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.
▲ Marissa Adams, 25, pictured above
“I wasn’t used to talking about it, to being out about it. ... And I was afraid that no one else’s story would be like mine.”
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.)
▲ Hann Lindahl, 25
“You have to create the content in the media you want to see in the world, and I don't see a lot of intersex stories being told. I would like to write intersex comics. Somebody's got to do it.”
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. “There is a much bigger focus now on intersex identity politics — on letting the world know that we are intersex people, as opposed to people with medical conditions,” says longtime activist Hida Viloria, a chair of the Organization Intersex International and author of a new memoir, “Born Both.” To Viloria, surgeries that aim to make children more conventionally male or female are “a gendercide, an institutional effort to erase us from society.”
There have been, in recent years, signs that the activists are making progress. In 2011, the United Nations’ Committee Against Torture released a statement critical of nonconsensual intersex surgeries; two years later, the panel went further, declaring that the surgeries often “arguably meet the criteria for torture.”
Even in the past few months, there has been growing momentum for intersex rights — on both the cultural and political fronts. 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. And 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.”
These developments are in step with the larger disability rights movement, which argues for replacing assumptions of “bad-difference” with acceptance of “mere-difference,” in the terminology of philosopher Elizabeth Barnes. And they likewise echo the gay and transgender rights movements, which have risen to the surface of American politics and culture over the past generation. 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?
▲ Arti Tripathi, 19
“With politics now, every time I go into a bathroom I think, ‘Okay, I present feminine, I have a typically female body … but my chromosomes are XY and the written laws say XY can’t be in this space.’ I feel very aware of it.”
NEW PARENTS “HAVE THIS GRAND IDEA OF WHAT YOUR HOSPITAL STAY IS GOING TO BE LIKE,” one mother whose child was born with atypical genitalia told me. “Everyone’s going to come visit, and you’re going to have balloons, and they’re going to be pink or blue — or yellow or green if you don’t want to be gender normative. For us, all of that got shut down.”
After Adams was born, her parents had to wait for test results that would help determine her gender. Ultimately, she was diagnosed with androgen insensitivity syndrome, in which people with XY chromosomes and internally “male” reproductive systems — including undescended testes — are wholly or partially immune to androgen hormones, such as testosterone, that their bodies produce. People with complete AIS are born looking like typical girls. Adams’s insensitivity is partial; in cases like hers, children are often born with an enlarged clitoris that may look like a small penis, and sometimes with a single “urogenital” opening instead of separate openings for the vagina and urethra. (Some doctors argue that this single opening increases a person’s risk of urinary tract infection, though research remains inconclusive.)
Within days of her birth, Adams had surgery to remove her internal testes. (These can carry a heightened risk of cancer, though the danger varies among intersex conditions. In cases where the cancer risk is low, advocates — and, increasingly, some doctors — argue for waiting and close monitoring.) But the surgery Adams regrets occurred at 18 months, when doctors constructed a vagina using tissue from her bowel. The result, she says, doesn’t look typical, in part because the operation left scars; more important, in her view, was that she didn’t get to make the choice herself.
In those uncertain early months, Adams’s parents made a decision that would define their daughter’s life: to keep her intersex traits a secret, even from family and friends, and raise her as the ordinary girl they felt her to be. But Adams slowly grew troubled by a deepening sense of difference. Her parents stressed that she was normal, “but I didn’t know what that meant,” she recalls. When she was 10 or so, her mother explained that she wouldn’t get a period or be able to get pregnant. “I think then I started developing some sort of identity crisis,” she says, “because I knew girls were supposed to have kids, so if I couldn’t have a kid, was I not normal?”
There was also the issue of her doctor’s appointments, which increased as adolescence approached. Adams remembers one visit, when she was about 10, where she refused to let a urologist examine her genitals; when her parents tried to coax her, she walked down the hall and sat by the elevators, blood pounding with confusion, rage and fear. Nurses and child therapists descended quickly, cajoling her to take some deep breaths, take some medicine — a sedative — and let the doctor have a quick look. Adams just kept saying no, no, no. Eventually, her parents took her home.
A couple of years after that failed exam, Adams started limiting what she allowed herself to eat. What began, at least consciously, as an effort to get lighter for soccer and basketball quickly spiraled into life-threatening malnourishment. Adams recalls that she was being treated in an eating disorder unit, at age 14, when she finally learned the whole truth about her intersex body from a psychiatrist who thought the information might help. At first, it did the opposite. “I hated everything about it,” she told me. “It fueled my anger toward myself, my eating disorder and my depression.”
Years later, Adams is scrupulous when she tells the story of her eating disorder, careful not to reduce her life to a domino effect. She’s pretty sure she would have struggled with her mental health regardless of the fact that she is intersex. Still, she has started to wonder if there might be a deeper link between the pain and humiliation that hovered around her body in childhood and the desire that came later to make it disappear. As she told me, “I did have one therapist say, ‘No wonder by the age of 12 you started starving yourself. That’s the one thing you could control.’ ”
▲ Jonathan Leggette, 21
“When I found InterACT, I saw the lack of diversity in the intersex community. ... It affects people not to see people like them in the communities they belong in. That’s something I pride myself on doing.”
THE DOCTORS WHO TOOK CARE OF ADAMS WERE MORE OR LESS FOLLOWING A PROTOCOL invented in the 1950s and ’60s by a Johns Hopkins psychologist named John Money. 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.
This is how today’s leading intersex activists see the Reimer case, and the issue of early surgery in general. “We’re not anti-doctor, we’re not anti-medical intervention, and we’re not anti-surgery if it’s consented to,” says Kimberly Zieselman, the executive director of InterACT. Like virtually all the other advocates I interviewed, Zieselman supports assigning a gender at birth. “I don’t think it’s a child’s responsibility to change society’s notion of gender,” 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. “You raise your kid in a gender — even if you don’t know for sure, you make a decision based on the condition you have.”
Advocates struggle against the misconception that refusing surgery means raising intersex children as a “third gender.” Though some intersex people grow up to feel that neither gender fully fits, the vast majority identify as men or women and feel stable in those roles. What advocates reject is the idea that sex organs must be non-consensually changed in childhood to fit a presumed gender identity — or that anyone, at any point in their lives, should be embarrassed to be, say, a woman with genitalia that isn’t typically female.
Zieselman advocates 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. But among doctors, parents and advocates, there remains substantial disagreement over what constitutes necessity. When I interviewed Michael DiSandro, a pediatric urologist and head of the DSD clinic at the University of California at San Francisco, he brought up the example of a boy with an opening near the base of his penis who would have to sit down to pee: In these cases, known as hypospadias, most urologists would recommend surgery to move the opening in early childhood, an operation that can cause severe complications and, according to activists, should be done only with the patient’s consent. “Advocates will say, ‘So what, he goes through life sitting down to void,’ but that might change his life, make him feel different,” DiSandro says. “Is standing up and voiding a medical necessity? I don’t know the answer to that.”
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.”
▲ Emily Brehob, 24
“Recently someone said to me, ‘Do you see yourself as intersex? I knew about your condition, but I always thought you saw yourself as normal.’ I thought that was a big misunderstanding, because to me being intersex is not at all at odds with being normal.”
The medical establishment contends that the advocates are a disgruntled minority and that most recipients of early surgery are satisfied with the choices made on their behalf. “People that had the surgery who end up happy or feel typical, they’re not going to join an advocacy group and promote doing surgery,” DiSandro says. The advocates and their supporters, on the other hand, are skeptical that the “silent majority” is out there. “That is the folk idea that will not die,” Karkazis told me.
This leaves advocates and doctors fighting over what to do in the absence of conclusive scientific research. “Families come to us with histories, cultural and religious, and ultimately I think it would be hubris to insist that we know what would be in the best interest of the child and the parents don’t,” says David Sandberg, a psychologist at the University of Michigan who specializes in intersex issues. “We don’t have the evidence to say to the family, ‘You should wait until your son or daughter can decide on their own.’ We don’t know. What is missing from this discussion is a group that has not undergone surgery and that has been studied.”
“That’s the opposite of the scientific method,” argues intersex advocate Tiger Devore, who is also a psychologist. In other areas of medicine, “we don’t do treatments if we can’t prove the efficacy. … There’s the issue of ‘Do no harm.’ ” Human Rights Watch researchers told me they identified two medical centers that tell parents the surgeries have been called a human rights violation — but even those centers continue to perform the surgeries if parents choose.
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.”
Even setting aside the most dramatic cases, many children who have early surgery will need more operations later, leading to additional nerve damage and scarring in one of the body’s most sensitive places. These follow-up operations can foster “a medicalized experience of one’s own genitalia,” says Lih-Mei Liao, a psychologist who specializes in intersex patients. “Especially if there are complications, people can have difficulty thinking about their genitalia as a body part they can enjoy, that really belongs to them.”
The struggle between activists and the medical establishment shows no signs of abating. In 2011, a number of activists were invited to serve as advisers for a National Institutes of Health-funded research network on intersex medical care — but feelings toward the project quickly soured. The advocates resigned en masse in 2015. Medical historian Alice Dreger spoke for many when she wrote at the time, “I am fed up with being asked to be a sort of absolving priest of the medical establishment in intersex care.”
One surgeon, who spoke on the condition of anonymity so as not to convey any bias to patients, told me, “I think the fight is getting worse, and I don’t know why they’re turning it back into a fight.” Increasingly, advocates have argued that there can be no compromise with what Dreger (borrowing from ethicist George Annas’s work on conjoined twins) termed the “monster ethics” of intersex surgery: the idea that the ordinary rules of morality don’t apply to these children, and that nearly anything can be justified to make them “normal,” acceptable and, therefore, fully human.
▲ Christa Whitlow, 30
“When I first found out about my condition, I felt a little hurt, like my parents hadn’t advocated for me. … When I realized it was out of a fear of my life not being easy, or as perfect as they wanted it to be, I couldn’t help but see an overwhelming amount of love. It’s made me love my parents even more, if that’s possible.”
TO BETTER UNDERSTAND THE PRO-SURGERY POINT OF VIEW, I asked the CARES Foundation to connect me with CAH patients who wanted to defend the surgery they’d had as babies. I was able to interview two young adult women, as well as a number of parents; my sample size was of course unscientific, but these stories serve as a reminder that views of surgery are as varied as the ways people relate to their bodies and define their identities.
The first woman I interviewed was Julia Anthony, a 26-year-old graduate student in industrial design with salt-wasting CAH, a potentially life-threatening condition in which underperforming adrenal glands cause the body to lose too much sodium. If Anthony doesn’t take her medication and monitor her body carefully, she can go into shock. She argues that the controversy over surgery fixates attention on what she considers a secondary part of her condition. “Living is the primary focus for me,” she said.
Anthony was born with a single urogenital opening, and when doctors told her parents that she would need surgery before she could menstruate normally or have the option to get pregnant, they decided it made sense to do the procedure in infancy. Surgeons also reduced the size of her clitoris. “If my parents were told I couldn’t have the surgery done, then I’d be in a heap of trouble right now as a young woman,” Anthony said. “To have told my teachers and classmates, ‘No, I’m not getting my wisdom teeth out, I’m going to the doctor to get all this other stuff done,’ would have been awkward. Maybe I would have said, ‘I can’t deal with missing school, with people knowing this about me.’ ” As it is, she’s engaged to a woman and excited to have children in the coming years.
Anthony didn’t need follow-up surgeries, and she’s glad her parents made the choices they did. When I stumblingly asked her how she’d rate her results functionally as well as cosmetically, she laughed: “I enjoy being with my partner, if that’s what you mean.”
Sexual pleasure has been elusive for the other woman I interviewed, 25, an aspiring artist who lives with her parents in Pennsylvania, and who asked to be identified by her first name, Lauren. A surgery in infancy necessitated a second operation when Lauren was in third grade, and though she emphasized that both surgeons “did an awesome job,” she has considerable scarring and a very small opening. Not unlike Marissa Adams, she has spent the past two years searching for a surgeon to do a third procedure.
She couldn’t suppress her tears when she told me that, through CARES, she has found a doctor who says he can open up her vagina. “He could sit there and say to me, ‘I’m going to give you what you want — I’m going to give you normalcy,’ ” she said. “Any girl walking down the street can say, ‘I can have sex whenever I want,’ but I can’t, because there’s no opening. It’s kind of like I’m on a level playing field after this surgery. That’s what I want, and that’s what he wants to give me, too.”
Despite the pain, Lauren said she thinks her parents made the right decisions on her behalf. As a kid, she felt normal. She changed in front of the other girls before gym class. “I didn’t think, ‘Do I have to sit to pee or stand?’ I didn’t go, ‘Do I have this or that?’ I wasn’t confused,” she told me. Gender is one of our most defining categories, and Lauren seems to draw comfort from the ways the surgery helped her fit inside the lines. “I’m a woman,” she said. “I get my period. I love chocolate. That’s me.”
▲ Anastasia Van Buskirk, 25
“In ninth or 10th grade, we were learning about — I don’t think they used the word ‘intersex’ — but intersex conditions, and I was reading the descriptions, trying to figure out which one I was. I went to my teacher and said, ‘I think I’m one of these,’ and my teacher basically said, ‘If you are, you shouldn’t tell anyone.’”
THE LIVES OF INTERSEX PEOPLE TRANSFORMED TWICE IN THE 20TH CENTURY because of new technologies: first, the advent of genital surgery, and second, the invention of the Internet. In early chat rooms of the 1990s, people who had been told they were one-of-a-kind aberrations began to find others with near-identical stories, and people who had been lied to by doctors and parents found the means to assemble the clues.
Marissa Adams, too, searched for information about AIS online as she tried to make sense of her diagnosis. Eventually, she connected with Arlene Baratz’s daughter, Katie Baratz Dalke, who had gone on “The Oprah Winfrey Show” to talk about being intersex. Baratz Dalke encouraged her to attend the AIS-DSD Support Group’s annual meeting, but Adams was torn. “I wasn’t used to talking about it, to being out about it,” she says. “And I was afraid that no one else’s story would be like mine.” Her parents bought her a plane ticket to San Francisco for the 2014 conference, but at the last minute, swamped by anxiety, she decided not to go.
Adams wasn’t doing much better when the 2015 conference rolled around in Cincinnati. She had recently moved back in with her parents after an attempt to live alone deepened her depression, and she couldn’t imagine a future that didn’t look like her present: isolated, dependent, in and out of the hospital. Somehow, she managed to talk herself into giving the conference a try.
Many of the people who met Adams there two years ago sound protective, almost tender, when they recall how frail she appeared. “You seemed so quiet and nervous, almost like a baby bird,” Baratz Dalke told her at this year’s conference in Phoenix, when the three of us spoke over Diet Cokes in the hotel’s frigidly air-conditioned restaurant. Baratz Dalke is in her 30s now, a psychiatrist in Pennsylvania and a new mom; she and her husband had their daughter with the help of an egg donor and a gestational surrogate. Adams calls her “my role model.”
Usually, Adams’s smile is a brief event, lifting her whole face for an instant before her normally pensive expression returns. But she beamed describing that weekend in 2015. “I left the first conference a different person than I was going in,” she told me and Baratz Dalke. For Adams, the most important part of the conference was meeting successful people who happened to be intersex, and realizing that she could be one, too: “Instead of dwelling over my past, I was like, ‘You could be a professional. You could be a therapist, you could be a nurse, or something, and help other people rather than be the one who’s the victim of life.’ ”
She also met people who talked about their bodies in ways that had never occurred to her, as all the more beautiful for being nonbinary. “For so long, I’d been telling myself, ‘This is contributing to my depression,’ ” she said in Phoenix. “Then I saw people celebrating everything about being intersex, and I thought, ‘I could be one of those people who’s celebrating it, rather than hating myself over it.’ ”
▲ Emily Quinn, 28
“I think because I had gone for years not talking about being intersex, when I did start talking about it, there was always this voice in the back of my head, saying, ‘What are you doing? Stop, you can’t be talking about this, you’re not supposed to.’ Since I’ve been doing this work and, now, starting to feel more confident in it, it’s nice not to have that.”
This sense of pride is fairly new to the community at large. The support group formed in 1996, but until about four years ago, its meetings were a matter of the utmost secrecy. As Zieselman told me, “When we held the conference, we would tell the hotel staff that they weren’t allowed to reveal what it was for.”
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. “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.”
▲ Ellie Spencer, 15
“My family has been very cool. We don’t make a big deal about it, but we make it as big a deal as it needs to be — we don’t view it as a negative thing.”
THE AIS-DSD SUPPORT GROUP CONFERENCE IN PHOENIX this past July didn’t have the exuberance of a pride parade by any stretch — but nor did I notice the hush-hush, anxious atmosphere that so many described from previous years. When I arrived at the DoubleTree hotel near the airport, where about 200 people were gathering, I saw rainbow buttons on jackets and backpacks, and people catching up in the lobby wearing InterACT swag. In the coming days, I would spot a few T-shirts designed by the Chicago-based activist Pidgeon Pagonis, with the slogans “intersex is beautiful” and “too cute to be binary” in curling script.
Pagonis, 31, who identifies as nonbinary, was raised believing that they’d had early surgery for ovarian cancer, but put together the pieces of their intersex diagnosis at the age of 18 and got involved with InterACT’s youth group not long thereafter. “When I was a youth, there were only six of us, and everyone was using pseudonyms,” Pagonis told me. Up until a few years ago, “we never put pictures up, and we never did video.”
Maybe the best measure of how much has changed, then, was Zieselman’s enthusiasm when I asked if any InterACT members might agree to be photographed for this article. The group arrived at the conference from its own Phoenix retreat — held to coincide with the support group’s gathering — and Zieselman arranged a shoot in a vacant lecture hall from 8 to 10 p.m. In the end, it stretched until well after midnight, with a dozen members of the InterACT crew lining up for first and second chances to see themselves glow under professional lights. “Slay, slay, slay,” they chanted, as the next day rolled in, and one of their friends worked it for the camera in bright red lipstick and a purple InterACT T-shirt.
“Jaw line!” one woman called, in praise of a particularly devastating angle.
“You all have such great skin,” The Washington Post’s photographer marveled as he finally started to pack up his equipment.
“It’s because we don’t have any sensitivity to androgens,” the culprit behind acne, one member of the group explained. “We’re genetically engineered to be beautiful.”
Today’s InterACT youth are always talking about the importance of being out and proud — and the still-small number who weren’t operated on as children are especially conscious of constituting the control group that the medical establishment complains it lacks. “I like showing the doctors and other people who think I’m not okay unless I fit a binary, unless I’m quote-unquote fixed, that, actually, I am okay,” says InterACT youth coordinator Emily Quinn, 28. She found out she had AIS when she was 10 and first went looking for information online at age 12. “There was just nothing positive, at least that I could find. I knew then that my body couldn’t be this horrible thing that the rest of the world was making it out to be, and that one day I would want to tell people that I’m okay.”
▲ Koomah, 31
“I was involved in an LGBT youth group for several years and felt like I was the only intersex person on the face of the earth. There was a lot of isolation. I found out years later that the person who was sitting next to me every Friday night for years was also intersex.”
In Baltimore the day after the conference, the afternoon light is turning honey-colored by the time Adams gets out of her last doctor’s appointment. Today’s examinations didn’t yield any clear answers about surgery, and she looks tired as we get back in the car and drive to the strip of suburbia near her house.
Over dinner at an Indian restaurant, I stumble through a question that has been on my mind: Adams embraces being intersex as part of her identity, but she’s still choosing to be a DSD patient — is it ever hard to reconcile those things? “I do embrace it,” she says, “and it is a part of my identity, but it still feels like a disorder to me in a way.” She pauses as the waiter deposits our curries. She can imagine someone growing up thinking about being intersex as “a normal part of them, not a thing you had to fix,” she says, but that wasn’t her experience. “I think I feel that it’s a disorder because I was raised having my body corrected. At the conference, someone else said, ‘It is a disorder because it has caused so much disorder in my life,’ and I would agree with that.”
Adams lapses back into silence, and I sense that she’s struggling to be as optimistic as she’d like to be. “My parents weren’t trying to hurt me,” she says, fiddling with her fork. “I try to think of it that way. Even the doctors … they thought that maybe they were doing the right thing.” 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.
Two months later, Adams will tell me about her supportive new doctor, and about her plans to go ahead with the surgery. Already, she will seem to feel a bit closer to the future she is always imagining — the one where her body finally feels like her own. As she told me in one early conversation, “I have this vision of living happily ever after, even though I’m intersex. I have a feeling and a hope that it will happen, and it sort of keeps me going.”
Nora Caplan-Bricker is a writer in Boston. To comment on this story, email wpmagazine@.