Intersex People in the Past and Present: “Contemporary Advocacy in Historical Context”

Even if everything goes “right,” seemingly well-meaning efforts to “fix” intersex children violate their right to develop their own sexual identities.

Intersex is now in the public eye, in large part due to the efforts of determined advocates who have been working since the 1990s to change the medical standard of care for intersex children. (Lorie Shaull / Creative Commons)

When I first published Bodies in Doubt: An American History of Intersex in 2009, not many people had even heard of “intersex” (atypical development of genitals, chromosomes, hormones and gonads), though of course individuals have always been born with these traits. More than a decade later, much has changed. Intersex is now in the public eye, in large part due to the efforts of determined advocates who have been working since the 1990s to change the medical standard of care for intersex children.

Johns Hopkins University Press requested a second edition of my book because of the growing public awareness of intersex issues, which have gradually—in historical time, rapidly—entered the mainstream. Through television, as in the MTV show, Faking It, in new YouTube channels and podcasts by intersex people, and in YA novels that feature intersex characters, more and more people are becoming aware of how people born with intersex have been wronged by the medical community.

In fact, as I was completing the second edition of Bodies in Doubt, in July 2020, the renowned Ann & Robert H. Lurie Children’s Hospital in Chicago issued 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.

Bodies in Doubt is a historical analysis of the damaging “historic standard of care” that Lurie Children’s Hospital now regrets. In early America, there was no surgery to “correct” genital anomalies; people lived with whatever bodies they were born with, in whichever gender that most suited them—though not without worry that their difference would be found out, particularly if they sometimes crossed the gender divide in their daily lives.

It wasn’t until the 19th century that physicians began to perform surgical procedures on intersex people, typically so that their genitals matched the gender with which they identified. In this way, physicians promoted heterosexuality, hoping to guarantee that those uncertain of their own sex would not pair up with those of the “wrong” sex. Surgeries for women included removing an enlarged clitoris (“to prevent embarrassment,” one physician reasoned in 1930) to deepening a vagina to accommodate heterosexual sexual relations (“normal sex with your husband,” explained one 1970s doctor).

Physicians often pronounced surgical procedures successful when their patients had married—a sure sign of heterosexual triumph. Yet marriage has not been a good measure of success because it does not capture the physical and psychological harms that such procedures wrought. As I describe in the book’s second edition, physicians still 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 press gave me free rein in compiling the second edition—a blessing and a curse. I didn’t want to completely rewrite my book, nor could I incorporate everything that has happened since 2009. My interests had evolved during that time, and I knew I wanted to explore material I hadn’t considered in depth previously. For example, after writing the first edition, I had become increasingly engaged in medical ethics, teaching various classes on the subject and focusing particularly on the history of autonomy and bodily integrity. I decided to mine my old notes to see if I could glimpse physicians tackling the issue of informed consent with their intersex patients (Advice to readers: Never throw away your research notes!).

Accordingly, one new chapter in the second edition examines the role of bioethics as an emerging discipline in the post-WWII years. How could physicians justify their sometimes admittedly exploratory surgical investigations of unwitting patients’ bodies? How did they rationalize their overconfident pronouncements about their patients’ success and happiness? I could see how physicians side-stepped the bio-ethical principle of informed consent in the 1950s when they turned their attention to children who weren’t able to articulate their wishes.

Recent advocacy has focused on children’s rights. Since Bodies in Doubt first appeared, I have become invested in intersex activism and served on the board of interACT, the country’s largest intersex advocacy organization. I know people who have endured the surgical procedures that Lurie and Boston Children’s Hospitals are now ending, and their stories are harrowing. 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 “fix” intersex children violate their right to develop their own sexual identities.

Much historical writing, as in my first book, Damned Women: Sinners and Witches in Puritan New England, draws on old, often-examined documents to offer new interpretations. In other cases, historians gain access to new archives or previously unknown sources. My task, and my opportunity, in the second edition of Bodies in Doubt was different. Here the chronology lengthened toward the present, and medical responses and political debates took new turns. In this edition I sought to explain why it has been so difficult to challenge the medical establishment to revise its standard of care—the subject of another new chapter.

As knowledge of intersex and its controversies have become more prominent in American public life, some state legislatures, including those in California, New York and Rhode Island, have begun to consider laws to protect children born with intersex traits from unnecessary, irreversible medical treatment and to convince physicians to wait until children are old enough to meaningfully participate in such important decisions. I am thrilled that I had the chance to address today’s debates, and I hope that it helps new audiences put contemporary advocacy in historical context.

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Elizabeth Reis is a professor of medical ethics and gender studies at the Macaulay Honors College at the City University of New York. She is the author of Bodies in Doubt: An American History of Intersex, which will be published in an expanded second edition in July 2021.