Elizabeth Reis is a professor of women’s and gender studies at the University of Oregon and is the author of Bodies in Doubt: An American History of Intersex (Johns Hopkins University Press, 2009). This year (2012-2103) she is a visiting scholar in the History of Science Department at Harvard University. This interview originally appeared in Feminists for Choice and is reprinted with permission.

1. What was the motivation behind writing Bodies in Doubt?

So much of the “history” of intersex begins in the mid-1950s with a critique of John Money and his colleagues at Johns Hopkins University. This was an important period, of course, because Money’s protocols became widely adopted, but it was hardly the beginning of the story of the medical management of intersex. As an early American historian, I wondered what happened to those born with unusual bodies in earlier eras. I wanted to find out how the gradual process of medicalization affected our understanding of how male and female bodies were supposed to look.

2. Disorders of sex development (DSD) are actually quite common (approximately one in every two thousand people is born with genital anomalies) and there are many different types of DSD. Can you tell our readers a little bit about this?

The numbers are tricky because not every intersex condition is obvious at birth. It’s somewhat easier to “count” something as intersex if an obvious genital anomaly appears right when the baby is born. But there are some conditions that don’t manifest themselves until later, at puberty, for example. If a girl doesn’t start her period, her parents might eventually take her for an ultrasound where they find that she has internal anatomy typically found in boys. This is what can happen with Androgen Insensitivity Syndrome. The body is insensitive to androgens, and so the child looks typically female at birth, is raised as a girl, but then never gets her period. She has no uterus but instead has internal testes and XY chromosomes. Most people never get their chromosomes tested, and so we just assume that all girls are XX and all boys are XY. This isn’t the case, in fact.

You’re right that there are far more babies born with DSDs than most people are aware of. This is because we have treated intersex as if it’s something to be ashamed of, which it is not. Parents have been advised not to tell anyone, even their own child, what is going on. Consequently, many children grow up with a sense of secrecy and shame about their bodies and unaffected people never hear that much about any of this. And when they do, it’s often mixed with a lot of inaccurate information and old-fashioned terminology. For example, intersex people used to be called “hermaphrodites.” This is now considered a derogatory term because it conjures an image of mythical creatures, not actual people!

3. You discuss how the ideas about stereotypical masculinity and femininity drove the treatment (both medical and social) of individuals with different types of DSD. Do you think the treatment of these individuals would have been different and less discriminating if we had more flexible opinions about gender and gender roles?

I do think that our conception of gender roles and gender presentation is very limited. I would say that in general, our understanding of “normal” of just about everything is quite narrow, and we desperately want to fit within those limited confines. What makes dealing with intersex even more complex is that parents are often asked to make decisions regarding their child’s body. Of course, parents want what is best for the children. They want them to be happy and they want them to grow up without being teased or ridiculed for having an unusual body. And so many parents might consent to “normalizing” surgeries for their child so that their genitals will look more typical, but sometimes these surgeries have negative consequences. For example, most girls do not have a very large clitoris. In the past, doctors generally removed or reduced large clitorises so that the girl’s genitals would look more like those of a typical girl. The problem with this approach is that now that girl will have reduced (or even no) sexual sensation. Today physicians are much more cautious about this kind of surgery, though it still happens because we are not used to seeing girls with such anatomy.

Boys had their genitals modified as well. Some born with what is known as a “micro-penis” had their genitals surgically altered to become girls, in the past. The thought was that a boy couldn’t possibly live as a successful boy with such a disfigurement. Since the late-twentieth century, attitudes towards these surgeries have changed, largely as a result of intersex activism that began in the 1990s. Some people who endured these procedures never felt right as girls, and would rather have been boys with different-looking genitals than girls. If, as a society, we felt more comfortable with difference, we might not be so eager to surgically repair bodies that don’t actually need repair.

4. You suggest changing the name “disorders of sex development” to “divergence of sex development.” Do you think that this will help show that DSD are more common than people know?

I would like to see the name changed from “disorders” of sex development to “divergence” of sex development, or even “variation” of sex development . . . anything that doesn’t encourage unnecessary pathology would be preferable. Perhaps, as you suggest, a different name might also suggest that it’s more common than people realize, but primarily my reason for disliking “disorders of sex development” is the use of the word “disorder.” Most people will assume that a disorder requires fixing, and that isn’t always the case with intersex. Of course, sometimes there might be an underlying metabolic concern that needs careful medical attention, but often the issue is merely cosmetic or social. I think that using the word “disorder” reinforces the notion that every body has to look a certain way, and that everything can be fixed. As many scholars and intersex people have demonstrated, often the medical “fix” can make things worse. Loss of sexual sensation, incontinence, scarring, in addition to the emotional trauma of constant surgeries. . . we need to ask ourselves if all of these things are worth the effort to normalize bodies.

5. In regards to the reproductive rights of individuals with DSD, what would you like to see happen in the future?

I would like to see ALL people be treated with dignity and respect, no matter the shape of their genitals or the composition of their internal organs or chromosomes. I would like to see all people told the truth by medical professionals, even if the truth is less promising than what they think people want to hear. I would like parents of intersex children to be in contact with other parents who have gone through similar circumstances so that they can compare notes and not feel like they’re the only ones with a child they weren’t expecting. I would also like prospective parents to know about the possibility of intersex births so they don’t feel pressured to make permanent decisions about their baby’s body right after they’ve given birth. Most intersex births do not require emergency surgeries, and parents should be told that. I would like intersex teens to have a chance to meet and support each other. There’s a wonderful group of young people in the U.S. called Inter/Act that works with Advocates for Informed Choice. They just published a brochure designed for parents and doctors that is just fabulous. Mostly, I’d like to see intersex discussed more openly and honestly, and I’d like to see our understanding of what is “normal” broadened.