Galileo's Middle Finger (6 page)

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.

 • • • 

I
N 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 parents’ 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.

Year by year, we saw more and more evidence of that possibility. In 2002, Jeffrey Eugenides’ novel
Middlesex
came out. At first, it wasn’t clear it was going to have much impact, but I knew when I looked at his book that I needed to pay attention to it. He credited my historical work in his acknowledgments, and his protagonist was a member of ISNA, the organization still legally registered to my home address. Very early in his book-tour cycle, I went over to one of Eugenides’ readings at an Ann Arbor bookstore. I stayed after the public reading to talk to the author one-on-one. He worried aloud that no one wanted to buy this book—no one wanted to hear about intersex. I told him I thought that pretty clearly wasn’t true, and that it would probably be OK. He alluded to the attributed shame he was getting for working on a book about this, and I sympathized, saying I was writing about conjoined twins and feeling like a freak. Look, I said to him, if we’re feeling this much shame just by writing about this stuff, imagine what the people really living with it are experiencing.

The next time I ran into Eugenides was five years later, in 2007, at the
Oprah
studio, when Oprah featured
Middlesex
on her book club. By then, the book had been awarded a Pulitzer. (I was brought on to the show as the “medical expert” because they couldn’t find any doctor who could explain intersex and sex development clearly to Oprah and her audience.) Not long after the 2002 Ann Arbor bookstore meeting, I could tell that Eugenides’ novel was going to take off, because it seemed that on every flight I took, I was seated next to a person reading
Middlesex.
And it wasn’t just young, gender-comfy people reading this book. It was old ladies and businessmen. (
Hermaphrodites,
I thought,
are a very marketable skill.
) And most important, doctors were reading this book, the doctors we were trying to change. I even heard from some who told me they were moved by this book in a way they had never been moved before—that they suddenly understood intersex to be one survivable part of a whole life. Here we had been feeding them real stories, but it was this novel that convinced them they needed to change their practices!