The resources that follow are those that I have found helpful in writing my book, and that readers of DES Daughters can consult with to learn more about the different topics addressed in it. The resources expand upon the story I construct in DES Daughters about the history of DES, the embodied knowledges of DES daughters, and the transformation in women’s health politics over the past 40 years.
DES activists have gained a place at the scientific table by forming citizen and scientist alliances in the pursuit of research, treatment, prevention, and expanded funding for the support of DES mothers, daughters, and sons. Two grassroots organizations have been key to their success, DES Action and the DES Cancer Network.
DES Action is a grassroots organization that was founded in the 1970s by women exposed to DES in pregnancy – DES mothers who took it to prevent miscarriage and DES daughters who were exposed to it prenatally. DES Action has a newsletter, a webpage and on-line support network. It also supports legislation and policy favorable to DES-exposed people and their families. According to its website, today there are 5 affiliates of DES Action in the US (including a DES Sons Action Network) and DES Action-related organizations in France, England, Australia, Ireland, and the Netherlands.
DES Cancer Network
The DES Cancer Network (DCN) was founded in 1982 by DES daughters who developed reproductive tract cancer (vaginal and cervical cancer). DCN has bridged the gap between the scientific community and those exposed to DES, worked to change the science of DES. DCN no longer publishes a newsletter, but it continues to be a key resource for those who develop DES-related cancer.
DES Follow-up Study: Scientific researchers, center coordinators, and DES advocates
Credit: DES Follow-Up Website
In 1971, Arthur Herbst, David Poskanzer, and Howard Ulfelder published an article in the New England Journal of Medicine demonstrating a link between prenatal exposure to DES and a rare form of vaginal cancer in DES daughters. After publication of these findings, Cancer Registry was founded at Massachusetts General Hospital to track women developing DES-related cancer. When Herbst moved to the University of Chicago, he moved the Registry with him. http://obgyn.bsd.uchicago.edu/registry.html
DES Follow-Up Study
The DES Follow-Up Study began in 1992, after passage of national legislation – the DES Research and Education Bill funded by the federal government. The legislation required collaboration between scientists and DES exposed people. The collaboration is represented visually by this photograph. The group photo includes – among others – Dr. Arthur Herbst, who is the lead author of the ground breaking study published in the New England Journal of Medicine (1971), Professor John McLachlan, who has for years connected the science of DES with the science of endocrine disruptors through his studies of the effects of these substances on mice, Margaret Lee Braun and Susan Helmrich, co-founders of the DES Cancer Network, epidemiologists Julie Palmer and Lauren Wise from the School of Public Health at Boston University, and DES Daughter Kari Christianson, Program Director of DES Action.
DES Update is a national health program funded by the U.S. Congress and developed by the National Cancer Institute in conjunction with other organizations to provide the most current and accurate information about DES. The website is sponsored by the CDC (Center for Disease Control) and provides information for consumers and health care providers in general and for “DES Update Partners” in particular.
A Healthy Baby Girl, is an autobiographical documentary film by DES daughter Judith Helfand (1996).Judith Helfand was diagnosed with DES-related cancer in 1990. 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. Like many autobiographical documentaries, A Healthy Baby Girl is organized chronologically. The first scene 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).
One of the chapters in my book focuses on A Healthy Baby Girl to show how DES daughters’ stories circulate among and are connected with those in women’s health activism, endocrine disruptors, and embodied health movements.
Helfand made a second film, Blue Vinyl (2002), that also makes a private issue public. Blue Vinyl begins with Judith’s parents’ decision to replace the rotting wood siding on their house on Long Island with blue vinyl siding. Judith uses this as an opportunity to explore the effects of plastic (vinyl) on the environment.
Over the years, many books about DES have been published. I describe some of them below.
DES Stories: Faces and Voices of People Exposed to Diethylstilbestrol (Visual Studies Workshop Press, 2001) is a collection of photographs of DES daughters, mothers, sons, fathers, and grandchildren who chose to show their faces and tell their stories. The author, Margaret Lee Braun, is a DES cancer daughter who co-founded the DES Cancer Network. She began the project because she wanted to have a better understanding of what had happened to her. Lee Braun interviewed 60 people, asking each of them "What has happened to you because of DES?" and "What does being DES-exposed mean to you?" The stories people told her are placed alongside 40 beautiful black and white portraits by photographer Nancy Stuart. The book honors the particulars of each individual’s life experience and the need for caution and thoughtful testing before releasing chemicals into human and animal use.
DES Daughter: The Joyce Bichler Story (Avon, 1981) is a gripping memoir by a DES cancer daughter that interweaves her experiences of having treatment for vaginal cancer with the experiences of suing a drug company for exposing her to DES. Joyce Bichler was the first DES daughter to sue and the first to win her law suit. She tells of her testimony, of the court case and of the jury’s verdict.
To Do No Harm: DES and the Dilemmas of Modern Medicine (Yale, 1984) considers the psychological and emotional effects of DES-exposure. The authors, psychiatrists and psychoanalysts Roberta J. Apfel and Susan M. Fisher draw from their clinical experience as well as the scientific and historical record to explore the moral and practical lessons taught by DES. These include the value of prudence in medical research and ongoing public involvement in medical technology development.
I read Ruth Ozeki’s novel, My Year of Meats (1998) while traveling in the UK, where it was published before its release in the US. I couldn’t put it down. DES is incorporated into the plot, but appears more centrally at the novel’s end than at its beginning. My Year of Meats follows a bi-racial filmmaker named Jane as she makes a series of episodes for Japanese television about how American women prepare beef – Jane’s work is paid for and sponsored by BEEF-EX, a US-based meat lobby seeking to expand its market in Japan. Jane films a series of US families, each of them making a beef-based dinner. Along the way, Jane – who is a DES daughter – investigates the beef industry in the US, the use of DES in cattle feed, and the effects of DES on people exposed to DES in the food industry and agribusiness as well as in medicine.
what i thought i knew (2009), by Alice Eve Cohen, is a memoir about Cohen’s experiences of becoming a mother after DES. Although Cohen decenters DES, DES is everywhere in this book. For my review of it, see my August 2009 blog posting to North Philly Notes at the Temple University Website: What Susan Bell thinks of ‘what i thought i knew’