‘It’s hard to come out as intersex . . . people still don’t know what it means’

Hida Viloria is an American author and founding director of Intersex Campaign for Equality. To be intersex means you are born with a reproductive or sexual anatomy that doesn’t fit the typical definitions of female or male – for example, someone born appearing to be male on the outside, but having mostly female-typical anatomy on the inside.

Q: Do you believe intersex people are stigmatised and misunderstood?

A: I think the biggest reason for this is society is so invested in maintaining a sex and gender binary. I should specify modern, euro centric society – because many indigenous societies did acknowledge sex and gender diversity. With colonisation, one of the first things that happened was that sex and gender diversity was viciously attacked, and often eliminated via execution.

Modern culture has a vested interest in pretending that only female and male exist because enemies of LGBT people recognise it’s important to erase intersex people in order to uphold homophobia and transphobia. Events such as the trans military ban here in the US demonstrate this. They know that admitting intersex people exist supports the acceptance of gender diversity and diversity in sexual orientation as well, because if not everyone is male or female than obviously it’s natural that not everyone is straight.

So everyone is pressured to fit into a binary expression of sex and gender – imagine where this leaves those of us who were born not fitting into this.

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In a world where queer and trans people are attacked for not being “real men” or “real women”, intersex people are literally the embodiment of that homophobia and transphobia. So we’re at the bottom of the totem pole in terms of that, and even other members of the community sometimes want to distance themselves to avoid this stigma.

I should point out though that the stigma we face plays out differently on an individual basis. Some intersex variances aren’t visible at all, and the people with them are statistically heterosexual. So these folks might not experience homophobia or transphobia at all on a daily basis, unless they come out as intersex. It’s similar to trans people who transition in a way that people can’t tell they’re trans. If they don’t come out they can bypass transphobia some of the time and even be rewarded for their male or female appearance, just as lots of non-trans people are.

By the way, I know lots of people use “cisgender” as a way of saying “non-trans” but I don’t because the term creates a binary system of gender that a lot of people don’t fit into. Track legend Caster Semenya is a perfect example. She’s been discriminated against because she doesn’t look or dress like women are “supposed to” and there’s been a lot of essays by trans folks calling this behaviour transphobic, and at the same time she’s cisgender because she was assigned and raised female and identifies as a woman. But how can a cisgender person experience vehement transphobia? It’s because the term doesn’t take into account that not everyone is born a typical male or female.

This ties back to intersex people being misunderstood even within the LGBTQIA community. While most people in the community are aware of the medical erasure intersex people face, they’re not aware of how we’re also erased by things such as the term cisgender, or of how harmful this is. When you don’t see yourself included in a term that your own community uses to describe gender it just adds to the feeling that you shouldn’t bother sharing that you’re intersex, even if you live in a place where it’s safe to do so. For example, I know people who live in the San Francisco Bay Area who’ve been openly trans for at least a decade but are closeted about being intersex.

It makes me sad but I get it because it’s hard to come out as intersex – harder for me today even than it was to come out as a lesbian decades ago, because at least then people knew what I was talking about.

Lots of people still don’t know what intersex means, and explaining it to them entails discussing sex characteristics, which isn’t comfortable. It’s why trans people have been saying it’s not appropriate to ask about their sex parts. But in order for me to explain what makes me intersex, I have to talk about my sex parts because that is literally what distinguishes me as intersex.

People born with typical male or female bodies don't have to experience this because everyone learns what being male or female means, usually early on at home or in school. It would make it so much easier for intersex people if the same were true for us, which is why I'm so happy about my next book (out in 2020), The Spectrum of Sex: The Science of Male, Female and Intersex, which I co-authored with a brilliant biology professor and novelist, Maria Nieto. It explains human sex development in a uniquely inclusive, neutral way, and also explores gender diversity and the relationship between sex and gender.

Q: What are the most efficient tools and strategies to help end intersex discrimination?

A: One of the things I recommend – because it's doable and powerful – is that no one speak about sex or gender without mentioning intersex. That would incorporate us into society overnight. Allies should also support the inclusion of intersex people in third sex/gender legislation because we are being cut up at birth to maintain a two-sex system. We have to admit that intersex is a third sex category and that intersex babies and minors are harmed by people who don't want to accept that. India was recently able to pass a ban on these surgeries in the state of Tamil Nadu, which has a population of more than 70 million. They did it by framing these surgeries as infant sex reassignment surgeries, which is in fact what they are, thanks to the work of fantastic activist Gopi Shankar Madurai, who is intersex and nonbinary.

Q: How do you feel the third sex marker might impact?

A: Having intersex recognised by a third sex/gender marker – which I use because the terms sex and gender are conflated in law – means surgery is no longer about "helping send this family home with a boy or a girl because that's all there is" because now we do exist, legally. So it's clear that changing who we are is committing an erasive act against an entire group of people, and we've seen the impact very quickly.

Just months after international headlines broke the news, in January 2017, that a Californian named Sara Kelly Keenan had been issued the first American intersex birth certificate, three former US Surgeon Generals issued a statement calling for what intersex activists have been demanding for more than 20 years. It urged doctors to stop performing medically unnecessary surgeries on intersex infants and children in favour of allowing us to make our own decisions about our bodies when we're old enough. By the end of the year both the American Medical Students Association and Physicans for Human Rights had done the same.

It's also notable that Keenan is the first non-binary American to have their gender legally recognised as such, in 2016. A person named Jamie Shupe got credited for doing it a few months earlier, but he later announced that "it was all a sham," and he's actually a man and male, as he was born. So Keenan was actually the first and it's one of many examples of how intersex people have played a formative role in the non-binary community, which often gets downplayed or overlooked.

Q: What was your own experience?

A: Although I was born and grew up in the first world, I wasn't subjected to any medical treatments to change me. So I'm blessed to have escaped all the trauma and harm associated with that, and I want people to realise that if we lived in a world free of prejudice, and more people had my experience, then being intersex would be no big deal. I was unaware of anti-intersex attitudes as a child, because they weren't thrown at me, and I grew up feeling just like everyone else. I noticed that I was more aggressive than other girls, but fortunately I was already aware of feminism and that people can express themselves differently from gender role stereotypes.

I grew up as a girl in a very sexist household, and forced to wear girls’ clothes, but I just grew up feeling like, ‘yeah I’m a girl, whatever, just doing what I’m doing’. And I think that that’s very possible. I know intersex men – who live successfully and are perceived as men in the world – who have genital variance. And they also, like me, grew up feeling fine. They weren’t basing their entire worth on this one organ.

Many doctors have sensationalised what it’s going to be like for intersex children. Parents are going to them for information, with the assumption that they need their help. So it’s very understandable that they would listen to the doctors. And I don’t judge parents who made the decision to do surgery unless they somehow knew more about its harms, which many don’t.

What parents most need to know is that we’re just people like everyone else. As long as an intersex baby is healthy – which is true in the vast majority of cases – there’s no danger in leaving them as they are. If they want to cosmetically change their body in some way they can do that later. There’s just no reason to do something so irreversible, that could irreversibly damage a healthy child both physically and psychologically.

Q: Some intersex people don't feel represented by the LGBTQ+ rainbow. What are your thoughts on this?

A: I'm super grateful that the LGBTQIA+ community has been including intersex people a lot more. Personally, I was lesbian identified from a young age so I've always felt like a member of the community, but I can understand why straight intersex people might not feel that way as being intersex is obviously not a sexual orientation. But neither is being trans and it's obvious how positive their inclusion in the community has been given how much progress the trans community has made despite being a smaller population, statistically, than intersex people.

So I hope that in the not too distant future even straight intersex people will understand that they’re integral members of the rainbow community, and that enough will have happened so that we all feel welcome and included in it.