Imagine hiding a part of who you are as basic as your maleness or femaleness, not just because you know people have negative feelings about it, but because many actually think it’s a crazy conjured-up myth? This is what some face when we “come out” as intersex — a term that refers to those born with sex characteristics, including genitals, gonads, and chromosome patterns, that don’t fit typical notions of male or female. Yet despite this, supermodel Hanne Gaby Odiele did just that last month.
While many, including myself, applauded her decision to spread intersex awareness, many others wondered why they hadn’t heard more about it, sooner. As Sam Levin of The Guardian even pointed out this past January in an article about Sara Kelly Keenan, the first American to be issued an intersex birth certificate, while a lot of awareness has been raised about what it means to be transgender, the same can’t be said about intersex. Which raises the question: Why not?
Recently, I saw an exchange on Facebook that shed some light on the issue. An intersex person claimed that there’s no such thing as “being in the closet” when you’re intersex. His reasoning was that he isn’t necessarily hiding the fact that he’s intersex; he’s just choosing not to disclose personal, private details about his sex organs.
His statement echoes one often asserted by trans people: “What’s between my legs is nobody’s business.” It’s true; we live in a society where people aren’t expected to publicly share details about their sexual anatomy. This leaves intersex people in quite a pickle, though, when it comes to living openly and authentically, because since so few people know what “intersex” means, the very act of coming out as such often entails revealing personal details about our bodies.
Mind you, any time someone allows themselves to be identified as “male” or “female,” they’re simultaneously conveying ideas about what kinds of genitals they possess — and nobody has a problem with this. It’s only when someone conveys something other than typical male or female sex characteristics that people take issue. For example, I recently saw a mother post on Facebook that she’d been accused of “oversharing” because, while advocating for her child’s right to determine who they are, she had shared some details about what exactly makes her child intersex (there are many variations, resulting in very female, very male, or in-between-looking people).
It infuriated me, because I know that parents like her are doing what loving parents have done for ages: standing up for their children against those who don’t accept them because of the way they were born. I couldn’t be more impressed by parents like these or prouder that some have reached out to tell me that hearing me say how happy I am that I’m intersex inspired them to love and accept their children as they are.
This brings me to the other, more daunting reason that it’s been hard to spread awareness about what being intersex means: Many of us have had the possibility of knowing what it’s like stolen from us. I’m referring to the fact that intersex people are routinely subjected to what have been called “normalizing” or “corrective” cosmetic genital surgeries as babies or young children, in an effort to make us … not intersex. As Reuters reported recently in an article about Swiss intersex activist Daniela Truffer: “Because of the surgery and hormones, she cannot say if she would have felt more like a boy or a girl given the choice. ‘It's a question I cannot answer,’ Truffer says. ‘Part of the trauma is this question of … What might have been? It's something that always haunts you.’”
I’m so grateful to the many who have bravely shared how nonconsensual “corrective” surgeries hurt them. These surgeries are performed not because of any evidence of benefit, but simply because society’s preconceived notions about being intersex are so negative. That, my friends, is the very definition of prejudice, yet intersex genital mutilation — or IGM, as the practice is also known due to its similarities to female genital mutilation — is still so common that many have incorrectly considered it synonymous with being intersex.
If you’re wondering why on earth IGM exists, particularly given how much care is taken not to rush transgender youth into taking hormones or undergoing genital surgeries, it’s because people worry about assigning a baby male or female if their body doesn’t look exactly like either. However, I know from personal experience that intersex people can be assigned and raised as male or female without altering our bodies. In fact, that’s exactly what intersex activists recommend parents do (since equal rights, protections, and services are only available to males or females in our society), with the awareness that, like all children, we may grow up to identify as a different sex or gender.
We know that assigning intersex babies something other than male or female would only make them more vulnerable to existing negative attitudes. For example, although intersex is just a natural variation, like red hair (and statistically just as common), it’s still deemed a medical “disorder” — like being gay or lesbian was until 1973, and trans until recently—with the term “Disorder of Sex Development.” Even though many intersex people, including myself, oppose the term, we’re often called that or worse by medical experts, such as one who in 2012 referred to us as “accidents of nature.”
Indeed, negative attitudes about intersex people, a.k.a. interphobia, are so strong that we’re sometimes killed as babies in Africa and Asia. In order to address these human rights abuses, many of us, including most recently Odiele, have come out as intersex. Yet when adults like Odiele and Truffer reveal they’re unhappy they were subjected to IGM, the fact that they’re attractive, heterosexual, highly functioning, or all of the above is sometimes deemed evidence of the practice’s “success.” The rationale, as shared with me by a multitude of adults who’ve spoken with their doctors about IGM, goes something like this: “We hear you, but you seem fine, and trust us, you’d have been much worse off if we hadn’t operated!”
Would they have? That’s the million-dollar question, but unfortunately, it’s hard to answer. To do so, we’d have to hear from folks who haven’t undergone IGM, and have bodies that don’t look typically male or female. I know others like myself who fall into this category, but unlike IGM survivors, most aren’t speaking out publicly. While a few of us have, in order to challenge the notion that intersex people suffer more without IGM, a handful isn’t enough. As Dr. Barry Kogan, former president of the Society for Pediatric Urology, said in 2014 about cases of genital difference, “It’s really easy to say the outcomes of surgery are not as good as you think they are, but we don’t know the outcomes of not doing surgery.”
I know, and as I share in my memoir Born Both: An Intersex Life, having an overabundance of the only organ in the human body whose sole purpose is pleasure is far from a negative thing. Similarly, an intersex man I know whose atypical penis was left as is has shared positive experiences. Still, I understand why the majority of people like us haven’t come out. I can still vividly recall, for example, when an intersex woman told me that she was “so tired of everyone thinking that we look like those hermaphrodite statues in museums.” I was shocked that she’d said that to me of all people, someone she knows has a body that, unlike hers (she doesn't have ambiguous genitalia), looks very much like those statues. But I realize now that this is just another example of how deep interphobia can run.
Recently, several people came out to me as intersex. One has been openly queer and trans for the entire 20 years that I’ve known them, but they had never shared that they’re intersex. It made me sad to realize that, at least for some, it must feel safer to talk about being trans than about being intersex. Perhaps it’s precisely because, since everyone knows that most trans folks “start off” with typical male or female bodies, there’s not the same aforementioned focus on “what’s between your legs.”
However, with intersex people being as common as redheads, the chances of you already knowing someone who’s intersex are fairly high. We are your neighbors, teachers, doctors, lawyers, friends, and even family members. So how can you help lessen the hurdles we face to living openly as who we are? Well, you can begin right now by being inclusive in referring to humans as male, female, and intersex — thereby ending our invisibility.
The truth is, there are probably many people living happily but silently in their androgynous intersex bodies — like I was before I learned about IGM. To them I say, as my queer elders did before me, “Come out, come out wherever you are!” We desperately need to hear from you in order to demonstrate what I already know so well: Intersex people, like those born male or female, can grow up and live happily just as we are.
HIDA VILORIA is a writer, activist, and author of the forthcoming Born Both: An Intersex Life (Hachette Books, March 14, 2017), who uses s/he and he/r pronouns (pronounced she/her) to acknowledge he/r gender-fluid Latinx identity and intersex female history. Hida has written about (Ms., CNN.com, American Journal of Bioethics) and ;advocated extensively for intersex and nonbinary rights as an openly queer lecturer, consultant, and frequent television and radio guest (Oprah, 20/20, BBC). S/he is chairperson of the Organization Intersex International and founding director of OII-USA, and was the first openly intersex person to speak at the United Nations, along with Jason Collins and Martina Navratilova, at the event Sport Comes Out Against Homophobia. S/he lives in Santa Fe with he/r partner and stepson. Follow Viloria on Twitter at @hidaviloria or on the web at HidaViloria.com.