When Caitlin Childs first heard about South African track star Caster Semenya, who was asked to submit to a gender-verification test after her gold-medal win at the World Athletics Championships in Berlin last month, she braced herself for the deluge of ill-informed media analysis. She didn’t have to wait very long.
“There was a lot of dehumanizing language tossed around about Semenya,” Caitlin says. “The word hermaphrodite was used a lot, which is pretty offensive. It was upsetting to see all of these people pop up who seem to think they have the right to speculate about what somebody else’s body looks like.”
“I live a very regular life. I have kids. I’m a Realtor. It’s a wonderful thing... that our genitals are not placed on our foreheads.”
Caitlin is a 26-year-old community organizer from Atlanta, a brunette with a wide smile and a confident voice. And like one out of every 2,000 people, she was born with an intersex body. Intersex, or DSD (Disorders of Sex Development), is more complicated than most people think. Not just a single variation, it actually encompasses a wide variety of medical conditions involving bodies not considered “standard” for either male or female. Conditions like congenital adrenal hyperplasia, an endocrine disorder in which the body has too many (or not enough) sex steroids, which can influence the appearance of genitalia. And androgen insensitivity syndrome, which can cause people born with XY chromosomes (male typical) to appear feminine.
Despite the fact that intersexuality is much more common than generally reported, however, except for brief news sensations like Semenya—and recent speculation about singer Lady Gaga—hardly ever does anyone think about intersex people. But now, perhaps for the first time ever, an intersex person is making the evening news, and intersex activists think this just might be a defining moment for their movement.
Many are using the opportunity to speak out. “Intersex bodies should not be treated as though they are a sickness that needs to be cured, nor should [Semenya] face social stigmatization for the narrow-mindedness of some,” read one typical blog post. Op-eds across the globe have condemned the public debate as snarky. And Semenya herself declared her pride in her physicality. "God made me the way I am, and I accept myself,” she told South Africa’s You magazine. “I am who I am and I'm proud of myself.”
“There is nothing wrong with having an intersex body, we’re just another variation of the human possibility,” says Caitlin, who’s been outspoken on the issue since first hearing the term for the first time at a conference she attended at 18, which she cites as a turning point in her own activism. “Even for me, I was older, but I was still pushed to do a surgery, but I resisted that and I feel very lucky to do that.”
Janet Green, who more readily identifies with the term DSD, works with Accord Alliance, an organization of health-care professionals and advocates that launched last March with the goal of promoting a new standard of care for people with DSD. Janet says most intersex people—at least those that aren’t world-class runners—live pedestrian lives. “I live a very regular life,” she says. “I have kids. I’m a Realtor. I do lots of things with my time that have nothing do with advocacy. It’s a wonderful thing for everyone’s self-perceived inadequacies or differences that our genitals are not placed on our foreheads!”
The intersex-rights movement seeks the same things most civil-rights struggles seek: mainstream acceptance, equality under the law, the right to safely be “out.” And, oh yeah: They don’t want to be called “hermaphrodites.”
“The term ‘hermaphrodite’ is stigmatizing and confusing,” says Alice Domurat Dreger, a professor of clinical medical humanities and bioethics at Northwestern University who is cited regularly by intersex individuals and advocates. “It usually suggests to people that someone has all the organs of males and females—but that is not physically possible. The medical profession came to a consensus about three years ago to get rid of all terms based on the root ‘hermaphrodite’ (including ‘pseudo-hermaphrodite’) because they are stigmatizing and confusing.”
But perhaps the No. 1 goal of the intersex-rights movement is literally the right to exist. Every day in hospital maternity wards, intersex babies are born to freaked-out parents who’ve never even heard of such a thing, parents in a highly emotional state who are offered the immediate opportunity to surgically alter their child. Reducing the number of these surgeries is something intersex activists see as fundamental to their cause.
“Sometimes the word intersex doesn’t help either,” says Janet, who has counseled confused new parents. “And the fact that the word has ‘sex’ in it, that’s double jeopardy. Particularly for parents of a newborn who hear that word for the first time, it’s so alarming. People just don’t know what to do with that.”
Caitlin, who was diagnosed with a DSD at age 15 (as if adolescence isn’t fraught enough), was old enough to have a say in how the medical establishment treated her, and successfully fought against being subjected to any sort of surgery. Navigating the issue with her parents was another story.
“Her initial emotional reaction was, ‘Oh, did I do something to cause this thing to happen?’” Caitlin says of her mother, who she’s very close to. “But she realized pretty quickly that that was about her and not about me. She comes to see me speak, and since she works as a therapist, I think it’s really helped to educate her to be a better therapist.”
The fight against the knee-jerk inclination to conduct surgery at birth is both medical and social. For one, since almost all such surgeries create female, not male genitalia for the child, this can be extremely distressing for kids who feel male once they start growing up. The surgery has other lifelong impacts, as well—some research has shown that 20 to 30 percent of these surgeries have resulted in a dramatic loss of sexual sensation.
“We’re trying to take a lot of the alarm out of it, just by saying to everybody—even people in the medical community—to slow down and not rush to ‘fix’ something right away,” says Green. “The classic case is for the child to be swooped up and put in neonatal care. But we are not our genitals, any of us, whether our bodies are ‘right’ or not. Let parents bond with their baby, and don’t create this panic around the idea that your child isn’t right.”
This focus on medical care, and building a holistic support network of family and knowledgeable medical professionals, grew out of a movement that has not hesitated to take to the streets. Intersex Awareness Day, celebrated on October 26, grew out of the first public intersex demonstration in Boston in 1996, where the American Academy of Pediatrics was holding its annual conference. Their demand was that the AAP stop treating intersexuality as a birth defect that can be corrected, outgrown, and forgotten.
But one movement intersex advocates are not sure they want to be automatically lumped in with is the gay-rights struggle. For one thing, that all intersex people are gay is one myth intersex activists hope to dispel. As a medical condition, DSD has no real bearing on sexual attraction, and in fact, when the now-defunct Intersex Alliance was formed in the 1990s, some of its members resisted being thrown into the LGBTQ acronym.
“At the time there was talk about adding the ‘I’ to that alphabet soup,” says Green, “but ultimately our goals were more about bringing some understanding to our medical care, especially as things have settled down from being an activist movement to an advocacy movement.”
As for Caitlin, who identified as queer before she identified as intersex (a word she heard for the first time at age 18, three long and confusing years after being diagnosed with a condition she didn’t fully understand), being “different” has more than a few advantages. “I don’t menstruate, and I think that’s pretty great,” she laughs. “It’s not something I ever lose any sleep about.” And her dating life is not nearly as difficult as you might imagine, since Caitlin is both outspoken and proud about her identity. “Honestly if it were a problem with somebody, that would be a good way to weed them out. I’m happy in my skin, in the body that I have.”
Joseph Huff-Hannon is a Brooklyn-based independent writer and producer, a 2008 finalist in the Livingston Award for Young Journalists, and a 2008 recipient of a James Aronson Award for Social Justice Journalism. See more of his work here: www.josephhuffhannon.com.