by Alice Dreger
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 dr
ive 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.
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’.
• • •
DAY 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, ag
ainst 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.