BTL Interview by Dawn Wolfe
Dr. Alice Dreger, an Associate Professor of Science and Technology Studies and Associate Faculty in the Center for Ethics and Humanities at Michigan State Univesity, is also the current Chair of the Intersex Society of North America (ISNA). Dr. Dreger spoke to BTL on September 10, 2004 about gender, sexuality, civil rights, and the potential effects of Proposal 2 on the ability of intersex individuals to marry.
Between The Lines: Could you please define “intersex” for our readers? For example, how is being intersex different from being transgender?
Dr. Alice Dreger: Intersex refers to a biological difference that you’re born with that somebody identifies as being not standard for males or not standard for females. So when you have an intersex condition, usually a physician has decided that your body has some sort of anatomical difference that makes you not fully male or fully female. For example, you might have a big clitoris, or you might have something called an ovo-teste which is part ovarian and part testicular or something like that. Being transgendered is feeling that you are a gender other than the one to which you were assigned as a child. Some people with intersex are transgendered because they’re assigned a gender that doesn’t make sense to them as they grow up, and some people who are transgendered are also intersex – but not everybody with intersex conditions is transgendered. Most people with intersex are not, and most people who are transgender do not have the classic intersex condition.
BTL: How does intersex fit in to the LGBT continuum, or does it?
Dreger: I think it does for the people who have intersex condition who experience what they’ve been through as a queer experience. And so some people with intersex feel very intensely that the way they were treated because they were being treated essentially as queer in terms of their body type. But a number of people with intersex don’t feel that that makes sense to them, because they identify as straight and they don’t understand what happened to them as having been an experience of being treated as queer. I should also say on the LGBT question, you know, some people experience intersex as an identity. I would say a small minority of people with intersex feel that intersex is their identity. That fundamentally who they are is a person with intersex. But a lot of people with intersex don’t think of it as a core identity, but as something that has been in their history. So, “I” works in LGBT if it’s an identity for somebody; it works less well if it’s not an identity for somebody.
BLT: How many people are affected by intersex conditions?
Dreger: Well, the thing about intersex is you have to decide what you’re going to count as standard male and standard female before you figure out how many people are going to count as intersex. And the problem is that that definition varies a lot. If you count the number of people who … who are born with really obviously ambiguous genitalia, that’s about 1 in 2,000 children. But that’s only a small percentage of people with intersex, because some people with intersex don’t have anything different externally, they have a difference internally.
If you count everything you possibly can, then it comes to more like maybe 1 in 150 to 1 in 350. But it really depends how you count intersex, and we don’t claim that there is a natural category that is intersex. We say that intersex is a political category based on a biological reality. The biological reality is that stuff is fuzzy.
BTL: What is the current practice within the medical profession in Michigan with regard to intersex individuals?
Dreger: I think, in general, in Michigan you’re better off than the average. And there’s a couple people who are responsible for that being the case. One of them is Bruce Wilson, who is in Grand Rapids. He’s a pediatric endocrinologist at Spectrum Health. And he is extremely progressive in his care and actually setting up what’s likely to be the first really progressive, patient-centered intersex clinic probably in the nation. And the person at U of M who has been responsible for more progressive care there is John Park, who’s a pediatric neurologist.
BTL: Can you tell us the difference between what your group’s web site calls “patient-centered care,” and some of the standard practice in treating individuals with intersex?
Dreger: The medical tradition in pediatrics has simply been to be paternalistic and to make decisions for the family as a whole. So they make decisions for the child and also make decisions for the parents in that sense. And of course it makes a lot of people really comfortable, including a lot of parents. But the move in children’s hospitals has been toward what’s called “family-centered care,” and that’s the idea that rather than doing what the doctor thinks is right, you should take really seriously what the family is comfortable with. And so it’s taking much more seriously these needs of the families. The only problem with intersex with family-centered care is that sometimes that becomes an excuse to say, “Well, the parents really need to have this girl’s clitoris shortened because they’re very disturbed by it.” And the parents needs are put before the long-term needs of the child.
What we argue for is really patient-centered care that says that you should take seriously parental distress, but you should recognize in that sense the parent becomes a patient. So the parental distress should be addressed with psychological care and with social work care and with, especially, peer counseling. And that the child is a separate patient and that you shouldn’t change the child’s genital anatomy because that’s what’s fundmentally going to make the parents extremely comfortable.
Our central principle is that a person’s genitals are primarily for his or her own pleasure. We don’t think that children’s genitals are primarily for the pleasure of their parents and/or to make their parents feel comfortable.
The problem we have with surgeries is they often lead to a risk of diminishing sexual sensation or even result in lifelong pain, and one of the things that happens when you end up with diminished sexual sensation is it’s much harder to form long-lasting romantic partnerships, or even short-term romantic partnerships because you don’t feel sexually “there.” So it’s harmed a lot of people, not just in terms of sexual pleasure, but also in terms of their romantic partnerships.
BTL: Your organization’s website says that intersexuality is a highly stigmatized condition – could you give an example of the reactions of doctors and families when a child is born intersex?
Dreger: Intersex doesn’t always show up at birth, but when it does show up at birth one textbook tells us, “Next to death in the neo-natal period, intersex is the worst thing that can happen to a family.” There’s that sort of attitude and the general attitude that I’ve heard from physicians that I talk with one on one – the more traditional physicians say to me, “You know, parents just can’t handle this. This is so phenominally disturbing to parents, and nobody could really live like that. Nobody could really live with a small penis or live with a large clitoris.” So they see it as a really damaging anamomical variation.
And what’s interesting is that the reformist doctors that I work with, when I say to them, “How do parents react to this?” They say, “Oh, you know they’re a little bit concerned, but generally they’re fine. We explain to them that this is basically just a small variation and they shouldn’t be too worried about it.” And they tell me the parents are basically ok with it.
And it’s obvious to me that it’s not like somewhow the traditional physicians and the reformist physicians are encountering completely different parent populations. What’s happening is the ones who are relaxed and feel fairly confident that the child is ok are totally signalling that to the parents. And the ones who are freaked out personally are signalling that to the parents.
And there’s no question that a lot of this is driven by homophobia. If you look at the long-term medical literature in terms of what they’re worried about, they stated for a long time that one of the risks with intersex is having a child turn out gay or lesbian.
BTL: Could you speak to the interrelationship between sex, gender and sexual orientation? I know that could be a dissertation all in itself…
Dreger: It actually was – it was my dissertation! People tend to feel a gender, and so they tend to feel a sort of vague sense, that they usually aren’t forced to articulate, but they feel like the people who are identified as boys or as men are similar to what they are or that the people who are identified as girls or as women are similar to what they are.
And a lot of times that sense of gender is tied up with our understanding of our sexual anatomy, so part of the reason that I feel like I’m a woman is because I menstruate, and I know that other women experience menstruation, and there’s a cultural discouse around what menstruation is like. And so we often experience our gender partly through our understanding of what our sex anatomy is.
And then our sexuality often is also tied up with gender in that we – many of us experience our sexual eroticism through our genders. So when I’m having sex with my husband, for example, much of the time I’m doing that not so consciously, but if I think about or I’m aware of it I’m experiencing it as a woman.
And that’s true, I know also, for lesbian women – that they’re experiencing their sexuality through their gender and through their sex.
I think most of us experience our sexuality partly through our sex and our gender. And that’s why people who are trans, often when they change their gender, their sexuality changes in interesting kinds of ways, too. It shifts a little bit, or they experience pleasure in a different sort of way, because sexuality gets tied up with gender and with sex.
Now, that said, what we know is that you can kind of figure out what sex is. Sex is what the body parts are, and gender is sort of what you’re identified as socially, only you feel personally, and sexuality is your erotic life.
And so we explain to doctors all the time that you can gender a child with intersex by labeling them as a boy or a girl – at least temporarily, they may gender themselves differently later in terms of identity – but you can assign a gender without doing surgery, because you don’t have to have the sexually exact body type in order to feel like a boy or a girl or to be treated as a boy or girl. In our culture you just need to use identifying labels and that sort of thing to do that.
So I think they’re all tied up with each other but I don’t want to tie them up with each other in a way that forces people into having to align in particular ways. I think people often are very different and creative and vary a lot in terms of the way that their personal sex and gender and sexuality line up together. I think body parts matter when they matter to you.
BTL: What possible effects could laws and state and Federal Constitutional amendments, like Michican’s Proposal 2, have on intersex individuals? I was reading about some frightening possibilities based on people’s chromosomes…
Dreger: Well, Texas already has the most idiotic ruling, which is that the way that you’re legally married in Texas is a person with a y chromomsome can marry someone who doesn’t have a y chromosome. Which is so patently stupid. People – women with androgen insensitivity syndrome, complete androgen insensitivity syndrome, have as far as we know, no receptors for androgen. And what that means is they have a y chromosome and they have testes. And so their testes produce testosterone as well as estrogen, because testes produce both. Their body doesn’t have any receptors for that testosterone or for any of the other androgens in their body and so their body doesn’t develop externally along the masculine pathway; it develops on the feminine pathway. So they’re born looking extremely female in terms of external genitalia – in fact they’re often not diagnosed until they’re 17 or 18 years old and don’t menstruate.
And so Texas would say that these women are really men and that they must therefore marry women to have a legal marriage in Texas. Well, that’s completely ridiculous!
They do the same thing of course to transgendered people, and say that if you’re transgendered, we won’t acknowledge that means anything whatsoever. We’re going to force you to only be married according to your chromosomes.
The other aspect to this is that what’s going to happen in terms of gay marriage laws – these are going to go to the courts and intersex is going to become an issue, because judges that bother to listen are going to realize there’s no simple way to define “man” and “woman.” There are socially easy ways to do that, which is to say whatever it says on your birth certificate, but biologically there’s no simple way to draw a really clear permanent line between male and female.
BTL: So, somebody could, in a very bitter breakup, go before the judge and say, “Well, my spouse isn’t even legally married to me because s/he has the wrong chromosomes.”
Dreger: Yes. And I know, actually, a woman to whom this happened. A women with complete Androgen Insensitivity Syndrome who got into an ugly divorce, and the guy didn’t want to have to have to pay child support to their adoptive children and basically wanted to screw this woman, and [he] went to the judge and said, “She’s not even really a woman. She has a Y chromosome. We were never even really married and I want this divorce because we never even should have been married because she has a Y chromosome.”
BTL: How would you recommmend that parents help and advise and support and educate a child when the child comes to them and wants to know why their parts are different from Suzie’s or Sam’s down the street?
Dreger: I think honesty is the best way to do that. And one of the ways that parents can get information about how to do that is to talk to other parents who have been through it, but also to talk to social workers and psychologists who specialize in these kinds of things who are good at helping explain to children why they’re different from each other. And, you know, intersex is like a lot of other birth anomolies, like dwarfism, and like cleft lip, in that children know that they’re different and need to have explained to them honestly and openly why it is that they were born different.
BTL: Why are you so passionate about this work?
Dreger: [During her research] I was really stunned by what I found in the modern-day textbooks. I mean it was stuff like, “If a boy can’t stand next to other boys and write his name in the snow he’ll turn out gay.” Or “If a girl is allowed to be raised with a large clitoris she’ll be sexually confused and may be a lesbian.” And then there was all this stuff about what girls really need are vaginas. There was stuff about, “You ought to just poke a hole there and get rid of everything else.” And there was this notion that you could take a boy with micropenis, pull everything out and just stick a colon there with a hole and that that would be enough to make him a girl, you know – screw the rest of his sexual function, screw his fertility, forget it all.
And the more involved I became [with intersex people] the more infuriated I became that the medical system wasn’t willing to change and wasn’t really willing to listen to people who had these extraordinary experiences to relate.
And it was so infuriating in terms of the sexism, and the homophobia was so intense that it just drove me really to become an activist in terms of the work I did at ISMA.
But it’s funny because I am a straight woman, and I wasn’t born intersex, but I really consider myself a queer activist now in terms of the work that I do, and I go to the pride parade and have rainbow stickers on my car and it really confuses a lot of people because they always think … the way that white people thought the Civil Rights movement wasn’t about them – which is idiotic. There were a few people who were right in the civil rights movement who understood, “Yeah, this is about all of us.”
And that’s my feeling, is that the LGBT civil rights movement is about all of us. And that if the people who have the cultural power, in terms of the people who are not stigmmatized, don’t help, nothing’s ever going to change. As I always tell my students, “Women didn’t get the vote because women voted to get the vote.” I really think that we all have to help each other out in terms of civil rights movements, and it’s really clear to me [that] intersex is a civil rights issue.
For more information:
Books written or edited by Dr. Dreger:
“Intersex in the Age of Ethics”
University Publishing Group, 1999
“One of Us: Conjoined Twins and the Future of Normal”
Harvard University Press, 2004
Intersex Society of North America: www.isna.org/drupal
Intersex Initiative: www.ipdx.org
Bodies Like Ours: www.bodieslikeours.org
U of M’s Multidisciplinary Pediatric Intersex Clinic: www.med.umich.edu or 734-615-3038.