On a Monday morning this past summer, Marissa Adams is talking about her plans for the future. They are bubbling out of her on a drive to Johns Hopkins’s Bayview Medical Center. 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. “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.
There’s a reason she is 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. When 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.”
Adams is intersex — meaning she was born with a 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.
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: Instead of talking about intersex people as medical subjects, they are speaking the language of identity, human rights and pride.
They want doctors, parents and society at large to take a less rigid approach to sexual identity — and especially to reconsider the assumption that, to identify as a man or a woman, a person needs the gonads, genitals and chromosomes to match.
Now, in an era when society has proved open to revisiting other identities that were once considered shameful or taboo, is the intersex community finally on the brink of its own revolutionary moment — one that could transform what was a disorder into just another way for a person to be?
- In January, a prominent Belgian model named Hanne Gaby Odiele came out as intersex.
- In March, Nevada legislators introduced a bill that would ban surgeries on children too young to understand or consent to them, which passed the state Senate but died in the Assembly. (Lawmakers in Texas and Indiana have also introduced similar bills in recent years, though neither received a hearing.)
- In June, three former U.S. surgeons general released a statement condemning the surgeries.
- In July, Human Rights Watch released a report in partnership with InterACT, urging “a moratorium on all surgical procedures that seek to alter the gonads, genitals, or internal sex organs of children with atypical sex characteristics too young to participate in the decision.”
In the 1950s and ’60s, a Johns Hopkins psychologist named John Money invented a protocol. Intersex people have always existed — the now-outdated term “hermaphrodite” was derived from a Greek myth — but surgery to “normalize” intersex bodies has been medically possible only since the mid-20th century.
Money had concluded from his research that gender role and identity were complex and, in large part, socially contingent rather than rigidly determined by biology. If nurture trumped nature, he reasoned, then parents of “hermaphrodite” children could instill a gender through proper rearing. Early surgery was key to Money’s model: Intersex genitalia, he argued, had the power to undercut the gender assignment, in both the child’s mind and the minds of the parents.
In the doctor’s most infamous case — which did not involve an intersex child, but altered the lives of countless intersex people — he instructed surgeons to create a vagina for an infant boy whose penis had been burned away in a botched circumcision in 1966. For decades, physicians referenced this anonymous case as proof of concept for early surgery — until a rival psychologist, tracking down Money’s patient in the 1990s, found that he had transitioned back to living as a male, under the name of David Reimer, in his mid-teens. A few years after his story became national news, Reimer shot himself in the face at the age of 38.
As the anthropologist and bioethicist Katrina Karkazis has written, horrified onlookers took the wrong message from Reimer’s tragic story, seeing it as proof that gender is innate.
Karkazis argues that Money was, in some ways, ahead of his time, and perhaps ours, in acknowledging that identity is not entirely fixed by biology. Seen that way, Money’s mistake was not his belief that someone born with male genitalia could end up identifying as a woman, or vice versa; rather, it was his attempt to determine the future for children who couldn’t yet know or express what they wanted.
- Some intersex people advocate holding off on surgery until informed consent becomes possible — usually in adolescence, though she argues for deciding on a case-by-case basis. Of course, if surgery is medically necessary, such as in the rare cases where an intersex baby is born with no opening through which to void urine and requires an emergency operation to survive, then no one could possibly object.
- Advocates argue that the stakes are too high to gamble on these irreversible procedures. Rates of gender dysphoria and transition are higher among certain intersex groups than in the general population, affecting as many as 1 in 20 girls with CAH, for example. “Some of these children are born with a fully formed penis,” says Arlene Baratz, a radiologist and member of InterACT’s board whose daughter has androgen insensitivity syndrome. In many cases, the phallus is cut down to a size that doctors and parents deem acceptable for a clitoris. That operation can permanently damage sensation — and, as Baratz points out, “if you grow up, and you feel like a boy, it’s a catastrophe that that was taken away from you.”
- Some doctors argue that early surgery yields better physical outcomes. Other arguments for surgery echo Money’s logic that early intervention can serve children psychologically. People who have surgery as infants “don’t have the memory of having to undergo a procedure, and they also don’t have the memory of ever not knowing where their genitalia fall,” says Karen Su, a pediatric endocrinologist at Weill Cornell Medicine and the medical director of the Congenital Adrenal Hyperplasia Research Education & Support (CARES) Foundation, an advocacy group for people with CAH that supports early surgery. “If you wait until they’re adolescents, they’ve gone through puberty, they’ve developed a social anxiety, they don’t want to go into the dressing room, maybe, or they don’t want to date anybody. They don’t want to wear a leotard or a bathing suit.”
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 Kimberly Saviano, president of the AIS-DSD Support Group, the largest organization of its kind in the country for intersex people and their families. Saviano is a lesbian.
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 parents interviewed argue 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. “To me, that kind of surgery, in its best case, allows the greatest amount of choice.” He has presented his daughter with the option to meet other kids with CAH, he says, but she hasn’t wanted to. “She doesn’t want to identify with CAH. She has CAH, but she’s not holding a banner out for it; she’s holding a banner out for other things.”
But for Marissa Adams, going to the AIS-DSD Support Group’s annual meeting has changed her outlook. She’s trying to embrace and celebrate her body.
Now, she’s trying to make the best of everything she has been through by insisting on openness: talking more with her parents; posting about the support group on Facebook; preparing to explain her past to a potential partner, whenever she finds her.
Later, she plans to go ahead with the surgery, and is imagining a future where her body finally feels like her own.