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Fashion model Hanne Gaby Odiele has spoken out to break the taboo around intersex experiences.
She wants to encourage conversations about intersex people in order discourage parents from putting children through potentially unnecessary surgeries meant to make a child appear more typically male or female.
“It is very important to me in my life right now to break the taboo,” the 29-year-old Belgian model told USA Today. “At this point in this day and age, it should be perfectly alright to talk about this.”
For starters, “intersex” is a “general term used used for a variety of conditions in which a person is born with a reproductive or sexual anatomy that doesn’t seem to fit the typical definitions of female or male,” says the Intersex Society of North America (ISNA). An intersex individual may be born with the physical features of a woman but the sexual anatomy of a man.
In Odiele’s case, she was born with Androgen Insensitivity Syndrome, meaning she has both XY chromosomes instead of solely female XX chromosomes. Because of her condition, she was born with a set of undescended testes, which were surgically removed at just 10 years old. According to her, the doctors told her parents that without the surgery, “I might develop cancer and I would not develop as a normal, female girl.”
The experience, however, became a traumatic memory, one that she could barely process at such a young age. “I am proud to be intersex,” she adds. “But very angry that these surgeries are still happening.”
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About 1.7 percent of the world’s population is born with intersex traits, according to the United Nations. But because this number is so low, society’s understanding of intersexuality is very limited. And unfortunately, anything that falls outside the traditional understanding of gender is often stigmatized. This then leads to feelings of shame and guilt, especially for parents of intersex children.
Thus, medical specialists at Johns Hopkins University developed what is now known as the “optimum gender of rearing” system in the 1950s to treat these conditions. Under this model, intersex children underwent gender reassignment at an early age so that children could grow up to be “normal” girls and boys. Psychologist John Money spearheaded this thinking and propagated the belief that you could make any child into a “real” girl or boy if you made their bodies match the gender desired.
As this Hopkins model spread around the world, more surgeons began performing genital surgeries on children without their consent. “Such procedures are frequently justified on the basis of cultural and gender norms and discriminatory beliefs about intersex people and their integration into society,” explains the United Nations.
And oftentimes, the standards used to determine genital anatomy were arbitrary. “Under the ‘optimum gender of rearing’ model, boys born with penises doctors considered small were made into girls – even though other doctors believed (and showed) they could be raised as boys without castration, genital surgery and hormone replacement,” explains ISNA. And the same rationalization happens with girls who have clitorises doctors think are “too big.”
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The procedures can cause permanent infertility, pain, incontinence, loss of sexual sensation and mental health problems such as depression and trauma. Not only that, but many of the children who undergo surgery are often lied to at the time of treatment.
“It’s not that big of a deal being intersex,” Odiele says. But the two surgeries she had, one to remove her testes and the another to reconstruct her vagina, leaves her feeling troubled. “It became a trauma because of what they did.”
Social stigma ,gender/sexual stereotypes or parental distress must not drive medical interventions for intersex people! #StopIGM #iad20 pic.twitter.com/UdHSIafKTl
— Iranti-org (@irantiorg) October 26, 2016
Other intersex patients have also shared similar experiences. Max Beck, who was previously known as Judy Enlarge, tells his story on PBS.
He spent much of his childhood and teen years conflicted about his identity and suffering through countless gender reassignment procedures.
“What was I? The doctors and surgeons assured me I was a girl, that I just wasn’t yet ‘finished.’ I don’t think they gave a thought to what that statement would mean to me and my developing gender identity, my developing sense of self,” Max writes. “The ‘finishing’ the doctors talked about occurred during my teen years – hormone replacement therapy and a vaginoplasty. Still, the only thing that felt complete was my isolation.”
“I wandered through that labyrinth for another ten years, with a gender identity and desires born of those medical procedures. I began to experience myself as some sort of sexual Frankenstein’s monster,” he adds.
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As the conversations around gender-identity and how it relates to biological sex continue to develop, medical professionals have become more open with the realization that the two don’t always align. A biologically male person can identify as a woman and vice versa.
“Our chromosomes don’t tell us who we are,” Dr. Arlene Baratz, a Pittsburgh breast radiologist with two intersex daughters, tells to ABC News. “We expect XX is pink and a girl and XY is blue and a boy, but we know from children with gender identity conditions that is not always the case, even when their bodies are perfectly typical.”
Intersex persons need to enjoy the same rights that we do. Stop the stigma….accept them. @intersexday #LetMeBeMe pic.twitter.com/sD6VNWNSlb
— Rhoda Odhiambo (@OdhiamboRhoda) October 26, 2016
With this knowledge, Baratz says that doctors today “anticipate how the child will feel as an adult and what they feel inside … gender assignment is aimed at putting gender identity and role in sync with each other as the child grows older.”
As doctors continue to understand the complex gender-sex relationship, this also opens room to offer parents of intersex children more support.
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Before opening up about her intersex status, Odiele simply talked about her experiences with her close friends and associates. But now she hopes to use her career to advocate for intersex youth.
“It is an important part of my life to talk about this,” she says.
In doing this, it gives younger children a role model to identify with and the knowledge that they are not alone. By telling her story, it not only alerts parents and patients of the repercussions that come with surgery, it also makes them aware of the kind of support intersex patients need.
To learn more about intersex experiences, visit the Intersex Society of North America website.
And if you are someone who is in need of a support group, these organizations are good places to start:
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