Tuesday, 11 November 2014

I'm Intersex and My Body Works Just Fine, Thank You


For many intersex people, the condition is still shrouded in shame and secrecy.  ​Children often have their genitalia removed or "tidied up" at birth, obviously without being able to give consent. Because of this, there is little research into the long-term effects of being intersex, but those who have either had their testes removed or their enlarged clitorises mutilated often have long-term hormone problems.

Striving to stop the perpetuation of false information and general prudishness, Quinn recently came out as being intersex in an  ​open letter after MTV's show ​Faking It brought on an intersex character that Emily consulted with them on. 

Emily Quinn. Photo by ​Chloe Aftel

Going back, what were the initial indicators that you might be different?

​ In my case, there weren't too many when I was first born. They would have had to have done a chromosome test to find out. As I was growing up there were small indicators, like, I was always tall with big feet. I have an aunt who has AIS (Androgen Insensitivity Syndrome) as well, and she told my mom that she thought I might have it, so mom took me to the gynecologist when I was ten and that's when we found out. 

But there was nothing visible about me in particular—which is usually the case with complete AIS. If I had responded to the testosterone in my body at all then my genitalia would have "masculinized" a little. But for me that wasn't the case.

Right. So, there's ​CAIS and ​PAIS. What's the difference?

AIS is on a spectrum. You could be completely insensitive, which is pretty much what I am, all the way down to just partially insensitive. So there are—albeit not a lot of—AIS men. I fall under CAIS (Complete Androgen Insensitivity Syndrome) so I present as female, but I have male (XY) chromosomes and testes.


If it ain't broke...

Right. There's no point in having them removed. Unless they herniate or something, or, like I said, become cancerous. But if I get them removed I'll immediately have to go on hormone replacement therapy until I'm 60. The testes are what are making my hormones, so I would need to replace that or I'd develop osteoporosis or go through menopause. I'm very stable right now, health-wise.

So why might some doctors say you should have them removed?

People want to "fix it." Doctors want to fix the problem that they imagine is there. That's the biggest hurdle, that doctors are uncomfortable with the idea that a girl could have testes. A lot of them believe that they have a high risk of becoming cancerous, because there is not a lot of research on women with AIS with their testes.


Why is it important to have the I and T in LGBTI? They're not sexual minorities.

I mean, L, G and B are about sex. T is about gender, and I is about biological sex. But one of the new acronyms that I keep seeing is GSM, which is Gender and Sex Minority. I think having the I in LGBTI is important, though, because we go through a lot of the same things. We feel ashamed. A lot of people are bullied and do feel like they're different, and being in a minority that's related to gender, sex, and sexual orientation, they're connected in lots of different ways. That's not to say that all intersex or LGBT people feel like that. 

It's hard because, with LGB people, there's nothing medical that you can fix (as much as some people like to think their is). And with us, because of a medical diagnosis, a lot of people who are LBGT don't think we belong in the LGB community. But I think that the important things that a lot of LBG people go through—feeling stigmatized, being closeted—are important binders that we can take away from the LGBT movement. They are things we feel on a daily basis, too.

Why is it important to you to be such a visible presence for AIS people?

I was told I was the only person like this when I was growing up, and it was very lonely and scary. I wanted to look into the media for somebody to say that they were the same as me. I remember reading about certain celebrities and wanting them so badly to say that they have AIS, just so that I didn't feel like I was such a freak or a horrible person. So that's the main reason. I don't want any kids going through this to feel like that.

I'm in a place where I'm very comfortable with my body, but not a lot of people are, and that's not a good place to be. But more than that, it's about all of these surgeries that happen without consent, on babies, on children that are two or three, even on adults. If people become more accepting about it then we will get more doctors who think twice about operating to try and "fix" us, to try and take away the thing that is making someone else uncomfortable. We're not broken. 

Read Emily Quinn Interviewed by Hanna Hanra on Vice