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’.
• • •
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