“Hi, I’m Hanne,” she said cheerfully, only later admitting to being nervous. “And I’m excited to let the world know I’m intersex.”
On Monday — with the release of a series of those videos — Odiele became one of a few prominent figures to publicly reveal she was born intersex, an umbrella term that describes people with sex traits that are not clearly male or female.
Nearly 2 percent of the world’s population is born with intersex traits, according to InterACT Advocates for Intersex Youth, a nonprofit that seeks to raise awareness about the issue. The group notes that the statistic is roughly the same as the percentage of people born with red hair — and yet there remains a stigma when it comes to intersex people.
“Most people don’t know we exist,” Odiele, who made her announcement in conjunction with the group, said in one video. For more than a year, she had wrestled with how she might speak out about her own story: about the silence and confusion surrounding her medical treatments in childhood, the painful surgeries she underwent before she could truly consent.
“I’m speaking out because it’s time this mistreatment comes to an end,” Odiele added. “It caused me way too much pain.”
According to the Intersex Society of North America, intersex traits include reproductive or sexual anatomy that are not clearly typically male or female.
“For example, a person might be born appearing to be female on the outside, but having mostly male-typical anatomy on the inside,” the group notes on its page devoted to questions about what it means to be intersex. “Or a person may be born with genitals that seem to be in-between the usual male and female types — for example, a girl may be born with a noticeably large clitoris, or lacking a vaginal opening, or a boy may be born with a notably small penis, or with a scrotum that is divided so that it has formed more like labia.”
Intersex traits are not limited to anatomy, either: A person could also be born with “mosaic genetics,” with some cells having XX chromosomes and others XY, according to the group. While some people’s intersex traits are identified at birth, others only discover such characteristics later in life.
Odiele was born with Androgen Insensitivity Syndrome, or AIS, with XY chromosomes typically found in men. She was 10 years old when she underwent surgery in Belgium to remove undescended testes, she said.
At the time, awareness about intersex people was scant. Doctors told her parents she might get cancer if she didn’t undergo such surgery, so they agreed — but doctors never disclosed to Odiele why.
“No one ever told me about intersex,” Odiele told The Washington Post by phone Tuesday. “They told me I was abnormal, [that] I shouldn’t talk to anybody.”
When she was 18 years old, she had vaginal reconstructive surgery; to this day, she describes it as deeply traumatizing. It was around that time that Odiele typed in some of her “symptoms” online and found a Dutch teenage magazine profiling girls who had been born intersex.
“That’s how I found out,” Odiele said. “I told it to my doctor: ‘Is this me?’ He said, ‘Oh yeah, you finally found out.’ Then I met some people in the Dutch AIS community. … They were a huge inspiration at that point.”
Still, Odiele’s modeling career was just taking off. She would soon move to New York and immerse herself in her career, traveling the world for fashion shows and photo shoots. Because of that, for many years she said she “didn’t really pay too much attention to the whole intersex community.”
Last year, however, Odiele began revisiting support groups online.
“I started going on the forums again and reading stories again and remembering how traumatic it was for me,” Odiele said. Though she had become comfortable discussing being intersex with her husband, close friends and family members, she never forgot how isolated she had felt growing up — or how upset she felt about the “irreversible, unconsented and unnecessary” surgeries she underwent.
“These surgeries have caused way more harm than good,” she said in one of the videos taped last week. “I don’t want to have any other kid to suffer the way I did. It’s time to break the stigma.”
While there are growing efforts around the world to recognize intersex issues, they remain rarely discussed, said Kimberly Zieselman, executive director of InterACT.
In 2002, Jeffrey Eugenides published “Middlesex,” a sweeping novel about three generations of a Greek family centered on Cal, a main character who is intersex. The book won the 2003 Pulitzer Prize for fiction. Though some in the intersex community were critical of certain aspects of the book — as well as of book reviews that used the word “hermaphrodite,” considered a derogatory term — others praised it for shining a spotlight on intersex issues.
In 2015, Malta became the first country in the world to ban non-consensual medical procedures to modify sex anatomy. (In the United States, there are no laws specifically addressing intersex surgery.)
Last year, the United Nations’ Free & Equal campaign released a short video, “Perfect Just the Way They Are,” to raise intersex awareness.
“In many countries, intersex children are subjected to repeated surgery and treatment to try to change their sex characteristics and appearance, causing terrible physical, psychological and emotional pain — and violating their rights,” the United Nations campaign stated. Some of those effects include permanent infertility and lifelong pain, incontinence, loss of sexual sensation and mental suffering.
Despite these burgeoning efforts, Zieselman said there are still some parents who feel pressured to agree to surgeries for their child without the child’s consent. Often, a child undergoes multiple painful surgeries, she added.
“It comes from this need to ‘fix,’ I think, and this fear of non-binary bodies,” she said.
The group advises that parents of intersex children wait until they are old enough to decide what medical procedures they may want or need, if any.
“We’re not anti-surgery,” Zieselman said. “What we’re against is having those surgeries and harmful treatments imposed on unconsenting children.”
Zieselman said her own experiences — being born intersex and going through a non-consensual surgery when she was 15 years old — contributed to a sense of shame and motivated her to get involved in advocacy work, decades later.
“I was completely lied to about the nature of that surgery,” she said. “That just results in a lot of fear and kind of feeling like ‘God, you’re such a freak. It’s so bad that it had to be hidden from me.’ There’s that common theme in our community. Fortunately, that is starting to change.”
After her videos for InterACT were released Monday, Odiele said complete strangers began confiding to her through social media.
“Last night I went to my DMs, and they brought me to tears,” Odiele said. Some shared their own “very beautiful stories” of being born intersex, while others were parents who said they were raising gender non-binary children because of stories like Odiele’s.
One of her most cherished reactions, she said, was that of her mother, who called her after watching the videos. She told her daughter it felt like weights had been lifted from her own shoulders.
“I think she cried more than I did,” Odiele said. “She was very happy about it.”