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(PHOTO: LINEARTESTPILOT/SHUTTERSTOCK)

Born With Ambiguous Genitalia

• December 11, 2013 • 12:00 PM

(PHOTO: LINEARTESTPILOT/SHUTTERSTOCK)

The biggest issue is not surgery, nor hormonal treatments, nor even the criminal lack of psychological support. The biggest issue is shame, and how no one deals with it in a way that lets people know there is nothing to be ashamed of.

It was one of those messages I get occasionally, this time from a man who had suddenly realized we were just a few blocks away from each other. The writer’s father was at a nearby Northwestern hospital, suffering from a terminal cancer.

“While trying to pass some time I went to ISNA’s Web site only to discover that it was no more. [The Intersex Society of North America] basically saved my life. Wonderful people such as yourself, Cheryl Chase, Anne Fausto-Sterling, etc., have no idea how much of a difference [you made] and how many lives you have deeply affected. THANK YOU! It would be an honor meet you and shake your hand.”

I offered to meet the next morning at the local tea place. And then I started wondering, as I often do with these out-of-the-blue communiqués, if this message was a fake. Was I being set up?

Jim’s message made me suspicious because he was obviously a man and yet he said that he was a survivor of androgen insensitivity syndrome. AIS is a condition in which a human with XY (male-typical) chromosomes and testes develops along a feminine or intersex pathway because his or her cells lack receptors that ordinarily respond to androgens, the masculinizing hormones. Almost no Americans living with AIS were raised as boys. People with complete AIS (cAIS) are born essentially female—female in genitalia, and even less masculinized in terms of their brain than average women like me, since average women produce and respond to the androgens from our adrenal glands. So people with cAIS are inevitably raised as girls.

Jim told me about going to a urologist for follow-up care, only to hear the urologist say to the nurse, outside the door, “I don’t deal with this shit.”

And among those with partial AIS (pAIS), men who had obvious ambiguity at birth but who escaped sex change in infancy are really rare; for more than 50 years, most doctors have recommended that XY babies with pAIS and ambiguity be “reconstructed” genitally as girls. Surgeons alter their genitalia to look more female-typical, and take their testes out. Starting at puberty, these children are given estrogen treatments. I knew of a couple of guys with pAIS who had been raised as girls and had become men as adults, but they were rare. Rarer still were those raised as boys.

But the minute I saw Jim, I knew he was real. I knew he was real because he started crying, and couldn’t talk. It was a reaction I’d seen before among people with disorders of sex development (DSD) who had been too closeted to meet another person with their condition, but who could get up the gumption to ask to meet me. I served as a way out of the closet, and so I represented the first human they came upon when they opened the door. I always tried, in my reaction, to signal simply, “Yes, you are a fellow human, and I am glad you are here.” I always have trouble not crying myself.

I gave Jim a hug, and waited for him to be ready to talk. He began by telling me again that I had saved his life with my work. I said what I always say: “It has been my privilege.” Which is to say: Well, duh, honey, who wouldn’t save your life if she could?

Over the course of the next hour, Jim told me his story. (I relay it with his permission.) He was born with ambiguous genitalia—with hypospadias (where the opening of the urethra is on the underside of the penis), with a smaller-than-average penis, and a herniated testicle. Against doctors’ advice, his parents raised him as a boy. The doctors, of course, had recommended sex reassignment, as was standard. His parents did not resist because they were radical; they resisted because they were terrified and young and I’ll bet they didn’t understand why you would take a baby with testicles and make him a girl.

But back then, doctors believed, per the psychologist John Money of Johns Hopkins, that a boy such as Jim couldn’t grow up to be a “real” boy—straight, tough, and manly. Money believed doctors could more “successfully” make such children into girls, a process that in Jim’s case would have involved castration, removal of penile tissue, surgical construction of more female-looking genitalia, and a lifetime of lies.

Jim did get the lies, and then some. As a child, besides hernial repair, he had been subjected to hypospadias surgery as well as some penile “reconstruction.” He told me the surgeries went OK, all things considered. The surgeon had not been overly ambitious. (I’m not sure I expressed to him just how lucky he was.) At puberty, without telling him his diagnosis or medical history, they shot him up with testosterone—trying to make him manlier—leading to unwanted breast growth. (High levels of testosterone can convert to estrogen.) Jim then had surgical breast reduction.

Still, they didn’t tell him what was going on. He just knew he was different, and that he was supposed to be ashamed. Jim told me that he hadn’t gone to college out of fear that someone might find out he was different genitally. This is the reasoning some surgeons still use for “surgical reconstruction” of genitalia—fear of someone being found out to be sexually atypical—but it doesn’t occur to these surgeons that the problem isn’t the atypical genitals, it’s the shame and bullying. I told Jim, “Your genitals weren’t the problem that kept you from college; the shame and the locker rooms were the problem.” He nodded.

As an adult, Jim had one of his testes out, arising from a medical concern. This reduced his natural level of sex hormones, and he started struggling with depression. I don’t think this is a coincidence; I’ve heard from enough people who have had depression after testicle removal that I think there is some association between sudden drop in testosterone and depression. Unfortunately, doctors can’t study this well in the DSD population, because historically they have been too ashamed to talk honestly with their patients about DSD.

Jim told me about going to a urologist for follow-up care, only to hear the urologist say to the nurse, outside the door, “I don’t deal with this shit.” I told Jim I had heard similar stories from other people with DSD—of one woman who heard the nurse say, “The hermaphrodite is in Room 2,” of another who read her chart upside down and thought it said, “Patient has not been told she has AIDS” when, she learned much later that it actually said, “Patient has not been told she has AIS.” I told Jim I knew that this kind of treatment of people as medical monsters was worse than any surgery could ever be. “Soul-crushing” was the term I offered. He agreed.

Eventually Jim had gone and got his own medical records, to find out what had really happened to him. He uttered a sentence I must have heard 10 times from 10 different people by now: “I went out in the parking lot and started reading.” In Jim’s case, he discovered he had pAIS and that his parents had resisted sex reassignment. All alone, he read the diagnosis of “male pseudo-hermaphrodite.” It was like being kicked in the gut. Although he had not been personally treated by Money, he felt clear that he had suffered the abuse of Money’s messed up approach to sex anomalies.

Now 50 years old, Jim has found a terrific adult endocrinologist, a woman who isn’t a specialist in DSD, but who gets that if she has a patient who needs her to learn about his DSD she needs to learn about it. She put him on a supplement to replace the testosterone he lost from the removal of his testicle. Almost immediately he started feeling better—more energetic physically and emotionally.

Jim has been married for many years to a woman with whom he’s raised a child. I could tell from his tone how much he loves his wife and daughter. He observed to me, “If I’d been raised a girl, I guess I’d be a lesbian, and that’d be OK, though it’s more difficult I guess, with our culture.” He told me about how happy he and his wife were when “Don’t Ask, Don’t Tell” was repealed.

Jim confessed to me he had had insomnia the night before—what with his father hospitalized—and so he’d been up much of the night reading my website. He said that he knew, from my website, that some people had objected to the move from talking about “intersex” to talking about “disorders of sex development.” But, he said, “I love the new term, DSD.” He said it captured his experience, that what he has is a medical condition. He doesn’t have double sex, or double gender, as people seem to think when they hear the term “intersex.” He has a DSD.

I asked Jim if I could write up his story. I told him I wanted people to understand what we tried to impress upon people through our work at the Intersex Society, what I’ve tried to impress through so much of my work: That the biggest issue is not surgery, nor hormonal treatments, nor even the criminal lack of psychological support for families like his. That the biggest issue is shame, and how no one deals with it in a way that lets people like Jim and his parents know there is nothing for them to be ashamed of.

When I got back to my office, I wrote to two other Jims to ask them to talk to the newest Jim in my life. One Jim I was writing to also has pAIS. He’d been raised a girl, and had become a man a few years ago. The other Jim had hypospadias, and had been through a gazillion “corrective” surgeries, out of the concern that he should pee standing up, like a “real” man.

It is no exaggeration to say I find myself adoring all three Jims. I fantasize someday the three Jims will all meet, and share an utterly shameless hug.

A postscript: While Jim and I were emailing back and forth after meeting, just after I finished a draft of this, Jim sent a note:

“Dad passed away at 9 last night. We’re at peace. Sad, but at peace. His final gift to me was the strange turn of events that allowed me to meet you. Although we never spoke of my condition, he always introduced me as, ‘This is my boy and no one could ask for a better son.'”


This post originally appeared on Bioethics Forum. It is republished here with permission.

Alice Dreger
Alice Dreger is a professor of clinical medical humanities and bioethics at Northwestern University's Feinberg School of Medicine. She has written for The New York Times, The Wall Street Journal, and The Washington Post.

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