Galileo's Middle Finger (4 page)

Given the way intersex could always threaten a sexist two-gender society, this approach of “cleaning up” nature’s sexual “mistakes” persisted in American medicine, leading in the 1950s to the key collaboration at Johns Hopkins University of Lawson Wilkins, the founder of pediatric endocrinology, and the psychologist John Money.
Together Wilkins and Money
formalized this cleanup approach to sex anomalies. Modern medicine now sought to reinforce the “optimum gender of rearing” by early management of children born with sex anomalies by means of “sex-normalizing” surgeries, hormone treatments, delicate euphemisms, and
sometimes lies
.

This, then, was the system of concealment that led one day to my mother’s remark to me about my childhood friend: “Oh no, we never told him.” This was also the system that led to a lot of really angry intersex adults who discovered that they had been harmed by the medical care meant to “save” them and who knew the same basic system was still being used on children who would likely grow up as hurt and angry as they were. In the early 1990s, a
core group
of these people formed the intersex rights movement I eventually joined. Some of these intersex adults had been physically harmed—left with damaged sexual sensation, incontinence, or repetitive infections. Many had been psychologically harmed—left with a sense of having been too monstrous for their parents to accept as they came, of being sexually freakish, of being fountains of familial shame. All were left with a burning desire to try to save others from going through what they had.

I knew about the nascent intersex rights movement as I worked on my dissertation in Bloomington, but I mostly ignored it. My graduate school professors had taught me that history is about the dead. Yet shortly after I started to make public my research findings, I found myself in dialogue with Bo Laurent, the founder of the
Intersex Society of North America
(ISNA). As I recall, I first talked to Bo by e-mail using her public activist name, Cheryl Chase, a name she had hastily chosen as a nom de guerre early in her activism. As soon as I learned that another intersex activist named Bo Laurent lived in the same region of northern California as Cheryl Chase, I tried to bring Bo and Cheryl together. She politely explained I was trying to introduce her to herself. I easily fell into the habit of publicly referring to my work colleague, the leader of ISNA, as Cheryl, and privately calling my new friend Bo.

Bo was fascinated by my findings and immediately proved herself to be a voracious and intelligent audience of intersex history. Besides being geeks and history buffs, Bo and I shared what I later realized was a rare trait in activists: a belief in evidence even when it challenged our political goals. While it would have been convenient for Bo if I could have told her that no one in the nineteenth century sought surgeries to make their own genitals look or act more normally, she readily accepted my data that
a few people did
. She also readily accepted my conclusion that we couldn’t know much about why a few people in the 1800s seemed distressed about their own anomalous sex
while most seemed fairly unconcerned
. The data was incomplete, and rarely could it tell us about something as obscure as the psychological history of an unnamed, one-time patient who probably died before we were born.

I realized as soon as she told me her personal history that in Bo I had met someone who actually represented in the flesh that old Victorian compromise with nature that I had documented in my dissertation. That is to say, because of the fears of my dear Victorian doctors,
Bo was to be counted
as a true hermaphrodite simply because she had been born with ovotestes. (An ovotestis is usually kind of like an ovary wrapped up in some testicular tissue. And no, even if you have one, you can’t make both viable eggs and sperm.) Even though genetics, endocrinology, and other sciences had traversed a thousand miles from the Age of Gonads to the age of ISNA, that Paleolithic terminology based on gonadal tissue was still in place. (
Bo and I later successfully worked to get rid of it
once and for all.)

Bo had also been born with ambiguous genitalia
. The doctors were so upset when that baby had come out, in 1956, that they kept sedating the mother while they figured out what to do. After three days, they finally let Mrs. Sullivan wake up and go home with the baby the Sullivans decided to call Brian—a boy understood to be healthy but sexually defective. They also sent Mrs. Sullivan home with strict instructions not to let anyone know that this child had a malformed phallus and a vagina. Mrs. Sullivan understood that she had to do all the diaper changes herself, and hide the disaster forever.

When Brian Sullivan was about a year and a half old, a team of doctors at New York–Presbyterian Hospital discovered via exploratory surgery that Brian had a uterus and ovotestes. The doctors realized that these organs might mean that they could turn this genitally unconvincing boy into a fertile girl, so they completely removed the phallus of the child, who at that point, on their strong recommendation, became Bonnie Sullivan. When she was eight, without anyone explaining anything to the bright and perceptive patient, Bonnie Sullivan was sent back to the hospital and her testicular tissue was removed. (This later surgery, removing the testicular portion of the ovotestes, may well have prevented Bonnie from getting a form of testicular cancer. We have never argued against that kind of surgery, which evidence really did show was lifesaving.)

When she became a sexually active lesbian as a teen, Bonnie Sullivan quickly figured out that she was missing a clitoris and, more important, missing sexual function. She could not have an orgasm. To make a harrowing long story short, eventually she sought out people like herself, found them, and
marshaled her lesbian feminist political consciousness
to fight the system that had taken so much from her. In 1995, as she broke with a past that had never really been under her command, Bonnie Sullivan
took on a new name
. Bo was a short form of Bonnie. She chose her last name, Laurent, as a tribute to the deaf activist Laurent Clerc and in remembrance of her own grandparents, who had been deaf. Bo understood that intersex had to go where deafness had gone: from the realm of the “defective” to the realm of rights. She started looking for peers and allies anywhere she could find them.

Not long after we started communicating, Bo asked me—as she asked perfect strangers all the time—to help her change the medical system for treating intersex. At first I resisted. As I explained, I was just a historian, somebody who deals with the past, and a newly minted one at that. I also thought it would be a little odd for me to get involved in a movement for rights that did not directly affect me—although having been raised with a brother who is identified as black in an otherwise white family, I did get that civil-rights movements need anyone with the power to help. Hearing Bo’s gentle plea, I also found myself remembering something my mother had said to me before I left for Indiana to study the history and philosophy of science: “I hope you study philosophy, because maybe then you can at least help people think more clearly. History is just about what’s already finished.” The implication: there’s no social good in being a historian.

In any event, Bo pushed me, in her typically blunt yet soft-spoken way, to consider putting my feminist money where my mouth was. Just look, she said, at what today’s medical books say. That was easy enough. Right around the time I had been told hermaphrodites are not a marketable skill, I had fallen in love with a medical student in Bloomington. I had moved in with Aron a few months later, when he had to start his clinical rotations in Indianapolis. As a consequence, my history books were on one side of our little apartment’s living room, and Aron’s medical books were on the other, so, on a break one day, I pulled his books and looked up the standard of care for genital anomalies. This would have been in 1995.

Basically, what Aron and his classmates were being taught, in the
latest medical books
, was this: If a baby is born with a large clitoris, she might turn out to be a lesbian, so you have to cut down her clitoris. If a boy is born with hypospadias—wherein the opening of his urethra is not at the tip of the penis but on the underside or down near the scrotum—he will not be able to write his
name in the snow
next to other little boys, and then he might turn out gay. Therefore you have to do a “corrective” surgery to make sure he can pee standing up. Mind you, this surgery failed so often that doctors had a special term for the men in whom it failed. They were called hypospadias cripples, because life is tough with a surgically scarred, infection-prone penis, but, the urologists insisted, you had to
try
to get that boy to pee standing up.
Or else.

Huh?

When Aron got home from the hospital that day, I showed him the relevant passages in his books. I then asked him if he had written his name in the snow next to other little boys. “No,” he said, putting both his hands to his cheeks in a mockery of the book. “Do you think I might be gay?”

We were both pretty stunned.
OK,
I thought,
I’ll help Bo.
I’ll go to these doctors with her, and we’ll reason with them. We’ll use data from history and medicine. We’ll say, Look, this system was developed before gay and lesbian rights, before an appreciation for women’s sexual health, before modern medical ethics. There’s no evidence to support this heterosexist system of shame and secrecy as good for the patients, and there is evidence, albeit anecdotal, that this approach is unnecessary, unsafe, ineffective, and deeply harmful. Parents can learn to raise these children as boys and girls without cosmetic genital surgeries; we knew of some who had. Intersex children can be told the truth about their bodily differences, and they can grow up to decide for themselves what they want to do with their own bodies in terms of optional medical care.

And to all this the doctors would say, “Oh, gosh, yes, we’ve been meaning to fix this. Thanks!” And it would all change.

Aron kept shaking his head at me. “Medicine is not like that,” he’d say. “Medicine is often not rational and not evidence-based.” But he’d say it not so often nor so firmly as to discourage me. Aron has a theory that, for the sake of progressive change, people should sometimes be left in a state of productive naïveté, and that was his prescription for me in this case. So I plunged ahead, thinking reform of the system would take about six months, maybe twelve at the outside.

Bo must have figured out early that she needed to keep me motivated, so she did something really smart. She brought me around to meet as many intersex people as she could and made me listen to their stories. I started listening with a tape recorder and often found myself losing it, breaking down crying. In the medical literature, all of these people were “lost to follow-up.” They had dropped out of treatment and were invisible to medical surveillance, so what few outcomes studies there were (and there were almost none into adulthood) did not count them. No one really understood what these people had been through. I mean, a few people had heard these individuals’ stories one-on-one, but no one except maybe Bo and a couple of other intersex people had heard how this population had suffered collectively.

There was
Martha Coventry
, who had had most of her “enlarged clitoris” cut off when she was six, because her parents were worried about gender confusion. There was
David Cameron Strachan
, who as an adult had been diagnosed with Klinefelter’s syndrome (XXY chromosomes) and had been shot full of testosterone by a doctor who maybe had thought that upping his sex drive would turn David from gay to straight. (Instead, it had made David uncomfortably hairy and horny, and he’d headed right to the San Francisco Castro District, just as HIV was arriving there, too.) There was a woman whom I’ll call Beth Lawrence, who had learned that she’d been born with testes when she had opened a sealed envelope that a doctor had told her not to open but to give straight to her next doctor. Beth had opened it in the parking lot outside her doctor’s office and found a medical journal article about her, her sisters, and her cousins, none of whom had been told they had testes. The article featured a large photograph of Beth as a teenager, standing naked in a medical setting, with her head cropped off—I suppose to keep her from being recognizable as Beth Lawrence.

Of course, the pose and the crop also kept her from being recognizable as fully human. Beth still had that journal article, which she kept in the original envelope. Sitting in her backyard with her and Bo and looking at the article, I realized something bizarre: When we’d first met, I had insanely expected that Bo would walk up to me naked in black and white with her eyes blacked out. That’s how the medical journals had led me to think of contemporary intersex people. Even though I had been conversing with Bo by e-mail, I had subconsciously expected her to show up naked with a helpful grid behind her, her arms and legs splayed so as to show off her proportions to the medical student
gazing upon her in the book
.

The fact that intersex adults actually meet you in full color, with their clothes on, with families and lives and mortgage debt and a lot of pain and trails of therapists who didn’t even believe their unbelievable histories—this all just made me more and more upset. Pediatric endocrinologists and pediatric urologists came to my invited academic lectures and told me they felt sure
their
patients were all doing fine. That just made me disoriented. Where are these happy patients? I asked. They told me they could not say. Privacy prevented it, they said. Ask your happy patients if they will talk to me confidentially, I said. Oh no, they said. We wouldn’t want you upsetting them. “But,” one assured me, “I know my patients are doing great because I get invited to their weddings.”

“That’s sweet,” I answered, trying to hide my sarcasm. “How many have you been invited to?”

“Um . . .” He hesitated. “One, I guess.”

Bo also introduced me to a few people she’d found who had grown up with ambiguous genitalia, having gone “uncorrected” for various reasons. There was one woman whose sexually sensible mother had decided there just wasn’t any good reason to follow the doctor’s advice to shorten her young
daughter’s noticeably long clitoris
. There was another who had been too sickly as a child to be sent into elective surgery and so had escaped, growing up unharmed and ultimately pursuing a career in medicine. A third I met because she came to hear a talk I was giving in her town. This woman came up to me after my lecture to say she thought she might be intersex, because
her clitoris was bigger than most
. “How big?” I asked. She showed me her little finger and said she used her clit to penetrate her partner’s vagina, quietly adding that they both enjoyed it.