I’m Emily Quinn, And I’m Intersex

By Emily Quinn

To my Friends and Family — oh, and the rest of the world too:

I’ve been told it takes balls to be in a PSA like this or to write a letter like this one. No, seriously! I have balls. Not, like, basketballs, or footballs.  I’m a girl who has testes.

I’ve kept this fact quiet for many years, 15 to be exact. I was 10 when I found out I was intersex, but it wasn’t until I was 22 that I even began to understand what that means.

Some of you reading this are my close friends and family members, and this might be the first time you’re hearing about this. If it is, I’m sorry. Please don’t be upset that I haven’t told you yet. It’s my story to share, and, like it is for most intersex people, mine has been a long and hard journey. It’s not always easy to talk about, but I’m excited to finally start being more open about it. I’m so grateful that you’re joining me on this.

Intersex is an umbrella term referring to people born with differences in their sex characteristics. These differences can occur in places like their genes, chromosomes, genitalia, reproductive organs, hormones, or secondary characteristics (like body hair). Personally, I have a condition called Complete Androgen Insensitivity Syndrome (CAIS). I have XY chromosomes and testes, but my body is entirely unresponsive to testosterone, and I developed as a female. Internally, I don’t have a uterus or ovaries, which means that I can never have biological children.

You might think intersex people are like unicorns, so rare that you’ve only heard about us in books and fairy tales. I like to think we are pretty freaking magical, but we’re actually not that rare. My AIS friends and I represent an estimated 1 in 20,000 births, and intersex people in general occur in about 1 in every 2,000.

Intersex people are not rare, just invisible.

Unfortunately, there’s a lot of shame and secrecy within our communities, perpetuating the invisibility. I’ve had doctors tell me over and over again that I’d never meet anyone else like me. (Thankfully, that was not the case.) So many intersex people like me have been instructed by our doctors, parents, and friends not to tell anyone about our conditions, which makes us feel shameful and unworthy.

I’ve been poked, prodded, and gawked at by so many doctors, it’s enough to make anyone feel like a science experiment. They say how excited they are to meet someone like you, they’ll “never meet another person like this, ever.” But when they say that to you as a kid, all you hear is “you’re a freak.”

As I got older, it only got a little easier to talk about. Most friends responded by telling me how lucky I was, or how jealous they were, and they didn’t really get what I was going through. Some friends said things so hurtful that it made me not want to talk to anybody anymore.

It wasn’t until I found the AIS-DSD Support Group that I began to meet people who understood what I was going through. I also joined Inter/Act, an amazing intersex youth advocacy group. There I started telling my story and, for the first time, became empowered as an intersex person.

So, why am I telling you all of this? Well, my advocacy journey so far as lead me to you, my friends and family. I’ve told rooms filled with doctors and college students, but now it’s time I stop keeping it from those closest to me. The more people I tell my secret to, the less it feels like a burden weighing me down.  These stories, if kept hidden, only perpetuate the shame, the stigma, and the hurt that young intersex people are experiencing everyday. I can excitedly say that it’s getting better for our community, but not quite fast enough. If telling my story helps just one person to feel less alone then my efforts have been worth it.

There’s so much talk about proper representation in the media, and I really feel for every under-represented person who can’t find someone like themselves to relate to,  inspiring them to do great things with their lives. Growing up I had absolutely no intersex characters to look up to. No books, no TV shows, no movies. Now, here I am today, so excited and honored to be working with MTV on developing Lauren’s intersex character for “Faking It.” It’s a groundbreaking step for intersex awareness, and it’s a dream come true to be able to advocate on issues that are so close to my heart.

Click here to see the rest of Emily’s post.