I first met Elizabeth Reis at a conference about intersex several years ago, and we became fast friends. Lizzie served on the board of interACT, the country’s largest intersex advocacy organization, when I was the board president, and though neither of us are on the board anymore, we both have continued our activism in various ways. We sat down for a Zoom interview recently to talk about the newly released second edition of Lizzie’s book, Bodies in Doubt: An American History of Intersex.
For readers coming to it for the first time, Bodies in Doubt is a history of the medical management of intersex (atypical sex development) from early America to the present. Lizzie analyzed historical medical journals and doctors’ case reports of those born with atypical genitalia that often made their sex difficult to determine. Many of these individuals lived much of their lives without needing medical attention; when they did see a doctor (often for something unrelated to intersex), physicians wanted to make sure that a person’s professed gender identity aligned with heterosexual desire. In other words, doctors worried that someone who wasn’t sure of their own sex would partner with the “wrong” sex. Adults were difficult for physicians to deal with because they had already formed their gender identity. So, in the 1950s, when John Hopkins University Hospital psychologist John Money suggested “fixing” children’s bodies in order to avoid later problems, his ideas took off. We know from countless intersex people today that surgically and hormonally altering children is not a good idea; there are lasting psychological as well physical consequences (scarring, incontinence, sterility, and enforcing the wrong gender, for example), and today’s advocates are working to stop nonconsensual intersex surgeries on infants and children. The second edition of Lizzie’s book includes two new chapters that look at the bioethical principles as well as the politics of what’s going on today in this regard.
Georgiann: What brought you to the study of intersex?
Lizzie: I first got interested when I was teaching a class in 1998 on transgender issues at the University of Oregon, and I had included Alice Dreger’s book Hermaphrodites and the Medical Invention of Sex on the syllabus. Some of the students in the class asked me why I thought that intersex issues belonged in a transgender class. We had a very intense and interesting discussion about that, and that got me thinking about the history of intersex in the U.S. Dreger’s book focused on France and Britain, and at the time, there wasn’t any published research on the history of the medical management of intersex in this country. In the 1990s, it became possible for historians to access digital sources. I could enter various keywords in American Periodical Series, for example, and find doctors’ published case studies from as early as the 19th century, which became the foundation for the first edition, published in 2009. So my specific interest in the topic developed directly from my teaching.
Georgiann: What would you say is the biggest historical lesson regarding the treatment of intersex people that we still haven’t learned?
Lizzie: The first thing that comes to my mind is the nature of different kinds of evidence. In history we don’t call our evidence “data,” and in science writing they do, but it’s basically the same thing: it’s the information—the facts or articulated claims—that you’re pulling together as the basis for your arguments. As a historian, I found countless intersex adults saying that these surgeries performed on infants and children without their consent were misguided and wrong, human rights abuses, etc. That to me constitutes an abundance of evidence. But scientists looking for double-blind studies as their data see my kind of historical evidence as insufficient, just disgruntled, anecdotal stories from people who have been wronged. To me, this is a lesson that we can learn: there are varying kinds of evidence, and a first-hand account from a person who experienced something is a historian’s goldmine. As a historian, listening to people’s voices is key, and I would love it if scientists honored first person accounts because it might give them a different perspective about the way they interpret their data.
Georgiann: How did you decide what to add for the 2nd edition?
Lizzie: I wanted to explicitly address the topics that I’ve been thinking about (and sometimes annoyed by!) for the last ten years. One of the new chapters reflects my growing interest in bioethics. I wondered if some of the foundational bioethical principles that emerged after WWII affected physicians working in this field, a subject that I hadn’t considered in the first edition. Here, I also discuss the question of “data” and how it’s often used to defend the medical agenda. The other new chapter looks at a controversial debate in today’s intersex politics: which conditions should count as “intersex?” Despite the recent legislative efforts and hospital bans on certain nonconsensual infant procedures, some parents still want these done for their children, and so they claim that their children aren’t “intersex,” merely that they have “external genital anomalies.” I explain why this is disingenuous.
Georgiann: How might your book help today’s intersex advocates?
Lizzie: I think it’s good for activists to understand that these issues didn’t just start the day before yesterday and to have a context, especially to see the long trajectory of how medical authorities have thought about bodily difference over time. It’s also helpful to see how even though medicine has tried to impose its prescriptions on people’s bodies, people have resisted, though the resistance might have looked very different in an earlier era. Even in the 19th century, people felt bulldozed by medical authority, and they’ve sometimes said so. My favorite example is a sentence I found in a doctor’s case report where the physician wrote, “The patient stubbornly refused” when the doctor suggested changing genders as an adult. The patient had lived 32 years as a man, and even though the doctor was convinced that the patient was “really” a woman because he had internal ovaries, the patient clearly resisted, overcoming pressure from the physician to change.
Georgiann: You mentioned doctors wanting people to change genders, which seems very different from today when, for the most part, doctors do not encourage people to transition. In fact, transgender people have to jump through all sorts of hoops to find gender affirming care. Can you comment on that?
Lizzie: You’re right, Georgiann. Historically, physicians often suggested that intersex adults change genders because they thought that they were “really” male or female based on their gonads. In fact, sometimes doctors downright ignored people’s sense of their own selves and thought they were mistaken in their own identities. But they couldn’t force them to change their whole way of life, obviously. Ironically, when transgender people sought medical care in order to transition (in the second half of the 20th century), physicians were reluctant to let them. To these doctors’ minds, trans people were born “normal” and they wanted to do something that seemed unreasonable, whereas for intersex people, physicians were eager to “correct” their bodies to match the gender that physicians thought they should be.
Georgiann: Your scholarship and advocacy have made waves across disciplines from history to sociology to gender studies and bioethics, which as an academic I deeply admire. However, as someone who was born with an intersex trait, I am most thankful to you for approaching intersex as an “outsider” who has normalized intersex for so many people and their families. Not many historians can say that their work is read outside of the classroom by activists and parents trying to do right by their children. I saw some parents reading your book about two weeks ago, and I told them to reach out to you. Even sociologists don’t usually get so connected to the community they study for so long. I think that’s what is so powerful. Having someone who’s an outsider and doesn’t have a dog in the fight brings something unique to parents. It has a different resonance. I think it also props up intersex activism as well. It’s very rare for that to happen! So for that I say thank you. How does it feel to you to be so deeply connected to this community?
Lizzie: I’m practically in tears by that compliment, Georgiann! Thank you! It’s incredibly gratifying to know that my work is reaching a wider audience of people who I hope it will empower in some way. At the very least, parents who read the book can know that they have a history, that they’re not alone, that babies with intersex traits have always been born, and that all kinds of support is available. They’ll also learn that the bioethical principle of “respect for persons” is on their side. When it comes to issues involving genitals and reproduction, people should be able to decide for themselves how they want their bodies to look and function.