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

Bell, S. DES Daughters: Embodied Knowledge and the Transformation of Women’s Health Politics . Philadelphia : Temple University Press 2009 xi + 218 pp. $US24.95 (pbk ) ISBN 978-1-59213-919-4 When Susan Bell first interviewed DES daughters in 1982, could she possibly have imagined the book she eventually wrote? It is not necessarily a recommendation for a book to be thirty years in the making, but DES Daughters is a remarkably seamless weaving of older and more recent approaches to studying health and illness. Bell’s own background in advocacy certainly contributes to the interpretive richness of DES Daughters; she began her career as one of the authors of a later edition of the feminist classic, Our Bodies, Ourselves. The body is still the foundation of the self, but DES daughters find their bodies connected to multiple sites, interests, and institutional actors. Bell depicts advocacy as a shifting network of alliances, including finding common ground with scientists and clinicians from whom earlier feminists were anxious to dissociate themselves. DES is diethylstilbestrol, first synthesised in 1938 and prescribed to women from 1941 until 1997, although in 1971 the US Food and Drug Administration warned against its prescription to pregnant women, after DES was found to be a transplacental carcinogen. Bell cites studies estimating that “between five and ten million pregnant women and their fetuses were exposed to DES” (p.17). The first animal studies to demonstrate its carcinogenic effects were done in 1939, and further studies in the 1950s questioned its usefulness, but as Bell writes, “physicians at the time disagreed about how to interpret the evidence”. Although today DES is best known for its second-generation effect of causing cancers of the cervix and the vagina in the daughters of women who were prescribed the drug to prevent pregnancy loss, Bell recounts a more complex history of DES use and its effects. The drug was first used not to prevent miscarriage but for the regulation of menopause—DES was the first hormone replacement therapy (p.15, 17). “Not only was DES used widely during menopause and pregnancy,” Bell writes (p.16), “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)”. Nor are the much-publicised vaginal cancers its only consequences. Less than 1% of daughters develop cancer (p.177, n.1), but DES daughters—and sons—suffer from a variety of reproductive health problems. DES can be studied from many perspectives, and Bell is clear that her particular focus is how DES activism reshaped women’s health politics. Her data include a broad range of interview, observational, and archival materials, unified by all being narratives, in a flexible use of that term. Bell’s chapters progress from personal narratives of daughters’ diagnoses, treatment, and experiences of motherhood to collective narratives of activism. While Bell presents daughters as specific individuals, interviewed in particular settings with distinctive smells and contingent interruptions, her interest is “exploring how cultural discourses shaped [daughters’] responses and how collectively their individual responses created new pathways, transformed relations of power and knowledge, and contributed to making new spaces and conversations” (p.120). More specifically, Bell shows how DES daughters participated in medical meetings and “brought subjugated knowledges into techno-science talk” (p.121). The seminal event analysed in detail is a 1992 DES Workshop sponsored by the US National Institutes of Health. Activists were acknowledged from the podium and contributed throughout the meeting, yet Bell points out that the official Proceedings of the workshop rendered their contributions—or “interruptions”—largely invisible. “Importantly,” Bell writes, “subjugated knowledges did not replace medical discourse but instead displaced or decentered it and made space for doing work differently” (p.145). At the workshop, “several narratives” worked in overlapping ways: “a scientific workshop building power and knowledge for future research and care, techno-scientists building careers, and funding agencies dispersing research funds” (p.146). In addition, there were after-sessions performances and screenings, lending an arts dimension to the meeting. The story of this workshop encapsulates the transition of the women’s health movement from confrontation to alliance building (p.22), and reciprocally—though less Bell’s emphasis—how medical science became increasingly open to learning from lay experience (p.131). Narratives, for Bell, are circulating (p.147), connecting multiple sites, sometimes creating durable alliances. Bell’s analysis has many sources—Michel Foucault’s ideas about power are prominent—but especially important are Steven Epstein’s (1996) research on how Gay males claimed a voice in medical decision-making about HIV/AIDS research and treatment, and Maren Klawiter’s (2008) study of breast-cancer activism in the Bay Area and the different “regimes” of medical power experienced by women treated in different decades. Like Epstein and Klawiter, Bell is concerned to neither underestimate nor overestimate the effect of lay activism on institutional medicine. Like them, she understands relations of health and illness as circulating between individual subjectivities, social movements, and institutional structures, including not only medicine but also law. DES Daughters is about terrible things happening to well-intentioned people, and it is about victims becoming empowered to make changes in the techno-science that, with supreme irony, created a new intensity of the same suffering that it set out to remedy. The book deserves a place among those that are reshaping how sociology of health and illness is imagined. It will definitely be assigned reading in my future courses, both undergraduate and graduate.

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