DES Daughters


"Susan E. Bell's history of the feminist DES movement—with its confrontations to seek voice; status in medical dialogues; and, whenever possible, answers—is informative, compelling, and important. It begins with the discovery in 1971 that diethylstilbestrol, a standard medication that was thought to prevent miscarriages, had become—for the daughters of those who took it—associated with a rare type of vaginal cancer and myriad reproductive complications (ectopic pregnancy; premature birth; stillbirth; and, ironically, miscarriage). The author describes the establishment of grassroots organizations (DES Action in 1975 and DES Cancer Network in 1982) that challenged contemporary knowledge; many personal stories; up to a 1992 DES Workshop that became a turning point for the relationships that Bell describes among science; medicine; and the women, their families, and friends who have lived with the physical and emotional results of DES.
  Bell achieves three relevant frameworks in her study. First, she reports on feminist health scholarship that confronted old patterns of male physicians' centralized power over female patients, promoting new models and knowledges from multiple locations. Second, she describes how the DES embodied health movement challenged science that was based on personal experiences and built alliances (including fund raising) with researchers to improve the medical treatments on which the DES daughters' lives depend. Finally, she presents narrative analyses as central through a series of profound conversations with DES daughters: in interviews with her, as letters to DES publications, in public discourses, and through visual narratives. The two chapters from Bell's own interviews meticulously demonstrate the strengths of this type of analysis.
  Bell makes a logical decision to focus on the DES daughters while dutifully mentioning the sons and mothers as part of this complex history. In the conclusion, describing a celebration of DES Action in 2008, she hints at her discomfort that men (via tributes to DES sons and male lawyers who had represented DES daughters) seemed to be playing a more dominant part than she had expected. These sentiments are understandable, but less so are Bell's seeming avoidance throughout the book of giving voice to DES mothers—sometimes feminist women—who have also painfully lived through every nuance of this most difficult situation. The one exception to the seeming minimization of the mothers comes in the final chapter when she describes a film that centered the filmmaker's mother in the narrative.
  From an artistic point of view (an interest of Bell's), the description of Judith Helfand's autobiographical documentary film (Healthy Baby Girls, 1996) intrigues the reader. The film has multiple dimensions in terms of sound, story level (everyday family events to political outrage), movements in time, symbolism, and medical events with their various interpretations (the removal of Helfand's uterus and the top third of her vagina at age 25 being central). Altogether, Bell successfully recounts events that are often tragic and grim—their details not well enough known—and presents a feminist story that soars at times to heights of connection, creativity, and inspiration."
— Reviewed by Fiona M. Patterson, Department of Social Work, University of Vermont, Burlington, VT.
Affilia: Journal of Women and Social Work 

  "Susan Bell, a professor of social sciences at Bowdoin College, brings a feminist scholar's sensibility to the stories of 20 women whose lives were disrupted by cancer, miscarriage, and infertility due to their exposure to DES. In her book, DES Daughters: Embodied Knowledge and the Transformation of Women's Health Politics (Temple University Press, 2009), Bell argues that feminism, the fledgling women's health movement, and the discovery that DES caused cancer and reproductive abnormalities in children of women prescribed it during pregnancy combined to produce what social scientists call an "embodied health movement."
   These movements arise from an illness or medical condition, such as AIDS or breast cancer, and typically challenge existing medical/scientific knowledge and practice. They are also characterized by the involvement of activists and the formation of organizations, such as DES Action and DES Cancer Network, which eventually lead to collaboration with scientists and health professionals in pursuing treatment and expanding research funding.
   Bell suggests that in the years since the connection between DES exposure and clear cell cancer was discovered in 1971, the DES experience evolved into an embodied health movement.
   Her evidence is based on the personal stories of DES Daughters she interviewed. The recorded interviews were transcribed verbatim. Bell parses each woman's sentences, looking for clues to how each feels about her DES exposure, the information she received from her doctor, the way she received that information, and her reactions to it.
   Bell describes how these women react differently as knowledge and attitudes about health and the roles of doctors and patients gradually changed.
   Esther, for example, was 22 when diagnosed with vaginal cancer several years before the DES link to cancer was made. Her surgeon told her she needed a hysterectomy and he might have "to take more things out."
   Bell suggests that Esther was left in the dark about what was happening to her body. Her surgeon operated, removing her vagina, bladder, urethra, uterus, right ovary and fallopian tube in a "heroic" attempt to save her life. Heroism in medicine was what was expected back then.
   Fast forward to 1981 when Molly finds a lump while inserting her diaphragm. At almost 26, she had earlier read Our Bodies, Ourselves and later, after learning she might be a DES Daughter she located a clinic with DES-experienced physicians. Although told she was past the age of clear cell cancer, she knew enough to be suspicious when she felt the lump.
   When Molly disagreed with the proposed course of treatment she was self- confidant enough in her own knowledge of her body and DES to seek out another doctor.
   The stories these two women tell, and those of the others in the book, show how much has changed in a relatively short time.
   For the casual reader, some of the scholarly terminology can be daunting. (If you're not up on Foucault and his theories, a quick check on Wikipedia can help.) But there is plenty in this book for non-academics. The narratives are moving, and Bell's view of how individually and collectively DES Daughters created an embodied health movement is intriguing. Temple University Press has generously offered DES Action USA members a 20% discount when they purchase this book. Use promo code TDESA09 at or by calling 1-800-621-2736. The discount is good through the end of December."
—Reviewed by Christine Cosgrove DES Action USA member and co-author of Normal at any Cost: Tall Girls, Short Boys, and the Medical Industry's Quest to Manipulate Height.

"In this wise and well-researched book, Susan Bell uses a narrative analytic strategy to both present and make sense of the ‘embodied social movement’ that arose among ‘DES Daughters’—women (and later some men) whose mothers had been given a ‘wonder drug’ to prevent miscarriage in the 1940s, 1950, and 1960s that only from the 1970s forward was understood to produce devastating reproductive-tract results. Bell shows us how their experiences changed, as did the women’s movement, health care activism, and scientific and biomedical practices. The result enables us to understand not only what women have to say about taking action to preserve and protect their own lives and the lives of others but also how both U.S. health movements and those who want to understand them evolve over time"
—Rayna Rapp, Professor of Anthropology, New York University, and author of Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America

"DES Daughters is a pleasure to read. In addition to Bell’s sensitivity and intelligence, she brings the reader close to the people she writes about—we get to know the women in the book and their stories come across very lively and sympathetically."
—Phil Brown, Professor of Sociology and Environmental Studies, Brown University

paper EAN: 978-1-59213-919-4 (ISBN: 1-59213-919-1) $24.95
cloth EAN: 978-1-59213-918-7 (ISBN: 1-59213-918-3) $74.50
232 pp 6x9 4 halftones