Intersex Activist and Writer Hida Viloria on Being 'Born Both'

"One of the biggest challenges I think we have is that our culture is very shy and prudish about talking about genitals," Viloria says

"Everyone benefits from accepting intersex people. Literally," says Hida Viloria. Credit: Courtesy of Hachette Book Group

As a young child changing into a swimsuit at the pool, Hida Viloria first noticed that other girls looked different "down there." From this moment, more personal revelations ensued, some funny, some poignant – and all leading to the realization that Viloria was intersex: one of thousands of babies born each year with physical sex characteristics that don't fit stereotypical definitions of male and female.

After connecting with fellow intersex people – who are as common as redheads – Viloria attended the first-ever intersex conference. After learning that intersex babies with indeterminate genitalia were being subjected to surgeries, often leaving them with pain, body dysphoria, and difficulty experiencing sexual pleasure as adults, Viloria was determined to end these surgeries and provide a better future for the intersex youth of the future.

This personal story and a wealth of history around the intersex movement, begins Viloria's memoir, Born Both, which is simultaneously the story of a personal journey, a chronicle of an activist's work, and a depiction of a movement. Viloria, who escaped medical intervention, uses "s/he" and "he/r" pronouns as an acknowledgment of he/r feminist upbringing and to honor her genderfluid identity. In Born Both, through Viloria's revelations around sex, gender and presentation, we gain an evolving understanding of the movement and what it means to be intersex – both publicly as an activist and on a deeply personal level.

On the phone, Viloria is trying to remember a Prince lyric. After a moment, s/he gets it: "I'm not a woman, I'm not a man, I’m something you'll never understand."

"Make sure you put that in!" s/he says, laughing.

Rolling Stone spoke on the morning of Born Both's pub day to talk about Prince, language, activism, love and self-discovery.

In the book, you talk a lot about the importance of narratives and language; could you could speak to that a little bit more?
I think that language is a lot more important than people really give it credit for. People are becoming more aware of its importance, with what's going on politically and what they see in the press – all this spinning of the truth.

Oh, absolutely. Now more than ever.
Right? And I think that the one good thing about that is it's making people aware of exactly how important language is for a species like ours that uses it constantly. We've gotten into a position where there's so much division in our culture and our society, and I think that a lot of that could be avoided if people were more careful and precise with their language and really kept in mind what they're trying to say when they say things.

For people that are marginalized – I think this happens especially for trans people – people say things that don't take them into account, and inadvertently either devalue who they are or devalue their existence or reality. Picking words so that everyone is affirmed is a lot easier to do than we realize.

When you're writing about your first appearances in the media, you talk about being anxious about representing your entire community, as not every intersex person feels the way about their body or identity the way you do. That's a real struggle in activism, so how did you go about that? Who do you appeal to? How do you represent yourself?
One of the things that I've always kept in mind which I think has been very helpful as an activist is: Who is my audience? The people that I was trying to appeal to were conservative parents, especially in those early appearances. 

My goal was that a parent who might have recently had an intersex child or have one in the future would see my interview and think, "Oh, being intersex is fine and this person has been able to grow up happy and successful and feel good about themselves. There's no reason I have to cut up my child's body in this non-consensual, irreversible way. I'll just let them grow up and decide later on if they want to change anything about their body, the way most people get to decide."

With that goal in mind, there were certain things that I chose to speak about instead of others. There were ways that I chose to dress instead of others. I think that keeping your goal in mind is the most important aspect, because there are points that we could make that will be missed if we're saying them to the wrong people.

That's so true. Though throughout your attempt to appeal to really conservative parents, you never conformed to either side of a gender binary.
You know, it's funny because I didn't realize until much later – in fact, until kind of recently – that that was a notable thing. I just did it because I felt that if I'm going to be advocating for human rights and equality for intersex people, I needed to really be very honest about the fact that, as an intersex person, I felt neither male nor female.

It was such a given for me, especially growing up as a person that experienced a lot of racism as a child, which most people are surprised about, because I'm pretty pale. I grew up with a family with really thick accents; we were obviously not American and we weren't white in the way that the people in our neighborhood were white, and I learned very early on that you can't try to escape discrimination by pretending you're something that you're not.

That is a tough lesson.
Right? I know! And I would see people doing it all the time, all the other Latinxs saying, "Oh, we're from Spain!" And I was thinking, "Please! You're from Ecuador, you're from Peru!” They were literally lying just to try to be whiter. And I really didn't like that. I just didn't respect it because I thought, "Oh, okay. So you're throwing everyone else under the bus? You're just gonna pretend you're not what you are so you can get white approval and try to assimilate into a white community?"

So when it came to finding out I was intersex, and I saw how all these surgeries happened because of the idea that everyone has to be either a man or a woman, I thought, "Well, I have tried to pick my 'true gender,' and the truth is they are both me." There was really no community around that and even in the intersex community it was still stigmatized, but I just felt there was no way I could hide it. In the same way that I wasn't going to pretend that I was white and not Latinx, I couldn't pretend that I was binary just to try to escape this.

Racism has a huge impact on activism in general, on how it happens and who is advocated for. I was hoping you'd elaborate a little bit more about that.
I think that people have traditionally been very defensive about just the notion of racism, especially in activist settings. If it gets brought up, what I've seen is a lot of denial and backpedaling from white people, to the point where the focus is lost. My approach has been like Michelle Obama's "When they go low, we go high." They go low, I work harder. They push us out, I push myself back in even harder. The only thing that's gonna change this dynamic is for people of color to make ourselves part of the conversation.

As uncomfortable as it is, as difficult as it is, as painful as it might be at times because we'll get portrayed as divisive or critical, and even further marginalized… if we dare to speak out, we just have to keep going. When I see people like Laverne Cox and Janet Mock getting their voices out there, it makes me so happy because it's change that I've been wanting to see. For me to have my memoir, the first memoir from a big four publisher by an intersex person, and to know that all these themes of racism are in there because of my Latinx identity, it's the most fulfilling thing that I could have asked for.

The idea of non-binary as an identity feels really expansive. It seems like whenever social climates change, norms change and that affects how we identify. People who are in high school now have access to this language that I never had, so they're expressing themselves in ways that are truer to themselves than I could have, when I was younger.
I lecture at universities pretty frequently and one person approached shyly and said, "Wow, it's kind of incredible to see you because I saw you back in '99 when I was young." They said that I really helped them to begin to look at gender entirely differently, that they began to think, "Oh, I actually can contextualize myself as both." And that was a really deep and beautiful moment for me because I realized that in being authentic to who I was, especially early on, helped and supported other people for being themselves.

I've heard adults my age talk about their concerns with how many young people are identifying as nonbinary, and there's usually a sadness from women that a lot of young women seem to be discarding their female identity. I understand that as someone who grew up in an incredibly sexist home and wanted to embrace being an empowered, feminist woman. But I get it when I think about what's going on culturally. I think it started in the 80s with the Reagan years. After having this fluid era, with Prince and Bowie, things got kind of conservative, and things got very binary in terms of gender expression. I think if I was a youth growing up today I might look at that highly gendered adult structure in mainstream society and be like, “Forget that! I'm not any of those things. I'm not buying into any of those ridiculous stereotypes, and I don't even know why they exist!”

The subject of romantic love is a huge part of the book in a subtle way. You talk about desirability and attractiveness in connection to being intersex, and pushing against the stigma that different kinds of bodies are somehow undesirable.Your depiction of struggling with romantic love is so honest. What was your motivation for incorporating it into the book in the way you did?
My motivation is that I think love is an issue that is critical to intersex people. An enormous part of the reason that we face the human rights violations that we do, such as intersex genital mutilations, is that people have these misconceptions that intersex people can't be loved.

When you start to talk to parents, their main concern around having an intersex child who has a visibly intersex body is, "Who will love my child? Will my child be lovable?" And different doctors and psychologists and other stakeholders have decided that "No. It would be very difficult for an intersex person to find love," and honestly, I think that is so far from the truth. One of my oldest friends actually said to me during some of my struggles that she thought that my biggest challenge around love was that because I was so fluid in my presentation, I appealed to so many people and it made it hard for me to choose and make the right choices. [Laughs] So that's funny, right? And that's pretty much the opposite of what people like to speculate around being intersex.

In fact, the end of the book was a bit of a risk for me. I put in the relationship I was in, which felt like the true love that I had always been searching for, even though it was new at the time. And now I will share that there is a happy ending, because I am actually now with the person that the book ended with, and we're committed, and I've never been happier, or felt more at peace and stable and content and deeply full of joy as I do.

That is so wonderful to hear.
Yeah, and I think that I really needed to believe that I could have this. For different reasons not really related to being intersex, but more related to having grown up with a lesbian identity. I had absorbed this belief – and I hadn't even realized that I had absorbed it – that love was going to be unattainable for me because I wasn't straight. It's only when I realized that and then discarded that and really embraced that I wanted love and I deserved it, and I believed I could have it, deep down in my soul, that it came. And it actually came very quickly after that.

That's the secret.
Yeah, exactly. Exactly.

Toward the end of the book, you get into all of the legal work happening right now. Issues around protections for specific people have come up again, most recently in these bathroom bills. Do you have any advice for activists and young people who are dealing with these issues?
I think that the bathroom laws are going to be brought down by intersex people. The existence of intersex people is very helpful in this bathroom debate because you have intersex people all the time using restrooms. I've been using restrooms for over two decades that don’t match the gender on my birth certificate or the reproductive organs that I have!

My advice to activists and young people is to start talking about intersex people because if intersex people were welcomed and acknowledged from the beginning, transphobia and homophobia would not even be a thing. You can't have these binary, transphobic and homophobic attitudes when you realize that biological sex comes in a multitude of categories and expressions. If intersex people, if we had been known about, these anti-trans bathroom bills would have never been drafted.

The whole structure of things would be different, outside of a binary.
Exactly. And yet, you know, sadly, there is an aversion, even within alternative communities, to really embracing that intersex people exist and are out there. Everybody knows an intersex person, they just don't realize it because that person hasn't shared it with them. I don't think that we should learn anything about men and women or males or females without learning about intersex people. All of this is just an illusion. This binary model of sex and gender is in fact an illusion that was set up centuries ago to subjugate people.

Talking about intersex people is very difficult for people. I think they're afraid of getting it wrong for sure. But I think there is still this real prudishness around talking about it even though everyone has parts, and everyone is different but there is a real taboo, still, about talking about genitalia and talking about different manifestations of human sex.
I think that one of the biggest challenges I think we have is that our culture is very shy and prudish about talking about genitals. And trans people should be able to say, it's none of your business what's between my legs. Yet for me to educate about who I am and how I'm intersex, I have to talk about what's between my legs, right? I have to demystify that, and that's what I've been doing, and it's a taboo topic.

Even within the intersex community, I've noticed that there is a lot of focus on people who have typical genitals but just have these differences in chromosomes. However, let's not forget those of us who are most marginalized. The whole intersex movement was started by people who were born with genital variance and had been subjected to surgeries to try to make them more male or female. Those are the intersex people, still, who are suffering the most—vulnerable babies who are born with genital variance and run the risk of being irreversibly cut up.

Despite that fact there is this real prudishness about just talking about it, I think again that it will change. I think that that is just something left over from our puritan cultural narrative.

And acceptance of intersex traits will allow for more awareness and more variance in whatever is medically classified as normal.
Everyone benefits from accepting intersex people. Literally.

What's next for you?
I'm going to be kind of shifting my focus to be specifically about creating protections for adults. Initially, we've been fighting to end these surgeries, right? Because it's so harmful. However, the movement as a whole hasn't been addressing what it's like to be an adult with an intact intersex body. But you can't ask parents or other stakeholders to stop operating all of a sudden without creating a safe world in which to be intersex, right?

So, my next focus is going to be on addressing the TSA body scanner issue. I think that's a real potential pathway for gaining this recognition for sex discrimination that intersex adults experience. The scanners literally check the body for male or female genitals, so if you have neither, you're being singled out and treated differently just because they didn't create an inclusive system. If I'm being singled out just because of the body I was born with, that is sex discrimination. Pure and simple. So I think that's a really strong avenue for legal protections.

I'm really excited about the future, honestly, because I think that there's a lot of ways that intersex oppression can be addressed and is going to be addressed and that's going to help the whole human species.