5 percent reduction in HbA1C, a 44 percent reduction in time spent with low blood glucose, and an 11 percent decline in time spent with high blood sugar levels (>180 mg/dl).9 A meta-analysis of twenty-four outpatient randomized controlled studies showed that the average time-in-target glucose range was 11.1 percent higher with artificial pancreas systems compared to open-loop insulin pump therapy.10 Several studies have also begun to examine the psychosocial and emotional benefits of artificial pancreases, including how the closed-loop system may reduce fear and anxiety ­surrounding hypoglycemic (low blood sugar) episodes and minimize psychological stresses of calculating insulin doses at mealtimes.11 Still, data published by the T1D Exchange clinic registry show that even with advanced open-loop pump technologies, only 20–30 percent of adults with type 1 diabetes achieve glycemic targets.12 Poor blood sugar control can be due to miscounting carbohydrates at mealtime, lack of exercise and adequate sleep, as well as acute stress responses that insidiously occur beneath the level of human consciousness.13 The artificial pancreas also raises questions about who should control diabetes and how that control ought to be achieved. At great expense, diabetics are compelled to purchase these cyborg technologies that promise to control their diabetes for them and to

416   Anthony Ryan Hatch, Julia T. Gordon, and Sonya R. Sternlieb surround themselves with clinician-technicians who troubleshoot system hardware and/or software malfunctions.14 The artificial pancreas is expensive. A diabetic person without insurance would have to pay $7,899 retail for the new MiniMed 670G, $2,222 for the continuous glucose sensor, and thousands of dollars a year more for the supplementary technologies required for proper functionality (e.g., insulin, infusion sets, antiseptics, and adhesives, etc.).15 Through the artificial pancreas, we can see the horizon of a cybernetic world in which we are unevenly and paradoxically moving toward diabetes without diabetics. These new technologies promise a “diabetes-free world” (or at least the illusion of one) through the creation of a new form of embodiment in which patient agency over disease management shifts toward a new and closer relationship with cybernetic biotechnology. Corporate device makers and federal regulators frame the artificial pancreas as a putative cure for diabetes whose curative powers derive from its closed-loop design, which effectively closes the diabetic out of the loop of his or her own body. This closed-loop hardware and closed-source software design offers the cyborg-patient low levels of agency and no ownership and control over his or her own data; it also requires access to health insurance (or disposable income) in order to procure and use the technology. Yet some diabetics are not comfortable being closed out and have the economic means and technological prowess to insert themselves back in the loop. Well-educated, tech-savvy diabetics have been fashioning their own fully automated do-it-yourself (DIY) artificial pancreases for years, relying on small-scale manufacturing, open-source software, and inventive repurposing of corporate hardware. In doing so, they challenge the idea that type 1 diabetics have to accept a cybernetic future controlled entirely by private medical devise corporations and closely regulated by the FDA. We also trace the artificial pancreas as it emerged out of this alternative pathway for biotech innovation through a group of DIY “makers” who have redesigned corporate hardware to create their own DIY artificial pancreases. In contrast, this structure features open-loop hardware and open-source software for the pancreas. The DIY artificial pancreas offers the cyborg-patient a more robust of agency but also requires high levels of intellectual capital to hack the devices and make the system work safely. We argue that this effort to increase agency, radically democratize biotechnology, and expand information ownership in the DIY movement is characterized by patterns of constrained by the same problems that define corporate pathways. What might it mean for some diabetics to be “closed” out of their own bodies in terms of agency, ownership, and empowerment while others are denied access wholesale? As Sarah Nettleton asks about cybernetic technologies, “is it my body if parts of it belong to someone else?”16 Who should have access to, own and control these cybernetic technologies? The artificial pancreas and its associated data are part of the body, coconstituted by human flesh and patented circuitry. What are the implications of this new technology for patients’ sense of agency, structures of biotech ownership, and patterns of equity and access to advanced diabetes health? In this chapter, we explore the emergence and diffusion of the artificial pancreas aim to document these emerging biohistories of the artificial pancreas as cyborg technologies.

The Artificial Pancreas in Cyborg Bodies   417

Biohistories of Cyborg Technologies To explore these questions, we rely on Michel Foucault’s notion of biohistory for methodological orientation. In his 1974 lecture titled “The Birth of Social Medicine,” Foucault described biohistory simply as “the effect of medical intervention at the biological level.”17 In typical Foucauldian fashion, there is no exact prescription for what processes of research and interpretation this might entail. He does suggest biohistory involves tracing “the imprint left on human history” by medical intervention and asking what social mechanisms allow for the retreat or emergence of disease. To understand this particular imprint, Foucault speculates that we should produce more knowledge about “the evolution of relations between humanity, the bacillary or viral field, and the interventions of hygiene, medicine, and the different therapeutic techniques.”18 We interpret this to mean that in writing b ­ iohistories, we should describe how technologies intervene in the relationships between humans and nonhuman biological life, where technology and the body connect in a biological field. Our process for collecting and interpreting evidence was based on these principles, directing us first to the scientific and medical journals in which descriptions of ­models of the artificial pancreas were presented and described to scientific and patient audiences. In the words of sociologist Troy Duster, to successfully interrogate science’s role in producing ideas about hierarchy and power, scholars need to “go to the site of knowledge production.”19 Biohistories have to analyze new hybrids of organisms, machines, and software. Science, technology, and embodiment scholars have not yet investigated the artificial pancreas as a site for analysis how the borders of the treatable body transcend the physical, extending to both the attached machine and distant data, but they offer key theoretical insights that we bring to bear on this case. In particular, we can better chart the biohistory of the artificial pancreas through Donna Haraway’s concept of the cyborg, a multifaceted hybrid of machine and organism constructed out of material reality and science fiction.20 Haraway uses the figure of the cyborg to describe new modes of subjectivity, ontology, and relationality emerging from new relationships between bodies, machines, software, and data.21 Cybernetic technologies are “integrated into the human body [and] not only restores lost function but enhances the anatomical, physiological, and information processing abilities of the body.”22 Additionally, the breakdown between organism and machine within twenty-first-century technological devices has “made thoroughly ambiguous the difference between natural and artificial, mind and body, self-developing and externally designed.”23 Cyborg theory requires that we blur the boundaries between organism and machine, subjectivities and software, and ontologies and hardware, imaginary cultural constructions designed to justify modern forms of cultural and scientific domination. For many patients whose health conditions require care with cybernetic technologies, the necessity of seeing both a physician and technician maintains the ideas of a separable body and a device, rather than the reality of one hybrid cybernetic system. In

418   Anthony Ryan Hatch, Julia T. Gordon, and Sonya R. Sternlieb her analysis of the implantable cardioverter defibrillator (ICD), Nelly Oudshoorn centers the patient’s experience as a cyborg and examines the relationship between individuals, their implanted devices, and the physicians and technicians who manage their health.24 The work of caring for cyborg bodies requires both experts adept at treating the organic human body (i.e., doctors) as well as those focused on the body’s new, nonflesh components—the technicians trained to communicate with, and alter the operation of, the computerized, implanted pacemaker. The ICD patients Oudshoorn analyzes must listen to the beeps their devices emit in order to know when batteries require changing. Additionally, they must listen to the new bodily sensations created by the imperfect merging of flesh and wires—such as increased fatigue—interpret these new material realities, and assertively communicate them to the ICD technicians, who use this information in conjunction with data independently generated by ICDs to adjust the ICD for better functionality with the hybrid body’s organic components. In this way, the cyborg experience “may involve conflicts between the agencies of bodies and internal devices as well as struggles between different ways of knowing hybrid bodies.”25 The patient, technician, and physician see the body through different gazes, which are inextricably linked to particular ways of knowing and experiencing the body. Negating the experiences of the patient as unimportant to the maintenance of the device and disease management can have deleterious clinical consequences. Patients may lose the role of guardianship over their devices and, more insidiously, they may experience diminished understanding of their own bodily processes and poorer health. As patients learn to listen to and treat their machinated organs—whether implanted pacemakers or artificial pancreases—their experience as a living organism is changed. Lucie Dalibert shows that spinal cord stimulation (SCS) users take on even greater new physical forms of bodily and remote engagement with their devices.26 Users can interact with their device through body movements, controlling stimulation intensity physically, rather than through screens or health care professionals. Patients who use this form of control experience their device as “embodied in the body schema” as part of, rather than distinct from, themselves.27 Here, the device successfully integrates into the cyborg organism and does so by erasing awareness of itself as a foreign object and reconstructing a degree of wholeness. SCS users adopt a new language of gestures and movement that affects the behavior of the device, which in turn responds to these motions. Dalibert writes that “for the somatechnology to become (i.e., to be experienced as) transparent implies getting in touch—becoming intimate—with one’s bodily materiality.”28 We approach patient agency in a number of ways that draw from the insights of Oudshoorn, Dalibert, Nettleton, and others. First, agency reflects the extent of control patients feel over their own bodies by being attuned to their device as it responds to their body’s intimate metabolic needs and disease process. Patient agency reflects the importance of the individual being able to know and trust their own sensory perceptions over that of the machine, as well as how to engage with their device so that it ­functions optimally. As Quintal et al. (2018) note, “by relying on the artificial pancreas for clinical decisions, patients may become dependent on the AP and vulnerable to ­malfunctions, especially if they expect the AP to resolve all technical issues without

The Artificial Pancreas in Cyborg Bodies   419 external intervention.”29 After starting the artificial pancreas, patients may initially have greater trust in their own sensory experience and intuition compared to the software embedded within their attached device and will consequently exert close oversight of the device’s operations.30 We aim to illuminate how corporate manufacturers and DIYmakers frame the issues of patient agency, lived experience, and disease management. Our analysis of the DIY maker movement further aims to highlight the importance of perceived control to many patients. Before crafting the two biohistories, we want to clarify distinctions between agency, ownership, responsibility, and access. Responsibility for disease management refers to where the onus for disease onset and daily care lies (i.e., in the patient, the environment, the machine, the technician, or the clinician). It is a social, as well as metaphysical or empirical concept.31 In contrast, agency refers to the degree of control an entity or individual has over daily control. Quintal et al. (2018) state that agency designates a person’s ability to act autonomously and voluntarily and “it is considered a finite resource,” meaning that patients with type 1 diabetes exert part of their agency over their disease control and the remaining part of their agency over other daily activities.32 Ownership is a legal term that dictates who has the right to use, share, and manage clinical and technological data produced by an individual’s device.33 Finally, access (or lack thereof) addresses how high financial costs and restricted patient selection criteria for clinical trials and other clinical programs (i.e., by age or HbA1 number) inadvertently excludes certain socioeconomic and racial groups from using and shaping artificial pancreas hardware and software designs.34

Closing the Loop: The Corporate Artificial Pancreas How did we get to the corporate artificial pancreas? The first attempt at developing a portable, closed-loop insulin pump was made in 1963 by a Los Angeles–based private physician named Arnold Kadish. Kadish’s device took the form of a large, microwavesized backpack that delivered both insulin and glucagon through intravenous delivery. Designed to act as a closed-loop blood sugar regulatory system, Kadish’s pump concept was 50 years ahead of its time. In this early device, the closed loop was achieved using an adapted lab “Autoanalyser” to measure blood glucose levels, a venous blood circuit, and a servo-mechanism pump that communicated with the other pump features when blood sugar levels went out of range.35 Kadish’s design concept was an important innovation, but the overly complex and bulky hardware design made it impractical for everyday use, as well as an impossible marketing challenge. Over the next decade, other systems were developed that utilized combinations of intravenous insulin and glucagon distribution systems. Of note, the very first computerized closed-loop system—The BioStator—was developed in 1974 by Indiana-based

420   Anthony Ryan Hatch, Julia T. Gordon, and Sonya R. Sternlieb Miles Laboratories. As described in the Journal of Clinical Chemistry, the BioStator system was a “computerized, modular system designed to simulate the function of the normal beta cell in the regulation of blood glucose through use of glucose-controlled insulin infusion.”36 The instrument consisted of an analyzer pump to control the continual withdrawal and mixing of the blood, a glucose analyzer for the continual online analysis for blood glucose, a computer programmed with a set of algorithms that calculated the amount of insulin and dextrose in relation to blood-glucose concentrations, a computercontrolled infusion pump to deliver insulin and dextrose, and a printer/plotter that provided a minute-by-minute record of glucose concentration and the amount of insulin infused. Like Kadish’s pump, the BioStator’s imposing physical size and nonuser-friendly hardware inhibited widespread use and commercial production. As such, it was only used and tested on a small scale until the early 1980s. The intravenous ­delivery system was impractical due to the risks of septicemia and thrombosis induced by extended continual IV therapy use.37 Still, the concept and promise of a closed-loop system that utilized both insulin and glucose administration drove diabetes biotechnology research and development for years to come. In the late 1990s, the development of a commercially viable continuous glucose monitoring sensor (CGMS) served as the second essential component of a closed-loop system. In 1995, Gough Armour proposed a catheter-like sensor that was placed into the vena cava for up to 3 months at a time.38 However, this system posed similar risks to that of the IV pump delivery system, including risk of clot and vascular damage, and thus was never translated into commercial ventures. The first commercially available glucose monitor with an accurate implantable subcutaneous sensor was released by Medtronic MiniMed in 1999. In the past few decades, other companies have developed their own devices, such as the Guardian, Guardian RT, REAL-Time, STS, SEVEN PLUS, and FreeStyle Navigator. The main obstacle faced by technicians in achieving accuracy in these sensors is troubleshooting the lag time between “real” blood glucose levels and that of the output reading, which results from the subcutaneous implant being inserted into the interstitial fluid, rather than the bloodstream. Consequently, users still need to calibrate the device several times a day with a separate blood sugar meter to ensure the accuracy of the output reading. The software algorithms that link the insulin pump and blood sugar sensor are the third key component of the artificial pancreas. Historically, algorithms have been evaluated for their ability to mimic healthy insulin action as closely as possible. The initial 1974 report about the BioStator closed-loop system noted that “the heart of the BioStator system and one of the keys to successful feedback control of diabetics is obviously ‘the glucose analyzer,’ ”39 the glucose-clamping algorithm used to detect and alert the presence of abnormal blood sugar levels. Clemens et al. describe the mechanism of the BioStator algorithm as “interrupting the physiological glucose–insulin relationship by placing a user’s blood glucose concentration under an investigator’s control, for quantification of the pancreatic beta-cell response during hyperglycemic clamps. . . . This algorithm adds simplicity and precision to the glucose clamping procedure and reduces operator effort to a minimum.”40

The Artificial Pancreas in Cyborg Bodies   421 Patient

Diluted Blood

Analyzer Pump Module

Glucose Analyzer

Computer

Insulin Dextrose

Printer Plotter

Infusion Pump Module

Figure 24.2.  Block diagram of Biostator and computer control. Source: Fogt et al. 1978. “Development and Evaluation of a Glucose Analyzer for a Glucose-Controlled Insulin Infusion System (Biostator).” Journal of Clinical Chemistry 24, no. 8: 1367.

Beyond its technical rhetoric, this description makes explicit the process through which the algorithm supersedes important aspects of user agency. In 1982, the goal of the closed-loop BioStator was to physically and symbolically remove diabetes from the user body so that it could be more easily monitored and intervened on by practitioners (i.e., “placed under an investigator’s control”). The overall strategy of the BioStator was to “reduce operator effort to a minimum.” By communicating directly with the insulin pump, the blood sugar sensor hopes to transfer decision-making power from patients into the “brains” of the machine (see Figure 24.2). By 2025, the United States insulin pump market alone is estimated to be worth over $9 billion.41 This market is now dominated by four companies (Animas, Medtronic, Insulet, and Roche Diagnostics) with several smaller firms in play. Until the late 1980s, there were relatively few patients using insulin pump therapy, which was mostly reserved to treat unstable patients with erratic blood glucose control.42 Following the publication of the Diabetes Control and Complication Trial in 1993, which showed significantly improved glycemic control among enrolled pump users, the pump became viewed as an advantageous system for all diabetics. Between 1993 and 2000, pump use had increased from 15,000 patients to over 81,000 patients.43 Currently, there are an estimated 130,000 pump patients in the United States, and around 200,000 globally.44 Only 40 percent of the world’s type 1 diabetics use insulin pumps and less than 15 percent using continuous glucose monitors.45 Structures of race, gender, class, sexuality, ability, and nationality shape unequal access to advanced diabetes biotechnology and, hence, new cybernetic identities. Studies conducted in the United States, the United Kingdom, and Europe show that any diabetic who is not a member of the dominant racial/ethnic group in a given national society is substantially less likely to wear and potentially benefit from advanced insulin delivery systems like pumps.46 One retrospective study showed that fifty-six percent of white diabetic children used insulin pumps compared to only twenty-five percent of black diabetic children, even after controlling for socioeconomic status.47 Only some diabetics are eligible for the most advanced dig­ital

422   Anthony Ryan Hatch, Julia T. Gordon, and Sonya R. Sternlieb diabetes upgrades. The diabetic cyborg is situated in a matrix of domination structured by intersectional formations of ablest, white supremacist, capitalist heteropatriarchy.48 The role of science, technology, and medicine in creating and upholding these institutions of power has been well documented.49 Not all cyborgs are created or treated equally and we don’t all have equal chances of being integrated into global cybernetic circuitry.

Opening the Loop: The DIY Artificial Pancreas Type 1 diabetes are pushing back against these forms of exclusion that accompany the corporate artificial pancreas. The DIY artificial pancreas is a new, ostensibly more democratic and more accessible, cyborg technology.50 According to health care strategist and type 1 diabetic Dana Lewis, there are now over 400 type 1 diabetics living with selfconstructed artificial pancreases comprised of a mini computer, battery pack, continuous glucose monitor, and insulin pump, all of which still must be purchased from private device companies. Lewis started the blog OpenAPS (Open Artificial Pancreas System), where followers read her updates and find resources for building their own closed-loop, automatic systems.51 Still, Lewis didn’t just make an artificial pancreas—she started a whole health movement. This DIY movement—and the so-called maker culture it was born out of—appears to enable inventor-diabetics to realize their own powers of creation and inventiveness, to shake off their dependence on corporations, and loose the bonds of the disenfranchising forces that restrict health care access, at least to those with the means to afford it. In doing so, Lewis has begun to collapse the distinctions between the patient and technician. The DIY movement sees educational empowerment—in this case, the ability to build, design, and hack one’s own cyborg technology—as a key pathway through which diabetics can redefine agency on their own terms. The DIY movement sprang from the larger DIY technology movement, whose heavily computer-savvy members refer to themselves as “makers.” It’s an amusingly blasphemous term, one that seems ironically quite appropriate for the DIY artificial pancreas makers, who are building a life-saving organ. Lewis and Leibrand’s maker identity is evident in the public brand they have cultivated online; Lewis was a featured panelist in a live-streamed TEDMED panel entitled “More on the Maker Movement—How to Get Involved.”52 An interview with Lewis conducted by the Mayo Clinic’s Center for Innovation discusses Lewis’s journey “from maker, to hacker, to inventor.”53 That Lewis self-identifies as a maker is clear, and it seems fair to assume that the philosophies that pervade the maker movement are likely to be present in the work she does leading the DIY pancreas (DIYPS) movement. If the maker movement had a holy book, it might just be MAKE magazine. MAKE exists primarily to sell Maker Media products, which include vast arrays of microcomputer

The Artificial Pancreas in Cyborg Bodies   423 parts, as well as drone kits and silkscreen printing setups. Published by Maker Media, which claims to be “leading the maker movement,”54 MAKE promotes ideas of “self-reliance, innovation, and individuality within a context of environmentalism and nationalism in ways that evoke long-recognized and widespread narratives of technological utopianism within American culture.”55 Narratives of self-reliance and individuality undergird maker culture and the OpenAPS movement. Writes Lewis, “everything in the OpenAPS community . . . is intended to be part of a set of tools to support a self-driven DIY implementation and any person choosing to use these tools is solely responsible for testing and implementing these tools.”56 Legal concerns may have necessitated Lewis’s statement. Nevertheless, it is important to note how individualism, self-reliance, and the value in shaping one’s own destiny can crowd out analysis of privilege and equity and effectively block certain groups from realizing this utopian vision of democratized technology. It is likely that the presence of these narratives contributes to or is a consequence of MAKE’s subscriber base, which is 90 percent male, 75 percent college educated, and of above-average socioeconomic status.57 Individuals who don’t identify with a narrative that doesn’t make room for their lived experience may feel unrepresented and unwelcome in MAKE and other physical and virtual maker spaces. As Ann O’Kane Aisling writes, “hacking is not practiced in a vacuum independent of political, social, or economic forces and there are other barriers for people that can make them feel excluded from the maker culture, for instance, feeling intimidated about getting involved in ‘hacking.’ ”58 MAKE fails to address these narratives. As long as access to hacking knowledge and maker culture is a prerequisite for accessing, say, artificial pancreases, then the exclusivity of hacking and maker cultures denies access to life-saving technologies. Exclusion is not a goal of the maker movement, but it is a problem the maker movement reproduces nonetheless. Aisling further points out that “despite the availability of open-source designs, the majority of people who would benefit from personalized self-care tools do not have the relevant technical expertise to participate in this DIY maker culture.”59 Restricted access to health care technologies for less well-educated, less wealthy, and otherwise marginalized groups is not, of course, a new phenomenon. However, the pathway through which this form of disenfranchisement is now expressing itself is new. Masked behind a veneer of accessibility, individual innovation, and creativity, the idea that this technology is freely available to all with the ingenuity to make it hides classic disenfranchising factors behind a veneer of egalitarianism. The notions of individuality and self-reliance that define maker culture and the DIYPS movement are classic neoliberal values. As Lewis and the DIYPS movement decide that the corporate and governmental means of innovation, production, and regulation have or are failing them, the responsibility for the development and safe usage of these devices falls onto the private individual. Though she expressed the desire to work with FDA regulators and corporate medical device manufacturers, Lewis and DIYPS have a large philosophical disagreement with the FDA. The form of information sharing Lewis encourages—the free distribution of as much code and advice as is morally permissible—is at odds with the patent-protection and liability bylaws that govern FDA procedures and biotechnology production. When Lewis first began to make waves

424   Anthony Ryan Hatch, Julia T. Gordon, and Sonya R. Sternlieb with the development of a personal app that sent her glucose monitoring data to her and her fiancé’s phone, the FDA stated that “as soon as they start distributing that or making it more broadly available, that’s where we become more concerned.”60 The issue of intellectual property rights has particular relevance for the artificial pancreas because medical device developers and the FDA have conflicting views over data, design, and control compared to the DIY artificial pancreas makers. This hybrid of organism and machine generates tension around the issues of power and authenticity, data and ownership. The doctors of cyborgs, who must treat the devices as well as their human hosts, can allow devices and the data they produce to replace the human patient to a certain extent.61 As Julia Grew and Mette Svendsen show, ICD patients are rendered into wirelessly transmitted data; as their data become more real, the data serve as a new site for physician intervention. The ICD patient becomes “a thorough cyborg: an implosion of organic body and machine, bodily experience and data.”62 The ICD patients Grew and Svendsen spoke with frequently felt a diminished sense of authority over their bodies and that their pre-cyborg physical identities were being superseded by their data shadow-selves, especially in “clinical encounters in which power and authenticity are negotiated.”63 This is an especially pertinent issue in the context of surveillance, given the question of who owns the data, and who owns the software and hardware that produces the data. An FDA advisory report on the development of interoperable medical devices, which could more easily be “hacked” by users like Lewis, advised manufactures to ensure that the labeling on their devices stated that “use of the electronic data interface is reserved for representatives of the manufacturers” and that “if the interface is only meant to be used by the manufacturer’s technicians for software updates or diagnostics, this should be stated in the labeling in an appropriate way that prevents access by other users.”64 These issues of data and intellectual property also raise questions about bodily autonomy and ownership—to whom do these devices belong? Should they be controlled by the bodies within which they exist, by their manufacturers, by nonpatient technicians? While Lewis and the FDA both want to ensure that hackers and users of these devices are safe and secure, the FDA’s guidelines directly discourage important notions of the maker and DIYPS movements, highlighting philosophical clashes centered on who owns and should have access to both the personal and software information possessed by the medical devices they have purchased. The FDA’s recommendations about data restriction and limiting access are fundamentally opposed by the philosophies of the DIYPS and maker movements, and they serve to illuminate some of the problematic ideals housed within the DIYPS movement. Whereas the FDA treats patients as consumers to be protected, standardized, and, to a certain extent, coddled, Lewis calls for a thorough, intimate understanding of the technology that will become part of the patient’s body. In the GitHub notes about software development for the artificial pancreas, publically available to any interested party, Lewis explains that, while much of the OpenAPS code and notation are freely available, “there are a few things . . . that are not included in this guide, and intentionally so in order to ensure that you have full intent and autonomy in building your system for yourself.”65 In

The Artificial Pancreas in Cyborg Bodies   425 Lewis’s ideology, type 1 diabetics are not merely patients but designers, engineers, people restoring their diminished agency. The desire within the DIYPS and maker movements to democratize technology design faces many of the same challenges we imagine all democratic movements face: unequal education, unequal resource distribution, and various social factors that serve to stymie all people from full participation. Without addressing these issues, DIY tech culture runs the risk of perpetuating the forms of marginalization inherent in the health care system it seeks to work against. Not everyone, after all, has the background or ability to understand and build an artificial pancreas system. Lewis’s desire for artificial pancreas users to have greater autonomy over their system is admirable, but access to such a device should not be restricted to those willing and able to take on that burden. The fault here is not Lewis’s alone; the medical device manufacturing establishment and the FDA have yet to provide a valid alternative that also fosters patient power. Yet, as long as these fundamental flaws within the DIYPS movement go unaddressed, artificial pancreas access will be restricted to those who feel welcome within DIY maker culture— predominantly white, well-educated, affluent, and technologically proficient diabetics. The benefits of DIY culture are therefore restricted to the group which is least likely to be underserved by the medical establishment, leaving many of those who could most benefit from artificial pancreas technology still out in the cold.

Conclusion In a non-diabetic body, a healthy pancreas autonomically regulates the production and secretion of insulin. As Ricotti et al. (2012) observe, “An automated closed-loop pancreas cannot approach the complexity of the native human endocrine pancreas, which continuously takes data from substrates, hormones, paracrine compounds, and autonomic neural inputs and secretes hormones in response.”66 In other words, no human— not even the most skilled bioengineers and technicians—can “think like a pancreas” yet. While closed-loop systems cannot think like a pancreas thinks, they appear to do a better job at calculating insulin requirements and making moment-to-moment adjustments than the average type 1 diabetic. Corporations are pushing along new frontiers in diabetes biotechnology: genetically engineered insulin, fast-acting insulin, advanced glucose monitoring technologies, continuous subcutaneous insulin infusion (CSII) systems (commonly referred to as insulin infusion pumps), and biomedical software algorithms that compute actionable biometric data. The next frontier of cyborg technology is to create a fully implantable artificial pancreas that can remain inside the body. This goal reflects a larger trend of cyborg conceptualization, whereas purer machine-human hybrids are considered to be technologies that are fully integrated with the internal physiology of the human, such that the skin remains the outermost border of the body. In general, Western medical ideology is adamant about maintaining the integrity of the skin as the outermost boundary of the

426   Anthony Ryan Hatch, Julia T. Gordon, and Sonya R. Sternlieb body. Perhaps success of these devices requires a cultural redefinition of how “normal” human bodies are defined. It seems that, similar to how there is culturally accepted image of the “ideal” human body, there is also an “ideal cyborg” image that informs the work of technicians, engineers, marketing/design teams—and most important, the lived experience of all users who have the potential to join with these devices. As Haraway’s cyborg invites us to ask: “why should our bodies end at the skin, or include at best other beings encapsulated by skin?”67 In 2020, mobile communication technologies and software applications like Glooko, glucose-insulin relational data are no longer proximate to the physical body and lived experience of a diabetic subject. Now, these data can be gazed from at a distance, analyzed, and manipulated by the diabetic subject’s care team from remote locations on computer screens. Clinicians, technicians, and biotechnology companies need only the diabetic’s body, an abstract field for insulin-glucose relations, in order to effectively manage diabetes. Biotech companies have developed proprietary software that targets these insulin–glucose relations with exceptional precision and statistical power. The biomedical and clinical discourses about human–pump relations for diabetics are increasingly and perhaps exclusively framed through a “quality of life” discourse that relies heavily on endpoint and outcome measurement. Clinical endpoints fall under the technician’s gaze, therefore partially displacing the patient’s gaze and agency. Diabetes treatment has become fixated on these numerical outcomes, which, in turn, are constructed as the ideal way to measure the quality of life of pumpers. With respect to practices like these, Haraway argues that the increasing interconnectivity of the world, aided by communication sciences and biomedical technology, allows for increased interfacing of all sorts of formerly distinct things, turns “the translation of the world into a problem of coding,” an issue to be resolved through technoscientific communication.68 As we move toward the next iteration of artificial pancreas technologies, it is important to take into consideration both the technical and psychosocial shifts that accompany these evolving conceptualizations of the body. Individuals may be reticent to relinquish responsibility of their care before trusting that their attached device is capable of managing their disease as well as they are. Importantly, the DIY maker movement shows us that one can have control and agency without taking on the burden of responsibility. Relinquishing responsibility while maintaining agency requires patients to develop a deep trust, familiarity, and integration with their machine such that they know how to troubleshoot technical problems and integrate previous embodied experiential knowledge of diabetes management into their new clinical/technical regime. Future artificial pancreas designs may consider incorporating a multiphase process by which patients can initially develop a trust through a physical engagement with their device. Subsequently, as they are ready to pass the onus of responsibility onto the device, the latter would be embedded within their bodies as something that truly feels integrated with their body. Understanding the distinction between agency, ownership, and responsibility will be crucial as the artificial pancreas continues to be technologically developed and more widely used.

The Artificial Pancreas in Cyborg Bodies   427

Notes 1. “FDA Approves First Automated Insulin Delivery Device for Type 1 Diabetes,” FDA. gov, last modified September 29, 2016, https://www.fda.gov/NewsEvents/Newsroom /PressAnnouncements/ucm522974.htm. 2. “FDA Approves First Automated Insulin Delivery Device for Type 1 Diabetes,” FDA. gov, last modified September 29, 2016, https://www.fda.gov/NewsEvents/Newsroom /PressAnnouncements/ucm522974.htm. 3. Leonardo Ricotti, Tareq Assaf, Paolo Dario, and Arianna Menciassi, “Wearable and Implantable Pancreas Substitutes,” Journal of Artificial Organs 16, no. 1 (2013): 9–22, 13. 4. We are speaking from experience here. Both Hatch and Gordon have lived with type 1 diabetes for 25 and 12 years, respectively. Hatch used MiniMed insulin pumps from 1995 to 2011 and now wears an Insulet Omnipod insulin pump. Gordon has worn MiniMed pumps since 2012 and now uses the 670G. They both wear continuous glucose sensors. 5. “Medtronic MiniMed 670G Insulin Pump System,” Medtronicdiabetes.com, accessed December 4, 2016, https://www.medtronicdiabetes.com/products/minimed-670g-insulin -pump-system. 6. “Medtronic MiniMed 670G Insulin Pump System,” Medtronicdiabetes.com, accessed June 11, 2017, https://www.medtronicdiabetes.com/products/minimed-670g-insulin-pump-system. 7. Lalantha Leelarathna, Sibylle Dellweg, Julia K. Mader, Janet M. Allen, Carsten Benesch, Werner Doll, Martin Ellmerer, et al., “Day and Night Home Closed-Loop Insulin Delivery in Adults with Type 1 Diabetes: Three-Center Randomized Crossover Study,” Diabetes Care 37, no. 7 (2014): 1931–1937; Revital Nimri, Ido Muller, Eran Atlas, Shahar Miller, Aviel Fogel, Natasa Bratina, Olga Kordonouri, Tadej Battelino, Thomas Danne, and Moshe Phillip, “MD-Logic Overnight Control for 6 Weeks of Home Use in Patients with Type 1 Diabetes: Randomized Crossover Trial,” Diabetes Care (2014): DC_140835; Amin Sharifi, Martin I. De Bock, Dilshani Jayawardene, Margaret M. Loh, Jodie C. Horsburgh, Carolyn L. Berthold, Nirubasini Paramalingam, et al., “Glycemia, Treatment Satisfaction, Cognition, and Sleep Quality in Adults and Adolescents with Type 1 Diabetes When Using a Closed-Loop System Overnight Versus Sensor-Augmented Pump with Low-Glucose Suspend Function: A Randomized Crossover Study,” Diabetes Technology & Therapeutics 18, no. 12 (2016): 772–783. 8. David Maahs, Bruce Buckingham, Jessica Castle, Ali Cinar, Edward Damiano, et al., “Outcome Measures for Artificial Pancreas Clinical Trials: A Consensus Report,” Diabetes Care 39, no. 7 (2016): 1175–1179. 9. “Medtronic MiniMed 670G Trial Results: 44% Reduction in Hypoglycemia, 0.5% A1c Improvement,” Diatribe.org, last modified June 28, 2016, https://diatribe.org /medtronic-minimed-670g-trial-results-44-reduction-hypoglycemia-05-a1c-improvement. 10. Alanna Weisman, Johnny-Wei Bai, Marina Cardinez, Caroline  K.  Kramer, and Bruce A. Perkins, “Effect of Artificial Pancreas Systems on Glycaemic Control in Patients with Type 1 Diabetes: A Systematic Review and Meta-analysis of Outpatient Randomised Controlled Trials,” The Lancet Diabetes & Endocrinology 5, no. 7 (2017): 501–512. 11. Katharine D. Barnard, Korey K. Hood, Jill Weissberg-Benchell, Chris Aldred, Nick Oliver, and Lori Laffel, “Psychosocial Assessment of Artificial Pancreas (AP): Commentary and Review of Existing Measures and Their Applicability in AP Research,” Diabetes Technology & Therapeutics 17, no. 4 (2015): 295–300.

428   Anthony Ryan Hatch, Julia T. Gordon, and Sonya R. Sternlieb 12. Sybil A. McAuley, Martin I. de Bock, Vijaya Sundararajan, Melissa H. Lee, Barbora Paldus, Geoff R. Ambler, Leon A. Bach, et al., “Effect of 6 Months of Hybrid Closed-Loop Insulin Delivery in Adults with Type 1 Diabetes: A Randomised Controlled Trial Protocol,” BMJ Open 8, no. 6 (2018): e020274. 13. Takayoshi Kiba, “Relationships between the Autonomic Nervous System and the Pancreas Including Regulation and Regeneration and Apoptosis: Recent Developments,” Pancreas 29, no. 2 (2004): e51–e58. 14. Dorothee Deiss, Peter Adolfsson, Marije Alkemade-van Zomeren, Geremia Bolli, et al. “Insulin Infusion Set Use: European Perspectives and Recommendations,” Diabetes Technology and Therapeutics 18, no. 9 (2016): 517–524. 15. Personal communication, MiniMed customer service representative, June 26, 2017. 16. Sarah Nettleton, “The Sociology of the Body,” in The New Blackwell Companion to Medical Sociology, edited by W. C. Cockerham (New York: Wiley-Blackwell, 2009), 62. 17. Michel Foucault, “The Birth of Social Medicine,” in The Essential Foucault, edited by Paul Rabinow and Nikolas Rose (New York: The New Press, [1974] 2003), 319. 18. Foucault, “The Birth of Social Medicine,” 320. 19. Troy Duster, “A Post-Genomic Surprise: The Molecular Reinscription of Race in Science, Law, and Medicine,” British Journal of Sociology 66, no. 1 (2015): 1–27. 20. Donna Haraway, “A Cyborg Manifesto: Science, Technology, and Socialist-Feminism in the Late Twentieth Century,” in The Cybercultures Reader, ed. David Bell and Barbara M. Kennedy (London: Routledge, 2000), 291–324, 292. 21. Haraway, “A Cyborg Manifesto.” 22. Woodrow Barfield and Alexander Williams, “Cyborgs and Enhancement Technology,” Philosophies 2, no. 4 (2017): 1–18. 23. Haraway, “A Cyborg Manifesto,” 293. 24. Nelly Oudshoorn, “Sustaining Cyborgs: Sensing and Tuning Agencies of Pacemakers and Implantable Cardioverter Defibrillators,” Social Studies of Science 45, no. 1 (2015): 56–76. 25. Oudshoorn, “Sustaining Cyborgs,” 57. 26. Lucie Dalibert, “Living with Spinal Cord Stimulation: Doing Embodiment and Incorporation,” Science, Technology & Human Values 41, no. 4 (2016): 635–659. 27. Dalibert, “Living with Spinal Cord,” 644. 28. Dalibert, “Living with Spinal Cord,” 646. 29. Ariane Quintal, Virginie Messier, Rémi Rabasa-Lhoret, and Eric Racine, “A Critical Review and Analysis of Ethical Issues Associated with the Artificial Pancreas,” Diabetes & Metabolism 45, no.1 (2018), 8. 30. Ibid. 31. Scot Yoder, “Personal Responsibility for Health.”Medical Humanities Report 19, no. 3 (1998). 32. Quintal et al., “A Critical Review,” 5. 33. Craig Blakeley and Jeff Matsura, “Who Owns Medical Device Data?,” Legal Solutions Blog, December 17, 2012. 34. Quintal et al., “A Critical Review,” 6. 35. Fatemah  M.  Alsaleh, Felicity  J.  Smith, S.  Keady, and K.  M.  G.  Taylor, “Insulin Pumps: From Inception to the Present and toward the Future,” Journal of Clinical Pharmacy and Therapeutics 35, no. 2 (2009): 127–138. 36. Eric J. Fogt, Lawrence M. Dodd, Ellen M. Jenning, and Anton H. Clemens, “Development and Evaluation of a Glucose Analyzer for a Glucose-Controlled Insulin Infusion System (Biostator),” Journal of Clinical Chemistry 24, no. 8 (1978): 1366–1372.

The Artificial Pancreas in Cyborg Bodies   429 37. Alsaleh et al., “Insulin Pumps,” 129. 38. David A. Gough and Jon C. Armour, “Development of the Implantable Glucose Sensor: What Are the Prospects and Why Is It Taking So Long?” Diabetes 44, no. 9 (1995): 1005–1009. 39. Eric Fogt, Lawrence Dodd, Ellen Jenning, and Anton Clemens, “Development and Evaluation of a Glucose Analyzer for a Glucose-Controlled Insulin Infusion System (BioStator),” Journal of Clinical Chemistry 24, no. 8 (1978): 1366. 40. Anton H. Clemens, D. L. Hough, and Paul A. D’Orazio, “Development of the BioStator Glucose Clamping Algorithm,” Journal of Clinical Chemistry 28, no. 9 (1982): 1899. 41. “Insulin Pumps Market to Reach US$9,550.7 Million by 2025; Prevalence of Diabetes and Favorable Government Policies Driving Demandm,” Prnewswire.com, last modified August 14, 2017, https://www.prnewswire.com/news-releases/insulin-pumps-market -to-reach-us95507-million-by-2025-prevalence-of-diabetes-and-favorable-government -policies-driving-demand-640288163.html. 42. Christopher Saudek, “Novel Forms of Insulin Delivery,” Endocrinology and Metabolism Clinics of North America, Current Therapies for Diabetes 26, no. 3 (1997): 599–610. 43. Bruce  W.  Bode, Hassan  T.  Sabbah, Todd  M.  Gross, Linda  P.  Fredrickson, and Paul C. Davidson, “Diabetes Management in the New Millennium Using Insulin Pump Therapy,” Diabetes/Metabolism Research and Reviews 18, Suppl. no. 1 (2002): S14–S20. 44. John Pickup and Harry Keen, “Continuous Subcutaneous Insulin Infusion at 25 Years,” Diabetes Care 25, no. 3 (2002): 593–598. 45. “T1D Exchange, JDRF and the Helmsley Charitable Trist Announce Joint Collaboration to Improve Health Outcomes and Access to Therapies and Technologies,” Myglu.org, last modified March 1, 2016, https://myglu.org/articles/t1d-exchange-jdrf-and-the-helmsley -charitable-trust-announce-joint-collaboration-to-improve-health-outcomes-and -access-to-therapies-and-technologies. 46. Steven M. Willi, Kellee M. Miller, Linda A. DiMEglio, Georgeanna J. Klingensmith, et al., “Racial-Ethnic Disparities in Management and Outcomes among Children with Type 1 Diabetes,” Pediatrics 135, no. 3 (2014): 1–11. 47. “African American Children with T1D Less Likely to Use Insulin Pump Than White Children, Study Says,” myglu.org, last modified September 29, 2014, https://myglu.org/articles /african-american-children-with-t1d-less-likely-to-use-insulin-pump-than-white-children -study-says. 48. Alison Kafer, Feminist, Queer, Crip (Bloomington: Indiana University Press, 2013). 49. Ruha Benjamin, A People’s Science: Bodies and Rights on the Stem Cell Frontier (Stanford, CA: Stanford University Press, 2013); Anne Pollock and Banu Subramanian, “Resisting Power, Retooling Justice: Promises of Feminist Postcolonial Technosciences,” Science, Technology, & Human Values 41, no. 6 (2016): 951–966; Anthony Ryan Hatch, “Transformations of Race in Science: Critical Race Theory, Scientific Racism, and the Logic of Colorblindness,” Issues in Race and Society 2, no. 1 (2014): 17–41; Moya Bailey and Whitney Peoples, “Towards a Black Feminist Health Science Studies,” Catalyst: Feminism, Theory, Technoscience 3, no. 2 (2016): 1–27. 50. “OpenAPS Outcomes,” OpenAPS.org, accessed June 5, 2017, https://openaps.org/outcomes/. 51. Dana Lewis and #OpenAPS Community, OpenAPS.org, accessed June 28, 2017, https:// openaps.org. 52. “More on the Maker Movement—How Can You Get Involved?” [video] 59:10, April 8, 2015, https://www.youtube.com/watch?v=1-REX8mBedA&t=9s.

430   Anthony Ryan Hatch, Julia T. Gordon, and Sonya R. Sternlieb 53. “Hacking Your Health: A Conversation with Dana Lewis,” interview by Mayo Clinic CFI, November 30, 2015, https://soundcloud.com/mayoinnovation/hacking-your-health -a-conversation-with-dana-lewis. 54. “The Maker Movement,” Maker Media Inc., March 7, 2016, https://help.makermedia.com /hc/en-us/articles/203729139-The-Maker-Movement. 55. Susan Currie Sivek, “ ‘We Need a Showing of All Hands’: Technological Utopianism in MAKE Magazine,” Journal of Communication Inquiry 35, no. 3 (2011): 187–209, 188. 56. Dana Lewis, “Early Fall 2015 #OpenAPS Update,” OpenAPS.org, September 18, 2015, https://openaps.org/early-fall-2015-openaps-update/. 57. Sivek, “We Need a Showing,” 191. 58. Aisling Ann O’Kane, “DIY Health and Wellbeing: The Hackers and Makers Outpacing Manufacturers and Researchers,” Frontiers in Public Health, Conference Abstract: 2nd Behaviour Change Conference: Digital Health and Wellbeing, January 9, 2016, https:// www.frontiersin.org/10.3389/conf.FPUBH.2016.01.00080/event_abstract. 59. O’Kane, “DIY Health and Wellbeing.” 60. Dan Hurley, “Diabetes Patients Are Hacking Their Way toward a Bionic Pancreas,” last modified December 24, 2014, http://www.wired.com/2014/12/diabetes-patients-hacking -together-diy-bionic-pancreases/. 61. Julie Christina Grew and Mette Nordahl Svendsen,” Wireless Heart Patients and the Quantified Self,” Body & Society 23, no. 1 (2017): 64–90, 84. 62. Grew and Svendsen, “Wireless Heart Patients,” 67. 63. Grew and Svendsen, “Wireless Heart Patients,” 84. 64. “Design Considerations and Pre-Market Submission Recommendations for Interoperable Medical Devices: Draft Guidance for Industry and Food and Drug Administration Staff,” FDA.gov, last modified January 26, 2016, https://www.fda.gov/ucm/groups/fdagov-public /@fdagov-meddev-gen/documents/document/ucm482649.pdf. 65. Dana Lewis, “OpenAPS Documentation,” March 29, 2016, https://github.com/openaps /docs/blob/master/README.md. 66. Ibid., 13. 67. Haraway, “A Cyborg Manifesto,” 314. 68. Haraway, “A Cyborg Manifesto,” 302.

chapter 25

Con testi ng Lym e Disease Sonny Nordmarken

According to current estimates, 300,000 people will become infected with Lyme disease this year in the United States (CDC 2017). This epidemic affects my department, where I’m aware of twelve people (including myself) who have had Lyme disease and one who has had another tick-borne illness. As guidelines recommend that doctors test for Lyme disease when a patient lives in or has traveled to an area considered “endemic” (Davis and Nichter 2016), one would expect that getting sick in Massachusetts would increase my chances of obtaining early diagnosis and treatment. It didn’t. In this chapter, I examine my experience with Lyme disease to analyze how medical knowledge about this disease and my body was produced via my interaction with the medical system, and to advance an alternative, embodied knowledge of Lyme disease. I argue that Lyme is what I call a contested disease marked by what I call contested care. My embodied knowledge, which I present as an analytical narrative, is part of a growing, counterhegemonic knowledge formation that we who are sick with Lyme disease are collectively constructing. This knowledge is a form of epistemic resistance against the dominant medical scientific narrative of Lyme. As I will illustrate, the conventional medical providers I visited—authorized as legitimate knowers and agents within the institutionalized medical system—followed conventional guidelines, constructing my embodied knowledge of Lyme disease as illegitimate, and constructing my Lyme infection as not Lyme. My experiential knowledge of chronic Lyme disease incorporates scientific knowledge, sensory body knowledge, and relational knowledge. I claim this knowledge to contest providers’ claims that I do not have Lyme disease. In this chapter, I explore the embodied knowledge of medical governmentality—the production of the body as an object of medical professional practice, where external social and political structures discursively produce, regulate, and govern bodies through actors’ routine everyday decision-making practices (Burchell et al. 1991; Jones and Porter 1994). I examine how, in failing to accurately diagnose and treat my sick body, credentialed health care providers reproduced culturally dominant, formally institutionalized, yet inadequate

432   Sonny Nordmarken formations of medical power-knowledge. Examining my embodied disease experience and interactions with medical actors, I produce and contribute to a dissenting formation of medical power-knowledge, performing citizen-science as what Davis and Nichter (2016) term an “activated health citizen.” Employing autoethnography, I analyze what happened to me, examining my symptoms, medical records, and interactions with medical providers. With these data, I chart how in medical examinations, providers produced my body as an object of medical professional practice, subsequently regulating me and depriving me of treatment. As a sick, transgender person subject to the operations of the medical institution in multiple ways, this autoethnographic research is resistance—a form of “study­ing up.” In the following pages, I discuss the social construction of Lyme disease, I discuss my methods, I tell my story, and I analyze what happened.

Social Constructions of Lyme Disease For Brown (1995, 37), the social construction of medical knowledge “deals with the ways of knowing that are based on the dominant biomedical framework” and is chiefly concerned with professional beliefs and diagnoses. Two conflicting biomedical frameworks have developed around Lyme disease, illustrating how it is a contested disease. Some writers refer to this dispute as the “Lyme Wars” (e.g., Davis and Nichter 2016; Specter 2013; Tonks 2007). Within the dominant biomedical framework, Lyme disease is constructed as an acute (sudden onset, short-term) infection caused by the spirochete bacterium Borrelia burgdorferi, which is transmitted through a tick bite, detectable via antibody tests and a bulls-eye-shaped rash, and treatable with a short course of antibiotics (CDC 2017). Within this dominant framework, a separate diagnostic category, termed “post-treatment Lyme disease syndrome” (PTLDS), has been constructed to label persistent illness, whose cause is allegedly unknown (CDC 2017). The CDC does not recommend treatment for PTLDS, warning against dangers of long-term antibiotic therapy (CDC 2017). From the perspective of an alternative biomedical framework, Lyme is constructed as a complex disease that, if left untreated or undertreated, can progress, disseminating into and damaging multiple organs and bodily systems and causing varied symptoms (Bean and Fein  2008; Blanc and Gebly  2007; Burrascano  2008; ILADS  2018; Savely  2010). According to this alternative framework, such diverse, fluctuating, persistent symptoms indicate an ongoing Lyme infection (Davis and Nichter 2016). Research studies based in and supporting the alternative framework have found that antibody tests are unreliable because Lyme disease bacteria are sophisticated and evasive, and no consistently effective, standardized approach to treatment has been determined (Bazovska et al. 2001; Blanc et al. 2007; Burrascano 2008; Cameron et al. 2014; Diterich et al. 2003; Hofmann 1996; ILADS 2018; Stanek et al. 1999; Steere 2008). Instead of a short course of antibiotics, doctors working within the alternative framework recommend a careful, collaborative, and individualized approach to patient-centered care (Burrascano 2008; Cameron et al. 2014).

Contesting Lyme Disease   433 These medical frameworks reflect different sets of implicit assumptions about how to think about pathology and medicine. The dominant biomedical framework’s diagnostic criteria, a classification schema concentrating on the appearance of the body and its biological markers, assume that Lyme disease’s expression is uniform and consistent. Constructing the diagnostic category of PTLDS as a phenomenon distinct from Lyme disease maintains this consistency and medical certainty by containing deviations that reflect medical uncertainty in a separate category. Most medical specialties have “syndromes”—diagnoses, descriptive categories, or analytical abstractions that stand for otherwise medically unexplainable symptoms (Mayou and Farmer 2002). Two examples are chronic fatigue syndrome and fibromyalgia syndrome. These syndromes were created to describe symptoms without an understood biological cause (Barsky and Borus  1999; Nimnuan et al.  2001). Constructing persistent signs of Lyme disease as symptoms of a “syndrome” and not “Lyme disease” is a strategic move that attempts to dissolve the concept of chronic Lyme disease infection by doing away with the label. Illnesses with unknown biological causes (syndromes) are defined sociologically as “contested illnesses.” Typically, patients with such conditions struggle to have medically unexplainable symptoms recognized in orthodox biomedical terms (Barker 2008, 2010; Conrad and Stults 2008; Dumit 2006). They often come into conflict with doctors who are reluctant to diagnose and treat illness without biological evidence. The diagnostic criteria for contested illnesses are descriptive, subjectively determined, and inexactly and inconsistently applied (Barker 2010). In the dominant framework, “Lyme disease” is characterized by medical certainty, as a biomedical cause has been identified; therefore, it does not qualify as a contested illness. From the perspective of this framework, “PTLDS,” socially constructed as having an unknown cause and thus characterized by medical uncertainty, is defined as a contested illness. From the perspective of the alternative biomedical framework, there is only one illness—Lyme disease—which can progress if untreated or undertreated, resulting in chronic Lyme disease infection. The alternative biomedical framework openly acknowledges medical uncertainty regarding Lyme disease. As I will demonstrate, chronic Lyme disease is not a contested illness, but a contested disease: a disease that, despite its known biomedical cause, doctors contest.

Autoethnography: Embodied Method Although “autoethnography” sounds like a combination of autobiography and eth­nog­ raphy, it is distinct from both. Unlike autobiography, autoethnography is a research method. Autoethnographers examine personal experiences to analyze culture and make scholarly contributions. Some scholars see autoethnography as a subgenre of eth­nog­ raphy (e.g., Anderson 2006), while others see it as a distinct method that is shaped by different ethical, epistemological, and methodological insights and perspectives (e.g., Holman Jones, Adams, and Ellis 2013).

434   Sonny Nordmarken From the perspective of conventional social science, autoethnography is limited, as it does not utilize the scientific method and, in writing about one’s own life, researcher bias is inevitable (Neuman 2007). The sample size is too small to produce generalizable findings. Autoethnographers do not necessarily begin by asking research questions. Their research may not explain phenomena. Analysis methods may not be systematic, involve coding or comparison, or produce theory. Some social scientists perceive that autoethnographers are merely writing about personal experience and selectively observing, coming to conclusions prematurely, and overgeneralizing (Neuman 2007). Some claim that autoethnography is not valuable or does not count as research at all if it does not provide “theoretical illumination of the topic under investigation” (Karp 1996, 14). Autoethnographers have a different perspective. Contesting science’s assumption of objectivity, they acknowledge and examine the ways their own perspectives shape their research and the knowledge they produce. These scholars view knowledge as partial, contingent, manifold, and constituted in and mediated by context and discourse. They do not aim to generalize, but to produce particular knowledge. Autoethnographic inquiry can be understood from a social science perspective as a kind of case study, conducted by “complete member researchers” (Adler and Adler 1987) who have a deep understanding of the context and greater access to certain kinds of data. Autoethnography utilizes a phenomenological approach, where the body is an experiencing agent and subject, and thus a source of knowledge about the world (Merleau-Ponty 1962). As the researchersubject can directly access his or her own body sensations and feelings as data, autoeth­ nog­raphy offers epistemic and methodological advantages when it comes to research on bodily experience, like illness. Instead of disregarding and erasing the bodies of researchers and participants—science’s tendency, which obstructs understandings of bodily experience (Conquergood  1991; Leder  1990)—autoethnographers offer vivid, visceral, and nuanced descriptions of them. They creatively use language and art to represent sensation and feeling experienced in relational interactions (e.g., Pelias 2016). Autoethnography enables scholars to articulate the details, complexities, and insights of stories, emotions, and bodily experiences (Ellis 1995). Scholars often use autoethnography to investigate phenomena that are difficult to discern through other methods. Autoethnographers engage understudied or sensitive ­topics (Philaretou and Allen 2006), like death (Ellis 1995; Vande Berg and Trujillo 2008), speech anxiety (Pelias  1997), eating disorders (Tillmann-Healy  1996), and childhood sexual abuse (Ronai 1995). They offer insider knowledge into the workings of cultural practices (Adams 2011; Tillman-Healy 1996) and processes of power. Autoethnographers examine social inequality by illustrating and analyzing their own life experiences with marginalization (e.g., Nordmarken 2014). They often use their research to explicitly work toward social change (Conquergood 1985), by clarifying the power that inheres in representations as they construct them and working to shift the power given via their status as  researchers. Scholars have also used autoethnographic approaches to build critical research that advances sociological theory (e.g., Crawley 2002; Lucal 1999; Nordmarken forthcoming; Shapiro 2007; Vidal-Ortiz 2004). For Anderson, “autoethnography offers distinctively grounded opportunities to pursue the connections between biography and

Contesting Lyme Disease   435 social structure that are central to C. Wright Mills’s conception of the sociological im­agin­ ation” (2006, 390). Thus, autoethnography is a useful method for research on many ­topics, such as embodiment, social interaction, culture, and power. Ethnographers conduct participant observation, relying primarily on their visual and auditory senses. Autoethnography enables researchers to use additional senses to gather data, including internal and external bodily sensations. In this chapter, I utilize my body as a research instrument and my experiences and embodied sensations as data to sociologically theorize the bodily and social aspects of Lyme disease. The empirical bases of my analyses are six data streams collected over the course of 3 years:

1. my felt bodily sensations of symptoms; 2. my daily records of symptoms’ initiation, longevity, and severity; 3. my medical records, including tests and clinical notes; 4. my ethnographic observations of my daily life and interactions with medical providers; 5. my conversations with other people with Lyme disease; and 6. medical science research literature. These varied data make autoethnography an appropriate and effective method to use to examine the phenomenon of chronic Lyme disease. I construct this piece in fractioned movements to disrupt the typical format of social science research papers, to accurately and artistically represent my feeling and thinking, and to bring you, reader, into my embodied experience. As a researcher-subject, my history and positionality shape the research, data, in­ter­pret­ ations, and knowledge I create. I am white, queer, transmasculine, and 38 years old. I am highly educated. I was raised with many socioeconomic privileges. As my illness persists and changes, my disablednesses and nondisablednesses also shift. At this time of this writing I have not regained my health completely, as I still deal with ongoing symptoms, but I am not as sick as I was 3 years ago. As I became sick after I had been transitioning gender for some time, I have only experienced chronic disease as a transmasculine person. I did not begin this research with a research question. Like Murphy (1987), I began by getting sick—entering the field and not being able to leave. I developed analyses through living repetitive experiences on a moment-to-moment, day-to-day basis over weeks, then months, and then years. This chapter has three central aims: to illustrate my experience with this disease and the barriers to care I encountered, to theorize the processes of power that obstructed my healing, and to legitimize the diagnostic category of chronic Lyme disease.

Being Sick January 22. Winter. First week of the semester. The second day of the class I teach. I feel like I am coming down with something. There is a familiar pulling feeling in the back of

436   Sonny Nordmarken my nose, throat. Sinuses. Scratchy. Irritated. I can feel the sick coming, and I know I can’t do anything about it. The next day, I wake up sick. Fever, weak, achy. Runny nose, phlegmy, dizzy. It is starting to snow. I drive myself to my school’s health clinic. I have to wait for a couple of hours. A doctor finally sees me. He says I have a virus, and to drink fluids. I drive home, through the snow. I am extremely thirsty. I drink water straight out of a pitcher. The moment I finish a gulp, my throat is dry and I need another. I prop myself up in bed with pillows, taking in large quantities of fluids. The next day I am still sick. And then the next. Monday. Tuesday. Wednesday. Days pass. Every day, I expect that tomorrow I will be better. I don’t get better, so I return to the health center. Although I don’t have a headache, a doctor diagnoses a sinus infection and prescribes an antibiotic. I finish the 10-day course but do not improve. I’m still weak and dizzy, and now I feel a bit brain-foggy. At the health center again, a different doctor does some tests and prescribes two drugs to diminish my symptoms. I suspect I have an infection that my immune system is fighting, so I don’t take the steroid he prescribed. When I tell him at the next appointment that I didn’t take the steroid because I was afraid, he says he will not see me again unless I take it. So, I take the steroid. I then experience excruciating abdominal pain and headache, greater dizziness and fatigue, and intense anxiety and depression. Weeks pass. Every day, I still expect that tomorrow I will be better. Instead, I get worse. My many new bodily sensations teach me some of the ways bodies know illness. Lying in bed, turning my head is exhausting. I have to rest completely, sinking my head into the pillow. This body sensation is beyond weakness or fatigue. Before I became sick, I experienced fatigue as exhaustion. After a rigorous workout, my muscles were fatigued; after a long day, I was tired. Now, I lack the strength to exercise. Now, I have less than what I used to experience as zero energy. I am exhausted from no exertion. Exhaustion is my baseline. Exhaustion is my most energetic. I experience various kinds of dizziness. First, I feel like I’m constantly on a boat. It feels like the ground I’m walking on and the chair I’m sitting in are moving. I walk into doorframes and walls. I stumble. I have to hold onto the wall and concentrate on bal­an­ cing myself in order to not fall down. When I lie down I feel like the boat is rocking. I mean the bed. (I misspeak.) Lying down, I feel like I am hanging upside down by my feet. Turning my head to the left and right to see if cars are coming when driving, I feel like I’m spinning. I get really dizzy in the grocery store. I get seasick when I read. Throughout my days, I forget what I’m doing in the midst of doing it, what I’m looking for in the midst of looking for it. It takes time and effort to process input. I have trouble understanding what I read. I go over sentences over and over, the words passing through my head. I have trouble tracking conversations. Sometimes I can’t both receive a sentence and process it at the same time, but people seem to expect that I can do that. There is a moment between receiving words strung together and understanding them. I can’t grab onto each word before the next slew of words comes. It’s as if my brain cannot hold all of

Contesting Lyme Disease   437 the words at once and process them all at once too. I strain to remember the first part of the sentence at the same time as retaining the last few words, but I’m not fast enough and many of the words evaporate. I get some of the words but not all. It also takes time and effort to talk. Sometimes, when speaking, I can’t think of how to say what I’m trying to say. I realize I want to communicate something, and then I have to concentrate so I can conjure the words and string them together in speech. It is a task to think of appropriate words in the moment I am forming sentences. Sometimes I say words that don’t make sense. Sometimes I misspeak. Sometimes my grammar is not right. Sometimes it is embarrassing. Sometimes Ihave to ask people to repeat themselves or to speak more slowly. Sometimes I repeat the same story because I don’t remember if I’ve already shared it. Sometimes, by the time the person I’m talking with has finished a sentence, I can’t remember what I wanted to say. As my symptoms intensify, my awareness and understanding of my sickness deepen. This is an embodied knowledge that can only develop through interpreting one’s own bodily experience. It cannot be gleaned from reading or studying; it is a sensory know­ ledge. In writing my experience, I am aware that readers might interpret my cognitive impairment as making me intellectually inferior and incapable of rigorous academic engagement. This perspective is a form of ableism. Though they impair me, my cognitive symptoms advantage me epistemically. My bodily experiences of this illness contribute to my embodied knowledge; they help me better know and understand what cognitive impairment, fatigue, and dizziness are. I return, again and again to the health center, seeing new doctors, hoping for different opinions. I keep thinking they will help me because in the past, when doctors have prescribed me medicine, I have gotten better. But this time, I don’t. The providers seem to be trying to help. They do more tests. All results are “normal.” They say I don’t look sick. The doctors write in my chart: Thin, not particularly ill-appearing. Well-appearing. Appears tired but no acute distress. Well developed, well nourished, in no acute distress. Appears mildly fatigued. Alert, oriented, normal appearance. Neuro: grossly intact. Psych: alert, appropriate mood and affect, oriented to person, place, time, grossly intact memory, grossly normal judgment. He complains of cognitive problems, but he tested well.

I am anxious. At this point, I have been sick a long time and doctors haven’t helped me, and, based on what they say to me, I am not sure they believe that I am sick at all. Although they try not to show it, it is clear that they are just as uncertain as I am about what I have and how to treat it. It appears that it is up to me to do the work of trying to diagnose and heal myself, because although the providers have tried, they have been unsuccessful. My orientation toward my medical care begins to shift. I stop playing the “sick role” (Parsons 1951) of delegating responsibility for my health care to doctors and

438   Sonny Nordmarken cooperating with them, and I start advocating for myself and learning how to be my own doctor. I stop engaging in patient compliance and I begin to seek what Barker (2008) calls “physician compliance”—the expectation that physicians will accept patient ex­pert­ise. I demand more tests. Like many others have done (Fox and Fallows 2003), I search online, trying to figure out what I have. I read about mono, chronic fatigue syndrome, and Lyme disease. I find information on medical websites and blogs written by people with chronic Lyme disease about their experiences. They describe their symptoms, share their stories and knowledge of the disease, and offer treatment suggestions. I am still unsure what illness I have, but reading these blogs, I begin to suspect I have Lyme disease. I recognize my felt sensations in their descriptions of theirs; I recognize my body in their bodies. I also relate to their encounters with doctors. I read that fewer than 50 percent of Lyme disease sufferers recall a tick bite and fewer than 50 percent recall a rash (ILADS 2018). I did not find a tick or a rash. I read that it is important to treat Lyme disease as soon as possible; the later the treatment, the more difficult the recovery (Burrascano  2008). I read that antibiotic treatment is indicated (CDC  2017). I read that the conventional diagnostic tests are notoriously inaccurate (Bazovska et al. 2001; Blanc et al. 2007; Burrascano 2008; Hofmann 1996; Steere 2008; Stanek et al. 1999). I read that it is difficult to get a positive test within the first few weeks of infection (Hofmann 1996). I also read that, if left untreated, Lyme disease can progress, spread to the joints, heart, and nervous system (CDC 2017), damage many bodily systems, and create chronic conditions, such as extreme fatigue, neurological and im­muno­logic­al impairment, and autoimmune conditions (Burrascano 2008). I learn that conventional testing is a two-step process. First, an “enzyme im­muno­ assay” (ELISA) test is performed, and if that test returns a positive or indeterminate result, next, an “immunoblot” (Western blot) test is done to confirm or deny the ELISA result (CDC  2017). I read that it is important to get a Western blot test because the ELISA misses many infections (Burrascano 2008; Stanek et al. 1999). The doctors did not do a Western blot test for me, because my ELISA was negative. The doctors said I don’t have Lyme. But what if I do have Lyme? How can I get a Western blot test if my ELISA was negative? I feel helpless. I’ve been sick for a long time. I am dependent on this institution (or at least the cooperation of its workers) to draw my blood and perform and analyze the test. I can’t do these things myself. What can I do? Like those with fibromyalgia (Barker 2008), I distrust this system that I must rely on. I ask a doctor at the clinic if a false-negative Lyme test result is possible. She says, “No, it is not possible. It is possible to get a false positive but not a false negative.” Later, I understand that she is probably referring to how, regardless of the pathogen tested for, ELISA tests generally return high numbers of false positives (Bazovska et al. 2001). The doctor tells me, “You are not exactly the poster child for Lyme disease,” because I don’t have evidence of a tick bite, bulls-eye rash, or joint pain, and I got sick in the winter. She says, “People with tick-borne illnesses are really sick.” I am confused and frustrated. Why does she not understand how sick I am? How does she not know that symptoms vary among those infected with Lyme disease (Bean and Fein  2008; Blanc and Gebly  2007;

Contesting Lyme Disease   439 Burrascano 2008; ILADS 2018; Savely 2010) and that people can become infected yet not develop symptoms for a long time (Specter 2013)? This doctor seems preoccupied with the same symptoms that scientists tend to focus on: a bulls-eye rash, arthritis, pain, and numbness (Steere 2008). Like many other Lyme disease patients, I am most concerned about my fatigue and cognitive impairment (Johnson et al. 2014). It looks like I can’t ask for another test because she has suggested that it would make no sense. So, I don’t. This is how I come to know the contestation of Lyme disease firsthand, in my own search for medical care. Scholars have observed that diagnosis launches a particular illness career, contributes to the creation of an illness identity, and makes possible af­fi li­ ation with an illness community (Hacking 1999). However, my illness career launches when I begin to identify with the common experience among people with Lyme disease of fighting with doctors. Eventually, my doctor refers me to specialists. I go to an otolaryngologist (an ear, nose, and throat doctor), who finds nothing wrong, and a neurologist, who guesses I have a migraine and prescribes me migraine medicine. I do an MRI, which shows no problems. My sickness persists. Fatigue, cognitive impairment, dizziness. Every day, I still think, tomorrow I will be better. But I get more and more anxious. I seek out other doctors: an eye doctor, an infectious disease specialist, an osteopathic doctor, an endocrinologist, a chiropractor, a naturopath, a transgender health specialist, a Lyme disease specialist. They do an EKG; they check my hormones and nutrients; they test me for Epstein Barr, HIV, parvovirus, coccidioidomycosis, and various other diseases. No positive results. These providers tell me, “You don’t have Lyme.” According to the “decision rule” (Freidson 1971) or the “diagnostic imperative” (Barker 2010), phys­ icians tend to diagnose patients, which is why the first doctors I saw told me that I had a virus and then a sinus infection. Although they do not have verified evidence, these other doctors also diagnose me with a variety of conditions: mononucleosis, a thyroid condition, a postviral syndrome, chronic fatigue syndrome, and depression. They prescribe me thyroid medicine, antidepressants, homeopathics, and various supplements. Reading that some people with Lyme disease were first diagnosed with other conditions (Davis and Nichter 2016), I wonder if this is happening to me. More weeks pass. Still sick. I ask my doctor what I should do. She tells me to resume my life and go to work like usual. So, I try, but it is difficult to manage. I run into a professor, who says she hasn’t seen me in a while and asks how I am feeling. I’m still sick, I say. Really dizzy and tired, I say. That sounds like Lyme disease, she says. I feel crazy. I tell her, I thought I had Lyme disease and they tested me, and I don’t have it. She says, you might have it. Another professor, who has Lyme disease, tells me my symptoms sound like Lyme disease. She tells me to get the Western blot test. I am frustrated. I don’t understand why so many people besides the doctors I’m seeing seem to know that these tests are inaccurate, and that I need a Western blot test. I begin to see doctors in a new way: as obstacles and gatekeepers. I go back to the clinic and demand a Western blot test. The doctor reluctantly does the test. Though it shows one “reactive” band, she interprets the results as negative. It is clear to

440   Sonny Nordmarken me that, as doctors repeatedly refuse to diagnose me with it, Lyme disease is an illness “you have to fight to get” (Dumit 2006, 577). I feel a kinship with those who struggle with getting contested illnesses diagnosed and treated, due to doctors’ reluctance (Asbring and Narvanen 2003; Barker 2010; Crofford and Clauw 2002). Although it is not my nature, these experiences teach me to distrust and take an adversarial stance toward doctors. Months pass. No improvement. Every day, I still hope that the next day I will be better. Meanwhile, I develop new symptoms. My weight drops to 95 pounds. My muscles twitch. I feel bugs crawling all over me, when there are none. I lie in bed and cannot fall asleep at night, and every night I wake up at 2:00 a.m. and often cannot get back to sleep. My fingers hurt and are stiff. My legs ache. I have air hunger, where I gulp for air and yawn all the time, but still can’t seem to get enough oxygen. Sometimes I feel a sharp pain in my ear. Sometimes I taste something sweet when I haven’t eaten anything. Sometimes I have numbness. Sometimes the muscles on one side of my mouth freeze up. Sometimes I have stomach pain. Sometimes I have a pain in my left arm. My phlegm persists. And my fatigue, dizziness, and cognitive symptoms worsen. I work even though I can’t do very much. I don’t have the strength to walk up the hill from the lot where I am supposed to park, so I pay to park in the garage because that is the closest parking to my building. It is expensive, but there is no alternative. I can’t walk very far. I can’t stand up very long. I have to sit to teach. One time I try to write on the chalkboard, but I cannot hold my arm up for more than a couple moments. Talking is exhausting. Listening is exhausting. I hold office hours and meetings via Skype from my bed. I grade in bed. I read in bed. I write in bed. I eat in bed. I don’t wear a tie to work because lifting my arms to tie it is too strenuous. My midsection feels like it has lost its muscles. It is exhausting to sit up. Keeping my arms up to hold onto the steering wheel is exhausting. Lifting my arms up to wash my hair is exhausting. I shower once a week because I don’t have energy for more showers. In the shower, I can’t remember—did I wash my hair yet? Did I wash my legs? One day, searching for information on the Internet, I find out about Igenex, a specialty lab that does a more sensitive Western blot test, which is reportedly more accurate than conventional tests. Igenex does not take health insurance. I request an Igenex test kit, which comes in the mail. The challenge now is to find a doctor who will order this test. I post on Facebook that I have been sick for over 4 months, and I describe my symptoms. My friend who has Lyme disease writes, “You have Lyme disease.” They tell me to go to their doctor, a Lyme disease specialist in a nearby state. I come prepared with an Igenex test kit to the first appointment. I don’t need it because she diagnoses me with Lyme disease based on my symptoms and the one reactive band on my conventional Western blot test. This doctor acts as my ally, partnering with me in treating my disease. I pursue various treatments, including antibiotics, which she prescribes, and many other, alternative and experimental treatments, some that she offers, and some that I learn about and

Contesting Lyme Disease   441 access elsewhere. I spend exorbitant amounts of money on care not covered by insurance. I eventually stop expecting I will be better tomorrow. Ever so slowly, over months and years, many of my symptoms begin to diminish. I don’t know which treatment is helping, since I have tried so many. But I am grateful. After being sick for almost 2 years and being treated for Lyme disease for a year and a half, although my health has dramatically improved, I am still not “better.” My most debilitating symptom, fatigue, has diminished considerably, but my cognitive impairment persists, dizziness comes and goes, and new symptoms have arisen. I have di­gest­ ive problems. I frequently come down with what I think are flus and colds. I am not sure why I have new symptoms. I know that Lyme bacteria can evade the immune system (Burrascano 2008; Cameron et al. 2014; Diterich et al. 2003) and antibiotics (Brorson et al. 2009; Georgilis et al. 1992; MacDonald 1988), and they can impair immunological function (Burrascano 2008). Are my symptoms new Lyme symptoms, secondary infections due to lowered immune function, or symptoms of another disease? Part of me wants evidence of an active infection: a positive test result. A different part of me wants to trust my own and the collective embodied knowledge of the Lyme comrades I have learned from over the knowledge of medical science. I also understand that as the tests are imperfect, there is no way of ruling Lyme out or in. I finally decide to do an Igenex test—the expensive test at the specialty lab. It is positive.

Contesting the Medical Governance of Lyme Disease My data (symptoms, medical records, and interactions with providers and other people with Lyme disease) contribute key information to the debate over whether persistent symptoms point to an active infection, called “chronic Lyme disease,” or something uncertain, called “post-treatment Lyme disease syndrome.” The test processed by the specialty lab after I’d been sick for 2 years indicated that I had an active infection. According to the dominant biomedical construction of Lyme disease, this result is impossible. However, considering this test result in light of the rest of my data, it is clear that what I had and still have is an acute infection that progressed because I was not treated at the outset. I first had undiagnosed and untreated Lyme disease, which became chronic Lyme disease by the time I accessed treatment. My illness was never labeled PTLDS because the doctors who would have used that label never treated me for Lyme, and I stopped working with them once I found a doctor who did. My data demonstrate that doctors who failed to diagnose me did so because they adhered to the dominant biomedical framework, relying on a narrow set of biological markers and inadequate

442   Sonny Nordmarken tests. This kind of evidence, which is common with Lyme disease, epistemologically ruptures the dominant biomedical construction. Although my experience is common among people with Lyme, rather than reformulating the definition of Lyme disease to include persistent infection, medical knowledgeconstructors maintain a separate category—a syndrome, not an infection. This second category and the refusal to re-examine the first category shape how Lyme disease is governed. From a Foucaultian perspective, power is a relationship that is localized, diffused, and disguised through the social system, operating covertly through sets of specific practices (Turner 1997). This power is embodied in the day-to-day practices of the medical profession, through medical actors’ mundane decision making (Turner 1997). Diagnosis decisions are one operation of medical governance. Medical actors ascribe disease cat­ egor­ies to patients based on their assumption that diseases are reliably detectable and appear identically across individuals. My experience illustrates how the manufacture and ascription of disease categories regulate patients’ bodies—through the practices of mis­label­ing and not labeling disease. Some doctors misclassified my disease while others claimed that I was not sick and refused to diagnose me. In so doing, doctors wittingly or unwittingly evaded their responsibility to deal with the problem by making it look like they already had. In the context of our medical system, where accurate diagnosis is required to obtain effective treatment, misdiagnosing and not diagnosing me had dis­cip­lin­ary effects— both prevented me from accessing appropriate treatment. Thus, my Lyme disease was governed by medical authority figures’ disciplinary practices of denial and misdiagnosis. After enough of this unhelpful expertise and with others’ encouragement, I questioned their conclusions. Since a biological cause of Lyme disease has been identified, it is not a contested illness; it is a contested disease. However, many of us with chronic Lyme disease have “contested illness experiences” because we come into conflict with providers who don’t believe us and deny us treatment. I call these “contested care” ex­peri­ences—where medical care encompasses both diagnosis and treatment. This conceptualization points to how, in the case of the contested disease of Lyme disease, the approach to medical care is contested. “Contested care,” then, refers to conflict over the governance of medical care among providers and patients. I see contested care as a “social symptom” of Lyme disease, and I suspect that many people who endure repetitive conflict of this nature do in fact have Lyme. This social symptom is a key feature of the larger institutionalization and governance of Lyme disease, which maintains a system of unequal access to and deprivation of care. The built environment, which includes medical categories and treatments, is designed to serve the needs of those whose illness manifestations fit within the dominant biomedical framework, excluding from medical care those whose illness manifestations do not fit. Medicalization has been critiqued as a process that sublimates disabled bodies by suggesting they are inferior and need a cure (e.g., Clare 2017). However, some disabled bodies need medical technology (Wendell  2001) and appropriate medicalization. People with Lyme disease whose care is contested are especially in need of adequate medicalization in order to access diagnosis and treatment, which they so often are barred from. In

Contesting Lyme Disease   443 this context, fighting for correct classification is an attempt at survival and an act of resistance. This chapter has exposed the behind-the-scenes battles of the Lyme Wars as they have manifested in and about my body. I have illustrated how I acquired an embodied know­ ledge of Lyme disease and its medical governance, I have theorized contested disease and contested care, and I have provided evidence for the fact that chronic Lyme disease exists. This research has implications for policy. It is imperative that the CDC (1) institute a more inclusive definition of Lyme disease, (2) alert practitioners to look for chronic Lyme disease rather than disclaiming its existence, and (3) expand the range of recommended possible treatments. Additionally, further research on both the bio­med­ ical and clinical aspects of Lyme disease is acutely needed. We are in dire need of studies that expand our understanding of the Lyme bacteria’s defense mechanisms and studies that lead to the creation of more effective treatments. We also need research that examines the practices of providers who work within Lyme disease’s dominant and alternative biomedical frameworks, comparing the medical governance logics and effectiveness of each. Further investigation of experiences of contested care and related mechanisms of social inequality are vitally needed—in particular, studies examining the roles that race, class, and gender play in the social and health care experiences of people with Lyme disease. Also important is further inquiry into the embodied experiences of illness more generally. Finally, we need more research on illness integrating medical science, social science theory and methods, and creative writing.

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chapter 26

“L ay i ng H a n ds” a n d Lea r n i ng to Touch a n d Gr a b i n th e Police Aca dem y Brian Lande

5/25/08: I am driving my patrol car southbound on a narrow, two-lane highway in a small town, in the county I patrol. The town has only 2,000 inhabitants and no services except a grocery store, a bar, and a gas station. At about 3 a.m., I see a man riding his bike down the highway. Hanging from the bike is a white grocery bag containing a red gas canister and a rubber piece of tubing. I immediately recall that there has been a rash of gas theft from residents’ cars over the past few nights. I also notice that the bike rider has no lights on the bike, a vehicle code violation. I drive by him, and then turn around and stop him, activating my ambers and my spotlight. He gets off his bike and starts walking over to me. I get out of the car, still on my radio with Dispatch calling out the stop. I tell the guy, “Hey, go stand by my car . . . ” As an afterthought, I say, “I don’t want you to get whacked by a car, safer in front of my car.” Something didn’t feel right and I want distance between myself and the bike rider. The guy doesn’t look like our typical local. He is white, has red hair, a beard, about 5’10,” 190 lb. He looks kind of like a hipster, wearing a blue Dickies jacket and nice black construction jeans. His speech is refined. This is not the kind of guy I have encountered, night after night, in this poor, rural, geographically isolated town. Yet he has a gas canister and siphon hose in his plastic grocery bag. He also keeps reaching into his blue jacket.

448   Brian Lande I say to him, “Hey, you mind keeping your hands out of your pocket?” He says, “Sure. Whatever you like.” I start talking to him: bl:  “What’s the gas can for?” Guy:  “My car broke down and I was trying to get to a gas station for gas. All I got is $5.” bl:  “Ok. So what kind of car do you have?” Guy:  “Toyota Camry.” bl:  “What year?” [He pauses to think.] Guy:  “1989.” bl:  “So where was the bike?” Guy:  “I had it strapped into the trunk.”

[Reaches into pockets again, like he is checking to see if something is still there. This gets my attention since I had already clearly told him not to.] bl:  Hey. I told you not to put your hands in your pockets. You mind if I search you for weapons? Guy:  Ok. bl:  You have any weapons on you? Guy:  No. bl:  Ok, turn around, put your hands on your head, and interlock your fingers.

I grab onto the man’s hands, firmly gripping several of his fingers, effectively locking his hands together. I start patting him down. I briskly feel around his waist band. Nothing. I run my hand up and down his shirt, and all I feel is flesh. I move to the jacket. I pat, feeling for anything hard and then I make a grabbing motion with my hands, making sure I don’t miss anything. I get to the outer pockets. I pat and feel something hard in the right. From the pat alone I can’t tell what it is. I know it isn’t good. I grab the man’s hands more firmly, pull him back, widen my legs and bend my knees slightly to get a better center of balance. I then sweep his right leg out to leave him off balance. I make a grabbing motion that bunches the cloth together and reveals something hard, heavy, and metallic, about the size of my hand. My heart rate climbs, and I know that it is a weapon. I plan on pulling it out but first I ask, “What’s in your pocket?” in order to gauge any changes in the man’s reaction. He says, “Uh, brass knuckles.” I pull the brass knuckles out and set them on the hood of my car. Still holding his hands with my left hand, I take out a pair of cuffs and snap them on his wrists. I tell him to sit on the push bars of my patrol car. I ask him, “You planning on using those things on me?” He says, “No, no, they aren’t mine. I just found them outside on the side of the street by that bar . . .” This moment from the field captures the corporeal and sensuous nature of police work. As the encounter unfolds, the suspect and I come into closer and more proximal tactile

“Laying Hands” in the Police Academy   449 contact with one another, but this intimate contact is not unstructured or random. It hinges on a unity of sensory potentials unique to policing. The body of a police officer is  “always already there” in the face-to-face interactions of police work (Katz  2001; Merleau-Ponty 1962) but with a set of perceptual and actional habits and skills that orient police officers toward others in an occupationally specific way (Bourdieu  1984). Within these interactions, police bodies begin to function even before an officer can interpret, at a symbolic level, the situation at hand.

Introduction: Embodying “Search and Seizure” In this chapter I take an embodied approach (Bourdieu  1990; Merleau-Ponty  1962; Thompson 2010) to what the law calls “search and seizure” by police. Search and seizure is a set of legal prescriptions, statutes, and policies enforced by police departments and courts and practiced by police officers in everyday life, in which officers restrain civilians’ freedom of movement and search their bodies and clothing for weapons. To speak of an embodied approach is to say that I focus on the body as a locus of action rather than to treat it as something passive only to be read as a source of symbolic expression. Above all, search and seizure, what police officers colloquially refer to as “laying hands,” is a set of socially patterned bodily acts and perceptual competencies, learned in face-toface and body-to-body interaction with police academy instructors, peers, and senior officers; it constitutes a core competence of police work (Rubenstein  1973). These embodied acts are also accountable (Heritage 1984; Weider 1974) in that recruits and officers are held accountable for their performances of search and seizure by courts (Fyfe 1981; Waegel 1984), by citizens and suspects (Rojek, Alpert, and Smith 2012), and by other police officers (Barker 1999; Henry 2004; Hunt 1985; Manning 1997; Rubenstein 1973). I argue that accounting for the occupation-specific perceptual and motoric ­competence of policing requires looking at how police bodies are disciplined and trained as well as how specific ways of moving and exploring the social environment, via the vehicle of the body, are correlative of how people, things, space, and relationships are disclosed in the experience of search and seizure. I use ethnography to describe and explain how an officer’s perceptual and motor behaviors are socially patterned into search and seizure—which includes learning techniques of movement and concomitant sensitization and fine discrimination of tactile perception— and how neophyte police recruits learn to competently account for their embodied perceptual activity. I analyze both the settings of body-to-body interaction in which recruits learn how to “lay hands” and the social milieu in which police recruits learn to competently account for their use of the hands and to see how they are potentially accountable to

450   Brian Lande others. In other words, I ethnographically describe the explicit world of talk, accounts, the thousand islands of reprimands, praises, and injunctions to which soon-to-be officers learn what is expected of them as well as the tacit dimension, typically ignored by the policing literature, of how recruits learn to “feel” and “manipulate” in ways that lay bare the objects of searches (e.g., baggies of “dope” or weapons). The difficulty of being a new police officer is that being a competent police officer requires being able to see and “feel” the world in terms of qualities like how grabbable another person is. And to see things as grabbable or touchable, a new officer must know how to grab and touch. This means acquiring a tacit knowledge of how and when to enact search and seizure; a habitus or matrix of appropriate perceptual or forceful bodily techniques (Mauss 1979) which, I will argue, an officer must possess in order to experience a world full of things that are searchable and seizable in a properly “police-like” way. Becoming competent as a new police officer requires an attunement to the social logic of bodily co-presence between officer and suspect, especially the way the police officer learns how to use his or her body to control and sense the bodies of other people. In other words, to be a cop, and “grasp” the occupational world of policing, is to touch like a cop. I will argue that being able to touch like a cop means incorporating a set of bodily techniques (Mauss 1979), or socially acquired, technical, and socially efficacious movements into the habitual body, what Bourdieu refers to as habitus. This chapter makes the following arguments: (1) The bodily movements and forms of policing are not just correlated to individual traits of police but are similar patterns of movements, by which the bodies of recruits become increasingly homogenized through collective conditioning experiences in the academy. In this sense, police do not have a “shared” culture of searching; rather, individuals acquire a network of competencies to  enact searches and seizures based on their unique and individuated experiences of  training in a well-structured training milieu with plentiful and timely feedback (Bourdieu 2000; Merleau-Ponty 1962; Thompson 2010). These structures are, on the one hand, symbolic—as when a recruit is held to account for a breakdown in bodily conduct—and, on the other hand, they are corporeal, learned in and through the recruits’ structured participation with other performers of “laying hands.” (2) Search and seizure is a multimodal and embodied competency, involving training the tactile sensibilities alongside sensitizing one’s visual acuity and olfactory sensitivity. (3) How people and situations “show up” for police officers is a consequence of the kinds of actional gestalts they acquire (skills for exploring clothes with hands and for grabbing, pushing, manipulating, punching, etc.). In other words, action and perception are linked such that police have deeply visceral responses to how they categorize people, in part because they categorize people in terms of the kinds of actions those persons, in given situations, afford. Search and seizure is high stakes. Not only is it a matter of regular “Fourth Amendment” litigation, as we have seen in the federal court rejections of New York City’s “Stop and Frisk” policies (Floyd v. City of New York 2013), it is also the point where officer and community members come into physical contact with one another, and the moment when all involved are most vulnerable, and potential violent conflict is most likely to occur. Given the personal, political, and social stakes in what happens when police “lay hands,”

“Laying Hands” in the Police Academy   451 it is worth considering how search and seizure is actually implemented so we can move on to discussions of whether those practices are enacted under fair and unbiased conditions.

Methodology This chapter draws on my observations from police academies in two large Northern California counties between February 2006 and August 2007: some from my own six months of experience as a recruit in the South Bay Police Academy1 (SBPA, the academy I graduated from), plus an additional three months of observation at the North Bay Police Academy. SBPA was operated by a regional consortium to deliver basic police academy training at a number of community colleges. The SBPA campus was separate from the community college that administered the training and was located at a military base. The NBPA was administered directly by a large county sheriff ’s office on a property owned by the sheriff ’s office. Both academies were paramilitary in organization, emphasizing physical fitness but varying in the degree of stress and discipline enacted by the respective cadre toward the recruits. Between SBPA and NBPA, I observed two classes, with thirty-eight and fifty recruits in the respective academy classes, six training cadre (four in the former and two in the latter), and a large number of visiting instructors. Much to my surprise, I found little difference between the practices, talk, and organization of daily life at either academy. As a result, I will not focus on the differences between the academies, since they had little bearing on “search and seizure.” The administration, training cadre, and recruits all knew I was a graduate student and that I was writing about policing. I began work as a police officer and then as a deputy sheriff, and continued taking notes from April 2007 through June 2010 and, like at the academy, my colleagues all knew that I was a sociologist and that I was writing about my observations about life on patrol. I supplement experiential data and observations with interviews and an analysis of police academy learning materials. In total, I spent approximately 1,500 hours in the field making observations on police academies. During my fieldwork, I documented my observations of recruits, instructors, and recruit training officers (RTOs or “cadre,” the drill instructors of the police academy), as well as my own physical and emotional experiences. I have gathered over 500 pages of field notes, nearly a thousand photographs, hours of video, and many audiotaped interviews. Together, these compiled data have helped me to question fundamental assumptions about studying police culture and police violence. What follows is, to use Wacquant’s (2003) terminology, a “carnal ethnography”—a study not only of the body but from the body. I use my own embodied encounters in the police academy as one tool, among others, to reveal the moral, mental, and physical dimensions of becoming a cop. Gender, race, class, athleticism, and more all influence recruits’ bodily experiences of training; for the purposes of this chapter, however, I focus

452   Brian Lande on the generic transformations that all recruits must undergo to become probationary police officers who produce practices recognizable as “search and seizure.”

Overview of Search and Seizure Generally, police officers are taught that there is a seizure whenever a police officer stops an individual and restrains that person’s freedom to walk away, and a Terry “search” occurs when an officer makes a careful exploration of the outer surfaces of a person’s clothing to attempt to find weapons. These searches and seizures are routine parts of a police officer’s day. Police practices of search and seizure are governed by constitutional law (including both the Fourth Amendment and subsequent case law) and further limited by state law and departmental policies. The Fourth Amendment aims to protect citizens from “unreasonable searches and seizures,” but it does not say how to do searches, why, or when. Local policies restrict when searches or seizures may occur. The Fourth Amendment and other case law (e.g., Terry v. Ohio, 392 US 1[1968]2; US v. Neff, 300 F.3d 1217 [10th Cir. 2002]3; Arizona v. Johnson, 000 US 07–1122 [2009]) make accountable when, why, and how police officers put their hands on people to search them for weapons and contraband. In justifying a particular search or seizure, an officer must be able to point to specific and articulable facts (that which can be seen, smelled, heard, and touched), which, taken together with rational inferences from those facts, reasonably warrant that intrusion. Police officers are taught that intrusions upon the body of another must be based on more than hunches, and so officers learn how to articulate perceptual objects in ways accountable to the courts. Of course, an officer’s decision to search is not always the product of rational or legal processes. There has been reinvigoration of concern, especially since the 2014 shooting of Michael Brown, in Ferguson, Missouri, and the growth of the Black Lives Matter movement that police officer judgements to search are influenced by a variety of psychosocial factors that lead to discriminatory outcomes for different social groups (Baumgartner et al. 2017). Two prominent psychosocial factors are frequently given to explain why racialized social groups experience disparate rates of searches: organizational policies and officer bias. On the one hand, many police departments have strong imperatives for officers to be proactive and initiate investigative stops (“stop and frisk” is an example). Such policies might aim to show the agency is “tough on crime” or to raise productivity numbers, arrests statistics, and so on to demonstrate to various constituencies the agency’s performance and value (Epp et al. 2014; Lande and Mangels 2017). On the other hand, some observers of racially disparate rates of police contact suggest that officers’ judgments of suspiciousness, risk, or threat, which often trigger a search, are biased: consciously, in the form of racial profiling, or unconsciously, via negative and widespread stereotypes based on race or ethnicity (James et al. 2016).

“Laying Hands” in the Police Academy   453 There are a variety of factors, such as organizational imperatives to conduct investigative stops, that influence a police officer’s decision to stop someone, and those factors might, as Epp et al. (2014) suggest, result in poor people and people of color being stopped at disproportionately high rates. Another line of research suggests that officers might hold stereotypes of criminal behavior that link skin color to judgments of aggression, threat, or violence, and this might cause officers to overestimate threat and conduct unnecessary searches and seizures (James et al.  2016). However, not all stops progress to searches. Searches mark an important stage in the back-and-forth sequence of exchanges between police and individuals during encounters and are separable from the initiating judgements and actions that open the encounter. In other words, racial disparities in outcomes of searches won’t likely be well understood by looking at the decision to search alone. As this chapter will demonstrate, officers who decide to “lay hands” on someone they have stopped learn to use specific bodily clues—suspicious gestures, unusual bulges in clothing, smells, and so on—that are far more accurate predictors of threat or concealment than skin color. In this way, professional training in “laying hands” aims to retrain officers’ perceptual abilities, replacing naïve (and sometimes biased) assumptions about who represents a threat with better data about where— and with whom—threat actually resides. Indeed, studies of implicit bias demonstrate some interesting and often counterintuitive results that reinforce the findings of this ethnographic study. In particular, implicit bias experiments of police officers versus college students (i.e., novices) decisions to shoot black or white armed/unarmed subjects in simulations (Correll et al. 2014; James et al. 2016) show that even though target skin color impacts officer response times, officers seem immune to errors, are faster to make decisions, and are more accurate. Correll and his colleagues suggest that even though novices (college students) and police officers show a prepotency to shoot (e.g., shorter reaction times for armed black targets), officers immediately overcome the tendency through cognitive control, which minimizes bias. This cognitive control develops as especially patrol officers have to “assess every person in every situation” (Correll et al. 2014), and this seems to diminish the power of skin color as a relevant cue. More recently, James et al. (2018) explicitly tested how skin color, attire, and demeanor interact as threat signals and found only hostile and confrontational behavior caused officers’ escalation of force. In my study, I offer a description of the perceptual and motoric socialization that appears geared to produce the aforementioned results. Police officers must learn to recognize patterns in what they see, hear, feel, and smell that accurately signal hidden contraband (whether weapon, drugs, etc.). As Sacks (1972) put it, police are “occupational specialists on inferring the probability of criminality from the appearances of persons present in public places” (1967, 282). Officers learn to use the movements of their hands not only to control the movements of individuals but to create a safe space in which hand manipulations of clothing can produce, that is, detect, hidden perceptual objects. This bodily instruction takes place within a symbolic and moral environment that links accuracy to obligations to their own and others’ safety. In specific regards to searches, officers must recognize not only reliable visual, olfactory, and tactile patterns to discern

454   Brian Lande whether or not a search should be conducted (e.g., feeling a bulge in the appendix area of the waistband) but detect anomalies (e.g., a bulky warm jacket on an otherwise hot day) and know how these cues vary by constantly changing context (e.g., time of day, weather, season, location).4 I also want to note that during the time I conducted this study, skin color, ethnicity, and gender were explicitly discussed as unlawful bases for conducting searches as well as being unreliable for determining threat.

Search and Seizure as Perceptual Competency “Search and seizure” has its carnal embodiment in body-to-body contact, in hands on flesh and clothing (e.g., Rubenstein 1973). Seizing is a particular way of grasping a body, and it is a socially instituted somatic knowledge—a knowledge embedded in the way officers grab fingers, the way they hold bodies and body parts with their hands, the placement of those hands on pressure points, the ability to feel a tensing opponent, and engagement in a strike or a kick of a foot to unbalance someone. Searching is also a bodily affair: a sensual tactile exploration of another’s body, where that body is encountered as an indeterminate and textured field of exploration, full of warm and sometimes sweaty flesh, tense limbs, parts to be manipulated, moved, revealed, and dodged. Taken together, “search and seizure” is a series of actions, reactions, and embodied responses that officers can adapt and align to ever-changing circumstances and conditions (no body and no situation encountered by an officer is ever exactly the same). For example, a handgun concealed in the waistband is easy to miss for a new police recruit. New recruits typically “pat” the waistband area to feel for hidden objects. But this form of holding the hand and the patting motion do not do a good job of revealing perceptible features of a hidden gun. For example, this patting motion with a flat hand is not very sensitive to hardness because of the broad surface area of the hand. Nor is it sensitive to the edges of a hidden handgun because the flat hand isn’t pliant enough to get caught on a handgun’s hard edges. A pat is, however, less invasive than what recruits will eventually learn, which looks more like hand scrunching. Moreover, how an officer searches will vary depending on the clothing and body shape of the person searched. But a novice police officer is not sensitive yet to these variations and cannot yet use his or her hands to feel like an experienced officer. It is only with the directed experience of searching for simulated weapons across a large variety of simulated encounters (typically with other recruits of different bodily morphologies, wearing different types of clothes, etc.) that novice officers acquire the background tactile knowledge by which they can search accurately. These various efforts by cadre to teach hand formations and movements—to lay hands—constitute the “body work” (Wacquant  1995) of search and seizure, whereby heterogeneous bodies are made relatively standardized. Such learning requires police to acquire a bodily know-how as well as a social aesthetic unique to policing, wherein police officers develop unique ways of moving through the world via the vehicle of their bodies (Merleau-Ponty 1962).

“Laying Hands” in the Police Academy   455 Police officers spend a good deal of their time in situations of bodily co-presence with others. In specific situations, with specific alignments of bodies and skills, some people will come to be experienced as strikable or searchable to an officer. In these moments, bodies that police officers encounter on the street are perceived almost immediately as meaningful for searching activities that will reveal possibly hidden meanings under jackets, the running of thumbs in waistlines to check for weapons, or in feeling pulses to detect the influence of controlled substances. The police officer’s world is not only a visual world but a tactile world: bodies, surfaces, and things seen by an officer are colored by how they may be felt (e.g., in a tense moment with a suspect, the suspect’s wrist suddenly stands out visually to me as grabbable, and urgently so). In other words, the detection of “deviance” in police work is shot through with a sensual, tactile, and (often) olfactory element that is crucial to the mastery of policing as a profession. While police work has been called “dirty work” (Van Maanen 1973) because officers have to deal with the stigmatized sectors of society, this status also derives from the up-close, sweaty (and sometimes smelly), body-to-body contact that frequently characterizes the job. Sustained ethnographic observation reveals that a police officer’s world contains sights, sounds, touches, and smells that are already rich in meaning and potential for action to the police officer in ways quite different from other groups. Teaching new police recruits to attune their bodily habits of movement and their perceptual sensitivities to a rich world of sensory experience is one of the greatest difficulties of becoming a police officer. But this kind of sensory attunement, that is, learning to touch and perceive competently in ways that conflict with widely held norms of social etiquette, is not unique to policing. Sensory and bodily socialization arise, sometimes quite intentionally, in a variety of social settings. One such setting is the religious sphere, for example the tradition of charismatic healing (Csordas 1997; from where I and police take the terms “laying hands”). An occupational analogy to learning to touch as a police officer can readily be found in medical settings where doctors and nurses must also learn to touch and palpitate the bodies of others in professionally competent ways (Draper 2014; Goodwin 2010; Underman 2011, 2015). In the examples that follow, I show how police recruits learned to manage their own bodies and the bodies of others through both ideological/moral and physical retraining.

Symbolic Economies of the Police Body: Learning the Value of “Laying Hands” and “Going Hands On” Relating to the Hands of Others Before police recruits ever even begin their defensive tactics or search-and-control training, they go through a phase of learning why searching and seizing matters as well as learning to recognize when such techniques should be applied. In the first days of the

456   Brian Lande police academy, police recruits begin learning about their hands in terms of the hands of others. Police often have a fascination with hands—where they are, what is in them, and what they are doing (Rubenstein 1973). Ways of approaching hands are imparted through ongoing pedagogical labor, starting at the academy and involving both peers and instructors. Recruits are taught that hands reveal intentions that often are at variance with what a suspect is saying or otherwise doing—they “leak” (Ekman 2009). Since most recruits won’t have had some prior exposure to hidden dangers, they first encounter them through stories and injunctions. In the first week of the academy, one recruit received an email from an officer, which she then recirculated, with the following advice: Develop a “Hand Fetish.” MAKE YOURSELF watch the hands before you even look at the face. They can only hurt you with their hands. If you don’t see two empty PALMS, then assume they have something in it [sic]. I can’t overemphasize this—if I have someone run from a car stop, I STILL look at his or her hands before the overall appearance for the description. If I get out at a domestic, when the people come out of the house, I’ve seen every hand there before I’ve seen their face[s]. Many experienced officers can tell you that they’ve approached a violator’s vehicle, made the “Hi, I need to see your license please” spiel, and (maybe unconsciously) watched their hands so closely, they then drop the gaze to the hands and it’s someone they know. I have done this countless times. Develop a “hand fetish”! If you have trouble getting in this habit, watch “Surviving Edged Weapons” once, and think about that butcher knife penetrating and deflating your lung, and as you hit the barn floor, you’ve lost 50% of your strength.

Such graphic testimonials were routine, and they were found in everything from the texts we studied to the videos and pictures that instructors or cadre showed during classes. They were typically deployed to sensitize a recruit’s perception of the Other’s body. “Hands are weapons,” we were told. “It’s the hands that kill you, not their eyes.” The full meaning of this email is only apparent in the context of its use in honing the visual perception of recruits and eventually linking that perception to the activities of the hand. Another instructor describes, to the SBPA class, that learning to attend to hands (as opposed to the face) may upset recruits’ routine modes of domestic or spousal interactions. Women usually are better at making eye contact and listening. But we teach you to watch hands and behavior, to see if a person is going to start fighting with you. So husbands always start complaining that when they come home with problems, that their police wives no longer look like they care! Trust me ladies, you are going to leave here being more like men than you want. But it is necessary for the job. You have to be suspicious, watch hands, and stand your ground to be a good cop.

In the early weeks of the police academy, statements like these provide recruits’ first exposures to the trade-specific competence of a police officer, defined in terms of a

“Laying Hands” in the Police Academy   457 perceptual vigilance. Here, perceived gender differences are expected to be homogenized and transformed into a specifically “police” manner of relating bodily to others. Such statements also mark how that perceptual adeptness, though appropriate to policing, is distinctly out of line with civilian expectations (especially for women). That is, such lessons also are lessons of social distinction and difference, marking and ritualizing new recruits as members of a distinctive social order. Police recruits relate to others, not by guessing the intentions of others (i.e., hypothesizing about the mental state of the other) but by perceptually attending to what is immediately available for exploration. A defensive tactics instructor demonstrated and articulated how hands “leak” intentions. “If I am speaking to you compliantly, telling you I am going with the program, lots of ‘yes sirs,’ but you see my hands balling up, knuckles white, or I bring my hands up toward my head, where my arms are now loaded for a strike, you might want to start getting worried and maybe think about getting me in restraints. Probably what I am doing is trying to soothe you with words, to get your guard down, so I can strike you with your guard down.” Throughout the training process, instructors and RTOs reinforced this lesson, emphasizing the need to watch the hands of others in the context of what is being said and done, and in the context of what was said and done in prior moments. Thus, just as recruits must acquire the proper bodily techniques for using their hands, they also have to acquire a refined perceptual schemata capable of constituting certain behaviors as suspicious and threatening, and this is often revealed by movements of the hands.

Moral Injunctions to Lay Hands When defensive tactics instructors teach recruits how to search, they also have to retool recruits’ sensibilities about proximity and closeness to others (Hall 1966; Kendon 1990). One way this is done is by suggesting the practical, moral, and social consequences of not using the hands well. Instructor  F.  from M.  Police Department and Instructor  S.  from the S.  County Sheriff ’s Office teach us how to do full searches. F. tells us to be aggressive in our searching: “You can’t be afraid to touch people. Don’t just glide your hands over them.” F. demonstrates on S.; he pats and grabs at S.’s clothes, bunching it up and manipulating it until he is satisfied that there are no objects. He does this all over his body, including the groin area. F. says, “If you have done your search properly, you should know if your suspect is hanging to the left or right.” [There is masked laughter from the class.] He continues: “That is how thorough you need to be. If you’re not, you will have some pissed-off deputies at the jail when they find that you didn’t find all the weapons. But if you are out working West county, and you have no backup or cover and you have no jail nearby, you are going to have the suspect in your car for half an hour or more. For your own safety you need to make sure that he is clear.”

What F. and S. try to convey is the need to overcome most recruits’ visceral discomfort with touching a stranger’s body. Knowing “if your suspect is hanging to the left or

458   Brian Lande right” is a sign of competence that recruits eventually begin to adjust to with practice. The instructors imply that continuing lack of competence, especially if it derives from personal distaste, will have social consequences for officers’ professional relationships with correctional staff and sheriffs’ deputies at jails. It will also have consequences “for your own safety.” This type of morality is situational and grounded in tacit expectations about what interactants (correctional staff and police officers) expect from one another in handing off prisoners. For example, Instructor S. begins a segment by articulating a moral order specific to policing: “It’s important that, while we are practicing today, you do everything right. When you are doing searches, you are going to be going places that you find uncomfortable. To do this job, you are going to have to get over that. If you give me a guy that you say you have searched but you didn’t feel around his crotch because you don’t want to and I get shot because you missed a gun, guess who is responsible? You are!” The moral violations articulated here outline the types of “trust” that officers presume about each other’s competency in searching and seizing. Trust is taken for granted because most of the work of prisoner transportation and the “handing off ” of prisoners could not take place if members of law enforcement did not already expect the work of searching to have been completed. In this regard, the ability to competently search a prisoner or suspect is a moral problem to the extent that such searches are taken as necessary and presumed as part of ongoing interactions between officers and other staff. The broader problem of cultivating a willingness to enter into physical engagement with others—especially violent conflict—is addressed in similar moral terms. The most regular form this takes is the “war story.” In these, instructors describe rookie officers, fresh from the academy, who are fired or resign after their first violent encounters. For example, one police officer, during defensive tactics training, told the academy class: I had a new trainee. Did great in defensive tactics at the academy, was a black belt in judo. But when I got into a fight while he was in the third phase of his field training program, he just stood there, frozen, while I wrestled with this suspect. The other officers on scene jumped in immediately, but not my trainee. It’s one thing to fight in a safe place like the dojo [martial arts training gym], but it doesn’t mean you are ready to jump into a street fight. The trainee resigned after I explained that his conduct was completely unacceptable for a police officer. If he hadn’t, he would have been failed out of field training by me!

Stories like this make clear what is expected of recruits and suggest standards of action in dangerous situations. They perform the triple job of forecasting what recruits can expect during field training, informing them of the consequences associated with unwillingness to fight, and prescribing a proper protocol of action across varying contexts in ways that departmental policies, legislation, and constitutional law cannot. Ultimately, the moral lessons conveyed are not simply attitudes, values, or expectations, but a particular tempo of action: recruits are to act unhesitatingly when a danger presents itself, not wait until the situation has escalated.

“Laying Hands” in the Police Academy   459

Overcoming Taboo It is one thing for cadre to demand that recruits touch others as a moral obligation. However, if recruits are to “lay hands” and meet the moral demands of their occupation, it is ultimately they who must overcome their visceral distaste for getting close to people and violating spatial norms for interaction. In so doing, recruits must confront gendered, sexualized, and above all bodily taboos surrounding interpersonal touching in everyday life. Learning to “take the person physically in hand” (Rubenstein 1973, 290) takes time. During training, the experience of learning to “lay hands” is saturated with embarrassment, stuttering, blushing, and mumbled apologies to those being searched. For example, a male recruit having his waist area searched by a female recruit shouted, “Hey now! We don’t know each other that way!” Another cadet reacted similarly as I checked his legs and groin area for “contraband” during training. As I patted him down with the back of my hand, he shouted, “Wow, Lande, what you trying to do? Lande just molested me!” Recruits must overcome “civilized” (Elias 1939) sensibilities that place strict limits on how, with whom, and when it is appropriate to touch others. Those limits are internalized, according to Elias, as feelings of shame and embarrassment. In the police academy, the touching of bodies often is articulated as a violation of sexual mores, such as in jocular accusations of being “molested.” These feelings, expressions, and jokes centered on the shame or embarrassment of touch are also something nurses and doctors learn to overcome, often through similar use of simulated or role-play examinations, for example, using gynecological teaching assistants to facilitate instruction of pelvic exams (Underman 2015). In other words, in addition to the investment in bodily work to hone professional tactile competency, police officers and medical professionals alike must invest in emotional work that bounds these socially unusual forms of touch. Part of what makes touching so viscerally uncomfortable is that recruits have already learned habits for how to touch men and women. How it feels to touch someone—of one’s own sex or a different sex—conditions how recruits initially search other. The search-and-seizure training process is almost always awkward when male recruits have to search women. Routine strategies for managing proximity between men and women create special problems to overcome, requiring gender-specific bodily techniques for searching. Instructors frequently express concern that male officers will be too afraid to search women out of fear of lawsuits for sexual harassment or misconduct. So even though at times cadre warn recruits of the legal liability of lawsuits, “feeling rules” (normative injunctions about how a person ought to feel, Hochschild 1983) are invoked when recruits are still expected to bracket their worry about litigation when other “officer safety” concerns take prominence. Instructor S. explained: When you practice with women, don’t do it half assed. I am not saying you grab their breasts or touch their groin, but bring your hand in between their cleavage, that’s where weapons are likely to be. You should be able to tell what kind of bra they are wearing. There are also techniques for checking women’s breasts without

460   Brian Lande violating them. Have them pinch their shirt and bra so that any objects fall free. To check their crotch area, slide your hand around the belt area, check for guns. You don’t have to pat them down the same way as a male. In fact, your department may have policies that prohibit you [from doing so]. But the fact is, you aren’t always going to have a woman officer around and you have to guard yourself, and that means conducting a thorough search. When you do a search, I don’t just want you brushing your hand over the person’s clothes. You need to pat and then grab. You pat to feel for hardness or sharp objects and then, if safe, you grab the clothes and manipulate the clothing to feel for missed objects like small knives, screwdrivers, etc.

The “feeling rules” recruits learn from their instructors dictate that visceral discomfort with intimate searches does not excuse an inadequate search. Recruits also learn, through small degradation ceremonies, that if they try do a search “half assed” that they may be chastised and corrected. To help recruits manage their discomfort, instructors provide them with ways of using their hands that are considered less offensive. A.L., a white female police recruit in her mid-twenties (now with a small city police department) describes how she learned to move past the embarrassment associated with taboos on searching another’s body: It is real awkward at first. You just don’t go around touching people every day and you aren’t used to touching people’s crotches! I remember when we first started practicing searches that I just wanted it to be over with, and I would speed through the search and miss stuff, because it made me feel so uncomfortable. What made it get better was being given some order in which to do the searches. Then, I was so much less focused on the fact that I am touching someone and more focused on “am I searching them in the right sequence.” Like during the academy, we learned this “S” style of searching where you swept down the front of a person in an “S” shape. [We also learned] to break the body down into quadrants to search. What mattered was having some way of doing the search, and that made it much easier for me.

To overcome the awkwardness and displeasure of searching taboo areas of the body, A.L., like many recruits, focused on the search technique rather than on the person being searched. These practices were then repeated until they became routinized and thorough searches simply seemed necessary. Above all, whether examining how recruits learn to look at hands, how they learn to feel hands, to perceive threats, or even the physical and affective dimensions that color touching and searching, becoming a police officer requires a sentimental education of sorts. That is, to be a police officer is to participate in a range of situations (discourses, cadre demonstrations, and role-playing exercises) that, over six months, retools how recruits see and feel and, in turn, affects the content of their perception and emotions about their social world.

“Laying Hands” in the Police Academy   461

Inculcating Practices: “Laying Hands” and “Going Hands On” as Bodily Techniques Exhortations to engage suspects fully and without reluctance take place in the midst of continuous bodily training: physical drills, exercise, scenarios, and so on. In this context, engagement entails demonstrations (by instructors), imitation (by recruits), and continuous visual, tactile, and verbal feedback (provided by instructors and recruits alike). At the police academy, interactive scenarios with role players were used to manage an increased acceptance of and familiarity with violent conflict and close bodily contact, translating the moral obligation to act into physical readiness for such action. Cadre use demonstrations and scenarios to create a visceral sense of what recruits ought to expect once they leave the academy and start working the streets. As such, scenarios can be nerve wracking, filled with adrenaline, and, frequently, real pain. The form, frequency, and content of scenarios take recruits’ deliberate practice of search and seizure and put it in a social process that is the attenuated form of the “reality” of the streets, at least as cadre see it. As Hoffman puts it in his study of how boxers prepare for bouts, “To fully grasp the sociology of events or performances, one needs to look at how people prepare for them. Simulations are a means by which groups index and simplify what aspects of the future they should worry about. “The greater the risk and consequence attached to an event or performance, the more likely one is to find an elaborate range of simulations used to prepare for it” (Hoffman 2006, 189). In a similar way, learning the procedures or rules of searching is of little value unless recruits can also index a practice or grasp the urgency of searching “well.” Scenarios are used to sensitize recruits to hidden dangers by showing them how their existing perceptual procedures for detecting bulges, bumps, hardness, pointiness, and so on may reveal hidden dangers. A wide range of props are involved, including plastic imitation firearms of different sizes, plastic imitation knives of different shapes and sizes, and even plastic baggies with imitation contraband meant to simulate the textures of marijuana, cocaine, and methamphetamine. These training forms offer recruits the opportunity to link newly acquired schemes of action and perception in contexts that capture salient features of “real-life” practice. First, Instructor T. demonstrates the proper feeling technique, using Instructor S. as his suspect. When I was standing and waiting, I saw S. hiding all kinds of knives and small guns on his body. T. is now trying to find them. He demonstrates his feeling technique by exaggerating his movements. He goes to the pockets, palm down, thumb at the top edge of the pocket. He then grabs upwards on the pocket, bunching it up and using the whole palm to feel. He then says, “The wrong way to do it is like this.” He then puts his hand sideways and makes a scrunching movement where he only feels with his fingers and touches a much smaller surface area. “But this is the way that most people grab.”

462   Brian Lande To teach us the importance of conducting a thorough search, F.  divides us into “officers” and “suspects.” Officers are taken outside while S. and F. stay with the suspects. S. pulls out a bag of “goodies,” as he calls it, filled with prohibited weapons, including knives concealed as pens, combs, and belts. We hide all of these objects on our bodies. There are small knives that fit in our shoes, socks, and underwear, dangling knives that are tied to the inside of the pants and hang down by the crotch area where officers are less likely to be thorough. Adrian is also given a knife sheath to wear on his arm, under a long-sleeved shirt. The officers are then called in and told to conduct their search. S. explains some rules. He says, “Just so you understand that this is deadly serious business, there will be consequences for mistakes and for being sloppy. I am going to PT you [i.e., order you to do physical training] every time you make a mistake. So if you miss one object, I will have you do grass drills to punish you. If you miss more, I am going to PT you till you really do hurt.” Daniel does my search. He is fairly thorough, but I am wearing the knife belt. He checks around my belt but does not take it off to discover a knife built into the belt buckle. When Instructor B. comes and evaluates us, he remarks to Daniel, “You have to remember that anything can be used as a weapon or contain a weapon. You missed this belt right here. You could be dead right now! Check everything.” S. has everyone who missed an object go outside and PT for about five minutes. Sweaty and tired, we come back in and do the scenario over and over again until the entire class is more or less aggressively searching and almost no items are missed. (10/8/06)

At the end of academy training, recruits are presented with scenarios, populated by unknown role players, where they have to perform what they have learned in situations that approximate the patterns, processes, and dangers of “reality.” During one of the final scenarios, recruits are dispatched to a “suspicious” person loitering behind a closed business at night. When recruits come upon the person and find him playing with the rear door, those that do not keep track of hands, do not safely control the person with their hands (seizure), and then perform a competent search find themselves either being failed in the scenario by the evaluators or being painfully shot by a Simunitions (a colored and clay-like projectile propelled by gun powder from a real gun) from a hidden firearm. More important, failure to locate the weapon during the evaluation scenarios is sufficient to fail the scenario evaluations and, hence, to fail out of the police academy. As such, assertiveness and diligence in conducting searches, when able, during final scenario testing, are a must for entry into the police profession.

Discussion and Conclusions In the police academy, recruits are exposed to a new world of touch where they learn the value of being able to grab and palpitate well. Being able to coordinate action and perception through the hands is what it takes to be a worthy member of the police world.

“Laying Hands” in the Police Academy   463 But it is not enough to know that police value the skilled use of the hands as a form of control and a moral obligation (i.e., officer safety). We must also understand how such valued use of the body is enacted and constituted. This chapter has described the social reorganization and education of police recruits’ bodies as they master techniques of searching and seizing. When recruits enter the police academy, they are expected to learn how to touch, grab, and strike (search and seize), manipulating and exploring their world through the vehicle of their bodies. Search and seizure is thus enacted, not as a set of juridical principles or rules to be followed, but as dispositions to act, feel, and perceive accurately objects otherwise hidden from their civilian counterparts. As a result of their education, police do not come to know “others” (suspects and citizens) simply by cognitive classification. Instead, recruits learn how to physically connect and engage others in the context of ongoing and shifting situations. As this chapter illustrates, understanding search and seizure requires us to go beyond external accounts of how “search and seizure” is structured in law or departmental policy to an internal analysis of the mundane details of drilling, scenarios, war stories, admonishments, and praise that inculcate skilled ways of deploying the hands. In doing so, we can account for how recruits come to feel the world differently as they try to meet the moral and professional demands to act in an appropriate, “police-like” fashion. I came to understand how these police bodies were created through a unique method: carnal ethnography. This method involves the active use of the body of the ethnographer not only as an instrument of observation but as an organism open to modification through participation in the process under study, and it allows us to reveal the frequently tacit relational processes through which bodies and selves are constructed. A focus on the lived experience of tension and vulnerability that must be managed during searches has meant researchers and policymakers have missed a key understanding of how these intimate encounters can explode into violence. Questions about how people come to be seen as searchable and how searches are successfully or unsuccessfully conducted are missed if we only focus on discourse and deliberative thought (Summers-Effler et al. 2015). To change the outcomes of searches, especially to make them safer for all involved, we must grasp how and why officers search, how officers close the distance with another person, and how they maintain a felt degree of control so as to mitigate perceived risk. Consider what it must take for officers to choose to get close to someone they believe has a weapon and search that person. Throughout this chapter I have emphasized that search and seizure is a skill that can be performed with varying degrees of expertise. It is a perceptual skill and indeed an execution of emotional self-control. If we wish to reduce the number of unnecessary searches and seizures, this study suggests that policymakers and, indeed, police departments themselves take the notion of expertise more seriously. The search-and-seizure training I observed focused extensively on improving recruits’ ability to detect hidden objects. Much of the training officers receive in the academy and later in their careers during in-service training, only haphazardly, through thousands of fragmented drills, scenarios, and “war stories” aims at improving accuracy. In fact, I would describe the police academy’s focus on accuracy during searches as near obsessive at times when it comes to officer safety.

464   Brian Lande Yet training could benefit from a much more highly rationalized system of training in searches, one that builds on an understanding of what leads to expert performance and validates methods for speeding up acquisition of expertise in conducting searches. There is evidence that experimental research and interviews can be used to identify reliable cues to detect the carrying of concealed weapons (Meehan and Strange  2015). Identifying objectively reliable and observable visual and tactile cues is a prerequisite for developing training to improve the perceptual skills involved in search and seizure. Such information can be integrated into training simulators (computer/video based), short search drills, and training scenarios (role plays). In any case, such training could improve the chance officers will attend to relevant signals rather than to unreliable or unlawful cues, such as skin color or gender. Further, being sensitive to false or unreliable signals saves individuals from unnecessary and potentially intrusive searches. In other words, training aimed at facilitating the perceptual expertise should decrease the likelihood that some groups will face unnecessary and intrusive bodily encounters with police while others are spared. I have argued elsewhere that training interventions focused on improving expertise, not just mitigating bias or error, is critical to improving police performance (Klein et al. 2015), and it is no different when discussing performance during a search. I have shown, elsewhere, that even simple, low-fidelity scenario training focused on cue detection as part of situational judgement tasks can improve judgment and decision making in law enforcement situations (Halverson et al. 2015; Klein et al. 2015). Specifically, such training can improve pattern recognition of relevant cues for specific tasks and improve the sense-making process whereby individuals understand how cues are related to one another in meaningful ways. It is possible that similar training focused on linking relevant cues to good legal and investigative reasons could improve the quality of officer judgements about whether or not a situation calls for a search.5 Another implication of this research is the emphasis on searches as an entanglement of corporeal beings. Searches are felt as intimate, awkward, and tense, and they regularly induce feelings of vulnerability among everyone involved. During my research, I documented countless instances of the emotion work officers do to manage their feelings of awkwardness and vulnerability during searches. What I did not appreciate until several years into my career was the absence of emotion work geared to managing the emotions of those being searched. What I have since learned is that this is dangerous and has clear consequences for officer safety and civilian safety. I learned this the hard way by finding myself in fights caused by insufficient understanding of how experiences of vulnerability and shame, especially in public, by those being searched can trigger violence. Worse, much of the time this is preventable. This insight offers a significant practical implication for police training. When doctors touch their patients, they do so in a manner that is intrusive but accompanied by a high degree of trust. Officers also touch people in a way that is intrusive but without the accompanying trust. As a consequence, even as officers become minimally competent in conducting searches, they often are not taught the basic social tact necessary to make searches more predictable, consensual, and less violating for those being searched. This

“Laying Hands” in the Police Academy   465 too is a skill (Bayley and Garofalo 1989) and must change. One way to do that is to better appreciate social dynamics of searches that entwine the emotions and bodies of police and civilians; otherwise we will continue to struggle ineffectively against the twin crises of police–civilian violence and widespread mistrust of the police. Police training could and should teach officers some basic social competencies to integrate into their search practices. The author, along with other law enforcement practitioners and researchers such as Jonathan Wender, have implemented just such a training, “T3: Tact, Tactics and Trust,” with the support of the Bureau of Justice Assistance (https://www.bja.gov/programs/valor.html). This training goes well beyond the emphasis on accuracy, safety, and control traditionally emphasized by police training and adds a focus on the social management of police–civilian encounters. For example, officers are taught to frame and explain searches to those being searched. Individuals being searched are often caught off guard by a search or may have prior trauma causing touch by untrusted others to be deeply triggering. Individuals may not know why they are being searched or if the officer has the right to conduct a search. When an officer provides a cognitive framework for what is occurring and an explanation of why, the individuals searched aren’t just left in the position of having the search “done to them.” Officers are also taught to provide clear verbal instructions and even to ask subjects if they have questions regarding the search about to occur. Sometimes a civilian just having their concerns heard is enough to dissipate the conflictual tension that might turn to violence. Officers also learn about the importance of “face work,” the work of impression management to minimize risk of shame, humiliation, and loss of face that can occur during police searches. As simple as this sounds, this concern for the emotions, understanding, and well-being of others is often left out of search-and-seizure training. Such basic courtesies and ­interactions can make searches less alarming and violating, reduce social friction, ameliorate feelings of shame or humiliation, and otherwise humanize a contact that is likely unwanted and intrusive. Most important, it makes searches safer for everyone involved. These training implications, gleaned from close examination of the bodily education officers receive in training, do not resolve issues of discriminatory outcomes. However, they do suggest ways of mitigating some of the social harms that will occur when searches, inevitably, must occur.

Notes 1. All academies, departments, and names in this chapter are pseudonyms. 2. An officer can briefly detain a person, based upon reasonable suspicion of criminal activity, long enough to dispel the suspicion or to allow it to rise to the level of probable cause for an arrest. The officer is also permitted to do a limited “frisk” search of the person without a warrant. Before the officer can frisk search the subject, he or she must (1) have articulable facts that the person could be armed with a weapon; (2) limit the search to pat searching the outer garments of the suspect to feel for objects that might be weapons; (3) only reach inside the clothing after feeling such objects.

466   Brian Lande 3. This case law established that police officers can detain, in hand restraints or at gunpoint, persons whom there is a reasonable belief pose a danger to the officer’s safety (James et al. 2016). 4. It should be noted that criminologists, sociologists, and economists have also looked at “hit rates” (i.e., accuracy) to determine whether or not there is bias in police decisions to stop and search (for an excellent review, see Harcourt 2004). These studies look at aggregated accuracy, that is, across a population of officers, for the rate of successful searches where something (e.g., drugs) is located. These studies do not speak to expertise or the issue of whether or not some officers have higher “hit rates” than others, how hit rates change over the career of an officer, why there is variation between officers, or even if accuracy can be improved. 5. Another similar study reduced racial bias in applications of force in training environments by using high-fidelity simulators where suspect race and presence of a weapon were presented as statistically unrelated in scenarios (Plant et al. 2005).

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“Laying Hands” in the Police Academy   467 Harcourt, Bernard. 2004. “Rethinking Racial Profiling: A Critique of the Economics, Civil Liberties, and Constitutional Literature, and of Criminal Profiling More Generally.” The University of Chicago Law Review 71, no. 4: 1275–1381. Henry, Vincent E. 2004. Death Work: Police, Trauma, and the Psychology of Survival. Oxford: Oxford University Press. Heritage, John. 1984. Garfinkel and Ethnomethodology. Cambridge, MA: Basil Blackwell Ltd. Hochschild, Arlie. 1983. The Managed Heart: Commercialization of Human Feeling. Berkeley: University of California Press. Hoffman, Steven. 2006. “How to Punch Someone and Stay Friends: An Inductive Theory of Simulation.” Sociological Theory 24, no. 2: 170–193. Hunt, Jennifer. 1985. “Police Accounts of Normal Force.” Urban Life 13, no. 4: 315–341. James, Lois, L. Fridell, and F. Straub. 2016. “Psychosocial Factors Impacting Officers’ Decisions to Use Deadly Force.” The Police Chief: 44–51. James, L., S. M. James, and B. J. Vila. 2016. “The Reverse Racism Effect: Are Cops More Hesitant to Shoot Black Than White Suspects?” Criminology & Public Policy 15, no. 2: 457–479. James, L., S. M. James, and B. J. Vila. 2018. “Testing the Impact of Citizen Characteristics and Demeanor on Police Officer Behavior in Potentially Violent Encounters.” Policing: An International Journal of Police Strategies & Management 41, no. 1: 24–40. Katz, Jack. 2001. How Emotions Work. Chicago: The University of Chicago Press. Kendon, Adam. 1990. Conducting interaction: Patterns of behavior in focused encounters. Cambridge, UK: Cambridge University Press. Klein, G., H. A. Klein, B. Lande, J. Borders, and J. C. Whitacre. 2015. “Police and Military as Good Strangers.” Journal of Occupational and Organizational Psychology 88, no. 2: 231–250. Lande, Brian, and Laura Mangels. 2017. The Value of the Arrest: The Symbolic Economy of Policing.  European Journal of Sociology/Archives Européennes de Sociologie  58, no. 1: 73–112. Manning, Peter. [1977] 1997. Police Work. Cambridge, MA: The MIT Press. Mauss, Marcel. [1950] 1979. “Body Techniques.” In Sociology and Psychology: Essays. London: Routledge & Kegan. Meehan, Nathan, and Christopher Strange. 2015. Behavioral Indicators of Legal and Illegal Gun Carrying (No. NRL/MR/550811--15-9597) Washington, DC: Naval Research Lab, Information Technology Division. Merleau-Ponty, Maurice. 1962. The Phenomenology of Perception. London: Routledge. Plant, E. A., B. M. Peruche, and D. A. Butz. 2005. “Eliminating Automatic Racial Bias: Making Race Non-diagnostic for Responses to Criminal Suspects.” Journal of Experimental Social Psychology 41, no. 2: 141–156. Rojek, Jeff, Alpert, Geoffrey, and Smith, Hayden. 2012. Examining Officer and Citizen Accounts of Police use-of-force incidents. Crime and Delinquency 58, no. 2: 301–327. Rubenstein, Jonathan. 1973. City Police. New York: Farrar, Straus, and Giroux. Sacks, Harvey. 1972. “Notes on Police Assessment of Moral Character.” Studies in Social Interaction xx: 280–293. Summers-Effler, Erika, Justin Van Ness, and Christopher Hausmann. 2015. “Peeking in the Black Box: Studying, Theorizing, and Representing the Micro-foundations of Day-to-Day Interactions.” Journal of Contemporary Ethnography 44, no. 4: 450–479. Thompson, Evan. 2010. Mind in Life: Biology, Phenomenology, and the Sciences of Mind. Cambridge, MA: Harvard University Press. Underman, K. 2011. “ ‘It’s the Knowledge That Puts You in Control’: The Embodied Labor of Gynecological Educators.” Gender & Society 25, no. 4: 431–450.

468   Brian Lande Underman, K. 2015. “Playing Doctor: Simulation in Medical School as Affective Practice.” Social Science & Medicine 136: 180–188. Van Maanen, Johnathan. 1973. “Observations on the Making of Policemen.” Human Organization 32: 407–418. Wacquant, Loic. 1995. “Pugs at Work: Bodily Capital and Bodily Labour among Professional Boxers.” Body & Society 1, no. 1: 65–93. Wacquant, Loic. 2003. Body and Soul: Notebooks of an Apprentice Boxer. New York: Oxford University Press. Waegel, William B. 1984. “How Police Justify the Use of Deadly Force.” Social Problems 32, no. 2: 144–155. Weider, Lawrence. 1974. Language and Social Reality: The Case of Telling the Convict Code. The Hauge: Mouton.

chapter 27

The Pl ace of th e Body i n R esista nce to I n tim ate Pa rt n er V iol ence What Do We Know? Valli Rajah and Meg Osborn

Introduction Many researchers characterize intimate partner violence (IPV) as a gender-based crime because 90 percent of those who are victimized by partners are female (Roberts 2005). Based on the assumption that women are victims, early IPV research downplayed women’s ability to challenge male violence and control. Scholarship, however, increasingly recognizes that many women resist violence in their intimate relationships through a range of oppositional acts (Abraham  2005). This work presents a nuanced picture, which recognizes that resistance is not only contoured by the context in which intimate partners are situated, but also that women resist their violent partners for diverse reasons, including attempts to secure critical resources, enhance physical safety, or even maintain a subjectively important symbolic boundary (Abraham 2000; Rajah 2007). This chapter argues that scholarship on resistance in the context of IPV should more fully examine the role of body and embodiment, that is, how our bodies shape the ways in which we act in and perceive the world. To move toward such an understanding, the authors undertake a textual analysis and synthesis of existing knowledge. This approach, often called a “scoping review,” is particularly useful for mapping concepts, forms of evidence, and identifying gaps in scholarly research. This work is guided by the following questions, which are addressed in turn: (1) What is the current state of knowledge regarding resistance, the body, and embodiment in the context of IPV? (2) How does

470   Valli Rajah and Meg Osborn this literature discuss and conceptualize embodiment in the context of resistance? (3) What can we learn through a deeper analysis of embodied resistance in the context of IPV? This chapters concludes with a discussion of the implications of what was learned in this study.

Assessments of Women’s Agency in Intimate Partner Violence Research Prominent ideas about what influences IPV coexist in an uneasy relationship with ideas about the role of choice and the capacity of victims to redress and remake their circumstances. This perspective reflects broader cultural views as, in American society, agency and victimhood are often seen as opposed (Mahoney 1994). Typically, “agency does not mean acting for oneself under conditions of oppression; it means being without oppression, either having ended oppression or never having experienced it at all” (Mahoney 1994, 64). Although academics now hold a nuanced view of women in violent relationships, historically, ideologically inflected ideas about victimhood and agency have animated scholarly work. Historically, two distinct interpretations have appeared in IPV research, which differ from each other on the matter of agency. In the first view, women are seen as submissive objects that help perpetuate their own oppression. In line with well-recognized theories of learned helplessness, much of the early literature on partner violence psychologized abuse as a “women’s problem,” where, due to their childhood experiences, women either become conditioned to tolerate abuse or learn to respond aggressively to interpersonal conflict, thereby increasing their risk of victimization by intimate partners (O’Leary  1988). Alternatively, researchers argue that macro-cultural arrangements— and not those related to individuals—best explain the violent victimization of women by their intimate partners. Sociologists writing from a feminist perspective, for instance, argue that IPV is an expression of the patriarchal values of society at large, and of the discrepancies in intimate relationships that they perpetuate (Dobash and Dobash 1979). In an important advance, feminist work has framed women involved in situations of partner violence as “survivors” who are angry, resourceful, and cognizant of their active capacity to resist violent victimization. Even so, this work largely paints a picture of women as constrained by the threat of violence. Over the past decade, thinking about both IPV and women’s responses to it has grown increasingly complex. Situated within this scholarship is research on women’s opposition to partner violence, which identifies several types of resistance and examines the contexts in which they take place and the motivation behind these acts (Abraham 2005). Women typically resist their partners’ violence through small acts that undermine male control (Hayes 2013). In addition, acts of everyday resistance may be part of a broader

The Body and Intimate Partner Violence   471 process of leaving a violent partner (DeKeseredy and Schwartz 2009). Research further indicates that women may resist violent partners through their own acts of violence (Johnson 2006). The nuance of this work is commendable, yet scholarship on resistance in the context of IPV should recognize the importance of bodies and embodiment. Specifically, research should investigate how individuals’ experience of IPV is informed by their physical and emotional practices and the cultural and social systems in which they are embedded. Developing a corporeal orientation to women’s responses to IPV is important to both shepherd more just outcomes in the legal arena and more accurately capture women’s experiences. To explore how existing literature addresses resistance, the body, and embodiment in the context of IPV, the authors conducted a scoping review and textual analysis of existing social science research.

Scoping Review Purpose and Methods A scoping review entails quickly and efficiently mapping the breadth and depth of empirical research in a given area, including key concepts, characteristics, and findings (Arksey and O’Malley 2005; Levac, Colquhoun, and O’Brien 2010). Scoping reviews can be considered a relatively new technique for evaluating research literature. The most frequently cited methodological guidelines for the practice were outlined by Arksey and O’Malley in 2005; since 2012, the number of published scoping reviews has increased steadily, particularly in health and health-adjacent disciplines such as psychology, sociology, and education (Tricco et al. 2016). In contrast to systematic reviews, which often center on highly specific research questions and may only include particular study designs, scoping reviews present an overview of all relevant literature on a topic regardless of the approach used and do not attempt to evaluate the methodological rigor of the materials included (Arksey and O’Malley 2005). Scoping reviews may be undertaken for a variety of purposes, including examining the extent and nature of existing research to identify gaps in the literature (Arksey and O’Malley 2005). They can be of particular usefulness in exploring complex research questions that span multiple disciplines (Peters et al. 2015). Importantly, the process of conducting a scoping review is iterative and reflexive, requiring researchers to adjust search and analysis strategies to capture a comprehensive range of evidence and develop an in-depth understanding of it (Arskey and O’Malley 2005). For the current study, the authors drew on Arksey and O’Malley’s (2005) approach to determine the extent to which social science research on resistance in the context of IPV has incorporated discussion and theorizing about the body. By using a scoping methodology, the authors were able to capture relevant research originating from multiple—and occasionally unexpected—academic disciplines, and that utilized a variety

472   Valli Rajah and Meg Osborn of approaches to explore related concepts. The analysis, which offers insight into the current state of social science inquiry about the role of the body and embodiment in situations of IPV and how such violence may be resisted, provides a basis from which to guide future research and theorizing.

Search Strategy For inclusion in this study, the authors conducted searches of published academic journal articles discussing resistance within the context of IPV. Two combinations of search terms (“domestic violence” + “resistance” and “partner violence” + “resistance”) were entered into a Scopus database keyword search. No date restrictions were specified. This produced a total of 36 results once duplicates were removed. A cursory review of these items suggested that the search terms had been overly restrictive; therefore, the authors conducted a second set of Scopus searches with the above terms that included article titles, abstracts, and keywords. This produced a total of 184 results once duplicates were removed. In an attempt to more closely identify articles discussing embodiment, a third set of Scopus title/abstract/keyword searches was conducted, separately adding the terms “body,” “embodiment,” and “emotion” to the paired search terms. However, this produced a total of only 14 results once duplicates were removed; therefore, the authors decided to use the results of the second search (n = 184) as the current sample. Each article was logged in an Excel spreadsheet including the following information: author(s), publication year, title, abstract, academic discipline, and place of publication.

Article Screening First, book chapters and book reviews were excluded, as were articles unavailable in English. Next, both authors manually reviewed the list of abstracts to remove articles that were judged to be outside the scope of the current study. For example, some articles identified by the Scopus search discussed the term “resistance” only within the context of HIV drug resistance, or of mental health patients’ resistance to treatment, without mentioning IPV; these were omitted from the final sample. This resulted in a narrowed list of 67 articles. Full text copies of each article were then collected and reviewed. Next, the authors removed articles that did not include descriptions of the body, embodiment, or victims’ physical experiences and characteristics. Notably, over half the articles in the sampled literature on IPV and resistance—38 out of 67—made no mention of the body or embodiment. Categories were added to the Excel spreadsheet noting each article’s definition of the term “resistance” and including examples of language used to describe victims’ bodies, physicalities, and emotional states. Authors resolved any

The Body and Intimate Partner Violence   473 discrepancies by conferring with each other. This process resulted in a final sample of 29 articles.

Review and Analysis To enhance consistency in interpretations and the validity of our results, both authors reviewed each article closely to extract information regarding the ways in which resistance, the body, and embodiment were conceptualized and discussed within the context of IPV (Daudt, Van Mossel, and Scott 2013). This information included descriptions of actions, reactions, emotions, strategies, and experiences that arose throughout the articles selected. In addition, the authors noted information on the goals and objectives of the articles, as well as the related concepts commonly focused on in conjunction with resistance and the body. When extracting text and making meaning out of our data, the authors identified selections that clearly illustrated the key concepts and illuminated, sometimes through omission, directions for future research (Daudt, Van Mossel, and Scott 2013). Finally, while the authors extracted several data segments, a limited number are presented in this abridged textual analysis.

Results of the Scoping Review The first question that the scoping review addressed is: What is the current state of the literature addressing resistance, the body, and embodiment in the context of IPV?

Focus, Design, and Setting The 29 articles in the final sample were published between 1999 and 2017 in twenty-three separate academic journals, which spanned thirteen disciplines according to Scopus’s categorization system, including sociology, psychology, law, gender studies, and several health-related fields (see Table 27.1). Studies were conducted in nine different countries (Canada, Ethiopia, India, Lebanon, Mexico, Nicaragua, South Africa, United Kingdom, United States), with the United States as the most frequent setting. (In addition, one study, while conducted in the United States, relied on a respondent sample of women who had immigrated from South Sudan [Faria 2017].) Study designs were overwhelmingly qualitative in nature, with methods including interviews, participant observation, focus groups, and individual narratives. In addition, the sample included 2 theoretical/ conceptual papers, 3 articles reviewing or synthesizing existing literature, and 1 article offering context and practice illustrations for trauma-focused caregivers.

Year

2013

1999

2010

2016

2003

2001

2006

2015

2007

2003

2017

2012

2013

2015

2006

Author(s)

Allen and Raghallaigh

Belknap

Belknap

Campbell and Mannell

Cavanagh

Cavanagh et al.

Chantler

Crann and Barata

Davis

Elizabeth

Faria

Gondolf

Hayes

Helsel

Johnson

Law

Religious Studies

Arts and Humanities

Law

Cultural Studies

Gender Studies

Health Professions

Law

Gender Studies

Sociology and Political Science

Social Sciences

Public Health, Environmental Health, and Occupational Health

Health Professions

Psychiatric, Mental Health

Gender Studies

Discipline

Table 27.1.  Results of Literature Search

N/A

563 female partners of men in US-based IPV intervention

30 US-resettled South Sudanese women

N/A

22 female domestic violence shelter residents in Laneville, NY

16 women in southern Ontario who had experienced IPV

23 women from Manchester, UK, who had experienced IPV

122 Scottish men who had used violence against an intimate partner

136 Scottish women who had experienced IPV by a male partner

N/A

9 young urban women in Veracruz, Mexico

18 rural Midwestern US women previously or currently experiencing IPV

39 Ethiopian women

Sample

Qualitative interviews

274 women from Pennsylvania

Practice recommendations N/A

Review article

Quantitative data

Qualitative interviews

Theoretical/Conceptual

Interviews/Observation

Phenomenology/ Interviews

Interviews

Qualitative interviews

Qualitative interviews

Review article

Individual narratives

Interviews

Focus groups

Study Design

2007

2016

2014

2014

2007

2012

2006

2007

2005

2016

1999

Martin, Taft, and Resick

Mills

Pain

Pain

Panchanadeswaran et al.

Pyles et al.

Rajah

Rajah

Rosen et al.

Salazar, Goicolea, and Öhman

Sen

IPV, intimate partner violence.

Thomas, Joshi, and 2014 Sorenson van Schalkwyk, Boonzaier, 2014 and Gobodo-Madikizela

2016

Khoury and Webhi

Gender Studies Gender Studies

Geography, Planning and Development

Health Professions

Law

Law

Law

Gender Studies

Health Professions

Geography, Planning and Development

Cultural Studies

Reproductive Medicine

Clinical Psychology

Public Health, Environmental and Occupational Health

Grounded theory/Focus groups/Interviews Qualitative interviews

Qualitative interviews

Focus groups

Qualitative interviews

Ethnography/Interviews

Ethnography/Interviews

Individual narratives

Ethnography

Theoretical/Conceptual

Qualitative interviews

Ethnography

Review article

Grounded theory/ Interviews

17 female domestic violence shelter residents from a large US city 16 female domestic violence shelter residents in Cape Town, South Africa

47 women in Calcutta, India

59 Nicaraguan women

15 IPV-involved couples from Virginia

45 drug-involved women from New York City in violent relationships

45 drug-involved women from New York City in violent relationships

3 female IPV survivors in Albany, NY

32 women and 38 men in India

N/A

16 Scottish and English survivors of IPV (14 women, 2 men)

10 South African women

N/A

24 Lebanese women who had left IPV relationships

476   Valli Rajah and Meg Osborn

Definitions of Resistance Of the 29 articles, 11 provided explicit operational definitions of the term resistance and/ or its subcategories (Allen and Raghallaigh 2013; Crann and Barata 2016; Elizabeth 2003; Johnson  2006; Martin, Taft, and Resick  2007; Pain  2014a; Rajah  2006,  2007; Rosen et al. 2005; Sen 1999; van Schalkwyk, Boonzaier, and Gobodo-Madikizela 2014). Three papers did not formally operationalize the term, but, through context, suggested implicit definitions (Belknap 1999; Chantler 2006; Gondolf 2012). In 6 other articles, the word appeared closely coupled or conflated with terms like strategies (Cavanagh 2003; Cavanagh et al. 2001; Davis 2007; Hayes 2013) and agency (Campbell and Mannell 2016; Khoury and Webhi  2016), in ways sufficient to establish an implicit definition. (See Table 27.2 for quoted definitions drawn from the papers.) The remaining 9 papers did not define resistance (Belknap  2010; Faria  2017; Helsel  2015; Mills  2016; Pain  2014b; Panchanadeswaran et al. 2007; Pyles et al. 2012; Salazar, Goicolea, and Ohman 2016; Thomas, Joshi, and Sorenson 2014). Of the definitions available, most characterized resistance as a response to violence (Pain 2014a; Sen 1999) and/or the broader social order that facilitates power inequities and male control (Allen and Raghallaigh  2013; Crann and Barata  2016; Rajah 2006, 2007). Some authors distinguished between different subcategories of resistance: for example, verbal resistance versus physical resistance (Martin, Taft, and Resick  2007), covert resistance versus overt resistance (Hayes 2013), or incident resistance versus practice resistance (Sen 1999).

Descriptions of the Body/Embodiment While descriptions of individuals’ physical and emotional experiences of and reactions to violence were common throughout the sample of articles, references to embodiment and/or to “the body” as a specific concept were rare (Helsel 2015; Mills 2016; Pain 2014a; Rajah 2007). None of the articles provided explicit definitions of these terms. While surprising, this finding confirms the view that although the body and embodiment are central to the experience of violence, bodies are rarely theorized in interpersonal violence research (Spencer 2015). This finding underscores the need to unpack how IPV research represents and understands embodied experience. This finding, prompts a second question: How does this literature discuss and conceptualize the body in the context of resistance? The authors found that articles discussed the body in three broad ways, as (1) active; (2) dominated and/or injured; and (3) interactive and/or transformative. Articles were not mutually exclusive in terms of their focus; a single paper might touch on two or even all three of the themes. The meaning of each category and how they played out in the articles reviewed are discussed next. See Table 27.3 for a list of articles grouped by category.

The Body and Intimate Partner Violence   477

Table 27.2.  Definitions of Resistance Author(s)

Year

Explicit Definition

Implicit Definition

Allen and Raghallaigh

2013

“any attempt to imagine or establish a life based on respect and equality” (Wade, 1997)

—

Belknap

1999 —

“speaking and acting against domination”

Campbell and Mannell

2016

“the myriad of ways in which women counteract violent behaviour whilst remaining within their relationship”

Cavanagh

2003 —

Cavanagh et al. 2001

—

—

strategies employed by women “to counter men’s attempts to control them” strategies women “develop actively to resist men’s abuse and challenge imposed constructions of its meaning”

Chantler

2006 —

Crann and Barata

2016

— “women’s active capacity to oppose, avoid, and push back against the abuse and its negative effects, the abuser and abusive relationships, and the broader social environment that upholds social and cultural norms of violence against women”

Davis

2007

—

Elizabeth

2003 “Resistance, or agency, within the poststruc- — turalist framework that I am proposing here assumes a specific character . . . [I]n this article, agency is understood as active negotiation within shifting contexts of constraint”

Gondolf

2012

—

“attempts for survival and control within the relationship”

“In the face of IPV and economic hardship, women strategize their survival to remain free of violence and achieve economic security”

“women’s aggression in clinical samples tends to be ‘violent resistance’ against their male partner’s ‘intimate terrorism’ ” (Continued)

478   Valli Rajah and Meg Osborn

Table 27.2.  Definitions of Resistance  (Continued) Author(s)

Year

Explicit Definition

Implicit Definition

Hayes

2013

—

“women engage in certain behaviors throughout abusive relationships to show they are not passive and/or helpless”

Johnson

2006 “one can be violent and noncontrolling but in — a relationship with a violent and controlling partner”

Khoury and Webhi

2016

—

Martin, Taft, and Resick

2007

— “Verbal resistance includes avoidance, placating the perpetrator, and attempts to convince the perpetrator to cease martial rape. Victims who physically resist marital rape employ several different methods, such as running, covering or shielding themselves, and the use of violence through hitting, kicking, or pushing”

Pain

2014a “actions taken to counter or reduce violence” —

Rajah

2006 “the conscious effort to subvert or countermand patriarchal control and the symbolic meanings that support it”

Rajah

2007

Rosen et al.

— 2005 “Violent resistance (VR) is a pattern of resistance in which the victim, using nonviolent and violent acts, retaliates against a partner’s attempts to control”

Sen

“The study discussed in this article sought to specifically examine women’s decisions to leave an abusive relationship as an act of agency and resistance”

—

“nonconformist behaviour that questions the — legitimacy of a prevailing social order”

1999 “Where responses challenge the acts of — violence or the assumed right to use violence, I refer to resistance” — van Schalkwyk, 2014 “an active self-construction strategy” Boonzaier, and GobodoMadikizela

The Body and Intimate Partner Violence   479

Table 27.3.  Grouping of Articles by Category Article

Dominated

Active

Allen and Raghallaigh (2013)

X

X

Belknap (1999)

X

X

Belknap (2010)

X

X

Campbell and Mannell (2016)

X

X

Cavanagh (2003)

X

X

Transformative

X X

Cavanagh et al. (2001) Chantler (2006) Crann and Barata (2016)

X

X

X

X

X

Davis (2007) Elizabeth (2003)

X

Faria (2017)

X

Gondolf (2012)

X

Hayes (2013)

X X

Helsel (2015)

X

Johnson (2006)

X

Khoury and Webhi (2016)

X

Martin, Taft, and Resick (2007)

X

X

X

X

Panchanadeswaran et al. (2007)

X

X

Pyles et al. (2012)

X

X

Rajah (2006)

X

X

X

X X

Mills (2016) Pain (2014a)

X

Pain (2014b)

Rajah (2007)

X

X

Rosen et al. (2005)

X

X

Salazar, Goicolea, and Ohman (2016)

X

X

Sen (1999)

X

Thomas, Joshi, and Sorenson (2014)

X

van Schalkwyk, Boonzaier, and GobodoMadikizela (2014)

X

Total

20

X X 19

11

480   Valli Rajah and Meg Osborn

The Active Body The papers classified in this study as illustrating an “active body” (19 out of 29) describe a slate of ways in which women actively use their bodies to resist violence. These papers resemble a large body of scholarship on “everyday resistance,” a subfield of resistance studies (Johansson and Vinthagen 2016; McGee 2014). In varying levels of detail, these papers explored strategies employed by victims to minimize or mitigate the effects of their abuse. These included physically removing themselves from their abusers’ vicinities, adopting placating behaviors, initiating affectionate physical contact, pretending to be sick, and seeking formal assistance from the police (Allen and Raghallaigh  2013; Belknap 1999, 2010; Cavanagh 2003; Chantler 2006; Crann and Barata 2016; Davis 2007; Gondolf  2012; Hayes  2013; Johnson  2006; Martin, Taft, and Resick  2007; Mills  2016; Pain 2014a; Panchanadeswaran et al. 2007; Pyles et al. 2012; Rajah 2006, 2007; Rosen et al. 2005; Thomas, Joshi, and Sorenson 2014). Several articles mentioned abused women retaliating using physical violence (Cavanagh  2003; Chantler  2006; Gondolf  2012; Hayes 2013; Johnson 2006; Martin, Taft, and Resick 2007; Pain 2014a; Rajah 2006; Rosen et al. 2005). Some individuals framed these efforts as a way of “fighting back” or regaining control (Crann and Barata 2016), while others revealed a focus less on active opposition than on sheer survival (Crann and Barata 2016; Thomas, Joshi, and Sorenson 2014). Existing research, in other words, demonstrates interpretive complexity to embodied responses to violence, wherein the same acts can be seen as evidence of either victimhood or agency and resistance depending on the individual and the context. Cultural ideas about the body help to frame women’s conscious understanding of appropriate responses to violence. In particular, these ideas shape women’s ideas about when they need to exercise bodily discipline or defiance. For instance, an excerpt from Salazar, Goicolea, and Ohman (2016) explains that in Nicaragua it is commonly believed that men are unable to resist their own impulses and, therefore “women . . . are solely responsible for avoiding men’s sexual violence” (325). However, cultural expectations also instruct women about the circumstances in which embodied forms of resistance are not only acceptable but expected. For example, a young Mexican woman described learning from her mother “that you have to be quiet and obedient, but if he crosses the line you must put him in his place and say, ‘You are not going to punch me, you are not going to hit me, you are not going to offend me, to humiliate me’ ” (Belknap 2010, 884). When resistance is culturally sanctioned rather than forbidden or discouraged, women may be more inclined to take a physicalrole in asserting their agency against abusers. There is a nod to intersectional ideas in the papers grouped in this section. Culture provides a normative framework for resistance, but these ideas and women’s capacity to act on them may differ depending on women’s social location, such as whether or not they are working or if they are mothers. In one interesting example, women in Ethiopia reported male partners refusing to add their names to property deeds, cutting off access to money, and forbidding them to continue university studies (Allen and Raghallaigh

The Body and Intimate Partner Violence   481 2013). While many Western countries have social welfare programs that offer financial support to women, Ethiopia does not Here women’s physical needs for food and shelter contour their resistance. By casting women’s responses to violence in a social and cultural context, the papers in this section bring nuance to our understanding of embodied resistance. The papers in this section also tend to discuss women’s bodies in individualistic terms and view resistance as based on a conscious rational calculus about vulnerability and the necessity of change. By emphasizing cognition, these papers take a wide angle on resistance, which, in essence, challenges the victim–agency dichotomy. Like many other studies of everyday resistance, this work resonates with a dominant assumption derived from the ideas of Emmanuel Kant—namely, that power either operates on the level of ideas persuading the mind of its legitimacy or as a material force that directly coerces the body (Mitchell 1990). The subject of resistance in much of this work, accordingly, is an autonomous, conscious actor who is largely disembedded (i.e., abstracted from context) and disembodied (i.e., ignoring the incorporation of the social into the body) (Mitchell 1990). The papers grouped in the following two sections differently conceptualize the resistant body.

The Dominated/Injured Body Of the 29 articles reviewed, 20 discuss women’s resistance within the context of biology and an overall logic of health and illness. Specifically, the papers defined as “dominated/ injured” foreground the ways in which women’s agency is limited in the context of IPV either because cultural expectations constrain women’s embodied performances or because of the physical/psychological harms associated with violence (Allen and Ragallaigh  2013; Belknap  1999,  2010; Campbell and Mannell  2016; Cavanagh  2003; Crann and Barata 2016; Faria 2017; Gondolf 2012; Helsel 2015; Johnson 2006; Khoury and Webhi  2016; Martin, Taft, and Resick  2007; Pain  2014a; Panchanadeswaran et al. 2007; Pyles et al. 2012; Rajah 2006; Rosen et al. 2005; Salazar, Goicolea, and Ohman 2016; Thomas, Joshi, and Sorenson  2014; van Schalkwyk, Boonzaier, and GobodoMadikizela 2014). Generally, the papers in this section move away from conceptualizing women’s resistance as conscious, strategic action. In so doing, they offer new ways of understanding the body and resistance. Articles that fit the first theme regarding culture and embodied performances examine the ways in which women’s resistance is constrained by expectations of women as mothers and wives, which might include satisfying their husbands’ sexual needs (Allen and Raghallaigh  2013) and protecting their children from exposure to violence (Belknap 1999; van Schalkwyk, Boonzaier, and Gobodo-Madikizela 2014). Women in these contexts are specifically charged with preserving the harmony of the family sphere through silent acceptance and endurance; any physical demonstration of resistance is, therefore, viewed as disruptive and an indication that the victim has failed to meet gender

482   Valli Rajah and Meg Osborn expectations (Allen and Raghallaigh 2013; Campbell and Mannell 2016; Cavanagh 2003; Khouri and Webhi 2016; Rajah 2006). Although the sampled articles covered a wide variety of cultures and communities, each with its own distinct set of traditions, women’s experience of being constrained by expectations regarding gender norms was prevalent throughout the areas studied, including countries in North America, Latin America, Southeast Asia, and Africa. The specific expectations placed on women, however, varied depending on the cultural context. The articles, in other words, highlighted intersectional themes, suggesting that gender, race, class, and heterosexism all influence “the meaning and nature of domestic violence, how it is experienced by self and responded to by others, how personal and social consequences are represented, and how and whether escape and safety can be obtained” (Bograd 1999, 276). For example, several articles focusing on Latina women touched on the concept of marianismo, a feminine ideal that positions women as nurturing, passive, and self-sacrificing in their personalities and relationships with men rather than overtly oppositional (Rajah  2006; Salazar, Goicolea, and Ohman  2016). Participants from other cultures, such as women in a Lebanese sample, however, spoke little about gendered personality characteristics and focused primarily on the centrality of marriage and the stigma surrounding divorce (Khoury and Webhi 2016). Several of the articles that focus on the ways that culture constrains women’s embodied performances address how the very real risk of bodily harm to women and their family members both reinforces gender norms and impedes women’s resistance. For instance, participants in three of the studies explicitly called attention to the contrast between their own physical size and strength, and that of their abusers (Panchanadeswaran et al. 2007; Thomas, Joshi, and Sorenson 2014; van Schalkwyk, Boonzaier, and GobodoMadikizela 2014). The following article excerpt illustrates this point: “Altoise positions herself as a helpless victim who is vulnerable to intense physical domination at her partner’s hands. By focusing on his strength and capacity to exert power over her, she constructs herself as having limited power in relation to the abuser” (van Schalkwyk, Boonzaier, and Gobodo-Madikizela 2014, 321–322). The articles discussed in this section thus far tend to construct women as having internalized gender-appropriate ideas that guide their embodied practices. Some papers explicitly argue that women accept and embody patriarchal ideas about male superiority, which puts them at risk for victimization (Belknap 2010; Campbell and Mannell 2016; Crann and Barata 2016; Panchanadeswaran et al. 2007; Salazar, Goicolea, and Ohman 2016). In a focus group study of women in Ethiopia, for instance, one respondent described the effect of deeply entrenched ideas about male superiority and female submission; in her understanding, culturally sanctioned inequality “has been there for long, and it is still part of us. We females ourselves believed and accepted that we are under the male” (Allen and Raghallaigh 2013, 12). Another participant explicitly linked the normative devaluation of women to their physical attributes and reproductive capabilities. The papers grouped in this section, in other words, suggest that norms and bodily capacities together influence responses to IPV.

The Body and Intimate Partner Violence   483 In terms of their understanding of the body and resistance, many of the papers in this section reject the notion that women are knowing, willing, autonomous, and self-critical subjects of Kantian discourse to argue, instead, that women are the subjects of multiple power techniques and discourses, which women’s resistance aims to reverse (Johansson and Vinthagen 2016). Other articles in this section looked specifically at injury and the chronic physical and psychological health problems victims develop as a result of their abuse, including disrupted eating patterns, stomach ulcers, posttraumatic stress disorder (PTSD) symptoms, fatigue, depression, and self-harm, which serve as impediments to resistance (Crann and Barata 2016). By linking IPV to chronic health conditions, some papers suggest that women subject to violence must manage their own health but may lack agency because of their physical vulnerabilities. Some of the articles that relied on the logic of health focus on embodiment and provide a new perspective on the body and resistance. These articles construe the body as a site of knowledge and experience such that women learn and engage in gender-appropriate embodied dispositions without conscious thought (Fahs and Swank 2015, 150). They show, moreover, that “cultural ideas link particular physiological dispositions to members of particular social groups and individuals themselves embody and feel these linkages” (Fahs and Swank 2015, 150). Men’s harmful acts are perceived and responded to in this context. This perspective is illustrated by the following excerpt of one reviewed paper, “[T]hey are gonna try to knock you back down to make you feel like a female, and what I mean by female is what we have between our legs” (Thomas, Joshi, and Sorenson 2014, 24). The author of another paper describes the trauma survivor’s body as an “interpretable text” that silently communicates the person’s prior attempts to resist abuse (Helsel 2015, 692). Resonant with the ideas of Pierre Bourdieu, these papers foreground women’s embodiment, or the fact that how women act within and perceive the world is contoured by their violent victimization, which itself reinforces their position as women (Johansson and Vinthagen 2016). Taken together, the papers in this section highlight the ways in which women’s agency and resistance are stymied, but still show that, despite vulnerability, women can and do resist because they inhabit multiple, sometimes conflicting internalized ideas, discourses, or embodied dispositions, which variously inform resistant practices and how women understand and experience them.

The Interactive/Transformative Body The articles that were classified as “transformative” (11 out of 29) analyzed the ways in which women’s embodied responses and practices facilitate changes in their experiences of violence. Generally, the articles grouped in this section highlight the role of emotion in facilitating resistance. These articles, to varying degrees, draw upon the

484   Valli Rajah and Meg Osborn sociological assumption that emotional experience and the body is co-constitutive and relational. Specifically, people both experience and become aware of emotion in the context of specific (inter)corporeal interactions and act in relation to their own and others’ bodies and emotions (Boiger and Mesquita 2012; Laurendeau 2014). Some of the articles in this section, for instance, suggest that women make conscious choices to reach out to others to alter how they personally feel about their own actions (Crann and Barata  2016; Khouri and Webhi  2016). Women experience positive emotions when important others respond to their resistant acts in ways that are congruent with their self-perceptions and their personal views of how women should respond to violence (Boiger and Mesquita 2012). These emotions, in turn, propel women’s resistance. In the context of their bonds to others, in other words, emotions make resistance possible. Other articles suggest that when it comes to emotion and transformative resistance, cognition and emotion are linked. As explained by Pain (2014a, 132): “Fear in the moment of violence is a bodily experience, but quickly becomes a cognitive problem at the same time: panic has to be suppressed, as the mind is working fast to try to plan how to halt or minimise the damage of the incident.” Some of the articles in this section assume that, in the context of IPV, women balance and/or work through alternating feelings of fear and strength, in the context of which women may sometimes engage in resistance that helps change their situation. Another mechanism by which emotion facilitates transformative resistance is in the context of turning points and transitions within women’s relationships. Specifically, 6 papers described victims as experiencing “critical moments” or “moments of truth,” in which their understanding of their own circumstances shifts dramatically, or in which they become newly strengthened and mobilized to take action (Belknap  1999; Hayes  2013; Khouri and Webhi  2016; Pain  2014a; Pyles et al.  2012; van Schalkwyk, Boonzaier, and Gobodo-Madikizela 2014). Specifically, these moments often occur during particularly physically threatening and emotionally charged incidents of abuse (Khouri and Webhi 2016; Pain 2014a). In one article, a respondent recounted the aftermath of a physical attack that had left her with several broken bones in her throat; she equated the physical process of recovery, of literally getting her “voice back,” with feeling stronger and regaining her agency (Pyles et al. 2012). Another woman asserted that victims “are like sponges. We can only absorb so much abuse and then it starts to roll off ” (Belknap 1999, 401). In the context of this metaphor, which physicalizes the abuse as being taken in by the body, once a victim hits a certain saturation point, her feelings and sense of self change, which helps her develop the ability to rebuff further violence and engage in resistance. Finally, the articles grouped in this section also suggest how, in the context of resistance, feelings, thoughts, and actions build on each other. In some cases, articles suggest that emotions have an especially important role in triggering transformative thoughts and/ or actions. This is illustrated by the experience of one research participant: “I just suddenly thought I don’t have to put up with this. . . . I think I must have been subconsciously getting more and more angry that he wouldn’t let me out. . . . I think I just got so angry that the anger overrode being scared” (Pain 2014a, 140). In other instances,

The Body and Intimate Partner Violence   485 articles suggest that, in the context of physical violence, women cognitively worked to manage their emotions, often juggling conflicting gender norms regarding what are appropriate emotional displays for women who occupy roles not only as wives but also as mothers and daughters. In the latter instance, analyses gesture toward the intersectional complexity of women’s attempts to manage their emotions in the context of IPV. Taken together, the papers in this section provide nuance to our understanding of embodied experience and resistance to IPV by focusing on emotion. These papers again challenge the victim–agency dichotomy by showing that, even in the midst of transformation, women’s feelings of being dominated don’t disappear. In addition, the papers show that, in the context of complex feelings, women may consciously turn to important others to alter their emotions, which may make resistance possible. Finally, rather than focusing on cultural or social context, the papers in this section direct our attention to some of the processes involved in responses to violence wherein physical and emotional experience are foundational to women’s understanding of and responses to IPV. The next section considers a third question: What can we learn through a deeper analysis of embodied resistance in the context of IPV?

Conclusion Historically, research offered contrasting perspectives on women’s capacity for resistance in the context of IPV. Scholarship has evolved to show that women can and do resist IPV in numerous ways for diverse reasons. Recognizing that power relations in intimate relationships are dynamic and unstable, researchers have worked to empirically demonstrate the nuance and complexity of how women live with and resist violence. An important addition to this work is an examination of the body and embodiment in the context of IPV. Critical victimologists, the authors of the present work included, recognize that bodies are often undertheorized in violence research (Spencer  2015). Understanding the role of the body and embodiment in the context of IPV is important for academic and practical reasons. For the most part, current IPV research does not directly focus on the body and embodiment; over half the articles we identified did not mention the body at all, and those that did left embodiment undefined and undertheorized. However, this analysis shows that, when it does appear, the body and embodied processes provide an empirical grounding that helps to complicate our often binary assessment of women involved in situations of IPV as either agents or victims. Generally, the papers analyzed in this study suggest that cultural expectations about gender-appropriate behavior shape women’s responses to violence across a range of contexts in ways that create both opportunities for and obstacles to resistance. Our focus on the body fleshed this idea out by showing how, in their everyday lives, women can embody contradictory imperatives, which show them to habitually and unconsciously submit to patriarchal constraints even while simultaneously demonstrating a disposition to physically endure violence and put their

486   Valli Rajah and Meg Osborn bodies on the line to protect the things that matter to them including, most notably, their children. A focus on the body also demonstrates how different social locations contour resistance and the ways in which women embody and use their bodies as they navigate contradictory gender ideals. Finally, women’s resistance takes on ambiguous forms because women’s power relationships are often intricately entwined with their relationships to others, including to family. A focus on the body shows that women’s actions in the context of IPV are felt, experienced, and given meaning in interactions with others. At the conclusion of this chapter, we have a greater appreciation for how the body figures in research on resistance to IPV. It is worth noting that the authors’ research is limited by its exclusive focus on male violence toward women in heterosexual relationships. The authors hope that future research fills this gap and works toward greater conceptual clarity in two areas: the role of emotions in resistance and how physical action and emotion inform how women understand their own responses to violence. Additionally, future work should look more specifically at how the body figures in different types of resistance identified in existing research—such as overt, covert, symbolic, and political resistance. There are also practical reasons to unpack and further explore the role of the body in the context of resistance to IPV. Directing attention to and refining our understanding of how the body is implicated in the context of IPV has implications for institutional responses to victimized women. In both medical and criminal justice settings, women’s embodied experiences are consequential to the positive and negative sanctions they endure. Within medical contexts, women who suffer IPV are often subject to paternalistic discourses that manage and represent the female body in ways that either contradict or don’t fully capture women’s experiences (Sweet 2014). A nuanced approach to the body may influence how women are treated in medical contexts, which, in turn, may alter how women experience and interpret their victimization (Sweet 2014). In addition, developing an embodied perspective is consequential for criminal justice responses to IPV. Policy interventions such as laws that mandate state involvement in cases of domestic violence are based on the assumption that “victims,” who have a limited capacity for agency, require state intervention to manage IPV (Hoyle 1998). When making arrests and determining who constitutes a “victim,” police officers examine several factors including two that directly pertain to the body: the comparative extent of any injuries inflicted by and between intimate partners; and if either party acted defensively to protect himself or herself from injury (Rajah 2007). These laws are criticized for having a disproportionately negative impact on socially marginalized women (Rajah 2007). A nuanced approach to the body, which recognizes the intersectional and relational factors that shape embodied responses to IPV, may help contribute to more equitable criminal justice outcomes.

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Index

Note: Tables and figures are indicated by an italic “t” and “f ”, respectively, following the page number. “absent presence,” body as  1, 38 Abu-Lughod, Lila  56 Academic Search Premier (ASP)  277 active body, and intimate partner violence 480–481 actor network theory  62 aesthetic labor (of ethnographers)  327–342 blending in vs. sticking out  328, 334, 337, 338–339, 341–342 comparative case study method  328, 331 data analysis  333–334 ethnography in a clothing store  332–333 ethnography in the gym  331–332 defined 327 doing research as a client  332, 335–340 findings aesthetic labor in the clothing store 338–341 aesthetic labor in the gym  334–338 gaining access to research sites  334 Hochschild’s “emotional labor” and  247–249, 328–329, 331, 340, 342 inequality, embodiment, and  328–330 literary gaps in research  329–330 Mears and  330 Pascoe and  330 relation of Bourdieu’s capital, habitus, inequality theory  329 Rivera and  330 Warhurst’s naming of  328–329 Williams and Connell on  329 Witz/Warhurst/Nickson’s study  329 Africa intimate partner violence and  473, 475t, 482 Linneaus’s characterization of people  149 migrations to Brazil  311

use/dangers of skin lightening  274, 279, 284 use of skin whiteners  275 ageism. See also aging confounding influence on researchers  184 defined 183 embodiment, healthism, and  187–190 gendered body ideals and  184–185 male/female body dissatisfaction  185 stereotyping  183–185, 190 workplace discrimination and  183 agency binary sex and  203 black political agency  301 breast cancer and  221 critical care units (CCUs) and  370, 374 defined 470 diabetes patients and  416 of DIY artificial pancreas users  17, 416, 418–419, 421–422, 425 femininity, masculinity, and  190 of intersectionality  23 Lefebvre’s spatial triad and  363–354 sensing race and  56, 65 skin lightening products and  278 use of hands by police and  452 of women/intimate partner violence  470–471, 476, 477t, 480–481, 483–485 aging. See also ageism death and  12–13 future research directions  191 gender and  183–191 medicalization of  189 physical activity and  186, 189 physical attractiveness and  184–185, 187 sexual/sexuality orientation issues  184–186 successful aging  189–190 women’s attitudes to cosmetic surgery  72–73

492   index aging and death  12–13 Aisling, Ann O’Kane  423 Allison, Michelle  130 American Beauty study (on history of American aesthetics) (Banner)  146–147, 151, 154, 160, 161n1 American College of Medical Genetics (ACMG)  383, 391 American Diabetes Association, Scientific Sessions 415 American Journal of Kidney Diseases 274 American Medical Association (AMA)  383, 385, 387–388, 390–391 American Public Health Association (APHA) conference 129 American Society of Human Genetics (ASHG) 383 American Sociological Association (ASA)  24 Americas, views on nonbinary sex/ gender 202 Angell, Marcia  381 Anglo-Saxon American women. See also German women; Irish/Celtic Irish women Banner’s research findings  147 fatness and attractiveness  156 fatness and social class  146–147 fatness as sign of beauty  159 fatness as sign of good health  154–156 Prichard’s description of  150 as “pure” white group  149–150 research findings  153–155 research methods  152 as “robust”/fair-skinned  150 “Animal, Mechanical, and Me: The Search for Replaceable Hearts” study  164–179. See also organ transplantation anorexia and bulimia  107, 108, 109, 114 Aoki, Julia  63–64 Aphramor, Lucy  132, 139n5 archival studies limitations of  32 in mixed research method  34 Arizona v. Johnson, Â 000 US 07–1122 [2009] 452 Arksey, Hilary  471–472 Armstrong, Elizabeth A.  330

Arseniev-Koehler, Alina  116 artificial pancreas  168, 413–427 accuracy obstacles  420 BioStator, closed-loop system  419–421, 421f development of continuous glucose monitoring sensor (CGMS)  420 FDA guidelines  416, 423–425 Kadish/pump concept  419 MiniMed 670G, hybrid closed-looped system  413–416, 415f, 427n5, 427n9 Open Artificial Pancreas System  422–424 TEDMED, live-streamed panel  422 artificial pancreas in cyborg bodies  413–427 Asia, use of skin whiteners  275 Association for Health Enrichment of Large People (AHELP)  122f, 125–126, 126f Association for Size Diversity and Health (ASDAH)  112, 122f, 124–127, 126f, 129, 131–133, 137 ATLAST.ti, video analysis software  95 autoethnographic methods  15, 17, 26. See also Lyme disease (contesting Lyme disease) incorporation into ethnography  31–32 Lyme disease study (example)  431–443 strong intersectionality potential in  31 Bacon, Linda  132, 139n5 Bakhtin, Mikhail  363 Balogun, Oluwakemi M.  310–311 Banner, Lois, American Beauty study  146–147, 151, 154, 160, 161n1 Barber, Kristen  14 beauty consumption by men  239–252 Adonis/The Executive (high-service salons) 240–253 Brod on  243–244 client profile  243 The Executive (high-service salon)  240–253 gay men  244, 249, 251 heterosexual men  239, 241, 243–246, 248–252 influence of racial segregation  240 Kang’s research on high-service consumers 239–240

index   493 labor of consumption by women  243–252 caring for men  247–249 introducing men to beauty  243–247 pampering men  249–252 types of services  239–240 Beddoe, John  150 Bell, Susan  379 belly effect (embodied reflexivity)  40–41 Berg, Francie  127 Bettie, Julie  26–27 Beynon, Erdman  298 Beyond HAES organization  131 binary sex (gender ideology)  13. See also cisgender members; transgender people Americas (Native nations) and  207 ancient Greece and  201 case studies  207–215 Baily 211–213 Cam 208–209 Nora 213–215 Zeta 209–211 Christianity and  201–204 cis men  204, 206, 209–211, 214, 221–222, 225, 229–232, 233n2 cis women  211–212, 214, 216–217n11 constructivist theories on  200, 210 discrimination against cisgender members 206 essentialist theories on  199–201, 210, 212, 215–216 European colonialism and  199, 201–203, 216 gender transition  200–204, 206–210, 212–215, 216n7, 217n15 genital sex variant births  205 historical background  200–203 India/Bangladesh/Pakistan and  203 infant sex-reassignment surgeries  205, 206 intersex advocacy  205, 213–214 intersex children  202, 205, 212–213 intersex statuses  199, 203–205, 215, 216n1 intersexuality and  205, 210, 212, 213 Judaism and  201 Judeo-Christian tradition and  201 LGBT conversion therapies  204–205 Middle Ages and  201, 203

modifiable bodies and  14 nonbinary sex/gender understandings  200–207, 215–216 Polynesian societies and  202–203 Pope Francis on  203–204 same-gender marriage  204 sex change clinics and  204 skin lightening and  283–284 South Asia and  207 Sulik on  222 transitions  200–204, 206–210, 212–215, 216n7, 217n15 biohistories of cyborg technologies  417–419 biohistories, description  417–418 Foucault/“The Birth of Social Medicine,” 417 Haraway/concept of the cyborg  417 patient agency and  418–419, 421–422, 425–426 biology-informed scholarship, on race  310 biomedical model of health care  13, 362, 374 bio-prosthetic heart valves  167 BioStator, closed-loop system (artificial pancreas)  419–421, 421f Bird, Sharon  248 Black, Paula  247 Black authenticity as an achieved identity  298–200 civil rights era and  298–300 defined 298 embodied performance against police brutality 302 figurative violence and  299 Malcolm X, Nation of Islam, and  299–300 organizations associated with  299 rejection of Jim Crow customs, institutions 300 Black feminist activists  23 Black Lives Matter movement  452 Black Panther Party (BPP) civil rights and  300–306 “8 Points of Attention” (rules of conduct) 301 FBI’s actions against  303–304 formation of  300 Hoover’s denunciation of  303 Newton/Seal’s role in forming  300–302

494   index Black Panther Party (BPP) (Continued) non-violent mission of  301 People’s Free Medical Clinics  304–306 practice of figurative violence  295, 300–306 Ramparts literary magazine  302 self-defense projects  305 Black protests  295–303 Black social movements  295 Black women Linneaus’s characterization of  149 literary characterizations of  28 Boas, Franz  310 bodily capital personal trainers’ physiques as  331, 334, 337 Wacquant’s discussion of  379 body image ageism, gender, and  183–187 eating disorders and  131 future research directions  191 older women and  187 race and  186, 191 sexual orientation and  185–186 study of Senegalese adults  186 body mass index (BMI)  105–106, 113, 134 body of the researcher as multiply situated  8 processes undergone by  53–54 roles processes undergone by  53–54, 62 Body & Society journal  1 Bordo, Susan  22, 239 Bourdieu, Pierre on the body  2, 3 on embodiment  22 field analysis concept  112 on taste 3 theory of habitus feeding and fasting bodies  258, 261, 264, 267, 269 relation to aesthetic labor  329 search and seizure and  450 Brazil flexible racial boundaries  309 importance of boa aparência (appearance) and discrimination  312, 320–321 inequalities between darker-lighter Brazilians 259 phenotypically diverse demographics  311

racial democracy ideology (Freyre)  311–312, 316, 321–322, 324n1 racial mixing history  315–316 relationship between race, mestiçagem (race mixing), nationality  311, 316, 318, 322 Brazil and United States, race, phenotype, nationality, Governador Valadares (GV) (study location)  312–324 research data and methods  312–315 description 312–313 participant recruitment  315 returning migrant sample profile  313–315, 314f research findings  315–321 Brazilians’ pardo/moreno categories self-classification 315–316 importance of boa aparência (appearance) and discrimination 320–321 phenotype/nationality assumptions 317–319 research findings  315–321 Brazilian Blowout (hair straightening)  312 Brazilian Butt Lift (self-explanatory!)  312 breast cancer. See also breast cancer in men Broom’s understanding of  223 Clarke, Adele, on  222 Clarke, Juanne, on  232 culture of  222–224 data on diagnosed cases  221 Ericksen’s interview study of women  223 female vs. male rates  221 Internet/media and  224 as locus of biopolitical activism  221–223, 229 normative femininity narratives  222–223 Pott’s studies of writings of women with 223 Sulik on  222 in transgender people  221–222, 225–227, 230–232, 233–234n5, 233n2 in women  221–223, 225, 227–232, 233n1, 233n4 breast cancer in men alternative cancer care possibilities 232–233 celebrity survivors  225–226, 228–229, 231

index   495 Criss, Peter  225–226, 231–232 Roundtree, Richard  225–226, 228–229, 231 challenges in believing in  222 Fenway Health on risk factors  221–222 hegemonic masculinity and  224–231 hormone therapy and  233–234n5 Pelkey on  229–230 research findings  227–231 claiming/asserting masculinity  229–231 discursive distance from hegemonic masculinity 231–232 embodied gender disruption  228–229 research methods  225–227 risk factors  221–222 British East India Company  64 Brod, Harry  243–244 Broom, Dorothy  223 Brown, Michael  452 Brownell, Kelly  139n2 Bucher, Rue  136 bulimia  107, 108, 109, 114 Bundchen, Giselle  312 Burgard, Deb  126 Cairns, Kate  259–260 Caracelli, Valerie J.  75 Caribbean, use of skin whiteners  275 Carlyle, Thomas  150 carnal sociology  6, 53–54 Carrigan, T. R.  224 Casanova, Erynn Masi de  29–30 Casper, Monica  71 Casper, Monica J.  233 celebrity evolutionary psychology  200 Celtic Irish, characterization as “Africanoid” race  147, 150 Center for Consumer Freedom  112 Center for Devices and Radiological Health (FDA) 414 Centers for Disease Control and Prevention (CDC)  73, 112 on Lyme disease  432, 438, 443 Lyme disease estimates, U.S. (2017)  431 recognition of Fat-OK study  112–113 Charmaz, Kathy  400 children BPP’s free breakfast programs  304

family management issues  45 fatherhood parenting classes and  43–44 infant sex-reassignment surgeries  205, 206 intersex children  202, 205, 212–213 management of risk factors  405–410 Nation of Islam and  298 parental responsibilities for  41, 398, 400–404 pregnant embodiment and  41, 43–49 vaccinations and  16, 399–400 China, beauty cultures in  259 Cho, Sumi  21 Chou, Wen-Ying Sylvia  88–89 Christianity binary sex (gender ideology) and  201–204 Christian diets  260 chronic fatigue syndrome  433, 438, 439 cisgender members breast cancer and  222 cisgender fathers  42 cisgender HAES members  133 cis men  204, 206, 209–211, 214, 221–222, 225, 229–232, 233n2 cis women  211–212, 214, 216–217n11 medical interventions  206 civil rights era Black authenticity and  298–300 Black nationalist groups  298 Malcolm X and  299–300, 302 post-civil rights era political/cultural landscape  298–300 racial equality  298–300 urban renewal strategies  300–301 Vietnam War  300 Voting Rights Act (1965)  300 Clark, Plano  77 Clarke, Adele  222 Clarke, Juanne  232 Cochrane, Marie  39–40 coding of data artificial pancreas studies  426 Brazil/U.S., race, phenotype, nationality 313 critical care units (CCUs)  364 news media, fatness/obesity articles  110–111, 116 qualitative data  81

496   index coding of data (Continued) skin lightening products  278 YouTube vlogs, illness narratives  11, 90, 95–100, 97f Coffey, Amanda  414 COINTELPRO counterintelligence programs (FBI) 303–304 Collins, Francis  380, 388 Collins, Patricia Hill  4, 25, 39 comparative case, study method  328, 331 conceived space  362–364, 368–371, 373–375 concept cards, use of, in interviews  30–31 Connell, Catherine  223–224, 329 Connell, R. W.  223, 224 constructivist grounded theory (Charmaz) 400 constructivist theories, on binary sex  200, 210 consumption. See labor of consumption by women, men’s grooming industry contesting new markets for bodily knowledge 379–395 convergent design mixed method  71–72 Cooley, Charles  310 Cooper, Brittney  23 Cooper, Charlotte  126, 127, 130–131, 134, 139n4 Crenshaw, Kimberlé. See also intersectionality cautions related to intersectionality  23 “Demarginalizing the Intersection of Race and Sex,”  25 on intersectionality  7, 21–22 Creswell, John W.  71, 77 criminal violence  288 CRISPR-Cas9, genetic modifications  178n1 Criss, Peter  225–226, 231–232 critical care units (CCUs). See embodied spatial practices, critical care units (CCUs) Cronin, James M.  260 cubital tunnel syndrome  342 Cushing’s syndrome  275 cyborg technologies  413–422. See also ­artificial pancreas; diabetes biohistories of  417–419 body as separate from device vs. one hybrid system  417–418 cyborg theory, requirements of  417 Dalibert/on somatechnology  418

description 417 diabetic biomedicine and  413–416 do-it-yourself pancreas (DIYPS) movement  416, 419, 422–426 Glooko, software  426 Haraway on  417, 426 insulin infusion pumps  414, 416, 420f, 425 MAKE magazine  422–423 MiniMed 670G, artificial pancreas  413–416, 415f, 427n5, 427n9 Nettleton’s questions about  416 OpenAPS blog  422 Oudshoorn/implantable cardiac defibrillator 417–418 patient agency and  418–419, 421–422, 425–426 patient rejection of mechanical devices  175 DADS program (responsible fatherhood programs)  10, 37, 42–46 Dagousset, Christine  273 Dalibert, Lucie  418 dance, intersectionality/masculine ­embodiment study  32–35 Darwinian reproduction imperative  200 Davis, Georgia  432 de Certeau, Michel  363 decision making in breast cancer  223 collaborative decision making  370–371 diabetes/insulin pump and  421 labor of consumption in men’s grooming and 243–244 medical governmentality and  431–432, 442 motherhood and  400 by police  464 “Demarginalizing the Intersection of Race and Sex” (Crenshaw)  25 devotional diets  260 diabetes. See also artificial pancreas; cyborg technologies challenges of management  413 HAES and  128 insulin infusion pumps  414, 416, 420f, 425 insulin pumps usage data  421–422 OpenAPS blog  422

index   497 patient-devised DIY artificial ­pancreases  416, 419, 422–425 porcine islets xenotransplantation  168 potential consequences of  413 pregnant embodiment and  49 Diabetes Control and Complication Trial (1993) 421 Diani, Mario  136 diethylstilbestrol (DES), health risks  379 dieting. See also fatness (obesity); feeding and fasting bodies; food body acceptance and  126 Christian diets/devotional diets  260 HAES on  131, 137 Indian women/feeding and fasting bodies 257–270 older gay men and  186 older women and  189–190 religious fasting  14, 258–263, 267–268, 270 weight loss vs. heath  135t Dijk, Teun A. van  152 Dill, Thornton  27, 31 direct-to-consumer (DTC) genetic testing study (genetic risk as bodily knowledge) 379–395 cholesterol/HIV/pregnancy tests ­comparison  382, 385, 393 claims of DTC companies  379 Collins/vision of “personalized medicine,” 380 companies offering “spit kits,”  380 Navigenics  380, 383, 389–391, 394n3 23andMe  89, 380, 383, 389–391, 394nn2–3, 395n7 comparison to home pregnancy/home HIV tests  382 historical background  379–380 medical markets  381–382, 393 Moore on  386 response of scientific/medical experts  384–395 on complexity of genetic information 384–387 on motivation for testing  387–390 on protections for the public  390–393 on scientific validity/clinical utility  385 study methods, data sources  382–384

Zelizer/focus on relational work between groups  381–382, 393 direct-to-consumer genetic testing study 379–395 disabled bodies, social regulation of  3 disorderliness of identity  22 disorder of sex development (DSD)  206 do-it-yourself pancreas (DIYPS) ­movement  416, 419, 422–425 dominated/injured body, and intimate partner violence  481–483 Douglas, Mary  174–175 dramaturgical codes, YouTube vlogs, illness narratives 97 DuBois, W. E. B.  310 eating disorders  107, 108, 109, 114, 131 Edwards, Mary  389 “8 Points of Attention” (rules of conduct) (Black Panther Party)  301 Elias, Norbert  2 Elias, Sean  148–149, 160 embodied health social movement  122, 127–130, 133, 138. See also Health at Every Size (HAES) movement embodied reflexivity described  37, 39–40, 49–50 embodied intersubjectivity and  39 feminist standpoint theories and  40 influence of status group memberships 43 pregnancy and  40–41 qualitative research and  39 embodied sociology  14–18 bodies and institutions  16 bodies and labor  15–16 bodies and medicine  16–17 bodies and states  15 bodies and violence  17–18 embodied spatial practices, critical care units (CCUs) 361–378 Bakhtin/Foucault/de Certeau/Nietzsche on 363 focus in critical care units (CCUs) conceived space  368–372 nurse’s lived experience of rounds  366–368, 373

498   index embodied spatial practices... (Continued) patient disruption of physician’s spatial practices  368–370, 374 tactical use of bodies  370–372 health care, disembodied biomedical model  13, 362, 374 health care delivery and  361–362 importance of spatial location  296 Lefebvre/social production of space theory conceived space  362–364, 368–375 gestural systems  363 “illusion of transparency”/“realistic illusion,” 365 lived space  362–364, 366–375 perceived space  362–364, 366, 373, 375 “male space,”  367–368 meaning making by human body  361 research methodology  364–372 data analysis  364–365 participant selection  364 “thick description” narrative vignettes  364, 365–372 resistance by patients  372, 373 sensing heritage and  62 social problems/spatially concentrated areas 300 tactical use of bodies  370–372 emotional labor concept (Hochschild)  247–249, 328–329, 331, 340, 342 Engels, Friedrich  1–3 England, Paula  78–80 use of mixed research methods  78–80 Epstein, Steven  106, 112 Ericken, Julia A.  223 essentialist theories, on binary sex  199–201, 210, 212, 215–216 ethnographic studies  9–10. See also specific studies autoethnographic methods  15, 17, 26 Barber’s use of  14 carnal sociology and  6 “crisis of representation” debates  364 description 10 favoring by sociologists  10 goal of  66 important of the senses  53 incorporation of autoethnography in  31–32 limitations of  32

locational anchoring of  26 multisited ethnographies  71 Pink on sensory approaches  54 as qualitative approach  9–10 sensing gender, sensory encounter  59–62 sensing heritage, sensory encounter  62–65 sensing race, sensory encounter  56–59 sensing/sensed bodies in  10 sensory encounters sensing gender  59–62 sensing heritage  62–65 sensing race  56–59 Wacquant/enactive ethnography notion  62 Wacquant’s focus on  6, 53–54 Eugenics movement  287 European Journal of Human Genetics (EJHG)  383, 391–392 European Society of Human Genetics (ESHG)  383, 388–390 Europe/European Union colonialism and binary sex (gender ideology) 201–202 use of skin lightening products  274–277, 279, 284–287 use of skin whitening products  275 Evans, James  391–392 explanatory sequential mixed method  71–72 exploratory sequential mixed method  71 Facebook  102, 127, 348, 358–359, 440 face-to-face interviews  3, 8, 10–11, 75, 82n2, 96, 248–249, 348, 449 face-to-face qualitative studies  10. See also ethnographic studies; in-depth interviewing “Falling in Love. A Bundle of Other People’s Experiences” (Godey’s Lady’s Book) 153 “Fanny McDermot” (Godey’s Lady’s Book) 145 Farrakhan, Louis  293 Farrell, Amy  123 fasting. See feeding and fasting bodies fat acceptance movement  105–106, 129–130, 133 fat activism  121–123, 126f, 130–136. See also Health at Every Size (HAES) movement

index   499 fathers impact of intersecting identity  33 marginalization of  38 pregnant embodiment studies and  38, 42–49 responsible fatherhood programs (DADS)  10, 37, 42–43, 45–46, 49–50 fathers and pregnant embodiment studies  38, 42–49 “active positioning” social status  43 “bonding ploys”/“You know what I mean” responses from interviewees  42 DADS program  10, 37–38, 42–46 negotiating insider/outsider status  43–46 responsible fatherhood programs  37, 38, 42–46 fatness (obesity). See also fatness (obesity), as a floating signifier of race; femininity and fatness; Health at Every Size (HAES) movement; overweight body research anorexia, bulimia, and  107, 108, 109, 114 body mass index (BMI) and  105–106, 113, 134 body size and  12 demographic groups  111 discrimination against  105–106 DTC genetic testing and  380 Epstein on  106, 112 ethnic/racial minorities and  28, 150, 288 fat acceptance movement  105–106, 129–130, 133 fat activism  121–123, 126f, 130–136 Fat-OK study, Eating-to-Death study  109, 111, 113–114 fat politics  124–125, 128–133, 136, 138 framing research methods  12, 73, 106–115 experiments 111–112 formal interviews  108 framing contests  107 HAES methods  112–113 news media coding  110–111 news media sampling  108–109 research findings  112–116 as grotesque  156–159 International Obesity Taskforce  105–106 media’s role in shaping attitudes  105–116 news media reports on  106

“obesity epidemic,”  12, 106, 112–113, 115, 121, 123, 129, 132 obesity issues, JAMA  109, 113 Othered men and  156 promoting claims about dangers of  112–113 research funding challenges  106 as a sign of beauty  153–154 as a sign of health  155–156 social construction of obesity epidemic 139n3 sociocultural factors  110 sources for analysis of “fat field,”  112 U.S. epidemic 12 “war on obesity,”  113 fatness (obesity), as a floating signifier of race 145–161 analysis 152–159 fat as a sign of beauty  153–154 fat as a sign of health  155–156 fat as grotesque  156–159 archival research methods  151–152 Fat Shame (Farrell)  123 The Fat Studies Reader (ed. Rothblum and Solovay) 123 Fausto-Sterling, Anne on second-wave feminists addressing the body 3–4 FBI (Federal Bureau of Investigation) COINTELPRO programs  303–304 Ghetto Informant Program (GIP)  304 Feagin, Joe  148–149, 160 Federal Trade Commission (FTC)  392 feeding and fasting bodies  257–270. See also dieting; food Bourdieu/theory of habitus  258, 261, 264, 267, 269 Canadian women  259–260 consumerist vs. religious aspects  260–261 dieting/dieting bodies  258–267 embedded approach methodology  262–263 fasting bodies  267–269 India/modern women  258–270 body and food preparation  261 case studies, profiles  264–267 desire to “look good”/“feel good,”  256, 264–265 lower middle class  262–264, 267–269 new middle class  262–268

500   index feeding and fasting bodies (Continued) privileged class  263–266, 269–270 religious fasting  14, 258–263, 267–268, 270 rules of engagement for eating  261 spiritual benefits  260–261 working class  259, 262–263, 266–269 naturalization argument on dieting  266 self-starvation practices  261–262, 267 theoretical model of food femininities  258 women’s supposed negative relationship to food 257–258 femininity Connell/Schippers on  223 food femininities  257–261, 270 hegemonic femininity  223–224, 336 normative femininity  222 older adults body management practices 190 smells related to  60 femininity and fatness Banner’s American Beauty study  146–147, 151, 154, 160, 161n1 Godey’s Lady’s Book excerpts  145 social class and  146–147, 151, 153–154, 161n feminists (feminist theory) body-aware work  4 critiques on the medicalization of pregnancy 22 gender-based focus  2 gender essentialists  200 Hemmings/political grammar of feminist theory 278 introduction of “intersectionality,”  22 perspective on intimate partner violence 470 postcolonial vs. mainstream Western feminists 4 social constructionist model of gender  4 social scientists body-aware work  4 standpoint theory  6, 39 trans-exclusionary radical feminists  200, 212, 214, 217n12 Fenway Health  221–222, 226 field research (field researchers) characteristics of field researchers  38–39 “doing” gender and pregnancy in  46–49 pregnant embodiment and  37–50

Fields, Jessica  31–32 figurative violence  15, 291–307, 293–307. See also intimate partner violence Black Panther Party’s practice of  295, 300–306 defined 294 Detroit-based Black nationalist groups  298 embodied performance and  294–295 Ku Klux Klan  294, 304 neo-Nazis 294 racial equality activism and  295, 298 rejection of Jim Crow customs, racist institutions 299–300 sample contingency table  297t social movements and  294–297, 306 white supremacists  294–295, 304, 422 Floyd v. City of New York (2013)  450 fluoroquinolone (FQ) toxicity, illness narratives  89–95, 99, 102n1 focus groups description 76 organ transplantation studies  166–167, 170–175, 177, 178n2 food. See also dieting; fatness (obesity); feeding and fasting bodies black people and  149 dieting/dieting bodies  258–267 fasting bodies and  267–269 food femininities  257–261, 270 food industry warning labels  74–75 as a gendered, social institution  257 HAES/fat acceptance movements and  129–130, 139n2 Kwan/food industry lobbyists  106 in low-income minority neighborhoods 110 obesity/food policy books  123 parenting challenges  45, 50 plump/voluptuous people and  145–146, 157–158 reduced consumption/body modification 14 women’s negative relationship with 257–258 Food and Drug Administration (FDA) approval for MiniMed 670G  413–414 fluoroquinolones, black-box warnings  90, 102n1

index   501 genetic testing regulation  392 guidelines for DIY artificial ­pancreases  416, 423–425 hydroquinone regulations  284 Foucault, Michel  363 “The Birth of Social Medicine,”  417 on the body  294 on embodiment  22 Fourth Amendment lawsuits  450, 452 framing coding/cinematic framing  97–98 ethnographic research  66 of fatness, methods  12, 73, 106–115 experiments 111–112 formal interviews  108 “framing contests,”  106 HAES movement  122–123 news media coding  110–111 news media sampling  108–109 research findings  112–115 “framing contests” over fatness  106 Goffman’s development of  106 influence on shaping of attitudes  107 interviews and  107 Kwan/framing contests  106 methodologies 107 Frederick, David  107–108 Freyre, Gilberto  311–312, 316, 321–322, 324n1. See also racial democracy ideology (Freyre) Frost, S. Annie  153 Garland-Thomson, Rosemarie  6 gay men Asian men  71 binary sex, case study  211 body dissatisfaction of  186 conflated vanity of  244 fat gay men research  71 gay liberation movement (1970s)  201 identity labeling issues  211 sports as a “closet” for  251 stereotypical femininity of  338 women’s emotional labor and  249 gender. See also cisgender members; gay men; lesbians; men (males); transgender people; women (females) aging and  183–191

Balogun/Hoang’s research findings  310–311 body privilege and  154 fat phobia and  146 feminist social constructionist model  4 sensing gender, sensory experience  59–62 gender essentialists  200 gender nonconforming bodies  3 gender reassignment surgery (GRS)  209–210 gender theory  203–204 gender transitions  206–210, 212–215, 217n15 case studies  208–209, 213–215 Christianity/Nashville Statement on  204 framing as a disorder  203–204 mythic stories about  201 opposition to social acceptance of  204 Peterson’s refusal to recognize  200 Western medical transition paradigm  206, 216n7 Genetics in Medicine magazine  386 genetic testing (direct-to-consumer) study. See direct-to-consumer (DTC) genetic testing study (genetic risk as bodily knowledge) genital sex variant births  205 German women. See also Anglo-Saxon American women; Irish/Celtic Irish women Banner’s research findings  147, 151 Beddoe’s description of  150 Irish/Celtic comparison  147, 149–150, 152 research findings  153 research methods  151–152 as superior “pure” white group  149–150 gestures bodily gestures  10, 56 coding for gestures  98 cultural gestures  26 figurative violence and  294 gestural systems (Lefebvre)  363 ideology transmission with  363 nonverbal gestures  366 overcoming language barriers and  356–357 suspicious gestures  453 use of by spinal cord stimulation users  418 work-related gestures  362 Gill, Rosalind  224 Gingras, Jacqui  127, 134 girdle checks  3

502   index Glenn, Evelyn Nakano  28–29, 276 global cities literature. See Singapore and Dubai, low-wage male migrant labor Glooko, glucose-insulin software  426 Godey’s Lady’s Book connections between Irishness, barbarism, fatness 157 description of fat as a sign of health  155 description of plump Irish maid  158 “Falling in Love. A Bundle of Other People’s Experiences,”  153 “Fanny McDermot,”  145 “Kate Leonard’s Great Match,”  153 key word searches: “German AND plump”/“Irish AND plump,”  151 praise of curvaceous German women  154 “The Recorder of the Ballyopreen. An Election Record,”  145 Goffman, Erving on the body  2, 3 core assertion on self-presentation  96 development of framing  106 Goicolea, Isabel  480 Governador Valadares (GV), Brazil. See Brazil and United States, race, phenotype, nationality, Governador Valadares (GV) (study location) Graham, Wendy F.  75 Great Society Program (Johnson)  304 Green, Denise  32 Green, Robert C.  391–392 Greene, Jennifer  75 Greif, Geoffrey  248 Grew, Julie Christina  424 grooming industry (men’s grooming). See beauty consumption by men; labor of consumption by women, men’s grooming industry grounded theory, research approach  70, 96 code generation and  178n2 situational analysis and  124 use in Brazil-U.S., race, phenotype, nationality study  313 Guttmacher, Alan  388 HAES Journal  133–135, 134–135 HAES movement. See Health at Every Size (HAES) movement

Hall, Stuart  147–148, 160 Hamilton, Laura T.  330 Haraway, Donna  9, 417, 426 Harris, Anna  89 Harris, Cheryl  151 Harris, Lisa  386 The Hate That Produced Hate (TV documentary) 293 Health at Every Size (HAES) movement  121–139. See also National Association to Advance Fat Acceptance; Association to Advance Size Diversity and Health background  121, 122–123 Beyond HAES organization  131 connection to fat politics, LGBTQ activism 138 as embodied health social movement  122, 127–130, 133, 138 fat politics and  129–133, 136, 138 framing fatness (and obesity)  122–123 gendered nature of  137 history in public health  125–127 history timeline  126f International No Diet Day  134 LGBTQ/NOLOSE conference  122f, 126–127 mission of  125, 127 Omichinski on problems within  135 online resources  125–126 public health publishing strategies  132–135 HAES Journal  133–135, 134–135 Healthy Weight Journal (HWJ) 122f, 127, 133 reform movement status  136 situational analysis used by  12, 122f, 124–127, 133, 136, 138 social world fat politics segment  122f, 129–131 internal segments, critiques  131–132 public health segment  122f, 128–129 social worlds/arenas framework  124 social worlds map  122f, 124–125 Think Tank/Show Me the Data resources 122f, 126, 127 Thomas’s support for  134–135 traditional weight loss comparison  135t health care activist groups  126

index   503 Affordable Care Act passage  138 ageism, gender, and  183 biomedical model of  13, 362, 374 biopolitics/PFMCs, and  304–306 embodied spatial practices  361–375 fat activist groups  126 figurative violence and  300 LGBTQ health care  221, 226–227 masculine embodiment and  230–231 healthism ageism. embodiment, and  187–190 defined 128 HAES and  128 health social movements (HSMs)  123, 125–127, 131, 136 Healthy Weight Journal (HWJ) 122f, 127, 133, 134 hegemonic femininity  223–224, 336 hegemonic masculinity bodies, health, and  224–231 Connell (R. W.)/Schippers on  223, 224 discursive distance from  231–232 Kwan on  77 male breast cancer and  223–231 hegemony, defined  224 Hemmings, Clare  278 heritage Abdullah/Low’s work on “sensing heritage,” 62–65 ethnic heritage  30 heritage trails, Singapore  10 sensing heritage, sensory encounter  53, 62–65 heterosexualizing, sports-related  251 Hinckle, Warren  302 historical sociology  295–297 Hoang, Kimberly Kay  31–311, 38 Hochschild, Arlie, emotional labor concept  247–249, 328–329, 331, 340, 342 homophobia  34, 248, 250 Hoover, J. Edgar  303–304 Horak, Laura  89 Huh, Jina  89 Human Genome Project (2003)  380 Hunter, Margaret  276 Huntington’s disease  384 hydroquinone (in skin lightening creams)  275, 281, 284, 288

identity (identities) autoethnographies and  31 disorderliness of, in bodies  22 intersectionality’s relationship to  24 messiness of identity  22 relational intersecting identities  28–29 structural context of  26–28 Ikeda, Joanne  127 illness narratives. See YouTube vlogs, illness narratives implantable (mechanical) medical devices  165–169, 175, 177–178 findings in comparative studies  169 implantable cardiac defibrillators  168, 418 left ventricular assist devices  168 limitations/failures of  169 Nuffield Council on Bioethics on  176 range/types of  1681–69 Sharp’s study findings  169 survey responses to use of  175–176 total artificial hearts  168–169 in-depth interviewing  6, 9–10 advantages of  88 complementarity and  74 favoring by sociologists  10 HAES practitioner’s pursuit of  136 intersectionality and  76 interviewees shifting self-characterizations 31 Joseph’s use of  15 Kwan/overweight study  73–74 Narvaez on  76 Randles/fifty fathers  37–38, 42 “sensing race” sensory encounter  56 YouTube illness narratives  90, 94 India nonbinary groups  203 women/feeding and fasting bodies 258–270 Indonesia, skin lightening  276 induced pluripotent stem cells (iPSCs)  170 inductive grounded theory, research approach 313 Industrial Revolution era  146 inequality, aesthetic labor, embodiment, and 328–330 insulin-dependent (type 1) diabetes. See diabetes

504   index insulin infusion pumps  414, 416, 420f, 425 interactive/transformative body, and intimate partner violence  483–485 International Journal of Cosmetic Science 274 International Journal of Dermatology 274 International Journal of Molecular Science 274 International No Diet Day  134 International Obesity Taskforce  105–106, 112 Internet HAES online resources  125–126 illness narratives and  88 library databases  277 self-completion online questionnaires  179 social media apps  102, 127, 348, 358–359, 440 interpersonal violence  30 intersectionality (intersectionality research) as an “identitarian project,”  24 Bettie/“noncategorical” intersectionality  26 Cho’s/Crenshaw’s/McCall’s approach  21–22 critiques of  22–26 definitions/applications  23, 311 identities relationship to  24 influence in sociology  21 masculine embodiment study  32–34 in mixed research methods  75–77 origins, Black feminist activists  23 relational identities and  28–29 social movements and  22, 24 use in journalism  23 use of “race, class, gender” triad  24–25 intersex advocacy  205, 213–214 intersex children  202, 205, 212–213 intersex statuses  199, 203–205, 215, 216n1 intersexuality  205, 210, 212, 213 interviews Casanova/middle-class men’s dress  29–30 face-to-face interviews  3, 8, 10–11, 75, 82n2, 96, 248–249, 348, 449 formal, in fatness framing  108 framing and  107 Kwan/use of qualitative/quantitative interviews  72, 73 limitations of  32 male breast cancer study  223, 225, 228 men’s beauty consumerism study  242–243 in mixed research methods  32 noncompliant interviewees and  32

qualitative interviews  75, 78–80 questionnaires and  21 semi-structured  207, 312, 364, 400 Singapore and Dubai, low-wage male migrant labor study  345–359 spot interviews  347 strategies for establishing racial, gender, sexuality identity  30 use in Brazil-U.S., race, phenotype, nationality study  313 use of concept cards  30–31 use of open-ended questions  30–31, 80–81 intimate partner violence (IPV)  469–486. See also figurative violence active body and  480–481 assessment of women’s agency in  470–471 descriptions of body/embodiment  476 dominated/injured body and  481–483 Ethiopian women and  480–481, 482 feminist perspective on  470 interactive/transformative body and 483–485 Kant and  481, 483 Latina women/marianismo and  482 Lebanese women and  482 Nicaraguan/Mexican women and  480 patriarchal violence  217n12 physical/psychological consequences  483 researcher characterizations of  469–470 scoping review of  469, 471–472 article screening, groupings  472–473, 479t findings/results 473–479 focus, design, setting  473 literature search results (table)  474t review and analysis  473 search strategy  472 types of resistance by women  470–471 covert vs. overt  476, 478t, 486 everyday resistance  480 incident vs. practice  476, 483, 484 types/definitions (table)  476, 477t verbal vs. physical  476, 478t varied interpretations of research on  470 women’s agency and  470–471, 476, 477t, 480–481, 483–485 Irish/Celtic Irish women. See also Anglo-Saxon American women; German women

index   505 Banner’s research findings  147, 151 description as “hybrid” white group 150 fatness as grotesque  156–159 fatness as sign of good health  155 German women comparison  147, 152 Godey’s Lady’s Book characterization of  145, 158 negative depiction of  147 Prichard’s description of  150 research findings  153 research methods  151–152 Jalan Besar Community Trail (heritage trail) 64 Jhally, Sut  148, 160 Jim Crow customs, racist institutions  300 Johnson, Lyndon  300, 304 Johnston, Josee  259–260 Joseph, Tiffany  15 journalism, use of intersectionality in  23 Journal of the American Medical Association  109, 113 Judaism, binary sex (gender ideology) and 201 Kaiser, Susan  32 Kang, Miliann  239–240 Kant, Emmanuel  481, 483 “Kate Leonard’s Great Match” (Godey’s Lady’s Book) 153 Ken, Ivy  25–26 King, Martin Luther, Jr.  299–300 Kohlman, Marla  27 Ku Klux Klan  294, 304 Kwan, Samantha development of framing contests  106 use of quantitative interviews  72, 73–74 labor of consumption by women, men’s grooming industry  239–252 Adonis/The Executive (high-service salons) 240–253 Black/Sharma’s “beauty therapists” research 247 caring for men  247–249 client profile  243 description 241–242

formal/informal organizational rules at salons 241 introducing men to beauty  243–247 learned cultural repertoires  245 masculinizing of labor of providers  241 pampering men  249–252 political undertones  241–242 research study description  242–243 role in educating men on style  244–246 self-description of salon workers-245 244 straight vs. gay men  244, 249 types of services  239–240, 249–250 use of biologized/masculinized language 246–247 lateral violence  210, 215, 216n10 Lawrence, Regina  106 laying hands. See search and seizure (“laying hands”)/learning to touch (in the police academy) Lee, J.  224 Lefebvre, Henri  362–363, 373, 375n2 The Production of Space  362–363, 373, 375n2 theory of social production of space conceived space  362–364, 368–371, 373–375 gestural systems  363 “illusion of transparency”/“realistic illusion,” 365 lived space  362–364, 366–375 perceived space  362–364, 366, 373, 375 left ventricular assist devices (LVADs)  168 lesbians body image and  185–186 HAES and  133, 137, 138–139n1 identity labeling issues  211 Lewis, Dana  422–424. See also do-it-yourself pancreas (DIYPS) movement LGBTQ (lesbian, gay, bisexual, transgender, queer) people. See also gay men; lesbians; transgender people connection to HAES activism  138 conversion therapies (twenty-first century) 204–205 Fenway Health and  221–222, 226 LGBTQIOA+advocacy-related scholarship 200–201 NOLOSE conference focus  126

506   index Liu, Leslie  89 lived space  362–364, 366–375 Lomax, Louis  293 Louis X  293 low-wage migrants. See Singapore and Dubai, low-wage male migrant labor Lyme disease (contesting Lyme disease), autoethnograpnic study  431–443 biomedical/alternative biomedical frameworks 432–433 CDC on  432, 438, 443 contested illness experiences  442 contesting medical governance of  441–443 diagnostic/treatment inaccuracies  431–432 infection data, U.S. (2017)  431 “Lyme Wars” dispute  432, 443 medical governmentality and  431–432 PTLDS (post-treatment Lyme disease syndrome)  433–433, 441 sickness symptoms, progression  435–441 social constructions of  432–433, 442 as “syndrome” vs. “disease/infection,”  433, 442 treatments/treatment suggestions  432, 438–442 undiagnosed/untreated/chronic progression 441 Mairs, Nancy  6 MAKE magazine  422–423 Malcolm X  299–300, 302 The Male Body (Bordo)  239 Manson, JoAnn  113–114 Marandet, Elodie  54–55, 62 marginalized bodies  11–14 aging and death  12–13 bodily sex beyond binaries  13 fatness and body size  12 modifiable bodies  14 markets, relationship of bodies to  27 Markets and Bodies (Otis)  27 masculinity beauty consumption study  239–252 class-located meanings about  34 Connell/Schippers on  223 critical masculinity research  241 feeling rules  248

hegemonic masculinity  77, 223–224, 226–233, 248, 251 hypermasculinity 226 impact on gendered interactions with researchers 186 later life sexuality and  184 male breast cancer and  221–233 masculine embodiment study  32–34 “masculinity displays,”  47–48 normative masculinity  47, 224, 228, 230 older adults body management practices 190 smells related to  60 sports-related heterosexualizing  251 Styling Masculinity (Barber)  240 as tool for social action  185 touching rules  250–251 Mason, Katherine  311 Mazzie, Julie  43 McCall, Leslie  21 meaning-making  76, 87, 361 Mears, Ashley  330 Medicaid 304 medical governmentality  431 medical markets (medicine-commerce relationship) 381–382 medical sociology  381, 393–394 Medicare 304 Medtronic Diabetes, Inc.  413–415, 415f, 427n5, 427n9 men (males). See also beauty consumption by men; gay men; masculinity; Singapore and Dubai, low-wage male migrant labor aging body image issues  184–187 beauty consumption study  239–252 Bird/research on homosocial interactions 248–249 Casanova’s interview on dress  29–30 cis men  204, 206, 209–211, 214, 221–222, 225, 229–232, 233n2 Craig/Sorry I Don’t Dance study  32–34 male breast cancer  221–233 man-to-man relationship types  248 masculine feeling rules  248 metrosexual, defined  239 Othered men and obesity  156

index   507 trans men  208, 210–212, 222, 226, 231–233 women helping men become “men,”  241 mercury derivatives (in skin lightening creams) 275 metrosexual, defined  239 Mexican American men, “looking good” habit 240 migrant labor in Singapore and Dubai. See Singapore and Dubai, low-wage male migrant labor Mills, C. Wright  6 MiniMed 670G, hybrid closed-looped system (artificial pancreas)  413–416, 415f, 427n5, 427n9 bioethical concerns regarding use  416 concerns regarding cost factors for patients 415–416 description  414–415, 415f FDA approval  413–414 results of clinical trials  415 Mire, Amina  275 mixed research methods  32–34 advantages of  72 complementarity of  73–74 components of  32 conceptualizations of  71–72 continuum of categories within  71 convergent design method  71–72 Creswell on  71, 77 development of  75 drawbacks and challenges  77–78 England/unmarried women, pregnancy, contraceptive use  78–80 examples explanatory sequential design  71–72 exploratory sequential design  71 Kwan/body weight study  11, 73–78 missed bodies study  71 multisited ethnographies  71 intersections, lived embodiment  75–77 Kwan/body weight study  11, 73–78 lived embodiment  71–78 in masculine embodiment study  32–34 organ transplantation study  164–179 Pure Mixed  71 reasons for preferring  69 sequential design method  71–72, 78

triangulation and  71, 73–75 wave one research phase  72, 80 Weinberg/William on  70, 72, 80–81 Weinberg/Williams, nude embodiment  80–81 Mohanty, Chandra Talpade  278, 284 Moore, Lisa Jean  71, 233 Moore, Stephanie  386 Morgan, Lynn Marie  200 motherhood heightened social surveillance during  40 managing future risk, present uncertainty 405–408 managing risky bodies and  400–404 Mulford, Don  303 Mulford Act (1967) (California State Legislature) 303 multiply situated bodies  7–9, 18 Muslim Girl Training Classes  298 Narvaez, Rafael  76 Nash, Jennifer C.  24 Nashville Statement (Council on Biblical Manhood and Womanhood)  204 National Association to Advance Fat Acceptance (NAAFA)  112, 128 National Association for the Advancement of Colored People (NAACP)  298 National Association to Advance Fat Acceptance 73 National Heritage Board (NHB)  62–63 National Institutes of Health (NIH)  112, 380 National Public Radio (NPR)  105 National Science Foundation (NSF) Doctoral Dissertation Improvement Grant  74 National Society of Genetic Counselors (NSGC)  383–384, 386–387 Nation of Islam  293, 298–299 Native nations, names for nonbinary sex/genders 202 Navigenics  380, 383, 389–391, 394n3 Neiterman, Elena on personal experience of pregnancy  41 on women’s expectations to “do gender,” 40 Nelson, Alondra  137 neo-Nazis 294

508   index Nettleton, Sarah  416 news media, fatness research analysis of news articles sampling  108–109, 114–115 coding 110–111 comparative analysis findings  106–107 experiments 111–112 health-related findings  106 key findings  112–1115 Lawrence on  106 sources 108–109 textual analysis  107 Newton, Huey  300–302 Nichter, Mark  432 Nickson, Dennis  327 Nietzsche, Friedrich  363 NOLOSE conference  122f, 126–127 nonbinary sex/gender understandings  200–207, 215–216 nonrepresentation theory (Thrift)  346 normative femininity  222 normative masculinity  47, 224, 228, 230 North Bay Police Academy (NBPA)  451 nude embodiment study  80–81 Nuffield Council on Bioethics (United Kingdom)  168, 176 Nuffield Council (United Kingdom)  168 Nutter, Sarah  128 NVivo, computer-assisted qualitative data analysis qualitative software (CAQDAS)  78, 81, 95, 97–98, 178, 313, 384

organ transplantation survey  165–179 behavioral changes  165 focus groups  166, 170–175, 177, 178n2 gender changes  165 human-to-human 165 mechanical/implantable devices  165–169, 175, 177–178 methods/focus groups, questionnaires 170–171 questionnaires  166, 170–171, 174, 179 SPSS® Statistics, software analysis  171 survey results  171–176, 172t implantable, mechanical devices  175–176 3D bioprinting  171–173 xenotransplantation 173–175 thoughts on anticipated consequences  13 3D bioprinted organs  166–173, 177 xenotransplantation (animal-to-human)  165, 167–170, 173–175, 177–178 “othered” bodies racially Othered men  156 racially Othered women  147 social regulation of  3 Otis, Eileen  27 Oudshoorn, Nelly  418 overweight body research  73–78, 82n1. See also fatness (obesity) BMI and  105–106 comparative media analysis  106–107 news media coding  110 news media sampling  106–109 research findings  113–115

Oakland Panthers  300 obesity. See fatness (obesity) O’Brien, Erin E.  43 ochronosis (skin darkening, disfiguration) 275 Öhman, Ann  480 Ojibwe Nation  202 Oliver, J. Eric  130 O’Malley, Lisa  471–472 Omi, Michael  148 Omichinski, Linda  135 Open Artificial Pancreas System (OpenAPS) 422–424 open-ended questions  30–31, 80–81

pancreas (artificial pancreas). See artificial pancreas in cyborg bodies; MiniMed 670G, hybrid closed-looped system (artificial pancreas) parenting. See also fathers; motherhood; pregnancy choices made by mothers  409 embodied risk and  409–410 fathers’ projection of successes  38 heightened social surveillance during  40 ideologies, practices, class privilege, and 398 making sense of embodied risk and 409–410

index   509 managing future risk, present uncertainty 405–408 meanings of pregnant bodies and  40 pregnancy, risk management, and  398–399 responsible fatherhood programs  10, 37, 42–43, 45–46, 49–50 social norms of  41 vaccination, uncertainty about  399 vaccines and  400 values and beliefs  10 Parsons, Talcott  381 Pascoe, Cheri J.  330 patriarchal violence  217n12 Pelkey, Charles  229–230 Pelto, Pertti J.  70 People magazine  249 People’s Free Medical Clinics (PFMCs) 304–306 perceived space  362–364, 366, 373, 375 personhood  2, 32 Peterson, Jordan  200 PFMCs. See People’s Free Medical Clinics phallocentrism 217n12 physical activity aging and  186, 189 HAES/fat politics and  129–132 older gay men and  186 technologies of embodiment and  322 weight loss and  135t Pink, S.  54, 55 police (policing). See also search and seizure (“laying hands”)/learning to touch (in the police academy) bodily co-presence with others  455 bodily instruction/learning to recognize patterns 453–454 collective conditioning during training 450 new recruits, challenges  451–452, 454, 457 shooting of Michael Brown  452 symbolic economies of  455–460 political sociology  295–297 porcine islet cells  167–168 post-treatment Lyme disease syndrome (PTLDS)  433–433, 441 postviral syndrome  439

Potts, Laura K.  223 pregnancy. See also pregnant embodiment fieldwork belly effect (embodied reflexivity)  40–41 challenges/need for medical interventions 400–404 choices made by mothers  409 decision to terminate  387 embodied risk and  409–410 feminist’s critique on medicalization of  22 heightened social surveillance during  40 home pregnancy tests  380, 382, 385, 393 as invitation for social commentary, questioning 37 mixed methods research  79 parenting, risk management, and 398–399 trans stories about  101 weight loss concerns  264 women’s expectations to “do” pregnancy 40 pregnant embodiment fieldwork  37–50 belly effect (embodied reflexivity)  40–41 “doing” gender and pregnancy  46–49 field research and  37–50 Reich/experiences as pregnant researcher 40–41 studies of fathers  42–49 Young/theories of the pregnant body  41 Prichard, James Cowles  150 The Production of Space (Lefebvre)  362–363, 373, 375n2 Puar, Jasbir  23, 34 public health. See also fatness (obesity); Health at Every Size (HAES) movement Black women and  28 education campaigns  409 health checks at clinics  305 Kwan’s analysis of  73 LGBTQ health concerns  221 obesity research, framing methods  12, 73, 106–115 pregnancy, parenting, and  398 skin bleaching and  287 websites of organizations  226 Puhl, Rebecca  129, 139n2

510   index Qualitative Comparative Analysis  81 qualitative research methods  9–10. See also ethnographic studies; in-depth interviewing; mixed research methods; quantitative research methods advantages of  72 body as “absent presence” in  1, 38 characteristics of qualitative ­researchers  6–7, 39 Chicago School, case studies  70 concerns about  69 described  6–7, 39 face-to-face 10 historical background  69 important of the senses  53 interpretive nature of  39 Kwan/beauty and weight loss industry 73–74 mixed-methods approaches and  9–10, 11 NVivo, qualitative software  78, 81, 95, 97–98, 178, 313, 384 parental opposition to vaccine study 399–409 Pure Qualitative  71 qualitative content analysis  6 qualitative interviews  75, 78–80 qualitative-quantitative divide  69–70 senses research  53–66 skin lightening study  278 types of techniques  6 use of demographic open-ended questions 29 quantitative research methods. See also mixed research methods; qualitative research methods Chicago School, case studies  70 fatness/obesity analysis  111 Kwan/beauty and weight loss industry 73–74 Kwan/use of quantitative interviews  72 limitations of  69 in mixed method  11 mixed-methods approaches and  9–10, 11 Pure Quantitative  71 qualitative-quantitative divide  69–70 qualitative-quantitative divide, blurring of 69 suspiciousness about  6

questionnaires closed-/open-ended questions triangulation and  80–81 demographic questions  21, 170 Kwan’s use of  75 organ transplantation studies  166, 170–171, 174, 179 self-completion online  179 Sutton/use of open-ended questions  30–31, 34 triangulation and  74 Weinberg/Williams, open-ended  80–81 race biology informed scholarship on  310 and body, in Brazil  311–312 body image and  186, 191 body privilege and  154 Brazil’s flexible boundaries  309 Celtic Irish, characterization as “Africanoid” race  147, 150 as a discursive concept (Hall)  147–148 as a “floating signifier” of bodies  147–148 global assessments of  309 Harris on whiteness and social benefits 151 influence on male beauty consumption 240 intrawhite hierarchy (Europe, early 19th century) 149–150 Linneaus’s promotion of scientific racism 149 macro-level structures, institutions  309 mixed methods analysis and  72 phenotype, nationality, and  309–324 racial equality activism  295, 298 racially “othered” bodies  3 racial projects  148–149 sensing race, sensory experience  56–59 sociological understanding of  309–311 transnationalism and  15–16, 27, 275–276, 278 U.S. racism 309 The Races of Britain (Beddoe)  150 racial democracy ideology (Freyre)  311–312, 316, 321–322, 324n1 Racial Formation in the United States (Omi and Winant)  148

index   511 Racism and the Press (Dijk)  152 Ramparts literary magazine  302 Reagan, Ronald  303 “The Recorder of the Ballyopreen. An Election Record” (Godey’s Lady’s Book) 145 Reich, Jennifer  40–41 Reimer-Kirkham, Sharma  39–40 Relman, Arnold  381 reproductive labor  28–29 researcher’s body bodies as “guinea pigs” in research  62 as multiply situated  8 processes undergone by  53–54, 62 sensing encounters sensing gender  59–62 sensing heritage  62–65 sensing race  56–59 shift from “detached observer researchers” to “participant researchers,”  54–55 Wainwright/Marandat/Rizvi’s studies 54–55 Researches into the Physical History of Mankind (Prichard)  150 research methods. See mixed research methods; qualitative research methods; quantitative research methods; YouTube vlogs, illness narratives Rhodes, Shelly  389 Ricotti, Leonardo  425 Rivera, Lauren  330 Rizvi, Sadaf  54–55, 62 Roundtree, Richard  225–226, 228–229, 231 The Routledge Handbook of Body Studies (Turner) 5 Rubin, Gayle  2 Rudd Center for Food Policy and Obesity 139n2 Saguy, Abigail  123 Salazar, Mariano  480 same-gender marriage  204 sampling, news media, fatness research  108–109, 114–115 Saraswati, L. Ayu  276 Schippers, Mimi  223, 224 Schultz, Marlene  139n2

Schwalbe, Michael  42, 46–47 scoping review, of intimate partner violence (IPV)  469, 471–472 Seal, Bobby  300 search and seizure (“laying hands”)/learning to touch (in the police academy) 447–466 deciding to stop someone  452–453, 466n4 defined/described 449 “feeling rules,”  460 Fourth Amendment lawsuits  450, 452 hand formations, movements, manipulations 451–452 bodily instructions in using  453–454 moral injunctions to lay hands  457–458 moral violations  458 real-life practice  461–462 relating to hands of others  455–456 high stakes of  450–451 imperatives for conducting stops  453 learning to recognize patterns  453–454, 461–462 new recruits, challenges  451–452, 454–465 overcoming the taboo  459–460 overview 452–454 as perceptual competency  454–455 research methodology  451–452 searching, defined  454 seizing, defined  454 “Stop and Frisk” policies (NYC)  450 Second Life support/social groups  207–214, 216nn9–10, 217n15 self-representation 30 sensing heritage (sensory encounter)  62–66 sensory experience as method  53–66 importance in qualitative/ethnographic research 53 multisensorial embodied engagements  54 sensing gender  53, 59–62 sensing heritage  53, 62–65 sensing race  53, 56–59 shifting power relations/positionality  54–55 Wacquant and  39 sequential design mixed method  71–72, 78 sex categories of bodies  5 sex change clinics  204 sex/gender binarism  199

512   index sexuality/sexual orientation. See also cisgender members; gay men; lesbians; LGBTQ (lesbian, gay, bisexual, transgender, queer) people; transgender people; transsexual people aging, death, and  12–13 Bettie’s Women without Class study  26–27 body image and  185–186 Casanova’s intersectionality study  29–30 Craig/Sorry I Don’t Dance study  32–34 cultural disregard for women’s pleasure  22 Kaiser/Green’s study on men’s relationships to fashion  32 later life aging-related issues  184–186, 185–186 multiply situated bodies and  8 Otis’s Markets and Bodies study  27 race/social class and  31 sex variant births  205 Sharma, Ursula  247 Sharp, I.  169 Shilling, Chris  1, 5 Shuren, Jeffrey  414 Simmel, Georg  2, 66 Simpson, Mark  239 Singapore and Dubai, low-wage male migrant labor 345–359 bodies of simultaneous affinity and difference 353–355 body as technology (machine)  349–351 confrontations with racially/culturally foreign Other  356–357 denial of corporeal and cultural affinity, coethnic Other  353–354 disembodied practices of friendship, kinship 358–359 disgust/discomfort shown to migrants, on public trains  349–350 distancing effect of foreign, working-class bodies 353 embodying the ideal urban resident 356–358 enforced mobility of workers  349–350 habitus and  356 impact of migrants’ exposure to modern technology 356 initial body manipulation to establish connections 354–355

labor camps  346–349, 352, 358 language-related barriers  357–358 Little India riots, Singapore  353 neglect to worker’s bodies  351 neoliberalization of public space, consequences 351–352 potential dangers to female researchers 349 predictable, repetitive, uninteresting work 350 profile of interviewees  347 study methodology  346–349 accessing marginal bodies  348–349 embodied methodologies  347–348 face-to-face interviews  348 interviews, transect walks  347 photo/video elicitation  347–348 profile of interviewees  347 social media  348, 358–359 Tamil migrants’ affinity for Singapore 353–354 temporary migrant work data  345 treatment of workers  348 unproductive male migrant bodies as threat 352–353 use of social media by migrants  358–359 single-axis analysis  21, 22, 30–31 conventional/open-ended questions and 30–31 situational analysis, Health at Every Size (HAES) movement  12, 122f, 124–127, 133, 136, 138 size acceptance movement  134 skin atrophy  275 “Skin Brighteners Find a Welcome” (New York Times) 273 skin lightening (bleaching)  273–289 Africa/Africans/use of products  275–276, 279–280, 284, 286, 288 Arab women, use of products  282, 286 articulation of biological race  286–287 Asia/Asians, use of products  273–275, 279–281, 284, 286, 288 Europe/European union, use of ­products  274–277, 279, 284–287 framing of information about  274, 279–281, 285 global use of  275

index   513 health-related complications caused by  275, 279 ingredients  275, 281, 284, 288 marketing of, symbols and messages 275–276 Mire’s research on  275 professional medical journals on 274–275 representation of different bodies, embodiment 283–285 scientific studies, articles  274–276, 284, 286 social scientists/gender scholars on  276 study data, methods  277–278 study findings  278–287 articulation of “therapy” vs. “harm,”  282–283 articulation of U.S. exceptionalism  279–281 class/educational differences  283 experimental studies  279 recurring narratives  278–279 representations of different bodies, embodiment 283–285 terms used to articulate biological race 286–287 types of products  273–274 United States, use of products  273–276, 279–281, 284, 287 Smith, Dorothy  4 social class American Beauty study (Banner)  146–147, 151, 154, 160, 161n1 fat phobia and  146 femininity, fatness, and  146–147, 151, 153–154, 161n social construction defined 210 feminist social constructionist model 4 of health as a personal duty  188–189 influence on self-perception  82 of Lyme disease  432–433 of medical expertise and certainty  17 of the obesity epidemic  139 of physical attractiveness  187 of poor health  188–189 race as a social construction  311, 321

social location (standpoint) insights offered by  6, 21 messiness of identity and  22 social media apps Facebook  102, 127, 348, 358–359, 440 Facetime 359 Whatsapp  348, 358–359 social movements. See also Health at Every Size (HAES) movement as alerts to researchers  24 Black feminist activists and  23 Black social movements  295 bodies and  15 embodied social movements  124, 379 figurative violence and  294–297, 306 Goffman on examining  106 intersectionality and  22, 24, 29 key parts of  293 limited control of dominant groups  293 paradoxes faced by  293 race-based movements  312 racial projects and  160 role in creating group membership  297 role in inscribing power on the body 294 sample contingency table  297t social movement theory  24, 136 Social Security Act (1965)  304 The Social System (Parsons)  381 social violence  30 socioeconomic status mixed methods analysis and  72 somatechnology 418 South Asian male migrant bodies. See Singapore and Dubai, low-wage male migrant labor South Bay Police Academy (SBPA)  451, 456 Southern Christian Leadership Conference (SCLC) 299 spatial practices. See embodied spatial practices spatial sociology  361 spinal cord stimulation (SCS)  416 “spit kits” (DTC genetic testing kits)  380 sports body/sensory experiences research  54 sports-related heterosexualizing  251 SPSS® Statistics, analytic software  171 standpoint theory  6, 39

514   index state violence  15, 296 stereotypes (stereotyping) absentee father  45–46 Black dad father  46 fathering issues of men  38 fat people  114 of older adults (ageism)  183–185, 190 white men and dance  33–34 “Stop and Frisk” policies (New York City)  450 Strauss, Anselm L.  124, 136 Strings, Sabrina  28, 29 Stuart, Forrest  330 Student Non-Violent Coordinating Committee (SNCC)  299–300 Styling Masculinity (Barber)  240 sudden infant death syndrome (SIDS)  49 Sulik, Gayle  222 surveys. See also organ transplantation survey inadequacies of  76 Kwan’s use of  72, 74–75 in mixed research methods  32, 72 qualitative  72, 81 quantitative  11, 72–75, 81–82 reasons for using  26 survey-driven narrative construction  81 use in mixed methods  32 Sutton, Barbara  30–31, 34 Svendsen, Mette Nordahl  424 Syncardia, biotechnology company  168–169 syndromes, medical  433 chronic fatigue syndrome  433, 438, 439 cubital tunnel syndrome  342 Cushing’s syndrome  275 post-treatment Lyme disease ­syndrome  433–433, 441 post viral syndrome  439 sudden infant death syndrome  49 Systema Naturae (Linneaus)  149 TAHS. See total artificial hearts Talley, Heather  71 Tay-Sachs disease  384 Terry v. Ohio, 392 US 1 [1968]  452 Think Tank/Show Me the Data resources (HAES) 122f, 126, 127 “This American Life” (NPR)  105 Thomas, Pattie  134–135

3D bioprinting organs technology  166–173, 177 emergence/popularity of  166 focus groups/questionnaires  170 implanting medical devices comparison 167 mechanics of/types of printers  170 risk factors  170 survey responses to use of  171–173 xenotransplantation comparison  169 Thrift, Nigel  346 topical steroids (in skin lightening creams) 275 total artificial hearts (TAHs)  168–169 Towle, Evan B.  200 transect walks (walking with informants) 347 trans-exclusionary radical feminists (TERFs)  200, 212, 214, 217n12 transgender people. See also gay men; gender transitions; lesbians; LGBTQ (lesbian, gay, bisexual, transgender, queer) people breast cancer in  221–222, 225–227, 230–232, 233–234n5, 233n2 limited research on older adults  184, 191 Lyme disease autoethnography  431–443 transgender men  225–227, 233–234n5, 233n2 transgender vloggers  89 trans women/trans girls  217n15 transnationalism  15–16, 27 Brazil-U.S. race relations research  311, 322–324 race and  15–16, 27, 275–276, 278 transsexual people. See also breast cancer in men case studies  208–211 medical treatment access challenges 206–207 risk factors for  206 Second Life support/social groups for  207–214, 216nn9–10, 217n15 struggles for autonomy, acceptance  204, 207 tensions with intersex communities  207 trans men  208, 210–212, 222, 226, 231–233

index   515 trans women  201, 204, 209–213, 215, 216–217n11, 216n1, 217n15 “true trans” vs. “gender players,”  214 triad “race, class, gender” triad Ken on  25–26 Ken’s metaphor on  25–26 masculine embodiment study  32–34 methodology convention of separating  29 strategies for establishing in interviews  30 use in intersectionality  24–25 The Trial play (Louis X)  293 triangulation, research methodologies  71, 73–75, 74–75 Turner, Bryan  5 23andMe  89, 380, 383, 389–391, 394nn2–3, 395n7 United States (U.S.), Brazil and United States, Governador Valadares (GV), nationality, phenotype, race as the epitome of racism  309 race, phenotype, nationality  309–324 “responsible fatherhood” programs  10, 37, 42 use of skin lightening products  273–276, 279–281, 284, 287 University of Islam  298 US v. Neff, 300 F.3d 1217 [10th Cir. 2002]  452 vaccinations, parental opposition study  399–409 information gathering/decision-making of parents  405–406, 409–410 managing future risk, present uncertainty 405–408 motherhood, risky bodies, and  400 opting out vs. under vaccination  400 parental uncertainty about  399 parent profiles  399–400 religious beliefs and  404 study methods  399–400 Venkatesh, Sudhir  327 Vidal-Ortiz, Salvador  31 Vietnamese sex workers  310 violence 293–307. See also figurative violence; intimate partner violence bodies and  17–18

criminal violence  288 figurative violence  15, 291–307 gender reassignment surgery and  209–210 interpersonal violence  30 lateral violence  210, 215, 216n10 patriarchal violence  217n12 social violence  30 state violence  15, 296 TERF theory, phallocentrism, and  217n12 vlogs/vlogging. See YouTube vlogs, illness narratives Voting Rights Act (1965)  300 Wacquant, Loïc “bodily capital” discussion  379 on the body as agent of knowledge and experience 53–54 on “carnal sociology (ethnography)  4, 6, 53–54, 451–452 enactive ethnography notion  62 focus on ethnographic body studies  6, 330 turn as an apprentice boxer  38 Wainwright, Emma  54–55, 62 Wallace, George  303 Wallace, Mike  293 Warhurst, Chris  327–329 War on Poverty  304 wave one research phase  72, 80 “Weight Bias and Discrimination: Treat Thy Neighbor as Thy Self ” session (Weight of the Nation conference)  129 Weight of the National conference (2012) 129 Weight Watchers  112 Weinberg, Martin S  70, 72, 80–81 Whatsapp  348, 358–359 What’s Wrong with Fat (Saguy)  123 white supremacists  294–295, 304, 422 wig checks  3 Wiley Online Library (WOL)  277 Willett, Walter  113–114 Williams, Christine  329 Williams, Colin J.  70, 72, 80–81 Winant, Howard  148 Witz, Anne  327 Wolkomir, Michelle  42, 46–47

516   index women (females). See also labor of ­consumption by women, men’s grooming industry; lesbians; men (males) behaving “like a girl,”  247–248 body image aging issues  185 breast cancer and  221–223, 225, 227–232, 233n1, 233n4 cis women  211–212, 214, 216–217n11 conflated vanity of  244 cultural disregard for women’s sexual pleasure 22 grooming industry labor of consumption by 241–252 India/feeding and fasting bodies  257–270 masculinizing labor in men’s beauty consumption 241 negative relationship with food  257–258 role in helping men become “men,”  241 trans women  201, 204, 209–213, 215, 216–217n11, 216n1, 217n15 Women without Class (Bettie)  26–27 World Health Organization (WHO)  112–113 xenotransplantation (animal-to-human)  167–170, 173–175, 177–178 animal-based products  167–11689 bio--prosthetic heart valves  167 Douglas on  174–175 ethical/social questions about  168 focus groups/questionnaires  170 limited success  168 organ rejection failures  169 porcine islet cells  167–168 religion and  173–174 social antipathy toward  173 “yuck”-type survey responses to  173–175, 177 Yoshimuzu, Ayaka  63–64 Young, Iris Marion  22, 41 YouTube vlogs, illness narratives  11, 87–102 “affordances” contained in  89

benefit of  88 “biographical disruptions” and  88 “Broadcast Yourself ” ethos (of YouTube) 99 challenges of using  93 Chou/narrative analysis of  88–89 civilized/uncivilized bodies  98 coding the data concepts codes  96–97 dramaturgical codes  97 improvisational vs. scripted performances 99 Précis memos/cinematic framing  97–98 thinking with and past codes  99–100 description 87–90 fluoroquinolone (FQ) toxicity vloggers  89–95, 99 Goffman-Performance, categories, dimensions 98–99 Harris on layers of meaning in  89 Huh on props used in  89 improvisational performances  99 improvisational vs. scripted performances 99 Leder’s assertions about  89 Liu on “affordances” of  89 methodological approach  95 misinformation/accuracy issues (of vlogs) 88 researcher’s concerns about vlogs  88 sample selection  92–95, 94f sampling frame development  90–92 searching for videos  91–92 super-vloggers  91–94, 94f, 100 types of dramatic devices of vlogs  99 use of ATLAST.ti video analysis software 95 use of NVivo, qualitative data analysis software 95 “wounded storytellers” and  88 Zelizer, Vivianna  381–382