Galileo's Middle Finger

by Alice Dreger

  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!

  • • •

  DURING THE BIG BLOOM in popularity of Eugenides’ book, in 2004, Bo and I sneaked in together to the intersex session of the American Academy of Pediatrics Section on Urology, in San Francisco. We got a friendly doc to register us as “family” so that we could have name badges and slip in through security without being noticed on the regular registered participant list. We sat together and quietly listened to what the big guys were saying. They were tangled up in doubt. Progress!

  Tina Schober—a surgeon out of western Pennsylvania who’d become a pariah for associating with us—had actually been invited to speak. The UCSF surgeon Larry Baskin was admitting that they weren’t really sure about where they should be cutting the clitoris, because the nerves were turning out to be located where they hadn’t been expected to be, so that the outcomes were unclear, unpredictable. Indianapolis surgeon Richard Rink, who had always advocated “total urogenital mobilization”—ripping out everything that didn’t seem right to the doctor and rebuilding a girl’s genitals from scratch using Frankenstein stitches—was now expressing doubt about what the whole process was really based on. Of course, he then proceeded to say that, as a consequence, he was now just advocating “partial urogenital mobilization.” But we were thrilled to hear Rink say that the most important consideration was “how to preserve function.” He even told his colleagues, “I think there is a very important question: no one has proved it is a problem to have a large glans or a large clitoris, [so] should we really do anything about this?”

  Afterward, we went up to say hello to the various panelists, and a few seemed shocked when they realized we had been there listening. I heard one person ask about what security thought they were doing at the door, but most of them were now cordial, though uncomfortable. Bo and I were not, after all, with the extremists on the picket line outside, anticircumcisionists who were covered in mock blood, calling doctors butchers. We were being taken very seriously.

  However, because we were being taken seriously, we were taking crap from certain intersex activist quarters. I was an especially easy target of the identity-card-carrying activists. I was not intersex, I was not queer, I was not a clinician, so what was I doing there? In the story of the intersex rights movement, I was just plain funny looking. Some accused me of being a kind of mole—of “being in bed with the doctors.” When people put this charge to my face, I asked whether they realized that being in bed with the doctors provided a lot more opportunities to tickle their nuts, so to speak, than simply yelling at them from outside the window. In fact, I admitted, I found the window-yellers useful, precisely because they made us look sane and reasonable. (I even donated cash to their groups to keep them yelling.)

  And we were sane and reasonable.

  But by then, totally exhausted. Eight years into our collaboration, Bo and I were both well on our way to being out of steam. When you think you’re Good fighting Evil, you can continue fighting well past the point that would otherwise count as spent. But Bo and I had come to realize we were not Good fighting Evil. We were dealing with well-intentioned but myopic people who weren’t seeing what we couldn’t help but see when we took the long view in weighing the evidence.

  Fully understanding how tired Bo was of it all, in 2004 I found myself having to push her to attend a hearing of the San Francisco Human Rights Commission that had been organized by David Strachan and Thea Hillman. The commission was investigating whether the treatment of intersex children constituted a human rights abuse. I thought this could be pretty scrumptious—I was fantasizing about writing our press release with the headline “Human Rights Abuses at U.S. Children’s Hospitals.” I talked Bo into going, and we went with Robin, Bo’s wife. (Although at that time they could not be married legally because they were both identified by the state as women, Bo and Robin had decided a couple of years earlier to have a private wedding. They asked Aron and me to officiate.)

  When it came time for public testimony at the Human Rights Commission, I got up and said a bunch of things, and so did other people, and everyone kept wondering, when would Bo get up and say something? When would the most prominent member of the movement speak? She finally realized she had to—there was no way out of what she saw as a waste of time. She’d told me the docs would never listen to the San Francisco Human Rights Commission, no matter what they said, so she had not prepared anything to say. By then I had developed the habit of leaving index cards in my bag so that I could quickly write down what I thought we should say. I grabbed some cards, started scribbling, and wrote something like this:

  What the Human Rights Commission has done here today is to recognize me as a human being. You’ve stated that just because I was born looking in a way that bothered other people doesn’t mean that I should have been excluded from human rights protections that have been afforded other people. . . .

  Bo got up and went to the microphone in the front of the little hearing room. Glancing down at the index card, she started to speak. And then she suddenly stopped speaking. I turned to Robin and, groaning, whispered, “Oh no, she can’t read my handwriting.”

  Robin answered, taking my hand, “No, Alice, no. She’s crying. She can read what you wrote, and she’s crying.”

  Robin and I had never seen Bo cry in public before. I wasn’t even sure I had seen her cry ever.

  I realized at that moment that, after almost a decade together, we had finally gotten to the core of the matter. What I had learned from her was what I had written down on that card: that all she had ever wanted was simply to be treated as human. All of these people were simply asking to be given basic rights that were automatically accorded to all other humans: the right not to have your sex changed without your consent, the right to be told the truth about your medical history, and the right to be treated as an equal member of the human family without having to first pass through an operating theater.

  We weren’t asking for a new, third ge
nder category for our society, nor for a belief in innate gender identity, nor anything else so culturally radical. We were just asking for children and adults who had been born with sex anomalies to be recognized as fully human, deserving of decent medical science, and deserving of basic human justice.

  The good news was that a lot of people, including the doctors, were truly starting to get it.

  CHAPTER 2

  RABBIT HOLES

  BO AND I managed to limp along together for about one more year after the Human Rights Commission hearing. In that last year of work together, we coordinated and published the first detailed consensus-based clinical guidelines for intersex pediatric care, along with a handbook for parents. By the time we finished, leaders from all of the major diagnosis-specific intersex support groups, clinicians from every relevant specialty, parents of affected children, and adult intersex activists all had signed on to the collaboration. Soothing these forty-some people into compromise over the phone for these texts damn near killed me. But when the two handbooks came out and were passed around in medical settings, even the old guard muttered appreciation. Although we lacked adequate data to know that our model was better for patients than the old way, we put forth an approach that seemed most likely to minimize harm, given what we knew historically and scientifically: For newborns with confusing sexual anatomy, assign a best-guess preliminary gender label of boy or girl, with the understanding that no surgery is required for a gender label. Provide medical and surgical care known to be needed to lower serious risk of illness or death, but hold off on all elective interventions, including elective genital surgeries, until the patient can decide. Provide ongoing psychosocial support by well-trained professionals for children and families. Above all, tell people the truth.

  Right about the time we were getting ready to publish our handbooks, the big North American and European pediatric endocrinology groups decided to hold a conference on intersex care to arrive at their own “consensus.” Bo was given an invitation to the meeting, as were several clinicians now firmly on our side. After talking with each ally who was invited, I put together a confidential list of talking points and gave it to each. As we hoped, a high-level international medical consensus emerged: The specialists agreed that they needed to work harder to collect and then follow long-term-outcomes data, to provide team care featuring dedicated psychosocial professionals, to find ways to tell patients and their parents the truth without making them feel overwhelmed and helpless, to stop counting patients who grow up gay or change their gender labels as medical failures, and to hold off on at least some genital “normalizing” surgeries until the patient could decide. Although these guidelines would not end surgical normalizations of genitals in early childhood right away, this consensus did mean that parents (and their sons and daughters) finally might get serious psychological support and be told what we know and don’t know about intersex. Some of the doctors even started talking about shame, which had always been the real problem in intersex care. Moreover, they were all talking about needing to do better science to figure out what medical care really helps and what harms.

  You’d think I’d have been dancing in the streets at this point, but like Bo, I was seriously worn down. For ten years, I had put up with the hardships of activism, and now the friendship with Bo that had long sustained me had started to evaporate. ISNA, once our joint baby, had morphed through its success into a sort of miserable small business, something neither of us felt especially excited about. A lot of pushing and pulling ensued. It turns out that having been through a war together doesn’t necessarily mean you come back home able to make dinner together. I finally quit.

  Relinquishing ISNA to Bo felt like losing a beloved stepchild in an unhappy divorce, and losing Bo as an intimate friend felt even worse. It didn’t help that just a few months before leaving ISNA—back when I was still kidding myself that I could keep working with Bo if I could just find a way to make my workload manageable—I had also quit my tenured professorship at Michigan State University. With a lovable four-year-old at my knee, I was tired of trying to do everything the university wanted of me. (A funny thing about writing manuals for parents of intersex children: You start thinking a lot about what’s missing from your own parenting.) I just wanted to work from home, doing patient advocacy for victims of medical trauma, writing histories, and limiting my son’s day care to six hours a day.

  Then, like a tsunami after an earthquake, just a few months later, Aron was suddenly pulled from his medical-faculty position into an associate dean’s chair at Michigan State, putting him essentially in charge of medical education at the university. While this meant plenty of family income to support me in my unconventional career move, it also meant that my rock of ten years had become the medical school’s quarry just when I needed his grounding most.

  Fortunately, not long after I’d turned in my resignation letter to Michigan State, a couple of colleagues had talked me into taking a part-time faculty position at their place, the Medical Humanities and Bioethics Program at Northwestern University’s medical school in Chicago. The program’s director promised that I could work almost entirely from home and basically do whatever work I wanted in exchange for putting the program’s name on it. I could also have the unit’s great faculty to lean on as colleagues. Still, with Aron suddenly absent, my job officially requiring almost nothing of me, and ISNA gone from my days forever, I found myself thoroughly unmoored—stumbling around as if I kept forgetting I’d had one leg amputated.

  I found myself doing what any self-respecting straight woman does when she’s disoriented by an identity-rocking emotional smash-up: I listlessly rearranged playlists and bookshelves while talking on the phone to my gay friend Paul. Paul Vasey is a Canadian scientist who spends part of the year studying the fa’afafine, biological males who live as women on the tropical island of Samoa, and part of the year studying girl-on-girl monkey action in the snowy mountains of Japan. (The Weekly World News once featured the macaque monkeys Paul researches under the headline LESBIAN MONKEY SHOCKER! Paul told me it was actually a pretty good article.) Not long after the time I was calling him three times a week for company, Paul and his colleagues conducted a formal study of “fag hags”—straight women like me who have many gay male friends. They showed scientifically what Paul demonstrated in my life that year: that gay men make their close women friends feel better about themselves. Being a hard-driving scholar like me, Paul knew—and told me bluntly—that I just needed a big new project, one that would feed my hungers for intensive historical research and social justice. Soon enough, he’d lead me into one: the Bailey transsexualism controversy.

  • • •

  WHEN PEOPLE ASK ME how transgender is different from intersex, I usually start by saying that intersex and transgender people have historically suffered from opposite problems for the same reason. Whereas intersex people have historically been subjected to sex “normalizing” hormones and surgeries they have not wanted, transgender people have had a hard time getting the sex-changing hormones and surgeries they have wanted. Both problems arise from a single cause: a heterosexist medical establishment determined to retain control over who gets to be what sex.

  Aside from that huge shared problem, intersex and transgender actually are quite different. By definition, intersex involves having some anatomical feature that makes one’s body atypical for males or females; it’s primarily about anatomy—your body. By definition, being transgender means rejecting the gender assignment that was given to you at birth; it’s primarily about self-identity—your feelings. Although a small minority of intersex people do reject their birth gender assignment, most don’t, and most transgender people weren’t born intersex. In the great majority of cases, medical scans won’t detect any intersex feature in a transgender person’s body. Nevertheless, many people believe that transgender must be a special form of intersex involving the brain. Here’s that popular, comforting narrative: Everyone is born either m
ale or female in the brain. But a person might accidentally be born with the “wrong” sexual anatomy—be born with an essentially female brain in a male body, or vice versa. If this happens, the person will know from early childhood that a terrible mistake has been made. If fortunate, such a person will eventually be able to come out of the closet and use surgery, hormones, and the legal system to end up with the body and social identity she or he should have always had.

  Although there is very little science to support it, this has become the most popular explanation of transgender, probably in part because it is the easiest one for uptight heterosexuals to accept. Some people appear to switch sides, but everyone can rest assured that they didn’t really switch; they just finally got sorted out correctly by having their internal gender realities externalized by transsexual hormone treatments and surgeries. In practice, this story of transgender can function as a kind of get-out-of-male-free card for men who seek to become women anatomically. When that card is played, the comforting narrative of “true selves” is preserved. Everybody really has just one true gender from birth to death, so gender seems ultimately very stable. Now, no one really gets out of being male for free—the physical, financial, and personal costs of transition are pretty high—but this narrative does give a person a way out to which other people can’t easily object, at least in America, where the quest for the true self counts as admirable, even sacred.