Susan Miller

USA TODAY

Hanne Gaby Odiele is a fearless fashion star known for putting herself out there in a bold and striking take on street style.

Now, the veteran of the runway and city sidewalks is revealing a more intimate piece of herself: Odiele is intersex.

“It is very important to me in my life right now to break the taboo,” says the 29-year-old supermodel from Kortrijk, Belgium, in an exclusive interview with USA TODAY.

“At this point, in this day and age, it should be perfectly all right to talk about this,” says Odiele, one of the first high-profile people to disclose her intersex status and share her story.

Intersex individuals are born with sex characteristics such as genitals or chromosomes that do not fit the typical definitions of male or female. Up to 1.7% of the population is born with intersex traits, according to the United Nations — a figure roughly equivalent to the number of redheads.

Beyond giving a voice to people who are often in the shadows, Odiele is making this disclosure to spotlight medical procedures intersex children undergo without their consent in a misguided effort to make a child appear more typically male or female. “I am proud to be intersex,” she says, “but very angry that these surgeries are still happening.”

More coverage:What it means to be intersex and how common is it?

Odiele was one of those children. She was born with an intersex trait known as Androgen Insensitivity Syndrome (AIS) in which a woman has XY chromosomes more typically found in men. She also had internal, undescended testes, and her parents were told that if she did not have her testicles removed, “I might develop cancer and I would not develop as a normal, female girl,” she says.

At 10, she had surgery to remove her testes, an experience she could barely process at the time. “I knew at one point after the surgery I could not have kids, I was not having my period. I knew something was wrong with me.”

At 18, Odiele — whose modeling career took root when she was discovered a year earlier at a music festival in Belgium — underwent an equally distressing procedure in the form of vaginal reconstructive surgery.

“It’s not that big of a deal being intersex,” she says. But the anguish of the two surgeries is an issue for her that is still troubling today. “If they were just honest from the beginning... It became a trauma because of what they did.”

AWARENESS AND OUTRAGE

Kimberly Zieselman, executive director of interACT Advocates for Intersex Youth, says Odiele will be a powerful champion for the intersex community and will help thrust medical procedures that try to “fix” intersex kids into the harsh focus they deserve.

Zieselman says Odiele will partner with her advocacy group. “I think her speaking out, having her voice added to the mix is going to culturally raise awareness in the mainstream,” she says, noting that groups such as the U.N. and the World Health Organization already condemn these surgeries as human rights violations. It will “help in raising awareness – and raising outrage.”

Trans girl, 9, makes history on National Geographic cover

Zieselman, now 50, had an experience as searing as Odiele’s. At 15, a reproductive oncologist at Massachusetts General Hospital told her parents she had a partially formed uterus and ovaries that needed to be removed so they would not become cancerous. Her parents consented.

When the married mother of adopted twin girls was 40 and struggling with a hernia problem, she obtained her medical records. Zieselman was stunned to find the surgery she had as a teen removed internal, undescended testes. Zieselman never had a uterus, ovaries — or cancer; she was intersex.

“My story quite frankly is not unique,” says Zieselman, whose group’s No. 1 priority is ending irreversible procedures. “Hundreds of women have a similar story. Hiding the truth conjures up feeling like a freak.”

A fear of non-binary bodies — not a pressing medical need — is often what drives surgical interventions on intersex children, says Sue Stred, a professor of pediatrics at SUNY Upstate Medical University. When a newborn’s genitals do not appear “typical,” parents can be compelled to have their child undergo cosmetic surgery to appear more ordinary.

As for concerns about cancer, Stred says there is not “good, long-term data” on whether someone with a condition such as AIS may develop cancer if testicles are not removed. “The possible percentage chance of cancer is vastly overwrought,” says Stred, who specializes in pediatric endocrinology.

LIFELONG REPERCUSSIONS

The consequence of removing gonads is a lifelong dependence on hormone replacement medications, Stred says, and permanent infertility. Other physical issues are reduced sexual sensations, urinary tract infections and incontinence.

The psychological repercussions of these medical procedures can also be devastating, Stred says. “There is a sense of betrayal when teens or young adults find out. Some individuals leave medical care altogether because they are so angry at what physicians did to them before they were the age of consent.”

And there is tremendous resentment of parents, she says. Kids think “something was done to me; you felt I wasn’t perfect; I had to be fixed.”

Awareness of intersex issues is slowly evolving, says Zieselman, who notes that many people don't even know what intersex means. Being intersex relates to biological sex characteristics. It is not the same as transgender: someone whose gender identity — how they feel inside — does not correspond with their birth sex. An intersex individual can be straight, gay, lesbian, bisexual.

“It’s amazing to me just in the last two years to see the difference in how many intersex young people are willing and comfortable to speak out at earlier ages. It is largely thanks to the LGBT movement ahead of us,” Zieselman says.

It is that group that may also carve a path on the issue of unneeded surgeries, she says. The transgender community “is doing it right,” she says. “No surgical treatment until (individuals) have psychological support. That’s a model we can use.”

Above all, Stred says there should be no surgery until an intersex child is at an age of consent and can weigh the benefits and risks. “You wouldn’t do a nose job on a 7-year-old,” she says.

A PASSIONATE VOICE

When Odiele’s career was at the starting gate in 2006, she was slammed by a car that ran a red light on the streets of New York, leaving her with two broken legs and multiple fractures. After several surgeries and physical therapy, she was back on the catwalk — just 10 months later.

She says the experience grounded her in her career choice and “gave me something to fight for.”

Now she is hoping to take that fighting spirit to the next level by being a passionate advocate for intersex youth. “It is an important part of my life to talk about this,” says Odiele, whose story will also appear in the issue of Vogue magazine that hits newsstands Wednesday.

Odiele has been more open about her status in the past year with close friends and trusted associates — particularly during chats about periods or having babies — but this is her first public announcement. She says she doesn't fear any backlash from colleagues in the fashion industry. "They will see me as they have before," she says. "Nothing should change."

Today Odiele loves to lounge in her husband’s clothes as her “go-to day to day” just as much as getting “glammed up.” She says being intersex has given her a forward-thinking perspective on fashion. “I didn’t have to fit into certain roles,” she says. “I was able to kind of have a sense of being more of an individual.”

Her husband, model John Swiatek, says he is “incredibly proud and happy” his wife is speaking out. “I am very impressed with her decision to advocate for intersex children in order to give them an opportunity to make up their own minds about their bodies, unlike the lack of options and information Hanne and her family (and many others) were given,” he says.

Last summer, the fashion star who has been in front of cameras for the industry’s A-list photographers and poses for brands from Dior to Alexander Wang, married Swiatek in an outdoor bash infused with countryside cool in upstate New York.

She wore a hooded cape draping a sheer lace dress, with cargo pants and a bra top peeking through. Bridesmaids strolled barefoot through fields in shimmering lavender slip dresses.

It was trademark Odiele.

Odiele, who calls her innovative style “just being myself; no rules,” has the same message for intersex youth today: “You can be whoever you want. It doesn’t matter.”

Follow Miller on Twitter @susmiller