by Alice Dreger
Now and again, we caught a break. Someone would invite us to speak at a place where there was a doc with enough doubts that she or he would then sign on to help us. Someone with power would have an adult child who was gay or lesbian, enabling that powerful person to appreciate at the gut level the way that discrimination against sexual minorities manifests in every bit of life.
A big break came in 2000 when John Colapinto published the “John/Joan” story in his blockbuster book As Nature Made Him: The Boy Who Was Raised as a Girl. Colapinto’s work brought to national attention the story of one male child whom John Money had recommended sex-changing after the baby’s penis had been accidentally burned off during a medical circumcision at eight months of age. The patient, now known as David Reimer, had not been born intersex, as most of Money’s patients had been; David Reimer had been born a typical male, with an identical twin brother. But after his circumcision accident, the family was referred to Johns Hopkins and, on Money’s recommendation, the baby had been surgically and socially turned into a girl named Brenda. After all, a boy without a penis (or with a very small one) couldn’t grow up to be a real man! At least that’s what Money et al. had been saying for years. Money must have been thrilled when he encountered the Reimers: Here, in a set of identical non-intersex twin baby boys, was the perfect case to prove his theory that gender identity development depended primarily on genital appearance and upbringing. If one of the Reimers’ twin boys could be turned into a girl, this would be the Hope Diamond in Money’s crown.
Thanks to Money’s desire to use David Reimer to prove that gender is mostly a product of genital appearance and nurture, not inborn nature, Reimer had gotten caught in the Johns Hopkins intersex vortex and had had the same history of shame, secrecy, loss of function, trauma, and anger as many intersex adults. Importantly, Reimer also failed to prove Money’s theory. As little Brenda, he kept acting boyish, and upon being told the truth of his medical history as a teenager, he immediately declared himself a boy and socially became a boy again. Nevertheless, Money simply lied about the outcome, leading everyone to continue believing his experiment with “Brenda” had worked.
Although As Nature Made Him entailed great coverage of our work at ISNA, Colapinto’s account moved people for a reason we had come to resent: The public was ever so upset that a “real” little boy had been turned into a girl. They were upset about the sex-change of a non-intersex child and about having been led to believe that gender is a product of nurture, not nature. To us, the primary issue in these cases wasn’t the nature of gender. Yes, the reason all these kids—Reimer and his born-intersex cohort—had been traumatized was because of a wrong theory of gender that said that we can make you into a boy or a girl if we just make your body look convincing in infancy. But the trauma for most of these folks didn’t come from getting the wrong gender label as a baby.
Bo and I knew what the clinicians knew—that most intersex people kept the gender assignments they were given, whether surgeons made their genitals look typical for their gender or not. And we knew that people who changed their gender labels as teenagers and adults did not find misidentified gender to be the core of their suffering. The problem in intersex care wasn’t a problem of gender identity per se. The problem was that, in the service of strict gender norms, people were being cut up, lied to, and made to feel profoundly ashamed of themselves. Bo said it as plainly as she could: Intersex is not primarily about gender identity; it is about shame, secrecy, and trauma. Doctors were so obsessed with “getting the gender right” that they didn’t see that they were causing so much harm. If they could have obsessed less about gender identity outcomes in these cases and focused on actual physical and psychological health, they might have done a lot less damage. They needed to stop treating these cases as gender identity experiments and start treating them as patients.
But most people didn’t want to hear about shame, secrecy, and trauma when we talked about intersex. They wanted to hear about the nature-nurture debate. Just like John Money, they wanted to use intersex people in the service of their theory building about gender identity. All that happened when people started to take the nature of gender identity seriously was that docs stopped turning boys with micropenis into girls and started pumping them full of risky drugs to try to get their penises to grow bigger. The clitoral surgeries—those kept up.
It would be easy to fall into the belief that these were all evil doctors. Truth is, they were basically good people. They had been told in their medical training the same story the surgeon told me early in my work: If you don’t do this, these kids will kill themselves at puberty. Based on this mythology, they believed they had to do early genital surgeries. Bill Reiner, a urologist who had trained at Money’s gender clinic and who later turned against Money’s approach, told me that he’d once tried to find evidence that kids had killed themselves as a result of being left “uncorrected.” Like me, Bill couldn’t find it.
The myth of teen intersex suicide was part of what my friend Howard Brody, a physician-ethicist, took to calling the maximin strategy in medicine. When a doc “maximins,” she maximizes the number of interventions in the hope of minimizing the odds of the worst possible thing happening to that patient. You operate out of fear of the worst-case scenario. Howard had traced this in obstetrics, and had shown how obstetricians were actively harming mothers and babies during normal births in an effort to keep them from dying. They were throwing every possible intervention at them, because then, if the mother or baby died during a birth, at least the doctor had tried everything. It was just a natural coping strategy in a stressful situation. But when you looked at the aggregate evidence, the interventions meant to prevent the worst harm actually resulted in more net harm.
That’s what was going on with these intersex specialists. They were afraid to “do nothing,” as they put it. We said, “Don’t do nothing; call in mental health professionals to help with shame, fear, and grief.” But the doctors said they didn’t know whom to call. And it was true; Money, a psychologist, had popularized this whole system of care in his writings, but it had really been founded and disseminated throughout the medical world by Lawson Wilkins, the founder of pediatric endocrinology. Instead of teams of psychologists to help intersex people and their parents, there were only pediatric endocrinologists, who knew little of psychology except what they had been told: Gender is all about genital appearance; call the surgeon.
When I would ask treating physicians, “What is the goal of pediatric intersex treatment?” I was amazed at how often they could not articulate an answer. It was clear that they were operating from a combination of institutional inertia and an impulsive (beneficent) need to quiet down parents they thought might get upset. It would have been much easier if all these doctors had been evil. Instead, they were good—human, scared. They tried hard to write us off as evil, but when they met us, they realized that we were also good—and human and scared.
OK, so I’m not so sure John Money was good. He had used and abused so many of my intersex friends who’d had the misfortune as children to end up in his Johns Hopkins clinic that we called the place the Death Star. Money had known that David Reimer’s life had not turned out well, that he had never been a straightforward girl, and that as a teen he had reverted to being a boy. He had lied about and to Reimer and hurt many other people in the process. It was tempting to try to take Money down, to go after him personally.
But Bo was smart again. Even though the one time she’d met Money in person at some cocktail party, he’d started screaming at her at the top of his lungs, she decided that we would not engage in ad hominem attacks, not even against Money (except in private, over a lot of alcohol). She said if we take down an individual, the system has not changed. That person becomes a scapegoat, and nothing really changes. And she was right. Reporters would come to me and say, “Well, Dr. So-and-So says that he now knows John Money was wrong about gender, so now he agrees with you, and there are
no more ethical issues.” Meanwhile, Dr. So-and-So would be routinely performing surgery on baby girls with big clitorises and telling adolescent girls with testes that they had “twisted ovaries” that needed to come out, with no evidence for the supposed medical necessity or benefit of these approaches, especially when compared to the risk of harm.
But we were seeing signs that we were making progress. By the early 2000s, journalists started finding it impossible to locate a doctor who would say, on camera or in print, that we were wrong about anything. And they found more and more who were willing to say we were right. Articles and op-eds started appearing in medical journals calling for outcomes research to determine what had really happened. Medical students were rising up against being taught the old model; we heard of them handing their professors our literature and demanding that they be taught by someone whose ethics were in keeping with what they were being taught in their ethics classes. Our activist allies were being increasingly invited not just to local churches and synagogues to speak of their lives, but to medical centers, too. Little by little, Bo and I were being invited to give not just talks at medical events, but to deliver grand-rounds presentations at children’s hospitals and keynotes at medical conferences.
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IN MY OWN SCHOLARSHIP, I branched out from intersex in response to a question from Bo: How much of the reaction to babies born (as she was) with ambiguous genitalia is about fear of sex, and how much is about fear of abnormality? I decided to look at conjoined twins, thinking that by studying them I could control historically for sexual attitudes. Silly me! I soon found that conjoined twin babies, like intersex babies, had gotten tangled up in adult sexual phobias. As I researched the history, it became clear that conjoined twin separations, rather than being based on evidence of what would leave the twins best off, had often been based on an adult sexual fear: If you left conjoined twins to grow up conjoined, they might never have sex! Or they might even have sex! I remember bells going off when I ran across one news report of conjoined infant sisters from Guatemala; a UCLA surgeon told a reporter that when he made the final cut that separated them, he announced to his team in the OR, “We now have two weddings to go to.” Hello. Happy weddings as a measure of whether the medical intervention was justified? That sounded very familiar.
Once I assembled the data about the history of medical responses to conjoined twinning, I was shocked to realize not only that sex phobias were sometimes driving separations, but also that in many cases separation likely left twins worse off, with more impairment and shorter life spans. Were they better off psychologically? Who could tell?—because, as with intersex, though surgery was often done for putative psychosocial reasons, no one was really looking at long-term psychosocial outcomes of those left alone or of those “fixed.” Yet if we looked across a broad span of history at what was known about people left conjoined, it turned out that being conjoined was often probably better than being left with massive surgical damage (or, um, left dead). Conjoined twins old enough to give their own views said was that they were OK with their condition; they understood that it wasn’t normal for other people, but it was normal for them. Only one set of conjoined twins in history, Ladan and Laleh Bijani, has ever elected separation for themselves, and even in that case, there is reason to believe the twenty-nine-year-old sisters may not have had an accurate understanding of the level of risk associated with separation of head-joined twins like them. Just after the sisters’ deaths from surgery, the lead surgeon involved told reporters, “At least we helped them achieve their dream of separation.”
About halfway through my study of the surgical treatment of conjoined twinning, I realized that, if I let the evidence lead me where it seemed to go, I was going to have to start arguing against some conjoined twin separations—not all, but ones that looked as though they weren’t in the patients’ best interest as far as the evidence went.
That’s when I realized I’d better grow my hair out.
By then it had become clear that some of the resistance among the doctors we were arguing with over intersex was their perception that Bo and I were really just champions of the “gay agenda.” We were really just there to recruit their infant patients, for the toasters I hear you get when you convert a certain number of people to being gay. We were read as queer. Hell, Bo was queer, and clear about it. (I was often presumed to be her romantic partner.) So our intersex “agenda” was being read by many doctors as really being about lesbian, gay, bisexual, and transgender (LGBT) rights. To be fair, their reading was not without cause. Intersex had quickly gotten wrapped up in the LGBT rainbow. Many early intersex activists identified as gay or lesbian—or simply queer—and their political consciousness about LGBT rights had caused them to be politically astute about intersex, too. Non-intersex LGBT activists had also helped the intersex-rights movement from the start, because they immediately understood this to be an issue of discrimination against a sexual minority. And homophobia was very clearly motivating a lot of the old clinical regime. How else could you explain outcomes studies that measured not whether women could have orgasms after clitorectomy, but whether these women were getting penetrated by men?
Still, it was highly unlikely that we could undo homophobia in a short time, so how were we going to get around the clinicians’ resistance? It became clear that it might help if we tried as hard as we could to take the perceived gay agenda off the table. That meant I had to stop being read and easily written off as a lesbian feminist. If I was going to argue for something as radical as letting girls keep their big clits and sometimes letting conjoined babies live until they died naturally, I was going to have to look less socially radical and try to act less aggressive—less “manly.” So I grew out my hair and invested in some pretty dresses and even pantyhose and pumps. I started categorizing surgeons into two classes: those powerful enough to be worth shaving my legs for and those not. I started carrying around an index-card reminder to myself: “Talk slower. Don’t shriek.” To my mother’s delight, I even started wearing lipstick off camera. When one of my old friends discovered me in this drag, I confessed that, yes, I had, in fact, become a whore for social justice.
And it helped. It also helped that I started cracking a joke at the start of every medical talk: “I’m not a doctor, but I sleep with one.” It helped that we started talking with doctors about the very real stress they were feeling. It helped that we started praising them effusively for every baby step forward. It helped that we introduced one reformer to another, so that they had some peer support in their little revolution. It helped that we made them feel special, invaluable, and liked. We started paying attention to relationships, having meals with the people we were trying to change, or at least coffee. It helped that we started treating them as humans.
And it really helped that—unlike most of our putative academic political allies, who wanted to just spew cute slogans and academic postmodernist horseshit—Bo and I mastered all the scientific and medical evidence and language we could. We learned enough biochemistry and anatomy to keep up with every question or argument thrown at us. We asked clinical researchers for data in advance of their publications so as to sound one step ahead of the curve. When doctors plagiarized from my or Bo’s work, rather than fighting for our citation, we shut up and smiled and let them believe they had come to it on their own. We pushed as many people as we could into the limelight and stayed back more and more, to make our ranks look as big as possible. With Bo’s expertise in computers, my writing skills, and our joint ally building, we looked very big.
At some point, Bo and I had the discussion about whether, if the evidence showed people were better off with cosmetic genital surgeries done in infancy, we would accept it. We came to the same conclusion: If most of the women who’d had clitoroplasties as babies (and who truly knew what had happened to them) said they were satisfied that that had been the right choice, and if most of those who’d been left with large clits regretted their parent
s’ choice to forego infant cosmetic clitoral reduction surgeries, we would accept that infant cosmetic clitoral reductions worked to improve quality of life. In other words, we were clear that we were in this for people’s well-being, not for some particular identity outcome.
This put us at odds with a lot of people in the movement. Many had come to see intersex as a core type of human identity, something that could only be solidified by surgery but never taken away. Bo had actively supported that identity formation; she had needed people to feel it to motivate them to fight. We didn’t know of any successful rights movement that wasn’t based on an essentialized shared identity (even if just constructed in politically expedient ways). Nevertheless, Bo and I decided we’d be perfectly happy if sex anomalies became so accepted that there simply was no intersex identity. We would be perfectly satisfied when the data showed that—with or without surgery—affected adults felt they had been treated justly. Our issue was not that funny-looking genitals held some special magical life-giving power that was being tragically taken away by surgeons. Our issue was not that hermaphroditic identity was being disappeared. Our issue was that women with big clits left intact seemed quite a bit better off than those who had been operated on. On the rare occasion when we met a woman with a big clit who had opted for surgery as an adult, she never regretted her parents’ choice to leave it alone, and she always regretted her choice to have it shortened. We took that as further evidence that the problem was not identity as male, female, or intersex. It was the fact that the medical interventions didn’t work: They didn’t leave people better off.
Bo and I agreed that, if we put ourselves out of business—if, because of our work pushing for an evidence-based approach to intersex care, everyone born with a sex anomaly ended up feeling really great, so there was no need for an intersex sociopolitical identity, an intersex rights movement, or an ISNA—that would be just fine with us. We weren’t in this for lifelong identities as intersex activists, as leaders of the “intersex community.” The goal really was our goal. This again distinguished us, in ways I only later understood, from many activists, who bank on always being able to keep fighting over an identity issue. We wanted to retire. Our aim was to plant enough seeds of change in the medical system that change would continue without us.