For my project, I hope to present a creative work--poem, performance, action documents, lyrical essay--considering the physical, political, environmental, and cultural effects of the drug DES (Diethylstilbesterol) within the framework of Butler's ideas about norms, normativity, aspiration, bodies, precariousness, the human/non-human, failure, and a more generalized focus on the importance of sustained mourning. DES is a synthetic estrogen that was prescribed to pregnant women through the mid-1970s primarily to prevent miscarriage. Although early studies on animals and pregnant women, even as early as 1941, set off alarms about the dangers of this drug, it was swept up into the market and prescribed liberally, sometimes even as a hidden additive to prenatal vitamins, and also used as a "morning after" pill, to stunt the growth of "too-tall" girls, to treat breast and prostate cancers, to treat menopausal symptoms and certain STDs, and as a growth hormone in the beef and poultry industry. In 1971, a study published by the New England Journal of Medicine showed a link between rare forms of vaginal clear cell carcinoma in girls and young women who had been exposed to DES in utero. This made DES the first transplacental carcinogen known in humans; that is, it not only crossed over the placenta, but its toxic effects manifested sometimes decades after initial exposure. (Some older DES Daughters--as these exposed female offspring came to be known--are now faced with increased risk of breast and uterine cancer as well as auto-immune disease into their 60s.) Nevertheless, it was not until 1975 that the FDA finally banned the use of DES during pregnancy (although many doctors continued to prescribe it until as late as 1980.) The women, most in their late teens and early twenties, diagnosed with these clear cell carcinomas underwent extensive surgeries that included vaginectomy, or actual removal (castration?) of the vagina.
In time, more anomalies were linked to in utero DES exposure, including increased risk for cervical and other reproductive tract cancers, infertility, higher rates of miscarriage, and a variety of reproductive tract deformities including uteri that are t-shaped, stenosed, mottled, and variously misshapen, vaginal and cervical adenosis, cervical hoods and other cervical anomalies, menstrual disorders, and other physical defects as well as higher occurrence of mental health issues such as depression and anxiety. In addition to being carcinogenic, DES is also a known teratogen (meaning it causes physical birth defects; teratogen is from Latin meaning "monster-making.") The typical dosage of 125 mg/day for a pregnant woman is the equivalent of 700 birth control pills (a day!). DES, like bisphenol-A, DDT, and others, is an "endocrine disruptor," synthetic hormones loosed into the environment that greatly impact the expression and function of bodies (not only human bodies.)
I am a DES Daughter, and while I have thus far dodged cancer, I do house various teratogenic effects of DES and consider the drug in many ways to be a kind of "pharmaceutical parent" or ground zero of identity. In her book DES Daughters: Embodied Knowledge and the Transformation of Women's Health Politics, Susan Bell (Professor of Social Sciences at Bowdoin University), who has interviewed many DES Daughters, talks about their experience of feeling like "cyborg babies" and "cyborg women"--"Their bodies are hybrides, mixtures of machines--that is a pharmaceutical--and organisms."
I (many doctors/nurses have claimed "miraculously") managed to carry a baby almost to term (she was 4 weeks early) 20 years ago, but have had 5 known miscarriages, one an early stillbirth, and essential infertility since my early 20s. Additionally, I have a deformed uterus and cervix, severe endometriosis, have had countless cervical and endometrial biopsies and, due to scar tissue from those, episodes of cervical stenosis, irregular and abnormal menstrual cycle since menarche, and the constant anxiety of future cancers and other potential problems. Additionally, studies are now being done on DES Granddaughters who may also (though it's not proven at this point) have higher risks of infertility etc.
Much of Butler's ideas about normativity and gender, if not embodiment, bring to mind for me the situation of DES. Unlike Sanaura Taylor, my and other DES Daughter's "disabilities" are invisible, the non-normative physical manifestations and precariousness of gender are embodied but not readily expressed. Nevertheless, I know I'm not alone in having assumed throughout my life an identity of being "not normal," "not pure," "not feminine," indeed of somehow being hybrid or contaminated, which has had enormous impact on my experience of identifying as a "woman." DES Daughters (and sons, who also were affected) were bathed almost from conception in synthetic hormones and so were never "all human" in a sense. This ties into notions of ethics and gender for me on many levels, notably the unquestioned ethics of the medical community, largely a patriarchal structure, whose assumed control over the bodies and health of women--especially pregnant and birthing women--has evolved uncensored for centuries and has in many ways come to define the terms of physical femininity and feminine "disease." My work as a doula (birth assistant) has been illuminating in terms of birth politics and the pervasive fear-mongering imposed upon vulnerable pregnant women by the market and the medical patriarchy.
Is the DES-damaged body a queer body? Has that body been queered by synthetic estrogen (deemed, by Charles Dodds who is the discoverer of "Stilbestrol," "The Mother Substance"), the very hormone that is primary to female sexual expression and function, and further queered by corporate (e.g. pharmaceutical) pressures on ethical boundaries? Does this project seem too off-the-beaten track from the topics at hand in our class? I admit to feeling as if I've come radically late to the conversation, as an English major and poet with little academic training in gender and ethical theories per se, and sometimes fear that what I bring to our readings and discussions might be largely irrelevant in the context of the class. But I'm deeply interested and invested in transforming/radicalizing notions of ethics, and eagerly participating in troublemaking, even if the way I "take a walk" looks a little queer, if I can say that.
Any feedback or ideas or off-the-top-of-your-head references would be greatly appreciated. Look forward to seeing everyone tomorrow (if the snow stops) and to digging further into the incredibly thorough and helpful diablog!