Surgery and secrets: taking the intersex community out of the closet

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When Jim Ambrose was nineteen, a doctor’s assistant handed him an envelope stuffed with a lifetime of medical records. When he opened it, his life changed forever. “I started reading them right there in the car and at the top it said: ‘Karyotype XY.’”

This came as a shock, because back then Jim was named Kristi, and believed he’d been born female. The truth, as it turned out, was more complicated.

People like Ambrose are born with what doctors call a disorder of sexual differentiation (DSD); in short, some newborns cannot be easily termed male or female at first glance. Intersex conditions, ranging from ambiguously defined genitalia (such as Ambrose’s case) to complex chromosomal and hormonal anomalies, affect roughly one out of every 2,000 births.

For decades the solution to this seeming dilemma was usually to cover up the differentiation through surgery and deception. When Ambrose was a few weeks old, his “underdeveloped” genitals were amputated; his parents were instructed to raise him as a girl, and most importantly, never tell him otherwise.

Though these procedures were sometimes accounted for with appeals to the child’s health (the belief that non-descending testes would become cancerous if not removed, for example), often they were more or less cosmetic in nature.

Babies had to be either male or female, the argument went; to allow ambiguity would be too traumatic. In theory, secrecy preserves the patient’s assigned gender identity. In practice the results vary, and if patients stumble on the truth they can be tormented by anger, confusion, and shame.

That’s why Ambrose started the Interface Project, a video blog compiling testimonials (reminiscent of the It Gets Better Project) from intersex people in hopes that shame and anger can be cured through community, sympathy, and honesty. No one, say Ambrose and fellow project founder Eden Atwood (a Montana-based musician who was also born intersex), should have to feel ashamed of their body.

Right now, Interface has only about ten testimonials, from contributors like California-based Bo Laurent (“They were confused and afraid and they didn’t know what to do with me,” Laurent says of the aftermath of her birth. “They told my parents to move to another town and not tell anyone”), and South African Nthabiseng Mokoena (“My mother told me, ‘I wanted you not to feel as hurt as I was after I gave birth to you. Not because I was ashamed of you, but because people put me in that position’”).

They’d like to have more, but speaking on camera can be a trying experience. “Some degree of handholding becomes necessary,” Ambrose says. So the project held a fundraiser in August (pop star Huey Lewis appeared), and they plan to travel with the proceeds so that they can collect stories themselves.

They hope that the project can foster visibility and a tangible sense of community. Maybe it can also foster debate over postnatal treatment for intersex conditions. Activists allege that non-consensual surgeries like the ones performed on Ambrose are criminal assault, while the medical community itself seems uncertain what to think.

In 2005, the American Pediatrics Association released a new consensus statement on treating intersex disorders, suggesting surgery in only the most “severe” cases and advising doctors: “[Though] it is generally felt that surgery for cosmetic relieves parental distress and improves attachment between child and parents, systematic evidence for this belief is lacking.”

But the statement does not constitute a guideline, and its recommendations are not binding.

Dr. Peter Lee, a pediatric endocrinologist and one the statement’s authors, argues that binding sanctions against surgery, like the ones most activists ask for, aren’t practical.

“A blanket moratorium does not consider the differences in varieties of DSD, nor consider the unknown impact of growing up with genitalia that are neither male or female. Such a moratorium would be social experimentation,” Lee told 429Magazine. Every case is too different to create ironclad rules for.

But he cautions that that doesn’t mean he subscribes to the medieval approach of the last century. “Forty years ago, any clitoris that measured over a certain limit was almost automatically amputated; that’s horrifying. Now there’s recognition that in many cases you can wait until the patient can decide.” Truth about the treatment should never be withheld from a patient, Lee says.

Alice Dreger, a professor of bioethics at Illinois’ Northwestern University and noted activist for the intersex community, argues that “corrective” surgeries are probably always unnecessary.

“It makes sense to assign children a gender, but you don’t need surgery to support it,” Dreger said to 429Magazine. “They think that you can’t survive with atypical genitals and that people will be driven into some form of isolation,” but that’s an outcome more common if steps are taken to “fix” a child’s body than if it’s left as is, Dreger explained.

Even though Ambrose’s parents never suggested anything unusual about his birth, he was still plagued by nameless doubts. “I was depressed. I recall a persistent grayness.” He quested into his medical history hoping to pinpoint some neuroses to account for it. “After I found out the truth, the conversation I had with my parents was very, very angry. I was looking at their helpless faces, and what could they say? They’d expected me to have a normal life.”

Ambrose says that as he grew older he began to empathize with the difficult position his parents were placed in. After the revelation, and a great deal of soul-searching, he changed his name, began testosterone treatments, and initiated surgeries to undo some of what had been done to his body.

He’s grateful to have had a supportive community of queer and transgender peers to support him, but he notes that being intersex is not a species of transgenderism. Though they face many of the same challenges, the two remain distinct communities.

“I’m thirty-five and I’m just starting to get my life together,” Ambrose says in his own Interface video. There, he has advice for confused or trouble parents of intersex kids: “You’re not alone. There are supportive communities all over the world. Isolation will kill them, but togetherness and bonding will save them. And save you.”

429Magazine

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