Op-ed: What's in a Name: Intersex and Identity

In 1987, I was outed to my parents by my older brother in a scene straight out of the hysterical queer comedy But I'm a Cheerleader:

Dad yells, "Why can't you be more like your sister!" Gay son replies, "Guess what? She's a lesbian!"

I hadn't told my dad because I was afraid he'd stop paying my expensive college tuition. I wasn't surprised that I was right, but I was surprised when, soon afterward, he started telling me to stop associating with those "people with psychosexual disorders."

I still remember thinking, Wow, how does he come up with these homophobic slurs? I hadn't yet learned that was how the medical community labeled gays and lesbians until 1973, years after my dad attended med school. So he wasn't actually intentionally insulting me -- he was just using the label he'd been taught.

Flash forward: People are no longer calling gays and lesbians disordered, but I once again find myself being described this way because I'm intersex. A few days ago, for example, a friend posted an xoJane article on my Facebook wall, and I got to read myself being referred to as a "disorder of sex development" (or "DSD") five times in the short one-page piece. Needless to say, it didn't feel good.

Most people I meet or know are shocked that anyone would describe us that way, but I remind them that there have always been attempts to classify people in marginalized communities as innately different or inferior. There's the long-discarded "psychosexual disorder" for gays and lesbians, and the recently discarded "gender identity disorder" for trans* people.

In xoJane's defense, just like my father, it wasn't intentionally insulting intersex people: It was just using our current medical label -- and probably got it directly from advocates. Yes, some advocates in the United States use the term DSD, particularly those who work with parents of intersex children. The reason I've been given is that some parents and intersex people themselves prefer to say they have a disorder or a medical condition to labeling their difference an "identity."

This might seem surprising until you take a minute to remember that, similarly, back when homosexuality was considered a disorder, most gays and lesbians didn't call themselves "gay" or "lesbian." Who could blame them? Homophobia was so strong that electroshock therapy was routinely used as a medical "treatment for homosexuality" throughout the 1950s and '60s. Even in the late '80s, I'd still hear people saying, "I'm a woman who loves other women, but it's not my identity." Or "Calling myself 'gay' just doesn't feel right."

Today, it's like deja vu hearing some people say, "The word 'intersex' just doesn't feel right." Or "It's just a part of me, it's not my identity." But again, it's not surprising given that we're currently classified as a disorder that many doctors want to "correct" -- in our case with "normalizing" infant genital surgeries.

In addition, we face a challenge that gays and lesbians don't: Many of us have to engage with doctors because of recommendations for treatment, and hence we're often taught since childhood that "disorders of sex development" is the name for what we are. Thus, many intersex youth use DSD to describe themselves. One such youth contacted me for support, and when I asked her why she kept referring to herself as disordered, she told me that's what she'd been taught. When I explained to her that prior to 2006 -- when the label was imposed on our population -- we were known as "intersex." She was shocked. She had no idea. She shared that DSD had negatively impacted her self-esteem, and within weeks she was identifying and speaking out as intersex.

Yes, despite some segments of society's resistance to embracing that intersex people exist, more and more of us are coming out loud and proud, just like I saw gays and lesbians do in my youth. And while some say DSD is better for those who aren't androgynous or LGBT, since intersex is associated with both, some of these proudly "intersex" folks are indeed straight and gender-normative. They realize that even if we're not LGBT, we're still discriminated against because we challenge sex and gender norms. A beautiful example (and I do mean beautiful) is talented vocalist and performer Dalea, who is inspiring intersex women around the world to be proud of who they are. You can watch her recently released coming-out video here.

I respect everyone's right to identify as whatever they want to, but personally, saying that intersex is what I am feels much better than saying it's something I have -- like a disease. I can see why describing us that way works for medical practitioners invested in providing us with medically unnecessary treatments, but I don't think it works well as a means to being treated as equal human beings who don't need to be "fixed." You'll notice that even when discussing diseases or disabilities, you hear people say, "I'm diabetic," "I'm deaf," or "I'm bipolar," more often than "I have diabetes," "I have a hearing impairment," or "I have bipolar disorder."

Identity politics has been historically successful as a means of dismantling discrimination. We've seen how helpful embracing the labels "gay" and "lesbian" -- rather than the medical label "psychosexual disorder" -- has been, and this approach has been helping the intersex community as well. Australia is the only country in the world that has attained civil rights protections for intersex people, and they did it by rejecting the pathologizing "conditions"/"DSD" model and being pro-"intersex" and "LGBTI" inclusion.

While some intersex people call themselves "people with intersex conditions" or "people with DSDs," it doesn't mean that it promotes equality to do so. It also isn't reason enough for non-intersex people -- especially allies -- to describe us that way. Just like LGBT people, straight people, black people, or white people, we're people, intersex people, and we deserve to be treated -- and discussed -- equally.

HIDA VILORIA is chairperson of OII, the Organization Intersex International, and director of its American affiliate, OII-USA. She educates about intersex as a writer, television guest (20/20, Oprah), lecturer, and consultant, and recently became 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. Follow her on Twitter at @hidaviloria or on the Web at HidaViloria.com.