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DES Daughters, Embodied Knowledge, and the Transformation of Women's Health Politics in the Late Twentieth Century

DES Daughters, Embodied Knowledge, and the Transformation of Women's Health Politics in the Late Twentieth Century

Susan E. Bell
Copyright Date: 2009
Published by: Temple University Press
Pages: 232
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  • Book Info
    DES Daughters, Embodied Knowledge, and the Transformation of Women's Health Politics in the Late Twentieth Century
    Book Description:

    From the 1940s to the 1970s, millions of women were exposed prenatally to the synthetic estrogen DES, a "wonder drug" intended to prevent miscarriages. However, DES actually had damaging consequences for the women born from DES mothers. The "DES daughters" as they are known, were found to have a rare form of vaginal cancer or were infertile. They were also at risk for miscarriages, stillbirths, and ectopic pregnancies.In DES Daughters, Susan Bell recounts the experiences of this generation of "victims." In moving, heartfelt narratives, she presents the voices of those women who developed cancer, those who were cancer-free but have concerns about becoming pregnant, and those who suffered other medical and/or reproductive difficulties.Bell examines the hierarchy of knowledge and power of scientists, doctors, and daughters, tracing the emergence of a feminist health movement. The "embodied knowledge" of these DES daughters prompted them to become advocates and form a social movement that challenged reproductive medical knowledge specifically, but also the politics of women's health in general. Bell's important book chronicles the history and future of these grassroots activists born out of illness, suffering, and uncertainty.

    eISBN: 978-1-59213-920-0
    Subjects: Sociology, Public Health

Table of Contents

  1. Front Matter
    (pp. i-vi)
  2. Table of Contents
    (pp. vii-viii)
  3. Acknowledgments
    (pp. ix-xii)
  4. Introduction: Connecting Lives, Texts, and Social Change
    (pp. 1-14)

    This 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...

  5. 1 A History of DES
    (pp. 15-29)

    DES (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...

  6. 2 Narratives and Lives: The Politics of Knowing for DES Daughters
    (pp. 30-71)

    This 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...

  7. 3 Becoming a Mother after DES
    (pp. 72-96)

    DES 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 ofDES Action Voicepointed out this same “special irony”—that DES daughters are “having to make difficult decisions about the risks and benefits...

  8. 4 Remapping DES Bodies
    (pp. 97-119)

    Soon 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...

  9. 5 Power, Knowledge, and DES
    (pp. 120-146)

    The 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...

  10. 6 Healthy Baby Girls
    (pp. 147-166)

    This 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 inA 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...

  11. Conclusion: Performing DES, Embodying a Health Movement
    (pp. 167-176)

    This 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 theDES Action Voice, on the DES Action Web site, and in invitations sent through the mail.¹ Sponsored...

  12. Notes
    (pp. 177-198)
  13. References
    (pp. 199-210)
  14. Index
    (pp. 211-218)
  15. Back Matter
    (pp. 219-219)