Galileo's Middle Finger (5 page)

Whenever I felt my energy starting to flag, the universe seemed to send me something to renew my sense of urgency. One day Aron found himself having to calm down a young woman who had just been told by one of Aron’s internal medicine residents that she was really a male pseudohermaphrodite—that she was really a
man
—because he had figured out that
she had testes inside
. Aron called to get from me the name and number of a representative of the Androgen Insensitivity Syndrome Support Group. Another day, I got a call from a nineteen-year-old man who had just found out he had ovaries and
a uterus inside of him
. One of his doctors was suggesting he get a “sex change” so that he could be a woman and have a baby. I knew just how badly that doc wanted that publication.

“Do you want to be a woman? Do you think of yourself as a woman?” I asked the young man.

“No,” he said, “but the doctor says because I have ovaries . . .”

“Look,” I told him, “I don’t let my ovaries tell
me
what to do. I don’t think you should let your ovaries tell
you
what to do.”

I especially remember sitting at work in my Michigan State University assistant professor office one day and out of the blue getting a call from a weeping pediatric nurse I had never met. She calmed down just enough to explain to me that they had a baby in their pediatric ICU who had been sent into surgery to make her genitals look more normal. The baby had gone into surgery healthy. The anesthesia had gone wrong, as it sometimes does in babies, and
now she was going to die
. This little girl was going to die just because her clitoris had been “too big.” And now her parents would have to live with that twisted memory of guilt, shame, and grief. I knew that story would never enter the medical literature. Surgeons rarely report when it all goes wrong. They have their own guilt, shame, and grief, typically left as unprocessed as the parents’.

 • • • 

D
AY BY DAY,
the Intersex Society became increasingly intertwined with my existence. When Bo decided to legally incorporate, she asked me and Aron if she could use our home address, because we had a stable residence and were actively involved. Upon incorporation, I became the first chair of the board of directors, and if I remember correctly, Aron became vice president. We didn’t expect him to actually do anything; we just needed a certain number of signatures, and we thought that having MDs on the board would help persuade the IRS to give us nonprofit status. Bo’s partner, Robin, took some other executive title. I started joking that our first task should be to work on the board member–to–bed ratio. The final addition to the board was another Michigan State medical faculty member,
Bruce Wilson
, one of the first pediatric endocrinologists to say we were right.

We worked with a small army of other intersex activists who were also out there pushing for change. Many of them, like Max Beck, Mani Mitchell, Emi Koyama, Hida Viloria, and Tiger Devore, told their own stories on television and in documentaries and spoke to any group that invited them. Early on, Bo gave me a handful of “
phall-o-meters
” to start handing out, a little tool developed by the intersex activist Kiira Triea. The phall-o-meter showed graphically how doctors decided whose phallus would be cut and to what length to make them
fit social norms
. It was a to-scale measuring stick that went from “just a girl” (for a small clit) to “fix it quick” (in between) to “phew, just squeaks by” (a barely acceptable penis) to “OK” to “Texan” to “Wow, surgeon!” (for the big ’uns). I handed these out on all sides and left them behind everywhere, between the pages of in-flight magazines, in the stalls of women’s bathrooms on campuses I was visiting, and in the hands of all the surgeons I ran into. The male surgeons just loved them.

Bo had taught me this blitzkrieg method. We simply took every opportunity that came along and sought out any others we thought might work. She encouraged me to keep working the academic angle, and I did, doing scholarship in support of the movement. The last chapter of the book based on my dissertation provided an
extensive ethical critique
of the modern-day management of intersex. That it had Harvard University Press’s name attached definitely helped. I spun off that last chapter as an article for the
Hastings Center Report
, the journal of the leading independent medical ethics institute. The
next book I published
was an edited anthology called
Intersex in the Age of Ethics.

For that collection, Bo and I wanted a front cover that showed the contrast between the monstrous medical image of intersex and the real lives of intersex people—to make the point that you never know who around you is intersex and the point that the medical approach is what makes someone a monster. We had realized how powerful images were in getting people to change their thinking. So we took photos that all the contributors—intersex and non-intersex—gave us of themselves, and put those, all mixed up, on the front cover. A few were bare-chested men; most were fully clothed. You couldn’t tell who was intersex and who wasn’t. For the center of the montage, we wanted a classic medical image—naked, eyes blacked out, against the grid—but I didn’t dare use a real image and reexploit someone. I can’t remember if Bo or the publisher suggested it, but one of them said to me, “Why don’t we do a picture of you, Alice?”

So
I paid a university photographer
whom I’d come to know fifty bucks to meet me at his apartment and photograph me naked standing in the “medical pose” with a band of paper meant to look like a hospital ID bracelet taped around my right wrist. He then used Photoshop to put a grid behind me and a black band over my eyes. He also blurred out my naughty bits. (I didn’t have tenure.) When my friends and students saw the book, they immediately recognized me. So much for the idea that the black band makes any difference! I just told them I do nudity only if the plot requires it.

The plot required so much. Time, money, and lots of personal effort to keep the activists from infighting due to jealousy, philosophical differences, and pent-up fury. And so much effort to keep Bo from falling into another black abyss of posttraumatic depression. Because I could write and speak well, I did one television show after another, quickly learning what to wear (no white and no small prints; lots of powder and bright lipstick; a serious look with a kind smile) and how to wrap a clear message around a killer story. I wrote newsletter material, teaching materials, and fund-raising appeals. I learned how to ask people, point-blank, for money to support us. Money was always short; Aron and I regularly dumped in infusions of cash, trying to keep enough in the till to keep Bo from having to do other work, so she could stay focused on ISNA. A sizable percentage of the donor list was made up of our personal friends and family members. Bo spent down her life’s savings as we pressed on.

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.