June 7 , 2004
Since 1996, Alice Dreger has worked to reform the way the medical establishment and society treat intersex people. According to the Intersex Society of North America, of which Dreger is chair, it’s hard to say how many people are born with an intersex condition (featuring chromosomes, genitalia, or a reproductive system outside what is considered ‘the norm’ for females or males). Research suggests that as many as 1 in 100 people are born with such characteristics, while 1 or 2 in 1,000 are subjected to unnecessary and potentially hurtful surgery because of it.
Seven Oaks editor Stephen Hui interviewed Dreger, an associate professor of science and technology studies at Michigan State University in East Lansing, by telephone.
1. What sparked your involvement with intersex people’s efforts to reform the medical establishment and society’s treatment of them?
I did historical research for my dissertation on people who were intersex, and then people who had been born with intersex conditions started contacting me and asking me for my help in changing the current-day system. At first, I didn’t think there would be anything wrong with the current-day system. Then I looked and realised there were a lot of problems, in terms of the approach, from an ethical standpoint and a medical standpoint. And then, I thought it’d be pretty easy and quick to make some changes within the medical system by pointing them out. I was naïve, and eight years later, I’m still working on this.
2. What do you think is the greatest myth about intersex people?
Probably the greatest myth is that you can’t survive as an intersex person, in terms of your psychology — that it would be so shameful and so stigmatising that you would kill yourself. The second myth being that people with intersex conditions have fully male and fully female anatomy put together, which they don’t. You can’t have that physiologically. So, there’s a physical myth, and there’s a psychological myth.
3. Are intersex infants treated differently in Canada than the U.S.?
They’re treated differently depending on where the children are born. So, I wouldn’t say that the difference is Canada versus the U.S.; it’s Toronto versus Montréal, versus New York, versus rural Michigan. So, what treatment you get depends on which doctor you happen to run into, which is actually true of a lot of medicine. But it’s more noticeable in intersex. So, in some places, it’s literally who’s on call when your child is born. You’ll get a different treatment depending on who’s on call.
4. Now, how far has the struggle come, and where is it headed?
I would say that we’ve made a lot of progress. We’ve used help within the media to get the word out about what intersex is. So, I would say, it’s safe to say millions more people in Canada and the U.S. know about intersex, who didn’t know about intersex eight years ago. And, I would say that the medical establishment knows there’s an issue, which they didn’t know when we started. So, they are locked in active debate, and in fact, many medical professionals actually agree with ISNA’s mission. So, there’s been great progress there. But it’s by no means over. Most kids still with intersex get referred for surgeries, which are medically unnecessary, and many people still experience intersex as a profoundly shameful thing, which it doesn’t have to be.
5. There does appear to be a growing awareness of intersexuality in the media and pop culture. Now, is that coming from the actions of intersex advocates and intersex people? Or, is that coming from somewhere else, like an interest in the public?
It almost entirely originated from Cheryl Chase, who is the founder of the intersex rights movement and the founder of ISNA. If you look at media accounts of intersex, you can trace almost all of them back to Cheryl, actually, and her work — although she’s also sort of recruited armies to help her. And from that, the media interest has taken off. And so, for example, Jeffrey Eugenides’ novel, Middlesex, which won the Pulitzer Prize last year: the protagonist in that is actually a member of the Intersex Society of North America, in the novel. And you’ll see that he actually cites my book at the beginning of that, and my book was influenced by Cheryl’s. So, you can see how this stuff goes back to, really, one woman with a cause. But it’s taken off since then.
6. How have such representations of intersex people in pop culture helped or hindered progress?
Some of them have helped by getting the word out about intersex, and some of them have hurt by maintaining myths. So, you get these reports that say somebody’s living in a third sex, which is not really what intersex is, or that somebody is a hermaphrodite and has both all the male and all the female parts, which is also not what intersex is. And often, it’s confused with transsexuality or transgenderism. So, in some ways it’s helped, because it’s really gotten the word out, and in other ways it’s created some confusion.
7. So, how can citizens support the right of intersex people to determine their own genders?
Well, the main thing ISNA’s trying to do is not to make it so that people can determine their own genders. We actually think everyone should be able to determine their own genders, in the sense of: if you want to legally change your gender and socially change it, you should be able to do so, whether or not you’re intersex.
The main thing that ISNA tries to do is reduce shame and secrecy regarding intersex. So, the way that people can help is to talk openly about intersex when appropriate times arise, and when they encounter a case of intersex, to treat it openly and not with shame. So, ISNA believes, and I believe, that you can assign intersex children a gender, as boy or girl, when they’re infants. But that doesn’t mean you have to do surgery on their genitals. That can wait until later, if it’s medically unnecessary.