Reproductive disruptions: gender, technology, and biopolitics in the new millennium 9781845455958, 9781845454067, 9780857455635

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REPRODUCTIVE DISRUPTIONS

Fertility, Reproduction and Sexuality GENERAL EDITORS:

David Parkin, Director of the Institute of Social and Cultural Anthropology, University of Oxford

Soraya Tremayne, Co-ordinating Director of the Fertility and Reproduction Studies Group and Research Associate at the Institute of Social and Cultural Anthropology, University of Oxford, and a Vice-President of the Royal Anthropological Institute Marcia Inhorn, William K. Lanman Jr. Professor of Anthropology and International Affairs, and Chair of the Council on Middle East Studies, Yale University

Volume 1

Managing Reproductive Life: Cross-Cultural Themes in Fertility and Sexuality Edited by Soraya Tremayne Volume 2

Modern Babylon? Prostituting Children in Thailand Heather Montgomery Volume 3

Reproductive Agency, Medicine and the State: Cultural Transformations in Childbearing Edited by Maya Unnithan-Kumar Volume 4

A New Look at Thai AIDS: Perspectives from the Margin Graham Fordham Volume 5

Breast Feeding and Sexuality: Behaviour, Beliefs and Taboos among the Gogo Mothers in Tanzania Mara Mabilia Volume 6

Ageing without Children: European and Asian Perspectives on Elderly Access to Support Networks Philip Kreager and Elisabeth Schroder-Butterfill Volume 7

Nameless Relations: Anonymity, Melanesia and Reproductive Gift Exchange between British Ova Donors and Recipients Monica Konrad Volume 8

Population, Reproduction and Fertility in Melanesia Edited by Stanley J. Ulijaszek Volume 9

Conceiving Kinship: Heterosexual, Lesbian and Gay Procreation, Family and Relatedness in the Age of Assisted Conception in South Europe Bonaccorso, M. Volume 10

Where There is No Midwife: Birth and Loss in Rural India Pinto, Sarah Volume 11

Reproductive Disruptions: Gender, Technology, and Biopolitics in the New Millennium Inhorn, M. C.

REPRODUCTIVE DISRUPTIONS GENDER, TECHNOLOGY, AND BIOPOLITICS IN THE NEW MILLENNIUM

Edited by

Marcia C. Inhorn

C. Berghahn Books New York ¢ Oxford

Published in 2007 by

Berghahn Books www.berghahnbooks.com ©2007, 2009 Marcia C. Inhorn First paperback edition published in 2009 All rights reserved. Except for the quotation of short passages for the purposes of criticism and review, no part of this book may be reproduced in any form or by any means, electronic or mechanical, including photocopying, recording, or any information storage and retrieval system now known or to be invented, without written permission of the publisher.

Library of Congress Cataloging-in-Publication Data Reproductive disruptions : gender, technology, and biopolitics in the new millenium / edited by Marcia C. Inhorn. p.; cm. -- (Fertility, reproduction, and sexuality ; v. 11) Includes bibliographical references and index. ISBN 978-1-84545-406-7 (hbk : alk. paper) -- ISBN 978-1-84545-595-8 (pbk : alk. paper) 1. Human reproduction--Social aspects. 2. Human reproduction--Political aspects. 3. Reproductive health--Social aspects. 4. Human reproductive technology--Social aspects. 5. Gender identity. 6. Feminism--Health aspects. I. Inhorn, Marcia Claire, 1957- II. Series. [DNLM: 1. Reproduction. 2. Feminism. 3. Interpersonal Relations. 4. Politics. 5. Reproductive Behavior. 6. Reproductive Techniques. WQ 205 R42278 2007] QP251.R444473 2007 612.6--dc22

2007019848

British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library

ISBN 978-1-84545-406-7 hardback, 978-1-84545-595-8 paperback

In memory of Gay Becker, friend and pioneering scholar of reproductive disruptions

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CONTENTS

Preface ix

Marcia C. Inhorn

Introduction: Defining Women’s Health: A Dozen Messages

from More than 150 Ethnographies ]

Appendix 35

Marcia C. Inhorn

PART I

Reproduction and Disruption: Redefining the Contours of Normalcy

1. The Dialectics of Disruption: Paradoxes of Nature and

Professionalism in Contemporary American Childbearing 47 Caroline H. Bledsoe and Rachel F. Scherrer

2. Designing a Woman-Centered Health Care Approach to Pregnancy Loss: Lessons from Feminist Models of Childbirth 79 Linda Layne

3. Enlarging Reproduction, Screening Disability 98 Rayna Rapp and Faye Ginsburg

4. Openness in Adoption: Re-Thinking “Family” in the US 122 Harold D. Grotevant PART II

Reproduction, Gender, and Biopolitics: Local-Global Intersections and Contestations

5. Can Gender “Equity” in Prenatal Genetic Services

Unintentionally Reinforce Male Authority? 147 C. H. Browner

vill Contents 6. When the Personal is Political: Contested Reproductive

Strategies among West African Migrants in France 165 Carolyn Sargent

7. Reproductive Disruptions and Assisted Reproductive

Technologies in the Muslim World 183

Marcia C. Inhorn

8. The Final Disruption? Biopolitics of Post-Reproductive Life 200 Margaret Lock

List of Abbreviations 225

Index 231

List of Contributors 227

PREFACE Marcia C. Inhorn

As decades of ascholarly the last twenty-five have witnessed veritableneglect, “explosion” of social science years research on human reproduction. Largely as a result of the feminist movement and the entrance of greater numbers of women into the academy, few aspects of the human reproductive life cycle, particularly as it pertains to women, have been left unexamined by social scientists working in a wide variety of cultural settings. The introduction to this volume, entitled “Defining Women’s Health: A Dozen Messages from More than 150 Ethnographies,” provides a thematic summary of this vast body of anthropological literature on reproduction and, more generally, women’s health. In an essay in Public Culture, anthropologists Rayna Rapp and Faye Ginsburg note the “cresting wave” of scholarly and activist interest in reproduction (2001). They identify a dozen recent genealogies of social science research on reproduction. Among these genealogies, they highlight work underscoring the dilemmas of “disrupted reproduction,” in which the standard linear narrative of conception, birth, and the progress of the next generation is, in some way, interrupted. This present volume is devoted to examining the concept of “disrupted reproduction” from a variety of analytic perspectives; the au-

thors ask what happens when reproduction is, for one reason or another, problematized. What do reproductive falterings and failures, miscommunications, and outright battles—or the politically and emo-

tionally charged contestations taking place in the everyday reproductive experiences of women and men around the globe—tell us about the subtleties of culture and power in everyday life? And how is our understanding of so-called “normal” reproduction enhanced

x Preface when we take reproductive disruptions such as infertility, pregnancy loss, adoption, and childhood disability into account?

As will be highlighted in this volume, reproductive disruption, broadly conceived, goes beyond reproductive health problems such as infertility to include, among other things, local practices detrimental to safe pregnancy and birth; conflicting reproductive goals between women and men; miscommunications between pregnant women and health care personnel; cultural anxieties over gamete donation and surrogacy; the contested meanings of abortion; the uneven globalization of new genetic, pharmaceutical, and assisted reproductive technologies; and feminist critiques of a variety of untoward reproductive practices. This breadth—with its explicit move from the “local” to the “global,” from the realm of everyday reproductive practice to international programs and policy making—demonstrates that the notion

of reproductive disruption is productive for examining the meanings of “difference,” the workings of power, the tensions between women’s and men’s reproductive goals, and various structural and cultural constraints on reproductive agency. By expanding the arena of reproductive disruption to include topics such as the nurturing of adopted and disabled children, medical communication, male-female

reproductive negotiation, and the uses and abuses of reproductive technologies around the globe, this volume is likely to move the social science of human reproduction into new spaces. To that end, the volume is divided into two major thematic sections. Part I, “Reproduction and Disruption: Redefining the Contours of Normalcy,” suggests that what “normal reproduction” means at any given place and time is always a discursive product of a hegemonic cultural system. Thus, reproductive disruptions are, in some

senses, produced and reproduced within particular historical and cultural settings. What is “normal” reproduction in one time or place becomes “abnormal” in another. Ultimately, notions of reproductive disruption are continually being produced, challenged, and then reproduced in new forms. The four chapters in this section examine the ways in which cultural notions of “reproductive disruption” are envisioned in the United States. These chapters, which focus on childbirth and maternal mor-

tality, pregnancy loss through miscarriage and stillbirth, neonatal care and salvage of low birth-weight children faced with future disabilities, and the creation of “open” adopted families, suggest that reproductive “normalcy” is constantly being redefined and resisted in the US. Dominant ideas of normal reproduction—for example, in the

Preface x] realm of birth—may create nearly impossible standards for women (as well as men), leading to profound psychological and social suffering over issues of failed identity and reproductive loss. However, the chapters in this section also demonstrate the multiple ways in which individuals in the US retain their agency in the face of hegemonic discourses of normalcy. Indeed, several of the chapters in this section provide concrete recommendations for achieving such redetfinitions and for promoting reproductive agency. Part HU, “Reproduction, Gender, and Biopolitics: Local-Global Inter-

sections and Contestations,” demonstrates the importance of history and politics in defining the parameters of normal reproduction and the ways in which women and men within various global sites and diasporic settings sometimes struggle to redefine those parameters. These chapters examine how political and medical discourses on reproductive rights, liberty, autonomy, services, technologies, and professions are likely to change over time and often take place in complex cultural, legal, and moral settings where specific outcomes are difficult to predict. Thus, the chapters in this section demonstrate that reproduction across the human life cycle—from birth to menopause—is inherently “biopolitical,” involving complex power struggles enacted through the medium of women’s bodies. However, as in the previous section, these chapters also highlight how women (and sometimes men) are actively involved in revising or resisting local biopolitics, thereby challenging the influence of political, economic, and social forces over their reproduction. The focus of this volume on “reproductive disruptions” emerged from a University of Michigan conference by that title, held from 19-22 May 2005, in Ann Arbor. The conference brought together more than 225 social and behavioral scientists from thirty-one countries on six continents. The conference represented the third international effort to convene social and behavioral scientists, as well as scholars in the humanities who study childlessness, adoption, and other forms of reproductive complexity. The first conference, organized in 1999 by Trudie Gerrits and Frank van Balen at the University of Amsterdam, brought together about forty infertility scholars. In 2002, nearly sixty reproductive researchers and clinicians met in Goa, India, in a conference organized by Veena Mulgaonkar. The convergence of these scholars in Ann Arbor bespeaks the grow-

ing importance of reproductive disruption as a field of scholarly inquiry. Indeed, the presence at this third international conference of the “next generation” of young scholars signifies the “cutting-edge” nature of this field of study. The intellectual momentum generated

xii Preface at the conference certainly gives weight to the argument put forward by Ginsburg and Rapp in their seminal volume Conceiving the New World Order: The Global Politics of Reproduction (1995), that reproduc-

tion, in both its biological and social interpretations, must be placed “at the center of social theory” as the very “entry point to the study of social life” (1). Furthermore, Ginsburg and Rapp insist that “reproduction also provides a terrain for imagining new cultural futures and transformations,” often involving “transnational processes that link local and global interests” (2). The theoretical sophistication and global scope of the newest work on reproductive disruption was clearly evident at the conference. There, twenty-four paper panels and a number of new films were presented. This volume represents the outcome of three conference plenary sessions; eight of the plenary speakers, most of them promi-

nent anthropologists of reproduction, contributed their papers in order to form this edited collection. Berghahn Books was a prominent supporter of the conference, and thus we are pleased to be publishing our volume in Berghahn’s path-breaking Fertility, Reproduction and Sexuality series. The University of Michigan deserves a great deal of credit for mak-

ing possible this conference and the resulting book. More than thirty units on campus contributed their support, including travel fellowships to scholars from resource-poor countries.” Particular thanks are owed to the major sponsors of the conference, including the Institute for Research on Women and Gender (IRWG); the Life Sciences, Values, and Society Program; the International Institute; the Office of the Vice President for Research; the School of Public Health; the Horace Rackham Graduate School Dean’s Office; and the Department of Obstetrics and Gynecology. I am especially grateful to the Center for Middle Eastern and North African Studies (CMENAS) for helping to bring nearly a dozen scholars from the Middle Eastern region. The staff of both CMENAS and IRWG provided invaluable support for the conference and this edited volume. My conference co-organizers were also my wonderful intellectual compatriots in IRWG’s adoption, infertility, and gender study group. This reading group helped plan and organize the conference,

in part by selecting the plenary speakers whose papers appear in this volume. Special thanks go to Drs. Nicole Berry and Jessa Leinaweaver, advanced graduate students at the time who also proved to be skilled conference planners. I also want to thank Alissa Surges, my CMENAS editor, who has carefully put the finishing touches on this edited volume.

Preface xili The conference and this edited volume represent high points in my own twenty-year career as a scholar of infertility and assisted reproductive technologies in the Middle East. It is my personal hope that this book will bring the topic of reproduction disruptions to the center of social analysis. Additionally, this book may help us to react, as individuals and as societies, with greater sensitivity to the reproductive disruptions in our midst.

Notes 1. Only one author, Harold Grotevant, is not a professor of anthropology. However, his undergraduate anthropology training is evident in his sophisticated qualitative study of adoption practices in the US. 2. Thanks also go to the Wenner-Gren Foundation for Anthropological Research, which provided travel support for seven such scholars. The conference also received generous corporate support from Serono USA, Organon USA, and Ferring Pharmaceuticals, all manufacturers of infertility medications.

References Ginsburg, Faye D. and Rayna Rapp. 1995. Conceiving the New World Order: The Global Politics of Reproduction. Berkeley: University of California Press.

Rapp, Rayna and Faye Ginsburg. 2001. “Enabling Disability: Rewriting Kinship, Reimaging Citizenship.” Public Culture 13(3): 533-56.

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Introduction

DEFINING WOMEN’S HEALTH:

A DOZEN MESSAGES FROM MORE THAN 150 ETHNOGRAPHIES Marcia C. Inhorn

- recent years, women’s health increasingThe attention in public health circles as well has as inattracted clinical medicine. global HIV/AIDS pandemic has highlighted women’s vulnerability to the

HIV virus, often in areas of the world where women continue to sulfer significantly from reproductively related morbidity and mortality. In Western countries, women’s increasing susceptibility—not just men’s—to chronic lifestyle conditions, such as hypertension and cardiac disease related to smoking and obesity, has become a cause for alarm. Clearly, the increasing attention to women’s health is a positive development. However, the definition of what constitutes “women’s health” has been largely forwarded by the Western biomedical and public health establishments. When clinical concerns, such as assessing the costs and benefits of hormone replacement therapy (HRT), or public health concerns, such as targeting women in international family-planning campaigns, dominate the discursive field of women’s health, the resulting view of women’s health will inevitably reflect the

rather narrow Western professional definitions and interests. Such conceptions may or may not align with the perspectives and opinions of women around the world. Indeed, listening to what women them-

2 Marcia C. Inhorn selves have to say about their health and well-being would seem to be of vital importance to policy making. For the past twenty-five years or so, anthropologists have been listening to women around the globe, documenting health concerns from women’s own perspectives. Through the deeply qualitative tradition of ethnography—one of the greatest hallmarks and gifts of the discipline—anthropologists have come away with rich, if inherently subjective, understandings of women’s lives, including their everyday experiences of illness and health, birth and death, pain and suffering, and occasional joy, which are difficult to capture through any other methodological means. The ethnographic tradition has allowed anthropologists to achieve a unique window into women’s health in both Western and non-Western settings and to produce ethnographies of women’s health that are truly rich and evocative. Indeed, there is an ever-expanding list of such ethnographies of women’s health being written by anthropologists as well as by like-minded ethnographically oriented colleagues in sociology, women’s studies, and related fields. Taken together, these ethnographies of women’s health now form an impressive list, as recorded in the appendix to this chapter. This list includes more than one hundred and fifty volumes,’ with nearly two-thirds of them published since the start of the new millennium. This publishing boom has resulted in a number of award-winning volumes,’ including works by young scholars on such topics as HIV/ AIDS, female sterilization, and violence against women in Brazil;

childbirth in India and Russia; family planning and abortion in Cameroon, Greece, Haiti, Nigeria, and Palestine; and smoking and diabetes among women in marginalized communities in the US. In addition, most of the senior scholars whose chapters are included in this present volume have contributed important books to the list of ethnographies in the appendix. The appendix is divided for heuristic purposes into three sections: ethnographies focusing on the Western world (i.e., North America and Western Europe); ethnographies focusing on the non-Western world (i.e., outside of Euro America); and edited collections comprising primarily ethnographic chapters. It is important to point out that all of the books in the appendix are published in English by West-

ern academic presses and thus ethnographies published by nonWestern presses in languages other than English are not included.’ In this introduction, I attempt to assess some of the major themes of this large body of literature, asking what the ethnographic record on women’s health has contributed to the production of knowledge.

Defining Women’s Health 3 This chapter is not intended as an Annual Review-style literature review, as it would be nearly impossible to summarize all the important themes and findings from this long list of books. Instead, I highlight what I consider to be a dozen of the most important thematic messages about women’s health that have emerged from these 157 ethnographies (Table 1). These themes do not represent an exhaustive list, and several have been highlighted in other reviews (e.g., Ginsburg and Rapp 1991). My point here is to suggest that a specifically ethnographic approach to women’s health leads to a particular set of insights that are important, timely, and quite different from the women’s health research agenda currently being promoted within biomedical and public health circles. Indeed, I hope that this introduction will reach two distinct audiences—audiences that should, however, be in greater conversation with one another. I intend to reach fellow medical anthropologists,

many of whom will find their work listed in the appendix. And I hope that this introduction will also be used in medical anthropology classrooms on both undergraduate and graduate levels, not only as a bibliographic resource for students but as a tool for classroom discussion about the various messages described here. I have provided some primary ethnographic examples for each message, drawing on my own work in Egypt, as well as on a variety of Western and nonWestern ethnographies, many of them older classics I have used quite profitably in my own teaching.* Thus, I intend for this introduction to serve pedagogical purposes in medical anthropology courses and to be used as a bibliographic resource for fellow scholars. For the sake

of brevity, only those references not included in the appendix are Table 1. Defining Women’s Health: A Dozen Messages from 157 Ethnographies

1) The power to define women’s health 2) The reproductive essentialization of women’s lives 3) The cultural construction of women’s bodies 4) The increasing medicalization of women’s lives 5) The increasing biomedical hegemony over women’s health 6) The production of health by women 7) The health-demoting effects of patriarchy 8) The intersectionality of race, class, gender (etc) in women’s health 9) The state intervenes in women’s health 10) The politics of women’s health 11) The importance of women’s local moral worlds 12) The importance of understanding women’s subjectivities

4 Marcia C. Inhorn listed in the bibliography at the end of this chapter. Otherwise, the appendix includes a complete bibliography of works cited in this introduction. In addition, given my own primary affiliation in a school of public health, I intend to reach disciplines beyond the confines of anthropology. This introduction is an attempt to highlight women’s health ethnography in a way that will be easily accessible to nonanthropologists and productive of further cross-disciplinary discussion and debate between anthropology, the health sciences, and health policy. These latter disciplines are the most heavily invested (ideologically and financially) in the major role of defining the domain of women’s health, both domestically and internationally. It is my contention that anthropology has much to offer the health sciences and health policy in defining a women’s health research agenda, primarily in three ways. First, by listening to women through participatory forms of ethnographic research, anthropologists are able to determine women’s own health priorities, which may be missed entirely without such preliminary ethnographic investigation. Although community-based approaches to participatory research are becoming increasingly acknowledged in public-health circles (Khanlou and Peter 2005), the setting of priorities in women’s health still tends to come “from the top down,” as will be examined in Message One of this introduction. Second, anthropologists have been critical proponents of context— namely, that women’s health problems often cannot be separated from the larger social, cultural, economic, and political forces that shape and sometimes constrain women’s lives. Examining macrostructures—irom patriarchy to globalization to the “structural violence” of poverty and political despotism—has been the sine qua non of anthropology in recent years and is clearly reflected in the literature on women’s health and the messages described in this introduction. In understanding women’s health concerns, health scientists and policy makers must take heed of the fact that context does matter— that health research and interventions aimed at changing women’s

behavior must take into account the broader conditions shaping women’s lives and women’s resultant (in)ability to enact healthpromoting changes in their living conditions and actions. Finally, anthropologists are trained in critical inquiry. Thus, in recent years, forceful critiques of unjust conditions and of institutional practices that militate against women’s well-being have been forwarded by ethnographers of women’s health. Indeed, many of the ethnographies listed in the appendix are critical of Western-based

Defining Women’s Health 5 biomedicine in ways to be described below. It is my hope that biomedical researchers and practitioners who read this introduction will be able to reflect dispassionately on anthropologists’ critiques of their field. In my own medical anthropological research on the practices of biomedicine in Egypt (1994, 2003; appendix), I have been quite critical of some forms of health-demoting gynecological practice. Yet, at least some of my Egyptian biomedical colleagues and research “patrons” (2004b) have welcomed such critique, hoping that ethnographic evaluations of the state of Egyptian medicine will lead to needed changes

in the field of obstetrics and gynecology in their country. In summary, anthropology has much to offer both biomedicine and public health in terms of defining problems in women’s health research, contextualization of women’s health problems, with direct relevance to future health interventions, and evaluation of women’s health-care delivery in ways that can lead to new policies and best practices. I believe that the “value added” nature of women’s health ethnography will become apparent in this review to readers from all disciplines and that they might be inspired to examine some of the ethnographic literature cited in the thematic review that follows.

Message One: The Power to Define Women’s Health Women are rarely the ones to set the boundaries of the discussions surrounding the identification and definition of their health problems. Women’s health, as a discursive field, is usually defined by others. Increasingly, in the Western world at least, the boundaries

of the women’s health field have been defined by the relatively powertul biomedical and public health establishments. In the US, the most salient example of biomedical hegemony over the definitional process comes from the National Institutes of Health (NIH), the government agency primarily responsible for funding the health-

related research in both medical and public health schools across the country. In the 1990s, the NIH established the Office for Research on Women’s Health and began, through a series of national meetings, to define a national research agenda. Such an agenda was spelled out in its report, Agenda for Research on Women’s Health for the 21" Century

(2001). Subsequently, the NIH’s coordinating committee on research in women’s health made a series of recommendations regarding research priorities. By the end of 2001, it had published a list of twelve topical priority areas for women’s health research, which would receive special consideration through the NIH funding process.

6 Marcia C. Inhorn These twelve broad NIH research priority areas are spelled out in Table 2 (although the more detailed information under each area is not reproduced in this table). In examining Table 2, it becomes apparent that the NIH has defined women’s health research priorities

in strictly medical and public health terms. For example, the list focuses heavily on discrete physiological processes, organ systems, pathologies, and therapeutic interventions. As such, it reflects a fragmented view of women’s health and women’s bodies. Furthermore, it almost entirely neglects the sociocultural matrix in which women’s

ills develop, including in the context of poverty, patriarchy, and other life stresses. Although “healthy living,” “care giving,” and “qual-

ity of life” are highlighted in two of the priority areas, these are the only real concessions to behavioral research of the kind undertaken in schools of public health. The rest of the research agenda is highly biomedical in detail and in scope. This is not to say that the NIH has not tried to be sensitive to such potential criticisms. In a preface to the list of twelve topical research priorities, the report included “Overarching Approaches for Research on Women’s Health Including Sex/Gender Differences.” It was noted that females across the lifespan and from traditionally underrepresented populations should be included as research subjects, and that research should be multidisciplinary, including basic, translational, behavioral, and clinical research, especially on conditions that may be chronic and/or multisystemic in nature. However, the research agenda was clearly not a reflection of what American women perceive as Table 2. A Dozen Research Priorities in Women’s Health: The Agenda of the National Institutes of Health

1) Sex differences in health and disease at the genetic, molecular, cellular, and functional levels 2) Healthy living and the prevention of chronic disorders 3) Interdisciplinary approaches to chronic multi-systemic diseases with multi-factorial etiology 4) Sex/gender differences in response to therapeutic interventions 5) Mental health and addictive disorders

6) Reproductive health 7) Infections, including sexually transmitted diseases 8) Care-giving and health-related quality of life issues

9) Cancer 10) Neurobiology 11) Complementary and alternative medicines and dietary supplements 12) Specific organ systems

Defining Women’s Health 7 their major health problems. Although various women’s health lobbying groups on specific diseases (e.g., breast cancer) may have influenced the research agenda, the list of research priorities was clearly a “top down” conception—the creation of a group of powertul biomedical and public health “experts” who laid out a research agenda designed for each other to follow. Numerous ethnographic studies from around the globe document the fact that women themselves rarely define their health problems

in the same ways that the biomedical community defines them. To take one salient example, the Centers for Disease Control and Prevention (CDC), the major public health agency in the US, has been concerned with prematurity and low birth weight among pregnant African American women and their offspring. In recent years, the CDC has become convinced of the importance of an infectious etiology to this problem, largely through a condition called bacterial vaginosis (BV). The CDC is currently funding major research initiatives

on BV, hoping to eventually lead to interventions among high-risk populations. But, as shown in Leith Mullings and Alaka Wali’s ethnographic study (see appendix)—which was also funded by the CDC,

to its credit—BV was not the issue that concerned at-risk pregnant women in the African American community of Harlem. Rather, numerous life stresses impacted their pregnancies and included, among other things, inadequate housing, community violence, exhausting, low-wage labor, disrespectful interactions in public health-care settings, lack of social support from partners, lack of access to healthy foods, and toxic-waste dumping in the community. None of the women in this study were concerned with BV; rather, the pathologies affecting their bodies and lives were largely structural and beyond their control. Thus, Mullings and Wali’s ethnography forces us to consider how an overemphasis on the microbiological—in this case, BV—has obscured the underlying determinants of reproductive risk, which are macrostructural in nature.

Message Two: The Reproductive Essentialization of Women’s Lives

The lack of understanding of so many dimensions of women’s health as women themselves understand them stems, in large part, from the fact that women are still essentialized as reproducers. In other words,

their most essential characteristic is seen as their ability to reproduce, to give birth, to mother their children, to reproduce the gen-

8 Marcia C. Inhorn erations. Although one could argue that the overwhelming focus on women and their reproduction is empowering—given the centrality of reproduction in women’s lives and its function as a funda-

mental source of women’s power in many societies around the globe—essentializing characterizations of women that continue to tie them to the realm of reproduction are both unfortunate and potentially constraining. As generations of feminist scholars, including many of the feminist anthropologists listed in the appendix, have pointed out, being thought of only as a wife—mother certainly has its limitations in that other aspects of women’s lives, such as work, activism, leadership, and worship, are ignored and women’s capabilities in these various realms unrecognized. In the broad field of women’s health, the unfortunate replication of this view of women as reproducers is clearly seen. The medical and public-health fields devoted to women’s health—namely, obstetrics-

gynecology and maternal and child health—literally target women as reproducers or potential reproducers. The field of obstetricsgynecology is devoted exclusively to women’s reproductive organs and complaints and to the processes of pregnancy and childbirth. Other kinds of women’s health issues are to be handled elsewhere, although for many women around the world, reproductive health services are the only point of contact for health care delivery. Similarly, in the area of global public health, almost all of the ma-

jor initiatives in the past three decades have focused on women as reproducers and as mothers to their children. This would include, for example, the Child Survival Initiative (launched in the early 1980s), which focused on women’s responsibility for saving their children from diarrhea, malnutrition, acute respiratory infections, and other life-threatening conditions; the Safe Motherhood Initiative (launched in the late 1980s), which, despite its claim to “put back the M” in maternal and child health, has resulted in a narrow focus on maternal mortality from obstetric emergencies and unsafe abortion; and the Reproductive Health Initiative (launched in the mid 1990s), which continues to focus on reproduction, although broadly defined. Even

the Global Programme on AIDS, which has dominated the global public health landscape as the epidemic grows in many countries, is concerned with women as mothers and as potential infectors of their children through childbirth and breastfeeding. Furthermore, some of women’s most serious and troublesome reproductive health conditions, such as cervical cancer, pelvic inflammatory disease and accompanying infertility, miscarriage and stillbirth, fistulas, uterine prolapses, and pain during sexual intercourse,

Defining Women’s Health 9 continue to be relatively ignored in these initiatives. In other words, the reproductive morbidities that women themselves may deem most problematic—the cause of their “silent suffering” (Khattab, Younis,

and Zurayk 1999)—are not necessarily the issues that have been prioritized in any of these public health campaigns. But a question of prioritization also plagues anthropology. Indeed,

one of the disappointing lessons clearly emerging from the ethnographic literature is that anthropologists, too, have unwittingly participated in this reproductive essentialization of women by significantly overfocusing on the realm of reproduction. Fully three-quarters of the

books on this list—including my own books on infertility and new reproductive technologies in Egypt (1994, 1996, 2003, in appendix)— are primarily devoted to reproduction and the reproductive life cycle itself, women’s reproductive trials and tribulations, the joys and travails of motherhood, and the uses of various forms of reproductive technologies as applied to women’s bodies. If the books on HIV/AIDS, female circumcision, domestic violence,

and women as healers were included in this category—given their simultaneous focus on reproduction—it would be fair to conclude that

nearly 90 percent of what has been written by anthropologists in the area of women’s health has focused on reproduction. It is easy to speculate why this might be the case. On the positive side, women scholars may be attracted to a fundamental aspect of female experience not shared by men. On the negative side, this may reflect an unfortunate form of professional solipsism among reproductive-aged female anthropologists,’ as well as the “ghetto-ization” of women anthropologists into a topical area still not privileged in the maledominated anthropological academy. Indeed, the unwitting ethnographic essentialization of women as reproducers is not true for men. Men’s reproductive capacities and problems (Inhorn 2002, 2003, 2004a, 2006) and their positive contributions to reproductive health and parenting (Dudgeon and Inhorn 2003, 2004) are largely ignored in the ethnographies as well as in the global public health initiatives, which have failed to take seriously men and their reproductive health problems and concerns. To wit, men continue to be conceived of as undertaking productive labor in the public domain, whereas women are conceived of as undertaking reproductive labor in the private domain—a public-private divide that has been increasingly problematized by many feminist scholars and anthropologists. Having said that, the ethnographies of women’s health represented in the appendix quite unfortunately and stunningly reify this divide

10 Marcia C. Inhorn by leaving men out altogether from the vast majority of ethnographic discussions of reproduction. This critical lacuna is just beginning to be overcome in a number of the list’s recent ethnographies that focus on men as fathers. Indeed, this is an area “crying out” for future

ethnographic effort and sensitivity, to put the “missing men” back into the anthropology of reproduction (Browner 2000; Dudgeon and Inhorn 2003, 2004). It is also fair to conclude, however, that some of the most brilliant—and best-selling—ethnographies in anthropology have come from within the domain of the anthropology of women’s reproduction. What makes these books effective and award-winning is that they take readers beyond the realm of reproduction to expose the ways in which reproduction is always embedded within larger social, cultural, economic, and political relations and forces. Although a significant number of books in the appendix meet this criterion, it is worth pointing to three classics: Rayna Rapp’s Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America (1999), Nancy Scheper-Hughes’s Death Without Weeping: The Violence of Everyday Life in Brazil (1992), and Margaret Lock’s Encounters with Aging: Mythologies of Menopause in Japan and North America (1993). Rapp’s Testing Women, Testing the Fetus documents more than ten

years’ worth of extensive ethnographic research conducted in New York City hospitals, genetic counseling and testing centers, and genetics laboratories themselves. Rapp’s book focuses on the difficult decisions made by pregnant women from various ethnic, religious, and economic backgrounds as they either opt or are advised by clinicians and genetic counselors to undergo amniocentesis to detect genetic anomalies in their fetuses. Although the scientific field of genetics is burgeoning with excitement, the intent of Rapp’s book is to show how women who are expected to use new genetic tests during pregnancy are put into the difficult position of being “moral pioneers”—forced to make often heart-wrenching moral decisions about what constitutes an acceptable human life. Whereas Rapp’s book focuses on decisions about bringing babies into the world, Nancy Scheper-Hughes’s Death Without Weeping asks

us to consider decisions about ending babies’ lives, through mothers’ sometimes fatal neglect of their ill and malnourished infants. Based on a long-term relationship with her informants—tirst as a Peace Corps volunteer and activist and later as a professor of anthropology—Scheper-Hughes documents the grinding poverty, labor exploitation, and everyday violence that plague a shantytown

Defining Women’s Health 11 community in the postcolonial, plantation economy of northeastern Brazil. Amid this backdrop of abject poverty and fragile social ties, poor shantytown women continue to birth large numbers of infants, many of whom never make it to childhood. Exploring the apparent emotional apathy—the “death without weeping”—that shantytown mothers display when their infants die, Scheper-Hughes again reveals the difficult moral decision making, or what she calls the “lifeboat ethics,” of mothers who must determine which infants are robust and hence worth saving. Those who are not deemed worthy receive less care and attention from their mothers and in most instances live brief lives on earth, only to be resurrected as protective angels in the local belief system. In exploring the inevitability of infant mortality, Scheper-Hughes also explores the controversial terrain—given the Catholic Church’s position on life from the moment of conception— of when a person really becomes a person and how personification processes and trajectories may take many cultural forms, including ones that are more adaptive to conditions of high infant mortality. Just as Scheper-Hughes’s book takes us into the heart of Brazilian shantytown society, Margaret Lock takes us on a rich ethnographic

journey into the lives of middle-aged Japanese women, many of whom grew up during the difficult years surrounding World War II.

Basing her study on in-depth interviews with more than one hundred Japanese women from both urban and rural backgrounds, Lock asks us to consider a remarkable finding: that most of the Japanese women in her study have undergone a “change of life” bearing no

marked resemblance to the throes and woes of menopause that women in North America are expected—and expect themselves—to experience. Asking why this is so—why hot flashes and night sweats are not part of a universal menopausal symptomatology—Lock proposes that “local biology” may be the answer. Namely, Lock argues that the reproductive endocrinology of menopause is necessarily in-

fluenced by local cultural factors, be they diets rich in soy-based phytoestrogens or social mores condoning stoicism and graceful aging. In her constant attention to cross-cultural comparison, Lock argues that women’s aging in North America has been pathologized such that menopause is now viewed by experts as a “deficiency disease” in need of therapeutic intervention. Thus, a North American woman’s experience of the bodily changes of menopause will nec-

essarily be different from those of women in Japan, whose “encounters with aging” take very different social, cultural, and somatic forms.

12 Marcia C. Inhorn Message Three: The Cultural Construction of Women’s Bodies Lock’s seminal ethnography provides compelling evidence that the body itself is a cultural construction; in other words, the ways we conceive of the body, its internal processes, and its ideal configuration are products of our culture and history and thus can be seen to vary through space and through time. In postmodern terms, the body itself can be read as a text on which the most fundamental val-

ues of a society are inscribed. The work of French social theorist Michel Foucault (1977, 1978) certainly forwarded this view. He doc-

umented in excruciating detail some of the ways human bodies in prisons, hospitals, and asylums are disciplined, punished, and in other ways manipulated as a means of social and ideological control. Calling this “biopower,” Foucault argued that human societies manage

(and sometimes violate) human bodies in ways that create politically docile citizens; one only need think of various atrocities in Iraq to understand the power of Foucault’s important insight. As much as Foucault’s work has been rightfully hailed by Western scholars, it also suffered from a fundamental “gender blindness”; to wit, Foucault himself did not distinguish between or account for

the ways in which male and female bodies are treated differently through societies’ disciplinary mechanisms. To understand the body in these gendered terms, feminist revisionists have undertaken multiple studies, including historical, literary, and ethnographic ones, to reveal how Western notions such as “femininity,” “efficiency,” “control,” and “discipline” are both embodied and resisted by women. In the anthropology of the body, the scholar who paved the way for ethnographers of women’s health was Emily Martin, whose first book, The Woman in the Body: A Cultural Analysis of Reproduction, now

reissued several times (1987, 1992, 2001, in appendix), provides a brilliant Marxist feminist critique of the ways women’s bodies—and particularly their reproductive bodies—have been disciplined in twentieth-century postindustrial US society. Basing her analysis on a large-scale ethnographic study of women of multiple classes and ethnicities in Baltimore, Maryland, Martin interrogates how women in the US view their reproductive processes (particularly menstruation, childbirth, and menopause) and the language and metaphors they use to describe them. Finding multiple examples of negative bodily imagery, she traces these to US capitalist notions of “production” and “productivity” and the penetration of these dominating metaphors in the biomedical

Defining Women’s Health 13 textbooks and practices surrounding reproduction. Thus, women’s childbirth is defined as “labor,” to be timed, managed, and “delivered” into the hands of male obstetricians. Martin’s critique of this production metaphor—as well as the “failed production” metaphor used to describe both menstruation and menopause—suggests the importance of analyzing language, including who produces this language and how it is used by powerful constituencies (e.g., biomedicine) to control women. Her book also points to women’s resistance. Although women’s bodies are the sites of social inscription, bodily metaphors can be changed for the better by women themselves, leading to new bodily attitudes, practices, and social histories. Martin’s pathbreaking anthropological analysis of “the woman in the body” clearly influenced the thinking of many future anthropologists working in this field. Over the past decade, there has been much good “body work” published by anthropologists. Most of this work incorporates women’s own voices, their experiences of “living in their bodies,” their perceptions of their own bodily anatomy and physiology, their reflections on body image, and their attempts to resist various forms of bodily coercion. Indeed, the ethnographies listed in the

appendix take us on a veritable ethnographic journey of women’s bodies cross-culturally, particularly in the reproductive realm. But it is important to point out that some of the best body work published by anthropologists in recent years has nothing to do with reproduction. For example, excellent ethnographies on teenage dieting, breast augmentation and plastic surgery, and living with disability can be found in the appendix and attest to a much-needed “opening up” of women’s health ethnography to topics beyond reproduction.

Message Four: The Increasing Medicalization of Women’s Lives

One of the positive results of the anthropological overfocus on reproduction is that it reveals another important message: women’s lives,

and especially their reproductive lives, have become increasingly medicalized over time. Medicalization is the term used to describe the biomedical tendency to pathologize otherwise normal bodily processes and states. Such pathologization leads to incumbent medical management. To take but a few examples, many of the normal stages of a woman’s reproductive life cycle, from menarche to menopause, have been pathologized, or turned from a normal stage or state into a “disease” or “condition” to be managed through biomedical inter-

14 Marcia C. Inhorn vention. Such medicalization can be detected in the creation of such disease categories as “premenstrual syndrome,” “fibrocystic breast disease,” “estrogen deficiency disorder,” or the moral “dis-ease” known in the US as “teen pregnancy.” Whether women themselves view these issues as diseases is open to question and must be subjected to ethnographic inquiry. For example, the “problem” of teen pregnancy—which has received a great

deal of biomedical and public health attention in the US in recent years—would not be considered a problem in many parts of the world. Indeed, even within the US, childbearing during the teenage years is normative and socially valued among some ethnic minority populations, as shown in a number of thought-provoking ethnographies on this subject (see appendix). Because medicalization is part and parcel of women’s health experiences now in many parts of the globe, anthropologists have been interested in examining such medicalization processes, often spelling them out in graphic detail. A number of landmark ethnographies have been published on the medicalization of women’s reproduction in both Western and non-Western countries. Two of these, one from the US and one from Africa, provide particularly compelling examples. The first is Robbie Davis-Floyd’s Birth as an American Rite of Passage (1992, in appendix), which, like Martin’s book, was recently updated and reissued in 2004, because of its enduring value and popularity as a classroom text. In the book, Davis-

Floyd describes the various inane and sometimes iatrogenic, or health-demoting rituals of hospital birth, in a country where nearly 99 percent of US women give birth in highly technological hospital environments. Calling this the “technocratic model” of birth—in which authoritative knowledge of childbirth is seen to be held by obstetricians rather than birthing women—Davis-Floyd is able to show how childbirth becomes like a medical disease, to be managed with invasive technologies and mystifying medical rituals every step of the way. Birth technologies and rituals such as the “pit drip,” episiotomies, epidurals, amniotomies, electronic fetal monitors, and forceps obscure the possibility that birth could ever again be thought

of in the US as a nonmedical event, to be managed without high technology by midwives in women’s homes as it has been throughout most of human history. To do so would wrest control of birth

from the realm of biomedicine, which has powertul professional and economic incentives to dominate this lucrative domain. Similarly, medical anthropologist and historian Nancy Rose Hunt introduces us to similar processes of birth medicalization in the trou-

Defining Women’s Health 15 bled postcolonial society of what was once called Zaire (now Democratic Republic of the Congo). A Colonial Lexicon of Birth Ritual, Medicalization, and Mobility in the Congo (1999, in appendix) is a fascinating

historical and ethnographic journey of changing birth practices, as remembered in part by the elderly Congolese midwives who were coopted by missionary doctors to bring birthing women to missionary hospitals. As with Davis-Floyd’s book, A Colonial Lexicon explores the various “technologies of birth” such as forceps, injections, and “takehome’ gifts of baby clothes and antiseptic soap that became part of the very lexicon of the colonial project in Africa. Hunt ultimately suggests

that medicalization and the fascination with birthing technology went hand in hand with colonial “modernization” projects in Central Africa. When these technologies were no longer made available during periods of postcolonial political decline (e.g., during the reversals in all forms of health service delivery under the repressive, postcolonial regime of Mobutu Sese Seko), they become objects of considerable nostalgia among the elderly informants interviewed by Hunt. These ethnographies from two very different parts of the world

highlight the global transformations in birthing—and particularly the explicit move from home to hospital—that now can be found in many global sites. Furthermore, these ethnographies bespeak biomedicine’s fascination with technology. Sometimes described in medical anthropology as the “technological imperative” of biomedicine, technology is a major part of the biomedical mandate. Technology is sometimes used simply because it exists, and it eventually becomes routinized in various hospital rituals, as shown in both of the aforementioned ethnographies. But the question remains: Do we truly need all of this technology? And is this medical management really improving women’s lives? For many of the anthropologists and other feminist scholars whose books are listed in the appendix, the conclusion has been “no.” Although biomedicine clearly has the

power to heal and some technologies are, indeed, lifesaving, the technological excesses of biomedicine in the face of ongoing medicalization require constant surveillance and vigilance to prevent unnecessary medical control over women’s lives.

Message Five: The Increasing Biomedical Hegemony over Women’s Health This leads to the fifth related message: namely, at the dawn of the twenty-first century, biomedicine has exerted its hegemony over

16 Marcia C. Inhorn women’s health and health care in many (if not all) parts of the world. In other words, biomedicine is now the default and most prestigious form of women’s health care, replacing many earlier systems of healing. How did this biomedical hegemony come about? The answer lies, in part, in the very notion of hegemony. According to Italian social theorist Antonio Gramsci (1971), hegemony is domination achieved through consent rather than by force. In terms of biomedical hegemony over women’s health, physicians rarely have forced women to accept them as their primary medical practitioners. Such consent has come from women who have actively participated in this process of medicalization and have often demonstrated their desire for cutting-edge biomedical technologies. To take but one example, epidural anesthesia in childbirth would not exist were it not for women demanding more effective forms of analgesia that would also allow them to remain awake (or, alternatively, take a comfortable, pain-free nap) during the birthing process.

But just as women have consented to hegemonic domination by biomedicine, they have also displayed counterhegemonic resistance in many cases. In the US, an excellent example of hegemonycounterhegemony can be found in the return of the midwifery and natural childbirth movement, following consolidation of power by an all-male obstetrics-gynecology profession. Indeed, in the nineteenth century, women’s health care was wrested from the hands of women healers—including midwives, spiritualists, and other lay-women’s healers—to create a lucrative obstetrics-gynecology profession controlled by men (Banks 1999; Ehrenreich and English 1978). Such biomedical hegemony was achieved in part by force—tor example, by making lay midwifery practice illegal in many states. But this switch from midwifery to obstetrics-gynecology was also achieved by consent, as birthing women became convinced that biomedicine had something useful to offer them. The total domination of childbirth by male physicians began to change in the 1970s, which, not surprisingly, coincided with the second wave of feminism in the US and the publication of the definitely counterhegemonic text Our Bodies, Ourselves (1973). An alternative

birthing movement was formed, encouraging partner-assisted, intervention-free, “natural” childbirth, assistance by midwives rather

than obstetricians, and birth at home rather than in hospitals. Although today the number of women choosing these alternatives is still relatively small, the growth of this movement over the past thirty years bespeaks both women’s health activism and resistance to biomedical hegemony (Morgen 2002).

Defining Women’s Health 17 Similar resistance to the medicalization of birth can be found else-

where around the globe. For example, as Carolyn Fishel Sargent shows in her book Maternity, Medicine, and Power: Reproductive Deci-

sions in Urban Benin (1989, in appendix),° rural Bariba (Baatombu) women in the West African country of Benin have strongly resisted government efforts to medicalize childbirth. Women there idealize solitary birth, in which a woman, demonstrating her courage, delivers alone and calls for assistance only in cutting the umbilical cord after birth. In the event of a problematic labor, older women in the family or women specializing in midwifery in the community assist in the delivery. Birth is defined as an event of ritual significance and potential mystical danger. Thus, a woman’s capacity to confront these risks alone is highly valued and is a major factor behind rural resistance to hospital delivery. In spite of government pressures and the administration of fines in some regions, rural women were continuing to resist delivery in maternity clinics as of the late 1990s, when

Sargent returned for follow-up fieldwork. However, most urban women were delivering in the hospital to comply with government

regulations and to demonstrate their modernity by undertaking medicalized hospital births.

This global movement of birth from home to hospital does not guarantee that births will be safe. Plagued by Third World shortages of electricity, supplies, medications, aseptic conditions, and qualified personnel, safe hospital births cannot always be guaranteed. Indeed, the negative side of biomedical hegemony is that it may be healthdemoting in some cases. This may be particularly true in the reproductive realm, where women are most likely to interact with biomedicine and where many of the technological excesses of biomedicine are to be found. An example of this can be seen in the treatment of infertility. As I have shown in Quest for Conception (1994), poor, infertile Egyptian women are faced with a dizzying array of etiological, diagnostic, and therapeutic possibilities both “ethnogynecological” and “biogyneco-

logical” in nature. Numerous types of women healers in the poor urban communities of Egypt attempt to help infertile women become

pregnant; however, their services are entirely ignored by the biomedical establishment and the Ministry of Health, who see them as an embarrassing anachronism. Instead, biomedical gynecologists claim to offer superior infertility services to Egyptian women whose female family members (especially

their mothers-in-law) often convince them to try these therapies. However, many of the so-called biomedical therapies for infertility

18 Marcia C. Inhorn offered to poor women—such as tubal insufflation to purportedly “blow open” blocked fallopian tubes, or cervical electrocautery to supposedly “burn off” cervical erosions—are, in fact, irrational, obsolete, iatrogenic, and even life-threatening procedures. Such outdated gynecological practices used on infertile women’s bodies can be found elsewhere around the globe (Inhorn and van Balen 2002, in appendix), suggesting that biomedical infertility treatment may be suboptimal in many non-Western countries. Indeed, the ways in which Western biomedicine is—and is not—practiced in non-Western places requires considerable interrogation. This is an exercise of particular relevance to medical anthropology, one that requires signiticantly more attention across cultural fields.

Message Six: The Production of Health by Women In the Western world, medical anthropology has been finely attuned to the excesses of biomedicine because of its insistence on the cri-

tique of Western biomedicine as a cultural system in and of itself (Lindenbaum and Lock 1993; Lock and Gordon 1988). Yet medical anthropology has its historical roots in the study of non-Western alternative medical traditions, or so-called ethnomedicines, which still exist in most societies around the globe (Nichter 1992). Many eth-

nographers who study ethnomedicine have documented the ways in which women around the world “produce” health, often through their formal and informal roles as traditional healers. A significant number of the ethnographies listed in the appendix document the important role of traditional midwives in their communities, especially in the non-Western countries. However, some of these ethnographies also point to other powertlul healing roles played by women.

One of the richest and most evocative of these books is Janice Boddy’s Wombs and Alien Spirits: Women, Men, and the Zar Cult in North-

ern Sudan (1989, in appendix). Based on nearly two years of ethno-

graphic fieldwork in a Muslim village in northern Sudan, Boddy takes us into the lives of women who participate in the local spirit possession cult known as the zar. The zar caters to reproductively troubled women who seek an outlet in the cathartic trances and exhilarating performances staged by the zar leaders. Indeed, tangible power lies with those women who lead the zar. As spiritist healers, they are experts at invoking the spirits of possession and making their demands known, often in ways empowering to other women. Thus, Wombs and Alien Spirits takes us into a moral universe where women

healers are significant social actors. Through their healing trances

Defining Women’s Health 19 and spirit invocation, they help other women make sense of their dis-

rupted reproductive trajectories and resist their objectification and subordination as less valued members of their own society. Women help other women not only as professional healers but as members of families and communities. Indeed, women do a tremendous amount of routine “health work,” which rarely receives proper acknowledgment for its importance. In medical anthropology, the term “household production of health” has been used to designate the ways in which women work within their households to produce healthy family members, especially children and the elderly. The household production of health is sometimes linked to “positive deviance,” or the fact that women often are able to achieve very healthy pregnancies, deliveries, and babies, even under dire conditions of poverty and social deprivation. For example, in Birth on the Threshold: Childbirth and Modernity in South India, Cecilia Van Hollen (2003, in appendix) documents the elaborate cimantan ceremonies in Tamil Nadu, India, which are designed to honor and care for pregnant women during the final month of gestation. According to Van Hollen, it is considered extremely important to satisfy a pregnant woman ’s cravings, to “ensure a problem-

free delivery and the well-being of mother and child” (87). Thus, women in the family direct considerable expense and effort toward pregnant women in the household. Indeed, Van Hollen argues that births occurring literally “on the threshold” in Tamil Nadu homes may, in fact, be safer than hospital births characterized by excessive doses of pitocin and even physical violence on the part of deliveryroom staff. Women’s household production of health may be a form of counterhegemony to biomedicine; namely, women seek alternatives when biomedicine is seen as unappealing or has failed them. Furthermore, in some parts of the world, women may be forced to heal themselves and their family members, either because they have so few other options for accessible and effective health care or because they are treated very badly under the patriarchal conditions of health care

found in many parts of the world, as clearly exemplified in Van Hollen’s compelling ethnography.

Message Seven: The Health-Demoting Effects of Patriarchy Another major message from the ethnographies of women’s health is that patriarchy can be health-demoting, whether it be the “micro-

20 Marcia C. Inhorn patriarchy” of authoritarian doctor-patient relationships found in many biomedical settings or the “macropatriarchy” of gender oppression and its ill effects on women’s health. Patriarchy has been defined in many ways—trom patriarchy writ small on the level of the family to patriarchy writ large on the level of social institutions. In feminist literature, patriarchy is often broadly defined as gender oppression—or the domination of women by men—and is sometimes portrayed as being universal (everywhere, all the time). In women’s health literature, a less universalizing definition of patriarchy is often forwarded—namely, gender discrimination or gender bias in health care research or delivery (Sargent and Brettell 1995, in appendix). In my book Infertility and Patriarchy: The Cultural Politics of Gender and Family Life in Egypt (1996, in appendix), I offer a general defini-

tion of patriarchy that is multileveled and summarized in Table 3. However, in my view, general definitions of patriarchy must also be locally situated; patriarchy necessarily has local manifestations that will vary across cultures and through time. In Infertility and Patriarchy,

I describe how, in the poor urban communities of Egypt, infertile women “live” patriarchy each and every day through interactions with their husbands, in-laws, and community members. Husbands may threaten to leave infertile wives (although most do not), and mothers-in-law may torment infertile daughters-in-law (and most do). Thus, patriarchy in urban Egyptian culture has both gendered and aged dimensions. Women “buy into” patriarchy as they age, exerting increasing power and control over junior women in the household. By focusing on the ways in which patriarchy operates at many levels of women’s lives in both inter- and intragender forms, we come Table 3. Patriarchy Defined

Relations of relative power and authority of males over females, which are:

1) learned through gender socialization within the family, 2) manifested in both inter- and intragender interactions within the family and other interpersonal milieus, 3) legitimized through deeply engrained, pervasive ideologies of inherent male superiority and heterosexist privilege, and 4) institutionalized on many societal levels (legal, political, economic, educational, religious, and so on) Source: Inhorn 1996

Defining Women’s Health 21 to understand the very health-demoting consequences of gender oppression. Salient examples in women’s health would include the nutritional neglect of girls and women in many parts of the world, leading to malnutrition, anemia, and excess female mortality; the

violence perpetrated against girls and women, in forms that are physical, emotional, and sexual in nature; and women’s inability to negotiate safe sex in an era when women are the fastest growing segment of new HIV/AIDS cases.

We now have some incisive ethnographies demonstrating the health-demoting effects of patriarchy. One of the most chilling is Elisabeth Croll’s Endangered Daughters: Discrimination and Development

in Asia (2000, in appendix). That millions of “missing girls” were never born or that they died as a result of son preference-daughter discrimination in India, China, and several other Asian countries is documented in Croll’s sweeping, comparative study. Drawing equally on demographic and local ethnographic data, Croll powerfully demonstrates that discrimination against daughters, as manifested in excessive female mortality before birth (through ultrasound-assisted,

sex-selective feticide), at birth, and in infancy and childhood, has continued to rise, even with significant economic and educational improvements in many Asian countries. According to Croll, the reasons for son preference accompanied by active daughter discrimination are manifold and culturally complex. In India and China, they include, among other things, notions of filial piety and the obliga-

tion of sons, not daughters, to worship ancestors and carry on the family line; virilocal marriage patterns, where sons remain within the family but daughters marry “out,” making them “temporary visitors” in their natal households; and the perceived economic value of sons (in agricultural work, family businesses, and old-age support of parents) and concomitant perceived economic burden of daughters, especially in India, where an oppressive dowry system has led to a highly publicized spate of dowry suicides and homicides. Croll shows how the perceived benefits of sons—and the perceived disadvantages of daughters, especially second and “higher-order” ones—have led to a cruel “culture of gender” rife with both overt and covert daughter discrimination. Clearly, this is one example of patriarchy at its worst; however, the term “patriarchy” or the feminist analysis that might surround this idea are never introduced in Croll’s demographic—ethnographic text. This is not uncommon in the eth-

nographies listed in the appendix. Although many of the authors clearly have been influenced by feminist writings and frameworks, they may be reluctant to introduce the polemics and ideologies of fem-

22 Marcia C. Inhorn inism in their otherwise politically “neutral” ethnographies. Furthermore, they may be criticized if they attempt such a feminist framing. For example, with the publication of my book Infertility and Patriarchy,

conservative US social commentator Daniel Pipes wrote in a review, “One warning: As the title suggests, Inhorn packages her excellent

analysis within an envelope of predictable and tedious feminism, full of ‘gendered’ this and ‘patriarchal’ that. Fortunately, the envelope is easily removed, leaving a gem of a study within” (2002). Contrary to Pipes’ assertions, we need more examples of feministinformed, women’s health scholarship in which discussions of patriarchy are framed around the empirical realities. Although the actual lived experiences of patriarchy are demonstrated in many of the ethnographies listed in the appendix, we need more ethnographic texts that also successfully theorize the health-demoting effects of patriarchy in women’s lives.

Message Eight: The Intersectionality of Race, Class, Gender (etc.) in Women’s Health In addition, we need more ethnographic texts that explore the “intersectionality” of various forms of oppression in women’s lives, be it oppression based on gender, race, class, age, nation, religion, sexual orientation, disability, or appearance (Schulz and Mullings 2006, in appendix). As black feminist theorists have pointed out (Collins 1991; Mullings 1997), multiple forms of oppression may intersect in women’s lives, and these forms of oppression are not merely additive. To take but one example, for poor women of color in the US, being black and being poor may represent more potent forms of oppression than being women in a male-dominated society (although patriarchy, too, may take its toll on black women’s lives) (Mullings 1997). Thus, the term “intersectionality” has been coined to highlight the interlocking nature of various forms of oppression, resulting

in the need to study the dynamics and health effects of oppression through multiple lenses (Krieger et al. 1993; Schulz and Mullings 2006).

Fortunately, we are beginning to understand some of these oppressive intersections in the lives of poor women of color in the US,

through a rich ethnographic literature on the health consequences of poverty in minority communities. Unfortunately, these are the very communities where the AIDS epidemic has hit hardest; thus, many of the ethnographies in this category focus on the overwhelm-

Defining Women’s Health 23 ing odds stacked against poor minority women in the midst of a terrifying epidemic. Beginning with the publication of the award-winning volume Women, Poverty, and AIDS: Sex, Drugs and Structural Violence

(Farmer, Connors, and Simmons 1996, in appendix), which foregrounded the role of poverty as the major risk factor for women’s contraction of the HIV virus, several ethnographers, including Renee White (1999), Elisa Sobo (1995), and Claire Sterk (1999, 2000)—all in the appendix—have documented the insidious ways in which race

and class intersect in inner-city ghetto communities to make HIV risk-reduction difficult, if not impossible, for women. In her book Putting Risk in Perspective: Black Teenage Lives in the Era

of AIDS, White shows that poor, black teenaged girls in inner-city New Haven, Connecticut, enter into relationships with older men— thereby becoming pregnant in many cases and sometimes contracting HIV—because of structural factors forcing poor black youth into early maturity and adulthood. According to White, teenage initiation into early sexual activity is linked to economic uncertainties (and the material benefits of having an older boyfriend), poor career opportunities, single-parent households lacking effective role models, and less concern for the future in communities riddled by violence and poverty. Thus, becoming pregnant is a way of hastening adulthood and social prestige among lower-class girls, who are under significant economic and social pressure to become adults. (This finding is repeated in the study by Dodson [1998, in appendix], who worked with girls from a variety of racial backgrounds in poor neighborhoods of Boston.)

Working with adult black women in inner-city Cleveland, Elisa Sobo argues in Choosing Unsafe Sex: AIDS-Risk Denial among Disadvan-

taged Women that poor women are not forced into unsafe sex out of economic necessity (given that most of these women are entirely seltsupporting). Rather, desires for love and monogamy lead women to overestimate their partners’ faithfulness and HIV-negative status and to underestimate their own need for condoms in supposedly monogamous relationships. Because of condoms’ popular association with infidelity and disease, the use of condoms could interfere with the maintenance of loving relationships, a risk that few women are willing to take. Whereas Sobo’s book examines women’s “AIDS risk-denial” in the context of loving male-female relationships, Claire Sterk’s work in both the New York City area and Atlanta, Georgia, provides only sobering examples of male exploitation of women. In her studies,

men introduce women to drugs, force them to work as prostitutes

24 Marcia C. Inhorn to support their own drug habits, and, in many cases, rape and otherwise abuse them as pimps, johns, and drug-addled boyfriends. Indeed, the health-demoting effects of patriarchy, poverty, and racism in women’s lives truly converge in Sterk’s book Fast Lives: Women Who Use Crack Cocaine (1999). Taking great personal risks as an ethnogra-

pher, Sterk documents the crack cocaine epidemic in the poor innercity neighborhoods of Atlanta and the effects of this epidemic on the unfortunate women caught up in its midst. In Fast Lives, Sterk shows that staying out of the drug culture is difficult for many women, especially as low-priced rocks of crack cocaine have become abundantly available in poor neighborhoods. Most tragically, even middle-aged grandmothers who carry the emotional and economic responsibility for their grandchildren have become desperate “crack whores” (whom Sterk prefers to call “struggling rookies”). After making the mistake of trying their own daughters’ crack pipes, these older women develop terrible addictions and must

then perform humiliating and inherently unsafe sexual acts with other crack addicts to satisfy their crack cravings. Although Sterk’s book is truly painful to read, it also serves to promote empathy for a group of women who have been utterly socially marginalized (and victim-blamed for their own drug problems) by mainstream US society. Furthermore, it suggests solutions for woman-centered drug rehabilitation programs that allow women to live in treatment with their children, as most of these women still love and try to care for their family members. Indeed, Sterk goes so far as to suggest that the decriminalization and legalization of drugs may serve to stem the tide of illegal drug trafficking that plagues poor communities in the US. But to do so, the US government would have to take an entirely different approach to its War on Drugs, which currently emphasizes victim-blaming and the punishment and imprisonment of individuals for drug possession and dealing.

Message Nine: The State Intervenes in Women’s Health As with the War on Drugs example, the state continues to be one of the most powerful agents of surveillance and control over its citizens, in ways directly affecting women’s health. To take but a few additional examples, the state’s reluctance to enact strict gun control

Defining Women’s Health 25 legislation in the US is health-demoting for poor women of color, who are at an increased risk of gun-related homicides. Governments around the world also enact powerful legislation either providing or restricting access to abortion, contraceptives, and other reproductive technologies that affect women’s health and well-being through their ability to plan their pregnancies (e.g., Browner 2000; Browner et al. 1999; Luker 1985; see, also, in appendix, Ali 2002; Ginsburg 1989; Jeffrey and Jeffrey 1985, 2002; Kligman 1998; Ward 1986). Further-

more, the state controls access to health care itself and determines whether that health care will be entirely free, partially state subsidized,

or fee-for-service through a private health care industry (Inhorn 2003). Obviously, access to subsidized health care has major impacts on women’s lives, as do either progressive or retrogressive state policies regarding family leaves and childcare, all of which directly affect women’s health and well-being. In short, state policies have profound

impacts on women’s health in ways that are numerous and varied. A recent excellent example of state policies and their link to nationalist agendas can be found in Rhoda Kanaaneh’s Birthing the Nation: Strategies of Palestinian Women in Israel (2002, in appendix). In

this pathbreaking ethnography, Kanaaneh examines the purported “demographic war” between Palestinians and Israelis, in which women’s bodies are enlisted on both sides in a nationalist struggle to reproduce new citizens for these warring polities. Although the Israeli state limits access to subsidized contraception for Israeli Jewish women, it encourages the use of contraception in family-planning clinics set up for the Palestinian population within its midst. Indeed, the Zionist Israeli state continues to reinforce the notion of an “Arab

demographic threat” through uncontrolled Palestinian hyperfertility. However, as Kanaaneh shows in her ethnography based in the Galilee, many educated, middle-class Palestinian families in Israel have already thoroughly incorporated the use of contraception into their lives to produce small, “modern,” “high-quality” families. At the same time, many Palestinians remain ambivalent about contraception,

given Palestinian nationalist agendas to reproduce large quantities of children, especially sons, for the purposes of the national struggle. As Kanaaneh concludes, comparative ethnic political arithmetics and the reproductive wars they spawn are features of many nationalisms

around the world. However, in Israel, they are particularly salient, given the Israeli state’s attempts to “divide and rule”—including the

building of walls—the growing Palestinian population within its midst.

26 Marcia C. Inhorn Message Ten: The Politics of Women’s Health Ethnographies that highlight the role of the state inevitably point to the ways in which women’s bodies and health become the site of overt and covert, micro- and macropolitical struggle. Rayna Rapp’s and Faye Ginsburg’s (1991, in appendix) seminal article “The Politics of Reproduction,” in the Annual Review of Anthropology, was in some senses a call for medical anthropologists to begin assessing how women’s health is politicized, and to study women’s health activism and resistance. In their article, they defined politics broadly, as the ways in which people try to gain power and exert control over others. In their later, coedited volume, Conceiving the New World Order: The Global Politics of Reproduction (1995, in appendix), they include

numerous ethnographic examples of reproductive politics—trom the one-child-only policy in China (Anagnost 1995) to the politically calculated rapes and abductions of women during the political partition of India and Pakistan (Das 1995)—to make the point that the local social arrangements within which reproduction is embedded are inherently and often extremely politically contentious. Since the early 1990s, the politics of reproduction have been a major topic of inquiry among ethnographers, as evident in more than a dozen ethnographies listed in the appendix with the term “politics” in their titles. Indeed, it is fair to say that most of the ethnographies included in Table 1 deal, in one way or another, with very politicized subjects, including abortion, teenage pregnancy, enforced sterilization and eugenics, population control, welfare policies, third-party donation of gametes, surrogacy, fetal protection, lesbian parenthood, violence against women, and the like. A recent excellent example of the politics of women’s health can be found in Ellen Gruenbaum’s The Female Circumcision Controversy: An Anthropological Perspective (2001, in appendix), which is destined to become a classroom favorite. With this book, Gruenbaum estab-

lishes herself as the leading ethnographer of female circumcision (aka female genital cutting or female genital mutilation), providing Western readers with the most comprehensive, fair-minded, ethnographically rich, and theoretically sophisticated account of female circumcision.

The book begins by situating female circumcision within ethical and human rights debates in anthropology and global public health and feminist circles, where the practice of female circumcision has generally been reviled. However, drawing on her long-term fieldwork in Sudan—where the most extensive form of “pharaonic” cir-

Defining Women’s Health 27 cumcision (or, infibulation) is practiced—Gruenbaum makes sense of female circumcision within the multiple contexts of women’s lives, exploring its meanings in the realms of marriage, gender identity, ethnicity, religious morality, ritual, and sexuality. In her compelling conclusion, “Involvement,” Gruenbaum suggests that African women need

to take—and are, in fact, taking—the lead in the debates about the future elimination of this deeply embedded cultural practice. Thus, Gruenbaum demonstrates how Western universalizing campaigns to eradicate female circumcision around the globe are often based on simplistic and culturally insensitive understandings of African women’s lives and their local moral worlds (including local versions of Islam). Such insensitivity leads to morally insensitive programs bound to produce a cultural backlash.

Message Eleven: The Importance of Women’s Local Moral Worlds As Gruenbaum’s ethnography demonstrates, many women’s health issues are not only political but moral in nature. The notion of “local moral worlds,” as forwarded by medical anthropologist Arthur Kleinman, highlights the importance of “moral accounts ... of social participants in a local world about what is at stake in everyday experience” (1995: 27). For women around the world, local moralities, often religiously based, have major effects on women’s health decision making, particularly when the moral stakes are very high. For example, in her classic ethnography, Contested Lives: The Abortion Debate in an American

Community, Faye Ginsburg (1998, in appendix) demonstrates how the fractious debate over abortion in Fargo, North Dakota, is morally loaded, with the religiously backed right-to-life lobby arguing that life begins at the moment of conception and that moral women’s lives should be spent at home, raising their children in a sea of domesticity. This political backdrop—which includes abortion-clinic picketers keeping round-the-clock vigils at local abortion clinics while carrying their larger-than-life pictures of supposedly aborted fetuses—provides the moral landscape in which US women must choose whether or not to terminate a pregnancy (Ginsburg 1998, in appendix). Indeed, as Rayna Rapp (1999, in appendix) also has shown so vividly in her work on prenatal genetic testing, women are often thrust into the position of making difficult moral decisions about abortion. Religious abstractions, such as the right to life, may prove to be less than

28 Marcia C. Inhorn helpful when a woman is confronted with the real-life consequences of continuing a pregnancy, including caring for a disabled child.

One of the major messages of women’s health ethnography is that such moral decisions are part and parcel of women’s health experiences. As Rapp (1999, in appendix) has pointed out, women are the “moral pioneers” who must confront their own religious belief systems as well as the moral possibilities generated by the brave new

world of science, technology, and biomedicine. In her own work, she has shown what is at stake for a woman receiving a “positive diagnosis” of a potential birth defect in the fetus she is carrying in her womb. But other moral questions are equally problematic. For example, what happens when a woman is disallowed by her religion from accepting help in the midst of an obstetric emergency? What happens when a woman is advised to undergo donor insemination because the man she loves is infertile? These are the kinds of moral dilemmas increasingly being highlighted by ethnographers working

with women around the globe. Capturing the local intricacies and intimacies of morality, including the ties between local moralities and religion, is an important mission for women’s health ethnographers working across moral—cultural landscapes.

To highlight the importance of local moralities, two recent ethnographies, one from Israel and my own from neighboring Egypt (2003, in appendix), provide a striking example of moral contrasts. In Reproducing Jews: A Cultural Account of Assisted Conception in Israel

(2000, in appendix), Susan Martha Kahn takes readers into the often arcane world of Jewish Halakhic law, where male rabbis legislate on the appropriate uses of new reproductive technologies for their followers. Kahn carefully describes how these rabbinical debates and decisions affect the actual practice of Israeli in vitro fertilization (IVF), especially in clinics catering to orthodox populations. For example, third-party donation of gametes, including sperm donation,

is allowed, because Jewishness is seen to be conferred through the mother’s side, particularly through the act of gestating and birthing the baby. However, most conservative rabbis prefer that non-Jewish donor sperm be used to prevent the implications of adultery between

a Jewish man and a Jewish woman and to prevent future incest among the offspring of anonymous donors in this small, intermarrying country. Furthermore, debates have centered around whether surrogacy should be allowed for infertile couples, using single or mar-

ried surrogates. Generally, single Jewish women are preferred as surrogates, to avoid the implications of adultery for married Jewish surrogate women as well as to confer Jewishness through a Jewish

Defining Women’s Health 29 woman’s gestation of the fetus. Finally, because the Jewish state is pronatalist—with the state subsidizing up to six cycles of IVF or up to the birth of two IVF children for any given Israeli IVF patient or couple—rabbis have generally been permissive when it comes to single career women as well as lesbian Jewish mothers conceiving children through assisted conceptive means. Israel’s relative permissiveness over the use of donor gametes, surrogacy, and single and lesbian motherhood stands in stark contrast to the Muslim Middle East, including neighboring Egypt, where I have conducted my own ethnographic research over the past two decades. In Local Babies, Global Science: Gender, Religion, and In Vitro Fertilization

in Egypt (2003, in appendix), I show how Sunni Islamic religious authorities have issued fatwas effectively prohibiting many of the uses of new reproductive technologies found in neighboring Israel. In Egypt, all forms of third-party donation—sperm, eggs, embryos, or uteruses (as in surrogacy)—are strictly prohibited. These prohibitions are upheld by the Coptic Christian patriarchate in the country as well as the professional association of Egyptian obstetricians and gynecologists. Indeed, throughout the Sunni Muslim world,’ which stretches from Morocco to Malaysia, third-party donation in IVF is disallowed for reasons that are religious and moral in nature. According to the Muslim Egyptian IVF patients I interviewed in Cairo, third-party donation leads to a “mixture of relations,” which is Haram, or sinful in the religion. For them, moral concerns revolve around three sets of related

issues: the implications of zina, or adultery, associated with using donor gametes; the potential for incest among the children of unknown donors; and the confusion of lines of descent, kinship, and inheritance, which is both immoral and psychologically devastating to a potential donor child. What is interesting here is that moral concerns over adultery and incest are found in both Egypt and Israel, yet the solutions to these moral dilemmas have taken very different forms in practice in the two countries. Whereas third-party donation is allowed in one country, it is strictly prohibited in another, with implications for childless women that are both poignant and profound.

Message Twelve: The Importance of Understanding Women’s Subjectivities To understand the poignancy and profundity of reproductive health matters such as these, women’s own subjectivities—tor example, how they experience being infertile women or the wives of infertile men—

30 Marcia C. Inhorn need to be understood. In the burgeoning ethnography of infertility, Gay Becker’s The Elusive Embryo: How Women and Men Approach New Reproductive Technologies (2000, in appendix) stands out for capturing

both the hope and the heartbreak of infertility and IVE, as represented through the voices of childless women and their husbands. Becker allows her informants to talk at length about what it means to be infertile, how difficult it is to choose the path of donation, how parents struggle over disclosing information to donor children, and how notions of parenthood and family need to be “rewritten” when new reproductive technologies fail to produce a “take-home” baby. Ultimately, the message from Becker’s book—and from Linda Layne’s recent, related ethnography on the meanings of pregnancy loss (2003, in appendix)—is that ethnography is at its best when it gives voice to people’s lived experiences by including narratives and stories as essential components of the ethnographic text. Many of the ethnographies included in the appendix are praiseworthy for doing so. Thus, the final message from the ethnographies is that a great deal about women’s health can be learned by letting women talk—by etffectively and compassionately listening to them narrate their own subjective experiences of sickness and health, pain and suffering, oppression and resistance, good health, and occasional joy that are

part and parcel of women’s health experiences around the globe. Indeed, by talking with and listening to women, ethnographers can discern many additional messages about women’s health, above and beyond those highlighted in this chapter. In conclusion, anthropology as a discipline has done a commendable job of understanding women’s subjectivities by insisting that

women themselves be the interlocutors of their own lives and experiences. In the area of women’s health, the evidence of this contribution is clear in the rich list of ethnographies presented in the appendix. The production of more than one hundred and fifty ethnographies of women’s health over the course of twenty-five years—

with nearly two-thirds of these books published since 2000—is a truly remarkable scholarly accomplishment. As we begin this new millennium, we can anticipate that continuing progress will be made in this ethnographic approach to women’s health, with women themselves doing the “defining” in “Defining Women’s Health.”

Acknowledgments Iam grateful to my fellow ethnographers who wrote the many evocative ethnographies of women’s health on which this chapter is wholly

Defining Women’s Health 3] based. I also thank three institutions, Radcliffe/Harvard University, the University of Michigan, and American University of Beirut, for inviting me to deliver the lecture on which this introduction is based. I am grateful to many excellent graduate students who have provided stimulating discussion about the ideas in this introduction during seminars taught at the University of Arizona, Emory University, and the University of Michigan. Finally, Iam grateful to my former secretary, Beth Talbot, who helped me compile this enormous book list into a neat appendix.

Notes This introduction was first published in 2006 as an article in Medical Anthropology Quarterly (20[3]: 345-78). Reprinted with permission.

1. This book list is one that I have compiled by myself over time and is meant to be comprehensive. I apologize for any errors of omission. 2. Many of the books on this list are award winners. For example, approximately a dozen of the single-author ethnographies in the appendix are winners of the Society for Medical Anthropology’s Eileen Basker Prize for Outstanding Research in Gender and Health, which is awarded at the American Anthropological Association’s annual meetings. At least two of these books (by Margaret Lock and Rayna Rapp) have won the coveted J.I. Staley Prize of the School of American Research. Others have won the Margaret Mead Award, given annually by the Society for Applied Anthropology; still others have received awards given by area studies associations (e.g., the African Studies Association). Similarly, several of the edited volumes in the appendix represent seminal collections in the anthropology of reproduction and have thus been recognized through two relatively new awards (for best new edited volume and for most enduring edited volume) being offered annually by the Council for the Anthropology of Reproduction of the Society for Medical Anthropology. 3. This point was made by Huda Zurayk, dean of the Faculty of Health Sciences at American University of Beirut, where I presented this chapter as a paper in January 2003. I am grateful to her for this insight. 4. I regularly teach two interdisciplinary graduate seminars, Gender and Health: Ethnographic Perspectives and Intersectionality, and Women’s Health: Ethnographic Approaches to Race, Class, Gender, and “Difference.”

The former is devoted to the non-Western ethnographic literature and the latter to the Western ethnographic literature on women’s health. 5. As noted incisively by one anonymous reviewer of this introduction, “one fears that this focus is a product of the worst kind of solipsism, in which mostly middle class, mostly white women work on the issues of importance to them rather than truly ‘listening’ to women around the world.”

32 Marcia C. Inhorn 6. Unfortunately, this book is out of print, despite efforts to have it published in paperback. 7. In the Shi’a Muslim-majority countries of Iran and Lebanon, religious leaders have recently accepted the idea of third-party donation, especially of eggs. Thus, egg-donor programs are in place in both of those countries, as I discovered through recent fieldwork in Lebanon (2004a) and as Tremayne (2005) has shown for Iran.

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Boston Women’s Health Book Collective. 1973. Our Bodies, Ourselves. Boston: Boston Women’s Health Book Collective. Browner, Carole H. 2000. “Situating Women’s Reproductive Activities.” American Anthropologist. 102: 773-88. Browner, Carole H., H. M. Preloran, and S. J. Cox. 1999. “Ethnicity, Bioethics, and Prenatal Diagnosis: The Amniocentesis Decisions of Mexican- Origin Women and Their Partners.” American Journal of Public Health 89: 1658-66. Collins, Patricia Hill. 1991. Black Feminist Thought: Knowledge, Consciousness, and the Politics of Empowerment. New York: Routledge. Das, Veena. 1995. “National Honor and Practical Kinship: Unwanted Women and Children.” In Conceiving the New World Order: The Global Politics of Re-

production. Faye D. Ginsburg and Rayna Rapp, eds., Berkeley: University of California Press. Dudgeon, Matthew R. and Marcia C. Inhorn. 2003. “Gender, Masculinity, and Reproduction: Anthropological Perspectives.” International Journal of Men's Health 2: 31-56. . 2004. “Men’s Influences on Women’s Reproductive Health: Medical Anthropological Perspectives.” Social Science and Medicine 59: 1379-95. Ehrenreich, Barbara and Deidre English. 1978. For Her Own Good: 150 Years of the Experts’ Advice to Women. New York: Doubleday.

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dom House. Ginsburg, Faye D. and Rayna Rapp. 1991. “The Politics of Reproduction.” Annual Review of Anthropology 20: 311-43. Gramsci, Antonio. 1971. Selections from the Prison Notebooks. London: Lawrence

and Wishart.

Defining Women’s Health 33 Inhorn, Marcia C. 2002. “Sexuality, Masculinity, and Infertility in Egypt: Potent Troubles in the Marital and Medical Encounters.” The Journal of Men's Studies 10: 343-59. . 2003. “‘The worms are weak’: Male Infertility and Patriarchal Paradoxes in Egypt.” Men and Masculinities 5: 236—56. . 2004a. “Middle Eastern Masculinities in the Age of New Reproduc-

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. 2006. “‘He won’t be my son’: Middle Eastern Muslim Men’s Discourses of Adoption and Gamete Donation.” Medical Anthropology Quarterly 29(1): 94-120. Khanlou, N. and E. Peter. 2005. “Participatory Action Research: Considerations for Ethical Review.” Social Science @ Medicine 60: 2333-40. Khattab, Hind, Nabil Younis, and Huda Zurayk. 1999. Women, Reproduction, and Health in Rural Egypt: The Giza Study. Cairo: American University in Cairo Press. Kleinman, Arthur. 1995. Writing at the Margin: Discourse between Anthropology and Medicine. Berkeley: University of California Press.

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82-122. Lindenbaum, Shirley and Margaret Lock, eds. 1993. Knowledge, Power, and Practice: The Anthropology of Medicine and Everyday Life. Berkeley: University of California Press.

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34 Marcia C. Inhorn Tremayne, Soraya. 2005. “The Moral, Ethical and Legal Implications of Egg,

Sperm and Embryo Donation in Iran.” Paper presented at the conference on “Reproductive Disruptions: Childlessness, Adoption, and Other Reproductive Complexities.” University of Michigan, Ann Arbor, May 19.

Appendix

DEFINING WOMEN’S HEALTH:

A List OF 1577 ETHNOGRAPHIES

Western Countries

Author‘( s) Title and Year

Publisher

Agigian, Amy Baby Steps: How Lesbian Alternative Wesleyan Univ. Insemination 1s Changing the World Press, 2004

Becker, Gay Healing the Infertile Family: Univ. of California Strengthening your Relationship in Press, 1997 the Search for Parenthood

Becker, Gay The Elusive Embryo: How Women Univ. of California and Men Approach New Reproductive Press, 2000 Technologies

Blum, Virginia Flesh Wounds: The Culture of Univ. of California

Cosmetic Surgery Press, 2003

Bonaccorso, Monica Conceiving Kinship: Heterosexual, Berghahn Books, Lesbian and Gay Procreation, Family 2005 and Relatedness in the Age of Assisted Conception in South Europe

Casper, Monica J. The Making of the Unborn Patient: A _—- Rutgers Univ.

Social Anatomy of Fetal Surgery Press, 1998

Davis, Kathy Reshaping the Female Body: The Routledge, 1995 Dilemma of Cosmetic Surgery

Dodson, Lisa Don't Call Us Out of Name: The Beacon Press, Untold Lives of Women and Girls in 1998 Poor America

Davis-Floyd, Robbie Birth as an American Right of Univ. of California

Passage, 2" ed. Press, 2004

36 Marcia C. Inhorn Edin, Kathryn and Promises I Can Keep: Why Poor Women Univ. of California

Kefalas, Maria Put Motherhood Before Marriage Press, 2005 Edwards, Jeanette, Technologies of Procreation: Kinship in Routledge, 1999 Franklin, Sarah, the Age of Assisted Conception, 2" ed. Hirsch, Eric, Price, Frances, and

Strathern, Marilyn

Erickson, Pamela Latina Adolescent Childbearing in Univ. of Texas

East Los Angeles Press, 1998

Featherstone, Katie, Risky Relations: Family, Kinship and Berg, 2005 Bharadwaj, Aditya, the New Genetics Clarke, Angus and Atkinson, Paul

Frank, Gelya Venus on Wheels: Two Decades of Univ. of California Dialogue on Disability, Biography, Press, 2000 and Being Female in America

Franklin, Sarah Embodied Progress: A Cultural Routledge, 1997 Account of Assisted Conception

Ginsburg, Faye D. Contested Lives: The Abortion Debate Univ. of California

in an American Community, 2" ed. Press, 1998 Gonzalez-Lopez, Erotic Journeys: Mexican Immigrants Univ. of California

Gloria and Their Sex Lives Press, 2005

Greil, Arthur L. Not Yet Pregnant: Infertile Couples in Rutgers Univ.

Contemporary America Press, 1991

Gremillion, Helen Feeding Anorexia: Gender and Power Duke Univ. Press,

at a Treatment Center 2003

Jacobson, Nora Cleavage: Technology, Controversy, and Rutgers Univ. the Irontes of the Man-Made Breast Press, 2000 Jordan, Brigitte Birth in Four Cultures: A Crosscultural Waveland Press, Investigation of Childbirth in Yucatan, 1993 Holland, Sweden, and the United States

Konrad, Monica Nameless Relations: Anonymity, Berghahn Books, Melanesia and Reproductive Gift 2006 Exchange between British Ova Donors and Recipients

Lather, Patti and Troubling the Angels: Women Living Westview Press,

Smithies, Chris with HIV/AIDS 1997

Layne, Linda L. Motherhood Lost: A Feminist Account — Routledge, 2003 of Pregnancy Loss in America

Lewin, Ellen Lesbian Mothers: Accounts of Gender Cornell Univ.

in American Culture Press, 1993

Luttrell, Wendy Pregnant Bodies, Fertile Minds: Routledge, 2002 Gender, Race, and the Schooling of Pregnant Teens

Martin, Emily The Woman in the Body: A Cultural Beacon Press, Analysis of Reproduction, 3” ed. 2001

Appendix 37 Mitchell, Lisa M. Baby’s First Picture: Ultrasound and Univ. of Toronto

the Politics of Fetal Subjects Press, 2001 Morgen, Sandra Into Our Own Hands: The Women’s Rutgers Univ. Health Movement in the Untted States, — Press, 2002 1969-1990

Moss, Pamela and Women, Body, Illness: Space and Identity Rowman &

Dyck, Isabel in the Everyday Lives of Women with Littlefield, 2002 Chronic Illness

Mullings, Leith Stress and Resilience: The Social Context Kluwer Academic/

and Wali, Alaka of Reproduction in Central Harlem Plenum Publishers, 2001

Nichter, Mimi Fat Talk: How Girls and Their Parents Harvard Univ.

Talk about Dieting in America Press, 2000 Oaks, Laury Smoking and Pregnancy: The Politics Rutgers Univ.

of Fetal Protection Press, 2001

Paxson, Heather Making Modern Mothers: Ethics and Univ. of California Family Planning in Urban Greece Press, 2004 Ragone, Helena Surrogate Motherhood: Conception in Westview Press,

the Heart 1994

Rapp, Rayna Testing Women, Testing the Fetus: Routledge, 1999 The Social Impact of Amniocentesis in America

Reed, Richard K. Birthing Fathers: The Transformation Rutgers Univ. of Men in American Rites of Birth Press, 2005

Sandelowski, With Child in Mind: Studies of the Univ. of Margarete Personal Encounter with Infertility Pennsylvania Press, 1993

Sharpe, Tanya Behind the Eight Ball: Sex for Crack Haworth Press,

Telfair Cocaine Exchange and Poor Black 2005 Women

Smith-Morris, Diabetes Among the Pima: Stories of Univ. of Arizona

Carolyn Survival Press, 2006 Sobo, Elisa Choosing Unsafe Sex: AIDS-Risk Univ. of

Denial Among Disadvantaged Women _ Pennsylvania Press, 1995

Sterk, Claire Tricking and Tripping: Prostitution in Social Change

the Era of AIDS Press, 2000

Sterk, Claire Fast Lives: Women Who Use Crack Temple Univ.

Cocaine Press, 1999

Sullivan, Maureen The Family of Woman: Lesbian Mothers, Univ. of California

Their Children, and the Undoing of Press, 2004 Gender

Thompson, Charis Making Parents: The Ontological MIT Press, 2005 Choreography of Reproductive Technologies

38 Marcia C. Inhorn Todd, Alexandra Intimate Adversaries: Cultural Conflict — Univ. of

Dundas Between Doctors & Women Patients Pennsylvania Press, 1989

Waller, Maureen R. My Baby’s Father: Unmarried Parents Cornell Univ.

and Paternal Responsibility Press, 2002 Ward, Martha Poor Women, Powerful Men: America’s Westview Press, Great Experiment in Family Planning 1986 Whitaker, Elizabeth Measuring Mamma’s Milk: Fascism and Univ. of Michigan

Dixon the Medicalization of Maternity in Italy _ Press, 2000 White, Renee Putting Risk in Perspective: Black Rowman & Teenage Lives in the Era of AIDS Littlefield Publishers, 1999

Non-Western Countries Ali, Kamran Asdar = Planning the Family in Egypt: New Univ. of Texas

Bodies, New Selves Press, 2002

Allen, Denise Roth Managing Motherhood, Managing Risk: Univ. of Michigan Fertility and Danger in West Central Press, 2004 Tanzania

Biehl, Joao Vita: Life in a Zone of Social Univ. of California

Abandonment Press, 2005

Bledsoe, Caroline Contingent Lives: Fertility, Time, and Univ. of Chicago

Aging in West Africa Press, 2002

Boddy, Janice Wombs and Alien Spirits: Women, Men, Univ. of Wisconsin and the Zar Cult in Northern Sudan Press, 1989 Booth, Karen M. Local Women, Global Science: Fighting Indiana Univ.

AIDS in Kenya Press, 2004

Borovoy, Amy The Too-Good Wife: Alcohol, Univ. of California Codependency, and the Politics of Press, 2005 Nurturance in Postwar Japan

Croll, Elisabeth Endangered Daughters: Discrimination Routledge, 2000 and Development in Asia

Dalsgaard, Anne Matters of Life and Longing: Female Museum

Line Sterilization in Northeast Brazil Tusculanum Press, 2004

Delaney, Carol The Seed and the Soil: Gender and Univ. of Cosmology in Turkish Village Society Pennsylvania Press, 1991

Devisch, Rene Weaving the Threads of Life: The Khita Univ. of Chicago Gyn-Eco-Logical Healing Cult Among Press, 1993 the Yaka

Early, Evelyn Baladi Women of Cairo: Playing with Lynne Rienner,

an Egg and a Stone 1993

Einarsdottir, Jonina Tired of Weeping: Mother Love, Child Univ. of Death, and Poverty in Guinea-Bissau Wisconsin, 2004

Appendix 39 Feldman-Savelsberg, Plundered Kitchens, Empty Wombs: Univ. of Michigan

Pamela Threatened Reproduction and Identity Press, 1999 in the Cameroon Grassfields

Finkler, Kaja Spiritualist Healers in Mexico: Praeger; Bergin & Successes and Failures of Alternative Garvey Publishers,

Therapeutics 1985

Finkler, Kaja Women in Pain: Gender and Morbidity — Univ. of

in Mexico Pennsylvania Press, 1994

Fisch, Joerg Burning Women: A Global History of Berg, 2005 Widow-Sacrifice from Ancient Times to the Present

Flueckiger, Joyce In Amma’s Healing Room: Gender and Indiana Univ.

Burkhalter Vernacular Islam in South Indta Press, 2006 Fordham, Graham =A New Look at Thai AIDS: Perspectives Berghahn Books,

from the Margin 2004

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An Anthropological Perspective Pennsylvania Press, 2001

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40 Marcia C. Inhorn Jeffery, Roger and Contaminating States and Women’s Indian Social

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Mabilia, Mara Breast Feeding and Sexuality: Berghahn Books, Behaviour,Beliefs and Taboos among 2004 the Gogo Mothers in Tanzania

McClusky, Laura “Here, Our Culture 1s Hard”: Stories Univ. of Texas of Domestic Violence from a Mayan Press, 2001 Community in Belize

Montgomery, Modern Babylon? Prostituting Children Berghahn Books,

Heather in Thailand 2001

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Michelle The Politics of Intervention Press, 2005

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Sargent, Carolyn Maternity, Medicine, and Power: Univ. of California Reproductive Decisions in Urban Benin Press, 1989

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Nancy of Everyday Life in Brazil Press, 1992

Appendix 4] Sobo, Elisa Janine One Blood: The Jamaican Body State Univ. of New York Press, 1993

van Hollen, Cecilia Birth on the Threshold: Childbirth Univ. of California

and Modernity in South India Press, 2003 Wardlow, Holly Wayward Women: Sexuality and Univ. of California Agency in a New Guinea Society Press, 2006 Weisberg, D. Kelly = The Birth of Surrogacy in Israel Univ. Press of Florida, 2005

Edited Collections Adams, Vincanne, Sex in Development: Science, Sexuality, | Duke Univ. Press,

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Mgalla, Zaida Africa: A Multi-Disciplinary Perspective Institute, KIT Publishers, 2001

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Buckley, Thomas Blood Magic: The Anthropology of Univ. of California

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Chawla, Janet Birth and Birthgivers: The Power Shakti Books,

Behind the Shame New Dehli, 2006

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E. and Johnson, of Professionalization Christine

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DeLoache, Judy A World of Babies: Imagined Childcare Cambridge Univ.

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Connors, Margaret, and Structural Violence Press, 1996 and Simmons, Janie

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42 Marcia C. Inhorn Franklin, Sarah and = Reproducing Reproduction: Kinship, Univ. of

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Frank Reproductive Technologies

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Appendix 43 Obermeyer, Carla Cultural Perspectives on Reproductive Oxford Univ. Makhlouf Health Press, 2001 Obermeyer, Carla Family, Gender, and Population in the American Univ. in

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Wozniak, Danielle

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Part I REPRODUCTION AND DISRUPTION: REDEFINING THE

CONTOURS OF NORMALCY

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Chapter I

THE DIALECTICS OF DISRUPTION: PARADOXES OF NATURE AND PROFESSIONALISM IN CONTEMPORARY AMERICAN CHILDBEARING Caroline H. Bledsoe and Rachel F. Scherrer

Introduction D espite the development so many advancements in obstetrics and related fields thatof have minimized the mortality risks of childbirth in the US, obstetrics remains the adversary of many contemporary American women. No other medical specialty is described in web sites, internet chatrooms, and magazine articles as being so disruptive, a fact that seems paradoxical given the joy that the event of childbirth is supposed to represent. Obstetricians attend over 90 percent of US births, and the great majority of obstetrician-attended births produce healthy mothers and children. Indeed, aside from the preventive medicines, obstetrics is the only specialty in which the expected outcome is normality. These facts would seem to merit more positive mention for obstetrics than it draws. Lawsuits, though indicators of many things, are telling. Obstetrics has one of the highest rates of litigation among the medical fields, whether measured by proportion of lawsuits per total number of cases or total payouts (see Richards and Rathbun 1999: 391).

48 Caroline H. Bledsoe and Rachel F. Scherrer A prominent charge from critics in recent decades has been that the field is not woman-centered. Recent figures on completing residencies in US medical schools, however, show that in 1999, well over half (58 percent) of those completing obstetrics/gynecology residen-

cies were women. Just four years later, the proportion of women finishing obstetrics/gynecology residencies had risen to 71 percent, a gender shift that Brotherton et al. (2004) describe as the most dramatic in all the medical specialties over this time period.' Anecdotal evidence from the medicine-rich Chicago area (Scott Moses, personal communication) suggests that the men who enter the field today are largely specialists in the areas of surgery or high-risk medicine:

those having few direct dealings with mainstream clinical patients. Still, the field of obstetrics is viewed with mistrust: a disruption in what should be the most natural of processes. The character of the natural is arguably the guiding disciplinary question of anthropology, if not that of the social and health sciences in general. In the harder sciences, nature refers to elemental forces of physics, chemistry, and biology that would operate, in dy-

namic interrelation, in the absence of human intervention. Most anthropologists, however, following Kant (Prolegomena), refer to na-

ture as that which society takes for granted. Thus, nature does not inhere in objects or processes as things-in-themselves, but in how the mind assembles its perceptions of them. Hence, what we see as natural or commonsensical depends on our vantage point in social class or history.* The problem for anthropologists, of course, is that because natives take for granted what they regard as natural, they seldom choose to talk about it. If views of what is natural are historically and situationally specific, so too are views of disruption, since they represent the antithesis of whatever is considered natural. As views of the natural shift, views of what is disruptive shift accordingly, taking up their positions of opposition.’ Since the violation of what people hold as deeply felt cultural principles evokes intense sentiment, one way to get a fix on cultural conceptions of nature is to observe what action society’s members take in reaction to factors they describe as disruptive. Another way is to study how society institutionalizes its domains: structuring efficient relations to conduct specialized tasks and routinize behaviors, giving them rule-like status (Giddens 1979). Institutionalization also involves professionalization: training specialists and assigning them licensed authority to practice by demonstrating competence in the principles and standards of their specialties.* With childbearing now representing, in American cultural ideology,

the most quintessentially natural of human activities, efforts to in-

The Dtalectics of Disruption 49 stitutionalize and professionalize it rise sharply to the surtace of debate. Framing our discussion in the worries that can surround reproductive events—the highly contingent, even dangerous character of reproductive naturalisms (e.g., Bledsoe 2002a)—we explore the mix of

worries about disruption and the practices that appear to generate it in US middle-class ideologies today. In the US, infertility and miscarriage are described as highly disruptive events in reproductive life

(see Becker 1997 and Layne 2003). Equally salient in voiced concerns about reproductive disruption is the use of highly technical instruments, drugs, and medical procedures, particularly by professional obstetricians (Davis-Floyd 1996). We show that contemporary American women do not have the same worries that women in the US previously had or that many women in the developing world continue to have, since few fear death or lasting damage from childbirth. With such strong pressures not only for perfect motherhood (Douglas and Michaels 2004) and a perfect baby (Rapp and Gins-

burg, Chapter 3) but also, we believe, a perfect birth, women now fear actions by licensed practitioners that may interrupt what they see as a natural reproductive event. Building on the interactionist insights of Georg Simmel, we suggest that it is not what obstetricians do that is disruptive—the intrinsic nature of their actions—but rather the implications about control that the presence of a professional obstetrician in the delivery room represents. In the popular American vision, “natural” often implies the absence of human intervention, and nature has been transformed into an entity threatened by control, requiring active preservation (for a similar discussion, see Haraway 1984/1985). While the pursuit of a natural birth appears to follow a similar logic, we believe that the term natural has come to be more strongly equated with a woman’s ability to retain control over her own birth event. To this end, American women have used opportunities presented by popular sources such as the internet to reach levels of near-professional obstetric competence. They become what we might term “professionalized patients”: highly versed in medical technicalities surrounding the specifics of their own case. The fact that a licensed practitioner has legal authority to act in the best interests of a patient who often has a remarkable degree of technical knowledge about the process she is experiencing—and who also has a strong desire to make her own decisions in a domain she considers so natural—makes the potential for discord very intense. Struggles between women and doctors in what has become a thoroughly professionalized reproductive environment produce a dynamic of perpetual and inevitable unease.

50 Caroline H. Bledsoe and Rachel F. Scherrer Data The present chapter grows out of a longtime attempt to draw on the US for systematic juxtapositions against a series of striking empirical findings from West Africa.’ It builds on research that is characteristically ethnographic: participant observation, interviews, and tours of medical facilities in Chicago. We also conducted several lengthy interviews with physicians and midwives, and had a number of informal conversations with women, men, and nurses. The data we utilize here, however, will come primarily from published materials in popular media. These materials were produced by professional writers who direct their content at mothers or would-be mothers, and by women themselves, who write largely from their experience and problems. Such materials proliferate in doctors’ offices, hospitals, and drug stores, as well as on television and in internet articles, ads, and chatrooms. In this chapter, we draw on materials close at hand: magazines and web sites offering advice on how to negotiate the birthing landscape of facilities, products, and practitioners. We draw on two especially popular magazines: Fit Pregnancy and Mothering. Fit Pregnancy, published by Shape Magazine, targets a wide spec-

trum of middle-class women, with articles on everything from the latest stroller designs and recipes that allow pregnant women an extra 300 cautious pregnancy calories each day, to makeup tips on hiding that 2 AM-feeding-shift look and exercises for regaining postpartum muscle tone. Mothering, with its embrace of organic foods, cloth diapers, and midwives, as well as its militant animosity toward hospitals, labor anesthesia, and childhood vaccines, aims directly for consumers who seek naturalistic styles of life. We also examine an issue of Awake!, a pamphlet published by the proselytizing religious Watchtower organization (Jehovah’s Witnesses); the New York Times; and a textbook on medical malpractice law. Although these sources may seem arbitrary if not odd, the exam-

ples they yield are not at all out of line with the thousands of texts and images we have examined, and are fully consonant with the ethnographic work. The personal stories, scientific facts, statistical findings, pictures, and advertisements in these sources articulate strong cultural convictions from middle-class America (and elsewhere in the world) about reproduction, and they reflect an abundance of philosophies that today’s women are urged to follow. They also describe alternatives, hint at ways of phrasing requests to physicians, and give names of professionals to contact for second opinions.

Taken together, these materials lay bare a consuming, paradoxical

The Dtalectics of Disruption 51 world of worry, accusation, and strategy. Using “admonition language,” many of these sources urge women to conduct births in ways

that are defined as natural and they cast implicit blame on those who fail to achieve them. Needless to say, relying on sources that so transparently emphasize ideals is risky for generalizations regarding behavior. Only 1 percent of births in the US occur in the home, and only 5 percent occur in birthing suites or birthing centers. Robbie Davis-Floyd (pers. comm.) speculates that hospitals may use their birth centers, which comprise relatively small portions of their obstetrics facilities, for mar-

keting purposes. If so, this fact is itself testimony to the strength of the sentiment that impels the quest for naturalism. Using such sources also raises questions about who is not represented. Almost entirely missing from US popular media on birth are references to women in countries where pregnancy and childbirth can set into motion utterly different visions of risk. That we found almost nothing in the popular literature on pregnancy and birth that was directed at lowerclass women in the US is striking. It is very likely that our casts were not broad enough, though this relative absence is itself worthy of study. Yet attempting to achieve for balance and perspective among such a motley array of uneven sources is in one sense no different than using any data, in that one must always read “sideways” and between the lines, and triangulate even among “missing” data points.

The Tolls of Reproduction From the frame of intervention-free birth goals, we are on much firmer ground concerning missing data when we turn to the specter

of reproductive risks from earlier eras in the US that continue to plague women and children in other places today. In places like rural sub-Saharan Africa, most women frame the experience of reproduction very differently (Bledsoe 2002a). Cases of death or serious injury at birth that can pose devastating disruptions are, comparatively speaking, rare events in the US; but problems associated with reproduction take an enormous toll in developing countries.°® Africa has by far the highest rates of death in the world due to maternal causes: the death of a woman while pregnant or within forty-two days of the termination of pregnancy from causes related to the pregnancy or its management. According to estimates of maternal mortality in 2000 by WHO, UNICEF, and UNFPA , 529,000 women

52 Caroline H. Bledsoe and Rachel F. Scherrer worldwide died of maternity-related causes. Sub-Saharan Africa, although it constitutes only 12 percent of the world’s population, accounted for nearly half of all maternal-related deaths (47 percent: 251,000), and African women were 175 times more likely to die from maternal causes than women in developed countries.’ And for every woman who died, twenty more suffered injuries to pelvic muscles, organs, or the spinal cord. In sub-Saharan Africa, individual women

face the risks associated with childbirth from 4 to 8 times during their lives, with a cumulative lifetime risk of maternal death of 1 in 16, compared with one chance in 2,800 in developed countries: the largest difference between poor and rich countries of any health indicator. While women in Angola, Malawi, Niger, and Sierra Leone ran a lifetime risk of 1 in 6 or 7 of dying from maternal-related causes,

women in Sweden stood a 1 in 29,800 chance and zero chance in Iceland. The principal factors cited for high maternal death rates in Africa include infection, multiple closely-spaced births, hemorrhage,

obstructed labor, hypertension, and the complications of abortion, especially among adolescents. Besides these complications are a host

of other potential ones: placenta previa (the positioning of the placenta between the baby and the birth canal, creating risk of hemorrhage), placenta abruptio (the disengagement of the placenta from the uterine wall before birth, cutting off oxygen and nutrients to the baby), umbilical cord entanglements, toxemia, Rh factor incompatibility, anemia, maternal diabetes, and infectious disease. Many obstetric emergencies cannot be averted in pregnancy, though their effects can be mitigated with sufficient resources. In the developing world, a lack of access to the kinds of medical interventions that Western women hold in invisible reserve to ensure normal outcomes are among the most important factors contributing to high rates of maternal mortality at the point of childbirth. Among the most noted resource problems are a lack of access to adequate pre- and postnatal care and a paucity of emergency obstetrical care for complications, basic supplies and equipment, transportation to referral points, and staff; many African countries, for example, have been hit in recent years by an overseas exodus of medical personnel. Maternal deaths leave families without sisters, wives, and mothers, while young children whose mothers die run much higher risks of death than do children with living mothers. As for the risks that children themselves face, rates of infant and child mortality have come down dramatically in many parts of the world in the last three decades, including in a number of African countries, but a child in Africa still has a one in six chance of dying before age five, with im-

The Dtalectics of Disruption 53 poverished children even more likely to die, and only half of all children in sub-Saharan Africa are immunized during their first year of life. Worldwide, around 60 percent of all infant deaths (deaths during the first month of life) are linked to infectious and parasitic dis-

eases .® However, poor maternal nutrition and maternal morbidity claim millions of infant lives, as does death during delivery from suf-

focation in obstructed labor or from maternal structural anomalies that interventions might have alleviated. Most of the facts and figures from the world of biomedicine present the risks of reproduction from a particular vantage point: the universalizing internationally commensurate metrics and standards, and in the Western scientific languages of anatomy, physiology, and statistics. In the subcontinent itself, African women speak of the tolls of reproduction in ways that overlap with those of Western science, and yet their ways are decidedly different. Birth in Africa is seldom described as natural, though women’s writings could be used to explore this; written materials on the birth process in Africa almost in-

variably come from the discourse of medical professionals. In The Gambia (Bledsoe 2002a), however, most women contemplate their reproductive life pathways through cultural frames of contingency. In contrast to Western popular and academic writings that imply a predictable chronological linear decline from forces that work their effects independently of human action, the African vision is built on the conviction that it is not time, but physically traumatic life events that “age” the body; this they do cumulatively and, particularly for

women, as a function of reproduction. In this vision, birth is an event of potentially mortal consequence. Most births, of course, do not end in death, but each is considered to exert a cumulative toll of increasing morbidity on the body such that the physical female life is highly contingent on the pacing and severity of each event. Among all of the forces exerting tolls on the human body, childbirth is seen as the most powertul by far. Difficult and/or closely spaced births, in combination with a poor diet and strenuous work responsibilities, can exact disproportionate and cumulative tolls, making a woman look, feel, and behave much “older” than her empirically validated years would suggest and making further childbirth dangerous. Poor women who desire “all the children God gives them” will almost certainly run up against the anatomical and energy limits of the body before they run into any temporal boundaries on the ability to conceive, the matter on which contemporary Western culture is so focused. These conclusions, supported by abundant medical

54 Caroline H. Bledsoe and Rachel F. Scherrer evidence, suggest that our increasing personal distance from the high-and-risky fertility end of the experiential spectrum, combined with our unprecedented levels of health and copious backup in case of emergencies, blocks from our experiential vision the enormous medical toll that reproduction can take on women over the “long haul” of reproductive life in high-fertility societies. Until well into the twentieth century, an abundance of materials from the West gave vivid testimony to the risks that capricious “accidents” of childbearing could inflict. The language of risk and contingency appeared repeatedly in women’s writings and in medical writings from the past, with striking parallels to what we hear articulated by contemporary Gambian women. Early twentieth-century letters to the Women’s Co-operative Guild (1916) reveal sobering views from working-class English women of the risks that childbearing could spell for their lives. Obstetrician Joseph B. De Lee (e.g., 1913), who began a campaign to alleviate the appalling rates of maternal and neonatal mortality in Chicago at the turn of the twentieth

century, went so far as to describe the natural elements in childbearing as pathological and hence as requiring professional obstetricians.’ Not surprisingly, many writers today see De Lee as the root

of American women’s troubles in maintaining control over their birth experience. Indeed, he and other obstetricians of his time identified the “midwife problem” as one of the contributors to high mortality rates among women and children. However, a closer look at his texts suggests that the greater force of his critiques was equally directed at general practitioners who botched deliveries they were not qualified to attend. Further, his remarks about the pathologies

of nature were often directed to politicians who argued to move public funds elsewhere by dismissing childbearing women’s suffering and risks of death as their “natural lot” (Bledsoe 2001). For De Lee, the solution to reducing the sizeable mortality rates for women and children that prevailed was to professionalize childbirth, wresting it from the grasp of a nature he found menacing. He did this in part by continually extracting medical funding from the grasp of surgeons, whose share of the medical resources inevitably drew the enmity of other physicians. Whether we look at birth through an African cultural vision, our own historical impetus for the rise of obstetrics as a medical specialty,

or even through the lenses of international metrics, what emerges is a vision of birth as an event of potentially mortal consequence. The conviction among middle-class US women that birth is an event

to be experienced to the full, freed from any external attempts to

The Dtalectics of Disruption 55 regulate or disrupt it, inverts this image. As we turn to the disruptions that preoccupy US middle-class women as they contemplate the birth of a child, it is vital to keep in mind both the dangers that reproduction can entail and the science that has allowed us to imagine as common sense a safe, uninterrupted, reproductive life trajectory.

Nature Versus Normality in US Childbirth In the US, the concept of natural birth is fraught with definitional problems, as are notions of what would disrupt it. A vast wealth of literature in anthropology and the contemporary social science corpus, enriched with feminist thought, has grown up in recent decades around precisely these questions. From the outset, this literature has sought to challenge comfortable ideas of naturalism in childbearing

and has provided an abundance of theoretical and empirical work in childbirth.'® It has been focused on three related themes: where perceptions of nature arise from, whether from women, from medical specialists, or the public at large; power relations that position women within particular medical, technological, and knowledge systems that can shape their reproductive choices; and the tension between wanted/needed procedures versus potential undesired, unnecessary, or even harmful effects of technological intrusions and medical surveillance.'' Paralleling these efforts has been a stream of work in history of equal depth and insight.'* Though the findings are by no means convergent, what is seen as natural clearly varies relative to time and circumstance.” The shift to overwhelmingly benign birth outcomes over the past century has been accompanied by a change in understanding about the roles of medicine and what is natural—and, accordingly, what is disruptive—in birth. The dichotomous model that prevails throughout the popular as well as scholarly literature today was well cap-

tured by Davis-Floyd (1996), who described a tension between models of the “technocratic body,” which depicts the female body as a defective machine that requires technological intervention to complete the birthing act, and the “organic body,” a vision of the body and birth as elements of an organic system that more faithfully reflects women’s lived experiences. In the popular media, the most defining element of a natural birth is vaginal delivery. Many women also think

of natural birth as an event conducted without forceps, incisions, anesthetics, or monitoring equipment that might interfere with their effort to move or to express pain and emotion.'* The best way to

56 Caroline H. Bledsoe and Rachel F. Scherrer ensure natural birth is by giving birth at home with a midwife in attendance. Next in order of preference is a free-standing birthing center or a hospital birthing suite. A term sometimes used alongside the word “natural” when discussing reproduction is “normal.” According to the World Health Organization (1997), a normal birth is (with brackets in the original): “spontaneous in onset, low-risk at the start of labour and remaining so throughout labour and delivery. The infant is born spontaneously [without help] in the vertex position [head down] between 37 and 42 completed weeks of pregnancy. After birth mother and baby are in good condition.” In popular US usage, the meanings of natural and normal in childbearing overlap, but they are not fully synonymous. Pregnancy and labor are often referred to as normal in an en-

dogenous sense: there are no signs of trouble in the processes of pregnancy and labor that could spell the kind of danger that could end in miscarriage or the operating room. The application of “normal” thus seems to be a retrospective one: a hindsight assessment about an outcome that resulted in a healthy mother and child. “Natural,” by contrast, refers to the manner in which an attendant conducts the birth and by extension, to the degree of control a woman retains over the birthing process. As long as a pregnancy is proceed-

ing without disruption, the question of whether it will end normally, especially when the pregnancy advances to the point of labor,

seems to draw less interest from women than whether it will end naturally. American women’s assumptions of a healthy, surviving mother and child make the possibility of apprehending birth as a pathological event a challenging stretch. The popular sources now overwhelmingly depict birth as a peak life experience of physicality for women, bringing a sense of achievement at fulfilling a natural act, so much so that the baby seems to play a secondary role. The failure to achieve

all the elements of this experience is viewed as personal failure.’ The relationship between natural and normal is particularly telling in descriptions of labor and its outcome. This tension has given rise to a series of paradoxes that constantly return us to contrasts between images of maternal risk in rich and poor countries. In the US, where the default assumption of pregnancy and birth is normality, a natural lifestyle during pregnancy and an intervention-free, natural birth are often described as the cause of a normal outcome: healthy mother and baby. The same tensions that can so illusively shift the frames of normal

and natural create the same tensions over elements of a stream of

The Dtalectics of Disruption 57 natural action and what are “interventions” in the obstetric context. Coming from women, intervention connotes something unwanted and unplanned: not natural. At the same time, all the techniques that

licensed childbirth attendants enact, no matter how natural their character, are learned, monitored, and subjected to standardized schemes. No one gives women ice chips without training and institutional oversight, and birthing ball techniques receive detailed attention in manuals for doulas, paid labor coaches who offer massages during labor and mediate for women with the medical staff. Birth in the past occurred with fewer forms of intervention than those we would recognize in the current medical repertoire. But because a normal outcome was by no means assured, the idea of the natural often connoted danger. Today, with a normal birth (safe outcome) assumed, emphasis has shifted to the process itself. Natural birth (no interference) has become the goal. Whether the agent is external or the woman herself as an actor socialized in the reproductive customs of her society, the entire span of pregnancy, from onset to termination—and often deep into the pre-conception phase—is now subjected to preparation, regimen, and monitoring. It is certainly true that some interventions may cause more harm than they alleviate. Amniocentesis exams that can precipitate miscarriage and intense x-rays on pregnant women that occasionally produced deformities in fetuses are two examples. At the population level, however, it is more likely that the battery of screenings and interventions as well as vitamin supplementation, exercise, and nutritional discipline that US women undergo in the prenatal period now contribute to high rates of birth normality by selecting out potential problem cases for special attention. The more systematically

that preemptive measures such as monitoring and screening are conducted to detect problems early, and the more vigilant a woman is in maintaining adequate nutrition, exercise, and sleep, the more likely the delivery itself may proceed naturally, without a flood of interventions at the time of delivery. That is, the more that births appear to be normal in the population as a whole, the more that monitoring/screening specialists and technology may have intervened on the more invisible, and less overtly disruptive, front end to make this so.'° The points of incongruence emerge again when juxtaposed against

debates about high-tech infertility treatments. Although few US women can afford more than modest levels of treatment and many insurance companies do not cover such treatment, some countries now see infertility care as a right to which all women desiring chil-

58 Caroline H. Bledsoe and Rachel F. Scherrer dren should be entitled (see, e.g., descriptions of Israel state policy in Kahn 2000). On the one hand, infertility treatments, then, like medical treatment at the time of birth, represent an excess of intervention; on the other, they represent a fundamental right. If natural refers to delivery and normal to outcome, it is precisely

this line between a normal-outcome and the natural process by which women hope to conduct labor that, we believe, spawns so much conflict. While a healthy mother and baby are the assumed outcomes of a delivery, outcomes also help retrospectively to label the process. If the outcome was normal, then the process must have been natural—or at least it should have been. If the woman was on good terms with the doctor, and both agreed on the types of actions that were appropriate and when they ought to take place, then the process must have been natural. Such relationships, often inscribed formally through a “birth plan,” and the natural births they are assumed to produce almost inevitably follow meticulous planning and careful choreography well in advance of the actual birth event itself. If, on the other hand, the woman disagrees with the actions undertaken by her doctor, she is more likely to label them as interventions and the process as not having been natural. With a normal—i.e., healthy—outcome assumed, the character of naturalism in a birth becomes a descriptor of the social dynamics between a woman and her birth attendants. We turn accordingly to the process of birth itself and its current sources of disruption in the US.

Professionalizing Nature: Medicalization and the Disruption of Reproduction If the popular media can be said to be at all representative of women’s

views, then American women have come to think of the influence of biomedicine on reproductive experience as what we might call the “professionalization of nature”: attempts by state and medical authorities to institutionalize childbirth and populate the ranks of practitioners with licensed specialists who provide standardized high-

tech interventions. The medical research professions that surround childbearing continually generate techniques and products to reduce mortality and morbidity rates among mothers and newborns. They also continually reproduce new specialty offshoots of themselves, in genetic testing, infertility treatments, maternal-fetal medicine, ultrasound technology, and neonatal medicine (hematology, neurology, surgery, cardiology), and more. Women want the security these devel-

The Dtalectics of Disruption 59 opments offer in case of life-threatening emergency or unbearable pain.'’ But innovations like these that appear to colonize nature for professionals have drawn enormous ambivalence. Medical interventions are feared to set in motion two related disruptions in what women see as natural processes. One of these is the potential for a suppressed birth experience. While birth is seen as a natural process that should transpire at a pace and in a manner set by a birthing woman, preferably in the context of her home and family, birth is removed to the hospital, where professionals and doc-

uments that supersede individual rights may prevail, and birth becomes subjected to standardizing metrics, invasive IVs and monitors,

soporific medications, and systematic management. Many women have drawn attention to the drawbacks of these techniques (see also, e.g., Odent’s critique of “industrialized childbirth,” 2002), but what they most fear is losing control over the birth event and with it, the chance of achieving what they see as a natural birth. Particularly feared are medications that may make them lose control of their

senses at the key moments in which awareness is needed. With blunted senses, they will miss the full range of emotions and the sense of achievement that they have been told should accompany their birth experience. In this context, then, disruptions refer less to unpredictable events that can spell health risk, as African women perceive them, than to the disruptions that the loss of control to medical authority may spawn. Closely related to these potential disruptions in what should be a natural process is a second one: a failure to bond with the baby, to form an emotional attachment by gaining immediate contact and

sustaining it throughout the hospital stay. This phenomenon has been in the public eye for over three decades (Klaus et al. 1972; Klaus and Kennell 1976; Eyer 1992; Lamb 1982; Anisfeld 1983; Klaus et

al. 1995), and it has taken firm hold in popular culture. According to a Fit Pregnancy article, bonding serves as the psychological ballast

children need as they set out to explore the world.'® An especially clear description of the perceived need for bonding, or “attachment parenting,” comes from an issue of Awake! (22 December, 2003), the main proselytizing pamphlet of the Watchtower Bible and Tract So-

ciety of New York, an arm of the Jehovah’s Witnesses. Its article “What Babies Need and Want” (pp. 4-7) embodies a blend of emotion, spirituality, and science: It has been established that during the first year or so, the infant forms an emotional attachment to an adult caregiver, generally his mother.

60 Caroline H. Bledsoe and Rachel F. Scherrer When securely bonded, the baby relates better to others than do babies

who do not enjoy the security of the parental bond. Such bonding with his mother, it is believed, needs to be in place by the time the child

is three.... From the time of his birth, the newborn needs tender care, including gentle strokes and skin-to-skin contact. Some physicians believe that the first 12 hours after birth are crucial. They say that what mother and child require and want most right after the delivery is “not sleep or food, but to stroke and snuggle and to look at and listen to each other” ... without a loving parental bond, an infant may literally wilt and die, [or suffer from a forever disorganized brain].

Bonding has a deep emotional pull in the contemporary US. Women are urged to get the new family off to a close, enduring start by establishing an immediate nurturing tie with the infant just after

birth, sometimes before the umbilical cord is cut. Mothering and pregnancy magazines are replete with expressions, often quantitative, of the temporal and spatial prerequisites of bonding. The faster the mother and baby (and the father, if present) can establish close con-

tact—the mother receiving the infant immediately after birth, wet and crying, umbilical cord attached, placing it on her chest and beginning to breastteed—the better the chances of setting the child securely on a healthy emotional course in life and a firm place in the family. With the risk of a disrupted or improperly formed bond with the mother, the loss of the smallest window of bonding opportunity after the birth may set the stage for future pathology for both the infant and the new family unit. Post-1960s women have been told that they should make decisions on how this most vital event will transpire. If they lose control in a moment of weakness or pain and yield to the authority of a doctor, the birth may begin to head down the path toward the instruments and anesthetics that will disrupt a rewarding birth experience and block their efforts to seize the postpartum window of opportunity to gain immediate, unimpeded contact with the baby. In these descriptions, nature represents close emotional, spatial, and temporal proximity, and disruption is separation, through the insertion of professionalized biomedicine.

Reclaiming Control Naturalizing the Professions

Seeking to prevent unwanted disruptions in the birth experience, American women in the last few decades have made demands to

The Dtalectics of Disruption 61 decrease the medicalization of childbirth and naturalize the birthing professions. Reactions against extreme forms of medicalization and the license that it often takes have sparked intense struggle for control over the birth process, as feminist writings on reproduction have well described.'” In response to women’s concerns, or what those on the business side of health see as “consumer demand,” the professionals who create the interventions that produce safe birth outcomes now try to make them seem as least disruptive as possible, blending them into the images that American women consider to be natural: that is, as mon-interventions. Transformations in the identity and professionalization of practitioners are pivotal to the naturalization of childbearing in the US. Midwives, whom De Lee and others fought so hard to eliminate, have become a centerpiece of women’s strategies to attain a natural birth, to the point that they have become staples of the hospital delivery room.*? With such vast changes occurring throughout the profession, however, it would be difficult to claim that particular practitioners are necessarily identified with one procedure or another or with any particular degree of naturalism. Compared to obstetricians, midwives tend to use fewer interventions such as anesthesia and episiotomy, although there is again a great deal of screening in the background

that allows a midwife-attended birth to proceed as planned: the greater the perceived risk of a delivery, the more likely a physician will attend it. But although a physician must provide backup, a midwile may attend an entire pregnancy and birth, and some states allow midwives to perform home births for low-risk cases. Certified

nurse midwives are trained and licensed to handle nearly everything an obstetrician can do, except surgery. Even doctors practice a wide range of what can be interpreted as naturalisms. Many readily permit, or even recommend, alternative therapies, and some perform water births. Even surgical techniques performed by physicians, such as the Cesarean section, the procedure that is invariably described as most extreme among birth interventions, edge continually closer to nature. Until the beginning of the twentieth century, the Cesarean was a serious operation, with practitioners often being competent in abdominal surgery as well as obstetrics. Today, anesthetics, antibiotics, and suture techniques produce less damage, reduce the risk of shock and infection, and allow shorter recovery time. New techniques are constantly being devised. One of the most radical examples is the Misgav Ladach technique of Caesarean. Once the abdominal skin is incised, manual separation— finger dissection—is employed to divide certain tissue layers (Mathai

62 Caroline H. Bledsoe and Rachel F. Scherrer and Hofmeyr 2005). The reported advantages include shorter operating time, less use of suture material, minimal blood loss, less postoperative pain, and less chance of wound infection than with more conventional techniques. The significance of this development is strikingly captured by Federici et al. (1997): “... the speeded recovery, with early ambulation and resumption of drinking and eating ... makes the Cesarean section delivery closer and closer to natural childbirth.” As for women, they see themselves as strong and in control. But to create the naturalisms that they hope will lead to normal birth, they express a need for choice among options. Birth is big business in the US. Major hospitals and private obstetrics practices offer an enormous range of services, from midwives and water births to surgery and neonatal intensive care units. Because natural childbirth is seen as most likely to be achieved in a home birth, hospitals attempt to strike a compromise between home birth and a clinical facility by building in-house birthing suites. Birthing suites have soft pastel colors, curtains, wood-paneled cabinets, hot tubs, kitchenettes, pull-out sofas, and facilities for piped music. Birthing balls, skin oil, and hotspot labor socks are available. Women in birthing centers/suites can move around, invite family and friends, and bring in pictures, posters, and plants. Emergency instruments and lighting structures may lie in readiness behind the wood panels, and specialized help can be on the spot within minutes, but as long as things are proceeding without adverse events, the appearance remains that of a bedroom. Words like “choice,” “wish,” and “experience” surface repeatedly in pregnancy and birthing materials. Echoing the language of advertisements for shopping or vacations, even Mothering Magazine (e.g., Nov/

Dec 2003: 85) in promoting the book Having a Baby, Naturally, by publisher and editor Peggy O’Mara, claims to have “captured an audience of educated women who appreciate its ‘we’ll inform, you choose’ approach to parenting.” Choice is a major consideration as well in selecting the professional who will oversee the pregnancy and delivery. One of the ways in which women try to make childbearing a natural event through choice is by managing whom their professional attendants will be in order to ensure their own ability to shape the birth event in a particular way. This strategy is readily visible in the process of “doctor shopping,” when women search for physicians whose birth practices align with their own ideal birth experience. Magazines such as Fit Pregnancy advise women explicitly to inquire about a prospective obstetrician’s rates of Cesarean section and episiotomy and, for those

The Dtalectics of Disruption 63 Cesareans and episiotomies she performs, what factors prompt her to perform them.*' And appearing repeatedly in magazines on childbirth is advice for women to get a second opinion if they encounter a physician—or a midwife or a doula—with whom they disagree. In summary, then, the explicit goal of childbearing in the US in the past was health normality, and in much of the developing world it remains the same. Today in the US, as long as health normality remains the predicted outcome, the goal shifts to the experience itself

of childbirth, and the interventions that can save lives are tucked into the invisible front end of pregnancy or behind wood-paneled walls, in pursuit of the goal of naturalism and the control that is seen as the key to achieving it.

The Professionalized Patient Consumerism would be a hard label to deny for women who shop for birthing suites, organic maternity clothing, and medication alternatives, and as the birthing professions undergo naturalizing makeovers to cater to their interests in naturalism.’ The more interesting point that emerges, however, is that as women try to naturalize the professions, they simultaneously try to gain unprecedented degrees of professional knowledge about the technicalities of childbearing, with much of their effort aimed to ensure that childbirth remains as natural as possible. Seeking to regain control over their birth experiences, many women become “professionalized patients,” sometimes achieving remarkable fluency in the medical and technical language surrounding their own case, simply by exploring the vistas opened up by the internet. Armed with this knowledge, they lobby vigorously to recover elements of what they consider natural. At the same time that women are putting pressure on the childbearing professions to undergo naturalizing makeovers, therefore, they themselves, in their quest to achieve natural birth, are effectively professionalizing the nature they seek. Contemporary Western women are becoming far more knowledgeable about the technicalities of birthing than any cohort in history. Many become highly literate in the process of birth through sources ranging from self-help books and magazines to the internet, all offering advice on how to take charge of birth by making contingency plans, striking agreements, and buying products. They embed their assertions about desires for natural birth and the importance of control over birth in a wide body of technical practice and con-

64 Caroline H. Bledsoe and Rachel F. Scherrer cepts. And they consume articles and advertisements in magazines such as Fit Pregnancy and Mothering that seek to empower women and educate them about technical medicine. Regardless of the “value” of such efforts, learning the language of technical expertise and knowing a range of options is indisputably key to legitimizing one’s desires

to practitioners. And many practitioners and health organizations explicitly encourage this. A Humana website advises women contemplating pregnancy to “become an expert on expecting,” albeit from the proper professional lines of authority: “Once you're pregnant, nearly every woman you see will offer you advice—whether you ask for it or not! While family and friends can offer great support, be sure to get your medical information from reliable sources. Visit your doctor regularly and do your research. The health encyclopedia on MyHumana ... contains lots of doctor-reviewed information about planning for a healthy pregnancy” . The role of self-education in acquiring professional knowledge is most clearly highlighted in cases where a woman finds herself facing special conditions. Because they are less common and therefore less likely to be discussed in more general formats, these issues require her to delve more deeply into resources closely associated with medical, rather than “commonsense,” knowledge. They edge their way toward knowledge domains commonly associated with profes-

sionals and, armed with such knowledge, act in ways that further complicate the distinction between patient and professional. The most salient resources that women use for information on special conditions are internet chatrooms devoted to the outcomes and complications of pregnancy. Their voices reflecting shock, skepticism, anger, hope, and relief, participating women may use the technical language they learned from their obstetrician or midwite earlier the same day. On the internet, they post queries about their diagnoses,

seeking reassurance and advice from other women in their situation, as well as technical information from medical professionals who might respond. Here is an example from a woman from as far back as 1997, seeking advice about “placenta previa,” a subject she has already researched in detail, and asking to meet a practitioner experienced in her specific condition: Hello, I’m a pregnant lady (21 weeks) who was diagnosed by ultrasound with placenta previa at 16 weeks. I’m looking for information, especially first-hand accounts from people who do these difficult deliveries. Specifically I’d like to know midwives’ opinions on the fol-

The Dialectics of Disruption 65 lowing: when will you attempt vaginal births, in what cases do you defer to doctors, is a C-section really necessary for partial previa (like my doctor insists on). I have educated myself about my condition, and now I'd like to hear about your experiences and the judgment from medical practitioners who are more non-interventionist. Iam in San Francisco and would love to meet with a midwite(s) who has experience[d] delivering babies for women with partial/marginal placenta previa.’

Other women respond with their own experiences and knowledge, sometimes providing references from medical sources such as the American Journal of Obstetrics @ Gynecology. Physicians and midwives

who respond may qualify or contradict the diagnosis and advice a woman has been given. (“Stop worrying!” exclaims one physician. “Technically there’s no such thing as placenta previa until the third trimester.”**) Information can be erratic and questionable, debates can be fierce and inconclusive, and conversations can wander. Women

triangulate among these and many other sources of information, incorporating fragments relevant to their own cases, and taking up the search for future women heading down these new pathways. Not all women go to such lengths as these, and many women remain cut off from both state-of-the-art science and a broad range of choice by resource limitations. But the middle-class women whom physicians increasingly encounter are enormously knowledgeable, if only in a narrow range of topics relevant to their own conditions, about the substance and the technical language of childbearing.

Birth Plans: The Legal Defense Almost as pronounced in its consumerist thrust is the birth plan, the principal means by which an American woman now tries to ensure that a birth will proceed according to her wishes. Once again, however, the consumerist character of the birth plan is in some ways a

distraction from its far more interesting impetus that parallels to a remarkable extent the rise of medical professionalism: the rise of “legal professionalism” among women to achieve naturalism.

Birth plans have become the rule rather than the exception in middle-class American births within the last two decades. Birth plans

can be drafted individually or copied from books or the internet. Those found on the internet usually offer a series of detailed suggestions, each followed by a box to check if it is desired: no medications

66 Caroline H. Bledsoe and Rachel F. Scherrer unless requested, certain music to play, things to say to the woman to convince her not to give in prematurely to pain, whom to allow into the delivery room, whether the umbilical cord should stop pulsating before being cut by the father, where the baby is to be placed for what purpose and at what moment, conditions under which the baby may be taken from the room, and so on. The tone of the birth

plan can be friendly and respectful, or it can have a transparent legalistic mistrust. The woman is advised to discuss the birth plan

thoroughly with her doctor and partner and, once agreement is reached, have all parties sign. If the doctor is not in agreement with her desires, she should look for another doctor. What about the other principle party to the birth plan contract— the physician? All indications are that physicians seek joyous experiences for their patients, and that they are devastated by a death or an injury. But physicians also have high on their minds the kinds of disruptions to health that bring risk of medical liability and malpractice suits, and not just for themselves but for all the obstetricians in the practice who share insurance premiums and operating costs. As noted earlier, obstetrics has one of the highest rates of litigation among the medical fields, whether measured by proportion of lawsuits per total number of cases or total payouts (see Richards and Rathbun 1999: 391). As rare as a lawsuit might be, physicians feel they must practice defensive medicine against the possible claim of a patient-turned-adversary. To this end, they employ preemptive measures such as fetal monitors, IV drips, and Cesareans that they realize, as much as anyone else, can be necessary. They also try to filter out cases of risk. One of the main tools for doing this is—and this was a complete surprise to find—the birth plan. The birth plan, which is described by maternity magazines as the heart of the woman’s defense against measures that would interfere with her birth experience, is described by Richards and Rathbun as key for the physician as well. For the physician, however, the birth plan provides a framework for “resolving inconsistencies between the patient’s expectations and the risks of her particular pregnancy,” documents the agreement

between doctor and patient, and provides a record that the doctor clearly explained the risks entailed by the specific delivery desires the woman has chosen (392). The birth plan “will not relieve the physician of liability for negligence. It will, however, bolster the physician’s

claim that certain injuries were foreseeable risks of pregnancy and not iatrogenic birth injuries” (Ibid.). The documents of both women and physicians are called “birth plans,” but their thrusts are entirely different. One is designed to

The Dtalectics of Disruption 67 naturalize the process of birth, minimizing the appearance of medical intervention by emphasizing control over the birth event by a woman whose knowledge in some domains may rival that of the physician. For a woman, the birth plan is a highly scripted social contract with the doctor to stay out of the picture as much as possible. For the doctor, the birth plan establishes the physician’s license to hover: to keep potential catastrophies of nature under professional control and minimize the risk of a lawsuit. Everyone proceeds down the choreographed birth-plan semblance of nature as long as possible; the illusion breaks down when the professional, fearing a disruption of normality, intervenes to disrupt the natural process the woman has designed. The birth plan is not a legally binding document, but its thrust is surprisingly parallel to one. It combines the languages of legal contract and medicine to maximize the chances of preserving control over the birth experience, ensuring that bonding will take place by minimizing intervention. Much as a woman cultivates the knowledge and vocabulary of a medical professional to confront a medicalized establishment, therefore, she uses the birth plan as her “legalistic”

weapon against the growing legal understructure of the medical world. If this assessment is correct, then to the extent that the medical world ramps up its legal apparatuses alongside its technical in-

terventions, the importance of the birth plan as an instrument of popular health is likely to intensify.

The Dialectics of Disruption Contemporary concerns in the US about the control over birth and, conversely, the non-naturalisms that obstetrics imposes can be understood through Simmel’s classic works on the paradoxical relationships

between individual and society. Simmel (1910-1911) pointed out that meaning arises not just from the mind, as Kant argued, but from

social interaction. Individual elements of potential meaning “undergo their synthesis into the unity of a society only through a process of consciousness which puts the individual existence of the several elements into relationship with that of the others in definite forms and in accordance with definite laws” (Simmel, 1910-1911). Equally important to Simmel is the role of difference or conflict (1971). Society, he concluded, is possible because of differences among individuals: differences that may be manifested as conflict as individuals sort out their roles.

68 Caroline H. Bledsoe and Rachel F. Scherrer The confluence of all three elements—meaning, interaction, and conflict—captures precisely the dynamics of contemporary US childbearing. Birthing is depicted culturally as an individual achievement, one in which a woman should be in control of her actions. For this, women attempt to present themselves as professionals, medical as well

as legal: as close as they can come to being equals with their medical peer doctors, informed and trained to evaluate their qualifications. But with “control” being such a crucial issue in cultural ideals of childbearing, the greater the expectations that a scripted birth plan creates, the greater the surety that the woman will fall short of her ideal. Some elements will go wrong, and with them the hope of remaining the equal of the professionals who deals with her birth. This relegates obstetricians, who have the power to disrupt a naturalism but also to save lives if something goes wrong, to being the inevitable targets of opposition. The elements of logic are arrayed as follows. During the times when nature could be so injurious and produce such suffering, women welcomed efforts by obstetricians to professionalize nature. Those who did not wish to spend resources on the problems reproduction could entail, however, declared that women should be left alone to give birth because their safety needs were inconsequential. As childbearing became safer and more benign visions of nature arose, undesired outcomes of birth for women came to consist of a bad experience and psychological damage from missed bonding opportunities. Today, with safety taken for granted, the new goal has become in some sense the process itself: the experience of childbirth. Women argue they should be left alone, not because their safety needs are inconsequential, but because their experiential needs demand it and they want to take the lead in birth decisions. They now seek to naturalize the professions, taking the lead as agents. The fact that women have gained near-professional knowledge about birthing, at least in the pathways that their own pregnancies seem to be moving, and their efforts to take the lead in their birthing decisions, makes obstetricians uneasy partners at best and opponents at worst. If indeed meaning and value arise from social relationships, as Simmel contends, then all this suggests that it is not the intrinsic things that obstetricians do that are interventionist or non-natural. It is rather what obstetricians represent to women: the specter of failure. The appearance of an obstetrician on the birthing scene implies that the woman has failed to give birth in the way she wanted; she has lost control. If it were science and medicalization that produced what women find most objectionable about obstetricians, then this would be inconsistent with the efforts in articles and advertisements

The Dtalectics of Disruption 69 in magazines such as Fit Pregnancy and Mothering that seek to empower women by educating them about medical choices. Articles in these magazines are grounded strongly in the language and techniques of science. Even Mothering Magazine, with its pronounced mis-

trust for medicalization and high-tech science, uses the language of the profession it opposes. While difference, as Simmel observed, makes relationships possible, contemporary US obstetricians face a difficult situation. Their clients feel strongly they should not be entering a relationship, especially one with a professional who is so consistently associated with pathology, but rather conducting an individual act. Simmel’s two forms of individuality (1971) are instructive for sort-

ing out these strands. The first refers to a sense of freedom and responsibility for oneself; the other implies the process of separating oneself from others—“individuating.” US ideals of birthing stem directly from dualisms like these. In contemporary American childbear-

ing practices, the first form of individuality applies to how women describe their actions as they contend with the physical challenges of birth. The ideal of birthing is depicted as an individual achievement: a transformative life experience, a pivotal moment of selfrealization. A woman in control can invite whom she likes into the birthing room, forbid the use of certain implements, position herself for best comfort and visibility, and maximize contact with the infant after birth. The second form, “individuating,” describes how the woman sees birth as natural because it is an individual achievement and tries to distance herself from the doctor. Engaging an obstetrician entails not only a social relationship but a relationship with a person whose role is defined as the antithesis of nature. If nature is defined as whatever obstetricians do not do, then the degree to which a birth can be called natural is inversely proportional to the degree to which an obstetrician appears to play a role. The answer to why obstetricians are described with such antipathy thus lies not in the substance of what obstetricians do that is unnatural—whether the use of sharp incision, forceps, and medications that blunt sensation, or anything else—but in the fact that obstetricians represent a woman’s loss of control over the birth event. Obstetricians are thus perceived as the chief source of disruption in the birth event, backed by the licensing power of medicine and the law. And yet it is not what obstetricians do that women find problematic but the fact that they are the people who step in when the woman is seen to have failed. For the same reason, midwives, doulas, and birth-

ing partners can be associated with natural childbirth less because

70 Caroline H. Bledsoe and Rachel F. Scherrer of the techniques or instruments they use (and even though their actions are standardized in training, engineering, and licensing) than because they are not doctors, who represent failure, against which legal medical authority must prevail. The nature that De Lee confronted in Chicago at the outset of his

career was unpredictable and injurious, and it led to unnecessary deaths, in much the same way that risks of mortality and morbidity continue to take tolls on so many women and infants in the developing world. Today, because of medical and technological advances that have brought so many of the life-threatening complications of

childbirth under control, the naturalism in childbirth that women now envision is not only benign but desirable. But to the extent that childbearing remains less about nature than control, animosity will likely continue to be directed at doctors because they represent failure to attain nature, and animosity will continue to be directed at obstetricians, regardless of what they actually do or what their gender is. Furthermore, women’s efforts to retain control will have to continue to speak in the terms set by the medical and legal establishments with which control is contested.

Acknowledgements Earlier versions of this chapter were presented at Brown University, Harvard University, the University of Chicago, and the Max Planck Institute for Demographic Research. Thanks to the many people who have offered their thoughts along the way, especially Catherine Lutz, Gunnar Andersson, Greg Thompson, and Marcia Inhorn.

Notes 1. Davis-Floyd (1992: 276-7) was among the first social scientists to observe this trend, pointing out that the entrance of women into the field ol obstetrics seemed to have little impact on the conduct of birth because of, among other things, the thorough training in medicalized birth they receive. Whereas this is undoubtedly true, her further speculation that women obstetricians felt pressure to conform to medical practices because of their numerical minority would have to be revisited today, a possibility she herself raised. 2. Especially in anthropological works on reproduction, nature is a concept pervaded by ideas of culture and power (Ortner and Whitehead 1981; Collier and Yanagisako 1987; Lock 1993; Brettell and Sargent

The Dtalectics of Disruption 71 1993; Yanagisako and Delaney 1994; MacCormack and Strathern 1994; Strathern 1995; Inhorn 1996). 3. For related approaches, see Canguillem (1991) and Foucault (1994), as well as a number of seminal works in the anthropology of reproduction (Becker 1997; Rapp 1999; Inhorn and Van Balen 2002). 4. For an outstanding discussion of professionalization, see Tatlock’s (2001:

240) analysis of a seventeenth-century composer tn Brandenburg, Germany.

5. These studies have laid a foundation in ethnographic, textual, and historical aspects of US childbearing, concentrating on (for example) the meaning of contraceptives in contemporary America (Bledsoe 1996) and an agency-based theoretical treatment of choice among birthing women in the US (Bledsoe, unpublished ms.). An entirely different endeavor, an in-depth history/ethnography, has explored the founding of obstetrics in late-nineteenth- and early-twentieth-century Chicago (2001; 2002a, Ch. 9; 2002b; in prep.) based on information from several archives in the US, and from medical and public health texts, medical instructional films, and interviews. 6. See Murphy-Lawless (1998) for a highly cogent discussion of risk, and Johnson-Hanks (2006) for penetrating discussions of risk that emerge from Cameroonian women’s descriptions of the dilemmas and imagined solutions as they conduct reproductive lives of personal contingency. 7. Rates of maternal and child mortality have improved in many countries in recent years, though the greatest gains have come in the West and the fewest in Africa. 8. Concerns for problems of maternal and child wellbeing in poor countries have spawned an enormous industry centered on reproductive health and aimed at professionalizing reproductive health services in the developing world. The International Conference on Population and Development in Cairo (1994) brought about a decisive shift in professional discourse away from overt concern with reducing child numbers and toward concerns for making mothers and babies healthy, giving rise to international programs such as the “Safe Motherhood Initiative” (1987) and the “Making Pregnancy Safer Initiative” (2000). New metrics emerged rapidly to train professionals in international standards of health diagnostic and management techniques. For developing countries, emphases now include education for women, gender equity, male responsibility for contraceptive use, and the integration of traditional birth attendants into national health care systems. (Recent examples of WHO publications and training packages can be found at . 9. See Leavitt (1988) for an insightful analysis of DeLee’s work from the perspective of preventive medicine. 10. See, for example, Jordan (1980), Ginsburg and Rapp (1991), Martin (1992), Jordanova (1995), Davis-Floyd and Sargent, eds. (1997), Kitzinger (1997), and Oakley (2005).

72 Caroline H. Bledsoe and Rachel F. Scherrer 11. See, for example, Sargent and Stark (1987, 1989), Davis-Floyd (1992),

Greenhalgh (1994), Browner and Press (1995, 1997), Davis-Floyd

(1996), Sargent and Bascope (1996), Mitchie and Cahn (1996), Lazarus (1997), Rooks (1997), Caspar (1998), Franklin and Ragoné, eds. (1998), Murphy-Lawless (1998), Edwards et al. (1999), Morgan and Michaels, eds. (1999), Holmavist (2000), Rapp (1999), Strong (2000), DeVries et al. (2001), Halek (2000), Bledsoe (2002a), Inhorn and Balen, eds. (2002), Kornelson (2005). 12. See, for example, Wertz and Wertz (1977), Sandelowski (1984), Borst (1994), Fraser (1998), Shorter (1997), Hunt (1999), Leavitt (1986), Moscucci (1993), McGregor (1998), Mitchenson (2003). 13. Canguilhem (1991), in his insights into the dialectical relation between the normal and the pathological, emphasizes the quality of relativity in normality but takes it a step further. By normality, Canguilhem refers not to an absolute, irreducible state nor even to a statistical norm but to the ability of an organism to adapt to changing circumstances. Because the organism constantly grows and develops—and because the environment itself changes—the organism must continually establish new homeostatic states to accommodate new circumstances. “Health,” a specific kind of normality, consists in the capacity to adapt, to transcend the current normal state; pathology arises when the fit between the organism and the environment is no longer adequate. 14. Obviously there are exceptions, as in the cases of women who declare well before they go into labor that they want painkillers. More extreme cases include women who schedule labor induction or Cesarean section because of conflicts with work or (allegedly) movie stars needing a slim figure by the time of the Academy Awards (“Too Posh to Push,” National Post [Canada], 8 August 2002). 15. Mitchie and Cahn (1996) trace the logical implications of feminist dis-

course about natural birth, pointing to a myriad of subtle ways in which women who undergo Cesareans or any form of intervention are branded as failures. 16. See De Vries and others in Chalmers et al. (1989). 17. While women voice mistrust of, tf not anger about, medicalization and its attendant medical and emotional risks, in Fit Pregnancy’s regular column “Birth Stories,” a stock theme concerns women who had determined to conduct labor naturally but were unambiguously grateful for its intervention when their own or their babies’ lives were suddenly in danger. 18. See “The Science of Attachment: The Biological Roots of Love,” by Lauren Lindsey Porter (2003). 19. Control is a highly salient concern to women considering alternative measures to reduce pain during birth. Sargent and Stark (1989), in their study of concepts of pain and childbirth in Dallas, found that women saw control as the key factor to coping with pain, although the great majority seemed to see the self as most in need of control (anticipated

The Dtalectics of Disruption 73 physical and emotional responses to birthing events), rather than the environment. 20. Although US women have a tremendous range of choice in birth practitioners, sharp inequities prevail. Some women who use midwives do so because they are poor and live in states where physicians flee high premiums. In contrast, Hollywood royalty who use midwite-assisted home births have obstetricians on call and emergency backup close by in state-of-the art hospitals. Still, the fact that those with the greatest range of intervention options seem to hold most strongly to the notion that reproduction is natural and hence should be left alone merely underscores the force of naturalism convictions surrounding childbirth. 21. See “Having an Episiotomy,” by Laurie Tarkan (2004).

22. See Sargent and Stark (1987) on contradictions surrounding consumerist naturalisms vs. technological intervention that emerge most sharply in practices of Cesarean birth. 23. .

24. US doctors and midwives seem to respond less often than those in other countries. Other internet sites warn professionals to avoid internet practice because of the potentials for liability.

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Chapter 2

DESIGNING A WOMAN-CENTERED HEALTH CARE APPROACH TO PREGNANCY Loss: LESSONS FROM FEMINIST MODELS OF CHILDBIRTH Linda Layne

Introduction Meo and stillbirth are twoMiscarriage, of the mostalso common forms of disrupted reproduction. known as spontaneous abortion, refers to a fetal loss before twenty weeks gestation and is by far the most frequent type of pregnancy loss. About one out of four conlirmed pregnancies ends in miscarriage, resulting in nearly one million fetal losses in the US per year (Ventura et al. 2001: 1). Most miscarriages occur in the early weeks of pregnancy. Studies show that levels of psychological distress do not map directly onto length of gestation. Even very early losses may be emotionally difficult when experienced as the loss of a wished-for child. Physically

speaking, the earlier the loss, the easier it is. If a pregnancy has reached ten to twelve weeks gestation, however, spontaneous abortion may resemble labor.’ The cervix dilates, and the uterus contracts to expel its contents (the fetus, amniotic sac, and placenta, along with an excess of blood). Losses that occur after twenty weeks gestation are considered stillbirths and are thankfully much more rare. Nev-

80 Linda Layne ertheless, it is estimated that 26,000 pregnancies in the US end in this way (NIH 2003). The care given to women who undergo miscarriage or stillbirth would be greatly improved by applying the principles of the women’s health movement to pregnancy loss. Since the 1970s, women’s health advocates have worked to empower American women in childbirth.

Significant progress has been made in terms of educating women about their bodies, providing information about what to expect from their caregivers, and teaching women how to effectively advocate for themselves. In addition, there is now a wider range of birth attendants available and more congenial birthing settings. Although the rate of Cesarean section remains alarmingly high (22.9 per 100 US births in 2000, Menacker and Curtin 2001: 1), many other unnecessary medical interventions have been eliminated or reduced. Comparable initiatives have not occurred for women whose pregnancies end without a live birth.

My understanding of the need for such initiatives comes from ethnographic research with members of three American pregnancy loss support organizations (1986-9), a textual analysis of the newsletters of two of those organizations (1982-2003), an examination of representations of loss in popular American culture and medical texts, and from my personal experience of seven miscarriages (1986-

95). In this chapter I adopt an analytical method. Drawing on a number of influential texts in the feminist childbirth movement, I show how four feminist models of childbirth can be profitably adapted

for pregnancy loss in the US and how applying the principles of the women’s health movement would be beneficial in terms of preparing for, managing, and framing pregnancy loss.

Prepared Pregnancy Loss “Prepared childbirth,” as described by Barbara Katz Rothman in her book, In Labor: Women and Power in the Birthplace (1982), applies the feminist principle that “knowledge is power.” In Katz Rothman’s view,

the fact that women now generally know what to expect in childbirth was the only positive change she saw in the “medical management of childbirth ... in American hospitals in the past fifty years” (1982: 79). Katz Rothman uses the term, “prepared childbirth,” critically to highlight how far short of her feminist goals we have come. But in comparison to pregnancy loss, the progress made in terms of preparing women for childbirth is enviable and serves as a model for

Designing a Woman-Centered Health Care Approach 81 interventions that could be made to better prepare women for pregnancy loss. One of the reasons women are as well prepared for birth as they are is the information provided at prenatal visits and the plethora of mass-marketed books on the subject. A survey of a Borders bookstore shows that it carries 195 titles on pregnancy and childbirth, including a number that purport to be “complete guides” as well as others specializing in pregnancy for teens, those over 30 or 35, Jewish pregnancy, multiple pregnancy, vegan pregnancy, pregnancy for fathers-to-be, working mothers, and “dummies.” These books are frequently purchased in the early weeks of pregnancy and sometimes even prior to conception. They explain step-by-step embryonic and fetal development, changes to a pregnant woman’s body, feelings, how to take care of oneself, how to choose a caregiver, and what to expect at prenatal visits. In the later chapters, they also tell

women about labor and delivery, what to expect physically and emotionally during and after birth, and what to do to prepare for birth and the new baby. Another reason that women know what to expect is that they attend childbirth education classes. A six-week course I attended in 1993 included information on the anatomy and physiology of pregnancy, the signs, phases, and physical and emotional changes of labor, what to expect when arriving at the hospital, medications, comfort measures, what to expect during delivery, and Cesarean birth, as well as a discussion of what to expect after delivery in the hospital and at home. It also included a birth film followed by discussion and a mock labor and delivery.’ What would “Prepared Pregnancy Loss” look like? Women would

be given information on pregnancy loss as early as possible, either during a preconception visit or at the first prenatal visit. The American College of Obstetrics and Gynecology’s early pregnancy loss pamphlet, published in 2002, includes some of the needed information (i.e., information on frequency and consequences for future childbearing), but needs to be revised to include guidance on the actual process of miscarriage.’ Detailed, graphic descriptions of the physical process of miscarrying and how this may feel are needed, and there should be information on how to deal with the bleeding, cramping, backache, and/or discharge of amniotic fluid. Questions that should be addressed include where one might best place oneself for a miscarriage (e.g., on the toilet, in bed, on the floor, in a shower);

what one should do for pain (e.g., medications, hot packs, certain postures, baths, massage); whether a woman should plan on hav-

82 Linda Layne ing someone to help, and if so, whom, and how she can arrange for this; and the best way to deal with the blood. The ACOG pamphlet advises placing fetal tissue in a clean container and taking it to the doctor; does it need to be kept at a certain temperature and taken there within a certain time frame? What will women be giving up

if they instead choose to treat the fetal tissue as something other than a medical specimen? What are some alternatives? In addition, lay books on pregnancy should include more information on loss, which should be integrated into the appropriate chronological chapters rather than hidden at the end (Layne 2003a). Books on pregnancy loss should be shelved with other books on pregnancy rather than segregated from them (Layne 2003b; Kluger-Bell 1998). There should be more frequent, honest, detailed, and graphic depictions of pregnancy loss on television shows and in films, art, and fiction.* And rather than having childbirth classes clustered at the end of pregnancy, women should attend pregnancy courses throughout the pregnancy. Since most pregnancy losses are first-trimester miscarriages, information on this type of loss should be offered early. Women and their helpmates should be instructed in the anatomy and physiology of pregnancy loss, including the signs, phases, and physical and emotional changes associated with each type of loss (first- and second-trimester miscarriage, termination of a pregnancy following prenatal diagnosis, molar pregnancy,’ ectopic pregnancy,° loss of part of a multiple gestation, stillbirth). Unlike births, all but one percent of which occur in hospitals, pregnancy losses occur in a wide variety of settings including several locations within hospitals (ERs, operating rooms, labor and delivery rooms), as well as at home, in obstetricians’ offices, and in abortion clinics. Therefore, women need to be instructed in the pros and cons of each of these

venues so that they may choose the location that best suits them and so that they will know what to expect during and alter a loss in that setting. They should be instructed in the various medications available, including medicines for pain and those used to bring on labor, i.e., what they are used for, how they are administered, the pros and cons of using them, and the various surgical interventions they may be offered or face (e.g., Dilation & Curettages [D&C], a surgical evacuation of the uterus, which was the standard of care for miscarriage in the US throughout the twentieth century). Women and their helpmate(s) should be trained in the use of breathing and other relaxation techniques, including massage and other comfort measures. They should be told what things they will need to buy or prepare to

Designing a Woman-Centered Health Care Approach 83 have on hand for the loss. They might see a film of a woman miscarrying and/or giving birth to a stillborn child and maybe even act out a mock pregnancy loss. They could be offered a tour of the facilities where they might have a loss. They should be encouraged to create a pregnancy loss plan and counseled, as women are counseled about their birth plans, that things do not always go according to plan. First-person and fictional accounts of miscarriage indicate that if a woman has started to spot, she will have an urgent need to know whether or not she is losing the baby. It is hard to know if one is miscarrying (or has had a miscarriage) because the most common sign, bleeding, is not definitive. Several tests can determine whether or not a miscarriage has occurred or is inevitable, including sonograms to see if there is still a heartbeat, blood tests for dropping hormone levels, and pelvic exams to see whether or not the cervix has opened and whether any fetal tissue is emerging. (According to the ACOG’s 2002 brochure, “If the cervix has dilated and fetal tissue is lost, a miscarriage is certain.” Women could be taught how to perform pelvic self-exams: these exams are easy to learn and easy to give. During the early years of the women’s health movement, activists taught women to perform their own vaginal exams using a plastic speculum and mirror. Carol Downer, a founder of the Los Angeles Feminist Women’s Center, is credited with this innovation. She recalls after glimpsing a friend’s cervix while accompanying her to a routine gynecological exam, that “It was a shock to see how simple and accessible our anatomy is.” That night, at a meeting of activists, Carol pulled out the plastic speculum she had taken from the doctor’s, saying, “I’d like to share something with you.” She climbed up on a desk and inserted the speculum, allowing the amazed group to see her cervix.’ Self-exams would be simple to teach either at a prenatal visit or during pregnancy classes and could be an empowering tool for women. Further, fetal dopplers are now available for home use. Belly Beats

offers for rental or purchase two versions of their “Fetal DopplerBaby Heart Monitor,” which they advertise as “a sensitive instrument that can detect the baby’s heart rate as early as 8 to 12 weeks into your pregnancy, providing you peace of mind that your baby is safe well before your first doctor’s appointment and throughout your pregnancy” (). These might empower women with knowledge, unmediated by experts, about whether or not their pregnancy is still viable.

84 Linda Layne Natural Pregnancy Loss “Natural childbirth” deals with the realms of managing and framing pregnancy loss, and applies the feminist principle of woman-centered care. Since women are neither simply bodies or feelings, womancentered care entails a holistic approach that attends to both. The term “natural childbirth” came into use when Grantly DickRead, MD, published a book by that name in England in 1933. DickRead’s goal was to eliminate all manner of “interference by obstetricians in the natural and uninterrupted course of labor” (1987: xx). He advocated “birth with dignity,” meaning, among other things, that “the laboring mother ... be the respectful center of everyone’s loving attention” (Katz 1989: 32).° This “respect for the laboring woman” was a radical innovation. Although Dick-Read embraced a “Victorian, traditionalist attitude towards women’s role,” in which he saw the laboring woman as fulfilling her most important function in life, “drawing closer to God as she worked to bring forth her baby,” in terms of a perspective with which to approach a laboring woman, it was superior to the “prevailing American philosophy, which saw the laboring woman as essentially no different from someone in the hospital for gallbladder surgery” (Rothman 1982: 86-7). Dick-Read was also an advocate of “natural surroundings for a natural event.” He called upon hospitals to offer women “a room that

has all the décor and atmosphere of home” and supported the establishment of birthing centers especially designed for this purpose (Dick-Read 1987: 32).

Dick-Read focused on the “socio-emotional context in which birth takes place.” He believed that “[n]o greater curse can fall upon

a young woman whose first labor has commenced than the crime of enforced loneliness” and likened such an experience to his own fear and loneliness during a wartime battle (Katz Rothman 1982: 86). Fear, he maintained, was almost entirely to blame for pain in childbirth, and he titled his second book Childbirth Without Fear (1944),

There are several components of the natural childbirth model that could be profitably adapted for pregnancy loss. The first is the elimination of unnecessary interference in a natural process. Although obstetricians recognize miscarriage as a natural process, one of the primary ways they deal with it is by performing a D&C. This surgical procedure is one commonly used for elective abortions and involves using tools to dilate a woman’s cervix and scrape out the lining of her uterus. Although it is a relatively safe procedure invalu-

Designing a Woman-Centered Health Care Approach 85 able to women seeking elective abortions, in the context of miscarriage, it is almost always unnecessary surgery.’ A second relevant element of the natural childbirth model is “natural surroundings for a natural event.” Although today women who give birth in hospitals often do so in “a room that has all the décor

and atmosphere of home,” this is not the case for a miscarriage. D&Cs for miscarriage are performed in emergency rooms, hospital operating rooms, obstetrician’s offices, and occasionally in abortion clinics, not in homey birthing suites. The unnecessary tissue is summarily removed, and women are sent on their way. If they are not given a D&C but instead are given medication to bring on contractions or encouraged/allowed to miscarry naturally, they do so on their own, “in enforced isolation,” precisely in the type of “socio-emotional context” that Dick-Read recognized as engendering fear and maximizimg pain.

Home Pregnancy Loss The feminist model of “home birth” overlaps with but is not synonymous with “natural childbirth.” Since such a minute proportion of US births take place at home, most of those who aspire to “natural childbirth” give birth in hospitals. Like natural childbirth, the home birth model applies the feminist principles of holistic, womancentered care. It also emphasizes the notion of “empowerment.” Before the twentieth century, nearly all births in America were home births (Barker-Bentield 2000; Wertz and Wertz 1989: 133). By 1960, “outside of some isolated rural areas, it was almost unheard

of for American women to deliver their babies at home” (Leavitt 1986: 171). By the end of the 1960s, the home began to reemerge as the birth place of choice among members of the counter-cultural movement. Ina May Gaskin has been a leader of this movement; 95 percent of the 2,028 pregnancies she and her midwitery partners at the Farm in Tennessee attended between 1970-2000 were completed at home.'® Despite the small number of births taking place in American homes, the model of home birth has been an extremely influential one in the

women’s health movement (Michie and Cahn 1997: 17-22). Our Bodies, Ourselves, often referred to as the bible of the women’s health

movement, has played a major role in putting forward home birth as a model “of truly woman-centered care” (BWHC 1998: 456). The many powertully appealing photographs of beautiful homebirthing

86 Linda Layne women surrounded by a loving circle of supporters (female birth attendants, partners, friends, and children) illustrating the various editions of Our Bodies, Ourselves are iconic of “a good birth.” In addition to the greater ability to avoid unwanted medical in-

terventions, proponents of home birthing stress the advantages of “the security and comfort of a familiar environment and enjoying a sense of loving community” (Kitzinger 2002: 10-11). The home is championed as a place where women can exercise agency. Sheila Kitzinger (11) counsels women to “plan ahead to have the kind of birth you want in an environment that you control yourself.... This is empowering.” The qualities that make the home appealing for birth are also highly desirable when it comes to pregnancy loss. Indeed, the home has the potential for becoming the ideal location for miscarriage and stillbirth. The Need for Improvement in Home Miscarriage

Home miscarriages are becoming increasingly frequent with efforts to manage healthcare costs and other changes in the medical management of miscarriage (Layne 2006). While home birth provides an excellent model for woman-centered care during a miscarriage, at present, home miscarriages are practically the antithesis of home birth—they lack the benefits of home birth and are in many ways more traumatic than a conventional medically managed loss. The reason for this discrepancy is that home losses differ from home birth in two important respects. Whereas most women who birth at home are particularly well informed and well prepared for birth (Boston Women’s Health Collective 1998: 457), first-person accounts indicate that middle-class American women feel supremely unprepared for pregnancy loss. Another important difference is that homebirthers are attended by trained, experienced caregivers, while home miscarriages typically take place without such assistance. Furthermore, whereas “at home, birth is a family event with the father, grandparents, older children and friends all welcome to share the wonder of birth and greet the new baby” (Boston Women’s Health Collective 1984: 340), miscarriage and stillbirth tend to be very lonely, alienating experiences. Women who miscarry “naturally” do so either alone, or with an equally unprepared partner. The consequences of this lack of care are evident in first-person accounts of loss. For example, one woman recalls, “My husband held me and we cried together. The deepest and most obvious feeling was the sense of loss. Almost as strong was the fear. We did not understand what was happening and why it was happening to us. We were also fright-

Designing a Woman-Centered Health Care Approach 87 ened by the look of what was pouring out of me. It was bad enough that we were losing our baby, but in the midst of all that pain we had to stay strong enough to deal with all that blood. Why hadn’t anyone given us any preparation?” (Boston Women’s Health Collective 2005: 497). Fear, embarrassment, pain, the need for reassurance and information, and the psychological trauma of dealing with the embryo are all evident in Heather Swain’s (2003) nonfiction account of a first-trimester miscarriage, “My Flesh and Blood.”'' Pregnant with her first child, Heather learned at an eight-week sonogram that the embryo was smaller than it should have been. Two weeks later, [O]n the morning of the second sonogram, I woke early ... I stumbled sleepily to the bathroom, for a moment forgetting that I was worried until I saw a bright red stain of blood in my underwear and whimpered. I called my OB/GYN, who said there was nothing she could do. That I was likely miscarrying and had to let my body take care of itself. She named my disorder “blighted ovum”....“Miscarriage happens to a lot of women,” she said. “It’s perfectly normal.” I wanted to ask her for a certificate to prove I was perfectly normal because at that moment I felt like such a failure. That day, I read everything about miscarriage in my pregnancy books.... I napped often. Cried sometimes. Watched as much confessional TV as I could stomach. Occasionally the cramps took my breath away. In the evening, I told my husband that I wanted to get out of the house. Go out to dinner and take a walk. Get my mind off of what was happening in my body because now I knew what to expect. I had done my research. I had read in books that a miscarriage was nothing more than a severe period. I could handle that. But nothing could have prepared me for that fullmoon night when gravity loosened the grip of the fetus dying in my body. And it plummeted in a sickening slide from between my legs to land in a quivering mess in my underwear. I was on the street corner

across from my house with my husband when this happened. I squeezed his fingers until they were red then white and walked like an elderly woman with slow unsure steps.... In my bathroom, I lowered my jeans with my eyes half-closed because I didn’t want to see what had come loose from my body. I sat on the toilet and carefully pulled out the sanitary napkin.... All kinds of extraneous material held everything in place and gave my daughter what she needed inside of me. And all of it had fallen out.... I keened, a sound so desperate and sad that it even surprised me. I wanted to create some sort of shroud from gauzy fabric and carve a box from fragrant wood in order to bury what I'd lost. But when my husband knocked on the door and pleaded to know if I was OK, I panicked and quickly wrapped

up the remains in wads of toilet paper to spare him the sight of my

88 Linda Layne failure. My husband entered and gently took the bundle from me. In his confusion he placed it in an oversized trash bag as he gathered everything else from the floor around me (ruined underwear, tissues, unused pads) as if all of it had been contaminated.... I didn’t mean to dispose of her so easily, but I couldn’t find the words to tell him to stop. That was our daughter. For the next 10 days I cried and slept and bled. I could not believe how much blood my body could lose without killing me. Ropy red nodules fell out of me. That got old quickly. I wondered

what would fall out next. A shoe? An old tire? Jimmy Hofta? Nothing would have surprised me. I washed and washed the blood away.

Sandy McLean had similar feelings of embarrassment during an un-

anticipated home miscarriage, which she describes on an episode of the television series Motherhood Lost: Conversations, “Preparing for Home

Pregnancy Loss: A Conversation with Sandy Maclean of WomenCare” (Layne 2006a). When Sandy started spotting at thirteen weeks, her healthcare providers determined that the fetus had died at about nine weeks gestation. Sandy opted for a D&C, which was scheduled for the following morning but “woke up in the morning at about 1:30, soaked in blood, and I didn’t realize that my miscarriage had already begun. I was never told that that was a possibility. I basically rushed to the bathroom, and by the time I got there everything was spilling out of my body onto my bathroom floor and my first thought was to get this whole thing cleaned up before my husband saw it, because I was embarrassed, somehow, of what my body was able to produce, and I didn’t want him to see this.” She cleaned it up and went back to bed, “assum[ing] my miscarriage was over but unfortunately the miscarriage continued till about 5:30 in the morning with a lot of cramping and a lot of pain.” She called her doctor, who canceled the D&C. “I experienced some

light cramping that morning, but it turned into very heavy contractions throughout the day, and I was given no pain medication.... I finally fell asleep at about 11 pm that night, just physically exhausted. I really felt like it was over. My contractions had stopped. I got up the

next morning ... and was standing in my bathroom and I lost my fetus. That was a really devastating experience. I felt helpless. I didn’t

know what to do. I didn’t know where to turn. I didn’t know it I was just to toss it away in the garbage with the banana peels or if I was to put in the refrigerator and save it....” Another case that vividly illustrates the need for caregiving during home miscarriages can be found on the episode of Motherhood Lost: Conversations, “Reducing the Trauma of Loss through Better Preparation and Care: A Conversation with Denise Cote-Arsenault, PhD, RN,

Designing a Woman-Centered Health Care Approach 89 and Pam Scarce, RN.” Denise describes her experience of losing a pregnancy at home alone. Her doctor had found no heartbeat at the twenty-week checkup, and a few days later, while at home alone with

her two young children, she started having contractions. She went to the toilet, and her membranes ruptured, and her “baby fell out and he was hanging there by the umbilical cord.” As her children were

pounding on the bathroom door and calling to her (since they were not accustomed to having her close the door) she took the umbilical cord in her hands and ripped it apart, letting the baby drop in the toilet. She called a friend who lived nearby, and while her friend was in the downstairs bathroom trying to fish the baby out, Denise delivered the placenta in the upstairs toilet and flushed it. In retrospect she observes, “I certainly didn’t have my nurse’s hat on then,” recalling that she very soon after regretted not having saved it (Layne 2006b). Home Stillbirth

At present, most stillbirths take place in hospitals, since that is where most births take place. But many, perhaps the majority of stillbirths, are discovered before delivery, when a woman realizes she has not felt movement for some time or during a routine prenatal check. In

these cases, women should be offered the option of home birth. It is probable that women select hospital birth because of their beliefs about the hospital providing the baby with greater safety (DavisFloyd 1992: 177-84). In fact, there is evidence that planned, midwife-

attended home births have lower rates of perinatal mortality than hospital births (178-9). Nevertheless, most American women feel safer giving birth in a hospital “just in case something should go wrong” (177). Once a fetal demise has occurred, such concerns become moot. Thus, a home stillbirth offers many advantages. Consider the stillbirth that midwife Penny Armstrong describes in her memoir (1986: 209-25). Penny had been assisting Amish women with

home births since 1979 and delivered approximately one thousand babies before assisting at her first stillbirth. She had caught Leah and Johnny’s first baby for them and was attending Leah during her second pregnancy when she got a call from Johnny at 4:00 am. Premature labor had begun, and Leah explained that she had not felt the baby moving since the day before. The electronic stethoscope picked up the sound of placental blood flowing but no heartbeat. Penny cried when she told them, “Your baby isn’t living, but it’s about

to be born.” Leah was dilated to nine centimeters and contractions were rapid. Penny asked them whether they wanted to have the baby

90 Linda Layne there or for her to call an ambulance. In answer to Johnny’s question

about safety, Penny explained that there was no reason that they should not stay at home. Johnny brought her bag from the car and they settled Leah on the blue delivery sheets. Then “Leah flushed, perspiration gathered on her upper lip and brow; she was lost to her contractions.... I slipped with relief into the coaching ritual.... Then in one sleek move, the silver baby whooshed out.... I caught her.... She was smooth-skinned as if very finely made. I was riveted by the look of peace on her face.... “It’s a baby girl,” I said, “and the cord is wrapped around her neck.” I couldn’t tell whether it was a sob or a moan from a contraction that broke out of Leah ... [as] the afterbirth came.... I wrapped the baby in old soft flannel and carried her to her parents. They began to stroke her ever so gently and to praise her, “She looks just like her brother, Eli, when he was born.... Look at her sweet eyes and tiny ears...” talking to her through their tears. Penny packed up her things and then went back into the bedroom before leaving. Johnny was sitting silently on the edge of the bed with the baby nestled on his knees. He was rocking slowly back and forth. Leah was propped up against him. Johnny chanted, “Oh, sweet little baby, oh.” I went over and kneeled by Johnny’s knee and he put his arm around me, and for the longest time he rocked me too. Penny drove to Leah’s parents’ farm and told them of the loss of their grandchild,

then took the death certificate to the funeral home and conveyed some of Johnny and Leah’s questions and wishes to the director. She returned to be with Johnny and Leah in the afternoon and attended the funeral the next day (Armstrong and Feldman 1986: 209-25).

This case illustrates a number of benefits of midwife-assisted delivery at home for still as well as live births—the continuity of care throughout the labor, delivery, and aftermath by a trusted, experienced caregiver who knew and was known to the family in one’s own home with all of the attendant material and psychological comforts such a setting offers. In addition, Armstrong helped after the birth with the physical, emotional, legal, and social needs of the couple. The Benefits of a Homebirth Attendant for Miscarriage and Stillbirth

The benefits of a trained birth attendant (whether a midwife or doula) for home miscarriages or stillbirths are clear. If the comfort of familiar surroundings is desirable during birth, it would be much more so when one is facing a loss. If women benefit from the sustained, loving presence of a single caregiver (instead of the vicissitudes of nurses changing shifts, medical students trooping through on rounds, doc-

tors who may or may not show up or who may not be on call that night and are being covered by a partner), women facing the chal-

Designing a Woman-Centered Health Care Approach 9] lenges of labor without the “prize” at the end would benefit even more. Furthermore, there is anecdotal evidence that birthing a dead baby may be more difficult than a live birth. Women who have experienced both live and stillbirths report that it is more difficult physically, let alone psychologically, to birth a dead baby. For exam-

ple, one of Ina May Gaskin’s clients had three children easily, but her fourth died in utero seven weeks before her due date. She carried the baby for five more weeks before being induced. She observed, “It was quite different getting out a dead baby because there wasn't any energy from the baby. I’d never realized before how much

the baby puts out to get born, but now it was noticeably lacking” (Gaskin 2002: 463).

After moving to the Farm and having a baby, another woman in Gaskin’s care recalls a miscarriage she had had when she was threeand-a-half months pregnant. “Now that I’ve had a baby, I know that miscarriage is just like having a baby in some ways. I had rushes five

minutes apart, for hours, that got stronger and harder to integrate. But the big difference between this and a birthing was I didn’t want it to happen. I knew that sometimes a miscarriage is Nature’s way of rejecting a baby that wasn’t forming right or something and I should have faith in the Universe that the best thing would happen. Nevertheless, I didn’t want to miscarry.... And I was fighting it....” (100). We know about the mind/body connection in labor—that the way a woman is feeling during labor affects the progress of labor and her experience of pain. Fears abound during a pregnancy loss. What will it be like? How long will it last? How will I know whether the blood loss is normal or if I’m hemorrhaging? If a woman learns of a demise further along, she might worry, “What will my baby look like? Will s/he be deformed?” Although there are elements of distress over the loss of a wishedfor baby that no one can relieve, the presence of a trained birth attendant—one who knows what to expect, is familiar with what is taking place in a woman’s body, with what comes out, who can tell her what it will look like and talk her through it, as well as offer the comfort of touch, reassurance, and comfort—would greatly reduce the fear currently accompanying home miscarriage. O’Mara (2002) explains why doulas (and the same could be said

of midwives) may be more effective at this than partners, since “partners may need their own support. No matter how much a partner loves you, s/he may end up feeling overwhelmed, squeamish, or exhausted by the experience. The very fact that this person loves you so much might make it impossible for him to relax and think

92 Linda Layne objectively about what the current situation calls for. Additionally your partner or friend will most likely not have anywhere near the experience and knowledge that a competent doula will.” Framing

Another aspect of home birth—at least as practiced at the Farm— that would be beneficial for pregnancy loss is the attitude toward labor. The spiritual orientation of birthing women and the midwives caring for them at the Farm provides a helpful alternative mind set. This orientation sees life and death as both part of the universe and embraces a “be here now” attitude. In this approach, the labor is something beautiful in and of itself and to be experienced for itself regardless of the outcome. The first-person accounts in Gaskin’s book make it clear that such an attitude might make the experience easier. Would it be possible to transform the cultural norm of feeling like

a failure as a woman if one’s baby is born dead, to acknowledging the strength, both physical and inner, to labor and deliver a child who has died? Bearing a baby who dies before or during birth is also a unique womanly capacity; it calls upon us to reach deep into ourselves and draw on strength that we may not know that we possessed. One of the women who gave birth to her third child at the Farm after negative birth experiences with her first two tells of “the most amazing change since the birth. After my first two births ... I felt de-

feated, dejected, and discouraged,” but after giving birth at the Farm, she reports, “I have noticed ... how much stronger I feel as a person.... A friend told me once that after the birth of her son, she felt as if she could have climbed a mountain. I thought she meant how she felt physically, but now I realize that she meant much more than that. She was empowered” (Gaskin 2003: 56). She remembers watching the Winter Olympics shortly after her son’s birth and saying of their feats, “That’s nothing. I could do that. Try pushing out a

ten-pound, ten-ounce baby, and then we'll talk!” (56). If woman who delivers a live child can feel proud of her strength, shouldn’t a

woman who delivers with the additional physical and emotional challenges of bearing a baby who has died feel equally empowered by her newfound strength?

Are there ways one could adopt the attitudes of these homebirthers and their supporters, even if one knows this labor will not result in a baby to bring home? Mary, another woman at the Farm, was able to enjoy aspects of such a supremely difficult delivery. She recalls being relieved when she got “to where I could push. At that point I could feel my body take over and now I could help out. I en-

Designing a Woman-Centered Health Care Approach 93 joyed pushing and putting out big surges of energy. This was more like it.” She recalls how her husband and midwife “encouraged me a lot and told me how beautiful I looked and how good it sounded” (Gaskin 2002: 462). After the baby was born, she remembers feeling “the same exhilarating rush and wave of gratitude that I’d felt just after delivering my live babies. I was really sorry I'd lost this one, but I was glad to bring the karma to rest” (463).

Social Pregnancy Loss “Social childbirth” applies the feminist principles of sisterhood and solidarity and comes from Wertz and Wertz’s Lying-In: A History of Childbirth in America (1989). They use the term social childbirth to describe births in colonial New England, when births occurred at home, and “female friends and relatives came to the expectant woman to provide comfort and practical aid” (2). These “rituals of birth” were “a primary occasion on which women expressed their love and care for one another and their mutual experience of life” (2). Women helped in practical ways, “[and they also] ... heartened the expectant woman, share[d] their own knowledge and experiences of birth, and prepare[d] themselves for their own future deliveries” (4-5). Wertz and Wertz conclude that “[the] laboring woman must have gained confidence from being surrounded by women who had themselves suffered and survived,” and they surmise that this relaxing effect would have helped ease the pain. Women continued to help after the birth by taking over the household chores during the lying-in period. This model provides several elements sorely lacking from pregnancy loss today. If we adapted this model of social birth to pregnancy loss, female friends and relatives would provide the woman with comfort and practical aid. Pregnancy loss would be an occasion on which women would express their love and care for one another

and their mutual experience of life. They would also hearten the woman by their care and by sharing their own knowledge and experiences of loss. Women undergoing a miscarriage or stillbirth would

gain confidence from being surrounded by women who had themselves suffered and survived. Being in such a supportive environment might ease the physical and emotional pain. At the same time, women attending such female rites would be preparing themselves for the possibility of loss in their own pregnancies. Such aid would continue after the miscarriage or stillbirth, as relatives and friends

94 Linda Layne would help with the household chores and continue to offer emotional support to the bereaved mother. Another valuable element of the social birth model is ritual closure. According to Wertz and Wertz, in colonial New England, the end of the lying-in period culminated in a “groaning party” for all the woman’s helpers (5). The term, they suggest, refers to the groans of labor, the groaning of the table under the weight of food, and the groans of the women after overeating. The wife of Judge Sewall of

Boston gave such a party to thank her seventeen helpers. In some regards this ritual resembles the pregnancy loss ritual I witnessed in Jordan, which I describe in Motherhood Lost (2003). Both involve the offering of a ritual meal at the end of the liminal period of seclusion following a reproductive event. The meal offered by the woman to

the women of her social network creates some closure on this period of her life, marks her transition back into the flow of everyday life, and celebrates female solidarity.

Conclusion Women who labor deserve to be treated with dignity regardless of whether their labor will result in a live birth. In order to accomplish this, we need to understand the special physical and emotional needs of women undergoing miscarriage or stillbirth. The four feminist models of childbirth discussed in this chapter provide a useful starting point for designing new models for woman-centered pregnancy loss. Adapting the model of “prepared childbirth” and applying the feminist principle that “knowledge is power” to pregnancy loss points

to the many ways of ensuring that women are better prepared for these all-too-common reproductive disruptions. The models of natural, home, and social childbirth can be adapted to improve the care extended to American women during and after miscarriage or still-

birth. These models emphasize the importance of “empowering” women and taking a holistic approach that addresses women’s physical, social, emotional, and spiritual needs. The social model of child-

birth emphasizes the feminist principles of social solidarity and sisterhood. Together these models lead to a reframing of pregnancy loss. Instead of seeing miscarriage and stillbirth as aberrations for

which women should feel ashamed, these reproductive events should be embraced as important, unique women’s experiences with inherent value and that merit our support.

Designing a Woman-Centered Health Care Approach 95

Notes 1. After losing her own pregnancy at about three months, midwife Penny Armstrong observed, “I used to say to my patients that miscarriage— that far along—was often said to be more painful than normal labor. I say it with greater conviction now” (Armstrong 1986: 145). 2. In addition to such educational films, birth scenes have become a staple of television dramas in recent years. 3. Iam working with Denise Cote-Arsenault RN, PhD on creating a fact sheet for this purpose. 4 Fora marvelous example in fiction, see Swain 2004; for a discussion of the need to normalize loss through popular culture, see Layne 2005. 5. Molar pregnancies happen in the initial cell division, when the cells that are supposed to develop into the placenta instead develop into a

tumor. Molar pregnancies are rare in the US (one in one-thousand five-hundred live births), but rates increase with age and are much more common among Asian women (BWHC 2005). 6. Ectopic pregnancy is a form of pregnancy loss in which the fertilized egg starts developing outside the uterus, usually in the fallopian tube. Ectopic pregnancies can be life-threatening conditions that require immediate treatment. They can happen to anyone, but the risk is higher for women who have had previous tubal surgery, including surgery for a previous ectopic pregnancy and tubal reversal surgery, women who have pelvic inflammatory disease (PID) or who used Intrauterine De-

vices (IUDs), women whose mothers were given Diethylstilbestrol (DES), and African American women. Approximately one in every fifty pregnancies is ectopic (BWHC 2005).

7. 8. But as Katz Rothman notes, in the American context, “Natural childbirth is a slippery concept,” which is most often used to refer to births that occur without the use of pain medication or surgical interventions (like episiotomies). 9. Inasmall number of cases, women do not spontaneously expel all “the products of conception,” and a D&C would be necessary in order to prevent infection. 10. Gaskin began assisting at births in 1971 while caravanning with three hundred others in remodeled school buses from San Francisco to Tennessee, where they purchased land and established “The Farm.” On that trip, eleven babies were born, including Ina May’s first, a son who was born two months early and lived for twelve hours, “enough to see

the light of day, and then he died in my arms, probably of hyaline membrane disease” (Gaskin 2002: 19). 11. See also my own description of two home miscarriages (Layne 2005).

96 Linda Layne References American College of Obstetrics and Gynecology. 2002. “Early Pregnancy Loss: Miscarriage and Molar Pregnancy.” Armstrong, Penny and Sheryl Feldman. 1986. A Midwife’s Story. New York: Ivy Books. Barker-Benfield, G. J. 2000. The Horrors of the Half-Known Life: Male Attitudes toward Women and Sexuality in Nineteenth-Century America. New York: Routledge. Boston Women’s Health Book Collective. 1976. Our Bodies, Ourselves: A Book by and for Women. New York: Simon and Schuster. . 1984. The New Our Bodies, Ourselves: A Book by and for Women. Boston: BWHC. . 1998. Our Bodies, Ourselves for the New Century: A Book by and for Women.

New York: Simon and Schuster. . 2005. Our Bodies, Ourselves: A Book by and for Women. New York: Si-

mon and Schuster. Davis-Floyd, Robbie E. 1992. Birth as an American Rite of Passage. Berkeley: University of California Press. Dick-Read, Grantly. 1987. Childbirth Without Fear: The Original Approach to Natural Childbirth. Revised and Edited by Helen Wessel and Harlan F. EIlis. New York: Harper and Row. Feminist Women’s Health Center. 2004. “Self Help: A Revolution in Women’s Health.” , 277 December. Gaskin, Ina May. 2002. Spiritual Midwifery. Summertown, TN: Book Publishing Co. . 2003. Ina May’s Guide to Childbirth. New York: Bantam. Katz Rothman, Barbara. 1982. In Labor: Women and Power in the Birthplace. New York: WW Norton. Katz Rothman, Barbara. 1989. “Women as Fathers: Motherhood and Child Care under a Modified Patriarchy.” Gender and Society 3, No. 1: 89-104. Kitzinger, Sheila. 2002. Birth Your Way. New York: New York: DK Punlishing Publishing, Inc. Kluger-Bell, Kim. 1998. Unspeakable Losses: Understanding the Experience of Pregnancy Loss, Miscarriage, and Abortion. New York: WW Norton. Layne, Linda L. 2003a. Motherhood Lost: A Feminist Account of Pregnancy Loss in America. New York: Routledge. . 2003b. “Look What’s Missing from Miscarriage: The Erasure of Preg-

nancy Loss in Popular Pregnancy Manuals.” Paper presented at American Anthropological Association annual meeting. .2005.“Popular Culture and Normalizing of Pregnancy Loss Through Popular Culture.” Motherhood Lost: Conversations. Co-produced by Linda Layne and Heather Bailey. Fairfax, VA: George Mason University Television.

Designing a Woman-Centered Health Care Approach 97 . 2006a. “Preparing for Home Pregnancy Loss: A Conversation with Sandy Maclean of WomenCare.” Motherhood Lost: Conversations. Co-produced by Linda Layne and Heather Bailey. Fairfax, VA: George Mason University Television. . 2006b. “Reducing the Trauma of Loss through Improved Preparation and Care: A Conversation with Denise Cote-Arsenault, PhD, RN, and Pam Scarce, RN.” Motherhood Lost: Conversations. Co-produced by Linda Layne and Heather Bailey. Fairfax, VA: George Mason University Television.

. 2006. A Women’s Health Model for Pregnancy Loss: A Call for a New Standard of Care. Feminist Studies. Leavitt, Judith Walzer. 1986. Brought to Bed: Child-bearing in America, 17501950. New York: Oxford University Press.

Menacker, Fay and Sally C. Curtin. 2001. “Trends in Cesarean Birth and Vaginal Birth after Previous Cesarean, 1991-99.” National Vital Statistics Re-

ports 49(13), 27 December. Washington, DC: Department of Health and Human Services. Michie, Helena, and Naomi Cahn. 1997. Confinements: Fertility and Infertility in Contemporary Culture. New Brunswick, NJ: Rutgers University Press. National Institutes of Health. 2003. “NICHD Funds Major Effort to Determine Extent and Causes of Stillbirth.” , 19 November. O’Mara, Peggy. 2002. Having a Baby, Naturally: The Mothering Magazine Guide to Pregnancy and Childbirth. New York: Atria. Swain, Heather. 2003. “My Flesh and Blood” Salon.com. . 2004. Luscious Lemon. New York: Down Town Press. Wertz, Richard W. and Dorothy C. Wertz. 1989. Lying-In: A History of Childbirth in America (expanded edition). New Haven: Yale University Press. Ventura, Stephanie J., William D. Mosher, Sally C. Curtin, Joyce C. Abma. 2001. “Trends in Pregnancy Rates for the United States 1976-97: An Update.” National Vital Statistics Reports 49(4), 6 June. Washington, DC: De-

partment of Health and Human Services.

Chapter 3

ENLARGING REPRODUCTION, SCREENING DISABILITY Rayna Rapp and Faye Ginsburg

Introduction D isrupted reproduction’technologies now means (ARTs). far moreInthan use of sisted reproductive the the present eraasin the US and other developed nations, the dramatic growth in the use of ARTs should be viewed in light of a much larger and more steadily increasing use of technologies of “neonatal salvage” (as well as less heroic medical interventions) that have enabled a much wider range of medically challenged infants to survive. Thus, the “disruption of reproduction”—as other chapters in this collection also make clear— has much broader temporal and sociocultural consequences than the language of reproduction might suggest. Our goal in this chapter is to look at the social processes by which this expansion occurs. We do so through a general discussion of the increasing visibility and acceptance of disability in both public media and the more intimate domain of kinship. We see this work as an expansion of our prior development of the concept of “stratified reproduction,” a term we use to describe “the power relations by which some categories of people are empowered to nurture and reproduce while others are disempowered” (Ginsburg and Rapp 1995; cf. Colen 1995: 115) With more and more premature and medically compromised infants surviving, the consequences of “disrupted reproduction” are

Enlarging Reproduction, Screening Disability 99 thus felt most intimately and significantly in the lives of their families, often far beyond the temporal limits of neonatal intensive care units (NICUs), at least in Western countries where these technologies have become routinized. In an era when American families are no longer encouraged to institutionalize their non-normative babies (or other family members at later life stages), it is no longer simply reproduction, birth, and early infancy that are disrupted. As babies with disabilities grow, many assumptions about kinship relations, domestic cycles, and community membership are challenged as well. The arrival of disabled infants (and others) into families, in most cases, rearranges presumed narratives of “normal” family life, as parents, siblings, extended family, and a broader community learn to reframe expectations of everything from developmental milestones, to the introduction of sign language and ramps in places of worship, to the discovery of what constitutes a “least restrictive” educational environment. “Learning the ropes” of living with disability is often fraught with resistance and prejudice. Battles inside and between families, communities, and institutions frequently entail costly interventions in situations of scarce resources (Landsman 2000). To restate the case, understanding “disrupted reproduction” requires a wider gaze, one that goes beyond the immediate event of reproduction to take account of the vagaries of domestic cycles and the broader structures that shape the lives of “handicapped families” (Oe 1995), which range across many domains. These include:

e changes in the laws that recognize (or challenge) civil rights for the disabled; ¢ mandated inclusion of disabled children in public schools and the ways in which this is (or is not) carried out;

e the increasing presence of disability and its treatment or cure in science and medicine, undergirded by the support of politicians and celebrity activists around issues such as stem cell research— these are often driven by a discourse of salvation; e the expansion of medical and paramedical services—ifrom NICUs to occupational and physical therapy to home health aides—that support the care and integration of people with a wide range of disabilities;

e the increasing, although still limited, presence of non-normative bodies and minds in public media of all kinds, including popular books, magazines, commercials, sitcoms, independent, and even Hollywood films, and sports coverage of events such as the Special Olympics.

100 Rayna Rapp and Faye Ginsburg Without question, there have been groundbreaking achievements. Over the last twenty-five years, disability rights activists have helped to catalyze policy initiatives that offer a potentially radical challenge to the boundaries of citizenship and the relations of obligation between (temporarily) able-bodied and dependent people across the life cycle. The IDEA, or Individuals with Disabilities Education Act (1975), followed by the ADA, or Americans with Disabilities Act

(1990), are the two key pieces of postwar federal legislation that have established the framework for the civil rights for Americans with disabilities, although they are currently endangered in both the Congress and the courts under the Bush regime’s initiative to privatize a broad range of public services. Still, these accomplishments

have dramatically transformed both the institutional and intimate frameworks within which American families operate. Subsequent (if often contested) legal decisions have elaborated on these gains in the fields of education, medicine, and the built environment. Along with many disability scholars and activists (Albrecht, Seelman et al. 2001; Barnes 1999; Corker and Shakespeare 2002; Davis 1997; Linton 1998; Priestley 2003), we contend that these legal victories are necessary but not sufficient to alter the cultural landscape that extends into the realms of “public intimacy” (Berlant 2000). Beyond the securing of formal rights, there lie the hearts and minds of a broad range of people—from family members to neighbors to teachers and others—who not only vote, but also shape the environment in which children with disabilities come of age. Formal accommodations

in schools, for example, are not automatic. First, children must be given an appropriate diagnostic category that allows services to be legally mandated. Making sure they are actually made available can require enormous labor for advocates. This is work that most often falls on families and other daily intimates of youngsters with disabilities.

In this chapter, we argue that transformations in these different domains of public life are crucial, but cannot be understood apart from the intimate arena of kinship and community. These are the locations where changing understandings and practices of reproduction and disability are often first played out. While each constellation of kin and community follows its own idiosyncratic learning curve, inevitably they discover that they are part of “an unexpected minority” (Gliedman and Roth 1980), one of the many social networks of people with disabilities that take shape both formally and informally. In other words, while the term kinship is conventionally associated with the private or domestic sphere, we highlight the considerable cultural work performed in public (Franklin and MacKin-

Enlarging Reproduction, Screening Disability 101 non 2001). This includes not only demands for political equity but also the circulation of kinship narratives inclusive of disabled family members through a variety of media, as we discuss below. Such stories that reframe normalcy are an essential element in the refiguring of the body politic as envisioned by advocates of both disability and reproductive rights. Indeed, many become involved in creating more visible and enduring structures, from support groups to websites to legislation (Oe 1995; Rapp and Ginsburg 2001). Here, we focus on the impact of disability across the life cycle and

in families, with particular attention to the shifting boundary between visibility and invisibility in public consciousness. Thus, we are especially interested in the increasing presence of disability as “a part of life” in a broad range of popular media—books, films, television shows, websites, magazine articles, theater, and public space. We have grown accustomed, for example, to the ubiquitous signs of wheelchair accommodation and the increasing number of elevators equipped with auditory floor signals. However, disabilities that are not readily visible have not made a claim on public awareness as more obvious impairments have. It is still difficult, for example, to imagine signage accommodating dyslexic readers, as is clear to any parent of a learning-disabled child who has had to maneuver a New York City subway. Clearly, there is a moving edge of recognition, as well as a hierarchy of which disabilities “matter in public,” an issue made more complex by the stratification of corporeal distinctions, from the routinized visibility of people using wheelchairs and ramps to the imperceptible but growing presence of the learning disabled. While the increasing range of publicly accessible representations of disability gives us reason for cautious optimism, as we discuss below, other trajectories in contemporary life that valorize normalcy and its variants often work at cross-purposes, as we have argued elsewhere regarding the imperatives of genetic testing (Ginsburg and Rapp 1999; Rapp and Ginsburg 2001). These are so deeply embedded in our daily “mediascapes” (Appadurai 1996) that their epistemological collisions easily go unnoticed even to the tutored mind. Yet the two go hand in hand as the perfectibility of ARTs meets the democratic assertions of disability rights.

The Changing State of Contemporary Reproduction Our consciousness of “reproductive disruption” has changed radically and recently for reasons well known to researchers in the field, who

102 Rayna Rapp and Faye Ginsburg are well aware of the political and historical specificity of the present moment. The medicalization of reproduction—from preconception

to neonatal care and rehabilitation of highly vulnerable newborns, infants, and children—continues apace in those countries and class strata with entrée to the latest technologies. And it reveals problems and possibilities that are themselves often disruptive: women with medical access find their prenatal landscape littered with preconceptual nutritional and lifestyle counseling, level-two sonograms, prenatal diagnosis, prenatal genetic diagnosis, and more. Percutaneous umbilical blood sampling, chorionic villus sampling, and quadruplescreen blood tests may produce or confirm prenatal diagnoses, along with amniocentesis. Should the prenatal news be bad, some may chose to experiment with fetal surgery (Casper 1998), although abortion remains the “choice” of those receiving disturbing news of lifethreatening or life-altering fetal disabilities (Rapp 1999). At the same

time, over twenty thousand pregnant women each year give birth in New York City’s emergency rooms, having received no prenatal medical care whatsoever. Proportionally speaking (and despite how unnerving we find the New York statistics), the news is much worse from other parts of our country, where the “medical insurance crisis,” always high on the list of voter concerns, is routinely manipulated and politicized. This is a quintessentially American situation in which reproductive “decision-making” is usually experienced as an individual “choice” of vast and anxiety-laden possibilities. Yet as these techno-demographics indicate, it is also always highly stratified in our national and rapidly changing social context. These choices frame

the dilemmas facing the current generation of American women (and their supporters) of childbearing age, choices that were unimaginable not even two decades ago. Some aspects of these new technological interventions are widely shared. Approximately 10 percent of fetal deaths, for example, are now diagnosed on early sonogram, which is increasingly available to most women, rich and poor alike, receiving prenatal care (Rapp 1999). Others are class-specific: multiple high-order births routinely result from the expanded use of in vitro fertilization (IVF), which is uncovered by most insurance policies and is, in any case, the prerogative of the well-to-do (Bakalar 2005; Lee 2005). On the whole, they affect older parents, and successful IVF produces a disproportionate number of low birth weight (LBW) newborns. Yet the babies of the poor, especially the African American poor, are also at elevated risk of LBW and extended stays in NICUs here in the United States, a problem upon which we elaborate below. A generation ago,

Enlarging Reproduction, Screening Disability 103 we would have indeed assumed that the scourge of LBW was mainly associated with poverty, but now it is also associated with advanced maternal age and fertility-assisted reproductive techniques. Such obvious commonalities and differences place both the multiple births of costly assisted fertility techniques and the babies of the poor “at risk” to become diminutive patients in NICUs. Continuing the story, the successful treatment and salvage of LBW, premature babies contributes to the increased incidence of children with learning disabilities who are exquisitely stratified in their access to educational and other social resources (Bakalar 2005; Grady 2005; Lewin 2000). They, in turn, commonly live with diagnoses of “comorbidity,” which fuel and are fueled by the revolution in pharmaceuticals, where drugs for ADHD and other neurological disorders are among the most-dispensed and best-studied prescriptions of the last two decades (Conrad and Potter 2000). And, further along, formerly LBW babies frequently grow into children requiring occupational therapy, physical therapy, speech-audiology therapy, reading services, and special-education accommodations. It is no exaggeration to say that both highly privileged and underprivileged consumers of new reproductive technologies—including sonograms, NICUs, and the routine long-term use of medications—live on a rapidly expanding biomedical, biotechnical, and pharmaceutical horizon, whose full impact is yet to be assessed. Without question, whatever its outcome, the uptake of these technologies is highly stratified.

The expanding terrain of techno-reproduction where decisionmaking and experiences of childbearing intersect our social fund of knowledge concerning childhood disabilities requires a broadened framework.’ Beyond the womb, families face the nursery, the kinder-

garten, and primary, middle, and high schools, where the tensions between the experience of living with difference and the normativity of educational institutions play out in daily life. Yet we know little about the stratification that influences how families, networks of care, professional child-service providers, and communities of accept-

ance and rejection integrate decisions and differences surrounding childhood disability. Nor do we know very much about what constitutes a visible, invisible, or partially visible disability in different communities and families. Down Syndrome (DS), for example, is widely, if not universally, recognized, stigmatized, and differentially accepted;

at the risk of building on old stereotypes, poor women use abortion services after a prenatal diagnosis of this condition, just as richer women do, but they appear to end pregnancies at lower rates (Rapp 1999). The phenotypic familiarity of DS is clearly part of the recogni-

104 Rayna Rapp and Faye Ginsburg tion, stigma, and high abortion rate (Rapp 1999). By contrast, learning disabilities are relatively invisible and are not prenatally diagnosable directly, although they often accompany the diagnosis of LBW.

We know correspondingly litthe about how parents, siblings, and children and young adults with learning disabilities relate to this increasingly common label (Rodis, Garrod et al. 2001; cf. Varenne and McDermott 1998) or what its class-differentiated (or age-, gender-, or religious-differentiated, etc.) meaning might be. Stratified disability has become visible along multiple dimensions. Quantitative research makes clear the impact of broad social fault

lines, as we elaborate in the next section. Most of what we know about childhood disability has come through an avalanche of demographic and health statistics; indeed, they provide the primary and

powertul frame through which we understand these social phenomena. This is clear in the rising proportion of children in special education relative to New York City birth rates (Lewin 2000). The professional expertise of statisticians is culturally dominant, as many social scientists have noted (Asad 1994; Daston 1987; Greenhalgh 2003; Krause 2001; cl. Hacking 1990), and we welcome it as a first cut in making clear the enormity of this complex landscape. Qualitative perspectives are less developed in the research literature. Yet we believe they have the capacity to reveal the many small-scale and daily practices we take for granted, as shown by some groundbreaking exceptions in anthropology and related fields (Frank 2000; Landsman 1999, 2000, 2003; cf. Murphy 1987). Additionally, a cottage industry of first-person accounts and familial memoirs give enormous insight into life-course issues (Beck 1999; Berube 1996; Moore 2005; Park 2002). These provide, we suggest, indices of the historicity, stratification, and struggles over the meaning of normality. Their analysis helps to illuminate the everyday impact of a changing technological horizon, the landscape on which babies—and the children and adults they become—are currently conceived, cared for, and stratified. As noted earlier, our concern lies with the representations and practices of kinship, community, and life cycle key to emergent understandings of disability as part of daily life. Neither the social construction of an embodied difference nor its consequences remain stable as individuals, families, and kin groups grow, grow up, and change. The cute kindergartener with a newly diagnosed learning disability holds a different valence as s/he grows into (or does not become) a high-schooler, a job-holder, a technical-school or college

student, a potential spouse or parent. Thus, until we breathe life

Enlarging Reproduction, Screening Disability 105 into reproductive stratification across the known fault lines of gender, socioeconomic class, racial-ethnic, religious, and national backgrounds, we cannot address the daily benefits and burdens entailed in adjusting nonstandardized newborns and children to an increasingly standardized world. Moreover, hierarchies are not shaped only along lines of class or race. Disability itself is stratified across its many medicalized and socialized categories, despite the strong and demo-

cratic demands of the disability rights movement that all forms of impairment be equitably understood and accommodated. One key division is the social visibility or invisibility of the differences to which kinship and community speak. Learning disabilities, ADHD, and mild mental retardation manifest themselves differen-

tially in social space when compared, for example, to the uses of wheelchairs, the stereotypes accompanying DS, or the marked profiles of people born with other visible impairments. Furthermore, a life-course perspective clarifies how we make meaning out of different kinds of disabilities as they change through individual, familial,

and social-life times. Arranging for an early-intervention infantstimulation program is not, for example, the same family task as rethinking assumptions about parental retirement when a young adult

offspring is unlikely to ever live independently or be adequately employed in order to cover the considerable expenses required to live with necessary forms of medical and social support. In a postFreudian world, a person with a disability can be presumed to have a different perspective on independence and life goals than parents, siblings, friends, caregivers, and bureaucrats. These varied relationships to visibility, invisibility, and life-cycle consequences of diverse impairments are hard to pry loose from the vast data sets currently populating the terrain of disability over time. It is therefore to the life cycle that we now turn.

Stratifying the Life Cycle As feminist anthropologists and their fellow traveling scholars have long noted, the universal “fact” of pregnancy is lived quite differently and specifically according to the social position and the access (or lack of access) it brings to other valued resources (e.g., Bledsoe 2002; Glenn, Chang et al. 1994; Martin 1987; Rapp 1999; Sargent 1989). Age of first and subsequent pregnancies, total completed family size, presence or absence of marital and kin-based support systems, religious institutions, and practices all intersect structural issues like

106 Rayna Rapp and Faye Ginsburg medical access to prenatal care, venue, and quality of birth services,

and many nutritional issues—subtle and not so subtle—affecting maternal/child heath. Some structural and institutional conditions may appear quite “experience far” (Geertz 1967). But if, for example, public struggles over the quality of schools, revised requirements for disability support entailed by federal and state welfare reform, or

the condition of the job market seem distant, they nonetheless are highly influential in the reproductive choices and outcomes with which mothers and others are faced. Here, we argue that this stratification is lived differentially across the life cycle and generations as well.

This is, for example, particularly apparent in a 2003 book by a team of quantitative sociologists who have taken on the vexing issue of LBW babies. Dalton Conley, Kate Strully, and Neil Bennett have parsed the dense data on LBW in the United States to offer a biosocial interpretation. Approximately 9 percent of US babies annually are now born at LBW (at or below 2,500 grams), and about 20 percent of them exhibit very LBW (at or below 1,500 grams). These very vulnerable babies are one of medicine’s great success stories: before World War II, most would have died from prematurity and its infectious sequelae. Since the advent of antibiotics and incubators in the 1950s and NICUs, with their sophisticated external respiratory systems in the 1960s and 70s, there has been a dramatic shift upward in neonatal survival rates. About 90 percent of the improve-

ment between 1960 and 1980 is attributed to the salvage of LBW babies who formerly would have died (Conley 2003: 11). Roughly speaking, the smallest of these very-LBW babies grow up to have substantial health impairments; the much larger group of just-LBW babies is likely to face more subtle educational challenges. While some escape unscathed, this overall pattern in disability is striking. We as a society now integrate a substantial number of babies whose medical success implies educational and health challenges throughout their early years and often throughout their life course. This, in turn, has consequences for new and experienced mothers—or, as one magazine for families with disabled children calls them by its title, Exceptional Parent. It also has an impact on siblings and extended family members, communities of support and derision, and the schools and other institutions in which these children will someday dwell. So it is not only the disruption of “the starting gate” of pregnancy and birth that needs examination: the world of families through the generations also requires our attention. And as “[a]verage birth weights among groups are very sensitive to social inequality such that Afri-

Enlarging Reproduction, Screening Disability 107 can Americans and the poor are at a disproportionate risk of being born LBW” (Conley, Strully, et al. 2003: 7-8), there are profound and often class and racialized consequences for the rest of their lives. A generation or two ago, we would not have discovered this problem. To complicate the example, African American LBW could easily (too easily) be attributed to a biological or genetic susceptibility, as

it runs in families, and newborn girls are at higher risk than newborn boys. Moreover (and frighteningly), there is substantial evidence that physiological stressors experienced by grandmothers are imprinted in ways currently unknown on the tiny bodies of their grandchildren (Conley, Strully et al. 2003). In other words, once LBW

enters one’s genealogy, its exit is hard to achieve. Yet even in such a seemingly intractable demographic, this team of sociologists argues convincingly that (While) biological and social advantage or disadvantage, inherited from previous generations, frequently interact with one another to determine a person’s social position ... if LBW parents enjoy a high income, the effect of parental LBW diminishes. Similarly, having been born LBW oneself significantly hinders education attainment, and hence long-term economic prospects. But if a low-birth-weight child grows up in a household with a high enough income, the biological effects of LBW may begin to recede (Conley, Strully et al. 2003: 121).

LBW thus presents a perfect object of nature/culture implosion that involves disrupted reproduction as it moves through time. At stake are the intimate cultural narratives of family concern and attentiveness and sibling competition and cooperation. At the same time, public and institutional forces are key: the economics of school-

enhancing employment lead, for example, to more successful jobs across the generations, and the politics of preventative programs and

practices, including the black box that stress represents nutritionally, medically, and financially, all enter into the meaning of being born LBW. Thus the educational component of learning disabilities so highly associated with LBW can only, we argue, be understood in its fuller social context. And this includes a domestic-cycle and life-

cycle perspective on how advantage and disadvantage pass down through the generations. This point is well made for the more generalized category of disabilities by Gail Landsman (2003) in an important contribution to the emerging qualitative research. When she undertook research with families of children enrolled in an early diagnostic program for

108 Rayna Rapp and Faye Ginsburg babies at risk at SUNY-Albany Medical Center, Landsman was struck

by the transformative narrative that mothers of tiny babies struggled to produce. Over five years’ time, their despair and anger mutated into a struggle with clinicians and other helping professionals who often failed to see the slow and quite subtle progress they individually diagnosed in these children. Often disparaged as “denial” or “subjectivity,” the insights of mothers and others were adjusted

to the lack of milestones when compared to the well-trod path of normal and normative child development as well as the polarizing discourse of medical personnel, often despite their best intentions. This change took time; it was not evident in the niche of reproduction but made itself visible like a negative floating in a chemical bath as it develops under specific conditions. Accompanying this experi-

ence of “mothering on Mars”* was also a transformed social landscape—dominant discourses often flattered the “special mom” with inappropriate and sugary praise that isolated her as a hero rather than supporting her as an ordinary woman in a struggle with extraordinary labor-intensive conditions of childcare. At the same time, Landsman found that many people subtly or overtly bestowed blame on mothers for causing the child’s disability. Clinicians, neighbors, church co-congregants, and mothers-in-law all queried, for example, what she had eaten and drunk during an otherwise uneventful pregnancy that produced a diagnosable child. So the life of the mother,

and by extension the father, siblings, grandparents, and others, was transformed over time by the birth of a baby who was diagnosably different. Other forms of social stratification deeply mark this m/othering. For example, the essays in Linda Layne’s edited collection Transformative Motherhood (1999) make the point that nonnormative motherhood takes on specific ideologies associated with “damaged goods” in a market-oriented, consumer culture that devalues mothering dis-

abled children, multiracial children, adopted children, and much more. The mother/child relationships described by Danielle Wozniak (1999), for example, focus on the gifts and burdens of legal fos-

terage, a state-regulated and culturally inferior context in which both hidden and overt disabilities could use healing. Often damaged by multiple losses and sometimes multiple threats, foster children

also may be relatively unadoptable because of more obvious and visible disabilities (Wozniak 1999). Likewise, Helena Ragone, and Frances Winddance Twine titled their collection on nonnormative, or problem-drenched parenting, Ideologies and Technologies of Mother-

hood (2000). Although the editors do not stress this aspect of the

Enlarging Reproduction, Screening Disability 109 book’s essays, a reader can glean a lot of information on the burdens and benefits of mothering under culturally disabling conditions across the life cycle. Prejudices of race, divorce, homelessness, and poverty affect the acceptance of mothers and their children.* Of course, this common experience of holding women accountable for the quality of their offspring—the “blame the mother syndrome”—is widespread and not limited to the mothers of children with disability. However, it is particularly present as an unfortunate

“learning experience” in our national culture, as mothers have to learn to insist that they are not the cause of symptoms, and that children need to be properly diagnosed and remediated. More positively and often unexpectedly, mothers and other family members often discover that disabilities in the family open up awareness of something rarely recognized in our highly rationalized, marketdriven culture. The experience of disability is fundamentally about the range and significance of our common humanity. In response to that experience, many have become “moral pioneers” in their families, schools, communities, and beyond (cf. Rapp 1999). Some— who already had a toehold in the world of media—have expanded beyond these domestic networks to make disabilities visible in the public domain.

Screening Disability [W]hat do movies have to do with disability rights?... If an issue doesn’t appear in print, on television, or in the movies to most people it doesn’t exist.... Clearly, the ways in which the disability experience has been perceived by the media remains severely limited. I spoke to a group of graduate students about the depictions of people with disabilities in film, television, and literature last week and one clear sentiment emerged; if a story—this is true with both news items and narratives—doesn’t fit into an existing frame, that is to say if it isn’t about heroic crips, tragic crips, or evil crips then most people can’t even process it because, for them a more accurate frame of reference does not yet exist.... Moreover, a case could be made that until those not yet in the disability club or in the know better understand the very real lives of people with disabilities; until they can better identify with our stories, disabled people, for all intensive purposes, will continue to be invisible. Until new narratives are seen, heard, and read, the general public will not be able to develop a new, more accurate frame of reference by which they can better understand our lives—and by extension, our issues (Carter-Long 2005).

110 Rayna Rapp and Faye Ginsburg Disability activist Lawrence Carter-Long’s grim appraisal of the place of disability in public media is well founded. Nonetheless, the media presence of disability as a fact of life—on screen and off—is clearly on the rise in popular television, independent film, Hollywood cinema, and on the web. These forms of positive public mediation play an important role in refiguring the cultural landscape for new generations engaging with the social fact of disability.’ Things were radically different a half century ago, as the social historian Martin Pernick makes chillingly clear; media images of disabled children were anything but sympathetic. Disabled minds and bodies were represented as a danger to the body politic, setting a stage on which acts of passive infanticide were regarded as acceptable (Pernick 1996). Thirty years ago, the “mediascape” (Appadurai 1996) began to change. It took the “moral pioneering” of one parent, Emily Kingsley, a scriptwriter for the children’s television program Sesame Street, to show how things might be different. When her son Jason was born and diagnosed with DS in 1974, his parents were told that their son “would never have a single meaningful thought”

and were counseled to institutionalize him immediately and “try again” (Kingsley and Levitz 1994: 3). Instead, his mother wrote him into the script of Sesame Street, where he appeared throughout his childhood. Contrary to the dire predictions for his intelligence, at age six he was “counting in Spanish for the cameras” (4). The Kingsleys’

cultural activism opened the door for people with other disabilities—people using wheelchairs, leg braces, and seeing-eye dogs—to appear as part of the quotidian world of mass media that is now an integral part of the public sphere of most postindustrial countries. Jason himself went on to coauthor the book Count Us In (1994) with his friend Mitchell Levitz, who also has DS. Later, his mother scripted a prime-time docudrama based on her family’s experiences, Kids Like These (Brown 1987). Of course, this ability to work in (and have ac-

cess to) such media venues is not simply a matter of individual achievement but also of the cultural capital of activist and professional families. As Michael Bérubé and Janet Lyon point out, “[T]heir

fame ... depends on their good fortune: not only were they born into extremely supportive families that contested the medical wisdom of their day, but they were born into families well positioned for activism” (1998: 282). Another mother, Gail Williamson, whose son Blair has DS and also has appeared on television, was moved to establish Hollywood’s first talent agency for disabled actors in the entertainment industry (Gray 1999).

Enlarging Reproduction, Screening Disability 111 In the late 1980s, many Americans first encountered DS through the virtual presence in their living rooms of Chris Burke, who became a teen star in NBC’s Life Goes On. Introduced by the Beatles’ popular song, “Life Goes On,” the show provided a realistic depiction of disability as part of everyday family life, while indexing, as the theme song’s lyrics do, an optimistic message of possibility. But Chris’s story is not only about his heroic triumph over adversity as an individual (Burke and McDaniel 1991)—it is imbricated in the complex nexus of changing contexts sketched above that have radically altered the biomedical, familial, practical, and legal narratives structuring disability in America over the last three decades. Inevitably, the advertising industry was quick to follow the lead of Life Goes On, recognizing the potential for growth, not only in direct sales to market niches ranging from psychotropic pharmaceuticals to adaptive technologies, but in a more indirect appeal to the loyalty of families with disabled members, through the inclusion of DS kids and teens in commercials for McDonald’s, Benetton, and even in popular newsprint advertising circulars. Such efforts have been subject to criticism from some activists for reducing issues of citizenship to consumption, but seeing people with visible disabilities in the landscape of popular and commercial culture has been embraced enthusiastically by the many families who identify with their presence as a sign of the growing public incorporation of this historically stigmatized difference. It speaks as well to the erasure of disabled characters that continues to prevail in the popular media, since the appearance of such figures, even in advertising, is still rare. Interestingly, recent television dramas not only make disability a prominent part of the narrative of important historical figures and their worlds, but they are also reflexive in structure, commenting on the ways in which disability was rendered invisible in the eras they depict. For example, nostalgia-hungry Americans watching Masterpiece Theater on PBS over the Christmas season of 2005, expected a costume drama of a British world on the brink of the transformation wrought by World War I. They got that and more. Director Stephen Poliakoff chose to tell this story from the point of view of a stigmatized member of the royal household: the young Prince John, whose epilepsy and learning difficulties were hidden from public view, hence the title “The Lost Prince.” This film was created in dialogue with a twenty-first-century media world in which disabilities are gradually “going public,” in contrast to the period a century earlier he was invoking. Poliakoff eloquently describes this process:

112 Rayna Rapp and Faye Ginsburg One morning in the spring of 1998 Isaw a photograph of an ungainly looking boy staring out of the front page of a national newspaper. He was dressed in the customary sailor suit that most Edwardian upperclass children wore, but there was something about his gaze that was both unsettling and welcoming. This was the first time I had seen what

Prince John had looked like, and I was immediately fascinated. I quickly found out that there was practically nothing about Prince John published in the public domain, most royal biographies confining themselves to a few sentences about the poor epileptic and autistic prince

who had to be sheltered away from the rest of his family and the world. But as I gradually pieced together a picture of Johnnie from the few snippets of information that were sprinkled over a wide range of royal histories, I realized that a different boy was emerging. It turned out Johnnie was very far from being the monster child that grew enor-

mous for his age whilst having the mental age of a three-year-old, which is the way, for instance, one article on the internet described him. Johnnie had learning difficulties and was prone to severe epileptic fits, but he was also capable of interesting and humorous observations about people and situations and inspired devotion and love

from his nurse Lalla, a devotion that lasted nearly half a century after his death.... For me, the most surprising modern echo of the lost prince is how, nearly a hundred years after the events I describe took place, we are only fractionally more flexible and wise about how we treat children who are “different” from the Edwardians (2005).

Another 2005 televised film, the Emmy-award-winning HBO drama, Warm Springs, tells the story of Franklin Delano Roosevelt’s struggle with polio, beginning in the 1920s. The film starts as a 39year-old FDR, whose political career is just taking off, becomes a paraplegic in 1921 due to a bout with polio. The narrative of the film

is shaped by the battle between the then contemporary dominant view—that the disabled should be sequestered—and the emergent radical position that they should not. These positions are embodied in the characters of his mother, Sara Roosevelt, who regards her son’s political life as over, and his wite, Eleanor, his staunch advocate de-

spite marital infidelities, and are then played in the broader political arena. FDR, discouraged and depressed by the lack of treatment, travels in 1924 to Warm Springs, a dilapidated spa in rural Georgia, where the water is rumored to provide “miracle cures” for those with polio, while Eleanor shakes off her shyness to become a public figure. By 1932, he is elected president, the first of his four terms. His cabin at Warm Springs is dubbed the “Little White House.”

Much like Poliakoff’s fascination with his discovery of the lost prince, Warm Springs’s scriptwriter, Margaret Nagle, was compelled

Enlarging Reproduction, Screening Disability 113 by the story of FDR’s polio, which had been “hidden in plain sight.” We quote her at length because her story reflects both a view of disability not available to prior generations and the inclusive perspec-

tive that comes from a life lived in intimate connection with this form of difference. I’ve always loved Franklin and Eleanor and been fascinated and intrigued by them. I read somewhere five or six years ago that Franklin was actually a paraplegic. And I kind of went, “Hey, whoa.” So I started going through the stacks at the Beverly Hills Public Library, and I found two books that were way out of print that had been written by people who had gone to Warm Springs and who themselves had polio.... So of course his disability wasn’t discussed or made public, not just because he was a public leader, but because people connote a lot of other things with disability ... you did not know how you got polio. There was no cure for polio. Most people with polio

died. If you were left a paraplegic or paralyzed, you usually died within a couple of years. People thought that polio went to your brain. That was one of the misnomers. They thought you got it potentially because of some moral failing, that you were maybe being punished by God. If you were a handicapped child in the United States at that time, you were denied public education. You were not allowed to go to school.... So there were all these very scary myths surrounding polio in general that would make it something that you would not discuss. Ever. Publicly. When someone becomes disabled that you love, your whole perspective on life changes. You revalue your values.... Just like the person who becomes disabled revalues their values.... I started to look at all these books and realized no one’s really covered this. And the reason was is that no one really wanted the extent of his disability to be known. And I understood this instinctually, because people are really afraid of disability. And they are afraid of people with disability. And it is still, even today, I know from whenever I go in public with my brother just how fundamentally uncomfortable people are with all of that (2005).

The brother she refers to is very much part of the motivation she brought to the film. Well, it was actually quite personal for me, because my own brother, my older brother became disabled in a car accident when he was little. And he and I grew up sharing a room. He was in a coma for a long time. He had to relearn absolutely everything. He did, finally, after years, get up and walk, and his speech was unintelligible, but I always knew what he was saying and I would translate for him. So our house

was sort of like a twenty-four-hour rehabilitation center. And that was my orientation to life in general. And it was interesting because

114 Rayna Rapp and Faye Ginsburg I was the baby, I didn’t know my brother before the accident. Everybody else did, and they all had a kind of grief in their eyes that I didn’t. I just took him at face value for who he was (2005).

While these films offer a wonderful illusion of transparency, gazing back on a prior generation’s struggle with less-enlightened views in which disabled Americans were kept out of public view, it is important to reflect on these films as social texts in and of themselves. It is no accident that mainstream media makers such as PBS and HBO, not to mention actors such as Kenneth Branagh, Andie MacDowell,

and Rosie O’Donnell (discussed below), invest their time and resources in these compelling stories about how families are able to transform the experience of disability. As researchers interested in the changing cultural landscape, we are equally concerned in understanding what happens “off screen.” For example, while none of the stars themselves are disabled in Warm

Springs, many of the other actors are, an important breakthrough that speaks to the legacy of the disability rights movement in this country. The fact that this is a relatively new development is clear from the following comments made by Laurel Lawson, one of the wheelchair-using actresses who appears in a very moving scene in the film, where she dances in her chair at a party at Warm Springs: All of the cast and crew have been very nice, and the leads have all come up to comment about how much they enjoyed watching our rehearsals and to ask questions about authenticity on gimp stuff. Margo is the official disability advisor being one of the last polio cases

in this country, and all three of us have been helping out in that aspect. It’s certainly been needed—the first instinct everybody has on crutches is to lift one leg up out of the way. We’ve carefully explained

that being paralyzed means that you cannot pick up your leg or indeed move it in any way.... The three of us have our own (excessively large) tent—since of course, we can’t get into a trailer, as even with a ramp, we wouldn’t have enough room to turn around (personal communication, 2005).

Representations of disability in the present tense are another more unruly matter. They are not tucked safely into historical eras; the task of reframing attitudes, especially among adolescents, remains arduous, particularly around issues of intellectual disabilities. In a recent national survey, for example, six-thousand middle-school students consistently underestimated the abilities of peers with intellectual disabilities; 67 percent would not spend time with a student

Enlarging Reproduction, Screening Disability 115 with an intellectual disability if given the choice, and almost 50 percent would not sit next to one on a school bus.°® This bias is examined across the life course and domestic cycle in Rachel Simon’s successful and compelling memoir, Riding the Bus with My Sister (2002), and its less successful adaptation as a Hallmark Hall of Fame TV movie in the spring of 2005 (Huston 2005). Both the book and the movie use the technique of flashbacks to show the love and frustration that accompany life with a developmentally delayed child from the point of view of a slightly older sister in a Jewish, middle-class family whose life is ripped apart for reasons left ambiguous. Is it Beth’s intellectual difference? The father’s over-

whelmed response to caring for four children at one time? The mother’s inability to survive as a single parent, influencing her increasingly terrible choices in later partners who become violent toward the kids? Yet beyond these ambiguities, one theme repeats itself: the siblings are being told again and again that their responsibility lies in keeping Beth as a family member. The parents, going against the mores of the time, resolutely refuse to institutionalize one of their children. Her siblings grow up knowing that Beth’s survival outside an institution is tied to theirs. In a key scene, Rachel (played by Andie MacDowell) and Beth (portrayed by Rosie O’Don-

nell) are at their father’s funeral, where Beth acts out, unable to bear the Jewish mourning rituals. The experience provokes a flashback as Rachel remembers the impact of her mother’s decision to keep Beth at home with the family from an early age. As Rachel looks back on her own successes, bought in part at the price of moving away from “Cool Beth” (as Beth calls herself), her now-adult sister living independently with much state and municipal aid in a medium-sized Pennsylvania city, she becomes curious about Beth’s stubborn insistence on doing things “her own way.”

This trait once divided the family as mother, father, sisters, and brother all responded differently to Beth’s intransigence. Beth has refused additional training, education, healthcare or a job: she dedicates her life to riding the city buses on an exacting 7-days-a-week, 52-weeks-a-year schedule. Rachel reluctantly agrees to spend a year commuting between her own life and Beth’s and eventually comes around. Rachel describes the enlightenment she receives from witnessing the deep affection and even tough love that the bus drivers—our modern philosophers of public intimacy—bestow on Beth. Rachel’s deep connection to an adult sibling who is developmentally delayed only comes to “make sense” in this intimate yet public sphere, marked indelibly by her sister’s visible presence (and difference), the

116 Rayna Rapp and Faye Ginsburg consequence of her parents’ refusal to sequester her. It is the shadow of institutionalization—and the victory of deinstitutionalization that

grew from a public and international movement against it—that haunts Rachel’s experience of family life, and the year on the bus with

her sister is what transforms her. As the publicity for the book puts it, “It will make you prouder of your distinct individuality while also making you proud to be part of the whole human family.” This trope of an enriched and diverse human family underlies a growing number of mainstream TV movies, independent films, and Hollywood creations. We suggest that these representations are not an accident. They emerge not only from the efforts of the disability rights movement, but from the increasing survival of individuals, families, and communities touched by the presence of disability.

Conclusion We have argued that the concomitant rise of new technologies in two key fields—on the one hand, medical support for reproduction, vulnerable newborns, and genetic testing, and on the other, the increasing visibility of disability across a range of popular media—is not accidental. Beyond simple correlation, we suggest that these different fields of cultural production in medicine and media, linked to the care of the body and its representation, are synergistic, producing an emergent social field. Without question, “disrupted reproduction” now extends far beyond pregnancy, birth, and individual choice; it is eminently social

and cultural, breaching the walls of maternity wards and the temporalities of pregnancy and infancy. The survival of babies who might well have died in prior times has a ripple effect across many social domains. A focus on disability makes this stunningly clear, as the arrival of nonnormative family members—whether at birth or later in

the life cycle—is a “disruption” now spanning the life course, restructuring relations among kin, community, and caretaking institutions. In turn, these quotidian changes in family life are reflected in publicly mediated culture. As we discuss in the early part of this chapter, developments in medicine and media have enabled the increased survival, as well as visibility, of those with disabilities. They shape and are shaped by an even broader field of emergent historical transformations in law, education, and social action. As disability activists remind us, much more remains to be done in these areas of public life where bias is

Enlarging Reproduction, Screening Disability 117 still the rule rather than the exception. Nonetheless, it is important to remember that much has been accomplished. Only thirty years ago, the notion of civil rights for the disabled was almost as invisible as the presence of nonnormative bodies in public media. Indeed, the battle over how FDR might be represented at his long-delayed memorial site in Washington, DC crystallizes this historical shift. Dur-

ing his political career, the stigma attached to disability caused him to hide the physical evidence of his paralysis, his wheelchair. Some argued that this etiquette should be honored in contemporary representations, while others allied with disability activism argued for the profound significance of rendering visible to the public and future generations his role in leading the nation through war and the Depression from a wheelchair. No doubt because of the changed political and cultural climate, the disability activists won this battle over representation. For future generations, the fact of FDR’s use of a wheelchair not only will be visible but also noncontroversial, exemplifying the kind of synergy between medicine and media changing the social field. This broader perspective, an “enlarging reproduction,” encompasses the medical and screen technologies that now transform the possibility of life itself and its recognition. Our use of the term “screening disability” implies far more than the neoeugenic possibilities sometimes associated with genetic testing; here, it invokes the increasing cultural presence (rather than absence) of disability in our public media. We see such work as a sign of our collective

capacity to respond creatively to difference, underlining the promissory note of our enlarged humanity.

Acknowledgements We thank Marcia Inhorn for her tireless creativity and organizational skill in calling the conference and its ensuing book into existence. We are honored to be a part of it.

Notes 1. Reproductive disruptions take many forms. In their call for papers on “disrupted reproduction,” the conference organizers noted at least three themes: reproductive disruptions are historically and politically specitic; reproductive disruptions exist in the “intersections of power,” that is, they are highly stratified; and reproductive disruptions participate in redefin-

118 Rayna Rapp and Faye Ginsburg ing not only the abnormal but the normal as well (cf. Canguilhem 1978).

It is our intention to show these themes at work in arenas not usually tied to the niche of reproduction and its disruption. 2. As we have argued in a series of related articles (Ginsburg and Rapp 1999; Rapp and Ginsburg 2001), these two socially segregated domains of knowledge—reproduction and disability—are increasingly brought into close conversation as the telos of technological perfectibility meets the democratic impulse of social movements militating for new forms of

inclusion. Otherwise and more simply said, our technology beckons, tempts, and encourages us to value the dream of “perfect babies,” whatever their gendered-personal, social, and economic costs. At the same time, our political and cultural arenas are home to new constituencies demanding a voice in how their impairments will be categorized, compensated, and sometimes contested. 3. Faye Ginsburg coined this phrase to describe the experience of mothering an anomalous child for whom there is no conventional knowledge, advice manuals, or collective common sense. 4. In terms of this literature, we note too that the gender bias inherent in taking seriously the care of young children is magnified when our attention turns to fetuses, babies, children, and young adults with disabilities (Landsman 2003; Rapp 2001; cf. Levine 2000). Reproduction’s association with women made it less prestigious as a research subject until recently, when a cottage industry of scholarship, fueled by the intellectual energy of feminist commitments and questions, transformed the situation. We would argue that this lack of knowledge is especially significant

when a vulnerable infant turns into a person with a disability, with whom caretakers and intimate others often share a “courtesy stigma” (Goffman 1963). 5. Recent works in independent film include the quirky drama The Station Agent (Tom McCarthy, dir., 2003), starring “little person” actor, Peter Dinklage, and Murderball, the feature-length documentary on disabled men who play wheelchair rugby (Dana Adam Shapiro and Henry-Alex Rubin, dirs., 2005). In Hollywood cinema, recent examples include The Ringer (Barry Blaustein, dir., 2005), which was supported by the Special Olympics, and Radio (Michael Tollin, dir., 2003), the story of an athletic coach who takes a developmentally disabled man under his wing. A Google search for websites yields an impressive 351-million possible sites on disability. Two examples of compelling community-building sites are Disability Webzine, , and Learning Disabilities Association of America, (both accessed 19 Jan 06). 6. This survey, which was carried out by the Center for Social Development and Education, at the University of Massachusetts, Boston, was quoted in Bauer 2005.

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Chapter 4

OPENNESS IN ADOPTION:

RE-THINKING “FAMILY” IN THE US Harold D. Grotevant

Introduction He societies always make provisions forbiological the nurturing of have children who had couldtonot be raised by their parents. Across cultures and historical time, such arrangements have typically occurred within the extended family. More recently, Western societies have established legal proceedings by which parenting rights and responsibilities of the child’s birth parents are terminated and transferred to others who will raise the child. This process, adoption, is one example of reproductive disruption. Problematizing reproduction through the study of adoption can yield important insights about culture and in particular, the meaning of “family” and how it is changing. This chapter first introduces

adoption as an example of reproductive disruption and then outlines changes in adoption practice that have occurred in recent years, culminating in four distinctive “worlds” of adoption in the US. The issue of contact between a child’s adoptive family and birth relatives is used to highlight the complexities presented by adoption, and recent research findings from a US longitudinal study on openness in adoption are summarized. The chapter ends with reflections on the ways in which adoption reveals insights about American culture.

Openness in Adoption 123 Adoption as Reproductive Disruption The word “disruption” typically carries a negative connotation—some-

how, the expected or natural course of events is thrown off course. “Reproductive disruption” implies that the “normal” or “default” course of reproduction (conception, birth, and rearing within the same biological family unit) is not followed. Within this context, adoption can certainly be considered an example of reproductive disruption. However, the degree to which adoption is a negative process for the individuals involved is a separate issue and a question involving considerable debate. Whose lives are disrupted by adoption? Children’s lives are disrupted in the sense that they become nurtured and reared by adults

who are not their biological parents. Children may be placed for adoption for many reasons: because they were abandoned, because they were not wanted (e.g., the product of rape), because their birth parents felt unable to provide the quality of life they wished them

to have, or because court proceedings removed them from their parents’ home. It is assumed that this discontinuity is ultimately in the best interests of the child. Although disconnection from the child’s birth parents may be both necessary and positive, the child may be cut off from his or her family history and other genetic kin in the process. It must also be noted that, in most circumstances, the child has no say in the adoption.

Birth parents’ lives are disrupted because the child they conceived and gave birth to is given to someone else to raise. The disruption may be welcomed, to the degree that the placement is considered a “voluntary relinquishment.” However, the placement may be vigorously contested if the child is removed from his or her family be-

cause of the court’s determination that the parent(s) are unfit to raise the child (e.g., due to abuse, neglect, criminal behavior, chemical dependency, or serious mental illness). Although the discontinuities in children’s and birth parents’ lives are clear, the reproductive disruption for adoptive parents is less obvious, as they are the ones gaining a child. However, most adoptions in Western societies today occur because of adoptive parents’ infertility (Fisher 2003). Their reproductive lives had already been disrupted before the adoption took place. In addition, they will be raising a child who is not biologically theirs and whose genetic history may

be unknown to them—a second form of disruption. In addition to those who adopt because of infertility, there is a significant number of “preferential adopters” who choose to adopt despite having no

124 Harold D. Grotevant infertility problems (Feigelman and Silverman 1983). Although preferential adopters do not need to deal with the disruption of infertility, they may still experience discontinuities because the child they adopt is not genetically theirs.

Changing Adoption Practices The practice of formal adoption in the US has evolved considerably in the past two centuries (see Carp 1998, 2002, 2004, for thorough discussions of these changes and their historical and cultural con-

texts). In the mid nineteenth century, laws about the termination and transfer of parental rights were established. Policies involving confidential records were established in the early twentieth century in order to protect the children, birth parents, and adoptive parents from the stigma associated with their respective situations: for the child, being born out of wedlock; for the birth parents, having a child outside of marriage; for the adoptive parents, being infertile. As part of the legal process of adoption, an amended birth certificate was issued, listing the child’s adoptive parents as his or her parents. Although original (preadoption) birth certificates were closed to public inspection, they were initially accessible to the adoptive parents, birth parents, and adoptees (Carp 2002). However, by the mid twentieth century, such contidential records became sealed—even inaccessible to the parties to the adoption themselves. Practice wisdom at the time held that the most important consideration was the child’s nurturance by the adoptive family. This consideration trumped adoptees’ rights to maintain connection with their genetic parents or the birth parents’ rights to know about the well-being of their children. A major shift in adoption practice has occurred over the past thirty years. The change itself is exemplified in how adoption is defined. The first part of the following definition (offered by Reitz and Watson 1992) is consistent with how adoptions were viewed throughout most of the twentieth century: “We define adoption ... as a means of providing some children with security and meeting their developmental needs by legally transferring ongoing parental responsibilities from their birth parents to their adoptive parents....” (11). However, the next clause of the definition represents a sea change in the way adoption is currently viewed: “recognizing that in so doing we have created a new kinship network that forever links those two families together through the child, who is shared by both” (11). The earlier model involved substitution. Relationships established through

Openness in Adoption 125 birth were severed, and parenting rights and responsibilities were transferred to others. The newer model is additive: parenting rights and responsibilities are transferred, while connections established by birth are maintained yet significantly transformed. Connections established through adoption are increasingly diverse. Infants and older children, sibling groups, and children with disabilities are adopted by those who are married, in committed same-sex relationships, or single. Children may be of a different race, ethnic-

ity, or nationality than their adoptive parents or other children in the family. They may have lived with their birth families for a number of years before being moved into foster care and then placed for adoption. The next section describes the four very different types of adoption now practiced in the US.

Four Worlds of Adoption Adoption touches many lives in the US. More than 5 million persons in the US were adopted as children (Center for Adoption Research and Policy 1997). Approximately 1.5 million children age 18 or under currently live in adoptive families (Fields 2001). The US Census for the first time in 2000 included the category “adopted son/daughter” and provides the most comprehensive current figure for adoptions in the US, placing the number of adopted children under the age of 18 at 2.5 percent of the population (Kreider 2003). As many as five hundred thousand American women are seeking to adopt (National Center for Health Statistics 1997). Taken together, almost 60 percent of Americans have a personal connection to adoption: the person is

adopted, knows someone who has been adopted, has adopted a child, or has placed a child for adoption (Evan B. Donaldson Adoption Institute 1997). Although all adoptions involve the transfer of parental rights and responsibilities, there are four distinct worlds of adoption in the US, each with its own population dynamics, political controversies, and

issues. The four categories include international adoptions, adoption of children from foster care, relative adoptions, and domestic adoptions that are voluntary relinquishments. Alongside these categories of formal (or legal) adoption, many children live with biological or fictive kin other than their parents in fluid, often temporary situations (kinship care). Other children are in the foster care system, wards of the state who are cared for by foster parents whose official obligations to them end when the child reaches the age of eighteen.

126 Harold D. Grotevant Further discussion of kinship care and foster care are beyond the scope

of this chapter (see Hegar and Scannapieco 1998, for further information). However, it should be noted that these arrangements are also examples of reproductive disruption worthy of consideration. In order to understand adoption as a form of reproductive disruption, we must take seriously Reitz and Watson’s definition of the adoptive kinship network (above). Adoptive relationships do not stop at the boundary of the nuclear family. Adopted children have

relationships (real or nascent) with their families and cultures of birth in addition to their families and cultures of rearing. Yet kinship network relationships play out differently in the four worlds of adoption, as we shall see below. International Adoptions

The number of infants brought to the US from other countries (most notably China, Russia, Guatemala, and South Korea) has more than tripled, from 7,093 in 1990, to 22,884 in 2004, as infertile, predominantly white couples seek healthy children and babies to adopt (US State Department 2005).' The number of international adoptions in the US continues to rise each year. The majority of internationally adopted children are placed early: 40.1 percent were adopted under

the age of 1 year, and a total of 85.3 percent were adopted by the age of 4 years in fiscal year 2004 (US Department of Homeland Security 2004).

Many assume that in international adoptions, contact with the child’s birth family is impossible. This is true in some cases, especially

for children who were adopted from orphanages after they had been abandoned.” However, for certain countries of origin, there are increasing opportunities for contact with birth relatives, as agencies in both the country of origin and the “receiving country” acknowledge the importance of making contact of some form possible. Even when contact with a child’s birth-family members is not possible, many children visit their countries of origin in order to visit the or-

phanage or foster home where they stayed after birth or to learn more about their birth culture (Meier 1999). Adoption of Children from Foster Care

As of August 2004, there were approximately 523,000 US children in foster care. Approximately 118,000 of these were categorized by the government as “waiting to be adopted” (AFCARS 2004), which means parental rights had already been terminated or there was a goal of adoption for these children. The mean age of children in fos-

Openness in Adoption 127 ter care was 10.2 years; the mean age at which they had been removed from their parents or caretakers was 5.0 years. Approximately 50,000 children were adopted from the foster care system in fiscal year 2003. In contrast to the internationally adopted children mentioned above, the mean age of children adopted from the foster care system was 7.0 years; 51 percent were age 6 years or older at adoption (AFCARS 2005).

The issue of contact with birth relatives following involuntary termination of parental rights is very complex (Smith and Howard 1999). Although the courts may have deemed that it is not in the child’s best interests to stay with his or her birth parents, older children may have strong ties with extended family members or may want to maintain connections with siblings placed in other adoptive families. Elsbeth Neil and David Howe (2004) have pioneered a useful transactional model for thinking about how contact might work

under circumstances that differ as a function of the age and preadoption experiences of the child, the adoptive parents’ psychological openness toward contact, and birth relatives’ abilities to be collaborative partners in the process. Relative Adoptions

Relative adoptions primarily include two situations: the adoption of a child by a stepparent, or adoption of a child placed in foster care by a relative such as a grandparent, aunt, or sibling. Statistics from 1986 (Stolley 1993) and 1992 (Flango and Flango 1994) reveal that approx-

imately 53,000 US children were placed annually with relatives. Contact in the case of relative adoptions has been discussed in the literature on divorce and stepfamilies (e.g., Wolf and Mast 1987). Common parenting challenges include the need to have clear agreements about the rights and responsibilities of the custodial and noncustodial parents, procedures for working through difficulties, and preventing the child from creating an inappropriate coalition with one parent against the other. Beyond the immediate parenting issues, regulation of boundaries with the various sets of grandparents and maintaining contact with siblings may also provide challenges. Domestic Adoptions: “Voluntary Relinquishments”

The number of US children placed voluntarily for adoption is the smallest of the four worlds of adoption, estimated at 14,000 in the year 2003 (National Adoption Information Clearinghouse 2005). The

notion of contact with birth relatives following voluntary termination of parental rights was pioneered in the context of domestic,

128 Harold D. Grotevant agency-mediated adoptions. When agency staff began experimenting

with openness in the 1980s, many questions were raised (McRoy,

Grotevant, and White 1988). Will contact with birth parents be harmitul to adopted children? Will they be confused about who their “real” parents are? Will adoptive parents always feel that the child’s birth relatives are looking over their shoulder as they develop their parenting role? Will they fear that birth parents will attempt to reclaim their child? Will birth parents find it difficult to deal with the psychological loss of the child they continue to see, making it im-

possible for them to move on with their lives? These issues motivated the launch of the Minnesota/Texas Adoption Research Project,

which I now introduce as a case study of contemporary issues in adoption, revealing a form of reproductive disruption.

Research on Openness in Adoption The Minnesota/Texas Adoption Research Project (H. Grotevant and R. McRoy, Principal Investigators) was launched in the mid 1980s in order to contribute to our understanding of relationships and developmental outcomes for members of adoptive kinship networks

(adopted children, adoptive parents, birth parents) that vary in degree of contact between the child’s birth relatives and adoptive family members. Although much is known about traditional family environments that lead to healthy outcomes for children and youth, the intent of our study has been to contribute to scientific understanding of the basic processes in complex families, including adoptive and birth families, and how they are connected to psychological and social outcomes. Even though infant placements currently constitute a relatively small proportion of total US adoptions, they provide an important window for understanding how different openness arrangements “work” without the additional complicating factors imposed in the case of international adoptions (e.g., potentially ditfferent ethnic background of parents and child, ethnic identity, and cultural socialization issues) or special needs adoptions (e.g., children’s disabilities or history of abuse or neglect). Each of the families in the project adopted a child in the late 1970s or early 1980s. Families and birth mothers were first interviewed between 1987 and 1992, when the children were between the ages of four and twelve (Wave 1), and again between 1996 and 2000, when the children were between the ages of twelve and twenty (Wave 2). (For detailed information about the participants, procedures, and

Openness in Adoption 129 methods, see Grotevant and McRoy 1998; Grotevant, Perry, and McRoy 2005). Adoptive families and birth mothers were recruited for the study

through thirty-five adoption agencies located across the US. We sought families in which the target child was adopted through an agency before his or her first birthday; in which the adoption was not transracial, international, or “special needs”; and in which both adoptive parents were married to the partner they had at the time of the adoption. We simultaneously sought the birth mothers who made adoption plans for the children placed with these couples. Participants in the study were located in twenty-three different states, from all regions of the US. At Wave 1, the study’s participants included 720 individuals: both parents in 190 adoptive families, at least one adopted child in 171 of the families, and 169 birth mothers. The vast majority of adoptive parents were Caucasian, Protestant and middle to upper-middle class, reflecting the population of families who adopted infants through private agencies at that time. Virtually all adoptive parents in the study had adopted because of infertility. The birth mothers ranged in age from 14 to 36 years (a mean of 19.1) at the time of delivery. The most common reasons for placing their children included the desire for the child to have a better future than they felt they could provide and the desire for the child to grow up in a two-parent home.

At Wave 2, participants included the parents and target adopted adolescent from 177 adoptive families: 173 adoptive mothers, 162 adoptive fathers, and 156 adopted adolescents (75 boys and 81 girls). At Wave 2, data are also available on 88 siblings and 127 birth mothers. The project has focused on two key lines of work. First, it asks what

kinds of adoption arrangements we found in terms of contact and how these contact arrangements have worked. Second, the project focuses on individual outcomes for adopted children and adolescents, adoptive parents, and birth mothers by looking at issues such as adjustment, self-esteem, and identity. Relationships within the Adoptive Kinship Network

Openness Arrangements Our initial conceptualization of openness, based on existing literature and discussions with staff at adoption agencies, posited three levels of openness: confidential or closed adoptions, in which no identifying information was shared between members of the adoptive and

130 Harold D. Grotevant birth families and no contact had occurred; mediated (or semi-open or indirect) adoptions, in which contact did not include identifying information and communications were transmitted through a third party (typically a social worker at the adoption agency); and fully disclosed open adoptions, in which parties had each others’ names and contact information, and communications were handled directly among family members (McRoy, Grotevant, and White 1988). We soon found that these categories did not fully describe the experiences of our participants. Within confidential adoptions, there were cases in which updated information was sent to the adoption agency for inclusion in the child’s file but was not necessarily intended for immediate transmission. Some contact had stopped since our last visit,

and some contact appeared to be temporarily paused. In addition, there were large variations in the intensity of contact (frequency, personal nature of the contact, e.g., a picture is more personal than a purchased gift), type of contact (e.g., letter, picture, gift, phone call,

email, visit), and whether agreements were verbal or written. Managing Contact The management of contact in open adoptions involves a complex dance in which the roles and needs of the participants change over time, affecting the kinship network as a whole. There is no uniform

pattern for open adoptions. Adoptive kinship networks have contact by different means, among different people, at varying rates, and with varying degrees of interest. Successful relationships in such complex family situations hinge on participants’ flexibility, communication skills, and commitment to the relationships. Members of adoptive kinship networks involved in ongoing con-

tact found that their relationships were dynamic and had to be renegotiated over time. Early in the adoption, meetings were especially

important for the birth mothers, who were very concerned about whether they had made the right decision, whether their child was safe and secure, and whether the adoptive parents were good people. After a while, birth mothers’ interest in contact sometimes waned, especially as they were assured that their child was thriving. With the

passage of time, many birth mothers became involved in new romantic relationships, sometimes taking attention away from the adoptive relationships. According to the adoptive parents, the ability of the birth mothers to provide information when requested was not always

in tune with the timing of the request (Wrobel, Grotevant, Berge, Mendenhall, and McRoy 2003). Adoptive parents tended to become more interested in contact as they became more secure in their role

Openness in Adoption 131 as parents. As the children grew older and understood the meaning of adoption (see Brodzinsky, Singer, and Braff 1984), their questions tended to put pressure on the adoptive parents to seek more information or contact (Wrobel, Kohler, Grotevant, and McRoy 1998, 1999). When children were in adoptive kinship networks involving contact with birth-family members, child adjustment was related not only to qualities of relationships within the adoptive family but also to collaboration in relationships between the adoptive parents and birth-

family members involved in contact. Collaboration in relationships is an emergent property of the adoptive kinship network, characterized by the ability of the child’s adoptive and birth parents to work together effectively on behalf of the child’s well-being. It involves collaborative control over the way in which contact is handled and is based on mutual respect, empathy, and valuing of the relationship. Higher degrees of collaboration in the adoptive kinship network were associated with better adjustment during middle childhood (Grotevant, Ross, Marchel, and McRoy 1999). Outcomes for Individuals in the Adoptive Kinship Network

At the time the study began, a major question was whether contact would be harmful for any of the kinship network members. The effects of openness were framed as potential disruptions in the lives of both adoptive family and birth-family members. Psychoanalytically oriented practitioners (e.g., Kraft, Palombo, Mitchell, Woods, Schmidt, and Tucker 1985) argued that children having birth-family contact would be confused because they would not know who their “real” parents were. They also felt that adoptive parents’ sense of entitlement to take on the full parenting role would be hampered because birth-family members would be intruding or perceived as

intruding. Furthermore, they felt that ongoing contact with the child would prevent birth mothers from reaching a sense of resolution of the grief associated with the loss (placement) of their child. Our work to date has found no evidence in support of the claim that contact, in and ot itself, is necessarily harmful to its participants. This will be illustrated by key findings about adoptees, birth parents, and adoptive parents. Child and Adolescent Adjustment At Wave 1, Harter’s Self-Perception Scale for Children, a measure of self-esteem, was administered to all children over the age of 7.5 years. The children as a group scored within the normal range on this scale. Average levels of self-esteem did not differ by level of openness in the

132 Harold D. Grotevant children’s adoptions (Wrobel, Ayers-Lopez, Grotevant, McRoy, and Friedrick 1996). At Wave 1, there was also no relationship between the level of openness and the children’s socioemotional adjustment, as measured by the Child Adaptive Behavior Inventory (Grotevant and McRoy 1998). At Wave 2, there was no relationship between the level of openness and adolescents’ internalizing or externalizing behavior problems as reported by their parents (Von Korii, Grotevant, and McRoy, 2006). Adolescents’ self-reports indicated a slightly lower level of externalizing problems in ongoing, fully disclosed adoptions than in continuously confidential adoptions, contrary to the predic-

tion of those who expected that contact with birth parents would provoke negative psychosocial outcomes for children and adolescents (Von Korff, Grotevant, and McRoy, 2006). However, relationship qualities such as collaboration in relationships (Grotevant, Ross,

Marchel, and McRoy 1999) and perceptual qualities such as perceived compatibility of the child with the family (Grotevant, Wrobel, van Dulmen, and McRoy 2001) were predictive of adjustment across openness levels.

Birth Mother Grief Resolution Grief resolution was rated from extensive interviews conducted with the birth mothers at Wave 1 and Wave 2. At both, birth mothers in fully disclosed adoptions had lower ratings of adoption-related grief than those in confidential adoptions, contrary to those who expected

that the contact involved in open adoptions would prevent birth mothers from resolving their sense of loss (McRoy, Ayers-Lopez, Henney, Christian, and Gossman 2001). Birth mothers in stopped mediated adoptions showed the highest degree of unresolved adoption-related grief and loss at Wave 1 (Christian, McRoy, Grotevant, and Bryant 1997). In other words, the greatest difficulties seemed

to be faced by birth mothers who had had some contact but then lost it. There were no significant differences by openness level associated with birth mother regret about the decision to place. At Wave 2, most birth mothers indicated that placing a child for adoption had no effect or a consistently positive effect on their relationships with their current romantic partner or spouse. The majority of the birth

mothers’ romantic partners were not directly involved in contact with the adoptive family or adopted youth. However, even when the

openness level was controlled, birth mothers whose partners had higher levels of participation in the adoption were more satisfied on average than those who had lower levels of participation (McRoy, Ayers-Lopez, Henney, Christian, and Gossman 2001).

Openness in Adoption 133 Attitudes and Feelings of Adoptive Parents

At Wave 1, when compared to parents in confidential adoptions, those in fully disclosed adoptions generally reported higher levels of

acknowledgment of the adoption, more empathy toward the birth parents and child, stronger sense of permanence in the relationship with their child as projected into the future, and less fear that the birth mother might try to reclaim her child. Despite these mean dilferences, variations within levels of openness were present (Grotevant, McRoy, Elde, and Fravel 1994). Study Conclusions

Our study has found no evidence that contact is inherently harmful. The children in open adoptions were not confused nor did they have lower self-esteem or poorer adjustment than other adopted children. Adoptive parents in open adoptions were actually less fearful of reclaiming and felt more in control than did parents in confiden-

tial adoptions. And birth mothers in fully disclosed adoptions felt less unresolved grief than did their peers in confidential or mediated adoptions. For adults who want an open adoption, it can work well. However, it makes family relationships more complex and increases the need for communication and flexibility. Because each arrangement presents distinctive challenges and opportunities, we believe that no single arrangement is best for everyone (Grotevant and McRoy 1998; Neil and Howe 2004). Even though we have found no evidence that contact is harmful

(in terms of the constructs we have studied, such as self-esteem, psychological adjustment, grief resolution, etc.), do our findings suggest that adoption should not be considered a form of “reproductive

disruption” or that open adoptions are less disruptive than others? In general, all adoptions (regardless of contact) share the various aspects of reproductive disruption mentioned in the beginning of this chapter, to the degree that they share elements of birth parents’ inability or unwillingness to parent the child, adoptive parents’ infertility, and/or adopted children’s separation from their birth relatives and family histories. Adoptions involving contact may even highlight

reproductive themes. For example, contact may heighten a child’s awareness of self as a cause or consequence of reproductive disruption. Although virtually all adopted children wonder about their birth families and the circumstances of their conception and birth, open adoptions may afford children the opportunity to ask their birth

134 Harold D. Grotevant parents directly about these questions. Thus, although all adoptions involve reproductive disruptions of one form or another, different types of adoptions may highlight different issues or provide avenues for dealing with them in distinctive ways. We still have much to learn about openness in adoption. Analyses of Wave 1 and 2 data continue, and we are currently conducting Wave 3 of the study, which focuses primarily on the adoptees as young

adults in their twenties. How have they fared through the transition

known as “emerging adulthood” (Arnett 2004)? How have their family experiences while growing up set the stage for their creation of new families as adults? For those in confidential adoptions, how many have decided to search for birth-family members, and what

have their experiences been? For those who had contact as children, have they chosen to maintain the contact now that they are adults? How will their reproductive experiences as young adults reflect aspects of the reproductive disruptions that were part of their developmental histories?

Situating Adoption in its Multiple Contexts Adoption is not just about finding families for children who cannot be reared by their biological parents or finding children for those who want to be parents. Adoption is embedded in a complex web of economic, political, and cultural forces and informs us about the dynamics of those forces. It also challenges how we think about reproduction and about family. Adoption: Holding Up the Mirror to Cultural Paradoxes and Contradictions

Adoption practices and policies reveal cultural attitudes and expose some of the fault lines in American society, especially with regard to attitudes about individual vs. collective responsibility, race, and class. For example, adoption in the US reflects the priority given to individual (rather than collective) responsibility in contemporary American attitudes and values. The predominant reasons for voluntarily placing a child for adoption in the US are so that the child would have a better life economically and so that the birth mother would be able to realize her educational and vocational plans (Wiley and Baden 2005). Contrary to stereotypes about young, irresponsible birth mothers, those who make adoption plans tend to be older (late rather than early teens), have higher vocational aspirations, and have clearer

Openness in Adoption 135 life goals than those who have abortions or choose to parent their children (Wiley and Baden 2005). However, the vanishingly low number of voluntary infant placements in western Europe suggests that if a better social safety net were available in the US, fewer women would choose to place their children for adoption. As Katarina Wegar (1997) has noted, poverty is not necessarily inherent in single motherhood; it results from policies that create gaps in health

care, child care, educational support, and living support for those who parent without adequate personal resources, such as a job that pays a living wage and includes health insurance. With regard to race, the majority of the more than 118,000 children in the child welfare system legally available for adoption are children of color; approximately 40 percent are African American.’ However, the largest number of clients seeking to adopt are white. Barriers to same-race placements and to transracial placements conspire against finding permanent homes for these children. Gilles and Kroll (1991) identified the following barriers to placement of African American children with African American parents: agency procedures developed from white middle-class perspectives, unaffordable fees, historical tendencies in communities of color favoring kinship adoption, negative perceptions of agencies and their practices, lack of minority staff, and inflexible standards. For these reasons, many

adoption agencies have been unsuccessful in attracting sufficient numbers of prospective African American adoptive parents. With regard to transracial placements, both the African American and Native American communities have been vocally opposed to the adoption of their children across racial lines because they feel that European-American parents are not able to provide effective cultural socialization for their children (e.g., National Association of Black Social Workers 1994). The Indian Child Welfare Act of 1978 dictates the placement order for Native American children. Second,

many prospective adoptive parents wish to adopt an infant rather than an older child from the child welfare system. Thus, despite the large number of children awaiting permanent homes, the dynamics of race relations in the US introduce impediments to their adoption. Another dynamic revealed through this analysis is that prospective adoptive parents from different backgrounds have differential access to types of adoptable children. For example, adoptive couples over the age of 45, single parents, or gay or lesbian couples might find it much easier to adopt an older child with special needs who is part of a sibling group than a single healthy white infant. Different costs are associated with different types of adoptions. For example,

136 Harold D. Grotevant the cost of adopting a child from foster care might range from $0 to $2,500. Offsetting these costs, adopters of special-needs children may be eligible for various subsidies, reimbursements for adoption costs, and tax credits as well. On the other hand, the cost of adopting a healthy US infant from a licensed private agency could exceed $40,000 (NAIC 2004). The economics of adoption add layers of concern about how the practice of adoption, which is purportedly for the benefit of children, reflects American attitudes about race and class. As D. Gerow (2002) challenged, “The business of infant adoption is out of control. The affluent can buy any commodity they desire, including babies, while at the same time, poverty is the leading cause of relinquishment” (4). Adoption: Challenge to “Normal” Reproduction

The age at first marriage for Americans has been rising for a number of years. Connected to the delay in marriage has been an increase in infertility; nevertheless, most couples want the experience of parenting. The disruption of infertility means that those seeking to parent, blocked from the “normal” reproductive pathway, are faced with a number of choices. More options are available through assisted reproductive technology (ART) than ever before, but ART procedures are expensive, intrusive, time-consuming, and do not always result in pregnancy. Thus, the demand for adoption continues to be strong. Prospective adoptive parents quickly learn that they must be astute consumers in order to identify viable options, navigate complex bureaucracies, and anticipate how their family’s lives may change. For example, the availability of adoptable children differs across the

four worlds of adoption and does not always match the nature of the demand. Although most in the largest population of prospective adoptive parents (white, heterosexual couples) would probably prefer to adopt a healthy white infant, the available pool of such infants is quite small. This is because the stigma of parenting outside of marriage has been, in part, replaced by the stigma associated with placing a baby for adoption (Fisher 2003). The availability of reliable

contraception and legal abortion has also reduced the number of unplanned pregnancies. The availability of open adoption doubly challenges the path of “normal” reproduction. Not only is the child biologically unrelated to his or her parents of rearing, but birth-family members are also involved in his or her life in various ways. Families with open adoptions cannot pass as if they were two-parent biological families. The availability of open adoption as an alternative to the path of normal

Openness in Adoption 137 reproduction has been made possible by many advocates who have contested the practices of confidential adoptions and sealed records. Birth parents who felt cut off from their children and adopted persons who felt cut off from their histories have challenged adoption policies and practices through advocacy groups and lobbying efforts aimed at changing existing policies. Adoption: Rethinking “Family”

The movement toward openness in adoption has taken place within the context of broader societal changes in the US, including a changing concept of family. One of the most visible changes is that many children are growing up in situations in which they are called upon to conceptualize and manage membership in multiple families (e.g., Neil and Wrobel 2004). Family scholars are now being pushed to think more inclusively about the roles of the various adults who may be connected to children through biology and/or rearing. Since adoptive families are families by choice, they help us “con-

front fundamental questions about what factors other than blood ties make a group of people a family” (Fisher 2003: 337). In the absence of rigid norms about what constitutes a family, each family is “viewed as being in command of a set of practical understandings that they use ... to assign meanings to their relationships” (Garfinkel and Sacks 1970; cited in Holstein and Gubrium 1999: 15). This is happening with adoptive kinship networks involved in open adoption.

There is no template; through processes of everyday interaction, people are working out solutions about how best to constitute a close group that facilitates their ability to thrive. In the process, they are creating meaning within these new relationships. Three brief examples highlight how the movement toward open-

ness in adoption will require continued creativity in how families negotiate relationships. First, children adopted into the same family from different birth parents present new challenges to the sense of sibling equity in the family system when there is contact with only one child’s birth parent. Our research has revealed several adaptations that adoptive kinship networks make. Sometimes adoptive parents attempt to increase contact with one birth parent in order to bring it up to the level of the other child’s contact; sometimes they refuse overtures of additional contact when they feel it would make

their children’s contact experiences too unequal. Yet other times, one birth mother accepts responsibility for having contact with multiple siblings, even though only one is hers by birth (Berge, Green, Grotevant, and McRoy 2005).

138 Harold D. Grotevant Second, adoptive kinship network members must consider how to view their caregiving obligations toward their children’s birth parents or extended birth-family members in old age. In the case of international adoption, contact may make the economic disparity between the adopting family and the child’s birth family starkly visible. What kinds of social obligations might adoptive families feel toward their children’s birth relatives? What expectations might birth

relatives in more familistic or communal cultures hold about the obligations of the adopters of their children toward the child’s extended family? Do all parties to the adoption understand their responsibilities and connections in the same way? Third, adoptive kinship networks must figure out how to negotiate the multiple beginnings and endings of relationships over time, as members with novel and potentially ambiguous roles (such as spouses of birth parents, half siblings, and birth grandparents) enter and exit the network. Fortunately, these issues regarding novel roles and relationships are not unique to adoption. Much can be learned about these complexities from blended families following divorce (e.g., Coleman, Ganong, and Fine 2000), families engaging in the use of assisted reproductive technology (e.g., Shapiro, Shapiro, and Paret 2001), long-term foster care families (Schofield, Beek, Sargent,

and Thoburn 2000), gay and lesbian families of choice (Weston 1991), and others.

Conclusion This chapter has argued that adoption provides a useful vantage point

for understanding reproductive disruption. Although all adoption involves the legal transfer of parenting rights and responsibilities, we noted that there are four different “worlds” of adoption in the US: international adoptions, adoptions of children from foster care, relative adoptions, and domestic voluntary infant placements. Each type of adoption has distinctive cultural, social, and economic issues associated with it. The practice of adoption was also shown to reveal some of the complexities and paradoxes of race relations within the US and globally. The growing practice of openness in adoption was offered as a case study to illustrate how adoption reflects the changing definition of “family” in the US. Judith Modell (1997) has noted that adoption displays “the creativity of individuals in making kinship and in determining the behaviors that seal the bonds between them” (63—4). Reproductive disruptions such as adoption have much

Openness in Adoption 139 to teach us about the resilience and adaptability of human family systems.

Acknowledgments My appreciation is extended to the following funding agencies who have supported the Minnesota/Texas Adoption Research Project over its life course: National Institute of Child Health and Human Development, William T. Grant Foundation, National Science Foundation, Office of Population Affairs of the US Department of Health and Hu-

man Services, Hogg Foundation for Mental Health, John D. and Catherine T. MacArthur Foundation, Minnesota Agricultural Experiment Station, and University Research Institute of the University of Texas at Austin. We extend special thanks to the adoptive parents, adopted children, birth parents, and adoption agency staff members who generously gave their time to share their experiences

with us. Thanks also to Ruth McRoy, Yvette Perry, and Martha Rueter for helpful comments on an earlier draft of this chapter.

Notes 1. It should also be noted that a small yet growing number of African American children are being placed for adoption outside the US, in countries such as Canada (ABC News 2005). 2. Although contact would be impossible for children who were truly aban-

doned, it is likely that some children purportedly abandoned had birth parents who felt financially pressured into letting them be adopted or who misunderstood the permanent termination of parental rights entailed in legal adoption in the US (Briggs 2005). 3. The large number of children of color in the child welfare system has raised concerns about racial disparities in criteria used to make decisions about which children should be removed from their families and which families would most likely benefit from family reunification services (McRoy 2004).

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Part Il REPRODUCTION, GENDER, AND BIOPOLITICS LOCAL-GLOBAL INTERSECTIONS AND CONTESTATIONS

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Chapter 5

44 A

CAN GENDER “EQUITY” IN PRENATAL GENETIC SERVICES UNINTENTIONALLY

REINFORCE MALE AUTHORITY? C. H. Browner

Introduction D espite factonly that until both sexes arethat essential human procreation,the it was recently sexualtoand reproductive health research, programs, and policies focused overwhelmingly just on women. This is no longer the case. After conducting an analysis of the recent literature, Margaret E. Greene and Ann E. Biddlecom assure us that “[o]ne can no longer assert that men are missing from the literature.... [T]he past two decades show consistently about three female references to every male reference, with a very slow annual increase on men alone” (2000: 90). Still, insight remains limited, in large part because most work on the subject derives from a narrowly focused “problem-oriented” approach. For example, the many studies of “men’s role” in massive social issues such as the spread of HIV, rising rates of single motherhood, or pregnancy in adolescent women reduce their role to a single or small number of variables. As valuable as these contributions are for understanding the dynamics of particular social issues, the broader picture of men and reproduction remains woetully incomplete. In an effort to respond, Matthew C. Gutmann recently observed,

148 C. H. Browner “We need studies that concentrate on men and masculinities, on men as engendered and engendering beings ... because we know too little about men-as-men ...” (2003: 1, emphasis in original).

Such research would shed light on social dynamics far beyond the specific issues at hand. A broad focus on men and reproduction can illuminate the mechanisms at the core of “biopower,” that state of affairs where what is at stake is nothing less than the production and reproduction of life itself through the exercise of a power “that extends throughout the depths of consciousness and bodies of the population—and at the same time across the entirety of social relations” (Hardt and Negri 2000: 24). Research attention to men as gendered and engendering beings has begun to reveal the subject’s true complexity. Power emanates from multiple sources—gender politics, cultural ideologies, material factors, and institutional policies, to name some of the most obvious—each of which has its own momentum that may be mutually reinforcing or work at cross-purposes. To what extent, for example, should gender determine the selection of who runs and staffs programs in women’s reproductive health? Many such programs, particularly in the global South, are controlled by male policymakers, administrators, and providers who tend to privilege their own views over those of their largely female clientele (Greene 2000). Yet the opposite is just as problematic, as when women are the sole focus, and men’s needs in the areas of sexual and reproductive health are

subordinated or altogether ignored (Dudgeon and Inhorn 2004: 1381). Examples of this have been reported from parts of Mexico where some women uncritically privilege physician’s knowledge over their husband’s as well as their own (Lerner et al. 1994 as cited in Figueroa-Perea 2003: 117). Recent attempts to find more meaningiul ways to conceptualize reproductive health interventions have stemmed from two distinct conceptual orientations. One derives from the assumption that due

to pervasive and persistent gender-based differences in access to power and resources, women and men have fundamentally ditferent rights and responsibilities with regard to reproduction and reproductive health. “Interventions following from this framework ...

tend to focus on the reproductive health problems caused by men, along with approaches empowering women” (Dudgeon and Inhorn 2004: 1382 emphasis in original). The objectives within this framework are to advance reproductive health equity but not equality. Yet, as A. M. Basu observes, focusing on equity may undermine the progress it seeks to achieve if men are excluded from the very interven-

Gender “Equity” in Prenatal Genetic Services 149 tions in which their endorsement, if not participation, might be most

needed (1996). The second framework, typically called “Men as Partners,” explicitly recognizes both men’s contributions to women’s

reproductive health and men’s own needs, thereby prioritizing equality over equity. However, by seeking to reconcile what might be conflicting reproductive goals, this framework tends to downplay the potentially different sexual and reproductive strategies that may be pursued by men and women (Wegner, Landry, Wilkinson, and Tzanis 1998). In reality, both approaches are limited, for reasons Juan Guillermo Figueroa-Perea outlines in his eloquent plea for “gendered perspective” on reproductive health. He writes, “A more accurate analysis of men’s presence in reproductive health would situate them in specific heterogeneous contexts, so as to avoid single and simplistic readings of a process as complex as reproduction” (2003: 114). Doing so would involve analyzing the relational, social, and often antagonistic nature of human reproduction, in which tensions, conflicts, and disagreements between men and women exist within broader sociocultural and political environments, and reproductive activities and reproductive health are shaped—if not determined—by multiple actors playing multiple roles (Greene and Biddlecom 2000: 84, 88). Focusing on men’s participation in women’s health is an important first step, but in and of itself insufficient. Men need to be seen as actors in their own right, with sexuality, health, reproductive, and concrete material needs of their own. My objective in this chapter is to utilize Figueroa-Perea’s gendered

perspective to explicate aspects of the reproductive behavior of a group of pregnant Mexican-origin women living in Southern California and their male partners, and to show how such behavior is shaped by domestic politics and other broad social factors. The classic accounts of Mexican culture consistently described the “separate spheres” of social life, which gave women power and authority in the domestic domain, particularly in the areas of reproduction and family health and welfare (a pattern also not so different from the idealized European-American model). A newer US standard favoring husbands’ participation in domestic activities, including all aspects of women’s pregnancies, prenatal care, and parturition, is rather

alien to most working-class Mexicans who immigrate to the US. Neither gender can reach a consensus on the consequences of this change: some welcome it; others feel it has eroded their traditional sources of autonomy and power; and for others, it has meant some of both (Hongladareu-Sotelo 1994; Hirsch 2003).

150 C. H. Browner Prenatal Genetic Screening in the US The research was designed to determine what factors led a group of women of Mexican origin to accept or decline offers of amniocentesis to detect the possible presence of birth anomalies. The women

had all been classified as “high risk” for bearing a child with an anomaly because they had screened positive on a routine prenatal blood test (ACOG 1996). As with any type of medical screening, a positive result indicates only the possible presence of a problem, and diagnostic testing is needed to determine whether anything is in fact wrong with the pregnancy. For fetal diagnosis, the most commonly used diagnostic procedures are ultrasound and amniocentesis, up to

99 percent of which show the woman to be carrying a normal, healthy fetus (Alteneder et al. 1998). Some regard the practice of fetal diagnosis as inherently problematic because virtually all anomalies detected have no cure. In the event of a positive diagnosis, women are offered the option of abortion. When correctly performed, the blood tests and ultrasound carry virtually no iatrogenic risk; however, amniocentesis can cause a variety of minor medical complications, as well as miscarriage (Blatt 1988). And while any miscarriage or abortion can be a trau-

matic experience, abortion to avert the birth of a child with an anomaly may produce particular anguish because it is typically performed late in the second trimester of pregnancy and can require an overnight stay in the hospital. From its start, prenatal diagnosis evoked such intense controversy in some sectors as to lead even former Surgeon General C. Everett Koop to denounce the tests as “search and destroy” missions. Those who advocate its use as providing expectant parents with essential options take shelter from such criticism behind the ethical principle that parents should be free to opt for prenatal diagnosis and to use the information it provides as they see fit. This ethic of parental au-

tonomy and self-determination is institutionalized in the form of “non-directive” genetic counseling, in which the intended role of the medical professional is to provide information to help clients “understand their options and the present state of medical knowledge so they [themselves] can make informed decisions” (Fletcher and Wertz 1993). Genetics service providers are trained to avoid giving personal opinions when providing genetic counseling. If a client should ask, “What would you do in my situation?” a standard reply is, “Since I’m not you, what I would do is not important” (author’s field notes 1999).

Gender “Equity” in Prenatal Genetic Services 151 In California, a typical prenatal genetic consultation lasts thirty to forty-five minutes and is provided by a licensed genetic counselor with master’s-level training in genetics and counseling techniques. Whenever possible, prenatal counseling is offered to the couple as a unit. This is mainly because the genetic counselor must obtain detailed family medical histories from both parents to get an accurate picture of the “risk status” of the fetus, and many pregnant women know little about their husband’s family’s medical history. It is also

because although only the woman has the legal right to accept or decline fetal diagnosis, the conventional view among US prenatal care providers is that it should be the couple’s decision. This assumes,

of course, that “the couple” can and should be regarded as a unit, with common attitudes, interests, and goals. Yet there is ample evidence that, as in anything else, couples can differ in their views on prenatal diagnosis (Rapp 2000; Kolker and Burke 1994), reasons for seeking prenatal genetic counseling (Sorenson and Wertz 1986), attitudes about the potential difficulties of raising a child with disabilities (Beeson and Golbus 1985), and abortion for genetic reasons (Adler and Kushnick 1982; Pauker and Pauker 1987; Rothman 1986). In this regard, the role that genetic consultation may play in amniocentesis decisions is not well understood. In large part, there has been little research because the earliest users of fetal diagnosis were a self-selected group who actively sought testing so they might end the pregnancy if an anomaly were found. Increasingly routine use of blood screening and ultrasonography, however, has introduced amniocentesis to entirely new constituencies of women (and their partners) for whom the genetic consultation, in and of itself, might be more consequential. There is a small amount of evidence to support this view. M. Verjaal et al. (1982) found that genetic counselors played a greater role when the initial impetus for testing came from a physician or midwite rather than the woman herself, while C. Scholz et al. (1989) report that interaction with prenatal genetic counselors was instrumental when the couple disagreed or were undecided about

whether to have the test. These findings may have particular relevance for understanding the prenatal genetic counseling experiences and amniocentesis decisions of Mexican-origin women, particularly recent immigrants. Many have only a vague idea as to why they have been referred for a genetic consultation and what services may be offered (Hunt et al.

2005). Others know that an amniocentesis may be an option and may be fearful of the procedures’ known risks or have an exaggerated picture (Browner et al. 1999). Those who are better informed

152 C. H. Browner may be loathe to admit to themselves or anyone else that they are considering fetal diagnosis because of its link to abortion. I therefore hypothesized that genetic counselors would be more influential when the woman was ambivalent about whether to have the procedure and further, that when a genetic counselor sensed ambivalence from a woman, s/he allied herself with the male partner to gain consent—and that the resultant male empowerment could exacerbate domestic conflict related to the pregnancy and other issues.

Data for this chapter come from three sources: patient charts, face-to-face interviews, and systematic observations. Chart Sample

The 1996 charts of 379 Spanish-surnamed women at four Southern California genetics clinics who screened positive were abstracted for age, occupation, education, place of birth, religion, reproductive history (including any children born with a disability), previous amniocentesis experience, screening-test result (i.e., high, low), amniocentesis decision, whether any family member was born with a disability, and whether her male partner accompanied her to the genetic consultation. A process was developed for coding the data, and descriptive Statistics were calculated. Interview Sample

Semistructured face-to-face interviews lasting one hour to several hours were conducted with two waves of Mexican-origin women and their male partners who were offered amniocentesis because the women had screened positive: an opportunistically recruited pilot sample of 25 couples and a systematically recruited main sample of 128 couples (plus an additional 28 women without partners) (see Preloran, Browner, and Lieber 2001, for more on recruitment methods and sample selection). Interview results reported here are based on combining the responses from the pilot and main samples. The research design had specified that women and men be interviewed separately, but as this often proved impractical, 49 percent of the couples were interviewed together. Observational Sample

Systematic observations were conducted of the genetic consultations

of sixty-five Mexican-origin women referred for prenatal genetic counseling because they had screened positive. A paper-and-pencil instrument was designed to record data including information conveyed, questions asked, content, and effect of interaction among par-

Gender “Equity” in Prenatal Genetic Services 153 ticipants. Observational data were analyzed quantitatively and for content, with frequency counts made of the responses to the openended questions.

Genetic Screening and Gendered Ambivalence Study participants reported favorably on their prenatal genetic consultation—asked to rate their satisfaction on a 10 point scale, the

mean rating was 8.5. Only 12 percent of the women interviewed said they felt pressured by the counselor to accept amniocentesis, while 32 percent said they would have liked counselors to have been more directive or at least more explicit about their own opinions regarding the value of fetal diagnosis. At the same time, many participants felt uncomfortable with what they perceived to be the counselor’s implicit pressure that they consent to amniocentesis. Several said they would have preferred that the counselor had terminated the consultation the first time the woman declined the offer. Instead, counselors always continued until they had completed their protocols, typically asking several times more if the woman was sure she did not want the procedure. These findings are important because it was very common for the

women to say they had arrived at the genetic consultation undecided as to whether to have amniocentesis. Only 14 percent indicated they had made up their minds beforehand, while 72 percent said they had decided “on the spot.” Moreover, while there were few quantitative correlates of amniocentesis acceptance or refusal in either the chart or interview samples, there was a striking association in both samples between amniocentesis acceptance and the male

partner’s presence at the genetic consultation (y7=93.91; p=.000; Browner and Preloran 1999: 96). It was specifically the male partner’s presence and not that of other relatives or friends that was linked to amniocentesis acceptance. Women who attended the genetic consultation accompanied by others were no more likely to agree to amniocentesis than those who attended alone. The 51 percent of the sample’s male partners who did not attend the genetic consultation had a variety of reasons for their absence, the most common being the difficulty of getting or taking time off from work or being out of town for work-related reasons. Others needed to watch their other children, could not find parking, were afraid to leave their car unattended, were uncomfortable or nervous in hospitals, or lacked the patience to endure the long waits that clin-

154 C. H. Browner ical consultations typically entail. In some instances, women actively

discouraged their partners from attending because this gave the women more autonomy. In others, it was a combination of factors: attending was problematic for the man, and the woman did not encourage him to make a special effort because she preferred to attend alone. The powerlul link between male-partner presence and amniocentesis acceptance was unexpected, and the reasons for it are not obvious. It may have been that women attending with partners had

already made up their minds to have the procedure and wanted their partners present for moral or material support, while women who had already decided against the procedure had no motivation for their partners to attend. Yet I could find have no solid support for this scenario. Although some women who ultimately agreed to amniocentesis may have come to the genetics consultation “inclined”

toward that course of action, the data demonstrate that they had not yet made a firm decision, and their partner’s presence facilitated consent. Couple Who Easily Reached Consensus

Susana, 27, and Adrian, 25 (pseudonyms used throughout), grew up in working-class families in Jalisco, Mexico. Each had six years of primary education. She had been in the US for ten years prior to the interview, and he for four. They had a 3-year-old son with no known medical problems and no known history of birth anomalies in either family. This was her second pregnancy. They were interviewed together one evening in the living room of their small apartment. Susana said she was very upset when she learned of the positive screening test result and that she had cried and cried. She was par-

ticularly terrified that the baby would be born with Down Syndrome. Adrian said he was also worried—and confused. “How could this be?” he asked us. “I don’t take drugs. I don’t beat my wile. I was really frightened.” Susana asked Adrian to take time off from work so that he could

accompany her to the genetics consultation because “the husband should also know the risks.” He was receptive. “I went to give her support,” he told us. “It’s better for us to be together to decide.” Although Susana had previously read about amniocentesis, it was “something new” for Adrian. After a 35-minute meeting with a genetics counselor and an inconclusive high-resolution ultrasound, they agreed to the counselor’s recommendation of amniocentesis. They said it took them just “five minutes” to decide. “We accepted

Gender “Equity” in Prenatal Genetic Services 155 to get rid of the doubt” (para sacarse la espina), Adrian explained. “They told me they had to get to the bottom of it ... for the good of the baby.” Susana agreed. “[I wanted] to find out what I should expect—and to be calm [because] what affects me is going to affect the baby. I had to resolve my doubts” (Browner and Preloran 1999: 99), The systematic observations reveal that Susana and Adrian’s experience was not unique. Most others indicated that the genetic con-

sultation provided information, clarification, and justification for either course of action. Only 13 percent said that they learned “nothing new” from the consultation. For the most part, however, inter-

action between the couple and the genetic counselor was circumscribed, restrained, and generally at the counselor’s initiative. Nevertheless, fascinating gender differences could be observed, with the men consistently acting much more comfortable and less openly fearful than the women. Many women sat through the genetics consultation with tears in their eyes, their eyes averted, or their gazes fixed on the counselor. Men, on the other hand, appeared relaxed, confident, and in charge; often they sat back in their seats and generally spoke directly to the counselor. Some men came with a written set of questions, while others took notes throughout

the session, behaviors never observed in women. While in some couples, this pattern can be attributed to the man’s greater English fluency, this was not always the situation. Some men’s English was

quite limited, but this did not deter their efforts, and in other instances, wives spoke the language better than their husbands yet were unwilling to assert their superior knowledge during the genetic consultation. Men and women also sought answers to different types of questions: women tended to express more “embodied” concerns (e.g., how painful is amniocentesis, how likely is a hemorrhage) while men’s were more abstract (e.g., how are chromosomes counted or their condition assessed, what is the statistical risk of miscarriage) or even peripheral (e.g., how new are the computers, What kind of training is needed to run them). While observing men, it was revealed that they tended to take on the role of advocate or intermediary. Some repeated what the counselor said to their wives, seemingly seeking to allay the women’s fears, like Juan, who explained to Lisa, “Now, you see! [The counselor] says [amniocentesis] hurts even less than a tooth extraction!” Others, like Rogelio, intervened to voice what they believed were their partners’ concerns: “I know she wants to do [the amniocentesis],” he told the counselor in a confidential tone, “but she’s afraid.” Men who attended the genetics consultation seemed to serve as a

156 C. H. Browner bridge between the world of medicine and their wives, helping to control and to “contain” the women’s fears (cf. Foehrenbach and Lane 1990). As Roberto explained, “I went to the genetics consulta-

tion to help her. And to know. Because he who does not know is like he who does not see.” When asked whether helping his wite to “see” could have influenced her decision, he replied, “Of course. I told her that she couldn’t be swayed by what she hears on the streets, that she had to see the truth of science.” When asked the direct question, “Whose opinion counted most in the amniocentesis decision?” 52 percent of the women said their own,

and 50 percent of the men agreed; only 13 and 14 percent, respectively, attributed the decision to the man, while less than a quarter of each gender characterized it as a joint decision. When asked to further describe her partner’s role in the woman’s decision, whether she opted for or against the procedure, apoyar (to provide support) was the term most commonly employed. In one woman’s words, “just knowing he’s there makes me more comfortable and relaxed.” Clinicians in the study tended to agree with this assessment, preferring the male partner present because they allayed the women’s anxieties and helped them reach more reasoned decisions. But their experience has also taught them that women who bring their partners are less apt to postpone deciding and less likely to turn down the procedure. Of course, not every woman in the study welcomed her partner’s participation, and some insisted on attending alone so they could decide without interference. One such example was Ana Lucia. When asked who decided about amniocentesis, she replied, “Me, alone.... Jorge wanted us to have the baby no matter what, but I know I can’t count on him....He hasn’t even found work [and] all he does is drink.... I thought it would be better not to have the baby if it was going to be born with problems.” Rocio’s domestic situation was similar. But unlike Ana Lucia, Rocio was deeply fearful about the prospect of raising a child with an

anomaly and deeply ambivalent about aborting her current pregnancy. I use this case to illustrate my main point that when a genetic counselor sensed a woman’s ambivalence about amniocentesis, she

sought to form an alliance with the male partner, an alliance that could exacerbate preexisting conflicts within the couple. Woman with Profound Ambivalence

At forty-five, Rocio already had four grown children, two of whom had serious medical problems that likely had a genetic or develop-

Gender “Equity” in Prenatal Genetic Services 157 mental source. Her relationship with Alberto, her current partner, was neither smooth nor supportive, and she had aborted her previous pregnancy because of her doubts (although she told Alberto she had miscarried). Rocio considered Alberto a poor provider and felt he resented her family’s many serious medical problems. Although Alberto was forty-two, he had no biological children and was thrilled by the prospect of becoming a father. Rocio told us she had invited Alberto to the genetic consultation because she needed transportation and because she expected to be

offered an ultrasound and wanted Alberto to view the fetus. She also said she expected the genetic consultation to be similar to her regular prenatal visits, which were warmly personal, private, in Spanish, and quite brief. Although Alberto often drove her to these visits, he would wait outside. He similarly dropped her off at the genetics clinic and began what would be a protracted search for parking, and

once arriving would find the genetics consultation already underway. In addition to Kelly, an English-speaking genetic counselor, was

Ana, a clerk enlisted to translate for Rocio, who understood a fair amount of English but was uncomfortable speaking it. Rocio appeared tired and stressed. She found it painful to tell the intake assistant about her own family’s medical history and her fears about her current pregnancy. She also told the assistant that the un-

certainty she had felt since learning she screened positive was “making her crazy” and she welcomed the promised reassurance of amniocentesis. In Alberto’s presence, the genetic counselor asked Rocio to again recount her family’s medical history, unaware of the couple’s longstanding, bitter conflicts on the subject. She seemed openly skeptical with the explanations Rocio offered for her children’s medical problems and said, “I think it would be better if you had an amniocentesis because I’m just not sure about your daughter’s illness, and I don’t have your nephew’s [medical] records. I can’t tell if they had something similar. It could be something genetic.”

Frowning in disagreement, Rocio murmured she was sure her younger daughter’s chronic mental illness was caused by an iron injection administered in infancy by a Mexican physician. Rather than responding directly to Rocio, Kelly turned to explain to Alberto that the couple would be “having the pleasure of christening” the clinic’s brand new ultrasound machine. The two continued talking animatedly in English about the wonders of technology and the importance of fetal diagnosis for the couple, effectively excluding Rocio from their conversation.

158 C. H. Browner Casually, Kelly next asked Alberto whether there were any medical problems in his family. “Everyone is very, very fine, super fine, 100 percent!” he responded. “My little sister died when she was two, but she was healthy. My father died when he chose to die.” “Good, good. Congratulations,” Kelly said, then adding, “You know that the ultrasound is not 100 percent ... because if the baby for example has his little hand in a fist, one can’t know if he has [all] his little fingers.” When Rocio shook her head as if to decline additional testing, Alberto quickly intervened. “Of course it is better to have [the amniocentesis]. You wanted it, didn’t you?” For a moment Rocio was silent but then replied, “There’ll be no need if the ultrasound comes out fine. And even if they tell me that the baby is abnormal, I’m not going to abort it.” Alberto tried again. “This has nothing to do with [abortion]. It’s only for knowing.” The ultrasound proved inconclusive (which occurs approximately 50 percent of the time when the woman has screened positive), and Rocio continued to voice her doubts and fears about amniocentesis:

that it would be very painful, might provoke a miscarriage, and would prevent her from fulfilling her domestic responsibilities for several days alter. Separately and in unison, Kelly and Alberto sought to assuage her fears, but Alberto soon grew impatient. “If you want to do it, you should decide right now!” Speaking directly to Ana, the clerk-translator, Rocio said she would prefer to wait for another day. “Fine,” said Ana. “When?” “But he wants me to do it today,” Rocio replied. “And what do you want?” Ana asked. After a short silence, Kelly bluntly asked again whether Rocio wanted the test. Softly she answered, “Yes” (Browner and Preloran 2004: 390-6, passim).

The Complexities of Gendered Decision-Making My research objective had been to determine how conjugal dynamics,

and gender politics more broadly, shaped one aspect of the reproductive behavior of a group of California-resident Mexican-origin women: the decision to undergo amniocentesis to prenatally detect birth anomalies. I had hypothesized that the male partner’s wishes would prevail in the women’s amniocentesis decisions, particularly among “less acculturated” study participants. Health care providers who work with this population attribute their proportionally higher rates of amniocentesis refusal to the fact that the men refuse to allow the women to be tested (Cunningham and Tompkinson 1999).

Gender “Equity” in Prenatal Genetic Services 159 In fact, many Mexican-origin women tell providers that this is why they are declining the test. In fact, it was just the opposite. The majority of both genders said that the amniocentesis decision had been the woman’s, and—even more surprising—among those who said they deferred to their partner’s wishes, women who agreed to amniocentesis outnumbered those who refused by three to one. This finding is consistent with dynamics observed during the genetic consultations. Many factors contributed to this unexpected pattern, ranging from wanting to appear more sophisticated and attuned to the technologies associated with modern medicine, to their greater ambivalence about raising a child with severe anomalies. Taken together, they meant that male partners were the stronger—or at least less ambivalent—advocates for fetal diagnosis, simultaneously manifesting more interest in, and greater comfort with, this and other technological aspects of medical care. These results are consistent with Ann K. Blanc’s observation that “[m]en appear to be especially enthusiastic about and receptive to information that expands their knowledge of reproductive and sexual health” (2001: 200). In some cases, men’s greater English fluency likely contributed to the dynamics observed, because most of the genetic counselors spoke little if any Spanish. Yet the men served important functions beyond language-brokering. They gave the women, who were attracted to amniocentesis’s promise of reassurance but fearful of its risks and stigma, the courage to overcome their fears. And through the rapport they established with the counselor and their endorsement of her clinical agenda, they validated the very enterprise of prenatal genetic counseling and fetal diagnosis.

Because studies of prenatal testing have generally focused on women, we know little about how the tests may affect the larger conjugal unit or men’s experience of their wives’ pregnancies. Similarly

limited are data on men’s values, attitudes, and needs concerning prenatal testing. The findings reported here are interestingly complex. They show substantial concordance in women’s and men’s accounts of their amniocentesis decision processes, in couples inter-

viewed both together and separately. Still, men tended to inflate their own role in the decision process: they were more likely than the women to describe the decision as either joint or as their own. Also surprising was the pattern that partners of women refusing amniocentesis were more likely than the women themselves to say

that the couple had decided together; in contrast, the partners of women accepting amniocentesis were more likely than their wives

160 C. H. Browner to say that the women had decided on their own (none of these differences reached statistical significance). These findings demonstrate that simple assumptions about interactions among power, gender, and reproduction will inevitably fall far from the mark. Even when couples characterized their amniocentesis decision as “joint,” it was generally still the women’s wishes that prevailed. Male and female study participants offered similar reasons for this (Markens, Browner, and Preloran 2003). Most said that they thought the woman should have the final word because it was her body on

which the procedure would be performed or because her greater knowledge and/or previous reproductive experiences made her more qualified to decide. Although many of the male partners were actively involved in the women’s pregnancies (e.g., attending pre-

natal consultations and participating when she gave birth), both women and men regarded the male role as that of supportive helper rather than equal partner. This view of men “supporting” rather than controlling women’s reproductive activities seems at first glance to depart from traditional Mexican culture, which legitimizes male dominance in all aspects of social life. However, it is consistent with the “separate spheres” model of gender organization, in which women are responsible for family-

related matters and men for economically maintaining the family. Study participants frequently saw their own families in this light, describing women’s economically remunerative activities and men’s domestic activities as supplemental, regardless of their actual extent. The male partner’s role in these women’s amniocentesis decisions similarly seems construed as to facilitate whichever decision the woman herself chose to make.

Reinforcing Male Authority? My argument that clinicians forged alliances with male partners when they felt female uncertainty or ambivalence should not be taken to mean I think that the clinicians were consciously seeking to reinforce male authority or power within either particular family units or in the larger society. Instances in which genetic counselors

allied themselves with female relatives or friends were also observed. It’s fair to conclude that clinicians’ only agenda was to en-

courage the women to do what they felt was in everyone’s best interests, an amniocentesis, but in their efforts to achieve this narrow clinical goal, they sometimes inadvertently accomplished more.

Gender “Equity” in Prenatal Genetic Services 161 These results on the unexpected way in which alliances between male clients and women’s health service providers can sometimes undermine women’s autonomy were serendipitous. Yet they are not unique. Lea Pickard’s fascinating work on reproduction and reproductive health care among a group of K’iche’ living in the Western Guatemalan highlands similarly describes a paradoxical consequence of incorporating male partners into women’s reproductive health policies and programs (2003). She found that some women were attracted to biomedical prenatal care because it pushed their partners

toward becoming more involved fathers, but male involvement came at a price, as they found themselves forced to sacrifice some of the autonomy they had had in the more traditional female-centered system. Pickard concludes that given that the gender system in the

community where she worked—as much as in anywhere else—is intimately tied to other systems of power, women’s decisions to seek

biomedical care and to involve their male partners may unintentionally reinforce those as well as other structural inequalities. Sarah White wrote that as men are given equal or center stage in development or other types of social change efforts, those entities will necessarily be transformed, and constant vigilance will be required to avoid reproducing the reality that we are seeking to transcend. She cautions that “[t]his suggests the need for much greater reflection on the part ... institutions play in constituting gender and other forms of social difference. They are not neutral observers, but actively involved in the production of authoritative discourses and the differential distribution of resources” (2000: 39).

Conclusions Historically, women have born the blame for all reproductive “disruptions,” both at home, as when a couple experienced infertility, pregnancy loss, or childhood disability, and in larger contexts, as when a group failed to achieve its demographic goals or met other reproductive calamities. That traditional sexist stereotype has diminished somewhat over recent years as men’s role in the biological and social patterning of reproductive activities has become better understood, a trend that should continue as men become an increasingly important focus of sexual and reproductive health research, policies, and programs, including those for the delivery of prenatal genetic services. Yet, as with any social change, such transformational

processes are proceeding along an uneven course, and instead of

162 C. H. Browner simply solving the problems they were designed to correct, they are revealing new complexities demanding further study and thought. This chapter has shown how focusing on men and micropolitics of gender relations within the domain of human reproductive behavior can illuminate some of the hidden mechanisms through which bio-

power and male authority can be mutually reinforcing—and not necessarily toward an undesirable outcome. Our case-study structure enabled us to situate each actor within an interactional arena motivated by each specific and unique agenda, a manifestation of diverse tensions and interactions among gender politics, cultural ideologies, material factors, and more. It showed that resulting alliances might be only temporary and often not predictable in advance. This

chapter further demonstrates that any framework failing to take fully into account not just male partners’ presence but the relational and often antagonistic nature of human reproduction, as well as the larger sociocultural, political, and economic environments shaping it at any particular place and time, may provide only a partial understanding of the enormously complex issues at play.

Acknowledgements Research support was generously provided by the NIH Center for Human Genome Research (1RO1 HD31618 and HGO1384), the Russell Sage Foundation, UC-MEXUS, and the UCLA Center for the Study of Women and Center for Culture and Health. A draft of this chapter appeared as a working paper in Women in International Development Working Paper. An early version was presented at the 2004 Meeting

of the Latin American Studies Association in Las Vegas, Nevada, in a symposium on “Sexuality, Equality, and Reproductive Health: The Case of Mexico,” K. E. Bliss and M. C. Gutmann, organizers. Dr. H. Mabel Preloran has been a constant source of inspiration and wisdom, patience, and perspective throughout our many years of collaboration. As with each of our endeavors, this project would have been grossly impoverished without her.

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33-41.

Chapter 6

WHEN THE PERSONAL IS POLITICAL: CONTESTED REPRODUCTIVE STRATEGIES

AMONG WEST AFRICAN MIGRANTS IN FRANCE Carolyn Sargent

Introduction To now-substantial and important anthropological literature on reproduction vividlyscholarly documents the potential that such studies hold for identifying the broader social forces shaping reproductive options, interests, and strategies of women and men (Browner and Sargent 2005; Ginsburg and Rapp 1995). Among the themes generated in this body of research is the following question: what do the politically and emotionally charged contestations that take place in the reproductive experiences of women and men around

the world tell us about structure, culture, and power in everyday life (Jenkins and Inhorn 2003: 1831)? How do men’s and women’s reproductive decisions coincide or diverge? In the context of transnational migration, such issues as the tensions between reproductive agency and structural constraints challenge anthropologists to identify the complex intersections among the personal, the state, and the global.

166 Carolyn Sargent Longitudinal research on migrants from the Senegal River Valley in West Africa, now residing in Paris, France, offers a powerful example of the politics of reproduction played out at the juncture between the local and the global. Grounded ethnographic research on the “reproductive disruptions” West African migrants confront, generated by immigration legislation, population policies, and biomedical ideologies, shows how individuals assert agency in this matrix of structural constraints. Migration from West Africa to France accelerated following the end of the colonial period and the creation of nation-states in the region during the 1960s. Initially, African migrants, as former colonial subjects, were exempt from the 1945 legislation that set conditions for obtaining nationality and for entry and residence of foreigners. However, subsequent to termination of an “open door” labor migration policy in 1974, successive governments have applied increasingly restrictive immigration regulations to West African migrant

populations (Quiminal and Timera 2002: 19). Migrants from the Senegal River Valley, including those from Mali, have faced frequent

modifications in regulations concerning work permits and longterm residence authorization, unemployment, housing shortages, and growing public hostility, especially from those favoring zeroimmigration. The riots erupting in the fall of 2005, in numerous French cities and involving North and West African immigrants led to a national state of emergency, declared by Prime Minister Dominique Villepin on 8 November. These riots pointed to “the failure of the French model” of immigrant integration (Le Monde 2005). Increasingly restrictive and punitive immigration policies have posed daunting challenges, particularly for Muslim migrants of North and sub-Saharan origin such as those from Mali. Byzantine bureaucratic regulations, visa application procedures, access to housing, work permits, and health and social welfare benefits all represent hurdles for a population largely unskilled and with little formal education. Marriage itself, rather than constituting a stable structure in a shifting environment, is often problematized by the myriad regulations concerning legal marital unions and immigration status.

In the 2002 French elections, right-wing politician Jean-Marie LePen’s National Front party received unprecedented support. The campaign debate underscored that immigration policy and such issues as health and social security benefits for migrants represent highly charged themes. Globalization, in particular the flow of immigrants between former French colonies in Africa and France since

When the Personal ts Political 167 the 1960s, brought to the forefront of political discourse the multifaceted implications of this migrant influx and its repercussions in the current global economy. The platform of the National Front, although especially extremist, raised issues of widespread public concern to the general public in France, regardless of political orientation. These issues include un-

documented workers, many of whom are West African and who compete for scarce jobs, an increasingly visible and politicized Muslim population (Timera 1996), and a perceived demographic crisis.

Because of historical concerns in France surrounding population decline and associated pronatalist policies dating to the World War I period, fertility has long been a dominant theme in French political rhetoric. In 2004, the National Front family policy statement referred to the “winter of French demography” and lamented the “deficit” in truly “French” births (“population francaise de souche”), in contrast to the high fertility of non-European immigrants, especially those from North and sub-Saharan Africa. Less polemically, the government agency INSEE (Institut National de Statistique et Etudes Economiques), in a report on immigrant fertility, stated that sub-Saharan Africans had the highest fertility among foreigners living in France in 1999, with an estimated 4.72 children per woman, in contrast to 1.72 children born to mothers with French nationality (Legros 2003). Politicians, in spite of the longstanding state pronatalism, have been critical of high fertility among African (especially Muslim) migrants and its costs to the state. Thus, in conjunction with the destabilizing of marital unions related to immigration legislation prohibiting polygamy, immigrant childbearing has also become a contentious political issue. According to the 1999 census, approximately 80,000 West African migrants, largely from the region encompassing Mali, Mauritania, and Senegal, legally resided in France. This estimate does not include children born in France to these migrants nor those present without legal authorization (Juillard 2003; Lanly 1998; INSEE 2004). In contrast, estimates from the Ministry of the Interior approximate

the Malian population in France alone at 120,000, two-thirds of whom are undocumented (Le Monde 2003). The significant discrepancies in population estimates may result from the omission of undocumented migrants as well as those living in substandard housing (“squats”), whose residents are not enumerated in the census. Attention to national and ethnic origin may also be minimized in response to the state emphasis on “republicanism” that discourages identification of national origin, ethnicity, or religion.'

168 Carolyn Sargent Between 1990 and 1999, a significant population of migrants originating in sub-Saharan Africa arrived in the greater Paris region, Ile-de-France. The percentage of Malians, for example, increased by 21.2 percent, while the Senegalese population increased by 28.3 percent (INSEE 2004). This influx consisted primarily of women, ad-

mitted into the country as part of the family reunification policy, although the West African migrant population continues to consist primarily of male migrant laborers. The Senegal River Valley (Senegal, Mali, Mauritania) constitutes the principle region of emigration to Paris from sub-Saharan Africa; of this population, the Soninke represent the dominant ethnic group (Juillard 2003). Correspondingly, most of the participants in this research are Soninke speakers from Mali, with some from Senegal and Mauritania, and a minority of other ethnicities. The majority of the

samples of men and women, paralleling the characteristics of the migrant flow, are from rural regions such as Kayes, and almost all are Muslim. Between 1998 and 2005, I explored how political discourse concerning immigration, in conjunction with health and social welfare policies, have shaped the lives of individual migrants from the Senegal River Valley. I have tried to situate individual and family expe-

riences in the broader context of state and global processes. These include global-health objectives such as safe motherhood, child immunizations, and adequate housing, which are also contested issues in the politics of immigrant health as negotiated at the state and community levels in France. A primary goal of this research was to determine how national and global structures and dynamics constrain choices locally and how migrants may retain agency in a highly hierarchical system such as biomedicine. I am interested in how the personal, state, and global articulate in shaping reproductive strategies (as well as other health decisions). These strategies are often contested among couples, their extended families in France and in West Africa, social work-

ers, and medical professionals. Public-health and other government policies may provoke conflict, especially on controversial topics such as fertility. In the wake of the fall 2005 immigrant riots, politicians and journalists speculated that the uprisings in immigrant suburbs might in fact be the product of polygamous marriages which produce numerous children; these large families are housed inadequately, leading to adolescent unrest and militant demonstrations. The political discourse on “excessive (immigrant) childbearing” thus has been extended to analyses of the underlying determinants of the riots.

When the Personal ts Political 169 Exploring “Disrupted” Migrant Reproduction The concept of “disrupted reproduction,” in which the customary lin-

ear narratives of conception and birth are in some way interrupted (Jenkins and Inhorn 2003: 1831) aptly describes the discourse and practices surrounding reproduction among the West African migrant population. Following earlier studies by Browner (2000, 1996) and Ginsburg and Rapp (1995), Iam particularly concerned in this chapter with how reproductive decisions, especially the use of contraception, may be contested between spouses, among co-wives in polygamous marriages, between the migrant and biomedical communities (including the ubiquitous social workers), and between migrants and their communities of origin. In addition, immigrant reproduction is clearly a contested political issue debated in diverse contexts, including the public-hospital system and among religious authorities. Most of the Malian and other Senegal River Valley migrants are Muslim (Diouf 2002). For this reason, and because of the widespread public discourse on Islam in France, I explored women’s and men’s perspectives on the connections between religious doctrine and re-

productive health, especially contraceptive use. Interpretations of Islamic guidelines on family planning are often prioritized in contraceptive decision-making among migrants. Women’s and men’s reproductive strategies are therefore shaped by multilayered religious, political, and economic structures, as well as by personal interests. The decision as to whether to use contraception exemplifies individual accommodation and resistance to complex

institutional and familial constraints. Terms such as “accommodation,” “resistance,” “agency,” and “empowerment” have been widely employed in anthropological writings (Boddy 1994; Davis-Floyd and Sargent 1997; Ginsburg and Rapp 1995; Moore 1988; Ortner 2001; Roseberry 1988; Scheper-Hughes 1992). It is critical, however, to examine, rather than to assume, what agency and empowerment mean to men and women, in practice. I intend for this empirically grounded research to convey not merely what French biomedicine, social workers, or NGOs mean by these concepts but how they are constructed and play out in the everyday lives of Malian migrants. Between 1998 and 2003, I interviewed 176 women of reproductive age at diverse research sites including two public hospitals, a public family-planning center, and six maternal- and child-health clinics. I administered structured interviews to women attending prenatal or gynecology consultations, women hospitalized in the high-risk preg-

170 Carolyn Sargent nancy unit or in the postpartum ward, and mothers consulting at the maternal and child health centers. The interviews elicited demographic data, reproductive histories, narratives on contraceptive use, immigration and employment information, and perspectives on religious doctrine regarding contraception, childbearing, and women’s autonomy. With some overlap in questions, different interview schedules were administered to two samples of women. In 2001 and 2002, 98 women were interviewed in a follow-up study to clarify results

obtained from 78 women in prior surveys, administered between 1998 and 2000.’ The supplemental questions in the second survey focused on the details of contraceptive use and women’s natratives concerning past experience with family planning. To obtain male perspectives, 45 men were interviewed in focus groups consisting of four to six migrants residing in the nine worker hostels. The logistics of the worker hostels, which are extremely over-

crowded (for example, one officially has 200 beds but is housing 600 men), and recommendations from hostel leadership led to the decision to rely on focus groups rather than individual interviews (for reasons of anonymity). Two issues were raised with each focus group: the pros and cons of bringing one’s wife to live in France in relation to French concepts of autonomy for women; and interpretations of Islam with regard to contraception, childbearing, and childrearing.

In research conducted in 2001, a surprising 70 percent of the sample of women participating in the study said that they had used contraception, primarily the birth-control pill. Approximately 60 percent of these women said they did so in spite of their husbands’ opposition. This rate of contraceptive use is striking in contrast to that in Mali, where the use of contraceptives remains low, under 8 percent. Recent estimates, gathered from the last national survey, suggest that approximately 6 percent of Malian women in rural areas and as many as 19 percent in the capital were using a biomedical contraceptive method in the last national survey (Ballo et al. 2002: 6).

Accordingly, to validate and to better understand the high use of the Pill among migrants in Paris, I conducted additional interviews among 98 women to acquire more detail on their contraceptive histories. For example, the response “Yes, I have taken the Pill” would be followed by questions such as: Was the Pill taken daily? How often were pills missed? For those taking the low-estrogen pill, were the pills taken at the same time daily? And what were the reasons for stopping the use of the contraceptive in question? I also tried to

When the Personal ts Political 171 determine whether women felt anyone had pressured them to use contraception. Contraceptive use among migrants is linked to state and public-hospital policies requiring the dissemination of information on family planning to all postpartum women. Midwives form the core of the public-hospital maternity system and provide prenatal care, delivery supervision, and postpartum care for most pregnancies. Theoretically, the routine regimen for postpartum women includes discussion of family planning.

Biomedical/Political Discourse Based on my experiences shadowing midwives in prenatal clinics and postpartum wards, I heard many spontaneous staff comments on the excessive fertility of African/Muslim women and how beneficial contraception would be for them. However, the actual presentation of information on contraceptive methods was erratic, often indifferent to the presence of men in the room, and presented in French regardless of the client’s language competence. Indeed, most interactions with postpartum women involved midwives, nurses, and other hospital officials (for example, the birth registry director) speaking French with no evident effort to ascertain whether they were understood. For those midwives who are aware and concerned that a woman speaks limited or no French, an interpreter is (in principle) on call. However, midwives who stated they rarely call an interpreter because she is unlikely to be available immediately said they are able

to use gestures and pantomime effectively to convey the desired message. Several midwives said that in fact they never met women who did not speak French. This is demonstrably incorrect. As the interpreter of West African languages at one hospital observed, the

majority of women from the Senegal River Valley do not speak French, but they are polite and respectful and know enough to say “oui” (yes) to questions. This, of course, does not mean that they com-

prehend nuanced discussions concerning the advantages of contraception and which methods might be appropriate for them. An older, more senior group of midwives reaching retirement age and highly critical of current hospital policies described a widespread anti-immigrant philosophy among nurses, doctors, and many midwives which plays out in strong recommendations for use of contraception or handing out prescriptions for the Pill without explanation, in a stack of prescriptions at discharge. These midwives argue that

172 Carolyn Sargent the intent implicit in these practices is to limit the reproduction of the African immigrant population.’ There certainly is evidence to support the contention by the “old team” of midwives that an implicit hospital philosophy opposes immigrant births and strongly encourages contraception. Although I could find no formal documentation addressing contraception for migrants in comparison with women of presumed “French” origin, discussion among nurse managers, nurses, midwives, and doctors reinforced the contention that state pronatalist policies were intended to address perceived problems of low “French” population growth and were not meant to apply to African immigrants with high fertility. Nonetheless, I saw considerable variability in how contra-

ception was introduced as a topic and how midwives framed their presentation. The fact that the use of interpreters was irregular, in spite of the obvious limitations of communicating with a patient who does not speak French, has obvious implications for the provision of familyplanning information. The majority of young midwives, graduates of midwifery schools within the last five years, said unequivocally that they had no need for an interpreter, even for the discussion of a complex issue. Their reasons ranged from the misinformed notion already noted, that “everyone” speaks French, to the suggestion that interpreters interfere with potential rapport between patients and midwives. In general, even those midwives who value interpreters complained about the difficulties involved in contacting the one interpreter who speaks several African languages, and the lengthy interval between the request for the interpreter and her arrival. Some preferred not to use an interpreter, claiming that interpreters take too much time to translate, while others complained of the reverse, that interpreters fail to translate fully and accurately. Based on my own observations, I concluded that the two interpreters of African languages (as well as several interpreters of nonAfrican languages) often had their own agendas for translation, regardless of the precise language used by the midwife. One interpreter described how she developed a personal routine for discussing contraception, based on her sense of how migrants should adapt to life in Europe. Asked how she responds when a midwife calls her to translate on the subject of birth control, she described how she tells the postpartum woman, and her husband if he is present, that Paris is not “the village”: there is no extended family to help with children. Women need to rest, space their children, avoid anemia, and consider the problem of insufficient rooms to house numerous children. She

When the Personal ts Political 173 said she usually concludes by saying, “So take the Pill.” On several occasions, I heard her directly contradict the midwife (in French, telling

the midwife that her instructions were too complex or not necessary). She added that if she isn’t available for translation, the prescrip-

tion for the Pill may be added to the stack of prescriptions a woman receives at discharge, without explanation. Although this practice disturbed her, she had not protested because she felt it was unlikely her opinion would be influential. The African languages interpreter at the other public hospital at which I interviewed said she is “occasionally” called to discuss contraception. She also has developed a routine for introducing the subject

of contraception on her own, independent of the midwife’s commentary. She initiates the issue by saying to the woman or couple, “We are not au pays [in our home country] now; we are in France, and we need to live in these new conditions.” This means not having another baby soon. If the woman says, “Ask my husband,” she replies, “Why? You are the woman who will get pregnant and suffer, not him.” Thus, interpreters have their own protocols regarding contraception. As one interpreter said, “I can give all the advice myself [that the midwives do], all I need is the degree.” Moreover, they may see themselves as representing the requirements of “modernity” to a less educated and more “traditional” population of women who

need to become more independent and assertive and have fewer children.

During the multiple phases of this research, I repeatedly tried to determine whether there was a uniform intervention employed to present contraception as an option to West African women and what might represent a powertul approach from the perspective of the midwives. The theme of “resting your uterus” proved to be a frequent line of argument from midwives, interpreters, and nurses in discussions of contraception. One nurse with longtime experience in clinics across Paris noted that a common approach to encouraging women

to take the Pill is to state, “Take it for three to six months for your uterus, to shrink it, to rest it.” Because Islam mandates a forty-day abstinence period following childbirth, the suggestion of “resting the uterus” may resonate with this population. For a minority of the midwives observed as part of this research, encouragement of contraception appears linked to a concern for women’s levels of fatigue, the need for child spacing to ensure the well-being of the children, and an appreciation of the difficulties of raising numerous children on small incomes in inadequate lodging. In contrast are those practitioners whose rhetoric is much more crit-

174 Carolyn Sargent ical of high fertility among African women, echoing the National Front’s anti-immigrant platform, with remarks about irresponsibility and traditionalism.*

Essentializing about the diverse ethnic populations targeted by the public-hospital system was the norm in conversations with many hospital personnel. In this regard, biomedical practitioners’ assessments resonate with political discourse and the realities of everyday life for many West Africans. As Catherine Quiminal and Mahamet Timera (2002) describe in detail, it is not difficult to detect evidence of racism across multiple institutions in France—housing, employment, education, and immigration regulations. The public-hospital and social welfare systems are by no means immune from these same political currents.

Islam and Contraception In analyzing biomedical perspectives on contraceptive use by African women and the strategies of migrant women themselves, it became clear that Islam plays a central role in reproductive decisions. Some hospital practitioners are not aware that their Malian patients are probably Muslim, associating Islam with the North African immigrant population. However, for those who are aware, the turbulent national debate concerning the politicizing of Islam and the perceived

correlation between Islam and terrorism may shape interactions with Muslim women. The strong secular, humanist, and anticlerical tradition in France also influences how midwives and others respond to religious issues that may affect reproductive decisions (Quiminal and Timera 2002: 28). With the exception of one junior midwife who expressed an interest in learning more about the culture and religious beliefs of her patients, midwives and nurses displayed little knowledge of Islam or its potential relevance to health care, although the hospitals’ target populations are largely Muslim. In discussions about their Muslim

clients, midwives and nurses were most familiar with the notion that Islam mandates a forty-day interval following childbirth, during which sexual relations are prohibited. Some midwives also were curious about whether the women were in polygamous marriages, which they associated with Islam. Occasionally a woman’s modesty and reluctance to be examined by a male physician was attributed

to religion. But few midwives had any awareness of the religious controversy surrounding contraception and were unaware of the

When the Personal ts Political 175 widespread marital conflicts and debate in the broader Muslim communities on this topic. Malians and other women from the Senegal River Valley, on the other hand, expressed firm views on religion and its consequences

for family planning. When I asked women what Islam had to say about contraception, the dominant view was that Islam opposes its use. In fact, theological texts and Muslim jurists in the Middle East and Africa demonstrate variability regarding birth control; over one thousand years of jurisprudence addresses this issue (Omran 1992; Musallam 1983). Omran (1992), for example, cites recent legal opinions by Islamic theologians that allow contraception, whether unequivocally or under limited conditions. In contrast, I found that some authorities, such as the Imam of the Mosque of Paris, strongly opposed family planning as a policy while allowing for the possibility of unique cases where contraception would be permissible (for instance, in the short term, if the mother’s health were frail). In conversations with leaders of neighborhood mosques in Paris, diverse opinions were expressed, including vigorous support based on the argument that “the Prophet himself used it” (local mosque officials, June 2000). From the perspective of those not in positions of religious leadership, convictions varied from premises of permissibility to unconditional opposition, on religious grounds. A minority of the women I interviewed said that God is tolerant and would accept women’s need to space children or that in the time of the Prophet, a form of contraception was allowed. Following this logic, they concluded to their own satistfaction that the Pill was also acceptable in the modern world.

I found a significant difference of opinion between men and women on this issue. Although approximately 70 percent of the women in both sets of surveys had used a contraceptive method, almost half of the sample said their husbands did not approve, that it was none of their business, or that they didn’t know about it. Specifically, almost halt of those whose husbands disapproved of using contraceptives were currently using contraception anyway, often in secret.

Men interviewed in worker hostels were almost unanimous in their conviction that Islam does not allow contraception. For most of these men, using contraception is merely one of the problematic ideas women are exposed to in Europe. They attributed marital tensions and extended family conflicts to women’s decreasing respect for the husband as head of household and final arbiter of important decisions such as contraceptive use. When one young man cautiously

176 Carolyn Sargent suggested that when he married, he and his wife might space births by means of contraception, he was quickly rebuffed by older, married men. In the words of one man in his sixties, “This is why young people need to stay at the sides of their elders—because they don’t know anything!” In general, both men and women concurred that Islam prohibits the use of contraception except under exceptional circumstances (illness of the woman, as noted, or illness of another child). Men were more likely to argue against contraception on religious grounds, but women, while accepting this argument, used contraception nonetheless. To justify this stance, many women complained of fatigue from numerous pregnancies or short birth intervals and the difficulties of childrearing in France.’ Thus the embodied experience of reproduction and the pragmatics of everyday life in France contribute to women’s autonomous decisions to delay or space births, men’s opposition notwithstanding. Regardless of religious devotion, Islam may serve both as doctrine and as a philosophical framework for negotiating the social transformations experienced by migrants in diasporic Muslim communities. The flow of information and critique from midwives and social workers regarding contraception has produced a gendered debate framed in Islamic terms but expressing tensions and uncertainties surrounding women’s enhanced autonomy in France.

Institutional Responses: Accommodation and Resistance Based on this research, I suggest that a complex set of interests and

agendas inform the increasing use of contraceptives by Senegal River Valley migrant women. This study has documented multiple discourses on contraception that reflect cultural stereotyping and anti-immigrant personal politics on the part of some biomedical practitioners and strongly pro-immigrant, sometimes subversive efforts of a minority of midwives to empower migrant women. Such efforts include engaging skeptical husbands in debates on contraception, counseling interested and determined women on how to obtain the Pill in the face of family disapproval, and advising women to use contraceptive implants, a particularly “discrete” method for women who are concerned about confidentiality. Interpreters play an important role in the process of conveying information on contraception, although they are not available to sys-

When the Personal ts Political 177 tematically communicate with postpartum women. The interpreters have nonetheless developed a discourse on contraception that emphasizes modernity, underscoring the demands of life in France, where postpartum abstinence is difficult and extended family is unavailable to share in the burdens of childrearing. As this research has shown, reproductive strategies and decisions are the product of personal, institutional, state, and global processes. Transnational migration patterns linked to postcolonial politics, population and social welfare policies, rising unemployment, low-income housing shortages in Paris, and restrictive immigration legislation have

contributed to the pressures that ultimately affect—and disrupt— migrants’ reproductive and family goals. These broad-scale dynam-

ics powertully shape the structure and culture of public hospitals providing maternity services for migrant women. French health and social security benefits are generous and create a safety net for immigrants, whether legal or undocumented. To this extent, one must acknowledge the ideals that have produced this public health system. Public hospitals such as those discussed here are often underfunded, understaffed, and overwhelmed by clients with challenging medical, social, and cultural dilemmas. Given the pervasive issues surrounding appropriate translation capacity, midwives, doctors, nurses, and social workers find interactions with non French-speaking patients shaped by the very limited possibilities for communication. Nonetheless, midwives in particular demonstrate

a range of strategies for interpreting—in the broadest sense—the complex problems and needs of migrant women. Providing information about contraception is an explicit mandate of the hospital system. However, the personal and political philosophies of the midwives (as well as social workers and physicians) determine if and how that information is disseminated. Accommodation and resistance to such contested issues as immigration and cultural difference, especially the contentious question of France’s growing Muslim population, are thus features of the family-planning policy as it plays out in individual interactions among biomedical practitioners and West African Muslim women. Public hospital regulations state that contraception will be discussed

with all postpartum women. Malian women’s accounts of how they learned about contraception in France and their histories of contraceptive use convey both their own strategies and interests and those of hospital staff. The distribution of prescriptions for the birth control pill, without identification or explanation, is one instance where the intent of the practitioners certainly merits further consideration.

178 Carolyn Sargent Institutional transformations that would address some of the pitfalls

in the public-hospital family-planning policies would require confronting deeply entrenched biomedical and political ideologies. At the same time, some relatively straightforward modifications would create more ethical and efficacious discourse and practices. These include:

1) establishing a written policy that details the objectives of the family-planning “interview,” including the role of interpreters. In addition, there is an obvious need for administrators, interpreters, midwives, and nurses to discuss the empirical evidence concerning migrant women’s language competence; 2) enforcing a requirement for informed consent, currently a concept more often associated with procedures and interventions (surgery, participation in a clinical trial) than with distributing what is perceived as a routine prescription. Nonetheless, hospital policy for maternity patients should specify that if an interpreter is unavailable and a woman cannot communicate in French, she will not receive a prescription for the Pill, regardless of whether hospital staff consider it in her best interest; 3) disseminating information on Islamic contraception perspectives to doctors, midwives, and social workers in order to heighten sensitivity to religious concerns surrounding family planning. This is an especially controversial issue because of the secular tradition that constrains overt questioning about culture, ethnicity, and religion. However, in spite of these “republican” ideals, in reality the dossiers of many Malian migrant women in this study indicated their nationality of origin and ethnicity on the front cover and sometimes their religious affiliation. This suggests the possibility of introducing a pragmatic approach to discussing this facet of “cultural difference”; and

4) considering the benefits of discussing contraception with the woman alone rather than with her partner present. Women who asked for information to be provided to their partners would participate in a second interview. This would acknowledge the prevalence of clandestine contraception and men’s and women’s divergent views on contraceptive use.

Conclusion For West African migrants in Paris, widely shared understandings of

marriage, family, and gender relations have been disrupted in the

When the Personal ts Political 179 context of French immigration policies, biomedical protocols, and religious tensions. Indeed these broader state and institutional structures have explicitly problematized reproduction in the course of debates surrounding population dynamics and the perceived costs of immigrant fertility to the social welfare system. Such issues, contested at the level of national political discourse, also play out in the everyday lives of Malian and other West African migrants. Gendered controversies on topics such as the use of contraception have the potential to profoundly disrupt conjugal and family relations, spurred by biomedical and philosophical agendas of midwives, social workers, and interpreters. As women’s and men’s narratives have shown, the gendered debate on contraceptive use is often framed in

Islamic terms but fundamentally references significant uncertainty regarding women’s autonomy in France. The widespread, although erratic, use of the Pill by the majority of the women interviewed in this research, and the secret use of contraceptives by those women confronted with their husbands’ opposition, suggests that even under repressive family, medical, and political conditions, women continue to assert reproductive agency. At the same time, the increasing medicalization of childbirth and midwifery in France may further constrain immigrant women. The narrow biomedical perspective, now prevalent among the younger generation of French midwives, is quickly replacing a more holistic, woman-centered midwifery. Midwives in practice a decade ago describe their role as cultural mediator as well as maternity care specialist. In that era, midwives were more likely to situate migrant women in a complex cultural matrix and attempt to address reproductive dilemmas enacted in the lives of the families they served. This research, in tracing the experiences of women and men with family planning, speaks to the need for public health policies that attend to the larger social and political issues in which reproductive health is embedded. In particular, the study challenges assumptions that migrant women with little formal education, especially Muslim women, are passive and submissive. In spite of the gender complexities that imbue everyday life for West African migrant families and the parameters set by powerful state, religious, and medical institutions, women continue to identify and pursue their reproductive interests, strategies, and decisions. Thus the concept of disrupted reproductive experiences may comprise not only the interruption and contestation of local meanings and practices, but also creative negotiation and transformation in the gendered politics of reproduction.

180 Carolyn Sargent Acknowledgments I am grateful to the Wenner Gren Foundation and the National Science Foundation (BCS 0105192) for their generous support of this research since 1999. Fieldwork was conducted in collaboration with Dennis Cordell, Department of History, Southern Methodist University; Ismael Maiga, Professor of Sociolinguistics, University of Paris VI; and Samba Yatera, Research Sociologist, GRDR, Paris. Professor Yves Charbit, from the Centre Population et Interdisciplinarite, University of Paris V, kindly offered the research facilities of his laboratory, for which Iam most appreciative. In addition, Professor Didier Fassin, Ecole des Hautes Etudes, has served as a source of significant insights. Interviews in two public hospitals in Paris would not have been possible without the intervention of Dr. Denis Jacob and Dr. Bernadette Nere, whose advocacy made this research feasible. Finally,

I am deeply indebted to Stephanie Larchanche, Tiguide Yatera, and Bintou Baradji for their invaluable assistance with translation, data collection, and analysis.

Notes 1. Patrick Simon, National Institute for the Study of Demography, personal communication, June 2004; see also Sargent and Cordell 2003. 2. Totals for specific questions vary according to numbers of responses. 3. Ina review of thirty years of West African migration to France, Quiminal and Timera (2002) use the term “racism” to describe the hostile social climate these migrants have confronted. A few women in our sample also referred to racism in explaining why “the French” encouraged them to use contraception; many noted (and denied) the widespread public critique that Africans have large families to obtain numerous family allocation stipends. 4. An earlier study by Meredith Turshen et al. on migrant women’s “racist encounter with French norms” gave similar examples of women pressured to have fewer pregnancies and made to “feel guilty and ignorant by the staff of the maternal and child health centers” (1993: 92). 5. According to the director of a public family planning clinic targeting an African population, clients often confide their clandestine use of contraception. In the diverse clinical settings that served as research sites, a dominant line of discourse among midwives and with clients concerned

the particularities of clandestine contraceptive use, such as how long one could avoid pregnancy without the husband’s suspicions, where to successfully hide birth control pills, the perils of husbands who searched

When the Personal ts Political 181 women’s handbags and drawers for the Pill, and the role of co-wives in guarding or divulging “secrets” about contraception.

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Chapter 7 REPRODUCTIVE DISRUPTIONS AND ASSISTED REPRODUCTIVE TECHNOLOGIES

IN THE MUSLIM WORLD Marcia C. Inhorn

Introduction L their seminal volume, Conceiving the NewFaye World Order: The Politics of Reproduction, anthropologists Ginsburg and Global Rayna

Rapp (1995: 1) argue that reproduction, in both its biological and social interpretations, must be placed “at the center of social theory”—as the very “entry point to the study of social life.” Furthermore, Ginsburg and Rapp insist that “reproduction also provides a terrain for imagining new cultural futures and transformations,” often involving “transnational processes that link local and global interests” (2). In this chapter, I want to draw on these important insights as they apply to infertility and assisted reproductive technologies (ARTs). By definition, ARTs include in vitro fertilization (IVF) and the many variants of IVF that have now spread around the globe. In a volume on reproductive disruptions, it is first important to ask why infertility is important on a global level. The first half of this chapter examines seven reasons why infertility is a profoundly important reproductive disruption, leading to a global industry of ARTs.

184 Marcia C. Inhorn However, it is also important to note that local considerations— be they cultural, social, economic, religious, or political—shape and sometimes curtail the way in which ARTs are both offered to and received by non-Western infertile couples. To illustrate this point, the second half of this chapter focuses on the Muslim Middle East, where moral concerns surrounding the ARTs run deep and where major divergences regarding third-party gamete donation are occurring between the Sunni and Shi’a sects of Islam. In the second section, I focus on three Middle Eastern societies—Egypt, Lebanon, and Iran— to demonstrate the shifting moral landscape surrounding the spread of ARTs to the Muslim world.

Global Infertility and the Globalization of ARTs Demography and Epidemiology

Infertility is a profoundly important global health issue affecting mil-

lions of people worldwide, between 8 and 14 percent of couples in most societies around the globe (Bentley and Mascie-Taylor 2000; Reproductive Health Outlook 1999). In some societies, however— particularly those in the so-called “infertility belt” of central and south-

ern Africa—as many as one-third of couples are unable to conceive after a year or more of trying (Cates, Farley, and Rowe 1985; Collet, Reniers, Frost et al. 1988; Ericksen and Brunette 1996; Larsen 1994, 2000; World Health Organization 1987). Factors causing high rates of infertility in parts of the developing world are varied, but tubal

infertility due to sexually transmitted, postpartum, postabortive, and iatrogenic infections is widely regarded as the primary form of preventable infertility (Reproductive Health Outlook 1999; Sciarra 1994, 1997). Although rarely socially acknowledged, male infertility contributes to at least half of all cases worldwide and is often the most difficult form of infertility to treat (Devroey, Vandervorst, Nagy,

and Van Steirteghem 1998; Irvine 1998; Kamischke and Nieschlag 1998). Despite the high prevalence among males, infertility is paradoxically considered to be a “woman’s problem” around the world,

and thus the role of male infertility is vastly underestimated and even hidden in many societies (Inhorn 2002, 2003a, 2003b, 2004a). The Fertility-Infertility Dialectic

The major paradox of infertility is that its prevalence is often great-

est in those areas of the world where fertility is the highest—the phenomenon of so-called “barrenness amid plenty” (Sciarra 1994;

Reproductive Disruptions and Assisted Reproductive Technologies 185

Van Balen and Gerrits 2001). Problematic high fertility exists in a relationship of tension and contrast to problematic high infertility, a

situation I have characterized in my own work as “the fertilityinfertility dialectic” (1994). In fact, investigating infertility in resource-poor, high-fertility countries may shed significant light on issues of fertility, for infertility pro-

vides a convenient lens through which many fertility-related behaviors and beliefs can be explored. These include, among other things, ideas about conception and contraception; beliefs about the importance of motherhood, fatherhood, and children themselves; and perceptions of risk regarding the body and its reproductive processes. Despite the intimate connection between infertility and fertility, the control of infertility is rarely incorporated into programs of pop-

ulation and family planning in the purportedly “overpopulated” non-Western world. Although infertility is beginning to be recognized

as part of the broadly defined global reproductive health agenda emerging from the 1994 United Nations International Conference on Population and Development in Cairo, no guidelines have yet emerged on how to translate “prevention and appropriate treatment of infertility” into concrete strategies, particularly in resource-poor countries (Van Balen and Gerrits 2001). Health-Care Seeking

Yet, given the sheer numbers of infertile people worldwide, it should come as no surprise that infertility is a leading cause for those seek-

ing health-care in many countries. Studies from around the world have shown that infertile women—and, increasingly, men—are massive users of biomedical health care services. Thus, many of them have long and tortured “body histories” of often unsuccessful infer-

tility treatment (Inhorn 2003a). In addition, in many developing societies, the resort to both “traditional” and “modern” forms of infertility therapy, often simultaneously, is typical for many infertile people. Yet, studies from around the world demonstrate “how little formal health services have to offer them,” as infertility is notoriously difficult to treat (Van Balen and Gerrits 2001). Gendered Suffering

Given the very difficulty of overcoming infertility, this condition leads

to profound human suffering on a global scale. Women worldwide appear to bear the major burden of infertility, in terms of blame for the reproductive failing; emotional responses of anxiety, frustration, grief, and fear; marital consequences, including duress, abuse, divorce,

186 Marcia C. Inhorn polygamous remarriage, or abandonment; and social stigma and community ostracism (Van Balen and Inhorn 2002). Infertility can have

lifelong consequences, “affect[ing] a woman for the remainder of her life, preventing subsequent marriage, and making her economically vulnerable” (Sciarra 1994: 155-6). In the era of HIV/AIDS, in-

fertility can also lead to death, through unprotected intercourse in the effort to conceive. Adoption Restrictions

Unfortunately, “alternatives” to biological parenthood such as adoption or so-called “child-free living” are unacceptable in many nonWestern societies. Although Westerners often tout adoption as the “natural” solution to childlessness, adoption restrictions, both formal and informal, are found throughout many parts of the world. For example, in the Islamic world, the Qur’an explicitly prohibits legal adoption, although it encourages the kind treatment and upbring-

ing of orphans (Inhorn 1996; Sonbol 1995). In other parts of the world, particularly parts of sub-Saharan Africa and Oceania, “adoption” in the form of informal fostering arrangements, usually of relatives’ children, is quite common and viewed as a partial solution to infertility (Gerrits 2000; Ngwatfor 1994; Savage 1992). However, in Africa, the number of AIDS orphans has now exceeded the supply of foster parents, including infertile ones, leading to a surfeit of lit-

erally unparented orphans in many central and southern African countries. In other parts of the world, including parts of Latin America and Asia, “excess” babies—those born out of wedlock to teenaged mothers, born to poor families, exceeding state-mandated birth quotas, or undesired because they are female—are “marketed” at high costs to infertile Western couples (Jenkins 2002), who are sometimes accused of exploiting disadvantaged Third World women. Yet, Western couples who have suffered through infertility also have legitimate desires for children that may not be met by ARTs or local adoption agencies. Thus, as with the fertility-infertility dialectic, problems of global infertility are intricately related to problems of global adoption—including transnational movements of children—in ways that

highlight the politics of disrupted reproduction in all their global complexity. The Globalization of Assisted Reproductive Technologies

Taken together, these complex reproductive realities have fueled a global industry of ARTs. In short, IVF and other related reproductive

Reproductive Disruptions and Assisted Reproductive Technologies 187

technologies have spread rapidly around the globe in response to the difficulties posed by both infertility and by adoption. However, ARTs are not transferred into cultural “voids” when they reach disparate societies. By examining how these globalizing reproductive technologies have been received in local, non-Western sites, we can begin to assess both the benefits and the costs of this globalization process on the local level—that is, for real people attempting to grapple with both their infertility and their desires to overcome it, by using the latest reproductive technologies. Examining “the arenas of constraint”— or the various structural, ideological, social relational, and practical obstacles and apprehensions facing users of these technologies wherever they spread (Inhorn 2003a)—clearly serves to deconstruct the modernist myth that ARTs are some sort of “miracle solution” for infertility, a myth that has been questioned by a generation of feminist scholars (Thompson 2002). Furthermore, the global spread of ARTs provides a perfect case study of what Ginsburg and Rapp (1995: 3) have called “stratified

reproduction,” or “the arrangements by which some reproductive futures are valued while others are despised.” While ARTs may assist

global elites in reproducing socially esteemed children, these prohibitively expensive reproductive technologies, which range in cost from $2,000 per cycle in the developing world to $20,000 per cycle in the US, are rarely subsidized for those who may need them the most, namely, the poor, the indigenous, and, in the West, people of color who are at the greatest risk of infertility but who are, in fact, discouraged from reproducing under Western-sponsored regimes of population control (Inhorn and Fakih 2006). Local Moral Worlds

In addition to the economic barriers to ART access, ARTs are received, accommodated, and resisted within local moral landscapes, some of

them deeply inflected by religion. Medical anthropologist Arthur Kleinman (1992) has asked us to consider the “local moral worlds” accompanying the spread of biotechnologies into multifarious cultural and religious settings. In the world of ARTs, the importance of religiously based moral systems is striking, as shown, for example, in Susan Kahn’s pathbreaking book, Reproducing Jews: A Cultural Account of Assisted Conception in Israel (2000), which details the large body

of rabbinical rulings on the practices of ARTs among infertile Jewish patients. In the Muslim world, where I have conducted my own research over the past twenty years (2004b), moral concerns surround-

ing the ARTs also run deep, although in directions different from

188 Marcia C. Inhorn neighboring Israel. This issue of religious morality in an ever-changing ART landscape in the Muslim Middle East is addressed in the remainder of this chapter.

Assisted Reproductive Technologies in the Muslim World ARTs emerged in England, where Louise Brown, the world’s first testtube baby, was born in 1978. Only eight years after Louise Brown’s birth, the first Middle Eastern IVF clinic opened in Cairo, Egypt. Eight

years later, an even newer version of IVE intracytoplasmic sperm injection (ICSI), to overcome male infertility, was introduced to the Middle East. By the mid-1990s, IVF clinics had sprung up throughout the twenty-two nations of the Middle East, reaching even the smallest Arab Gulf countries, such as Bahrain and Qatar. By 2003, Egypt, with its population of seventy million, had at least fifty IVF clinics, more than any other Muslim or non-Muslim country in the region. Neighboring Israel, considered to be on the cutting edge of assisted reproduction, had twenty-four IVF clinics for a population of only six million, one of the highest numbers per capita in the world (Kahn 2000). However, tiny, neighboring Lebanon, with a population of approximately four million, had nearly fifteen IVF centers in 2003.

Furthermore, by the turn of the new millennium, Lebanon and Egypt were again on the forefront of this “brave new world” of reproductive technologies. Egypt was one of the first Middle Eastern countries to introduce preimplantation genetic diagnosis (PGD), an IVF-related technology used to “weed out” embryos with genetic disorders as well as to “select” embryos by sex in a part of the world

where son preference and daughter discrimination remain strong. Lebanon, meanwhile, was experimenting with third-party donor technologies, including sperm, egg, and embryo donation. In short, the Muslim Middle East provides an excellent regional example of the “global metric” of ARTs: namely, their rapid expansion and considerable dynamism as the technologies themselves have evolved over time. Although these technologies have helped literally thousands of infertile Muslim Middle Eastern couples give birth to test-tube babies—whose very lives can be seen as the greatest fruits of ART globalization—the technologies also have brought considerable moral controversy and concern, suggesting that it is vitally important to interrogate the “local moral” in the global “technoscape” surrounding the ARTs.

Reproductive Disruptions and Assisted Reproductive Technologies 189

In the Middle Eastern Muslim countries, Islamic religious proclamations called fatwas have profoundly affected the practice of ARTs in ways not commonly seen in the West. The influence of Islam on ARTs has become apparent during medical anthropological research

that I carried out first in Egypt and then in Lebanon during three distinct periods: from 1988-1989, when IVF was new in the region; in 1996, which could be rightly called the IVF “boom period” in the Middle East; and then in 2003, when I carried out a study, “Middle Eastern Masculinities in the Age of New Reproductive Technologies,” in Beirut, Lebanon. In each case, I conducted qualitative, ethnographic

interviews with Muslim IVF patients, both husbands and wives, now totaling nearly five-hundred patient couples. The results of my research in Egypt have been published in my book Local Babies, Global Science: Gender, Religion, and In Vitro Fertilization in Egypt (In-

horn, 2003a). In subsequent publications, I have focused on Lebanon (2004b, 2006a, 2006b), where Shi'ite Muslim-serving IVF clinics are taking their lead from Iran. In 2006, I had the opportunity to travel to Iran, where religious authorities, physicians, lawyers, and social scientists are openly debating the acceptability of ARTs, gamete donation, and other new forms of “technoscience.” I describe some of these developments in this chapter, highlighting Iranian innovations that are probably surprising to most Western audiences. Sunni Islam and IVF

To begin in Egypt, the Grand Sheikh of Egypt’s famed religious university, Al Azhar, issued the first fatwa on medically assisted reproduction, on 23 March 1980. Issued only two years after Louise Brown’s birth in England but a full six years before the opening of Egypt’s first IVF center, this initial fatwa has proved to be truly authoritative and enduring in all its main points. In fact, the basic tenets of the original Al-Azhar fatwa on IVF have been upheld by other fatwas issued since 1980, and have achieved wide acceptance through-

out the Sunni Muslim world. Sunni Islam, I should emphasize, is the dominant form of Islam found in Egypt and throughout the Muslim world. Between 80-90 percent of the world’s 1.3 billion Muslims are Sunni (Denny 2006). The Sunni Islamic position on ARTs clearly permits in vitro fertilization using eggs from the wife with the sperm of her husband and the transfer of the fertilized embryos back to the uterus of the same wile. However, since marriage is a contract between a wife and hus-

band during the span of their marriage, no third party should intrude into the marital functions of sex and procreation. This means

190 Marcia C. Inhorn that a third party donor is not acceptable, whether he or she is providing sperm, eggs, embryos, or a uterus (as in surrogacy). But to what degree are these fatwa declarations—particularly the explicit prohibition on any form of third-party donation of reproductive materials—actually followed by physicians in the Muslim world? A 1997 global survey of sperm donation among assisted reproductive technology centers in sixty-two countries provides some indication as to the degree of convergence between official discourse and actual practice (Meirow and Schenker 1997). In all of the Muslim countries surveyed—including the Middle Eastern countries of Egypt, Iran, Kuwait, Jordan, Lebanon, Morocco, Qatar, and Turkey, as well as a number of non-Middle Eastern Muslim countries, including Indonesia, Malaysia, and Pakistan—sperm donation in IVF and all other forms of gamete donation were strictly prohibited for three important reasons: the association with adultery, by virtue of introducing a third party into the sacred dyad of husband and wife; the potential for future haltf-sibling incest among the offspring of unknown donors; and the confusion of kinship, descent, and inheritance in the emphatically patrilineal societies of the Muslim Middle East. Shi’a Islam and IVF

Having said this, it is very important to point out how things have changed for Shi'ite Muslims since this global survey was published. Shi’a is the minority branch of Islam in Iran and parts of Iraq, Lebanon, Bahrain, Saudi Arabia, Aighanistan, Pakistan, and India (Cole 2002). It has often been in the news lately because of the US-led war in Iraq, as well as the battle between Israel and the Southern Lebanese Shi'ite political party/militia known as Hizbullah. Many Shi'ite religious authorities support the majority Sunni view, that third-party donation should be strictly prohibited. However, in

the late 1990s, the Supreme Jurisprudent of the Shi’a branch of Islam, Ayatollah Ali Hussein Khamanei, the hand-picked successor to Iran’s Ayatollah Khomeini, issued a fatwa effectively permitting donor technologies to be used. With regard to both egg and sperm donation, Ayatollah Khamanei stated that both the donor and the infertile parents must abide by the religious codes regarding parenting. However, the donor child can only inherit from the sperm or egg donor, as the infertile parents are considered to be like “adoptive” parents. However, the situation for Shi’ite Muslims is actually much more complicated. Because Shi'ites practice a form of individual religious reasoning known as ijtihad, various Shi'ite religious authorities have

Reproductive Disruptions and Assisted Reproductive Technologies 19]

come to their own conclusions about sperm and egg donation. There are major disagreements about

(1) whether the child should follow the name of the infertile father or the sperm donor; (2) whether donation is permissible at all if the donors are anonymous; (3) whether the husband of an infertile woman needs to do a mut’a (temporary matriage) with the egg donor, then release her from the marriage immediately after the embryo transfer in order to avoid zina, or adultery. Such mut’a marriages are condoned in Shi’a but condemned in Sunni Islam (Haeri 1989); and (4) whether a married Shi'ite Muslim woman can do a mut’a marriage with a sperm donor, which would constitute an illegal state of polyandry. In theory, only widowed or otherwise single women

should be able to accept donor sperm in order to avoid the implications of zina. However, in Muslim countries, single motherhood of a donor child is likely to be socially unacceptable. Indeed, Iran recently made sperm donation illegal, although surrogacy has been permitted (Tremayne 2005). Given these moral ambiguities, married infertile Shi'ite couples truly concerned about carrying out third-party donation according to religious guidelines find it difficult to meet these various requirements, particularly those regarding sperm donation. Yet, having said that, in the Shi'ite Muslim world, including in Iran and Lebanon, at least some Shi'ite couples are beginning to receive donor gametes, as well as donating their gametes to other infertile couples. For infertile Shi'ite couples who accept the idea of donation, the introduction of donor technologies has been described as a “marriage savior,” helping to avoid the “marital and psychological disputes” that may arise if the couple’s case is otherwise untreatable. The Introduction of ICSI

Indeed, infertile Muslim women face considerable marital risks, particularly in the era of ICSI, a new solution for male infertility that ironically has increased the potential for divorce in the Muslim world. Since its introduction in Belgium in 1992, ICSI has heralded a revolution in the treatment of male infertility (Fishel, Dowell, and Thornton 2000; Hamberger and Janson 1997), as men with very poor semen protiles—even those without any mature sperm in the ejaculate— are now able to produce a “biological” child of their own. As long as a single viable spermatozoon can be retrieved from a man’s body,

192 Marcia C. Inhorn even through painful testicular aspirations and biopsies, this spermatozoon can be “injected” directly into an oocyte, thereby increasing the chances of fertilization (Fishel, Dowell, and Thornton 2000). Not surprisingly, the arrival of ICSI in the Middle East in the mid-1990s has led to the flooding of IVF clinics with male-infertility cases—tfor example, about 70 percent of all cases in the Egyptian and Lebanese clinics in which I worked.

For infertile men, it is fair to say that the arrival of ICSI in the Middle East has been nothing short of liberating. As a “new hope technology,” ICSI has given men faith that their infertility can ultimately be overcome, and it has restored their masculinity, which is seriously impaired by male infertility. No longer a deficiency of manhood, male infertility is “a medical condition, like any other medical condition” and is seen as medically remediable in the IVF clinic. Additionally, ICSI’s arrival across the Middle East has led to male infer-

tility “coming out” from behind its veil of secrecy. Many Middle Eastern IVF clinics now openly advertise ICSI as the solution to male

infertility, making the public generally aware of this condition and technology. Indeed, male infertility in the era of ICSI has proven to be a fascinating topic of research in the Middle East (Inhorn 2004a), one that needs to be replicated in other parts of the world. But what about the wives of these infertile men, who have “stood by” their husbands for years, even decades in some cases? Many longterm, faithful wives of infertile men may have grown too old to pro-

duce viable ova for the ICSI procedure, for ICSI relies on healthy ova, even in the absence of healthy sperm. Without the options of either egg donation or adoption, infertile Muslim couples with a reproductively elderly wife face four difficult options: remaining together permanently without children; legally fostering an orphan, which is rarely viewed as an acceptable option; remaining together in a polygynous marriage, which is rarely viewed as an acceptable option by women themselves; or divorcing so that the husband can have children with another partner. In my research in Egypt and Lebanon, the first option has proven to be the most common. Namely, infertile husbands and “fortysomething” wives often love each other deeply and remain together in long-term marriages without children. Thus, divorce is not the immediate consequence of infertility, as is stereotypically portrayed. However, because of the Sunni Islamic restrictions on the use of donor eggs, at least some men are choosing to divorce or take a second wile,

believing their own reproductive destinies lie with younger, more fertile women (Inhorn 2003a).

Reproductive Disruptions and Assisted Reproductive Technologies 193

However, in Lebanon, with its Shi'ite majority, the recent Shi'ite fatwas allowing egg donation have been a great boon to marital relations. There, both fertile and infertile men with “old” wives are lining up at IVF clinics to accept the eggs of donor women. Some of these donors are other IVF patients, and some are friends or relatives. In at least one clinic, some egg donors are non-Muslim, unmarried American girls traveling to Lebanon for a fee in order to anonymously donate their eggs to conservative Shi'ite Muslim couples who, in Lebanon, may be members of Hizbullah, officially described by the US administration as a terrorist organization. Furthermore, quite interestingly, in multisectarian Lebanon, the recipients of these donor eggs are not necessarily only Shi'ite Muslim couples. Some Sunni Muslim patients from Lebanon and other Middle Eastern Muslim countries, such as Egypt and Syria, are quietly slipping across transnational borders to “save their marriages” through the use of donor gametes, thereby secretly “going against” the dictates of Sunni Muslim orthodoxy. In short, the arrival of ICSI and donor technologies in the Muslim Middle East has led to a brave new world of reproductive possibility never imagined when these technologies were first introduced nearly twenty years ago. These technologies have engendered significant medical transnationalism and reproductive tourism; mixing of gametes across ethnic, racial, and religious lines; and the birth of thousands of ICSI and, now, donor babies to devout infertile Muslim couples. The frankly adventurous attitude of otherwise conser-

vative, male Shi’ite religious leaders toward third-party gamete donation has led to a potential transformation in marital relations among infertile Shi'ite Muslim couples; a rethinking of traditional notions of biological kinship and parenthood; and the moral accommodation of previously perceived immoral reproductive acts. In my view, these multiple transformations are powerful indicators of the profound social effects that reproductive technologies may engender in the new world order. Indeed, Iran is currently the country to watch, as it has been on the “cutting edge” of new reproductive technologies, largely as a result of novel fatwas being issued by otherwise conservative ayatollahs. In March 2006, I traveled to Iran, where I was invited as a keynote speaker in a conference devoted entirely to gamete donation. Ironically, I—a non-Muslim medical anthropology proftessor—was asked to represent the Sunni Muslim position on IVF and gamete donation to this completely Shi'ite Muslim, Farsi-speaking audience. The conference was totally fascinating. In my long coat and headscarf, I was

194 Marcia C. Inhorn treated as an honored guest, in front of several hundred audience members, including lawyers, physicians, and Shi'ite ayatollahs. It is important to reiterate that Iran is the only country in the world to be ruled by a Shiite clergy. Unlike the Sunni clergy, Shi’ite ayatollahs are free to take unique stances on matters of technological innovation, often disagreeing with one another on matters of religious permissibility. Because of the aforementioned practice of ijtihad in

the Shi'ite world, there are divergent opinions about the religious morality of gamete donation. Whereas Ayatollah Khamanei has approved of gamete donation, other Iranian religious authorities do not support this decision, agreeing with the Sunni ban on gamete donation and especially the use of donor sperm for male infertility. Indeed, the conference I attended was a fascinating example of ijtihad in action, with various ayatollahs, dressed in their stately robes

and turbans (black for the sayyids, or descendants of the Prophet Muhammad), arguing on the stage about the moral permissibility of embryo and gamete donation. The disagreements generated in public were also debated in the more private recesses of the conference. For example, a Bahraini Shi‘ite cleric staying at our guest residence took great pains to describe his opposition to all forms of gamete donation. To prove this point, he provided me with a copy of his book on Islamic personal status law, which has been translated into En-

glish and supports his position, based on evidence from the traditional Muslim scriptures. According to him, Iran is “innovating” in ways that are religiously unacceptable and at odds with the rest of the Muslim world. For example, not only has the Iranian parliament passed a law permitting embryo donation, but future “pro-donation” legislation in Iran may legally permit egg donation, sperm donation, and gestational surrogacy. Once passed into law, gamete donation of all kinds will be difficult to stop. Meanwhile, in the absence of formal legislation, some IVF physicians in Tehran (as well as in Shi’itedominant Lebanon, which is closely following the Iranian lead) are using the legal vacuum to practice all forms of gamete donation among their desperate infertile patients. Not all of these patients are

infertile Iranian Muslims; one of the largest and busiest clinics in Tehran caters to hundreds of Arab patients from the Persian Gull countries, the majority of whom are Sunni Muslims. In short, Iran is currently a country to watch on many levels. It is the site of an award-winning population program, in which a comprehensive family planning program includes the encouragement of

vasectomies. As a result, the country has experienced one of the

Reproductive Disruptions and Assisted Reproductive Technologies 195

sharpest fertility declines ever recorded, a very low fertility level similar to that of many developed countries. The level of education, particularly that of girls, has increased significantly. About 62 percent of university students are female.

In addition, both organ transplantation and sex-change operations have been approved by the Iranian clergy. The Ministry of Health is coping openly with its drug-related HIV/AIDS epidemic through innovative needle-exchange and rehabilitation programs. Stem-cell science has emerged as a byproduct of the active IVF programs in the country, and infertility has been placed on Iran’s reproductive health and family planning agenda, one of the few examples in the world where IVF is partially state-subsidized. All in all, these developments convince me of the need to recog-

nize the “high-modern” nature of Iran, which is currently on the cutting edge of developments in reproductive science and technology (Adelkhah 2000; Keddie 2003). It also bespeaks of the need to de-vilify—indeed, de-demonize—the Shi’ite Muslim clergy, who are condoning these various innovations but are generally represented as backward and fanatical in the Western media.

Conclusion Despite this veritable ART revolution in Iran, it is important to end on a more sobering note. Namely, most infertile Muslim couples, in Iran and elsewhere, will never know the joy of producing a Muslim IVF baby, due to the overwhelming arenas of constraint facing them. ARTs will probably never be a viable solution for the world’s infertile poor, given the low rates of ART efficacy and lack of government investment for these services in the midst of structural adjustment programs and other economic constraints. In some ways, the governmental neglect of infertility and its treatment through ARTs seems justifiable given that many societies face other pressing health problems, including epidemic diseases such as AIDS, perceived overpopulation, shortages of health care resources, and deteriorating public health infrastructures (Bennett, McPake and Mills 1997; World Health Organization 2000). Thus, ignoring infertility may seem to be a reasonable response if it is argued that infertility is not a life-threatening “disease” and having children is not necessarily a basic human right.

But for the millions of infertile citizens around the globe, their childlessness is no trivial matter. Infertility may ruin their reputations,

their marriages, their livelihoods, their physical health, and their

196 Marcia C. Inhorn long-term security in ways that are truly disastrous. Indeed, infertility is a particularly pernicious form of reproductive disruption, one that engulfs whole lives in endless circles of treatment-seeking and human suffering. So, what can be done? In my view, the most salient and clear-cut need is for prevention of the many preventable causes of infertility, particularly early and effective treatment of the reproductive tract infections that lead to tubal infertility (Sciarra 1997). Nonetheless, because not all infertility can be prevented—and this is particularly true of male infertility—there will always be a desire for the latest, most modern reproductive technologies to overcome this problem, even in resource-poor locations of the developing world.

It is our responsibility as reproductive scholars to follow these global technologies into the future, anticipating the ways in which even newer technologies, including ooplasmic transfer, PGD, human cloning, embryonic stem cells, and the like, will make their way into the diverse moral and social imaginaries of numerous local societies around the globe. As long as the global infertility problem continues unabated, the globalization of ARTs will continue well into the new millennium, reaching places like Egypt, Lebanon, Iran, and beyond. Such is the complex new world order of reproductive disruption and reproductive interconnection in which we now live.

Acknowledgments My deepest gratitude goes to the many infertile Middle Eastern women and men, IVF physicians and nurses, research assistants, and various faculty and staff members at a number of Middle Eastern hospitals, clinics, and universities who have participated in or in other ways facilitated my research over the past two decades. I am also grateful for grants received from the US Department of Education’s Fulbright-Hays program, the Fulbright International Institute for Education, and the National Science Foundation.

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Chapter &

THE FINAL DISRUPTION? BIOPOLITICS OF POST-REPRODUCTIVE LIFE Margaret Lock

Introduction () verofthe past several decades,debate the female body haswith become the site ever more contentious in connection the medical practices performed upon it. Ranging from preimplantation genetic diagnoses to postmenopausal pregnancies, women are subject to the medical “gaze” with increasing intensity (in Michel Foucault’s idiom) and to the practices associated with emerging biomedical technologies. However, research has shown that the medicalized body, female or male, is not merely the product of medical interests and technological innovation. It is also a manifestation of potent, never settled, partially disguised political and cultural contests that inform normalized bodily discourse (Bordo 1993) and that profoundly influence subjective experiences (Lock 1993) policymaking, and investment strategies on the part of the pharmaceutical industry (Oudshoorn 1994). In this chapter, I will revisit a subject that I first researched twenty years ago, that of female aging (Lock 1993), with an emphasis on discourse, practice, and subjective experience in connection with meno-

pause. This particular historical trajectory is remarkable because professional recommendations for the medicalization of menopause

The Final Disruption? 201 during this relatively short time span have changed dramatically more

than once, with enormous implications for the health of women. Moreover, the past two decades have made it abundantly clear that medicalization of this life-cycle transition is not globally uniform, with implications for theory and methods in social science research. Mike Featherstone and Mike Hepworth (1991) argue that repre-

sentation of the life course is undergoing reconceptualization. In place of an inflexible age-based chronology, there is recognition of malleability, of a “process ... which need not involve a predetermined series of stages of growth” (375). Thus, whatever normative expectations society may retain about an orderly progression through the

life course, it is evident to some researchers that this is not borne out in practice. Despite their commitment to flexibility, Featherstone and Hepworth are unwilling to locate the body in the terrain of the hyperreal. They are quick to remind us that the physical existence of the body cannot be ignored and that culture cannot mold nature in any way it chooses. The nature/culture divide as to be confronted at some point in representations about birth, growth, maturation, and death. This is not to assert that the biological body should

be conceptualized as an invariant base upon which culture is layered as so much flotsam. Nor should the universalized “natural body” remain as “the gold standard of hegemonic social discourse” (Haraway 1989: 355). Years ago, Russell Keat chastised contemporary philosophers and social scientists for consigning the human body to the supposedly neutral terrain of scientists (1986: 24). Today it is abundantly clear that we can no longer afford to take this liberty, if for no other reason than that biomedical technologies—the “artifice of culture,” in Marilyn Strathern’s usage (1992)—permit us to go beyond mere representations of nature and to enter the arena of radical reconstruction of what were formerly assumed to be the unassailable boundaries between nature and culture. As a result of our tinkering, the material world is made increasingly plastic (Rabinow 1992; Lock 1995). In short, we no longer seek merely to “combat” disease but to wrest control from nature entirely. Taking charge of aging is a prime ob-

jective today, in part because of governmental worries about the burden of aging populations on economies worldwide, and extensive investment is being made into the development of enhancement technologies for this purpose. The introduction of endocrine replacement therapies into clinical practice in the early twentieth century was a first tentative effort to “denaturalize” aging and constituted preliminary steps toward the

202 Margaret Lock wholesale “enhancement” of older women. By the 1970s, recommendations by gynecological professions in the West called for the prescriptions of hormone replacement therapy (HRT) to be given to virtually every woman once middle aged, with the exception of those at very high risk for breast cancer. Today, based on controver-

sial results from longitudinal randomized controlled trials, these recommendations have been radically modified, resulting in a dramatic decline in the use of HRT. This vexed history is perhaps an augury for the future. Wresting aging from nature may not be as easy as some apparently believe it to be (Scientific American 2004). Of course, the pharmaceutical, clinical, and epidemiological aspects of these events are only part of the story. Research carried out in Japan and North America in the 1980s made it clear that medical and popular discourse about female aging and the extent of a need for medical assistance at the end of reproduction was construed in remarkably different ways in these two locations. The permeation of this discourse by culturally infused values was striking (Avis et al. 1993; Lock 1993). But from the outset it was evident that it would not be expedient to simply settle for an argument about cultural construction; the politics of post-reproductive life was also implicated. In addition, the Japanese data demonstrates the importance of subjective accounts regarding the body that force reflexive reconsideration of what is so often assumed to be universal. It became clear while doing the research that the black box of the material body itself should be pried open. In this chapter, I will first set out what has taken place in North America over the past twenty years with respect to the medicalization of menopause. Second, I will turn to Japan to document briefly

what has taken place in that country over the same time period. These parallel stories provide a cautionary tale against maintaining simplified assumptions about the emergence of globalized bodies as a result of expanding medicalization; they also highlight the way in which women’s organizations and women themselves have not only been resistant at times to medicalization, but have actively participated in bringing about policy changes.

Managing the Anomalous Post-Reproductive Female Commencing from the latter part of the nineteenth century in West-

ern Europe and North America, in contrast to Asia, for example, medical discourse about middle-aged women focused obsessively on

The Final Disruption? 203 menopause and the supposed long-term consequences to health in later life of an “estrogen starved body.” The bulk of the medical literature until the end of the twentieth century has been preoccupied with pathology and characterizes the end of menstruation as a time of loss, failure, and decrepitude (Martin 1987; Lock 1993), although some dissenters to this dominant ideology always existed. Until the

1980s, popular literature tended to emulate the medical model (Smith-Rosenberg 1985; Sontag 1972).

Why has there been such an emphasis on female decrepitude? Surely aging is an unavoidable process common to both men and women. The answer lies partly in the influence of psychoanalytic theory, particularly during the first part of the twentieth century, with its emphasis on a presumed universal psychological response of loss associated with the end of female reproductive life. Looking back on the writing, just over fifty years ago, of feminist, Simone De Beauvoir on the subject of menopause is startling. She asserts authoritatively, “Long before the eventual mutilation, woman is haunted by the horror of growing old” and adds ominously, “When the first hints come of that fated and irreversible process which is to destroy the whole edifice built up during puberty, she feels the fatal touch of death itself” (1952: 542). De Beauvoir talks about the “pathetic

urgency” with which women try to “turn back the flight of time” and claims that some women continue to have menopausal difficulties until death. She ruminates on the “sad hours of depression” and attributes this to the “over-activity of the pituitary gland” in its effort to compensate for the decline of the female sex hormones but goes on to emphasize that “above all” the psychological state governs changes in mood. De Beauvoir concludes that in middle age, a woman has “finally” won some freedom from “slavery” to her sex, but she wonders to what purpose: “She finds this freedom at the very time when she can make no use of it. This recurrence is in no ways due to chance: patriarchal society gave all the feminine functions the aspect of a service, and woman escapes slavery only at times when she loses all effectiveness” (1952: 550). De Beauvoir cites the Freudian psychoanalyst Helene Deutsch as

inspiration for some of her ideas; Deutsch, influential in both the German- and English-speaking worlds, stated several years prior to the publication of The Second Sex, “There is no doubt that the mastering of the psychologic reactions to the organic decline [of the climacterium] is one of the most difficult tasks of woman’s life” (1945: 456). She points out that the course of the climacterium is “deter-

mined” by the “fact that with the cessation of ovarian activity the

204 Margaret Lock remainder of the endocrine system is deranged in its functioning” but goes on to emphasize that the “individual manifestation of the climacterium” depends “greatly” on any one woman’s personality. Deutsch believed that women return to a more childlike psychic attitude during the climacterium. In common with many nineteenthcentury physicians and with Margaret Mead a few years later (1949: 229), she likens it to puberty and states that it is often a time of increased artistic activity as a “defence mechanism” for the unavoidable “immanent disappointment and mortification.” She concludes: At the moment when expulsion of ova from the ovary ceases, all the organic processes devoted to the service of the species stop. Woman has ended her existence as bearer of a future life, and has reached her natural end—her partial death.... She is now engaged in an active struggle against her decline.... Little by little the whole female genital apparatus is transformed into a number of inactive and superfluous structures.... The changes that take place in the body of a climacterial woman have the character not only of the cessation of physiologic production but also of general dissolution.... Because of these manifestations, the climacterium is known as the “dangerous age,” and a certain type of aging woman has become a comical theatrical type (1945: 460-2).

Deutsch insists that the only possible way to defray the damage is to apply oneself with grace to the role of grandmother.

That this strident tirade against female aging should have been penned most vociferously by women, and influential women at that, is paradoxical (De Beauvoir and Deutsch were both translated into many languages, including Japanese). Both writers are groping for a way out of what they perceive to be a misogynist ideology of anatomy as destiny. In doing so, they offer in its place an argument that inadvertently reinforces and consolidates the ideology by drawing on a gendered psychological determinism, out of which is created a

seamless whole—a relentless feedback loop of decay and misery from body to mind and mind to body. In addition to the negative impact of psychoanalytic theory and its derivatives, fortunately virtually forgotten today, a quite different set of unexamined assumptions held by many experts and that persist to the present time have also contributed to this negative ideology. For example, just over a decade ago, Gail Sheehy blithely stated, “At the turn of the century, a woman could expect to live to the age of forty-seven or eight” (1992: 227), a sentiment expressed

widely not only in popular literature but also in scientific articles

The Final Disruption? 205 over the years. Roger Gosden, writing a text for biologists, stated explicitly that the very existence of “post-menopausal” women is some-

thing of a cultural artifact, the result of our “recent mastery of the environment” (1985: 2). These authors do not recognize that high rates of infant and maternal mortality served until well into this century to keep life expectancies low. If mean life expectancy is all that is considered, and no account is taken of remaining life expectancy once aged forty-five or older, the presence of older people in all societies, including those where hunting and gathering and subsistence-farming economies continue to be practiced, is masked (Kertzer and Laslett 1995). Coupled with this faulty demography is a second assertion common

until recently in the medical literature: that the human female is the only member of the class Mammalia to reach reproductive senescence during her lifetime. A gynecologist, writing in a textbook, put it this way: “With increasing longevity modern woman differs from her forebears as well as from other species in that she can look forward to 20 or 30 years ... after the menopause” (Dewhurst 1981: 592).

Arguments such as this one suggest that the very existence of older women goes against Nature’s purpose. A thinly disguised assumption appears to be that reproduction of the species is what female life is all about, and in contemporary society we find ourselves living with an ever-increasing number of perambulating anomalies. On occasion, medical journals have been explicit about the bottom line of such arguments, namely the estimated “cost” to society of the increasing numbers of decrepit women living into their eighties and beyond (Lufkin and Ory 1989). What is willfully forgotten in these arguments is that the maximum human lifespan potential is somewhere between ninety-five and over one hundred years. Moreover, biological anthropologists have long argued that menopause in human females evolved approximately 1.5 million years ago, most probably as an adaptation to the long-term nurturance necessary for highly dependent human infants, a dependency not found in apes (Peccei 1995, 2001). Nevertheless, in medical literature, middle-aged women are often explicitly contrasted with the animal world, and found wanting; they are also compared to their detriment with younger, fertile women, whose bodies are taken as the standard for women of all ages (Lock 1993: 38). Of even more significance, perhaps, is that women’s bodies differ from those of men. Donna Haraway asserted over a decade ago that “the ‘neutral,’ universal body was always the unmarked masculine” (1989: 357).

206 Margaret Lock Physicians, Pharmaceutical Companies, and the Government A firm belief in the “unnatural” condition of all women as they age, coupled with the idea that an irreversible decline in health was in-

evitable, provided enormous stimulus for medicalization of postmenopausal life. As noted above, a triangulation of interests among gynecologists, laboratory scientists, and pharmaceutical companies fueled a small replacement therapy industry early in the twentieth century, in which whole ovaries were ground up and injected into patients who had undergone an early menopause, usually due to surgery (Oudshoorn 1990). This practice was simply a spinoff from another larger research project, however, in which the subjects were middle-aged men who had been injected with ground-up testes as rejuvenation therapy. By the late 1930s, one or two gynecologists had explicitly likened menopause to a deficiency disease—specifically diabetes and thyroid deficiency disease (Shorr 1940)—but the pharmaceutical industry did not become involved to any extent with the “estrogenic relief of menopause” until the 1940s, after the development of synthetic estrogens (Bell 1987; Frank 1941: 863). In spite of the availability of

medication thought to counter the supposed deficiency, very few practitioners conceptualized menopause as outright pathology until the mid-twentieth century. On the contrary, most physicians were vociferous in describing the end of menstruation as a normal event and were opposed to the use of estrogens except under extenuating circumstances, largely because of a concern about iatrogenesis (Bell 1987). The result was that only a very small number of women— most of them having reached an early menopause due to surgery or for other medical reasons—were regularly medicated with estrogens prior to the mid-1960s. Early in the twentieth century, it had been recognized that heart

disease is a major cause of mortality in postindustrial society and that men are at a greater risk for heart attacks than are women. Substantial research funds were poured into clinical and epidemiological studies of heart disease, most of it directed toward male sub-

jects. Almost as an afterthought, it was noted that young women whose ovaries had been removed were apparently subject to an increased risk for heart disease, and hence it was hypothesized that estrogen, secreted by the ovaries, must act as a protective factor. As a result of this observation, experiments were carried out in which men were administered estrogen therapy in clinical trials, but “an

The Final Disruption? 207 unexpectedly” large number of heart attacks “often” leading to death were recorded for the subjects of these studies (Furman 1971: 47). These experiments were hastily abandoned, but the seeds of the idea that estrogen therapy could be used as a prophylactic against heart disease had been sown. All that remained was to locate a suitable target population, and clearly men would not do! The situation changed dramatically in the 1960s, when, as a re-

sult of drug company marketing, medical attention lighted firmly for the first time on the postmenopausal woman, her thirty years of remaining life, and the constant “management” necessitated by being at an increased risk for broken bones and a failing heart due to estrogen deficiency. Clinical practice was no longer confined to what were

for most physicians the rather inconsequential symptoms directly associated with menopause, notably the hot flash. Estrogen replacement therapy became the medication most widely used, and because the baby boomers were entering middle age, the stakes for a financial sweep by the drug companies were very high indeed (Lock 1993).

By the 1970s, estrogen replacement therapies were among the top five most frequently prescribed drugs in the United States. But a sudden sharp decline in their prescription took place after 1975, when four studies were published in major medical journals linking estrogen replacement medications to an increased risk for endometrial cancer. A protracted debate ensued as to how best to “protect” women from the postulated effects of reduced estrogen in the postmenopausal body without causing severe side effects (Kaufert and McKinlay 1985). Writers of these articles shared an assumption that the female body is unable to age in reasonably good health unless

regularly fueled with hormones: “Clinicians abound who believe that the menopause is a physiological event, a normal aging process, therefore estrogen replacement therapy (ERT) is meddlesome and

unnecessary. Presbyopia is a normal aging process, but none will deny the need for spectacles. To do nothing other than offer sympa-

thy and assurance that the menopause will pass, is tantamount to benign neglect” (Greenblatt and Teran 1987: 39).

Assessing Hormone Replacement Therapy From the early 1980s, combined hormone replacement therapy (HRT), composed of estrogen and progesterone, replaced “unopposed estro-

gen” as the drug of choice, although women who had undergone a hysterectomy and were not therefore at an increased risk for cancer

208 Margaret Lock continued to be prescribed estrogen alone. Physicians were now expected to weigh up the “risks” and “benefits” of HRT on the basis of which, in consultation with “informed” patients, appropriate therapy would be selected. The rate of HRT prescriptions skyrocketed, but because no evidence existed about what might be the long-term elffects of imbibing hormones for years on end, several clinical trials were approved, the most important of which is known as the Women’s Health Initiative (WHI). This trial, designed to run for 8.5 years, recruited 16,608 postmenopausal women aged 50-79 years, half of whom received HRT. On 31 May 2002, more than three years before the trial was due to be completed, the data and safety monitor-

ing board in charge of running the trial recommended that it be summarily stopped because the findings to date showed that an increased risk of breast cancer exceeded the expected benefits from HRT. It was agreed, on the basis of these and other findings, that HRT is not a viable intervention for primary prevention of chronic

diseases, in particular for coronary heart disease (Journal of the American Medical Association 2002). This decision caused something of a panic among women, gynecologists, and the pharmaceutical industry. The North American Menopause Society (NAMS) published two position statements, one in 2002, and another in 2003. These comprehensive statements freely

admit the lack of sound medical knowledge on which the promotion of HRT had been based, and recommendations are made for use of HRT only on a short-term basis, at low dosages, to reduce hot flashes and other troublesome symptoms—in other words, a return to a situation that resembles that up until the 1960s. In recent years, NAMS has supported controlled trials investigating the efficacy of complementary and herbal remedies to counter vasomotor symptoms, including black cohosh, primrose oil, and soy beans. Thus far, the findings have been inconclusive to negative (not surprising given that herbal remedies inevitably fare badly in clinical trials, something well known among pharmocognocists) (Low Dog 2004; Huntley et al. 2003; Murray et al. 2003). Discussion among

medical professionals of the need for all women to take HRT for their remaining lives has disappeared entirely and been replaced by a much more cautious discourse about “natural” aging, best achieved with physician assistance. The dangers of smoking and the positive effects of exercise are prioritized; menopause is subsumed into the

more encompassing phenomenon of aging; and medicalization of aging of both women and men is now considered essential to remaining in good health (Institute of Medicine 2004).

The Final Disruption? 209 A comprehensive survey of the prescription of HRT in the United States from 1995 to 2003, shows a dramatic decline in prescription

rates from the middle of 2002 onward, a decline that continues to this day. In 1999, 90 million hormone prescriptions were handed out to approximately 15 million women, a third of them over 60 years of age. By 2003, this number was down to 57 million (Hersh et al. 2004). More notable, is that for those women who continue to use this medication, the recommended doses are much smaller and the duration of use very much shorter. Of great interest is the substantial decline in promotional expenditure on the part of involved drug companies in connection with HRT (Majunder et al. 2004), which no doubt greatly influences prescription practices. Critical commentary about the medicalization of female aging published for more than two decades by the National Women’s Health Collective in Washington (2002), as well as various women’s organizations in other countries, probably influenced some medical practitioners and above all had an impact on women themselves, heightening their critical judgment. A World Health Organization position statement, to which social scientists contributed, was highly critical of blanket recommendations for long-term HRT use and included an important chapter about the menopausal experience and cultural diversity (1996). This document, likewise, had a significant impact on some clinicians and indirectly on the numerous women who sought out information through women’s groups and on the internet. At the time that the WHI trial was stopped, media coverage was extensive,

and headlines such as “Hormone-use Risk Greater than Benefit” and “Women Warned to Avoid Hormone Therapy” must have contributed greatly to the abrupt drop in requests for HRT prescriptions. In summary, promotion of the long-term use of replacement therapy is directly linked to the intimate relationship between the medical profession and the major pharmaceutical companies that manutfacture estrogen and progesterone. Governments provided indirect support to medicalization because of concern about the economic “liability” of aging female populations. But pharmaceutical companies and governments alike came to recognize the postmenopausal woman as a target for their interests many years after her creation by the medical profession (originally in the middle of the nineteenth century, in Europe [Lock 1993]). Over the past decades, a discourse for an exclusively medicalized maintenance of aging has been persistently challenged by individual women, numerous women’s organizations, social scientists (see, for example, Palmlund 1997), some physicians (Love 1997; Price and Little 1996), and feminists (Freidan 1993; Greer

210 Margaret Lock 1991), although others have always supported it strongly as a means of overcoming the biological shortcomings of female bodies. The “wellness” clinics that have recently sprung up for middle-

class patients in North America and elsewhere are explicitly designed to counter an approach to aging that emphasizes pathology, and in doing so they emulate the current professional guidelines put out by gynecological societies. Chemical enhancement of female aging is proving to be very troublesome—biologically and ethically.

Midlife in Japan: Harbinger for the Future While doing research in Japan in the 1980s, I found that despite a concern about the “graying” of the nation as a whole, aging itself was not thought of as an anomaly, and very little attention indeed was paid to the end of menstruation. More surprising, when I discussed my research plans with Japanese friends, not only were they surprised that such an investigation was of interest to me, they assumed I would be handing out my questionnaires to both men and women because, of course, men have menopause, too! Until relatively recently, the life course of an individual has been primarily recognized in Japan on the basis of its cumulative contribution to the family and society as a whole. Recognition of continuity with past generations, marked by memorialization of ancestors, reinforced

the notion that each individual is part of an encompassing, cosmically ordained order (Smith 1974). David Plath and others showed that movement through the life cycle is subjectively experienced in Japan largely in terms of how one’s relationships with other people shift through time and, particularly for women, life is expected to become meaningful according to what they accomplish for others rather than for themselves (1980: 139). Under these circumstances, the end of menstruation has never been a very potent symbol in Japan. While mourning for the loss of youth and sexual attractiveness on the part of some women was occasionally evident two decades ago, the majority gave emphasis to the inevitable process of aging itself: graying hair, changing eyesight, faulty short-term memory, and so on (Lock 1986). Furthermore, while obviously representing an irreversible transformation, these signs of

aging are primarily signifiers for the future, notably an enfeebled body and an inability to work and contribute to family or society. When doing research in the 1980s, I found that no clearly marked distinction was made between the aging of men and women, and the idea that old people are anomalous was literally laughable.

The Final Disruption? 211 In response to a questionnaire I administered in 1983 to over 1,300 Japanese women aged 45 to 55, symptom reporting was low and significantly different from comparable Manitoban and Massachusetts samples (Avis et al. 1993). Commonly reported symptoms included shoulder stiffness, headaches, lumbago, chilliness, aches and pains in the joints, and feelings of numbness. Only 10 percent of the sample, as opposed to 31 percent and 35 percent in Manitoba and Massachusetts, respectively, had experienced a hot flash in the two weeks prior to answering the questionnaire (Lock 1993). Night sweats, re-

ported by only 4 percent of the Japanese sample as opposed to 20 percent in Manitoba and 12 percent in Massachusetts, were very infrequent (Figure 1). When peri- and postmenopausal women were asked if they had ever experienced a hot flash, 25 percent of Japanese women answered in the affirmative, whereas 75 percent of both Canadian and American women concurred. The Japanese word kénenki, usually translated into English as menopause, does not convey the same meaning; rather, it is similar to the older concept of the climacteric—that is, it is understood as a long, gradual process to which the end of menstruation is just one contributing factor. The term konenki was deliberately created at the beginning of the twentieth century, when Japanese physicians were in close contact with German colleagues. Most Japanese respondents in the study placed its timing at age forty-five or even earlier, lasting until nearly sixty. One quarter of the questionnaire respondents who were postmenopausal and had ceased menstruation for over one year reported no sign of ko6nenki. This strongly suggests that it is important, before creating questionnaires, to establish just what is conveyed by local terminology.

A second difficulty arose with the research in Japan because, as is the case in many other societies, no word exists in Japanese that refers uniquely and specifically to the hot flash, even though Japanese is a language in which very fine discriminations can be made in connection with bodily states. This absence of a linguistic marker strongly supports the idea that the so-called vasomotor symptoms, including the hot flash and night sweats, are not so troubling that they become central to the narrative about the end of menstruation and reproductive life. Those relatively few Japanese women who experience hot flashes have to convey this experience by using a common colloquial expression that conveys the sensation of suddenly becoming hot; alternatively, they complain of nobose—a term used to express the sensation of a sudden rush of blood to the head, associated with vertigo and dizziness—while others use /oteri, more commonly used to comment on the flushed faces many East Asians

212 Margaret Lock experience when imbibing alcohol. In other words, there is no specific term that designates a hot flash despite the presence of highly nuanced discriminators for body states in the Japanese language in general, and none of the available terms are gendered—men use these words as often as women do. Five years ago, the English term “hot flash” was imported into Japanese, but hotto furashu has not caught on and is used by very few women indeed. Over 40 percent of the Japanese women interviewed in the 1980s

agreed with the statement made by a Kyoto factory worker that “k6nenki starts at different ages depending on the person. Some start in their late thirties, and some never have any symptoms; they don’t have konenki at all.” The term shdégai (ill effects) has to be added to konenki (“change of life”) before most women start to think in terms of symptoms that could be thought of as distressing. Another finding at that time was that over 60 percent of the women in my study had never talked with a doctor about menopause, and only 2.7 percent were taking HRT as opposed to over 8 percent in the United States. When over one hundred women were interviewed in their homes

about the physical symptoms that they associated with konenki, nearly 80 percent of the responses were along the following lines: I’ve had no problems at all, no headaches or anything like that.... I’ve

heard from other people that their heads felt so heavy that they couldn’t get up. A few of my friends complain that they don’t exactly

have pain, but that they just feel generally bad.... I started to have trouble sleeping when I was about 50; that was konenki, I think. Some people have dizziness, headaches, stiff shoulders, and aching joints.... In my case, my eyesight became weak. Some people get sensitive and have headaches.

A small number of women, 12 in 100, made statements such as the following: “The most noticeable thing was that I would suddenly feel hot; it happened every day, three times or so. I didn’t go to the doctor or take any medication. I wasn’t embarrassed, and I didn’t feel strange. I just thought that it was my age.”

Creating the Discourse of K6nenki The end of menstruation has been recognized for many hundreds of

years in Sino/Japanese medicine as an occurrence that can leave “stale blood” in the body, the cause in some women of numerous nonspecific symptoms that often last a few years, including dizzi-

The Final Disruption? 213 ness, palpitations, headaches, chilliness, stiff shoulders, a dry mouth, and so on (Nishimura 1981). It was believed that many other events also produce stale blood and associated non-specific symptoms, and no specific term was created to gloss discomfort associated with the end of menstruation. Toward the end of the nineteenth century, Japanese medicine, under the influence of German medicine, created

the term k6nenki to convey the European concept of the climacterium. Hideo Nishimura (1981) has suggested that kOnenki could, until recently, be used to refer to all of the life-cycle transitions, both male and female, regardless of age. This interpretation is very close to the meaning given to the term climacterium as it was used until the middle of the nineteenth century in Europe. Contemporary Japanese has no term in everyday language that expresses the event of the end of menstruation, although there is, of course, a technical term, much as menopause was a technical term in English and rarely used in daily parlance until as recently as forty years ago. Part of turn-of-the-century German discourse about the climacterium that made good intuitive sense to the Japanese medical world was the concept of the “autonomic nervous system.” This idea, when first clearly articulated in 1898, caused a stir in medical circles everywhere (Sheehan 1936) but perhaps particularly so in Japan, where it “fitted” with the holistic physiological approach characteristic of Sino/Japanese medicine. Later, in the 1930s, when a close association

was postulated between the endocrine system and the autonomic nervous system (Sheehan 1936), Japanese physicians comfortably adopted this idea and postulated a connection between k6nenki and disturbances in the autonomic nervous system, an association that the majority of Japanese physicians and women accept today (Lock et al. 1988; Rosenberger 1992). The dominant discourse in Japan is one in which distress is not linked directly to a decline in estrogen levels but is said to be due to a destabilization of the autonomic nervous system. Both sexes are vulnerable, but women are thought to be more so than men because of the added impact of declining estrogen levels.

Another factor that no doubt worked in Japan against the construction of a narrowly focused discourse on the aging ovary and declining estrogen levels was that Japanese doctors, unlike their Western counterparts, had practiced little surgery prior to the twentieth century, a specialty disparaged by the powerful, physiologically oriented herbalists of the traditional medical system. Furthermore, anatomy, as conceived in Enlightenment medical discourse in Eu-

rope, had relatively little impact in Japan until the twentieth cen-

214 Margaret Lock tury, and autopsies and dissection were not widely practiced. Japanese gynecologists, therefore, did not have first-hand experience of removing and dissecting many hundreds of ovaries as was the case

for many late nineteenth-century European and North American gynecologists (Laqueur 1990), and their “gaze” remained predominantly physiologically rather than anatomically oriented. One other result of the emphasis given in Japan to physiological changes associated with konenki has been that until recently, among those few who consult with a doctor at this stage of the life cycle, they usually see an internist and not a gynecologist, since gynecology is primarily a surgical specialty. Taken together, these differences have ensured that the discourse on kOnenki is markedly different from that about menopause in North America. Stiff shoulders, headaches,

ringing in the ears, tingling sensations, dizziness, and so on are the symptoms that form the core of the kOnenki experience. This is an experience that is also in part contingent upon “local” biology, since hot flashes and other so-called vasomotor symptoms assumed to be characteristic of menopause occur relatively infrequently and are in any case often rather mild (Lock 1993, 2001). It is evident to most Japanese gynecologists that kOnenki is not the same thing, either conceptually or experientially, as menopause. The more than thirty physicians I interviewed in Japan in the 1980s were of the opinion that hot flashes are infrequently experienced by Japanese women and in any case cause little distress. More than one gynecologist inquired as to why “Western” women are so disturbed by hot flashes. As the hot flash is not the key signifier of distress at konenki and few women have, until recently, routinely visited doctors in connection with the end of menstruation, there has been relatively little incentive for Japanese doctors to prescribe hormone replacement therapy for symptom relief.

The Medical World and K6nenki In Japan, primary-care obstetrical and gynecological practice for the most part falls outside of the socialized health care system. Individual physicians very often own and run small hospitals where their income is derived largely from deliveries, abortions, and minor surgery. However, over the past two decades, gynecologists have found their medical practices less lucrative than formerly because many women now prefer to have their babies in tertiary care facilities, and

the abortion rate is decreasing due to a more sophisticated use of

The Final Disruption? 215 contraception. Given the economic pressures under which many gynecologists in private practice now find themselves, some of them have set up counseling services for middle-aged women, while others have written books and articles on the subject for popular consumption. Despite these changing practices and the presence of an aggressive pharmaceutical industry in Japan, relatively little use is made of HRT, which continues to be prescribed less frequently than herbal medications (Japan Pharmaceutical Manufacturers Association 1990). Japanese physicians keep abreast of the medical literature pub-

lished in the West, and as one would expect in a country actively dedicated to preventive medicine, there might be considerable incentive to prescribe HRT for postmenopausal women. Once again, biology plays a part, because mortality from coronary heart disease for Japanese women is about one quarter that of American women (WHO 1990), and, although Japanese women become osteoporotic twice as often as Japanese men, nevertheless this is approximately half as often as in North America (Ross et al. 1995). These figures, combined with a mortality rate from breast cancer about one quarter that of North America, have meant relatively little pressure for Japanese gynecologists to enter into the international arena of debate about the pros and cons of long-term use of HRT, something about which many are, in any case, decidedly uncomfortable because of a pervasive concern about iatrogenesis. The first line of resort for Japanese doctors when dealing with healthy, middle-aged women is usually to encourage good dietary practices and plenty of exercise.

For those with troubling symptoms, herbal medicine is commonly prescribed, even by gynecologists (Koyama 1993; Lock 1993). Belatedly, there are a steadily increasing number of gynecologists who believe their patients should take HRT, albeit at much lower doses and usually for a much shorter time period than has been customary in North America and Europe until recently.

Politics of Japanese Aging Japanese women have not traditionally been conceptualized in opposition to men but in a complementary relationship, particularly in terms of family life. Even when elderly, women were not, until recently, rendered peripheral but served as vital links between the extended family and the ancestors. The bodies of middle-aged Japanese

women are not found wanting when compared to either men or

216 Margaret Lock younger women, nor is their age as such an anomaly. Today, their social position makes them a target for action—political rather than medical—and in order to bring this about, the current generations of 50- and 60-year-olds are constructed in popular discourse as dilferent from all the generations of properly disciplined and controlled Japanese women who went before them from time immemorial. It is commonly put forth that middle-class Japanese women today have too much leisure time, and it is assumed that these “lazy” women are the ones who will complain the most at the end of reproductive life because they have time on their hands. The reality, however, is that very large numbers of middle-aged women in Japan are employed (although the majority are officially designated as part time and receive no benefits) and, in addition, work exceptionally hard as caregivers for their elderly parents and parents-in-law. Not surprisingly, many of them worry about their strength and continued overall good health much more than about the end of menstruation, because so many find themselves in positions of enormous family responsibility (Lock 1993). The 1980s research showed that middleclass women did not experience more symptoms than blue-collar workers or women engaged in farming, belying the myth of indolence. Furthermore, although concerned about physical decline in the future and the consequences for their families, the majority of these women thought that medicalization of aging was inappropriate and likely to bring about unwelcome consequences in the form of iatrogenesis.

I returned to Japan in early 2003, to carry out a brief follow-up study, shortly after the WHI trial had been stopped in America. The first surprise was to have several Japanese gynecologists tell me that they did not intend to pay much attention to the results of the US trial because the bodies of American and Japanese women are dilferent, and therefore the findings are not relevant to their clinical practice. They informed me that they had recently started their own large-scale clinical trial. As noted above, Japanese gynecologists had always limited their use of HRT to low-dose prescriptions for a duration of only a few years (Lock 1993), and in justification of this practice had drawn upon a supposed Japanese/Other distinction with respect to women’s bodies. Paradoxically, the practices of North Amer-

ican specialists have now come more in line with those Japanese physicians had been using all along. The Japanese Menopause Society was founded in the early 1980s, and in the ensuing years, for the first time, menopause was given a great deal of media coverage in Japan. Much of this coverage was

The Final Disruption? 217 similar to that appearing in the North American media in that it emphasized what a difficult time kOnenki could be and reported on individual case studies in which, in more than one instance, women apparently had been unable to get out of bed for weeks on end. The dominant understanding among Japanese women that konenki is a “natural process” and simply part of aging was roundly challenged by this media exposure. Even so, Japanese doctors had an uphill battle ahead of them. First, as is well known, the contraceptive pill was

not made available in Japan until 1999, and only then after long, contentious debate (Ogino 2003). This prohibition has had two longterm effects: Japanese women have never been accustomed to going routinely to gynecologists from a young age and, further, have a widespread resistance to taking what are regarded as powertul West-

ern drugs on a daily basis. Neither the Pill nor HRT appeal to the majority of Japanese women. Second, the dominant ideology until well into the 1980s, that women should “ride over” k6nenki and that only weak-minded women allowed themselves to be disrupted by this life-cycle transition, has left its mark. Doctors have had to work hard to counter this stereotype in order to have women think of k6nenki as an important transition best managed by the medical profession; it is abundantly clear that most women still do not find it necessary to see

their doctor, not so much because they are concerned about being stereotyped as lazy, but because the majority do not have a difficult time and do not experience troubling symptoms (Melby 2005a; Lock unpublished data). Many of the women I interviewed in 2003, assumed that other women may well have a difficult time, as the media

informs them, but were adamant that they themselves were fortunate in this respect and had experienced no obvious symptoms or only a few mild ones. Melissa Melby, a biological anthropologist, has recently completed

three years of research in Japan involving 140 women residing in two communities (2005b). She made use of both survey research and qualitative methods compatible with my earlier work in Japan and has also drawn bloods and carried out biological measurements. Based on inquiries about symptom reporting during the two weeks

prior to answering the questionnaire, Melby found that hot-flash prevalence is 22.1 percent. This is higher than the prevalence of twenty years earlier but comes as no surprise, given the extensive efforts at medicalization of middle-aged women in Japan and, thanks to the media, a raised sensitivity among women about konenki as a health-related matter. However, statistically, this rate of symptom

218 Margaret Lock reporting continues to be significantly lower than in North America. Moreover, as noted above, few of the women who report vasomotor symptoms find them troubling, and many state that they disappear after a month or so. Among the 62 women I interviewed, only 13 had been to a doc-

tor about konenki, and only 2 women, aside from those who had hysterectomies, are on HRT. Konenki continues to be understood by almost everyone as distinct from and encompassing the end of men-

struation—the idea of a male equivalent to kOnenki is strong and supported by numerous articles in the media. The myth of the indolent housewife who is particularly vulnerable to difficulties at k6-

nenki survives intact, and similarly, an assumption persists that people with a “strong mind” will ride over this life transition. The results of the biological measures taken by Melissa Melby are not yet available. Of course neither of us believe that the ultimate “truth”

of the matter lies with blood levels of isoflavins and soybean consumption, but these findings will be of great interest nevertheless.

Culture and Local Biologies In addition to the research discussed above, anthropologists and other researchers have consistently shown that the incidence of vasomotor symptoms, notably hot flashes and night sweats, are not distributed equally between or among populations of peri- and postmenopausal women. For example; Beyene (1989), on the basis of research among rural Mayans living in the Yucatan, Mexico, where women have numerous pregnancies and extended cycles of amenorrhea associated with prolonged lactation and malnutrition, found no reporting of either hot flashes or of sweats. This was in contrast to the Greek peasant women who constituted the second part of her study, whose pattern of symptom reporting was similar to that of northern Europe. Beyene concluded that menopause should be in-

terpreted as a biocultural event and emphasized that variables to take into consideration include diet and reproductive history. Research carried out in India, Indonesia, among Africans living in Israel, in Taiwan, Hong Kong, Singapore, China, Korea, Thailand, and Malaysia all reveal low reporting of hot flashes and night sweats, although there is considerable variation in incidence among these studies (see Lock 2002, for a summary of this research). The response of some researchers has been to suggest that the women in these studies, in effect, bias the research findings. They argue that because

The Final Disruption? 219 individual responses to menopause are culturally dependent, inattention to hot flashes is essentially learned behavior. For example, M. J. Boulet and colleagues, on the basis of research in seven SouthEast Asian countries (1994), showed that headaches, dizziness, anxiety, irritability, and other nonspecific symptoms were commonly associated by the women in their study with the menopausal transition, as they are in Japan. Boulet and her associates argued that such symptom reporting should be understood as “a form of communication” on the part of women and speculated that vasomotor distress may be “translated” by women into culturally meaningful nonspecific symptoms associated with feelings of psychological distress. The assumption in making such an interpretation is that when subjective reporting does not coincide with anticipated findings, women are, in effect, being duped by their language and culture. In parts of the Middle East and Africa, some research suggests symptom reporting may be higher than in North America (Obermeyer 2000)—could it be that these women, too, are being deceived by their culture?

Much better standardization of research methodologies is called for before firm conclusions can be reached on the basis of studies such as those cited above. Sample sizes are often small, and some are drawn from clinical populations, introducing considerable bias. Sensitivity to the complexity of linguistic expressions and translation of bodily terms across languages is often absent. Women who have undergone surgical menopause are not always placed in a separate category for the purposes of analysis. Further bias is introduced if, as is often the case, symptom reporting by women is not correlated with their actual menopausal status (something that is particularly difficult to establish where multiparity is the norm). Very often, women are asked to recall what may have happened five or even ten years previously. Despite these serious shortcomings, taken together, this research strongly suggests that considerable variation exists in the reporting of vasomotor symptoms across cultures that cannot be explained away as due to culturally conditioned inattention. It is reasonable to speculate, for example, that with urban migration and education, women might experience hot flashes more frequently as a result of dietary changes or a more sedentary lifestyle. In addition, cultural expectations, local values, and language are also implicated. These findings strongly suggest that a coproduction of culture/ politics and biological diversity is at work (Lock 2001). The compar-

ative history of discourse and practices at the end of female repro-

220 Margaret Lock ductive life in North America and Japan are testimony as to the extent to which this coproduction is at work. Of course, Iam not arguing for an essentialized biological difference, any more than for a universal biology. Rather, what I believe should be recognized is biological diversity among and within populations of women, wherever they reside. This diversity is such that it influences, but by no means determines, how women experience the end of menstruation and how local ideologies about this stage of the life course is construed. Conversely, medical interests, biases, and technologies, all of

which change over time, as well as political indifference to or concern about female aging, frequently obliterate the possibility of acknowledging a plurality of subjectivities and physical experiences at the end of reproductive life. Dominant ideological discourse is not based on widely supported scientific evidence nor on reports about the actual experience of large samples of ordinary women as they go about their everyday lives. Rather, as this chapter shows, it is almost without exception constructed from unexamined assumptions about female aging and what this signifies not merely for individuals but for society at large.

Conclusion The historical trajectory of the past twenty years makes it clear that the process of medicalization is complex and unpredictable. More generally, it is abundantly evident that analyzing the reactions of women to medical and technological innovation primarily in terms of responses of passive acceptance or, alternatively, of self-conscious resistance, is inadequate, as the work of Caroline Bledsoe (2002), Susan Greenhalgh (1991), Marcia Inhorn (2003), Patricia Kaufert (1998), Rayna Rapp (1999), and many others have shown. Historicizing and contextualizing the process of medicalization is crucial to understanding its effects. Such an approach unveils political interests and culturally informed values, including those embedded in medicine and, in the case of the end of reproductive life, has made it abundantly clear that for the majority of women, this transition is

not the major disruption dominant ideologies would have us believe. At the same time, social-science research can make plain the positive aspects of medicalization—many thousands of women have experienced relief from troubling symptoms that only medication can provide. Above all, through reflection on the findings of critical comparative research—quantitative, qualitative, and ethnographic—

The Final Disruption? 221 the twin dangers of essentializing women’s bodies and of casting as the exotic Other those who do not fit the mold of biomedicine’s assumptions are made abundantly clear.

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ABBREVIATIONS

ACOG American College of Obstetricians and Gynecologists

ADA Americans with Disabilities Act (1975) AFCARS The Adoption and Foster Care Analysis and Reporting System

ARTs assisted reproductive technologies

BV Bacterial vaginosis

BWHC Boston Women’s Health Book Collective

CDC Centers for Disease Control and Prevention CMENAS Center for Middle Eastern and North African Studies

D&C Dilation and Curettage DES Diethylstilbestrol

DS Down Syndrome

HRT hormone replacement therapy ICSI intracytoplasmic sperm injection IDEA Individuals with Disabilities Education Act (1975) INSEE Institut National de Statistique et Etudes Economiques

IUD Intrauterine Device

IRWG Institute for Research on Women and Gender

IVF in vitro fertilization LBW low birthweight NAIC National Adoption Information Clearinghouse NAMS North American Menopause Society NICU Neonatal Intensive Care Unit

NIH National Institutes of Health PGD preimplantation genetic diagnosis PID Pelvic Inflammatory Disease UNFPA United Nations Population Fund UNICEF — United Nations Children’s Fund

WHI Women’s Health Initiative WHO World Health Organization

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CONTRIBUTORS

Caroline H. Bledsoe is the Melville J. Herskovits Professor of African Studies and a professor of anthropology at Northwestern University. In West Africa, she has studied topics of marriage, fertility, contraception, child fosterage, and aging, several of which she has followed up with US counterpart studies. Her latest study, “Transnational Vital Events: Birth, Law, and Migration between Africa and Europe,” is based at the Max Planck Institute for Demographic Research, in Rostock, Germany. C. H. Browner is a professor of psychiatry and biobehavioral sciences at the UCLA David Geffin School of Medicine and in the Department of Anthropology at UCLA. Internationally known for her studies of reproductive health decision-making processes, particularly those pertaining to fetal diagnosis, her work has been funded by the National Science Foundation, the Centers for Disease Control, the National Institutes for Health, and numerous private foundations. Her current project concerns the use of genetics in neurologists’ clinical practices and the broader social consequences of decoding the human genome.

Faye Ginsburg is a professor of anthropology and director of the Center for Media, Culture and History at New York University. She is the author of Contested Lives: The Abortion Debate in an American Com-

munity (1989, 1998) and the recipient of four awards. Her most recent book, an edited collection, is Media Worlds: Anthropology on New Ter-

rain. Since 1999, Dr. Ginsburg and Dr. Rayna Rapp have collaborated on a series of articles examining the relationship between new genetic technologies and disability consciousness. Most recently, they have focused on the cultural dimensions of living with disability and the critical role played by kinship and media in expanding recognition and rights for the disabled. They are launching research on the

228 Contributors multiple vectors that have created a “cultural epidemic in learning disabilities” in contemporary postwar America. Harold D. Grotevant is Distinguished University Teaching Professor of Family Social Science and an adjunct professor of child psychology at the University of Minnesota. His research focuses on relationships in adoptive families and on identity development in adolescents and young adults. His work has resulted in over one hun-

dred articles published in professional journals and several books, including Openness in Adoption: Exploring Family Connections (with Ruth

McRoy, Sage Publications, 1998). In 2005, he received new funding from the National Institute of Child Health and Human Development, the National Science Foundation, and the William T. Grant Foundation, to continue the longitudinal research project began with Ruth

McRoy in the mid-1980s on relationships in adoptive families, in which the study’s children, first seen in middle childhood, are now young adults in their twenties. Marcia C. Inhorn is the William K. Lanman Jr. Professor of Anthropology and International Affairs in the Department of Anthropology and the Whitney and Betty MacMillan Center for International and Area Studies at Yale University. There, she also serves as Chair of the Council of Middle East Studies. Before coming to Yale in 2008, Inhorn was a professor of medical anthropology at the University of Michigan, and president of the Society for Medical Anthropology of the American Anthropological Association (AAA). A specialist in Middle Eastern

gender and health issues, Dr. Inhorn has conducted research on the social impact of infertility and assisted reproductive technologies in Egypt, Lebanon, the United Arab Emirates, and Arab America over the past 20 years. She is the author of three books on the subject, Local Babies, Global Science: Gender, Religion, and In Vitro Fertilization in Egypt, In-

fertility and Patriarchy: The Cultural Politics of Gender and Family Life in Egypt, and Quest for Conception: Gender, Infertility, and Egyptian Medical Traditions, which have won the AAA's Eileen Basker Prize and the Di-

ana Forsythe Prize. She is also the editor of six books, including Anthropology and Public Health: Bridging Differences in Culture and Society and Infertility around the Globe: New Thinking on Childlessness, Gender, and Re-

productive Technologies. With Soraya Tremayne and David Parkin of the University of Oxford, she co-edits this Berghahn series on Fertility, Re-

production and Sexuality.

Linda Layne is Hale Professor of Humanities and Social Sciences and a professor of anthropology at Rensselaer Polytechnic Institute. Her publications include Motherhood Lost: A Feminist Perspective on Preg-

Contributors 229 nancy Loss, the childbearing loss chapter of Our Bodies, Ourselves, Consuming Motherhood, and Transformative Motherhood: On Giving and Getting in a Consumer Culture. She is also coproducer of a television series

on pregnancy loss, “Motherhood Lost: Conversations,” and the proud mother of two fine sons. Margaret Lock is Marjorie Bronfman Professor in Social Studies in Medicine and is affiliated with the Department of Social Studies of Medicine and the Department of Anthropology at McGill University. Her monographs include East Asian Medicine in Urban Japan; Encounters with Aging: Mythologies of Menopause in Japan and North America

and Twice Dead: Organ Transplants and the Reinvention of Death. Her

current research is concerned with the production of postgenomic biology and its translation and circulation among clinics, families, and society at large, with particular emphasis on Alzheimer’s disease.

Rayna Rapp is a professor of anthropology at New York University, developing the Cultures of Biomedicine perspective. She is the author of Testing Women, Testing the Fetus: The Social Impact of Amniocentesis

and the recipient of four awards. Since 1999, Dr. Rapp and Dr. Faye Ginsburg have collaborated on a series of articles examining the relationship between new genetic technologies and disability consciousness. Most recently, they have focused on the cultural dimensions of living with disability and the critical role played by kinship and media in expanding recognition and rights for the disabled. They are launch-

ing research on the multiple vectors that have created a “cultural epidemic in learning disabilities” in contemporary postwar America.

Carolyn Sargent is a professor of anthropology at Southern Methodist University and a research fellow at the University of Paris 13 (CRESP) and the University of Paris 5 (POP-INTER). She is the editor of “Medical Anthropology in the Muslim World” (Medical Anthropology Quarterly), co-editor of Medical Anthropology: Contemporary Theory

and Method, and author of Maternity, Medicine and Power. Her research

interests lie in the areas of global health, gender and reproduction, and bioethics. She has conducted fieldwork in West Africa and the Caribbean and is currently engaged in a long-term study of West African immigrants in France. Rachel F. Scherrer is a graduate student in Northwestern University’s Department of Anthropology. Her research interests include reproduction, health care, pharmaceuticals, gender, globalization, and political economy. She is investigating the use of prescription contraceptives in the US.

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INDEX

A African American children, 135, abortion, 27-28, 102, 103-4, 150, 139n3

152 Agenda for Research on Women’s

ADA (Americans with Disabilities Health for the 21st Century

Act), 100 (National Institutes of adoption Health), 5 as a challenge to normal aging, female. See female aging reproduction, 136-37 AIDS, 8, 21, 22-23, 186

changes in the US in, 124-25 Americans with Disabilities Act

of children from foster care, (ADA), 100

125, 126-27, 138 amniocentesis

and concept of family, 137-38 and abortion, 150, 152

and cultural complexities, complications from, 57, 150

134-36, 138 fear of, 151, 159

disruptions from, 123-24 genetic counseling and, 10, 153,

domestic voluntary 154

138 Angola, 52

relinquishments, 125, 127-28, anesthesia, 16

international, 125, 126, 138, 186 anthropology, 4-5, 9, 18, 19, 30

Islam and, 186 Armstrong, Penny, 89-90 open. See open adoption Asia, 21, 26, 126, 186, 217. See relative, 125, 127, 138 also Japan

restrictions, 186 assisted reproductive technologies

adoptive kinship networks, (ARTs). See also in vitro

128-34, 137-38 fertilization (IVF)

Africa. See also West African as a class-specific treatment,

migrants 102, 187, 195

adoption in, 186 globalization of, 186-87 female circumcision in, 26—27 growth in the use of, 98 infertility in, 184 Islam and, 184, 187-95

medicalization of women’s in Israel, 28-29, 187 reproduction in, 15, 17 local moralities and, 187-88 reproductive risks in, 51-54, 71n7 Awake!, 50, 59-60

232 Index B home births, 51, 85, 86, 89-90,

bacterial vaginosis (BV), 7 92-93 Basu, A. M., 148 in India, 19 Becker, Gay, 30 medicalization of, 14-17, 48-49,

Belly Beats, 83 58-60, 101

Benin, 17 natural, 16, 55-58, 62, 84, 85 Bennett, Neil, 106—7 normal, 55-58 Bérubé, Michael, 110 prepared, 80-81

Beyene, Y., 218 risks, 51-55, 71n7

Biddlecom, Ann E., 147 social model of, 93, 94—95 biological diversity, 218-20 during teenage years, 14

biopower, 12, 148, 162 women’s control of, 59-65,

birth. See childbirth 67-70, 72n19

Birth as an American Rite of Passage Childbirth Without Fear (Dick-Read),

(Davis-Floyd), 14 84 birthing centers/suites, 51, 56, 62, child-free living, 186 84 child mortality, 52-53, 71n7 Birthing the Nation (Kanaaneh), 25 Child Survival Initiative, 8

birth mothers, 129-34. See also China, 21, 26, 126, 217

adoption Choosing Unsafe Sex (Sobo), 23

Birth on the Threshold (Van Hollen), climacterium, 203-4, 213

19 Colonial Lexicon of Birth Ritual,

birth plans, 58, 65-67 Medicalization, and Mobility in

Blanc, Ann K., 159 the Congo, A (Hunt), 15-16

Bledsoe, Caroline, 220 Conceiving the New World Order blood tests, 83, 102, 150, 151 (Ginsburg & Rapp), x, 26,

Boddy, Janice, 18-19 183, 187

bonding, 59-60 Congo, 15

Boulet, M. J., 219 Conley, Dalton, 106—7

breast cancer, 202, 208, 215 Contested Lives (Ginsburg), 27

Burke, Chris, 111 contraception. See Islam; West BV (bacterial vaginosis), 7 African migrants Cote-Arsenault, Denise, 89

C Count Us In (Kingsley & Levitz),

cancer, 202, 207, 208, 215 110

Carter-Long, Lawrence, 109-10 crack cocaine, 23-24 Centers for Disease Control and Croll, Elisabeth, 21 Prevention (CDC), 7

cervical electrocautery, 18 D

childbirth 70n1

Cesarean sections, 61-63, 80 Davis-Floyd, Robbie, 14, 51, 55, in birthing suites/centers, 51, D&C (dilatation & curettage), 82,

56, 62, 84 84-85, 95n9 birth plans, 58, 65-67 Death Without Weeping (Scheperclasses on, 81, 82 Hughes), 10-11

cultural depiction of, in the US, De Beauvoir, Simone, 203

12-13, 68, 69 De Lee, Joseph B., 54, 70

Index 233 Democratic Republic of the Congo, female aging. See also hormone

15 replacement therapy (HRT) Deutsch, Helene, 203-4 as a biocultural event, 218—20 developing countries in Japan, 210-18

infertility in, 184-85, 187, 196 medicalization of, 13, 200-209 reproductive risks in, 49, 51-54, Female Circumcision Controversy, The

70, 71n8& (Gruenbaum), 26-27

Dick-Read, Grantly, 84 fertility. See infertility

dilatation & curettage (D&C), 82, fetal diagnosis. See genetic testing

84-85, 95n9 fetal dopplers, 83 disability Figueroa-Perea, Juan Guillermo, civil rights and, 99, 100, 117 149

impact of, in families, 98-101, Fit Pregnancy, 50-51, 59, 62-63,

103, 104, 105, 108-9, 116 69, 72n17

in the media, 99, 101, 109-16, foster care, 108, 125-27, 138

117, 118n5 Foucault, Michel, 12

stratification of, 101, 103-9, 110 France

domestic voluntary immigration policies, 166-67, 179 relinquishment adoption, 125, public hospitals in, 177, 178

127-28, 138 West African migrants in. See doulas, 69-70, 90-93 West African migrants Downer, Carol, 83

Down Syndrome, 103-4, 110-11 G Gambia, 53, 54

E Gaskin, Ina May, 85, 91, 96n10 ectopic pregnancy, 82, 95n6 genetic counseling

Egypt, 17, 20, 29, 188-90, 191-92 and Mexican migrant women in Elusive Embryo, The (Becker), 30 the US. See Mexican migrants

emotional attachment, 59-60 as reinforcing male authority, Encounters with Aging (Lock), 10, 160-62

11, 12 role in genetic testing, 151, 153,

Endangered Daughters (Croll), 21 154

endocrine replacement therapy, genetic testing

201-2 and gendered ambivalence,

epidural anesthesia, 16 153-58

estrogen replacement therapy gendered decision-making

(ERT), 206-7 about, 158-60

Exceptional Parent, 106 as inherently problematic, 150 and Mexican migrant women in F the US. See Mexican migrants families role of genetic counseling in,

concept of, in adoption, 137-38. 151, 153, 154

See also adoption social and cultural factors in,

disability in, impact of, 98-101, 102, 103-4

103, 108-9, 116 Gerrits, Trudie, ix

Fast Lives (Sterk), 23-24 Ginsburg, Faye, vii, x, 26, 27, 183,

Featherstone, Mike, 201 187

234 Index Global Programme on AIDS, 8 Indonesia, 190, 218

Gosden, Roger, 205 infant mortality, 11, 52, 53

Gramsci, Antonio, 16 infertility. See also assisted Greene, Margaret E., 147 reproductive technologies Greenhalgh, Susan, 220 (ARTs); in vitro fertilization

Gruenbaum, Ellen, 26—27 (IVF)

gun control, 24-25 adoption and, 123, 186

Gutmann, Matthew C., 147-48 global importance of, 30, 183,

gynecology, 8, 48, 206-8, 210, 184, 185-86, 195-96

214-15 male, 184, 188, 191-95, 196

prevention of, 196 H In resource-poor countries, Haraway, Donna, 205 17-18, 184-85, 187, 196

Having a Baby, Naturally (O'Mara), treatment of, as a right, 57-58

62 Infertility and Patriarchy (Inhorn),

health insurance, 57, 66, 102, 135 20, 22

heart disease, 206, 215 Inhorn, Marcia C., 17-18, 20, 22,

Hepworth, Mike, 201 29, 220

HIV virus, 1, 21, 23, 186, 195 In Labor (Rothman), 80 homebirth attendants, 69-70, 86, insurance, health, 57, 66, 102, 135 88-89, 90-93. See also midwives international adoption, 125, 126,

home births, 51, 85-86, 89-90, 138, 186

92-93 intracytoplasmic sperm injection

hormone replacement therapy (ICSI), 188, 191-95

(HRT), 201-2, 206-10, 215, in vitro fertilization (IVF). See also

216, 217 assisted reproductive

hot flashes, 208, 211-12, 214, technologies (ARTs)

217, 218-19 as a Class-specific treatment,

Howe, David, 127 102, 187

Hunt, Nancy Rose, 15-16 in Egypt, 29, 189-90

IIceland, in Iran, 32n7, 194 52 Islam and, 189-91, 192-93 globalization of, 186-87

ICSI (intracytoplasmic sperm in Israel, 28-29, 187

injection), 188, 191-95 in Lebanon, 32n7

IDEA (Individuals with Disabilities risks, 102—3

Education Act), 100 Iran, 32n7, 184, 190, 191, Ideologies and Technologies of 193-95 Motherhood (Ragone & Twine), Islam

108-9 and adoption, 186 immigrants. See Mexican migrants; and assisted reproductive

West African migrants technologies (ARTs), 184,

India, 19, 21, 26, 190, 218 187-95 Indian Child Welfare Act, 135 and contraception, 169-70, individuality, forms of, 69 174-76 Individuals with Disabilities and ijtihad, 190, 194

Education Act (IDEA), 100 Israel, 25, 28-29, 187, 188, 190

Index 235 J Lying-In (Wertz & Wertz), 93

Japan, 11, 210-18 Lyon, Janet, 110 Japanese Menopause Society, 217

Jewish Halakhic law, 28-29, 187 M

John, Prince, 111-12 MacDowell, Andie, 114, 115

Jordan, 94, 190 Making Pregnancy Safer Initiative,

K Malawi, 52 71n8

Kahn, Susan Martha, 28-29, 187 Malaysia, 29, 190, 218

Kanaaneh, Rhoda, 25 male infertility, 184, 188, 191-95,

Kaufert, Patricia, 220 196

Keat, Russell, 201 Malian migrants, 166, 167. See also Khamanei, Ali Hussein, 190 West African migrants

Kids Like These, 110 Martin, Emily, 12-13

Kingsley, Emily, 110 Masterpiece Theater, 111 Kingsley, Jason, 110 maternal mortality, 51-52, 53,

kinship 71n7

adoptive kinship networks, Maternity, Medicine, and Power

128-34, 137-38 (Sargent), 17

and disability, 98-101, 103, 104, McLean, Sandy, 88

105, 108-9, 116 media, disability in the, 99, 101,

Kitzinger, Sheila, 86 109-16, 117, 118n5 Kleinman, Arthur, 187 medicalization

konenki, 211, 213-15, 217, 218 of female aging, 13, 200-209

Koop, C. Everett, 150 of women’s reproduction,

13-18, 48-49, 58-60, 101 L Melby, Melissa, 217, 218 Landsman, Gail, 107-8 men

Latin America, 186 and aging in Japan, 210, 213 Lawson, Laurel, 114 research on reproductive Layne, Linda L., 30, 94, 108 capacities of, 9, 10, 147-48 LBW (low birth weight) newborns, menopause. See also hormone

7, 102-3, 104, 106—7 replacement therapy (HRT)

learning disabilities, 103, 104, 105, as a biocultural event, 218—20 107, 111-12. See also disability in Japan, 11, 210-18

Lebanon, 32n7, 188, 189, 190, medicalization of, 13, 200—209

191-93, 194 Mexican migrants

LePen, Jean-Marie, 166 gendered ambivalence about

Levitz, Mitchell, 110 genetic testing, 153-58 Life Goes On, 111 and gendered decision-making, Local Babies, Global Science (Inhorn), 158-60

29 overview of study on, and

local moralities, 27-29, 187-89 genetic counseling, 149-53,

Lock, Margaret, 10, 11, 12 158

“Lost Prince, The,” 111-12 Middle East

low birth weight (LBW) newborns, intracytoplasmic sperm injection

7, 102-3, 104, 106—7 in the, 188, 191-95

236 Index Islam and in vitro fertilization in Murderball, 118n5

the, 184, 187-91 Muslim Middle East. See Middle midwives East for home miscarriage and “My Flesh and Blood” (Swain),

stillbirth, 90-93 87-88

and lower rates of perinatal

mortality, 89 N natural birth and, 16, 61, 69-70, Nagle, Margaret, 112-14 73n20 Nams (North American

in non-Western countries, 18 Menopause Society), 208 and West African migrant National Front party, 166-67, 174 women in France, 171-76, National Institutes of Health

177, 180nn3—4 (NIH), 5—7

migration, transnational, 165, 177. National Women’s Health

See also Mexican migrants; Collective, 209 West African migrants Native American children, 135 Minnesota/Texas Adoption natural childbirth Research Project, 128-33 locations for, 62, 84, 85 miscarriage. See also pregnancy loss midwives and, 16, 61, 69-70,

amniocentesis and, 57, 150 73n20

and dilatation & curettage, 82, normal vs., 55-58

84-85, 95n9 nature

homebirth attendants for, 86, boundaries between culture

88-89, 90-93 and, 201, 202

occurrence of, in the US, 79 normality vs., 55-58 personal accounts of, 87-89, 91 professionalization of, 48-49,

preparing women for, 80-83, 58-60, 61, 71n8

86-89 Neil, Elsbeth, 127

psychological trauma of, 79, Niger, 52

86-88, 95n1 night sweats, 211, 218

Misgav Ladach technique, 61-62 NIH (National Institutes of

Modell, Judith, 138 Health), 5-7

molar pregnancy, 82, 95n5 Nishimura, Hideo, 213 moralities, local, 27-29, 187-89 non-normative bodies/minds. See

Morocco, 29, 190 disability mortality normality vs. nature, 55-58 child, 52-53, 71n7 North American Menopause

infant, 11, 52, 53 Society (NAMS), 208 maternal, 51-52, 53, 71n7

perinatal, 89 O Motherhood Lost (Layne), 94 obstetrics, 8, 47-49, 66, 67-70, Motherhood Lost (television series), 214

88-89 O’Donnell, Rosie, 114, 115

Mothering, 50-51, 69 Office for Research on Women’s

Mulgaonkar, Veena, ix Health, 5—7 Mullings, Leith, 7 O’Mara, Peggy, 62, 92 multiple high-order births, 102 Omran, Abdel R., 175

Index 237 open adoption prenatal genetic counseling. See as a challenge to normal genetic counseling

reproduction, 136-37 prenatal genetic screening. See and concept of families, 137-38 genetic testing

research on, 128—34 prepared childbirth, 80-81

Our Bodies, Ourselves, 16, 85-86 professionalization of nature, 48-49, 58-60, 61, 71n8

P professionalized patients, Pakistan, 190 63-65, 68 49, Palestine, 25 progesterone. See hormone

patriarchy, 19-22, 24 replacement therapy (HRT)

pelvic self-exams, 83 Putting Risk in Perspective (White),

perinatal mortality, 89 23 Pernick, Martin, 110

pharmaceutical companies, 200, Q

206-8, 209, 215 Qatar, 188, 190

Pickard, Lea, 161 Quest for Conception (Inhorn),

Pipes, Daniel, 22 17-18

placenta abruptio, 52 Qur’an, 186 placenta previa, 52, 64-65

Plath, David, 210 R

Poliakoff, Stephen, 111-12 race, stratification and, 22—24, 102,

polio, 112-13 106-7, 135-36, 138, 139n3 polygamy, 167, 168, 169, 174, 186 Radio, 118n5

post-reproductive female. See Ragone, Helena, 108-9

female aging Rapp, Rayna, vil, x, 10, 26, 27-28,

poverty, 6, 22, 23, 24, 135, 136 183, 187

preferential adopters, 123-24 Reitz, Miriam, 124—25, 126

pregnancy relative adoption, 125, 127, 138 ectopic, 82, 95n6 Reproducing Jews (Kahn), 28-29, and maternal mortality, 51-52, 187

71n7 Riding the Bus with My Sister molar, 82, 95n5 (Simon), 115-16 normal vs. natural, 56 Ringer, The, 118n5

social stratification and, 105-6 Roosevelt, Eleanor, 112-13

teen, 14 Roosevelt, Franklin Delano, pregnancy loss. See also miscarriage 112-13, 117

fears during, 91 Rothman, Barbara Katz, 80

home birth model for, 85-86,

92-93, 94-95 S 84-85, 94-95 71n8 prepared childbirth model for, Sargent, Carolyn Fishel, 17

natural childbirth model for, Safe Motherhood Initiative, 8,

80-83, 94-95 Scheper-Hughes, Nancy, 10-11

preparing women for, 86-89 Scholz, C., 151

social childbirth model for, 93—95 Senegalese migrants, 167, 168. See

stillbirths, 79-80, 86, 89-93 also West African migrants

238 Index Sesame Street, 110 U

Sheehy, Gail, 204 ultrasound, 83, 102, 150, 151 Shi’a Islam, 184, 190-91, 192-94 University of Michigan

Sierra Leone, 52 conference, ix—x Simmel, Georg, 49, 67, 68, 69

Simon, Rachel, 115-16 V Sobo, Elisa, 23 van Balen, Frank, ix social childbirth model, 93, 94—95 Van Hollen, Cecilia, 19

social pregnancy loss, 93-94 Verjaal, M., 151

social stratification Villepin, Dominique, 166 and disability, 101, 103-9, 110 voluntary relinquishment

pregnancy and, 105-6 adoption, domestic, 125, race and, 22-24, 102, 106-7, 127-28, 138 135-36, 138, 139n3

sonogram, 83, 102, 150, 151 WwW

spontaneous abortion. See Wali, Alaka, 7

miscarriage Warm Springs, 112-14

Station Agent, The, 118n5 Watson, Kenneth W., 124—25, 126

Sterk, Claire, 23-24 Wegar, Katarina, 135

stillbirths, 79-80, 86, 89-93. See Wertz, Dorothy C., 93

also pregnancy loss Wertz, Richard W., 93 Strathern, Marilyn, 201 West African migrants Stratification. See social interactions with French health

stratification providers, 171-74, 176-78,

stratified disability, 103-5 180nn3—4

stratified reproduction, 98, 187 migration to France, 166, 167-68

Strully, Kate, 106—7 religious beliefs on

Sudan, 18, 26—27 contraception, 174-76 Sunni Islam, 184, 189-90, 192 use of contraception, 169-71, Swain, Heather, 87-88 176, 179, 180n5

Sweden, 52 White, Renee, 23 White, Sarah, 161 T WHI (Women’s Health Initiative), teen pregnancy, 14 208, 216 Testing Women, Testing the Fetus Williamson, Gail, 110

(Rapp), 10 Woman in the Body, The (Martin),

Texas Adoption Research Project, 12-13

128-33 Wombs and Alien Spirits (Boddy),

Transformative Motherhood (Layne), 18-19

108 women. See also women’s health

transnational migration, 165, 177. aging and. See female aging See also Mexican migrants; cultural construction of bodies

West African migrants of, 12-13

tubal insufflation, 18 production of health by, 18-19

Turkey, 190 as professionalized patients, 49, Twine, Frances Winddance, 108-9 63-65, 68

Index 239 reproductive essentialization of, production of, by women, 18-19

7-11 and reproductive essentialization

Women, Poverty, and AIDS (Farmer, of women, 7-11

Connors, & Simmons), 23 state intervention in, 24—25

women’s health Women’s Health Initiative (WHI), biomedical hegemony over, 208, 216

15-18 World Health Organization, 56,

defining the boundaries of, 5—7 209

and local moralities, 277-29 Wozniak, Danielle, 108 and oppressive intersections in women’s lives, 22—24

patriarchy and, 19-22 Z

politics of, 26-27 zar, 18

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