I'm Intersex and My Body Works Just Fine, Thank You
People need to become more accepting so doctors stop trying to "fix" those like her, says Emily Quinn.
Emily Quinn is a 25-year-old animator who works at Cartoon Network. She is also intersex. For her this means that, while she has a perfectly normal-looking vagina, it's not a uterus and ovaries she has inside—it's a pair of testes.
Like the rainbow flag, there are many shades to being intersex. The term refers to people born with differences in their sex characteristics, which can occur in genes, chromosomes, genitalia, body hair or reproductive organs. Quinn—who doesn't respond to the testosterone that is produced in her testes (her body turns it into estrogen for her)—reckons she represents about 1 in 20,000 births, with intersex people generally representing about one in every 2,000 in North America.
For many intersex people, the condition is still shrouded in shame and secrecy. Children often have their genitalia removed or "tided up" at birth, obviously without being able to give consent. Because of this, there is little research into the longterm effects of being intersex, but those who have either had their testes removed or their enlarged clitorises mutilated often have longterm 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.
VICE: Hey Emily. Why have you come out as intersex now?
Emily Quinn: It all came about with Faking It. This is the first time that intersex people have had representation, ever. It's a main character on TV show—not just one for shock and awe value. This is the first time that there's been a series regular who tells a story that is "normal," that being intersex is something people live with every day. I've been consulting with them since June. I have wanted to speak publicly about it but it never felt like the right time. I wanted to come out in a way that made an impact rather than posting on Facebook one day.
What has been the public reaction to both you coming out and the show itself?
Generally the public reaction has been good. On Reddit you get a lot of... well, let's say people on the internet aren't always the best. But people on there are also really supportive. Whenever it would get rude or out of hand, there would be people who would get on those commenters, which was great. Public support has been really good for Lauren, the character in Faking It. Everyone's responded really well to her. Being intersex is something that most people don't know about—it may not even be a word they've ever heard—and they've been excited to learn about it and support of her character. It's really normalised it, which is exciting.
How did MTV initially approach you?
I work with Advocates for Informed Choice, a legal group that deals with stopping surgeries on intersex children. When MTV decided to do an intersexed storyline they contacted GLAAD, who contacted the legal group, and since I lived five minutes from the studio and already worked in Hollywood, they connected us. They had no idea what they were going to do. I'm still going in and consulting as they don't know much about our lived experiences.
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 "masculinised" 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.
What's the AIS community like? Is there a pecking order?
For the most part it's very supportive. We all go through a lot (of valid, varied experiences). And so to bring pettiness like that to the community, well, it's just not helpful. Although when I was doing my Reddit AMA there were people who were like, "Why do you need to do this?" Because, in my case, I present as fully female and I feel female. A partner wouldn't know. So why would I need to bring it up?
In times like that I'm not "intersexed enough", but that's also part of the reason why I feel like I have to be an advocate for it. Because, like me, there are so many people who either do have AIS or are intersex and are dealt with differently. It's also different because I am one of three or four women I know who have their testes. I could give you a list of 300 women who don't. Sometimes it feels like I don't fit in because I haven't been operated on, but I understand how close I've come to that happening.
That's interesting. Would you ever have them taken out?
At this point, only if they became cancerous. But I don't see that happening. I have them checked once a year. But I don't really want them taken out and it's also hard to find a doctor who is OK with it.
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.
Well, some women might not know they're AIS because they have been lied to, or because they didn't find out until they were a lot older. That's when doctors might persuade them to have the testes removed. The statistics that do exist on internal testes are for men who have theirs inside the bodies, and they are at a higher risk of being cancerous. But they have no statistics on it for women.
You're not only pushing medical boundaries, then. You're also questioning the profession altogether.
A lot of doctors have outdated medical practices. That was the problem with my recent doctor—she's older and her medical training was a long time ago. When you're a doctor going through medical school you're trained to fix things. It can come from a place that's good, but I know people who have had them removed and have had so many consequent problems arise from it. And because my body is naturally at a place where it's OK—I don't need to take pills to fix a problem that was never there—I do sometimes feel that some people can become a little jealous of that.
Our bodies' ability to adapt is mind boggling. So, just to rewind a little, the testosterone that's produced by your testes is turned into oestrogen?
Yes. All bodies do it, actually. It's called aromatasing.
I had no idea.
Well, my body is running fine—why mess with it! Especially when it's dealing with something like hormones, which are so crucial to your every day needs as well as your development. There's a woman in Australia who I'm about to email my medical records to because she's trying to recreate what the doctors tried to take away from her.
It must be difficult for some people because, if surgery happens when you're a kid, you have no way of knowing or any choice in the matter.
Right. I grew up in Utah, which is a very conservative state. My doctors literally had no idea about me or what AIS was—like, to the point where they couldn't find my testes. I only found them this year. My doctors didn't know what to look for or where to look. They knew from my blood work that there was something there making testosterone but they could never find out what.
And where were they?
They were right where they were supposed to be! Right where my ovaries would be in my pelvic cavity. But because my doctors could never find them, they could never remove them. So I was lucky. They scheduled a laparoscopic surgery to have a look but I never went through with it because it seemed scary. It turned out to be a good thing.
How helpful is it for you to have an internet community?
It's so helpful. If you had asked me ten years ago I might have answered differently because, when you're a pre-teen searching for sexual disorders on the internet, it's terrifying. I turned to the internet for information and clarity, because the doctors didn't know what was going on and my parents weren't very proactive. Being connected to people is so empowering, though—it's the reason we can finally all talk about this stuff.
We are realizing we are not alone. Doctors tell you all the time, "You're the only one like this," or, "You'll never meet anyone else with this," which makes you want to talk about it. Having the ability and resources to connect with others is so vital to make you feel like you're not a freak and you're not alone. You're different, but it's OK.
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.
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