In Bodies in Doubt, Elizabeth Reis traces the changing definitions, perceptions, and medical management of intersex (atypical sex development) in America from the colonial period to the present. Arguing that medical practice must be understood within its broader cultural context, Reis demonstrates how deeply physicians have been influenced by social anxieties about marriage, heterosexuality, and same-sex desire throughout American history. This second edition has been comprehensively updated to reflect recent shifts in attitudes, bioethics, and medical and legal practices.
NOTCHES: In a few sentences, what is your book about? Why will people want to read your book?
Bodies in Doubt is about the medical management of people born with intersex variations (atypical sex development) from early America to the present. Most of intersex management, past and present, has been done in the service of erasing intersex traits and promoting heteronormativity. At the simplest level, a person is diagnosed with intersex (also called disorders/difference of sex development in the medical world) if they are born with sex-atypical genitals, gonads, hormones, or chromosomes, characteristics that upend the sex and gender binary upon which we have long insisted. People born with bodily differences that fall outside the bounds of “normal” have suffered tremendously, as physicians have tried to “fix” their bodies and their psyches to fit into a narrow conception of acceptability, most especially to prevent homosexuality.
Elizabeth Reis: To this day, physicians offer parents genital “repair” for their children with the misguided supposition that “fixing” their bodies will lead to happier lives, even though countless intersex adults have expressed the wish that medical authorities had not intervened. The surgeries themselves can cause scarring, incontinence, sterility, the need for ongoing hormone treatment and can sometimes be—in effect—sex reassignment surgery if one grows up to reject the gender surgically assigned in infancy. But even if everything goes “right,” such well-meaning efforts to alter children’s genitals violate their right to develop their own sexual identities without outside medical coercion.
In the second edition of my book, I added two new chapters and a new preface and introduction. In 2009, when the book was first published, not many people had even heard of intersex. Now there might be some misconceptions, but at least it’s on people’s radars. I think my book will appeal to readers who care about gender identity and sexuality as well as those who want to read about how our collective desire for “normal” bodies has encouraged medical intervention and surgical solutions, which have often done more harm than good. In fact, genital surgeries performed for cosmetic, as opposed to valid medical, reasons are today considered human rights violations when they are done on infants who cannot consent, and advocates are working to stop these procedures.
NOTCHES: This book engages with histories of sex and sexuality, but what other themes does it address?
Reis: I was drawn to the topic in the late 1990s when I taught a class called “Transgender History, Identity and Politics” at the University of Oregon. We read Alice Dreger’s book, Hermaphrodites and the Invention of Sex, which focused on Great Britain and France, and we debated in class whether the topic of intersex belongs in a class about transgender issues. That question sparked my interest, and I began to do some research focused on the United States. I found that with digital technology and using the right key words, I could access physicians’ published case reports about their patients. And my research confirmed my sense that intersex and transgender issues should be studied together. Though the two sets of interests are distinct, the goals of intersex and trans people converge in one important respect: all want to be afforded the dignity to make decisions for themselves about these deeply personal matters regarding their bodies.
Even in my first book, which was about Salem, Massachusetts, I’ve been interested in how people have defined and maintained the gender binary, and so the two projects aren’t as different as they might seem. In Puritan New England, definitions of “womanhood” and “manhood” were forged in a religious context; with intersex, physicians defined the gender binary using biological constructions as well as social ones. It turns out that much of what we think we “know” about biology is not accurate. For example, we are taught that all boys (and only boys) have XY chromosomes, and all girls (and only girls) have XX, but intersex people challenge those simplicities. To take just one example, babies born with androgen insensitivity syndrome (AIS) have XY chromosomes, but they look like typical girls because their bodies are insensitive to androgens. Physicians have struggled to ascertain people’s “true” sex: Should it be based on chromosomes? Hormones? Genital appearance? Gender identity? And sometimes they have encouraged people to switch genders, particularly if it meant that their sexual desires would then be considered heterosexual.
NOTCHES: How did you research the book? (What sources did you use? Were there any especially exciting discoveries, or any particular challenges, etc.?)
Reis: To do my research, I analyzed case reports I found online as well as medical treatises that addressed scientific understandings of sexual anatomy in different time periods. One challenge I thought about in the beginning of my research was whether I should be trying to make my own diagnoses based on how physicians described people’s bodies. I quickly realized that this was impossible and unnecessary. First, I’m not a medical doctor and I haven’t examined the people. More important, I recognized that physicians’ diagnoses did not constitute “the truth” about patients. Often, they based their medical assessments on social evidence, inflected by cultural prejudices, as when one doctor believed his patient to be more female than male because of the patient’s “fondness for gay colors, for pieces of calico, comparing and placing them together.” I came to understand that the point of my book wasn’t to identify medical diagnoses, per se, but to analyze how physicians were trying to fit people into the predominant gender binary, which was their only way of understanding sex and gender.
NOTCHES: And what did you add in the second edition?
Reis: I am so grateful that Johns Hopkins University Press asked me to do a second edition because I was able to adjust to the changing landscape of intersex politics. In addition, my interest in medical ethics deepened during those ten years, and so that influenced my approach as well. I became a member of the ethics committee at the major hospital in Eugene, Oregon, and I’ve continued to do that work in a New York hospital now that I live in New York. I started teaching classes on medical ethics, which inevitably include lengthy discussions about patient autonomy. My whole book was about how patient autonomy had been ignored and how physicians often decided on a person’s gender, as well as their genital anatomy—altering it irrevocably—based not on the patient’s comfort and desires, but to satisfy what the physician thought was their “true” sex. But what I hadn’t investigated in the first edition was how bioethics as an emerging discipline after WWII affected physicians’ medical decisions. And so, one of the new chapters in the second edition explores why these explicit ethical considerations didn’t have the impact that we might have expected in the post-war period.
The second new chapter discusses an ongoing controversy in the intersex world: what to call “intersex” and why naming and categorization matters. I decided to write a chapter on whether congenital adrenal hyperplasia (CAH), should “count” as intersex, a question that emerged directly from ongoing intersex activism. While I was working on the second edition, in July 2020, the Ann and Robert H. Lurie Children’s Hospital made an unprecedented apology:
“We empathize with intersex individuals who were harmed by the treatment that they received according to the historic standard of care and we apologize and are truly sorry.”
Lurie announced it was halting nonconsensual infant surgeries and admitted that “the medical field has failed these children.” Boston Children’s Hospital soon followed suit, pledging to discontinue certain “normalizing” genital procedures, as did New York City Health & Hospitals. Though it represents a major step forward, the victory wasn’t complete because the hospital decided to consider CAH separately, promising to study the issue further at a forthcoming conference. Should CAH be considered under the intersex umbrella? In fact, CAH is the most common intersex trait with genital difference, and children with CAH have been subjected to the same “normalizing” genital procedures that other intersex patients have endured, and so I don’t see any good reason to consider it distinctly when it comes to hospital policy. In fact, doing so might unwittingly undermine informed consent, a major tenet of medical ethics, as parents of children with CAH could remain unaware of the overwhelming criticisms of early infant surgery promulgated by human rights groups.
NOTCHES: How do you see your book being most effectively used in the classroom? What would you assign it with?
Reis: First, if anyone assigns it, I’d be happy to Zoom in to talk with their students! I think it works well in class because it’s not necessary to assign all of it. The professor can lecture on the early material (to see how intersex was handled legally and culturally, before professional medicine stepped in) and then have the students read from the 19th century forward, for example. Students appreciate learning about struggles to assert bodily autonomy because so many are facing similar questions in their own lives.
If I were going to assign my book in a class, I’d pair it with personal accounts of those living with intersex traits. Since the 1990s when intersex advocacy work started, so many people have written their own stories! Most have faced the kind of infant surgeries that I wrote about in my book, and they have attested to the physical and emotional damage that’s been done. I like to assign Georgiann Davis’s work; she’s a sociologist and identifies as intersex, and she’s done comprehensive interviews with physicians, parents, and intersex people. And the shorter essays by Pidgeon Pagonis and Sean Saifa Wall convey the complexity of medical trauma that can only be captured by reading first-hand accounts:
- Chapter from Georgiann Davis, Contesting Intersex: The Dubious Diagnosis (2015)
- Pidgeon Pagonis, “First Do No Harm: How Intersex Kids are Hurt by Those Who Have Taken the Hippocratic Oath,” Griffith Journal of Law and Human Dignity (2017)
- Sean Saifa Wall, “Navigating This Life as a Black Intersex Man,” in The Remedy: Queer and Trans Voices on Health and Health Care (2016)
NOTCHES: Why does this history matter today?
Reis: It’s hard to know how much effect one’s work is having in the world, but I like to imagine that parents who find my book will feel empowered to resist the supposed fix that the medical world is offering them. I’d like them to consider the hubris of physicians who confidently assume they can determine the right course of action in treating children with intersex, despite the uncertainty that surrounds the outcomes of surgical intervention and more important, the unknowability of a child’s developing gender and sexual identity. I’d like parents and physicians to understand that surgically intervening and “correcting” a child’s genitals prevents them from developing their own sense of sexual self-authorship. In other words, the desire to “normalize” intersex bodies has significant costs. I think if parents can love their child despite (or even because of) their difference, that love can afford that child the essential opportunity of choice and self-determination—to opt for surgery later or perhaps to forgo it altogether. I want parents (and kids) to know that “normal” encompasses a range of bodies, and that having different genitals is OK.
NOTCHES: Your book is published, what next?
Reis: I don’t have any plans for another book right now. I’m very involved with intersex advocacy on various fronts, and I’ll continue with that work. I think that this is a moment for big changes regarding intersex in the medical world, and I’d like to be a part of that.
Elizabeth Reis is a professor at the Macaulay Honors College at the City University of New York where she teaches courses on Medical Ethics, Reproductive Technologies, and Disability Studies. She graduated from Smith College and received her Ph.D. in History at the University of California, Berkeley. Reis is the author of Bodies in Doubt: An American History of Intersex; Damned Women: Sinners and Witches in Puritan New England; and the editor of American Sexual Histories. She has published essays in the Hastings Center Report, Journal of American History, Perspectives in Biology and Medicine, the New York Times, and TIME Magazine. Reis is a member of the Ethics Committee at New York Presbyterian Weill Cornell Hospital and an editor of nursingclio.org, a collaborative online journal focusing on the intersection of gender, history, and medicine. She is a former board member of interACT: Advocates for Intersex Youth and a current board member of Talia’s Voice: Projects for Patient Safety.
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