When Hanne Gaby Odiele was two weeks old, she developed an infection. Her parents took her to the hospital near their native Kortrijk, Belgium; the doctors did some blood work—and then they informed Franke and Annie Termote that their little boy was going to be just fine.
Boy? They were flabbergasted. The blood tests revealed that their child had a condition known as androgen insensitivity syndrome (AIS)—while she was genetically male, with one X and one Y chromosome, she was resistant to male hormones, or androgens. Hanne was born with internal testes, and without a uterus or ovaries.
The Termotes’ family doctor had never seen anything like this. The couple was referred to a specialist, who offered the same information Hanne’s parents would hear ad nauseam as their daughter grew up—their child was intersex; she would need corrective surgeries; and it was paramount to keep it all a dark secret, even from Hanne herself.
Odiele is now 28 years old, a model who has walked runways from Chanel to Givenchy to Prada and starred in campaigns for clients including Mulberry and Balenciaga. She is telling me all this over an early-afternoon glass of champagne in a Nolita restaurant where the bubble gum–pink decor matches her fuzzy Acne Studios sweater. The color scheme is an unwitting commentary on the “pink is for girls” stereotype—a funny backdrop, she says, laughing, for the subject at hand.
In the new landscape of sex and gender—in a world where trans and gay rights have made incredible strides—intersex is perhaps the last taboo. Odiele’s decision to go public, to fully disclose the details of the body she was born with, and to become a spokesperson and advocate for the intersex community, is an act of enormous courage. Though she acknowledges being inspired by Hari Nef and Andreja Pejic, trans models who have walked major catwalks, Odiele is exploring uncharted territory—it is impossible to identify even one well-known person in any field who is openly intersex.
Intersex is actually an umbrella term referring to more than 30 different conditions in which a person is born with a variation in sex anatomy. For decades, the overwhelming majority of physicians responded to intersex babies by rushing them into surgery. Ilene Wong, M.D., a urologist who has treated intersex adults, says that as of the last several years “the whole landscape is finally changing as people are becoming more aware of the consequences. Some things don’t need to be fixed! There are times when there is medical necessity, but almost all of the surgeries are purely cosmetic—and can leave people scarred, unable to have intercourse, and possibly experiencing early menopause.”
Kimberly Zieselman, the executive director of InterACT, an organization with which Odiele is working closely that advocates for the rights of intersex youth, shares an astonishing statistic: “Nearly 2 percent of babies are born intersex—about the same as naturally born redheads.” How many of them have lived their lives shrouded in shame and secrecy?
Many of Odiele’s school holidays were spent in doctors’ offices, with medical students often viewing her without her consent. “Why are all these people looking at me when I’m fully naked?” she wondered. Her parents were told that if she didn’t have her testes removed when she was ten or eleven, she would develop cancer (a common practice, Odiele tells me now—a response to our society’s fear of nonbinary bodies; in some cases intersex children are no more likely to develop gonadal cancer than anyone else). Instead of explaining to their daughter what the surgery actually was for, they were instructed to tell her simply that she had a bladder problem. “They told us what Hanne had was extremely rare,” her father, Franke, explains. “Now we know so much more. We also thought we could never share this with friends or family.” In those days before the Internet, if you were in a little town in Belgium, you also had virtually no access to the kind of information now at our literal fingertips. “We felt very alone,” her mother, Annie, says.
If Odiele’s parents didn’t disclose the whole story to their child, it was because they didn’t know the complete truth either. In fact, it was Hanne herself who finally cracked the case. She was seventeen, feeling like “a sad mess—the hormones they gave me were fucking up my body. I knew something was wrong.”
A few months before she was discovered by a modeling agent at a rock festival in her hometown, she was leafing through a Dutch teen magazine when she came across a story about a girl who couldn’t have babies—and who had had many surgeries. This is me! Odiele remembers thinking. “I contacted the magazine, got in touch with that intersex girl, and then found a self-help group in Holland. It was the most amazing thing. You think you are alone—there is no one like you—and then you get to talk to other intersex people!” Her parents now urge other parents of intersex children to be open and transparent. “Please talk about it!” Annie says. “Talk about it with your daughter, with the siblings, your family, friends. Find a medical team that informs you all the way and that is assisting you medically and mentally through the whole process. Talk with people from the intersex community!”
“Doctors think they have to ‘normalize’ the baby,” says Odiele, who is dedicated to stopping what she calls “crazy surgeries that are irreversible and nonconsensual, done when you are much too young.”
The United Nations agrees with her—in March 2016 they condemned nonconsensual genital surgeries on intersex children, urging that they be classified as torture.
Odiele is just now coming to terms with her own medical history, having recently received her childhood records from Belgium, and is beginning to understand the extent of those early surgeries. She has been on hormone-replacement therapy—low-level birth control pills—since she was ten.
“It’s like being in menopause from a young age,” she says. “For somebody who cannot have a baby, it’s kind of ironic. I still developed breasts normally, but very late—everything was a little delayed on me.”
In the beginning, Odiele told very few people. Alexander Wang, who cast her in his very first presentation (he and Odiele “grew up in the industry together,” he says), recalls that she told him about herself on the way to a party—they both love a good time—about five years ago. “She doesn’t let these things daunt her or affect her thinking or hold her back,” he says.
She also has no problem answering questions that might seem deeply intrusive in another setting. “It takes a lot to embarrass Hanne,” her husband of six months, the model-DJ John Swiatek, says. (They were married in a bucolic hipster affair in the Catskills last summer, with Odiele wearing a custom white Riding Hood–goth ensemble by Wang.) When she first told Swiatek about herself, seven or eight years ago, he countered with “Oh, that’s cool—I’m adopted.”
Odiele, exhibiting her trademark candor, says without prompting: “Our sex life is very normal—hetero-normal.”
Still, she doesn’t gloss over what makes her different—or, her word, “special.” “I will never know how it is to have a period, have a baby. But I also don’t stand up peeing! I don’t have a penis! I am intersex, but I am much more female. I am not facing a biological clock—I have no clock!” If she is nervous about her coming out, she is also almost gleeful with anticipation. “It was important for me to make this declaration now, based on where I am in my life. I want to live authentically as who I am and help to break down the stigma that intersex persons face—but also to use the profile that I’ve built through modeling to give back to those without a voice. I want to be there for people who are struggling, to tell them it’s OK—it’s one part of you, but it’s not who you are.”
A few days after our champagne cocktail, I meet Odiele and her husband at Battle Hymn, Ladyfag’s Sunday dance party in Chelsea. It’s after midnight, and the wildly eclectic crowd gyrating under the colored lights includes the kind of outré club kids not seen since the nineties, floating in a vast sea of more conventionally dressed gay men and the occasional fashion luminary. The photographers Mert Alas and Marcus Piggott are chatting with Odiele on a stage that doubles as a DJ booth and VIP room.
Ladyfag, a New York nightlife impresario whose very name bespeaks a postmodern take on gender fluidity, has known Odiele’s secret since a night in Paris during Fashion Week several years ago, when they sat together on a bench in the basement of Chez Castel. “She just blurted it out,” Ladyfag says. “I knew it was a big deal, but she said it so casually.”
Tonight, Lady is wearing a pair of towering silver Charlotte Olympia pumps, some kind of minuscule girdle-and-bra dress, and an enormous fright wig; Odiele is clad in pale ripped jeans and a Berlin T-shirt. It is hard to believe that her revelation would shock anyone in this crowd, where the victories for personal liberation, the fight to live and be fully accepted for who you are, are lustily celebrated on the dance floor.
Looking out over the revelers, many of whose own lives were considered shameful and perverted only a few short decades ago, I am reminded of something Odiele said in that Pepto-Bismol-pink bistro. “Being a model is like a big compliment, but it can be so one-sided. I knew I wanted to use it at some point as a platform to give back, to do something, to tell people: You can be accepted however you happen to be! The ‘norm’ is not what you think it is.”