DES daughters: embodied knowledge and the transformation of women's health politics

DES Daughters

DES Daughters K Embodied Knowledge and the Transformation of Women’s Health Politics

J Susan E. Bell

Temp le U niv e r sit y P r e ss • P h i l a d el p h i a

Temple University Press 1601 North Broad Street Philadelphia PA 19122 www.temple.edu/tempress Copyright © 2009 by Temple University All rights reserved Published 2009 Printed in the United States of America The paper used in this publication meets the requirements of the American National Standard for Information Sciences—Permanence of Paper for Printed Library Materials, ANSI Z39.48-1992 Figure 6.1: Photo by Ted Helfand. Still from the film A Healthy Baby Girl. Courtesy of Judith Helfand Productions. Figures 6.2, 6.3, and 6.4: Stills from the film A Healthy Baby Girl. Courtesy of Judith Helfand Productions. Library of Congress Cataloging-in-Publication Data Bell, Susan E. DES daughters: embodied knowledge and the transformation of women’s health politics / Susan E. Bell. p. cm. Includes bibliographical references and index. ISBN 978-1-59213-918-7 (cloth : alk. paper) — ISBN 978-1-59213-919-4 (pbk. : alk. paper) 1. €DES-exposed daughters. 2. €Women’s health services. 3. €Medical policy. 4. €Feminism—Health aspects. €I. Title. € RA1242.D48B45 2009 € 615'.766—dc22 € € € € € € € € € € € € € € € € € € € € € € € € € € € € € € 2009006203 246897531

For the daughters

Contents

Acknowledgments

ix

Introduction: Connecting Lives, Texts, and Social Change

1

1.╇A History of DES

15

2.╇Narratives and Lives: The Politics of Knowing for DES Daughters

30

3.╇ Becoming a Mother after DES

72

4.╇Remapping DES Bodies

97

5.╇Power, Knowledge, and DES

120

6.╇Healthy Baby Girls

147

Conclusion: Performing DES, Embodying a Health Movement

167

Notes

177

References

199

Index

211

Acknowledgments

I

am grateful to many people and organizations for their support during the years in which this book has taken shape. Elliot Mishler’s foundational work on narrative and his stalwart faith in my scholarship have been crucial to the development of this project since its inception. I am grateful, too, for his careful listening, exacting reading, and insightful commentary on my work at each stage of the process. The narrative study group that he has led for more than twenty years has given me the space to take risks and to explore the boundaries of what has now become a huge and multifaceted field of research. The narrative scholarship of group members and their responses to my own are deeply embedded in the book. Members of DES Action and the DES Cancer Network—particularly Margaret Lee Braun, Pat Cody, Judith Helfand, Susan Helmrich, and Darci Picoult—have generously given time to this project, even as they have lived with DES and devoted their lives to creating social change. Because I cannot thank by name the DES daughters, I can only hope that the book does them justice. Bowdoin College has sustained my work with a Kenan Fellowship, sabbatical support, and grants for travel and research. Over the years, I have also received financial support from a postdoctoral fellowship provided by the National Institutes of Mental Health and from the American Council of Learned Societies and the National Endowment for Humanities. My colleagues in the Department of Sociology and Anthropology at Bowdoin College have supported my work by fostering a culture that integrates scholarship with teaching. Members of the staff at the Hawthorne-Longfellow

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Library, especially Guy Saldhana, have been the key to my success in locating obscure references. In addition, I owe thanks to Scott Lauzé and Sonya Dockett, who, as Bowdoin students many years ago, helped me transcribe some of the interviews. This book benefited greatly from the student and faculty question-andanswer sessions that followed public lectures at Bowdoin College, Haverford College, Wellesley College, and Vanderbilt University. I am also grateful to the audience members who responded to my ideas at various meetings and conferences: DES Cancer Network; American Sociological Association; Eastern Sociological Society; International Sociological Association; Society for the Social Studies of Science; Tampere Conference on Narrative; International Society of Critical Health Psychology; the Foucault Society; Reproductive Disruptions Conference; Georgetown Linguistics Society; Centre for Narrative Research; Interdisciplinary Conference on Communication, Medicine, and Ethics (COMET); and Society for the Study of Symbolic Interaction Couch-Stone Symposium. Roberta Apfel’s brilliant studies of DES and her enduring friendship sustained me early in the project. It was a privilege to collaborate with her in researching DES cancer. Kathy Davis has been a constant critic and writing companion whose feminist studies of women’s bodies and women’s health movements have significantly influenced mine. I greatly value Catherine Kohler Riessman’s contributions to narrative studies, her incorporation of my work in hers, and her exhaustive review of the book manuscript. I am also grateful to Sara Dickey and Sue Fisher for their friendship and commentary on successive versions of each chapter. Anne Figert spent a summer reviewing a penultimate draft of the book manuscript and helping me craft it into a coherent whole. Pat Cody and Retha Newbold read the manuscript in its entirety at my request, in an effort to minimize gaps, errors, and overly academic turns of phrase. Susan Reverby and I finished our books together, after many conversations, e-mail exchanges, and last-minute phone calls that sharpened my thinking and soothed my soul. In addition, many colleagues read individual narratives, chapters, or pieces of chapters: Jane Attanucci, Michael Bamberg, Gretchen Berland, Phil Brown, Wendy Cadge, Art Frank, Mark Freeman, John Grabowski, Rosanna Hertz, Arlene Katz, Kristin Langellier, Wendy Luttrell, Brinton Lykes, Craig McEwen, Eric Peterson, Elizabeth Pritchard, Alan Radley, John Rich, Ellen Rintell, Judith Rollins, Deborah Schiffrin, Jill Taylor, Rosemary Taylor, Matt Tomlinson, Krista Van Vleet, Lauren Wise, and James Wiseman. I also owe thanks to Micah Kleit and the two readers at Temple University Press. My family has been there for me in large and small ways. I am especially

Acknowledgmentsâ•… xi

indebted to Katharine Hubbard Bell, Mary Ellen Bell, Tom Hoerth, Emily Bell-Hoerth, and Carrie Bell-Hoerth. The depth of my gratitude to my children, Sam and Milla Bell-Hart, and my husband, Philip Hart, is beyond words. Some of the material in this book was published previously. Part of Chapter 1 is from “Gendered Medical Science: Producing a Drug for Women,” Feminist Studies 21, no. 3 (1995): 469–500. An early version of Chapter 2 appeared in “Narratives and Lives: Women’s Health Politics and the Diagnosis of Cancer for DES Daughters,” Narrative Inquiry 9, no. 2 (1999): 347–389. Portions of Chapter 3 are from “Intensive Performances of Mothering: A Sociological Perspective,” Qualitative Research 4, no. 1 (2004): 45–75; and “Becoming a Mother after DES: Intensive Mothering in Spite of It All,” in Discourse and Identity, ed. Anna De Fina, Deborah Schiffrin, and Michael Bamberg, 233–252 (New York: Cambridge University Press, 2006).

Introduction Connecting Lives, Texts, and Social Change

T

his book tells a story about women who attained legendary status in the annals of medicine. They were exposed prenatally to what was promoted as a benign and exciting new wonder drug prescribed to millions of American women to prevent miscarriage from the 1940s to the 1970s. This new reproductive technology—the synthetic estrogen DES— proved to be ineffective in preventing miscarriage, and in the long run it has had profound and damaging consequences for children, especially daughters of the women for whom it was prescribed (Dieckmann et al. 1953; Giusti, Iwamoto, and Hatch 1995). In 1971, medical scientists observed an association between prenatal exposure to DES and a rare form of vaginal cancer (clear cell adenocarcinoma) in women under age twenty; using available medical categories, they identified this synthetic estrogen as the first “transplacental carcinogen” (Herbst, Ulfelder, and Poskanzer 1971). “DES daughters,” as these women are now called, are also at risk for poor reproductive outcomes, including ectopic pregnancy, miscarriage, premature birth, and stillbirth (Giusti, Iwamoto, and Hatch 1995). Almost forty years later, DES-related cancer remains rare, but reproductive tract problems—including menstrual irregularities, poor reproductive outcomes, and structural or cellular anomalies—are common among DES daughters (Fisher 1999; McLachlan 2006).1 The 1971 study linking DES and clear cell adenocarcinoma was pivotal for women and for biomedical scientists and clinicians. The risks and damaging consequences of their prenatal exposure sent DES daughters and their

2â•…Introduction

physicians on an unanticipated journey through medical practices that could not adequately address the DES-related reproductive tract cancer, infertility, and uncertain health effects that could appear at any time during their lives. After 1971, DES daughters and their mothers began to participate collectively as well as individually in DES regimes of practice, and in so doing they reconfigured the political landscape with consequences for DES daughters, the doing of science, and the practice of medicine. Joining together to found the grassroots organizations DES Action (1975) and the DES Cancer Network (1982), activists challenged existing medical and scientific knowledge about DES, often judging science based on their intimate, firsthand knowledge of their own bodies. They also developed alliances with medical scientists to pursue funding and support for DES research, screening, and treatment programs. Their compelling spoken, written, and visual narratives are at the heart of this book. These stories capture the uncertainties, disappointments, struggles, hopes, fears, victories, pain, and joy of DES daughters. They also display how, individually and collectively, DES daughters drew from cultural resources and put “together in novel ways bits and pieces of what they found at hand” to create new knowledges, institutions, and practices (Layne 2003, 236–237). One of these new knowledges was rooted in their embodied experiences. Taken together, DES daughters used what they had and created a different kind of social movement, one that actively contributed to the development of transformed relationships of power and knowledge, not only in the history of DES and care for DES daughters but also in the politics of women’s health more generally. The key to understanding DES is connecting these three important frameworks (feminist health scholarship, embodied health movements, and narrative). Each is necessary but not sufficient. Throughout the book, these three frameworks weave the story together, although the emphasis differs from one chapter to the next. As a result, this book is not just another story of an embodied health movement, just another narrative analysis, or just one more feminist study of women’s health—it is an amalgamation of these frameworks in and through DES daughters.

Feminist Health Scholarship The stories these women tell and show highlight another unanticipated journey, about how we as feminist scholars understand and theorize power and knowledge. In the 1970s, a narrative of feminist health scholarship told of an “old regime” of power: controlling doctors at the top of a medical hierarchy wielding

Introductionâ•… 3

power over women patients.2 “Old regimes” of practice consist of heroic physicians making diagnoses rapidly, knowing the medical literature so well that the latest developments reported therein can be “photographically recalled,” and quickly transforming a critical medical problem into a biologically sound technical solution. Heroic medicine is active, decisive, and innovative. The moments when a doctor acts heroically are “the high points of medical training, medical practice, and medical history” (Apfel and Fisher 1984, 115). In heroic medicine, the body becomes “a battlefield, with good doctors fighting the good fight against bad bugs” (Todd 1994, 122). Old regimes of practice gained ascendancy in the early twentieth century. In this golden age of medicine, which reached its pinnacle in the 1950s, physicians had knowledge and expertise; patients did not, and thus, in this world, “an active doctor and passive patient agree[d] ‘the doctor knows best’” (Todd 1994, 122). This view of sovereign power was later challenged by a different feminist model of power and knowledge, often inspired by the scholarship of Michel Foucault, which tells about “new regimes” in which power is not held but exercised, develops in multiple locations with multiple strategies, and circulates through the body politic. New regimes of practice are characterized by webs instead of central decision-making points; thus, there is often no clear “headquarters” or individual male doctor to oppose. New regimes of practice consist of multiple kinds of treatment and multiple caregivers and practices within clinics as well as alternative and complementary treatments and caregivers outside conventional clinics (Klawiter 2003, 2004). Direct-to-consumer advertising, informedconsent legislation, managed-care regulations, and insurance-reimbursement policies also imbue the new regimes. Multiple sources of information can include Internet access to scientific literature, critical interpretations of the literature, chat rooms, and patient movements and organizations. Knowledge and decisions about the clinical contours of disease and public discourses emanate from local and unstable locations. Power is “exercised from innumerable points, in the interplay of nonegalitarian and mobile relations” (Foucault 1978, 94) instead of being exclusively vested in individuals or institutions. That is, power is “automatically ‘built in’ and mobile, embodied through social practices and norms” (Clarke et al. 2009, 3–4, emphasis in the original). This new kind of revisionist investigation by feminist health scholars, within the context of organizational changes in medicine and society, paid more serious attention to the spoken and written words of practitioners and patients inside and outside the consulting room. Feminist scholars and activists have uncovered ways in which women patients have been active agents and not just passive recipients of medical sovereignty and in which medicine has been beneficial to women, as well as tensions, contradictions, ambiguities,

4â•…Introduction

and uncertainties in medicine itself.3 They have shown how metaphors from the broad society and from within scientific and medical research communities move back and forth, blurring the lines between “outside” and “inside.” This scholarship reveals complex webs of power and mobile and transitory points of resistance that have produced shifting, fracturing, and regrouping cleavages (see Foucault 1978, 94).4 Feminist health scholars have written different narratives about power and knowledge even as they have challenged and brought changes in regimes of practice. Whereas old regimes of practice were dominant in the 1960s and 1970s, and new regimes of practice began to dominate in the 1980s, I argue that the stories of DES daughters display how the workings of power are more complex than the terminology “old” and “new” regimes implies. Old regimes of practice are less hegemonic than the depictions of them by 1970s women’s health scholars. The narratives of feminist health scholarship, telling stories about this regime of practices, helped launch a new kind of women’s health movement seeking to unseat sovereign physicians. At the same time, old regimes of practice have not completely disappeared today, although they have been generally displaced by new regimes of practices.5 Foucault proposed the concept of discourse that can help us make sense of these two forms of power. He argues, “There is not, on the one side, a discourse of power, and opposite it, another discourse that runs counter to it. Discourses are tactical elements or blocks operating in the field of force relations; there can exist different and even contradictory discourses within the same strategy; they can, on the contrary, circulate without changing their form from one strategy to another, opposing strategy” (Foucault 1978, 101– 102). The stories of DES daughters herein show that old and new regimes of power guided the work of medicine and science in working out solutions to problems experienced by DES daughters from the 1970s to the present. This book is unique in its exploration of old and new regimes of practice, interpretation of narratives in different settings, and analysis of how different ways of telling DES stories provide clues to an embodied health movement.

Embodied Health Movements Embodied health movements are among the innumerable points of power in regimes of DES practices. Beginning with women’s health movements of the late 1960s, there are now many embodied health movements, concerning for example HIV/AIDS, breast cancer, childhood asthma, and DES. From among a large, growing, and increasingly complex arena of patient groups and health movements, “embodied health movements” are distinguished by framing their organizing efforts and critiques of the system through personal

Introductionâ•… 5

awareness and understanding of individuals’ experiences and by challenging science—from forming alliances with scientists to secure funding and legislation to collaborating in the “doing” of science (Brown et al. 2004; Epstein 1996, 2008). In fact, many embodied health movement activists become involved in response to a direct experience of illness, and their everyday realities living in and through their bodies continue to seep into their activist work (Klawiter 2003; Bell 1988).6 Embodied health movements also challenge aspects of the political economy and transform traditional assumptions and lines of inquiry regarding disease causation and strategies for prevention (Brown and Zavestoski 2004, 682). These movements have become important sources of change in health care as well as major forces advocating change beyond health care by posing “collective challenges to medical policy and political belief systems, research and practice [and they] include an array of formal and informal organizations, supporters, networks of co-operation, and media” based on lived experiences (Brown et al. 2004, 52). The politicized collective work of embodied health movements transforms illness experiences, critiques medicine’s treatment of patients, and turns attention away from individual bodies as sites of risk to the risky environments in which the patients live (Brown et al. 2004, 51). Science is an “inextricable part” of embodied health movements (Epstein 1996). Activists challenge professional expertise, expand the meaning of “expertise,” and become a new species of expert (Epstein 2000). But rather than dismissing formal knowledge altogether, a key strategy of embodied health movement activists is gaining a place at the scientific table and drawing from their personal illness experiences—as well as from their acquired scientific credibility—while sitting there (Brown et al. 2004; Epstein 2000). Many groups combine experiential knowledge with “varying degrees of mastery of formal knowledge” in hybrid ways of knowing (Epstein 2008, 518).7 Activists’ participation at the scientific table can consist of reviewing and evaluating the methodologies, ethics, and topics of proposed clinical trials for federal funding by the National Institutes of Health (NIH) or Institutional Review Boards and acting as informal representatives to committees advising the Food and Drug Administration in the evaluation of new drugs (Epstein 2000). Becoming research collaborators and coauthors, attending or being on the program of scientific conferences or meetings, and establishing new models for participatory research are other ways that embodied health movement activists have reconfigured the knowledge-making practices of biomedicine (Bell 2003; Epstein 2008). Yet by expanding the possible points of entry into knowledge-making, this reconfiguration also transforms the worldviews and dynamics of power among activists themselves (Brown et al. 2004; Epstein 1996). For example, hierarchies within embodied health movements have

6â•…Introduction

emerged between those activists who have and have not “sat at tables,” or between activists who have become familiar with “scientific and technical knowledge or tools” and others who have not (Epstein 2008, 518). “Expertification” and “scientization” among activists also create barriers to the entry of potential new members (Epstein 2000, 2008). To a large extent, embodied health movement activists must depend upon scientific understanding and innovation for long-term screening and treatment (Brown et al. 2004, 56). There are multiple pathways and consequences of this dependence. Over time, embodied health movement activists participate in regimes of practice, entering at multiple points, seeing a variety of practitioners, and undergoing a range of treatments. Being subjected to these repeated and diverse encounters with continuously transforming practices and practitioners reshapes their subjectivities. The need for long-term screening and treatment also fosters faith in the scientific establishment. Even when their tactics are confrontational, embodied health activists resist the notion that the scientific establishment is “the enemy.”8 Their dependency and strategic interventions produce knowledge, habits, and discourses, contributing to constant modifications and continual shifts in regimes of science. At the same time, the incorporation of expert knowledge transforms the subjectivities of embodied health activists with biomedically informed changes in their understandings and experiences of their own bodies. DES activism is one of many embodied health movements that draws from lived experiences to construct a politicized collective, to engage in consciousness raising and identity work, to critique science, and to continually return for screening and a variety of medical interventions. There is no simple story or truth about how embodied health movements work, because no two of them are exactly alike. Each has its own set of issues, participants, and so forth. Indeed, these multistranded and diffuse movements might best be conceived of as coalitions or loosely connected sets of activities rather than consciously structured organizations, because they encompass such a wide range of groups and service providers, interests, and manifold projects (Epstein 2000; Klawiter 2003). Embodied health movements exceed the usual boundaries of social movement activity in fractured unities and regroupings, so that the “actions of state officials, scientists, and others who might not typically be thought of as within a movement, can be understood in light of the culture of action in which the movement takes place” (Brown et al. 2004, 64). Instead of seeming to be a singular concept, the multifaceted nature of embodied health movements opens them up to be studied in a nonlinear, nonpositivistic way. In fact, their very hybridity lends itself to a narrative understanding of them. In the next section, I show how the epistemology and methodology of narrative analysis emphasize multiplic-

Introductionâ•… 7

ity, fluidity, and reflexivity, approaches to understanding social life that can make sense of these hybrid social movements and of the multistranded DES embodied health movement. Approaching DES narratively does not produce a simple or “one true” story of this embodied health movement, because there is not “a” story to be told.

Narrative Analysis and DES Stories This book contains the story of an embodied health movement and the stories of individuals producing, participating within, affected by, and circulating through this movement. Central to the book are the stories of DES daughters. These stories are drawn from interviews; “Letters to the Editor” and “Personal Accounts” published in the DES Action newsletter, DES Action Voice (1979–2001); an autobiographical film, A Healthy Baby Girl (Helfand 1996); and narrative accounts produced during a scientific conference, “1992 NIH Workshop: Long-Term Effects of Exposure to Diethylstilbestrol (DES).” Together, these different ways of telling and showing DES stories provide clues to how individually and collectively DES daughters drew from cultural resources to create an embodied health movement that engages critically with the “old” and “new” regimes of DES. The core evidence is personal narratives from in-depth interviews with twenty DES daughters, ten who had had DES-related cancer and ten who had not, that I conducted from 1982 to 1995. The women were between ages twenty-one and forty when they were interviewed.9 The interview design encouraged them to manage the direction and pace of the interview. Although I did not ask them to tell stories, they often answered my questions by telling stories; indeed, a careful look at the discourse demonstrates that the two of us constructed stories in the space between us.10 The stories—personal narratives—that emerged during these interviews include rich and complex clues about the ways individual DES daughters have understood and engaged with medicine since the late 1960s. In interviews, published accounts, the 1992 DES Workshop, and film, the construction of the DES daughters’ stories, like the events that they portrayed, took place in specific historical contexts and shifting relations of power. Their stories are not simply representations or explanations of events that took place in their lives or reports of feelings that these events evoked, but indications of the settings in which they were produced and the regimes of practice in which they were “lived.” For example, even when describing “what might appear to be ‘just personal’ details,” DES daughters, like other people, “locate themselves politically, economically, and historically” (Andrews 2002, 11). They inevitably weave dominant discourses of a social insti-

8â•…Introduction

tution—such as medicine—into personal narratives about lived experiences with the institution. Yet, despite the power of dominant discourses, people “interpret past experiences in composing lives in the present that adapt to, resist, and sometimes reach beyond” them (Riessman 2002, 37). Speakers can “dip in and out of dominant cultural scripts€.€.€. manipulating and reformulating them in ways that are not always immediately apparent. The end result is an unanticipated and very subtle subversion” of the dominant cultural script (Andrews 2002, 9). DES daughters’ stories alternately reflect, resist, or transform dominant discourses about expertise, disease, gender, and power. Placing DES daughters’ stories at the center of this book connects my analysis to the narrative turn in social sciences and extends that turn by incorporating the production of multiple narratives in multiple locations. In its reflexivity, the narrative turn is one response to disenchantment with the “dominant ‘Cartesian’ paradigm of rationality” at the core of modern social science (Hinchman and Hinchman 1997, xiv). Narrative approaches counter traditional models of knowledge by stressing that there are multiple truths, constructed by knowers who are socially and historically located, about a world that is neither fixed nor independent of knowers. At the same time, narratives do not have fixed meanings. They are produced collaboratively and can be interpreted differently by different audiences. And, as collaborative performances, narratives connect selves to one another—tellers with listeners, writers with readers, performers with audiences, photographers with viewers, narrators with present or imagined others (Langellier 2001a, 700; see also Bell 2002). The turn to narrative attends to the narratives of informants and interviewers’ participation in the construction of their stories and also to the ways in which their stories become interpreted and retold as our stories. Building on the canonical work of William Labov and Joshua Waletzky (1967), I define “narrative” as a sequence of ordered events that are connected in a meaningful way for a particular audience in order to make sense of the world or people’s experiences in it (Hinchman and Hinchman 1997). This definition assumes one action is consequential for the next, that a narrative’s sequence is held together with a “plot,” and that the “plot” is organized temporally or spatially (Riessman 2002, 698). More than a list or a chronicle, a narrative adds up to “something.” In constructing a narrative, people make single events meaningful in relationship to other events, especially when events do not obviously make sense, “where there has been a breach between the ideal and real, self and society” (Riessman 1993, 3). When a person’s life is interrupted by an illness, narrative offers “an opportunity to knit together the split ends of time, to construct a new context,” and to fit the disruption caused by illness “into a temporal framework” (Hydén 1997, 53). Narrative analysis displays how this “something” emerges by taking the story itself as

Introductionâ•… 9

its “object of investigation” (Riessman 2002, 696; Bell 1988).11 The details of talk—how stories are put together, the images, pictures, and explanations interwoven in them, and the position of narrator in relation to the story events and audience—all convey something important about a narrative’s meanings. Whereas most narrative research inspired by Labov and Waletzky focuses on the “discrete story as the unit of analysis” (Riessman 2002, 698), multiple narratives are produced interactionally during interviews, in written exchanges, and in other settings. Tracing the details of multiple narratives in different contexts—for example within and across interviews, in letters to the editor, and during a scientific conference—displays DES daughters’ accumulated knowledge and experiences of their bodies and reveals their participation in old and new regimes of DES. The particular context in which narratives are produced “matters” for their production and interpretation (Polletta 2006). Until recently, most social science scholarship focused on the production and interpretation of narratives in face-to-face research interviews (Riessman 1993, 2008). As they have expanded the scope of narrative inquiry, scholars have focused on narratives in different contexts. One of these is letters to the editor in newsletters, magazines, newspapers, and Web sites. Like other narratives, letters are social practices, drawing writers and readers together in an exchange, and have structural conventions (address, salutation, business, farewell, and signature) that help shape their content (Jolly and Stanley 2005). Relationships and cultural discourses are reflected and constructed in “the performative, textual, and rhetorical aspects of letters” (Stanley 2004, 211). Writing letters in response to reading feminist texts was an important dimension in the development of feminist ideas and communities during the 1970s and 1980s, particularly for women’s health activism (Kline 2005; Davis 2007). Together, letter writers developed a “virtual community of health feminists” (Kline 2005, 89).12 Particular exchanges or bodies of letters written by individual writers to different sorts of correspondents are socially and historically located, have shapes—“temporal dimensions, elisions, and silences, gaps and destructions and interpretational framing”—and discursive strategies (Jolly and Stanley 2005, 84–85). When editors bring letters together, publish them, and contextualize them—as do the editors of the DES Action Voice— they act as “brokers” between writers and readers, interpreting and filtering knowledges (Jolly and Stanley 2005, 93). Another context is in public discourse. Feminists have long noted women’s exclusion from public discourse. Although this “has never in practice been absolute, and women in many societies past and present have found ways to make their voices heard, there does seem to be a relatively widespread and long-lived pattern whereby the public contexts that have most symbolic

10â•…Introduction

value are also the most resistant to the equal participation of women” (Cameron 2006, 8–9). Recent scholarship has considered how public speech is produced and negotiated in different local settings and communities of practice, and the extent to which “alternative discursive practices” can be implemented (Baxter 2006, xviii). At the 1992 DES Workshop, women in different locations found ways to make their voices heard. The “small stories” (Bamberg 2006) and personal narratives produced during the 1992 DES Workshop came from everywhere—from women and men panelists, audiences, DES activists, biomedical scientists—and destabilized the discourse of science as usual. They blurred the boundaries between what constitutes “science/notscience” and “scientist/not-scientist” and exemplified as well as opened up space for a DES embodied health movement. Visual narratives, produced for public consumption, are also crucial points in the DES embodied health movement. DES daughters created films (Helfand 1996; Helfand and Gold 2002), plays (Picoult 1991), and photo essays (Braun 2001) to make visible and to give voice to their experiences, to challenge existing medical and scientific knowledge about DES, and to reconfigure the political landscape.13 Many different kinds of visual evidence have been employed by social scientists on and off for over a century, including maps, drawings, diagrams, plans, tables and charts, films, paintings, and photographs (Harrison 2002). Narrative scholars began doing so only recently.14 The autobiographical documentary film A Healthy Baby Girl shows and tells DES stories by weaving together everyday events filmed by Judith Helfand during a five-year period with photographs, interviews, entries from a journal of drawings Helfand created after her surgery for DES cancer, and archival footage from the 1940s and 1950s. A Healthy Baby Girl is located within a genre of film documentaries that began to appear in the 1960s, when (ethnographic and documentary) filmmakers began to put themselves into their films.15 Like other autobiographical documentaries, A Healthy Baby Girl includes reflexive strategies that contest objectivity, distance, and the noninterventionism of traditional documentarians; incorporates the filmmaker as a character in the story; shares textual authority by handing over the camera; and renders the private sphere a matter for public knowledge (Renov 1999; Lane 2002). As does the turn to narrative in the social sciences, the turn to autobiographical documentary responds to disenchantment with the dominant paradigm of “historical and scientific objectivity” (Lane 2002, 5). In an autobiographical documentary, “there is no fully outside position available” (Renov 1999, 142). The multilayered display of sounds and images in A Healthy Baby Girl underscores messages some sociologists have claimed for textual narratives—of their open, shifting, and multiple meanings, the importance of the audience in producing

Introductionâ•… 11

and interpreting them, and ways in which they can reshape and reform dominant cultural scripts. Narrative analysis enables the possibility of seeing how change comes about. By employing narrative analysis, and thus placing DES daughter stories at the center of the book, I show how individual lives are connected to social structure. DES daughters’ stories have the potential for forging links between DES daughters and providing support to each other as well as connecting the personal experiences of individuals to public issues of social structure, thereby creating and sustaining embodied health movements. When individual people make choices and decisions about their lives (responding to the diagnosis of cancer or attempting to become mothers, for example), they simultaneously make sense by drawing from dominant discourses and creatively rework, reconfigure, or resist them, drawing from what is at hand, creating new pathways through old narratives and new cultural scripts. Together, the DES stories produced in interviews, letters to the editor, a scientific workshop, and visual materials show old and new regimes of practice in a DES embodied health movement.

Plan of the Book Employing the frameworks of narrative analysis, embodied health movements, and feminist health scholarship, the chapters take up, in succession, DES history, politics of knowing, becoming mothers, remapping bodies, and producing change. Chapter 1 sets the context for understanding the stories of DES daughters and postmodern feminist health scholarship and activism with an embodied history of DES. It begins with the early history of DES, the hormonalization of women, and women’s responses from the synthesis of DES in 1938 to the discovery of its carcinogenic effects in DES daughters in 1971. It traces the emergence of the DES embodied health movement in an institutionalized field of knowledge, practice, and power forged by medical scientists and DES activists for the next twenty years, leading up to and providing the possibility of successfully organizing the 1992 DES Workshop. It concludes by summarizing the multiple strands of activism and regimes of practice emanating from the 1992 workshop and their review at the 1999 DES Research Update Workshop. Chapter 2 explores how knowledge about DES is produced, how doctors and daughters exercise power in the production of knowledge, and ways in which the field of power and knowledge has been transformed from the late 1960s to the 1990s. This chapter focuses on the experiences of DES daughters who had cancer, how they learned of their exposure to DES and DES cancer, how they assumed the identity of “DES daughter,” and how their assumption

12â•…Introduction

of this identity and their negotiations with their physicians participated in the construction (and transformation) of medical knowledge about DES. It begins with a story by a DES daughter (“Esther”) who developed cancer before the link between prenatal exposure to DES and vaginal cancer had been identified, before the name “DES daughter” had been given to women exposed to DES prenatally, at a time when vaginal cancer in premenopausal women was almost unprecedented, and before there was a women’s health movement. Her story exemplifies an “old regime” of practices. Stories of women who developed cancer in the 1980s demonstrate how “new regimes” of practice work, when doctors were no longer granted authority by the institution of medicine in quite the same way, and patients were no longer passive victims of that institutionalized authority. In Chapter 3, old and new regimes of practice appear in a different arena—the cultural imperative to become mothers—from the early 1970s to the present. This chapter focuses primarily on the experiences of DES daughters who have not had cancer, who worried in anticipation of attempting to become pregnant, whose difficulties led them more and more deeply into the use of new reproductive technologies, and who suffered from multiple pregnancy losses. It looks critically at discourses of mothering that presume motherhood is a goal for all women and that the progression from desire to healthy baby is seamless. It interweaves interview narratives with “Personal Accounts” and “Letters to the Editor” in DES Action Voice. The chapter begins with a letter sent to DES Action Voice by a DES daughter in the early 1980s. “Stacey” tells a story of her harrowing experiences becoming a mother. She was deeply invested in satisfying the cultural imperative of motherhood and had multiple medical interventions and pregnancy losses before the premature birth of her daughter. For DES daughters, becoming a mother is fraught with fear and uncertainty, simultaneously difficult as a result of their bodies’ responses to prenatal exposure to DES and challenging in their reentry to systems of medical surveillance recommended and often required for the successful production of children. DES daughters have to negotiate the promise offered by new reproductive technologies with the failure of the earlier promise of DES, and in this negotiation based on their lived experiences they gain the authoritative voice to produce knowledge, to inform, and to contest the medical view. This contest and negotiation is demonstrated with DES daughter stories from the 1980s and 1990s about becoming and not becoming mothers. DES daughters have, by their definition and medicine’s definition, medically deviant and socially non-normative bodies. Chapter 4 begins with a story of medical heroism, in which medicine had the authority, the knowledge, and the power to reconstruct the body and thus made DES daughters’

Introductionâ•… 13

bodies less medically deviant but not always more normatively functional. It analyzes the interview narrative of a DES daughter (“Cassie”) who had cancer in the late 1960s, telling of medical heroism to save her ability to have sexual intercourse by reconstructing her vagina as well as the limits of medicine in this respect. Stories from the 1980s show how these medical limits created possibilities for DES daughters to speak authoritatively about their bodies and to talk back to medicine in “‘local centers’ of power-knowledge” (Foucault 1978, 98). In their production of knowledge about the way their reconstructed bodies are still not normatively functional and cannot be made functionally whole, DES daughters contested medical sovereignty and the view that medicine can fix everything and anything. In its demonstration of medicine’s limits, Chapter 4 complements Chapter 3, in which physicians’ skills go a long way to accomplish the cultural imperative of motherhood. Chapter 5 widens the discussion, looking at daughters, doctors, and scientists—historically a hierarchy of knowledge and power from scientists at the top to daughters at the bottom—and tracing the dynamics of an embodied health movement by focusing on stories from the 1990s. The chapter begins with the opening of the NIH-sponsored 1992 DES Workshop and shows how power is “exercised from innumerable points, in the interplay of nonegalitarian and mobile relations”(Foucault 1978, 94). Subjugated knowledges—those forms of knowledge that are considered naïve, not scientific, or inadequately scientific—and authoritative knowledges circulate among the participants. Although the discourses of new regimes are dominant, those of old regimes also guide the work of medicine and science in working out solutions to problems experienced by DES daughters. By analyzing stories told during the 1992 DES Workshop from the podium and the audience as well as works of art about DES performed off the workshop floor, it shows how doctors, daughters, and scientists make multiple forms of knowledges— sometimes collaboratively—and have multiple and shifting voices in the production of knowledge. Chapter 6 interprets narratives in the autobiographical documentary film A Healthy Baby Girl by DES daughter Judith Helfand (1996), about her experiences from 1990 (when she was diagnosed with cancer) until 1995 (the fifth anniversary of her surgery). The significant impact of DES is introduced through Helfand’s film, which explores cultural assumptions about gender, ambiguity and uncertainty in medical knowledge, and the necessity of drawing from and reworking available resources to recover from DES cancer. The film also tells a story of old and new regimes of practice in medicine and science and of the DES embodied health movement—of multifaceted and hybrid activism that draws from and continually returns to the lived experiences of DES daughters. In the first narrative—the opening scenes

14â•…Introduction

of the film—Helfand draws connections between her life and the political, economic, medical, and scientific worlds of DES. In the second narrative, Helfand and her parents talk about infertility, assisted reproduction, and the possible effects of DES on Helfand’s eggs. Embedded in the “eggs” narrative is a shared insight about the significance of DES in the formulation of the endocrine disruptor hypothesis: that chemicals can cross the placenta, disrupt the development of the fetus, and have effects that might not appear until decades after a baby’s birth (Colborn, Dumanoski, and Myers 1996–1997). This hypothesis widens the focus from cancer and acute toxicity to reproductive and developmental damage. A third narrative shows and tells a story of Helfand’s mother and father sending letters to President George H. W. Bush, urging him to sign the DES Research and Education Bill—passed by the U.S. House and Senate in 1992—into law. The “Dear President Bush” story reintroduces letters as social practices and explores these letters to the president as examples of a well-established strategy of public discourse and activism in American politics. The Conclusion begins with a description of a DES Action thirtiethanniversary celebration in September 2008, reflects on the future of the DES embodied health movement, and looks ahead to the future of embodied health movements, narrative scholarship, and transformed relationships of power and knowledge in women’s health politics. In sum, this book weaves together different narrative strands over time and across space to explore how illness, suffering, and uncertainty can become opportunities for producing embodied knowledges and making social change.

1

K A History of DES

D

DES and the Hormonalization of Women

ES (diethylstilbestrol) was synthesized in 1938, released for sale by prescription only in 1941, and marketed until 1997. Many think of DES only as a drug prescribed to pregnant women to prevent miscarriages. But DES has had a long, controversial, and complex history. A brief summary of the early history of DES will help set the context for understanding the stories of DES daughters and postmodern feminist health scholarship and activism that are the focus of this book.1 DES figures in what has been described as the “hormonalization” of women, when medical science began to explain gendered behavior on the basis of “chemical messengers” or “sex hormones” and “to draw the female body more and more deeply” into gynecological clinics (Oudshoorn 1994, 149).2 The regulation of menopause was the first site of intervention for DES. In the process of translating findings about the puzzling effects of DES into certainty about its safety before it was released for sale in 1941, biomedical scientists simultaneously translated uncertainty about the puzzling effects of menopause into certainty about its pathology. That is, they medicalized aging women’s bodies: They demonstrated that menopause represents a breakdown in the body’s ability to produce a regular menstrual cycle. This breakdown socially constructed aging women’s bodies as deviant and unruly, requiring medical surveillance. Biomedical scientists simultaneously hormonalized aging women’s bodies with their medical solution to the pathology: DES would create a new “menstrual cycle” by replacing estrogen in a

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controlled, standardized way. Women’s bodies (younger and older women’s bodies) do not always have twenty-eight-day menstrual cycles, but DES-controlled bodies could. With DES, aging “women” could become “non-reproductive well-regulated human females” (Bell 1995). In fact, DES became a major means of medicalizing menopause and pregnancy. Not only was DES used widely during menopause and pregnancy but it was also used after childbirth (to suppress lactation), the morning after unprotected intercourse (to induce bleeding), and in adolescent girls (to relieve outbreaks of acne and to regulate height).3 Almost immediately after its synthesis in 1938, DES became the focus of much attention by clinical researchers, because initial reports suggested it had great promise for the practice of gynecology. Before DES, estrogen therapy was costly, time consuming, and sometimes painful, because women could be treated only with injections, and each injection required a visit to the doctor. Initial reports about DES suggested that its use would make estrogen therapy less expensive, less time consuming, and less painful, because DES was cheap to produce, easy to purify, and simple to prescribe. DES was potent orally, and thus women could take it at home instead of going to a doctor’s office to receive injections. These improvements could make hormone therapy accessible to more women than ever before. In addition, DES was not patented, and so it “was welcomed for clinical trial with guarded hopefulness throughout the world” (Mazer, Israel, and Ravetz 1941, 675). Despite its therapeutic promise, evidence soon circulated that DES might be very toxic. In 1939, animal studies published in the United States demonstrated its carcinogenic effects, and clinical studies reported that up to 80 percent of women taking DES suffered gastric intestinal distress (Shorr, Robinson, and Papanicolaou 1939; Leech 1939). However, despite these dramatic findings in human and animal research, medical scientists at the time were uncertain about how to interpret them. Thus, because DES was potentially so beneficial yet potentially so unsafe, a great deal of attention was turned to DES research within medicine and within the Food and Drug Administration (FDA), the federal agency charged with enforcing regulations that require proof of safety for all new drugs (Bell 1986; Dutton 1988). Since passage of the Federal Food, Drug, and Cosmetic Act in 1938, the FDA has had the power in the United States to determine whether drugs are safe and on that basis to decide whether they may be marketed. DES could not be sold until “scientific experts” gave sufficient proof to the FDA that it was safe. The medical science represented by the review of DES involved negotiations among clinical investigators, officials at the FDA, and pharmaceutical manufacturers regarding how to judge the effects of DES as well as its safety prior to its release for sale. By 1941, most of the scientific and medical

A History of DESâ•… 17

experts consulted by the FDA believed that DES was “safe” (Hamblen 1941; Bell 1986). Because so much evidence had amassed in its favor, in 1941 the FDA approved DES for marketing to treat four conditions—menopause, senile vaginitis, juvenile vaginitis, and lactation suppression. Its release for sale came “after one of the most thorough investigations ever given a pharmaceutical product” (Hamblen 1941, 928). It became the first widely used estrogen replacement therapy during menopause (Bell 1987, 1995). Even though the FDA approved DES for limited uses in 1941, it could not prevent physicians from prescribing DES more widely. Before 1941, DES had been used experimentally to treat many conditions, including infertility and pregnancy complications. After 1941, physicians continued to conduct research and to prescribe DES for these conditions (Bell 1980). Most well known in the research about DES in pregnancy is the study of high-risk women with previous pregnancy losses by Harvard obstetrician-gynecologist George Smith and his wife, biochemist Olive Watkins Smith, who were particularly interested in preventing eclampsia, a rare but very serious complication of pregnancy that can cause convulsions (Apfel and Fisher 1984; Smith 1948; Smith and Smith 1949). The Smiths had studied “the role of endocrine therapy in the management of pregnancy complications” (Dutton 1988, 48) since the 1930s and began to investigate the “action” of DES in human pregnancy in 1943 (Smith 1948, 821). In a 1946 paper published in the American Journal of Obstetrics and Gynecology, they “launched a treatment regime” for the use of DES in pregnancy that began early, increased dosages over time, and ended in the thirty-fifth week of pregnancy (Apfel and Fisher 1984, 20, 135–136).4 DES was originally recommended for “high-risk women”—that is, pregnant women who had diabetes or other illnesses or who had had repeated miscarriages—but soon it was used even by “normally pregnant” women to increase their chances of having “larger, healthier, or happier babies” (Ferguson 1953, 600). Between five and ten million pregnant women and their fetuses were exposed to DES during pregnancy.5 By the 1950s, clinical studies demonstrated that DES was no more effective than a placebo in preventing miscarriage (Dieckmann et al. 1953; Ferguson 1953). In fact, William Dieckmann’s group at the University of Chicago conducted a double-blind study using the “Smith and Smith regime” that is generally regarded as helping establish the “gold standard” of randomized controlled clinical trials now required for FDA approval of all new drugs (Dieckmann et al. 1953).6 Ironically, physicians at the time disagreed about how to interpret the evidence.7 Only after DES was identified as the first transplacental carcinogen in 1971 did FDA officials finally circulate a warning to physicians to stop prescribing it during pregnancy (Herbst, Ulfelder, and Poskanzer 1971).8 That same year, Arthur Herbst, lead author

18â•… Chapter 1

of the study linking prenatal exposure to DES and reproductive tract cancer in DES daughters, established the Registry for Research on Hormonal Transplacental Carcinogenesis at Massachusetts General Hospital.9 Three years later, in 1974, the National Cancer Institute (NCI) and the American Cancer Society initiated a national cooperative program to investigate and to treat the effects of prenatal DES exposure, the National Cooperative Diethylstilbestrol Adenosis Project (DESAD). The program was a joint effort of the Baylor College of Medicine, the Gundersen Clinic, Massachusetts General Hospital, the Mayo Clinic, and the University of Southern California.10 The intense focus of attention on DES, uncertainty and ambiguity about its effects, and its infusion with cultural assumptions about gender have haunted it ever since.

Women’s Responses to Hormonalization The early history of DES could be read only as an example of controlling doctors at the top of the medical hierarchy producing and prescribing a drug that medicalized menopause and pregnancy. As we shall see, this reading is too simplistic. Gynecologists were neither unified nor alone in exercising power even as they were proving successful in efforts to hormonalize women.11 Before 1971, patients participated individually in “old” DES regimes of practice, seeking help during their pregnancies, following the advice of their physicians, and continuing (or not continuing) to take their medicine. Occasionally, their participation in this mobile and transitory field of DES practices stands out. One story often reported, for example, is about a “DES mother” whose daughter developed vaginal cancer during the 1960s. She asked her physician—who was also puzzled about the cause of her daughter’s very rare cancer and was searching for answers—whether it could have been caused by the DES she took during the pregnancy. Her physician was Dr. Howard Ulfelder, who listened to her, took her question seriously, researched the possibilities, and eventually was “brought face to face with the necessity to report the findings” (Ulfelder 1981, xii).12 Ulfelder—along with Herbst and David Poskanzer—was one of three authors of a landmark article in the New England Journal of Medicine that links prenatal exposure to DES with vaginal cancer (Herbst, Ulfelder, and Poskanzer 1971). Before 1971, a mother could suggest an explanation for a rare medical condition, but during the old DES regime of practices it was up to her gynecologist to listen to her and to produce knowledge. She could provide a “clue to etiology,” but only he could provide the scientific explanation for it; he received public recognition, but her contribution was not acknowledged in the New England Journal

A History of DESâ•… 19

of Medicine (Ulfelder 1980). At that time, dominant cultural discourses in medicine discouraged doctors from talking with their patients in any detail about diagnosis and treatment, or patients or their mothers from expecting their intuitions, hunches, or embodied knowledges to be taken seriously by their physicians. Perhaps the initial impulse in the DES embodied health movement could be identified even before 1971 in the question asked by this mother, but this embodied health movement seems to be more accurately traced to multiple origins. For twenty years after the publication of the 1971 report, medical scientists and DES activists—sometimes together and sometimes separately— forged an institutionalized field of knowledge, practice, and power for DES. As the revisionist feminist theories of power suggest, knowledge about DES emanated from local and unstable locations instead of a central decisionmaking point while mothers, daughters, and doctors participated in new regimes of practices. By the early 1990s, DES activists had used their embodied knowledges—including personal experiences of illness—to judge the quality of DES science and had attempted to introduce their experiences into the design of research. They had also begun to advocate for a transformation of traditional assumptions about good and bad science and to blur or redefine lines between experts and laypeople, a goal for which they had been joined by some clinicians, legislators, public officials, and biomedical scientists. Their efforts culminated successfully in a “workshop” sponsored by the National Institutes of Health (NIH) in 1992 to review the field and to set an agenda for the future (discussed further in Chapter 5). The agenda set at the workshop incorporated expanded definitions of research areas to explore, lines of support for DES-related legislation, and ways to include DES activists in the production and circulation of DES knowledge. The participation of DES activists during and after the workshop is an early example of lay involvement in scientific research.13

A DES Embodied Health Movement History In the sections that follow, I trace a DES embodied health movement, moving backward and forward in time from the 1970s to the 1990s, picking up and dropping the story to show how it was possible for the 1992 DES Workshop to become a turning point, as well as to demonstrate the pathways and transformed relations of power this turning point subsequently made possible. Actions leading up to and during the 1992 DES Workshop illustrate how activists drew from their embodied experiences of DES to challenge experts, to gain legitimacy, to blur boundaries between experts and

20â•… Chapter 1

laypeople, to initiate scientific directions, and to move fluidly between lay and expert identities.

Forming DES Alliances Developing alliances with biomedical scientists in the pursuit of prevention, treatment, research, and expanded funding is part of the culture of action in which DES activism took place. From the mid-1970s, DES activists forged partnerships with medical scientists in demonstration and outreach projects and in pursuit of funding and research. In 1975, when the first DES Action group formed in California, DES Action contacted the California State Health Department Physicians Advisory Committee on DES and successfully advocated for consumer participation on the committee, which subsequently secured funding from the NCI to develop a pilot public education program about DES in the San Francisco area.14 The California project was one of several joint demonstration and outreach projects among DES Action, state health departments, and private cancer organizations that was put in place by 1978 (SRI International 1978, 47–48). In addition to joint demonstration and outreach projects, activists and professionals formed alliances to advocate for a government task force on DES. After 1975, local groups of women concerned about the effects of DES began to meet in New York and other northeast cities, in addition to the Bay Area. In 1977, the Long Island DES group called a meeting for all of them to discuss forming a national group. In December 1977, DES mother Fran Fishbane, soon to become the first president of DES Action, joined with physician Sidney Wolfe, from Public Citizen, a national nonprofit advocacy group, and feminist health activist Barbara Seaman to visit the secretary of the Department of Health, Education, and Welfare (DHEW).15 The three expressed concern about a recent report from the University of Chicago that DES mothers were at an increased risk of developing breast cancer. Their visit ended with the promise of a federal task force on DES in 1978, only the third ever created by DHEW (the others had been on tobacco and asbestos). The DES Task Force held its meetings in 1978 to review the current state of knowledge about the effects of DES on mothers, daughters, and sons; to identify research gaps and to recommend future research to definitively settle the gaps; and to make a number of recommendations for immediate action.16 The task force comprised “government” members and “consultants”; Wolfe, Fishbane, and Seaman were among the eight consultants. Among the other “consultants” were physicians Herbst and Ulfelder and a mother from the New York DES Action group, lumping together laypeople and scientific experts in this category of membership. The lay representatives to the task

A History of DESâ•… 21

force provided, as one physician put it, “a reminder that they were ‘discussing a human, not an academic problem’” (Dutton 1988, 330; italics in the original). This reminder included accounts—“many of them first-hand”—of women who had requested information concerning possible DES exposure from their physicians and had been “met with lack of cooperation” (U.S. DHEW 1978, 19). The DES Task Force Summary Report, submitted to the surgeon general of the United States, represents a consensus of the fourteen government members and eight consultants. The consensus emphasized the need for further study of all DES-related problems and estrogen-containing drugs, institution of a major educational program for health care providers, and communication to all DES-exposed individuals of their exposure (U.S. DHEW 1978, 21–22). The DES Task Force was reconvened in 1985, once again partly due to pressure from members of DES Action and from Wolfe. Again, consumer advisers were invited to participate in a session of the task force and to advise the task force in its “consideration and evaluation” of studies about the association between exposure to DES and subsequent health effects and in the development of updated recommendations for people exposed to DES. Before the meeting, DES Action submitted written recommendations to the task force. A statement read at the session by DES Action Research Liaison Judith Turiel was later published in the DES Action Voice (Turiel 1985). In other words, DES activists drew up closer to the scientific table in 1985 than they had in 1978. DES activists also forged alliances with medical scientists in other research arenas. In 1984, for example, Margaret Lee Braun and Susan Helmrich, cofounders of the DES Cancer Network (DCN), successfully persuaded Herbst to forward a letter about the DCN to each woman listed with the Registry for Research on Hormonal Transplacental Carcinogenesis at the University of Chicago. Then, as now, the Registry was “the most complete compilation of data on persons with clear cell cancer history.”17 Over the years, the alliance between the DCN and the Registry became mutually beneficial. This was in part because the Registry became a mechanism for connecting clear cell patients. By 1990, the DCN had amassed “the largest compilation of clear cell patients outside of the medical community,” locating more than two hundred women with a history of clear cell cancer.18 When, “despite Herbst’s efforts” the Registry had been unsuccessful for six years in obtaining funds from the NIH, the DCN contacted its members directly and mobilized them, as well as provided preliminary evidence to support Herbst’s application for a study of the long-term health of cancer survivors.19 Mutual support for the experimental study of DES exemplifies another connection between scientists and citizens. In 1983, as part of its strategy for

22â•… Chapter 1

improving access to current DES research, DES Action organized a one-day meeting at the University of California, Berkeley. The meeting brought together basic scientists, pathologists, epidemiologists, and DES Action members from the Bay Area to identify potential research questions about DES exposure, to explore how to generate and to encourage imaginative projects, and to foster communication among the different communities.20 The four areas of focus, mainly on nonclinical research findings, included biology and endocrinology, immunology, cytogenetics and cytochemistry, and epidemiology, each introduced by a researcher in the area. DES Action provided a summary of notes from the meeting and was charged with the tasks of facilitating continued communication and assisting the scientists in the development of proposals for future research based on project objectives and methodology set by the researchers.21 As a result of contacts established with scientists involved in DES research, DES Action was invited to give presentations at the prestigious Gordon Research Conference in 1987. In turn DES Action and DCN were successful in placing biomedical scientists on their programs during DES Action and DCN annual meetings.22 By not being adversarial, DES activists became effective partners with scientists by asking for more research, money, and support. From the mid1970s, DES activists gained a place at the scientific table by developing citizen and scientist alliances in the pursuit of research, treatment, prevention, and expanded funding. Just what constituted a “place,” how the activists used it, and with what consequences varied over time and from one space to another. For example, DES activists achieved participation on state and federal committees, including California’s pilot education project to improve medical treatment and the DHEW’s DES Task Force. They worked together with scientists to identify DES research projects and to secure federal funds from the NCI for the support of experimental and clinical research. Over the years, DES activists were invited to help organize, speak during, and become cochairs of sessions during scientific conferences about DES. In turn, they were able to secure scientific experts as speakers during their own symposia and meetings. Sitting at these different scientific tables enabled DES activists to create situations in which the actions of state officials and scientists became part of the culture of DES Action, even though the individual officials and scientists might not necessarily have viewed themselves as officially part of the movement.

Embodying the Challenge of DES Science Embodied health movements “typically include challenges to existing medical/scientific knowledge and practice,” working within or challenging the

A History of DESâ•… 23

system based on patients’ intimate, firsthand knowledge of their bodies and illnesses (Brown et al. 2004, 51, 56). DES activists worked in multiple ways to transform traditional assumptions and lines of inquiry regarding the effects of prenatal exposure to DES and approaches to treating DES-exposed people. The process was an iterative one. Beginning in the mid-1980s, DES activists initiated research and collaboration projects with university scientists. On the basis of their early studies, DES activists advocated for more federally funded research using new methodologies for defining “investigators.” They also challenged existing medical and scientific knowledge by generating research questions, recruiting subjects for studies, and communicating and connecting with recruited subjects during the studies. As their actions in preparation for and during the 1992 DES Workshop show, their participation in DES science raised doubts about the lines between science and nonscience, expert and layperson, and good science and bad science. In the mid-1980s, DES Action and the DCN contested existing medical and scientific knowledge by initiating and conducting their own research, beginning with surveys sent to readers of their newsletters that were resent at intervals through 2003. For example, the activists identified a gap between their intimate, firsthand knowledge of their bodies and the medical literature. As a result, DES Action distributed an informal health history questionnaire to readers of the DES Action Voice in 1984 “to help identify whether certain health conditions—beyond those already known—appear more frequently among DES exposed women and men than among nonexposed people. We want to document and count the stories that mothers, daughters and sons have been telling us.”23 Developed and compiled by DES Action member and epidemiologist Deborah Wingard and her students at the University of California, San Diego, the survey was intended to be a first step. Any “trends” suggested by the answers would be discussed “with scientists who could follow up with further studies.”24 In 1986, the DCN sent a questionnaire to readers of its DCN Newsletter “to clarify, for the DES Cancer Network, some important facts about your medical history and your ongoing concerns. In this way our files will be correct and up to date.”25 Within a few years, the DCN had collected anecdotal evidence of an increasing incidence of cancer recurrence among its members but could find no documentation of late recurrence of DES cancer in the medical literature. Thus, the group initiated a national research campaign to study its membership by joining with the Slone Epidemiology Unit at Boston University. It drew on the expertise of and a longstanding connection forged by epidemiologist Helmrich, who had worked at Slone for five years during the time she cofounded the DCN. When the study was complete, the director of the DCN, Braun, “car-

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ried the message ‘More DES research’ directly to the National Institutes of Health” in testimony during day-long hearings held by the NIH Task Force on Opportunities for Research in Women’s Health.26 On the basis of testimony given at the hearings, the Office of Research on Women’s Health organized a three-day conference on women’s health in September 1991.27 In conjunction with the conference, Braun and Nora Cody of DES Action arranged a meeting with the director of NIH (Dr. Samuel Broder) and NIH division chiefs in which they described what DES exposure is like for young women and men, the burden of guilt for mothers, and the evidence from animal studies of the effects of DES on the immune system (Braun 2001, xvi). That is, they interwove traditional scientific claims with those based on evidence from firsthand, intimate experiences of DES mothers, daughters, and sons. In response to these concerns, “and as a way to draw together researchers and share knowledge towards new avenues for research,” Broder proposed a DES Workshop, convened a planning committee, and invited DES Action and DCN to assist in the planning process of the 1992 DES Workshop.28 DES activists participated in the development of a vibrant field, and their success was one of many kinds of activism that led to federal recognition of women’s health as an important area of research in the 1990s (Ruzek and Becker 1999). Feminist scholars regard the formation of the NIH Office of Research on Women’s Health in 1990 as an “outstanding achievement” of women’s health activism. In addition to recognizing and supporting women’s health research, it required the inclusion of women in clinical trials, instituted the creation of a national research agenda on women’s health, and supported increasing women’s participation in biomedical research careers (Clarke and Olesen 1999, 15; Pinn and Chunko 1999; Ruzek and Becker 1999).29 The 1992 DES Workshop was a key moment in the DES embodied health movement. After the 1992 workshop, federal DES legislation was passed into law, and federal funding was provided for four research projects that continue to this day. In each of the different projects, activists and experts work together, although the particular form this collaboration has taken has varied from one project to another.30 Two projects involve continuing studies of the long-term effects of exposure to DES. In September 1992, the NCI awarded the first project five three-year research contracts, totaling nearly $3 million, for “Continuation of Follow-up of DES-Exposed Cohorts” to update and expand the existing studies of the long-term health consequences of exposure to DES.31 The study’s research team includes physicians, epidemiologists, researchers, and activists.32 The NCI’s study continues the clinical research begun in 1974 and brings together more than twenty-one thousand women and men “to

A History of DESâ•… 25

learn as much as possible about the long-term effects of DES exposure.”33 A joint effort of the NCI and researchers at five research centers, this study initially drew participants from eight different medical centers and consisted of five different cohorts.34 In his letter inviting DES Action to join the Steering Committee for this follow-up study, principal investigator Robert Hoover, chief of Environmental Epidemiology in the Division of Cancer Etiology at NCI, wrote, “you would provide the project with a valuable link to and communication with the DES exposed, features that should maximize our chances of success in an endeavor that I believe is truly important, not only for these exposed persons, but for our attempts to understand the etiology of hormonally-related diseases in general.”35 Since 1997, the NCI has sent newsletters to study participants summarizing research results, answering participants’ questions, and providing information about how to contact the coordinators of different study centers. Fostering communication and connection has expanded the researcher-subject relationship and has perhaps contributed to the high response rate. More than 90 percent of the study participants completed the questionnaires in 2006. The second study of long-term effects of DES exposure after the 1992 DES Workshop, “Follow-up of DES-Associated Clear Cell Adenocarcinoma,” was awarded to Herbst at the University of Chicago, who received a four-year grant from the NCI to continue to investigate the cause, risk, incidence, and long-term health effects of clear cell cancer, including the emotional effects of DES exposure in the survivors of DES-associated clear cell adenocarcinoma.36 Helmrich and Braun, the cofounders of DCN, worked “with the Herbst Registry to design the questionnaire and locate as many clear cell cancer survivors as possible through the U.S.”37 DCN Director Braun participated in planning the study, whereas epidemiologist Helmrich was one of the team of investigators, taking responsibility for examining the long-term health effects in relation to the different treatments for clear cell cancer (Helmrich 1997). The DCN remained in “regular contact with participants during the course of the study,” including contact with women newly diagnosed with clear cell adenocarcinoma who were located by the investigators. DCN was “able to talk to these women early on in the process of their treatment and hopefully helped them through some rough times” (Helmrich 1997, 3). The third major project initiated after the 1992 DES Workshop was educational. In its request for applications, the NCI stated that all grantees would be expected to work cooperatively, to participate in a “working group of medical experts and consumer representatives to present papers,” and to “propose innovative models for reaching unidentified and identified DES-

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exposed people and their health care providers.”38 In 1998, when President Bill Clinton signed the DES Reauthorization Bill, responsibility for a national DES education program was transferred from the NCI to the Centers for Disease Control (CDC [Braun 2001, 95]). The CDC launched a DES Update Campaign in 2002. This award-winning program sponsors a Web site and a toll-free hotline, and it hosted five teleconferences on DES research from 2003 to 2004.39 Basic science was a fourth area of federally funded research following the 1992 DES Workshop. Workshop recommendations included development of a mechanism for identifying and making available human tissue and blood specimens from DES-exposed people, development of cell lines from DES daughters with clear cell adenocarcinoma, and development of methods and animal models to screen for adverse effects following prenatal exposure to DES and other environmental endocrine disruptors (NIH 1992, 63–64). Alliances between citizens and scientists were more “distant” in the area of basic research than in the other three research areas. No citizen-scientist steering committees were formed for this work, nor were citizens members of the research teams. However, in 1995, representatives of DES Action (Pat Cody) and DCN (Braun) attended the opening of the Susan F. Hughes Laboratory, a joint product of the National Institute of Environmental Health Sciences (NIEHS) and Duke University, where “the DES Cancer Network and DES Action were praised€.€.€. for their active role in supporting continued funding for DES-related research and education, some of which contributed” to the new laboratory.40 Thirteen grants, totaling $1.5 million, were awarded for DES research in 1994 through the National Institute on Aging, the NCI, and the NIEHS. In addition, funds were awarded to the University of Chicago (Herbst) to determine the availability of tissue specimens (U.S. DHHS 1999, 84) and to the NIEHS and Duke University for retrieval of clear cell tissue to investigate molecular biomarkers in DES-induced cancer, to study osteoporosis in DES-exposed patients, and to complete a survey on DES sons.41 The four research areas were reviewed in 1999, during a one-and-a-halfday DES meeting planned by “advocates and researchers from academia and several government agencies” (U.S. DHHS 1999, 4).42 The composition of the Workshop Planning Committee, list of registrants, workshop program, and published Proceedings all reflect a broader and more inclusive field of action in the DES embodied health movement in 1999 than in 1992. DES activists were more centrally involved in planning and conducting the workshop, and they composed a greater proportion of the people in attendance than at the 1992 workshop.43 At the 1999 DES Workshop, DES mother Pat Cody, cofounder of DES Action, and Professor John McLachlan, who was at the time the director

A History of DESâ•… 27

of the Center for Bioenvironmental Research at Tulane/Xavier Universities, cochaired a discussion session about the state of DES basic research. McLachlan’s research on the effects of prenatal exposure to DES in mice was key to the DES science that demonstrated definitively “that chemicals [can] cross the placenta, disrupt the development of the baby, and have serious effects that might not be evident until decades later” (Colborn, Dumanoski, and Myers 1997, 66).44 In their summary of the discussion, Cody and McLachlan provided “background information” to the audience and noted that “the field of DES research is a pioneer in consumer-researcher partnerships. Long before NCI and other institutions and agencies routinely formed such partnerships, the DES community was well on its way to bringing together all key players and interested parties. As a result, the foundation of this community comprises three major contributors: health care providers, researchers, and consumers” (U.S. DHHS 1999, 13). Their joint work at the 1999 workshop and the background information they provided in their summary attest to the ways in which the new terms of work set out in the 1992 DES Workshop had become part of DES science by 1999. One of the new areas of study in DES science concerned endocrine disruptors.

Disrupting Endocrines In the 1970s, McLachlan had emerged as a “pivotal figure” in extending laboratory studies of DES to “investigate other DES-like effects,” although until the mid-1980s his study of environmental estrogens was considered “funky science” (Krimsky 2000, 11, 13, quoting from an interview with McLachlan). McLachlan moved back and forth between the worlds of mouse and human research and between the study of environmental and clinical estrogenic effects. Beginning in the late 1970s, McLachlan’s work in DES studies and endocrine disruptor studies connected DES activists with the multidisciplinary science through which the endocrine disruptor hypothesis circulated. When McLachlan became head of the Developmental Endocrinology and Pharmacology section of NIEHS in 1976, he organized a series of meetings to explore environmental estrogens using DES as a model of how other chemicals can interfere with the body’s hormone signaling system (Krimsky 2000, 25). He invited Pat Cody to participate in the first of these meetings, “Estrogens in the Environment,” in 1979, thereby initiating a collaboration between DES Action and NIEHS researchers that was sustained even after 1995, when McLachlan moved to New Orleans to direct the Center for Bioenvironmental Research at Tulane and Xavier Universities.45 The endocrine disruptor hypothesis is a “bold and unorthodox” insight developed in and from DES research (Krimsky 2000, 2). It broadens concerns

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about the effects of prenatal exposure to estrogens and estrogen-like substances by including their development and reproductive damage.46 The effects of DES on the developing fetus show that human bodies can mistake synthetic chemicals for hormones. Other synthetic chemicals, such as the pesticides DET, PCBs, and kemone, have similar “hand-me-down” effects (Colborn, Dumanoski, and Myers 1997, 33, 66). DES provided the link between endocrine disruptors in animals and humans, a critical link to establish in order to expand research, secure funding, and affect public policy about testing and regulation of agricultural and industrial chemicals: “The effects seen in in utero DES-exposed humans parallel those found in contaminated wildlife and laboratory animals, suggesting that humans may be at risk to the same environmental hazards as wildlife” (Colborn, Dumanoski, and Myers 1997, 262; Krimsky 2000, 27). It took some years and much activism before the endocrine disruptor hypothesis gained acceptance as a new branch of science. In fact, during the 1980s, the hypothesis “was scarcely acknowledged within the scientific community” (Krimsky 2000, 14).47 By 1999, overlaps between DES and endocrine disruptors were visible everywhere. In their opening remarks at the 1999 DES Workshop, for example, both speakers—Wanda Jones, deputy assistant secretary for Women’s Health from the U.S. Public Health Service’s Office of Women’s Health, and Congresswoman Slaughter—connected DES and endocrine disruptors. Louise Slaughter noted, “DES research is€.€.€. crucial not only for those women exposed to the drug, and for their children and grandchildren, but also for all who will benefit from the knowledge scientists will gain about estrogens, environmental health, and the way in which genes interact with our environment” (U.S. DHHS 1999, 7). Others at the 1999 workshop linked them together, too, attesting to the leadership of the NIEHS in “promoting and funding research on environmental estrogens, which recently [had] evolved to include endocrine-disruptive compounds” (U.S. DHHS 1999, 8) and putting forth the “concept of DES as a ‘research metaphor’ for estrogenic carcinogenesis and for endocrine disruptors” (U.S. DHHS 1999, 11).48

Summing Up Today, in addition to the four federally funded projects, there are screening protocols and practices; experts and centers of expertise for treating DES cancer at university medical schools and hospitals; research laboratories investigating the effects of DES using human and animal tissues; apparatuses of DES litigation and state and national legislation; and a highly organized, multilayered local and global social movement of DES activists. In these re-

A History of DESâ•… 29

gimes of practice, power is exercised from innumerable points, and knowledge and decisions about the clinical contours of DES emanate from local and unstable locations. The thirteen affiliates of DES Action—including a DES Sons Network and DES Action Third Generation Network—and the DCN-sponsored Web pages are connected to each other by their participation in DES science, as well as to an expanding world of embodied health movements. Although federal recognition of women’s health is a solid victory of the women’s health movement, becoming positioned inside, outside, and on the margins of federal policy and research arenas has also created new burdens and problems (Clarke and Olesen 1999, 16). These include hierarchies within the women’s health movement between those activists who have “sat at tables” and become familiar with bureaucratic routines and protocols and those who have not (“expertification”), and between those who have developed sophisticated knowledge of science and technology and those who have not (“scientization” [Epstein 2008]). Scientization and expertization can also create acceptance of biomedical hegemony over the definitional process of what constitutes a women’s health agenda even while defining priorities for specific diseases, a definition of “women’s health” only in terms of “reproduction,” and barriers to entering the movement (Epstein 2000, 2008; Inhorn 2006).49 The hybridity of approaches in this book and the continual return to fill in details of DES history through individual lives and texts mirror the hybridity of DES. The next chapter focuses on power and knowledge in DES science through the lives of three women who have had DES-related cancer. I begin by setting the context for understanding their experiences of the medical diagnosis and treatment of clear cell adenocarcinoma beginning in the late 1960s, and then I describe the sample, interview, and transcription procedures. I then trace “old” and “new” regimes of practice in DES cancer daughters’ stories.

2

K Narratives and Lives The Politics of Knowing for DES Daughters

T

his chapter explores how knowledge about DES is produced, how doctors and daughters exercise power in the production of knowledge, and how the field of power-knowledge has been transformed since the late 1960s. The ways women made sense of their DES cancer and the ways they interacted with their doctors and with medicine were shaped historically by and tied to developing and conflicting knowledges of DES cancer, to the emergence of a women’s health movement, and, most importantly, to organizations founded by women exposed to DES (DES Action and the DES Cancer Network [DCN]). These knowledge productions are reflected in the narrative accounts of DES cancer daughters. The “terrain of power and resistance” (Abu-Lughod 1990; Ortner 1995) for DES cancer daughters varies according to the historically specific contexts in which they discovered and responded to the news that they had vaginal cancer caused by DES. I explore multiple, unstable, overlapping, and intersecting fields in the lives of individual women who have had DES cancer by interviewing them, locating the women in particular medical and feminist contexts in order to highlight the presence and play of power in their relationships and responses to the news given to them by their doctors (Bell 1999). From among the twenty women interviewed, I focus on the experiences of three DES daughters who had cancer, how they learned of their exposure to DES and DES cancer, how they assumed the identity of “DES daughter,” and how their assumptions of this identity and their negotiations

Narratives and Livesâ•… 31

with their physicians participated in the construction and transformation of medical knowledge about DES. The term “DES daughter” is an identity that was put together after 1971, when Arthur Herbst, Howard Ulfelder, and David Poskanzer made the connection between prenatal exposure to DES and clear cell adenocarcinoma. “DES daughter” names and thus provides the possibility of understanding the effects of prenatal exposure to this synthetic estrogen and of developing a political collective identity among women exposed to it. Yet, “DES daughters” artificially lumps together those exposed earlier and later in a pregnancy and exposed to a range of different dosages of DES. Studies of DES daughters have demonstrated an association between dosage and timing in the effects of DES on the developing fetus and girls’ and women’s bodies decades later. Even the distinction between DES daughters who have had cancer (“DES cancer daughters”) and DES daughters who have not had cancer overly homogenizes each of the two categories. For example, two of the women in my study who had not had DES cancer had experienced so many serious reproductive tract disorders that both of them had had hysterectomies, whereas one of the DES cancer daughters had cervical cancer that had been treated with cone biopsies—she had not had a hysterectomy. The diversity in their experiences as “DES daughters”; the cultural, scientific, and political work accomplished with the term; and the positive and negative consequences accruing up to the point of my use of the shorthand grouping of “DES daughters” to describe their localized lived experiences are all dimensions of subjectivization in the DES embodied health movement and of individuals participating within, affected by, and circulating through this movement. In the late 1960s, obstetricians and gynecologic oncologists Ulfelder and Herbst treated seven adolescent girls with a very rare form of vaginal cancer— clear cell adenocarcinoma—at Massachusetts General Hospital in Boston.1 Before 1970, when Herbst and Ulfelder identified these individual cases as “a series,” only four cases of this form of cancer were reported in women under age thirty (Ulfelder 1980, 3008, 3009). Indeed, the seven cases “exceeded the total number of such cancers in this age group previously reported in the world literature” (Herbst and Cole 1978, 2). Such a rare disease clustering in such young women made the doctors suspicious. At about the same time their suspicions were raised, another young woman in the Boston area was diagnosed with the same cancer. Herbst, Ulfelder, and medical epidemiologist Poskanzer conducted a case-control epidemiologic investigation and the following year reported an association between prenatal exposure to DES and vaginal clear cell adenocarcinoma (Herbst, Ulfelder, and Poskanzer 1971).2

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Within a year, prenatal DES exposure was also connected with clear cell adenocarcinoma of the cervix (Herbst and Cole 1978, 2). Because the cancer had previously been reported only in older women, specialist physicians developed treatments for the girls based on their clinical experiences of performing radical hysterectomy and vaginal reconstruction for cancers of the vagina and cervix in older women (Ulfelder 1980; Herbst and Anderson 1981). Past strategies had included total or partial hysterectomy and/or local vaginal or cervical excision, and sometimes a combination of surgery with radiation. Because of the uniformly young age of their patients, Herbst, Ulfelder, and a growing number of surgeons who were identifying and treating young women with these cancers made efforts to preserve their fertility while at the same time preventing recurrences (Herbst and Anderson 1981). Ulfelder captures the sensibility of old regimes of practice in his presentation during the 1979 Annual Meeting of the Society of Surgical Oncology, which began with these words: “It is said that chance favors the mind that is prepared. This observation, attributed to Pasteur, surely fits the circumstances surrounding the discovery and elucidation of the complex of phenomena I will refer to as the stilbestrol disorders” (Ulfelder 1980, 3008). Ulfelder went on to report “no hesitation” in proposing what to do when he began to see the first few adolescent girls with very rare vaginal cancers. His proposal was based on his clinical experience almost twenty years previously, when he and his mentor had treated a two-year-old girl suffering from a different form of vaginal cancer.3 Today, depending on the site and spread of the tumor and the local medical culture in which a clinician works, clear cell adenocarcinoma in DES daughters is treated by partial or complete surgical removal of a woman’s vagina, radical hysterectomy, lymphectomy, and radiation (Herbst 2000). For the majority of women who lose their vaginas, surgical reconstruction is recommended, either at the same time as the initial surgery or at a later time, using parts of the women’s bodies for the reconstruction. One of the procedures for vaginal reconstruction uses a woman’s own intestine to make a “sigmoid neovagina.” Other procedures for reconstructing a DES daughter’s vagina include a “split thickness skin graft,” which uses skin from a woman’s buttocks or lower abdomen; the “omental J flap,” in which a cylinder is built using part of a woman’s peritoneum in conjunction with a skin graft; and the “gracilis myocutaneous flap,” which creates a new vagina using skin from a woman’s thighs. Another procedure involves constructing a vaginal pouch using a woman’s labia (Wheeless 1992).4 By 2007, approximately 760 cases of clear cell adenocarcinoma had been accessioned by the Registry for Research on Hormonal Transplacental Carcinogenesis; two thirds of them were associated with prenatal exposure to DES.5

Narratives and Livesâ•… 33

Finding DES Daughters I systematically recruited twenty DES daughters, ten who had had DES cancer and ten who had not had DES cancer. To identify daughters with a wide range of experience, I used intermediaries: clinics treating DES daughters, physicians specializing in the treatment of DES cancer, a class-action lawsuit, and DES Action.6 Each of these sources sent a letter to a random sample of potential subjects on my behalf, describing the study and asking them to contact me if they were interested in learning more about my work or participating in the study. At first, I excluded women from the study if I already knew them from my participation in the women’s health or DES networks. I was able to identify and interview seventeen DES daughters (ten who had not had DES cancer and seven who had had DES cancer) between 1982 and 1986. I identified three DES cancer daughters later in the study through contacts made when I participated in DES conferences and workshops.7 Over time, I became more enmeshed in the world of DES daughters, and my project began to change based on my knowledge of this world through my attendance at meetings of the DCN and DES Action and interdisciplinary DES conferences and workshops. At these conferences and workshops, I met informally with DES daughters and talked about my study with them. At two of these meetings, my DES research was part of the formal program. Often, DES daughters would volunteer for interviews. To complete the sample, I followed up on offers by three of the DES cancer daughters and invited them to participate in the study.8 Using these strategies, I recruited a purposive sample of young adult women exposed to DES on the basis of age and gynecologic history. In all, the twenty women who participated were between the ages of twenty-one and forty at the time of the interviews. Half of them were born between 1950 and 1954, four were born between 1955 and 1959, three were born before 1950, and three were born during or after 1960. Eight of them were married or in committed relationships, and the rest were single (two of them divorced). Four of the women had children. Their race and levels of education reflected the demographic characteristics of DES daughters nationally. All twenty women were white.9 Four had graduated from high school, ten had completed some college or had graduated from a two- or four-year degree program, and six had completed graduate programs. Sixteen of the women were employed. Ten of the women were Catholic (of the ten, one described herself as an ex-Catholic and another as a lapsed Catholic), nine were Jewish (one of the nine Jewish women described herself as “born, not practicing”), and one was Protestant. Seven of the women belonged to DES Action or the DCN; three of them were officers in one of these organizations at the state

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or national level. Eleven of the women had been plaintiffs in individual or class-action lawsuits; nine of these plaintiffs had had DES cancer. Two of the cases had been dropped, three had been settled out of court, and the rest were ongoing at the time of the interviews. Esther and Molly were among the group of women recruited through intermediaries.10 Esther developed cancer in the late 1960s. Her story exemplifies an “old regime” of practices, before the connection between prenatal exposure to DES and cancer had been identified, and before the name “DES daughter” had been given to women exposed to DES prenatally, at a time when vaginal cancer in premenopausal women was almost unprecedented. Molly developed cancer in the early 1980s, and her story exemplifies a “new regime” of practices, when care for DES was becoming institutionalized, and DES knowledge circulated among specialists and specialist clinics, women’s health movement organizations and publications, and law practices. Times had changed culturally and institutionally. Doctors no longer had sovereign authority in providing medical care, and patients were no longer passive victims of that institutionalized authority. Deborah, who developed cancer in the mid-1980s, was one of the three DES cancer daughters I interviewed after meeting her, talking with her about my study, and receiving an offer from her to become a subject in it. Like Molly, Deborah was also positioned in a new regime of practices, but she entered and navigated through different pathways than Molly did. These practices included our intersecting routes through DES as well as multiple centers of DES clinical and research expertise; overlapping fields of pathology, oncology, gynecology, endocrinology, biology, urology, and epidemiology; the National Institutes of Health; the Office of Research on Women’s Health; and DES Action and the DCN.

Interviewing DES Daughters After each woman signed the consent form, I conducted two focused, indepth tape-recorded interviews, the second interview within a month after the first interview. All the women completed a biographical questionnaire between the first and second interviews. Each face-to-face interview lasted approximately one and a half hours. I began the first interview by asking each woman how she found out she was a DES daughter and what that was like. I used an interview guide that included the following topic areas: how she learned of her exposure and what this was like; how her experience had changed over time; whether she had had any medical problems she associated with her exposure to DES and how she had responded to this; how she managed her medical care; which relationships with others (in her family, friend-

Narratives and Livesâ•… 35

ships, and work and school situations) had been important to her in relation to DES; what contact (if any) she had had with other DES daughters; and her vision of the future regarding work, family, and so forth. I listened carefully to the tape between the first and second interviews to ensure that all the topics in the interview guide would be covered by the end of the second interview and to identify any topics or questions I wanted to pursue more deeply in the second interview. Typically, I began the second interview by asking whether she had any “reactions” to the first interview. My approach to the interviews changed over the course of the study, as my conceptions of my position as an interviewer and knower changed, themselves reflections of transformations in the sociological context in which I interviewed the women and interpreted the interviews. In the early interviews with DES daughters, I listened carefully without interrupting, allowing the women to direct the flow of the interview (pace, topics, topic shifts), and remained (if not entirely neutral) at least noncommittal, to avoid influencing the interviews and introducing bias into the collection of my data (Bell 1988). Although I made no changes to the interview guide or to the practices of listening carefully and allowing the women to direct the flow of talk, during later interviews I became less concerned about maintaining distance and neutrality. I also became more open with the interviewees about the positions that informed my study (Bell 1999; Haraway 1988; Reinharz 1992). As I became accustomed to talking with DES daughters about my ongoing work, I felt more comfortable about being candid with them during the interviews. I met Deborah, for example, at a DES conference. Several months after we met and she had offered to be interviewed, I asked her to participate in my study. In the course of this conversation, as well as during the interviews, I found myself challenged by her forthright requests and her inquiries about and responses to my work, which were beyond those I had received from the other women I interviewed. For example, before agreeing to an interview with me, Deborah asked me for a copy of an article I had published about DES daughters, which I sent to her to read before the first interview (Bell 1988). My shift toward a less distancing interview style led me to be more flexible and open with Deborah than I had been in the earlier interviews. Deborah became a more active collaborator with me than women I had interviewed previously. The precise meaning of her active collaboration was not something I worked out in advance of meeting her but emerged in the ongoing interactions between us over the course of the two interviews (Mishler 1999). Our negotiations before, during, and after the interviews reflected these transformations in the worlds of DES and sociology. In 1992, partly as a reflection of my changing approach to the interviews, I wrote to two of the DES cancer daughters I had already interviewed—one of them was Esther—and asked them if they would be willing to participate

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in a third interview with me. Both responded positively. New regimes of DES practices influenced this choice, including my collaboration with psychiatrist Roberta Apfel, inspired by the discourse of gynecologic oncology at the 1992 DES Workshop that we attended (Bell and Apfel 1995),11 connections among DES cancer daughters through the DCN, and the availability of the DCN as a new source for recruiting DES cancer daughters. Material from these interviews was incorporated into our published (Bell and Apfel 1995) and unpublished papers.12

Turning Talk into Text Analysis of interview narratives hinges on translating talk into texts. Selecting details of talk for transcription and choosing transcription protocols are not straightforward processes. Translations are interpretive practices that begin with the transcriber listening closely to tape recordings of speech and continue with the transformation of what is heard into carefully prepared transcripts (Mishler 1999). Transcripts of my interviews with DES daughters include the questions asked and the answers given—that is, they include my “talk” and the DES daughters’ “talk.” They preserve false starts, hesitations, and repetitions, presenting each clause on a separate (numbered) line. Brief pauses, repeated words (e.g., “I—I”), or omitted words or parts of words are indicated by a dash; pauses that last longer than a couple of seconds and nonverbal sounds that accompany speech are identified in italics and placed in parentheses: “(pauses),” “(inhales).” Words or syllables that are drawn out are shown as double letters separated by an apostrophe (e.g., “a’and”). Emphasis on a syllable of a word is indicated by italics. Raised pitch at the end of a word is shown with a question mark (e.g., “day care?”). Inaudible or unclear words are identified in bracketed italics: “[unclear].” To preserve shared construction of the narrative between narrator and listener, nonlexical utterances (such as “mhm”) and discourse markers (such as “y’know” and “I mean”) are included, and speakers are identified as, for example, “S” (for me) and “E” (for Esther). Where several words have been omitted, an ellipsis has been inserted; where several lines have been omitted, a line of spaced dots (approximately the length of the line above it) has been inserted. To preserve anonymity, pseudonyms have been used; identifying details, such as the names of people and places, have been removed (e.g., “[my doctor]”), and dates and ages have been changed. These transcription practices reflect the narrative theory that has guided my research (Bell 1999, 2000, 2004). The decision to transcribe and analyze the interviewer’s talk in addition to that of the interviewee is based on an understanding of narratives as stories

Narratives and Livesâ•… 37

that are jointly produced through “a complex sequence of exchanges and negotiations” about what to talk about and how (Mishler 1999, xvi). Tellers explain the “multiplicity of projects in which [they] are always engaged, and the multiplicity of ways in which those projects feed on as well as collide with one another” (Ortner 1995, 191). Nevertheless, narratives are not just the stories of tellers, providing “hyperauthentic version(s) of [their] experiences or selves” (Atkinson 1997, 343). They are the collaboration of tellers and listeners who are “social actors” (Langellier 1989). The DES daughters’ narratives are “socially situated actions” performed and coproduced in interviews. Thus, their interpretation must include the order of exchanges and utterances of both participants as mutual understandings are negotiated and meaning is produced (Mishler 1999, 19).

Esther I begin with Esther, a woman from the United States who had DES cancer in the late 1960s. At the time that I first interviewed her, in the early 1980s, Esther was thirty-seven years old and had a part-time clerical position. She was married for the second time and was living happily with her husband, adopted children, and stepchildren in a single-family home in a suburban development. As I walked to Esther’s front door, I passed signs of family life—a basketball hoop and a dog tethered beside the house. Esther greeted me at the door and walked me through the living room, past upholstered chairs and a couch, to the kitchen table, where we sat during the interview. Her teenage son was in the basement working on a carpentry project. Sounds of an electric tool, a saw or drill, whined periodically, reminding us during the interview that Esther’s quest for motherhood had ultimately been successful (although not in the way that she had imagined as a young wife) and reminding me again each time I listen to the recording of Esther’s account. At the time of the interview, Esther had recovered from her DES cancer; eight years later, when I returned to interview her again, however, I learned that she had had a recurrence. The knowledge of the recurrence haunts my interpretation of the following narratives (all from my first interview with Esther), during which neither of us knew what lay ahead for her (Bell and Apfel, 1995).

Esther’s First Narrative: “They said it was a tumor / that was very very rare” 001 Susan: what I’d like to start with 002 is to ask you 003 how you found out you were a DES daughter

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004 and what that was like for you 005 Esther: (inhales) that’s really a hard one 006 because—when I found out about 007 what I had 008 there was no such thing as a DES daughter 009 S: mhm 010 E: so this was way before DES 011 S: mhm .......... 012 E: at the time when I had—this 013 they said it was a tumor— 014 that was very very rare 015 S: mhm 016 E: that was how they put it— 017 but n’nobody went into any detail about drugs 018 and that it could have come from this that or anything— 019 at least not to me 020 of course nobody told me I had cancer either— 021 S: mhm 022 E: I mean I was just twenty-two 023 S: mhm 024 E: so a lot of things that went on 025 were hidden from me— 026 by [my doctor] and my parents and my husband 027 S: mhm 028 E: twenty t’twenty yeah twenty-two— 029 so I can’t—honestly say (inhales) 030 S: mhm 031 E: that they didn’t know a lot of things 032 ’cause there were a lot of things 033 that were just kept— 034 we just didn’t discuss 035 S: mhm .......... Esther and I jointly constructed a narrative about her “very very rare” tumor (line 014). At first, I asked her the “wrong” question: “how [she] found out [she was] a DES daughter and what that was like for [her]” (lines 003–004). Even though this is the open-ended question with which I began all the interviews, in Esther’s case it was not the one that enabled her to tell me how she discovered she had cancer, how she was treated for it, and how she responded

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to the knowledge/treatment. My question assumed medical knowledge and a language (“DES daughters”) that reflected understanding the link between prenatal exposure to DES and reproductive-tract cancer during what had been a time of great uncertainty. At the time of her diagnosis, it had not yet been shown that DES crossed the placenta, disrupted the normal development of a fetus, and produced effects that would appear many years later. Esther’s first response took me back to that time and educated me about the mystery of her condition and how little had been known about it. I listened actively to Esther’s response, frequently uttering “mhm” to signal that I was following (listening to and understanding) her and to encourage her to continue. The language in the first part of the narrative is vague, conveying Esther’s ignorance of the situation and medical ignorance of the DES-cancer link. Esther was an uninformed patient. Nobody told her she had cancer or involved her in the details of her medical care. She repeats vague words and phrases to display her isolation from the knowledge and discussions of others: “n’nobody” (line 017; see also line 020) went into detail or told her she had cancer; “a lot of things” (lines 024, 031, 032) were hidden from her or were not discussed with her. Especially in contrast to the use of direct reported speech later in the narrative, Esther’s use of indirect reported speech (“they said it was a tumor / that was very very rare” [lines 013–014]) is another strategy that helps Esther build the case that her doctor, parents, and husband allied together to hide things from her (lines 024–026). Esther was not told what “they” did know: that “it could have come from this that or anything” (line 018), or even that “they didn’t know a lot of things” (line 031). Her explanation for her ignorance was the failure of others to tell her, and her explanation for that failure was her youth. For emphasis, she repeats her age (“I mean I was just twenty-two” [line 022]; “twenty t’twenty yeah twenty-two” [line 028]). Esther’s meaning is a bit ambiguous here. It may be that her doctor, parents, and husband kept information from her because they believed that she was too young to understand it. An alternative explanation is suggested by a reference that Esther makes later in the narrative, in which she connects her age with her innocence: “and I was young / I mean I didn’t know / and I had never had anything wrong with me” (see lines 138–140, below). It could have been that they kept the particulars from her to protect her innocence. In any case, Esther’s explanation for her lack of information about what “they” (lines 013, 016) knew rests on her age. This paternalistic and individualistic explanation is consistent with (and serves to strengthen) the meaning that she was constructing in her narrative—one of heroic biomedicine, in which sovereign physicians made decisions on behalf of their patients. Nevertheless, the story is more complicated than Esther’s narrative makes it appear. By choosing not to tell her that she had cancer, Esther’s caregivers

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were responding not only to what they might have perceived as her individual needs but also to dominant cultural discourses in medicine about revealing diagnoses to cancer patients. In the early 1960s, physicians seldom informed their patients of the actual or complete diagnosis of cancer. By the late 1970s, physicians had reversed this strategy. Two well-known articles published in the Journal of the American Medical Association eighteen years apart document a profound transformation in medical practice with respect to communicating the diagnosis of cancer at the time that Esther was diagnosed with vaginal cancer. In the early 1960s, almost 90 percent of physicians responding to a questionnaire stated that they preferred not to tell their patients that they had cancer (Oken 1961). Even those few who opted to tell patients generally used euphemisms, such as “‘tumor,’ with strict avoidance of the terms cancer, malignancy, and the like” (Oken 1961, 1123). Physicians revealed “as little as possible in the most general terms consistent with maintaining a patient’s cooperation in treatment” and hope for recovery (Oken 1961, 1123). By 1977, in response to the same questionnaire, 97 percent of physicians stated that they preferred to tell cancer patients of their diagnoses, and 100 percent stated that “the patient has the right to know” (Novack et al. 1979, 897–899).13 Esther’s physician responded to her “very very rare” tumor using the then-dominant cultural discourse of nondisclosure. After the first part of Esther’s narrative, I respond that I understand her by asking her the “right” question: “how did you find out that you had a tumor / how did that come about?” (see lines 101–102, below). She replies with what I thought I had been requesting at the start of the interview: a story with a recognizable, patterned structure.

Esther’s Second Narrative: “And he told me him—all by himself / and I went hysterical” 101 Susan: how did you find out that you had a tumor— 102 how did that come about? 103 Esther: I was 104 when I was first married 105 I went on birth control pills 106 before I got married— 107 and I um— 108 about two months before I got married 109 that was the first time I went to—the gynecologist 110 and I got my birth control pills 111 and I was gonna get married 112 and the whole bit (inhales)

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113 and then when we decided 114 we were gonna have children—(tch) 115 I went off the pills 116 and my period was just not regular 117 I was bleeding all the time weird times 118 and I had pain when I had intercourse— 119 so—I went to a doctor in—[hometown] 120 who was I guess—a pretty smart guy (laughs) 121 ’cause he went 122 and he said— 123 “this looks like something— 124 that you should go—t’to [the big city] for 125 I don’t think I should handle this”— ................................ 126 and I—I still remember the first visit 127 he just said to me um 128 “I wan— 129 I have to go in and explore” 130 and he said 131 “you can go home— 132 until I can get you a bed 133 and you’re coming right in” 134 and I thought it was a little weird 135 S: mhm 136 E: you know 137 but [unclear] nobody else thought it was all that 138 and I was young 139 I mean I didn’t know 140 and I had never had anything wrong with me 141 so I just assumed it was the way things worked— 142 so—when he operated 143 when he went in to explore 144 he found that I had the tumor and that 145 but he um he didn’ 146 he—he came in the room 147 and he told me 148 that there was something in there 149 and he wasn’t sure 150 until he actually did surgery 151 what he was gonna have to do 152 what he was gonna have to remove

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153 but—that—he knew 154 he was 155 I was gonna have to have a hysterectomy 156 and that uh—if he had to take more things out— 157 he’d have to do it— 158 and that was (yawns) 159 and I was twenty-two 160 and he told me him—all by himself— 161 and I went hysterical At the beginning of the story, Esther orients me to time, place, circumstances, and characters: “when I was first married / I went on birth control pills / before I got married / and I um / about two months before I got married / that was the first time I went to—the gynecologist / and I got my birth control pills / and I was gonna get married / and the whole bit” (lines 104– 112). After orienting me, Esther tells me what happened, in a sequence of narrative clauses beginning with “and then when we decided / we were gonna have children” (lines 113–114) and ending with her response to the doctor’s diagnosis and plan for treatment of her cancer, “and I went hysterical” (line 161). These clauses are interspersed with evaluations in which Esther comments on, suspends, and interprets the meaning of her story to me. When Esther began her story, I listened to her in almost complete silence. I had established my willingness and ability to hear what she had to say. We had established her authority as a knower, and we had found a form of speaking and listening that was mutually expected and compatible (Bell 1988). Esther’s narrative is infused with discourses of old regimes of practice. The language that Esther uses in her narrative reflects, ratifies, enforces, and elaborates on these practices. In the late 1960s, Esther left the suburbs and her private physician to be operated on in the city by a surgeon who practiced heroic medicine at one of the elite U.S. teaching hospitals, where people came for treatment from all over the world. As Esther describes him, her surgeon was a hero: He moved swiftly, waiting only until he could get her a bed (lines 131–133); he moved decisively, despite his uncertainty about how to treat her “very very rare” tumor (line 014); and he spoke to her bluntly, without giving her many details (“he knew / he was / I was gonna have to have a hysterectomy / and that uh—if he had to take more things out / he’d have to do it” [lines 153–157]). Esther’s response to the surgeon’s news was to become “hysterical” (line 161); her narrative dips into a dominant cultural stereotype of women that circulated in medical and popular cultures for centuries. Esther positions two types of gendered knowledge against one another: the surgeon’s dispassionate, logical, disembodied knowledge and her

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own passionate, illogical, embodied knowledge. His way of knowing carried more weight than hers. She accepted his plan of action without question: She was incapable of questioning it, because she was hysterical, and no one else was there to question it (“and he told me him—all by himself” [line 160]). Esther was alone with her doctor and the knowledge he gave her. The information the doctor presented overwhelmed her, rendering her powerless and passive. Esther’s account of their interaction and her physician’s transmission of information positions him as the powerful and active surgeon and her as the powerless, passive patient. Esther’s surgeon removed her vagina, bladder, urethra, uterus, and right ovary and fallopian tube and constructed a new vagina for her using tissue from her intestine. She was hospitalized for a month. Although at first Esther, who was unaware that her problem was life-threatening, thought her physician’s swift actions were “a little weird” (line 134), “nobody else thought it was” (line 137). She does not specify who “nobody” (lines 017, 020) refers to. Perhaps (most likely) she means her parents, her husband, and the doctor himself. The world Esther describes was small and confined, containing only her family, her physicians, the hospital, and Esther herself. This environment was the individualized, privatized old regime of biomedicine. Initially, sovereign physicians in old regimes of practice did not connect DES with vaginal cancer or conceptualize the girls and young women they treated as “DES daughters.” They did not yet know that a synthetic estrogen, such as DES, could cross the placenta and disrupt the development of human bodies. Esther, like all women who had DES cancer before 1971, had a mysterious, extremely rare cancer of the vagina that was almost completely unknown in premenopausal women.14 In Esther’s account, the use of such words as “things” and “it” sharpen the sense of mystery. At the time, few if any counterdiscourses to medical sovereignty and traditional patienthood existed. No organized women’s health movement provided an alternative vision and supported resistance. For Esther, as for other women who sought medical care, no one was leading the way in challenging, questioning, or even delaying medical care. Few discourses of medicine existed other than that of all-knowing, heroic physicians and compliant, innocent patients. At the time, “a woman who placed herself under a doctor’s care had the duty to do what she was told” (Morgen 2002, 11). Feminist discourses of health education, advocacy, and legal abortion emerged in 1969, when “radical activism was transforming the political landscape of the United States” (Morgen 2002, 3). By the early 1970s, “a sense of collective identity within the women’s health movement” was palpable locally and nationally (Morgen 2002, 37). These changing, contested aspirations and understandings that infused the women’s health movement coin-

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cided with new regimes of practice that connected prenatal exposure to DES with vaginal cancer.

Molly At the time I interviewed Molly, she was thirty-one years old and had been diagnosed with DES cancer about five years earlier. Molly and I met in an office loaned to me for the interview, because Molly did not have much privacy in her home, and I was living a few hours’ drive away; the office was a short commute for her. When she arrived at the office in her blue jeans and red sweatshirt, my first thought was that she looked desperately thin.15 Molly grew up in what she describes as a working-class Catholic family, and, like three other women in my study who did not have health insurance, her surgery was paid for with public funds. At the time of the interview, she was not employed. Quite recently, she had settled a lawsuit against manufacturers of DES, receiving a sum of money in exchange for her silence about the details of her “case,” an exchange that is typical for DES daughters.16 In the narrative that follows, she tells me how she found out she was a DES daughter as well as how she learned that she had vaginal cancer.

Molly’s First Narrative: “I knew immediately / it was a tumor / I just had this strange feeling” 201 Molly: I was twenty 202 and I was in college 203 and I’d met someone 204 I went out with him for three years 205 the whole time I was in school— 206 so when it came time to think about birth control 207 I didn’t know anything about it 208 because I came from this very Catholic background 209 and I had 210 you know I bought a copy of Our Bodies, Ourselves 211 read that 212 so I went to€.€.€. one of the first women’s clinics in the city 213 I went over there 214 and I was examined by this woman 215 who was Spanish 216 and she was doing her residency in this country 217 and um she told me 218 she had never seen such a terrible case of erosion and uh adenosis

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219 which I didn’t know what it was at that time 220 and she told me 221 to ask my mother 222 if I had been DES exposed 223 which I did 224 my mother didn’t know 225 what I was talking about 226 so she talked to her obstetrician€.€.€. 227 and he said 228 he would look up the records 229 and he found out 230 that every one of her children she had been given DES with 231 when she was carrying them 232 and um this woman referred me to a [DES] clinic€.€.€. 233 they were given federal funding at the time 234 this was probably—around ’75 maybe ’74 ’75— 235 and I went there 236 and um they told me 237 I had definitely been DES exposed 238 and I had a cervical erosion and adenosis .................................... 239 I just kept going to her uh once a year well once every ten months—(tch) 240 until I was approximately almost twenty-six— 241 and um—. . . I was using my diaphragm one day 242 I was twenty-five almost going on twenty-six 243 it was September of ’81 244 and I had been assured by everyone at [the DES clinic] 245 that for some reason as soon as I hit twenty-six 246 it would start to reverse itself 247 and I would probably be cured of adenosis or erosion 248 and it seemed to be doing that 249 I was—the discharge was lessening 250 my periods were always crazy very erratic 251 I could never tell anything about them .................................. 252 so anyhow that was starting to alleviate 253 they were starting to become more normal 254 um the erosion was starting to lessen 255 and then one day I was trying to insert a diaphragm 256 and uh it wouldn’t go in

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257 so I felt around 258 found this very hard protruding lump 259 I knew immediately 260 it was a tumor 261 I just had this strange feeling 262 so I called [my doctor] 263 and she seemed concerned at [the DES clinic] 264 and uh I told my sister 265 I didn’t tell my mother anything 266 ’cause I knew 267 she’d go crazy 268 so uh—(tch) I made an appointment at [the DES clinic] 269 I think it was for a manual exam the next day 270 and [my doctor] said 271 it was definitely suspicious 272 and she was worried about it 273 and she took me 274 I think the next day—. . . 275 and she was very worried about it— 276 so she did surgical [day care?] (coughs; clears throat) 277 and she called me the next morning 278 and told me 279 it was uh clear cell andiocarcinoma, adneocarcinoma17 280 so—that was that (laughs; pauses) Molly’s account is situated within a new regime of DES practices. By the mid-1970s, medical science had produced knowledge about the link between prenatal exposure to DES and the occurrence of reproductive tract cancer many years later. New words and phrases, such as “DES daughter,” “ask your mother,” “adenosis,” and “vaginal adenocarcinoma,” had entered the vocabulary of gynecologists, oncologists, pathologists, epidemiologists, young women, and their mothers.18 In 1974, the National Cancer Institute (NCI) and the American Cancer Society initiated a national cooperative program to investigate and to treat the effects of prenatal DES exposure and began to enroll “at least 2000 young women with documented DES exposure in utero and at least 500 unexposed participants” (Labarthe et al. 1978, 454). The program, DESAD (the National Cooperative Diethylstilbestrol Adenosis Project), was associated with elite medical centers in the United States and operated by members of an emerging community of DES specialists. These experts had begun to establish an array of protocols for monitoring and caring for DES daughters. Guided by a steering committee that met monthly

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as well as standing subcommittees on gynecology and pathology, colposcopy and cytology, design and analysis of recruiting and monitoring participants, and professional and public relations, DESAD circulated “DES” and “DES daughters” through new networks of power and knowledge. Decisions emanated from multiple unstable locations. In Molly’s case, a young physicianin-training at a women’s clinic recognized signs of DES exposure (“a terrible case of erosion and uh adenosis” [line 218]) and told her “to ask [her] mother / if [she] had been DES exposed” (lines 221–222). This physician referred Molly to one of the federally funded clinics, where the diagnosis of DES exposure as well as her identity as a DES daughter was confirmed. At the DESAD clinic, the woman who became Molly’s physician worked in an emerging community of DES specialists. Molly’s account is also located in the women’s health movement, already another node in the DES network. The women’s health movement drew its inspiration from women’s liberation, in which women in many different sites imagined “new ways of thinking about their bodies and taking control of their reproductive lives” (Morgen 2002, 11). The growing anger of many ordinary women “about frequent mistreatment by a mostly white, privileged, and male medical profession,” coupled with their growing sense of ability and entitlement, “helped to spark numerous initiatives, from self-help groups to women controlled health centers” (Norsigian 1996, 81). At this stage of the women’s health movement, relationships between physicians and feminists were sharply oppositional: medical knowledge versus experiential knowledge, physicians versus patients, men versus women. Although it emerged from multiple sites almost simultaneously, the beginning of second-wave activism in women’s health is usually dated from the publication in 1970 of Our Bodies, Ourselves, a newsprint booklet “that changed the framing of women’s health across the globe” (Clarke and Olesen 1999, 14). The authors of Our Bodies, Ourselves “turned radical thought into radical text€.€.€. [and used] the weapons of paper and ink to overcome distance” between women in different locations (Morgen 2002, 21). The evolving discourse of feminism took place and circulated through books and magazines, advocacy for the liberalization of abortion laws and other health policies, and health care by women for women in women’s clinics (Mansbridge 1995; Morgen 2002). It was when thinking about her birth control options during this period that Molly first identified herself with the women’s health movement. She repeats this identification as a feminist and a participant in the women’s health movement to me through her narrative, in which she actively responds to the ideologies of the movement and discusses her experience using the knowledge and services produced by it. In the early 1980s, when I interviewed Molly,

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Our Bodies, Ourselves had already become an icon of the women’s health movement. By telling me she had read the book and had chosen to go to one of the first women’s clinics in her city, where she saw a woman physician in the early 1970s, Molly lets me know that she participated in the women’s health movement at an early stage of its development. She gives me her feminist credentials and shows me how feminism empowered her. During the interview, I do not respond to Molly by telling her that I had worked in a women’s clinic and was an author of the “Birth Control” section in a recent edition of Our Bodies, Ourselves. Although this could have become a topic in the interview and an opportunity to explore how we were both “insiders” within the women’s health movement, I choose to remain an “outsider” to her. I remain silent about this connection and continue my feminist interview strategy of listening closely to her and encouraging her to guide the flow of the interview. Ironically, by not making our feminist health connections an explicit part of the discourse and by distancing myself from her, our relationship may have become yet another episode in her experience of isolation. Molly’s narrative also displays how her identification as a feminist and with the women’s health movement played out in her responses to medical knowledge. Perhaps the most significant opposition contained in Molly’s narrative concerns her critique of medical knowledge about DES cancer. At the time she was diagnosed with cancer in 1981, the clinical and epidemiological records about DES showed that adenosis was not always a precursor to clear cell adenocarcinoma (Herbst 1981). In fact, the evidence showed that over time the adenosis began to reverse (or “heal”). This evidence supported the medical view that DES cancer seemed to occur most often in women between ages seventeen and twenty-one and then decline rapidly (Robboy, Young, and Herbst 1982). DES cancer was site- and age-specific. As Molly says, she had been “assured by everyone [at the DES clinic] / that for some reason as soon as [she] hit twenty-six / [the adenosis] would start to reverse itself” (lines 244–246). And yet when Molly found “this very hard protruding lump / [she] knew immediately / it was a tumor / [she] just had this strange feeling” (lines 258–261). Instead of dismissing her feeling, Molly took it seriously and called her doctor. The doctor diagnosed her tumor as clear cell adenocarcinoma. According to Molly’s narrative, medicine neither predicted her DES cancer at age twenty-six nor discovered it during her regular checkups. To put it bluntly, Molly’s experience with her body was a better, truer source of knowledge than her physician’s experience and knowledge of the physiology of DES-exposed vaginas. According to Molly, her experience was more valuable and authoritative than the voice of medicine for understanding her health and disease.

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Here, her account resonates with the point of view of Our Bodies, Ourselves: Women’s daily experiences of their bodies are at least as trustworthy (if not more trustworthy) than the abstract, disembodied knowledge of medicine (Davis 2007). Thus, when Molly found a “very hard protruding lump” in her vagina, she “knew immediately / it was a tumor” (lines 258–260). Molly’s knowledge that something was wrong and what that something was came from her experience of touching and exploring her own body. She expressed her knowledge in the language of her body: Her “strange feeling” was that the lump she found was a (malignant) tumor (lines 259–261). According to the counterdiscourses of the women’s health movement, personal experiences “did more than illustrate medical viewpoints on health and sexuality: they expanded, enriched, and challenged them” (Kline 2005, 87). Whereas for Esther the voice of medicine was sovereign, for Molly personal experience was just as valid as textbook truths, challenging the knowledge differential and the power between doctors and patients. Molly’s narrative reverses the nexus of power and knowledge from that reported in Esther’s narrative. When it came time to think about birth control, Esther went to a gynecologist, whereas Molly bought a copy of Our Bodies, Ourselves. When Esther “was bleeding all the time weird times” and having pain during intercourse, she returned to her “pretty smart” gynecologist, who sent her to a specialist (lines 117–120). When the specialist told her he needed to “go in and explore” her body, she assumed this was just the way things worked (line 129). After he explored her body and told her she “was gonna have to have a hysterectomy,” she did not question his plan; she “went hysterical” (lines 155, 161). By contrast, when Molly found a “very hard protruding lump” in her vagina, she “knew immediately it was a tumor,” felt that it was malignant, and trusted her intuition (lines 258–261). Although she does not acknowledge it, Molly’s articulation of her feeling also drew from available medical discourses of DES that by then had identified malignant tumors as clear cell adenocarcinomas caused by prenatal exposure to DES. Like Esther, Molly draws attention to age as an important theme in her narrative, and like Esther she accomplishes this with repetition (“until I was approximately almost twenty-six” [line 240], “I was twenty-five almost going on twenty-six” [line 242], “as soon as I hit twenty-six” [line 245]). But whereas age is a narrative strategy that positions Esther as young and innocent, for Molly, age is significant because of its use in medical understandings and approaches to care for DES daughters. Molly’s repetitions of her age function as orientations to her story about finding the lump/tumor and as feminist critiques of medicine. She tells me about her age three times, and all three times she suspends the action in her story to provide this orientation. Narrators often use this device to create drama and to prepare listeners to pay

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close attention so they do not miss the “point” of a story (Labov 1972). In this case, the point is simultaneously that Molly developed DES cancer at age twenty-six, that she discovered it in the context of her lifeworld, and that it was an unexpected shock to her and to the medical experts. Also repeated in this narrative are the words “erosion” and “adenosis”: “she had never seen such a terrible case of erosion and uh adenosis” (line 218); “and I had a cervical erosion and adenosis” (line 238); “and I would probably be cured of adenosis or erosion” (line 247); “um the erosion was starting to lessen” (line 254). According to medical logic, the next time Molly told me about erosion and adenosis, it would be to say that she was “cured” of them—but the story has an unexpected ending: The adenosis turned into a malignant tumor. Molly had clear cell adenocarcinoma. Molly’s narrative complicates oppositions even as she constructs them: The physician who treated her for many years and was wrong about the adenosis was a woman. Early in the women’s health movement, along with the celebration of women’s ways of knowing their bodies was a claim that women physicians would understand women’s bodies better than men physicians (Zimmerman 1987). However, in Molly’s narrative, the woman physician spoke in the disembodied voice of medicine, not in an embodied voice like her own, suggesting that there are significant differences between women.19 In a narrative immediately following this one, Molly further complicates her story about the relationship between gender, knowledge, compassion, and influence. The physician she chose to become her surgeon was a man, and she chose him because he was a compassionate person, and he was willing to do the surgery the way she wanted.

Molly’s Second Narrative: “Uh I want some input in the surgical procedure / or I’m not going here” 301 Molly: but um—(tch) I just totally disagreed with her course of treatment 302 and she would not let me put any input into what she was gonna do to me at all 303 she definitely recommended chemo 304 and I wanted no part of it whatsoever— 305 um I wanted a bikini incision 306 not because I’m vain but 307 well maybe it’s because I am vain 308 because I was only twenty-five years old 309 and I didn’t want to have to look at a scar like that for the rest of my life

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310 and I was informed enough to know there are alternatives 311 but her whole attitude was very very empirical and very much domineering 312 and “you will do it my way 313 or you won’t do it at all” 314 and I said 315 “look it I’m going through enough emotional trauma 316 uh I want some input in the surgical procedure 317 or I’m not going here—” ....................... 318 um so I just wouldn’t let her do the surgery 319 it was like 320 I knew I was facing enough emotionally 321 and I did not want someone with no empathy no compassion no bedside manner 322 who treated me like a piece of meat 323 and that’s exactly how this woman made me feel 324 doing the surgery 325 so uh I asked her for the name of someone 326 where I could get a second opinion 327 and she would not give it to me ............................ 328 I find it very strange 329 that I had to go to a man 330 to find some compassion 331 whereas you know I’ve always believed in women 332 women being surgeons 333 and [she] just thought 334 that I was slapping her in the face as a woman 335 because I wouldn’t let her do the surgery ................................... 336 but uh—you know she really told me 337 she told me 338 “this is like a slap in the face 339 I’m a woman you’re a woman 340 you’re supposed to be a feminist 341 I’m a surgeon 342 I came up in the fifties 343 when it was very hard for a woman” 344 I said 345 “I understand that—”

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346 but I mean for a woman she had the worst attitude 347 I’ve ever come across in my life This narrative begins with a confrontation between Molly and her physician at the DES clinic—the woman doctor. Molly knew what she wanted, trusted her ability to make informed decisions, and challenged her physician’s authority. The way she tells this story consists of requests and rejections. This form of exchange frequently escalates into violence because one person denies another’s “legitimate right to make a request; the rejection threatens the social status of the requester and leads to the violent reaction” (Mishler 1986, 85). In Molly’s narrative, (verbal) violence resulted. In addition to surgery, Molly’s physician “definitely recommended chemo” (line 303). Molly rejected this recommendation (“and I wanted no part of it whatsoever” [line 304]). Molly wanted her physician to use one technique (“um I wanted a bikini incision” [line 305]), and her physician rejected that request (“you will do it my way / or you won’t do it at all” [lines 312–313]). The form and content of the exchanges that Molly reports are confrontational. Neither woman was willing to negotiate or compromise; each of them rejected the other’s request and by doing so threatened the status of the other. Molly felt her physician treated her “like a piece of meat” (line 322) and, in turn, her physician thought that Molly “was slapping her in the face” (line 334). Molly uses the discourse of medicine (“chemo” [line 303], “bikini incision” [line 305]) to demonstrate that she was a knowledgeable and active patient. She “was informed enough to know there are alternatives” (line 310) to the treatment her physician recommended. This knowledge gave Molly power to resist her physician’s advice. But she ties the choice about technique to the context of her life: The reason she wanted a bikini incision was that she “didn’t want to have to look at a scar like that for the rest of [her] life” (line 309). The quality of her life would be improved if she had the type of surgery she requested. From her perspective, the technique was a reasonable alternative, and it took quality of life into account. By opposing it, her physician appeared callous and unreasonable. In the request/rejection sequences and the introduction of quality-oflife concerns into an apparently technical decision, Molly’s narrative reflects and demonstrates counterdiscourses in the women’s health movement. Once women became more knowledgeable about and trusting of their bodies and informed about medicine, they began to challenge the power of the medical profession and to contest its status. Molly knew enough about medicine to understand that typically there was not only one correct technique to use during her surgery, and therefore she might as well have the type of incision she wanted. Just as her physician had, medical professionals responded to these

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feminist challenges in relationships with individual women patients. They also responded to these challenges in their professional meetings and professional publications as well as in “skirmishes between the medical establishment and feminist clinics and advocacy organizations” (Morgen 2002, 127). Molly showed me another way in which physicians did not always know what was best for patients. Whereas in the first narrative, what Molly’s physician did not know best concerned diagnosis, in the second, what she did not know best concerned treatment. A second dimension of the feminist challenge regarded the gender of physicians. Molly wanted a woman surgeon. She had had women physicians since she had started going to “one of the first women’s clinics in the city” (line 212) more than a decade earlier. Perhaps she is exaggerating when she tells me she had “always believed in women / women being surgeons” (lines 331–332), but this language is consistent with the structure of the narrative as a whole. There were no “in betweens” here. She found herself rejecting this woman doctor in favor of a man doctor because the woman had no empathy, compassion, or bedside manner, qualities typically associated with women and espoused by the women’s health movement as more likely to appear once women began to swell the ranks of the medical profession (Zimmerman 1987). However, Molly found that gender differences were not as clear-cut as she had always thought. She found it “very strange / that [she] had to go to a man / to find some compassion” (lines 328–330). Molly’s support for women surgeons seemed to rest on her commitment to justice as well as her belief that women would practice medicine differently than men. Molly believed that women have the right to become surgeons (“I’ve always believed in women / women being surgeons” [lines 331–332]). One of the fundamental problems identified by feminist health activists in the late 1960s was that men occupied the vast majority of powerful positions in health policy, health legislation, health care planning and administration, health-related research, medical education, and medical practice. In general, women had been unfairly excluded from these positions. A few courageous women were able to overcome the obstacles and enter medical school. They continued to face challenges at each stage of their careers in medicine (Cassell 2000; Morgen 2002). The feminist critique of the exclusion of women in medicine underlay the final exchange in Molly’s narrative: “‘this is like a slap in the face / I’m a woman you’re a woman / you’re supposed to be a feminist / I’m a surgeon / I came up in the fifties / when it was very hard for a woman’ / I said / ‘I understand that’” (lines 338–345). Molly and her physician agreed on this point: If Molly was a feminist, then she should to go a woman physician. Choosing a woman would be a show of solidarity. Rejecting a woman, as she did, threatened her doctor’s social status, questioning her competence as well

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as her right to be a surgeon. Molly portrays her physician as deeply hurt by Molly’s decision to have a man do her surgery (“this is like a slap in the face” [line 338]). Molly justifies her departure from her feminist principles with her description of her physician (“but I mean for a woman she had the worst attitude / I’ve ever come across in my life” [lines 346–347]). The consequences for Molly of supporting this particular woman in medicine would have been dire: This is a surgeon who had already acted more like a butcher than a physician when she treated Molly “like a piece of meat” (line 322). Unlike Esther, Molly was an educated patient by the time she had DES cancer. She had read Our Bodies, Ourselves, had become comfortable using a diaphragm, and had grown knowledgeable about her body and about DES. In addition, Molly was a feminist. In sharply oppositional narratives later in the interview, Molly describes how she fought back against the powerful institutions and individuals responsible for her cancer and for her diagnosis and treatment for her cancer. Although she was young, female, and poor, she armed herself with knowledge, trusted in her ability to know, and prevailed. Her narratives demonstrate how an individual can gain and use power and how this power can be used in the individual’s perceived interests. While Molly’s responses reproduce the discourses of feminism and the women’s health movement, they are also in opposition to them. She chose a male surgeon, and she presents her struggles in individualistic terms. The power of collective action, although potentially available to Molly through participation in the organized women’s health movement, is not the kind of power she describes. She depicts herself as a lone combatant against powerful individuals and institutions in a quest for solutions to her life-threatening problems. According to her narratives, the source of her feminist knowledge and activism was not talking or acting with other feminists but reading Our Bodies, Ourselves.20 Finding feminist knowledge and activism through reading was a common practice of U.S. feminism in the 1970s and 1980s (Davis 2007). Our Bodies, Ourselves offered “a level of intimacy that encouraged readers to respond to its text,” to participate in the women’s health movement, and to experience collective speaking of women’s experiences, even if their participation was “just” reading and writing (Kline 2005, 89). In the narratives reproduced here, Molly reconstructs a text from life, which I have in turn reconstructed and represented. These reconstructions are themselves reinterpretations, with multiple layers of meaning. On one level, Molly tells a story of DES cancer after 1971. She learned she was a DES daughter when she went for birth control, was followed for several years, and then developed cancer, for which she was treated by a DES specialist. After being diagnosed with cancer, she filed suit against the drug companies that manufactured DES.

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On another level, Molly’s narratives, as I have reconstructed them, tell a story of how experiences are shaped by the larger social structure that includes the institution of medicine and the women’s health movement. Some DES (cancer) daughters were more aware of this context (and contextual shift) than others; some became aware of it during (and resulting from) their treatment for DES cancer. Molly’s narrative provides evidence of historical activity. She was informed where Esther was innocent. Moreover, it displays how individual people making choices and decisions about their lives simultaneously make sense by drawing from dominant discourses and creatively reworking, reconfiguring, or resisting them, drawing in novel ways bits and pieces of what is at hand, creating new pathways through old narratives and new cultural scripts.

Deborah The third set of narratives comes from my interviews with Deborah, a woman who had cancer when she was in her early thirties. When I met her, she was a DES activist, participating in conferences and workshops about DES in her spare time, and she was employed full-time by a state agency. During the interviews, we sat in her kitchen, seated across from each other at her kitchen table, the tape recorder between us. Like Molly, Deborah learned she was a DES daughter when she went to a clinic for birth control and then was referred to a DES specialist. Unlike Molly, all the DES specialists Deborah went to were men. In addition, Deborah had increased medical knowledge and a different understanding of our relationship than Molly had. The differences in Deborah’s understanding of our relationship are exemplified by the interchange that occurred after we were sitting at her kitchen table and before we discussed informed consent, turned on the tape recorder, or officially started the interview. Deborah responded to the article that she had asked me to send her when we met previously. The conversation that followed lasted for roughly a half hour. Deborah asked what purpose I was hoping to serve by leaving in nonverbal utterances and pauses in the transcripts of three stories produced during the interview with “Sarah,” the DES daughter whose experiences I analyze in “Becoming a Political Woman” (Bell 1988). In Deborah’s view, these practices made Sarah look stupid and reduced her to an “insect.” Beyond the particular critique of these practices, Deborah was raising questions about power and knowledge in social science research. Deborah’s response to my article pointed out to me how the process of transforming a conversation into a published text also involves the production of authority: I gained “authority as a researcher€.€.€. by invoking [Sarah’s]

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authority and by telling her story, which ha[d] by now become my consultation, my report, my article” (Estroff 1995, 82). The particular concerns about the practice of turning talk into text and more general concerns about power and knowledge in social science research emerge during the two interviews with Deborah. For example, after I turn on the tape recorder and ask the question with which I begin all the interviews, Deborah confronts my approach to the study and thereby also challenges my status as an expert. Here is our initial exchange: Susan: um (tch) that the way I usually begin is to ask you how you found out you were a DES daughter— and what that was like for you Deborah: (pauses) significant pause (inhales) um (laughs; laughs as she speaks) you’re gonna hate me [unclear] S: no I’m not gonna hate you D: um (clears throat) actually I considered— intentionally stuttering and adding—strange words in the middle—of a sentence um (clears throat; tch) This was a simultaneously playful and serious challenge to me. It continued a discourse of power between us that began when I asked her if I could interview her, exemplified the interviewer/subject negotiations that inflected the interview, and introduced a jarring tone of levity that appears within and complicates the interview narratives reproduced here.

Deborah’s First Narrative: “Nothing to worry about anymore” 401 Deborah: the reason that I switched to the other doctor—um— 402 was this person—who—I knew at work— 403 had said that there—that—she saw this doctor in [a big city] 404 and that—he was holding a workshop or an open—session—a talk at his office 405 which was open to DES—um daughters and mothers— 406 and—that there were some people coming from [another city] 407 to talk about what exposure was about— 408 and so I went to that—um session 409 and it was DES Action 410 Susan: mhm 411 D: y’know had some—couple of people—there 412 and they showed slides

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413 and—talked about the—impact of DES exposure 414 and—pictures of—uh strangely shaped—cervixes and vaginas with adenosis and all this—(inhales) 415 and—I found it (pauses) interesting—um— 416 and again didn’t— 417 on—on certain level certainly I—I realized 418 yeah I guess— 419 that that’s me 420 although I didn’t have a real vision of it’s— 421 do I have a cockscomb cervix 422 or do I have a this kind or that kind um—(inhales) 423 but again I didn’t see that I had a—serious problem— 424 it wasn’t su’ 425 it didn’t impress me as something 426 I—I was healthy 427 and there was such a small—minority of people 428 that got cancer that—it wasn’t—something to worry about 429 but—on the other hand I did— 430 I was being told 431 I needed to do this thing 432 which was to get followed up 433 and so—this person in [a big city] was the—(inhales) supposed DES expert in the state 434 and that he was—(exhales as she speaks) the person who was best able to—to monitor 435 so I started seeing him—(inhales) .............................. 436 I do remember asking him—at one point— 437 “t’gee does this DES exposure— 438 would it have any—effect on my—being able to have children?” 439 and it was like 440 “oh no no no no no”—y’know “no problem at all— 441 nothing to worry about— 442 don’t worry about that”—um— 443 and—again ehuh I don’t know 444 it was sort of like this thing that I had to do— 445 but—I was never particularly worried about it—um— 446 and—when I was about thirty— 447 I believe—um— 448 and I must have been thirty thirty-one actually— 449 (inhales) uh—I went in for an exam

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450 and—and he said 451 “well you certainly got nothing to worry about anymore— 452 you’re over thirty y’know” 453 and it was like my reaction was sort of like 454 “well I—I wasn’t particularly worrying anyway 455 but gee that’s nice, okay—” (inhales) 456 and uh—then when I was diagnosed at thirty-three with cancer 457 it was certainly a surprise um and a shock (pauses) 458 S: was he the person that diagnosed you 459 D: yes he was— In this first narrative, Deborah describes a new regime of practices in which DES knowledge emanated from local and unstable locations. One of Deborah’s coworkers knew about it and went to a doctor who was “the— supposed DES expert in the state” (line 433). Members of DES Action traveled from one state to another to hold a workshop for patients treated by the DES expert in the state where Deborah lived. Physicians were interested in educating patients about DES and in doing so collectively rather than only in the context of individual doctor-patient interchanges. DES-exposed women were gaining attention as agents and not simply objects (subjects) of research in the world of DES research, education, and policy. They had organized the feminist self-help group DES Action and were considered experts of sorts by medical specialists. Deborah’s description of the workshop shows that the women in DES Action spoke in the language of medical experts and wove dominant discourses of medicine into their presentation. They used words signifying medical knowledge of the effects of prenatal exposure to DES (“cervixes and vaginas with adenosis” [line 414]; “cockscomb cervix” [line 421]) and incorporated medical technologies in displaying slides of vaginas with adenosis and strangely shaped cervixes typical for DES daughters.21 Their display was similar to practices used by biomedical researchers in picturing DESexposed bodies as microscopic specimens (Bell and Apfel 1995). Deborah’s discursive strategy connected DES experts in pathology, surgery, oncology, and gynecology with medical imaging and recording of the body, DES activists, and individual DES daughters and mothers in new regimes of DES practice. In Deborah’s first narrative, she explores the meaning of knowledge and ignorance—her own as well as her physician’s. She introduces the theme by describing her physician as the “supposed DES expert in the state” (line 433), her very words suggesting the opposite: that he was ignorant. Later in the narrative, she provides two examples of his ignorance, first of the connection

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between DES exposure and her ability to have children and then regarding the age-specific risk of DES cancer. Each time she uses exaggeration and repetition to undermine his false and paternalistic pronouncements (“‘oh no no no no no’—y’know ‘no problem at all / nothing to worry about / don’t worry about that’—um” [lines 440–442]; “when I was about thirty€.€.€. and I must have been thirty thirty-one actually€.€.€. and he said / ‘well you certainly got nothing to worry about anymore / you’re over thirty y’know’” [lines 446, 448, 450–452]). By contrast, she constructs herself as not only ignorant but also innocent, each time introducing her contribution to the dialogue between them with the word “gee.” Her physician’s emphatic pronouncements and her innocent expressions as well as the knowledge she and I shared about the damage DES caused to women’s fertility combine to make her description of her shock and surprise at the diagnosis of cancer at age thirty-three not only powerful but also critical of medical knowledge. In her report of the exchanges between her and her physician in this and the next narrative, Deborah looks back on her experiences from the point of view of medicine in the 1990s instead of within the framework of what was accepted at the time her physician made these pronouncements. Even within that earlier framework, however, Deborah’s physician was not practicing medicine the way DES experts were.22 The scientific “facts” about the age-specific risks of DES cancer were less certain than Deborah’s physician’s reported words were. After Deborah was thirty or thirty-one, her physician volunteered that she “certainly [had] nothing to worry about anymore” (line 451). But according to the experts, there was still some cause for worry. By the time Deborah reached her thirties, the Registry for Research on Hormonal Transplacental Carcinogenesis did not yet have information on the incidence of clear cell adenocarcinoma among DES daughters over the age of thirty (Herbst 1981, 66). However, experts warned of “the possibility of a second peak in the age incidence curve occurring in the future,” because clear cell adenocarcinoma “was predominately a disease of older women in the pre-DES era” (Herbst 1981, 66). Because this type of cancer was associated with older women, the prudent course of action was for physicians to follow DES daughters “on a regular basis in the future in order to maintain appropriate medical surveillance” (Bern and Herbst 1981, 198). In the late 1970s and early 1980s, medical knowledge about the connection between a woman’s prenatal exposure to DES and her ability to bear children was less certain than either Deborah or her physician (from their opposing viewpoints) implied it to be. By the time Deborah had begun to see this physician, studies of the effects of DES exposure on pregnancy were underway, and researchers had observed fertility problems among DES daugh-

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ters. Some DES daughters were unable to become pregnant, whereas others were able to conceive but were unable to carry their pregnancies to term. Researchers did not yet know “whether these conditions occur[red] more frequently in DES daughters than in the general population” (U.S. DHEW 1978, 36–37).23 Experts used the same reasoning in taking care of pregnant DES daughters that they did for detecting cancer in DES daughters: Even though most pregnant DES daughters are able to have healthy, full-term babies, all pregnant DES daughters should be “observed more closely than unexposed women who are pregnant” (Noller, Townsend, and Kaufman 1981, 100). Deborah reports that her physician answered her question about whether DES would have any effect on her “being able to have children” (line 438) with the words “‘oh no no no no no’—y’know ‘no problem at all / nothing to worry about / don’t worry about that’” (lines 440–442). Deborah’s narrative also constructs a relationship of power. In his false reassurances that she need not worry about having babies or developing cancer, Deborah’s physician patronized her. He left her ignorant about the risks she faced and about the reasons continued care was recommended for DES daughters. Telling her not to worry left her unprepared for the diagnosis of cancer. By leaving her in ignorance about the risks she faced as a result of her prenatal exposure to DES, Deborah’s physician impaired her ability to take care of her health or to contest his power and knowledge. DES knowledge came from unexpected and multiple locations inside and outside conventional clinics. Although Deborah’s construction of medical knowledge in this narrative is sharply critical, she does not pose feminist women’s health knowledge as the true and opposite alternative. Deborah begins the narrative by explaining that her physician had invited members of DES Action to speak to his patients. He valued their knowledge of DES. In addition, members of DES Action spoke in the voice of medicine. They not only used slides to show images of vaginas and cervixes but also (as she describes it) reduced the impact of DES exposure to events in women’s bodies. Furthermore, Deborah’s ignorance was not entirely innocent. She saw the slides shown by DES Action, but she did not see herself in these slides. Again she uses repetition—in this instance, a repetition of negatives (“didn’t have a real vision” [line 420], “didn’t see” [line 423], “didn’t impress me as something” [line 425], “wasn’t—something to worry about” [line 428])—to establish her ignorance. Her repeated use of negatives, especially of not worrying, also suggests that she resisted the knowledge that she might be one of that “small—minority of people / that got cancer” (lines 427–428). Deborah was not persuaded by the feminists, and the feminists did not use the knowledge of feeling and intuition.

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Deborah’s Second Narrative: “You have clear cell adenocarcinoma of the vagina and cervix” 501 Deborah: um—(tch) so when I came back a couple years later 502 and he—looked at me 503 and he said 504 “gee it looks like you’ve got some kind of infection here— 505 we’ll give you this cream 506 and go home 507 and” (pauses; inhales) “use it 508 and then come back in a week or two” 509 an—I came back 510 and then he did some biopsies— 511 and uh—and then I got a call— 512 that said— 513 I should come in— 514 um I had already had another appointment 515 to come back in— 516 and he—called 517 and said that he had made a—a special appointment 518 to meet up with this other doctor 519 and that—you know he had found something 520 that wasn’t great— 521 and um (pauses; tch) and I went into his office— 522 and I knew that that there was something—that— 523 obviously he had said 524 it wasn’t—it wasn’t real good 525 that he had found a problem 526 and my assumption was 527 oh gee there’s some—little thing—there 528 I’m gonna have to have maybe a—a biopsy or a cone biopsy 529 I was familiar with that 530 ’cause my mother had had—(inhales) a cone biopsy 531 and I’m thinking 532 oh god what a drag, 533 I don’t wanna have to do that— 534 and I go in—um— 535 I brought a friend—down with me 536 because—I didn’t know 537 what it was but—was gonna be said— 538 but she was out in the waiting room

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539 and I went into his office 540 he didn’t—(inhales) bring me into an exam room— 541 and he didn’t have that other doctor there— 542 who he thought— 543 who he had said was going to be there 544 and he sits behind his desk on—one side of a very large office 545 and I’m sitting on the other side—in a chair 546 and he’s sitting there with—a folder—on his—desk 547 and he says 548 “well you have—” 549 to the best of my recollection this is what he said 550 “you have clear cell adenocarcinoma of the vagina and the cervix 551 and you’re gonna have to have a hysterectomy and have your vagina removed” (inhales) 552 and uh—(tch) I—think I sat there with my mouth open—for—a few moments 553 and um—and my question—first question to him was 554 “how can I have my vagina removed? 555 it’s a hole—” 556 and—he—was puzzled 557 and—took—a moment to answer that 558 and I’m not sure 559 what he actually said, 560 he said 561 “well no it’s” uh—“you can—remove it; it’s a tube” 562 and he said 563 “so—I’m sending you over to—‘doctor so and so’ on the other side of town— 564 he’s a fine surgeon 565 he’s very gruff— 566 but—he’s a fine surgeon 567 and I [would] trust my family in his care 568 and” uh (inhales) “here’s your file”— 569 and I don’t remember him saying good-bye good luck 570 or—please you know come back and see me 571 or let me know what’s going on 572 or if you need any other referrals— 573 or anything um—(tch) 574 that was it—good-bye 575 and I sort of staggered out of there—

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When Deborah was thirty-three, her physician diagnosed her with cancer. In the second narrative, she describes how she learned she had DES cancer. Her physician had prepared her for bad news but not for news as serious as he had to communicate (“and that—you know he had found something / that wasn’t great” [lines 519–520], “and my assumption was / oh gee there’s some—little thing—there / I’m gonna have to have maybe a—a biopsy or a cone biopsy” [lines 526–528]);24 despite the possibility of having others present to witness the telling, neither another physician nor her friend was in the office when her doctor told her (“but she was out in the waiting room” [line 538]; “and he didn’t have that other doctor there / who he thought / who he had said was going to be there” [lines 541–543]); and afterward, she remembers her doctor omitting the possible courtesies he might have offered before she staggered out of his office (“and I don’t remember him saying good-bye good luck / or—please you know come back and see me / or let me know what’s going on / or if you need any other referrals / or anything um / that was it—good-bye” [lines 569–574]). Several narrative devices add meaning to Deborah’s description of hearing his news. First, she uses “gee” to introduce her physician’s observation that she had “some kind of infection here” (line 504). By this point in the interview, I had become accustomed to her use of “gee” as a marker of her innocence and ignorance. Its use here is jarring and out of place, preparing me for something that did not belong and placing her physician in the ignorant spot. Second, at the end of the narrative, she lists what the physician might have said to her but did not before she left his office to meet with the surgeon. Even though he might have wanted to be kind to her and to reassure her by telling her “and I [would] trust my family in his care” (line 567), his failure at the end of the appointment to say “good-bye” or “good luck” (line 569) made this gesture seem false and empty. His self-conscious attempt to remind her of their common humanity instead of remaining distant and affectively neutral was undermined by his subsequent breach of manners.25 Deborah’s cancer was caused by the DES her mother had been given by her mother’s physician. In his reflections on what he calls “a new species of trouble,” sociologist Kai Erikson writes that “it can be profoundly painful when the people in charge€ .€ .€ . at the time of a severe mishap deny responsibility, offer no apology, express no regrets, and crouch out of sight.” This kind of response is “the way of hostile strangers who treat one as if one belonged to a different order of humanity, even a different species altogether, and that makes it all the more cruel” (Erikson 1994, 238–239). Although her physician might have been courteous, Deborah does not remember that he was. When Deborah’s physician refused to extend even such an “elementary feature of social life” as saying good-bye,

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he also effectively refused to accept his profession’s responsibility for her cancer (Erikson 1994, 238). The crucial moment in this story is the communication of the doctor’s news to Deborah: “‘you have clear cell adenocarcinoma of the vagina and the cervix / and you’re gonna have to have a hysterectomy and have your vagina removed’” (lines 550–551). Immediately before her description of this moment, Deborah suspends the action to speak to me in the voice of the interview (“to the best of my recollection this is what he said” [line 549]). In addition, at the beginning of this part of the narrative, she switches verb tenses, from past tense to present tense (“and he sits behind his desk” [line 544]). By doing so, she tells me that this is the most crucial part of the narrative (Labov 1972). Beyond calling attention to this moment in the story, her use of the present tense and of “gee” in her doctor’s voice suggests that the news was so traumatic and unexpected that it disoriented her and perhaps it disoriented him too.26 Like Esther, Deborah was alone with her doctor when he told her the news. Unlike Esther, Deborah did not become hysterical. She was speechless at first (“and uh—[tch] I—think I sat there with my mouth open—for—a few moments” [line 552]) but soon asked him a question: “‘how can I have my vagina removed? / it’s a hole’” (lines 554–555). Her depiction of her physician is also unlike Esther’s: He is not portrayed heroically.

Deborah’s Third Narrative: “Oh no no dear no no no dear” 601 Deborah: and (pauses) anyway I just then went to this other— doctor 602 had to wait—in this waiting room for—um—gosh it must have been a couple hours ................... 603 and I finally got in to see him 604 and it’s (pauses) 605 he’s—smoking a cigar— 606 and uh—calling me dear— 607 and—(inhales) incredibly patronizing—person 608 he gives me a quick exam 609 and con’corroborates 610 that he thinks the diagnosis is correct 611 and yes—he would—be removing my vagina (inhales) um— 612 and then—he gave me the opportunity to ask him questions 613 or talk to him 614 and he’s behind his big desk [again] on the other side—

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615 at least—closer to him than to the other doctor— 616 but he’s puffing away at the—on the cigar 617 think I probably asked him to put it out— 618 and it may not have been a cigar 619 I probably exaggerated it 620 it could have been a cigarette (laughs) 621 but—anyway that’s the impression I’m left with 622 and his—uh odd but one of the first questions I asked is— 623 “gee does this cancer have anything to do with my DES exposure”—um— 624 “because the other doctor hadn’t—men’mentioned that”—um 625 and he said 626 “oh no no dear no no no dear 627 they—they used to think that 628 but that’s not true— 629 no doesn’t have anything to do with that” 630 and uh—I was sort of perplexed by that 631 and his basic approach was—don’t worry about anything you know— 632 don’t worry don’t worry 633 no dear don’t worry about that— 634 it was the y’don’t worry your pretty little head about it sort of atti’approach— 635 and uh—my—my feeling leaving—leaving there was 636 he wanted me to set up a—a—an appointment to have the surgery done— 637 and I’m saying— 638 oh god (inhales) I guess I should do that 639 and I think we did—set up a—an appointment there 640 and I’m—w’walking away with my impressions of this person— 641 um saying 642 oh god I really don’t—like this man 643 I don’t like the way he talks to me 644 but—(inhales) I guess he’s the best there is—you know 645 and that’s I have to trust that he’s the best surgeon I guess 646 I don’t have to like him (inhales) um— 647 and so I just sort of left with—being sort of stunned 648 I probably drove home (inhales) um— 649 that probably made me feel a little bit more in control 650 I don’t know—um (sighs) 651 so—from there—I then—

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652 I’m not sure at what point how soon—after this— 653 that I—started thinking of 654 gee maybe I need to—find some other resources 655 and—(inhales) some—some memory came up 656 gee there was this organization— 657 it was quite a few years earlier—was maybe—six—seven years earlier 658 that I had gone to that workshop with DES Action—(inhales) 659 I said 660 “god there’s this organization—DES Action” 661 the name was easy to recall—um— 662 and I—th’ (inhales) 663 strangely enough I hadn’t gotten any communication from them since that workshop 664 which I don’t know if that means I didn’t sign the—sign-up sheet 665 or I didn’t pay for their newsletter 666 or—what it was 667 but I had never had any communications 668 Susan: mhm 669 D: with them from them since 670 I’d never kept any materials from that workshop 671 I hadn’t really paid a lot of attention (inhales) um— 672 and uh—so I called—information 673 and they had a number for—DES Action— 674 and I talked to— 675 I’m not sure who it was that I talked to there— 676 but—they referred me immediately to DES Cancer Network 677 I spoke with (inhales) um—[two women at DCN] 678 and uh—(tch) and they—referred me to [another woman from DCN] 679 and—the immediate concern—was— 680 to find an appropriate—physician— 681 to treat (pauses) treat my cancer 682 but—(inhales) it was a whole strange new world 683 that I entered at that point By the time Deborah was diagnosed with clear cell adenocarcinoma, survivors of DES cancer had organized the DCN. In this narrative, Deborah describes her meeting with the new doctor—a male surgeon—as well as her decision to find some other resources (DES Action and the DCN) and her

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entry into “a whole strange new world” (line 682). This narrative is linked to the previous ones topically and structurally. Topically, once again, Deborah explores the theme of knowledge and ignorance. Structurally, Deborah’s second and third narratives are almost identical: The physician on one side of his desk made a pronouncement, the patient on the other side of the desk heard the pronouncement and asked an innocent/ignorant question, and then the physician answered the question. As with the interchange earlier that day, she reports this one in the present tense, although this time not as if she were an observer of it. This time she does not distance herself from the surgeon, who, while “smoking a cigar / and uh—calling me dear” (lines 605–606), told her that the diagnosis (of clear cell adenocarcinoma of the vagina and cervix) was correct and that he would be removing her vagina. As she had earlier that day and in previous interactions with her physician, Deborah innocently asked a question (“‘gee does this cancer have anything to do with my DES exposure’” [line 623]), and the surgeon emphatically said no. Whereas in the first of her narratives included here her physician emphatically denied any connection between her DES exposure and fertility, in this narrative she reports that the surgeon emphatically denied a relationship between her DES exposure and cancer (“‘oh no no dear no no no dear / they they used to think that / but that’s not true / no doesn’t have anything to do with that’” [lines 626–629]). Knowing that earlier that same day her physician had told her that the cancer she had was clear cell vaginal and cervical adenocarcinoma, and that since the early 1970s one of the undisputed facts about DES was the link between prenatal exposure to DES and clear cell adenocarcinoma, the surgeon’s denial seems not only ignorant but also incompetent and malicious. Indeed, Deborah’s mocking description of her surgeon’s attitude (“don’t worry your pretty little head about it” [line 634]) and his behavior (“behind his big desk” [line 614], “puffing away at the—on the cigar” [line 616]) makes him seem more like a stereotypical version of a bumbling comic than of a physician. To have two such disconcerting interchanges with physicians in one day, one of them with the “supposed DES expert in the state” (line 433) and the other with “the best there is” (line 644), was evidence of serious flaws in medicine, technically and interpersonally. If this was expertise, who needed medicine? Deborah “staggered out” (line 575) of the first encounter; she left the second “sort of stunned” (line 647). Even though she made an appointment with the surgeon to have the surgery, Deborah was not convinced that this was the right thing to do. She left him filled with uncertainty: She repeats the phrase “I guess” (“I guess I should do that” [line 638], “I guess he’s the best there is—you know” [line 644], “and that’s I have to trust that he’s the best surgeon I guess” [line 645]) and reports her inner dialogue (her mixed feelings about the surgeon posed

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against her physician’s reassurances of his skills). Deborah was stunned, by the message and the messenger. In the second half of this narrative, Deborah speaks to herself: “gee maybe I need to—find some other resources€.€.€. gee there was this organization€.€.€. ‘god there’s this organization—DES Action’” (lines 654, 656, 660). She called DES Action and was referred immediately to the DCN, whose first concern was to find an appropriate physician to treat her cancer. She draws this narrative to a close with a coda: “but—(inhales) it was a whole strange new world / that I entered at that point” (lines 682–683). Her coda is rich with implicit and summary meaning. She had entered the world of cancer. In an aside after her second narrative, Deborah told me that she had never known anybody personally who had cancer. Cancer was for her “an unknown, mysterious sort of thing.” Deborah had also entered the world of DES activism. She changed her strategy and, instead of ignoring DES Action as she had before cancer, asked DES activists for medical information and support. Members of the DCN helped her find a different physician to perform her surgery. The world of DES cancer that Deborah entered was a regime of practices in which DES experts in pathology, oncology, gynecology, radiology, and surgery; DES activists in DES Action; and the DCN produced networks of power and knowledge in finding solutions to DES cancer. Deborah’s world was similar to and different than the worlds of Esther and Molly. New regimes of practice gave her other choices in response to the news of cancer. In contrast to Esther (who became hysterical, just like a woman) and Molly (who became angry and confrontational, just like a feminist), Deborah was stunned but found her voice and began a search for knowledge from others who had already had DES cancer to gain information and support. Whereas Molly “had a strange feeling” about her body, Deborah entered a “whole strange new world” of cancer, where she circulated through DES regimes of practices connecting DES activists, medical specialists, and research hospitals. Deborah’s and Molly’s critiques of medicine also brought to bear different versions of feminism. Molly identified the problems as those associated with knowledge and gender. To put it simply, medicine does not include women’s experiences of their bodies in diagnosing and treating disease, but it should. Women should support each other, and women doctors should provide more compassionate care than men doctors for women patients, but they do not. Deborah drew from feminist sources of knowledge and power to undermine her physicians’ claims to expertise. Both of her physicians displayed evidence of not knowing and applying current research, even though both claimed to be experts. In addition, both treated her paternalistically. They patronized her by telling her not to worry and encouraged her to be a passive and de-

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pendent patient. Whereas Molly depicted herself as a lone heroine in combat with powerful and evil institutions, Deborah located herself in a collective network of women’s health organizations. The point of Deborah’s narratives is not that individuals can gain power but that women can work collectively to enter into permeable and unstable regimes of power and knowledge.

Discussion In this chapter, I have written a story of DES cancer, focusing on how narratives about DES cancer demonstrate a connection between historical events, dominant and emerging cultural discourses, and the production of knowledge. Yet by organizing the narratives temporally and exploring the politics of medicine through the interplay of knowledges and voices in the texts, I risk reducing my narrative to a standard story of linear progress: At first, DES cancer daughters were isolated from one another, and then they became connected to one another. Women, instead of doctors, are the heroes of this story; its structure replicates standard medical and scientific accounts of progress but replaces the main characters. Moreover, the way Molly worked out her life was more rebellious and more resistant than Esther’s, and Deborah’s was more rebellious and resistant than Molly’s. Thus, Molly’s way is better than Esther’s, and Deborah’s is better than both. The moral judgment implied by the structure of my narrative can be avoided if the women’s experiences are located in regimes of practice. At the time Esther learned of her cancer in the late 1960s, old regimes of DES practice were dominant. Esther and her physician were shocked and mystified by her disease. She was too young for the cancer he diagnosed in her. He did not understand its cause or know how to treat it; it was in neither the medical literature nor his realm of clinical experience. Nonetheless, he took decisive action, because he was the expert, and she expected him to act. In the context of such medical ignorance, such sharply defined relations of power between physician and patient, and such dire news, Esther’s response and her account of it in the form of a heroic tale can be seen not as the passive voice of defeat but of “coming to terms with the hand [she was] dealt” (Behar 1991, 308). In the late 1960s, medicine was a respected institution, doctors were trusted professionals, and gender roles were dichotomous and strongly deterministic. When Molly was told she had DES cancer, new regimes of medical and political practice were dominant. Molly’s response to the news of her diagnosis—to disagree with her physician’s recommendation for surgery, to seek a second opinion, and then to leave for another physician—was possible because of new networks of power and knowledge. These included trans-

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formed power relations between women and their doctors, a developing but still uncertain body of medical understandings of DES, a growing number of DES specialists, multiple sources of knowledge inside and outside conventional clinics about women’s health, and multiple locations for women’s health care. Differing opinions about the etiology and treatment for DES cancer existed within medicine, and feminist health activists exposed these differences to public view. When Deborah found out that she had DES cancer, feminist activists from two DES organizations had been educating physicians about DES for some time, redefining the meaning of “expert” and “expert knowledge.” DES knowledge emanated from conventional and unconventional locations, in conventional and unconventional terms. Deborah’s doctor turned to DES Action to educate his patients. DES Action used conventional medical discourse in its educational strategies. Deborah did not see herself in its story and, like the doctor, did not see anything to worry about. But when Deborah went for a second opinion after her diagnosis with cancer, she turned first to DES Action and the DCN for advice, not to a physician. Like Molly and Esther, Deborah continues to circulate through DES regimes of practice for cancer and its aftermath, including recurrences, complications of treatment, and lifelong medical screening.27 If my narrative were a simple narrative of progress, then as the science of DES moved forward, Deborah’s physicians would be more knowledgeable than Esther’s and Molly’s. However, whereas Molly’s physicians knew of and accepted the link between exposure to DES and clear cell adenocarcinoma, the surgeon recommended by Deborah’s physician denied it. He was not more knowledgeable than Molly’s physician was. In a recent construction of an “anthropology of facts” about DES, Joseph Dumit and Sylvia Sensiper also contest a simple narrative of medical progress. In a review of Medline, an online bibliographic database that provides references to journals in the biomedical sciences, they identified between one hundred fifty and three hundred articles about DES published every year since 1971 (Dumit and Sensiper 1998, 219). Additionally, they found great variability and a failure “to replicate the knowledge regarding DES that is well known and clearly stated” in a review of obstetrics and gynecology textbooks, pamphlets, popular pregnancy handbooks, and the Internet (Dumit and Sensiper 1998, 229). They conclude that facts turned out to be local and arbitrary, to “disappear or become their opposite” as they circulated through medical handbooks and popular pregnancy guides (Dumit and Sensiper 1998, 231).28 My interpretations of the interview narratives show how three DES cancer daughters’ perceptions and interpretations were mediated through the cultures surrounding them, how they lived within and in tension with sys-

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tems of domination, and how their individual biographies are connected to the structural conditions in which they originated. In their responses to the unanticipated journeys on which they found themselves, including outdated practices that could not adequately address the diagnosis and treatment of DES-related reproductive tract cancer, they created new pathways by drawing from cultural resources and putting these resources together in new ways. As a consequence, they actively contributed to the development of transformed relationships of power and knowledge in care for DES daughters. The following chapters explore new pathways and complex webs of power that continue to complicate DES regimes of practice and open up points of resistance. These include uneven and overlapping networks of activists and medical and nursing experts in epidemiological and clinical research and practice; Web-based sources of information emanating from the NCI, the Centers for Disease Control, the Registry for Research on Hormonal Transplacental Carcinogenesis, DES Action, the DCN, and the DES Follow-up Study directed to multiple audiences; congressional legislation that mandates federally funded collaborative research; and memoirs, photo essays, films, and plays producing discourses and counterdiscourses of DES cancer.

3

K Becoming a Mother after DES

D

ES daughters are more likely than women not exposed to DES to suffer infertility and pregnancy loss. In 1984, psychiatrists Roberta Apfel and Susan Fisher wrote, “Insidiously and ironically, infertility has been added to the possible effects of DES on male and female offspring: the drug given to enhance reproduction did not do so, and that same drug has now inhibited reproduction in a second generation” (Apfel and Fisher 1984, 2).1 Three years later, the editor of DES Action Voice pointed out this same “special irony”—that DES daughters are “having to make difficult decisions about the risks and benefits of fertility and pregnancy treatments” (DES Action Voice, no. 33 [1987]). The expectations and bodily experiences of DES daughters frequently do not conform to the dominant cultural expectation in the United States of a seamless progression that begins with a decision to conceive and continues smoothly to pregnancy and the birth of a healthy infant (Bell 2004). The dominant narrative connects biological performance—reproduction— to adult womanhood (G. Becker 2000, 73). A woman becomes a “real” or “complete” adult only when she has given birth to a child (Layne 2003). The dominant cultural narrative assumes that all women want to and will become mothers, that children need “constant care and attention from one caretaker, their biological mother,” and that the biological mother should take almost exclusive responsibility for taking care of children (Glenn 1994, 3). However, the narrative of seamless progression often does not match women’s lived experiences. Many women do not become pregnant when

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they want to, do not have smooth pregnancies, and do not give birth to healthy children. Infertility and pregnancy loss are “all-too-normal parts of the human reproduction experience” (Jenkins and Inhorn 2003, 1833). For example, in the United States, 15 to 20 percent of all pregnancies result in miscarriages (Layne 2003, 3, 9–10). Nevertheless, the motherhood mandate is so powerful that women who cannot conceive or cannot carry a pregnancy to term may often try relentlessly and at great cost to become pregnant and bear children. Despite feminist attempts inside and outside the academy to dislodge it, the dominant cultural narrative of mothering persists (G. Becker 2000, 40; Bell 2004).2 It fosters sustained medical treatment, which comes to be viewed as “socially responsible behavior” by American women who want to become mothers (Becker and Nachtigall 1994, 508). The turn to medicine is fostered, as well, by cultural discourses of biomedical progress (G. Becker 2000; Davis-Floyd and Dumit 1998; Throsby 2004). According to these discourses, medical science will develop new, more effective treatments for infertility, and these treatments will provide results that “nature fails to deliver€.€.€. bridge the gaps, make the connections, and assist nature in what it should have done ‘naturally’” (Franklin 1997, 209). Faith in medical solutions is “linked with notions of progress, which are embedded in U.S. values of activity, achievement, and focus on the future” (G. Becker 2000, 179). Only after sustained medical treatments for infertility do women turn to alternative ways of becoming mothers, such as through adoption, or (more rarely) choose to remain childfree. In this chapter, I consider how DES regimes of practice appear in the cultural imperative to become mothers from the early 1970s to the present. Like many other women, many DES daughters share a strong desire to get pregnant and be mothers. This desire is complicated, however, by worry about infertility and pregnancy loss related to DES. Ironically, their responses to these problems reproduce reliance on medical scientific expertise, much as their mothers’ responses did. Medical experts prescribed DES to their mothers to prevent miscarriage. In the next generation, the daughters of these same mothers turn to medical experts for help in becoming mothers. Just as their mothers’ generation did, the daughters’ generation uses new and risky reproductive technologies. For DES daughters, becoming mothers is difficult as a result of their bodies’ responses to prenatal exposure to DES and their recommended and often required re-entry to systems of medical surveillance for the successful production of children. In their relentless pursuit of motherhood, DES daughters have to negotiate the promise offered by new reproductive technologies with their embodied failures of the earlier promise of DES. In contrast to their mothers and as a result of their lived experiences, in this

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negotiation they gain the authoritative voice to produce knowledge, informing and contesting the medical view. I trace how DES daughters anticipate, attempt, and achieve motherhood by drawing from letters written by DES daughters to DES Action Voice from 1979 to 2001 in addition to narratives from my interviews with them. Overwhelmingly, the interviews and letters are infused with a component of the motherhood mandate: that becoming a mother is normal and must result from biological reproduction. I set DES daughters’ experiences in the context of rising rates of infertility and pregnancy loss over the past twenty years. To put it in terms set out in the Introduction, I explore how available cultural discourses about mothering shaped the responses of DES daughters to their experiences of becoming mothers—of pregnancy, pregnancy loss, and infertility—and whether or how counterdiscourses made other responses possible. I conclude the chapter by exploring how, collectively, the individual responses of DES daughters to becoming mothers engaged with a dominant narrative of intensive mothering, reliance on medical scientific expertise, and the use of new and risky reproductive technologies.3

Pregnancy Loss and DES In the past twenty years, pregnancy loss has increased (Layne 2003). Today, 15 to 20 percent of all pregnancies in the United States end in premature birth, miscarriage, stillbirth, or deaths in early infancy (Layne 2003, 3, 9–10). Pregnancy loss is defined as a “miscarriage” if it occurs during the first trimester (up to the fourteenth week of pregnancy) or during the second trimester (from the fifteenth to the twenty-seventh week of pregnancy). A baby born more than three weeks before its due date is defined as “premature” or “preterm” (Kaufman et al. 2000; Layne 2003).4 In the United States, the experience of disrupted reproduction is more common among DES daughters than among women not exposed to DES. A study of two cohorts of DES daughters from the DES Follow-up Study (DESAD cohort and Dieckmann cohort) reports that 28 percent of DES daughters were unable to conceive after a year of unprotected intercourse, compared with 16 percent of women not exposed to DES. Twenty-four percent of DES daughters were never pregnant, compared with 18 percent of women not exposed to DES (Palmer et al. 2001, 317–318). When DES daughters become pregnant, their pregnancies are more likely to go awry than are those of women not exposed to DES. During their first pregnancies, DES daughters are “much more likely” to have an ectopic preg-

Becoming a Mother after DESâ•… 75

nancy, miscarriage, or premature baby than women not exposed to DES, and they are less likely to give birth to a full-term infant (Kaufman et al. 2000, 487). The most recent study of pregnancy outcomes for DES daughters finds that the first time they became pregnant, 19.2 percent of the DES daughters’ pregnancies ended in miscarriage, compared with 10.3 percent of pregnancies in women not exposed to DES (Kaufman et al. 2000, 487). During their first pregnancies, 64.1 percent of DES daughters deliver a full-term baby, compared with 84.5 percent of women not exposed to DES (Kaufman et al. 2000). Looking beyond first pregnancies to complete pregnancy histories, DES daughters’ risk for ectopic pregnancies is three to five times higher than the risk for women not exposed to DES, and approximately 20 percent of DES daughters who become pregnant experience preterm labor, compared with 8 percent of unexposed women (CDC, DES Update, p. 2, citing Kaufman et al. 2000). Most fetal deaths occur during the first trimester of pregnancy, but for DES daughters they are more likely to occur later in the pregnancy (Layne 2003, 11). For these women, “the risk of miscarriage during the second trimester is slightly higher than the risk of miscarriage during the first trimester” (CDC, DES Update, “Known Health Effects for DES Daughters,” p. 3, citing Kaufman et al. 2000).5 These patterns of disrupted reproduction, along with the ideology of intensive mothering, are embedded in DES daughters’ accounts of becoming mothers and even those of women who decide not to have children. The data in this chapter include a letter to the editor in the DES Action newsletter DES Action Voice from the early 1980s that shows how perceptions and interpretations of becoming a mother after DES exposure are mediated through cultural and biomedical discourses of pregnancy and mothering prevalent at that time. The letter, by a woman I call “Stacey,” embraces the cultural ideology of intensive mothering and produces a heroic narrative of perseverance and triumph over adversity that ends happily in the birth of a healthy baby girl. The interview narratives with “Hannah” that follow step back to an earlier period to illustrate how DES became part of a discourse about pregnancy loss beginning in the early 1970s. Another interview narrative from the early 1980s shows how living with risk infuses the discourse of pregnancy for DES daughters. “Rachel” knew she was a DES daughter but had not tried to conceive. She worried that she would not be able to conceive, would have a baby born prematurely, or would have a miscarriage. In new regimes of practice, there are multiple caretakers, treatments, and sources of information as well as multiple locations from which readers interpret and respond to texts. Finally, the analysis turns to evidence of counterdiscourses to intensive mothering assumptions in an article published in 1995 in DES Action Voice

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by two DES daughters (Kari Christianson and Amanda Sherman) who chose to be childfree. In the years since DES Action started a newsletter in 1979, DES Action Voice has sought to be “the voice to and for the DES exposed and those concerned about them, and the action to make the voice heard in solving problems arising directly or indirectly from DES exposure” (DES Action Voice 1, no. 1 [1979]: 1, emphasis in the original).6 Pregnancy was an early and consistent topic in the DES Action Voice, mirroring the interests of DES Action and mapping the unfolding medical understandings of the effects of DES on pregnancy and childbearing. The first reference to fertility appears in the second volume of DES Action Voice, in “The Need for DES Sensitive Physicians,” by Judith and Matthew Schure. Their article begins with the words, “Two weeks ago, we sat down to put the finishing touches on a book we had written about our triumph over DES induced infertility” (DES Action Voice 2, no. 1 [1980]: 6). The first letter to the editor about pregnancy appears the following year, also reporting the birth of a “healthy premature girl” after five years of trying to conceive (DES Action Voice 2, no. 4 [1981]). Between 1979 and 2001, one hundred fifty letters were published in the DES Action Voice; one third of them (fifty-three) concerned pregnancy.7 Almost all fifty-three letter-writers pursued motherhood, most of them by conceiving and birthing a child (although three of the letters were from women who had chosen adoption). The dominant discourse in them was of intensive mothering. Most often, the letter would report trouble, but in the end, the letter-writer would report giving birth to one or more healthy children.8 Some DES daughters wrote letters with unhappy endings. These women were unable to conceive at all or gave birth too soon to babies who died. A third group of women were still in the process of trying to become mothers at the time they wrote letters to the editor of DES Action Voice.

Stacey’s Narrative: “I couldn’t let our daughter’s birth go by without telling you” The letter to the editor of DES Action Voice from Stacey provides an introduction to the risks and experiences of disrupted reproduction for DES daughters as well as to how the ideology of intensive motherhood infuses their experiences of infertility and pregnancy loss. In 1983, when the letter was published, readers of DES Action Voice would have been informed through letters and articles that DES daughters are more likely to have ectopic pregnancies, miscarriages, and babies born prematurely than other women, and they are more likely to have medical interventions to prevent or repair these losses.9

Becoming a Mother after DESâ•… 77

Dear DES Action National Workers: I couldn’t let our daughter’s birth go by without telling you. I am a DES daughter, victim of dysplasia, cone biopsy, miscarriage, ruptured ectopic pregnancy, second ectopic pregnancy (tube saved), incompetent cervix, cerclage and Delalutin shots, plus a difficult Caesarean section (breech birth position). Even when I almost gave up, something pushed me on. I had lots of support from my husband, family and friends. Now we are thrilled to have our daughter€.€.€. with us to make our marriage into a family. Thanks for your answers to my questions, the advertisements and articles on TV and in the printed press, and the newsletter. Keep up the good work. (“Letter to the Editor,” DES Action Voice 5, no. 1 [1983]: 8).10

Although the details of Stacey’s letter are specific to her individual experiences, the narrative produced in it is common in letters sent to DES Action Voice. Just as in this one, the dominant narrative in the letters begins with a lengthy series of harrowing events and ends with a baby. Like Stacey, the letter-writers often use a language of heroism: A woman is unwilling to give up in the face of adversity and becomes transformed from a “victim” into a heroine. The overwhelming voice assumes that becoming a mother is normal and, further, that becoming a mother results from biological and heteronormative reproduction. Stacey’s willingness to undergo these risky and uncertain medical procedures demonstrates her commitment to and acceptance of the motherhood mandate. The end of the story is a happy one, an event that refers back to its beginning: the birth of a healthy baby girl. The ending justifies her relentless pursuit of medical technology and serves as an example for other DES daughters. The moral of the story is that anyone who perseveres and pushes on medically will be rewarded with a baby. Looking back on her experiences after her daughter’s birth, Stacey lists procedures and events to convey the length and arduousness of becoming a mother after DES. The letter includes the DES Action National Workers— to whom it is addressed—as well as readers of DES Action Voice in a community of supporters, along with the writer’s “husband, family and friends.” It was printed in DES Action Voice without explanation of the different terms used, written by an insider to others familiar with the words and the experiences suggested by them. The letter tells a heroic narrative that connects the writer’s desire for a baby with her persistence and willingness to take medical, financial, and emotional risks: “if a baby is a priceless benefit, then almost anything is worth the risk” (Becker and Nachtigall 1994, 514). The letter-writer conveys active par-

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ticipation in taking these risks, despite her use of the word “victim” to refer to herself. Stacey had asked questions and read about DES, and she had relied on the knowledge of DES Action National Workers as well as on biomedicine for her actions. She did not ignorantly or unquestioningly use medical technology but rather used it “performatively€.€.€. as a vehicle for living out” her goals of biological motherhood (G. Becker 2000, 28). Her formulation of the outcome, “Now we are thrilled to have our daughter€.€.€. with us to make our marriage into a family,” equates “family” with heterosexual marriage and children, letting readers know that she has succeeded in reaching her goals and conforming to the dominant narrative of biological mothering. Several different values are being expressed in this letter, just as Gay Becker (2000) finds in her study of infertility. First is the expression of the cultural ethos of perseverance. Stacey’s pursuit of infertility treatment is a culturally sanctioned way to turn the disorder of infertility back into the order of pregnancy, childbirth, and motherhood (G. Becker 2000, 63). Second, Stacey’s “willingness to continue to take medical risks is a testament to the power of the cultural dialogues about biological parenthood€.€.€. [which] drown out competing dialogues about risk taking” (G. Becker 2000, 92). Stacey’s persistence illustrates what Becker and others have found in their studies of infertility and pregnancy loss. As they undergo treatment for infertility, women tend to forget “that it is possible to live out the cultural ideology of the family with a child who is not biologically related, and€.€.€. that the cultural ideology of the family holds greater power than the cultural ideology of the biological child” (G. Becker 2000, 196). When Stacey writes, “even when I almost gave up, something pushed me on,” she shows, in what she says and in her use of the passive voice, how women who have trouble becoming mothers “may become enmeshed, and then entrapped” in a medicalized process (G. Becker 2000, 165). The story is filled with unstated uncertainties, reflecting uncertainties about the effects of DES on daughters’ bodies and about treatment for pregnancy loss during the early 1980s. For Stacey, the path began before pregnancy with a diagnosis of dysplasia, the presence of abnormal cells on or near the cervix, which is frequently observed in DES daughters. At the time, dysplasia was “recognized as a potential risk of the development of squamous cell cancer” (U.S. DHHS 1985, 10). In Stacey’s letter, “dysplasia” is followed by the words “cone biopsy,” a medical treatment for dysplasia.11 Her mention of “dysplasia” followed by “cone biopsy” illustrates dilemmas facing DES daughters and their doctors in the 1980s and ways in which their choices were risky. To put it simply, if dysplasia is connected to cervical cancer, then the risk of treating it with cone biopsy—weakening the cervix or causing it to become narrower and less

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flexible and thus increasing the risk of infertility and pregnancy loss—may be offset by its benefits in preventing cervical cancer. In the early years following the identification of clear cell adenocarcinoma in DES daughters, there were concerns, as pathologist Stan Robboy puts it, that “as DES daughters aged, dysplasia and invasive squamous cell cancer might develop with higher frequencies; maybe even more frequently than clear cell adenocarcinoma” (Robboy et al. 1981, 580). It soon appeared that the frequency of dysplasia in DES daughters was less than initially expected, although the risk of cervical cancer for DES daughters remains unresolved even today.12 After having a miscarriage, Stacey conceived again, but this time the fertilized egg began to develop outside her uterus instead of inside (a condition called “ectopic pregnancy”).13 Typically, an ectopic pregnancy develops in a fallopian tube, the location implied by the event listed next in Stacey’s letter (“second ectopic pregnancy [tube saved]”). Stacey lost the ectopic pregnancy when the fallopian tube ruptured, a medical emergency requiring immediate surgery. She conceived again and had another ectopic pregnancy, but this time it was detected early enough to be removed so her physician could save her fallopian tube. Although Stacey does not say so, the jump in the list from “second ectopic pregnancy (tube saved)” to “incompetent cervix” signals a fourth pregnancy. To prevent loss of the fourth pregnancy, Stacey’s “incompetent cervix” was sewn shut (“cerclage”) to prevent its dilation, and she was given injections of a progesterone analog to prevent preterm uterine contractions (“Delalutin shots”).14 Ironically, “incompetent cervix” is one of the iatrogenic effects of a cone biopsy.15 When Stacey’s daughter was born, she was in the “breech position”—that is, feet- or buttock-first instead of head-first—so she was born by cesarean section, a surgical intervention during childbirth.16 “Regular users of medical jargon” understand that “incompetent cervix” is a medical term (Fox 1983, 462). By including it without comment in her letter, Stacey demonstrates her familiarity with medical jargon: An “incompetent cervix” refers to a cervix that is “unable to retain an intrauterine pregnancy until term” (Cousins 1980, 467).17 However, use of the term has been criticized inside and outside medicine because “the nonmedical use of this adjective [incompetent]€.€.€. tends to impart a negative and judgmental connotation” of women whose cervixes are “incompetent” (Fox 1983, 462).18 That is, the term blames women for the pregnancy loss (Bell 1988; Mattingly 1989). Stacey participated in a new regime of DES practices. Even in its brevity, her letter records multiple kinds of treatment, multiple caregivers and practices, and multiple sources of information. Beginning with the salutation (“Dear DES Action National Workers”), Stacey refers to a women’s health

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movement organization, which by 1983 was already collecting, interpreting, and circulating information about DES in television, print media, and its own newsletter. Stacey’s letter indicates multiple locations for knowledge about the clinical contours of DES in pregnancy. DES knowledge circulated and was accessible to women in multiple locations whether or not they were associated with the social movement organization DES Action. The new regime of practices is embedded in the letter’s list of pregnancies and medical and surgical procedures used to prevent or respond to pregnancy loss and to childbirth: developing knowledge of DES-related effects and centers of DES expertise; care for DES daughters in hospital and clinic settings for medical and surgical procedures; interventions with pharmaceuticals and medical devices; and overlapping fields of knowledge and practice in obstetrics and gynecology for infertility, high-risk pregnancy, and childbirth. By writing a letter about her experiences and decisions about becoming a mother after DES for publication in DES Action Voice, Stacey contributes to the accumulation of embodied knowledges about DES in pregnancy among DES mothers, DES daughters, and their families. Letters to the editor help make “a community of utterance by using this medium for expressing private but presumptively interpersonally shared views” (Stanley 2004, 208). Even if they were not actively involved in an organized group of feminists, readers of feminist texts, such as Our Bodies, Ourselves and Ms. Magazine (and DES Action Voice), often strongly identified with them and developed a “virtual community of health feminists” (Kline 2005, 89). In their hundreds of letters to the Boston Women’s Health Book Collective, readers of Our Bodies, Ourselves gave personal testimony, engaged critically with “medical diagnoses and treatments,” and offered their letters as part of a larger project of knowledge production to help other women (Davis 2007, 159). Letters to Our Bodies, Ourselves were responses to a text that intentionally produced embodied, situated subjects who could then use their experiences as critical epistemic resources to take control over their bodies and health (Davis 2007, 161). Stacey’s letter to the editor of DES Action Voice exemplifies a similar project. Use of the word “victim” signals a critique of medicine and commitment to a specific politics of knowledge; mention of the multiple sources of knowledge that guided her practice sends help for other DES daughters hoping to become mothers. What is the effect of a chorus of letters like Stacey’s? Together, they create momentum, or “peer pressure,” that fosters sustained medical treatment (G. Becker 2000, 108) and makes it difficult to stop treatment or to consider alternatives (either adoption or becoming childfree). For example, in other letters published in DES Action Voice, DES daughters write that they want their experiences to give hope that “many DES daughters have normal, healthy babies” (“Letter to the Editor,” DES Action Voice 3, no. 4 [1982]: 8); even though it

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might take many pregnancies, “our dreams can become reality” (“Letter to the Editor,” DES Action Voice, no. 34 [1987]: 6). In addition to fostering the medicalization of infertility, such letters as these reproduce the ideology of biological parenthood and sustain the assumptions of intensive motherhood. Indeed, Gay Becker (2000, 120) finds that “the majority of women were unable to seriously consider nonmedical options, such as adoption or childless living, until they had exhausted the medical possibilities.” The relentless pursuit of biological motherhood is echoed in the interview narratives.

Hannah’s Narrative: “It was a terrible / it was the worst time of my life” Four of the twenty DES daughters I interviewed had children at the time of the interview. Two of them had adopted children after treatment for DESrelated cancer; the third was a DES daughter who had given birth to a baby two months before I interviewed her.19 The fourth was Hannah, who had three children, the oldest in elementary school and the youngest in preschool. I interviewed Hannah in December 1982; her narratives are about the time ten years earlier when she gave birth to her first baby. When I first telephoned her late one afternoon to describe my study and to arrange an interview, Hannah was crisp and businesslike. She said that she had nine hours a week to herself and that I would have to come during that time or she would never be able to talk for an hour and a half, because her preschool-age son would disrupt us. Hannah’s immersion in intensive mothering was reflected in this initial telephone conversation and again at the start of the interview, when she turned to me after she had signed the informed consent form, but before I asked her the first question, and said, laughing, “10 after 10 okay we’re on I’ve been moving since 6:30 s’nice to sit down what’s next.” She used precise amounts of time to tell me how time-consuming mothering was for her. She had been moving for three and a half hours, so busy that she had not been able to sit down and take a break until our interview. Her laughing comment at the start of the interview reminded me of her family’s demands on her time, as did the family photographs and the three empty chairs at the table where we sat. Hannah’s laughter along with the comment was a friendly invitation to use her free time, and our time together, efficiently. It was a specific kind of “entry talk” to the interview. In the early 1970s, when Hannah became pregnant, she did not know that she was a DES daughter or that she might have trouble carrying a pregnancy to term. Hannah had always wanted to be a mother, and after marrying and being happily married, she had been on her way to becoming the mother she imagined, until her first child was born prematurely. She expected to have a

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healthy baby; when this did not happen, her understanding of the world, of how things “should” turn out, was challenged.20 Instead of knowledge of her prenatal DES exposure leading her to take precautions during pregnancy, the premature ending to the pregnancy led to her knowledge of her exposure to DES. Hannah’s perceptions and interpretations of becoming a mother after DES were mediated through cultural and biomedical discourses of pregnancy and mothering prevalent at that time. In the early 1970s, evidence was just beginning to accumulate about the link between prenatal exposure to DES and an increased risk of pregnancy loss. This uncertainty is mirrored in the ironic beginning of Hannah’s narrative: 701 Susan: uh the way I usually start is to ask 702 Hannah: mhm 703 S: how you found out you were a DES daughter 704 and what that was like 705 H: okay, uh my first child was born [in the early 1970s] 706 she was born with multiple abnormalities 707 and she was one month premature 708 she wasn’t expected to live 709 it was a terrible— 710 it was the worst time of my life (pauses) This abstract is deeply ironic. Her daughter’s birth initiated what Hannah frames as the worst time of her life. Hannah gave birth prematurely to a baby girl—whom I call Grace—who had multiple abnormalities. In this first story, Hannah indicates that becoming a mother and learning about DES were connected; becoming a mother began the worst (not the best) time of her life. Hannah did not experience a seamless progression from conception to birth or the birth of a healthy infant, in contrast to assumptions embedded in the dominant discourse of mothering. Hannah continues, in her first story, to tell me that following Grace’s birth, when Grace was still living in the hospital, Hannah and her mother, father, and husband “really went through hell.” During this hell, Hannah’s mother asked, “I wonder if it was the DES I took that is the reason for this.” “This” encapsulated Grace’s premature birth and serious physical impairments. Hannah also asked this question of her gynecologist, who was “new at the time”: 711 Hannah: anyway I said to my new gynecologist (tch) 712 I think um you know my mother took DES 713 and that’s how it all started.

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Hannah’s new gynecologist responded to her by doing a complete DES investigation. During the early 1970s, when Grace was born, medical experts had begun to note “benign epithelial changes of the vagina and cervix, as well as certain cervical and vaginal structural anomalies” in some DES daughters (U.S. DHEW 1978, 31). The effect of these anomalies on pregnancy and delivery was still unclear, because “normal pregnancy and delivery can occur in the presence of such anomalies” (U.S. DHEW 1978, 7–8). In the early 1970s, Hannah’s mother’s question (“I wonder if it was the DES I took that is the reason for this”) could not be answered with any degree of certainty. Grace lived in the hospital for two months and was subsequently hospitalized many times for multiple surgeries and invasive medical tests over the next ten years. When Grace was a toddler, Hannah unexpectedly became pregnant again but had a miscarriage in the second trimester of her pregnancy. She became pregnant again as soon as she could, and, after an easy pregnancy, she gave birth to a healthy daughter. After two more miscarriages, she gave birth to a healthy baby boy. As she puts it to me during the interview, “I’ve had 50 percent fetal loss.” Hannah’s words indicate how deeply she has absorbed the medical discourse of disrupted reproduction. Ten years later, by the time of the interview, studies of the effects of DES exposure on pregnancy in DES daughters were well underway. In 1978, researchers reported observations of “primary infertility, ectopic pregnancy, preterm delivery, and cervical incompetence” among DES daughters (U.S. DHEW 1978, 36–37). Over the next few years, virtually all studies showed that when DES daughters became pregnant, they were more likely than nonexposed women to have an “unfavorable outcome” (Barnes et al. 1980, 609). Hannah knew this at the time of the interview. Her uncertainty about the link between her exposure to DES and the premature birth of her first daughter and her miscarriages reflects a developing body of medical knowledge that was just beginning to link DES exposure and pregnancy loss. Hannah divides the narrative into two parts. My question structures the first part of the narrative (lines 714–746): “How did you—handle it during those years though?” (line 716). The “it” in my question refers to the premature birth of a very sick daughter, years of going back and forth to the hospital with this child, and several miscarriages. These terrible things did not fit with the future Hannah had imagined since she was a child. For her, becoming a mother represented a loss of innocence (Layne 2003, chap. 8).21 Hannah replies with a prototypical story opening—“well I’ll tell you what happened” (line 718)—and answers that as soon as she could, she became pregnant again (lines 720–721): 714 Susan: how did you 715 how did you get

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716 how did you—handle it during those years though? 717 Hannah: well what happened was [unclear] 718 well I’ll tell you what happened um— 719 I had my miscarriage on [New Year’s Eve]— 720 as soon as I could 721 I became pregnant again— 722 you know that’s the best way to get over having a miscarriage— (inhales) 723 a’and I had a hyst’ 724 but after right after I had that 725 I had a hysteroscopy? 726 that’s or a hysterogram’m? 727 something like that 728 to see if they could figure out why 729 I had the miscarriage 730 and it’s something tha’ I guess they do—do to DES daughters— (inhales) 731 gives you a clearer picture of your uterus (inhales) 732 they wanted to see if 733 I had a double uterus 734 or if it was you know T shaped 735 that I couldn’t carry a baby (inhales)— 736 (voice gets softer) you know cause my—my first daughter was premature 737 and now this baby—which appeared normal 738 um uh miscarried—(tch) 739 (voice regains volume) they found that 740 I did have an unusual shaped uterus 741 but it wasn’t severely malformed— 742 S: mmm 743 H: it wasn’t—T shaped— 744 S: mhm 745 H: you know that I should be able to carry—a baby to term— (inhales) 746 and—um (pauses) The first part of the narrative takes place from the time after her miscarriage until she “became pregnant again” (line 721) for the third time. Hannah uses medical language and is quite detailed in her description of what was done to and seen in her body, but she is vague about who did and saw it. She positions herself as a woman patient. Not identifying her caregivers and

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referring to them only as “they” (lines 728, 730, 732, 739) help construct an image of distanced, objective knowers and disembodied knowledges. She uses visual images: They “see” if they could figure out why (line 728) and “see” her uterus (line 732). They tried to get a “clearer picture” of her uterus (line 731). What they saw was “unusual” (line 740), but, based on what her uterus looked like, she still “should be able to carry—a baby to term” (line 745), although she had not been able to do this in either her first or her second pregnancy. Hannah’s way of telling the story blames herself for these failures. In her study of pregnancy loss, anthropologist Linda Layne (2003) finds a similar pattern of women judging themselves for reproductive “failure.” According to Layne, this moral judgment of failure and blame stems from the doctrine of individual responsibility in the United States, specifically responsibility for the well-being of a fetus, as well as from the “belief that women can and should control the outcome of their pregnancies” (Layne 2003, 19, emphasis in the original). When a fetus does not develop properly or a pregnancy ends prematurely, linear narratives about the “natural course of individual development” and of biomedicine’s “ability to assure that pregnancies and babies stay on this expected path” are challenged (Layne 2003, 68). In Hannah’s story, physicians use medical technology to look into her body and picture her uterus in order to compare her uterus with that of the anatomically normal female body (lines 740–741) and with the (ab)normal anatomy of DES daughters’ bodies (lines 733–734) that was beginning to be understood “to see if they could figure out why / I had the miscarriage” (lines 728–729). In this visual world, Hannah was seen and her body was judged by them. Hannah names two different procedures for visual diagnosis: a hysteroscopy (line 725) and a hysterogram (line 726).22 Although she does not know which of the procedures was used, she knows that it showed she should be able to carry a baby to term (line 745). “They found that” (line 739) although her uterus was unusually shaped, it was not severely malformed, so they determined the miscarriage could not be attributed to her uterus; it must have been Hannah’s fault (“you know that I should be able to carry—a baby to term” [line 745]). In this part of the story, Hannah uses “you know” to invoke shared knowledge and to appeal to relevance beyond the immediate experience (see Schiffrin 1987). In the first instance, with “you know that’s the best way to get over having a miscarriage” (line 722), she gains my involvement. The discourse marker also has referential meaning in repeating a “general truth” beyond the interview setting about how best to get over a miscarriage (Schiffrin 1987, 276–278). That is, it is a general truth that for a woman who wants to have a baby, the pain of losing a pregnancy and the failure to achieve mother-

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hood (again) with a particular pregnancy can be relieved with a subsequent pregnancy (Layne 2003). This general truth assumes that a lost pregnancy can be followed by a successful pregnancy, reiterating a belief in the seamless progression of pregnancy and the ideology of intensive mothering. The continual pursuit of pregnancy is fostered even after a succession of losses. In another instance, “you know cause my—my first daughter was premature” (line 736) reminds me of what we have already established together in the interview, which is now part of our mutual, locally situated knowledge (Mishler 1999). The narrative develops without pauses until the end of the first part of the story (line 746), where a pause functions as a signal that Hannah is not finished. 747 Hannah: in between this time 748 I also had adenosis’s 749 somewhere between Grace and the miscarriage 750 Susan: mhm 751 H: you know that was confirmed— 752 through my first DES—examination 753 that I had um—a cervix like hamburger 754 that’s what I remember 755 S: that’s wh’who’ the? 756 H: yeah 757 S: gynecologist told you that—? 758 H: he said yeah 759 it was like hamburger—raw hamburger— 760 and he had to cauterize it 761 S: what was that like to hear that—? 762 how did that make you feel? 763 H: well—you see— 764 you know I had— 765 I had spent a lot of time in [the hospital with Grace] 766 I had seen a lot of really gruesome thin’ngs—(inhales) 767 so somehow I— 768 I think it just rolled off my back— 769 it did 770 I’d really been—you know through a lot? 771 and um (pauses) 772 you know—I think 773 I’d been thro’through so much 774 with my daughter

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775 um—that it just really— 776 the things that happened to me 777 like you could probably throw darts at me 778 and it really wouldn’t bother me—(inhales) 779 you know I became— 780 probably isn’t a good way to be 781 because um—(swallows) 782 I guess I just under-reacted to everything 783 and maybe it was a defense— 784 but that was how I handled things by under-reacting 785 and just 786 S: mhm 787 H: you know (pauses) 788 you know there are so many instances 789 where you had to be calm 790 and you know speak to—physicians about different things The words “cervix like hamburger” (line 753) carry particular meaning in the world of DES. Beginning in 1941, DES was used as a growth stimulant in chickens, sheep, and cattle (Dutton 1988). The Food and Drug Administration banned the use of DES in food-producing animals in 1979, because there was no way to determine what levels of exposure to DES might be safe for agricultural workers and consumers. There were reports of its covert use in food-producing animals through the early 1980s and again in 2000.23 At the time of the interview, however, neither Hannah nor I made the connection between using DES in cattle and in pregnant women. My emotional response during the interview to the words “cervix like hamburger” (line 753) was to what I perceived as a dehumanizing analogy, evidence of the ways medicine mistreated women patients and of a play for power between doctors and patients. When I heard the description, I was surprised and deeply offended on Hannah’s behalf. Hannah uses “you know” twice as often in the second part of the narrative as in the first, appealing to our shared knowledge about DES (line 751) and the mutual understandings we have already developed during the interview about what she had been through (lines 770, 772 [Schiffrin 1987]). Here, it also seems to function interactionally, in her appeal to me to understand and accept why she became calm (lines 787, 788, 790), especially in response to my agitated question (lines 761–762). She needs to remobilize my sympathy for her instead of my outrage on her behalf. Perhaps it also refers back to the end of the first part of the story, to appeal to me to understand her persistence in trying to carry a baby to term (line 745).

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The second pause (line 771) occurs after Hannah has answered my interrupting question, signaling to me that her answer is complete, but, just as it does the first time, the pause, along with her words, holds the floor for her when she is not finished. She returns to answer the question with which she begins the story (how she handled it [lines 714–716]) and finishes her answer to it: She handled things by under-reacting (line 782). The third pause (line 787) occurs just before the coda to the story. The coda gives another explanation for why she handled things by under-reacting—it was strategic. To speak to physicians caring for her daughter and for her, she had to be calm. Hannah persevered. She learned how to “speak to” (line 790) physicians and to gain distance from the “gruesome thin’ngs” (line 766) she saw in order to protect and to advocate for her child. In contrast to the first part of the narrative, in the second part Hannah uses vivid, nonmedical language to describe her response, saying she had “seen a lot of really gruesome thin’ngs” (line 766) and then that “it just rolled off my back” (line 768), and, finally, “you could probably throw darts at me / and it really wouldn’t bother me” (lines 777–778). There is a striking contrast between the vivid metaphors she uses here and the response she is describing: to under-react and “to be calm” (line 789). Hannah produces her identity as an intensive mother in the story world by contrasting her responses to what was happening to her own body and her responses to what was happening to her daughter’s body. She became conversant and comfortable with biomedical language (e.g., “hysterogram’m” [line 726], “adenosis’s” [line 748]) and logic (e.g., a severely malformed uterus can cause premature birth or miscarriage [lines 732–745]). Becoming knowledgeable marked her as a woman engaged in the “socially responsible behavior” of using sustained medical treatment to become a mother (Becker and Nachtigall 1994, 508). In response to gruesome things she saw happening to Grace (lines 773–774) and perhaps to other children in the hospital with Grace (lines 765–766)—that is, her failure to protect her children from harm—she made herself calm (lines 788–790) and prepared for an attack so she could protect them in the future (lines 776–784). This response demonstrates commitment and self-sacrificing attention to her children and is thereby a sign of her identity as a good intensive mother. Hannah shows how cultural discourses of medicine and intensive mothering played a role in her sense-making and positioning in the 1970s. Not knowing about DES and not knowing whether DES was the reason for her pregnancy losses distinguish Hannah’s experiences in the early 1970s from those of DES daughters who anticipated or became mothers after medical knowledge of the effects of DES on pregnancy began to appear in the late 1970s.24 Hannah, unhappy with the physician who attended her during preg-

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nancy and childbirth, switched to a new gynecologist, moving from one physician to another in search of an expert who could turn this critical medical problem into a biologically sound technical solution. The switch, Hannah’s depiction of medical expertise using anonymous and distanced language, and her construction of relationships in which they exercised power in seeing and doing procedures to her body locate her experiences in old DES regimes of practice. Soon after Grace’s birth, when she was still hospitalized, Hannah’s mother participated in the mobile and transitory field of DES medicine when she asked whether the DES she took might be “the reason for this.” Hannah took this question to her new gynecologist; in the old regime of practices, Hannah or her mother could ask the question, and the gynecologist had the authority to investigate it. He took the question seriously and responded by doing a complete DES examination, putting into practice the developing biomedical knowledges about the effects of DES on the bodies of DES daughters and their pregnancies. New regimes of practice are visible as well, such as in the identification in the laboratory of DES effects (adenosis) by discourses of pathology and responses to them in the clinic (cauterization) by gynecology. Hannah’s reference to her medical care using the words “DES—examination” (line 752) connects the 1971 publication in the New England Journal of Medicine (Herbst, Ulfelder, and Poskanzer 1971) reporting an association between prenatal exposure to DES and vaginal cancer to procedures for visualizing the vagina, cervix, and uterus in pregnancies gone awry. When she says, “my first DES— examination” (line 752), Hannah also invokes systems of medical surveillance into which she was inserted; it was the first of many examinations she underwent in becoming a mother after DES. In these new regimes of practice, knowledge and decisions emanated from local and unstable positions. Hannah’s story of becoming a mother after DES begins with the premature birth of her daughter and the start of the worst time of her life. Hannah draws upon images and conventions of mothering to present and to interpret her experiences. She worked hard, remained calm, and continually entered the world of medicine to give birth or to mother her sick daughter. She was aware of her difficulty in meeting the standards of intensive mothering, but by engaging in sustained medical treatment to become a mother, going to the hospital, monitoring the medical care of her daughter, and sacrificing her own needs in favor of her daughter and other children, she could establish herself as a good mother. Hannah’s narrative is shaped in important ways by becoming pregnant in the early 1970s and by not knowing about DES before the premature birth of her first child; its conformity to the discourse of intensive mothering in spite of all the losses connects it to the dominant narrative of becoming a biological

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mother after DES. This is exacerbated when DES daughters are aware of the risks and have been involved in the world of medicine before they attempt to become mothers.

Rachel’s Narrative: “Basically the whole / for me the biggest issue is having children” Worry about having children assumes the goal of biological motherhood. The motherhood mandate is so strong that the expression of worry in anticipation of the attempt to become a mother was pervasive in my interviews with DES daughters. Whereas in the early 1970s, Hannah learned she was a DES daughter after the premature birth of her daughter, ten years later in the early 1980s, Rachel already knew of her exposure to DES before trying to conceive, understood that her prenatal exposure to DES put her at risk of having trouble conceiving and carrying a pregnancy, and worried in anticipation of becoming pregnant. When I arrived one evening in the winter of 1982 to interview Rachel, I was greeted by hot air and the smell of cauliflower as she opened the door. Rachel was in her late twenties, had completed graduate school, and was employed full-time in social services when I interviewed her. She took me into the living room of the apartment she shared with two other women, where we sat on a well-worn couch during the interview. The room was fairly bare, furnished with simple shelves. After she had finished answering my opening question, a few minutes into the interview, Rachel asked me whether I was interested in any particular area. When I replied that I was interested in “whatever you think is important to you,” she told me the “biggest issue” was having children: 801 Rachel: uhhuh um—basically the whole 802 for me the biggest issue is having children 803 ’cause that’s s’c’extremely important 804 Susan: mhm 805 R: a concern of mine 806 I really want to have children 807 and I’m uh frightened about the idea 808 of being able 809 not to conceive— 810 uh of be’ 811 having a premature 812 you know delivery 813 those I guess

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814 are the biggest risks 815 the inability to conceive 816 and a’a premature 817 or—or a miscarriage 818 S: mmm 819 R: it’s just not being able to carry a child 820 and uh I guess 821 which has something to do 822 with the shape of your uterus 823 the DES daughters have what 824 I guess is called a T-shaped uterus 825 instead of a normal one 826 and I was—wondering what kind I had 827 but Dr.——said— 828 “look it’s not worth the risk to have an x-ray 829 ’cause x-rays are one [risk] themselves 830 and when the time comes they’ll deal with it” 831 so I mean 832 I still don’t know what kind of uterus I have 833 S: mhm 834 R: you know so it brings up feelings of 835 feeling defective in some way 836 uh which is a real blow to me 837 who’s always been very physically healthy 838 y’know I think exceptionally so Rachel had not yet attempted to become a mother at the time of the interview, and she was “frightened” about the risks ahead of her. She speaks in a pattern of repetitions, false starts (“basically the whole,” “uh of be’,” “a’a premature,” “or—or a miscarriage” [lines 801, 810, 816, 817]), and awkward phrasing (“being able / not to conceive” [lines 808–809]) that help convey the depth of her feelings about the issue and of its importance to her. Perhaps the awkward phrasing of “being able not to conceive” (instead of “not being able to conceive”) also signals some discomfort with the medical language she slips into here (“having a premature€.€.€. delivery€.€.€. the inability to conceive€.€.€. premature€.€.€. miscarriage” [lines 811–817]). Her use of “you know” (line 812) at this point in the interview, inserted between “premature” and “delivery,” is a way of making sure (and checking to see whether) we shared knowledge about the risks of becoming mothers after prenatal exposure to DES. At this point early in the interview, Rachel has already referred several times to her concerns about having children and to her certainty that her first pregnancy

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would be considered a high-risk pregnancy. This is the first time she names her specific concerns and risks as a consequence of her prenatal exposure to DES: “inability to conceive,” “premature,” and “miscarriage” (lines 815, 816, 817). “You know” also enlists my involvement in the performance and induces me to act as an information recipient and Rachel as an information provider. Rachel involves me further in the next part of the story with her use of reported speech. She uses the expression “I guess” three different times in these two excerpts of talk, each time reporting medical facts about DES to me: “those I guess / are the biggest risks” (lines 813–814), “and uh I guess / which has something to do / with the shape of your uterus” (lines 820–822), “the DES daughters have what / I guess is called a T-shaped uterus” (lines 823–824). This might have several functions: to convey uncertainty about medical knowledge about DES, to convey Rachel’s uncertainty about whether these facts about DES daughters applied to her (she did not know what kind of uterus she had), or to try out facts about DES on me to see whether she was right (in other words, seeing me as an expert and asking me without asking me about these facts—in effect, fact-checking with me).25 Prenatal exposure to DES can cause a T-shaped uterus and as a result the likelihood of not being able to carry a child. For Rachel, this brought “up feelings of / feeling defective in some way” (lines 834–835), and this was “a real blow” (line 836) to her. “Defective” could refer to her potentially “defective” uterus or to her “defective” self. To put it simply, if her uterus did not work, and she could not have children, she could not be a real adult woman. This inability would be a “real blow” or assault to her sense of self, because she had always thought of herself as “very physically healthy” (Layne 2003, 6, 59). A “very physically healthy” woman should be able to have children easily, progressing from conceiving to carrying a pregnancy and giving birth. Rachel’s use of adjectives (“real” “very” “exceptionally”) emphasizes the extent to which being a DES daughter and wondering whether she had an abnormal T-shaped uterus was a blow to her sense of who she was and her imagined story of what becoming a mother would entail. These are common feelings among women who have experienced pregnancy loss, but Rachel tells them in a narrative about worrying and being frightened in anticipation of becoming pregnant (Layne 2003; G. Becker 2000). In Rachel’s experience, the irony of potentially not being able to carry a child was compounded by not knowing whether she had a T-shaped uterus and at the same time by knowing that the diagnostic x-ray that could confirm whether or not she had a T-shaped uterus was itself a risk. Despite the fact that she might be one of the DES daughters who had a T-shaped uterus, her physician told her to wait and that they’d “deal with it” (line 830) some time in the future when the time came. Her use of reported speech performs the

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encounter to me. His telling her “they’d” deal with it distanced her physician from Rachel and suggested that someone else—not “I,” but “they”—would be taking responsibility for her when she tried to become a mother. In her case, knowing she is a DES daughter had not helped to relieve her anxiety about becoming a mother, because she did not know what the effects of DES on her reproductive body were. Hopefully, they’d “deal with it” before she had a miscarriage or premature birth, and not after she lost a pregnancy. Unlike Hannah, who lost her innocence about becoming a mother after becoming pregnant, Rachel lost her innocence about becoming a mother even before becoming pregnant. The biggest issue for her was having children, wondering whether she would be able to conceive and to give birth to a full-term baby. Already immersed in the DES regimes of practice, Rachel was poised to use sustained medical treatment to become a mother if her initial attempts to become a biological mother failed. At the same time, her knowledge about some of the most common DES effects on the reproductive organs of DES daughters (T-shaped uterus) and on pregnancy (miscarriage, premature birth) equipped her with an authoritative voice for negotiation when she re-entered systems of medical surveillance.

Counterdiscourses: When Is Enough Enough? Among DES daughters, becoming a mother is the dominant discourse, as demonstrated in the interviews and letter to the editor examined in this chapter. DES Action Board member Andrea Goldstein (1989, 4) contests the relentless pursuit of biological motherhood when she poses the question “When is enough enough?” in a “Personal View” published in DES Action Voice.26 Margaretta Jolly and Liz Stanley write that “‘the letter’ as a genre type immediately dissolves into messy or hybridic forms once actual examples come under analytic scrutiny” (2005, 78). My analysis of “letters” is “messy” in that it also includes “personal views.” Between 1979 and 2001, thirtyone “Personal Views” were published in DES Action Voice. These personal narratives describe experiences related to DES. Twenty-two of them concern pregnancy (and pregnancy-related topics of premature births of children and infertility), with such titles as “From DES Daughter to Preemie Parent” (vol. 4, no. 2 [1982]), “Host Uterus—My View” (no. 33 [1987]), “Our Personal Triumphs” (no. 41 [1989]), and “One Connecticut Daughter’s Story” (no. 52 [1992]). As are the letters and interviews, the “Personal Views” are infused with the motherhood mandate and create momentum for sustained medical treatment in the quest of biological motherhood. In addition to letters and “Personal Views,” 524 articles about DES-related topics were published in DES Action Voice between 1979 and 2001. The articles

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include reports about DES legislation, litigation, and conferences; a questionand-answer column in which different medical experts answer questions posed by DES Action Voice readers; reviews of medical journal articles about DES; and articles by European chapters of DES Action (especially from the Netherlands and Canada). Of the articles, 110 of 524 were about pregnancy (infertility, premature birth of baby, third generation); 4 of 524 were about adoption or childlessness. In her “Personal View,” Goldstein cautions that too many DES daughters get “hooked” on infertility. In her view, “the DES-exposed couple is caught up in an even more complicated web. Victims of a so-called ‘medical miracle,’ we may struggle even more as we consider not only ‘traditional’ therapies [for infertility], but the new technologies as well” (Goldstein 1989,1). Attempts like Goldstein’s to contest sustained medical treatment or to develop discourses against the ideology of intensive motherhood appear sporadically in DES Action Voice, more often in articles than in “Personal Views” or letters. For example, in her review of a book about one couple’s “triumph over infertility,” Kim Klein writes that her one “complaint” was the authors’ assumption “that having children is the most worthwhile course of action that life holds” (1983–1984, 2). In her view, “many people choose not to have children€.€.€. because that is the best course for them, and it is not a ‘second-best’ decision” (Klein 1983–1984, 6). Six years later, in an article titled “Choosing Non-Parenthood,” Ellen ’t Hoen writes that despite the pressure to become parents and thereby a family, “a large group of women choose, for various reasons, not to have children, and are perfectly happy about it” (1989, 4). Resisting “the message that a childless life is incomplete,” she ends the article with a call for “freedom” and writes that the “decision to have a life without children of your own should be respected and regarded as one of the many decisions people make in their lives” (’t Hoen 1989, 4). These contributions to embodied knowledges about living without children among DES daughters participated in a recuperation of what Gayle Letherby and Catherine Williams call a “lost discourse” of nonmotherhood in popular, academic, and scientific publications (1999, 722). Until 1995, these sporadic counterdiscourses, particularly of choosing to remain childfree, did not prompt a response in DES Action Voice. Letters to the editor and “Personal Views” continued to produce the dominant discourse of becoming a mother and of the relentless medical pursuit of this goal. In 1995, two board members of DES Action wrote “Childless or Childfree: Decisionmaking for a Lifetime.” According to a biographical entry at the end of the article, authors Kari Christianson and Amanda Sherman had “faced the painful obstacles associated with the decision not to have children and both remain ‘childfree’” (1995, 7). In their article, Christianson and Sherman ask, “With so much attention focused on the options for those strug-

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gling with infertility, why has the choice not [sic] to have children remained in the shadows for so long?” (1995, 7). Linking stories of pregnancy loss for DES daughters to the stories of their mothers, Christianson and Sherman name “cultural mandates which insist on parenthood” and identify political, economic, and social forces making it difficult for women to “sort out how much of their desire for children comes from societal expectations and how much of their desire, or lack of it, comes from within” (1995, 8). Their article concludes with examples of how “a childfree lifestyle may open options for including children in a manner other than child-rearing within a household” and a list of “benefits conferred by the freedom that can accompany the decision to remain childfree” (Christianson and Sherman 1995, 8). With capital letters, Christianson and Sherman attempt to write a different story for DES daughters, of not having children. This time, the counternarrative elicited a response. Letters to the editor from two women who had chosen childfree lives were published in the next issue of DES Action Voice: Thank you! For the great great article on a childfree life. I cannot begin to tell you how much I appreciated hearing these words and how much I needed to hear them. More! You spoke directly to me and I really appreciated your not glorifying or demonizing anyone’s choices. This was one of the best examples of support for this lifestyle I’ve ever seen. An articulate mature piece of communication—thank you many many times from the bottom of this DES child??? daughter’s heart. Member for many years (“Letter to the Editor,” DES Action Voice, no. 64 [1995]: 6)

I was extremely pleased to finally read an article about couples who do not choose the emotional roller coaster ride of infertility treatments. My husband and I made a rational decision after we had consulted with an infertility specialist. We then chose to be childfree. Reader, Florida (“Letter to the Editor,” DES Action Voice, no. 64 [1995]: 6)

The use of capital letters (“finally”), repetitions (“great great,” “many many”), exclamation points (“More!”), and repeated question marks (“???”) distinguishes the form of these letters from others published in the DES Action Voice, just as the narrative of not choosing motherhood does. The form and content of the letters imply that each woman had waited for years to see a childfree story, one that is difficult to write against the dominant story of becoming a mother (see G. Becker 2000, 206). Both letter-writers identify

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themselves as having read DES Action Voice for many years. One signs the letter “Member for many years,” and the other begins her letter with the words “I was extremely pleased to finally read an article about couples.” The enthusiasm of their responses is an indication of just how strong the dominant discourse is and how hard it is to resist. Support and agreement among DES daughters, as it is expressed in these letters, is a critical factor in creating and sustaining counterdiscourses (G. Becker 2000, 215). The choice to not have children, which contests the mothering path altogether, has surfaced infrequently over the years in DES Action Voice. These texts—while few and far between—contest the dominant narrative and tell a story of alternatives to biological motherhood. The small number of articles, “Personal Views,” and letters to the editor, as well as their grammatical structure, attests to how pervasive and persistent the dominant discourse is. It also underscores the importance of public forums, such as DES Action Voice, as vehicles for creating and sustaining counterdiscourses. Becoming a biological mother after DES reproduces the dominant narrative of intensive mothering and reliance on medical expertise for becoming a mother, which I have explored in interviews and letters to the editor in DES Action Voice. Beginning in the 1970s, when they began to try to become mothers, and in the course of working out individual solutions to their unfolding DES-related problems, DES daughters made choices that contributed to the reproduction of the dominant discourse. Relentlessly pursuing motherhood—as Stacey and Hannah did—also fostered the expansion of networks of power and knowledge in reproductive medicine and regimes of DES practice. DES daughters entered into systems of medical surveillance from different locations (before becoming pregnant, after suffering a pregnancy loss; before DES was connected with infertility and pregnancy loss, after the connection was made). They also entered regimes of DES practice at different points in the system: being diagnosed with “dysplasia” (Stacey), giving birth to a baby with multiple abnormalities (Hannah), wanting an x-ray to see whether her body looked normal (Rachel). The individual responses of DES daughters to becoming biological mothers engaged with a dominant narrative of intensive mothering, reliance on medical scientific expertise, and the use of new and risky reproductive technologies. DES daughters also made choices that helped to produce counterdiscourses, one of which I have explored in DES Action Voice, about not becoming a mother at all. This counterdiscourse also challenges the reliance on medical expertise for becoming mothers, as suggested by the question “when is enough enough?” (Goldstein 1989). In new regimes of DES practice, DES Action Voice was an important source of information and critical debate for DES daughters about embodied experiences of DES, including becoming or not becoming mothers.

4

K Remapping DES Bodies

S

oon after the 1971 publication by Arthur Herbst, Howard Ulfelder, and David Poskanzer that causally connected clear cell adenocarcinoma of the vagina and cervix in young girls with prenatal exposure to DES, researchers looked for other effects in and on DES daughters’ bodies even as they rushed to treat DES cancer daughters and to understand the risks and consequences of this cancer. Although the practices of gynecologic oncology and high-risk pregnancy focused on different “problem areas,” these networks of expertise intersected and overlapped in the anatomies and physiologies of DES daughters. Within the next decade, researchers working in different specialties in various hospitals and research settings identified a range of anomalies in DES daughters’ vaginas, cervixes, uteri, and fallopian tubes. Currently, the Centers for Disease Control DES Update reports that—in addition to clear cell vaginal adenocarcinoma—vaginal adenosis and a T-shaped uterus are the reproductive tract abnormalities that are “most highly associated with in utero DES exposure.”1 Early publications (1976–1982) from DESAD, the federally funded national study, report “gross anatomical changes in the cervix” (cervical cockscomb, transverse cervical and vaginal ridges, hypoplastic cervix collar)2 and abnormally shaped uteri (“T-shaped uterus” or “DES-uterus,” hypoplastic uterus, irregular uterine margins [Giusti, Iwamato, and Hatch 1995]).3 Changes in microscopic tissues were also identified, including vaginal adenosis,4 dysplasia, and squamous metaplasia.5 But even once these effects could be attributed to

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DES exposure, uncertainty about how to manage them remained. At first, such interventions as cryosurgery6 and electrocautery were performed to “correct” the differences. And yet knowledge soon began to circulate in specialist publications not only that these interventions were unnecessary but also that the interventions themselves created “a high rate of cervical stenosis and cervical incompetence in DES daughters” (Laitman 2002, 391, citing Stillman 1982 and Schmidt and Fowler 1980). By 1982, pathologists concluded that “although clear cell adenocarcinoma typically arises in areas of adenosis, progression from adenosis to cancer is not usually observed” (Giusti, Iwamoto, and Hatch 1995, 783, citing Robboy et al. 1982). Others found that cervical malformations, including adenosis, appeared to resolve over time. Previous chapters focus on DES daughters’ narratives about the diagnosis of DES cancer (Chapter 2) and becoming or not becoming mothers after DES (Chapter 3). But women’s narratives about their embodied experiences of DES reveal a more complicated story than can be told in these chapters. Ironically, old regimes of practice from the 1940s to the 1970s (when DES was prescribed to prevent miscarriage) produced DES daughters who “often need to be thought of as€.€.€. daughters of the drug, as having an additional, pharmaceutical parent” (Dumit and Sensiper 1998, 216). To put it simply, DES daughters can be thought of as having three parents: a mother, a father, and the DES that crossed the placenta and affected the developing fetus in myriad ways, from “profound cascading effects on many hormone systems” to the production of new anatomical structures (Dumit and Sensiper 1998, 216). These characteristics—crossing the placenta, disrupting the developing fetus, and affecting the bodies of DES daughters in multiple ways that often do not appear for many years—are those that identify this pharmaceutical “parent” as the first chemical known to act as an “endocrine disruptor” (Krimsky 2000). DES daughters are “cyborg babies” and cyborg women (Dumit and Sensiper 1998, 216). Their bodies are hybrids, mixtures of “machines”—that is, a pharmaceutical—and organisms, with fractured bodies and identities (Haraway [1985] 1991). Their hybridity is simultaneously pre- and postnatal, and it varies depending on the particularities of their bodies and lives. For example, before birth, the way DES affects a developing fetus is related to when its use begins, the duration of its use, and the dosage. After birth, becoming mothers after DES fuses daughters with high-tech medicine differently than developing clear cell adenocarcinoma does. DES daughters circulate through different networks of power and knowledge, depending not only on the “diagnosis” but also on their ages and the locations and times of their diagnoses. The known effects and the known and unknown potential future effects

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of DES on daughters’ bodies require lifelong circulation through systems of medical surveillance. This circulation includes varying degrees of surgical, pharmaceutical, and medical intervention and transformation of DES daughters’ bodies. Beginning in the late 1960s, in their responses to the structural and functional consequences of their DES-infused bodies, DES daughters and their caregivers have creatively used existing materials to put together new bodies, knowledges, and regimes of practice. In this chapter, I look at the details of three DES daughters’ narratives about the surfaces and depths of their bodies, tracing old and new regimes of DES practice through their body talk. The first narrative tells a story of a woman’s moral quandary about vaginal reconstruction in response to her surgeon’s plan to “do a vaginal implant” after her surgery for cancer in the late 1960s. By the mid-1970s, the local and global contexts in which DES daughters’ pelvic examinations took place had changed in important ways, and thus the second woman’s interview narrative illustrates mobile and transitory points of power and knowledge in DES science in a description of a pelvic examination several years after surgery for cancer and vaginal reconstruction. The third interview narrative, with a DES daughter who had not had cancer, tells of office-based treatment in the late 1970s to remove tissue from her cervix. This narrative, about the consequences of the procedure, shows how DES knowledge and power emanate from local and unstable sites.

Cassie’s Narrative: “But in this border time / they can make your life miserable” First, I turn to a narrative about DES cancer that engages discourses of sexuality, procreation, and religion. In Cassie’s narratives, an old regime of DES practice overlaps with stigmatized silences about young women’s vaginas. Cassie was a college student when she was diagnosed with vaginal cancer in the late 1960s, and she did not find out she was a DES daughter until after her surgery. Surgeons removed her uterus, vagina, and part of her intestine and replaced it with a colostomy. For the colostomy, surgeons made an artificial opening (a stoma) in her abdomen, attached part of her colon to the opening, and made it possible for stool to pass through the opening into a collection bag (a pouch) that Cassie wore on her torso. Several years later, her surgeon implanted a new vagina in her body. The borders of Cassie’s body were changed, on and below its surface. Among other things, her new vagina opened a passage into her body but did not connect with a uterus. The colostomy rerouted the passage of stool; its pouch rested on her abdomen and became part of the surface of her body.

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The late 1960s, when Cassie had her surgery for the vaginal clear cell adenocarcinoma, was also “a border time” in women’s health care and gynecologic oncology. The practice of removing and reconstructing vaginas was almost unprecedented for young women and their doctors. In this border time, DES daughters had to find ways to talk about and to come to terms with changes in their bodies, including their vaginas, when even talking about vaginas was stigmatized. The metaphor of a “border time” in Cassie’s narrative provides a very rich entry to making sense of DES daughters’ embodied experiences. It was pouring rain and snow when I drove to interview Cassie one winter afternoon in the early 1980s. Travel was slow, and when I arrived at the apartment complex, I had trouble finding her building. By the time I rang Cassie’s doorbell, I was late and flustered. Cassie’s apartment was warm and comfortable; the living room where we sat for the interview was furnished with a couch, a rocking chair, and an easy chair with an ottoman at its foot. Cushions, photographs, and knickknacks surrounded us. Everything in her apartment exuded comfort. At the time of her surgeries, Cassie had a steady boyfriend. Cassie was a faithful Catholic, and this presented problems for her; for her boyfriend, Arthur; and for her relationship with him and with her priest. Cassie’s priest told her it was a border time, when Catholicism was changing its values about sexuality and procreation. The narrative that follows highlights the sovereign power of religious discourse that permeated Cassie’s embodied experiences of DES cancer, muting the discourse of medical sovereignty that elsewhere she takes up in detail. 901 Cassie: Arthur never wanted any part of that— 902 you see he never could face it and tell me 903 Susan: mhm of— 904 when you say 905 he never wanted any part of that 906 what do you mean? 907 C: he didn’t want any part of the—hysterectomy 908 he also— 909 see when we had this 910 when this happened— 911 [my doctor] told me 912 he’d do the vaginal implant— 913 well at that time 914 it wasn’t allowed by the Catholic Church 915 and Arthur had bad feelings towards that 916 because the chaplain at the hospital was— 917 said to me

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918 “when you come in” 919 he said 920 “I want you to have it” 921 he said 922 “the views of the Church now for sex 923 are for procreation 924 you can’t have a baby 925 you know that 926 so there’s no reason to build that in” 927 and I said to him 928 “fine” (laughs) 929 “but now in reality 930 that’s not what a husband gets married for” 931 and he said 932 “no 933 and the Church’s view will change 934 you go right along having that operation done 935 just don’t tell me when it’s gonna be done 936 I’ll know you’re here 937 but don’t tell me what it’s for 938 don’t tell anybody what it’s for” 939 he said 940 “when you talk to the priest in [your hometown] 941 you fine you’re in for surgery 942 they’ve got to do some work 943 don’t” 944 he said 945 “don’t force the issue 946 because down the road they’re gonna change their mind 947 and then it’s gonna be fine 948 but in this border time 949 they can make your life miserable” Cassie’s use of the metaphor “a border time” captures multiple meanings of her surgery. In her narrative, the straightforward medical solution offered by her physician—to “do the vaginal implant” (line 912)—depends on its ability to fit into Cassie’s understanding of being a faithful Catholic, and thus the primary discourse in this narrative is religious. One way to understand her surgery is by beginning with a religious discourse about “sex for procreation” versus “sex for pleasure.” It was a border time in Catholicism, when the Church hierarchy, clergy, and Church members were engaged in a

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“fundamental discussion” about the use of artificial birth control, abortion, and, more generally, the meaning of sexuality (Cahill 1989, 128). There was a “growing gap between what the Catholic Church officially” taught and the actions and beliefs of Catholics (Kosnik et al. 1977, 78). Until mid-century, Catholics considered sexual intercourse for procreation to be more important than sexual intercourse as an expression of mutual love and sharing of lives. In the 1960s, this assumption was beginning to be contested, and the official Church position was moving “toward greater appreciation of the interpersonal relational context as grounding the moral significance of any particular act” (Cahill 1989, 150). Cassie and the hospital chaplain acknowledge the tension between the interpersonal and procreative dimensions of sex in marriage. The chaplain tells Cassie that “you can’t have a baby / you know that / so there’s no reason to build [an artificial vagina]” (lines 924–926), equating sex with procreative sex; and Cassie responds, “that’s not what a husband gets married for” (line 930), equating sex with sexuality and pleasure. The hospital chaplain and the parish priest practiced what we would now call a “don’t ask, don’t tell” policy regarding the sexual lives of married couples. The chaplain tells Cassie that “the views of the Church now for sex / are for procreation” (lines 922–923) but that “the Church’s view will change” (line 933), and he warns her not to “force the issue” (line 945) when she talks with her parish priest. In warning her not to tell him or her parish priest about the surgery that would render her infertile body capable of sexual intercourse, the chaplain teaches her how to have the implant and maintain her status as a good, faithful Catholic.7 The “don’t ask, don’t tell” warning also seems to be a kind of border patrol based on verbal performance. Being “licit” is a matter of not saying the words that would mark a person—in this case Cassie—on the wrong side of the border in relation to Church doctrine. Language, too, has a liminal location between people and society. Language is partly internal to people’s thoughts and partly external in being used socially, and it is also partly material in that speech is a physical activity (and words are physical sound waves) and partly immaterial in the meanings and interpretations people get from the physical words. From this perspective, the chaplain is saying to Cassie, “Don’t make the immaterial material, don’t make your private knowledge of what’s really going on in the surgery into public fact.”8 A second way of understanding the meaning of Cassie’s surgery begins with her “marriageability”—that is, Cassie’s loss of her vagina and her impotence—although this does not seem to be the direction taken by Cassie. The 1917 Code of Canon Law held that sterility, “incapacity for generation,” was not an “impediment” to marriage, because consummation depended on copula perfecta, sexual intercourse with sperm deposited into the vagina

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(Bouscaren and Ellis 1957, Canon 1068). However, the Canon determined that impotence, defined as “incapacity for the marital act” either of a man or a woman, was an impediment to marriage. According to Canon Law, “where either the uterus or the ovaries, or both, are missing, provided the vagina is intact, impotence is at least very seriously doubtful, hence practically nonexistent as an impediment” (Bouscaren and Ellis 1957, Canon 1068). After her surgery for cancer, Cassie’s body was on the border between a capacity and an incapacity for marriage. According to Canon Law, without a vagina, Cassie was impotent, but if she had surgery for a vaginal implant, she would no longer be impotent (even though having had a hysterectomy meant she could not have sex for procreation). Reconstructive surgery could be considered a means of removing the impediment of impotence and thereby enabling her to marry.9 But, as Cassie told me, in his response to Cassie’s situation, her chaplain drew from one discourse—the controversy over artificial contraception—instead of from the discourse about the moral status of impotence in counseling such a young unmarried woman in such unfamiliar medical circumstances (lines 922–938). Another way of understanding the meaning of Cassie’s surgeries is via her relationship with her boyfriend that was also in a border time. Cassie and Arthur were not yet committed to marriage, and her boyfriend “had bad feelings” (line 915) toward the vaginal implant. Like Cassie, her boyfriend had been raised in a Catholic family and had attended Catholic schools. Cassie reports what her doctor told her and then follows this with direct speech between the chaplain and her (“he said,” “and I said”; lines 919, 921, 927, 931).10 This performance feature displays how the religious discourse infused her individual life experience and, by leaving Arthur out of the exchange, enhances a central point in the story: Arthur was not moved by the chaplain’s reasoning or the Church’s changing views. He did not change his mind or his bad feelings toward the implant during or after this border time. Cassie uses repetition to emphasize the strength of his feelings, as in this exchange between us earlier in the interview: 1001 Cassie: ’cause he hated it 1002 he hated it 1003 he made it known 1004 he hated it— 1005 Susan: hated? 1006 C: hated the surgery ..................... 1007 hated the implant 1008 hated anything to do

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1009 with anything with my surgery 1010 the way I was Here, the word “hated” is repeated many times, and the structure of the clauses is also repeated, from “he hated it” before my question to “hated the” after my question. These repetitions emphasize the strength of Arthur’s feelings as well as his oppositional, uncompromising, and unmovable position. Cassie’s narrative about her body reveals how, in the late 1960s, Catholic priests and laities, surgeons and patients, and girlfriends and boyfriends drew from existing cultural resources, reconfigured them, and created new pathways of sexuality, faith, and medicine. Cassie’s narrative is about finding ways to repair her body so that she could have a normal marriage and at the same time continue to be a faithful Catholic. Cassie’s surgeon found a way for her damaged body to be repaired. He was not able to restore all her body’s functions, but he did fix some of them. After her surgery for cancer, Cassie’s body could not reproduce, but after her vaginal reconstruction, she could have sexual intercourse. Cassie’s chaplain also found a way for her repaired body not to interfere with her faith. He was not willing to listen to a “confession” about her vaginal reconstruction, but he was willing to counsel her to have it and be silent about it. Cassie remained a faithful Catholic, in the sense that she had not confessed and that she could consummate marriage. She was able to stay on the “right” side of the border even as she engaged in risky practices. Discourses of normative heterosexuality, religion, and medicine influence Cassie’s way of talking about her body and her relationships as well as her desires and the actions she took on her own behalf to live (as much as possible) a normal life. She wanted to be able to please her husband and to please her Church. She turned to medical and religious authorities to tell her what to do, and she listened to them. In the creation of a solution to normalize Cassie’s body and life at this time and place, a local network drew from existing knowledge about surgery and normative heterosexuality. Paradoxically, this solution moved toward new pathways of power and knowledge: “Discourse can be both an instrument and an effect of power, but also a hindrance, a stumbling-block, a point of resistance and a starting point for an opposing strategy. Discourse transmits and produces power; it reinforces it, but also undermines and exposes it, renders it fragile and makes it possible to thwart it” (Foucault 1978, 101).

Esther’s Narrative: “I was one of the wonders of medical science” The second narrative engages discourses of power, knowledge, and desire—a new regime of DES practices—in its description of a pelvic examination in a teach-

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ing and research hospital after surgery for cancer and vaginal reconstruction. Its views of the body, power, and knowledge differ from those in the previous narrative about “a border time.” The narrator is Esther, whose narrative about hearing the news of her DES cancer begins Chapter 2. This narrative’s views also differ from those of Esther at the time of her surgery, in which her response to the news of her cancer was to become “hysterical” and to rely on her heroic physician. The events in the following narrative took place several years after Esther’s surgery for cancer and the construction of a new vagina. By this time, not only had Esther become an educated patient but the local contexts in which the events of this narrative take place had also changed in significant ways: The causal relationship between DES and cancer had become “known” and circulated through myriad medical specialties, hospital centers for DES care, conference presentations, and publications; and women’s health activists had begun to organize collectively. These transformations are reflected in the markedly different discourse strategies Esther employs at the beginning and end of her interview with me. Esther began this narrative at the very end of the interview, after we had been talking for almost two hours. The interview had continued longer than I had anticipated, so the second side of the first tape had run out and I had to put a new tape into the recorder. Before the tape had run out, Esther had been telling me how her responses to physicians had changed in the fifteen years since her surgery for DES cancer. She was older, she was more knowledgeable, she was not the same sort of patient as she had been earlier, and she did not have the same kind of passive and submissive relationships with her physicians. She insisted on being an active participant in her medical care. The tape ended with Esther describing her recent experience with a diagnostic procedure. Four physicians-in-training, she said, were “fighting literally fighting about how they were going to put me in the thing”: 2001 Esther: and I finally let out this huge scream 2002 “I’m a person in here” 2003 and they all just kinda stopped 2004 “calm down Esther 2005 you’ll be all right Esther 2006 everything will be all right” 2007 but that’s just 2008 you know Ironically, at this point the tape stopped, too. After I changed the tape and turned the recorder back on, I did not pick up on Esther’s “you know” (line 2008). Instead, Esther looked back to her surgery fifteen years earlier, when she had been the center of attention, and said:

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2009 Esther: okay 2010 it was just like 2011 I remember 2012 when I— 2013 after having the surgery— 2014 they reconstructed my uh vagina— 2015 they took—tissue from I think the small intestine or something— 2016 so it was like a new procedure 2017 and this whole big deal— 2018 so doctors were coming in from 2019 I can’t tell you 2020 [Europe] I remember one came 2021 Susan: hmm 2022 E: and I mean 2023 I was one of the wonders of medical science 2024 so they would want to see— 2025 now i’ you can imagine where they had to see 2026 I mean I had 2027 it was nothing abnormal 2028 to have five six guys standing around 2029 while [my doctor] showed (laughs) them what—what he did 2030 which— 2031 (tch) I—I mean I didn’t feel that bad about it 2032 because I knew 2033 he tho’ he just thought it was the most wonderful thing in the world and 2034 S: who did? 2035 E: [my doctor] 2036 S: mhm 2037 E: and I used to tease him about it a lot you know 2038 “oh yeah 2039 I know what to do now” (exhales) 2040 and— 2041 but it you know it was kind of a little 2042 it would have been nicer if it was my hand obviously (laughs) Esther’s narrative is rich with multilayered meanings about remapping. One remapping is the transformation of Esther’s corporeal body, in which her intestine became a reconstructed vagina. Second is a remapping of her position as gynecology patient, in which she teased her gynecologist and started

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to direct the exam. Third is an oscillation between different symbolic meanings of her vagina as Esther negotiated between the poles of sacred-profane and pure-dangerous (see Kapsalis 1997, 20). In the narrative, Esther’s body is flexible and fluid, and she travels from spectacle (when she is a woman whose body is seen) to spectator (when she directs the drama of the pelvic exam) of a body with shifting meanings. Esther’s narrative begins with a discourse marker (“okay” [line 2009]) and several false starts (“it was just like,” “I remember / when I” [lines 2010, 2011–2012]), perhaps reflecting the interview setting, in which the tape had just been changed, and the intimate topic of her narrative. The narrated event takes place in a teaching and research hospital in the habitual past (“so doctors were coming in from,” “it was nothing abnormal / to have five six guys standing around” [lines 2018, 2027–2028]), showing that it is an example of a recurrent kind of pelvic examination. Esther constructs a story world with moral standards in which it is normal for five or six guys (“doctors”) to stand around looking at a woman’s vagina as another shows them details about it (“my doctor showed€.€.€. them what—what he did” [line 2029]), although at the same time it is uncomfortable and awkward, which Esther indicates with her laughter (Chambliss 1996). Esther’s pelvic examination was continuously negotiated by the participants, who were “simultaneously agents actively making choices and subjects directed by institutional and other cultural forces” as they engaged in a practice that depended upon the public exposure of “shameful female privates” (Kapsalis 1997, 5). The first part of the narrative reproduces a familiar medical discourse of discovery, visualization, and colonization, or—as Michel Foucault (1980) would put it—of power and knowledge, that has been remarked repeatedly in feminist critiques of gynecology. Esther’s references to anonymous physicians (“they”) in the first narrative clauses (“they reconstructed,” “they took” [lines 2014–2015]) set me up for hearing about sovereign power in which medical experts did research and training on patients’ bodies. The first part of the story summarizes the goals and successes of this old regime: “I was one of the wonders of medical science” (line 2023). Esther’s new, man-made vagina becomes a metaphorical space in which physicians treating DES cancer found fame and fortune. Not only did Esther’s physician make her a new vagina but he also performed a new procedure by doing so; it was a “whole big deal” (line 2017). Male physicians come from far and wide to peer into Esther’s body (using an unnamed speculum to open up her vagina)11 so that they can see into her reconstructed vagina, celebrating the wonders of medical science. Yet Esther’s narrative resists a simple story of colonization. Esther turned to me and said, “you can imagine where they had to see” (line 2025), her words

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enlisting me in the production of the narrative and making her experience my experience (Langellier and Peterson 2004). Her appeal asks me to imagine what it would be like to be in her place and to feel and to see myself being seen by them. Esther stops short of putting her body on display by foregoing “the full disclosure of a confessional” (Langellier 2001b, 174). She does not tell me where they looked or what they saw. She deflects “a voyeuristic gaze” by asking me to “imagine” (Langellier 2001b, 175). The discourse marker (“I mean” [line 2026]) and the false start (“I had” [line 2026]) introduce the next part of the narrative with the same structure with which the first part began, but Esther follows it with the words, “it was nothing abnormal / to have five six guys standing around” (lines 2027–2028). This recurrent public performance of female privates did not reproduce sovereign power. It engaged in a play of power and knowledge (“I didn’t feel that bad about it,” “and I used to tease him about it a lot” [lines 2031, 2037]). The repeated displays of Esther’s body had educated her as well as doctors. Now she, too, had become a bearer of knowledge about the clinical contours of DES. Putting me in her place also engages me in the play of power and turns us both into spectators watching the performance from the interview world of the telling. Even though Esther’s laugh (line 2029) expresses discomfort at being in her place at the time of the exam, it draws me into a game of making fun of the whole spectacle, including her doctor’s pride in her vagina. Esther enlists me in a performance of her refusal to be passive and objectified while undergoing a pelvic exam. The words “wonders” and “wonderful” introduce religious imagery to describe the performance, specifically the “thing” (line 2033) Esther’s doctor had produced. It—Esther’s vagina that he had reconstructed from her small intestine “or something” (line 2015)—was wonderful, sacred even. He was proud of it, and his pride was shared by the doctors who came to see what he had done. Yet at the same time, Esther’s formulation of the pelvic exam represents the precarious border between the sacred vagina and the profane vagina (see Kapsalis 1997). From one organ in her body, her physician reconstructed another organ in her body. He had taken tissue from her intestine and put it into her vagina, turning a passage for eliminating waste into a passage for sex and pleasure, a portal for excretion into a portal for reception.12 Adding to the precariousness of the border was the inclusion of an audience of five or six guys and the hint of their (and her?) sexual pleasure (Kapsalis 1997). Even though five or six guys were crowding around while her physician showed them her body, she used to “tease” her physician (line 2037) and say “‘oh yeah / I know what to do now’” (lines 2038–2039). Talking back and acting like one of the guys avoids the resemblance to “gang rape,” a resemblance risked by the pedagogy of pelvic examinations more generally (Kapsalis 1997, 64).

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Esther unwittingly employs cyborg imagery when she depicts the pelvic examination as a practice that celebrated and engaged her and depicts herself as a wonder of medical science (Davis-Floyd and Dumit 1998). Esther is a hybrid, a mixture of organism and machine, a product of techno-science (Haraway [1985] 1991). Esther’s identity is fused with her cyborg body; her body with its reconstructed vagina is herself: “I was one of the wonders of medical science” (line 2023). The cyborg is not only hybrid but also trickster, and Esther’s playfulness toward her doctor undermined and subverted the physicians’ wonder and self-importance by poking fun at them. Esther marks her intervention, calling attention to it by its location in the narrative (it is the resolution of the actions) and its performative features (it is the only reported speech, and it is her speech): “‘oh yeah / I know what to do now’” (lines 2038–2039). Although Esther is referring here to her reconstructed vagina, transformed by techno-science that fused intestinal and vaginal tissue, in another sense the phrase “I was one of the wonders of medical science” refers obliquely to the use of DES in pregnancy. At the time it was prescribed to pregnant women, DES was considered a “wonder drug,” a term picked up by DES Action in the 1970s and used ironically in the phrase printed on posters, buttons, and pamphlets: “DES, the wonder drug you should wonder about.” Esther’s old vagina-diagnosed-with-adenocarcinoma had resulted from a fusion of the synthetic estrogen diethylstilbestrol with hormones in her mother’s pregnant body (Dumit and Sensiper 1998). “I was one of the wonders of medical science” is simultaneously ironic and literal, collapsing past and present, human and man-made, mother and daughter, the context of the told with the context of the telling. The coda (lines 2041–2042) connects back to the start of the narrative (lines 2009–2017) with its similar structure of false starts (“and / but it you know it was kind of a little” [lines 2040–2041]) and its naming of a body part (“my hand” [2042]). It acknowledges the limits of Esther’s comfort with and ability to exercise power in this public performance. They—Esther and her physician—had turned an abnormal situation into a normal one and a monstrous body into a wondrous one. But there were limits to what they could accomplish: “it was kind of a little” what? A little what? Uncomfortable? Embarrassing? Esther leaves that to my imagination, just as she does earlier in the narrative when she asks me to imagine where they had to see. One way of interpreting the coda is that showing a hand to five or six guys is not the same as showing a reconstructed vagina to them. Showing a hand would have been “nicer” because “where they had to see” would have remained on the surface and not the interior of her body. It also would have been nicer because they would not have had to penetrate a sexual organ or

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to risk the resemblance to gang rape. A hand is less sexually charged than a vagina, looking at a hand is less stigmatizing than looking at a vagina, and showing a hand is less shameful than showing a vagina. Alternatively, Esther could be comparing the loss of her vagina to the loss of her hand: “obviously,” if she had to choose, she would have chosen to lose a hand and not a vagina. Another way of interpreting the coda is that Esther had limited options to exercise power in relation to medical science. She could tell the doctor she now “know[s] what to do” while he’s down there with the other docs, but knowing is not the same as doing. His hand—not hers—inserted the speculum into her vagina. In addition, she could either display her hand or her reconstructed vagina, but she could not refuse to participate in the exam or to let them see her body. Esther had come to terms with the “hand” she had been dealt or, more accurately, the “reconstructed vagina” and the “public performance of privates” (Kapsalis 1997, 5), but neither the vaginal reconstruction nor the recurrent practices were things she would have chosen had she been in a position to choose. Esther’s narrative, “I was one of the wonders of medical science,” demonstrates how, in times of uncertainty, biomedicine used the knowledge it had at hand to put together new practices and how DES daughters participated in this process. The joking and playful way in which Esther recalls her pelvic exam suggests how it was typical and not typical for a teaching hospital. It was not abnormal to have five or six guys standing around watching the pelvic exam. She knew she was helping them understand how to care for their DES patients and learn a new procedure for reconstructing vaginas. She was not an anesthetized patient (although she had been), she was not a sick patient (although she had been), and she was not overwhelmed by modesty. She was playful and joking with the guys about standing around looking into her vagina. Esther’s narrative suggests ways that new regimes of DES practice dislocated borders within and between bodies as well as previously taken-for-granted ways of establishing authority and producing knowledge about “privates.”

Ruth’s First Narrative: “See I could see it on a TV screen / which was great you know” Ruth was in her late twenties, had completed graduate training, and was employed in social services at the time I interviewed her during two hot summer evenings in the early 1980s. She lived with a roommate in a three-story apartment building, which looked old but well-kept. After I arrived at the front door of the building, I pushed the bell for her apartment, was buzzed inside, and walked up to the second floor, where Ruth greeted me. She then ushered

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me into a long hall, taking me first into her kitchen where she introduced me to her roommate—another woman—and then on into her living room, which had posters announcing art exhibitions on the walls and books about psychology on the bookshelves. She settled on a couch. I sat across from her in an easy chair and put my tape recorder between us. Ruth had short, curly hair and was dressed casually, wearing a flowered t-shirt and pants. The hot summer weather brought with it open windows, and sounds from outside wafted through the room where we sat during the interview—airplanes droning overhead, a drum, telephones ringing—all of them recorded on the tape. In the late 1970s, Ruth had learned she had been exposed to DES during a routine exam when a gynecologist noticed “something” and asked her whether she was a DES daughter.13 Since then, she had had a series of office-based “procedures”—which she referred to as cryocautery—to treat the “abnormal cells” on her cervix. As a consequence of these procedures, scar tissue had formed, and, over time, the scar tissue was “closing down” the opening in her cervix (“os”), causing very painful periods and the possibility of damage to her fallopian tubes. New regimes of DES practice are characterized by mobility and instability, illustrated by the administration of these office-based procedures to Ruth. When Ruth had had her cryosurgery, DES experts warned against this procedure, because treating the abnormal cells was probably unnecessary. The cells were probably normal for DES daughters. For DES daughters, cryosurgery was likely to result in “stenosis, or blockage, of the cervical canal” (Orenberg 1981, 79). In fact, her mother’s obstetrician had sent this warning to Ruth’s physician at the time. DES daughters, along with their physicians, are products of the uneven circulation of “writing technologies and information flows” (Dumit and Sensiper 1998, 217). This knowledge and experience had a powerful impact on how Ruth negotiated later decisions about medical care for her body. At the time I interviewed her, Ruth told me she was planning to have laser therapy to remove the scar tissue and dilation to open up her cervical os. Ruth had had “a multitude of second opinions” before making her decision to have laser therapy to correct the damage from the earlier procedures. I wanted to know why Ruth had decided to have laser therapy. In her answer to my question, Ruth replied with a narrative: 3001 Susan: (tch) why was it that they recommended this? 3002 were you having trouble? 3003 is it because of the cramps or just that [unclear]? 3004 Ruth: and also because of the increased— 3005 see I could see it on a TV screen 3006 which was great you know

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3007 I still have the scar tissue one year 3008 and he said 3009 I think it was last year 3010 he said 3011 “well we could do laser but—you don’t really have to—” 3012 and this year 3013 he takes a Q-tip 3014 which on the TV screen looks like a golf club 3015 S: mm 3016 R: and tries to put it into or around the os 3017 to get some kind of smear 3018 and he’s like 3019 I mean this is the way he is 3020 it’s like no conception of the patient whatsoever 3021 and he says 3022 “I can’t get this in”— 3023 then he asked the nurse for something 3024 that’s a like a quarter of the diameter of the Q-tip 3025 to put 3026 to get the smear 3027 S: mhm 3028 R: and he’s like 3029 “I can’t get this in either” you know 3030 like “Jesus what the hell’s going on here” 3031 but I could see the scar tissue closing down 3032 S: mhm 3033 R: the os 3034 and if I hadn’t seen it myself 3035 I would have said 3036 well I would have had a lot more questions about doing it 3037 S: mhm 3038 R: but there was a substantial amount more scar tissue 3039 S: mm 3040 R: and um—and it’s interesting 3041 because I forgot who 3042 but somebody told me 3043 that it takes like four years for it to develop 3044 and it was exactly four years 3045 from ’76 to to ’80 ’80 was when we first saw the scar tissue 3046 S: hmm 3047 R: so at least everything’s working according to clockwork

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3048 but—you know I feel like it’s the right thing to do 3049 I really I really do 3050 S: mm 3051 R: I mean it wasn’t an easy decision to make at all 3052 but ultimately I feel like it’s the right thing Ruth’s narrative describes her experience of a pelvic examination that included use of a colposcope. For DES daughters, colposcopes are used during pelvic examinations if abnormalities are seen or felt or are identified with a Pap smear (cytology).14 A colposcope is a low-powered microscope with a light source that “looks something like elaborate binoculars on a swinging arm attached to the wall or to a floor stand” (Orenberg 1981, 77). Looking through the “binoculars” during a pelvic examination gives the viewer a magnified look at a woman’s cervix and vagina. Photographs can be taken if a camera is attached to the colposcope, and then the photographs can be displayed on a video screen or saved for a permanent visual record. The colposcope, camera, and TV screen are apparatuses of techno-science, producing a specific type of embodiment (see Haraway 1999, 61). Ruth told me it was great to see herself on the TV screen, because she could see evidence herself of the need for laser. The words Ruth uses are not those of feeling a Q-tip put into or on her os but of seeing visual images during the colposcopy and the way the images made her feel (“I feel like it’s the right thing to do / I really I really do,” “but ultimately I feel like it’s the right thing” [lines 3048–3049, 3052]). The way Ruth tells the story puts me in her position of watching the examination. Ruth begins with a discourse marker (“see” [line 3005]). She dramatizes the action using direct speech (“he said / ‘well we could do laser but—you don’t really have to’” [lines 3010–3011]), switching from the past into the present (“and this year / he takes a Q-tip” [lines 3012–3013]) and showing how powerful the colposcope was rather than describing its magnification (“which on the TV screen looks like a golf club” [line 3014]). I respond to the strong image here (“mm” [line 3015]) and signal my attention and involvement. She and I are spectators of the television screen, onto which is translated images of her body, the Q-tip, and her physician’s manipulations. Ruth turns from the story world to the interview world in which she is telling the story to say, “I mean this is the way he is / it’s like no conception of the patient whatsoever” (lines 3019–3020), and then she returns to the story world in which she interweaves direct and indirect speech with past and present tense to build the drama: “and he says / ‘I can’t get this in’ / then he asked the nurse for something€.€.€. and he’s like / ‘I can’t get this in either’ you know / like ‘Jesus what the hell’s going on here’” (lines 3021–3023, 3028–3030).

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The physician spoke to the nurse but not to Ruth. He ignored the woman in the body, and she removed herself from her messy, occluded body and actions on it by her physician, who had “no conception of the patient whatsoever” (line 3020). Ruth uses repetition to underscore the importance of seeing (“see I could see it on a TV screen,” “I could see the scar tissue closing down” [lines 3005, 3031]). If she “hadn’t seen it [herself]” (line 3034), she “would have had a lot more questions about doing” the laser (line 3036), but having seen for herself that “there was a substantial amount more scar tissue” (line 3038), she did know what the hell was going on. Once again, Ruth turns from the story world with an aside to me supporting her interpretation of what was going on. She begins, “and um—and it’s interesting” (line 3040). Her repetitions and use of specific years and dates give further credence to the conclusion she drew from what “somebody” told her: “that it takes like four years for it to develop / and it was exactly four years / from ’76 to to ’80 ’80 was when we first saw the scar tissue€.€.€. so at least everything’s working according to clockwork” (lines 3042–3047). Her use of the pronoun “we” aligns her with her physician, and her use of the words “the os” instead of “my os” distances herself from the cells imaged on the TV screen. The implication is that both of them had seen the scar tissue on the TV screen previously as well as now, and both of them saw a substantial amount more of it close down the os. For Ruth, what she saw was intelligible, and it indicated that her body was working predictably, despite her physician’s exclamations to the contrary. Ruth plays with power by telling a story in which the doctor did not know what was going on. The Q-tip becomes a golf club; the doctor becomes a golfer; and his words become indications of his surprise and confusion: “‘Jesus what the hell’s going on here’” (line 3030). The patient, on the other hand, sees the evidence (scar tissue closing down), connects it to what she has heard from “somebody” (line 3042), and knows what was going on. Her body was working just like it should. The convincing evidence was on the screen, not in her “original body” (Stacey 1997, 158), and the authority was “someone,” not her physician. Thus, Ruth feels that the right decision was laser therapy, not because the doctor said so, but because she saw it. Ruth attributes her decision to being able to see what was happening, not inside her flesh and blood body but in its translation into a magnified image on a TV screen while she had a colposcopy exam (Stacey 1997, 157). The high technology of visualization— in this case a colposcope, camera, and television screen—turned the inside of her body outside, registered the details of cell growth onto a visual surface, and gradually turned the “previously significant substance of [her] body€.€.€. into a flat surface of codes and images” (Stacey 1997, 158). Ironically, for Ruth, the copy spoke “more urgently and with more authority than the opaque and

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occluded ‘original body’” (Stacey 1997, 158). Ruth’s narrative is filled with reversals and substitutions (see Haraway 1999): of her body imaged on a TV screen, of a physician wondering “what the hell’s going on” and a patient knowing what is going on, of seeing leading to feeling, and of feeling becoming the basis for making a decision to have laser.

Ruth’s Second Narrative: “I’m just thinking like gross scar tissue / that doesn’t belong there” Ruth continued to talk about her body, her self, her relationship with her physician, and her decision to have laser therapy. Later on, the interview was interrupted by a phone call. When we resumed the interview and I had turned the tape recorder back on, Ruth returned to her decision to have laser surgery and began another narrative. 4001 Ruth: um—I’m not thinking cancer right now 4002 I’m just thinking like gross scar tissue 4003 that doesn’t belong there 4004 oh and also you know 4005 that around that week 4006 that I was feeling like a mutant 4007 I was also feeling like 4008 maybe the worst part 4009 even beyond that 4010 as the damage has already been done 4011 like maybe— 4012 maybe I’m uh 4013 I have 4014 there’s another fear I just remembered 4015 maybe I’m uh maybe I’m already sterile you know 4016 like maybe everything’s already fucked up already 4017 and it’s too late 4018 because the scar tissue has closed down the cervix ........................................... 4019 so I mean when [my doctor] said to me 4020 “you know I would rather in essence have you with a bigger cervix 4021 and put in a cervical ring when you try and conceive 4022 than to have you sterile 4023 and have your tubes fucked up” 4024 I thought of [my friend] and I said

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4025 “oh my god you’re right” you know absolutely absolutely 4026 so that ab’ 4027 that 100 percent contributed to my decision 4028 just seeing what’s she’s going through—(pauses; tch) 4029 you know and i’ ultimately 4030 one—one of my big desires 4031 is to have kids 4032 and I just 4033 I have the feeling that I’m going to be able to 4034 but I think it’s gonna be not easy—you know 4035 it’s not gonna be normal ’cause I’m not— Ruth begins the narrative by describing her abnormal body (“I’m just thinking like gross scar tissue / that doesn’t belong there” [lines 4002– 4003]). Because of this, she describes herself as a mutant (“that around that week / that I was feeling like a mutant” [lines 4005–4006]). In the first part of the story, Ruth moves between the telling and the told when she says, “there’s another fear I just remembered” (line 4014), drawing me into the story world. The fear that she was already sterile is worse than the thought of gross scar tissue. With false starts (“like maybe,” “maybe I’m uh,” “I have” [lines 4011–4013]) and repetitions (she repeats the word “maybe” six times in different forms: “Maybe I’m,” “like maybe” [lines 4008, 4011–4012, 4015–4016]), she performs her fear for me, showing me that this is a fear she has felt repeatedly. Maybe the scar tissue has already closed down her cervix. Here, Ruth interrupts the core narrative with an episode (not reproduced here) about a friend who had had trouble conceiving because of scar tissue. Ruth starts the second part of her narrative with the discourse marker “so” (line 4019). Ruth listened to her physician, because his logic made sense to her (“‘oh my god you’re right’ you know absolutely absolutely” [line 4025]). His explanation also fit with her experience (“I thought of [my friend] and€.€.€. that 100 percent contributed to my decision / just seeing what’s she’s going through” [lines 4024, 4027–4028]). The choices put to Ruth were indications of a mobile and uneven field of DES knowledge and practice and of the medical science of reproduction in the 1980s. The discourse she gives to her doctor includes a colloquial term (“fucked up” [line 4023]), and hers includes a statistical term (“100 percent” [line 4027]). This performance feature shows how two ways of knowing were both influential to Ruth’s decision. “Fucked up” fallopian tubes would make it difficult, if not impossible, for Ruth to conceive. The laser would open up Ruth’s os to prevent damage to her fallo-

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pian tubes. At the same time, opening up her cervix could make it difficult for Ruth’s body to carry a pregnancy to term. But, looking ahead to that time, Ruth’s doctor reasoned that an intervention to prevent miscarriage would be preferable to an intervention to promote conception. The decision to have laser therapy was Ruth’s, and it ends the action to the story, indicated by a long pause. She then adds a coda to the narrative in which she conveys her belief that she would be able “to have kids” (line 4031) even though it probably would not be easy. The coda ends with the words, “it’s not gonna be normal ’cause I’m not” (line 4035). The doctor could intervene to fix one problem, but the effectiveness of the fix for making it possible for her body to conceive and its potentially negative consequences for carrying a pregnancy would not become apparent until Ruth tried to have kids.15 Ruth was not simply a passive patient accepting the expert advice of her physician. Ruth’s decision to have the laser followed from her physician’s argument and her knowledge of her friend’s experience. Her own lived experience of an earlier physician whose treatment had damaged her body fostered her resistance to just going along with her physician’s recommendation for laser (see Bell 1988 on these points).16 Ruth decided to have laser therapy and dilation for multiple reasons. There is no one answer and no right answer to the question of whether to have the treatment. There are only different answers, using different evidence and different ways of knowing. Ruth exercised power using different discursive strategies. She drew from multiple sources in making the decision— “somebody” (line 3042), her friend’s experience, seeing images, hearing from her physician. In the end, she and her physician would know whether she made the right decision only after she tried to become pregnant, and even then the outcome of her attempt would not be connected unambiguously to her decision about laser.

Discussion Together, these narratives demonstrate how DES daughters helped create new space and new conversations about bodies as they and their physicians drew from old and new regimes of practice to understand and address the effects of DES in and on their bodies. In the late 1960s, Cassie turned to medical and religious authorities to tell her what to do after her surgery for cancer. Ten years later, Ruth drew from multiple resources to decide what to do about scar tissue closing down the os in her cervix. Cassie listened to the “sovereigns” and followed their orders, but Ruth’s wholehearted (“100 percent”) acquiescence was tempered by her feeling that the experts’ abilities

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to fix her body so that she could bear children were limited. The interpretive lenses of Cassie and Ruth reflect their locations in time and place. The choices presented to and made by Cassie were made possible during the early years of medical care for DES cancer (when the DES-cancer connection was not known) and at a time of change in the Catholic Church, which limited how her body and life could be normalized. At the same time, her boyfriend hovered in the background. In her narrative, he represents gendered expectations for adult womanhood. To put it in Foucauldian terms, Cassie worked within a world of institutionalized power and knowledge in which “the ascent of power€.€.€. is tied to scientific knowledge” (Foucault 1980, 107) that she did not have resources to resist. At the same time, these discourses were becoming increasingly vulnerable to “criticism of things, institutions, practices, discourses” (Foucault 1980, 80), signaled by the border metaphor she uses. The maps of medicine and religion no longer accurately represented the terrain through which DES daughters’ bodies traveled. Cassie tells how the medical and religious authorities drew from what they did know to produce intelligent navigation for her. The choice presented to and made by Ruth was to repair damage in her body without knowing the outcome of it but knowing that current medical strategies for DES daughters might prove to be harmful in the long run. Ironically, treatment to preserve her fertility might put her fertility at greater risk, knowledge made possible by DES experts in the late 1970s and made accessible by women’s health movement activists. Ruth’s turn to experience represented resistance to modern forms of institutionalized power and knowledge. Her turn exemplifies a form of what Foucault terms “subjugated knowledges€ .€ .€ . a whole set of knowledges that have been disqualified as inadequate to their task or insufficiently elaborated€ .€ .€ . low down on the hierarchy” (Foucault 1980, 82). Against her doctor’s scientific knowledge (“a body of functionalist and systematizing theory” of medicalized reproduction [Foucault 1980, 82]), she posed her high school friend’s experience. For Cassie and Ruth, there were no ways to cross over into the normal side of the border with any certainty, although new regimes of DES practice enabled Ruth’s participation in the attempt to be more vocal and more active—that is, in more opportunities to exercise power—than Cassie’s. Esther and Ruth engaged in plays of power with medical authorities, each from a particular location in a specific type of pelvic exam for a specific purpose. Ruth and Esther enlarged the scene to include me in it as a spectator. During a pelvic exam in a teaching hospital to doctor-students, Esther exercised power. As she moved from wonder of medical science to spectator, from patient to teacher, subject to collaborator, a network of power “with mobile and transitory points of resistance” was revealed (Foucault 1978, 96). Uni-

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ties and cleavages were produced; for example, when her physician and the five or six guys engaged in a teaching performance, Esther interrupted their performance. She became teacher and replaced her physician. There was no coherent and consistent binary division between Esther and the medical professionals. In the play of power, this local center produced knowledges about DES cancer and vaginal implants, doctors and women patients, and medical education that was always unstable even as it formed and reformed grids and networks of power. Esther’s flesh-and-blood body was neither normal nor abnormal, but wondrous. Ruth’s narrative about a pelvic exam focused on the TV screen, where magnified images showed her pictures of her flesh-and-blood body and her physician’s actions. She, like Esther, traveled. Ruth traveled from body to a flat surface of codes, from skeptic to believer. She learned to see herself on TV. As her physician became an inept golfer, she became a spectator. In making a decision to have laser therapy and dilation, she exercised power. Even though she knew there was not one right choice, she knew her doctor did not know either. In making this decision, she participated in the production of knowledge about becoming a mother after DES. Her physician drew from what he knew about scar tissue, cervical stenosis, cervical rings, and pregnancy to make a new map for Ruth. In making sense and drawing from bits and pieces of what was at hand, talk and work about vaginas that began in the late 1960s necessitated by DES-infused bodies contributed to a map of the world that today includes spaces for talk and work about vaginas in mobile and transitory webs of power and knowledge. New regimes of DES practice are characterized by webs that range in location from the clinic to the stage. The Vagina Monologues17 has been performed on thousands of stages worldwide (Bell and Reverby 2005); American women can read about cosmetic surgery for their vaginas and labia in popular magazines, discuss it in chat rooms on the World Wide Web, and choose doctors who advertise these services (Davis 2002); or they can purchase She’s Not There, a Book-of-the-Month-Club memoir by the chair of the English Department at Colby College about her change from James to Jenny Boylan (Boylan 2003). DES daughters’ bodies helped create this new space and these new conversations. At the same time, the known and potential future effects of DES on daughters’ bodies require lifelong circulation through systems of medical surveillance.

5

K Power, Knowledge, and DES

T

he previous chapters have foregrounded the experiences of individual DES daughters, exploring how cultural discourses shaped their responses and how collectively their individual responses created new pathways, transformed relations of power and knowledge, and contributed to making new spaces and conversations. In those chapters, I trace the development of medical and scientific knowledge about the effects of DES and draw connections between this development and the experiences of individual DES daughters. In this chapter, I focus on the emergence and development of DES activism as an example of an embodied health movement. I look at the collective efforts of DES activists to “challenge knowledge and practice concerning the etiology, treatment, and prevention of disease” (Brown et al. 2004, 54). I also consider connections between these collective efforts and DES daughters’ personal awareness and understanding of their experiences. A key turning point in DES activism occurred with the eruption of subjugated knowledges—that is, counterdiscourses—during the 1992 DES Workshop. According to Michel Foucault, subjugated knowledges consist of the “buried knowledges of erudition”—that is, knowledge produced by experts within the institution of science but not considered “scientific”— and popular knowledges, typically “disqualified from the hierarchy of sciences,” such as old wives’ tales, naïve knowledge, and knowledge produced by those outside science (Foucault 1978, 80, 81). These two sorts of subjugated knowledges represent “an autonomous, non-centralized kind of theoretical

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production€.€.€. whose validity is not dependent on the approval of the established regimes of thought” (Foucault 1978, 81). Three types of subjugated knowledges circulated at the 1992 DES Workshop: in the organization of the workshop itself, on the workshop floor during panel presentations or discussions, and off the workshop floor outside of formal sessions. These forms of subjugated knowledges produced counternarratives to science as usual at the 1992 workshop and supported a new collaborative phase of interdisciplinary DES research that built on and extended existing alliances. This new phase of research led to the emergence of new pathways and relations of power and knowledge that continue to this day. This chapter shows how the 1992 DES Workshop became a turning point in DES science, with a detailed narrative analysis of the talk at the workshop. It draws its data from a transcript of audiotapes made during the three-day National Institutes of Health (NIH)–sponsored DES Workshop, as well as from field notes; the published Proceedings from the workshop, “NIH Workshop: Long-Term Effects of Exposure to Diethylstilbestrol (DES)”; and materials published in the DES Action Voice and DES Cancer Network News. The DES Workshop was sponsored by the National Cancer Institute (NCI) of the NIH, the National Institute of Environmental Health Sciences (NIEHS), the Office of Research on Women’s Health, and the National Institute of Child Health and Human Development. Interdisciplinary, international, and open to the public, the 1992 workshop brought together biomedical scientists conducting animal and human research, physicians and nurses conducting clinical research and treating patients, attorneys involved in DES litigation, biomedical scientists employed at different federal agencies overseeing DES work, legislators, and DES mothers, daughters, and sons, including the founding members of DES Action and the DES Cancer Network (DCN). I employ narrative analysis to show how during this workshop “science as usual” was disrupted—how participants brought subjugated knowledges into techno-science talk, when they did this, and from what locations—and the effects of this disruption locally and more globally. I translate “talk” into “text” from audiotapes and participant observation at the workshop. The audiotapes were made by the workshop organizers and distributed free of charge to any workshop participants who requested them. I listened to all thirteen tapes closely. I identified people speaking on each of the panels or asking questions from the audience. I looked for instances of personal narratives and other interruptions to “discourse as usual” and responses to these personal narratives and interruptions.1 I transcribed instances that I identified as “subjugated knowledges” or “disruptions to science as usual” and transcribed what came before and afterward to see how it was done interaction-

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ally. I also identified where the disruption occurred and, whenever possible, the speaker(s). None of this talk appears in the published Proceedings after the workshop (NIH 1992). Hence, the subjugated knowledges would remain unseen, and their traces would be visible only in the outcomes of the workshop, if the tape recordings were not heard, transcribed, and incorporated into the analysis. The products would be visible, but the process of how this turning point in “doing DES science” worked would not be. DES activism is a unique example of how embodied health movements emerge and develop when people frame their efforts to improve health care and health research in light of their personal experiences. Since the mid1970s, DES activists have participated in making new pathways and relations of power and knowledge in DES science. I argue that the 1992 DES Workshop was a key event in the development of this embodied health movement. Yet, looking back to the years before 1992, it is clear that DES activists had been forming alliances with biomedical scientists and gaining places at scientific tables since at least 1975. One strand of DES embodied health movement activism—forming alliances—began in the 1970s. It included increasing public awareness about DES, securing funds for research, and challenging corporate power and government policy. To summarize briefly, activists and biomedical scientists successfully advocated together for government task forces on DES (1978, 1985) and provided mutual support for the clinical study of clear cell cancer patients (1984) and nonclinical studies of the effects of DES (1983). The lines of communication and trust activists and scientists had built in these alliances helped subjugated knowledges emerge and become part of the discourse at the workshop. Epidemiologist Shanna Swan, like others, referred to this sort of alliance at the 1992 workshop when she noted that the DES population was “probably responsible for getting this all funded” and thanked DES Action.2 DES activists had already gained a place at the scientific table—another strand of DES embodied health movement activism—before the 1992 workshop and had challenged the science based on their intimate, firsthand knowledge of their bodies and illnesses. This embodied health movement puts science at the center of its work, not only making alliances with scientific experts but also moving fluidly between lay and expert identities and challenging scientific knowledge and practice about the prevention, etiology, and treatment of disease. Beginning in the mid-1980s, DES activists worked to transform traditional assumptions and lines of inquiry regarding the effects of prenatal exposure to DES and approaches to treating DES-exposed people. They sent surveys to their readers to document stories told to them and, on the basis of what they learned, suggested new lines of study in cancer

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recurrence and immune system function. Their 1991 testimony at the NCI interwove traditional scientific claims with those based on evidence from the intimate experiences of DES mothers, daughters, and sons. In their keynote address at the 1992 workshop, Nora Cody and Margaret Lee Braun invoked this previous work, from the “red flags” sent up by DES Action that pointed out “key areas of concern” to the need to “create new models for how to respond scientifically to a population injured by medical action.”3 Their place on the program and the content of their keynote address were made possible by and were continuations of the challenges they had already made to DES science. At the 1992 workshop, activists and experts collaborated together to assess past research and to develop an agenda for the future.

Subjugated Knowledges in the 1992 DES Workshop The 1992 DES Workshop began on April 22, 1992, a date loaded with symbolism because it was twenty-one years to the day after the publication of a paper that is now recognized to be a classic in the annals of medicine: “Adenocarcinoma of the vagina: Association of maternal stilbestrol therapy with tumor appearance in young women,” by Arthur Herbst, Howard Ulfelder, and David Poskanzer, in the New England Journal of Medicine. The 1992 DES Workshop had three goals: (1) to review existing data, (2) to assess areas where research was required, and (3) to foster collaboration between researchers from various disciplines. The workshop was organized by a fourteenmember “Working Group” representing different agencies of the NIH (nine from the NCI, two from the NIH, two from the NIEHS, and one from the National Institute of Child Health and Human Development). One hundred forty-two people were registered for the workshop; twenty-eight of them listed an affiliation with either DES Action or the DCN. Keynote addresses were given by Nora Cody (DES Action), Margaret Lee Braun (DCN), Arthur Herbst (Chair of Ob/Gyn University of Chicago), and biologist Howard A. Bern (UC Berkeley). Herbst and Bern were the coeditors of Developmental Effects of Diethylstilbestrol (DES) in Pregnancy (1981). In addition to the opening session during which keynote addresses were given, there were five sessions at which at least four panelists presented papers: twenty-four speakers total. Each panelist was allotted twenty minutes. At the sixth session of the workshop, chairs of each of the five sessions presented summaries and specific recommendations emanating from their sessions. These were followed by discussion and the generation of a list of recommendations for basic, clinical, and epidemiologic studies and for the development of education and outreach efforts for submission to the NIH. Participants in the 1992 DES Workshop also wanted to secure renewed

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funding for DES research. Four lines of research were already underway— and had been since the 1970s—but federal funding for them had lapsed. In his keynote address, for example, Herbst described the DES Cancer Registry as “limping without NIH support” but expressed his hope that this would change.4 Anticipating the positive outcome of the effort for funds, Vivian Pinn reported in her welcoming remarks that the NIH had already announced a request for proposals from the NCI for the “continuation of follow-up of DES-exposed cohorts€.€.€. [representing] a critical first step in assuring DES Registries, a vital link to the past, are maintained.”5 In many respects, the 1992 DES Workshop represented science as usual. That is, on the surface, it looked like any other scientific or medical academic conference. It had all the necessary ingredients for doing science as usual. It was accredited for continuing education by the Accreditation Council for Continuing Medical Education of the American Medical Association, and physicians could receive up to sixteen credit hours for attendance. It was held at a conference center outside Washington, D.C., where well-dressed professionals, wearing name tags identifying them by name and affiliation, sat in padded chairs at rows of long tables covered with white tablecloths facing a raised platform. From their seats, those in the audience looked at and listened to a panel of experts on the raised platform, who were seated facing the audience at a long table, each wearing a name tag and also identified by a tented place card. Each panelist stood up from the table and walked to the podium when it was his or her turn to summarize research about an assigned topic. The workshop began with a “Call to Order,” “Opening Remarks,” “Welcoming Remarks,” and “Keynote Addresses.” Each session was the only one scheduled during any single time block.6 Many of the presenters included slides along with their lectures—tables, summary texts, or images of human or animal tissues. Presenters joined the audience before or after the session on which they were delivering papers. Each panel ended with a half hour of discussion followed by a break. To participate in the discussion, members of the audience walked to one of the rows between blocks of chairs and stood in line behind a microphone. When someone’s turn came up, he or she asked a question, added to the discussion by contributing data or findings from his or her own (clinical or experimental) research, or commented in some other way on the panelists’ presentations or on comments made by another member of the audience. One or more of the panelists would answer the question or respond to the comment, and then the next person standing in line behind the microphone would take a turn. Audience participants displayed a range of attentiveness. Some people in the audience took notes, some left the room during a session, and some reviewed the workshop program. By the third day, many of the panelists had

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left the workshop, and the number of people in the audience had dropped. All of these patterns reflected science as usual. The presence and participation of activists and women patients were among the 1992 DES Workshop’s distinguishing features and contributed to the interruption of science as usual. Most of the individuals giving presentations at the workshop were biomedical scientists, and most of them were already established as luminaries in the world of DES. The audience in attendance was more eclectic, including other biomedical scientists and clinicians, science writers, attorneys, reporters, and twenty-eight members of DES Action and the DCN. People exposed to DES also participated in the workshop. Some of them were patients of the panelists; their embodied experiences of being screened for and having cancer, infertility, miscarriages, or other DES-related health problems were included in the data presented at the workshop. Another distinction of the workshop was the continuing eruption of subjugated knowledges, knowledge that is usually relegated to the margins of science, during the workshop “talk.” Three sorts of disruptions occurred during the 1992 DES Workshop. The first was in the organization of the workshop itself, such as the inclusion of DES activists as speakers in the first session (as well as the order of speakers during this session) and their inclusion in the audience for each of the sessions. A second type of disruption occurred on the workshop floor, at the beginning or end of a panelist’s presentation or during the discussion sessions following panelists’ presentations. Subjugated knowledges also emanated from multiple positions. Sometimes a member of the audience would disrupt the discourse with a question or comment; these audience members included panelists from other sessions and nonpanelist biomedical scientists and activists. Sometimes the discourse would be disrupted by a panelist. A third type of disruption occurred during the workshop but outside the formal sessions. These included a performance in a hotel room of My Virginia, a one-woman play written and performed by DES daughter Darci Picoult; videotaping of a film by a DES daughter who had surgery for vaginal cancer two years previously, documentary filmmaker Judith Helfand (who would later make Blue Vinyl, a well-respected film on polyvinyl chloride, PVC); and a press conference, parts of which were later televised on CBS Evening News with Dan Rather. Scenes from the press conference and the CBS Evening News report and from the discussion in the hotel room following Picoult’s performance were later incorporated by Helfand in her film A Healthy Baby Girl. The eruption of subjugated knowledges on and off the workshop floor was informed by personal awareness and understanding of participants’ experiences, particularly of DES daughters. Actions in the 1992 workshop

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illustrate how activists drew from their embodied experiences to challenge experts, to gain legitimacy and to blur boundaries between experts and laypeople, and to initiate novel ways of doing science. These actions also demonstrate how embodied health movements, such as that related to DES, are hybrids in which scientists, state officials, and others who may not typically be identified as members of a health social movement participate in health activist cultures.

Undoing Science as Usual in the Workshop Organization The order of speakers during the opening session was carefully chosen by the workshop organizers. The workshop opened with a call to order by Ruthann Giusti, from the NCI, and opening remarks by Representative Louise M. Slaughter (D, NY), who had sponsored state and federal legislation to support research, education, and compensation for people exposed to DES. Slaughter, at the time seeking to pass legislation to revive the government’s commitment to funding and pursuing DES research, wanted to “give voice to the millions of mothers, daughters, and sons” by reading excerpts from the hundreds of letters they sent to her.7 What happened after Slaughter’s remarks was a departure from the typical organization of an opening session. One of the keynote addresses was given before the welcoming remarks. Slaughter was followed by DES activists Nora Cody and Margaret Lee Braun, who jointly gave a keynote address. After their presentation, Vivian Pinn, director of the Office for Research on Women’s Health (part of the NCI), then delivered the welcoming remarks. In anticipation of the workshop, a number of participants had asked Pinn why the agenda was reversed so that her welcoming remarks followed Cody and Braun’s keynote address. According to Pinn, the workshop organizers chose this order because Cody and Braun were such elegant, eloquent, and passionate speakers, and the workshop organizers thought “there would be no better way to set the stage than to hear from the representatives of DES Action first€.€.€. so that they could clearly set the stage and the passion” for the rest of the workshop.8 In their keynote address to the 1992 DES Workshop, “Educating the Public about DES,” Cody and Braun testified to the benefits of citizen and scientist alliances. Both of them publicly named elements of the DES embodied health movement. Cody, the executive director of DES Action, stated that “at times DES Action has sent up ‘red flags’ pointing to key areas of concern,” such as the possibility of impaired immune systems that were later confirmed by the National Cooperative Diethylstilbestrol Adenosis Project (DESAD study). She promised in her address that “DES Action and the DES Cancer Network [would] continue to bridge the gap between the scientific com-

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munity and the public, reporting new findings to the affected populations.”9 Braun, director of the DCN, echoed Cody when she bluntly asked the biomedical scientists, “What does your world have to do with mine? Everything. Without data, all we have are anecdotes, and anecdotes are inadequate for our survival.”10 She went further than Cody in heralding the benefits of alliances as well as calling for changes in scientific research: We may find as we proceed that we must create new models for how to respond scientifically to a population injured by medical action.€.€.€. Two decades after the alarm on DES we need a new phase of DES research€.€.€. that benefits DES-exposed people by giving information back to them€.€.€. that stretches the boundaries of traditional methods of recruitment, using, perhaps, concepts of community consultation—involving patient groups. And, so importantly, one that provides for communication and collaboration among specialists and between disciplines.11 The atypical order of speakers in the opening session meant that the workshop program began by introducing social and emotional dimensions of DES, the voices of people exposed to DES, and the discourse of activism. Among other things, this strategy introduced and legitimated subjugated knowledges, such as narratives of personal experience, in the discourse of the workshop. Most often, personal narratives were produced by DES daughters during discussions, but they were also produced by scientific experts. For example, when she began the first session, “DES Associated Malignancy— Unresolved Issues,” the session chair, epidemiologist Lynn Rosenberg, described her personal introduction to DES “thirteen years ago, when a young woman who had developed clear cell cancer of the vagina came to work with [her] research group.”12 After Rosenberg introduced the first speaker, statistician Theodore Colton, as an “old friend,” Colton waxed nostalgic and told a story about the history of his involvement with DES before launching into his presentation about the risk of breast cancer in DES mothers.13 The workshop program began and ended with talks about the social and emotional dimensions of DES and the role of activists. This way of organizing the workshop simultaneously gave prominence and credit to DES activists and acknowledged that DES exposure has consequences beyond the physical ones. Paradoxically, it also meant that those presenting during sessions two through four of the workshop, all of them on the second day (Screening and Treatment for Vaginal Clear Cell Cancer; Immune Sequalae of Developmental DES Exposure; and Developmental and Reproductive Effects of Exposure to DES), were less likely to hear these messages at the end of the workshop

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or participate in developing recommendations to the NIH, because they had already left the workshop by the third day. Indeed, fewer animal or clinical researchers attended the third day of the workshop, and many of those who were in attendance had already formed alliances with and acknowledged the contribution of people exposed to DES (e.g., Colton, Bern, McLachlan, and Herbst).

Disruptions on the Workshop Floor One of the unique ways in which subjugated knowledges entered the 1992 workshop was when DES daughters talked about their experiences. For example, after the last speaker of the first session (DES-Associated Malignancy—Unresolved Issues) had given his presentation, a few minutes were left for questions and comments from the audience. The chair of the session, Rosenberg, reminded everyone that the “ultimate goal” of the workshop was to “come up with a research agenda to suggest to NIH” and invited anyone who had research items to suggest that had not already been proposed by the panelists to come up to the microphone and put them forward.14 Two DES daughters, one DES mother, and two speakers who reported they were members of DES Action were among the twelve women and four men who stepped up to the microphone. Before one of the DES daughters took her turn at the microphone, all the people who asked questions or made comments stuck to the topic of the session—DES-Associated Malignancy— although they covered a wide range of topics within this rubric. The DES daughter, on the other hand, presented a “wish list.” Her wish list shifted the topic from DES-associated malignancy to nonmalignant effects of DES, a topic that would be addressed later in the workshop. She wondered about women exposed to DES but who had not developed “the cancer.” She then asked the panel, “What can what should we do in our lives not just about cancer?” She went on to ask several questions: If a woman was trying to conceive, should she take Clomid? If she was approaching menopause, should she consider estrogen therapy? What about follow-up studies of DES daughters who had taken birth control pills? She wanted a specific protocol—“yes, this is the right thing for you to do, or no.”15 Rosenberg responded to this DES daughter, incorporating her comments into the discourse of the session by saying, “I’d like to jump in and thank you for that comment, ’cause these were several of the questions that I raised in my introduction [to the session]. There’s absolutely nothing known about these issues that you’ve raised.” Rosenberg’s response gave support to the topic shift and treated it as a continuation of the session rather than an interruption to it.

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Rosenberg’s support for this DES daughter’s wish list also supported the introduction of knowledge that is usually relegated to the margins of science. She validated the insertion of personal knowledge into a discussion about a DES research agenda and posing the question in individualistic instead of probabilistic terms. One of the effects of Rosenberg’s response could be seen in the next speaker. The man who stepped up to the microphone said he was affiliated with NIEHS and began his question by acknowledging it was “now a little inappropriate” but all the same directed his question to the experimental scientists and epidemiologists.16 Although he turned the discourse away from personal experience, he marked this move with a disclaimer. In this instance, the speaker treated science as usual as an interruption to the discourse of subjugated knowledge, therefore effectively legitimating the introduction of subjugated knowledge into the session.17 Another location in which subjugated knowledges were inserted into the discourse of the 1992 workshop was the end of panelists’ presentations—for example, during the session of the workshop entitled, “Immune Sequelae of Developmental DES Exposure.” Four speakers were on the panel: Michael Luster, an immunologist who was at the time the head of Immunotoxicology at the NIEHS; Phyllis Blair, professor of Molecular and Cell Biology at UC San Francisco; epidemiologist Deborah Wingard, associate professor of Community and Family Medicine at UC San Diego; and Kenneth Noller, chair of the Department of Obstetrics and Gynecology at the University of Massachusetts Medical School. The third speaker, Wingard, the most junior panelist and a member of DES Action, delivered a paper entitled, “Epidemiologic Evidence of Immune Dysfunction and Other Effects Among Those Exposed to DES.” Aside from DES activist Braun, Wingard was the only panelist at the 1992 workshop who identified herself as someone exposed to DES. Wingard’s task at the workshop was to review existing epidemiological studies of possible immune dysfunction among patients with DES exposure. At the time, there were only five published studies on the topic, including the publication resulting from her survey of DES-exposed individuals in the DES Action Registry. Wingard used her position on the panel not only to advocate for more funding and support for DES research but also to change the science. She recommended novel ways of assembling subjects to enlarge the studies and thereby enable the identification of rare diseases. In addition, she advocated for multidisciplinary collaborations in which investigators would let the personal illness experiences of DES-exposed people help shape the science of DES and would “listen to those that are DES exposed,” because they had a lot to contribute to the production of knowledge about DES. Wingard had helped DES activists gain legitimacy by working with them in the past, and she did it again

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here by acknowledging their contributions in her publication and workshop presentation. Her presentation is one example of how “buried knowledges of erudition” can disrupt business as usual. Wingard had been moving between “lay” and “expert” identities at least since 1984, when she and her students at UC San Diego had provided the research strategy and analysis of an informal health history questionnaire sent to DES Action Voice readers to “document and count [their] stories.”18 Wingard had formed an alliance with DES Action, not only by collaborating on the survey but also subsequently by publishing the results in the Western Journal of Medicine (1988) with coauthor Judith Turiel, from DES Action. The project gained its inspiration from anecdotal reports to DES Action from readers of having impaired immune systems, letting their personal illness experiences identify possible lines of scientific inquiry. The results of the health history questionnaire supported the other anecdotal reports of the possibility of an impaired immune system, now the topic of a session at the 1992 workshop. Here is what Wingard said at the end of her presentation, in her recommendations: we need to maintain contact with the major cohorts so that we’ll have good follow-up data and this may mean to establish new cohorts and to merge them mostly the—the large studies we’ve seen have had two to three thousand people well with these rare diseases you will not see an association with that few number so we clearly need to merge—merge data with more than a sample size of three thousand and finally I think multidisciplinary collaborations are critically important here we recently are finding out that there is animal research supporting the epidemiological research and vice versa and I think this kind of collaboration is very uh critical (pause) and I’d like to add I think it’s real important to listen to those that are DES exposed I think they have a lot to contribute in a—

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I know we all appreciate their presence here and I—I actually should put our presence here—here since I am also a DES daughter thank you19 Wingard revealed her identity as a DES daughter only at the end of her presentation. The pause (“and I think this kind of collaboration is very uh critical [pause]”) signaled to the audience that something important was about to be said: “it’s real important to listen to those that are DES exposed.” The repetitions (“I—I,” “here—here”) conveyed some discomfort about the information that followed, that she was a DES daughter. Valuing the embodied knowledges of DES daughters and identifying herself as one of them risked discrediting her identity as a scientist and diminishing the effect of her presentation on the science of immunological problems associated with DES exposure. DES daughters were not the only people to introduce embodied discourse. Medical scientists also drew from their experiences. Sometimes, subjugated knowledges emerged at the beginning of panelists’ presentations. The fourth session, “Developmental and Reproductive Effects of Exposure to DES,” had six speakers, three of them delivering remarks before an afternoon break and three speaking after it. Swan, chief of the Reproductive Epidemiology Program, California Department of Health Services, was the first to speak after the break, giving a talk about “Pregnancy Outcomes in DES Daughters.” After thanking the session chair (Dr. Mark Phillippe, a maternal fetal subspecialist from the University of Chicago) and the workshop convener (Dr. Giusti), she praised DES activists for their interest in and sympathy for DES science as well as their advocacy for funding.20 She began her presentation as follows: Thank you Dr. Phillippe and um Dr. Giusti uh and everyone else who organized this remarkable um conference and I just like to say a couple words about what I find to be particularly remarkable for—for me uh in my with my hat as a public health um official (laughs) if you will uh I—I spend um less and less time quite a bit of time talking about research to um communities concerned communities concerned citizens and um unfortunately that’s often done in an environment

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that’s pretty hostile uh typically you know we’ve done the best study we could and then we come to the community with some results and get torn apart (exhale; sort of laugh) so it’s uh particularly uh exciting and refreshing to feel that the community uh of interest which is the DES uh population is um not only interested in the problem and sympathetic but actually is probably responsible in getting this all funded so I would like to give a thanks to DES Action (applause) um now I’m gonna talk about um reproductive problems21 In contrast to Wingard, Swan did not align herself with DES activism as a participant inside the movement. Instead, she located herself as a public health official to whom “concerned communities concerned citizens” looked for answers. She reported that her actions were not typically thought to be part of any social movement strategies. To the contrary, generally they were treated as oppositional to social movements by hostile communities and citizens. Wearing her public health official hat and doing her public health official work had often led her to get “torn apart” and not listened to sympathetically by communities. But her DES science was different. At the 1992 workshop, she located her work within a culture of action in which the DES embodied health movement took place. Sitting at the same table with DES activists, Swan told the audience that she was grateful to them for their successful work in securing funds to support the 1992 workshop. Even though Swan’s words exemplified successful alliances between activists, public officials, and scientists, they did not contest or attempt to reshape the science itself. As opposed to Wingard, who used her position to advocate for the legitimacy of DES activism and to change the science of DES, Swan found herself in a position of alignment with DES activism. She told the audience that she found the alignment of her work and DES activism remarkable, exciting, and refreshing. Swan’s words testified to the ways that this embodied health movement contributed to new spaces and conversations. Another medical scientist who drew from his embodied experience was physician John Gunnar-Forsberg, professor of Anatomy at the University of Lund, Sweden. During the sixth session of the workshop, participants made recommendations for future research. Each of the session chairs provided a

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list of recommendations, and then members of the audience participated in adding, deleting, or commenting on items listed. Giusti—the workshop organizer and convener—introduced the final session by informing participants that during this critical part they would sit down, put pen to paper, and come up with some focused and specific recommendations for additional research, funding, and so forth based on the many comments made during the workshop. The session began with the topic of education and outreach efforts. At several points during this discussion, Giusti repeated her request to focus on the agenda. One of them was in response to Gunnar-Forsberg. He stepped up to the microphone, identified himself, acknowledged some confusion about the education and outreach discussion, and then said: first I would like to give you some personal weakness if you are interested you could listen if you are not interested you can close your ears I have no support from NIH I am leaving this afternoon (laughs) I am not a DES-exposed man I am not a practicing doctor but I am a man who has been interested in DES and its effects since 1971–72 and I have the deepest compassion with the DES-exposed women in this country from the deepest depths of my heart for 200 percent I am also a man in an—an age where different types of diseases appear and even life-threatening diseases and I person’personally know the feeling when lying on an examination table watching section by section segment by segment of an organ passing on the television screen while you are just wondering what will follow on the next segment will that be compatible with an activity tomorrow or will it be—will it result in ruined hope and doing nothing else in the rest of your life (pause) I can understand the feeling of fear of anxiety and everything in the DES-exposed women and I think that this is the primary interest for efforts from NIH to relieve this problem I think NIH should do whatever they can

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to introduce the best available surveillance program to follow the cancer development but from my point of view we can follow the development of the situation month by month year by year the best available surveillance program we can have and moreover primary goal in this situation must be that NIH must support the exposed population in all different ways of life psychological psychiatrical [sic] in all aspects22 His personal narrative was followed by applause and a “whoop” from one audience member. Gunnar-Forsberg’s comments were important, because he was one of the “pioneers” in “sustained research on animal models for the early developmental effects of long-term exposure to sex hormones.”23 Earlier, he had presented a paper during the fourth session of the workshop, “Developmental and Reproductive Effects of Exposure to DES.” His paper, “Vaginal Morphogenesis,” had drawn from his experimental studies of newborn female mice and human female fetuses to describe different phases in the development of the human vaginal epithelium. At the end of the workshop, in the last session, Gunnar-Forsberg witnessed the embodied experiences of DES daughters by connecting his personal experiences with theirs, not because he “is” a DES daughter or because he “is” a clinician caring for DES daughters. His connection with them was his personal experience as “a man” who had lived with the experience of uncertainty when he was a patient “lying on an examination table,” watching his organs on a television as they were being screened for a disease and “wondering what will follow on the next segment.” Gunnar-Forsberg also validated the use of personal experiences as the basis for developing research policy, calling it “the best available surveillance program” in NIH support for the exposed population. This is also an example of subjugated knowledges being absorbed into the discourse of science as usual. Here, the response (repair) was by the workshop convener and chair of the session: I would just like to make a comment it’s clear to me we have perhaps an impossible task I’d like to try to keep us focused um on education and outreach efforts and very specific recommendations to implement24

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Giusti acknowledged being engaged in “perhaps an impossible task.” The words “impossible task” referred to the goal of the session, which was to generate specific recommendations for education and outreach. The implication was that the task was enormous, and there was not enough time to complete it. To remedy this, Giusti announced that written recommendations for education and outreach could be submitted after the workshop for up to a period of two weeks. (Recommendations were submitted from DES Action USA/DCN, and they were published as Appendix 5 in the Proceedings of the workshop.) But the words “impossible task” may also have referred to the workshop itself. The audience response to Gunnar-Forsberg had been applause and a “whoop,” not the usual scientific meeting response to a question or comment from the floor. From the opening session, the workshop had fostered and included subjugated knowledges in the discourse instead of marginalizing and excluding them. To “do” embodied science, avoiding the dangers of either anecdotes without data or data without anecdotes was “perhaps an impossible task.” The difficulty of this task is exemplified by an exchange during the discussion following the fifth session of the workshop, “Education and Outreach Efforts.” A clinical psychologist who was also a DES daughter took a turn at the microphone to address the issue of communication. During her comment, she reported that she had had multiple surgeries and pregnancy losses. At the end of her comment, she said that she considered herself well educated and certainly well informed about DES um seeing probably one of the top people in the country but when it came to making decisions about my medical care and I went to get second third fourth opinions by the other most famous people uh some of whom are here today uh they were very disparate opinions and these were among the top people there was no one further to go to .......................... and at the same time that I had a prophylactic cerclage put in when I finally did become pregnant a very good friend of mine was seeing one of the other doctors

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and did not and neither of us had a reason to put it in other than our DES exposure and I hope I don’t cry when I say this she’s a—she’s a good friend she lost her baby at 26 weeks and she’s in pretty bad shape uh and my baby was born prematurely and in fine shape uh so I think there needs to be some kind of research about um what the risks are in not doing it as opposed to the risks in doing it cause if the risks in doing it are infection and the risk in not doing it losing the only pregnancy you may ever attain through IVF or whatever I think that the uh daughter needs to know that the risks are worth addressing thanks25 As she finished, psychiatrist Roberta Apfel, a panelist on the fifth session, Education and Outreach Efforts, thanked her. Apfel repeated one of the messages of her presentation about the long-term emotional risks of DES exposure—that “the risks need to include the emotional part of it, which is very hard to calculate.”26 Apfel’s response to this DES daughter legitimated the use of personal narrative and the expression of emotions during the discussion of education and outreach. She also supported the woman’s critique of the clinical science of DES pregnancies that was based upon her intimate, firsthand knowledge of her body. Beyond legitimating this way of knowing, Apfel also went further and spoke in favor of the documentation of emotional effects in the scientific study of DES, recognizing the difficulty of calculating them. Later in the outreach and education discussion, Phillippe, who had chaired the panel on Developmental and Reproductive Effects of Exposure to DES and was a practicing clinician taking care of high-risk pregnant women at the University of Chicago, challenged what he heard as a different “take home” message in this DES daughter’s story.27 He focused on her use of anecdotal evidence:

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communication particularly at this session is an issue the issue of cerclage is almost like the issue of DES that we really cannot be anecdotal that I think for one person to say “well gee I had one I had a baby somebody else didn’t have it and lost theirs” is basically the same rhyme and reason why DES was used in the first place one really has to look at studies and to look to at the experiences that are available ............. so I think that the patient has to clearly uh make demands on the clinicians and discuss th’their options but I—I think one has to—to have a certain amount of—of baseline information and again get multiple opinions and when there are clearly differences of opinion it usually reflects the fact that there’s not an absolute standard of care that’s available that in fact there are several ways of doing something28 This was followed by applause. Phillippe’s warning was effectively that reliance on anecdotal evidence instead of on systematic studies had been a crucial factor in the widespread use of DES during pregnancy before 1971. The applause signaled approval of his warning: Reliance on anecdotes to guide clinical practice could lead to another DES and thereby undermine efforts, such as those underway at the 1992 workshop, to develop the science of DES. Phillippe also defended the lack of agreement among DES specialists. Because there was not an absolute standard of care for pregnant DES daughters, disagreement among specialists indicated the need for caution. At the same time he warned against the use of anecdotal evidence (par-

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ticularly its use by patients), he was also defending the power and cultural authority of medicine and showing the limits of what could (should) be negotiated with patients. Phillippe injected a note of caution in response to the DES daughter’s criticism of “famous” DES experts caring for pregnant DES daughters, “uh some of whom are here today.” He warned of the dangers of giving a take-home message to women that they should “go home insist that your doctor do this.” Phillippe also seemed to be defending his honor and that of the other DES luminaries at the workshop by not remaining silent during the discussion. That is, he seemed to be responding on several levels: One was a negotiation about what sort of knowing “counts” and who has the authority to know, and the other was a defense of his honor and that of other clinicians at the workshop by explaining that the actions the DES daughters’ physicians took were positive indications of scientific medicine and its excellence. Apfel responded to Phillippe: one of um my take-home messages is you need both that we need the RCTs [Randomized Controlled Trials] we need to know for certain whether cerclage should be used or not but that we also need to hear the anecdotal stories ...................... as part of what we consider in this whole picture29 Apfel acknowledged the danger of making medical decisions based only on anecdotal evidence and showed empathetic support for this DES daughter and the point of view she espoused. Finding a way to blend anecdote and data is a negotiated process and can be fraught with discord. Doing science differently on the workshop floor was not an easy project. This DES daughter’s personal narrative and recommendation based upon her lived experience, as well as the responses to her by Apfel and Phillippe and the applause following Phillipe, attest to that.

Disruptions off the Workshop Floor The work of conferences typically spills over beyond the floor and occurs outside the official program, in spontaneous caucuses and planned meetings for individuals and groups during meals and over drinks or coffee. The 1992

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DES Workshop also included this sort of work, which was encouraged by the organizers. Some panelists referred to this work in their presentations. They reported potential research collaborations or future projects for the study of DES that had emerged as possibilities when they had talked together informally off the workshop floor. An example of this occurred during the discussion to generate recommendations about the immune sequelae of DES exposure (the topic of the third session) at the sixth session of the workshop. Kenneth Tung, who had chaired the third session, referred to speaking with a panelist on a different session about the use of nude mice for studying the effect of different agents on human tissues and of a second mouse called “skiphue [?] mouse” with no immune system that can be used for studying the human immune or reproductive systems.30 There were also some disruptions to discourse of DES science as usual off the workshop floor. For example, Apfel, the last speaker during the fifth session about education and outreach, was the only panelist to acknowledge these. During her presentation, “Long-Term Emotional Effects of DES Exposure,” she said of the DES cancer daughters that “we’ve seen some remarkable examples of their artistic creative endeavors€.€.€. the past few days from Darci [Picoult] and Judith [Helfand].”31 The artistic creative endeavors she referred to were a video-diary in process by Helfand (1996) and a one-woman play written and performed by Picoult (1991) at the workshop. DES cancer daughter Helfand was registered for the 1992 workshop, but Picoult’s name is not among the list of 142 people registered for it. Performances of their “creative artistic endeavors” were not listed in the program or advertised by signs posted at the registration desk. The official workshop tape recordings do not include these off-the-floor disruptions to science as usual. Had Apfel not referred to them, they would have remained marginalized, unseen and unheard by all but a few of the participants at the workshop. Significantly, this acknowledgment came at the end of the workshop. It was made by a psychiatrist (the only psychiatrist on the formal program) and occurred during a session about education and outreach.32 For many years, Apfel had been bridging lay and expert positions. Like panelists Rosenberg and Wingard, she used her position on a panel to legitimate and to validate the contributions of DES activists. But what makes her contribution different from theirs is that she did not introduce a personal narrative about her connection with the activists. Instead, she marked her talk as different from usual by resisting the practice of projecting slides to summarize points. She invited people to “savor this historic moment” and to “look around” at each other instead of looking at data projected onto slides. She went on to say:

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I have uh chosen today not to use slides because I found it very hard to summarize what I had to say into some neat slides and because I also wanted us all to savor this historic moment and to be able to look around and to see this encounter that we’ve had these past few days of DES activists of clinicians of researchers of people from all over the world who have been affected deeply by this one problem33 Picoult and Helfand were both in the process of producing works of art about DES. In their projects—Picoult’s play My Virginia and Helfand’s film A Healthy Baby Girl—they each drew from their own autobiographies as well as from interviews and archival materials to explore complicated relationships between DES daughters, their families, and physicians. Both projects were infused with the promise of DES and the trauma of DES cancer and linked personal relationships with the public issues of medicine’s golden age, pharmaceutical manufacturing practices, and the worlds of DES science, legislation, and litigation. Their projects can be seen as works of art in their transformations of the mundane world occupied by DES daughters into a metaphoric world of living with DES (Radley 2002; Radley and Bell 2007). They also can be seen as subjugated knowledges in their insertion of popular knowledges, which were “disqualified from the hierarchy of sciences,” into the discourse of DES, even though they were performed off the 1992 workshop floor (Foucault 1978, 82). DES cancer daughter Picoult is an actress, playwright, and journalist. My Virginia was her first play, based on interviews with DES-injured men and women, doctors, and lawyers as well as her own experiences. First performed in 1991, the one-act play begins with the birth of Picoult and her twin sister (“I’ll start at the beginning. My birth announcement went something like this”)34 and connects Picoult’s individual life story with stories of other DES daughters and to the history of DES, the politics of funding for health research, drug liability law, prestige in biomedical science, and DES activism. The central character in the play, “Julie,” is inspired by a DES daughter who died from a recurrence of DES-related cancer. Julie’s character describes her marriage, recovery from surgery and radiation therapy, adoption of her daughter, and the proceedings and outcome of a lawsuit she had filed against the pharmaceutical manufacturer Eli Lilly.

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At the 1992 workshop, Picoult performed the ninety-minute play while seated in an armchair, taking on the voices and manners of the different characters in it (her mother, sister, doctor, lawyers, Julie, Julie’s husband, and so forth). As suggested by the pun in its title, My Virginia uses comedy as one device for engaging audiences. For example, the text of the birth announcement connects the medical and agricultural uses of DES, a link that is made explicitly later in the play: The breeders: Barbara (the hen) and Ben (the rooster) Have something to crow about! Two chickadees hatched October 11th 1956. Darci, four pounds, one ounce, and Darri, three pounds, five ounces. The play on words—“Virginia” is “vagina”—also introduces the serious subject of vaginal cancer. The multiple characters and multiple voices in My Virginia provide education, critique, and calls to action. These range from the details of DES history in humans and animals to the intimate details of what it was like to grow up as a DES daughter and the embodied experience of living with cancer. The play ends with Julie’s death: Darci: Before Julie let go She told me how wonderful it was to spend the last few weeks of her life with her mother. To talk and say everything that hadn’t been said. Which is why I am here, To tell you what hasn’t been said. Because I think you should know. Picoult performed My Virginia in a hotel room, not on the workshop floor or in one of the public rooms at the conference venue. The audience was composed of individuals who were invited to it or were brought by someone who had received an invitation. The size of the audience was limited by the way invitations were issued and the size of the hotel room. Some sat on a bed, whereas others stood in a doorway or sat on the floor, literally spilling over into the edges of the room as they figuratively expanded the edges of the 1992 DES Workshop. My Virginia privileged the firsthand intimate knowledge of women whose bodies had been exposed to DES. The “we” that saw Picoult’s “creative endeavor” during the workshop consisted of DES activists and DES cancer daughters as well as a few scientists who had already allied themselves with the DCN, notably Rosenberg and Apfel. I was also there. Although I

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had never met her nor heard of her until I saw My Virginia that evening, “Julie” was known to most of the DES cancer daughters in the audience. The performance of My Virginia was stunning, a counterpoint to the other types of visual performances occurring on the workshop floor in the form of slides, tables, graphs, and verbal descriptions of the effects of DES exposure. It marked out a space owned by activists and their invited guests, a reversal of the dynamics on the workshop floor. Apfel’s reference to it during her presentation staked this claim publicly, making visible one of the ways in which science was being “done as usual” and “not done as usual” at the 1992 workshop. My Virginia was “healing” for Picoult and her mother (Beyette 1994). A few years after the workshop, in an article published by the New York Times Syndicate in the “Women in the Arts Speak Out” column (“A DES Daughter Educates Women About the Pregnancy Wonder Drug,” 1994), Picoult wrote that she “‘wanted to make the invisible effects of DES visible’ to show how her experiences were bigger than her family to audiences in need of an education: ‘Maybe “My Virginia” needs to travel€.€.€. along with Judith’s film [A Healthy Baby Girl].€.€.€. Through our words we will begin to teach. This perhaps, is the greatest healer of all.’” Picoult established a connection between her project and Helfand’s. She drew from Helfand’s embodied knowledge in writing and acting in her play, and, in turn, Helfand drew from Picoult in filming and producing her video diary. Helfand is an independent film- and videomaker. She was still in the process of making A Healthy Baby Girl when she registered for and attended the 1992 DES Workshop. In my field notes and memory of her at the workshop, I see her filming constantly. Her eye seemed glued to her video camera. A Healthy Baby Girl documents Helfand’s experiences from 1990 until 1995, beginning with her diagnosis of clear cell cancer of the cervix and ending with the fifth anniversary of her surgery. She is the narrator, central character in, producer, codirector, and cowriter of it. As did Picoult’s project, Helfand’s project produced another way of seeing and of making visible the evidence of the effects of DES, alongside the images of cells and organs, tables, and graphs that were shown by panelists at the workshop. It was all done off the workshop floor—she was not a panelist, and her film project was not a topic for discussion—until Apfel brought it to the workshop floor in her reference to it. When Helfand turned on her video camera during the 1992 workshop, she exercised her right to document the proceedings and to take notes. She filmed from the beginning to the end of the workshop (from the opening session to the sixth session) and all different parts of it (panels, discussions after panels, the last session, hallway conversations). Later, she incorporated foot-

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age from the workshop into A Healthy Baby Girl—a clip of Giusti delivering her remarks at the podium during the opening session as the other panelists sat in their seats; two DES activists at the microphone during discussions; Rosenberg standing beside an overhead projector on the podium in front of a large screen as she recorded recommendations during the sixth session about DES-related cancer to submit to the NIH after the workshop; an extended hallway conversation between Helfand and a man she had known in college catching up (he had become a lawyer and worked for a firm that did “pharmaceutical defense”). The man’s face was blocked out, but Helfand did not turn the camera away from him during their conversation. Although Helfand might not describe her actions in quite this way, documentation enabled her to go over the experience again and use the videotape as a kind of “touchstone” (Spence and Coward 1986, 25). Exercising her right to use her camera was also an exercise of power. She turned the eye of the camera onto the researchers/clinicians, gazing back at them as they had gazed at her when she was a patient/subject of DES medical science. When she came to the 1992 workshop, Helfand brought a short videotape that she had cut together from the first few years she had been working on A Healthy Baby Girl. She showed it to some members of DES Action and the DCN, Apfel, a film producer,35 and me. To view the film, we sat around a table in a small conference room outside but adjacent to the workshop floor and then talked about our responses to it. When Helfand told us she would like to screen it on the floor of the workshop—to show the doctors and scientists what it felt like to have DES cancer—I found myself cringing. She seemed too fragile to put herself on a screen in front of them, so I discouraged her from doing this. I do not remember the responses of others during this discussion and did not write notes after the discussion except to record my own responses. Ultimately, Helfand decided not to attempt to screen the tape on the workshop floor. I had never met Helfand before the workshop. It could be that my worries at the time were grounded in what happened during a press conference during the first day of the workshop. The press conference announced the proposed research and education bill sponsored by New York Congresswoman Slaughter. Helfand, along with other DES activists, was asked to speak. When the press conference was reported on the CBS Evening News with Dan Rather, a clip of Helfand was used, during which she began to cry: “My name is Judith Helfand, I’m twenty-seven years old, and two years ago [crying], well it’s very painful, it’s a hard thing to talk about in public because.€.€.€.” Helfand “sobbed” and was unable to continue.36 An unseen CBS newscaster said, “What is hard for Judith to talk about is DES” and then continued with the news story. The camera cut away from Helfand and displayed the woman

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reporter on the television screen (Helfand 1996). Helfand incorporated this part of the newscast into her film, interweaving it with footage she had shot at the 1992 workshop. On the workshop floor, when Apfel told the audience that “we’ve seen some remarkable examples of their artistic creative endeavors,” the “we” included only those who had attended their performances, and only those who had attended could fill in the details of what these “artistic creative endeavors” were.37 Apfel acknowledged the different types of spaces at the workshop as well as the different kinds of knowledges produced during it, suggesting that there were different margins and centers of action over the course of the two and a half days. She allied herself with people exposed to DES, particularly DES cancer daughters, and brought their subjugated knowledges to the workshop floor and to the attention of other workshop participants.

Following Up after the 1992 DES Workshop Participants at the 1992 DES Workshop set new terms of work, barely visible in the published “Workshop Recommendations for Future Research Concerning Long-Term Health Effects of DES Exposure” (NIH 1992, 63–64) in the official Proceedings. None of the presentations from the opening session is published in the Proceedings, and none of them is listed in its table of contents. Instead, the published Proceedings begin with a “Background Statement” by an anonymous author (NIH 1992, 1–8). The only record of the changed order of speakers during the workshop appears in Appendix 1, “Workshop Agenda” (NIH 1992, 65–68). None of the panelists’ verbal insertions of subjugated knowledges at the beginnings or ends of their presentations or during discussions is included in their published papers. Neither are any of the disruptions to discussions at the ends of sessions by audiences or panelists in the published Proceedings. All these disruptions appear only in the informal notes written, videotapes shot, and audiotapes recorded at the workshop. Thus, nonofficial material such as this may be a prerequisite to understanding how science works and to seeing it in action, particularly to identify interruptions to science as usual and possibilities for its transformation. In the Proceedings, the “Workshop Recommendations” are presented in outline form in five general categories (epidemiologic studies, basic science research, studies of vaginal clear cell cancer, clinical studies of pregnancy outcomes, and education and outreach efforts). The new terms of work are visible in the epidemiologic study recommendation to “support registries of DES-exposed individuals as a resource for epidemiologic research,” changing the terms of recruiting subjects and creating collaborations between activists (from DES Action and the DCN) and experts in the identification and

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recruitment of subjects. The new terms of work are also suggested in Appendix 5, “Recommendations—DES Action USA/DES Cancer Network,” submitted by DES activists in response to a request by the workshop convener, Giusti, as time ran out during the last session of the workshop when participants were generating focused and specific recommendations for research on education and outreach (NIH 1992, 87–92). Giusti announced a two-week period of open comments following the workshop and implored DES activists to help identify existing educational resources and suggest ways that linkages could be made, because she knew they already had educational structures in place (NIH 1992, 87–92).38 In response to her request, DES activists submitted a list of twelve recommendations to the NIH DES working group: eleven of them for linking DES Action, the DCN, and biomedical scientists and one for a detailed description of education and outreach recommendations. DES activists advocated continuation of the working group that planned the 1992 workshop and the addition of representatives from DES Action and the DCN. They also recommended a methodological study to “investigate ways to document and identify exposure to DES in the absence of (often unavailable) maternal medical records” and linking DES-exposed cohorts and controls with researchers to provide blood and tissue samples (NIH 1992, 87–88). The twelve recommendations were published as Appendix 5 in the Proceedings (NIH 1992). After the 1992 workshop, and as a result of extensive campaigning by DES activists, Congress unanimously passed federal DES legislation that provided federal funding for educational and outreach projects, clinical follow-up studies, and experimental research (Cody 2008).39 The federal funding required collaboration between activists and scientists in all the projects. Funding for education and outreach came with mandates for cooperation between medical experts and consumers. Funding for the “Continuation of Follow-up of DES-Exposed Cohorts” required the inclusion of people exposed to DES on its steering committee. The DCN cofounder Susan Helmrich joined the team of investigators of the study to follow DES-associated clear cell cancer, ensuring scholarly collaboration between activists and scientists.40 The 1992 workshop was a watershed in DES science. The DES embodied health movement participated in the terrain of medicine and brought embodied knowledge into this setting as part of the discourse. Importantly, subjugated knowledges did not replace medical discourse but displaced or decentered it and made space for doing work differently. Disclaimers and apologies by the experts were acknowledgments of this displacement and also reminders that, as Phillippe reminded the workshop attendees, “we really cannot be anecdotal.”41 Personal anecdotal experience could not stand alone as an authority in DES science. When subjugated knowledges emerged, they

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could become productive, opening up space for further discussion and reflection. Boundaries between lay and expert knowledges and lay and expert individuals had already been breached in the past, and the workshop became a space for developing a future science of DES and identifying the material resources for enabling that science—from increasing the number of human subjects to developing a mechanism for identifying and making available human tissue specimens and for funding the research. Panelists introduced subjugated knowledges into their presentations and incorporated subjugated commentary into the flow of talk; laypeople and biomedical scientists stepped up to the microphone and talked about their personal experiences. They used subjugated knowledges as the basis for developing DES science. In all these ways, the 1992 workshop exemplified subjugated knowledges moving to the foreground in DES science. Since the 1970s, DES activists have been creating alliances with scientists to secure funding, to develop educational and research projects, and to pursue treatment. By the early 1990s, they had used their personal experiences of illness to judge the quality of DES science and had attempted to introduce their experiences into the design of research. They had also attempted to transform traditional assumptions about good and bad science and to blur or to redefine lines between experts and laypeople. They had, as I show in detail in Chapter 1, produced an embodied health movement. Their successful strategies, struggles, and continued dependence on biomedical science for diagnosis and treatment underlay their negotiations for, during, and after the 1992 DES Workshop. The analysis in this chapter shows how embodied health movements work and how the concept of “embodied health movement” captures the collective and politicized identities of DES activists. The example of the 1992 DES Workshop also contributes to the development of narrative theory and practice. Several narratives are at work here— of a scientific workshop building power and knowledge for future research and care, techno-scientists building careers, and funding agencies dispersing research funds; of the messiness and on-the-floor work of an embodied health movement, as people “dip in and out of dominant cultural scripts, manipulating and reformulating them” (Andrews 2002, 9) as power circulated from panel to audience; of speakers and organizers writing narratives to work out solutions to problems experienced by DES daughters; and of my story of DES stories and of seeing how narratives work in conference settings beyond this case.

6

K Healthy Baby Girls

T

Introduction

his chapter turns from an analysis of the narrative discourse in a scientific conference to an analysis of visual narratives. It simultaneously displays DES daughters’ accumulated knowledge and experiences of their bodies, reveals their participation in old and new regimes of DES, argues for a visual turn in narrative studies, and specifies how this visual turn intersects with and engages the genre of autobiographical documentary. It interprets three narratives in A Healthy Baby Girl, the autobiographical documentary film by DES daughter Judith Helfand (1996). A Healthy Baby Girl, like so much of DES activism, uses Helfand’s life story and her family’s emotions to make a private issue public and to encourage personal and civic reactions to the ironies, dangers, tragedies, and hopefulness that it reveals. These narratives show how DES stories circulate among and are connected with those of women’s health activism, endocrine disruptors, and embodied health movements.

A Healthy Baby Girl In 1990, Helfand was invited to work on a documentary film hopefully bound for public television about the impact of DES-related cancer. The feminist producers of the film insisted that anyone working on the project who was DES exposed had to get a thorough exam before they could start work on the project.1 When Helfand had her required exam, she was diag-

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nosed with clear cell cancer of the cervix. After her diagnosis, the producers advised her to quickly hire a product liability lawyer, which she did before undergoing surgery at Columbia Presbyterian Hospital. Surgeons removed her uterus, cervix, fallopian tubes, lymph nodes, and the top third of her vagina, leaving her ovaries and the rest of her vagina. Although Helfand began as a pro bono researcher on the film, she left the crew after her surgery for cancer. That film, which ultimately was turned into a segment for the PBS series Health Quarterly, was completed without Helfand’s presence, and she decided to tell her own story in A Healthy Baby Girl. For Helfand, putting together a film narrative was a way to knit together the split ends of time. As with many narratives of illness, the camera gave her critical distance, so she could reflect on pain, grief, and anger and produce experience and knowledge “in the telling and its reception” (Frank 1995, 22). Her fifty-seven-minute film was broadcast on PBS in 1997, a copresentation of the Point of View (POV) series and the Independent Television Service (ITVS).2 It won a Peabody Award as well as awards for the Best Documentary at the Sydney International Film Festival and the Atlanta Film and Video Festival. When A Healthy Baby Girl was screened at the Sundance Film Festival and other film festivals, Helfand invited local activists to talk about their work on toxic exposures, hoping to generate “‘unlikely alliances’ along class lines” as well as news stories about endocrine disruptors (see Chapter 1). These alliances might include a “hazardous material trainer from a plastics factory, a suburban DES mother, an activist from a working-class community, dealing with cancer clusters,” and so forth. That is, the unlikely alliances envisioned by Helfand are not necessarily only among DES daughters or other DES-exposed people but among people who are concerned about toxic exposures more generally. In keeping with this hope, the Web site for A Healthy Baby Girl directs visitors to Our Stolen Future (Colborn, Dumanoski, and Myers 1996–1997). By directing people to the key popular text introducing the concept of endocrine disruptors, Helfand sends the message that the struggles of a middle-class Jewish family in a Long Island suburb are “intimately related to those of agricultural workers using pesticides” and provides a framework for them to understand this intimacy more deeply than can be done simply by viewing A Healthy Baby Girl.3 Like many autobiographical documentaries, A Healthy Baby Girl is organized chronologically. The first scene in it is filmed from Judith’s point of view in 1990 (in a hospital where a nurse is administering IV medications just before Judith’s surgery for cancer), and the last scene is filmed in 1995 (on a beach where Judith and her mother celebrate the fifth anniversary of her surgery; in this scene, her mother is filming behind the camera). Judith employs other strategies of the discourse of autobiographical documentaries

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in her use of the camera, editing, and ways of addressing the audience (Renov 1999; Lane 2002; Anderson 2006). She puts herself into the film when she is behind the camera by showing herself (in shadows, in reflections in a subway window, and by being filmed while she films), by talking with the people she is filming, and by handing over the camera to her father, mother, and members of the two different film crews as the project changes. She uses voice-over narration, usually hers, retrospectively and while she is filming. Footage of everyday events in her life—filmed in diary form—is combined with observational footage of her parents, caregivers, attorney, DES activists, and the 1992 DES Workshop. She interweaves interviews with her mother, father, and former boyfriend with klezmer music and archival instructional films made during the 1940s and 1950s about the use of DES in cattle feed, the treatment of mice in scientific laboratories, and medical care for pregnant women. Judith uses family photographs (with captions), school pictures, yearbook photographs, group photographs from DES Cancer Network (DCN) annual meetings, and color drawings from her journal to juxtapose her personal narrative with those of other DES daughters, to make it accessible to a larger viewing public, and to set her (and her family’s) crisis of DES cancer in a political and social context. This form of self-conscious storytelling documents everyday life “to illustrate how the personal can be a site of social and political confluence” (Lane 2002, 88).4 A Healthy Baby Girl, ironically a monstrous offspring of another film project, displays a web of relations in place of a doctor-patient dyad: nurse practitioner, film crew, parents with negotiated practices of decision-making, and multiple social spaces. Helfand fuses autobiographical documentary practices of middle-class family life, klezmer music, lullabies, and Eastern European Jewish immigration with a critique of medical sovereignty, the post–World War II pharmaceutical industry, and regulatory agencies. Layered into the story are examples of techno-science imaging, the pharmaceuticalization of beef, endocrine disruptors, multistranded DES social movements, and medicalized motherhood that circulate back and forth in the film and beyond the film in its companion Web site to show and tell about power and knowledge in “old” and “new” regimes of DES cancer.

Judith’s First Narrative: A Healthy Baby Girl The first narrative in A Healthy Baby Girl connects Helfand’s personal experience of having cancer with DES as a public issue, describing a new regime of practices surrounding DES (Mills 1959). In it, Helfand interweaves music, voice, text, and images to move through time—telling a story backward, beginning with her surgery and ending with her cancer diagnosis, and then

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Figure 6.1. A Healthy Baby Girl

retelling it forward, beginning with her parents’ meeting, marrying, and having children; then progressing to Judith’s childhood; and ending with their shared receipt of the traumatic news that Judith has cancer and the recommendation that Judith’s mother should care for her while she recovers from the surgery (Figure 6.1). These temporal shifts combine with the first image of a nurse in slow motion, seen from below, to give a sense of unreality and drama to the story Judith is telling. That is, she not only shows and tells us about her experience but also takes us into her world and reconstructs a sensuous experience for us and in us (Radley 2002). To put it in terms of disease regimes, she interweaves institutionalized practices, authoritative discourses, social relations, collective identities, emotional vocabularies, visual images, public policies, and regulatory actions through which DES cancer has been socially constituted and experienced.5 The narrative begins with the sound of a flute and simultaneously in slow motion shows a slightly blurred image of a nurse, as seen from below. The nurse is holding a syringe in one hand and a small square gauze pad in the other; her dark short hair swings as she moves her head. Viewers hear Judith’s voice, first as they see the image of the nurse and then as they see the image of Judith’s torso, following surgery, a horizontal surgical incision taped up, gauze

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pads at either end of the taped incision. She is lying in a bed, her covers pushed aside to display her belly, her hands holding the sheets. Both of these images are repeated later in the film. Her voice says, “I’m the only one that remembers waking up from that surgery and feeling like they had taken something from me, and when I woke up from that surgery, my mother felt that they had given something back to her.” Judith continues, now sitting clothed, hunched over, looking straight at the camera, her palms together, in front of a fireplace, “and that’s where I guess our experiences kind of divide.” As she says “divide,” she separates her palms, gesturing outward and downward, not looking at the camera. She looks sideways and then at the camera, purses her lips, and swallows. Judith’s belly, taped up after surgery, its horizontal incision not quite covered with bandages, is the first image of her, a body part marked up after amputation. The first words in the film are Judith’s. The “something” referred to twice in this opening sentence is very complicated. At the very least, it means Judith can no longer give life because “it”—the capacity—has been taken from her. But her life has been saved, and in this respect her life has been given back to her and to her mother. The repetition of the words “they had taken something from me” and “they had given something back to her” as the first words in the film underscore their importance and encourage us to fill in the “they” and the “something” (and perhaps the “I” and “her”) as we achieve “locally situated knowledges” (Mishler 1999). That she follows this with a scene of herself clothed, sitting in front of a fireplace and gesturing, with the words, “and that’s where I guess our experiences kind of divide,” while looking straight at viewers and using her hands for emphasis, “thickens” (Radley 2002) the meaning she is communicating of the complicated relationship she has (and had) with her mother, of their gains and losses, of her aloneness and connection with her mother. Now the sound changes to a one-fingered piano rendition of a Yiddish lullaby, “Shluf, shluf, shluf” (“Sleep, Sleep, Sleep”), and the camera shows a computer screen with patient registration information for Judith Helfand.6 The bottom line of the computer screen is “Diagnosis: ? Cervical Ca.€.€.€.” The film turns to slow motion, and we see a man and Judith in a room with full-body-scan equipment. He is fully clothed, and she is dressed in a blue hospital gown. First they walk together, and then she moves forward alone toward the machine, climbs onto it, and lies on her back. He covers her with a red plaid blanket. Again, Judith narrates in a voice-over, “In 1963, when my mother was five weeks pregnant with me, her doctor prescribed the synthetic estrogen diethylstilbestrol, DES. Since the 1940s, pharmaceutical companies had been marketing DES as a wonder drug.” We see her face filling the screen as she continues, “My mother was told that it would prevent miscarriage and ensure a healthy baby.”

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Now a woman’s voice hums along with the piano, the camera moves, and first we see the radiology technician's face and then his hands typing, with green lights appearing on the console indicating the machine is “ready.” Judith is again on the screen, shot from above, lying on her back, her hands clasped above her head, her face barely visible between her arms and the red plaid blanket as she is slid into the machine. As she is moved into the machine, Judith’s narration begins again: “In 1971, eight years after my birth, the Food and Drug Administration banned the use of DES during pregnancy.” The camera moves from Judith to a screen, and we see an ultrasound image of her internal reproductive organs as she says, “Doctors identified a rare form of vaginal cancer in some young women exposed to DES in utero.” As she says this, we see the man’s right hand moving into view, his index finger pointing, moving back and forth across and then touching the center of the screen.7 The one-fingered lullaby evokes lullabies played and hummed by Judith’s mother and heard and felt by Judith. The music travels with Judith’s and her mother’s experiences beyond their individual lives and connects Judith and her mother to audiences’ experiences of humming, singing, and playing lullabies; and to hearing and feeling lullabies being sung. The music also locates them in the context of Jewish tradition and family life. All the music in the film is performed by the Klezmatics, a band that mixes Eastern European Jewish celebration (klezmer) sounds with a range of music traditions and antifundamentalist and social rights themes.8 These sounds and associations are sometimes foregrounded (as here) and sometimes backgrounded, sometimes traditional klezmer music and sometimes avant garde fusions. It is jarring, though, because the next scene, still accompanied by the lullaby, is of Judith lying on her back, sliding into a scanner surrounded by medical machinery. She is in another enclosure, as when she might have heard the lullaby in the womb. One enclosure (the scanner) is an image of danger or at least uncertainty, the other (the womb) of nurture. The only sign of the “outside” aside from the lullaby is the red plaid wool blanket covering her. This scene, the images and text on the screen, and the sounds call on us to fill in the “somethings” and the “divide” Judith referred to in the previous scene. Here, she starts to locate her experiences in a much larger context beyond that of Judaism to that of young, American, Jewish middle-class women who were born or bearing children during medicine’s golden age. She tells a story of the history of DES (which she fills in later in the film). The history deepens the irony of the diagnostic procedure imaged on the screen—of an ultrasound picturing Judith’s reproductive tract cancer caused by the DES prescribed so widely to pregnant women during the 1950s and 1960s to prevent reproductive failure and of the physician pointing out the location of iatrogenic disease.

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While he takes his hand away, the music stops, the camera lingers on the image, and we hear a man’s voice saying offscreen, “Your daughter has a clear cell cancer of the cervix. Discussing the pros and the cons of the two methods of treatment, I feel strongly that that surgery has many good things to offer you, because we really think that, that using a standard treatment, that she should, she should have a normal life.” As the doctor says this, a new scene appears on the screen. Judith’s parents are sitting side by side in the doctor’s office, dressed in white shirts and brown tweed jackets. Her mother clasps her hands in her lap. The camera moves, and a desk comes into view. Seated on the other side of the desk from Judith’s parents is a physician in a white coat. His glasses rest upside down on the desk, and his right arm and hand rest on the desk and hold a pencil. We see him in profile. He gestures with his right hand as he says, “that using a standard treatment she.€.€.€.” When the doctor says “normal life,” the camera is filled with Judith’s face, first in profile and then turning to look at the camera, her lips open, skeptical, stunned, shocked, as if commenting on the word “normal.” From Judith’s reproductive organs, the scene switches to Judith’s and her parents’ encounter with her doctor. They are brought together in his office, seated across from each other in a familiar middle-class doctor-patient setting, he on one side of a desk, Judith and her parents on the other. Full circle, this scene and the next end with Judith’s mother telling Judith, “I have to feel that I can give you the nurturing loving care that you need that I have to give you.” Ironically, it was the nurturing loving care, medically directed, that led them to this place at this time. Film critic Michael Renov, who calls this sort of project “domestic ethnography,” because it documents family members and others known intimately by the filmmaker, writes that the particularity of each instance (such as Judith’s relationship with her own parents) is countervailed by the familiarity of the dynamic displayed (such as the doctor-patient setting), thus engendering identification with the dynamic and with the particular characters and situation (1999, 145). The sound of more traditional klezmer clarinet music marks a transition. The screen is filled with a black-and-white still photograph of Judith’s parents taken long ago at their wedding, from a distance and then close up. They are in formal clothes. She is wearing a long white gown, and he is wearing a formal suit with a flower in his lapel. They are smiling. In a voice-over, Judith tells a story about their background, how they met and moved to the suburbs with her older brothers: “Both my parents grew up in Brownsville Brooklyn, first generation American Jews. They met and married after World War II. My mother miscarried with her third pregnancy, and that’s why she took DES. She was probably the typical DES mother,

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white, middle-class, and confident that she’d given me the best prenatal care that money could buy.” As she tells this story, a series of four more blackand-white family photographs fill the screen, one after the other, and then a family portrait in color of baby Judith, who is held by her mother, and her two brothers and father. Captions (in white typeface) are written onto each of the photographs.9 The camera returns to Judith’s mother in the doctor’s office, eyes huge, saying, “She’s gonna have surgery next week, a complete hysterectomy.” Her father comes onto the screen, his face filling the frame. Judith’s father says, “Inwardly we’re devastated to have a young girl of twenty-five facing a situation, excuse me.€.€.€.” He starts to cry, covers his face with his hand, wipes his nose, and exhales through his lips, loudly. On the screen is a school picture in color from grade school, first a closeup of Judith and two other girls, and then the camera pulls out so the whole class and teachers fill the screen. Simultaneously, Judith says in a voice-over, “I was eight years old when my parents first learned that DES could cause cancer. It turned out that Nassau County, Long Island, where we lived, had one of the highest rates of DES exposure in the country.” A close-up appears of Judith’s high school yearbook picture in black and white. The camera pulls out to reveal columns of portraits with text entries (“football” for example). Then the camera widens further, and two facing pages of high school yearbook pictures and text entries now appear. Simultaneously, Judith continues in a voice-over, “When I turned fourteen, my parents began to take me for annual DES exams. They were told that the odds were in my favor. Statistically, only one in one thousand DES daughters would develop clear cell cancer, and it was said to usually occur between fifteen and twenty-two.” While the two yearbook pages are still on the screen, a woman’s voice offscreen says, “And then your recovery period will probably be about six to eight weeks, you might wanna consider to comma [sic] home, let Mom take care of you.” After the word “consider,” Judith’s mother appears on the screen, seated, looking down as she hears this, and then Judith and the woman who spoke are seen. This woman, who has her arm across the back of a couch and sits right next to Judith, is Candy Tedeschi, a nurse practitioner who had been caring for DES daughters on Long Island at the DES Screening Center for many years. Both Judith and Candy are looking at Judith’s mother, Florence. Judith: is that what you want? Florence: mhm (Judith bows her head and starts to cry) couple weeks at least; I have to feel that I can give you the nurturing loving care that you need that I have to give you.

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The film cuts to a black-and-white photograph of Judith’s mother holding baby Judith up with both her hands, smiling at the camera; the words “A Healthy Baby Girl” appear on the photograph (Figure 6.1). The screen goes dark, and the first narrative ends. The photographs of Judith’s parents, and the story Judith tells along with them, link the gendered cultural narrative of a seamless progression from courtship to marriage, pregnancy, and the birth of healthy babies imagined by her parents when they met and married to Judith’s own imagined future. The photographs also associate her parents’ lives with the lives of middleclass Americans who came of age in her parents’ generation. Footage from this same era—of women and babies sitting on a row of chairs in a waiting room—shown later in the film supports the connection between Judith’s mother’s willingness to take DES to prevent a second miscarriage and the public issue of medicine’s sovereignty during an old regime of practice. The institutionalized practices of medicalized pregnancy legitimated DES as a practice of intensive mothering (“nurturing loving care”) during the 1950s and 1960s. At the same time, the use of school pictures connects Judith’s experiences to those of other grade-schoolers and high school students. These are conventional portraits in American public schools, taken annually from the time a child begins kindergarten until she or he graduates from high school. Judith and her parents simultaneously experience the news of her cancer deeply personally and, at the same time, in particular national, ethnic, religious, and class social locations. The music highlights Jewish tradition, religion, and family life in Judith’s experience. When the lullaby is played or hummed, it evokes a tradition of connection and nurturing. Depending on the visual images appearing on the screen, this nurturing is between Jewish mothers and babies, between baby Judith and her mother, between Judith and the babies she mourns, and between adult Judith after surgery and her mother. The use of slow motion at the start of the film and later during Judith’s diagnosis conveys a sense of unreality to the experience and an interruption to the flow of everyday life. In this respect, the film’s effects come from disrupting familiar cultural discourses. This adult woman is joined by her mother and father when she visits the doctor’s office instead of going for care by herself. And her father—not her mother—“breaks down.” Here, the film shocks. The first narrative of the film increases public knowledge and awareness about DES. Most simply, it provides a history of DES, located in the context of mid- and late-twentieth-century American medicine and culture, moving between old and new regimes of practices in the course of telling this story. It draws upon culturally shared images and conventions to present and in-

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terpret experience and to draw connections between individuals and society (Hydén 1997; Mattingly and Garro 1994).10 Familiar images and icons of an expected cultural narrative—happy baby pictures with Judith’s mother and her family and school photos—are disrupted in haphazard, irregular fashion by images of cancer-patient Judith during, before, and after her surgery. Judith is visible in family album photographs of her infancy and the yearbook photographs of her adolescence, in videotapes following her into medical settings before and after her surgery for cancer, and while speaking directly to the camera. The “family album” is already disrupted by the opening pictures showing and words telling about her surgery for reproductive tract cancer.11 In the first narrative, the irony, contradictions, blurred time, repetitions, music, and still photographs—everyday, archival footage from then and now— all combine to undermine easy or simplistic answers about the meaning of DES for “patients” and about ways to address and transform medical care more generally even as they draw audiences into Judith’s narrative. On the film’s Web site, Helfand encourages people to ask, “What is the Healthy Baby Girl story in your community?”12

Judith’s Second Narrative: Eggs A Healthy Baby Girl aims to educate, to make connections with, and to call to action individuals affected by DES through the film as well as beyond it. DES knowledge circulates and is accessible to individuals in multiple locations and times through the companion Web site, as it also does through “Letters to the Editor” published in the DES Action Voice. A new regime of practices is visible in the postings on the Web site by DES sons and daughters, the list of resources, and the community action guide. Notably, the network of practices in A Healthy Baby Girl includes “a much larger story in American society of widespread exposure to inadequately tested synthetic chemicals,” some “with the potential to disrupt our endocrine systems,” just like DES.13 The second narrative begins with the sound of hand mixing or beating followed by the appearance on the screen of four white eggs, lying together (almost as if they were in a nest) on a white dish towel with blue borders, on a countertop (Figure 6.2).14 The camera pulls out to show Judith’s mother Florence standing in front of a kitchen counter, pouring from a yellow mixing bowl. This is Judith’s parents’ kitchen, in the house where Judith grew up and later came home to recover from her surgery for cancer. Their kitchen is by now a familiar place in the film. Judith is filming. She participates in the exchange from behind the camera. During this narrative, the sounds and sights of food-making continue.

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Figure 6.2. Eggs

Judith: (offscreen) talking about eggs Florence: Yes? (Judith’s mother Florence is standing at the counter, pouring out the beaten eggs, holding a wire whisk while she pours; Judith’s father Ted, visible in the background, moves out of the picture to the left) J: Daddy told me you’d been trying to figure out how you could salvage my eggs? (meanwhile, on-screen, Ted takes two glasses out of a cabinet over the counter and smiles; Florence puts the bowl and whisk in the sink, with her back to the camera) F: Your eggs? (stops, turns, and looks at the camera; puts her right hand, partly clenched as if it is wet, up to her eyebrow and rubs; and then looks down and continues cooking) J: On the telephone the other day F: Ohh (laughs) no, I said if I was younger (pauses; Florence, who continues cooking, is framed as if she were in a portrait, with her face, head, and shoulders visible and with her hands, though they are not shown on-screen, clearly busy; Ted is no longer visible) J: Yeah? F: (stirring with a wooden spoon) We could salvage your eggs, and they’d be, um, they’d be fertilized in a dish, in a Petri dish (laughs and looks up at the camera), and if it was successful, then you could plant them in my womb, but I don’t got one—so—(looks down; looks up) I’m sorry I can’t do it for you (laughs and then looks

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down;15 stops and looks at the camera and starts to use her hands for emphasis); it’s been done; there was a mother who did it for her daughter; see that way, you know that the mother’s not going to say, or the host, the person bearing the child, is not going to say, “it’s mine” (performs the word by pressings her hand flat against her chest) some day J: My eggs—might have DES in them (Florence starts stirring again; looks down) F: That was something Daddy brought up Ted: (sitting at the table facing the camera, he shakes his head slightly and brings a spoon with oatmeal to his lips) Could be the worst step one might want to take, not the best J: Why would we wanna play with all of this technology after everything? (Florence is seated at the table, eating her eggs with a fork) T: (on-screen) It may backfire, and then what do you do? (the camera is now at table level) J: Just so I can have a blood child F: That would that would be the only reason that you would look into something like that (the camera lingers, there is no sound, and the second narrative ends with a long shot of Florence sitting in her chair, looking straight at the camera and then down) Cheryl Mattingly and Linda Garro (1994, 771) write of narrative’s “capacity to describe a world through the evocation of sensory images, to interweave even contradictory pictures and symbols and thus offer contradictory explanations in the very same story.” The exchange between Judith and her parents is upbeat, probably because it begins with the sound of a whisk briskly beating eggs. The four white eggs, nestled on a white and blue dish towel, give Judith an easy entry to a difficult topic. Judith’s body still produces eggs, but she cannot become pregnant. Judith’s mother chuckles when Judith pushes her to talk about her fantasy, which is based on insider knowledge of infertility. Medical technology has made it possible for one woman to carry another woman’s fertilized egg. More than that, Florence knows of a woman who carried a pregnancy for her infertile daughter. In their brief exchange, Judith and her parents attest to the irony of the situation: Judith’s eggs were also exposed to DES before her birth and may have DES in them. Simultaneously, Judith’s mother does not have a uterus. This exchange evokes the insidious ways in which medicine has transformed the lives and bodies of Judith and her mother and the uncertainty in treating problems associated with DES. Their language mixes genetics,

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reproductive science, and gardening (Clarke et al. 2003). They have adopted medical categories for talking about becoming a mother by using such words as “host” and “Petri dish” in the effort to achieve a “blood child.” Judith and her mother contest the assumption of medical solutions to the “problem” of infertility, in contrast to the dominant narratives of becoming mothers after DES (see Chapter 3). Still accepting the mothering frame, the “eggs” narrative draws attention to the ways in which DES is incorporated into the bodies of DES daughters, so that even if conception, pregnancy, and birth are possible, they may not be preferable ways of becoming mothers: “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” (Inhorn 2006, 354). In the second narrative, Judith’s mother collapses the distance and differentiation between them by telling Judith her fantasy about carrying her eggs. This contrasts with the first narrative, when Judith says that the reaction of her mother and her to her cancer divides them. The second narrative also connects humans and animals through the human and chicken eggs. Much of the early DES science about safety concerned how results of animal studies applied to the effects of DES on humans. More recently in endocrine disruptor science, the study of the reproductive and developmental effects of estrogens and estrogen-like substances on wildlife has been illuminated by DES (see Chapter 1; Bell 1995). The imagery in the eggs narrative is one indication of the complex webs of power and knowledge through which DES circulates in the DES embodied health movement. Judith’s linking of human and animal eggs in her imagery leads us to the endocrine disruptor hypothesis and suggests unpacking its history. Scientists whose studies coalesced into the endocrine disruptor hypothesis worked locally in different research programs: DES science, field and laboratory studies linking wildlife reproductive disorders to chemical waste and pesticides, and research indicating a global decline in the quality and quantity of human sperm. Many of these scientists were marginalized, because they stretched and crossed “the boundaries of disciplines such as endocrinology, developmental biology, and toxicology without fitting neatly” into any of them (Krimsky 2000, 13). A watershed conference in 1991 brought these local programs together in a detailed formulation of the endocrine disruptor hypothesis and produced a unified thematic focus for the diverse research (Krimsky 2000). The conference, known as “Wingspread” or the “Wingspread Work Session,” brought together the most diverse representation of scientific fields that had ever been convened on the subject of endocrine disruptors and produced “The Wingspread Consensus Statement,” signed by twenty-one scientists (Krimsky 2000, 25–27).16 The

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consensus statement introduced the term “endocrine disruptor” and the endocrine disruptor hypothesis (Krimsky 2000; Colborn, Dumanoski, and Myers 1996–1997). The 1991 Wingspread Conference was the first in a series of meetings organized by Theo Colborn, a pharmacist who had filled DES prescriptions for pregnant women as early as 1947.17 As a testament to the links she made between DES and estrogen disruptors, and DES activists and (outsider) scientists, Colborn wrote the Foreword to the book DES Stories (edited by DES activist Margaret Lee Braun), a compilation of portraits of DES daughters, mothers, sons, fathers, and grandchildren who chose to show their faces and share their stories “to make DES visible” and to step “out of the shadows by speaking from the heart” (Braun 2001, xxi). Colborn wrote that DES “is a model of the chemical revolution’s technological experiment—capable of changing the character of human societies and challenging the resilience of life on Earth. DES is a wake-up call to turn back the thoughtless dusting of the globe with untested chemicals to which most people do not know they are exposed” (Colborn 2001, x). The Foreword calls attention to the need for caution and thoughtful testing before releasing chemicals into human use and animal environments. Without naming it, Colborn employs the “Precautionary Principle,” a tenet of environmental protection policy that asserts that precautionary measures should be taken “when an activity raises threats of harm to human health or the environment€.€.€. even if some cause and effect relationships are not fully established scientifically.”18 Colborn was less visible in regimes of DES practice but was a central participant in the development of the endocrine disruptor hypothesis. A “generalist and synthesizer,” Colborn moved from “outsider-scientist” to “a respected and sought-after authority, a consensus builder€.€.€. and standardbearer of the environmental endocrine hypothesis” (Krimsky 2000, 16). In 1992, she participated in the audience at the DES workshop and, in comments from the floor, referred to the forthcoming collection of articles based on the 1991 Wingspread Conference that she coedited.19 The series of Wingspread Work Sessions constituted another arena in which people and ideas moved between the DES and endocrine disruptor regimes of practice.20 In 1992, DES activists were invited to attend one of the Wingspread sessions, because “the effects of DES on humans provides [sic] clues to the effects of other estrogenic substances which are now harming wildlife.”21 Their participation in “Estrogen Disruptors in the Environment” exemplifies webs of power and knowledge through which DES circulates. The multivalent eggs narrative in Helfand’s parents’ kitchen shows and tells how DES stories circulate and are connected with those of endocrine

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disruptors. It identifies new subjectivities that arise through techno-scientific means, such as mothers carrying daughters’ fertilized eggs, and points to the damaging effects on eggs of prenatal exposure to endocrine disruptors such as DES, thereby joining humans and animals and caution in biomedicine with that in environmental science. The narrative moves from a family’s kitchen backward and forward to join the possibility of becoming a mother after DES with the “resilience of life on Earth” (Colborn 2001, x).

Judith’s Third Narrative: “Dear President Bush” The third story interweaves DES as a personal trouble with DES as a public issue and gives attention to gendered power—that is, the effects of women’s health activism on public discourse and social practices. The story opens with peppy accordion music, soon joined by a clarinet. Judith’s mother in voiceover says the words “Dear President Bush” while on-screen she is standing in front of a dining room table and holding a white tablecloth, about to cover the dining room table.22 Florence continues to speak, and the camera—shot from below, looking up close at her—shows her sitting in an easy chair, reading from a typewritten letter, or rather two letters, one on top of the other (Figure 6.3). At first, she is holding the letter in her lap with her left hand; as she reads it, she lifts the letter up to her face and holds it with both hands. The letter is the largest object on the screen, and it is in the center of the screen. Footage of Florence reading alternates with footage of Florence lightFigure 6.3. Florence Helfand reading her letter to President Bush

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ing candles on a cake and Judith blowing out the candles on a cake marking the third anniversary of her surgery for cancer. Florence: Dear President Bush, as a DES-exposed mother I’m delighted that the DES Education and Research Amendment HR4178 was passed by the Senate on September 30th.23 (Florence continues reading the letter offscreen, while on-screen she stands at her kitchen table in different clothes, placing four candles onto a cake and lighting them; beside the cake is a stack of four or five white dessert plates and forks) The DES Bill is extremely important to me. I have a beautiful daughter, age twenty-eight. At twenty-five, she was diagnosed with clear cell adenocarcinoma of the cervix. (Florence finishes lighting the candles as she says the word “cervix”)

Figure 6.4. Florence Helfand reading Ted Helfand’s letter to President Bush

The film returns to the opening scene in the third story, where Florence sits in the chair. As she reads, she puts one of the letters behind the other, looks at Judith, and says, “Then I decided to write a letter for Dad” (Figure 6.4). The camera now shows Judith, leaning over the cake, her bare arms crossed and resting on the table, smiling at the camera. The angle of the camera is level with Judith. She is relaxed, smiling, and happy. She laughs and looks down at the cake. As Judith laughs silently, her mother’s voice is heard off camera:

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Florence: To save her life she had to undergo a radical hysterectomy— and a partial restoration of the vagina. Judith: (on-screen, Judith blows out the candles on the cake while her voice is heard offscreen) Daddy said vagina to President Bush? F: Yeah (she laughs and, still holding the letter, she looks at the camera chuckling, her whole face in the frame, and then raises the letter up against her face, hiding all but her eyes) J: (the accordion and clarinet music continue until the story’s conclusion, when Judith, in a voice-over, narrates the ending) As one of his last acts in office, President Bush signed the DES Research and Education Bill into law; my mother’s letter from Merrick, Long Island, was one of hundreds (footage of five women from the DCN, including Judith, is shown on-screen; it is a sunny day, and, as the story ends, they are walking toward the Capitol Building, apparently about to get into a car) The Helfands’ letters were among hundreds sent to President George H. W. Bush in 1992 about this legislation and exemplify one strategy of the DES embodied health movement. In previous chapters, I show other examples of how the DES embodied health movement works—forming alliances with biomedical scientists, gaining a place at the table, undoing science as usual, forming organizations and newsletters to support and educate people exposed to DES—whereas here, the example is an orchestrated letter-writing campaign. By sending letters to public officials (senators, representatives, and the president), Florence and Ted Helfand participated in a campaign organized by DES Action to sway political opinion and to successfully achieve passage of federal legislation.24 They were part of the virtual community produced by the “Letters to the Editor” of the DES Action Voice (see Chapter 3), which could be called upon to participate in letter-writing campaigns to influence legislation and to change social practices. This strategy is consistent with that of other grassroots women’s health groups, which—despite critique of biomedicalization and the medicalization of women’s health—have “largely supported greater federal funding of biomedical research into women’s health” and collaboration with biomedical scientists (Ruzek and Becker 1999, 6). The 1992 federal DES legislation was passed into law, and federal funding was provided for DES educational and outreach projects, clinical follow-up studies, and experimental research. The federal funding required collaboration between activists and scientists in all the projects (see Chapter 5). The “Dear President Bush” narrative interweaves scenes of a family birthday party with images of letters about federal legislation. With this structure

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of alternating scenes, it calls into question the distinction between public and private, echoing a central tenet of women’s health activism that “the personal is the political.” In addition, the narrative is about using a personal story to exert pressure on a public official. The letters read by Florence tell a story of Judith’s DES-induced cancer in order to convince President Bush to sign DES legislation. Telling personal stories about DES is a familiar practice among DES activists, in their “Letters to the Editor” in DES Action Voice within the community and in letters to public officials outside the community. The “cake” footage is blurry and seems more amateurish than the “letter” footage. The difference between the way the two scenes are shot contributes to the meaning being constructed in the story of a mother who has become a more focused political actor. She has connected her personal experience of having a daughter who has lived another year after having DES cancer to the public issue of DES legislation. She is a woman transformed from someone who bakes and lights candles on a cake in the kitchen to someone who writes a letter to the president of the United States. The narrative also uses words of sexuality and the body to expose “shameful female privates” (Kapsalis 1997) and to engage in a play of power and knowledge. The letters show and tell that Florence (and Judith and Ted) have become bearers of knowledge about the clinical contours of DES through Judith’s embodied experience. The emphasis in this narrative is less the fusion of DES with hormones in Florence’s body when she was pregnant with Judith than it is gendered transgression (see Chapter 4). Florence uses the word “cervix” in her letter. Ted’s letter uses the word “vagina” and the phrase “partial restoration of the vagina.” These words are associated with the women’s health movement and continue a feminist practice of speaking, making public, and normalizing women’s bodies. But Judith’s mother speaks not only for herself in her letter to President Bush. She also speaks for her husband Ted. The humorous exchange between Judith and Florence about the word “vagina” calls attention to women’s exclusion from public discourse about weighty and cherished topics in “quasisacred institutional space” and simultaneously stakes their claim in it (Baxter 2006, 8). In light of Judith’s identification of the class- and race-based distribution of DES during pregnancy (her mother “was probably the typical DES mother, white, middle-class, and confident that she’d given me the best prenatal care that money could buy”), the exchange between Judith and her mother may also indicate a “lack of political decorum” and call attention to the class as well as gendered dimensions of citizenship and participation in civic culture (Hertz and Reverby 1995, 609–610). This exchange is between

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women, performing an imagined exchange between two men. The words are written and spoken by Florence, and they are seen and heard by Judith. Florence speaks “as” and on behalf of Ted, advocating federal legislation, and Judith listens “as if” she were President Bush, subverting the man-to-man communication between Ted and President Bush and simultaneously seizing this public space, a practice reminiscent of the pelvic exam “performed” by Esther, who “teased” her physician and talked back and acted like one of the guys (physicians at a teaching hospital; see Chapter 4). The tone may be jocular, but the story is about gendered power and the effects of women’s health activism on public discourse and social practices. The third narrative interweaves scenes of a family birthday party with scenes of Florence reading two different letters that she has written to the president of the United States as part of a letter-writing campaign. The birthday party is a familiar scene, one that includes lighting and blowing out candles on a cake, but the date being celebrated is the third anniversary of Judith’s surgery for cancer. This juxtaposition is signaled by the number of candles on the cake and the words in Florence’s letter (“I have a beautiful daughter, age twenty-eight. At twenty-five€.€.€.”) that she speaks off camera. Showing and telling about Judith’s surgery recalls Judith’s words and the images at the start of the film (“when I woke up from that surgery, my mother felt that they had given something back to her, and that’s where I guess our experiences kind of divide”). The birthday scene “performs” what Judith tells us her mother felt—that Judith had been given back to her by the surgery. But it does more than this. By showing the letters to President Bush, the third narrative also shows that the experiences of Judith and her mother have converged in their joint efforts to make DES a public issue. A Healthy Baby Girl shows and tells how DES and endocrine disruptors overlap, providing an early documentation of these regimes of practice. Its focus on DES cancer through the everyday lives of a daughter and her parents illustrates how their personal lives can be sites of social and political action. The klezmer music, family photographs, archival film, newspaper clippings, and conventions of filmmaking connect the locally situated experiences of Helfand with global networks of power and knowledge. As autobiographical documentary, A Healthy Baby Girl transforms the everyday life of Helfand into multilayered narratives that echo themes and perspectives in the interviews, letters to the editor, and the 1992 DES Workshop about living with DES cancer, remapping bodies, and becoming or not becoming a mother. The film’s display of and resistance to the cultural imperative of becoming a mother engages with other counternarratives circulating in the DES Ac-

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tion Voice and in feminist scholarship beyond DES. A Healthy Baby Girl also documents the locally situated experiences of the biomedicalization process and outcome. DES daughters are the outcome of previous medicalization through their mothers and then are also part of the process, negotiation, and identity themselves. Their lived experience is personally felt and socially located through the DES embodied health movement.

Conclusion Performing DES, Embodying a Health Movement

T

his final chapter reconsiders how narrative, circulation, embodied knowledges, and experience with DES as developed in this book offer a language and way of thinking about how and why embodied health movements “get made” and “work.” I begin with the celebration of the thirtieth anniversary of DES Action on September 20, 2008. This was the first big celebration in New York City, where much of the early planning for DES Action occurred in the 1970s. Announcements of the event were circulated in the DES Action Voice, on the DES Action Web site, and in invitations sent through the mail.1 Sponsored by four attorneys who had represented DES daughters, mothers, and sons as plaintiffs in hundreds of lawsuits over the years, the evening was simultaneously a fund-raising effort, a celebration of the accomplishments of DES Action, and an affirmation that the organization “would be around as long as needed.”2 Eight honorees were listed in the invitation, and I looked forward to meeting up with them again.3 I sent in my registration/contribution for the event and found cheap airline tickets and a free place to spend the night. Two supporters of DES Action had made it possible to hold the event in the Commissioner’s Room at the New York City Fire Museum. When I arrived at the museum, opened the door, and walked inside, I passed by a souvenir shop, an antique fire engine, yellow hoses, and other fire-related art and artifacts, and then I made my way to a large industrial elevator for the ride to the third floor, where a crowd of about one hundred people stood

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about talking, eating appetizers, and drinking. Copies of Pat Cody’s recently published memoir DES Voices: From Anger to Action (2008) were available for purchase at the registration desk. Seating was available at small tables, rows of chairs were set up in front of a podium, and in one corner of the room stood band equipment and a microphone. Halfway through the evening, we were brought together for an awards ceremony and a “lighthearted performance” written by DES daughter Patti Negri, president of the DES Action Board of Directors.4 In my anticipation of the event, I had conjured up a celebration of DES that would include DES daughters I had known or interviewed over the years, clinicians, and scientists. In other words, I had imagined a scene that would be an extension of the DES embodied health movement world I had seen at the DES workshops (1992, 1999) and that lives on in the National Cancer Institute’s DES Follow-up Study. The reality was more complicated. First, the audience was varied, but not in quite the way I had imagined. Most of the attendees were DES mothers, daughters, granddaughters, and families, and of the DES daughters in attendance, almost none had had cancer. I could identify no physicians, and there were only a few biomedical scientists, such as Candy Tedeschi, a nurse practitioner and a member of the Board of Directors of DES Action. Tedeschi was being honored for volunteering her time and talent to DES Action, for coordinating the DES Screening Center at Long Island Jewish Medical Center (1981–1999), and for giving “countless speaking engagements, teaching opportunities, media interviews, service on numerous professional committees, as well as contributions to books and professional publications.”5 Judith Helfand was there, as were some of the other DES activists I anticipated seeing, but others were not. The four attorneys who sponsored the celebration were all in attendance. Tributes to two of them—Sybil Shainwald and Aaron Levine—for their pioneering work in the representation of DES daughters in lawsuits had recently appeared in DES Action Voice.6 DES sons’ accomplishments were featured in the performance and the awards. The presence of attorneys and the celebration of DES sons made their participation in the DES embodied health movement visible in a way that this book—because of its emphasis on the medicine-science-andDES knowledge networks of power—has not. My decision to focus on DES daughters and to understand this embodied health movement through their stories reflects my interest in women’s health.7 Second, the discourse was narrower than I had anticipated. In the commendations and entertainment, there were references to lifelong reliance on medical care and the consequences of this (“pap smears, the worry, the money, the docs€.€.€. and the insurance guy€.€.€. [and] the fear of all those test results”).8 In addition, the origins, goals, and accomplishments of DES

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Action were listed (advocacy for research, education, and legislation) and the necessity for continuing vigilance against “big pharma” and physicians insufficiently knowledgeable or caring about their patients. “Endocrine disruptor” and “missing fertility” were in the script, but not the words “cancer” or “the DES Cancer Network” (DCN). DES Action has consistently centered advocacy, the worries and expenses associated with lifelong screenings, and a critique of “big pharma,” including successful litigation against drug companies manufacturing DES. It has decentered cancer and its recurrences, a strategy that encouraged DES cancer daughters to develop a different strand in the network. The presences and absences in the discourse locate DES Action in the DES embodied health movement. This book emphasizes the overlaps in the contributions of DES Action and the DCN to the embodied health movement and de-emphasizes their divergences, an emphasis that risks the romanticism of coherence and wholeness that was confronted by the discourse of the thirtieth anniversary. The performance was a key part of the evening’s program. It was written, directed, and narrated by Negri, a professional actress, whose interactive theater company, Brain Brew Entertainment, performed a personalized “professional mini-production telling DES Action’s role in the DES story.” Negri was joined in the mini-production by two professional actresses from the Brain Brew company and assisted by members of the audience who were called up by Negri and given instructions on the spot. The two actresses changed costumes from a coat rack at the side of the stage area. The audience laughed, applauded, and relished the insider jokes; and the individuals asked to stand up and act in it accepted the invitation with good humor. In her introduction to the mini-production, Negri confessed that this had been a difficult show for her to write and to perform because of her personal investment in it. The performance was based on three classic Hollywood film genres—the historical epic, the spaghetti western, and the horror film—each performed as a musical that substituted DES-based lyrics for the original. In the historical epic that recalled Cecil B. DeMille and Charlton Heston in a DES version of The Ten Commandments, Moses was played by Mike Freilick, a DES son who founded the DES Sons Network, who is a member of the DES Action Board of Directors, and who was being honored at the event. From this epic, in which Freilick/Moses received ten commandments about DES that included “thou shalt never accept funding from drug companies” (with applause from the audience); to the spaghetti western, in which the “Town of DES Actionville” stood up to “Eli Lilly and the Big Pharma Gang”; and to the horror film, in which there was a search for a good doctor in a “dark, dank dungeon laboratory on a dark and rainy night,” with Tedeschi (playing herself) as the

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model for cloning “the perfect doctor,” Brain Brew Entertainment celebrated DES Action; its educational, legal, and legislative successes; and its support for people exposed to DES. These classic Hollywood film forms provided a narrative structure that simultaneously suggested living with DES is a drama with multiple plots (“a big, twisty murder mystery” or “a big, silly comedic farce€.€.€. or a melodrama€.€.€. often a tear jerker”) and that DES yields identifiable heroes and villains and a story with clear beginnings, middles, and endings. The narrative structure limited the stories that could be told about DES in the entertainment. And yet, other more complex discourses haunted this performance and the anniversary party. Brain Brew Entertainment’s performance focused attention on one strand of the DES embodied health movement network, poking fun and highlighting as well as pointing out and holding up as reminders some events and circumstances of central concern to DES daughters. These ranged from worries, dependence on medicine, and reliance on biomedical science for continuing research about the effects of endocrine disruptors on people and environments to the need for vigilance against the harmful practices of pharmaceutical companies. By centering attorneys in the celebration and a DES son in the performance and awards ceremony, “Celebrating 30 Years of Action” also created an audience that was varied in ways I had not anticipated but that was often visible in the history of DES Action and the DES embodied health movement (Braun 2001; Cody 2008). Two DES cancer daughters—Helfand and Joyce Bichler—whose book (Bichler 1981) and film (Helfand 1996) are known, respected, and circulated by DES Action were also present at this celebration. Their attorneys, Levine and Shainwald, respectively, stood alongside them during the performance and caught up with them afterward. DES daughter Caitlin McCarthy, who more recently entered the embodied health movement, was also in attendance. McCarthy’s feature film screenplay about DES, Wonder Drug, is currently making the rounds of film festivals (McCarthy 2008).9 These presences suggest a richer and more complex story of DES than the dominant versions told at the celebration, one that is more open ended and tangled than what I conjured up in my anticipation of this event. “Celebrating 30 Years of Action” focused attention on the accomplishments of DES Action. Its location in a museum signaled the need to memorialize and preserve its history even as it provided a note of warning about the dangers of either romanticizing or fixing DES. The DES embodied health movement has participated in the transformation of science, knowledge, laws, policies, and power, with strategies emanating from multiple locations. Some of these transformations and participant groups and individuals were identifiable and highlighted at the celebration, whereas others were not, reminders of

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the ways in which new regimes of power work. This book provides a language and a way of thinking that can anticipate and make sense of complexities and ambivalences that inevitably result from putting together bits and pieces of what is at hand to create new knowledges, institutions, and practices in embodied health movements. Further, I have demonstrated why we need a multidimensional narrative approach to understand how knowledge production occurs, how regimes of practice work, and how embodied health movements emerge and develop. This book traces DES daughters’ stories from the 1970s to the present, in and out of newsletters, doctors’ offices and hospitals, a scientific workshop, a film, and a celebration of the first thirty years of DES Action, to create new spaces and conversations in old and new regimes of practice for medical care. Attending to the ways in which narratives work in different locations, singly and multiply, spoken and written, in film and performance, reveals the subtle ways in which dominant discourses are woven into DES daughters’ experiences of cancer, pregnancy and mothering, and sexuality, as well as subtle resistances to them—in counterdiscourses. Thus, “narrative” is a key theme in this book. I begin with a focus on interviews—the most common source of evidence for narrative scholars—as a site for understanding the politics of knowing. The book extends and deepens the narrative turn in the social sciences by interpreting the production of multiple narratives in multiple locations. It ends with brief summaries of My Virginia (Chapter 5) and “DES Action Thirtieth Anniversary” (Conclusion) that frame a detailed analysis of the autobiographical documentary A Healthy Baby Girl. With this turn, the book concludes by moving beyond text to analyze a narrative that intentionally and self-reflexively brings together onscreen and offscreen narration, music, and different types of images (family and yearbook photos, home movies, educational films, and drawings). In their continuing need to depend on scientific understandings and innovations for long-term screening and treatment, DES daughters enter into and participate in different regimes of practice, see a variety of practitioners, and undergo a range of treatments. These recurrent and diverse encounters with continuously changing practices and practitioners reshape the DES daughters’ subjectivities with biomedically informed changes in their understandings and experiences of their bodies. At the same time, their dependency and strategic interventions produce knowledge, habits, and discourses that contribute to constant modifications and continual shifts in regimes of science. “Circulation” is another major theme in the book, drawing from Michel Foucault’s argument, first, that power is exercised from multiple points. Second, knowledge and decisions about the clinical contours of disease and

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public discourses emanate from local and unstable points. Third, the concepts of “webs,” “mobility,” and “convergence” are useful for understanding the emergence and development of the DES embodied health movement. Although there are occasionally “radical ruptures” or “massive binary divisions,” power and resistance typically are spread out irregularly over time and space (Foucault 1978, 96). In the DES embodied health movement, points of convergence can be identified from the 1970s to the 2000s, such as movement of subjugated knowledges from different locations (on panels, from the floor during questions and answers, off the workshop floor) by activists, scientists, and physicians to the center of the 1992 DES Workshop to undo science as usual. More often, the exercise of power occurred locally, in physicians’ offices and clinics, hospitals, and homes—for example, during a pelvic exam, when a woman patient (Esther, Chapter 4) “teased” her physician; or when a woman (Stacey, Chapter 3) who finally gave birth to a healthy baby girl wrote a “Letter to the Editor” of DES Action Voice, celebrating her triumph; or when a woman (Deborah, Chapter 2) turned to DES Action for help and advice after her diagnosis of cancer. Furthermore, the effects of exercising power were uneven and local. There were “pushbacks” and ambivalences as well as acceptances of biomedicalization (Clarke et al. 2009). For example, Stacey’s letter is infused with cultural assumptions about a linear path to becoming a mother in a deeply medicalized process. The letter writer drew from available cultural discourses, and her letter converged with others written to the same newsletter to reproduce a dominant gendered discourse of perseverance and biological parenthood. By contrast, Esther’s teasing displayed a woman’s gendered knowledge of her body employed as a resource in a play of power in relation to a gynecology teaching session at an elite hospital, and she drew from available cultural resources to put together a “pelvic exam” from her embodied experiences of DES cancer. The pelvic exam practiced in this local setting converged with other pelvic exams and vagina talk among and beyond DES daughters— including a letter-writing campaign advocating passage of DES legislation (Chapter 6), and thousands of performances worldwide of The Vagina Monologues (Ensler 2001) to end violence against women and girls—and created space for talk and work about vaginas in mobile and transitory webs of power and knowledge. In these examples, DES daughters circulate among systems of medical surveillance, and ideas about perseverance, biological parenthood, and shame (among other things) circulate among people who are dispersed across time, space, and relationships to DES. Accordingly, power does not emanate from a central point and does not work by “consolidating everything under its invincible unity” (Foucault 1978, 93). More static, top-down, bina-

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ry models of power cannot adequately capture these sorts of power relationships that are produced “from one moment to the next” from innumerable positions (Foucault 1978, 93). “Embodied knowledges” are key to understanding DES as an embodied health movement, and the development of this concept is a major contribution of this book. As I demonstrate, beginning in the 1960s, the risks and damaging consequences to their reproductive tracts sent DES daughters on unanticipated journeys through medical practices that could not adequately address DES-related reproductive tract cancer, infertility, and uncertain health effects. DES daughters’ lived experiences of hybridity, fusing organic and pharmaceutical substances before and after their births, as shown in interviews, letters, workshop talk, and film, reveal a complicated and iterative process that produced new bodies, identities, practices, and knowledges. The place of experience as a source of knowledge has been a persistent theme in feminist scholarship (Haraway 1988; Scott 1991; Murphy 2004; Davis 2007). Lumping together DES daughters as I have done risks effacing the diversity of subjectivities produced by DES, from its effects on their bodies to the local circumstances from which they could draw to the ways they wove dominant discourses into their accounts (adapting to, resisting, and sometime reaching beyond those discourses). But DES daughters are identifiable subjects who, from multiple locations, unevenly, and over several decades, created a different kind of social movement, one that actively contributed to the development of transformed relationships of power and knowledge not only in care for DES daughters but also in the politics of women’s health and environmental activism more generally. Their embodied knowledges do not rest on an “authentic” or “essential” female or DES experience, but, at the same time, their narratives demonstrate how embodied knowledges can be combined with varying degrees of formal knowledge in hybrid ways of knowing and incorporated into the development of scientific research, federal policy, and political activism. This book provides a framework for understanding women’s health movements beyond resistance to medicalization, hormonalization, and biomedicalization. In contrast to early feminist health scholarship, the DES embodied health movement demonstrates how and why identifying “bad doctors” or “women as victims” is an insufficiently nuanced analytic approach for understanding regimes of practice: the fluid strategies and multiple effects produced when alliances are made, lines of inquiry pursued, and clinical interventions developed. Since the 1970s, after prenatal exposure to DES was found to cause reproductive tract cancer, young women who have become known as DES daughters have taken actions on their own behalf that have contributed to

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transformations in ways of knowing, investigating, and monitoring their now-hybrid bodies and lives. Their organized actions, emanating from DES Action and the DCN, led to interdisciplinary scientific conferences in 1992 and 1999 and funding and legislation favorable to research that continues to this day. These lines of research and practice have transformed the doing of science by incorporating activists in the conceptualization and conduct of DES science. Their embodied knowledges of DES are produced and circulated as well through newsletters, meetings, and face-to-face encounters as they and their caregivers address the reproductive tract cancer, infertility, and uncertain effects of DES. Their responses to uncertainties, disappointments, struggles, hopes, and failures contributed to developing studies of cancer recurrences and the developmental and reproductive effects of endocrine disruptors. Publicly telling their stories has allied them with other women’s environmental and health embodied movements. They have become important sources of change in health care and beyond health care in their challenges to medical policy and to political beliefs and to what can be said and to what cannot be said about women’s illness experiences. From different embodied experiences of DES—having cancer in the late 1960s or the late 1980s, seeking biological motherhood, or negotiating a pelvic examination with or without a new vagina, either inside or outside a teaching hospital—the daughters’ experiences reflect a diversity of subjectivities produced by DES. These diverse subjectivities channel back unevenly into institutionalized biomedical and cultural practices of treating and recovering from DES cancer, doing pelvics, and making and not making mothers. When one strand of this multistranded movement celebrated thirty years of activism and accomplishment at the New York City Fire Museum in 2008, doing pelvic exams was still a central plot, humorously conveying a sense of inevitability that the long-term effects of DES remain unknown and thus require lifelong dependence on “pelvics” and, at the same time, repositioning the participants. Inserting the discourse of cloning into this pelvic performance and suggesting that perfection is impossible simultaneously speaks to the expertification of DES activists as well as their incorporation into the discourse of technoscience. The tensions in this performance caution not to exaggerate the effects of embodied health movements even as they are celebrated. To study events in embodied health movements requires attention to detail, tracing multifaceted threads over time, across space, and in the talk that unfolds—such as in interviews and letters, autobiographical film and performances, and interdisciplinary scientific workshops. These social movements cannot be studied narrowly, as I have demonstrated. In the DES embodied health movement, the talk that unfolds includes encounters between

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patients, doctors, nurses, scientists, legislators, mothers, daughters, and families. Their encounters take place in different times and locations, before and after surgery for reproductive tract cancer, surrounding infertility treatment, and in doing and undoing science as usual. They punctuate anniversaries by celebrating them together. Sometimes, the women talk face to face, in private or public settings; other times, they write and read letters, make and watch films. “They” comprise a changing constellation of people, along with individuals’ perceived interests, health needs, and situations. The complexity of embodied health movements requires following the tape-recorded and transcribed talk surrounding slides and computer-generated images of internal organs and tumors in teaching hospitals and conference panels and discussions, as well as still and moving images beyond text in film and theater. The narrative analysis herein integrates this wide array of practices and exemplifies their transformative possibilities. The DES embodied health movement embraces fluid collectivities. Its past reflects the ways in which illness, suffering, and uncertainty can become opportunities for making social change. Its lessons include the value of embodied knowledges as integral elements in doing meaningful science.

Notes

Introduction 1. Research to date shows that “less than 1% of the daughters developed cancer but€.€.€. 90–100% of the daughters experienced various reproductive tract problems, including menstrual irregularities and infertility” (Fisher 1999, A298). For DES daughters, the risk of developing clear cell adenocarcinoma is typically estimated to be 1 in 1,000, although a 1998 report from the DES Follow-up Study that includes three cohorts of DES daughters estimates the cumulative incidence rate from ages fifteen to twenty-nine (when most cases of clear cell adenocarcinoma in DES daughters are diagnosed) to be 1.5 per 1,000 women (Hatch et al. 1998). The number of DES-related cases of cancer is tracked by the Registry for Research on Hormonal Transplacental Carcinogenesis. The Registry collects information about patients born after 1948 with clear cell adenocarcinoma of the vagina or cervix. As of December 2007, this international research registry had accessioned approximately 760 cases of clear cell adenocarcinoma, two thirds associated with prenatal DES exposure. Available at: http://obgyn.bsd.uchicago.edu/registry.html (accessed June 13, 2008). 2. See, for example, Seaman 1969 and Ehrenreich and English 1973a, 1973b. 3. See, for example, Riessman 1983; Martin 1987; Apple 1990; Lock 1993; Bell 1994, 1995; Davis 1995; Rapp 1999b; and G. Becker 2000. 4. See, for example, Clarke et al. 2003, Klawiter 2004, and Pitts-Taylor 2007. 5. See Cassell 2000 for examples of sovereignty in surgery. 6. Of course, “experience” is mediated by cultural discourses and institutional beliefs and practices. The classic critique of essential conceptions of “experience” is by Joan Scott (1991). Yet acknowledging that all knowledge (including experiential knowledge) is situated does not necessarily mean that experience should be rejected altogether as a source of knowledge. Kathy Davis writes that “experience” is not a straightforward or self-explanatory concept, but “rather than discarding experience as a ‘suspect’ concept, feminist scholars should be devoting their energies to finding ways to theorize it” (Davis 2007, 133). In her study of how social movements affect the experiences of women with breast cancer, Maren Klawiter theorizes that the way individuals experience illness is shaped “not only by individual circumstances of

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disease sufferers and the particular character of their pathologies, but by culturally, spatially, and historically specific regimes of practices” (Klawiter 2004, 846). 7. The concept of “hybrid” connotes transformations in social life, ways of understanding, and possibilities for social change and has informed feminist and science studies for the past twenty years. According to the Oxford English Dictionary, a “hybrid” is an offspring of two plants or animals of different species: a mongrel, half-breed, or cross-breed. Donna Haraway ([1985] 1991) took this meaning and incorporated it into her classic essay “A Cyborg Manifesto,” arguing that hybridity is characteristic of late-twentieth-century science, politics, and social reality, and that the cyborg, “a cybernetic organism, a hybrid of machine and organism,” exemplifies these pervasive sorts of “hybrid couplings.” These hybrid couplings breach boundaries between human and animal, physical and nonphysical, and animal-human (organism) and machine. Haraway’s provocative essay questions even the possibility of “identity” in which “we” can be clearly demarcated from “they” and foresees a transition “from the comfortable old hierarchical dominations to the scary new networks [she calls] the informatics of domination” (Haraway [1985] 1991, 161). Hybridity undermines lines of difference. It makes problematic “the statuses of man or woman, human, artifact, member of a race, individual entity, or body” (Haraway [1985] 1991, 178). Giving up the search for bounded individuals with distinct statuses or a “universal, totalizing theory” can open up the possibility of “heteroglossia” and of taking seriously partiality, fluidity, and monstrosity (Haraway [1985] 1991, 181). Beyond “binaries as two-sided frameworks,” the concepts of hybridity and cyborg initiate multisided and flexible mappings (Clarke and Olesen 1999, 10). For example, “brain-dead patient-cadavers” are particularly complex hybrids “constituted from culture and nature while in transition from life to death; person and nonperson, entirely dependent on a machine for existence” (Lock 2002, 40). These hybrids are profoundly unsettling and anxiety provoking, an extreme example of the unease and worrying that accompanies them. When she mapped “the social impacts and cultural meanings of amniocentesis€.€.€. beginning in the mid-1980s,” Rayna Rapp (1999a, 119) “pieced together a layered picture of where some of the force fields of amniocentesis meet and resonate.” Instead of worrying about setting boundaries, she let the categories “fall apart” and met “Donna Haraway’s cyborg constantly coming and going, sometimes worrying, sometimes celebrating the simultaneously eugenic and liberatory nature of her technologically embodied social self” (Rapp 1999a, 125). Despite the possibility of pleasure in these border crossings and confusions, some scholars have cautioned that they are also “fraught with difficulties and personal pain” (Creef 2004, 178). Finally, and importantly, beyond the possibility of new understandings, hybrids and cyborgs embody “enormous possibilities for creative resistance” (Creef 2004, 185). 8. Epstein found that AIDS activists used highly confrontational tactics in the 1980s but resisted the notion that the scientific establishment was the enemy, because “they always assumed that effective solutions to AIDS would have to come, in large measure, from doctors and scientists” (Epstein 2000, 543). This is similar to what Deborah Lupton finds in her study of consumerism: that at the individual level, “most people still articulated respect for doctors and faith in medical science. Even those people who had appeared to support and adopt the discourse of consumerism suggested that at least on some occasions that they would be willing to invest their trust and faith in a particular doctor, should that doctor earn this trust. This suggests the importance of acknowledging the personal experiences of individuals, including the embodied and affective dimension of illness, and how their interaction with experts is part of their ceaseless construction and reconstruction of subjectivity” (1997, 379). 9. The term “DES daughter” is not a straightforward and unproblematic term but a biomedical and political production, one created in the process of becoming a patient, an object of scientific research, and a political actor. The meaning of “DES daughter” is fluid and culturally produced by various interrelated actors and forces, including DES daughters themselves, at

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times conveying collective identities, at times referring to the lived experiences of individuals. For more on “subjectivation,” see Pitts-Taylor 2007 and Foucault 1978. For more on the diversity among DES daughters and the ways in which the term “DES daughters” masks it, see Chapter 2. 10. The interviews begin with this question: “How did you find out you were a DES daughter, and what was that like?” People often tell stories to make sense of events and circumstances in their lives, and thus, as I have argued previously, social scientists should attend to informants’ impulse to narrate and interpret interview accounts by identifying and interpreting them as narratives (Bell 1988, 2000). At the same time, not all discourse is narrative. Below, I give sustained attention to the meaning of “story” and “narrative.” Key sources guiding my approach to understanding narrative and employing narrative analysis in social science research include Riessman 1993 and 2008 and Mishler 1984, 1986, and 1999. 11. Alexandra Georgakopoulou takes up the distinction between “narrative analysis” (the study of narrative as an end in itself ) and “narrative inquiry” (the use of narrative as a means of understanding “the what and the who of narrative: what stories tell us about the teller’s self ”) and calls for synergy between the two in identity research (2006, 125). My use of the term “narrative analysis” assumes synergy and is not intended to signal an interest in narrative as an end in itself. 12. In their hundreds of letters to the Boston Women’s Health Book Collective, readers of Our Bodies, Ourselves gave personal testimony, engaged critically with “medical diagnoses and treatments,” and offered their letters as part of a larger project of knowledge production to help other women (Davis 2007, 159). Their letters were responses to a text that intentionally produced embodied, situated subjects who could use their experiences as critical epistemic resources to take control over their bodies and health (Davis 2007, 161). 13. The most recent visual narrative about DES, Wonder Drug, is a documentary film project by DES daughter Caitlin McCarthy, currently in process. A staged reading of Wonder Drug was hosted by the Hamptons International Film Festival in 2007. Wonder Drug was a finalist for Best Screenplay in the 2008 California Independent Film Festival and winner of the prize for Best Science Screenplay at the 2008 Woods Hole Film Festival. 14. Howard Becker, a long-term advocate for the use of visual methods in sociological research, argues that visual images are so thoroughly embedded in our worlds that to not take them seriously and to not work at making them part of analysis is to reduce our understandings of subjects’ worlds (2000). Two broad approaches to incorporating visual materials can be distinguished. The first is studying social life with images—for example, making images to study specific questions and issues in sociology and cataloguing life visually with a camera or drawings. The second is the interpretation of found images (Harper 2005). Narrative scholars have employed both of these broad approaches. Some tell stories with images, and others tell stories about images that themselves tell stories (Riessman 2008, 141). 15. Multiple terms are used to refer to this sort of project. Within the category of autobiographical documentary, Jim Lane (2002) further distinguishes “journal-entry documentary,” “autobiographical portraiture,” and “feminist autobiography.” According to Michael Renov (1999), “domestic ethnography” is a discursively unstable form of ethnography. In the Encyclopedia of the Documentary Film, Carolyn Anderson (2006, 68) distinguishes the diary form of autobiographical filmmaking (“shooting everyday events for a sustained period of time” and then producing a chronological narrative from them) from “autodocumentaries,” which “combine observational footage with interviews and archival materials to create life stories situated historically, often organized achronologically, usually with a voiceover narration by the filmmaker, and frequently bound by the parameters of family life.”

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Chapter 1 1. I use the term “postmodern feminist health scholarship” hesitantly, mindful that the term “postmodern” is currently suspect in academia. My reference to postmodern feminist health scholarship acknowledges its contributions: its critique of binaries, of the search for bounded individuals with distinct statuses, and of totalizing theories and especially the contributions of postmodern feminists to understanding the dangers of essentialist views of “the female body” and “experience” on one hand and of the ways in which cultural discourses shape bodies, experiences, and subjectivities on the other (see Haraway [1985] 1991, 1988; Scott 1991). At the same time, I share the concerns of Kathy Davis (2007, 129, 131), who points out that postmodern feminist theories of the body, in their emphasis on fluidity and transformation, ironically produce disembodied bodies, subordinate “the flesh and blood body to [their] theoretical projects,” and fail “to provide concepts that are salient for understanding the everyday realities of living in, with, and through a body with limitations.” See also Kuhlmann and Babitsch 2002. 2. Nelly Oudshoorn argues that “this hormonally constructed concept of the body has developed into one of the dominant modes of thinking about the biological roots of sex differences” (1994, 9). 3. According to Dolores Ibarreta and Shanna Swan (2001), DES was used for a variety of purposes even after the evidence of its damaging effects had been widely publicized. In 1973, the FDA discouraged its use as a postcoital contraceptive; its use as a growth promoter ended after 1979; “gradually use for other therapeutic purposes decreased and in the spring of 1997, Eli Lilly, the last, and predominant, manufacturer of DES in the United States, ceased production” (2001, 89). However, DES continues to be used in animal studies to trace its effects on third (granddaughter and grandson) generations of those exposed to DES prenatally and as a model for endocrine disruptor research (McLachlan 2006). DES was also used to treat prostate cancer in men. In animals, DES was introduced into veterinary practice to treat infertility in livestock and into agricultural practice beginning in the 1950s, where it was widely used to produce feminized poultry birds and to fatten sheep and cattle before slaughter (Bell 1980). In the 1960s, DES was added to “nearly 95 percent of feedlot cattle in America” (Langston 2008, 51). Before 1977, more than thirteen tons of DES were used annually as an additive in beef by the cattle industry (Krimsky 2000, 12). 4. Specifically, they recommended “diethylstilbestrol by mouth starting at the beginning of the sixteenth week with 30 mg. daily, and increasing the daily dose by 5 mg. at weekly intervals through the thirty-fifth week.€ .€ .€ . For patients in whom accidents are likely to occur before the fifth month, we are recommending 5 mg. daily starting 2 weeks after the last missed period, i.e., at the start of the seventh week of gestation, with 5 mg. increases in the daily dose at 2-week intervals to the sixteenth week and at weekly intervals thereafter” (Smith, Smith, and Hurwitz 1946, 414). 5. Centers for Disease Control, DES Update, “DES History,” available at http://www .cdc.gov/DES/consumers/about/history.html (accessed January 9, 2007). DES was also prescribed to pregnant women in Canada, Ireland and the United Kingdom, Europe, Scandinavia, and Australia (Bell 1999; Cody 2008). 6. In randomized controlled clinical trials (RCT), subjects are randomly assigned to either a treatment group or a control group. Subjects do not know to which group they have been assigned. The two groups are alike in every way except that subjects in the treatment group are administered the drug under investigation, and subjects in the control group are administered no treatment at all (a placebo). The results are then compared. In a double-blind RCT, neither the subjects nor the investigators know which group is the treatment group and which group is the control group. This approach to clinical research was introduced in the

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1940s. By the late 1960s, double-blind RCT “had become mandatory for FDA approval in the United States, and the procedure had become standard in most of the other Western industrial democracies as well by the late 1970s” (Timmermans and Berg 2003, 90–91). For a review of RCT of the effects of DES during pregnancy, see Apfel and Fisher 1984. 7. Diana Dutton explores the circulation of DES regimes of practice during pregnancy from the 1940s to the 1970s, including the emergence and responses to clinical trials that cast serious doubts on its effectiveness in the early 1950s, as well as its popularity even after publication of the Dieckmann study and others that “provided additional evidence that DES was useless in preventing miscarriages” (Dutton 1988, 56). She concludes that “doctors, drug companies, patients, and the FDA€.€.€. had a stake in prenatal DES living up to its claimed benefits as well as their own reasons for dismissing the discomforting evidence of its possible dangers” (Dutton 1988, 59). See also Apfel and Fisher 1984 and Bell 1989. 8. For detailed discussion of the use of DES in pregnancy after 1971, see Apfel and Fisher 1984 and Dutton 1988. 9. Food and Drug Administration, “Drug Bulletin: Diethylstilbestrol Contraindicated in Pregnancy,” Washington, DC: U.S. Department of Health, Education, and Welfare, 1971. When Herbst moved from Massachusetts General Hospital—where he had been on the faculty of Harvard Medical School—to the University of Chicago, he moved the Registry with him. See the Introduction, note 1. 10. Although the DESAD study was the largest at the time, comprising 4,014 DES daughters and 1,033 unexposed women, it was not the only cohort study of the effects of using DES in pregnancy begun in the 1970s; that same year, another study of DES-related health risks was initiated at the University of Chicago. The Dieckmann study was named after the chief investigator of the double-blind randomized controlled clinical trial (RCT) conducted from 1950 to 1952 at the University of Chicago that demonstrated DES was no more effective than a placebo in preventing miscarriage and that drew all its subjects from that earlier one (Dieckmann et al. 1953). The Dieckmann study included approximately eight hundred DES mothers and eight hundred mothers who were not exposed to DES, approximately four hundred DES daughters and four hundred women in a control group, and approximately four hundred DES sons and approximately four hundred men who were not exposed to DES prenatally. These follow-up studies are also referred to as “cohort studies,” because each of them tracks “cohorts” (groups of individuals who share something in common). The “DESAD cohort” is the group of people assembled for the 1974 program. The DES daughters in the DESAD cohort have documented evidence of DES exposure through record review of prenatal records or through physician referral. The “Dieckmann cohort” is drawn from the group of people assembled in 1974 to study DES-related health risks, and all of them were identified through the RCT conducted at the University of Chicago from 1950 to 1952 (CDC, DES Update, “DES History,” available at http://www.cdc .gov/DES/consumers/about/history.html [accessed January 9, 2007]). See also CDC, DES Update, “Understanding Scientific Research,” available at http://www.cdc.gov/des/consumers/research/understanding_scientific.html; and CDC, DES Update, “Role of DES Cohort Studies,” available at http://www.cdc.gov/des/consumers/research/understanding_cohort. html (accessed March 7, 2009). 11. Medical experts disagreed about the weight to give laboratory and clinical evidence, for example, and pharmaceutical manufacturers and federal regulators exercised power in the production and circulation of DES (Bell 1986, 1987, 1995); women patients were not entirely absent from the hormonalization process, as a recent review of their written words suggests (Houck 2006). 12. Ulfelder writes that he had “lived longer than any other human being with the knowledge that stilbestrol carried the potential for harm. I know this because I was the doc-

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tor asked by the concerned mother who first raised the possibility [that DES might have caused her daughter’s cancer]. And although my reply at the time was in the negative, my instinct told me forthwith that it might just possibly be so and, if it proved to be true, what calamities might yet be in store” (1981, xi). 13. Predating even involvement by AIDS activists at the NIH, as documented by Steven Epstein (1996). 14. Cody 1988. 15. Public Citizen is a national, nonprofit consumer advocacy organization founded in 1971 by Ralph Nader. It represents consumers in Congress, the executive branch of the United States government, and the court system. In 1972, Wolfe founded the Public Citizen’s Health Research Group, which promotes safer drugs and public health (available at http://www.citizen.org/index.cfm [accessed March 6, 2009]). By this time, Seaman was already well-known for her path-breaking feminist health books, The Doctor’s Case against the Pill (1969) and Women and the Crisis in Sex Hormones (with Gideon Seaman, 1977). The Department of Health, Education, and Welfare was created in 1953. When a separate Department of Education was created, “HEW became the Department of Health and Human Services, officially arriving on May 4, 1980” (U.S. DHHS, “Historical Highlights,” available at http://www.hhs.gov/about/hhshist.html [accessed July 13, 2006]). 16. The DES Task Force assessed the current state of knowledge regarding the drug’s carcinogenic potential, its effects on reproductive function, and psychosocial implications; made recommendations for protocols to follow for screening and follow-up; and reported that “all physicians and other health professionals should be informed of the Task Force’s findings and conclusions” and that “an additional and extremely important part of the message to be communicated to physicians concerns notification of patients for whom they may have prescribed DES in the past. The Task Force believes that it is imperative that all involved persons know of their exposure” (U.S. DHEW 1978, 18, 19, emphasis in the original). 17. “Updates and Upcomings,” DCN News, no. 1 (1986): 4. 18. DCN News, no. 6 (1991): 3; Clear Cell Cancer Research Bulletin, n.d. 19. DCN News, no. 6 (1991): 3; DCN News, no. 7 (1991): 3. 20. The meeting was funded by the San Francisco Foundation, the James Irvine Foundation, the Henry J. Kaiser Family Foundation, and the Fred Gellert Foundation. 21. The researchers were as follows: Howard Bern, Phyllis Blair, Anna Hill, Robert Smith, and Shanna Swan (“Summary of Meeting on DES Related Research,” July 18, 1985, UC Berkeley, unpublished, n.d.). 22. For example, in October 1989, an all-day DES Research Symposium in conjunction with a DES Annual Conference included DES scientific experts Candice Tedeschi, Kenneth L. Noller, and Arthur Haney on the program; the 1994 Annual Meeting of the DES Cancer Network included presentations by Herbst and psychiatrist Roberta Apfel, coauthor (with Susan M. Fisher) of To Do No Harm (1984). (DES Action Voice, no. 41; List of Presenters, DES Cancer Network Annual Meeting 1994, unpublished program.) 23. “Finding the Answers,” DES Action Voice, no. 22 (1984): 4. The two-page health history questionnaire was “informal. It [was] not [sic] intended to be a scientific study” but to be a “crucial ‘first look’” (p. 4). It asks men and women who know or think they are DES-exposed to “check” whether they had had allergies, asthma, diabetes, kidney or bladder problems, lupus, or multiple sclerosis, as well as conditions already commonly associated with DES exposure (adenosis, for example [“Health History Questionnaire,” DES Action Voice, no. 22 (1984): 5–6]). 24. “Finding the Answers,” DES Action Voice, no. 22 (1984): 4. The survey identifies the possibility of an impairment of the immune system, which was confirmed in the scientific

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literature and reported in 1988 (“Notes from Nora,” DES Action Voice, no. 51 [1992]: 5; Wingard and Turiel 1988). 25. DCN News, no. 1 (1986). Arthur Herbst and Diane Anderson (1981, 77) reported recurrences in 21 percent of 389 patients who had lived at least five years after their cancer diagnosis—“most recurrences have taken place within three years, but in two cases the interval was as long as seven years”—and referred to an earlier published analysis of 346 cases “with emphasis on recurrence and survival” (Herbst et al. 1979). 26. This was one of a series of national meetings in the early 1990s organized by the Office of Research on Women’s Health that began to define a national research agenda on women’s health (Clarke and Olesen 1999; Inhorn 2006). 27. DES Issues, no. 8 (1993): 2–3; DES Action Voice, no. 49 (1991): 3; DCN News, no. 7 (1991): 1–3. 28. DES Action Voice, no. 50 (1991): 3. 29. Although DES activists and other feminists participated in setting and then implementing the research agenda, the list of national research priorities was largely created by biomedical and public health professionals and supported biomedicalization and the “reproductive essentialization of women’s lives” (Ruzek and Becker 1999; Inhorn 2006, 350). 30. The funding is mandated by federal legislation for DES research and education. The DES Education and Research Amendments of 1992 (S.2837) were introduced by Senator Tom Harkin and were a companion to H.R. 4178 introduced by Representative Louise Slaughter. The bills had identical wording. DES activists worked with Representative Slaughter and Senator Harkin, long-time supporters of DES activism, to pass this federal legislation in 1992 and to renew it in 1999 and 2004. The DES Research and Education Amendments were signed into law by President George H. W. Bush in 1992 (Braun 2001, xvii; DES Action Voice, no. 54 [1992]: 3–4). In appropriating funds for the legislation, the FY 1993 Senate Appropriations Subcommittee Report underscored and required these new terms of work. The amendment states that the NCI would be “expected to work closely with organizations representing DES victims in developing and implementing the national education programs and longitudinal studies mandated by [this] legislation” (DES Action Voice, no. 57 [1993]: 7). As recently as 2004, the Senate reaffirmed its support for the DES studies and for continued consultation “with organizations representing individuals impacted by DES” in a report accompanying its appropriations bill (DES Research Update, Summer 2005, available at http://www.desfollowupstudy.org/2005_Newsletter.pdf). 31. DES Action Voice, no. 55 (1992); DES Issues Special Update (November 1993). 32. The DES Follow-up Study Web site provides up-to-date information about study participants, the families of study participants, and others. It is available at http://www .desfollowupstudy.org. 33. See the DES Follow-up Study Web site, available at http://www.desfollowupstudy. org/background_print.html (accessed August 4, 2005). 34. A “cohort” is a group of individuals who share something in common, such as the same year of birth or exposure to DES. In the context of an epidemiological cohort study, the “cohort” is followed over time. In the DES Follow-up Study, the five cohorts are groups of people from already-existing DES studies and their family members—the DESAD cohort, the Women’s Health Study cohort, the Mayo Clinic cohort, the William J. Dieckmann cohort, and the Herbert Horne cohort. The NCI-funded DES Follow-up Study put together the individual “subjects” of each of the cohorts to be able to track and compare DES daughters and unexposed control daughters, DES sons and unexposed sons, and DES mothers and unexposed mothers. See also note 10. For more details about each of the cohorts, see CDC’s DES Update Web site, available at http://www.cdc.gov/des/consumers/research/ understanding_cohort.html, or the DES Follow-up Study Web site, available at http://www .desfollowupstudy.org/index.htm (accessed March 7, 2009).

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35. When DES activist Pat Cody joined the steering committee, she brought with her a list of questions that had been ranked by the DES Action Board of Directors for consideration by the Follow-up Study. Hoover is quoted in DES Action Voice, no. 66 (1995): 1. See also DES Action Voice, no. 67 (1996). 36. DES Issues Special Update (November 1993). 37. DES Issues (Spring 1995): 4. 38. DES Action Voice, no. 57 (1993): 1, 7. 39. Summaries of each of the DES teleconferences—about infertility and reproductive health risks for DES daughters, health risks for DES sons, cancer risks for DES daughters, DES and breast cancer in DES mothers and daughters, and animal research findings—are available in PDF files from the DES Update Web site, available at http://www.cdc.gov/des/ consumers/tele/index.html (accessed July 23, 2007). 40. DES Issues (Spring 1995): 5. 41. DES Issues Special Update (November 1993). 42. At the very end of the recommendations submitted to the NIH from the 1992 DES Workshop was a suggestion to “hold additional DES Workshops to discuss and disseminate new research findings” (NIH 1992, 64). Seven years later, the recommendation was implemented. The 1999 DES Workshop (William H. Natcher Center, NIH, July 19–20) was sponsored by the NCI, the NIEHS, the U.S. Public Health Services’ Office on Women’s Health, and the CDC. I attended the 1999 workshop and wrote notes during it. The 1999 workshop was not recorded on audiotape, and Judith Helfand did not use her video camera to document it, but published Proceedings are available (U.S. DHHS 1999). 43. In 1992, individual research projects were presented sequentially on panels, whereas in 1999 they were displayed concurrently during poster sessions. For example, there were five basic research projects displayed as posters. The senior author of “Increased Tumor Prevalence in DES-lineage Mice” was Retha Newbold. Among the ten epidemiological research projects, “Cancer Risk in Women Exposed to Diethylstilbestrol in utero,” by E. E. Hatch and colleagues, “attempted to reassemble, combine, and update all of the U.S.-based cohorts established in the 1970s to study this exposure” (Poster Abstract, U.S. DHHS 1999, 65). In 1999, the program also included an evening screening of A Healthy Baby Girl (Helfand 1996). 44. The developmental effects of DES made it clear “that the human body could mistake a man-made [sic] chemical for a hormone” (Colborn, Dumanoski, and Myers 1997, 67). 45. For thirty years, NIEHS staff scientist Retha Newbold has used experimental animals to replicate changes observed in DES-exposed humans in order to understand mechanisms involved in DES-associated abnormalities and endocrine-disrupting chemicals (Newbold 2008, e55). 46. The hypothesis asserts that “a diverse group of industrial and agricultural chemicals in contact with humans and wildlife have the capacity to mimic or obstruct hormone function—not simply disrupting the endocrine system like foreign matter in a watchworks, but fooling it into accepting new instructions that distort the normal development of the organism” (Krimsky 2000, 3). 47. The path of the endocrine hypothesis from “scientific curiosity” to “mature public policy debate” in the mid-1990s is traced in Krimsky 2000. 48. For his “tireless dedication to research benefiting the lives of DES exposed individuals” for more than twenty years, DES Action honored McLachlan at the 1999 DES Workshop (Cody 1999, 3). 49. The overarching priorities for women’s health research have been “defined by the relatively powerful biomedical and public health establishments” (Inhorn 2006, 348).

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Chapter 2 1. The story is summarized in Herbst and Scully 1970; Herbst, Ulfelder, and Poskanzer 1971; Herbst and Cole 1978; Ulfelder 1980; Bichler 1981; Herbst 1981; Herbst and Anderson 1981; Orenberg 1981; Apfel and Fisher 1984; and Dutton 1988. 2. In a case-control study, “a group of diseased people are identified (the cases) and compared to a group of people drawn from the larger population (the controls)” (Steingraber [1997] 1998, 74). The people in the case group and control group are matched by age and other factors. With this retrospective analytic approach, investigators look “backward” in time and compare the medical and lifestyle histories of the two groups to learn what factors might be associated with the disease. In the case of DES, young women with vaginal clear cell adenocarcinoma (the cases) were compared to a group of young women without vaginal clear cell adenocarcinoma (the controls). See also National Cancer Institute, “Dictionary of Cancer Terms,” available at http://www.cancer.gov/dictionary. 3. Specifically, he proposed a one-stage procedure that combined abdominal and vaginal surgical approaches “adequate for the disease,” replaced the vagina with a (autologous) skin graft from the woman’s body “at the same operative sitting,” and “spared the ovaries, reconstructed the vagina, and avoided exposure of adjacent pelvic organs to irradiation” (Ulfelder 1980, 3008). 4. The “omental flap” refers to a fold in the peritoneum (the omentum) that connects the stomach with the liver, spleen, and other organs. Several of the DES cancer daughters I interviewed had had a sigmoid neovagina; others described one of the different methods. Aside from the need to keep their new vaginas pliable (by using dilators, dildos, or sexual intercourse), some DES cancer daughters have to monitor and control the swelling in their legs (lymphoedema) by wearing special stockings, using a pump, and checking for signs of infection. Colostomy (making an artificial colon through the abdominal wall) or ileostomy (making an artificial anus by attaching the ileum to the abdominal wall) are other procedures necessitated by the cancer surgery for some DES daughters, including several women I interviewed. 5. See the Introduction, note 1. A recent report from the DES Follow-up Study of the risk of breast cancer that compares DES-exposed and -unexposed women determines that before age forty DES daughters are no more likely than unexposed women to develop breast cancer, but after age forty they have two times the risk of developing breast cancer than unexposed women. For every one thousand DES daughters ages forty-five to forty-nine, four new cases of breast cancer are expected to appear each year, compared with two new cases of breast cancer each year in every one thousand unexposed women ages forty-five to forty-nine (Palmer et al. 2006). See also the DES Follow-up Study Web site, available at http://www .desfollowupstudy.org. 6. The attorneys for the class-action suit sent copies of my recruitment letter only to a random sample of DES daughters on their mailing list who did not qualify for participation in the class-action lawsuit. 7. Two of these interviews were conducted between 1992 and 1995. The other was a pilot interview I had conducted in 1982, and this DES daughter later gave me her consent to use it in the study. My shift in strategy is simultaneously a pragmatic response to the difficulty of locating DES daughters who had developed this very rare cancer and a reflection of transformations in sociological and anthropological approaches to the study of lives, in which the distinctions between researchers and subjects of investigation assumed within the modernist tradition became the focus of attention (Behar 1991, 1993, 1996; Behar and Gordon 1995; Bell 1999, 2000; Riessman 1993). 8. One of the DES cancer daughters did not complete a biographical questionnaire,

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and I was able to complete only one interview with her. Many of the biographical details are available in the interview. 9. Few reliable estimates of the number and demographic characteristics of women exposed to DES during pregnancy are available. The authors of a review article published in 1995 estimate that five to ten million Americans (DES mothers, DES daughters, and DES sons) were exposed to DES during pregnancy (Giusti, Iwamoto, and Hatch 1995). A report from the DES Follow-up Study published in 1998 estimates that “as many as 3 million women in the United States may have been exposed to DES in utero” (Hatch et al. 1998, 630). The race and level of education of the women in my sample reflects the demographic characteristics of DES daughters nationally. Consistently, the literature reports that, overwhelmingly, DES was prescribed to white women. Not surprisingly, given the race of the mothers, overwhelmingly, DES daughters are white. A 1994 survey of DES daughters in four DESAD centers and the Chicago Lying-In Hospital reports that 97 percent to 98 percent of the women were white (Kaufman et al. 2000); a 1994 survey of three cohorts from the DES Follow-up Study (DESAD, Chicago Lying-In, and Horne cohort) reports that 95.4 percent of the women were white, and 2.1 percent were not white (information about race was missing for 2.6 percent of the women [Hatch et al. 1998, 632]); and a survey of callers to the NCI Cancer Information Service 1983–1990 reports that most of the DES callers were white (Haynes 1992). DES daughters, as reported in studies based on the NCI DES Followup Study of more than twenty-one thousand women and men, are highly educated. Hatch and her colleagues report 10 percent of the DES daughters in their sample had less than a high school education or a high school diploma, and 70.1 percent of them had completed some college or had received a college degree (although for 19.7 percent, education data were missing [Hatch et al. 1998, 630]). 10. All names used in referring to the interview material are pseudonyms. 11. Specifically, we were inspired to write “Looking at Bodies: Insights and Inquiries about DES-Related Cancer” by our responses to a clinician-researcher speaking during a panel at the 1992 DES Workshop about screening and treatment for vaginal clear cell cancer who illustrated his presentation with slides, drawings, and tables and (as we put it) displayed a DES cancer daughter’s vagina “as a microscopic specimen to all present” (Bell and Apfel 1995, 10). 12. “Viewing Vaginas: Multiple Perspectives on the Aftermath of DES Cancer” was presented at the Eastern Sociological Society Annual Meeting, March 19, 1994, in Baltimore, Maryland, and at the DES Cancer Network Annual Meeting, September 23, 1994, in Chicago, Illinois. The written version of the presentation also includes sections of a letter written to us by one of the women in response to our request that we be allowed to incorporate a discussion of her experiences in this paper, after she had read an early draft (Apfel and Bell 1994). 13. The authors of the second study suggest several explanations for this dramatic change in attitude, including improved cancer therapy, changes in informed consent requirements, increased public awareness of cancer, and “the rise in the consumerism movement and increasing public scrutiny of the medical profession” during these periods of time (Novack et al. 1979, 899). 14. It may be that Esther’s repeated references to her age also served to underscore the rarity and severity of her cancer. She was less than half the average age of women who had had it before that time. 15. Prenatal exposure to DES has been connected with eating disorders in some women, although the most recent study of psychosexual characteristics of DES daughters and sons from the DES Follow-up Study finds “no association between DES exposure and anorexia or bulimia” (Titus-Ernstoff et al. 2003, 159).

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16. Molly maintained her vow of silence. Other than telling me that she had settled her case, she remained silent about it. She told me none of the details, and I did not ask her about them. 17. Molly mispronounces the word “adenocarcinoma,” which is preserved in the transcript. 18. “Vaginal adenosis is defined as the presence of glandular (columnar) epithelium or its mucinous products in the vagina” (Scully and Welch 1981, 26–27). The term “adenosis” was included in a glossary of DES-related terminology in the DES Action Voice: “the presence of nonmalignant glandular tissue in the vagina, normally found in the cervix. Estimated that 30–90% of DES daughters have this condition” (DES Action Voice 3, no. 3 [1982]: 5). Today, the Centers for Disease Control DES Update Web site reports that “approximately 1/3 of DES daughters have vaginal adenosis” (http://www.cdc.gov/des/hcp/information/daughters/ risks_daughters.html, accessed July 15, 2007). 19. The complications in Molly’s experience reflect a paradox within the women’s movement. On the one hand, feminists assumed that unity among women derived from a potential identity between women. This identity, in turn, was based on the idea that women share the same experiences. For example, they are economically oppressed, commercially exploited, and legally discriminated against. In addition, they feel inadequate and attribute these experiences to personal flaws. These external and internal similarities create the basis for common feelings between women. The expression of this community of feeling and experience is women’s politics and women’s organizing (Delmar 1986). Molly’s assumption that there is a woman’s way of knowing and that all women are sisters reflects this “side” of the paradox. On the other hand, women are situated differently from one another, and thus their experiences and feelings vary; the meaning of “woman” and “feminism” is not universal. The universalizing claims of feminism marginalize or exclude the lives of many women, such as women of color and working-class women. For more on this paradox and tensions within feminism, see Davis and Fisher 1993, Herrmann and Stewart 1994, and Ferree and Martin 1995. Sandra Morgen explores this paradox in the women’s health movement by “pivoting the center€.€.€. away from the predominantly white women’s health movement to explore how women of color sought to tailor activism to the needs and resources of their own vibrant and diverse communities” and thereby reshaped the women’s health movement and politics of health (2002, 43). Morgen quotes and draws upon Elsa Barclay Brown’s felicitous phrase, “pivot the center,” in introducing this discussion. 20. Our Bodies, Ourselves successfully produced readers “prepared to become embodied, critical, epistemic agents able to participate in a feminist politics of health” (Davis 2007, 142). By contrast in many cases, translations of Our Bodies, Ourselves explicitly emphasized the “necessity of using OBOS in communal settings rather than as a book to be read by an individual woman in the privacy of her own home” (Davis 2007, 195). 21. Many DES daughters have changes in the structure of their cervix or uterus. “Cervical cockscomb,” or cervical hood, refers to a raised ridge of tissue—called a cockscomb—that may form on the edge of the cervix “as a ring around the cervix, or as a fold in the back of the vagina which may partially cover the cervix” (DES Action Voice 3, no. 3 [1982]: 5; see also Orenberg 1981, 59). This is not harmful and often disappears over time. In some DES daughters, the inside of the uterine cavity is smaller than normal and has a “T” shape, “with hornlike extensions emanating from the upper portion of the uterine cavity” (Scully and Welch 1981, 35). A “T”-shaped uterus is associated with problems in pregnancy. No treatment has been established to correct this anomaly in the uterus (“DES Daughters,” available at http://dccps.nci.nih.gov/acsrb/pubs/des_pubs/DES_Daughters/desdaughtershome.html [accessed November 22, 2008]). 22. This critique is still voiced by DES daughters. A focus group study of sixteen DES

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daughters in 1995 reports that “overwhelmingly€.€.€. [the] women felt that, at some point, they had received what they believed to be false reassurance€.€.€. that their medical concerns were not adequately addressed” (Duke et al. 2000, 442). 23. For more details about prenatal exposure to DES and pregnancy, see Chapter 3. 24. A cone biopsy—also referred to as “conization”—consists of removing a cone-shaped piece of tissue from the cervix or cervical canal. It is used to diagnose or to treat a cervical condition, such as dysplasia (National Cancer Institute, “Dictionary of Cancer Terms,” available at http://www.cancer.gov/dictionary/?searchTxt=cone+biopsy&sgroup=Starts+with&la ng=&btnGo.x=13&btnGo.y=10 [accessed November 22, 2008]). 25. On this point, see Frank 1991, 27. 26. This narrative exemplifies what I refer to as “collaborative performance” (see the Introduction). Deborah’s dramatization of the second and third narratives in her use of direct speech, asides, and the historical present is “a distinct genre of talk” that is more likely to occur when there is a degree of familiarity between speakers (Riessman 2008, 112). 27. As noted at the start of this chapter, before DES, clear cell adenocarcinoma was considered to be a cancer “spontaneously” occurring in women over age fifty, and for this reason many experts believe there will be a second peak of DES cancer as DES daughters age. Among the accessioned cases in the Registry, there “appears to be a slight rise among those over age 40” of clear cell adenocarcinoma (Herbst 2000, 147). 28. Dumit and Sensiper (1998) were particularly interested in the effects of DES in pregnancy and began their article with an extract from a complaint Sensiper, a DES daughter, had filed with the Medical Board of California after complications from an ectopic pregnancy in 1993. Chapter 3 1. The Spring/Summer 2001 DES Research Update, a “study newsletter” sent to participants in the DES Follow-up Study, notes that “while DES daughters have been studied extensively, there have been few studies of the DES-exposed males” (NCI 2001, 3). Although “studies in the 1980s suggested possible infertility problems in DES-exposed males,” more recent research indicates “that intrauterine DES exposure did not impair fertility or sexual function in adult” DES sons (Herbst 2000, 149). In her introduction to the Centers for Disease Control’s DES Teleconference, “Health Risks for Sons,” Linda Titus-Ernstoff reports that “DES exposure in men is associated with an increased risk of minor genitourinary conditions, which don’t seem to influence fertility or reproductive outcomes” (CDC 2003, 5). There are “various theories” about how DES affected the development of males and females exposed to it prenatally. Its effects vary according to the time in pregnancy it was started and the total dosage given—and these practices varied widely. The effects in both males and females appear to occur primarily in the “Mullerian ducts,” which in females develop into a vagina and in males develop into testes and prostate (Herbst 2000, 150). For decades, animal studies have indicated that prenatal exposure to DES “may cause persistent epigenetic changes in some genes and not others such that the fate of tissue or organs is altered” and may persist through generations of cells in one organism (a DES daughter) and even into the next generation of an organism (a daughter of a DES daughter [McLachlan 2006, 869]). A study published in 2006 of the daughters of DES daughters gives preliminary evidence that this persistence from one generation to the next generation also occurs in humans (Titus-Ernstoff et al. 2006). 2. Ann Snitow argues that although second-wave feminism “set out to demystify the experiences of both mothers and nonmothers€.€.€. [it] has been less successful at imagining how a full and deeply meaningful life is possible for women without children” (Chase and Rogers 2001, 18).

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3. The ideology of “intensive mothering,” according to Sharon Hays (1996, 8–9), is a “fully elaborated, logically cohesive combination of beliefs” that the biological mother should be the central caregiver, put all her children’s needs above her own, and value childrearing more than paid work. Intensive mothering is “child-centered, expert-guided, emotionally absorbing, labor-intensive, and financially expensive” (emphasis in the original). DES daughters approach becoming mothers with a similar intensity, effectively becoming intensive mothers even before becoming pregnant. Their desire to become mothers expresses itself in terms of what might be called “intensive pre-mothering practice.” 4. “Infertility,” the inability to conceive after one year of unprotected intercourse or the inability to carry a pregnancy to term, affects between 8 and 12 percent of couples worldwide (Inhorn 2003, 1837). Infertility is highly prevalent in some parts of the developing world, particularly in sub-Saharan Africa, where national averages range from 12.5 to 16 percent (Inhorn 2003, 1839). Worldwide, about 5 percent of couples experience infertility because of “anatomical, genetic, endocrinological, and immunological problems” (Kols and Nguyen 1997, 2), including such problems as those resulting from prenatal exposure to DES. The rest experience infertility largely because of reproductive tract infections, particularly sexually transmitted infections (Kols and Nguyen 1997). 5. Of the 6.3 million pregnancies in the United States that ended in 1999, “just over six in ten pregnancies€.€.€. ended in a live birth, one in five in an induced abortion, and about one in six in a fetal death” (Ventura et al. 2003, 3). 6. From 1979 to mid-1984, each issue of DES Action Voice was identified by volume and issue number. Beginning with the 1984 issue, the conventions changed. The Fall 1984 issue of DES Action Voice was given a number only (22), as was each subsequent issue: DES Action Voice, no. 23 (Winter 1985); DES Action Voice, no. 24 (Spring 1985); and so forth. 7. In 1997, DES Action created a Listserv for DES-exposed persons; between 1997 and 2001, just two letters about pregnancy were published in DES Action Voice as well as reprints of several e-mail messages from 1997 and 1998. 8. For a very small minority of the women, the dreams became reality after complicated medical interventions, such as gamete intrafallopian transfer (GIFT) or in vitro fertilization (IVF [DES Action Voice, no. 41 (1989); no. 42 (1989); no. 44 (1990)]) but for most, the letters describe experiences of ectopic pregnancies, miscarriages, premature births, and attempts to prevent these losses with various combinations of cerclage, bed rest, hormones, and vigilance (medical surveillance). GIFT and IVF are two forms of assisted reproduction technology (ART). Both involve removing eggs from a woman’s ovary and combining them with sperm. In the case of GIFT, the unfertilized eggs and sperm are then placed in a woman’s fallopian tube through small incisions in her abdomen, guided with a laparoscope (CDC, 2006 Assisted Reproductive Technology [ART] Report: Appendix B, “Glossary,” available at http://www.cdc.gov/ART/ ART2006/appixb.htm#G [accessed March 8, 2009]). IVF is the most common form of ART. With IVF, eggs are combined with sperm in a petri dish and incubated for an additional twelve to eighteen hours to allow fertilization to take place. If fertilization takes place, the embryos (or zygotes or gametes, depending on the specific process) are then transferred back into the woman’s uterus through her cervix (Boston Women’s Health Book Collective 2005, 520–521). 9. From 1979, when DES Action Voice was first published, until 1983, when this letter appears, there were twenty-two articles, reports, medical abstracts, letters, “Personal Views,” or book reviews about the effects of DES on pregnancy in thirteen of seventeen issues (vols. 1–5). In addition, two glossaries were published, defining “cone biopsy” (vol. 1, no. 2 [1979]; vol. 3, no. 3 [1982]) and “dysplasia” (vol. 3, no. 3 [1982]). 10. Different typeface is used for the letters and articles published in DES Action Voice to clearly distinguish these narrative accounts from the talk produced during interviews and conferences and then transcribed into written texts.

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11. See Chapter 2, note 24. 12. “Cervical cancer” is my oversimplification of this uncertainty. “Squamous cell cancer” was the type of malignancy reported in 1981 (Robboy et al.) and 1985 (U.S. DHEW 1971). “C.I.N.” or “cervical intraepithelial neoplasia”—abnormal tissue that “may or may not be malignant”—was given as a synonym for “dysplasia” in a DES Glossary published in 1990 in DES Action Voice (Emery 1990, 4). At the National Institutes of Health–sponsored interdisciplinary conference, “DES Research Update 1999: Current Knowledge, Future Directions,” cervical dysplasia carcinoma was listed as a possible effect of prenatal DES exposure (NIH 1999, 3). A reanalysis of the DESAD cohorts by Elizabeth Hatch and her colleagues, reported at the conference, “indicated a relative risk of 1.5 for DES-exposed daughters compared with unexposed daughters. When the analysis was restricted to those with frequent screening the increased relative risk disappeared” (NIH 1999, 19). In addition, a treatment for dysplasia, conization, is one of three traumatic injuries to the cervix discussed in a 1980 review of the literature on cervical incompetence (the other two are amputation and lacerations that occur during forceps deliveries, therapeutic abortions, or very sudden and short labors [Cousins 1980, 469]). According to that review, cervical trauma, including conization, has been associated with cervical incompetence ever since the condition of “incompetent cervix” was first recognized in the late nineteenth century (Cousins 1980, 469). 13. DES daughters are more likely than women who are not prenatally exposed to DES to have ectopic pregnancies. 14. The use of Delalutin shots is another example of uncertainties and risks in becoming a mother after DES. According to the 1980 review and reappraisal of the etiology and treatment for cervical incompetence, progesterone was believed to suppress uterine contractions (“myometrial contractility”) and to result in decreased isthmic and cervical diameters, and thus it was one of the treatments for an incompetent cervix, although its potential negative effects on the developing fetus (“teratogenicity”) were of some concern (Cousins 1980, 472–473). By 1992, a review of “the incompetent cervix” notes that “it is now generally accepted that there is no place for progesterone in the treatment of cervical incompetence” but gives no explanation for this (Edozien 1992, 265). 15. The connection between Stacey’s cone biopsy and her incompetent cervix is not necessarily a causal one. Even though cone biopsy can increase the risk of subsequent pregnancy, this does not mean it is the culprit in Stacey’s case. A cone biopsy involves some risk of subsequent pregnancy loss, because it may weaken the cervix (Boston Women’s Health Book Collective 1998, 656) or increase the risk of infertility as a result of causing the cervical canal to become narrower or blocked (“cervical stenosis” [Orenberg 1981, 78–79]). 16. The high rate of cesarean delivery in the United States has been sharply criticized by women’s health activists and others who claim that this intervention is often unnecessary and point to the increase in births by cesarean as one indication of the medicalization of childbirth. The rate of cesareans increased dramatically from 5.5 percent of all babies being delivered by cesarean in 1970, to 16.5 percent in 1980, and 22.7 percent in 1990 (U.S Bureau of the Census 1990, table 89; U.S Bureau of the Census 2001, table 81). According to the National Center for Health Statistics (NCHS), 22.8 percent of all babies were delivered by cesarean in 1989, compared with 26.1 percent in 2002 (NCHS 2003, table 39) and 30.2 percent in 2005 (NCHS press release, November 21, 2006, available at http://www .cdc.gov/od/oc/media/pressrel/r061121.htm?s_cid=mediarel_r061121_x [accessed July 24, 2007]). 17. Ordinarily, a cervix begins to dilate in response to uterine contractions during labor. In the case of an incompetent cervix, the developing fetus exerts pressure on the cervix, which begins to open and thin out before the pregnancy has reached term (Hendrickson 2004). Thus, cervical incompetence is often “associated with premature rupture of membranes or

Notesâ•… 191

bulging of the fetal membranes into the vagina” during the second trimester of pregnancy, thereby causing miscarriage (Cousins 1980, 468). 18. In a brief communication to the American Journal of Obstetrics and Gynecology, one pediatrician wondered whether the use of this term might be an act of “inadvertent insensitivity” by physicians in their communications with parents after a stillbirth or birth of a very premature baby (Fox 1983, 463), because it blames the woman for the problem. In his clinical experience, women had expressed feelings of “incompetence and inadequacy” as mothers, blaming themselves for the birth or stillbirth of extremely premature infants (Fox 1983, 462). The term has also been contested in DES Action Voice, in an article ironically titled, “Which Is Incompetent, Cervix or Terminology?” (Mattingly 1989). 19. For the DES cancer daughters, mothering cannot be disentangled from their experiences of cancer; the other mother had worried about the possibility of trouble but had not had any difficulties. 20. See Layne 2003, 6. 21. In her study of pregnancy loss, Linda Layne writes that “a pregnancy that ends in miscarriage, stillbirth, or infant death€.€.€. lends itself to ironic treatment, for the outcome is certainly worse, far worse, than what the would-be parents anticipated” (Layne 2003, 174). 22. A “hysteroscopy” involves looking directly inside the uterus “through a small incision, under local or general anesthesia” (Turiel 1987, 1). For a “hysterogram,” also known as a hysterosalpingogram, dye is injected into the uterus and fallopian tubes, followed by an x-ray. 23. DES Action Voice, no. 83 (Winter 2000): 1. See also http://www.descancer.org/timeline.html (accessed March 8, 2009). For a history of the use of DES in food-producing animals, see Dutton 1988. In describing Hannah’s cervix like a hamburger, her physician evoked this highly contested agricultural practice, whether or not he intended to do so, and Hannah repeats it in her exchange with me. 24. The probability that DES daughters will be more likely than a comparative group of nonexposed women to suffer pregnancy loss does not mean that each individual DES daughter will lose a pregnancy or that when a pregnant DES daughter does lose a pregnancy, the loss can absolutely be attributed to her prenatal exposure to DES. 25. The use of “I guess” complicates the interaction between us. Whereas “you know” establishes Rachel as the information provider and me as the information recipient, “I guess” communicates uncertainty about these statuses and perhaps even about who is the provider and who the receiver of information. 26. “When Is Enough Enough?” is the title of Goldstein’s “Personal View” in DES Action Voice, no. 39 (1989). Here, I focus on one counterdiscourse: not becoming a mother. Two others that are interconnected with it also appeared in DES Action Voice and were also overwhelmed by the dominant discourses of biological intensive motherhood: the discourses of risk and adoption. Regarding risk, an article by DES daughter Anita Direcks (DES Action Voice, no. 28 [1986]), “Has the DES Lesson Been Learned?” considers how “IVF developments are so suspiciously similar to the story of DES” (1) and worries that “there will be an action group for test-tube children within 15 to 20 years” (4). Chapter 4 1. Centers for Disease Control, DES Update: Health Care Providers. “Identification of DES Daughters,” available at http://www.cdc.gov/des/hcp/information/daughters/identify_daughters.html (accessed July 15, 2007). See Chapter 2, notes 18 (vaginal adenosis) and 21 (T-shaped uterus). 2. See Chapter 2, note 21.

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3. Changing understandings and contradictory evidence of the effects of these anatomical changes on the reproductive “capacities” of DES daughters, alongside interventions for becoming mothers, are described in Chapter 3. 4. See Chapter 2, note 18. 5. Dysplasia refers to abnormal cell growth or development; cervical dysplasia refers to this process in and on the cervix. The question for DES daughters is not only whether there is an increase in dysplasia but also what the relationship is between “cervicovaginal dysplasia” and squamous cell carcinoma of the vagina and cervix (Giusti, Iwamoto, and Hatch 1995, 783). Squamous dysplasia is a premalignant lesion on the cervix and may take years to develop into squamous cell cancer (cervical cancer [Goldberg n.d., 33]). 6. “Cryosurgery” refers to “the destruction of abnormal tissue by freezing or the application of extreme cold” (DES Action Voice 3, no. 3 [1982]: 5). 7. At the time of her surgeries, Canon Law was undergoing a major revision, another example of how this was a border time. Revision of the Code of Canon Law, which had been codified in 1917, began with Vatican II during the 1960s, continued for almost twenty-five years, and ended in 1983, when the 1983 Code of Canon Law was promulgated (Catholic University of America Staff 2003).Two landmarks in the official response of the Church to the turmoil surrounding Catholic sexual ethics during the 1960s are Vatican II (1962–1965), which “rejected the priority of the procreative over the unitive end of marriage” (Kosnik et al. 1977, 85), and the Humana Vitae (Paul VI 1968), which simultaneously abandoned the hierarchical language regarding the unitive and procreative meanings of “the conjugal act” and still retained “the ban on artificial contraception” (Cahill 1989, 121). In conjunction with Vatican II, the Church revised its Code of Canon Law, the formal legal structure that embodies the ecclesiology and doctrine of the Church. 8. I am indebted to Matt Tomlinson for this way of understanding the chaplain’s warning to Cassie (pers. comm., September 29, 2004). 9. Leaving aside the gap between Canon Law and moral law, doctrinal teaching and everyday life, Cassie’s deep commitment to Catholicism and her wish to be a good Catholic justifies this turn to Canon Law in making sense of Cassie’s narrative. 10. This performance feature also presents the chaplain as an external voice of authority, a disciplining speaker (“he said”). By contrast, Arthur is referred to through his interior states and his feelings (“he hated”), not only regarding his hatred but also in terms of Cassie’s earlier utterances about him (“he didn’t want€.€.€. had bad feelings”). Cassie presents Arthur in reference to the feelings he had inside, and she presents the chaplain in reference to the commands he uttered. This performs Cassie’s own experience of the Catholic Church as a disciplining authority over people’s interior selves. (Matt Tomlinson, pers. comm., September 29, 2004). 11. If a speculum “serves as a metonym for the pain and discomfort that many women associate with a gynecological exam” (Kapsalis 1997, 120), then perhaps Esther’s leaving it unnamed in her narrative supports the meaning she is building here of a different kind of exam, one in which there is wonder, teasing, irony, and pleasure. 12. The use of intestine to make a “sigmoid neovagina” is one of several procedures for vaginal reconstruction used in treatment of DES daughters (Wheeless 1992). See Chapter 2. 13. Quoted words and phrases not assigned line numbers refer to interview talk outside of the two narratives analyzed in this chapter. 14. According to public health recommendations for DES daughters, in place since 1985, the use of a colposcope is not required at every examination but should be used during initial examinations where feasible, as well as upon the “observation of an abnormal Pap smear” or “when there are extensive or widespread epithelial changes” (NIH 1992, app. 6). Colposcopy is still not routinely recommended as a screening method for DES daughters,

Notesâ•… 193

but it is recommended “to further characterize abnormalities detected by cytology, visualization, and/or palpation” (NCI, DES Update: Health Care Providers, “Medical Management Steps,” available at http://www.cdc.gov/des/hcp/information/daughters/risks_daughters. html#steps [accessed July 17, 2007]). 15. The coda implies that to be normal, Ruth would need to be able to conceive, to carry a pregnancy to term, and to give birth to a healthy baby without trouble, reproducing the dominant discourse of mothering examined in Chapter 3. 16. As she told me earlier in the interview, “that has affected the way that I behave now, like, I, trust [my doctor] implicitly and, a’and yet I went and got four other opinions and I wasn’t gonna say, ‘oh he is god doctor fix me.’” 17. In the introduction to one of the monologues, Eve Ensler’s play incorporates a story of “the stunning young woman in Oklahoma who€ .€ .€ . had been born without a vagina” (Ensler 2001, 99). Chapter 5 1. I listened to all thirteen of the tapes closely. I used the workshop program as a guide and matched titles of sessions, lists of panelists and paper titles, chairs of sessions, and the list of registrants with the tape-recorded materials. For my analysis, I identified people speaking on the panel or asking questions from the audience (all speakers were asked to identify themselves before asking a question, and this request was usually honored). The workshop was open to the public, and the tape-recorded materials are publicly available. Everyone who registered for the workshop was informed that the proceedings would be recorded. Publicly available information about individuals, such as this, may be used without obtaining consent, and thus, I did not ask for informed consent from those whose words are quoted in this chapter. I provide the names and affiliations of all quotations from panelists who were listed on the program and whose presentations were published in the Proceedings (1992). I also provide the names and affiliations of those giving keynote addresses. I do not report the names or provide identifying details about the two DES daughters whose questions from the workshop floor are analyzed in this chapter. For each session, I noted the total number of questions, the number of questions by women and men, and the total number of questions by DES mothers, DES daughters, DES Action members, and DCN members. I identified the person asking the question by name if I could. If someone asked a question more than once—even during the same session—I counted them as separate questions, unless they were part of a question-answer exchange. In this case, I counted the entire question-answer exchange as one contribution to the discussion. If the person spoke again after someone else had asked a question, then it was recorded as a separate instance of asking a question. All contributions from people on the panel during the session that they were on the panel are treated as “answers” to questions instead of “questions” (they are not recorded numerically). If I could identify someone, I did. If I thought I could identify a speaker (the voice or the content of what the person said or what another person said in reference to the speaker), I identified him or her with a *?*. If I knew that someone was a DES mother or daughter or a member of DES Action or the DCN, but she did not identify herself that way at any time during the workshop, I did not count her as a DES mother or daughter or a member of DES Action or the DCN. If a person ever identified herself that way during the workshop, I counted it every time she spoke. This yielded the following totals: 127 questions 84 asked by women

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43 asked by men 5 questions asked by DES mothers 27 questions asked by DES daughters 16 questions asked by DES Action members 9 questions asked by DCN members In my transcripts, I included pauses, hesitations, repetitions, and nonlexical utterances. 2. Swan, April 23, 1992, Session #4, Tape 5, Side A. Tape recordings from the workshop are identified by the date, session number, and tape number/side. 3. The quotes are from Cody, DES Action Voice, no. 53 (1992): 5, and from Braun, April 22, 1992, Opening Session, Tape 1, Side A, respectively. 4. Herbst, April 22, 1992, Opening Session, Tape 1, Side B. 5. Pinn, April 22, 1992, Opening Session, Tape 1, Side A. 6. At the 1992 workshop, there were no concurrent sessions. This organizational form encourages continuity over the course of a meeting, because participants attend the same panels and hear the same papers. At the conclusion, when “recommendations” are generated, participants draw from the same sequence of panels and discussions (although not everyone attends all the panels, interprets the same panels or discussions similarly, or stays until the last session). Another organizational form for a conference includes concurrent sessions, so that participants do not progress through events similarly. They take different pathways through a meeting, their paths might not ever cross, and there is less likely to be a concluding session that is intended to draw together or generate recommendations for the future. 7. Slaughter, April 22, 1992, Opening Session, Tape 1, Side A. 8. Pinn, April 22, 1992, Opening Session, Tape 1, Side A. 9. Cody, DES Action Voice, no. 53 (1992): 5. 10. Braun, April 22, 1992, Opening Session, Tape 1, Side A. 11. DES Action Voice, no. 53 (1992): 6. 12. Rosenberg, April 22, 1992, Session #1, Tape 2, Side B. 13. Colton, April 22, 1992, Session #1, Tape 2, Side B. 14. Rosenberg, April 22, 1992, Session #1, Tape 4, Side A. 15. DES daughter, April 22, 1992, Session #1, Tape 4, Side B. 16. Anonymous (unidentified speaker), April 22, 1992, Session #1, Tape 4, Side B. 17. Another effect may also be seen in the discussion following the second session (Screening and Treatment for Vaginal Clear Cell Cancer), when this DES daughter stepped up to the microphone and criticized one of the gynecologic oncologists for a joke he made during his panel presentation, urged him to use sensitivity and discretion, and received an apology from him (DES daughter and physician, April 23, 1992, Session #2, Tape 2, Side A). 18. DES Action Voice, no. 22 (1984): 4. 19. Wingard, April 23, 1992, Session #3, Tape 3, Side A. 20. Swan, April 23, 1992, Session #4, Tape 5, Side A. 21. Swan, April 23, 1992, Session #4, Tape 5, Side A. 22. Gunnar-Forsberg, April 24, 1992, Session #6, Tape 2, Side B. 23. Bern, April 22, 1992, Opening Session, Tape 1, Side B. 24. Giusti, April 24, 1992, Session #6, Tape 2, Side B. 25. DES daughter, April 24, 1992, Session #5, Tape 2, Side A. 26. In her presentation, Apfel, coauthor (with Susan M. Fisher) of To Do No Harm (1984), had noted that “little is known about the emotional arena / it is the last to be considered at this thorough and important conference / um in our work Susan Fisher and I€.€.€. came to believe that we save emotions for last because they are so painful to researchers and

Notesâ•… 195

clinicians alike as well as to the people exposed” to DES (Apfel, April 24, 1992, Session #5, Tape 2, Side A). 27. The DES daughter was the seventh person to step up to the microphone; Phillippe was the twelfth. 28. Phillippe, April 24, 1992, Session #5, Tape 2, Side A. 29. Apfel, April 24, 1992, Session #5, Tape 2, Side A. 30. Tung, April 24, 1992, Session #6, Tape 3, Side B. 31. Apfel, April 24, 1992, Session #5, Tape 1, Side A. 32. I do not remember which night it was that Picoult performed My Virginia, or which day we sat and talked about Helfand’s film. 33. Apfel, April 24, 1992, Session #5, Tape 1, Side A. 34. All quotations from My Virginia. Used with the permission of Abrams Artists Agency, © 1991 Darci Picoult. 35. This was the producer of “The Children of DES,” screened in August 1992 on PBS as part of the Health Quarterly series. Helfand had been invited to work on this film and had volunteered to do pro bono archival research for it. See Chapter 6. 36. According to McGrory (1992), Helfand “sobbed€.€.€. at the news conference.” McGrory wrote that Helfand was “black-haired, black-eyed and very angry. ‘It is a complete waste,’ she rages. ‘I try to turn my fury into productive activities. I make documentaries about what is happening to me. We are trying not to be good victims. I was a commercial risk for the drug companies.’” 37. Apfel, April 24, 1992, Session #5, Tape 1, Side A. 38. See also Giusti, April 24, 1992, Session #6, Tape 2, Side B. 39. See Chapter 6 and Chapter 1, note 31. 40. See Chapter 1. 41. Phillippe, April 24, 1992, Session #5, Tape 2, Side A. Chapter 6 1. Requiring a medical exam before starting work has been used to sort out “risky” from “not risky” employees, a form of surveillance that historically has been contested by health and labor activists. In this instance, feminist filmmakers used the practice to protect as opposed to screen out DES daughters. 2. The screening was coordinated with “A Healthy Baby Girl” Web page, which encourages comments and provides a list of resources, a community action guide, and a brief history of DES (available at http://www.itvs.org/external/babyg/hbgmain.html [accessed August 8, 2007]). The film was rebroadcast on the Sundance Channel on Mother’s Day in 2007 (http://www.judithhelfand.com [accessed July 19, 2008]). 3. The quoted passages are from “A Healthy Baby Girl” home page, available at http:// www.itvs.org/external/babyg/hbgmain.html (accessed August 9, 2008). 4. The description and transcript of the film are based on my repeated viewings of it as well as discussions with Helfand and a copy of the script. 5. According to the framework established by William Labov and Joshua Waletzky (1967), the first narrative, comprising the opening scenes in the film, serves as an orientation and abstract of the film as a whole. 6. In her personal statement posted on the “A Healthy Baby Girl” Web site, Helfand writes, “The lyrics [of “Shluf, shluf, shluf”] tell a story of a mother comforting her baby: ‘Papa will come to the village, he’ll bring an apple to heal your head, nuts to heal your feet, soup to heal your tummy’—wholesome foods to heal any ailment. The song speaks to what has been lost—my

196â•…Notes

parents’ ability to protect me with simple nurture, my own ability to bear children. But the Eastern European Jewish klezmer music in the film is also used to reclaim what DES and toxic exposure have threatened—family, tradition, and continuity” (Helfand, “Filmmaker’s Statement,” available at http://www.itvs.org/external/babyg/judithltr.html [accessed August 8, 2007]). 7. The image recalls the early-sixteenth-century ceiling fresco “Creation of Adam,” by Michelangelo, in the Sistine Chapel in Vatican City, a particularly ironic association in this context. Among many associations of meaning is that the “creation” pointed out by God is Adam, whereas in Helfand’s film the “creation” is cervical cancer; the radiologist in the film is in “God’s” position, and his “creation” is an out-of-body computer-mediated image of body parts in place of a spectacularly beautiful man. 8. The Klezmatics wrote the score for the film as well. Since the band’s inception in New York City in 1986, the Klezmatics have fostered musical hybridity by embracing klezmer and melding cultural statements (that Yiddish must be spoken or it will disappear), historical politics, and modern activism (http://www.klezmatics.com/index.php [accessed July 15, 2008]). Joining the Klezmatics in A Healthy Baby Girl are clarinetist David Krakauer (an internationally acclaimed musician who combines classical, klezmer, and avant garde styles) and singer Adrienne Cooper (fourth generation in a family of Yiddish singers and well-known for her reinterpretations and performances of Yiddish vocal music). 9. This is a condensed summary of the photographs. 10. In a recent essay about personal narratives, sociologist Gareth Williams (2000, 139) put it like this: “If stories express being-in-the-world, narrative reconstructs not only an individual’s biography but their relationship to their place and history.” 11. Engaging with and subverting family albums is a feminist strategy employed since the 1970s. Well-known examples are by conceptual artist Mary Kelly (1983), photographer Jo Spence (1988), and filmmaker Su Friedrich ([1990] 2005). See also Hirsch 1997. 12. Judith Helfand and Pamela Calvert, “Using A Healthy Baby Girl to Build Community Alliances,” available at http://www.itvs.org/external/babyg/jpcomm.html (accessed August 9, 2008). 13. Philip J. Landrigan, “Reflections on A Healthy Baby Girl,” available at http://www .itvs.org/external/babyg/landriganltr.html (accessed August 8, 2007). At the time his Reflections were posted, Landrigan was chair of the Department of Community Medicine and professor of Environmental Medicine and Pediatrics at the Mount Sinai Medical Center, New York. See also Helfand’s film Blue Vinyl (2002). 14. The second narrative is situated between two stories. It follows a story about the settlement of Judith’s lawsuit against Eli Lilly that ends with a shot of Judith’s parents sitting in a blue Volvo sedan, her father driving along a grassy road under a clear blue sky, accompanied by the sound of peppy accordion music, and Judith’s narration, “But I decided that I could be more effective outside of court. So the last two things that I bought were a good safe car for my parents and, for myself, a better video camera.” Following the eggs story is a bris story. Crowd sounds and the words “mazel tov” accompany the onscreen image of a rabbi arranging surgical instruments and a paper form on a table covered by a tablecloth as Judith narrates offscreen, “My brother and sister-in-law had a beautiful baby boy named Benjamin. Eight days after his birth was the bris, the ritual circumcision followed by a party.” 15. There’s a break in the film here, which I did not notice the first few times I watched it. 16. The first of these meetings is pointed to as the “watershed” moment; subsequent Wingspread Work Sessions were in 1993, 1995, and 1996 (Krimsky 2000, app. A). 17. Colborn cultivated and nurtured a science constituency that helped her develop a deeper scientific understanding of endocrine disruptors and broaden the evidentiary support for her findings. Between 1991 and 1996, she organized six workshops, each of which re-

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sulted in a consensus statement about endocrine disruptors, and in 1996, she published Our Stolen Future (Krimsky 2000, 51–52). 18. The quoted passage is from the Wingspread Statement on the Precautionary Principle, reprinted in its entirety in Steingraber 1998, 284. The Precautionary Principle, which claims an ethical basis for policy in response to a hypothesis of public health risk based on limited and inconclusive evidence, has a long and controversial history. See Steingraber [1997] 1998, Krimsky 2000, Langston 2008, and Cody 2008. 19. Colborn, April 23, 1992, Session #4, Tape 6, Side B. 20. Of the twenty-one scientists who signed the Wingspread Consensus Statement, five gave papers at the 1992 DES Workshop (Bern, Blair, Cunha, Hines, and McLachlan), and an additional person (Colborn) was in attendance at the 1992 DES Workshop. 21. “DES Action Attends World Wildlife Fund Symposium,” DES Action Voice, no. 52 (Spring 1992): 1. See also Cody 2008, chap. 16. 22. The third narrative follows a crisis in the film about Judith’s project and her mother’s participation in it. After Judith’s mother saw footage from the film project for the first time— at a DCN Annual Meeting—she became very upset and at first told Judith to cut her out of the film, because she did not want people to see her in such pain (“I don’t want it, I’m too private a person”), and Judith agreed to do this. Ultimately, however, her mother decided to continue making the film with Judith and to allow her private pain to be shown publicly. The third narrative is followed by a story about a trip to Capitol Hill by a group of activists from the DCN to reinforce the urgent need for research. 23. See Chapter 1, note 31. 24. In early 1992, DES Action sent a mailing to its members asking them to write to their senators and representatives, urging them to support H.R. 4178, because “letters from constituents are crucial at a time when some in Congress are hesitant to support any legislation which calls for spending money (even just $2 million). So if they can point to letters from citizens who need this help, it helps them justify their support for H.R. 4178” (“Notes from Nora,” DES Action Voice, no. 52 [Spring 1992]: 3). Conclusion 1. DES Action Voice, no. 117 (2008). 2. Invitation, “Celebrating 30 Years of Action,” DES Action, n.d. 3. Kari Christenson, Pat Cody, Fay Cohen, Michael Freilick, Andrea Goldstein, Libby Saks, Candy Tedeschi, and Dolores Wallgren. Only half of the honorees attended the event. Cody, Goldstein, Saks, and Wallgren were honored in absentia. 4. Invitation, “Celebrating 30 Years of Action,” DES Action, n.d. 5. Nora Cody, DES Action Voice, no. 115 (Winter 2008): 5. 6. DES Action Voice, no. 115 (Winter 2008): 4–5. In her profile of Aaron Levine, Pat Cody describes him as not only a “pioneer in representing DES daughters in lawsuits” but also so tenacious “in holding the drug companies liable” that he was able to win “settlements totaling $62 million in 342 cases, most of them against Eli Lilly” and instrumental in defining when the statute of limitations starts to run (Cody, DES Action Voice, no. 115 [Winter 2008]: 5). Of Sybil Shainwald, Joyce Bichler—who was represented by Shainwald—writes that she was “co-counsel in the nation’s first ‘DES Daughter’ legal victory” as well as one of the lawyers who represented two thousand women in the Dalkon Shield class-action suit, and she served as chair of the National Women’s Health Network (Bichler, DES Action Voice, no. 115 [Winter 2008]: 5). Beginning with this issue of DES Action Voice, the editors reintroduced its readers “to 30 people who have had a significant impact within the DES com-

198â•…Notes

munity. You have probably heard of many of them, while others have been working quietly behind the scenes, so their names may be new to you. It was not easy winnowing down the long list of friends, supporters and activists who have shared their special talents and energy for our cause. We owe a debt of gratitude to all. We hope you enjoy reading the short profiles, which can’t begin to do justice in explaining the contributions these individuals have made throughout 30 years of activism regarding DES” (4–5). A photograph and short profile written by a member of DES Action accompanied each honoree. The list of honorees, which is still being compiled, includes people from multiple locations, DES activists (mothers, daughters, and a son), physicians, scientists, and attorneys. The list currently includes Pat Cody, Nancy Adess, Arthur L. Herbst, Joyce Bichler, Howard Bern, Aaron Levine, Fran Fishbane, Sidney Wolfe, Sybil Shainwald (DES Action Voice, no. 115 [Winter 2008]); Nora Cody, Libby Saks, John McLachlan, Cynthia Laitman, Candy Tedeschi, Nancy Hersh, Andrea Goldstein, Kenneth Noller (DES Action Voice, no. 116 [Spring 2008]); and Robert Hoover, Retha Newbold, Arthur (Cap) Haney, Patricia Martin Stanford, Michael Freilick, Julie Palmer, Raymond Kaufman, Kari Christianson (DES Action Voice, no. 117 [Summer 2008]). Some of the twenty-five individuals already profiled are prominently featured herein (Nora Cody, Arthur Herbst, John McLachlan, Kari Christianson), and others are identified as participants in the DES embodied health movement cultures of action (Pat Cody, Howard Bern, Aaron Levine, Fran Fishbane, Sidney Wolfe). 7. I decenter DES sons, attorneys, public officials, grandchildren, DES mothers and fathers, and the global dimension of DES. In other words, my narrative approach does not aim to produce a simple or one true story of this embodied health movement, because there is not “a” definitive story to be told. 8. Patti Negri generously gave me a copy of the script, “DES Action Thirtieth Anniversary,” from which all quoted passages are drawn (Patti Negri, “DES Action Thirtieth Anniversary,” Brain Brew Entertainment, 6324 Ivarene Avenue, Hollywood, CA 90068, available at http://www.brainbrewentertainment.com). 9. Wonder Drug is a “scientific drama of how DES harms the lives of a Big Pharma executive, a feminist doctor and a thirtysomething newlywed” (McCarthy 2008, 1). Sir Ralph Dodds, son of Sir Charles Dodds—the biochemist who synthesized DES—and biochemist P. Harry Jellinck, who worked directly under Dodds at the Courtauld Institute of Biochemistry at the Middlesex Hospital, London, are consultants on this project. I reviewed the screenplay for Caitlin and, when we met at the anniversary celebration, I posed with her for a photograph of the two of us.

References

Abu-Lughod, L. 1990. The romance of resistance: Tracing transformations of power through Bedouin women. American Ethnologist 17 (1): 41–55. Anderson, Carolyn. 2006. Autobiography and documentary. In Encyclopedia of the documentary film, vol. 1, ed. Ian Aitken, 67–70. New York: Routledge. Andrews, Molly. 2002. Memories of mother: Counter-narratives of early maternal influence. Narrative Inquiry 12 (1): 7–27. Anonymous. 1986. Announcement. DCN News (1): 6. Anonymous. 1992. Background statement. In National Institutes of Health (NIH), Office of Women’s Health, NIH workshop: Long-term effects of exposure to diethylstilbestrol (DES), 1–8. Bethesda, Md.: U.S. Government Printing Office. Apfel, Roberta J., and Susan E. Bell. 1994. Viewing vaginas: Multiple perspectives on the aftermath of DES cancer. Paper presented to the Eastern Sociological Society, Baltimore, and the DES Cancer Network Annual Meeting, Chicago. Unpublished, 42 pages. Apfel, Roberta J., and Susan M. Fisher. 1984. To do no harm: DES and the dilemmas of modern medicine. New Haven: Yale University Press. Apple, Rima D., ed. 1990. Women, health and medicine in America: A historical handbook. New York: Garland. Atkinson, Paul. 1997. Narrative turn or blind alley? Qualitative Health Research 7 (3): 325– 344. Bamberg, Michael. 2006. Biographic-narrative research, quo vadis? A critical review of “big stories” from the perspective of “small stories.” In Narrative, memory and knowledge: Representations, aesthetics and contexts, ed. Kate Milnes, Christine Horrocks, Nancy Kelly, Brian Roberts, and David Robinson, 1–18. Huddersfield, UK: University of Huddersfield Press. Barnes, Ann B., Theodore Colton, Jerome Gundersen, Kenneth L. Noller, Barbara C. Tilley, Thomas Strama, et al. 1980. Fertility and outcome of pregnancy in women exposed in utero to diethylstilbestrol. New England Journal of Medicine 302 (11): 609–613. Baxter, Judith, ed. 2006. Speaking out: The female voice in public contexts. London: Palgrave Macmillan.

200â•…References

Becker, Gay. 2000. The elusive embryo: How women and men approach new reproductive technologies. Berkeley: University of California Press. Becker, Gay, and Robert D. Nachtigall. 1994. “Born to be a mother”: The cultural construction of risk in infertility treatment in the U.S. Social Science and Medicine 39 (4): 507–518. Becker, Howard S. 2000. What should sociology look like in the (near) future? Contemporary Sociology 29 (2): 333–336. Behar, Ruth. 1991. The body in the woman, the story in the woman: A book review and personal essay. In The female body, ed. L. Goldstein, 267–311. Ann Arbor: University of Michigan Press. ———. 1993. Translated woman: Crossing the border with Esperanza’s story. Boston: Beacon. ———. 1996. The vulnerable observer: Anthropology that breaks your heart. Boston: Beacon. Behar, Ruth, and Deborah A. Gordon, eds. 1995. Women writing culture. Berkeley: University of California Press. Bell, Susan E. 1980. The synthetic compound diethylstilbestrol (DES) 1938–1941: The social construction of a medical treatment. Unpublished Ph.D. diss., Brandeis University. ———. 1986. A new model of medical technology development: A case study of DES. Research in the Sociology of Health Care 4:1–32. ———. 1987. Changing ideas: The medicalization of menopause. Social Science and Medicine 24 (6): 535–542. ———. 1988. Becoming a political woman: The reconstruction and interpretation of experience through stories. In Gender and discourse: The power of talk, ed. Alexandra Dundas Todd and Sue Fisher, 97–123. Norwood, N.J.: Ablex. ———. 1989. Technology in medicine: Development, diffusion, and health policy. In Handbook of medical sociology, 4th ed., ed. Howard E. Freeman and Sol Levine, 185– 204. Englewood Cliffs, N.J.: Prentice Hall. ———. 1994. Translating science to the people: Updating The new our bodies, ourselves. Women’s Studies International Forum 17 (1): 9–18. ———. 1995. Gendered medical science: Producing a drug for women. Feminist Studies 21 (3): 469–500. ———. 1999. Narratives and lives: Women’s health politics and the diagnosis of cancer for DES daughters. Narrative Inquiry 9 (2): 347–389. ———. 2000. Experiencing illness in/and narrative. In Handbook of medical sociology, 5th ed., ed. Chloe E. Bird, Peter Conrad, and Allen M. Fremont, 184–199. Upper Saddle Hill, N.J.: Prentice-Hall. ———. 2002. Photo images: Jo Spence’s narratives of living with illness. health 6 (1): 5–30. ———. 2003. Sexual synthetics: Women, science, and microbicides. In Synthetic planet: Chemical politics and the hazards of modern life, ed. Monica Casper, 197–211. New York: Routledge. ———. 2004. Intensive performances of mothering: A sociological perspective. Qualitative Research 4 (1): 45–75. Bell, Susan E., and Roberta J. Apfel. 1995. Looking at bodies: Insights and inquiries about DES-related cancer. Qualitative Sociology 18:3–19. Bell, Susan E., and Susan M. Reverby. 2005. Vaginal politics: Tensions and possibilities in The Vagina Monologues. Women’s Studies International Forum 28 (5): 430–444. Bern, Howard A., and Arthur L. Herbst, eds. 1981. Present problems and future concerns. In Developmental effects of diethylstilbestrol (DES) in pregnancy, 194–198. New York: Thieme-Stratton.

Referencesâ•… 201

Beyette, Beverly. 1994. Private pain—and a public healing. Los Angeles Times, June 3, Around Town section, pp. B1, B12. Bichler, Joyce. 1981. DES daughter: The Joyce Bichler story. New York: Avon. Boston Women’s Health Book Collective. 1998. Our bodies, ourselves for the new century: A book by and for women. New York: Simon and Schuster. ———. 2005. Our bodies, ourselves: A new edition for a new era. New York: Simon and Schuster. Bouscaren, T. Lincoln, and Adam C. Ellis. 1957. Canon law: A text and commentary. 3rd rev. ed. Milwaukee: Bruce Publishing. Boylan, Jennifer Finney. 2003. She’s not there: A life in two genders. New York: Broadway Books. Braun, Margaret Lee. 2001. DES stories: Faces and voices of people exposed to diethylstilbestrol. Rochester, N.Y.: Visual Studies Workshop. Brown, Phil, and Stephen Zavestoski. 2004. Social movements in health: An introduction. Sociology of Health and Illness 26 (6): 679–694. Brown, Phil, Stephen Zavestoski, Sabrina McCormick, Brian Mayer, Rachel Morello-Frosh, and Rebecca Gasior Altman. 2004. Embodied health movements: New approaches to social movements in health. Sociology of Health and Illness 26 (1): 50–80. Cahill, Lisa Sowle. 1989. Catholic sexual ethics and the dignity of the person: A double message. Theological Studies 50:120–150. Cameron, Deborah. 2006. Theorising the female voice in public contexts. In Speaking out: The female voice in public contexts, ed. Judith Baxter, 3–20. Basingstoke, UK: Palgrave Macmillan. Cassell, Joan. 2000. The woman in the surgeon’s body. Cambridge, Mass.: Harvard University Press. Catholic University of America Staff. 2003. New Catholic encyclopedia. Washington, D.C.: Catholic University of America. Centers for Disease Control (CDC). 2003. DES Update—Health Risks for DES Sons. Teleconference. September 17. Available at http://www.cdc.gov/des/consumers/tele/index. html. Accessed July 24, 2007. Chambliss, Daniel. 1996. Beyond caring: Hospitals, nurses, and the social organization of ethics. Chicago: University of Chicago Press. Chase, Susan E., and Mary F. Rogers. 2001. Mothers and children: Feminist analyses and personal narratives. New Brunswick, N.J.: Rutgers University Press. Christianson, Kari, and Amanda Sherman. 1995. Childless or childfree: Decisionmaking for a lifetime. DES Action Voice (63): 1, 7–8. Clarke, Adele E., Laura Mamo, Jennifer R. Fishman, Janet K. Shim, and Jennifer Ruth Fosket. 2003. Biomedicalization: Technoscientific transformations of health, illness, and U.S. biomedicine. American Sociological Review 68 (2): 161–194. Clarke, Adele E., and Virginia L. Olesen. 1999. Revising, diffracting, acting. In Revisioning women, health, and healing: Feminist, cultural, and technoscience perspectives, ed. A. E. Clarke and V. L. Olesen, 3–48. New York: Routledge. Clarke, Adele E., Janet Shim, Laura Mamo, Jennifer Fosket, and Jennifer Fishman. 2009. Biomedicalization: A theoretical and substantive introduction. In Biomedicalization: Technoscience and transformations of health and illness in the U.S., ed. A. E. Clarke, Janet Shim, Laura Mamo, Jennifer Fosket, and Jennifer Fishman. Durham, N.C.: Duke University Press. Forthcoming. Cody, Nora. 1999. DES Action honors four outstanding scientists. DES Action Voice (81): 3.

202â•…References

Cody, Pat. 1988. Ten years of DES Action looking back—and ahead. DES Action Voice (37): 1, 3–5. ———. 2008. DES voices: From anger to action. Columbus, Ohio: DES Action. Colborn, Theo. 2001. Foreword. In DES stories: Faces and voices of people exposed to diethylstilbestrol, ed. M. L. Braun, ix–x. Rochester, N.Y.: Visual Studies Workshop. Colborn, Theo, Dianne Dumanoski, and John Peterson Myers. 1996–1997. Our stolen future: Are we threatening our fertility, intelligence, and survival? A scientific detective story. New York: Penguin. Cousins, Larry. 1980. Cervical incompetence, 1980: A time for reappraisal. Clinical Obstetrics and Gynecology 23 (2): 467–479. Creef, Elena Tajima. 2004. Imaging Japanese America: The visual construction of citizenship, nation, and the body. New York: New York University Press. D’Antonio, William V., James D. Davidson, Dean R. Hoge, and Katherine Meyer. 2001. American Catholics: Gender, generation, and commitment. Walnut Creek, Calif.: AltaMira Press. Davis, Kathy. 1995. Reshaping the female body: The dilemmas of cosmetic surgery. New York: Routledge. ———. 2007. The making of Our Bodies, Ourselves: How feminist knowledge travels across borders. Durham, N.C.: Duke University Press. Davis, Kathy, and Sue Fisher. 1993. Power and the female subject. In Negotiating at the margins: The gendered discourses of power and resistance, ed. Sue Fisher and Kathy Davis, 3–20. New Brunswick, N.J.: Rutgers University Press. Davis, Simone Weil. 2002. Loose lips sink ships. Feminist Studies 28 (1): 7–35. Davis-Floyd, Robbie, and Joseph Dumit, eds. 1998. Cyborg babies: From techno-sex to technotots. New York: Routledge. Delmar, Rosalind. 1986. What is feminism? In What is feminism? ed. Juliet Mitchell and Ann Oakley, 8–33. New York: Pantheon. Dieckmann, W. J., M. E. Davis, L. M. Rynkiewicz, and R. E. Pottinger. 1953. Does the administration of diethylstilbestrol used during pregnancy have therapeutic value? American Journal of Obstetrics and Gynecology 65:592–601. Direcks, Anita. 1986. Has the DES lesson been learned? DES Action Voice (28): 1–2, 4. Duke, Suzanne S., Sarah A. McGraw, Nancy E. Avis, and Amanda Sherman. 2000. A focus group study of DES daughters: Implications for health care providers. Psycho-Oncology 9:439–444. Dumit, Joseph, with Sylvia Sensiper. 1998. Living with the “truths” of DES. In Cyborg babies: From techno-sex to techno-tots, ed. Robbie Davis-Floyd and Joseph Dumit, 212–239. New York: Routledge. Dutton, Diana Barbara. 1988. Worse than the disease: Pitfalls of medical progress. Cambridge: Cambridge University Press. Edozien, L. C. 1992. The incompetent cervix—a review. British Journal of Clinical Practice 46 (4): 264–267. Ehrenreich, Barbara, and Deirdre English. 1973a. Complaints and disorders; the sexual politics of sickness. Old Westbury, N.Y.: Feminist Press. ———. 1973b. Witches, midwives, and nurses: A history of women healers. Old Westbury, N.Y.: Feminist Press. Emery, Joan. 1990. DES glossary. DES Action Voice (44): 4–5. Ensler, Eve. 2001. The vagina monologues. V-day ed. New York: Villard. Epstein, Steven. 1996. Impure science: AIDS, activism, and the politics of knowledge. Berkeley: University of California Press. ———. 2000. Democracy, expertise, and AIDS treatment activism. In Science, technology and democracy, ed. D. L. Kleinman, 15–32. Albany: State University of New York Press.

Referencesâ•… 203

———. 2008. Patient groups and health movements. In The handbook of science and technology studies, 3rd ed., ed. E. J. Hackett, Olga Amsterdamska, Michael Lynch, and Judy Wajcman, 499–539. Cambridge, Mass.: MIT Press. Erikson, Kai. 1994. A new species of trouble: Explorations in disaster, trauma, and community. New York: Norton. Estroff, Sue E. 1995. Whose story is it anyway? Authority, voice, and responsibility in narratives of chronic illness. In Chronic illness: From experience to policy, ed. S. Kay Toombs, David Barnard, and R. A. Carson, 77–102. Bloomington: Indiana University Press. Ferguson, James Henry. 1953. Effects of stilbestrol compared to effect of a placebo. American Journal of Obstetrics and Gynecology 65:592–601. Ferree, Myra Marx, and Patricia Yancey Martin, eds. 1995. Feminist organizations: Harvest of the new women’s movement. Philadelphia, Pa.: Temple University Press. Fisher, Brandy E. 1999. An environment for development. Environmental Health Perspectives 107 (6): A298–A300. Food and Drug Administration (FDA). 1971. Drug bulletin: Diethylstilbestrol contraindicated in pregnancy. Washington, D.C.: U.S. Department of Health, Education, and Welfare. Foucault, Michel. 1978. The history of sexuality. Vol. 1. New York: Vintage. ———. 1980. Power/Knowledge: Selected interviews and other writings 1972–1977. New York: Pantheon. Fox, H. A. 1983. The incompetent cervix: Words that can hurt. Communications in brief. American Journal of Obstetrics and Gynecology 147 (4): 462–463. Frank, Arthur W. 1991. At the will of the body: Reflections on illness. New York: Houghton Mifflin. ———. 1995. The wounded storyteller: Body, illness, and ethics. Chicago: University of Chicago Press. Franklin, Sarah. 1997. Embodied progress: A cultural account of assisted conception. London: Routledge. Friedrich, Su. [1990] 2005. Sink or swim. Video-recording. New York: Outcast Films. Georgakopoulou, Alexandra. 2006. Thinking big with small stories in narrative and identity analysis. Narrative Inquiry 16 (1): 122–130. Giusti, Ruthann M., Kumiko Iwamoto, and Elizabeth E. Hatch. 1995. Diethylstilbestrol revisited: A review of the long-term health effects. Annals of Internal Medicine 122 (10): 778–788. Glenn, Evelyn N. 1994. Social constructions of mothering: A thematic overview. In Mothering: Ideology, experience, and agency, ed. E. N. Glenn, Grace Chang, and L. R. Forcey, 1–29. New York: Routledge. Goldberg, Jeffrey. n.d. DES update: Current information. Grand Rounds Presentation. Developed in collaboration with CDC, Centers of Excellence in Women’s Health (U.S. DHHS) for CDC’s DES Update, 93 pages. Available at http://www.cdc.gov/des/hcp/ resources/materials/des_grandrounds_print.pdf (accessed July 15, 2007). Goldstein, Andrea. 1989. When is enough enough? DES Action Voice (39): 1, 4. Hamblen, E. C. 1941. Diethylstilbestrol commercially available. Journal of Clinical Endocrinology 1:928–929. Haraway, Donna J. [1985] 1991. A cyborg manifesto: Science, technology, and socialistfeminism in the late twentieth century. In Simians, cyborgs, and women: The reinvention of nature, ed. D. J. Haraway, 149–181. New York: Routledge. ———. 1988. Situated knowledges: The science question in feminism and the privilege of partial perspective. Feminist Studies 14:575–599. ———. 1999. The virtual speculum in the new world order. In Revisioning women, health, and healing: Feminist, cultural, and technoscience perspectives, ed. A. E. Clarke and V. L. Olesen, 49–96. New York: Routledge.

204â•…References

Harper, Douglas. 2000. Reimagining visual methods. In Handbook of qualitative research, 2nd ed., ed. Norman K. Denzin and Yvonne S. Lincoln, 717–732. Thousand Oaks, Calif.: Sage. ———. 2005. What’s new visually? In Handbook of qualitative research, 3rd ed., ed. Norman K. Denzin and Yvonna S. Lincoln, 747–762. Thousand Oaks, Calif.: Sage. Harrison, Barbara. 2002. Photographic visions and narrative inquiry. Narrative Inquiry 12 (1): 87–111. Hatch, E. E., J. R. Palmer, Linda Titus-Ernstoff, K. L. Noller, R. H. Kaufman, Robert Mittendorf, et al. 1998. Cancer risk in women exposed to diethylstilbestrol in utero. Journal of the American Medical Association 280 (7): 630–634. Haynes, S. G. 1992. Demographic characteristics of DES callers to the NCI Cancer Information Service. In National Institutes of Health (NIH), Office of Women’s Health, NIH workshop: Long-term effects of exposure to diethylstilbestrol (DES), 56–59. Bethesda, Md.: U.S. Government Printing Office. Hays, Sharon. 1996. The Cultural Contradictions of Motherhood. New Haven, Conn.: Yale University Press. Helfand, Judith. 1996. A healthy baby girl. New York: Women Make Movies. Helfand, Judith, and Daniel Gold. 2002. Blue vinyl. Toxic Comedy Pictures. Helmrich, Susan. 1997. A DES research update and thank you. DCN News (Spring): 3. Hendrickson, Gail. 2004. Incompetent cervix. Discoveryhealth.com. Available at http://health. discovery.com/diseasesandcond/encyclopedia/2047.html. Accessed May 20, 2004. Herbst, Arthur L. 1981. The epidemiology of vaginal and cervical clear cell adenocarcinoma. In Developmental effects of diethylstilbestrol (DES) in pregnancy, ed. A. L. Herbst and H. A. Bern, 63–70. New York: Thieme-Stratton. ———. 2000. Behavior of estrogen-associated female genital tract cancer and its relation to neoplasia following intrauterine exposure to diethylstilbestrol (DES). Distinguished Professor Series. Gynecologic Oncology 76:147–156. Herbst, Arthur L., and Diane Anderson. 1981. Clinical correlations and management of vaginal and cervical clear cell adenocarcinoma. In Developmental effects of diethylstilbestrol (DES) in pregnancy, ed. A. L. Herbst and H. A. Bern, 71–80. New York: ThiemeStratton. Herbst, Arthur L., and Howard Bern, eds. 1981. Developmental effects of diethylstilbestrol (DES) in pregnancy. New York: Thieme-Stratton. Herbst, Arthur L., and Philip Cole. 1978. Epidemiologic and clinical aspects of clear cell adenocarcinoma in young women. In Intrauterine exposure to diethylstilbestrol in the human: Proceedings of “symposium on DES,” 1977, ed. A. L. Herbst, 2–7. Chicago: American College of Obstetricians and Gynecologists. Herbst, Arthur L., M. J. Norusis, P. J. Rosenow, W. R. Welch, and R. E. Scully. 1979. An analysis of 346 cases of clear cell adenocarcinoma of the vagina and cervix with emphasis on recurrence and survival. Gynecological Oncology 7:111–122. Herbst, Arthur L., and Robert E. Scully. 1970. Adenocarcinoma of the vagina in adolescence: A report of 7 cases including 6 clear cell carcinomas (so-called mesonephromas). Cancer 25:745–757. Herbst, Arthur L., Howard Ulfelder, and D. C. Poskanzer. 1971. Adenocarcinoma of the vagina: Association of maternal stilbestrol therapy with tumor appearance in young women. New England Journal of Medicine 284:878–881. Herrmann, Anne C., and Abigail J. Stewart, eds. 1994. Theorizing feminism: Parallel trends in the humanities and social sciences. Boulder, Colo.: Westview. Hertz, Rosanna, and Susan M. Reverby. 1995. Gentility, gender, and political protest: The Barbara Bush controversy at Wellesley College. Gender and Society 9 (5): 594–611.

Referencesâ•… 205

Hinchman, Lewis P., and Sandra K. Hinchman, eds. 1997. Memory, identity, community: The idea of narrative in the human sciences. Albany: State University of New York Press. Hirsch, Marianne. 1997. Family frames: photography, narrative, and postmemory. Cambridge, Mass.: Harvard University Press. Houck, Judith A. 2006. Hot and bothered: Women, medicine, and menopause in modern America. Cambridge, Mass.: Harvard University Press. Hydén, Lars-Christer. 1997. Illness and narrative. Sociology of Health and Illness 19 (1): 48–69. Ibarreta, Dolores, and Shanna H. Swan. 2001. The DES story: Long-term consequences of prenatal exposure. In Late lessons from early warnings: The precautionary principle 1896– 2000, Environmental Issue Report No. 22, ed., Paul Harremos, David Gee, Malcolm MacGarvin, Andy Stirling, Jane Keys, Brian Wynne, and Sofia Guedes Vaz, 84–92. Luxembourg: European Environment Agency, Office for Official Publications of the European Communities. Inhorn, Marcia C. 2003. Global infertility and the globalization of new reproductive technologies: Illustrations from Egypt. Social Science and Medicine 56:1837–1851. ———. 2006. Defining women’s health: A dozen messages from more than 150 ethnographies. Medical Anthropology Quarterly 20 (3): 345–378. Jenkins, Gwynne L., and Marcia C. Inhorn. 2003. Reproduction gone awry: Medical anthropological perspectives. Social Science and Medicine 56:1831–1836. Jolly, Margaretta, and Liz Stanley. 2005. Letters as/not a genre. Life Writing 2 (2): 75–101. Kapsalis, Terri. 1997. Public privates: Performing gynecology from both ends of the speculum. Durham, N.C.: Duke University Press. Kaufman, Raymond H., Ervin Adam, Elizabeth E. Hatch, Kenneth Noller, Arthur L. Herbst, Julie R. Palmer, and Robert N. Hoover. 2000. Continued follow-up of pregnancy outcomes in diethylstilbestrol-exposed offspring. Obstetrics and Gynecology 96 (4): 483–489. Kelly, Mary. 1983. Post-partum document. London: Routledge and Kegan Paul. Klawiter, Maren. 2003. Chemicals, cancer, and prevention: The synergy of synthetic social movements. In Synthetic planet: Chemical politics and the hazards of modern life, ed. M. J. Casper, 155–175. New York: Routledge. ———. 2004. Breast cancer in two regimes: The impact of social movements on illness experience. Sociology of Health and Illness 26 (6): 845–874. Klein, Kim. 1983–1984. Infertility: One couple’s story. Book review. DES Action Voice 5 (3): 2. Kline, Wendy. 2005. “Please include this in your book”: Readers respond to Our Bodies, Ourselves. Bulletin of the History of Medicine 79:81–110. Kols, Adrienne, and Tuong Nguyen. 1997. Infertility in developing countries. Outlook 15 (3): 1–8. Available from PATH, 1455 NW Leary Way, Seattle, WA 98107; as a digital file, available at http://www.path.org/publications/pub.php?id=359. Accessed March 24, 2004. Kosnik, Anthony, William Carroll, Agnes Cunningham, Ronald Modras, and James Schulte. 1977. Human sexuality: New directions in American Catholic thought. A Study Commissioned by the Catholic Theological Society of America. New York: Paulist Press. Krimsky, Sheldon. 2000. Hormonal chaos: The scientific and social origins of the environmental endocrine hypothesis. Baltimore: Johns Hopkins University Press. Kuhlmann, Ellen, and Birgit Babitsch. 2002. Bodies, health, gender—bridging feminist theories and women’s health. Women’s Studies International Forum 25:433–442. Labarthe, Darwin, Ervin Adam, K. L. Noller, P. C. O’Brien, S. J. Robboy, B. C. Tilley, Duane Townsend, et al. 1978. Design and preliminary observations in the National Cooperative Diethylstilbestrol Adenosis (DESAD) project. Obstetrics and Gynecology 51:453–458.

206â•…References

Labov, William, ed. 1972. The transformation of experience in narrative syntax. In Language in the inner city: Studies in the black English vernacular, 219–247. Philadelphia: University of Pennsylvania Press. ———. 1982. Speech actions and reactions in personal narrative. In Analyzing discourse: Text and talk, ed. Deborah Tannen, 354–396. Washington, D.C.: Georgetown University Press. Labov, William, and Joshua Waletzky. 1967. Narrative analysis: Oral versions of personal experience. In Essays on the verbal and visual arts, ed. June Helms, 12–44. Seattle: University of Washington Press. Laitman, Cynthia J. 2002. DES exposure and the aging woman: Mothers and daughters. Current Women’s Health Reports 2:390–393. Lane, Jim. 2002. The autobiographical documentary in America. Madison: University of Wisconsin Press. Langellier, Kristin M. 1989. Personal narratives: Perspectives on theory and research. Text and Performance Quarterly 9:243–276. ———. 2001a. Personal narrative. In Encyclopedia of life writing: Autobiographical and biographical forms, vol. 2, ed. Margaretta Jolly, 699–701. London: Fitzroy Dearborn Publishers. ———. 2001b. “You’re marked”: Breast cancer, tattoo and the narrative performance of identity. In Narrative and identity: Studies in autobiography, self, and culture, ed. Jens Brockmeier and Donal Carbaugh, 145–184. Amsterdam: John Benjamins. Langellier, Kristin M., and Eric E. Peterson. 2004. Storytelling in daily life: Performing narrative. Philadelphia: Temple University Press. Langston, Nancy. 2008. The retreat from precaution: Regulating diethylstilbestrol (DES), endocrine disruptors, and environmental health. Environmental History 13:41–65. Layne, Linda L. 2003. Motherhood lost: A feminist account of pregnancy loss in America. New York: Routledge. Leech, Paul N. 1939. Stilbestrol: Preliminary report of the Council [on Pharmacy and Chemistry]. Journal of the American Medical Association 113 (26): 2312. Letherby, Gayle, and Catherine Williams. 1999. Non-motherhood: Ambivalent autobiographies. Feminist Studies 25 (3): 719–728. Lock, Margaret M. 1993. Encounters with aging: Mythologies of menopause in Japan and North America. Berkeley: University of California Press. ———. 2002. Twice dead: Organ transplants and the reinvention of death. Berkeley: University of California Press. Lupton, Deborah. 1997. Consumerism, reflexivity and the medical encounter. Social Science and Medicine 45 (3): 373–381. Mansbridge, Jane. 1995. What is the feminist movement? In Feminist organizations: Harvest of the new women’s movement, ed. M. M. Ferree and P. Y. Martin, 27–34. Philadelphia: Temple University Press. Martin, Emily. 1987. The woman in the body: A cultural analysis of reproduction. Boston: Beacon Press. ———. 1994. Flexible bodies: Tracking immunity in American culture from the days of polio to the age of AIDS. Boston: Beacon Press. Mattingly, Cheryl, and Linda G. Garro. 1994. Introduction. Social Science and Medicine 38 (6): 771–774. ———. 2000. Narrative and the cultural construction of illness and healing. Berkeley: University of California Press. Mattingly, Kristie. 1989. Which is incompetent, cervix or terminology? DES Action Voice, no. 39 (Winter): 7. Reprint from Resolve National Newsletter, June 1988. Mazer, Charles, S. Leon Israel, and Elkin Ravetz. 1941. The synthetic estrogen stilbestrol:

Referencesâ•… 207

An experimental and clinical evaluation. Journal of the American Medical Association 116 (8): 675–681. McCarthy, Caitlin. 2008. Screenplay about DES gets rave reviews. DES Action Voice, no. 115 (Winter): 1, 3. McGrory, Mary. 1992. The lingering pain of DES. Washington Post, April 23, p. A2. McLachlan, John A. 2006. Commentary: Prenatal exposure to diethylstilbestrol (DES): A continuing story. International Journal of Epidemiology 35:868–870. Mills, C. Wright. 1959. The sociological imagination. New York: Oxford University Press. Mishler, Elliot G. 1984. The discourse of medicine: Dialectics of medical interviews. Norwood, N.J.: Ablex. ———. 1986. Research interviewing: Context and narrative. Cambridge, Mass.: Harvard University Press. ———. 1999. Storylines: Craftartists’ narratives of identity. Cambridge, Mass.: Harvard University Press. Morgen, Sandra. 2002. Into our own hands: The women’s health movement in the United States. New Brunswick, N.J.: Rutgers University Press. Murphy, Michelle. 2004. Immodest witnessing: The epistemology of vaginal self-examination in the U.S. feminist self-help movement. Feminist Studies 30 (1): 115–147. National Cancer Institute (NCI). 2001. A DES Research Update. Report of the DES Follow-up Study from the National Cancer Institute. Spring/Summer. Available at http:// www.desfollowupstudy.org. Accessed July 24, 2007. National Center for Health Statistics. 2003. National Vital Statistics Reports 52 (December 17): 10 (table 39). Available at http://www.cdc.gov/nchs/fastats/delivery.htm. Accessed December 1, 2004. National Institutes of Health (NIH), Office of Women’s Health. 1992. NIH workshop: Longterm effects of exposure to diethylstilbestrol (DES). Bethesda, Md.: U.S. Government Printing Office. Newbold, Retha R. 2008. Prenatal exposure to diethylstilbestrol (DES). Fertility and Sterility 89 (Supp. 1): e55–e56. Noller, Kenneth L., Duane E. Townsend, and Raymond H. Kaufman. 1981. Genital findings, colposcopic evaluation, and current management of the diethylstilbestrol-exposed female. In Developmental effects of diethylstilbestrol (DES) in pregnancy, ed. A. L. Herbst and H. A. Bern, 81–102. New York: Thieme-Stratton. Norsigian, Judy. 1996. The women’s health movement in the United States. In Man-made medicine: Women’s health, public policy, and reform, ed. K. L. Moss, 79–97. Durham, N.C.: Duke University Press. Norsigian, Judy, and Wendy C. Sanford. 1987. Ten years in the “Our Bodies, Ourselves” collective. Women and Therapy 61:287–292. Novack, Dennis H., Robin Plumer, Raymond L. Smith, Herbert Ochitill, Gary R. Morrow, and John M. Bennett. 1979. Changes in physicians’ attitudes toward telling the cancer patient. Journal of the American Medical Association 241 (9): 897–900. Oken, Donald. 1961. What to tell cancer patients: A study of medical attitudes. Journal of the American Medical Association 175 (3): 1120–1128. Orenberg, Cynthia Laitman. 1981. DES: The complete story. New York: St. Martin’s. Ortner, S. B. 1995. Resistance and the problem of ethnographic refusal. Comparative Studies in Society and History 37 (1): 173–193. Oudshoorn, Nelly. 1994. Beyond the natural body: An archeology of sex hormones. New York: Routledge. Palmer, Julie R., Elizabeth E. Hatch, R. Sowmya Rao, Raymond H. Kaufman, Arthur L. Herbst, Kenneth L. Noller, Linda Titus-Ernstoff, and Robert N. Hoover. 2001. Infertil-

208â•…References

ity among women exposed prenatally to diethylstilbestrol. American Journal of Epidemiology 154 (4): 316–321. Palmer, Julie R., Lauren A. Wise, Elizabeth E. Hatch, Rebecca Troisi, Linda Titus-Ernstroff, William Strohsnitter, et al. 2006. Prenatal diethylstilbestrol exposure and risk of breast cancer. Cancer Epidemiology Biomarkers and Prevention 15 (8): 1509–1514. Paul VI. 1968. Humanae vitae: Encyclical of Pope Paul VI on the regulation of birth. July 25. Available at http://www.vatican.va/holy_father/paul_vi/encyclicals/documents/hf_pvi_enc_25071968_humanae-vitae_en.html. Accessed August 23, 2004. Personal Narratives Group. 1989. Interpreting women’s lives: Feminist theory and personal narratives. Bloomington: Indiana University Press. Picoult, Darci. 1991 (copyright). My Virginia. For all rights of performance or reproduction, contact Beth Blickers at Abrams Artists Agency, 275 Seventh Avenue, 26th Floor, New York, NY 10001. ———. 1994. A DES daughter educates women about the pregnancy wonder drug. New York Times Syndicate, “Women in the Arts Speak Out” column. Pinn, Vivian W., and Mary T. Chunko. 1999. The NIH Office of Research on Women’s Health and its DHHS partners: Meeting challenges in women’s health. Journal of the American Medical Women’s Association 54 (1): 15–19. Pitts-Taylor, Victoria. 2007. Surgery junkies: Wellness and pathology in cosmetic culture. New Brunswick, N.J.: Rutgers University Press. Polletta, Francesca. 2006. It was like a fever: Storytelling in protest and politics. Chicago: University of Chicago Press. Rabinow, Paul, and Nikolas Rose. 2006. Biopower today. BioSocieties 1:195–217. Radley, Alan. 2002. Portrayals of suffering: On looking away, looking at, and the comprehension of illness experience. Body and Society 8:1–23. Radley, Alan, and Susan E. Bell. 2007. Artworks, collective experience, and claims for social justice: The case of women living with breast cancer. Sociology of Health and Illness 29 (3): 366–390. Rapp, Rayna. 1999a. One new reproductive technology, multiple sites: How feminist methodology bleeds into everyday life. In Revisioning women, health, and healing: Feminist, cultural and technoscience perspectives, ed. A. E. Clarke and V. L. Olesen, 119–135. New York: Routledge. ———. 1999b. Testing women, testing the fetus: The social impact of amniocentesis in America. New York: Routledge. Reinharz, Shulamit, with the assistance of Lynn Davidman. 1992. Feminist methods in social research. New York: Oxford University Press. Renov, Michael. 1999. Domestic ethnography and the construction of the “other” self. In Collecting visible evidence, ed. Jane M. Gaines and Michael Renov, 140–155. Minneapolis: University of Minnesota Press. Riessman, Catherine Kohler. 1983. Women and medicalization: A new perspective. Social Policy 14 (1): 3–18. ———. 1993. Narrative analysis. Newbury Park, Calif.: Sage. ———. 2002. Analysis of personal narratives. In Handbook of interview research: Context and method, ed. Jaber F. Gubrium and James A. Holstein, 695–710. Thousand Oaks, Calif.: Sage. ———. 2008. Narrative methods for the human sciences. Thousand Oaks, Calif.: Sage. Robboy, Stanley J., Wanda M. Szyfelbein, John R. Goellner, Raymond H. Kaufman, Priscilla D. Taft, Ralph M. Richard, et al. 1981. Dysplasia and cytologic findings in 4,589 young women enrolled in Diethylstilbestrol-Adenosis (DESAD) Project. American Journal of Obstetrics and Gynecology 140 (5): 579–586.

Referencesâ•… 209

Robboy, Stanley J., W. R. Welch, R. H. Young, G. Y. Truslow, A. L. Herbst, and R. E. Scully. 1982. Topographic relation of cervical ectropion and vaginal adenosis to clear cell adenocarcinoma. Obstetrics and Gynecology 60 (5): 546–551. Robboy, Stanley J., Robert H. Young, and Arthur L. Herbst. 1982. Female genital tract changes related to prenatal diethylstilbestrol exposure. In Pathology of the female genital tract, ed. Ancel U. Blaustein, 99–118. New York: Springer-Verlag. Ruzek, Sheryl Burt, and Julie Becker. 1999. The women’s health movement in the United States: From grass-roots activism to professional agendas. Journal of the American Medical Women’s Association 54 (1): 4–9. Schiffrin, Deborah. 1987. Discourse markers. New York: Cambridge University Press. Schmidt, G., and W. C. Fowler, Jr. 1980. Cervical stenosis following minor gynecologic procedures on DES-exposed women. Obstetrics and Gynecology 56 (3): 333–335. Scott, Joan. 1991. Experience. Critical Inquiry 17:773–797. Scully, Robert E., and William R. Welch. 1981. Pathology of the female genital tract after prenatal exposure to diethylstilbestrol. In Developmental effects of diethylstilbestrol (DES) in pregnancy, ed. A. L. Herbst and H. A. Bern, 26–45. New York: Thieme-Stratton. Seaman, Barbara. 1969. The doctor’s case against the pill. New York: Wyden. Seaman, Barbara, and Gideon Seaman. 1977. Women and the crisis in sex hormones. New York: Bantam. Shorr, Ephraim, Frank H. Robinson, and George N. Papanicolaou. 1939. A clinical study of the synthetic estrogen stilbestrol. Journal of the American Medical Association 113 (26): 2312–2318. Smith, Olive W. 1948. Diethylstilbestrol in the prevention and treatment of complications of pregnancy. American Journal of Obstetrics and Gynecology 56 (5): 821–834. Smith, Olive W., and George Van S. Smith. 1949. The influence of diethylstilbestrol on the progress and outcome of pregnancy based on a comparison of treated with untreated primigravidas. American Journal of Obstetrics and Gynecology 58 (5): 994–1009. Smith, Olive W., George Van S. Smith, and David Hurwitz. 1946. Increased excretion of pregnanediol in pregnancy from diethylstilbestrol with special reference to the prevention of late pregnancy accidents. American Journal of Obstetrics and Gynecology 51:411– 415. Spence, Jo. 1988. Putting myself in the picture: A political, personal, and photographic autobiography. Seattle: Real Comet Press. Spence, Jo, and Ros Coward. 1986. Body talk? A dialogue between Ros Coward and Jo Spence. In Photography/Politics: Two, ed. Patricia Holland, Jo Spence, and Simon Watney, 24–39. London: Comedia. SRI International. 1978. Cancer control monograph: Diethylstilbestrol. SRI International Project 4418. Cary L. Young, M.D., Monograph Manager. Bethesda, Md.: Center for Occupational and Environmental Safety and Health. Stacey, Jackie. 1997. Teratologies: A cultural study of cancer. London: Routledge. Stanley, Liz. 2004. The epistolarium: On theorizing letters and correspondences. Auto/Biography 12:201–235. Steingraber, Sandra. [1997] 1998. Living downstream: A scientist’s personal investigation of cancer and the environment. New York: Vintage Books. Stillman, R. J. 1982. In utero exposure to diethylstilbestrol: Adverse effects on the reproductive performance of male and female offspring. American Journal of Obstetrics and Gynecology 142 (7): 905–921. Swan, Shanna H. 2000. Intrauterine exposure to diethylstilbestrol: Long-term effects in humans. Review article. Acta Pathologica, Microbiologica et Immunologica Scandinavica (APMIS) 108:793–804.

210â•…References

Sze, Julie. 2006. Boundaries and border wars: DES, technology, and environmental justice. American Quarterly 58:791–814. ’t Hoen, Ellen. 1989. Choosing non-parenthood. DES Action Voice (41): 1, 4. Throsby, Karen. 2004. Negotiating “normality” when IVF fails. In Considering counternarratives: Narrating, resisting, making sense, ed. Michael Bamberg and Molly Andrews, 61–82. Amsterdam: John Benjamins. Timmermans, Stefan, and Marc Berg. 2003. The gold standard: The challenge of evidence-based medicine and standardization in health care. Philadelphia: Temple University Press. Titus-Ernstoff, Linda, Kimberly Perez, E. E. Hatch, Rebecca Troisi, J. R. Palmer, Patricia Hartge, et al. 2003. Psychosexual characteristics of men and women exposed prenatally to diethylstilbestrol. Epidemiology 14:155–160. Titus-Ernstoff, Linda, Rebecca Troisi, E. E. Hatch, L. A. Wise, J. R. Palmer, Marianne Hyer, et al. 2006. Menstrual and reproductive characteristics of women whose mothers were exposed in utero to diethylstilbestrol (DES). International Journal of Epidemiology 35 (4): 862–868. Todd, Alexandra Dundas. 1994. Double vision: An east-west collaboration for coping with cancer. Hanover, N.H.: Wesleyan University Press. Turiel, Judith S. 1985. Statement to the DES Task Force. DES Action Voice (24): 4, 5. ———. 1987. Medical reports on fertility. DES Action Voice (34): 1, 8. Ulfelder, Howard. 1980. The stilbestrol disorders in historical perspective. Cancer 45:3008– 3011. ———. 1981. Introduction to DES: The complete story, by Cynthia Laitman Orenberg, xi– xii. New York: St. Martin’s. U.S. Bureau of the Census. 1990. Statistical abstract of the United States: 1990. 110th ed. Washington, D.C. ———. 2001. Statistical abstract of the United States: 2001. 121st ed. Washington, D.C. U.S. Department of Health and Human Services (U.S. DHHS), Public Health Service, National Institutes of Health. 1985. Report of the 1985 DES task force. Typescript. U.S. Department of Health and Human Services (U.S. DHHS), National Institutes of Health (NIH). 1999. DES research update 1999: Current knowledge, future directions. NIH Publication No. 00–4722. Washington, D.C.: U.S. Government Printing Office. U.S. Department of Health, Education, and Welfare (U.S. DHEW). 1971. Drug bulletin: Diethylstilbestrol contraindicated in pregnancy. Washington, D.C.: U.S. Department of Health, Education, and Welfare. ———. 1978. DES task force summary report. DHEW Publication No. (NIH) 79–1688. Washington, D.C.: U.S. Government Printing Office. Ventura, Stephanie J., Joyce C. Amba, William D. Mosher, and Stanley Henshaw. 2003. Revised pregnancy rates, 1990–97, and new rates for 1998–99: United States. National Vital Statistics Reports 52 (7): 1–14. Wheeless, C. R., Jr. 1992. Vulvar-vaginal reconstruction. In Gynecologic oncology: Fundamental principles and clinical practice, 2nd ed., vol. 2, ed. Malcolm Coppleson, John M. Monaghan, C. Paul Morrow, and Martin H. N. Tattersall, 1411–1423. New York: Churchill Livingstone. Williams, Gareth. 2000. Knowledgeable narratives. Anthropology and Medicine 7 (1): 135– 140. Wingard, Deborah L., and Judith Turiel. 1988. Long-term effects of exposure to DES. Western Journal of Medicine 149:551–554. Zimmerman, M. K. 1987. The women’s health movement: A critique of medical enterprise and the position of women. In Analyzing gender: A handbook of social science research, ed. B. B. Hess and M. M. Ferree, 442–472. Newbury Park, Calif.: Sage.

Index

1992 DES Workshop, 7, 11, 25; alliances at, 122, 126–127; attendees of, 121, 123, 128; counterdiscourses produced at, 120, 121– 122, 193–194n1; DES activists’ participation in, 23, 26, 125–126, 127, 129–130, 145; DES daughters at, 125–126, 127, 128–129, 130–131, 135–136; discourse of gynecologic oncology at, 36, 186n11; disruptions off the floor during, 138–144; disruptions on the workshop floor during, 128–138, 194n17; eruption of subjugated knowledges in, 120, 121, 125–126, 144, 193–194n1; format of, 123, 124, 126, 127–128, 194n6; and funding for DES research, 24, 26, 123–124; goals of, 19, 123, 128; Helfand filming at, 125, 142–144, 165; impact of, 10, 24, 27, 120, 121, 122, 145; narrative analysis of, 121–122, 146, 193–194n1; narratives at, 7, 10, 127, 131, 133–134; organizing group for, 123; planning of, 24; presentation of research projects at, 184n43; recommendations made at, 24, 123–124, 130–131, 132–134, 135, 138, 144–145, 184n42; science as usual at, 124–125, 129, 134; scientists at, 129, 134, 160, 197n20; sponsors of, 121; subjugated knowledges in, 121–122, 123–144, 172,

193–194n1, 194n17; symbolism of starting date of, 123; and transformed relations of power, 13, 19–20 1999 DES Workshop, 26–27, 28, 184nn42– 43, 184n48 Acne, 16, 180n3 Adenosis, 46, 48, 97, 98, 187n18 Adess, Nancy, 197–198n6 Adoption, 73, 76, 80, 81, 94, 140, 191n26 Agriculture, 87, 180n3, 191n23 American Cancer Society, 18, 46 American Journal of Obstetrics and Gynecology, 17, 191n18 Animal studies, 16, 24, 159, 180n3, 188n1 Apfel, Roberta, 182n22; collaboration of, with author, 36, 186nn11–12; DES daughters and activists legitimated by, 136, 138, 139, 144; and the emotional risks of DES exposure, 136, 194–195n26; on infertility and DES exposure, 72; and My Virginia, 139, 141, 142; use of slides resisted by, 139–140 Attorneys, 168, 170, 185n6, 197–198n6, 198n7 Becker, Gay, 78, 81 Becker, Howard, 179n14

212â•…Index “Becoming a Political Woman” (Bell), 55–56 Bern, Howard A., 123, 182n21, 197n20, 197–198n6 Bichler, Joyce, 170, 197–198n6 Birth. See Childbirth Birth control, 16, 47, 48, 49, 54, 55, 102, 128, 180n3 Blair, Phyllis, 129, 182n21, 197n20 Blue Vinyl (Helfand), 125, 196n13 Bodies: DES daughters’, 99, 119, 12–13; hormonally constructed concepts of, 15, 180n2; as hybrids, 98; postmodern feminist theories of, 180n1 Boston Women’s Health Book Collective, 80, 179n12 Boylan, Jenny, 119 Brain Brew Entertainment, 169–170 Braun, Margaret Lee: and DES research, 21, 23–24, 25, 26; DES Stories edited by, 160; keynote address at 1992 DES Workshop given by, 123, 126–127 Broder, Samuel, 24 Brown, Elsa Barclay, 187n19 Bush, George H. W., 14, 163, 183n30 Cancer: 1971 study, 1; breast, 4, 20, 127, 184n39, 185n5; cervical, 31, 78–79, 190n12, 190n15; conflicting knowledges of, 30; and DES, 1, 7, 11, 12, 18, 23, 105, 177n1, 181–182n12, 183n25; incidence of, 177n1, 185n5; missing from discourse at thirtieth anniversary of DES Action, 169; prostate, 180n3; strategy of not revealing diagnosis of, 40, 186n13; treatments for, 32, 185n3; vaginal (see Clear cell adenocarcinoma); in women in the 1980s, 12. See also Clear cell adenocarcinoma Canon Law, 102–103, 192n7, 192n9 Cassie: border metaphor used by, 99, 100, 101–102, 103, 104, 118, 192n9; and Catholicism, 100–104, 192nn9–10; and medical heroism, 13; narratives of, 99–104; and old regimes of DES practice, 118 Catholicism, 100–103, 104, 118 CBS Evening News with Dan Rather, 125, 143 “Celebrating 30 Years of Action,” 167–171, 174, 197n3 Centers for Disease Control (CDC), 26, 71, 97, 184n42, 187n18, 188n1 Cerclage, 79, 135, 137, 138, 189n8 Cervical cockscomb, 58, 97, 187n21

Cervical incompetence, 79, 83, 98, 190nn12– 15, 190–191n17, 191n18 Cervical stenosis, 98, 111, 190n15 Childbirth: Cesarean section, 79, 190n16; and DES, 16, 72; dominant cultural narrative of, 72; medicalization of, 190n16; premature, 74, 75, 76 “Children of DES, The,” 195n35 Christianson, Kari, 76, 94–95, 197n3, 197–198n6 Clear cell adenocarcinoma, 1, 29, 46; and adenosis, 48, 50, 98; and DES exposure, 1, 18, 31, 49, 79, 97, 185n2; incidence of, 32, 59, 177n1, 188n27; rarity of, prior to DES, 12, 31, 34; research on, 25, 26; treatments for, 32, 185n4 Clinton, Bill, 26 Cody, Nora, 24, 123, 126–127, 197–198n6 Cody, Pat, 168, 197n3, 197–198n6; and DES research, 26, 27, 184n35 Cohen, Fay, 197n3 Cohorts, 181n10, 183n34 Colborn, Theo, 160, 196–197n17, 197n20 Colposcope, 113, 114, 192–193n14 Colton, Theodore, 127 Cone biopsy, 77, 78–79, 188n24, 190n15 Conization, 77, 78–79, 188n24, 190n15 “Continuation of Follow-up of DES-Exposed Cohorts,” 24–25, 145, 183n32 Cooper, Adrienne, 196n8 Cryosurgery, 98, 111, 192n6 “Cyborg Manifesto, A” (Haraway), 178n7 Cyborgs, 98, 109, 178n7 Davis, Kathy, 177–178n6, 180n1 DCN. See DES Cancer Network DCN Newsletter, 23, 121 Deborah, 172; and feminism, 60, 68–69; and knowledge, 55, 58–59, 60, 67; narrative devices used by, 63, 64, 68, 188n26; narratives of, 55–69; and new regimes of DES practice, 34, 58, 68, 70; and power, 55, 60; relationship of, with author, 34, 35, 55–56 Delalutin, 77, 79, 190n14 Department of Health, Education, and Welfare (DHEW), 20, 22, 182n15 DES: and anecdotal evidence, 23, 137–138; covert use of, in agriculture, 87; cultural assumptions about, 18; daughters of (see DES daughters); effects of, 1, 24–25, 26, 27, 31, 97, 99, 182n23, 184n44, 187n21,

Indexâ•… 213 188n1 (see also Cancer; Clear cell adenocarcinoma); emotional risks of exposure to, 25, 136, 194–195n26; history of, 11, 15–18; hybridity of, 29; incidence of exposure to, 17, 154, 186n9; and knowledge, 11, 30, 47, 70, 145–146, 188n28; legislation and funding for education, research, and outreach, 23–27, 145, 163, 183n30; personal narrative and emotional expression about, 136; production of, ceased, 180n3; promotion of, 1, 151; and regimes of practice, 7, 18–19, 43, 46, 96, 98; safety reviews of, 16–17; use of, banned by the FDA, 87, 152; uses, 15–16, 17, 180n3; women who took, 1, 2, 127, 198n7; as wonder drug, 1, 109, 142, 151, 170 DES Action: and the 1992 DES Workshop, 24, 123, 125, 126, 132, 144, 145; alliances formed by, 20, 22, 27, 29, 58, 126–127, 182nn20–22; and DES research, 21, 23, 25, 26, 132, 184n35; and the DES Task Force, 21; discourses of, 58, 60, 70, 169; letter-writing campaign orchestrated by, 163, 197n24; McLachlan honored by, 184n48, 197–198n6; mentioned, 2, 30, 33, 34, 66, 77, 78, 123, 169; and networks of power and knowledge, 68, 71; newsletter of (see DES Action Voice); and the term “wonder drug” for DES, 109; thirtieth anniversary of, 14, 167–171, 174, 197n3. See also DES activists and activism DES Action Third Generation Network, 29 DES Action Voice: adenosis as defined in, 187n18; on “cervical incompetence,” 191n18; counterdiscourses in, 75–76, 93, 94–96, 165–166, 191n26; dominant cultural narrative of, 74, 77, 93–94; and health feminism, 80; intensive mothering discussed in, 72, 75–76, 93, 94–96, 191n26; letters to editor in, 9, 76–81, 93, 95–96, 156, 163, 164, 172, 189n10; mentioned, 7, 12, 21, 121, 189n6; mission of, 76; pregnancy as discussed in, 76, 189n7, 189n9; profiles of activists, attorneys, physicians, and scientists in, 168, 197– 198n6; questionnaire in, 23, 130, 182n23, 182–183n24; and the thirtieth anniversary of DES Action, 167; topics in, 93–94 DES activists and activism: alliances formed by, 2, 20–22, 23, 26, 122–123, 132, 146; DES Cancer Network, DES daughters, and

the 1992 DES Workshop, 23, 24, 26, 125– 126, 127, 145; and DES research funding, 23, 132; as embodied health movement, 19, 120, 122–123, 146; letter-writing campaign orchestrated by, 163; and personal narrative, 164; and power and knowledge in DES science, 23, 120, 122–123, 131, 146; and research on women’s health, 24, 183n29; turning point of, 120; at Wingspread, 160. See also DES Action DESAD. See National Cooperative Diethylstilbestrol Adenosis Project DES Cancer Network (DCN): DES activists and activism and the 1992 DES Workshop, 24, 123, 125, 145; alliances formed by, 22, 126–127; and Deborah, 34, 66, 68; DES daughters recruited from, 36; and DES research, 23–24, 25, 26; mentioned, 2, 21, 26, 30, 34, 186n12; missing from discourse at thirtieth anniversary of DES Action, 169; and networks of power and knowledge, 29, 68, 71; newsletter of, 23, 121, 183n25 DES daughters: at the 1992 DES Workshop, 125–126, 127, 128–129, 130–131, 135–136; daughters of, and DES, 188n1; DES as additional, pharmaceutical parent to, 98; dominant discourses in, 171, 173– 174 (see also Narratives, DES daughters); and eating disorders, 186n15; embodied knowledge of, 172–173; false reassurances received by, 59, 187–188n22; finding, 185nn6–7, 185–186n8, 186n10; as hybrids, 98, 172; identity of, 11–12, 30, 31, 109, 178–179n9; impact of, 174; and knowledge about DES, 2, 11–12; letter-writing campaign orchestrated by, 163, 172; narratives of (see Narratives, DES daughters); new reproductive technologies used by, 73, 74, 94; non-normative bodies of, 12–13; and power and knowledge, 11, 13, 30, 47, 70–71, 118; and regimes of DES practice, 2, 7–8, 9, 96, 119, 171; reliance of, on medical scientific expertise, 73–74, 76, 80–81, 98, 99, 146, 170; as a term, 178–179n9 DES Education and Research Amendments, 14, 26, 162, 163, 183n30 DES embodied health movement: convergence in, 172; and embodied knowledges, 172–173; future of, 14; history of, 11, 19–28; narratives of, 10, 174–175; power and resistance in, 172–173

214â•…Index DES Follow-up Study, 24–25, 145, 168, 183n32; and breast cancer, 185n5; and clear cell cancer, 177n1; cohorts in, 183n34; and DES and eating disorders, 186n15; and DES sons, 188n1; and estimates of DES exposure, 186n9; and power in DES regimes of practice, 71 DES mothers, 1, 2, 20, 24, 127, 168, 181n10, 183n34, 184n39, 193–194n1, 198n7 DES Research Update Workshop, 11, 188n1, 190n12 DES sons, 26, 168, 170, 181n10, 184n39, 188n1, 198n7 DES Sons Network, 29, 169 DES Stories (Braun), 160 DES Task Force, 20–21, 182n16 DES Task Force Summary Report, 21 DES Update Campaign, 26, 97, 184n39, 187n18 DES Voices: From Anger to Action (Cody), 168 Developmental Effects of Diethylstilbestrol (DES) in Pregnancy (Herbst and Bern), 123 DHEW, 20, 22, 182n15 Dieckmann, William J., 17, 181n7, 181n10, 183n34 Diethylstilbestrol. See DES Direcks, Anita, 191n26 Doctors: false reassurances given by, 59, 187–188n22; and knowledge and power, 11–12, 13, 20, 87; managing effects of DES exposure, 97–98; as viewed by feminists, 47; as viewed in the late 1960s, 69. See also Medicine Doctor’s Case against the Pill, The (Seaman), 182n15 Dodds, Sir Charles, 198n9 Dodds, Sir Ralph, 198n9 Dumit, Joseph, 70, 188n28 Dutton, Diana, 181n7 Dysplasia, 77, 96; and cone biopsy, 78–79, 188n24; and DES exposure, 78–79, 97, 190n12, 192n5 Eclampsia, 17 Eli Lilly, 140, 169, 180n3, 196n14, 197–198n6 Embodied health movements, 4–7: defined, 4–5, 177–178n6; and DES, 2, 4, 11; dynamics of, 13; and embodied knowledges, 145, 172–173; future of, 14; hybridity of,

5, 6, 126, 178n7; multidimensional approach to, 171, 174; narratives of, 11, 174–175; and regimes of practice, 6, 22–23, 122; and scientific knowledge, 5–6, 22–33, 178nn7–8; subjectivization in, 31. See also DES embodied health movement Endocrine disruptor hypothesis, 14, 184nn46–47; and animal studies, 159; DES as model for, 180n3; DES in formulation of, 14, 27–28, 98; and DES stories, 160–161; in discourse at thirtieth anniversary of DES Action, 169; popular text on, 148; workshops on, 159–160, 196n16 Epstein, Steven, 178n8, 182n13 Erikson, Kai, 63 Esther: age as narrative strategy for, 39, 43, 49, 186n14; body as flexible and fluid in narrative of, 107; and cancer, 12, 64, 68; narratives of, 37–44, 104–110; and new regimes of DES practice, 104–105, 110; and old regimes of DES practice, 12, 34, 42, 43, 49, 69, 107; pelvic exam described by, 104–106, 109, 118, 172; power, knowledge, and desire in narrative of, 39–40, 42–43, 54, 55, 104–105, 107–108, 118–119, 192n11; recruitment of, 34, 35; remapping in narrative of, 106–107; speculum unnamed by, 107, 192n11; symbolic meaning of vagina in narrative of, 107, 108, 109–110 “Estrogens in the Environment,” 27 Estrogen therapy, 15–16, 17 Experience, 177–178n6, 187n19; and postmodern feminism, 180n1 Expertification, 6, 29, 174 FDA (Food and Drug Administration), 16; and DES, 16, 17, 87, 152, 180n3, 181n7; and randomized controlled clinical trials, 17, 180–181n6 Feminism: and the cultural narrative of mothering, 73, 188n2; development of, and letters, 9, 179n12; discourses of, 43, 47, 54; medical profession as viewed by, 47, 52–53, 68, 107; normalizing women’s bodies in, 164; second-wave, 47, 187n19, 188n2; and women in public discourse, 9–10; women’s health activism and counternarratives, 166. See also Feminist scholarship

Indexâ•… 215 Feminist scholarship: and the concept of hybrid, 178n7; experience as a source of knowledge in, 173; and health, 2–4, 15, 180n1; postmodern, 15, 180n1; and power, 2–4, 19; revisionist investigation by, 3–4. See also Feminism Fertility, 59–60, 72, 76, 188n1 Fishbane, Fran, 20, 197–198n6 Fisher, Susan, 72, 182n22, 194–195n26 Food and Drug Administration. See FDA Foucault, Michel, 3–4; on power and knowledge, 107, 118, 171; on subjugated knowledges, 118, 120–121 Freilick, Michael, 169, 197n3, 197–198n6 Friedrich, Su, 196n11 Garro, Linda, 158 Gender, 15, 18, 50, 53, 68–69, 118, 155, 161, 164, 172 Georgakopoulou, Alexandra, 179n11 Giusti, Ruthann, 126, 131, 143; and the 1992 DES Workshop recommendations, 133, 134–135, 145 Goldstein, Andrea, 93, 94, 191n26, 197n3, 197–198n6 Gunnar-Forsberg, John, 132, 133–134, 135 Gynecologists. See Doctors Gynecology, 107, 108. See also Doctors; Medicine Haney, Arthur, 182n22, 197–198n6 Hannah, 75; cervix of, described by gynecologist, 86, 87, 191n23; and intensive mothering, 81, 88, 89–90, 96; medical language used by, 83, 84, 85, 88, 89; narratives of, 81–90; positioned as woman patient, 84–85, 89; and regimes of DES practice, 89 Haraway, Donna, 178n7 Harkin, Tom, 183n30 Hatch, Elizabeth E., 184n43, 186n9, 190n12 Hays, Sharon, 189n3 Healthy Baby Girl, A: and the 1992 DES Workshop, 125, 142–144, 165, 195n32; awards won by, 148; chronological organization of, 148; conventions of autobiographical documentaries in, 10–11, 148–149, 165; “Dear President Bush” narrative in, 14, 161–166, 196n14, 197n22; as domestic ethnography, 153; eggs narrative in, 14, 156–161; family album in, 149,

153, 156, 165, 196n11; first narrative in, 13–14, 149–156, 195n5; Florence Helfand’s appearance in, 197n22; gendered power in, 13, 161, 164–165; Helfand’s surgery in, 148, 149, 150–151, 154, 155, 156, 165; history of DES in, 151, 152, 155; and inadequately tested synthetic chemicals, 156, 196n13; medical scanning images in, 151–153, 196n7; mentioned, 7, 171; music in, 149, 151, 152, 153, 155, 165, 195–196n6, 196n8; the personal as social and political in, 10, 147, 149, 165–166; and Picoult, 142; and power and knowledge in regimes of DES cancer, 149; regimes of practice in, 165; screenings of, 148, 184n43, 195n2; second narrative in, 14, 156–161, 196n14; as subjugated knowledges, 140; transcript of, 195n4; Web site for, 148, 149, 156, 195n2 Height regulation, 16, 180n3 Helfand, Florence, 153–155, 161–163, 164–165 Helfand, Judith: and the 1999 DES Workshop, 184n42; cancer diagnosis of, 147–149, 195n1; on CBS Evening News, 143–144; film by (see Healthy Baby Girl, A); filming by, during the 1992 DES Workshop, 125, 142–144, 165; and “The Children of DES,” 195n35; at the thirtieth anniversary of DES Action, 168, 170; videotape by, shown at the 1992 DES Workshop, 139, 143, 195n35 Helfand, Ted, 153–154, 158, 163 Helmrich, Susan, 21, 23, 25, 145 Herbst, Arthur: at the 1992 DES Workshop, 123, 124; alliance of, with DES activists, 20, 21, 182n22; profiled by DES Action Voice, 197–198n6; Registry established by, 18, 124, 181n9; research on clear cell cancer by, 17–18, 25, 26, 31, 32, 97, 123, 183n25, 185n2 Herbst Registry. See Registry for Research on Hormonal Transplacental Carcinogenesis Hersh, Nancy, 197–198n6 Hoover, Robert, 25, 197–198n6 Hormonalization, 11, 15, 181n11 HR4178, 14, 26, 162, 163, 183n30 Hybridity, 6, 29, 98, 109, 172–173, 178n7, 196n8 Hysterectomy, 31, 32, 42, 64, 103, 154, 163

216â•…Index Hysterogram, 84, 85, 191n22 Hysteroscopy, 84, 85, 191n22 Ibarreta, Dolores, 180n3 Identity, 31, 178n7, 179n11, 187n19 Immune dysfunction, 129, 130 Infertility: causes of, 189n4; and the cultural ideology of the family, 78; and DES daughters, 72, 94; DES prescribed for, 17; and DES sons, 188n1; dominant cultural narrative of, 73–74; incidence of, 74, 189n4; as “all-too-normal” part of reproductive experience, 73 Intensive mothering, 86, 155, 189n3, 191n26; counterdiscourse to, 75–76, 94–96, 191n26; and DES daughters, 74, 75, 76, 81, 96. See also Motherhood Interviews, DES daughters. See Narratives, DES daughters Jellinck, P. Harry, 198n9 Jolly, Margaretta, 93 Jones, Wanda, 28 Journal of the American Medical Association, 40 Kaufman, Raymond, 197–198n6 Kelly, Mary, 196n11 Klawiter, Maren, 177–178n6 Klein, Kim, 94 Klezmatics, 152, 196n8 Knowledge, 11, 13; emanating from local and unstable points, 171–172; embodied, 14, 19, 80, 94, 131, 145, 173–174; and feminist scholarship, 2, 4; subjugated, 120–121, 125 Krakauer, David, 196n8 Labov, William, 8, 9, 195n5 Lactation, 16, 17 Laitman, Cynthia, 197–198n6 Landrigan, Philip J., 196n13 Layne, Linda, 85, 191n21 Letherby, Gayle, 94 Letters: to the editor, 9, 80–81; as social practices, 14, 163, 179n12, 197n24 Levine, Aaron, 168, 170, 197–198n6 “Looking at Bodies: Insights and Inquiries about DES-Related Cancer” (Bell and Apfel), 186n11 Lupton, Deborah, 178n8 Luster, Michael, 129

Mattingly, Cheryl, 158 McCarthy, Caitlin, 170, 179n13, 198n9 McGrory, Mary, 195n36 McLachlan, John, 26–27, 184n48, 197n20, 197–198n6 Medicalization, 15–16, 18, 78, 81, 118, 155, 159, 172, 190n16 Medicine: challenged by DES activists, 2; challenged by women, 52–54; and DES daughters, 4, 7, 9, 11, 12, 13; dominant cultural discourses in, 19, 40, 73–74; feminist views of, 47, 52–53, 68, 87, 107; heroic, 3, 13, 39, 42, 43; and power, 6, 87; regimes of, 2–3, 4, 43; as viewed in the late 1960s, 69. See also Doctors Menopause, 15–16, 17, 18 Michelangelo, 196n7 Miscarriage: and cervical incompetence, 190–191n17; and DES daughters, 74, 75, 76, 83; DES as ineffective in preventing, 17–18, 180–181n6, 181n7, 181n10; DES as prescribed to prevent, 1, 15, 98; general truth about recovering from, 85–86; incidence of, 73, 74, 75. See also Pregnancy loss Molly, 44; age as narrative strategy for, 49–50; feminist identification of, 47–48, 53–54, 68, 69; and knowledge, 48, 52, 54, 55; narratives of, 44–55, 187n17; and new regimes of DES practice, 34, 46–49, 69–70; oppositions in narrative of, 50, 52, 187n19; relationship of, with author, 48; thin appearance of, 44, 186n15; vow of silence of, 44, 187n16 Morgen, Sandra, 187n19 Motherhood: and DES daughters, 72, 73–74, 191n19; dominant cultural narrative of, 12, 13, 72–73, 74, 75, 82, 89–90, 93, 96, 165–166, 189n3 (see also Intensive mothering). See also Pregnancy Ms. Magazine, 80 Mullerian ducts, 188n1 My Virginia (Picoult), 125, 140, 141–142, 171, 195n32 Nader, Ralph, 182n15 Narrative and narrative analysis: and the 1992 DES Workshop, 121–122, 146, 193–194n1; analysis versus inquiry in, 8–9, 179n11; and connection to social structure, 8, 11, 196n10; context of, 9–10; contradictory explanations in, 8, 158;

Indexâ•… 217 defined, 8; and DES stories (see Narratives, DES daughters); and interview accounts, 179n10; and letters, 9; and meaning, 8–9, 179n11; multidimensional approach to, 6–7, 171; multiple, 9; and plot, 8; in the social sciences, 8, 9, 179n10; theory of, 36–37; visual, 10–11, 147, 179nn13–15 Narratives, DES daughters, 7–11; and ages of subjects, 7; and anonymity, 36, 186n10; context of, 9, 10; and dominant discourses, 7–8, 70; finding women for, 33–34, 185nn6–7, 185–186n8, 186n10; interview design, 7, 179n10; multidimensional approach to, 171; and regimes of DES, 7, 9, 11; as socially situated actions, 37; transcription practices for, 36; and turning talk into text, 36–37; visual, 147 (see also Healthy Baby Girl, A) National Cancer Institute (NCI), 71, 123, 168, 183n30, 184n42, 186n9; and the 1992 DES Workshop, 121, 123; DES investigated and treated by, 18, 20, 22, 46; and DES research, 24–26, 124, 183n32, 183n34 National Center for Health Statistics (NCHS), 190n16 National Cooperative Diethylstilbestrol Adenosis Project (DESAD), 97, 126, 181n10, 183n34, 186n9, 190n12; initiation of, 18; and new networks of power and knowledge, 46–47 National Institute of Child Health and Human Development, 121, 123 National Institute of Environmental Health Sciences (NIEHS), 26, 27, 28, 121, 123, 184n42, 184n45 National Institute on Aging, 26 National Institutes of Health (NIH), 19; and the 1992 workshop on DES (see 1992 DES Workshop); and DES research, 21, 124, 133–134, 190n12; Office of Research on Women’s Health, 28, 24, 34, 121, 183n26; and the Registry, 21; Task Force on Opportunities for Research in Women’s Health, 24 NCI. See National Cancer Institute Negri, Patti, 168, 169 Newbold, Retha, 184n43, 184n45, 197–198n6 New England Journal of Medicine, 18, 89, 123 NIEHS, 26, 27, 28, 121, 123, 129, 184n42, 184n45

NIH. See National Institutes of Health Noller, Kenneth L., 129, 182n22, 197–198n6 Office of Research on Women’s Health, 24, 28, 34, 121, 183n26 Oudshoorn, Nelly, 180n2 Our Bodies, Ourselves, 48, 49, 179n12; and feminist health politics, 80, 187n20; impact of, 47, 48; and Molly, 44, 54 Our Stolen Future (Colborn, Dumanoski, and Myers), 148, 196–197n17 Palmer, Julie, 197–198n6 Phillippe, Mark, 131, 136–138, 145, 195n27 Physicians. See Doctors Picoult, Darci, 125, 139, 140, 141–142, 195n32 Pinn, Vivian, 124, 126 Poskanzer, David, 18, 31, 97, 123 Power: and DES daughters, 4, 30–31; exercised from multiple points, 171; and feminist scholarship, 2, 19; hierarchy of, 13; and the hormonalization of women, 18, 181n11; new regimes of, 3; old regimes of, 2–3; transformation of, 11 Pregnancy: and DES daughters, 1, 12, 72, 73–74, 83; DES prescribed during, 17; dominant cultural narrative of, 72; ectopic, 1, 74, 76, 79, 190n13; loss (see Miscarriage; Pregnancy loss); medicalization of, 16, 18, 155; Smiths’ treatment regime for use during, 17, 180n4. See also Motherhood Pregnancy loss, 72, 73, 74, 78, 85, 191n21, 191n24. See also Miscarriage Proceedings, 121, 122, 135, 144, 145, 193–194n1 Public Citizen’s Health Research Group, 20, 182n15 Race, 33, 164, 186n9, 187n19 Rachel, 75, 96; narratives of, 90–93; speech pattern of, 91, 92–93, 191n25 Randomized Controlled Clinical Trial (RCT), 17, 138, 180–181n6, 181n10 Rapp, Rayna, 178n7 Registry for Research on Hormonal Transplacental Carcinogenesis, 18, 71, 124, 181n9; alliance between DES Cancer Network and, 21, 25; and clear cell cancer, 32, 59, 177n1, 188n27

218â•…Index Renov, Michael, 153, 179n15 Robboy, Stan, 79 Rosenberg, Lynn, 127, 128–129, 139, 141, 143 Ruth, 110–111; and motherhood, 116–117, 118, 119, 193n15; narratives of, 110–117; and new regimes of DES practice, 111, 117–118, 193n16; pelvic exam described by, 111–115, 119 Saks, Libby, 197n3, 197–198n6 Sarah, 55–56 Schure, Judith, 76 Schure, Matthew, 76 Science studies, 13, 19, 20–29, 175, 178n7 Scott, Joan, 177–178n6 Seaman, Barbara, 20, 182n15 Sensiper, Sylvia, 70, 188n28 Shainwald, Sybil, 168, 170, 197–198n6 Sherman, Amanda, 76, 94–95 She’s Not There (Boylan), 119 Slaughter, Louise M., 28, 126, 143, 183n30 Smith, George, 17 Smith, Olive Watkins, 17 Snitow, Ann, 188n2 Social science, 8, 9, 10–11, 55–56, 171 Spence, Jo, 196n11 Stacey: heroic narrative of, 75, 77–78; letter sent by, to DES Action Voice, 76–80, 172, 189n10; medical jargon used by, 79; and motherhood, 12, 96; narratives of, 76–81, 189n10; new and risky reproductive technologies used by, 77–78, 79; and new regimes of DES practice, 79–80 Stanford, Patricia Martin, 197–198n6 Stanley, Liz, 93 Subjectification, 31 Swan, Shanna, 122, 131–132, 180n3, 182n21 Tedeschi, Candice, 154, 168, 169–170, 182n22, 197n3, 197–198n6 ‘t Hoen, Ellen, 94 Titus-Ernstoff, Linda, 188n1 To Do No Harm: DES and the Dilemmas of Modern Medicine (Apfel and Fisher), 182n22, 194–195n26 Tung, Kenneth, 139 Turiel, Judith, 21, 130 Ulfelder, Howard: alliances with DES activists

and, 20; DES connected to clear cell cancer by, 18, 31, 97, 123, 181–182n12, 185n3; old regime of practice of, 32 U.S. DHEW, 20, 22, 182n15 Uterus, T-shaped, 84, 91, 92, 93, 97, 98, 187n21 Vagina, 99, 102–103, 107, 119, 172; implants and reconstruction of, 99, 100–103, 104, 107, 109, 119, 141; reconstruction of, 32, 164, 185nn3–4, 192n12 Vagina Monologues, The (Ensler), 119, 172, 193n17 “Viewing Vaginas: Multiple Perspectives on the Aftermath of DES Cancer” (Bell and Apfel), 186n12 Waletzky, Joshua, 8, 9, 195n5 Wallgren, Dolores, 197n3 Williams, Catherine, 94 Williams, Gareth, 196n10 Wingard, Deborah, 23, 129–131, 132, 139 Wingspread conferences, 159–160, 196n16; Precautionary Principle, 160, 197n18 “Wingspread Consensus Statement, The,” 159–160, 197n18, 197n20 Wolfe, Sidney, 20, 21, 182n15, 197–198n6 Women: hormonalization of, 11, 15–18, 180n2, 181n11; and identity, 187n19; and public discourse, 9–10, 161, 164; and response to hormonalization of, 18–19, 181n11 Women and the Crisis in Sex Hormones (Seaman), 182n15 Women’s health activism, 4, 12, 24; counterdiscourses in, 52–53; and DES daughters, 30; discourses of, 54; and fertility, 118; inspired by women’s liberation, 47; and letters, 9, 179n12; medical care challenged by, 43, 49; and new regimes of practice, 43–44; normalizing women’s bodies in, 164; the personal as political asserted in, 164; power and knowledge in, 14, 172; and race, 187n19; second wave of, 47; and support of federal funding, 163; women physicians as viewed in, 50, 187n19 Women’s Health Study, 183n34 Wonder Drug (McCarthy), 170, 179n13, 198n9

Susan E. Bell is the A. Myrick Freeman Professor of Social Sciences at Bowdoin College.