What Does It Mean to Be Intersex?

Yesterday, supermodel Hanne Gaby Odiele opened up about being intersex, making her one of the first high-profile figures to do so. What exactly does it mean to be “intersex”? Broadly, it’s a person who is “born with a reproductive or sexual anatomy that doesn’t fit the typical definitions of male or female,” according to The Intersex Society of North America (ISNA). But being intersex is way more of a spectrum than a clear-cut classification, and people like Odiele are trying to change that misconception. An intersex person can be born with genitals that seem in-between (like a noticeably large clitoris, missing vaginal opening, a very small penis, or a scrotum that’s divided like labia), or appear to be female on the outside with mostly male anatomy and vice-versa, according to the ISNA website. There’s also a category of intersex people who are born with “mosaic” genetics, meaning some of their cells have XY chromosomes and others are XX chromosomes. "There's a lot of variation across genitalia, regardless of intersex status," says Georgiann Davis, Assistant Professor of Sociology at the University of Nevada, Las Vegas, and the current President of interACT: Advocates for Intersex Youth. "For example, penises aren’t all the same size, and vaginas don’t all look the same. Intersex is just another piece of the puzzle in this natural variation." An estimated 0.05% and 1.7% of the population is born with intersex traits, according to the United Nations, which might not sound like a lot, but the high end of that percentage is about the same as the population of redheads. "Many people have never heard of intersex, but I'm confident every single person in the world has interacted with someone who is intersex," Davis says. While people are undoubtedly born intersex, depending on their intersex trait, some people won’t be able to tell until they reach puberty and menstruation doesn't happen — which is another reason it's hard to pinpoint the population of intersex people. "Although some intersex people identify as non-binary, gender queer, or something else altogether, many intersex people live their lives as women or men," Davis says. It's important to note that intersex is not the same as transgender, even though trans people face some of the same struggles as intersex people due to narrow societal understandings of sex and gender, she adds. In Odiele's case, she was born with an intersex trait called Androgen Insensitivity Syndrome (AIS), meaning she had XY chromosomes typically found in men. She had undescended testes at birth, but her parents were told that if she didn’t have them removed, she could develop cancer, so she had them removed when she was just 10. When she turned 18, she had more vaginal reconstructive surgery, and called the procedures "distressing" and "traumatic." "It's not that big of a deal being intersex," Odiele told USA Today. "If [the doctors] were just honest from the beginning... It became a trauma because of what they did." Unfortunately, these corrective or so-called "normalization" surgeries are very common with intersex children, and they happen when they're too young to comprehend or consent. There can be serious side effects (besides the trauma of surgery without consent), like permanent infertility, pain, incontinence, loss of sexual sensation, and depression, according to the UN. "These surgeries are genital mutilation and are irreversible," Davis says. "The only person who should be able to consent to medically unnecessary surgeries is the person whose body is being permanently altered." Now that Odiele has spoken out about her experience, hopefully more people will talk openly about this. She says being intersex has been crucial for her career in fashion, because she felt like she didn't have to fit into a certain role. "I was able to kind of have a sense of being more of an individual," she told USA Today. Odiele plans to become a passionate advocate for intersex youth and says, "It's an important part of my life to talk about this."