HEALTH

Here's What It Really Means To Be Intersex

26/01/2017 3:02 AM AEDT | Updated 20/10/2017 6:27 AM AEDT
Victor Boyko via Getty Images
PARIS, FRANCE - JANUARY 21: Hanne Gaby Odiele attends the Balmain aftershow party as part of Paris Fashion week at El Pompon Magnifico on January 21, 2017 in Paris, France. (Photo by Victor Boyko/Getty Images)

Hanne Gaby Odiele, a 28-year-old Belgian supermodel, recently became one of the first public figures to be openly intersex. 

The globetrotting model, who’s walked the runway for designers such as Chanel and Prada, has found a new role as an advocate for perhaps the most misunderstood and stigmatized gender identity. This week, Odiele announced that she will be working with InterACT, an organization that advocates for the rights of intersex youth. 

“It was important for me to make this declaration now, based on where I am in my life,” Odiele told Vogue in an interview published Monday. “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,” she added. “It’s one part of you, but it’s not who you are.”

What does it mean to be intersex? 

Although being intersex is relatively common, there remains a startling lack of awareness among the general population. Even as our culture has made strides toward greater understanding and acceptance of transgender rights, intersexuality remains under-recognized and taboo.

“This model coming out as intersex is really brave,” Elizabeth Reis, a professor of gender and women’s studies at Macaulay Honors College at CUNY and author of Bodies in Doubt: An American History of Intersex, told The Huffington Post. “People have such a misunderstanding about what intersex is, or more accurately, they often have no understanding of what intersex is.” 

So what does it mean? Intersex people are those whose biology does not meet our society’s traditional definitions of sex and gender. At least 1 in 2,000 babies ― and possibly as many as 2 in 100, according to some estimates ― are born with ambiguous sex traits. For some, the condition is clear at birth, while others don’t discover that they’re intersex until puberty or later.

“The simplest way to explain it is somebody who is born with atypical sex anatomy,” Reis said. “Their genitals can look different, or not ― sometimes their genitals look like any other boy or girl. They may not find out that they’re intersex until puberty because their internal reproductive anatomy is atypical.” 

Odiele was born with a condition called androgen insensitivity syndrome, meaning that while she is genetically male (having one X and one Y chromosome), her body is resistant to male hormones known as androgens. As a result, her physical makeup more closely resembles a woman ― she was born with internal testes, though no uterus or ovaries ― but her genetic makeup resembles a man. 

This is just one of many forms of intersexuality, and other intersex people have very different traits from Odiele. The designation of intersex actually refers to more than 30 different variations in which a person’s reproductive anatomy and/or genetic makeup doesn’t fit their gender.

For instance, an individual identified as a girl might be born with a larger clitoris or without a vaginal opening, and an individual identified as a boy may be born with a micro-penis or a scrotum that resembles a labia, according to the Intersex Society of North America. A person could also be born with “mosaic genetics,” meaning that some of their chromosomes are XX (female) and others are XY.  

Fighting for intersex rights

As a child, Odiele was forced into a surgery to have her internal testes removed, because doctors told her parents that she would develop cancer otherwise. There is no scientific evidence to suggest this is true. Odiele wasn’t informed of her surgery’s actual purpose ― she had been told the surgery was for a bladder problem. 

Unfortunately, this sort of experience is commonplace among intersex youth, who are often subjected to genital surgeries without full consent in order to “normalize” them into one gender or the other. 

But growing evidence suggests that the surgeries can be traumatic and unhealthy for these children in the long term. Nonconsensual genital surgeries on intersex children are irreversible and sometimes unsafe, and the United Nations children’s rights committee has condemned these traumatic genital surgeries as human rights violations

“The basis of wanting to do these surgeries has really been based on cultural values as much or more than medical or scientific values,” Reis said. “There’s not a lot of evidence that these surgeries are good for the children who undergo them.”

Reis is optimistic that Odiele speaking out about her own experience as a member of the intersex community can pave the way for positive change. 

“We need to be more accepting in our society of all kinds of difference so that parents don’t feel so pressured to have their child undergo some kind of surgery that they would not have wanted themselves,” Reis added. “Intersex people need to make the decisions about their bodies for their own selves.” 

“I hope that by telling my story,” Odiele said in an InterACT campaign, “more people get outraged at the human rights violations suffered by intersex children around the world.” 

CORRECTION: An earlier version of this article referred inaccurately to “gender traits” instead of sex traits.

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