We're all intersex

The author of "Between XX and XY" on people born neither male nor female -- and why everyone's a little bit of both

Published July 7, 2009 10:20AM (EDT)

In the fall of 1998, Lisa May Stevens, a 32-year-old from Idaho, went on a camping trip. Stevens had been told for most of her life that she was a boy, but in her 20s had discovered the truth about her sex -- that she had been born a hermaphrodite, and that doctors had conducted surgeries on her genitalia as an infant. After learning the news, she consulted her priest, who said that while God usually condemns suicides, for her he might make an exception. A decade later, on the third day of her camping trip, she put a pistol under her jaw and pulled the trigger.

Gerald N. Callahan, an associate professor in the microbiology, immunology and pathology department at Colorado State University, uses this heart-wrenching anecdote to open "Between XX and XY," his new book about people who are born neither male nor female (at least in the traditional sense of those words). They are better known as "intersex," an umbrella term that includes people with a tremendous number of genetic conditions, from those born with an extra X chromosome to those with overdeveloped adrenal glands.

Stories about intersex people have had some cultural currency -- from Jeffrey Eugenides' "Middlesex" to urban legends about Jamie Lee Curtis' hermaphroditism -- but their experiences have yet to attain widespread recognition or become widely understood, something that Callahan hopes to change. As he describes in the book, many children born with these conditions have been surgically (and often arbitrarily) assigned a gender shortly after their birth -- but as his interviews with intersex people and doctors show, early surgical intervention has often had disastrous repercussions on patients' later lives. Many never fully fit into their assigned gender and don't learn about their reassignment until well into adulthood, with understandably traumatic results.

"Between XX and XY" combines the personal narratives of intersex people, semi-lyrical (and occasionally overdramatic) descriptions of the sexual development process, and examples from the natural world to argue for a less invasive approach to sexual reassignment for intersex children. More boldly, Callahan also attacks the "myth of the two sexes," arguing that most humans don't exist as purely "male" or "female," but somewhere in between.

Salon spoke with Callahan by phone about the diversity of the intersex world, what hyenas can teach us about gender, and why we shouldn't forget that sex ought to be fun.

Given that you work in the field of pathology, intersexuality isn't exactly your immediate area of expertise. How did you end up writing this book?

The area I'm most involved with within pathology is immunology, which on one level is the study of how we manage to distinguish ourselves from the rest of the universe. I was preparing for a course when I came across an article that mentioned that 65,000 children are born of indeterminate sex each year. I thought that was amazing -- because that was a much higher number of individuals than those afflicted by many diseases I was very aware of -- and I began to wonder why I hadn't heard about them.

Given that transgender issues have been getting so much more attention in the past few years, why haven't we heard about intersex people?

They haven't had movies like "Transamerica" to bring their issues to the fore. But I also think that intersex is something that makes people a little more uneasy [than gender dysphoria], because it makes us question these things we like to take more or less as God given, which is the sanctity and the gravity of sex.

Then you think that this polarized distinction -- between men and women -- isn't accurate?

There's no other place where we so quickly divide humans into two categories as sex. When I started doing research on the biology of sex development, one of the things that I realized is that the process is controlled by a series of enzymes and the reaction may be more or less complete. It's not just two poles where that whole process can end up. In between what we call the ideal biological male or ideal biological female, there's a whole range of other possibilities that don't differ from our basic preconceptions to the extent that we have names for them or call them a disorder. Just like with every other human trait, there are an infinite number of possibilities.

So in essence you'd like for people to think of sex in the same way that we think of hair color, or eye color, or other sorts of physiological traits.

Exactly. We might say two people have brown eyes but that doesn't mean that they're brown in exactly the same way, or what is seen through those eyes is the same.

Before reading the book, I was familiar with a few intersex conditions, like Turner Syndrome, in which people are missing an X chromosome, but I was honestly shocked by the sheer diversity of what you described.

The more I looked into it, the more I was amazed by the range of possibilities. My sampling of it is small at this point -- otherwise my book would have been encyclopedic. There's XO, XY. There's non-disjunction during fetal development, so someone loses an X chromosome. Sometimes they get lost later on during cell division, so people can end up being mosaics, in which some of their cells have XO or XY or XX and their body can contain two or three different chromosomal cell types -- and whether they appear physically as a man or a woman depends on which of those cells ends up in the developing gonads.

One of the people you speak with in the book claims that "Will & Grace" was good for intersex people, which I find interesting because I don't think many people think of them when they think of gay and lesbian culture, much less "Will & Grace." Do you think the community should be lumped in with the gay and lesbian movement?

I don't claim to speak for intersex people, but I think no. I think that they have a different sense of their world than people who are gay or lesbian. Sexual preference is completely different in my mind from biological sex. Gay and lesbian people can fairly easily identify with the classic binary of male and female, and intersex people for the most part cannot. They have to me a much more complex and graduated series of events they need to deal with [than do gay and lesbian people]. I think that people have a tendency to group all of that together -- sexual preference, gender dysphoria, transgender, intersex -- and they're really in my mind very separate sorts of things.

In the book you argue that we need to think of sex as being fun -- and not just for reproduction. What does that have to do with the intersex?

We have mutilated thousands of children a year [through genital surgery], and parents and physicians have felt the drive to do that because their No. 1 goal is to maintain reproductive function. If we think the sole function of genitalia is reproduction, then nonreproductive genitalia is, in some sense, a bad thing and something needs to be done about it. If we think that genitals serve a lot of functions beyond reproduction, maybe we wouldn't feel like it was so necessary to try to make people look alike.

But don't these doctors also do these procedures to allow their patients to have a normal sex life?

I realize that on behalf of parents and physicians there's an enormous motivation to try to offer to this child as many opportunities as possible. But Dr. Alice Domurat Dreger [an associate professor at the Feinberg School of Medicine], whom I quote in the book, had interacted with an enormous number of intersex people, and she had met only one person who was pleased with the surgery -- most thought they had lost, not gained, something.

So how do you think these decisions about surgery should be made?

This idea was introduced to me by Joel Frader [professor at Northwestern's Feinberg School of Medicine], but I think the best situation now is for the parents to be involved, for there to be a team of physicians -- a surgeon, an endocrinologist, a psychiatrist -- to be involved and for them to try to explain to the parents the most they can do in the most realistic way. In this world it may not be possible to raise a child without a gender, but that doesn't mean that surgery has to be performed. The ideal situation would be that, at a later date, the child could participate directly in the decision that might involve irreversible surgery.

You spoke with a number of intersex people in the book, most of whom have very moving stories. I imagine many of them were uncomfortable talking about their experience. How did you get them to open up to you?

It took me months to establish relationships where people finally acquired enough trust and were wiling to share with me. I'm amazed in hindsight that it came together as well as it did, because my own stupidity at the outset alienated nearly everyone.

At first I put out an ad saying I was doing research for a book, without establishing my credentials, and I got several negative comments from people saying, "Here it goes again." A couple of people remained hostile to me after that -- I think they'd just been burned. One of them had participated with an author before, and the author had ended up writing a book claiming, "Here's what intersex people think, and this is what it feels like to be intersex" based on a fairly small amount of information. Another person had been involved with someone who'd basically written something about how "weird" these people are.

You also go to great lengths describing how some other animals, like hyenas (whose females have penislike appendages) and fish (some of which can spontaneously change sex) reproduce in unconventional ways. It seemed like an arbitrary comparison to me, given that the natural world has such a diversity of reproductive strategies. Why do you think that it's helpful to look at other species' sexual reproduction?

Many species have evolved different ways of dealing with sex. It suggests the classic relationship of the male-female binary just doesn't fit very well with the real world. If that female-male division is true of humans, which as you know I don't believe it is, that would make us the biological exception rather than the rule.

But those adaptations you described have an evolutionary purpose, while most intersex conditions don't -- at least to an immediate observer.

I didn't mean to suggest that intersex is a biological adaptation that will somehow further the species. The persistence of intersex reminds me that there's a continuum, that we isolate people in the middle and say they have a problem because they're reproductively incompetent or don't look right or whatever. None of us meet the criterion of being the perfect male or the perfect female. We are all intersex.

By Thomas Rogers

Thomas Rogers is Salon's former Arts Editor. He has written for the Globe & Mail, the Village Voice and other publications. He can be reached at @thomasmaxrogers.

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