ON A MONDAY MORNING THIS PAST SUMMER, MARISSA ADAMS is telling me about her plans for the future. They are bubbling out of her as we drive to Johns Hopkins’s Bayview Medical Center in her red Honda Fit, its back seat a thicket of table legs and frames in preparation for her move to a new apartment next month. Adams, 25, wants to finish college — she has three semesters left, after some stops and starts — and go on to graduate school in psychology. She wants to be a therapist, or possibly a psychiatric nurse. And, of course, she wants to meet someone. “I can’t wait to be engaged one day,” she says not long after I climb into her car, complimenting the ring on my left hand. “I want it to happen so bad. I hate being single.” In her free time, she scrolls through dating apps, looking for women she’d like to get to know over coffee or Chinese food, since she’s not a big drinker.
But before all that, there’s the reason we’re driving to the hospital today: Adams is looking for a doctor who will at least attempt to address the effects of the genital surgery performed with her parents’ permission when she was 18 months old — surgery that was meant to make her body more conventionally female, and that she wishes she’d never had.
Adams has the giant, bright blue eyes of a kewpie doll, which give her a faintly vulnerable air of surprise. Her manner, on the other hand, is straightforward, even admirably blunt; in our second conversation, she described what doctors had made for her as a “useless, fake vagina.” This new surgery, if she has it, will be the third time she or her parents have tried to revise the outcome of the original operation. Later, when I asked why she wanted to have another surgery after so many negative experiences, she paused. “I think I’m a very strong-willed person,” she said. “I’m determined to get what I want.”
I met Adams through InterACT, an advocacy organization for young people who are intersex — meaning they were born with some combination of chromosomes, hormones, gonads or genitals that defy social expectations of sex, including the expectation that sex is dichotomous. “Intersex” is a broad umbrella that is often used to encompass dozens of variations, from unusual karyotypes, such as XXY, to hormone insensitivities that can cause a person with XY chromosomes and internal testes to develop as an externally typical female.
The question of who exactly counts as intersex isn’t a simple one. Like Adams, a small number of infants — often estimated at 1 in 2,000 — are born with noticeably atypical genitals. But under the most expansive definition, intersex people constitute up to 1.7 percent of the population. This larger number includes many intersex traits that go undiscovered until puberty fails to occur in adolescence, or until infertility raises questions in adulthood. And it accounts for the fact that some intersex people are never diagnosed. (The 1.7 figure also includes groups that are frequently labeled as intersex but would prefer not to be: One organization for parents of kids with congenital adrenal hyperplasia — a potentially life-threatening disorder in which the adrenal glands don’t produce the right balance of hormones that regulate the body — argues that CAH shouldn’t be classified with other intersex conditions at all.)
For a long time, most intersex people thought of their physical differences as something akin to a disease. Indeed, rather than using the label “intersex,” most physicians and many parents still prefer to talk about “disorders of sex development” — in other words, problems for doctors to fix. In 2000, the American Academy of Pediatrics went so far as to declare the birth of an intersex child a “social emergency.” (Since then, the AAP has grown more circumspect. “DSD may carry a stigma,” states a position paper adopted in 2006.)
But now activists are turning that argument around... Read more via Washington Post
Head to the Washington Post to read this full, in-depth profile of intersex people and the difficult challenges and choices families face. Along with the question of self-determination and when or if youth should have surgeries to modify their bodies, author Nora Caplan-Bricker examines the association of 'intersex' with the SOGI (sexual orientation and gender identity movement). An excerpt below:
Initially, the members all had AIS, and the group was exclusively for women, which is how the majority of people with AIS identify. But in the past several years, membership has opened — first to any women with intersex traits and their families, and then to intersex men and nonbinary people, after decades of debating whether any association with nonbinary, transgender or other queer movements could be strategically harmful to the cause. Viloria — who identifies as nonbinary and uses the pronouns s/he and he/r — writes about the discrimination s/he faced from other intersex people in the ’90s; some said Viloria wasn’t a good spokesperson for the movement. When some gay rights advocates added an “I” for intersex to their expanding abbreviation in the early 2000s, “I remember that freaked out some people,” says support group president Saviano, who is a lesbian. “It’s a tough one. You don’t associate any kind of sexuality with a newborn, and it scares people when ‘intersex’ has a connotation of sexuality.”
But activists increasingly feel that, as Zieselman put it, “the pros outweigh the challenges” of associating intersex rights with other gender-justice movements. For one thing, the heteronormativity that oppresses gays and lesbians also drives nonconsensual intersex surgeries, which reflect the assumption that little girls, for example, will grow up to be straight women — and that a woman’s sexuality is defined by her vagina, while having a working clitoris is secondary or optional.
Yet while advocates increasingly see their issue through an LGBT lens, many parents — including liberals who told me they would be happy if their child grew up to be gay or transgender — say this unfairly foists an identity on their kids. Some of the parents I interviewed argued that surgery was the best way to leave the future open. “It’s something that, as a parent, you have to kind of war with and say, ‘Do I leave my child with the burden of being different when it can be adjusted to be less different?’ ” one father of a teenager with CAH told me.